My Story

Polymyositis

Pulmonary Fibrosis

My Health Update

My Drugs & Herbs

My Diet & Nutrition

My Healthy Home

Up until 1998, I considered myself a very healthy person. All that changed when, in May of 1999, I was diagnosed with Polymyositis and Raynaud's Phenomenon and, in March of 2001, with Pulmonary Fibrosis.

My Web site is called "Lenor's Journey" because that's exactly what it's been, a journey! Along the way I've learned a great deal about myself, my inner strength, my determination, and my fears. I've met some extraordinary people that have gone above and beyond the call of duty, and I've also been hurt by people I counted on. I decided to create this Web site for my friends and family and for the others who have one or more of these diseases. I want to share my experience to let others know, as I do, they are not the only ones dealing with this. My goal is to retire at 65 with both lungs intact and collect my 401K.

So, welcome to my site and thank you for joining me on my journey for a
healthy spirit and most of all a fulfilled and long life.

Cheers! Lenor

I grew up in the Napa Valley and moved to New York City at the age of 25. I know what you’re thinking, “Why would anyone do that?”. I am one of the few people that move to the East Coast and love it. I fell in love with the changes of the seasons, the people and the pace. I am what you call a Type A personality… I love to work and play hard. I made the conscious decision early on in life that I wasn’t going to have children and wanted to be a career person, so I put everything I had into it.

Before I got sick, I considered myself an active person. It was not uncommon for me to mountain bike, rock climb and go to the gym all in the same day. I also considered myself a healthy person. I’ve been a vegetarian for most of my life. I’ve never done drugs, smoked anything and I’m not a big drinker.

At 34 I saved enough money to buy a house in Fairfield County, Connecticut. That in itself was a huge accomplishment for me. My little 1,500 square foot house sits on two acres of land that backs up to a wooded nature preserve complete with deer and other wildlife. I could mountain bike and rock climb right in my own back yard. It was a dream come true.

In my first six months as a homeowner, I worked on the house night and day, ripping out and painting walls and doing a lot of yard work. At the same time, I worked harder than I had ever worked before. Each month, I commuted back and forth from Connecticut to California for a week at a time. Needless to say, it was a time of great stress as I was burning the candle at both ends.

Some time in September of 1998, my hands and neck became very stiff. I thought it was due to yard work so, of course, I ignored it. Weeks went by and my condition wasn’t getting any better so I went to my chiropractor in order to work out these kinks She told me I should be tested for Lyme Disease. Even though I never saw any evidence of a tick bite, this made sense to me since I had been outside doing lots of yard work and Connecticut is an area where there have been many occurrences of the disease. I had my MD test me for Lyme and he put me on antibiotics that day. The test results came back positive negative, which means in plain English, that the test results were inclusive. I was starting to feel worse and found it hard to sit down and walking up stairs was impossible.

In October I went to see a doctor that specialized in the disease. He began my treatment by ruling out what I didn’t have. The first disease to eliminate from the list of possibilities was Meningitis. So on Christmas Eve 1998, I went in for a spinal tap. It came back negative, good news, no Meningitis! The next step was to send me to a Rheumatist to rule out any disorders in that field. My story might have been very different had this doctor not missed the Polymyositis. He concurred with the diagnosis of my other doctors and sent me on my way. My liver tests continued to be elevated about three times the norm. Even though all of my tests came back as positive negative, or inconclusive, the only thing they could come up with was Lyme Disease.

In February of 1999, the doctors put me on IV Rocephin for nine weeks with the hopes that this treatment would be effective as all other antibiotics had failed. After the ninth week, I still wasn’t any better. I found it hard to breathe, to swallow and walking was almost impossible. I needed help getting to the bathroom and the bedroom.

All the while, I continued to work. When I traveled, I checked into handicapped rooms and asked for wheelchair assistance at airports. I felt so bad and cried all the time and believe me when I say that I am not a crier. My whole body hurt. I felt like a ninety year old person had taken over my body and I was only 36. I just kept thinking “I have to keep going or I’ll lose everything I worked so hard for.”

I continued to search for answers for my condition and on May 21, 1999 I went to see a liver specialist at Yale University School of Medicine. He asked me if I had ever been tested for HIV. My first thought was, “Great, I have AIDS. How am I going to get through this?”. My answer was no. He admitted me to the hospital that day for testing. My HIV test came back negative, however my CPK’s were 11,200 (Normal is between 55 and 127). It was at this time that I was diagnosed with Polymyositis. I never had Lyme Disease. They confirmed the Polymyositis with a muscle biopsy on May 24th. I was so happy that they had finally diagnosed the problem. I’m going to live! Polymyositis isn’t life threatening unless there’s lung involvement, and I didn’t have that! I was released from the hospital on May 25th taking 60mg of Prednisone per day. I was on the road to recovery, or so I thought…

I found a new Rheumatist and started treatment for Polymyositis. He started me on Methotrexate. My CPK’s levels went up and down over the next 2 years and I developed Raynaud’s Phenomenon (Raynaud's Phenomenon is a disorder that affects the blood vessels in the fingers, toes, ears, and nose. When I get cold my fingers and toes turn white and then black. Raynaud's Phenomenon can occur on its own, or it can be secondary to another condition such as Polymyositis). My dry cough came back some time in February of 2001 but I adjusted to my new life. I couldn’t do everything I had done before I got sick – my mountain biking and rock climbing days were definitely over - but I was grateful I wasn’t in any pain. I was able to move around some – more like an old lady than a 37 year old but I was okay with that.

