Wow… even though it’s not unusual for me to go a long time in between blog postings, I have to say, I’m always a bit disappointed in myself for being so out of touch. The last three to four months have been challenging, tough, crazy, emotional… and so on and so on and so on! Just another day in the life, right? I know that I’m not the only one who goes through these ups and downs in life. I firmly believe that those people who are just always going through life without any struggle at all… well, for one they are the exception and for two (is that really how you say this grammatically?), for two… they aren’t human. Everyone has to have some amount of struggle in their life, some people are just wayyyyyyyyyyyyyyyyyyyy better at handling it than I. I get it. I’m my worst enemy. Well, me and my medical crap. No excuses! (Me yelling at myself)
So we are approaching the end of 2013. My annual family project to create a scrapbook page reflecting my most memorable moments from this year plus goals for the upcoming year is just days away. My husband helped me to start thinking about my most memorable moments and I thought to myself… why not blog about it! So… here we go!
My Most Memorable Moments of 2013
- New addition to the family… baby Annabelle!
- Fabulous vacations to Santa Barbara and Tahoe
- Watching my son at my husband’s show… one of my favorite memories of the year
- Completing my first 5K with my closest friends and my god-daughter and daughter!
- Moving houses… again
- Changing jobs… new manager… new team
- Being listed on Healthline’s Best Fibromyalgia Blog for the second year in a row
- Experiencing life as a freshman in high school through my daughter’s eyes
- Watching my son mature into an incredibly amazing adult
- and…. this is a good one… being published for the first time!
I was contacted back in August to submit content for a collection of stories for a book about living with Fibromyalgia. I didn’t think that my submission would actually get published, I figured with everyone out there that had something to share… pick me? No. I was completely surprised when I was told that my story was going to go in the book and even more surprised to see that we all received author credits on the front of the book! How cool and exciting is this?? I can’t believe it’s taken me this long to write something about this in my blog. I’m excited to share with all of you my first entry into being published!
Big props to Shelly Bolton!
Well folks… I’m exhausted and ready to go get in my bed and attempt to get this essential tremor under control and my body into somewhat of a relaxed state.. I do appreciate all of you out there more than words can express. Your support over the years has allowed me to share my life experiences in an honest and open way, without judgement.
I wish you all the very best for 2014… and hopefully we’ll see some wins in the medical field that will help all of us lead less painful lives.
Stay cool! Gentle hugz.
My contribution to the book…
My Foggy Brain… My Journey… My Life
By Tamiko Arbuckle
When you wake up in the morning, what is the first thing that comes to mind? For me, it’s… “What hurts? Can I move? Will I be able to get out of bed? Is my brain functioning?” After that, I lay there for a while slowly moving from my toes to my forehead to assess my pain level and mentally prepare myself for the day to come. It wasn’t always like this…
Let me introduce myself. My name is Tamiko and I live with Fibromyalgia, Major Depression, Anxiety, ADD, Essential Tremor, and honestly? I could go on, but I am not here to tell you about all my medical issues. I was asked to contribute to this book and share my story… my journey with Fibromyalgia. So! Sit back, relax and hopefully while you read my story; you will smile and even possibly laugh a little bit. My life is here for your reading entertainment (and it’s possibly the only time I will ever hope someone laughs at me!).
My own personal disclaimer… I’m sure like many of you reading this, your ability to remember things is not as good as you’d like it to be. Half the time I don’t know if it is an actual memory I experienced or a memory from a dream I had at one point. That is probably the most frustrating feeling for me… The number of times someone says to me, “remember when… ?” or when I am sharing an experience I had (or think I had) and half way through the story my mind just draws a blank. I say all this because I am about to tell you my story. It’s what I remember and Lord knows my memory fails me on a daily basis!
When I look back over the last four decades (honestly, has it really been that long?), I think of the different phases I have lived through… my childhood (mostly amazing until my angst-filled teen years), my 20’s and 30’s (marriage, children, fish, dog, buying our first house, cars etc. not necessarily in that order), my pre-FMS crazy working years and now to my post-FMS diagnosis years. No doubt about it, it’s been one heck of a roller coaster ride over the decades! I don’t believe people that end up with a diagnosis like Fibromyalgia have lived a relaxed, trouble-free life. I believe you have to work really hard to break your body and end up in this kind of pain!
Growing up, I was a feisty, rebellious child who questioned and challenged everything (and I mean everything! Rules? What rules?). Now that I have had the privilege of being a parent, I feel like I should start and end every day with a five-minute call to my folks apologizing to them for all the heartache I caused over the years. It would go something like this:
…ring… ring… ring
My dad (because my mom basically never answers the phone): “hello?”
Me: “Hi dad!”
