D is for Disabled

This week I’m going to step back from my role as the voice of this blog. My goal as a writer has always been to inform, inspire, and to give others a chance to tell their stories. So this week, blogger and Fibro warrior Tammie Birdwell will be your voice. I met Tammie through my husband and have been corresponding with her for a few weeks. Even though she has Fibromyalgia and not RA, I asked her to write a post for me because we share the common bond of the autoimmune disease. While I am fortunate enough to not be totally disabled, I understand all too well the struggle she describes below. So now, I’m going to pass the mic to her. I hope you enjoy her entry as much as I did.

 

I have been remiss in my writing lately.  I attend school and it has been really tough lately.  I keep telling myself it’s because the classes are more difficult (which is true) but I also know that my thinking and logic are pretty broken.  For the new people reading this; know that I write from my Fibromyalgia brain.  The sentences might run on, or not.  I may use the wrong word or seem really random.  I write for folks with Fibro so I write FOR them by not trying to have perfect structure or grammar. I type what is in my brain and that seems to work.  I want to reach a large audience and I know how difficult it is for me to read long paragraphs. I very much want to get the the point, eventually.

Today I am talking about flare ups and disability.  <— there, a thesis.  Yes, I also try for the occasional giggle.

I am writing this today for two audiences.  I am teaming up with Alyssa Pierce, a new friend that has RA.  Fibro warriors have a lot in common with people that have RA.  Hell, we have a lot in common with anyone who is in pain all the time.  No one else can understand and for that I am glad, I wouldn’t wish this on anyone.

Now, I also like to keep my paragraphs short and to the point, this is a Fibro thing.  So once again, structure suffers a little bit, but I want everyone who reads this to find it easy and informative read.  I wanted to start this post with some information about Fibromyalgia flares.  I know that warriors with RA also flare up.  What I don’t know is if it is like our flare ups, or if it is different.

See, last week I was having a huge flare.  I was miserable and I couldn’t think in a sentence, let alone speak in sentences.  That one is what I call my thinking flare, it is usually accompanied by some burning on my skin and a feeling like my hair is growing.

I have another flare up and this is the one I call my physical flare.  This is what I am suffering right now, since yesterday.  It took me several tries to get out of bed.  My hands feel like they are going to blow up at any second.  My head feels the same, my vision is blurry, and I am working up the energy to take a badly needed shower because, yes, I put them off because they make me so tired.

It sucks so bad to get out of bed when it hurts to move.  However, a bit of advice?  I learned that staying in bed unless I am sleeping or getting lucky is not a good idea, no matter how badly you want to stay. It is called sleep hygiene and you have to force yourself to stay out of bed.  It sounds like torture but it is not.  It takes a while, and some nights I don’t even try, but it does really work.  I break the rules at times and take a nap but only if I am falling asleep where I stand, which brings me to the third type of flare.

This flare up is so intense in involves every muscle, nerve ending, ache, pain, and a feeling like your skin is on fire.  Those flares are so intense the only thing to do is lay down, you are not capable of anything else.  Which brings me to my next topic…  disability.

I belong to a lot of groups on Facebook and every single day I see people getting really excited because they have been given disability [benefits].  I am happy for them, but I thought that I could do this.  I thought that I could accomplish something.  I wasn’t wrong, but I am disabled.

I was a heroin addict 15 years ago for about three months.  Luckily I stayed off opiates easily after that, even with Fibro.  However, I had to come out to my mom and everyone else I loved.  I had to say, “I am a heroin addict”.  I thought those would be the worst thing I would ever have to admit about myself out loud.  I was so very wrong.

Having to say yes, I am disabled, I need help.  I need some income. That was the hardest thing I have ever admitted. Saying  “I am disabled” still makes my stomach hurt.  My family has suffered greatly because I am no longer able to work.  It took 4 years to get a diagnosis.  I know that I will get disability this time.  My heart is broken.  I was a dancer, a ballerina.  I was a cheerleader in high school.  Now I can barely get into the bleachers to watch my son be the drum major.

It is interesting; on my paperwork for disability they asked me where I hurt.  I laughed and laughed.  Everywhere, I answered.  Then it asked me several more times, in different ways, and every single answer was everywhere and always.  So, I even got to laugh a bit while I was filling it out.  Knowing though, owning, the title of disabled is a crushing blow.  I know that I am.  I knew that I was a drug addict.  This does not make it easier to say.

