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July, 2008
 We started out the month celebrating our fourth wedding anniversary. We were married on the Fourth of July in 2004. We spent the night out on the boat, anchored in a peaceful cove and had dinner under a beautiful display of fireworks. The boat rocked us to sleep and in the morning the water was like glass. It was a beautiful trip and a very special way to celebrate the four wonderful years we've been married.
 Every year the company I work for has a sales meeting with some kind of theme. This year the theme was 1970's hippies. Most of us grew up around that time so we really got into it. Personally, growing up in Northern California , I felt very comfortable with this year's theme. When I was looking through my wardrobe for something to wear it was amazing how many hippie outfit I was capable of putting together out of my current wardrobe. I guess you can take the girl out of Northern California, but you can't take Northern California out of the girl, or at least the hippie part. Basically the sales meeting is a big party and an excuse for adults to dress up and drink a lot. I always sneak out around 9:30PM or so. That's enough for me. My tagline is “nothing good ever happens after 9:30PM”. In the mornings it's always interesting to look around the breakfast table and see who stayed up until 2:00 or 3:00 in the morning. I don't know how they do it…
I'm still prednisone free! It's been two months now. I can't tell you how nice it is to wake up in the morning and only take vitamins. I have no little prescription bottles lying around and I'm not running to the drug store all the time. It's such a freedom. The only drug that I'm taking right now is Rituxan, and I take it every three months or so. I went in this month for the Rituxan treatment, and everything went as planned. The treatment took a little over three hours and I had no problems. My next treatment will be in November. The nurse was surprised I was able to get off prednisone completely. She was even more surprised to see my blood work come back normal. I even have the anemia under control. I'm going to continue doing what I've been doing as it seems to be working.
- Lot 's of rest
- Eating healthy stuff
- Exercising daily (yoga, gym or swimming)
 July is always a month of boating for us and this year is no different. We're always with friends on the water having dinner or swimming in some cove somewhere. One of our very dear friends lives in Northport, Long Island and we're always shooting across the Long Island Sound for a visit. They have a wonderful house right on the water with a dock. It's a great place.
June, 2008
June 2008 was a month I'll never forget for many reasons. June was the first time I was 100% Prednisone FREE… Yes, not even 1mg of it. I even stopped taking Protonix. I was suffering from acid reflux which was cased by taking prednisone for so many years, and Protonix is a drug that helps heal the esophagus. When I stopped the prednisone the acid reflux cleared up so no need for the Protonix. Every morning I get up and only take vitamins, no prescription drugs at all. It's so exciting to be in control again. I'm still going in every three months for my Rituxan treatments, but it's nice not to take anything else between.
 Our garden came alive this month and it was so beautiful. We spent as much time outside as we could. We both love yard work and this was one of the first years I could really get out there and do some work. So many years I just sat by watching Chris do all the work and all I had the energy for was to watch. I worked so much in the yard this year I got poison ivy. Do you want to know what people take for poison ivy? Prednisone yes Prednisone…I didn't take it, I just let it run it course and used every product that you can buy over the counter. It was kind of ironic. The first month I'm off prednisone I some how find a way to need it.
 My dear friend Christie is one of the editors at the company I work for and she is also and author. She's published a few great books. She asked us to model for her website. You have to check it out the web site it's a very fun. If you like romantic comedies you'll love her books. She's been a super friend over the years. She's one of those people that have always been by my side, good times and bad. Christie if you're reading this best of luck on all your books and your new site, I love you…you're the best!
http://www.christiewalkerbos.com  Chris and I traveled out to California this month for two weeks with one of the main reasons being my friend Anita's wedding. Anita and I went to first grade together. I told her the last time I saw her in white was our first communion. I think we were both six at the time. It was such a beautiful wedding and everyone was so happy for them. Anita and Jessie came out to our wedding so it was very exciting to be part of theirs. Anita and her family have always been so special to me. I remember when my father passed away back in July 1975 when I was only twelve. Anita sent me a card and I could believe how sweet it was. I still have the card to this day. Anita, thanks for being such a wonderful friend. You'll always hold a special place in my heart. Congratulations, you married a wonderful loving person and we wish you both the very best in life. Love you.
