Mar 22, 2017
Hi all - I will soon be 63, so I guess that's the good news. I've made it this far! I have thought my MS was one of my more minor problems, but it has become Secondary Progressive and is giving me a great deal more trouble. My right leg is a mess, but I'm still walking - yay. My back has been the most painful aspect of my life. I was on high doses of narcotics for years, but tolerance meant I really wasn't getting relief. So a few years ago, I dropped my dose down a great deal. Then when I lost my beloved doctor, I had to make do on the meds I had - for a year and a half. I just couldn't find a doctor willing to take on a pain management patient. I finally went to one to see about other methods of relief and got nerve ablation on my thoracic spine. It worked great - but now my spine below that is killing me and I am at a loss as to what to do. I'm in tears most of the time. My opioid use is down to 30mg/day though - so that's good. If only there were something that would help with the pain!!
Meanwhile, I've had all sorts of autonomic dysfunction and heart palpitations. I developed a septal aneurysm a couple years back. Then a recent CT showed cardiomegaly. I already have mild pulmonary hypertension from my Systemic Sclerosis. I saw my cardiologist last week, had an ECG and a couple minutes of his time. Then Sunday I got my automated result via email which said "Consider anterioseptal aneurysm - myocardial infarct findings now present". I called the office on Monday, but the Dr wasn't in. The nurse said he hadn't analyzed it yet and she'd get a message to him. I never heard back. I'm very concerned! An echo isn't scheduled until the end of April. Seems pretty crazy to me. I've had such serious symptoms I have been tempted to go to the ER - but I'm not someone who does that unless my bones are broken.
Speaking of which, my recent DEXA showed my osteoporosis has reached a critical state. Problem is - the drugs used for it, I can't take cause I have hyperparathyroidism. Oh my - I feel ready to see Jesus about now! I have Medicaid and don't have a doctor who knows me very well - am so discouraged and miserable. I would just check out, but I have a 22mo old granddaughter, my daughter is pregnant with her second - a son, and my son still needs me - well they both still want me around - but I know he particularly would be devastated to lose me. I know it's a part of life. My dad lost his dad when he was just 18. He was home for Easter, his dad went to mow, got tired, came inside and fell in my dad's arms and died. Sudden death heart attack. I watched both my parents die and it's not easy - but at 18? It really effected him.
Well - lots has been going on! Before I thought my heart was giving out on me - I made the decision to get a new puppy - a goldendoodle. I got her last week - she's now 9 weeks old. I want to train her to be my service dog - now I hope I live long enough to raise, train, and love her! I know everybody on here has troubles - I'm not feeling sorry for myself! I am feeling very emotional though. The MS has changed my brain and made me feel down and so fatigued I can barely handle it. Reducing the opioids has made things hard too. It'll take a long time to stabilize after getting off of them completely. I'd love to hear from some of you I've communicated with in the past. I'd love to hear how you're all doing! Please let me know. Blessings to all.