Half Marathon

It’s been a while since I updated this blog. Much has happened in my life. Before I start, let me say that my MS has been stable, no exacerbations. I still struggle over what I want to do, what I can do, and what is good for me to do.

As I’ve written previously I am a runner. Running is my barometer which I use to check myself. If I can run then I’m okay. I decided to train to run a ½ marathon. I don’t know if other people with MS have done this or even if the training and race would be too taxing on my body. I decided to take it day by day, see how I felt and, well, go for it. I searched the internet for a training regimen geared toward intermediate runners to get myself ready to go from running 4 miles to running 13.1 miles. I trained for 12 weeks, steadily increasing my mileage. By race day I found myself in the best shape of my life. I trained 5 and sometimes 6 days a week, with one long run each week. I lost 10 pounds.

On the day of the race it was foggy and cool. Perfect. I ran the 13.1 miles in around 2 hours. I never walked, even when other healthy-looking people were walking. When I crossed the finish and put the “finisher” medal around my neck, I remember the pride and excitement of finishing my first marathon. I wanted to shout to everyone around me and to the spectators lining the road, “I just finished a ½ marathon and I have MS!”

Injecting: If I Can Do it, You Can Do It...

When I tell people that I take injectable medications for MS they ask me how I can give myself an injection. They say they could never do that to themselves. “But you’re a nurse,” they say, “that’s why you don’t mind shots.”

So, then I tell them about giving myself my very first injection. I had given many subcutaneous (below the skin, into the fatty tissue]) injections to my patients as nurse. But giving an injection to myself was a different story.

I got all of my supplies ready. Cotton ball, alcohol prep pad and the syringe. I read the instructions 3 times, even though I’ve done this to other people many times.

I exposed my thigh, rubbed the area I had chosen with the alcohol pad, uncapped the syringe and said,”One, two, three…” On three I was supposed to inject, but I didn’t. “OK, one…two… three…” I sat there with the syringe poised over my leg but froze. I couldn’t do it. I sat there for 30 minutes like that. I went through 10 alcohol pads prepping the site each time I would attempt to inject.

My hand began to cramp, my neck started to hurt from looking down at my leg, I could feel my heart racing and I started to sweat. “Come on, you’re a nurse! What’s wrong with you?”
Finally, I just did it. I didn’t even clean the site that first time with an alcohol pad, but I did it. I injected. The next day, it only took my five minutes before I injected and after that there was no hesitation.

I’ve found that giving myself injections has helped me give other people injections. It also has helped me teach my patients how to give themselves injections (mainly insulin and lovenox).
I’ve learned the following tips:

• Inject fast, push the med slow, over 10 seconds at least.
• If you are injecting into an area without much fatty tissue, inject at a 45 degree angle. (This is the way I must do it since I am thin.)
• The med should be room temperature when you inject. My medication (Copaxone) can be left out of the refrigerator for 30 days. If you must inject a med fresh out of the fridge, roll the syringe in your hand first to warm it up.
• After I inject, I apply light pressure to the spot with a towel or cotton ball to prevent the medication from oozing back out or in case the site starts to bleed.
• I make a habit of not injecting before I exercise, because I find the area becomes more sore than usual.
• Inject at the same time each day. For me, its 5pm.
• Have a pattern to the areas you inject. For example, with Copaxone the med is given every day. I have seven locations so each day of the week I inject to same area:
  Monday: Left thigh
  Tuesday: right thigh
  Wednesday: abdomen
  Thursday: left hip
  Friday: right hip
  Saturday: left buttock*
  Sunday: right buttock*

It goes without saying, that if you have questions or problems injecting your medication consult your health care provider….

*The directions for Copaxone say to inject in your arms, but I have almost no fatty tissue there and I have injected into my muscle which really hurts. I inject in my butt as an alternative site.

Embarrasing moment...

I'm in the midst of my second exacerbation. It started on Christmas day. My upper legs felt slighlty numb, kind of like what it feels like to touch skin through clothes, even when I was touching my skin directly. I didn't think it was an exacerbation at first. I hurt my back about two weeks before so I thought maybe that was the cause of the numbness. I now feel the numbness from my belly button to my toes anteriorly (just the front of my body). I have no loss motor function. I went online and did some research and came to the conclusion that I am most likely having an exacerbation.

In the midst of this I continue to run and exercise and to work. I feel fine other than the numbness. But a weird (and totallly embarrasing) thing happened to me last night. My husband and I stayed in a hotel/resort for our 20 year anniversay and we decided to work out in the hotel's fitness center before going to dinner to celebrate. The fitness center was crowded. I ran on the treadmill and was feeling good. I only wanted to run for 30 minutes so I ran sprints (running fast then recovering by running at my regular speed). This gives me a good workout in a short period of time.

All of a sudden I was down on the treadmill. I tried to stand back up and couldn't because the belt was still moving at 7.0 MPH. I let go and got launched off the tread mill and landed on my back on the floor. I heard a lady scream and a man came over to help me. I stood back up on my own, said, "I'm OK, " and got back on the treadmill. I ran at a slower pace for another 10 minutes. Mainly because I was too embarrased to stop.

I'm not sure what happended. Did my legs give out? Did I trip? Did I step onto the stationary area of the treadmill next to the belt by accident? When I run on a treadmill my mind tends to wander and I don't pay much attention. I just listen to my i-pod and run. This is why running is a relaxing activity for me (I know that sounds weird). Anyway, I didn't get hurt, other than "road rash" on my calf and skinned knees.

I'm more disturbed by what caused me to fall. I now feel vulnerable. Is it safe for me to run, to climb steps, to walk across the street? Does any of this have anything to do with my MS and the exacerbation?

After crying in the shower in frustration, I decided to take a deep breath, pull myself together and go to dinner with my husband. We had a great time at dinner and I felt fine. I don't know what happened on that treadmill but I do know that I need to be more careful, slow down and pay attention.

Another learning experience in this unpredictable disease.

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.

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.

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.” (http://news.ufl.edu/2005/01/13/msexercise/).

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.” (http://www.nationalmssociety.org/)

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.

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.