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JITZUROE's Recent Blog Entries

I seem to be sporting a reverse MOHAWK...

Tuesday, October 21, 2014

...down the peach fuzz of my back. From the base of my head to my tailbone. The docs used what they call 'pink tape' (it's actually peach guys!) to anchor the wires and tubing from a long term epidural in my spine.
I told the nurses that they should complete the task and give me the full body wax, rather than just the peach-fuzzy reverse mohawk, since my punk rock gal phase was decades ago, ha!

BAH HUMBUG GRUMBLE WARNING: I've was booted out of The Joint 4 days early due to potential infection (heartbreak!).
So the docs shut off treatment far too early. Only made it 1/2 way through before things went south.
Disheartening to see progress, to actually SEE progress, and have it peeled back rapidly like a roll top window shade - revealing all of the dusty dirt covered items of illness.

My disease quickly reverted back to its not-so-adorable status. My body revving up its white blood cells to fight infection, turning me into even more of a heat generator already (hooey, it's HOT in here!).
Taking temp often, checking swollen areas of my back every few hours. Anti-inflammatories 'round clock. Blah blah. All on top of my constant chronic pain. OY!

Silver lining: this procedure and treatment protocol seemed to help keep my feet alive. That's insanely amazing! How often do I whine about treatments bombing? A lot!

Poopy squishy center of the silver lining: my feet and parts of legs immediately snapped back to their sickly oxygen-robbed colors and flavors. Back on track toward a sad death.

Next steps: break out of can of silver spray paint and 'silver line' my days until I can take advantage of doing this jam session again - maybe 8 weeks. Then Operation Save My Feet is back on. Gotta stay positive!

And now I am on to phase 2 of everything: heal the new wounds inflicted on me, settle into being home, strive to do some type of exercise regimen ASAP. Even one bicep curl is better than nothing.

And as the song goes from Social D, for now this is the Story of My Life!

'Nuff Said

  
  Member Comments About This Blog Post:

WARRIORGIRL121 10/22/2014 9:10PM

    So sorry to hear what you're going through... I'm just continuing to pray for you! emoticon

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SWEETNEEY 10/22/2014 8:30AM

    We gotta take these things in stride - two steps forward one step back, they say this is progress.

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MEWHENRYSMAMA 10/21/2014 8:55PM

    Oh, Crap! You are in my thoughts and prayers and will stay there! I am so sorry it was cut short but at least you saw it work and have hope! Get super comfy at home with hubby and Olive and have a hot beverage (as Sheldon from Big Bang Theory always offers at these times) and relax!
Love & Healing Hugs,
Mary

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JCARDINAL 10/21/2014 2:49PM

    What a visual! I can just imagine the peach tape. Sorry they booted you out early. Your job,(should you choose to accept it), is to heal and get back in there! That's great that you saw improvement. Just think, 8 weeks from now you'll have some healthy, pink piggies. emoticon emoticon

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AAAACK 10/21/2014 11:41AM

    Ok, 8 weeks. That's doable, right? I mean you already know it works for you, so 8 weeks of hanging on and you get to go back for a treatment that you know is going to help your feet. And maybe if you heal faster than 8 weeks, maybe they'll let you go early. We never know what the future holds for us, sometimes it's good stuff. So, for you, I'm hoping for the good stuff!

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KAILYNSTAR 10/21/2014 11:15AM

    And you packed extra undies for nothing!!!! What the heck?!

Next time, don't pack the extra undies, that probably jinxed the whole staying in thing....

(One can always blame things on inanimate objects, right?)

I wish there was something more a person could do. I cannot imagine the disappointment you went through with doctors walking in and sending you home earlier than planned.

Take care of yourself. Pop those painkillers and such.

Maybe moving the pill bottles around are enough of a work out? They've got to be big and heavy... emoticon emoticon

Hugs to you!

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TIME4CARRI 10/21/2014 11:07AM

    You are so adorable. I haven't been super active in a while so when I saw your blog I was like YIPPPEEEE!

Social D, wow taking me back girl!

Your hot life is so immeasurably a gift to everyone who even only gets to know you peripherally. If your feet are not feeling intact know that your spirit definitely is. I'll bet the hospital staff was just as heartbroken as you to see you go. You are the silver lining. emoticon emoticon

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2014TODAY 10/21/2014 10:57AM

    emoticon emoticon emoticon
I'm so sorry your treatment was cut short. I wish I knew what to say. But YOU are the expert in offering supportive words... Just know I hope things will look up.

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Operation 'Save My Feet'! A necessary chapter in my book?

