2012, Here I come!

2012… Damn, how did it become 2012 so fast? Aren’t cars flying in the air now? Doesn’t everyone have robots that do everything? Do we all live in space? Oh wait, that’s the Jetsons. When I was growing up I really thought that stuff would come true in my lifetime. I gotta tell you, I’m glad it didn’t! Remember how people thought the world was going to end in 2000 and again in 2012? I’m very happy those predictions didn’t come true!

Life brings many interesting changes… smart phones and the quality of the picture in HDTV‘s much less these new fangled tv’s that are 3d? It is just insane! I watched Rise of the Planet of the Apes last night and I must say… it was really good. I also thought the first one years ago was pretty good at the time I watched it… I don’t necessarily believe re-makes are a good thing, but this movie, this change was good. Remember how you had to actually talk on the phone? Oh yeah, and the phone was connected to a wall so you also had to stand in the kitchen in most homes, unless you were lucky enough to have one in your room. I do wish many times that my children had to use those phones instead of the mobile phones… but I can’t complain about that, those mobile phones have saved me many times.

Where am I going with this? Well… like the world, like technology, like life… my conditions change. Sometimes it’s not so good, but these days I am doing okey dokey. I started back on an anti-depressant (I think I already told you), some things I have to accept. One of those is my depression is not something I am able to manage very well naturally. I felt GREAT being off all the drugs, but I started to feel really depressed. I know you all know what I mean. I talked to my doctor and we agreed it was time to get medical… I mean medicinal… you know…. back on a drug. Taking a drug, the simple fact I had to flippin’ take a drug, depressed me – but I had to accept it’s okay. It’s okay to take something to help make me not have those crazy ass thoughts that we all run away from. Okay we don’t run, most of us, because running is a bit challenging :). We all walk quickly away from (some of us have our own version of a quick walk which for perfectly fit folks may be considered a slow walk – but hey! We gotta be proud of what we can do). Let’s be real… if you have depression you just sink into these thoughts and they grow like a fog around you and it just gets thicker and thicker until you are completed consumed and you can no longer see blue skies and feel the laughter anymore. So! This is why I am taking an anti-depressant. I am taking the short life Wellbutrin and it’s all going okay. It wasn’t great when I first made this decision, I started by taking Prozac and that just made me feel like a slug with no obsessive thoughts. I switched and now I’m feeling alright. It’s all about managing and accepting change.

If you have Fibromyalgia, ADD, and/or Major Depression like I do, you should be a professional at managing change. Certainly doesn’t mean we enjoy or want change – it’s just a part of our daily lives. If we have plans and we wake up feeling like shit… well? We have to make the best of staying at home and enjoying some down time. We have tried every medical and natural cure, or better said, “fix all” out there. Each time we go through the expectations of taking something new and the outcome and reality that there is no cure today (notice I said “today”). This is managing change at its best (or worst as the glass is half full goes). Everyone with a medical condition faces these types of challenges.

I take each day as it comes and I do my best to appreciate my good days, be thankful for the awesome things in my life and accept change. This is certainly not easy. One of the awesome things I am most thankful for is my support from family (including the 4-legged ones) and friends. I have the most amazing group of folks in my life!! They are all going through their own trials, whether medical or emotional, and I only hope I can be as good to them as they are to me.

2012 is going to be another year of change. It’s going to be awesome because I am going to make it awesome. I hope you do the same.

Please let me know how you are doing, I love hearing from you!

Keep on reading and stay super cool. :)

Tamiko

The Progress We Have All Made… Fibromites Unite!

I woke up this morning thinking about my blog. I cannot believe I started writing this 2 years ago. I realized, from reading my old posts, that I have come a long way. When I say “Fibromyalgia“, I don’t get as many blank stares, my doctors at Kaiser all “get it” now and I feel like my support system is pretty good. Not just pretty good… Damn good! I hope if you take some time to think back… you can see the progress you have made, that your support system is good, that you can see more blue skies days than dreary grey days.

