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

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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

Day 13: 10 Things I Can’t Live Without

I am participating in the Health Activist Writer’s Month Challenge. Please visit WEGO Health’s blog and the WEGO Facebook page to find other writers tackling the same topics—or sign up for the challenge yourself!

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

God

My family

My friends

Laughter

Freedom

Books

Music

The beach

Blue Skies

70 degree weather

Do You Dream?

Are you are dreamer? With the amount of sleep I don’t get, I end up in that dream state a lot. I doze, I nap, I am in REM state…. I just don’t sleep-sleep like normal people. What I do … is DREAM …  in HD … vivid color!! It’s super crazy. I have been dreaming like this since I was a kid. I have dreams that have been going on, continuous or the same dream over and over again. I have these places in my dreams that I have visited many times at different ages. It is to the point where there are things that I honestly don’t know if it is real or a dream. These are moments that I will think about in a blink of an eye and then forget again (who the hell are we talking about here?). I have nightmares. My mom had an angel that she would put over my bed when I was growing up to help me sleep at night. I really loved that angel. I don’t think she realizes how much that helped me. Nightmares are the enemy.

In my dreams I visit people that have passed on. I have conversations with my friends and family about what is going on in my life today. I share ideas and life experiences like they are still with me. I wake up and I forget that they have passed on and I experience the loss all over again. I am a little better than I used to be, if I can tell myself that I am dreaming, I can sometimes prepare myself or even use my time in my dream to my advantage. Really strange, right? But there are times when I just want to lose myself in that dream and just let go… it’s dangerous. I don’t want to wake up. The pain of waking up is so deep, it will take days to recover. I know I will relive that dream over and over again. The pain from that experience, visit, unforgettable dream… one so vivid that it sometimes haunts me forever.

In my dreams I can do anything, I can go anywhere, I can see anyone.

I can fix anything, I can mend any relationship, I can overcome any challenges.

I also see myself struggle and I see others struggle and I feel and it’s not easy. It’s uncomfortable and it’s awkward and it’s real life. It’s not “dream” in the sense that it’s all nice and beautiful and wonderful and perfect. It’s a dream because I have my eyes closed and I am not awake. If I could write it out as it happens, I would do it. I would love to analyze it every day as I dream it. It’s difficult to do as I have too many of these short stories going on at the same time.

Last night I had a dream that I went to see a doctor. I checked in and wait to be called. The nurse who calls me back looks at me in an disapproving way. You know the look, the one that says “you look fine, why are you here”.  This female nurse tells me to come around and meet her at the door and she’ll take me to the back, so I walk to the other side of the counter and stand there and wait for her to open the door. As I’m standing there waiting for her to open the door, I start to feel strange. I can remember I’m holding some papers in my hand along with a book and my purse that my cousin gave me is on my shoulder. The next thing I know, I start to fall – in slow motion. I am fainting. I am falling to the ground, but I have no control, I cannot stop myself. I am going to seriously just fall on my face. This is what it feels like to faint! I can hear the people in the waiting room gasp as they hear me falling. THUD! I hit the ground. My head hits the floor and I feel sick. This is so surreal. I can smell the carpet, I can feel how hard the floor is. There is an older lady sitting in a chair just directly in front of my face, but she doesn’t know what to do. I am just embarrassed. I just fell flat on my face.

The nurse comes out the door and sees me on the floor and calls for help, “Someone call a Doctor! Damn, she fainted!”. I can feel her moving me around, but I’m not sure what she is doing. I am really not well. I recall nurses around and a man with a gurney at this point. I remember feeling the light from the windows coming in. The windows have dark brown wood around them. I am laying on the floor on my stomach and I am not able to move at all, I can feel the scratchiness of the carpet and I can smell the office. I felt really light headed and sick to my stomach. I could hear the nurse talking about getting me cleaned up… and then? I woke up.

I woke up. I was awake for about ten minutes and then it was off to another dream about visiting a girl I was best friends with when I was about eight-years old. I often dream about her and for some reason we are always going to the beach.

I wouldn’t mind dreaming so much if it would allow me to feel RESTED in the morning! My mom and my Godmother are/were dreamers. This is the gift they have both passed on to me.

Crazy, right?

Well, I can’t help what I dream. Do you dream? How do you journal your dreams? Does it help you get through your pain?

Apparently the pharmacies ran out of my pain meds in the bay area so I can’t get them until tomorrow. A week without them, how much fun am I having? Trying to be a good sport, that’s all I’m saying!!

I think my next blog will be about meds. I could use some advice on meds. Hopefully you’ll comment.

Thanks for stopping by. Look forward to your comments.

Take care and stay cool!

Tamiko

PS. The picture was taken by my daughter… pretty awesome, right?

What Would You Do? Stand Up For Your Pain!

