Ten words…
Fibromyalgia
invisible
inconsistent
relentless
insomniac
individual
frustrating
disabling
chronic
humbling
acceptance.
fibromyalgia
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!!!
I Never Believed This Was Possible – But Now I Do… Losing Empathy
I never believed it was possible to lose the ability to feel empathetic. Over the course of the last ten years, I have slowly started to feel less and less empathy for people’s unfortunate situations.
I’m not sure if this is normal when you become older, or if this is because I have lost so many people that are close to me, or if this is because of the chronic pain I have endured over the last five years… probably a combination of all of the above.
Not a situation I am proud of. I don’t think it’s the lack of empathy. It’s more of a numbness I feel. I have a hard time taking in anymore sadness. I understand why people have a hard time going to hospitals, which I didn’t really understand before. I don’t have any desire to be in a hospital… EVER. Whether for good or bad. I have no desire to answer the phone, I was bad before, but now? Please, I’d rather just not … ever … answer … the phone. So many unfortunate conversations have occurred over the phone. All those updates and urgent calls in the middle of the night, jumping in the car with 1/2 a bag packed and driving like a bat out of hell to someone’s ICU. It’s not fun.
Please don’t get me wrong. I would not take any of this time back. I would not do anything differently. The moments I had with all of my loved ones was very special to me and I still cherish it. It’s just, there has been a lot of death and I am numb.
I feel guilty for not wanting to go to the hospital when people are ill. This used to not even be something I would think about. Now? It’s very difficult for me to imagine getting out of the car and going in the elevator and walking through the ICU and hearing the beeps and sounds of the machines and the sickness.
Wow…. this is really some depressing shit. I am sorry.
I have been in a flare, the pain has not been fun. With pain ultimately comes depression and I have been battling these two for the past couple months like a dragon slayer and I gotta tell you. It’s been one hell of a battle! Every time I see the sunshine, it feels like that shit comes right back … consistency has not been working with me. You all know how that goes. Right now it seems for every one or two good days, I’m getting 3 or 4 bad days. Keeping my head up is not easy, but I’m praying and working at it as hard as I can manage!
Tomorrow I’ll be more positive, I promise! Thanks for reading… stay cool!
Of All the Pain I Endure… Losing A Loved One… Remembering My Friend Steve…
Of all the pain I endure… the pain that comes from the loss of a loved one outweighs that of any physical pain by any stretch of the imagination. This is yet another piece of my heart that has broken off and flown with outstretched wings around my beautiful friend as he makes his way to heaven.
He may have left us before his time, but I know God has a plan and I have to trust this is best for him. I know he had a strong belief in God and was at peace when he left this physical world. It will just take me some time to get used to it.
I have lost so many people in the last few years, I am almost numb to the news … it’s almost like I am in another place. I hear it, but I don’t. I have to process this. I have to go through this grieving process… again. I am no different from anyone else, everyone loses family and friends.
I will take this time to remember my friend… and I appreciate all of you allowing me to share this with you. He was a special person to me. My friend for the last 24 years…
STEVEN ANDREZ MARTIN
“Big Steve”
FUNK-A-DELIC!
Maybe he didn’t like that name, Big Steve.
Everyone knew him by that… he lived his whole life trying to get smaller.
This man could make you smile just by entering a room,
make you laugh from across the building,
could never listen to a song without whistling or singing.
He lived his life on his own terms… “FUCK IT”
he’d say
about anything he didn’t agree with, I can hear him now.
“SHEE-IT”
he’d say
followed by “oh, excuse me”
with that BIG GRIN on his face and that not so subtle laugh.
Because he knew he shouldn’t be cussing like that…
I miss him already.
This man would give his last dollar to you,
but he’d let you know!
And then he’d laugh… and ask you for a smoke…
He lived life on his own terms.
He paid no attention to his surroundings, and don’t tell him about it
he’ll just get LOUDER on you!
“FUCK these people” he’d say
then I’d remind him about the children.
“Sorry, sorry, sorry….”
and we’d just laugh and laugh and laugh!!
Free Spirit
he loved the beach, needed to be by the ocean.
He loved to drive.
San Jose in the morning,
Oaktown in the afternoon,
LA at night.
The man could drive.
Sun Microsystems.
The lunches, the parties, the people.
Steve was the man!
TAS
How can anyone forget…
The Van, Oh Lord, The death VAN!!
Cafe Bombay
Noodles in Newark, Thai in Newark, Japanese food in Newark
CHIPS Night Club
The fashion shows
Steve’s Music Video at the Brass Rail
He was a great friend.
