The View From My Room

I can’t believe it… it’s really been since May that I wrote my last post. Hmmmm…. Well, there goes another goal for the year that I’ll miss! Although I must say, I actually have a good reason behind all this. Since my last post it’s been non-stop crazy… whether we are getting ready for graduation or preparing for college, this weekend is the first time I really feel like I have been able to sit back and relax.

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View from her dorm room!

Where has the time gone? First we had high school graduation and all the stuff that goes along with it. Except this time, with my new found sewing skills… I decided to make laundry bags and book bags and towel wraps for Kiyomi and her friends for college. It was a lot of fun, don’t get me wrong – but also a lot of work with defined dates everything had to be done by! The best part of all this was the time spent with friends while sewing. It was a learning experience, but one filled with laughter, great conversation and, of course, good food! The end result was I learned a lot and had some nice hand made gifts for some wonderful kids.

The college preparation experience entailed finding the perfect comfortor set (which took many, many weeks), the rain boots we promised her if she decided to go to Eugene… and all sorts of required dorm decorations, clothes, etc. We atttended orientation… or IntroDucktion as they call it at the University of Oregon… a great experience, but really brought home how much closer we were getting to her leaving… and then over the summer as her friends were leaving (or preparing for leaving) for school – each day and night became “the last XXX…” get together. So we saw her less than any other time of her life. I think I started missing her  the day she graduated.

img_6043All this to get to this weekend. We drove up on Tuesday and moved her into her dorm room on Wednesday. The move-in process was more work than I thought it would be… it wasn’t bad, just took a lot out of me. Times like this always remind me of all the crap I have. The pain, the digestive issues, the mental bullshit… it all just hits me at once. I go into these events thinking… “I got this!!” and halfway through my pain starts rearing its ugly head. I told my husband my body was basically saying, “what the hell do you think YOU’RE doing??”… and then proceeded to remind me whose boss – and apparently it’s not my desire to get shit done that’s boss. Although I did fight it for many hours before finally giving in.

We had lunch on Thursday, she jumped out of the car and Ray and I drove over to the coast. We are staying in the most awesome hotel (the Fireside Motel in Yachats). We have an oceanfront room (something we have never done before) and have just stayed in the room all day watching the waves or listening to the waves while we read/ write. It’s a little slice of heaven. I had no idea how exhausted I was until we got here and sat down to watch the sunset. We had all these plans to sightsee… and then… we both decided to just do nothing. We have gone out for some yummy dinners – but stayed in our room and just had snacks during the day. I am having the time of my life!

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View from our room!

What have I learned? Okay i didn’t “learn” this… I was reminded (very loudly) to listen to my body. In times like this, how about if I don’t self sabotage and eat all bad shit… treat my body with respect. I feel like I was on a mission to spiral down in anticipation of letting Kiyomi go. Stupid.

It’s a privilege to be healthy enough to travel to this place. We drove up to our room and walked the 15 feet from the car through our room to the outside deck. The first thought that came to mind was… “This place is perfect for my mom!!”, but she isn’t feeling well enough to travel like this anymore. I need to be on a mission to feel good! I’m on my way… this place we are staying at, the sound of the ocean, surrounded by this beauty – it’s time to move to the next phase in our lives. Healthy is a good place to be and it’s my new goal!! I should go for a walk on the beach now… hmmmmm… maybe in an hour. One step at a time. :)

Thanks for stopping by!

Tamiko

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Be Blessed… Accepting Your Limitations

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

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

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

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

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

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

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

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

Gently hugz…

Tamiko

 

And the Acting Award Goes To…. YOU! Yes, You with the Chronic Pain!!

These days I feel like I should be going for some kind of acting award. I don’t compare myself to those true to the art, but I certainly feel like I am “on” most of my waking hours. You know what I mean. If you have a chronic illness, you know exactly what I mean. Let’s see… when someone says to you, “How are you doing?”, what’s your response? Me? Well, there’s always the standard response:

“I‘m doing alright...” or I may say”I feel okay…” or

I’m fine…” or sometimes I’ll say

Theatre-stage-curtains-an-001I’ll be alright…” or… or… the list goes on. All of which translates to… “I feel like crap, but I live to get through another day.“.  I depress even myself when someone asks me the question. And, trust me, I’m not saying I don’t want folks to ask how I’m doing, it’s just I never know what to say. Honesty is not the best policy in this case. I don’t really think people should have to hear my truth. In addition, I don’t want to say out loud multiple times a day that I feel like crap. I imagine it would only make me feel worse mentally. Which leads me back to my original statement. I think I am pretty  good at acting. Most of us don’t want the whole world to know how much pain we are in or even that we are in pain at all. To get through the day, we have to put on a happy face so folk see us as functioning people and not just people with pain or disabilities. I don’t want to be the one that people look at and feel sorry for. I want to be the one that is looked at as strong and responsible, caring and able.

