Archive for February, 2011

The Wandering Years – In search of my disease….

2008- Present

For so long it seems I have sought out the answers to my ailments that when the arrival of a diagnosis came it was as if the plane had finally landed – I had arrived at some far oft destination I sorta knew I was headed to but at the same time it wasn’t the place I thought I would land.

I had walked along my path with so many symptoms that were overlooked – so many doctors who didn’t really care – so many friends I left behind in sadness I feel due to the madness my life was from 2008 to present – maybe sooner – as well as the help from my bff who stood by me and tried to help me best she could but the grounds were shaky due to the meds I was told but in the present I am reminiscent of that person to her again without that med so it wasn’t the med it was me being me. Me living with a lot of things going on and when that happens I tend to batten down the hatches and try to weather out the storm. This time it’s a different storm blowing through but I’ll get to that shortly.

In 2008 I had one of what I would remember as my worst flare-ups that I have had to this point – this was the beginning of a long road that would always seem to go onward without a crossroads or even a bend in its way. My symptoms so you understand were extreme joint and muscle pain, I was anemic and my blood work showed I was RA (the usual False positive bs) – my ANA’s (another positive but to take the test one step further a negative would show so it wasn’t lupus) -

Let me stop to tell you that there are more than one test you can do to see if Lupus is present and thank God my new doc did these tests instead of stopping like all the others did – she’s an angel to me for her perseverance and her expertise not to mention SHE CARES ABOUT HER PATIENTS.

I was always low low low on vitamin d – b foliate was always amiss – sugar always tested high – many factors in my blood work over the course of almost 3 years pointed to something but no one took the proverbial shovel and dug deeper. Instead in the wake of this horrifying attack in 2008 I was diagnosed with Fibromyalgia – if you’ve been reading along you will know that I think this is just to an easy of a scapegoat for docs these days but I think too sometimes it’s true you do have Fibro but it’s not your disease its you’re symptom of a disease that so many accept because they hand you these pretty pills called Lyrica and wow – for the first two weeks you think my gracious I’ve been given a cure; until they stop working – until your vision fails you – until you can’t walk a straight line because you balance is off and people think you’re high as a kite because you talk like you are and I could go on but again I promise you there will be a special entry on Lyrica that will I pray save someone’s life. At first they start you out on a low dose and they work you up to some unimaginable doses for any human – I’m talking like 300 mgs 2 times a day or more? — Imagine a drug they need to start u at 75mgs twice a day and within weeks you’re taking 600mgs or more a day and maybe they added Savella or even narcotics all this to stop the pain – the pain that doesn’t go away only leaves you addicted to a handful of drugs – a horrible life of not being fully functional as you used to be to the point you have to ask for help with some of the simplest tasks like cleaning your house or someone taking you here yonder and there because you’re afraid to drive.  This became my life – I was not only dependent on drugs to get through every day I became dependent upon my bff for more than I wish I ever would have had to because I am Kristy dammit – I used to be a whole person – I didn’t need help with these things and it pisses me off now looking back but I’m thankful I had her at the same time.
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IN beginning my journal entries of my life “living” with Lupus I must first I suppose give you some background as to how I finally after over half of my life searching received what I felt like was the best gift God had given me in such a very long time. The road was so very long and most of the time I didn’t even know I was walking along it.

WHEN I was 14 years old I began having joint pains that would literally put me in bed because sleeping was the only way you could forget the pain. My mother was a very good mother and she took me to several doctors trying to find answers only to hear that “it’s growing pains or she has arthritis from playing softball”. Looking back telling a parent your child has arthritis should not have been something doctors looked upon lightly but keep in mind too I’m now 41 years old and not as much is known about Lupus as it is today and I’m sure doctors weren’t as astute in following through with a kid complaining about her knees hurting as they may be today. Although Rheumatoid Arthritis was known about so you would have at least thought they would have checked for that.

BY time I was 17-18 the joint and bone pain had moved further along so from my knees to my ankles hurt a great deal. Again I went to the doctors to hear the same things – no blood tests ever taken or further investigation. At 18 my first daughter was born and after her birth I began to feel the pain from my lower back down – again this pain so unbearable 4 motrin and bed was all that would take it away.

MEANWHILE incidentally without knowing anything about Lupus or any other diseases at this point other than the major ones everyone knows about – I look back now and remember how sensitive to light I was – how I couldn’t like normal people go outside even on an overcast day without sunglasses and if I went to the beach I would always burn very easily – I had suffered sun poisoning and “sun rashes” anytime I spent too much time playing in the sun but hey we’re kids – we play and play I did though I didn’t know I was playing with a literal fire beyond the usual UV rays that back in that time didn’t seem to be as stringent on the body as they are nowadays.

BY the age of 23 I had my second child – but in between having him and my first,  I had a two miscarriages. You think to yourself that this happens to a lot of women and it does but when you put together all these many pieces of a puzzle later across time you learn a lot of these things tend to be related – related to Lupus. I suffered a very tiring and hurtful pregnancy because of the bone and joint pain I had from my lower back down and I have also been a “napper” so those increased as well too. Being tired a lot is one of Lupus’s favorite ways of letting you know it controls you – you don’t control it. I still to this day have what I call “Crash and Burn days”. Those are days where my body shuts down and I can sleep anywhere from 18-48 hours off and on with little waking hours here and there…ie get up to make sure you feed your kids or take your pain pills and other meds I have to take from some other medical issues I have and will share with you as we come upon them.

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It feels good to breathe….

once upon a time
when i knew who i was
i would go through my days
writing things
that for the most part
only i understood -
now i write seldomly
but when i do
it means something
is more amiss than fit -

stalked by voices
of times gone by
i hear new meaning to the words -
an understanding i’m not liking -
a person who isn’t as clear
in the light of day
as they are
from the darkness of night.

i should be lonesome
without a partner in my life
but instead
i am happy for once;
it feels so good
to feel that freedom
i’ve searched for all my life -
the freedom to be myself
without the need
of someone there
to comfort my gray skies

it was a long journey,
it took me most of my life
to get here -
my dreams are coming true
on so many levels
but they do so on my own accord -
no one can take away
the truths of my work -
not yet done here
but still it’s all the same
but different in so many ways

one wonders if this
is an okay feeling to have -
they question your reality
of how you see things
that belong to you
in a conquering way
that took so long to get here -
here to this place of love
for ones self and ones own being -
i breathe in a breath
of strange air

i’m in love with love,
peace and happiness for all -
i’m in love with myself
because if i can’t love me
who could ever love me
the way i want to be
loved and love back -
this is a trek through
the soul’s depths
of what it is instinctively
taught across the years

being alone
isn’t a death sentence -
its time given to learn
to love who you are -
a time given to you by a higher power
to show you who you can be
if you follow your heart of dreams -
dance on waters
that never cease to recede
to and from
the ebb and flow of life

once upon a time
i feared being alone -
i feared not having someone
to hold me close
now i hold myself in tears knowing
I finally made peace
with an age old demon
who chased me through hell -
now i stand free in a field of dreams
mine for the taking
if i reach down
inside my self and take it.

i’m in love with love,
peace and happiness for all -
i’m in love with me -
the me I’ve grown into
over the rapids of a river
out of control
now eased into an easy to and fro
over the currents of life
where only you can go alone -
it’s not as bad as it seems;

it’s sometimes lonesome
but in truth that was the flower
you picked
from the field of dreams that day -
you let it go
looking for another flower -
he loves me – he loves me not -
its not of importance
because i love me
not egotistically
but spiritually
and damn it feels good
so good to breathe.

©Kristy Tallman – Feb 6, 2011 All Rights Reserved