Monday, September 29, 2008

Two Year Anniversary

September 30th is the two year anniversay of my diagnosis with MS. As with all anniversaries, I look back on what has occured during the previous year. I realize that from an MS standpoint, not much has happened. I haven't had any exacerbations and I've settled into my diagnosis. I don't think about my MS as an imposter in my body. It's just a part of me now.

I take take my MS medication everyday without really even thinking about it. I am aware of the nagging symptoms, like fatigue, occasional tingling, and my aversion to bright indoor lights, but I compensate for those things without much thought. I haven't given myself a "neuro check" in a long time or woken up and checking if I can move all my limbs as I did every morning.

Everyday at work I see patients with so much wrong with them that effects every aspect of their lives and they are surviving. The diabetic patient must check her blood sugar four times a day and give herself insulin if needed. She eats a special diet. My heart attack patient takes numerous meds to help his heart, thin his blood and lower his blood pressure. He also has to change his diet from high fat to low salt/low fat. Working as a nurse really gives you perspective. So many other people are living with chronic illnesses and are surviving. Some better than others. Then, there are those that are not surviving despite doing everything right.

So, I've made it through my second year, I'm doing everything I can to stay in remission. I'm dealing with the symptoms. I'm living with MS and I'm surviving.

Saturday, May 10, 2008

Back to Work...

I was cleared to go back to work three weeks after my diagnosis. My neurologist was confident that I could work, but I wasn’t so sure. Would I have the control in my fingers to give an injection? Would I be able to feel pedal pulses? Would I be able to quickly start a Cardizem drip in someone in uncontrolled A-fib (a dangerous heart rhythm)? Were my cognitive abilities good enough to assess a patient and recognize the subtle changes indicating that the patient might be getting into trouble? I lost confidence in my abilities. I was seriously stressed about going back to work.

I thought, just for a few seconds, I’ll take another week off, or two, or three. But I knew that my lack of confidence was not because I couldn’t do the job, it was because I was scared, terrified. But, I knew that I had to get back on the horse. It took every last bit of courage I had to walk through those revolving doors and climb the stairs to the 5th floor.

Thankfully, I was still on “orientation” which meant I had a preceptor that was still overseeing everything I did. My first day back to work was my first shift on nights (7pm to 7am) and was first time taking care of 4 patients. That was enough (without MS) to throw me into a panic. I walked up to the telemetry control center and found my assignment. I could feel my heart pounding, probably not unlike some of the heart rhythms I saw on the monitors! I found my preceptor working at a computer. She was soft spoken and calm. We discussed my assigned patients and her easy-going demeanor calmed me down. I got myself organized and stopped thinking about my MS. These patients were sick and I was going to take care of them.

After my shift, I walked to my car. I could feel some tingling in my legs, that stopped when I sat down in the car. I took a deep breath. I made it through my first night. And, it was just fine. I made it past another challenge. I was measuring myself by the tasks that I accomplished and challenges overcome. It was one step, one hurdle at a time. I tried not to think about my diagnosis or of what could happen. I lived for the moment.

A few weeks later, I was on my own, no more orientation. It was an unusually slow night. I was charting quietly at the computer when I heard the voice over the PA, “Code Blue RM 335.” It was one of our patients. I ran down the hall to the room. The patient’s nurse was performing chest compressions. I stood behind her waiting take over when she got tired. Meanwhile, the code team began filtering in. After two minutes we switched places. I pushed on his chest 100 times a minute, no problem. We switched back and forth until we were too tired and someone else took over.

After the code, the doctor told my charge nurse that I had done some of the best compressions he’d ever seen. Another hurdle. I realized afterward, that during the code I didn’t once think about MS. I just did what needed to be done. I was recovered physically from my first exacerbation and now I was recovering emotionally. I was surviving.

No matter where we are in our battle with MS we are survivors, as long as we live and breathe and jump the hurdles. I’m not kidding myself, I know the eventually there may be hurdles I can’t jump, but until that day comes I will live each day as it comes, I will look up at the stars with my kids, I will run in races and I will save lives.

Wednesday, April 30, 2008

Exercise: Good for the heart, good for the body and good for MS

I started exercising routinely 8 years ago after my mother died at age 55 from heart disease/obesity. She left me a little money and I used it to buy bikes for my husband and me. Her death was a turning point for me. Either eat right and exercise or I would die young. Period. In fact heart disease runs rampant in my family. My brother was 37 when he had his first heart attack. He’s now 46, has a defribrillator/pacemaker and an ejection fraction of 30% (heart failure). My dad died of heart failure and I have a cousin that died at 45 of cardiomyopathy.

The heart disease factor was one reason I became a heart nurse. I’m definitely the type of person to take the bull by the horns, so to speak. Now eight years later, I still run or do some other kind of aerobic training 4 days a week and do at least 50 push-ups 3 days a week. After recovering from my first (and only) MS exacerbation I continued to exercise and didn’t change the intensity or type of working out I did. As a nurse I knew that any activity that was good for the body would be good for my MS. I used how I was feeling as judge as to how hard I could go. If I started to feel bad, I stopped.