Monday, October 13, 2014

Are you a foot person? Love to get a pedi and pick some adorable polish? Umm, then this blog might not be the most appealing (sorry!).

I don't have toenails to paint, and quite frankly can't handle anyone touching my feet due to pain. Oh boy, my feet certainly are NOT cute either. Swollen. Cracked. Flaming red and hot to touch in most areas, purple in others. My little piggies are ulcerated and infected. Poor pups are quite unhappy.
I miss my cuter feet. Shoot, I miss shoes! Ahhhh, I will still dream about them though. Mmm soft leather boots...nice! 😴

Met with my Pain Clinic doc 2 weeks ago as a follow up to my recent trial of IVIG therapy. Long story short: IVIG unfortunately didn't do anything for me. I reeeealllly wanted to 'will' it to work. Honest and truly! But I struck out with both rounds (poop!).

I thought that the doc would just confirm the IVIG stuff, and then I'd get wheeled out of the clinic by my hubbie to head back home.
But things got serious quickly once the doc looked down at my legs. Sobering news: My feet are kind of dying. She actually said that (Ahhhhhhhhhhh!).

She wants to admit me to the hospital after a procedure to place an epidural in my spine, numbing my legs completely. Then the Pain team will flood my legs and feet with vaso-dilators (medications to open my veins) to get blood to my feet, and keep them alive. I will need to have the epidural in place for a week to let those drugs work, since the meds will trigger very painful Ethel flares.

Her argument was that if she could keep my legs numb and force circulation within, then my feet should hopefully recover a bit. Unfortunately for me, the leg/feet CPR (if you will) is only a short term solution. If I don't do this... then yeah, dead little piggy toes for sure (again, Ahhhhhhhh!).

Not going to lie, it can be challenging to get through certain chapters of my personal book of life.
Experimental treatments, consistently plagued by side effects.
Increased pain directly linked to trying new treatments can be particularly harsh, since there's that little voice that whispers that I brought this on myself.
Failure of treatments and therapies for years now.
Coming home from the hospital usually worse than when I went in.
It can be a heavy load!
And don't forget to dog-ear the corners on some pages as a reminder to allow yourself to shed some tears and experience the emotions of that recent roller coaster ride too.
Seems much easier to close that thick heavy book and choose a lighthearted rag mag to read instead at times.

So here I am, waiting for the hospital to call me with my procedure time for tomorrow morning. Then I will need to count backwards 12 hours so I know when to stop drinking water. Lord knows I don't reeeeally need to worry about the food part.
See, while my heart says, "Let's do this baby! Let's see what happens!", my emo's scream, "Nutella and Cookies are the solution to life's problems!!!". Ohhhhhhhh...

I crashed and burned on the food already in the days leading up to my procedure tomorrow, but I'm not going to dwell on it.
Hmm, the emo eating was a 'fluff' chapter that would have been better left out of my book o' life huh? Perhaps like marshmallow fluff? Wait, no! Not that! Hee Hee.

Time to pack for trip to The Joint. LOTS of undies this time in case they extend my stay again. Snicker snicker... : )

Operation Save my Piggies (and feet!) has commenced!

Prayers, good juju, healthy energy. Whatever you can fling my way would be appreciated. Just not junkfood. Don't need anymore of that. Hrrrumph!



'Nuff Said.

  
  Member Comments About This Blog Post:

CANNIE50 10/15/2014 3:24PM

    Oh, honey, I don't mean to be argumentative with you but HOW ON EARTH IS ANY OF THIS YOUR FAULT?! You don't deserve one ounce of the tons of pain inflicted upon your one and precious body. None of this is your fault, none of it! I have to admit to feeling a little glad that they are giving you an epidural because the only thing I could think was "she won't feel any pain for awhile". I know it will be difficult and truly unpleasant but I am hoping the one thing it will not be is painful. The procedure they are doing, to my unscientific mind, seems to make so much sense. I pray it is helpful and successful and that everyone involved in your care sees you, and treats you, as the delightful person you are. I cannot even fathom the depth of disappointment at all the treatments that simply have not delivered. I am so truly sorry, Miss Bren. Your spirit is amazing. I adore you, sweetpea. oxoxoxoxoxoxoxoxoxoxox

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WINACHST 10/14/2014 11:08PM

    emoticon

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CATS_MEOW_0911 10/14/2014 8:43PM

    Bren, sending much love and positive vibes your way!

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PHOENIX1949 10/14/2014 6:54PM

    emoticon emoticon emoticon

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KAILYNSTAR 10/14/2014 5:13PM

    Operation, save your piggies.

