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December 2005:
Have a wonderful holiday season! Cheers to 2006 and may all our CPK's and CAT scans be normal! Lenor, Chris and the three dogs, Abigail, Jak and Leo.
I just finished up my third treatment of Cytoxan, only three more to go. I have to say the results have been a little discouraging. The Cytoxan hasn't done much to calm down my disease. In fact they had to add Rituxan to my regimen. Rituxan is given intravenously at the doctor office. My insurance company has approved four treatments, one per week. The treatment takes about six hours. Rituxan is drug used to treat non-Hodgkin's Lymphoma. Rituxan is a genetically-engineered monoclonal antibody that targets a receptor called CD20, found on some B cells. With Polymyositis you find inflammation in the T and B-Cells. They're hoping the Rituxan will go after the B-Cells and calm down the inflammation, therefore putting the disease in remission. If you would like more information on Rituxan, the website is www.rituxan.com
Between the Cytoxan and Rituxan I was expecting to feel awful and to be hairless. Surprisingly I'm not suffering from either. I'm not feeling my best, but I'm surprised at how well my body is handling all this. In fact, we were at a Christmas party and a woman was commenting on how great my skin looked. I had to laugh. If she only knew my secret. Perhaps my body just reacts well to awful chemicals! Or maybe, someday I'm going to walk down the street and just disintegrate into a million pieces.
I went out to California this month on business and stopped off to visit my mother. She has lung cancer and just finished her chemo and radiation treatments. She has a very positive attitude and seams to be handling it very well. She lost a little weight and her hair. Other than that her side effects were minimal. I must have her genes. We both deal well after being poisoned. We'll find out how she's really doing in a few months when she goes back in for more testing. Our fingers are crossed.
 I went back and read my health update for 2005 and discovered I wasn't as healthy as I was in 2004. Despite the difference it didn't slow me down. For me the key to dealing with an auto immune disease is trying to keep some kind of normalcy in my life. You have to give up so much when you're ill it's nice to hang on to a few things you enjoy and are used to doing. One of them is traveling. This passed year Chris and I traveled to, St Thomas a few times, Cancun Mexico, and Ireland. That's not so bad when you consider my health. So when I look at the big picture, life isn't so bad living with an auto immune disease, it's just more
challenging!
Happy New Year! November 2005:
 November has been quite the travel month for us. Chris and I left for Ireland a week after my first treatment of Cytoxan. I felt comfortable in going because I didn't suffer from any side effects from the treatment, and I was feeling relatively good. Ireland is really a beautiful country, with its castles, green grass, and beautiful coastline. What's not to love about it! Oh, the best part of the trip was it only rained the first day we got there. The rest of the time was beautiful sunshine and a couple of distant rainbows, just what you would expect in Ireland .
 When we returned home, Chris received a message that his father Norm had just had a heart attack and the outcome didn't look good. So Chris flew down to Asheville , NC to be with his father. Norm had all seven of his children by his side, and he was coherent until the last of the sisters arrived, then three hours later he passed away. All the kids got to say their good-byes. Chris said the passing seemed as natural as a birth. Then over the next couple of days the balance of the family flew in for the service–husbands, wives, kids, grandkids, and great grandkids. As one of the newest members of the family it was really something to see them all together. The love and respect they have for one another is very special. You could feel it in the air. Norm was a very blessed man and he will live on in the memory of so many.
When I returned from Asheville I went in for my second treatment of Cytoxan. I was feeling awful, my legs were killing me, my muscles were sore to the touch and I was coughing a lot. I dragged my body into the doctor's office for the treatment and it took everything I had. Once I was hooked up to the IV for steroids I started to feel a little relief. By the next day I was feeling much better. However, the 20mgs of steroids only lasted a day, and then I started to feel bad again on the third day. Dr. Nascimento increased my Prednisone from 15mgs to 20mgs and that made all the different. In addition to the Prednisone, I've been taking 500mgs of Buffien for pain and that really seems to help. I still have my fingers crossed that this treatment is going to work.
