My tricks and tips for dealing with unexpected changes in day to day life due to Migraines


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First and foremost I make sure I stay hydrated each and every day by drinking a lot of water during and cut back on caffeine. Dehydration is a #1 cause of most migraines and if your dehydrated I found out personally it can take longer for your medication to kick in and take effect and compounding the situation. Other than that I have found the following my best way of trying to cope in a day to day basis that is so unpredictable:

I have a few tools that I use to keep ahead of the weather, as some of my migraines are weather related due to changes in the barometric pressure. On my iPod I have three go-to tools: Migraine Mate which will let me know if my risks for that day are elevated based on weather patterns due to my GPS location-I can add my pain rating and it will keep a Migraine Log that tracks your Pain vs. Temperature; Barometer which will give me the constantly changing pressure, temp and wind speed based also on my GPS location; and ecoHeadache paid version so I can customize with all my medications and alternative therapies-this is my migraine log and I can print a report to take to my doctor based on my documentations and settings. I downloaded those apps from Apple online store and they are very helpful in helping me keep track of migraines and triggers. On my cell phone I have a paid app through Google Play Store called My Pill Reminder: I have all my meds listed with the doses and times and it will sound an alarm that will not stop until I shut it off so that I do not forget to take my preventive meds on time. Missing doses or forgetting the times and not being on schedule is another big trigger for a Migraine to take root. You must take your meds on time and the same time every day and if you take the same med twice you enter it in twice and have the times set. The night before I have a pill box where I put my doses for the next day so I can have them ready when my timer goes off, that way there is no confusion and no forgotten pills.

With those techno tools I can try to keep ahead of any of those migraines that are weather created by taking my abortive at the 1st sign of an attack to hopefully prevent a devastating migraine. Along with watching the weather updates on TV there isn’t much more I think I can do in that department.

And then I make sure that my Migraine Survivalist Kit on by beside nightstand is replenished often-after each and every use. I will do an inventory and pre-fill any anticipated RX’s in advance regardless if I need them at that moment or not. It’s best to have them on hand so that I do not run the risk of running out in the middle of an attack, which would be a nightmare and unimaginable.  I also ordered a couple of those old fashioned ice caps, the kind my mother use to have years and years ago. The bag you fill with ice cubes and it has a screw on cap and the outside of the bag is cloth covered so you don’t have to use a hand towel with it. I found these last longer than the gel filled and cost around $6.00 to $10.00 depending on where you buy them. I got mine on Amazon for about $7.00 each. Any freezer gel packs I have I will often check to make sure they have not developed a leak. After repeated use of thawing and being refrozen the plastic weakens over time and I have had some of the gel ooze out and get on my dark navy sheets. Plus with a dog around I’m sure it’s toxic and I won’t have to worry about my dog getting into it 1st If I don’t catch it in time.

If I try to make any plans with friend or family I always leave an opening in advance. I will tell them I’d love to have them over or go with them, but I forewarn them that if I get a Migraine that will prevent me from participating to not get upset and be prepared if I have to call or tell them I cannot make it the day of so that they are not caught unprepared. I know no one likes to be cancelled on last minute, but my family and remaining friends have known me long enough and know what I go through and they have learned to expect a possible last minute no-show. Family might get a little upset but friends are more understanding. So on that point I try to maintain and keep open lines of communication with everyone I relate to on a day to day basis and keep them informed of medication and therapy changes as that can play a role as well. Communication is key.

When I actually do get to make it out of the house, I have learned to carry a couple of pairs of ear plugs in case I end up in an environment that is too loud since I’m really sensitive to loud noise. I have also learned to carry with me at all times, regardless of the weather, my sunglasses because I can even use them indoors under that terrible florescent lighting. I might get some odd looks if I use them but it’s to my advantage and not those passer-bys. I always make sure I have back-up medications with me as well and even have a pair of my Sumatriptan injections w/alcohol swabs just in case. In my cosmetic bag that’s been changed to my medication bag I also carry a printout of my current medications, OTC supplements, current doctor information and contact information-just in case an accident should happen it’s in print so that there is no lack of communication or confusion when the occasion occurs. In an emergency who can remember the names of the meds, doses and all their OTC items-or those of their doctors contact info or who to contact in case of an emergency? I sure couldn’t. I also carry a mini tablet and a couple of pens to document when I take meds away from home along w/a few short notes so that I don’t lose track of that information. And I will have my mints as well that will soothe my stomach and a pair of Sea Bands for the nausea if it should hit me all of a sudden. And I do a last minute check before I go anywhere that I have my driver’s license and insurance cards and a method of payment in case I end up in the ER to pay the co-pay, so my checkbook or debit card is always with me as well. I’ll have some portable wet wipes with me as well, just in case……….

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(My cosmetic case that I have made my Travel Migraine Emergency Rescue Kit)

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(As you can see it’s stuffed to over capacity w/anything I can think I’d need away from home to abort a Migraine)

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(These are the essential items as I had listed them out for display-a duplicate set of my backup abortive meds and the rest-medical info printout, etc)

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(My billfold clutch that contains checkbook, coin and paper money along w/ID’s, insurance card, medic alert card and debit card & store discount cards)

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(Once this items are loaded into what I once thought was a good sized purse it’s bursting and any extra room for anything is pretty sparse)

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(I add my sunglasses and by the time I’d put my eyeglass case and cell phone in there I can barely zip it up. I guess it’s time for purse shopping, UGH)

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(The front zipper pocket barely has room for lip balm and house keys. I hate to purse shop because I’m so picky about what I get)

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(this is my new purse, or should I say “suitcase” to carry my On the Road Migraine Kit. I’m already catching jibes about it-hey Julie, couldn’t you have picked out something a little bigger-sarcasm abounds. I’m not too happy w/it myself but I need the size and it’s leather and it was under $30.00. Sold)

I make sure my cell phone is always on a full charge and I have my contacts phone number information updated. I have my most important ones set on speed dial and I love the feature where I can put my important contacts as a direct dial app on my home screen, so then I just click on their picture and it will automatically dial them up. That would be a great life saver when you can’t think of a name off hand-you turn on your phone and your screen lights up, you see a picture of a face and you select that picture and it direct dials. Because oftentimes when a migraine strikes confusion sets in and you cannot think too clearly, so this is a good tool I like to use even at home. Technology is so amazing this day and age we need to take advantage of every tool as well as the tricks learned on these amazing devices to our advantage. And I make sure in my phone settings I have my GPS turned on so that it’s track able.

If I leave the house I will always let someone, spouse, daughter, and friend-know where I’m going and what route if possible. And I’m learning that I need to take the GPS with me so that in case if I get confused if a migraine hits and I cannot find an alternate way home, that I will not get lost and if I have to call someone for help the GPS will show where I’m at. In the past when I’d get lost on my way home I’d call and I’d be embarrassed to say I didn’t know where I was for sure. That is just not a safe place to be-it’s terrifying and could be life threatening if something else should happen like if you get too dizzy to drive or your vision gets too obstructed w/an aura. When you’re out on your own a GPS device and a cell phone are a must have. And if you think you may be gone longer that a couple of hours take along a cell phone battery charger that plugs into the cigarette lighter. And make sure someone checks out in advance the cigarette lighter actually works so that you know you can use it if your battery runs down. You don’t want to be stuck out away from home with a dead battery. And I make sure I have a bottle of water to stay hydrated and of course in case I need to take pills.  And I try to concentrate on staying focused, calm and not to panic.

If I get a migraine at home and need the quiet and silence I will put a sign on my front door that will state a Migraine is in process and please do not disturb. Many people have been very courteous and have not knocked or rung that God awful doorbell when I put that sign out. So that is a good way to deter unexpected would-be guests or solicitors when you’re in a not so hostess friendly mode. And if I’m home I retreat to my bedroom that I have made a dark and quite fortress, I will shut off the ringer to the phone, turn on the fan for white noise and use my iPod with meditation music and have turned down low, and I now have an aromatherapy humidifier on my side of the headboard w/soothing essential oils to calm and soothe me.

My Comforting Blend Recipe:

5 drops Lavender Essential Oil
5 drops Ylang Ylang Essential Oil
4 drops Clary Sage Essential Oil
4 drops Tangerine Essential Oil
2 drops Vetiver Essential Oil
2 drops Frankincense Essential Oil
1 drop Marjoram Essential Oil
1 drop Sandalwood Essential Oil
1 drop Myrrh Essential Oil

I combine these oils in a European dropper bottle and keep in a dark, dry cool place-my bedside stand drawer. I will add 8-10 drops in my diffuser because it can take that amount. Some diffusers take less and some might take more. But I found that the pure unadulterated essential oils do not irritate nor do they trigger a migraine. Only the commercialized, manufactured scented items will trigger me. This will not abort my migraine but it will soothe, comfort and relax me so that I can better endure and ride it out.

All the essential oils I use are pure therapeutic oils. They are not pre-blended nor are they perfumed oils-those would trigger a migraine, so stay away from perfumed oils.

(I will carry a small vial of pure essential Peppermint oil as well to sniff if needed when a migraine starts to flare up)

And I avoid my triggers: food, beverage and atmosphere like the plague. I eat freshly prepared food and stick to the NHF Low Tyramine diet guidelines where 1 restriction is to not eat anything that is more than 6-8 hours old-so no leftovers. Protein the longer it sits the more Tyramine builds up and is a major migraine trigger. And of course I avoid my other triggers: MSG, Nitrates, Nitrites, Diary, red wine, aged cheese…..

I hope some of these tricks and tips will help out someone. If you have a few of your own to share or add to this list please let me know. I’m always on the lookout for new tools and tricks to use for my own intervention.

Check out this months Migraine Carnival Blog postings listed as of 5-13-13 for other bloggers tips and tricks and coping with Chronic Migraine Disease:

Coping with Change May 2013

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

May 2013 Headache Disorders & Migraine Blog Carnival: Theme-Practical tips & tricks for coping with the changes brought about in our lives by Migraine & Headache Disorders. Posted 4-8-13

Unexpected Lessons Learned and Old Ones Renewed


long road into the sunset
Who would think that suffering with a chronic disabling Migraine Disease, and other invisible Illnesses, that during the course of time you could find any good to come out of all the pain and suffering. Let alone to find any blessings in any of the chaos-with all the conflicting diagnosis, tests, trips to doctors offices, being yanked from one specialist to another, and trying all different concoctions of medications as well as a slew of alternative and holistic approaches, to try to find some sort of relief of any sort! Some people would not blame you if you just walled yourself up, shut yourself off from the outside world and wallowed in  your own pity, crying day after day “why me”. Some people actually do that for a while until they wise up and too fortunately others still stay stuck in that self-pity mode. If you stay in pity mode for too long you end up living a life on your own. My Blessings are my Lessons learned because as you go through life and your given a task or a lesson, you work on it, trouble shoot it and overcome it,  and then apply it positively to your day-to-day life I consider that a Blessing-to take a negative and make it a positive to live by, follow and hopefully inspire others.

Human nature is self-preservation. It’s in our genetic makeup and being human and all we cannot overlook that flaw we all have built into us. We can however change our perspective and relearn a new thought process and coping mechanisms if and when we get out of the initial grief process given a diagnosis of a disease that has no cure. Of course the process is far, far worse for those with a terminal illness. But pain is pain no matter which way you slice it and to live in it and with it day in and day out not only wears out the body but the mind and soul as well. NOT to minimize those with terminal illness, I would never do that. BUT you do have a way out by learning to put others first and not focusing on your own pain so much but by putting empathies’ on others above yourself. In the process this makes your suffering seem less catastrophic and gives you a better mind-set makes for a more peaceful transition into a balancing act of normalcy, or what we can come close to in the Invisible Illness Community. You take the hand you’re dealt with and make the best of it. Oh sure you can moan and groan and have a little pity party and bombard friends and family with daily or weekly emails of how sick you are and how hard it is to manage. And it could be very well true as we all know. But after a while those people that you moan to and complain to after a while will turn a deaf ear to it all and become desensitized by your plight and minimizing your illness and you as well. And that as a result will diminish the plight of all chronic pain sufferers everywhere in the long run.

I have seen over the years waiting in the doctors or specialists waiting rooms people worse off than I am on an outward appearance and I feel empathy towards them. I’d go out of my way to open doors for them when entering or exiting the building,  or letting them get ahead of me in line-no matter where I am: at the store, the pharmacy or at the check in desk at the clinics. And then I would get to wondering about the people that didn’t show any outward sign of distress (as it can be easy to hide sometimes in public, based on the severity of pain that is) and I would silently wonder what demon (s) they are dealing with and I’d feel empathy for them. Not many “well” people wait for an hour in the neurologist waiting room for the heck of it if they feel well, let’s put it that way. And I’d marvel at how composed some people were that they’d keep their pain hidden from the public. Other times some people would persistently go up to the desk and demand to be seen sooner than the others that came in ahead of them. I would not know their situation fully so I would not sit and judge unless on a few occasions they carried on because they had an audience. But again you cannot judge that person’s circumstances like they cannot judge yours. I’m sure if I allowed myself to be taken to the hospital with a full-on horrible migraine I would not be a pretty picture, so one could only imagine.

I do admit at first I was in the denial, weepy, self-centered “why me” phase for a while and I moaned and groaned and went on about the injustice of it all. Then you look and see newborn babies born premature or with devastating birth defects then you start to feel foolish. Then you see people have strokes, get cancer and die of Diabetes and you feel more foolish. Pain is pain and sickness is sickness. It does not discriminate-we are all destined to be grasped by its devastating effects. I have learned this humbling experience along the way and slowly I learned to put others first and to pray for others first. Because in the end we are all in the same boat one way or another-suffering and trying to cope. And when I’m struck down with another debilitating migraine and as I do my meditation in my dark room with my  Migraine toolkit and fight it out,  I take a moment to remind myself that there are others out there less fortunate that I am and who have it worse.

I have learned that there are people who cannot afford the medical care and medications I receive and that is unjust.  I feel blessed that I do get good care and pray that others can have access to even better health care. I will always try to think the best and wish for the best of others as I fight through my attacks. I learned I am blessed to be provided for as I look at people in line at the grocery store, and especially the senior citizens. I see them digging in their purse or billfold to pay for their groceries and I wonder what hard time they are having and say a silent prayer for them. Or if I see a handicapped person I give them the immediate right of way or help them reach for something on the shelves if they appear to have trouble. Any kind of helping hand is better than none at all. I often wonder if they sacrifice food for meds or visa versa and what a terrible predicament that is. Then I’m humbled and shame myself not to complain. Then I will be at the deli counter and someone has waited longer that me, so I let them go ahead of me. Also if someone is in front of me in the checkout line and lacking some change for their purchase I will offer it if I have it not judging, but with empathy that they are having a hard time making ends meet-do they have to spend their life savings on food and/or medicines I often wonder. I do not judge but I have empathy and I realize that after all these years that yes, I suffer horrible pain, but I will recover and continue on. I have shelter, food, medicine, family and good medical care so for that I have learned my pity party is No More. And I interact with people online that are more ill or as ill as myself, and I put the focus on them-not me. I will share my experiences if it feels right and maybe that is why I have this Chronic Invisible Illness-to help others with my experience and insight.

