Handicap Placard Police… You Can’t Bring Me Down!

I know many of you suffer silently with your invisible illness… you work hard to feel good… to get through EVERY. SINGLE. DAY… you do it many days without complaining and without showing your pain… and then someone just tramples on that hard work and makes you realize just how invisible your illness really is.

That is exactly what happened to me today.

I have been working very hard to lose weight, mostly because I want to feel better, and it doesn’t hurt that I feel good in my clothes. I haven’t really felt the benefits of physically feeling better (yet). I feel “lighter”. I am down 30 pounds from a year ago and it’s nice to feel the accomplishment of losing weight. BUT! Don’t get it twisted, I still feel like shit a lot of days and I still have to work hard to get through the days. The pain is still there. I still overdo it so I can enjoy life and I still suffer for overdoing it for many days after.

Today was a hard day for me. I wasn’t feeling good so I parked in a handicap space. Yes, I park in the handicap spaces when I’m not feeling good. I can tell you with all honesty that I’d rather not have a handicap placard if it means I don’t have Fibromyalgia. Anyway, as my husband and I are walking into the store this older couple drives up next to us and this is how the conversation went… and trust me when I tell you that this is the cliff notes version (for those of you that don’t remember cliff notes… this is the summary):

People, “Are you both handicapped?!?”

My husband, “My wife is.”

Old rude lady, “Well you don’t look like you are. I have to use a wheelchair and you seem to be walking fine!” … At this point I’m a bit confused and dazed by the way these people are talking to us.

My husband (very politely), “Why don’t you pull over and I will move my car so you can park there and I’ll just come pick up my wife when we are done.”

Old rude lady, “No, it’s okay

My husband asked again if they wanted to park in our space and was very polite about it. Meanwhile these people were so mean and rude … and then they drove off talking about how they would park somewhere else and then the husband yells out the window, “You walk pretty goddamn good for someone who’s handicapped!“.

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I can’t believe how perfect this image is for this post!!

Seriously? Yes, this is a true story. I was pretty stunned and embarrassed. I’m not sure why I was embarrassed… although if I’m honest with myself I know it’s because I look perfectly fine on the outside. I just walked in the grocery store… didn’t really shop and then we left. We were on the way to our niece’s birthday dinner and I was really trying not to let it get to me… but that was basically impossible… and of course a few minutes in the car and I’m in tears. Having an invisible illness forking sucks. I mean it big time forking sucks.

I already felt like absolute shit, but I’ve missed so many special occasions that I didn’t want to miss this one. I probably should have stayed home in the end… I had a hard time. The stress of what happened just made everything so much worse.

I’m glad I went, it’s nice to be around family. If I had come home I know it would have been so much worse for me. I would have started that damn spiral down, down, down. As I sit here at the end of the night, I don’t feel great, but I can tell you… I can’t be stopped.

I hope I never go back to the days when I was walking with a cane… when I was in a wheelchair… when I missed every special occasion that came around… when I would get halfway to the dinner table and be in so much pain, I would have to turn around and have my husband help me back to bed… when I literally stayed in bed for days and days… the days of being in tears… ALL. THE. TIME… fuck that. I’m not going back.

Those handicap placard police driving around in the parking lots, giving people like me shit when they don’t have a clue… well I wish them well and I hope that noone ever treats them the way they treated us tonight. I will say a prayer for them and move on.

People like that… they can’t bring me down. Yes, admittedly, I had a moment… well a pretty long moment that lasted for hours, but I’m over it now.

It’s not easy to share this kind of stuff, but I know that there are people out there who have had the same experience. Once again, unfortunately, you are not alone. I’m with you. Don’t hold on to it, don’t get angry, don’t feel sorry for yourself. Say a prayer for whoever disrespected you and move on. Let them be miserable. You continue on and find your better self.

And now? It’s time for bed. :)

Thank you for hanging out with me and I wish you all the best pain free days ever!

Stay cool.

Tamiko

Your Life is Worth Living… Blog that!

It’s May… and I can’t believe the amount of time that has passed since I last posted something. I feel like I say that every time… You can’t possibly imagine how much this blog has helped me over the years. If you are going through a painful time, just taking the time to express yourself through this type of communication can really make a difference in your state of mind. Even if you don’t publish it (I have a lot of content that I wrote for myself and didn’t post), typing your thoughts out can help you identify your truths. When I write it helps me realize that my life is good. My life is full of blessings and love. My truth is… My life is worth living.

