Even in the Midst of Your Worst Flare… Find the Positive!

0What the hell is going on?!! I ask myself this every day. It’s a question that has a bullshit answer. You know exactly what I mean… you’ve been here. I’ll tell you what happened. July 5th I went into a flare. Since that day my pain levels, fibro crap and depression have gotten worse with each day. I haven’t been in a flare like this for years. This shit makes me angry. I thought these days were behind me. I mean, seriously… years have gone by… YEARS!! (do you hear me yelling?)… years without this kind of flare. I’m back to shuffling around the house like Tim Conway in the Carol Burnett show (for those of you older folks that remember). I feel like I’m falling in slow motion and can’t grab anything to stop the fall.

I know you know what I’m talking about because we all go through it. The frustration, the anger, the exhaustion, the anxiety, the depression… and so on… and so on… It’s bullshit. You know the funnest part this time? Soooooo apparently my eyes have decided they are tired. In the last week I have taken all my glasses from the last 5 years or so, laid them on the table and tried each one of them on to try and find a prescription that will work for the day. Each day is different… of COURSE each day is different. I think it’s a conspiracy…

Left eye: “Hey Righty! Over here, over here! Yeah… Soooo, I’m tired of these glasses. What do ya say we force the issue?”

Right eye: “You know Lefty, that’s just not right… she has enough going on.”

Left eye: “Seriously, we have to wear the same thing every day! Aren’t you tired of this old frame?”

Right eye: “Hmmmmm, now that you mention it… I could use a new look. Maybe that will lift my spirits a bit… yeah, let’s do it!”

Left eye: “Okay, here’s the plan. Let’s get blurry! Ready? Set? GO!”

So my vision is blurred, everything seems slightly out of focus no matter which pair of glasses I sport. The crazy thing is… I know even when (because it’s just a matter of time), even when I get new glasses, within 6 – 9 months, the cycle starts over. These eyes of mine… I can’t complain, I am blessed to have the ability to see.

I know that, for the most part, I try to be upbeat in my posts… I’ll get there, I just need a minute (start counting the seconds… one, two, three…) It’s been a rough few months. Although this flare has been the worst of it, I have been struggling. I have been trying to figure out the best course of action to take next. I had actually started to believe that maybe… just maybe I would push the spine surgery. As soon as the thoughts started to become real, this flare came on. It’s almost as if my body is screaming out that I should have this surgery. So, I scheduled it. I’m pushing forward. I’m having the surgery… Next week another MRI (ugh) and Botox shots in my neck (to suppress the tremor) and then starts the mental preparation for the surgery in September. I tried a couple meds to help the tremor (long-term) and both of them made my depression worse. Lord have mercy, that’s all we need (I say “we”…. meaning myself and all those who have to live with me!). So, I’m off the meds… in fact I took myself off everything except my anti-depressant and the OTC supplements. Well… I think my sixty seconds are up… consider the whining over.

Let me share with you the awesome stuff that has happened since my last post.

  • Kadar's Gradation - UCSB  -  108 - 2014-06-15The MOST awesome? My son graduated from UC Santa Barbara. The graduation was wonderful and I couldn’t be prouder of him. He’s overcome a lot to get to this point in his life. If you’ve been following me for a while, you’ve been there through his high school year graduation and now this momentous occasion. It’s amazing. One of the proudest moments in my life as a parent. We have had some of the best conversations in the last six months. This child is no longer a child. He has definitely grown into this awesome, amazing, smart (so damn smart!), caring, loving, beautiful man. It was a blessing that I was physically able to go to his graduation and get through this amazing weekend with family and friends. And the best part? My son is home for good and we are all together as a family again.
  • Both my kids are working! The super cool thing about this is they are both working at the same job. My son a leader and my daughter a junior staff. I watch them come home from work and smile. The stories they tell of what happened during their work day… well it reminds me of when I started working and how proud I was to contribute and do a good job. If I have done anything right in my life, My husband and I raised our children to be better than us. They are further ahead of where we were at their age. We can’t take all the credit, it has honestly taken a village of the most loving and caring friends and family.
  • My parents celebrated their 56th wedding anniversary a few weeks ago. It’s a beautiful thing. I can only pray my husband and I make it there. This year we celebrate our 20th… and although we celebrate 20 years of marriage, we are really celebrating almost 30 years being together. I’m old… and with age comes wisdom, right? Maybe, but I’m probably more old than wise. :)

So, although I am struggling with my health… there are so many beautiful things to feel good about. Perspective. It’s always about keeping things in perspective. I have both parents, my extended family and so many friends that I consider as my family around to raise me up, make me laugh, talk me through the tough times and step in when I need the help.