Chris and I stayed with my mother when we were out there. It was nice to spend time with her, my Aunt and my two brothers and their kids. Chris and I also talked to my brother about putting in a vineyard on the property that my
grandparents
left me years ago. My brother has been very successful with his vineyard so we thought he could oversee ours. When it's time to retire, I think we'll end up in the Napa Valley. The weather is a lot better in the winter than it is here on the East Coast. However I can't even think about living out West now because I love the East Coast too much. The nice thing is I really think I'll make it to retirment now that my health is under conrol. It's nice to think about the furture. May, 2008
 This month I started off in Italy attending yet another tradeshow. I love Italy so it wasn't so bad. The big excitement of the show was one of the exhibitors had a display of Olympic Torches they were beautiful and unique in their own way. I never really gave the Olympic Torch much thought, however, after holding one I realized the detail and design that goes into them. I was surprised at how heavy they are too. I'm not sure how someone runs with it but then again I'm not an Olympian. The torch I'm holding is from the Olympics 1988 summer games in Seoul , Korea . I liked it because it was green.
Holding the Olympic Torch was fitting for me this month. Memorial Day, 2008 was the first day I went Prednisone FREE in over 11 years. I have been taking Prednisone every single day for the 11 years. I was down to 1mg a day for the past month and I was handing that just fine, so I thought I would give it a shot. On Memorial Day I didn't take my normal 1mg. Chris and I went boating and took it easy that day. Chris kept asking me are you all right? I think he was expecting me to fall apart at the seams or something. Nothing happened. I felt fine. The only difference was at Yoga the next day I was sweating a lot more than usual. I was hot most of the next day. I'm not really sure that the extra heat was an effect of the lack of Prednisone or not. Since I didn't suffer from any bad effects I decided to push it a little the next week. I skipped my dose twice, again no effects other that I was a little tired. My lungs are strong and no pain in my muscles. I know I said it last month but I really feel I've had a shift in my health.
 May is a beautiful time on the East Coast, everything starts to come alive. I love taking morning walks in our gardens to see what is bursting out of the ground. Every day I find something new. This year the garden has exploded with color. I guess in the Spring we got just the right amount of water and sun. This time of year is such a special time for me. I can final get down on my hands and knees in the dirt without some kind of pain. I think I would have been up for digging last year if it hadn't been for my back. It's so nice not to have any major problems with your body. I feel like my life is back on track. Having all these challenges to deal with over these past years has taught me to really enjoy the good times and not to take the bad times too serious. It taught me to enjoy life to the fullest each and every day.
April, 2008
April was a very busy month for me. I spent a week in New York City at my annual tradeshow. It was exciting because I didn't have any challenges this year (last year I was on a scooter because of my broken back). The Rituxan had fully kicked in and I was feeling great. The weather was beautiful. It was freakish warm and it was such a pleasure walking around the city in a tee-shirt before the show started. The true pleasure was to be able to walk around and not feel bad. It was one of the first times I felt like I wasn't sick anymore. It was such a wonderful feeling, kind of surreal. I was by myself going in and out of stores on Fifth Avenue, walking around enjoying the sun and enjoying the people. I stopped and watched people ice skate in 80 degree weather at Rockefeller Center. I stopped and stared at the spring trees and flowers that were bloom. It was a perfect day and I just truly enjoyed it.
I had a very successful tradeshow. I worked hard and I got plenty of downtime too. I took one of my clients to the spa and we both had a great time. It's always nice to pamper yourself in the middle of a very stressful and busy time. It's a nice balance. Balancing my life is a lesson Polymyositis has taught me over the years.
 Chris met me in the city on the last day of the show and helped me pack the car with all my stuff. We had a nice dinner and spent one last night in the city. The next morning we got up very early and drove to the airport and flew to Cabo , Mexico to meet some of our friends. Cabo is very relaxing and the resort we stayed at was beautiful. We enjoyed lying out under the sun, wonderful meals and spending time with our good friends. We found time to go to the gym, shopping and snorkeling, Chris even went scuba diving. Cabo is a great way to unwind and defrost from a long winter. It's also a wonderful way to end a tradeshow.
 
 The resort that we stayed at was on the side of a hill and in order to get around they drove everyone in little golf cart. The only other option was to walk up and down hundreds of stairs. There was a time, not so long ago that I struggled up and down just two or three sets of stairs, let alone hundreds of them. I'm happy to say I only took a ride in the golf cart two or three time the entire time we were their. Chris and I walked up and down the stairs several times everyday. I only stopped a few times to catch my breath. Chris and I were both impressed.
