I'm writing about all this for two reasons:
#1 It feels good to vent
#2 Maybe something somewhere in my/our story will help someone else.
So very frustrated. Munchkin #2 had her worst headache yet this morning. We made it out the front door and to school but never made it into the school. She's now crashed out on the living room sofa snuggled up with a homemade heat pack and two fleece blankets. The A/C is really cold when it's over 100F outside.
She's taking 10mg of Methotrexate each week, up to 750mg of Naproxen each day as needed, and Cyproheptadine (I can't remember the dosage at the moment).
It's frustrating because I have to fight with her to take the Cyproheptadine (which is for the headaches). The neuro guy we saw here (who came across with a less than 0 bedside manner) thinks they are migraines. The rheumy here thinks they are caused by the methotrexate. I think they are totally 100% arthritis related because these headaches started about the same time her joint pains did 3 years ago. And I've been saying that all along to all the docs! But, never mind me, I'm just the mum. I'm just the one taking care of this child day in and day out. What could I possibly know?
So now, poor kid, is crashed out on the sofa and the worst bit is that she's missing two periods of Art class at school today. Art is totally her fave subject next to math and she's missed art off and on for weeks because of doc appointment times. But, I don't have the heart to wake her up. She never ever sleeps during the day, so I know something is really not right.
I called a good friend of mine here this morning. She has Lupus which is in the same kind of disease family as rheumatoid. I also should add that she has a successful career, a husband and two great kids - Lupus did not stand in her way. I can always count on her to be 'real' with me. She reminded me that we're almost ready to head to the home country for the summer where there is super support for diseases like this. She also picked up on the fact that I have been totally alone in dealing with this for my kid. There is basically zero support here for families of kids with rheumatological issues. There is totally zero support for the kids. My friend who has Lupus has lived here for two years yet has never been to a local doc; she does it all in the home country.
I have seriously felt like moving back to the home country because of this. There would be good to that because we'd have easy access to pediatric rheumatologists. It would be bad because we'd lose our lovely private school. Public schools back home can be totally utterly brutal to kids with any kind of medical anything. The public schools are brutal about sticking labels on kids. My friend tells me not to project; don't worry about possible future. Just get through today. Get through the week. Get on that airplane. Things always feel and look better after time in the home country.
Peace.
PS I have enabled comments for the first time. But, I have to approve them before they will be published.
#1 It feels good to vent
#2 Maybe something somewhere in my/our story will help someone else.
So very frustrated. Munchkin #2 had her worst headache yet this morning. We made it out the front door and to school but never made it into the school. She's now crashed out on the living room sofa snuggled up with a homemade heat pack and two fleece blankets. The A/C is really cold when it's over 100F outside.
She's taking 10mg of Methotrexate each week, up to 750mg of Naproxen each day as needed, and Cyproheptadine (I can't remember the dosage at the moment).
It's frustrating because I have to fight with her to take the Cyproheptadine (which is for the headaches). The neuro guy we saw here (who came across with a less than 0 bedside manner) thinks they are migraines. The rheumy here thinks they are caused by the methotrexate. I think they are totally 100% arthritis related because these headaches started about the same time her joint pains did 3 years ago. And I've been saying that all along to all the docs! But, never mind me, I'm just the mum. I'm just the one taking care of this child day in and day out. What could I possibly know?
So now, poor kid, is crashed out on the sofa and the worst bit is that she's missing two periods of Art class at school today. Art is totally her fave subject next to math and she's missed art off and on for weeks because of doc appointment times. But, I don't have the heart to wake her up. She never ever sleeps during the day, so I know something is really not right.
I called a good friend of mine here this morning. She has Lupus which is in the same kind of disease family as rheumatoid. I also should add that she has a successful career, a husband and two great kids - Lupus did not stand in her way. I can always count on her to be 'real' with me. She reminded me that we're almost ready to head to the home country for the summer where there is super support for diseases like this. She also picked up on the fact that I have been totally alone in dealing with this for my kid. There is basically zero support here for families of kids with rheumatological issues. There is totally zero support for the kids. My friend who has Lupus has lived here for two years yet has never been to a local doc; she does it all in the home country.
I have seriously felt like moving back to the home country because of this. There would be good to that because we'd have easy access to pediatric rheumatologists. It would be bad because we'd lose our lovely private school. Public schools back home can be totally utterly brutal to kids with any kind of medical anything. The public schools are brutal about sticking labels on kids. My friend tells me not to project; don't worry about possible future. Just get through today. Get through the week. Get on that airplane. Things always feel and look better after time in the home country.
Peace.
PS I have enabled comments for the first time. But, I have to approve them before they will be published.
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