- Joined
- Aug 10, 2011
- Messages
- 1,375
If you're actually planning to read this, put your seatbelt on.
My Crohn's is flaring today big time thanks to the stress of the last few weeks. My daughter's Crohn's is flaring again only THREE WEEKS after a VERY long VERY high dose course of Prednisone and now she's BACK ON IT AGAIN. We weaned her SO SLOWLY.
For those interested, here's what Sarah's been up against: http://www.sarah-story.com
She's pale as a ghost and covered in bruises even though we had her platelets counted and they're at 90K which is TERRIBLE for anybody else but good for her, so her ITP isn't technically a problem and so they won't give her any WinRHo, but then WHY is she bruising? WHY is her neck and chest covered in petechiae?
Why, when Prometheus Labs' tests show that 6mp is at therapeutic levels constantly in her system does she get such a mixed and turbulent result from the meds?
Why does 5-ASA make her condition WORSE? I'm on LOTS of Lialda all the time. AUGH!
I want to sign her up for clinical trials. I want to get her into the Mayo clinic. I want to fly her to Europe and get her Helminthic therapy.
But I can't do any of those things because I'm in so much debt that I'm not even sure how I'll get her to Boston on Tuesday for her appointment. I'm going to have to use my last remaining PTO day and then what about the next 4 months?!
My wife and I make good money. We live in a good neighborhood. Sarah goes to an excellent school. But I'm making pasta for dinner 2 nights a week not because we love pasta (we sort of do, but not THAT much) but because groceries have gotten so expensive we can't keep up. Our minimum debt payments every month, not even including the mortages, tops $1000.
I wanted to re-deck the porch this summer and add a wheelchair ramp for the rare day that Sarah wakes up and can't move because of paralyzing joint pain in her ankles, knees, hips, and shoulders. Can't do it. No money.
Last school year Sarah became embarrassed about her weight gain on Prednisone. Most of her friends are on maintenance meds for various things, but THEIR meds have weight LOSS as a side effect, every last one of them is rail thin. So, she stopped eating her lunches. In her twelve year old logic, she decided that she couldn't throw her lunches away at school or a teacher would catch her and she'd get in trouble. So instead, she hid them in her backpack. But then she was afraid to throw them out at home, either, so they stayed in the backpack. All of them. For months. We sat her down and had a long talk about body identity and security and the fact that she's actually quite fit. We also agreed to buy/pack her tastier, more appetizing lunches than the PBJs she'd been going to school with. The backpack, obviously, is completely destroyed. It was an expensive, sturdy rolling pack from LL Bean. We bought it to keep the weight off of Sarah's shoulders, ribs, and back because of her chronic pain issues. It had to be good quality so that it would have good casters that would roll on uneven terrain like a rough sidewalk or cracked asphalt without dragging. Now, I can't afford to replace it because I can't even come up with a spare $100. It's MADDENING that I'm in this position.
A lot of our debt is my own fault, but a good deal of it isn't. Too much of it is on credit cards at ridiculous rates. We already have a second mortgage. We're maxed up. I had no insurance in my late teens and early twenties (thank God we at least got enough healthcare reform in this country that my daughter can stay on my insurance until she's 26. If I had had that in my life, things would be very different now) and I got SLAMMED very early in life and I've been recovering ever since.
6 months ago I created a strict budget that will see the end of our debt, at least all of our high interest debt, in 4 years. But that's too long. Way too long. That's 4 years of pussy-footing around with Sarah's condition, treating it with kid gloves. Not pursuing things as aggressively as I should be by shopping around to more specialists like immunologists, another rheumatologist for a second opinion, maybe even following one of our favorite GIs down to Houston for the occasional consult on a tough issue. Can't do it. I'm worried about paying the tolls, for crying out loud, between here and Boston on Tuesday. I'm not even sure how I'm going to afford back to school clothes. My work clothes have threads hanging off.
