I wonder if most people who suffer from chronic autoimmune diseases find that the time leading up to diagnosis is the most difficult to bear. The search for answers can be long and winding, difficult to navigate even for those with faith.
Today I picked up the paper copy of my radiology results, the same exam which first alerted me to the possibility that I might be suffering with a rheumatic disease.
The paper says -
"Deglutition was normal for all substances and there was no obstruction in the neck and normal peristalsis in the upper esophagus. The lower two-thirds of the esophagus showed almost no peristaltic activity and the esophagus did not empty even in the upright position. There was marked stasis and the patient felt symptomatic. There was no esophageal stricture or evidence for achalasia. The esophagus was not dilated.
Impression: 1. Normal swallowing exam. 2. Primary motility disorder consistent with collagen vascular disease in this patient who has other autoimmune involvement. Consider esophageal manometry for baseline study."
So there you have it. I should be glad it isn't cancer, and I am. I truly am! That is a huge blessing by itself.
That said, I sure wish I could swallow solid food. It is starting to settle in that this may well be permanent.
There has been some good news today though. First, I met with a pulmonologist who said my lungs are currently at 100%, based on a breath test and blood oxygen saturation levels. So for now, no interstitial lung disease.
Got my rheumatoid factor test back. It was also normal, much like the ANA and Scl-anti-70 tests.
Nothing is really adding up just yet. I am sure we'll know a whole lot more after we meet with the esophageal specialist next week. They're going to run a bunch of esophagus specific tests and that should either confirm or refute the radiology report.
The good news is that I'll soon find out about Lyme involvement (if there is any) and if I do have a connective tissue disease, I'm meeting with one of the best AP rheumatologists in the world in two weeks who can get me started with treatment. I have every reason to be extremely hopeful.
That said, today I have been tired and very sad. Maybe it's just part of the process. I'm in my own dark night of the soul, trying so hard to move forward.
My five year old son wrote me a note today with his own unique spelling. So beautiful it made me cry. He wrote "Nies Mome, Frrr Mamme, Wel Mome, Lov (His name, His brother's name)". Translation: Nice mommy, for mommy, well mommy, Love - (my sons)". I pray to God and all things holy that I will be there for him and my other children all through their growing years, to teach them and guide them into adulthood. That is really all I care about. Solid food means nothing compared with that.
Whomever you are, reading this post - I hope this finds you well and healing. If you are having a hard day, I hope that you will feel less alone. We are all connected, and I believe that when even one person heals we all heal to some degree.
Much love to you.