I read some old articles that advised against exercise for MS patients, especially intense exercise, because it could stress the body, raise body temperature and increase MS symptoms. But luckily there has been some research that demonstrates that exercise is beneficial. According to Lesley White, a professor in UF’s department of applied physiology and kinesiology, “after eight weeks of supervised resistance training on conventional gym equipment, eight MS patients had stronger muscles, could walk better, and reported less overall fatigue and disability.” (

Many MS survivors have increased symptoms when they become over heated. Heat does not bother me. I think this may be because my body is conditioned to handle fluctuations of body temperature from excercising consistently for more than 8 years, in all kinds of conditions. I don't have problems running on hot days, although I try not to run if the temperature is over 80 degrees. On those days I run later in the day when it’s cooler or I run indoors at the gym. I would be interested to see a study on this, if it is possible to increase an MS patient’s tolerance to heat by slowly increasing exercise known to raise body temperature. I’ve even found that I can sit in a hot tub and not feel any symptoms.

According the National MS society website, “ In addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms. A study published by researchers at the University of Utah in 1996 was the first to demonstrate clearly the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, improved strength, better bladder and bowel function, less fatigue and depression, a more positive attitude, and increased participation in social activities.” (

I have found that if I exercise when I’m feeling tired or sluggish or even depressed, those symptoms disappear after working out. Seriously. So, like I tell my heart patients, go for a walk, or find some exercise that you can do and do it. No excuses. If you are unsure of where to start, talk to your doctor or go to the National MS society webpage, type in “exercise” in the search box at the top of the page.

Saturday, April 12, 2008

The longest two weeks of my life

The first weeks after I was discharged from the hospital were very difficult emotionally. I wasn’t used to being at home and not having to study, to look up cardiac drugs or practice pharmacology math problems. I wasn’t used to being a PATIENT. I didn’t know what to do with myself. I had way too much time to think. I would think of symptoms I was having and upset myself. I was having odd feelings from the steroids I was taking. My heart was racing and I felt anxious. I felt crawling sensations in my arms and called my neurologist. She said she thought I might be experiencing side effects from the steroids.

My vision was still blurred, but getting better daily. I would feel better when I could do something that required my vision. I cut peppers on my cutting board. I folded clothes. I walked outside, looked up through the trees and saw the shapes of the leaves on the trees against the blue sky.

My doctor told me to take a break from running to give my body a chance to heal from the exacerbation. Instead I took walks down my road with my dog. I know the importance of movement to healing and I tried not to overdo it. I did feel some tingling in my legs as I walked but I enjoyed the sense of accomplishment when I returned home, knowing that I was still able to walk.

As a nurse, I was experienced performing “neuro checks” on patients to test their cranial nerves and the health of their nervous system. I would give myself mini-neuro checks before getting up in the morning. I would declare myself OK (other than my eyesight) and feel better about myself.

I came to appreciate all the things that I could do. At first I had trouble seeing my children’s faces and I would reach up and touch their faces to fill in the pieces. Gradually I was able to see more and more detail. I judged my recovery by how much detail I could see. I can see K’s facial features, then I could see her eye color, then I could see the dark blue outline around the sky blue color of her iris. I was so happy the day I could see the dirt on my son’s face.

During the second week I had finished the course of steroids. I felt that I had recovered enough to run again. I ran several times around the soccer fields near my house, about a ¾ mile loop. I didn’t want to take a chance running on roads. I was able to run the same distance and intensity as before my diagnosis. I felt exhilarated. The bright sun bothered my eyes so I wore sun glasses. I ran at the soccer fields almost every day after that.

My eyesight was near perfect by the end of the second week. I began working on my pharmacology math problems again. My pharmacology test was in a week and I decided that I was going to take it. I worked at it every day for an hour. I still had a month left in my new nurse orientation on the cardiology floor and I felt like I was ready to go back to work. As I finished the problems I would think, “I’m OK. I can do this. I’m gonna be OK.” I went to my neurologist on day 12 after my diagnosis and she declared me ready to go back to work.

I learned throughout this experience of my exacerbation recovery how important it is to measure recovery by the small hurdles overcome. I experienced so much frustration with my limitations and not knowing if I would completely recover. But I also felt such pride in my accomplishments and abilities that I rejoiced in every task that I was able to do as I recovered.

Most of my eyesight was back within about two weeks but I still had some trouble looking at neon lights. It took about 6 months for my eyesight to recover to 99% of what it was pre-diagnosis. Oh, and by the way, I scored a 98% on my Critical Care Pharmacology test.

Wednesday, April 2, 2008

Diagnosis Part 2

The neurologist arrived within a few minutes. He did a full neurological exam. He asked me about remote symptoms that I may have had in the past like tingling, numbness or visual problems. I told him about the tingling in my legs that I feel every once in a while when I look down. And I get dizzy if I look straight up. I thought all of those things were just part of getting older, or from an injury. I'm very athletic, I run, bike, weight train, etc. I get injured sometimes. I attributed those symptoms to that.

