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

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.

 

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.

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.

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.

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

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.

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”.

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.

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.

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

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.

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.

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??

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.

 

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.

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.

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

(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.

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.

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.

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.

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.

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

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

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

ENOUGH IS ENOUGH-STOP THE CYCLE OF EMOTIONAL PAIN AND ABUSE FOR CHONIC PAIN SUFFERERS

5-17-13

 

This past week has been trying and most difficult. After years of being treated as a doormat, having my feelings, emotions and illness stomped on and disregarded as trivial and non-important, I blew my top. I’ve turned my cheek for too many times and I admit I am partly to blame for letting this cycle continue as long as it has. If I had known years ago what I was getting myself into I would have run the opposite direction. I would have run so hard and long I’d probably still be running to this day, and avoiding all emotional entanglements PERIOD!

 

I do not and cannot understand why some humans treat others like they are worthless, useless, and insignificant, with malice and total disregard for another’s feelings, pain and distress. Even when you point it out time and time again all it does is fall on deaf ears. My problem is when I love, I do so without condition. I guess that has made me an easy target over the years to be treated the way I have allowed myself to be treated. I always give others the benefit of the doubt, especially those who are the closest to me. But oftentimes in return I do not get the same consideration or the same treatment. I’m not in by no means painting myself to be a saint or an angel, but when you are suffering in daily chronic pain where your lowest pain level on a lucky day might be a 5-6 and can spike up to a 8-9, and on a few occasions even up to a level 10-when your mind and body is under constant assault, my option of the past 3 years is to avoid conflict, confrontation and arguments as it just tosses gas on my pain and gets the fire roaring. I’ve been the one walking on eggshells as to not “rock the boat” and be considerate of the other person and not even “nag” them about one flipping darn thing, and to what avail? I might have just been making myself sicker. Who knows?

What is even more exasperating and frustrating is that I am not taken at my word when it’s physically clear as the nose on my face and the nose jutting off the other persons, how much pain I’m in and that I’m suffering. It’s not fun being shut up in a totally dark bedroom, isolated from the world, in total silence with ice packs, heat pads and medication on your bedside table with your log of when you took it, and when to take again so that I don’t lose track and accidentally double-dose. Any medium to loud noises send the pain sharper behind the eye that I have partial blindness during an attack-they call it Ice Pick Migraine but I call it The Jackhammer. And any strong smells also send me over the edge and add more to the pain. When I’m in the most extreme pain, movement or exertion will exacerbate the it even more and add to it the nausea that sometimes comes in full throttle, and then I’m worshipping the porcelain throne, or it takes spells as dry heaving. My scalp is painful to the touch and I often get ear popping to the degree sometimes that it too is painful along with ringing in the ears. Then the Fibro pain will flare up and I get the muscle spasms that will go from the back of my neck, along the top and backside of each shoulder-blade, center of back down through my lower back and hips. Sometimes I will get throbbing and tingling in the hands, feet and knees. Sometimes it’s almost like a burning sensation. This is no way for a person to live, nor does this person wants to live this way! I’d give anything to have my old life back-no pain, being able to work and not be treated with quite as much disrespect.

 

What really gets my goat is that those closest to me see my pain and suffering and disregard it. I’m told it’s either in my head, my imagination, I’m making out to be worse than it is, if I got out and did some mowing or yard work I’d feel better, if I did something with my life I’d feel better, if I just stopped taking all my meds I’d feel better, and the list just goes on for all the BS I hear. But the point is that they always blame ME for having apparently inviting these diseases into my life! Like HUH! Are you kidding me? What planet did you just land from and where is your return address and I can ship you right back! Who would want to live this way day in and day out? Certainly not me and I have been VERY active in my healthcare trying to get better. I’ve seen several GP’s, Specialists and Neurologists to no avail. All they can do is experiment on you as there is not ONE medication on the market that is designed for and made specifically for Migraine prevention. All the meds that are available to treat you are second-hand meds used as “off label” which means a medicine use for epilepsy or heart problems for example; over the course of time they found they helped with SOME people’s Migraines to lessen the severity and duration. But the stickler is that everyone has their own unique set of genetics, neurological mapping and chemistry, so what works for one person will not always work for the next person. So they experiment with a whole range of medicines to try to find the right “cocktail” that will hopefully make a person’s life with Chronic Migraine more tolerable and manageable. But they will not cure nor prevent the Migraines totally.

As of today’s date I’ve tried over 60 different medications for Migraine Preventives since 2006. I hate taking medicine more than the next person and I hate having to take a pharmacy along with me to be “prepared” for an attack that is getting out of hand. I also have a little larger version on my beside table. I hate paying for these medicines as well, and I’m totally DISGUSTED with the side effects that I DETEST this all with a passion! If the side effects get to be too much we move on to another one. Or if after 3 months that certain combo is not working its revised and another new regimen added with yet more medicines to adapt to. And so it goes, on and on over and over. Wean on new meds, wean off to start new ones. And so the medication merry-go-round goes and my hamster wheel keeps spinning.  I hate it more if not as much as the next person but I have no option. If I went medication free like I’ve been told before by a so-called loved one I’d be in much worse shape than I am now. I probably would have had a Migraine induced Stroke and lie comatose or 6’ under years ago. Maybe that is what they want. I don’t know and I can’t think any other way because of the way I’ve been treated-with no empathy and a total lack of support-emotional support. And I go out of my way to do extra things to be nice and helpful, even when I don’t feel up to it to make it “easier” on the other person and what do I get in return? Nada. Zilch. More of the same.  All I want in return is respect and love. I’m not asking for Mt Everest to be climbed , but you’d think that was what I was asking for due to the lack of compassion and support I get in return.

 

 

I was told last year that they are just “too tired” of hearing the same thing and tired of it not going away. THEY’RE TIRED!!! I’M FLIPPING EXHAUSTED AND TOTALLY WORN OUT FROM IT ALL. PITY POOR THEM-THEY HAVE IT SO TOUGH! Well guess what, like I told them then and telling them now-it will never go away. It’s here to stay. If the Migraines do eventually go away somewhere down the road it will be on its own terms, not mine. And Fibromyalgia, well there is no cure for that either so that is something else to have to learn to work around and deal with. But guess what-medication is part of the picture and it’s not going away anytime soon. I wish it could but it can’t and that is my reality. That and the constant non-stop pain. So the emotional pain and the physical pain are wearing me down and I cannot find my positive place that I use to be able to find and release the tension. My positive has turned into the negative that has surrounded me for so many years and it’s wearing me down on top of everything else. So a little over a week ago I snapped and had a breakdown of major proportions. Things have to change or I’m out of here! And I mean it. I am not going to be treated like a door mat anymore! I already have too much to deal with as it is and it’s not fair more is being added onto me, through NO fault of my own! And  if you think I’m just whining and being a big cry baby just to have my own pity party,  I’d pay you to walk in my exact shoes and live my life and bear my pain for one whole week. I dare you to. You wouldn’t be able to do it. So don’t sit there and judge me for feeling the way I do or thinking the way I do or for what I have to deal with day after day continuously. If you don’t experience this kind of pain you have no right to judge someone who does! No one can empathize but for another fellow sufferer!

 

Sad thing is that I’m not in this boat alone. My FB support groups CMA and Fibro Chicks, a lot of the members go through the same exact thing. They get no understanding, support, empathy, consideration, love, compassion or a helping hand. If we were dogs our so-called “owners” would have had us put down by now because we are being such a “burden” and such a “drag” and “not being productive” and not bringing in “our share” of the money. And the sad thing is that sometimes when we get to the bottom of the barrel, we actually start to think we’d be better off is someone would do us the favor and put us down, or a few of us have thought about doing it on our own. But then we’re told we’re “retarded” or “psycho” if we think or feel like that. Well you tell me how are we suppose to feel? When you’re always being put down and your feelings and emotions are made to feel like it’s OUR fault and we “asked” for it or we’re “not trying hard enough” and your being berated all the time. How is someone suppose to feel when they get that kind of treatment day in and day out?

