Passover and Family

My sweet BIL and SIL hosted the family Seder again this year. Our son and grandson (see picture) flew in from LA, which made it even better. We had a wonderful time with many great conversations and much laughter.

Together with family and friends, we celebrated Passover with a (short) Seder and a wonderful meal. I have MS, and a friend's husband has muscular dystrophy. Our diseases are downplayed; not ignored but, no one makes a big deal of them either. I like that.

We also had the unveiling of my mother-in-law's tombstone, another Jewish tradition. After the small ceremony, my BIL handed out seashells that he had collected. We placed them on all of our relative's tombstones in place of the usual small stones, in remembrance that we were there. It was a nice touch.

Darn it, but it was too cold and windy to go to the beach. I love to sit on a bench on the boardwalk in nice weather while Arnie walks Montana down near the surf. Both of them try their best not to get wet, and they have a great time together. It makes me feel good to see them having fun while I sit and soak up the sun and smell the ocean smells. My favorite place to be is near an ocean. Some day, I would like to rent a house, maybe just for a weekend, maybe for a whole week, that's right on the beach with a big front porch and huge windows that look out onto the water.

My New Ramp

Here is a picture of my new ramp, and the great guys who built it for me. Many thanks to Don and Mason with the Bike the US for MS organization, and Steve who owns Grayson Place Building near Charlottesville, VA. Don, Mason and Steve worked this past Saturday and Sunday, building me a ramp that makes it easier and safer for me to get from my front door to the car and back. Please take a look at Don's website -- http://www.biketheusforms.org/

I also found out that Don put a video of me on YouTube. Check it out: http://www.youtube.com/watch?v=3uQNTI48lMI&feature=player_embedded

This group of super nice men and women are riding from the coast of Virginia to the coast of Oregon this summer. Their goal is not only to collect donations for MS, but also to give a hand to people with MS along the route they'll be taking. If you live along this route, let them know. If you know of anyone with MS who lives along the route who may need a helping hand, please let them know about Bike the US for MS.
　
Thanks, maryann and montana

Feeling Sorry For Myself

I was in a really great mood, until today when I came crashing down. An old and dear friend posted pictures of herself and her friends on Facebook. Don't get me wrong, I am not jealous of my friend. In fact, we have been through a lot of the same emotional crises such as divorce and starting new lives after being dumped like a piece of garbage.

However, seeing her made me aware of my physical situation in amazingly great detail. Here is a picture of me wearing my ankle and wrist weights to counteract my tremors, sitting on my rollator with my faithful and wonderful Montana by my side.

Everything I do has become such a damn struggle. So many, many things I can't do anymore that I miss so much. Even if I wanted to get all dressed up, I still could never feel as elegant as my friend looked in her photos. Not with all the accoutrements I need to get around.

I know this will pass, and my mood will improve. I have a wonderful husband, a loving family (his, but who's counting), a fantastic dog, a home that I love, some good friends, a few great friends, and a couple of cold beers in the fridge.

I am who I am. I have MS, and it has been kicking me down. So, I've got to pull myself up (mentally and physically) and quit feeling so sorry for poor little old me.

Mentally Feeling Pretty Good

It's strange. Even though my body feels like it's falling apart and pieces of it are giving out on me, I've been in a super good mood. I know that a lot of it has to do with the fact that my husband Arnie survived kidney cancer surgery and is doing better every day, but there are also a lot of other things that have been making me feel good.

The day before DH's surgery, our son and his wife had a baby boy. Joshua Samuel is their second child, and our fourth grandson!

Due to the fact that Arnie has diabetes and now only one kidney, and he dislikes most vegetables, we had to come up with some new, healthy meal plans. My wonderful SIL sent a big batch of soup recipes, along with a Cuisinart Smart Stick to make creamy soups. I've made two batches of garden vegetable soup, a huge pot of split pea soup, and a pot of veggie soup that has navy beans, grean beans, and onions. Everything has turned out very good, I'm following the recipes exactly and very carefully. This has made me feel good that we're both eating healthy meals and I'm cooking soup that tastes fantastic. It has given me more confidence in the kitchen!

I got my hair cut the shortest it's ever been (it's 1/2 inch long on the top of my head, and shaved closer in the back), and I absolutely love it! It's very thick and straight, I could never do a thing with it as far as styling goes, so this is as easy as it gets.

I've been going to Yoga and riding my stationary bike a couple times a week, losing weight, and basically eating right.

I also taught Montana how to Commando crawl across the floor. Of course, he could never sneak up on anyone because he makes so much noise doing the crawl, but it's loads of fun for both of us.

