Eczema, Fibromyalgia, Chronic Depression & ADHD? Anything Else Want to Join This Party?

Let me tell you something funny. I thought I knew pretty much all I needed to know about Fibromyalgia. I thought I knew all the pain and exhaustion and crap that I was going to know that came with MY Fibromyalgia. Pretty funny, huh? Obviously I was naive and completely missed the chapter about the skin and the effects that FMS has on it. I admit it… I’m a dumbass. I have spent the last 3 days… one, two, three and let’s count today so this is the fourth day… itching like a dog dipped and rolled in fleas. If you could see me now… I have hives all over.

Pain+crazy itchy=psychotic mom. My dog Tani, also has some kind of crazy itchy thing going on. I want to do what she does. She literally walks and randomly throws herself on the floor, I mean this, THROWS herself on the floor and “THUD!” rolls to her backside and vigorously wiggles back and forth to scratch her back. I’m jealous. I want to do this. I know I sound crazy, but she looks pretty content when she’s done.

I gotta be honest, I think I’ve been pretty okay to live with. I haven’t thrown things around the house or screamed for no reason or even cried like there’s no tomorrow (although I’m seriously on the verge). I have pretty much just sat on this couch and played Facebook games on my computer. Non-stop. It’s the only thing that can distract me enough to keep me sane. Thank goodness there’s a new game to play as well… I can’t read or Twitter or watch TV. I can’t sit still or barely write this blog post. I’ve been trying to write it for the past 24 hours. Idle time for more than 10 seconds and I am scratching like crazy. This seriously SUCKS. I mean, I am ready to take any drug offered to make this stop. I am anxious and stressed and frustrated and exhausted all at the same time… AND in pain. How is this even possible?

If you could see me now….

It’s Wednesday and I just finished this post. I hit save and the page exploded before my eyes.

The login page comes up and I login and I come back and … it’s all gone. All my edits are gone up to the point where I had last saved. What do I do? Do I give up and just scream? Do I say eff it and just leave the post yet again for another day? (yes that is EXACTLY what my first reaction is) or do I suck it up and just finish it?

This is me sucking it up… so be nice! hahahahahaha.

So! It is Wednesday (I know I just said that, cut me some slack here) and I am still itching away… I found out the problem, I’m just not sure I believe it. On Friday, like a good patient, I had sent an email to my chronic pain doctor. On Monday he gave me a call and we talked about what the issue might be. He decided it wasn’t a reaction to my meds (good thing). He also thought it would be  a good idea for me to see my Primary Care Physician (PCP). I had a feeling this was going to happen. I still find it super cool that he even calls me to check in with me. Kaiser has such a bad reputation, the fact that he calls me, and first thing in the morning, and then tells me why he didn’t call me on Friday?? Awesome! The people in the Chronic Pain group…. they are the best! I can’t recommend the Level II Pain Program enough!!

I went in to see my PCP and she figures it’s chronic hives… I’m not so convinced. She’s thinking and asks me if I want to go on steroids. Hmmmm, how about NO! Prednisone? Hmmmm… HELL NO! Then she tells me she is going to have this “Roving Dermatologist” check me out. Cool. I’m cool with that. Sounds interesting and a good idea. We wait. I have my husband and daughter in the room with me. We wait. She comes in the room with my PCP (I just like saying that… funny how that acronym just happens to be the same as, well…. you know). Anyway, the Roving Derm and my PCP start talking and the Derm starts looking at my hives and asking me the questions, “when?”, “how long?”, “anything new?”, she wants to see where all the hives are and then she keeps asking me … literally over and over and over again… “did you use any new lotions?” me: “no” okay, “but, have you used any new lotions?” me: “ummmm, no”. It was almost as if she didn’t believe me. I guess she gave up after she kept getting the same answer. She then does this doctor speak with my PCP and pretends my family and I are not in the room. Riggghhhhhtttttt. This 6 foot black man is not in the room. I am thinking… “I wonder if I pinch her, will she notice?” and then I think… I better not, the consequences of that are probably not very good… and just as I finish with my thinking, the doctor bubble breaks and “PING!” we are all in the same room again. My PCP gives me my prescription and we are on our way. I like my PCP, but it’s always kind of a strange visit to me.

