March 04, 2009

Here's What's Going On

You all have been faithful readers - So I need to let you know what's going on.....

I have not been myself lately since last Thursday I have been extremely tired, blood levels wacky, SOB (shortness of breath), swelling up everywhere you name it - it's been mounting - just found out on Monday I have at least 6 autoimmune disorders, I am just fizzled. I can't concentrate so I felt I better not blog or post.

Then yesterday the PH office calls after I left 2 full detailed messages and a return phone #, she calls my home (not the # I left) and tells me not to call her anymore it isn't her problem - my PH Dr is saying I don't PH - so not to call her - I can continue with Dr. P at a different # just don't call her.

She told me on my answering machine to see a plain pulmonary dr who treats just lung problems, and that my PH Dr talked to my Neuro dr and he should treat me. (I already told her 3 times my Neuro Dr will not follow the diaphragm issue) I don't think she really listened to my messages.

My Neuro Dr. disagrees with the PH Dr and therefore will not treat or test my diaphragm. My Neuro Dr feels I need to go back to the PH Dr who deals with the lungs. I feel like a ship in the sea being tossed to and fro and it doesn't know which way to go. I have been praying and reading the scriptures I know it is all in God's hands.

I called the generic pulmonary line today, a live person told me I can't see my regular PH Dr any more, I have to start over. So she tranfers me to another #, you guessed it an answer machine - hopefully she will return my call on the # I provided. To add further to my situation I am still losing weight daily and swelling at the same time, legs, feet, neck, arms, abdomen etc... All I want is concrete answers - the days and months just go bye it has been 17 months and I am still being tossed around. I know I am a puzzle - but please find the missing pieces so I can get on with my life.

I need to have an action plan and I do not have anything. I don't feel adequate to help others on here who really need help - so I stopped posting, I don't feel qualified - so I say nothing. I might be on a lot of meds for many things but not on PH meds. So how can I help? I can't handle all that is going on in my body, all the diagnosis on top of one another have finally got to me.

I found myself crying over something so stupid - my car has to be parked in the under ground parking lot. I washed the day before the neck surgery. It's covered in dust - and people thinking they were funny - wrote - all over my car - in the dust. I got up set and started crying - its my car for pete sake! But no one should have the right to deface someone's car - let a lone draw graffiti on it - I lost it. "I can't clean my car nor will I pay someone to do it" Just leave my car alone.....

One of my wonderful social workers from the hematology clinic I go to once a week is trying very hard to find me a support group attend as well as a 1 on 1 face to face. A support group for someone who deals with multi-medical problems. You are my Pfamily I don't have my family to go to - you have been here day in and day out for me I love you dearly, your support is so greatly needed right now. Will I have to leave you if I only have a lung problem? This site is for PHA people I might not qualify. What do I do?

I did not think this neck surgery was going to be so painful - had to stop the meds because they are making me very sick. So now I sit or lay on the couch and do nothing because of the pain, I can't get comfortable.

Thanks for reading this far down. Love you all thanks for the support. Deb

P.S. I haven't been blogging or commenting so please forgive me - I am however praying for all in need. I just don't know what to say anymore, for that I'm sorry.

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