I am sure many of you have said to yourself, “I’m so tired of this shit, I’m ready to go…” and by “go” you know what I mean. The pain turns into little to no sleep which turns into depression which turns into difficulty being a friendly human which turns into stress which turns into more pain! That cycle is so forked up… but in the midst of all that, there are some good times. For me that goodness can wipe out the sad, painful days and make me feel human again (even friendly human!). Even if it’s only for a few days or hours, it’s worth it. My life is worth living… and so is yours.

tom-sodoge-84368-unsplashTrust me… I definitely have my moments. I can spiral down that black hole with no notice. It would be great if there was a warning sign in my head with super bright (okay not super bright, I don’t want a migraine on top of everything else), but with flashing lights telling me to get out of the house, go breathe in some fresh air, focus on my blessings… literally anything to stop me from spiraling down that hellhole… but generally I can be pretty okay one minute and then BOOM! I’m in that space where you feel like you are watching your life from the outside and… it’s not good. It’s as if the Dementors are sucking all the hope and happiness out of me. I need a patronus… I’m thinking a mini flying elephant. Why? Because I love elephants… and why not small with some angel wings? Just for fun I did a search on an elephant patronus and this is what came up on the mugglenet:

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If you are wondering… my elephant’s wings only appear when called upon…

Elephant – Elephants have a formidable presence and are respected throughout the animal kingdom. Elephants are known for their intelligence, complex social structure, methods of communication, and fiercely protecting their young. As a Patronus, the elephant is sure to scare off Dementors through sheer size and unyielding determination to protect you.

I had no idea there was a list of patronuses (patroni? patronus? what is the plural of patronus?) out there, but I’m not surprised. Lord have mercy I have digressed… Anyway, what the hell was I talking about anyway? Ahhhh, the visual of the Dementor… it’s so relevant to me because it’s exactly how I feel when I’m spriraling (which is literally about a week, if you combine all the hours, out of a month). Let me try and get this post back on track… even if there are days when I’m so depressed I can barely move or hold a conversation, the good days make my life worth living! There! That was the point I was trying to make… a bit wordy, but hopefully you get what I’m saying.

The initial direction I was going when I first started writing today is that when I had noone to talk to about my pain and I was so incredibly frustrated with the lack of medical support and information out there… I started my blog. I felt very alone. What I appreciate about using this forum is that I can type everything that’s on my mind (pretty scary), go back and edit and re-write (you should all thank me for that) and when I finally hit Publish, I feel better than when I started. My writing process involves sitting in a quiet space (usually in the dark) and typing whatever is in my head. As I go through the process I probably delete and start over a dozen times. This is the part of the process that makes me realize how good my life really is. It forces me to focus on the positive and be careful to not hang on to too much negativity. I hope that when you read this, you realize you are not alone in your pain, whether it’s mental or physical.

Think about how you are feeling today, write your thoughts down – whether it’s in a blog or in a journal… read, re-read and edit and see if it helps you focus on the positive and get rid of some of that negativity.

Thanks for stopping by and going through this journey with me.

Gentle hugz.

Tamiko

Anyone Else Exhausted?

IMG_9952I can’t believe how quickly the holidays came and went. We put our Christmas tree up the first or second week in December and bright and early December 26th the ornaments were off and the tree was on the street! I’m back to work after a week off between Christmas and New Year’s and… I am exhausted. You know when babies get so exhausted they just start crying for no reason? Or how about when kids are so exhausted they get angry and frustrated for no reason, remember that? That’s me right now… except I’m 50… not a baby or a small child. I have been going and going for so many weeks I can’t do it anymore. I thought for sure this holiday season I would pace myself. I actually got a lot more done in advance than any other year, but I noticed my energy level just keeps going down. My ability to turn things around after a stressful situation just takes more and more time.

Someone say stressful situation? My day started somewhere around 2:30 in the morning when I woke up with a jolt. This was not about pain… the whole house was shaking… can you say EARTHQUAKE??!!! After only a couple hours of sleep, I got up and started working. My work day consisted of several hours trying to resolve system issues mixed with attempting to get my work done. Can you say frustrated? I managed to finish working and planned for a relaxing night… let’s see… I clogged the kitchen sink and my beautiful aging dog left me a nice post-Christmas gift in the bathroom. Did you catch that? She went to the bathroom… IN my bathroom. Usually when she does something like this (which unfortunately is happening too frequently these days… poor baby) she kinda sneaks away and hides. This time she stood there and stared at me as if to say, “who in the world would do that to you? that’s so f’d up!”. It’s almost as if she was feeling my frustration and providing moral support… to clean up her mess.