I hope and pray that you have a support system to help you get through the rough times. Thanks for hanging in there with me through the good and bad. It’s because of your support I know I’m not alone.

Gentle hugz (especially today! :)

Tamiko

 

Wellness Workbook – Journaling your way to a healthier life!

It’s finally ready!!! I have been working on this Wellness Workbook for a while now. To be honest, I created it over a year ago and I am just now finalizing the document and sharing with all of you. Like many of you, I have tried many different medications, diets and I’ll call them “gimmicks” to alleviate my pain. At the end of the day, what works is what most of us already know… diet, exercise and most important (in my mind)… the ability to relax and manage our stress.

I originally created the templates in this workbook for myself as a way to document my goals for better health and, as important, hold myself accountable to working towards achieving those goals. I pulled it together from all the various books and materials I have read over the course of the years, various classes I have taken, and my personal experiences.

wellnessworkbookIncluded in the workbook:

  1. Wellness Wheel: tool used to help you discover opportunities for an improved quality of life and create goals based on those areas.
  2. Wellness Plan: worksheet for documenting your short and long-­‐term health goals and listing up to four key goals in the areas that you want to work on that will help you achieve your overall short and long-­‐ term goals.
  3. Flare Plan: worksheet for documenting the tools that help you, both physically and mentally, when you are in a flare. It helps to document these so you can just flip to this page and use the tools that you know will help you.
  4. Exercise Quick Reference Sheet: there are countless exercises you can do to help with your pain, these are just some of the stretches and strengthening exercises I use on a daily basis.
  5. Reference Information: information to help you better understand how to use the daily worksheets.
  6. Daily Wellness Journal: worksheet for you to document each day; your exercise, food, pain level and how you addressed your pain, gratefulness and memorable moments.
  7. My Priorities for Today…: worksheet to document your personal and work priorities on a daily basis.
  8. Automatic Thoughts Worksheet: template to help you manage your stress and negative thoughts.

I hope that it helps you as much as it has me. Please feel free to share with whoever you feel might benefit from this type of resource, I would just appreciate if you would send them to my blog to pull down the latest version. You can either click on the image above or go to my Tools & Resources page to download the workbook.

I would also love to get your feedback so I can continue to make improvements. You all know best what it takes to manage your health and I love to hear new and creative ways to have better days.

Stay cool and keep on smiling!

Hugz.

Tamiko

Do you know the definition of insanity? I’m ready for calm…

Do you know the definition of insanity? If you agree with Enstein (which I do), insanity is… “Doing the same thing over and over again and expecting different results.” These days, I feel like I am in a constant state of insanity… of my own doing, which, in and of itself, is INSANE! I am talking about a level of unacceptability (is that even a word) that is, well, it’s unacceptable. [Is it me or does it feel like this posting is in a different language? Even I am having a hard time following myself today...] So, what was my point? Oh yeah… insanity. I am making choices these days which has put me on a path of mass destruction (cue dramatic music). Oh man, I apologize. Although in my sometimes overly dramatic world, the term “mass destruction” may be appropriate, I think we all know it’s just not true. My life is never that bad. Dramatic much? Lord have mercy. Okay, how about “I am making choices these days which are leading me down an unhealthy path”. Better? I think that sounds a little more truthful (okay a LOT more truthful, give me a break here).

rottenecard_45937984_p8rdhw6pn5We have all been there. Okay, it’s true, I am saying that because I don’t want to be the only one who feels that way… but, we have all been there, right? I realize as each day passes, the choices I am making are not very smart. I said it. I am accepting it. I’m not proud, but it hasn’t always been like this. On the roller coaster that I feel my life tends to be, right now I’d say I’m going down… almost hitting the bottom. It’s time for me to get my shit together and ride this to the straight away so I can get the strength to climb back where I should be.

I am a little too embarrassed to tell you all the stupid shit I have been doing. Seriously? You really want to know? Hmmmm, let me think on that a moment. And during this time of deep thought, I’ll digress a moment to share something with you.