MS Yoga and Lunch with a Friend

In January, I found out about an MS Yoga class that was available in my area. I signed up and began taking the class, and I'm so glad that I did. Most of the people in the class have MS, the others have some sort of limitation that precludes them from taking a regular Yoga class. Our instructor is 70, has taught Yoga for 40 years, and is just the sweetest woman you would want to meet and know.

Most of the exercises are done while sitting in a chair, although some of us get down on the floor for a couple of the exercises done toward the end of class, and for the relaxation portion. Montana loves the relaxation portion of the class. I lay down on a rug, and he lays as close to me as is physically possible with his head laying on my stomach. That, in itself, is comfort to both of us. Then, when it's time to get up off the floor, Montana stands close beside me on my left, still as can be, and I'm able to brace myself on him in order to stand up. Without him, I would either have to ask someone for help or not get down on the floor at all. It still amazes me that he adds so much independence for me. After class I feel great, much more loose and relaxed.

Today, DH and I had lunch with a friend of mine who is a reporter for our local newspaper. Meg and I met last March when she did an article about Montana and I. At the time, I was scared half to death. I'd never been interviewed for a newspaper article before! After about five minutes, she had me relaxed and laughing, and I was able to forget to be scared and shy. We had a nice lunch with good food, good conversation, and lots of fun.

Exhausted but Proud

My husband had major surgery January 28. We found out January 23 that he had a cancerous tumor in his right kidney, and we were told that the kidney had to be removed. CT scans and bone scans showed no spread of the cancer, thank God. My dear brother-in-law flew in the day before the surgery to be with us. The day he had to go home, my husband's cousin flew in to be with us until the day after Arnie was released to come home.

Arnie was in the hospital three days. His recovery has been amazing. We are both very grateful that things are going so good and that he is slowly feeling better.

Our positions changed the day of surgery. I became his caretaker, where he has been mine for so long. It has been tiring, but I am very proud of myself. I can't drive and he isn't allowed to drive for two more weeks, so I've had to arrange and coordinate friends and neighbors to take us places. I'm doing all the laundry, taking out the garbage, getting the mail, cooking (some) and cleaning. I've also done some of the grocery shopping and banking. And, like before, I take care of Montana's needs and my own.

I don't like to be in charge of things, I'm always afraid I'll make mistakes. So far, so good.

Montana and I stayed with Arnie in his hospital room every night. It gave all three of us a little comfort to be together. I also feel that when someone is at their most volunerable, they should have another person there to look out for them.

This has been a terrible time in our lives, but I have grown some because of it. I've discovered that I can handle things, and not do too bad a job of it, either. That has made my self-confidence rise a lot from what it was.

Hopefully, he will continue to heal and continue to remain cancer-free. I love this man who is also my friend, and I want him around for a long, long time.

DMD=Disease Modifying Drug

I have been on Betaseron for 2 1/2 years now. I don't think it's helping me, but my neuro is advising me to stay on it. The doctors say that without a DMD, you may get worse now or in the future. But, they can't prove it. So, my plan is to continue taking Betaseron until September. That will put me at the 3-year mark. Then, I will assess my situation and decide whether to discontinue it or keep taking it.

All the MS DMD's are injectibles, there is no pill form. I've been on three DMD's in my MS-life. The first was Avonex. Avonex is only taken once a week, but you have to inject it into a muscle in your thigh. I did it for a year, then I could do it no longer. To me, the needle kept looking longer and longer--until it looked like a damn railroad spike!

The second DMD I was on was Copaxone. I took Copaxone for five years. That is taken every day, the needle is short because it's given subcutaneously, and the side-effects were minimal. At the end of five years I felt it was doing me no good, so I stopped it.

There is also Tysabri, which is a once-a-month IV infusion. There have been deaths related to it, there is no way I would take it.

Betaseron is an every-other-day injection, and it's done subcutaneously. With my next shipment in Feb., I will receive the new syringes that have a much thinner needle. That will be nice!

Arnie now gives me the Betaseron injections. Due to my MS tremors, I was finding it harder and harder to do the injection myself. I use what's called an Autoject, which is a device that you cock and insert the syringe into. You press it to the site you want to inject, then you push a button and the Autoject does the injection for you. The last time I tried an injection myself, when I went to remove the needle from my arm my hand jerked and the needle cut my arm. It was then that I took a 2-week break, and then asked my husband to start doing my injections for me.

My husband cannot stand the sight of needles. He is what we call a needle weenie. However, with the way my injections are done, he never has to see the needle. It took a little bit of time, but he has become a great injector.