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December, 2007
Best wishes for a warm and wonderful christmas
and a New Year full of health and happiness. Chris, Lenor, Leo and Jak
 We'll I made it through another holiday season… As much as I try to organize myself each year I've never be able to master the feeling of having it all together. I'm not sure it's even possible. I've tried shopping earlier. I've tried not to over commit to all the parties, and I've tried not to have too many dinner parties myself. Then I find myself circling the mall parking lot looking for space with only two days left, mad at myself for forgetting that last minute gift in the fist place, only to be rushed because I've invited six for dinner. To make it even crazier I decide to try three new recipes out of five. NOT a good idea for keeping the stress level down. However, somehow I made it. The truth is I couldn't have done it without Chris. He's my wing man that's always ready to sign up for whatever crazy challenge I have found for us. I'm happy the holiday season is over and life is getting back to some level of normalcy.
I've been feeling great this past month. I'm down to 4mgs of Prednisone. I'm keeping my fingers crossed. I can't remember ever getting down this low before. My breathing is strong and it feels normal. Rituxan really works for me and I'm grateful to be on it. Looks like I'll be on it another year too. The company I work for has deiced to stay with UHC in 2008 so I shouldn't run into any problems with the coverage of the drug. However, as I'm writing this, I'm thinking, who am I kidding. I'm sure UHC will try to pull something in 2008…
Every year I go back through my update for that year and it gives me a chance to reflect on the year. I review what I've done and where I've traveled to, and what kind of health issues came up or cleared up. After reading all of 2007 all I can say is wow, what a year! I pulled out of a lot of really bad stuff. I'm even amazed at all the traveling I did despite the broken back. It always amazes me the things you can accomplish if you get out there and do them and try not to think about your disability for too long.
My health started out strong in 2007. I was taking Rituxan and 5mgs of Prednisone. I burst my T-12 and spinal canal in February and was able to get through it without any permanent damage. I also got though a kidney stone ordeal and a massive fight with UHC. UHC denied me the Rituxan treatment until my doctors threatened to hospitalize me. UHC put me through some really bad months.
 In 2007, Chris and I travel to Istanbul, Turkey , St Thomas, San Diego, CA, Napa Valley, CA, Hudson River. Then I had business travel on top of the fun stuff to New York, Las Vegas, Milan, Italy, Paris, France and California a few times. The bust T-12 happened in St Thomas but it didn't really slow me down. I didn't miss one day of work because of it. Kevin and Chris moved my office into the house and I worked from my gravity free chair for six weeks.
 In 2007 I lost two very close friends of mine. John passed away in the early spring. He was in he's 40's. He was always the life of the party, the funny guy. We had known each other for almost twenty years. He suffered from chronic depression. We talked a lot about having a chronic illness that's invisible to most people. His was always harder to understand. At times I even found myself not really understanding what's going on with him. He's a healthy looking guy, why is he so depressed, and the bigger question, why can't he snap out of it. Then I was reminded of my days of depression, the Zoloft days. Depression can be a chemical imbalance and when it hits there's not much you can do or say when the person get into that funk. Chronic illness is a very real disease. While most of us fight for our lives everyday at times all he wanted to do was end his. It's hard for most of us to understand that, and that's the sad thing about chronic depression. John didn't die from depression, he passed away of hypertensive cardiovascular disease. He didn't know he had it. It was very sad. He really didn't want to be here and his wish came true. I miss him every day. He was a good friend and such a sweet person. I just pray he's happy now and free of the pain he was suffering from.
 On December 27 th I received a phone call from Anne, the daughter of a friend of mine. She left me a message to call her on her cell. I gave my number to Anne and told her to call me if her mother Sue was acting depressed. Sue had just lost her husband ten months earlier. Sometimes when a spouse passes away the surviving one can get very depressed, so I thought the call was about that. All day I was thinking of ways to cheer Sue up. Sue wasn't the type of person you would think would need cheering up in the first place. She was always the one cheering you up. Sue was my landlord before I bought my house. I lived in her and Bob's guest house for eight years. Over the years Sue and I became good friends. She was old enough to be my mother, however, somehow we connected from the start. I loved it when she would stop by my house on a whim to bring me a new plant that she just picked up at the nursery or to show me some great bargain she found at a tag sale. She was so full of life. When Anne finely got in touch with me I couldn't believe it, Sue was gone.
 Sue had flow down to NC to spend the holidays with Anne and her family. She wasn't feeling that well on Christmas day. She thought she had a bad cold that just wouldn't go away. So Anne took her to the hospital to get checked out. They found out she had pneumonia and her lungs had not been getting sufficient into her blood system for days. All her major organs had started to shut down. The doctors couldn't believe her numbers and how bad they were. She didn't look all that bad. They tried to save her for two days bit nothing worked. It was just too late.