My dad reads my blog each time I publish a new post. My mom has a difficult time seeing these days so my dad reads them all out loud to her. Now, the thought of my dad (or anyone for that matter) reading my thoughts OUT LOUD makes my stomach twist up a little bit. BUT! After he finishes reading my latest post, he never forgets to send me a note to let me know he read it and sharing his thoughts with me (which I always appreciate). Have I told you how amazing my parents are? A-MA-ZING! From my last post, he sent me an email and said, “Just a thought, your readers would be interested in how you went from being in an episode and being able go on a significant walk (a miracle?).  What are the signs that you are able to make a change?” He always makes me think. I admit, at first I revert back to a teenager and my habitual response to commentary from my dad kicks in… which doesn’t deserve to be said OUT LOUD (which I know he’ll do when he reads this to my mom). After a few minutes of processing, I always realize how blessed I am that my mom and dad are actually paying attention to what I am writing. So, today’s the day that I respond to his feedback. Smile dad! I bet you are laughing just a little bit right now.

My dad’s question and my response to his question play into this whole insanity phase I’m going through. It makes me think WHY did I stop all that walking? WHY did I start? Well… I started walking one rainy day when I was really upset. I needed to get some air so I put the leash on Tani (ummmmmm reminder to the readers out there that Tani is my dog and not my child so don’t call child services just yet…), anyway I put the leash on Tani and we walked out the door and I kept walking… and walking… in the rain… That day somehow motivated me to walk the next day… and the next… and I continued to walk until I was averaging three to four mile walks on a regular basis. Sometimes I would walk TWICE in one day… what? TWICE? Damn, typing that both impresses and depresses me, given the state I am in right now. There was no miracle involved in this change, it was purely out of my need one day for some fresh air… and to be honest, nothing beats walking in a little bit of rain to get some clarity.

quoteNow… why did I stop? Life. I let life get in the way, and more specifically me… I have been allowing ME to get in my own damn way for months now. It’s bullshit… and INSANE. I allowed all the shit going on in our lives to affect me to the point I am making all these stupid unhealthy decisions. So what stupid decisions you say? The kind that take awhile to turn around… let’s see… unhealthy eating (I just seem to think I deserve some kind of desserty thing before I go to bed every night, and yes I did mean to say “desserty”) and don’t get me started on chips and movie popcorn (how many movies can a girl see in a month? we are going broke from the cost of all the movies and buying up all this popcorn)… very little to no exercising… OBSESSED with Facebook games (if it’s a match 3 game, I’m playin’ it!)… tv, tv, tv…

The worst part of all this is that the smallest things seem to bring me to my mental knees (is that a saying or did I just make that up… mental knees…) My anxiety is so bad, handling even the most normal or non-stressful things are making me crazy. If something doesn’t go the right way (translation=my way), my brain shuts off and I can no longer function. ARGHHHHHHHHH!!!

I have wasteRoller_Coaster_Tracksd enough time in this land of insanity. I’m ready to go back home. I’m ready for calm and I’d like a huge side order of CONTENT to go with that calm.

So, what are the signs I am able to make a change? Well… in almost every case, it’s when I hit the bottom of the coaster ride and I realize the state I’m in. It’s today. The signs are there. I’m spiraling out of control. My pain levels are intolerable and my mental health is… well, let’s just say it’s not healthy. Today’s the day… okay tonight’s the night (it’s still just before midnight). I am going to start making good choices.

moviepopcornTomorrow is a new day and it’s going to be a good one. I will be positive. I will eat better. I will exercise. I will turn off the damn computer and stop playing these damn games… and well tv? I can’t give that up, but maybe I’ll watch it when it’s on and turn it off when I’m not (instead of just having it play in the background all the time). The tv thing… that’s going to take some work. Oh yeah, and I’m not giving up movie popcorn, but maybe I can work on the obsession.

I am kind of all over the place today. I appreciate you sticking with me through this posting. I hope you are having a good day/ night and you are making healthy choices. Sometimes that word “choice” really sucks! Makes accountability (another favorite word) so hard to deny. Those youngsters really don’t understand how good they have it… once they have to start making their own decisions, life becomes so much more challenging. My ADD is at its best in this post… that was a slight distraction from my normal closing… although it’s true… having choices is a very good thing… making choices? Well… not so easy. And on that note!!! Time to say g’night.

Thanks for stopping by today! Stay cool, calm and relaxed.

Gentle hugz.

Tamiko

What is Your Identity? Best Fibromyalgia Blog of 2013… THANK YOU!

