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

The Progress We Have All Made… Fibromites Unite!

I woke up this morning thinking about my blog. I cannot believe I started writing this 2 years ago. I realized, from reading my old posts, that I have come a long way. When I say “Fibromyalgia“, I don’t get as many blank stares, my doctors at Kaiser all “get it” now and I feel like my support system is pretty good. Not just pretty good… Damn good! I hope if you take some time to think back… you can see the progress you have made, that your support system is good, that you can see more blue skies days than dreary grey days.

I cannot believe that I have had over seven THOUSAND, seven HUNDRED hits on my blog!! WTF?? I mean, seriously, if you only knew. When I first started writing, I remember looking at other blogs and seeing how many hits they had and just wishing I could get someone to read my blog. I was so happy when I hit 100! To have had so many folks stop by and read for the last two years is truly amazing. I really appreciate it, I love to get comments and read what other people’s lives are like. It’s so important to me to know I’m not alone. I’m not crazy (okay, the jury’s still out on that), I’m not in this crazy painful world, going through these always new and UNexciting pains, on an island by myself. I am very sorry for you that join me in this world… wait, let me be clear… not sorry FOR you, just plain sorry. I wish none of us had this f’ed up thing we call FMS. But! It is what it is, and I, you, we …. are not alone, we are in this together. Fibromites Unite! (we need a good kick ass theme song  in the background when we say that)

I looked back in my blog and came upon this letter that someone else posted on their blog. It still holds true and I wanted to share it again. I hope you all are having a great day… foggy brain and all. It’s the last shopping week-end before Christmas, don’t overdo it. Take some time to reflect on the progress you made and give yourself a big round of applause and smile. Most importantly, smile. We don’t do it enough… find someone to laugh with today and think positive. Throw the negative shit out the window, hug you family, your four leggeds and be thankful that we have another day to face the world. Make it a good one!

Best holiday wishes to all of you!!

Hugz.

Tamiko

Letter to people that don’t have Fibromyalgia (FMS) and/ or MPS (Myofascial Pain Syndrome):

By Billie Chainey

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”.
When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time; in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

Please understand that being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour.
And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything.
That’s what FMS/ MPS does to you. Please understand that FMS/ MPS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”
If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.
Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take this pill/ supplement… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.

Another statement that hurts is, “You just need to push yourself more, exercise harder…”
Obviously FMS /MPS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/ MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!) but it is not created by depression.

Please understand that if I say I have to sit down/ lie down/ take these pills now, that I do have to do it right now -
it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS/ MPS does not forgive.

If you want to suggest a cure to me, don’t.
It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there were something that cured, or even helped, all people with FMS/ MPS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/ MPS, and if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.

In many ways I depend on you… people who are not sick…
I need you to visit me when I am too sick to go out…
Sometimes I need you help me with the shopping, cooking or cleaning…
I may need you to take me to the doctor, or to the physical therapist…
I need you on a different level too… you’re my link to the outside world…
If you don’t come to visit me then I might not get to see you…

And, as much as it’s possible, I need you to understand me…

I would also like to add a personal note to this that isn’t listed above that would be a tremendous help emotionally.

Please don’t make my disease about you… .or say things that make me feel like I let you down. Things like, “Oh, I was hoping you were better today.” make me feel guilty and that I have somehow disappointed you. I understand this disease effects everyone involved, but the last thing we, as the sick ones, want is to burden anyone. We have plenty of guilt for being so dependent on others as it is, we don’t want to feel like we’re disappointing you or making you feel bad by saying that we don’t feel good. We don’t expect you to say anything about us feeling bad as a matter of fact. Just be there… hold us when we need to cry from the pain or frustration of being so limited. We know you care… otherwise you wouldn’t come around or even ask how we’re doing, but please don’t make us responsible for your emotions too. When the bad days hit… we’re doing our best to deal with our own.

If you must say something it’s ok to say you’re sorry for what we go through.. but please don’t make us feel like we’ve killed your hope.  You are our source of encouragement.

Detoxing – I thought I was okay… I actually had a migraine!

