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


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Happy New Year

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

Migraine-eye pick pain

 

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

pulling-hair-out

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

meditate

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

Migraine zombie

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

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

http://youtu.be/oT8awm90zl8

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

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


crying and anguished face

5-17-13

 

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

playing in water

 

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

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

lonely

 

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

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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.

 depression

 

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

 

purple angel

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

blue face of depression

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

operation

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

ExcedrinMigraineFAIL

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

 

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

 

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

Julie

 

People Test

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


5-14-13

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

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

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

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

Until next time Blessings for a pain free day. Julie

 

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

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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

My Mission thus far to search for Chronic Migraine coping tools to add to my Migraine Survivalist Kit-updated 5-3-13


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Oh the sun. It’s great for normal people but to those of us who suffer Chronic Intractable Migraines seeing the sun is like being set on fire like a fictitious vampire exposed to direct sunlight. The sunrays feel good on your body. but are so bad for the eyes. Making the Migraine attack more unbearable as the pain increases in sharp stabbing pains when outdoors, or even opening the living room drapes. I often feel like a vampire-more comfortable in the dark than outside in the bright sun. Overcast days are good as long as it’s not raining or snowing. We don’t ask for much huh? Photophobia is a common problem with most Migrainers and starts in the Prodr0me stages, but can last through most of the Migraine attack.

Over the past couple of years I’ve tried in vain to find the darkest tinted sunglasses possible to block out the glaring sun. But I have not hand much luck as to date. What appears to be dark-colored lens doesn’t always mean it blocks out that much of the light. I have lost count out how many pairs of sunglasses I’ve bought the past 2 years alone. Maybe 6 or 8? The ones that were just pure crappy I tossed them. The local stores do not have much of a selection to go by, and frankly my budget will not allow me to go to a specialty Migraine eyeglass manufacturer and cough up almost $200.00 for just one pair-and that’s not even RX glasses. So just today I went to Amazon and for around $30-40.00 I got 3 pairs of sunglasses hoping that these will work. They are biker glasses and have foam inside the frames so they fit close to your face and block out the wind. My hope is that they block out as much bright light as possible. So this is the selection of what I ordered:

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61snno8VyxL__SL1000_ Sunglasses for Migraine Survival. Got this pair today 4-27-13. They are not dark enough to block the sun as much as I’d like, but they are polarized so there is no glare.

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These don’t really block the sun that well, but my RX glasses fit inside perfectly and the foam padding makes these fit close to my head and are comfortable. I guess I will keep them.

So we shall see. Hopefully 1 pair that works will make me happy. Two and I’d try to teach myself to do cartwheels, even thought I’ve never done them before in my life and I’m notoriously a Klutz, and that is meant to be with a capital “K”.

I have used on a nightly basis my H2EO Ultrasonic Diffuser with a mix of Therapeutic Grade Essential Oils. Over the past 3 months I have collected over 50 different essential oils and a few books that have recipes and hints for doing your own blending. So I’ve tried my hand out at making my own blends for the diffuser as well as for massage oils.  The model I got is pictured below. It works quite well and has 4 program modes and holds 8 oz of distilled water. When it gets down to 2 oz it automatically shuts itself off. I have a big problem with manufactured scented products, but I have no trouble with essential oils.

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I have the Breo iSee 371 massagers which has been of some help. I’ve used it like crazy the past 2 days. You make it fit as snug as you can stand it and it will puff up with air, heat up and then vibrate to massage the sore temple and eye areas that are common with migraines. I do have to admit it is on the noisy side so if my migraine has me too sensitive to noise I will wear ear plugs. This runs on AC or Double AA batteries. If you use the batteries it’s portable and you can use it on car trips and plug into the base control unit the supplied earplugs to use the music feature. Or use your own MP3 player. The Breo is pictured below.

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I have also received and mixed for FM muscle spasms and pain Veterinary strength Absorbine and DMSO. 4 oz DMSO to 3 oz Absorbine in a lotion dispenser and rub on sore spots. I picked up this hint by reading some blogs. It smells minty and works pretty well although I do not recommend it for everyone. If Absorbine Jr. bothers you then you want to steer clear of the stronger stuff. And this is in no means an endorsement. These are just ticks and tools I’ve picked up to help me ride out my Migraine Storms. I have found this works best for ME than OTC pain liniments.

