Author: Rachel Alayon

It has been an expensive last couple of months.  But, I have good news.

The colonoscopy and endoscopy went well.   The pre-procedure diet made me feel worse than doing the fasting and colon cleanse prep.  I have a couple of polyps in my stomach and I had (past tense) a small one in my colon.  All biopsies were negative.  The stomach polyp is from the GERD medication.

Stomach empty test was interesting.  It made me ill because I had to go an extra 9 hours without my medication.  Good news is that my stomach empties normally.

Esophagram second time around had do with a pill test.  That came out normal also.

Echocardiogram was normal and my pulmonary function test had me returning to the functioning I had last fall.  Very good news.  Failure to recover some function would have meant a major medicine change.

Labs have been great since I changed up my vitamins once again.  Although, Endocrinologist suggested upping my iron intake a little bit more.  I have felt even better since I have.  (I take Vitamin Code Raw Iron- no constipation.)

I still have the motility test for my esophagus.  That is forth coming in the near future.

With everything done, I have almost met my $4,000 out of pocket insurance limit.  This has been an expensive year.  Thankfully I do not need to repeat for quite a while on the digestive tests unless there is a problem to address.  10 years for the colonoscopy.

As for my regurgitation when I cough a lot….That has gotten better since the acid re-flux medication was adjusted.  I have also adjusted how much I eat, when I eat and when I take my medication.  Quite the balancing act to keep me going.

I have been continuing my morning yoga and twice a week work outs in the Wellness center at work.

Let me encourage you to continue on….

• Daily meditation on God’s words
• Daily exercise (at least 4 times a week at 20+ minutes, break a mild sweat)
• Daily mindful mediation.  Be aware of yourself, your surroundings, those around you.
• Daily vitamins to supplement what you can not eat due to your conditions
• Enjoy time with your friends
• Ask questions, do your research on your conditions
• Remember that it is okay to cry and to laugh about your situation.

Some days I cough more reminding me how precious every breath of air is.  Some days I am in pain more reminding how precious every move I make is.  My goal is to make a lasting impression on those I touch in my circles of influence of strength.  It is also my goal to understand when I need to ask for help when my strength is just not enough.

I hope you have rejoiced with me in this round of good news.  May you have a wonderful day.

I don’t know about you, but I am looking forward to this holiday season.

Okay,  I am over 50 now and I need a colonoscopy.  For most people with minimal health problems, this is just an inconvenience for a few days.  For someone like me who has several medical issues, this becomes a scary ride for a whole week.  Because of this scare, instead of asking my primary for the script.  I decided to see a gastroenterologist.

Got the referral and saw the doctor this week.  Due to my history of gluten sensitivity, gastric reflux, frequent regurgitation and being over 50, he ordered the works.  So, now we are looking at the next two weeks of various forms of altered diet, fasting, colon cleansing and altered medication and vitamins.

Here is my disclaimer.  I will do all the tests the doctor recommended and report back to you on how it went.  Please understand that my view on these exams and processes may not be the same experience you will encounter.  Also, if it causes me too much pain, aggravation or fatigue, the tests will not be performed again any time soon.  Let me rephrase that, once these are done, unless I am diagnosed with some kind of severe problem, they will not be performed again for a very very very long time, if ever.

The doctor has lined up another esophogram with pill, stomach empty test, colonoscopy/endoscopy with biopsy and anesthesia, celiac blood work and manometry.  So, what are each of these ….

Esophogram- I have had twice before.  You usually fast and they take x-ray pictures as you drink some funky white stuff.  This time I am to have the pill which is filmed as my esophagus moves the pill down.

Stomach empty test –  Never had it.  Doctor is concerned that my food is sitting in my stomach too long causing the regurgitation when coughing.  This involves basic fasting, eating an egg and x-rays every hour for 4 hours to see the egg dissolve in stomach and pass to small intestine.  This was big fuss because I can’t eat bread anymore.  Finally got a hold of the lab, I can bring my pan de bono or pan de yucca.  I am assuming it is like an egg salad sandwich with some kind of tracer in it.

Endoscopy/Colonoscopy – I did not realize what a complicated process this is.  Due to my possible Celiac and colon polyps, he is having it approved with biopsy and doing both ends at the same time.  Biopsy is to cover removal of any polyps in the colon.  I also think he is going to take stomach lining biopsy also.  This is the true test for celiac.  This requires a 5 day process which includes no vitamins or herbal supplements, 3 day modified low residue diet and 1 day liquid only fast and cleansing.  By the end of the 6 days, I will probably feel like poo and want to eat an elk.

Manometry and PH balance test-  Never had this.  This involves no gastric meds for 5 days.  I don’t know if I can do this.  But, I will try once.  It is a 2 day process.  You go in one day and they measure the esophagus strength and width.  The same day they insert a small ph tracking device for 24 hours that measures the amount of acid in the esophagus.  During that 24 hours, you keep a detailed diary of every thing that passes your lips and bodily movements.   This is being done because of the GERD and problems I have with big pills due to Sjogren’s.

There it is.  I will be getting back to you as each one happens.  The stomach empty is in September.  The rest in the next couple of weeks.  I ask for your prayers of patience for me with medical staff.  I get very fatigued and easily agitated at medical offices.  All the fasting and going without my medication will cause fatigue also.  I do have several friends who will be my chauffeurs during these procedures since I will be in no condition to deal with city traffic.

I know this is going to slaughter me financially.  I am prepared the best I can be for this.  The facilities will get a payment every month for the rest of my life if need be.

Somehow, God will see me through it all and the finances will work out also.

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.