Tuesday, April 13, 2010

what's new?

I have been super busy lately, which unfortunately has led me to neglect my blog. But there are still things happening in our world of MS.

TYSABRI: Mr. M's infusions are going well. The last time we went, the whole process seemed faster than normal. Maybe it was because we got there a little earlier than normal?! Mr. M is supposed to take Benadryl before his infusions, just in case he has an allergic reaction to the medication, but he forgot this time. Fortunately, nothing happened. The grouchy, yet highly skilled doctor that has kicked me out of the treatment room in the past has also been really nice to me. I have been able to stay with Mr. M without any problems, and she is even joking with us! Maybe she was just having a bad day before.

SOCIAL SECURITY DISABILITY: We have finally mailed in the 5,000 page document required for us to retain our attorney. Now, we wait.

WHEELCHAIR: Right now Mr. M uses a manual wheelchair. Why? Because, while he was given an AMAZING power chair courtesy of the VA, we are unable to use it. Why? Because the dang thing is HUGE! We have a minivan, and while the VA has approved us for a conversion, the chair that they gave Mr. M is still too big and heavy for a minivan. In order for him to use it at all, we are going to have to purchase a full-sized van AND raise the roof and drop the floor!!! Can you imagine???!!! Well, with the economy being the way it is, and gas prices being the way they are, there is NO WAY we are going to be able to purchase said full-sized van. Our solution? Request that the VA give Mr. M another power chair. One that is smaller and that meets the needs that he has currently. His chair that we have now is a full rehab chair--one that he hopefully will not need for many more years. As for now, the mother-of-all-power chairs will continue doing what it has been doing for over a year-sit in my tiny apartment and act as a bookshelf/coat hanger/place where the cat likes to sleep. Oh, are you wondering why he can't just keep using a manual wheelchair? Because he has had shoulder surgery in the past, which has never properly healed. Because he also has bursitis in his shoulders and it is extremely painful for him to wheel himself around. Because he has MS and wheeling himself around gets pretty tiring. It's just not practical for him. I want him to have as much freedom as he possibly can, while he still can. And a smaller, yet capable power chair would give him that.

PAIN IN THE NECK: Literally, Mr. M has enormous amounts of pain in his neck. And back. And down his spine. For as long as we can remember, he was always told that his pain was due to depression, and that once we got his depression under control, we would be able to get his pain under control. Not so. His wonderfully brilliant neurologist that we see in Miami has been looking after him, because she is in charge of the Tysabri infusions. She is not considered to be his regular neurologist, and we are still putting up with the one we don't like in West Palm Beach, but she still has to see him every few months, aside from seeing him in the chemo unit. Her last appointment with Mr. M revealed what we had thought all along-that his MS was in fact causing him constant pain. There is even a name for it, but I can't tell you because we had the kids with us, so I was in the waiting room and Mr. M forgot the name. But that is not what matters. What matters is that his pain is REAL. He is not making it up, nor is it all due to his depression. Mr. M told me that the doctor knew exactly where to push on his spine to find the pain. And when she did, he said it felt like he was being stabbed with a knife. I can't even imagine being in constant pain, with no relief. He has never been given any narcotics or pain killers. He has just had to suffer. No wonder he sleeps all the time! hahaha But seriously, the doctor has finally given him something that is not a narcotic, but rather is supposed to get into his system and work with his body to kill the pain. It is called Gabapentin. However, this drug has a nasty side effect of...you guessed it...fatigue! Will we ever be rid of the fatigue?! It seems to rule our lives. But I suppose being fatigued with no pain is better than being fatigued and in pain. I'll let you know how it goes.

Well my faithful readers and strange friends speaking an unknown language, I bid you farewell. Until next time...

1 comment:

  1. Certainly I am one of your strange friends!

    I really hope the Gabapentin works. Chronic pain is depressing (NOT the other way around, if you ask me!!!!)