fibro fog

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Fibromyalgia at Fifty!

50… wow. I can’t believe that I am 50. I can’t believe how quickly the last 50 years have gone by. Damn! I have to make my life better. I realized lately that I spend a lot of time living for another day or another moment. On Sunday, my mind is stressing about having to start work Monday morning. During the week… “Lord have mercy, when will this week be over.”. On Thursday, I’m thinking… “Just one more day…”. There’s a lot of, “I can’t wait until… XYZ“. When that moment or day arrives, my mind has already moved on. I really envy people who can just live for the moment. I want to train my brain to enjoy the now. In order to do that I have to somehow shut my brain off. It’s constantly processing… whether it’s curiosity about something going on 5 feet from me or thinking about a project at work or what will I do when I retire or what are my kids doing right now or what should I eat… I mean seriously. I could have kept typing until my fingers got numb because my mind started going 100 mph just thinking about what I think about!! Oh man, you have really entered into my world… Danger! Danger! Warning! Get out as fast as you can!! Once you enter this crazy ass place, I’m not sure if there’s a way out. At least I haven’t found a way out yet.

I keep looking at myself and thinking, when am I going to grow up? I have so much growing to do mentally… although I am pretty confident I way overachieved on the growing physically so maybe that’s why my mental side is so far behind. I used to be so independent and able. With all this medical bullshit, I have lost my way. The last few months have been really hard for me. Sidebar, how many times do I say that? I feel like I say that all the time… “The last few months have been really hard for me.” It’s as if I want to believe that it really has only been the last few months, when in fact it’s been so flippin’ long I can’t remember what feeling good feels like. If you ask me how I’m doing, I will give you the standard, “I’m good” or “I’m alright” or “I’m fine”. I’m not. I’m not any of those things, I’m feeling like shit… a lot… end of sidebar. Anyway, I have not only lost my way in general, I also got completely caught up with that sidebar. (I did warn you in the first paragraph that my brain was a scary place.)

Well… maybe I should start taking my own advice. OUCH! Damn! That really hurts to say that. I mean, I’m great at giving advice, but taking it? Crazy talk. I recently advised my daughter what she should do to sleep better. On another day I advised her on keeping a food journal so she can get a picture of what she’s putting into her body. I am always telling her what she should do when she’s stressed or angry… do I do any of those things? Welllllllll, I definitely do some of them, but for the most part… Not really. It’s hard! It’s really hard to make healthy choices. This is a typical conversation I have with myself…

Smart brain: “You should exercise today.“

Emotional Me: “Hmmmmmm, I am in a lot of pain, I’m thinking maybe later… how about some coffee?“

Smart brain: “Caffeine is not good for you and that shit you put in it to make it taste good is really not good for you.” (although the word good shows up a lot in that sentence, we all know there’s nothing good about this train of thought)

Emotional Me: “Just this once… last time, seriously, this will be the last time. I really want to be healthy” (followed by a cup of coffee and a carb)

A couple of hours later…Emotional Me, “I’m hungry.” (followed by me standing in front of the open refrigerator or cupboard)

Smart brain: “You should eat something healthy… and before you pick something to eat… take a moment to answer this question, are you hungry or are you bored?“

Emotional Me: “Screw you, I deserve to eat whatever I want.”

It’s basically all downhill from there. Sentences that start with “I deserve… ” come up a lot in my mind when it comes to food. Well, trust me, I have “DESERVED” (she says with a very sarcastic tone) a whole lot because as I said earlier, I way overachieved on the physical side of growing up! I need to come up with a better reward system in my mind. (Preferably one that doesn’t involve spending money or else I just open myself up to a different problem!)

I am a pre-diabetic 50-year-old woman with Fibromyalgia, Depression, ADD, Essential Tremor, GERD, Anxiety, IBS… shit I’m stopping there, that’s enough disclosure for one blog post. Why was I saying that? Oh yeah, I said all that because with all that going on, if today is not a good day to start getting healthy, what will it take? Do I really want to go to the doctor and be told I am diabetic? No.. no I don’t.  I definitely don’t want to hear that come out of my doctor’s mouth. I think I have heard her say enough already.