We started the month out traveling and we ended the month traveling. For  Thanksgiving we flew down to St. Thomas to spend the holiday with Chris' brother Jim and his family. (“I know what you're thinking! When is she ever home!”) For me there is no better therapy than the warmth of the ocean water and sandy beaches. St. Thomas was just what I needed. To make the trip even more special, Chris' son Kevin and his family joined us. With everything that took place this month, this was a very special holiday to be together. We all reflected on what we were thankful for. For me, I'm so thankful to be part of such a wonderful family and to have such a wonderful husband by my side. It really makes dealing with my day-to-day health issues so much easier. Support and love is such a special gift. Oh, the best part of the month was the bone marrow text was negative! Yippee!
October 2005:
 I started my Cytoxan treatment this month. I had previously been on 700mg of Remicade and 150mgs of Imuran. I switched because I was having a hard time tapering off the Imuran and the Remicade. And the Remicade was only lasting about three weeks and my treatment was scheduled every four. So it was time to make a change.
Before I stared the Cytoxan treatment my doctors ordered a complete set of blood tests. They tested for everything, and the only thing that came back was the usual; high CPKs and very anemic. Dr Nascimento wanted me to see Dr Berard (Oncology/Hematology) before I started the Cytoxan. They wanted to find out why my red blood cells are so low and why they keep dropping? I have been suffering from chronic anemia or chemotherapy-related anemia and it looked like it was getting worse. Dr. Berard looked at my blood and noticed I had tear-drop shape red blood cells, so he ordered a bone marrow test. That didn't sound like fun!
Chronic anemia or chemotherapy-related anemia can shorten the red blood cell life span which can result in decreasing the amount of iron available to make red blood cells. Without enough red blood cells, you feel tired both physically and mentally.
I went to Dr Berard's office for the bone marrow test. Dr Dennean and two nurses performed the test. They were great. Dr Dennean gave me a local anesthetic injection into the hip to numb it. Then they gave me an IV of vicodin and some other sedative so I would feel relaxed. After all I was about to have a needle stuck into my hip bone and have bone marrow sucked out! At first I didn't think the drugs were working. I was on my side looking at the bottles on the table while the doctor and nurses were preparing my hip. I noticed one of the bottles was starting to slide off the table, so I brought it to their attention. They all looked at the bottle and started to laugh. They said “Lenor, you have plenty of pain killers, that bottle isn't going anywhere!” Wow, this stuff is good. Then it was time for the needle! The needle went through the skin and into the center of the hip bone where the marrow is. I felt a sudden sharp pain when the doctor started to draw the marrow out and then it was done. She went back for a second time and this time she turned the needle back and forth while pushing. Again I felt the sharp pain, but it was just for a second and then it was all over. After the test my hip ache for a couple of days, but it really wasn't that bad. It will take a week or so to get the test results.
 Two days later I went in for my long awaited Cytoxan treatment. The treatment was at Dr Berard's office. They have a Chemo room called the sandbox, I'm not sure where that name came from. I however, prefer to call it the juice bar! I receive a bag of saline solution along with 100mgs of Anzement anti-nausea medicine and 10mgs of a steroid. I was also given a shot of Aranesp for the anemia. It took about an hour to finish up all three bags. Then I was given one more bag of saline solution along with 1,400 mgs of Cytoxan. It took another hour to finish that up. After the treatment I came home and when back to work. I didn't feel nauseous at all, I felt pretty good. However, just in case, I had three prescriptions filled; compazine, ativan, and kytril. They were all for anti-nausea. The one thing that I did do to prepare for the treatment was drink water. I drank a bottle before, during and after the treatment. I also drank a lot of water over the next three days just for good measure. The one thing you don't want to do is let the Cytoxan sit in your bladder. October 10th 2005:
Last weekend Chris and I attended the Myositis Association Annual Conference in Cleveland, Ohio. This was the first time I have ever seen anyone with Myositis. I have to say when we walked into the banquet hall filled with two hundred people with Myositis, my eyes swelled up with tears. My first thought was, these are my people! It took everything I had to hold back the tears. I guess I wasn't expecting it to be that emotional. Just seeing so many people in wheelchairs, using walkers and canes really hit me like a ton of bricks. I think for the first time it brought my disease to the forefront. So this is what Myositis looks like! As I followed my husband to the table I realized that there was no way in the world I would have been able to do this without him by my side. Again I was reminded of what a special person he really is and what a very lucky person I am to have him in my life.
