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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 stake 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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