I'm not quite sure what I should be counting now.
Two weeks since that near transplant experience, or nine weeks and two days on the waiting list.
The bruising on my neck, arms and wrists is subsiding, but I get a really achey back each night from the ten epidural attempts. My back is itchy, but when I scratch it, it's numb. It's very bizarre.
After ten days, that horrible nauseous anxious feeling finally went away. I've been able to start eating properly again this week, but the waiting feels different now.
It's made it even harder to make plans, or committments to anything, because now I know for sure that when that phone call comes, I have to just drop everything and go. Some people face years of this. It doesn't bode so well with my control freak / always maintain committments and promises type personality.
I've had lots of weird and wonderful comments over the last couple of weeks. Some people really don't understand how organ donation and transplants occur.
Hmmmm it's been interesting to say the least....
2 comments:
O dear. Those epidurals. Did they eventually cause the correct pain blockage? With my first baby I had about an inch and a half of vertical relief down one leg (let me just say that some relief, however small a part of your body, is better than none!). With the third baby I was affected in the same percentage, same leg but in the reverse - total block except for that inch and a half. I hear itching is a normal side effect. Need to start chopping up those tshirts to keep your mind occupied. Expectation postponed is certainly a terrible thing to deal with. Thinking of you. Cherrie
I've recently started reading your posts.
You are so much sicker than I am, but I have been sick for 2 years with seemingly no answers why.
As for patiently waiting, as my lungs have steadily begun to fill up again, people run away from me on account of my cough, and I nurse a broken rib from said cough, I arrived home yesterday to a letter from RMH postponing my respiratory appointment from next week to late Jan.
I can't even begin to understand how you feel waiting for that phone call, and even worse, trying to return to "normal life" after a false alarm.
I feel very impatient, and flat - physically and emotionally, as I wonder if they will ever find a cause for my funky lungs and a treatment.
I am encouraged by what you do with your life though. I never thought I'd have a long-term illness, and haven't really accepted that yet as there is no diagnosis.
You are in my thoughts and prayers.
Sonia xx
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