jdillard's Journal

So I went back to the doctor's office on Friday because I still wasn't getting any better. It was a hard appointment, but it went okay and I'm so grateful for my doctor--he's so great and I appreciate him being just kind straightforward and honest with about things. But anyways...here's kind of a summary on how my doctor's appointment went/what was said:

 

  1.No school up on-campus for Fall semester. School starts on Monday, and the doctor told me that unless I had some miraculous recovery (which he didn't find likely especially since it's a life-time/chronic thing we're dealing with) over the weekend he didn't see how it would be even be a possibility. I agreed with him and understand exactly where he's coming from. Although, I may try and see if there's a couple of online classes I could perhaps pick up--giving me something to still do, keep busy, and keep progressing towards my degree.

 

  2.There's nothing else we can really do--because there is no cure or really any treatment (other than the anti-inflammatories, pain meds, surgery, and physical therapy) for the ehlers danlos. So, he asked if there was any chance of getting in sooner to the specialist in Washington, but I told him that I'd talked to them again but that there's no more opening (the doctor is only in the office once to twice a week) but that they'd call if something came open. So he wants me to finish the steroid pack/treatment, go back onto my old anti-inflammatories and take them (because that's already the strongest dose), continue taking my ultram (a non-narcotic pain med), and then he increased my other pain medication a little bit so I can take those as well, as needed. Then, we will wait and see what Dr. Byers, the specialist in Washington, says and if he has any ideas and/or suggestions.

 

  3.Finally, my doctor was a bit worried about me using my crutch that I have been because of the strain it puts on my upper body. I told him that that's partly why I've just been using the one crutch--so that I wouldn't use the other with my shoulder that I just had reconstructed--that I don't use them at home, but they've wanted me to use it while I'm out, not necessarily to take the weight off but more to help stabilize me. I explained to him that it's kind of between a rock and a hard place right now--use the one crutch and put strain on my upper body to help stabilize me so that I won't trip, fall, or have any problems or don't use and risk tripping or falling and causing more damage. So, he's suggested that I don't use my crutch anymore when going out, but rather use my wheelchair (with someone else pushing me)--not because I would be wheelchair-bound but to help try and preserve my joints as long as possible. He said that my joints are just wearing out fast, it's part of the disease process, and there's nothing really that we can do. So, we'll use the wheelchair to try and help calm and slow things down.

 

It was hard to hear stuff because I'm stubborn and I want to be able to go and be out doing alot of stuff. I think I'm still trying to let this having EDS and knowing not to do certain things is still sinking in sometimes....It's finally been almost exactly one year--to the day--of when I was diagnosed and before that I was very, very active with sports and running around doing things (because even after I'd have numerous injuries we didn't know what was wrong and I'd just keep trying).  Things are okay though--you just take each day as they come and am grateful for all that I have! I truly am blessed with so much! Thank you for all the support from everyone on here--the prayers, hugs, thoughts, and friendships!!! I'm so glad that I found this website! Thanks everyone!!!