These losses served as a reminder of how precious our life really is and how important it is to tell everyone that you love that you love them. Sue's death really hit me. Not only did I lose a very dear friend but I'm also dealing with lung issues. It's very scary to think you can walk around for days just feeling a little bad and not know how bad it really is. It really makes you stop and think. Everyday is so very special. Go out and enjoy it. I want to thank all of you for your emails and support. It really means a lot to me. So thank you from the bottom of my heart. Happy New Year! And Cheers to low CPK's and healthy lung test… Lenor November, 2007
 November was a month of rest for me… I've been traveling and I really needed a break so I took a week off work and didn't go anywhere. I started my home vacation at a spa in Fairfield , CT. I had an Ayurvedic hot oil treatment on my third eye. It was a unique sensation, completely and utterly relaxing. A pot of warm oil was positioned right above my forehead and oil slowly drizzled over my so called third eye. My head was tilted at a slight angle so the oil ran off my head into a tray. My hair was soaked with oil when I was done. I thought I'll never get this out, but it really wasn't a problem, and afterwards my hair felt so soft for days.
Since I had the week off I moved my Rituxan treatment up a few weeks. This way I didn't have to miss any work. Everything went smoothly and I was out of there in three hours. The Rituxan has kicked in and I've been feeling great over the last couple of months. This treatment was a maintenance treatment that I have every three months. I've been feeling so good that my doctor and I decided to try to taper down on the Prednisone. I'm at 4 mgs. This is an all time low for me. My goal is to get off Prednisone all together and just take Rituxan. I've been on Prednisone of ten years and I've never been able to kick it completely but who knows, stranger things have happened. I enjoyed my time off. I went to yoga class everyday, had lunch with friends and I went Christmas shopping. This little vacation was very relaxing and I'm really glad I decided to stay home.
 This month a few of us from Connecticut drove up to Massachusetts for a Myositis luncheon. This was a first for all of us to get together and it was really fun. It always amazes me when I hear the stories of other people with Myositis and realize how similar we all are, yet we're all so very different. The luncheon was very informative. Dr. Steven Greenberg from the Brigham Women's hospital was there talking about the research he's conducting on Myositis. It sounded very promising. It looks like they're getting close to finding a drug to help Dermatomyositis. He said they're about two years away. I'm sure once they find a cure for DM, PM is going to follow. Inclusion Body Mysoitis is the tough one. If you want to know more about the study you can check out his website but I have to warn you, you'll need to break out the medical dictionary. www.inflammatorymyopathy.org or www.s-ibm.org
 Chris and I spent the Thanksgiving weekend in New York City . It was really fun. We stayed at a beautiful luxury boutique hotel called “Hotel Mela”. It's not far from Times Square . We really had a great time. The weather was freezing and we were not prepared so we had to buy hats and gloves on the streets. We felt like real tourists. We did all the things a tourist would do too. We ate at great restaurants, went to the Metropolitan Art Museum and shopped. The only bad thing about shopping was we forgot we took the train into the city so we had to over pack our suitcase and drag everything home. It looked like we had been gone for months. Next time I'll have to buy less or bring my car!
October, 2007
I'm Back! The Rituxan has finally kicked in! Yehaaa!! I feel so much better, my breathing isn't where it should be, but it's a lot better than it was. Rituxan really works for me. It takes time, but when it kicks in I feel like a brand new person. Rituxan is given intravenously at the doctor's office. The treatment takes about six hours. Rituxan is a drug used to treat Non-Hodgkin's Lymphoma. The interesting thing about Rituxan is that it 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. The Rituxan will go after the B-Cells and attach itself and calm down the inflammation, therefore putting the disease under control. When the Polymyositis is under control so is my Pulmonary Fibrosis.
I went to see the lung doctor this month and I was hoping things were getting better. After all, I wasn't coughing as much and I was really feeling a lot stronger too. Unfortunately my lungs are paying the consequences of being without Rituxan for so many months. Thank you United Health Care. My oxygen levels are down and my total lung capacity is at an all time low. I'm going back for a follow up visit in November so I'm hoping things will start looking up. I'm also going in for a follow up Rituxan treatment so that should only improve things.
I started out the month at a tradeshow in Las Vegas for a week. While I was working hard in Las Vegas , Chris was basking in the sun in the Caribbean . He went on a cruise with his sons and Christine. They were celebrating Kevin's thirtieth birthday in style thanks to Kevin's wife Christine. She planed everything. Unfortunately for me my tradeshow this year was moved out a few weeks so I had to pass on the event, but Chris' youngest son Jason went in my place. It was a very special trip for Chris. It's not every day a father gets to spend a week playing with his two adult sons.
After returning from Las Vegas I rested for a week then I was off to Paris, France to yet another tradeshow. This trip was so fast I don't even remember doing anything fun other than going to dinner. I left Wednesday night and returned Sunday evening. My body didn't even have time to adjust to the time change. I've been to Paris many times so I didn't feel like I missed out on anything and right now the Euro is so high it puts a damper on any shopping, so the only thing left to do was work and get home. The big challenge was getting around the city, the Metro was on strike!  When I retuned home the leaves were in all their glory and Halloween was just around the corner. The boys dressed up as Bat Dog and Pirate dog. They hated every minute of it until the cookies came out. Fall always reminds me of why I love Connecticut so much. Every day is so beautiful and the colors are just so special. It's like living inside a painting. The air this time of year is clean and crisp and the blue sky is an amazing color too. Chris and I both love this time of year. I love making soup and breads on the weekends and Chris has perfected chopping and stacking wood, so we have plenty of fires to keep us cozy too.
