I was born and raised in a small town bordering the Hudson River in NY state. My family is middle class, both parents, children of Italian immigrants, born in the Bronx. My father was a Sgt. in the army in WWII, stationed overseas.
I had a pretty unremarkable childhood. I had a sister 9 years older than me and a brother 2 years older. My mother didn’t work. We went on yearly vacations. I was a tomboy, always outside playing in the woods and constantly finding lizards and tadpoles in streams and lugging them home. I’ve always been a water bug too, ocean, lakes,pools, even some ponds and I was in them. Typical teenager, hated my mother, ran away from the age of 16 through 18. I was an okay student, skipped classes, but I always passed, although I didn’t even try. No college. During my last runaway, I left NY with my future husband and went to Florida where surprise, I got pregnant.
Back to NY and marriage. I didn’t have to and I didn’t want an abortion, those were my decisions. I’ve always been and still are a homebody and I always loved babies and children. So there I was married and with a baby at 19 trying to make a nice home. I worked, I’ve always worked, sometimes up to 3 jobs. Regardless my husband was an alcoholic, which I didn’t even know what one was, (I was raised very naive). I knew he drank and smoked pot but we all did. At 22 I had my 2nd child. That was it, a girl and a boy and I was done. I was divorced at 29, tons of drama there, which I won’t get into right now. (I am fast tracking my life to get to the sucky part), my diagnosis of multiple sclerosis.
I was 35 and my feet were numb. I attributed it to being bunched up in socks all winter and thought my feet just wanted to be free. I finally went to my doctor, a woman, general practitioner. She sent me for an MRI and when the results came back she had a neurologist in the office and I was diagnosed at that time. He wanted me to have a spinal tap to be sure. I had heard terrible things about having a spinal tap, but someone told me to have the doctor give you a valium around an hour before the procedure. That was one of the best pieces of advice I’d ever been given. I was so relaxed I didn’t feel anything and didn’t tense up and I never got the migraine that everyone talked about afterward.<I’ve always been very healthy, I still am, except for this MS.
At first I thought I was misdiagnosed, I felt fine for a long time. The doctor had wanted to put me on medication, the Interferon’s were just coming out. The problem was I had no health insurance. He said he would give my IV steroids daily for 3 days at $100 a day. While I was there, another doctor had just came back from the prison where he was giving aids drugs to the prisoners, Now I wouldn’t deny anyone medicine they need, but I felt that something was wrong, that they got their expensive medication free and I, who had continually worked and paid taxes couldn’t get what I needed. Today it is different, there is all kinds of help.
I had been diagnosed with Relapsing/Remitting MS or RRMS. I have to say that the day I was diagnosed I was alone. My fiance at the time was away for the weekend on a hunting trip with a friend upstate. He called and I told him and all night I stayed up thinking he would surely return. Well he didn’t, another example of me choosing men that are emotionally unavailable. This is not the man I’m married to today.
The first bad symptom I got was losing my eyesight, (optic neuritis). I was put on IV steroids again and it took about a month and my eyesight came back. Next my legs totally went. I was admitted to the hospital and yet again put on IV steroids. I was calling them my jump start because they always got me going again. I didn’t mention those side effects, I ate ALOT, but I didn’t blow up, (gain weight) which was good. I was also pretty cranky, put it this way, everyone knew when I was on steroids. Also the damage it does to your liver.
The opportunity arose where I was able to be put on his insurance since we lived together, (that was a new benefit at the time). Finally I could get a one of the new medicines. My first attempt at an Interfuron, I can’t remember which one, was a muscular injection, and it sent me into convulsions and that was the end of that. Finally the injection that I tolerated well was Rebif, a subcutaneous injection, which I was on for years. I had no problem giving myself injections.
Next my neurologist suggested I go to an MS Center. I found one I could drive myself to at Helen Hayes Hospital. This was great, they fitted me for a wheelchair, which I still use. I had physical therapy and things were looking good. After two years, they were closing the MS Center. Back to my old neurologist, whom I liked very much. I also enrolled in a test that was in Jersey and had to get a ride to and that was like pulling teeth from, my fiance begrudgingly did it and also drove like a maniac all the way there and back. Eventually I had to drop out and then found out I was taking the placebo anyway. At this point, I was late 30’s into my early 40’s. I was using a cane and still got around fairly easy. My legs would get tired and I’d have to sit more often and rest.
