Chronic Illness, Contentment, Sjogerns Syndrome

Uncertainty In Chronic Illness

Going to the rheumatologist means lots of questions and lots of blood work.  A few days ago I saw the rheumatologist’s nurse practitioner.  She’s very thorough and asked me dozens of questions.  I was very relieved that my Plaquenil prescription was doubled, and now I’m on a full dose.


After two months of a half dose, I was anxious to increase the medication.  At half a dose, the Plaquenil hadn’t improved any of my symptoms of Sjogrens Syndrome.  The new increase should help my pain or fatigue soon.  I’ll take any improvement!

The medication recommended by my neurologist wasn’t prescribed, because the rheumatologist wants the neurologist to give it to me.  They all like to stay within their own specialty, so it makes things very difficult.  After putting in a call to the neurologist, I’m waiting to hear back from him. I guess he should have just given me the prescription.  It’s so annoying!

They took lots of blood to test just about everything.  The results came back very similar to the tests from three months ago.  I had quite a few levels that were abnormal and there was a little worsening of the values.  I also had some new abnormal readings.  Nothing had gotten better.


Most of the results showed probable inflammation, infection, auto-immune disease, or cancer.  Two of the results were consistent in Cutaneous T-Cell Lymphoma.  Since I’m being checked for this disease next month, the results made me nervous.  One of the test results was bad for the prognosis of CTCL.  I’m trying to just put that in the back of my mind, and not in the front.  I don’t need the negative thoughts.

One of the hardest things for me in chronic illness is waiting.  I’m not patient (but these diseases are making me more so).  Waiting for test results is hard because of the worrying.  Waiting for medications to work is hard because many of them take months before the benefits show up.  Waiting for doctors to call back is hard because……well, you know!

Because of new rules coming in healthcare, we’re very worried about losing our insurance.  The pre-existing condition protection could be leaving.  If this happens our finances will be in chaos.  The bills for my health care will bankrupt us, if we have to pay cash for them.  With thousands of dollars of debt in medical bills already, we’re really having to buckle down more than ever before.


With chronic illness comes uncertainty of future health and the certainty of huge expenses.  These are terrifically difficult problems to deal with.  Only with God’s grace can I find joy and peace.  It’s true that you can only live one-day-at-a-time.  I have chosen to be thankful for every day that I’m alive.

Disclaimer: I’m not a medical expert. If you have medical concerns, please consult your personal physician.

@2018, copyright Lisa Ehrman


Romwe Generic Fall & Winter


  1. The hurry up and wait game is so hard. The uncertainty of it from day to day makes life challenging.

    I hope the increase in meds helps you get some relief.

    1. xaoti

      It sounds like you’ve experienced all this first hand. I found and followed your blog, too. Thanks 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *