| 
December: 2009
 I went in for my Rituxan treatment and everything went smoothly. I take 700mgs of Rituxan and it takes about two - three hours. I've been going every three months. We're going to try every 16 weeks next time. We'll see if I can spread out the treatments without falling apart. I'm still off Prednisone and all other drugs. It's really nice.
I went in for a breathing test and my lungs, or I should say the muscles around my lungs, are stronger than ever. The breathing exercises that I've been doing are still paying off. I do breathing exercise everyday at yoga. Yoga has helped me is so many ways. I would highly recommend it to anyone dealing with a health issue of any kind. Yoga is not about sitting in lotus or getting you feet behind your head. It's really about the breath. Yoga has taught me to be a calmer person all around and I really think it has help me get healthier over the years.
 Right now I'm feeling great, I'm strong and I have a lot of energy. Most of the time I don't even think about my illness and that's an incredible feeling. For so many years everyday I was in pain or felt bad. It was always something but now I just wake up and off I go. I'm so grateful everything has turned around. I feel very blessed. I'm very grateful I found the right tools to help me get through all this. With the help of yoga, eating right, and Rituxan I have my life back and it's better than every...
Cheers to a Happy and Healthy New Year!
November November was a very busy month for me. At work I was working on four big projects that needed a lot of my attention. The first project required me to fly back and forth to San Diego a few times. I was producing a video for an optical lab. On top of producing the video in San Diego I had three photo shoots; two in Connecticut and one in Dallas . On all three I was in charging of the styling. Styling involved finding the right locations for the shoot and providing all the wardrobe and props to be used in the shoots.
My job is really in sales, specializing in the marketing needs of manufactures in the optical industry. However, I take on whatever needs to be done at the time (it's that type A personality). Do you remember that commercial in the late 70‘s or early 80‘s of the women that brings home the bacon and fries it up in the pan...that's how I feel sometimes at work. I sell the job, produce the job, and sometime have to help the accounting department collect payment for it. I guest in times like these, I should just be happy I have a job!
Having four big projects so close together is a lot to take on for anyone person, let alone someone dealing with health issue. I didn't want to get sick so I made sure I got plenty of rest and a little yoga every day. I also made sure I ate all the right things too. I stayed focused on the task I was working on and tried not to be distracted by what else needed to be done, just what I needed to get done that day. It all worked out. All my projects got finished and everyone washappy, including me, and I'm not an easy one to please.
 In the middle of all this chaos I pick up a puppy in Dallas . When I flew to Dallas for the photo shoot I took an extra day and went to visit a Shar Pei breeder that I have been talking to for a little over a year. Her name is Linda and she let me know that my little Shar Pei puppy was eight weeks old and he was ready to go home. Chris and I have been planning on getting a puppy for some time, however the timing had to be right and one had to be available. Well the timing wasn't perfect but our baby George was ready to come home and nothing was going to stop me from bringing him home. Linda had been emailing us photos over the past eight weeks and I just couldn't stand it any longer. I was so excited. I did a lot of research on Shar Pei breeders before I choose Linda. She is one of the best. As our vet once told me “these dog have a worse immune system than you!” He's right about that. That's why I looked for a great breeder. I lost my Lewis after eight short years and Abigail after just six and a half years. Abigail was a rescue who had a lot of health issues. So we decided we would find a breeder that had a good track record with long living dogs. Of course you never know what could happen but at least we gave it our best shot. Long live George!!!
When I arrived at Linda's place I was so excited. When I walked into the house she had four adult Shar Peis running around and I knew right then I was in heaven. They were all beautiful looking dogs and most of them were show dogs. Then she brought out the two puppies; George and his little sister and oh my God how cute they were. I sat down on the floor and just played with everyone. I had dogs all over me and it was great! you really have to be a dog person to understand.
