Monthly Archives: December 2013

LOLFR

Ever heard of the hashtags that go “______ problems”? I’ve heard of “#firstworldproblems” and “#richkidproblems” and I also enjoy utilizing “#nannyproblems” occasionally. Well I’m going to create my own, maybe it exists already, who knows…I call it “#sickgirlproblems”. And here is my first contribution….

When spending 2 hours sewing patches all over your favorite old pair of jeans makes more sense than buying new ones- because a.) you already KNOW that that pair won’t irritate your skin any more than it already is, b.) you already KNOW that that pair will fit you on your most fat/bloated day and c.) you can sew patches in BED. #sickgirlproblems

LOLFR (laugh out loud for real) (I know, I’m a dork 😛 )

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For real?!

Tonight, I am in too much pain to read. I never thought I’d see that day come. Reading is usually my solace when I don’t feel good, I can escape to somewhere else and not think about the pain, and I can occupy many many hours that way. However I just can’t do it tonight. Weird.

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Christmas

I think this was the first Christmas in many many years, perhaps ever, that I felt like I didn’t feel well enough to enjoy the holiday…but I can’t really put into words WHY I felt that way. Christmas eve hubby and I went to Christmas eve service at church, which I have to say is usually one of my favorite parts of the holiday. I love getting dressed nice, and experiencing the whole church filled with happy singing voices; I love the candlelit singing of Silent Night to end the service. I just love it. But this year I was uncomfortable in my clothes, with the fabric irritating my skin; I did not feel “pretty”, and I was in a significant amount of pain. After church we all went to dinner, where the food made my stomach sick and I was still in a bunch of pain. Christmas day I slept in a little, and spent the morning in bed reading which was nice since I was really hurting (are you seeing a trend here?), I did a little bit of cooking (another favorite part of the holiday) and headed off to my grandmother’s house. There we ate a delicious meal and everything was ok, but after that things just went downhill. I “crashed”, as I tend to call it…which essentially means that what little energy I had disappeared instantly, and my pain went through the roof. So I parked my butt on the couch until all gifts were opened, and then I retreated home to my bed where I proceeded to have insomnia and was up half the night. 

I guess I’m just not “feeling” the holidays this year. I was too sick to do much decorating or preparing, I got the bare minimum done as far as shopping for gifts is concerned, and I was just generally too exhausted and in too much pain to enjoy the whole season. 

It’s whatever I guess…

What does make me a little sad is that since I got engaged a year ago on New Year’s Eve, I wanted to go with hubby to the spot where he proposed and celebrate New Year’s watching the fireworks just like we did last year…but I know there is NO WAY I will feel up to that. :[

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I hate doctors…

Sometimes I love them…but most of the time I HATE them. Your doctor is supposed to help you, to be your savior; they’re supposed to believe and want to help you feel better. But sadly, with a diagnosis like fibromyalgia, myself and many others like me find ourselves constantly at war with our doctors. It is a constant fight to make them believe you are
sick, or if they already believe you then you have to fight to remind them that not EVERYTHING is fibromyalgia.

This morning I cried my eyes out. I can’t count how many times I have walked out of a doctors office sobbing. It’s embarrassing and so so SO frustrating; people look at you like “what the heck is wrong with her?!” Or with those sad pity eyes that just make everything worse. And the worst thing is sitting there in the office, in the stupid gown that always manages to show my ass no matter what I do, and sobbing to the doctor that I can’t continue living like this, that I can’t cope with this pain anymore, and him just sitting there and looking at me with boredom in his eyes; just looking at me with a look that says “stop being so dramatic” and telling me to “JUST DEAL WITH IT”.