Over the next two days it became easier. I met some wonderful people and we exchanged stories and e-mail addresses. I realized Myositis is rare and that between the four different types, Polymyositis, Dermatomyoisits, Inclusion Body Myositis, and Juvenile Myositis each have their unique challenges. I don't think there were two of us alike in the same room. I also realized what a group of strong individuals we are. We are dealing with an incurable disease that doctors know very little about and there is hardly any research being done because there are so few of us. Yet most of us still have a very positive attitude. I felt very proud to be part of this group. So if you have Myositis or know someone who does, please joined the Myositis Association and be part of this very special group. www.myositis.org
September 2005:
Remicade kicked in just in time!
 One week after my Remicade treatment I headed out to Las Vegas for a tradeshow. I was feeling awful until the day I left for the show, and then, just in time, the Remicade kicked in. I can't say I was feeling as great as I had in months past, however, I had enough strength to get the job done. Chris joined me for the weekend and made the trip a little more bearable. At the show I did my best to pamper myself. I took a couple of my clients to the Canyon Ranch Spa at the Venetian for body treatments and massage therapies. I also found a bar I could hang out in! The Oxygen Bar! It was quite entertaining. For twenty bucks you get about twenty minutes of oxygen along with a back and head massage. It wasn't the best bargain in town, but then nothing in Vegas is cheap anymore. By the time I got home, I had little to no energy left.
 I realized that Remicade is only lasting three weeks or less. My treatment is every four weeks. I'm already maxed out in the amount I can take, and the frequency I can take it. So it's time to try something else. For me Cytoxan is the next big adventure. Believe it or not, I'm excited about trying it. Just the thought of going into remission is very exciting. Don't get me wrong, taking my body to the depths of hell isn't going to be a picnic and I know it, but I'm ready mentally and I think that's half the battle.
The Cytoxan treatment that has been prescribed for me is, IV once a month for six months, and a follow up treatment every three months for a year. The down side is of course the side effects. One of the minor side effects is losing my hair. This is funny because when I was younger, I always wanted to shave my head ever since Sinead O'Conner did it. Watch out for what you wish for! The other side effects are more severe, leukemia and bladder cancer are two of the biggies. You can run into trouble when Cytoxan sits in your bladder for a period of time. So, I just have to drink lots of water before, during, and after the treatment. I start my first Cytoxan treatment October 10th.
September 6th:
I've been approved. Yeah! I'll go in for the treatment tomorrow September 7th . I knew it would get approved. It just takes time, patience, and a wonderful team of doctors. Thank you Dr. Nascimento, Dr. Noble and Dr. Dafcik. You guys are the best. And a very special thank you to Donna that works at Dr. Nascimento office. She worked directly with the insurance company and made it all happen.
August 2005:  What a month! The company I work for decided to change insurance companies again! This is the third insurance company in seven years. For me this is very difficult because it means I need to get approval for Remicade again. Remicade is not a drug that insurance companies typically approve for the treatment of Polymyositis or Pulmonary Fibrosis.
So the battle is on with Empire Blue Cross/Blue Shield. Here's what I have in my favor. Both PHS and United Health Care have approved me for Remicade. I've been taking the drug for over two years now, and I've been able to keep my CPKs down and my Pulmonary Fibrosis under control. Three of my doctors (MD, rheumatologist, and pulmonologist) have written letters and sent case studies on how Remicade has worked for patients that suffer from Polymyositis and Pulmonary Fibrosis. The doctors have also agreed Remicade has been a lifesaver for me.
Going back and fourth with the insurance company is just part of dealing with an autoimmune disease. It's something you get use to after eight years. I can't tell you how frustrating it is to have an insurance company tell you what drugs you can and cannot take. It really boils down to one thing, MONEY!
 I'm a month over due on taking my Remicade treatment. My body is starting to stiffen up and my breathing is feeling heavy again. It's really amazing how fast things can go down hill. So I had to increase my other drugs. I was taking 125mgs of Imuran I'm up to 150mgs now. I was taking 10mgs of Prednisone I'm up to 15mgs now. With the Prednisone I can't go any higher than 15mgs due to Steroid Myopathy. My usage of Protonix and my list of vitamins have stayed the same.
