Hey everyone, sorry I haven't been on here as much as usual. Things have been unreal lately.
So my wife began radiation treatment and it suuuucks. Ordinarily radiation wouldn't be a big deal but they have to irradiate her esophagus, and it hurts her so bad to swallow that she doesn't want to eat. Unfortunately she has to eat if she wants to keep nursing Simon (she does). Her aunt had to have this same thing done, and by the end of the treatment she would rather have died than continue the treatment on her esophagus. So man, if you're the praying type... Anyhow, she now has all sorts of crazy tattoos all over her body to direct the machines.
I haven't seen Christina in over two weeks. I work part-time for a church and couldn't get away on Easter Sunday (figures) so we didn't get to spend the weekend together like we planned. My kids are unfortunately getting used to mom being gone and I have to try constantly to remind them that they still have a mommy. So FaceTime has been good for that.
The biggest problem is a deal with the insurance, which switched over to a new something-or-other in March without informing us of any of the consequences. So we've started getting huge bills for things we thought were covered. At this point, we will either get it sorted out or have to change our identities and move out of the country because nobody will want to have anything to do with us.
Keep being awesome. I love everybody here. LOVE. YOU.
AnialosCollies are love, Collies are life!Shadowbrook ColliesRegistered Userregular
Damn, that sucks about the insurance. Hopefully the pull their heads out they asses. If you need anything let us know, the SE++ Forum Family (TM) is here for you.
Also, as far as medications go, I never thought I'd be on as much as I am. With the ear infection that I'm dealing with, I have to take:
(3) Amoxicillin per day
(4) Lorazepam per day MINIMUM
(1) Prozac in the morning
(2) Ritalin per day
(1) Allegra-D per day
(2) Tylenol per day for the inevitable headache
and various other OTC things for whatever comes up. My body is rebelling.
It doesn't seem like much to a lot of people here, I'm sure (looking at you @Stale and @Munkus Beaver) but I went from taking literally no medicine ever to having a daily med routine. Also, I weigh more than I ever have in my entire life (147 lbs. -- my normal adult weight was 135 lbs.) and my blood pressure is really high. And my resting heart rate is also unacceptable, and the slightest physical activity really elevates it quick. I get up to 120 bpm or something ridiculous after small amounts of exercise.
But I don't feel like I can really talk about this to anyone except my doctors. Because compared to what Christina is going through, it seems really small.
Are any of the medications you're on prone to increase blood pressure? Not that you'd need any assistance in that area what with the stresses of life.
Ritalin might, I don't know. But honestly, it has been such a help with everything that I couldn't stop taking it right now if I wanted to. I feel like psychologically, I'm better than I have been in a long time. Physically, I am getting worse, though.
Yeah, I've been dealing with learning the ropes of being a parent of a child with disabilities, but I think all my troubles and stress still don't come anywhere near yours Josh. I'm still keeping you guys in my thoughts and hope that you eventually make it out of the darkness.
EDIT: FWIW, Paroxetine 30mg, has been helping me out immeasurably.
DisruptedCapitalist on
"Simple, real stupidity beats artificial intelligence every time." -Mustrum Ridcully in Terry Pratchett's Hogfather p. 142 (HarperPrism 1996)
josh, man, just...all I can say is that I'll be prayin' and yeah, if you're ever down SA way, you get free beer. Actually no you don't, not with those meds. But something.
Disrupted, if you don't mind me asking, what sort of disabilities are you dealing with?
Trisomy 21 aka Down Syndrome
In particular it means my 3 week old has a heart defect, hearing problems, and we've had to go to the ER twice in the past week for upper respiratory distress--because you never know when a simple cold might exacerbate her pulmonary condition. The good news--from what other parents of Trisomy 21 kids have told me--is that usually things get a lot more stable after the cardiologists correct the heart defect and the child can start developing somewhat more normally. But that's not for another few months.
On the plus side she is cute as a button and I love how everyone in the ER practically stops everything when she comes in just to see the cute baby. Now just if somehow I can get them to let me sleep during our frequent visits, yessss sleeeeep.
EDIT: I also missed out on PAXeast this year because, well, there is no way I'm leaving my wife alone during all this. I haz a geek sad.
DisruptedCapitalist on
"Simple, real stupidity beats artificial intelligence every time." -Mustrum Ridcully in Terry Pratchett's Hogfather p. 142 (HarperPrism 1996)
Disrupted, if you don't mind me asking, what sort of disabilities are you dealing with?
