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…

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

 

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

This is AMAZING! 21 Best Fibromyalgia Blogs of 2012…

I am sitting here having a pretty down day… not feeling great. I decided to check out the stats for my blog and the most amazing thing happened. I looked at one of the referring sites and followed the link and yelled out “HOLY SHIT!”. My husband thought something really bad happened, turns around and asks me what’s wrong (with that concerned look on his face)…

I am smiling as wide as ever… a bit speechless. I said to him “I can’t believe this!” Then I held up my laptop and showed him this screen:

Completely unexpected, this made my day… wait! What am I saying, it made my week!!

Thank you Healthline for the recognition. I may just have this smile on my face for the rest of the day…

You all have a GREAT week-end!

Pain Program… Day 2

I have done it. I officially started the Level 2 Pain Program at Kaiser yesterday. It is focused a lot around the concept of amygdala retraining. I have seen programs to purchase out there in the online world, and this program is part of Kaiser’s offering. This is the only Kaiser currently offering to determine the success. So far… I hear it has been extremely successful. I am optimistic. Optimistic for the first time in a very long time.

In talking with my intake nurse, who has also been supporting me for a long time through this process… one of the major difference between the programs I have seen online and this one is that we are meeting everyday for three weeks, followed by 3 weeks of meeting 3 times a week, followed by once a week for 4+weeks. Each session is 3 hours. It’s pretty amazing when you think about it.

We started with introductions, about 15 of us including doctors, nurses, psychologist and pharmacist. Then one of the doctors read an inspirational passage about fear from a book. I must say… it was good to hear from this particular doctor as when I first started this process years ago (after being diagnosed with FMS), I saw this doctor and he was a complete ASS to me. I remember crying after leaving my appointment with him. He is a convert and now understands chronic pain and the effects much better. It’s good to know folks can change.

After the reading, we did about ten minutes of Qi Gong… all of us and then all the medical folks left and the rest of us did Feldenkrais for about 40 minutes. We did Feldenkrais the last time I went through the Level 2 program, but only for a few minutes. This was interesting, not easy for me, but I definitely see the benefit in it. With more sessions, I know I will be able to relax more. It was difficult for me to relax and get into it. I was also having a hard time paying attention to the instructor, just my mind going crazy. I need to learn how to calm my mind down better.

After Feldenkrais, we had a 45 minute group session about a concept. Yesterday was about the 3 P’s. Planning, Prioritization and Pacing. This was ran by the psychologist but about the input from the group. Group therapy with everyone in the room on the same page… we are all in pain. A room full of people who can all relate to each other’s lives.

After this, everyone went for a group walk for 15 minutes… and then ended the day going around the room with parting comments.

I am optimistic (how often do we say that word?) that I am going to come out of this process as someone who can start living a higher quality life.

I have only had one day, I will start getting ready to go back today in a bit. Getting dressed and leaving the house every day will be a challenge for me since I am usually in the house Monday through Friday. I am also thinking about work a lot, so I need to let that go. This program is all about me and about me making my life more about LIVING than just getting through the day.

I can do this.

I wish you all a great day!

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!

Day 30: My Word Tree…

Today’s Prompt: Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests.

Today is the last day of the WEGO Health Activist Writer’s Month Challenge. I did it! As the final post, I have created this tree in answer to the prompt… enjoy!