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!!

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

GUEST BLOG: Dear Wife and Fibromites… a letter from my husband

Hi everyone… my husband asked me if he could guest blog tonight. It came as quite a surprise as he’s been in the bed for the last few days. I would have thought the last thing he would want to do is be a guest on my blog. I share this with all of you and hope you have as wonderful a husband as I do! Please share this with your family and post your comments, we’d love to hear from you. – Tamiko

Dear Wife and Fibromites,

Thank you for letting me guest blog! So here I am, sitting in this empty bedroom, on my third day of pain. I have a pinched nerve that’s radiating down my neck to my back down my arm. I went to urgent care Wednesday morning in the most excruciating pain I have ever been in, (in my life). Once I got home, I barely made it up the stairs, then to top it off, I sat on the side of the bed in the most debilitating pain while I waited 2-2.5 hours for the Naproxen and Hydrocodone to kick in. Longest 2.5 hours ever! Now understand, I have a high tolerance for pain (so I thought) you see I’ve broken bones, torn cartilage, I even once played soccer for 2 weeks with an unknown broken foot!

So with that said, I thought I had a high tolerance. This pain was unfamiliar to my body, but very familiar to my brain. Hmm, where have I seen this familiarity? That’s right my wife! There have been many times when my wife could not make it up the stairs, could not move a muscle in her body without a grimace, and many times NOTHING would help. Holy shit, I am getting a “taste” of what she goes through as well as anyone else with that shitty ailment Fibromyalgia. Upset stomach because of the meds I HAVE to take in order for the pain to subside, have not eaten in 3 days, super sensitive to smell, constipation and nausea (TMI), but a big part of how I’m feeling. I have been waking up at night every 2 hours, awake for 1 hour, then sleep again for 2 hours. Just sickening! And the kicker is, I see zero light at the end of the tunnel. I am a walking zombie in pain right about now.

So back to my wonderful wife… all I can say is if you have a wife, spouse, partner, friend or family member with any type of chronic pain, I just realized you might never ever understand how or what they feel. And yes, this could be a boneheaded statement, because if your loved one tells you how they feel, you theoretically should understand. But you won’t, take it from me it’s been many years for me being on the non-pain side. But this little touch of pain I am experiencing right about now is letting me know what it really feels like (only if it’s just a few days) I actually feel like the idiot, selfish, self-centered husband, who supports my his wife, but was not really “getting it”. I have been in pain for 3 straight days (laughable to her 10 years) But I do understand just that much more. I always tell her how “I wish I could just take some of her pain away and have it go into me” I am re-thinking that right about now. This pain shit is no joke! My sensitivity level has just risen, my advocacy level has just risen, and my awareness level has just risen. I will listen more and I will help more, I will cook better foods for her, I will read more and I will educate myself more.

In summary, first off I can’t blog anywhere near how my wife can blog, but I thought I would just guest blog and share my great and terrible experience. Basically you think you know, but you don’t know. It is humbling and revealing all at the same time. If you are like me and have a wife in this life battle, hopefully you can just take a little from this blog even if it’s just to open your eyes that much more. So what needs to happen at this point is us non-fibromites need to stick together as well. We are the support system!

Thanks for listening.

Ray Arbuckle (husband and advocate of Tamiko Arbuckle)

Fibromyalgia and the “Why Me??” Syndrome…

So I’m sure many of you have had those hours, days or even weeks where you have the “Why Me?” syndrome. You know what I’m talking about. You are in a flare, you are depressed, you are having major foggy brain… you are just doing what you can to function and get through the day. People around do not really get what this feels like, we look normal – yet we are suffering (God I hate that word, “suffering” – don’t feel sorry for me, I just can’t think of another word). You start to question what the hell did I do to deserve this f’d up thing called Fibromyalgia? For starters… you probably worked your body and mind for years to the point where everything finally just crashed and burned. I have to believe that’s what happened to me.  No, I don’t deserve it. Living with it is not fun… it’s never fun. It’s a struggle to keep my emotions in control. I challenge myself every day with staying positive, smiling and not falling down that deep dark hole of depression. Most days I win, some days I lose.

