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


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Happy New Year

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

Migraine-eye pick pain

 

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

pulling-hair-out

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

meditate

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

Migraine zombie

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

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

http://youtu.be/oT8awm90zl8

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

#MHAMBC Migraine & Headache Awareness Month #17: What feels like Mission Impossible in your life given the constraints of Migraine and Headache Disorders?


June Migraine awareness month

I really regret the fact that I am not able to work full time, or even part time. I feel like the weakest link unable to contribute financially like I use to. As it is now can just barely make it month to month even receiving SSD monthly benefits, which is a far cry from what I use to earn. Trying to learn how to adjust the last couple of years has been hard. And extra’s have come to a standstill while medical bills take the forefront and that too makes me feel like a burden. The costs of medications, even co-pays adds up each month and also takes a toll.

Taking time to go to the doctor and if I’m not up to driving, I have to have someone else take me so that I’m not a hazard on the road, and that too makes me feel like a burden. Not being able to do the extra things I use to do, like grocery shopping and running errands seems like it was someone else’s life I was living, as it’s a far cry to what I live like now. I use to like being out and about with people, but now crowds give me a panic attack. Also if I drive myself and get astray from my original path, like a detour due to road construction, can set me into a panic attack.

I feel very immobilized and more of a burden than an asset. I try to not let it get me down and for the most part I can control it. Other times when the pain is at it’s worse, its hard to keep those emotions under control, and at times like that I have a meltdown. But I deal with it the best I can and ask for help from my support system when it gets to be too much. That is all anyone can do when dealing with a Chronic Pain Disorder like Chronic Migraine Disease.

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.

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


crying and anguished face

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!

playing in water

 

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?

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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.

lonely

 

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.

Slide30

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.

 depression

 

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!

 

purple angel

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?

blue face of depression

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 1st time around. The 2nd 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.

operation

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.

ExcedrinMigraineFAIL

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

 

People Test

About Me (5-4-13)


Julie Head Shot (2)

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:

Doctors

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

Encouraging-Quotes

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.

Migraine survivalist kit and tactics


My Migraine MUST HAVE Survivalist Kit  

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

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

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

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

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

5. Warm fuzzy socks 

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

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

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

9. Ziploc bag w/straws for 7-up

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

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

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

13. *Anti-Nausea Meds (Zofran)

14. *Sea Bands for nausea

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

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

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

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

19. **Box of Kleenex

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

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

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

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

24. Extra pillows

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

26. *Small package of hand wipes 

27. Small bedside lamp w/dimmer setting or switch

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

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

30. A lined waste can (Just in case)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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