Happy Fibromyalgia Awareness Day!

Today is Fibromyalgia Awareness Day. For me, it’s a reminder of how far I have come since I was diagnosed. From that day (let’s call it D-Day) many years ago to today the amount of resources and information available at your fingertips is infinitely better. I remember going to the bookstore every month or two and literally purchasing every book there was available on Fibromyalgia… I couldn’t get enough information. These days I am not such a voracious reader of the subject. I just live my life to the best of my ability… it’s a part of me. I realize I will have this for the rest of my life and for the most part I have accepted it.

There have been days (like yesterday) where I get so frustrated I want to walk away from this life and just keep walking into the sunset never to return. Seriously?? How far would I get? After about 1000 steps I’d have to call someone to come pick me up and ask them to drive me into the sunset… which defeats the purpose… and takes away all the dramatic effect. But you get it. It’s like Day 90 of feeling like shit every other day.

Disney-Pixar-Inside-OutHmmmmm… could it be the stress? There is a lot of that to go around. I know what I should (and shouldn’t) be doing. I have all the information and tools at my fingertips but I am struggling with the motivation. I have no energy… did you see that movie Inside Out? Sadness has taken over… Anger and Fear are fighting to take over. Where the hell is Joy?? She needs to find her strength and come out of hiding.

There’s so much going on in my head all the time I can’t remember having a moment of quiet. I know part of my frustration these day is the constant high pitch tone that never goes away. I lie down at night and there it is. I wake up in the morning and it’s like “Good MornEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE…” and it never gets to the ‘NG’.  I’m like, JUST FINISH THE DAMN WORD! How hard is it? Good MornING, say it with me… GOOD MORN-ING!!! And then I realize I am yelling at myself… in my head… and I have only just woke up. Wow. And for a few moments Disgust walks in and just shakes her head. But this high pitch sound… it’s stuck, like a needle skipping on a record player (remember those? God I miss my old stereo with a record player and tape deck!). If I could just pick up the damn needle and stop the madness… andddddd let’s give a warm welcome to the latest diagnosis to join my life… Tinnitus!! (I really tried to slam the door in the face of this most recent guest, but Tinnitus just planted themselves on the doorstep and wouldn’t leave… RUDE!)

When I got out of bed this morning… that’s the other thing, when did 5am become my normal wake up time? Geez how easily am I distracted this morning!! Anyway… when I got out of bed this morning I thought about how it’s Fibromyalgia Awareness Day and I thought it’d be a great day to remind folks of the Tools and Resources out there. There are a lot and I quite honestly haven’t searched for new sites lately… but here’s a reminder to check out what I have found and feel free to share what your favorites are. I also have some tools that I have created that you are welcome to use:

It is a day of celebration! Fibromyalgia can be overcome… it’s frustrating and obviously very painful, but it’s not a death sentence. Do better than me! Eat right, exercise your body and mind and most important… laugh, smile… find your blessings throughout your day and be grateful. Today I am grateful that the medical field is more accepting that Fibromyalgia should be treated by a medical doctor, not a psychiatrist. It’s not in your head people, this is real. I am grateful for my family, my friends and the wonderful weather. I am grateful for those of you that have taken the time to read my post today.

I wish you all a pain free day. Be blessed!

Gentle hug,

Tamiko

Be Blessed… Accepting Your Limitations

Soooooooo…. another doctor’s appointment come and gone and once again I left the office with no answers. Today I went to the audiologist to see if there was any reason why I have this constant high pitch tone flowing through my head 24×7. OF COURSE I waited many, many months before going in… and OF COURSE I left with the same answers I have 90% of the time I go into the doctor’s office… and that is OF COURSE — NO ANSWERS!! Oh wait, I did get one answer… a referral back to my PCP. Woohoo!! Well, let me find the positive in this. I do not have any loss of hearing. And trust me, no sarcasm… I do appreciate that something is working the way it is supposed to! There’s a positive for every negative, right?

What a time in our lives… our daughter is graduating from high school in about six weeks. Damn. SIX WEEKS!! (I have no idea why I am using so many caps, I’m really not trying to yell at you.) I forget how much is involved with these graduations. We are in the process of selecting a college. When I say “we”, I actually mean “she” with a little help from us. She just had her senior prom… she’s planning a senior trip… we are planning her graduation party… senior pictures… college commitment/ housing/ budgeting… CALGONNNNNNNNNNNNNNN take me AWAYYYYYY!!!!!! (only those of you that are on the older side will remember that commercial… here’s a link for your viewing pleasure.)

