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Pain Management Therapy suggests I find one thing daily that I am able to do...

Saturday, June 07, 2014

Regardless of crazy a$$ pain burning throughout my bod'. The animal that chronic pain has become can change and morph daily. Lesson: don't expect you can do a certain task daily. Be thankful for today if you can button those buttons, since you just don't know if those buttons will be so friendly tomorrow.

You have to learn to change and grow if you have a condition that does the same.

Case in point, I am VERY thankful today for being able to apply some make-up. I'm thankful for getting my eyebrows drawn on correctly (not looking angry or surprised. Success!)

So that's my 'one thing' for today. I swear it took me 20 minutes, and far too many curse words I might add. Whew!

Oh yes, and consciously try to hold tight to optimism. Keep that sense of humor in a headlock if it threatens to leave you. It's pure gold in tough times.

Happy Weekend guys. Don't let your eyebrows dictate your day! : ))

' Nuff Said.

  Member Comments About This Blog Post:

NIGHTSKYSTAR 6/18/2014 2:39PM

I am so sorry I didnt know you were having so much trouble!! I am subscribing to your blog so that wont happen again!! As one who lives with pain I know what it takes out of you...and you are like me..look for the bright side!!
You are in my thoughts...let me know if i can do anything!

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WINACHST 6/10/2014 8:33AM

    emoticon My hubby has chronic pain also and is finally in a pain management clinic and we were just discussing that he should recognize that he may not be able to do a task every day because everyday will be different in both levels of pain and ability to do certain things.

Your brows look awesome

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CANNIE50 6/9/2014 4:14PM

    Hi beautiful. I am happy to read this blog and I know it is not easy for you to post so you need to give yourself extra credit for going beyond your "one thing". Your eye(s) and eyebrow(s) are GORGEOUS! OUCH on the hands and everything else, honey - d@mn that E.T.H.E.L.L. for tormenting you so. You do not deserve this pain and I wish I could make it go away and leave you alone. oxoxox SweetPea.

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TIME4CARRI 6/9/2014 4:03PM

    You are such a gift to all of us. Thank you for sharing the hand picture. ......................ouch, dear one. I think of you often with all my tiny aches and pains that will never compare and you always inspire with your great attitude and humor. It is always a treat to see a blog from you especially because we all know that they cost you some pain and yet you're here motivating, and sharing your sunshine. What a gift you are to all of us. emoticon

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MAMADWARF 6/9/2014 1:38PM

    You are an incredible inspiration to me, Bren. I love you.

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KIKKI-G 6/7/2014 10:57PM

    You are so beautiful! Love your positivity every time. Love it.

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RYDERB 6/7/2014 5:19PM

    Bren, you are so special! emoticon
We've been on this journey together a long time, but you're so vibrant and amazing that even though I "know" what you deal with, I forget. Thank you for sharing the picture of your hand. You amaze and inspire me with your fortitude. Congratulations on those fabulous eyebrows! I have two "good" hands and can't do mine as well. You are BEAUTIFUL!

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2014TODAY 6/7/2014 4:53PM

    Wow. I hope your situation will improve and that your buttons will be friendly to you.
My compliments for your attitude. emoticon

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    Oh, sweetie...sending you hugs and love!
I do understand!

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TRENTDREAMER 6/7/2014 4:09PM

    "Happy Weekend guys. Don't let your eyebrows dictate your day! : )) "
I totally won't. Thanks for sharing that though. It gives me a glimpse of how things are with you.

emoticon emoticon

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JCARDINAL 6/7/2014 2:41PM

    Just got mine done yesterday so I'm safe on the eyebrow front!! :) I'm still doing therapy and coming back very slowly from my torn meniscus. I know what you mean about being proud of doing one thing daily. We have to be happy with what we can do and not dwell on what we can't. Love the eyebrow by the way!! emoticon emoticon emoticon

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AAAACK 6/7/2014 2:37PM

    Man, you're really good at eyebrow drawing! I've never been able to do it. Maybe one day you can teach me.

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A self-loving life is like a bowl of trail mix...

Thursday, March 13, 2014

Can I tell you how many dirty day dreams I've had of velveeta mac n cheese or chocolate dipped macaroons? Oh yes, really.
I'm throwing that out there to expose you to how obsessed I have allowed myself to be regarding food over the years.
My pain management therapist helped me come to the reality that this is a coping mechanism that I have created and fed as a way to cope with my health and chronic pain. As Ethel grew and raged over the years, I have reacted in unhealthy ways. But he refused to condemn me for it. Which for some reason bothered me initially? I guess I was too busy blaming myself, and thus repeating a wonky cycle of ridiculous emotional eating. My thighs can confirm this. : (

After too many years of denial in allowing myself to truly FEEL my fears, my stress, my pain, my anxiety, in an effort to push through those moments, I've decided to embrace it all. Abandoning the food restriction mentality that clearly did nothing for me, except solidify that I would emo eat later, and continue a strange and windy road that I forced myself upon.

