The Dark Side


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2-17-14

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

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

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

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

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

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

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

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Values

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

DISCLAIMER:

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

#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.

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


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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.

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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.

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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.

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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!

 

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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?

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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.

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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

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


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

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

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

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

Until next time Blessings for a pain free day. Julie

 

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

I just don’t get it! (update 5-4-13)


Homer Confused

The more I think of it the more confused I get. Why is Migraine Disease to Stigmatized and why is it not recognized as a the Chronic Disabling Disease that it is? Those of us that suffer this horrible disease know all too well how it affects the mind and the body and how it attacks every fiber of our being. Living with migraine is a challenge, to say the least, and to get others to recognize it as more than “just a headache” is even more of a challenge to say the least. Migraines are rated in the top 20 most disabling diseases in the world and it’s been described as more crippling than having a broken bone. But yet “healthy” people still ignore the statistics and demoralize the illness as being trivial and all in one’s head. Well, it starts in the head but it does affect every part of a person’s body. The pain and suffering people experience with this disease can and has led to cases of people committing suicide because it is too much to cope with-the pain, the stigma and the lack of emotional support from those who are closest to them-spouses, siblings, parents, friends and other loved ones. The isolation alone is enough to drive a person over the edge and then top it with what Migraine does to a person and it’s no wonder that Severe Depression is also a contributing factor. But yet Migraine Disease remains to this day a trivial and non-issue to the public as a whole. A lot has to do with the commercialization of OTC medications that tout being able to stop and cure your migraines. Well, if it were that easy don’t you think we’d all be storming the stores and buying this junk up like crazy? It may work for mild headaches that are brought on by tension and stress, but Chronic Migraine is a complex and neurological disease that to this date is still not fully understood by the medical community. And treatment for Migraines consists of second-hand or “off label” use of many prescription medications that were originally designed for dementia, Alzheimer’s, cancer, blood pressure, seizures, depression, bi-polar-just to name a few. There are no Migraine drug specific medications designed solely for Migraines as preventives.

How does Migraine affect the body you may ask. Here are just a few examples of what a Migraine Attack does to a person as a whole in the 3 stages of a Migraine Attack:

Phase 1-Prodrome:

  • Temporary vision changes that usually go away after 30 minutes (but not always)
  • Temporary loss of vision in left eye or right eye, usually one spot or on one side
  • Temporary blurry vision
  • Seeing bright spots
  • Seeing floating lines
  • Seeing shimmering, colored or flickering lights
  • Seeing zigzagged lines or different patterns
  • Changes often occur in just one eye
  • On very rare occasions, the vision change is permanent
  • aphasia: difficulty finding words and/or speaking coherent sentences
  • constipation or diarrhea (IBS flare ups are common)
  • difficulty concentrating and remembering
  • excessive yawning or sudden fatigue
  • food cravings and insatiable appetite
  • hyperactivity
  • increased frequency of urination
  • mood changes — feeling depressed, irritable, etc.
  • neck pain
  • sleepiness

Phase 2-Aura:

  • Alice in Wonderland Syndrome: a rare form of Migraine aura where the distinctive symptom is a type of metamorphosing, a distortion of body image and perspective, which Migraineurs know, while it’s occurring is not real. “Alice in Wonderland” syndrome can occur at any age, but it is more commonly experienced by children.
  • allodynia: hypersensitivity to feel and touch  to the point that what would be “normal” is painful
  • aphasia
  • auditory hallucinations: hearing sounds that aren’t actually present
  • confusion
  • decrease in or loss of hearing
  • increased sensitivity to hearing-unable to tolerate loud sounds
  • dizziness, clumsiness, unsteady on ones feet-running into things or falling down
  • hemiplegia: one-sided paralysis (occurs in hemiplegia Migraine only)
  • olfactory hallucinations: smelling odors that are not present
  • being more sensitive to odors that are present
  • one-sided motor weakness (occurs in hemiplegia Migraine only)
  • paresthesia: prickling, stinging, burning, numbness, and / or tingling, usually of the extremities or face
  • vertigo: sensation of whirling or spinning, not to be confused with dizziness
  • wavy lines (sometimes described as “looking like heat rising from pavement”)
  • “blank” or tiny blind spots
  • blurry vision
  • partial loss of sight
  • increased sensitivity to light-especially fluorescent lights and bright sunshine
  • unable to tolerate fast movements made on a movie or TV screen
  • phosphenes: brief flashes of light that streak across the visual field
      • scotoma: an area of decreased or lost vision. Some people describe scotoma as being like having tiny blank spots in their vision. Some compare it to tiny snowflakes.
      • unilateral (one-sided) (occurs in retinal Migraine only)

