Despite the Holidays December was a quiet month for us. I had to go in early for my Rutixan appointment. The appointment was scheduled for early January. However, the company I work for changed insurance companies once again. This is the fifth time in eight years. I don't think they understand how difficult it is for someone that has a chronic illness. I've learned over the years it's all about money not what's convenient or what's best for the employees. So, as of January 1st I'll be back with United Health Care. It always takes several letters before I get approved for Rutixan so I thought it would be best if I took the treatment early and that way I would have a few month to work on the approval process.
I have been trying to decrease my Prednisone slowly. However, I can't get below 5 mgs without my lungs acting up. Once I'm down to 5-5 ½ mgs I find it's harder to breath and I start coughing right away. Once I'm back up to 6 mgs I'm fine, so for now I'm staying at 6 mgs. I'll give it another try in a couple of months. It would be really nice to be off Prednisone for good.
I'm still feeling very strong and I'm enjoying the gym and yoga. Last week I found myself in a more advance yoga class and it was quite the experience. With the holidays all the class schedules are all mixed up. I knew I was in trouble when I was stretching on my mat before class and as the room was starting to fill up I was noticing a lot of familiar faces from the more advance class (typically the more advance class lets out before my class starts so you see the same faces all the time).
This thirty year old tattooed woman put her mat right next to mine and she started to stretch out. She started the Ujjayi breathing right away. You could tell she knew what she was doing. It sounded like I was working out next to “Darth Vader”. When the class started she wasn't going along with everyone else, she was a little slower, which at first was bugging me. Then once we finished a couple of sun salutations she was in tune with everyone else. I realized she was slow because she was just warming up. In Ashtanga you are supposed to follow your breath and that was exactly what she was doing, following her own breath and the teacher was going too fast for her. She was so focused I don't even think she knew anyone else was in the room. It was really something to see. She could do all the poses and there are some tough ones. The most impressive thing by far was her focus. I learned more from her that day than any teacher over this past year. The strength in her breathing was really impressive. In Ashtanga the breath is always first and then the pose. So maybe I really wasn't in the wrong class, maybe I was there to learn how to focus and concentrate on my own breathing and not worry about what's going on around me!
We had a wonderful holiday. We had our traditional Christmas Eve dinner with neighbors and friends. Christmas morning we spend opening gifts and watching the dogs eat all the wonderful treats from Santa Paws and then Harrison and Emerson came over for Christmas part two at Pop Pop's and Mom Mom's. The highlight was Jason's call from Iraq . He told us he just received his package from us and he was going to share all the candy and cookies with his squadron. He also sent us a Freedom Flag that he flew over Iraq . It was a wonderful holiday. However, I always look forward to a New Year.
Cheers, to a very happy and healthy New Year!
November, 2006
November has slowed down a little for me. I didn't travel to any exotic places, just a day trip here and there. I think I just needed to slow down and just enjoy being home with my two dogs and my husband. My energy however is still going strong, that hasn't slowed down at all. It's amazing how much better I feel now that my iron levels are normal. I feel so strong now.
I've increased my yoga practice. I go to the “Shala” four to five times a week. I love every minute of it. I also work out with a personal trainer two days a week for thirty minutes. Her name is Samantha and she works at the YMCA. Sam's mother-in-law has Polymyositis. How weird is that? Sam has such an understanding of the disease. She understands what I can and can't do and that is always half the battle with a trainer. Sam has really helped me regain my strength. Chris and I took the dogs for a six mile hike at the “Gunks” in New Paltz, NY over the Thanksgiving weekend, they both burnt out before I did! So thanks Sam for all you help and support.
I'm down to 5 ½ mgs of Prednisone, 40mgs of Protonix and 25mgs of Hydroxyzine. I occasionally take Tramadol 50mgs if I have any pain or fatigue. Tramadol is one of the best drugs for pain that I've found. It doesn't leave you feeling groggy or high. It just takes away the pain and then you can get on with your life.
I'm taking Hydroxyzine for itching. Itching is a side effect you can get with Rutixan. Along with the itching I have found that I'm also allergic to every product that I put on my face. I've tried every cream out there, and nothing seams to work so far. My skin is dry and when I put something on it I have a burning sensation and my face turns red and blotchy. It got so bad this month that I had to go to the dermatologist. The dermatologist prescribed a cream called Elidel. Elidel is a cream that is typically used if you have Eczema. The doctor didn't think I have Eczema but he assured me this cream would work on my red blotchy face. However, Elidel isn't without its side effects. If you're interested in finding out more about the drug here's the website. http://www.elidel.com
While I was at the dermatologist he asked me if I had any other dry patches on my body. I immediately said no, and then I reached for my head and rubbed this lump on my scalp that I have had for a few months. Then I told him about it. I was a little embarrassed. I thought it was from a tick (from one of my dogs) or worse, a spot of mange! My dog Leo came down with a mild case of mange this past spring, and when I was researching it I found out humans can get it too. Needless to say, how embarrassing would that be to hear you have DOG MANGE! I wish you could have seen the doctors face when I was telling him what I thought it was. Once he took a look he told me it was not a tick bite or mange. My thought was thank God I don't have mange! Then he backed up and looked at me very seriously and said “I don't want to alarm you, but this is serious and I need to remove that right now and have it tested”. I asked him what he thought it could be and he took a deep breath and said, “Skin cancer”! I told him, wow, you know how to make dog mange sound good. I just had to laugh. Are you kidding me! Skin Cancer! But then I thought about it and it was something I could understand. I've been out in the sun my whole life and I don't remember ever putting sun screen on my head, and I just started wearing hats a few years ago. So I told him to go-ahead and remove the lump. A few minutes later a patch of skin was floating in a small jar with my name on the side of it. He told me he would call me next week with the results. He also referred me to a doctor at Yale he wants to test me to find out what exactly I'm allergic too. My appointment isn't until the end of January.
I came home and talked to Chris about the new discovery and we both agreed I could use a pass on this one. We waited four or five days and the test results came back…negative for cancer. Well someone was hearing us; we got that pass we were hoping for.
October, 2006:
On October 16th I had my seventh treatment of Rutixan and this drug, by far, has been the best one for me. My Polymyositis has been under control for three months now. I'm down to 6.5mgs of Prednisone daily and I'm feeling great. My next treatment of Rutixan isn't until January 2007. I've been taking some sort of Chemo every month for almost nine years now and it's such a thrill to give my body a few months off. I feel I'm getting closer to remission.
With my health on the mend I've been doing all kinds of fun things with all my newfound energy. I didn't think life could get any better after last month's big exciting sky diving trip, but if life has shown me anything it's that there is always a bigger adventure right around the corner.
So the latest adventure started out when my very dear friend Camilla e-mailed me one day and ask me if I would like to join her on a birthday weekend in Mexico with the girls. Her wonderful husband Raffi came up with the idea and felt she could use the break. Camilla recently gave birth to her second set of twin boys. Yes, two sets of twin boys under three! So you could see why the weekend was so important to her. Just thinking about getting through the day with four babies under three exhausts me.
Five of us flew to Nancy 's vacation home in Careyes, Mexico. This is a place that most of us just dream about. The villa sits on the side of a cliff with the Pacific Ocean beating at the rock below. It was something right out of the pages of Architect Digest. The view was a picture postcard in every direction.
The staff at her home waited on us from the moment we arrived. It was like staying at a Five Star Resort, only better since we were the only people there. We had spa-like meals and they made me virgin margaritas. Every night we toasted the sunset with a margarita and watched it sink into the Pacific as we munched on fresh guacamole and homemade chips.
