10 February 2010

Long week

I have not posted lately and I feel bad about it.  Unfortunately for me, we have been in the hospital with Ben (my 2 yr old) for the last three days.  We will be here for several more.  He has RSV and it is taking forever to get him back to breathing well.
It has been several long nights and it is going to be several more.  My poor little baby.  I will post more tomorrow.  He is finally sleeping for the night and I am hoping to get some myself.

04 February 2010


  So, I went to physical therapy this morning.  Wow, I am so not normal.  I found out that I have been relying on muscles that should not be engaged all the time.  Debbie worked hard with me to start engaging my core muscles properly.  All the muscles that I am suppose to use are not used at all.  It was amazing how weak those muscles are.  It was also amazing how much pain that can cause.  I can barely do anything.  She gave me less than basics.  I do not even have the muscle to do basic pilates.  I cannot believe it.  She was very careful not to hurt my SI joint too much, but reality is that you cannot work the muscle to fix the problem without aggravating it a bit.  I am super sore today and absolutely exhausted.  I slept for 2 hours while the kids did today.  My SI joint, my knee, and my right shoulder are sore.  Debbie gave me some exercises to do every day.  5 exercises 5 reps once each day.  Doing them properly, that is all my muscles can do without serious fatiguing the muscle.  I am going to be going to the clinic 2 times a week for several weeks.  I am hoping that might be enough to get me started on a better way of life.
  I am pleased that Debbie knows what she is doing.  We did our work out and then she was able to manipulate my SI joint to take some of the pressure off of it.    Amazing what she can do.  She was full of information and helpful tips.  She even gave me a workout ball to get the kids sitting on to build their core muscles to keep them from having problems developing.
  I cannot say enough about how things went.  I am pleased, but cautious.  I hurt, but in a good way, I think.  I will know tomorrow - depending on how I sleep and how things feel.
  I feel like I should write more...maybe it is because I have not met my word (speaking) quota for the day.  LOL.
  I am very tired and sore...once the kids go down I am going to take a pain killer and rest. Matt is out at a Drupal computer meeting tonight.  Looking for some good job contacts.  It is a time for wait and see.

Thinking about changing my diet too, any ideas on what might be a good diet to help inflammation?  Just a generally healthy diet would be good too.

Pain level - 6-7 muscles are sore and joints ache.

03 February 2010

Lots, Lots and Lots

  So much has happened since I last posted.  Still not sure the PT office knows what they are doing.  I am scheduled for pool therapy next week and the week after.  I start actually therapy tomorrow AM at 730.  I am really nervous, almost scared.  My knee is hurting a bit tonight.  Really hope they do not hurt me even more.  I am praying that they have a clue and don't break something.  Can I say again that I am scared?  I am.
  I did see a physiotherapist last week.  She is the first person I have met who actually seems to know what she is talking about, which is good and bad.  She gave me lots of information, but scared me all the same.  Nothing is positive looking, but she did not count me out either.  I cannot stop what is happening to me.  I will always have loose ligaments, but I can work on my muscles.  It looks like once the muscles in my body are retrained, I won't be relying on my ligaments so much.  The hope is that I will be able to keep myself together and moving for a long time to come.  Basically, I will be retraining all the muscles in my body.  It will be lots of work. My muscles have been working in the wrong way because they have been working improperly.   It sounds like a painful proposition and long term work.  But, I am really hoping that this might work.   I know that I will not be running again or doing the iron man any time in the future, but I can still be active.  I am sure that there will be other sports that are going to be out of the question, but I am looking forward to finding out which ones I can still do.
  I am finding it harder and harder to deal with this on my own.  My husband does the best he can, but does not understand daily pain.  My family is all trying to be there, but really....no one can understand until they have been there.  My poor kiddos think mommy is super fragile and are terrified they might hurt me.  We do play some, but any time I flinch or squirm, they jump off and say they are sorry.  It is heart breaking.   I need to get my head around this and try to make it normal, instead of letting it ruin my life.   I am really hoping that therapy will help.  I am going to see my psych people at the end of the month too.
  I am trying to find positive in all of this.  I am going to be filing a claim with the Army for the damage they did to my joints, even further than what they would have been.  Good news is that when the physiotherapist saw me last week and ordered some things in the computer----there was a code for Ehlers-Danlos.  That means that they have the code and can and will compensate me for it.
  I should also be getting braces for many joints soon.  I know that my knees will be braced first and then possibly my hands.  I am getting an SI joint belt, it is suppose to help me keep that joint in place so I can retrain the ones around it.  I am also going to see an occupational therapist because I am slowing using strength in it.  I have asked my physiotherapist about it and she told me that it is basically just getting worn out.  I have stretched out most of the ligaments and will not be able to get that strength back.  Sucks, but hopefully they will be able to help me figure out how to use what I have and keep it from getting worse.

We will have to wait and see.....I should be used to it having been in the military, "Hurry up and wait."

Pain Level - 3 right knee

Keep your fingers crossed that it is not much worse tomorrow.