We don’t know the master plan of why this and that happens, and we are not supposed to know why, but we can do our best to conquer, survive and thrive. I have also come to realize that yes indeed there are others that have it worse than me and how dare I whine and complain about what may be trivial as compared to someone who may be terminally ill or have a more chronic condition that I do. It is not a contest of who is the sickest and it’s appalling when you see that play out in life, the “I’m sicker than you are because of this or that” or make a competition out of it. Come on, grow up people and see the bigger picture. It would do no good in the end and would only end up adding to my suffering and make me or someone else lonely, bitter, and resentful ole hag. And who the heck wants to be around that? NOT me! Attitude is half the battle and if you win that you’re on the home stretch. Life is what you make of it, as it’s been often quoted but so very, very true. And your attitude impacts your health-mind over matter. It’s been proven and from what I’ve tried to practice I’ve found it to be true. I’m human and I slip up from time to time, but then I will catch myself and put it all back on track. It’s a constant learning experience. I’ve learned doing a daily gratitude journal is a great way to reinforce this mindset, and to practice writing daily what I have to be grateful for. It’s all about keeping things in perspective. And also by doing daily Bible Devotions as well and incorporating them into my journaling and remembering while meditating through the pain or even on tolerable days-it doesn’t matter what the circumstance remember what I have to be grateful for and how fortunate God gave me the gift of another day so I make the best of it as best as I can.

I have learned to be a better patient as well. To research online before my appointments and take any documentation with  me and especially make sure my information sheet I make up and take with me is better organized and updated with current medications, supplements and symptoms I’m having trouble with. I learned a valuable lesson from a pier online how to make a better patient form and my last visit I took my draft and the doctor was very appreciative. They see so many patients in a day that they don’t have the  time to go through the electronic files and remember everything about each patient. I keep mine to two pages max as not to overload him/her and I update it as soon as my medications are updated and/or changed so that I don’t have to do it last-minute before my next appointment. I have come to be more organized in some areas but a work in progress in other areas.

**These are by far the best lessons I have learned-to be unselfish, compassionate, , patient, calm, focused, forgiving, dedicated, spiritual, humble and self-sacrificing. I have finally learned to stop fretting and worrying about tomorrow or the future-it’s out of my hands to an extent as God has the master plan. So I take each day as a present and consider tomorrow a gift.  I have learned to love unconditionally even if it is  not returned, to let go of past grudges-let it go and don’t fester on it-it only hurts you not the person your grudging. And to live each day like it’s my last. To not hold material possessions as more important than family, friends and life-you can’t take it with you and it’s only temporary while we walk this earth. We didn’t grow up with much and mom and dad always told us you came into this world without a penny and you will leave without it, so don’t put value on meaningless material things-God first, family second and friends. It helps too that my parents raised me this way-to do unto others as you’d have them do unto you. We were constantly told that as we grew up. It was actually hammered into us as well as to respect your elders and to always say please and thank you, and to always be humble. And it’s not worth it to fight-who cares who’s right or wrong. Usually the person you’re arguing with will not change their outlook or perspectives, so why waste your breath and time. But to stand up for friends and family and lend a helping hand to others  in need when possible.  It hammers home the practice of turning the other cheek, which for people as a rule we are prideful and do not want to turn the other cheek and let any insult or wrong-doing pass. No, we want an eye for an eye and a tooth for a tooth.  We want punishment-we want revenge. It eats us alive over time because we let it, and that negativity also feeds to chronic pain. We are not in general forgiving people. I have worked hard to overcome that thought process and have forgiven a past horrendous act against me physically and emotionally. My attacker did not ask for forgiveness, but I gave it after years of repressing it then seeking help and dealing with it to get my PTSD in control.  I do feel freer to have done this and talking about it helps-that in and of itself if anyone takes away anything from this post it should be that-FORGIVE any past grievances, work on it with a counselor if needed like I did, talk to friends and pray, pray, pray on it. With work you can let it go and that too improves your outlook on dealing with chronic pain. There is truth in mind over matter. Practice and believe it because it’s true. Again, it will not cure you but makes the whole situation more tolerable. It’s ok to have bad days and slip, but recognize it, correct it, and get back in line.

I have also learned over time and research there is NO cure for this disease and have come to grips with it. I have made peace with it and even when I have sometimes well-meaning family and friends say I need to work harder and go places to be “cured”, it’s fruitless to try to re-educate them that this is cureless, I let it now go over my  head and pass by me like the breeze and not upset me anymore. I have learned, the hard way, that they will never get it even seeing reports in print and online so why fret over it and stress over it. I’m at peace with it and let it pass me on by. That is a Blessing that I can come to terms with the disease and almost make friends with it by letting it be my teacher.

Well, mom and dad, it finally stuck and yes I did learn something after all. As they are watching down from heaven I can only hope I’ve done justice to their lessons taught. You cannot take Southern manners out of a Southerner, even when I’ve been transplanted to a Northern location 🙂

Sometimes Chronic Illness can be a blessing in disguise with all the lessons you learn along the way. Especially for me as these are my experiences and what I have learned and can attest to. You can learn how to be a better person and leave a positive footprint in the lives of others. I think that being so ill and struggling with chronic and most times excruciating pain daily, and focusing on being positive, peaceful and calm-meditating and praying through it with my calming mediation music, my darkened sanctuary, essential oils and my best puppy friend. That along with my parents teaching has made me a better person. At least I like to think so.

 

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

Migraine Carnival April 2013 Theme: Unexpected Blessings that have come out of our experiences living with Migraine Disease and other Headache Disorders.
(Submission 3-27-13)

Unexpected blessings that have come out of our experiences living with Migraine Disease and other Headache Disorders.

Migraine survivalist kit and tactics


My Migraine MUST HAVE Survivalist Kit  

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(The Step Bench is for my Dog to get on bed)

1. Dark Bedroom (shades closed, curtains closed, door shut, and cell phone shut off-sanctuary in place

2. Several Ice packs (different shapes for different applications all frozen and ready to go)

3. Cool washcloth to wipe off face or place on forehead

4. Bed Buddy (1 for neck and shoulders and 1 pr for feet for microwave, and a few homemade rice packs)

5. Warm fuzzy socks 

6. Warm, loose fitting, comfortable fleece pajamas (or men’s over sized fleece separates-the baggier the better)

7.*1-2 bottles of water for bedside table (I can tolerate water at room temperature better and keep nearby at all times)

8.*7-up at room temperature (room temperature settles better if I need to take w/saltines so I keep one nearby at all times)

9. Ziploc bag w/straws for 7-up

10.*Abortive Medication on bedside table (Imitrex injector pen kit w/refill, alcohol swabs, Migranal Nasal Spray w/portable O2 tank nearby)

11. *AYR nasal gel packaged in small Ziploc bag w/Q-Tips for use w/O2 to keep nasal passages moist

12.*Backup Medication on bedside table (Indocin and Fioricet-experimenting w/herbal Hylands Homeopathic Migraine Headache Relief Tablets)

13. *Anti-Nausea Meds (Zofran)

14. *Sea Bands for nausea

15. *Organic all-natural peppermints (Yummy Earth Organic Refresh Mints, Wild Peppermint-got these off Amazon.com) great for tummy upset

16. *A pkg of saltines (in 2 large Ziploc bags (to keep from going stale faster)

17. Notepad on bedside table to document medication w/ 2 pens and 1 pencil 

18. Post-it notes for spur of the moment thoughts or to-do’s

19. **Box of Kleenex

20. **IPod loaded with soothing meditation music w/comfortable aftermarket ear buds

21. **Over sized eye mask to block out light

22. **Package of ear plugs to use when IPod not in use

23. Electric Fleece Throw (under comforter on top of blankets and sheets)

24. Extra pillows

25. *Essential Lemon Oil (for use on temples only-massage in and on tender points on scalp)

26. *Small package of hand wipes 

27. Small bedside lamp w/dimmer setting or switch

28. Small flashlight to use in middle of night to get medications and document on notepad as to not turn on any lights

29. Picture on bedside table-family members, friends, or scenic to comfort and focus or meditate on (I change randomly depending on mood)

30. A lined waste can (Just in case)

31. Nightlight in bathroom so you do NOT have to turn any overhead or bathroom lights on

32. Cell-phone w/ringer off (we have no land line)

33. Timex watch w/Indi-glow face (emits a soft glow to tell time to write down medication doses so no need for lamp or blaring screen on cell-phone)

34. My glasses (of which without them I am totally blind as a bat when it comes to reading)

35. *Un-scented lip balm for dry lips (seem to get extra dry during a migraine attack and if using O2 w/Migranal)

37. Heavenly Acupressure MAT & PILLOW Combo (got this off of Amazon as well. I use it on the bed as the floor is too uncomfortable)

38. I make sure to try to remember to post my re-usable laminated “do not disturb-migraine in process” sign on front door

39. My bible and Journal if I feel up to trying to read a scripture bookmarked for inspiration and my Journal to write down something positive for gratitude to focus on positives and not negatives

40.  And last but not least, my most important Migraine Med-my little cuddly dog Paco who snuggles and keeps a watchful eye over me when I’m ill. 

*(I keep most small items in a small basket on my bedside table in an organized layout and what doesn’t fit **I have on my little cove on the headboard, all easily accessible. The only things I need to get up and get is the ice packs in the kitchen and re-heat my heat pads in the microwave)

When I first started getting Migraines over 25 years ago the house we had then had a window in it so when we built the house we live in now we customized it and I made it Migraine friendly, which meant NO windows in the bathrooms. A lot of people thought that was strange but I spent a LOT of time on the bathroom floor in the early stages of my Migraine episodes (and still do from time to time) near the toilet, or porcelain throne if you’d prefer to call it that. And also the feel of the cool floor against my head was comforting in a strange way as I made a pallet to lie on as comfort was not the main focus at that time. Little was known about Migraine disease and there were no medicines at that time targeted to abort nor prevent them so it was just riding the storm out the hard way. Earlier in those times my dad brought me over my mom’s Darvocet as that was all she had been given to fight her migraines. Now I know that is a big no-no sharing ones medications but there was nothing for me to take that would take the edge off. 

Thank God they were not that frequent but after a few years Imitrex came out and I went to see my family MD. I was officially diagnosed with Migraines and when I got my RX filled I about had a heart attack as this was a new medication, not yet covered and had to pay full price for 9 pills and it was an ungodly amount of money-almost $200.00 at that time! But by then I learned to add to my arsenal Ice packs for my head and neck as they seemed to favor one side of my head it was a challenge to keep the ice pack in one place. So I moved to the bedroom and tried to make that a refuge. When we designed the house I made sure that the only bedroom window was facing North, so no direct sunlight would come through and that side is mostly in the shade, but any light is agonizing. The bedroom was still too light so I got room darkening curtains and tried to make due. Then I got soft over sized eye mask and that seemed to work. I used an ace bandage to try to keep the over sized ice pack in place, but that was a hassle when it was time to swap out ice packs when the one I was using melted and I needed a fresh one.  Plus sometimes I got it either too tight or too loose.  I cleared all nick knacks off my side table to keep meds handy and a glass of water. Then later on to keep a notebook to keep track of when I took my meds and what the pain level was-I started keeping a pain diary of sorts,  and also a small lamp that was adjustable in brightness in 3 clicks-from low on the 1st click to too bright on the 3rd click. I know have a handy organizer tray on my bedside table to keep almost everything I need in one spot. 

Then I painted the bedroom a soothing dark blue, the curtains a dark blue and I installed room darkening shades to cover the windows, and I call it my little cave-my sanctuary. I have a dark blue comforter bed set and when the bedroom door is shut and the shades and curtains closed it’s nice and dark.  At first I liked the room cooler and had a small fan on the floor for white noise. I searched online and found ice packs that would form to the head but it was a narrow one, but I got it anyway figuring it was better than nothing. Then later on I connected with a fellow migraine sufferer and she sent me a skull freezer cap! Kathy has been amazing and I will not share her full name but that we met when she posted on Migraine.com which I have followed for a few years. I don’t know what I would have done without Migraine.com!

Then I started getting a lot of neck and shoulder pain and found that heat worked better than ice so I had gotten one of those bed buddies that you warm up in the microwave. I also made some of my own out of men’s white tube socks and raw long grain white rice to use on other body parts that hurt and felt raw-back, hip, knee, shoulder, and elbow and in the interim on my neck when I was waiting for the bed buddy to heat up. My daughter got me Bed Buddies Heat warmers for the feet. Wow, do those feel great. And I am once again a big fan of over sized loose fitting fleece pajamas. I don’t care what the size label says anymore-the bigger and looser the better. Anything that is constricting adds to the discomfort. Even in the summer I am too sensitive to the temperature and now I found out why. I also have Fibromyalgia and Chronic Fatigue Syndrome. That would explain the muscle spasms, sensitivity to temperatures, chronic fatigue and maybe the daily chronic Migraines. But that is a different story for a different time. I cannot do aromatherapy but I found that lemon oil was suppose to be good for migraines after researching online so I got some and apply it only to my temples and tender spots on my scalp and neck. It warms up and does something-I cannot explain it, but it smells fresh and doesn’t overpower and I can tolerate it. I cannot tolerate lavender oil as it is too overwhelming and for those that are the same way try lemon oil. I have read that eucalyptus and rosemary essential oils are good for sore aching muscles so I might try those at some point down the road. 

I turn on the fan and point it away from me now, but the white noise helps drown out any noise that goes on the other side of the door and through the house. I will pop in my ear buds and turn the volume on low and play soothing meditation music and focus on an object in the room-picture on table or wall or maybe a statue and meditate. Sometimes a 7up will help the stomach instead of water and saltines. When it gets bad eating solid food is out of the question and I know they say not to skip meals but come on! When you’re so sick you cannot keep anything down the last thing on your mind is food. So I try to Zen out, chill out and replenish my ice packs as needed and reheat the hot pads also. If I’m home alone that means I am disrupted a lot. If I’m not then I can ask for help when others are in a fair mood. I try really hard to focus on the positive and when others around me are negative I still try to maintain a positive attitude and if I find it hard to do I focus on trying to block it out because negativity makes the pain worse. I found that out by concentrating on it and focusing on it and realizing that it was true. Being positive does not take away all the pain but it makes the burden easier to bear and being negative or around negative people not only brings you down it magnifies the pain. So meditation and chanting a mantra on staying positive helps and working really hard on keeping that up, and I cuddle with my little dog Paco who turns into a little nurse aide and he keeps a watchful eye on me when I’m ill. He will not leave my side and is extra cuddly and affectionate and gives me the unconditional love that I need the most to help me endure and pull through yet another bad spell. 

