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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. 😉

 

 

 

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

 

 

 

 

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.

 

My Big Fat Greek Mom Guilt

My Big Fat Greek Mom Guilt

No, I’m totally not Greek at all. I was trying to be hip. Oh wait, hip’s not hip. Oh what? That movie was like big, like, a decade ago?? Haha, you know as I was writing that I thought, hey this is the funniest stuff! I do try though, don’t I?

Today is our son’s 23rd birthday. He lives a few hours above us, and due to his work schedule and his fiancee’s work/school schedule, plus the fact that they probably don’t wanna hang with the moms and pops when they do finally get some downtime, we don’t get to see them as often as we’d like. He decided he wanted to come down and go camping with his dad. 🙂 Perfect! But-I told everyone I couldn’t go, my body has been weird to me lately and I didn’t think I could make it in the heat and in a tent. I know. I have the most understanding of kids. They really do rock. So that’s not the guilt, here’s the guilt-I kept Bean here with me. She’s not awake yet and Big C and I could come up with nothing that would magically make her feel better about being home with me. She got to stay up late last night and see everyone, so she knows that they’re here. She gets SO excited when her uncle K’s fiancee comes. I say she likes A more that she likes candy and I’m right.

She’s timid when it comes to the outdoors, she has a hard time walking trails and fear leads to meltdowns of epic proportions. I really wanted Big C to have some quality camp time with K and the rest of the gang. If we had her go, Big C would be spending all of his time trying to soothe her so I made the executive decision to keep her with me. Here’s the thing. She has no idea that when she wakes up everyone will not be here and what the heck am I going to tell her. I kept asking C last night, help me think of a good way to tell her. Or just not a really bad way to tell her. I still don’t know. I’m thinking I’m going to tell her that they went camping for one night, and that I really wanted her to come with me to visit Nanna. And just hope she doesn’t hate me forever. (<—- melodramatic haha)

That’s all I’ve got for now. I’m going to leave you with the cutest pic of K when he was the cutest. :0)

 

AAAHHHHH!!! He was so dang cute. Now he’s an adult and he’s still dang cute but I don’t want to pinch his cheeks anymore. They’re all beardy.
Until next time,
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. 🙂

 

 

 

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 nightmare come true-speechless

A nightmare come true-speechless

I’m sick. I know this much. My headache is finally gone, it feels gone.  Is it gone?  I keep rolling over, trying to go back to sleep.  He’s shaking me. Do you know who I am???? Over and over again.  I just pull away.  All I want to do is sleep while I can.  I can’t feel the pain anymore.  You’re not making any sense!!! I can’t understand you!!! He says.  I look at him and I don’t know his name.  I didn’t know I was talking. Wasn’t I just sleeping? Why does he keep waking me up? I realize the importance of his questions.  He is frantic.  His eyes are wide. I love this man, I know this.  But I can not tell him his name.

He is trying to push sweats on over my shorts.  I’m taking you to the emergency room. I’m pushing his hands away.  Do I have clean underwear on? I’m frantic now too. I’m scared. Yet I’m worried about my underwear. I’m trying to talk but no words come out. Just strange sounds.  My daughter comes into the room.  She looks so scared, I feel so bad.  I’m scaring everyone. Stop it!  He asks me, do you know her name.  I know I have to get this right.  It’s important. I say a name. It’s a word!! I said something! But they both look at me.  Sad.  I got the answer wrong.  Now I’m trying to get ready to get in the car.  I’m freezing.

Hey Mom? I turn around real quick and I see my son.  No, I say.  Then I say, I’m ok.  The words came out of my mouth.  We are driving fast, I think I’m crying.  I know that something is really wrong, and I’m scared and I hurt now.  I feel the pain, and the air smells cold.  It’s freezing my nostrils and I can’t stop crying.

We’re here.  I don’t really know what they’re saying.  She says, can you answer me?  I open my mouth and I’m straining but it doesn’t happen. He’s pushing me through the double doors in a hospital wheelchair.  It’s triage.  More questions, more straining. By now, I’m tired.  I just want to go to sleep.  The next thing I remember is the nurse with the mask on.  It covers her mouth but it also has an eye shield. It presses so hard that it pulls her bottom eyelids down and she looks scared.  This is not good.  Needles, IV’s being poked and prodded.  I notice that there is no color.  I’m seeing everything in black and white and I don’t want anymore.  I want to go home.  Doctor comes in and I can’t talk to him either.  This is a freaking nightmare.  He has sad eyes and he is short.  Very small.  He tells me they have to do a scan and then a spinal tap to rule out meningitis.  No, I don’t want this.  He reads my mind and tells me it has to be done.  We have to go to another area to do the scan, and it feels like the room just spins around like in the old TV shows where you pull a book and whoosh.  You’re on the other side.  They have something wrapped around me and tell me don’t move my head, lay still, as they pull me sideways and I slide down onto another table.  I see people on the other side of the glass.  I can’t understand what’s happening.  I can’t hear.  Everyone looks urgent, harried.  I feel like I’m in a bad dream.  I don’t see any color, just black and white.  I’m back with Big C.  I know he’s Big C.