My family is dysfunctional. It took me a long time to realize that and to distance myself from them. My mom is severely bipolar, but she's undiagnosed. She won't acknowledge that there's a problem. 2 years ago, I told her that if she would not see a specialist and get diagnosed and treated, then I wasn't going to let her around my daughters anymore because she's just not healthy for them. 6 months ago I finally cut off all contact with her. She calls 8-12 times per day. Yesterday, on Sarah's birthday, she showed up on the front porch with a card. I delivered the card for her and told her to go home. Miraculously, she did. In the past she's stood out in my driveway screaming until the police were called.
I'm almost as estranged from my dad. He worked 2 shifts for my entire childhood and so I barely know him. After he and my mom divorced, we saw him on weekends but everybody was depressed and no good times were had. All of our memories are bad ones. That's tough to come back from. He's in yet another dysfunctional relationship and so we don't see him often. He's underemployed right now and having problems of his own.
The remainder of my family is very well off and COULD help, but won't. They're dyed in the wool Republicans who don't believe in bailing anybody out. As far as they're concerned I've made my bed. Well, sure I have, but Sarah didn't, and she's suffering. No help from them. They all lost in the stock market in the past 10 years and are busy nursing their own wounds. They wouldn't lend me ten bucks let alone what we actually would need, which is somewhere around 30 thousand (!!!)
I don't know what to do. I've exhausted all the options. The only one left is a slow four year crawl out of this hole and Sarah's quality of life is going to suffer for each one of those four years, or in other words, THE REMAINDER OF HER CHILDHOOD. With the way things have been going for her and the luck we've had, I'm not convinced she HAS four more years.
I've thought about fundraising and that sort of thing, but surely "pay off our debt so that we can properly raise our kid" isn't a very compelling jingle, is it? The car washes and bake sales in the area are for kids with Leukemia, or brain cancer, or palsy, not Crohn's, and even then they're usually for [specific treatment] or [specific medical need] not a general we're-in-trouble-here-please-help.
If you read all of this and aren't thinking what a loser I am, kudos to you.
My Crohn's is flaring today big time thanks to the stress of the last few weeks. My daughter's Crohn's is flaring again only THREE WEEKS after a VERY long VERY high dose course of Prednisone and now she's BACK ON IT AGAIN. We weaned her SO SLOWLY.
For those interested, here's what Sarah's been up against: http://www.sarah-story.com
She's pale as a ghost and covered in bruises even though we had her platelets counted and they're at 90K which is TERRIBLE for anybody else but good for her, so her ITP isn't technically a problem and so they won't give her any WinRHo, but then WHY is she bruising? WHY is her neck and chest covered in petechiae?
Why, when Prometheus Labs' tests show that 6mp is at therapeutic levels constantly in her system does she get such a mixed and turbulent result from the meds?
Why does 5-ASA make her condition WORSE? I'm on LOTS of Lialda all the time. AUGH!
I want to sign her up for clinical trials. I want to get her into the Mayo clinic. I want to fly her to Europe and get her Helminthic therapy.
But I can't do any of those things because I'm in so much debt that I'm not even sure how I'll get her to Boston on Tuesday for her appointment. I'm going to have to use my last remaining PTO day and then what about the next 4 months?!
My wife and I make good money. We live in a good neighborhood. Sarah goes to an excellent school. But I'm making pasta for dinner 2 nights a week not because we love pasta (we sort of do, but not THAT much) but because groceries have gotten so expensive we can't keep up. Our minimum debt payments every month, not even including the mortages, tops $1000.
I wanted to re-deck the porch this summer and add a wheelchair ramp for the rare day that Sarah wakes up and can't move because of paralyzing joint pain in her ankles, knees, hips, and shoulders. Can't do it. No money.
