Unless my next MRI shows obvious new lesions, I may not get a definitive MS diagnosis for quite some time. (I have lupus already, and there's no good way to determine if my neurological symptoms are stemming from lupus, or if I have both lupus AND MS right now.)
I've shared this here before, but my husband is overseas and I have 2 children under 5, one of whom has special needs. I have limited help from my mother in law, but after a year of helping us while her son is gone, she is starting to get burned out, I think. She isn't "able" to do a lot of the things I need the most help with (grocery shopping, cooking food for my highly food allergic kids and celiac self, dealing with night wakings from both kids, etc.). She is able to occasionally watch my youngest while my oldest is in preschool, if I'm careful to schedule doctor's appointments during that window. But my kids have asthma, and my in-laws smoke in their house....so yeah, not a great solution.
We are fortunately able to pay a sitter/housecleaner come in 2 or 3 days a week to watch one or both kids, do the laundry, and sweep & mop (the tasks I'm pretty much unable to do anymore). But getting through the day is getting harder and harder, and it's going to be snowy here soon (upstate NY). I can barely drive, let alone knock snow off my car!
Even if my husband can find a job in the states when his current job ends this winter, it is highly unlikely to be around here. We can't afford to move, and my son gets medicaid because he is medically fragile- those programs are nearly nonexistent in some states, and our medical costs- even with primary insurance, our costs for just our kids runs over 40K per year out of pocket without medicaid.
So, what resources are out there for people like me? I can call around to some churches, but I feel weird about asking for help when we can't join a congregation (kids are immune deficient, I'm on immunosuppressants). United Way? Anything else? Would the MS society help since I don't have an official dx?
One of my biggest issues right now is cognitive decline, so locating the resources myself is kind of overwhelming. I mean, I can't even do simple math or spell much anymore.
It's so frustrating- I have tried asking neighbors, but I don't know anyone well, plus I'm a renter and that's not common in my neighborhood, so there's a bit of a bias there already. Also, I look fine, and I'm young, so it's hard for people to realize how badly I'm doing.
Rachel, 39 with celiac, systemic lupus and possible MS
I've shared this here before, but my husband is overseas and I have 2 children under 5, one of whom has special needs. I have limited help from my mother in law, but after a year of helping us while her son is gone, she is starting to get burned out, I think. She isn't "able" to do a lot of the things I need the most help with (grocery shopping, cooking food for my highly food allergic kids and celiac self, dealing with night wakings from both kids, etc.). She is able to occasionally watch my youngest while my oldest is in preschool, if I'm careful to schedule doctor's appointments during that window. But my kids have asthma, and my in-laws smoke in their house....so yeah, not a great solution.
We are fortunately able to pay a sitter/housecleaner come in 2 or 3 days a week to watch one or both kids, do the laundry, and sweep & mop (the tasks I'm pretty much unable to do anymore). But getting through the day is getting harder and harder, and it's going to be snowy here soon (upstate NY). I can barely drive, let alone knock snow off my car!
Even if my husband can find a job in the states when his current job ends this winter, it is highly unlikely to be around here. We can't afford to move, and my son gets medicaid because he is medically fragile- those programs are nearly nonexistent in some states, and our medical costs- even with primary insurance, our costs for just our kids runs over 40K per year out of pocket without medicaid.
So, what resources are out there for people like me? I can call around to some churches, but I feel weird about asking for help when we can't join a congregation (kids are immune deficient, I'm on immunosuppressants). United Way? Anything else? Would the MS society help since I don't have an official dx?
One of my biggest issues right now is cognitive decline, so locating the resources myself is kind of overwhelming. I mean, I can't even do simple math or spell much anymore.
It's so frustrating- I have tried asking neighbors, but I don't know anyone well, plus I'm a renter and that's not common in my neighborhood, so there's a bit of a bias there already. Also, I look fine, and I'm young, so it's hard for people to realize how badly I'm doing.
Rachel, 39 with celiac, systemic lupus and possible MS
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