Just Living
September 10, 2008
So, it’s been awhile since I’ve written. I guess I’ve been just living. Enamored with the ease of moving naturally, of walking through a crowd and just being one of them. Not anchored by braces and crutches and spasticity holding me firmly to the earth. I walk through stores, walk through the woods, walk to my seat in a restaurant, walk through the grocery store and no one, NO ONE stares at me wondering ‘what is wrong with her.’
I am just another person living in this world. That is the difference. When you look like everyone one else and move at their speed then you are one of them. Taken at face value as one of them. They cannot tell that something is wrong with me. They cannot tell how hard I fought to get here. They cannot see the pump inside me.
The other day, sitting in the waiting room of my physical therapists office, a man ‘walked in’. I use the verb walk and immediately you think of long strides, ease of movement, grace, swinging of arms, an almost involuntary muscle movement like a beating heart. Yet this man, in his forties, moved stiffed legged using two canes (not even lofstrand crutches) and each step draining his energy. My goodness, I thought that is how I must’ve looked. I understood this man in a moment. Feeling both grateful and guilty for where I stand now.
Seeing others struggle now, I feel like I must make the most of my well being. I don’t mean going off every day enjoying myself by immersing myself in all the activities I couldn’t do before. I mean helping others. That man, just watching him, made me realize how many other people have helped me. Without them I would not be in the position I am in right now. From my family and friends who wouldn’t let me give up, to doctors who care enough to keep practicing even though they can’t cure you, to past patients who forged new treatments, to strangers with kind words and actions, it is upon their shoulders I rode when I could no longer walk, move forward.
I feel I must make a commitment to help others make their life better so maybe they can enjoy just living too. I would really like to connect with others who have MS or other similar diseases. I know the importance of having supportive individuals helping you through tough times. I feel like a window of opportunity opened and I must seize it. As my son, who is currently taking Latin, says “Carpe diem, mom, carpe diem!”
A month later
September 2, 2008
Wow, I can’t believe a month has passed since my baclofen pump surgery. I continue to have the pump adjusted. It is a process like everything else in life. I go for weekly adjustments until we find the perfect dose. Meanwhile, life goes on.
I work with a physical therapist to help strengthen my legs and stretch out my muscles. This time there is light at the end of the tunnel. This is the third endeavor with the same pt. Bless her, she is extremely experienced in progressive ms, understands all that atypical ms encompasses and cares. Most of all she cares.
The last time I saw her, I was getting ready for the pump surgery-back in the beginning of June 2008. She tried to patch me up as best she could until the surgery, but was fighting an incredibly steep uphill battle. Finally conceding that despite her best effort I was losing ground. The best I could do was wait for the surgery, after which she would be of real help. The tears in her eyes as she had this heart to heart with me, touched me deeply. She cares about her patients. Her patients are real people struggling, fighting for better moments. The openness of her concession touched my heart so much that I really felt her pain. Felt and understood the helplessness of her words. She was in the business of making people better and I was the wrench caught in the cogs.
So, a month later with physical therapy script in hand, I sashayed into her office. With jaw dropped to the floor and tears in her eyes this physical therapist welcomed me back with open arms. Literally, open arms. Our smiles stretching from wall to wall. “Now this is something to celebrate! You have made my entire month by walking in here.” Her words touched my heart. She had helped me out so much in the past, I was glad to see her eager face again.
I barely notice the pump anymore. Once in a while when I move into a certain positions the pump bumps into my ribs. That I feel. Otherwise, not so much. We (hubby, son and I) nicknamed the pump ‘Tigger’ because it keeps me bouncing. Meanwhile, they (hubby and son) jokingly consider me a cyborg. I’ll gladly take that label.
I move so easily now. Still not as naturally as one should move, but so naturally that I can easily forget, if even for a moment, ms has changed my life. Have you ever been caught in a wind that starts at the top of the trees and blows threw you as it sweeps past. I was caught in one of those winds the other day. So what you say. Well I was actually able to throw out my arms and enjoy the sweep breeze because I didn’t have lofstrand crutches attached to my arms.
