Merry-go-round and round and round and round

Cyclical...its all cyclical, right? There was a point in my life where I felt that the same people, the same events, the same mistakes, the same everything...kept happening over, and over again, and I had no control. Today is one of those days. It feels very familiar.

However, amidst the drama in my mind, today I very well know this merry-go-round will be my ride, only if I let that happen...if I participate. The fact that I'm aware of this much, means that I am a willing participant, if one at all, yes? Then today, I knowingly and willing choose to avoid being sucked into the swirling mass of crazy, that can so easily engulf my world.

We all deal with this ...you know it, I know it... Owning the fact that you contribute to this same cycle, is pretty huge. Today, I had a few things trigger me into déjà vu scenarios. Phone calls, catheter discomfort, washing hair with a cup, others' emotions, listening to the same stories, being greeted by familiar energy levels, receiving emails from someone once close...the list goes on. It can bring you down! ...it does me. So what do you do?

You stop. You try to understand why YOU are reacting, and how YOU may be causing or enabling the issue. Maybe the issue only exist in your mind...and if so...why? Maybe YOU need to communicate to someone other than that cute voice in your head that never leads you astray (hahahaha), or maybe YOU need to stop what you're doing and clear your mind. Or maybe YOU need to rest and refocus. Its ok to wear out, and be tired. We are human. Its ok to disengage for a bit, and step off the merry-go-round.

Ode to a Permacath

I posted this to my Facebook page on Friday...it made me laugh!
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(hahaha...inspired today, while in the waiting room anticipating removal of cath #2)

Oh crazy looking permacath, I never dreamt we'd meet, but now that we have, of course I feel you're rather neat.

Thanks for continued support through this drawn out, bloody mess. As a quirky type of life line, you really are the best.

But please forgive my smile and glee that you will not be around. I'm excited for the weekend, and the chance to sleep face down.

When next we meet, for now a third time, early Monday morn, forgive my 'blah' expression, as I'm feeling really torn.

I know you will do your best again, to remain infection free. If you don’t, you little rascal, I’ll take you over my knee!

"May not be fun, but it's gotta be done"

I wish you could hear me singing right now. The title of this blog is based on a song (there were so many) that mom taught us to sing growing up. We sang this song while doing chores or working in the garden. "May not be fun, but its gotta be done, may not be fun, but its gotta be done. Pick those beans, shuck that corn, mop that floor, and it's still not done. Its called Work..its called work." Ok, I'm inserting my own lyrics now, but you get the picture. We would sing in order to distract ourselves, while we worked. Creative distraction for a mother of 3 energetic girls!

In my women's bible study group, we are focusing on the book of Daniel. One of the versus Beth Moore touched on, really spoke to me. John 11:4 - When he heard this, Jesus said, "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it." Of course I clung to the verse that talked about me (yes, it was written just for me, find your own). As I listened to several of the other versus we covered last night, many had a similar tone, but this one became my distracting song and inspiration.

As much as I like to focus on Myasthenia Gravis and the stupidity of this disease, I sometimes get lost in the details and forget what this is all about. My body is a test lab...I've accepted this and brag about it. My heart is grateful that I can still feel pain, so many others can not. My mind is focused. I continue to want to know more about MG and the stupidity of it all, but through Daniel, I'm reminded that while we struggle, we are also meant to shine. Refine, and shine! "May not be fun, but it's gotta be done...may not be fun, but its gotta be done"

Perma what?

Oh the saga continues, and if nothing else is learned in life, know that nothing is permanent..not even a permacath...

Just met with the Cardiovascular surgeon who Ive come to adore and hug on sight. The fistula is healing, but not likely to return to pre-December status. Who knows why it fizzled?...but it did. We'll watch it, but not with optimism...more curiosity than anything.

I had an 'oil change' early today, and Nephrologists #2 agreed with #1 from last week, that the permacath should be removed and a new one installed. The infection just wont clear and its too risky to maintain this line. Lord knows I do not want to deal with sepsis blood again!

So, our plan is to have Dr. Cardio remove the current permacath this Friday after the Friday pheresis treatment enjoy a cath-holiday (I thought this was a new piece of equipment...nah, just a holiday from a catheter for a short period of time) over the weekend, then go in for installation of a new catheter by Radiologist guided by Xray, on Monday...just in time for my next 'oil change' on Tuesday AM. Hows that for team work! Thank goodness for the Doctors who do grow to know you and and who know each other.

I learned Monday, that an iron study which I was being recommended for and screen for, I failed to qualify for. My kidneys are working too well for the study! :) ...I'll accept this failure...

All this said, life is good. All has been expected, is in good timing, and Dr. Cardio was singing 'Pants on the ground' today....hahahaha

Daniel and the Fistula

This week feels like its been a rough one. Monday began with a fistualgram, that became a fistualgraph, that resulted with a 'thrill' that remains rather quiet. Now, you might read this and have immediately thought, "Rachel is being silly with her nonsense words." They're real..and I'll let you Google them all.

My fistula was created in August, 2009. We (Lee, myself and the Drs.) took great caution and care with this because my anatomy provided small veins and arteries to begin with. With that, we waited to use the fistula until is was just right. It was just right in December...and we elected to perform the first access this month. Over the month's time, the fistula fizzled. Feels a bit like losing a friend.

SO, in an effort to save the rascal, the procedure was scheduled for Monday. Ouch, but a learning experience. Its Friday, the fistual remains quiet, and I'm told the catheter in my chest may need to be removed and replaced. Ouch again...

We're studying Daniel in our small group, and moving through the Daniel's fast as I type. One thing sticks in my mind, about Daniel not wanting to eat from the King's table. He was avoiding the unclean food and the related gluttony, only asking for vegetables. He was humble and simple and wanting only to shine and glorify God.

Moving through this fast, and craving coffee and sweet tea as I do, I'm moved to remember than I can do with less. I can survive a few hunger pains. When I get complacent...I can deal with a little shake up, a little more discomfort, and little less convenience. With God, and we can shine a little brighter.

Not Sure

I really dont know if I have a good title for this blog...other than 'not sure'. As I type this though, I think it rather sums up what I'm thinking. I'm not sure.

We learned yesterday, that the fistual created in my arm, last August...which we've been waiting, and waiting, cautiously waiting...to use, may no longer be a viable access point. WTH! The Dr. was ready to go last month, and I was shocked, b/c we'd waited so long. We agreed to hold off 1 more month, to get through the holidays. Well as things have gone, in the last month, something occured that has quieted the 'thrill' of the fistula. Monday, we'll go in for a procedure called a fistulagram..like an angiogram... I dont know how you properly spell that..but the balloon in the vien process. Maybe we can save the dang thing. Everyone worked hard to create it, and by golly we've spent a lot of energy getting ready for it.

Oddly enough, the thought of using it scares me, but if the fistula is not sucessfully used, then the catheter must remain in my chest. In fact the darn catheter is trying to get infected on me. I've been on anitbiotics for the past few weeks, trying to get rid of the...never mind. We'll just say its just healing nicely! ;) Seeing as how I've grown rather attached to this aparatus in my chest, I'll continue to care for it and pray it hangs in there, until something better comes along.

Ok, thats all I've got. Sarah suggested I create a blog, and so I'll try picking this back up. Welcome to 2010.