On March 3, 2001 my world came to a halt when my doctors discovered I had developed Pulmonary Fibrosis while on the Methotrexate treatment for Polymyositis. Pulmonary Fibrosis is a lung disease with pronounced honeycombing at the base of each lung, My Rheumatist sent me to a Pulmonologist and he confirmed the disease. He told me I had to treat my health like my second career. Great, like I didn’t have enough to deal with already. I didn’t want my health to be my second career. I just wanted to wake up and feel good and now I knew that that was never going to happen.

I went home and looked up Pulmonary Fibrosis and what I discovered wasn’t good. Everything I found came up the same – prognosis: three to five years maybe four to six years and lung transplants. I felt like I had just been given a prison term with no hope for parole. Down I went, depression all the way. So they added Zoloft to my already quite long prescription list. Zoloft is an antidepressant medication. And they changed my drug from Methotrexate to Imuran. Imuran is less toxic on the lungs. As if that weren’t enough, in November of 2001 I ended my six and a half year relationship with my boyfriend. So much for that support! Needless to say, December was tough, but I love a good challenge.

So I reviewed my life. Let’s see…. I have an autoimmune disease I can’t control, I’ve been diagnosed with a terminal lung disease, my boyfriend is no longer in the picture and I’ve gained 30 pounds from the Prednisone. (Can you believe the 30lb weight gain is what upset me the most? I think you have to be a woman to understand this one). What should I do? Where should I start? What does a normal 39-year-old woman do when she’s depressed and fat?

GO SHOPPING!

I had saved a bunch of money over the years and since the stock market wasn’t doing anything with it, I thought I should do a little investing of my own. I repainted the inside of my house. I bought a new bedroom and dining room set. I installed a sauna and a surround sound entertainment system in the loft above my garage. Oh yes, and a new boat! A 26-foot Chris Craft. I used to sail, however now I didn’t think I would have the strength to sail, so a powerboat it was. My thought was, if I can’t fix my health then I’d fix my house and have fun- more female logic!

In February 2002, the Imuran wasn’t working and I was scared something else was going to go wrong, so I pushed the doctors for something new. They put me on IVIg. On March 12, 2002 I received my first treatment. I started to feel better and over time my CPK’s went down to 267 and I was down to 5mg of prednisone and 25mg of Imuran. I lost 25 pounds and was feeling great. I had no breathing problems or cough. The lung test remained the same and I felt and looked better than I had in years. I even went off the Zoloft.

On April 13, 2002 I had my first date in over seven years. It happened out of the blue. A friend called and said he heard I was single again and would I like to meet his brother? Okay, why not? I can’t keep spending money forever.

Chris was unbelievable - a dream came true. Not only was he the most compassionate, and thoughtful person I’d ever met, he was also great looking and in great shape. Chris was recently divorced and had just retired from the Marine Corps after 24 year of duty as a helicopter pilot. On our first date I explained all my medical problems to him – and to his credit he was still up for the challenge of a second date. He’s been by my side ever since. I know without a doubt in my mind he wants to be here. He gives me the strength I need. He is my angel.

In July 2002, it was time to renew my prescription for the IVIg. The company I work for changed insurance companies and the new insurance carrier denied the coverage of the IVIg. (It’s very expensive.) At this point in time the IVIg was effective in the treatment of my illness and I had my life back. So, understandably, upon hearing the news that the new insurance company didn’t want to cover the treatment, I went nuts. I contacted the Connecticut State Attorney General’s office, the president of my company, my boss, the human resource office and anyone else that would listen. In five days, the IVIg was approved for another six months. Sometimes you just have to scream a lot to get what you need.

In January of 2003 I turned forty. Chris and I went to Tahiti for two weeks. It was a trip I’ll never forget and was also the first time I had ever taken two weeks off in a row from work. I felt great and never coughed and I got lots of rest. I was taking 10 mg of prednisone and 50 mg of Imuran. When I returned home, I went in for a breathing test. In 6 months I had lost 10 percent more of my lung capacity. I had somewhere between 48 and 38 percent left. It was time to try a new drug. So I went off the IVIg and started Remicade.. It was also time to really make changes in my life. This was the turning point.

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