I am now trying to give MORE attention to rewiring my noggin and rewarding the 'homecoming' to the eating style I definitely had growing up (AKA normal eating). I'm kinda excited actually to be honest. To NOT sit near someone who is ordering off a menu, based off of their desire and true hunger, not torturing the waiter with menu changes - and silently hating them. Of course, I need to get well enough to get outta the house, but you know what I mean!

Speaking of brains, have you seen the advertisements for the Good Morning America anchor Dan Harris' new book? 10% Happier. How I tamed he voice in my head.
He had an anxiety attack on live TV a while back, and then went on a self help journey. The book pushes even just 5 minutes of meditation per day and how it can work wonders in your happiness bank account. I must say I am intrigued by it.

So what do you do when things get funky? You're a stressball over bills, maybe you've been sick for months and can't catch a break (or your breath)? When work is a bear (or the other B word)? How do you mellow out, bringing yourself back to being sane when your inner emotional brat wants to crunch out the stress?
Don't tell me that you come home and reach for a handful of carrots to satisfy that craving instead of chocolate covered peanuts. I won't believe you...

Prayer seems to be helpful for me, unless I fall off the food wagon (and under its wheels). Then I seem to feel almost too guilt ridden to pray, and I find I avoid it. Sad but true! Like I'm unworthy to pray. Who am I to say that God won't hear me because I have Nutella smudged on my chin? Why do I finish my prayers feeling like a shriveled raisin sometimes? What's that about?

Visualization is great, but I find I dwell too much on the old healthy (non Erythromelalgia) me, not just the smaller me. Then I get depressed and sad. It's the equivalent of bringing down that old box of photos that some of us have in the closet, and sitting on the floor in a puddle of wa-wa-wa's by reminiscing. Not the best kernel of self-help for me currently. Maybe I'll give that a do-over when I'm ready.

So getting back to one of the concepts in this book was to watch your breathing. Yes, I'm sure it can be helpful for slowing down the chow-monster as well as anxiety. You know, those moments ha here you hear your heartbeat in your head? The more and more I read and try to understand emotional eating, the more that I can see that my emo eating behavior IS a form of anxiety reaction.
Wait, that means I have anxiety issues too? That's just bittersweet then, like dried cranberries. I'm learning more about myself, but also know that there's more I need to work on. Ok. I'll embrace that.

Mindful eating is where my focus is at currently. Being mind-full and not food-full. It's not for the faint of heart, and I wish I could find a way to do some mental push ups when things get stressful. To better arm myself (pun!) to feel those stressy anxious moments. Not to eat them (and the bowl-full of them, then crumbs that fell on my shirt, and even those on the floor. Ack, did she just say that?!?).

I do find bits and pieces from all of these methods intriguing and in need of more practice from my end. I'm certainly glad that there are so many methods out there.

Yoga works for some, as well as intense workouts. Workout buddies are great too, but my mobility is growing more limited, so I am not storing my nuts of self reward in those methods currently. Get me a cure, and I promise to come back to this one!

I am tight with a few spark pals, and we try to stay in touch OFTEN. It keeps us accountable, and we probably stir in one (or all) of these self-help methods at one time or another. Sort of like a giant bowl of trail mix. Sometimes we pick out the Brazil nuts - and skip the visualization. Sometimes we go for the cherries and almonds - and channel our energy into writing. My point is, depending on the situation and our potential reactions, we tend to use what we hope works in that moment. I could use some company on this journey. Care to join me?

I'd love to know what YOU find successful, and if you haven't found something that works yet, you're not alone! Keep digging in that bowl until you find it. It's ok to fall. Just keep going!

'Nuff Said'

  Member Comments About This Blog Post:

RYDERB 3/27/2014 1:07PM

    Firstů. Little miss Olive is TOO cute in that outfit. emoticon
I know I can never truly understand how much physical pain you're in, but I can relate to so much of your blog and the emotional pain that goes along with this journey to find what works, and how to live the healthiest happiest life possible It's too easy to get lost in the sea of pain and worry of tomorrows. I do better, when I focus only on "today". and take it one choice at a time. Being able to know that I have friends like you, that understand and don't expect perfection makes it easier too.
emoticon emoticon emoticon

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MILLIE5522 3/17/2014 4:57PM

    What a great blog! I have not been on SP so much lately so I have only just read this.....but what a gem!!! You have some great insights and ideas so thank you for sharing that wonderful mind of yours!! emoticon

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2WHEELEDSHARON 3/17/2014 12:08AM

    I love an Olive with crocheted ears!! emoticon

A co-worker and I have been reminding ourselves that taking the time to relieve stress is imperative, especially with our jobs. She's Muslim, so since she's supposed to pray 5 times a day, we decided to hold each other accountable to doing something for ourselves during those times. She wins because while she prays, I breakdance instead (my floppy version of it) but the point is that we remind each other not to let our minds question whether we should do it. So go from mind jibber jabber to fun or prayer or something good in 2 seconds, is our motto.
I admire that you're so open to these opportunities for pain to inform you about it's impact. That seems like a great start to working on some different practices. Way to go!