Phase 3-Migraine Attack:

  • headache
  • frequently unilateral (one-sided). The headache can shift from one side to the other, become bilateral (on both sides), or be bilateral entirely
  • often pulsating or throbbing
  • worsened by physical activity
  • duration of four to 72 hours in adults, one to 72 hours in children
  • Because the trigeminal nerve becomes inflamed during a Migraine, and because of its location, pain may occur around eyes, in the sinus area, and the teeth and jaw.
  • confusion
  • dehydration
  • dizziness
  • depression, anxiety, panic
  • diarrhea or constipation
  • fluid retention
  • hot flashes and / or chills
  • nasal congestion and / or runny nose
  • nausea and / or vomiting-or dry heaving
  • neck pain radiates to shoulders and upper back
  • osmophobia-heighted sensitivity to odors
  • phonophobia-heighted sensitivity to sound
  • photophobia-heighted sensitivity to light
  • vertigo
  • intense stabbing behind one eye (occipital Migraines) radiates to temple. Occurs on one side only

Phase 4-Postdrome, or the “Hangover”

  • fatigue
  • lowered intellect levels
  • lowered mood levels, especially depression, or feelings of well-being and euphoria
  • poor concentration and comprehension-may still have trouble finding words or making coherent sentences.

(Reference material obtained by Migraine.com)

Some migraine symptoms mimic the signs of stroke. That is why it’s vitally important that all Migrainers keep a Migraine Diary and know the pattern of their Migraines. Any Migraines lasting over 3 days is considered a Medical Emergency if the Migrainer hasn’t experienced a Migraine Pattern like that before, and immediate medical attention is required. Migraines can be life threatening as they have in the past caused a Migraineous Stroke in otherwise healthy people.

Chronic Migraines are classified when Migraines occur more than 15 times a month and aggressive preventive as well as abortive medications are sought after and applied to the Migraine Sufferers regimen. Chronic Migraine is diagnosed when the following criteria are met:

Has at least two of the following symptoms:

1. unilateral location

2. pulsating quality

3. moderate or severe pain intensity

4. aggravation by or causing avoidance of routine physical activity (e.g. walking or climbing stairs

And at least one of the following

1.  nausea and/or vomiting

2. photophobia and phonophobia

Treated and relieved by Triptans or ergot for at least 8 of the Migraines per month.

Here is quote direct from Migraine.com stating the impact of Chronic Migraine Disease

The burden and impact of chronic Migraine

Studies have revealed data about Chronic Migraine and the difference in the impact of Chronic Migraine when compared to that of episodic Migraine (EM):

  • Based on the MIDAS questionnaire (The Migraine Disability Assessment Test), the impact of Chronic Migraine is significantly greater than that of episodic Migraine EM.
  • Over a three-month period:5
    • 8.2% of those with Chronic Migraine reported missing at least five days of work as compared to 2.2% of those with EM.
    • 33.8% of those with Chronic Migraine reported at least five days of reduced productivity at work as compared to 2.2% of those with EM.
    • 58.1% of those with Chronic Migraine reported at least five days of reduced productivity in household work as compared to 18.2% of those with EM.
    • 36.9% of those with Chronic Migraine reported at least five days of missed family activities as compared to 9.5% of those with EM.

Chronic Migraine and stigma

In a study designed to “characterize stigma in patients with chronic and episodic Migraines, researchers found:6

  • Participants with Chronic Migraine scored higher on the Stigma Scale for Chronic Illness scale (SSCI) than participants with EM.
  • Participants with Chronic Migraine also scored significantly higher on the SSCI than a mixed panel of patients with chronic neurologic diseases; stroke, epilepsy, multiple sclerosis, Alzheimer’s, ALS and Parkinson’s disease.