I’m in PT now to try to get some help to cope with and live with the physical pain. As there is no cure for Migraines nor Fibromyalgia PT is an alternative option as I have tried just about everything else. We are trying to fix my very weak neck and shoulders, especially the LH shoulder that was injured a few years back during a fall down the steep basement steps. I got a small tear in it but it wasn’t considered big enough for surgery, so they just did cortisone shots and PT the 1^st time around. The 2^nd time I reinjured it was during work and because it was so late at night on the weekend and couldn’t report it to HR “immediately” (well everyone was in bed and it was a late Sunday night-I couldn’t tell them until that Monday morning-DUH) that was their reason to refuse to acknowledge it as a work related injury. HR had the NERVE to tell me to my face “sorry, but I have to protect the company”. She was a long time friend of the family that owns the business and the biggest back stabber that I have EVER known! I still had to undergo another round of cortisone shots and I will do no more as that last round just about did me in. I hate needles to begin with and that last one hurt like a son of a hockey puck! But I hope the PT I’m taking now will help me so I can learn to work through the FM pain. The neck treatments they are doing they hope might help a little with the Migraines, but it won’t take them away. And the FM pain could be adding to the Migraine pain. They don’t know so they can’t tell me. They are still trying to learn what makes Migraines tick and what causes FM and how to better treat that. So even the so called professionals are drawing a blank.

But telling a Chronic Migraine and FM sufferer to “snap out of it” is like telling a paraplegic to get up and walk on his own-he doesn’t need a wheelchair, he’s just faking it or using it as a crutch. And no offence to those that suffer paralysis. Just to show how retarded some people’s thinking is when it comes to Chronic Daily Migraines and FM. A lot of the fault goes to drug companies and their commercials-they add more stigma to this disease. If only it were that easy to take an Excedrin and the pain would go away. If only. I’d be eating those things like M&M’s if it would work. But no enchilada baby. Those things do NOT touch the severe pain of Chronic Migraine. Been there, done that-tried and only made me sicker to my stomach. They will help with tension headaches but not severe pain that is only a small part of the Migraine Attack.

If you are as horrified by Excedrin Migraine minimizing migraine and treating women as a superficial, please express your outrage on Excedrin’s Twitter and Facebook pages.

 

And with that I end my vent. I’m still trying to release my anger by venting as I have on my support groups-we all have. There we can talk about our symptoms, what we’ve tried, what’s worked and what hasn’t, but mostly we talk about the lack of support and being shut out and slammed down constantly. If it wasn’t for my best friend, the help of my daughter and my support groups I would have gone insane long before now. So a big THANK YOU to my support system that I have set in place. And a big THANK YOU for my online support groups that have invited me in and for once I am not judged.

 

Until next time Blessings to you for a pain-free day, and love hugs and support for my FB Support, daughter and best friend.

Julie

 

Short answers in questions I get on this WordPress Layout (this is a very short post)

5-14-13

I get a lot of questions on what theme and layout I’m using. I am using the free version and this theme is Dusk to Dawn. When you go in to set it up you can select layout options to where you can have the menu on the LH or RH side and the background color. Then you select the widgets that are available for the free version and you drag them to the RH or LH menu position you chose. You can also go into settings and customize the background picture and status picture from what you have saved in your pictures folder or downloaded from the web. This makes the site more custom and unique. You pick out your blog name 1st before it lets you go into any themes to set up, and set up your account and username along with password. When your done for the day save all your work and be sure you log out-if you stay logged in even with the browser closed it could open you up as a target for hacking if anyone can get past your firewall and virus settings.

For getting comments to show you have to go into the actual settings of your blog each day and sort through what was caught by spam and see if you want to approve them. Once you approve them you can go to that page and reply. Also you will get an email to notify you of any new comments to moderate that were not caught by Spam. I have over 3,000 messages caught by Spam and I’m debating if I want to continue to go through them all and sort them as it’s very daunting task.

You do not need any programming experience to do this free version of WordPress. It’s pretty easy to set up and customize as they guide you through it. I’ve not had much experience on this as I’ve only been doing it since late fall 2012 and I have no prior writing experience other than way, way back in high school. I would often get marked down on book reports because I made them too long-I just loved reading books and got a lot of information from them and didn’t want to leave out anything I thought was important. So I reluctantly learned to size them down to get my better grades. When I worked on the then small town ambulance service I was always stuck doing the paperwork to write up all the information that happened on each run. Everyone liked my attention to detail and I admit I got carried away and made them too long. But in life and death situations and not knowing if one call could turn into a lawsuit down the road (not saying we were bad, just that people around that time were getting sue happy) so more detail was better than less detail.

That is really all I have to share on information on the layout, the template, the customization, comments and blogging/writing experience.

Until next time Blessings for a pain free day. Julie

 

Social Media and Invisible Chronic Illnesses-The Importance of building a better support system

5-13-13

Social Media has been under scrutiny lately for giving too much exposure to all that is negative-bullying, bashing, hate, ignorance, obscenity and just plain rudeness. But it is not being given the real credit it deserves. There is a huge benefit to social media when it comes to the ICI community. Especially to those who cannot get out and connect to people as often as they’d like on a one to one basis or in group settings. Some people are so disabled by their chronic illness that they cannot get out and socialize at all and depend on their contact be in Face Book, Twitter, Google or IM (just to name a few). I really wish social media was this easily and readily available 25+ years ago when I started to struggle with Migraine Disease. What a comfort it would have brought and more knowledge in the illness by connecting with others.

 

And there is access to websites that specialize in these Chronic Illnesses where you can also interact via blogs, forums or email. There is a lot more information readily available for those learning to research on their condition, or for those who have been struggling for years with no end in sight that needs the comfort of interaction and support from others who suffer the same affliction.  I have also come across several sites that state how social interaction is vital to human health and this is just one of many to verify that concept: http://www.traumaregister.co.uk/Articles/Human_Health_Contact.htm

http://www.mayoclinic.com/health/support-groups/MH00002

http://www.worldusabilityday.org/social-networking-health-care-part-i-designing-trusted-peer-peer-support-groups-using-social-network

http://www.worldusabilityday.org/social-networking-health-care-part-ii-managing-trust-peer-peer-support-groups-social-networks

 

So no matter how you interact with people-if you can make it out to church gatherings or family gatherings, great. If not I strongly encourage you to join support groups online as it is so beneficial to interact with others and not stay cooped up in your home all alone.  And you don’t have to be computer savvy to interact with people online. You just need an internet connection, a basic computer or tablet and bookmark sites in your toolbar or favorites list. It’s really easy to set up a Face Book account as well and you can search for support groups based on your Disease and follow that group and interact on some of the ongoing conversations. Or start your own-don’t be bashful or scared of the network media. But when you can if at all possible it is still important to try to get out when you feel like you can tolerate it and interact with people in an individual setting or a group setting. Go to church, bible study, quilting group, sewing class, the library, if you live in a  town with well maintained sidewalks go for a walk on a clear day (wear your darkest sunglasses) and take a stroll and just say hello to people that walk by. With a smile on your face and a friendly hello can make someone else’s day and yours as well when you get a friendly response.

 

Today’s cell phones are also a great form of Social Media, to text people for support-to let them know your struggling and need help at that moment if not just a kind word. These newer Smartphone’s are also an important role as you can have Internet access and you can keep in touch with your Media Contacts by having Face Book, Twitter, Google and even checking out some of the blogs you subscribe to. It doesn’t matter how you interact but just as long as you do so and on a regular basis. Even to just send a message to someone you know is struggling with a simple message of “thinking of you” or “sending hugs” means a lot to someone who is struggling. It means a lot to me when I receive messages of support.

