Author: Tracy

A day in the life of a mommy, wife, daughter, sister, aunt and friend with Primary Progressive Multiple Sclerosis!
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!

Hope

The story of Mima!!

Tracy6 Comments

This is Mima.

Mima

She was tortured and mutilated by a sadistic monster who hacked each one of her limbs off… not just once but for days and weeks at a time!! Only a monster is capable of such heinous act!! Currently, there are no laws against Animal Cruelty in Bulgaria.

Thanks to all who donated to our ChipIn campaign, funds were transferred to Mima’s account to help pay for her medical treatment and get her mobile again.

Please help us with our new campaign: International pressure to get Bulgaria to change their laws. Please don’t let what happened to Mima be done in vain. Help spread the message to the world: http://www.cafepress.com/ProtestBG

Please show your support by joining our group. Demand justice for Mima and all other defenseless animals abused and tortured in Bulgaria.

JOIN JUSTICE FOR MIMA GROUP- INTERNATIONAL PROTEST!
http://www.facebook.com/group.php?gid=104654392906259

JOIN AND SUPPORT MIMA’S BULGARIAN GROUP:
http://www.facebook.com/group.php?gid=105973149434180

PETITION- DEMAND ANIMAL CRUELTY LAW IN BULGARIA:
http://www.thepetitionsite.com/1/punishment-for-the-man-crippled-mima
******************
Please stop buy and help bring Animal rights to Bulgaria. Make a purchase from the CafePress shop: [click on t-shirt below]
Click Here!
Pretty Girl!!
Razz!!

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!

Fear · Hope

What if…

Tracy12 Comments

I cannot sleep. Hubby is sleeping peacefully beside me softly breathing. I am sitting here with thoughts flying all over the place. What if  the medication doesn’t work? What if it makes me sick? What if I get the bad side effects? Then back to, what if it doesn’t work? I have waited for so long to find something to help me. I hate my wheelchair, I hate my non-working body. I hate MS!!! What if it doesn’t work? I’m so scared right now. I’m not expecting a miracle as those do not happen to me. I try to remain strong, be positive, keep smiling, hide the real pain. I’m afraid what it will do to my psyche if it doesn’t work. Will I find the inner strength like I always do, or will this be where I finally say no more? What if it doesn’t work and they cannot find anything else for me? What if by the time they do I am too far along in my disease?

This is an overwhelming feeling for me to be so full of fear regarding myself. I usually can put on the happy, silly, sarcastic Tracy face and keep on plugging along. But this, this is a huge breakthrough right now regarding walking for those with MS. I’m not complaining, I’m scared. I have a roof over my head, my hubby has a job, my kids are taken care, so I’m not complaining. I’m just scared.

What if...

It’s almost midnight here and my back is burning in pain, I can’t sleep as way too many thoughts are floating around in my head. My back pain will subside thanks to my meds, so I’m not complaining. I’m just scared.

I want to walk again so bad I can taste it. I know I cannot expect it to happen fully for me as my legs are pretty much useless, but even some strength back would suffice. OK!! Bullshit, I want it all back, but I have to be realistic. I’ll still have the fatigue, degenerative disc disorder, tremors, weakness, migraines, and all the rest of the joy that is MS. Even a little leg strength will help. Right? Then I think will walking even matter? I do not remember how and with my hyper-extended knee will I be able to? Shit, I need to stop over thinking don’t I?

I guess tomorrow, err today is another day…

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!!

Hope · Ramblings · RANDOM

The donations blog…

Tracy1 Comment

Some clarification here. I am in agreement that it is a quirky and kind of pathetic blog and request. Here is my reasoning for it. Read or not, it’s up to you.

My hubby would let me put us in to debt to get this done, as he knows the struggles I go through daily regarding my MS and my feelings of low self-esteem regarding my body. My c-section with my twins lost me some lower tummy muscles and is something I would not trade for the world. lol I am 6′ tall when walking, but now I am 4′ feet or so as I need a wheel-chariot. At one time I was 6′ and weighed 153. I looked good. 😛 Now thanks to my MS and my medications and weight gain due to these issues, me self esteem is low. I can not bring myself to look in the mirror anymore as I do not like what I see. This is my issue and no one elses.

I’ve had people say to just deal with it, I look fine, etc. But to me, I do not. The MS took so much from me, and I want something of the old me back. My body will never be the way it was, I’m not stoopid! lol But, it can be what I feel good about. I will continue to eat right, do what small exercises I can and move forward. My neuro stated the only way to get rid of my ‘issues’ most likely would be surgery in the future. He meant it in a good way. 🙂 It’s hard for me to sit up most times, so tummy exercise are few and far between.

So, there it is. My dream, is maybe just maybe, someone will see this and offer their services. But, I will not hold my breath!! [quacks need not apply]

BREATH!!

The ideal doctor would be Dr. 90210, Robert Rey. Wow, he does some awesome work.

So, there it is. Why the blog, why the donation button. I just can not see me spending that kind of money on me. Thanks to amazing people I’m getting the bathroom of my dreams, and more needs to be done for handicap access to my home. So that’s where we need to focus our funds, there and our 3 teenagers! lol

My motto when things seem far fetched and off base…’It could happen!’

Blessings and Hope!

Ramblings

Love or Hate Debate!

TracyLeave a comment

This is a great site for product reviews. You can also submit products you would like to see reviewed. I have purchased some great items after watching a few of their videos. LOVE IT!

At this time they have a great contest going on to win an Oreck Vacuum cleaner.

All you need to do is drop by the site to get in on this great contest. It’s all FREE!

Love or Hate Debate – Oreck Giveaway

While your there click on the banner for Fabulously40 and join up. Become a premium member and get networking with others like you.Or, just click below and join up now!

You’ll be glad you did! 😉

Blessings and Hope!

Medical · Ramblings

Donations anyone?

Tracy20 Comments

Ok, this is not your typical ‘donation’ blog.

I’m not asking for donations for food, clothing, or anything like that. I am asking for donations for a tummy tuck and a boob reduction. Yes, you read that right. You see, once upon a time I was thin and had perky boobs. It was not children or age that changed my tummy and breastesses, it was my disease. Medications, steroids [which I will no longer do], and being stuck in a wheel chariot does not a good body make. I do a motorized pedaler and arm weights to keep as fit as I can, but if I overheat or overexert, I will make myself sick.

So, here is my pathetic plea. My insurance will not cover this as they do not care about my self esteem or my life. I am NOT doing this for anyone but me. I eat right and do not gain weight, I just cannot seem to lose my belly and boobs. Seriously. Now, if there are any GOOD Beverly Hills Plastic surgeons that would want to help a crippled woman get back some of herself, please contact me. [that was sarcasm as we know that no BH plastic surgeon would give of their time, at least no good BH plastic surgeon.]

Is this blog pathetic? Am I pathetic? Probably. But, what can I say. Being different is how I roll. 😛

A button is also on the sidebar up top! ————>>>>

Donate if you will or not. It won’t change the way the feel about you. 🙂

Blessings and Hope!