September, 2007
 Well, I made it through September although the Rituxan is definitely taking its time to kick in. The beginning of the month I had to go in to get a shot of solumedrol because I was having such a difficult time breathing. I tried increasing my Prednisone. I got up to 20mg's and immediately the steroid myopathy kicked in. Steroid myopathy is when your body becomes weak because of all the steroid use over the years (Solumedrol, Prednisone). The weakness went away once I tapered down to 10mgs. The last time this happened the muscles in my legs were very week. This time it was my arms. Once again I find myself balancing drugs with their side effects. I guess that's the game when you have an autoimmune disorder.
I think the most upsetting thing that happened this month was that I had to cancel my trip to the TMA conference in Seattle , WA . I was really looking forward to it. However, I just wasn't up to it. It is one thing to drag my body through the airport for work but another to voluntarily do it when I feel bad! I just didn't have it in me. I used to spend a lot of time in Seattle on business and I was really looking forward to the trip. Seattle is such a beautiful city. I love the restaurants and the shopping. Oh well, I'll find another reason to go there someday.
 September 21st is Myositis Awareness Day and here in CT a family in Newtown held a fund raiser. Their daughter has Juvenile Dermatomyositis JDM. The event was held at a local gym. The owners of the gym donated it for the day. There was something for the whole family. There was a Spinathon (For people without Myositis), a silent auction, and a photographer to take family photos. Chris signed up for the spinathon and was surprised it was a lot harder than he thought. I helped out by selling Myositis T-shirts and magnets. The fund raiser was very successful for a first time event. Life always has a way of making you appreciate what you have instead of focusing of the negative. Here's a child who has Dermatiomysitis and who has been robbed of the carefree, trouble free childhood most of us enjoyed. I felt so bad for her and you could see her family felt every bit of pain she was going through and then some. It is one thing for an adult to go through this it's just so sad to hear about kids who have to deal with something like this. There are about 5,000 kids with Myositis. If you want to learn more about Juvenile Myositis there is a wonderful foundation called Cure JM. Their website is www.curejm.com . There is also information on the Myositis website too at www.myositis.org .
 The balance of the month wasn't so bad. I can tell I'm getting better I just have to be patient, something I still haven't learned over all these years. I know the drug Rituxan works for me I just need to give it time. So Chris and I tried to keep busy without wakening up the BEAST (the BEAST is what we call my cough). We spent time boating and gardening, two thing we both love and they're easy to do. I have perfected the art of relaxing!
August, 2007
Finally approved for Rituxan! The lovely United Health Care waited until the last moment to approve me. I was so bad the Doctor called UHC and said she was at a complete loss of what to do and was about to admit me to the hospital if they didn't approve me. I was approved 20 minutes later. My breathing is restricted to very shallow breaths (I sound like Darth Vader on his last legs) and I have muscle pain everywhere. It's amazing how fast my body can deteriorate. I'm so mad at myself for not fighting for Rituxan approval when I was feeling good, instead of waiting until I was feeling so bad. It was my optimistic side hoping I was cured and no longer needed the drug. I couldn't have been more wrong.
 So now I'm starting all over again, filling my body with Rituxan. I have taken four intravenous treatments a week apart with a maintenance treatment scheduled for 3 months from now. I can't say I feel much better yet, but I remember that it takes some time for the drug to “kick in”.
I had a very scary call. At a dinner in New York City with colleagues and clients I noticed I was drinking more water than normal. I felt bad that night, but somehow my body knows how to get through the event and crash later. I left the restaurant about 10:00 pm, which is really late for me, and called Chris to tell him I was on my way home. I was tired at the time but didn't feel the hour and a half drive would be too much. About 2 miles from my house, my throat started closing up and it felt like I was having an allergic reaction to something. I turned the A/C on as cold as I could get it and contemplated pulling over and calling 911. I didn't because I was only 2 miles from home and it would have taken much longer for them to get to me than for me to get home. I pulled into the driveway and Chris met me and helped me into the house. When I got undressed I noticed my legs were almost twice their normal size. All the water I was drinking at dinner was pooling in my legs. I felt horrible. Chris asked if we should call 911. I didn't have it in me to go through the ER scene. I just wanted to go to bed. In the morning when I woke up the swelling had gone down, but my breathing was not much better. I called my Doctor and they said to go to the hospital. Based on my previous trips to the hospital, I told them it would be better if I came to their office. When I arrived in the office they swarmed around doing a battery of tests, EKG, O2 saturation, blood pressure, etc. I explained the swelling to them and they could hear the problems I was having with my breathing. After about 20 minutes of testing, Dr. Berard went across the hall to talk with my lung doctor, whose office happens to be in the same building, only to find out he was on vacation. When Dr. Berard returned he asked me what I normally do when this happens and with deep regret I told him Solumedrol. So he gave me 125 mg. I get steroid myopathy so I can't take high doses of the drug long term without suffering the side effects. For me the side effects are I can't walk. I called in sick that day. I felt so bad all I could do was sleep.  All month I haven't been able to do much activity due to my breathing difficulties. If I get too worked up I go into a coughing fit which sometimes ends with me throwing up. Thank you United Health Care for the unnecessary pain and suffering you have put me through. A week ago when I received the letter approving me for Rituxan there was a sentence that said “..sorry for any inconvenience this may have caused you.”. If they only knew!