Working full-time is honestly about all I can do these days. It sucks. Every week I start working on Monday, I get to Thursday and I’m struggling by the afternoon… on Friday I’m struggling all day. Saturday I try to get up and out of the house and do something fun, sometimes it works out, sometimes it doesn’t… Sunday ends up being a day of forced rest. It’s a cycle that I have come to know very well. I’m pretty sure I’ve written this in my blog once or twice (maybe even three times) before. I appreciate that I have a job that allows me to work from home. I don’t know what I’d do if I had to commute everyday. I am thankful for the job that I have, it’s not the job as much as it is working in general. I get resentful that it takes all my good energy. What’s left at the end of the day is like the warning message you get when your laptop/phone is about to die “Warning! 10% remaining…”. Lately I’ve had to just “shut it down” and go to bed and try again the next day. I am a professional TV viewer. Well, maybe not professional, if you ask me what I just watched I can probably tell you the name of the show, but not what happened IN the show. I’m too anxious to read, no energy to go out and a lot of the time I sit and think “what should I be doing right now?”, yet as many times as I ask myself this question, I hardly ever get an answer. It’s crazy. I should know what I want to do and how I want to spend my time, yet each day it’s the same thing.

How am I doing this week… The dreaded question… or better yet, “What’s wrong with you?”, “What’s going on with you?”, “Is something wrong?”, you get the drift. Hmmmmm, so many ways to answer that question. Yet, I can’t come up with any new material. I’ve used up all the standard answers… and yes, I’m in pain all the time… and yes, most days I am depressed and I totally get that I’m not always that responsive. I really am doing my best. My best isn’t always good enough, I get that. Thus, the “Why Me?” syndrome. I really don’t want to live like this, it’s not a choice. I’m well aware of my mental and physical state… all the time.

What does it mean to live with pain? Well, the obvious answer, to those of us living this dream life, is I need help (I apologize for the sarcasm, but this damn “Why Me?” syndrome really brings out the worst in me). I need a lot of help. I need help washing my hair, doing the laundry, cleaning the house, cooking the food, shopping, walking the dog, worst of all – driving… the list is endless. It’d be easier to answer what I don’t need help with. I need help thinking, processing information, remembering. When I’m feeling like this, I can’t remember my name sometimes. Don’t look at me like I’m crazy because I can’t remember something… I already feel crazy. It means, what takes a healthy person 30 seconds to do will sometimes take me ten times that… hell 50 times that on a really bad day.

This past week-end I decided I wanted to do some things around the house. I thought I’d surprise my husband, who was gone for the day, and do some laundry, wash the sheets and the duvet thingy. Well, I got up and did some cleaning, took all the sheets off the bed and the duvet thingy off the comforter. Did I mention I have the easiest bed to make? I did two loads of laundry and I started to make the bed when WHAM! My body was like “OHHHHH, HELL NO!! You are not going to do that!!” Awesome. The fitted sheet is on 1/2 the bed. I’m laying on top of the bed in excruciating pain. So! Now it just looks like I made a mess and I’m too lazy to make the bed (and the real topper is you can’t even tell the sheets were washed). The best intentions… I did manage to finish making the bed, but not before my husband came home. Surprise! What a fail. I was exhausted, in pain and frustrated that I couldn’t finish what I started (I did mention I have the easiest bed to make, right?). Ever had one of those days?

Annnnyyyyyhoooooo, as you can see, I’m having one of those weeks. I don’t want people to feel sorry for me. I just want to express what I’m going through. I want to know my normal is normal to others with Fibromyalgia and Depression. I want people who are in relationships with people like us to understand… you know, really get that we appreciate the help but most of all we need you to support us by understanding. Plain and simple. Understand life with FMS/Depression is what it is. We have to accept it, we want you to as well. There are no miracle cures. We may feel good today and not be able to get out of bed tomorrow. Don’t act surprised or wonder why… we have no answers. Trust me, we want answers. We want a cure. We want our independence and freedom back.

