Amazing… MyFoggyBrain and The Mighty’s eBook

I still cannot believe people want to hear my voice… or rather read my thoughts I should say… and to get asked if I want to contribute to a book, magazine or guest post on someone else’s blog? Well that is beyond my ability to comprehend. It’s amazing is what it is. I started this blog years ago when I was at my lowest point. When Fibromyalgia was not on commercials for pain meds… when it took many years to get a diagnosis – while during that time I thought I was crazy. As far and awesome as the knowledge and acceptance of Fibromyalgia has come, there’s still a long ways to go. I look forward to the day I go to a doctor with an issue and I don’t get the standard, “I’m sure this is because of your Fibromyalgia.“. How crazy is this? It took years… YEARS… to get the diagnosis after seeing a crapload of doctors. It took years for my own primary care physician to finally acknowledge/ say the word “Fibromyalgia” during a visit… and now every time I go in, it’s the first and pretty much only thing I get as a result of whatever the hell is going on with me. And like all of you out there with chronic pain, IBS, depression, anxiety… I could go on and on… you NEVER (as in NEVER EVER EVER EVER!) call a doctor much less schedule an appointment with a doctor unless you have been experiencing an issue for a long time and that little voice (or big voice if your husband/ family member is involved) tells you it’s time to see a doctor. And I’m sure you often get the same result as me… nothing but frustration. So! As I was saying, I look forward to the day the doctor looks deeper and doesn’t just see Fibromyalgia, but sees me and the potential for other issues or even just spends more time understanding what’s going on and makes me feel like I’m being heard. I don’t want my doctor to feel sorry for me, I want my doctor to work with me. I believe those of us who live this life know a lot, research how to manage living with chronic illnesses, go into the doctor’s office with almost more knowledge than the doctor. That’s how it is for me. I hold out hope that one day soon things will change.

Wow, I totally did not intend to go into that rant. Every time I think about my journey as it relates to the medical world, there’s a definite level of frustration. Don’t get me wrong, I have had some super awesome doctors and counselors through Kaiser’s pain program. But there are only a few of those in comparison to the vast majority.

Back to the reason why I started this post… you all know how easily distracted I get so thank you for bearing with me! Anyway… In the last week The Mighty’s Real People, Real Stories: Fibromyalgia E-Book was released. It was an honor to contribute one of my past blog posts to this book. I hope you take the opportunity to check out the book and read through the many stories.

Everyone has their own story to tell based on the journey they have been on. Don’t ever hesitate to start your own blog, write your own story – focus on the things that make your life worth living. We have our good and bad days, but I believe it’s important that we uplift each other out of that black hole we can so easily drop down in. That’s become my purpose with this blog… I may vent and feel like crap, but at the end of the day it’s important to find something good to say. I have to try to find something in my day that’s positive! You do the same.

Thanks for dropping by. Please feel free to shoot me an email or leave a comment. I love to hear from you!

Gentle hugz,

Tamiko

BTW… my new obsession is bullet journals. I can’t wait to share my experience and how much I am loving it! Stay tuned…

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Happy Fibromyalgia Awareness Day!

Today is Fibromyalgia Awareness Day. For me, it’s a reminder of how far I have come since I was diagnosed. From that day (let’s call it D-Day) many years ago to today the amount of resources and information available at your fingertips is infinitely better. I remember going to the bookstore every month or two and literally purchasing every book there was available on Fibromyalgia… I couldn’t get enough information. These days I am not such a voracious reader of the subject. I just live my life to the best of my ability… it’s a part of me. I realize I will have this for the rest of my life and for the most part I have accepted it.

There have been days (like yesterday) where I get so frustrated I want to walk away from this life and just keep walking into the sunset never to return. Seriously?? How far would I get? After about 1000 steps I’d have to call someone to come pick me up and ask them to drive me into the sunset… which defeats the purpose… and takes away all the dramatic effect. But you get it. It’s like Day 90 of feeling like shit every other day.

Disney-Pixar-Inside-OutHmmmmm… could it be the stress? There is a lot of that to go around. I know what I should (and shouldn’t) be doing. I have all the information and tools at my fingertips but I am struggling with the motivation. I have no energy… did you see that movie Inside Out? Sadness has taken over… Anger and Fear are fighting to take over. Where the hell is Joy?? She needs to find her strength and come out of hiding.