When it was time to pack up my little guy Linda gave me a little toy that had everyone's scent on it and I had a blanket that I rubbed all over everyone so he would have the smell of his family and off we went. George and I spent the night at a hotel as our flight was the next morning. I spent most of the night on the phone with Chris telling every little move George made. Chris was just as excited as I was. The next day I played with George outside of the Dallas airport for two hours until he couldn't keep his eyes open another second. I placed him in the dog carrier and ran to check in. George slept the entire flight he was the perfect pet onboard. Chris picked us up at the airport and we all headed home.
The last two months we've had a great time with George. He's such a special addition to our family and I couldn't be happier. How can you not love this face!!!
September-October, 2009
 Chris and I took a few days off around Labor Day to take our boat up the Hudson River for a little vacation. Every time we take this trip we find something else to love about cruising on the Hudson River. This year we found the Hidden Marina and it was exactly that. We even passed it the first time we went by, hence why it's called Hidden. It was a perfect place to stay. It was beautiful, incredibly peaceful, and it was walking distance to the town of Kingston . Kingston was a thriving town back in 1777 when the Hudson River was a major route for the transportation of people and commerce. Today it has small shops and restaurants that cater to the summer tourist. It's a little on the quiet side but that's what we like about it. Kingston sits at the mouth of the Roundout Creek and the Hudson River, so it's very protected. We had a wonderful time and we're planning on going back next summer too.
 We spent about five day on the Hudson exploring the little towns and marinas along the river. The last day of the trip we called Chris' son Kevin and his family and asked them if they would like to meet us in the city at the 79 Street Boat Basin for a boat ride. We though it would be fun to boat around Manhattan . It was a beautiful clear day, perfect for boating around the city. I have to say it's very special to see the Statute of liberty from your very own boat. After lots of photos of the city we headed up the East River, into the Long Island Sound and on to Connecticut.
 I went in for my Rituxan treatment this month. I'm back to every three to four months. I tried to go six month without the drug and it didn't work. The thought of only taking this drug two times a year sounded great to me, unfortunately, at five months my coughing started and I was feeling weak all over. I went in for the treatment and a few weeks later I started feeling good again. So my doctor and I decided to go back to every three months. I guess taking it four times a years isn't so bad. Rituxan is the only drug I'm taking. I'm so happy to be able to say that I take no pills in little orange bottles whatsoever. I've come a very long way over all these years.
This month I checked into a spa/retreat for seven days. It was heaven. I went to N.I.A.M, The National Institute of Ayurvedic Medicine. Ayurvedic Medicine has been around for thousands of years in India . I find it very interesting. It goes hand in hand with meditation and yoga. I've had so much success with yoga over the years, I figure I should give Ayurvedic a try.
I signed up for a seven day Panchakarma treatment. Panchakarma is a deep-rooted removal of stresses and toxins. The treatments can be done up to three times a year at the changes of seasons. Panchakarma helps maintain or helps restore balance in one's health.
I arrived in the late afternoon on a Thursday. There were fifteen people at the retreat. Most signed up for the four day package. I was one of five who stayed for a full seven days. We spent the afternoon getting to know one another then we had dinner. All our meals were amazing Indian food without all the crazy spices. My schedule for the week went something like this.
• 5:30AM we had a wake up call
• 6:00AM Yoga for an hour
• 7:00AM Breakfast (fruit only)
• 8:00AM Free time
• 12:30 - 1:30 Lunch
• 1:30PM Free time
• 5:00PM Meditation
• 6:00PM Dinner
• 7:30PM until bedtime we sat around and talked with the doctor about all kinds of subjects, from personal to medical
When was the last time you got to talk to a doctor about whatever interested you for hour upon hour! Dr Gerson is an incredibly interesting person. He holds several degrees and is one of only two physicians in the US to complete formal training in both conventional an Ayurvedic medicine. He understands modern medicine and that's what makes him so special.
 The first few days I slept when I had free time. It was amazing how tired I was. Then I started to come alive and take hikes in the afternoon. A few of us walked along this beautiful lake. It was very peaceful. About day five I started to notice how relaxed I was. I didn't have to worry about anything. I didn't have to think about food it just appeared and it was amazing. I didn't have to think about work, waking up, or anything. Everything was on a schedule and it was easy. It was better than vacation. When you're on vacation you have to make plans all the time; where are we going to eat, what are we going to see, and so on. On this retreat everything was done for me. All I had to do was show up... it was great! It was seven days of a balanced environment, away from my busy life and all my responsibilities. It helps you break the old patterns and stresses of your day to day life.
