I've mentioned in a few posts if you've been reading along, right around September of 2014 I kind of lost my voice in the patient advocate world. I had a really harrowing experience with a surgery that went right, but treatment after went very wrong. It left me questioning pretty much everything I knew about doctoring and wondering if what I had learned over the years was correct. While recovering from that surgery I kind of faded into the background to lick my wounds a bit.
I'm beginning to feel a lot more like myself lately but it has taken a lot of time and energy and a lot of sitting on the back burner while trying to figure out who exactly I am again. While this has been happening I also fell into a new diagnosis which I was not quite expecting to affect me as much as my daughter, surprise. Again, I found myself down for the last four months while we waited for the big guns at the "University Hospital" to take a look at me. Well, that was disappointing...
In the last 4 months I did something different than the first time I was flattened by the medical community, I started to pay attention to patients. I'm horrible with asking anyone for help but I will stalk or creep your feed until you cry for mercy (ok, a slight exaggeration but not much). The things that I didn't know about I learned from other patients, there was a plethora of information out there for the picking and the amazing thing when I checked to make sure the facts were correct, they were. Imagine the Patient Advocate learning from the patient? Hmm, we normally don't have a whole lot of time for that, usually we're doing our best to listen to what you need or might like to see and getting your voice up to the right people but for us to be able to ask you for help, pretty unusual unless we end up flat on our back with restrictions for 4 months...and this is where I come into this conversation. I have learned more about EDS and POTs from patients than I have ever learned from my Electrophysiologist, Cardiologist or Rheumatologist.
Now we come to the reason that I'm writing this post. I was talking to my friend Molly from And then you're at Jax the other day about my impending appointment for Cubital Tunnel. Turns out she has already been treated for it and told me that by wearing an overnight brace for awhile she was able to hold off surgery but that she had gone through with Carpal Tunnel surgery and that was an easier surgery for her and she recommended it to me. Seems like a throw away conversation, right?
I got to my Orthopedic Surgeon's office and low and behold it wasn't Carpal Tunnel it was Cubital Tunnel. My Surgeon offered me the brace but he was trying quite strongly to talk me out of it and to think of another EMG and surgery. I on the other hand have been through 9 surgeries in 7 years, I'll wear a brace. When they brought it to me my eyes got wide as they strapped me into this brace 3 different ways in a position no arm really actually bends. Normally if I had seen this contraption I would have demanded surgery but because I was ready for it, I was determined. I strapped that puppy on my arm that night and slept with it until 4:30am. It's not fun, but it wasn't difficult to find a way to sleep with it and for the first time in years (yes, I'm a procrastinator) when I took the brace off at 4:30am, my fingers weren't numb. I spent the next 20 minutes rubbing the pads of my fingers against the palm of my hand shocked after one night.
Now, will this brace solve my problem? Maybe, maybe not but at least I can say that I gave the easy way a chance before I jumped into the hard way just to get it over and done. I'm proud of myself because I do way more jumping and dealing with the consequences than trying the easy way first. Sometimes less may just be more.
So, the next time you find yourself having a "throw away" conversation with another patient that has been there, pay attention you maybe receiving the information that gives you the upper hand at your next appointment. Thanks Molly, I really appreciate you taking the time to share this info with me, it's really made a big difference...