Category Archives: MS

MS Symptom I wouldn’t mind

I do not take symptoms of disease lightly so please don’t misunderstand the following.

If I HAD to pick a symptom for myself it would be the one I read about today on Julie’s Blog. It’s called  “foreign accent syndrome”. Evidently, you still speak your native language but with a new accent.

This is a true story! While a little unsettling, I think it would be a blast to wake up one morning and have a perfect Australian accent!

Now, I don’t know if the symptom is so cool that you choose what accent you get, but if you could, what would it be?

Eat Less

If you know me or this blog, you know I think that food and weight can dramatically impact MS or any chronic health issue. If the truth be told, I feel like I have struggled with weight issues since I was twelve or maybe even younger.  I doubt that is unlike many of you, especially women.

I have counted points, ate only protein, eliminated carbs, counted points again, exercised too much, exercised too little, taken diet pills (way back when), binged, starved and anything else to lose weight and then gain it right back again. I have lost and gained the same twenty pounds for over twenty years.

Since my MS diagnosis, I started to look at food and weight very differently. It became about health instead of skinny jeans. I am almost rid of that pesky twenty pounds again and hope to approach the rest of my life much differently in terms of maintaining a healthy weight.

When I read this, it really made sense….

“Think of the insignificant gimmicks that you’ve been told will help you drop
pounds:

  • Eat breakfast every single day: If you don’t, your body goes into ’starvation mode’.
  • Drink Coffee to speed up your metabolism
  • Drink 12 glasses of cold water every day
  • Eat protein for lunch
  • Sip Green Tea all day
  • Take your Fish Oil Pills every day.

In reality NONE of these things are going to result in significant or long lasting weight loss results.

Each one is either a misuse of scientific fact (confusing an association with causation), is an exaggeration (the ‘metabolism boosting’ effects of green tea or caffeine) or is simply repeating common myths as facts (protein for lunch).

And while the health marketers that push these info tid-bits may or may not mean well, convincing you to focus on the minor and mostly irrelevant tasks can not only prevent you from losing weight, it can also affect your health.

Successfully losing weight seems to be one of the most difficult life-problems to solve.

Yet it can be solved with one of the easiest solutions: Eating less.”

Often overlooked, but so obvious.

It is time for a cure for Multiple Sclerosis

Natural history data suggests that after ten years, 50% of untreated patients diagnosed with relapsing remitting Multiple Sclerosis will be categorized with secondary progressive Multiple Sclerosis. After 25 years, 95% will make the switch. People with MS are untreated for a variety of reasons. The reasons range from personal choice to treat the disease holistically and the fact that MS drugs can often be cost prohibitive, even with health insurance to the reality that MS drugs are not always effective or the side effects can be impossible to tolerate.

Ten years or twenty five years does not feel that far away. Just looking at the last 5 years, I know I will not be ready for my MS to progress anytime soon.

5 years ago I was not:

married

blogging

selling my photography

raising a teenager

knowingly living with MS

a homeowner

growing my own veggies

cycling

paddle surfing

in love with Yoga

planning to move to Mexico

launching a new website

donating $1,000,000 to research

thinking about where I would be five years from now….

We have something to offer the world in the next 10 years and the next 25 years. We cannot continue to rely on current MS therapies for long term success. There are too many variables and too many MS patients that need another alternative. We need a CURE for MS.

Newly Diagnosed with Multiple Sclerosis?

Have you or someone you loved been recently diagnosed with Multiple Sclerosis?

Do you remember when you or a loved one was diagnosed?

While my diagnosis was just over three years ago, I remember the day clearly, the events leading up to it and the months afterwards trying to figure out how I was going to be healthy with Multiple Sclerosis.  I read books, talked to MS patients and medical experts and I searched the Web for other MS stories.

I will be featuring a resource page on my new website and want to include powerful books, websites and other things that helped you through your initial diagnosis and continue to help on your journey with MS.

What do you recommend?

Word of the day

When you receive an MS diagnosis, your doctor should also give you a special MS dictionary. When I was diagnosed, and for weeks and months following, I heard words that had no meaning to me. Some of them, I couldn’t even spell. Words like Myelin, Sclerosis, Interferon, methylprednisolone and cerebrospinal. There are more, but now after three years, I have become very familiar with words that are big and hard to spell, hard to pronounce and often hard to swallow.

This week, I found a new word (to me)….Leukapheresis. Here is a quick definition: Leukapheresis is a laboratory procedure in which white blood cells are separated from a sample of blood. This may be done to decrease a very high white blood cell count in individuals with cancer (leukemia) or to remove white blood cells for transfusion. (read more HERE)

The interesting thing is not that I found the word but in what context I found the word. There is a study going on in Seattle where they are using Leukapheresis in a study to reset the immune system in MS patients. From what I can gather, this has been studied before even as far back as 1999 (and maybe earlier). http://clinicaltrials.gov/ct2/show/NCT00040482 details a study but no study results are listed. (not helpful).

What might be more helpful is to follow a patient who is currently taking part in the Leukapheresis study. You can do that here: http://mymsjournal.blogspot.com/

27 Down

I had my 27th Tysabri infusion on Wednesday.  I typically have my infusions in the morning and then take the afternoon off and go to sleep early.  I typically wake up feeling either ready to go or almost ready to go!

This past infusion, I was scheduled for late afternoon. I didn’t get home until after 6pm. When I woke up Thursday, I was draaggggging! I need more recovery time from the infusion and will aim to always have a morning appointment.

I was looking through a journal that I kept when I was first diagnosed and taking Rebif. I am sure my blog entries from that time are similar but wow, it was rough! While I tried to stay upbeat, the side effects that I experienced made it tough.

Some of the things I said:

“Rebif Sucks – Enough said!”

“I felt too tired to go for a walk”

“MS is here today, Tingly face and right arm are an annoying reminder”

“With a Rebif hangover, the hike was really hard”

“Headache and Neck Pain kept me out of work most of the day”

“I am shaking inside”

“Anti – Nausea Meds are kicking in”

“I feel drugged”

“I want to disappear and forget about everything. Forget about a positive attitude, forget about fighting, forget that my neck hurts, forget that my head hurts, forget I am tired, forget that there is a needle in my arm”

In between all of those observations were things like:

“I had a great massage today”

“So glad the weekend is here”

“Went to a football game, it was a blast”

“Getting up early tomorrow to ride”

“Had a great early morning walk with Mark, Bailey and Guinness”

“I am scared but will fight.”

“I will find a way to be healthy and strong so I can raise her to be healthy and strong”

“Tysabri is the answer if I don’t want to be sick anymore” – Sept. 15th 2006

“I am fully responsible for my own great health. My daily habits create my great health”

“I feel amazing and hopeful”

While I don’t have to live with the horrible side effects of Interferons anymore, I do sometimes have bad days or a bad attitude.

The good stuff far outweighs the bad….then and now.

Great day

After a great day of cycling, yoga, relaxing by a mountainside pool and veggie sandwiches, I am sooooooooooooo relaxed. I could take a nap but feel too good to go to sleep.

I am spending the rest of the weekend putting together ideas for my new photography collection and really looking forward to it. Sign up on my Facebook page to see the new images. Just click here and then click “Become a fan”.