Fear. It’s almost all consuming today. For the past week or so I’ve had this uncomfortable buzz in my arms. It starts on my shoulders blades and goes down the backs of my arms, then swirls above my wrists and onto the palms of my hands.
I’ve never had this type of symptom before, but I recognize the pain. It feels like being shocked from an outlet. A million years ago my hand slipped when I was plugging in a lamp, and my fingers pushed forward and made contact with the prongs when they were already part way into the outlet. A zap that made me jump and hurt like hell; electricity. That’s what this feeling is running down my arms, and with each day that passes it gets stronger. I have so many different weird things that happen to my body that I’m never surprised when something new pops up. But when it stays, I get worried. Now with this feeling buzzing through me non-stop I’m starting to get really scared.
At my last neuro visit my doc talked to me about getting genetic testing. He said the words amyloid and genetic and I remember thinking ‘huh?’. After a decade of being sick and eventually KNOWING what was wrong with me, (dermatomyositis and small fiber neuropathy) I wondered why I’d never heard these words before in relation to me. He asked if I wanted to be tested to see if my small fiber neuropathy was amyloid or genetic. Or amyloid and genetic?? I was nervous and my brain was so busy thinking that when I left that appointment I was like, what did he say?? I hate that when I do that. I should record my doc visits because I do that a lot; I get home and try and recall the conversation and yah…
It’s been a few months since my new neurologist said the words amyloid and genetic, and I said yes to the testing but I heard nothing back. I’m guessing my insurance said no to it. I figured, well the next time I see him I’ll be prepared. I’ll look it up and have questions. And time went by. Now- the buzzing arms. I looked up amyloid and didn’t like what I saw. It sounded like me. In all of my reading over the past 5 years or so, I never saw the word ‘amyloid’ anywhere, but if I did I would’ve known 5 years sooner. It fits. All of the crazy squeezing sensations, feeling like I’ve a compression stocking over my body and it’s squeezing like a snake, the immediate sensation of super-gravity; feeling like I’m being pulled into the ground with g-force like pull and having to go flat to relieve it….it’s hard to live life if you have to keep laying down. All of the weird dysautonomia stuff. I’m going to have Big C go in to the appointment with me tomorrow. I need his brain, his memory retention lol, and the moral support.
Alright it feels good to write it down. I’ll be back. 😉
Another year has gone by without me blogging. Not once people! I think if I’m going to keep writing (and I should) this blog has to evolve, because I have. 😉 I’m now 10 years in to the spoonie/chronic/wtf lifestyle and life is much different than it was in 2007. Matter of fact everything has evolved in these last 10 years. Seems like just yesterday I bought one of first cell phones that had a camera in it. My best friend made fun of me because it was really weird looking in the hinge where the phone flipped…yes, flipped. ? I’ve been feeling very nostalgic lately….
This year I’ll be turning the big five o. I was telling Big C the other day, what the hell has happened to the time?! It feels like I’ve been ripped off these past 10 years. Everyone says the 40’s are the best years! You’re kids are grown or are close to leaving the nest so you have more freedom, you’ve worked your ass off to get where you are in your career (so hopefully you’re not living paycheck to paycheck like in your 20’s and 30’s even) you might be done with apartment living in and your own home….etc. But I feel like I was robbed. I got sick when I was 39 and my entire 40’s was filled with sickness, pain, anxiety, fear, and suffering. Those things kinda put a damper on recognizing and living in the moment. It’s kinda hard to explain, but I don’t feel that I’ve grown as a person, I feel like I should be turning 40 instead of 50, but it is what it is. 😉
This last year I’ve said goodbye to a few friends after the fact, as they passed quickly and unexpectedly. We all know that we’ve got a greater chance of dying before we hit old age due to disease, but when it happens it’s still such a great shock. I miss them like crazy. It’s brought me to a place where I’m thinking about my own mortality. Would I be happy with my life as I lived it if I died today? No. So I’m making some changes. I’m trying to be more present. Trying to get a little more healthy; changing the things I can control.
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 generic cialis 5mg.
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.
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.
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.
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.
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. 🙂
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 ‘your muscles are good. your muscles are good’…it’s my mantra and it’s all about perspective.
Image courtesy of Burly Man, another Myosotis 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.
It’s a beautiful day here today. It was supposed be 60 degrees today but I think it got warmer. I sat out back for a bit today to try and get some sun on my Elvira skin. I swear I thought I heard it sizzle. Ssssss, haha it’s hard being this pale. I freckle and burn like crazy. Anyway, I brought the laptop out back and made a scrapbook page of the Nugget. One of my all time favorite pics of her standing on our lawn with her arms stretched up in the air like ‘YEAH!!!’ She’s so dang adorable. She’s also the most devious of the grandkids. She plots and plans and she has a really bad poker-face because I can always tell when she’s scheming. I guess that sounds really bad, I mean when she’s scheming to blame something on her sister, trying to sneak an extra cookie, etc. Normal 4 year old plotting and planning.
I used Under The Boab Tree kit by Marta Van Eck Designs
Haha! I laugh each time I see this picture. She brings me so much joy, that kid. Then the gnats or whatever the heck they are were dive bombing me so much I had to come back inside. I think this burst of good weather has brought all the creepy crawlies and fliers out of the woodworks.
So, I started a new blog for posting my scrapbook pages on blogger. It’s prompting me to keep on scrappin. I just love creating something, it’s a good feeling. Anyway, I found a blog that I started right after I got sick . Wow…I know I’m not a writer, like at all, and this sentence proves that but oh my. I’m reading through it and I am SO angry. Which is normal, but it’s just trippy to read. I wrote it never intending to publish it, it’s like a journal. I’m thinking about going through it and removing names and publishing it. Maybe someone who is recently diagnosed can relate to my angry ramblings. I dunno. OK, I really have nothing new to say…Hope whoever’s reading this is having a good day, and that you have sunshine without a million gnats.