 

I have become a lot more involved in Social Media as of last fall when I was at my lowest point in the deep pit of despair and depression, and found comfort in blogging for the first time to express myself and to also find support groups via fellow bloggers and support groups on Face Book. Face Book has come a long way from being a tool for teenagers to interact, and sometimes bully and terrorize others. Sadly it’s also a place where adults too can be bullied and harassed. But for the most part I have found it to be beneficial. And to send and receive quick messages of support or updates via Twitter is a great boost when you’re having a low day.  And if you ever come into contact with someone that harasses you or tries to bully you on Face Book you can block them from your page and report them. So far I’ve not had an experience in the past few years so thankfully I can report I’ve not had to block anyone.

 

I have become a member of 2 very important support groups via Face Book: CMA-Chronic Migraine Awareness and The Coolest Fibro Chicks around town for Support and Love. I felt honored to be invited to join their closed groups and have met many wonderful and inspiring people. In the Invisible Chronic Illness (ICI) community for years we have been neglected, ignored, trivialized, harassed, belittled, mistreated, misused, abused, traumatized, stigmatized, misunderstood, under medicated, overmedicated, not medicated correctly, misdiagnosed, under diagnosed, SSD denied, SSD appealed, SSD approved, legal issues, divorce, break-ups, family dissention-the list is endless and I could really bore you if I continued. But in an actual support group you can interact with others that have the same illness as you and not be subjected to any of that abuse. You are accepted and given love, support, kindness, consideration and most of all your given validation and a place to share without judgment. We are accepted for who we are and what we go through and we uplift each other and give each other hope. And in addition to that we learn more about our disease by hearing stories about how others have achieved goals and what they did or used so you can implement those into your plan of care.

 

I have learned more this past year than I have in the whole 25 years of researching on my own. At first there was hardly any information and it was so frustrating to try to find out new medications and treatments to try. Then you try things by trial and error on your own because back then doctors were not that well educated, and frankly several of them still are not. More times than not I clearly remember taking a printout from a site to my doctor on a treatment or medication to try. That says a lot when the patient is more researched on a medication or therapy than his/her own doctor is. But it has happened and continues to happen because Migraine Disease is still a work in progress. At first they thought it was vascular and gave medications to control the constriction and dilation of the blood vessels thinking that inflammation from that was triggering the migraines. Then they thought it was chemicals and they gave medication to control the Serotonin in the brain because they believed Migraine Sufferers either had too much or not enough of it. Now they’ve come to the conclusion that Migraines are neurological because it affects the whole body and not just the head pain. Bingo a light went off in someone’s head someday to finally figure that one out. It affects the WHOLE body and the head pain is only 1 out of many symptoms and problems with a Migraine Attack. That is why when people have Chronic Daily Migraines they are so disabling it renders the person immobile and unable to work or interact with family and friends. Everything is too painful and hard to endure.

http://migraine.com/blog/recommendations-for-those-with-chronic-migraine/

http://migraine.com/blog/stigma-makes-it-harder-to-live-with-migraines/

http://migraine.com/migraine-basics/migraine-phases/

 

Over the past few years’s sufferers have started their own blogs to share their stories, their pitfalls, their success and trials along the way. I greedily ate up all the information, interacted with the Arthur of those blogs I really liked and got some really valuable information, and I bookmarked or subscribed to their page to get updates. I have so many bloggers I follow and each and every one of them is a source of invaluable information as there is no one spot on the web to get ALL your information from. I do have a couple of main websites that are my go-to for current information and updates and I really interact with all the writers who contribute with their stories and I consider their information top notch and invaluable. I consider these sites and all the authors to be my Migraine Mentors:

http://migraine.com.

http://www.puttingourheadstogether.com

http://somebodyhealme.dianalee.net

 

And these go-to sites I consider my fibromyalgia Mentors:

http://chroniclesoffibro.blogspot.com

http://fibro2010.com

http://debsfibromyalgiablog.blogspot.com

 

Of course I follow so many other sites I cannot list them all here and all the other bloggers are valuable to me as well for the information they put out there and the support and encouragement they readily provide.  I just started to blog last fall and I found it to be enjoyable to share my experiences and trials. Even if some of my experiences were not pleasant ones it was therapeutic to write it down as so many other fellow chronic sufferers can relate and interact with you and you can share stories. If you’re not a chronic Migraine of FM sufferer then you cannot understand the importance of blogging about a chronic condition that takes away your will at times. Those people have no business leaving negative feedback when they have not walked the walk. I had not encountered negative feedback on my blog until this past month, but I deal with it and consider the source-uneducated people that have not experienced the pain that we all have and still are on a day to day basis with constant medical help and no relief from pain. They are the cold-hearted and thoughtless and we encounter “those” type of people daily so we should have learned by now to let it roll off our backs like water off a ducks back and not let them get to us. Our goal is to interact and share with fellow chronic long term pain sufferers.

 

And if the person reading this right now doesn’t experience the chronic pain of daily Migraines and the whole body experience that goes with it , or you do not experience Fibromyalgia then you should not read my blogs or leave comments. You should not visit anyone else’s site either that contain the same topic matter. No matter where you go you are bound to find mean spirited people so just ignore it-respond politely to their comment and go onto the next one and forget about the ones that don’t matter. As you have to learn to do in real life-interact with positive people and stay away from the negative ones as they are the ones that always want to bring you down. But if you have not blogged before I do encourage it because it is a rewarding experience and you do get a lot of positive feedback and you get to interact with others in the community as your list of followers increase and you increase your list as well.

 

So no, Social Media does not belong to just the teenagers and young adults anymore. And you are never too old to learn. So get online and get started today if you haven’t already.

 

Until the next time Blessings for a pain free day.

Julie

 

“Happiness cannot be traveled to, owned, earned, or worn. It is the spiritual experience of living every minute with love, grace & gratitude.” – Denis Waitley

 

Disclaimer: Nothing on this site constitutes Medical Advice. I am a patient who has been educating myself through the years and I am sharing my own personal experiences about Chronic Migraines, IBS, OCD, PTSD, Panic Attacks, Depression, Fibromyalgia and CFS. Contact your own Health Care Provider for information about your own particular needs and medical advice.

 

About Me (5-4-13)

I have got a lot of questions about myself and my experience that contributes to my blogging. I am the sole writer on this blog and any links or quotes I may use from other sites I will indicate so.

So this post I will dedicate to the boring aspects of my life that have led me onto this journey of blogging about a subject I am very passionate about. Passionate because it is a major part of my life-Chronic Migraine Disease, Depression, Panic Attacks PTSD, OCD, IBS, SAD, Fibromyalgia and CFS. I write about subjects I know because I suffer from them and I have done exhaustive research to learn as much as I can to be a better educated patient and in the interim in return I’ve had to educate some of my doctors along the way as they are not as well-versed in Daily Intractable Migraines. I was just recently given the official diagnosis of FM/CFS in the winter of 2012 so I am still in the process of trying to gather information and learning materials to be better educated on that. But an educated patient is a better patient. It teaches you how to manage your disease, how to manage the doctors that care for your disease, and along the way you pick up tips, tricks and ideas from fellow sufferers and some I just picked up on my own. I am the sole writer for this blog and I admitted from the beginning in the fall of 2012 that I am a novice to this media and I am still learning-a work in progress. I try to use the spell checker that is available in this blog editor for WordPress but it’s not as efficient as the one I’m use to in Microsoft Word. So if my spelling seems off at times I try my best, but suffering from daily Migraines where the lowest pain level might reach a 6 the Migraine Fog and the Fibro Fog kick in and I’m not 100%, but I feel it’s still important to communicate and to share what I know and what I learn, as we chronic pain sufferers rely so much on media for their information and interaction with fellow sufferers alike. So bear with me as I learn to blog better and hopefully write better content.

