Tag Archives: Pain

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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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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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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!

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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!

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Day 8: Best conversation I had this week

I am participating in the Health Activist Writer’s Month Challenge. Please visit WEGO Health’s blog and the WEGO Facebook page to find other writers tackling the same topics—or sign up for the challenge yourself!

 

Rinnnnnnggggg (not really what my phone sounds like since it’s a mobile, but I have no idea how to get that translated here)…

Me: Hello?

Man on phone: Hi this is Dr. X calling, we have a phone appointment scheduled today. How are you doing?

Me: I’m doing okay, how are you?

Dr. X: Well I’m doing good. I understand you had an appt with your primary care physician and she has referred you back to us here at the Pain Clinic. So, it doesn’t sound like you are really doing “okay”.

Me: Well, yeah… I never know what to say when people ask that question, it’s kind of a default answer. I have been in a horrible flare for the past few weeks. I don’t really understand what the trigger was, I can normally attribute it to the weather or an event. This time it’s has come and doesn’t appear to be going away… thus the appt with my dr. Normally I don’t go in or call because I know there’s nothing she can do for me.

Dr. X: Yes, I understand. With your situation, it’s a good thing that we are talking again. I know how hard it is to manage day to day and your right, your primary care dr. is probably at a loss. I spoke to Awesome Nurse (I’ll call her that, because she is) about your case before I called you and she mentioned what the two of you discussed the last time you spoke. We both felt it would be good to talk to you about some of the changes going on here.

Me: Okay.

Dr. X: Since you went through our Pain Program, we have made significant changes. We have a new Psychiatrist here and we have revised the program completely. We have introduced a group support structure and incorporated movement strategies into the program. We have very good results and the success rate so far is pretty high.

Me: This sounds interesting… and the conversation continued for another 15 minutes.

When I first saw this prompt for the Health Activists Writer’s Month Challenge, I was a little wary. More than a little, I was thinking this is one of the days I’m going to miss. No conversation stood out that I wanted to share… no good conversation I should say. My dr.’s appt was pretty disappointing earlier in the week and I’ve been in so much pain I haven’t really been conversing. This call that happened today gave me hope. Dr. X explained this program and how it works, the intake process and really gave me a great feeling. He said he’s seen people that have been in pain for a very long time, people like me he said, that have tried everything and he felt like they had really seen life changing differences after they completed the program.

He said that people on medication and rely on it, people that want to get off their meds, people that don’t want to take meds… basically whatever choices people have made about meds, it doesn’t effect their participation in the program. He told me that they don’t judge or discriminate, at the end of the day their goal is for people to be able to live better lives. A holistic approach, not just to “fix” something, but to change the way we are able to live. Part of the intake process and the program overall is to help determine what each individual needs, whether it’s medication or emotional support or whatever.

Like I said… I have hope and I can feel that sunshine again. I trust these people. They gave me life before. The Kaiser pain program is amazing. If you have one, and you are a member… I really encourage you to get a referral and jump in with both feet. You will be in a pain friendly environment where you will not be judged and most important… you will be BELIEVED.

I’m looking forward to this opportunity. I’d say wish me luck, but I have faith and that trumps luck every time!

Thanks for reading.

Tamiko

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Day 7: TUI… Talking Under the Influence

Do you TUI? I was thinking in the car today about the effect pain has on my communication. I realized I TUI, “Talk Under the Influence” and that’s not really a good thing. I’m talking about under the influence of PAIN. Sometimes it’s mental pain, but most of the time it’s physical. I get that there are not a lot of moments when I am not in some kind of pain. I try to manage my way through and be the best person I can, but being my “best” does not always result in … well… even a “decent” conversation by any standard.

So what happens? Most the time I fake my way through conversations, I have talked about that before. That works in most situations. Where it doesn’t work is in my relationship with my family. I generally muddle through and after think to myself, “Why did I say that?” or better still, “What did I just say?”. These moments are not fun for anyone. Reacting in a negative way to a simple question or blowing up over nothing… a better word to use would be – OVER reacting. In this situation everyone is frustrated. My kids look at me like I’m an alien from another planet, while I’m wondering (in the moment) “What the HELL is going on??”. I know I’m under the influence when the conversation goes:

Me: Please go XYZ

Child: ok

Me (5 minutes, okay maybe 2 minutes later): Why haven’t you XYZ?

Child: Chillax mom

Me: WHAT? What did you say to me? Why are you talking to me like that? Why haven’t you done what I told you to? When are you going to do it? Screw it. You’re grounded!

Child: Why do you always get so mad at me? I didn’t even do anything!

Me: … well words can’t really explain how I feel at that moment, mostly I think my heads going to pop off my neck at that point… until about 10 minutes later when I’m sitting there, alone. Wondering… wondering what the hell just happened.

Talking Under the Influence can really hit at anytime. I don’t usually know I’m doing it. The most telling factor is when I’m mid-sentence or mid-thought and I forget what I’m saying or even what the conversation is about. I can’t figure out the next word. Foggy brain in the purest form.

I get that relationships are challenging under normal circumstances. Add in a chronic illness, both pain and depression, and it’s not really a recipe for success. It takes patience and hard work. Work requires energy, which most of the time is non-existent (I’m talking about never having energy… work? That’s always there!). A pretty dismal picture when you think about it. I’m sure I’m not the only one who wants to give up at times. You have to really play the entire movie out at this point… so…. you throw in the towel, what do you have left? In my case, I’d lose my support system… but most importantly I’d lose the love of my life. Is it possible to start over or maybe even… refresh a relationship? To give up, to me, means that I have let this shit win. I won’t allow that. I realize most relationships end over issues with communication. I know this is always going to be a challenge, given our circumstances… the bottom line is I have a choice. I have a choice whether or not to give up and walk away (albeit slowly walking with a cane) or to fight for what is important and totally and completely worth saving. Don’t give in to those bad moments, step away and start over and try again. I have to keep the faith and fight (crazy expression… fight, that’s what got me into this situation to begin with, isn’t it? :).

It’s challenging to live life within the rules, dreams and goals I have for myself, when this outside shit keeps wanting to take over. I can have a great day, get out and about and have a fun joy-filled day… almost always, the following few days are filled with pain reminding me what I have… as if I’d forget. It’s most difficult to keep my head up during those days. I get angry and frustrated and it certainly doesn’t motivate me to keep going. I can spiral down that slide to the bottom of the well, far easier than I can climb myself out of it. It’s non-nonsensical. It’s important to keep perspective. What do I have in my life? I have family and friends who love me, I have the best kids in the world (I really do) and a wonderful husband. Things are tough and will be tough, once again it’s how you get through this shit that makes the difference.

I may TUI, but if the people around me realize what I’m working with, I just keep praying they’ll continue to love and support me. Keep in mind, if you can look back and realize the moments when you TUI, it may help you understand where things may have gone wrong in a conversation. Admitting that out loud to the people who you have had those conversations with… well, that’s another story! :)

Best of luck. Thanks for reading!

Gentle hugz.

Tamiko