#MHAMBC Migraine & Headache Awareness Month #20: Star Trek: Generations: What role do Migraine/Headache Disorders play in your family history? Do others live with it? Does this make a difference in how you talk about it?


June Migraine awareness month

Star Trek: Generations: What role do Migraine/Headache Disorders play
in your family history? Do others live with it? Does this make a difference in
how you talk about it?

I have inherited the genetic makeup from my parents for Migraine Disease. My dad had them when he was young, before his teen years, but in that age they called them “Sick Headaches“. He would get the horrible pain in the head and sick at his stomach. He said after he would throw up he’d start to feel better and slowly it would fade away and be gone the next day. He said he stopped having them when he became a teen. My mother developed Migraines during her Pre-Menopause and during Menopause stage of life. She started early in her mid to late 40’s. I do remember going over to visit (I had moved out then as I was married in ’82) and she’d be in a dark room we called The Den with wet wash cloths, ice pack and at that time the only thing they prescribed for her head pain was Darvocet. It didn’t work very well for her and sometimes she would get very nauseated and they didn’t give her anything for it. My sister was still home at the time as she is 9 years younger that I am so she witnessed the brunt of it. But it would take my mom a couple of days to fully recover. They didn’t have any information back then on Migraine Preventive, Triggers or Abortive Medication. I started doing some research on my own at that time and they were slowly coming out with possible food triggers and at that time they were only reporting Nitrates and starting to uncover MSG. We would have heated debates over what I told her she could not eat and she would refuse to give up those foods stating “I’ve eaten them all my life and never gave me trouble so why now”? I remember being so frustrated and after a few head-to-head disagreements I gave up. There was no getting through to her. But I did not know I was gathering info that I would later have to use at that time.

My sister started getting Migraines in her teenage years. She was just like mom at the time-would not give up her favorite foods. My family stubbornness runs deep and hard to break sometimes. She still gets them from time to time and I’ve heard her horror stories of trips to the ER for intervention and I vowed I would NEVER go to an ER and be treated that way! I started getting Episodic Migraines in the mid to late 80’s, exact year I’m unsure. It was a couple of years I believe after the birth of my only child in ’85. My 1st one I remember I felt like I was dying, rolling around on the bathroom floor near the toilet. Pure agony and the only thing I had was Excederin. Didn’t touch the pain! Tried Tylenol. Nope, didn’t work either. My parents having experienced them 1st hand and knew the agony I was in-well my dad hopped into the car and drove me over some of my mom’s Darvocet. I know it’s a no-no to share medication but I was so desperate.

A little while after that is when Imitrex 1st came out. Of course my PCP gave me an RX for it and of course as it was a new drug the insurance would not cover it as I found out when I filled it so I had to pay full price for 9 pills. I remember vividly at K-Mart Pharmacy in Niles squeaking out loud to the pharmacy tech ringing up my bill “what, $175.00 are you flipping nuts”???? I was over a barrel and had no choice and paid for it. I think at that point I was debating which is worse-the money or the head pain? I was very stingy with those pills and took them as a last resort, which was not a good idea. But they were just too expensive and could only get them filled once a month. Yep even back then the insurance had limits on what you can fill monthly. In 2010 I became Chronic having Migraines daily at what is now considered my “norm” of a level 5 and I take my abortive med when the pain escalates at least 2 times a week to a 8-9 and sometimes 10. When it’s gotten so bad and nothing will touch it I have gone to the spare bedroom or bathroom and laid on the floor rolling and crying in pain as I still refuse to go to the ER. Just earlier this month for the 1st time I called my Neuro after hours emergency phone number on a Thursday. Never got help after many , many calls until that following Monday when they called me to admit me into the infusion center. The migraine was still raging and I went, but I’m shopping for a new doctor. What kind of doctor would leave a message with his phone service that he will not accept calls on a Friday for Migraine Emergencies when he specializes in Migraines? Go figure.