Steroid lotion and cream and Atarax. I start day 2 of this lotion/cream twice a day schedule along with an Atarax pill and so far it’s not really working, but I’m giving it a chance… because that’s the sort of girl I am! I don’t like to take the Atarax during the day. I have to get my work done so I will wait until it’s time for bed. This means I’m itchy all day… all I’m saying is… you don’t want to irritate me… you don’t want to irritate the irritable, right? Pass it on.

Okay and here’s the thing… Eczema, Fibromyalgia, Chronic Depression and ADHD?? Good damn thing I’m married!! I’d never find a man with all that shit! What I’m sayin’ is anything else want to join in this party?? You better come quick!! I’m closing the door to this gosh darn party, I’m lettin’ the door hit ADHD in the ass as it closes! This is bullshit!! I did not sign up for this, but I’m handling it. I’m takin’ it. I’m living with it and I’m not going to sit down and cry my eyes out. Try me, damnit!! Okay, maybe some days I’ll cry my eyes out… but not EVERYDAY!! These things do not make for the end of the world… they cannot kill me and I won’t let them kill my spirit. Right? Are ya with me?? Good!

I will say this though!!! 2000+ hits to my blog?? That is WAY TOO AWESOME!! When I first started writing this blog I never ever in my wildest dreams (okay now I am going a bit overboard, I don’t really dream about my blog, but you get my drift) thought that I would have this many folk read what I’m talkin’ about. I love the fact that people understand and get what I am talkin’ about.

You all have a wonderful and blessed day!! Leave your comments, I love to read them!

Stay super duper cool!

PS. I was chicken, you would have pinched her, right? :)

Fibromyalgia and Doing “IT ALL”… What Do You Think?

Okay… here’s the thing. I’m just going to say it. I don’t get how people with chronic pain manage to do “IT ALL”. I am sitting in the kitchen that I made a mess; because I don’t want to sit at the desk that I left a mess; because I don’t want to sit in my bedroom that I left a mess. Honestly, there are not that many rooms left in the house. My son’s room smells like something or God forbid someone died in. My daughter has friends jumping around, hopefully not breaking the furniture in her room, and it is extremely loud in there so I wouldn’t be able to concentrate. My one sanctuary room, “the living room” in a very deep booming voice), I kind of have not allowed myself to go in so I don’t ruin it… you know the room I’m talking about. When you were growing up, it was the room that had the plastic covered furniture in it. The room no one was allowed to actually enjoy themselves in. Only grown ups were allowed in there, and only on special occasions. Sooooooo, when I grow up, I will let myself go in there! Until then, it’s just for special occasions… and I haven’t yet forced the plastic over the furniture… don’t push me, I might just go there! (if I was reading this out loud to you I would say “

Back to my topic… I can’t even stay on topic, much less do “IT ALL”, which of course IS my topic! whew! This is starting to confuse me (which as you know is not too difficult to do…). So! Since the holidays, I have had one hell of a time finding time to

  • tweet,
  • blog,
  • work my full-time+ job,
  • eat right,
  • spend time with my family,
  • exercise/ do my physical therapy,
  • read,
  • research fibro,
  • spend time with God (which should be #1),
  • spend time with family/ friends
  • paper craft

Obviously the must do’s always get done because they have to. Once prioritized, I thought it looked like this:

  1. work

Then I sat here for a while… and I decided I would rearrange things a bit. One priority just sucks… and it’s selfish and stupid, not to mention it’s not much of a life and I refuse to make that my life (did you say that in one breath?)! At one point in my life, that is actually how I lived… yes, I know, it is very sad, but true. I refuse to let that be the case now!

So, here’s what I will work on… AGAIN (because I keep forgetting and hopefully this time I will pay attention!): IN THIS ORDER…

  1. God
  2. My health
  3. My family
  4. My job
  5. My papercrafting

In between those things, I will tweet and blog. I will do my best and I will accept I can’t do it all. If I’m successful, I will get less and less of those looks from my husband where he’s shaking his head like I’m crazy because I’ve just taken on the world. If I’m successful… I. Will. Be. Content. Because I am content, I will have less flare ups… you see? I do get “IT”, I just have to accept that I am not Wonder Woman and I can’t do “IT ALL”. Those are two totally different things. But seriously, if I was Wonder Woman… I would totally dig that plane she had.

