Monday, September 6, 2010

Feeling Better

I was beginning to believe that my MS was going to stay at the lower level it was after all the steroids infused and taken. However, I am slowly getting back to my baseline.

My balance is still off, but home physical therapy is working on that. And, I'm faithfully doing my exercises.

My friend Julie, whom I've known since 1st grade, is coming for a visit Sept 19. She will be here for a week. Arnie will be on his 2-week Sutent break by then, and hopefully will be free of all of his symptoms. We plan on taking Julie up to Lexington by way of the Blue Ridge Parkway, which is an awesome drive. Rest and relaxation is top on the list.

October, we're going to NJ to visit my BIL and SIL. The four of us are going to rent a limo and go to New York City and to Brooklyn to see the kids and grandkids. NYC is top on my Bucket List. For $500, which we'll split, we get a limo and driver for 15 hours. Talk about traveling in style! We were worried about taking Montana on the train, then Rocky came up with this idea. Can't wait!!

November, my friend from Tucson is coming for a week. Gabrielle is interested in the Civil War, so Arnie has planned a 2-night trip to the Fredericksburg area for us. He's hiring a private guide to take him and Gabrielle around (I'm staying at the hotel with Montana--not a buff). But, there will be lots for me to see when they return. I haven't seen my friend in six years, but we talk on the phone every Sunday. Can hardly wait to see her!

Thursday, August 26, 2010

Went Downhill and Can't Get Back Up

I beginning to believe that my MS took a turn for the worse and I'm afraid that I'm not coming out of it. I had a 3-day course of IVSM the beginning of August. The following week, I had my 12th Tysabri infusion. The following week I had another course of IVSM, and now I'm in the middle of a 2-week Prednisone taper. My tremors, balance, leg weakness and fatigue are all bad.

Through Gentiva, the home health organization, I am now receiving home PT. Their plan is called Safe Strides, and it has to do with balance between your legs, feet, ears and eyes. Tuesday, I had a 2-hour assessment with my PT. Today, she is going to begin working with me. I will have two sessions a week for eight weeks, then I'll be reassessed.

I also will be starting back with my Yoga class next Thursday. We took a break during the summer, and are hoping that we have enough people show up Thursday to make a class. I've taken the MS Yoga for over a year now, and I think it is remarkable. Although, whereas Monty could help me get up off of the floor after relaxation, my legs are too week now to be able to do that. I'm going to need him and another person in class to help me up.

I'm thinking seriously about getting a small scooter that comes apart and will fit in the trunk. I want it mostly for around the house, though. I'm now using my Rollator to get around the house, but I still fall, even with the Rollator. I figure a scooter will be a help and not a step backward.

One good thing, the Celexa is working and my mood is pretty even. I haven't had crying jags or gotten mad at anyone.

We had our son, daughter-in-law, and two grandsons here for a long weekend. Things got a little hectic, as the two neighbor kids came over every afternoon to play, eat, and have fun. A couple of times, the noise and commotion got to be too much for Monty. Every once in awhile, he would go off and lay in the hallway or the kitchen. We had a wonderful time talking, laughing, and playing. They've moved from South Africa to Brooklyn, NY. They took the train from Brooklyn to Lynchburg (a little over an hour from where we live), and we picked them up at the train station. We have plans to meet them in New York City in October, and they want to come to Salem again in December. It is so very good to have them here!

Saturday, August 14, 2010

Incompetent People Rant

We have had a very busy, but frustrating week.

First off, I was to begin home physical therapy yesterday (Friday) morning. Thursday, I got a call from the therapist telling me that they were still awaiting approval from my neuro for physical therapy. I told her it was my impression that his office had sent in all the needed paperwork. She replied that they sent the orders for evaluation (which was done), but that they were waiting on orders for the therapy itself before they could begin. I told her to come out Tuesday, that I was almost positive the office would get the paperwork to her company by then.

