My Ramblings...

[nicola1723]

I'm so sorry you have to endure this. I wish I could say or do something to help.
On a totally selfish note, your post has been a reality check to me - I have become obsessed with the scales - beating myself up if I gain a half pound. I need to ditch them and enjoy life! Xxx

 

[Kar8858]

Hells bells Alex you are having a right journey!! Keep at it..and take care x

 

[femfrankie]

So sorry to hear that there has not been much improvement for you Alex ((((((hugs))))))) a million xx

 

[ThinnerJemima]

Alex. Get healthy. Get a JEG. Then try to make sense of things and try to eat.

 

[A.Positive]

I spoke to Amy the Dietician this morning and to be honest she didn't say anything "spectacular". I suppose I was hoping she would. I ate a bit of bagel, chewed to within an inch of its life today and passed out for 2 hours. Haha! You have to laugh. At the time is was very scary but since waking I feel slightly drunk and that is actually a Godsend!

She wants to see me on Monday but I have said I don't really see the point unless she can suggest or do something other than weigh me or talk some more. I wasn't rude, don't worry. I can't abide rudeness.

The ball is in my court gang and right now, I'm playing the Alex Game. I'm going to nip to my GP this afternoon and get some bloods taken. Let's see what they say.

Thank you everyone for your words and input. Jem, I am so jealous! A Caribbean cruise is just what I need right now. Some sun on my bones!

 

[A.Positive]

Oh Chrisa, I forgot to say that both Emma and your daughter look beautiful! Xx

 

[Debs!]

Alex, I am very new and just came across this thread somehow but I just had to acknowledge how memorable and impactive your writing style is - tackling a very hard topic in such a candid and brave way. I know nothing, I am pre op and I can't imagine what your are going through but I had to write and say good luck and I truly hope your gentle path to wellness can soon be found - you sound like one hell of a lady - best wishes

 

[femfrankie]

I spoke to Amy the Dietician this morning and to be honest she didn't say anything "spectacular". I suppose I was hoping she would. I ate a bit of bagel, chewed to within an inch of its life today and passed out for 2 hours. Haha! You have to laugh. At the time is was very scary but since waking I feel slightly drunk and that is actually a Godsend!

She wants to see me on Monday but I have said I don't really see the point unless she can suggest or do something other than weigh me or talk some more. I wasn't rude, don't worry. I can't abide rudeness.

The ball is in my court gang and right now, I'm playing the Alex Game. I'm going to nip to my GP this afternoon and get some bloods taken. Let's see what they say.

Thank you everyone for your words and input. Jem, I am so jealous! A Caribbean cruise is just what I need right now. Some sun on my bones!

A bagel?? A mere bite of one of these hurts like hell for me and then the late onset dump kicks in two hours later. I just can't tolerate even a teeny bit
Pasta does the same. Yet I can eat my homemade bread without too much difficulty... It's avoidance that's the hard part with the homemade stuff hehe

 

[chrisa]

So pleased you got to see the dietician I really hope something just starts to happen our bodies sometimes just kick start all of a sudden. The sun on your bones would be heavenly. We love our little emmy to bits. xx

 

[A.Positive]

To be honest Fem, it was just a bit of an experiment. I wanted to try something, anything and see what the outcome would be. I should have videoed the episode, then I could have played it back for all of you and we could have had a good laugh at my multiple facial expressions and groans! It did hurt too actually, despite the chewing. I think its safe to say Bagels are a resounding "No".

I was left with explosive bottom poop too and its still coming and seeing as though we (I) are sharing; I had a bit of an accident today whilst sitting on the sofa, if you know what I mean? It was utterly direful; so much so that my poor husband cried for me. The pain was tantamount to labour, my abs were rock hard! If only I could boast of a 6 pack to go along with it. Haha!

Debs, I am doing my best my lovely. I so appreciate your kind words; all I have is my mind and my writing at the moment. Sharing my story (the good and the bad and the down right sorrowful) has really helped me to deal with how I feel and to gain some perspective.

I had a very difficult conversation with my sister last evening. Well, I say conversation; she spoke and I was rendered speechless. I just couldn't find the words to either comfort her or explain again, why I am still am not prepared to consider a feeding tube. She says that my family have pretty much gotten their heads around the fact that I am about to die. They have planned my funeral and are making plans as to how my children will be raised and so forth. I am not sure if I should have been angry with any of them but I felt sorry for them all. For once there was no anger in her voice, no bitterness or resentment, just heartache and fear and desperation. This should have been my "Aha" moment shouldn't it? The moment that I heaved a sigh and said, "OK, just for you, I will have the tube fitted". But there was none of that because in my soul, it feels like a step backwards.

So much of what I have been through has been down to the Powers that Be, I have just had to deal with the the cards that were dealt me. My one and only choice now is whether to have further intervention, if I give that up, it feels as though my constant fighting (mentally and physically) will have been for nothing. I still need my say in all this.

