exhaustion

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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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When the Anger & Frustration Get The Best of You, What Do You Do? Choose Calm…

I am counting down the days… less than two weeks away until my son graduates from high school. While there is a lot to celebrate, I feel like I am seriously being tested. Mentally and physically…

This is one of those “how much can you take?” tests. All I’m saying is…. REALLY???? Right now???? First of all, I am not complaining. Okay. I’m complaining a little bit. So, as you read this, you must want to know what I am going on about. Well, I’ll tell you.

Work…. on top of Life…. on top of … Work … on top of Life… on top of … well you get it.

It is exhausting.

When the anger and the frustration get the best of you, what do you do? It’s interesting, either it’s age or all of the training I have received in the last couple years, I feel like I am a lot more calm now than I have ever been. This is another way for me to keep a flare away. If I lose my temper, I am guaranteed a flare within 24 hours. So, honestly, it’s a choice I make. How about you?

How about your surroundings? Do you notice people around you are getting mad a lot quicker? It seems to me people also get really mad at the small stuff. It’s crazy to me. I just don’t get it. It’s such a waste of energy. I guess, for me, I have so little energy to start with I see no reason to waste it on the small shit. Maybe if people were in pain, they would feel the same way. It’s an interesting way to learn such a profound lesson, but that’s how I learned! He said/she said… why do YOU care what people think of you? What is really important is what YOU think of you. Think about what makes you angry and figure out WHY. Is it worth spending the little energy you have on that anger? Or would you rather do something else with that energy… like LAUGH?

We are surrounded. There’s no doubt about it. Road rage. The daily news. TV shows. Movies. Rude people. Rude people in general. I am amazed at how rude people are these days. Rude people raising rude children…. and so on and so on…

So! Don’t stand for it. Smile. Don’t let the small shit get to you. Don’t get angry, get over it! Treat people with respect… ya hear me? Let’s use our energy for positivity!! Stand up and shout about it!

If you feel like you are about to lose it… close your eyes, breeeeeeeaaaaathe, count to ten.

If you want to scream at your boss, your husband, a rude person, your doctor …. take a deep breath, close your eyes, breeeeeeeaaaaathe, count to ten.

So… I think you get my point. The person who is going to suffer the most at the end of the day is the fibromite in the anger game.

Choose calm. Thanks for checking my blog out. Please leave a comment.

Stay cool – and chillax!!

PS. It’s funny how I always start off with one train of thought… and I always seem to end up somewhere else. Oh well, I did say I had ADHD, right? LOL!

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I Am Enlightened… My Son is Graduating! I Can Do This, RIGHT?

Being a parent is so easy… When I was pregnant, I read all the books, I took in all the advice, I did EVERYTHING right… I was soooo prepared!! Man, I am the perfect parent!! Just call me and I will tell you all the answers. I am the leading advisor on all parenting issues.

Yeah, right!!! Ask my kids, they will tell you the real truth. My son is graduating from high school in a couple weeks and last night we had our “what are your plans for the summer conversation”. I am enlightened. I shouldn’t really call it a conversation. It was more of a one-way talk/defensive-response. I mean, I’m under no crazy assumptions here, I know I am not, let’s just say your Claire Huxtable/Mrs. Brady type of momma … but on the other hand I am also not your get-ready-for-primetime-Jerry-Springer-show momma either. I am smoothly on the side of “living-with-fibromyalgia-so-can’t-do-it-all-so-I-do-my-best-and-it’s-not-always-the-most” kind of mom. I am not sewing Halloween costumes or baking cookies or to be frank, doing laundry or making dinner or to really put it out there… cleaning the house or driving the children around. Are you still with me? Or did y’all quickly leave my post in disgust… that’s me, take me or leave me… I work full-time+, generally about 50-60 hours a week as a, let’s see my title this week is “Sales Operations Analyst”. I have two managers … I report to a Sr. Director of Global Operations and the VP of Sales at a hugemongous (yes I made that word up… and I like it!) corporation that is taking over the world one company at a time. I have worked full time since I was about 16. That’s 25+ years working full time, I’m just slightly tired sometimes. Until FMS hit me, I was definitely that type A personality. Now I am a type “a” personality… just give me the little “a”.

So, having said all that (remember… easily distracted)… I am enlightened. This is a difficult time for me. I want to stop the clock and just say “Wait a minute. I just want some you and me time to just chill. I know you are leaving, but I want to just hold on to you a little bit longer…” He, on the other hand, is ready to GO. I remember that time. I could not wait to get out of the house. I wanted to go, get out and not look back. This is a difficult conversation. Any words said between parent and child can be pretty hurtful.