Anyway, the doctor showed me pictures from my MRI, with the "enhancing lesions." He explained in detail, the different types of MS
"Are you sure, this is what I have?" I asked.
"I'm sure, but I would like to run a few more tests for confirmation. Some blood work, a lumbar puncture, and I would like to admit you to the hospital."
I asked, "What is the treatment?"
He said, "There is no cure, yet. There are many treatment options available, more than there were years ago, when the treatment was to send you home, and treat you when you had exacerbations. Now, you have many pharmacological treatments, but they're expensive and that's something to consider. Of course, there is always the option to do nothing. Some people make that decision."

I said, "Do nothing, are you kidding? I'm gonna fight this thing. You tell me what I have to do and I'll do it."

I was admitted and started on IV Solumedrol. This was given to treat my exacerbation and to hopefully restore my sight. I called my husband and he left work to stay with our kids, who were 14, 11 and 9 at the time. He brought them to visit later in the day. I was in the hospital for three days.

During my second day, I had a lumbar puncture under fluoroscopy and ended up with a wicked spinal headache for many days afterward. The results further supported my diagnosis of MS.

I was in a state of shock. I couldn't believe this was happening to me. I didn't know If I would be able to go back to work as a nurse. I worked so hard to get through nursing school, especially with 3 kids. My husband worked 2 jobs to put me through school. I graduated in the top of my nursing class and got my dream job. I was saving lives, I was helping people. Why was this happening to me?

I tried looking at MS websites on my lap-top while in the hospital. It was hard to see the lettering unless I got really close to the computer. I was able to see enough, to get some basic information and about the different drugs available. I used my nursing palm pilot drug program to look up the costs of the drugs and saw that the retail of one drug was $1600 a month. I realized that I had just enough information available to me as a nurse to be dangerous and I needed to stop looking things up because I was upsetting myself. I was suffering information overload.

Even though I was newly diagnosed I knew enough to know that I needed to remain calm, try to get sleep and let my body heal.

Each day I had a list of questions for my neurologist. I really liked him. He sat down on a chair in my room and stayed until I was finished asking questions. I asked him If he thought I would be able to work again as a nurse. He said that he couldn't promise anything but he knows nurses who currently work in the hospital who are living with MS.

To this day the doctor doesn't know that that statement gave me HOPE. There were other nurses living with MS and working as nurses in this hospital, the hospital where I work. This was a profound moment for me. At that moment I became a survivor because I was given HOPE.

Diagnosis Part I

I was studying for my Critical Care Pharmacology test. I was working out drug problems and the paper the problems were written on looked faded, like the ink the paper was printed on was running low. I continued to work on the problems. Over the period of a few days, everything printed looked faded and I was beginning to notice other visual changes.

That Thursday I went to a nursing conference and almost fell asleep during the lecture. I have never done that in my life. I was exhausted, even though I had plenty of sleep that night. The following day was Friday. I went to work that morning and got report from the night nurse. I was still having trouble with my vision but I could still see. That was until around 7:30 am when I attempted to draw medication into an insulin syringe. I couldn't see the numbers on that small syringe. I immediately told my preceptor that there was something wrong with me I needed to call my eye doctor.

I gave my patients to my preceptor and made an emergency appointment with my opthamologist. I was very worried because I'm already legally blind in my left eye from a childhood accident. The doctor did a thorough exam of my right eye, including testing my color vision. I was perplexed by this at the time but have since learned the reason for this. He said everything looked fine with my eyes but told me to go to the ER for further testing. I could still drive, I only had trouble seeing writing and fine visual images. I went to the ER and signed in. The place was packed. I sat down and people were coughing, moaning and a little kid was crying.

I thought, "I feel just fine. I don't belong here." I walked up to the front desk and signed out. I told the nurse that I would see my regular doctor on Monday. That night my husband and I went to a potluck dinner thrown by one of his firefighter buddies. I drove home that night and I began having serious trouble seeing the road. I asked my husband to drive. I went to sleep that night hoping that I would feel better in the morning.

That morning my husband offered to stay home with me, but I told him that I felt fine and to go to work. Then, I walked into the bathroom and looked the mirror to see if I could see anything wrong with my eye. I had trouble seeing my pupil. I called my husband and told him I was going to the ER again. I was able to see enough to drive in the daylight, although I shouldn't have done that, in retrospect. I arrived in the ER, signed in and the nurse said that there were only three people ahead of me.

I was brought back almost immediately. The doctor asked me some questions, did a physical exam and ordered an MRI of the brain. After the MRI, I was lying on the stretcher in my little curtained room and I heard the doctor answer the phone. He said my name, then, "Oh, no."

I thought I had a tumor or something. I started to cry. He didn't immediately come into my room. I made myself calm down. After all I know some of the staff in the ER. A few of them recognized my name and dropped in to visit. I didn't want them to see me cry.

The doctor walked in and said, "Robin, I'm sorry to tell you this but it looks like you have optic neuritis, a symptom of multiple sclerosis. Do you know what that is?" Yes, I knew.

"A neurologist will be here in a few minutes to talk to you." Then I really started to cry. You see, I knew about multiple sclerosis. When I was in nursing school, I took care of a 25 year old girl with primary progressive MS, who was admitted after a suicide attempt. That is what I was thinking about before the neurologist arrived...