We took tons of photos. There is nothing like getting girls together with a digital cameras. I have to say Kim, Sis, Camilla and Nancy dressed up for every event. They looked beautiful all the time. I'm a little more laid back with a tomboy look, but I gave it my best shot.
The best part of the weekend was everyone was reflecting on life. How important our husbands and children are to us. How blessed we are to spend six day together in such a special place without a worry or care. It was truly a special weekend. It's not often that women can get away without husbands or kids and just spend time together and enjoy each other's company. When it was all over and time to go home, we were sad to be leaving but happy to be heading home, well rested and partied out. We were ready to return to our regular lives with a fresh outlook on life and family.
Happy Birthday Camilla and thank you Raffi, Nancy and Jim for such a special weekend. It was one I'll never forget!
September, 2006: Skydiving!
Chris and I went skydiving (tandem) for the first time last week. It was by far the most exciting thing I've ever done. Yes, even with PM and PF I went. My thought was how hard could it be to jump out of a plane? Oh my God was it fun! We enjoyed it so much we'll be doing it again very soon. I know it sounds nuts to some of you, but it is such a thrill and what an experience it was. The free fall was about one minute long and you are dropping at a speed of about 120 miles an hour. Once the chute opened up it took about five minutes to land.
Skydiving was something on our list of things to do and I'm so happy we did it. It was my birthday present to Chris. The place we jumped at is called The Ranch. It's in upstate New York , and it's been around for years. It's close to New Paltz. When I was younger I use to rock climb in New Paltz at a place called the Gunks, so just driving around up there brought back some great memories.
There is a seven page waiver that you have to sign, which I think a lot of people back out after reading it. Every other paragraph is “you could die, it's on you” and so on and so forth. When it comes to things like that, my thought is I'm going to do what makes me happy and what I want to do, because we're all going to die someday! So I enjoy life and live it to the fullest and I try not to let the fine print freak me out.
Once our tandem instructors went over everything with us it was time to board the plane. We said our goodbyes to a few friends and Chris' son Kevin and his wife Christine and the two grandkids that came to see “pop pop” and ‘mom mom” jump out of a plane. Little Harrison told us not to end up like a pancake (he's only three) and Emerson was upset he couldn't go with us but, it didn't stop him from trying on the gear.
When we boarded the plane there were about twenty people on board, most of them solo divers and most of them in their twenties. The energy in the plane was unbelievable. Everyone was so excited. If you could bottle that energy you could sell it for thousands of dollars. It was such a high. After takeoff, everyone chants, and that just created more energy and more excitement. On the flight up I found it very funny that we had to wear seat belts. However, when we reached 13,500 feet it was okay to take them off once the door was open!
Chris jumped first, after all it was his birthday. If you see the video you'll see him just fall out of the plane. It was very strange watching him jump. I thought, Lenor, what a dummy! You married the man of your dreams and then you buy him a ticket to jump out of a plane at 13,500 feet. What were you thinking! When it was my turn, I got up to the door and the wind was on my face and I couldn't stop smiling. It was such a great feeling. I was waiting for this big rush of fear, but it never happened. Once I jumped I thought I would be freaked out for a minute, but I thought don't worry the chute will open and you'll be fine. As I was free falling I was waiting for the fear and it never came over me. It was very strange. Once I realized it wasn't coming it was like total freedom and so in the moment. It was such a rush and so awesome. Never in my life have I had such a thrill. It was such a memorable time. When the chute opened up and my instructor asked me how I was doing I told him I was having the time of my life. When we landed I was so excited to hear that Chris enjoyed it as much as I did. We're doing this again!
Here's an email that I received after I emailed all my friends photos of us skydiving. This email is very special to me. It came from one of my closest friends. We go as far back as first grade together, so thanks Anita!
"Dearest Lenor, you have NO idea how happy this makes me!!! The activities you have the endurance to do now are like you are back to your old self and that brings such a pure delight to my heart!!! You have faced your challenges with the bravest of hearts and have always found something “positive” about your illness and trials so it is truly a blessing to see you reap rewards of good health".
Video of Lenor Skydiving
Video of Chris Skydiving
Myositis Conference, 2006:
Chris and I attended the Myositis conference this year. This is the second conference that we've been to. I have to say it's a lot easer the second time around. The first conference I walked around in disbelief. Wow, these are my people! I have lived with Polymyositis for years and had never met anyone else face to face with the disease before the first conference. I had exchanged emails with a lot of people. However, last year was the first time I was face to face with someone with Polymyositis. I walked into a large room of about two hundred people and half of them had one type or another of Myositis. This year it was a lot easer. I walked into a room and saw a bunch of friends.
The conference was in Orlando this year. The weather was great. Chris and I just missed the hurricane. As a matter of fact the remnants of the hurricane's wind and rain were in Connecticut , so being in Florida was a special treat for us.
The theme of the conference this year was health and fitness. There were classes on exercising both in and out of the water, stretching and strengthening and there was a Tai Chi class first thing in the morning which was very nice. There was also a holistic health class and a nutrition class for chronic disease. I found the conference this year very educational. The only disappointing thing about the conference is it is a reminder of how rare this disease really is, and how little anyone really know about it. There is little research being done, and it's not because no one cares. It's because there are so few of us and very little money. Even if someone comes up with a cure, it's not going to make the evening news. I think it's very important that we stick together and find ways to raise money for the Myositis Association so they can work on finding a cure. So if you have not joined the Myositis Association you should, it's a great organization and a lot of great people.
August, 2006:
Wow! You can do so many things when you have the energy! For the past few years I've been suffering from anemia, and for the first time it's under control. My red blood cells are normal and what a difference it makes. I had always thought my lack of energy and fatigue was due to the Polymyositis, but I was wrong. I think most of my fatigue was caused by the anemia. So after five treatments of Venofer my energy level came back, and wow, what a difference it makes.
I had tried a lot of different things over the years to cure the anemia. Iron pills, herbs, eating tons of protein and for the last six months I was going into the doctor's office twice a week for a shot of Aranesp. I even changed my diet. I was a vegan for 28 years and two years ago I started eating fish to see if that would make a difference. I even considered eating red meat. The doctors told me it wouldn't make a difference. My anemia is cased by all the Chemo that I've taken over the last seven years, and eating additional protein wasn't going to help. I would have eaten a whole cow if it would have made a difference. It's amazing how a chronic illness can change us over the years. You'll do anything or try anything to get healthy. (I'm pretty happy I didn't have to eat a whole cow).
With all this newfound energy I've been putting it to good use. I've been walking forty five minutes a day with the dogs, and on the weekends we've been taking them to parks and walking for a few hours or so. I've been going to the gym twice a week, swimming and participating in Yoga class once a week. I still have to take each activity slowly, but I'm so excited I have the energy to enjoy them. I'm even staying up past nine thirty. My husband is telling me, it's getting hard to keep up with me.
This month was Jason's first month in Iraq. Chris and I tied a yellow ribbon around an oak tree. The ribbon is there until he's home safe and sound. Everyone in the family has one on their door or around a tree in their yard. We also tied one around the dogs, but they were adamant the ribbon was coming off right after the photo!
One rainy afternoon Chris and I baked cookies for Jason and his squadron. We had to pack up the cookies and ship them out the very next day. They're so tempting, but with Chris as a diabetic and I can't eat sugar because of the prednisone, cookies are something we don't have or need around. So, off to Iraq they went.
