Last week I posted some assumptions about timelines, but then I saw a nurse who finally said something other than "it'll just be a couple more weeks" which throws those assumptions off, possibly by as much as two months.
Because I am tired and lazy, I shall now repurpose part of an email I wrote earlier today:
I saw the shrink for the first time yesterday and he
thinks the Ativan is making the depression worse, so he wants to step me
down off of it and start me on neurontin, starting tonight. It's
officially a seizure med for epileptics but off label it's good for
insomnia apparently, and I was already going to have to take it at some
point for the neuropathy in my feet. Apparently it also helps with
night sweats (yay instant menopause), so it could be the magic bullet.
It won't necessarily make me feel better in and of itself, but if I can
sleep better and stop the benzos I might do better anyway. We'll see.
-----
I just took the first neurontin and am going to head for bed. I have to be up at 8 to start my new dressing change routine so I'm ready for the nurse at 9:
1. Take pain meds (tomorrow it will be 2 percocets).
2. Take a hot shower and let the water flow over the tape for about 20 minutes while I try to pick up the edges of the tape.
3. Dry off and lay back down in bed while Bob cuts the tubing from the vacuum and injects saline solution back up the line into the foam in my chest.
4. Hold a hot, damp towel over the tape on my chest until the nurse gets here.
The idea is to get as much of the tape loose before the nurse gets here as possible to reduce the pain I'm having when we rip it off and take the foam out. My skin has always been super thin and sensitive - I break out in hives at the drop of a hat. Applying and removing the tape required to make a vacuum seal three times a week is taking it's toll. My skin is starting to chap, blister, and tear a little bit, and we can't put the tape someplace else, it has to be where it is for the vacuum to work.
So the goal is actually two things - reduce the trauma to my skin and reduce the amount of pain meds I need to take, so I can cut my opiate usage in half.
I really want my brain back. I hope this works.
Because I am tired and lazy, I shall now repurpose part of an email I wrote earlier today:
Giant holes in my chest are shrinking. They are now 14x2.5 cm on one side and 10x1 cm on the other.
I still stink, but not nearly as bad. The surgeon cut off a bunch of
the necrotic tissue to allow the vac to work the last time I was in
there, but I guess there is some more developing as the bottom of the
hole in my chest fills in? I don't know. The nurse assures me it's
normal, but the doc will have to cut it out again next time I see her
(week from Friday) so the stink is creeping back. -----
I just took the first neurontin and am going to head for bed. I have to be up at 8 to start my new dressing change routine so I'm ready for the nurse at 9:
1. Take pain meds (tomorrow it will be 2 percocets).
2. Take a hot shower and let the water flow over the tape for about 20 minutes while I try to pick up the edges of the tape.
3. Dry off and lay back down in bed while Bob cuts the tubing from the vacuum and injects saline solution back up the line into the foam in my chest.
4. Hold a hot, damp towel over the tape on my chest until the nurse gets here.
The idea is to get as much of the tape loose before the nurse gets here as possible to reduce the pain I'm having when we rip it off and take the foam out. My skin has always been super thin and sensitive - I break out in hives at the drop of a hat. Applying and removing the tape required to make a vacuum seal three times a week is taking it's toll. My skin is starting to chap, blister, and tear a little bit, and we can't put the tape someplace else, it has to be where it is for the vacuum to work.
So the goal is actually two things - reduce the trauma to my skin and reduce the amount of pain meds I need to take, so I can cut my opiate usage in half.
I really want my brain back. I hope this works.
get some adhesive remover to loosen the tape. goo gone will work. see if they can put skin prep on before the tape, it should be compatible.
ReplyDeleteI tried conditioner in the shower this morning and I think it helped. They do use skin prep. I'll try goo gone around the edges, I just don't want it actually in the wound. :)
DeleteThis comment has been removed by a blog administrator.
ReplyDeleteI hope neurontin works for you - it was a miracle drug for me with my pain and headaches, except...it completely zeroed out my sex drive AND made me constantly fantasize about cookies. Not cake or other sweets, but specifically cookies. And I gained like five pounds in one week. I was only on it for two weeks before realizing it was not the drug for me, but I would take it again in a heartbeat if it weren't for the lack of a sex drive thing.
ReplyDeleteThinking of you!
Interesting. Were you taking it around the clock? I was taking an ativan at 7:30 and then again at 11:30 if I wasn't asleep yet, and he wants me to keep the early ativan and then take the neurontin when I go to bed for the next week or so, and then we'll up the neurontin as needed. I'm hoping that I'll skip some of those symptoms since it won't be in my system 24/7.
Delete