We kinda grew apart in the late
eighties, I would occasionally see her and my other Millerstown friends on my sporadic
trips back to Ohio. That was in the days
before email, texting, tweeting and even cell phones. We had paper address books and placed handwritten
letters (before computers were big) in envelopes and put a stamp on it and away
it went. My life was busy seeing the
world in the US Navy and I assumed hers was busy practicing veterinary
medicine, which is what she went to school for.
Actually it was Animal Science and Veterinary Technology as I just
learned from her information page on Facebook.
It seems weird how close we all were back in the days of drinking beer
and smoking dope on the stoop in Millerstown compared to now that we are
loosely reconnected via the Facebook thing.
Seems weird to even say it that way, having moved away from there and
never going back it seems like memories from whole different part of my life
that resides in a light fog, remaining just out of focus.
There were a few years, from
about 1979 to 1983 (when I left) and most likely beyond that where Millerstown
had quite a crop of delinquents (that is an over dramatization, most were not delinquents
but through my drunk and stoned eyes they appeared that way so that is my
perception not the actual reality). At
least that is how I remember it. There
were a lot of us kids that hung out in those days, there were the Bodey’s and
Basey’s, the Ervin’s and Lockwoods, the Vanscoy’s, Bronne’s (sp) and
Swearingen’s, and Scott’s, Pond’s and a Williamson. Some of us were thick as thieves and others
were associated by being from the same town that had a population of probably
100. I have never made a conscience effort
to disassociate myself with my origins but it seems the only folks I ever
really stayed in touch with were the Vanscoy’s.
I really don’t know why that is.
We all seemed indestructible back
then, I suppose that is true of all kids but to my limited knowledge all of us Millerstowners
are still kicking around in one place or another. I have lost many friends and family in my
life, young, old, sick, healthy but I have not lost any friends from my far
back youth that I was close with. Now to
be clear I HAVE NOT lost my friend, but she is facing some pretty tough medical
challenges, as you will see when you read her post. I am not sure what to say or what to do and
why I feel differently than I have about all my other friends who had medical
challenges. Is it because we have known
each other so long? Is it because we
were more than just friends for a while?
Is it because we shared so many experiences during our high school
years? Is it embarrassment that I had no real idea
what she has been up to for the last 20 years?
Is it a blend of all that?
There is a simple pragmatism in
her post, maybe that is what I am missing.
There was never any bullshit with us kids from Millerstown, we were who we
were and if you had a problem with that, well fuck you. That was the attitude we had, not sure why
and not sure if that is prevalent in all small towns but it was like that where
I grew up. Maybe because my work right
now is so not that, my job right now has me playing politics, negotiator and placator. Those are not my strongest skill sets, I can
do it but it tastes like a warm Kroger cross cutter beer (hahaha, for those who
remember how shitty that beer was…… it was the only beer I remember not being
able to drink and throwing out the car window).
I am not sure why but her post,
which is posted in its entirety further down, made a flood of memories come
raging back into my head and I was unprepared for the torrent. Not just about my friend, but all my friends
and my time growing up in small town Ohio.
It is hard to describe really, I grew up in a small town with all the
dynamics that brings to life and have lived my adult life in bigger cities have
experienced all that comes with that. I
am pretty sure I don’t I miss small town life, it is just a vastly different
lifestyle.
Her bravery in the face of such adversity
is admirable, but I would expect nothing less from her, same as when we were
kids – no room for bullshit in her life.
I am unsure what to say……… seems like an awkward silence in the
conversation, if that is even possible when I haven’t actually talked to her
for years. Maybe that is part of it,
guilt for not staying in touch with someone I knew so well back in the
day. I guess we all have this train ride
of life going on and along the way people get on our train and then get
off. Some stay longer than others, some
are on the train for just a few days and others ride all the way to the end
with you. Maybe that is one of the
mysteries of life, who gets on when and how long they stay.
I hurt for my friend and am just
am unsure what to say or how to say it that is not weird or uncomfortable for
either one of us. We have been off each
other’s train ride for so long it just seems…….. I don’t really know what it
seems like. I just want my friend to be
OK and not have to suffer through anything let alone the list of medical issues
she dealing with. I am raising up some
prayers for strength for my great friend and am asking you to do the same.
Here is her post
Kidneys, Creaks and Crohn's.
I don't know exactly why I am writing this note. Maybe to inform, or maybe
to clarify things in print for myself. I'm at a decision making point (again)
with my health and my life. I find having things written down, or in this case,
typed, helps.
In 2006, I was diagnosed with an autoimmune(AI) chronic kidney disease
called Focal Global Glomerulosclerosis.
It is basically your immune system turning on you, and what this type
does is build scar tissue across all the tiny tubes that filter blood and
fluids through the kidneys. My kidneys were working at approx 35% at this time.
Because it slows up the process of fluids going through from kidneys to
bladder, fluid backs up and causes high blood pressure. I had been told I've
probably had this since at least 1999, when I was pregnant with Wyatt. Symptoms
such as the HBP did not show up until 2006.
