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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. 😉

 

 

 

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

 

 

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

 

 

 

 

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,

When Depression Stops You In Your Tracks

When Depression Stops You In Your Tracks

Ok people, my body is forcing me to be pro-active, and to be honest with you, I haven’t been pro-active at all this past year. I was so sick last night that when I  woke up this morning I was surprised that I woke up. I actually had a moment of wow-I’m here.  My body has done some pretty crazy stuff to me and I don’t ever remember being surprised that I made it through the night.  When that’s your first thought in the morning it’s time to get off your ass and kick your depression and anxiety to the side and FIND A NEW DOCTOR.  I’m struggling with my depression and I’m at a place where I feel like ‘I just can’t’ and I’m intelligent enough to know that my brain is making me feel this way.

I’ll tell you a little story about the reason I haven’t gotten a new primary care doc in the last 5 months.
[side note: my rheumatologist and neurologist are amazing.]

My father fell and broke his hip last November. He was 82. Everyone at the hospital told us that all of his breathing issues were due to that trauma of the break. Before he fell, he didn’t have any breathing problems or any other physical problems, just the Alzheimer’s. We had to wait a couple of days because he wasn’t stable enough to survive the surgery. His DNR stated ‘use all measures to sustain life’ so of course we opted to get the hip surgery done. One doc told us we could not have it done and I thought that was the craziest thing I’d ever heard. He suffered those 2 days with excruciating pain all the while looking into my eyes and mouthing words ‘help me’ under the Bi-Pap in sheer terror. My father had late stage Alzheimers. He didn’t know who I was. He had the surgery and the surgeons were blown away by how well it had gone. I told them my father is a fighter, and tough as hell. Of course it went really well. I had my proud daughter thinking cap on. Things went down hill again and he was moved to ICU and vented. We had many doctors, nurses, specialists tell us that he wasn’t going to make it and that the vent would probably not be able to come out. And it did. He made it off the vent. He made it up to Intermediary Care ward and was on a Bi-PAP. With the Bi-PAP on he still wasn’t getting good oxygen levels. He was suffering.
After 2 and a half weeks we had to decide to take it off. By now, he wasn’t opening his eyes anymore. I sat next to him and prayed the rosary for him, told him not to be afraid as he is going home to be with his family, and talked about our times together. The nurses were surprised that he was still with us on this earth and his vitals even looked good. I was hurting and told the nurse I was going to lay on the window seat, facing him and she said she’d monitor the vitals behind the desk and let me know when he was close. In all of my 45 years I have never felt so guilty for having to lay down my body during my dad’s time of death. I watched his face. He looked so peaceful and I could hear his breathing. I closed my eyes for a second and I felt like a pop in the air, I felt it on my chest. When I opened my eyes I saw this dark smoke ? waft it’s way out of my dad’s nose and it pooled in front of his face. I screamed out to my partner What the hell is that?? and the nurse ran in the room and screamed ‘you better say goodbye to your father now!!!’ I jumped off the seat and ran to him screaming I love you dad I love you dad! And he was gone. The nurse said his vitals were ok then they just dropped like incredibly fast. Someone told me he waited for me to close my eyes so I wouldn’t have to see him die.

At about the time my dad was put back on the CPAP and we were told by 4 different docs that he wasn’t going to live, and that basically we were keeping him breathing for us. That we needed to decide because that breather was keeping him alive and maybe we were being selfish. In different wording, not that harshly. It was about then that my doctor refused to fill my zoloft. Refused. I had been on it for 10 years, I have depression and have since I can remember. I was at the hospital, praying and sleeping there and couldn’t believe she wouldn’t refill it. We came home to shower and I called and her assistant said she hadn’t refilled it in a year. I was speechless, I was holding the bottle in my hand and it very clearly had her name on it, along with the last years worth of bottles as well. So, we called the pharmacy. It was a pharmacy mistake. When they got a denial to fill A YEAR BEFORE from her they sent it to my old doc without telling me and he filled it. And continued to do so for a year!! The pharmacist called my doc to explain it and I did as well and she stood firm and said. No. I will not refill your zoloft. Not even a months worth so I could find a doc who would actually treat a woman with depression with the meds that keep her head above water. I had one one day and the next nothing. I spent the last week of my dad’s life going crazy in my head with grief, and my brain chemistry was out of whack after not having zoloft for a decade.

It’s safe to say that I am clinically depressed and receiving no medication for it. It’s also safe to say that I have this weird fear? to get a new doc. I don’t know what it is. I haven’t been able to go and get a new primary care doc. There was something that happened to me the year before that just shut me down completely, when it comes to doctors. It took sheer determination to find this one, the one that wouldn’t refill my zoloft. And now I feel defeated. And I can’t be. Something is going on in my stomach that will probably require surgery to fix, so says the ER doc, and I knew way back in the 90’s that one day I might need the surgery.

I’m struggling today. I’m in lots of pain in my stomach and really have to get my head together and start looking for a new primary care. I’m promising myself I will this week.

 

AARDA and “My Autoimmune Story”

AARDA and “My Autoimmune Story”

The American Autoimmune Related Disease Association, or AARDA, launched a video series called “My Autoimmune Story” to increase awareness and education of autoimmune disease.  Actress Kelly Martin, who is a spokesperson for AARDA, started off the series with a video of her own. She speaks about losing her sister to lupus and how it has affected her. She also speaks about her role as spokesperson and being dedicated to getting the word out about autoimmune disease.  Here’s her clip. 🙂


Press Release:

AARDA LAUNCHES “MY AUTOIMMUNE STORY” VIDEO SERIES

Emmy-nominated Actress Kellie Martin Shares Her Story, Calls on Others to Share Theirs, Too

New Survey Reveals Need for Increased Awareness/Education of Autoimmune Disease
DETROIT, March 28, 2013 – The American Autoimmune Related Diseases Association (AARDA) has launched its new “My Autoimmune Story” video series on its YouTube channel with the first story contributed by AARDA’s longtime spokesperson, Emmy-nominated actress Kellie Martin.

