Category Archives: multiple sclerosis

April 14, 2012

Where is the rock for me to crawl under?

By Tracy

I’ve been trying so hard to get out out of  the ‘whatever’ mood I’m in. I’ve been blogging [duh], updating my jewelry shop[s], tweeting and pinning like a mad woman… but I just can’t seem to shake the blahs. I just wanna crawl under a rock!

hiding...

Tomorrow is the MSWalk2012 and I’m so not feeling it. My legs have not been cooperating. Even being in a wheel-chariot all the time the legs have issues. I’ve been getting the shakes, and from sitting all the time, serious ankle swelling. Not liking ‘kankles’!! :-P Kind of sucks when you have to sit and then you get issues from it. **SMH** It hurts when the legs swell and embarrassing when they just start shaking all over the place. Hubby calls it ‘the rhythm’ and always asks if I wanna dance! Dork! lol I’m fighting between dealing with pain and embarrassment, to the guilt feeling of not going. My team, Tracy’sMSkateers are the best. They had a big ole bake sale at NBC/Universal yesterday to raise money for our team. Think they raised over 1000.00!! Woot Woot! I feel like if I don’t go I’m letting them down. I really want to go, but really not a fan of pain. I even bought a cute orange shirt for the walk…

I’m going to confess something I have not really touched on in the past. I hate me! I really do not like going out in to public due to the all the weight I have gained since being in my wheel-chariot. I was once tall [6'] and skinny. Now I’m short [4'4" in my wheel-chariot] and huge. I have gained almost 60 pounds and I hate the way I look. I try to keep away from mirrors as I get depressed. I will take responsibility that I sometimes eat what I shouldn’t, but most days I eat right. It’s so hard to lose weight when you are immobile. I’m embarrassed by my weight, and prefer hiding out at home. I know the extra weight is not helping my MS either. It truly has nothing to do with what others think… it’s all about what I think. So in a nutshell… I hate what I have become.

xx, Tracy...

14 comments   |  tags: , , | posted in anger, confession, Darkness, Depression, FUCK, lonliness, multiple sclerosis, Pain, Ramblings, RANDOM, sadness, Wheelchair

April 13, 2012

Well slap my ass and color me Orange!! MS Walk 2012!!

By Tracy

Yup it’s that time again. I seriously have slacked off this year with the promoting of the walk. My walk is this Sunday, April 15 at the Rose Bowl.

I roll so no one will ever have to hear the words, “You have MS!” No child should have to watch their mommy slowly lose her abilities. No child should have to see their mommy be taken away in an ambulance. No mommy should have to explain to their children why she can’t get out of bed, why she can’t drive them places, why she can’t play with them. (Daddies and others also have MS, but this is what has happened to me) MS is a family disease, not only the person with MS is affected.

My fabulous team, Tracy’s MSKateer’s, is comprised of the best people ever from NBC/Universal. Best looking team too! ;-)

If you are able to help, please click on the banner below and donate to help find the cure. If you are not able, please share my page and/or blog as maybe someone you know is able to donate. 

Click the banner to go to my page! xx

I hope for the day when I can get out of my wheel-chariot. If that doesn’t come for me, I hope with research no one else has to ever be in a WC again.

xx, Tracy...

2 comments   |  tags: , , , , | posted in health, hope, medical, multiple sclerosis, RANDOM, Wheelchair

April 10, 2012

OMG, he’s cuttin’ my neck open…

By Tracy

That was my reaction when my port was put in a few months back.

Let me backtrack a bit. In February I had a port put in my chest. With the monthly  2 hour Tysabri infusions it was the best option. Me ole veins are gone and sticking me each time was getting painful and harder to do. So cool, a port, a lil contraption with a tube under my skin in my chest going in to a vein. Easy peasy, right?