July, 2006:
Three years ago I went into Anaphylaxis shock with my third treatment of Remicade. Well it happened again! This time the drug was INFeD. I was given INFed with the hopes it would help balance and restore my iron. I've been
suffering from chronic anemia for years now, and nothing has been working.
There are many types of anemia. My anemia is caused by chronic illness. I've
had Polymyositis for over eight years now, and the inflammation caused by
the disease over the years has interfered with the production of my red
blood cells, resulting in chronic anemia.
INFeD can only be giving in a hospital. That should have been my first sign!
So on Monday, July 3rd off I went for my treatment that should have only
taken a few hours. I arrived at St. Vincent's Medical Center and proceeded to the infusion center. They admitted me and asked me to be seated in one of the chairs. As the nurse was preparing my IV line, I started asking her questions about the drug and how long it was going to take to administer. It was a beautiful sunny day and I wanted to get out of there. I think she thought I was getting nervous so she told me not to worry, reactions are very rare. I just knew she shouldn't have said that!
She hooked up the IV line and told me I would receive a small test dose
first. This test was to find out if I would have one of those rare reactions. The
test dose would be done without any benadryl or Solumedrol, just the drug
alone. I would receive only 0.5 ml. and when I was finished with that I
would have to wait one hour before the full dose was given. If I didn't show
any kind of allergic reaction after the first hour, then I would be all set
to take the full dose. That dose takes about four hours.
INFeD looks like rusty water in a bag. I was asking the nurse if she could
take a picture for my Web site before I went home. Then she inserted the
line of INFeD into my arm and in less than a minute I started to feel my
chest tighten. I knew exactly what this feeling meant; it was a feeling that
I've experienced before. I immediately told her to turn it off. She took one
look at me and knew. Before I knew it, I was surrounded by nurses and they
were shooting all kinds of stuff into my IV line. My chair was being wheeled
to the oxygen lines, and all kinds of yelling was going on. I just sat still
with my eyes closed. I just said to myself, pursed breath, just keep
breathing. Pursed breathing is when you put your lips together and take very
short fast breaths. I knew if I panicked it would only make things worse. I
told myself to just keep breathing. It took me a few minutes before I opened my eyes and looked around. Then I noticed everyone in the room was looking at me. I looked up at one of the nurses and I asked her if she got a picture of that! It took a second or two before she knew what I was talking about and then she started to laugh and told me "NO, I was a little busy"! I had to call Chris to come and pick me up, they would let me drive home.
Anaphylaxis is an allergic response that lowers you blood pressure and
dilates blood vessels. Swelling occurs in the bronchial tissues of the
lungs, causing you to choke or loose consciousness.
I didn't want my little episode to spoil the special weekend we were having. The Fourth of July was the first time all four grandchildren were together at one time so it was very exciting. They're all under three! Chris' son
Jason and his family were visiting from San Diego. Jason is a Marine and is leaving for Iraq next month so we thought it would be a very special weekend if we had everyone together. Jason flies F-18 Hornet jets and he'll be in Iraq for six to eight months. To make the weekend even more special, Jason and Karry also announced baby number three is on the way, so that will make us grandparents of five! Wow!
We were also celebrating our second wedding anniversary. We were married on the fourth of July two years ago in our backyard. These two years have been the best years of my life. We spent the weekend swimming, boating, eating
and just enjoying being together. It turned out to be a very fun and exciting weekend despite my event at the hospital.
After everyone returned home, our life got back to normal. The doctor's office called with a new drug that he would like me to try, Venofer. This is an IV iron sucrose that is easier to handle. The only downside is, instead of one infusion that could last six months to a year, I'll have to take five infusions for the same results. So, back to St. Vincent 's I went. They were totally prepared for me this time. I had all kinds of extra bags just in case I needed them. I didn't, everything went very smoothly. After the first two treatments I was still so tired I could hardly get out of bed. Then it kicked in, my energy is slowly coming back.
I wanted to thank the nurses at St. Vincent's Medical Center for coming through when I needed them the most!
June, 2006:
By the second weekend of June I had finished my third treatment of Rituxan. My hospital visit last month was becoming a distant memory, and I was starting to feel more like my old self again.
Chris and I had been planning a trip with our neighbors Lui and Emily to their hometown in northern Italy . I decided to go despite my heath issues. This was a decision I will never regret and the Rituxan made it all possible.
Carisolo is a small village that sits at the base of the Dolomite Mountains in the Italian Alps. The place is unbelievable. All the homes had beautiful flower window boxes in every window. The view was spectacular in every direction. I couldn't have dreamed of a better place to recover. But, what really made the trip special were the people. Lui and Emily's family and friends really made Chris and I feel right at home.
One evening we had dinner with Lui's cousins at a mountain top hideaway. The setting was something right out of a magazine. The summer cabin sat high on the hill side surrounded by wild flowers, and pine trees overlooking the valley with breathtaking views of snow caped mountains. The table was filled with cheeses, meats, and of course red wine. Diego was making fresh polenta over an open flame so the smell of wood was is the air. Sitting there over looking this spectacular view I realized how truly lucky I really am. Just three weeks earlier I was in the hospital, and here I was sitting on top of this mountain enjoying an amazing evening. Chris and I toasted to living each day to the fullest.
Venice was only a two and a half hour drive away, so we decided to go for a couple of days. Venice , Italy has to be one of the most special places on earth. We had such a great time just enjoying the music, people watching and of course the unique scenery.
When we returned home I went in for my fourth treatment of Rituxan. The plan is to have one treatment every month until my blood work is all under control. Once it's under control I'll start taking Rituxan every six weeks and then every eight weeks and then go from there. I'm going to go down to 9 mgs of Prednisone and then next month alternate from 9 to 8 every other day. When tapering off Prednisone I need to go extremely slow otherwise I'll have a flare-up, and I really don't want another one of those.
May, 2006:
Where do I even start! I guess if I use the weekends as a timeline it will be easer to follow. The first weekend of May I was feeling great. I traveled to Italy for my annual tradeshow in Milan . The weather was great and the food was even better. My trip was an overall success and to top it off, I found some fun sunglasses to make it even better.
By the end of the second weekend my driveway was filled with, paramedics, police cars and an ambulance. The weekend started out as our first real gardening weekend of the year. I ordered five yards of gravel that we needed to spread throughout the flower gardens, walkways, and the pond. Chris decided he would spread the gravel for a little extra exercise. So one wheelbarrow at a time to the back of the yard he went. By Sunday the gravel pile was almost gone. Sunday late afternoon we stopped gardening and went to a Play in Westport . The play was “Thurgood”, a one man show staring James Earl Jones. By the time we came home it was time for an early dinner. I made steamed vegetables and grilled shrimp. After dinner we decided to play our guitars to unwind a little. Chris was having a hard time reading the music. He tried his glasses and he sight wasn't getting any better. I then told him to check his numbers. Chris is insulin depended diabetic, and has been for over thirteen years. I can usually tell by just looking at him when his blood sugar is low. This time it was different. He didn't have any of his usual symptoms. He lied down for a few minuets because he was getting a headache on top of the blurry vision. When he got up he was in awful shape. He was confused, irritability and had slurred speech. He sounded drunk! I keep telling him to check his numbers and he wouldn't, he would just get mad. His behavior had really changed. I thought he might have had some kind of stroke from all the yard work. I called my neighbor, thinking if she came over he would snap out of it, or at least let me check his numbers. When she arrived it only got worse. He stood in the middle of the living room in his underwear yelling at the top of his lungs. That was it for me. I called 911 and then the driveway began filling up with emergency vehicles.
