Hanging on by My Fingernails

That's what I'm beginning to feel like. Since this is an MS blog I will tell you about my MS first, then I will move on to other things.

My next Tysabri infusion is scheduled for Wednesday, December 30. During the past week and a half, most of my symptoms have come back. My tremors were down to just a slight shaking of my head, and now they are full-body tremors once more. My arms are weak again like they were before my 1st treatment. However, I'm still walking without walking aids--except, of course, Montana. My balance isn't perfect, but I haven't fallen in quite some time now.

I had an EMG nerve conduction study done on my left arm, because the two last fingers on my left hand are totally numb and useless, my hand is very clumsy and doesn't work right. The neuro (who is leaving and moving to northern Virginia at the end of this month) has given me a referral to an orthopedic hand specialist. I have either a trapped nerve in my elbow region or a lesion. That will probably involve surgery, but that is definitely going on hold until we get Arnie taken care of.

We just got back from a nice walk. The streets are clear, but there are still very high piles of snow from the snow plows, and most of the snow that hit a week ago last Friday hasn't melted. Our stree has become a major street, with delivery trucks and 18-wheelers going awfully fast up and down it. Luckily, I'm friends with a woman who lives up by the golfcourse, which is a five minute drive from our house. She has told me to park in their circular driveway any time we take a walk and to walk in her neighborhood, which has a very small amount of traffic--and almost everyone drives slower there. I can't begin to tell you the feelings I get to be able to join in the walk with Arnie and Montana!

My dear husband is halfway through his chemotherapy. His symptoms are diminishing daily, which is quite a relief for both of us. He still has the cough, but it's much better. We'll just have to see how he does Monday after a 4-day rest from the shots due to the Christmas holiday. He is 85% sure that he will finish this round. After we get the results January 18, we will have to make some major decisions. I love him. He is my best friend and lover, and we've been married for 21 years; however, if he decides on no more therapy I will be behind this decision. So, we shall see. Because of the cancer returning so quickly, our son Scott and his family have decided to move back to the States from South Africa. That is a very good thing, as they've lived in Africa for three years now and we miss them like crazy. The picture I've posted is Lenny, our dear daughter-in-law and Scott, our son, Albert and Alex, our 6-year-old and 10-year-old grandsons.

We had two scares with Montana in the past three weeks. The first was a pinched nerve in his back, which was treated with pain pills, muscle relaxers, massage, and warm heat to the area. Then, he began vomiting every day. I called his trainer who said it sounded like Empty Belly Syndrome, which is when the dog's stomach is empty and begins to fill with bile, which makes them throw up. After increasing his food some, adding protein to his snacks, and giving him a handfull of kibble at night before bedtime, it cleared up.

So I am holding on by my fingernails, hoping and praying that things get better and that the chemo works.

Tysabri #3

I have a lot to write about this week.

First, my last Tysabri infusion was December 1. That evening, I noticed that my balance had improved somewhat. I was no longer running into walls and doorways. As of today, my balance is as good as it was five years ago--that's when it began to get bad. Three days ago, I took my first walk with my husband and Montana. That made both of us very happy; we had grins on our faces. It wasn't easy, and halfway through the walk my legs got shaky, but that's because my legs are weak. A walk with Montana and Arnie has been a dream of mine since he came to live with us.

My tremors have also improved. However, we don't know if it's because my neuro adjusted my Klonopin dose or if it's because of the TY.

I have energy again. Instead of sitting like a big lump in my chair, I'm able to get up and do things around the house.

Second, Arnie had a CT scan and he now has cancer in his lungs. The oncologist said that it probably has been there for a year (he had his kidney removed in January due to cancerous tumors), and that the cells traveled through his bloodstream from his kidney to his lungs. However, it took them awile to get large enough to be picked up on CT scanning. Monday, he began chemotherapy. It's called IL-2, and it's given by injection five days a week for six weeks. Then, they will take another CT scan. This only works in 15% of the patients with cancer like his. If it doesn't work, then we will go to a large teaching/research hospital, either in Charlottesville, VA, Raleigh-Durham, or Winston-Salem, NC. We want the best, and we're afrad that the small hospital here in Salem can't give him the best. I think he's going to be one of the 15% that this works on--I've got to think that, because the alternative is not good.

Third, we went to New Jersey for Thanksgiving, and we had a marvelous time. Our son, DIL, and two grandsons were able to fly in from LA to be with us, and that made it even more special. The picture I've posted is Aaron, Arnie, and Montana in Ocean City, NJ (my favorite place to be).

Things I Miss

MS has made me feel grateful for the things I can still do. And, because of the complications of this disease, I qualified for my wonderful service dog, Montana. However, because of the complications of this disease, there are a lot of things I can no longer do.

