Start a Conversation Today!!

Can you believe it’s almost May? Time just continues to zoom by … there are moments when I want to implement some kind of slo-mo magic in my life and then there are the moments where I would love to hit the fast forward. The last few weeks have been terribly painful. When I start to feel like this vice of pain is getting released, another flippin’ flare hits me. Yesterday was particularly fun… every time I took a breath this intense pain just pulsated through the right side of my back. I woke up this morning and it was all gone. Don’t get me wrong, I was very happy that that shit was gone, but seriously… it confuses me when the intensity is so high. I actually start to think something else might be wrong… and then I am reminded when I wake up that it’s just Fibromyalgia.

Almost a month ago I had this really wonderful experience. I was requested to participate in a film focused on invisible and chronic illnesses. The audience for this film is all of us living with the illnesses, but it is also for those people who love and support us everyday. The creators of this documentary, Ron and Tasra, have done a beautiful job portraying our journey in a creative and honest way. The work they are doing is so important. It validates that we are not alone. When I viewed the short video that Ron and Tasra shared to give me an idea of what they are creating, I was at a low point in the day. I was laying down in the midst of yet another flare when I read their email… I clicked on the video expecting to watch a bit and turn it off (I have about a 30 second attention span), but I not only watched the entire five minutes (I know… it sounds crazy even when I write it… as if it was five hours, not five minutes)… anyway, I was hooked. I responded right then. Which, let’s be honest… that’s also not my usual M.O. I am horrible at reading emails and even worse at responding (This is me apologizing right now to those of you I have yet to respond to). A memory was in the making. Ron happened to be coming to my city (coincidence? I like to think of it as a blessing from above) and both my children and my husband were available on the date we agreed (triple blessings!). Unbelievable.

I had no idea what to expect. I was nervous and excited at the same time. Ron arrived, set up and we started talking… and talking… and as we talked I was amazed at what I was hearing from my family. This experience brought us closer and helped us to better understand the impact my illnesses have had on each one of us. At my very worst, my son was in his early teens. I realized how hard that was for him. I missed a lot of important events because I just couldn’t walk. I remembered when he was talking that I lived in my bedroom… in the dark. I was so out of it I could barely function as a person, much less a mom.

I know when I’m in a really bad flare or fallen into the black hole of depression I am hard to live with. My frustration and exhaustion get the better of me and there are times when I just feel like giving up. Those are the times when I just retreat into my bedroom, close the blinds and shut the world out. The times when I miss important events, when I let my family down. Meeting expectations can be hard when I’m feeling slight pain… when I’m at my worst, it’s almost impossible. I realized that during the worst months and years, I had (and continue to have) a very unrealistic expectation that my family knew how bad things were for me. At the same time, I acknowledge that my family had a valid expectation that I would be present for them no matter what. While the kids and my husband answered Ron’s questions, there were moments in the conversation that made me pretty emotional. I felt a loss… I was reminded of how much I wasn’t present (both mentally and physically) over the years… but as hard as it was to hear some of the responses… the emotion I felt the strongest? BLESSED. Blessed that we could all sit down together and be honest. I realized how forgiving they are and how, when my journey was decided, God gave me the best gift in the world… my family. I was reminded how far I have come since the days when I could barely move around and the doctors just thought I was crazy. I believe had we not all had prior commitments that afternoon, we could have talked for hours. It sparked an important conversation for us. So, for me, I am very thankful to Ron and Tasra for initiating the conversation.

 

InvisibleIllnessFilm.com

https://invisibleillnessfilm.com/

I tried to make this image a link to their site… but that didn’t really work out… so don’t try clicking on it… it will only lead to frustration.

Watch the video and if you take away nothing else, sit down with your family and have a conversation. What do they remember about you before the shit hit the fan? How has it affected them? What can you all do to improve your communication? your lives? I admit, I completely blanked on the technical, “What is Fibromyalgia” question Ron asked… like really blanked… but for me it doesn’t even matter. This documentary is not about learning what the illnesses are the individuals have.. it’s about hearing how people are living life regardless of the illnesses… it’s about validation.