First problem when we get there is no ‘twilight’ sleep or meds, as, well, no veins for an I.V. Hence the need for the port. But it’s all good! The area will be numbed up and I’ll get a shot of Ativan [not that it would work on me]. I finally get wheeled in and the doctor comes in. He looks at the area for the port, then lifts the cover from my face. He says from his charts he assumed I’d be older but when he saw my skin and how ‘young’ it looked he had to see me. ummm hmmm smooth talker! lol Meanwhile Ativan not kickin’ in… they proceed to give me some injections in my chest to numb it up! OUCH! But then he injects my nck!! Um, WTF why are you injecting my neck. **shivers. Meanwhile Ativan not kickin’ in… He starts the incision into my chest, no real pain just pressure. Then I feel my neck getting cut. Okay, I speak up. “Why are you cutting my neck?” He asks me if I understood the procedure. I told him that I was told it was a a lil contraption with a tube under my skin in my chest going in to a vein. He explains it in a bit more detail. He tells me how the lil contraption [the port] goes under the skin in my chest, then a tube is brought up through my neck, around and down towards the heart into a vein. Okay then!! I guess it’s too late to turn back now! ;-)  Meanwhile Ativan not kickin’ in…

All in all, it wasn’t too bad. I hung out in recovery for a bit and then we headed home. On the ride home… the Ativan finally kicked in!! Go figure. lol

on the way home

BAD reaction to the tape and bandages. owie

today

I figure, dudes dig chicks with scars right! :-P I tensed my neck a bit so you can see the tube going up through my neck! Cool right. When I do this it freaks out my kids!! lol

Peace out all!

16 comments   |  tags: , , , , | posted in Hospital, multiple sclerosis, Pain, Ramblings, RANDOM

April 9, 2012

No more sugar coating it…MS suuuuucks!!

By Tracy

I try hard to find the humor in having MS, but honestly…NOT funny! For me, the only way to cope is to find the humor. It’s getting harder daily.

To be ‘upbeat’ about it, I do have blessings in my life. I have a hubby who stands by me, 3 fabulous teenagers [yes fabulous and teenagers in the same breath], a roof over my head, food, and the list goes on. Roger [hubby] has spoiled me: mini fridge in my room, microwave, 40″ flat screen, hospital table, MAC, iPad, iPhone, etc. My parents purchased me an awesome king size adjustable bed. So on the outside it may seem ‘all good’. Yes, what a life. I can spend my time cozy in my bed, watching my Crossing Jordan on Netflix, dozing, cuddling up with my 3 dogs, play on my MAC. Joyous, right!

But on the inside emptiness prevails. I’m alone most of the day, no way to just get up and go, have a life…a quality life. I can no longer make my jewelry as my hands drop things all the time. The stress and sadness that causes is unbearable. Yet another thing my MS has taken away from me. Sometimes I think I must have been a real bitch in a previous life! Most people would laugh and say, “In a previous life?!!” :-P

So how do I cope? Never said I do, I just keep on breathing. I’ll never cope too much has been taken from me. Being primary progressive is a slow drawn out death. When dx’ed in 1997 [finally] I have gone from a cane, AFO’s, walker, manual wc, to a power wc. The fatigue is paralyzing. And fatigue and being tired are two separate issues. Being tired, I can sleep. Being fatigued, I just lie there, empty and alone.

please no more

I’m feeling all of this right now as new issues happening yet again. I’ve tried many different meds. All of which did not help or caused other problems. Now, the Tysabri, may have to be stopped due to a rise in my liver counts. We will find out next month. Two blood test have shown a rise, if the third does, yet again, another med bites the dust. After awhile you feel like ‘why the fuck should I keep trying!’ With every new issue it feels like another part of you has died. The mourning period starts.

I know, I know, “Poor me, pour me a drink!” I wish a pity party was that simple. And trust me, the last I want or need is anyones pity!! That just pisses me off. This blogging thing is to help me get it out and down in to words. Trust me, I know I’m no writer, but it’s my blog and I can blog if I want to! HA!!! I’ve not been blogging much as my hands will not cooperate. I have Dragon Naturally speaking and am trying to figure it out. lol My problem is it won’t allow the work fuck!! You know that doesn’t work for me! ;-) Figured I’d blog to let my readers know I’m still alive and hmmm not kicking… you get the idea.

One last lil’ diddy… ‘Be kind, for everyone you meet is fighting a hard battle.’

Off to watch more Crossing Jordan! [love me some Nigel]

Peace out peeps and peepettes!

