fibromyalgia

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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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Happy Sunday…

Sooooo… first things first – I went for big changes today. I changed the theme of my blog. I haven’t done this for quite awhile now, but I decided I wanted to add some color to my life and thought I’d start with my blog first. Also, I added along the side of the page a new widget to provide book recommendations using Goodreads (http://www.goodreads.com/). Looks to be a pretty cool app to use.

I’m trying to do better about updating my blog to share tools and resources for folks, I am working on it. I have a list of stuff I want to add/ revise. Little changes here and there every few days (depending on my energy).

I have been off work for three weeks participating in this pain program at Kaiser. Let me tell you… this is no easy task. I have been just as tired, if not more, than when I was working full-time and trying to get through the day. The anemia isn’t helping (it’s my mortal enemy these days). I want… I am almost determined to get to a quality life. I say “almost” because I know it’s a lot of work and some days I just don’t feel so up to it. I want to be more determined than anything to get my health in order, but I am so flippin’ tired it’s hard to even get the energy for the “determination” itself.

This anemia is kickin’ my ass… the iron pills are making me sick which is exacerbating (big word) the pain, digestion and mental health issues I already face on a daily basis. I often wonder what the hell I am doing. “Here, take these pills, they will make you feel better. You will have a lot more energy once they kick in!” Seriously. I listened and I am following instructions, but feeling twice as bad does not seem like a solution to me. Ugh… think positive, think positive, think positive.

This cartoon really hits home for me (and I’m sure a lot of you). I take the iron pills which then leads to taking an anti-nausea pill which then leads to really wanting caffeine (although I don’t do it) for the extreme exhaustion from the anti-nausea pill. I really lived in this world when I was taking all the pain medication before. Thankfully I stopped all that madness. I know meds work for a lot of people, it just wasn’t working for me.

I know I had something in mind to focus on when I started this posting… I just cannot remember what it is… All I can do at this point is smile about this constant forgetfulness. Well I could cry, scream and shout but that wouldn’t do any good, now would it! So… I think I’ll say have a great Sunday and go rest for a bit.

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!

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Happy Mother’s Day!

Today’s the day for all of us to remember how amazing and blessed we are for our mothers. I have the most amazing mom. She is the strongest woman I have now or ever had in my life. Up against the craziest, worst battles, she stands strong and ready to fight, no matter what the challenge. I wish I had that kind of strength.

I realize, looking back, how independent and awesome she was as a mom. She would drive us, by herself from Oregon to L.A. without the blink of an eye. I remember driving in this storm that scared the hell out of me, raining so hard I struggled to see too far in front of the car, and she drove on. In my eyes, nothing got in the way of what she wanted. My mom cooked every day, did all the shopping, managed the house (and I remember the house always being clean)… and she still made time to craft and make the most amazing things.

I never realized how blessed I was to have this beautiful, crafty and smart person in the house. I was such a rebellious asshole, I didn’t stop to think about how much I could learn if I just stopped fighting my parents. I did everything I could to get out of the house as soon as I could… teenagers! Now that I have two, I really feel remorse for how I acted when I was young.

Skipping right to today’s life. My mom struggles with diabetes, restless leg syndrome and living in a post-kidney transplant world. She has had pain for as long as I can remember… she gave up her keys to drive a long time ago. Giving up the keys meant giving up her freedom and independence, I cannot imagine how difficult that was for her. Before that, I don’t remember a day where she ever just stayed at home. Not one day.

Aging is a bitch. You would think after living for so long, the reward would be to retire with your body and health intact. For many of us living in this world of chronic pain and illness, that is certainly not the case. After working our asses off for years, here we are just trying to get through each day, hoping to have the ability to walk around the block one time… with a smile (not a grimace).

I admire my mom. I still hope to one day be like her. She can make me crazy with frustration, but at the end of the day… she makes me laugh like a hyena and smile each and every time I spend time with her.

I wish all of you a most memorable and special Mother’s Day. Today’s your day to sit back and relax… be thankful for what you have now and enjoy.

Breathe.

Thanks for stopping by. Take care!

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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!