What is your identity? I am really struggling these days trying to figure out what it is or rather, who it is I want to be when I grow up.

So, is my identity in what I know or what I share? Is my identity in the work I do, how I raise my children or how I spend my time? Am I invisible or is my true identity visible? Lordy… am I having a mid-life crisis?

I admire people who know exactly what they want in life … and then go for it. I have never been one of those people. I have pretty much lived my life with the Pretty Woman motto as my own… “I would say I’m a kinda fly by the seat of your pants gal, you know moment to moment.

seejanerunI have had a challenging six months. We have moved and I have changed jobs. I have been going in and out of flares the last few months. My walking streak stayed behind with the house we moved from. BUT! On the positive side, I did complete an awesome 5K with my girlfriends and my daughter and god-daughter (I walked, my daughter ran). I went on a couple fabulous vacations to Santa Barbara to spend time with my son and enjoy family time right on the beach. I also went on vacation to Tahoe with family and had the most relaxing time with everyone, while enjoying delicious home-cooked meals in a beautiful location.

I am blessed and I realize there will be challenges, I just need to remind myself that so far, I am still standing (literally, I’m not in a wheelchair or using a cane). I have my children and my husband who always support me, my parents who never fail to lift me up and the rest of my family and friends who surround me with love. As far as my identity… let’s just leave that for another day… when I have more energy (or let’s be real… when I have some energy).

And… on another awesome note… I just realized that I received this award for the second year in a row!! I am very thankful to everyone who visits, follows and subscribes to my blog. THANK YOU!!

Bestof2013

Wishing all of you a pain-free day/ evening. Thank you for visiting! Please feel free to leave a comment, I love hearing from you!

Tamiko

Another Day in the Life… It’s Good to Laugh… at Yourself.

Well hello there… how have you been? I can’t believe it’s been almost two months since my last post. Well, actually I can, I just don’t really want to. Where have I been you ask? I have been traveling through the land of Myself, specifically the area of “Feeling Sorry For”. I don’t really recommend this place, but if you have to go there try not to stay as long as I have. I had been given ANOTHER f’ing diagnosis with no cause or cure and it just put me in a downward spiral that left me feeling like WTF?! Instead of taking this news and putting more emphasis on managing my health I basically went on strike. I stopped doing anything related to all these fun and fabulous no cause/ no cure conditions I have. Literally, cold turkey. No reading, writing,  journaling, looking at my blog, exercising… yeah, I showed… ummmmmm… myself? Yeah, that’s it! I showed MYSELF! Dumb, dumb ,dumb…. I went on strike and who exactly was impacted by this? Me. Oh and by the way… Essential Tremor, this is the newest addition to my list. If you have an uncontrollable shaking of your head or hands then you may want to look into this. I guess having an invisible disease, the thought was… I should have something that folks can see, yeah let’s make her head shake (it’s really more like a nod). Ahhhhhh, someone up there has a sense of humor, I’m just trying to find my way to see the lighter side of this.

On the more sunny side of this place I have been in for the past month, I have been watching my diet. I was also diagnosed with gall stones a couple of weeks after my Essential Tremor diagnosis so I had my gall bladder removed last week. Finally a problem that has a solution! Yes, it meant having a body part removed, but I am really hoping that this resolves a lot of my GI issues I have been dealing with for a long while. In watching my diet, the last few weeks I have been drinking protein shakes as a meal replacement for two meals a day. Incredibly, this has helped a lot. It seems like the only time I feel somewhat okay is when I drink the shakes. Food and I are still having a love/hate relationship. I love to eat, but the food and my body hate each other. This is really uncool, can’t we all just get along?

I have rambled a bit, but what really prompted this post is this funny (well, funny to me) thing that happened yesterday. My first instinct was to tell my husband, but he’s on a short trip away and I didn’t want to intrude on his time away. I would have texted him, but I don’t have the patience to type this into my phone (another device I have shied away from lately). Anyway! Back to my story (I am so easily distracted!). I have been trying to lose weight, the real reason for the shakes… yesterday I am in the bathroom weighing myself and I saw the number on the scale and I was like “What the hell?? WOW! No way I lost that much weight!!” Seriously, I’m standing there and my weight has dropped like 5 pounds overnight. At this point I’m trying to figure out how this could have happened… could it be real? Then I look up (since I’ve been looking down at the scale this whole time) and realize I AM HOLDING ON TO THE TOWEL BAR. Yes, as I’m quite sure you can all relate, standing up sometimes is challenging without some help. Well, don’t weigh yourself while doing this or you’ll go through this same fun experience. It’s like winning the lottery (okay, granted a small one – not the Mega Bucks one) and then waking up and realizing “Nope, still not a millionaire”. At this point I gently let go of the towel bar and the little scale thing moves, moves, moves to that point of reality. I have just woken up. I started laughing and thinking, oh man, I gotta tell my husband this one! I can see him shaking his head at me as I write this. I’d like to say lesson learned, but I’m afraid I’ll probably do that again, so I’ll just say it’s good to laugh at yourself everyone once in a while.

