How do you recover? I never seem to ask myself this question. I know I should plan for pain. I know when I’m going to be in more pain than normal based on my upcoming activities. But for the most part I have an attitude of “I am going to enjoy myself and deal with the consequences after...” It may not be the smartest approach, but I tell my husband all the time… if I stop doing things because of my pain, I’ll never do anything! Pace yourself… we hear this all the time. Stay away from stress… another major tip we hear… but, honestly, pacing myself stress me out!
In the last few months I have created my own awesomely good days… I have sewed with friends, went on vacation with my mom and daughter, surprised my dad with a party for his 80th birthday and watched my daughter prepare for her prom. After each big event it takes me weeks to recover. I do my best to pace myself and stay away from stress, but as you know… life happens.
Recovering from any activity that takes energy has to be balanced by down time. Throughout all those great events, I have endured the longest flare I’ve had in years. I have no idea what is going on, but for one reason or another my body decided it didn’t want to manage the pain efficiently. It just wanted to bein pain … every… single… day. If it’s not the pain from Fibromyalgia, it’s the pain from IBS. Thankfully, my depression has been somewhat under control.
If you ask yourself, is it worth it? As I know many of us do… on a regular basis… especially when in the midst of an ongoing flare. When it’s all said and done, the answer has to be a resounding “YES!”. There are nights when the pain from my day’s activity is so great, laying in bed is painful. My legs are throbbing from the inside out and my neck and shoulders hurt so bad even my skin hurts. I have taken more pain meds in the last few months than I have in years. It’s been the only way I am able to sleep… and let’s be honest, in the middle of a flare, who really gets good sleep? I generally wake up around 2 or 3 and end up reading until I can fall asleep again… and then wake up a few hours later. This does not make for good sleep.
I work full-time and I thank God every day that I am able to work from home. But… working from home means it’s really hard to call in sick. I mean you have to be pretty bad off to call in sick. At least I do. I feel bad if I have to stop working early because I am in too much pain. There have been many days where I’ve felt like I could have done a better job or worked a little harder, but due to this ongoing flare, work has been tough. On the plus side, since I have such a hard time sleeping, there have been more than a few days where I’ve started working between 4:30 and 5. Not only am I thankful that I am able to work from home, the folks I work with are extremely supportive and understanding. I couldn’t ask for a better working situation. I can’t even begin to imagine what it would be like if I wasn’t blessed with the work situation I am in.
In preparing for my daughter’s prom night, I had to leave abruptly from her make up appointment because I all of a sudden felt really sick and could not endure standing (or sitting) any longer. My husband picked me up, and as he drove me home I felt like a loser mom for missing out on even one part of this big day. I went home and laid down for 45 minutes so I could recover. There was literally NO WAY I was going to miss seeing her all dressed up with her date and friends. I was not going to miss the opportunity to take pictures at the park. I knew when I got home I was going to collapse… and I did. But it was worth it. I also realized that missing out on a small part of the day so I could enjoy the main event was something that I needed to do. It was a blessing that my cousin was at the appointment so I could leave. Recovery…
We surprised my dad for his 80th birthday 10 days ago. All the preparation and work towards the event was so worth it when he walked in the room and I saw his expression. At the end of the night when I got home, I literally crawled up my stairs to my room, took a bunch of pain meds and went to sleep. The next day was my daughter’s 17th birthday and I had family visiting from out-of-town… we all got together for a big breakfast at my folks house. Although I could barely walk, the pain was not going to win. We ended up creating more memories of fun and laughter as we ate great food and visited with each other. That day ended with a trip over the hill to Santa Cruz with my daughter and her friend for dinner to celebrate her birthday and watch the sun set. A perfect week-end.
I am determined to enjoy my life. How do I deal with the non-stop pain? How do I recover? I think about how blessed I am. I think about how much joy is in my life. I think about the look on my dad’s face when he walked into that room full of people who have loved him for decades. I think about how much laughter there was on vacation with my mom and daughter. I think about how damn beautiful my daughter looked on her prom night. What could stop me from enjoying these moments? Nothing! I cannot imagine missing these moments. I say screw you pain!!! (I could use more harsh words… but… that would be rude)
On this May 12th, Fibromyalgia Awareness Day… I say let your joy, laughter and blessings be your recovery. Enjoy life, don’t kill yourself doing it, but definitely don’t go the other extreme and stop living. You deserve better!
Before I say good-bye, I have to say how thankful I am to be recognized for the fourth year in a row as one of the top bloggers in Healthline’s 2015 Best Fibromyalgia Blogs. I am so proud to have made the list, it means a lot… and Congratulations to the other winners!!
Thanks for stopping by… I hope today was an awesome day for you!
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!!
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.
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.