I used to work at the PA Renaissance faire putting women into corsets.  I loved it.  I loved making women beautiful.  I also had to quit there.  I want to go and see all my friends that still work there and I am wondering if one can rent a HoverRound.  I couldn’t even make it to the front gate without needing to rest.

These things could all bring me down.  These things could all make me want to quit, to give up. However, these things only make me want to work harder.  No one, and I mean NO ONE and NOTHING, can change the way that I live, but I am the only one in charge of my brain.

I choose happiness over misery.  I choose to laugh when I know I need to.  I choose life, no matter that I have to crawl sometimes.  I choose to live my best life.  I also choose to be happy.  You have the power, in your brain, to control your own destiny.  It isn’t gone, nothing important is gone.  It’s simply different and we just have to learn to love ourselves when our settings are on “different”.

It is so damn hard to try and explain what it is like when your brain and mouth refuse to work together.  I have worked for years to make my sons and my husband understand.  They finally do.  Want to know how I made that miracle happen?  I stopped trying to explain myself.

I didn’t hide anything (except the pain, we all do that) I just existed.  I stopped trying to make them understand and I started to live my best life in a whole new way.  I interacted with them and if I struggled to find words, I didn’t explain, I just make up words.  They will eventually learn your language. This new method, the one where we exist and let them watch, works.  It takes a lot of patience and a long time, but you will get there.  If I can do it anyone can.

For my words, when I lose them, conversation goes something like this :”Are we going to the field thingy to watch Rudolpho Hans play running ball?”  Which translates to, “Are we going to the stadium to watch the Saints play football?”  I know that first one was mostly inane gibberish.  However, I got A sentence out.  They will start to learn your language, I promise.

This just happened…  an example of my speech issues: in a text to my husband, “Except smokes.  The shenanigans cigs.  No… Monrovia..  dammit.. Morgan…  Fuck it.  Those cheap ones” That was my text to my husband.

I know that I should quit…  that isn’t why I shared this.  I shared this because it is real life..  My life…  Maybe yours too.  The cigs are Mavericks, I finally thought of it.  I really have to laugh..  this is funny.  I should write children’s books, I am excellent at coming up with fun, meaningless, quirky words.  They are easier than regular language most people use to communicate.

Warriors and new friends with RA, it has been a pleasure to write some words for you all, maybe I can help a couple people.  Remember, always, LIVE, LOVE, and FIGHT.  We got this.


NatraCure Product Review, Part 1

RA is merciless when it comes to feet. When my disease was active my feet would become twice their size, which I tended to not realize until my socks started cutting off my circulation or I couldn’t get my shoes on.

Despite my remission and the overall improvement in my health, my feet have continued to be a source of never ending frustration, with burning and throbbing sensations becoming a constant. I can’t say I’m surprised though. According to my Fitbit, I’m averaging 12,000 steps on a slow day and as high as 15,000 on a normal day. As an elementary school teacher, I rarely ever sit down at my desk. This is all before yoga 4 times a week and the occasional hour on the elliptical or doing Zumba or running at the park. I take every opportunity I can to be active because I never know if/when my RA is going to come back with a vengeance. Regardless of how much I try to take it easy, my feet aren’t appreciative of my gesture.

I’ve tried ace bandage wraps, ankle braces, athletic tape, and Epsom salt soaks. I’ve tried wearing only one specific shoe to work and wearing nothing but sneakers on nights and weekends. There hasn’t been a high heel in my closet in over two years. These things have definitely helped manage the discomfort level, but I was still searching for something more immediate and effective.

A few weeks ago a representative from PolyGel contacted me to ask if I’d be willing to write some product reviews. PolyGel has a line of natural orthopedic gel products under the name NatraCure. Until recently, these products were only available through the medical professional market, but PolyGel is now makeing NatraCure products available to general consumers. While the line contains products to help with pain in many areas of the body, I requested to try products for my feet.

Today I’m going to review the Cold Therapy Socks. But first, I’d like to point out that I wasn’t paid to write this review. PolyGel did send me the products, but it was with the agreement that I would be completely honest with my readers.

The socks have three separate compartments and come with two removable gel packs per sock. One large gel pack is meant to sit below your foot. The smaller pack can either go in the pocket over your toes or in the one behind your heel.

NatraCure Cold Therapy Socks. $20.99. natracure.com

NatraCure Cold Therapy Socks. $20.99. natracure.com

You place the socks (with the gel packs in place) in the freezer for at least 2 hours. The socks are not meant to be walked on, so I grabbed a book and headed to the couch to relax.