This little piggy went to walk
This little piggy stayed home
This little piggy had marshmallow fluff
And this little piggy had none
And this little piggy, this little piggy cried wee, wee, wee all the way to...ahhh, an epidural...mmmm



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JCARDINAL 10/14/2014 2:24PM

    Sending prayers and lots of good vibes your way. Good call on the panties, you can never have enough!! emoticon emoticon emoticon

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GREGGWEISBROD 10/14/2014 1:48PM

    *hug*

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SWEETNEEY 10/14/2014 9:51AM

    I feel Your pain. But don't give up hope & don't stop living..

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LISALOSING52 10/14/2014 7:34AM

    Praying for you my Dearest Bren. Very gentle emoticon . emoticon

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WARRIORGIRL121 10/14/2014 12:32AM

    Praying for you Bren! emoticon emoticon emoticon

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SERIOUSLIM 10/13/2014 7:20PM

    Jitzuroe, you show true grace under pressure!
I will be thinking of you tomorrow emoticon and praying for painless. light feet for you. emoticon
Rachel (seriouslim)

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MEWHENRYSMAMA 10/13/2014 7:08PM

    Oh, my dear friend! I just can't imagine! I will keep you in my thoughts and prayers, send healing light, good juju, and healing hugs! I hope you have success with this treatment and it at least buys you time for the true solution! I wish I could visit you...but I am a message away and if you are up to it I will to drop buy!
Love you!
Mary

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CLOVER2 10/13/2014 5:02PM

    You are in my prayers. Like Mama said, you have to be one of the bravest people on the planet.
emoticon emoticon

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AAAACK 10/13/2014 2:11PM

    Can you imagine what an awesome world it would be if Nutella and cookies really DID heal everything?! I mean, you'd get to eat tons of the stuff to keep Ethel away.

I'm bummed for you that you have to go through this and trying to find a silver lining, I came up with this: you have a good pain doc who is on top of stuff enough to get this just-in-time solution to help your feet.

Of course, I'm over here thinking about you, hoping all the best for you, and that this next chapter is more of a cakewalk than you could have imagined. Wait, did I say cake?! Oops, ah, more of a breeze! I realize this is mega wishful thinking, but I can't help it, I DO wish great things for you.
emoticon emoticon emoticon that one's for the silver linings I know you'll be looking for emoticon and that's for the super hero that you are!

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SLIMMERJESSE 10/13/2014 1:30PM

    Sending positive energy your way.

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4ANEWME2DAY 10/13/2014 1:17PM

    emoticon praying for you. emoticon emoticon emoticon wishes.

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MAMADWARF 10/13/2014 1:16PM

    Bren, of the people I have ever met in my life, You truly are one of a kind. You face your challenges head on and with humor even in the crappiest circumstances. I am praying for you and your feet and every thing else. I love you, girl. You are my hero.

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My Body Isn't a Wonderland. It's an Obstacle Course!

Wednesday, September 24, 2014

Internal questioning dialogue:
Do I count the full amount of exercise minutes even though I had to sit in a chair, instead of standing up to do all of the exercises?
Am I being a cheater?

I only logged 8 min of a 10 min workout today since my foot cramped up so badly that I had to practically stop, drop and roll to get the cramp out. Seemed logical to only log 8 min since the foot cramps are out of my control. Done. No biggie.

Then my mind wandered to physical activities that kind of physically attack you back. i.e. Mud Runs, Gladiator races and other fun runs which are littered with challenging obstacles.
My life with chronic pain is in fact littered with challenging obstacles!

Some days I have use of my hands. Most days I don't. Some days I can put weight on my toes when I walk. Most days I can't due to blisters and ulcers.

I found myself doing exercises from the Spark video library recently [LOVE those things. Thank you Spark for making them free!], and I was getting frustrated with myself when I could not complete the video I had started. This was becoming a common occurrence.
I questioned whether or not I was being a greedy exercise minute hoarder while logging onto Spark.

Here's my conundrum: if the Spark 10 minute seated arm video involves an exercise that my fingers just cannot comply with (Eeks Coach Nicole, you want me to raise my weights over my head when my fingers don't want to hold onto the measly 1 pound weights? That would be a disaster!). So I decided substitute another exercise that I could do for that minute until the exercise rotation changed (bicep curls).

Am I cutting myself short of truly earned exercise minutes due to the swap? It certainly wasn't a healthy goal to turn myself into a red headed unicorn with a Mt. Fuji sized bump on my forehead. I was fully aware that I would have dropped that weight since my fingers were 'no work-ey' that day. So I did something else.

