Health News Doesn't Have to Be Bad News

I'm all braced up, and continuing my lovely collection.  I currently have 2 ankle stabilizers/braces and a really intense back brace.  I'm planning on getting compression garments for my hands and knees for sure, and possibly my elbows and shoulders.  I am thinking about looking into a SI belt as well, that I can wear when I don't want to wear my entire back brace, but still want my SI joint to stay in place.
Also, I'm starting occupational/hand therapy (OT CHT) and physical therapy (PT).  My amazing physical medicine and rehab doctor agreed to let me try a TENS Unit for pain relief.  So, I am going to have the occupational therapist or physical therapist set me up with one that insurance pays for (not the crappy OTC ones).
The OT CHT or PT is supposed to teach me how to tape different joints with something called kinesio tape and leuko tape.  The LeukoTape is my favorite.  Kinesio tape helps with stabilization and LeukoTape actually can work as a brace and hold bone in place.  A great example is the patella/knee cap.  I have had many issues with my patella dislocating and the pain that it causes when it dislocates is excruciating.  It makes you seriously want to call an ambulance and go to the ER.  Both times I have dislocated my patella, it was pre-diagnosis and I put my patella back in place myself.  I can't even describe the pain!  LeukoTape literally holds the patella in the proper place.  My patellas are already not aligned properly and so moving it to the right place and keeping it there is amazingly different.  So, they are supposed to teach me how to tape myself up so I can use that as an alternative to a brace sometimes also.
Another thing!! THE WEATHER IS FINALLY BECOMING MY FRIEND!!!!  The sudden drastic changes and the crippling cold were both killing my body.  It didn't help that I didn't have alot of the medications figured out.  My pain was so much worse than it is now.  Honestly, I still have pain and it's still annoying, but it isn't as bad as it used to be.
I also am really excited because I went to my physical medicine and rehab (PM&R) doctor yesterday and weighed in (with my back brace and ankle brace on) 10 lbs lighter than the previous time I saw him.  I have lost 10 lbs and plan on continuing.  I am really excited though because with all the bracing, taping, compressioning (not a word, I know, don't care lol), my ability to exercise will improve. These ankle braces and the back brace are really helping keep the main things in place.  So I'm really excited about it. My PM&R also said he doesn't need to see me until October unless I need something sooner.  Thats really encouraging for me too!
One last thing... and I think I'm most excited about this part.  At my PM&R appointment yesterday, my doctor told me some really surprising news.  First of all, I want to mention that this doctor is one of the best in the state and is acknowledged nationally as well.  He doesn't see new patients, and primarily works with major trauma victims in the hospital.  He is only working with me because he knows my dad really well.  Yesterday he told me that hypermobility syndrome has impacted his life in a very personal way recently.  I asked what he meant and he told me that his daughter has recently been told that she is very hypermobile and has been diagnosed with hypermobility syndrome.  She currently has an appointment with the genetics clinic that specializes in Ehlers-Danlos diagnosing.  To be very very clear, I'm not happy that she has hypermobility syndrome and alot of pain.  I'm not wishing that she is diagnosed with EDS either.  The only reason I'm excited about this situation is because now my doctor is going to become an expert on EDS because of the personal connection.  So, not only do I have an incredible doctor, but I have a doctor that has a new motivation to learn as much as possible about my condition.  He already has treated Hypermobility EDS (HEDS) patients, but now, it's a whole new level.
Basically, things can be hard.  DME (durable medical equipment) is really expensive and so is insurance, bills, and gas to get to appointments.  Appointments take up alot of time and energy and I really don't enjoy them.  Blood work sucks and so does pain.  Life doesn't have to always be perfect for us to find joy.  I have no idea what tomorrow will bring, but I know that God is with me every step. So, finally, I'm able to share some really good news.

"Anyone can give up, it's the easiest thing in the world to do, but to hold it all together when everyone would understand if you fell apart, that's true strength."

Stay strong!
Carley