I was born in a very small town in Missouri called Ste. Genevieve. Most of my family originates from Missouri. Due to my dads job we relocated several times and I have been to about 4 different schools when we arrived in New Buffalo Michigan in 1974 for good-our last move and I was currently in 5th grade at the time. I did have a long bout of stomach ailments for that year due to the yet again unsettling move. It seemed that as soon as we got settled into a place and made friends it was time to move yet again. So it was nice to hope that this would be the last move. We were a close-knit family and we were not raised in any particular religious preferences, but we were taught the ethics and morals. We were taught right from wrong and got a paddling when we did wrong to reinforce it so we would not do it again. But it was done in love. Every night we got hugs and told we loved each other and when we went to school, off to work or moved out of the house it was likewise. When we became adults and lived on our own and came over for visits there was always hugs and the I Love you’s said. Never take those moments for granted. So we were raised very strict. I was not allowed to date until I was 16. As was my younger sister. I’m the 3rd in line of 4 children my parents had. My mom did have a stillborn before she had me but refused to talk about it. I have 2 older brothers. The family relationship is strained for various odd reasons. It became more apparent when my mom passed in May 2003 from a sudden stroke at the age of 69. She was diagnosed in 2002 with stage 4 colón cancer that spread to the lymph nodes. She had Alzheimer’s and CHF. The stroke was an end result of the colon cancer. My dad was diagnosed with type 2 Diabetes in 2001 after almost losing his leg to cellulitis. He had high blood pressure and high cholesterol. He had a sudden hemorrhagic stroke in April 2005 just shortly after turning 77. Watching him in the nursing home struggle for breath as he held on for 3 weeks until he passed was agonizing.

I turned 50 years old late last summer of 2012. I have suffered from infrequent Migraines for over 25 years but on May of 2010 they became daily Intractable Migraines-that was how it was diagnosed at that time. My panic attacks also became unmanageable through will power alone as I was not officially being treated for them at that point. I had IBS I was suffering from since about 2000 and I learned on my own to control it through restricting or refraining totally from dairy and soy based products. At that time there was not a lot of education, or rather should I say, there were not educated doctors that would tell you how to control IBS on your own. They were just ready to get out their prescription pads and write you out a quick fix instead of digging into the problem as most doctors do. I had suffered from an arrhythmia problem called SVT around about that time as well and it was mostly controlled by medications as I was too leery to have the than older version of the Catheter Ablation they used to go into all 4 of your major arteries and insert a 5th electrode into your heart to kill part of your AV Node natural pacemaker. So I struggled with that for years trying new medications as the current ones my body adjusted to and would not longer work. I’d have spells of uncontrollable heart racing that would have to run its course until it decided to stop. When I started having problems with this the doctors at first said “your drinking too much caffeine, cut down”. So I would and problem persisted. Then I was told it was exercise induced so I cut back on my strenuous aerobic exercise and that didn’t curtail it either. Then they decided to try one of those 48hr Holster Monitors to monitor heart rate and function. Wouldn’t you know it of course it wouldn’t act up in that 48hr time frame. Then they started hinting I was a hypochondriac. I had to argue with them and reason with them I was having a real problem until they finally decided to put me on a 30 day monitor. So here I’m going about my regular routine and I didn’t change anything more and I was getting distressed because it wasn’t occurring. I was beginning to question even my sanity when the month was almost over until on day 28, remind you it was 28 days until I got a flare up. And it’s a flare up I will not soon forget. It started at work (I was working in an elementary school at that time as a Head Cook) and the monitor kicked in. I was trying to slow down my pace at work hoping it would go away like it usually did. Well, it didn’t. I was starting to get really weak and jelly legged as the adrenaline was rushing through my veins. I eventually had to call the doctor who dialed into my monitor and said I needed to go to the ER for intervention as it was not going to stop. They said I had an arrhythmia that will not correct itself. I had to call my husband to come get me as I was not able to drive and called my boss to tell her what was going on.

In the ER they hooked me up to IV”s and started pushing meds into me that I cannot remember to try to halt the arrhythmia. It was not helping and I was panicking and the nurses as well as the ER doctor attending me were getting quite worried kept trying to keep me calm. It was into about 8hrs of non-stop heart racing and I was weak, clammy and getting nauseated. I cannot remember what last med they used but they were getting ready to get the shock paddles out to shock me back into rhythm. I remember praying so hard for the medicine to work as I didn’t really want to get electrocuted into a normal sinus rhythm, or worse. Thank God the medicine worked. They kept me there for a while to make sure I was under control before they’d release me. Then I was referred to a Cardiologist that I didn’t like at all. His bedside manner was horrendous and I fired him after 2-3 visits and told my GP to refer me to a better one. I got a nice, elderly, very patient gentleman who came with a good referral by my husbands then boss. I stayed with him until he retired and my GP took over my medicine care. I would get regular stress tests and EKG’s once or twice a year. He informed me about that procedure but I was still to chicken. I didn’t want my 4 arteries compromised and all the listed complications that they listed that could happen w/the procedure. In 2008-2009 they arrhythmia started getting out of control and occurring at more frequent intervals and medication was no longer working. I had actually ran out of medication options by that chance. I was referred to an amazing Cardiologist in Memorial Hospital. He’s the head of the Cardiovascular Institute and I immediately like and trusted him. He told me I basically had no other options but the Ablation procedure. They had perfected it by then and would only go into 1 artery instead of all 4. So I agreed and had the surgery as outpatient on Sept 11 2009. Problem corrected so far-knock on wood.

All this time I was still having the migraines, chronic upper back, shoulder and neck pain. The shoulder pain didn’t help when I had taken a fall down our narrow and steep basement steps and put a slight tear in my rotor cuff. I had PT and Cortisone shots through South Bend orthopedic and it did help for a while. When I re-injured my shoulder at work they repeated the Cortisone shots but to no avail. I would not have surgery to correct it because A. it was too small of a tear and B. a close friend of ours had the surgery, was laid up for 6 months and had just as much trouble with his shoulder afterwards than he did before. So nix that option. I said “no way Jose”. I also had infrequent bouts of panic attacks but they were not uncontrollable at that time.

Up until 2010 I had several alternative treatments to try to help my Migraines and these were options I started back in the late 80’s and they were not doctor recommended or approved-at that time GP’s thought alternative treatments were bogus and not credible and these were the treatments I found online as I was constantly searching to find my own answers as I was not getting them from my doctors. But I have tried:

1. Chiropractic Manipulation
2. Acupuncture
3. Acupressure
4. Massage Therapy
5. Vitamin Supplements
6. Herbal Supplements (discovered I cannot take Feverfew due to a reaction)
7. Water Therapy-Jacuzzi
8. Binaural Beats Meditation Music
9. Guided Imagery
10. Progressive Relaxation Therapy
11. Moderate Exercise
12. Elimination Diet-I did this on my own to find food triggers and I’m aghast it was not suggested to me prior

Then when I went to Diamond Headache Clinic in Chicago in 2006 through 2007 I tried the following therapies, some were at their recommendation and others I still found on my own:

1. Biofeedback
2. Meditation
3. Relaxation/Stress Therapy
4. Specific Stretching Exercises
5. Elimination Diet-again to pinpoint more food triggers
6. Migraine Diary
7. Low Tyramine Diet

This in addition to the medications they experimented on me. After a year of traveling in horrible traffic 2 hours there and 2 hours back and spending countless hours in the waiting room to be seen behind schedule-they were always behind schedule when I was there-and the hassle of my husband and I having to take off work as I would not drive myself into Chicago traffic. Are you kidding? Me with Panic/Anxiety issues drive in bumper to bumper traffic? It didn’t bother my husband as he is from that area so he was in favor of it to begin with as he was the one that suggested it. But after a year with no real results I quit going and asked my GP to take over if he was able and at that point he said he could. So my status as a profession un-paid lab rat continued with the medication trials, and in the meantime I continued to search online for answers and to see if there were any new treatments. At that time of course there was not much in the way of Migraine treatments. My Chiropractor did write a letter to my then manager to ask to have my work station altered to be more friendly to my neck stress which she thought was adding to my Migraines. So my PC monitor was put on a stand so it would be eye level. I asked several times at my former job to have the stereo sound lowered above my desk-each speaker in the ceiling had an adjustment knob where it could be turned down. After a while those requests went unheeded. I was becoming a nuisance to them and during that time I think is where the Red Bulls-Eye was put on my head and they were going to pressure me to quit as they could not legally fire a person w/a disability, at that time the Bush administration included Chronic Migraines as a disability, little good that did at that time or today as people who suffer migraines are still discriminated against.