My DH was to receive a shipment of two bottles of Sutent, the drug that he is supposed to be taking for his Stage IV metastatic renal cancer. He called the drug manufacturer, who is supplying the drug to him, Thursday. He was told that the woman taking care of the prescriptions cancelled the 50 mg prescript like she was supposed to do, but failed to turn in the two lower dose prescriptions. The person he spoke to said that they could mail the pills out Friday, and that he would receive them Monday or Tuesday. He mentioned that he was supposed to start the pills last Tuesday, so that would be an entire week wasted. So, they shipped them Friday overnight, and the package arrived early this morning.

I, and probably the rest of you, are receiving slip-shod help from a lot of the work force nowadays. It is pathetic, worrisome, and just plain makes me spitting mad. It seems that a lot of people out there don't care about doing their jobs correctly. You would think that in today's economy, people would do their jobs like they're supposed to do them in order to keep them. I don't know. What's your opinion?

Tuesday, August 10, 2010

SoluMedrol and Home PT

First of all, I had a 3-day course of IV SoluMedrol last week because my MS was getting worse. It helped with my energy level and a little bit with leg weakness. The RN used something called a Mediball. It was the neatest thing. The solution is in a small ball, which is pressurized to deliver the medicine over a 1-hour period. The beauty is, you can stick it in your pocket and walk around--you are not attached to a pole IV set-up.

While the RN was here, she mentioned that I could get Physical Therapy through their company (Gentiva) to help me with my balance and walking. This morning, a physical therapist came out and gave me an assessment. She will be coming twice a week for four weeks, giving me tips and exercises to do on my own. Then, the company has something called Safe Strides. This is a program that works with your eyes, your ears and your body, to help you walk and stand better.

I have a good feeling about this. I've been falling more often, and running into walls and doorways. Of course, the tremors don't help my walking any.

I feel like a real mess!

Because of stress and the hot weather we've been having, I had an MS flare and I was getting depressed--crying, feeling very sad, and getting angry. My PCP started me on Celexa, which actually is doing a very fine job leveling out my mood. The only side effect I've gotten is dry mouth, which is no big deal.

Tuesday, August 3, 2010

Tysabri and SoluMedrol, and My Husband's Cancer

Things haven't been going good here at my house. The Tysabri was holding me steady at my baseline (poor, but liveable). But, I've been under a lot of stress and we were in an awful heat wave for two weeks. I guess those two combined gave me an MS flare. Everything got worse.

I called my neuro, who ordered a 3-day course of IV steroids. My veins are becoming scarred and they roll and are very hard to infiltrate. Home health came, and the nurse tried one arm and the vein blew. She told me that she only allows herself two sticks before she calls in another nurse. That's the way the nurses are at my infusion center. Luckily, she got the port in my left arm and it stayed. They use these things called medicine balls. They are wonderful. The ball is pressurized to deliver SM over a one-hour time period. They're small, and you can even put it in your pocket and walk around with it. However, there was no time to do that, as the nurse had to ask me 1,000 questions. She was super nice, though.

My DH was started on a new cancer fighting drug. The side effects are bad and there are many. After the 10th pill of a 28 pill cycle, he had fatigue to where he could barely walk and shortness of breath. He's sleepy but can't sleep. He's hungry but can't eat much.He's having diarrhea, mouth ulcers, and chills. Friday, I told him to stop taking the pills and call the oncology nurse Monday. He called, she talked to the doctor, and then she called back and told him to stop the medicine for one week. They will probably put him on a lower dose, 20.5 mg I think. She did mention that some people get the side effects, even on the lowest dose. Sutent is what it's called, and it restricts the growth of blood vessels, hopefully shrinking the lung tumors. There are two more chemo drugs for his disease, then that's it. Unfortunately, his type of cancer is incurable. They can only hope to control it for a time. But if his quality of life is as bad as it was Friday, he may elect to discontinue all chemotherapy and take his chances, living a better life for as long as possible. I'm behind any desicions he makes. I would do the same if it was me going through this hell.