14 comments   |  tags: , , , , | posted in boredom, confession, Depression, family, FUCK, health, lonliness, mindless-thoughts, multiple sclerosis, Quotes, Ramblings, RANDOM, sadness, sarcasm, Wheelchair

February 3, 2012

Hotel HELL

By Tracy

In my head I do not ‘see’ myself as crippled. I just see me. Unfortunately there are little issues that pop up to remind me.

Next week we are heading to Carlsbad/San Diego so I can go see my Uncle, the dentist. Finally going to find out what’s happening with my painful mouth. We usually stay with my parents in Carlsbad at their home, but it can be rough for me with no ‘crippled’ access. Roger and I decided we would stay in a hotel nearby with the roll in showers and accessible rooms. We had stayed at the Hampton Inn Carlsbad once before and it was perfect. Now, here’s where the fun starts. I called to make a reservation making sure I could get a roll-in shower room. They said they were booked for those rooms on those dates but had an ADA bathtub room. I explained that will not work for me and he said to try the hotel next door, the Homewood Suites by Hilton. Okay, cool. I thanked him and called. The Homewood Suites had no availability for these rooms either so he said he would call the Hilton Garden Inn Carlsbad. By now I’m feeling a bit nervous and stressed and crippled. All this to get a hotel room? I figured 3rd times the charm, right? Wrong!

The Hilton Garden Inn had roll-in shower available rooms. Woot woot! Not so much. Now we could pay for and ‘reserve’ this room…but…they can not guarantee we will get the roll-in room. Ummmmm, what? I’m paying for the reservation [reserving] the roll-in room, but you cannot guarantee it. WTF! Basically, we can pay for it, but once we get there is may not be available and we will get an ADA bathtub room. Now I’m not only confused but getting angry and tearing up. I ask the guy why the other hotel has the rooms and also has them reserved for the people. [why I couldn't get one there] He’s sorry but there will be no guarantees for the roll-in room. I explain that if we pay for it and it is not available that I will need to cancel and get my money back so I CAN find a hotel with the room I need. He explains that no money will be refunded as it’s a two day cancellation policy. I then explained that the ADA will not be happy to hear about this.

After a few no so nice, yet adult like comments, I hung up. Wow, I can’t even get a hotel room… I really am crippled! Fuuuuuuuuuuuuuck!

I call my parents and burst into tears explaining what happened. After a few minutes, I calmed down, [thank you Cheryl] regained my composure, and realized I can tough it out for two days in their house. It’s just the bathrooms that cause me stress.

Now that I was composed, I noticed there was a Marriott nearby as well. I figured, maybe the 4th time is the charm and fuck Hilton! :-P

Dialing the number, crossing everything, I call The Courtyard By Marriott Carlsbad. [oh please, oh please] My first question to the sweet voice on the other end was, “Do you have roll-in shower rooms?” She says yes. My second question was, “If we reserve one, will we be sure to get one?” She says yes, they will reserve it and put a block on that room for me!!! HALLELUJAH…HALLELUJAH Really, I heard music! So this  lovely girl made our reservations, blocked the room, and instantly sent me a confirmation.

Marriott - a crippled persons dream! :p

My stress was lifted, my spoons replenished. I will NEVER deal with Hilton again. They may be and have accessible rooms, but they are NOT cripple friendly. Marriott, you are my new love, Thank You!!

Love and light peeps!

12 comments   |  tags: , , , , , , | posted in anger, bathroom, Depression, FUCK, HELL, multiple sclerosis, Ramblings, RANDOM, sarcasm

January 31, 2012

Wildflower

By Tracy

This song resonates deeply inside of me. Thank you Laurie for posting on my FB!

My favorite part of the song is…

“Be careful how you touch her for she’ll awaken; and sleep’s the only freedom that she knows”

The whole song means so many things to me..

