Day 5: Ekphrasis Post… WHAT? Ekphrawhatis?

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!

 

Ekphrasis… what the heck does that mean? That was my first question when I saw this prompt for today. So, of course I looked it up and here’s the definition, “a literary description of or commentary on a visual work of art“. So! Now that we are all on the same page… here’s my post for today… enjoy!

The instructions for this posting was to go to flickr.com/explore and write a post inspired by the image. I searched and searched and searched for a photo that inspired me. I was getting frustrated over the whole thing when I realized I am way more inspired by pictures I already have… sometimes you just gotta rebel and do your own thing.

This picture is of my parents on one of our family vacations when I was growing up. It is one of my absolute favorites! Our vacations were spent in a cabin… no tv, no electronics. We played cards and read and just hung out together. Together. What a wonderful concept!

Look at my mom’s feet. They don’t touch the ground!!!! I laugh every single time I look at this photo.

They have been married over 50 years and that alone, is inspiring. Marriage is hard, or I should say… marriage is hard — WORK! That stuff in the movies is so romantic and funny and yes, sometimes, heart wrenching…  marriage is some of that, but let’s be real here… it’s not a romantic comedy most days. Most days marriage requires work. Respect. Love. Trust. and for those of us with chronic pain, with depression, with any chronic health issue – marriage is not easy. The one with the health issues is struggling to get through each day while really trying not to be selfish/ self absorbed… the spouse is trying to support while not complain – in the end both are trying not to build up resentment. The healthy one for having to do everything, including being the relationship cheerleader and the unhealthy one for not having as much freedom as one would like. I am quite sure many marriages do not survive. I am blessed… I have my parents to look to for advice and inspiration and I have a beautiful, loving and supportive husband.

This picture also inspires me with the desire to spend time with my husband and family doing things that don’t require spending a lot of money or even go too far. It makes me want to grab up my fam and go outside and take a hike or picnic.

Most of all… this picture makes me smile and remember some really fun family times growing up. I hope my children have memories like this when they have their families.

I want to be healthy and be able to go on family vacations and take long walks and swim and dance and run on the beach… managing my pain and mental health will, one day, get me there.

Thanks for reading! Stay cool and pain-free.

Tamiko

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)

Who is Your Lighthouse? Every Fibromite Needs At Least One…

sometimes life is not what it seems. these days, every day feels that way to me. i am not working right now due to my medical situation, my blogger friends will know without a doubt why… but i feel guilty. i can’t quite work out my emotions. this is not a vacation, this is not time to work, this is time to heal. wow. time to heal. i say it out loud and i still can’t believe it. if i do things that i believe are healing for me, i still don’t feel right. this is crazy. i am a grown adult. i am lost.

i can remember the moment the words came out of my mouth. “my doctor has taken me off work.” from that moment on, there was no turning back. i was both scared shitless and relieved at the same time. so many questions going through my head, i couldn’t turn the volume down.

  • would i be able to heal?
  • would i have a job to come back to?
  • what does this mean?
  • how is this going to effect my friends at work?
  • what will my children think of me?
  • can i make this change?
  • how will my husband handle yet another burden on his already heavy load?

question after question just kept coming up and before i could answer another question would come up… and then all the forever questions… oh shit what will i do if something happens to my husband? i can’t take care of myself, much less my children… why the hell did this happen to me? why now? why did my friend just pass away without giving me the chance to talk to him just one more time to hear his crazy ass laughter? why can’t i pick and choose when i want to be in pain? why can’t it be obvious that i have a medical condition so people will know i am not okay? (i mean… seriously, i much prefer to look anti-social at parties… that is so much better! [btw, i just told my daughter that sarcasm is bad]  i always end up sitting in one place or better yet even… like today, having to take a nap because the pain was so bad… nice!) i know this is why many of my chronic pain friends do not go out, but that is not the solution. i want to go out and be with friends and family…

warning – i digress here….

