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Fear & Small Fiber Neuropathy

Fear & Small Fiber Neuropathy

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. 😉

 

 

 

What’s AAAAAaaahp!

What’s AAAAAaaahp!

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.

Aight. I’ll be back. Baby steps…

 

I support rare disease day

I support rare disease day

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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. 1.
    (of an event, situation, or condition) not occurring very often.
    “a rare genetic disorder”
    synonyms: infrequentscarcesparse, 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,

Finding Out Who You Are

Finding Out Who You Are

I saw this quote today and it sparked a memory…

Last day of infusions, March 9, 2011I 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.

 

Chronicles of a New Sick Chick

Chronicles of a New Sick Chick

 

 

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.)

 

Looking Back and Moving On

Looking Back and Moving On

 

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.

Until next time,

The Positive Aspects of Chronic Illness… with a side of Poetry

The Positive Aspects of Chronic Illness… with a side of Poetry

Friendship, support, laughter, tears, empathy, encouragement, pumped-up, sometimes chided, love, celebrating, stories, mental hugs, strength, me too!s, vent sessions, pre-approved pity parties. This list could go on and on and you know what? I should make a complete list, as if it could ever be complete, a list of everything that I have gained in my life since I ‘lost’ my health.

I’ve had a few people ask me what, if any, good things have I gotten out of this whole chronic-life experience and I don’t even have to dig around to find one. The people. The women and men that I’ve met since 2006 are amazing. Amazing! The most understanding, giving people I’ve ever had the pleasure to have known. Somewhere in the mix I have become a better person myself. I wasn’t so bad to begin with (tooting own horn here) but I really feel that I have become a better person by going through this whole process.

Tolerance. I have so many friends now who are different than me.  We tend to gravitate to people who are ‘like’ us. People that we meet in our lives, say through work or friends, we make friends with the ones who are most like us. Politics, religion, city or country, rock or soul, baseball or football, coke or pepsi. It’s just the way it is. That seems kind of silly right? But it really is how we find our mates in life and the people that we trust the most.  When you have a large group of people with the one thing in common that is so extreme; disease and suffering, all of those other factors just drop off. We get to learn about people who are different than ourselves. I’ve learned that I STILL love some people after having to endure the political onslaught that rolled down my newfeed pre-election. HAHAHA oh my. You know who you are 🙂 Just using politics as an example, in the ‘real world’ i.e. pre-sickness, I probably wouldn’t sit down with someone with a zest for politics at the cafeteria at work because, hey, I would have to smile and nod while thinking ‘are you kidding me?’ And you can’t really start a friendship when you don’t have that common interest. Here’s where it gets good. When disease is the common interest, we learn to support, empathize, and build each other up for those really hard times. All of the other stuff falls off to the side and we get to know someone we might not have otherwise. Bonus! How lucky are we??? And what a way to be able to see people as a whole. Tolerance. It’s a good thing!

Third: understanding people better. I think that because of our loss, we gain a better understanding of all people. Our families that have to put up with a non-stop barrage of doctors visits, stuck in the bed times, seeing us at our base; worst and broken, fearing for our lives when we are in the hospital fighting for them. When you first get sick you think it’s all about you. Soon you realize it is far reaching and affects everyone who loves you. I can forgive myself now for being sick as it’s not a punishment. I can forgive my people who at times have been cruel though only through ignorance, and that went away pretty quickly as everyone wanted to learn all about the disease and what they couldn’t grasp on paper they got to witness first hand with someone they love. Love is the word that keeps popping up and man am I loved. And I love so strongly now, how could there have ever been another way??

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OK, I want to share with you someone I met the other day. She has RA (rheumatoid arthritis) and writes the most awesome poems about her experiences. I sent her a message and asked if I could share one here and she said, yes! She is a very cool woman who I’ve no doubt that we will know each other for quite a while. You can just tell when you talk to someone that you will be friends, but instead of shrieking that out like the child that you are (meeeeee) you play it cool and use your big person voice and whatever social skills you have learned thus far. 🙂 Don’t be afraid Donna, I’m not a creeper or a stalker. he he he he

Here’s a poem that I loved, and felt it. And am going to share it with you.

Giggles Over Tears With RA

 

Sometimes I just want to turn RA off for a while,
One little switch could make me smile.
There are other things I need to do,
And other people who need me too.
I’d produce these switches and give them away,
To anyone suffering in any way.
Just turn off all pain and flip happiness on.
It’s my perfect invention that can’t go wrong.

Check out her page on Facebook

just click the link below

Giggles over Tears with RA

 

A Guilt Free Day of Art

A Guilt Free Day of Art

I spent the day doing absolutely nothing but scrapbooking. It was SO nice. I turned off the guilt filter. The one that pours into my head every thing that I should be doing or should think about doing. Sometimes I am my own worst enemy. So when I get rid of those negative feelings it’s like ahhhh. I can just sit here and make art and memories and enjoy learning some new things in photoshop. Awesome. 

A couple of years ago I joined a digital scrapbooking site and I would get on and do a few pages and then I would shut the computer and not go back for months. It was always in the bad months when pain and immobility were getting to me mentally. I couldn’t scrap, or blog for that matter. I guess this means I’m doing a bit better, huh? That’s always a good thing. I’m going to share with you a quote page I did. It’s not fancy or anything. I like the quote and I kept the page very minimal. 