We had my BIL and SIL here for the weekend, and we had a wonderful time with them. By Sunday, DH was feeling better. Yesterday was better still. Oh, the worst symptom with this drug is what they call hand and foot syndrome. The skin on your hands and feet begins to break down and you develop tears, cracks and ulcers, to where you can't walk. That usually happens in the fourth week. You get two weeks off, then they repeat the cycle.

Saturday, July 17, 2010

MRI, Tysabri, and Demo

I had an MRI scan done this past Monday and the results were "no change", which is good. However, something is wrong with my veins. Now, whenever I get an IV, they have a very hard time putting one in. It felt like she was digging with an ice pick with the IV contrast needle. I should have said something, but I didn't. My head shakes so badly, even taking two extra Klonopin, that they have to put these big, thick pads over my ears before they put my head in the "helmet". It works, though. I also asked for earplugs, and nurse ice pick said I shouldn't need earplugs with the pads. I told her that I still wanted them, so she huffed off to get some. Needless to say, she wasn't the nicest person I've had the pleasure of encountering!!

Friday, I had my Tysabri infusion. I told my nurse about the ice pick nurse, and she said that I should have nicely requested that she try another vein instead of digging around in one spot. Since I'm there for nearly three hours, I told Arnie to take Monty home, and that I would call him when I was ready to go. We live five minutes from the infusion center. Anyway, when they got home, Arnie said that after he took off Monty's leash and vest and got him a drink of water that Monty went and laid in the hallway outside my bedroom and wouldn't budge from there until it was time to pick me up. Guess I'll let him stay with me from now on.

My husband and I are Reform Jews. I mention this because I got a call from a friend who works at the Temple where we are members. They were having summer camp, and she asked if I would do a demo for them. This was last Wednesday. There were 30 kids, ages 3-1/2 to 11. The demo went real well, except that I forgot the slices of string cheese that Monty will do just about anything for, and which I use during demonstrations. At one point, I had him do his commando crawl, then showed them how he helps me up off the floor. They clapped. Then, we did something that was outstanding. Arnie was sitting in the back of the room. I took Monty off his leash and told him to get daddy's hat. He trotted down the steps and down the isle, looking neither right nor left, picked up the hat and brought it straight back to me. We got a standing ovation for that one!

Saturday, July 3, 2010

My Guys

We had a wonderful visit with our two sons, dear daughter-in-law, and three grandsons last week. Scott, the youngest, and his family have finally moved back from South Africa. He is now teaching at a private school in northern Mass, then they will move to Brooklyn where he got hired as head of the Science Department at a posh private school. The boys will be able to attend the school, which is fantastic news.

Arnie and I went up to Charlottesville to meet his new oncologist. This is a very nice man, and we both liked him a lot. He (Arnie) will be starting on a chemotherapy drug on or about July 20. We are awaiting news on help for paying for the drug, as it's over $7,000 a month. It is in pill form, and has the side effects of causing bleeding from the nose and other orifices, plus it makes your hands and feet hurt, sometimes so badly that it becomes hard to walk. Then, they lower the dose. He will take this four weeks on and two weeks off.

The bad news is, the cancer he has--Stage 4 renal cell cancer--is incurable. They can hopefully prolong his life with chemo, but he will have to stay on one kind or another for the rest of his life. I am behind him all the way. I'm happy that he's decided to try another chemotherapy drug, but I will understand completely if he decides that his quality of life has deteriorated too much and he doesn't want to take any more chemo.

We went to see Othello yesterday at the Blackfriar's Playhouse. The building is a replica of Shakespear's indoor theater. It was fabulous! We're going to try to go maybe every other month to see a play there.

Next week, Arnie has scheduled a private guide to show him places that General Mobey was. We will do other things, but that day Montana and I will be on our own. We'll hang around the hotel, and take walks and hopefully sit outside. However, the weather here has been so darn hot--we had three straight days of 100 degrees! No rain in sight, so I'm having to water every day. I sure can't do as much with a water hose as a good soaking rain can do for my gardens.