 My daily treatments started out in the steam shower. Then I had a Abhyanga (full body) oil massage with two therapists who synchronize their strokes and massage circulatory channels and marma points. The oils/herbs are chosen according to your body type. After the massage I had a Shirodhara (Third-eye drip). Shirodhara is a continuous flow of warm oil. It's very relaxing and the oil is amazing in your hair. Then I went back to my room and had to give myself a niruha bostis (enema). Niruha bostis is an oil/herbs enema. Bostis are not like the enemas you take when you go in for a colonoscopy. They don't really make you have to go to the bathroom.
After seven days of this I felt amazing. I also lost a few pounds too. I would highly recommend a seven day Panchakarma treatment. It's a great way of balancing out your body and mind. July-August, 2009  July 4th Chris and I celebrated our fifth wedding anniversary with family and friends. The last five years have gone by so fast it’s hard to believe. The long weekend started out at the airport picking up Anita and Jessie (Anita and I went to first grade together). They were flying in from California. They came out a little early to enjoy the long weekend and to help us get ready for the party. It was a four day weekend celebration of firework on the beach, boating around the Long Island Sound, partying in the backyard with sixty or more friends and we even found time to go to a Yankees game in the new stadium. It was a very special time. A weekend we’ll never forget.
It’s hard to believe we’ve been married five years. I remember the wedding like it was yesterday. The one thing that is very different is my health. On our wedding day I felt great, however, today I feel a thousand times better than that day. I think when you’ve been sick for a long time you forget what feeling good feels like. The strange thing is for the first time in twelve years my illness isn’t the first thing I think of everyday. Yes, my body is stiff in the morning but I’m sure some of that has to do with the fact I’m forty six! Once I take a hot tub I’m ready to go. I feel like I did before I got sick. I tire out easier but for the most part I’ve been feeling really good.
 I feel like I'm one step ahead of this illness instead of three steps behind it. The anemia a few months ago was a set back, a reminder that I’m not as healthy as I think I am. It is also a reminder that I need to keep trying to do everything I can to stay as healthy as I can. Even though I feel good I still need to keep eating the right diet and following the right exercise program.
Over the last two months I’ve been traveling a lot for business; LA, San Diego, San Francisco. The trips back and forth took their toll on my health. I came down with a cold and needed antibiotics to clear it up. I was ignoring the symptoms and over doing it and my body wasn’t happy. Symptoms are like warning lights in a car. If you ignore them you’ll have problems down the road. When will I ever learn!
 In September I’m taking a week off and checking into a spa, if you can call it a spa. I’m going to The National Institute of Ayurvedic Medicine. Ayurvedic Medicine is traditional medicine native to India.
Dr. Gerson, who runs the institute, hold a degree in both Ayurveda and conventional medicine. I’m going in for a Panchakarma treatment.
Panchakarma is a detoxification procedure, a cleansing therapy that is recommended at the change of seasons in order to restore balance in the body. Over the years I’ve tried many things, however, this is the first time I’ve checked into a place. I’m really looking forward to it. I’ll keep you posted on how I feel after the treatment.
June, 2009
 Chris and I few out to California for eight days. We went out to visit my family and to have a Celebration of Life day for my mother who passed away last December. My two brothers and I felt she suffered so much in the end that we wanted to do something special for her. My mother had lung cancer that moved into her bones. I spent as much time with her as I could her last few months. She lived in California and I live in Connecticut. I would fly out for three weeks at a time then fly home for a week and then go back. I'm very lucky to have a job that allowed me to do that. It was a special time with her that I will always cherish.
The Celebration day was something new for my family. They were not sure what I was doing but my two little brother trusted me and went along with it. We grew up Catholic and we have always had traditional funerals. A few years ago one of my sister in-laws step mother passed away and her family hosted a Celebration of Life day that was the first one that Chris and I attended. I remember telling Chris that's it, from now on forget the funerals, we're having Celebration days.
