Good and Bad
February 2, 2011
So I have been feeling pretty good lately. I’m not running any races, well I’m not running. I have enough daily energy to do what needs to get done. Essentially, I operate on a low level. That is good. I am happy with that. I can make a little life for myself.
The bad. Well, I’ve never been satisfied with slowing down or following rules. Most of the time this rebellious spirit serves me well. But, when it comes to conserving my energy and keeping my energy at a good level the rebel in me is not serving me well.
Rebellious Spirit, Spirit of the Soul, does help with overcoming the depression, the “woe is me” feeling that a chronic illness brings. The spirit enables you to live happily, find a way to make your life, see the joy in life despite or maybe even because of your troubles.
When this disease, when atypical ms progresses again I will be facing another round of chemo, cytoxan. If you have read any this blog you know that I have a love hate relationship with cytoxan. Chemo really helped me, but I was sick; sick through the process. I want to keep myself as good, as healthy as I can.
The rebel me needs to ssllooww down if that is going to happen. In analyzing why I don’t slow down, I’ve come up the answer. I think. I want to live life, experience all life has to offer. I don’t want to follow the speed limit and park between the lines when I die. I want drive 100 mph taking the backroads finally careening into a skid as I stop at the Pearly Gates jumping out of my convertible tossing St. Peter my keys. You get the idea.
The spirit is willing but the body isn’t able. So I hope my spirit finds creative ways to live life without punishing my atypical ms ridden body.
We’ll see how it goes.
The One Thing
January 2, 2011
The secret to success is the one thing. This isn’t a new idea, but an effective reminder for me. The one thing for me means the one focus. The one thing I focus on to get me through whether going through steroids, cytoxan, or daily living with MS.
For me, the one thing is my son. I love to be outdoors walking in the woods, shooting hoops, etc. with my son. I have a routine, a daily routine I perform from the time my eyes open in the morning before I even try to get out of bed. Ok, so I press the snooze button a few hundred times before I start this routine. OR, you could say the snooze button is part of my routine. I hate alarm clocks.
As I shake the sleep from my head, my eyes, my body I repeat to myself “this is my situation, I cannot change that. I am grateful for my life especially my son. I picture my son and I walking through the woods with our dog, or shooting hoops, or talking, even laughing. Remembering my blessings, realizing how much I still have in my life puts into perspective my atypical MS. This process also frames my thoughts, feelings, and ideas in a positive light making life a bit easier.
When I was going through cytoxan (chemo) I performed this same routine while sitting in the chair in the infusion center. I imagined the cytoxan as an elixir that repaired the damage done by MS. I imagined this elixir giving me the ability to “play” with my son again. To hike a mountain, climb the rocks on the coast of Maine, ride the ocean waves. Closing my eyes and really imagining cytoxan as an elixir pouring into my veins seeking out damage and repairing it. I watched it cover my damaged nerve connections and watched as it repaired these connections.
Yes, I know it sounds a bit weird and different. But, it works. I believe I responded so well to the cytoxan and baclofen pump because of this attitude. Somehow this vision made my mind strong so that it was unwavering during the worst times. Having a strong, focused mind really helps when the hurricane hits. Because as we all know the hurricane always hits. No one is left unscathed in this life, that is just life. You may hear some people complaining about a cold, about a store being out of their favorite ice cream, or not getting a raise in a few years when they are paid handsomely for their effort. As you sit there listening you may say, “Hey, I’ll take your troubles over mine.” Yet we don’t. I like to say, “The devil you do know is better than the devil you don’t know.” Kind of the like “The Grass is always greener….”. When you are talking about MS, atypical MS, ppms, “devil” is a much better word.
So, I guess I am saying deal with the issues you have because they are yours and find a way to happiness one thing at a time. I truly think that is the only to deal with troubles. We all have them, it is how we use those troubles that determine our happiness.
Dancing
September 29, 2010
It is funny that after a few years, okay 5 or more, with MS you get used to the pace of life. For me life has slowed down, dramatically. I am on a completely different schedule than I was before; completely different than most ‘healthy people’ I would guess. Just when I think, hey I am doing alright, life isn’t quite as different as I thought-bang it happens. You are made acutely aware of just how much MS has impacted your life.
I’ll give you a ‘for instance’. I feel better, I have more energy, I walk better, I have more endurance, etc. You know, you’re living it. I get an invitation to a 40th birthday party, a surprise birthday bash, for a friend who lives in a nearby state, a couple of hour drive. Immediately I think, ‘yes, I will attend.’ Actually, it was more like YIPEE! I’ll go. I can’t wait to go out again. After all the party was at a rented hall with a live band for an all night party. Just the type of party I lived for before MS.
I knew better than to drive down just in time for the party. I mean I still have MS, I need some rest time before the big event. So, I drove with hubby in the afternoon. We checked into a nearby hotel and I promptly took a nap. I wanted to conserve as much energy as I could. Right about now, I realized that I wasn’t quite as good as I thought. A two hour drive for a 40th birthday bash really shouldn’t be an all day event. Most people would hop in their car two and half hours before the party. I planned the trip, the drive, the hotel.