If my migraine lets up some to where I can semi-function I will get out my laptop or tablet and connect online to get a pep-talk of sorts. But that is only when I’m up to it because sometimes, well most of the time, when I get online I don’t know how to cut it short. I start seeing topics or conversations and I get carried away. Or I think of something I want to search about and before you know it I have a lot of pages bookmarked that I have to check out later when I’m functioning better. I try really hard to keep technology out of the bedroom as it’s suppose to be a sanctuary, but once in a while I break my rule. That is something I’m working on really hard. I have to admit last week I did really well and I did not take them into the room with me, so I’m making some progress there. But this is how I survive my Migraine episodes. Some of these I picked up on my own by trial and error, some from blogging with others on Migraine.com and from other bloggers. 

I hope I have something in my “Kit” and “survival tactic operations” that might help someone else. This is how I stack and prepare my safe zone as I call it-to feel like my sanctuary to ride out the storms and have most of what I need at fingertip reach. Looking into a very small freezer for bedside, but not very practical at this point, but my ice packs would be a lot closer-not that it kills me to go to kitchen except if the lights are too bright. We have a skylight in the kitchen ceiling-that was a bad idea-and a lot of sun comes through it. 

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

What people say about Migraine Disease that irk me and rile me up. WARNING: Contains dark humor, gross factors, sarcasm and counter attacks!


Those of us that struggle with this Invisible Chronic Illness called Migraine Disease have heard it all and then some. Not once or twice but over and over again like a warped record that you’d like to take and bash against the wall into a million pieces so you don’t have to hear it anymore! You’ve tried to explain it over and over again to loved ones, family and friends. But they don’t listen or they don’t care to or they just don’t get it. Some days you’re just so frustrated it makes you want to scream! But other days your just so battle worn and weary that not only is your body weary and worn out so too is your mind, and you just mentally say to yourself “whatever” and curl up in a fetus position and want to be left alone in silence. We have to just face it-until they experience one themselves they will never understand nor appreciate the pain and the whole body experience one goes through when an attack happens. I have had to unfortunately learn to function at a pain level 6 and will not medicate until I reach a level 7. I’m in quite a bit of pain at 6 and make myself put on a brave face and its taken years to get to this point, its taken meditation and prayer, but I can semi-function but I cannot be overloaded or overstressed.

I have in the past, replied to a few but not all comments (depending on who it is-if it’s family it’s gloves off) with some sarcastic dark humor and off the cuff comments because they don’t listen to me any other way so I figure what the heck. Knock them off guard and counter attack is the best method-deflection has saved me a few times. Once in a blue moon it has not. But it’s been my ally a time or two because it’s made the other person really stop and think and I do believe it’s made an occasional person stop to think how idiotic they are. Well, maybe once.

My pet peeves based on my personal experience:

My biggest one (and everyone’s) you don’t look that sick to which you’d give a tart reply of “oh well hold on a few seconds maybe if I hurl on your shoes maybe that will convince you then”

One that gets me riled is can’t you take an Excedrin for that and get on with it, to which I have replied from time to time “well I tried M&M’s too because they are just as effective-close but no cigar so I had to give them both up and go to the doctor for real help. Mars was not happy but they got over it since they got more customers to take my place and Excedrin didn’t miss me one bit”

I still hear from extended family and friends about a “cure” they hear about or that I should go to Mayo. Again I have learned, slowly, to stay calm and explain “There is NO cure for migraine disease-it is a neurological genetic disease that they can TRY to control with hand me down medications and Triptans to abort migraines from becoming full blown migraine attacks, but again there is NO cure. I hear this is a cure for idiocy, but alas that has failed time and time again (heavy sigh)”

Then the ones that like to judge just how sick you are by the look in your eyes by a number of how sick you really are to which you say “I just medicated earlier so you can’t judge that way” Or I have replied to a couple of people “I figured I better put on my best face so I could give the undertaker a vacation” Or better yet “If I really looked how I felt I’d scare the crap out of you or else I’d be a convincing extra in that new zombie flick that’s out now in the movie theatre”

But how about the ones that say If you get out of bed and get outside and do some yard work or mow the yard you’ll feel much better than lying in bed with an ice pack and the curtains closed to block the sun, to which you reply “Leave me now-I’m practicing to be a vampire for True Blood and your ruining my practice for daylight down-time you irritating mere mortal.”

Or how about what another Migraine AGAIN didn’t you just have one, to which you’d reply “Well, I’m sorry if my schedule and yours isn’t lining up. I’ll talk to my head when it lets me regain control and see when we can pencil you in for a tentative spot, subject to change since I have basically no control”

Or you’re in bed with your head packed in ice, heat pad on your neck, room totally dark, everything shut off, you just finished your abortive med with oxygen therapy and you get the comment “what have you done all day, the house needs cleaned” to which you reply “You just missed the toga party and I’m having so much fun here can’t you see”

And an oldie but goodie, are you going to get up and make supper OR what’s for supper I’m hungry, to which I’d reply “I have my bucket here on the side of the bed-would you like me to reheat it for you and add some veggies for a stew?”

Or yet another oldie but goodie, they email me or come to me and say here’s an article they read I should see to which I replied “That’s from a book I purchased in 2003, so that’s old news, it was a good book I read it a few times if you care to borrow it. Thanks all the same I’ve been researching migraine disease for 25 years and your info is old news so leave the researching to me please I know better what to look for since I’ve been at it for so long”

And still yet, I get all the time about supplements or meds to try to which I respond “Been there, done that, tried that-cannot use that-it interacts with my current meds but thank you all the same leave the research to me and my doctor-we know what’s best for me and what will and will not interact with my current regimen”

They all still rile and irritate me but I have learned to knock them off guard with sarcasm and deflection tactics. Since they won’t listen to reason they respond or change the subject or until they wake up and realize what’s going on, or when they are made to feel like an idiot or the brunt of a joke or that they made a mistake. That gives me a breather sometimes and gets them off my back which is my intention, which lessons the stress which we all know stress is not good for a migraineur especially when you’re in the throes of an attack. If you like any of these feel free to use them or expand on them. Or feel free to share some of yours with me.

If you do not suffer from Chronic Migraine Disease then do not waste your time nor mine by posting a reply to my post. It will not be replied to as it only shows ones ignorance as I cannot make it any clearer as to the fact I am speaking TO MIGRAINE sufferers and the impact the disease makes on THEIR lives!! If you don’t suffer Migraines you won’t get it so move on!

Lion with Black Eye

Or else just sit back with me sometimes with that dazed and bewildered look as you stare at those repeat offenders and wonder just what is really going on between those ears of theirs, besides a wind tunnel. I mean honestly!

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

A New Year, a New Life Change for Better Health-Taking Charge!


New Years resolutions  are easily made and easily broken. Usually they last a week or so. But to make a  New Life Change for Better Health and to actually get down to the nitty gritty, take control of your health care decisions, be more assertive and pro-active is a life long commitment. And if you have not done it by now what better way to start than by doing it as a fresh start to the NewYear!

I made the 1st step by finally taking care of nagging and persistant on-going pain that was nottotally migraine related and finally getting it checked it. At first it was just a little bothersome and I ignored it. Then it progressively got worse that by late summer early fall I could not ignore it anymore. Thanks in part to the great support from the patient advocates and other members at Migraine.com, I did some  research online and started putting the pieces of the puzzle together, adding up 2+2 to figure out that I must have Fibromyalgia. Thanks also to Dr. Marcus for basically reaching through the computer darn near to slap me across  the side of the head to say “duh”. Or at least she should have!. More sensative than prior years to smell, lights, sound, cold, heat. Constant chills, deep muscle aches and sore to the touch. I once enjoyed deep tissue massage but now it hurt like the dickens so I declared NO MORE of that.

My already sensative nose could now pick up smells like a bloodhound and drove me into more migraine fits. I had no idea that Migraine sufferers could also suffer from Fibromyalgia until late last year. Lots of lessons I have learned but lots more on the horizon I fear. My IBS that I was diagnosed with in early 2002/03 was under control with a strict non dairy and non soy diet was now out of control, and I was still on my strick diet. I was ticked but also alarmed until I discovered online that is part of the Fibro. And then when the painful bladder started I thought holy heck (cleaned up the language here) until I read that was also from the fibro. But the Cymbalta is suppose to help with that. So fingers crossed I took my 1st dose on January 8th that it works. My Gerd, also Fibro, seems better since I started this med and stopped the Remeron. Doesn’t work that fast, I know.

My Neurologist/Headache Specialist nor my MD came up with the diagnosis. With my Neuro we concentrated on my migraines which were driving us both batty, so in his defense I really didn’t complain about the complex body aches and pains and all that good Fibro junk.  I had to make printouts and go to my MD and take charge and say “look, I have all these symptoms, they are not migraine related and I seriously think I have this disease. Can you check this out and confirm it and help me and treat me for it? Well, this was in late November and my MD ran a bunch of blood work she said to rule out various other diseases
before she’d “officially” diagnose me with Fibromyalgia and then she’d treat me for it with Cymbalta. The lab messed up on my blood work twice and I have to go in a 3rd time for yet another blood draw for a SED Rate and Lyme Titer before she will even see me again to diagnose me and treat me! Needless to say I’m searching for another MD.

I saw my Neurologist/Migraine Specialist this week on the 8th. He was flabbergasted at the fact I’m not being treated. He said without a doubt with my symptoms and pain points I have Fibromyalgia no questions. He put me on Cymbalta. He said to go through with the blood work because the SED Rate is important and to have all the results sent to him.

But the point is that you don’t sit back and let any doctor treat you  with disrespect, or as less than a human with physical needs. Here I am in pain and suffering and I keep being put off. This makes the 2nd time they called to cancel my followup appointment because of botched up lab work that is not my wrong doing, but yet my “official” diagnosis and treatment is on hold and being held hostage because of lab error and a doctor with rigid inflexible standards and will not take a person suffering into account and help them out in the interim.

But my goal other than to find a competant MD is to work with my Neuro to get off of some of these meds. He took me off of the Remeron right away and is weaning me off the Amitriptyline so I will be off that in a week. The Tizanidine will be taken PRN as the Cymbalta will take the place of those 3 medications. But I’m hoping after I’ve been on that med for a while I can be taken off the Diazepam.

I will continue to research online and if I find treatments or medications that sound promising that I’d like to try I will print them out and take to my neuro, like I have done in the past, and we will discuss if it’s right for me and if this is the right time to try it or if not to put it away for a later date or if he doesn’t like it he will tell me why and we will debate it until one of us gives in or we both come to an agreement. At least with him I can talk to him because he is willing to listen, he’s open to my ideas and input as I’m open to his. We have good communication. I just wish I had found him 25 years ago. But I cannot look a gift horse in the mouth. At least I have found him now all thanks to my therapist-she referred me to him and I cannot thank her enough.

And then I have to learn all there is to know about Fibromyalgia now as this is a whole new kettle of fish to me. I have to  start very slowly on an exercise regimine to control the pain and the very  intense muscle spasms. Night before last I woke up in the middle of the night with the most severe muscle spasm in  the calf muscle. It would not go away. I tried to stretch it and it spread to my hamstring. I laid on the floor to do the hurdler stretch and I was about ready to cry when the bottom of my foot started  to cramp. Yipes! I took a Tizanidine, used hot pads, that morning took a few hot Epsom Salt baths. That leg and foot hurt for a good 24 hours. Yes, I need to start a slow and steady exercise program to make sure that does not happen again.

I have always eaten fresh prepared food made from scratch. I cannot eat anything prepackaged or premade due to chemical sensativities. But I do need to cut back on simple carbs and eat more complex carbs and more fresh veggies and fruits. If fresh veggies are not an option I can go with frozen. I need to stay away from canned to watch the salt intake. I have to limit my meat intake to once a week. I eat a lot of boneless skinless chicken breasts but I have committed to eat more grilled or broiled fish. We got some Salmon fillets and divided them up in portion sizes and froze them. Finally they had a sale on them. Got some other fish as well but Salmon is my all time favorite. I grill all year round, even when it snows. But I draw the line in a snowstorm so then it’s under the broiler in the oven.

I need to meditate more and get more peace and tranquility in my life and try to push away the stressors. If I cannot remove the stressors I need to find better coping mechanisims. I need to see my therapist more often. She has offered to do sessions via Skype for when I cannot drive due to visual aura’s or disturbances so I’m going to have to take her up on that. I need to have a steady anchor in my life that I can count on that can counsel me and keep me on steady level footing and help me cope with the insanity. And I also need to keep my depression in check, as well as my anxiety and OCD. Without seeing my therapist on a regular schedule I have seen how I have slipped back into old patterns of self-doubt, anger, resentment and deeper depression. I am sinking into the despair that put me into the hospital last summer and I cannot afford emotionally nor monetarily for that to happen. I do not want to admit defeat or failure or repeat the same cycle of self loafing and self hate. I must get this under control and do it fast.

I need to focus on doing all of the things above and by doing so I hope to get the migraines under control and the Fibro pain under control and then I can get my life back under control so that I can participate in life and the life of my family and friends. What I would love to be able to go out on the spur of the moment to the stores and go shopping, or go see a movie (taking ear plugs of course and a sweater even in the summer, brrrrrr) or on a road trip on a vacation as a getaway and not worry about getting sick and ruining everyones fun and my being totally miserable. Having an impromptu  cookout and inviting some friends over or family. Or being able to keep up on the housework for a change instead of having the housework bear down on me and seem like a Mt. Everest that I cannot conquer.

This is my New Year, New Life Change Game Plan for Better Health. My Take Charge Initiative is not a New Years Resolution because on this I cannot falter because these diseases will be with me for the rest of my life. And if I fail on my Game Plan and Life Change I will only become sicker and not better. And only God knows how sick and tired I am of being sick and tired! I want to feel well again! I know I cannot regain good health and be 100%, but if I can get 50% I’ll be happy with that! I try to think of the glass 1/2 full. Thinking positive thoughts will bring about positive changes.

Oh, and by the way-Happy New Year.

Stay Happy, Healthy, Peaceful and Safe
Sincerely
Julie

ps
I just got in the mail a survey form for my MD. Hmmmmmm, this should be very interesting how I fill
this out. Got a gut feeling she won’t be getting 5 stars from me, ya think? And neither will the affiliated lab for that matter.

 

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

When Times Get Tough Your Mind Can be Friend or Foe


[youtube=http://youtu.be/IrVIvGr6j4M

There is no doubt about it. When your down and out, when pain wears you down and nothing seems to go your way, how you think and what you say can be in your favor or it can be your worse nightmare. Have you ever been in one of those situations when you went off at the mouth and later on you thougth and said to yourself “what the _ _ _ _ was I thinking! Or what the _ _ _ _ did I just say! Been there, done that. In fact way too many times to count and I really don’t want to relive those times thank you very much.

Our mouths and minds can be our own worse emenies, especially when we speak before we think, and double that on top of pain and sleepless nights and you have one heck of a melting pot of trouble. But have you really taken the time to analize your state of mind, your outlook and how you’ve behaved in the past and present? How you think and how you speak to the way you feel and what comes out of your mouth to your quality of life and if it’s all negative how things always remain negative and your pain does not lessen and your bad luck just seems to get worse and not better?