So this morning…I finally got to see an orthopedic surgeon about the torn tendon in my hip (after over 5 weeks of waiting and a really annoying mix-up) and I had such high hopes for him to give me a plan to make my hip feel better. I was expecting to hear instructions to stop walking on it, and to schedule a surgery to repair it. What I heard instead was “it’s no big deal, it’ll get better eventually. It’s basically like having a scratch on your skin, I wouldn’t do surgery to fix a scratch because it’ll just get better.” And when I explained that I was not happy with that plan, I was told “I’ve never seen someone complain of this bothering them for 20 years, so it DOES get better eventually”, and “your fibromyalgia makes you extra sensitive to pain, so when it feels awful to you it’s really not that big of a deal”. When I attempted to explain the massive amounts of pain this is causing me, and how much it is affecting my ability to function in my life he suggested that I go to pain management…after id already told him that I’m on 40mg of OxyContin a day and it’s not touching the pain. I refuse to accept that more pain medication is the answer, that is only going to mask the symptoms, not FIX the problem.

I can’t even explain how mad I was (and still AM)…I cried and cried in front of him, and he sat there and just looked at me, and told me he’s sorry but I’m just going to have to deal with it. That it’ll get better EVENTUALLY.

I’m NOT dumb, I know this crap won’t heal itself…especially not if I follow that jackass’s instructions and WORK OUT.
I can’t handle any more doctors blowing me off. I can’t cope with this pain.
I just need someone to LISTEN for once. I need someone to BELIEVE ME. I’m not making this up; I’m not exaggerating.

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Warning: WHINING zone!

 

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I don’t complain much, or at least I try not to…but here I will not hold back, so you have been warned!!

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December 11, 2013 · 2:54 am

A little history…

I don’t remember what it’s like to NOT be sick. For as long as I can remember I have always been different; as a kid I got tired much easier than all my friends, I ached a lot (we called them growing pains until we knew the truth), I needed a lot more sleep, I was moody all the time.

When I was 12 years old my mom was diagnosed with Fibromyalgia, and she immediately knew what was wrong with me, so she asked her doctor to take a look at me, even though she couldn’t see me on the record since I was a minor and she wasn’t a pediatric doctor. The doctor performed the trigger point test to diagnose fibromyalgia, and told me that I tested positive as having it, but I needed to wait until I was 18 to see a doctor on the record. Which was frustrating, but fine…I’d been living that way my whole life so far, I could keep on living that way…until one morning, when I was a senior in high school, my carefully built semblance of normalcy came crashing down.

I woke up one rainy January morning, not feeling so great…I went to 1st period, and essentially collapsed half-way through. I dragged myself to my car, and home to bed…where I stayed for close to 24 hours. The problem was, when I tried to get back out of bed, my legs didn’t work…they simply could not/would not hold my weight. It took close to 2 months of going to high school in a wheelchair, pain meds, sleeping a LOT (including during the majority of my classes), and gradually taking a few more steps every day before I was finally able to walk and function relatively normally again.

And I have never been the same.

Over the last 6 years since I turned 18 I have racked up quite a few diagnosis’s; fibromyalgia, chronic fatigue syndrome, degenerative disk disease, psoriatic arthritis, bipolar disorder (that’s a story for another day), hypothyroidism, restless leg syndrome, benign hyper-mobility syndrome, chronic migraines, chronic ovarian cysts, costocondritis, and anxiety/panic disorder. I think that’s everything!! It’s too many things to remember!

Don’t get me wrong, I have had good times; I’ve worked a full time job, that involved 8-16 hour shifts on my feet, I graduated with a Bachelors degree and a pretty decent GPA, I trained in Tae Kwon Do for close to 12 years and earned a 4th degree black belt and an instructorship title, I met my husband and married him after dating for 3 1/2 years.

But I’ve also had really bad times; I’ve sat down on the floor of the grocery store and cried, I’ve curled up in a ball and cried more times than I can count, I’ve sat in my car and cried because it took more energy than I had to get out, basically…I’ve done a LOT of crying, and sometimes I don’t know how I made it through the day…but I did.

As I always say (when I’m feeling positive that is…) “I’ve done it before, and I’ll do it again”…

 

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