Trisomy 21 aka Down Syndrome
In particular it means my 3 week old has a heart defect, hearing problems, and we've had to go to the ER twice in the past week for upper respiratory distress--because you never know when a simple cold might exacerbate her pulmonary condition. The good news--from what other parents of Trisomy 21 kids have told me--is that usually things get a lot more stable after the cardiologists correct the heart defect and the child can start developing somewhat more normally. But that's not for another few months.
On the plus side she is cute as a button and I love how everyone in the ER practically stops everything when she comes in just to see the cute baby. Now just if somehow I can get them to let me sleep during our frequent visits, yessss sleeeeep.
That's super rough, man. You're a champ for not taking any chances with her health, though. Those ER visits are hell.
UnbrokenEvaHIGH ON THE WIREBUT I WON'T TRIP ITRegistered Userregular
oh man Josh, I saw the whole esophagus-radiation thing first hand with my Mom's cancer treatment. she basically lived off meal replacement milkshakes for a while. If you'd like, I can ask her if she remembers what flavours tasted the least like ass to recommend for Christina?
Yeah, well, the first visit on Saturday resulted in an admission to the cardiology unit because she had pulmonary edema. Fortunately they tweaked her medication so that she's mostly stable again, but there's still no telling what is "distress" and what is ordinary infant breathing, since we've only "known" her for a week after she was released from the NICU.
Still though, I'd die if something happened to my wife. I really hope your wife gets through this. If you ever have to go to Boston, I'd be happy to take your family out to dinner or something.
"Simple, real stupidity beats artificial intelligence every time." -Mustrum Ridcully in Terry Pratchett's Hogfather p. 142 (HarperPrism 1996)
oh man Josh, I saw the whole esophagus-radiation thing first hand with my Mom's cancer treatment. she basically lived off meal replacement milkshakes for a while. If you'd like, I can ask her if she remembers what flavours tasted the least like ass to recommend for Christina?
I've found Unjury to be the best brand.
Strawberry and Chocolate are my go-to flavors.
They also have a chicken soup flavor that isn't terrible.
By the way, @rhylith, I'm planning on going to Houston tomorrow through Sunday. Black Walnut Cafe, maybe?
I could meet up on Sunday for sure.
It's my birthday this weekend so I'll be busy Friday (party for me and 2 other April birthdays heh) and Saturday. Unless you want to go see cabin in the woods with me and a friend at the drafthouse Saturday afternoon? We don't have a time or anything yet though.
I'm sorry to hear that things are going poorly at the moment. I hope Christina is ok. Let me know if you can meet up.
Yeah, well, the first visit on Saturday resulted in an admission to the cardiology unit because she had pulmonary edema. Fortunately they tweaked her medication so that she's mostly stable again, but there's still no telling what is "distress" and what is ordinary infant breathing, since we've only "known" her for a week after she was released from the NICU.
Still though, I'd die if something happened to my wife. I really hope your wife gets through this. If you ever have to go to Boston, I'd be happy to take your family out to dinner or something.
She'll get through it. I'll kill her if she doesn't!
@rhylith Sounds good, I'll let you know if we are free on Sunday. I've still got your digits.
@Stale thanks for the flavor suggestions. Thinking about buying stock in Unjury now.
Anyhow, she now has all sorts of crazy tattoos all over her body to direct the machines.
Just_Bri_Thanks on
...and when you are done with that; take a folding
chair to Creation and then suplex the Void.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Are any of the medications you're on prone to increase blood pressure? Not that you'd need any assistance in that area what with the stresses of life.
Ritalin might, I don't know. But honestly, it has been such a help with everything that I couldn't stop taking it right now if I wanted to. I feel like psychologically, I'm better than I have been in a long time. Physically, I am getting worse, though.
yeah, amphetimines tend to make your heart flip out
Humor can be dissected as a frog can, but dies in the process.
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Munkus BeaverYou don't have to attend every argument you are invited to.Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPAregular
Yeah, Josh, try cutting back on the ritalin just a bit if you have heart issues.
Humor can be dissected as a frog can, but dies in the process.
So Christina is having difficulty swallowing even water now, which is a problem. She only has about two more weeks of treatment to go. Hopefully her final scan comes up clean and we can get on with our lives very soon.
Posts
So my wife began radiation treatment and it suuuucks. Ordinarily radiation wouldn't be a big deal but they have to irradiate her esophagus, and it hurts her so bad to swallow that she doesn't want to eat. Unfortunately she has to eat if she wants to keep nursing Simon (she does). Her aunt had to have this same thing done, and by the end of the treatment she would rather have died than continue the treatment on her esophagus. So man, if you're the praying type... Anyhow, she now has all sorts of crazy tattoos all over her body to direct the machines.
