What the hell is going on?!! I ask myself this every day. It’s a question that has a bullshit answer. You know exactly what I mean… you’ve been here. I’ll tell you what happened. July 5th I went into a flare. Since that day my pain levels, fibro crap and depression have gotten worse with each day. I haven’t been in a flare like this for years. This shit makes me angry. I thought these days were behind me. I mean, seriously… years have gone by… YEARS!! (do you hear me yelling?)… years without this kind of flare. I’m back to shuffling around the house like Tim Conway in the Carol Burnett show (for those of you older folks that remember). I feel like I’m falling in slow motion and can’t grab anything to stop the fall.
I know you know what I’m talking about because we all go through it. The frustration, the anger, the exhaustion, the anxiety, the depression… and so on… and so on… It’s bullshit. You know the funnest part this time? Soooooo apparently my eyes have decided they are tired. In the last week I have taken all my glasses from the last 5 years or so, laid them on the table and tried each one of them on to try and find a prescription that will work for the day. Each day is different… of COURSE each day is different. I think it’s a conspiracy…
Left eye: “Hey Righty! Over here, over here! Yeah… Soooo, I’m tired of these glasses. What do ya say we force the issue?”
Right eye: “You know Lefty, that’s just not right… she has enough going on.”
Left eye: “Seriously, we have to wear the same thing every day! Aren’t you tired of this old frame?”
Right eye: “Hmmmmm, now that you mention it… I could use a new look. Maybe that will lift my spirits a bit… yeah, let’s do it!”
Left eye: “Okay, here’s the plan. Let’s get blurry! Ready? Set? GO!”
So my vision is blurred, everything seems slightly out of focus no matter which pair of glasses I sport. The crazy thing is… I know even when (because it’s just a matter of time), even when I get new glasses, within 6 – 9 months, the cycle starts over. These eyes of mine… I can’t complain, I am blessed to have the ability to see.
I know that, for the most part, I try to be upbeat in my posts… I’ll get there, I just need a minute (start counting the seconds… one, two, three…) It’s been a rough few months. Although this flare has been the worst of it, I have been struggling. I have been trying to figure out the best course of action to take next. I had actually started to believe that maybe… just maybe I would push the spine surgery. As soon as the thoughts started to become real, this flare came on. It’s almost as if my body is screaming out that I should have this surgery. So, I scheduled it. I’m pushing forward. I’m having the surgery… Next week another MRI (ugh) and Botox shots in my neck (to suppress the tremor) and then starts the mental preparation for the surgery in September. I tried a couple meds to help the tremor (long-term) and both of them made my depression worse. Lord have mercy, that’s all we need (I say “we”…. meaning myself and all those who have to live with me!). So, I’m off the meds… in fact I took myself off everything except my anti-depressant and the OTC supplements. Well… I think my sixty seconds are up… consider the whining over.
Let me share with you the awesome stuff that has happened since my last post.
The MOST awesome? My son graduated from UC Santa Barbara. The graduation was wonderful and I couldn’t be prouder of him. He’s overcome a lot to get to this point in his life. If you’ve been following me for a while, you’ve been there through his high school year graduation and now this momentous occasion. It’s amazing. One of the proudest moments in my life as a parent. We have had some of the best conversations in the last six months. This child is no longer a child. He has definitely grown into this awesome, amazing, smart (so damn smart!), caring, loving, beautiful man. It was a blessing that I was physically able to go to his graduation and get through this amazing weekend with family and friends. And the best part? My son is home for good and we are all together as a family again.
Both my kids are working! The super cool thing about this is they are both working at the same job. My son a leader and my daughter a junior staff. I watch them come home from work and smile. The stories they tell of what happened during their work day… well it reminds me of when I started working and how proud I was to contribute and do a good job. If I have done anything right in my life, My husband and I raised our children to be better than us. They are further ahead of where we were at their age. We can’t take all the credit, it has honestly taken a village of the most loving and caring friends and family.
My parents celebrated their 56th wedding anniversary a few weeks ago. It’s a beautiful thing. I can only pray my husband and I make it there. This year we celebrate our 20th… and although we celebrate 20 years of marriage, we are really celebrating almost 30 years being together. I’m old… and with age comes wisdom, right? Maybe, but I’m probably more old than wise. :)
So, although I am struggling with my health… there are so many beautiful things to feel good about. Perspective. It’s always about keeping things in perspective. I have both parents, my extended family and so many friends that I consider as my family around to raise me up, make me laugh, talk me through the tough times and step in when I need the help.
I hope and pray that you have a support system to help you get through the rough times. Thanks for hanging in there with me through the good and bad. It’s because of your support I know I’m not alone.
It’s an amazing honor. I checked my blog over the week-end and I noticed my stats were off the charts… My initial thought was that the spam was completely out of control. As I took a closer look at the referrals, I realized that http://www.healthline.com awarded my blog one of the best of 2014… for the 3RD YEAR IN A ROW!!!! WOOHOO!!!! It’s awesome. It’s amazing. It’s super cool. It’s so many things to me, I can’t believe it. I’m honored.
