Category: Health

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.

I have spent the last six weeks trying to adjust to the cpap machine.  The last two weeks I started experiencing unusual and serious problems.  Every night about an hour after placing the mask on I would experience a coughing event so bad that I would end up in the bathroom throwing up.  So, after about 10 nights of this, I emailed the doctor.  He asked me to come in the very next day.

He listened to all my concerns, answered all my questions and then we discussed what was happening to my lungs.  He made several adjustments to the machine, helped me refit my mask, set some sleep goals and tried fitting a different mask.  He said that since I have an  appointment in two weeks, he will make some further adjustments at that point.

The doctor said that with the sensitive nature of my lungs, he will be making adjustments each season as the humidity changes, temperature changes and as my decline continues.  So, I guess that means I will be seeing him about every 2-3 months to make new adjustments to keep me breathing and my heart beating.  That is more money honey.

My husband has been happy to announce each morning for the last three nights that I have not had any coughing events.  I even had the mask on for almost 7 hours last night.

I sometimes wonder if all this is worth it.  Somedays I am scared, especially when I cough a lot.  Sometimes I wonder if I should file for disability.  Then I remember that God has not called me home yet.  He is asking for me to be my best as long as possible.  If I do not have enough money for the medical expenses, He will provide.  He always has.

I constantly remind myself that I am loved by God and I am precious, even if my body doesn’t always follow my rules.

I am the proud owner of a CPAP and the infamous SoClean.

I went to the supplier since getting a tech to come to me would not have happened until after the beginning of January.  What does this have to do with the title?

At the training, I was informed that everything will go through a 3rd party biller.  The insurance will cover up 70% after the deductible is met.  The SoClean is not covered at all.  (A really close friend bought that for me for Christmas and Birthday).  That is about $600 left to meet my deductible for this year.  January being around the corner, that means I start again at 0.   Don’t forget that there are parts that have to be purchased every 3-6 months to the tune of $300 a pop.  Going through a 3rd party biller will mean that they will jack up the price by 3 so that they can get my deductible up front and in their pocket before I get any other procedures.  Then I pay 30% after that.    Shortened, due to this new equipment, I need to make sure that I have $1200 minimum at the beginning of the year to cover the upkeep costs.  I am not even sure this therapy will help.

I read an article in AARP about a person who refused to do the sleep study.  When asked why…She stated that dying in her sleep sounded very peaceful and that all the upkeep to stay alive causes extra stress that is not necessary.  I am beginning to see her point.

My first night with CPAP, I could not sleep.  It felt like I was trying to breathe while swimming underwater.  So, I just focused on keeping my breathing steady until the alarm went off.  But, during that time, I had three anxiety attacks over the cost of the extras that were not disclosed before the equipment was ordered.  Not everyone has the money for this.  My second night I actually slept since I was exhausted.   Still felt like I was breathing while underwater.

So far, MyAir results show that I do not have sleep apnea.  Wow, no surprise there.  I argued the results of my sleep lab with my doctor because the test was not a “true” picture of how I sleep.  I sleep on my side with a 30 degree wedge.  Of course I have sleep apnea on my back and flat.  I personally think this is medical conspiracy to get people sucked into this situation.  After some more research lately, most people do have apnea events about 4 times a night.  My test result was just a little above that.

I am willing to give this a bash while I am getting my oxygen concentrator repaired anyway.  My problem is, what if I didn’t really need this?  Now I am stuck with a product that needs a script to get expensive supplies and I am now committed to three months of paying for it since it is unreturnable.  Yes, I can sell it on EBAY.  But, is it really worth the bother.  What about my friend who wanted to make sure I had the SoClean.  She is now out the money also.

I know I may be over reacting due to the stress of the holidays and dealing with another problem and medical equipment with the complications of having a flare of my symptoms.  It might just be some paranoid delusion.  I will say that if I had known the cost of the upkeep of the equipment, I would have told him NO.

I will keep you informed.  I have only had the equipment for three days.  I did pray all the way home to God after I picked up the equipment that He would have to provide the money for this equipment and supplies.  Ultimately, He will.  He always has.

Now, my next endeavor is to contact the president of school that oversees the doctors I see.  I want to know if there are professional developments and/or curriculum that includes informing the doctors of health care costs and the stress it puts patients under.

I see that I need to do more research when a doctor suggests a procedure or equipment before accepting those financial burdens.  I thought I was prepared for this.  I guess I was not mentally ready and having it happen during Christmas was even a poorer decision.

