If you've been following my blog, you may remember a few years ago I had a retinal occlusion in my left eye that was hemorraging. I got shots in that eye and to this day still feel reminiscent that I was somehow auditioning to be a victim on the show "Criminal Minds".
I stress with each check up I'll once again hear "you need another shot". Today was another reprieve, however the EpiRetinal membrane has gotten a little bigger. These membranes eventually cover the retina and vision is distorted, blurred, and eventually lost. Surgery can remove the membrane, but my specialist feels I wouldn't have a "marked" improvement. So I chose to wait until it would be a marked improvement in my vision.
Yesterdays CT Scan showed my thyroid has gotten larger, and is pressing on my trachea. This could also be another reason for my coughing until I choke. More 5o come on that as I know.
You may be thinking "what else?" Believe me, I've asked myself that before too.
When I say my health care is a full time job, I mean it !
BUT. .. I am still here. I am still fighting. I still have alot to give.
I knew 24 years ago, and still agreed to be listed for that transplant. The overwhelming thoughts of a life off oxygen, no wheelchair, and the ability to breathe make this journey more than worth it.
Remember to always be thankful for what you have- good, bad, or otherwise for the alternative for me was to not be here at all to experience this life.
Grab life with both hands, stand strong and hold on tight. It's gonna be one helluva great ride !
Tuesday, January 14, 2014
Saturday, January 11, 2014
Wishes And Blessings
How many times have we all wished for something ordinary.
"I wish the dishes were done before I get home. " Or "I wish for a bit of quiet" . Now, remember how great it was, when it actually happened ? The utter bliss if sinking into that steamy bubble bath, your favorite music and no one home to interrupt.
That is me this morning.
As many of you know, my cough keeps me awake both day and night so naps are rarely achieved with rest. Couple that with 4 pillows in a vain effort to NOT cough, and deep, refreshing sleep is elusive. Having a desire to sleep on your back is One thing, being forced to is another. Attempting to sleep sitting straight up one invariably awakens with the malady "tingly butt".
Among my simple wishes , topping the list are:
1. A refreshing nights sleep with no cough.
2. The utter bliss of sleeping with one pillow.
I have many simple wishes, but sleep has to top the list. Sleep refreshes us in mind, body and spirit.
Last night for the first time in a few years, my 2 simple wishes came true! Three pillows on the floor and my head on only one. And *insert drum roll* no cough ! I know it will rear its ugly self after I drink my coffee, but I intend to wallow in my good fortune for as long as possible. Oh! And I forgot the best part! I got up at 5AM, went back to bed and unbelievably went back to sleep until 7A.M. this is amazing in my life.
I know this burst of energy will dissipate as the morning moves on, but it's so nice to wake up feeling rested and ready to tackle the world. Finally... :-)
Have a refreshed day and don't take your simple pleasures for granted. ♥
"I wish the dishes were done before I get home. " Or "I wish for a bit of quiet" . Now, remember how great it was, when it actually happened ? The utter bliss if sinking into that steamy bubble bath, your favorite music and no one home to interrupt.
That is me this morning.
As many of you know, my cough keeps me awake both day and night so naps are rarely achieved with rest. Couple that with 4 pillows in a vain effort to NOT cough, and deep, refreshing sleep is elusive. Having a desire to sleep on your back is One thing, being forced to is another. Attempting to sleep sitting straight up one invariably awakens with the malady "tingly butt".
Among my simple wishes , topping the list are:
1. A refreshing nights sleep with no cough.
2. The utter bliss of sleeping with one pillow.
I have many simple wishes, but sleep has to top the list. Sleep refreshes us in mind, body and spirit.
Last night for the first time in a few years, my 2 simple wishes came true! Three pillows on the floor and my head on only one. And *insert drum roll* no cough ! I know it will rear its ugly self after I drink my coffee, but I intend to wallow in my good fortune for as long as possible. Oh! And I forgot the best part! I got up at 5AM, went back to bed and unbelievably went back to sleep until 7A.M. this is amazing in my life.
I know this burst of energy will dissipate as the morning moves on, but it's so nice to wake up feeling rested and ready to tackle the world. Finally... :-)
Have a refreshed day and don't take your simple pleasures for granted. ♥
Saturday, January 4, 2014
Decisions
After receiving disheartening news in December, I posted the news on Facebook.
It seemed ironic that I normally go to my clinic visits feeling uncertain, only to hear how well I'm doing. This time I was feeling great, and got a less than favorable prognosis.
Lung transplant dropped the chronic rejection bomb, while I discovered my paperwork also showed stage 2 kidney disease from kidney transplant.
After posting my thoughts on FB, I got many responses. Most encouraging my determination to do this on my terms.
However, I think one read it incorrectly. tge response was "I've been in stage 3 for years". Replying about a lung transplant
It was stage 2 kidney disease, scary in itself being a kidney recipient.
However a first time lung transplant has the possibility of being relisted. Me, having had 2 already my chance is next to nil for another.
I'm not being nit picky, merely to set the record straight. I remember my years of chronic rejection, and the fast downward spiral. I have no wish to go there again, though I knew it would one day happen I don't miss the nose wedgies and bloody noses from oxygen. My wheelchair has been in solitary confinement gathering dust .I have no desire to grant it visitation rights to my derrière.
Mostly, I do not miss the shortness of breath when talking. Being forced to decide between eating and breathing.
Or the realization that my life is slipping away. It is pure hell having an active mind in a daily weakening body.
Which is why I posted my life on my terms.
I am slowly rebuilding my endurance, no small feat with a negative reserve of energy. Let alone the breath.
I'm walking more and have taken to my bicycle in the hope of keeping my wheelchair in solitary confinement.
It seemed ironic that I normally go to my clinic visits feeling uncertain, only to hear how well I'm doing. This time I was feeling great, and got a less than favorable prognosis.
Lung transplant dropped the chronic rejection bomb, while I discovered my paperwork also showed stage 2 kidney disease from kidney transplant.
After posting my thoughts on FB, I got many responses. Most encouraging my determination to do this on my terms.
However, I think one read it incorrectly. tge response was "I've been in stage 3 for years". Replying about a lung transplant
It was stage 2 kidney disease, scary in itself being a kidney recipient.
However a first time lung transplant has the possibility of being relisted. Me, having had 2 already my chance is next to nil for another.
I'm not being nit picky, merely to set the record straight. I remember my years of chronic rejection, and the fast downward spiral. I have no wish to go there again, though I knew it would one day happen I don't miss the nose wedgies and bloody noses from oxygen. My wheelchair has been in solitary confinement gathering dust .I have no desire to grant it visitation rights to my derrière.
Mostly, I do not miss the shortness of breath when talking. Being forced to decide between eating and breathing.
Or the realization that my life is slipping away. It is pure hell having an active mind in a daily weakening body.
Which is why I posted my life on my terms.
I am slowly rebuilding my endurance, no small feat with a negative reserve of energy. Let alone the breath.
I'm walking more and have taken to my bicycle in the hope of keeping my wheelchair in solitary confinement.
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