In the wonderful words of the beloved Bernie Mac: "let me break it down like a fraction":

The potato sack race of an obstacle course dictates that one of your legs is compromised, right? I can totally relate. Some days demand hobbling around on one leg since the other hurts too much.

Carrying your partner over your shoulder or doing a Heavy Haul on a Mud Run slows you down considerably, but builds your endurance and strength, right? I go through seasons of swelling and edema in my body (umm, like now). That's additional weight no one wants to schlep around. But you have to try!

Fighting your way through a mud pit that has a vice-grip of your feet (and running shoes! Duct tape them on people!) can't be done at Flo Jo speed. That obstacle wouldn't be discounted, but rather appreciated for the intensity of it.
Constant edema and pain certainly make me feel as if I'm dragging around cement filled feet, kinda like the mud. Eeew.

Ladder walls can't be done gracefully unless you are a giant octopus. Pretty sure I look clumsy at times during many exercises, but I'm always striving for good form.

I've done fun runs and obstacle course races before my illness surfaced to join the party of my life. I still had to train for them, regardless of how I performed come race day.

I try to never sit still if I come up against an exercise (or two, or eeks, even three!) that Ethel says 'no' to. I'll do some shadow boxing or simple isometric exercises (squeeze baby, SQUEEZE!). Maybe a few stiff legged dead lifts and then try to touch my toes (not actually TOUCHING my angry pain-filled toes though, good grief. The horror!). Catch my drift?

Do I deserve all of the minutes I log, and give myself a generous (gentle) pat on the back for a job well done?
I am doing my best with each workout. I am being actively creative if that's even a term.

Or should I nix any minutes that I am unable to do the exact exercise move on the video, even though I'm modifying?

Something to ponder...

Check her out. Olive is flexing her puppy muscles.



'Nuff said

  
  Member Comments About This Blog Post:

CTUPTON 10/6/2014 11:22AM

    emoticon I wish I could take all the pain away!

chris

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KAILYNSTAR 9/30/2014 3:10PM

    Honestly, I would accept what you can do in substitute for what you're 'supposed' to do. I mean, there are some things I cannot do. No way can I do any kind of exercise which requires me to put weight on my hands. No way. I substitute.

You're doing great. Don't be hard on yourself.

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TRENTDREAMER 9/27/2014 1:18PM

    I really applaud you for exercising. You deserve every minute that you log. We all struggle with the "is something below what we were once capable of doing..?" question.

"Or should I nix any minutes that I am unable to do the exact exercise move on the video, even though I'm modifying? "
* Absolutely not. They count. Exercise is exercise. Modifications are part of exercise routines for that very reason.

"and give myself a generous (gentle) pat on the back for a job well done? "
* No, give yourself a full hearty pat on the back (metaphorically of course) for keeping up the good fight when struggling.

Comment edited on: 9/27/2014 1:25:27 PM

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JCARDINAL 9/26/2014 1:26PM

    Don't be silly. Of course you get full minutes. Even when you're in a class they tell you to modify what you can't do. I think you should get double credit because you're doing it with the challenge of Ethyl on your back. Hang in there sweetie! Your puppy is so cute! emoticon emoticon

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NUMD97 9/25/2014 5:38PM

    Absolutely give yourself the minute credits. Listen, Bren, I have a secret for ya: You DID exercise. You did not throw your hands up and simply walk away. You substituted what you could not do, due to "Ethel", and still did some form of exercise. SparkPeople has a section for people who could only do chair exercises. So, you see, it is valid. Any form of exercise to keep us limber, is good exercise, no matter what. When we can do better, we will.

Keep up the GREAT work! You are an inspiration to so many, Bren.

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AAAACK 9/24/2014 5:04PM

    Probably you're underreporting! Modification is a critical part of any exercise program for anyone who doesn't want to get hurt. I used to do bootcamp classes with a trainer. It was an invite-only class (he didn't like crybabies). So when I had my shoulder injury, I was going to stop going, but he said, no! keep coming, we'll modify it so you still get as good of a workout, but without injuring you more, I know what to do, don't worry. So I did a modified boot camp, and I can tell you, it was STILL a total butt kicker. Modification isn't quitting. You GIVE yourself those minutes!! Don't cheat yourself. You're amazing because of your modifications - because you mod instead of quit. I adore that about you. You NEVER quit! And you should give yourself full credit. Always. In all things.

If you really want to know, borrow a heart rate monitor and wear it, you'll see that you're still getting a workout through your modifications (and probably while writhing around with a foot cramp!).