The cameras are rolling…. All eyes on you…. You have probably seen the TV show, “What Would You Do?” I was going to blog about a situation I was in a couple of weeks ago. A truly, stupid situation that I needed some time to get through, mellow out and say to myself, GET THE HELL OVER IT! I wanted to vent and get that shit out of my system, but it would not have helped and it would not have helped any of you! I have to keep reminding myself every hour, every minute of the day to stay positive these days. It’s a challenge, but sometimes that’s what one has to do. Right now, that’s what it is. Prayer and giving my cares and worries over to God is what I’m doing.

My life has been seriously out of balance. Work has been crazy busy – way too many hours. Family and friends close to me are in need of God’s healing hands. The weather has been crazy, mostly rainy and cold. I’ve been in a constant flare for what seems like forever – it’s only been a few weeks. For the first time in a long time I have increased my dose on one of my meds. It sucks, I don’t know if any of you feel this way, but increasing meds makes me feel like a failure, like I’m not managing my pain like I’m supposed to. I agree to a certain extent that I shouldn’t feel that way, but at the same time, I also feel I should be in control of my body. FMS is a crazy place to live. Depression has stolen a lot of my mind the past few weeks and I really want it back. I have fought and fought and fought, I FINALLY feel like I may be starting to come back, it’s so damn hard. It’s like climbing up hill through quicksand (because I have done that before, right?). Trust me, my family really, REALLY prefer the not deeply depressed mother/ wife over the scary/ ugly mean lady that’s been living in the house lately. She scares me too.

Speaking of my family, well specifically my husband… I am not CO-dependent, I am SOUL-dependent (and yes I meant to spell it that way) on (on? of? to?) my husband. I have been blessed with a husband who takes wonderful care of me. He does everything for my children and me. He literally does all the cooking, cleaning, driving, care-taking… this man does my hair, when my daughter isn’t doing it! He also deals with all that comes with chronic pain and depression, oh yeah and let’s not forget – throw in a little bit of ADD. What an effed-up combination! After almost 25 years together he has to be wondering what the hell he signed up for!! There is no return policy here. He had 30 days, but those days have passed and he’s now stuck with me. Thank God!

So! I started out talking about a TV show that puts folks in really awkward situations. A show that ultimately pushes those same to people make uncomfortable decisions. Now I ask you, when you are in a situation where you need to stand up for your pain, do you? Do you stand up for your pain or do you end up suffering? I made a decision to stand up for my pain and I also ended up suffering because I stood up. I am happy I made that decision because I was able to really see some true colors come out.

At the end of the day, most of us can barely stand up for long periods of a time, so why suffer any more than you have to, right? I mean, c’mon! Please do yourself righteous and STAND UP FOR YOUR PAIN!

Thanks for reading! Please tell me what you think, leave your comments and, as always, stay cool!

Tamiko

This Too Shall Pass… I Am Blessed.

Wow… Where have I been? It’s been over two months since I have written something… and to be totally honest, it’s been over almost that long since I have even visited my blog page. Six months ago, if someone would have said I would let that let that much time pass without viewing my page, I would have just ignored them because I would have thought to myself “NO Flippin WAY!”. Well, it’s true. Now that I’m here, that old familiar feeling is back. It’s the middle of the night, I’m sitting in the dark, on the couch with just the dim light from my laptop…. except this time… same couch – different house.

Where do I start? My life, my life, my life… Lord, I know You do not shoulder more than one can bear… I. Just. Am. So. Very. Tired. I really do try not to complain, I know there are people so downtrodden and their lives really suck, I know I have no right to complain…

Here’s the deal… let me bottom line it for you… I feel like I am starring in a country song where you play it backwards to figure out everything that has been lost (I should win an award for this one!)… I am just not mending… I don’t even know how to mourn anymore. I know hospital emergency rooms and intensive care units up and down the west coast and unfortunately so do my children. What started out as a good learning situation for my children when they were young, has turned out to be a continuous cycle of “Whose Funeral Are We Going to This Month?” … Scarred for life.

Where the hell was I going with this? Oh yeah… I was bottom lining it… let me get back to it…

So! Important in a Chronic Pain Patient’s life… Truth. Honesty. Well in anyone’s life, but more so in a chronic pain person’s life because you spend your entire life explaining your pain to people who do not believe you!

Shortly after the passing of my very close friend Steve’s passing, I lost my Godfather which seemed “suddenly” to me (way too soon as I just really wanted more time!)… Very close after that… we had a traumatic experience with a dog that we were really hoping to adopt (all of my 4-legged blogger friends would totally relate to my experience but Lumpy is in a happy home now!) Well, my son entered college and turned 18 and then my husband and I found out we needed to move out of our house we had lived in for over 10 years. We had less than 2 weeks to vacate. So! I found us a house to rent and we packed up our memories and our furniture and moved to our new “home”. That was the 1st week of November… and did I tell you I was on disability and went back to work the second week of September?

For those of you that were around my blog last year… I was blessed to get out and help pick the tree this year and my husband and I trimmed it this year!

