enjoying life

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How do you Recover?

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 be in 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!!

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Thanks for stopping by… I hope today was an awesome day for you!

Tamiko

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No Pain… No… Fun?

My mind has all these thoughts flying around… I have started and stopped writing for the last couple weeks so many times, I’m not even sure what I’m trying to say. So I decided to do one of those “stream of consciousness” posts… whatever is on my mind I’m going to write about today. Reader beware… you’ve been warned. :)

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This amazing rag quilt was made for my daughter’s 16th birthday by my good friend at Williamsville Arts

In the last couple weeks I have learned how to sew… seriously. A very, very close friend came and stayed with me for a few days and she taught a few of us how to make rag quilts. It was the best time I’ve had in a long time. We literally got up in the morning and worked from morning until late at night. There was great food, great conversation and so much smiling and laughter in the room that it didn’t matter how much pain I was in. The pain was worth it! You’ve heard of, “No Pain, No Gain”… well I think my new saying is going to be, “No Pain, No Fun”. I’m good with that. I will endure the pain if it means I can spend time with friends and family and have a fun time. There may have been physical pain, but there was definitely no anxiety because it was just a small group of us, everyone is low maintenance and easy. Hanging out with no anxiety is an awesome thing. You know what I mean… you can be in a room full of people that you know and there’s still a level of anxiety that is hard to ignore. For me, crafting with friends is always such a great time. No depression… no anxiety… no grey clouds hanging over my head… perfection!

There was definitely pain. I was also able to get through the pain because I started and ended my day with my husband putting this Warming CBD Muscle Rub all over my neck, shoulders and back. I was asked to give it a try and I’ll tell you, this stuff is pretty awesome. Now every time I have significant pain, I put this stuff on and it really makes a difference. After having tried so many things for my pain, I’m pretty hesitant to try anything new… now my husband is asking me when I’m going to get more. This is the first time in a long time I’ve used something this much. The sewing week-end was a great test. Each morning and night I was in a pretty significant amount of pain. We were sitting in chairs in front of our sewing machines for hours and hours. I could barely move… If you are looking for something new and all natural to try, you should give it a try. The folks at the Fay Farm are very nice and I’m a believer now. I’m not getting anything out of recommending this… I just know that there have been many times that I wished someone would just tell me what worked/ didn’t work for them. I’m not really going to say what didn’t work because I don’t want to down anybody’s products (and honestly just because something doesn’t work for me doesn’t mean it it won’t work for someone else)… but I will share the stuff that works for me. Deal? Deal!

And can I just say that after this week-end of awesome fun and laughter… I went through the following week with some not so fun shit to deal with. Excuse my language. Let me tell you… and this is going to be TMI, but I can’t really tell the story without giving some details. Over my sewing week-end I noticed some bleeding, post-menopausal bleeding. I’m thinking, “No big deal…” When I ask my friends what they think… they are like, “You better call the doctor!” We all know how much fun going to the doctor is. Why not just make the appointment, walk out the house, stand outside for 15 minutes, come back in and say to yourself… “There’s nothing wrong with you, it’s just a side effect of the Fibromyalgia.” That’s pretty much how I feel everytime someone recommends I go to the doctor. Anyway! I made the appointment and went in and let me just say… I was perfectly calm… I will even say I was just going through the routine when the doctor says to me… “Well, I think we need to take a biopsy, we can do it now or you can make an appointment to come back. I generally tell my patients to take an Ibuprofen before doing a biopsy to help with the pain.” Ummmmmmmmmmmmmmm… queue laughing track. I literally asked her if the difference between me getting the biopsy now or later was taking some Ibuprofen and she said yes. Well considering Ibuprofen is like eating candy for me (a nasty tasting candy that you aren’t supposed to chew), I went through with the procedure. DAMN! DAMN! DAMN! That hurt. She was good, she talked me through it… but I was definitely not prepared for that kind of pain. While I’m sitting there eating my graham crackers and drinking the juice they gave me to bring my blood sugar back to normal, I tell the doctor that I am scheduled to travel and be out of town for a few days. She gets all hesitant and to make a long story short, she tells me she needs to be able to get a hold of me in case we need to make plans. I’m like, plans for what? I mean I am starting to freak out now. She’s hesitating with me and telling me that in case it’s cancer, she will need to get a hold of me. I’m sorry… “WHAT?” I came in here to hear you tell me that it’s no big deal, it’s just a side effect of Fibromyalgia and you are telling me it might be cancer? Not what I bargained for. So, needless to say I spent a few days mostly convinced nothing was wrong with me, but still slightly concerned I had cancer. Results came back benign but here’s where you actually want to walk away hearing that it’s just the Fibro. It really made me think. It’s the one and ONLY time I have ever actually wished a doctor would tell me my problem is not a problem that can be treated because it’s the Fibro or I would have even taken that look of “Why are you here, there’s nothing really wrong with you” that some doctors give when they don’t really believe Fibromyalgia is a real thing. Makes ya think, huh? Another lesson learned. I could have done without this lesson, thank you very much!