Sometimes I think I am so good at this acting stuff, that I convince even myself nothing’s wrong… I can literally act myself into thinking there is nothing wrong with me. Until, of course, I try to live without paying attention to what my body/ mind are telling me. Those are the days that reality slaps me in the face, basically saying, “WAKE UP! Stop just thinking about right now”. I feel like I have to go through the acceptance process of all my medical conditions at least once or twice a week. I know what the diagnosis is (trust me it’s difficult not to know), but when you act like your are completely fine… you act like you are completely fine. If I acted like I was fine while also managing all my medical conditions better, I’d actually be almost fine!

So! What has happened since the last time I blogged?

Damn. Damn… DAMN! I have had tests, more MRI’s, CAT scans, many appts… I did the Prednisone thing. This was the first recommendation to see if it would alleviate the pressure/ pain in my neck (reduces the inflammation). That actually really helped the pain for a few days. I was like a new person, literally tons of focus and energy. It was crazy how good I felt… for a FEW days. Awesome, very much like when I had a epidural while in labor with my son, which literally worked for ONE contraction. There really is nothing worse than feeling the awesomeness of no pain… when you should be in a lot of pain. Only to have that awesome feeling snapped right out of your reach in an instant. So! The Prednisone worked for a few days and then slowly stopped working, but I did end up with the bonus of more pounds on my body. JUST WHAT I NEEDED! yay… (she said super quietly with a lot of sarcasm…)

I had many discussions with the spine surgeon and two separate neurologists and have come to the conclusion that surgery is definitely in my future. With that in mind, I needed a solution for this tremor. None of us want my head to be shaking just out of surgery… that would seriously dampen the entire post-surgical bliss that I’m looking forward to. So! I started a new med. I had a handful to choose from and I made a decision and tried the only one that seemed like it might work with the least amount of side effects (or cause me to have to change my antidepressant)… Well, again, it was good… at first. And then… the side effects kicked in. The kick was a big one. My depression tanked. Tanked as in I fell into that big f’d up black hole. You know, the one that has no bottom and there’s no light at the top to give me hope. It took me a bit to see what was going on. By the time I realized what was happening, I was in too deep. That feeling of hopelessness and despair completely overwhelmed me. I started to back off the meds and ultimately decided I would stop completely. The thoughts going through my head are not worth the benefit of the relief from the tremor. Which sadly, the med did stop the tremor… It’s the choice of bad or deep black hole I’ll take bad any day. That is the end of meds to address my tremor (for now).

So for the last few weeks I’ve been a mess. Working has been like walking through wet cement for hours. (I’m full of analogies today) Attempting to focus with this mental state and my pain levels going through the roof has not been fun. But! I made it through. Today was my first day off the meds and I believe in a couple of weeks I’ll feel much better.

In the meantime, I prepare for my surgery. The mental and physical preparation will take a while for me.

I know God is on my side. With all this stuff standing in front and on top of me, I am blessed with the most wonderful family and friends who stand beside me and on many days who hold me up. I have a job that allows me to work from home, which in turn makes me feel like I am contributing and adding value both at work and at home. I have a plan to address the neck pain/ weakness in my arms and legs. The future is not grey and bleak, it is in fact looking okay. I may be in pain every day and I may suffer from severe depression from time to time, but I am blessed. I do not take the great things in my life for granted.

DSC_0353We just celebrated my daughter’s 16th bday. A celebration that would not have been a success without the help from those closest to me. From the hand-made decorations, to the made from scratch awesome tie dye yummy cake and caterpillar cupcakes, to the candy leis to the cotton candy machine to the best food in the world… this celebration was one to remember… and in less than two months, my son graduates from college. You were all with me when he graduated from high school! Every day is a blessing.

40,000+ visits later, my blog is still going strong because of the support from all of you. I say it again. I am blessed. Thank you for taking the time to read this and leaving your comments and sharing your personal experiences with me. It means a lot to me.

You all win the award for best acting! You do it every day… all day long. It’s not a good or bad thing, it’s just what we do.

Gentle hugz!

Tamiko

Fibromyalgia, Chronic Pain, Depression, ADHD…. None of this Defines You

New year, new theme for my blog… and I am saying good riddance to 2010!! It has been one hell of a year! I am happy to see this one go, I must say. 2010 was a tough year and I am ready to move forward and start strong with 2011.

