Day 10: Dear 16-year old me…

Hey girl,

You have experienced a lot in your first 16 years. I am writing this letter to you to share with you how I am feeling about where you are in your life and I also want to spread a little knowledge from my life experiences. Knowing you, it will take some time to digest any advice to determine whether or not it’s worth your while to pay attention to it. I understand, all I ask is that you read this letter through to the end and keep an open mind.

First, let me tell you how I see you as a person, and honestly, how I believe the world sees you. It’s important, for me, that you hear this from me as one of my hopes for you is that you never question these things. I get that, at your age, it’s difficult to deal with all the pressures socially, educationally and emotionally. Just know that you are loved, most importantly.

  • You are beautiful. Don’t let anyone tell you otherwise.
  • You are strong… you are so strong. Don’t let this strength get in the way. Don’t confuse strength with pride. Strength will hold you up (with God’s help) in difficult and challenging times. Pride will pull you down if you let it get in the way. It’s okay to be wrong, and it’s even better if you can admit it (out loud).
  • You are giving and loyal. These are awesome attributes and will bring wonderful people into your life. Save that loyalty for those that treat you with the respect and love that you deserve.
  • You are smart. You are smart. I’ll say it again… You. Are. Smart. Give yourself a break. You do not have to know everything. It’s okay to ask for help, it will make your life easier if you learn how to ask for help now vs. when you are older. People want to help you, you just have to let them in.
  • Spontaneity is a wonderful thing… keep it up!
  • You are intuitive, use that to help yourself and others. Use that when making choices that may change the course of your life… those choices that will make an impact in just one moment.

Below are some of the things, looking back in my life that I’ve learned, that I hope will help you grow as a person…

  • Your life is precious and it’s a gift. It can be taken away at any moment. Push all the negative people, images, stuff away and close the door on it. No need to let that back in your life. If someone or something is not bringing joy or uplifting your spirit or teaching you something that will make you a better person… remove them or it from your life. It may not be easy, but you will feel better without that negativity.
  • Give people a chance. They will make mistakes and there will be times when you will get hurt, but your true friends will always be there for and with you through thick and thin. It’s not the quantity of friends in your life, it’s definitely the quality. I truly believe less is more when it comes to friends. Invest your time in friendships that don’t involve manipulation, lies, judgement, insecurity…
  • Take the time to enjoy life. If you are always worrying or wishing for what you want to happen next, you are not able to enjoy what you have now… and I believe you are blessed. You have a lot to be thankful for.
  • There’s a time and a place for everything in your life. There’s a time to work, a time to learn, a time to play, a time to rest…  keep a balance so at the end of each day, you feel good about yourself.
  • Watch the world around you and take the good from what you see. Leave judgement to God. Everybody is human, makes mistakes, has a bad day… or just maybe needs a friend to uplift them. You can do that, do your best to uplift others, not judge, criticize, embarrass… Treat every person you meet with respect and dignity.
  • Love yourself and others will love you. Treat yourself kind.

The reason why you feel down and you have a difficult time in school is not because you are crazy or because you are stupid or because you can’t hack it… you have Depression and ADD. It’s not the end of the world, you can manage your mental health so that you can be successful. Educate yourself.

You only get one life, make wise choices so you will live a long, healthy, happy and content life. Your friendships and relationships with family will support you through the good and the difficult. I hope and pray you will marry a man who you will be happy with every day. Someone who you can share anything and everything with and build a forever live with.

I have learned many lessons the hard way. The most difficult has been believing my body would always be there, no matter how I treated it. This, I can tell you, is not true. I am a middle-aged woman with the body of a 90-year old. I have Fibromyalgia now and I believe one of the main reasons is because I didn’t keep a balance in my younger years. I worked and worked and worked until my body said “NO MORE!”. What I worked and worked for, at the end of the day, was not worth what I am dealing with now. I could have spent more time with my family, I could have spent more time reading a book and relaxing, I could have traveled more… there’s so many “I could have’s”. I hope you take this to heart and make different choices in your life.