When did my kids grow up? I mean where was I when they became these young adults walking around the house? I am looking at my life and thinking I really am kinda pp,550x550hitting my mid-life (hahahaha! Hitting? How about hit awhile ago!). When is that mid-life crisis going to come? I’d like a tiny bit of warning because I’m already dealing with so much crazy… to add to it?? Please give me some warning!! I’ve always wanted a convertible… so that’s not really an indication. And honestly, I don’t want any specific anything so much that it screams, “I AM YOUNG AGAIN!”. What I really want most these days is to go to the beach for a couple weeks somewhere tropical and do nothing but read, lay in the shade, watch the sunrise and set… eat good food AND most important I’d really love while I’m on the flight over to this magical place to go through some kind of Bermuda (but not “the” Bermuda) Triangle that results in everyone becoming… let’s just say looking and feeling like their perfect weight/ size. Can I get that for my mid-life crisis? Where can I book this trip? I’ll take the pain (well I’ll take the pain as long as it doesn’t get any worse than it is now… always a caveat)… but like I was saying… I’ll take the pain for the beauty of a tropical beach, some great chick lit books, yummy food and of course the company of my husband! The having a great body part would just be over the top, but damn wouldn’t that be wonderful! I’d love to talk more about the weight thing… but that would just drag me down and it’s not worth getting depressed over – just these few words has affected my happy feeling… soooooooo STOP! Let’s go back to thinking about the beach.DSC_0092

I guess I will settle for a drive over to Santa Cruz for a day to watch the sunset (which by the way is pretty damn amazing!) every now and then. I just need it every few weeks so I can get to that zen feeling. You know that awareness when you look at the ocean that your life’s worries and challenges are so small against the vastness of the universe. That this world God created is awesome and how blessed we all are to live and how important it is to take advantage of our natural surroundings. I need the reminder to get out of my own head. It’s so easy to get caught up in work or just life in general that you forget to actually enjoy life.

So my moral for today is to enjoy your life. Find a way to balance the pain so you can have fun, laugh, love, feel the joy of living. If you don’t remember what that’s like, go outside and find some solitude at the beach, at a park, at a pond… in your backyard. Wherever you can go that will allow you to breathe in the fresh air, meditate for a bit, appreciate your surroundings and realize you are alive and you deserve to live a good life!!

Or… you can always sit down and write your own stream of consciousness… I promise you, you’ll feel better for it. Even if it doesn’t make sense to anyone else, it will make sense to you… and that’s really all that matters.

Thanks for stopping by and taking the time to read today. I wish you a relaxed morning, day, evening wherever you are.

Gentle Hugz.

Tamiko

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Make 2015 a Better Year!

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!

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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.

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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 sai101411_Rogue2_180d 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.

Thank you for stopping by!

Tamiko

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Great Fibromyalgia Resources Available!

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

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

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

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

Knowledge Center: Fibromyalgia, Chronic Pain & Depression

Here are some “best of” compilation pages:

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

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

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Life is Only Getting Better from this Point…

Lord have mercy!

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

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

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

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

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

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

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

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The picture I finally decided to go with…

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

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

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

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

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

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

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

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

Gently hugz!

Tamiko

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

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And the Acting Award Goes To…. YOU! Yes, You with the Chronic Pain!!

These days I feel like I should be going for some kind of acting award. I don’t compare myself to those true to the art, but I certainly feel like I am “on” most of my waking hours. You know what I mean. If you have a chronic illness, you know exactly what I mean. Let’s see… when someone says to you, “How are you doing?”, what’s your response? Me? Well, there’s always the standard response:

“I‘m doing alright...” or I may say”I feel okay…” or

“I’m fine…” or sometimes I’ll say

Theatre-stage-curtains-an-001“I’ll be alright…” or… or… the list goes on. All of which translates to… “I feel like crap, but I live to get through another day.“.  I depress even myself when someone asks me the question. And, trust me, I’m not saying I don’t want folks to ask how I’m doing, it’s just I never know what to say. Honesty is not the best policy in this case. I don’t really think people should have to hear my truth. In addition, I don’t want to say out loud multiple times a day that I feel like crap. I imagine it would only make me feel worse mentally. Which leads me back to my original statement. I think I am pretty  good at acting. Most of us don’t want the whole world to know how much pain we are in or even that we are in pain at all. To get through the day, we have to put on a happy face so folk see us as functioning people and not just people with pain or disabilities. I don’t want to be the one that people look at and feel sorry for. I want to be the one that is looked at as strong and responsible, caring and able.

