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.

MS = and Walk MS =

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

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

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!

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

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!

Floating

I'm still having the numbness and pain in my hands and middle of my back. Pain down my left leg, all the rest... the usual. I am taking a break from the gabapentin. I just am sick of taking 16 pills a day and not seeing a difference at all. It's only been a two day break so far.

I'm not feeling very happy still. But Winter doesn't help.
To Mike who commented about the Shingles... my Neurologist said that they don't come back and so far she's been right. I'm sorry you're having so many issues. Hopefully you're on one of the injectibles and it will help.

I was told by a friend today that he was talking to his other friend with MS who is on Tysiabri and that she hasn't had a relapse since. I think that's great news. Who knows, maybe I'll switch. Not sure I have the constitution to do that though right now.

This is going to be a short post today.
I hope you're all well or doing better than yesterday.
Take Care,
Pamela

Still symptomatic

I'm in my 4th week of all this. I'm not happy. I was having a pretty good day earlier and then - just the screaming kids, non-stop, and just stuff in general has gotten me down.

I called the MS nurses line this morning to let them know I'm still having the symptoms. That I even got a new one in the middle of my back. Yesterday I started getting a numb spot in the middle left of my back and it hurts a bit.

The nurse called back and said with everything going on, and the addition of a stomach bug that I got two days ago that lasted about a day and a half, that these symptoms could last 6 more weeks. :(

That just doesn't make me happy. Right now I've got that numbness on the whole middle of my back. This is just below my shoulder blades. Weird area for numbness and it hurts - like the foot asleep feeling.

Just sick of it. A little bummed out. Worried about my kids because of this and the other "upsets" around here.

I think I need sun. I'm watching House Hunters right now and this is the second show of people looking for a place in sun. I need that. I need a vacation and not one that has anything resembling Winter.

I'm looking forward to seeing my best friend soon. But it seems so far away right now. :(

I hope you're all doing much, much better. I think I've got a mixture of the Winter doldrums as well as the crappy MS symptoms make me depressed stuff.

Please take care!
Pamela

"Hurt" is a matter of perspective

My fingers and hands are still hurting badly. I had to get a refill on the Gabapentin and they wouldn't fill it, because when the old script called for 1 pill 3 times daily, going through 90 pills in a week didn't cut it for the insurance company. So I had to call the exchange to get a new refill. The neuro on call called in 4 pills 4 times daily so I got 428 pills - had to come in two humongous bottles! I really hope I don't have to take ALL of these :( Well - not so fast anyway.

The pills are doing their toll on my stomach now - at least the gastrointestinal... - so embarrassing. :(

I got out of the house and drove for the first time in two weeks today. My step-daughter and I went to the grocery store. We were hungry too - which was bad - and the reason for getting the Ho-Hos. Of course, my best friend keeps snacking on Ho-Hos and telling me about it so I had to get some. Of course he's a rail and I'm not. I don't need the Ho-Hos.

Family issues are not the best right now and with that and my relapse my kids are really feeling it. They throw tantrums at the drop of a hat. My daughter keeps wanting to sleep in my bed because she's always scared and my son has had some accidents :(. I feel so bad and sad.

I'm not happy. I wish I could feel my fingers again. I wish I could wake up and not feel pain in my hands or my legs or anywhere else. I wish I wasn't so tired. I wish my children were happy.
I'm sorry - I'm not having the best day at all.

I hope you're all well and doing much better than me today.
Take care,
Pamela

Still numb and sooooooo fatigued

I think the meds and just plain old not resting like I should is catching up to me.

To Ferdinand, I hope you feel better. I won't ever go the pot route - just can't do it. I'm glad you're getting some relief with your meds. I can't wait to not have to take anything for a while.

I hope you're all doing well.

Sorry this is short - gotta get to work before the really bad fatigue sets in. :)
The only person/animal, that enjoys my fatigue is Daisy the Beagle. She loves going up for naps with me on the bed. Spoiled dog!

Take care all!!
Pamela

So it IS from something!

I'm still relapsing - the pain comes and go, but I haven't felt normal feeling in my fingers for two weeks. My hands hurt!

I went to my PCP today and she said I have a sinus infection, my lymph nodes are swollen in my neck... I have "something".

She gave me a Z-pack and I can't tell you how pleased I am with that. Because I don't want to take 3 big horse pills today on top of everything else.

I'm on 1600 mg of Gabapentin now - 4 pills 4 times a day. I have darvacet for the pain and I take ambien so I can sleep :(.

I still have my depression med and my shot too. This sucks.
But I have to say - I saw a story about a woman with ALS today, and I really was thankful that I had MS and not ALS. It could be so much worse- I shouldn't complain.

