Friday, January 31, 2014

Still fighting after all these years!

It's been a really long time since I posted on my blog, so a quick update.

I switched from Copaxone injections last May, 2013.  I've been taking the oral medication, Tefidera ever since.

It's pretty good for the MS, but I have issues with the flushing.  I think I get the flushing more than "they" expected it to last.

I've had a cold for the last two weeks, not kidding, that I'm still fighting and makes me fatigued to a point - but fatigue is completely different then it used to be before I started the Tefidera!

My kids are growing fast!  My BFF will be here soon!  My family is still my greatest support and we're gearing up for Walk MS 2014.

I started a Booster Campaign to not just raise money for our walk this year, but to raise awareness of MS.

If you'd like to purchase a shirt - please go here: https://www.booster.com/walkmspamelasteam2014

Then wear the shirt to help raise awareness!!

I hope all is doing well.
Oh - one more thing... please don't leave comments about Lyme Disease on this blog.  Don't you think after having multiple MRIs, spinal tap, blood draws, and other tests that the best Neurologist in my area would know whether I have lyme disease or MS?  Lyme Disease doesn't leave lesions on your brain or spinal column.  Please comment responsibly.

Monday, November 15, 2010

My Diagnosis Anniversary - 8 years and still moving!

Eight years ago today I was diagnosed with this dreadful disease - but I'm thankful - because I'm still moving, still working full-time, still active, still able to take care of myself. I have every reason to be grateful!! I'm grateful for my kids, my family and my friends, especially my BEST friend!! He's made me the happiest even before I found out I had MS!!
So I am grateful and happy!!
Hope you're all well!!
Take care!
Pamela

Wednesday, April 07, 2010

Looking Forward on my own - or with a changed support system

After ten years - not all happy, my husband and I are going to divorce. It's ok. We still get along - for our kids, for my step-kids.
He's a good person, just not a care-taker. I'm a good person, just not used to having to need someone to take care of me. And I KNOW I've been really more bitter since I was diagnosed with MS. But the support wasn't always there, which led us to this point.

We've moved on in the last year - but until a few weeks ago he still lived with us. Now we're doing the visitations with the kids and separating everything to prepare for a divorce. It's just harder than I thought. With the lingering issues from my relapse that began in January, it's been a battle keeping up with everything by myself. But I'm managing.
This week I actually let the laundry pile up and let the house get messy - mostly from the pollen dust that is coming through the windows because we've had gorgeous weather. So really, I can't complain.

Having MS is hard. You need to have people around you who, even if they can't really understand what you're going through, at least empathize with what you're going through. Who, when you say you're fatigued, don't say that they are fatigued too... because it's so different from being tired. Who, when you tell them, it feels like my foot is twisting into a pretzel, or it feels like my toenails are pulling off my toes, they say, like my wonderful neurologist said, "that's just what it feels like, it's really NOT happening". :)

You need to have people around you who are encouraging, who read about what's going on with MS patients, who encourage you to talk and who really want to listen.

My family is great! My parents are so wonderful, my kids and step-kids are awesome and my friends are so wonderful, particularly my best friend!!

My Neurologist said once that there are a lot of people with MS who find out after their diagnosis how their partner isn't a care-taker. It's sad to think that we have to expect our spouse or partner to be a care-taker - but that's what true love is... you just do it! If you can't... it's not meant to be. But I wouldn't trade the marriage I've had for the world because I have the greatest love in the world for my children - the step-children included. My life would be so sad without them and I love them so much. For them, I am forever grateful for what I've had with my husband and for all the good memories, there are no regrets at all. I don't even regret that it's ending. I'll only regret if we stop getting along and can't continue to be friends.

I hope you're all well!!
Take care!
Pamela

Wednesday, March 17, 2010

Please Be Responsible in Comments

I'm really getting sick of people posting comments about so called "Miracle Cures" to Mulitple Sclerosis. It's great that things have worked for you, but it's irresponsible to tell people to stop taking their medications because of political reasons or whatever else. It's irresponsible to not have clinical proof to back up your comments.

What works for you doesn't work for everyone else and it can be dangerous to tell people to stop taking their medications.

I appreciate all other comments, but please be responsible. People seek help or other view points to what is going on with them. This blog is to help me share my experiences. I happen to be on an injectible and other meds that I don't always take.
I hope I help others.

Please understand that I don't wish to keep comments trying to sound factual where there is no proof.

I hope all my readers are doing well. Please take care!

Wednesday, March 10, 2010

Sensory Relapse

I went to my Neurologist on Tuesday and she agrees that I'm still having symptoms from a Sensory Relapse.
We agreed that the Neurontin (Gabapentin) isn't doing it for me, so she wrote me a script for a new medicine. I'm sorry, I don't remember the name of it right now. carbomazapine or something like that. I'm anxious to get started on it, but I was out all day and didn't get a chance to get it filled yet.

I have been out at clients all day today so that was good. Felt good to be able to be out. Also, it's a beautiful day! I hope it's this nice tomorrow too.

I'll update on how the new meds work. I see my neurologist again in May, so hopefully these 6 weeks of my MS winter is almost over!

I hope you're all well. Please take care!
Pamela

Sunday, March 07, 2010

Life Changes but MS Stays the same so far :(

I still have the numbness in my hands. My left foot did the thing today where I couldn't move my toes, until I picked up my leg and put it on the floor. My feet still hurt. My stomach has been so uncooperative. But I'm trying to stay so active.

The weather was beautiful today. I got out for a walk with my daughter and the dog.
I really can't wait to feel like myself again. So much is going on... life is really hard right now, having MS is such an inconvenience.

I feel so exhausted right now and I want to sleep so much - but I don't have time.

I hope you're all well.
Take care!