Please let me know how you are doing. Share your experiences with me. Most of all, relax.

Thanks for reading.

Stay cool!

Tamiko

Do You Dream?

Are you are dreamer? With the amount of sleep I don’t get, I end up in that dream state a lot. I doze, I nap, I am in REM state…. I just don’t sleep-sleep like normal people. What I do … is DREAM …  in HD … vivid color!! It’s super crazy. I have been dreaming like this since I was a kid. I have dreams that have been going on, continuous or the same dream over and over again. I have these places in my dreams that I have visited many times at different ages. It is to the point where there are things that I honestly don’t know if it is real or a dream. These are moments that I will think about in a blink of an eye and then forget again (who the hell are we talking about here?). I have nightmares. My mom had an angel that she would put over my bed when I was growing up to help me sleep at night. I really loved that angel. I don’t think she realizes how much that helped me. Nightmares are the enemy.

In my dreams I visit people that have passed on. I have conversations with my friends and family about what is going on in my life today. I share ideas and life experiences like they are still with me. I wake up and I forget that they have passed on and I experience the loss all over again. I am a little better than I used to be, if I can tell myself that I am dreaming, I can sometimes prepare myself or even use my time in my dream to my advantage. Really strange, right? But there are times when I just want to lose myself in that dream and just let go… it’s dangerous. I don’t want to wake up. The pain of waking up is so deep, it will take days to recover. I know I will relive that dream over and over again. The pain from that experience, visit, unforgettable dream… one so vivid that it sometimes haunts me forever.

In my dreams I can do anything, I can go anywhere, I can see anyone.

I can fix anything, I can mend any relationship, I can overcome any challenges.

I also see myself struggle and I see others struggle and I feel and it’s not easy. It’s uncomfortable and it’s awkward and it’s real life. It’s not “dream” in the sense that it’s all nice and beautiful and wonderful and perfect. It’s a dream because I have my eyes closed and I am not awake. If I could write it out as it happens, I would do it. I would love to analyze it every day as I dream it. It’s difficult to do as I have too many of these short stories going on at the same time.

Last night I had a dream that I went to see a doctor. I checked in and wait to be called. The nurse who calls me back looks at me in an disapproving way. You know the look, the one that says “you look fine, why are you here”.  This female nurse tells me to come around and meet her at the door and she’ll take me to the back, so I walk to the other side of the counter and stand there and wait for her to open the door. As I’m standing there waiting for her to open the door, I start to feel strange. I can remember I’m holding some papers in my hand along with a book and my purse that my cousin gave me is on my shoulder. The next thing I know, I start to fall – in slow motion. I am fainting. I am falling to the ground, but I have no control, I cannot stop myself. I am going to seriously just fall on my face. This is what it feels like to faint! I can hear the people in the waiting room gasp as they hear me falling. THUD! I hit the ground. My head hits the floor and I feel sick. This is so surreal. I can smell the carpet, I can feel how hard the floor is. There is an older lady sitting in a chair just directly in front of my face, but she doesn’t know what to do. I am just embarrassed. I just fell flat on my face.

The nurse comes out the door and sees me on the floor and calls for help, “Someone call a Doctor! Damn, she fainted!”. I can feel her moving me around, but I’m not sure what she is doing. I am really not well. I recall nurses around and a man with a gurney at this point. I remember feeling the light from the windows coming in. The windows have dark brown wood around them. I am laying on the floor on my stomach and I am not able to move at all, I can feel the scratchiness of the carpet and I can smell the office. I felt really light headed and sick to my stomach. I could hear the nurse talking about getting me cleaned up… and then? I woke up.

I woke up. I was awake for about ten minutes and then it was off to another dream about visiting a girl I was best friends with when I was about eight-years old. I often dream about her and for some reason we are always going to the beach.

I wouldn’t mind dreaming so much if it would allow me to feel RESTED in the morning! My mom and my Godmother are/were dreamers. This is the gift they have both passed on to me.

