Words from Doctors a Patient NEVER Wants to Hear…


The past couple of months have been filled with words I never really dealt with before…words and numbers on paper that PROVE something.  Up until now, my life, and diagnoses have been consumed by words like, “probably, sounds like, seems to be, could, clinically…”, with the one exception of my spinal fractures.

This has left me in a tail spin.  I was able to deal with previous diagnoses of “asthma, autonomic dysfunction, Systemic Lupus, and even Mast Cell Activation Disease”, because I KNEW what I was dealing with before I even received the diagnosis.  There was also a part of me that knew I wasn’t alone in the battle.  I had either met other people who were living with the diseases, had family members dealing with symptoms well, or had done my research well.  Also, test results aren’t exactly reliable…so there was always that question as to whether the diagnosis is REAL, although I clinically have the symptoms.  So on “feel good” days, I can kind of pretend I am alright (although I still avoid triggers and take my medications, do my meditations, and get regular sleep to keep myself feeling as well as possible for as long as possible!).

Last month, I was in excruciating pain in the middle of my back, and it was found to be yet another fracture in my thoracic spine.  Nothing to do for it, but wait for it heal, at this point.  I was given a “turtle shell” back brace to keep my spine stable.  The pressure of the brace on my skin set off a chain reaction that led to a massive flare-up.  It started just on my skin…it looked and felt like shingles, but was obviously a “mast cell rash” that turned into full-fledged systemic inflammatory reaction.  The inflammation then set off the, now monthly, sinus infection…

For the first time in a year I had to raise my prednisone dose from my “normal” 30 mg daily dose to 40 mg in order to breath after being in a “stridor” (throat spasm), for five hours.  I used every medication in my arsenal before upping my prednisone.  Thankfully, the 10 mg jump eased the inflammation just enough to get my throat to open for me to breath until I could start the antibiotics the next day.  After a full week of antibiotics and upped prednisone, I finally lowered my dose of prednisone back down to 30 mg yesterday.  I will be on antibiotics for another full course…

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That is not the scary part for me (although it may seem that way to many of you reading this)…the scariest part came from the phone call I received from my doctor yesterday.  He ran some blood work to see why I keep getting these “infections” every month (or that they never actually leave me…).  His first words to me were: “Well these results are…interesting…”, his second sentence was, “You have a hematologist, right?”.  Now there are two sentences you do NOT want to hear from your rheumatologist!

As I have been off of immune suppressant (chemotherapy) medications for one year, he feels that they SHOULD be out of system by now, although that is when these infections that just won’t leave, started.  He explained that the results do explain that, yes, I am immune suppressed, and why I keep getting sick…but he doesn’t know WHY.

Of course I did what any “spoonie” does with results…I played Dr. Google for the rest of the afternoon after making my appointment with the hematologist (who is not available for two weeks…). There are some intimidating words that go along with my numbers.  Mostly, I know I have many more vials of blood to be drawn for a firm diagnosis…and definitely other treatments to explore after those results come back.

The main emotions I am feeling right now is: UNCERTAINTY…FEAR…FRUSTATION…CONFUSION…

While I am using my strategies of distraction, meditation, and reiki to help me cope, I know that many of you can understand my feelings…yet another diagnosis…yet another set of treatments…yet another set of doctor appointments…more questions that just breed can breed more questions then answers, it seems.  Knowing is better then “hmm…interesting…see this other doctor for more tests…”. So for now, I wait…and try to do the best I can with the strategies I have to just COPE with the emotional roller-coaster.

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