 With everything going on, Chris and I decided to go on vacation instead of sitting around and worrying. So we took our boat up the Hudson River to the Champlain Canals to celebrate Chris' birthday. What a great trip. The weather was spectator. We made it as far as Saratoga , New York before we turned around and headed home. We spent an extra day in Saratoga and went to the horse races. I can't say we have a knack for picking winners, however we're pretty good at picking the losers. Our horse always came in dead last. Other than that the trip was amazing. It was by far one of the best boating trips we've ever been on so far.
 
July 2005:
Our One Year Anniversary!
 How things can change... A few years ago, if anyone had told me that I'd be married and have four grandchildren, I never would have believed them. But it's true and I have to say it's been an amazing journey. One reason it has been so great is that I married a terrific man. In life, it's easy to share all the wonderful, good moments with someone. However, a person's true colors really come out during the difficult times. Chris' willingness to be by my side through the day-to-day struggles of my chronic illness is a blessing. This first year of marriage has truly been special, and I'm really looking forward to spending the rest of my life with this remarkable man.
We celebrated our anniversary in Essex, Hamburg Cove.
 If you have been following my monthly update, you know I've been obsessing over my CPK numbers, when I've really had nothing to obsess about. Normal CPKs are 155 and last month mine were at 196. That's only 41 above normal. I figured out why I was having such a hard time walking last month. It was because I was suffering from “Steroid Myopathy”. I was taking too much prednisone. That is what happens when you obsess about numbers and use prednisone to try to fix them. So I've learned, again, that “more” is not necessarily better. I went from 20mgs to 15mgs and I'm feeling much better now. In the future, I am going to try to not obsess about my numbers and just go with how I feel.
You solve one problem and another one pops up!
This month I came down with a respiratory infection and had to be treated with the antibiotic Zithromax for five days. I walked around breathing very heavily and coughing. The Zithromax cleared up the infection in a couple of days, however I was reminded how quickly my health can take a down turn.
I've been having a hard time tapering off the drug regimen. So my doctors are talking about changing my drugs, even though I am tolerating them quite well. They're concerned about the long-term affects that immunosuppressant have on the body. They would like me to think about a more aggressive approach such as IV Cytoxan. The potential long-term toxicities of Cytoxan include hematuria and bone marrow dyscrasias. The upside is it could put everything into remission and I could be drug free! Okay, not completely drug free but reduced.
 On one side I hate to rock the boat, I'm feeling okay, but on the other side, if I could reduce my drugs I'd have less of a chance of something happening down the road. I don't know what to do. It's hard to change drugs when you're tolerating the ones you are on. I'm going to spend some time this month researching Cytoxan and getting second opinions from some of my doctors. I'm sure by the end of the month the answer will come to me.
June 2005:
I had a little setback this month. While my over all health has improved tremendously from when I first became ill, there are still days when I am reminded I'm living with a few autoimmune diseases. Mentally I'm ready to do everything I used to do seven years ago. However, my body isn't quite there yet. Some days can really be a challenge managing the symptoms. However, to keep my spirits up, I just remind myself of where I used to be and I know there are always better days ahead.
This month my CPKs went up to 196 which isn't really that high. The depressing thing is that last month I increased my medications. I'm taking 700mgs of Remicade, 20mgs of prednisone, 150mgs of Imuran and still my CPKs went up. I've tried to think of things that I've done to cause the increase and came up blank. So, I'm starting a diary of everything I eat and the activities I do during the day. Maybe I'll learn what triggers a flare-up, or maybe I'll just learn that nothing triggers flare-ups they just happen.
My flare-ups this month would just come on randomly. I would wake up fine in the morning and by 6:00pm my legs would run out of steam and give out. The rest of my body was fine, it was just my legs. The only way to relieve the pain was to lie down or go to bed. What upsets me the most is, I love this time of year. I love spending time outside in the evenings, enjoying romantic dinners by the pond or at the garden, walking the dogs or just sitting outside watching for fire flies. For me nothing is worse than laying in bed at 6:00pm on a beautiful summer evening and watching everything from the window. Its different in the winter months, you just curl up next to the fireplace and read, and it's not so bad.
