Chronic Illness Challenge Day 3

Day three is all about how I got my various diagnoses and it really depends on which chronic illness we’re talking about. Some diagnoses were fairly simple to get for the most part and others I really had to fight for. Being sick obviously isn’t easy and eventually at some point you’re going to encounter a doctor or several doctors that refuse to acknowledge that you have a problem, even if the tests support a diagnosis or not.

And for my fellow zebras out there, we all know that doctors expect horses when they hear hoof beats not zebras. But zebras exist and to be blunt sometimes doctors are just stupid. They may be the one’s with M.D. at the end of their name but we are the ones that know our bodies best. We know how we feel and everyone has to remember that we have to fight for ourselves. And usually it’s a long difficult fight, getting someone to believe us might be one of the hardest things we do in our entire lives. But we can’t give up hope!

My heart murmur as I’ve said before I’ve had since I was born, the doctors in the NICU at OSU first found my heart murmur shortly after I was born. My parents later had to take me to a Cardiologist who confirmed the diagnosis. Though one thing that upsets me about this diagnosis is that doctor said that I would eventually grow out of my heart murmur and be perfectly fine. So to anyone else that has a heart murmur did the doctor tell you that you would “grow out of it”? Is that a common thing that doctors say as to not get you or your parents to be alarmed about the diagnosis?

One day I had a migraine for three days straight. It was the worst migraine I distinctly remember having in my entire life. And even huddled in my bed in the dark, feeling like my head is being smashed in with an aluminum baseball bat I kept thinking about all those warnings I read on the Internet. If you can classify a migraine as the worst migraine in your life, it could be something worse than your run of the mill migraine. I eventually had my boyfriend drive me to urgent care, where they told me that I needed to go to the hospital because they couldn’t treat me.

At the hospital it felt like someone was drilling into my skull because of all the noise and the fact that it was apparently a popular night to be in the emergency room. The nurse that checked me in was very nice and let my boyfriend and I sit in a quiet room out of the main area of hustle and bustle. As some of you may know it wasn’t pleasant once they called me back, the nurses I got were rude and treated me like I was just there seeking drugs. But by the end of the night I was treated for dehydration and given medication to help sleep the migraine off. The doctor on call referred me to my current Neurologist who is possibly one of the nicest people I know. And she has helped me drop my monthly average of fifteen migraines down to nine or ten a month.
I’ve always had a concern with the stability of my joints and I’ve had two surgeons tell me that they thought I have Ehlers Danlos Syndrome. I never Googled it in the beginning I just nodded and didn’t give it a second thought. Then I started getting more frequent joint pain and it got more difficult for me to do normal activities so I looked into this mysterious Ehlers Danlos Syndrome. As I looked into it, it was like having this giant neon sign just pointing out all my problems.

The next time I went to my neurologist I asked her how I would go about talking to a doctor to figure out if I have Ehlers Danlos or not. She asked me why I thought I might have it and I proceeded to twist my thumb around to touch the back of my hand and then bend it to touch my forearm. As well as a few other “party tricks” I can do with my loose joints. My neurologist gave me a very serious look and told me she would refer me to a rheumatologist.

I saw the rheumatologist in September and to be blunt, as soon as she came in to examine me I knew I had ended up with one of those doctors. The kind that will do their job and not give a thought to how you feel during the process of it all. And she looked at me like I was crazy and like that I was just another one of those people just there to waste her time. She started examining me and I could see her facial expression shift from one of barely contained anger, to something similar to amusement and by the end of the extremely long and by this point annoying appointment she said that she felt fairly confident in diagnosing me with Ehlers Danlos Syndrome Hypermobility Type.

Though I must say that’s the first time I’ve left a doctors appointment in outright pain. She pulled on every joint remarking on how loose they were and pulled on sections of my skin. The next morning with swollen joints and more bruises than I could keep count of. I’m going to try to refrain from going back to the rheumatologist because she was quite rude.

My Asthma diagnosis was a fairly straightforward one. I had lingering coughs, wheezing and difficulties breathing. It would get worse if I went out in the cold or if I was exposed to strong chemicals or perfume. After a few appointments with my primary care doctor she sent me to a pulmonologist at Children’s Hospital. After completing and exercise induced asthma test and other tests I left a few hours later with a diagnosis of Asthma.


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