21 August 2011

Catch up

It has been several months (okay quiet a few months) since I have posted here.  It has been an amazing year....mostly down, but that is okay.  It always makes you stronger.

About a month ago, I thought I was having a heart attack.  It was the most painful thing I have ever felt.  My chest just hurt.  I did go to the ER and of course as soon as the ER doc realized that I had EDS there was a battery of tests.  I was happy to find a doc that knew what it was, but was scared by all the tests.  I was told that there were some serious things it could be.  I could have had a bleed in my heart or a tear.  It was a scared bit while they did all the tests.  In the end it was not anything serious....well, in comparison. I was told that it was costo condritis.....basically with EDS the cartilage does not renew itself quickly because of the collagen problems. So, my ribs were pulling away from my breast bone.  PAINFUL!  Turns out there is nothing they can so for it. Takes time to heal and even longer for me.  Horrible 2 weeks of pain and very little activity.

On the 1st of September I am going to have shoulder surgery.  My right shoulder has been dislocating frequently.  I finally found an orthopedic doctor who knows EDS and has done surgery on others with EDS.  Dr. Wienstien has done 10 other shoulder surgeries on folks with EDS, with a fairly decent rate of success.  I am pleased to have him doing it......he is also the doctor for the Olympic basket ball team and the Colorado College hockey team.  I am so lucky to have fallen into this.  He only takes referrals and I am so thrilled.

I am terrified to have the surgery.  It is a scary thing for me.  I am not looking forward to having them cut me open.  No, really cutting.  They are not going to be able to do the arthroscopic surgery they usually do.  The doctor is going to have to cut open my shoulder.  Actually, it will be in my arm pit but there will be a scar on the front too.  Cutting anyone with EDS open is dangerous because of the lack of collagen reproduction at a normal rate.  So, it will take longer for my cut to heal....not to mention the actual shoulder work.  I have been told that I will be in my arm "thing" for at least 6 weeks and the physical therapy will be longer.  I have read some accounts that say it takes more than a full year to get all of the motion back and some still have pain.

At this point, I am scared to do it, but hoping this will help.  I was told that if I don't do it, I will have pain and it will get worse.  If I do it, then there is a chance at a better life with my shoulder and pain.  Hopefully it will be for the better, but I am sure it will not be worse.

I will check back in as I get closer to the day.  I am scared and will be looking for support here.

1 comment:

  1. I was thinking the other day that you had let your blog go. I am hopeful for your surgery and will be thinking good things for you!