Well, it's official! Or, I guess I should say "half-official." ;) April 15th is the tentative date for my first appointment at Cincinnati Children's! *small sigh* I am grateful that I can see them sooner than July (we were told at first that the EDS clinic is booked until July, but they have been trying to work things out which has been a challenge for sure), but April 15th is still over 2 months away and I'm not feeling any better. :( So my neurologist is gonna try to be in touch with their physician priority line to get me in even sooner, but first I'm waiting to hear the names of the doctors I'll be seeing as she needs names as well as the phone number.
Updates:
Head: My headaches have still been very bad. I have to use an ice pack every now and then again since pain meds don't help. I'm very thankful for ice. :o)
Eye: My left drooping eyelid is still there, but sometimes people don't even notice it which I'm very glad about! ;)
Neck: I saw my spine dr. a few weeks ago and had flexion/extension x-rays of my cervical spine again. In addition to anterolisthesis (vertebrae slipping forwards onto each other), I now have retrolisthesis (vertebrae slipping backwards) also. On another note, my atlanto-axial instability is still mild thankfully, so I don't have to see him till January. :)
Shoulders: My right shoulder is still pretty loose and my shoulder blade pops out often, so my physical therapist wants me to see him twice a week now. My left shoulder is starting to become a problem since it has to work more than my right..
Heart: Lately I've been experiencing a lot of chest pain. I'm not sure if it's because my heart is always tachycardic (POTS issues) or if something else is going on. Praying that the EDS clinic will be able to find the answer.
Hip: Since my left leg muscles are weak, they're not able to hold my hip securely, so I'm now having lots of aching pain/crunching/popping. :( It makes walking painful!
Feet: This week the CRPS pain in my feet has unfortunately been increasing, but the lumbar sympathetic block I had on Jan. 30th gave me about 2 weeks of less pain so that's a praise! :)
I know I look "normal" on the outside, so I just wanted to give you a little picture of what's going on inside my body. :)
Stay tuned for more Cincinnati news!
Hey! I'm excited for your tentative date of April 15th for that hopeful appointment. I'm sorry to hear everything that's going on in your body. I'm praying for you, and any day could be a miracle, and it might be around the bend. I was thinking of you when i went to this new PT place. Its this super smart dude who loves research. He gave me this site http://www.bodyinmind.org/. That site is a group of people devoted to figure out chronic pain, and specifically stemming from the mind. I looked up a few of your conditions and they are doing testing that are still in clinical trails for some of them. But I wanted to let you know people are trying to figure this stuff out, and they could have a break through any day as well =)
ReplyDeleteHey John! Thank you so much for your prayers. :) I was thinking of you the other day, too, and was wondering how you're doing. How do you like that new rehab place? I hope it's going well! We haven't been able to see each other in a while! That website you shared is so cool! I'm really hoping that breakthrough comes in my lifetime.. ;)
DeleteThank you! Yes this new place seems to be a good place for me at the moment. I've only been once, but my next appointment is today. So i'm really thankful and excited for it. But unfortunately I'm at school, which is why I'm not up in the Portland area heh. How is your physical therapist your seeing? But I'm sure a breakthrough will happen =), I'll be praying for them!
ReplyDeleteI'm glad to hear that! You'll have to tell me sometime what you do at rehab. :) PT for me is going well, tho' it's very tiring and intense and my weak left leg isn't really getting any stronger still. My therapist is really "pushing" me! ;)
DeleteAh, so that's why I haven't seen you! Well, I hope school's going great! =)
Oh yeah! Well recently I've just been receiving dry needles to try to deactivate, active trigger points. But soon I'll they will be testing a wireless EMG for my muscles, to see if they are contracting correctly. Then hopefully doing some exercises in two weeks. Sorry to hear that your left leg isn't getting stronger, what do you do during PT? But glad your getting pushed to go more! =)
ReplyDeleteWow, that sounds like intense therapy! I hope dry needle-ing isn't too painful! I've had to have lots of EMGs, too. It wasn't very pleasant.. :\
DeleteWell, right now he's mainly having me do different shoulder exercises and stuff so that my muscles will be able to keep my humerus bone and shoulder blade from partially dislocating all the time.. Hopefully I'll be able to get some second opinions for that in Cincinnati. :)
Well dry needle-ing is the good kinda pain, if you know what I mean. Its the pain that you are laughing at on the inside, but partially crying on the inside haha. ohhh =/ well hopefully you have no more of those.