The paramedics try to get his numbers as well and they didn't have any luck, until one of the police officers told him that he was a retired Marine too. The police officer started to ask Chris about the Marines, and I guess that was all it took. Chris finally gave in and let everyone help him out. The paramedics gave him some Glucagon and in about 20 minutes he started to feel better.
In hindsight we're both a little embarrassed about the whole thing. I should have made him drink juice ASAP and then worried about his numbers. Chris is embarrassed that the entire rescue team of Weston saw him in his underwear not to mention our neighbor as well. I told him it's a good thing he looks great in them! The next day Chris delivered coffee and cookies to the police and fire department. He signed the card from the underwear Marine. So, from now on even if he breaks his arm he's getting juice first!
The third weekend we had to put our little Abigail to sleep. It was incredible hard. She was only six-and-half years old. So young.
By the fourth weekend it was my turn! I had been feeling bad for a few weeks. My muscles ached and I was having a hard time breathing. It was all coming back so fast. I increased my Prednisone from 7mgs to 20mg with no effect. I took every kind of pain pill I had and I still couldn't find any relief. I went in to see the doctor and he told me that they were working on getting me approved for another treatment of Rituxan, but that in the mean time I should take a treatment of Cytoxan. So, that Tuesday I had a treatment of Cytoxan. However, it really didn't do much good. I felt a little relief, but by Friday what relief I had felt was gone. I was coughing so much I was getting sick to my stomach and I could hardly walk. You know it's pretty bad when you can't get off the bathroom floor after hanging on to the John for ten minutes. All I could do was lie in bed and cry. Chris called the doctors office (the Oncology office where I was waiting to hear about insurance approval for the next treatment of Rituxin) and they said they would meet us at the emergency room. So off we went.
I spent six hour in the emergency room getting tested for everything. I had an x-ray of my lungs and every kind of blood test you can imagine. They were running out of veins. They were worried that I might have an infection in my lungs and with my history of PF any infection isn't a good thing. So, they hooked me up to 750 mgs of the antibiotic Zinacef and fluids. They also gave me 80mgs of Solumedrol (Prednisone) and morphine for the pain. All I wanted to do was sleep. My body was killing me, and every time I moved, I coughed, and every time I coughed, my body would hurt.
Then they moved me upstairs to the pulmonary wing. It must have been a busy weekend because the hospital was full, so I had to share a room with a woman who has Chronic Obstructive Pulmonary Disease (COPD) Emphysema. She was in bad shape and she didn't even know it. Her normal oxygen levels were only 88 and at times they would drop down to 83. Doctor after doctor told her she's going to be on oxygen for the rest of her life if she did not quit smoking, and the only thing she wanted to do was go outside for a cigarette. I felt like The Great Oz behind the curtain. All I wanted to do was pull the curtain back and ask her is smoking really more important to you than life? I didn't do it because I already new the answer. I just don't understand how people nowadays can smoke, but I guess that's what makes us all different.
All my doctors had the long weekend off, so I had to work with the doctors that were on call from their offices. It was hard explaining everything over and over. I was dealing with four different doctors. They wanted to know all the drugs I've been on and the dates that I was on them. That wasn't an easy task. I've been on a lot of drugs during the past nine years. I got through it; however, I'm putting together a single sheet of this information for any future visits. Only a true veteran of these diseases knows there will be more trips to the hospital. It's sad but true.
The next day I was starting to feel better but not great. The pulmonary doctor told me they had not found any infections in my lungs. However, just to be on the safe side, he recommended that I stay on antibiotics for a week or so. That was good news. Then the rheumatist told me I should increase the Prednisone to 60mgs for three days, then down to 40mgs for three days, then 20mgs for three days and then get a blood test to see where my SED-rate and CPK's are at. My SED-rate jumped up to 80 from 20 and my CPK's were 345 from 70. The doctor from my primary physician's office concurred with the other doctors on the case.
The doctor's office that admitted me into the hospital was an Oncology office. I've been getting my Cytoxan and Rituxan treatments at this office, so they were the one that Chris called when I got so sick. They have been working on getting me approved for another round of Rituxan, but they had only started the process two weeks before these events. Up until that time I was feeling okay. We didn't start working on the approval because we weren't sure how long the Rutxan would last in my system. I should have known better. I should have worked on getting approval back in January right after I finished my last treatment. Oh well, I always do things the hard way, it makes life more exciting.
Here are the benefits that I've learn from going to an oncology office in the first place. I've learn they can get chemo approved faster than any other doctors. When I explained to the oncologist that I was waiting for Rituxan and that Rituxan is the only drug at this time that will keep my dieses under control, he said okay let me see what I can do. About fifteen minutes later he came back into my room and told me he has approval for one treatment, and he would like to move me to the seventh floor to the Oncology department for the treatment. I couldn't believe it happened so fast. I guess when you're in the hospital you don't have to wait for the insurance to approve anything. So off to the seventh floor I went. It was like moving out of coach into first class. I had my very own room with more nurses that I knew what to do with, and most of all, the drug that I needed so desperately, Rituxan. After my treatment I convinced everyone I should go home. (After all I am in sales). As nice as the new room was at the hospital, it still wasn't as nice as it is at home. And I don't think there is a nurse on the planet that can do a better job of taking care of me better than my husband Chris.
Once I got home I went to bed. The next morning I felt so much better. It always amazes me how much better I feel after totaling poisoning my body with all theses chemical. I guess you just have to do, what you have to do.
Abigail, May 20th, 2006:
My little Abigail is no longer with us. Chris and I had to put her to sleep yesterday. Making the decision to put a dog to sleep has to be one of the hardest decisions for me to make in life. You see the pain in their eyes yet you feel you have to do everything you can to keep them going. But do they really deserve to suffer? And to what extent do you let the suffering go on? Do you wait until the dog feels worse and is in worse shape and then you feel better about putting them to sleep, or do you just do it once you find out how bad it is going to get?
With Abigail we treated her for about two weeks before we put her to rest. Abigail was diagnosed with Amyloidosis. Amyloidosis is a build-up of amyloid protein in the body that frequently leads to kidney failure. (53% of all Shar-Pei get it). I didn't want to wait until the kidneys failed completely. They say it's very painful. So on Saturday May 20 th, we took or last walk in the backyard. We live in front of a nature preserve with wonderful walking trails. Over this past month Abigail has lost almost half her body weight. I was surprised she was up for walk in the first place. As we headed out she lead the pack as she always does, glancing back every now and then just to make sure we're still coming. Then once we turned around and started to head home you could see she was starting to feel the pain. Her head hung low and she was walking a lot slower. Once we got home, I tried to feed her something and she refused. She was lying on the deck of my office in the sun and she was shivering. When my neighbor saw her she was shocked how bad she looked. Then I knew it was time. The dog is suffering and I'm too close to notice. I held her in my arms and cried. Then I went into the house to call the doctor and tell him we were on our way.
We loaded the car with her and her dog bed and off we went. The vet's office is only about two miles from our house. We walked in and a room was waiting for us. Chris carried her in and lied her down on her dog bed. We all got onto the floor with her. I couldn't stop petting her and telling her how much I love her. When the Vet came in he ran over the options and then told us we were doing the right thing, it was only a matter of time before her kidneys failed. I held her tiny head in my hands and watched her drift off in to a peaceful sleep. Then I went home and cried.