Crazy, right?

Well, I can’t help what I dream. Do you dream? How do you journal your dreams? Does it help you get through your pain?

Apparently the pharmacies ran out of my pain meds in the bay area so I can’t get them until tomorrow. A week without them, how much fun am I having? Trying to be a good sport, that’s all I’m saying!!

I think my next blog will be about meds. I could use some advice on meds. Hopefully you’ll comment.

Thanks for stopping by. Look forward to your comments.

Take care and stay cool!

Tamiko

PS. The picture was taken by my daughter… pretty awesome, right?

Integral Tai Chi is My New Depression/ Fibromyalgia Pain Drug of Choice!

“My body is healthy… My body is healthy… My body is healthy… My body is healthy…” I am chanting this in my head while next to me a lady is not so quietly snoring… interestingly it does not bother me, although there are moments when I want to laugh (but cross my heart…. I don’t). While I chant this over and over in my head, I scan my body for pain and if I find any, I mentally push it out of my body. You are wondering what I am talking about… I get it, I would be wondering too.

This is the relaxation segment of my Integral Tai Chi class. It is the last 30 minutes of the 2-hour class I have been taking… my new favorite depression/ pain drug of choice. As I am laying in the dark on my mat in the “corpse” position and the instructor has directed us to relax every part of our body and told us when we awaken our bodies will be healthy. It becomes my chant while I lie there for the next ten minutes. I feel like this class has changed my life. Sounds pretty crazy, right? Well, take me seriously and find a class and give it a try. Here’s the class description:

Integral Tai Chi is a self-healing system that integrates tai chi, yoga, relaxation and meditation to heal the mind, body and spirit. This comprehensive approach involves a series of 10 body movement postures each designed to increase balance, awareness, endurance, flexibility, flow, concentration, energy and spiritual transformation. Integral Tai Chi can be easily learned and practiced by all ages and body types.

I have been able to do things that have caught me completely by surprise… okay, for example… remember in Karate Kid that crane move that all your friends growing up have done and said “I’m the Karate Kid!!”…. I CAN DO THAT!!! SHUT UP!! I CAN!!! Unbelievable… I can actually balance on one foot!! I almost fainted with surprise the first time I did it… I started to giggle. I really did. No one can even understand the gravity of the situation. balancing on one foot, WHILE lifting my arms UP IN THE AIR like that is just CRAZY!! LOL!! For all you modern folk that do not remember Karate Kid (the original… God forbid…) it’s the Crane pose in Kung Fu Panda!

I can’t explain it, I don’t get it myself, but the stretches that are done… although they definitely are challenging for me, feel soooooo good! I feel really good both mentally and physically when I finish this class. I have felt like a totally different person the last three weeks. My husband tells me he is afraid to break the spell… he wishes I could take this class every day. I think that might be a bit much. :) I mean, what is the message he is sending to me?? LOL!

For me personally, I think I said it in a prior posting, the mental effect that this has had on me is so significant… the healing of the mind and spirit and the pure focus on positivity and exiting frustration, stress, negativity from the body/ mind… this is just what I need. I sleep better on the nights that I go… although this time, my beautiful dog decided to wake me up at 4:00 in the morning to go outside and I decided to write this blog posting instead of going back to bed. I also have been able to relax enough to read an actual book… this is amazing. I haven’t read a book from beginning to end in so long I can’t remember when. I have finished three books in the last two weeks. I usually start a book and then after the first couple pages or chapters, put it down and never pick it up again.

I know a lot of you are in pain. If you are in the bay area (San Francisco to San Jose on both sides of the bay), these classes are FREE, take advantage and give it a try… “listen to you body” and do what you can, but stay for the last 30 minutes. If you are not in the bay area, find a local class and it is very possible that you may have free classes as well. I understand this ITC organization is in Southern California offering free classes (this is a non-profit organization). This particular group is AWESOME! I think you can tell, I am pretty jazzed about this… just a little bit… :) I’ve been in pain a very long time… This is the first time I have found something that is FREE and works and not a drug! nice… it’s a blessing.

http://www.css-sanjose.org/eng/itc.html

  • 30 minutes of warm up
  • 60 minutes of 10 body movements
  • 30 minutes of relaxation and meditation

I could barely walk when I went to the first class… I am walking significantly better… ask my dog! :)

Thanks for reading! Stay cool (literally! It’s been pretty hot out there!)