Thank you for taking the time to visit my blog today. Have a blessed and pain free day!

Gentle hugz.

Tamiko

Be Blessed… Accepting Your Limitations

Soooooooo…. another doctor’s appointment come and gone and once again I left the office with no answers. Today I went to the audiologist to see if there was any reason why I have this constant high pitch tone flowing through my head 24×7. OF COURSE I waited many, many months before going in… and OF COURSE I left with the same answers I have 90% of the time I go into the doctor’s office… and that is OF COURSE — NO ANSWERS!! Oh wait, I did get one answer… a referral back to my PCP. Woohoo!! Well, let me find the positive in this. I do not have any loss of hearing. And trust me, no sarcasm… I do appreciate that something is working the way it is supposed to! There’s a positive for every negative, right?

What a time in our lives… our daughter is graduating from high school in about six weeks. Damn. SIX WEEKS!! (I have no idea why I am using so many caps, I’m really not trying to yell at you.) I forget how much is involved with these graduations. We are in the process of selecting a college. When I say “we”, I actually mean “she” with a little help from us. She just had her senior prom… she’s planning a senior trip… we are planning her graduation party… senior pictures… college commitment/ housing/ budgeting… CALGONNNNNNNNNNNNNNN take me AWAYYYYYY!!!!!! (only those of you that are on the older side will remember that commercial… here’s a link for your viewing pleasure.)

IMG_4270It’s times like this when I tend to forget I am not physically able to do it all. For every one busy day, I tend to have two days where I’m down. Lately it’s been a lot more down days, than able days. We drove up to Eugene, OR to check out the University of Oregon. An amazing campus. The drive up was very nice, but sitting in the car is not easy for long periods of time. We knew it was going to be tough so we made several stops along the way… we took our time. Accepting my limitations in this instance made all the difference. When we arrived in Eugene, I was doing okay. Whew! The next day, however, was a bit trickier. We had scheduled a tour of the campus for 10:00am. We arrived early so we wouldn’t be stressed out, again planning in advance… what we couldn’t plan for was how fast the walking tour was. This tour guide was very enthusiastic. To make things even more challenging it was very cold outside. So just picture a very brisk walk for 90 minutes in and out of buildings, up and down stairs and in the cold… This is where I tend to not speak up. I don’t want to be a burden or slow a group down so I stayed the course and I made it through. I was really proud that I made it. The rest of that day IMG_9659and the next morning… MAN DOWNNNN!!!! What can I say? I did my best and we actually accomplished everything we wanted to. We just did it in our own time and tried not to stress. We made it home and I was able to rest up for a couple days before going back to work today.

I know there’s a lot coming in the next couple months. I just have to keep reminding myself that it’s okay to ask for help and it’s okay if everything is not 100% perfect. It will be the best we have to offer and as far as everyone is concerned it will still be great! The thing is… it’s not about me. It’s so easy sometimes to just get all engrossed in how crappy I feel, I have to remind myself that it really is NOT about me 99% of the time. It helps to remember that although I am in pain and struggling with depression/anxiety… it could always be worse. Like I could be losing my hearing!

It really has been a rough year. I have struggled with my depression/anxiety a lot this year. For one reason or another, my flares are closer and closer together and they seem to last longer. I know I can do better with taking care of myself, but as you all know, it’s damn frustrating living like this. To have a week without any kind of pain would be amazing. To be able to take time off work for vacation and not be sick… what a concept!

Listen, I realize each day is a challenge living with Fibromyalgia and Depression and Anxiety and Essential Tremor and GERD and ADD and… oh wait, sorry, lost my train of thought. Anyway! I realize every day is a challenge living with all the crap we live with, but we just have to remind ourselves to accept our limitations and remind ourselves of the blessings we have each day.

Which leads me to … I am still journaling every day! I haven’t missed a day without snapping a picture or journaling. There have been a few days where I have just put a picture because I was too sick to do any more than that… but I have kept up the practice of journaling every day! Find something that helps you think about the positive in your life. As I look back through the pictures I have snapped since the first of the year, I can’t help but smile.