Most important… have faith. With God on your side, you can do no better!

God Bless you.

Day 7: TUI… Talking Under the Influence

Do you TUI? I was thinking in the car today about the effect pain has on my communication. I realized I TUI, “Talk Under the Influence” and that’s not really a good thing. I’m talking about under the influence of PAIN. Sometimes it’s mental pain, but most of the time it’s physical. I get that there are not a lot of moments when I am not in some kind of pain. I try to manage my way through and be the best person I can, but being my “best” does not always result in … well… even a “decent” conversation by any standard.

So what happens? Most the time I fake my way through conversations, I have talked about that before. That works in most situations. Where it doesn’t work is in my relationship with my family. I generally muddle through and after think to myself, “Why did I say that?” or better still, “What did I just say?”. These moments are not fun for anyone. Reacting in a negative way to a simple question or blowing up over nothing… a better word to use would be – OVER reacting. In this situation everyone is frustrated. My kids look at me like I’m an alien from another planet, while I’m wondering (in the moment) “What the HELL is going on??”. I know I’m under the influence when the conversation goes:

Me: Please go XYZ

Child: ok

Me (5 minutes, okay maybe 2 minutes later): Why haven’t you XYZ?

Child: Chillax mom

Me: WHAT? What did you say to me? Why are you talking to me like that? Why haven’t you done what I told you to? When are you going to do it? Screw it. You’re grounded!

Child: Why do you always get so mad at me? I didn’t even do anything!

Me: … well words can’t really explain how I feel at that moment, mostly I think my heads going to pop off my neck at that point… until about 10 minutes later when I’m sitting there, alone. Wondering… wondering what the hell just happened.

Talking Under the Influence can really hit at anytime. I don’t usually know I’m doing it. The most telling factor is when I’m mid-sentence or mid-thought and I forget what I’m saying or even what the conversation is about. I can’t figure out the next word. Foggy brain in the purest form.

I get that relationships are challenging under normal circumstances. Add in a chronic illness, both pain and depression, and it’s not really a recipe for success. It takes patience and hard work. Work requires energy, which most of the time is non-existent (I’m talking about never having energy… work? That’s always there!). A pretty dismal picture when you think about it. I’m sure I’m not the only one who wants to give up at times. You have to really play the entire movie out at this point… so…. you throw in the towel, what do you have left? In my case, I’d lose my support system… but most importantly I’d lose the love of my life. Is it possible to start over or maybe even… refresh a relationship? To give up, to me, means that I have let this shit win. I won’t allow that. I realize most relationships end over issues with communication. I know this is always going to be a challenge, given our circumstances… the bottom line is I have a choice. I have a choice whether or not to give up and walk away (albeit slowly walking with a cane) or to fight for what is important and totally and completely worth saving. Don’t give in to those bad moments, step away and start over and try again. I have to keep the faith and fight (crazy expression… fight, that’s what got me into this situation to begin with, isn’t it? :).

It’s challenging to live life within the rules, dreams and goals I have for myself, when this outside shit keeps wanting to take over. I can have a great day, get out and about and have a fun joy-filled day… almost always, the following few days are filled with pain reminding me what I have… as if I’d forget. It’s most difficult to keep my head up during those days. I get angry and frustrated and it certainly doesn’t motivate me to keep going. I can spiral down that slide to the bottom of the well, far easier than I can climb myself out of it. It’s non-nonsensical. It’s important to keep perspective. What do I have in my life? I have family and friends who love me, I have the best kids in the world (I really do) and a wonderful husband. Things are tough and will be tough, once again it’s how you get through this shit that makes the difference.

I may TUI, but if the people around me realize what I’m working with, I just keep praying they’ll continue to love and support me. Keep in mind, if you can look back and realize the moments when you TUI, it may help you understand where things may have gone wrong in a conversation. Admitting that out loud to the people who you have had those conversations with… well, that’s another story! :)

Best of luck. Thanks for reading!

