My Story

Polymyositis

Pulmonary Fibrosis

My Health Update

My Drugs & Herbs

My Diet & Nutrition

My Healthy Home

May: 2010

It's been three week s since my last Rituxan treatment and it's started to kick-in. I'm feeling like my old self again. I know I've said this hundreds of time but I'm saying it again, Rituxan is really a miracle drug for me. It's still hard for me to believe Rituxan is the only drug I've been taking for the last two years. No Prednisone, no Protonix, no sleeping pills, nothing, well maybe an aspirin every now and then but other than that, that's it. I can remember I used to take a handful of pills in the am and another handful in the evening. It's such a feeling of freedom.

My little brothers flew out from California to help us put up a deer fence this month. We didn't really have a deer problem, we had a coyote problem. Last year it started to get bad, a few coyote would hang around the yard and drive the dogs' nuts until one day late in December Leo ran through the invisible fence to go after them. Leo is a 67 lb. dog but his size didn't se e m to discourage the coyotes at all. Chris ran after them with an air-horn and every time he blew the horn the coyotes would run deeper into the wood s with Leo chasing after them. After 30 minutes or so Leo got tired and came home with Chris right behind him. The coyotes bit Leo a few time s in the rear legs and they also de-gloved the tip of his tail. I took him to the vet and he got a couple of stitches. The vet told me we're luck y Leo got away as coyotes have been known to kill dogs around here. We think the coyotes were hanging around the house because they could smell the new little puppy “George” . H e would have been an easy dinner, just the thought makes my stomach turn. After the coyote incident the dogs stayed on a lease 24/7 and I would not go outside without the air horn. There is no way I would let a coyote or any other wild animal drag one of my dogs out of the yard.

With the cold weather and everything going on the best time for my brothers to fly out here was May. My bothers are both very big men 6'7 and 6'5. They have a construction company and they're use to putting in vineyards back home so putting up a fence wasn't that hard for them. What would of taken Chris and I weeks to do only took them a day. They had a seven foot fence around two acres in a mater of hours. Putting up the fence was a lot easer than everyone thought it was going to be. Now the dogs are safe and sound and no one is going to get hurt. It's such a relief. I can't tell you how stressful the last few months have been.

April: 2010

Dr. Berard moved his office to St Vincent Medical Center in Bridgeport where they have a new cancer wing, the Elizabeth Pfriem SWIM Center for Cancer Care. Dr. Berard practices hematology, oncology and internal medicine. He is who I see for my Rituxan treatment. This new building is amazing. It's so beautiful you feel like you're at a five star hotel when you walk through the lobby. I'll tell you, there is a lot of money in cancer...that's for sure.

The Rituxan treatment went very smoothly and was uneventful. I guess that's what you want when you go in. It took about three hours in total. It's always sad for me in the treatment room to see all the other people that are in getting treatments for cancer. Young, old, men, women...cancer does not discriminate.

After my treatment the nurse always schedules the next one. This time I felt fourteen weeks might work out better than sixteen weeks as I was feeling a little tired and felt maybe I shouldn't wait that long. You never know what's going to work so you have to modify and make it up as you go. I've learned over the years to always listen to my body.

Once I take the Rituxan it takes a few weeks for me to feel great again. Then that feeling lasts for a few months or so. Rituxan has been the only drug that has really worked for me over a long period of time. Rituxan has been my miracle drug.

A week or so after my treatment I checked into Niam in Brewster , NY for a long weekend of Panchakarma detox. Last September was my first Panchakarma and it was so wonderful I decided to go back. This time I wanted to see how I felt after four days. The first time I went for seven days. I have to say they're both wonderful, however, I prefer seven days. After the week long treatment I felt amazing for several months.

Over the years I've learned to really try to take care of myself the best I can. Going to Niam is really a treat for me and I really benefit from it.

Panchakarma is a Ayurveda detox that should be done at the change of season. Niam is a great place to go. Dr. Gerson is a wonderful man who has a M.D., Ph.D. (Ayurveda) and is one of the few healers to hold both a degree in conventional and Ayurveda medicine. He is helping me find ways to improve my health.

Ayurveda is a complete healing system that was developed more than 5,000 years ago in India . The goal is to achieve balance in both the body and mind. The “Science of Life,” as it's called, draws its inspiration from nature. Ayurveda believes that the five elements in the universe; fire, water, earth, air and space, are present in our physiology, and that it's the imbalance of these elements that leads to illness.

I spent three days taking steam baths and getting Abhyange (Full Body Ayurvedic Massages). This is a special oil massage that is given by two therapists who synchronize their strokes and massage according to the circulatory channels and marma points. The oils are chosen according to one's body type (I'm a Pitta/Vata). Then after the massage I had a Shirodhara (Third-eye Drip). “Shiro” means head and “dhara” is the continuous follow of a liquid. Shirodhara is warm herbal oils that flow over your forehead in a steady stream for 30 minutes or so. It's really wonderful for your hair too! It's just not that easy getting all the oil out of long hair.

The four days were wonderful; no TV, cell phones, computers or radios. It's a time to relax and let go, something everyone could benefit from. I'm going back in the fall for a week.

March: 2010

March has always been a busy month for me. This year I had two tradeshows to attend. The first was in Italy. That show was typically held in May however, the last few years they have moved it to the beginning of March. Personally I would rather go to Italy in May when the weather is so much nicer. This year it was cold just like New York and I couldn't escape the snow, it was starting to snow the day we left.

