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Nothing Like Aging… A New Day… A New Diagnosis

aging

Ten years ago, when I was just a youngster… ummmmmmm RIGHT! Well, let’s just say I was younger than I am today. I strongly believed that aging was no big deal. I couldn’t understand why people dreaded getting older, this never-ending search for the fountain of youth. Today… I understand. As I get older, the days are not necessarily getting brighter or lighter or easier or more relaxing or… geez, I’m depressing myself.

Let me help you understand what I am feeling, I’m sure it’s not that foreign to many of you. Over the course of the last decade I have lost family, friends, and bits of myself. My fear that I will lose more family and friends is greater now than ever before. I also fear losing myself. To clarify, losing my ability to do things on my own (not that I do that much on my own these days), but seriously… physically taking care of myself, my sanity, the everyday things that a lot of people take for granted. It’s pretty frightening.

I look back a year ago when I was walking miles daily and then I look at today when I can barely walk to the car. There is a reason for the change… let’s just say that I have been diagnosed with yet another flipping irreversible condition. Cervical Spinal Stenosis. Yes ladies and gentlemen, it’s true, the hits keep coming! I have had two MRI’s in the past few weeks, 3 appointments with a Neurologist and the “what’s next?” question is heavy in the air in my house. Let me just say… a few weeks ago, I did not start my day saying… “I’m going to go in to ask my doctor, YET AGAIN, about the constant pain in my neck or the fact that I’m super weak.” We all know what happens when we do that… the “You have Fibromyalgia” card gets pulled out. I made an appointment with my primary care physician to check my tremor. It’s really been bothering me so I decided to re-confirm the diagnosis and look into treatment. I was quickly referred to the neurologist.

My appointment with the neurologist was one of the best appointments I have had in a long time. We started talking about my tremor and ended up going off into a completely different direction. This doctor spent an hour with me. An hour. That is almost unbelievable to me… and she’s a specialist doctor! I believe that she understood right away that I walked into her office as an informed patient. I knew what medications addressed Essential Tremor and I knew which ones I was willing to try and which ones I wasn’t (based on interactions with what I am already taking). As soon as she started to take a look at me, she did a bunch of strength tests on my arms, wrists, legs, ankles… had me stand up… asked me a ton of questions and did all the tests over again. That’s when she said she wanted me to go in for an MRI. She had read my medical history and noticed I had been diagnosed with Degenerative Disc Disease years ago and wanted to see what my spine looked like today. She wasn’t questioning my Fibromyalgia diagnosis but she felt like something else was going on to cause the weakness in my limbs.

To cut this story short… I went back, she showed me my MRI results and it’s not a great picture. That’s when she asked me to go back for another MRI, which by the way, have I told you how claustrophobic I am? Lord have mercy… I came out of the first one a complete wreck. Barely made it out of the room, walked halfway down the hall with my husband before the tears started rolling. The pain of laying on that damn MRI bed while it vibrated for 30 minutes… and let’s not even talk about the sounds or the fact that I was in a tight space (and I was in the large machine). Anywayyyyyy…. I fully prepared for the second one. I prayed for a full hour before we left the house. I took a little more than the prescribed dose of Ativan to help me relax, closed my eyes and prayed for the hour. You heard me… the HOUR I was in the machine this time. When it was all said and done, God was with me all the way and I made it through much better this time.

CERVICAL-10880

Anxious for my results, I had a call with the neurologist late Friday afternoon and she confirmed that the Degenerative Disc Disease has moved down the rest of my spine. That’s not surprising considering the constant pain. Given that diagnosis, I wasn’t so concerned, I’ve been living with this pain for so long. What I wasn’t really prepared for was her recommendation that I get surgery in my neck to address the Cervical Spinal Stenosis (which she said is also a form of arthritis, also known as bulging discs). I had done a lot of reading and I knew this was one of the potential outcomes. I just refused to go there in my mind. Well, as always “denial” never lets me get away with shit. I’m not saying I am having surgery, but I will keep an open mind. I’ll take surgery over paralysis any day. With the level of pain, weakness and numbness in my hands and feet… this is something I can’t ignore.

Next steps… well, I’m off to my next set of specialists. One to address the tremor, as now addressing it is important since the constant shaking (or in my case I do my best not to shake… I’m happy I can still use muscles to reduce the shaking so it’s not so visible… which leads to increased pain… don’t you love this vicious cycle!). The second referral is to the spine clinic where we will talk about whether or not surgery is the right option.

And… guess what’s decided to come back right now? Insomnia. THANK YOU! I mean… seriously? Is this absolutely necessary right now? (Pause for a moment) Of course it is! Anxiety, stress, nerves… this is what happens. This I should have control over. I am doing my best to give all this over to God, but … well, but nothing, I have no excuse, it’s a struggle.

So. My conclusion is aging is a b*tch. I was so blissfully ignorant all those years ago when I thought people were crazy to complain about getting older. And… it’s not that I want to relive any of those prior years. I’m all about going forward, it’s just I’d like to go forward with everyone I love in great health and with me forever. I’d like to age gracefully… not feel like my body is breaking down bit by bit.

And on that note… I think I’ll go attempt to sleep. Thank you so much for stopping by. I realize this wasn’t the most uplifting post… I hope with my next post I’ll have some better news to share. Remember tomorrow is not promised so make the most out of today. Spend time with your loved ones, laugh and remember what’s important in your life and make it a priority.

I hope you have a pain-free day!

Gentle hugz.