I cannot believe that I have had over seven THOUSAND, seven HUNDRED hits on my blog!! WTF?? I mean, seriously, if you only knew. When I first started writing, I remember looking at other blogs and seeing how many hits they had and just wishing I could get someone to read my blog. I was so happy when I hit 100! To have had so many folks stop by and read for the last two years is truly amazing. I really appreciate it, I love to get comments and read what other people’s lives are like. It’s so important to me to know I’m not alone. I’m not crazy (okay, the jury’s still out on that), I’m not in this crazy painful world, going through these always new and UNexciting pains, on an island by myself. I am very sorry for you that join me in this world… wait, let me be clear… not sorry FOR you, just plain sorry. I wish none of us had this f’ed up thing we call FMS. But! It is what it is, and I, you, we …. are not alone, we are in this together. Fibromites Unite! (we need a good kick ass theme song  in the background when we say that)

I looked back in my blog and came upon this letter that someone else posted on their blog. It still holds true and I wanted to share it again. I hope you all are having a great day… foggy brain and all. It’s the last shopping week-end before Christmas, don’t overdo it. Take some time to reflect on the progress you made and give yourself a big round of applause and smile. Most importantly, smile. We don’t do it enough… find someone to laugh with today and think positive. Throw the negative shit out the window, hug you family, your four leggeds and be thankful that we have another day to face the world. Make it a good one!

Best holiday wishes to all of you!!

Hugz.

Tamiko

Letter to people that don’t have Fibromyalgia (FMS) and/ or MPS (Myofascial Pain Syndrome):

By Billie Chainey

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”.
When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time; in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

Please understand that being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour.
And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything.
That’s what FMS/ MPS does to you. Please understand that FMS/ MPS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”
If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.
Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take this pill/ supplement… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.

Another statement that hurts is, “You just need to push yourself more, exercise harder…”
Obviously FMS /MPS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/ MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!) but it is not created by depression.

Please understand that if I say I have to sit down/ lie down/ take these pills now, that I do have to do it right now –
it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS/ MPS does not forgive.

If you want to suggest a cure to me, don’t.
It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there were something that cured, or even helped, all people with FMS/ MPS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/ MPS, and if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.

In many ways I depend on you… people who are not sick…
I need you to visit me when I am too sick to go out…
Sometimes I need you help me with the shopping, cooking or cleaning…
I may need you to take me to the doctor, or to the physical therapist…
I need you on a different level too… you’re my link to the outside world…
If you don’t come to visit me then I might not get to see you…

And, as much as it’s possible, I need you to understand me…

I would also like to add a personal note to this that isn’t listed above that would be a tremendous help emotionally.

Please don’t make my disease about you… .or say things that make me feel like I let you down. Things like, “Oh, I was hoping you were better today.” make me feel guilty and that I have somehow disappointed you. I understand this disease effects everyone involved, but the last thing we, as the sick ones, want is to burden anyone. We have plenty of guilt for being so dependent on others as it is, we don’t want to feel like we’re disappointing you or making you feel bad by saying that we don’t feel good. We don’t expect you to say anything about us feeling bad as a matter of fact. Just be there… hold us when we need to cry from the pain or frustration of being so limited. We know you care… otherwise you wouldn’t come around or even ask how we’re doing, but please don’t make us responsible for your emotions too. When the bad days hit… we’re doing our best to deal with our own.

If you must say something it’s ok to say you’re sorry for what we go through.. but please don’t make us feel like we’ve killed your hope.  You are our source of encouragement.

What Are Your Christmas Memories?

New post, new holiday… the last couple weeks I have really been remembering a lot about this time of the year growing up. I realize now, as I’m sure many of us do, that I was so blessed. My mom was the bomb diggedy! She is and was the most amazing mother and woman. Holidays was her time. I look back and I’m amazed and so thankful for all she did.