IMG_4270It’s times like this when I tend to forget I am not physically able to do it all. For every one busy day, I tend to have two days where I’m down. Lately it’s been a lot more down days, than able days. We drove up to Eugene, OR to check out the University of Oregon. An amazing campus. The drive up was very nice, but sitting in the car is not easy for long periods of time. We knew it was going to be tough so we made several stops along the way… we took our time. Accepting my limitations in this instance made all the difference. When we arrived in Eugene, I was doing okay. Whew! The next day, however, was a bit trickier. We had scheduled a tour of the campus for 10:00am. We arrived early so we wouldn’t be stressed out, again planning in advance… what we couldn’t plan for was how fast the walking tour was. This tour guide was very enthusiastic. To make things even more challenging it was very cold outside. So just picture a very brisk walk for 90 minutes in and out of buildings, up and down stairs and in the cold… This is where I tend to not speak up. I don’t want to be a burden or slow a group down so I stayed the course and I made it through. I was really proud that I made it. The rest of that day IMG_9659and the next morning… MAN DOWNNNN!!!! What can I say? I did my best and we actually accomplished everything we wanted to. We just did it in our own time and tried not to stress. We made it home and I was able to rest up for a couple days before going back to work today.

I know there’s a lot coming in the next couple months. I just have to keep reminding myself that it’s okay to ask for help and it’s okay if everything is not 100% perfect. It will be the best we have to offer and as far as everyone is concerned it will still be great! The thing is… it’s not about me. It’s so easy sometimes to just get all engrossed in how crappy I feel, I have to remind myself that it really is NOT about me 99% of the time. It helps to remember that although I am in pain and struggling with depression/anxiety… it could always be worse. Like I could be losing my hearing!

It really has been a rough year. I have struggled with my depression/anxiety a lot this year. For one reason or another, my flares are closer and closer together and they seem to last longer. I know I can do better with taking care of myself, but as you all know, it’s damn frustrating living like this. To have a week without any kind of pain would be amazing. To be able to take time off work for vacation and not be sick… what a concept!

Listen, I realize each day is a challenge living with Fibromyalgia and Depression and Anxiety and Essential Tremor and GERD and ADD and… oh wait, sorry, lost my train of thought. Anyway! I realize every day is a challenge living with all the crap we live with, but we just have to remind ourselves to accept our limitations and remind ourselves of the blessings we have each day.

Which leads me to … I am still journaling every day! I haven’t missed a day without snapping a picture or journaling. There have been a few days where I have just put a picture because I was too sick to do any more than that… but I have kept up the practice of journaling every day! Find something that helps you think about the positive in your life. As I look back through the pictures I have snapped since the first of the year, I can’t help but smile.

Thank you so much for stopping by and please have a blessed day!

Gently hugz…

Tamiko

 

Welcome 2016!! Hello Happiness!!

 

Stress takes a toll… relationships… health… sleep… diet… PAIN!! Stress takes a toll.

What do you do when you are stressed? Me? Some days I manage well… other days? Not so much…

2015 was full… I mean FULL of stress and challenging times on a personal level (honestly… what would it be if not personal)? I can take classes, read  books, gather tips and best practices for managing stress… but the problem is, as many of you well know… you actually have to PRACTICE those things that one learns. WTH? No magic pill? No snap of my fingers? No twitch of my nose? Damn! I actually have to work to make it WORK.

Every year I write down my goals… each year, kinda the same thing. I want this year to be different. I want this year to be better. I will do better. I will set and achieve my goals. No more, “I will lose 50 pounds in one month.” … maybe something like, “I will exercise once a week.“… (damn, even that sounds hard to me… Crazy!! Full confession… I don’t exercise at all right now, so exercising once a week is going to be very challenging). Maybe I will set goals to achieve each month. For examplgoalschangesm.jpge, in January I could… eat less sugar! Hmmmm I need specific achievable goals… so in January I will reduce my sugar intake by not eating sugar 1 day in week 1, 2 days in week 2, 3 days in week 3… that will be damn hard, but changing fro
m bad to good habits isn’t meant to be easy. Accountability! (I really need to figure out a better word to use as my mantra.) Most important…  I will do my best to be happy about small successes.

That’s a challenge in itself. Being happy. For those of you with depression, you know exactly what I mean. Happiness does not come naturally for me, it requires me to take meds and accept things and not be sad or down about shit, not get upset – I am super envious of people who are able to “take things in stride”. What the hell is that anyway? How does one do that? What’s the key to happiness? I’m quite sure it all goes back to exercise, eating right and acceptance. It’s everything. These three things solve stress, pain, depression, anxiety, self-confidence, self-esteem… the list is infinite! These three things. Exercise. Diet. Acceptance. Three words. How can there be so much behind three words?

Wouldn’t it be awesome if I had one of those believe it and you will do it minds? Well… I don’t. I have one of those… “Jussssssttttt one more See’s candy… I deserve it!” minds. “CALLING ALL SELF CONTROL TO THE FRONT OF MY MIND!! … PLEASE … COME TO THE FRONT OF MY MIND!!” Wait.. what? It’s gone in hiding? Can’t find it? Damn thing is never around when I need it. I really have to work on that. Self Control has to replace “I deserve it!” as my BFF… that’s going to be a hard one. My current “I deserve it!” BFF has a box of See’s candy in one hand with a Nordstrom bag on her shoulder and the remote control to the TV in the back pocket and of course, an “I will start tomorrow on… (you fill in the blank)” attitude! Replacing her is going to be tough… I mean I have to kick her to the curb HARD to make this work.