I slept most of the long “red eye” flight and took a short nap at my hotel in Milan. Late in the afternoon my colleague Gloria and I went to see the Duomo. We've seen the church many times before however, over the last few years they've been cleaning it and scaffolding has been blocking the views. We heard all the scaffolding had been removed and the church was clean, so we wanted to see what it looked like. After stepping out of the cab you couldn't miss it, Wow!  The Duomo of Milan is the fourth largest church in the world and it took five centuries to complete. It is really spectacular and it's clean.

When I returned home I knew I needed to get lots of rest because tradeshow number two was less than two weeks away. Typically tradeshows take a lot out of me. I've been feeling so good these past months and I didn't want to have a flare-up. The show was in New York so the good news was I didn't have to travel far. The show was for three days however, I stayed in the city for four nights. I like to go in a little early and meet with clients. I took one of my clients to the Red Door Spa. We do this every year and it's wonderfully relaxing at the spa. Going to the spa is always better than a night at the bar. I made it through the show and felt pretty good. A week after the show I started to feel very tired and worn out. I wasn't sure if it was because of all the traveling and work I had been doing or if the Rituxan was wearing off. Now-a-days I'm never sure if I'm tired because of Polymyositis or because I'm just getting older. 

I was going in every three months for my treatment of Rituxan and this time I pushed it out to sixteen weeks. I'm not sure sixteen weeks is the magic number for me or not. I going in on April 6th I'll talk to the doctor about it.  

February: 2010

Snow, snow and more snow... we have had it. It's beautiful the first three or four storms, however, it's getting old this year. The East Coast has been hit hard. We couldn't take it any more so off to St Thomas we went. Chris' brother and his family live down there so we try to visit them every February. We we're so excited this time to get to a warm place. When the heat hits you as you first step off the plane in St Thomas is such an “aaahh” moment. We love that feeling… “aaahh” to be warm again!

This trip was very nice. We spent time on St John and we took the dinghy over to Jost Van Dyke in the British Virgin Islands. The beach is beautiful there. I know what you're thinking; what was she doing on a boat again! No drama this time. In 2007 I broke my back and crushed my spinal cord in a boating accident when we were heading to the BVI. Lot 's of pain, however, I recovered and I did not suffer any long term damage from it. It seems like a lifetime ago. I'm an Aquarius so you can't keep me off the water. I love boating and being on the water and the water down there is so beautiful and warm!

The weather was great; 75-80 degrees every day. It rained a little and that was nice too. We keep saying as long as it's not snowing we're okay with it. I laid in the sun the first few days and that was it for me. My skin just can't take the sun anymore. Day three I broke out in a sun rash. It's always something with me! I've had sun rash before, however, this time I had it all over my body and it itched a lot if I didn't have cream on it. Over the years I've found I'm a lot more sensitive than I used to be. I think it's because of all the drugs I've taken. I have to be very careful with any new drug I take as my list of things I'm allergic to is growing by the day. Now I can add sun to that list.

Work has been very busy; I'm off to Italy next month...

January: 2010

I'm feeling great! My Rituxan treatment was last month. I had the treatment a little early this time to avoid problems with the insurance company. If you have been reading my updates you know I've had more than a couple problems over the years when my company changed policies or just with the insurance company. Rituxan isn't a standard treatment for PM or PF so I have to go through a lot of hoops to get it approved. I wanted to get my treatment in December so if I needed time to get re-approved my health wouldn't fall apart in the meantime. My next treatment will be in 16 weeks; sometime in April.

I had a business trip in Northern California this month so I thought it would be nice to stay over the weekend and visit my family and do a little work on a piece of property I have there. My grandfather left me an old apple orchard there years ago. It's been in the family since 1958 and is very organic as it hasn't been touched in thirty years. The trees still produce apples every year, however, since they haven't been properly pruned, the poor branches get so heavy the limbs break. Over the years a lot of the trees have just fallen over. The trees look more like willow trees than apple trees. They really need to be pulled up but I don't have the heart to do it. The deer enjoy the apples the most.

My two brothers volunteered to help me with the pruning. I knew this was a huge undertaking but since I've been feeling so good over the last few years I thought I would start cleaning the orchard up. However, before I even started I told myself if I only prune one tree that would be better than none. Baby steps right?

Once we got back into the orchard it was overwhelming. I keep walking around saying “one tree Lenor, that's all you need to do”. So I found a tree that looked like it was the healthiest and started to work on it.

My bothers have every toy known to mankind. They have chain-saws in all sizes (some even on a long pole), loppers and we used a skid steers, something you would not normal use to prune trees. My brothers thought that it would be easer than using a ladder. You have to understand my brothers. They think everything has to be done with large, powered equipment. I saw my little brother once use a backhoe to dig a hole to plant a rose bush!

We spent about twelve hours over two days pruning and trimming and, over all, the orchard looks much better. Next year, with a little more work, it will look even better...

My aunt works at Safari West; it's a wildlife center up the road from my family's ranch. It's like being in Africa without the jet-lag. They have all kinds of animals and special events going on. Last year Chris and I went on the safari ride and it was really fun. This time my Aunt asked me if I wanted to take my picture with a cheetah. Being the animal lover that I am, of course I would not pass up this opportunity. If you're ever out that way you should check it out, it's really a very special place.