Deciphering the Smoke Signals: New Study Reveals Cigarette Smoking May Speed MS Progression

My second article is hot off the virtual press!

http://www.healthline.com/health-news/ms-cigarette-smoking-may-speed-progression-of-multiple-sclerosis-051513

 In it I tackle smoking and recent study results regarding its effect on a person with multiple sclerosis. We've all known for a very long time that smoking is bad for us. I know first hand. I was a pack-a-day smoker for over 30 years. I only quit because I was terrified it would complicate things when I joined the TRANSFORMS trial back in 2007. The idea of "what if" plagued me and I figured I had the best shot at minimizing a negative outcome if I quit doing the one thing that was within my own control.

So on July 4th, 2007, I awoke for the first day in as long as I could remember and didn't start the day with the familiar comfort of a lung full of smoke. Instead, I pushed my way past the haze and the hurdles, the brain fog and the biting cravings, and made it through one day without succumbing to temptation.

It was no coincidence that I quit on the 4th of July. No, I wanted the country to celebrate my anniversary of quitting each year with a sky full of fireworks. No matter that they don't know me, nor would they even care. In my own mind, it's enough to believe it's a celebration of a turning point in my life.

Quitting smoking and joining the trial were the two best–and most health-transforming–things I have done in my life. Of course I tell my children that an even greater feat than quitting smoking would be to never have taken up the habit in the first place. But I'll take what I can get and hope the youngest keeps a level head and avoids curiosity, peer pressure, and the idiotic notion that "I can try it and not get hooked."

I noticed that I felt better. It wasn't right away, but over time. The hacking morning cough stopped. I could take a deep breath. I could smell even the most delicate of scents again. My taste buds exploded with excitement. It was especially nice to have my hair and clothing stay clean smelling.

During the TRANSFORMS study we had pulmonary function tests (PFT) to test our lung function since earlier studies of Fingolimod demonstrated a possibility of developing a slight asthma-like condition. I was both happy and relieved when I learned my lung function was normal. I felt like I had dodged a bullet. I was so glad I quit when I did.

I didn't use any smoking cessation techniques or tools unless you count those individually wrapped Dove Promises dark chocolate bars. I worked my way up to a pack a day of those bad boys. Between that and the sheer terror I felt going into the trial, they were enough to remind me of my goal of controlling my MS. To me, that was worth pushing through the cravings as they came at me. Taking them on one at a time and dealing with only the moment I was immediately facing.

It was the hardest thing I have ever done. I am proud to say I have never put even one single cigarette to my lips again (my secret tip for remaining a non-smoker).

I'm not writing this to be preachy. I'm not better than you because I don't smoke. I used to be a smoker and when you smoke, the most annoying person in the room is the recovered smoker. They want to foist their opinions and best intentions on you, figuring you never got the memo that it's bad for you, regardless of the Surgeon General's love note on the side of every pack. You'll quit when/if you are damn good and ready. I know that because I thought that.

All I am doing here is presenting some really interesting info in this article (which I'm sure you're going to rush right over and read, am I right?) about how MS is affected when you smoke.

Knowledge is power. I'm hoping anyone who has MS, smokes, and is miserable with lots of disease activity might consider the facts and conduct their own experiment. If you quit and start feeling better, let me know. I'd love to do a follow-up post.

Thanks for reading. By the way, my great readers boosted the Facebook "recommends" of my first article to nearly 400. I'm just fascinated by that and deeply appreciative.

So let's do it again! :)

http://www.healthline.com/health-news/ms-cigarette-smoking-may-speed-progression-of-multiple-sclerosis-051513

Weight Loss and My MS

Ever since I quit smoking in 2007 right before entering the TRANSFORMS clinical trial for Gilenya (Fingolimod), I have been (at least in my eyes) overweight. I gained probably 15 lbs. after quitting cigarettes. For the sake of full disclosure and honesty, I'll say I started out at 115 lb. and ended up at around 129-130 lb. Over the last few months of trying first one thing then another I had gotten down to 124 lb.

Now I know a lot of people who struggle with their weight will look at that and scoff, telling me I should be happy when I weighed 130 and that it's still "thin" compared to their own weight. While this may be true, one's own body image is a matter of perspective with one's own perception often distorted. I have always been thin all my life, so having any "muffin top" or extra padding in places not formerly occupied by fat is unnerving -- and uncomfortable -- to me.

I have noticed that just the addition of 15 lbs. has made a real difference in how my body responds to the residual MS symptoms I have always had since my very first, and most acute, MS attack way back in 1999. My left leg has always been weaker than my right, and my legs seem to tire faster when transporting the 3 seemingly permanent 5-pound-sacks-of-potatoes I've acquired since giving up the butts. Just getting myself up from a sitting position takes more effort.

Bending over to tie my shoes can leave me struggling and out of breath. I feel greater fatigue. And refusing to give up the "skinny" jeans, shoe-horning myself into pants meant for a younger, trimmer me, adds nothing to my comfort.

I can't afford new clothes and I'm tired of seeing myself staring back from what obviously must be a fun house mirror because NO WAY can that be my stomach, hips or thighs. So I'm doing something about it.