I haven't seen Christina in over two weeks. I work part-time for a church and couldn't get away on Easter Sunday (figures) so we didn't get to spend the weekend together like we planned. My kids are unfortunately getting used to mom being gone and I have to try constantly to remind them that they still have a mommy. So FaceTime has been good for that.
The biggest problem is a deal with the insurance, which switched over to a new something-or-other in March without informing us of any of the consequences. So we've started getting huge bills for things we thought were covered. At this point, we will either get it sorted out or have to change our identities and move out of the country because nobody will want to have anything to do with us.
Keep being awesome. I love everybody here. LOVE. YOU.
(3) Amoxicillin per day
(4) Lorazepam per day MINIMUM
(1) Prozac in the morning
(2) Ritalin per day
(1) Allegra-D per day
(2) Tylenol per day for the inevitable headache
and various other OTC things for whatever comes up. My body is rebelling.
It doesn't seem like much to a lot of people here, I'm sure (looking at you @Stale and @Munkus Beaver) but I went from taking literally no medicine ever to having a daily med routine. Also, I weigh more than I ever have in my entire life (147 lbs. -- my normal adult weight was 135 lbs.) and my blood pressure is really high. And my resting heart rate is also unacceptable, and the slightest physical activity really elevates it quick. I get up to 120 bpm or something ridiculous after small amounts of exercise.
But I don't feel like I can really talk about this to anyone except my doctors. Because compared to what Christina is going through, it seems really small.
No. Even if I did, they wouldn't begin to cover everything. Please don't take this that way, I'm just venting about stupid insurance stuff.
Ritalin might, I don't know. But honestly, it has been such a help with everything that I couldn't stop taking it right now if I wanted to. I feel like psychologically, I'm better than I have been in a long time. Physically, I am getting worse, though.
EDIT: FWIW, Paroxetine 30mg, has been helping me out immeasurably.
Trisomy 21 aka Down Syndrome
In particular it means my 3 week old has a heart defect, hearing problems, and we've had to go to the ER twice in the past week for upper respiratory distress--because you never know when a simple cold might exacerbate her pulmonary condition. The good news--from what other parents of Trisomy 21 kids have told me--is that usually things get a lot more stable after the cardiologists correct the heart defect and the child can start developing somewhat more normally. But that's not for another few months.
On the plus side she is cute as a button and I love how everyone in the ER practically stops everything when she comes in just to see the cute baby. Now just if somehow I can get them to let me sleep during our frequent visits, yessss sleeeeep.
EDIT: I also missed out on PAXeast this year because, well, there is no way I'm leaving my wife alone during all this. I haz a geek sad.
That's super rough, man. You're a champ for not taking any chances with her health, though. Those ER visits are hell.
You hear correctly.
I've got friends that go there often. I'm just not big on beer.
Still though, I'd die if something happened to my wife. I really hope your wife gets through this. If you ever have to go to Boston, I'd be happy to take your family out to dinner or something.
I've found Unjury to be the best brand.
Strawberry and Chocolate are my go-to flavors.
They also have a chicken soup flavor that isn't terrible.
Avoid the tomato and vanilla ones though.
Make sure you let us know when kiddo birthdays happen, because we will make things happen, ok?
I could meet up on Sunday for sure.
It's my birthday this weekend so I'll be busy Friday (party for me and 2 other April birthdays heh) and Saturday. Unless you want to go see cabin in the woods with me and a friend at the drafthouse Saturday afternoon? We don't have a time or anything yet though.
I'm sorry to hear that things are going poorly at the moment. I hope Christina is ok. Let me know if you can meet up.
Whoops forgot to @ you.
She'll get through it. I'll kill her if she doesn't!
@rhylith Sounds good, I'll let you know if we are free on Sunday. I've still got your digits.
@Stale thanks for the flavor suggestions. Thinking about buying stock in Unjury now.
Plus, I've got so much shit going on, I can almost always find an excuse to not be at home.
chair to Creation and then suplex the Void.
yeah, amphetimines tend to make your heart flip out
In the meantime, Simon is wonderful as always:
Even a little bit silly from time to time:
Jacob and Eliana are getting along just fine:
Jacob just went to a pony ranch on Monday:
I wish you all the best, and hope the next update we get is a good one
I love all the forum babies lately.