Even in the Midst of Your Worst Flare… Find the Positive!

0What 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.

  • Kadar's Gradation - UCSB  -  108 - 2014-06-15The 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.

Gentle hugz (especially today! :)

Tamiko

 

My Foggy Brain… Awarded Healthline’s Best Fibromyalgia Blog of the Year Award!!

It’s an amazing honor. I checked my blog over the week-end and I noticed my stats were off the charts… My initial thought was that the spam was completely out of control. As I took a closer look at the referrals,  I realized that http://www.healthline.com awarded my blog one of the best of 2014… for the 3RD YEAR IN A ROW!!!! WOOHOO!!!! It’s awesome. It’s amazing. It’s super cool. It’s so many things to me, I can’t believe it. I’m honored.

Please take a moment to visit all the blogs awarded this year: http://www.healthline.com/health-slideshow/best-fibromyalgia-blogs#1

Thank you for supporting me all these years.

15 Best Fibromyalgia Blogs of the Year

15 Best Fibromyalgia Blogs of the Year

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

Nothing Like Aging… A New Day… A New Diagnosis

aging

Ten years ago, when I was just a youngster… ummmmmmm RIGHT! Well, let’s just say I was younger than I am today. I strongly believed that aging was no big deal. I couldn’t understand why people dreaded getting older, this never-ending search for the fountain of youth. Today… I understand. As I get older, the days are not necessarily getting brighter or lighter or easier or more relaxing or… geez, I’m depressing myself.

Let me help you understand what I am feeling, I’m sure it’s not that foreign to many of you. Over the course of the last decade I have lost family, friends, and bits of myself. My fear that I will lose more family and friends is greater now than ever before. I also fear losing myself. To clarify, losing my ability to do things on my own (not that I do that much on my own these days), but seriously… physically taking care of myself, my sanity, the everyday things that a lot of people take for granted. It’s pretty frightening.

I look back a year ago when I was walking miles daily and then I look at today when I can barely walk to the car. There is a reason for the change… let’s just say that I have been diagnosed with yet another flipping irreversible condition. Cervical Spinal Stenosis. Yes ladies and gentlemen, it’s true, the hits keep coming! I have had two MRI’s in the past few weeks, 3 appointments with a Neurologist and the “what’s next?” question is heavy in the air in my house. Let me just say… a few weeks ago, I did not start my day saying… “I’m going to go in to ask my doctor, YET AGAIN, about the constant pain in my neck or the fact that I’m super weak.” We all know what happens when we do that… the “You have Fibromyalgia” card gets pulled out. I made an appointment with my primary care physician to check my tremor. It’s really been bothering me so I decided to re-confirm the diagnosis and look into treatment. I was quickly referred to the neurologist.

My appointment with the neurologist was one of the best appointments I have had in a long time. We started talking about my tremor and ended up going off into a completely different direction. This doctor spent an hour with me. An hour. That is almost unbelievable to me… and she’s a specialist doctor! I believe that she understood right away that I walked into her office as an informed patient. I knew what medications addressed Essential Tremor and I knew which ones I was willing to try and which ones I wasn’t (based on interactions with what I am already taking). As soon as she started to take a look at me, she did a bunch of strength tests on my arms, wrists, legs, ankles… had me stand up… asked me a ton of questions and did all the tests over again. That’s when she said she wanted me to go in for an MRI. She had read my medical history and noticed I had been diagnosed with Degenerative Disc Disease years ago and wanted to see what my spine looked like today. She wasn’t questioning my Fibromyalgia diagnosis but she felt like something else was going on to cause the weakness in my limbs.

To cut this story short… I went back, she showed me my MRI results and it’s not a great picture. That’s when she asked me to go back for another MRI, which by the way, have I told you how claustrophobic I am? Lord have mercy… I came out of the first one a complete wreck. Barely made it out of the room, walked halfway down the hall with my husband before the tears started rolling. The pain of laying on that damn MRI bed while it vibrated for 30 minutes… and let’s not even talk about the sounds or the fact that I was in a tight space (and I was in the large machine). Anywayyyyyy…. I fully prepared for the second one. I prayed for a full hour before we left the house. I took a little more than the prescribed dose of Ativan to help me relax, closed my eyes and prayed for the hour. You heard me… the HOUR I was in the machine this time. When it was all said and done, God was with me all the way and I made it through much better this time.

CERVICAL-10880

Anxious for my results, I had a call with the neurologist late Friday afternoon and she confirmed that the Degenerative Disc Disease has moved down the rest of my spine. That’s not surprising considering the constant pain. Given that diagnosis, I wasn’t so concerned, I’ve been living with this pain for so long. What I wasn’t really prepared for was her recommendation that I get surgery in my neck to address the Cervical Spinal Stenosis (which she said is also a form of arthritis, also known as bulging discs). I had done a lot of reading and I knew this was one of the potential outcomes. I just refused to go there in my mind. Well, as always “denial” never lets me get away with shit. I’m not saying I am having surgery, but I will keep an open mind. I’ll take surgery over paralysis any day. With the level of pain, weakness and numbness in my hands and feet… this is something I can’t ignore.

Next steps… well, I’m off to my next set of specialists. One to address the tremor, as now addressing it is important since the constant shaking (or in my case I do my best not to shake… I’m happy I can still use muscles to reduce the shaking so it’s not so visible… which leads to increased pain… don’t you love this vicious cycle!). The second referral is to the spine clinic where we will talk about whether or not surgery is the right option.

And… guess what’s decided to come back right now? Insomnia. THANK YOU! I mean… seriously? Is this absolutely necessary right now? (Pause for a moment) Of course it is! Anxiety, stress, nerves… this is what happens. This I should have control over. I am doing my best to give all this over to God, but … well, but nothing, I have no excuse, it’s a struggle.

So. My conclusion is aging is a b*tch. I was so blissfully ignorant all those years ago when I thought people were crazy to complain about getting older. And… it’s not that I want to relive any of those prior years. I’m all about going forward, it’s just I’d like to go forward with everyone I love in great health and with me forever. I’d like to age gracefully… not feel like my body is breaking down bit by bit.

And on that note… I think I’ll go attempt to sleep. Thank you so much for stopping by. I realize this wasn’t the most uplifting post… I hope with my next post I’ll have some better news to share. Remember tomorrow is not promised so make the most out of today. Spend time with your loved ones, laugh and remember what’s important in your life and make it a priority.

I hope you have a pain-free day!

Gentle hugz.

Tamiko

“Frozen” in Time… A Day to Remember…

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.

frozen

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.

its-not-happy-people

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.

Big hugz!

Tamiko

My Most Memorable Moments of 2013… THANK YOU!!

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!

My Most Memorable Moments of 2013

  1. New addition to the family… baby Annabelle!
  2. Fabulous vacations to Santa Barbara and Tahoe
  3. Watching my son at my husband’s show… one of my favorite memories of the year
  4. Completing my first 5K with my closest friends and my god-daughter and daughter!
  5. Moving houses… again
  6. Changing jobs… new manager… new team
  7. Being listed on Healthline’s Best Fibromyalgia Blog for the second year in a row
  8. Experiencing life as a freshman in high school through my daughter’s eyes
  9. Watching my son mature into an incredibly amazing adult
  10. 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!

fibromyalgia journeyBig props to Shelly Bolton!

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.