Monday, June 14, 2010

Dear Husband

My dear husband had his CT scans done, and we met last week with his oncologist. Everything has stayed the same except for one nodule that has grown from 4 mm to 11 mm. The oncologist recommended waiting two months and then repeating the CT scans to see if there was any more change. My husband told him that we want a second opinion, so he's arranged an appointment with a renal oncologist at the University of Virginia next week. We both will feel better getting a second opinion.

Monty's trainer rode 150 miles in the MS Bike Ride in Charlottesville last weekend. She said that the second day, she nearly gave up after 50 miles because it was so hot and humid, but that she kept thinking about all the people with MS who have Saint Francis service dogs, and that kept her going. She put our dog's pictures on her handlebars. We had a party for her today. Way to go, Connie!

Our two sons, DIL, and three grandsons will be arriving here Wednesday for a short visit. Our son and his family are moving back from Johannesberg to Brooklyn, where he got a job as the head of the Science Department at an exclusive private school. I always wanted to see Brooklyn. It will be so good to see them again!

I'm doing okay. My orthopedic surgeon released me to use our riding lawnmower, which I did Sunday. Our dear neighbors have been taking turns mowing our grass since my surgery, and it sure felt good to be able to get out there and do it myself for a change. Didn't bother my elbow at all.
These are some of the hollyhocks I planted last year in remembrance of my mom, who always had a bunch growing.

Friday, May 7, 2010

Cubital Nerve Decompression

I had my elbow surgery done Monday, May 3, and everything went okay. The surgeon discovered cartilage covering and compressing the ulnar nerve, which he removed. This was good news, as it could have been lots worse.

One problem was that it took four sticks from two different nurses before they got my IV inserted correctly. Evidently, from all the IVs I've had over the years, the veins in my hands and arms have become ropy, lump, and nearly impossible.

Everyone was very nice to me. The surgery took about 1-1/2 hours, and I awoke with a splint, dressing, and a heavy Ace bandage going from the top of my hand to just below my armpit. The surgeon used staples to close the 3" incision. I'm to see him this coming Tuesday, when hopefully he will remove the staples, the splint, and most of the dressing. It's a pain in the arse do try to do everything one-handed.

Arnie cooked cream of wheat for supper the first night, as I had to eat bland food. He's in charge of cooking and washing dishes, so we're getting take-out the rest of the week because his cooking skills are very limited! That's fine with me.

Montana has to walk on my right side. I was a little worried because for 2-1/2 years he's walked only on my left except during practice sessions. What a trooper! He is walking on my right like he's been doing it all the time. He knows when what I ask him to do is for real and not just practice. What an outstanding dog he is.

We took him to Virginia Tech yesterday to have his eyes examined by an opthalmology vet. It's a free service offered once a year across the US for working dogs, including service dogs, seeing-eye dogs, police dogs, search and rescue dogs, etc. It's a wonderful thing they do for our dogs. Monty's eyes checked out perfectly normal, thank goodness.

We have a few more trips planned, including one up around Winchester, VA where we'll spend three days seeing different things. For one of those days, Arnie has hired a private Civil War guide to take him to different places in the area. Montana and I will hang around the hotel that day. The other two days, we're seeing things that interest both of us. Next week, we're going to Staunton, VA to the Blackfriar's Playhouse to see a Shakespear play, a comedy that for the life of me I can't remember the name of right now.

Before surgery, I got over half of my seeds planted and all of my plants planted. I've had to water every day, because it's been around 90 and sunny, but everything is looking good and I've already got seeds sprouting. I want to get a chickadee/nuthatch birdhouse, because they eat aphids. Last year, my hollyhocks and one other section of flowers were overrun with aphids. My neighbor is going to build bat houses and swallow houses to see if he can keep down the mosquito population. Maybe he'll build me a birdhouse, too.