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

It's so exacerbating!

I'm still in the middle of this exacerbation/relapse/glitch, etc. It hurts to type - my fingers are still numb. I'm on 1200mg a day of gabapentin and taking Darvacet for pain -and ambien so I can sleep.
I do feel like a zombie from the drugs. The drowsiness is horrendous - but I'm like not sure when I wake up when I'm awake and when I'm still sleeping. Whatever that means? :$ So unsure of what I'ms aying too. YIKES.

I've been having issues getting help :( But my parents have come over today to be here through Tuesday. I need to get work done.

Also, my kids have been horrible - but I think it's because of my situation and I cry a lot :(.
I'm a wretched mom. That my daughter has to help me open things like a bottle of water and the door to the basement. She told me today that she was kind of sad about having to do that. But then she said it was because she felt bad for me. :(

I want my kids to be happy and unspoiled. And I really wish they would stop fighting and whining.
I also want my body to work again :(. I so wish my fingers came back to life again - without the numbness, the stabbing tingling pain.

I also feel horrible because I shouldn't complain. The people in Haiti are suffering and it's awful. I watched CNN last night when they showed them pulling a 15 year old who was trapped out. How horrible. I'm so glad she survived. She had been trapped for two days I believe. I shouldn't complain.

I hope you're all well.
Take care.

My Daughter is Amazing

I was walking down the stairs in my 95 year old gimpy way (again - still in the middle of this relapse/exacerbation/flare-up/glitch - or whatever you want to call it) and I was saying to myself, and anyone who was listening, that I wished I was walking like this because I had an injury or something. My daughter was downstairs on her DS and yelled at me.

"You would rather have an injury? You would rather have a BROKEN BONE!" And I said, "I would rather have an injury or broken bone that I could recover from, that would heal then this disease that there is no cure for."

"There's a cure for it!" She said, "They just haven't found it yet. But there is a cure."

She is my awesome optimist!

I should not let this "relapse" get me down... I just really wish I could type without this wretched, painful numbness in my right hand. And I wish could sleep without the burning hot, white hot pain going down my whole arms. :(

But I'll stick with my daughter here - there is a cure - they just haven't found it yet.

Worst Exacerbation EVER! :(

I am in the middle of battling the worst exacerbation I've ever experienced. I hurt everywhere. I can't make a fist with my right hand at all - the pain is unbareable. I can barely get up and down the stairs - it hurts so much.

Last week I started getting a "cold" or something. Apparently a viral infection. I called my Primary Care Physician on Tuesday morning and told her how stiff I was, the pain down my right arm was getting worse, I had a headache that got worse when I moved my eyes. She was concerned that is was "Viral Mengingitis" and told me to go to the ER. So I did. I hurt so much then - but not nearly like I do now.

The ER doc said my CT scan came back fine and all the lovely plethera of blood that they took came back good. He diagnosed me with Viral Syndrome and Multiple Sclerosis. WOW!! I have Multiple Sclerosis?!?!?! Who would have thought!

So I tried to rest, I went about my week and though I was doing better except for the wretched pain still in my right arm. The numbness that hurt.

Then Saturday I went to Costco alone and then Target and I was kind of sore, but didn't think anything of it. Then yesterday I went for a two hour massage! I was so happy to go because I woke up with a "crick in my neck" and it hurt to turn my head to the right. She worked out knots in my shoulder blades and said I would be sore. I've done this so many times before, I know the routine.

I came home, took a bath (a hot bath - I'm so dumb!), then got out and my left wrist hurt, then my neck felt worse, my ankles were hurting, like I had shin splints lower down my legs, right above the feet. I thought, well, it's from pushing that cart and walking around Costco. That could do anyone in who had a little cold.

(By the way - my right hand is numb and painful as I type - I getting used to it - but certainly don't want to - it really, really, really, really sucks!)

By the time I got to bed last night I was in pain everywhere. Ever joint in my body hurt. I woke up that way - only worse. The horrible part was that my 9 year old little baby had to help me get out of bed and down the stairs. :(

She's too little to have to deal with this. To help her mom get out of bed, walk down stairs, go to the bathroom :(.

I called my neurologists office all day and left messages and then the MS Nurse called me back and said, "You've got a virus and getting double-whammies!" She reminded me that Viral infections give you the aches and pains, particularly in the joints, and MS can sometimes cause joint pain... badaboom, badabing! Then she reminded me that when I run fevers, which makes the MS worse, I get another badaboom, badabing!

I told her how I was walking like a 95 year old. I asked if it could be anything else - she said - fight the virus, take care of the pain - it will pass.

I'm hitting the Aleve and Neurontin now - and I'll be diligent.