The more I think the more confused I getSo given the facts and statistics of the impact of Migraine on the sufferer and on the economy I’m still confused as to why people just don’t get it? People see us suffering and so ill we can barely walk or talk right, and when we cannot tolerate light, noise or smell and cannot keep food down, yet they question that this is a real illness? These are the same people that don’t question the validity of a cancer patients illness when undergoing chemo and radiation and the effects it has on them. You sure don’t see people barking at those patients telling them to get out of bed and stop lying around all day and get a job, now do you? You don’t see cancer patients or quadrapaligics being bombarded with requests to do this or that, to get outside and they will feel better, or if you exercise you will feel better. You don’t hear people telling them to stop taking all their meds because it’s not making them feel better fast enough to meet the others expectations now do you? They see us at our worse and knowing full well we feel bad we cannot participate, but yet they continue to guilt us. I just don’t get it. Do you? Do you see them being told to “snap out of it” or “it’s all in your head”? Well heck no. Cancer is an Invisible Illness but it gets a lot more respect than Migraine Disease. Migraines can be more painful and debilitating than Cancer, not to downplay the seriousness of Cancer, but a lot of people recover from Cancer. There is as yet no cure for Migraines so the Migraine Sufferer continues to be in chronic, debilitating pain and with no empathy, respect nor validation from the public that it is indeed a true disease. And then you wonder why we suffer such severe Depression and repressed anger towards those who don’t get it and don’t want to get it. I just don’t get it-why people act this way. And if you do offer words of encouragement to a Migrainer I’d see this post first on what NOT to say: http://ohwhatapain.wordpress.com/2013/05/01/what-not-to-say-to-someone-in-chronic-pain/comment-page-1/#comment-825

I told you to stop bothering me-frustrated kid in bed

We go to any and all doctors imaginable to seek help, to seek adequate treatment. Some of us run into brick walls as there are not that many well-educated doctors well versed in the treatment and prevention of Migraine Disease. More and more lately patients are being “under-medicated” making their Migraine attacks worse by prolonging them and as a result increasing the pain and suffering of the patient. We the patient have to go online and search out the latest treatments and therapies and take them to our doctor to be given a new potential Migraine therapy regimen because the doctor hasn’t tried it or know of it.

Doctors

The insurance companies restrict our Migraine Medications and limiting to what we can get monthly through our insurance, totally overriding a Doctors express written prescriptions when we are prescribed the right amount of medication, and that too results in more Migraines because we’re not allowed to have our allotted prescribed dose because the Insurance Companies are now into the act of playing doctor. Or rather playing God to where we have to have our doctors contact them and plead our case so that the Insurance Companies can “consider” increasing our monthly rations of much-needed medications.

frustrated-faceI get so riled up when I hear of a fellow Migraine sufferer being treated as a drug addict or drug seeker! It makes me want to go ballistic! This is a chronic on-going pain condition, and pain needs to be treated with medication, and OTC medications don’t cut it for us who have Chronic Migraine Disease. We are being constantly experimented on with a mix of different cocktails to see what will work. We have to give it a 3-month time frame for a medication to reach its highest potential to see if it will prevent or reduce the frequency and intensity of the Migraine attacks. If that med doesn’t work it’s on to the next. It can take up to 25-30 years to find drugs that work because there are thousands of “off-label” medications that can be tried as preventives. As for the abortive medications they can become more complicated. For some people Triptans are life-threatening and they cannot be used. So here is where the Opiates come into play. And these medications are used as a last resort because of their addictive shall we say “history”. NOT ALL MIGRAINE PATIENTS ABUSE THEIR MEDICATIONS! Migraine patients know all too well if they use their medication too often and too frequently they will get caught in the “Rebound Migraine” syndrome in which it will take a course or 2 of steroids to break the cycle. But they also know if they overuse the Opiates that they will become addicted, so therefore they are only used when needed. This is where some uneducated doctors and those in the Emergency Room see that when a Chronic Migraine patient comes in for intervention because their medications have not worked and they are in excruciating pain and suffering, many are treated with disrespect as well as treated as drug seekers and get poor if any care. This is where Depression grows by leaps and bounds and can add to the risk of suicide when a chronic pain patient is not taken seriously nor treated correctly and with respect. This will rebound into a vicious cycle-the Migraine sufferer not taken serious by family, friends, loved ones, co-workers and the Medical profession and therefore leads the Migrainer into a deeper Depression that can and often does spiral out of control and if no intervention is enacted it can and has led to tragic consequences.

