I was diagnosed with Multiple Sclerosis on August 27, 1986. I was 27 years old at the time and an extremely active person. At the time I was very involved in 2 Community Theatre groups doing just about everything I could. There were many weeks of going to my full-time job, and going directly to the theatre and working until 11:00-12:00 p.m. all every night; only to return on the weekends to do more of the same for many long hours. At the time I was working on: set construction, set painting, Stage Managing, Property Construction, Property Management, Stage Crew so yes, the hours were long. In the summer months I played softball with the Park District and worked with another summer theatre production at a local church.
Hearing a diagnosis of MS was the last thing I needed. I didn’t know anything about it, other than what most people think. Cripple. Wheelchair. No, not the thing for someone like me – or anyone for that matter – to hear and take well. I was also told at the time by my neurologist, that judging from the amount and age of the plaques that were present; I’d had MS for at least 10 years! However, the symptoms were most likely so mild that I didn’t pay much attention to them. This is pretty much how the disease can and does start out.
I was one of the fortunate ones in being diagnosed within 2 weeks of my initial trip to a doctor for symptoms. It was while in the hospital for kidney stones that I complained of problems with my eyes. The only way to explain it was that it looked like I was looking through Swiss cheese. There were holes, pieces of the picture missing. They sent me for CAT scans and found nothing. I was referred to an ophthalmologist. One of the first things he said to me was, “Well, you either have something wrong with your brain, or you have MS.” I laughed and said that I already knew there was something wrong with my brain! It was more serious than that obviously. He immediately gave me the name of a neurologist and I saw him the following week.
Upon explaining my symptoms, and symptoms that I’d had over the years, after asking me many questions, he too said, “It would look like you may have MS.” He set up an appointment for me to have an MRI. My “fate” was sealed at that point. After getting the results of the MRI, I was told I did in fact have MS. I was hospitalized the next morning. I say I was fortunate, because many people go years with symptoms that they cannot explain, and get no explanation for from doctors. Many are told “It’s all in your head.” How ironic that this is exactly right! But not in the way they are meaning it.
THE STRUGGLES BEGIN
The first 2 years saw me in and out of the hospital several times with exacerbations (attacks). Most of them were minor. Usually problems with my legs, a heaviness, an inability to lift them that affected my walking, more problems with my eyes, numbness in my hands and weakness of the limbs. During this time, I also started having a lot of trouble with my back due to a car accident many years before. I was seeing both an orthopedic surgeon and a neurosurgeon and after many CAT scans and a Myelogram, it was determined that I had Spondylolysis of L4 and L5. What that means basically, was my back was “broken” at those points. This became my “secondary disease” and I needed surgery to correct it. The surgery was to be done in the early summer of 1987 but had to be put off for a while.
1987 was not a good year for me. In January I had an attack and was in the hospital for 2 weeks. In February I had the Myelogram done which cost me 3 days in the hospital due to the MS. In March I had my most serious attack to date. In July I had a benign tumor removed from my breast. In October I finally had my back surgery – 7-1/2 hours’ worth of surgery. As you can see, 1987 was rather a medical nightmare.
Over the years I’ve had many attacks, more than I can even remember now. I’d been in the hospital so many times, it became a second home to me. My longest remission has been about 3-1/2 years. Normally my remissions have averaged 1-1/2 years. The neatest thing was when home health care came about. Of course, I was pretty much able to do most of the IV stuff myself by that point, which made me a great patient. The only thing I can’t do is start the IV. To this day I cannot look while they insert that catheter for the IV line! I can prepare my medication, hook up the line through the pump, take care of air bubbles, do my own flushes on the heparin lock, and if I have to, I can pull the catheter if it becomes infiltrated as well as unhook myself when the medication has finished.
This ability, made me at times, a hospital patient that is not so welcome. Until they get to know me. The last thing a nurse wants is a patient who can do their job! Over the years, they began to love to see me come in because I would do so much for myself and was rather self-sufficient. It was always funny when a new nurse would come in and question who it was that filled out my I/O chart, who had dumped my “hat”, how did I take a shower by myself with the heparin lock, who brought me clean towels, where were my dirty towels, how did I know where to get the ice and water from etc… I and the nurses who knew me, would snicker because they just let me do it all myself. Okay, sorry, I digress…….
THINGS START TO FORCE A CHANGE OF LIFESTYLE
From mid-1989 to the beginning of 1993 however was a very rough time for me. It became like clockwork. Every 3-4 months I had an attack. Each one required one month of being on an IV every day for 6-8 hours a day. Depending on the severity of the attack, the first day I may have had to have two 8 hour doses with a 6 hour break between them. Thankfully, I was able to sleep during the nightly dose as I was so used to having this additional “appendage”. Normally the last 3-4 days I received my medication by injection as the dose gradually decreases each day. Due to the duration of daily treatment it meant being off of work. Thankfully, I have very understanding and kind employers.
During that time I was unable to do anything in theatre. I wasn’t able to do much at all. MS began to run my life. I started not doing things because I was afraid of what would happen. The attacks had become so regular that I refused to plan to do anything beyond a weeks’ time. It was a very dark time for me. A time that I began to start really “shutting down” emotionally. Only I didn’t realize this until quite recently.
I have had to be hospitalized a few times since 1993 and was not able to use home health care. Treatment has changed over the years considerably. The course of IV therapy is now shorter and the strength/dosage of medication is also higher. Possible side effects are quite different as well. Because of this, my doctor felt it best I be in the hospital when starting this initially. There was a time that my symptoms got worse during home treatment and I needed to start the treatment over and be under the care of my doctor.
While taking Betaseron (one of the “A,B,C” drugs), it had the opposite effect on me. I had every side effect possible. I had severe site reactions, high fevers, severe chills, flu like symptoms, racing heartbeat, became severely depressed, suicidal and had a split personality. The final straw was, it caused an attack. My only choice was to be hospitalized.
The attack I had in March, 1987 was the most frightening, humiliating, agonizing, devastating, frustrating time of my life. At the same time, it was a most enlightening and humbling experience. It is something I will never forget, nor do I ever want to simply because it taught me so much. There is no way that I can relate to you exactly what happened and what it was like. I don’t think someone can truly understand or even imagine what it was like. Many with MS that I have talked to, cannot even do so because they have not experienced anything like it.
I will try to sum up for you the best I can what happened during that time. It is impossible to convey in words, a physical abnormality. So bear with me and I guess use your imagination. Actually I looked quite similar to someone who has Cerebral Palsy. That would be the best way to describe my condition. I was also much like a stroke victim.
Keep in mind for those of you that don’t know me, that today, I am once again involved with theatre. I ride an 1100 cc motorcycle solo that I have taken several long trips on, one trip was 1800 miles. I have traveled coast to coast alone . I go camping sometimes alone, sometimes with others. A new hobby is woodworking that I am learning from my father. People who see me cannot believe that I even have MS.
Also keep in mind, that what I am going to tell you is NOT so that you feel sorry for me. Quite the contrary. It is to educate. To share. To let people in which in turn, helps both of us. To show people that there is much in life, no matter how impossible it seems at the time, that you can overcome or learn to live with. It is to show people that having MS does not mean that you must give up your life.
2 thoughts on “In the beginning”
Holy Schnikey, Rae… We have many similar issues going on. And then, some – not so much. A Warrior you are, indeed.
I’m not going to ‘like’ this comment for obvious reasons. You too are quite the woman Lorri – you have been through much and have come out on the other side with a smile – props to you!!! And thanks for all you do in raising funds for MS – You go Scooter Girl!!! ❤