Chronic Pain

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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

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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

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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!

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Practicing What I Have Learned… Pain Management

I have had a lot of training about managing my life with pain over the last couple years. It’s not the learning that is the issue. The issue for me is the implementation. The challenge to change. The challenge to accept.

Instead of getting up and out of bed and going straight to my laptop to start working for the day, I need to make a change. I need to wake up and… with intention, get out of bed and do some gentle movement, read the bible and make time for prayer and meditation, eat some breakfast and take my meds… and then, and only then start working. I know this. Actually practicing this is my challenge. It all sounds great, but even writing it makes me anxious. When I get up in the morning, I am already anxious. Anxious to start my day. Just this morning, I woke up and really made myself do some Qigong. But I was anxious, I couldn’t get myself to get into a calm state and after a couple of minutes I gave up. The entire time from when I woke up to when I sat at my laptop, all I could think about was what I wanted to get done this morning. How do I get to that point where the motivation to change is greater than the anxiety?

I am taking this class at Kaiser and I am reading books and I am working on my deep breathing and some (not all) of my exercises… but at the end of the day I am afraid. I am off work for six weeks and you would think I would be afraid about going back to work. It’s not so much the going back to work that scares me as much as it is the going back to life. I am afraid that this is it. I have these expectations that at the end of these six weeks I will be changed and living a quality life. My fear is that, after these six weeks,  my life will still be “just getting through the day”. I want to live my life, not just get through the day.

I realized this week that the problem is… me. I do not say those words with ease. I mean, seriously, I am not a complete idiot (most of the time). I did and do know that I have to make changes to actually see change or in my case FEEL change… but I am talking about putting in daily practice what I have learned… what I know I know… it’s some hard work. To admit that I am the only thing holding me back… well… it sucks. I might have had this epiphany before. The great thing about not having a memory most of the time… is, well, not having a memory. I realized as I decided to get organized last night with all my paperwork from my classes at Kaiser from 2010 and today – shit! I have learned this before. That kept coming up in my mind over and over again as I was going through my stuff. I am not quite sure why I was so surprised… maybe frustrated and a little irritated with myself are better words than surprised.

So! What am I going to do about it? Well…

  1. Breathe
  2. Put together my Wellness Plan (what I will do on a daily basis)
  3. Breathe
  4. Make an agreement with myself how I will implement this Wellness Plan. Let’s be realistic, it’s been so overwhelming for so long, let’s (let’s?? I mean to say I will) take this in smaller steps so I can be somewhat successful.
  5. Breathe
  6. Take the first step…

Last night I also spent time revising my blog to incorporate more information in my Tools & Resources page as well as the page I recently added, Bay Area Resources. This also reminded me how much I need to incorporate practicing the tools I have learned over the years.

I will be patient with myself. It’s not going to be easy. I love the quick wins. Now it’s time for the long-term thinking and, Lord have mercy… practicing, practicing, practicing!

I can do this (repeat. repeat. repeat.). Seriously, I can do this. I will prove it to myself. I am the only one who matters in this instance as no one else can do this for me.

Thanks for listening and appreciate any thoughts you have from your own experiences.

Stay cool!

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Thank you! HAWMC’S Most Riveting… Wow!

I woke up this morning and checked my blog and wow! I have hit 11,000 hits… this is so incredibly amazing to me. I would never in my wildest dreams imagine that people would read my blog, much less have 11,000 visits.

THANK YOU!

Just as incredibly cool to me, yesterday I received an email from Amanda Dolan, Editor at WEGO Health. I was awarded a Superlative Badge for the Most Riveting post in the 30 day writing challenge last month. I am proudly showing it off (on the side of my blog as well :) ! If you click on the badge you will see the rest of the winners.

Awesome day… surrounded by the most cool and awesome people on the internet! Thank you for the motivation and inspiration.

Stay super cool!

Tamiko

Here’s the posting that received the award for Most Riveting:

Day 2: Of all the things I have lost, I miss my mind the most…

For more information on WEGO Health, check out any of the following:

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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!