Hugs….

Tamiko

This Roller Coaster We Call Chronic Pain…

I have spent the last few weeks in a complete funk. I felt like shit. My flare kept me down. I had a difficult time overcoming my depression. Life was not fun.

Chronic pain is an interesting condition to live with… it’s like living on this ultimate roller coaster. Your life is literally going in these huge swings of ups and downs depending on the levels of pain you are in. YOU have to constantly be in control of your emotions. Everyone around you depends on YOU to constantly be in control of your emotions, your pain medication, your antidepressants (if you use them), your diet, your exercise regime, your sleep hygiene, basically every minute and second of your life. Let’s be real… this is just unrealistic. I know this… my chronic pain friends out there know this… but 99.9% of the people who live normal lives will never understand this. It’s incomprehensible to get this. Although they (folks without chronic pain) deal with it, they want a consistent “YOU”, not this sometimes  emotional, sometimes irrational/ erratic/ sensitive person. Sure we live in the straight areas of the roller coaster and we appreciate those times, but we all know that there are going to be the ups and downs.

Here’s the reality. The reality is, no one is perfect here. No one. Not us – the chronic pain people. Not them – the support people. We all have to understand this. So, there really should not be an “US” and “THEM” in theory, but in reality once again I challenge everyone to  think about this difference in groups. How do we bridge this gap? Is there a need to bridge the gap?

How do we better educate our family and friends around us? I still find it very difficult to talk about all the conditions I have. I don’t want people to feel sorry for me, I don’t want to get “that” look. I realize I need to be okay with how people react, their reactions are normal. I realize it takes time for people to accept and be okay with change. I want to educate people so they can understand the conditions that I have. I want people to understand that I am in pain everyday. Some days are better than others, but even though I look good on the outside (okay people I am not trying to say “I look GOOD!”, I’m saying I look healthy good), the pain I feel is real.

So, let me get back on track (good pun, huh? Sometimes I am pretty good! lol!)… I was on the down side of this roller coaster and I was falling fast. I had no sight of things getting better and I really felt like the pain was going to keep getting worse, my stomach has been upset, I’ve been using my cane, my depression has been bad… that dark cave was getting smaller and smaller. I was trying to find ways to get out, but I didn’t feel like I had options.

I have been praying and I pushed myself to spend the 4th with friends and family and you know what? That dark cave opened up and the light shined through. I allowed myself to just relax and my husband and my kids took care of me and I enjoyed time with old friends and family. I had a fabulous time! I am not a social bunny (understatement of the decade). I generally do not like to be around a lot of people, but I had a really nice time. When my pain got to be too much, I looked at my husband and he knew exactly what I needed and we said our g’bye’s. We came back to the house and rested for a bit and while I rested my husband took Tani out for a run and then we all went next door for the annual fireworks and then back home for the night. All in all a great day to bring some well needed light into my life!

Sometimes, it just takes the simple things in life. Some friends to light up your life. Say “YES” to the invitations to go out, even if you stay for an hour. You might be surprised by the smile on your face when you leave. Wear something easy and don’t be hard on yourself about having to look perfect, people want to see YOU! I have missed out on many opportunities and I am sorry for that. I can only hope to work harder at this.

Also, let’s find ways to better educate those around us, and remember we aren’t all perfect… it’s just not possible. Let’s find a way to bridge this gap. The responsibility is on us, we are the ones with the medical conditions and we have the knowledge. Let’s find better ways to share in a user-friendly way. If you have ideas, please share with me.

Thanks so much for stopping by! Stay cool!

Tamiko