Have you ever stopped to think that your mind and body connection are one in the same and that how you think and act effect your future outcome? For instance if you keep thinking and saying “oh I will never get a promotion or raise because my boss never likes me” or “I will never lose weight because I can never follow a plan” or “I can’t eat healthy because it cost so much” or “I can’t ever get well because something always pops up”. Then strange enough down the road the more you beleive it and say it, sure enough it happens. Have you ever stopped to think you’ve just been predicting your future because you’ve been negative. Negative inside and outside so you get a negative outcome?

So why not try the reverse. If you don’t have anything posive be quiet or flip it and try to make something positve out of it. Force yourself to be positive. Do this daily until pretty soon you will not say anything negative about yourself in anyway or predict your future or health in a negative way and see what your outcome will be. You might surprise yourself and others around you. You might be a better person and a happier person and more people just might want to hang around you too. And if your in pain it just might make your pain a little more tolerable. Now granted it’s not a cure it will just make things a little more tolerable. What have you got to lose? Nothing. So give it a try. I dare you to focus on being positive. Make a journal from a notebook and start with 5 things each day to be thankful for, or 5 things that are positive. And if you catch yourself being negative start a negative jar and put in $1.00 for a punishment and go back and redo it and make it a positive until it becomes 2nd nature.

You will be surprised and happy at the end results. I know I was. I made 1 phrase on a card, a simple prayer, as my mantra and repeated it when I caught myself about to complain or whine “through God all things are possible” and kept saying it all day and all night. When the pain got at it’s worse (I suffer daily intractible migraines and I can only take abortive meds 4 days a week and 3 days I cannot take any meds at all-cannot even take OTC meds as they interact w/my preventive meds) so I listen to soft meditation music, go to my dark bedroom and pack my head in ice, my neck in warm heat pads, cuddle with my dog and meditate in solitude. On my best days I can semi-function at a pain level of 6 at best and if my pain level goes down to a 5 I want to do cartwheels and count my blessings as the pain never goes lower than that.

I have several comorbiditeis but I can go into that later. But it has made a difference. Positive thinking has turned my world around if only a 1/8 to a 1/4 I will take whatever I can get and count my blessings and not whine, complain or think negative!

Always count your blessings.

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

 

To the Negative Nay-Sayers and Migraine Disease Bashers


This site is not intended for Diagnosis or medical purposes. This is only an account, a diary of sorts of my personal journey and this site is newly created (Nov 2012) and a work in process. There are a couple of other sites that are older and more established since early  September of 2012.

My Migraine journey has been long and hard-fought with many obstacles, of which include many people, including those close to me, There always has been a stigma attached to Migraine Disease that it’s “just a headache”. If it was just a headache I’d be doing cartwheels and going on my merry way. I’d love nothing more than to have a plain old run of the mill headache. But I’m surrounded by family and loved ones that have a hard time accepting the diagnosis of Migraine Disease which is an Invisible Chronic Illness that has no cure. Sometimes it can take over 25 years of experimenting with hand me down drugs that were originally designed for other conditions to try to find the right combination that will attempt to control the disease but it will never cure it. And if you ever find the combination the body over time will adjust to that dose and you have to work on the doses again or start over again. People that don’t experience this disease 1st hand just cannot comprehend this and cannot come to terms with this. They just DON”T GET IT. And it’s a constant struggle. (No “Step” I’ll call you, this is not whining, this is called complaining. Learn to decipher the 2, would you please and get on w/your life)      http://migraine.com/getting-help/

To explain my migraines: Excruciating pain on 1 side of the head most days it doesn’t go down below a level 6 (if it does I dance a jig)  and most days it’s a 8-9, stabbing throbbing-behind the LH eye it’s an intense stabbing pain, the eye is constantly watering-they call it ice pick I call it jackhammer, the LH temple is throbbing, stabbing pain to the LH ear-the LH ear rings and pops-the whole scalp is very sore and tender to touch-the back of the neck where the skull meet is extremely sore & painful-neck is stiff & painful-extends to LH shoulder-pain is sharp and radiating, throbbing. LH eye is partially blind in peripheral vision, any type of lighting makes sharp stabbing pain more intense behind eye and in head. I will have partial numbness in the LH cheek of my face-it will run from the corner of my eye to my jaw. I’ve been trying for the past 2 1/2 yrs to get really dark sunglasses and have failed. At times I have to wear them in the house when the sun is too bright and I have to keep the curtains pulled shut. Going outside is a nightmare. Any kind of strong smell, or faint smell makes my stomach super sensative, off to the toilet even if I take my anti nausea med Zofran they give cancer patients. The smell of bacon frying, scented soap, scented lotions, or laundry soap, hand soap-the house is made scent free as possible because even if my migraine is down to a 6 if I smell something it will trigger a stronger migraine. Going out in the stores I have to stay away from isles that have laundry soap and scented candles because my stomach will start to roll and I have to get the heck out of there. Sometimes if I think I’m doing ok and in the clear someone will reach in front of me and it’s like they put on a gallon of cologne of perfume and I have to make a run for it. Going out for dinner if were inside it’s ok because most places are smoke free now. This past summer this one restaurant was slow so we went on the patio. There were only 2 girls on the opposite side so we thought “Ok” so we sat down and I was sipping on my water. Pretty soon cigarette smoke came drifting our way. Had to get up and leave. I get extremely dizzy with poor coordination. Some of these signs mimic stroke symptoms and they are worrisome but my neuro and Teri Robert from Mygraine.com tell me if I get a headache like one I’ve never had before to seek immediate medical attention.(No “Step” I’ll call you, this is not whining, this is called stating the facts. Learn to decipher the 2, would you please and get on w/your life)     http://migraine.com/migraine-symptoms/

There are a lot of times I cannot form or say a coherent sentence-I cannot even put a sentence together in my head let alone say one out loud. I get extremely confused and flustered. If I try to do something I get lost easy and I’m banned from driving just because of that. If I’m baking and follow a recipe I have to line the items up in a row as they are listed on 1 side of the countertop and as I use them put them on the opposite side of the kitchen because I so easily and often lose my place and get distracted. And to double-check myself I have to mark the item off as I go. A few times I will put chicken breasts on the grill and I will get distracted or just forget about them and have burnt chicken. That has happened more times than not this summer and is very upsetting because I’ve never burnt food before. And I’m getting more and more forgetful about other things too and this is also upsetting. I can see an occasional thing here and there but multiple things every day is not acceptable and it’s upsetting. (No “Step” I’ll call you, this is not whining, just stating facts-you can check out Migraine.com and see others too have voiced the same if you dare educate yourself)  http://migraine.com/migraine-basics/migraine-phases/

Then there’s the food triggers. Everything is a potential hidden no-no. I react to MSG, Soy and Nitrates. Then over the years to learn there are so many hidden names for MSG and Soy I cannot learn them all there are too many so have to take 3 print out sheets to the grocery store. Well that got to be too much so I pretty much go to the point I have to make everything for myself fresh-no frozen, no canned, no prepackaged and no injected or “flavor” added or “flavor” enhanced. So no chicken broth or canned soups-they have MSG and even if they say No MSG added you read the fine print Yeast protein or Yeast extract is a hidden form of MSG. THEN to find out by Diamond Headache Clinic cannot have any foods that contain high concentrations of Tyramine-so more foods to add to the list-nuts, aged cheese, spinach-too many to list. (No “Step” I’ll call you, this is not whining, just stating facts-you can check out Migraine.com and see others too have voiced the same if you dare educate yourself)  http://www.headaches.org/pdf/Diet.pdf

http://www.bibliotecapleyades.net/ciencia/ciencia_geneticfood01.htm

http://rense.com/general92/hidename.html

Now to the person that left me a comment that was negative saying I was “whining” I am NOT whining. This is MY webpage and it’s MY diary and MY account of what “I” had to go through and what “I” had to endure to find out what “I” first was “Thankful” for, Of all things that was what I was whining about? Whatever. But this page is what I had to do to find out my migraine triggers because my list is extensive and also the lack of support that so MANY migraine sufferers endure, not just myself. If “Step” I’ll call this person thinks I was whining because I was getting little support then this person must call an awful lot of migraine sufferers “whiners” because there are an awful lot that do NOT get a lot of support. Then again there are a lucky few that do. But there are a lot of use that have suffered 20+ years with this disease and have learned over this time frame what to give thanks for and we do NOT consider this to be whining! So this “Step” will not disclose full name or email can take that and shove it where the sun never shines. I talk about “my” life. If you don’t like it don’t read it. End of story. Some people. Anyway, Moving along. http://somebodyhealme.dianalee.net/2012/11/giving-thanks-november-headache.html

It’s been since approx 1987 since I had my 1st migraine. In 2010 they became daily intractable migraines and not from medication overuse. I hate taking medicines and sometimes I hold off too long taking my abortive and sometimes I admit I’m to blame if they get out of control. With my recent neuro I’ve gotten better with taking them on time so I cannot be accused of being a drug seeker or abuser-that I’ve made sure of.

But I have tried all kinds of alternative methods-acupuncture, acupressure, pressure point therapy, chiropractic, holistic, biofeedback, meditation, yoga, meditation, cupping, massage therapy, progressive relaxation therapy, guided relaxation therapy and mediation, Botox, vitamins, stretching and exercise,  herbal. Heck I’m ready to go to New Orleans and try Voo Doo. I’m trying binaural Beats brainwaves stimulation again, for the 3rd of 4th time. And even therapy. My insurance didn’t cover the 1st round of Botox and money is pretty hard to come by. Now that I just got Medicare trying to find out if that will cover Botox to try it again. But my current neuro I’ve had him since Oct 2011. He use to suffer from migraines so He’s had experience and I get empathy from him as well as understanding. He is nothing at all like my last 2 neuro’s, counting the one from the Diamond Headache Clinic in Chicago Illinois. He works Diligently with me and has tried multiple medications for preventives and abortive. I’ve taken in articles I’ve found online and he’s always open to discussing them and we debate if it’s a good thing to try now or later or in combination with such and such.  http://migraine.com/migraine-treatment/     He was referred to me by my therapist with my former neuro was treating me like I was wasting his time and he had more worthwhile things to do and when I’d get a migraine cycle he would prescribe me steroids. I hate steroids. I react to them horribly. This neuro knows how I detest them and has promised not to prescribe them unless it’s a last resort. The former neuro was prescribing them like the were M&M’s instead of trying to control the problem by trying different medications he’d just toss out steroids and go back to the same preventive I was currently on. I detested him but loved his nurse. Gina. She was an angel. How she got stuck with Dr. A-holio I have no idea. My current Neuro has a dimwitted nurse. If I could only switch nurses it would be the best. LOL, if only. (No “Step” I’ll call you, this is not whining, just stating facts-you can check out Migraine.com and see others too have voiced the same if you dare educate yourself) http://migraine.com/blog/

I hope everyone had a great Thanksgiving Holiday. It was pretty rough here. My husband started demolishing our kitchen floor on 11-14 so the couch behind the kitchen island got moved 1/2 way into the living room area up to the fireplace so he could take up the laminate flooring. He ripped up the 1st layer of sub floor which is 1/2″ after taking up the ceramic tile (part was coming loose) and found black mold on that 1st layer of flooring. We had a stand up water cooler that holds 5 gal jugs of water & it was leaking all summer & was not noticed until the leak made its way thru the basement drop ceiling. By that time the floor was slowly starting to buckle and tile in that area coming loose. But when that black mold was exposed to the air it took my breath away-I gagged, eyes watered, coughed, gasped and I felt like my air was trapped in my lungs. I had trouble breathing until I backed away. I had no idea black mold affected me that way. After he tore up the 1st layer it went down to the main sub floor 3/4″ and he had to saw that up. Black/gray saw dust went everywhere. He did that in 2 sections of floor. By the 18th he was done sawing, ripping and prying up flooring and was ready to start putting down replacement sub floor. My migraine meter was pegging to 7-8 but he had me hauling 8×4 I think 3/4″ heavy presswood particle wood onto saw horses on the deck so he could cut and we took inside the sliding door and placed so we could then place through the whole kitchen 1/2″ cement board as the new sub floor before the new tile could go down. In the meantime I had to clear out the Kitchen pantry so those shelves could come out and that floor ripped up to, only the 1st sub floor as that was getting re-tiled too and new cement sub floor. The house is a war zone. Boxes all over the great room area with kitchen pantry items. I hunt every day in the boxes for what I need. And every day during the day I try to keep up w/the dust w/those hand-held swifter. By Wednesday he still hadn’t gotten the cement board all down and I had to bake pies for Thanksgiving. Thank God we were not having it here. Ted’s nice sister that lives 20 min away was having it at her house. But I was up until 2 am making pies by the time he was done for the night messing w/the floor. (No “Step” I’ll call you, this is not whining, this is called complaining. Learn to decipher the 2, would you please and get on w/your life)   http://moldsymptoms.org/

My migraine escalated to a 10 Thanksgiving day and heads down in the toilet. My meds were not touching it. My husband was all ticked off at me because I could not go to Thanksgiving dinner. He wore me ragged w/the floor project and the heavy lifting and black mold I was trying to dust-up and vacuum and late nights and late meals because he would not let us stop until he got to a certain point. I was doing all of this w/a high level migraine and keeping my mouth shut ( yes “Step” I will call you I did not and do NOT whine) and didn’t say I had to lie down because my head was ready to explode. He got frustrated and barked at me a few times cause “didn’t you see this or hear what I said” to which I flatly stated “no I cannot hear out of this ear or see out of this eye they are affected by my migraine-remember I get those blind spots and I get the ringing and popping noise in this ear when my migraine level gets this high” then he mumbles and goes back to what he was doing. and here we go again and I have to remind him “Look, you’re going to have to do this on my RH side so I can see and hear better because I cannot see or hear on my LH side due to my migraine-kapish” then he just looked at me like I spoke Yiddish to him. So I had to explain it to him again in slow moe and told him I cannot draw him a diagram right now he will have to understand because the only sign language I know involves the middle finger. (No “Step” I’ll call you, this is not whining, this is called complaining. Learn to decipher the 2, would you please and get on w/your life)

So actually my Thanksgiving started out pretty bad but then when he and my daughter left and my zofran kicked in and my sea bands in place I took my 2nd treatment of Sprix and 15 min of oxygen at 6 liter for 15 min, ice pack on the LH side of my head, heated rice pack on my neck. I snuggled up with my little Paco buddy and slept and  it was so peaceful. Until they got home somewhere between 5-6 pm. By then I was down to a 7. I was still dizzier than heck, and sometimes I get that tunnel vision thing-how you feel when you can’t see anything but what is in front of you. It’s hard to describe but it’s almost like your peripheral vision is gone but your vision in front of you is almost swirling but not quite. I’m glad that doesn’t happen, but when I get dizzy enough and about to play judo with the floor it does swirl and spin and then I go crash boom on the floor and both ears are buzzing and my face feels clammy. So I sit there for a while getting all kinds of puppy kisses. Some times I’ll lie down and put my face to the cold laminate flooring because it feels soothing until the swirling stops. But most of the time I see a blurred double vision. I’m past due on getting my eyes checked but with my migraines so frequent and on the severe side and all the visual disturbances is it really worth it to get them checked? More than likely on the day of my appointment I’ll have a migraine w/visual auras and disturbances and my prescription will be based on that day’s bad vision and I’ll get the RX filled and then on another day those glasses will be rendered useless by another bout of bad visual auras. (No “Step” I’ll call you, this is not whining, this is called stating a fact. Learn to decipher the 2, would you please and get on w/your life and leave me alone would you please)

When my husband and daughter came home from Thanksgiving they decided to go to the UP Mall which is about 40 min away to do some pre-Black Friday shopping. He ordered an out of stock French Door refrigerator to be delivered by Dec 9th. He’s hoping to have the tile and kitchen closet pantry done by then. I hope and pray so then I can try to get some serious dusting and vacuuming done and get the house in order after that. Our old frig has been acting up. It will freeze in the back and not so cold in the front. Time to go. And the dishwasher has not been cleaning well and making a sound like the motor is going out. So he ordered one of those too for store pickup.

