I decided to chronicle my experience of going from misdiagnosis to living with Ehlers-Danlos Type III, and how it has affected most of my body. I am fortunate that getting a diagnosed led to my 15 year old son being diagnosed early, before he sustained any organic damage.

My hope is that my blog will allow others realize that they are not alone, and it's not "all in their head", it's very real and debilitating! I also hope that my Counseling background will inspire others not to neglect their mental health as EDS can push our limits; seek support!

Saturday, July 28, 2012

On my first dislocation, communication with my Aspie son and...a better week?

I just dislocated, or partially dislocated, my first joint! At least the first that I am aware of. This morning I woke up with a sore wrist, my right one. I could feel it was sore before I actually got out bed, but thought I probably just stressed my hands the day before, so I didn't really think much of it. It would just be a wrist splint day. I sat up in bed and waited for the initial vertigo to pass and when I was ready put some pressure on my hands/wrists to get up. Then I heard it, POP! I still didn't think much of it, other than it sounded different than the usual pops and crackles in the morning as things fall into place. It also felt different from the usual initial movement of things falling into place. It felt forced, harder and somewhat grind-ier. Then I felt the pain.

The pain from a dislocation/subluxation varies and managing a dislocation is not like in the movies, you don't have to bang yourself against walls and you don't necessarily have to rush to the Emergency Department. It's all going to depend on the joint, and on the nerves, tendons and muscles affected; then, whether there is damage involving any of these, and whether the joint is worn down so that it doesn't cause much pain at all. I also have a threshold for pain tolerance so, in my favor, I can probably cope with it better than most. I also don't whether the joint went in or came out, so I'll have to monitor the situation for the next few weeks and see if it gets any worse. Even if the joint went in and readjusted itself, the pain could last for weeks because it causes inflammation to the surrounding, regardless of whether there is damage or not. So, if the joint had popped back into place and I went to see my Ortho, he would not be able to see anything on an x-ray and I would seem like crazy person (LOL). Actually, my Ortho knows and understand that EDS causes a lot of pain and "weird" things to happen. (Most doctor's than know about EDS are actually quite fascinated about us) He just makes sure that there is no permanent damage that needs to be attended to and "attempts" to find something that will offer some pain relief.

I said it was the first dislocation/subluxation that I was aware of because I suspect that this is what is happening when I get bursitis and muscle spasms in my shoulder. They usually happen after a day when I have been active and have stressed my arms and shoulders. And, I've always thought that I've been hurting myself through the night and wake up with the pain. It also lasts for weeks on end and suddenly goes away. So my thought is that my shoulder dislocates/subluxates through the night, particularly after a day when I have stressed my shoulder; and it's always the left one. That is definitely something that I need to bring up with the Ortho, he may be able to prescribe some sort of sling to use through the day or even at night to prevent this from happening so often...and it is soooo often!

Dislocations/Subluxations was a subject I had to bring up with my son. He has never had one to my knowledge either. He also presents a challenge on two fronts. First, with Asperger's communication is difficult for him. He doesn't always let me know he is feeling pain, so I have to stay in-tune with his body language and ask him what he's feeling. A few days ago I noticed he kept laying on his belly and pulling his arms back. He was having back pain but never told me! When I asked him if he needed Tylenol, he said no. I had to tell him that, yes he needed Tylenol because this was a painful condition and I could tell he was in a lot of pain. Within a half hour of taking the Tylenol he was back to being his cheery self and interacting with friends. I also ordered some rubber-soled flip-flops with arch support that would offer cushioning so that he could be outside and wear all-day in the house. I can't walk barefooted anymore because it causes incredible back-pain; flat shoes and flip-flops like the one's at Old Navy do not offer support either and end up causing pain. Trust me, THICK RUBBER SOLE WITH ARCH SUPPORT! http://www.amazon.com/gp/product/B000KJ0TQQ/ref=oh_details_o00_s00_i00
I also let my son know about that distinctive POP and the pain he may feel afterward. I let him know that is something he needs to let me know about immediately so we can determine if he needs to be taken to the hospital or just monitored, but he needs to use his words!

The second situation, is that he has Bipolar Disorder and occasionally has rages. This is a risk factor because he does not measure the intensity with which he throws things, hits the wall or hurts himself. It would only be after he calms down that we could evaluate any damage to his body and it could possibly be extreme, such as dislocation/subluxationg several joints. The best we can do in this case is: make sure his medications are managed adequately, use his safety plan, call emergency services if necessary, and make sure my son is aware of the risks he is taking and have him actively and pro-actively participate in self-management for both conditions.

In the last post I had written about my allergic reaction to the surgical tape. That also means that I won't be able to use the physio-tape anymore. I found something that might be a suitable replacement, a shoulders-back posture support.  http://www.amazon.com/gp/product/B0019SW8DE/ref=oh_details_o01_s00_i00
I tried it the first day I got it just to make sure it fit, but haven't had a chance to properly use it. I won't lie it felt pretty uncomfortable, but I attribute that to already being uncomfortable because of the allergic reaction and the pain and fatigue from using my accessory muscles. I'm waiting to feel better to give it a proper try, then I'll give it my own full review; the Amazon reviews are pretty good.

I'm still on a pretty limited diet even 12 days post-surgery. I've tried to add new foods slowly but most of the time it's a disaster! I tried white rice yesterday, just plain rice, it ended up coming right back out; grapes almost did the same thing. I ended taking a Zofran and going to bed to let it pass. I also think I'm lactose intolerant and milk products like yogurt and ice cream also cause heartburn (I miss yogurt). So I'm still sticking to Jell-o, fruit cocktail, frozen ices, apple juice...Today I tried some frosted shredded wheat, just a few, and I let them completely dissolve in Lactose-free milk. My son uses Lactose-free milk because it causes an allergic reaction that turns into asthma, so we had it in the house. The frosted shredded wheat has been okay. I'm so happy! I loooove frosted shredded wheat! It has the most fiber of any cereal (more that Fiber One, Granola, Kashi, Honey Bunches of Oats, and Chex) and less sugar.

On that note, through the Ehlers-Danlos National Foundation I learned about something called idiopathic anaphylaxis and mast cell response http://www.ncbi.nlm.nih.gov/pubmed/17493503
which has been  linked to EDS. I have to read more on it, but it may explain why my son and I have all of these allergic reactions!

Well, all-in-all I've had a pretty miserable week. I do have the Olympics to keep me entertained, I'm particularly interested in swimming and gymnastics, sports I participated in but EDS took away from me, even as a child when we didn't know what EDS was. They're absolutely beautiful sports which demonstrate the beautiful and amazing, side of hypermobility as opposed to Ehlers-Danlos which is hypermobility with pain. I also have the Opera to look forward to tonight, I'll be watching La Traviata! I'll write a review that :) Anyway, tomorrow is Sunday and a new week begins, a chance to start fresh.

In the meantime...                           

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