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...

where have i been?

Well, I've been depressed. The overwhelming feelings of moving 3 months ago, being sick, going to school, having no money, and being a caregiver were too much for me to bear. But I am feeling better and am now trying to get back on track. (At least emotionally, that is. I now have a nasty sinus infection after having a nasty stomach flu earlier this month. Does the sickness ever end?!)

In the meantime, we have successfully completed yet another round of good old Tysabri in Miami, hired lawyers and been officially accepted as clients for getting Social Security Disability, and found some new therapy (the psychology kind) options for Mr. M. Things are looking up.

I am managing straight A's in school, and have even unpacked more boxes and organized a little more. Yes, things ARE looking up.

P.S. I am now going to have to pre-approve all comments, as I have been getting weird Chinese? ones, which translate to things such as "toilet" or "bathroom" when I use an online translator. Weird, right?!

miami.

Yesterday we made the long journey to the Miami VA. Boy, was it long. We left home at 6am and didn't get back into town until 6pm. Mr. M was of course, unable to drive, so I had to do all the driving and was completely exhausted. The last time we went, I was allowed to sit with Mr. M, and relax and prepare for the drive home. This time however, they decided that I was not allowed to stay, so I was left to wander the hospital alone. I tried to study, but the cafeteria got too loud when lunchtime rolled around. There were waiting rooms, but the chairs were uncomfortable. So I eventually wandered. At least I got some exercise!

I did visit Mr. M every so often, to see if he needed me to bring him some food or a drink, and just to see how the infusion was going. I may have mentioned before that the second infusion is usually the scariest, because Mr. M can have an allergic reaction to the medication. But things went well. He did have high blood pressure, which concerned the doctor, but it did go down, and they eventually let me stay the last half hour of the infusion. That was a blessing, because I got to sit in a big, squishy recliner and took a nap! After that, I felt much better.

There were some other complications that bugged (the VA always has complications that bug), but other than that things went well. In fact, two good things came out of this visit.

1. We were able to get a Spinal Cord Injury patient parking sticker. Sure this seems trivial, but we were happier than ever to get it. Parking at the Miami VA is a complete nightmare, even if you are handicapped. But not every person who is handicapped has a spinal cord injury, which MS patients are considered to have, so we were eligible for a "special" handicapped parking spot. Hooray! This means no more driving around aimlessly, hoping that someone will leave so that we can get ANY kind of parking spot.

2. Mr. M's new neurologist, who resides at the Miami VA, and who I just LOVE, agreed to help us get Social Security Disability for Mr. M! What a blessing! His grumpy neurologist in Palm Beach, intelligent as she may be, does not have the bedside manner that this woman has. We tried to get a letter from her in the past, and she actually refused. But now we have someone on our side. This is the third attempt, after all. Now we just have to convince the lawyer to take our case. The one we originally found had to refer us to someone else, and they never called us back, so now we are stuck with a nation-wide firm, who hopefully has time for us.

Things are still hard, but every now and then things seem to look up. I know someone on the other side is watching out for us.

on the road again.

Tomorrow we will be travelling to Miami so that Mr. M can get his second dose of Tysabri. Details of the trip to come...

tysabri.

Mr. M has decided to take Tysabri, a newer MS medication that was at first approved by the FDA, then pulled off the market, and is now back on the market. He was on it once before, but it became too expensive for him to continue the therapy. But since Mr. M is a veteran, he has the privilege of getting all of his health care done at the VA. This is both good and bad. Good, because his health care is free,and as many of you may know, MS is an EXPENSIVE disease. Bad, because we have to drive to the Miami VA once a month in order to get this medication. In the past, we have been charged $5000 a month for this treatment, but now that Mr. M is using the VA, we are able to get him the treatment he wants and needs.

Yesterday we made the long, long trek to Miami. It took us three hours and we saw a total of 5 car accidents, 2 of which were cars that had flipped. It was pretty scary. We had to be there by 9:30 am, so we left our house at 6:00, dropped off the kiddos, and went on our way. We arrived by 9:15, but parking was TERRIBLE, so it took almost 30 minutes to find a place to park. We eventually made it in, and started the process for his first treatment.

Tysabri is considered a biologic therapy, but must be administered in the chemotherapy department of a hospital, by a specially-trained nurse who has been "TOUCH" certified by Tysabri (the company). We spent an hour filling out paperwork and talking with the doctor, and then waited some more while the pharmacy mixed up the medication and brought it to us. (The medication does not last long once it has been mixed up, so the patient must be in the chair waiting for it before the pharmacy will mix it.) Then Mr. M was given his IV and the Tysabri drip began. The drip takes about one hour, but the patient must wait for another hour afterwards, just for observation. We finally arrived home by 5:00, and overall everything went pretty smooth.

As with any medication, there are some risks associated with Tysabri, which both Mr. M and I have fully considered. The biggest risk is an infection in the brain, called PML, that can develop while taking Tysabri. But his doctor is going to be monitoring him monthly and we are hopeful that he will not contract PML. His doctor is a genious. She is so smart, and deals only with MS and Tysabri, so she is pretty much an expert. She has a wonderful bedside manner and is so personable. We just love her. I only wish we had met her sooner.

**If you would like more information about the drug Tysabri, click here:

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/home/index.xml