Author: Tracy

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

This-n-That and Ampyra

Tracy8 Comments

Will start with the Ampyra saga.  I’ve been on it now for 3 months. Do I notice any improvement? I want to say, “YES YES I do”, but it’s not that simple. I do feel that transferring and rising up and down has seemed easier, sometimes. But, then I wonder, was it the same before the Ampyra? I’m sorry but most [99%] of the MS medications are for RRMS and not the progressive forms. They say this is for all types, but I do not buy it. You would think they would WANT to find something for the more serious forms as then the less serious form might be ‘cured’.

Well, it’s kind of a mute point now anyways as a clusterfuck occurred between the insurance and the neuro’s nurse and the neuro. Due to the type of drug this is they [ins] wanted to know the progress after 3 months before refilling my scrip. You would think that would be easy peasy… ummmm nope!! My neuro’s nurse [new] is one not the brightest stars in the sky when it comes to dealing with this. I think she mis-informed my doctor and he canceled the scrip.

can't anything be easy?

She told me to call back Friday night after she spoke with my doctor. Fuck that… she can wait until Monday and this time she better have the right answers. I’m still waiting for a referral from 2 weeks ago she has not done. I’m a pretty patient person [hence my bathroom] but DO NOT push me too far. You will not like it. So we shall see what happens tomorrow.

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I am finally back to doing my jewelry, MzTracyr Designs . I hope the good feelings last as they can go away as quickly as they come. It was really cool being at my design table creating again. It’s been like 3 or 4 months [maybe longer] since I have made anything. Drop on in and take a look if you can.

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Now on to a funny/not funny situation. My wheel-chariot does not seem to want to hold a charge. So, Roger took it apart and tested the batteries the cables and all are fine. I’m wondering if the controller’s wire is messed up since I do run into walls from time to time. lol I’ll be calling them tomorrow. Oh JOY! Now the funny, omg, duh moment… I’m 6′ tall and wheel-chariots are not made for tall people. This one seemed the best so we got it. Well, when Roger took it apart we found that we can raise the seat almost 6 inches! We were busting up laughing and how stoopid we are. I have had the chair since February 2009 and we had no clue. We are not big ‘manual’ readers. lol It is so cool to be higher. I was in heaven today. He raised it so the back is a tad lower than the front and it is amazing. So, now I got the best chair, and it may be having issues. This is so my life!!

Welcome to my world!!

 

xx, Tracy...

 

RANDOM

NYC Fundraiser!

Tracy9 Comments

Update: December 23

Thanks to so many, we have raised 240.00 and the MS society may donate 300.00 as well. WOOT WOOT!

Gifts will be sent out this month to all who have donated. If anyone else is interested, please feel free to read this blog for more information!

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This is a personal fundraiser for my dd Ashley. Ashley’ band has the opportunity to go to NYC Spring 2011. They will be going to: The Empire State Bldg., Hard Rock Cafe, A Broadway Play, Times Square, Bubba Gump, Statue of Liberty, NY Philharmonic at Lincoln Center, and the piesta resistance …their band will be performing in a NYC Parade!!

The cost for this trip is 1500.00 + any monies for her to have while in NYC. It includes all of the above plus round trip airfare and the Hotel.

New York...New York

This, IMHO, is a chance of a lifetime for her and she deserves to go. She has been Principal’s list for 6 years, President’s list for 5. She is in all IB/Honors classes and plays in Marching Band and Concert Band. She also played 2 years AYSO Soccer while still keeping a 4.0. This is not to brag [ok it is a little] but to explain why I feel she deserves to go on this trip.

This is how the fundraiser will work. For any donation 10.00 or over you will receive a surprise hand made accessory made by me. Accessories will range from cell phone charms/lanyards, bracelets, to necklaces or more. 100% will go to her trip.

If you are able to donate, please click the donate button. After you log in, click the send money, then personal, then gift. In the notes please write; NYC Fundraiser. Make sure your address shows up for your hand made item from me.

There is an awesome pair of baked clay UGG’s [discontinued color] here for sale. The money from these is also going into her fund. 🙂

Thanks everyone!!

xx, Tracy…

 

Multiple Sclerosis · RANDOM

Photography

Tracy12 Comments

One of the things I would love to do more of is photography. The problem is my damn wheel-chariot. It makes it hard to shoot what I find intriguing. Abandoned buildings, homes, hospitals, cemeteries. Places with history. Roger bought me an awesome Canon EOS with all the gadgets and gizmos along with a big ole zoom lens. It is something that makes me smile. We also have a couple of amazing 35mm film cameras.

I am a huge fan of a FaceBook site: Another State Of Mind Urban Exploration . They also have a shop here: Another State Of Mind . Their photography and their eye is extraordinary. I urge you to like their FaceBook page as well as check out their shop. As most of my friends know I have a love for the unusual, paranormal, etc. The Asylums and abandoned buildings they find and shoot are first rate. I joke that I am living vicariously through their lens. Which, in all actuality, is no joke.

