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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

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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.

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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

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I am thankful…

Today is a day to be thankful. I love this holiday. The food, the company, the weather… everything. This is the time of the year when memories are created and cherished. People who are no longer with us are remembered and friends and family gather together to celebrate what we are thankful for. It’s a season of giving.

I am going to make this holiday season a good one. I am off the meds that were making me crazy and I feel, and I mean I really feeeeeeel much better than I have in years. I am focusing on my mental health. That is a bigger issue for me these days than my pain. Don’t get me wrong… the pain is always there – but I struggle a lot more with the depression and anxiety these days. This time of the year is always challenging, as I’m sure many of you can agree. I really try to work on my mental health, it is a minute by minute task. Each minute of every hour of every day, I have to work on managing my mind. It’s exhausting, but at the end of the day, it’s worth it. I know with stress and frustration or any of those negative feelings/thoughts comes the pain… with pain comes the negative thoughts, frustration and stress… it’s cyclical. It all starts and finishes with me maintaining a healthy mind.

I have to accept that there is and will always be physical pain. I just can’t allow it to manage my life. I am good at getting frustrated and pissed off when I’m in pain… it just doesn’t help. Yeah pain sucks, no question… but that kind of thinking just tanks me. My depression eats that shit up and will take me and throw me into a downward spiral that I have to battle. I refuse to go there.

I get up every morning and go to bed every night reminding myself what I am thankful for. This keeps me going and works against those damn negative thoughts. Which brings me back to today. Today is a day to really be mindful of what we are thankful for.

I am so very thankful for all the blessings in my life. I have the best family and friends a girl could ask for! My husband and I have an awesome extended family and we are blessed to have such a great support network. The friends we have are a part of our family, I know no matter what – we are there for each other and we treasure everyone in our lives.

It’s been one year since we have lived in this house. It’s “home” to us now and we are looking forward, not backwards. It’s taken a long time to get to this point, but here we are. I still look around and appreciate how God works and I am amazed.

I may complain about my job, but I have one. This job allows me to work from home with flexible hours and most importantly, I have balance. I have balance for the first time… maybe ever.

My children… oh those beautiful kids. They are growing up… and way too fast! The one characteristic about them, that absolutely keeps me going is the smile and laughter they bring in my life. My daughter entertained me last night for hours, I haven’t laughed that much in a long time. She is, as she puts it “jennifer jamazing”! My son walked in the door, coming home from college for the holidays and I just wanted to cry. He is the smartest person I know (which makes it flippin’ difficult and impossible to argue with him! :), but the level of knowledge, and his thirst for knowledge is awesome.

I am thankful. This life I have is more than pain and depression, it’s full of love and life.

I hope on this Thanksgiving day, you are able to get beyond your pain and relax and enjoy life. Don’t overdo it, just keep it simple and remember it’s the relationships that you most treasure, that’s the priority today.

Thanks for reading!

God bless.

Tamiko

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Pain and Parenting

We have a son in college and a daughter in middle school. Both of our kids are amazing. I thank God every day for keeping them safe and healthy. I know that there is only so much I can do in the short time I have with them before they go off on their own, only so much advice I can attempt to give.

My life as a parent is challenging living with the illnesses I have. The best I am able to do is to share my experience living with depression and ADD and try not to feel guilty for the disabilities I have with my pain (both physical and mental).

Guilt is like stress – it’s a killer. I have a lot of it when it comes to being a parent.

B.F. (Before FMS), I was a serious work-a-holic. I worked 14 sometimes 16 hour days, 7 days a week. I would literally roll out of bed and start working, drive to the office and work until late at night and drive home, check my email again and then just barely make it in the bed… sleep a few hours and do it all over again. I did this until my body broke. I went from crazy, insane drive myself to exhaustion on a daily basis to never being able to recover again because I was broken. Years later to be diagnosed with Fibromyalgia.

My children have… suffered is a strong word, but they have had to adapt to me being unavailable due to my work and then unavailable due to my pain. When I say there is guilt there, that’s an understatement. There are a lot of times when I feel like a failure simply because I can’t drive. Those people who complain about “taxi’ing” their children around have no idea what I’d do to provide that service. I see that time as a good opportunity to have 1:1 time with the kids, my husband has learned a lot in the times he has driven the kids around.

It takes a lot to work full-time and manage this crazy illness. I know a lot of people do it, this definitely helps me to have hope. But, I’m telling you – by the time Wednesday rolls around I’m starting to get very tired. Thursday? Counting the hours and on Friday! Just forget it! By late morning I can barely hang on. The week-ends are about trying to relax and not over-do it so I can start all over on Monday.

How does this work with parenting?

It’s definitely about teamwork. Although sometimes I get very jealous. My husband does it all… he cooks for the family, he transports, he does the shopping, he is the “go to” guy in the house. I know I shouldn’t be jealous, but I want to be that person… I want to be the “go to” gal. The problem is, I’m in no condition to do what he does. I’m unreliable. I’m inconsistent. At the end of the day, literally, my husband really IS the guy. If it wasn’t for him this family wouldn’t function.