My then current boss would deliberate walk by my side of the cubicle doused in a whole bottle of cologne, strutting his stuff (of stuff he thought he had worth strutting which was nothing, trust me) to make my work situation more unbearable. I do have to say that boss was as intelligent as a pea pod. I called him a Baboon silently and away from work. He was not smart enough to manage a banana cart out in the parking lot, so how he got this job was retarded. He only got it because he was married to the owners daughter, who also works there. It’s a family run business and past history shows that most family run businesses end up running themselves into the ground if they don’t have the qualified management team in place. And he was fast on his way to running the company down, honestly. Why else would be have all of a sudden left that job a little over a year of my leaving? My then Team Leaders who were all part of a close-knit group of friends in high school were conspiring to put pressure on me. I was criticized all of a sudden for work I had done the 12 years prior with no complaints until now all of a sudden. All my calls were monitored. I know they are to monitor calls from everyone in the call center from time to time but mine were ALL the time. Two of them were even making a point of talking about me behind my back, over their phones which they were just one cubicle apart, but making sure I could hear it. They would call in sick for no reason and of course never be called into account. One girl often had hangovers as to why she called in and the boss even had a running joke about it, but then she never was held accountable. A lot of them did personal online shopping and checking of personal email accounts, but my computer was closely monitored for any of these actions because then it would be grounds for termination.  For a few years when I had to call into work and call off I would be the only one required to bring in a doctors excuse, but no one else was. It was out-and-out discrimination and I finally filed a complaint with the manager and then of course I was made out to be in the wrong! I knew then my days were numbered. But I didn’t know it was my health that would ultimately pay the price but at the same time come to my rescue. The pressure got so bad that a week prior to my leaving work on FMLA and then Temp Disability I was having frequent panic attacks. On my last drive home from work my panic attack was so bad I didn’t think I was going to make it home. How I did is a miracle. My last day of work was May 10 2010 when my FMLA was put into effect and I left that toxic hell hole. In hind-site that was the best thing that ever happened to me. The worse was of course my health suffered for it.

My GP at that time put me on Temp Disability, where he’d been trying to do for the past couple of years but I held off thinking, stupidly, that things would get better. Of course they didn’t. He started trying different medications on me and raised my Topomax to 300mg per day. He put me on Xanax and another anxiety drug I cannot remember the name to save my soul. But after being on it a couple of weeks I had hallucinations that scared the holy crap out of me. I’d see moving black ink blobs moving on the wall in my peripheral vision. I hear semi-trucks blaring their horns at me when none were around. I imagined things missing and blamed innocent people. Of course later when taken off those meds I discovered what I did I apologized for my behavior and at least one member of my family has yet to forgive me for. Resentment runs high in my family they tend to harbor grudges than to forgive and forget and move on. That is the same in my husband’s family as well-hold those grudges until the day you die. How productive and healthy. NOT. So not only was my workplace toxic so too my family life. I had it coming and going and I didn’t know which end was up. All I know was panic attacks were frequent and the Migraines now became daily. I was put on a waiting list to see a neurologist because my GP said he was out of options and didn’t know what more he could do. My best friend and patient advocate was with me on my last few appointments as I was not able to drive myself. The Migraines had gotten so bad they affected my vision and made me a danger on the road. Besides the doctor wisely banned me from driving. I had to wait 3 months to get into seeing this Neurologist who’s last name starts w/an A so I named him Dr. A-Holio. His bedside manner was non-existent. He was a jerk. Plain and simple. He made me feel like I was wasting his valuable time with my “trivial” complaint. He said on my 1st visit which was my referral consultation that I was not disabled and to go back to work! WHAT?? I cannot see straight to drive a straight line, horrible Migraine pain daily and everything that accompanies that! My IBS was flaring up again but I was not eating dairy or soy so I had contributed that at that time to the stress I was undergoing.

And stress is a mild word. I was sinking into a deep despair. My best friend came over to check on me and I walked her out to the car when she was leaving. I cannot remember exactly how it happened but I was leaning onto her car door for dear life to keep from falling flat on my face. I almost blacked out. She had to physically guide me into the house and made me sit down and she ran out to the pole barn to get my husband for help. I was having issues with Hypoglycemia as it turns out. It would run in the AM low 50’s and after I’d eat it would get up to 90. At that time believe it or not I was borderline “UNDERWEIGHT” I was so sick I could not stomach anything. Well the Neurologist took care of that real quick. When he tried a new med and it didn’t work he’d order a steroid to break my cycle. Now mind you I have not NEVER abused my medication. I’ve never overused it. In fact I could be blamed for sometimes not taking it at all because it scared me first off and I didn’t want to get used to it and have to go to something stronger. I do not react well to steroids. I pack on the pounds fast and I’m a witch on wheels (broomsticks are outdated). I lost track of how many times I was given steroids when he would run out of solutions. But it was too many because by the end of the year I had gained a lot of weight. And it was December 2010 when I got my 1st round of Botox for Migraines. It had just been approved for that type of therapy in Sept of that year. The insurance at first approved it, then denied it. We appealed with them 3 times, the doctor’s office appealed 2x. I appealed to the state of Indiana Insurance appeals to no avail. We, or I should say my spouse paid the then $1500.00 out of pocket expense for this treatment that did not take effect. My spouse has always resented “me” for this, for some reason, instead of the insurance company where the fault lies. But this remains a sore subject with him as he kept stating all along I couldn’t all of a sudden be that sick I need to get a job. But when I did have a job and had to call off he’d tell me I better not call off or I’d lose my job. My mind was spinning-make up your flipping mind, but no matter what I was in no shape to work. I could barely stand up w/o falling flat on my face.

In the meantime I went online and did exhaustive research on food additives and all the hidden names that these poisons go by. I’m sensitive to just about every food additive there is but what appalls me is that manufacturers are allowed to put the names of “hidden” sources for these additives but can boldly put on their label “no MSG added” when yeast protein, or glutamic Acid (the list is too long to name each one but that is just 2 of many) is listed in the ingredients and they are hidden sources of MSG!! Same goes for Soy and Gluten. See these sources I have bookmarked for more information:

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

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

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

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

And go to my Face Book Page-I have a lot of links to food additives, red dye and the likes and the hazards related:

https://www.facebook.com/Julieg350dayinthelifewithmigraines

I found out on my own all the toxins I needed to avoid that were migraine triggers. I also purchased a book (one of many) that became my food additive bible: Excitotoxins the Taste that Kills by Russell L Blaylock MD who is at that time of the books publishing a practicing board certified neurosurgeon. He points out these Excitotoxins (MSG, Soy, etc) have led to the epidemic of Alzheimer’s, Lou Gehrig’s and many other diseases including Diabetes. And while your at it get this book as well: The Whole Soy Story, the dark side of America’s favorite health food but Kaayla T. Daniel, PhD, CCN. A real eye opener. It was after this I decided I can only eat fresh prepared foods made from scratch. Nothing canned, pre-mixed, frozen, prepackaged and no fast food.

During this time my friend had to intervene because I was so depressed I didn’t want to go on anymore. And a very nice pastor came once a week to counsel me until he got to the point that he professed I needed professional help. Finally by May 2011 I asked the nice nurse who worked for Dr. A-Holio to refer me to a therapist I found online who specialized in women’s issues and pain management therapy. During several sessions and after voicing my dislike of my current Neurologist she recommended one that specializes in Migraines and she had personal experience with him through her father’s illness. So in Sept or Oct of 2011 I got into to see my new and still current Neurologist. He has been a Godsend. He also has empathy for what I’ve gone through and what I suffer because he too suffered Migraines. He vowed he will try every trick in the book and find new ones and he will not give up on me. My Professional non-paid lab rat job was still intact. I have always and will continue to be willing to try new treatments and drugs to try to find a solution that helps.

