04 March 2010


  I has been a long couple of weeks.  Everyone is feeling better now and that makes me happy.  Kids are being kids and driving me nuts sometimes, but I would not trade them for the world.

I went to see Dr. Rose yesterday and nothing good came of it.  The visit was actually kind of depressing.  I found out that the PT I have been doing is actually doing more harm than good.  My SI joint is worse than it has ever been.  The ligament is so stretched out that it will never be normal again.  Sucks.  She also hurt me by stretching the SI joint to see how much damage has been done.  PAINFUL.  I am still not pain free this morning.

I asked her if I could see a geneticist.  There is not one on the VA payroll.....go figure.  So, now  I have to wait to see if they will out source such a thing.  I am guessing no.  We will just have to wait and see.  I am hoping they do.....it would be nice to see someone who has seen EDS in a person before and not just read about it.

My meds have not been changed, just increased.  The night pain in my legs is the worst.  She told me to just take my sleeping pill earlier in the evening so by the time I am ready to sleep that I am sleepy enough to go right to sleep and not feel the pain.  Ha, we will have to see if that works....I don't believe it.

I am back to where I started with no hope of improvement.....it is a bit depressing.  I am trying hard to get myself in a better frame of mind......I am not sure what it will take.  I think I need to sulk and get it out.  I am resigning myself to the way this will be.   I feel better already, now that I have written about it.  Seems so silly to be upset about pain when there are so many others who are worse off than I am.

Having said that there are those worse off than I am, I am still going to take advantage of all that is available to me.  I have filed for more compensation from the Army (they made my condition worse) and I filed for Social Security disability.  I know it sounds funny.....I am 34 years old and filing for Social Security.  It still bothers me a little, but the reality is that with the pain and the ligaments stretching more each day, I will never be able to work a real job again.  So, with that said, I filed and we will see what happens.  I would be nice to be able to provide for my family even though I cannot work to do it.  I saw my counselor the other day and she reminded me that I am a person with a disability and I deserve it.  (It is still taking some getting use to)

Friday I go to get my knee braces fitted along with a SI belt and shoe inserts.  The knee braces will help to keep my knees in place, the SI belt too.  The SI belt should prevent the joint and ligament from getting worse.  It is kinda like wearing a gurtle for the rest of my life.  At least it will be trimming and I will always look skinny.  The shoe inserts are to make sure that my back is supported properly.  Hopefully these things will help.

Monday I go to Occupational Therapy for arm and hand braces.  I talked to the guy while I was there yesterday and he is talking fingers, hands, wrists and elbows.  He asked how much mobility I need....I lauged and said that I have a 2 and 4 year old....what do you think?  So, he is going to try to give me some support with mobility for the day time and then braces it all for the night (I sleep with my arms all curled up).  Matt says I seem to hurt myself more at night than during the day.  I guess that is true since I have no control over what I do at night.  At least during the day I can be careful.  Good part of all of it is that it is all removable.  I like that idea.  I can use them all when I need them and not use them when I want to do something.  Example, if I want to play with the boys I can take them off to play......probably not a good example since that is when I should be using them.  We will have to see how it all works out.  Sounds like I am going to be robo-mom......LOL.

Pain Level: 4 -my SI joint is still sore from being manipulated yesterday.

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