Saturday, September 26, 2009
Yesterday, I had my first Tysabri infusion. I also signed up for the TYGRIS study.
The infusion nurse had a few problems getting the IV needle into my vein. After two tries on my right arm, she had success on my left arm. Jane is a marvelous nurse and very good starting IV's, but my veins don't cooperate and this wasn't the first time that there were problems.
The Tysabri IV ran for an hour, then I was given normal saline for an hour while being watched and checked for any side effects. Luckily I didn't have any side effects, so was released to go home.
I did get a slight headache yesterday evening and Tylenol helped that. I also got a queasy stomach and sipping seltzer helped that.
No improvement yet, not that I expected a miraculous cure after the first infusion!
The picture was taken at a Nature Preserve in SC. I was very proud of myself for walking up and back down the path, and for getting up and down all those stairs. With Montana by my side, I feel safe and confident. He is one fantastic dog!
Wednesday, September 23, 2009
We took a four-day trip to Camden/Columbia, SC. We stayed at a wonderful B&B named Bloomsbury. This is a home that was owned by Mary Chesnut and her husband during the Civil War. Mary kept diaries throughout the Civil War that were published after her death. The Inkeepers graciously accepted Montana into their home, which we are finding out to be a rarity. That is, a lot of B&B's we've contacted refuse service dogs, citing the fact that they have their own dogs, or people are allergic, etc. Something that could be contested, but we feel that since these are private homes that the owners have the right to say no.
Saturday, DH went to a Civil War symposium in Columbia, and Montana and I stayed at the B&B. I took him for short walks around the grounds, but we mostly sat on the veranda. He napped and I read, knitted, and simply sat enjoying the ambiance.
Sunday, we spent in Columbia. One thing I found that was hard to do was to get across the wide streets before the lights turned green. There was a sign with a countdown, and I never made it in time, but luckily no one ran us over!
Monday, we spent in and around Camden. We went to a Nature Preserve, but only got to see a lizard and a flock of geese. Evidently, we went during the wrong part of the day. I did walk down and back a 200 yard path that led to an observation deck, then walked up about 20 steps to the platform. It took me a very long time, but it was quite an accomplishment!
We are home now, resting up from the trip. I'm very excited about my Tysabri infusion Friday, and will post all the details of it next week.
Saturday, September 12, 2009
My 40th high school reunion was wonderful. A handful of us who have kept in touch since graduation all sat together at the same table, then went out to lunch the next day. We talked and talked. I walked around a little, but mostly just sat at the table and talked to people who came and plopped themselves down next to me for a chat. No one asked me what was wrong physically with me, for which I was grateful. However, Montana was a huge hit. Everyone wanted to know about him and what he was able to do for me. So, through him, my illness came out for discussion after all.
The picture is of my handful of HS friends. We had a 2-hour lunch, talking and laughing, and no one wanted it to end. What a wonderful weekend it was!
I was accepted by NORD for financial assistance with my Tysabri co-pay, so I will begin the infusions September 25. I can't wait! I feel so very positive about this drug; that it's either going to improve some of my symptoms or, at the very least, stop the progression. The people at the TOUCH program who handle Tysabri patients are very nice and caring. They sent me a tote bag, a nice red fleece blanket, and lots of information and resources about Tysabri.
Time to go work in the garden on this beautiful day. I've planted my first ever winter carrots, and already the feathery tops are an inch high. I have so enjoyed my five little gardens! I had enough tomatoes to share with the neighbors, and for us to eat nearly every day. I even made two batches of tomato soup. However my favorite, after a tomato sandwich, was to peel the tomatoes and chop them up, then add olive oil and balsalmic vinegar and chill. Now, that is delicious! I also had flowers (I grow nearly everything from seed) called Asclepias that have a beautiful red, orange and yellow bloom. These get about 3' high, and they attract Monarch and Black Swallowtail butterflies.
The five little gardens, plus the potted plants on the deck, were just enough for me to handle. I do a little bit at a time so I don't run out of energy, and I still get some exercise and fresh air and sunshine. Plus, I get a great sense of accomplishment growing and harvesting plants. Montana is always out with me in case I fall, and DH pokes his head out once in awhile to see if I'm okay. They keep watch over me, but not in a pushy way. I love them both for that.