Comment edited on: 9/24/2014 5:06:58 PM

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FREGGIE 9/24/2014 3:29PM

    I think it all comes down to common sense. My personal idea is that what matters is that you take the time and make the effort to do something that will help your body and health. If you do that for x minutes you have every right to log those x minutes. In the end it is not the amount of minutes that matter. It's the actual impact that your efforts have on your wellbeing.
I'm very sorry that you have all those obstacles.

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LISALOSING52 9/24/2014 2:14PM

    Of course those minutes count. Regardless if it's modified to something else or not. They all count .when you consider all of your obstacles that you encounter daily it is probably more than what you are counting. Hugs and Kisses to you and Olive emoticon
Now S Q U E E Z E! emoticon emoticon emoticon

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DSJB9999 9/24/2014 2:12PM

    Olive does look lovely! Of course you can count that exercise, we are moving all the time and we don't count all that .

I hope that makes you feel better. Love from Donna xxx emoticon emoticon

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MEWHENRYSMAMA 9/24/2014 1:58PM

    P.S. I LOVE Olive!
I see she mastered the isometric exercises...the SQUEEZE...LOL.
Give that dog a bone (and hug from Aunt Mary)!

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MEWHENRYSMAMA 9/24/2014 1:56PM

    Sweet Pea!
You absolutely can count those minutes of exercise, because you ARE exercising...just because you have to substitute what you an do...you still exercise!
I am so very sorry you have so much to deal with....it sure is an obstacle course! What is your illness called again...I want to better understand it! You are in my thoughts and prayers!
Keep up the great work...
Love you!
Mary

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MAMADWARF 9/24/2014 1:55PM

    anything counts. and just because you dont complete it THIS time, doesnt mean it isnt somthing to shoot for. You are dealing with alot of challenges. give yourself a break. and give sweet olive and yourself a kiss from me

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Umm, I don't have enough underwear for that...

Wednesday, September 03, 2014

As Ricky Ricardo says, "lemme splain". But first I wanted to share why I needed to give my body a fighting chance. See, apparently my home has it in for me, really.

My pain has continually crept up because of a few things that were out of my control:
Our very specialized (and pricy) 2-year-old air conditioning system flopped and basically died. It's been really warm this summer in CA. AC is critical for my daily life.

My husband left a puddle of water on the floor and forgot to clean it up. Of course I slipped in it later, jabbed my fingers into cupboards, cracking open one of my life-saver sized ulcers. Gross, disgusting. Blood everywhere. Ruined some clothing and a nice towel. Classic me.

A couple of days later I stepped on a straight pin that was sticking out of the bathroom rug. Accidentally fell off my husband's new shirt when he was trying it on. Whoops.

Waddled into the kitchen to get some water the next day and felt a searing burn under my left foot. I was stuck to a dried puddle of lime juice from an accidental spill by my beloved the night prior. Another accident left behind unintentionally.

Icing on the cake: that same morning I went to take a shower and suddenly both of my feet felt like they were sizzling once I stepped into the shower stall. Hubbie forgot to tell me that he sprayed bleach since he was going to scrub it later.

Was my husband trying to kill me? No, not at all I'm sure. I was a clumsy goofball before my health tanked, believe me.
Useless insider info: I was never to be trusted around sharp knives or garbage disposals. Seriously!
Thank goodness there weren't any super stealthy ninja weapons in our house, right? I'd have been impaled on a pair of nunchucks for sure...

But those teeny things kind of pushed my pain into overdrive. And the lack of air conditioning in our living room added insult to injury (err...injuries?). The finger that I cracked open and my feet are still absolutely throbbing and angry days later. Silly.

My body was begging for some pain relief treatment in-hospital, but I had an opportunity to try something new - and had to sacrifice potential pain relief to do it.
Have been talking to my doctors both at the Mayo Clinic and here at Stanford about doing a trial of IVIG therapy. I was told that I am the first EM patient to undergo this type of therapy from a Stanford. Yay me. Where's my sash and trophy???

I've read about people with certain autoimmune diseases achieving amazing results after IVIG. Since I don't respond well to any of the treatments available for EM, I thought this might be something fantastic to try. They all agreed.

To keep it short, IVIG is a treatment via IV that contains antibodies collected from the plasma of healthy donors. IVIG is not used to treat pain, but can help the body to heal and prevent future internal immune system warfare.

Maybe it will slow down my body from continually triggering its own internal breakdown for a few weeks. A 'reset button' for my immune system. I'm in!