There’s so much going on in my head all the time I can’t remember having a moment of quiet. I know part of my frustration these day is the constant high pitch tone that never goes away. I lie down at night and there it is. I wake up in the morning and it’s like “Good MornEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE…” and it never gets to the ‘NG’.  I’m like, JUST FINISH THE DAMN WORD! How hard is it? Good MornING, say it with me… GOOD MORN-ING!!! And then I realize I am yelling at myself… in my head… and I have only just woke up. Wow. And for a few moments Disgust walks in and just shakes her head. But this high pitch sound… it’s stuck, like a needle skipping on a record player (remember those? God I miss my old stereo with a record player and tape deck!). If I could just pick up the damn needle and stop the madness… andddddd let’s give a warm welcome to the latest diagnosis to join my life… Tinnitus!! (I really tried to slam the door in the face of this most recent guest, but Tinnitus just planted themselves on the doorstep and wouldn’t leave… RUDE!)

When I got out of bed this morning… that’s the other thing, when did 5am become my normal wake up time? Geez how easily am I distracted this morning!! Anyway… when I got out of bed this morning I thought about how it’s Fibromyalgia Awareness Day and I thought it’d be a great day to remind folks of the Tools and Resources out there. There are a lot and I quite honestly haven’t searched for new sites lately… but here’s a reminder to check out what I have found and feel free to share what your favorites are. I also have some tools that I have created that you are welcome to use:

It is a day of celebration! Fibromyalgia can be overcome… it’s frustrating and obviously very painful, but it’s not a death sentence. Do better than me! Eat right, exercise your body and mind and most important… laugh, smile… find your blessings throughout your day and be grateful. Today I am grateful that the medical field is more accepting that Fibromyalgia should be treated by a medical doctor, not a psychiatrist. It’s not in your head people, this is real. I am grateful for my family, my friends and the wonderful weather. I am grateful for those of you that have taken the time to read my post today.

I wish you all a pain free day. Be blessed!

Gentle hug,

Tamiko

No Pain… No… Fun?

My mind has all these thoughts flying around… I have started and stopped writing for the last couple weeks so many times, I’m not even sure what I’m trying to say. So I decided to do one of those “stream of consciousness” posts… whatever is on my mind I’m going to write about today. Reader beware… you’ve been warned. :)

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This amazing rag quilt was made for my daughter’s 16th birthday by my good friend at Williamsville Arts

In the last couple weeks I have learned how to sew… seriously. A very, very close friend came and stayed with me for a few days and she taught a few of us how to make rag quilts. It was the best time I’ve had in a long time. We literally got up in the morning and worked from morning until late at night. There was great food, great conversation and so much smiling and laughter in the room that it didn’t matter how much pain I was in. The pain was worth it! You’ve heard of, “No Pain, No Gain”… well I think my new saying is going to be, “No Pain, No Fun”. I’m good with that. I will endure the pain if it means I can spend time with friends and family and have a fun time. There may have been physical pain, but there was definitely no anxiety because it was just a small group of us, everyone is low maintenance and easy. Hanging out with no anxiety is an awesome thing. You know what I mean… you can be in a room full of people that you know and there’s still a level of anxiety that is hard to ignore. For me, crafting with friends is always such a great time. No depression… no anxiety… no grey clouds hanging over my head… perfection!

There was definitely pain. I was also able to get through the pain because I started and ended my day with my husband putting this Warming CBD Muscle Rub all over my neck, shoulders and back. I was asked to give it a try and I’ll tell you, this stuff is pretty awesome. Now every time I have significant pain, I put this stuff on and it really makes a difference. After having tried so many things for my pain, I’m pretty hesitant to try anything new… now my husband is asking me when I’m going to get more. This is the first time in a long time I’ve used something this much. The sewing week-end was a great test. Each morning and night I was in a pretty significant amount of pain. We were sitting in chairs in front of our sewing machines for hours and hours. I could barely move… If you are looking for something new and all natural to try, you should give it a try. The folks at the Fay Farm are very nice and I’m a believer now. I’m not getting anything out of recommending this… I just know that there have been many times that I wished someone would just tell me what worked/ didn’t work for them. I’m not really going to say what didn’t work because I don’t want to down anybody’s products (and honestly just because something doesn’t work for me doesn’t mean it it won’t work for someone else)… but I will share the stuff that works for me. Deal? Deal!