 

 

Paper by Natali Design at Scrapbookgraphics dot com
The fairy is a free brush I found at Obsidian Dawn
I’m wiped out now. It’s 2 am here and I think I’ve scrapped all the my hands can handle. 🙂 I hope you all had a good Monday. If you do any digital scrapbooking or use photoshop, drop me a comment. What’s your favorite site or tool to use? I’m only 1/4 geek, the rest is Irish. hahah
Until next time
A Day Out Amongst the Normals

A Day Out Amongst the Normals

Today was a day for doing. I had a meeting in the early afternoon and just getting ready and getting out there seemed foreign to me.  I wouldn’t say I just realized that I’ve isolated this past year, but doing ‘normal’ things and having them feel so strange is a reminder for me to get out there. I’ve bubbled myself in this house and it feels really good to get out and do anything that’s not illness related.

So I meet my brother in the early afternoon for this appointment with a lawyer.  We’re talking and after we conclude our business she asks “So, which one of you is older?” Holy shit. I just looked across the table at J and said “Uh, he is.” My brother is almost 8 years older than me. Has hunkering down in my house for a year aged me like, a decade?? I already have issues with being 45. I don’t know when it happened. I was 35 and then bam! 45. Time is just flying by. Anyway, we head back towards home to let the dogs out and we have to be at my mom’s house at 6 for dinner. I made her a journal/planner thingy and I wanted to give it to her tonight, but our printer is out of ink.  So I put all the files on a flash drive to print it out at a store.  C says lets stop at the drug store down the street, they have a kiosk there where we can print them out.  We get into the store and I swear, I’m feeling like I’ve never been inside a drug store before.  I started to get that pre-panic attack feeling in my chest. We head into the camera department and find the kiosk and I couldn’t find the slot for the flash drive. I’m looking all over the machine and instead of asking someone for help I’m determined to find the dang slot. I had to ask. Turns out it’s hanging off the machine on the end of a cord. By then the Bean is all over the place. She’s tired from being in the car half the day and her blood sugars are low. She’s trying to climb on the unreasonably tall chair they have in front of the kiosk and simultaneously asking when we’re going to be at Nana’s house for the millionth time. I spend like 5 minutes going through the two thousand files (literally) that is on his flash drive and I’m not seeing the files. I realize that I forgot to save them as jpegs. They’re in psd format and the stupid machine doesn’t recognize them. By now it’s 4:30 and we jam back home so I can process them. Photoshop crashes about 5 times and what would only take a few minutes took a half hour. I’m a total wreck trying to get these files changed while C and Bean are waiting in the car. :/ By this time I don’t want to go back to the drug store. So we stop at a copy place on the way. The guy that works there tells us the machines only recognize pdf’s and power points and I’m thinking ‘whaaaa?’ He says he can put the flash drive in his computer behind the desk and print them out for me. It’s his cashier computer and he turns the screen and starts going through what I recognize as Window’s tutorials. I’m totally having a panic attack now. Bean is floppy, like flinging herself around the store.  When C walks over to peel her off of a woman that’s working there Bean says ‘Grampa’ and the woman stops what she’s doing looks at C and says “NO WAY!!! You’re WAY to young to be a grampa!” After not being recognized as younger than 53 earlier, hearing her say that to C made me want to slap her.  Or slap him for looking so dang young all the time. The clerk behind the counter is rambling something at me about his computer freezing and all I can hear is ‘wah wah wah’ and I feel that sweat drip down my neck and I look at C and he’s looking back at me like ‘I can’t help it!’ and I started giggling. Yes, I did. Inappropriate laughter-I’m always good for that. Bean looks at me and starts laughing because I am and then it’s infectious. I just want the damn print outs and I want out of the store and Bean is belly laughing. It took forever and 27 bucks and half of the papers with the tops cut off of the pictures later and we made it out of the store.

I HAVE to get out more regularly. I felt weird today, like people could tell that I felt uncomfortable. Physically though, I think I’m doing pretty good. I guess I’ll find out tomorrow morning if I overdid it today. Totally off topic but far more interesting-today is David Bowie’s birthday.  And I look way younger than him! If you’ve made it this far through my really boring and panic-filled day you deserve some Bowie. Click here for awesomeness.

Until next time,

Rockin the Steam Mop

Rockin the Steam Mop

It’s after midnight and I really have to get to sleep but I wanted to stop in and write. I always have something to say it seems, even if it’s about nothing. I still have. somethin. 🙂

So today I gave myself to do absolutely nothing until the afternoon rolled around. And I did nothing fabulously if I do say so myself! Then at 2:00 I whipped out the new steam mop and rocked these floors out. Literally. I had the rock music blaring, alternative, and I mopped 2 levels of the house and just swept down the third one. I felt pretty good abou myself. Normally I’d feel pretty bad about everyone else here though. See, when I clean I yell. lol I’d like to be able to say “I can’t help it!” but that would be a lie. We all have control over our emotions, at least to some extent. I get pissy when I clean because I start thinking “Why the hell am I doing all this? Why doesn’t anyone else do it??? Why don’t they care to live in a ‘beginner-level’ hoarders home??? And then the screams come out of me whether I want them to or not.

“Look out! Mom’s cleaning”. They say or “stay away from your mother. she’s cleaning.”  There’s no detailed explanation needed. They know that if they come into the same room with me I’m going to start exasperatingly screaming. ‘Why can’t you put a dish in the dishwasher??? Who has a bunch of cigarette butts out front?? Why can’t anyone sweep a damn floor around here?’ and so on. I really don’t like doing this, it makes me feel like a bad person.  Drumroll please….second time in a month that I haven’t yelled at anyone. Or even just yelled out to the universe, I don’t need anyone home to yell. I have been known to yell whether the family is around to hear me or not. hahaha I told Big C ‘I think I’m finally growing up! It only took 45 years.

Until next time,

 

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