Things have come a long way since then but the cost of the medications are higher, there is still a really bad Stigma about Migraine as a legitimate disease. Some doctors are still not educated in Headache and Migraine Disorders. Patients still have to research online for alternative treatments, medication options and medical procedures to take to their doctor. More information is available online as they are slowly learning more about this horrible disease. But we need to get the word out about how debilitating this disease is and how many people it affects and get the Stigma taken away from it. It’s not “all in our heads” and it won’t just go away with a OTC med in a majority of cases. It’s a neurological disease that affects the WHOLE body.

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

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

#MHAMBC Migraine & Headache Awareness month #2: X-Men: Migraine and Headache Disorders Super Heroes: Who in your life goes above and beyond the call of duty and how


June Migraine awareness month

Migraine Blog Challenge Day# 2 (June 2, 2013)

X-Men: Migraine and Headache Disorders Super Heroes: Who in your life goes above and beyond the call of duty and how?

I know I have vented about the bad times with my spouse, my significant other, about his oftentimes lack of support and consideration. When we got married in 1982 none of us knew that Migraine Disease would become a major force to be reckoned with in our lives together. At first when it was sporadic it was a minor nuisance. Since early 2010 when it became daily chronic Migraines after a host of other things, it was like the Domino effect and things came tumbling down. 

We did have our ups and downs before then but this became a real challenge. At first he tried to be supportive but he gets very easily frustrated and in his family they never dealt with chronic illness very well, so he wasn’t sure really what to do and how to do it. I became frustrated as well and we would both take it out on each other. He became angry when there appeared to be no end in sight and he took it out on me. As a result I retreated and became hurt, angry and resentful. Resentful for his lack of emotional support and angry for the way his mother raised her children-not knowing how to give loving and emotional support. 

I did make excuses saying it was how he was raised and how he can change if he wanted to, but he is very stubborn. Change doesn’t come easy for him or his family. But very slowly this past month I have seen a change. He’s slowly showing and voicing concern and finally recognizing I have been and am currently doing all that I can to try to get better and how it’s all been an uphill struggle. He sees how depressed and frustrated I am and see’s the toll it’s taken on me emotionally as well as physically. He has been doing little things here and there to try to alleviate my pain by doing dishes a couple of times and taking care of the dogs when I can’t get up in time to let them in and out. He’s picked up things for me at the store without my asking and offers to pick up my RX’s for me on his way home from work. 

He has even forced himself to eat leftovers the next day without complaining if I’m too sick to cook. Now he doesn’t like to do it often so it’s a work in progress, but we’re making baby steps. But he is starting to show compassion, kindness and emotional support-when I need it the most. Again we’re doing this in baby steps but in the right direction. My daughter has started pitching in and making supper once in a while when she gets home from work and feels up to it, or will do some housework for me-all without being asked. She will check on me often when she’s home and bring me water or refill my ice cap. I don’t know what I’d do without her. 

My other super hero isn’t a man but it’s my best friend of 30 years. My constant unyielding and non-judgmental friend, who’s never left my side, always has been there for support, love, encouragement and a very broad shoulder when it’s been needed. She’s taken me to doctor’s appointments when I can’t make it on my own and has picked up grocery items during the week if I’ve run out of things. I could not have made it without her unconditional love and support.

I am blessed to have 3 Super Heroes in my life.

 

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

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

Gardening is theraputic for the mind and soul-Getting your mind off your Disease by finding a hobby.