Thank you so much for stopping by and please have a blessed day!

Gently hugz…

Tamiko

 

Welcome 2016!! Hello Happiness!!

 

Stress takes a toll… relationships… health… sleep… diet… PAIN!! Stress takes a toll.

What do you do when you are stressed? Me? Some days I manage well… other days? Not so much…

2015 was full… I mean FULL of stress and challenging times on a personal level (honestly… what would it be if not personal)? I can take classes, read  books, gather tips and best practices for managing stress… but the problem is, as many of you well know… you actually have to PRACTICE those things that one learns. WTH? No magic pill? No snap of my fingers? No twitch of my nose? Damn! I actually have to work to make it WORK.

Every year I write down my goals… each year, kinda the same thing. I want this year to be different. I want this year to be better. I will do better. I will set and achieve my goals. No more, “I will lose 50 pounds in one month.” … maybe something like, “I will exercise once a week.“… (damn, even that sounds hard to me… Crazy!! Full confession… I don’t exercise at all right now, so exercising once a week is going to be very challenging). Maybe I will set goals to achieve each month. For examplgoalschangesm.jpge, in January I could… eat less sugar! Hmmmm I need specific achievable goals… so in January I will reduce my sugar intake by not eating sugar 1 day in week 1, 2 days in week 2, 3 days in week 3… that will be damn hard, but changing fro
m bad to good habits isn’t meant to be easy. Accountability! (I really need to figure out a better word to use as my mantra.) Most important…  I will do my best to be happy about small successes.

That’s a challenge in itself. Being happy. For those of you with depression, you know exactly what I mean. Happiness does not come naturally for me, it requires me to take meds and accept things and not be sad or down about shit, not get upset – I am super envious of people who are able to “take things in stride”. What the hell is that anyway? How does one do that? What’s the key to happiness? I’m quite sure it all goes back to exercise, eating right and acceptance. It’s everything. These three things solve stress, pain, depression, anxiety, self-confidence, self-esteem… the list is infinite! These three things. Exercise. Diet. Acceptance. Three words. How can there be so much behind three words?

Wouldn’t it be awesome if I had one of those believe it and you will do it minds? Well… I don’t. I have one of those… “Jussssssttttt one more See’s candy… I deserve it!” minds. “CALLING ALL SELF CONTROL TO THE FRONT OF MY MIND!! … PLEASE … COME TO THE FRONT OF MY MIND!!” Wait.. what? It’s gone in hiding? Can’t find it? Damn thing is never around when I need it. I really have to work on that. Self Control has to replace “I deserve it!” as my BFF… that’s going to be a hard one. My current “I deserve it!” BFF has a box of See’s candy in one hand with a Nordstrom bag on her shoulder and the remote control to the TV in the back pocket and of course, an “I will start tomorrow on… (you fill in the blank)” attitude! Replacing her is going to be tough… I mean I have to kick her to the curb HARD to make this work.

Well welcome Self Control to 2016 and g’bye “I deserve it!“!

I hope you are saying hello to all good things this year and g’bye to the bad.

A big gentle hug and I wish you all the happiness, good fortune and pain-free/ improved health in 2016!!

I leave you with one of my favorite pictures of 2015… Three generations! Happy new year!!

DSC_0139.JPG

Tamiko

How Honest Are You?

… vent, vent vent… complain, complain, complain… this is how i feel. I feel like everyday I say the same damn thing. It goes something like this…

girl-150102_640“I am not feeling well”

I am exhausted

I am in a lot of pain

That food was so good!” … and an hour later… “That food made me really sick

I don’t have the energy for that

My legs aren’t working” … “My hands are killing me” … “I have a migraine” … ” …

I can go on and on and literally ON! I know a lot of you folks out there feel like every time you describe to your family or those closest to you how you are feeling … it’s like a broken record. Should we lie? If I don’t tell the truth people assume that I’m feeling perfectly fine and then expectations change. The truth of the matter is, just as quickly as I forget what pain feels like, others forget what me in pain looks like. And honestly… be super-duper honest… is there ever a moment in the day when you don’t feel any pain? For me, the answer is an adamant “NO!” (I’m really not shouting at you… just making a point). So if I go with my baseline pain level and call that “fine” and then just speak to my worse than baseline symptoms, is that better? And better for who? Me? My family?

