Friday, June 08, 2012


I feel like I am held together tonight with thin threads and tape. I look whole and if you were to glance at me or talk to me,  I am my usual self. But if you look close, you will see the cracks and should I move wrong, it will all come crumbling down. Holding it together is not so much an act like it has been in the past, I do feel okay most of the time, but then something small happens and everything becomes so heavy, that I wonder how I will make it through.

Yesterday was my visa appointment in London. Long story short, I am not getting my visa. They cant issue me one under normal conditions. I can apply to homeland security and may get one, but there is currently a 6 month wait for these to come through. So once again, I have to tell my niece that she isnt getting her holiday. I feel so bad for her some times.

I also had clinic in London, mainly for a check up, but my breathing has been getting tougher and nosier. so they had a check down with the camera. Turns out, I now have scar tissue below the trach. This is not good news. We suspected that it would happen, but silently hoped that it would be a long way off yet. So next Tuesday I have to go back to see the boss and come up with a plan.

In the meantime, I am back in hospital and on my 3rd IV of the day. This afternoon they fitted a long line, which is a tiny tube that goes through a needle and is then threaded up in to the vein. It goes in at my elbow and extends to about my shoulder. These are thinner and last longer than a normal cannula, or they should. I have just had one dose of med through mine and it blocked 5 times. gah my arms are starting to look pretty shades.

Im tired. Really tired. London wore me out. I got to bed about 2am, they came to put the IV in at 6am. From then on, I have had a few 30 mins naps here and there. I came close to getting in trouble this morning. My machine had finished but it took about 90 mins for them to turn it off. I wanted to sleep and couldnt due to the alarms of the machine. II was about to just shut it down myself, but right now, need to avoid making enemies of the staff.

So tonight I am hoping to sleep. And hoping that they come up with a solution tomorrow, as coughing and breathing is getting scary and scary is harder to come with when exhausted.

But other than that. I had a great time in London. It was wonderful to see my niece relax. To be away from everything and having fun. Acting like a 12 year old should act. And today, she has been curled up on my bed with me watching tv. I really hope that she knows how much she means to me. I will try and post more tomorrow about London and some photos.


  1. Hi Kim . . . Sounds like a lot to cope with, plus no visa, that's just plain cruel. Is it because of medical issues, could you write to the homeland security people (you're good at writing) and explain what it's for and that you want to take your neice whilst you're well enough . . . It might just fall into sympathetic, understanding hands?
    I hope you got some good sleep last night . .. you're right, scary is a lot more scary when tired.
    I hope the boss comes up with a good plan for the scar tissue problem. Take care, I hope you feel you better today x

  2. Gee, you are brave. I should quit complaining right now about my own life. You seem so wise, too.

  3. Oh no! I’m so sorry for all your trouble getting a visa. It’s not usually easy for any average person, and while I can’t claim to know what your circumstance is, I understand from your post that it hindered you from getting a visa. That’s such a shame! Let’s hope you find a way around the troubles and eventually get a visa. Good luck!