Today… right now, this very moment. This needs to be the moment I start taking better care of myself. I have a goal of 5,000 steps a day. (Don’t judge, I barely hit that once a week.) How about if I challenge myself to hit that 3 x a week? It’s not much, but it’s a good start. I actually went the entire month of April without any desserts/ sweets… then May hit and let’s just say, I didn’t just fall off the wagon, I think I fell off and have been getting dragged behind it for weeks. I’m telling you… as I write this, right this second, my emotional side has already started the fight. It’s telling me to go cut a slice of that chocolate cake in the fridge and eat it… it’s basically screaming at me to go do it. Bitch. Why do I have chocolate cake in my fridge you say? Because the other night I craved it so bad, my husband went out and surprised me with it. I will overcome that stupid Emotional Me and make better choices. I should not let my emotions influence my decisions. It never ends well when I do that.

I will choose to eat healthier. I will choose to move more during the day. I will choose to live in the moment and not worry about tomorrow. I will have faith that tomorrow will work itself out. I’m not in control of it anyway. I will think positive  thoughts. I will meditate to calm my brain. I will believe in myself. I will be healthy. I have to believe that with hard work the outcome will be less pain, less depression, less digestive issues.

My moment starts right now. I can do this. And now that I’ve said it out loud (or written it for all to see), I hope I can come back with some results in a future post.

Before I go, I want to say a huge thanks to Healthline for including me in the Best Fibromyalgia Blogs of the Year for the 6th year in a row!! It’s an amazing honor to receive this recognition. Take a moment to go check out the other blogs on the list.

Thank you so much for stopping by today. I wish you a pain-free day and feel free to join me in this quest for better health.

Gentle hugz.

Tamiko

PS. My girlfriend gave me a beautiful bouquet of flowers for my birthday. In the bouquet were these ginormous peonies. When these flowers start to open up and bloom, you really have to pay attention because it all happens in a day or two and once the flower opens up, the period of time to enjoy it is very short. This is what I mean by living in the moment. I put the bouquet right next to my desk so I could enjoy the beauty of these amazing flowers. Now you can enjoy them too!

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How Honest Are You?

… vent, vent vent… complain, complain, complain… this is how i feel. I feel like everyday I say the same damn thing. It goes something like this…

girl-150102_640“I am not feeling well”

“I am exhausted”

“I am in a lot of pain”

“That food was so good!” … and an hour later… “That food made me really sick”

“I don’t have the energy for that”

“My legs aren’t working” … “My hands are killing me” … “I have a migraine” … ” …

I can go on and on and literally ON! I know a lot of you folks out there feel like every time you describe to your family or those closest to you how you are feeling … it’s like a broken record. Should we lie? If I don’t tell the truth people assume that I’m feeling perfectly fine and then expectations change. The truth of the matter is, just as quickly as I forget what pain feels like, others forget what me in pain looks like. And honestly… be super-duper honest… is there ever a moment in the day when you don’t feel any pain? For me, the answer is an adamant “NO!” (I’m really not shouting at you… just making a point). So if I go with my baseline pain level and call that “fine” and then just speak to my worse than baseline symptoms, is that better? And better for who? Me? My family?

What prompted all this? Well… I’m not sure. I think it’s because I have been in a flare for months now. I’m not sure how long because at the beginning of this calendar year I, for no rhyme or reason, stopped using my calendar. I had a calendar last year that I wrote all my health stuff in… this year I just haven’t had the energy. I’m not even sure it’s a lack of energy thing as much as it is I got tired of thinking about everything. I’ll be honest… I’m kind of a mess right now. But, as I was saying, I feel like I’ve been flaring for months. I don’t recall being in a flare for this long in years. It’s just not calming down.

So, is it a burden for my family and friends to carry if I am honest about how I am feeling or is it a burden for me to keep the truth to myself? What’s the balance and where do you draw the line? I’ll tell you what. I’m tired. I’m tired of feeling like shit. I’m tired of being depressed. I’m tired of never being able to say… “I feel GREAT!”. I’m just flippin’ tired.

