Living With Limitations (page 2)

MsMcDucket

I got my first Psoriasis outbreak after taking Gabapentin. I thought it was the funkiest rash that I had never seen! Dr says stop taking it. I did. The rash didn't go away...

R.Crusoe

The Egyptians used to say at the end of your life your heart must balance against a feather! I think it may be a measuer of whether it has off loaded all hatred? Maybe everything?

Here is a poem I wrote:

Heart weighed
with feather :
Good
Or malice?

I lost all the demons
I dropped all the fear
I held out my heart
To all I hold dear

I changed my religion
I tried all I knew
I suffered my hang ups
Everlasting in queue

I needed an ear
I needed a voice
I offered my all
But was given no choice

I shut myself up
I held in the shouts
I gave up the things
All my life had worked out

I burst in my soul
I offered it up
I let others see
The insides of my cup

It emptied, ran dry
I had nought left to give
'Cept the loyal old me
Not even wanting to live

And knowing my form
None saw my worth
From all those I'd known
From mine and their birth

And those whom I loved
That depended on me
Whose souls I well knew
Were washed out to sea

Were taking advice
And hurting till spent
I hated the pain
Years without relent

Their lives were all change
My goodwill kept out
Trampled and cut
To prove I wanted out

The lies and the cunning
undermining my love
and the truth of my spirit
drumming and drumming

In my own eyes
cries filled with cries
I, with so much to give
Traded for destroyed lives

A prisoner to ideals
Of how all should be
Unless I should die
I'm in slavery

Seeing me as a soul
Dying, side of the road
They shout,'Pick up your bed.
And walk on your own!'

I'm sure many of you have felt similar things and far more during life!

momzcrazy

RC, I knew you were a poet! Your posts reflect it. Thanks for sharing that.

momz

choosing life

I am on a cocktail of drugs too, but not a whole lot of help there. I guess they keep me from deciding to go to sleep and not wake up, although I must admit it is tempting at times.

I've tried Embrel, on Humira now. No help there yet. Looking into possible chemo for a while. A last resort, but useful for some with R.A.

I know what you mean about sheer exhaustion too. Sometimes, it feels like my body just doesn't make energy anymore. Rest doesn't seem to replenish any energy either.

I took care of a lot of people with chronic diseases, but I never really knew what it was like to endure them. It did make me be still and miss meetings which started me down the long road of thinking about life and leaving the jws. No longer could believe in the fairy tale and I found their answer for suffering so unsatisfying.

Trying to think of something good that has come out of all of this.

Lady Lee

Just a note

Dealing with medications even if they are otc meds like ibuprophen needs to be carefully watched especially if you are using them in conjunction with other meds.

Before I started the gabapentin I was using ibuprophen for the arthtitis pain along with the other meds. But I can't use it anymore.

To find out the maximum dosages of medications I check the MayoClinic at http://www.mayoclinic.com/. I know I can trust the info they put out.

Any long term use of a medication must be reported to your doctor. Too often there are long term side effects that need to be monitored. I regularly see my doctor who does frequent blood tests to make sure we aren't doing damage to some of the other parts of myh body - like I need more problems

Right now I am at the max for the Tylenol and the amitriptyline but I have a lot of room for increases in the gabapentin if I need it.

I report everything to my dr and if I have to see someone else they have the list as well.

Just be aware that even those otc drugs can cause problems if used for too long or at higher dosages than recommended

Lady Lee

JWdaughter

Sometimes, I have had to accept the help of strangers-and boy, that is a pride killer!

Something I have discovered about asking for help - people are a lot nicer than the JWs taught us they were. Over the last 4 years I have had only 2 negative experiences. People in stores will see me looking for something and offer. But there are times I sit and wait for some unsuspecting person to come along. lol

constant pain is exhausting I know if I overdo it one day I will pay for it for the next couple of days. If I miss one dosage of meds - I pay for it later. ooops I just missed one

I need to stay on top of it all the time or it drags me down.

dinah

Its just something you kinda get used to.

My enire back is fused, the hardest part for me is not earning a paycheck. Yes, I've worked since I was 15 and had FICA tax taken out of every single check but still.........sometimes I feel useless.

Mostly it's frustrating.

free2think

l like dinah said, it is something you get used to.

Mostly it's frustrating.

Yep it is very at times. i guess because i've have the hydrocephalus caused by another rare condition since i was born i kinda got used to the headaches and all the other symptoms, and then when i found out about the chronic fatigue syndrone and pituatry tumours i was used to what life had to throw at me. Nowadays i try to make sure im up to date with regard to research on my conditions and take it day by day. It's hard and frustrating at times and extremely painful but i try to forget all about that and just enjot the good times. From my research it seems it will get worse with time but not a lot is known about my condition as it is rare.

From what i've read the people with my illness are supposed to be below average intelligence, and as it affects the cerebellum, (i have a cyst there instead lol), makes co-ordination difficult, (apparently i wasn't supposed to walk) so i dont pay as much head as i should to what they say. All i know is that my life span is suuppsoed to be significantly shortened so i'm trying to enjoy each day as it comes. Yes there is constant pain, i've now been told i have a very complicated migraine, but then i try to think how bad it could be and that helps. It also helps not being a dub anymore lol.

R.Crusoe

There was a woman lived near me who had her back fused since young - I fancied her for years but never even spoke! What a gorgeous female gift to Earth she was!!!!!!!!

Tired of the Hypocrisy

don't delude yourself. Some disabilities are able to be dealt with and overcome to a degree to say the least, however some are not. So, go into any situation knowing there is a problem, but you are going to go after it anyway. I live my life sick. I worked myself to death in physically demanding jobs and it got me nowhere. My body is broke-down and because I believed the washtowel's lies about college I have no savings nor a career to depend on. Now as sick as I am I am wrapping up a degree in Information Technology and will be able to get a job indoors where I don't have to climb poles to earn a buck.

Take some aptitude tests and see where your gifts lie. Then set some goals that you can attain. Find a way to reach those goals and stick with it. Us disabled people may be down but we are not out! Go for it!

Living With Limitations

Share this