This past Sunday, a friend offered to take me to church. I made arrangements and prayed I would have the strength. The weekend came and I discovered I had no new oxygen tanks. This never happened before. All 16 had been used and I would need tanks to make my visit to Bethany Church. Oxygen is only delivered on weekdays, and this was the first time I ever ran out without noticing. . We like to call when I get down to a few left. I have a compressor that delivers unlimited oxygen in my home, but to leave the home I need to use tanks. In the beginning I used a small portable compressor that I could charge and take with me, but that was when I didn’t need full flow. The portables deliver O2 when you sniff or breathe in/sniff, where as the tanks are flow. I may be able to return to that, if my lung capacity gets stronger. I also use Bi-pap, which is a home mechanical ventilation system that helps my lungs and assists with breathing.
So because I didn’t have any new tanks, I did not want to be limited to home so my friend, Chris and I tested each tank on Saturday for some remaining O2 in it. We found a few but there was no guarantee they would last. I decided to continue with my plans to attend the worship service. My attendant and I were picked up and we were able to get situated for the service. We even found a bench to keep the extra tanks under. Every thing went so smoothly and I had enough 02. I know in my heart that God gave me the oxygen coverage I needed to manage...a miracle moment.
My family enjoyed a delicious “southern boil” meal from the church have was available for pick up following the service. Before I knew it, we were blessed and headed home. They were able to deliver new tanks on Monday..
I am able to tolerate my pain for pockets of time and certain distraction have been a helpful tool, but pain and new painful symptoms seem to unfold .
Yesterday I had an appointment with a new pain specialist and he was easy to talk to. When I shared my concerns, he told me he too would recommended going to a major hospital and seeing at least one doctor who treats sarcoidosis, preferable a neurologist or rheumatologist. He said, It’s rare to come across cases like this. I know he doesn’t know me well yet, but I’ve been hearing this message to go elsewhere. He also said he doesn’t want to try anything in addition now, because I am experiencing too many central nervous system side effects. He can’t do anything to my spine because of neuro findings. My gut says I am having these neurological findings because they are aggravated by one of my medications.
However, I’m really going to pray for answers to whether I continue to wait, and then move ahead with treatment out of area, only when I feel led to do so..But I don’t want to put myself or others through that.
For now I’m content being closer to home, outpatient, just appreciating the season of life I am in.
I’m so tired of all the testing and probbing. My abdominal pain and neuro findings are my two prayer requests.
I began getting information about a change in the way I get my healthcare. It’s not very clear yet, but they are combining my inhome care with healthcare starting January. I am hoping I can still work with the doctors I have now. The program is for people receiving any type of nursing care or long term care. My age has something to do with it too. Pray that this is not disruptive to my care or others.
I have been up a lot during the night sick, coughing, spasming with pain, and nausea. I am hoping to see it pass. I’m not going to attempt anything but rest this morning..