http://ohwhatapain.wordpress.com/being-treated-like-an-addict/

crying-tearsDepression and Chronic Pain go hand in hand. And it’s not just those who suffer Chronic Migraine that know this all too well. This goes for those who suffer PTSD, Fibromyalgia, Chronic Fatigue Syndrome, Aids, Lupus, Autoimmune Disorder-just to name a couple as there are so many “Invisible Chronic Illnesses'” to list. Depression has been widely stigmatized due to the recent tragic events in Sandy Hook and Colorado. But not all Depressed people go on random killing spree’s. Instead they harbor these feelings inside, they repress them as to not embarrass family, and they end up taking it out on themselves. Sometimes with tragic consequences-they take their own life as they feel they are not valued and not taken seriously.http://www.foxnews.com/health/2012/03/23/severe-headaches-tied-to-suicide-attempts/    http://www.usatoday.com/story/news/nation/2012/10/03/migraine-headaches-sufferers-therapies/1609505/It was estimated that in the year 2012 that up to 70% of suicides were a result from chronic pain. http://www.surgeongeneral.gov/library/reports/national-strategy-suicide-prevention/full-report.pdf The Human Psyche can be very vulnerable when it’s constantly under attack and there is no escape route that they can see but the ultimate one made by too many people.http://www.healthcentral.com/chronic-pain/c/5949/130560/fibromyalgia/ Suicide is on the rise and people need to wake up and see this as a serious Disease and stop Stigmatizing people. Suicide rate has risen for our veterans who come back and feeling out-of-place and often misplaced and they oftentimes suffer PTSD. They are not being treated properly and a lot as a result commit suicide. According to US News the Rate of suicide for military personnel for 2012 hit a record high-349. During 2012, there also were 60 suicides among active-duty members of the Navy, 59 in the Air Force and 48 in the Marine Corps. Throughout the U.S. military, suicides increased by nearly 16 percent from 2011 to 2012, figures show. The Department of Defense has been issuing annual reports that track suicides since 2008, said spokeswoman Cynthia O. Smith. Only 176 (which is 1 too many) died in active service-combat. http://usnews.nbcnews.com/_news/2013/01/14/16510852-military-suicide-rate-hit-record-high-in-2012?lite

crying and anguished faceChronic Pain is no laughing matter. It’s not to be taken lightly nor disregarded or disrespected. Given all this evidence I still have to shake my head in bewilderment and say again “I DON’T GET IT” and why don’t people get it! The public needs to wake up and recognize that not all Chronic Pain Illnesses need to be VISIBLE and to stop stigmatizing these diseases and treat the sufferers with respect and better treatment plans. Doctors need to be better educated in long-term Chronic Pain Management so we can benefit from less pain and lead a more productive life. I belong to a couple of Chronic Pain Support Groups on FB: CMA-Chronic Migraine Awareness and The Coolest Fibro Chicks Around Town. I also follow several blogs and websites where everyone has the same chief complaint-they are not taken seriously, they are not treated properly, they are scorned, disrespected, demoralized, dehumanized, stigmatized and in a lot of pain both physically and emotionally as a result. They are cast aside by loved ones, family and friends who chose not to understand or just don’t get it. I just don’t get it when you try to educate those around you to what is going on all it does is go in one ear and out the other! It’s so frustrating to talk to a brick wall-it bounces off and smacks you right in the face as a result. Your then labeled a whiner, a crier, a complainer and lazy. Totally inexcusable way to treat another human being. It makes me want to pull my hair out. We already feel bad enough as it is-with the pain and all the symptoms that go with it, and we lose friends as a result, we are often left isolated, abandoned and beyond misunderstood. We want to contribute to society and be productive. We want to attend family functions and not have to cancel. We want to go on family vacations, family gatherings, on shopping spree’s and have parties and go to parties. We want to do all this and more but for reasons beyond our control we are stuck in bodies that are Chronically Ill and we fight it for all we’re worth and sometimes it’s a losing battle. WHY WON’T PEOPLE LISTEN TO US AND UNDERSTAND US? I JUST DON’T GET IT.

