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...

denied. twice.

Have any of you tried to get social security disability? We have. Twice. Both times my husband was denied. Both times, their reasoning was that his "condition" was thought to not last longer than 12 months. Huh?! They also suggested jobs that THEY thought he could do, like we hadn't thought of them before! Seriously. WHO makes these decisions??? I don't understand it. I see what my husband has to go through on a day-to-day basis. THEY get my husband evaluated by some random doctor who doesn't know anything about my husband's health history. For all we know, those doctors might not even be fluent in the symptoms and devastating affects of MS. But that is how it is done. If there is anybody out there who knows of an MS patient who has actually been approved for social security disability, I'd like to hear about it.

As for us, it's not like we are just trying to get "free" money. I know that there are people out there who do that, but we are not one of them. My husband worked for many years after his diagnosis, and believe me, he would much rather work than be a victim of this debilitating disease. We have had several conversations about this topic, and he feels more like a failure as a husband and father because he can't provide for his family. I am fine with going to work, but I have to finish school first so that I can get a good enough job that will support us.

It's just all so frustrating. If there is someone else out there who needs it more than us, then fine. I understand, and I want them to have it. But for now we are barely surviving on what little monthly income we do have. And a little extra would definitely help. However, I am truly grateful for what the Lord has blessed us with. I realize that we have more than some people do and I know things could always be worse (though sometimes that is hard to remember when you are debating which bill to pay!). If nothing else, we have each other. And that is what life is all about. Family. Love. Kindness. We believe that families are forever, and enduring to the end is what we are focusing on.