fibromite

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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? :)

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Expect the Unexpected… The Life of a Fibromite

Expect the unexpected… that should be the motto of our lives. Each day we wake up we never know which part of our body will function, or not. This is always an interesting part of my morning routine… I wake up and lay in bed for a few minutes and sort of have a chat with my body:

“okay feet, what’s going on… crazy nerves or are you going to be cool today?”

“legs and knees, numb this morning? can we stand up? walk?”

“back… oh back, let’s just rest a bit and then stretch out and … we really can do this… right?”

“shoulders… breathe…  breathe… release (I always have to remember to let my muscles relax in my shoulders!)”

“neck.. relax.. relax! .. oh I mean …. breaaaathhhheeeee… relaxxxx”

I have had one flare free week and what a blessing that was. I haven’t had a relatively pain free week like that in a very long time. Today is a new day. I will take it for what it is. I have new challenges to face today and I will face them and I will use my tools to manage through the pain and I will fight the flare monster away!

Today is a new day.

Expect the unexpected… and accept, sometimes it’s good and sometimes it’s not so good. Everyday is a new day, which means every day you have a new opportunity to make it a GREAT DAY!

Thanks for stopping by!

Stay cool.

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Fibromites, Do You Wake Up Refreshed? Just Smile!

It is Saturday morning, 6:30am and I am sitting here wide awake. Ask me why… c’mon, ask. Come onnnnn…. Okay fine! Because it’s Saturday and I can actually sleep in (well not really, my daughter has a soccer game and I would have to get up in a bit anyway, but that’s not the point!). The point is, it’s Saturday and I don’t have to get up at this time and it’s like flipping backwards day as usual in my life and I am awake for no reason when I should be asleep and here I am wide awake! Whew! That was a long sentence! It is not as if I got enough sleep so I woke up feeling…. and I hate this word now –> REFRESHED (Wait a minute, I honestly have tried to take that word out of my vocab… so rewind, erase and replace hate with strongly dislike). How many fibromites actually feel “refreshed” when they wake up? (could you actually feel me doing the quote/unquote really strongly with my fingers that time? because I was, well as strong as these grip-less hands would let me). I mean, that is just not something I have felt in years. I wake up feeling like …. hmmmm … not sure I have thought about this … I wake up and think about how I slept, what hurts and will I be able to walk when I get out of bed and then I try and figure out what day it is. Now as my daughter says, “sharing is caring” so when y’all read that one, laugh with me, not at me… because, for example, today I woke up and really thought it was Thursday for some reason. I was pretty happy it was Saturday once I figured it out. Still laughing at me, I mean, with me? That’s alright, that’s why you visited my blog today, some pain relief. :)

So back to my point, most days I wake up feeling tired, half of those days along with tired foggy decides to join the party and maybe 15% of those days depression decides to crash the party and bring everyone down. So refreshed never really happens. I wonder what that’s like. You know when you are watching t.v. and that commercial comes on with the chick in her all white pajamas changing the all white sheets, and the light shining through the wall of glass behind her and she just looks all clean and refreshed? She is the anti-me. I ha… oh wait, really dislike her.

It’s really not all bad, it’s my reality. I’m just saying it’s Saturday and “hellllllooooooooo”, just thought I might sleep in today, but apparently I needed to get up and greet the world. Okay… seriously, I am smiling… I really am. I just realized it. I am crackin’ myself up as I write this… I have to take my own advice, right? Don’t take life too seriously… and THAT my friends is why I am up early. I needed to wake up and get an early start so I could smile and hopefully make you smile. If I didn’t get up early enough I would not have been able to write this before getting out of the house for my daughter’s game. That’s the start of my day… smiling. Awesome!

Hope you enjoyed my post. Thanks for stopping by and I hope you start your day with a smile!

Stay cool!

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My Mom and I Sport Matching Canes & I Want to Tattoo this on my Children!!

If you all go back into your memories and think about how you were raised, the moments that stick out into your mind… what do you remember that relates to your health today? What should you remember? What is that you want to communicate to your children that they may want to keep in mind as they grow older?

