And the Acting Award Goes To…. YOU! Yes, You with the Chronic Pain!!

These days I feel like I should be going for some kind of acting award. I don’t compare myself to those true to the art, but I certainly feel like I am “on” most of my waking hours. You know what I mean. If you have a chronic illness, you know exactly what I mean. Let’s see… when someone says to you, “How are you doing?”, what’s your response? Me? Well, there’s always the standard response:

“I‘m doing alright...” or I may say”I feel okay…” or

I’m fine…” or sometimes I’ll say

Theatre-stage-curtains-an-001I’ll be alright…” or… or… the list goes on. All of which translates to… “I feel like crap, but I live to get through another day.“.  I depress even myself when someone asks me the question. And, trust me, I’m not saying I don’t want folks to ask how I’m doing, it’s just I never know what to say. Honesty is not the best policy in this case. I don’t really think people should have to hear my truth. In addition, I don’t want to say out loud multiple times a day that I feel like crap. I imagine it would only make me feel worse mentally. Which leads me back to my original statement. I think I am pretty  good at acting. Most of us don’t want the whole world to know how much pain we are in or even that we are in pain at all. To get through the day, we have to put on a happy face so folk see us as functioning people and not just people with pain or disabilities. I don’t want to be the one that people look at and feel sorry for. I want to be the one that is looked at as strong and responsible, caring and able.

Sometimes I think I am so good at this acting stuff, that I convince even myself nothing’s wrong… I can literally act myself into thinking there is nothing wrong with me. Until, of course, I try to live without paying attention to what my body/ mind are telling me. Those are the days that reality slaps me in the face, basically saying, “WAKE UP! Stop just thinking about right now”. I feel like I have to go through the acceptance process of all my medical conditions at least once or twice a week. I know what the diagnosis is (trust me it’s difficult not to know), but when you act like your are completely fine… you act like you are completely fine. If I acted like I was fine while also managing all my medical conditions better, I’d actually be almost fine!

So! What has happened since the last time I blogged?

Damn. Damn… DAMN! I have had tests, more MRI’s, CAT scans, many appts… I did the Prednisone thing. This was the first recommendation to see if it would alleviate the pressure/ pain in my neck (reduces the inflammation). That actually really helped the pain for a few days. I was like a new person, literally tons of focus and energy. It was crazy how good I felt… for a FEW days. Awesome, very much like when I had a epidural while in labor with my son, which literally worked for ONE contraction. There really is nothing worse than feeling the awesomeness of no pain… when you should be in a lot of pain. Only to have that awesome feeling snapped right out of your reach in an instant. So! The Prednisone worked for a few days and then slowly stopped working, but I did end up with the bonus of more pounds on my body. JUST WHAT I NEEDED! yay… (she said super quietly with a lot of sarcasm…)

I had many discussions with the spine surgeon and two separate neurologists and have come to the conclusion that surgery is definitely in my future. With that in mind, I needed a solution for this tremor. None of us want my head to be shaking just out of surgery… that would seriously dampen the entire post-surgical bliss that I’m looking forward to. So! I started a new med. I had a handful to choose from and I made a decision and tried the only one that seemed like it might work with the least amount of side effects (or cause me to have to change my antidepressant)… Well, again, it was good… at first. And then… the side effects kicked in. The kick was a big one. My depression tanked. Tanked as in I fell into that big f’d up black hole. You know, the one that has no bottom and there’s no light at the top to give me hope. It took me a bit to see what was going on. By the time I realized what was happening, I was in too deep. That feeling of hopelessness and despair completely overwhelmed me. I started to back off the meds and ultimately decided I would stop completely. The thoughts going through my head are not worth the benefit of the relief from the tremor. Which sadly, the med did stop the tremor… It’s the choice of bad or deep black hole I’ll take bad any day. That is the end of meds to address my tremor (for now).

So for the last few weeks I’ve been a mess. Working has been like walking through wet cement for hours. (I’m full of analogies today) Attempting to focus with this mental state and my pain levels going through the roof has not been fun. But! I made it through. Today was my first day off the meds and I believe in a couple of weeks I’ll feel much better.

In the meantime, I prepare for my surgery. The mental and physical preparation will take a while for me.

I know God is on my side. With all this stuff standing in front and on top of me, I am blessed with the most wonderful family and friends who stand beside me and on many days who hold me up. I have a job that allows me to work from home, which in turn makes me feel like I am contributing and adding value both at work and at home. I have a plan to address the neck pain/ weakness in my arms and legs. The future is not grey and bleak, it is in fact looking okay. I may be in pain every day and I may suffer from severe depression from time to time, but I am blessed. I do not take the great things in my life for granted.

DSC_0353We just celebrated my daughter’s 16th bday. A celebration that would not have been a success without the help from those closest to me. From the hand-made decorations, to the made from scratch awesome tie dye yummy cake and caterpillar cupcakes, to the candy leis to the cotton candy machine to the best food in the world… this celebration was one to remember… and in less than two months, my son graduates from college. You were all with me when he graduated from high school! Every day is a blessing.