We ( I include myself before ms) take movement, simple, easy, graceful, natural movement for granted. The simple beauty of walking naturally, of moving with ease, without thinking about it, without mechanical assistance is something we should all take a moment and enjoy. Really, take a moment a walk, simply walk, take a few steps. Concentrate on just each step. Feel each foot fall, feel the ground, the floor underneath your feet. It is truly a wonderful sensation.
That is probably the greatest lesson I have learned this past month, these past few years living with ms: take each moment as it comes, enjoy every moment, see the simple beauty by keeping your eyes and your mind where your feet are. In this way you are always awake and aware enough to enjoy and live each moment. Good stuff. At least good enough for now.
Learning to Live with MS
August 25, 2008
Okay, so back to 2006. It was autumn 2006, a good year and a half had gone by before I was diagnosed with multiple sclerosis, primary progressive multiple sclerosis. Well, considering that there is no definitive test that diagnoses Multiple Sclerosis, my docs said that even though I look like primary progressive multiple sclerosis they would keep looking for definitive answers. Mainly because I was atypical. Atypical chronic progressive multiple sclerosis that looked just like ppms.
For me, it didn’t matter whether it was ppms, atypical ms, or anything else. At that time it seemed like we were all splitting hairs. I was spiraling downward out of control. Just throw me a life preserver. And they did via five day solu-medrol treatments every three months or so. I had three courses of these treatments.
Solu-medrol was great. I got such a rush from these five day treatments. It lasted for about 8-10 weeks before I noticed a backslide. Only the backslides felt more like avalanches. My symptoms reared their heads like a herd of angry lions waiting to pounce on an intruder. I didn’t just take a step backward, or even a giant step backward. I plummeted like snow during an avalanche.
So the docs would set me up with another solu-medrol round. I kinda felt like an addict. I would get this rush of energy, improvement of all my symptoms then the heavy crash. I even had the track marks considering solu-medrol was dispensed intravenously.
During the last dose, the docs informed me that they couldn’t continue to treat me with the steroids like this. Solu-medrol was a temporary fix until they could get another option approved by my insurance.
Another option, another longer lasting option. Hmmmmm. What could this be? Well, I knew already. The docs mentioned it before. CHEMO. Cytoxan. I needed a year of treatment without any sustainable results before insurance covered the expense of cytoxan.
I really am lucky to have these docs. They were able to keep me going for a year so that the insurance would cover the treatment. It seems modern medicine is really a chess game. A bureaucratic machine that plays with the lives of the sick and ill. Well its not only their lives but all of the people who surround the ill. This makes me angry everytime I think about it. I realize I can’t be helpful if I’m angry. So I need to focus on things I can do, things in my control. Anger is not really a helpful emotion.
In that year 2006 to 2007 I had to learn how to live with ms, how to live with my family while I have ms. This was not an easy task. I was battling my own demons, my thoughts about how I used to be and how I still wanted so desperately to be the person I once was. Each step along the way I seemed to have lost a bit more of me. My physical body was deteriorating while the meds were degrading my mental body.
And the biggest adjustment was that each and every day was different. I went to sleep one way and woke up not knowing how I would be that day. Stress, weather, progression of the disease worked against me. I think that this is the hardest part of ms. Don’t get me wrong, the severe spasticity, vertigo, fatigue, etc of ms is difficult to deal with. But you can deal with those issues once you stop fighting the expectations of what your life should be, should have been. All the ‘what ifs’ and ‘should’ves’ will kill you in the end.
The trick is learning to live with atypical chronic progressive multiple sclerosis that looks and acts just like primary progressive multiple sclerosis. I had to come to the realization that this is the way it is, this is my life as it is, face reality then embrace reality. No, I don’t mean be happy or glad or rejoice because I have ms. I mean realize that there still are many more good things in this world than not.
My husband stands by side, going through this disease with me. He sees me as the person he has always known. Not any less of a person. In fact he sees me as stronger and better than before ms. I get to watch my son grow up. WOW! If it stopped at just those two things that would be a life worth living, but the list goes on. I am able to appreciate and experience so much of this world that I can’t imagine not being where I am right now.