i am watching my children, nieces, nephews, and their friends grow up and what a generation we have coming up around us! these. children. amaze. me. their determination, assertiveness, independence… they have it all. they have grown up with so much technology and knowledge compared to what we grew up with. they have access to so much more information at their fingertips… and they access it and use it with ease… we have raised some strong-minded youth. they know what they like, what they want and by the time they can vote … they will not hesitate to make their opinions known. it’s an interesting time. for me personally, sometimes i just want to scream, i get so frustrated trying to raise my children. they know what they want, have so much knowledge, i can’t battle them – don’t have the energy to fight them. most the time i just want to hold them so tight and not let go. i know they will leave me soon and i will only see them when they want to visit. my time with them will be  solely on their terms. their time with me so far has been on my terms. the rest of their life will definitely be on their terms…. how did i get to this topic? hmmmmm…. just typing and this is what came off the top of my head.

and now back to my original post…

as you can see, i am having a very difficult time focusing in one area. i am struggling to wade through this quicksand of emotions. i am trying to journal again. i thought that it would help me “find myself” so to speak. so far not a word on paper in my new pretty journal. zip. nada. nothing. the big zero. “How to Find the Inner You”, “How to Redefine Your Life”, “Where are You?”, “The Map to the Real You”, “The True You”, “This is Your Real Life”, “Your Life Begins Now”, “Life After Chronic Pain”, “Redefining the New You”… etc. all titles of books that would really help me now… if they existed (and they probably do, i just don’t want to pay the price for them, i mean,  after the title, what the hell do I want with them?) i have no patience to read a self-help book… i am just really trying to find a way to get myself to stop! write what i’m feeling down! and listen! and really… is this possible? i have journaled all my life, but for some reason, it really is asking a lot of me. you’ll just have to take my word on this one. (by the way, if you are thinking of writing a book and you were planning on using one of those titles above… ummmmm…. go for it. i’ll just take a one time cut. :) i know God has a path for me already written, i just need to stop! and listen! to Him. i never was very good at listening… my husband can definitely vouch for this. (oh man! did i really just put that in writing?)

so… why the lighthouse image for my blog this week? i’ll tell you why. two beautiful women celebrate their birthdays this week. i look to these women to provide safety in the dark for me and they have no idea how much they save me on a continual basis. one beautiful woman because she is and has been my best friend for the past 20+ years and has been there for me through thick and thin and even though i know i don’t call as much as i should… just knowing if i ever need anything i know she is there.  she gave me the very very best gift of all, my beautiful goddaughter. i would never have made it to this point in my life, if not for her love and strength… i would not be who i am without her in my life. she taught me how to be a professional, how to know and appreciate God, how to be a parent, how to be a girly-girl and without her in my life i would not have been so honored and blessed to know and love her Mother (and yes that is with a capital “M”!)… it would take a lifetime to just say how much she has blessed my life.

the second beautiful woman because through the friendship of our children, i have been blessed with the friendship of this woman. she has given of her heart over and over and over again and always ever so quietly. there is no way i would have survived the last six years without her friendship. she has a calming effect on me the moment i know she is around. her thoughtfulness, sense of humor, no bullshit attitude is so awesome! i look forward to strengthening our friendship with each birthday we celebrate.

they are my lighthouse in the storm that can be my life. dependable, steady… always there. i celebrate them. i hope that all of you have a lighthouse in your life. there are definitely a few other folks who are in this category who i will celebrate in a later blog…

thank you for reading! stay cool… please let me know how you are doing, leave a comment and let me know what’s on your mind.

take care and here’s a gentle hug for all my chronic pain readers.

tamiko

PS. Thank you so much to everyone!! I just passed 3000 hits to my blog this past week… that is too amazing… THANK YOU!!!

When the Anger & Frustration Get The Best of You, What Do You Do? Choose Calm…

I am counting down the days… less than two weeks away until my son graduates from high school. While there is a lot to celebrate, I feel like I am seriously being tested. Mentally and physically…

This is one of those “how much can you take?” tests. All I’m saying is…. REALLY???? Right now???? First of all, I am not complaining. Okay. I’m complaining a little bit. So, as you read this, you must want to know what I am going on about. Well, I’ll tell you.

Work…. on top of Life…. on top of … Work … on top of Life… on top of … well you get it.

It is exhausting.

When the anger and the frustration get the best of you, what do you do? It’s interesting, either it’s age or all of the training I have received in the last couple years, I feel like I am a lot more calm now than I have ever been. This is another way for me to keep a flare away. If I lose my temper, I am guaranteed a flare within 24 hours. So, honestly, it’s a choice I make. How about you?

