Another "Invisible Illness" Diagnosis

At 28 I consider myself a “pro” with describing and dealing with illness. I figured I could handle a diagnosis, seeing as I had one before. In 2006, I was a healthy and active. Then I suddenly fell ill with terrible abdominal pains, weight loss etc. After a few horrific months I was diagnosed with colitis and began treatment for it. I educated myself about the disease and worked hard to learn how to cope with it. I even shared the information with my friends and discussed candidly with them and family how it made me feel so out of control and unsure what the future would bring. Eventually, a friend and I even gave it a name, “Stan”, so that when out in public I could communicate that I was feeling unwell without everyone knowing the issue (ex: “I have to go, Stan is calling.”) It’s much more acceptable for people to think I have an awful boyfriend or relative then to know I’m having tummy issues.

Then, a few years ago I started suffering from what I thought were sinus/ allergy issues. I would have times where my head would just be in awful pain, noise and light bothered me and I would feel ill and exhausted. Seeing how I already had a pre existing condition I didn’t have insurance and could only rely on clinics and ER rooms. I would be told that I had a sinus infection and given medication. As it became more frequent the doctors would hint that I would probably need some sort of sinus surgery after I got insurance. That, at least, gave me the ray of hope that it would end. But no…

Thanks to Obamacare I was able to get insurance and the first thing I did was see an allergy doctor. She ordered a CT scan and the results showed a deviated septum. She ordered me to an Ear, Nose and Throat doctor who took one look at my CT scan and declared “very minor… no surgery needed.” When I protested that there was something very wrong he told me to come back when I felt the symptoms. A few weeks later I was back and after an exam and listening to me he stated he felt I had migraines and should see a neurologist. Months with insurance and still no real answer. I waited a month and a half to see a neuro doctor who ordered an MRI, and into the machine I went. It showed nothing so he gave a diagnosis of “chronic migraines.” Finally! An answer… but… he put me on several medications all of which made me crazy. Topomax made me so confused I couldn’t remember what to feed my pet lizard, Imitrex made me too groggy to do anything after a migraine, Prednisone did nothing for me but gave me withdrawls when I went off and another one made me feel exhausted (something I already feel from migraines!) and unable to breathe when I was active. So now I’m at the point where I’m waiting for my next appointment to discuss my next options.

I figured when I got the diagnosis I would feel free and more in control. But that has not been the case. I’ve had between 15-17 migraines a month, some so intense that I’ve stayed in bed for 2 days. Some friends have been helpful and offered to listen but as an intensely private person it’s difficult to discuss. Even now I can’t help but cry and worry for my future. I’ve dreamed of going to Grad school, adopting a child and traveling and now I can’t help but wonder, can I even do that? This diagnosis and the difficulty of treatment has shook me to my core because it is all so unknown. How do I explain my frustration, anger and fear with others who have never been in my shoes?

Little by little I’m starting to learn. I try to remind myself that I am still new to this and to take it day by day. It has taught me to slow down and take care of me and I enjoy and take advantage of the days I feel good now. I try to think that in time things will be more clear and maybe, when it is easier, the migraines will even get a name and I will not be so ashamed or afraid of them.

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