Dec 07, 2009
Wow I have a lot of updating to do! First of all I saw the Pulmonologist and I do Have ILD (Interstitial Lung Disease). There are 100's of forms so I do not know what mine is as of yet. My Pulmonologist told me its rare and he only sees 4-5 people a year come in with it so He is sending me to Iowa City to see a specialist. What REALLY ***** IS my appointment is not until Feb 9! Also my pulmonologist said I may be needing a lung biopsy! I am not so sure I am going to let me do that! Of course some people do well and there is always risks but I do not do well with anesthesia and I am on oxygen now 24/7. My over all health is not real good and I just found out I have severe sleep apnea! So in my opinion I am not a good candidate for a lung biopsy! I have heard some pretty scary things from people who have had these biopsies. We all have a choice. Right now my choice is NO Thank You! But I will see the specialist,
I also found out from the CT scans and also the lung function test that I do Not Have COPD or Asthma! (Now mind you ...I have been diagnosed with COPD and Asthma for a lot of years and have been given meds for the symptoms of COPD and Asthma! I am really wondering how a mistake this important could have been made all these years! Part of me was relieved to not have that but another part of me was sooo mad!! Thinking I have had COPD has been Very rough on me emotionally because my died of emphysema at 59 years old!
As things stand right now I have a home care provider to clean for me and assist me. The provider can come 60 hours a month. I am on Medicaid and Medicare and it pays for it! (Thank God)! I also have an aide that comes twice a week for now (But it could be daily) for an hour to assist me when I take a bath. I also have a nurse that comes twice a week to check my vitals and see where I am at on my oxygen. Upon sitting Its in the 90s with oxygen on. With it off and sitting its been in the upper 80s though the last couple times its been at low 90s!! Upon walking without oxygen It falls fast and goes down to Mid 80s lower 80s..occasionally 90-91.
I have a Cpap machine now and wear a mask over my nose when I sleep! My sleep study showed I had 90 episodes an hour thus diagnosing me with severe sleep apnea! I am Very happy to report that I am sleeping practically all night and feel very rested when I get up! I do not have that exhausted feeling any longer! WOOHOO!
My Urinary Incontinence has been a lot worse so I wear pull-ups 24/7 now! My Bowel Incontinence has been better since they put me on Iron for Anemia. I do not know the cause of the Anemia as of yet.
As for the Mennigeal/Tarlov Cysts in my sacral area and the nerve damage and bone erosion it gives me terrible pain daily! I can stand on my feet long enough to get dinner done but can barely make it to the chair when I am finished! I was scheduled to have surgery a few months back but choose not to..I did not feel well enough- I am glad I did not get the surgery now because only weeks after I canceled I ended up in the hospital for 6 days! That is when I began having oxygen levels too low and I had to come home with the oxygen. I have not been off the oxygen since. That has been since Sept.18th 2009.
I cannot tell you how much my life has changed! Most days I deal pretty well but Ive had some pretty bad depression too! I guess anyone would! I cry frequently but I always feel better after I do. I am pretty much home bound especially with the winter on its way and now the snow not to mention the swine flu scare! I have had my pneumonia,seasonal flu, and H1N1 shot! But the Pulmonologist said for me to stay out of crowds and I have! So its been hard being shut in! But better than being sick! I am only 48 years old so I am pretty young for all this!
I do believe in God and I turn to Him for strength and comfort. I have a good support system and friends and family who loves me a lot although my family they are in other states and I miss them Soo Much! I try to be thankful for what I do have! But I'd be lying if I said I did not have some really down days!
Right now I am trying to find a hobby to try and keep myself from welling on my sicknesses. I am going to start scrap booking for family and friends as gifts! I think I will enjoy that! (smiles)
Ok so there is my update for now! I really should Journal more than I do because it helps so much to unload and get it all out!