At first I was skeptical that these would work, because cold therapy has never really been my thing. I prefer using heat to manage my RA pain because I’m extra sensitive to cold temperatures. I put the Cold Socks over my regular pair of socks to play it safe. Honestly, I probably never would have kept them on if I hadn’t, but this is a matter of preference. I wear a size 7 1/2 shoe, and the small/medium size socks (the blue ones shown in the picture to the right) fit perfectly. They hug your feet just tight enough to provide some compression without you worrying about cutting off circulation. Almost immediately I began to feel relief from the burning.

I kept the socks on for as long as I could personally tolerate, which was about 20 minutes. They were still cold to the touch and could have continued to provide relief, even though the gel packs were not as frozen. By the time I removed them, the throbbing in my feet had stopped completely. There was no aching, and I’m sure if my feet had been swollen, the socks would have helped with that too.

I’ve used the Cold Therapy Socks every night since receiving my package and I’m pleased with the results. The effects are not permanent, but I’ve definitely noticed an improvement in how I feel every evening. Plus, I don’t wake up with achy feet anymore, which always happened on the mornings after my super active days. So while I wouldn’t call the Cold Therapy Socks a miracle cure, they’ve definitely become my favorite way of treating my wounded feet. I told my mother I’m going to buy her a pair for her birthday.

Considering how much money I’ve been spending on Epsom salt and medical tape and whatnot, I’d say the $21 investment is worth it. Plus, the socks give you a chance to relax, and who doesn’t want an excuse for that?


What the Stomach Flu Taught Me About Autoimmune Diseases

In an unfortunate twist of fate, I succumbed to the stomach flu this past Sunday, the night before I was supposed to go back to work after spring break. I’ll spare you the grotesque details of my illness, but let’s just say that it’s the worst I’ve felt in a long time. Thursday was the first time I was able to eat more than 6 saltine crackers and a banana in a day, but even now I can’t manage my average food intake.

I’m not someone who can take a day off. I’ve gone into work with head colds, laryngitis, accident injuries, and terrible RA flares. A workaholic, if you will. But this time, I couldn’t manage much more than to lay on the couch all day and sleep for 16 hours at a time, despite how much I desperately wanted to get up and answer my work emails. I didn’t have the energy to open a laptop or read a book. For the first time in a very long time, I went two whole days doing absolutely nothing. I couldn’t even pull that off back in February after my accident.

Sometimes I think I need these kinds of things to remind myself how I need to slow down and become more aware. I feel great now in terms of my RA. But the 4 days spent in bed were driving me absolutely insane. If a stomach virus was slowly killing my soul, then clearly I’m out of touch with the reality of having an autoimmune disease. If anything, this is one more reminder to appreciate how much I’m capable of doing at this point in my life. I’m not confined to just merely existing like so many others battling health issues, and while vomit is one of my worst fears ever, I’ll count this experience as a humbling moment.

 


Yoga and My Injury

yoga-241614_1280I mentioned a few posts ago that I was in a car accident and was worried that my RA would jump out of remission. Since, then I’ve been working hard at physical therapy to try and feel “normal”again, or at least get back to the point I was prior to the accident.Up until last week or so the pain in my neck and lower back was still bad enough to ruin my mood regularly.

I’ve been commiserating with a friend over our various aches and pains: she broke her back years ago and has  foot problems, and I’m a health mess in general from my RA and now from my accident injuries. She convinced me to start taking yoga with her. There’s a new studio a 15 minute walk from my house and they were offering a new student special. She brought me the class schedule. “We’re doing this. We need to,” she said.

Given my track record with yoga, I didn’t think this plan was going to go very smoothly. Doing yoga in front of my TV was always torture enough. Was I really going to attempt Downward Dog with my old lady joints in front of other human beings? Could I keep up with the pace of the class in general?

We signed up for our first class, Yoga Basics, this past Saturday. Quite honestly, if my friend hadn’t pushed me to go and she hadn’t been sitting on the mat next to me, I probably would have never done it. But I’m glad I went.

I walked out of that first hour long session feeling euphoric. I considered the possibility that I was only feeling a placebo effect, but I’ve gone back three times since and I’m still floating on a cloud after every session. No one there is judging my old lady joints. I’m stretching out muscles I forgot I had. And even though it’s only been a few days, I’m already beginning to feel stronger. I managed to do a plank for 30 seconds Monday night without falling!

