All Over

Hi Guys,

All my hip injections are over and I am now up and walking around. I got up for a while today and had a shower- I really missed showers! And I didn't have a drop attack.. so I am thinking that this ordeal is all over . I can not say for sure yet but I am very hopeful. I a thinking that this was all worth it!
How's everyone else been?

Hip Injections

Hi all,

I am sorry I have not updated in a while. Monday I had my hip injection into my Right hip. It was not too painful on Monday but the next couple of days the pain got a lot worse. Today I dislocated the injected hip. I am still in pain but they were not actually as bad as I expected it to be. I have the next injection tommorow. Hopefully it will not be too bad and I can get back to 'living' after this weekend.

We have answers!!!!

Hi All,

I am going to call my doctor Dr. M for the sake of this blog.
Monday my book by Dr. Brad Tinkle arrived! Joint Hyper-mobility Handbook.. It is all about the management of JHS (Joint Hyper mobility Syndrome) and EDS and conditions that can come along with them and how to tell if you may have him. So I sat in bed and read the whole book by Wednesday (yesterday) as I had an appointment with Dr. M. We booked a private appointment and the last appointment of his day so that I could have time to ask  questions and he could access all of my concerns. I wrote a journal for the past 2 weeks so that he could see what is happening. And then I wrote down all of my concerns. It made it SO much easier as I didn't forget everything and he could address EVERYTHING! He said to continue to keep a journal for him.
What we covered:

1.  Drop Attacks: He said that the body is in so much pain that it sends a message to my leg muscles to cut off and make me drop as it weirdly things it will stop the pain. I am so happy to have an answer and happy for the treatment as well! I need an injection into each hip- sort of like cortisone but it is a different drug. Then I need to lie flat on my back for 48hrs (2 days). One is done on Monday the 12th November and the other is done Monday 15th November. Hopefully this will stop the drop attacks completely.
2. Insomnia: I  have only been getting a couple of hours sleep each night which is not good at all. He things maybe it is my hip but it could also be a sleep condition so I have to stay over night at the hospital for a sleep study.
3. Carpal Tunnel Syndrome: I was also diagnosed with Carpal Tunnel so at the moment we are watching and waiting trying to see what will happen. At the moment no surgery is planned Whoot!!
4. Slipping Rib Syndrome: I also have been diagnosed with Slipping Rib Syndrome so we are going to wait and see I may need a medical corset but other than that there is not much that they can do.
5. Gastroperesis: I have a very mild form of Gastroperesis so I am going on medication for that to see what happens hopefully that will be all!

Other:

1. He wants me to see a counseller who treats a lot of people will EDS to help me get through the emotional side. There have been a few suicides in the EDS community so he does not want me to ever feel like that so he is treating me before it happens. I am really looking forward to having someone to talk to who understands EDS
2. Neck Collar: He told me to get a neck collar for the days that my neck is really unstable or when I go on long car trips so that nothing subluxs or worse dislocates so this is a precaution. 
3. He wants me to get some silver ring splints for my thumbs as I am having trouble with reading i.e holding a book for long periods of time. I am not sure if we will be able to afford them though so maybe I will have to give in and read on my pendo? (like an IPAD)

So this was a fabulous appointment and all my questions were answered :)