Maybe I'm Just Lazy: One Woman's Journey Through MS and Life: Out of Hybernation CCSVI Rant

Tuesday, November 01, 2011

Out of Hybernation CCSVI Rant

I haven't done a lot of research about CCSVI but I have certainly been inundated with "testimonials" from believers in the MS community. I have to say that this is the first one that seems sane and balanced to me.

I'm glad that Montel Williams and others are getting relief from some of their symptoms with this procedure and I'm incredibly grateful that my symptoms are so minor that I would never consider surgery on my jugular vein...at least not yet. However, words like "miracle" and "liberation" scare the crap out of me and set off my bullshit meter.

For me, holistic is the way to go. Eastern medicine, western medicine, nutrition, meditation, yoga...whatever works. And if CCSVI works for you, that's fantastic but PLEASE don't tell everyone that it's the only answer and that they are fools for trying some of the other treatment options.

Let's keep supporting each other in our variety of approaches to living with MS and protecting each other from unscrupulous doctors who give false hope of "miracles" for the right price. Let's keep working/praying for a cure for MS.

4 comments:

Julie M. BakerNovember 1, 2011 at 8:47 PM
P.S. I thought, since I'm commenting on a specific treatment, I should tell you some specifics about what I do and don't do to treat my MS. I have seen improvement in my energy and even my vision since I gave up gluten about 6 months ago. This dietary change is in addition to giving up dairy 10 years ago, and limiting red meat, pork, and fried foods years after I was diagnosed in 07. I am not a neurologist or even a nutritionist so I will not advise you to make these changes. I will just tell you that it works for me. I also try to do yoga (I know, try is a lie) and power walk every day (that I actually follow through on most days).

In terms of what I DON'T do, I try to reduce stress and I also gave up my injectable disease modifying drug, Copaxone (without my neurologist's recommendation or even knowledge) last spring when I got tired of the injection site swelling and bruising (some of it permanent). This may seem crazy but I have a plan. I got my last MRI series a month ago and if there is no increased MS activity or lesions when my neurologist reads it at my December appointment, I will let the doctor know that I am not going back on the meds. And, if there IS increased activity, I will insist that we try one of the oral meds or even a weekly (instead of daily) injection.

How about you? How do you treat your MS?
ReplyDelete
Replies
LoriNovember 1, 2011 at 9:28 PM
I have taken the advise of my neurologist and I do the following:

1) Copaxone - but only every second day and I only shoot in my belly and hips.

2) 5,000 IU of vitamin D daily.

3) Walk every single day. Sometimes far sometimes short, but for at least 15 minutes.

4) I am learning to run. I go to learn to run classes weekly and attempt a Couchto5K like program three other days a week. I'm up to running as fast as I can for 2 minutes at a time now.

As a side note, my neurologist told me that there are only three things proven to help slow disability in people with MS:

Not smoking, high doses of vitamin D and daily moderate exercise. So that's what I do.
ReplyDelete
Replies
Julie M. BakerNovember 1, 2011 at 10:10 PM
Thanks, Lori, for sharing your treatment plan and reminding me about the Vitamin D! Lots of research shows that most people with MS have a Vitamin D deficiency. Like you, I take 5,000 mg per day and I don't smoke. In my case, because I'm a recovering alcoholic and addict, I don't drink or take recreational drugs, either.

I also meditate daily and consider myself a spiritual person (i.e., I believe in a power greater than myself).

I have also received Reiki treatments occasionally and learned to do self Reiki.
ReplyDelete
Replies
ValDecember 5, 2011 at 12:00 PM
Way behind on my blog-surfing - but I have been doing some nutritional research (on me, myself, & I) - of course I don't have MS but I DO have medullary thyroid carcinoma & what I think is a mild to moderate gluten hypersensitivity...
Even the modest changes I have made seem to be beneficial - & here's another vote for the power of yoga! My inconsistent practice is nonetheless very helpful.
ReplyDelete
Replies

Add comment

MS is Lazy!

I just read this on an MS support group site and it made me feel better about feeling "lazy."

When the myelin covering on the nerves is lost/disappears/whatever it does, the nerves don't conduct brain messages nearly as effectively. It's kind of like the nerves have to find new pathways for the messages from the brain. So the messages are much slower in reaching their destination and it takes more energy, trying to find the right paths. This made a lot of sense to me and helped my not feel so 'lazy'.

The Spoon Story

I would love to give the proper attribution for this story but I have no idea where I found it! I think it may have been posted to an MS community site.

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about MS. She came to doctors with me and she saw me walk with a cane. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity.

I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have MS”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.

So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with, which you wont know until you wake up. To answer your question we’ll start your day with twelve. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out the12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon.

I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If my shoulders and back hurt I wont be able to put on a bra. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons.

I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a virus comes, or a treatment reaction, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so dizzy, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it.

I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared” It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.

I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons."

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say that she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

Maybe I'm Just Lazy: One Woman's Journey Through MS and Life

Tuesday, November 01, 2011

Out of Hybernation CCSVI Rant

4 comments:

Sharing is Nice

Where are you?

MS Books and Related Titles

MS Blogs

The Facts of MS

Info About MS

Who Gets MS?

MS is Lazy!

Blog Archive

The Spoon Story

Maybe I'm Just Lazy: One Woman's Journey Through MS and Life

Tuesday, November 01, 2011

Out of Hybernation CCSVI Rant

4 comments:

Sharing is Nice

Subscribe

Where are you?

MS Books and Related Titles

MS Blogs

The Facts of MS

Info About MS

Who Gets MS?

MS is Lazy!

Blog Archive

The Spoon Story