How about your surroundings? Do you notice people around you are getting mad a lot quicker? It seems to me people also get really mad at the small stuff. It’s crazy to me. I just don’t get it. It’s such a waste of energy. I guess, for me, I have so little energy to start with I see no reason to waste it on the small shit. Maybe if people were in pain, they would feel the same way. It’s an interesting way to learn such a profound lesson, but that’s how I learned! He said/she said… why do YOU care what people think of you? What is really important is what YOU think of you. Think about what makes you angry and figure out WHY. Is it worth spending the little energy you have on that anger? Or would you rather do something else with that energy… like LAUGH?

We are surrounded. There’s no doubt about it. Road rage. The daily news. TV shows. Movies. Rude people. Rude people in general. I am amazed at how rude people are these days. Rude people raising rude children…. and so on and so on…

So! Don’t stand for it. Smile. Don’t let the small shit get to you. Don’t get angry, get over it! Treat people with respect… ya hear me? Let’s use our energy for positivity!! Stand up and shout about it!

If you feel like you are about to lose it… close your eyes, breeeeeeeaaaaathe, count to ten.

If you want to scream at your boss, your husband, a rude person, your doctor …. take a deep breath, close your eyes, breeeeeeeaaaaathe, count to ten.

So… I think you get my point. The person who is going to suffer the most at the end of the day is the fibromite in the anger game.

Choose calm. Thanks for checking my blog out. Please leave a comment.

Stay cool – and chillax!!

PS. It’s funny how I always start off with one train of thought… and I always seem to end up somewhere else. Oh well, I did say I had ADHD, right? LOL!

I Am Enlightened… My Son is Graduating! I Can Do This, RIGHT?

Being a parent is so easy… When I was pregnant, I read all the books, I took in all the advice, I did EVERYTHING right… I was soooo prepared!! Man, I am the perfect parent!! Just call me and I will tell you all the answers. I am the leading advisor on all parenting issues.

Yeah, right!!! Ask my kids, they will tell you the real truth. My son is graduating from high school in a couple weeks and last night we had our “what are your plans for the summer conversation”. I am enlightened. I shouldn’t really call it a conversation. It was more of a one-way talk/defensive-response. I mean, I’m under no crazy assumptions here, I know I am not, let’s just say your Claire Huxtable/Mrs. Brady type of momma … but on the other hand I am also not your get-ready-for-primetime-Jerry-Springer-show momma either. I am smoothly on the side of “living-with-fibromyalgia-so-can’t-do-it-all-so-I-do-my-best-and-it’s-not-always-the-most” kind of mom. I am not sewing Halloween costumes or baking cookies or to be frank, doing laundry or making dinner or to really put it out there… cleaning the house or driving the children around. Are you still with me? Or did y’all quickly leave my post in disgust… that’s me, take me or leave me… I work full-time+, generally about 50-60 hours a week as a, let’s see my title this week is “Sales Operations Analyst”. I have two managers … I report to a Sr. Director of Global Operations and the VP of Sales at a hugemongous (yes I made that word up… and I like it!) corporation that is taking over the world one company at a time. I have worked full time since I was about 16. That’s 25+ years working full time, I’m just slightly tired sometimes. Until FMS hit me, I was definitely that type A personality. Now I am a type “a” personality… just give me the little “a”.

So, having said all that (remember… easily distracted)… I am enlightened. This is a difficult time for me. I want to stop the clock and just say “Wait a minute. I just want some you and me time to just chill. I know you are leaving, but I want to just hold on to you a little bit longer…” He, on the other hand, is ready to GO. I remember that time. I could not wait to get out of the house. I wanted to go, get out and not look back. This is a difficult conversation. Any words said between parent and child can be pretty hurtful.

Us. “We want you to get a job. We understand you are making money on your own, but we also want you to get some experience, have some structure, learn how to take direction within a management team, etc.”

Him: “ummmm, whatever. I don’t agree. I’d rather just hang out with my friends.

Us. “We know you are going out with your friends, we just need to say this so it’s been said… please make right choices about getting in the car with people who are driving under the influence”

Him: “I choose smart friends, why would they do that? I don’t appreciate you assuming they would do that.”