And can I just say that after this week-end of awesome fun and laughter… I went through the following week with some not so fun shit to deal with. Excuse my language. Let me tell you… and this is going to be TMI, but I can’t really tell the story without giving some details. Over my sewing week-end I noticed some bleeding, post-menopausal bleeding. I’m thinking, “No big deal…” When I ask my friends what they think… they are like, “You better call the doctor!” We all know how much fun going to the doctor is. Why not just make the appointment, walk out the house, stand outside for 15 minutes, come back in and say to yourself… “There’s nothing wrong with you, it’s just a side effect of the Fibromyalgia.” That’s pretty much how I feel everytime someone recommends I go to the doctor. Anyway! I made the appointment and went in and let me just say… I was perfectly calm… I will even say I was just going through the routine when the doctor says to me… “Well, I think we need to take a biopsy, we can do it now or you can make an appointment to come back. I generally tell my patients to take an Ibuprofen before doing a biopsy to help with the pain.” Ummmmmmmmmmmmmmm… queue laughing track. I literally asked her if the difference between me getting the biopsy now or later was taking some Ibuprofen and she said yes. Well considering Ibuprofen is like eating candy for me (a nasty tasting candy that you aren’t supposed to chew), I went through with the procedure. DAMN! DAMN! DAMN! That hurt. She was good, she talked me through it… but I was definitely not prepared for that kind of pain. While I’m sitting there eating my graham crackers and drinking the juice they gave me to bring my blood sugar back to normal, I tell the doctor that I am scheduled to travel and be out of town for a few days. She gets all hesitant and to make a long story short, she tells me she needs to be able to get a hold of me in case we need to make plans. I’m like, plans for what? I mean I am starting to freak out now. She’s hesitating with me and telling me that in case it’s cancer, she will need to get a hold of me. I’m sorry… “WHAT?” I came in here to hear you tell me that it’s no big deal, it’s just a side effect of Fibromyalgia and you are telling me it might be cancer? Not what I bargained for. So, needless to say I spent a few days mostly convinced nothing was wrong with me, but still slightly concerned I had cancer. Results came back benign but here’s where you actually want to walk away hearing that it’s just the Fibro. It really made me think. It’s the one and ONLY time I have ever actually wished a doctor would tell me my problem is not a problem that can be treated because it’s the Fibro or I would have even taken that look of “Why are you here, there’s nothing really wrong with you” that some doctors give when they don’t really believe Fibromyalgia is a real thing. Makes ya think, huh? Another lesson learned. I could have done without this lesson, thank you very much!

When did my kids grow up? I mean where was I when they became these young adults walking around the house? I am looking at my life and thinking I really am kinda pp,550x550hitting my mid-life (hahahaha! Hitting? How about hit awhile ago!). When is that mid-life crisis going to come? I’d like a tiny bit of warning because I’m already dealing with so much crazy… to add to it?? Please give me some warning!! I’ve always wanted a convertible… so that’s not really an indication. And honestly, I don’t want any specific anything so much that it screams, “I AM YOUNG AGAIN!”. What I really want most these days is to go to the beach for a couple weeks somewhere tropical and do nothing but read, lay in the shade, watch the sunrise and set… eat good food AND most important I’d really love while I’m on the flight over to this magical place to go through some kind of Bermuda (but not “the” Bermuda) Triangle that results in everyone becoming… let’s just say looking and feeling like their perfect weight/ size. Can I get that for my mid-life crisis? Where can I book this trip? I’ll take the pain (well I’ll take the pain as long as it doesn’t get any worse than it is now… always a caveat)… but like I was saying… I’ll take the pain for the beauty of a tropical beach, some great chick lit books, yummy food and of course the company of my husband! The having a great body part would just be over the top, but damn wouldn’t that be wonderful! I’d love to talk more about the weight thing… but that would just drag me down and it’s not worth getting depressed over – just these few words has affected my happy feeling… soooooooo STOP! Let’s go back to thinking about the beach.DSC_0092

I guess I will settle for a drive over to Santa Cruz for a day to watch the sunset (which by the way is pretty damn amazing!) every now and then. I just need it every few weeks so I can get to that zen feeling. You know that awareness when you look at the ocean that your life’s worries and challenges are so small against the vastness of the universe. That this world God created is awesome and how blessed we all are to live and how important it is to take advantage of our natural surroundings. I need the reminder to get out of my own head. It’s so easy to get caught up in work or just life in general that you forget to actually enjoy life.

So my moral for today is to enjoy your life. Find a way to balance the pain so you can have fun, laugh, love, feel the joy of living. If you don’t remember what that’s like, go outside and find some solitude at the beach, at a park, at a pond… in your backyard. Wherever you can go that will allow you to breathe in the fresh air, meditate for a bit, appreciate your surroundings and realize you are alive and you deserve to live a good life!!