Sometimes I think I am so good at this acting stuff, that I convince even myself nothing’s wrong… I can literally act myself into thinking there is nothing wrong with me. Until, of course, I try to live without paying attention to what my body/ mind are telling me. Those are the days that reality slaps me in the face, basically saying, “WAKE UP! Stop just thinking about right now”. I feel like I have to go through the acceptance process of all my medical conditions at least once or twice a week. I know what the diagnosis is (trust me it’s difficult not to know), but when you act like your are completely fine… you act like you are completely fine. If I acted like I was fine while also managing all my medical conditions better, I’d actually be almost fine!

So! What has happened since the last time I blogged?

Damn. Damn… DAMN! I have had tests, more MRI’s, CAT scans, many appts… I did the Prednisone thing. This was the first recommendation to see if it would alleviate the pressure/ pain in my neck (reduces the inflammation). That actually really helped the pain for a few days. I was like a new person, literally tons of focus and energy. It was crazy how good I felt… for a FEW days. Awesome, very much like when I had a epidural while in labor with my son, which literally worked for ONE contraction. There really is nothing worse than feeling the awesomeness of no pain… when you should be in a lot of pain. Only to have that awesome feeling snapped right out of your reach in an instant. So! The Prednisone worked for a few days and then slowly stopped working, but I did end up with the bonus of more pounds on my body. JUST WHAT I NEEDED! yay… (she said super quietly with a lot of sarcasm…)

I had many discussions with the spine surgeon and two separate neurologists and have come to the conclusion that surgery is definitely in my future. With that in mind, I needed a solution for this tremor. None of us want my head to be shaking just out of surgery… that would seriously dampen the entire post-surgical bliss that I’m looking forward to. So! I started a new med. I had a handful to choose from and I made a decision and tried the only one that seemed like it might work with the least amount of side effects (or cause me to have to change my antidepressant)… Well, again, it was good… at first. And then… the side effects kicked in. The kick was a big one. My depression tanked. Tanked as in I fell into that big f’d up black hole. You know, the one that has no bottom and there’s no light at the top to give me hope. It took me a bit to see what was going on. By the time I realized what was happening, I was in too deep. That feeling of hopelessness and despair completely overwhelmed me. I started to back off the meds and ultimately decided I would stop completely. The thoughts going through my head are not worth the benefit of the relief from the tremor. Which sadly, the med did stop the tremor… It’s the choice of bad or deep black hole I’ll take bad any day. That is the end of meds to address my tremor (for now).

So for the last few weeks I’ve been a mess. Working has been like walking through wet cement for hours. (I’m full of analogies today) Attempting to focus with this mental state and my pain levels going through the roof has not been fun. But! I made it through. Today was my first day off the meds and I believe in a couple of weeks I’ll feel much better.

In the meantime, I prepare for my surgery. The mental and physical preparation will take a while for me.

I know God is on my side. With all this stuff standing in front and on top of me, I am blessed with the most wonderful family and friends who stand beside me and on many days who hold me up. I have a job that allows me to work from home, which in turn makes me feel like I am contributing and adding value both at work and at home. I have a plan to address the neck pain/ weakness in my arms and legs. The future is not grey and bleak, it is in fact looking okay. I may be in pain every day and I may suffer from severe depression from time to time, but I am blessed. I do not take the great things in my life for granted.

DSC_0353We just celebrated my daughter’s 16th bday. A celebration that would not have been a success without the help from those closest to me. From the hand-made decorations, to the made from scratch awesome tie dye yummy cake and caterpillar cupcakes, to the candy leis to the cotton candy machine to the best food in the world… this celebration was one to remember… and in less than two months, my son graduates from college. You were all with me when he graduated from high school! Every day is a blessing.

40,000+ visits later, my blog is still going strong because of the support from all of you. I say it again. I am blessed. Thank you for taking the time to read this and leaving your comments and sharing your personal experiences with me. It means a lot to me.

You all win the award for best acting! You do it every day… all day long. It’s not a good or bad thing, it’s just what we do.

Gentle hugz!

Tamiko