I have this horrible feeling there is a big ass dam inside my body somewhere secret stored up and it’s just going to open up one day… God help the folks that are around on that day. Poor souls… I have a huge smile on my face right now… because Lord knows, all you can do is smile when you think about the poor souls who will have to deal with my ass when I unload on them!

So, now that you are caught up with where I have been and what I have been up to since the last time I blogged….

After all I have been through…

my family still makes me laugh at least once or five or ten times a day.

My parents are still with me and I thank God every single day for this.

I am blessed.

I still have my brothers, sisters and their families and my friends and their families around me.

I am blessed.

I still have my five senses.

I am blessed.

(Ummm I did not say I HAVE sense, don’t get crazy here).

My husband still wakes up every morning and goes to sleep to me.

I am truly truly blessed.

I have fibromyalgia, ADHD and chronic depression and yes…

I am blessed.

For me, it is important to remind myself to remember what I have and to do my best to stay positive. Please be positive with me. There’s enough negativity out there…

Thanks for reading! Stay cool…. and God bless all of you and Happy Holidays!

Integral Tai Chi is My New Depression/ Fibromyalgia Pain Drug of Choice!

“My body is healthy… My body is healthy… My body is healthy… My body is healthy…” I am chanting this in my head while next to me a lady is not so quietly snoring… interestingly it does not bother me, although there are moments when I want to laugh (but cross my heart…. I don’t). While I chant this over and over in my head, I scan my body for pain and if I find any, I mentally push it out of my body. You are wondering what I am talking about… I get it, I would be wondering too.

This is the relaxation segment of my Integral Tai Chi class. It is the last 30 minutes of the 2-hour class I have been taking… my new favorite depression/ pain drug of choice. As I am laying in the dark on my mat in the “corpse” position and the instructor has directed us to relax every part of our body and told us when we awaken our bodies will be healthy. It becomes my chant while I lie there for the next ten minutes. I feel like this class has changed my life. Sounds pretty crazy, right? Well, take me seriously and find a class and give it a try. Here’s the class description:

Integral Tai Chi is a self-healing system that integrates tai chi, yoga, relaxation and meditation to heal the mind, body and spirit. This comprehensive approach involves a series of 10 body movement postures each designed to increase balance, awareness, endurance, flexibility, flow, concentration, energy and spiritual transformation. Integral Tai Chi can be easily learned and practiced by all ages and body types.

I have been able to do things that have caught me completely by surprise… okay, for example… remember in Karate Kid that crane move that all your friends growing up have done and said “I’m the Karate Kid!!”…. I CAN DO THAT!!! SHUT UP!! I CAN!!! Unbelievable… I can actually balance on one foot!! I almost fainted with surprise the first time I did it… I started to giggle. I really did. No one can even understand the gravity of the situation. balancing on one foot, WHILE lifting my arms UP IN THE AIR like that is just CRAZY!! LOL!! For all you modern folk that do not remember Karate Kid (the original… God forbid…) it’s the Crane pose in Kung Fu Panda!

I can’t explain it, I don’t get it myself, but the stretches that are done… although they definitely are challenging for me, feel soooooo good! I feel really good both mentally and physically when I finish this class. I have felt like a totally different person the last three weeks. My husband tells me he is afraid to break the spell… he wishes I could take this class every day. I think that might be a bit much. :) I mean, what is the message he is sending to me?? LOL!

For me personally, I think I said it in a prior posting, the mental effect that this has had on me is so significant… the healing of the mind and spirit and the pure focus on positivity and exiting frustration, stress, negativity from the body/ mind… this is just what I need. I sleep better on the nights that I go… although this time, my beautiful dog decided to wake me up at 4:00 in the morning to go outside and I decided to write this blog posting instead of going back to bed. I also have been able to relax enough to read an actual book… this is amazing. I haven’t read a book from beginning to end in so long I can’t remember when. I have finished three books in the last two weeks. I usually start a book and then after the first couple pages or chapters, put it down and never pick it up again.

I know a lot of you are in pain. If you are in the bay area (San Francisco to San Jose on both sides of the bay), these classes are FREE, take advantage and give it a try… “listen to you body” and do what you can, but stay for the last 30 minutes. If you are not in the bay area, find a local class and it is very possible that you may have free classes as well. I understand this ITC organization is in Southern California offering free classes (this is a non-profit organization). This particular group is AWESOME! I think you can tell, I am pretty jazzed about this… just a little bit… :) I’ve been in pain a very long time… This is the first time I have found something that is FREE and works and not a drug! nice… it’s a blessing.

http://www.css-sanjose.org/eng/itc.html

  • 30 minutes of warm up
  • 60 minutes of 10 body movements
  • 30 minutes of relaxation and meditation

I could barely walk when I went to the first class… I am walking significantly better… ask my dog! :)

Thanks for reading! Stay cool (literally! It’s been pretty hot out there!)

Hugs….

Tamiko