Category: Multiple Sclerosis

Health · Multiple Sclerosis · Ramblings

Mercury and MS!!

Tracy6 Comments

There is a theory that those of us with MS who have the old mercury fillings in our teeth, should have them removed. But, you do not want to have the mercury fillings taken out and porcelain put in. The reason is that the mercury is encased and if they break it to remove it, then it will get into your system. You need to have the whole tooth/teeth removed and replaced.

not my teeth!! lol

I get this and it kind of makes sense, kind of. I have looked into this and it’s about 50/50. Some notice a difference in how they feel, others have noticed nothing. If I had the thousands of dollars to have this done, sure I’d do it. Even 50/50 is better than nothing. But, again, unless the mercury fillings break, they are doing no harm. I asked a highly respected dentist in Del Mar about this and I trust his word.

Again, I do get it and if I had the dinero, I would do it as we know mercury is NOT good for us!

hmmmm, maybe I’ll change my donate button to “help my teeth!”

xx, Tracy
Multiple Sclerosis

Ampyra – is it helping?

Tracy12 Comments

It’s hard to know if it truly is working. I think I feel changes but then I wonder if it is real or imaginary. I can still move my toes around better, but then I wonder if it is better. It’s very hard to explain my emotions. I want it to work so bad that sometimes I think I am making it all up in my head. Sometimes it seems that it is easier to transfer, then the next time it’s a struggle. I’m still dealing with the insomnia but not sure it is from the Ampyra or the MS. It has been hard to sleep way before the Ampyra, but it seems worse now. I’m hoping it is a side effect that goes away as I do not want to have rely on sleeping aids.

Blah, blah, blah! 😛

Anger · Fear · Multiple Sclerosis · Ramblings

Reality sets in

Tracy14 Comments

When life sets in and slaps ya, it sucks!! My kids go back to school this coming Monday. My son is now going into the 11th grade and my girls are starting HS, 9th grade. Every year we have to get all the paperwork in, proof of residence, registration, pick up books, bus passes, etc. Not being able to drive my poor hubby has to take of work to get all these things done. When the girls registered, they did not have their books in yet, so they had to go back a second time. Then Ashley, being in band camp has a bbq this Friday where parents need to go for all the pricing info for marching band and concert band. Hubbies work is at it’s busiest and it makes it very hard for him to keep taking time off. All of this just lets me know more and more that I am useless and crippled. If I was not ill, I could be doing what the mom is supposed to do. Hubby already has enough on his plate thanks to my illness. As it is, he got Shelby to get her books, but Ashley is just shit-out-of-luck. The band camp bbq is at 5:30 pm. Don’t they know people work? Out where we live people work over an hour away. Commuting baby. I know, it is not their problem, but what about single parents as well? How can they expect parents to be there at these times? 7pm would be much more appropriate for parents.

I know my kids do not mean to make me feel sad, but they get upset when we miss things or have to cancel things. I fully understand. I remember being so jazzed about being the mom of all moms. Sports mom, carpools, etc. My MS has taken all that away from me, worse it has taken me from my family that needs me most. We cannot afford to hire someone to help with these things, so we are on our own. It gets so frustrating for me not being able to do these things for my kids. I HATE being immobile and feeling useless. I’m a worker, not a sitter!!

It is so hard to express how I am feeling right now. Anger, depression, sadness, fear, pain… I try so hard to keep positive, make jokes, be the crazy me. But, this is getting to be too much lately. Sometimes I so wish my hubby would leave me and find someone who can be the wife he deserves and the mom my kids deserve. My heart is breaking right now.

Then to top all of that off, we had to pay 400.00 for bus passes [public school buses]. I figured our taxes should pay for that. Gotta love California and the Terminator. He’s terminating Schools!! Then it is going to cost another 400.00 + for marching and concert band!! WOW!! Just add more salt to my crippled wounds.

Ok, enough depression…I’m off!!

Blessings and Hope!!

Health · Hope · Multiple Sclerosis

Toe gripping…I think

Tracy18 Comments

Normally my left foot does a toe curl thing that I cannot control. It’s quite sexy! 😛 When it happens Roger will try and straighten out my foot. Bottom line, I cannot control the toes on my left foot or the foot for that matter. My right foot has more movement, but I cannot grip them on my own. I guess they call it toe clawing.

NOT my foot!