Why am I sharing all this? I am exhausted. I know things are not good when I start feeling the blackness start to surround me and today I sensed my mental state starting to really spiral downwards…  So I decided to fight. In the midst of the crappiest day in a long time I chose to get up and get on the treadmill. It’s been weeks since I last exercised and today instead of allowing my depression to win, I fought back. I’m not saying that I am no longer depressed, but at the very least I did something for myself that was good. There’s the silver lining in my day. I need to end my day with gratitude.

Speaking of gratitude (it’s one of those days… my mind just bounces from one topic to the next)… We have plans to go on our first family vacation this year! I mean a “get on a plane and fly to Hawaii and stay in a super nice hotel” kind of vacation! I cannot wait!! I have 8 months to get my act together or it’s going to be a … “get on a plane and fly to Hawaii and stay in my super nice hotel room IN PAIN” kind of vacation. Nobody wants that. So! It’s time to get it together. I know that this kind of change is not going to be easy, but I commit to being kind to myself. I am not going to be perfect, I will not always follow a strict diet and I won’t all of a sudden run 5 miles every day… but I can do my best and make better choices. As long as I know I am doing my best without compromising my happiness, that works for me.

Now for a completely different topic (although it eventually ties together)… I went to the beach with my daughter last week. She’s only here for a short period of time before she goes back to college. Mother/daughter time is very special to me. We don’t have these opportunities very often. She is figuring out where she fits in the world and she is fighting for her independence. I remember what that feels like, I couldn’t wait to move out of my folks house… so like a complete idiot, I moved out at 18. I’m not saying it was the dumbest thing I have ever done, but I never realized how much my folks did for me. The biggest gift they ever gave me was letting me go without a fight. I don’t know how they did it. They hardly ever questioned any of my decisions… and I can’t remember a single time they turned their backs on me. They watched me move out and struggle and every single step of the way they lifted me up when I was down. There were so many moments in my life when they carried me on their shoulders for long periods of time… and they did it without me even realizing it. If i could be 10% as good to my children as my parents have been to me… that would be amazing. It’s an overwhelming emotion when you step back and look at your life and realize the people who have been your strongest supporters. Without a doubt my folks have been there for me every step of the way. The fact that they allowed me my independence as a young adult forced me to learn so many things in life. It’s time I take the blessings they gave to me in my life and share those with my children. The challenge is really letting go…

 

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I completely lost focus there! Me? Lose focus? No way! Getting back to my original point (I told you i would tie this all together). I went to the beach with Kiyomi last week and I took this picture of her with our dog Tani. To me this picture signifies how small we are in God’s beautiful universe. I realized that what I call “problems” are so small in comparison to what is going on in other parts of the world or even just down the street. I have a home, the best family and friends in the entire world, I have a good job with a manager who understands my health challenges and supports my work/life balance and I have a relationship with my son and daughter that far exceed any expectations I ever imagined. What the hell could I possibly complain about?

So! I started out telling you how exhausted I am. Trust me, I am still exhausted. It just  doesn’t matter how exhausted I am… how much physical pain I am in or how depressed I am, it’s up to me to do something about it. I choose to live my life. I’d rather hang out with friends in absolute pain then sit at home alone in pain.

I will have my bad days, but let’s hope 2018 brings an abundance of good days. That is my wish for all of you. I wish for you all to have more good days than bad and I wish for you to live your life to the fullest. Laugh! Feel the joy of friendship and experience the fresh air and sounds of whatever you love in nature. I, personally, can never get enough of the ocean.

Thank you for stopping by!

Gentle Hugz.

Tamiko

My Best Friend Self Sabotage

I really try hard not to curse… especially when I blog. But for goodness sake the shit that has been going on in my body has been uncool. I mean I understand what I have… I get that pain is a part of my life… FOR THE REST OF MY LIFE (and I’m not yelling at you, just yelling in general). My level of frustration is pretty damn high right now… can you tell?

There’s a lot going on… many stressful events surround me and I’m trying to take it one day a a time. My best friend at the moment goes by the name of Self Sabotage. Are you familiar with her? She’s a real bitch. She follows me around all the time and she’s super bossy! I try to get away from her, but one way or another she’s always creeping up on me. Needless to say, she’s standing in between me and my well being. I tried to kick her ass out of my life a couple times, but she always catches me when I’m down and for reasons I don’t really understand she lifts me up just enough to make it look like she’s helping (for example when I ate that big ice cream bar the other day). Even as I write this I can feel her sitting right beside me… ugh.