All this time during Oct 2010 I filed for permanent SSD. Of course my spouse was not supportive. He said I won’t get it, don’t bother with it, it’s a waste of time and then of course his famous line during this period “go get a job”. In May 2011 I got denied as I knew I would. They always deny you on the 1st try to try to discourage people from appealing and to get benefits. Of course my husband delighted in telling me “I told you so, now go get a job”. I didn’t give up. I can be a stubborn as he is if not more. I appealed and got a good appeals attorney that wouldn’t take a fee unless he won. He worked long and hard to gather up all my old medical records dating past 2006 to present and he said I had a good case because I had a lot of medical documentation. I repeated this info to my hubby and he was his usual gruff non-supportive self. He was non-believing, as usual. he gets that from his mother’s side, sorry to say, being very negative, non-supportive, borderline hateful, resentful, nasty, non-trusting and hording grudges. As he gets older he gets more like her. It’s pretty scary at times but the sins of the parent fall on the child and it is oh so true in his case. Why do I stick around you ask? Well, like my parents I take the vows I made serious-always have, always did and always will. I’m not a quitter. In fact when faced with a challenge sometimes I fight harder. I almost gave up the summer of 2012 when I again hit rock bottom and my best friend had to intervene again and this time hospitalization and intense personal and group therapy had to take place. Of course I was blamed for that too-it was my fault, all in my head, it’s you not me-on and on, yada, yada, yada. But anyway to finish the story of the SSD appeals I had my appeal hearing in April 2012. My Neurologist submitted a letter on my behalf per the request of my therapist. My therapist even showed up at my hearing and testified on my behalf which just blew me away. She believed in me and my case so strongly that she wanted me to win my SSD appeal. The appeals judge was impressed by this and declared me totally disabled on the bench that very day, Friday April 13th 2012. My husband’s reaction was he told me it was just “good luck”. My best friend was ecstatic for me as was my therapist and attorney. I was in a fog as I was fighting yet another migraine and had to take medication right after my testimony to the judge, when I was allowed to leave the chambers. During my hospital stay was when I was diagnosed with PTSD stemming from a past childhood memory that happened to me at the age of 11 by another family member. I had repressed it for so long it was coming back in night terrors that I found out later were causing my severe insomnia.

Since that time I have tried more alternative therapies that I have come up with my own and some I learned in the hospital and from other bloggers, as I was starting to get involved in blogging late 2012:

1. Guided Meditation
2. Meditation Music Therapy
3. Subliminal Music Therapy
4. Winter Light Therapy for SAD
5. Nintendo Wii for hand to eye coördination (recommended by PT Therapy staff at hospital)
6. Aromotherapy
7. Cupping
8. Journaling
9. Individual Therapy
10. Pets as Therapy (I already knew this from past experience)
11. Elimination Diet-yes, again. I tested negative for Gluten but could be intolerant to it and it was expanded that I cannot eat any leftovers more than 6-8 hrs old. If I was going to have something as a leftover it had to be frozen immediately and once thawed heated immediately and then eaten right away. I joke that pretty soon I will only be allowed organic home grown grass and drink distilled water. So my diet got even stricter.
12. Bible Study Group-as social interaction is vital to ones overall health and well being.

In the fall of 2012 I got into blogging after I was journaling for a while. I got turned onto it by http://www.terirobert.com/ and http://somebodyhealme.dianalee.net/. Every month this is a Migraine Carnival Blog where you create a post that fits that months theme and out of all those that are submitted (the number I’m not sure of) they select about 6 posts. Of course you must have a blog to send a post and so I got started. Prior to that I was an almost daily regular on http://migraine.com/blog/ and would learn more about Migraines, treatments, medications used and at that time I found a blog from Dr. Dawn Marcus on co-existing conditions that can occur with Migraines. It was this link in particular: http://migraine.com/blog/migraine-comorbidities-fibromyalgia/ That is when I started putting 2 and 2 together. Through the years I was developing Fibromyalgia because all the pieces started to fit together in a jigsaw puzzle. Slowly it dawned on me as I thought back all these past years as my health started to take a nosedive. The light bulb went off! Are the Migraines part of the FM. Is the non-stop neck and shoulder pain along with the back pain related to the Migraines or the FM?? I took this newly learned info to my new GP where blood tests were done to rule out Lupus, Lyme and Thyroid along w/a slew of other things and I passed my Tender Point Test-I had all but 1 that responded. But now that 1 that didn’t respond before has now been responding. Figures. This cartoon sums up my history thus far with doctors when I have to take them the information to be diagnosed:

So I take Cymbalta and Lyrica along with my other Migraine preventives and abortive. We’re still in the experimenting stage and my next appointment with my Neurologist is this May 6th. This will be to the follow-up of the 2nd Botox treatment for Migraines I had on April 16 2013. I got major eyebrow issues and eye dropping from this session that I did not get before. Still having the Migraines but was told can take a min of 3 wks to kick in and up to 4 wks to see results if it’s going to work. So on this coming Monday I will find out if we yet again change medications as it’s been 3 months on Cymbalta and Lyrica-at the same dose I started. I think it’s time to change it up again as the Lyrica doesn’t seem to be helping with the constant muscle spasms. That is a real bothersome pain and prevents me from doing a lot of lifting and a lot of the exercises I want to do.

But I will still continue to experiment with items I find online on my own or as suggestions by a great online support group I have acured over the past few months. I keep searching for pain relieving gels and liniments, pillows (just now got a buckwheat pillow and so far neck not hurting as bad but jury still out as I will not rate it yet) my bed of nails for at home Acupuncture treatments, my Breo-eye massager. I have yet to find a really dark pair of sunglasses for outdoor use. I’m trying to do Gentle Yoga but the poses you get on your toes sends my feet into major cramping and spasing. I have learned to be more organized in my Migraine Rescue Regimen. I put together a large kit on my bedside table with everything I need during a major Migraine attack. I have that featured on an earlier blog. I then decided I had better duplicate that kit in a smaller scale and carry with me in my purse because I’d borrow a med from my kit to take with and forget to return it or visa versa. It’s a bad, bad situation to be stuck out away from home and needing your abortive and pain management meds. So I have learned how to organize and streamline that to make things easier for me. Well, as easy as they can get.

Through therapy I have learned to be more calm and at peace with myself and my disease. To be angry, bitter, resentful and upset makes more stress which in turn makes muscles stiffer and does add more to the chronic pain. I lean more on Meditation and prayer to see me through the rough spots and my meditation music. I’ve made my bedroom my fortress-where I can seclude myself and be in the dark and quiet with most everything I need. I only need to leave to refresh and Ice pack or reheat a heating pad. Those Bed Buddies and those Bed Buddy Booties are great but don’t stay hot for long. I like to share new ideas and tips when I come across them and I just love getting ideas in return because I’ve said before and I will say it again-I’m always willing to try something new and see if it helps. And I owe a lot to Teri Robert, Diana Lee, Dr. Marcus, Ellen-all those on Migraine.com and the fellow sufferer’s I’ve encountered as well as to my FB support group CMA-Chronic Migraine Awareness and The Coolest Fibro Chicks around town for Support and Love. Without all those wonderful outstanding members on all these groups I’d be lost. Social Media does play a key role in Chronic Illness. I wish I had it to have tapped into it earlier in my disease but better now than never. Always try to stay positive. That is my goal and to get well. I also plan to connect with as many as I can that suffer the same as I do. If I can help ONE person it’s worthwhile.