You see, Abigail was a rescue from Ohio. Only it turned out to be the other way around, she rescued me. Abigail came into my life when I was at my lowest point. I got her because I was afraid of what would happen to me if anything happen to my other dog Lewis. I was way too attached to him. I found Abigail on the internet from Wrinkle Rescue. Her name used to be Blue Berry Dumpling! I felt she needed a better name than dumpling if she was going to be living in CT. So I named her after John Adams wife. It was the book that I was reading at the time. Abigail loved men in khakis. Her favorite day was our wedding day. She greeted everyone and oh, the sea of men in khakis. She loved it. Abigail turned out to be a very sweet dog and she will live on in our memories. I will never forget her little runny nose and her sweet behavior.
"He is your friend, your partner, your defender, your dog. You are
his life, his love, his leader. He will be yours, faithful and true,
to the last beat of his heart. You owe it to him to be worthy of such
devotion".
All the images above of Abigail were taken when she was healthy.
April 2006:
I survived the tradeshow and my shingles ordeal. It took about three week for the shingles to go away. However, I still have a little scaring on my right hip. The doctor told me the scaring will go away in time. That's good, because you never know when Victoria Secret will call looking for a new underwear model. At least now, I know I will not be rejected because of the scaring on my hip!
I saw Dr. Noble at Yale this month. He wanted to check on the status of my Pulmonary Fibrosis. He ordered a CATSCAN and a breathing test. The CATSCAN showed no increase in the fibrosis in my lungs which has been stable for the last year. All this is starting to pay off.
This was my last appointment with Dr. Noble. He has accepted the job to head up the pulmonary department at Duke University. What a great opportunity for him. Dr. Noble went above and beyond the call of duty for me on more that one occasion. The letters he wrote to my insurance companies were instrumental to getting approval of the drugs I was taking. He is a doctor who really cares. Dr. Noble, I want you to know I appreciate all your help and support. I will truly miss you. However, it's comforting knowing where you are if I need you. Best of luck!
Yes, my lungs are under control. Now I just need to get the Polymyositis and the Anemia under control. My CPK's are 72 (normal) and my SED rate is 30 (just a little high). I've been going in every two weeks for a shot of Aranesp. Aranesp is the treatment that helps boost the red blood cell count, and in doing so, it gives you more energy. My hemoglobin is at 9.9 and the normal range is 12.2-16.2. My anemia is associated with all the chemotherapy drugs I've taken over the years. The shot itself stings, and really hurts if they administer the medicine too fast. So if you have to take the shot, tell the nurses to go slowly. It will make a big difference. The drug really works. I feel like I have more energy a few days later.
It always amazes me how much we can learn from animals. My dog Leo recently had an eye lift. This is a very common procedure for Shar-Peis. Basically there is too much skin around the eye lid causing it to roll. The roll scratches the eye itself and it can be very irritating. So the doggie ophthalmologist gave Leo a little eye lift. After the surgery the doctor informed me that Leo needed to wear a cone around his neck for ten days. Well you have to know Leo to really appreciate this story. Leo is a very curious dog. He's always running around the yard looking for something to chase or get into. So when the doctor told me he needed to wear this cone for ten days I was really worried. There was no way I would be able to keep Leo confined to the house and only let out on a leash! I didn't have much of a choice as we just spent a small fortune on his eyes and I didn't want anything to happen to them. So, I went home and gave it a try. The first couple of days were not that bad. He was relatively clam. By the third day he had so much energy built up that nothing was going to hold him back. He was ready to go and play. He would run into things but it didn't bother him at all. He would just back up and try it again. He still chased things in the yard and ran around like the cone wasn't even there. He even tried to fit through the dog door a couple of times. By the seventh night my husband and I were in the kitchen and he was fast asleep and we both felt so sorry for him. The poor little guy had no idea when this cone was coming off and you know it had to be very uncomfortable having a big plastic thing around your neck 24/7. Then we both realized Leo doesn't care..he had moved on. He was still enjoying the backyard and still running around having fun, and he wasn't going to let that cone change his way of life. He didn't whine or sit home feeling sorry for himself. He just went out like every other day and played even though he had a few more challenges. So, Leo has taught us that regardless of what goes on in our life, just keep on enjoying everything, even if you run into things every now and then and at the end of the day if you can't find a pillow just make due! You can always use your bowl.
March 2006:
We'll I did it! I finished my last treatment of Cytoxan this month. I had six IV treatments over the past six months. I thought I was going to escape without any side effects. My hair didn't fall out and the treatment didn't make me sick in any way. It was actually fairly easy. Then about a week after my last treatment I started to feel waves of pain. I just thought it was from the Polymyositis. Then one morning I woke up with a rash on my right hip. As I was showing it to Chris and asking him if he thought it was poison ivy, it dawned on me what it actually was. OH MY GOD, I have shingles! That explains the waves of pain. Great…just what I needed. I was getting ready for the largest tradeshow of the year. This is a very stressful time. The tradeshow sets the tone of what my year will be like (I'm in sales). This tradeshow is held in New York City for three days. I'm usually very busy with appointment, meeting and entertaining, so that means eating out and staying up late. Tradeshows are tough on healthy people so you can only imagine how hard it is for someone that has any kind of illness.
Two years ago I ended up in the hospital with pneumonia right after the show, so I'm always a little apprehensive going into it. On top of having shingles I started my period. So I had to deal with waves of pain and cramps all at the same time. If that wasn't enough of a challenge, Chris, my husband came down with bronchitis. I just crossed my fingers I didn't get that.
Off to the show I went. I drank lots of water and ate vitamin C all day long. I made it through the three days of the show, various meetings and entertaining every night. I did all this with a smile on my face. However, I should tell you I pack lots of pain pills and midol. I just kept saying to myself just take one day at a time, and before I know it, it will all be behind me…and it was. I came home Sunday evening to a dozen Red roses and a lots of pampering only Chris can do.
At the show only a couple of my close friends knew about the shingles. They were telling me how brave and strong I was, and I thought about it. You know when you have been dealing with an autoimmune disease for nine years it teaches you to be strong and brave because you have no choice. I told them that you never know how you're going to handle something until it happens. My mother used to tell me all the time, it can always be worse. So for me, I was just happy I was at the show and happy I'm still able to do what I love despite the little challenges I have along the way.
If you don't know what shingles are here's a little info on them. Also forgive me for the gross photo, but I always say a photo is worth a thousand words. Shingles are an outbreak of rash or blisters on the skin that is caused by the same virus that causes chickenpox. Anyone who has had chickenpox is at risk for shingles. Usually the cause of shingles is a decrease in your body's natural resistance, stress, being generally run down, or when the body's immune defenses are affected by certain drugs, steroids, chemotherapy (Cytoxan) to name a few. You can't really get shingles from others. However, if you have shingles you can give others Chickenpox if they've never had them.
February 2006:
Last month I was going nuts with steroid overload. It was like I drank ten cups of coffee. Every part of my body was racing. I feel so much better now that I've decreased the steroids. The good news is when you're in this state you get a lot done. The bad news is you don't know when to stop. The higher dose of steroids really affected my sleep. The only way I could fall asleep was a sleeping pill. My doctor prescribed the new Ambien CR, and wow! What a great pill. It puts you right to sleep and you sleep all through the night. Sleep is very important to me. I'm one of those people that needs at least eight hours.