I took a couple days off over Labor Day weekend so I could have a nice 5 day break from work. Guess what I did the entire time? Yup, you guessed it… nothing. I will honestly say I don’t think I have experienced that level of pain in years. From the Friday I took off until the Tuesday I attempted to go back to work, I could barely get from the couch to the bathroom…. my husband reminded me that every time I take one of these long weekends to relax, my body decides otherwise.

It’s exhausting. I am exhausted. I can feel myself slipping down that f’d up black hole and I’m clawing at the edges to not fall in. Normally I don’t want to write when I’m feeling this way, but today I felt like it would help. As I sit here and think about what’s going on in the world… honestly? I am one person in a world of wars, hurricanes, earthquakes, racism, ignorance, intolerance…. the list of horrible, tragic shit is endless. When I put my life into perspective I realize that what I have is absolutely fucking awesome. Way to turn it around, huh? I have to tell you… sometimes it takes stopping my life, sitting at my desk and writing to stop feeling sorry for myself and be thankful. That really just happened, I sat down not feeling very grateful and after thinking about it I realized how wrong I am.

I have to interrupt this blog and tell you… I am definitely being tested, as I am sitting here I’m hearing this drip drip drip from across the room and I’m thinking it’s the humidifier doing it’s thing… it’s definitely doing it’s thing. I got up to take a look and it basically drained all over my dresser… a full tank of water. I’m being tested.

Anyway! I could definitely fall down that black hole with all the crap going on in my life but at the end of the day I still have my family. I have my friends and we have a roof over our heads which is a lot more than a lot of people right now. I AM BLESSED (I’m still not yelling at you, but I’d love to be on top of a mountain yelling this at the top of my lungs)!!

I am in pain… I am depressed… and… I am blessed. I can take the bad as long as there is good and I thank God for all the blessings in my life.

If you are feeling down, please take a moment to stop and remind yourself of all the blessings in your life. It doesn’t mean your life isn’t hard, it just means it’s maybe a little better than you first thought. Take a step forward with me and kick that bitch Self Sabotage out of your life and start new. Every day brings you another new opportunity to try again… in fact, every decision you have to make is another new opportunity to make Self Caring your new BFF. We will stumble (trust me… I have fallen down enough times to make it from the top of Mt. Everest to the very, very bottom), but at some point you will get that mean girl out of your friend circle. I will start tonight by not eating that donut… damn, and it sounded so good too!

I am so thankful that I you have stopped by today. Please have a pain-free day.

I love to hear from you, please take a moment to leave a comment.

Gentle hugz,

Tamiko

Fibromyalgia at Fifty!

50… wow. I can’t believe that I am 50. I can’t believe how quickly the last 50 years have gone by. Damn! I have to make my life better. I realized lately that I spend a lot of time living for another day or another moment. On Sunday, my mind is stressing about having to start work Monday morning. During the week… “Lord have mercy, when will this week be over.”. On Thursday, I’m thinking… Just one more day…”. There’s a lot of, “I can’t wait until… XYZ“. When that moment or day arrives, my mind has already moved on. I really envy people who can just live for the moment. I want to train my brain to enjoy the now. In order to do that I have to somehow shut my brain off. It’s constantly processing… whether it’s curiosity about something going on 5 feet from me or thinking about a project at work or what will I do when I retire or what are my kids doing right now or what should I eat… I mean seriously. I could have kept typing until my fingers got numb because my mind started going 100 mph just thinking about what I think about!! Oh man, you have really entered into my world… Danger! Danger! Warning! Get out as fast as you can!! Once you enter this crazy ass place, I’m not sure if there’s a way out. At least I haven’t found a way out yet.

I keep looking at myself and thinking, when am I going to grow up? I have so much growing to do mentally… although I am pretty confident I way overachieved on the growing physically so maybe that’s why my mental side is so far behind. I used to be so independent and able. With all this medical bullshit, I have lost my way. The last few months have been really hard for me. Sidebar, how many times do I say that? I feel like I say that all the time… “The last few months have been really hard for me.” It’s as if I want to believe that it really has only been the last few months, when in fact it’s been so flippin’ long I can’t remember what feeling good feels like. If you ask me how I’m doing, I will give you the standard, “I’m good” or “I’m alright” or “I’m fine”. I’m not. I’m not any of those things, I’m feeling like shit… a lot… end of sidebar. Anyway, I have not only lost my way in general, I also got completely caught up with that sidebar. (I did warn you in the first paragraph that my brain was a scary place.)