I went to lunch with my folks yesterday and one comment the manager of the restaurant said stuck in my mind… he said something like “I like how you two sport the matching canes!” From that comment, this post was born…

I remember, when my mom was my age, she certainly was not using a cane. She was in much better shape than I. When my grandmother was my mother’s age now, she certainly was not using a cane, she was in much better shape than my mother. It amazes me how the health of the three of us have deteriorated between the three generations. My grandmother was in really good shape until her 90’s. I don’t see that for myself. How is it that my grandmother lived to her late 90’s and both of my aunt’s have passed away already? They were not even into their 80’s! As I look into the past, this is what I  remember…

  • In my childhood years, my mother used to do all the cooking and cleaning, driving us around, in addition to all that, she was also very active in a non-profit group with my father.
  • In my high school years, I remember my mom working and running errands and helping us do whatever needed to get done… her life had to be frustrating dealing with 2 teenagers in the house! She was working at a medical clinic and still doing the cooking and cleaning. I was not paying much attention, I was a selfish teenager just paying attention to myself. I can somewhat appreciate my son’s attitude as he graduates from high school this year. I was a bit more oblivious than he is!
  • After I moved out, I noticed my mom took a lot more naps in the afternoon and tired a lot easier. It’s hard to work, take care of a house, and cook. I think she stopped cooking as much as her lack of energy didn’t allow her to do it all. Completely understandable.
  • As I started having children, my mom’s health really started to decline. She had to stop driving and her eyesight was not as good as it used to be so she was not able to enjoy the hobbies she once used to love. Now quality of life was so different that it once was. I can definitely relate to this.

I know through all of these years, there was a hysterectomy, hypoglycemia, diabetes, kidney transplant, plus a lot of stuff going on with her eyes… all the while my dad has had his own medical issues to deal with.

When I think about all this, I sit back and want to tatoo this on my children.

  1. Exercise, exercise, exercise!!!
  2. Please, eat a balanced diet… don’t go crazy, just eat good foods!!!
  3. GET EDUCATED!
  4. Never be too proud!!!
  5. Have fun, tomorrow is not promised, don’t take life or people too seriously!!!

Honestly, there have been many moments in my life where I have let things get to me and bring me down for WAYYYYY to long. I mean, really… REALLY? Was it worth it? HELL NO! Let’s be serious. I wasted that time just being angry.  So as I said… wasted time! Stop wasting time being angry and get over it!

I have definitely wasted moments in my life not getting educated vs. getting an education. That may sound strange, but instead of actively learning I would honestly sit in class and just not pay attention. If you have the opportunity to learn – pay attention and get educated!! I just had a really hard time, I believe I was depressed and I let myself fall further and further behind and never raised my hand up and said I needed help. I was too proud. Never be too proud. Especially if you have chronic pain. That is one thing I have learned in so many ways… over and over and over and over again!

Moral of the story? The time you have is valuable, use it wisely.

  • Live, love and laugh!
  • Don’t be too proud to ask for help so you can use your energy to have fun vs. washing the dishes or cleaning the house.
  • Get educated, we are the best advocates for chronic pain and fibromyalgia, let’s keep pushing the knowledge out there!

Does this make any sense? Let me know.

Thanks for stopping by my foggy brain blog. It’s been one hell of a painful week. I end this vacation wishing I had another week off, but accepting I don’t. Thanks for all the support!

Big HUGE thanks to Teia Hassey for my Sugar Doll award, that has totally made my vacation week!! Everyone check out her blog, it’s awesome!

Just Breathe – Life changing experiences with tibial torsion, ovarian cancer,vertigo,tinnitus,and Fibromyalgia. My quest for happiness.

Stay cool!

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Fibromyalgia, Vacation and What Was I Thinking?

Sooooo, I thought I’d go on a little vacation and relax. What the hell was I thinkin’?? I worked my ass off all last week in the office leading a staff meeting (remember that was my 70 hr work week) and then this week was the week I took vacation. Good idea? Ummmm, hell no! I am doing my best to relax, but I am in the most excruciating pain ever. Can y’all say F-L-A-R-E U-P??? Say it with me… FLARE UP!!