Encouraging news… Rituxan is working! My CPK's are 79 and my SED rate is at 47 (normal is 15 or less). I'm feeling great. I have more energy than I've had in years. It has been two months since my last Rituxan treatment. I had four treatments in December. Rituxan is a drug with few side effects. However, one of them is an allergic reaction. A few weeks after my last treatment by body started to itch. I thought it was from the high dose of steroids, but later found out it was from the Rituxan. I tried Benadryl and it worked for a few weeks then I needed something stronger, so my doctor prescribed Atarax. I take four pills a day and so far it's working. However, the drug is really drying out my skin. I've tried drinking more water and that really hasn't helped much. So, I'm just dealing with it. I figure having dry skin is a small price to pay to feel great.
I've just finished my fifth treatment of Cytoxan. I have one more to go. Five months ago when I started this I was really scared. I was envisioning the worst. I thought I would feel awful with side effects of nausea, hair loss, and no energy. I was prepared for the worst. I was prepared to take my body to the depths of hell. Well, if this is hell, it's not so bad! I didn't suffer from any of the side effects. As a matter of fact, my hair is growing like a weed. I have to get it cut every six weeks instead of the normal eight weeks. These past few months I kept thinking, any day now it's all going to fall apart and surprisingly it didn't. I'm taking such heavy duty drugs, and it hasn't slowed me down at all. I'm still working, still traveling, and still standing. It is really amazing what the body can go through. It has also taught me a very valuable lesson. Don't be afraid to try the unknown, you may be pleasantly surprised.
The International Scleroderma Network published my story along with many others in third addition of Voices of Scleroderma. The book is primarily about Scleroderma. However, it also talks about other immune diseases and overlapping diseases such as Pulmonary Fibrosis and Polymyositis. About four years ago I came across the Web site www.Sclero.org The Nonprofit International Scleroderma Network. They have information regarding Polymyositis and Pulmonary Fibrosis and I found it very helpful. They also have stories from people from around the world. The stories were written by people suffering from Scleroderma and other autoimmune diseases. So, I posted my story, and in doing so it got published. I think one of the greatest gifts you can give to someone is information, especially when you're suffering from a rare disease. I've found that there is a comforting feeling knowing you're not alone. If you're interesed in posting your story you should checkout the Web site www.Sclero.org. I found it very inspiring. There are a lot of strong people out there dealing with a lot of tough stuff!
January 2006:
I'm starting the year out right. My CPK's are normal and my SED rate is down to 51 (normal is 15). I've been feeling great! I finished my weekly treatments of Rituxan and I only have two more treatments of Cytoxan to go. So far, I've only suffered from two side effects and I think both of them were due to the increase of streoids. With the Rituxan treatment I was taking 10mgs of IV Decadron weekly along with my 15mgs of Prednisone daily. By the end of the third week I was ready to craw out of my skin. I was going nuts. I was suffering from obsessive-compulsive disorder. I cleaned and organized every cabinet, drawer, and closet I could find. I even started in on my neighbor's house. Chris and I were asked over for dinner and I volunteered to set the table. When I opened the silverware drawer I noticed some of the silverware was mixed together, so I started to fix it. When the room got quiet I turned around and everyone was staring at me. What! Chris took me by the arm and sat me down. We all started to laugh. It's really a good thing everyone knows me and knows how crazy I can get when I'm on a high-dose of steroids. The next day I called my doctor and he reduced Decadron down to 5mgs. He also had me decrease the Prednisone to 10mgs. It took a week or so before I started to feel more like myself.
The other side effect I had was an allergic reaction, my whole body itched and my face turned red with a rash. I tried all kinds of natural stuff and none of it worked. Then I resorted to 50mgs of Benadryl at night, three days later it was gone. I'm not sure if this reaction was due to the Rituxan or the steroids. I'm just glad it's gone.
This month I celebrated my 43rd birthday. Chris met me in L.A. and we spent time in Santa Monica with some friends of mine that I haven't seen in seventeen years. It's amazing how fast time goes by when you get older. We had a great time reminiscing about old times and catching up. We also drove down to San Diego to see Chris's youngest son, Jason and his wife Karry and their two kids, Aidan and Ainsley. Aidan, who is a little over two years old, is full of curiosity and energy and is very independent. Ainsley is six months old and she's all girl. She is just adorable with that beautiful smile and great dimples. It was a short visit but it's always nice to reconnect with family.
I've discovered a new passion. Yes, even with a autoimmune disease I can do this. I'm learning how to play the guitar! Learning to play has always been on my long list of things to do. I've always admired people that can play an instrument, especially the guitar. So for Christmas, Chris gave me a guitar and lessons. This is the perfect instruments for someone with an autoimmune disease. All you need to do is sit down and strum strings. It doesn't take a lot of energy. It's just a little sore on your fingers at first, but then you get used to it and it's not so bad. I can't tell you how exciting it was when I could play my first song "For What It's Worth" by Buffalo Springfield. I played along with my instructor Bob and we jammed! It was a blast.
Disclaimer: I am not a medical
professional nor do I have any medical training.
The information contained within this web site is based on my personal
experience and my research only.
I do not recommend nor do I endorse any of the treatments, medicines
or products listed within the contents of this web site.
Despite the Holidays December was a quiet month for us. I had to go in early for my Rutixan appointment. The appointment was scheduled for early January. However, the company I work for changed insurance companies once again. This is the fifth time in eight years. I don't think they understand how difficult it is for someone that has a chronic illness. I've learned over the years it's all about money not what's convenient or what's best for the employees. So, as of January 1st I'll be back with United Health Care. It always takes several letters before I get approved for Rutixan so I thought it would be best if I took the treatment early and that way I would have a few month to work on the approval process.
I'm still feeling very strong and I'm enjoying the gym and yoga. Last week I found myself in a more advance yoga class and it was quite the experience. With the holidays all the class schedules are all mixed up. I knew I was in trouble when I was stretching on my mat before class and as the room was starting to fill up I was noticing a lot of familiar faces from the more advance class (typically the more advance class lets out before my class starts so you see the same faces all the time).
We had a wonderful holiday. We had our traditional Christmas Eve dinner with neighbors and friends. Christmas morning we spend opening gifts and watching the dogs eat all the wonderful treats from Santa Paws and then Harrison and Emerson came over for Christmas part two at Pop Pop's and Mom Mom's. The highlight was Jason's call from Iraq . He told us he just received his package from us and he was going to share all the candy and cookies with his squadron. He also sent us a Freedom Flag that he flew over Iraq . It was a wonderful holiday. However, I always look forward to a New Year.
November has slowed down a little for me. I didn't travel to any exotic places, just a day trip here and there. I think I just needed to slow down and just enjoy being home with my two dogs and my husband. My energy however is still going strong, that hasn't slowed down at all. It's amazing how much better I feel now that my iron levels are normal. I feel so strong now.
I've increased my yoga practice. I go to the “Shala” four to five times a week. I love every minute of it. I also work out with a personal trainer two days a week for thirty minutes. Her name is Samantha and she works at the YMCA. Sam's mother-in-law has Polymyositis. How weird is that? Sam has such an understanding of the disease. She understands what I can and can't do and that is always half the battle with a trainer. Sam has really helped me regain my strength. Chris and I took the dogs for a six mile hike at the “Gunks” in New Paltz, NY over the Thanksgiving weekend, they both burnt out before I did! So thanks Sam for all you help and support.
I came home and talked to Chris about the new discovery and we both agreed I could use a pass on this one. We waited four or five days and the test results came back…negative for cancer. Well someone was hearing us; we got that pass we were hoping for. 