The house had the aroma of Christmas, the tree, the baking, the wood burning in the fireplace… wow, I love those memories and how special that time was. My mom baked and baked and baked, we would spend days baking cookies and bars. Decorating cookies, man I looked forward to that all year. She would mix up all the colors for the icing and break out all the cool stuff to decorate the cookies and then set us free. She would decorate cookies with us and hers were always so elaborate. She broke out the toothpicks to really get the detail on those cookies. I cherished those cookies, I never wanted to eat them they looked so good! Of course they tasted amazing too, so I used to sneak as many as possible. It never stopped there though, she must have baked dozens of different kinds of cookies. I remember all the dough in the fridge waiting to be shaped and baked. Even after I grew up, moved out of the house, had a child… she still continued to do all the baking. To think of all the work it took to make all those goodies, it just amazes me.

Of course baking was just a part of the holidays, my mom was so crafty! She made ornaments and we all pitched in. I have all the ornaments on my tree and every time I decorate the tree, all those memories come flooding back. We would sit at the dining room table and she would teach us how to make these cool ornaments. We would be the pain in the ass kids and she would just keep going. I cherish all these beautifully crafted ornaments, the time she spent making them is so apparent in the detail.

My mother would put up the nativity scene with the christmas lights put up around them with all the angels and the sense of global awareness. Ornaments and angels from all around the world, recognizing the importance of the season. The time and effort that she would put into the decorating, I loved it and I miss it now. Of course, I didn’t appreciate the effort at the time as much as I do now that I have taken over all the decorations. Now she gets to enjoy the decorations that we put up in our home.

I remember being at home and she would go in her room and shut the door and tell us we couldn’t come in. They hardly ever closed the door, but we knew she was up to something in there and on Christmas morning all these beautifully wrapped gifts would be under the tree with our stockings full of goodies. Trying to figure out what was in the presents and getting to pick one present to open on Christmas Eve… brings such a great feeling of happiness.

These memories are so important as I attempt to instill the holiday feeling in my own home now. I am not even close to the holiday elf my mom was. She now sits back and enjoys the grandchildren during the holidays. It’s now time for us to carry the holiday traditions forward.

Growing up we used to always go to my grandparent’s house and hang out with the aunts and uncles and cousins. I loved those days! Driving down to L.A., the anticipation of getting to the house, unpacking the car late at night, tired as hell… but so excited to be there! My aunts and uncles and grandparents have passed now, I can’t imagine how difficult this must be for my cousins. It must be so different for my folks as well, different doesn’t mean bad, just different. I’m sure you understand what I am talking about.

We have created new traditions in my family since marriage and children. We always drive down Christmas Tree Lane in Palo Alto to see all the lights on the houses, we bake cookies with our best friends and the kids make crazy sugar cookies. Christmas Eve we go to our best friend’s house to celebrate with them and our Godchild, Christmas day we stay home (like we did growing up)… my brother and parents come over in the morning and the kids open their presents. The rest of the family comes over throughout the day and we eat and sleep all day. Thank God for the friends and family who continue to make  Christmas so wonderful. My own craftiness comes in the form of scrapbooking. I make calendars and put the best pictures from the year to create a memory from the previous year.

I thank you for giving me this opportunity to share my most cherished holiday memories with you. I hope you share yours with me.

Remember the reason for this season and I wish you all peace, no pain and happiness during this time.

Hugs to all of you (gentle ones of course)!

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!

Fibromyalgia and Creatively Finding Your True YOU…

Topsy Turvy (album)

Image via Wikipedia

Post #500 My Foggy Brain… take 5… annnnnnndddd ACTION!

Yeah right! It’s not really my 500th post, but it is about the 5th time I have tried to write a post for my blog. I don’t know what’s wrong with me, every time I start/stop, start again or even finish… something doesn’t feel right. I’m just not feelin’ it. The vibe is not all good. You get what I’m sayin’… it has to be right, to actually push the “Publish” button! Once the content is out there, I need to feel good about what I’m sharing. I am always honest and give my best when I write and I don’t want to start half assin’ things now…

My world has been topsy-turvy, I always wanted to say that… topsy-turvy… Seriously, my life as a medically disabled on-leave full-time person is very different. It took three weeks just to realize I actually wasn’t working. One week to transition my work away, the second week to recover from the prior week of transitioning and the third week was the last week of the summer before school started, in addition, we had some getting ready to do for a family wedding. Let me just say this past week was the fourth week and I experienced a full-on flare for a few days and then recovery mode. Life definitely does not stop for anything.

