Great Fibromyalgia Resources Available!

Today I was reading an article in Medscape entitled, “Fibromyalgia: The Latest in Diagnosis and Care“.  I, like many of your I’m sure, have an extremely short attention span. For one reason or another I actually read this entire article… and thank goodness for that! At the very end Dr. Clauw states, “FibroGuide is a free CBT program for FM patients that has been shown to be effective in a clinical trial and can give patients access to CBT treatments to which they might not otherwise have access“.

While reading I realized it’s a good time to remind every one of some resources that have helped me and may, in turn, help you. So enjoy and I hope this information helps you in some small or even better BIG way!

All of these resources, and much, much more, are available on my Tools & Resources page:

FibroGuide: Take the time to check out this link, it’s not just a guide, it’s an application that provides personalized steps to help resolve the specific symptoms you are struggling with at a given time (including tips, worksheets and audio exercises!). This  Symptom Management Program for People Living with Fibromyalgia was adapted from the ongoing work in patient education for Fibromyalgia led by David A. Williams, PhD, within the Chronic Pain and Fatigue Research Center (CPFRC) at the University of Michigan.

Knowledge Center: Fibromyalgia, Chronic Pain & Depression

Here are some “best of” compilation pages:

wellnessworkbookI created a couple different journal pages to help me track my progress, you are welcome to use… I hope it helps you!

For pain relief… laughter is the best medicine! @TheBlogess is AWESOME and when I am down, nothing makes me laugh more than when I read her blog…

Life is Only Getting Better from this Point…

Lord have mercy!

Those three words basically sum up everything I need to say for today’s post.

Tomorrow marks the two-week point after my Anterior Cervical Discectomy & Fusion (level C5-6 ) surgery. September 4th was a momentous day as my husband and I also celebrated our 20th wedding anniversary (a total of 28 years together). I figured only good things could happen if I scheduled my surgery on that day. As I look back on the last month my surgery is only a blip on the screen of events that have occurred. I had a close friend and second mother to me start chemo, a couple of family friends have had scares with what we thought initially were strokes (thankfully the final diagnosis was not as serious), another friend had to fly over to Hawaii to move her mom to a senior facility, a very close friend’s mom had a stroke and we lost her shortly after, my folks lost a friend and a cousin in the same week… another very close friend suffered a loss in her family… the hits just keep coming. It’s all a reminder that tomorrow is not promised. A reminder to live everyday like it’s your last. I can’t imagine supporting my mom through chemo or putting her in a senior facility (not even mentioning the fact that a flight is required every time you want to visit) much less suffer the loss of her passing. The fact that she is 15 minutes away and her health is somewhat stable is a blessing.

I know that my surgery in  no way compares to the life changes other folks are going through. I am going to get better. The surgery is going to make me better, whether it’s mentally or physically. By mentally, I mean I know that the pain I experience is not related to the cervical stenosis. That issue is resolved. Any pain I experience going forward is likely going to be due to my Fibromyalgia. I don’t have to spend any mental energy wondering about it. That said, I thought I would share some of my experiences with you Fibromites in case you face the same surgery. It’s not something to take lightly. I had some very difficult days post-surgery (my husband can attest to this, I think he’s still recovering from it as well). The weeks before the surgery my insomnia decided to drop in and pay me a visit. I would fall asleep and wake up a couple of hours later and sometimes I could go back to sleep, other times I would either read, just lie there and stare at the ceiling or get up and start working… nothing like starting my workday in the middle of the night!

As I started to type this the other day, I was looking at a clock that said 2:58am (ummmm when I actually typed this sentence it was in fact 2:58am). Instead of sleeping I ended up watching the Dreamgirls movie and attempting to draft this post. When I came home the first few hours were okay. Fast forward to the night and things starting to spiral… first I took a shower, which completely depleted my energy. Then my husband tried to change my bandage… this was a mistake.

Let me just digress for a moment. While in the hospital everything was okay. I had an IV that they kept shooting antibiotics, anti-nausea and pain meds in for the first 24 hours. I didn’t get much sleep the first night but it wasn’t for lack of trying – the nurses and dr.’s kept coming in every hour or so to check on me. I was sooooo tired on day 2, when the PT person came in to get me up and walking and teach me exercises – I literally fell asleep in the middle of an exercise. I had to finally ask her to come back later. Since I didn’t complete the PT, they couldn’t release me so I ended up staying another night. The second night the nurses left me alone most of the time so I slept for hours and hours. On Day 3 I woke up feeling pretty good and I wanted to come home. This, my friends, was my first mistake. I should have waited another 24 hours. I wasn’t ready.

freak-out-catBack to the first night at home… as soon as he started to take the bandage off, I started going into a full-on panic attack. I freaked out… and when I say freaked, I mean F-R-E-A-K-E-D out!! I had to literally talk myself off that cliff, use every coping skill I knew to calm down. I had so many places where they had used tape at one point or another that my skin felt raw. The pain I felt as the tape was getting pulled off literally felt like my skin was getting peeled off (sorry for that super gross reference). Okay. I know I’m being overly dramatic, but that is honestly what was going through my head. In my mind, the tape was going to pull all my stitches out and I was going to have to go back to the hospital and have them fix me up. Okay, I now accept the award for drama queen with pride (okay not pride, I’ll just take the damn award).

