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Category: Autoimmunity

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…

 

Re-blogging a blog that I re-blogged and then promptly lost…

Re-blogging a blog that I re-blogged and then promptly lost…

I am laying low in my bedroom today, and after a good cry and a shitty nap, I opened my laptop to Pinterest. Someone pinned a blog post called How To Receive Better Care in the Emergency Room (with a chronic illness) and as I read it I saw that I had ‘reblogged’ this in June of this year. ?? I don’t see it here, and the site won’t let me re-re-blog it so I’m going to link it here. It’s definitely worth the read. As a new sick chick I saw my fair share of ER rooms. Everything was new ( to me ) and extremely terrifying. As you get more advanced in your years with chronic illness, you become more seasoned and the emergency room is a place of nightmares. Just kidding, not nightmares but a pretty big side order of judgement, disapproval, and suspicion. And that really stinks. No one, who has a legitimate life-long relationship with pain and the fear of premature death by disease, ever goes skipping into the ER sniffing around for meds. And because this is a practice of many drug addicts and recreational users alike, we get the fallout, we meaning the chronically ill. I will ride out the most terrifying of symptoms now, while thinking “ok, am I dying? or is this just another torturous event that I live through?” often times rolling the dice, instead of going in and being in severe pain somewhere other than my home, only to wait 8 hours and then be treated like shit. I’m almost going off on a tangent here.

Without further ado, here it is. [all of the above verbage is just my experiences and opinions. not from the post that I’m re-re-blogging.]

 

What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)

A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.

A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.

Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does, even when the need for treatment is real and immediate.

Your regular healthcare team, especially your Primary Care Physician, is by far your best bet for getting help managing a chronic condition that is spiking out of control, but sometimes the ER is the only option. When that happens, here are some tips to help make your experience more manageable: READ MORE HERE

 

 

Starting to write again. I think.

Starting to write again. I think.

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!!

 

 

 

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.

 

Johnny Depp Shows Some Love For JM (juvenile dermatomyositis)

Johnny Depp Shows Some Love For JM (juvenile dermatomyositis)

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.

 

 

Depp Rules!
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.

 

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.)

 

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