I will say this… and this is not easy to say. I have chronic depression and I have had it for a very long time. Shortly after going on this medical leave I fell into a major depression. I have been doing a lot of creative journaling and prayer and listening to my Joyce Meyer podcasts everyday. I can feel myself coming out of it, it’s been almost a month. With the journaling to get clarity about some things about myself and my faith exercises along with my physical exercises and the support of my family it has helped to bring me to a better place.

The reason I shared that with you is to show you that it is possible to go from the crappiest place to a better place … but it definitely takes work. As I sit here and type I realize I actually did do some work to get here. As I smile I CAN say, “I didn’t just sit on my ass for the last 30 days.”. Not that I really did believe I sat on my ass for the last 30 days, but it is so far removed from working 12 hours a day that I didn’t actually realize what I had accomplished until right now.

In “finding” myself (I just laughed when I typed that because a girlfriend and I just discussed this phrase last month and “finding myself” in our discussion meant having an affair to a lot of other people…. so if that’s your definition… let me interject… NOT my definition!!)… okay pay attention, back to what I was saying. In my creative journaling to get to know myself better and find out what I really want out of life I bought a blank journal book and a whole lot of color pencils and asked myself some questions… in case any of you are going through this, I thought I’d share some of them with you, as well as a cool website I am using:

  • I just started with blank pages and wrote out “I Am…” on one page filling in the page with colorful descriptive words that I kept to less than 15 and all positive, on two pages I drew out a big heart and wrote out “I Love…” at the top and listed everything inside the heart… you get where I’m going with this – you can make your own lists to get to clearly define your own YOU.
  • creativity 101: discover, explore+empower your creative genius. This e-course is free and it’s pretty cool so far. Check it out, for all you creative types, there are weekly courses, meditations and you work at your own pace. for a free course, it’s pretty well done. http://www.abccreativity.com/creativity-e-course/
  • My big winner this week was finally, after a year of procrastinating, taking the integral tai-chi class! Why did I wait?? I loved it! It was two hours and it was relaxing, challenging, spiritually uplifting, mentally uplifting, physically I felt better when I left and I’m looking forward to the next class… oh and did I mention it was FREE?? These classes are offered through the local libraries so they are always free. With all the hype about Tai-Chi and Fibromyalgia, now is the time to try it out… you won’t regret it!

To finish my post, I went for a walk tonight with my two beautiful children and my crazy dog. It’s the first time I have done this in a very very long time. In fact, I cannot remember the last time I have gone for a walk like this. I really have to cherish these moments, in a few weeks my son goes off to college and soon I fear I will be “invisible” to my daughter. I can feel it coming… It was really nice to get out of the house and be able to walk for 30 minutes. My crazy, funny dog loved every minute and she kept us all entertained (as usual). I really need to give that Caesar Milan a call… I love my dog, but she has that psycho thing goin’ on whenever she sees another dog on a leash…. off leash she is pretty awesome… well… she has her moments… as long as everyone is off leash she is really awesome… honest, she is. look at her pictures, you know she is! she is totally submissive when she goes psycho… she just has this crazy bark that sounds like she is kujo-dog… all the while wagging her tail and as soon as she gets close to the dog, she rolls over to her back… but how would the other owner KNOW that?? They have to be a true dog lover to know that…. and not everyone is, sooooo anyway… how did I get on this?? oh yeah, I am easily distracted…. anyway… I love my dog and you would too if you met her! :)

Hey, thanks for stopping by and please let me know how you are doing today!

Stay cool

Tamiko

PS. The links and that picture are brought to you by this new fancy function in WordPress that I’m trying out… so I may have gone a little crazy with it… what do you think?

PPS. I am having a difficult time finding a theme that I like… hence the constant changing of the themes… still not loving this one… waiting for one to get published that makes me go WOW!

Fibromyalgia… in 10 Words

Ten words…

Fibromyalgia

invisible

inconsistent

relentless

insomniac

individual

frustrating

disabling

chronic

humbling

acceptance.