Us. “We want you to get a job. We understand you are making money on your own, but we also want you to get some experience, have some structure, learn how to take direction within a management team, etc.”

Him: “ummmm, whatever. I don’t agree. I’d rather just hang out with my friends.

Us. “We know you are going out with your friends, we just need to say this so it’s been said… please make right choices about getting in the car with people who are driving under the influence”

Him: “I choose smart friends, why would they do that? I don’t appreciate you assuming they would do that.”

Us: “We just want to tell you our expectations for when you go to college, just on our mind…”

Him: “Why? Can’t you just tell me on our way when you drop me off in like three months, this makes no sense… I mean, why do you need to tell me now?”

Us: “You are graduating from school, you have a lot more time to contribute to the house, both inside and out. We would appreciate it if you would help out. These are not chores, these are things that need to be done, that we may ask you to do. You don’t have any chores that you do, so would ask that you help out a lot more until you leave.” (An alternative was given to pay instead of helping out…)

Him: “I’d rather pay than help.”

Anyway, I’m sure this is not drastically different than a lot of kids, but honestly. Selfishly, and I mean this, selfishly… life at work is so hard, why does life with him have to be so hard? He is so defensive and argumentative about everything that he disagrees with. He cannot discuss calmly, he just goes for the jugular. Aw well…

He was honest. He told us he’d rather spend his summers staying at the college than coming home… He said it’d be more fun staying at the beach with friends hangin’ out than coming home and getting nagged. Wow. That was enlightening. This kid has zero chores. I made a mistake somewhere not giving him chores and sticking to my guns on that one. Now any chore he is asked to do is an issue. On the other hand, this is also not so hard to understand. I would have felt the same way at his age. It’s is just hard to hear.

I am enlightened. Since he was a small child, he has been so stubborn. Very hard headed… to the point that we took him to counseling. I think I get it. Now. Just this moment. He is very serious about his stuff. Since he was a small child all the counselors have always said, “take away what’s important, whether that’s material or something like privacy, ie. remove the door from his room”. We have done that all his life. Now he pretty much hates us for taking that action. He KNOWs his stuff will get taken away, yet he will not give a shit. At the end of the day, he is pissed at us for all the shit we have taken away in his life. Still pissed. He remembers everything. So, why did he push it to the extreme? Why did we let things go so far? Life lessons. There is no damn “this is what you should do in this situation” reference book for each individual child.

In our children and godchild’s lifetimes, we have done our best as parents. We have made mistakes. We will continue to make mistakes. That is how life works. I know this, I accept this. It is painful for everyone involved. This is how we all grow.

I do know, my miracle child is smart, he is a genius to me, he is going to go exceedingly far in life. I am so proud of him. I love him. I trust he will make the right choices. That doesn’t mean I won’t worry, that’s just part of our DNA as parents, right?

Now begins the countdown… Lord have mercy. I can do this. He is ready. I will be too. He is a strong boy and when he walks out that door, he will be a b-b-b-….MAN! He’s been prepared. It takes a village and those he has been around the last 17 years have all given him the tools he has needed to become who he is. It’s up to him to take all of that and take the next step.

Y’all pray for me and give me your support… I already miss him!

Stay cool!

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I am Flare Free!!! This and my Journey with Fibromyalgia the Last Few Weeks

I have to tell you… I have started this post and others many times. It is now May 16th and I am happy to say that I am flare free. Did you hear me??? FLARE FREE!!! Uh-uh. No. Don’t just read that sentence like it’s nothing. Read it again… Say it out loud with me. Wait a minute, Let me make it easier for you:

I   A M   F L A R E   F R E E !!!

I actually feel good. I can’t believe it. What the hell is going on? I’m not complaining or anything, but seriously, what the hell is going on? I like it! The timing is great! I need the energy to get through the next few weeks to get shit done. I hear you, PACE. I know. I am learning. Every day I am learning.

What I’m saying is… it can happen, I went from excruciating pain to feeling good. My medication is working. My exercise is working. It’s not magic. It’s not a miracle. It’s work, it’s what I learned from Physical Therapy, Counseling and research and most  important it’s about being consistent! Don’t give up. Each and every day I have to remind myself that it takes positivity and work to create change. Some days it takes more positivity than others… “This too shall pass” are the words I meditate by on those days. I deep breathe and on the in and out, I say those words and with each breath I get a little bit calmer.

This last 6 weeks has been a super-duper challenge for me. I thought I was going to lose the ability to walk and was starting to wonder about the use of my hands. Very scary. Noone can understand the fear this creates in the brain of a fibromite. I am feeling really blessed to be able to walk without my cane for an entire day.  I’m excited to be able to go to my son’s High School graduation in a couple weeks and not have to worry about being completely out of it. I can walk without everyone asking me what happened! This. is. awesome.