I’ve experienced other benefits from my short time as a yoga student, but that’s for another day. What matters most is that I’m able to function normally again. No stabbing pain in my neck as I lean over a child’s desk. No back pain when I need to stoop to pick something off of the floor. I’m feeling stronger than I have since I was 18 years old. Best of all is that my creaky joints aren’t bothering me much anymore, except on rainy days. I’m still not letting the RA win.

 


Autoimmune Awareness Month

aarda.org

aarda.org

Rheumatoid Awareness day is in February, but the entire month of March is dedicated to all autoimmune diseases. RA sufferers are not alone- 50 million Americans are suffering from one (or two or three) of the hundreds of known autoimmune diseases out there. Compared to other diseases, there aren’t many dollars going into autoimmune research. So let’s keep all of those people in mind this month and try to educate anyone willing to listen. That’s how change happens.


RA After Bodily Trauma

To sum up a long and complicated story, I was in a car accident at 3am on Monday. My airbags deployed. My car was totaled. A trip to urgent care on Tuesday ruled out spinal damage, but I did get a diagnosis for bad whiplash. I’m taking muscle relaxers that make me feel groggy and bleh (which is the most accurate description I can muster at this point) so I don’t feel like writing much this week.

Since the accident, I’ve noticed two things. One being that I could potentially have Raynaud’s disease. It was -12 degrees with the wind chill factor the night of my accident. By the time the car was towed away and I was done talking to the cops, my feet were in so much pain that I couldn’t walk. The defrosting period was even more painful. It felt like someone was stabbing my feet repeatedly with a knife, and no amount of moving or sitting or rubbing my feet helped.

My second observation is that after Monday morning, my joints started feeling hot and swollen. I’m pretty sure I’ll be having a full blown flare soon. I’m wondering if the crash pulled me out of remission, since people often say that they were diagnosed with RA after a traumatic injury.

I made an appointment with my rheumy, so we’ll see what happens. In the meantime, I’ll be parking myself on the couch for the weekend.


Having a Conversation

I love my rheumatologist. I trust his advice and the decisions he makes regarding my treatment and often don’t question his reasoning behind those decisions.

But before finding him, I was subjected to the ignorance and stupidity of many doctors. I went through 5 general practitioners before I took it upon myself to do Internet research and make a first appointment with my rheumy. DrugFacts-MedicationProbThe scary common theme among those doctors was that they were willing to write out prescriptions for just about any reason. There were prescription fish oil tabs, NSAIDs, aspirin/codeine concoctions, antidepressants, and a slew of other drugs that, in hindsight, make my liver do flips just thinking about them. But ya know what? I never questioned them. I blindly trusted the “MD” after their names to mean that they were automatically right and that I shouldn’t ask questions.

January 26-February 1 is National Drug Fact Week, and I’m taking a moment to remind you that you should start a conversation with your doctor about your medications. Here are a few statistics:

  • 700,000 ER visits each year are from incorrect medication usage (Source: AmericanHealthCare.com). I don’t know the specifics of this fact and whether or not this includes people who take shared prescriptions, but it’s worth mentioning that you should never take any drug that hasn’t been prescribed to you. Shared prescriptions don’t take into account your weight, age, level of health, and drug interactions. Assuming that you’re taking your own prescription, ask your doctor questions. Ask him to repeat instructions (Do I take this daily? Twice daily? On an empty stomach? Should I not take it with orange juice? What are possible side effects?). Don’t rely on the label on the bottle to tell you what to do, and don’t feel ashamed or worried that you’re wasting your doc’s time.
  • 2/3 of all doctors’ visits end with a prescription being written (Source: TalkAboutRx.org). Clearly, I’m not telling you to develop a distrust for your doctor or that you should refuse to take your medication. But this is why a conversation is needed. Make sure the prescription that you’re being given is truly needed and not just his way of dismissing you from his office.
  • On average, at least one drug is recalled in the US each month (Source: Reuters.com). My mother was on an RA drug DrugFacts-Recalls2called Bextra for years before it was taken off the market in 2005. She claims it was the only drug that ever worked for her and controlled her pain, so of course she didn’t care about the possible side effects it could have. However, it doesn’t hurt to occasionally do some research on your medications, just to see if they’ve been under scrutiny lately. American Recall Center has a wealth of information about drug safety and current pharmaceutical lawsuits.

I’m not condemning all doctors or prescription drugs. I’m thankful for the quality of life that my doctor and medication have given back to me since my diagnosis. But I make sure to read up on every prescription I take, and I urge you to do the same.

 


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