What do you remember most about 2010? This was a painful year for me… both physical and emotional. I felt the pain of fibromyalgia and the pain of losing loved ones, the pain of walking away from my house after 10 years, the emotional upheaval of changing companies after 20+ years…

It was also a year of celebration… my son turned 18, he graduated from high school and started college. My daughter is in middle school and is excelling in her academics and in soccer. They are both maturing and growing up and I am realizing that they are so independent. I am also seeing what traits they have taken from my husband and myself and it’s awesome and difficult at the same time to see. You always want only the best traits to be passed on, right? You know that’s not the way it always goes… you just pray that your children will listen and learn from your experiences. If not, they will learn on their own as you did yourself. I honestly get this, it hurts my heart to see it happening though. Many of you out there know what I am talking about. You are going through the same thing with your children.

As we enter 2011, my family just completed our annual project.

  • What are your 10 most memorable moments of 2010?
  • What are your 10 goals for 2011?

We take those and write them down and scrapbook them on a piece of 12×12 paper, frame them and put them up on the wall for the year. I will share mine (truth be told, mine is the only one that is still “almost” complete”), as I was saying, I will share mine with all of you when I finish it.

I highly recommend you sit down with your family and do something like this. If anything, it’s a great conversation.

I wanted to make sure I ended the year by saying HAPPY NEW YEAR!!  to all of you… you have all been fantastic supporters in my life.

Most important, if you take anything from my blog, take this… Fibromyalgia, chronic pain, depression, ADHD…. none of this defines you. You are defined by the values and beliefs and all the inner beauty inside you. Your pain is real. Don’t ever let anyone tell you otherwise.

You deserve an awesome 2011. I’m praying you have one!! Thanks for stopping by and I hope you come back in 2011.

Stay cool.

Tamiko

When the Anger & Frustration Get The Best of You, What Do You Do? Choose Calm…

I am counting down the days… less than two weeks away until my son graduates from high school. While there is a lot to celebrate, I feel like I am seriously being tested. Mentally and physically…

This is one of those “how much can you take?” tests. All I’m saying is…. REALLY???? Right now???? First of all, I am not complaining. Okay. I’m complaining a little bit. So, as you read this, you must want to know what I am going on about. Well, I’ll tell you.

Work…. on top of Life…. on top of … Work … on top of Life… on top of … well you get it.

It is exhausting.

When the anger and the frustration get the best of you, what do you do? It’s interesting, either it’s age or all of the training I have received in the last couple years, I feel like I am a lot more calm now than I have ever been. This is another way for me to keep a flare away. If I lose my temper, I am guaranteed a flare within 24 hours. So, honestly, it’s a choice I make. How about you?

How about your surroundings? Do you notice people around you are getting mad a lot quicker? It seems to me people also get really mad at the small stuff. It’s crazy to me. I just don’t get it. It’s such a waste of energy. I guess, for me, I have so little energy to start with I see no reason to waste it on the small shit. Maybe if people were in pain, they would feel the same way. It’s an interesting way to learn such a profound lesson, but that’s how I learned! He said/she said… why do YOU care what people think of you? What is really important is what YOU think of you. Think about what makes you angry and figure out WHY. Is it worth spending the little energy you have on that anger? Or would you rather do something else with that energy… like LAUGH?

We are surrounded. There’s no doubt about it. Road rage. The daily news. TV shows. Movies. Rude people. Rude people in general. I am amazed at how rude people are these days. Rude people raising rude children…. and so on and so on…

So! Don’t stand for it. Smile. Don’t let the small shit get to you. Don’t get angry, get over it! Treat people with respect… ya hear me? Let’s use our energy for positivity!! Stand up and shout about it!

If you feel like you are about to lose it… close your eyes, breeeeeeeaaaaathe, count to ten.

If you want to scream at your boss, your husband, a rude person, your doctor …. take a deep breath, close your eyes, breeeeeeeaaaaathe, count to ten.

So… I think you get my point. The person who is going to suffer the most at the end of the day is the fibromite in the anger game.

Choose calm. Thanks for checking my blog out. Please leave a comment.

Stay cool – and chillax!!

PS. It’s funny how I always start off with one train of thought… and I always seem to end up somewhere else. Oh well, I did say I had ADHD, right? LOL!

I Am Enlightened… My Son is Graduating! I Can Do This, RIGHT?

Being a parent is so easy… When I was pregnant, I read all the books, I took in all the advice, I did EVERYTHING right… I was soooo prepared!! Man, I am the perfect parent!! Just call me and I will tell you all the answers. I am the leading advisor on all parenting issues.

