Category: Health

Family · Health · Love · PAIN

Out of sorts!

Tracy8 Comments

Do you ever have those days when you know you have something to do or need to do something but just can’t find the oomph? I’m there. The past few days had been not the best MS days and kind of overly fatigued. I know it will pass, but I want it to pass like yesterday.

My bff aka sister form another mister contacted me to let me know her mama [who I think of as a mom] is not doing well and her Cancer has returned with a vengeance. I’m so numb and cannot imagine what my bff is going through.  Mama Jo is one one the finest ladies I have ever known. My mom lived far away and she was like my surrogate mom. She took me in as one of her own. I want to be able to be there for my girl and mama Jo, but this damn MS keeps me immobile. I should be in the car driving out there to be with Liz and flying back with her if needed. I can’t and I feel helpless. No matter what went on in her life she always had a smile for others and a kind word. Please keep them all in your thoughts, prayers, blessings, whatever it is you do. If there ever needed to be a miracle, it should be for her.

it could happen!!

I just hope they can control her pain so she doesn’t suffer at all. She is one the strongest women you will ever meet, a fighter. I love you mama Jo!!

So, ya, it’s been one of those days. Can’t seem to function. Please keep Liz, Will, and Ted in your thoughts, prayers and/or blessings as well. Her children love her so!

Blessings and Hope!

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
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!

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!

Health · Hope · Multiple Sclerosis · Strength

Multiple Sclerosis: Hope on the Horizon

Tracy15 Comments

Ampyra

Is this the medication I’ve been waiting for? The one to give me hope?

In a nutshell, this medication helps you regain leg strength. Click on Ampyra above for the full description of this medication.

My MS counselor told me about a woman with Secondary Progressive MS who is taking this. She is walking again. At this point she is re-learning how to walk. Funny thing is you do forget how to walk. When I used to use my walker I had to remind myself how to move my legs right. So, it seems this medication may work for all types of MS. I have not heard any stories for Primary Progressive, so maybe I can be the first!

Now, I do not expect miracles. Even getting back some leg strength to be able to transfer easier would make my day. Hell being able to get into bed on my own would be amazing!! So, I have a call in to my Neurologist. I am hoping he will call me in a scrip for it. We have talked about before, but I needed to do my own research on it first. This time I am not going to let side effects cloud my decision. If I get any, I will discontinue using it.

————————-

Now, here’s the ‘nothing comes easy for me’ part. My left knee hyper-extends 20 degrees backwards. This cause lots of pain and torn meniscus issues. I had surgery some years ago to fix the tear, but last year was told it was torn again. I have not had surgery as it will keep happening if they do not fix the problem causing it… the hyper-extension [ligaments in the back of my knee are shot].

Problem, no orthopedic will do it. Reason, I have MS and am in a wheelchair so why. The insurance companies will not cover a knee replacement on a cripple. So, if I get leg strength back, what will it matter as my left leg will hinder walking for me. Now they have offered me braces. Have you ever worn a knee brace to stop hyper-extension? They are bulky and they hurt. Thanks, but no thanks. Since I’m not some sports figure I guess they figure why bother. Well I’ll tell you why…

I deserve quality of life just like anyone else. I deserve the same surgeries for this problem just like anyone else. One sports orthopedist told me that this surgery might keep me down, maybe six months, unable to move much. I about pissed myself… REALLY like that will be a big change for me. The end result might be I am able, with the Ampyra to walk again, even if I still need walking aids. I held myself together and when we left that guy and got in to the car, I cried. It was the same from the doctor that did my knee surgery.

Why doesn’t anyone give a shit about us? Why are people with disabilities treated like second, shit third class citizens? Why don’t we deserve the same chances? I’m 46 years old, I have many years left, why won’t they help me?

I am going to go back to my knee doctor once I start the Ampyra. Maybe if there is progress and he sees progress he will re-think the surgery. Oh, I have some swamp land to sell you too… notice my subtle sarcasm! rofl

I am the squeaky wheel kind of girl though. And this will end up being my new project I’m sure. Wait’ll they get a load of me…

Blessing and Hope!

Health · Hope · Ramblings · RANDOM

A Juicer day..

Tracy12 Comments

We played with our new Breville Juicer today. We made a drink using 5 small oranges, 1 mango, 1/2 cantaloupe, and 3 tblsp of greek yogurt. We got 4 glasses, good size out of it. It was yummy. Even the kids liked it. We got ours at Bed, Bath and Beyond using one of my many 20% off coupons. I love that store. Thanks again to my sm Cheryl!!

Loooove it!!

Clean up is a breeze. Even I can do it!! lol

——————-

Tonight is the 3rd season premiere of True Blood! I am so excited. Eric [Alexander Skarsgård] can bite me anytime!!

Now here's a yummy Vampyre...

Can this Sunday get any better?? Well, yes it can… steak for dinner!! Weeeeeeeeeeeeeeee

Blessings and Hope!!