I hope this answers everyone’s questions about me. If you have anymore please feel free to ask. You can also go to my FB page and post a question as well. I do have Twitter and I don’t know why I’m having so much trouble with it. I try to update to get current tweets and it crashes. I reload it and try again and it still crashes. I’m trying to get to the bottom of that so in the meantime if you send me tweets and I don’t respond right away that is why-technical or user error problems. But I will get to the bottom of it. Again I apologize if there are any spelling errors that irritate any of you. I am using the Word Press spell check and it is not as good as Microsoft Office but this is all I have to work with. And I cannot yet afford to add media to this site. In the late fall when I upgrade this site I will be able to do so then, but I cannot do so now and I hope you understand why.

Until next time praying you all have a Blessed and pain-free day. Julie

People in the ICI Community need to be more supportive and less judgmental of fellow sufferers

I was dismayed, sad and shocked by recent posts in the Invisible Chronic Illness Community bashing, criticizing and cussing out another in the community that found a way out for “himself” and he posted and shared his experience because he was finally able to break free from the vicious pain cycle and find happiness. I thought in this community and in the midst of all this blogging we were to share our experiences w/o fear of repercussion from another in the same category. I thought we were to be supportive of one another and encourage each other on, and then rejoice if someone has a breakthrough and feels better. I’m shocked at the lack of support I found. If a person was diagnosed with cancer and then was found to be in remission and for the time being considered “cured” that person would be ecstatic and that person’s supporters and other cancer victims would cheer that person on now that they don’t have to fear cancer anymore. Cancer is an Invisible Illness and often misunderstood and stigmatized as well. So when a fellow Migraine sufferer finds a way out of the dark tunnel we bash him? That would be like telling the cancer survivor “you don’t deserve to be better and happy-suffer with the rest of us and be ill!” Now I’m sure if you all sit back and think about it you would agree-we would not wish for a cancer sufferer to regain their cancer, so why would we want a Migraine sufferer to continue to suffer?

I have blogged about my 25 year journey with Migraines and how in May 2010 they progressed to daily intractable Migraines for no apparent reason, and I was not misusing my medications either. My panic attacks also got out of control as well as the Deep Depression I was in over the years long battle with what I then called the Migraine Curse and then everything else piled up on top. I felt like I was drowning in a deep dark abyss of pain and suffering. I had heart surgery Sept 11, 2009 for my long battle with an arrhythmia problem called SVT and by May 2010 I felt my whole world was caving in because one thing after another seemed to go wrong. I was battling Hypoglycemia and non-stop pain. I don’t have to tell all you Migraine sufferers out there how debilitating a Migraine is. You know all too well. But to recount my spells I can have them for 2-3 days at a time, get barely a break for a day and here comes another cycle. I have bad Aura’s prior and during an attack. I’ll  get a partial blind spot in 1 eye and very dizzy and easily confused and lose my balance often. I was already clumsy to begin with but the balance issue just gets worse with a Migraine attack. I get those lovey Icepick Migraines which I renamed Jackhammer Migraines-the stabbing pain behind and in the eyeball was so intense I’d think it would fall out if I bent over, or actually the pressure increased when I did bend over. I think whoever penned the name Icepick never had one in his/her life or they would not have labeled it with such a lame term. That temple on the same side hurts like heck and the skin will be sore to the touch all over my scalp. In fact after I get one of these Migraines I cannot not wash my hair until the pain subsides and even then it’s often too sore to wash-my scalp has always remained tender and sore to the touch and I’d lose more hair than I would have normally pre-2010. If I come into contact with anything artificially scented-someone wearing cologne, scented lotion, hairspray, cleaning supplies, candles, soaps-it will set me off. I am so hypersensitive to smells. Even the smell of Bacon is evil and I cannot tolerate it, but still my husband and daughter love for me to cook bacon, and I suffer afterwards.

I get very nauseous as a result and sometimes if I didn’t hurl into the porcelain throne I’d dry heave, which is worse than the actually vomiting. And I will often get chills or break out in a clammy sweat-it all depends I guess on how my internal thermometer wants to operate on any given day. If I get chills they seem to be deep to the bone and I put on my electric blanket for a couple of hours before I will stop shivering, yet my skin would feel normal if my husband or daughter would touch my forehead. Explain that phenomenon if you can. I cannot tolerate bright light or those artificial fluorescent lights. My husband will come home from work and complain the house is always dark because I live like a vampire-the curtains and shades will be closed and I will not turn a table lamp on unless I absolutely have to and I make sure it’s not too close to me. I have yet to find a dark enough pair of sunglasses to block the sun, that is how much the bright light hurts my eyes and adds to the pain. I cannot watch TV for long or read a good book, oh how I miss reading my books, because of the constant pain, the lack of visual focus and the side effects of the migraines is that I cannot comprehend what I’m reading most of the time because the confusion sets in. I have a ton of books and I love to re-read them but I have a lot of new ones I cannot even crack open and start and it’s like they are just begging me to pick them up, and I so miss my reading. I cannot stay on the computer long because the screen glare (even with the additional anti-glare applied to it) makes my eyes water, burn and adds still to the pain. How I’d love to go to the Movies when a new one comes out-but the noise and the moving screen would be too much. At home I can walk away every 5-10 minutes to recover and come back.

I turned my bedroom into a dark cavern I call my Fortress. Window darkening blinds, cark foam backed curtains, dark walls, dark floor, dark sheets-everything dark. My husband is not too happy it’s so dark but that one room is my Fortress-to slink away, curl up in bed with my ice packs and heating pads, turn on the fan and ride out the storm. I have my Migraine Survivalist Kit on my bedside table. A kit I put together over the past couple of years based on what I found were my essential needs during an attack to make it easier on me, and some various tips from other bloggers. So I only have to get out of bed to go to the bathroom or get more ice packs-everything else is within arms reach. I have an emergency kit in my purse for when I got out with my rescue meds and Migraine essentials. It makes my purse weight a ton and it’s a burden and my husband always loves to rag me about my “suitcase” but hey, I’m prepared.

And the noise. When I’m home alone during the day the TV is off! But when my husband and daughter come home the 1st thing they do is turn it on and ramp up the volume like they are deaf. OUCH! When I can get control of the remote (yep, good luck on that one) I will turn it down. Way down. When I use my iPod for meditation with my soothing meditation and Binaural Beats tones to relax and meditate during the pain I have it turned as low as possible where I can barely hear it. But then when my husband drags me out to his “playhouse” which is the Pole Barn to help him with his car project the noise is horrific and I must wear those noise reduction ear muffs. But the sound still comes through them. In the house when someone comes to the door the dogs bark like crazy and the one will howl like he’s on the hunt (he has Beagle in him) so imagine hearing that when your head is in excruciating pain along with everything else. Or when a major project is going on in the house and the spouse rips out the saws, electric drills, mini-compact air compressor, nail gun-HORENDOUS!! And then he likes to think I’m part male with as much testosterone as he and haul a monstrous humongous frig through the front door that barely fit through the doorway! Just to name one of many, many times I’ve been called upon during my Migraine pain the tasks to help him perform! But I’m not allowed to say “no” because he has no one else that can help him and then he rampages and goes on a tirade. Best to tough it out and suffer more later.

So I know all too well what goes into having Migraine Disease. And I was in such a dark hole of despair, anger and resentment I seriously considered ending it all. Yep, I actually considered suicide. Not once, or twice but a few times. My best friend intervened twice to stop me. The other times I  just chickened out and could not go through with it. But I was in the planning stages the other two times and I was so close to going through with it and I think that is why I told my friend so she could intervene and stop me. I was in such a dark hole of despair and thought I wanted to die to get away from it all, but deep down inside a voice told me NO. So that is why I believe I told my friend, so she could stop me.