 We had the party on June 6th at my brother's Don's new home. He's been building this house for over two years. Iit started out as a remodel then ended up being a tear down. My mother was very excited about it. I wish she could have seen it finished. The house sits on a piece of property that Don inherited from my grandfather years ago. it was part of a large ranch. The house is beautiful. It's surrounded by mountains with a view of his vineyard. It's where we grew up. My mother's house is just up the road and I own a piece of land across the street that someday we will do something with. My grandmother use to call it God's county.
 The party was perfect. The house was finished the day before the party. There's nothing like breaking in a new house with over one hundred people. Every one came, cousins we haven't seen in years, aunts and uncle, and tons of friends. I put together a video of my mother and we had poster boards filled with photos of her at every stage in her life. We had all kinds of food and great wine, after all we were in the Napa Valley. It was a perfect day. We ended the party with a toast to her as we passed out cowboy cookies (she loved baking cookies).
The next morning we scattered her ashes on the ranch and said our last goodbyes. It was very beautiful I think she would have been happy with it. Cheers to Celebrating one's life... live each day to the fullest. May, 2009 I've said this before and it's so true. When you have an autoimmune disease you're like a leaky hose that's been left out in the sun too long. Once the leak is fixed another one is soon to follow. Once I got the allergies and pneumonia under control I found myself coughing a lot. I though it was a side effect from the pneumonia so I didn't really do anything about it. Then when it persisted I thought it would be best to call the doctors. I didn't want to take any changes.
After talking it over with my doctor we felt the cough was due to my Polymyositis flaring-up which triggers the Pulmonary Fibrosis which casing me to cough. It's something that has happened to me many times in the past. I find that once I get the PM under control the PF will follow. The doctor thought it would be best if I moved my Rituxan appointment up. I was scheduled for a treatment in late July. My last Rituxan treatment was back in December. We were hoping to stretch out the appointments to every six months. It was a nice thought but it didn't work. Last year I was taking Rituxan every three to four months and everything was fine. It looks like if I stretch it out longer than four months I run into trouble.
I went in for my treatment and everything went as planed until my blood work came back. My iron levels were extremely low…the anemia was back. I guess eating meat didn't help. I was a vegan for over thirty years and a lot of people thought the anemia was because I hadn't eaten meat. I have to say the thought crossed my mind more than once. So I started eating meat about a year ago a few times a month. The doctors didn't think a change in my diet was going to make a difference but they didn't see any harm in trying. My anemia is a side effect of years of being on chemo drugs (11-years). Now I know without a doubt that being a vegan has nothing to do with my anemia. I'm so happy I don't have to eat red meat anymore. I'm sure the cows are too.
I was scheduled for five infusions at St Vincent 's over a five week period. I've taken three treatments, two more to go and so far no problems. A few years ago I had my first treatment of Iron and went into anaphylactic shock. The drug I took that time was INFed. Now I'm taking Venofer and I haven't had any problems.
A few weeks after taking the Rituxan my cough stopped and life got back to normal. When I get into a coughing attack it's awful. Most of the time I cough until I throw-up, I know,it's gross. It's amazing once I get sick the cough stops and everything is back to normal until the next attack. The littlest things can set it off. Things like eating too much, moving around too fast, a change in room temperature or going from outside to inside. I'm just glad it's over. It's very unpleasant and everyone around me thinks I'm on my last leg. It sounds awful.
April, 2009
 We celebrated Easter Sunday with Chris' son Kevin and his family. The two grandsons ran around the yard looking for Easter eggs and their hidden Easter baskets. The dogs followed them not knowing what all the excitement was but knew something was up. In the end all the eggs were found and Leo had the pleasure of getting his very own egg to try. After sugaring up the two boys and sending them home Chris and I enjoyed a relaxing afternoon.