Wouldn't it be supercalifragilisticexpialidocious If it worked?!? If I could FINALLY make better progress in healing from my biopsies from the Mayo Clinic in July? Paper cuts might heal faster, bruising might not be so severe. And then there are those threatening puddles of lime juice...
I'm slower than molasses when it comes to healing. Shoot, I'm slower than molasses in the Midwest - in the middle of winter - poured onto an icy cold street, actually. Wouldn't it be fun to change that around for a bit?

Oooh, and get back to a more mobile life? To dust off my workout DVDs and be able to confidently hold a pair of 5lb weights to feel the burn baby! Nab back some sexy muscle definition? Nice. Let's go doc, I've got plans here!

I have to remind myself that I did not come into the hospital because I was in a lot of pain. Gonna have to suck it up since the docs don't want to mix pain management drugs with IVIG.
Perhaps this treatment will communicate to all of my teeny tiny immune system tidbits that they should hold hands and be friends instead of enemies. You know, sing a round of Kumbay-ya around the burning campfire of Ethel that burns so bright, right?

Oh yes, the underwear wail [Ha!]. Initially this was supposed to be a single round of IVIG therapy, and should have taken three days max. Since I haven't had any of the scary creepy side effects thus far [anaphylactic shock being just one of those. Holy Crimini!], they decided to try 2 rounds of IVIG back to back. That translates to a 5+ day stay. I've got an underwear crisis people!

Time to recognize my silver linings and wrap things up.
I'm in a private room again due to the temperature demands of my EM/Ethel. My room is nice and dark. The AC works. I've got ice packs all around me and the staff is great.

Bonus: I can see the Life Flight helipad just outside my window. Really, it's so freaking close! Just a tad too loud for my headache since these life saving heroes have been busy. Entertaining though, so I'll just get past the noise. What an amazing sight!

I wonder if Amazon prime will deliver cotton undies to the hospital? Why is this funny?

' Nuff Said.

  
  Member Comments About This Blog Post:

STESSOUTCHICK2 9/23/2014 9:45PM

    I so relate


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GREGGWEISBROD 9/8/2014 10:21AM

    God bless your husband, but wow... that boy needs to take better care. :( As always though, your cheerful and hope-filled disposition is an absolute inspiration! Hope you got your undies! :D

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JCARDINAL 9/6/2014 2:58PM

    I hope the IVIG works wonders for you! I've been hearing great things about it and it was featured in my latest Lupus magazine. I feel your pain on the underwear situation, I've been in that predicament a few times. Where is 1-800-UNDERWEAR when you need it. You sit back and enjoy that AC and heal your body. emoticon emoticon

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TRENTDREAMER 9/6/2014 12:47PM

    Really hope that it works and heals you!

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KAILYNSTAR 9/5/2014 6:13PM

    Time for your hubby to come to the rescue and bring you some underwear.

There are times when a person enters the hospital thinking that it would be a couple of days and then (like me) ended up there for over a week!

I hope this works for you. I really do.

Take care of yourself and make those nurses your slaves. If the AC decides not to work...you can have the nurses standing by your bed, fanning you with those big, long feathered fans! :)

Hugs!!!!!



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KIKKI-G 9/4/2014 1:07PM

    Here's to this working for you & like always keep your amazingly positive outlook and smile face on.
Btw,you are too freaking hilarious although all those accidents seem horrible timing! My man is just as forgetful & I am equally as clumsy!

Thinking of your lady & all the best.


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AAAACK 9/4/2014 12:40PM

    I'm impressed that they can keep the temperature lower in one room than another. I remember back to all of my hospital stays when I just dealt with whatever temps they had. I never dreamed they could control temps in individual rooms. How cool is that? ha ha.

IVIG - I hope that this treatment does wonders for you!! You've always got such a great attitude going into these new things, and I know this one is no different. If attitude really was everything, you'd already be feeling better. I hope that you just feel better and better with each IVIG treatment.

Pain pain go away.
emoticon



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CATS_MEOW_0911 9/4/2014 11:13AM

    Bren, I am so hoping the therapy works and you finally get some relief! Thinking of you!

Hugs,
Erin

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WARRIORGIRL121 9/3/2014 6:20PM

    Praying for you, sweetie, and keeping expectations of good for you! emoticon emoticon

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MEWHENRYSMAMA 9/3/2014 4:59PM

    My Dear Bren!
I am thinking and praying for you!
I hope this works for you and you get relief and a better future!
Love & Healing Hugs,
Mary

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KBURGOS05 9/3/2014 4:26PM

    you seem to be in good spirits. Good Luck with everything.