After enjoying some time with my folks, my incisions were screaming in pain (it’s hard to relax or move with all that screaming), I gave in and took some pain medication. I told my daughter this so she was aware and then did a few chores and went to sleep. I was KNOCKED OUT when all of a sudden I hear my door open, not open quietly mind you it was opened with purpose and my daughter comes rushing in and says to me, “Did you hear that? Did you hear that?”. Let me just restate… my husband is not here. My heart starts racing and I’m trying to wake up and this damn fog from the pain meds is holding me back… fear just grabs a hold of me as I try to be the grown up in the room. She continues on, “It sounded like a werewolf…”. Not what I was expecting. I am pretty sure I responded with something like… “Am I awake or is this a dream?”. Did she really say… werewolf? I think maybe she should not be allowed to watch that new Teen Wolf show. I mean, this can’t be a normal thing to rush in and ask in the middle of the night, right? Okay, so I’m pretty sure she didn’t hear a werewolf, but if there had been one, I would not have heard it (another reason why I don’t like to take meds that make me drowsy). So I’m like, “Why don’t you just sleep in here?”. Instead she takes the dog out of my room, goes back to her room and leaves me wide open for attack. I thought my solution was better. I’m completely freaked out, yet I’m so tired I just fell back asleep. Interesting experience, that’s what drugs do for you, put you to sleep so you don’t have to face the world… on that note, maybe I should ask her when she wakes up if that really did happen… but it had to because the dog was clearly NOT in my room when I got up this morning.

I bet when you decided to read this you weren’t expecting this! I hope I’ve given you a reason to smile today.

Stay super cool and remember… one day at time, one hour, one minute. I wish you all an awesome day of wellness and hope!

Tamiko

Waiting… and Waiting…

Waiting. Waiting. Waiting. This is what I am doing this week. I was the lucky recipient of the “oscopy” twins, one up and one down… on Tuesday… seems like  a long time ago, yet it was just yesterday (for me, I’m still up as you can see at almost 2am). The waiting before going in for the procedure was not fun. After drinking that yummy liquid, I thought I was doing alright when BAM! Nausea along with a nice little migraine followed by the chills hit me like a mack truck. I wasn’t able to finish all that stuff. It was lights out and pray for sleep. Thankfully when the nurse asked me “So, did you drink all the Gavilyte?”, I promptly answered with “Yes” and there were no issues as a result of my giving up on the strict instructions.The actual procedure was a dream, with IV in my arm and drugs streaming down the line… I was out. I woke up, got dressed and went home… I honestly cannot remember most of that day. All I know is I am thankful that I didn’t wake up during the procedure!

So, now I’m back to waiting. Waiting for the results of my stomach and polyp biopsies. I am going to stick with the assumption that everything is all good to go. Although at the same time I’d like to hear “Well, you have XYZ, which explains all the problems you are having with all the rumbling and tumbling in your tummy as well as the anemia.” I don’t have high expectations that there will be answers, it seems there rarely are… oh, other than “Well it’s part and parcel with Fibromyalgia… or Depression…” On those days, when I walk out of the doctor’s office, I mostly feel deflated and question my wisdom with going to the doctor in the first damn place. This last round has been fruitful, in that I know I have anemia which is a good reason for my exhaustion of late. What I don’t know is where the blood is going or why this damn flare is going on… and on… and ON.

Oh these are fun times, right? I am working as hard as I can at work and still feel like I should be doing better. It’s tough when you know you used to be so … well … good at your job. Yes, I used to be good at my job. I just can’t remember when that was. I believe it was about 3 or 4 years ago. I’m not sure. I know I have had bursts of goodness, but those are definitely few and far between.

ANYWAY! Here I am. Waiting.

Tomorrow’s going to be the day that I get my results back.

I hope.

Stay cool!