Happy Birthday, Zachary

Today is my son Zachary's birthday.

What do you say to people when they ask, "Do you have any children? How old are they?" It is a hard question for me.

Zachary died June 18, 1993. He was 13 when he died. He was at a wilderness camp, and he had a heat stroke. The head counselor tried his best to get him to a hospital, driving while trying to do CPR on my son at the same time. He drove this way for two hours until they reached a town that had an ambulance. Then, it was over an hour until they reached a town with a hospital. By then he was in a coma, and he died shortly after.

Zachary was a good boy, a sweet boy, and my baby. I have a daughter who will be 32 this year. We never see each other, but that's a whole other story. I still love her, though.

So when people ask how many children I have, I tell them that I have two. Then, I hope that the subject can be changed before I have to go into all the rest of my story. Not that I don't want to talk about Zachary, but I'd rather talk about him with family who knew him and loved him.

I remember when I had to start using a cane. My daughter was embarrassed and wouldn't walk beside me or anywhere near me, so that no one knew we were together. Zachary didn't mind, though. He was able to accept the cane and just see me as his mom.

Sweetheart, I miss you and I love you. You will always be in my heart and still a part of me. Mom

Feeling Groovy

Yesterday, Arnie went to a Civil War gathering outside of Appomattox, VA, so Monty and I had the day to ourselves. I cleaned out one more of my little gardens and got the soil ready to plant in May. In the afternoon, I took Monty for a walk. It's a little hard on my own, but we managed. Then, we came home and I opened all the windows because it was 70 degrees. Finally, I opened an ice-cold beer, and sat and read while Monty took a nap.

Friday, we had Zipper over for the day. Zipper is a Saint Francis carreer-change dog. She was being fostered by Monty's foster family and hurt her leg, requiring surgery. That meant that she could never be a service dog. So, Kim adopted her. Monty and Zipper lived together for over a year while he was going through training. They get along great, still. We took them for a walk, played ball, and they chased each other around the yard. Since it worked so well, we're going to make it a regular thing.

I got a call from Nikki, the advertising director at SF. She said that since Arnie and I do so much for the organization, they want us to go to Putting on the Dog as their guests. This is the largest fundraiser SF has, and I was thrilled to be invited.

Today, I made Monty cookies, and then we took him for a walk. Cut it short though, because today it's 80 degrees without a breeze. Way to hot for me with MS and Monty in black fur to be out walking, not to mention Arnie who is just three weeks out from chemotherapy!

We have our lawnmower in the shop for repairs. The yard was looking awful, so Arnie asked our neighbor if I could borrow his riding mower. Ten minutes later, Jerry was out mowing our yard! I must point out that Jerry is two months out from a heart attack and open heart surgery, and two weeks out from hernia surgery. Amazing guy.

We had a wonderful Passover in NJ. Our son and one grandson flew in for the occasion. The weather was beautiful, and we all had a wonderful time. My BIL and SIL went with me to see Clash of the Titans in 3D. I loved it! It's been years since I've been to the movies!

My Daffodils are spent, but my tulips (see picture) are still beautiful. Our little Chinese Fern tree is covered in leaves. I worried about it surviving the winter, it's so small. I think all the snow we had acted as a ground saturation, and helped all the plants. Bye for now.

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.

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?

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!! :)

aha moment: coming out of my shell.

aha moment: coming out of my shell.

Fantastic Doctor

This is not an MS problem, but it ties in with yesterday's blog about good and bad doctors. By the way, the picture is looking toward Salem with the snow-covered Appalacian mountains in the background.

I have had numbness to the point of deadness in my little finger and ring finger and half the palm of my left hand for months now. Yesterday, I had an appointment with an orthopedic surgeon, and I was pleasantly surprised.

The building was huge, with lots of patients waiting, and 13 doctors in the practice. I figured it would take forever. However, I hadn't finished signing in when I was called back to the inner sanctum. Dr. Hagan walked in and introduced himself, asked if he could pet Monty, spoke to both myself and my husband in a pleasant manner, and was all-around very nice. He examined my hand, arm and elbow, then looked over the records my neuro had had sent over.

I was diagnosed with cubital ulnar nerve compression, which is going to need surgery to correct the problem. There are no guarantees that I will eventually regain the use of my two fingers, or the strength in my thumb (which was also affected), but I am not hesitating to have this surgery as soon as they can work me into the schedule.

Dr. Hagan will make a 3" incision over my elbow region, and adjust the nerve in the canal that it runs through where it is being compressed. He said it's possible that he will also have to do something (I forget this part) with the muscle that covers the nerve. The surgery will take about an hour, and it will be outpatient surgery, and I'll have to wear a splint on my arm for a week.

I'm hoping it's soon, because I want to get this over with and get fixed up. I'm having a very hard time typing, using only two fingers on my left hand when I'm used to using four. I also have a hard time gripping things, and drop things right and left. It's very frustrating. However, there is no pain--only the dead numbness.