Archive for May, 2012


Should Be Enough

“If we believe we need to create massive change in order to experience joy, we will inevitably feel a sense of restlessness.”- Lori Deschene

I have physical therapy once a week. There is always a variety of patients represented at different stages of their disease processes. Including those worse off than me. Today I found myself slightly down. Which is unusual because going to physical therapy is the highlight of my week. But as my therapist was assessing me for the new device I mentioned in a previous post, I got a chance to see my progress or lack there of in treatment. I felt a bit defeated because simple walking seemed like a distant dream. Just out of reach yet so far away. It occurred to me in that instant that I’m never gonna be like I was. I’m never gonna walk, I thought to myself.

Immediately I was filled with shame. Because right there, in my midst, were women and men that would love to trade places with me. I’m not paralyzed. My vision is functional. I have full use of both my arms and hands. I have a dynamite support system. This should be enough. I guess sometimes its not. I selfishly want more.

We always want what we don’t have. Never stopping to appreciate our blessings. I’m suppose to hear from my insurance company about that new technology (the Bioness) soon. Maybe too I’m just nervous it won’t live up to my dreams or my insurance company won’t cover it.

MS is suffocating me. I in turn lash out at those around me. I’m noticing that when I get tired my good leg starts dragging too! When will this whirlwind stop? But what I need to appreciate is that even if I could walk that probably won’t be the answer to all my needs. There’s no quick fix for me.

But boy do I hope this new device will at least patch me up!


Work In Progress

For as long as I can remember I’ve been intrigued by the self-help genre. It started when I was younger with diet and exercise. Now it’s years later and I have delved into just about everything under the sun. I guess I’ve always been trying to “fix” myself. This started way before the dawn of Multiple Sclerosis. It’s hard to believe but I find that kind of comforting.

I’ve looked for help from Jesus to Dr. Phil to Buddha and everyone in between. My family kindly makes fun of this. I use to literally copy chapters out of the newest book I was reading and mail them to my sister. I guess that’s why she avoids checking her mail to this day. Or is that a bit self absorbed on my part???? As a matter of fact, I just I sent a Buddhist email to my mother. Some habits die hard. Something is gonna have to give or I may just alienate my entire family!

Anyway, as I was reading my latest guru they suggested accepting or welcoming each moment as it comes. As a matter of fact, they even boast considering misfortune as a blessing. Even in the context of M.S.? As I continued reading it said that ALL adversity should be considered. So, I guess the answer is yes. Imagine that? Life just goes on…no matter what’s happening with us inside. So, in the midst of my unpredictable debilitating chronic progressive disease or maybe even your situation, life doesn’t acknowledge either one of them. That doesn’t seem fair! Can I at least get the benefit of the doubt?

I guess the best thing we can do is work around our problems and move on however we can.

Is that it? Because through all my reading I certainly don’t know.

Like they say, “I’m a work in progress.”


I’m So Excited

I’m so excited!!!

I recently went through a free trial run of a technology that could help me with walking! Albeit, at this point it’s gonna have to be walking with a walker. I have less balance and stamina then I’ve had in the past. These days though walking around my apartment would be welcomed, so boy am I hopeful! Some would tell me to “calm down”(I hear that a lot more than I would like).

I know it’s risky to bet all my chips on black. I’ve been doing it for years. One of two things happen. Either I get what I want or I end up sobbing in the bathroom. The latter seeming to be far too common.

Paying for this latest treatment seems to be the question now. Insurance or Medicare being the obvious answer, but I heard Medicare doesn’t cover it and my other insurance already denied the claim last year. It’s that I finally got a chance to actually try it out. I just need to work on my balance issues. I wonder if physical therapy can address that? I guess first I need to concentrate on one thing at a time.

You see I always stumble on these things that I think will be absolutely life changing. The answer to all my problems. I get so amped up. So ready to dive in full force. I’ve been like this even before Multiple Sclerosis was in the picture. But at least I get it honestly from my father. Even my sister has it too!

The product representative said the MS Society offers grants to help pay for this walk technology. Before I apply for aid I need to get a prescription from my doctor and ask his opinion on the device.

Meanwhile, please forgive me if I seem anxious. It’s because, I’m so excited!!!


Fooled Again

I just recently came down off my whole diet kick since my Miracle Diets post. My newfound nutritional regime lasted all of twelve days! The routine just wasn’t very practical for my lifestyle or energy levels. Then on top of that I attended a Brain Fair that fell under the conventional medical paradigm. This means they were pushing exactly the opposite of what I was trying to do. Which was to fight M.S. with nutrition instead of medication. Well, I guess you know the doctors said at best, “It can’t hurt!”

The doctor’s opinions kind of rained on my parade but I know they wouldn’t be expected to say much else. It doesn’t matter because for me the Wahls diet turned out to be a bust. It’s fundamentally based on eliminating carbohydrates and dairy, while eating a plethora of organic fruits and vegetables. Though this particular diet may have boosted the immune system of many of its followers I had to painfully let go of that dream. It hurt so much because for a minute it had shed a little hope on my situation and I was excited. I thought I had found the next best thing to a cure!

I’m not blaming the diet for this but I haven’t been feeling too fit this week. It’s probably due to my subsequent depression (Funk). Well, that plus the fact that I have a bladder infection also known as your common UTI (urinary tract infection). I’ve talked before about how they negatively affect me. So excuse me if I lack luster.

When I first learned about the Wahls diet and heard Dr. Terry Wahls’ story I felt empowered and full of hope. I actually went to Whole Foods and spent a crazy amount of money on a refrigerator full of foods that I may not even eat, but that’s the way I normally do things. I get all excited and jump in head first without considering much else.

At least this time nobody got hurt! That is, except my pocket.


Common Ground

Living this way is certainly different than anything I’ve experienced before! This way meaning as a member of the chronically ill. I mentioned before that for the first 8 years of my MS journey the disease was relatively incognito. I was able to straddle two worlds. One is the land of the healthy and the other the home of the ill. Although now I often wonder if trying to appear healthy as long as I did actually stressed my body into the condition that I’m in now. You know working too much and too long. Exercising, getting overheated, and pushing myself. But this type of thinking gets me nowhere!

My problem is that I am no longer able to fake it. I used to secretly blend into both worlds. Now when you see me, you’ll immediately know that something is going on. I am still trying to learn how to function in my new terrain where all my flaws are out front and open.

Recently I was getting ready to meet some friends for lunch and it dawned on me that I wasn’t sure if the venue was handicap accessible. You would think that most places are accessible since we’re in 2012! But in New Orleans, Louisiana think again! Often businesses can get away with not making the required accommodations under the shield of being “historic” and unable to change.

Usually I just take a drive by and check out the entrance beforehand. It always makes me a little mad because I shouldn’t have to. This is why I feel as if I’m living in one world but begging for acceptance into another. For this reason I do a lot of advocacy work. I post a lot of it on this site and across the web. Maybe one day more people will know about Multiple Sclerosis, maybe they won’t. I just have to believe that by just having it, it doesn’t diminish who I am. If I cease to seek the difference between myself and others, I’m pretty sure I’d be a lot better off.

Because, after all is said and done I bet all members of each world have a lot more in common than we think!