I understand tomorrow is not promised. I understand tomorrow I could wake up and not be able to walk. I have not lost my marbles (well that can be debated, I know! :)). Today is a great and awesome day. I am going to enjoy it. I am going to appreciate what I have. If tomorrow is completely different, I will deal with it when it comes. For now? I can walk and I can do what I want and I LOVE it!!

You all have a beautiful week and thank you so much for stopping by! Please leave a comment and let me know how you are doing.

Stay cool!

PS. I started and stopped the two posts below and never got around to posting them, I thought I’d include these posts with this one since it’s all a part of my journey…

Wait Do I Really Have Fibro?

It’s May 13th… April 9th is when it started. That is the day I woke up to the most horrible FLARE in a long time and I am praying tonight that it is finally coming to an end. Today was the first day that I woke up and felt human. I had one of those days, you know what I’m talking about — you wake up and you think “Wait, do I really have fibro… I’m feeling really good right now!”.

I felt so good I didn’t want to admit it to anyone. I didn’t want to say it out loud. I didn’t want to even whisper it. I did, however, say to myself “Today’s going to be a good day!” over and over in my head. I believe in the power of positive thinking.

You have to understand… stay with me for a minute.

  • For the last month I haven’t been able to stand up in the shower, wash my own hair and to get really personal, on most days I needed help to wash my own body.
  • I haven’t been able to walk without my cane. Walking with my cane, making it around the block would be an amazing feat!
  • I haven’t driven myself anywhere in so long, it’s amazing I even know how to drive anymore!
  • Just this week… I was in a wheelchair on Tuesday so I could participate at a conference with my colleagues at work. A wheelchair. Let me say that again… a wheelchair. Once more, a wheelchair, and let me say I was the first one to use it AND I borrowed it from a woman in her 90’s who is in WAY better shape than I.
  • Just yesterday, I was in tears I was in so much pain before going to the office.

All of a sudden today, I was able to walk without my cane and I was able to get through most of my restorative yoga class and it’s the end of the day and I now definitely feel the pain, but I’m still okay. This pain stuff is just crazy. So, all I’m sayin’ is… the FLARE better be gone! It visited for over a month, it’s definitely time to go!!

Things are about to get really crazy around here… and I mean crazy. PACE is going to either be my best friend or my enemy. I guess that’s the real definition of FRENEMY. Lord have mercy. Did I really just say that? Seriously. I need help. I mean mental help, I’m starting to lose it. Okay, so I already lost it… so that just means I don’t have to worry about losing “it”, right? If anyone finds my “it” anywhere… just send “it” back to me. I don’t know what you’d want my “it” for anyway, you can see by the way I operate, my “it” is not in very good condition!

See how easily I am distracted? FOCUS! Okay so! I have a lot coming up in these few weeks, I don’t have time for a FLARE.

Day 25 of My Very Intense Flare…

I will apologize now. I am not the most upbeat today. It’s Day 25 of a very intense flare. One of the most intense flares in, wow, SIX months! Just looking back through my posts, I thought it had been much longer, but it’s only been six months. I am now feeling just a little bit worse. I am going to allow myself to feel like shit for just this moment so I will hopefully feel better by the time I get done writing this post. It’s getting very difficult for me to keep it together minute to minute, hour to hour, day-to-day as this flare continues.

This flare is different from before… very different. For the first time in the history of my flares, I cannot get enough sleep. I am tired all the time. I mean, I am exhausted when I go to sleep, when I wake up, when I eat, when I work, when I breathe… just when. On Monday when I went to the dr., he got it. Exhaustion from pain. This time is different. I am in level 8-10 pain 24 hours a day, 7 days a week… every second of the day… and it makes me tired. It makes me frustrated and it’s starting to make me really angry. I am really, really, really trying not to let this shit take over my life.

Today was the day I hit the wall. If I had the strength I would have beat the shit out of the wall. I have taken a vacation and not been able to walk, I have been to a wedding and not been able to dance, I have been to the beach twice and not been able to walk to the ocean… for me? not walking to the ocean is actually a first… I should not whine, it’s a blessing that I can walk at all. It’s a blessing that I am able to go to the beach and I was invited to a wedding… a beautiful wedding with some great people and I got to watch my son dance all night, it was the best night ever! What the hell am I complaining about? I’m not complaining… I’m not.

I believe what I am trying to say is… I am tired. I am in a lot of pain and it is hard to deal with. Some days are harder than others and today is one of those hard days.

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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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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!