These days I feel like I should be going for some kind of acting award. I don’t compare myself to those true to the art, but I certainly feel like I am “on” most of my waking hours. You know what I mean. If you have a chronic illness, you know exactly what I mean. Let’s see… when someone says to you, “How are you doing?”, what’s your response? Me? Well, there’s always the standard response:
“I‘m doing alright...” or I may say”I feel okay…” or
“I’m fine…” or sometimes I’ll say
“I’ll be alright…” or… or… the list goes on. All of which translates to… “I feel like crap, but I live to get through another day.“. I depress even myself when someone asks me the question. And, trust me, I’m not saying I don’t want folks to ask how I’m doing, it’s just I never know what to say. Honesty is not the best policy in this case. I don’t really think people should have to hear my truth. In addition, I don’t want to say out loud multiple times a day that I feel like crap. I imagine it would only make me feel worse mentally. Which leads me back to my original statement. I think I am pretty good at acting. Most of us don’t want the whole world to know how much pain we are in or even that we are in pain at all. To get through the day, we have to put on a happy face so folk see us as functioning people and not just people with pain or disabilities. I don’t want to be the one that people look at and feel sorry for. I want to be the one that is looked at as strong and responsible, caring and able.
Sometimes I think I am so good at this acting stuff, that I convince even myself nothing’s wrong… I can literally act myself into thinking there is nothing wrong with me. Until, of course, I try to live without paying attention to what my body/ mind are telling me. Those are the days that reality slaps me in the face, basically saying, “WAKE UP! Stop just thinking about right now”. I feel like I have to go through the acceptance process of all my medical conditions at least once or twice a week. I know what the diagnosis is (trust me it’s difficult not to know), but when you act like your are completely fine… you act like you are completely fine. If I acted like I was fine while also managing all my medical conditions better, I’d actually be almost fine!
So! What has happened since the last time I blogged?
Damn. Damn… DAMN! I have had tests, more MRI’s, CAT scans, many appts… I did the Prednisone thing. This was the first recommendation to see if it would alleviate the pressure/ pain in my neck (reduces the inflammation). That actually really helped the pain for a few days. I was like a new person, literally tons of focus and energy. It was crazy how good I felt… for a FEW days. Awesome, very much like when I had a epidural while in labor with my son, which literally worked for ONE contraction. There really is nothing worse than feeling the awesomeness of no pain… when you should be in a lot of pain. Only to have that awesome feeling snapped right out of your reach in an instant. So! The Prednisone worked for a few days and then slowly stopped working, but I did end up with the bonus of more pounds on my body. JUST WHAT I NEEDED! yay… (she said super quietly with a lot of sarcasm…)
I had many discussions with the spine surgeon and two separate neurologists and have come to the conclusion that surgery is definitely in my future. With that in mind, I needed a solution for this tremor. None of us want my head to be shaking just out of surgery… that would seriously dampen the entire post-surgical bliss that I’m looking forward to. So! I started a new med. I had a handful to choose from and I made a decision and tried the only one that seemed like it might work with the least amount of side effects (or cause me to have to change my antidepressant)… Well, again, it was good… at first. And then… the side effects kicked in. The kick was a big one. My depression tanked. Tanked as in I fell into that big f’d up black hole. You know, the one that has no bottom and there’s no light at the top to give me hope. It took me a bit to see what was going on. By the time I realized what was happening, I was in too deep. That feeling of hopelessness and despair completely overwhelmed me. I started to back off the meds and ultimately decided I would stop completely. The thoughts going through my head are not worth the benefit of the relief from the tremor. Which sadly, the med did stop the tremor… It’s the choice of bad or deep black hole I’ll take bad any day. That is the end of meds to address my tremor (for now).
So for the last few weeks I’ve been a mess. Working has been like walking through wet cement for hours. (I’m full of analogies today) Attempting to focus with this mental state and my pain levels going through the roof has not been fun. But! I made it through. Today was my first day off the meds and I believe in a couple of weeks I’ll feel much better.
In the meantime, I prepare for my surgery. The mental and physical preparation will take a while for me.
I know God is on my side. With all this stuff standing in front and on top of me, I am blessed with the most wonderful family and friends who stand beside me and on many days who hold me up. I have a job that allows me to work from home, which in turn makes me feel like I am contributing and adding value both at work and at home. I have a plan to address the neck pain/ weakness in my arms and legs. The future is not grey and bleak, it is in fact looking okay. I may be in pain every day and I may suffer from severe depression from time to time, but I am blessed. I do not take the great things in my life for granted.
We just celebrated my daughter’s 16th bday. A celebration that would not have been a success without the help from those closest to me. From the hand-made decorations, to the made from scratch awesome tie dye yummy cake and caterpillar cupcakes, to the candy leis to the cotton candy machine to the best food in the world… this celebration was one to remember… and in less than two months, my son graduates from college. You were all with me when he graduated from high school! Every day is a blessing.