Gentle hugz.

Tamiko

GUEST BLOG: Dear Wife and Fibromites… a letter from my husband

Hi everyone… my husband asked me if he could guest blog tonight. It came as quite a surprise as he’s been in the bed for the last few days. I would have thought the last thing he would want to do is be a guest on my blog. I share this with all of you and hope you have as wonderful a husband as I do! Please share this with your family and post your comments, we’d love to hear from you. – Tamiko

Dear Wife and Fibromites,

Thank you for letting me guest blog! So here I am, sitting in this empty bedroom, on my third day of pain. I have a pinched nerve that’s radiating down my neck to my back down my arm. I went to urgent care Wednesday morning in the most excruciating pain I have ever been in, (in my life). Once I got home, I barely made it up the stairs, then to top it off, I sat on the side of the bed in the most debilitating pain while I waited 2-2.5 hours for the Naproxen and Hydrocodone to kick in. Longest 2.5 hours ever! Now understand, I have a high tolerance for pain (so I thought) you see I’ve broken bones, torn cartilage, I even once played soccer for 2 weeks with an unknown broken foot!

So with that said, I thought I had a high tolerance. This pain was unfamiliar to my body, but very familiar to my brain. Hmm, where have I seen this familiarity? That’s right my wife! There have been many times when my wife could not make it up the stairs, could not move a muscle in her body without a grimace, and many times NOTHING would help. Holy shit, I am getting a “taste” of what she goes through as well as anyone else with that shitty ailment Fibromyalgia. Upset stomach because of the meds I HAVE to take in order for the pain to subside, have not eaten in 3 days, super sensitive to smell, constipation and nausea (TMI), but a big part of how I’m feeling. I have been waking up at night every 2 hours, awake for 1 hour, then sleep again for 2 hours. Just sickening! And the kicker is, I see zero light at the end of the tunnel. I am a walking zombie in pain right about now.

So back to my wonderful wife… all I can say is if you have a wife, spouse, partner, friend or family member with any type of chronic pain, I just realized you might never ever understand how or what they feel. And yes, this could be a boneheaded statement, because if your loved one tells you how they feel, you theoretically should understand. But you won’t, take it from me it’s been many years for me being on the non-pain side. But this little touch of pain I am experiencing right about now is letting me know what it really feels like (only if it’s just a few days) I actually feel like the idiot, selfish, self-centered husband, who supports my his wife, but was not really “getting it”. I have been in pain for 3 straight days (laughable to her 10 years) But I do understand just that much more. I always tell her how “I wish I could just take some of her pain away and have it go into me” I am re-thinking that right about now. This pain shit is no joke! My sensitivity level has just risen, my advocacy level has just risen, and my awareness level has just risen. I will listen more and I will help more, I will cook better foods for her, I will read more and I will educate myself more.

In summary, first off I can’t blog anywhere near how my wife can blog, but I thought I would just guest blog and share my great and terrible experience. Basically you think you know, but you don’t know. It is humbling and revealing all at the same time. If you are like me and have a wife in this life battle, hopefully you can just take a little from this blog even if it’s just to open your eyes that much more. So what needs to happen at this point is us non-fibromites need to stick together as well. We are the support system!

Thanks for listening.

Ray Arbuckle (husband and advocate of Tamiko Arbuckle)

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!

Who is Your Lighthouse? Every Fibromite Needs At Least One…

sometimes life is not what it seems. these days, every day feels that way to me. i am not working right now due to my medical situation, my blogger friends will know without a doubt why… but i feel guilty. i can’t quite work out my emotions. this is not a vacation, this is not time to work, this is time to heal. wow. time to heal. i say it out loud and i still can’t believe it. if i do things that i believe are healing for me, i still don’t feel right. this is crazy. i am a grown adult. i am lost.

i can remember the moment the words came out of my mouth. “my doctor has taken me off work.” from that moment on, there was no turning back. i was both scared shitless and relieved at the same time. so many questions going through my head, i couldn’t turn the volume down.

