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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. 😉

 

 

 

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

 

 

 

 

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.)

 

My Last Visit With My Rheumy

My Last Visit With My Rheumy

 

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. 🙂

 

 

 

Found an old blog…

Found an old blog…

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.
Until next time,
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