__________________________________

Wildflower by Skylark

She’s faced the hardest times,
You could imagine
And many times,
Her eyes fought back the tears
And when her youthful world,
Was about to fall in
Each time her slender shoulders,
Bore the weight of all her fears
And a sorrow no one hears
Still rings in midnight silence
In her ears

Let her cry,
For she’s a lady
Let her dream
For she’s a child
Let the rain,
Fall down upon her
She’s a free and gentle flower
Growing wild

And if by chance,
I should hold her
Let me hold her for a time
But if allowed just one possession
I would pick her from the garden,
To be mine

Ummmm………………..
Be careful how you touch her,
For she’ll awaken
And sleep’s the only freedom,
That she knows
And when you walk into her eyes,
You won’t believe
The way she’s always payin’
For a debt she never owes
And a silent wind still blows
That only she can hear
And so, she goes

Let her cry,
For she’s a lady
Let her dream,
For she’s a child
Let the rain
Fall down upon her
She’s a free and gentle flower
Growing wild

Let her cry,
For she’s a lady
Let her dream,
For she’s a child
Let the rain
Fall down upon her
She’s a free and gentle flower
Growing wild

She’s a flower
Growing wild

She’s free…….

Love and Light ~Tracy

1 comment   |  tags: , , | posted in love, Lupus, multiple sclerosis, music, Ramblings, RANDOM

January 19, 2012

Prioritize?

By Tracy

Do you get overwhelmed? OMFG… I do all the time.

There are so many things that need to be done for my family and around my home. If I were MS free the shit would be over and done with. My family and house would be rockin’! It’s time for to-do lists I’m thinking. I need to put all the things that need to be done in order by priority. Then figure out how to it all…

I do not start out the day with many spoons, so I must utilize them smartly.

Need Spoons!

There is sooooooo flippen’ much clutter in my home that some places are hard to get into with my wheel-chariot. My closet has become ‘here’s where all the junk goes’ central. And, yes, I’m a bit [huge bit] of a pack rat. It’s hard to let go of things. I guess we could buy a bigger house so I can have a ‘junk’ room… Okay, back to reality!! But, that is an idea! :-P

Where to start:

  • get tax stuff together
  • go through closet and get organized
  • get salvation army pick-up together
  • get all my jewelry pieces together and clean design area
  • find someone to hangs doors and add door guards [to protect from wheelchair, lol]
  • carpets cleaned
  • front closet cleared out

Now these things may sound easy to some, and years ago I would have been done in a couple of days. Now, this stuff could and most likely will take a month or more to complete. Now all I have to do is to decide what to do first and how to get it done!!

Decisions…decisions…

Peace out peeps!!

5 comments   |  tags: , , , , | posted in mindless-thoughts, multiple sclerosis, Ramblings, RANDOM, sarcasm, Wheelchair

January 18, 2012

Wheelchair seatcovers…

By Tracy

I have had my Jazzy 600 for almost 4 years now. After a while the seats WILL shred and rip. ewwwwww

you know, you've been here

I have been searching for over 1 year for a seat cover for my chair. Due to the arms on the seat it is hard to use a basic cover. I also did not want to have to cut arm holes into the cover. During a Google search I happened to look down at the sponsored links and saw an ad for Cabela’s . I went in to their auto seat covers section and found the Cabela’s Universal Fit Bucket Seat Cover. It was inexpensive [at the time 9.99] and was mad of a water-resistant urethane. Perfect. I figured for this price cutting holes in the arms would be ok to do. To my JOY, I did not have to cut anything. It is a shell of sorts.

I know wrinkles, but when seated no one sees. lol

The back, open enough for back seat bag.

The regular price is 19.99 for one seat-cover. It is sturdy and easy to put on. I love the fact no more nasty cuts on my chair or scraping on my legs. If you need a cover for your wheel-chariot, I recommend this.

My on site review:

I have been looking for a seat cover for my Jazzy 600 Power Chair [electric wheelchair] for quite some time. No one carries them. Regular seat covers are hard due to the attached arms and wires on the chair.
I figured, the price was right for this cover and I could cut arm holes. I was so happy to see that no holes had to be cut, and it fit my high-back chair perfectly.
Will be buying a couple more so i have them at the ready.
Thanks to Cableas!

Direct link to the cover is here.

Happy Shopping!

Peace out!

Leave a comment   |  tags: , , , | posted in multiple sclerosis, Ramblings, RANDOM, Wheelchair

January 13, 2012

2012 Hooray?

By Tracy

I’ve been asked recently why I haven’t blogged, honestly, I’m just blah! Lately not much on caring or really even trying. 2012 started out with flu going through my house. 