I can't take Montana for a walk. That is top on my list of things I would most love to do.

We used to live in Arizona, and we hiked a lot. A place called Sabino Canyon was my favorite, where we would walk up four miles and then back down four miles. I could hardly move the next day, but I felt so very healthy out there on those trails.

I can't drive a car. Driving is huge part of your independence, and it is awfully depressing to lose that ability.

I can't play Frisbee with my grandsons. Of course, it's moot since they live in South Africa now!

I can't walk without Montana on my left and a forearm crutch on my right. It's amazing just how much you take walking for granted until you either can't do it at all, or you have a very hard time doing it.

I'm still waiting for the Tysabri to kick in and give me back at least something that I lost. Maybe next month.

Tysabri #2, Trip

I had my second Tysabri infusion this week, and all went well. No side effects, but my energy level has not gone back up again like it did after the first infusion. I'm not getting any worse, seem to be staying at my baseline, so that is good news.

We went to Newport News, VA. We visited the American War Museum, and I made the mistake of using my forearm crutch. There was exactly one bench in the museum, and I didn't have enough strength to see more than 1/4 of it. The next day we went to The Maritime Museum, and this time I used my walker. We were there for six hours, and didn't even see half of the museum. This was my choice, because I love anything that has to do with the sea. Ate at my favorite restaurant--Cheeseburger in Paradise, and got to shop at Trader Joe's!

From there, we drove to my BIL and SIL's home. DH's cousin and her husband and two dogs also came, and the six of us had a wonderful time together. We all ate too much. The last day there, I had to put on a pair of sweatpants because my jeans were too tight around my waist and so very uncomfortable. We went to the beach because my BIL had a kite that he wanted to fly, but as soon as we got out of the car it started to rain.

I love these people dearly. They watch out for me, like DH and Montana, but they don't make it seem like they're doing it.

It was a nine-hour drive home, but we had to do it that way because I had to get my Tysabri the next day.

Living With a Service Dog

As many of you know I have a Saint Francis service dog named Montana, who is a 4-year-old black Labrador Retreiver. He came into my life the end of December 2007, so we've lived together for nearly two years now.

It is a lot of work and responsibility owning one of these fantastic animals. Do you know that, with the remarkable breeding, raising of the dog until he or she is placed with a partner, vet bills and training, they are estimated to be worth $25,000.

At first, I was terrified that I would do something wrong and they would take him away from me. I lived in fear that they would decide I didn't really need him and someone else on the waiting list needed him more. Of course, none of that happened. I relaxed, and Montana has always been relaxed.

The other day, my husband asked me what my choice would be if I could 1) be cured of MS and have to give my dog to another who needed him, or 2) keep Montana and keep MS. There was no hesitation, I said that I would rather keep him and not be cured. Note: That will never happen either, because six months after he came to live with us I signed ownership papers. He is mine, as I am his.

Because service dogs go out in public, in doctor's offices, restaurants, hotels, and even hospitals, they must be kept groomed and clean. I brush Montana every day, brush his teeth three days a week. I have his nails clipped every other month at his vet's office because I don't have the strength in my hands to do it myself. His trainer bathes him four times a year for me out at the Saint Francis farm.

We work together every day, practicing the commands I use all the time and also practicing the commands I rarely, if ever use. The two biggest things he does for me is to walk on my left and help me keep my balance. I can grab his shoulders with my left hand if I lose my balance. He's also been able to steady me just by standing right up against my left leg. The other thing he does for me is to help me get up off the floor. If I fall, or if I'm sitting down grooming him or petting him, I can't get back up by myself. I get into a squatting position, and he comes to my left side. I'm then able to hold onto him and push with my right arm on the floor, and get to my feet.

He picks up things I drop, including my forearm crutch. He can get the phone for me in an emergency. He can run to the other end of the house and get my husband. I say, "Montana, help!" and he runs to the nearest person (who happens to be my husband most of the time), he barks twice, then he runs back to me.

He is also able to conduct a business transaction. Say I'm in a wheelchair and I can't reach the cashier. I would hold my money or my credit card out to Montana and give him the command "take it", then I would say "Montana, up!". He jumps with his front feet on the counter and holds the money or card until I say "drop it". He then drops it in the cashier's hand.

It's like anything else, if you don't practice something you forget how to do it.

He has made a world of difference to me and for me, and I try to give back to him as much or more than he gives to me.

Staying Positive is Hard!

I'm finding it hard to stay positive. Okay, I started Tysabri and I've only had one infusion. I did notice that I had energy, and I still have it, where I didn't have any at all. That's very positive.

However, my neuro increased my Klonopin but I'm still having tremors. He didn't feel that the Tysabri would help the tremors. Sometimes they're mild, but other times my entire body is shaking. It's hard to walk, type, feed myself, write; any type of coordinated activity is hard and sometimes impossible. Add to that, my little finger and ring finger on my left hand are completely numb and have been for about four months now. It's amazing how much harder it is to type with those numb fingers. I know, poor me!!