 Since I was restricted from a lot of movement and activity, Chris and I decided to take some time off to rest and relax. We took our boat on a trip up the Hudson River , a trip we took a couple of years ago. It's perfect for some R&R. However, the first day didn't start out that way. The seas were 3-4 feet and it was raining for the leg to New York City but they calmed as we went through the city and got into the Hudson River . The rest of the week was relaxing as we slowing made our way up the river, stopping at small towns along the way and enjoying nice dinners along the river and meeting interesting people. The trip was good for me. It was very relaxing and helped me keep my mind off how bad my body hurt. Sitting all day on the boat reading and enjoying the view was a lot better than laying in bed feeling sorry for myself.
 The very important lesson I learned this month was to get approval for your medication even if you're feeling great!
July, 2007 
Chris and I celebrated our 3 rd anniversary on the Fourth of July in New York City at my friend Sue's beautiful apartment. We had a spectacular view of the fireworks display on the East River. It was so nice of New York to throw such a spectacular fireworks display in honor of our anniversary and that other small event.
Around the second week in July my symptoms started to come back. So much for being normal... I'm now in desperate need of a Rituxan treatment. Muscle pain, coughing, all the usual symptom of a flare up. During this flare up I'm not as freaked out as I've been in the past as I know there is a drug out there that will work. My last treatment of Rituxan was December 2006. My next scheduled treatment was March 2007, but because my company switched insurance company the treatment has been denied. My doctors wrote letters, however, I didn't get involved that much as I was feeling pretty good, a big mistake on my behalf which I am now regretting. Now I have to write letters, talk to lawyers, and talk to the CT State Attorney General's office just to get approved for a drug that I had been on for two years doing extremely well. I know without a doubt that I will get approved, I just have to go through a lot of ridiculous hoops first.
 In the mean time…I'm still enjoying life. I went out to CA on business, again, and this time I traveled with one of my best friends, Christie. We had such a great time. We stayed at fabulous places and walked every morning, exercised and just enjoyed each other's company. It didn't even feel like work! We did have a couple successful meeting, and it was one of the most enjoyable business trips I've been on.
Christie is a phenomenal friend of mine who I met through work. I've known her for twelve years. She lives in Big Bear, CA with her husband Robbie. Christie is one of those peoples who always has it together. She works full time for our company as an editor. She writes and publishes her own books, which are great by the way (The Magical Man List: A Romantic Comedy About Finding Your Soul Mate). She is an artist, she designs and makes her own jewelry (check out her website http://www.nurturepeace.com) and she volunteers for every organization out there. But most of all she is a phenomenal friend. She has helped my get through some really hard time and she has been there for some really great times too. So, Christie, if you're reading this, I love you, you're the best!
 If you've been reading my update you know that Chris and I went to Istanbul , Turkey to celebrate my birthday this past January. While we were there we met a carpet salesman, actually many carpet salesmen, but this particular one volunteered to come to our house. At the time I gave him my email address and said “fine” never thinking he would follow up and actually show up. A few weeks ago I received an email saying he was actually in New York and would it still be OK to come to the house to have a “carpet party”. I agreed and it sounded fun so I called everyone I knew and told them that the Istanbul Grand Bazaar was coming to CT. Sure enough on Saturday morning a big Ryder truck pulled into my driveway with two guys from Istanbul with a truck full of carpets, bed covers, pillow covers, table linens, purses, scarves all hand made in Turkey . Before I knew it, my lawn was covered with beautiful carpets. Tables were set up with all kinds of beautiful stuff and people were swarming around. The sale lasted a few hours after which we invited the guys for dinner. We had a nice dinner sitting outside, enjoying the beautiful evening and exchanging life stories. When they left, Chris and I commented “How great is life, now we have two friends from Istanbul ”.
PS If you need a carpet I can send them your way. 
June, 2007
Wow what a month!
 I received a copy of my blood work around the first of the month and it was all NORMAL with the exception of the Anti-jo 1 antibody being out of range. This was the first time all my blood work has been normal since I've been sick. It's very exciting. It's like getting straight A's in school. Having normal blood work is just confirmation on how well I'm doing. It's so exciting to see nothing in the out of range section.