I can't walk up and down my stairs. I can't get up from my chair or sit down to pee without it hurting my knees to bend, my back to hurt, my hips to ache. I can't open a bottle of water, turn a doorknob, wash my hands without feeling pain in every joint in my hands. Particularly my thumbs. :(

I feel like a horrible mom. :( My kids look scared and my daughter is an Angel who keeps helping me. But she's so young :( she shouldn't have to take care of her mommy. :(
I really, really, really, really hate MS. :(

But I soooo hope none of you have to go through this. I hope you're all doing well.
Please take care.

Pain, Pain Go Away, Don't come again another day

I woke up this morning and my right arm was burning again - it was late too, I had to get online and start work. So I hurried up and jumped in the tub, hoping, out of desperation, for a hot bath to make the pain in my arm subside. Instead the water was cold :( And the more I ran it the colder it got, even after doing the 5 minute wait. Thinking that maybe the hot water heater just wasn't "ready".

Then I was reminded of an appointment my son had, so I had to hurry and wash in cold water. It didn't have an effect either way on the numbness in the hand - it was still there and still painful.

I had a conference call today with a client and as soon as I was off the call my daughter made me test my Brain Age on her new DS game. My Brain Age is 80. Nice. I had to shout the color the word was in, not the color the word spelled. It took me a while to get that or I should say for my brain to get that. But even still - I thought I did well - except for the lagging times. :$ Then there was the math... as if - I suck at it already. I remember when I first was diagnosed with MS I went to have my cognition tested and felt rather clever - at the time the doctor said I did better than most people my age who don't have MS. That was 7 years ago. And truly - I was bad at math before - but I seem to have gotten worse. So here's this computer guy telling me I'm old in my brain. Yeah - nice. Like I needed that. Of course then I had to read from Occurrence at... is it Old Creek Bridge... hells bells, I forgot it already. But I do remember the book - or is it a short story? I even remember the movie of it... I think... from Jr. High maybe?

Nice brain - huh?
So my next torture will be on Friday when I do my Wii Fit Plus - can't wait for that lovely stick figure to balloon into a ball when it measure's my BMI. And then the Wii Fit will tell my my health age is 55 or something like that. Or the one I like the best is when it says I'm not steady when I balance. LOL!! And I spend the entire exercise telling it I have MS - like it can hear me.

But for right now - I am again hoping for a good night's sleep without the pain in my arm. The numb area on the foot is still there. But I have only taken one Neurontin.

Well - here's to a good night's sleep!
Take care all!

I didn't win on Ellen

I woke up in pain again, with the burning in my right arm again and the numbness extending from the circle area on my foot to the side of my leg and thought how I wish I had won on Ellen! Two days of her 12 days of giveaways she had those nice beds as a prize. The Sleep Number and the memory foam one -I don't remember the name. I so wish I had one now. Of course, there is the thought that it wouldn't make much of a difference.

So here I am another night, exhausted and really wanting to sleep, but just afraid to go to bed. I don't want to get up there and not be able to get comfortable again or worse - have the pain again. It's just really awful!

I had a glass of wine earlier. I also bought chocolate today and ate too much. The last hurrah before the new year diet that lasts a week... I'm thinking about having another glass. It was good - a nice Reisling from Barefoot. Strange name for a wine? Not really since that's how the grapes used to be crushed. :D

This spot on my foot is just plain weird. Again, I don't notice it unless I touch it. Or when my foot slides down in the sheets of my bed and it just feels so weird. I think I can best describe it as being similar to the electric shock feeling from L'hermites sign. A much smaller scale... but that's pretty much what it feels like when your foot falls asleep and is coming "back to life" so to speak.

Now I'm also getting the numbness in the middle of my back - in a place where you wouldn't normally have numbness. I was hoping this little "glitch" was from my period starting - but what the heck!!

So when do we truly know it's from MS and not from something else? It's really hard to figure out, especially when I talk to family and they say, "Oh, I get that sometimes" - YIKES!!

Yeah - I don't think so...

Today is definitely a voodoo doll day and someone's got my name on the doll with lots of pins in it! I'm really delaying going to bed... now I'm just rambling and looking at Daisy (the beagle) who just is staring back. She's a dog with a lot on her mind. :D I can tell by all the sighs. It's like she's always disappointed. LOL!! I need to go to bed now!!

Norma Lee - enjoy your time with your son! 21 months - what a great age!!
Ashley - enjoy being a kid! :)

I went out with my little one's today on separate errands - and played Hand and Foot with my step-daughter too. I love them all, even my step-daughter's teenage angst. More than anything, I love being able to truly say - it will pass! Just as I keep saying to myself about these pains. They'll pass. But I still would like a more comfortable bed! :D

Nite all!! Sweet dreams!

