Why Diagnosis is SO Important

I was diagnosed with EDS III in July of 2015. I was scared. I was tired of doctors telling me I was fine when i was in unimaginable pain. I was frustrated. Angry. Hopeless. So why is diagnosis so important? Well, being told to my face that "no, you're not imagining it, it's real" gave me the strength I needed mentally to fight back. 

Before that point in time, I was constantly told it was MY FAULT that I felt sick. I was responsible for how I felt. On my bad days I was told I was inconveniencing even my closest friends. Many of them decided being my friend wasn't their cup of tea. I got really depressed. "Why me?" was consistent throughout my day. People told me it was all in my head. Many thought I was faking it since no doctor could find anything wrong with me. The funny thing is some people still think I'm faking but that's another story for another time. 

Last July, I walked into the genetisists office with low self esteem, anxiety, and very depressed. I underwent the testing. They poke you and praud you. By then, I was used to doing testing. I mean they'd tested me for just about everything else in the book. Brain tumors, blood clots, fibromyalgia, and even some rare diseases that scared the crud out of me and still do. The genetisist had a file (mind you it was in a 2" binder) that contained every piece of medical history we could get ahold of. From ER visits to school nurse documentation to my dentist X-rays. We spent several hours going through it together (me, my parents, the geneticist, and several of his students that were observing my case). Then it was time for the Brighton Scale. They had me bend over to touch the floor, extend all my limbs, asked me which joints I could pop and how, and messed with my fingers, spine, and jaw. Since he had students in the room, my geneticist verbally pointed out some "ideal EDS characteristics" and my heart sank... After the physical exam was done, he looked us straight in the face and said "You have Ehlers Danlos Syndrome, no doubt about it". 

After that moment, I was flooded with emotions. i think I can recall crying in his office actually. We had done all the research on Ehlers Danlos Syndrome already so I knew exactly what this diagnosis meant. I would spend my life slowly degenerating my tissues. I would be in pain most if not all of my life. I risked dislocations, Skin tearing, muscle spasms, organ rupture... I have a 50% chance of passing it on to my children... I have POTS and my autonomic system is weak. Hardly anyone knows what I'm talking about when I mention my disease. I knew what I had to expect.

I spent the next 2 days when we got home in my room. I cried myself to sleep at night. I hardly moved. I didn't talk to the few friends that had stuck by me. My parents were worried I was becoming more depressed with the circumstances. Then, I snapped out of it. I accepted my fate. I mean, EDS was tossed around as an idea for about a year before I got the diagnosis so it's not like it was a surprise... I just needed time to let it sink in. A bit of a pity-party. And that's OKAY. It's necessary to deal with it. And I did. 

So you may be wondering why this post is titled "Why Diagnosis is SO Important" if I'm talking about crying and being depressed. Well, after those 2 days, everything changed. 

I finally had a Diagnosis. I knew exactly what was wrong with me. Scary symptoms like loose joints and muscle spasms were explained. I was no longer scared or jumpy at my condition as it evolved. I could do research. I knew the risks and how to help myself avoid symptoms when possible and especially I knew what to do when they occurred. I wasn't scared that I was dying. I wasn't scared that by being in pain there was serious internal damage. I wasn't scared that my heart wasn't working right when I had chest pains. I got the proper medication!!!!!!!! I was put on narcotic pain meds for my flare ups and a special muscle relaxer for my spasms that's made for EDS patients. I got physical therapy for my sore joints and weak body. I finally had help.

When people at school or my parents friends asked what was wrong with me, I had an ANSWER. I could respond with my diagnosis and NO ONE could take that away. I knew I wasn't faking. I knew it was real. And that gave me hope. Because now, NOW with a diagnosis I could find others like me. I could contact others with EDS with my questions, concerns, and my support. And best of all I could receive support. The EDS community welcomed me in so quickly and I made many friends very quickly. 

Without a diagnosis, I would still be severely depressed. I'd still be unmedicated, unhelped, and unaccepted. Diagnosis changed everything for me. All for the better (once I accepted it). 

If you think you could have Ehlers Danlos Syndrome, do some research. Find a diagnostic geneticist and get the testing done! It's worth it to KNOW. And the security that comes with knowing is worth more. 

Yours Truly,

Broken but Beautiful 

SUMMER updates

So, I haven't posted in a long time but I have quite a few updates!!!

About a month ago I underwent a full scale of autonomic testing at Stanford with Dr. Geradeh (forgive me if I spelled that wrong). This included a sweat test, tilt table, and several others. Basically they confirmed I have POTS/Dysautonomia (which we pretty much already knew). However, we also discovered something. When the tilt table went up I began to have extreme pain in my legs and feet. The doctor said that the more I felt the pain the lower my blood pressure dropped until I almost passed out. They had to stop the test prematurely for my safety... But this led to the diagnosis of neuropathy. Which SUCKS.

In other news, I recently saw my neurologist at UCSF. Dr. Strober is always hilarious honestly and he has great manners with being considerate of patient wishes and treatments. I was taking a medication called SPRIX (as needed) for my migraines. Basically it's a liquid torridol nasal spray. Loved it. It kept me from getting hip injections thank God. But unfortunately the makers of SPRIX have stopped producing it so I went in to see about other options. He prescribed an anti-inflammatory pain medication and told me that if the migraine doesn't subside that instead of hip injections (because I have confirmed POTS) I really should be doing an IV with a bag of fluids EVERY migraine. Now this worried us just because I already have quite a bit of vein scarring from IVs but hey, the docs orders will be followed.

I had a migraine (ironically) on the way back home. A whole 4 hour car ride. Perfect. So we went straight to the urgent care facility and I got hooked up to an IV. Honestly, the pain meds kicked in a lot faster with the IV vs the injections. And I didn't have to deal with the bruising or cramping sensations for days after. The fluids helped A LOT, I think. Usually I feel dazed the next day and have dry mouth and am extremely tired, but the next morning I was pleasantly OKAY. That's new. Me likey.

In other news: I GRADUATED HIGH SCHOOL. Yes, I did it. Diploma and all. I got to walk at the ceremony even in the 100 degree heat and I had my wheelchair to sit in during the speeches so that my back wouldn't go out on me. I'm officially DONE. And it feels oh so good! I plan on taking a semester off next school year and instead volunteering my time at the local middle school helping with their musical. I really just need the semester to focus on healing and strengthening my body.

Speaking of strengthening, I have lately been attempting to go to the gym and actually eating right, gasp, I know, big shocker. But, I really do think it's time I took hold of my health and started working towards a stronger body. Maybe with more muscle tone I won't have to worry about dislocations as much. And hey, if I can fight through the pain to get in shape, I can do anything! So, here's to trying!

That's about all the updates my fingers can get typed out for now. I'll try to be more current with my updates! Thanks for reading!

Yours truly,
Broken but Beautiful