Anyone coping with a debilitating disease on their own?

Rosie - posted on 02/19/2011 ( 4 moms have responded )

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Recently diagnosed with UCTD, which could convert to Lupus. I'm not sure how to handle this on my own and care for two small children. I'm without medication bcuz rheumatologit said it will lead to blindness. Don't need a pity party, just advice- thank you.

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Meagan - posted on 02/19/2011

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Not that this compares, but I have back problems that make it hard for me to even stand up on some days. I've been trying to get an MRI, diagnosis, and surgery (it's probably a herniated disc), but Dr's like to give out pain killers instead, something that I dont and wont use, even on the worst days.

I have a room that is completely baby proofed. Has a ton of toys. Table and chairs. Tv. All the essentials to keep a kid happy. In the mornings my back is always the worst, probably because over the day I get used to the pain, or it could be that I need to flip my mattress. Anyway, I make sure I have easy finger foods, like cereal, for my daughter to eat, and sippy cups ready to go, so I grab some finger food (unless I'm able to move enough to actually make breakfast), put milk in a cup, and throw it on the table, pop on the TV, and watch her eat. Then I lay down on the couch and wait until the advil kicks in enough for me to move, or until the pain subsides a bit.

Really, the best thing you can do for days when you are really really sick or in a lot of pain, is make sure you have a baby proofed room with toys, table and chair (if they are old enough to use it), and a couch or bed. It could be your room or an extra room, or their room if you can get a couch in to lay on. Get them set up, and lay down. If you have a baby baby, keep a playpen near by, and make sure everything is within reach, including diapers. It's easier, for pain, to change them on the ground (for me at least), but do your best. Talk to them, play with them, but rest.

It is a lot harder to parents when you have any type of problem that interferes with the textbook parenting, but you just work around it. It may seem unorthodox and to others it may seem lazy, but ultimately, a happy mom is a comfortable mom.

Also, if you have any family that can help you, whether it means you move in with them, or they move in with you, or even able to come over a couple times a day to help and check up on you guys, then ask them. I'm not sure if you are married or anything, so if you are, also talk to your husband, bf, fiance, whatever, and ask them for help.

And, keep looking for other "fixes". Although there may be no permanent solution, there may be herbal remedies or homeopathic solutions to help ease the symptoms. I know for some things massage is a remedy for short term!

It will be ok and you will find what works. DOn't feel bad though if you can't run around the playground with them every day though. Your not a bad mother, just facing different challenges. =]

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Christina - posted on 02/22/2011

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I was diagnosed with Lupus 5 years ago when I was 18, I have a perfectly healthy little boy and i only have issues when i have a flare but I refused to take the meds. they wanted to put me on until I'm done having kids because they have the posibility of making me sterial but you should see if she canr un more tests cuz the longer lupus goes undetected and with every flare up it causes more damage to your organs. What has worked for me is discovering what helps trigger a flare up and the pain and try my best not to trigger it, sorry its not much advice but thats the best I have

Rosie - posted on 02/20/2011

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Thank you Meagan and Becky. The Rheumatologist suggested plaquenil (antimalarial), but this leads to vision problems (like blindness). The pain is not relieved with motrin and aleve and I don't want to take NSAID"s long term either. Nsaid's can cause gastric ulcers that could be fatal. I wish I knew the best treatment plan for me. I also wish i could do more exercise to increase the range of motion of my joints, but my right foot is broken. What herbal treatments would you recommend?

Becky - posted on 02/19/2011

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My mum was diagnosed with lupus when I was 6 (22yrs ago). Left untreated it can severely affect the major organs so I would get a 2nd opinion about this. Read as much as you can on UCTD and Lupus to be informed & aware as doctors are not always very sympathetic or informative & you need to be able to ask questions & feel comfortable with your treatment. My mum was a single parent and I honestly don't know how she did it but all I can suggest is to try find as much support in your community as possible. Your child health nurse may be able to help you with what is available in your area.

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