I discovered the love of gardening last year when I was at my lowest point in life. Depressed and in despair over the constant migraines, body aches and pains and you name it-it was bogging me down. I had yet to fully learn the coping skills I have in place now, so looking back at that time last year, this garden actually saved me! It made me feel productive even when I’d forget things constantly, I’d never forget each morning to go out and water my newly planted babies and take care of my established plants from prior planting a couple of years ago by my best friend Heidi. She planted Mum’s for me and the Daffodils and Crocus. Those plants are all lined up between the sidewalk and side of the garage. I think that’s why my Mum’s have come back each season for about 5 years now. But I had a purpose. I wanted to make the front more inviting as I had let it go. It basically became a mulch garden a few years ago by my husband and I hadn’t touched it since. After my mom passed in May 2003 I bought a concrete Angel statue and it was randomly placed in this area not knowing at that time what to do with it. When my dad passed in April 2005 I went to the same place I got the Angel and I got 2 large concrete stepping-stones. I had them willy nilly in the garden with no real placement.

Front Garden before mulchFront Garden in process024

(Pic#1 this is the front w/old mulch)

(Pic#2 Mulching in process)

(Pic#3 My garden stepping stones)

So in the spring of 2012 I decided I was going to do a Memorial Garden to honor the memory of my loving parents that I miss dearly. Their ashes are buried in the very southern tip of Missouri and to drive from this location in Michigan to there takes about 11 hours one way. And that was with my husband doing his heavy petal to the metal. We went down there on Memorial Day Weekend 2005 to bury their ashes in the family plot. That was their request and I was the executor of the Estate and I followed all of their verbal instructions they drilled into me for years to the letter. My Aunt that lives down there had already purchased their headstone at my dads request and he paid her. I thought it was morbid at the time him showing me the picture of the headstone in place with mom’s info filled out. It made me feel sad and empty. So when dad passed my Aunt said she’d fill out dad’s part instead of sending a card or flowers. It’s a very nice headstone, if you can call them nice. It’s black granite.

Front GardenProgress in front garden036

(Pic#1 The garden w/new mulch and new plants)

(Pic#2 Another view looking from the South)

(Pic#3 My Mums in early Sept after pruning all summer)

Anyway to move out of this morbid train of thought. It was just to give a little background to my garden planning. My mom loved the color pink and my dad loved red. I am partial to red, but I love blue and my best friend and sister like purple. My friend always loves my lavender I planted many years ago. It needs some major tending to now that I’ve learned after the fact you need to prune it, because now it has some woody growth to it. It needs a major pruning and I pray I can do it correctly w/o hurting it. I have always loved Lillie’s, especially the Asiatic ones. I like the Day Lillie’s too with all the different colors they have. So along the garage side I added 4 different sizes and colors of Day Lillie’s behind the Mums and near my Honeysuckle. That is where I put my Angel as well. I needed something there that would bloom after the Daffodils and Crocus but before the Mum’s. I’m still pondering if I should add anything more there….

Memorial Garden 019037

(Pic#1 My Memorial to Mom and Dad-Completed)

(Pic#2 My Angel Illuminated at night)

(Pic#3 Late August things really started to grow, Yeah~!)

On the other side of the garden, the North side, I planted 20 mixed Asiatic Lillie’s. To my horror all summer I was battling a mole varmit! He came and ate all but 3 bulbs by August, but by the end of the month those 3 were gone! I did all I could think of-traps, grape bubble gum in his tunnels and I was also told to place moth balls around the base of the bulbs. To no avail he still gobbled them up. I was ready to take my gun out there and shoot him. Sometimes I’d be out there and he’d zip from my lavender, across the front edge of the garden to under my Mum’s. I’d race to try to stomp him but being as uncoördinated as I am I missed and almost fell all the time! But to continue on with my saga: I planted 4″ potted Little Princess Spiraea, in the corner on the other side of the picture window I planted 2 Black Beauty Elderberry (I know I need to keep it pruned so it won’t outgrow that space, but it looked so cool) and in the front of the bird bath I planted Veronica Georgia Blue (sad to say of the 6 I planted only 3 have survived).