Part of AARDA’s 2013 March is National Autoimmune Awareness Month activities, the goal of the new series is to give the 50 million Americans afflicted with autoimmune disease (AD), as well as their families and friends, a national voice and platform to share their personal story.

“Preparing and sharing our personal autoimmune stories will help build critical mass and focus national attention on a major disease category in this country that is often overlooked,” said Martin, who has served as AARDA’s spokesperson since 1999. “Imagine the impact we would have if just one percent of the 50 million Americans suffering from autoimmune disease uploaded a video… that’s 500,000 stories.”

AARDA hopes by collecting and featuring these short videos, it will help educate people about the widespread impact of ADs, the difficulties in getting a diagnosis, the family or genetic component and the financial and emotional burden of living with these chronic illnesses.

AARDA is asking Americans who have been affected by AD – patients, families and friends — to post a video response to Martin’s video, sharing their autoimmune story in a 1-3 minute video vignette (www.youtube.com/aardatube).

 

Wow, if only 1 percent of the 50 million people made a video….think of the impact of that could bring to raising awareness buy paroxetine!!  That’s an incredible amount of people dealing with autoimmune disease in this country. Does watching this make you want to tell your own story? It does for me. Here is the link to go directly to the video * click here.*  If you’re like me and you’ve never posted a video response to a video before, here is a link to a short tutorial that walks you through the steps pretty easily  * click here.*

 

Sondra DuBose’s autoimmune story. Check it out 🙂

 

I’m totally nervous about doing this but I’m going to do it. Are you ready to tell your story too?

 

 

 

 

 

 

 

 

 

 

 

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

 

Vitamin D and Me.

Vitamin D and Me.

I saw my rheumatologist a couple of weeks ago for joint swelling and muscle constrictions. I was sure my blood work was going to come back normal as it has been for the past year.

I’m in remission with the DM. My muscles definitely are stronger than they have been in 6 years. Over the past year  my biggest problem has been crippling fatigue with the runner-up being an all over weak/sick/poison-running-through-my-veins feeling. I hate that I can’t articulate it very well, and coming in last would be brain fog it’s an awful feeling. So when my muscles starting locking up on me I panicked. “What if the DM is active?”  “What if I wasted this last year by feeling sorry for myself?” (I have a whole nuther post about 2012 as a whole) As it turns out my lab results show an extremely low Vitamin D level.

vitamin-d-and-depression-01

 

photo by Life Mental Health on Flickr

I started taking a mega dose of it once a week and I can tell the difference. I had one day where I woke up feeling GOOD!! I had a really good day and of course I used my energy on cleaning this house. I didn’t go to the book store (I call them heaven for books hee hee) I didn’t take the Bean out to the park or kids museum.  I didn’t go to the mall to get some skinny clothes because yes! I have lost almost all of my prednisone weight!! woo hooo  I need to work a little harder on priorities as you can see. I felt well and found a floor to mop and a toilet to clean.

I also started Cymbalta. I think their commercial is the one that says “Because depression hurts..” and I say hell yah it hurts. It hurts you emotionally. But they are talking about body pain. Hey, if it does that too I will be a happier and very grateful woman. Time will tell. I just think that it would be so amazing if all of my symptoms were due to low Vit D. What an easy fix. That would be so nice. Maybe then I could get well enough to enjoy this remission.

Do you have any experience with low Vitamin D level? If so, drop me a comment. How are you doing? 🙂 Gimme the scoop! lol

Until next time with a possible rant 😉

 

 

 

 

 

 

Today Is World Arthritis Day, Let’s See Your Wave!

Today Is World Arthritis Day, Let’s See Your Wave!

Hey all, today is World Arthritis Day. A day of awareness for people with rheumatic disease. There are more than 200 rheumatic and musculoskeletal diseases (RMD’s). This year’s theme is ‘Move to Improve’. 

You can click on the pic above and also the globe in the sidebar and be taken to the World Arthritis Day website. There you can find out more about today, get resources for yourself or to educate your loved ones, and have an opportunity to wave for WAD!  You can submit your picture of you waving for World Arthritis Day. The photos are being put into a montage and the goal this year is 100,000 pictures. Countries are competing to see who has the most waves. =) You can see the tallies at the website.

I think this is a fun idea and we’ll be ‘waving’ here and sending ours in. I’ll be sure to post it here when we do. They’re accepting photos until October 31st, so it’s not too late to be involved.  Anyone can wave; you don’t have to have a disease, you can wave to support your friend or family member.

Waving is a small physical activity, but a big gesture for people with rheumatic disease.  It also ties in with this year’s theme which is movement, and we all know this is SO important. Now that doesn’t mean running a marathon, unless you can and um, like to run…That’s just something I never did enjoy even when my muscles were my own. But light exercise is very important to keep your muscles from atrophying.

My mantra is ‘baby steps, baby steps’. There was a time when I couldn’t walk more than a few feet, and even then had to rely on a walker. The couple of years of me being immobile really did a number on my muscles. My disease is a muscle-wasting disease to begin with, so I really need to stay as active as I can. Something I have not been so successful with lately btw, but that’s the good thing about a new day. A day to try again.

Stop in at the website. Click the counter to ‘wave’ in spirit. Let me know in the comments if you did, I’d love to see them!

Until next time,

 

 

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