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Invisible Illness Week Starts TODAY!

Posted Sep 26 2008 5:17pm 1 Comment


Today is the start of Invisible Illness week.


I was reminded way too much recently that I have an invisible illness. I suffer from Migraine Disease. I also suffer from Depression.

The Depression may come and go, but the last couple weeks were just awful. It was brought back on by a drug, Inderal, that I was taking as a preventive for my Migraine Disease.

Yes, sometimes the drugs we take have adverse side effects that seem to put us back a few steps. I spoke with my doctor today and I am tapering off of it and seeing him next week.

And just for those of you who may think that living healthy or breathing deep will "cure" Migraines - I already do all of that.

I tried the natural approach for almost a decade as my Migraines got progressively worse. I hated the thought of having to be on a drug for the rest of my life. I tried to just suffer though an attack - not even take Advil - and you know where it got me? In the doctors office for some preventive medication!

If those things work for you - I really am truly happy for you. But please don't preach to me how your way is the ONLY way - I've tried it. The only way I can even somewhat function in my daily life at this time is with preventive medication.

Yes, we Migraineurs get a slew of different reasons thrown at us as to why what we are doing is not the right approach. That I can think of off hand, I've been told "no more caffeine", "get pregnant", "breathe deeply and relax", "try chiropractic", "try holistic healing".

Ya wanna know something people: I've tried it all!!!!! Well, except for the getting pregnant one. That one will have to wait for a very long time.

Having an invisible illness is a sad and lonely thing to go through in life. It take so much some days for me to wake up and face the day. I take a handful of supplements every morning, on top of my preventive medication. So it's not like I'm taking just the preventive. I take 6 different pills before my preventive, and that's just vitamins and minerals.
Sometimes we all just want to scream SHUT UP to the "have you tried" and "you are attached to your pain" people.

Walk a mile in my shoes and tell me that what I'm doing is wrong. Tell that to anyone with Cancer, Fibromyalgia, Diabetes, Depression, or Chronic Fatigue Syndrome. It SUCKS!!!

But, as my favorite saying goes:

"The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." Ben Okri


I will be greater then my suffering. This disease has made me want to make a difference for myself and for others.

Awareness is key. I intend to fight for a cure, to fight for better doctors, and fight for all of us out there suffering. "Safety in numbers" as they say. Together we will change the face of Invisible Illness.
Comments (1)
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I too have an invisible illness, and had no idea there was a week for it.

I have Meniere's Disease.  It causes sudden onset (and let me tell you horrible) vertigo, fluctuating hearing loss (that leads to total hearing loss), tinnitus, and aural fullness (yes, I feel like I have wet cotton in my ears all the time.)

I also have Migraines, hypothyroidism, Celiac's Disease, and I'm bipolar.  Let's see could the fates pick on me much more?  (I know it could be much worse, however, my doctor does say that Bilateral Meniere's is one of the worst diseases you can get that doesn't kill you....it's a disease of Random Punishment, you never know when the punishment will happen, but you are always expecting it.)

I too had a lumbar puncture.  I'm so sorry for your experience.  I had mine done at Duke, and my doctor doesn't think that there are "normal" readings for anyone.  My readings were absolutely normal, but she decided to put in a little artificial CFS to see what would happen.  All of a sudden, my headache was gone, I wasn't dizzy any more, and I could hear what was being said behind me!  Yes, I could Hear!

She is pretty positive I have a CFS leak.  I'm going in on Wednesday to look for the leak and get a blood patch.  This could change everything.

Most people who have Meniere's who have been tested have high CFS, I'm the first one who has responded to additional fluid being put in.

I'm happy my doctor uses empiracal evidence to see if someone really has low or high pressure because if she had just trusted the "normal" numbers they would never have found out what is wrong with me.

I hope you get relief from your migraines.  

I've been to so many doctors, for so long for so much.  For example, I was finally diagnosed with Celiac's disease just 5 years ago (I'm 47) They told me I had fibromyalgia, IBS....and all I needed to do was stop eating gluten.  But it took finding the right doctor, for everything, it takes finding the right doctor.

I really wish there was a way to find the right doctor without having to waste so much time.

I sincerely hope that you can find the right person to help you.

Don't worry, I won't ask if you've tried this or that.  But I will encourage you to keep looking, you never know what you might find.

Good luck!!

wendy

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