My dad: (laughing… he always laughs when he hears it’s me on the phone, it makes me smile every time) “Hey! Is that the mother of my grand-children?”
Me: “I’m calling to apologize again for driving you to the brink of insanity during my young adult life. I know I caused you to worry excessively. Thank you for not giving up on me!”
My dad: “CHIZUKO!!! Your daughter is on the phone again…” (Now I hear my folks bickering as my dad hangs up and my mom picks up.)
My mom: “hello? Who is this?”
Me: “Mom… it’s me.”
My mom: “huh? I can’t hear you, who is this!”
Me: “Mom… it’s me! I was just calling again to apologize…”
My mom: (cutting me off) “Oh my God! Don’t be silly!” (I am editing what she’d actually say so you don’t think badly of this wonderful woman I call my mom).
Me: “Okay mom, tell dad I love him… I love you and I’ll talk to you again in the morning!”
From a toddler until the day I moved out I gave my parents hell. I thank the Lord every day for blessing me with parents who loved me unconditionally and had endless amounts of patience and forgiveness.
As a child, I strived for independence at a young age. I loved school until I moved in the middle of 9th grade. I transferred from a very small junior high in Oregon where I had finally reached the top of the class to a pretty big high school in Palo Alto, CA where I was once again at the bottom. I found myself in a new school where I knew no one, in one of the wealthiest cities in the area… hundreds of miles from all my friends. Let’s just say my rebelliousness reached an all time high. I couldn’t, or better said… I didn’t know how to handle the changes. At 15, after realizing I wasn’t going to succeed in regular school, I started independent studies and got a job. I graduated early and started working full-time.
The feeling of working, setting goals, meeting deadlines and ultimately advancing in my career became very important to me. I was learning what it meant to be responsible and the feeling of accountability for my every day activities… and at the end of the day, the pride I felt in my results drove me to want to work harder.
At a certain point, it wasn’t the advancement I was looking for but the feeling of accomplishment and value that I added to the organization. As I continued to work harder and harder and take on more and more responsibility, my hours significantly increased along with my stress. At the height of all this, I was working 16+ hours a day (at least 6 days a week), eating all my meals in the office and getting very little sleep. When my children were born, I worked up until I went into labor and went back to work just weeks after they were born. For close to two decades, my work life completely consumed my time and energy. My personal life was non-existent or completely out-of-control. My ability to balance my work and home life was a constant challenge…I felt like a success at work and a failure at home.
And then one tragedy hit after another… first a very close friend of mine was killed in an accident, then my grandmother passed away, followed by my aunt and then my uncle and then my godmother and then an aunt… and it just kept going. The sadness was overwhelming and my ability to recover became more and more difficult. We were traveling to hospitals and funerals and with the amount of hours I had been working, keeping up with everything just became too much.
One day, while playing with my dog Tani outside I felt my back go out. It was at that point my body made a decision it was no longer going to support my lifestyle. Either I make a change willingly or it was going to force a change. I bet you can guess what happened.
I ended up on the couch, where I remained for weeks unable to move. Days passed without me knowing what was going on. I was on so much pain medication that the house could have burned down and I would have slept through it (or not even realized I was about to go up in smoke!). My family still remembers the days when they would laugh at me because I appeared so high (Ummmm… I can’t really sugar coat that, I was actually pretty high!). Apparently conversations with me at that time were rather amusing. I just have to believe them… I remember… well, I remember absolutely none of those conversations. This is where my journey with medication and doctors began.
I was in and out of the doctor’s office for four years before I was finally diagnosed with Fibromyalgia. The only solution I kept hearing for four years was a prescription of pain pills. When one stopped working I would move to the next one. With all the medical research and advances that have been made, not one of those doctor appointments ended with anything other than a lot of frustration and a new prescription. Each prescription had side effects that impacted my ability to get back to a normal way of life. It may have numbed the pain, but it also numbed my brain (did you catch that rhyme I just did?). So even though I was no longer working those crazy hours at work, I was still not available for my family. Not because of my job, but because I was in this drug induced state every day and night.
The first diagnosis I received was Degenerative Disc disease. It was good to get a name for the pain I was experiencing, but it just didn’t explain everything that was going on. The meds that were prescribed were horrible, I remember one of them gave me blurry vision (that was fun thinking I was going blind).
I was not just experiencing back pain though. I was having a really hard time remembering things… like driving in the car and forgetting where I was or where I was going… or how about losing everything (over and over again!)… how to do basic every day stuff… and worst of all… at work, where I had excelled my entire career, I was suffering. It was taking me ten times longer to accomplish what I would do without any thought. My pain was no longer just in my back it was moving all over the place. I was having a hard time walking. I couldn’t be touched; I felt like my whole body was one exposed nerve… and let’s just talk about my inability to sleep. Sleep was my enemy at night… and the more frustrated I got, the harder it became. My neighbor friend still talks about it… no matter what time he came home at night or left in the morning, the light was always on at my house and I was up. On the flip side of that… Even though I couldn’t sleep, I was exhausted. ALL of the time. No energy for anyone or anything.
