Feels Like a Human Freak Show

  I just got home from the physical therapist.  It is really crazy to go somewhere for help for EDS and have people look at you like a FREAK.  The first therapist kept purposely hyper flexing all my joints because he had never seen it before.  Then they paraded each of the other therapist in and kept bending and twisting so everyone could see it.  OUCH.  Guess they know nothing about EDS.  First rule, hyper flex joints as little as possible because it makes pain worse and stretches ligaments even further.
  So, after being the dog and pony show for the afternoon, I was told they basically don't know how to treat me. So, I had to suggest pool therapy to build muscle around joints, but not put the pressure on joints. They did mention bracing joints....did tell me that the knee brace the VA PT gave me was totally wrong and was doing more damage than good.  The PT will call the Dr from the VA this week and get back to me next about a plan of action.   DAMN.  I am sorry, but that is a nice word for me right now.  I want to use every word in the book right now.
  How can there be a syndrome and no one know how to treat it?  I can understand that there is no cure, but at least some sort of treatment would be nice.  I am 34 yrs old and I am not going to be in a wheel chair in 15 years when my youngest graduates from high school.  If you know of any way to prevent further degradation of the ligaments, I would really appreciate it.  I am going to deal with this and try to bring it to the attention of others, this is probably under diagnosed.   How do I get the word out?  The EDNF.org sucks.  They do not give enough information.

PISSED OFF today, but hopefully tomorrow will be better.... I have the musculoskeletal  doctor.  Maybe that person will know more about EDS.  Doubtful, it is the VA after all.  But, if I keep telling the Dr what they need to know, I might just get something done.

Pain Level:  5-6 All over, thanks to the physical therapist.

Slowly getting Better

  It is a new week and I am trying to make it around.  I actually left the house and took Max to preschool.  He was so happy to go, he hates to miss it.  I also made it to Walmart, but I am paying for it now.
  I have two significant appointments this week.  One, physical/pool therapy on Wednesday and an appt at muscularskelatal clinic.
  I have to say that I am just too tired to write much right now.  Is that normal?  Is my body using the energy to hold itself together?  I am just getting more and more tired everyday.

Life is changing

  First, I must tell you that we have decided not to move to Holyoke for awhile.  Not only are we trying to save money, but we have decided that it would be better for me to stay where I can have easy access to medical care.  Would not want to move and have stop therapy or have to drive 2 hours to do it. So, we are going to stay in the Colorado Springs area, but seriously considering selling the house and moving up north.  Maybe we will buy a house up there or move into an apartment complex where there is a pool and a hot tub....both of those would be beneficial to me and aliments.
  Second, I have not been on here for several days.  The reason is I slipped on a piece of paper on Thursday AM and popped my knee cap out.  It easily went back in, but the swelling and pain was awful.  Matt had to come home from work on Thursday and stay home Friday.  (Have I told you how wonderful he is?)  I could not put any pressure on it for a couple of days.  Today Matt had to go and ref wrestling today, so I am on my own with the kids.  I have put my knee brace on to keep it stable and have been using my crutches.  I am able to take care of my kiddos with help from them.  Max (4 yrs) has been a tremendous help.  I hobble into the kitchen and Max gets things and carries them for me.  I am hoping to go to my friend Joanna's for her clothes give away.  She has so many cute things....and she is giving them away.  Not sure why, but I certainly will be donating to her donation box.  She is not expecting us to pay for things, but she is in a tight spot.  So, I will be helping her.
  I have an appointment to go to therapy on Wednesday next week.  I cannot believe that it happened so fast.  The VA usually takes forever to get things done, but the day after my Dr. put in the request the sports and spine clinic called.  I am going to get my evaluation and hopefully get started on therapy by next Friday.
  Speaking of next weekend, I am going to get some alone time.  My husband will be taking our boys out to Granna and Grandpa's.   It is nice to have some time alone every once in awhile.  I also have my first really gathering for Close To My Heart.  Jenny is hosting it and she is such an awesome hostess.  She sent 30 evites out already.  Yeah.  Have a bunch of cards to get ready.  Guess that is what I will do Saturday without the kids or interruptions.

Pain Level: 6-7  left knee

Forgot to tell you

  My doctor called from the VA yesterday.  She had some awesome news.  I was very afraid that I was going to end up with a government therapist that knew nothing about EDS, but that is not my fate.  Dr. Rose was able to out source my therapy to a local therapist that specializes in EDS and can do pool therapy.  Hooray.  Who would have guest it?  I am so excited. It will most likely take a couple of weeks to actually get started, but at least I get to do it.
  I should also be getting my cane this week.  Not so excited about this, but at least I will have it  when needed.  I have decided to get my shiny little jewels and my hot glue gun.  I am going to make it mine.

Pain Level: 3 - right hip

Update on my current issues

  I am sorry it has been a couple of days since I posted anything here.  I have been lying on the couch in pain most of the time.   My husband has been fabulous and he stayed home yesterday to take care of the kids.
  My hip still hurts, but not as bad as it has the last couple of days.  The muscles around it are still swollen and painful.  I believe it has corrected itself and is back in the proper position.  The coldness has gone away.  Amy told me that is a really bad sign and if I have it again, I should go see someone.  I will have to be more aware of that in the future. I did leave the house today and run around town a little, but I made sure to use my handicap sticker so I did not have walk as far.  At least every place I went, my business was right inside the door and the bank was even drive up.  Funny how I now have to think about and plan these things before going out.


  I am still in good spirits, despite the pain.  I have almost made my first month sales goal of $300.  I am so close that if I get one more order I might just make it.  So, if you are interested in helping me out....go to......
charlee.myctmh.com.  You can order directly from the site and check out there too.  I am also thrilled to say my dear friend Jenny is going to host a card workshop in a couple of weeks.  I am so pumped about this new opportunity to share my love of card making and scrapbooking.

Hugs and Kisses to all, along with prayers for all of those affected by EDS.

CRAP that hurt

  I had a great day.....I did my first stamp club and it was awesome.  The pages we did were great....I am so proud of myself.  My friends had a good time and I made a few bucks.  Yeah.

  Now to the bad part. I closed the gate to the stairs when everyone left.  So, on my way back up from cleaning up, I stepped over the gate.  My hip popped in 3 different spots.  Holy Crap that hurt.  I am sure I dislocated it and I not sure if it is back in place properly.  I am still in a bit of pain...took 2 pain pills, but it still feels cold.  It is really a weird sensation.

  That is how it goes around here.

Hello

  I woke up essentially pain free this morning.  Unfortunately, I woke up with a headache.  I think those are the worst kind....who wakes up with a headache?
  Nothing planned today.