Chronic Illness

More Waiting and Learning

As I continue to wait for a Rheumatology appointment, there are other health issues that need attention.  I have a new official diagnosis and saw another specialist this week.


I’ve received an official diagnosis of Severe Sleep Apnea.  Now, I’m waiting for the Sleep Disorder Clinic to schedule me for an appointment.  More waiting!  This will be a local appointment, so at least when I get the call, I won’t have to travel a long distance.  The appointment will include the doctor fitting me for a CPAP, and I’m eager to have this done.  I hope this treatment will help me with my energy level.  Obviously, if I have a severe case, I’m not getting good sleep or oxygen. I’ll learn from the specialists if I have Obstructive Sleep Apnea or Central Sleep Apnea.

Yesterday I met with the Gastro Specialist.  I received a referral because of my blood tests that showed signs of Celiac Disease.  I had a long and very thorough appointment, and enjoyed talking to the NP.  She told me that Celiac Disease usually shows other blood tests positive, that mine were negative.  She also reminded me that an Endoscope/Biopsy would be needed to confirm a Celiac Disease diagnosis.  The cost for this is very high and I also have a very high insurance deductible.  This is going to prevent me from doing this test.

Gluten-free Diet

Because the treatment for Celiac Disease is a Gluten-Free Diet, I’ll just go ahead and start the diet now.  I had already planned to start the Low-Histamine diet for Mast Cell Activation Disorder, and this cuts out gluten.  So, this diet works for two of my conditions and it also is anti-inflammatory.  This diet cuts out many foods, but they are foods that I can live without.  I hope that the diet will be helpful.

The Gastro Specialist also asked me about getting a colonoscopy.  I’ve never had one, for a very important reason…..anaphylaxis.  For about 20 years, every time I used any type of laxative, I would end up having a severe allergic reaction.  Many times, this would lead to me using an Epi-Pen.  These serious reactions have made me very afraid to use the Prep drink that leads to a colonoscopy.  When I brought this up to the Gastro NP, she was shocked!  She had never heard of this, but didn’t doubt that this would be a dangerous test.

Waiting for the doctor’s call

After we talked about all of my medical diseases and disorders, she said that my body was really……and then she paused.  About the only thing you can say about my body is that it is screwed up.  It’s better to laugh than cry!  Oh well, she suggested that I just do a Cologuard test, obtained through my GP.  Well, that sensitive subject has now been addressed.

It’s been a rough few weeks, with too much pain and nausea.  I’ve had a few times when I was very discouraged, because I need treatment from a rheumie and am having to wait.  As each new day comes, I am doing my best to not dwell on these negative feelings.  I know God is in control and will continue to expect good from Him.

Ps 69:16 says  “Answer me, O LORD, for Your lovingkindness is good; According to the greatness of Your compassion, turn to me,”

@2018, copyright Lisa Ehrman


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  1. Debbie P

    You are in my prayers and I hope things get better.

    1. xaoti

      Thank you so much, Debbie 🙂

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