And now that I have vented and complained what the hell am I going to do about it? Ummmmmmmmmmmmmmm, can this be one of those days where I just vent and complain? Do we get those days? I think if you talked to my husband he’d tell you I definitely have those days… but that’s not what I want to do with you folks out there who have chosen to follow my blog. We all have these shitty days, but to just vent and complain brings everyone down including ourselves. How do you get out of the pit of pain and depression? I believe you have to be kind to yourself. Acknowledge that you will have bad days and today is one of them. Tomorrow is a new day. It’s a new opportunity to have a less painful day. A less down day… one that could be a happy day. It sounds strange, but in our world of chronic pain – pain and happy go together. You cannot let the pain take your happiness away. If you don’t allow yourself to be happy while in pain… the alternative is not a life worth living.

IMG_0379Yesterday was a pain and happy day. I was having some issues walking, but I was determined… I couldn’t let that ruin our family day. We started the morning out playing soccer with my exercise ball in our bedroom (don’t tell the kids) – I don’t think I’ve laughed that hard in a long time (let’s just say we were almost in the market for a new tv)… followed by an awesome breakfast the kids made for Father’s Day and then we all piled in the car and spent the day together. A day which included walking… which was extremely painful. In this instance I was not about to let the pain get in the way of everyone’s happiness and just as important mine. We had a beautiful day which I managed with pain meds, laughter, joy and a lot of positive self-talk. A pain and happy day.

So back to my question… how honest should we be? Maybe I will try another approach. Maybe I’ll use the baseline approach and if I’m feeling my normal pain, I’ll say, “I’m doing good!”… I might even try to start saying, “I’m doing great!”. If I’m feeling worse than normal, I can just say “It’s not a great day”.

Our lives are not predictable. The only thing we know for sure is that there is going to be pain, we are going to be uncomfortable. We are going to have days where we want to scream and shout, stomp our feet (although that would cause more pain), and cry… but after you realize your life could be a lot worse and that you are surrounded by the best family and friends anyone could ask for… you realize how blessed you are. Today may be hard… but there’s always tomorrow.

Thanks for stopping by! I love hearing from you either by email or comments.

Stay cool and relax… Gentle hugz!

Tamiko

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Great Fibromyalgia Resources Available!

Today I was reading an article in Medscape entitled, “Fibromyalgia: The Latest in Diagnosis and Care“.  I, like many of your I’m sure, have an extremely short attention span. For one reason or another I actually read this entire article… and thank goodness for that! At the very end Dr. Clauw states, “FibroGuide is a free CBT program for FM patients that has been shown to be effective in a clinical trial and can give patients access to CBT treatments to which they might not otherwise have access“.

While reading I realized it’s a good time to remind every one of some resources that have helped me and may, in turn, help you. So enjoy and I hope this information helps you in some small or even better BIG way!

All of these resources, and much, much more, are available on my Tools & Resources page:

FibroGuide: Take the time to check out this link, it’s not just a guide, it’s an application that provides personalized steps to help resolve the specific symptoms you are struggling with at a given time (including tips, worksheets and audio exercises!). This  Symptom Management Program for People Living with Fibromyalgia was adapted from the ongoing work in patient education for Fibromyalgia led by David A. Williams, PhD, within the Chronic Pain and Fatigue Research Center (CPFRC) at the University of Michigan.

Knowledge Center: Fibromyalgia, Chronic Pain & Depression

Here are some “best of” compilation pages:

wellnessworkbookI created a couple different journal pages to help me track my progress, you are welcome to use… I hope it helps you!

For pain relief… laughter is the best medicine! @TheBlogess is AWESOME and when I am down, nothing makes me laugh more than when I read her blog…

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Life is Only Getting Better from this Point…

Lord have mercy!

Those three words basically sum up everything I need to say for today’s post.

Tomorrow marks the two-week point after my Anterior Cervical Discectomy & Fusion (level C5-6 ) surgery. September 4th was a momentous day as my husband and I also celebrated our 20th wedding anniversary (a total of 28 years together). I figured only good things could happen if I scheduled my surgery on that day. As I look back on the last month my surgery is only a blip on the screen of events that have occurred. I had a close friend and second mother to me start chemo, a couple of family friends have had scares with what we thought initially were strokes (thankfully the final diagnosis was not as serious), another friend had to fly over to Hawaii to move her mom to a senior facility, a very close friend’s mom had a stroke and we lost her shortly after, my folks lost a friend and a cousin in the same week… another very close friend suffered a loss in her family… the hits just keep coming. It’s all a reminder that tomorrow is not promised. A reminder to live everyday like it’s your last. I can’t imagine supporting my mom through chemo or putting her in a senior facility (not even mentioning the fact that a flight is required every time you want to visit) much less suffer the loss of her passing. The fact that she is 15 minutes away and her health is somewhat stable is a blessing.

