Month: March 2019

I guess that my doctor visit from last week still has my brain spinning.  So, here is what I have to say about nail polish, self-care and self-aware.

Having multiple auto immune disorders can be scary.  All the information you read talks about self-care and being self-aware.  But, are they the same, different or is there a grey line in between.

Earlier this year, I took a youth mental health training that is being required of all educational employees.  Working in ESE I thought I knew everything. Wrong.  I did learn a lot.  What was interesting when reviewing the material afterwards that at the end of each section was a set of questions about self-care and being aware of your personal feelings.

I have started to get newsletters and e-newletters from various auto immune organizations such as Everyday Health, Sjogren’s and most recently Speaking of Lupus by GSK (Glaxo Smith Kline).   Each one seems to always delve into talking some point about being self-aware and self-care.  So,  how does nail polish fit into this?

Last year I was introduced to mood polish.  The one that is one color when your fingers/toes are hot and a strong darker color when they are cold.  I have started using this type of polish more frequently.  Why?  If my nails are the darker color, I need to stop and be self-aware as to whether I am cold, or are my extremities suffering due to lack of oxygen making them seem cold.  This form of self-care of pedicures and manicures once a month will help me in keeping track of my breathing.

In fact, the technician two weeks ago when I did the walking test noticed that my toe nails had changed from light green to a dark turquoise before the oxygen reader alerted that I had dropped below 89.  As soon as he had me sit down and use oxygen, they warmed up and returned to green.  This went on again while testing to see what level of oxygen I need when walking.  It was kind of cool.  Yes, I wore comfortable sandals to walk in.

Hey, I can be fashionable and still be self-aware of my body. 

The free lupus kit from GSK is cool.  It has nice activities to help you practice explaining lupus (or sjogrens or RA, etc.) to those around you.  Order one, you will be getting emails and small workbooks in the mail.  I find the tools and activities useful and can be used for any autoimmune disorder.  Here is the link.   I hope you like it as much as I do.

https://www.usinlupus.com/getyourfreesymptomskit.html

I was sharing with a close friend yesterday the news from the doctor.  She asked me about going out on disability.  I told her not yet.  I can still work.  I just can’t do two jobs anymore.  Why would I want to stay at home all the time when God has things for me do out in the world?  It was just another reminder that God is not done with me yet.

So, as the song goes, “Jesus take the wheel”.

 

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.