Category Archives: my life

thursday’s musings..

from my bed last night while i lay awake unable to sleep.

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As i lay here in bed, listening to the summer rainfall,
my stomach is nauseas and i feel an awful ache in my heart,
with a some anxiousness for good measure. 

**
Today was a very nice day. 
i felt well mentally and was in a good place. 
happy even and it felt so real and i knew it was. even if it was for just now. 
the peaceful happiness lasted the better part of my day. 

**
now here is is, hours later and i’m succumbed by the complete  opposite of how I felt today. 
feeling very sad and depressed. for no apparent reason. it just came on, as it usually does. 
why after such a day of hope?
because.
because my sadness, anxiety, fears and depression
are always there. they are a part of me and don’t go away.
just as the happiness, relaxation and peace i can feel. 
sometimes an hour of one and then an hour of two.
sometimes, minutes of each. it’s never the same and i can’t plan it.
i am however learning to with live both, one along side the other.
most importantly, i’m not pushing and or ignoring the fear, sad and anxious side.
obviously i don’t like feeling them, it’s totally crushing, but i’ve learned
that it’s worse to pretend they don’t exist and push them away. 
that’s when the severe depression and anxiety kick in and grab hold
and squeeze and i’m unable to breath.
that’s when thoughts of not wanting to be here start. that’s when i find i can’t fight my way out.
i now nurture both, the good and the bad. it’s not easy and is a daily if not hourly struggle.

**
so for now, as i lay here, trying to breath slow and and pay attention to what’s going presently,
i listen once more as rain continues to fall and the warmth of a sleeping dog beside me.

**

I write this not to get pity but to show that there are so many sides to having a mental illness such as severe depression and anxiety, especially 
when dealing with a chronic disease. however i’m learning that accepting that this is ok. this is what is happening and getting angry or upset ( i do get this also) all the time will only make things worse as stated above. i’m ok and for anyone who is dealing with similar things… you’re ok. 

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friday’s musings…

quite often its hard to put myself out there
even more so when i’m feeling unwell,
mentally and physically.
my first response is to hide.. to turn inward
a feeling of protectiveness  
that feels like bird wings 
folding over my chest
lowering my head inside it all
finding comfort there
which i desperately crave.
this is time i’ve come to realize
that I need to do the opposite
so here i am.. wings open
head held high, 
faking it till i make it.

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sunday…

Scars and bruises are slowly healing. They make up what I’ve gone through and how I’ve gone through it. They are battle wounds and many times I’ve thought about laying down and giving up due to being so fucking tired of the fight. However they remind me that while I’ll have these scars and probably more to follow, they are badges to what I’ve accomplished just by being here and not giving up. It’s a moment to moment process. As is this beautiful #morninglight that only graced my windows for a few minutes. Small gifts that add up. #dailyintention

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monday musings…

 

The need to say what is real rather then gloss over it was strong. Struggling with how much to share regarding being sick and what goes on is constant and with my writing and photography I want to be more forthcoming, open and even vulnerable which is pretty scary, enough so that at times it makes me feel like I’m going to throw up. I vacillate between keeping private and what I just said above. After 7 years I’m sick and tired of being sick and all that it entails therefore I would think everyone else would too. Its not for pity or attention, just the need to do it for myself and maybe even help someone else who is going through a similar situation. Ok.. pardon me while I go heave 🙂

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friday…

changes upon changes

trying to keep up with them

but losing ground

one step forward

two steps back

but persevere 

I must.

.

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my how time flies…

i can’t believe how long it’s been since i’ve last written on here.. almost one year (sigh)… makes me sad although i know i needed the time away
for a plethora of reasons.. health (mental and physical), wanting to spend less time online and more in the present and real world and feeling the need to keep to myself to deal with
all that’s been going on.

it’s strange to constantly have to rewire how to deal with the changing health issues. one way of handling things may have worked
before however no longer works. i’m always having to find new avenues of thought and working on myself to deal with depression and pain. i read a lot regarding how to
cope and i’ve learned some basic tools that for a while now have helped. can’t say how long it will last but i’ll take for now.

I do know that writing in my journal, taking photos daily even if it’s
with my iPhone, letting go of all else except the present moment. i’ve also allowed myself to have my days of feeling awful and i found that
instead of getting upset that i feel that way i try to have empathy instead of anger. this side too is a part of me and has to be acknowledged just as much as the positive and
ok times. doing this has actually reduced the time that these dark moments last.

it’s all a balance. it’s all a learning process and one that
is constantly changing.

yesterday morning we had our first frost and while it means winter is on it’s way i still find it quite beautiful and inspiring.

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Also posted in My words

to share or not to share…

i’ve been debating on whether or not to write about what i’ve been dealing with as of late in relation to having chronic gvhd. i may just write it down and decide after on if i should publish it.

in past posts i’ve mentioned that i’m taking high doses of prednisone since the beginning of may. with that comes a whole host of symptoms that are just horrid. the prednisone hasn’t been very effective in relieving the gvhd symptoms but they have to keep me on it. I’ll be starting a trial med this week to help with the chronic gvhd.

with the prednisone i have weight gain (mostly in my belly which they call “apple belly”,the med increases your appetite, a lot, actually causes hunger pains even after only a couple of hours after already eating,), irritability, difficulty sleeping, swelling of the face and neck (also called moon face, not pretty and very uncomfortable). as if all that wasn’t bad enough to cause me to be depressed, which it has, the med also CAUSES depression. how fucked up is that. basically i’ve been fighting to be positive, eating more healthy and trying to counteract all the issues from the side effects but it feels like an uphill battle. one i’m not sure i will win when my opponent is chemically induced.

yesterday i started a trial med to help with the gvhd. i inject a shot every day for 12 weeks, take a month off and then start up again indefinitely if I find it works well. after being on the trial med for 6 weeks they can start to lower my prednisone dose. once they start lowering some of the face swelling should go down. i hope. i’ve read that it usually takes a person going down to 10 mg before seeing a real difference. i’m on 40 mg.. so it may take a while.

meanwhile I will be traveling to boston quite often for the study.. good thing i like going back to my hometown.

while sitting at a coffee shop here in the south end i’ve obviously decided to publish what i wrote. letting all my insecurities go public may help me deal with them a little better.. at those who see me will now know why i look like an oompahloompah. 

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peonies …

it’s been a very rough and challenging week.
still is.
but i see these cut peonies
that i brought home from my last visit with hayley
which are now weeks old
and were only tight little buds when first picked
they are now opening up
layer by layer
as each petal unfolds, the peony grows stronger

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sunday’s moments…

it’s a sunday of simplicities
that’s how my life is rolling as of late
i did manage to clean up some autumn leaves
in one of the smaller, messier gardens,
did this in the early morning hours
15 minutes of light work
followed by
hours of feeling exhausted and dizzy
my stamina sucks

therefore this day has been made up of
spending most of my time on the porch
being kept company by cats and dogs
i took a nap, finished a book, did some writing,
starting a knitting project.
made homemade pizza for dinner
and egg scramble for breakfast.
waiting for the relief of t-storms

although I’m moving at a snail’s pace
i’m finding this isn’t necessarily a bad thing
i’m living in the moment.
truly.
maybe i needed to be reminded of this
as my day draws to a close
i think i’m ok with that.

here are some of those moments

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_DSC7825 _DSC7830 _DSC7826 _DSC7828 photo-3

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her..

I had to go to Boston this week for appointments and more meds due to having chronic GVHD.. not much fun but at least I got to have a nice
visit with my lovely daughter.. wasn’t able to take many photos due to time contraints but I did manage to snap this one off..

the look

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