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I have also acquired and am using the Heavenly Accupressure mat. It feels pretty good to me but I’m use to this sort of thing. For others you will want to use the guidelines, if this is something you wish to try, by using it in 5 min increments and building up time. It is best if you use it on bare skin. I will lie on it for almost 20 min per side and really feel the blood circulating. This helps with the pressure point tenderness and pain and increases circulation.

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For deeper muscle penetration I have acquired and use on occasion The Soft Percussion Thumper massagers. It works deep into the muscle fibers unlike typical massagers and works out the soreness. If the FM flares up too bad and my tender spots on my upper back, neck and shoulders are too sore I cannot use it because it hurts too much. But when my neck and shoulders are really sore from a marathon Migraine I use this and would not imagine using any other type of massagers.

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And for those body aches that won’t go away and the Hot Epsom Salt bath doesn’t do the trick, I have this large heating pad that has a foam insert so you can use it wet or dry. My daughter has taken off with this and I will hunt it down after I’m done with this post.

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Also sometimes during a migraine when I retreat to my room and curl up in bed I take my microwave bed buddy and booties, as at times during a migraine it’s easy to get chilled and besides the bed buddy is great for shoulder tension and pain.

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And I cannot do without my oversized eye mask. Even though I made sure my bedroom is dark, with room darkening blinds, foam backed curtains and dark blue walls and no window in the adjoining bathroom, to a Migrainer in a full-on attack any light, even low light, has to be blocked or the ice pick occipital Migraine will peak at it’s worse (if it’s possible to get worse). So utter darkness is my friend, not my foe. Ironic that as a child I feared the dark. Now I crave it. What a reversal.

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And I cannot do with the most simplest of tools that I found out about by one of my Migraine Blogging Mentors. Plain ole simple Sea Bands. Wear them while I take my Zofran and chew on organic peppermint candy or take a whiff of pure essential peppermint oil-1 or 2 drops on a cotton ball is all I need. I found peppermint works best for me, ginger works best for others.

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Update 4-27-13

I just knew after I posted this I forgot some things that are in my Migraine Home Survivalist Kit. These help me ride out the storm when a Migraine Attack occurs.

My Cluttered Bedside

My Cluttered Bedside showing all my essential Migraine Survival Tools at arms reach

My side of Headboard

My side of Headboard with my aromatherapy diffuser, iPod, and a couple of bottles of essential oil rubs I blended

My Bedside Table

My Bedside Table with my Bedside Emergency kit in tote w/meds and notebook for recording meds taken

My Bedside Table

My Bedside Table Emergency Kit top layer-peppermints for sour stomach, stash of earplugs and saltine crackers

My Bedside Table

My Bedside Table Emergency Kit bottom layer-all my duplicate abortive meds, Rolaids, straws and q-tips, alcohol wipes for Imitrex Injections.

My Cluttered Bedside

My Cluttered Bedside on floor near bedside stand I have my Breo Eye massager, Absorbine, DMSO and the extra bottle contains the Absorbine and DMSO blended ready for use on FM pain or temple/head sore spots.

Top Drawer of my bedside table

Top Drawer of my bedside table contains my collection of Theraputic Grade Essential Oils. Kept in dark cool spot to use in diffuser or make oil blends-bottom drawer contains empty amber bottles, extra nasal cannula tubing for O2 and extra hand wipes and mints.

My side of Headboard

My side of Headboard up on top contains my backups of Migranal Nasal Abortive Spray and extra earplugs.

My Stash of various ice packs

My Stash of various ice packs in the freezer ready for my use. My favorite is the old fashion ice cap very upper RH corner-it lasts longer as the ice cubes slowly melt in the insulated bag and the outside is soft material so I can put it directly over my eye socket.