*Then there are two women who are pulling me down a dark hall.  There is a guy who is mocking them.  A Russian lady is talking to me as the other two are climbing under my gurney and wrapping this giant blanket around me like swaddling a baby.  They have a gleam in their eyes.  They are up to no good.  I start fighting them, pulling against the blanket trying to get out.  They will not get me in that room.  We are in some kind of a basement, and what they want to do to me-I know that if they get me in there, I will be dead.  *(I find out later, this part was a hallucination that I had)

I open my eyes and the doctor and the nurse with the uncomfortable mask are prepping me for the spinal tap.  He tells me to grab C’s arm and his and pull.  Harder!!! No push against my arm, harder!!! I am screaming.  I had one years ago, I don’t remember it hurting this bad. The room is all yellow and dark.  I want to know why the lighting has changed after everyone got on masks.  We are quarantined. Everything is so surreal. He is saying they have to be sure.  We have to wait for results.  That’s all I remember. I remember it now like you remember an awful dream.  The one’s that seems so real it gives you a stomach ache.

I woke up in a really large room.  It was bright and sunny and my Big C was there.  I’m like, what happened?  You have meningitis, he tells me.  I’m in a room that is droplet something, can’t remember the term.  But everyone who comes in has to wear a mask and gown.  I’ve got cooties.  At least I don’t have that awful feeling of surrealism spooking me out.  I can talk.  I am scared, but in the oh-my-gawd-how-the-heck-did-this-happen-way. I immediately remember the women, and the Russian, and the guy, I find out that I had a hallucination.  They had actually sent me to get an MRI and I gave the techs some trouble and was “making noises’ and kicking the inside of the machine.  I was so embarrassed!! C said don’t worry about it, you were not you and you didn’t know what the heck was going on.  I got the MRI done a few days later and me and the tech had a laugh over it.

I ended up staying in the hospital for a week.  I had meningoencephalitis, and am just hugely thankful that no major damage was done and that I am here in my bed, typing away. I’m really tired, feels like my ears are plugged and they are ringing at the same time.My brain fog is so thick you could cut it with a knife.  But I am thankful, so very thankful that God doesn’t want me yet.  There still things for me to accomplish here and I’m glad to know it.

I’m still standin. (yeah yeah yeah)

I’m still standin. (yeah yeah yeah)

Another month has gone by and lately I’ve been hyper-aware of how fast it’s flying. Markers are infusions and doctors visits. Everything in between has been an effort to make it through another day. It’s no way to live.  My depression is a strong opponent.  Each win for the other side sees me sliding down deeper and deeper.  The fact that I’m so aware of this leaves me feeling defeated. Why aren’t you doing something about it?  Why haven’t you scheduled an appointment with a therapist, the dentist, Bean’s eye doctor???  I feel paralyzed and that makes me feel even more weak.  As you can tell, it’s been a time of introspection and one that is not leaving me feeling satisfied with my thoughts.

I often wonder how other people do it. How do they do their life while battling constant illness? Do I have it tougher than everyone else? A big no to that one. I find myself comparing others that come in to the infusion center.  I infuse 3 days in a row per month; between 6 and 8 hours each day. It’s a long time in a recliner and I learned early on that sweats and comfy jammies were the way to go.  Function over form.  I never thought I would utter those words, it’s something I’ve heard Big C say eons ago when we were getting ready to go out and I was complaining about my heels pinching me.  He mentioned that guys are all about function over form.  What a pain in the ass it must be to be so uncomfortable… hahaha. We have to look good!!  Thank goodness men and women are so different.  Anyway, this last infusion I got there at 8:30 and sat down, wrapped myself in one of my throws, kicked off my slippers, yes slippers, and settled in.  With my hair up in a pony and no make up on, I was suddenly painfully aware of how frumpy I felt.  By 9:00 a few more patients came in.  Each one with a small bag hanging on their IV pole.  Dang it, why is mine so huge…  A young woman sat next to me.  As the nurse covered her with a blanket out of the warmer, I noticed her shoes.  She was wearing a pair of the cutest patent leather Mary Janes I’ve ever seen and they had about a 3 inch heel.  I look at my slippers and felt embarrassed suddenly by my at-home-in-bed-ensemble.  Her clothes were office casual and she was wearing make up, of course. I felt keenly aware of every hair that was out of place on my head. For the rest of the day I was aware of everyone coming and going. Each person seemed to be happy and have it together.  Dressed for work or at least not in their jammies, it was driving me nuts. Was I sicker than all of these people, or was it my frame of mind? Maybe I am sicker-I’m the first one there and the last one to leave. Most that come in are getting Remicade which takes around 2 hours or they’re getting an infusion of iron. My treatment is pretty aggressive. But, I know in my heart of hearts that my thinking is skewed and is keeping me down. I’m not the only one suffering, it’s time to change how I’m going to react to each symptom. I can’t let this keep me down.  It’s time to pull up my bootstraps and do something about this depression.  I have amazing family support and God on my side too.  I didn’t make any New Year’s resolutions but I am going to work on my mindset and keep in touch with those who love me.  Two biggies.

I’ll be back before the month is up  🙂

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