That was a turning point for me. I realized that I had become so unhappy, bitter, angry, resentful, sad, lonely, lost, isolated and I blamed everyone including myself-even though I was doing everything right by avoiding all my triggers, trying to eat right, exercise and follow my doctors instructions and to not over-medicate to get caught in the rebound cycle. I was in such despair and mad at the world. I’d hear people make friendly suggestions to me on what they read or saw and I would blow up-I was so angry because I had done so much research all these years to learn what I could and even take info I found to the doctors to try out. I would think they were criticizing me for not doing enough when I was already doing more than my fare share. For someone to give me advice on a book to read because they just saw it online, but I had the book already a few years prior to their suggestion and I’m like “hey, I know this stuff already, so tell me something I haven’t tried cause I’m already doing it all”. I’ve done holistic, natural remedies, diet elimination and raw foods along with vitamins, supplements, massage, biofeedback, chiropractic, cupping, meditation, acupuncture, acupressure-the list goes on and on what I’ve tried to get these blasted things under control. And that’s not counting the traditional medical approaches. I’ve been to Diamond Headache Clinic in Chicago Illinois. All they did was experiment on me with drugs like the other doctors out here were doing. After a year of driving into Chicago with no improvement I quit going there. The drive was too much for me and would trigger a bigger migraine because my schedule would be so disrupted. I tried Botox in Dec 2010 a month or 2 after it was approved for Migraines. The insurance denied it because they were trying to argue it was NOT approved, then I had to have the doctor submit detailed documentation it was medically necessary due to the severity and duration of the migraines and to state even at that time I’ve tried everything else to no avail. The insurance company still found a way to deny it stating it was not covered under “preventive protocol” in their handbook and guidelines. So my husband had to fork out the THEN #1,500.00 out of pocket for the full cost and paid it monthly. I will never hear the end of that from him! I had written pre-certification from the insurance it would be covered, then they don’t and deny it. I fought the insurance and appealed, they still denied after all the documentation was submitted and I even went through the Board of Indiana Insurance appeals and they sided with the insurance company, of course.

So that added to the stresses mounting up on my marriage. I was unemployed and getting temp disability at that time. My husband puts a lot of importance on money and when he had to fork over that amount it just put a bigger strain. He could not understand for one how bad the migraines were even though he saw me in bed with ice packs and in a pitch black room, and all the doctors I’d been seeing and the new medications to try. Even telling him how much pain I was in with all the other effects of the Migraine, and still he doesn’t get it. Then I’m not working which is a big no-no with him. He kept railing on me to get another job so I can contribute. It was a sin to him that I was not bringing in a regular paycheck. When I applied for SSD he was against it saying I’d never get it and basically implying I’m not that sick. Yes I was denied the 1st time because they do that to discourage people. They don’t want to pay out anything unless they have to. So I was told “I told you so” too many times to remember. I appealed my denial and got an attorney that deals with SSD appeals. He would not take payment unless I won. He worked hard on my case and gathered my long extensive list of medical records from all my doctors over the last several years. He said I had a good case. My spouse was still not supportive and still ragging on me to get a job and give up on the appeals. When I had my appeal hearing my best friend drove me because again I was not safe to drive myself. At the hearing my therapist showed up to testify on my behalf, she felt so strongly for me. I did win my appeal and got my back pay and my monthly benefit. All my hubby said was that I was “lucky”. So that is the support I’m dealing with while I’m going through this ordeal-no support from the spouse I have to get it from other sources.

I was hospitalized in August of 2012 for a week. That was my turning point. With intense therapy I realized I could not let my negative feelings rule my life as they were making me more miserable and contributing to the pain, stress and suffering I was enduring. I realized through counseling that how you perceive things in your mind and how you process them effects the body as well. So if I’m all stressed out and negative it adds additional stress to the body and therefore increases the pain because that is all I’m focusing on. I was so intent on focusing on the pain and how miserable I was that I blocked everything else out. No wonder people would not listen to me anymore. Who wants to listen to someone complain all the time and being negative about this and that! I couldn’t blame them when I stepped back and took a good long look at everything. I realized attitude is part of the problem, but not all of it. I started to journal and then blog and interact more with people online who are going through the same thing. I began to realize if I started being more positive about things in my life and learn to accept the fact there is no cure for Migraine Disease and let go of my anger, hate and resentment over it, and just learn to accept it and that all I can do is find ways of managing it better. If I would meditate more during the painful cycles it would distract my mind from the intense pain and I would not feel it as much as I would if I was tuned into that only and all the negativity surrounding it. Yes, Migraine Disease sucks. It’s horrible. It’s terrible. It’s a curse I would not put on another person. The side effects from the countless medications suck. The cost of the medications suck. Going to the doctor all the times sucks. But you know what, if you just learn to go with the flow and accept it you can go with the flow a little easier and be a better person to be around. So I focus on that-being a better person and going with the flow because I cannot change what I cannot change. If that sentence makes sense to you. Why vent and rant and get all tied up in a knot over something you cannot change or cure? At the end of 2012 I was diagnosed with FM and CFS. I was a little deflated at first and almost got into that mind-set again of “oh great, another curse”. But with the support of a network I set up of people who provide positive influence and positive feedback I got back on track again.

Now I’m in NO WAY preaching to people that you need to be more positive to “cure” Migraines. Heck no!!! I know there is no cure for one thing, and what works for me may not work for everyone else! I know that. I get that. I am only blogging about what works for ME and I am in NO WAY telling everyone out there that suffers with ICI MUST follow my thought process and my routine. NO. You can disagree with how I handle migraines or my thought process to make it through a bad cycle all you want to. It will not change the new way I’ve come to handle them. I found that for ME being positive and focusing on what I can do instead of what I can’t do is a big help. And I did use my positive reinforcements this past weekend when I had a horrible 3-day Migraine attack when I had to use my Imitrex Injections. I tapped into my friend “hotline” I call it for a moral boost and it helped. It didn’t take away my pain, but it helped me to battle through it with no anger, bitterness, resentment, malice or being mean. I stayed positive which is a day to day, hour by hour process. I have to be constantly conscious of it and work on it for it to work for me. And I state “work for me”, not a “work for everyone else”. I do not profess to be a doctor and have the answers for everyone but I can go by my own experience and what works for me. Period.

So if someone writes a post about how they found a way that works for them and that they found happiness in the middle the deep dark abyss, I am happy for them. I will not resort to being angry, bitter, resentful nor criticize them or curse them. If someone finds some kind of relief from this horrible pain I say “all the more power to you” and that will be it. And if I see a post that I don’t agree on I just pass it by and I don’t let it phase me because you know what? It’s not worth the extra energy your putting into bashing that person when you could be putting the energy into yourself. Now if I do come across a site that states “guaranteed cure” I will speak up because I know enough that a statement like that is a bunch of bunk! BS if you prefer. So I’m happy someone could find a way to be happy in spite of suffering from a horrible disease like Migraine. Yes, I know it’s a neurological disorder that has genetic factors to it. I had 2 parents that suffered from it years ago when there were no medications for Migraines. My sister suffers from it and has told of many terrible, horrific ER stories. Which in fact I’d rather roll around in my bathroom floor in extreme pain like this last weekend-a pain level 8-9 and deal with it on my own than go to an ER, thank you very much!

I feel sorry for those who are bitter and angry over someone that has found a way out. Someone who can be happy in spite of it all. I don’t envy the contempt this person is facing and which I might face as well after this post. But life goes on and you get out of it what you put into it. And for me I will put in positive attitude and deal with this my own way. I do not force anyone to read my blogs or agree with what I’m saying. But we can agree to disagree in an agreeable fashion. There is no need to curse or be vile over it. That is an attitude I cannot accept. That is nothing short of Cyber-Bullying. Have we stooped that low?

For that I will sign off wishing you all better health, peace, harmony and good will. Try to have as pain free a day as possible and I wish I could make it all go away for everyone, but that is not in my power. Instead sending you all good wishes to be Happy, Healthy and Be Well.

Julie

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.

So

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

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 1^st 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 1^st 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……….

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

(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)

(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)

(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)

(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)

(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)

(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)

(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