Another very exciting event was that I took United Health Care to small claims court and won! Yes, I won, and yes, you can take the big guys to small claims as long as the amount you're suing for is $5,000 dollars or less. The lawsuit that I filed against UHC was for take-back money that they took back from my doctor after they had already approved and paid for the treatment. A few years ago UHC approved me for Remicade and over a two year period I had taken twenty seven or so treatments. UHC paid for all of them without any problems. Then one year after I stopped taking Remicade UHC decided they we're not going to pay for three of the treatments. So they started taking money out of my doctor's account. At that time my doctor asked me to step in and help him recover the money. So, he charged me for the money that UHC pulled out of his account and I then filed with small claims court and the rest is history. It took a little over two years before I had my day it court, but what a day it was.
 The Healthcare system in the country is for profit…. With the exception of some providers. This is one of the reasons why it's so hard to get approvals on drugs that are outside of the norm. The insurance companies do not want to spend the money if they don't have to. But I have found if you don't give up, and you have doctors on your side you should get the drugs that you need. I don't ever let the insurance company tell me what drug to take or not take. It makes me crazy when their doctors deny me treatment and they haven't even seen me. My experience has been if I keep fighting I'll get approved.
 I went out to northern California on business for a week and was able to spend a few days with my mother, my brothers and their kids. I even found myself doing yard work in my mother's yard. I have a lot of energy lately. By the way, if you've been following my updates you know that my mother had stage III lung cancer, but is currently doing very well. She has gained back the weight she lost and her hair! She looks great.
 At the end of the week I headed to San Diego to meet up with a few other clients. I also got a chance to see Chris's son Jason's newest son, Hudson, and the rest of the family. Hudson makes three for Jason and Karry. What was amazing was all the different little personalities the kids had. Between all the children in my life I feel like I'm living the fairy tale of Snow White and the seven dwarfs. There's Bashful, Sleepy, Grumpy, Happy, Sneezy, Dopey and Doc and they all know who they are….
 When I returned home I needed to really rest and catch up on my sleep. Although I'm feeling great I don't want to over do it. Everyday I have to find time for myself, time to let go and relax and enjoy this time in my life just as it is.
May, 2007
 In the beginning of the month I attended my annual trade show in Milan, Italy and was surprised how well I held up. I was mainly concerned about how I would do on the flight. It's about 8 hours from New York to Milan, and it's the “redeye”. Normally I don't have a problem with that, however, with my clamshell brace for my healing broken back I was concerned I wouldn't be able to sleep. I don't function very well without my 8 hours of sleep. I boarded the plane with all my travel equipment (slippers, PJ's, eye patch, blanket, pillow, I-pod, Bose acoustic noise canceling headphones, water, snacks, airborne, vitamin C, tooth brush, tooth paste, moisturizer, sanitizer, No Jet Lag and sleeping pills) and all my colleagues laughed at me until we arrive and they saw that I was rested and ready to go and they looked like they had been up all night. I even surprised myself on how well I did on the flight. I feel asleep before we even took off! The trade show was very successful. I was busy and had more energy then previous years. The food of course was spectacular, and I found some new fun eyewear.
After returning from Italy I went to see the back doctor and he said the break was fully healed and I could return to my normal activities, including returning to work. I thought that was funny as I hadn't missed a day. It's hard to shake that type “A” personality.
I'm really enjoying this remission period. Since I've been sick, I've never felt this good. I'm down to 4mg's of prednisone and I don't feel the effects of Polymyositis at all and my breathing is stronger than it has been for years. I've been going to Yoga five days a week in the morning before work, the gym with a personal trainer twice a week, physical therapy for my back and Chris and I have been swimming at the “Y” a couple of night during the week. Again the type “A” personality kicks in.
May is always an exciting month for us. New England comes alive and so does our backyard. With all my new found energy, Chris and I have been spending a lot of time in the gardens. I can't tell you how fun it is to do the work instead of just watching from my zero gravity chair. We've been planting, weeding and building stonewalls. The yard is starting to look amazing. In between all the yard work we've found time to enjoy a little Aqua Therapy too! 
April, 2007
 My Polymyositis and Pulmonary Fibrosis have been under control for six months now and I'm only taking 5mgs of Prednisone a day. Could my diseases be in remission? I'm almost afraid to even say the word remission, out of fear I might jinx it somehow. My last treatment of Rituxan was December. I should have taken a treatment in March. However, I'm still battling with my new insurance company for approval. To be honest, I am really not fighting as hard as I have in the past. Part of me really doesn't want to take the drug because I'm feeling so good, and part of me knows if my health heads south and the treatment isn't available I could run into a lot of problems. Plus I can't let the insurance company dictate what drugs I can and can't take. So I'll continue the fight until I'm approved, then I'll make the decision on whether or not I should take the drug. At least it will be my decision and not the insurance company's.
I broke my back on February 10 th and I'm very surprised at how fast it's healing. I've been on Prednisone for almost ten years and one of the side effects is bone deterioration. This was a concern that the doctors had. I'm happy to say that's one side effect I don't have. The reason my back broke (Burst T12) is I fell on it with tremendous force in a boating incident. Prednisone had nothing to do with it.