 A couple of weeks after Easter all the vegetation started to come alive and so did my allergies. I had been somewhat allergy free for the last few years. I think the daily prednisone was keeping my allergies at bay. Since I'm off prednisone my allergies went into overdrive. I was really trying very hard not to go to the doctors. I tried everything they sell over the counter and nothing seemed to work. I finally gave in and went to the doctor's for something stronger. Guess what she gave me, yes, you guessed it, prednisone! It worked like the miracle drug it is. I felt better immediately. Along with the prednisone she gave me 60mgs twice a day of Fexofenadine ( Allegra) and 50mgs a day of Fluticasone Propionate Nasal Spray ( synthetic steroid of the glucocorticoid family). A week later I found myself back at the doctor's office this time for a cough. I had early stage pneumonia. The doctor gave me a week's supply of antibiotics and that seamed to fix the problem. Wow! What a spring. I'm starting to feel much better.
 In the mist of all this we had our KIT meeting (Myositis Keep-in-Touch) in CT. A group of us with Myositis get together for lunch a couple of times a year. The meeting theme this time was trying something new. For years I've been running around telling people that before Myositis I used to rock climb, mountain bike and go to the gym in the same day. Other people in the group talked about playing tennis, golfing and running and how disappointed we are that we cant do those activities any more. We talked about the fact that we're older and we have to listen to our bodies and respect what our bodies can do at middle age. Let's face it we all try to do all the things that we use to do when we were in our twenties. Here's a news flash, we're not in our twenties anymore. Sometimes we think that Myositis has caused our limitations when it's really just getting older. So we agreed to try new things and not be upset with what we can't do any more but be excited about the new adventures ahead of us. So the group is going to try something they haven't tried before. Some of us are going to try new foods that we've never tried, some of us are going to take up bird watching from our deck chairs and all of us are going to learn to let go of the past and start to enjoy the moment because that's really all we have.
March, 2009  I was very honored this month when a friend of mine dedicated his participation in a charitable climb of the Metropolitan Square Building in St. Louis , Missouri to me. The event was “ Master the Met” and it benefits the American Lung Association. His goal was to climb 42 flights of stairs and raise $1,500. He climbed all 42 flights and raised $2,003. Not only did John climb the Met, he ran a 5K race on St. Patrick's Day. John is an inspiration to all of us because, are you ready for this, John has Polymyositis., John and I met several years ago when he came across my website. He has inspired me in many ways by his ability to be very active while he battles Myositis. Thanks John you're a very special friend. 
My life is like ground hog day. If you've read my updates you'll know that every March I'm off to a trade show in New York City . This year was no different. I guess that's a good thing in this economy. This trade show always seems to coincide with medical challenges for me. Over the years I've dealt with an IV line, with Pneumonia (followed by hospital stay), Shingles, and a broken back (getting around on a cool scooter). This year as I was packing I realized I'm feeling great and needed no additional paraphernalia. What a great feeling!
Every night I took clients to dinner. One evening I had a brave client who agreed to go to a raw food restaurant. The food was amazing! We had the sampling menu and each dish was better than the one before, especially when dessert arrived. I wish these types of restaurants were around during my 30 years as a vegan. One of the benefits of raw food is that none of the nutrients are lost during cooking. If you have the opportunity to eat at a raw food restaurant…try it, you won't be disappointed. The restaurant we went to was Pure Food and Wine. You can visit their website at www.purefoodandwine.com  My ability to do yoga has really improved over the last couple of years. I can stand on my head for 10-15 minutes at a time and this month I was able to get into a shoulder stand lotus. I was so excited to go home and show Chris. He took the pictures.
End of March, beginning of April is when we start getting our fish pond running. We're amazed each year that the fish live all winter under a sheet of ice with only a small hole in it and no food for months. This year when the ice melted two of them looked like they were not going to make it. I went as far as digging holes for them, but Chris told me not to rush it but to let nature take its course. I was in a panic and called AZ Pond in Pennsylvania and told them the two fish looked really bad and asked if there anything we could do. They sent me a jug of stuff and a few weeks later the fish were fine. I told Chris next time I feel bad I'm jumping into the healing waters of the fish pond. 