On Sunday he started to lay the tile. My head was finally down to a 6 by then. Still pretty painful but my blind spot almost gone but double vision still there but not as severe and still somewhat dizzy. At that level I still have ear popping and ringing but not at the severest level where I cannot hear at all out of that ear. But I still react to smells, sound and light. The smell of that thin-set was pretty gross and my husband was looking at me w/that usual “You have 2 heads” look. He will just never get it. A few fellow migraine sufferers penned it so correctly when they said it best-you have the keen sense of smell like a dog, meaning you can smell things more acutely than other people and from farther distances. And sometimes, and it’s been proven, in the beginning stages of the migraine called Aura Stage there is Olfactory hallucinations where you can smell things that are not there. Check out this link http://migraine.com/migraine-symptoms/aura/ there have been many times I can smell cigarette smoke when no one in this house smokes and our nearest neighbor is 1 1/2 acres away.

So in closing I guess my point in this post is that you cannot “judge” a person and call them a whiner when I’ve been fighting tooth and nail and still fighting to this day to this very minute to combat this Migraine Disease and the Comorbidities that come with it, that exacerbate it and make life pretty hard. But then as the saying goes what doesn’t kill you makes you stronger. In saying that I should remind “Step” as I’ve been calling my critic who calls me a whiner that Migraines over time the more frequent you have them the more likely they are to cause migraineous stroke, so they can be deadly. So in closing they are not “just a headache” and we who suffer this disease are not “whiners” we are trying to get our stories out to others and as a community to support each other and uplift each other and if you “Step” are not a migraine sufferer you do not understand and therefore have no business being on blogs like this and have no business judging people who suffer this disease.

So kindly keep your comments to yourself because you’ve already proved your ignorance once and making another comment would prove you are downright stupid. And if you chose to comment or judge again I might be tempted to post your email address online for all to see. We do have a right to free speech, this is MY site last time I last checked and I can freely post what I see fit and this is the truth as I see it to the best of my ability and to my recollection. If you do not agree then move on along and ignore and forget it. But I do not appreciate being attacked for how my life is and how it’s being played out. You have no right to judge me or call me out for it. I will not stand for and will not allow being attacked. Not in person and definately NOT on my websites. You attack me then expect it in return.

Until next time to my fellow kind hearted and deserving Migraine sufferers I wish you well. I wish you pain free days and make the most of them when you can get them and to cherish your loved ones. And do not tolerate attacks by foolish idiots who know not what they speak of for they are foolish.

In closing I find this so appropriate in response,

Ephesians 5:13, Light exposes the true Character of everything

How my Furry Little 4-Legged Family Member is the Best Therapy as I cope with my Migraine Disease


There are definately divided camps when it comes to preferred companions-cats, dogs, fish, rabbits, hamsters, ferrets and even the slimy and sometimes odd ones like snakes and yep even rats, mice, spiders, snakes-yuck. I’m sure I’m missing some but I prefer to stick with the norm.  I hate creepy crawly things and the abnormal. Not for me, no sireee Bob. My daughter was a true Tomboy. She had the slimy ones-Salamanders, tree frogs, some freaky spiders that thank God she had when she moved OUT of the house a couple of years ago. But unfortunately she had some of those tree frogs when she still lived at home just out of high school and those things are nocturnal and the noise…………. lets just say many a night they almost ended up being flushed down the toilet. Here we are trying to sleep on one side of the house and on the other end this horrible noise from a tiny big mouth frog. During the summer we cannot sleep with the windows open. The noise from those frogs

I cannot remember a time when I was growing up not having a cat or dog, sometimes more than one dog and cat at a time in the house at all times. We were animal loving people. I always had a dog or cat to chase around when I was little and because I was too young to sometimes appreciate how fragile they could sometimes be I would often get paddled on the rump while being told-No Julie, you cannot squeeze the cat or dog until they stop breathing and their eyes bugg out. I eventually learned that lesson to only learn another valuable one-you don’t try to fight a dog over a bone. Oh geese, I was still in diapers and my mom tured her back for one second and we all know that’s all it takes for a kid to get in trouble. And when your only a couple of years old anything and everything looks pretty appealing to you. Even a dog bone. I didn’t get paddled for that one. My mom figured the dog reprimanding me and scaring me was enough punishment. That was a Cocker Spaniel and I cannot remember her name but after that incident I kept my distance when she ate and played with her when she gave me permission. But of course as I grew older through the years and learned more under close supervision how to love and respect our animals we developed close bonds and it broke my heart when they got old and sick and had to pass on. I had always hated that part of having animals when I was younger.

It was when I started getting the migraines when I had dogs of my own when I moved out after getting married and had a child that I started developing really special bonds with them. I remember my yellow lab Willow. When we first got her and two of her liter mates, all three sisters, at first they were all just a bunch of lively loveable dolls that just made the family feel complete and we loved and adored them. I was experiencing migraines at the time and at first I was not really noticing it until my daughter pointed it out to me but Willow would be extra attentive to me and would shadow my every move and would not let me out of her sight. When I would lay on the bathroom floor if I would close the door and not let her in at first she would whine until I’d let her in or my daughter would and she would lie down beside me as close as she could like she was either trying to comfort me or keeping guard over me. She would not leave the bathroom until I would. If I laid in bed with an ice pack she would stay in the bedroom on the floor on my side of the bed. I would call her my babysitter. I loved that dog. She saw me through the passing of my mom, her litter mate both in May 2003 and my dad in March 2005. Then in Jan 2006 she became stricken with acute Pancreatitis. She was so horribly sick. I stayed up with her all through the night and day following her around cleaning up after her. She could not keep anything down. We took her to 2 different vets against my better judgement when I wanted to take her to the one we ultimately took her to finally, but it was too late. She was going into organ failure and I had to have her put down. I held her as they injected her with the medication to put her to sleep and I just bawled my eyes out for what seemed like hours holding her and apologizing for letting her down when she was always there for me when in the end I was not there for her and in the end I let her down. To this day I still miss her and still feel guilty for her getting sick and not listening to my inner voice and taking her to the last vet in the 1st place and being let around by the other vets wasting time and letting it progress to that lethal state. I lost one hellava wonderful friend.

So I went friendless (in a canine way) for a few years and it felt so empty and lonely, especially lying on the cold bathroom floor alone with no cold wet nose to nuzzle me to let me know it will get better soon, or a furry head to rub to feel some form of comfort. I had begged and pleaded with my husband to let me get another dog but he was not giving in. He didn’t want to go through the loss of losing another friend. No one does but the longer you let the loss remain the wounds say open and raw and you don’t fully heal. So one day he finally relented. My daughter had been working on him too and she’d been bringing her dogs over and one was a Min-Pin mix and he was pretty darn cute and his antics wore down my husbands defense. I had never been one to favor small dogs. I had always liked larger dogs but I could not get another Lab because that would be like trying to replace Willow and she was one of a kind. So on a whim I looked on Craigs List and saw this listing for a male 3 month old tri color Chihuahua. The pictures they had online were so flipping adorable and I could not resist looking further into it. He was just a town down the road from us, about 10 min. So we emailed and set up an appointment to go see him. He was adopted but not working out because he was in a house w/small kids and cats and those kind of dogs don’t mix well in that enviroment, so there was a re-adoption fee of $100.00. When we met him face to face it was literally love at 1st site on both sides. I reached for him and it almost seemed like he was reaching out for me. I cuddled him and he just snuggled up to me and nuzzled me like he was saying “hello mommy take me home please”. My husband was sold on him. Before he could get the words out “so do you want him” I almost yelled out “yes”. We went off to the nearest Wal-Mart to get a crate and bed and all the essentials for him. Not that he stayed in his crate at night for long. It was probably after a couple of weeks he was sleeping in bed with us. He’d burrow under the covers and snuggle up against my back giving me a feeling of comfort.

As he grew up he’d continue to snuggle under the covers at night, curled up against my back giving me comfort. During the day he knows when I don’t feel good and he will follow me around. From the bathroom to the kitchen, to the study-where ever I go he’s right there where ever I turn. When I sit down he will snuggle in my lap and give me extra attention. If I accidently close the gate to the bedroom door on him and he can’t come in he will sit there and whimper until I let him in. I put that gate there to keep the other 2 dogs and cat out. If I have to lie down during the day he will come in the bedroom and snuggle with me. Now that our daughter has temporarily moved back in with us and brought her 2 dogs and cat, he loves to play with them and snuggle with them. But if he knows I’m ill he will ignore them and come pay attention to me. He will curl up against me and nuzzle me and give me his little kisses on my cheek or chin and lie with me until I get up or until his “daddy” gets home. Then he’ll play for a while but if I go lie down again he’ll come check on me and he shows his concern. He just turned 2 years old the end of this October 2012 and he’s still got a lot of puppy in him and when he plays he plays till he’s pooped, but he seems to at times put me 1st.

It’s amazing that I have found two dogs in a row that can sense when I’m getting migraines and will go out of their way to comfort me when I’m sick. Now he will act up and bark if someone comes to the door-he has not learned to be quiet yet like Willow did, but he’s still young yet. This is the 1st male dog that I have bonded with and have had such a close relationship with. I don’t know what I would do without him and don’t even what to think about it. I had posted pictures of him on Face Book and had a breeder tell me he’s a Deer Chihuahua. I don’t care what he is. I know I love him and he loves me, unconditionally both ways. He will never judge, critisize, rant nor rave at me. He will not roll his eyes at me and say in an exasperated voice “what, your sick again-when are you ever going to feel better” or “your always sick”.  He really is my best friend of the 4-legged kind and he calms me and soothes me and it helps when I’m in pain to feel him there in bed curled up beside me and I can pet him from time to time and get a little sloppy kiss as his way of saying “it’s ok I’m here and I won’t leave you mommy”. He always has time for me as I do for him. He doesn’t care when I get up in the morning and my hair looks like a rats nest-no, he keeps a straight face and does not roll over and laugh his tail off at me and tell me how horrible I look. I have to wait until I go into the bathroom and screech in terror and turn to look at him and he’s still wagging his tail good naturedly with that look of love and adoration.  And that helps release some of the tension knowing I have him to count on. He is so much more than just a dog to me. My Little friend Paco is part of my family and I dare anyone to say otherwise. I love him because he’s my best buddy and he’s much more than a dog to me.

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Migraine Disease-Why I’m not always as open about it as I use to be. My spouse and his family just don’t “get it”.


My spouse and most of my extended family really don’t listen to me and are not that supportive. I get criticized a lot and told to do this, try this-yada, yada, yada. I only have a few close friends and a few family members that will listen and support me-they don’t criticize and they certainly don’t tell me I’m not doing enough.  With those that have criticized me and don’t listen to me I’m starting to shut them out and build a wall  between myself and them. This has led more to my depression and isolation that was already there to begin with due to this horrible disease.

I just recently turned 50. My only child just turned 27. I’ve been married for a little over 30 years. I have been on a very long, painful frustrating and very misunderstood road. Filled with lots of trials and lots of experimental therapies-through traditional medicine, holistic and alternative. I call myself a Professional Lab Rat. I have spent countless hours of research online until I think I’ve become permanently cross-eyed and read a lot of books as well. I have lost track of how many doctors I have gone through, much to my dismay. I have also tried the Diamond Headache Clinic in Chicago Illinois for about a year. They ran tests, you know, your standard CT’s, MRI’s, blood work and urine tests. All came back showing nothing out of the ordinary. Well, the MRI showed a sinus cyst that they said was of no concern. 


But I have suffered from these debilitating migraines for over 20 years. In May 2010 they progressed into daily intractable Migraines that would make you want to ram your head through the wall and roll around on the bathroom floor crying with no relief in site. Nothing seemed to work anymore. Such agony and paralyzing pain. It was indescribable and to try to tell friends, family and co-workers was like talking to brick walls. No empathy, no understanding. I had gotten the standard comments like “take an aspirin or Excederin and just get over it” or “its just a headache snap out of it” or “it’s all in your head”. Check out this link:
http://migraine.com/blog/top-10-myths-about-migraine/ Well, duh, of course it’s in my head-the pain in my eye was such an intense throbbing, poking, searing pain and the partial blindness that came from it, not to mention the throwing up, sensitivity to light, partial numbness in the face, watering of the eye and sometimes the eyelid would droop, tunnel vision if not total loss of vision in the one eye affected. Super sensitive to smell and noise.  (gee, I wish these blog sites had spell check 🙂


It would get so bad that I had a hard time during and attack of forming coherent sentences, stumble like I was drunk but would be stone cold sober. If I was at work when one would strike of course they would not be happy about it but they’d let me go home-who would want an employee there getting ready to puke in their trash can or run to the bathroom and be held hostage by the toilet. And even if I was not getting ready to have an attack if someone passed by that would splash on an entire bottle of cologne or aftershave would set me off! Even to this day if my husband wants me to fry up some bacon, ewww super gross, the smell of that sets me off. I could not even pump my own gas when I was able to drive because the gas fumes were also a trigger.


The office lights they use are really awful too for me. I can tolerate normal light bulbs but those florescent ones for some reason after a few minutes my eye starts twitching, then throbbing and on comes a migraine. I have yet to find really dark sunglasses for when I venture outside when the sun is out and bright. Yep, I think I’ve become a vampire-shunning the bright light as much as possible. I had suffered really bad hormonal migraines when the monthly cycle hit so they put me on low dose hormone therapy a few years back to stop my menstrual cycle. That has been a little help in that area. I had wanted to have a voluntary hysterectomy but then read several articles online that would make migraines worse in some cases so that was taken off my “to do” list of migraine preventives.