Us: “We just want to tell you our expectations for when you go to college, just on our mind…”

Him: “Why? Can’t you just tell me on our way when you drop me off in like three months, this makes no sense… I mean, why do you need to tell me now?”

Us: “You are graduating from school, you have a lot more time to contribute to the house, both inside and out. We would appreciate it if you would help out. These are not chores, these are things that need to be done, that we may ask you to do. You don’t have any chores that you do, so would ask that you help out a lot more until you leave.” (An alternative was given to pay instead of helping out…)

Him: “I’d rather pay than help.”

Anyway, I’m sure this is not drastically different than a lot of kids, but honestly. Selfishly, and I mean this, selfishly… life at work is so hard, why does life with him have to be so hard? He is so defensive and argumentative about everything that he disagrees with. He cannot discuss calmly, he just goes for the jugular. Aw well…

He was honest. He told us he’d rather spend his summers staying at the college than coming home… He said it’d be more fun staying at the beach with friends hangin’ out than coming home and getting nagged. Wow. That was enlightening. This kid has zero chores. I made a mistake somewhere not giving him chores and sticking to my guns on that one. Now any chore he is asked to do is an issue. On the other hand, this is also not so hard to understand. I would have felt the same way at his age. It’s is just hard to hear.

I am enlightened. Since he was a small child, he has been so stubborn. Very hard headed… to the point that we took him to counseling. I think I get it. Now. Just this moment. He is very serious about his stuff. Since he was a small child all the counselors have always said, “take away what’s important, whether that’s material or something like privacy, ie. remove the door from his room”. We have done that all his life. Now he pretty much hates us for taking that action. He KNOWs his stuff will get taken away, yet he will not give a shit. At the end of the day, he is pissed at us for all the shit we have taken away in his life. Still pissed. He remembers everything. So, why did he push it to the extreme? Why did we let things go so far? Life lessons. There is no damn “this is what you should do in this situation” reference book for each individual child.

In our children and godchild’s lifetimes, we have done our best as parents. We have made mistakes. We will continue to make mistakes. That is how life works. I know this, I accept this. It is painful for everyone involved. This is how we all grow.

I do know, my miracle child is smart, he is a genius to me, he is going to go exceedingly far in life. I am so proud of him. I love him. I trust he will make the right choices. That doesn’t mean I won’t worry, that’s just part of our DNA as parents, right?

Now begins the countdown… Lord have mercy. I can do this. He is ready. I will be too. He is a strong boy and when he walks out that door, he will be a b-b-b-….MAN! He’s been prepared. It takes a village and those he has been around the last 17 years have all given him the tools he has needed to become who he is. It’s up to him to take all of that and take the next step.

Y’all pray for me and give me your support… I already miss him!

Stay cool!

should i call this a fibromyalgia “flare down”? whatever it is… i like it!

i have been feeling really good the last six days. six days of relatively average, level 4-5 pain days. thanksgiving day was the first day i felt really good. friday i spent the day scrapbooking and i felt really good. saturday was up and down… sunday was just okay, i had some serious foot problems but thankfully my husband was home to help me through it. monday is usually the day that all hell breaks loose in my body so i was pretty worried…. i waited and waited and let me tell you. i made it! it was a good day. in fact, it was a really good day, all things considered. i had a clear head yesterday and my pain level was about a 5. i have not had a day with a pain level below 7 in many months. did you read that?? i said months! and a clear head? it felt like i went to the store and exchanged myself for someone new! what the hell is going on?

do i call this great thing a “flare down“??

today… well today was a big day for me. for all you fibromites out there, you can relate to this… i took a shower this morning and i still had energy after. i had to slow it down a bit (i got a little too happy and forgot that i actually HAD fibromyalgia for a second and completely overdid it) but i kept going. i got in my car and drove for the first time in many, many months. i drove up to the san francisco airport to pick up my boss and back down to santa clara for a meeting… i was in the office all afternoon and then out for dinner with the staff. this was a big deal for me. i have not been this active and driving since… well i honestly can’t remember! even better, i had a clear head all day… again!  again i say… what the hell is going on?

do i call this great thing a “flare down“??

at about 8:15 tonight while sitting at the dinner table… i started to feel the nudges and the tension and the bruised feeling and i thought to myself… “go away!… i am feeling good! i am feeling good!… noooooooooooooo!!… not fair!!!!!!!!!!” but i can feel the pain coming. so, i quickly decided to call it a night and come home.