 I can't say is has been a smooth road to recovery. The Friday before Easter Sunday I was experiencing all kinds of pain. I couldn't understand why my back was hurting more that usual, and my stomach wasn't feeling much better. I thought I was coming down with some kind of bug. That night I had two of the grandkids over to dye some Easter eggs. That was a bad idea! Only someone without kids would volunteer to dye Easter eggs with kids under four years old. I think there was more dye on them than the eggs, not to mention the kitchen. I was feeling horrible but somehow I sucked it up and got through it. I have great photos of them so it was worth it.
The next morning I wasn't feeling much better so I told Chris I was going to go to the walk in clinic and see if they could find out what was wrong. I though all I needed was an antibiotic and I would be on my way. No, that would have been too easy! I explained my symptoms to the doctor and she poked and prodded around. Then she looked at me and said you need to go to the emergency room! What! Can't I just get an antibiotic and go home!
 An hour later I was hooked up to an IV bag waiting for test results. Four hours later the doctor informed me that I had two kidney stones and one of them was 5.5 millimeters and it should be zapped in a few weeks if I didn't pass it. The medical term for zapped is Extracorporeal Shock Wave Lithotripsy( ESWL ). Well two weeks later I had to return to the hospital for the ESWL treatment. The good news was they couldn't find the stones so they sent me home. After the initial pain I felt okay for the two weeks before I went back to the hospital. I guess they broke up on their own or somehow I passed them without noticing it.
Since I'm kidney stone free and my PM and PF seam to be under control I'm headed for Italy for my annual tradeshow. Ciao! March, 2007:
 Today is March 31st and I'm amazed at how fast my back is healing. I actually broke it on Feb 10th. I can't say that I'm 100% healed, but I can say that the pain is not nearly as bad as it was a month ago. Don't get me wrong, I still have pain and I'm still wearing my “turtle suit”, but I'm able to walk around now and I don't have to sleep in the shell anymore. The first six weeks I had to wear it 24/7 and I was on bed rest. Each day I get stronger and stronger with a little help from the grandkids.
The most amazing thing through all this is that my PM and PF have been totally under control with only 5 mg of prednisone a day and the last time I took Rituxan was over 4 months ago! I was scheduled to take Rutixan every three months; however, I'm in another struggle with the insurance company…the never ending battle! I've learned over the years to never let the insurance company dictate what drugs I can or cannot take. They always say “no” the first, second and sometimes even the third time, but eventually I get it approved. The amazing thing is that I don't think I need it right now. I think the trauma to my back has given my immune system something else to do. Who knows? Maybe the trauma has sent my PM and PF into remission. Stranger things have happened!
I've been bummed out a little with this setback to my exercise routine. Before I broke my back I was going to yoga six days a week and the gym twice a week. I was really on the road to recovery. For the first time in ten years I was really starting to feel like a normal person. Once this hit I think the thing that upset me the most was losing the ability to work out on a regular basis. However, I have to say that I did start private lessons in yoga last week. Val, the owner of the Shala Yoga Studio, has offered to help with my recovery. For whatever reason, I feel such a strong connection to the studio. This has not only helped me physically, but mentally as well. So thank you so much Val for helping me through this period, it really means a lot.
On top of that my husband has helped too. When I was first injured he knew how important yoga was to me. So he bought a book on yoga for the back, and he lit candles in the living room and had Kirtan music playing in the background. He had me lie down and he read the various postures I could do with an injured back. When Chris does things like this, it makes it easier to get through, not only PM and PF, but any obstacles which get in my way. I'm reminded daily of how lucky and blessed I truly am to have him in my life.
 If you've been reading my updates on a regular basis you know that March is a very important month for me. It's the month of my industry's trade show in New York City , and this year was no different, okay a little different. I had a turtle suite on and a got around on a little red scooter! This year it was really important for me to attend the show mentally because for the 1 st time my illness (broken back) was visible. Over the past ten years I've done a great job in hiding my illness from a lot of people I work with, mainly my clients. This was the first time anyone would really see me sick/injured. I've done this show many times with PM and PF flare-ups, with IV' lines attached to my arm under my suite, and even with shingles, none of which were visible. I felt I needed to attend this show. I thought I needed to show everyone I was fine and would be okay, but what I realized was that I needed to show myself that I was okay and everything would be fine. I realized this when my boss pulled me aside and told me thanks for showing up and doing this and that I really didn't have to. That's when I realized I was doing it for me not for the company and yes, I did have to show up. I was doing it so I wouldn't lose faith in myself. I was showing myself that I can get over whatever happens in my life, if I just get back up, brush myself off and keep going even when it's not easy. I realized I can't give in because if I do the whole thing might tumble down, and I can't let that happen. So I keep going, even if it's in a turtle suite!
February, 2007:
February started out on such a high note and ended in complete disaster. Jason, Chris's youngest son, finished his tour in Iraq and made it home just in time for the birth of his third child, Hudson Stone, making Chris and I grandparents of five now! More good news, my mother's stage III lung cancer is in complete remission. She's a remarkable woman with great strength. I think I get a lot of my strength from her.
