So….I didn’t really think that the CPAP was doing anything. But, I have started to feel a little bit more energetic in the mornings. I still run out of gas by lunch, but that is to be expected. The sleep specialist changed my mask and I am much more comfortable and no longer throwing up every night.
Now, for the real news. I spent the last four weeks doing labs and tests for my lung function. The news…..well…..not very good. The results showed a drop anywhere from 10 to 20 points in my lung function and lung volume. I also fell in my CO2 exchange. Hmmmm.
The doctor and I had a talk again about lung transplant. I told him no again. There just isn’t enough studies regarding lung transplants for those with several auto immune disorders. I also told him that I did not think a new pair of lungs would be Lupus resistant. He agreed that there would be a possibility of one of my diagnoses to attack the new lungs. So we reviewed my eating, exercise and work functions.
I did have some news for him. One, I was in quite a bit of pain today for the visit which caught him off guard. Usually when I see him I am doing fine.
Then I told him that I am having problems multi-tasking for two jobs at work. It had not been an issue in the past. (I have been helping to cover another position during another employee’s absence.) He said this could be the auto immune diseases and the medication. He agreed that I needed to be just me at work. I need to focus on just my job. I then asked him if my additional mucus coughing issues and mental fog could be from doing two jobs. He said it was more likely due to stress from doing two jobs. He suggested that my next run of labs be during the summer when I am not working to see if I return to the previous results we had from last year.
He also suggested another esophagram fluoroscopy to review my GERD since my coughing fits have increased from 1-2 a day to now 3-5 with vomiting daily. He was willing to prescribe a strong prescription cough syrup, but wanted to make sure that the coughing is not due to gastric issues. So, I am booked up for the summer and return to him in the fall.
He also discussed with me about the Retuxin drip. I told him that I didn’t think the insurance would cover it or cover it continuously. I also told him that I didn’t want to commit to something that expensive (approximately $35,000 per drip) if it wasn’t going to help my respiratory issues. I already know it will help my arthritis.
What is the bottom line?
- I am to do only my job. Someone else will have to pitch in when the other secretaries are absent. Besides, no one covers for me. (Yes, I am backing out of being a team player.)
- I will continue doing yoga. (Dr. loves the idea of me doing it 4-5 times a week. I also like the fact that it helps with the pain.)
- I will continue to volunteer at the food pantry. It takes my eyes off my woes. It has also been stated in various studies that volunteering helps keep depression away. (Everdayhealth, Sjogren’s, Rheumatoid Arthritis and Lupus websites.)
- I will be doing all my labs and lung function tests in the morning and during time off to remove the stress factor. (I did my lung function after work after covering for another person. Stress level was high that day at work. The Dr. did state that there is a differential between morning and afternoon lung function, but that does not explain my variance from last fall.)
- Continue to remind myself that other people’s situations are not my journey. I have to walk my journey now.
- Remember to ask for help.
- I am to continue self-care and make time for it. During the last two weeks, I let myself get behind in taking care of me.
- Remember that whether I have a lung transplant or not, God has me in His hands. He will receive me in His timing, not the doctor’s.
Closing thought. Think about sea glass. Broken sharp glass pieces are tumbled in the surf until they are round, smooth and so pretty that people search avidly for them. God does the same thing with us. He takes our broken bodies and souls making them a beautiful thing to behold after tumbling us through the tribulations of life.