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TRENTDREAMER 3/16/2014 12:42PM

    "Can I tell you how many dirty day dreams I've had of velveeta mac n cheese or chocolate dipped macaroons? Oh yes, really. "
* If you weren't married, I would totally take the bait and respond to that.

"As Ethel grew and raged over the years, I have reacted in unhealthy ways. But he refused to condemn me for it. Which for some reason bothered me initially?"
* He's seen this for years. It is extremely common. When society makes us feel guilty about everything, it can be disconcerting when we run across someone who doesn't play into it.

"After too many years of denial in allowing myself to truly FEEL my fears, my stress, my pain, my anxiety, in an effort to push through those moments, I've decided to embrace it all."
* emoticon emoticon

"How do you mellow out, bringing yourself back to being sane when your inner emotional brat wants to crunch out the stress? "
* Figure out how to address what's causing the stress, see if I can learn something and grow stronger. At worst, live as best as possible with it (while looking for opportunities to escape or overcome).

"Who am I to say that God won't hear me because I have Nutella smudged on my chin?"
* If it's a source of guilt or pain, God's actually more likely to listen to you.

"Why do I finish my prayers feeling like a shriveled raisin sometimes? What's that about? "
* ??

"Visualization is great, but I find I dwell too much on the old healthy (non Erythromelalgia) me, not just the smaller me. Then I get depressed and sad. "
* emoticon emoticon

"Workout buddies are great too, but my mobility is growing more limited, so I am not storing my nuts of self reward in those methods currently. Get me a cure, and I promise to come back to this one! "
* Best of fortune to you!

"My point is, depending on the situation and our potential reactions, we tend to use what we hope works in that moment. I could use some company on this journey. Care to join me? "
* I try to go on at least once a week.

"I'd love to know what YOU find successful, and if you haven't found something that works yet, you're not alone!"
* Visualizations with a lot of whys? and so whats? It's one thing to visualize weighing x pounds, but then what?

For me, I think about walking around the city for a few hours without a sore back or legs the next day. I envision helping someone move and not being the fat guy who looks like he should be able to lift the heavy stuff. I envision the joy of that pair of jeans that I love and used to wear fitting again and enjoying wearing them. The confidence of looking good when walking around the mall or at social functions.

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TIME4CARRI 3/15/2014 12:26AM

    Wonderful blog Bren. So happy you wrote it. I almost jumped at the prayer and not feeling worthy part. I do that too! It's so weird but I feel like such a fat glutton sometimes that I am simply too ashamed.
On to what helps during stressful times. I am also constantly learning and here is what I have found. It's basically what Cannie was saying. I try to be proactive instead of reactive. I am struggling with this this week but yes, facing my fears and acting on them instead of running from them until I run out of road (or ice cream). I am also working hard on facing the disappointment of all that will never be perfect and moving forward anyway in spite of it. I don't do old pictures well either for the same reason as you, I don't find it inspiring only depressing so I am trying to create a future and a present that I can take joy in. It may be the first time ever to be truthful and I'm hopeful. That helps some. I enjoy the "streaks" knowing they do get interrupted by even one day of overeating and I cling to the good feeling so I can get back on track faster each time. I visualize a smaller me with all the same flaws but tell myself it will be just as imperfect, just smaller and that reality makes more sense so I live less in an unattainable fantasy and can really get invested knowing it won't change everything. I am buying more into the healthy aspect of food instead of just trying to make my food tracker not go over and learn and observe what days are easier and why. I am spending more time trying to be a good person instead of just a thin one and it makes the vain part of this journey not spiral out of control thus leading to crazy diet lady until I fail once again.
Whew! There is so much going on in our heads isn't there?!
I can see how important this has to be for you especially knowing it affects your pain and mobility and that is a lot more pressure than most of us have to deal with when it comes to our "why's" You are and continue to be amazing and inspiring because you keep moving forward instead of collapsing and giving in. What a gift you are to all of us.

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MEWHENRYSMAMA 3/14/2014 10:52PM

    Oh, Bren....
I hear you, I am here for you, anytime. I think we all struggle with the stress issues. I know I do and with my DH also in crisis, it adds a whole new level! I have tried meditation, breathing, reading, crosswords, journaling, therapy, crying, not crying, praying, gratitude,etc etc. I know I need to be more consistent, but usually feel I am lucky to be float in a big, strong current, worrying about the undertow! Sigh! I share your journey...
I am going to check out the book you mentioned by Dan Harris.
Love & Hugs,
P.S. Olive is so adorable!

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KAILYNSTAR 3/14/2014 3:59PM

    Such deep and most inner thoughts going on in that tiny brain of yours.

I have to say, I don't have any major coping strageties. I do lose myself in books, I used to walk lots, but no more. I have flat feet and anemia. I go up and down the stairs sometimes, but that's usually doing the laundry.

It sucks when one gets sick. Overtired, grumpy and just depressed.

I have had quite the journey for the past few years and I have to admit. I am beat. Just tired and empty. Yet, I keep going.

You and I have lots in common, yet we are so different. As anyone is I guess.

Right now I should be getting back on the no sugar and no wheat diet. Only to relieve my fatty liver and lose weight. Yet...I'm just not there mentally. I have a few more things to do before I start it again. Then we will see.