Five of us flew to Nancy 's vacation home in Careyes, Mexico. This is a place that most of us just dream about. The villa sits on the side of a cliff with the Pacific Ocean beating at the rock below. It was something right out of the pages of Architect Digest. The view was a picture postcard in every direction.
The staff at her home waited on us from the moment we arrived. It was like staying at a Five Star Resort, only better since we were the only people there. We had spa-like meals and they made me virgin margaritas. Every night we toasted the sunset with a margarita and watched it sink into the Pacific as we munched on fresh guacamole and homemade chips.
We took tons of photos. There is nothing like getting girls together with a digital cameras. I have to say Kim, Sis, Camilla and Nancy dressed up for every event. They looked beautiful all the time. I'm a little more laid back with a tomboy look, but I gave it my best shot.
The best part of the weekend was everyone was reflecting on life. How important our husbands and children are to us. How blessed we are to spend six day together in such a special place without a worry or care. It was truly a special weekend. It's not often that women can get away without husbands or kids and just spend time together and enjoy each other's company. When it was all over and time to go home, we were sad to be leaving but happy to be heading home, well rested and partied out. We were ready to return to our regular lives with a fresh outlook on life and family. 
Skydiving was something on our list of things to do and I'm so happy we did it. It was my birthday present to Chris. The place we jumped at is called The Ranch. It's in upstate New York , and it's been around for years. It's close to New Paltz. When I was younger I use to rock climb in New Paltz at a place called the Gunks, so just driving around up there brought back some great memories.
There is a seven page waiver that you have to sign, which I think a lot of people back out after reading it. Every other paragraph is “you could die, it's on you” and so on and so forth. When it comes to things like that, my thought is I'm going to do what makes me happy and what I want to do, because we're all going to die someday! So I enjoy life and live it to the fullest and I try not to let the fine print freak me out.
Chris jumped first, after all it was his birthday. If you see the video you'll see him just fall out of the plane. It was very strange watching him jump. I thought, Lenor, what a dummy! You married the man of your dreams and then you buy him a ticket to jump out of a plane at 13,500 feet. What were you thinking! When it was my turn, I got up to the door and the wind was on my face and I couldn't stop smiling. It was such a great feeling. I was waiting for this big rush of fear, but it never happened. Once I jumped I thought I would be freaked out for a minute, but I thought don't worry the chute will open and you'll be fine. As I was free falling I was waiting for the fear and it never came over me. It was very strange. Once I realized it wasn't coming it was like total freedom and so in the moment. It was such a rush and so awesome. Never in my life have I had such a thrill. It was such a memorable time. When the chute opened up and my instructor asked me how I was doing I told him I was having the time of my life. When we landed I was so excited to hear that Chris enjoyed it as much as I did. We're doing this again!
Wow! You can do so many things when you have the energy! For the past few years I've been suffering from anemia, and for the first time it's under control. My red blood cells are normal and what a difference it makes. I had always thought my lack of energy and fatigue was due to the Polymyositis, but I was wrong. I think most of my fatigue was caused by the anemia. So after five treatments of Venofer my energy level came back, and wow, what a difference it makes.
With all this newfound energy I've been putting it to good use. I've been walking forty five minutes a day with the dogs, and on the weekends we've been taking them to parks and walking for a few hours or so. I've been going to the gym twice a week, swimming and participating in Yoga class once a week. I still have to take each activity slowly, but I'm so excited I have the energy to enjoy them. I'm even staying up past nine thirty. My husband is telling me, it's getting hard to keep up with me.
This month was Jason's first month in Iraq. Chris and I tied a yellow ribbon around an oak tree. The ribbon is there until he's home safe and sound. Everyone in the family has one on their door or around a tree in their yard. We also tied one around the dogs, but they were adamant the ribbon was coming off right after the photo!
I didn't want my little episode to spoil the special weekend we were having. The Fourth of July was the first time all four grandchildren were together at one time so it was very exciting. They're all under three! Chris' son 
After everyone returned home, our life got back to normal. The doctor's office called with a new drug that he would like me to try, Venofer. This is an IV iron sucrose that is easier to handle. The only downside is, instead of one infusion that could last six months to a year, I'll have to take five infusions for the same results. So, back to St. Vincent 's I went. They were totally prepared for me this time. I had all kinds of extra bags just in case I needed them. I didn't, everything went very smoothly. After the first two treatments I was still so tired I could hardly get out of bed. Then it kicked in, my energy is slowly coming back.
By the second weekend of June I had finished my third treatment of Rituxan. My hospital visit last month was becoming a distant memory, and I was starting to feel more like my old self again.
Carisolo is a small village that sits at the base of the Dolomite Mountains in the Italian Alps. The place is unbelievable. All the homes had beautiful flower window boxes in every window. The view was spectacular in every direction. I couldn't have dreamed of a better place to recover. But, what really made the trip special were the people. Lui and Emily's family and friends really made Chris and I feel right at home.
One evening we had dinner with Lui's cousins at a mountain top hideaway. The setting was something right out of a magazine. The summer cabin sat high on the hill side surrounded by wild flowers, and pine trees overlooking the valley with breathtaking views of snow caped mountains. The table was filled with cheeses, meats, and of course red wine. Diego was making fresh polenta over an open flame so the smell of wood was is the air. Sitting there over looking this spectacular view I realized how truly lucky I really am. Just three weeks earlier I was in the hospital, and here I was sitting on top of this mountain enjoying an amazing evening. Chris and I toasted to living each day to the fullest.
Where do I even start! I guess if I use the weekends as a timeline it will be easer to follow. The first weekend of May I was feeling great. I traveled to Italy for my annual tradeshow in Milan . The weather was great and the food was even better. My trip was an overall success and to top it off, I found some fun sunglasses to make it even better.
The paramedics try to get his numbers as well and they didn't have any luck, until one of the police officers told him that he was a retired Marine too. The police officer started to ask Chris about the Marines, and I guess that was all it took. Chris finally gave in and let everyone help him out. The paramedics gave him some Glucagon and in about 20 minutes he started to feel better.
I spent six hour in the emergency room getting tested for everything. I had an x-ray of my lungs and every kind of blood test you can imagine. They were running out of veins. They were worried that I might have an infection in my lungs and with my history of PF any infection isn't a good thing. So, they hooked me up to 750 mgs of the antibiotic Zinacef and fluids. They also gave me 80mgs of Solumedrol (Prednisone) and morphine for the pain. All I wanted to do was sleep. My body was killing me, and every time I moved, I coughed, and every time I coughed, my body would hurt.
Here are the benefits that I've learn from going to an oncology office in the first place. I've learn they can get chemo approved faster than any other doctors. When I explained to the oncologist that I was waiting for Rituxan and that Rituxan is the only drug at this time that will keep my dieses under control, he said okay let me see what I can do. About fifteen minutes later he came back into my room and told me he has approval for one treatment, and he would like to move me to the seventh floor to the Oncology department for the treatment. I couldn't believe it happened so fast. I guess when you're in the hospital you don't have to wait for the insurance to approve anything. So off to the seventh floor I went. It was like moving out of coach into first class. I had my very own room with more nurses that I knew what to do with, and most of all, the drug that I needed so desperately, Rituxan. After my treatment I convinced everyone I should go home. (After all I am in sales). As nice as the new room was at the hospital, it still wasn't as nice as it is at home. And I don't think there is a nurse on the planet that can do a better job of taking care of me better than my husband Chris.