  • would i be able to heal?
  • would i have a job to come back to?
  • what does this mean?
  • how is this going to effect my friends at work?
  • what will my children think of me?
  • can i make this change?
  • how will my husband handle yet another burden on his already heavy load?

question after question just kept coming up and before i could answer another question would come up… and then all the forever questions… oh shit what will i do if something happens to my husband? i can’t take care of myself, much less my children… why the hell did this happen to me? why now? why did my friend just pass away without giving me the chance to talk to him just one more time to hear his crazy ass laughter? why can’t i pick and choose when i want to be in pain? why can’t it be obvious that i have a medical condition so people will know i am not okay? (i mean… seriously, i much prefer to look anti-social at parties… that is so much better! [btw, i just told my daughter that sarcasm is bad]  i always end up sitting in one place or better yet even… like today, having to take a nap because the pain was so bad… nice!) i know this is why many of my chronic pain friends do not go out, but that is not the solution. i want to go out and be with friends and family…

warning – i digress here….

i am watching my children, nieces, nephews, and their friends grow up and what a generation we have coming up around us! these. children. amaze. me. their determination, assertiveness, independence… they have it all. they have grown up with so much technology and knowledge compared to what we grew up with. they have access to so much more information at their fingertips… and they access it and use it with ease… we have raised some strong-minded youth. they know what they like, what they want and by the time they can vote … they will not hesitate to make their opinions known. it’s an interesting time. for me personally, sometimes i just want to scream, i get so frustrated trying to raise my children. they know what they want, have so much knowledge, i can’t battle them – don’t have the energy to fight them. most the time i just want to hold them so tight and not let go. i know they will leave me soon and i will only see them when they want to visit. my time with them will be  solely on their terms. their time with me so far has been on my terms. the rest of their life will definitely be on their terms…. how did i get to this topic? hmmmmm…. just typing and this is what came off the top of my head.

and now back to my original post…

as you can see, i am having a very difficult time focusing in one area. i am struggling to wade through this quicksand of emotions. i am trying to journal again. i thought that it would help me “find myself” so to speak. so far not a word on paper in my new pretty journal. zip. nada. nothing. the big zero. “How to Find the Inner You”, “How to Redefine Your Life”, “Where are You?”, “The Map to the Real You”, “The True You”, “This is Your Real Life”, “Your Life Begins Now”, “Life After Chronic Pain”, “Redefining the New You”… etc. all titles of books that would really help me now… if they existed (and they probably do, i just don’t want to pay the price for them, i mean,  after the title, what the hell do I want with them?) i have no patience to read a self-help book… i am just really trying to find a way to get myself to stop! write what i’m feeling down! and listen! and really… is this possible? i have journaled all my life, but for some reason, it really is asking a lot of me. you’ll just have to take my word on this one. (by the way, if you are thinking of writing a book and you were planning on using one of those titles above… ummmmm…. go for it. i’ll just take a one time cut. :) i know God has a path for me already written, i just need to stop! and listen! to Him. i never was very good at listening… my husband can definitely vouch for this. (oh man! did i really just put that in writing?)

so… why the lighthouse image for my blog this week? i’ll tell you why. two beautiful women celebrate their birthdays this week. i look to these women to provide safety in the dark for me and they have no idea how much they save me on a continual basis. one beautiful woman because she is and has been my best friend for the past 20+ years and has been there for me through thick and thin and even though i know i don’t call as much as i should… just knowing if i ever need anything i know she is there.  she gave me the very very best gift of all, my beautiful goddaughter. i would never have made it to this point in my life, if not for her love and strength… i would not be who i am without her in my life. she taught me how to be a professional, how to know and appreciate God, how to be a parent, how to be a girly-girl and without her in my life i would not have been so honored and blessed to know and love her Mother (and yes that is with a capital “M”!)… it would take a lifetime to just say how much she has blessed my life.