Last school year Sarah became embarrassed about her weight gain on Prednisone. Most of her friends are on maintenance meds for various things, but THEIR meds have weight LOSS as a side effect, every last one of them is rail thin. So, she stopped eating her lunches. In her twelve year old logic, she decided that she couldn't throw her lunches away at school or a teacher would catch her and she'd get in trouble. So instead, she hid them in her backpack. But then she was afraid to throw them out at home, either, so they stayed in the backpack. All of them. For months. We sat her down and had a long talk about body identity and security and the fact that she's actually quite fit. We also agreed to buy/pack her tastier, more appetizing lunches than the PBJs she'd been going to school with. The backpack, obviously, is completely destroyed. It was an expensive, sturdy rolling pack from LL Bean. We bought it to keep the weight off of Sarah's shoulders, ribs, and back because of her chronic pain issues. It had to be good quality so that it would have good casters that would roll on uneven terrain like a rough sidewalk or cracked asphalt without dragging. Now, I can't afford to replace it because I can't even come up with a spare $100. It's MADDENING that I'm in this position.
A lot of our debt is my own fault, but a good deal of it isn't. Too much of it is on credit cards at ridiculous rates. We already have a second mortgage. We're maxed up. I had no insurance in my late teens and early twenties (thank God we at least got enough healthcare reform in this country that my daughter can stay on my insurance until she's 26. If I had had that in my life, things would be very different now) and I got SLAMMED very early in life and I've been recovering ever since.
6 months ago I created a strict budget that will see the end of our debt, at least all of our high interest debt, in 4 years. But that's too long. Way too long. That's 4 years of pussy-footing around with Sarah's condition, treating it with kid gloves. Not pursuing things as aggressively as I should be by shopping around to more specialists like immunologists, another rheumatologist for a second opinion, maybe even following one of our favorite GIs down to Houston for the occasional consult on a tough issue. Can't do it. I'm worried about paying the tolls, for crying out loud, between here and Boston on Tuesday. I'm not even sure how I'm going to afford back to school clothes. My work clothes have threads hanging off.
My family is dysfunctional. It took me a long time to realize that and to distance myself from them. My mom is severely bipolar, but she's undiagnosed. She won't acknowledge that there's a problem. 2 years ago, I told her that if she would not see a specialist and get diagnosed and treated, then I wasn't going to let her around my daughters anymore because she's just not healthy for them. 6 months ago I finally cut off all contact with her. She calls 8-12 times per day. Yesterday, on Sarah's birthday, she showed up on the front porch with a card. I delivered the card for her and told her to go home. Miraculously, she did. In the past she's stood out in my driveway screaming until the police were called.
I'm almost as estranged from my dad. He worked 2 shifts for my entire childhood and so I barely know him. After he and my mom divorced, we saw him on weekends but everybody was depressed and no good times were had. All of our memories are bad ones. That's tough to come back from. He's in yet another dysfunctional relationship and so we don't see him often. He's underemployed right now and having problems of his own.
The remainder of my family is very well off and COULD help, but won't. They're dyed in the wool Republicans who don't believe in bailing anybody out. As far as they're concerned I've made my bed. Well, sure I have, but Sarah didn't, and she's suffering. No help from them. They all lost in the stock market in the past 10 years and are busy nursing their own wounds. They wouldn't lend me ten bucks let alone what we actually would need, which is somewhere around 30 thousand (!!!)
I don't know what to do. I've exhausted all the options. The only one left is a slow four year crawl out of this hole and Sarah's quality of life is going to suffer for each one of those four years, or in other words, THE REMAINDER OF HER CHILDHOOD. With the way things have been going for her and the luck we've had, I'm not convinced she HAS four more years.
I've thought about fundraising and that sort of thing, but surely "pay off our debt so that we can properly raise our kid" isn't a very compelling jingle, is it? The car washes and bake sales in the area are for kids with Leukemia, or brain cancer, or palsy, not Crohn's, and even then they're usually for [specific treatment] or [specific medical need] not a general we're-in-trouble-here-please-help.
If you read all of this and aren't thinking what a loser I am, kudos to you.
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Make sure that you talk to your debtors and let them know that you're having trouble paying. If they want their money back bad enough, they should be able to help you out one way or another. Hopefully, that would help lower your monthly minimums. 