February, 2009
 Last month our hot tub froze up and died. Our new hot tub arrived a few weeks later and I can't tell you how happy we were to see it. We love waking up in the morning and enjoying our coffee in the tub before work, and there is nothing better than ending a long stressful day soaking in the tub before bed. The hot tub relaxes all my muscles, and it's has been very therapeutic for me. Life wasn't the same without it.
 This month we went to St Thomas for Chris brother's 50 th birthday party, and wow what a party it was. Jim and his family moved to the island about six years ago. They built a beautiful house over looking the ocean. It is truly paradise (paradise is the name of the house too). The party started when we landed and ended when we flew home. It was a great trip and no accidents this time. Two years ago when we went down for a short tip I was in a boating accident and burst my T-12 and spinal canal. It was a trip I would like to forget! However, despite how bad it sounds, every day I'm just grateful I was able to walk away without any permanent damage. Today I have no back issues at all. I have yoga to thank for that.
Whatever black cloud that was hanging over me for the last ten to fifteen years has seamed to drift away. My Polymyositis and Pulmonary Fibrosis are both under control and I'm very happy to say I've been off prednisone for eight months now. The only drug I take is Rituxan every six months. I really can't believe how great I feel every day. I think the biggest challenge through all this was learning to not over do it, but to rest, rest and get more rest. I'm not the type of person to sit on the sidelines and watch life pass me by regardless of what crisis is going on with my body. Over the years Chris and I have traveled a lot and we have done some wild things but we know where our limits are and we respect those limits. I think that's key to staying healthy, finding and respecting your limits. That's what keeps us going.
When we returned from St Thomas I took a five day course that I thought was on how to reduce stress and learn to breath. However, it was so much more. The course was “The Art of Living”. It was such an amazing experience is so many ways. The course is not only about breathing techniques, it also teaches you practical wisdom for getting the most out of your life. It was a great experience and I highly recommend it. The website is www.us.artofliving.org . Enjoy!
January, 2009
Wow, it's hard to believe it's already 2009; time sure does fly by. Life is slowly getting back to normal for Chris and me. The past three months I spend a lot of time in California with my mother and family prior to her passing away in December of cancer. My mother wanted her ashes spread on our family's ranch so this spring Chris and I will return for the memorial. We found a beautiful redwood tree that over looks my brother's vineyard and we're going to put a memorial plaque on this magnificent tree so we'll always have a special place to visit her.
 When we returned home from California we had two little one's that were waiting for Christmas at Mom Mom's and Pop Pop's house, so in January we celebrated Christmas with Harrison and Emerson. It didn't seam to bother them that Christmas was over weeks ago. I think as far as they're concerned Christmas can come every day regardless of the month. I have to say it's a great idea to celebrate after the holiday, the sales are great, and if you want a Christmas tree…they're FREE!
Chris and I enjoyed having our morning coffee everyday and at the end of a long day there is nothing better than soaking under the stars. I think my favorite time in the tub is when we're having a blizzard. There is nothing better than to soak in 104 degree water when the wind is blowing the snow and trees around. Yes, it hard getting from the house to the tub but once you're in, it's worth it. The tub has really helped me over the years with my sore muscles due to Polymyositis. I can't live without it so we ordered a new one. We should have it in a few weeks. I'm counting the days…
This month I went to see my pulmonologist and my rheumatologist and both doctors were impressed with my health. My lungs improved slightly and my strength has never been better. I'm running on the treadmill, swimming and doing my daily yoga, but it the Rituxan that is really working. I'm off all other drugs and at this time the only drug I take is Rituxan which I take it every six months. It's taken me a long time to get where I am today and I'm thankful everyday for my health.
 This month I turned forty-six and the day of my birthday my optometrist called to tell me my new glasses came in. It was very appropriate timing. These are my first pair of progressive lenses. Progressive lenses allow you to see far and near and they help with presbyopia. Presbyopia comes with middle age (that's me). People experience blurred vision at near points when reading or looking at anything up close. There's no getting around it… it happens to 99% of us, with Polymyositis or not. So I was officially welcomed to middle age! Happy Birthday!
|