That Numby Feeling

I hope you've all had a wonderful Holiday so far! Christmas was good with the kids, my folks and my step-kids. It's been a very busy week and I'm so tired.

Throughout the last 5 days I've had an area on my right foot that has been numb. It hurts when I touch it. Other than that, I don't notice it, because it's not on my toes or heel - its just on the right top side of my foot and goes down a little on the side- just a little. I can't tell if it's going under the foot, because I can't feel it.

I've never had that before. Usually the numbness goes to the toes and fingers too.
I've also had the numbness down my right arm, only with wretched pain. I keep thinking something is pinched in my back. So I haven't tried neurontin yet.

My baby girl is sitting next to me right now as I write this post. She's asking me what the word Neurontin is. I told her. I'm glad she's old enough now to begin asking more questions. I love you baby girl!!

The look on her face when she opened her DS was just the best feeling in the world. I felt like I was going to cry and thought she would too. She was so happy and I was so happy to get that for her. It made my Christmas.

So did the many compliments to my 4th Boeuf Bourguignon! I did the Julia Childs one again and this time really did the whole thing - the pearl onions and mushrooms and all! It was delicious! Tres Bien! :)

Anyway, I am kind of scared to go to bed because it's been painful. Not just muscle - but the numb arm and pains in my legs. I wish I could have a really nice peaceful sleep. Now that would be delicious!

I hope you all have a wonderful New Year!! Be Safe and here's to a WAY better 2010!!
Happy New Year,
Pamela

I got "hugged" today

At least I think I did. And I'm starting to think I get partially "hugged" a lot. That numbness in the middle of my back that feels really tight, I think that may have been an MS "Hug".
But today I felt it big time. It felt like it started in the back and went all the way to the front, but the pain in the back was worse. It wasn't just tightness it was also pain.

So that's how things have been lately with the good 'ol MS. I had a good scan in the summer, but my body doesn't read those scans so doesn't really care when the doc says everything looks good. My immune system says, "Ha-ha!! I'll see about that!" Then I get a cold or my period and Voila! Slam right in the right arm with numbness every day, pretty much. I can't hold a fork sometime the numbness is so bad. I've had the pain down the left leg for over a month. Since it doesn't seem to be as bad so far this week, I'm hoping that ones going away. But the hug, well, it was a couple of hours ago and I've been too busy to look it up. Isn't that funny?

It feels tight still - but not like it did when it happened. When it happened I remembered hearing Montel Williams talk about it and I remember thinking at the time, I've never had that thank God! Well, I think I knew right away what it was. So I looked it up. What I found said that it can be in one side or the other or both. So I'm thinking, some of those other numb back feeling are partial hugs! Awwww - I love hugs!! But I'll skip these if I may! :D

We're so close to Christmas and I can't wait and my kids are absolute terrors and I know its because they're spoiled rotten and they just KNOW they'll get all that they ask for :( I'm a horrible mom! I just want them to appreciate it and have fun and think it's special. They've heard enough fighting around here.

Poor Kate had to help me get up the other day and my Will came to help too. Needless to say they have a lot to deal with for 9 and 5 year olds. :( So I want this Christmas to be really happy for them.

I know I didn't stay with the affirmations. It's hard to come up with positives when you're deep in the negative. But I'm trying again.
So how 'bout this one - "I am a loving, huggable woman and loving mom who is looking forward to a happy Christmas". Like that huggable part! Heck I even hug myself. LOL!! That's just not really funny - but it is!

I hope you're all well. Please take care! If I don't write back before the holiday, please have a wonderful safe, happy and healthy Holiday and NEW YEAR!!

Affirmations & Frustrations

I just logged in to enter my new affirmation and I hear my daughter is torturing my son by not leaving his room. Then she smacked him. SIGH. Some day, he's going to haul off and let her have it and she'll look at me all bewildered. I think I'll just look at her with that look that says, "What did you expect?"

After I write this affirmation I'll go up and do the, "Slumber party this weekend can still be cancelled" threat - which never works, but it's something.

I found this quote today - I can't find who said it, but it's everywhere on the internet... "Life is too short to wake up in the morning with regrets. So love the people who treat you right, forget about the ones who don't and believe that everything happens for a reason. If you get a chance, take it. If it changes your life, let it. Nobody said that it'd be easy, they just promised it would be worth it."

I think that says it all about my life this past week and my new today. I'm happier than I have been in so long and more hopeful then ever. I'm still cautious, but my heart is soaring! :)

With that, here is my afirmation: "I am a strong, intelligent woman and I can be honest and take risks without fear, but with love and courage."

Have a great night!