A day in the life of a mommy, wife, daughter, sister, aunt and friend with Primary Progressive Multiple Sclerosis! I'm a 40 something mom of 3. Married to an awesome man for 18 years. I love creating things; graphics, jewelry. My family and my friends are my life. I try to be positive...it can be very hard some days, but in the end it is worth it. Blessings!
I love playing word games. My favorites are Words with Friends and Scrabble. My s-mom Cheryl and I play constantly on our iPads.
Well today our girl Leslie is here cleaning the house and was finishing up my room and bathroom. So… I was playing some games with Cheryl and made a comment to Roger that I needed a “p”. He looks at me and says, “You can go, Leslie is done in our room.” I almost fell off my wheel-chariot lmao trying to explain, I don’t need TO pee… I need A “P” for the game. I know, I know probably not all that funny, but I don’t get out much!!
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
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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
It has been awhile since I have created anything or been in my Artfire shop. Hoping this feeling stays with me and I keep going. I was ready to throw in the towel, but thanks to my friends I gave it another go.
A new collection of handmade artisans I put together today.
Thanksgiving is tomorrow, what are you thankful for? Are you thankful for family, friends, wealth, or health? [if you have any of those things]
Well, here is my take on Thanksgiving… [read at your own risk]
Columbus discovers America. [didn't know you could discover a place already inhabited] He sent word home to send more people over. It’s a great land. More people come, but ‘uh oh’, they start dying from starvation, cold, disease. The people, who already lived here, [Indians] step in and teach the people to hunt, grow fields, keep warm, etc. Well, WOO HOO, send more people over we are saved!!
The people [white man, pilgrims] are thankful and [supposedly according to the history books] throw a feast fit for Kings. Thanksgiving!! [thanks for giving?] All is good in the World… for a little while.
I guess it is true, survival of the fittest, only the strong survive, etc. Well the ‘people’ were so thankful that eventually their greed took over and they decided they wanted the land all to themselves. Now they showed their thanks by slaughtering a culture of people. [Indians] hmmmm just doesn’t sound right to me. But hey, isn’t that how it’s always been. We go in and take what we want. They gave, the people took. And they/we call it Indian giving…
To sum it up, we [people] came over, started to croak. They [Indians] came to our aid and saved us. [people] In the end we [people] showed our thanks by giving some land to them [Indians, when it was their land first] then took it back [And they/we call it Indian giving] and killed them [Indians] so we could have the land all to ourselves.
hehehe
I know this isn’t your typical Thanksgiving blog and sorry if it offends anyone. [not] I guess we can get past the true history of the Holiday and give thanks for the now and what we have. I am thankful for my family and friends, everyday, not just on Thanksgiving. To me, it’s just another day in the year, a day we can outwardly acknowledge our thanks. But, at what cost…
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
Our mission is to save cameras from being banged around in purses, while liberating stylish women photographers from the Manbag.
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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.
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!!
When do you know it’s time to ‘throw in the towel’?
To throw or not to throw
I’ve made jewelry for some time now, as it’s something I can do while sitting in my WC. I love it, but it’s getting so hard to do lately. I have a hard time holding on to the tools and beads as of late and, trust me, dropping beads is not fun. I’ve tried all kinds of things, such as glass pendants, no beads and not as hard to hang on to. But, I miss beading and creating those designs. I have around 2000.00 worth of supplies that I have collected over the years and do not want to waste all those supplies. Trying to get them up on Artfire to sell them would take months. I am so confused about what to do. I’m trying to be positive in my thinking about the Tysabri. I’m hoping that if it works, I’ll be able to create again. That maybe I’ll get the strength in my hands back.
Today the depression was setting in big time. Luckily for me puppy kisses held it at bay. My furbabies seemed to know that mommy was sad and took control. I couldn’t help but smile. And I digress…
So, now I need to think and think about what I should do about my shop. Do I throw in the towel or what?
I had my fourth infusion of Tysabri today. One side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. I thought that if you made it through the first infusion and didn’t have any problems with is effect, that it was a mute point. Today I was told I need to get the test to see if I have PML. Just because I have not contracted it yet doesn’t mean I wont. 1 out of 200 people with PML and on Tysabri, could die.
uh WTF!
Kind of wish I knew THESE stats earlier. I’ll be having the test next month when I see my neuro, and am having some blood work done this week to check and make sure the Tysabri is not harming any internal organs.
So far nothing seems different. Again, I know it can take 6 months to one to see anything, but I want it now!! If I do not see or feel any difference in the 6 months, I’m done. Not worth all the risks for something that may not help. So, we shall see.
I have said all I expect and/or want from this is to be able to drive again and hold my bladder. Now, with all the risks, I want it all!!!