 Over the years I've learned to respect what my body is telling me. I've learned not to push it or it will be pay back later. If my legs are done for the day, then they're done and there isn't anything I can do to change that. However, in life I've found ways to get around things or to come up with a new plan if something isn't working. So, I went out and bought a gravity free chair. This chair is great. It's incredibly comfortable. It takes all the weight off your lower back and legs. Chris drags it around the yard and I'm able to enjoy the evenings lying down outside. If there is a will, there is a way.
 June hasn't been all doom and gloom. We've been having a blast boating every weekend and a couple of evenings after work when I've been up to it. There is nothing like being out on the water, words from a true Aquarius. It's like a vacation every time we're out there. We find little remote coves and anchor for the day or evening. It's so relaxing bobbing around and enjoying the surrounding beauty. Boating is the perfect activity for the not so active.
I wanted to thank everyone for all the well wishes for my Mother. She has a very tough road ahead of her. She found out her lung cancer is at stage three. However, she's in very good spirits, and is ready to take on her first round of chemo/radiation treatments. My Mother is a very strong person. She survived Tuberculosis thirty two years ago, when no one thought she would make it. My Mother is a fighter and she will give all she has to pull through this. I just pray that will be enough. May 2005:
 How do you help someone you love, without being a pain in the ass? This month my mother was diagnosed with lung cancer (adenocarcinoma). She had been a smoker for many years. However, she quit about ten years ago. Smoking could have been the cause of the cancer. However, you can develop this particular kind of cancer without ever smoking. I guess we'll never know how she got it. The bigger question is how is she going to fight it. She's 68 years old, and set in her ways.
When I first heard she had lung cancer, I immediately called her and started to tell her all the things she needed to do to change her life. I explained that modern medicine alone wasn't going to cure her, and she needed to fight like she'd never fought before. I would hear a quite “yes”, and an occasional “okay” with very little enthusiasm from the other end of the phone line. I found that I was getting frustrated when she wasn't agreeing with everything I was telling her. When I hung up the phone, I realized you can't force people to think or believe in everything you're doing. Everyone has their own journey, even if it is your own mother.
So my new plan is to let her digest what's going on, give her time to go through the initial shock, and learn to sit back and be patience with her. The most important thing for me to do is be there if, or when she calls. For me it's so much easier to deal with problems when they're mine. I can dive right into them. It must be that controlling part of my personally. But, when I really think about it, it has taken me seven years to get to where I am today. She's just starting her journey.
So Mom, if you're reading this, know that I love you, and I'm here for you in everyway. I don't have all the answers, but I do have a lot of experience on enjoying life to the fullest while dealing with health issues.
 As for me and my health situation, I'm feeling great. My CPKs are close to normal, they're at 176. My Pulmonary Fibrosis has been under control, and I have newfound energy. I'm currently taking 700mg of Remicade, 125mg of Imuran, 40mgs of Protonix and I'm down to 16mgs of Prednisone. The goal is to slowly taper down to 8mgs once my CPKs are normal. Along with all the meds, I've also been taking a long list of vitamins. I think the main contributing factor to my newfound energy is my diet. Chris and I have been eating better than we've ever eaten before. It's very time consuming putting together menus and making everything from scratch. However, the benefits are well worth it. I'm eating my way to a healthier life, and it's working.
Biofeedback
Over the past seven years I've been reading and experimenting with all kinds of treatments and therapies. I've come across biofeedback more than once over the years. I've either read about it or a doctor or therapist had recommended it. However, I never tried it until this year.
The book and CD series that caught my attention was Guided Imagery for Self-Healing , by Dr. Martin Rossman. I ordered them online at www.guidedimageryhealing.com. I really found the CDs very interesting. I listened to them three times a day for about fifteen minutes each time. I've downloaded them to my iPod and I take them with me everywhere I go.
At first I was skeptical and wondered what listening to CDs could do for me? I thought at the most, I would learn to relax. I was wrong. I learned so much more than that. For me it was really amazing. I discovered all kinds of things about myself. Thoughts and ideas came bubbling up from deep inside. I was on this quest that was not only exciting, it was also teaching me about my illnesses, and answering questions that doctors didn't have answers for. I was learning to communicate with my body and listen to what it had to say.