Hang in there Bren. You are a golden nugget in my pan of sand.

I think of you often and of course, I'll be here for you.


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POSITIVEHOPE 3/14/2014 3:32PM

    Remember, you innocently asked. Well here it is. Things that worked for me in changing the inner voice. I'll get off the soap box as quickly as I can.
The choice is struggle for life or find ways to overcome the challenges of the journey. I lost 80 pounds and then regained because I was still struggling. I struggled with the inner negative voice that compelled me to compulsively overeat even after losing all that weight.
I found THE answer for me to compulsive overeating at DrAmyJohnson.com "Fighting the Urge." This is a free 23 page online booklet that explains where those negative voices come from and how to stop them. By reading that booklet, I have learned how to stop that voice and she also is right when she says that once you start stopping that voice it doesn't show up as frequently. Awesome!
I also learned how to stop fighting with my inner negative voice. I spent years trying to combat that negative voice with prayer, by being angry with myself, down on myself, trying to educate myself with self help books and articles. I hated loathed and despised that part of myself. Recently I learned about Inside Out Weight Loss (IOWL) by Renee Stephens.
Renee was a former compulsive eater who now gives free 20 minute podcast talks on what is going on inside our heads to make us gain weight and how to change those inner thoughts that make this journey such a struggle. Through Renee, I learned that those negative voices have a positive intent behind their messages. That negative inner voice wanted to help me. You gotta be kidding! I finally sat down and looked at that part of myself without anger. What are you trying to tell me? Silence. Did you know you are a poor communicator? It took me a while but when I became really comfortable with my inner self and not angry, hostile or superior, I realized it started when I was a child and I was afraid. I thought if I was BIG I would be safe. So I got big. The message, "Eat it! You know you want it. It'll make you feel good." was meant to make me eat because there was a part of me that was still afraid of being small. Now all I have to do is say to myself, "it's okay. I've got this. I know you want it but trust me, we'll be okay." then make the decision to eat it or not. The voice isn't nearly so compelling now. It just stops. No drama. Just calm, peace. I am not an out there kinda person but Renee manages to reach deep inside me. Listening to her has released me from the daily struggle and made me feel powerful and joyful. I can hardly wait until my body weight catches up to my head on this journey. For links to Renee's free online Podcasts, Go to the SP IOWL team.
These were THE answers for me. I know they might not be everyone's answers but they are worth your time if you are still struggling with those issues.

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NUOVAELLE 3/14/2014 3:02AM

    I'm the "yoga/excessive workouts" type now after having been the "eat-everything-in-sight" type for years. And, honestly, this old habit of mine sometimes resurfaces and that's when I really struggle...But, as Cannie said below, there is honor in continuing the struggle - what a nice line that is!
And SP is always my safest shelter when I struggle. Because here friends can understand, relate, give a virtual pat on the back, send a virtual hug and remind me that I'm not alone in this struggle. Friends like you, honest and supportive and brave. And just watching these friends surviving the struggles and getting through them stronger and more determined is enough to keep me fighting my own.
Last but not least, books! An introvert's best friend, as I read somewhere. Getting away from it all. I know you're a reader and you know the feeling.
I've wished so many times for a cure and a pain-free life for you, Bren, and I won't stop wishing. Until then, I'll be right here with you digging in those bowls, trying to find something that works every time the going gets tough. Because there is power in unity. Like snowflakes. So fragile creations but just look at what they can do when they stick together! (Who said that...? Sorry, I can't remember.)
Big hugs!

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AAAACK 3/14/2014 12:36AM

    Your thing about prayer, not feeling worthy when you've been doing something you think you shouldn't, is how I often feel about Sparkpeople. Like I'm unworthy to come here and say ANYthing to anyone b/c I don't know diddly. And I don't want to bring people down with my junk. But dude, I'm pretty sure that God is supposed to already know what you're doing, and know that you're going to be opening a live chat. Ha ha.

But seriously, it's so weird how smart we all are (including all the people who have already posted responses to this blog) and yet here we all are. I read everything others are writing and think, yeah, man, you guys are so smart! I think I'm smart too. So why do I keep binge eating?

We have to find our middle ground. We have to figure how to succeed with what we've got. Like What Not To Wear used to say, "dress the body you have today." Well, I guess we should feed the body/life we have today. Physically and emotionally. We need to nurture the lives we have today and quit worrying about what we don't have.

Sounds simple, right? Yeah, if only. But I'm so glad to have you, and all the other Sparkers on this journey with me! You rock. Keep thinking. Keep sharing. And just keep being you.
ok...thought I was done, but I was looking for an emoticon and thought, "what the heck is the spray bottle for?!" Then I thought, Yes! We can use it to spray ourselves when we want to treat ourselves badly like when people spray cats who are treating the furniture badly...sure yeah, so be nice to you! And I'll try and be nice to me. No spray, no spray!

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MAMADWARF 3/13/2014 4:41PM

    pain meds, being cranky, eating stuff...yeah that is how I cope. Not a really good system is it?????

I deffinatly need to get on a better plan.