Well… maybe I should start taking my own advice. OUCH! Damn! That really hurts to say that. I mean, I’m great at giving advice, but taking it? Crazy talk. I recently advised my daughter what she should do to sleep better. On another day I advised her on keeping a food journal so she can get a picture of what she’s putting into her body. I am always telling her what she should do when she’s stressed or angry… do I do any of those things? Welllllllll, I definitely do some of them, but for the most part… Not really. It’s hard! It’s really hard to make healthy choices. This is a typical conversation I have with myself…

Smart brain: “You should exercise today.

Emotional Me: “Hmmmmmm, I am in a lot of pain, I’m thinking maybe later… how about some coffee?

Smart brain: “Caffeine is not good for you and that shit you put in it to make it taste good is really not good for you.” (although the word good shows up a lot in that sentence, we all know there’s nothing good about this train of thought)

Emotional Me: “Just this once… last time, seriously, this will be the last time. I really want to be healthy” (followed by a cup of coffee and a carb)

A couple of hours later…Emotional Me, “I’m hungry.” (followed by me standing in front of the open refrigerator or cupboard)

Smart brain: “You should eat something healthyand before you pick something to eat… take a moment to answer this question, are you hungry or are you bored?

Emotional Me: “Screw you, I deserve to eat whatever I want.”

It’s basically all downhill from there. Sentences that start with “I deserve… ” come up a lot in my mind when it comes to food. Well, trust me, I have “DESERVED” (she says with a very sarcastic tone) a whole lot because as I said earlier, I way overachieved on the physical side of growing up! I need to come up with a better reward system in my mind. (Preferably one that doesn’t involve spending money or else I just open myself up to a different problem!)

I am a pre-diabetic 50-year-old woman with Fibromyalgia, Depression, ADD, Essential Tremor, GERD, Anxiety, IBS… shit I’m stopping there, that’s enough disclosure for one blog post. Why was I saying that? Oh yeah, I said all that because with all that going on, if today is not a good day to start getting healthy, what will it take? Do I really want to go to the doctor and be told I am diabetic? No.. no I don’t.  I definitely don’t want to hear that come out of my doctor’s mouth. I think I have heard her say enough already.

Today… right now, this very moment. This needs to be the moment I start taking better care of myself. I have a goal of 5,000 steps a day. (Don’t judge, I barely hit that once a week.) How about if I challenge myself to hit that 3 x a week? It’s not much, but it’s a good start. I actually went the entire month of April without any desserts/ sweets… then May hit and let’s just say, I didn’t just fall off the wagon, I think I fell off and have been getting dragged behind it for weeks. I’m telling you… as I write this, right this second, my emotional side has already started the fight. It’s telling me to go cut a slice of that chocolate cake in the fridge and eat it… it’s basically screaming at me to go do it. Bitch. Why do I have chocolate cake in my fridge you say? Because the other night I craved it so bad, my husband went out and surprised me with it. I will overcome that stupid Emotional Me and make better choices. I should not let my emotions influence my decisions. It never ends well when I do that.

I will choose to eat healthier. I will choose to move more during the day. I will choose to live in the moment and not worry about tomorrow. I will have faith that tomorrow will work itself out. I’m not in control of it anyway. I will think positive  thoughts. I will meditate to calm my brain. I will believe in myself. I will be healthy. I have to believe that with hard work the outcome will be less pain, less depression, less digestive issues.

My moment starts right now. I can do this. And now that I’ve said it out loud (or written it for all to see), I hope I can come back with some results in a future post.

Before I go, I want to say a huge thanks to Healthline for including me in the Best Fibromyalgia Blogs of the Year for the 6th year in a row!! It’s an amazing honor to receive this recognition. Take a moment to go check out the other blogs on the list.

Thank you so much for stopping by today. I wish you a pain-free day and feel free to join me in this quest for better health.

Gentle hugz.

Tamiko

PS. My girlfriend gave me a beautiful bouquet of flowers for my birthday. In the bouquet were these ginormous peonies. When these flowers start to open up and bloom, you really have to pay attention because it all happens in a day or two and once the flower opens up, the period of time to enjoy it is very short. This is what I mean by living in the moment. I put the bouquet right next to my desk so I could enjoy the beauty of these amazing flowers. Now you can enjoy them too!