I can't say the CDs have cured me, but I can say that they have helped me understand myself, and how to deal with my illnesses better. Having a chronic illness has taken me in directions I don't think I would have ever explored, or even thought of, if it hadn't been for my illnesses, and for that I'm grateful. I'm always looking for new adventures and the biofeedback CDs fit that description.
April 2005:
 2001 was when I was first diagnosed with Pulmonary Fibrosis. It was by far the worst year of my life. I had already been living with Polymyositis for two years, and I wasn't ready to take on another challenge, certainly not one of this magnitude. That first year, I was depressed, scared, and alone. I had started to prepare for the worst. Then in January 2002 I knew if I wanted a different outcome, I'd need to make changes in my life and lifestyle. For me, modern medicine alone wasn't making a difference. So over the last three years I've made a lot of changes and I think these changes have improved my over all health. My Pulmonary Fibrosis has been under control for over a year now. In fact the disease is so under control, I did something I never thought would have been possible. I went scuba diving for the first time.
 My husband and I went on vacation to Cancun , Mexico . The resort where we were staying at offered scuba lessons. Diving has always been on my long list of things to do. I was feeling great, my CPK's were normal again, and I wasn't experiencing any breathing problems. So I thought, here's my window of opportunity.
After mastering the lesson in the pool, we headed out to the open ocean with a small group, most of them first time divers. There was something comforting in knowing most of the people on board were as nervous as I was. The dive took place on the reefs right between Cancun and the small island of Isla Mujeres. Once I was in the water and decompressed my ears, my nervousness went away, and I really started to enjoy the freedom of being underwater and seeing all its beauty. It is hard to describe the “weightless” feeling of being underwater. What's even harder to describe is the excitement I was feeling. I was breathing underwater! This was truly exhilarating. I was doing it! I was diving! The best part was I didn't feel any extra strain or stress on my lungs in anyway. However, I understand how diving would be impossible if I didn't have the energy, or if I was in one of my coughing stages.
 I'm not ready to conquer the Great Barrier Reef anytime soon. However, just pushing my own personal limits and finding new boundaries is enough for me. This last year, I've had my ups and downs but, for the most part, I've been feeling very good the majority of the time. I've worked very hard to get to this stage, and I'm going to continue to do whatever I have to, to stay here.
Here’s a list of things I’ve changed in my life:
No Sugar (or artificial sweeteners)
No Salt
No Yeast
No Caffeine
No Alcohol
No processed food
I eat fish three times a week (Wild Alaskan Salmon, Arctic Char, Tilapia Farmed)
I drink lots of water
Daily I take Calcium with Vitamin D, Zinc, Selenium, Vitamin A, C, & E and Omega-3 fatty acid as well
I sleep about 9-10 hours a day
I go to the gym twice a week for 30 minutes
I walk my dogs
Once a month pulmonary rehab
Yoga class once a week
I listen to a Biofeedback tape, two to three times per day
I'm living in a very healthy environment (No mold in my house)
Fell in love and got married! And I'm extremely happy in my relationship with my husband
And I'm happy at work
Baby Emerson:
On March 21 st , 2005 I was given one of the greatest gifts I've ever received. I witnessed the birth of grandson number three, Emerson Christopher. While I've always marveled at the miracle of birth, I never thought I would have a first hand experience. I myself never had children.
Kevin, Chris' oldest son, and his wife Christine, asked me if I wanted to be in the delivery room to witness the birth of their second son. My first thought was I don't think so! Then I really thought about what they asked me. Did I want to witness the birth of their child? Wow! What a gift, witnessing the miracle of life. So I said yes, with a little more enthusiasm. Then as the days grew closer my excitement built.
On the morning of March 21 st I received the call to meet them at the hospital. As I walked into the delivery room, I realized I hadn't prepared for anything. What kind of support person was I going to be if I didn't prepare! I didn't read that Dr. Spock book or anything else on the birth of a child. So I quietly took my place in the back of the room. I then watched in awe as Christine and her husband Kevin were guided by the nurses and doctor through the sequence of events leading to birth. Everyone had a special job to do except me. Then out of the blue, an opportunity at last! Christine was in all kinds of pain, and she was burning up, as she was delivering the old fashioned way (no drugs). As one of the nurses was preparing a cold compress for her, all of a sudden I realized no one has colder hands than I do. As I looked down at my blue fingers, I realized here was my opportunity to be helpful. Raynaud's pays off at last! As I ran over to Christine and placed my cold hands on her forehead, I instantly saw a very slight look of relief. Then thirty minutes later, baby Emerson had arrived, weighing in at 8 lb 14oz.
