In June of 2011, I had been living for about five years with a mysterious illness of some sort, one that mimicked auto-immune disorders, but no bloodwork could find a cause. I lived with chronic pain, inflammation, swelling of the hands and feet and face, ankles, legs and abdomen from time to time. It would come and go. I’d have good days and bad days; at first, more good days than bad ones, but as time progressed, that flip-flipped to more bad ones than good ones.
Then one day, my entire life changed. A physician’s assistant I had been seeing suggested that the rash on the inside palms of my hands, along with muscle weakness, aches and pains, and the purple on my face and around my eyes might be caused by something called Dermatomyositis (DM). She couldn’t test me for it, because I had been taking low-dose steroids, which would have invalidated the test. Instead, she put me on the prescribed treatment for DM–high dose steroids. I was taking 60mg of Prednisone daily.
Wow, what a difference this made in my life! I was walking again, standing up in the shower, cooking, cleaning, going on rides with my family and doing things, and not needing the wheelchair for my scoliosis and muscle weakness. It was amazing. We even took a trip to a bed and breakfast in July of 2011, in which I took the family dog down by the river and went walking and enjoying myself.
Three days later, after we returned home from that trip, I was bed bound. Unable to breathe, sats dropping, pain everywhere, disorientation and more. I would get slightly better then get worse again. Chest x-rays revealed nothing. Doctor and PA had no idea why my sats were dropping, why my feet started swelling up like sloshy water balloons, why my abdomen was distended, and I could no longer eat or drink without being uncomfortable. Without insurance, going to specialists was difficult for me (many won’t even schedule an appointment if you don’t have insurance–seriously!) and expensive (if they would schedule the appointment at all!). We tried to see the right people, and for a couple of months, everything moved along, but I was miserable.
Then we saw a cardiologist. He said, “You have pulmonary hypertension.”
What’s that? I had never heard of it. I knew hypertension was high blood pressure, but what the heck? My blood pressure, my entire life, had always been super low. I couldn’t have high blood pressure. No, he said, “You have pulmonary arterial hypertension. That is, high blood pressure in the artery leading from the heart to the lungs. We don’t know why some people get it, but you can exercise. You can still exercise.”
I was like, “I can’t even breathe. How am I supposed to exercise?”
That’s when I was prescribed oxygen. At first five liters per minute, and what a difference that made. It didn’t fix anything, but it sure made things easier. My eyes quit watering, my head cleared, my breathing recovered faster, but I was still very, very sick.
After several more doctor’s appointments, referrals to pulmonary specialists, and finally getting on some pre-existing condition insurance that would pay for my medical care, I gave in one night when the chest pain was so severe it was scaring the crap out of me, and we drove the 40 minutes to the hospital on the island at Galveston, John Sealy Hospital UTMB.
Once again, my entire world changed from what they told me. I went in with the wheelchair, unable to breathe or walk without assistance, my chest aching so badly I was nearly in tears. The moment I told them I had chest pain, they didn’t even do intake on me. They wheeled me straight to the back, yelling, “We’ve got chest pain in 108!”
Before I knew what hit me, I was surrounded by people who were poking me, unbuttoning my dress, sticking probes on me, looking for veins for blood draws and asking questions. There must have been 7 or 8 doctors in the room at any one time, along with nurses in and out. They had trouble finding veins, in part because I was so swollen with fluid but at the same time was dehydrated, and in part because I’m a hard stick no matter what the circumstances. Always have been. Really sucks. They scared me. The EKG was abnormal, and they didn’t tell me what was wrong with it, but they were very concerned. They finally, after four tries, got the IV started on the fifth try. They had to put it in my thumb, though, with a very tiny IV size (one usually for ‘babies’ as my pulmonologist put it).
Then they took me in the bed off to X-ray, not letting me move or anything, x-rayed my chest, brought me back, more doctors, more questions, more poking, more blood drawn, more, more, more… and the next thing I know one of the doctors says, “We’re getting a room ready for you.”
I spent over a week in the hospital, and left with instructions on how to take care of myself now that I had: Multiple Massive Bi-lateral Pulmonary Embolisms, Congestive Heart Failure (left- and right-sided failure), Primary Pulmonary Arterial Hypertension. This, of course, is to go along with the adrenal insufficiency, hypothyroidism, and whatever the chronic inflammatory condition that acts like an auto-immune disease that they still haven’t figured out.
So now I’m living with congestive heart failure and what is now known as CTEPH–Chronic thromboembolic pulmonary hypertension, and every day is a struggle. Every day I’m in pain. Every day I’m hooked up to oxygen tubes in my nose just to keep my sats at 95. Every day I struggle to put one foot in front of the other.
And every day I do it. And I will keep doing it… because I am not dying from heart failure and CTEPH. I am living with it, and I have too much to do to let it stop me from succeeding in my dreams, passions, and life. It might slow me down, but it can’t keep me back.
Between the doctor’s appointments and tests and blood draws, I write. I write nonfiction articles, essays, and bad poetry. I write good fiction, crime and suspense and some lighter chick-lit meets women’s fiction just for fun. I’ve been published, but am underpublished, and am working on getting an agent for my novels. This is my life… my blog, and I’m sharing it with anyone who cares. I hope, through the sharing, I can sometimes bring hope, laughter, understanding and a few knowing head nods.
Because my animal family is as important to me in a completely different way than my slightly less furry family members: There’s Jake the Dog, who is my 85-pound heeler/shepherd mix. Jake has his own Facebook page here. And then there is my feathered happiness: Conner the Conure! He’s my little parrot, and I love him dearly! And my latest feathered friend, Memphis, a rescued Goffin’s Cockatoo, who makes me smile every morning and throughout the day. Memphis & Conner have their own Facebook page too, and I put video of all of them up on YouTube from time to time.
Stay tuned for the fun, tears, adventure, musings, thoughts, misadventures and more…
Love and stuff,