I am all about taking control of your health. I have spoken on that very topic many, many times. I think a person should be their own advocate, make changes for the better wherever they can, and enlist the help of others when they need to. So it's only natural that, while I'm preaching self-advocacy, I need to DO something about this body that's making me unhappy.

When I was a small child my mother took me to the doctor and asked "how can I fatten her up?" I was painfully thin, twig-like and appearing so fragile a good wind might snap me in two. The doctor, a man from eastern Europe, told my mother quite matter-of-factly, "Fat is not healthy." And that was that.

I remained thin into my adult life when I only broke into the triple digits after becoming pregnant at 98 lbs. with my first son. I ballooned up to 160 lb. at the peak of my pregnancy and then by all rights I should have whizzed around the room like a unknotted balloon the way I reverted to my near starting weight, stopping at 105 lbs. after giving birth.

Even though I had quit before during both of my pregnancies, I had resumed smoking once I was done breastfeeding as if only another's health were worth quitting for and mine was either immune to the documented effects of smoking or not worthy of protecting.

But everything changed when I read the Informed Consent. This is the big, thick, War & Peace size document that outlines all the possible things that can go wrong in a particular clinical trial, informing you of every side effect or adverse event that *might* pertain to the study medication as revealed during earlier testing. No matter whether it was at a higher dose, or given to a different group of patients with other health issues or not, they have to fully disclose anything that remotely resembles a possible side effect or adverse event.

That is to what the "informed" part of the Informed Consent refers. You only sign on the dotted line and agree to become a test subject if you have read and understand all the things they tell you about what they know thus far about the medication.

When I read that there was a possibility of a mild "asthma" like condition that occurred at much higher doses with not MS patients but rather kidney transplant patients in an unrelated study, I still worried that twenty years of smoking might place me at greater risk. I'm a hypochondriac after all. Worrying is my job.

So I put down the cigarettes on the 4th of July, 2007 and never picked them back up again. Cold Turkey. Just like that. Knowing that every year, on my anniversary, the whole country would celebrate my milestone with fireworks, I found the willpower (buried in sheer fear, it turns out) to give them up.

That's the beauty of smoking cessation: to stay quit, you just simply never put another cigarette to your lips.

I have discovered, much to my horror, that losing weight is MUCH harder. The same philosophy does not apply. I have to make conscious food decisions every waking minute of my day now that I am facing these potato sacks and trying to rid myself of them. How does one find the courage on a daily basis to do that?

I read the South Beach Diet book the same way I read science fiction: I got to the end and thought "Well, THAT ain't gonna happen."

I tried Slim Fast for a week but decided that wasn't a long term solution either. I needed to learn better eating habits and replace the old ones. Meal replacement shakes weren't the answer.

Then I decided to sign up for Weight Watchers. I'm only on week two and I don't get the whole Points Plus way of assessing foods, but whatever it means, I'm starting to lose weight finally. Plus, without even trying, I'm being tricked into eating healthier. Fruits and veggies, being "free" as they are worth 0 points, are now a major part of my daily intake.

I can't quite put my finger on it, exactly, but I'm sensing that the point system satiates that part of my brain usually occupied by shopping. Getting a free snack of raw baby carrots almost leaves me happy in the same way a BOGO sale does. I got something for free. Yay me!

And so I can see this working. I have a daily budget of points which I can dole out to myself however I like, plus extra points I can dip into during the week if necessary. I have only used up my daily points one time so far, and that day ended with me feeling bloated and uncomfortable anyhow, so it's not likely to happen again.

The only thing is, I signed up for the whole she-bang -- meetings and online tools. So far I have only used the tools (there's an app for that) and have not attended a meeting. I fear going to a meeting and being "judged" by those who think I have no business being there. I know that lots of people need to lose more than I do, and these meetings are their place to commiserate in safety among others who also need to lose an obvious amount.

I am scared they will give me looks that say "how dare you call yourself overweight!" or "How dare you insert yourself into our sanctuary, you obvious outsider!"

Just as fear keeps some overweight folks from doing things where they feel their appearance might matter, I'm feeling that same thing myself. So I won't attend a live meeting because I'm too self conscious.

After a week I have lost 2.5 lbs. and just that half-a-sack-of-potatoes feels so good to set down! I definitely feel a difference in the impact the weight has on my MS symptoms. My legs feel less burdened and tire less easily. I'm not napping all the afternoon away. Maybe it's got something to do with snacking on those fruits and veggies that keeps my sugar level steady, but I feel evenly energetic all day.

No marathon in my future, don't get me wrong. I feel as energetic as your average 50something woman, and that's fine with me.

I will continue to share what I think of Weight Watchers and how I feel my MS is impacted during this journey, but I really think weight loss, however minimal, can have a major impact on how your MS treats you, if you are starting out over weight. You don't realize how bad you feel until you start feeling better. Let's face it, if you have MS the last thing you want to do is lug around unnecessary extra bags of potatoes.

And that's just food for thought. Mmmmm foooooood....