What do you think?

Thanks for reading. Stay cool!

i have faith. i will overcome this disability!

I am disabled.

Wow.

I am a proud owner of a handicap placard.

Woot! Woot!

Is that how I am supposed to feel?

Yeah! I get preferred parking now when I go shopping! Hell yeah!

Let me tell you how it really goes down…

In the morning when I get up

this is how i feel…..

i wake up and

i feel tired and

in pain and

i slowly get out of bed after about 30 minutes (if i’m lucky) and

i get my laptop so i can work and

i sit down on my bed and

i start my work day and

my beautiful husband brings me coffee and toast and

i take my medication and

i drink my coffee and

i eat my toast and

by noon i am exhausted. i am already exhausted!!!

my brain can hardly focus and

i’m pretty damn frustrated because i know that it wasn’t that long ago that i was damn good at my job and seriously?

this fibro fog sucks!

i attempt to eat lunch, which these days ends up being my one real meal of the day after my toast and

then i attempt to work again and

i end up playing facebook games and

twittering and

now it’s dinner time and

i sit with the family and

i’m not hungry so we talk about our day and

after i go back to bed and

i attempt one more time to work and

again fibro fog and

again facebook games and

again twitter and

now it’s time for my night time meds and

i can’t sleep so i write my blog and

at the end of the day

this is

what i know for sure

regardless of anything else

i am blessed. i. am. blessed.

i am alive and

for today, i am able to work and

i have my family and friends to support me and

who believe in me and

i have faith.

i have faith that i will get better.

i will make myself a better person and

i will do my physical therapy and

i will eat healthy food and

i will educate people on fibromyalgia and

i will take my medication and

i will overcome this disability!

what else do i know?

if i can do this?

anyone can!

having the preferred parking ain’t what it’s cracked up to be… i’d rather walk the extra distance.

it’s ironic: invisible condition, invisible people & social networking

myfoggybraini found out i had fibromyalgia over a year ago… i started reading books and attempting to learn as much as possible, yet after a year has passed, i feel like i was not taking in as much information in as i should. in the last four weeks, i have learned more than in the entire year, not by books or doctors, but by social networking.

my name is “my foggy brain” and i am a fibromite. i have the “invisible condition” noone wants to believe and noone can see. the strange thing is, social media, by definition is “the unseen”. it is virtual. it is facebook… it is twitter… it is blogging. so i remain “invisible”. i remain invisible by choice. i admit i am new to this. i have only been doing the fibro twitter and blog thing for a month so maybe there is a time when people get together. i’m not sure if i’d be up to doing that… i mean by definition, we are a group of people who don’t travel well. i can’t fly and can’t see a time when that would be a good idea. i can’t ride in a car more than 45 minutes without major pain. soooooo where and how would a “tweet up” happen? don’t get me wrong here… i was just sitting here and found it ironic. invisible disease/ invisible people.

i have been doing the social networking thing for a long while now, i have two twitter accounts (probably not such a great idea for someone who can barely finish a sentence… but i digress). i have an account just dedicated to my fibro friends and it is the best thing i could have ever done. very focused, provides me great information and the people… the people are GREAT! the level of support that the people provide to each other is so nice… i would have never thought it would be so nice. it is like a 24/7 support group. i totally underestimated the value of twitter in this respect. i am kept completely up to date on the latest and greatest news, medications, therapies, etc. AND provided wonderful support… AWESOME!

with my blog… i love the comments. it’s nice to know i’m not alone. i have been reading other people’s blogs and it’s been inspiring… so many people are suffering from fibromyalgia and feel alone and many don’t have a lot of support. it’s hard to read, i want to reach out and jump through my laptop and help. this condition is so tough… it affects people in so many different ways…  the worst part about it to me is that it seems to affect people who in the earlier years were HIGH HIGH HIGH performers. people who went out of their way to help others and were always  doing too much and basically burned out their bodies. now when they need help, they don’t have a support system. just doesn’t make sense.

what do you think?

btw… if you want to follow me… i am @myfoggybrain

thanks for reading! stay cool!