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 rare1 re(?)r/ adjective 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. National Organization for Rare Disorders Rare Disease Day USA World Rare Disease Day, The Global Gene Project Offices of Rare Disease Research The Voice of Rare Disease Patients in Europe Eurordis Rare Diseases Youtube Channel 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 took this photo from the passenger seat of our car one morning on the way to the University Hospital upstate. This shot turned out to be our last trip up although we didn’t know it at the time. We drove up for 3 consecutive days each month so I could get IVIG and solumedrol infusions. The infusions were long (8+hours) and they really made me feel sick. The headaches that I got while sitting in the infusion chair were some of the worst I’ve had. Looking back on that time in my life it was so crazy that for the most part I don’t think I really acknowledged the levity of the situation; just how sick I really was. I went from a walker to a cane so I knew the IVIG was helping me. I was carrying an extra 80+ pounds on me from the steroids and the water retention I battled constantly. I remember being stretched so tight that my legs would actually rip open. In the moment; in all the moments over the years, I think my brain sets itself to daily survival-mode and not really thinking that far into the future of what-ifs and what-could-happens. After this last trip up I got really sick. My brain and spinal chord swelled and I ended up in the hospital. I ‘woke up’ on the third day there but it turns out I wasn’t sleeping, I was awake but didn’t know it. Big C told me that it was like I was there but not there. So when I ‘woke up’ I was sitting up and suddenly I said, whoa! It’s really bright in here! And he told the nurses I was back. When I think about it, it just seems like a dream to me. And even though it’s scary as hell, it feels like it happened to someone else. 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) AAAHHHHH!!! He was so dang cute. Now he’s an adult and he’s still dang cute but I don’t want to pinch his cheeks anymore. They’re all beardy. Until next time,
First I gotta say WOO HOOO!! I have DM (dermatomyositis) and I know that there are only 20,000 adult cases of this in the US. It’s a rare disease and in being so, it goes unnoticed where we want it to be noticed-Mainstream. If a Hollywood-ite holds up a bracelet that says Cure JM the whole world will be asking, what is JM? And the awareness train leaves the tracks. Thank you Johnny Depp. Dermatomyositis is an awful disease, but JM for kids is even worse. I SO appreciate you taking the time to hold that up for the 5,000 kids that suffer with this disease in this country. This photo was graciously lent to me by Cassandra of Cassandra’s Journey with Juvenile Dermatomyositis (JM) and Juvenile Arthritis. Thanks Cassandra. xoxo Click on the link and go say hi. See if there’s anything you can do to raise awareness of this awful disease. In this country we have only 20,000 cased of DM (dermatomyositis) in adults. For children that number is much smaller, only 5,000 children in the US have JM (juvenile dermatomyositis). There is an amazing resource for kid that have DM and their families called Cure Jm Foundation. It was started by parents of children with JM. Here’s a video from Cure JM Foundation that tells about the autoimmune disease for children. Thanks again for showing your heart to the world. It might make a big difference to these kids.
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I’ve been going through an old journal/blog of mine that I had set to private. It was basically a place where I vented to myself (lol) and also as a symptom tracker. It’s weird to read through it, I forgot just how truly awful things were. I’m posting these as I think they might help someone who’s newly ill/diagnosed/trying to get a diagnosis. I really was frustrated, sick, in pain, and flat out tired. I think it’s normal for someone who doesn’t really know what’s going on to have so many negative emotions. It takes time and repetition with those bad symptoms to not panic when you get them, to not be so angry, etc. I don’t buy that expression ‘time heals all wounds’ I think that’s bullshit. Time allows us to have experience with issues so they’re not so big, scary, awful. They become a little less. They still suck. I hope this helps someone out there. You are so not alone. (I added these in the upper left hand corner of the blog, right next to About Me.)
I’m still sitting out back drinking my coffee and thinking. In a few hours we’ll be heading up north for my last visit with my rheumy before we move. He was my second rheumy and the first doc to really show that he cared. I was SO excited when he said he’d take me on as a patient. When I started infusions it was in his hall. The infusion nurses went on and on about just how awesome he is. I really, really hope that I can find one after the move that comes anywhere near his level of professionalism and kindness. I hope I don’t cry, lol! I guess we’ll see.
You have GOT to see this doctor’s response to all the nay sayers. Hilarious + Facts = I love it. Hope you do too! Until next time,
Image courtesy of Bit Strips on Facebook. I’m hopelessly addicted to making these cartoons… We’re in the process of packing to move across the country. It’s a job that seems undoable to me at the moment. Whatever’s going on in my body makes me really, really unreliable. When I’m standing upright I have an overwhelming need to lay down. Go horizontal no matter if I’m in public or not. Haha! I’ve never laid my body down on the ground while out in public but the awful rush of the feeling of gravity pulling me into the ground is almost unbearable. Have you ever been on a ride, like a roller coaster where the ride is going so fast that you feel the g-force pushing you backwards? That’s what it feels like except it’s pulling me into the ground. sigh. I’m so completely, completely over my body doing all of the weird stuff it does. One of my specialists tells me it’s CFS/ME the other thinks the DM is becoming active again, albeit very slowly. I guess we’ll see in time if that’s what it is. For right now though, I can get up from a chair without using my hands. That sounds so simple, but it’s the major test with my rheum to check my muscle strength. I can do it!!! I can climb stairs, I can get out of bed, I can walk down stairs which was always harder than climbing them. My muscles, other than being atrophied, are doing what they’re supposed to be doing. I should be celebrating my remission!! But there’s something else going on. How unfair is that?? To be in remission and be sick as hell is supremely unfair. I just keep telling myself ‘you’re muscles are good. you’re muscles are good’…it’s my mantra and it’s all about perspective. Image courtesy of Burly Man, another myositis fighter. Don’t you? Hate it, hate it, hate it!! But it is what it is. I try to enjoy the good times with every fiber of my being. This disease and the whole process has changed me for sure but I’ve received some really good things from it too. I am aware of time and just how valuable it is. It’s made me appreciate my family and friends more. I tell the people I love that I love them all the time. I probably sound like a broken record but I mean it. Being aware of your own mortality is a little scary but it really does make you appreciate. Everything. I’m very lucky to be here on this earth, complaining about my health. haha! Whatever is going on in my body will not keep me down. We ARE going to be fully packed and ready to go by the end of the month. I’ve found a new mantra. Until next time,