Closing in…

Today was pretty productive.  I saw Dr. Joseph today who didn’t have a lot of answers for me which was kinda upsetting.  He says the new medication may take time to work and he is deferring to the University of WA specialists for now.  He recommends that I stay on my oxygen and is supportive of me no longer working.  I am coming to terms with this more and more.  After a long talk with my husband, we both think this will be the best.  I finished what I could of my social security application today as well as the paperwork for medical retirement through work.  I think I will work until the next pay period and then be done.  As sad as this is, I need to do what is right for my health and family.  My son is beyond thrilled that I can spend more time at home with him and so am I!  I figure, I will keep my SW licensure up to date though, so at some point if I get better I can return to work!

After sitting at the computer for three hours completing paper work, I am done, put a fork in me!  I am looking forward to the holidays with my friends and family!  Merry Christmas everyone!

Beyond words

I worked three days in a row and I have no words to explain the level of exhaustion I feel. First two days were great. I went to work was productive was able to catch up with work and friends.  Maybe it’s the cold air making it harder to breathe? Maybe it’s not and it’s just my disease progressing.  Either way, I’m not sure I can go back tomorrow. I’ve been on my new medication almost a month now.  I don’t feel any different yet.  Good thing is I’m not experiencing any negative side effects either.  

I saw a new cardiologist last week and had an echo done last Friday.  I will meet with my PH MD on Monday and we will reassess where I’m at and likely schedule another heart cath to measure my pulmonary artery pressures again.  

My life is trying to balance family, doctors appointments and working when I can.  Im also up to my eyeballs in paperwork trying to fill out paperwork for social security and medical retirement for the VA, while trying to smile, get ready for the holidays, etc. Needless to say I’m extremely overwhelmed, cranky and just want to hibernate and wake up with a new set of lungs!!  

I’m bitching a lot I know! So I will go to bed and close saying I’m grateful to my friends and family who are helping support me through this! I appreciate the hugs, check ins, meals and offers of help and hope!