OMG! As my daughter says to me all the time as she rolls her eyes at me. This is really painful. For the first time ever, I really wish I had a wheelchair. Shit. Did I really just say that? Oh and get this, I actually said it out loud earlier today. OUT LOUD! I said it to my husband. “Do you think they rent wheelchairs?” I just wanted to suck it back in after I said it. While at the same time, I wished I had one. Lord have mercy… I mean it. WTF? I mean it. Please. Have Mercy.

So I am in the most beautiful place on earth. Okay, maybe not on earth… but as far as I’m concerned it is as far as I will be going on earth for a really really long time. So it’s the most beautiful place on my “earth”… Santa Barbara. We came to look at my son’s future college, UC Santa Barbara. Let me just say this… I am proud of what I have accomplished while we have been here. We arrived on Tuesday morning. Here’s the deal:

Tuesday, 4:15 I wake up… we leave about 5:00am (again OMG! it is really early!!), drop Tani off at my folks house and get the hell out of dodge, arriving at UCSB at 10:00. So, I start my day off with a long drive in the car. NEXT… a long walking tour of the campus. I thought I was going to die. My cane and I followed this happy sophomore guide as fast as I could go… at the end? Well, let’s just say I could barely move. Where was the car? Ummm on the other side of the flippin’ campus. My foggy brain was not functioning, my son was off somewhere else, my daughter was leading the way and that was interesting as we took the long way back to the car. Needless to say… ARGHHHHHHHHHHHHHHHHH!!!!!!!

What is the moral to this story? If you have a really long, hard week… and you KNOW it’s going to be a really long, hard week. How about planning your vacation away from that really long, hard week so that you have a chance of NOT having a flare up while on vacation??

In my case, I didn’t really have a choice since I had to plan my vacation to coincide with my kids’ spring break. I’m not letting it ruin my vacation though! I am still doing what I want, I’m just working through the pain.  I was hoping my flare up would be done before we started our trip, unfortunately it has progressively gotten worse… so I just keep doing my exercises and the stretches that I learned in my pain program and carry on! Y’all know how I am. Stay positive, and keep on going!

If we let this fibromyalgia/ chronic pain stop us… we would never do anything! I am in this beautiful place, the weather is sunny, blue skies, perfect temperature… I really couldn’t ask for more. I am blessed to be able to come here, so I am not complaining. I love it! What I am saying is, in the future… it’s all about timing.

It’s all about PACING ourselves. I just need to keep reminding myself of this. Pace, pace, pace, the number one challenge I need to conquer.

Well, once again, thanks for stopping by! Please let me know what you are thinking about!
Stay cool!

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Reach One, Teach One: This video on Fibromyalgia is Amazing!

I read a lot of information on chronic pain and specifically Fibromyalgia. I personally feel like I am pretty educated. I just finished going through an awesome 10-week Level II Chronic Pain program through Kaiser (which I highly recommend to anyone who has Kaiser, send me an email if you want more information on this).

The video in the link below is of Dr. Sean Mackey, Chief of the Pain Management Division from the Stanford University Medical Center, he gives a detailed presentation of Fibromyalgia/ Chronic Pain that is just amazing… I generally have the attention of a gnat, I watched this entire video… IN ONE SITTING! I kept wanting to look away, or put my laptop down and do something else, but I was so intrigued by the information I stayed glued to the screen. He provides the answers to:

  • What is Fibromyalgia?
  • What are the symptoms?
  • What are some of the treatment options?
  • What is pain?
  • How should fibromites/ chronic pain patients be treated?
  • Alternative therapies
  • Latest studies
An Update on Fibromyalgia

http://www.researchchannel.org/prog/displayevent.aspx?rID=28078&fID=345

Tip: If you watch directly from the site (and don’t download the video), you will get the video with closed captions which is really nice to follow along with Dr. Mackey as he speaks.

The date of the video is October, 2008

Running time: 1:14 (well worth the time!)

You will learn everything you need to know about FMS in a language that anyone can understand. He is positive and I felt almost uplifted watching this even though the information was sometimes difficult to hear. He knows his stuff!

Encourage your friends and family to check this out so they can better understand what you are going through.

Thanks for reading, I hope you find this helpful!

Stay cool!