Peace to all my friends.

Friday, April 30, 2010

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

Sunday, April 11, 2010

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.

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!! :)

Wednesday, February 17, 2010

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.

Monday, February 15, 2010

The Good, the Bad, and the Ugly

I was thinking back to all the neurologists that I've seen through these past 20 years. I knew something was definitely wrong, when one morning I woke up to find the entire right-hand side of my body numb. I went to my regular doctor who said it probably was stress and gave me some pills. Finally, I got in to see my first neurologist. He wasn't a very nice man. He ended up yelling at me that a person couldn't have "that many things wrong" and I quit seeing him.

My next neurologist came highly recommended. He wanted to do a spinal tap, said he never used anything to numb the area. Like a dumb sheep, I went along with what he said. Well, he missed the first time and had to re-do it. By then, I was laying there sobbing. When he eventually told me that it wasn't MS, that it was all in my head and he had a friend who was a psychiatrist, I quit going to him.

I finally found an internist who was willing to sit and listen to me. He took one symptom at a time and worked with it. He followed me clinically, then sent me for an MRI which showed plaques. What a relief!

My last neurologist was an outstanding doctor and person. I saw him for three years. He diagnosed me as Secondary Progressive, and also agreed that I needed to begin Tysabri. Unfortunately, he moved to another part of the state the end of December.

I'm scheduled to see a new neurologist the first of March. I've heard good things about him, that he takes the time to sit and talk to you, and that he cares about his patients. I sure hope so! At least, all he'll have to do is pick up where my last one left off since I'm diagnosed and on treatment.

I've learned that I don't have to do what a doctor tells me, I don't have to take sh*t from a person just because he has an MD after his name, and I know my body a lot better than they do.

Sunday, January 31, 2010

Falls and Tremors

Ring around the rosies.

Pockets full of posies.

Ashes, ashes

We all fall down!

I fell twice last week. At about one week before my last Tysabri infusion, which was last Thursday, my balance deteriorated and my tremors were out of control. When I was outside picking up after Montana, I fell. He was up on the deck and when I yelled for him to come and help me, he immediately ran to my side to help me up off the ground. What a super service dog! Luckily, I didn't hurt myself in either fall except for bruises.

My balance has since improved since the infusion, with no more falls. I had cut my Klonopin down to 1 mg at bedtime, but then began taking three pills a day because of the tremors. However, I don't know if it's the Tysabri or the Klonopin that is helping with my tremors. It may be both. I'm still not using my forearm crutch, just depending on Montana walking on my left for balance control.

The Tysabri infusion went well. I told the infusion nurse that I was having chills daily, sometimes waking up from sleep chilling. She told me that my hematocrit and hemoglobin were both a little low the last time, and that she would check the results of this week's blood test because I may be a little anemic, which I guess can cause chills.

Salem got at least 12 inches of snow Friday night and Saturday. We're paying our sweet neighbor to shovel the driveway. I was able to shovel half the ramp, the top of the deck leading to the stairs, as well as the stairs. It was exhausting, but luckily the snow was light and powdery. I kept thinking that must be the kind of snow that the skiers love.

I've never skied, but I used to to ice skate a lot in grade school and high school. I've been thinking about buying myself a pair of skates to hang on the wall as an incentive to maybe trying it again when the indoor rink opens back up in September. It certainly doesn't hurt to dream.

Thursday, January 21, 2010

Friends With MS

It is amazing to me the number of friends I have made who also have MS. I don't go to the local MS support group. I've tried support groups in the past, but didn't care for them. However, last year I began going to an MS Yoga class. Most of the people in the class have MS. Our instructor is amazingly kind and very sweet, and we all love her. I met a woman when I went to Yom Kippur services without DH, who has MS and invited me to sit with her. We have become friends. I've made friends at the infusion center, most of whom are receiving Tysabri. Then, there are all of my online friends whom I've never met but we've become close through the forum (NeuroTalk/PsychCentral), which I've belonged to for a few years and have found it to be the best MS forum. I was recently asked to submit my blog to Wellsphere. What a grand feeling that was! Thank you, Wellsphere for wanting to include my blogs, and for giving me a boost!

