Final Infusion in Series

Thankfully this morning is the final infusion of a short series. I'm tired, irritable, my heart pounds on exertion, I have zero attention span and have steroid heartburn from Hades. Now just waiting for the other GI effects to start. Can you say Maalox anyone? Today is definitely a "not fit for human company" day. Personally, for me, THAT is the worst part of the steroid therapy. When the physical effects of the steroids hit combined with the irritability. I deal with it by isolating myself. That way I'm not being not so nice to anyone. Thankfully, Mark has seen me through enough steroid rounds that he knows what to expect and knows that I isolate myself so I don't subject him to ME during this phase. (He's probably EXTREMELY grateful that I DO. LOL).

Enough whining.

Dealing with medication side effects is often the most challenging aspect of being treated for ANY medical condition. Weighing the discomforts of the side effects vs. the benefit of the treatment. I faced the same dilemma the last time I was on Rebif. I lasted 3 months on the treatment before I simply couldn't tolerated the side effects anymore. (I had a terrible time with the "flu like" symptoms. High fevers, total body aches, malaise etc. It got to the point that I didn't think I was going to be able to continue to work. That was when I switched to Copaxone. Did very well dealing with the minimal side effects I experienced on the Copaxone. However, it wasn't as effective for me with not only helping prevent exacerbation's, but the severity of the exacerbation's were increasing as well). I re-started the Rebif month ago. As Rebif is a medication that you titrate the dose up over a month period, my first full strength injection was last night. So, in addition to dealing with the steroids, my body is also dealing with a bit of a fever today. Yep, not fit for human company. Anyway, I digress.

Back to weighing side effects vs. benefit. This is where I focus on weighing side effects vs. benefits. Steroids, as I have stated in a previous post, I try to avoid at all costs. It's a personal decision for each of us. One where no matter what the health issue we have to come to our own point of deciding that either the benefits of treatment out weigh the consequence of the disease progression or the treatment side effects are taking too much away form our quality of life. We each come to a point where we feel "we have no choice".

For me, the decision to take the steroid treatment (that I know is going to be a challenge) is when the vision issues start or when an exacerbation continues to progress to the point where a previous "inconvenient" neurological symptom becomes severe enough to interfere with my daily life's activities (like requiring a walker to walk for balance issues). Or, a new "symptom" appears which is significant enough to be more that an "inconvenience". That's what happened to me in late June. After I experienced a major stress in early June about 10-14 days later an exacerbation started. This exacerbation started the way MY exacerbation's typically do. My balance started subtly deteriorating and my hands forced me to use plastic. However, a new symptoms reared it's head, and it was ugly, and scared me as it progressed. I started forgetting things. I'm not talking about things like where I put my keys. It started innocently enough. I misplaced one of my cordless phones. Heck, we've all done that. No biggie I have two. Unfortunately with my hearing I can't discern WHERE sounds come from with the implants on, so when it rang I couldn't locate it. Mark was out of town, (had just left) so I was on my own. Then, I misplaced the second one. Never, done that before. I was just frustrated with myself, and still didn't realize that I was having a cognitive problem. I didn't realize something was really wrong for a few more days. I started doing odd things. One day I was going to make bread. I got the yeast out, measured the water. Then for some reason not only did I stop the entire process but when I went back into the kitchen I couldn't remember WHY I had the yeast and measured water on the counter. Things like that continued to occur. Mark came home after a few days and located the phones. We had a laugh over the phones and discounted it. However, now I was starting to have "not so subtle" balance issues. Was back to using the cane full time, and as I had taken a non-MS related fall in Mid May and was till (and still am) recovering from that, I was terrified of falling again. However, me being me, my "point" of contacting my MD for steroid treatment hadn't been reached yet. That point for me in June came when Mark went out on an errand and I needed to call him. I picked up the phone and couldn't remember his cell. No biggie, it's programmed in my Blackberry. Only when I picked up my Blackberry I couldn't remember how to use it. For those who know me, you know I've been a "crackberry" user for about 6 years and am a "techno geek". THAT was the moment I knew I was in trouble with the MS. It wasn't misplacing the phones, forgetting to complete processes, constantly forgetting what I was in the middle of discussing during a conversation or even having trouble finding "words", (all of which I had been experiencing). It was not being able to remember how to call Mark on my Blackberry.

Having this experience was actually a real blessing though. Like the majority of MS patients, my number one fear of the disease has been the potential loss of mobility and independence. Not anymore. My number one fear changed in an instant. God, I prayed, PLEASE don't let this disease take my mind. It was as if God in his infinite wisdom chose to show me that he COULD allow me to keep mobility but allow me to lose cognitive skills. Which, for me, would be more difficult. THAT sent me to my MD. Mark of course went with me, as now it was clear something was VERY wrong. As I have said previously, I have a wonderful physician here. Dr. Susan Hall. She practices what I call "old fashioned" medicine. She actually pulls up a chair, sits, and will spend as much time as she needs talking and LISTENING. Mark was a very active participant in the conversation, as I couldn't remember enough of what had been going on to really give her accurate time lines. Of course, I was so much more fearful of the cognitive problems than the balance, but the balance was a big enough issue for the walker to be discussed for the first time.

This is where God amazes me. Honestly, if I had gone into Dr. Hall's office and she brought up the walker and the balance was the ONLY issue that I was having problems with. I would not have handled it well. Remember, loss of mobility for me was my worst fear. When the walker was discussed, I clearly remember saying, "Fine, let's just fix my brain". My instant new perspective became, "I'll still be mobile, I'll just get around a little differently, but I NEED my mind to function".

I started on Aricept right away and Steroids on June 26th (Insurance approval and home health coordination took 3-4 extra days. Insurance issues would require a completely separate blog)!

Symptoms don't immediately improve during or following steroid therapy as it takes time to see if the myelin sheaths will regenerate. About the time I WAS seeing improvement with my balance (I was using the walker part time and the cane the rest of the time) I started having blurred vision with my right eye. THAT was emotionally tough. It meant I would be doing another round of steroids less that a month after the previous round. However, vision issues are a firm "set point" for me, so I called Dr. Hall.

So, here I am infusing the last dose. A month after starting the Aricept my memory has just about returned to "normal" I still have isolated incidences of being challenged with losing the thread of a conversation or finding the right word, but I remember how to use my Blackberry! I now only use the walker in the morning or when I'm going to be out and about walking a lot. I don't know if I'll be able to get off the cane completely, time will tell, but that is no longer a concern at all. Now even using the walker doesn't bother me. Loss of mobility is no longer a fear. (Thank you God).

Each of use has challenges we much face in our lives, some seem to be challenged more than others. Be they health, financial, marital, job related etc. My challenges are no greater than yours, no more difficult, no more of a heartbreak at times. I do know, that there are three things that get me through my challenges. God and the absolute love and support of my family and friends. I am so incredibly blessed. I can't help but wonder about and pray for those who don't have ALL of those things. Especially faith. Life is tough enough to get through WITH faith. I can't imagine those trying to get through life without it!