It’s Thankful Thursday!! I say it like it’s nothing new, hahaha! But, it’s new for me. I’m not
big on New Year’s resolutions or declarations but this year I’m really feelin it. Living with intention keeps popping into my head and it feels good. Here we go
1. I’m thankful to be alive. Seems like a no-brainer but I truly am.
2. I’m thankful that I’m able to walk. I think sometimes I forget just how hard it was a few years ago.
3. I’m thankful for the internet. I said it. I’m taking new graphic design classes and finding out that I have a thimble full of creativity in me. I always thought I had none.
4. I’m thankful for my partner in this life. It’s been 15 years now and we still can be in the same room together and not drive each other crazy. I call this amazing.
5. I’m grateful for the roof over my head. We’re living in a place now that I never thought I’d live and it’s humbled me for sure.
There’s my first Thursday. I feel good about the upcoming year. It’s going to be a good one if I have to put it in a headlock and make it one.
So today I got my holter monitor attached to me. Mine is either really technologically advanced or this is a really old photo of a woman wearing a holter. In my search for images I noticed that the top two electrodes in ALL the photos were placed up higher on the chest, just like in this photo. Mine are placed on the top parts of my boobs. What the heck?? And the unit itself is the size of a pager. Doesn’t that just date someone when they say ‘pager’? I recently flew next to an 18 year old kid who had never seen one. (hahaha, I schooled him on how life was back in the stone age) Anyway, had I looked these up yesterday I would have asked the tech who stuck them to me why the heck are they on my actual boobs. Now I feel like 2 days from now when I go to get it removed another tech will look and go “oohhhhh. Marcia put this on, right? tsk, tsk. We have to do it ALL OVER AGAIN.” Because that’s the kind of luck I have.
So rewind to 4:30 this morning, I got up, sat in our recliner and cried like a baby. Not because I had to get a 48 hour holter, it’s just I’ve hit my limit in the sick-kid game and when this happens, and it does, I crack and weep like a baby. Trust me, as hard as we try not to cry, letting out a good cry ALWAYS makes you feel better. Purged. Then I threw my ass in the shower and as I was getting ready, I was searching for my eyebrow makeup. Where could it freakin be??? And I thought about it, I only do my eyebrows if I’m going to the doctor. And that’s it. And it hit me, I only put my eye brows on when I have an appointment. Not because I’m trying to look good, but that’s the only time I leave the house anymore!! I used to be wearing a face at all times. I’ve been known to sleep in makeup (ewwww) for fear someone would see me with no makeup on. Is that crazy? Yes. But I’ve never said I wasn’t crazy. Fast forward to 2014 and I never have make up on. Like ever. I guess the line is eyebrows. I refuse to be seen without em. The crazy sick lady with the rockin eyebrows is out and about today people. Make a wide berth…
I was just having a really crappy, feel-sorry-for-myself day and it all changed when we stopped at the hospital to visit my niece. She just had a baby. Oh. My. Gosh. If you ever feel so low that you just can’t see the light at the end of the tunnel, find a baby and hold them. She was the most beautiful baby, making all the right new-born baby faces to make a heart melt. Now I’m home, under a bunch of blankets (the mid-west big freezzzzzeee), rockin some awesome eyebrows and cuddling with the Bean…
I have just done nothing with this blog for so long. I’ve thought about just shutting it down, or letting it float in the inter webs forever; my rants forever floating…hahaha. I’ve got the itch to write again. The excitement that builds up when you think about it, changing blog themes incessantly getting all pumped up to write something, anything!
That’s where I’m at right now. I know that I want to jump back into advocacy again: I’m SO tired of dermatomyositis getting no play out there in the land of awareness. Bratty foot stomping here. So, if I want things to change I need to try and change them. And here I am. ??
Here’s a link to a depressing article about DM and the onset of cancer with specific antibodies present and lots of very scientific-ey words. Bam!
and here’s a picture of a cute puppy. Just because.
This cute doggy was found at The Meta Picture. Ok, I’m going to read for a while and crash. Big time Friday night over here!!
test test test
Rare disease day is here! This is the one day where I can celebrate my uniqueness. With a bunch of other uniquers. Haha! It’s nice to talk to people who have DM and get that ‘uh huh’ and ‘oh yah!’.
Even though the word rare means
1.(of an event, situation, or condition) not occurring very often.“a rare genetic disorder”
synonyms: infrequent, scarce, sparse, few and far between, thin on the ground,like gold dust, as scarce as hen’s teeth;
we still have a large amount of people with rare diseases. I think it’s like 30 million people in the US have a rare disease and there’s around 7, 000 rare diseases on the list. It makes it hard to get funding for research, hard for people to connect with others with their same condition. I read this somewhere (don’t quote me on this) but I think it said like 95% of rare diseases don’t have one FDA approved treatment for their disease. That’s just nuts.
I’m going to link a few places to check out, if you’d like to spread the word, read up, or meet some people like yourself.
I hope you all are having a great day. I’ll be back to blog soon.
Until next time,
We’ve been ‘moving’ all summer long and I keep saying “this is the home stretch” and “it’s down to the wire” and all these other ridiculous expressions and now it really is.
I’m sick, no surprise there, and just weak as a cat. Woke up this morning at 6 restless as hell, spent forever being sick and laid in bed switching blog themes here. Just wasting time. This one doesn’t even work properly but I’m past the point of caring today.