What prompted all this? Well… I’m not sure. I think it’s because I have been in a flare for months now. I’m not sure how long because at the beginning of this calendar year I, for no rhyme or reason, stopped using my calendar. I had a calendar last year that I wrote all my health stuff in… this year I just haven’t had the energy. I’m not even sure it’s a lack of energy thing as much as it is I got tired of thinking about everything. I’ll be honest… I’m kind of a mess right now. But, as I was saying, I feel like I’ve been flaring for months. I don’t recall being in a flare for this long in years. It’s just not calming down.

So, is it a burden for my family and friends to carry if I am honest about how I am feeling or is it a burden for me to keep the truth to myself? What’s the balance and where do you draw the line? I’ll tell you what. I’m tired. I’m tired of feeling like shit. I’m tired of being depressed. I’m tired of never being able to say… “I feel GREAT!”. I’m just flippin’ tired.

And now that I have vented and complained what the hell am I going to do about it? Ummmmmmmmmmmmmmm, can this be one of those days where I just vent and complain? Do we get those days? I think if you talked to my husband he’d tell you I definitely have those days… but that’s not what I want to do with you folks out there who have chosen to follow my blog. We all have these shitty days, but to just vent and complain brings everyone down including ourselves. How do you get out of the pit of pain and depression? I believe you have to be kind to yourself. Acknowledge that you will have bad days and today is one of them. Tomorrow is a new day. It’s a new opportunity to have a less painful day. A less down day… one that could be a happy day. It sounds strange, but in our world of chronic pain – pain and happy go together. You cannot let the pain take your happiness away. If you don’t allow yourself to be happy while in pain… the alternative is not a life worth living.

IMG_0379Yesterday was a pain and happy day. I was having some issues walking, but I was determined… I couldn’t let that ruin our family day. We started the morning out playing soccer with my exercise ball in our bedroom (don’t tell the kids) – I don’t think I’ve laughed that hard in a long time (let’s just say we were almost in the market for a new tv)… followed by an awesome breakfast the kids made for Father’s Day and then we all piled in the car and spent the day together. A day which included walking… which was extremely painful. In this instance I was not about to let the pain get in the way of everyone’s happiness and just as important mine. We had a beautiful day which I managed with pain meds, laughter, joy and a lot of positive self-talk. A pain and happy day.

So back to my question… how honest should we be? Maybe I will try another approach. Maybe I’ll use the baseline approach and if I’m feeling my normal pain, I’ll say, “I’m doing good!”… I might even try to start saying, “I’m doing great!”. If I’m feeling worse than normal, I can just say “It’s not a great day”.

Our lives are not predictable. The only thing we know for sure is that there is going to be pain, we are going to be uncomfortable. We are going to have days where we want to scream and shout, stomp our feet (although that would cause more pain), and cry… but after you realize your life could be a lot worse and that you are surrounded by the best family and friends anyone could ask for… you realize how blessed you are. Today may be hard… but there’s always tomorrow.

Thanks for stopping by! I love hearing from you either by email or comments.

Stay cool and relax… Gentle hugz!

Tamiko

Fight! Live YOUR Life!

How many posts do you start and stop before you get to the one that you feel is okay to publish? Having a blog is like writing in your diary… except I left my diary open on a table… in a restaurant… and people are walking by, picking it up and reading it. It’s scary and strange and cool all at the same time. It’s very cool to know that my feelings and experiences are interesting or helpful to others. It’s also difficult. Difficult because I always want to be real, true, honest… and it’s not always easy to be those things.