Frustrated_girl1All we ask is what others give freely to those who are not ill: To be treated w/empathy, kindness, respect, understanding and to LISTEN to us and try to understand what is going on in our life and what is going on. Stop standing on the sidelines and judge us-jump in and help us. Even a small gesture like lending a shoulder or an eye can have amazing results. And to offer to do something without being asked like picking up something on your errands, offering to refresh an ice pack, or bringing a fresh glass of water to keep us hydrated w/o being asked, or reheating a heating pad, picking up after yourself as to not add to the burden, dividing up household chores when the ill person is down and out for a while until they get better, offering to cook a meal and bring it over. There are many things you can do to help out those who are Chronically Ill. But the most important thing would be to understand and not to belittle, criticize or ostracize the person and treat them as a leper and an outcast. We as humans need to have love, nurturing and understanding. And don’t bark orders at us like we’re healthy and expect us to do everything you can do and more because it’s just not possible-not without a high price to pay-more pain.

http://ohwhatapain.wordpress.com/pain-is-not-pretty/

sad20face puppyCall me crazy but I thought to attempt to put out an article explaining things a little better from a patients perspective might have some impact on regular people-that is if they read this blog. Those who suffer as I do will just nod their head in agreement, at least I think so, and they will say “been there, done that, I’m right there with you”. If everyone makes an attempt to better understand those who are chronically ill and come to a better understanding then maybe we can have a harmonious life, or at least be a little more compatible and hospitable towards each other. We don’t need to dehumanize people as that is not the way we were intended to treat our fellow humankind. We are to be loving, gentle, accepting and accommodating, Can we please try to be that way for the betterment of not just the Chronically Ill, but for all mankind in general. And PLEASE stop judging people. Learn to walk a mile in their shoes if needed to get a grip on reality. On the reality of a person who suffers Chronic Pain on a daily basis that is.

happy_faces dog and babyI want to get along with others and be happy when I’m not in excruciating pain. And I will NOT stop fighting these Diseases and I will continue to work with my doctors for better treatments. Until a cure is found, if there is that is, I want to be treated with love and respect. I don’t think that is asking too much. Do you? Don’t you want to be treated the same way as well? We’d all be so much happier wouldn’t we?

In closing I pray for more pain-free days for us-the Chronically Ill and I pray for more tolerance and understanding. Peace and Blessings to you all.

Julie

evangelism-bible-verses-1024x706

Update 5-4-13

 

This is not intended as a Medical site and this does not constitute Medical Advice in any shape or form.

Please consult your family doctor or a medical professional if you or a loved one is going through Chronic Pain and Illness and is showing signs of Clinical or Severe Depression so that they may get the appropriate treatment needed. Speaking from personal experience, when you enter the deep dark abyss of Depression it’s hard to get out on your own. You need help if not by way of Clergy by qualified Therapists who can help you navigate your pain management strategies and therapies. I have been fortunate to have had an intervention not once but twice by a dearly loved close personal friend. On the 2nd time I was so low I needed drastic Medical and therapeutic intervention. If it was not for the intervention of that dear friend I would probably be 6ft under pushing up daisies. Depression is not to be taken lightly nor to be ignored. Those who are in the deep throes of it usually cannot recognize nor want to, the deep trouble they are in and the slippery slope they are trying to navigate alone. DO NOT let this happen.

An do not trivialize the importance of online support. I have met MANY amazing people online who have been a true blessing and a Godsend. I have made many a good friend. I support those that need it and when I’m down I get the support in return. I wish I had turned to online support groups sooner, but better now than never. Thank you to all my online supporters-you are indeed amazing.

God Bless you all.

With much Love, Hugs and Prayers, Julie

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


dawn breaking

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

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

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

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

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

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

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

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

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

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

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

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

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

Julie

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

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