At this point my nausea went into full swing. This was my biggest issue from the moment I got into my hospital room and they had my pain under control directly after the surgery. They had tried a couple of anti-nausea meds until they gave me one that worked. When I went home, I didn’t have any anti-nausea meds… BIG F’ing MISTAKE! Oh my Lord. My husband tried calling the advice nurse to deal with it and they gave me a prescription… for something… that didn’t work! ugh.  I called again the next night because I was miserable and the advice nurse talked to the spine dr. on call who advised me to go to the emergency room. Ummmmmmmm… that’s not gonna happen. Tip: If you are having surgery on a Thursday or Friday and you go home over the week-end… make sure you have all the meds you need BEFORE you leave the hospital.

schlaflos

The picture I finally decided to go with…

Day 3 – miserable… called the charge nurse for the spine clinic and asked for the drug I had been taking in the hospital for the nausea and my husband went back to the pharmacy for the second time in 24 hours. I also decided to back off the pain meds a bit and stop taking the stool softener (okay, I apologize again for too much information). The combination of these three things finally resolved my stomach/ pain issues and things started to get a bit better… except… except… well except for that damn insomnia. (Okay, seriously… I went to go look for a picture to put in my post to represent insomnia and as I did that I was in a group text with some friends… then for one reason or another I decided to go look at Facebook, which I never do anymore and ended up going through my timeline and sending my mom a life on one of those FB games which resulted in me actually playing the game… and then I checked my email… and then I realized I was in the middle of writing this post and I need to finish it! Geez Louise… ADD at its best!!!!! Annnnndddddd of course, the best part is I still need to find the picture I want to include.) As I was saying… the insomnia was kicking my ass.

Days 4, 5 ,6 – let’s just say that being up at 2:58am was normal for me. I would do whatever it took to finally fall asleep sometime after midnight… I’d wake up an hour or two later and basically that was the extent of my sleeping hour(s). Miserable doesn’t even begin to describe how i was feeling. Walking zombie… very frus-us-trated (that’s how my daughter used to say it) walking zombie… but I was trying not to complain because my nausea and pain was pretty much under control. I watched a lot of bad tv… walked around the house, moved from the bed to the couch to the other couch to the recliner to the couch… you get my drift (I love to say that).

Days 7, 8 – I gave up… called the charge nurse again for the spine clinic and she referred me back to my primary care physician. Ummmmmm, can I just tell you that I almost lost it on the phone with her? Not her fault, she did the right thing, but my frus-us-tration was getting the better of me. I am very thankful to Kaiser and their staff, they really do an excellent job. My PCP got back to me within an hour on a Friday… at 4:30pm… and by 6:00 my husband was back on the road for his 3rd trip to the pharmacy since I came  home. My PCP gave me two different meds to try (I love that she gave me options). I tried the Restoril out and on the first night… I slept for 2 1/2 hours. On the second night I took the Trazodone and at 4am I gave up and took the Restoril and slept again for 2 1/2 hours… this was the night I watched Dreamgirls.

Rainbow womanDay 9 – SUCCESS!!!!!! I doubled the dosage of the Restoril and ladies and gentlemen… taadaaaaaaaa!!!! I slept through the night. Everyone in the house celebrated. That’s a lie. My husband and I celebrated… all day long I walked around the house shouting, “I SLEPT THROUGH THE NIGHT!!!!!”. It was like the first time the kids slept through the night… you know the joy I’m talking about? I felt like a brand new person. It had been months since I had slept through an entire night.

So… this is a super long post, I hope you don’t mind. I’m now on Day 13 and I’ve been sleeping pretty well, managing the pain and nausea and basically feeling a bit better every day. I’m on my way. Tomorrow I get to leave my house and go in the car for the first time in two weeks. I am going for my first post-op appointment. I’m hoping they clear me to at least ride in the car for short rides. I hope to go back to work sooner rather than later (I mean in a perfect world I would not have to work and I’d just scrapbook and go to the beach and swim in my olympic size infinity pool at my beach house big enough so all my friends and family could stay with us at the same time… “and now we return to our feature presentation - Reality“). I’m not ready to work just yet, I still lay down most of the day. But I feel pretty good.

In addition, I’m proud to say that in the last month, my son got his driver’s license and started a new job, my daughter started her junior year in high school and she got her driver’s permit and I am surrounded by the most amazing, supportive, loving family and friends a girl could ask for!

Thanks for hanging in there and sharing this experience with me. Things are only going to get better from here. I believe it.

Stay cool, stay chill, stay calm and pain-free.

Gently hugz!

Tamiko

PS. Did I mention… I officially started menopause this month. Watch out family, here I come!!

