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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…

 

broken links and weirdness

broken links and weirdness

It’s been so long since I’ve blogged regularly; there are a ton of broken links here that I’ll be fixing. I was scanning through earlier and I saw that one of my ‘new sick chick’ rants had a link for viagra. hahaha! I don’t know if it was a link that changed or if some bot got into my account, but if you see any links for viagra or viagra level weirdness, know that it’s not me. lol

 

 

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

 

 

Thankful Thursday

Thankful Thursday

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.

rulz

 

 

Put yer eyebrows on foo!

Put yer eyebrows on foo!

Woman Wearing Holter To Monitor Heart ActivitySo 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…

 

rulz

 

 

 

 

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!!

 

 

 

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