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CTUPTON 3/13/2014 3:19PM

    If I had bad chronic pain I am not sure how I would cope. Tylenol helps me . I feel flexible in the pool. I sleep lots. I am grateful to be old enough to retire and not face the daily stress of teaching. Getting my axes done is a horrible chore for me. But I will do it. I want to move nearer to Buffalo, NY to be close to my big family. I barely know some of them emoticon who married into the family or who were born emoticon in the last few years.

At least I can lie in bed and read and/or take a nap. Almost every afternoon I do that and forget everything.

When I do have pain ,whole body or both knees and left shoulder, I am miserable and can't even sleep.

Reading is my escape. I pick gristly books to engross me .

Boredom is a big problem of mine. Caregiving limits the time I can be away from home. So my friends on SP are invaluable to me!

Wish I could take the pain away or give solutions. I feel bad about that. Thanks for writing and sharing some of your thoughts!


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CANNIE50 3/13/2014 2:52PM

    Aw, that photo of cute little "stuffed Olive" in a hat is beyond adorable. I am glad you blogged, Miss Bren. As you know, I am a struggler but more and more I know there is honor in continuing the struggle, rather than collapsing in a big fat weepy defeated heap. Yes, writing to you is one of the ways I gain perspective and gather joy (there is such joy in honest friendship which is based on nothing but mutual caring, admiration, and respect). I breathe and pray. I walk my dogs. I go the gym. I feel appreciation that I CAN do these things. I, too, move further and further away from the false promises of deprivation and restriction. Deprivation and restriction are NOT the same as self-discipline. Discipline means "to learn". The only thing I learned from the "NO NO NO" and "diet diet diet" mindset is failure. What my body needs to function is nutrients and the only true way to get nutrients is to eat enough food to get enough nutrients. I also know my desire to compulsively over-eat goes way down when I am dealing with whatever the realities in my life, currently are. When I am stressed about money, I need to look at bills, talk with my husband, and get paperwork in order, despite my fears. When my home feels messy, I tackle the dishes and the floors and the laundry, etc. and set things straight. Again, I am grateful to be able to tackle chores and face fears and you have helped me in these areas by giving me perspective. Finally, lately, a recurring theme in my head is "it's all temporary". Beauty, good health, youth, athletic ability, life - it's all temporary. When something goes, like youth, something else comes along, like wisdom. Dwelling on what was clouds our ability to see what is. Life is not for sissies, it is TOUGH, so it is good that we are tough. Though, having said that, I deeply wish that your life was no so tough. But, it is and the only thing we can do as your friends is to love you through it. Good thing you are so easy to love, Miss Bren. emoticon

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JCARDINAL 3/13/2014 2:30PM

    I love this blog!! It puts so much of my life in perspective. I just recently told my Doctor that I am going to stop comparing my life before and after Lupus. I'm never going to get back there so now I'm concentrating on where this version of me can succeed. My go to stress reliever is reading. It calms me mind and body. I can pick up a book and completely escape from real life going on around me. A book and a cup of tea are like heaven to me. We can get through this Bren, we are strong, determined women!! emoticon emoticon

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Mourning the loss of my pain treatment

Tuesday, January 28, 2014

It's been 3 weeks since my last round of pain treatment at the joint (the hospital), and those last drops of treatment drugs seem to have been depleted.
I find myself sad about that since that also means that restful sleep is now a luxury I won't get much of, and my annoying pain is back to 100%. I seem to have a whole litter of new lesions breaking through on my hands and feet too, which force me to think twice about walking or touching anything, and take months to heal.
Although the treatment drugs only seemed to blunt about 30% of my pain, I now see how much that truly did help. Even though I only got about 2-3 weeks of that pain buffer, I should be thankful that there is at least one option for me that I can go to.
It's not a cure. And I would rather have one, but we are not there yet.
I need to shake the funk off and look back at the small daily tasks I was able to do a bit better, even temporarily.
My dog certainly appreciated the extra wuzzles. I also drove short distances around town, folded some laundry, cut up some brussel sprouts (don't laugh! I love these things!), and got my eyebrows penciled on straight more times than not.
I guess I just needed to work this out a bit in a blog.
Funk has been shaken and wiggled off.
Transformed into anticipation of my next round of treatment in 4 weeks.
The countdown has started. I will cut up more brussel sprouts soon! Munch munch munch...

'Nuff Said,

  Member Comments About This Blog Post:

DEDICATED2HIM 2/20/2014 1:30PM

    Did you go to Mayo? Or is this an old blog? So curious to find out if it helped. It is not in the realm of possibilities for me to go....insurance and all that. I would like to go. Is it a far hike for you? Do you stay in the hospital when you go? or in a hotel? I hope you get some answers and some relief. God bless!

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CTUPTON 2/17/2014 8:41PM

    As always, I am praying for some relief for you. Brussels sprouts, huh. Whatever floats your boat. I like them, too, but I don't think of eating them all that often. lately I have been using some veggie cheese. I used to hate it, but maybe I found a brand that I can handle. I also found some thin, crispy tostidos. I hope they keep making those.