There has been a shift in my health and I'm not sure what it's attributed to. However, everyone is noticing it. My husband, my yoga instructor, and everyone I work with. It's nice for the first time I don't feel like the monster is just hiding waiting to spring out on me. I feel like he's left the building all together. I feel like something is missing and that something is Polymyositis and it's a wonderful feeling of nothingness…
 I've been taking 2mgs of Prednisone a day, 14mgs a week, and I'm starting to taper down off of that. I'm going down 1mg a week. I know it sounds funny to go so slow, but I've been on Prednisone for over 11 years now and it's been impossible for me to get off of it all together. This is the first time in 11 years I've been this low. I really feel I'll get off this all together by this summer and I'm very excited about that.
March, 2008
 I went to the oncology office for my Rituxan treatment this month. The treatment only took 90 minutes, In the past it has taken up to four hours. It's always nice to breeze in and out of there. Sometimes it can be depressing seeing all the people going through chemo treatments, their fragile bodies fighting to stay alive. It's heart breaking to watch. It's a reminder of just how lucky I am.
The Rituxan is really working for me. I have no cough and my muscles are getting stronger by the day. I'm down to 2 mgs of prednisone a day. This is an all time low for me. My goal is to get off prednisone altogether. My iron levels are coming up slowly so eating red meat might be helping. I'm going to continue eating it for now. My next blood test is in July. Things are really starting to turnaround. I'm so happy I'm feeling great. I'm able to workout, take the dogs for long walks and Chris and I continue to travel and I have no side effects from any of it. I'm a much stronger person than I have been over the last few years and I have the Rituxan to thank for that.
 This month Chris and I spent a long weekend in Newport Beach California. I used to have an apartment out there years ago. I traveled back and forth from New York to Irvine monthly. I was really burning the candle at both ends back then! It was fun showing Chris all my old hang outs. We went shopping, sightseeing, and we stopped by and saw a few friends. My very dear friend Camilla and her husband Raffi have two sets of twin boys. Yes…four boys under five! They're so cute and well behaved too. It was really nice so spend some time with them. I'm just sorry we didn't have more time.
 We spent Easter Sunday at our house with Harrison and Emerson, Chris' grandsons. It's always fun watching them hunt for eggs. The goal Easter Sunday is to find the Easter eggs before the dogs do! We had a special treat this Easter. It was Emerson's third birthday. Chris and I made a train cake. Emerson is a train freak. He loves Thomas the Train. All you have to do is say the words Thomas, and little Emerson's face lights up. The cake took us two days to make, but in the end it was worth it.
February, 2008
February turned out to be a pretty good month for me. I'm down to 3mgs of Prednisone. My body and lungs feel strong and I'm starting to feel like a normal person, whatever that feel like.
 February 10 th , 2007 is when I burst my T-12 and spinal canal in a boating accident. It's been a year now, and I'm surprised at how fast it's healed and remarkably, that I have no pain. It's truly a miracle in many ways. First of all I was lucky enough to be able to walk away from the accident. Okay, maybe I didn't literally walk away but you know what I mean. The doctors couldn't believe I didn't have any permanent damage to my spinal cord. Then I was lucky that they couldn't do back surgery because of my lungs (PF). I had to heal the old fashion way, on my back in a body cast for six weeks followed by four months walking around with the cast. The scariest part was the doctors couldn't tell me what was going to happen or whether or not I would suffer from back pain for the rest of my life. I just had to cross my fingers and pray everything would turn out. It has! One year later I'm doing just fine.
 I would like to believe it was all due to praying, but what really worked was a lot of hard work on my behalf (I'm sure the praying didn't hurt). I exercise everyday, and the one exercise that has helped me the most is yoga. The daily stretching has really helped my back and my whole body in so many ways, as well as my spirit. Yoga has helped my lungs too. My breathing is stronger than it's been in ten years. I do a lot of breathing exercises and yoga is all about breathing. Yoga is great. It's for everyone even if you can't touch your toes. Chris has been going to a restorative yoga class on Tuesday nights with me and he really enjoys it too. Chris has been going to the gym most of his life and he has very tight muscles and finds that the restorative yoga has really helped him loosen up.
 February was a very exciting month for the Connecticut Myositis Group. It was the first time we got together! A small group of us met for lunch and talked about treatments, hospital stays and how we deal with the disease day to day. It was especially helpful for new members present who had been recently diagnosed with Myositis. Sometimes all this info can be very stressful when you read about it but it's somehow more comforting when you're face to face with someone who has the same problems. It really makes you feel that you're not alone. We had such a great time that we're going to meet again in June. I'm really looking forward to it.