The muscle spasms in my right leg are worse. My neuro said that he wants to wait and see if the Tysabri will help in that aspect. I'm doing exercises, but sometimes in the middle of the night it gets so bad that I have to get up and walk around until it goes away. Sleeping on my left side has become impossible, because that immediately brings on spasms.

I also told my neuro that I'm worried about my cognition. I'm having a very difficult time remembering things, and these are things I've just heard or said. I'm having a hard time naming items. That got me worried about Alzheimer's, although it doesn't run in my family. That, too, my neuro wants to wait and see if the TY will improvie my memory before he starts running any kind of tests.

On the positive side, we're going to Newport News, VA for two days. We are going to spend one entire day at the Mariner's Museum. This will be one of my highlights as I love sailing ships of any kind, especially the ones from the 1600's. We will be visiting a few other museums in the area...and there is a Trader Joe's in Newport News! I love Trader Joe's, but there isn't one anywhere near where we live. When we lived in Tucson, we went there at least once a month.

After Newport News, we will drive on the bridge over the Chesapeake Bay, stopping at pull-out places to enjoy the bay and the ocean. Then, it's on to my BIL's for some family time.

The day after we return from this trip, I will be getting my second Tysabri infusion.

I'm trying to stay positive, but I find it's much easier to become negative. Maybe it takes too much energy to stay positive?

Tysabri Infusion #1

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!

South Carolina Trip

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.

High School Reunion and Tysabri

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.

Tysabri and Little Pieces of My Live

At my last neuro appointment, he and I had a talk about how my MS is getting worse and how he and I believe my current therapy (then), Betaseron, just wasn't helping. I told him that I wanted to start Tysabri infusions and he agreed.

Problem is, I have Medicare but no supplemental insurance. The Infusion Center figured that my co-pay would be $575 every four weeks. There is no way in hell that we can afford that kind of money, I don't care how good the drug works.

I contacted TOUCH, and they put me in touch with NORD. I got paperwork from NORD yesterday, and we'll get it filled out and make copies of our financial records, hoping that they will cover my co-pay.

If I do get to go on Tysabri infusions, it will be wonderful. I honestly believe that this drug can help me.

If I don't, I'm not going to get depressed or sad. I will just continue on with my life, deteriorating toward who knows what. I will be DMD-free, anyway.

In other news, I was invited to join a book club--my first ever. Our first book was Travels With Charlie by John Steinbeck. Loved it. We meet every other month at a nice little restaurant that is closed for lunch during the summer, except for the book club. We have great food, good discussions, and lots of laughter. Three of the women in the club (including me) have Saint Francis service dogs. The woman who started the club is also the woman who co-founded Saint Francis. There are 10 of us, and everyone is nice and friendly. Our next book (just started reading it today) is The Good Earth by Pearl Buck. Think I may have read it in high school, 40+ years ago!!

I have also volunteered and been accepted to be on the Outreach/Screening Committee for Saint Francis. Eventually, I will be calling people who have applied for a service dog, asking them questions and talking to them about the responsibilities and hard work that goes into training with your dog. I will sit in on interviews of people who have passed the screening, and I'll have imput into whether or not I believe they would be a good candidate for a dog.

These two things are giving me something to do outside of the house, and also giving me a sense of accomplishment.

Next Saturday is my 40th high school reunion. I am very excited about it. This is the first one I've ever attended. There are a group of us who have kept in touch through the years who are all going to sit at the same table. Next morning, this same group is meeting for lunch and talk. There are so far 45 graduates (plus spouses) who have signed up to come. My class had about 125 people in it, so that's not a bad turnout.

Good Grief, My MS Is Getting Worse

My tremors are increasing, my balance is worse, and I can barely lift my right leg. I'm getting worried. I had a 3-day course of Solumedrol, but nothing improved. My neuro increased my Klonopin, but that's not helping my tremors.

I've made up my mind, after talking to people at the Infusion Center and reading posts on my MS forum, that I'm going to tell my Neuro that I want to stop Betaseron and go on Tysabri. I've heard more people say they've had improvement than not on Tysabri. I don't know if he will go along with it. If he doesn't, I'm seriously thinking about trying to find an MS specialist. I really like my neuro, but I think he and I need to get more aggressive in my treatment.

I have an appointment with him the end of this month, so we shall see how it goes. Wish me luck.

Good-bye Sue, We Miss You!

On Mother's Day, a friend of mine died. I knew Sue through Saint Francis Service Dogs. She was one of the first people to be partnered with a St. Fran dog, and his name is Barkley. Yes Barkley is 12 years old, and he was by her side for ten years. Barkley will continue to live out his life with Sue's husband and family. He is a very sweet golden retriever who loves life and people.

