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!

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!

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!

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!

Tuesday, February 09, 2010


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,

Thursday, January 28, 2010

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!

Saturday, January 23, 2010

"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,

Friday, January 22, 2010

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!!

Wednesday, January 20, 2010

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!

Sunday, January 17, 2010

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.

Tuesday, January 12, 2010

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.

Monday, January 11, 2010

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.