This Roller Coaster We Call Chronic Pain…

I have spent the last few weeks in a complete funk. I felt like shit. My flare kept me down. I had a difficult time overcoming my depression. Life was not fun.

Chronic pain is an interesting condition to live with… it’s like living on this ultimate roller coaster. Your life is literally going in these huge swings of ups and downs depending on the levels of pain you are in. YOU have to constantly be in control of your emotions. Everyone around you depends on YOU to constantly be in control of your emotions, your pain medication, your antidepressants (if you use them), your diet, your exercise regime, your sleep hygiene, basically every minute and second of your life. Let’s be real… this is just unrealistic. I know this… my chronic pain friends out there know this… but 99.9% of the people who live normal lives will never understand this. It’s incomprehensible to get this. Although they (folks without chronic pain) deal with it, they want a consistent “YOU”, not this sometimes  emotional, sometimes irrational/ erratic/ sensitive person. Sure we live in the straight areas of the roller coaster and we appreciate those times, but we all know that there are going to be the ups and downs.

Here’s the reality. The reality is, no one is perfect here. No one. Not us – the chronic pain people. Not them – the support people. We all have to understand this. So, there really should not be an “US” and “THEM” in theory, but in reality once again I challenge everyone to  think about this difference in groups. How do we bridge this gap? Is there a need to bridge the gap?

How do we better educate our family and friends around us? I still find it very difficult to talk about all the conditions I have. I don’t want people to feel sorry for me, I don’t want to get “that” look. I realize I need to be okay with how people react, their reactions are normal. I realize it takes time for people to accept and be okay with change. I want to educate people so they can understand the conditions that I have. I want people to understand that I am in pain everyday. Some days are better than others, but even though I look good on the outside (okay people I am not trying to say “I look GOOD!”, I’m saying I look healthy good), the pain I feel is real.

So, let me get back on track (good pun, huh? Sometimes I am pretty good! lol!)… I was on the down side of this roller coaster and I was falling fast. I had no sight of things getting better and I really felt like the pain was going to keep getting worse, my stomach has been upset, I’ve been using my cane, my depression has been bad… that dark cave was getting smaller and smaller. I was trying to find ways to get out, but I didn’t feel like I had options.

I have been praying and I pushed myself to spend the 4th with friends and family and you know what? That dark cave opened up and the light shined through. I allowed myself to just relax and my husband and my kids took care of me and I enjoyed time with old friends and family. I had a fabulous time! I am not a social bunny (understatement of the decade). I generally do not like to be around a lot of people, but I had a really nice time. When my pain got to be too much, I looked at my husband and he knew exactly what I needed and we said our g’bye’s. We came back to the house and rested for a bit and while I rested my husband took Tani out for a run and then we all went next door for the annual fireworks and then back home for the night. All in all a great day to bring some well needed light into my life!

Sometimes, it just takes the simple things in life. Some friends to light up your life. Say “YES” to the invitations to go out, even if you stay for an hour. You might be surprised by the smile on your face when you leave. Wear something easy and don’t be hard on yourself about having to look perfect, people want to see YOU! I have missed out on many opportunities and I am sorry for that. I can only hope to work harder at this.

Also, let’s find ways to better educate those around us, and remember we aren’t all perfect… it’s just not possible. Let’s find a way to bridge this gap. The responsibility is on us, we are the ones with the medical conditions and we have the knowledge. Let’s find better ways to share in a user-friendly way. If you have ideas, please share with me.

Thanks so much for stopping by! Stay cool!

Tamiko

A Simple Post: My Fibro Journal Template… Use It & Track Your Daily Progress… YES I SAID PROGRESS!!

Hi everyone!

I created this template based on the 10 week Level II Pain Program I took at Kaiser and I have used it every day for a month. It has helped me remember to take my meds, really understand my sleep (lack of sleep), how my pain goes up and down, when and how often I flare and… when I talk to my dr… I can actually speak factually (what a concept)!

Try it, tell me what you think… these are just pictures. I posted it a couple of weeks ago, but I thought if I showed you what the pages looked like, you would be more apt to try it out. :) You can download the template in my Awesome Resources tab.

If you are not tracking your progress… if you don’t use my template… create your own or buy one or do something! It’s important so you can see your PROGRESS!!!! Even if it’s small, you do progress. Even if it doesn’t feel like it… you are making progress. You will have bad days… but you will have GOOD days. Journaling forces you to see the GOOD!!