40,000+ visits later, my blog is still going strong because of the support from all of you. I say it again. I am blessed. Thank you for taking the time to read this and leaving your comments and sharing your personal experiences with me. It means a lot to me.

You all win the award for best acting! You do it every day… all day long. It’s not a good or bad thing, it’s just what we do.

Gentle hugz!

Tamiko

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7 thoughts on “And the Acting Award Goes To…. YOU! Yes, You with the Chronic Pain!!

  1. Hi Tamiko,

    I am happy to inform you that your blog has made Healthline’s list of the Best Fibromyalgia Blogs of 2015! Healthline’s editors carefully selected each winner based on quality, frequency of updates and contribution to the community. You can see the full list here: http://www.healthline.com/health-slideshow/best-fibromyalgia-blogs

    We created a badge to help you publicize your achievement: http://www.healthline.com/health/fibromyalgia/best-blogs-badge-2015 We encourage you to embed this badge on your site and share your status with your followers.

    Thank you again for providing a great resource to the Fibromyalgia community! I’m happy to answer any questions you may have.

    Best,

    Nicole

    Nicole Lascurain • Assistant Marketing Manager
    p: 415-281-3130 | e: nicole.lascurain@healthline.com

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
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  2. Congratulations to you and your blog! Totally deserving! :)

    I read a bit further and saw where you might have to have surgery. I don’t know if you’ve had it yet, but I hope if you do, well, I pray that it goes very well.

    I also have an Essential Tremor. I’ve been on a low dose of clonozepam for anxiety for years, so that treats the tremor, but it is not the most recommended drug for that. I met a fantastic neurologist who diagnosed me, but the next week he hurt his back and had to quit being a doctor. He spent hours with me and was most understanding. It’s hard to get a good doctor these days, for sure.

    I also have new spine pain. I have attributed it to the move in January, but now, six months later! Whew! long time to be in severe pain. It has eased off lately, but it comes back. I think I need tests, but they pulled the fibro card, like you said, at least my family doc did, and then, when symptoms worsened, he said go see the psychologist.

    Just so happens, the psychologist I know is intelligent, so I will go see her so she can recommend the doctor stop pulling that fibro card, you know? Even people with fibromyalgia get other disorders and conditions. I think doctors forget this.

    Strangely, with CFS, it is opposite. I can have every symptom and be so sick that I find myself in the doc’s office, even though there isn’t much they can do, but the doctor will suggest every diagnosis in the book other than CFS, even though he diagnosed me, along with several Immunologists.

    Wow. I hope you don’t mind my long comment about my health problems lately, here in the thread of your nice award. I guess your audience knows how it is, and insomnia is bothering me lately, so I popped over to read and was inspired to communicate.

    I am so glad to see you are still hanging on, writing, and keeping your head up. You are always a positive inspiration. I wish you much healing and well days. Just be careful on those good days. I know how it is to over do things on those rare days.

    Hugs,
    Michelle.

    • Michelle –

      I always love to hear from you! You and I have been blogging for many years now. :) You have been there from the beginning for me. I wish I had a psychologist here who I could go to that understood all the crap we are living with. I should spend more time looking into it.

      I’m going to look into that clonozepam and see if that would work for me.

      I go in for my MRI tonight… a bit freaked out about it, but I’ll do my best to maintain my sanity.

      Please keep in touch.
      Hugz!
      Tamiko

      • Hi Tamiko. I hope your MRI went smoothly. Thanks for your kind words. I always think of you when I reflect on first starting a blog, or the wonderful bloggers I’ve met who live with chronic illnesses and who have helped me so much along the way through sharing their pain and what has helped them. You have been an ongoing inspiration. Your gratitude is contagious.

        I haven’t made it to that psychologist yet, but I’m going to soon. I have done a few new things to help my depression, like taking walks in the park where I live. It’s close and very pretty. I ride my bike there a little too, as the roads are flat, so it’s easy as long as I don’t overdo it.

        I hope you are doing okay as I write and maybe your neck is some better. Take good care, and keep on blogging! I love your voice and energy. You are contributing a lot by sharing in this blog and I’m grateful to be one of your followers.

        Peace and Blessings,
        Michelle.

  3. Congratulations on your award! And thanks for all the great resources you have listed here.

    I TOTALLY know how hard it is to have people keep asking you how you’re doing when you’re feeling awful. My go-to responses have become, “Oh, I’m hanging in there,” or, “Well, today is a good/bad day.

  4. Tamiko, I admire you for gritting your teeth and fighting through the pain to try not to let people know how bad it is. It must be tough for you to put on a brave face and tell people that everything is ok when they ask you how you are, and many people would look for sympathy. It is great how you still remain positive even when all the medical stuff tries to get you down. I hope you do feel better in a couple of weeks, and I hope you feel even better than you think you will.

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