July 26, 2009

Getting Closer

I know it has been a long time for me to post, thank you very much for being patient with me - I have been forgetting a lot of things lately - and blogging is just one of the things I forget.

Many updates to mention ~

Shoulder - Is doing great since the surgery. I still have some range of motion issues but over all I am glad I had the repair.

Sleeping - Is going good - now that I am on the right medicine for the periodic limb movement disorder (PLMD) I can sleep - I do wake at times with the muscle cramps but at least I can go back to sleep within minutes verses hours.

Housing - Awhile back I mentioned about an 185.00 a month increase - well with much prayer I will be staying where I am - my increase will be 165.00 on top of what I already pay. My debt management co. has agreed to lower my pymts by 135.00 a month which will help pay the increase. I have help from anonymous donor for the rest.

EMG - of my muscles and Phrenic nerves to my diaphragm done on the 17th didn't come out as good as I had hoped for - but it is an answer to what might be going on with my breathing etc....

Here's what I know right now:
  • my Phrenic nerve is only working at 10%.
  • muscles to my diaphragm are damaged
  • right lung only working at 50%
  • left lung at 75%
  • compromised breathing due to lung disease - and damaged diaphragm

My Dr. is having me do major blood work to see if she can find the cause of muscle damage, she said I am headed for both muscle and lung biopsies. My breathing is becoming harder and harder, she had told me that I am dealing with a progressive disease, she is working hand and hand with my PH Dr so we can "finally" get a true diagnosis as to what is going on.

Stimulator problems - I have a NeuroStimulator implant that works on my nerves for my bladder, apparently the wires have moved and the stimulator is not working properly - so you guessed it - more surgery. I have to have the wires repositioned on Aug 11th. In the mean time I had to add yet another med to help control my symptoms.

I am now waiting for the rest of the tests to be ordered and the results are in then I should have a clear picture of what is next to come. Thanks for reading - I hope and pray I can soon blog more on a regular basis - until then have a blessed day, Deb.