Thinking of you, chris

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EDENFELL 2/11/2014 9:04AM

    Crossing fingers for an immediate cure -- what is up with those scientists..shouldn't they be working double time already emoticon ..I have to say that your positive attitude is so inspiring..I'm sure you're sick of hearing that..but just want to say that your blog rocked. Thank you for posting...hope your week is going well. emoticon

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KAILYNSTAR 2/5/2014 12:05PM

    It's amazing to think that there is a silver lining. What I mean to say, is pain therapy works for you. For many people.

Nothing worse than having a funk, but everyone has one.

I have to say, I hate brussel sprouts. Never liked them. So smile whenever you munch one, 'cause in the back of that massive brain of yours, you can hear me saying...."eeeeeeeewwwwwww'

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SWEETNEEY 1/30/2014 8:27AM

    When we have pain, we realize how fortunate we were when we did not have it. But I hope that pain goes a way and your healing is expeditious.

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AAAACK 1/29/2014 8:16PM

    I like that you remain positive, looking at the things to be thankful for. I like how you handle all this stuff. I think that you are quite possibly the most inspirational person in my life. No joke. No silliness (not for this posting, anyway). I mean that sincerely. You are amazing.

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CANNIE50 1/29/2014 7:04PM

    I pray for the day that someone/something hustles CR@P & Ethel into a room and beats the, well, cr@p out of those two bullying diseases. Maybe the answer is at Mayo - I certainly hope so. I am excited for you to go. You forgot, on your list of accomplishments, POSTING A BLOG! I am happy to see this, and I am not alone. Because hugging sounds as if it would be painful, I am blowing kisses instead emoticon emoticon emoticon emoticon Ruby RED kisses, at that!

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JCARDINAL 1/29/2014 11:33AM

    As always, you are my hero! You were dealt a lousy hand of cards and you make the best of them. There is always hope on the horizon that someone will find a cure and put Ethel in her place. You are always in my prayers. You help me deal with my own challenges. emoticon

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MAMADWARF 1/29/2014 10:57AM

    I love you, girl. You always find the bright spot

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TIME4CARRI 1/29/2014 12:15AM

    Oh sweet girl, you are one tough chick. I'm sorry the pain is back in full, I have been thinking about you and wondering......... emoticon
Your sense of gratitude is uplifting and inspiring. It probably is uncomfortable/painful to be on the computer much so just know we are all here cheering you on and sending you beautiful thoughts and prayers for relief emoticon

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CINDYTW 1/28/2014 6:49PM

  You are strong, you can do it! emoticon

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KIKKI-G 1/28/2014 5:07PM

    Keep posi! emoticon

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RYDERB 1/28/2014 4:53PM

    emoticon You are a true warrior. Hoping and praying that those Mayo doctors have some secrets tricks that will offer some longer relief

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The next chapter.

Monday, December 16, 2013

Strange week for me, as this will be my last week at work. Time to go on disability. I've been at my job for over 13 years, but Ethel has just become too much. The swollen bumps and lesions on my hands and feet make it just insanely painful to move much, on top of my daily swelling and pain. I feel like I have to move mountains in order to walk more than a few feet, and driving is a bit too challenging for the time being.
My pain doctors said last week that they were concerned that my EM was actually deforming my hands, and want me to start coming into the hospital for a week-long stay every 6 weeks to try to help with pain. There is just no way to get around that and trying to work. And I can't work part time.

I feel like I've been defeated, and I'm also pretty p!ssed to be honest. But perhaps it is for the best. I've worked a lot longer than anyone thought I could have, so hoorah for being a persistent chick! And of course, there's a slice of me that is hoping that I get some major pain relief soon, a cure for my disease, and can get back to work. That would be so great!

Happy to say that there is a silver lining to being stuck at home from work though (yay!).
The Mayo Clinic has contacted me in response to my doctor's 2nd petition to try to help me.
So exciting! Especially since they turned me down years ago.
I will need to get to MN in February of 2014. Can't fly anymore due to what the pressure does to my system, so we are trying to figure out how to get me there. Randy will chaperone me, which is great, and we are both excited. I wish I was like one of those CIA agents who get knocked out and shipped all over the world in a box lickety split like in my books. Ha!

So now I guess I will be reading a lot of kindle books on my ipad and navigating the storm that is Ethel for the next bit in between treatment. I should feel thankful for the time and I know that I will soon, as so many others don't have health insurance or the option to go on disability. I am blessed for sure, but also unfortunately bitter since this was not a part of my plan. Need to shake that last part off.

I will get to be home for Christmas, but will check into the hospital on 12/30 for my next round of treatment. I need to use this time to listen to my pain, and stay still when needed. I also need to use this time to pay attention to my emotions and not allow them to feel as though they trigger me to eat poorly as a result of it. Bad eating certainly won't help my body!

'Nuff said,

  Member Comments About This Blog Post:

TIME4CARRI 1/1/2014 12:37AM

    I'm so sorry I missed this! I haven't been very consistent here lately but I'm glad I came poking around your page emoticon
You are never defeated girlfriend. Just a new path and a turn in the road that's all. It is amazing what you do and more amazing your positive attitude through it all. I'm happy that you'll be able to Spark more.....lol. Selfish one I am! I hope to be here more too now that the holiday crazies are over. Know that we are all interested in your progress and journey so keep the updates coming.

