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.
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