Our house is mostly empty and 90 percent of our belongings have already shipped east and are probably being stored as I type. I wish I could’ve had someone come in and just pack everything for me, but as my illness really took hold a couple of years ago, so my stellar organizational skills flew out the window. Haha, sarcasm there. I like to blame Big C for our piles of paperwork but if I was totally honest I’d say it’s half mine. I got sick, I became immobile, and I let it pile up. I couldn’t have movers touch all of my memories and now I wished I would’ve just shelled out the dough and said fuck it. Pack it all.
When C woke up I whined at him about how sick I was and how out of control our moving situation was and he didn’t even have any coffee in him yet. I’m selfish. I’m spoiled. I’m awful. Today is a day for berating myself for all of my short-comings. I had to stop working in our room to go out back and cry.
It’s tense here. We seem to be gouging at old wounds and I keep wondering why. Why are we such a fucking mess? Why can’t we just pack the last fucking box and drive away? I don’t know. But I do know that the house is almost completely empty and once it is then we are on the road whether we like it or not. This is a move that we want. It’s not like someone has us at gun point and are making us go…
I had to stop boxing up the stuff under our bed and cry some more. I found evidence of people’s love for me and cried some more. Letters that friends have written and stamped and mailed out to me. In this age of being keystrokes away from saying ‘hey’ I have friends that made the effort. And I’m sure I never wrote them back. Sure of it. I can jump online and tell people that I love them easily enough, and do, but I haven’t put pen to paper in years. Seeing these letters made me happy and sad at the same time. I gathered these letters and put them in my blue bag to take in the rig. I’m not sure if I separated them out to remind me I’m loved or to remind me what a shitty friend I am. Then I found a pile of cards. There was this big pink glittery card, a huge one and I already knew who it would be from. I opened it up and it broke me. Just broke me to pieces. It was from my dad. He always got me these huge cards. On the right side was what the card company wrote about me being such a good daughter and on the left he wrote ‘everything on the right side of the card is true! You’re the best daughter in the world. Love, Dad’ and that’s it. I miss him so much it physically hurts. I wish he was here so I could tell him I love him one more time and to hug him and smell the old spice.
I’m trying to make myself go into the room and finish boxing up all of my old memories. Came in and went downstairs and out front I could see this guy digging through my clothes in the box on the grass. It was so weird in that he’s in his 20’s with no mustache but an amish-like beard and he’s holding up my old size one pants and thinking. And I’m thinking ‘please don’t notice me sneaking over to the door to close it’. Such a weird day. I’m only rambling now. I’m so sad.
I saw this quote today and it sparked a memory…
I had a moment when we were driving up and I took this particular shot. I remember it. My first thought was wow, cool shot! Haha! Got it on an iPhone too. Then I was thinking ‘this is my life’. I remember that. A sudden burst of reality. I am sick. I’m still me but a whole new different me. A me that gets up at the crack of dawn to drive to a hospital, not to go to work. I’m in the chair. I’m not attending to a patient, I AM the patient. A moment of pure clarity while I aimed my phone at the sunrise.
On that day I was 5 years sick. You’d think I would have realized this already, right? I think with chronic illness comes so many different emotions, constantly changing, that sometimes you don’t know if you’re upside down or right side up. Epiphanies hit you like a brick in the face and then fade away leaving you open and surprised when another moment hits you. You really do find out who you are somewhere in the chronic journey. Whether you like it or not, you’re a fighter.
No, I’m totally not Greek at all. I was trying to be hip. Oh wait, hip’s not hip. Oh what? That movie was like big, like, a decade ago?? Haha, you know as I was writing that I thought, hey this is the funniest stuff! I do try though, don’t I?
Today is our son’s 23rd birthday. He lives a few hours above us, and due to his work schedule and his fiancee’s work/school schedule, plus the fact that they probably don’t wanna hang with the moms and pops when they do finally get some downtime, we don’t get to see them as often as we’d like. He decided he wanted to come down and go camping with his dad. Perfect! But-I told everyone I couldn’t go, my body has been weird to me lately and I didn’t think I could make it in the heat and in a tent. I know. I have the most understanding of kids. They really do rock. So that’s not the guilt, here’s the guilt-I kept Bean here with me. She’s not awake yet and Big C and I could come up with nothing that would magically make her feel better about being home with me. She got to stay up late last night and see everyone, so she knows that they’re here. She gets SO excited when her uncle K’s fiancee comes. I say she likes A more that she likes candy and I’m right.
She’s timid when it comes to the outdoors, she has a hard time walking trails and fear leads to meltdowns of epic proportions. I really wanted Big C to have some quality camp time with K and the rest of the gang. If we had her go, Big C would be spending all of his time trying to soothe her so I made the executive decision to keep her with me. Here’s the thing. She has no idea that when she wakes up everyone will not be here and what the heck am I going to tell her. I kept asking C last night, help me think of a good way to tell her. Or just not a really bad way to tell her. I still don’t know. I’m thinking I’m going to tell her that they went camping for one night, and that I really wanted her to come with me to visit Nanna. And just hope she doesn’t hate me forever. (<—- melodramatic haha)
That’s all I’ve got for now. I’m going to leave you with the cutest pic of K when he was the cutest. :0)