Now for the exciting part of the month. Chris's brother Jim and his wife
Ariane have been building a house on the water in St. Thomas for over two years. They finished it and moved in last fall and we've been looking forward to visiting them once it finally got cold here in Connecticut . When we left JFK the wind chill factor was zero and four hours later when we landed in St. Thomas it was 80 degrees and sunny. Jim and Ariane picked us up at the airport and we were excited about seeing the house now that it was finished. The house sits on the northeast part of the island and has a beautiful view of St. John . The house is magnificent and has beautiful views of the turquoise water from all the rooms. We stayed in the guesthouse and were awakened each morning by a beautiful sunrise and the sound of the waves crashing on the rocks below. 
I went to a Yoga class with Ariane and was excited because my health was the best it's been in 10 years. The Yoga class was amazing. It was outside on the deck of a bungalow with a view of the ocean. I was a little disappointed it wasn't Astanga, but nevertheless, it was a good workout. We relaxed around the house for the rest of the day, enjoying the pool, hot tub and magnificent view. I also got a little work done. We grilled fresh fish and vegetables and had a delicious dinner as we discussed our boating plans for Saturday.
 Saturday, we decided to go boating and headed to the far side of St. John for some snorkeling. We saw some amazing starfish–they were so big–and many brightly colored small fish around the coral. I swam and snorkeled for over two hours and was amazed at how strong I felt and at my endurance. We were getting hungry so we all got back in the boat and headed for the British Virgin Islands , a place called the Soggy Dollar in Josh Van Dyke. I was sitting on the bow of the boat getting some sun. Ariane was sitting across from me while everyone else was further back on the boat. The conditions were relatively smooth. Then completely out of the blue we hit a big wave that sent me airborne and I came crashing down landing on the middle of my back. The second wave sent me crashing to the deck of the boat. While I was lying there I was thinking that this is really going to hurt, and just then the pain kicked in. When I tried to move, I felt unbelievable pain shooting down my legs and my back was throbbing. When the boat stopped, Chris was standing over the top of me asking if I could move. I tried to roll over but couldn't. It just hurt too badly. I thought, “Oh my God, I broke my back.” Then I decided to try to wiggle my toes, and I could, so I knew I wasn't paralyzed. Chris helped me slowly get back on to the cushion as I screamed and moaned the entire time. Ariane called “911” and they said they would meet us back at the dock in St. Thomas.
We were about 8 miles away and had to go very slow as any time we hit any waves, the pain was excruciating. I felt so bad that I was moaning and screaming because of the excruciating pain. The kids were scared to death, and every time I looked at Jim and Ariane they looked white, fear was evident in their eyes. I tried as hard as I could to control the screaming and moaning, but nothing seemed to work. I knew it was really bad when I saw Chris's eyes tear up and the fear and anguish in his eyes. Luckily, I had three 50 mg. tablets of Ultram, pain relief for polymyositis. It didn't feel like they did much, but they were better than nothing. I kept thinking that once I get to the dock, the ambulance would be there, they would give me drugs and the pain would go away. I couldn't have been more wrong.
An hour and forty minutes later we arrived at the dock and the ambulance was there waiting. As soon as I saw them, I asked for pain relief. They said first they had to get me on to a backboard and then onto the stretcher and into the ambulance. I knew the pain was going to be horrific. I dragged my body on the board, screaming the entire time. They lifted the backboard onto the gurney and started to strap me in. Pain was shooting in all directions. The pain was awful. People were coming out of boats, cars and restaurants to see who was causing all the commotion. Finally they got me into the ambulance. Immediately the air conditioning in the ambulance felt great. They gave me oxygen, took my blood pressure and other vitals while I continued to ask for pain drugs. They eventually told me they didn't have any. They took my blood pressure and looked at each other. I explained to them that I always have low blood pressure, not to worry. They immediately got on the radio and called the hospital. My blood pressure was 185 over 165. I heard the voice over the radio say “Get her here immediately.”
It took over an hour from when we got to the dock until we arrived at the emergency room. Chris was with me, explaining my medical history. At the emergency room they wanted to take me off the backboard and onto the examining table, but I refused, saying “Nothing until I get some pain relief.” They hooked me to an IV and started morphine and Demerol. It took eight units of morphine and two shots of Demerol until I found some relief. The thing that amazed me the most while I was lying there was the fact that nothing was hurting me but my back. I had been in the hospital so many times for Polymyositis when everything in my body hurt that it was strange to have the pain pinpointed to one specific area. They X-rayed me and informed me that I had a compression fracture of my T12 vertebrae. Basically I broke my back. Since I had no loss of feeling or numbness, they said I had not damaged my spinal cord. That was the good news, no, that was the great news! Then they informed me there was nothing further they could do. I could stay the night and share a room with another patient in a substandard hospital, or I could go home with my family and stay in a private guesthouse and have five people wait on me hand and foot, with a beautiful ocean view. It wasn't a hard choice. They gave me prescriptions for narcotic pain pills and the name of a back specialist to see on Monday for further consultation and a back brace.