There are no words to describe the joy everyone in the room was feeling once you see the baby for the first time. And for me, it was such a privilege to be there for such an event, and I'm glad my cold hands came in handy. So thank you Kevin, Christine and baby Emerson for sharing this beautiful experience with me. I will always cherish it.
March 2005:
My CPK's are coming down!
What are CPK's? CPK is a blood test that measures creatine phosphokinase (CPK) or it can be called Creatine Kinase (CK). This is an enzyme found predominantly in the heart, brain, and skeletal muscles. When the total CPK level is substantially elevated, it usually indicates activity of the disease (Polymyositis). Doctors usually use the amount of CPK or CK levels in the blood as a measure of how well the medicine is working for Polymyositis. Normal CPK range is 26-155. This is one way you can monitor the activity of the disease. I have the CPK blood test done once a month.
I've been living with Polymyositis for seven years now, and I'm still learning how to control my CPK's. My CPK's were normal for seven months, which was a record for me. Then in January they went up to 198, and in February they went up to 339. I was getting discouraged, had increased my meds and stopped all exercising, and still my CPK's were going up. So I increased everything higher than I had in the past. Then in early March I had them tested once again, and they started going down. They went from 339 to 333 and by the end of the month, they were down to 222. Its working they're going in the right direction.
Everyone is different!
 I work full time. I'm in sales, so traveling and attending tradeshows are a big part of my job. Every March, I attend a tradeshow in New York City that is one of the largest shows in the industry. Last year after the show, I ended up in the hospital with pneumonia. So, this year I have to say, I was a little anxious going into the show. Pneumonia and Pulmonary Fibrosis is not a good combination at all. Tradeshows are tough on the healthy, let alone anyone dealing with an illness. But I'm happy to report I made it. The only thing I came home with were sore feet and a tired body.
At the tradeshow I was amazed with some of my friends and colleagues. Their ability to eat, drink, and stay up until the wee hours of the morning, and then to still make it to the show and actually function, was really remarkable! The abuse people put their bodies through is amazing to me. I wonder if other people would abuse their bodies if they saw what we go through every day!
 I feel like I'm some kind of rare, exotic bird that can't be pushed too much or my feathers will start falling off. I have such a delicate immune system, and I'm so in touch with it. I'm forever looking for ways to protect and improve it. So, at the show I had my organic carrots, bottled water, and vitamin C bottle with me at all times. I took my clients to vegetarian restaurants and the spa. I went to bed by 9:30 every night with the exception of just one evening. That night I stayed up until 11:30 entertaining twenty-three clients at dinner. And at the end of the show, I realized how much I've changed over the years. I might not be able to stay up late, drink or eat whatever I would like, but I know my body is the healthiest it can be, and it shows. Having a chronic illness has taught me to take better care of myself, and I'm grateful for that. Everyone is always telling me how healthy I look. The best part is I really feel healthy most of the time! And those of you that abuse your bodies, good luck!
February, 2005:
February started out a little rocky, but overall it ended as a great month. My CPK's went from 198 up to 339, so Dr. Nesamento and I decided to increase my Prednisone from 10mgs to 20mgs everyday. Increasing the Prednisone is the only way I'll get my CPK's down. I'm still taking 150mgs of Imuran and 700mgs of Remicade. The good news is that over the years I've learned to control some of the side effects that Prednisone is known for. I control the weight gain and the moon face by not eating salt, sugar or yeast. At first it was very difficult for me, but over time I got used to it. You would be surprised to learn just how much salt and sugar is in everything. I learned to eat only boring and tasteless food, like raw tofu, oatmeal with nothing on it, and plain brown rice. The pay off is no moon face or weight gain, and for me it's worth it. It's such a great feeling to be in control of something when your body is so out of control.