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MAMADWARF 9/3/2014 3:42PM

    You are just one of a kind my dear! I REALLLLLLLLLY hope this works for you! HOW HAPPY WOULD I BE???? I would jump around in MY underwear and sing and dance for you (until you can do it yourself). Oh girl, I FEEL the healing begin and I HOPE you are feeling it too!! Good news ahead!!!!

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PICKIE98 9/3/2014 2:04PM

    Underwear? DEPENDS on what kind you want!! If it is V.S brand, you are wasting your time.. Hospital personnel could care less what it looks like, they just rip it off and whip it on the floor anyway.. It is not Victoria's Secret anymore.

There is a Spark friend of mine that has been getting IVIG therapy for about a year now.. They have to watch her BP and elevated temp is another thing.. Headaches, chills,etc are the norm. She takes her for her MG symptoms. It helps a lot.

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PATTYGIVENS 9/3/2014 1:51PM

  OH MY... BETTER DAYS AHEAD

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CANNIE50 9/3/2014 1:49PM

    I have had a feeling, ever since you told me about the IVIG treatment, that this may actually be a ray of healing, and I am praying (while planking, by the way) that it is. You so deserve some true relief from all the terrible pain. I am glad you are surrounded by people and objects devoted to lessening some of your awful discomfort. I am glad you have a view that momentarily distracts you from what you are going through. I am hoping that you get a delivery of some cute new skivvies, and that your man cleans up all the hazardous sites in your home before you go home! emoticon Thinking of you, as I so often do, sweetpea. emoticon

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SLIMMERJESSE 9/3/2014 1:44PM

    Yikes! Wishing you better days.

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I don't need to count my blessings. They surround me!

Thursday, July 24, 2014

As the bubbling, gurgling tar-like funk starts to recede, I can now see remnants of my true self underneath (phew). And I am able to better reflect on the shiny gems set throughout last week's Mayo Clinic trip, not just the pain and the tears.

To kick things off, the flight attendants were made aware of my disease and my special needs for travel. They were very attentive, and brought me ice packs often. That was great.

There was an issue with the air conditioning where I stayed. They did all that they could, but they were simply not able to get the air-conditioning to operate with the demands of Ethel. I needed the room to be at a maximum of 60░F. Honestly I would've preferred it to be lower than that, but commercial air conditioning just can't compete with those demands 24/7.

Unfortunately they couldn't get the temps down below 70░, and there is currently a heat wave going on in Minnesota [90░ are you kidding me?], so I was in a tight spot. Massive swelling, bloody noses and lots of pain. Kind of scary since the bloodwork, biopsies and the pain-filled bits that was to come with the Mayo Clinic had not even started yet.
The maintenance team actually hunted online for some type of DIY contraption to cool me down. It looked like something out of an old I Love Lucy episode, but oh my goodness it actually did work! I just wished it had more force, since the R2D2 looking contraption needed to be parked about 6 inches from me. But still, I'm blown away (Har Har, blown away) that these guys even did this for me. Another blessing.




In case you're wondering, this is a bucket from the hardware store, and inside is a water jug that was frozen solid. On top is a tiny desktop fan to push the cold air out through the PVC pipes. Pretty creative huh?

The lead doctor on my case at the Mayo Clinic decided to let us come home a week early, and said that she would work with Stanford Hospital out here in CA when my testing and surgery results came back. *Wow*

She understood how hard things were for me, and how much pain I was in. Allowing us to come home earlier meant a much cooler climate was on the horizon for me, as our air-conditioning worked better than what we had currently in Minnesota. We were not expecting to come home days early, so that was yet another huge blessing.

The airline agreed to waive the penalties involved in getting us home. Wouldn't you know, there is a Mayo Clinic discount available.

When we got home, my husband went to go pick up our cat JitZu from where we were having her boarded. We were told that someone had anonymously paid our bill. That was not cheap. Wow, we were so thankful...

The next morning my husband drove across town to pick up our dog Olive from where she was being boarded. The owners told him that they were not going to be charging us the $450 fee, since they knew that we will were struggling with my illness on all levels. They said that they wanted to help me in some way if they could.
Again, what a massive blessing.

I had mentioned to a Spark friend that even while at my lowest, I still felt as though God was carrying me through. And I can look back and definitely see that sprinkled throughout the entire trip now. Thank you Lord!

Incredible (gentle) hugs to you all for being such pillars of strength for me. Directing your prayers and strength when I truly needed all of them was not taken for granted. YOU are blessings in my life!

And the icing on the cake, look what was parked outside across from the hospital. It's the Wiener Mobile!!! Talk about getting a great laugh when one was truly needed. My husband pushed me through the lobby in my wheelchair and we saw this last week.


