The bad and the good!

[Brianna!]

My fistula/arm whatever infiltrated again. It's the stupid fistula's fault. It's really narrow, and the venous pressures were weird today, so they were adjusting it, and boom. Infiltration. I had the angioplasty, but they only worked on the arterial! UGHHH. My arm hurts so bad.

Other than that, I love my new center! They're really nice, and they actually use numbing spray on it! It still hurts a tad, but so much better than without it. I don't like the chairs though, because the nurses have to put the chairs back for you. I don't like to bother them. I have my own TV! Yay. These three hours go by so fast now!

My arm feels like it's popping. Does that mean the swelling is going down or something?

I think my botox in my bladder is working!!!! My mom is making an appointment for in a week or two. And then since I think it's working, the doctor's going to inject dye in my bladder and see how much it can hold. Finger crossed it will be more!

So as soon as that's all done, I can be active on the list!

Thanks for listening!

Brianna

[galvo]

Good on ya', Brianna. You are doing well!

[looneytunes]

Ouch on the arm but great news on the bladder!   

[Brianna!]

Thanks. =] I need to rant right now.

They were supposed to pull my catheter tomorrow, but they canceled it. You know, they want a month of good fistula use, before they take out the catheter? Well, I had a month at Children's but I only had two  good times at the new center, so they're going to keep it in for a month. I SPECIFICALLY told them, that the venous feels like it should curve, but they need to put the needle in straight. But do they listen to me? No. So my nurse at children's called and gave them "hints" about my fistula, and one of the hints was to put the needle in, not how it feels it should go, but straight on instead. So they listen to her, but they ignore me? I'm not stupid. I know how my fistula is. When it infiltrated, it felt fine, up until it infiltrated. So I didn't even know they were sticking me wrong.

I was supposed to have this catheter in for only like a month, until my arm healed enough for them to use it again. It's been about two months. Maybe even three. I'm so mad right now. I know it's my lifeline, and everything, but if they just listened to me, it wouldn't have infiltrated on Friday, and I would be able to shower soon. They're going to ruin my fistula. I'm about ready to just have them use the catheter until transplant. I'm sick of my fistula infiltrating.

I'm going to a concert Friday, and I wanted to be able to shower, and not worry about the catheter. They said I can wrap Saran wrap over the catheter and shower. I guess, I can do that, but I'll be so nervous, I'm going to get it wet.

[Rerun]

I will suggest this because you are young....even though I could never do it. 

LEARN TO STICK YOURSELF!  People who do it say they would never let anyone else ever stick them again.  I guess you can feel where you are going. 

Just a thought.

[Hanify]

I would suggest learning to stick yourself at any age!  Any amount of independence is good when you're on D.  Apparently the difference is incredible once you can do it yourself.

[monrein]

Mastery of anything new feels good.  Mastery of my own needles made me feel in charge at a time when I was feeling horribly undermined by my own body, (that weakened body was given great support from my strengthened mental resolve), earned me great respect from my medical team who treated more like a partner in my treatment, eliminated (almost completely) any pre-dialysis anxiety about the sticks especially if in a new unit or with a new nurse, resulted in a super straight, evenly developed, no aneurysms fistula that gave me 5 totally trouble free years of service (until transplant), put me far more in touch with my body and sensations, helped me to relate to pain in more functional ways and made me realize that courage is something I possessed but of which I was quite unaware. 

What always pleased me most was when a patient would ask me to help them get their head around it and when they managed to get to the point of doing their own needles it felt as if we'd climbed Mt. Everest together. 

I hate other people needling me, no matter how "good" they are, I am the best when it comes to MY precious fistula.

[Brianna!]

I can't even look, when they stick me! I don't know how I would be able to stick myself, if I can't even look when they stick me. I just started to look at the needles in my skin, like before they put the tape on, and before they pull it, and that makes me woozy.

[Maker]

Mastery of anything new feels good.  Mastery of my own needles made me feel in charge at a time when I was feeling horribly undermined by my own body, (that weakened body was given great support from my strengthened mental resolve), earned me great respect from my medical team who treated more like a partner in my treatment, eliminated (almost completely) any pre-dialysis anxiety about the sticks especially if in a new unit or with a new nurse, resulted in a super straight, evenly developed, no aneurysms fistula that gave me 5 totally trouble free years of service (until transplant), put me far more in touch with my body and sensations, helped me to relate to pain in more functional ways and made me realize that courage is something I possessed but of which I was quite unaware. 

What always pleased me most was when a patient would ask me to help them get their head around it and when they managed to get to the point of doing their own needles it felt as if we'd climbed Mt. Everest together. 

I hate other people needling me, no matter how "good" they are, I am the best when it comes to MY precious fistula.

I am so doing that!  Can't wait to learn to stick myself.  In a sick way, I think it will be kind of fun    I used to love giving myself Aranesp shots at home before I started dialysis, so I'm a bit twisted.  I will hopefully be reporting here on my self-cannulation journey in several months, God willing    And it will be adios to this horrible catheder.

[dwcrawford]

Yesterday I made a commitment to start self care.  Don't know if I can do it.  I'll be the first in my center on this program.  I'll be looking for support when they tell me to "stick it".

[willowtreewren]

You go Dan! 

And all of you who can stick yourselves! 

[Hanify]

I was talking to real live renal people recently, and they all did their own needles.  They all said that it was wayyyyyyyyy easier to gt it right when you do your own.  And if you're doing buttonholes and need to go in on the same angle each time, then it is much easier if you do it yourself.  I think it's a bit like when you brush your own hair you can be really rough, but if someone else does it it hurts like hell.
Hmmm, I think I am the first person on ihd to compare dialysis to brushing your hair ... but you know what I mean.

[monrein]

I was talking to real live renal people recently, and they all did their own needles.  They all said that it was wayyyyyyyyy easier to gt it right when you do your own.  And if you're doing buttonholes and need to go in on the same angle each time, then it is much easier if you do it yourself.  I think it's a bit like when you brush your own hair you can be really rough, but if someone else does it it hurts like hell.
Hmmm, I think I am the first person on ihd to compare dialysis to brushing your hair ... but you know what I mean.

Brushing your hair is a good analogy though Bern.  I used to practice the pain by pinching myself hard.  Pain is very different if you inflict it on yourself....both physically and psychologically.