Friday, September 13, 2013

TECFIDERA NEWS: My memory is improving as is some of my pain troubles & for the 1st time in 16 years I'm remembering dreams!"


Life is much better without having to do those stupid intramuscular injections!

I have now been on Tecfidera for a month. In about 1.5 weeks I will have been on the full dose for a month.

My memory is improving as is some of my pain troubles and for the first time in almost 16 years, I'm remembering dreams!

It was SO wonderful bringing my "leftover" syringes to a local pharmacy (along with 2 sharps boxes) and telling them I didn't need any of it anymore since I wouldn't be injecting.

I'm still having some 'minor' MS issues (I THINK leftover from not having any medication but who knows - they say it takes 2 to 3 months to feel the "full" benefits of Tecfidera).

So far all is going well other than my fatigue is out of control.

Tuesday, September 3, 2013

Today is day 5 on the "full dose" (240mg) I THINK MY MEMORY IS SHOWING SIGNS OF IMPROVEMENT! The numbness & pain my hands has subsided quite a bit, my "migraine headache" this morning went away very quickly


Today is day 5 on the "full dose Tecfidera" (240mg so far) am having no side effects and it's AWESOME (a little tired of peanut butter but LOVE not losing my weekends. I can't wait to fully get over the Avonex withdrawal and waking up)! The numbness and pain my hands has subsided quite a bit, my "migraine headache" this morning went away very quickly and I THINK my memory is showing signs of improvement (feeling "cautiously optimistic").

LESSON learned with Tecfidera (today is day 5): peanut butter is something I absolutely HAVE to eat with these pills. I had sunflower butter last night instead. It didn't work like the PB does and man oh man those "upper GI problems" were SO uncomfortable (nausea and belly discomfort to the "nth degree" - I have learned my lesson)!


Sunday, August 25, 2013

THE NUMBNESS & PAIN IN MY HANDS HAVE IMPROVED AFTER ONLY 8 DAYS OF MY BEING ON TECFIDERA

Yvonne Decellis, Columnist, MSnewsChannel.com
Read all 8 of my articles: click my photo in left Column

I just wanted to give you another Tecfidera update (sorry if I am writing in too fast and too frequently with these updates. I just want to be sure to keep you posted as to the changes as I notice them and/or have them pointed out to me.)

I used to have major issues and/or problems with numbness  and pain in my hands as a residual side effect from one of the worst exacerbations I have ever had (in 1998). During this attack, my left hand and arm went almost completely numb (and I am left handed). I eventually lost a lot of feeling in both hands and after getting over the attack (with the help of seven 6-hour Immunoglobulin drips) I lost a significant amount of feeling in both hands, particularly in the left. All I have (or HAD) been feeling in my hands is a combination of numbness and pain. Tecfidera makes me almost as happy as this:

Thursday, August 15, 2013

My Column today is a chapter from my upcoming book: "IT'S NOT AS BAD AS IT SOUNDS: My life with MS & Fibro"

 
Yvonne Decellis, Columnist, MSnewsChannel.com

My exacerbations & experiences

What is it like to have Multiple Sclerosis and Fibromyalgia (in other words, how will it effect a person physically)?

When I think of topics to add to this writing, I try to remember what things I wanted information on when I first got my MS diagnosis. Even though every patient is different, and even though medications affect different patients in different ways, I thought that reading about what I go through may be helpful.

Saturday, August 10, 2013

HERE'S MY ADVICE TO ALL FRIENDS & FAMILY OF PEOPLE WHO HAVE INVISIBLE ILLNESSES LIKE MY MS!

Yvonne Decelis, Columnist, MSnewsChannel.com
I just want to state as a side note to all friends, family members and loved ones of people who have these “invisible” illnesses: whether you can see something is wrong with us or not is not what matters. What is relevant is that you are someone we should be able to depend on and having you call us a liar, or lazy, or any of the other horrible things that you may want to label us is incredibly unfair and hurtful.

How would you feel if someone did something like that to you? Is it
that hard for you to attempt to empathize with us? It should not be! Just because you cannot see what is happening does not mean it is not! If you are married to someone with an invisible illness please do not forget the vow you made to love your partner “in sickness and in health.” You made a commitment and you should stand by it.
There are support groups for caregivers to people with these medical conditions. I am not trying to heap a bunch of blame on you but please understand that I have heard horror stories about parents, siblings, and/or partners who were abusive and/or unwilling to try to learn what they were doing (or not doing) wrong. I know you did not ask to be “saddled” with someone with a disability but we did not ask to be sick either.

Saturday, July 27, 2013

This is a section from a book (soon to be published) I have written called "It's Not as Bad as it Sounds (my life with MS and Fibro)"

(Yvonne Decelis, Columnist, MS News Channel)
I hope you enjoy this section (and I will definitely put an update in my column when the book comes out.) HERE'S CHAPTER ONE:

The things I’m grateful forNow I want to take some time to discuss some of the “perks” that I have discovered since being diagnosed (first with Multiple Sclerosis and then with Fibromyalgia.) I know that may be a somewhat irritating sentence to read, but good things have come out of this and I would be remiss if I didn’t mention any of them.