 Monday we called the specialist only to discover he took the day off. So I spent most of the time on my back or in the hot tub, taking Cyclobenzaprine (a muscle relaxer), 800 mg ibuprofen and 100 mg of Ultram. I needed help with everything. I couldn't walk, use the bathroom or lie down by myself. It brought back memories of when I was struggling with Polymyositis. The only difference was that this time I had Chris by my side. Tuesday we called the specialist's office only to find out that the back brace had to be special ordered and wouldn't be “on island” for a week. Our best option was to get home. Wednesday we were ready to make the big trip, only to find our flight cancelled due to severe weather at JFK airport in New York . Thursday our flight was delayed but we made it. I wore a soft brace, took ample amounts of my pain medication, Chris bought me a first class tickets so I could stretch out, and we got wheel chair assistance throughout the airports.
Friday we saw Dr. Awad, a back specialist in Connecticut , only to find out that I didn't have a compression fracture, but a burst fracture, and that the fracture had deteriorated more since the original X-ray. At that time he thought that surgery might be necessary, but he wanted to see both a CAT scan and an MRI and he was concerned about doing surgery due to my history of Pulmonary Fibrosis. He told me to get off my feet immediately and he arranged for a fitting for a custom back brace that afternoon and scheduled both a CAT scan and a MRI for the following week.
The following week we meet with Dr. Awad to review the MRI and CAT scan and to determine if surgery was necessary. Chris and I both reviewed the CAT scan and MRI with him and were amazed when we saw it. I can be so unlucky and lucky at the same time. We could actually see how the break protruded into the spinal canal but did not touch the spinal chord. I was millimeters from the unthinkable. Dr. Awad presented my case at a meeting of other specialists to obtain other opinions as to the best course of treatment. I think if I didn't have Pulmonary Fibrosis it would be a slam-dunk, I would be heading to surgery but because of the Pulmonary Fibrosis, half of the doctors agreed that surgery presented a significant risk and that treatment would have to be the old fashioned way; back brace and a lot bed rest.
We're going back next Friday for another X-ray to see how it is healing. As long as it continues to heal, without deterioration, I won't need surgery.
So how am I taking all this mentally? I'm doing just fine. I had a melt down after we returned from St Thomas . I called it my “pity party”, you know the party, why me? Why now? Isn't PM and PF enough for one person to deal with in a lifetime?! Once I got that out of my system I knew this was just going to be yet another challenge and I needed to make the best of it. So while I was laying on my back one afternoon I came up with the super hero idea!
 It's a bird, it's a plane, no it's Unhealthy Woman! She can single handedly bring down an insurance company!
She has super disorders like:
- Polymyositis
- Pulmonary Fibrosis
- Raynaud's Phenomenon
- Cataracts
- Steroid Myopathy
- Ulcers
- Mitral Valve prolapes of the heart
- Hemorrhoids
- Constipation
- Anemia
- Presbyopia
- Broken back
- And yes, even cavities
But damn don't I look good!
Once I came up with this super hero idea I laughed for hours and it stills brings a smile to my face. That night I had Chris bring home a cape and mask and we laughed all night. With a sense of humor you can get through anything. January, 2007:
 After celebrating a wonderful holiday at home we decided we were up for a little adventure, so for my 44th birthday Chris and I went to Istanbul, Turkey. It was as exotic as it sounds. Istanbul is full of adventure, color and mystery. There is something special about seeing the modern world weve its way into the ancient customs and buildings. We saw laptops in the Grand Bazaar, cell phones in a six hundred year old Mosque and flat screen TV's in store windows. Yet we still saw people shopping in the outside market for their daily needs and most of the women walked around all covered up. The best part was the echoing chant throughout the city five times a day. THe chant is calling everyone to prayer. I think that's one of the things that makes Istanbul so special.
 We enjoyed the wonderful weather that we had taking boat trips to the Asia side, sitting in the outside cafes soaking up the sun, and of course waking around and shopping! However, somehow we escaped without buying a carpet and it wasn't due to lack of trying. I think we were asked if we wanted to buy a carpet about a hundred times a day! We spent time in the Grand Bazaar that's over three hundred years old, the Spice Market and just wandering the streets. We walked between three to four miles a day. It was great exercise. We also spent time exploring museums and Mosques too.
 Chris and I really enjoy traveling and exploring the world and I'm so happy that I have the strenght to do it. My health has really been under control these last few months and I'm enjoying every minute of it. My lungs feel strong and I'm regaining muscle strength everyday. The best part of getting better is seing the smile on Chris' face and the excitement in his eyes after we've spent a day walking and I'm still ready for more. He's aways telling me I'm getting hard to keep up with.
Chris and I met five years ago and I have been living with PM and PF for four years prior so he didn't know me as a healthy person. Chris has always believed in me and that alone has helped so much. He is always there and never makes me feel like I'm a burden in anyway. So for me it's so nice to show him the other side of Lenor. Althought I'm not entirely out of the woods and I'm still taking drugs, I feeling pretty luchky to be me.
I'm currently taking Rituxan every three months, 5mgs of prednisone every day, protonix every day and when I have pain I take ultram.
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