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 moreday…”. 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.
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!
Happy December!!!!! Wow, where the heck has the time gone? For 11 months this little voice in my head said, “You need to start working on your Christmas list so you don’t have to rush in December and make yourself crazy and stressed out.“. I mean I honestly had this little voice talking to me almost every day… while at the same time this big booming voice responded with, “December is so far away you have plenty of time!“. Awesome. Well, guess who won. That big booming voice is so annoying.
It’s December and here I am, with a ton of projects to complete and… wellllllll….. I started three weeks ago. Brilliant! I mean, I haven’t been feeling great a lot this past year but that just goes without saying. How many really good days do we have on a continuous basis? I can usually get through a couple days and then I have a couple days that aren’t great. And seriously… it’s been a crazy year!
Kiyomi comes home today… YES! This kid away at college thing is great for them… freedom, free room and board, lots of free time… a lot of “free” going on. For me? Not so much FREE happening and my mini me is no longer here to hang out with and let’s be honest… she helps me with a lot. I am still trying to get used to the quiet. I am not sure I will ever stop missing the sounds of all the laughter from her and her friends. I can’t wait to hear those sounds again in the coming weeks!
The college experience hasn’t been all awesomeness. When your baby calls to tell you someone yelled an ugly racist name at her… on top of the national news of the law professor who dressed in black face and then the kids running around in black face on campus… it’s not so awesome. As a parent who is 9 1/2 hours away by car, you basically send an email to a bunch of people with “President” in the title and jump in the car and go support your baby. There’s nothing more important than ensuring your child feels safe… and IS safe! Well, the campus has a long way to go towards dealing with the race issues overall, but they have done an okay job helping Kiyomi. It takes time.
There’s that word again… time. Everything takes time. It’s so hard for someone like me who has the patience of … well I have no patience. I fully admit I have no patience and the anxiety doesn’t help at all. I’m not going to blame anxiety for all of it… I’m just going to blame anxiety for NOT MAKING IT EASIER! You know what I mean. Anxiety is always instigating, I swear it’s telling my body things like, “Make her sweat… good! Now make her heart race… great! Now let’s see…. what can we do to really make her want to scream at someone for making her stand in this long line… hmmmmmm, how about make her stomach hurt really bad!!! Yeah!!! That’s the one!! Perfection!“. Thank you Anxiety. After all that, if I fall into Anxiety’s trap (which really doesn’t happen very often) and kind of lose it, Depression pushes Anxiety away and stands tall. Depression is always lurking around. Depression likes to remove all the color from my life and turn everything grey. Ironic that I always tend to go for clothes with grey. You gotta love mental illness! Okay you don’t have to love it, but you do have to live with it… so learn how to manage it so it doesn’t take over your life and control it. I am learning every day.
I am all over the place this morning. What else is new? Don’t get me started with ADD… hahahahahaha! Squirrel!
Buddy’s To Do List
I really just wanted to say to all of you out there who are dealing with pain, wh\ether it’s physical or mental or like me both, the holidays are very difficult for us. Let’s get through it together. Give yourself a break. You may not get through your long ass to do list. Let folks know that their gifts may be late this year… that although you’d love to, you can’t join every event… that this year, you are doing your very best to make sure you are healthy and happy so you can enjoy the holidays with family and friends. We don’t want to just give presents, we want to be present. Being present is the hardest thing for me. My mind is always racing with all the things that I need to do… I’d love to actually be present in the moment and enjoy it. That’s my challenge for December.
I have made it this far. We made it through Kiyomi’s senior year in high school, the search for the perfect prom dress, the search for the perfect college, the search for the perfect dorm stuff and the start of the freshman year in college a state away. If I can make it through the search for a perfect prom dress, I believe I can make it through December. :)
I’m off to get ready for another beautiful day. Thank you for dropping by!
Do you remember playing these machines? this is what the inside of my head looks like!!
P.S. Okay I read through this a couple times and it truly is all over the place… in the end I will leave it as is. It will give you a tiny glimpse (that is such a strange word) of how my mind works. It’s like a pinball bouncing around from thought to thought… and as a matter of fact it’s already moved on to stressing out about needing to pack for this business trip I’m leaving for in the morning. Oh yeah! Did i mention that I have to travel to the east coast for business for five days? Well, I’ll leave that little piece of information for the next time we meet.
First things first… Happy 2015!! I bet we can all look back on 2014 and… well… sigh. This can be a sigh of happiness, sadness, relief.. or just a sign that we are still breathing. 2014 was a heck of a year. One thing I know for sure… 2015 is going to be better!
My 2014 memories/ 2015 goals project
I had a new year’s resolution in 2014 that I would blog at least once a month. Fail. I had 10 goals that I outlined at the beginning of the year as part of my annual family project. Let’s just say that I believe I achieved two of those goals. While we worked on our project this year I paid more attention to identifying achievable goals. I didn’t do the copy/ paste/ then change the words goals that I have sometimes been setting in the past. This year I want to be able to say I accomplished at least half of my goals. (I will be honest and say I did keep the “finish resume” goal that I think has been on my list for the past 10 years. This year I am determined to achieve this goal!). To the right is a little picture of my completed project. I really look forward to doing this every year. As the kids get older, it amazes me that they are still willing to do this. In fact, it feels like they are more willing now than they were in the younger years. We added my god-daughter in the mix this year and we had a day full of love and laughter. I can’t think of a better way to start 2015.