Well today Roger helped me shower in the kids bathroom again. When I finally got out he went to get me some jammies. Me being me and not waiting for him, got up and tried to get to the sink to rinse with my fav, Listerine. I started tipping over going down and all of a sudden my toes, on both feet, gripped the ground and balanced me!!! I am not sure if Ampyra also works with the feet, but for me this is a first. I was so excited and thinking it was a fluke, I made myself tip again and again gripped and balanced. So, here I sit gripping and un-gripping my toes all by myself.

Could be a start? I don’t know, but I’m taking it!

Blessings and Hope!

Multiple Sclerosis · PAIN · Ramblings · RANDOM

Pain sucks!

Tracy8 Comments

Took my Ampyra at my 7pm time. I actually went to sleep at 10pm which is early for me. At 12:30 am I’m up. Hubby is snoring as he did not put the Snore EX mouthpiece in. I can hear the girls in the front room watching tv and camping out. I’m becoming quite irritated at all sounds I am hearing. I keep rolling hubby over and asking him to put the mouthpiece in. I get a sleepy ‘ok’… and he rolls back over and snores. After about an hour of this I get a bit more ‘aggressive’. Put the fucking mouthpiece in or I am going to smack ya over the head. SUCCESS!! He finally gets it and all is quiet. I’m lying there, completely exhausted, but unable to find sleep.

2 am… pain in my calves. I am used to pain in my legs but nothing like this. It felt as if someone had my calves in a vice tightening it more and more.

Insert calf and tighten

It’s now 2:30 am and I’m deciding if I should pop a Norco or not. The problem with Norco is it kills my stomach if I do not sit up after taking it for at least a half an hour. So that’s out. I do not know when sleep finally came, but the next thing I know my cell alarm is going off at 7 am. Ampyra time! I then read about the side effects for the nth time:

———————————-

seizure (convulsions);

pain or burning when you urinate;

problems with balance; typical for me

numbness, burning pain, or tingly feeling; GREAT

relapse or worsening of MS symptoms;

Less serious Ampyra side effects may include:

    headache, dizziness; have this

    sleep problems (insomnia); DOH

    nausea, constipation, upset stomach; umm hmm

    weakness; uh MS doh

    back pain; Degenerative disc disorder

    stuffy nose, sinus pain, sore throat;  coughing at night

    mild skin itching.  GREAT

    —————————————

    When I read this I have to laugh. MS already does most of this all by itself. So whose to know if it’s MS or the Ampyra. I know the leg pain is the Ampyra as I have never hurt so bad in my calves before. My dizziness has worsened, and my throat is bugging me more than normal. Above, in red, are what is happening.  With most medications, side effects do lessen with time. *knock wood* So, I will remain on it for a few weeks hoping I can get used to it all and that it will lessen with time.

    aarrrghhhhhhhh…

    Blessings and Hope!

Health · Multiple Sclerosis

Ampyra – day 2

Tracy8 Comments

I started the Ampyra Friday night at 7pm. [July 23, 2010] I have heard it can give you a burst of energy, but for me not so much. On Friday I was tired, but tried staying up late. Why, I do not know. Maybe I was waiting to jump up and walk! lol By the time I went to bed, I had 4 hours of sleep. My cell alarm went off at 7am, got up, took the pill, and went back to sleep until 2 pm. Last night [Saturday] took it at 7pm, went to bed around 10:30pm, got up at 7 am, back to sleep until noon.  The only real issue I feel is being more dizzy than normal. Shaddup! 😛

eeeeeeeeek!!

Most of the ‘basic’ side effects of Ampyra I already deal with thanks to the PPMS. So, it’s hard to distinguish between a side effect and my MS. Some people have stated they feel tingles in their legs. I feel things like that anyway, so it might not be all that noticeable to me. It will be different for everyone just like MS is, so I figure when something happens for me, I’ll know. 😉

I would love to hear from others with Primary Progressive MS that are trying the Ampyra. There are not that many studies for those with the chronic progressive form of the disease. Most medications are for RRMS [Relapsing-Remitting] so I’m sure the medication and it’s results will be different for people who are progressive.

So, not much new to tell you. I’ll be back!

Blessings and Hope!

