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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…

 

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,

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.)

 

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. 🙂

 

 

 

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.

 

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