Stuck in Hibernation Because Stress and Lupus Controllled My Treatment Negatively

Starting Over Again On Prednisone…

Stress Overuled It’s Intended Course of Action Don’t Let This Happen To You

It’s been quite sometime since I posted anything regarding my treatment my new-found disease Lupus and it is with good reason that I haven’t. Last I wrote I had sat down on the side of my road and watched as others who have Lupus carried down that road with their heads held high and their hearts filled with the positivity I had vowed to take this disease on with. That hasn’t changed but a lot has changed as I began my treatment of a 40mg Prednisone taper that well I think its been a good month and a half of and were I where I should be Monday I would of dropped to 5mgs and been almost done with the taper. It is this that I want to write about and share with you but know I’m sharing with you something that is not the norm for most folks but it’s a lesson learned and one I feel needs sharing for those of you who are on prednisone to treat your flare ups or to start you new journey to a better way of living flare free as possible.

When I started at 40mgs it was a wild ride through the psyche – you’re on the verge of your own skin ready to jump at any point because everything you feel, have felt or didn’t realize was as serious to your body becomes very real. It rises to the surface like oil would rise on water and in doing so you tend to be more outspoken, more on edge and more adamant about the things you want or don’t want to deal with. We all have things in our lives that stress us – to think that you can remove all your stress is like believing you will hit the lotto tomorrow and your Lupus will magically go away as quickly as you were told you have it. One thing that is the most important thing to remember about Lupus is that you have three culprits that are most detrimental to your life and longevity of your life. Those three things are Stress, Illness and Sun – your little outlaws’ catalyst that keeps it thriving and driving its way through your body at warp speeds and once its on a rampage that’s when you will be given a treatment of prednisone. Dependent upon where you are in your disease, how long you’ve had it, how long you’ve known you had it and your relationship with your doctor are the key factors in what will be decided upon as far as how many milligrams of this med you will start at. I had never been treated for my Lupus so this was the first step in my doctor and myself to discover how to start our course of action – first we do the prednisone which was a high dose due to fact there was a lot going on inside this body of mine and it needed a strong kick in the ass. After I went through this which as I would be going through it the medicine would be eliminating the inflammation and taming the flares or putting them to sleep – after two weeks I would begin the Plaquenil 100mgs 2 times a day – this is a drug that if you can take is a wonder drug for Lupus patients as my previous entries has spoke of.  I unfortunately couldn’t tolerate the drug – I don’t handle drugs that have sulfur or sulfate in them and I was horribly nauseated for the entirety of time I was on it. We tried to cut the amount of the dose in half however due to my body not liking this drug the nausea wouldn’t go away; however, within 24 hours of stopping the medicine the nausea left as if it had never been there. Now trust me when I tell you I wanted very badly for this drug to work but this was not your normal nausea and this is a drug I would of been on for the rest of my life. This is one of the best drugs in regards to treating Lupus due to the minimal serious side effects and the fact that its not an auto-immune suppressant drug type. When I speak of serious side effects what I refer to is how the body processes this drug, ie…it doesn’t threaten your organs as much as the other drugs do – the worst case scenario is that it can cause damage to your vision with long term use that is irreversible.  Losing your eye or losing your kidneys/liver – you see my meaning?

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I just need to rest - just rest for a spell.....

Sitting on the side of the road…a bad day w/Lupus

….I just need to rest – rest for awhile then I’ll get up and go on…..

To dare think that stress my worst enemy would stay quiet in my life is an inexcusable mistake on my part for believing in such falsities – life is stress and stress is life but right now I’m being eaten alive – I’ve fallen from that great high road of hope as my new med that was suppose to be so successful I can’t take – back to the doctor I go but two fold now I’ve caught a cold or virus because my system is down and fighting – the irony of Prednisone is you think great I’m safe now – sadly you’re not it’s off working on your “outlaw” so it doesn’t see the new one come into town – the man with a gun strapped to his waist his draw much quicker than your own – I caught my daughters sore throat/cold/virus?? Who knows I’m sick now on top of the sickness I felt in taking a med that didn’t agree with me and all I wanted was some time alone – time alone that I couldn’t have afforded me.

My family has been so great to me – their support and love is beyond anything that I ever thought would be because they seen their daughter, sister, mother taking a positive outlook on this disease that so desperately needs to stay alive in me. Things are falling apart though and it’s getting to me to the point that I lost my own sense of sanity in the midst of the mindset that was overbearing and uncontrollable no matter how many times I ask – Please leave me alone.

I wasn’t being mean – I wasn’t being evil or vindictive or slighting of another yet I was fighting a battle against a torent wind that wouldn’t rest – wouldn’t let me have a moments peace – demanding me – telling me what to do and not once considering what it was doing to me had such power to say I was causing them stress because I didn’t jump when I was told to – I didn’t say what was wanted to be heard and I was doing so because had I of did that I know my words would come from a very cold place of hurt and pain – a place I didn’t want to go – not now – now in this time when things are happening in my life like snowballs out of control. In my family alone we are facing so many things but we are facing them together – we are trying to get through doctor apppointments after doctor appointments for more than just me and I was doing so good holding on to those in my family who needed me and now today I let them down because I’ve shut down – not because I chose to – not because I wanted to because my body couldn’t take it anymore.
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My Sky is Falling

Stay positive – stay high – stay alive!
Stay positive – stay high – stay alive!
I scream – I scream – I scream
No one hears me – no one cares
No one knows how to decipher the silence
Only me – only me – so alone in my feelings

Stay positive – I fall – I cry
I was doing so good – so good
I smiled in spite of my disease
I was ready to face the music
Dance on the high road – win…
but then…

Stay high – the drugs make you sick
They bring u down – it’s okay I’ll be okay
I thought….
I’m not because outsiders won’t let me
They won’t stop – they won’t stop

Stay Alive – how – why?
My sanity is tested beyond reason
for someone who is normal
Stress engulfs the positivity of life
The smile fades to tears
I can’t do this – I heard myself say??

I can’t do this anymore – What?
Why? Can’t anyone hear me -
Why won’t the voices stop -
Why can’t you let me be??
I want to say ALIVE

CAN’T YOU HEAR ME??

Stay positive – stay high – stay alive!
Is that so much to ask
A day – an hour – a minute without wrath?
I feel like shit – the meds aren’t right -
I caught a cold over night

Systems on a down – I’m fighting
Fighting for the right
To Stay Positive – stay high – stay alive
Catalyst will come and go
They aren’t suppose to pound down your defenses

LET ME GO!!

Tears wash away what good was there
My fears try to creep in and take over
stress my worse enemy it’s so well known
BUT YOU CAN’T HEAR ME…WHY???
please…
spoken too softly….Leave me alone

Please let me find my way back
To stay positive – to stay high – to stay alive
Don’t be the catalyst that creates
Storms of stress from hell -
System’s on a down

My sky is falling….
My light is fading….
Light the bounces of heartbeats
Beep beep – beep beep – beep …
Flat——-lined now

Now you can’t hear me
No one can..
Not even I can discern quietude
in the death of stress’s grip
My sky fell……