I am seriously thinking about…

the days when I never thought about being sick.

when I was young and everything new seemed so “cool”!

the days when my most difficult decision each day was, “What the hell am I going to wear today?

what it would be like to live in a beach house and hear the sounds of the ocean as I go to sleep and wake up in the morning.

what my life would be, had I made different choices.

what choices I have at my age… seriously, what choices do I have?

without prescription drugs, what are the chances I can survive?

could I go a week without sugar?

what life in my house would be like without tv.

if I could reverse 3 choices in my life, what would those be?

what is love?

do I even know what “normal” feels like anymore? Is there such a thing? Will I ever feel it again? Did I ever feel it to begin with?

are dreams attainable?

is there such a thing as a perfect relationship?

are we defined by what we do? how we live? what we believe in?

does pain push me to depression or does depression push me to pain?

All these random thoughts come and go. Obviously not in any kind of logical way… let’s not forget “MY FOGGY BRAIN” is my name. They are all just random thoughts. Tonight is the first time I have actually thought about anything other than being sick in a long time.

I have been really sick. I didn’t even know it until this week. From my last post, I thought I was doing so well. I didn’t realize I had a migraine – and one that seemed to have lasted for weeks. I have been detoxing from Topiramate and Cymbalta and I took weeks to taper off the both of them. I noticed immediately the benefit of getting off the Topiramate since the suicidal thoughts and feelings went away immediately, suddenly, as if someone snapped their fingers and my brain just woke up – SNAP! Suicidal thoughts? GONE!

The Cymbalta on the other hand has given me way more problems, I assume this is why so many folks have found ways to provide their feedback – one way or another.

This past Sunday, and up until last night, I had this pounding headache, dizziness, nausea, sensitivity to light — I never put together that it all pointed to migraine. I just assumed it was a side effect from the tapering off of the meds and it would go away. I was completely WRONG on the “going away” assumption. Four days of this shit and finally I contacted my doctors. Last night I ended up at the doctor’s office receiving a Toradol shot in one thigh and a shot of Phenergan in the other thigh…. ummmm…. ouch! But let me tell you! The “ouch” from the shots was well worth the end result!

For the first time in months, I was able to actually SLEEP. You heard me. I finally slept for the first time in months! You fibromites out there know what I am talking about. Sleep? This is an enemy on most nights when we all want it to be our best friend. The best part of the deal? Let me say this really, really loud because I need to scream it from the roof tops… “NO FUCKING NIGHT SWEATS!” Whew! Glad to get that off my chest. I did NOT wake up 4 or 5 times in the middle of the night drenched in sweat and wondering what the hell just happened! I slept right on through. I didn’t just feel like I ran a marathon, no adrenaline filled dreams… I actually slept. Miracle! Apparently the night sweats I have been experiencing are related to the migraine I had? Very strange, but whatever. I’ll take it. As long as it stops or has stopped, I am ecstatic!

Here’s the thing… I was so used to having headaches, upset stomach, dizziness, completely active/ vivid dreams, night sweats… you get the picture. I didn’t think that it was anything more than the side effects of my illness(es). When I talked to the doctor last night and he was like “I believe what you are experiencing is a trigger migraine. You’ve had it for weeks.” I thought to myself… “NO WAY!” How could this be? So, it’s not specifically a side effect of Fibromyalgia, but it is a side effect of detoxing from the meds.

I took a leap and went in and tried the shots and it worked!

Of course it’s almost 3:00 in the morning and I can’t sleep now, but I’m okay with that since I don’t have all the rest of the shit going on inside me. There’s always a good and a bad to every life experience, right?

If you are having any of the symptoms I had and you aren’t getting treated for it … take it from me, see your doctor and push for help. I didn’t have to push, the doctor believed I needed help. Yours should too. If your doctor doesn’t help you or acts like it’s all in your head — GET A NEW DOCTOR! Do not let your doctor bully you or make you feel stupid. This is your health you are managing, not his/hers. I have said it before and I’ll say it again, “Take control of your health!”.

Thanks for stopping by, leave me a comment, I absolutely love to hear from you!

Stay cool.

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