Ok, well I just need to plan a bit more now. No big deal. Right. Maybe if I keep writing it and you keep reading it, it will be true. Life does not work that way.
So evening sets and we head off to the bash–7:30pm. here is where I am a bit upset. I figured the birthday boy would be arriving 7:45 or 8pm the latest. No, no, no. The person throwing the party told everyone to be there an hour early. And the band was supposed to start playing at 9pm. I just lost an hour and half. There is a big difference between me at 7:30pm and me at 9pm. At 7:30pm I can talk, laugh, maybe even slow dance. At 9pm I look like I have had a few too many suds and shooters. Standing around for an hour or so, I began to wonder how everyone else would fair. I mean could all of these other people stay up so late. No that is not a joke. I forget that I am not the norm, I am not the poster child for late 30’s and early 40’s people.
Once the yelling of surprise was over and the band began playing I was amazed. Amazed that most people had energy to dance. And dance. And dance. And dance. They walked around with their drinks, they talked-sometimes having multiple conversations at once, they danced. At 10:30pm my husband escorted (read: held onto me so I didn’t stumble into a wall or a person) from the party to our car and into our hotel room.
When we left it seemed the party was only beginning to wind up. Like the best was yet to be. Wait, let me say that again. LIKE THE BEST WAS YET TO BE after 10:30pm. WOW!
Needless to say my head it the pillow and I was asleep. We drove home the next day. I was silent. How could I be so accustomed to MS that I thought I was going to be able to not just survive a late night party, but participate.
My life has slowed down. I am on a different schedule than most people. But I like it that way. And that is good because I didn’t choose it and I can’t change it. Maybe I can’t dance at 9pm but life is more than dancing.
Was it worth it?
May 20, 2010
Recently, on my Cytoxan post under the category of Chemo a comment was posted asking if it was worth it in the end. Cytoxan is a chemotherapy treatment for PPMS(other diseases as well) . As you all know Primary Progressive Multiple Sclerosis (PPMS) has few treatment options. Of course when I say “treament” I am referring to disease modifying drugs. Symptom meds are abundant for all types of MS.
My treatment plan called for twelve treatments-once a month for a year. Essentially, I gave a year to this drug in hopes for three to five or more good years. I am going on two years, but I have noticed a small slide downward recently. After some steroids and other med adjustments I am feeling strong again. Yes, I was somewhat disappointed that after only a year and half, the disease is rearing it ugly head. But even with the minor setback I am still much better, feeling stronger than before the cytoxan.
So the question posed is “Was it worth it in the end?” YES!!!! I have learned and continue to learn many lessons thanks to PPMS. One important lesson learned that I cannot stress enough is when dealing with a disease that has no way to positively be diagnosed, nor treatment options of any guarantee than the idea of popping an aspirin and being done with it are OVER! The more difficult a disease the more difficult your treatment options. That is a fact that must be accepted. Once accepted than the idea of a year of cytoxan is at least an option.
Don’t get me wrong. I am not advocating everyone rush to their doc’s office and demand cytoxan. It is an individual choice offered at a time when there are no other choices but to succumb to the disease. Succumbing to the disease was and is not an option for me. Think of the place you must be for the a year of monthly chemo treatments as the preferable option. And the caveat is no guarantee that in the end you will be any better than before you began. Of course, that is not entirely true as cytoxan has been used for twenty or more years in combating PPMS. So there is a history to hang your hope upon.
If you find the treatment you are currently using is worse than the disease, and you are not feeling any better than perhaps that treatment is not for you. On different ms forums and meetings, I hear people talking about going off this med or that med for a respite. They find they need a rest from either dmd’s(disease modifying drugs) or from symptom meds. I have never found this to be the case. I want to scream, “MAYBE YOU AREN”T AS BAD AS YOU THINK!” If you can go off your meds and feel better than on them that should be a wake-up call.
Now, I know what you all are thinking. When I went through a year of chemo there must have been times when I wanted to stop, to take a break. No. No there wasn’t. I had friends and family telling me I should stop because I felt sick and weak from the chemo. But, I knew going into the treatment it would be difficult and the payoff would come after I was done the treatment. I knew that because me docs explained that to me. Also, I did notice improvement along the way. I was becoming stronger both in instant strength and endurance even though the chemo weakened me and made my stomach nauseous all month long.
The second lesson learned from PPMS is that a strong mind is necessary to successfully deal with this disease. Atypical acute PPMS is not for the weak minded. I slipped earlier this year in giving in to mental weakness. After years of dealing with this disease as every day is a fight to feel good. I found my strength again. I find my strength in enjoying my family, my friends, watching a bird, admiring a wildflower, enjoying the moment I am in as that is all I have. There are no guarantees and no expectations so all I have to do is enjoy this moment. Thanks to cytoxan, the baclofen pump, past PPMS patients, docs, family, friends, etc. (you get the idea, we are never alone, we are connected to everyone and everything) I can enjoy this moment as it is worth it in the end.
Atypical Multiple Sclerosis 