the second beautiful woman because through the friendship of our children, i have been blessed with the friendship of this woman. she has given of her heart over and over and over again and always ever so quietly. there is no way i would have survived the last six years without her friendship. she has a calming effect on me the moment i know she is around. her thoughtfulness, sense of humor, no bullshit attitude is so awesome! i look forward to strengthening our friendship with each birthday we celebrate.

they are my lighthouse in the storm that can be my life. dependable, steady… always there. i celebrate them. i hope that all of you have a lighthouse in your life. there are definitely a few other folks who are in this category who i will celebrate in a later blog…

thank you for reading! stay cool… please let me know how you are doing, leave a comment and let me know what’s on your mind.

take care and here’s a gentle hug for all my chronic pain readers.

tamiko

PS. Thank you so much to everyone!! I just passed 3000 hits to my blog this past week… that is too amazing… THANK YOU!!!

Maybe There Are Just Too Many Maybe’s… Making Decisions With A Foggy Brain

Let’s say, for instance, you have to make a life altering decision. How do you go about thinking through this decision? Do you talk to your friends? Do you go in a dark room and think, think, think? Do you sit down and make a list of the pro’s and con’s? Do you talk to your counselor? Do you talk to your significant other? Do you talk to your dog? parents? What do you do?

Let me give you an example. You have the option to make a change that will make a significant difference in your income, your social life, even your daily life and will cause you to go through some pretty major positive and negative stress. You can either make this change OR you can keep  going in the life you have. The life you have is not bad. You make a pretty good income, you work with some of the best people on earth, you have some pretty major stress.

So, what’s the problem? Well, that was just an example. My question still remains. What do you do when you have a problem and you need to think it through? I struggle with this all the time when I have issues. With a foggy brain, when I try to figure things out… well, let’s be honest… I don’t get to the “figuring out” part. I start to do the research, but I have a difficult time reading through the policy jargon. The stuff that used to be so easy for me… this is the shit that I used to read through and help OTHER people understand. Now I’m the one that can’t figure it out. What. Happened. To. Me.

I have my good days when I can be a Lawyer! Of course these are my husband’s worst nightmare days. He should really pray these are the days he doesn’t get into an argument with me… because if I’m feeling good, I’m probably going to really want to use my brain! (God help him!) These are the days that I will willingly work 16 hours to get through as much email and paperwork as possible. I can process stuff very quickly vs. the normal time it takes. Quickly. This is how I used to work in the late 80′s and 90′s and early 2000′s bcp (before chronic pain).

I can remember those days. I used to work 16 hour days… everyday. I used to work 6 days a week… every week. My life was work, work was my life. Hmmmmm, I don’t think I should look back on those days and say “those were the good ‘ol days!”. There were definitely some GREAT days! I had a lot of fun working, I learned a hell of a lot… but I gave up a hell of a lot as well. I am certainly paying the price now. People still expect the same output or I should say, people would still like the same output. I also expect myself to be able to work like that. I still push myself to work those hours. I don’t know how to work an 8 hour day, stop working and then figure out what to do the rest of the time. Well, let’s be real here… after those 8 hours, I’m pretty much useless. BUT, IF I had energy after 8 hours, what would I do? I have no idea. There is so much to do… where would I start?

My problem is… I have so many things I want to do, I am overwhelmed. If I wasn’t working at all, where would I start? Where would I stop? How would I prioritize? The thing is… why think about it at all if there’s no chance at the moment?

So… again, I have this question about how to make this big life altering decision. I have this damn foggy brain. I have all these questions in my head. I am completely overwhelmed. I know there are all these processes you can use to make decisions… and well… I think when it comes down to it… maybe I’m just not ready to make this decision. Maybe I’m afraid. There are just so many Maybe’s.

Maybe. Maybe. Maybe. Maybe. Maybe I’ll figure out what I want to do soon.

But for tonight… I think I’ll go to sleep… and maybe, jussssttttt maybe, when I wake up I’ll have an idea of how to think through this decision!

Y’all stay cool! Thanks for reading…