To remedy this, I take meds for the blood pressure, and was told to stay
on a low protein diet, 30g per day, avoid
beef, pork, dairy, eggs, and high amounts of phosphorus. The proteins in those particular items are
very large when broken down, and are hard for my kidneys to pass through. I
also can not drink a lot of liquids.....period. I cannot take ibuprofen for any
reason because it can shut my kidneys down, nor decongestants bc of blood
pressure meds. I work on my feet 8 hrs a
day, and any fluids I do drink end up in my lower legs(swelling) until I'm home
and can get my feet up. I have dealt with all this for almost 6 yrs now,
changing my diet, getting regular blood tests that monitor everything, reading
anything I could on it-only about 50,000 people with this disease, getting
depressed, angry, then coming to terms with it. I have an awesome
nephrologist-kidney dr, who tells me if I am craving something I'm not supposed
to have, then I must need it, just do it in moderation. The blood tests measure
an important waste product, Creatinine, in your blood stream. Because the
kidneys do not filter correctly, a lot of the waste gets recycled back to the
blood stream. Once that level gets to a certain point, you have to be put on
dialysis.....forever, or until you get a transplant. They go by stages, as in
other diseases, from 1 being mild to 5 being dialysis. I was put at a level 4
in 2006, but have reversed to a stage 3, due to my diet changes. It won't go
back any farther, I was just lucky to catch it fairly early. Back to the waste in the blood though, it
makes you tired, irritable, gives you brain fog, etc... basically toxins in the
blood and less oxygen. And as far as a
transplant, family would be last resort because my body would attack it just as
if it were my own because of being similar genetics. I am currently with 28%
functioning kidneys, with my left being a little worse than the right. It has been fairly smooth sailing since
about 2007 until 2010.
Early spring of 2010, I noticed my hands hurting really bad, especially in
the morning and late evening. Didn't really pay much attention until I went on
a bike ride with the kids, my first and only bike ride of the year. My knees
swelled so big a few days after, I had to call the Doc. She checked me out, did
blood tests, of which the inflammation factor came back really high. She
referred me to a Rheumatologist and after a lot more tests, it was determined I
had Rheumatoid Arthritis. I ended up having both knees drained of fluids, and
after trying to decide what meds to put me on, finally settled on
Plaquenil. Plaquenil is an anti-malarial
drug, and in a class called a DMARD- disease modifying anti rheumatic drug. Go
figure. They don't know how it works but it does help some people. It seems to
help my swelling more than the pain, and guess what, I can't take that damn
ibuprofen bc of my kidneys. The
next safest line of defense is
Methotrexate, which is a chemotherapy drug, and can cause havoc for the
kidneys. Most meds have a black flag, DO NOT TAKE IF YOU HAVE KIDNEY DISEASE. I
am getting to be able to read fine print really good now...lol. My rheumy is
taking a very conservative approach and I am thankful for that. On another note, I would like to clarify
that Rheumatoid Arthritis(RA) is NOT, NOT the same or even close, to
Osteoarthritis. Osteo is from wear and tear to the cartilage between joints. RA
is another autoimmune disease which is your cells attacking yourself. It
generally affects the synovial fluid between joints, but can also damage heart,
lungs, skin, not just joints. It’s a whole other beast eating away at your
body. I even have a rheumatoid nodule on my voice box that flares up. Cold
humid weather aggravates it, anything can really stir it up, and it causes
extreme fatigue, fevers, parts of your body are inflamed and hot, but the rest
of me freezes. Everybody that knows me knows I'm always cold. Eventually, if it
progresses fast, it will disfigure my hands and feet first, then elbow, maybe
knees. And it can and will eventually cause Osteoathritis, which will double
the pain. I can hardly wait.
You would think that my immune system would be quite busy at this point,
seeing as how it has my joints and kidneys to harass. But no, guess what
happened this fall? I began to have abdominal pain in September that progressively
got worse. I put it down to stress, of going back to work after 11 months off,
then having Dad diagnosed with cancer. Was treated early on for a GI bug,
seemed to improve, then got worse again. The only thing that seemed to help the
pain was being very still until it passed. It was always worst in the evening,
so I gave up eating later in the day. I
had some CT scans done, of which I could not have the IV contrast(darn
kidneys), but I could drink the oral contrast. Yum! It sat in my gut for who
knows how long, making me sick and getting a migraine. The part it wouldn't go
through(like it should have) was the last part of my small intestine, the
ileum. It was inflamed, and the opening very small. Initial diagnosis: Crohn's Disease. Oh yay,
another autoimmune disease was my first reaction. My doctor was more upset than
me. She referred me to a
gastroenterologist, where I have had almost the entire length of my digestive
tract examined, photographed and biopsied. Still waiting on the biopsy results,
but his "informal" diagnosis is Crohn's. Right now it seems to be
limited to the small intestine, no ulcers or holes, thank God. He also tested me for Celiac's Disease, which
is the gluten intolerance, but it just doesn't have the same ring to it as Kidneys,
Creaks, and Crohn's. :-) For now, I am
waiting on my next Dr appt. He gave me a list of meds he wants to use, 3
different ones, all scream DO NOT USE WITH KIDNEY DISEASE. I told him any meds I take have to be
approved by my kidney doc and myself before I will take them. Some meds I can
take, but the dosage has to adjusted a lot. Most drugs I can't take. I do want
to mention that surgery generally is not an option until the bad part of the
bowel is so bad it creates a blockage. It being an autoimmune disease and all,
will just come back and attack again. But I am seriously considering it, for
one, most people are diagnosed with Crohn's while in teens and 20's. I am 46
and if it doesn't get bad again for another 15 yrs then that has preserved my
kidneys for another 15 yrs. If it comes back right away, it would be useless.
So now I find myself actually looking up more info, alternative therapies,
diet control, surgery, anything I can get my hands on. I couldn't make myself
do it sooner, its hard to explain why, but when you're handed a diagnosis of
which you know there is no cure, no reversal, you kind of go through your
emotions almost like dealing with a death. There's denial, grief, depression,
anger, and then hopefully you get to a calm even keel. I think I am at the
anger part already, it seems soon, but I went through a year or longer of those
emotions with my kidney diagnosis. Maybe I am immune to it now, who knows? Now that's a joke, I am immune to everything
BUT myself. Had to insert a little medical
humor there. I am so glad that I do have a medical background, even if it was
in the animal world. I need to go back into a medical field, if at all
possible. I am going to go back to my
reading now, then go to bed. Tomorrow's a new day!!
Posts