I have not had the flu for years thanks to my MS. Yes… thanks to my MS. My immune system is so overactive that colds and flus go right past me. The Tysabri infusions suppress my immune system, so, lucky me got sick! As we all know the flu makes ya all weak and shit. Times that by 1000. I’m already weak so the flu pretty much paralyzed me. Happy fucking joy joy! I’m trying to be positive that since the year started out so horribly, it can only get better. <insert sarcastic evil laugh> When I used to think that way I went from legs braces to a cane to a walker to a wheel-chariot. So the ‘it can only get better’ comment doesn’t mean all that much to me.

On a positive note… I’m getting a Picc Line inserted in the next month or so. My veins are pretty much non-existent and it hurts like a beotch when trying to find my veins. So this is a good thing. It’s a damn good thing I’m not an intravenous drug user! Seriously!! lmao

Now to share an amazing song my kid’s former nanny, Marilyn, hooked me up with. We are so blessed to still have her in our family after all theses years! She knows me so well, this is my song!

Hard Life – Brad Paisley

_______________________

Lyrics

Stop starin’ at me
Leave the sad looks at home
Everybody feels bad,
And you don’t understand,
It’s not like I’m alone

‘Cause everyone has battles to fight
And I don’t need your sympathy tonight

Yeah, it’s a hard life
But I’m okay
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
And yeah, I have a hard life but in some ways everybody does

There’s a lot I can’t do
But don’t be judgin me

I’m in a body I hate 
But I have my faith, more then what you see

So what if I can’t kick a soccer ball into a goal?
I feel like I can lift 500 pounds with my soul

Yeah, it’s a hard life
Oh, but I’m okay
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
Yeah, I have a hard life but in some ways everybody does

And some like me have lost their battle
But they will be the sun that gives you warmth,
And lights the way so we can shine on

Yeah, it’s a hard life
But I’m okay
If I didn’t have this, I wouldn’t be who I am today
And I have lots of friends
Oh, and I have love
Yeah, I have a hard life but in some ways everybody does
Yeah, I have a hard life but in some ways everybody does

_______________________

Love and Light! xx, Tracy

7 comments   |  tags: , , | posted in boredom, Depression, FUCK, health, medical, medications, mindless-thoughts, multiple sclerosis, Ramblings, RANDOM, sarcasm, stupid_stuff, Wheelchair

November 22, 2011

I ‘got’ an Epiphanie!!

By Tracy

No, I didn’t ‘have’ an epiphanie, I got one. An Epiphanie camera bag that is.

My Canon camera bag is nice, but let’s face it, it’s more of a ‘man’ bag. It’s big and bulky and very hard to get in and out of. Being in a wheelchair it’s very hard to carry around along with my purse, phone, and well you know! lol

———————————–

From the Epiphanie FB page:

Our mission is to save cameras from being banged around in purses, while liberating stylish women photographers from the Manbag.

———————————–

Being in a wheelchair, the Epiphanie Bag is the solution for me! I can put the strap cross-body and lie it in my lap. It will be easy access AND carry all my other necessities of life. I’ll finally be able to have my camera with me. I cannot wait for it to arrive. The biggest and only problem I had on the site was deciding which one to buy! lol It took me over an hour. My daughter Ashley was the tie breaker.

The winner is:

Ginger in black

I did my research as well. There are ‘other’ bags [which will remain nameless] similar to this, but the comments and posts I read in forums, came right back to Epiphanie.

I must also thank my friend and fabulous photographer, Jen, for sharing the link to Epiphanies FB page.

I highly recommend checking out Epiphanie and joining their FB page if you are a female photographer looking for a new and stylish way to carry all your camera needs. Now, we do not want to leave the men out in the cold as there are many men who are secure in their identities that may love these as well. :-D

Drop on by, check them out, and tell ‘em Tracy sent you! ;-)

So there you have it… I GOT an Epiphanie!!!

Peace out!

PS: The Lyric in yellow and Lola in red I love as well. *hint hint* family and friends!! :-P

6 comments   |  tags: , , , , , , , , , , | posted in Happiness, Holiday, multiple sclerosis, Ramblings, RANDOM, shopping, Wheelchair

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