Last year I was diagnosed with ulcers in my esophagus and upper stomach as a result of taking so many meds over the years. 40mgs of Protonix once a day kept the ulcers under control until this month. Once I increased the Prednisone, I noticed right away the uncomfortable feeling in my chest. It felt like a bad case of indigestion. I called my MD and he had me increase the Protonix from 40mgs once a day to 40mgs twice a day. Within a week I was feeling much better.
 Living with a chronic illness is such a fine balancing act. It's easy to get caught up in all the negative stuff that affects each day. The frustrations of chronic illnesses are many. However, I remind myself of all the wonderful things that have happened in my life as results of having a chronic illness. There is no greater feeling than feeling the love and support that my husband gives me every minute of the day. I have discovered the trust and love from a man that can look beyond my illness and love me for just being me. I have learned more about myself in the last seven years than ever before. I have learned what my strengths and weaknesses are, but most of all I have learned what's really important in life. I've learned to enjoy it.
 Life is about balance, so that's what we did this month. After we learned my CPK's went up to 339, Chris suggested we head south for some vitamin D. Chris' brother Jim and his family live in St. Thomas, so we packed our swim suits and headed south. That was exactly what I needed. There is nothing better than the warmth of the sun to put you in a good mood, especially when you live in the Northeast, and it's the middle of winter. We spent our time boating around the islands and enjoying the warmth of the sun and water. When we returned home, I was feeing strong and healthy. It's amazing what a little sunshine can do for your attitude.
 Ironically enough, I've recently just learned that Prednisone is not just for people like me. When we returned from vacation, I noticed my little dog Abigail had been chewing her feet, so I took her to the vet. As it turns out, she has a skin problem and has to go on Prednisone herself. There is a good chance she'll be on Prednisone for the rest of her life. I wonder if she'll get a moon face!
January 2005:
Happy
New Year!
 Chris and I enjoyed the snow storms that hit the East Coast this month. We spent most of the time in the hot tub! There is nothing better than sitting in a hot tub, when a blizzard is going on. The wind is howling, the trees are swaying, and the snow is falling, and you're nice and warm, in water that's 104°. One of the benefits of the hot tub is it really helps me when my muscles are sore.
I made it seven months with normal CPK's. Unfortunately all good things must come to an end. My CPK's went up to 198. That's really not that high, but boy did I feel it. My body was fatigued and I started coughing again. I feel like I fell off the wagon. Starting all over again is just part of having a chronic illness, something I've learned to deal with over the years. It's like riding a horse. When you fall off, you get back up, brush yourself off and start all over.
 I realized I've been obsessing over getting off of drugs. Who could blame me?! The medications I'm taking are toxic chemicals with severe side effects. Every time I decrease them too much my body has a flare-up. So I had to ask myself, what's better? Taking a small amount of drugs and feeling horrible, or increasing the drugs and enjoying my life and taking my chances with the side effects. For me this wasn't a hard decision to make. I've been trying to decrease my medications for seven years now, and it hasn't been working. So I went from 75mgs of Imuran to 150mgs. I also went from 8mgs of Prednisone to 10mgs. I'm still taking 700mgs of Remicade once a month. Within a few weeks, I started to feel better.
I saw Dr. Noble, the lung specialist, at Yale this month. He agrees with me about staying on the higher levels of Imuran for awhile. Dr. Noble told me Imuran's side effects are not as severe as some of the other medications. However, he would like to see me get back down to 100mgs of Imuran and 8mgs of Prednisone, something I can work on once my CPK's are normal. My breathing test was stable this month, despite my minor flare-up. I just have to keep the Polymyositis under control. If I can do that then the Pulmonary Fibrosis stays under control.
I read the book The Art of Getting Well, by David Spero, RN. What a great book. The book talks about five steps.
- Slowing down
- Making changes
- Getting help
- Valuing your body
- Taking responsibility
This book is about everything I believe in. Making the best out of your life with what you have. Even though we have to deal with the ups and downs of a chronic illness everyday, we can still have a fulfilled life. The Art of Getting Well, along with Coping with Prednisone, are two books that have changed my life for the better. I highly recommend them both. The Art of Getting Well also has a web-site at www.art-of-getting-well.com.
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