My prior Neurologist did the Botox injections once they were approved by the FDA. The insurance did the precertification and sent us the letter and everything. This was approximately 2-3 years ago. It didn’t help much but I think that the fact my husband took me out shopping right afterwards for faucets and sinks and we did a complete countertop restoration that week for the kitchen and both bathrooms and had to hustle because it was the week of Christmas and we were short on time. So there really was no time to relax and let it set it. Then the aftershock to find out the insurance was not paying or covering it anyway. We appealed 3 times, 1 time to the Indiana Insurance Comission but to no avail. We were out-of-pocket $1500.00.  I really, really think had I been given a chance to rest and not been put through a ringer of moving cabinets and old countertops and doing extra heavy-duty cleaning and more moving on top of the stress of making and baking extra for a large family holiday meal (you know all the extra stress that goes with that because I had those shots the week before Christmas and this project was done the same time) the shots might have had a better chance of working. But who knows? Has anyone out there had good luck with those shots?


In the meantime while all this was going on I was on temporary disability from work starting May 2010 and it extended to full disability. I filed with SS in October per my Family MD. Of course I was denied May 2011. I got a really good appeals attorney to help me file my appeal. In April 2012 I won my appeal and got my SSD. So I got my back pay from Nov 2010 to April 2012 and then started getting my regular monthly SS payments. It’s not much but it helps, which is better than nothing. With my past and present medical history and all my documentation my attorney said I had a good solid case and the fact that my therapist showed up for my hearing sealed the deal for me. I was so lucky in that department.


But my Trials still go on. The neurologist I have now has also suffered migraines so he has empathy and knows what it is like. The neurologist I had  before him was a real jerk. His attitude came across to me like I should grow hair on my chest and “act like a man and get over it”. I really could not stand him! I would call him Dr. A-hole. My new Dr. I call Mr. Nice Guy. Dr. A would  prescribe me steroids at the drop of a hat when I get those bad cycles. I hated steroids cause I react to them really bad. Dr. Nice Guy will not prescribe them unless it’s a last resort, but he’s been working really hard with me. He doesn’t treat me disrespectfully. My last appointment last week as my new abortive he prescribed me oxygen therapy and Sprix nasal spray. The Oxygen has done some good as is the Sprix (new on the market). It’s short-term but I’ll take it. It’s still a long  ways to go but I’m in it for as long as it takes.

  (  I like to be more open and more willing to help others who suffer from the same affliction that I do. We all share the same common bond, we know where we’ve been, what we’re up against and what struggle lies ahead. We all have empathy for each other. We do NOT roll or eyes at each other nor do we turn a deaf ear to a fellow sufferer. I’d much rather get advice from a co-sufferer than a non-sufferer who knows not what they speak of because they have not been there and they have not experienced they hell we’ve all gone through. Call it the sisterhood of Migraine Hell. If you know not what you speak of 1st hand keep it to yourself. That is why I jumped at the chance to do this web blog carnival. Better to share experiences and gain knowledge from others that are in the same boat as I am )
 

Romans 15:4
New King James Version

For whatever things were written before were written for
our learning, that we through the patience and comfort of the Scriptures we might have hope

There is Hope for Everyone out there


Has anyone told you lately that they loved you? If they haven’t then shame on
them. Every single person on this planet is a special gift from God. We are all
God’s Children, no matter what color of our skin, what Religion we follow, or
even if we don’t go to an actual church-even if we only open up his Holy Bible
and read his Holy Word and do unto others and we’d have them do unto us. Even if
others do not reciprocate as we think they should God is up there looking down
from his throne and he is keeping score. He knows the goodness in each and
everyone’s heart, and how it transends to the soul.

Matthew 5:44,
But I say unto you, Love your enemies, bless them that curse you, do good to
them that hate you, and pray for them which despitefully use you, and persecute
you.

He knows we are not perfect and that we make mistakes. He
doesn’t count those against us as long as we learn from them. And if we err
against someone we own up to it and aplogize for it and if that person does not
accept our apology God will and God will forgive us because God is our supreme
Jurer and Judge. If people err against us we are to forgive them even if they do
not ask for it because how can we ask God to forgive us our sins if we don’t
fogive the sins of others. God will judge those accordingly.

Matthew
10:16, Behold, I send you out as sheep in the midst of wolves. Therefore be wise
as serpents and harmless as doves

And if we grow weary in our
struggles do not give up hope for God will sustain us. He will never abandon us.
He will always be there for us and will not leave us as long as we call on his
name and pray to him. He may not answer prayer the way we want him to, but he
answers prayer in his own way in his own time. He has his reasons and it always
works out in the end. God is all knowing and all seeing. We must not grow weary
and give up hope.

Deuteronomy 31:8, The Lord himself goes before you
and will be with you; he will never leave you nor forsake you. Do not be afraid;
do not be discouraged.

There will be days that none of it will make
sense, but trust me, take out your bible when you feel you can no longer make
sense of it all. Mark these scriptures as these helped me the most during my
darkest hours. You are not alone. Do not despair. Do not give up. Don’t lose
hope.

Romans 15:13, May the God of hope fill you with all joy and
peace as you trust in him, so that you may overflow with hope by the power of
the holy spirit.

also

Psalm 55:22, Cast your cares on
the Lord and he will sustain you: he will never let the righteous
fall

These scriptures helped me through my darkness-the depression,
the debilitating Intractible Migraine Disease, PTSD, Panic Attacks. This is also
intended to help a special friend.

Dedicated to my friend Diana I met
this past August

God Bless.

Philippians 4:13, I can do
evertything through him who gives me strength.
Amen

Chronically Ill and Fickle Men


image

Just when you think you can’t get hurt anymore! Your so-called husband of 33+years (Theodore Robert Schreiber the Skunk), since MAY 21st 1982, has gone above & beyond on all his Social Media Outlets: LinkedIn, Google+, FB, and his private Gmail account to make sure there is absolutely been NO mention of being married NOR a name of his spouse, that be me! When I confronted him with that information today, or rather yesterday when I did my investigation, he was of course on the defensive & said it was quote “NOBODY’S business if he was married or not”! Unquote! But he freely listed the multiple real estate properties he listed. He sure is proud of those trophy’s!

That would lead this lowly wife to 1 of 3 conclusions.
1. He’s too embarrassed to admit he’s married to ME because I’ve never been good enough for him in his eyes!
2. He’s keeping his options open for a new girlfriend should he find a right one, making himself feel less guilty by convincing himself he’s ” not that married ” after all.
3. He’s keeping himself as emotionally detached as possible making extramarital affairs more guilt free and more accessible to him by making his profiles as “single”

So I’m trying to get out of this why in the hell is he doing this to me! Putting me through this hell! If he really doesn’t want to be married just Divorce me & be done with it! If your that dam unhappy then why drag it out!

So as soon as I’m feeling a little bit better I guess I will have to be an adult and be the one to file for the divorce! God forbid I keep someone married to me that is just too dammed ashamed to want to admit that to the public! And if he’s afraid admitting being married will scare off future “conquests” then the a-hole had no business being married in the 1st place!

He has been a total waste of the last 33+ years of my life. He has ruined all 33+ yrs; of those years that I will never get back! I haven’t been leading a double life, screwing who I please, guilt free. All this time I could have been with someone else that could have truly loved and cared for me & visa versa! Instead I get emotional & verbal abuse, torment, lies, secrets & infidelity! How many chronically ill people in the middle of a horrible pain attack get to look forward to hearing from their dearly beloved as they come storming home from work, screaming at the top of their lungs when they know a whisper is painful to hear “Get off your Fat, Useless, Lazy Ass and do Something, all you do is Lay in Bed all Day and do Nothing and I have to go to Work and Support your Useless Lazy Ass”!! Lost track how many times I’ve heard that from 2010 to early 2015 while he was anxiously pushing me to go to Arizona as I wasn’t ” doing enough ” in his mind to help myself get better. He wanted me out of state so he could have an easier time to CHEAT! That’s when his text-a-thon happened! 5 days before my Forced departure! He never gave a dam about my health before. Until it would get me out of town and give him more freedom!

He wants freedom, get a Divorce! Instead, he wants to hurt!! Lie, cheat and hurt. Then lay all the blame at MY feet when I get pissed off and blow my gasket at a man that has broken every marriage vow how many times over and made ME out to be the biggest fool and hurt ME in the worse way possible!!

But for some reason, everybody loves a cheater! Everyone supports a cheater! Everyone will back a cheater! The wronged wife is just SOL!! Even my own daughter who should know better support’s her dad. I guess she wants me to have a good dose of the same medicine. Misery loves company they say.

And he’s changed his recent story 4x & puts the blame on ME!! BULL FRICKING CRAP!! NOT MY FAULT HE CANT KEEP HIS LIES STRAIGHT!!

I didn’t deserve this rotten, unhappy life I’ve been unfairly given! I remain faithful and look at my payback! Some payback! Treated like a doormat! But not much longer! Ready to call it quits! I’ve had enough of this rotten BS!!

It’s Been Awhile, a song made popular by the rock group Staind


untitled

Happy New Year

Well hello there. Sorry it’s been so long! It’s been a long and very hard time last year. I’ve had some major set-backs that have made some chronic illnesses more severe, and then I’ve had intensive cervical nerve blocks followed by a couple of rounds of ablations to control my Cervical Osteoarthritis and Degenerative Disk Disease which in turn has toned down my Occipital Neuralgia a few notches. Now that has not cured my Occipital Migraines. Not in the least. It just keeps me less suicidal that when I was in 2010-2011 and keeping me from bashing my head in the wall to try to either dull the pain or end it. That idea always sounded like it would make it better for some odd reason. I think fellow Migraine sufferers that have this horrific pain that starts in the back of the head and feels like Satan himself is drilling relentlessly out your eyeball thinks sort of along the same lines. I’ve had 4 rounds of Botox for Migraines this years + the 2 the prior year. I do not think they are being effective. Along with the medication trials, those I’ve had since 1996 since the present time I had a week long migraine 2 weeks ago. Not a really fun time over the holidays.

Migraine-eye pick pain

 

And the Fibromyalgia and CFS has really been deteriorating into the severe mode. My PCP started letting me do Vitamin B12 Injections at home, 1ml every 2 weeks. Then just 2 weeks ago he changed it to every week. He’s hoping this will help for the CFS. If not he was talking about trying a low dose of Ritalin but I don’t want to go that course. My Cymbalta was increased from 30mg to 60mg and added Lyrica back 50mg 3x a day. That helps with Fibromyalgia and Chronic Pain.

pulling-hair-out

I have been trying to stick with therapy but have had medical issues and medical crisis interrupt my schedule. I hopefully plan on 2015 being a better year as my PTSD and Major Depression are not getting better. And my therapist helps with pain management. My Diazepam was changed from 5mg to 2mg. I take 2mg in the am and 4mg in the am. Helps with my PTSD and Anxiety/Panic Attacks. Yep, those still plague me.

meditate

My SSD comes up for review this coming December 31, 2015. I just happened to come across my SSD Court Decision papers and I emailed my SSD Appeals Attorney what I do. So I’m waiting to hear back. I’m still in constant pain and the severe Fibro pain, CFS and Migraines make it hard to even work at home. I try but I need some help every so often from my BFF of over 30+ years. Very depressing to need so much help.

Migraine zombie

I belong to CMA and a few CMA branch FB support groups. I started my own FB support group: Making all Invisible Illnesses Visible. There are really awesome members in all groups, especially mine. I have pretty cool fellow co-administrators. If not for ALL these groups support this past year, my BFF and my Bible Study Group, I would have lost my mind and ended up hospitalized again. Normal people just don’t understand how bad Chronically Ill people feel. We don’t make this stuff up. We’d give ANYTHING to be more productive!!! It is NO FUN being sick all the time!! We hate this way, WAY more than you normal’s hate it!!! And all we ask for is a little compassion and empathy! Not hatred, sarcasm and spite.

This is all I can write for today. I’m exhausted. The Insomnia has been acting up again. I wish you all Peace, Love and many Blessings. Julie. xoxoxoxoxoxoxoxoxo

http://youtu.be/oT8awm90zl8

“Hard times build determination and inner strength. Through them we can also come to appreciate the uselessness of anger. Instead of getting angry nurture a deep caring and respect for troublemakers because by creating such trying circumstances they provide us with invaluable opportunities to practice tolerance and patience.”
Dalai Lama XIV

The Dark Side


2013-09-20-11-09-27[1]

2-17-14

Chronic Diseases bring out The Dark Side in everyone. The person suffering one or multiple Chronic Illnesses (until they recognize and correct their attitude-if and when they do) family, friends and significant life partners-loved ones, co-workers, bosses, clients (customers) health care providers (nurses, receptionists, doctors, PT therapists, nurse practitioners, massage therapists etc). Anyone and everyone in the public and those in support groups-Facebook, Twitter (etc).

Egos are at play, how people are raised are a major key issue. Were they in a loving, stable, emotionally secure family situation. Or was it unstable, emotionally lacking in love, emotionally abusive by one or both parents. Was one parent an absentee parent-always missing to avoid the other parent due to issues in the marriage-lack of a true loving emotional bond, or to avoid confrontation to the dysfunction family situation due to their “own” dysfunction family upbringing. Or missing due to being the sole bread-winner, death, divorce or non-traditional marriage/relationship as in the past year status quo? Some dynamics in relationships and personalities in people make them seem almost emotionless, backstabbing, unloving, unstable or downright evil.

evil

So why do people act this way? Why do people reject those who are chronically ill? Why do they choose to disbelieve those who are chronically sick? Why do they always put those who are sick to the test time and time again, and yet those who are NOT sick seem to get away with anything like calling off sick from work with hangovers or trivial things, while those who are truly sick are discriminated against enough for employers to legally get away with it. Sometimes to the point of pressuring employees to quit so they don’t have to fire them, getting away with not having to pay unemployment and thus not having to come under fire with breaking any discrimination laws.

That was how I “forced” to leave my job. That and I was indeed becoming more chronically ill at the same time. I do believe my cesspool of a job was triggering my illness to come on at a rapid speed. Not that it wasn’t there before simmering and boiling and occasionally acting up on occasion giving them fuel to toss onto the slow burning fire. But I was a longtime loyal, dedicated, hardworking employee with morals and standards. I did not believe in what had become the new “norm” called brown-nosing instead of actually working. The so-called “team leaders” got their jobs that way instead of actually earning their jobs, and they kept their positions that way, making us peons do the dirty work and they took the credit while they shopped online at Amazon, eBay and checked their own Facebook and Twitter accounts, or texted on their cellphones to each other or their then boyfriends who became husbands or live in significant other half. occasionally we’d have to work out-of-town on “jobs” and on the way home after injuring my shoulder I started to complain of pain. The “team leader” was so busy trying to text her boyfriend whom she must have been afraid was doing something other than what he said he was doing (she was texting him during the “job” too but was I allowed to say anything afterwards-NO) and on my other side was the mother of another team leader who had to stay “mum” as to “protect” the business you know. Well the next business day (this job was on a Sunday) I reported my injury to HR. Well later in the morning I was told that since I didn’t report it ASAP as soon as it happened I could NOT file workman’s comp for on the job injury. When I stated I did complain I was told that lo and behold “no one recalled my saying anything”. Then HR said she had to quote “do what she had to in order to protect the company”.

evil-eye

So goes to show when someone wants you out of the job, out of their lives or make it as hard for you as they want (intentionally or not) there may or may not be much you can do about it. As for my job as the pressure on me was increased I had my doctor put me on FMLA then Temporary Medical Disability which was extended. I then filed for SSD. I was denied. My husband was against my going on temporary disability and FMLA. I got NO emotional support from him at all as my disease progressed from episodic to intractable daily occipital migraines and panic attacks. He did not and would not understand. Stems back from the childhood he was raised in. This was really brought home again this weekend after he was gone for a week in Florida.