In the mean time.  Merry Christmas and Happy New Year from Daisy and I.

I just wanted to share an observation this week.

Have you seen the ad for Dupixent?  Oh My Goodness!!  I have never been so excited for a pharmaceutical ad in my life!  First I love the fact that it shows how I feel on most days.  The ivy climing up the feet, the ants on the hands and sweaters and blankets looking like catci.  About the only thing they could have added was the bugs landing on arms and face.  Either way, I called them and told them how pleased I was with the ad.  If you haven’t seen it, please take a minute and find it on Google.   I am going to talk to my doctor about this medication at my next visit.  It is to treat underlying causes of dermatitus due to auto immune disorders.  Unfortunately, I take other medications that would cause problems with it.  I just find it exciting to see new medications that are finally addressing how some of us really feel.

Why did I bring this up?

Well, Happy Thanksgiving, Merry Christmas, Happy Holidays….etc.  This is where life hits fast forward until we get past Valentines.  I have seen it driving and have felt it on my skin.  Honestly, my pain has been pretty good.  It is the forever buggy feelings that annoy me when I am stressed.  I spent most of this week feeling like I had flies crawling on my face, ants walking on my arms and mosquitos on my legs.  Tell the doctor?  I have in the past and I am usually told to stop stressing, do more yoga, drink more water and if I want, I can temporarily increase my steroid amount until the stressors pass.  I don’t know about you, but the first three are “easier said than done” and the last one is just “bloat city” that then takes another 3 months to get the water weight off.  So, I just deal with it.  If it gets too bad, I reach for the OTC hydrocortisone cream.

What is causing this?  Stress.  Extra traffic when traveling to basic destinations.  Trying to figure out gifts for hard to buy for people.  Having to explain a 100 times why I can’t do evening events anymore.  Then trying to deal with my family quirks and illnesses.  Also, the fact that my body is just not reacting the way I want it to.

I have been doing my yoga every morning.  I am eating anti-flammatory and continue to drink plenty of fluids.  Like every flare, this too will pass.  I see the doctor in January in case it does not pass.

As for which auto immune is acting up, I am going to guess that sjogrens or the the fibromyalgia.

I ended April with the rheumatologist and started May with the pulmonologist.  So, here is what was said…

I have unspecified/metabolic arthritis and Fibromyalgia in addition to my other issues.  RA doctor wants to start me on retuxin drip, pulmonologist does not.  So, in order to decide, a few tests have been ordered to see where my lungs and oxygen processing stand.  That was the bad news.

Good news…my lung capacity has gone up again and my diffusion rate has gotten better also.  The pulmonologist doesn’t want to add any medications since it seems  I am still recovering some lung function.  My echocardiogram came back that my heart is normal and pulmonary pressure is normal.  (Three cheers for that.)  (Now I just have to fight with the insurance company to get them to cover it.)

So, where do I go from here.  Well……I have saved up some money this year to cover the out-of-pocket cost on a sleep study.   So, that has been ordered.  Unfortunately I can’t get into see the sleep specialist for a primary physical to do it until September 4th.  Also at CT has been requested again.  Let’s see if the insurance will allow it this time.  I warned the doctor that he would have to fight with the insurance to get it approved.  It is scheduled in October before I go back to see the pulmonologist.  I am hoping that God will allow me to get the sleep study before I return also.

In the mean time, I will use the oxygen at night if needed.  It seems that I may not need it anymore.  But, the sleep study will confirm that.

I continue with the reflexology massages.  I understand now where the fibromyalgia fits in.  Everywhere the masseuse touched, I hurt.  I still left feeling better than I did going in.  I have moved this treatment up to once a month.  Honestly, if I could afford it, I would go every week.

I continue with my self-care of a pedicure and manicure once a month.  I have additionally started a weight program by Omada.  I am a little over a week into it.  It includes several supports, apps and a website that provides tracking and encouragement.  I will get back to you on its success.  This is covered by the insurance supposedly.  I continue with morning yoga during the week.  (Hey, I can almost put my heel on the floor in downward dog!)

I am continuing to work, even though some days the pain has started to interfere.  I want to stay active and be involved outside of my four walls.  Volunteering Sundays at the food pantry takes my eyes off of my problems and allows me to share my perseverance.

Overall, I am pleased on one hand and dismayed on another.  I need to do some more research on retuxin before I add that to my myriad of medications.

In the mean time, I know God has me firmly in his hands.  There is a reason for this, even if I am only to be a role model to you.