now that i’m home, i can feel my elbows and knees tightening up and hurting and i’m getting pissed off. i need to do some self talk. i can feel my fingers starting to hurt as i type, my head is hurting and all i can think is “eff this shit! i am going to feel good when i get up tomorrow! nothing can stop me!”.

so did i have a “flare down”?? did i have six great average level 4-5 pain days for no reason at all?? well when i think about it … all the nights were pretty painful, the meds helped me sleep through it. i wake up and go back to sleep because of the meds… so… i’m going to think like this for right now:

  • i am having some really great days right now.
  • my nights are painful, but my meds are doing the job and helping me get some rest and when i wake up i go back to sleep so, for now, my insomnia is under control. this is great news!!
  • i probably overdid it today which is why i’m experiencing pain right now.
  • tomorrow is going to be a great day.
  • i may not be where i want to be… but thank God i’m not where i used to be!
  • i have the courage to change what i can and i will accept what i cannot… it is what it is…

my formula for getting here to my “great days”:

  • a whole lot of prayer
  • listening to my teachings by joyce meyer and pastor paul
  • my physical therapy and following through with it at home
  • a whole lot of prayer
  • the support from my family and friends
  • the support from the fibro social networking community
  • a whole lot of prayer

if  i can do this… so can you!

what do you think? “flare down”?? fluke??

thanks for reading! stay cool!

fibroFLUmyalgia… from bad to good

i am going out of my mind… it’s bad enough the weather is changing and every inch of my body seems to want to scream out in pain to let me know. it also seemed to be a good time to catch the flu. why not? why not get it all over with at the same time? i mean… let’s stop and pause for just a moment to think about why not:

  1. it’s not as if i haven’t missed enough time from work and
  2. it’s not as if laying in my bed 24 hours a day/ 7 days a week doesn’t thrill me to pieces and
  3. it’s not as if feeling like my head has been filled with cement is better than just the foggy feeling i usually have and
  4. it’s not as if my kids don’t love joining me in my bedroom for “mommy and me” time and
  5. it’s not as if that journey from my bed to the kitchen for my “once a day” trip out of bed doesn’t just make for a great “FIELD TRIP”! and
  6. it’s not as if the walls aren’t closing in on me in my bedroom and
  7. it’s not as if playing these same four facebook games don’t keep my interest, right? RIGHT?? and
  8. it’s not as if having the flu is really that bad… I mean it’s just aches and pains…

shit. it’s just aches and pains…. what the eff? if i thought my aches and pains were bad before… let’s just say TIMES TWO! i was not an 82-year old lady anymore, i was a 164-year old lady this week. a 164-year old lady that couldn’t sleep, had no appetite and was in excruciating pain. TIMES TWO.

this week, i was unable to walk the hall from the kitchen to my bedroom after dinner one night. it was a horrible experience. i was embarrassed. i was in shock really. it was as if i forgot how to walk. i could not lift my knees up to take a step so i just held on to my husband and literally scooted my way down the hallway in my slippers, one inch at a time. i had to stop three times to take a break it was so exhausting. meanwhile the tears are just rolling because i am in pain, i am frustrated, i am pissed off because i am once again put in this position of complete invalid. i feel the words at the tip of my tongue… “I AM PISSED OFF AND I CAN’T TAKE IT ANYMORE!!!!”, instead i just go lay down… take a few minutes to get it together and then call my son in to watch “grey’s anatomy” together and get my “mommy and me” time in. i cherish this time together like i cherish sleep.

this is when i realize… i am blessed. let me say that again. i. am. blessed. i have this beautiful child. my first-born. he is  a miracle child, he was almost lost to me during my pregnancy. he is a fighter, he has been since he was inside my belly. he had to fight to stay alive and he’s kept that attitude ever since. he’s an awesome kid. he’s graduating from high school this year and i must cherish every moment i have with him. so… screw this pain. don’t let this shit take away from my moments with him. i must remember this moment right now, this feeling i have right now. these are the moments to be cherished. you don’t get do-overs in life.

thank you for reading! time is so precious and i appreciate that you take the time to help me as i work through my experiences through my blog. this has helped me tremendously get through the days and nights.

stay cool!