Sue was one of these people who never met a stranger, always took a moment to stop and talk to people who wanted to know about Barkley and service dogs, and always had time to talk to friends and ask how they were doing and leave them with a smile. She had a myriad of health problems, and was on supplemental oxygen at all times. She had seizures. Barkley knew to lay across her during a seizure, and then to go for help or the phone afterwards.

We live in a small town, and every time we went into Walmart or Krogers someone invariably would say, "you just missed Sue and Barkley".

During one of our partner classes, Sue told a funny story about Barkley. At night when he needs to go out to park (bathroom), he waited until one of them turned on his flashlight and handed it to him. He then would go out with the flashlight to do whatever business he wanted to do. Then, he will come back inside and hand back his flashlight. So funny, so sweet!

Sue's memorial service was this past Monday. Barkley was sitting with the family. There were also five of us with our service dogs who attended the service, plus lots of family and friends. Sue's son is in the Marines in Iraq, and the service was postponed until he could get home to be here for it.

Sue's husband said that Barkley is okay as long as they can keep him busy, but then he starts looking for Sue. It is so very sad, because it's impossible to explain to an animal that the person is gone.

Good-bye Sue, we miss you!

Mowing, Planting, and Nice Neighbors

MS has taken some things away from me, or the ability to do some things. A little over two years ago, we sold our two-story home and bought a ranch that is on 1.25 acres. A few months after that, we bought a riding lawnmower. I mow the yard.

That lawnmower has given me so much pleasure! I have a responsibility to do that I absolutely love doing. When I'm on the mower, I have a sense of pride and I have a whole lot of fun. Once I mow the front and sides, then the fenced-in part in back (Montana's yard), I get to do the "back 40". This is a huge part with slopes. Have you ever mowed going down a slope? Sometimes I pretend I'm on a rollercoaster, let it rip, and yell all the way down! It's given me back a little bit of myself that had I lost.

If it ever stops raining, we are having a landscaping company come to do some work. I'm having small gardens dug in the corners of the fence. I've got seeds from Burpee waiting to be planted. Flowers and herbs and carrots for the gardens, flowers and herbs and patio tomatoes for the deck. I love growing things from seed.

Our next-door neighbor has put her house up for sale. She has a two-story home, and has lived in it for 30 years. But her health is bad and her husband died last year, she said the home is just a house now that she can't keep up by herself. We will miss this neighbor. When we moved in, she brought over a pot of stew. She's like that. The neighbor across the street (also a sweet woman) has moved to another state and is getting married. She has rented out her house to a young girl. Haven't met her yet, she just moved in this weekend. She planted some flowers. I hope she's nice...and quiet, too!

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.

Introduction To My Disease

This blog is going to be about me and MS (multiple sclerosis). I was diagnosed with MS in the early 1990's, shortly after my husband and I were married. So, he has been through the entire experience with me. Arnie is an amazing husband, friend, and caregiver.

The first symptom appeared as numbness. One day I woke up to find that I was numb on my right side, completely numb. It was like someone had drawn a line down the middle of my body, even the right side of my tongue was numb. A lot of tests were run and two neurologists told me that nothing was wrong with me, that it was all in my head. Finally, I found a doctor who would listen to me. He watched my progress and then sent me for yet another MRI scan. With that, I got the diagnosis of multiple sclerosis.

The years passed. I began to lose my balance more and fall more. My arms got weak, then my legs got weak. I had to start using a rollator (a walker with four wheels) or two forearm crutches to ambulate.

Four years ago I found out about St. Francis Service Dogs, and I applied for a service dog. (See azoyizes.blogspot.com for Montana/Monty stories.) One year ago, I was matched with Montana. He has changed my life, and I love him to pieces.

In October, I developed optic neuritis in my left eye. My ophthalmologist (I've since gotten a new one) diagnosed my problem as dry eye. One month later, I had 48 hours of intense pain and blurriness in my left eye. It was then that I was told I had optic neuritis. In December, my neurologist prescribed a 3-day course of IV Solumedrol (steroids). That cleared up the blurriness for the most part, and the pain.

In December, I developed tremors in my entire body. It became hard for me to even feed myself. I did some online research and found out that they have weighted cutlery, so I ordered a soup spoon, a teaspoon, a knife and a fork. They help. I also discovered that if you use wrist and ankle weights, they will help control your tremors. So, I ordered 1.5 lb weights for my wrists and 2.5 lb weights for my ankles. They also help.

I am determined to keep walking as long as possible. Don't get me wrong, this disease kicks my butt sometimes and gets me down. But, you have to get back up and keep going. I do that with the help of Arnie and Montana.