I left my fiance in 2001 and moved into my own apartment with my son who was an adult. I had shut down the nursery because of the physical difficulty I had with my MS. This put me into a big depression. Then 9/11 happened. I watched it occur in real time on TV. I was deeply affected and in the weeks that followed I was obsessed, I couldn’t get enough of the news, I was even reading Soldier of Fortune Magazine. I met my future husband on Halloween in 2001 right after 9/11.
My girlfriend #1, loves to dress up and I don’t. I agreed to go with her to a local bar/restaurant for their Halloween party. My “costume” was a pair of Levi’s, a white t shirt with the American flag, a tool belt, hardhat, work boots,and a face mask. I went as a 9/11 worker. People were calling me Heidi from Tool Time, I was adamant about who I was dressed as!
I didn’t hear from him until spring of 2002 when he showed up when I was working at a friends nursery. I was surprised after all that time he remembered where I was and asked me out. We went out to dinner and I guess I had previously told him I had MS, because we talked about it. I was relieved. After that date, we stayed together until we got married. I kept my own apartment because it was nicer and bigger than his house, (he was going to do a huge addition). I didn’t move in until after the wedding. I walked down the aisle with a cane, (covered in pearls, courtesy of my daughter) escorted by my son.
Now that we were married, I was able to get on his benefits which were excellent. I was working at a friends hair salon as a receptionist, which I loved. From there I was working at 2 different salons on different days. A good friend of mine who was a hairdresser was working at another salon and they offered me more hours so I stopped with the other two. I loved that job! It was very social and I was good at it. I was still just using a cane.
My next drug was Tysabri. I was so happy I didn’t have to do those shots anymore! This was a 3-4 hour infusion and it was at a center close to my home. I did so good on this drug, I was walking and living good. There was only 1 big side effect and that was an infection in the brain, PML, that could cause severe disability and death. I was one of the first taking this drug and they didn’t have research beyond 3 years. When I reached the 3 years they did an antibody test to see if you had markers for getting PML and unfortunately I did. To my disappointment, I was taken off it.
By this time I was with my future husband and I was going to another MS Center, The Corrine Goldsmith Center for MS at Mt. Sinai Hospital in New York City and seeing one of the best doctors in the world for MS. I was taking Baclofen for the stiffness in my legs, Ampyra and Copaxone, oral drugs that slowed the progression of MS and Effexor for depression. I stayed on these for years. I was very satisfied seeing my doctor at Mt. Sinai. For about 4 years I was able to walk from the parking lot to Mt. Sinai, about 5 blocks, with a cane, then a walker. This was about when I was 44 to 51 years old. During this time I needed to get hand controls for my SUV. I took the class and was very nervous about using them. I didn’t drive for about 3 months because I was afraid. I realized that if I wanted to go out I had better push myself and get used to using them, which of course I did.
In 2010 my husbands company was sold and he was offered a job based out of Richmond, VA. We left all family and friends and relocated. We bought a home with the master bedroom on the main floor in a nice neighborhood. At this time I was driving but had stopped driving on highways. My peripheral vision wasn’t that great so I was and still am driving local roads.
I saw an ad for becoming a Master Gardener in the paper, so I googled how far away it was, and the classes were five minutes away, yeah! I had always wanted to do this as I love gardening and thought it would also be a good way to make friends, (see Gardening History). I was still getting around with a cane. I became a Master Gardener and I was volunteering at different venues and I took over the publication of the newsletter. All these years later, I had acquaintances, but no one I can call a friend to go shopping with, movies, coffee, etc. Within 3 years I was using a walker full time.