There are some amazing places in California I am finding with histories and even hauntings. I am hoping to one day be able to go to some of them and shoot some photos. Praying for some sort of crippled access. lol

Depression is a huge part of my Multiple Sclerosis, seeing the photos from Another State of Mind makes me smile, and imagining the stories behind the photos is so intriguing. I would love to show you some examples of their work, but copyright is very important to me. So I implore you to go check out their sites. You will be glad you did.

xx, Tracy...
Multiple Sclerosis · RANDOM

Sleep…Imagine that!

Tracy4 Comments

Sleep would be awesome right about now, except for the fact there are razors blades cutting through my brain… his name is Roger. The Snore-EX worked great for some time now, think he needs to redo it, re-mold it to his mouth. His snoring is making me want to smack him over his big ole noggin with my baseball bat. I try to deal as I can rest during the day, but I need good sleep as well. It is a must when dealing with MS. I always laughed at people who sleep in separate areas, now… not laughing. He needs to get the mouthpiece working or it’s sofa city for him. I’d love to be able to go out and sleep on the couch, but once down I cannot get up by myself. Once he’s asleep there is no getting him to get his ass up and get the hell to the couch. So here I sit… irritated, anxious, pissed, and fucking tired. I have taken my meds to hopefully help me to pass out from sheer exhaustion so I can not hear him anymore. Oh dear meds, please give me relief.

 

need sleep...

 

It is just not my month… Depression has set in, I want my bathroom done already, I feel sick, useless, alone and just plain pissy!!

There is so much I need to get out but have no energy to do so. I blog in my head every night then by morning it’s just gone. I just want to be happy for once, that’s all…

 

xx, Tracy...

 

 

Family · RANDOM

My Artist, My Son

Tracy20 Comments

My son has drawn since he was a lil’ tyke. His teachers would always say, “You know right away which pictures are Austin’s, due to the talent of the drawing”. 😀

We purchased him a ‘How to draw Dragons’ art book 2 years ago and here are some of my favs.

The Hatchling
Majestic
The Fae

This is his newest for school. They had to pick a character and draw it. My son has skills!!

School Project 2010

All of these are drawn with pencil and on 16×20 drawing paper. Not traced in any way. I’m very proud of him!

xx, Tracy...

Multiple Sclerosis · Ramblings · RANDOM

Blah…

Tracy6 Comments

That’s how I feel. Not so much in a bad way, just in a blah way! 😛 All kinds of things I wan to get done, now really energy or oomph to do them. Little baby steps I guess. I’m up early with the kids while they get ready for school. Once they leave I get the dishes done, then tidy up a bit. Trying to get a little routine going again. Once I get that done, boredom sets in. Not feeling the internet much as of late and have seen all the movies on demand and all my DVD’s. Then the tireds set in and it’s off to sleep I go.

I read on a friends FB status how she was off to lie down and have a DVD day. This friend has Lupus. Someone wrote how it must be nice to be able to just lie around and do that all day. I kept out of it as my first instinct was to tell this person to STFU!!!! What we would give to not have to sleep our days away. To be able to get the fuck out of our house, have a job, do chores, etc.. I knew to move on as I did not want to rip this idiot a new asshole. Ya, we loooove not being able to do things. To sleep all day. What a fucking quality of life!!

OK! Done bitching and I feel better….

xx, Tracy...
Health · HELL · RANDOM · Sarcasm

Criptastic!!!

Tracy11 Comments

That’s what I am!! lol The past few days I have felt accomplished. Each morning after the kids leave for school, I’m up and washing the dishes, tidying up, etc.. Some may say, “Big Deal, ooh you tidied up”! Well it is a big deal. Dishes take a lot out of me. Trying to reach up and over the sink to get all the plates, silverware, and glassware is tiring. It’s amazing how a dish can feel like a 20 pound weight. I have bruising on the upper back of my arms from the counter.  But, to me it shows I’m moving and trying to do things. I’m slowly trying to de-clutter. It’s all about baby steps. After getting all the dishes done and things straightened, I’m ready for a nap. 😛 When I was well, my house was spit-spot. You could eat off the floors. Now, not so much. One of my OCD issues I have had to learn to deal with… slowly but surely.

I’ve been on the Ampyra for almost one month. I’d like to say I’m running marathons, but not yet. Ok, never ran them when I was well either! 😉 Do I notice anything different, better? I want to say that it seems easier to rise up from my chair to transfer, but I’m afraid if I do I’ll jinx it. I am going to get out my walker tonight when the hubby comes home and try to at least use it to get to and from the tinkletorium. Wish me luck!! I have not been able to use it since my Hell Hospital stay. That place fuckered me up. But, it would take a lot more than those fools to keep me down!!

xx, Tracy...