Reconciling these emotions that I have is tough. How can I be upset when everyone is being taken care of? I should not be complaining, I should be happy. It’s a blessing. At the root of all this, I want to contribute. Practically and emotionally. Not being physically or mentally able to do this kills me. I feel guilty that I am not able to do more, that I didn’t make the choice to do more when I was working all those hours. Like I said… guilt is a killer. I can’t let it win.

I know, in my heart, that my children love me. I know that my working provides for the family. I know that I can’t do it all or, a lot of the times, even more than what I do. It’s up to me to accept who I am today and constantly strive to be a better and good person. I know God has a defined plan for all of us. All of this, I know. But still, I struggle with the constant roller coaster of feeling okay, feeling great, feeling okay, feeling like shit, feeling okay, feeling great! That roller coaster creates a lot of frustrating emotions and wreaks havoc on any kind of planning in my life. This makes it tough to be an active participant in the family, hell it makes it tough to be an active participant in LIFE.

The pain, mental and physical, is not a small issue in parenting. I can’t expect my kids to know what I’m going through and how it affects my behaviour and communication. It’s not their responsibility to figure it out, they have their own lives to lead. It’s up to me to do a better job of communicating and work on patience and mastering mindfulness thoughts.

Don’t let the pain win, right? Mindful meditation, prayer, yoga… all these things are helping me make it through. We have all had and will continue to have challenges that we face, it’s all in how we face them to get to the other side.

As always, I’d love to hear your comments. Thanks for stopping by!

Stay super cool!

Tamiko

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How clear is your head? My fibro life post-detox.

It’s been exactly one month since I last posted to my blog. I haven’t been here. I haven’t checked my blog, I haven’t been on Twitter, I haven’t been social networking much at all. I have just been trying to live and take every day as a new day. My new life without meds. This is very new and uncharted (honestly I thought the word was “unchartered”, but it’s apparently not a word) territory for me. I have been on some type of medication for as long as I can remember. Meds for depression, meds for pain, meds for insomnia, meds for migraines… Lordy! There is definitely a prescription for every ailment. It’s super crazy when you think about it. The pharmaceutical companies definitely make money off us chronic pain / depressed folk!

Since going off my daily meds, I take Flexeril for muscle pain every 2-3 days. I like it because I don’t have to take it everyday and there’s no side effects if I DON’t take it, and the big benefit for me is it knocks me out at night. Not having that requirement to take a pill every day and multiple times throughout the day is incredibly important to me. I have had so much crap in my body for so long, it’s nice to only take pills when things get really really bad.

My head is so much more clear since going off the meds. There’s the good and the bad with this. I have reality in my face at all times. Who wants that? LOL! Honestly, my reality NOW, is so different than it was on those meds. I am doing a hell of a lot of self-talk, let me tell you! It takes a lot more to maintain a stress-free life in this new world.

… and did I tell you? Oh my gosh!! Stress is the daily devil I fight. Now, when I get stressed, my body retaliates like nobody’s business. Instant pain or instant headache or instant upset stomach… or my very favorite – instant emotional breakdown (ya gotta love those), etc. This stress stuff is no joke. Living and thinking like those professional “be happy” people is not easy. “Don’t sweat the small stuff!”, really? Live my life and let’s see YOU not sweat the small stuff. Sometimes the small stuff just gets me flippin’ frustrated and yes, I stress (I am human y’know). I am not saying it happens everyday, but it only takes ONE TIME and my body is like, “eff you! I’m retaliating!”. Don’t even get me started about what I would define as the “big stuff”. I think we can all agree, stress sucks.

Where was I… oh yeah, my head is clear – let’s not go crazy, I’m not ummmmm, “normal” like I once was pre-FMS (as is evident by my ADD writing you are reading right now). This is my new “normal”. I can do my job and feel pretty good about it vs. doing my job and wondering if I was making any sense a lot of the times. Towards the end, the drugs seriously, and I mean SERIOUSLY (in caps and super duper bold) fucked. me. up. (excuse my language but I need to be aggressive with this)! It still scares the crap out of me to look back on those last couple of months. I know I have harped on this, but I cannot imagine how many people are on drugs and the side effects are doing more damage than the actual illness they are trying to treat. That was definitely the case for me (can ya tell?).

I am ready to start with a different regimen. Exercise, good healthy food and targeted vitamins and supplements. I know this is not some crazy new idea – but for me those first two have always been challenging for me. It’s time I stop screwing around and really make a go of this.

I have noticed lately sugar definitely effects me nowadays. This is not cool. I mean seriously, I have the world’s craziest sweet tooth these days and every time I try to eat something sweet – BANG! upset stomach and a headache. Really, really, REALLY uncool. Fibromyalgia, depression, ADD and now sugar is a problem. Awesome.

I also tried the gluten-free diet… annnnndddd as my God-daughter says, “I think Godmommy needs the gluten back”. I actually was feeling worse… weird, right? I never said my stuff made any sense. It’s damn confusing to me all these different diets, vitamins, supplements, approaches, eat this-not that… ARGH!

Well, I would love to hear what you are going through and please share your experiences. It always makes me feel better to know I’m not the only one.

Thanks for stopping by! Stay cool!

Tamiko