I know that my surgery in  no way compares to the life changes other folks are going through. I am going to get better. The surgery is going to make me better, whether it’s mentally or physically. By mentally, I mean I know that the pain I experience is not related to the cervical stenosis. That issue is resolved. Any pain I experience going forward is likely going to be due to my Fibromyalgia. I don’t have to spend any mental energy wondering about it. That said, I thought I would share some of my experiences with you Fibromites in case you face the same surgery. It’s not something to take lightly. I had some very difficult days post-surgery (my husband can attest to this, I think he’s still recovering from it as well). The weeks before the surgery my insomnia decided to drop in and pay me a visit. I would fall asleep and wake up a couple of hours later and sometimes I could go back to sleep, other times I would either read, just lie there and stare at the ceiling or get up and start working… nothing like starting my workday in the middle of the night!

As I started to type this the other day, I was looking at a clock that said 2:58am (ummmm when I actually typed this sentence it was in fact 2:58am). Instead of sleeping I ended up watching the Dreamgirls movie and attempting to draft this post. When I came home the first few hours were okay. Fast forward to the night and things starting to spiral… first I took a shower, which completely depleted my energy. Then my husband tried to change my bandage… this was a mistake.

Let me just digress for a moment. While in the hospital everything was okay. I had an IV that they kept shooting antibiotics, anti-nausea and pain meds in for the first 24 hours. I didn’t get much sleep the first night but it wasn’t for lack of trying – the nurses and dr.’s kept coming in every hour or so to check on me. I was sooooo tired on day 2, when the PT person came in to get me up and walking and teach me exercises – I literally fell asleep in the middle of an exercise. I had to finally ask her to come back later. Since I didn’t complete the PT, they couldn’t release me so I ended up staying another night. The second night the nurses left me alone most of the time so I slept for hours and hours. On Day 3 I woke up feeling pretty good and I wanted to come home. This, my friends, was my first mistake. I should have waited another 24 hours. I wasn’t ready.

freak-out-catBack to the first night at home… as soon as he started to take the bandage off, I started going into a full-on panic attack. I freaked out… and when I say freaked, I mean F-R-E-A-K-E-D out!! I had to literally talk myself off that cliff, use every coping skill I knew to calm down. I had so many places where they had used tape at one point or another that my skin felt raw. The pain I felt as the tape was getting pulled off literally felt like my skin was getting peeled off (sorry for that super gross reference). Okay. I know I’m being overly dramatic, but that is honestly what was going through my head. In my mind, the tape was going to pull all my stitches out and I was going to have to go back to the hospital and have them fix me up. Okay, I now accept the award for drama queen with pride (okay not pride, I’ll just take the damn award).

At this point my nausea went into full swing. This was my biggest issue from the moment I got into my hospital room and they had my pain under control directly after the surgery. They had tried a couple of anti-nausea meds until they gave me one that worked. When I went home, I didn’t have any anti-nausea meds… BIG F’ing MISTAKE! Oh my Lord. My husband tried calling the advice nurse to deal with it and they gave me a prescription… for something… that didn’t work! ugh.  I called again the next night because I was miserable and the advice nurse talked to the spine dr. on call who advised me to go to the emergency room. Ummmmmmmm… that’s not gonna happen. Tip: If you are having surgery on a Thursday or Friday and you go home over the week-end… make sure you have all the meds you need BEFORE you leave the hospital.

schlaflos

The picture I finally decided to go with…

Day 3 – miserable… called the charge nurse for the spine clinic and asked for the drug I had been taking in the hospital for the nausea and my husband went back to the pharmacy for the second time in 24 hours. I also decided to back off the pain meds a bit and stop taking the stool softener (okay, I apologize again for too much information). The combination of these three things finally resolved my stomach/ pain issues and things started to get a bit better… except… except… well except for that damn insomnia. (Okay, seriously… I went to go look for a picture to put in my post to represent insomnia and as I did that I was in a group text with some friends… then for one reason or another I decided to go look at Facebook, which I never do anymore and ended up going through my timeline and sending my mom a life on one of those FB games which resulted in me actually playing the game… and then I checked my email… and then I realized I was in the middle of writing this post and I need to finish it! Geez Louise… ADD at its best!!!!! Annnnndddddd of course, the best part is I still need to find the picture I want to include.) As I was saying… the insomnia was kicking my ass.