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TRENTDREAMER 12/28/2013 8:15PM

    "I feel like I've been defeated, and I'm also pretty p!ssed to be honest."
* Sorry to hear. I would be as well.

" I wish I was like one of those CIA agents who get knocked out and shipped all over the world in a box lickety split like in my books. Ha! "
* What books do you read/write?

I can tell that you're excited. Most people going to Minnesota in February are not so joyous. If this is your ticket to good health again though, I'm happy for you!

"I am blessed for sure, but also unfortunately bitter since this was not a part of my plan. Need to shake that last part off. "
* I wouldn't shake it off, honestly. I'd process and resolve it. But that's me.

Keep fighting the good fight. I'm proud of you.

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KAILYNSTAR 12/23/2013 8:53PM


What a life you have. My DD2 says hello to you by the way. I often read your blogs out loud to her or my husband. Just because I like you so much and I want to open their eyes to other people's lives. Making them learn that there is always someone out there that has it either worse or just funny or takes life in stride.

You are very loved here. I'm often asked about you, how you're doing and such.

I'm so sorry you have to go on disability. You're such a determined person.

What a blog. Moving mountains in order to walk. No wonder you're in pain. I don't think I would ever consider moving a mountain. I'm just not that ambitious. Nope. Not at all. ;)

Great news about the Mayo Clinic. I really hope things work out for you.

I really do.

Take care of yourself and know that we are here. Cheering you on!


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MEWHENRYSMAMA 12/21/2013 2:32AM

    Dear Friend,
I just read this blog, somehow I missed it...I am keeping you in my thoughts and prayers
for you to have less pain and get help! I understand due to my DH and his health dilemmas and my own issues. Please know I care about you, wish you good things and I am here, if you should need
a shoulder to cry on...sometimes it is actually easier with friends who are "out there".
Love & Hugs,
Mary emoticon

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WINACHST 12/20/2013 8:47AM


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NUOVAELLE 12/17/2013 2:58AM

    It's normal to have mixed feelings about this. But, please, Bren, don't feel defeated. You are an amazingly strong woman and this is YOUR decision. Try to focus on all the good things that this decision has to offer. And if it means some much-needed pain relief for you, it surely is a wise decision, isn't it?
I'll be praying for a cure.

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AAAACK 12/16/2013 10:58PM

    You know it is my hope that not working (soon) will be really good for your pain levels and your symptoms. I also hope that Mayo takes care of everything and figures out something that nobody else has yet. But please don't feel defeated that you have to leave work. Nobody knows what tomorrow brings, you may yet get to (have to?) go back to work yet. But in any battle there are times that you have to switch the front on which you are fighting, and this is just one of those times - you are NOT defeated, you're just switching the fight to another front! Now, to get you to that front in the least painful way...I hope you guys find something that works really well!

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KIKKI-G 12/16/2013 10:44PM

    Wow Bren. You always amaze me. You are a RIDICULOUSLY strong woman & please don't be humble. I know if I was going through what you do I would have definitely let it get me down but you just have such a positive outlook and I admire that so much. Great to hear that you will be able to be home for the holidays & cause a ruckus on the ward on NYE girl!!

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2WHEELEDSHARON 12/16/2013 8:21PM

    I have to say I'm not excited about you being knocked out like a CIA agent so I hope you can find some sort of non-injurious way to knock yourself out to get there! What a great prospect. I have all my parts crossed that they'll be able to help you. I'm so sorry for the hard and painful parts of the process. I'm sending you many many many hugs. And I think you're a shining star for keeping your amazing perspectives!

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1HAPPYSPIRIT 12/16/2013 5:33PM

    Keep the faith and I'm hoping the Mayo Clinic doctors and staff will be able to help you!

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RYDERB 12/16/2013 5:23PM

    emoticon emoticon

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CTUPTON 12/16/2013 4:01PM

    Great! You are finally making progress in getting proper treatment and being at home will help of course. After retiring it took me many months to recuperate and I don't have your illness. Being home can be pretty neat. I thought I's get down but I am liking it. Wishing you all the best! Don't give up. SP friends will help you through anythhing. Love, chris emoticon

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MAMADWARF 12/16/2013 3:21PM

    You have been through so much! It will be nice to just be able to conevntrate on your health instead f pushing through just to function. You're so brave. I love you to the moon and back.

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MELIBUG 12/16/2013 1:24PM

    Everything happens for a reason my dear friend. However, sometimes it's not always clear on the why. You need to take care of you and work can come again later. I'm happy the Mayo has invited you to come visit; praying they find some remedies for what you are going through. I look forward to meeting you in person come February. It will still be winter cool for you.
Hugs ~ Melissa

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IYA_EKUNDAYO 12/16/2013 1:17PM

    I am so happy mayo accepted you.
Don't look at this as feeling defeated, look at it from the
perspective of taking the time to focus on getting
you better. When you are healed then work
if you want to.

