I’m unsure what’s worse getting a cold while on prednisone or getting a cold and having MG. I’m sure the three together are working to keep me down this last two weeks. The last two weeks have been the absolute worse since I contracted MG — short of when Elizabethe and I had the flu earlier this year.
It’s a balancing act. One medication has this effect, while another one is supposed to deal with that problem. The doctors have their work cut out for them. It must be quite the dilemma trying to decide if someone should be treated for high blood pressure or taken off prednisone.
I can only wait and see.
Hill Cumorah Pageant
An announcement Sunday was made concerning pageants in the church. It appears the Hill Cumorah Pageant will wind down by 2020. For many of the people in this region, that will be quite a culture change.
I hope people will now spread out their visits to Palmyra. The Pageant windfall is nice, but I think if all the locals play this right, they might seel blessings come more steadily throughout the year and years to come.
People will still flock to Palmyra to see the sacred sites. It just won’t all be mid-July.
We are facing many decisions. We’re leaning towards selling the house and building here in Palmyra, and finding someplace closer to the girls in Utah. There is no way I can physically manage the house. I can barely do the bare minimum each day without totally exhausting myself. Myasthenia Gravis is quite debilitating.
I read that men who contract MG lose about 50% of their income on the average. While I don’t remember the figure of those who become completely disabled, the research paper did say that a large majority find they cannot work at all or very little.
In my Myastenia Gravis for Men group, it is a very common consensus that there is a lot of down-play about the disease. I conducted a little poll and asked, “Do you have pain associated with your MG?”
Now, you’ll find website after website that says there is no pain associated with MG. However, my little poll says about 67% have pain (50% most of the time + 17% some of the time). That’s only 1/3rd who say they don’t have pain. It’s unscientific, but it confirms my suspicions.
Another comment you hear is, “Many people with MG go on to live productive lives.”
We got talking about this in the group. We’re all kind of laughing about how they define “productive”. They definitely don’t mean “active”! Most of us say our productivity is cut drastically and activity even more so.
I know before I caught a cold a couple of weeks ago, my “productivity” was about 30-60 minutes a day. For the last two weeks, it has been about 1-2 hours a week split between 2-3 days. In other words, this cold dropped me from 3.5-7 hours a week down to 1-2 hours a week.
The activity I tolerate most is walking slowly. Even then, I must be careful to avoid overdoing it. When my legs aren’t all weak feeling, it is nice to walk a little. When I overdo it, the results are the pain, weakness, and fatigue.
Even typing my blog is fatiguing. (Hence, so few entries this year.) Brain fog makes it worse. I’m constantly getting red-lines under words because my fingers aren’t hitting the right keys. Then, it’s difficult to think, “What word was I trying to type?” That only makes things worse because I find it upsetting when I type something like, “zyjod od s yrdyz” when I meant to type, “This is a test”. (I’ve never had a problem with my hands being shifted until this brain fog thing started to happen.
Talking is pretty much a no-no. That’s one of the first muscles to be affected. Paralyzed vocal chords carry with them a double-whammy. The first whammy is losing your voice. The second is the reflection that coughing will solve the problem. It doesn’t. It only makes it worse, but try telling your subconscious that.
My hope is the doctors and I will find a good balance of my medication that will allow me to have the stamina to at least feel like I was able to get some exercise in. It may not be the stamina needed to mow the lawn, shovel snow, fix a broken faucet, build a shelf for Elizabethe, etc., however, it would be nice to know I’m able to do something for my heart. It might be riding my stationary bike for 15 minutes a couple of times a day. (Right now, the doctor has told me to not attempt any exercise program until we get my medication stabilized.)
Reality tells me there will be good days and bad days. Hope tells me there should be a way to lesson the bad days (which have been all too frequent lately), and know my limits.