Well, I've been gone for a while! I was actually admitted to the hospital in Ann Arbor (U of M) last Friday the 26th. I was given HUGE doses of IV Solu-Medrol (steroids) and felt like a million bucks...until they started wearing off. I thought the effects would last MUCH longer than they did, but it was very temporary. I did, however, get discharged a day early, but stayed overnight with Doug at the Med Inn because I still had pheresis the next day. I felt so good Sunday that we drove to Bronners in Frankenmuth, and had dinner out. I had a real, over night DATE with my husband! It was awesome.
But short lived. I had the pheresis Monday, and have been going downhill from there. Thursday I started getting horrible hip pain, could barely walk. Called the doc, upped my steroids to 30 a day to help with the pain. The steroids (prednisone) are helping though...but they do such horrible things to my body. I did NOT want to go up on them, but it's the only way to get rid of the joint pain. Now it will be months of tapering back down again. It's quite frustrating because I had lost 14 pounds on my new healthy eating plan, and prednisone packs on weight. When I was on 30 mgs a day when I was just out of the hospital originally, I gained 65 pounds. Prednisone makes you so hungry you could rip the bark off trees. And moody. And make your blood sugar go crazy. And gives you osteoporosis. But it can also save your life. It's SUCH a love/hate thing.
Ever since pheresis last Monday I have conutinued to go downhill...double vision, neck too weak to hold up my head, extreme weakness (like when I was originally hospitalized) in my arms and legs...Praise the LORD my breathing is okay...otherwise it's back to the hospital.
Anywho...today I have some improvement! Hallelujah!!!!! My neck isn't very sore at all (from holding my head up) my eyes are come and go, my hip pain is much better, and my arms and legs are, well, inconsistent, but not ALWAYS weak. YAY. But it's from the Prednisone.
SO...the doc wants me to have 3-4 MORE pheresis treatments boom, boom, boom. We are tentatively going Tues the 7th, Friday the 10th, Tuesday the 14th, and Thursday the 16th. They said it was highly unlikely that pheresis was ineffective since it has always worked before; my MG is simply out of control and needs more treatment than usual. I am SO THANKFUL to all of you who have helped and are helping my family!!!
We could not be getting through this without your prayers, support, and physical help. THANK you from the bottom of our hearts. If we can get through these next 2 weeks, I'm feeling like we're gonna be GOOD.
I saw this in a magazine a friend sent to me called HopeKeepers:
"Let us not underestimate how hard it is to
be compassionate. Compassion is hard
because it requires the inner disposition to
go with others to the place where they are
weak, vulnerable, lonely, and broken.
But this is not our spontaneous response to
suffering. What we desire most is to do
away with suffering by fleeing from it or
finding a quick cure for it....
This means first and foremost doing
something to show that our presence makes
a difference. And so we ignore our greataest
gift, which is our ability to enter into
solidarity with those who suffer.
Those who can sit in silence with their
fellowman, not knowing what to say bnut
knowing that they should be there, can
bring new life in a dying heart.
Those who are not afraid to hold a hand in
gratitude, to shed tears of grief and to let a
sigh of distress arise straight from the heart
can break through paralyzing boundaries
and witness the birth of a new fellowship,
the fellowship of the broken."
That last paragraph speaks volumes. I know some folks just don't know what to do. I know that it can feel akward and scary dealing with someone whom you normally see "OK" and to see them barely able to walk. But those "not knowing what to say but knowing that they should be there," well, it truly can bring new life. God bless you.