 Okay here it is!!! For the very first time in over thirty years I'm eating red meat… yes you read it right. (I can hear the phone ringing now; it's all my friends that have known me for years calling to see if it's true) The vegan of thirty two years is now a meat eater! I'm trying this out to see if it helps my anemia. My red blood cells are down again, and I have to make sure it's not my diet. So I made the decision to try eating red meat a few times a month to see if it helps. If it doesn't then I'll go back to just eating fish and tofu and chock it up as a failed experiment. If it works then great, I will not have to deal with anemia any more. I'm truly dedicated in getting healthy. I'll do whatever it takes, even if I have to try something I never dreamed of doing. Just between you and me I would really rather not eat meat but here goes.
January, 2008
 I love starting a new year… It's like getting to start all over again. Chris and I celebrated New Years Eve the same as we have the past few years, from the hot tub. The only difference is we do our count down at 9:00 PM instead of midnight. After all, its midnight somewhere! So when the clock strikes 9:00 under the stars on a cold winter night we toast to a healthy new year ahead of us.
Every year in December I go in for all my annual checkups. I'm not talking about the checkups for PM and PF, I'm talking about the checkups that healthy people over forty need to do. I went to the optometrist, dentist, gynecologist and I had my annual mammogram test.
My vision is fine. However, adjusting my prescription is an on going challenge for my optometrist. My vision changes all the time and the reasons are prednisone and Myositis. If you think about it, your eyes are a muscle and Polymyositis affects ALL muscles. So I'm always back and forth with contacts and glasses. It's a good thing I'm in this business and have an endless supply of glasses.
My dentist and gynecologist both gave me a clean bill of health. However, I failed my mammogram test. They call me this first week in January to schedule another test. I thought, okay, no big deal. I have so many lumps in my body there's no surprise they would find one in my breast. At the appointment I was sitting in a room waiting for the nurse and I sat next to this woman in her late thirties. She was with her six year old daughter. I could feel this woman's fear. I felt so bad for her. I tried talking to the daughter to make it a little easer on her, but it just wasn't working. The energy coming from her body was pure fear and I could feel it. She didn't look scared, but the energy she was projecting was nothing but fear. I prayed to God she would be okay as she could clearly not handle something like this. Just then the nurse came out and told her she was fine and she could go home and they would see her next year. The relief on her face was beautiful. Then the nurse turned to me and said we need to test you again. So, back in I go for another test. About ten minutes later the nurse came back out and told me I could get dressed, however, the doctor needed to talk to me. As I was in the dressing room all I could think of was thank God it's me the doctor has to talk to and not that woman with her daughter.
I sat in a room the size of a closet and waited for the doctor to come in. As he was entering the room he said “don't be nervous”. Easy for him to say, he's not the one with the problem. He told me they found calcium clusters in my left breast and they would like to do a breast biopsy. Great, yet another problem. All I could think of is what's wrong with my DNA. I'm a mess! I told him my medical history thinking he would say “oh, that's what it is, Polymyositis that explains the problem”. No such luck. He explained that calcium clusters can develop in the beast and over time they can turn to cancer. However, he didn't think mine we cancerous but just to be on the safe side I should have the biopsy and have it tested.
A few days later I went in for the biopsy. They start out with yet another mammogram of my breast (not pleasant). Then they took me in to the room with all the equipment. The entire nursing staff is dressed in pink with little pink ribbon pins. One nurse is in charge of my mental state. She followed me around asking me if I was doing okay about one thousand times. They all asked me so many times it was getting annoying so I finally had to tell them, I'll tell you when I'm not okay… OK. In total there were two nurses and a doctor and a technologist in the room with me. When they were ready I had to lay down on a table with a hole in it. Then they clamp me in. it's like a mammogram lying down (really not fun). After they properly positioned everything they take an image of the breast to make sure everything is in place. Then they give you something to numb the breast. Then they turn on the device and you hear all kinds of weird sounds and a little pressure. The needle goes into the breast and removes multiple tissue samples without having to remove the device. When you hear a beep it completed. A final set of images were taken and a titanium marker is placed where the tissue was removed. This is so in the future they can identify the exact location of the biopsy. The marker is safe and poses no health risk, so they say. I asked them if it has my address on it like my dog's does! Leo has a chip in him too. If he's ever lost they can find us if they wand his neck.
We waited three long days for the results. I got phone call and the doctor told me the results came back “negative” for cancer. Dodged that bullet once again! Chris and I went out to dinner and celebrated. Cheers to one less problem to deal with.
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