Well welcome Self Control to 2016 and g’bye “I deserve it!“!

I hope you are saying hello to all good things this year and g’bye to the bad.

A big gentle hug and I wish you all the happiness, good fortune and pain-free/ improved health in 2016!!

I leave you with one of my favorite pictures of 2015… Three generations! Happy new year!!

DSC_0139.JPG

Tamiko

How Honest Are You?

… vent, vent vent… complain, complain, complain… this is how i feel. I feel like everyday I say the same damn thing. It goes something like this…

girl-150102_640“I am not feeling well”

I am exhausted

I am in a lot of pain

That food was so good!” … and an hour later… “That food made me really sick

I don’t have the energy for that

My legs aren’t working” … “My hands are killing me” … “I have a migraine” … ” …

I can go on and on and literally ON! I know a lot of you folks out there feel like every time you describe to your family or those closest to you how you are feeling … it’s like a broken record. Should we lie? If I don’t tell the truth people assume that I’m feeling perfectly fine and then expectations change. The truth of the matter is, just as quickly as I forget what pain feels like, others forget what me in pain looks like. And honestly… be super-duper honest… is there ever a moment in the day when you don’t feel any pain? For me, the answer is an adamant “NO!” (I’m really not shouting at you… just making a point). So if I go with my baseline pain level and call that “fine” and then just speak to my worse than baseline symptoms, is that better? And better for who? Me? My family?

What prompted all this? Well… I’m not sure. I think it’s because I have been in a flare for months now. I’m not sure how long because at the beginning of this calendar year I, for no rhyme or reason, stopped using my calendar. I had a calendar last year that I wrote all my health stuff in… this year I just haven’t had the energy. I’m not even sure it’s a lack of energy thing as much as it is I got tired of thinking about everything. I’ll be honest… I’m kind of a mess right now. But, as I was saying, I feel like I’ve been flaring for months. I don’t recall being in a flare for this long in years. It’s just not calming down.

So, is it a burden for my family and friends to carry if I am honest about how I am feeling or is it a burden for me to keep the truth to myself? What’s the balance and where do you draw the line? I’ll tell you what. I’m tired. I’m tired of feeling like shit. I’m tired of being depressed. I’m tired of never being able to say… “I feel GREAT!”. I’m just flippin’ tired.

And now that I have vented and complained what the hell am I going to do about it? Ummmmmmmmmmmmmmm, can this be one of those days where I just vent and complain? Do we get those days? I think if you talked to my husband he’d tell you I definitely have those days… but that’s not what I want to do with you folks out there who have chosen to follow my blog. We all have these shitty days, but to just vent and complain brings everyone down including ourselves. How do you get out of the pit of pain and depression? I believe you have to be kind to yourself. Acknowledge that you will have bad days and today is one of them. Tomorrow is a new day. It’s a new opportunity to have a less painful day. A less down day… one that could be a happy day. It sounds strange, but in our world of chronic pain – pain and happy go together. You cannot let the pain take your happiness away. If you don’t allow yourself to be happy while in pain… the alternative is not a life worth living.

IMG_0379Yesterday was a pain and happy day. I was having some issues walking, but I was determined… I couldn’t let that ruin our family day. We started the morning out playing soccer with my exercise ball in our bedroom (don’t tell the kids) – I don’t think I’ve laughed that hard in a long time (let’s just say we were almost in the market for a new tv)… followed by an awesome breakfast the kids made for Father’s Day and then we all piled in the car and spent the day together. A day which included walking… which was extremely painful. In this instance I was not about to let the pain get in the way of everyone’s happiness and just as important mine. We had a beautiful day which I managed with pain meds, laughter, joy and a lot of positive self-talk. A pain and happy day.

So back to my question… how honest should we be? Maybe I will try another approach. Maybe I’ll use the baseline approach and if I’m feeling my normal pain, I’ll say, “I’m doing good!”… I might even try to start saying, “I’m doing great!”. If I’m feeling worse than normal, I can just say “It’s not a great day”.

Our lives are not predictable. The only thing we know for sure is that there is going to be pain, we are going to be uncomfortable. We are going to have days where we want to scream and shout, stomp our feet (although that would cause more pain), and cry… but after you realize your life could be a lot worse and that you are surrounded by the best family and friends anyone could ask for… you realize how blessed you are. Today may be hard… but there’s always tomorrow.

Thanks for stopping by! I love hearing from you either by email or comments.

Stay cool and relax… Gentle hugz!

Tamiko

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…

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.

schlaflos

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!!

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-001I’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