My daughter’s rag quilt…
While preparing for my project, I thought about this past year and the memories I will cherish… my son graduating from UC Santa Barbara, both the kids getting their driver’s license, going to the movies with my mom, my daughter’s sweet 16, going to Utah to see my dad present his experience in the Japanese internment camp at Weber State and visiting Topaz with his friends… these are all memories that I hope I remember forever. There are also the memories that will stay with me because of the challenge to stay positive in the face of difficult times… supporting my friend when her mom passed away, my mom’s frustrations with her health, friends in the hospital… me in the hospital. Even with the challenges, there’s always the positive. I will forever cherish the incredibly thoughtful gift my beautiful friend gave to my son as a graduation gift. She took my son’s soccer jerseys from the many years he played and made the most amazing quilt. I took this queen sized quilt and made it a part of my project this year. You can see I printed the picture of his quilt in black and white and added some color to parts of the picture for texture… in addition to this quilt, she also made my daughter and I rag quilts last year. I know I’ve said it many times before… and I will continue to say it… I am so so SO blessed to have such wonderful, supportive, loving family and friends in my life.
I didn’t set a goal for the number of times I would blog in 2015 on purpose… writing my blog does not always come easy. My husband has this very strong belief that I should write more. I love the strong support he always gives me… but I value your time as readers so I am… wait… stop. Let me invite you into my mind for a moment… I had an ADD moment while writing this… I am pretty sure that just typing the word “blog” twice in this paragraph kicked my brain into thinking… “It’s the beginning of a new year, I am going to change the theme on my blog…”. As you can well imagine, this thought led me to spending hours browsing the WordPress themes and then I actually tried one on for size and didn’t like it… activating the new theme and going back to my original theme completely screwed up my blog so I then had to spend time fixing it back to how I wanted it… I guess that lasted longer than just a moment. It doesn’t stop there friends… while I am going through the themes, I see all these photography friendly themes and I think to myself… “I really need to get my pictures organized…”. Just as I’m about to open up my iPhoto library I pull myself out of the vortex… before my brain keeps going and going and going and… SNAP! I’m back. Damn. AS I WAS SAYING!! Okay, breathe… as I was saying, I value your time as readers (which isn’t actually evident in this particular paragraph)… I really do value your time as readers (now I’ve said it three times so you really should believe me). Getting back on track… you are all important to me and I want to stay true to myself. I have to be in the right state of mind to write. That’s really what it comes down to. I want to spend my time focused… scratch that (I want to be focused but I know my limits!)… I have to be able to set aside a good amount of time to write something that is meaningful to me. It usually takes me hours to write one post. I write, review, re-write, review, re-write… you get it. I’m sure those of you that have your own blogs do the same thing. It’s keeping that balance while sharing my experiences between honesty and positivity. I never want to bring you down. Our bodies and minds do that already. If you are taking the time to visit my blog, I want you to laugh, get uplifted and most of all feel like you are not alone.
Fibromyalgia is such a frustrating and sneaky disorder (I always want to call it a disease but I know that’s not right… but at the same time disorder just doesn’t work for me)… anyway this shit makes me feel like a hypochondriac. I went to the Podiatrist for my foot because I couldn’t walk on it… he gave me a boot, I bought 3 pairs of expensive shoes and weeks later… the pain has moved on to somewhere else in my body. I get this weird feeling like a bee is continually stinging me in the back of my neck… is it real or fake? I go some days feeling like I can climb Mt. Everest (okay maybe just climb a small hill) and other days I can barely get out of bed. I can go weeks having mostly good days and then boom! flare. I guess what I’m saying is that I have to keep reminding myself that my body forgets what pain feels like as soon as it’s gone (even if for a brief moment). I question my sanity… a lot. I feel like I can never say I am feeling good because I’m afraid people are going to think I’m cured… that nothing is really wrong with me. I’ve never really said that out loud. It sucks to always feel so guarded about your health. I think we need to feel safe in expressing how we truly feel without worrying about the future repercussions. We don’t want to have to “justify” or explain our pain. It just is what it is. Some days are good and some days are bad. We need to be able to enjoy our good days to the fullest and not worry about when the next bad day is coming. Right? Right! I think the only person getting in my way at the moment… is me.
I said that all that because over the holidays, like every year I go, go, go to get the house ready, get the gifts purchased and wrapped and make my annual calendars. For the first time ever I didn’t scrapbook the calendar pages. I created digital calendars. It was really difficult for me to let that go and accept that there was just no way I was going to be able to get the calendars done. I didn’t have enough time and I didn’t have the energy. I felt like I should have been able to do it… but my body said… well I think it shouted, “NO!”. So… I listened. I accepted that I do have the many disorders/ conditions/ diseases that are on my medical chart and I gave myself a break. Even on the days I felt good, I knew I would still experience pain – that although it’s not always present, it’s somewhere lurking like a stalker. I don’t want to be the dumbass that is alone in the dark, saying “Come out, come out, wherever you are….”, I’m happy to let it lurk. Those are the folks in the scary movie that always get killed off first. I know it’s there… I’m going to do my damnedest to keep ahead of it. It’s not going to kill my spirit.
So back to my goals… I am going to keep that pain behind me as much as I can, both physical and mental. I’m going to work harder to take better care of my body and mind in 2015. I hope that you take the time to set some goals for yourself. Be kind and honest – set goals that you can achieve based on the reality of your health. Say it out loud… “2015 is going to be a great year!”… and it will.
I wish you all a healthy, pain-free 2015 sharing lots of love and laughter with your family and friends.
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.
Back 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.
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.
Day 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.
PS. Did I mention… I officially started menopause this month. Watch out family, here I come!!
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.
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.
Included in the workbook:
Wellness Wheel: tool used to help you discover opportunities for an improved quality of life and create goals based on those areas.
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.
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.
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.
Reference Information: information to help you better understand how to use the daily worksheets.
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.
My Priorities for Today…: worksheet to document your personal and work priorities on a daily basis.
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.