As a Sarcoidosis patient for the last 5 years,(yes its been that long), I have come to the realization that some days just don't work as well as others. Lots of factors determine how I feel from day to day. Weather fronts, temperature extremes, stress levels are most of the culprits that effect me in a negative way. I have been very blessed during this journey to have many people praying for me and my faith in Jesus Christ has seen me through to date. He IS Jehovah Rapha:The Lord who heals, to me and I bless His name daily!!! (Exodus 15:25)
Some of you know that I have been taking an experimental medication which helps keep my lungs more pliable and enables me to breath, and it makes me feel so much better. This year I had to stop receiving this treatment due to insurance issues. This medication is VERY expensive to the tune of around $1000.00 per week. It is considered "life sustaining" in my specific situation. Due to insurance changes, it is no longer covered. February of this year was my last treatment and I was told that I would start slowing loosing the battle I have been winning if I stopped the treatments. My breathing capacities were all normal in March and I was for the first time in "remission" since I began my fight.
I have been feeling a tad worse by the day, so I went today to see my Pulmonologist and get her advice and my breathing checked. Sometimes I think this is all in my head! Well, its not! Since March of this year my numbers have plummeted from the mid to high 80 range (and a few in the 90's) to now in the mid to low 60 range. In the words of my doctor...NOT GOOD! One test I scored so low in that it didn't even register.
I have the Georgia insurance commissioner and our wonderful Governor working to help resolve this delicate matter. Hopefully with any luck and lots of prayers, we can get something resolved and I can restart my medication soon. If not, I pray that I will be found gracious and glorifying my Lord till the end. I wanted to thank everyone for your continued prayers and support as I strive to stay strong through my journey. I am daily reminded of how precious life and breath are and just how much my heavenly Father loves me.
Hey Deb! So glad to see you are blogging! Didn't like to hear your #'s were so low.... I think of you often and wonder how you are doing.. apparently, not good. No oxygen yet, I hope! I keep you in my prayers always. He knows you and is watching over you... of course, you already know that.. I just wanted to remind me of that, too! You are the best! Love you!
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