Or… you can always sit down and write your own stream of consciousness… I promise you, you’ll feel better for it. Even if it doesn’t make sense to anyone else, it will make sense to you… and that’s really all that matters.

Thanks for stopping by and taking the time to read today. I wish you a relaxed morning, day, evening wherever you are.

Gentle Hugz.

Tamiko

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

Day 13: 10 Things I Can’t Live Without

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!

I like this prompt, it makes me realize how blessed I really am. I have all of this in my life today and as long as I have God in my life, anything is possible. What a great way to start the day! Imagine a life without Tivo or my laptop or the internet … it actually seems kinda nice.

God

My family

My friends

Laughter

Freedom

Books

Music

The beach

Blue Skies

70 degree weather

Day 6: Myfoggybrain Haiku

I’m on day 6 of this Health Activists Writer’s Month Challenge. So far, so good. I am loving that folks are reading and it’s been nice to have something to look forward to at the end of the day. This was a fun exercise for me. I don’t think I’ve written a Haiku since I was in elementary school. I had to relax my brain enough to allow a bit of creativity. I hope you can relate!

Frustrated again

Depressed, exhausted, in pain

New day tomorrow

Family – Friends – Love

Beautiful life without pain

Faith – Strength – Patience – Joy

GUEST BLOG: Dear Wife and Fibromites… a letter from my husband

Hi everyone… my husband asked me if he could guest blog tonight. It came as quite a surprise as he’s been in the bed for the last few days. I would have thought the last thing he would want to do is be a guest on my blog. I share this with all of you and hope you have as wonderful a husband as I do! Please share this with your family and post your comments, we’d love to hear from you. – Tamiko

Dear Wife and Fibromites,

Thank you for letting me guest blog! So here I am, sitting in this empty bedroom, on my third day of pain. I have a pinched nerve that’s radiating down my neck to my back down my arm. I went to urgent care Wednesday morning in the most excruciating pain I have ever been in, (in my life). Once I got home, I barely made it up the stairs, then to top it off, I sat on the side of the bed in the most debilitating pain while I waited 2-2.5 hours for the Naproxen and Hydrocodone to kick in. Longest 2.5 hours ever! Now understand, I have a high tolerance for pain (so I thought) you see I’ve broken bones, torn cartilage, I even once played soccer for 2 weeks with an unknown broken foot!

So with that said, I thought I had a high tolerance. This pain was unfamiliar to my body, but very familiar to my brain. Hmm, where have I seen this familiarity? That’s right my wife! There have been many times when my wife could not make it up the stairs, could not move a muscle in her body without a grimace, and many times NOTHING would help. Holy shit, I am getting a “taste” of what she goes through as well as anyone else with that shitty ailment Fibromyalgia. Upset stomach because of the meds I HAVE to take in order for the pain to subside, have not eaten in 3 days, super sensitive to smell, constipation and nausea (TMI), but a big part of how I’m feeling. I have been waking up at night every 2 hours, awake for 1 hour, then sleep again for 2 hours. Just sickening! And the kicker is, I see zero light at the end of the tunnel. I am a walking zombie in pain right about now.

So back to my wonderful wife… all I can say is if you have a wife, spouse, partner, friend or family member with any type of chronic pain, I just realized you might never ever understand how or what they feel. And yes, this could be a boneheaded statement, because if your loved one tells you how they feel, you theoretically should understand. But you won’t, take it from me it’s been many years for me being on the non-pain side. But this little touch of pain I am experiencing right about now is letting me know what it really feels like (only if it’s just a few days) I actually feel like the idiot, selfish, self-centered husband, who supports my his wife, but was not really “getting it”. I have been in pain for 3 straight days (laughable to her 10 years) But I do understand just that much more. I always tell her how “I wish I could just take some of her pain away and have it go into me” I am re-thinking that right about now. This pain shit is no joke! My sensitivity level has just risen, my advocacy level has just risen, and my awareness level has just risen. I will listen more and I will help more, I will cook better foods for her, I will read more and I will educate myself more.

In summary, first off I can’t blog anywhere near how my wife can blog, but I thought I would just guest blog and share my great and terrible experience. Basically you think you know, but you don’t know. It is humbling and revealing all at the same time. If you are like me and have a wife in this life battle, hopefully you can just take a little from this blog even if it’s just to open your eyes that much more. So what needs to happen at this point is us non-fibromites need to stick together as well. We are the support system!

Thanks for listening.

Ray Arbuckle (husband and advocate of Tamiko Arbuckle)