I felt like I was crazy. My depression was just getting worse and worse and my anxiety was at an all-time high. I would keep going to the doctor for one reason or another and each time my doctor would look at me with that look. You know what I’m talking about… the “look”. The one that says, “I am really trying to help you, but nothing is wrong with you so I’m going to try my best to be empathetic and prescribe something to make you go away.” That look. More drugs. I left many doctor appointments holding on to my emotions by a thread until I got to my car. Once I shut that car door… the emotional floodgates opened up and I was a wreck. Some of those appointments I wasn’t able to keep it together, I just lost it in front of the doctor, my frustration getting the best (or worst) of me. Those are the moments I cherished… my doctor looking at me as if she was deciding whether or not she needed to call in a psychiatrist for support. Me feeling completely hopeless and wondering whether or not something is wrong with me… like is this stuff real or is it all in my head? No one wants to feel like a basket case… especially those of us who were raised and grew up as strong, independent women! I mean I can literally count on one (maybe one and a half) hands the number of times I actually saw my mother cry.
So one day, I was really feeling like crap and I pushed myself to, once again, make an appointment. My doctor was out so I saw a different doctor who then referred me to the Rheumatology department. In a twenty-minute appointment my life changed. The doctor diagnosed me with Fibromyalgia… just like that. He had never seen me before. He asked me several questions, that I’m sure if you are reading this, you are familiar with. How long had I been in pain? Where was the pain? Followed by him asking me to stand up while he proceeded to push all the “tender points” in my body until I was literally crying my eyes out and couldn’t hold myself up any longer. I was a winner… I felt pain in every tender point. Twenty minutes later he says to me, “You have Fibromyalgia.” I mean, he literally said it to me like he was diagnosing me with a cold. He really didn’t understand the magnitude with which this message came to me. To him it was no big deal. To me it was as if he told me I won the lottery… only without the jumping up and down, and of course there was no money at the end of that winning ticket!
I finally had a name… Fibromyalgia. Fi-bro-my-al-gia. What?
At first I thought my prayers were answered. That bubble was burst real soon! I realized very quickly, even with a diagnosis, there was no cure… no solution. I started reading everything I could get my hands on. At that point, there wasn’t a ton of information out there. I read book after book and then while doing research online, I discovered all these blogs. I was not alone. There were other people out there who had gone through the same thing as me. Except after reading through a lot of the blogs, I felt worse. Everyone was sharing all their feelings around the pain, frustration and a whole lot of hopelessness. I really started to think my life was over.
I was in a dark place. Literally. I kept the blinds drawn in my bedroom and I stayed in that dark room for many days and weeks. I remember I couldn’t walk, I couldn’t shower myself, I couldn’t do anything on my own. I would try and sit down for dinner with my family and half way down the hallway to the dinner table I would just break down in tears. The pain was unbearable. My husband would turn me around and help me back in bed. I missed the soccer games, the school and family activities, the parenting. I was no longer living in the real world. I was in some alternate universe where all I saw was the four walls in my room, a ton of TV and, I played a lot of Facebook games (Farmville anyone?).
I needed an outlet. I needed a way to get rid of all the crap in my head and the emotions I was feeling. I decided to start my own blog, just for myself. I didn’t share it with anyone I knew. I didn’t want people close to me to read stuff that was so painfully personal to me. I just started writing. At the same time, I joined the Twitter world. I found this amazing community of people, men and women, young and old, from Sweden to the UK to Canada to all the states in the U.S… this stuff is not picky, it will attack anyone… at any time. I started to tweet and share my thoughts, my pain and bits and pieces of my life. I shared information that I thought would help people. I started to share my blog. I found my voice and I found a community that understood and supported me.
This was my turning point. I realized I was not alone, and more importantly I realized that there was life with Fibromyalgia. I got more aggressive with my doctors and I was finally admitted into the pain programs at Kaiser. I started to learn how to cope and manage my pain.
I have been asked a lot over the years how I cope with chronic pain (physical and mental)… I have many answers to that question. Laughter… laughter is a huge way to kill the evils of pain. Getting out and spending time with my family and friends, the folks that have been there for me through this long journey. They may not truly understand what it’s like to live with all the stuff I struggle with, but they certainly have been there to make me laugh. I have learned I don’t always have to leave my house to “get out”. Sometimes just getting out of bed and out of my bedroom is enough. That’s the thing… the people that I surround myself with understand my limitations. It’s important to keep positive, uplifting folks around you… especially if they make you laugh!