I got a Total Gym Platinum Plus with 8 attachments & 4 DVD’s to duplicate the pulley exercises I learned in PT last year. I have bad Fibro, CFS, Peripheral Neuropathy as well as long-standing Occipital Chronic Migraines, Occipital Neuralgia, DDD, Cervical Osteoarthritis, etc. I CANNOT do strenuous exercise as I’ve told him time and time again. Someone else in his family has fibro and it’s always poor so and so. She doesn’t do anything major around the house-her poor hubby who is a saint does, w/o complaint or thanks does and his health is not that great does so-does he get credit. NO. Does he drop the F bomb when he does so w/o being asked. NO. I have several issues and several food intolerance/allergies and I cannot help it I have chronic diseases that prevent me from doing things-like mowing almost 2 acres-granted I could not do for most of last summer, but SHE has NEVER mowed. But I get hell for not doing a lot and when someone “else” around this house (he) has to do something the “F” bomb goes off like crazy as well as a slew of other blue words and negativity galore. Of course in that household as they were growing up chronic illness was NOT tolerated as 1 child was blacklisted and outcast due to a serious illness (life threatening asthma) by her own mother who raised 2 of her children to hate the 1 who had the asthma, and turned them against the sick one & still to this day blames her OWN daughter for disrupting mommies life with being so sick as a child!! She blamed her for everything-for things that went missing-she must have taken it-even as an adult when she moved out of the house and was never allowed a key, somehow she mysteriously vaporized into the house and took valuable rings (that mother dearest misplaced & later found but no, no that could not be bad sick daughter that disrupted her life took them & must have come in when she wasn’t there & put them back, geese) It’s a wonder she let her live to adulthood! Anyway I’ve been made an outcast also, just to give you and idea why giving you a “taste” of the family history. Anyway my Total Gym isn’t good enough for him so it’s just not good enough so I have to send it back I was told as it was “junk”. Well Bull flipping #hit!! NO #ucking way am I sending it back!! It’s set up on 6 month easy pay. It’s in the convenience of my home so with my CFS I don’t have to worry about falling asleep like I did w/PT on the way home or during my sessions and if I get too fatigued during my workout I can pause and start-up later! I’m tired of making some thick-headed insensitive dense people understand. I will continue and try NOT to be bitter, but I do need my outlet and to vent. Thank you for letting me do that here on my safe haven. But it still feels like a daily battle of good vs. evil.

good angel bad angel

As for social media you come into that as well unfortunately. There is a pecking order sometimes and you come across those who may feel jealous or feel more superior to you and want to push you to your limit or others that you have come to love and admire. And a few years ago if you had asked me if you can build real lasting friendships on Facebook I would have laughed in your face and said hell no. But now I’m here to say you most definitely can. I have met some really amazing people on Facebook through some support groups I have been a part of and I’m still in. One I can speak of as its public but restricted as you can only be invited into is Chronic Migraine Awareness-CMA. A couple of others I’m just a member of are Migraine related are private and by invitation only and I cannot mention those names. They are pretty awesome. 2 groups I am co-administrator on and they are private. There are some really amazing people in those groups and I have made some really super amazing friendships there and some really close bonds the past year or so. I have also had a few clashes with a person or 2 that were not solely about building people up, but about power struggles, superiority, ego bashing, back stabbing-it was almost like my toxic work situation all over again but in cyberspace. Just when you think you find a safe haven……………………………………………… Moral of the story is you can trust but at the same time watch your back and always, ALWAYS trust your instinct. If your gut is telling you something is amiss, trust your gut-it is rarely wrong. Save yourself from an ensuing bloodbath and free-for-all that will be up for public display that is out of your control.

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Values

Until next time sending you all blessings, love, hugs and prayers. Julie

DISCLAIMER:

Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and I enjoy sharing experiences and news about Chronic Pain Conditions. Please consult your own health care providers for advice on your own unique situations and do not take any information on this site as a Diagnostic Tool or Procedure for your signs or symptoms. I will not be held liable for any misinterpretation you may misconstrue from any presented information on this informational only page.

The Life of this Chronic Migraine Sufferer: Like a Soap Opera many Plot Twists and Turns


imagesCA4KQMCL

11-7-13

When life throws you for a loop, after years of fighting chronic pain, you either curl up in a fetal position and take it or learn to stand up and fight back. After years of fighting Migraines, then tossing in SVT, IBS, OCD, SAD, Depression, PTSD and add FM and CFS for good measure and stir up the pot and let it simmer and stew you have a nice Chronic Invisible Disease Stew sewer sludge. Add to that lots of Stigma, idiots who like to throw in 2 cents worth of advice they really cannot afford to give away as they have no idea what the heck they are commenting on, or for that matter, they have no education or knowledge on the topic they are knocking or giving so-called advice on, and the stew of sludge just simmer and boils more. The chronic pain builds and no relief. The anger over the idiots and retards with their so-called “health” advice over neurological and genetic conditions and the Stigma just abounds and astounds me more and more.

http://migraine.com/blog/invisible-illness/

http://stanfordhospital.org/clinicsmedServices/COE/neuro/headache/patients/faq.html

http://www.ninds.nih.gov/disorders/migraine/migraine.htm

http://www.helpforheadaches.com/articles/mx-stroke-risk.htm

Couple that with the idiotic uneducated so-called “expert” specialists I’ve seen over the years who have not only mismanaged me but mishandled my so-called healthcare as well. I’m not a slouch, not a “couch potato”, not a “junk food addict”. In fact I go out of my way to avoid fast food. I avoid a slew of food triggers-high tyramine, high histamine, MSG and hidden sources, Soy and hidden sources, Gluten and hidden sources, Dairy and hidden sources, Red food dye, Nitrates and Nitrites-all proven food triggers for me for my Migraines and IBS/Fibro triggers. I have strict food control. I cannot eat anything pre-packaged, frozen, canned, dried-I must eat everything freshly prepared. I have to steer clear of most chicken and turkey products that have “chicken broth” injected as that has MSG even though it says “no MSG” added there are “hidden forms of MSG such as “yeast protein” and other hidden sources. The food manufactures can get away with the outright lie of saying NO MSG ADDED as long as the words MSG do not appear on the label, but they can use other hidden sources. The “truth in labeling” campaign does not exist. Same goes for Gluten and Dairy. I have been more careful the past 10-15 years of what I eat than I have ever been. So I dare anyone to tell me to eat any healthier! Bah to them I have gone Caffeine free even after years of being a coffee and cola addict. And nix to chocolate, even though it hasn’t proven to be my trigger why take any more chances. Why toss gas to an already raging fire I say? Better to eliminate all known triggers and any and all “possible” triggers to be safer than sorry.

http://www.tacanow.org/family-resources/hidden-sources-of-gluten/

http://rense.com/general92/hidename.html

http://naturalandfree.blogspot.com/p/alternative-names-for-soy-and-soy-free.html

http://www.balancedconcepts.net/3moprog/dairy_sources.pdf

http://www.red40.com/pages/foods/index.html

So when ignorant people bash Migraine sufferers about diet at first it irritates me, angers me, then it just goes to show how stupid they are and how idiotic they are because they really don’t know. They don’t know how restricted our diets are and how careful we have to be and how much we have to cut out and how much we have to be careful and how we have to be wary of every spoonful, forkful and every meal is a challenge. Every holiday is an ordeal, a challenge and a major obstacle to those of us who cannot eat what others take for granted and call “normal” holiday fare as it will put us in a major tailspin and make us so horribly sick and not just with unspeakable horrible head pain. But also unspeakable visual aura’s, sensitivity to light, smells, sound-dizziness to rival that of a drunken spree (not that we’d know as alcohol is forbidden and on the no-no list) balance issues, trouble making sentences, bowel issues, sensitivity to temperatures (chills or episodes of heat spells) clamminess, numbness in limbs or face, symptoms similar to a stroke. Migraines are in fact, despite constant how often many unbelievers dispute, they ARE genetic and neurological and they can be severe enough that they can cause strokes. If someone is going to comment on someone’s blog, PLEASE take the time to get some education FIRST on the subject matter BEFORE you spout off. You don’t want to show off your ignorance anymore than what you already are. I mean, why shoot yourself in the foot on the Internet for all the world to see?

http://migraine.com/blog/top-10-myths-about-migraine/

http://www.healthcentral.com/migraine/cf/slideshows/10-things-not-to-say-to-a-person-with-migraines?ap=830

http://www.migraineresearchfoundation.org/about-migraine.html

http://www.americanmigrainefoundation.org/about-migraine/

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/vestibular/conditions/vestibular_migraine.html

And all this while being the good patient that I am, keeping my Migraine Diary and Abortive Medication and trigger logs (including weather and the dastardly Barometer Pressure log) and taking my research in and discussing it and making my notes, being very studious and diligent and taking my instruction well. Also making my concerns being heard very plainly the past few years-the intense stabbing behind the eye that was relentless, the chronic neck pain increasing over the years to the point of crunching sounds and limited ROM the past few years. The frightening and increased lingering side effects from each Migraine attack that would linger and the length of each attack that would get longer and blur into each other until it seemed they were nonstop and never-ending. Last year I begged my last neurologist who I thought was empathetic, after all he professed to also be a former Migraine sufferer himself, to try Occipital Nerve Blocks on me. Nope, no he said I didn’t need them-after all he said that didn’t seem to be my problem. HUH?? My migraines were predominantly in my occipital area and were horrific in pain and my migraine abortive meds would not even touch the pain when it got geared up! No he said I needed to try Botox. WTH??!! The frosting on the cake that ended it all for me with him was this past July. It was a Thursday almost 5:00 pm. I tried calling and God forbid anyone answer so close to closing time. I had one of those God awful Migraines that I wanted to dig my eye out and bash my head into the wall. I took everything I could and it would NOT touch the pain. I got this after hours answering service. The one woman was a real #itch!! Snotty, rude, hateful and obnoxious. Not helpful in the least. She said that the Doctor tried to call me back. Bull-fricking crap!! She said the Infusion Center would have to take care of me. Well great. What is the phone number, where are they located, how do I get there and what are the hours? Well they were not allowed to give me that information! WTF!!!! Friday the doctor’s office was closed. My husband was off work. He was making calls for me since he and my daughter witnessed my meltdown as I swore I would not make it through the night with the pain. I was told to go to the ER. Oh no. Not be treated like a drug addict after waiting for hours in those bright lights, loud noises and rude people after driving for over 30-45 min 1 way. Not going to happen. Take me to the funeral home 1st and bypass the ER.

Funny-doctor-cartoon

So my husband finds my now current Pain Management Doctor on the Internet. The PM Dr. tried like heck to get me in ASAP but since my bunghole neurologist/joke migraine specialist was closed he could not get copies of my office notes. So I suffer through the week. And boy oh boy did I suffer. Monday out of the blue my quack Neuro calls with info to get me to the Infusion Center. About 4 days too late, but I was still in a bad one so I go to the hospital 4:30 pm that Monday for about 5 hours and my husband picks me up. That was the only time I heard from my Neuro. A day or 2 later I get into my new P.M Dr. What an answer to prayer he’s been. At first he was not going to take me because of all the quacks I’ve seen and what he “thinks” they’ve done for me. But as he interviewed me he found out they just used me as a pill Pez dispenser basically. They never listened nor took seriously my severe eye pain or neck pain or other complaints of intense Migraine/Head pain. He ordered an MRI of my neck and did some probing. My next visit he did Bilateral Greater Occipital Nerve Blocks and the horrible Occipital Migraine I was getting instantly went away. I went Ah Ha I knew it! My MRI was back I had damage to my C4&5 disc and diagnosed me with Degenerative Disc Disease, Cervical osteoarthritis and Occipital Neuralgia and Occipital Migraines with Chronic migraines. Since then I’ve had several Cervical Nerve Blocks, Nerve Ablations. I’ve had my medication changed and reduced from when I was with the useless neuro. I’ve had PT to work on my FM and neck ROM and have an at home Cervical Traction Unit.

Mental-Health-Humor-Medication_cartoon-a-thon_7_500

I’m a far cry from being stabilized but I don’t have as many disabling occipital migraines as in the past, although this past Monday I did have a severe one that had me in a non-stop nauseated and vomiting stage and my prescription Phenergan with Benadryl was not working. Thank God my sister-in-law and brother-in-law that live 10-15 min away were able to drive me to my P.M Dr where he was able to do Bilateral Nerve Blocks on C2 Cervical to stabilize that horrible Occipital Migraine. It’s been a long, long time I had one that bad where I was actually throwing up. And it’s quite embarrassing to get car sick to boot, especially in front of family like that. My Dr. from heaven did tell me he could eliminate possibly 35-40% of my migraines which to me is a Godsend. I’ll take it. I know there is no cure and he never promised a cure. My spouse is ticked I’m not “better” or “cured” in his eyes or mind but I do have the Fibro issue to contend with which now is putting me through hell. The chills are hard to contend with and it’s adding to the migraine factor and it’s making my IBS go haywire even with keeping tight reigns on the diet. I’m learning more about This Fibro and CFS as I go along and it’s not nice. It makes for a nasty mix to the factor. When I was doing PT I could not exercise as long nor as hard and heavy as I wanted to because I felt like I was going to pass out from pure exhaustion and I’d feel like I was ready to fall asleep on the exercise equipment, or on the way home or as soon as I walked into the front door. And I found I could not recover from that exhaustion. You can’t sleep through the night, you wake up exhausted, you can’t take a nap as your eyes don’t know how to close, you fall in bed at night exhausted, but you struggle to try to fall asleep and stay asleep. Yep, the nasty side of Fibro and CFS. Sleeping pills, antidepressants to make you sleepy-they don’t work-they just add to the side effects. More side effects-that’s all I need. NOT. Maybe a rubber mallet by the side of the bed to hit myself so I can sleep and a bucket of ice water in the morning to wake up with??

