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 not…
Monday, July 21, 2014
I'm struggling with such high pain since this second trip to the Mayo Clinic. I feel like I'm just enveloped in pain pain pain.
I'm used to sucking it up in my own way and trudging through it. But this pain is like a pool of molasses though, too thick.
One of my dearest Spark friends reminded me that I was not in this alone. That there are many who care about me, and would probably like to know that I'm in a painful place currently. She told me that it is in fact a strength to be willing to ask for help. And that's precisely what I needed to hear.
Because the encouraging words from others; the prayers, the hugs, even those good vibes, are all things that are so valuable right now. My reserves are low, and I am quite weepy lately.
I try to always look for the silver lining. More times than not, I regularly psych myself up to arm wrestle with any negativity that heads my way, threatening me. I try not to wallow or mope.
Have to find something, no matter how small, to be proud of every single day. I'm not doing that currently.
Going through diagnostic tests at the Mayo Clinic is not an easy thing to do. But it is necessary. It is important. It is what I am relying on to formulate my treatment, or even better, a cure. But it is pain-filled, and requires an extra helping of resillience and bravery. I feel tapped out!
I also had surgery this past Wednesday, and that is what is causing me the most pain currently. I was told that this biopsy [called a Sural nerve biopsy], was a fairly simple procedure, and one that the Mayo Clinic does literally every day. I would have a few stitches, some soreness, and heal well.
The surgery ended up being much more involved, and I am still unable to stand or put weight on that foot (5 days later). Being forced to use crutches when your disease already affects your limbs + nursing a biopsy on one hand makes movement more tricky.
I had to take the dressing off of my lower leg 48 hours after surgery, and that visual confirmed why I felt so much pain radiating from my left calf area.
I started counting the stitches. 1, 2, 3, 4... I stopped at 20 or so since my eyes just welled up with more tears.
I was informed this morning by my rheumatologist that special precautions were taken because my disease causes intense swelling in my limbs daily, and they did not want me to rip my stitches (as I had done recently).
My goodness, I'm so sorry to just go on whining about this! I'm really not myself I guess. I meant to just post a brief blog asking for your kind thoughts, good vibes. Perhaps a whispered prayer and well wishes if you wouldn't mind.
I am thankful to be home. I was supposed to still be at the Mayo Clinic this week, but the doctors agreed that I could go home early. I am trying to smile about that. Who wants to spend their 40th birthday at the hospital out-of-state? Oh yeah, tomorrow is my birthday. The big 40. I'm certainly not at the level of health that I had hoped to be at when I turned 40. But here I am nonetheless. I'm sure that's what is adding depth to some of this endless well of tears. Good grief!
It's just that I seem to be forgetting some of the critical positive behavior that had become daily habit to me (with MUCH practice, but still, a habit I tried to nurture). Perhaps because many areas of my mind seem to be overflowing with the pain in my body? Stealing my sleep, stifling my giggles, and rendering me sofa-bound for days now.
Thank you to my Spark friend for nudging me to remember the huge obstacles I have already overcome with this second trip from CA to Minnesota.
I kept my sanity on flights both to and from the Mayo Clinic. These were long and torturous flights for me, but I did it. Air pressure really does a number on a body that already deals with major swelling daily. So yes, there's that.
I made it through another week filled with multiple needle sticks, stitches, surgery (barfy general anesthesia, ugh), sutures, and the naseau side effects of medications.
Unfortunately my trip was also filled with frowns from so many of the doctors I saw, who told me that they wished they could do more. But shoot, they're trying. There are so many sick people who don't ever get a chance to go to the Mayo Clinic for their illnesses, and here I was on my second trip. Yes, I'm thankful for that.
Why does my spirit feel so squashed? I feel like my life is like those last few seconds of Warner Brothers cartoons from so many years ago, closing in until Bugs Bunny is just a tiny little dot. But for me the borders are pain on all sides, closing in.
I'm supposed to say that "I will get through this pain today" out loud, even if I don't completely believe it.
I will get through this pain today!
Am still in dire need of finding my smile. I'm trying, but I need your help!
Thank you for granting me the freedom to share my burden.
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.
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!
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...
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