My Supplements

My Supplements, Minerals and Other Nutritional support for health and for Migraine support

Emergency Migraine Meds

Emergency Migraine Meds-comparison side by side. LH is kit I carry in my purse w/all meds needed for Migraine Abortives and RH is my bedside Emergency kit w/a double of my Migraine Abortive Meds. Pretty expensive to suffer from Migraines.

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I got a Buckwheat pillow for sleeping-after reading reviews it’s suppose to help w/neck pain and migraines. I got this 5-2-13 and already I can tell there is not as much pain as I had before when I get up. It’s a little stiff at 1st but actually has gotten a little more comfortable. I got also on 5-2-13 Badger Stress Soother Balm, Salonpas pain patches and CryoDerm Pain Relieving Roll on. The patches come in 7 pouches that are easy to travel with and they include 20 patches each travel pouch. Size is 2.56 x 1.65 so it’s for smaller areas. Wanted to get some larger ones for shoulder and back but too much $$.

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Today 5-3-13 I got Tiger Balm and Sombra Cool Therapy and Tiger Balm Extra Strenght to add to my Salonpas pain patches, CryoDerm Pain Relieving Cryotherapy Roll-on and Badger Stress Soother Balm.

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I got also 5-3-13 this bigger purse than the original one. It’s roomier and it is definitely the size of a carry-on bag but if I have to carry my portable kit along w/a couple of roll-on gels for pain it’s needed. The other bag went back.

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5-3-13 Inside view of new bag-larger and roomier but hard to tell from this angle. Won’t bore you with more pictures.

These are just a few extra tricks and tools that work for me that I’ve found them along the way. My portable Migraine Toolkit I listed in an earlier blog for tips and tricks I’ve learned to cope with Migraine along the way as it interferes with daily life. I hope you have found some really good tools to help you. Now I’m off to use my Bed Buddy-my neck muscles are pretty stiff from the past 3 day Migraine. So until next time wishing you all a Blessed Pain Free Day and be Happy.

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Blessings

Julie

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 wish to incorporate any of these items into your Migraine preparedness toolkit. This is not an endorsement for any of the listed products. This is just the brands I happened to buy that I tried and found to be keepers.

Healthier Gluten Free Carrot Cake


My healthier Gluten Free version of my carrot cake went live on this Migraine support site. They are gathering Migraine and Gluten free recipes to make a Migraine safe cookbook. If you have a recipe to submit you can do so-there is a link at the bottom of the page how to sign in and proceed from there.
(PS-if you don’t suffer from Migraines or have a nut allergy, add 1 cup of chopped walnuts to the cake batter when you mix in the additional ingredients.)

When you suffer from Chronic Migraines it’s hard to find ready to eat items at the store. I have been finding ways to alter traditional recipes to make them healthier and Migraine friendly. I added the gluten-free because my husband has Celiac, and the Gluten free flour mix I use is Red Bob Mills All Purpose Baking Flour Mix. I think I got that title right-I’m trying to type w/o my glasses. Fibro and Migraine Fog double time today. I cannot find my glasses anywhere nor can I remember where I last had them. So I’m typing this 1/2 blind. But instead of using vegetable oil I use unsweetened applesauce. For the sugar sometimes I will use raw sugar. I make sure everything I use does not have a hidden source of Soy or MSG as it’s a trigger, as well as nuts-that is why I omitted them in the original recipe but if that is not your trigger adding walnuts makes it tastier and I will finely chop some and cover the top of the frosting before serving. Then I know I can’t have any or leave a section clear of nuts so I can. Nuts have a high source of natural occurring Tyramine and if you follow the NHF or Diamond Clinic Low Tyramine Diet for migraine prevention nuts is on the list of no-no’s.

But even with the applesauce this cake is moist. I use an oblong cake pan with a clear lid when storing. It must be refrigerated after the 1st day as there are preservatives or chemicals in there to give it a longer shelf life. I hope you enjoy it. My husband and daughter do as does my best friend.

http://www.relieve-migraine-headache.com/carrot-cake-with-cream-cheese-frosting.html

 

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When you get a chance check out this site and get my recipe.

Until next time be happy, healthy and have a pain free day.

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


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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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