When Montana moved into our home and into our hearts, I made some of my best friends, support system, and all-around super people through Saint Francis Service Dogs. I was told that when you are partnered with a dog, you become part of the Saint Francis family. Sure enough, you do exactly that. I volunteer as much as I can for them, trying to give back just a little bit of what I've been given.

This led to being invited to join a book group whose members are all Saint Francis people; partners and their dogs, committee members, donators, and Carol. Carol is the most amazing person. She is the co-founder of Saint Francis Service Dogs. I was amazed to be invited to this book club, The Divas. I've always had a love of reading, and I always have two books going, but this is the first book club I've been in. There are two of us with MS, and we have become good friends.

Two years ago, before I was partnered with Montana, my world had shrunken to online friends and my dear friends who live in different parts of the country. I had become a hermit. DH would try to get me to go places, like social functions, and I would beg him to let me stay home. If we went, I would end up against the wall waiting to leave at the first opportunity. I was ashamed of how I looked to other people, walking with a rollator or forearm crutches. I didn't want people to see me like this, and I didn't want the usual remarks of "you look good" or "you're walking better than when I saw you before" or "my daughter's friend's mother has MS". Eeeeek! I can't stand pity, I didn't have anything to talk about to anyone, I just wanted to be in my safe little house.

Montana and the SF people opened up my world again. The first thing I did was get interviewed by the local newspaper. Meg (the reporter and interviewer) and I have since become good friends. Then, I did a couple of demos at grade schools. Those were lots of fun. Montana and I were filmed for a PSA commercial that runs throughout Virginia. I'm on the Outreach Committee, picking up phone messages and passing them along to my boss when people call to ask about getting a service dog.

I have taken a great interest in the outside world again. If the Tysabri continues to work and my balance continues to improve, I'm buying a pair of ice skates next month for when the indoor ice rink opens again next September. That should be something to see, since I haven't skated since 1969!!! I'll be sure and post pictures. However, I want to buy a pair of skates and hang them on the wall as a reminder of what I may be able to accomplish, thanks to my miracle drug.

Hello to all who read my blog, and thank you so much for taking an interest in it! hugs, maryann

Saturday, January 2, 2010

Tysabri Infusion #4

The third time was the charm, as they say. However, after about three weeks some of my MS symptoms returned. My arms got weaker, my tremors became as bad and irritating as they were before. I had my #4 infusion Wednesday, Dec 30. Things have calmed down again. My tremors are slight, and I've got the strength back in my arms.

It's been way too cold to take a walk for awhile now. We're in southwestern Virginia, and right now (4:30 pm) it's 22 degrees with a wind chill of 3 above zero. I haven't been to Yoga class in three weeks, but it is due to start up again next week. I try to do a lot of the exercises that we do in class, which I believe does help.

My husband has seven more injections of chemo left to get through, then two days after they're complete he will have a CT scan to see if any of this worked. He has been through some awfully bad times the past two weeks. I feel so bad, as there isn't much I can do for him except to listen to him when he needs to talk about all of this. Twice last week, we had to sit in the car in the hospital parking lot until he could get his coughing under control in order to drive us home. Twice, he's coughed so long and hard that it has made him throw up. He also has an itching, with no rash, that can pop up anywhere above his waist and last for hours. He has two anti-itch meds and four creams, but nothing works. He just has to live through it until it passes. He is weak, and has to lay down a lot.

If the Interleukin 2 protocol works, then he has to have it again three more times with a month in between each set of treatments. If it doesn't work, then we have to consider his options and make some very, very big decisions. Please keep him in your thoughts, prayers, or whatever you believe in that will send positive and good vibes to him. Thank you for reading this, for following my blogs, and for your support. maryann