Exercise… we all hate it. If we haven’t done it in a long time, it’s painful to start. For me, it’s the difference between flaring 24/7 and flaring a few days here and there. I believe it is the gentle movement that wakes your body up. It’s a time when you are in control and you are telling the pain to go away (or you can use more harsh words than “go away”, if you’d like… I do). The key for me is “gentle” movement. Yoga, Tai Chi, Qigong, Feldenkreis, stretching and walking are the types of exercise I have tried and have helped me. I have even completed a couple 5K’s (walking, of course, let’s not get too crazy here)!! For me, my depression and anxiety are as bad as my Fibromyalgia; even worse now that I have learned how to manage my pain better… exercise is key to better mental health for me.
Eating the right foods… I struggle with this every day. Food makes a huge difference for me, not only because of the pain, but I also suffer from IBS and GERD. If one thing is exacerbated than the pain jumps right in there to make sure it gets its proper attention. I have to stay away from the food that triggers a bad reaction in my body… basically I have had to learn to live without a lot of really yummy food. If I stray even a little, I suffer. It is the true definition of consequences (Darn those consequences!!).
There is always that balance that has to be kept between pain management, digestive health, and mental health… the worst of all three come out to play when there’s stress. So keeping my stress down is critical. Meditation, prayer, and a lot of lessons I learned from cognitive behavioral therapy help keep me sane. Well, most of the time anyway. No one’s perfect. If you believe you have to be perfect, stress will be your best friend forever.
There was a time when I went 6 months without driving. Actually there was a period of years where I didn’t drive… except maybe down the street when absolutely necessary. There was a long period of time when I walked with a cane… a very long time. There was also a time when I used a wheelchair. I wasn’t able to shower without my husband washing my hair and helping me bathe myself. I couldn’t go up and down stairs. I couldn’t ride in the car for long periods of time. I call this my “dependent” period.
During that “dependent” period, I was on so many prescription pills that I had to keep getting bigger and bigger pillboxes. I had to get one that I could separate my morning, afternoon and evening pills. One day I decided to just stop the madness. I never liked taking pills and I felt like the side effects were far worse than the benefit. When I finally made the decision to stop the meds I had been suicidal for months. Every day all I thought about was if I was dead, there would be no more pain, no more suffering, no more sadness… and no more burden on those around me. I played the scenarios out in my head, what it would look like with me gone. My family moving on with their lives without me… I could no longer see beyond the black and grey clouds that constantly enveloped me. I was desperate. I finally looked at my husband one night, while in tears (again) and we decided together that it was time to do something drastic. I called my doctor and we agreed on a plan to taper off everything. The best decision I would ever make.
It has been almost two years now and I will never (at least I hope I never) rely on medication to manage my pain long-term again. I ended up going back on anti-depressants… I am not sure I can ever live without them… and every once in awhile I will take something to help the pain and I am okay with this.
I am still dependent on my husband, he’s my rock, my best friend and at times he is still my caretaker. Thankfully, I am not in that “dependent” period anymore. I am driving. I am finishing 5K’s, I am more self-sufficient, I am a healthier person overall. I am living.
Every day is not a good day. There will always be bad days. I know it’s my choice how I fight back and whether or not I fight to live a healthy and happy life. I am blessed that I don’t have anything life-threatening. What I have is a reminder… a reminder that if I want to feel alive, I need to choose a lifestyle that brings me joy and gives me the freedom to live well. I know I need to make choices that will result in less pain. The pain never goes away, but it doesn’t have to be debilitating every minute and every hour of every day.
I have had my blog for almost four years now. I focused my blog around hope and how to live with Fibromyalgia, with Major Depression, with ADD… and a whole host of other things that keep joining the party of diseases and syndromes that seem to enjoy being hosted by my body. The last diagnosis being Essential Tremor… that’s a fun one! I go back and forth on whether or not to continue with my blog… for me, it has served its purpose. It saved me when I thought no one understood what I was going through. It lifted my spirits when people left comments telling me they felt the same way and thanked me for sharing… it helped my family and friends better understand my pain and how to respond to my changed life. When I think about taking my blog down, my husband is the first one to say “NO!”. He reminds me that no matter how I am feeling today, people still visit it for information, and to see that there is someone out there who understands. So, for now, it’s there. And it’s the reason why I was given this opportunity to share my journey with you.
I hope that my story has given you hope. You can stop by and visit me anytime at the following URL: https://myfoggybrain.com/
Gentle hugz! Stay cool and live your life to the fullest… tomorrow is not promised, but take the opportunity today to make it a great day.