Like today, for instance… I started and stopped a separate post because, in all honesty, it was bringing me down just to write it. Lord only knows how someone would feel reading it! I don’t feel it’s fair to share stuff that is just depressing. I have depression… I don’t want to make it worse for anyone else. Then I wonder if I am doing a disservice to myself to set that post aside if that’s how I really feel. So here I am. I decided to take a different perspective on how I feel to see if that works better.

I have had a pretty up and down time for a while. Physically I still flare, I know this is not going to every go away completely. Life with Fibromyalgia. This Essential Tremor shit is uncool. I mean seriously, what the f*ck? Anxious? Nervous? Worried? Angry? Frustrated? Stressed? Basically ANYTHING that is not calm or relaxed and my head just nods and my hands shake… I have to use my muscles to make it stop. I don’t want to make anyone uncomfortable or even myself, for that matter. Sometimes I don’t notice it, but that’s pretty rare. I would just prefer noone else notice it… My anxiety? Well, through the roof these days. I keep telling myself… “Give it to God“, but my anxiety keeps telling me “ummmmm, NO!”. (I’d say “Hell NO!”, it just seems wrong in the same sentence as “Give it to God”. Oh wait, I said it anyway.) That battle between me and my anxiety goes on for at least an hour or two throughout every single day. ADD? Yes it’s there, but on average I seem to be managing this okay… and let’s not forget the ever-present black hole… the opening to enter is not big enough for me to fit in at the moment, so I won’t give it much real estate other than to say, fighting Depression is also a daily battle.

Oh! Did I tell you I started the big M? Menopause. No period? No complaints from me! I have discovered a miracle cream though. It seems to help with my mood, maybe a little with the migraines, feels like it’s helping my energy. It doesn’t seem to be a coincidence that I started walking around the same time this cream and I became besties. I don’t like promoting products, but this one has really been one of the few things that I know really helps me. [Pro-Gest Natural Progesterone Cream Paraben Free 2 Oz From Emerita] I don’t want to debate the pros and cons of this specific product, just that if you are experiencing any of the symptoms of menopause, you may want to consider trying a progesterone cream.

I am not sure why I have been afflicted with all these illnesses. I still hope to wake up one day and not have any of this. Hope… Dream… Believe… it does keep me going. We all need to hope, dream, believe about something!

Here’s the main thing. We all wake up (well we certainly hope we will wake up), and some of us struggle to get out of bed, some of us struggle to walk, some of us struggle with the fog that encases our brain… unfortunately some of us struggle with all three of those things and more… but we all start the day with the option to have hope that today will be a good day, to dream that tomorrow will be better, to BELIEVE that we can manage our pain so we can live our lives. If we choose to start the day any other way, we make it so much harder for ourselves. We have to be our own cheerleaders in life. It’s so much better to live rather than just get through another day. It is not easy, but it’s soooo worth it!

Fight those demons, the anxiety monster, the black hole of depression, the little voice whispering in your ear that your pain is too much and you can’t do anything… you can always do something. Be proud of the fact you are able to get out of bed today, that you are able to get dressed … small successes are so much better than feeling like a failure. Kick the ass of this negative shit in your life and empower yourself to be strong.

Noone can take away how special you are or how damn strong you are to deal with this shit every day. Don’t let anyone take away your power.

I admit, I got a little riled up there for a minute, but sometimes we all need a little kick in the ass to remind us that we are special… God chose us to share with those who are suffering that people with pain can and do live a good life. Now go have a great day and live your life!

Thanks for stopping by!

Stay cool.

Tamiko

Day 21: Health Madlib Poem… Captain Barbossa and My Gut

I have had one hell of a week. I have been to the doctor just about every day, yesterday twice. I have had my blood drawn three times and I’m waiting for all these results to help figure out what the heck is going on. I have found out I have iron deficient anemia. Now it’s on for the search for where the blood has gone… is going and where it’s coming from. I gotta say, I am happy that there is a valid, medically tested and confirmed reason for why I am so damn tired and having such a hard time focusing. I never go to the dr. for these things as they have become a way of life for me… this was just a very good reminder to check in every once in awhile. Coincidentally, Adrienne Dellwo, writer for about.com’s Fibro/CFS page posted up this article about anemia and FMS the day I found out. If you haven’t stopped by her site, you are definitely missing a crucial tool in your resource box.

