....my nightmare started. May 9, 2018, I felt a strange "shift" inside. May 11, I began experiencing double vision. A few weeks later, I could no longer hold my head up. My health quickly degenerated and my breathing was affected. I couldn't walk from one room to another in my house without having to stop, sit down, catch my breath, and rest. My speech slurred, I choked easily and had difficulty swallowing.
At the end of June, I made my very first ride in the business end of an ambulance because I couldn't breathe, and I stayed a couple of nights in the hospital.
By the end of July, I made two more ambulance trips to the hospital. I spent a week in the hospital, enduring multiple tests, trying to breathe, trying to understand what was happening to me.
I came home with a diagnosis of #MyastheniaGravis, MuSK positive. I was home two nights when I made the third trip to the hospital -- I nearly choked to death on a sip of water. My husband literally saved my life that night.
I felt so depressed, so hopeless, so stunned by the whole thing.
A few weeks earlier, I was walking 5 miles a day. Life was going great.
I came home from the hospital, tethered to an oxygen tank, using a wheelchair or a cane, taking a ton of medications that had strange side effects. It's a long, tough year. I've cried buckets of tears, I've screamed at God, I've endured needle pokes, tests, more frustrations than I ever have.
And yet -- I'm still here. I am much better. I am thankful for being able to drive some, to smile, to thread a needle, to eat a normal meal without choking, to take a short walk. I'm thankful for my husband who is a wonderful caregiver, and my PCP, Neurologist, Pulmonologist, the nurses, and the therapists -- all of whom play an important part in my health care. My support system of good friends and family members is a special blessing.
It still isn't an easy adjustment, but I am beginning to settle into my "new normal." I know there will be tough days ahead, but there will also be good days as well.
I just take things one day at a time -- sometimes one hour, or even one minute at a time.
I know this has run long; if you've stuck it out with me this far, I really appreciate your time. :)
Tomorrow is another day....
#learningtoliveagain #Learningtolovemyself #ChronicIllness #muskmg #MyastheniaGravis
Latest