Tamiko

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What Would You Do? Stand Up For Your Pain!

The cameras are rolling…. All eyes on you…. You have probably seen the TV show, “What Would You Do?” I was going to blog about a situation I was in a couple of weeks ago. A truly, stupid situation that I needed some time to get through, mellow out and say to myself, GET THE HELL OVER IT! I wanted to vent and get that shit out of my system, but it would not have helped and it would not have helped any of you! I have to keep reminding myself every hour, every minute of the day to stay positive these days. It’s a challenge, but sometimes that’s what one has to do. Right now, that’s what it is. Prayer and giving my cares and worries over to God is what I’m doing.

My life has been seriously out of balance. Work has been crazy busy – way too many hours. Family and friends close to me are in need of God’s healing hands. The weather has been crazy, mostly rainy and cold. I’ve been in a constant flare for what seems like forever – it’s only been a few weeks. For the first time in a long time I have increased my dose on one of my meds. It sucks, I don’t know if any of you feel this way, but increasing meds makes me feel like a failure, like I’m not managing my pain like I’m supposed to. I agree to a certain extent that I shouldn’t feel that way, but at the same time, I also feel I should be in control of my body. FMS is a crazy place to live. Depression has stolen a lot of my mind the past few weeks and I really want it back. I have fought and fought and fought, I FINALLY feel like I may be starting to come back, it’s so damn hard. It’s like climbing up hill through quicksand (because I have done that before, right?). Trust me, my family really, REALLY prefer the not deeply depressed mother/ wife over the scary/ ugly mean lady that’s been living in the house lately. She scares me too.

Speaking of my family, well specifically my husband… I am not CO-dependent, I am SOUL-dependent (and yes I meant to spell it that way) on (on? of? to?) my husband. I have been blessed with a husband who takes wonderful care of me. He does everything for my children and me. He literally does all the cooking, cleaning, driving, care-taking… this man does my hair, when my daughter isn’t doing it! He also deals with all that comes with chronic pain and depression, oh yeah and let’s not forget – throw in a little bit of ADD. What an effed-up combination! After almost 25 years together he has to be wondering what the hell he signed up for!! There is no return policy here. He had 30 days, but those days have passed and he’s now stuck with me. Thank God!

So! I started out talking about a TV show that puts folks in really awkward situations. A show that ultimately pushes those same to people make uncomfortable decisions. Now I ask you, when you are in a situation where you need to stand up for your pain, do you? Do you stand up for your pain or do you end up suffering? I made a decision to stand up for my pain and I also ended up suffering because I stood up. I am happy I made that decision because I was able to really see some true colors come out.

At the end of the day, most of us can barely stand up for long periods of a time, so why suffer any more than you have to, right? I mean, c’mon! Please do yourself righteous and STAND UP FOR YOUR PAIN!

Thanks for reading! Please tell me what you think, leave your comments and, as always, stay cool!

Tamiko

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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!

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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!!!

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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!

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Fibromites, Do You Wake Up Refreshed? Just Smile!

It is Saturday morning, 6:30am and I am sitting here wide awake. Ask me why… c’mon, ask. Come onnnnn…. Okay fine! Because it’s Saturday and I can actually sleep in (well not really, my daughter has a soccer game and I would have to get up in a bit anyway, but that’s not the point!). The point is, it’s Saturday and I don’t have to get up at this time and it’s like flipping backwards day as usual in my life and I am awake for no reason when I should be asleep and here I am wide awake! Whew! That was a long sentence! It is not as if I got enough sleep so I woke up feeling…. and I hate this word now –> REFRESHED (Wait a minute, I honestly have tried to take that word out of my vocab… so rewind, erase and replace hate with strongly dislike). How many fibromites actually feel “refreshed” when they wake up? (could you actually feel me doing the quote/unquote really strongly with my fingers that time? because I was, well as strong as these grip-less hands would let me). I mean, that is just not something I have felt in years. I wake up feeling like …. hmmmm … not sure I have thought about this … I wake up and think about how I slept, what hurts and will I be able to walk when I get out of bed and then I try and figure out what day it is. Now as my daughter says, “sharing is caring” so when y’all read that one, laugh with me, not at me… because, for example, today I woke up and really thought it was Thursday for some reason. I was pretty happy it was Saturday once I figured it out. Still laughing at me, I mean, with me? That’s alright, that’s why you visited my blog today, some pain relief. :)

So back to my point, most days I wake up feeling tired, half of those days along with tired foggy decides to join the party and maybe 15% of those days depression decides to crash the party and bring everyone down. So refreshed never really happens. I wonder what that’s like. You know when you are watching t.v. and that commercial comes on with the chick in her all white pajamas changing the all white sheets, and the light shining through the wall of glass behind her and she just looks all clean and refreshed? She is the anti-me. I ha… oh wait, really dislike her.

It’s really not all bad, it’s my reality. I’m just saying it’s Saturday and “hellllllooooooooo”, just thought I might sleep in today, but apparently I needed to get up and greet the world. Okay… seriously, I am smiling… I really am. I just realized it. I am crackin’ myself up as I write this… I have to take my own advice, right? Don’t take life too seriously… and THAT my friends is why I am up early. I needed to wake up and get an early start so I could smile and hopefully make you smile. If I didn’t get up early enough I would not have been able to write this before getting out of the house for my daughter’s game. That’s the start of my day… smiling. Awesome!

Hope you enjoyed my post. Thanks for stopping by and I hope you start your day with a smile!

Stay cool!