You are going to have haPpY FrIdays for a
while now.
I am pulling for you, you are a strong lady!

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JCARDINAL 12/16/2013 12:26PM

    That would be fantastic if Mayo accepted you!! Maybe they can work their magic and get you some relief from the pain. Never beat yourself up about this , you are the most important person and you need to take care of yourself. 2014 is going to be your year for some miracles!! emoticon emoticon emoticon

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Did I surprise you?

Thursday, September 05, 2013

Did you hear from me recently? Was it a bit of a shock?
Hi, I'm Bren. I most likely slammed you with a goodie (or two) recently. If not, look out, it's coming. I'm basically blowing my spark points piggy bank and goody'ing all of my sparkly friends. I've been lagging in that departmeant, so forgive me.
I do really want to be encouraging and supportive for you, heck, even just plain silly. I've been fighting my body lately, and felt it easier to just lie down (with my legs up over my head (LITERALLY) to try to alleviate some of this swelling that I have been plagued with for over a month. New issues on top of existing ridiculous ones? Fantastic.
Oops, see, look at my big huge eye roll right there. I'm not my usual silly self.
I have to literally take a break after a short (cold water) shower since I am in a lot of pain just from the motion of moving around to get into the stupid shower.

My 'good' time is practically non existent, and I spend that good time by doing things like petting my dog (since I often can't touch her. She's too warm!), or making myself lunch. Gotta be honest, I've let it get the better of me, and have not been sparking as much as I should have. It's easier to curl up and wish the pain away, but that doesn't help the pain right?
It's NOT easy to spark and support others when I'm in a frumpy dump mood, but it IS valuable and important to me to be involved and STAY involved.

So here I go (again), announcing that I am here, and will likely be flinging some ridonkulous goodie your way soon.
It's just me, telling you that I am thinking of you, encouraging you, and screaming at you if needed (ha!).

'Nuff Said

  Member Comments About This Blog Post:

KIKKI-G 12/16/2013 10:49PM

    I always enjoy your goodies girl! keep em coming & keep up the positive self. You'll be back to silly in no time.

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MILLIE5522 11/21/2013 4:46PM

    I don't know how I missed this lovely blog.....I suppose I too have not been as Sparky as I usually am :( Wishing you all the healing love that I can dear SP friend xxxxxxxx emoticon

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STESSOUTCHICK2 11/4/2013 10:30PM


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EDENFELL 10/26/2013 11:38AM

    emoticon Sending loads of positive vibes and healing thoughts your way..

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CTUPTON 10/6/2013 8:00AM

    Just checking in to see how you are doing? chris emoticon

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JCARDINAL 9/6/2013 1:17PM

    I am so sad and sorry that you have found no relief from your pain. I send healing prayers your way every day and one day they will be answered. In the mean time stay goofy!! emoticon

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CINDYTW 9/6/2013 12:12PM

  emoticon Hope you find some relief soon!

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MISSLISA1973 9/6/2013 7:39AM

    I am so sorry you are in such pain. I can only imagine how difficult Sparking can be right now. Pain changes everything.

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NUOVAELLE 9/6/2013 4:30AM

    Ok, Lena below said it all. She spoke my thoughts so what's left to say?
Just that I'm always here for you Bren! And a big thank you for all the support and inspiration you so generously spread!
A big, huge, gigantic hug sent your way!
emoticon emoticon emoticon emoticon emoticon

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BLOOMINGLENA 9/6/2013 3:38AM

    Oh, my dearest friend Bren! You always encourage and support us the best way you can! We are here for you! You are a generous and brave girl and you have a "big" heart. You are sweet and adorable. And you have a great sense of humor, too. You certainly are the person I admire the most and get inspiration from. You are a fighter! We all are. It takes a lot of courage to never give up fighting! You have it. I send you all my love, hugs and prayers you get rid of that swelling and pain soon. My thought is with you.

emoticon emoticon

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ELSCO55 9/6/2013 12:17AM

    Take care of yourself

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OOLALA53 9/5/2013 8:32PM

    Let us support you! emoticon

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MELIBUG 9/5/2013 8:04PM

    Love ya girl! Thanks for the watermelon! I must admit I was a bit creeped out by his goofy smile until I realized his undies were in a bunch and just needed an adjustment. LOL
Well of course, I had to help him out; who could leave someone in that condition. I'm sure he'd do it for me. Since you sent him my way, I must go earn some more SparkPoints as I have the perfect gift in mind for you.
emoticon & emoticon girlfriend!
Thinking of you always!

Comment edited on: 9/5/2013 8:17:10 PM

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KAILYNSTAR 9/5/2013 5:08PM

    Who'd of thought that you could possibly be silly?!

Not me. Nope. Not at all.

I have come to the opinion that you are stuffy and have your nose in the air....thinking that you're smelling brownies and realizing that you're just hallucinating!!!!! emoticon

Awww, Bren.

I'm so sorry you're just existing.

Just know that I think of you often. I mean, you're one of the few insane friends I have.

Take care sweetheart.

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