Ok, yes right now is not so bad with cytoxan behind me and a baclofen pump implanted inside me. But I couldn’t imagine being where I was six months ago, in the throes of chemo barely able to walk from my car to the infusion center and back again. Vomiting all the way home from the infusion center, and for days afterwards. It is the chance to be a better person, to help someone else out, to be. That’s the trick to learning to live with multiple sclerosis.
Hey, look ma no crutches!
August 22, 2008
Well, I am three and a half weeks post surgery. And look ma, no cruchtes! That is right. I shed my afos (ankle/foot orthotics) and forearm cructhes. I don’t even use a cane. I am walking normally.
I forgot that your feet actually go one foot in front of the other when you walk. For so long my feet went out to the side. In fact, my neuro-rehab doc described my walk as that of a Zombie: stiff legged and painfully slow. She even reminded me that I should have been in a wheelchair were it not for my stubbornness, and unyielding decision to stay upright until I couldn’t anymore. Giddy with excitement over the results, this doc had me walking for everyone. And I was glad to oblige.
I also found out that I am more of the exception than the norm with my baclofen pump results. Most people with mulitple sclerosis, whether primary progress, atypical ms, or your normal garden variety do not get the pump so early or have such great results.
Now, after so many months with this blog, I know what you’re thinking. Why? Why are my results, well quite frankly atypical? I asked the same question. I even asked why they don’t implant the pump on more people who are still mobile. They tend to have many people who are immobile, even with twisted limbs before a pump is implanted.
Again, relativity and everyone’s ms is different, comes into play. See, in regards to my spasticity I am described as looking more like a spinal cord injury patient. From my trunk down to my toes I have pretty equal severe spasticity. Even leg weakness was bilateral and pretty even; although, my right side is the weaker side but only slightly.
So, most of the time patients have only one side with severe spasticity. Because the pump dispenses lioresal (liquid baclofen) through a catheter implanted directly into the spinal canal, spasticity is relieved bilaterally. If one side is severely spastic and one side not so much then the result of the pump will be one side too weak to work properly and one side somewhat relieved. Not good results.
I guess in that case I am lucky. Because of the bilateral severity, I am reaping the wonderful relief that the baclofen pump promises. Imagine that, being so inhibited, being so spastic, being so affected actually works in my favor. Ironic, really. And I love irony.
The other major reason my docs don’t see such great results is that many people choose not to have the pump implanted. I would like to say I don’t understand why someone would choose not to have the pump implanted. But I can’t.
Back in February of this year, my neuro-rehab doc told me I needed the baclofen pump after botox injections were unsuccessful. As I explained somewhere else in this blog, botox is injected in isolated muscles to relieve spasticity. Due to insurance red tape, I needed to max out on oral baclofen AND have unsuccessful botox treatment before being covered for implantation of a baclofen pump.
In February 2008 I had my botox follow-up. The botox only relieved my calf muscles to the detriment of the rest of my leg and torso muscles. I went into that appointment in severe pain because the rest of my spastic muscles were trying to compensate for the now less spastic calf muscles. Basically, my whole gait was thrown off (again! -first time of course is because of MS) creating a great deal of strain on my legs and lower back.
Yet, I still said “NO!” to the pump. I wanted to try botox once more. So, May 2008 was the target date for the next botox injection. Meanwhile, I was sent to physical therapy. I spoke with hubby, family, and friends. All said, “TAKE THE PUMP!” Oh, no. I was too young for such a permanent, drastic move. My physical therapist, wonderful woman who is blunt. Which I really like. Give it to me straight. She said “If you got worse after the first botox treatment, what makes you think the second one will help?” Great question, don’t you think. I had no answer for her. I had to admit that botox wasn’t going to work.
Left with no other option, no other feasible, reasonable, sane option, I informed my neuro-rehab doc in May 2008, that I did indeed want the baclofen pump. Three months later and I am a different looking person.
As my doc says, “You don’t even look like anything is wrong!” Good stuff really. I am even getting used to having this baclofen pump in my side. I am beginning to think of it as my little ticker-it’s what keeps me going physically. Well that and ten months of chemo (Cytoxan). Hubby, son, friends and family keep me going psychologically.
Atypical Multiple Sclerosis 