My little Abigail is no longer with us. Chris and I had to put her to sleep yesterday. Making the decision to put a dog to sleep has to be one of the hardest decisions for me to make in life. You see the pain in their eyes yet you feel you have to do everything you can to keep them going. But do they really deserve to suffer? And to what extent do you let the suffering go on? Do you wait until the dog feels worse and is in worse shape and then you feel better about putting them to sleep, or do you just do it once you find out how bad it is going to get? 
With Abigail we treated her for about two weeks before we put her to rest. Abigail was diagnosed with Amyloidosis. Amyloidosis is a build-up of amyloid protein in the body that frequently leads to kidney failure. (53% of all Shar-Pei get it). I didn't want to wait until the kidneys failed completely. They say it's very painful. So on Saturday May 20 th, we took or last walk in the backyard. We live in front of a nature preserve with wonderful walking trails. Over this past month Abigail has lost almost half her body weight. I was surprised she was up for walk in the first place. As we headed out she lead the pack as she always does, glancing back every now and then just to make sure we're still coming. Then once we turned around and started to head home you could see she was starting to feel the pain. Her head hung low and she was walking a lot slower. Once we got home, I tried to feed her something and she refused. She was lying on the deck of my office in the sun and she was shivering. When my neighbor saw her she was shocked how bad she looked. Then I knew it was time. The dog is suffering and I'm too close to notice. I held her in my arms and cried. Then I went into the house to call the doctor and tell him we were on our way.
We loaded the car with her and her dog bed and off we went. The vet's office is only about two miles from our house. We walked in and a room was waiting for us. Chris carried her in and lied her down on her dog bed. We all got onto the floor with her. I couldn't stop petting her and telling her how much I love her. When the Vet came in he ran over the options and then told us we were doing the right thing, it was only a matter of time before her kidneys failed. I held her tiny head in my hands and watched her drift off in to a peaceful sleep. Then I went home and cried. 
I saw Dr. Noble at Yale this month. He wanted to check on the status of my Pulmonary Fibrosis. He ordered a CATSCAN and a breathing test. The CATSCAN showed no increase in the fibrosis in my lungs which has been stable for the last year. All this is starting to pay off.
Yes, my lungs are under control. Now I just need to get the Polymyositis and the Anemia under control. My CPK's are 72 (normal) and my SED rate is 30 (just a little high). I've been going in every two weeks for a shot of Aranesp. Aranesp is the treatment that helps boost the red blood cell count, and in doing so, it gives you more energy. My hemoglobin is at 9.9 and the normal range is 12.2-16.2. My anemia is associated with all the chemotherapy drugs I've taken over the years. The shot itself stings, and really hurts if they administer the medicine too fast. So if you have to take the shot, tell the nurses to go slowly. It will make a big difference. The drug really works. I feel like I have more energy a few days later.
It always amazes me how much we can learn from animals. My dog Leo recently had an eye lift. This is a very common procedure for Shar-Peis. Basically there is too much skin around the eye lid causing it to roll. The roll scratches the eye itself and it can be very irritating. So the doggie ophthalmologist gave Leo a little eye lift. After the surgery the doctor informed me that Leo needed to wear a cone around his neck for ten days. Well you have to know Leo to really appreciate this story. Leo is a very curious dog. He's always running around the yard looking for something to chase or get into. So when the doctor told me he needed to wear this cone for ten days I was really worried. There was no way I would be able to keep Leo confined to the house and only let out on a leash! I didn't have much of a choice as we just spent a small fortune on his eyes and I didn't want anything to happen to them. So, I went home and gave it a try. The first couple of days were not that bad. He was relatively clam. 
By the third day he had so much energy built up that nothing was going to hold him back. He was ready to go and play. He would run into things but it didn't bother him at all. He would just back up and try it again. He still chased things in the yard and ran around like the cone wasn't even there. He even tried to fit through the dog door a couple of times. By the seventh night my husband and I were in the kitchen and he was fast asleep and we both felt so sorry for him. The poor little guy had no idea when this cone was coming off and you know it had to be very uncomfortable having a big plastic thing around your neck 24/7. Then we both realized Leo doesn't care..he had moved on. He was still enjoying the backyard and still running around having fun, and he wasn't going to let that cone change his way of life. He didn't whine or sit home feeling sorry for himself. He just went out like every other day and played even though he had a few more challenges. So, Leo has taught us that regardless of what goes on in our life, just keep on enjoying everything, even if you run into things every now and then and at the end of the day if you can't find a pillow just make due! You can always use your bowl. 
If you don't know what shingles are here's a little info on them. Also forgive me for the gross photo, but I always say a photo is worth a thousand words. Shingles are an outbreak of rash or blisters on the skin that is caused by the same virus that causes chickenpox. Anyone who has had chickenpox is at risk for shingles. Usually the cause of shingles is a decrease in your body's natural resistance, stress, being generally run down, or when the body's immune defenses are affected by certain drugs, steroids, chemotherapy (Cytoxan) to name a few. You can't really get shingles from others. However, if you have shingles you can give others Chickenpox if they've never had them. 
The International Scleroderma Network published my story along with many others in third addition of Voices of Scleroderma. The book is primarily about Scleroderma. However, it also talks about other immune diseases and overlapping diseases such as Pulmonary Fibrosis and Polymyositis. About four years ago I came across the Web site 
I'm starting the year out right. My CPK's are normal and my SED rate is down to 51 (normal is 15). I've been feeling great! I finished my weekly treatments of Rituxan and I only have two more treatments of Cytoxan to go. So far, I've only suffered from two side effects and I think both of them were due to the increase of streoids. With the Rituxan treatment I was taking 10mgs of IV Decadron weekly along with my 15mgs of Prednisone daily. By the end of the third week I was ready to craw out of my skin. I was going nuts. I was suffering from obsessive-compulsive disorder. I cleaned and organized every cabinet, drawer, and closet I could find. I even started in on my neighbor's house. Chris and I were asked over for dinner and I volunteered to set the table. When I opened the silverware drawer I noticed some of the silverware was mixed together, so I started to fix it. When the room got quiet I turned around and everyone was staring at me. What! Chris took me by the arm and sat me down. We all started to laugh. It's really a good thing everyone knows me and knows how crazy I can get when I'm on a high-dose of steroids. The next day I called my doctor and he reduced Decadron down to 5mgs. He also had me decrease the Prednisone to 10mgs. It took a week or so before I started to feel more like myself. 
This month I celebrated my 43rd birthday. Chris met me in L.A. and we spent time in Santa Monica with some friends of mine that I haven't seen in seventeen years. It's amazing how fast time goes by when you get older. We had a great time reminiscing about old times and catching up. We also drove down to San Diego to see Chris's youngest son, Jason and his wife Karry and their two kids, Aidan and Ainsley. Aidan, who is a little over two years old, is full of curiosity and energy and is very independent. Ainsley is six months old and she's all girl. She is just adorable with that beautiful smile and great dimples. It was a short visit but it's always nice to reconnect with family. 
I've discovered a new passion. Yes, even with a autoimmune disease I can do this. I'm learning how to play the guitar! Learning to play has always been on my long list of things to do. I've always admired people that can play an instrument, especially the guitar. So for Christmas, Chris gave me a guitar and lessons. This is the perfect instruments for someone with an autoimmune disease. All you need to do is sit down and strum strings. It doesn't take a lot of energy. It's just a little sore on your fingers at first, but then you get used to it and it's not so bad. I can't tell you how exciting it was when I could play my first song "For What It's Worth" by Buffalo Springfield. I played along with my instructor Bob and we jammed! It was a blast.