ReplyDeleteOhhh hmm. Well I hope hes good or knows the direction to go. But yeah again I think Cincinnati will be a great place!
But also, I've talked with many people, as have you. Some key things for people to get better(this dude at 18 surgeries in one case) was working on your Core and back stablizers(rhomboids, and latissimus dorsi), as well has pectoralis minor. Anyway just a few things for you to think about, but this dude had his body falling apart all over, but once his core(abs, trunk area) was solid, he started to be able to stabilize his body and gain strength. You probably have a extensive pt program, but maybe a few exercises on those, or on your off days may help!(I would try core first!)
Also some Pt's even though they have certification and stuff, they can still be wrong. So just kinda like I check the bible when people give me theological ideas or advice, I tend to check evidence, studies, research compared to advice from PT's. Some are super smart and don't make things worse, just at times i've seen some do things that made me worse, so i'm just warning ya!
Example: Lateral raise for the shoulder- If your holding the weight by your side and then making a perfect T with you body and arms, that is really bad. It causes shoulder impingement, and your arms need to be 30 degrees out from your body. Anyway, not that it is easy to look every exercise and every opinion up, just reminding you if anything hurts toooo bad, I would look it up in case! =)
Haha, well I really hope you'll see some benefit soon with the dry needling!
DeleteAnd wow, you should become a physical therapist! Those are all good tips! Wait, have I already asked you this, What are you studying at school? Physical therapy? =)
Yeah, unfortunately, I was told a while back that I have a right shoulder impingement, probably from all the subluxations.. It sure hurts!
Thanks!
ReplyDeleteHah thanks, but I'm studying exercise sports science: Fitness and nutrition, which is basically the same thing, but not haha.
Ohhh =/. I'm sorry again, and hopefully these Pt programs start working it out, but if not April is looking good or actually any day because, because any day could be your miracle day! =)
Nice! I'm not sure if exercise sports science is the same thing, but at OHSU rehab where I go, they have a lot of athletic trainers. :)
DeleteWhen I had hand therapy for the CRPS in my left hand, it made me want to become an occupational hand therapist. :) Haha, not sure if I'll ever be able to go to college to study something like that, but I can wish! :)
I'm sure you know more than 99% of people who are studying become a occupational therapist. So even if you go to college next year, you'll be so smart that you will graduate in no time! =) And yes, wishes and visions is always good hope, and they can come true!
ReplyDeleteHaha, aw thanks! :) Being a patient for those different therapies was a fun experience.
DeleteAnd whether or not I can go to college in the future, I'm excited to see what God has in store for me! =)
Is school pretty intense right now? Do you like what you're learning? :)
Sorry I didn't see this!! Hope your doing well!(Praying for you!)
ReplyDeleteBut definitely =)
But yeah, with kinda my senior year projects its hectic. But I like some of the classes because of the applications =P.
Aw, thank you! It was really nice to see you on Sunday. :) I just wish we could have talked longer!
DeleteOh :\ Yeah, projects are never fun. In my opinion, they're just as bad as exams..lol But I hope it's going well! That's awesome you're almost done with school! :)
Ya likewise!! Maybe next time I'll see you before your in your car haha.
ReplyDeleteHah, I agree. But thank you!!
Only 44 days left! Keep persevering!
Haha, yeah next time you're in town I'll look for you. :)
DeleteThank you for the encouragement! All week I've been impatient, wishing April were already here instead of March.. :( Lol, I'm definitely learning more about patience!!