I havnt posted in forever
But I cant get my head straight so thought it might be worth a try.
for so long, I spent all my time hating myself.
I tried to hard to die.
Then I decided to give living a chance
and I loved it.
There is so much to live for, so much to see and do and learn.
I have so many goals.
But, I am sick and I am running out of options.
For the past 3 years, I have been having surgery every month.
I am only in hospital for 3 days but it takes about 2 weeks to recover.
every 8 months or so I go for a big surgery, that leaves me in ICU followed by a month in hospital.
It is to help me breathe, but the surgery is getting less and less effective.
My body is putting its foot down now, so there will be no more big surgeries.
This is as good as it gets.
I can barley make it up a flight of stairs right now, never mind explore the world.
There are no other options.
I dont know how things will progress from here.
I hope something changes, but I have hoped that for far to long.
I dont know what to say or do from here on.
I always depend on hope and silver lining, but right now, I seem to have lost that.
I am empty.
And I have a feeling this is going to hit me hard soon.
I know the surgeries have been hard on uou but at the same time your hope.
Has the doctor mentioned any other options than Big surgeries?
One thing I will say is this doesn't have to stop you exploring the world it just needs to be done in a different way.
My cousin is wheel chair bound due to cereberal palsy. He has an amazing life and it does not stop him exploring the world at all. He has a job and goes on holiday and to him life is wonderful.
I know your situation is different but would having a wheelchair or one of those little scooter things help? Don't think of them as a step back but an aid to help you move forward and do the things you want to.
Will the small operations keep you on an even keel? As in, stop things getting worse?
No other options mentioned. TBH, he dosnt talk to me very much.
The small ops are still available, but the more of them I have, the less effective they become and the longer the recovery time.
I do have things such as a wheelchair, but there use is limited.
After a small op, I can breathe, for maybe a day or two, then I begin to decline. right now, I am being reviewed every 2 weeks. Longer than that, and I begin to experience side effects of lack of oxygen.
If this is as good as it gets, then I think it is perhaps time to review how aggresivley the treatment will remain and perhaps start looking at comfort measures only. I dont want to prolong the envitable, nor make anyone else suffer unesscariliy.
This makes me so so sad and I don't really know what to say other than I wish I could give you some of my trachea!
You know where I am and how to find me xox
When we lose twenty pounds... we may be losing the twenty best pounds we have! We may be losing the pounds that contain our genius, our humanity, our love and honesty. ~Woody Allen
Is a chocolate muffin loving glitter ball
Kim, I don't have many words but I wanted to let you know that I am thinking about you and if you ever need someone to listen I am always here. I wish I could make everything better <3
I don't know what to say except that it makes me sad to read your posts.
So I'll just leave lots of cuddles and good energy and stuff you like for your.
*hugs*
You survived the abuse.
You're gonna survive the recovery.
:( Oh kimbalum, maybe try talk to your doctor. If you tell him the bit you've put at the end of your post he may realise how worried you've become. Often doctors have a lot more in their heads than they say and it might make him realise he needs to tell you if he has other ideas.
It seems wrong that in this day and age there isnt another option for you.
The options are narrow. There are expiremental options, but to get accepted for such, would involve a lot of money, that I dont have, just to be assessed. Even upon acceptance, the risk would be huge, it would be approx a 30% chance of getting through it. Imagine raising all that money, only to not make it. It would not be fair on a lot of people.
The other option, that I know will be suggested, would be a trach again. But this would not be a long term option for me. The last one, my breathing got worse over time, I was in and out of hospital so much not to mention, pain and discomfit. But more so, I would have no voice with it. It would be my only airway. The only thing I can think of more scary than dying, would be dying with no voice. No way to say good bye, or tell people when you are sad. No way to talk things through. It would also be a no way of going back type of thing. It would also be a no way back situation. Once it is in, it would have to stay.
At the minute, I am doing surgery every 2 weeks and so I am going to demand to see my surgeon next week.
When we lose twenty pounds... we may be losing the twenty best pounds we have! We may be losing the pounds that contain our genius, our humanity, our love and honesty. ~Woody Allen
Is a chocolate muffin loving glitter ball
Its days like today, when I begin to feel that perhaps, this is all in my head. Today, there has been no challenges, no frustrations, done all that I have wanted to do.
But then, my mind casts back to what I have done to get to this place. I have not left the house for 2 days, slept an average of 16 hours a day and done nothing. the reason there has been no frustration, is because I have given up doing things. The most challenging thing I have done, is climbed a flight of stairs. At 25, there should be more to my life.
But, it is also in days like today, where I feel the greatest hope. If I have managed today, then I can manage tomorrow and that thought carries me through to the next day after.
something in my mind keeps shouting, there has to be more. I have to have missed something. There is an easy solution, that I am just not seeing. Visions run through my head, of speaking to my surgeon, of him laughing and saying dont be silly, there are tons of options. or here take this pill three times a day and you will be cured by next tuesday.
There has to be something that I am not seeing. There has to be. There has got to be more to it. There has to be a purpose, a point to the whole thing. Like a great revelation. Some big conclusion, that makes you go, ah i see.
I cant have fought all this for nothing. I have had 9 years that I shouldnt have had and for that, I am so so grateful. I have done and seen so much and met some wonderful people. I have grown in ways I never knew possible and learnt so much. But that is the bitter sweet part, doing all that, I want more, I want to keep doing it. There has to be more options. There is something that i am not seeing.
Sometimes time, goes so fast, it moves in a blur and sometimes, so slow that, minutes feel like hours. I need time to go now, I need to speak to my docs and find out where i am at. I need answers.
I don't have any words that will make this go away, or better. Just know that I care, and am reading and am sad to see this.
If it is a money thing that is needed, say the words and I can almost guarantee that people on here will send it if they can, me included - Especially if it will help.
and you have not fought all this for nothing. Not at all. In those nine years you have helped countless people on here - me included. I know that in the heat of things that may seem very little indeed, compared to travelling the world, but separated into its component parts, it means a lot and I wanted to remind you of that.
Roiben x
If the Human brain were so simple that we could understand it, we would be so simple that we wouldn't.
my body needs a break from treatment.
Each treatment gets harder, longer, more painful.
The surgeon agrees that I am running low on options at this point.
Its kinda catch 22.
If i were at the point of life or death, they could have a go at a more radical option in hopes of curing me.
But, I am not at the point, they can put in a tube, that will serverally limit my life. Not only that, the tube, for me is risky. Chances are it will make very sick and could in the long run still kill me. If i reached that point, the more radical surgery would not be an option.
So, I have to go for the tube, with the promise that my surgeon is going to make sure I get to keep my voice.
Once in, chances are that the tube will never be able to come out again.
And no one really knows what then.
Its going to be a long and hard few months.
Hope for the best, but prepare for the worst.
“The good things don’t always soften the bad, but vice-versa, the bad things don’t necessarily spoil the good things and make them unimportant.”
“Nobody important? Blimey, that’s amazing. Do you know, in nine hundred years of time and space I’ve never met anyone who wasn’t important before.”
“If it’s time to go, remember what you’re leaving. Remember the best. My friends have always been the best of me.”