migraine witch

I’m not drinking caffeine to keep me up, nor alcohol, nor chocolate, nor sugar. I’m not eating carbs, or heavy meals at night. Actually I’m having a hard time eating much at all. With the stomach and digestive issues not much settles well so I am almost scared to eat a lot of food and when I do get a migraine I’m afraid to eat too much as I’m afraid of it coming  back up. This past Monday I could not even keep down clear liquids. I finally ate solid food about 6:00 pm and kept down clear fluids about 4:00 pm. That was a good afternoon after a really bad start for me. I try not to push it too much. Light protein, very light, and lots of water when I can stomach it and if I feel nauseated I cut it off. As one blogger ignorantly replied to my post I cannot do honey, I don’t do sugar of any sort and honey is way too sweet. And I have to be very careful of fruits and vegetables-those in the high Tyramine and high histamine category are a no-no. Research your fruits and vegetables before you dare lecture me on what I should consume as I avoid my migraine triggers at any and all costs. Even though I’m caffeine free I will take a shot of it to help my migraine abortive medication get a kick-start. Some medications do have caffeine in them to make them more effective.

http://www.migrainetrust.org/factsheet-migraine-triggers-10505

What is interesting too is that we often get picked on that were lazy, couch potatoes, when it’s far from true. Many profession athletes suffer from migraines and I dare anyone to call them lazy or couch potatoes. Go ahead, I dare you, as well as many motivated famous people who lead active lifestyles:

http://www.northshorelij.com/cushing-neuroscience-institute/news-events-multimedia/anthletes-and-migraines

http://www.migraines.org/myth/mythgood.htm

Be that as it may, the Internet is all around us. Almost everyone has a smart phone now, even middle school kids have access to them, as well as tablets with Internet access and just about everyone has Internet at home via a PC, Tablet, smart phone, integrated TV and many people spend hours surfing the net either on social networks or blogging. Some people even do useful things like researching health topics-imagine that! Using a helpful tool to actually gain knowledge on topics that either relate to themselves or a loved one. So maybe while your on someone’s blog instead of replying with useless unrelated BS replies, people could get their heads our of their rumps and actually research to learn something for once BEFORE they reply and make an educated stance. Or else they will just sit there on their brains and starve them from oxygen and make useless and pointless and illogical replies that do not apply to the topic at hand. The choice is yours audience. While you have a piece of technology in your hands so powerful, make use of it and LEARN. Make a difference if not in your own life then in someone else’s. I will not let the idiots hold me back. No, I will continue to rise to the challenge. I will retort when someone makes the stupid idiotic remarks that Migraines are just headaches! Excuse me-but what idiot just said THAT! And say that to my face and not  behind my back like a sniveling coward that you are!! State your full name and your email address for a reply!! If your going to make comments like that stand up behind them or shut the heck up and stay off my blog!! Same goes for my FB page and my Twitter. If you can’t back it up then shut up and stay off! I don’t bother you with such idiotic BS so don’t disrespect me in that way.

Idiots-are-Everywhere_001

 

Next time I will share my recipe for homemade organic body lotion. A hobby I learned over the summer that came about over my experience with aromatherapy and from a fellow FB supporter.

Until then to all my fellow sufferers in all avenues and all areas of Invisible Illnesses Diseases, be what they may, I wish you peace, pain free days when you can get them (and cherish them when you do)  and many blessings. Just because you cannot “see it” does not mean it isn’t real and it doesn’t exist. One day we will get that through society’s head. Until then we will all band together and stay strong.

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DISCLAIMER:

Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing experiences and news about Chronic Pain Conditions. Please consult your own health care providers for advice on your own unique situations and do not take any information on this site as a Diagnostic Tool or Procedure for your signs or symptoms. I will not be held liable for any misinterpretation you may misconstrue from any presented information on this informational only page.

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Dealing with Chronic Migraine Disease, Depression and tackling the topic of Suicide


gothic

(7-18-13)

Everyone that experiences Chronic Migraine Disease and other Chronic Pain Diseases, know all too well that along the long and bumpy road of Medical Care and Self-Help, there will be many stumbling blocks and pot-holes that we come across and must find a way to navigate and deal with these issues.  For us seasoned Veterans in this ongoing war we should be use to these setbacks, and we do expect them and for the most part we can get around them pretty well. But once in a while you get thrown for a loop and try to struggle to recover and march on. Or rather, ease on down this long and difficult road.

gothic-anime-awaken-candles-dark-fantasy-girl-gown-mist-416644

For those of us who suffer this disease there are many Comorbid Conditions that go hand-in-hand with Chronic Migraine. It could be Fibromyalgia, Chronic Fatigue Syndrome, Depression, PTSD, IBS, Lupus, Lyme. I could just go on with many other devastating diseases but want to focus on my key issues for now. Chronic Migraine Disease, Fibromyalgia and Depression. I have a few others but these right now are my main areas of concern/problems.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3008936/

As most of you know by now that have followed me, I have suffered Migraines for over 25 years. They started out as Episodic and turned Chronic in 2010. I get them daily and no matter how many identified triggers (of which my list seems to grow in leaps and bounds lately) and alternative therapies I use in conjunction with Medical Care and Medications, there seems to be no relief.

gothic_039

Since 2006 I’ve seen 4 Neurologists, 2 Gynecologists, and 2 GP’s. All this time I have always complained about constant neck pain. I’ve actually had neck pain longer than that. I was in a car accident in the mid 80’s where I suffered whiplash from being rear-ended by a negligent driver. At the time they didn’t think it was serious and through the years I sought Chiropractic care that would temporarily help the problem but it never eliminated it. It would always come back a day or 2 after treatment and even with my doing cervical exercises at home and neck strengthening exercises, to no avail the pain persisted slowly getting worse over the years. For about the past 10 years I would hear crunching in my neck when I would rotate it and I could never fully rotate my neck to the LH side as it would hurt and pull, becoming more painful the further I’d rotate, to where eventually it felt “stuck” as it would not rotate further. My rotation to the RH side was not impeded. I did have a great Chiropractor in Bridgman that did take the time to x-ray my neck and showed it curved the opposite way of what it should. She worked tirelessly on my neck, doing accupressure and trigger point stimulation. It was feeling a little bit better and sadly this Chiropractor moved away and I could no longer get the care I was accustomed to. Good Chiropractors are hard to come by, as is Medical doctors.

Doctors

About 8-10 years ago I suffered an injury to my shoulder. I suffered a small tear in my rotor cuff as a result of falling down my basement stairs on my back all the way down the entire length. I unwittingly put my LH arm up and out to try to stop my descent and that arm ended up being twisted behind me. Stupid me thought I could go to work as the panic wore off and the adrenaline, I was sitting at my desk and the horrible pain kicked in. I had to leave and get an x-ray and then be referred to an Orthopedic Specialist who gave me Cortisone shot and PT to strengthen my shoulder. The tear was too small for surgery but big enough to require injections, which were pretty painful. I’ve had those before in my hip for Bursitis and in both heels for heel spurs and those didn’t hurt. But the one in the shoulder hurt like a son of a hockey puck!! I had prescription Motrin to help w/the pain.

baby face  crying

All during this time I was a guinea pig trying all kinds of medications and alternative and traditional therapies for Migraine Prevention and treatment. No combination seems to have helped so far. And all this time I still complained about neck pain but it was always glossed over and ignored. I was told “oh, it’s a part of the migraines-the migraines are causing it. I let it pass, like a fool. About a month ago after having a really bad experience with my current Headache Specialist who is a Neurologist, I sought out the help of a Pain Management Specialist. I was desperate. The neck pain was getting worse, even though I’m currently in PT and they assigned me a home cervical traction device that helps only temporarily. This doctor finally took my neck pain complaints seriously and ordered an MRI. I got my results last week and I have DDD-Degenerative Disk Disease in my 4th and 5th Vertebrae. I have arthritis settling in as well. I have some spurring and cartilage missing. And also the jack hammer ice pick Migraines I was having that no one else would pay attention to-well he finally did and I got a Bilateral Occipital Nerve Block. I was fighting one of those monsters and getting nauseated while waiting to see him on that day. Within seconds of those injections the occipital pain went away as did the nausea. He is waiting to see the results of this step before he will proceed with zapping those nerves. This coming Monday I will get more nerve blocks in my neck-Trigger Point Injections, to help with the neck pain I pray.

imagesCA95GB5C

But I have suffered another set-back. Even though last week I was finally seeing light at the end of the tunnel, my Depression had to make a rude reappearance, and it made it big time. I thought it was under control with the meditation and other holistic approaches I was taking, but I do believe it started to skid out of control after my lack of care from my recent former Neurologist-he was not available for a major migraine due to medication withdrawal as he didn’t want to be quote “contacted for Migraine emergencies on a Friday” unquote from his answering service. And I refuse to go to the ER with a migraine and be treated like a drug seeking addict. So I had a major meltdown in front of my husband and daughter. Up until that point they never took the pain I was having serious until that night. I was at the end of my rope with all the chronic, improperly treated Occipital Migraines and neck pain. Even though this new doctor is helping this Depression is not letting up and seems to have gotten worse. With the Fibro and CFS the Insomnia has been really bad again. To the point I’m getting more forgetful, more clumsy, more touchy and more in the dumps. I can’t shake it off. When chronic Insomnia builds up it really damages the psyche over time.

http://www.webmd.com/depression/guide/treatment-resistant-depression-what-is-treatment-resistant-depression

goth angel

When you are down and in your weakest point emotionally and physically, it’s easy for the dark thoughts to take over and crowd your mind. If the Depression is left untreated it can become really dangerous, especially if one has a history of entertaining thoughts of ending it all because the fight is too hard to maintain over a long period of time, and you just get battle weary. Battle fatigue sets in along with the chronic fatigue and pair that with poor medical care and poor pain management, well that is like throwing gas on a raging inferno if left untreated and unrecognized. After dealing with this for so long you think I would know better by now, but the subconscious mind is very powerful and oftentimes hard to break free from. And I don’t care how religious you are, until you suffer the unrelenting pain of horrible daily Migraines, if you haven’t been there you have no idea and have no right to judge that a person is not “Christian” enough to battle the demons of Depression. Support groups are essential for those in Chronic Pain. But recognizing and validating the pain someone is going through is sometimes better medicine than you could ever imagine.

http://blog.advancedmigraine.com/blog/bid/297694/Fighting-the-Blues-Chronic-Migraines-and-Depression

depression

The Social Stigma for Chronic Migraine Disease, Fibromyalgia, Chronic Fatigue Syndrome and importantly Depression has got to be put to an end! It’s the stigma and public perception, as well as the poorly educated Medical Profession, that makes people become more desperate and sink deeper into despair.

http://www.webmd.com/migraines-headaches/news/20130627/migraine-sufferers-face-significant-stigma-study-finds

http://youtu.be/TlAZKbMz3Lk

And if left unchecked and untreated it is an all-consuming anguish that some people think the only escape from the pain is to end it all. They cannot focus on other people or their “religion” because the pain is too severe and all-consuming. And if you have bad doctors who are not there when you need them the most, and no support from family and friends, you are more of an outcast than someone that has Leprosy. Getting people to understand that these “Invisible Illnesses” are real, legitimate and not just “in your head” is so vitally important. I know I can talk until I’m blue in the face to people, especially family and friends, but to no avail I get a blank stare and then get “unsolicited” advice on what I should try when in all due respect I’ve more than likely tried it more than once already in the past 25 years!! So please don’t tell me something I already know. I’ve been to a so-called “Headache Clinic” in the past and they do the same that all the other doctors do-turn you into a guinea pig and just experiment with different drugs. I was told to go to Mayo Clinic, but they don’t have the answers either. Why do you think they were partners in the launch of the current campaign :36 Million Migraine Campaign. Check out their YouTube video at this link:

http://youtu.be/23ZG0cc7TXg

And check out the official website link here:

http://www.americanmigrainefoundation.org/support-the-foundation/36-million-migraine-campaign/

I was so happy when I saw this on the National News when it was first launched with Cindy McCain, also a long-time Chronic Migraine Sufferer. This will hopefully bring more awareness, education and much needed funding to further develop Migraine Treatments. But also so that we can be treated with more respect and not less than 2nd class citizens.

http://www.nimh.nih.gov/health/publications/depression-and-chronic-pain/index.shtml

If you know of anyone suffering Chronic Migraine Disease and think they are suffering un-Diagnosed Depression, or even if it is diagnosed, PLEASE do not tell them to “snap out of it” or “it’s all in your head”. You are just adding to the burden and the ostracism they are experiencing and will cast them further into that dark abysses of despair and desperation. It could very well add fuel to tragic thoughts they are thinking. When someone is Depressed and contemplating suicide it’s not a chicken way out, and they are not thinking what it will do to those that are left behind. They are too consumed with pain, anguish, untreated suffering and unrelenting Depression. They are not thinking like a normal healthy person because they are NOT healthy and may not be for quite some time. Not until they find a cure or better medication for this Neurological Disease. Please have empathy for us who suffer sometimes in silence. And offer a helping hand, not medical advice. But best of all be a friend in time of need and do not pass judgment. In reality all too sadly those who are in deep despair internalize their deepest thoughts and keep them hidden so as not to be labeled “Psycho” or “Psychotic”” or “crazy”. It can have tragic consequences. Just recently the Chronic Migraine Community lost yet another beautiful soul to suicide. We have to work to eliminate the stigma of Chronic Migraine Disease, Chronic Pain Sufferers-all those who have an Invisible Illness are ostracized and stigmatized and scared to speak up. Some are afraid of being locked up and institutionalized. Please don’t add to this stigma anymore and please help us fight to bring theses diseases to light and get rid of Stigmas.

http://www.save.org/index.cfm?fuseaction=home.viewpage&page_id=705c8cb8-9321-f1bd-867e811b1b404c94

http://www.metanoia.org/suicide/

http://www.metanoia.org/suicide/samaritans.htm

http://www.suicidehotlines.com/

Need help? In the U.S., call 1-800-273-8255 National Suicide Prevention Lifeline

#MHAMBC Migraine & Headache Awareness Month #27: Anger Management: Goosefrabba: How do you constructively deal with the anger and resentment that arises as a result of living with Migraine/Headache Disorder?


June Migraine awareness month

Managing anger, resentment and rage at a disease like Chronic Migraine Disease is a daily but hourly challenge. As those of us that have to deal with this monster non-stop as it’s always prevalent in our lives, we have to find healthy ways to vent and release or it will eat us alive.

Blogging helps and being able to share and interact with other sufferers on different online support groups is another great outlet. We can vent, share, exchange idea’s and lift up each other and support each other. And what’s said in the support group stays there so it’s a safe sanctuary. Blogging is a little different because you open yourself up and make yourself vulnerable, but getting the word out is more important that sparing a few harsh words from some non-believers or non-supporters. Everyone gets bashed and knocked down once in a while. You just find a creative way to release this anger.

Having a close personal friend is also a good way to release the frustration, anger and fear that comes with this Chronic Disease. Even though they may not fully understand, having someone to listen to you and not judge you is so important.

I have even punched pillows on the bed, ranted to myself vocally in the house when no one is here of course-the dogs look at me like I’m off my rocker but they don’t judge me.

But trying to manage anger is a constant battle and one cannot sit back on their laurels and think it will just go away on its own, because it won’t. And if one doesn’t acknowledge the anger they are fooling themselves and those around them because you cannot help but be angry at all this disease has taken away from us, from me. It’s robbed me of my life and I want it back, darn it!

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.