Yellow daylillie Christmas Red Daylillie

(These are the Day Lillie’s that are on the garage side wall-survived the mole invasion)

It had been a few years since mulch was put down and it was worn down and worn out. I was crazy to think that by buying 6 bags of beautiful red mulch I’d have enough! Hah, it barely filled in the section by the North wall! By the time it was all said and done, the whole area re-mulched, I was 20 bags into it!! Quite expensive but there was no truck available to get any in bulk and to get the color I wanted-Red. Vivid Red.  I then on a whim found some fantastic Bronze finished solar lights I put alongside the sidewalk to illuminate the way to the front door. They were on sale and a set of 8 which I considered quite a steal (until I realized why when getting the garden ready for winter-the finish was coming off and they started to rust 😦 )

Just planted Little Princess Spiraea

(The top picture is my baby Spiraea at just a few weeks and on the bottom it has doubled in size in just 1 month)

Around the Angel it looked incomplete and I was figuring out what to do with it. I came across the idea to get 2 solar lighted memorial markers to put on each side and a small bag of white marble chips. I got through a craft store a small bag of white stones to put in the Angel’s bowl she was holding. Then I got to thinking after I saw an advertisement banner searching online, I got 2 personalized stones that represent my mom then my dad. Then it seemed to come together for me.

garden visitor

(one of the other many visitors that came to my garden-we have many rabbits and as a result many Coyote in the middle of the night)

I made a point of it each morning to go out and water my new plants, I called them babies actually, and the older plants as well. I’d weed and put down more Preen. Preen became my best friend as well as Miracle Grow. But while I was out there every day, even when it was hot but the sun didn’t hit that side of the house yet as it faces West, I’d forget my worries and concentrate of making my plants thrive and grown. Plus fighting that varmit! It turned out to be a hot and dry summer so I had to tend to my garden every day. And since it was in memory of my parents that was extra motivation. I plan on adding more to the garden this year, a vibrant red plant (Perennial is a must) to surround the Spiraea and fill in the blank spaces. I’d like to do Lillie’s again now that I got a great hint on using chicken wire to cage them in when I bury them. Wish I had known of that last year. Oh well I got those bulbs on sale so it’s not like I lost a lot of money for them to turn into mole food. It’s just the idea of it.

This part of gardening I detest

(This is one garden visitor that freaks the crap out of me-the other one was a small garter snake slithering under the lavender-I stayed away from that for the rest of the season-no weeding around the lavender!)

So along with gardening that I discovered took my thoughts off my problems, I also did journaling and then blogging. But my best friend was right. And so is my new blogger friend Steven. Gardening is very therapeutic, when you don’t have rodents and creepy crawly things to scare the crap out of you, but it still gets your mind off your problems, you’re doing something productive, you’re getting out of the house, your improving your atmosphere as well as the appearance of your yard, and you get to sit back and watch the fruit of your labor thrive and grow. Doing this and being able to interact with some pretty doggone amazing people online through blogging, Face Book and Twitter, all of these avenues are great coping mechanisms. I would highly recommend a flower or vegetable garden. I’m trying an indoor herbal garden with Rosemary. That is slow going but Steven said it would be so I will be patient. I will get it a buddy so it’s not alone in that pot. And I will do another container planting on my back deck. I can’t do any landscaping because that is where the dogs go and they eat and tear up stuff. But I am going to involve my mind more by planning what to add and where to put it, therefore distracting myself from my burdens.

I will post some updates to my project in the future. I hope all of you have a hobby you enjoy that you can find joy and happiness from. If you don’t have one by now please find one and immerse yourself into it fully and reap the rewards.

Until next time wishing you all a Blessed and Pain free day.

Unexpected Lessons Learned and Old Ones Renewed


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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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


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

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

My pet peeves based on my personal experience:

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

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

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

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

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

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

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

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

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

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

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

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

Lion with Black Eye

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

Oh, and by the way-Happy New Year.

Stay Happy, Healthy, Peaceful and Safe
Sincerely
Julie

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

 

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

When Times Get Tough Your Mind Can be Friend or Foe


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

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

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

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

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

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

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

Always count your blessings.

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