Days 4, 5 ,6 – let’s just say that being up at 2:58am was normal for me. I would do whatever it took to finally fall asleep sometime after midnight… I’d wake up an hour or two later and basically that was the extent of my sleeping hour(s). Miserable doesn’t even begin to describe how i was feeling. Walking zombie… very frus-us-trated (that’s how my daughter used to say it) walking zombie… but I was trying not to complain because my nausea and pain was pretty much under control. I watched a lot of bad tv… walked around the house, moved from the bed to the couch to the other couch to the recliner to the couch… you get my drift (I love to say that).

Days 7, 8 – I gave up… called the charge nurse again for the spine clinic and she referred me back to my primary care physician. Ummmmmm, can I just tell you that I almost lost it on the phone with her? Not her fault, she did the right thing, but my frus-us-tration was getting the better of me. I am very thankful to Kaiser and their staff, they really do an excellent job. My PCP got back to me within an hour on a Friday… at 4:30pm… and by 6:00 my husband was back on the road for his 3rd trip to the pharmacy since I came  home. My PCP gave me two different meds to try (I love that she gave me options). I tried the Restoril out and on the first night… I slept for 2 1/2 hours. On the second night I took the Trazodone and at 4am I gave up and took the Restoril and slept again for 2 1/2 hours… this was the night I watched Dreamgirls.

Rainbow womanDay 9 – SUCCESS!!!!!! I doubled the dosage of the Restoril and ladies and gentlemen… taadaaaaaaaa!!!! I slept through the night. Everyone in the house celebrated. That’s a lie. My husband and I celebrated… all day long I walked around the house shouting, “I SLEPT THROUGH THE NIGHT!!!!!”. It was like the first time the kids slept through the night… you know the joy I’m talking about? I felt like a brand new person. It had been months since I had slept through an entire night.

So… this is a super long post, I hope you don’t mind. I’m now on Day 13 and I’ve been sleeping pretty well, managing the pain and nausea and basically feeling a bit better every day. I’m on my way. Tomorrow I get to leave my house and go in the car for the first time in two weeks. I am going for my first post-op appointment. I’m hoping they clear me to at least ride in the car for short rides. I hope to go back to work sooner rather than later (I mean in a perfect world I would not have to work and I’d just scrapbook and go to the beach and swim in my olympic size infinity pool at my beach house big enough so all my friends and family could stay with us at the same time… “and now we return to our feature presentation – Reality“). I’m not ready to work just yet, I still lay down most of the day. But I feel pretty good.

In addition, I’m proud to say that in the last month, my son got his driver’s license and started a new job, my daughter started her junior year in high school and she got her driver’s permit and I am surrounded by the most amazing, supportive, loving family and friends a girl could ask for!

Thanks for hanging in there and sharing this experience with me. Things are only going to get better from here. I believe it.

Stay cool, stay chill, stay calm and pain-free.

Gently hugz!

Tamiko

PS. Did I mention… I officially started menopause this month. Watch out family, here I come!!

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Wellness Workbook – Journaling your way to a healthier life!

It’s finally ready!!! I have been working on this Wellness Workbook for a while now. To be honest, I created it over a year ago and I am just now finalizing the document and sharing with all of you. Like many of you, I have tried many different medications, diets and I’ll call them “gimmicks” to alleviate my pain. At the end of the day, what works is what most of us already know… diet, exercise and most important (in my mind)… the ability to relax and manage our stress.