40,000+ visits later, my blog is still going strong because of the support from all of you. I say it again. I am blessed. Thank you for taking the time to read this and leaving your comments and sharing your personal experiences with me. It means a lot to me.
You all win the award for best acting! You do it every day… all day long. It’s not a good or bad thing, it’s just what we do.
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.
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.
This past week-end, I did something unbelievable… I went to see a movie with my mom and my daughter. I never imagined this was a possibility. I can’t remember the last time I went to see a movie with my mom. Her vision has declined over the years and she has never been a “go to the movie” type of person (unless we go WAY back to the drive-in days). So I’m sitting at dinner with my family last week and I hear my mom and Kiyomi talking… my mother is telling Kiyomi she’d go see this movie with her… I thought I was hearing things. No WAY did she just tell Kiyomi she’d go INSIDE a movie theatre and watch a movie. What? I stopped asking to see a movie with her because she was always worried about not being able to see. This was an opportunity I was not going to miss out on.
So … on Sunday, my girlfriend, my mom, my daughter and I all went to see Frozen. I honestly had no idea what I had signed up for. I hadn’t really seen previews and had no clue what the movie was about. I was really nervous about getting my mom inside the theatre and seated so we went early (or we attempted to go early but the theatre box office and doors were very late opening). The theatre near my parent’s house was perfect. In fact everything worked out perfect! The handicap parking was literally yards from the entrance… the handicap seating was perfect… the popcorn was awesomely delicious… I was sitting behind her and Kiyomi during the movie and I would keep looking to make sure she was okay… it was a little emotional, if I’m being honest (which I always am when I blog!). Seeing my mom and Kiyomi sitting next to each other watching the movie was a beautiful thing. Just seeing my mom enjoying herself as she watched the movie… well, like I said, I was a little emotional. I wanted to bottle it up so I could remember the moment… the feeling… forever. AND let me tell you what made that day so… welllll… the only word that describes it is… PERFECT! My mom said it was the best movie she had ever seen (it was a very good movie). There’s nothing more satisfying (or emotional) than seeing my mom happy.
That day made me start to think… My life has been crazy. There’s no doubt I need to get back to a healthier/ happier me. It’s so easy to get caught up in the wrong priorities… to forget what’s important in life. And, not just what’s important, but what is a privilege and a blessing. Being able to spend time with my parents is definitely that. Having my children spend time with their extended family is a blessing. The fact my brother and my father rarely miss any soccer games and they make our kids a priority… we are blessed.
2014 has just begun… one of my goals for this year is to take 30 seconds out of each hour to just stop and remember what I am thankful for in that moment. It’s not easy to remember to do, but I have the rest of this year to be successful!
I hope that you all have many blessings in your life and that you are making positive changes to make you a healthier and happier person. One day at a time, right? Or for those of us that are dealing with chronic pain… one minute, one hour at a time. Don’t let stuff get you down, look for the good and let go of the bad.
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!
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!
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. Itransferred 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 wholelot 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.
What the hell is going on?!! I ask myself this every day. It’s a question that has a bullshit answer. You know exactly what I mean… you’ve been here. I’ll tell you what happened. July 5th I went into a flare. Since that day my pain levels, fibro crap and depression have gotten worse with each day. I haven’t been in a flare like this for years. This shit makes me angry. I thought these days were behind me. I mean, seriously… years have gone by… YEARS!! (do you hear me yelling?)… years without this kind of flare. I’m back to shuffling around the house like Tim Conway in the Carol Burnett show (for those of you older folks that remember). I feel like I’m falling in slow motion and can’t grab anything to stop the fall.
The MOST awesome? My son graduated from UC Santa Barbara. The graduation was wonderful and I couldn’t be prouder of him. He’s overcome a lot to get to this point in his life. If you’ve been following me for a while, you’ve been there through his high school year graduation and now this momentous occasion. It’s amazing. One of the proudest moments in my life as a parent. We have had some of the best conversations in the last six months. This child is no longer a child. He has definitely grown into this awesome, amazing, smart (so damn smart!), caring, loving, beautiful man. It was a blessing that I was physically able to go to his graduation and get through this amazing weekend with family and friends. And the best part? My son is home for good and we are all together as a family again.
“I’ll be alright…” or… or… the list goes on. All of which translates to… “I feel like crap, but I live to get through another day.“. I depress even myself when someone asks me the question. And, trust me, I’m not saying I don’t want folks to ask how I’m doing, it’s just I never know what to say. Honesty is not the best policy in this case. I don’t really think people should have to hear my truth. In addition, I don’t want to say out loud multiple times a day that I feel like crap. I imagine it would only make me feel worse mentally. Which leads me back to my original statement. I think I am pretty good at acting. Most of us don’t want the whole world to know how much pain we are in or even that we are in pain at all. To get through the day, we have to put on a happy face so folk see us as functioning people and not just people with pain or disabilities. I don’t want to be the one that people look at and feel sorry for. I want to be the one that is looked at as strong and responsible, caring and able.
my foggy brain 