 

[los in it]

Have to say , alex your such a fighter even in the darkest of times you still do what is right for YOU as tough as it may be at times to read I fully support you , I may never have met you but never the less the cyber support is there

 

[A.Positive]

But what does that make me? Selfish? I am wrestling with that reality now; doing what will enable me to live with my Bypass for the foreseeable future or what will keep my loved ones happy. They see my bones and are full of fear. I see my bones and look at them as reasons to fight even harder for what I believe in.

You know, when my surgical team told me a feeding tube was the only option while I waited for my bypass, I stood firm in my belief that my superfood powders would be enough to keep me alive. They were. So much so that the team could not believe how exceptional my nutritional levels were. I have such faith and trust in my process; I have to. Without it, what else is there?

 

[Blondie43]

I can honestly say that your recent posts have reduced me to tears! I am torn between you doing whatever it takes to make you well ( like your family) and respecting your opinion that it's your body and you know whats best for you! I'm rooting for you all the way in whatever decision you make! Xx

 

[femfrankie]

Alex you are a fighter hun..it's not selfishness at all. It's all about survival and with that in mind you do what you have to do to get you and family through it all xxxx

 

[kurstywursty]

This is so sad It must be terrifying. Good luck my darling xxx

 

[A.Positive]

Its again at times like this that I am so thankful that I have this site. I know I have not been on much lately but when I do pop on, whether I need you or not; I always leave with something that has enlightened me in someway. I don't need your permission, I know you know that. But it still helps to know that you understand where I am coming from completely. This is a place of solace.

Speaking with my mother this evening, and again there was a lot of talking and me listening and feeling that I could not say what I needed to which was "No". I was being told that my only option was a feeding tube now and that it needed to be fitted immediately. I said nothing. I was being told that by me refusing to go ahead with the procedure that I was making this everyone else's problem. I was being told that my children were probably worried sick deep down but couldn't verbalise their concerns. Sigh...I am not an unrealistic person, I don't live with my head in the clouds especially when it comes to my kidlets. One of my major concerns was how my children would cope. So far I can say they have not been effected in the long term by my health issues. I thank God daily that they are so well balanced and that my husband and I have done such a wonderful job in getting them through this. They ask questions and I am as open as I can be with them. They look at my body and make jokes about my wrinkly,flat bum and flat boobies (I shouldn't allow them to see me naked apparently."What are you thinking Alex"!) They sit with me on the sofa or in bed when I get too tired and we read and so homework and use ipads and laptops and draw. We still bake and cook and paint. The only things I can no longer do with them is go for walks and run but they do that with their father. I have made the most of the life I have now with them. They are flourishing.

"Making this everyone else's problem". So is that what this is all about? You don't want to have to deal with this anymore so you'll force me to do what you want in order to make your life easier?

 

[nicola1723]

I'm in tears reading your latest posts. I don't know what I'd honestly do in your situation; in fact I'm not coping well lately with being able to eat! I'm almost wishing I was like I was when I had the stricture and couldn't eat. Then it was out of my hands.
Then I sit and think about this from an outside perspective and I truly scare myself. How did I get here? How did this happen to me? I'm supposed to be happy now I'm thinner.
My heart is with you. Xx

 

[mouse57]

A positive I'm sitting in my bed reading your post and I feel for you, you have been a fighter all a long doing what you believe is right for you, because this is about you and you have to do what's right for you. Others can not live your life as you can not live theirs. It's such a difficult situation to be in, and all you can do is take the advice think about it and do what's right for you depending on how you feel. My heart goes out to you because this is not how this journey is meant to be. Be strong and do what's right for you and don't give up the fight.

 

[emma-louise]

I've read your recent posts with a lump in my throat....
You are extremely brave and yet throughout all of this you still come across so positive.
When I read what your having to cope with it makes me put my problems into perspective.
Please take care and do what's best for you xx

 

[chrisa]

My dearest cyber friend Alex, I have no answer and make no demands on you. It is a very difficult situation you are in but I suppose its the situation you have been in for a little while now. You are a fighter girl and I feel very proud of you for all the things you are still achieving i.e bringing your children up when life must be so hard and tiring. Bagels are difficult I tent to toast mine to help me out. The nj tube is your decision. If its the last stop for you then you keep on pushing and moving forwards until such a time comes a long when you feel there is nothing left but that. Lets hope you poor little body can kick start itself. Did you read SCOOTERS thread I am sure she suffered much like you and her family were also in the same position as yours they had prepared themselves to lose her. I think she still struggles greatly, however she wet back to work and has recently got engaged and making the best out of her life. I think you are doing whats right for you, at this moment in time, but I am sure there will come a day when your mind changes and you will want to try something else and when that happens we will still be here for ya keep talking Alex we here ya xxxxxx take care, I feel like I want to give you a good squeeze but I may break your bones lol, xxxxxxxxxxxxxxxxxxxxxxxxxx