Yeah, right!!! Ask my kids, they will tell you the real truth. My son is graduating from high school in a couple weeks and last night we had our “what are your plans for the summer conversation”. I am enlightened. I shouldn’t really call it a conversation. It was more of a one-way talk/defensive-response. I mean, I’m under no crazy assumptions here, I know I am not, let’s just say your Claire Huxtable/Mrs. Brady type of momma … but on the other hand I am also not your get-ready-for-primetime-Jerry-Springer-show momma either. I am smoothly on the side of “living-with-fibromyalgia-so-can’t-do-it-all-so-I-do-my-best-and-it’s-not-always-the-most” kind of mom. I am not sewing Halloween costumes or baking cookies or to be frank, doing laundry or making dinner or to really put it out there… cleaning the house or driving the children around. Are you still with me? Or did y’all quickly leave my post in disgust… that’s me, take me or leave me… I work full-time+, generally about 50-60 hours a week as a, let’s see my title this week is “Sales Operations Analyst”. I have two managers … I report to a Sr. Director of Global Operations and the VP of Sales at a hugemongous (yes I made that word up… and I like it!) corporation that is taking over the world one company at a time. I have worked full time since I was about 16. That’s 25+ years working full time, I’m just slightly tired sometimes. Until FMS hit me, I was definitely that type A personality. Now I am a type “a” personality… just give me the little “a”.

So, having said all that (remember… easily distracted)… I am enlightened. This is a difficult time for me. I want to stop the clock and just say “Wait a minute. I just want some you and me time to just chill. I know you are leaving, but I want to just hold on to you a little bit longer…” He, on the other hand, is ready to GO. I remember that time. I could not wait to get out of the house. I wanted to go, get out and not look back. This is a difficult conversation. Any words said between parent and child can be pretty hurtful.

Us. “We want you to get a job. We understand you are making money on your own, but we also want you to get some experience, have some structure, learn how to take direction within a management team, etc.”

Him: “ummmm, whatever. I don’t agree. I’d rather just hang out with my friends.

Us. “We know you are going out with your friends, we just need to say this so it’s been said… please make right choices about getting in the car with people who are driving under the influence”

Him: “I choose smart friends, why would they do that? I don’t appreciate you assuming they would do that.”

Us: “We just want to tell you our expectations for when you go to college, just on our mind…”

Him: “Why? Can’t you just tell me on our way when you drop me off in like three months, this makes no sense… I mean, why do you need to tell me now?”

Us: “You are graduating from school, you have a lot more time to contribute to the house, both inside and out. We would appreciate it if you would help out. These are not chores, these are things that need to be done, that we may ask you to do. You don’t have any chores that you do, so would ask that you help out a lot more until you leave.” (An alternative was given to pay instead of helping out…)

Him: “I’d rather pay than help.”

Anyway, I’m sure this is not drastically different than a lot of kids, but honestly. Selfishly, and I mean this, selfishly… life at work is so hard, why does life with him have to be so hard? He is so defensive and argumentative about everything that he disagrees with. He cannot discuss calmly, he just goes for the jugular. Aw well…

He was honest. He told us he’d rather spend his summers staying at the college than coming home… He said it’d be more fun staying at the beach with friends hangin’ out than coming home and getting nagged. Wow. That was enlightening. This kid has zero chores. I made a mistake somewhere not giving him chores and sticking to my guns on that one. Now any chore he is asked to do is an issue. On the other hand, this is also not so hard to understand. I would have felt the same way at his age. It’s is just hard to hear.

I am enlightened. Since he was a small child, he has been so stubborn. Very hard headed… to the point that we took him to counseling. I think I get it. Now. Just this moment. He is very serious about his stuff. Since he was a small child all the counselors have always said, “take away what’s important, whether that’s material or something like privacy, ie. remove the door from his room”. We have done that all his life. Now he pretty much hates us for taking that action. He KNOWs his stuff will get taken away, yet he will not give a shit. At the end of the day, he is pissed at us for all the shit we have taken away in his life. Still pissed. He remembers everything. So, why did he push it to the extreme? Why did we let things go so far? Life lessons. There is no damn “this is what you should do in this situation” reference book for each individual child.

In our children and godchild’s lifetimes, we have done our best as parents. We have made mistakes. We will continue to make mistakes. That is how life works. I know this, I accept this. It is painful for everyone involved. This is how we all grow.

I do know, my miracle child is smart, he is a genius to me, he is going to go exceedingly far in life. I am so proud of him. I love him. I trust he will make the right choices. That doesn’t mean I won’t worry, that’s just part of our DNA as parents, right?

Now begins the countdown… Lord have mercy. I can do this. He is ready. I will be too. He is a strong boy and when he walks out that door, he will be a b-b-b-….MAN! He’s been prepared. It takes a village and those he has been around the last 17 years have all given him the tools he has needed to become who he is. It’s up to him to take all of that and take the next step.

Y’all pray for me and give me your support… I already miss him!

Stay cool!