I want to start by writing about an online support group for people who have MS that I have found to be incredibly helpful. It is called “Stan’s Angels”. The URL for the group is http://www.stansangels.com/.   The person who started it is Stan Swartz and I was fortunate enough to join when he was putting the support group together so he and I have become good friends. If I had not discovered his web page, I honestly do not think I would have come out of the diagnosis with the healthy attitude and/or outlook I have now.

Wednesday, July 17, 2013

Here's what is it like to have Multiple Sclerosis & Fibromyalgia and how it effects me physically

(Yvonne Decellis, Columnist, MS News Channel)
This is from my upcoming book, It Isn't as Bad as it Sounds (my life with MS & Fibro) My exacerbations (MS attacks/flare-ups, etc.)

What is it like to have Multiple Sclerosis and Fibromyalgia (in other words, how will it effect me physically?)


When I think of topics to add to this writing, I try to remember what things I wanted information on when I first got my MS diagnosis. Even though every patient is different, and even though medications affect different patients in different ways, I thought that reading about what I go through may be helpful. I

Thursday, July 11, 2013

My secret to pain free Avonex shots plus my secret to coping with Avonex side effects


I have been on Avonex since 1998. I have found that the way (for me) to make the shots as "pain free" as I can is to use something like Prilocaine/Lidocaine cream (or Emla) to numb the top layer of skin out.

Here's how I cope with the side effects of Avonex:
I really hope this helps you (I can not guarantee it will since different things work differently for different people)...

I spoke to a nurse about early March of 2010 and when I complained of how lousy the Avonex made me feel (I've been using Avonex since 1996 and it always gave me flu like symptoms for 2 to 3 days) she recommended eating fresh (unprocessed/uncanned/unheated) pineapple... before (about an hour to ninety minutes BEFORE) I inject because it has an enzyme in it (Bromelain) that helps lessen the side effects significantly, particularly if I nap after injecting. FYI: It is a natural anti- inflammatory. She also told me it had to be fresh (but I did have one MSer tell me she used canned and felt it still helped. Then again another told me the exact opposite). I find that the more pineapple I eat, the more it helps.

My Neuro recently told me she has been telling her patients about this and that she's been getting good feedback back (for ALL Interferons, NOT just for Avonex).

NOTE: she also emphasized drinking LOTS of water the day of and after the shot

UPDATE: sometimes the pineapple works fine by itself, other times it isn't as effective so I have started taking Natural Papaya & Pineapple Enzyme chewable tablets that I get at Trader Joe's ($2.49). Also - I have started making smoothies instead of eating the pineapple all by itself. The smoothies work REALLY well (I'm glad too - getting kind of tired of Pineapple). ;o)

p.s. according to my Neuro this is something that should help with all Interferons

Sunday, June 9, 2013

I finally got my Bachelors degree! I don’t think I'd have been able to get it if it hadn’t been for me losing my full time job and getting SSDI

Yvonne Decellis



I finally got my Bachelors degree! I was at SUNY New Paltz back in 1996 to 1998 but then I thought I could drop out and finish "any time". I did not foresee life and MS getting in the way. Not having finished college USED to be one of my biggest regrets. Getting laid off (in 2006) made that regret much stronger.

Getting laid off (and the way it happened along with the illegal things the ex-employer did to me) was awful, but I (eventually) was able to get SSDI (disability).

Collecting Disability allowed me to quit two part time jobs I was somewhat unhappy doing and also gave me the ability to go back to school full time. I often hear people telling me that getting laid off was “the best thing that ever happened” to them. (NOT something you want and/or need to hear after getting laid off.) It took a long time (from 2006 to almost 2012) but I am finally able to say it (to myself!) 

I honestly don’t think I would have been able to get my Bachelors’ degree (as well as get certificates and then go to Graduate school) if it hadn’t been for me losing my full time job and eventually getting SSDI.



Saturday, June 8, 2013

Why I love Avonex plus: how I use pineapples to cope with it and my Multiple Sclerosis!

Yvonne Decellis, Columnist, MS News Channel

I have been on Avonex since 1998. I have found that the way for me to make the shots as "pain free" as I can is to use something like Prilocaine/Lidocaine cream (or Emla) to numb the top layer of skin out.

As for coping with the side effects: 

I really hope this helps you (I can not guarantee it will since different things work differently for different people)...I spoke to a nurse about early March of 2010 and when I complained of how lousy the Avonex made me feel (I've been using Avonex since 1996 and it always gave me flu like symptoms for 2 to 3 days) she recommended eating fresh (unprocessed/uncanned