TOGETHER
Steve and I
SHARED
Lakers 1st Repeat
Venice Beach Vacations
dancing, so much dancing
concerts
many, many, many meals
The Slim Down.
We tried every diet together,
Nutrisystems, Jenny Craig, WW, eDiet.
We did the work out thing together,
the gyms, the walks, the rides, the swims.
I will miss him dearly.
His uplifting talks.
His laughter.
Even his cussing.
Rest in Peace.
Chicken and rice, my friend!
I love you!
Thanks for reading! Stay cool….. and please… leave your comments and feel free to share your own memories of Steve or a loved one with me, I’d love to hear about it!
Tamiko
I Went to the Beach Today…
I WENT TO THE BEACH TODAY AND… now
pain pulsates through my body
i suffer for having to walk at all today
my legs scream in pain
feet tired
my chest is bruised on the inside
arms and shoulders
exhausted
neck
my neck
i wish
my neck
was
not
so
tense
so
i
could
relax
but that is not the case
and
to top off this day
i have a headache and
my heart is heavy on this day.
WHILE AT THE BEACH… I DID
have a nice time with my very close friends
we ate great food, good conversation
wonderful weather
i
did
relax.
i
should
have
stayed
at
the
beach!
What’s Your “In Your Head” Morning CheckList? From One Fibromite to Another…
… i am running about to go up some stairs … anndddd I’m awake! well, my brain is slowly adjusting to the morning fogginess attempting to determine dream vs. reality. ummmm running? definitely dream! as i slowly go through my morning checklist in my head…
- can i move my legs? let’s see… i can already feel that numbing-tingling-i’m-gonna-go-limp-on-you feeling in my knees and i haven’t even gotten out of bed… great. it would be one thing if i had maybe been on a 2-hour bike ride first, but this is ridiculous… oh yeah, it was all that running i just did. the top of my legs, right on that bone area… as long as you don’t… well let’s just say touch it… we are all good! maybe i should just invest in shin guards… soccer fever is in the air, right? hey, my thighs? alllll goood!!
- how about my feet? toes are good – check! bottom of my feet are good, yes! i hate that pins and needles or i should say spikes and knives that go on for about 1-3 minutes that feels like 15 minutes that make me want to scream in pain! AHHHHHHHH!!! but i can’t complain about that at this moment… woohoo!! tops of my feet were feeling a bit of “the jolly green giant stepped on me” pain, but i can deal with that.
- i’d love to skip that middle of the body – ’cause … well … it’s just a bit massive so in my mind it’s just best sometimes to forget about it. (“body image mom!” i can hear my daughter saying because i don’t like to say negative things around her… i don’t want her growing up constantly obsessing about her body image. shit. i hate when stuff comes back on me like this.) okay. anyway, my tummy is upset as it always is these days when i wake up… when i am awake… pretty much all the time… and i don’t end up with a beautiful bouncing baby 9 months later either!! let’s be very clear — i don’t want a beautiful bouncing baby at this time in my life, but for feeling sick like this? you’d think it would be the end result! i keep thinking i should break out my maternity clothes because my stomach is all bloaty and upset all the time, then i remember, nope just another side effect. damn. (and i thought i had an excuse to go clothes shopping!)
- arms…. oh my arms. yup! let’s just say they definitely are not going to be doing any heavy lifting today. light lifting is out as well. driving? not today either. wrists? high on the pain level scale… and shoulders? high, very high.
- neck? well… unfortunately that is not a good place for me. neck and shoulders is where i carry my stress. i have to constantly remind myself… r-e-l-a-x! i do a lot of the deep breathing exercises and relax my neck and shoulders during that time because i constantly forget to relax there… pain is high. i will get up and do my exercises and hopefully that will help.
- head? i have a headache this morning…
guess what day today is. just guess. no really. because i am in bed saying to myself it’s definitely a “cane” day and i’m not talking sugar cane… it’s definitely a day to take a long nap and rest. although i will try to convince my husband to take me to the dog park, my favorite place to just get away and relax. it is, of course, saturday. because that would be my free day and it has become my “down” day. literally. after working 5 days and wanting to have a fun day, i always end up with this “down” day. which actually isn’t the worst thing that could happen… i just don’t like things forced on me.
this week has actually been great, we’ve had friends from out-of-town visiting to make for better days and last night we had a great night out. tomorrow we will go to the beach. it’s not the usual week. no complaining from this girl!!
what’s your usual “in your head” morning checklist?
wishing you all a pain-free week-end! thanks for stopping by… stay cool!
tamiko
my foggy brain 