I originally created the templates in this workbook for myself as a way to document my goals for better health and, as important, hold myself accountable to working towards achieving those goals. I pulled it together from all the various books and materials I have read over the course of the years, various classes I have taken, and my personal experiences.

wellnessworkbookIncluded in the workbook:

  1. Wellness Wheel: tool used to help you discover opportunities for an improved quality of life and create goals based on those areas.
  2. Wellness Plan: worksheet for documenting your short and long-­‐term health goals and listing up to four key goals in the areas that you want to work on that will help you achieve your overall short and long-­‐ term goals.
  3. Flare Plan: worksheet for documenting the tools that help you, both physically and mentally, when you are in a flare. It helps to document these so you can just flip to this page and use the tools that you know will help you.
  4. Exercise Quick Reference Sheet: there are countless exercises you can do to help with your pain, these are just some of the stretches and strengthening exercises I use on a daily basis.
  5. Reference Information: information to help you better understand how to use the daily worksheets.
  6. Daily Wellness Journal: worksheet for you to document each day; your exercise, food, pain level and how you addressed your pain, gratefulness and memorable moments.
  7. My Priorities for Today…: worksheet to document your personal and work priorities on a daily basis.
  8. Automatic Thoughts Worksheet: template to help you manage your stress and negative thoughts.

I hope that it helps you as much as it has me. Please feel free to share with whoever you feel might benefit from this type of resource, I would just appreciate if you would send them to my blog to pull down the latest version. You can either click on the image above or go to my Tools & Resources page to download the workbook.

I would also love to get your feedback so I can continue to make improvements. You all know best what it takes to manage your health and I love to hear new and creative ways to have better days.

Stay cool and keep on smiling!

Hugz.

Tamiko

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It’s Monday… What Kind of Week Do You Want to Have?? You have the Power to Make it a Good One!!

It’s a Monday night… almost 10:30 and I’m sitting here thinking to myself… “What kind of week do you want, Tamiko?”. I have the control to determine my week. I have to keep remembering this. I can complain and end up discouraged and having a negative vibe or I can praise and feel encouraged with a positive vibe. Hmmmmmmm, seems an easy decision… an obvious decision – but habits are hard to break. I choose to take one minute at a time. I have decided to start tomorrow and only say positive things, not gossip and not complain. I’ll forgive myself if I make mistakes, but at least I know I’m going into it with the right attitude. I just have to wake up and start the day right… right?

A couple momentous events have occurred, even since the last time I posted… First, THANK YOU! My blog reached 20,000 hits. I can’t even say that and begin to believe it. 20,000 hits! That’s awesome!! My second, and I should say equally as momentous event is… and I’m going to write this in bold…. I walked 15 miles last week. Let me say that again… I walked 15 miles last week. I have never done this before. I don’t think I have ever walked 5 miles in a week. I walked 1.5 miles at a time in the beginning, sometimes twice a day and at the end of the week I was walking 3 miles straight through. I still can’t believe it.

Let me tell you what I did differently than before:

photo

Views while walking in the rain…

  • I purchased some new shoes. I had the same shoes for years… I decided to get some good shoes (Sports Authority, $40 Nikes).
  • The first time I walked, I went out by myself. I didn’t know it at the time, but it was a deliberate decision to go alone. I put a podcast on and I walked at my own pace. Which let me tell you… was pretty slow. I walked up the hills with very, very short strides and with my back straight so I wouldn’t put a strain on my shins or back. I took my time. I took in my surroundings and didn’t walk to hurry and get to the end, but I walked to learn how to enjoy being outside and breathing in fresh air.
  • Each time after, I kept the same, slow pace being very cognizant to not go overboard with my pace or stride. Learning from my past… Every time I have started walking like this, I ended up getting shin splints and having to stop for weeks… which then resulted in me stopping all together.
  • I tracked my walks in an app on my phone… duration, pace, distance (uses GPS). I have a couple of friends that see my activity and we encourage each other. Seeing my accomplishment in this app is very motivational for me.
  • I didn’t let the weather stop me… and I was happy that I went out in the rain/ sprinkles… it’s just water!

If I can accomplish these things… YOU CAN TOO!

So, what kind of week do you want to have? I want a good one and it’s in my power to make it happen!

Thanks for stopping by. Have a great week!

Gentle hugz.

Tamiko

P.S. Let me tell you… after I finished writing the content for this posting, I went to insert the picture that you see. I have been tested. It has taken me almost 20… TWENTY minutes to get the picture into this post. I am not complaining, I am saying I have been tested. So… I just practiced my breathing and reminding myself the point of my post. LOL!! :)