Wednesday, January 09, 2008

Ranting a bit, sorry...

I've avoided talking about our family's health issues the past few posts, because it seems like, in person, that's all I'm ever talking about. And I am so, deeply sick of having to think about my pain level, or Nana's radiation, or my aunt's rehab, or Big/Only Brother's EKGs, or the twins weight in exact ounces. I'm going to do the quick roundup, while I am feeling up to it.

I don't think I even mentioned it here, but my cousin C had her twins at 33.5 weeks, (right in the middle of all this other nonsense) and they're having some health issues too. Fortunately, they are both at home now, but one is still very slow to gain weight & is being tested for genetic disorders.

Big/Only Brother has had no further seizures, thank god, and they're looking into a connection between the flickering televisions he has to monitor at his job (as the head of security at a medical school) and his seizures. Both seizures occured in that room, and he recently found out that a predecessor had seizures in that room too. Perhaps they trigger a certain disposition to seizure activity? Who knows... but if this is the issue, at least it can be addressed and evaluated.

Auntie L is home from rehab, and making great progress. She's still not allowed on stairs, and is living on the bottom level of her home, which she's not too happy about. Her blood levels (don't ask me, IDK which ones: they're being semi-secretive about her actual condition) aren't where they should be, yet, but they're improving. She's doing really well for someone who was not expected - by the doctors, and by us - to make it past Thanksgiving.

Nana's radiation has turned out to be horrid: She had a reaction to her pain meds on Monday (her first day) that had her throwing up all day and night, leaving her dehydrated and we had to take her back to the ER, who hospitalized yesterday morning, rehydrated her and gave her a different pain med. They sent her back home again last night, after her second radiation, and it was marginally better: she still slept away about 9/10ths of the day (which is fine, except that she gets upset at herself for doing so), but there was no vomiting. Her pain was better controlled, but still pretty bad - it went from a 4/10 to an 8/10 over the course of the day. She slept better, but not well. We're in charge of caring for her, Mum & I mostly, although Dad or my sisters can be called upon when necessary (so long as it doesn't involve puke: SisterCh literally dropped what was in her hands and fled when Nana threw up on Monday night). PUS, her son? Yeah... he's pissed cuz she's not upstairs with him. But he can deal because A) she can't climb the stairs and B)I don't trust him to take care of a Chia pet, let alone my grandmother.

As for me, I hate HATE how selfish this makes me feel, but this is all so incredibly difficult on me - emotionally, yes, but also physically. Nana has my bed at night, which is fine, because I don't sleep anyways, but also my aches and pains are used to my bed, and they're having issues adjusting to trying to rest anywhere else. I'm required to do a lot more: for myself, since Mum's caring for Nana & for Nana, when I'm the only one there. It's a lot more movement, a lot more intensity, a lot more pain. Where my normal levels are 7 or 8 (out of 10), I know I'm functioning at a 9 right now. And barely functioning, at that. Between the stupid sinus infections, the double ear infections, and the almost unbearable level of pain (not to mention the stress of all of these situations, plus watching the baby - tomorrow's our first day since Nana started her treatments, and I have no idea how we're going to manage that: Disney movies seem to be my most realistic strategy - and helping to plan the wedding and the zillion other everyday things that have to get done.)

I think these are the times I would most like to kill the people who say things about CFIDS/FM like "You're just using it to avoid real life." Because, your real life? Doesn't stop because you're ill. You can't avoid your grandmother's cancer because you can't move without tearing up... you just have to deal. Having a chronic illness magnifies all the challenges you face during your life, it doesn't shield you from them AT ALL.

Now, I've got an appointment at the pain clinic, to discuss why this round of drugs is still not helping. After that, I've got to try to coax my 84-yr-old Nana into getting a feeding tube, because it's too painful for her to swallow. Obviously, my life is just peachy, b/c I've got all these 'excuses' to get me out of jail free.

Happy Wednesday, anybody who made it through the rant.


JaniceNW said...

I wish I could help. First off, I tell you to relax and if necessary make you to take some meds to keep your anxiety level down. We both know stress exacerbates your symptoms and you need some pampering and I'd even read to you.

I know it's easy to feel forgotten and since everyone is used to you being ill, you are most likely right. The critical and newly ill get the attention.

Living with a 9 in pain is unacceptable. Sweetie get some hardcore meds that will put you sleep narcotics. You need the rest and you need to stop worrying about everyone else for a few days at least.

Love you and worried about you.


Anonymous said...

Well I for one do not begrudge you a whole load of ranting when you have so much on your plate right now. Rant away!

You're amazing.

The Goldfish said...

Good luck with the pain clinic - I'm hoping that adjusting your pain meds may make a world of difference. They don't take problems away but they allow you to cope with just being at least.

I guess the thing in these situations is to see your own health and getting through this period as a project. Consider absolute minimum stuff you need to do; eat, rest (if not sleep) and keep clean. So consider carefully what you're planning to eat (so you don't have to do any prep) and consider whether you can skip bathing if you bathe very often.

And make sure that you're not doing anything else. You'll want to be spending time with those you love when they're in need, but it's easy to do more than is necessary; to become involved in every issue and concern, even those things which are completely out of your hands.

I imagine most of this is teaching my grandmother to suck eggs, but in any case take care and I hope that the worst of this crisis passes very shortly.