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

 

“Frozen” in Time… A Day to Remember…

This past week-end, I did something unbelievable… I went to see a movie with my mom and my daughter. I never imagined this was a possibility. I can’t remember the last time I went to see a movie with my mom. Her vision has declined over the years and she has never been a “go to the movie” type of person (unless we go WAY back to the drive-in days). So I’m sitting at dinner with my family last week and I hear my mom and Kiyomi talking… my mother is telling Kiyomi she’d go see this movie with her… I thought I was hearing things. No WAY did she just tell Kiyomi she’d go INSIDE a movie theatre and watch a movie. What? I stopped asking to see a movie with her because she was always worried about not being able to see. This was an opportunity I was not going to miss out on.

frozen

So … on Sunday, my girlfriend, my mom, my daughter and I all went to see Frozen. I honestly had no idea what I had signed up for. I hadn’t really seen previews and had no clue what the movie was about. I was really nervous about getting my mom inside the theatre and seated so we went early (or we attempted to go early but the theatre box office and doors were very late opening). The theatre near my parent’s house was perfect. In fact everything worked out perfect! The handicap parking was literally yards from the entrance… the handicap seating was perfect… the popcorn was awesomely delicious… I was sitting behind her and Kiyomi during the movie and I would keep looking to make sure she was okay… it was a little emotional, if I’m being honest (which I always am when I blog!). Seeing my mom and Kiyomi sitting next to each other watching the movie was a beautiful thing. Just seeing my mom enjoying herself as she watched the movie… well, like I said, I was a little emotional. I wanted to bottle it up so I could remember the moment… the feeling… forever. AND let me tell you what made that day so… welllll… the only word that describes it is… PERFECT! My mom said it was the best movie she had ever seen (it was a very good movie). There’s nothing more satisfying (or emotional) than seeing my mom happy.

its-not-happy-people

That day made me start to think… My life has been crazy. There’s no doubt I need to get back to a healthier/ happier me. It’s so easy to get caught up in the wrong priorities… to forget what’s important in life. And, not just what’s important, but what is a privilege and a blessing. Being able to spend time with my parents is definitely that. Having my children spend time with their extended family is a blessing. The fact my brother and my father rarely miss any soccer games and they make our kids a priority… we are blessed.

2014 has just begun… one of my goals for this year is to take 30 seconds out of each hour to just stop and remember what I am thankful for in that moment. It’s not easy to remember to do, but I have the rest of this year to be successful!

I hope that you all have many blessings in your life and that you are making positive changes to make you a healthier and happier person. One day at a time, right? Or for those of us that are dealing with chronic pain… one minute, one hour at a time. Don’t let stuff get you down, look for the good and let go of the bad.

Big hugz!

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

Your Feedback Please… My Latest Wellness Journal for Chronic Pain

I only have so much brain power. I mean, as much as I’d like to multi-task, learn something new every day, solve problems of all sorts… I only have so much brain power. So how am I using it these days? I’ve been spending a lot of time creating a Wellness journal of sorts. It all started when I was participating in the Pain Program at Kaiser. I needed something to help me transition from this program to the real world where there was only me. Only me to hold myself accountable, not a support group every day or the doctors I don’t want to let down… just me. I have to continue on this path to a quality life by doing daily exercises, working on my diet, managing my stress with meditation and relaxation exercises… practicing everything I have learned! Just thinking about it doesn’t work for me. Writing down what I have done enables me to hold myself accountable AND celebrate my successes.

So… I created this document to hold myself accountable. It’s similar to the pain journals I have created and posted in my Tools and Resources page. There are many differences though, for one it’s not just a daily journal, it’s also a tool to help me figure out what areas of my health/ life I need to address that are out of balance. I created worksheets to identify my short and long-term health goals, my plan for what to do when I’m in a flare… I included a Quick Reference sheet with exercises that I use on a daily basis. It’s a work in progress. Here’s the break down of what I have included in the set so far:

  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. Daily Wellness Journal: worksheet for you to document each day; your exercise, food, pain level and how you addressed your pain, what you are grateful for that day and memorable moments/ accomplishments.
  6. My Priorities for Today…: worksheet to document your personal and work priorities on a daily basis.
  7. Automatic Thoughts Worksheet: template to help you manage your stress and negative thoughts.

So far, with a much older draft, the Kaiser folks have been encouraging me to publish this Wellness Journal. It’s a little intimidating. But it got me thinking. I want to keep working on this. I want to create something that anyone with chronic pain or any type of health issue can use to improve the quality of their life.

I’m excited about this. I’d love to get feedback on what I have created so far. If you are interested in helping me by reviewing, testing and giving me your honest feedback – I’d love it!

Shoot me an email or leave a comment here and I’ll get in touch with you right away.

Thank you!

Tamiko

Day 26: Health tagline… Invisible Illness… Visible Me.

Today’s Prompt: Health tagline. Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!

my foggy brain

invisible illness… visible me.

My life with Fibromyalgia, Depression and ADD.