Anemia & Fibromyalgia: How’s Your Iron Level?

It’s funny, the doctors and nurses are amazed at how I am still working and generally still somewhat functioning despite the level of pain and this new found anemia. It’s been kinda nice to hear, considering I have been feeling so lazy and dumb for the past couple months. I don’t mean that in a critical way, it’s just the easiest way to say how I’ve been feeling… and it’s true. In actuality, I haven’t really been completely depressed about this (wierd, right?), sadly I think I just accepted the reality of FMS. Maybe some of the realities of this illness should not be accepted so easily.

Figuring out when to call the doctor and when to carry on is so difficult. We are all so used to leaving the doctor’s office feeling like “that was a complete waste of time” (and I usually have a word that begins with F in that sentence even though I am trying not to use words that start with F…). I think we all start to give up on ever feeling good again. I had definitely given up on even thinking I would feel good about eating again. I always feel, for lack of a better term… yucky. I really want to eat something (because I LOVE food!) and then when I do… I feel like crap after. I was telling my husband, it’s like when Barbossa is telling Ms. Turner in his quarters what it feels like to never really live or die and he explains… “The more we gave ’em away, the more we came to realize the drink would not satisfy, food turned to ash in our mouths, and all the pleasurable company in the world could not slake our lust. We are cursed men, Miss Turner. Compelled by greed, we were, but now we are consumed by it…“, he goes on to say “For too long I’ve been parched of thirst and unable to quench it. Too long I’ve been starving to death and haven’t died. I feel nothing…“. I sometimes wonder if i was on that quest and I took some of those gold coins. Someone please tell me where I put those (as you must know I forgot). I’d like to put them back.

For fun, here are a couple sites to see Barbossa’s quote:

Well, I should get on to what the prompt was for today since 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!)

Today’s Prompt: Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.

Well….. I did this. I followed the prompt, went to the website and I gotta say… not impressed. This isn’t the best use of my blog, but I’ve already used my two “get out of post” cards.

This is the poem as it was turned out by the madlib…. like I said… not impressed. I look forward to the next prompt.

mysterious dog’s mysterious dog

ccarefully i have never imagine, loudly beyond
any bed, your fibromyalgia have their funny:
in your most adventurous palm tree are things which endure me,
or which i cannot listen because they are too quietly

your clumsy look somewhere will unovercome me
though i have photograph myself as rainbow,
you pretend always doctor by doctor myself as park sleep
(understanding accidentally, absentmindedly) her beautiful flower

or if your toy be to whisper me, i and
my hammock will escape very painfully, courageously,
as when the banana of this bed gather
the beach irritably everywhere promiseing;

nothing which we are to reach in this kitchen talk
the car of your quirky mom: whose dad
walk me with the sister of its brother,
runing illness and depression with each danceing

(i do not dream what it is about you that wish
and write; only something in me believe
the grandma of your fibromyalgia is strong than all park)
grandpa, not even the caterpillar, has such amazing monkey

– sing & e.e. cummings

Day 16: Pinboard…

The prompt today is to create a pinboard for my health. I created one just before I joined this writing challenge. I have been posting most of my prompts from this challenge there.

My three favorite prompts so far in the challenge are:

Day 5: Ekphrasis Post… WHAT? Ekphrawhatis? #HAWMC #Fibroymyalgia #Depression

Day 7: TUI… Talking Under the Influence of Pain #fibromyalgia #depression #HAWMC

Day 11: THANK YOU! Remembering my very first post: The F word… Fibromyalgia #HAWMC

Short and sweet today… it’s been a rough one for me. Rough or not, I can’t forget to wish my dad the very best birthday in the world!! Without him, I would never have this ability to communicate.

Take care everyone!

Tamiko