What’s going on .. a check in
Greetings from the Northcoast!
Here is my sporadic check-in with you from the land of Cleve. I did say I would share my journey with you so here we go! If at anytime you see a misspelled word or double letters within a word; please excuse me. My blurred vision has gotten progressively worse since the TIA in March. My neurologist referred me to an ophthalmologist. Although, he stated my pupils weren't responding to light properly which could be a result of the TIA and or the amyloid; he said I might have cataracts. My vision is blurry no matter where I look and it did not happen progressively. It started immediately after they accidentally induced the mini stroke. I don’t have cataracts! So, I’ll wait another month for the ophthalmologist to confirm this. By the way, I’m unable to find an attorney to represent me. The problem? I signed a paper releasing Cleveland Clinic from responsibility prior to the procedure. So, I keep it moving. I had some muscle and nerve tests performed as well. Both hands hurt constantly and are numb and tingly at times. It’s painful to blog. The result of my hand pain being: a very sloppy guitarist! My feet are numb too. The result being: a very sloppy walker! Although these are all hallmark traits of haTTr Cardiac Amyloidosis, I received another referral. This time to orthopedics to see if I have arthritis in my hands. Let’s save some time..I probably do! So again, I keep it moving. Loss of weight, dizziness, fatigue, my heart tap dancing in my chest, shortness of breath and just feeling yucky are symptoms I address daily. I take a newly approved drug (Tafamidis) to improve my “quality of life” and to also assist in binding the problematic proteins. There is no cure, I adjust prescribed diuretics in accordance to how bloated my stomach and intestines become. I finally have that pretty much under control. I weigh myself every morning and take my blood pressure. I call the Amyloid nurse if something is out of sorts. We haven’t spoken for awhile so I guess that’s a good sign. As I’ve been saying recently, some days are good and some not so good..I just don’t know which will be which until it happens. That being said, my last performance with the Smeltztone family will be at the Rock Hall July 25th. I cannot guarantee any performances after this date. I think it’s time to concentrate on taking care of myself right now. I love music and I love all of you. This is not an easy decision but I’m hoping it will only be temporary. In conclusion: I’m blessed to have a way to cover my hospital visits and medications along with awesome daughters that support me with unconditional love, food, and to also have a roof over this humbled body of self. All Is Well! 🖖🏽😎