When we first moved was also looking for a new MS doctor. My doctor in NY had recommended an MS Clinic in Charlottesville, VA, about an hours drive, with a colleague of his. I first tried to get an appointment only to learn she was out on maternity leave. I tried to get an appointment with another doctor and I couldn’t. The receptionist was very rude and wouldn’t give me an appointment. I was in tears. Finally after 5 months I was able to get an appointment. We went and I was encouraged and we started to talk about me getting a Baclofen pump. He was going to recommend a neurosurgeon in Richmond for me to meet with. I never heard from him again, and when I called was told that doctor was no longer there and I got an appointment with another one. There was no record of me being there or the discussion about the pump. This doctor didn’t want to go in that direction. I talked to my doctor in NY and he contacted his associate in Charlottesville and she personally called me. She offered to be my doctor when she came back and apologized for the mixup.
I declined. In the meantime I was trying to get an appointment with a neurologist in Richmond. This doctor was also recommended and guess what, I couldn’t get an appointment for 8 months! In the meantime, I had a bad turn and ended up in the hospital, again on oral steroids. I was dehydrated too. There a neurologist saw me but he wanted to change everything I was doing and I didn’t feel comfortable with that so I didn’t make an appointment with him. When I left the hospital, I had physical therapy and my physical therapist was the one who finally got me in to see the doctor I had been waiting for.
This was not an MS Clinic and he was a neurologist who handled MS patients. We discussed the Baclofen pump and I was scheduled to meet with a neurosurgeon and schedule the procedure. The reason to get the pump was that one of the side effects of taking the pills was fatigue. I was told with the pump, you get less of the drug and it goes directly into your spine with better results and no side effects. The pump is inserted right below your stomach with a tube going directly into your spine. It was supposed to be a routine procedure. Almost immediately following the procedure I developed a hematoma, a large inflamed, bruised site where the pump was inserted. I was sent home and he wanted me to send pictures if it got worse, which it did (I said I had an alien baby in there).
The neurosurgeon said it had to come out. So in the hospital I went, another routine procedure. They said I came out of surgery, ate dinner, talked on the phone to my kids, which I had no recollection of. Sometime during the night I was rushed into ICU, unconscious. My husband was called and it seemed that I was going through withdrawl. He kept telling them that I hadn’t had any of the drugs I take for more than 24 hours and the Baclofen even longer. Anyway I recovered, left the hospital and started physical therapy again. I just want to note that while I was in the hospital, they lost my Ampyra, ( it is a specialty drug, therefore I had to bring my own supply) but they wouldn’t let me hold it. This is also the only drug I’m on that has to be taken at the same time 2x day, which I couldn’t get at the times I needed. Also upon discharge I was given a prescription for Oxycontin, amount 100 pills! I had never taken these while I was in the hospital and I have no idea why it was given to me. I have a brother who was addicted to pain pills and who put me through hell so I was sensitive to how easy it was to get these pills.
I recovered, never went for a second try and the walker was how I got around. I loved the new place for physical therapy and the physical therapists I worked with. The place was brand new and I could drive there and I tried different types of new machinery that was available. After 6 months I stopped. Since this hospitalization I have been pretty much the same as far as progression. I fell once and fractured 2 ribs. Around this time I was getting interested in the botanical gardens. Again I investigated how far away it was and it was only a 10 minute drive.
At first I thought I could only volunteer in the library because it was sitting down. Any volunteering here had to be in the wheelchair. A lot of the opportunities were working outside and also in the heat. While there I volunteered where I could. I worked in the basement helping with the Gardenfest, I helped prep flowers in a classroom, I attended Lunch and Learn, free classes they gave their volunteers. While in the library I suggested having a storytime for parents and toddlers, which they did start and it was very popular! I loved their garden shop (brought me back to mine), they had unique items that I would have carried in my store, (see Gardening background). I didn’t think I could volunteer there because I couldn’t stand behind the register. Well when I was talking to another volunteer about it, she literally dragged me to the garden shop and got me signed up!
Right now the library and other opportunities are shut down because of Corona virus but the garden shop opened a few weeks ago and they called their favorite volunteers, (only 11 of us) and the gardens are open Thurs. through Sunday with timed visits and all precautions throughout the garden and garden shop. That is where we are now. As far as the MS, I stopped Copaxone and have been receiving Ocrevus, an infusion, twice a year for three years. I don’t think it does anything, and he was going to put me on a new drug, Mayzent, out for Secondary Progressive MS, which is what I now have. This new drug affects your immune system so he didn’t want to start it during this pandemic.