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

It’s December… Give Yourself a Break!

where-does-the-time-goHappy December!!!!! Wow, where the heck has the time gone? For 11 months this little voice in my head said, “You need to start working on your Christmas list so you don’t have to rush in December and make yourself crazy and stressed out.“. I mean I honestly had this little voice talking to me almost every day… while at the same time this big booming voice responded with, “December is so far away you have plenty of time!“. Awesome. Well, guess who won. That big booming voice is so annoying.

It’s December and here I am, with a ton of projects to complete and… wellllllll….. I started three weeks ago. Brilliant! I mean, I haven’t been feeling great a lot this past year but that just goes without saying. How many really good days do we have on a continuous basis? I can usually get through a couple days and then I have a couple days that aren’t great. And seriously… it’s been a crazy year!

Kiyomi comes home today… YES! This kid away at college thing is great for them… freedom, free room and board, lots of free time… a lot of “free” going on. For me? Not so much FREE happening and my mini me is no longer here to hang out with and let’s be honest… she helps me with a lot. I am still trying to get used to the quiet. I am not sure I will ever stop missing the sounds of all the laughter from her and her friends. I can’t wait to hear those sounds again in the coming weeks!

The college experience hasn’t been all awesomeness. When your baby calls to tell you someone yelled an ugly racist name at her… on top of the national news of the law professor who dressed in black face and then the kids running around in black face on campus… it’s not so awesome. As a parent who is 9 1/2 hours away by car, you basically send an email to a bunch of people with “President” in the title and jump in the car and go support your baby. There’s nothing more important than ensuring your child feels safe… and IS safe! Well, the campus has a long way to go towards dealing with the race issues overall, but they have done an okay job helping Kiyomi. It takes time.

There’s that word again… time. Everything takes time. It’s so hard for someone like me who has the patience of … well I have no patience. I fully admit I have no patience and the anxiety doesn’t help at all. I’m not going to blame anxiety for all of it… I’m just going to blame anxiety for NOT MAKING IT EASIER! You know what I mean. Anxiety is always instigating, I swear it’s telling my body things like, “Make her sweat… good! Now make her heart race… great! Now let’s see…. what can we do to really make her want to scream at someone for making her stand in this long line… hmmmmmm, how about make her stomach hurt really bad!!! Yeah!!! That’s the one!! Perfection!“.  Thank you Anxiety. After all that, if I fall into Anxiety’s trap (which really doesn’t happen very often) and kind of lose it, Depression pushes Anxiety away and stands tall. Depression is always lurking around. Depression likes to remove all the color from my life and turn everything grey. Ironic that I always tend to go for clothes with grey. You gotta love mental illness! Okay you don’t have to love it, but you do have to live with it… so learn how to manage it so it doesn’t take over your life and control it. I am learning every day.

I am all over the place this morning. What else is new? Don’t get me started with ADD… hahahahahaha! Squirrel!

buddy-to-do-list

Buddy’s To Do List

I really just wanted to say to all of you out there who are dealing with pain, wh\ether it’s physical or mental or like me both, the holidays are very difficult for us. Let’s get through it together. Give yourself a break. You may not get through your long ass to do list. Let folks know that their gifts may be late this year… that although you’d love to, you can’t join every event… that this year, you are doing your very best to make sure you are healthy and happy so you can enjoy the holidays with family and friends. We don’t want to just give presents, we want to be present. Being present is the hardest thing for me. My mind is always racing with all the things that I need to do… I’d love to actually be present in the moment and enjoy it. That’s my challenge for December.

I have made it this far. We made it through Kiyomi’s senior year in high school, the search for the perfect prom dress, the search for the perfect college, the search for the perfect dorm stuff and the start of the freshman year in college a state away. If I can make it through the search for a perfect prom dress, I believe I can make it through December. :)

I’m off to get ready for another beautiful day. Thank you for dropping by!

Gentle hugz.

Tamiko

pinball

Do you remember playing these machines? this is what the inside of my head looks like!!

P.S. Okay I read through this a couple times and it truly is all over the place…  in the end I will leave it as is. It will give you a tiny glimpse (that is such a strange word) of how my mind works. It’s like a pinball bouncing around from thought to thought… and as a matter of fact it’s already moved on to stressing out about needing to pack for this business trip I’m leaving for in the morning. Oh yeah! Did i mention that I have to travel to the east coast for business for five days? Well, I’ll leave that little piece of information for the next time we meet.