Of course I had to ask if this was the new hospital shuttle. Sadly, it was notů

'Nuff said.

  
  Member Comments About This Blog Post:

EDENFELL 8/10/2014 4:48PM

    Wishing you lots more good things and treatment that gets rid of all the pain you're going through!{{hugs}} It's so touching when people come through with blessings during tough times. Sending you tons of positive thoughts and fairy dust! emoticon

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NIGHTSKYSTAR 8/3/2014 6:33PM

    You are, indeed, blessed. I think without my pain i wouldnt appreciate things as much..and have as positive of an attitude.
How wonderful of your gifters to pay those bills..and the hotel staff..and the airline!! i'm smiling at all the good vibes here...
AS always please take care and i am here if you need an ear!

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DSJB9999 8/1/2014 3:36AM

    emoticon

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GREGGWEISBROD 7/28/2014 1:50PM

    I'd say the biggest blessing is your fantastic sense of humor!!! :D I think that navigating through your life would be impossible without it. I'm so incredibly amazed by you. :)

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CANNIE50 7/27/2014 5:10PM

    It is hard to feel grateful and count blessings when one is in terrible pain. It is so indicative of your shiny spirit that you are able and willing to do this. Gratitude is such a game changer. I am so glad you have been surrounded by blessings. You deserve each and every one, and more more more. emoticon

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CTUPTON 7/26/2014 9:21AM

    Blessings abound! Weinermobile for a much needed laugh, people helping you to pay the pet bills, R2D2 to cool you off ! Thank you for writing this blog. I will go look for my own blessings now! chris

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FREGGIE 7/25/2014 3:24AM

    What a wonderful blog! You have a very good spirit.
I hope you'll feel better soon. emoticon emoticon emoticon

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RORYLYONS 7/25/2014 2:36AM

    I'm delighted to hear you had an angel at every corner Bren....God is so good and you are especially deserving of all his blessings to you and your dh. emoticon

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NUOVAELLE 7/25/2014 1:38AM

    You deserved each and every one of those blessings, Bren, and more. A person who finds the courage through all this pain to acknowledge their blessings and be thankful for them, has only one name: strong.
You are still in my prayers. My thoughts are always with you.
emoticon

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AAAACK 7/24/2014 10:27PM

    It's so great that Mayo was willing to work with Stanford, maybe they can develop a good relationship there and save you other trips, and maybe they'll put their heads together and come up with something that whups Ethel's butt!

I hope nothing but good things for you!

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WARRIORGIRL121 7/24/2014 9:28PM

    That is awesome to hear, Bren - God IS carrying you and helping you! That is the Lord taking care of you! I'm keeping you in prayer, honey! Don't give up. Help is flowing your way. emoticon emoticon Karen

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ALLYCANDOIT 7/24/2014 8:28PM

    emoticon
Wow! You weren't kidding. You were totally surrounded by God's blessings.

Really neat a/c device. I had to show my Engineer husband and he loved it.

Want to hear about your Birthday. The weiner wagon was really cool as well as the airlines discount.

Won't stop praying for you!

Ally

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MAMADWARF 7/24/2014 7:10PM

    Bren, you were surely surrounded by God's love and people. what a wonderful blessing and I dont know anyone that deserves it more... Please keep us posted on how you are doing...Love ya, girl!

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TIME4CARRI 7/24/2014 5:46PM

    God is so good!
This stuff is way to hard to see in the dark moments but when we get to come up for air it is so apparent. I'm so glad you are feeling better (slowly...) keep us updated on the results and we are still praying it up for you here. Rest and be extra kind to yourself on behalf of all of us who wish we were close enough to. emoticon emoticon (gently)

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SLIMMERJESSE 7/24/2014 3:18PM

    Wow, what kindness abounded for you. And so wonderful that you felt God pulling for you throughout your struggle. Just wow is all I can say right now. Big hug.

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MEWHENRYSMAMA 7/24/2014 2:43PM

    You are indeed loved, thought about, prayed for, hugged and SPECIAL....
I am glad you had so many examples of goodness mixed into your tough experience and pain
to keep you going!
AND, get outta here, the appearance of the Wiener Mobile? A true sign from heaven you are being
Looked out after.....LOVE IT!!!!
Love & Healing Hugs,
Mary

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MISSB8604 7/24/2014 2:39PM

    God is SO good.

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_RAMONA 7/24/2014 2:17PM

    So glad the curtain is lifting!
emoticon

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JCARDINAL 7/24/2014 2:04PM

    It is an honor and a privilege to know you Bren! Your strength inspires me when I want to give up I wish you tons of cool air and a cure. emoticon

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