Health · Hope · Multiple Sclerosis

Anticipation…

Tracy13 Comments

So, tomorrow is the big day. 7 AM, my first dose of the Ampyra. To say I’m nervous would be an understatement. I’ll be making my flier today. [click here for explanation]

I’m the type of person that wants it like yesterday. So I will be learning some patience as no medications works instantly. But hey, it could happen!! lol I’m ready to disco baby! Ok, maybe not disco, but at least be able to transfer to the potty with ease! 😛

please, please!!

Hope everyone has a fabulous weekend!!

Blessings and Hope!!

UPDATE: I am going to start it tonight!! Wish me luck!!!

Health · Multiple Sclerosis

The Ampyra Arrived!!

Tracy13 Comments

The Ampyra came this afternoon. I decided to start on Saturday when the hubby and adults are around just to be sure I do ok on it. Since they stressed to me that seizures can happen on this we are having a ‘what to do if mommy starts a shaking’ talk with the kids. 😉 I am making a small flier:

In case of seizure: Turn mommies head to the side, call 911, don’t panic mom will be ok. Tell the ambulance driver to take mommy to the new hospital or Lancaster Community. DO NOT take to Antelope Valley Hospital. This is the most important point!! 😛

Click for larger view

It will be printed out, laminated, and on my door!! lol I’ve never had a seizure in my life and do not plan on having one now, but it is good to prepared and prepare the kids.I’m also going to take the Ampyra at 7 and 7 as someone on it already said it may give me a burst of energy. Sleeping is hard enough at times, so I do not need something else to interfere with it.

Another reason why starting on Saturday is today was a not so good day. I only got 5 hours of sleep last night and was a bit dizzy. Then the migraine hit around 3 pm and I crawled under my covers and tried to sleep. When Roger got home we got me into the kids shower and the warm water helped some. Now I am waiting for my regular meds to start working and hopefully get some better sleep tonight.

I’ll be back…be afraid! lol

Blessings and Hope!

Health · Hope · Multiple Sclerosis

Ampyra – The journey begins!!

Tracy15 Comments

It’s taken it’s merry lil time, but it is happening!! CVS called and they are covering the medication and it will be here tomorrow. It is to be taken 1 pill every 12 hours. I will start tomorrow night so I can set up a 9pm and 9am schedule. I have done the research and found that most of the ‘bad’ side effects are due to not taking the medication on a regular schedule.

Ampyra is the first medication approved for a specific MS issue, walking/leg strength. I am trying to not get too excited as there is the chance it may not help me, but it may!! I have to admit I am nervous and giddy at the same time. Even it just helps me with more leg strength, I will be content. I’m not expecting to start taking it and jumping up and doing a jig. Although, that would be fucking AWESOME!! lol

**don’t get too excited, don’t get too excited!!

woo hoo

Keep your fingers crossed, legs, arms, pray, whatever you do, as tomorrow night as my journey begins!! Thank you!!!

Blessings and Hope!!

Health · Multiple Sclerosis · Sarcasm

One Bathroom does not a happy mom make…

Tracy8 Comments

Here is where we are at:

tile baby!

It’s a bit slow going but in the end it will be worth all the stress. I hope! lol The guys doing this for me work in 100+ degree weather and are beat after a 10 hour day, so coming by after work is not happening. And to top it off, they got their tools stolen at their job site! What fucking loser steals another person’s tools? I hope they catch the prick…I wanna watch!! lol

Thankfully for us we have another full bathroom.

The problem is me! Shaddup! lol Getting in to the other bathroom is a chore for me. My chair only goes in so far and then it is hang on and shuffle in. The bathtub/shower unit barely fits my shower chair, so I have to sit sideways. Getting my leg up and over the bathtub is comical in itself! Getting out, well I’m glad I’m still limber! All I’m sayin’! 😛

I must be spoiled as well, as I do not know how anyone can have 5 people in a household and share 1 bathroom. It’s making me crazy!! Seriously, how do people do it? Growing up we always had at least 2.5 bathrooms in our home…sometimes more. OK, I was/am spoiled. What can I say… I need my bathroom!! 😦

Hey, I know it’ll happen and the guys are doing the labor for free, so I’m content with it all. [on the outside] 😉 Thank God for medication!!

Speaking of medication… still waiting on the Ampyra. Fucking insurance, as usual, does not want to pay for it. Bet if one of their loved ones needed it, they’d cover it. ASSHOLES!! I will get it, just hoping by the time I do it might still be able to help me…

Ah, this is life!

Blessings and Hope!