Saturday, March 27, 2010

Tysabri Infusion #7

This precious pup is Montana when he was about three months old, living with Linda and Jim, who were his puppy raisers.

I had my Tysabri at the new infusion center. I was there for 3-1/2 hours. First, either my new neurologist or the Tysabri people have added Tylenol and an antihistamine to the protocol. No one told me. I had taken a Zyrtec that morning and since it's an antihistamine and a once-a-day pill, they accepted it. They gave me a Tylenol, and then had to wait 45 minutes before they could begin TY administration. Now, I know to take one before coming in!

Since I was a new patient at the infusion center, there were a whole lot of screens to be filled in. Finally, the questions were asked and answered and the Tylenol was in my bloodstream. Gwen, my infusion nurse, got the IV in but then the vein blew. Second time, other arm, worked. So, after all that, there was still the hour of TY and the hour of normal saline, then 15 minutes of observation.

Arnie was able to take Montana for a long walk around the hospital grounds. Of course, when they returned, I still was waiting to be infused. We talked awhile, and I suggested that he go ahead and pick up the groceries we were going to get when we left there, take them home and put them up. Then, come back at 5:00, and surely I would be able to leave by then. That worked out okay, and saved us some time.

I'm all excited because Thursday we are going to NJ for Passover. Our son and grandson are flying in from CA to join in the celebration. Haven't seen them since Thanksgiving. My SIL has hired a caterer for the cocktail hour and for the Seder meal so that she can sit and enjoy the family instead of cooking for days like she did last year. She is a fantastic cook, but this will be much easier on her.

A friend of mine, Leigh Brill, has written a book titled A Dog Named Slugger that is due out next month. It is about her first service dog, and how he helped her get through graduate school. I can't wait to read it, and since she's in the book club I belong to, her's will be the next book we read and discuss. It is all very exciting for all of us at Saint Francis!

I hope everyone has a good week with lots and lots of sunshine and love.

Thursday, March 18, 2010

Happiness is Helpful

My husband is off chemotherapy for three months. He had a brain MRI and a bone scan today. If those are clear, then we can both relax until June. We decided to celebrate his release from chemo by taking a trip to Newport News, VA. Friday was yucky, cold and raining. We, however, were in the War Museum so the weather didn't bother us much. We had a lovely meal at Cheeseburger in Paradise. Arnold doesn't drink, so he had a delicious lemonade with strawberries floating in it. I had a margarita. We both had burgers.

This was kind of funny. The manager of CIB ran over to us and said he noticed we had a service dog, He explained that they had just gotten Braille menues and wondered if either of us could read Braille. We explained that neither one of us was blind, and that I used Monty to help with my balance and things like that.

The next day we spent four hours at the Maritime Museum, seeing things we didn't see on our last visit there. We also took a long, slow walk on the hiking trails there. It was a marvelous day with 70 degree weather and lots of sunshine.

I begin my Tysabri infusions next week at the new place where Arnold gets his chemo.

Happiness definitely helps the mind and the spirit. Does it also help MS?

Wednesday, March 3, 2010

New Neurologist

I had an appointment Monday with my new neurologist. He seems nice, listened when I was talking, etc. I just have to get used to him, because I loved my old neuro so much and was so saddened to see him move across the state.

We went over my past MS history thoroughly. He did a complete neurological exam with the pin, tuning fork, finger-to-nose, and all the rest. I did the "drunk driving test" and only made it to my third step before I began to fall. He wants me to have an MRI sometime this spring, as it's been two years since my last MRI, and also because I started Tysabri last September. I told him that I also wanted to change my infusion center from where my old neuro was over to the one connected to the hospital, which is where my husband gets his chemo now and which is only five minutes from the house. He's already gotten the paperwork started on that. This neuro's office is right by the same hospital, so it's going to make things much more convenient.

We also talked about my tremors and if I thought the Klonopin was helping them. I told him I honestly don't think the med is helping, so he suggested I get off it slowly, decreasing it by 0.5 mg a week. I'm still to take it at night, as I take it for insomnia. It works great helping me to sleep the night through.

I had my 6th Tysabri infusion last Thursday. I had two good months, where both my tremors and my balance improved. However, three weeks after my 5th infusion they got worse and didn't improve this time. I know that Tysabri isn't supposed to be a miracle drug, that it's meant to keep your MS stable, but I was hoping that I would be one of the ones who got extra benefit from it. However, if it does just keep me stable I won't complain. Before Tysabri, while I was on Betaseron, my MS was going downhill so quickly that it was scaring me half to death.

The daffodils I planted this fall are up two inches! Now, that brought a big smile to my face!! :)