Okay, I’m off my soap box. :)

Thanks for reading and have a super cool and pain-free week-end!

MY FOGGY BRAIN: Daily Fibro Journal - Page 1

MY FOGGY BRAIN: Daily Fibro Journal - Page 1

MY FOGGY BRAIN: Daily Fibro Journal - Page 2

MY FOGGY BRAIN: Daily Fibro Journal - Page 2

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? :)

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.

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!

How Do You Recover?

How do you start your day? If it starts out good or bad, does that determine how the rest of your day will go? Do you have the ability to turn your bad day around if and when it turns sour?

I tell you… with chronic depression, it’s like climbing up Mt. Everest carrying a 100 lbs. of cement on my back to turn a bad day — to good. Some days it just doesn’t work out. Some days the depression just hangs around like the cloud of dirt around Pigpen. Some days I am able to turn it around.

Yes, I take medication. I take medication to help me manage my pain, my depression and to help me sleep. I remember what it was like without medication. I know I don’t want to go back to those days. I hate putting these pills into my body. Every time I have to refill my pill boxes, I hate it. It cause me to go down a bit, but I have to remember that in the end it helps me. I sleep better, It helps me walk, work, spend time with my family… it helps me be human.

I worked about 70 hours this past week. I had a colleague tell me on my fourth work day at our business dinner, when I finally gave in and used my cane, that I didn’t need to use my cane, that I had walked fine all day without it. Nice. It still kills me to have to use a cane, and it’s always nice to get comments like that on top of my own pride. By Friday I could barely stand up. A few hours into the day I just lost it and during the meeting started to tear up. Really nice. Nothing like being in so much pain and so exhausted you just can’t do anything but cry… while at work with your entire management team.

How do you recover on these days? I’m not sure I did on those days. Exhaustion is difficult to recover from without just laying down and going to sleep. It’s Sunday now and I have spent the last 48 hours since coming home from work on Friday basically in a complete fog. I have either been asleep or laying down only to get up to go watch my daughter’s soccer game and to take her to the store. To go watch her game was so fucking painful, I really had a hard time even watching. So five days of work, 2 days of sleep. Normally tomorrow I’d be going back to work, thankfully I am on spring break with the kids. This has been my schedule for the last few months.

So… again… how do you recover on these days?

  • You pray
  • You rest
  • You give yourself a break
  • You relax and take care of yourself
  • You smile
  • You laugh
  • You remember it’s just one minute, one hour, one day… you don’t look past right now

That’s what I need to do.

Take care of you.

Thank you for stopping by… please share with me how you recover.

Stay cool.

I Close My Eyes…

I notice I close my eyes a lot these days…

When I am in physical pain.

I close my eyes.

When I am hurt emotionally.

I close my eyes.

When I am mad.

I close my eyes.

When I am sad.

I close my eyes.

When I am frustrated.

I close my eyes.

When I am tired… exhausted.

I close my eyes.

When I need to think.

I close my eyes.

When my heart is feeling scratched and torn.

I close my eyes.

When I feel disrespected and I am about to lose my mind.

I close my eyes.

When I am talking and I’m not being heard.

I close my eyes.

When I need to take a mental break.

I close my eyes.

I find myself thinking what it must feel like to be blind…. memorizing my surroundings and taking mental note of what I want to remember. Visualizing in my mind the environment I want to keep in my memory if I am not able to see.

What is this about? I have no idea. I have just noticed that more and more in the last six months, it is a physical response that I have started to use. It was not something intentional, but also not something I decided I didn’t like. I like it. I like that it makes me stop and take a moment to close the world out and take a break. It tells me… “don’t lose control…. just take a moment and get it together.” This life or any life is not easy. God did not put us on earth for “easy”, we are all here for different reasons. If we accept that and stop fighting it, then life becomes easi-“er”.

I believe I know why I am here. I am put in situations and I help out where I am needed. In the end I am definitely rewarded. God is good to me. As long as I look at the big picture and don’t just think about “ME”, I do well. This life is not about me.

It’s interesting, I got up this morning, to write about something completely different. God certainly does work in mysterious ways.

I hope you enjoyed this post, please leave your comments.

Stay cool and have a happy Easter!