Vitiligo
Hello Everyone. Well, it’s been an interesting couple of days. It turns out I’ve lost 10 pounds so far these last three weeks from the issues with gastroparesis. Not that it’s hurting me at all. Don’t get me wrong, it sucks. But, I have plenty to lose and I’m getting my nutrients in so I’m not in danger of malnutrition or dehydration at this point. Just crankiness, headaches, nausea, fatigue, and the occasional throwing up. Fun. Oh yeah, and the weight loss. I’ll take that one.
So I took my eldest son to the Adolescent Ped. Doctor and mostly spoke with the resident. He has vitiligo on his neck and it’s spreading to his face. Vitiligo is an autoimmune disorder that attacks the skin and essentially destroys the pigment. Michael Jackson had Vitiligo and that’s likely why he bleached his skin, because it spread and he was embarrassed to have white spots all over his body. Vitiligo can be benign, it can cause some issues, and it can end up being co morbid with other autoimmune diseases. The Pediatric doctor is cock blocking my getting my son a referral to dermatology so I’m gonna have to get my momma bear pants on and teach these people who they’re dealing with. The resident tried to tell me that we don’t necessarily want to have a label in my son’s chart because it will follow him.
http://www.mayoclinic.org/diseases-conditions/vitiligo/symptoms-causes/dxc-20319042
Really Dude!?! The label gets treatment and monitoring. He’s autistic. That “label” got him the IEP he needed in school. My getting diagnosed with Lupus was the difference between being treated for the disease I have and my not getting any treatment. Let’s not try to “we don’t want labels game and stone wall me Precious“, wrong woman. It needs to be in his records and monitored by an actual specialist in that area. I’ve been through it with schools and doctors. I don’t play games or simply listen anymore. I go to the patient advocate’s office and let them work for me. Smarter not harder. J
Today, when I picked up my 14-year-old from JROTC, I was alerted to the fact that they need assistance with the Raiders team. I use to volunteer and helped to run it when they were between Colonels. They have a colonel currently and he hasn’t exactly, “done the best job” to doing things like, his job. I’m not going to let the kids’ experience be ruined because of this dude so it looks like I’m teaching kids how to make rope bridges, land structures, and land navigation skills. They have a repelling event next month and these kids have to run the rope bridge portion of it so I will have my work cut out for me since pretty much none of them know how to do it. They say it all fell apart when I left. I got too sick to do it. If I have to wear a mask, I will make these kids badass lit, and ummm, I’ve never been a soldier, but that won’t stop me from making these kids badass little soldiers. Oh yeah, I’m also the dance teacher for the JROTC ball (Latin, Swing, and Simple Ballroom). The kids who remember me still call me Mom. I can’t let these kids down.
Also, weirdest thing but cool. I reconnected with my sister-in-law. We haven’t spoken in years. It was nice. My niece has vitiligo on her leg apparently and that got us talking a little. I don’t talk to most of my family but there are a couple people I actually would like a relationship with and my younger brother and his family are included in that category. Even if family members aren’t fond of me, if they have kids, I let them know what’s going on in terms of genetic diseases because whether or not they believe me, it’s my hope they’ll at lest consider these things as being, at least, possible for the kids’ sake. Now, my niece can say her cousin and she have something special in common instead of feeling along in having a white spot on her leg. My sister-in-law and I had a small conversation for the first time in over three years and it was nice. Again, interesting day.
Since I have these stomach issues, many scents cause problems for me. Coffee is a big one and I LOVE coffee so this is soul crushing. Some days I can get a sip or two of my magical dark French Roast Starbucks brand coffee fresh from the French Press. Then, I have to dump it all out or hurl. Oh it hurts my heart to do, but it’s worth the sip or two. I cannot handle a lot of smells, like teenage boy B.O…wow Raiders is gonna be awesome since I’ll be making them do burpees and such. I’ve played tackle football with the Raider team at one point. Yep, I was the only adult, let alone female, out there blitzing the boys and taking them down at the legs. They loved it and I love playing football or really any contact sport. So, yeah, mint gum and barf bags at the ready at all times.
Anyway, I got a hold of my local Scentsy lady to see what I could handle, bought some waxes, and thank God because I cannot do dog smell, but I’m not getting rid of my dogs. I can’t vacuum everyday like I use to so I have to fix this somehow. I’m also back to making my own cleaners.
Honestly, it’s cheaper to make your own cleaners, there are fewer chemicals, and you can alter the scent in accordance with what you like, or in my case, what I can handle.
Kitchen cleaner - 1 part water to 1 part hydrogen peroxide, a tsp or so of scent free castile soap as a degreaser, and scented essential oil.
Dish soap is the same thing with less water, more castile soap and vitamin E for your hands.
I also make my dishwashing detergent, and laundry soap. It’s cheaper and when I run out of what I make, I generally have the supplies to make more available so I don’t always have to make a run to the store for the one thing. I can post those recopies if anyone wants those too. I’m about to be making my own shampoo, body and face wash again. It was cheaper and they worked better. Again, I can post those recopies too. The thing about making these things yourself, is, you can dictate what goes in them, alter them to work for you, and you can use scent or not. It seems more difficult, but really, it’s easier than leaving to go to the store to buy it. They all take less time to make than it does to go to the store and buy them. Especially when I’ll always have enough supplies per ingredient purchase to make multiple bottles. When you’re sick or can’t plan things like this, having that as an option makes life easier.
Well all, I have to get to sleep. Perhaps this one wasn’t funny, but I hope it was at least interesting, and the soap recopies helps some people. When you’re sick and on a fixed income, cutting costs anywhere is a God send. Have a great night!
So I took my eldest son to the Adolescent Ped. Doctor and mostly spoke with the resident. He has vitiligo on his neck and it’s spreading to his face. Vitiligo is an autoimmune disorder that attacks the skin and essentially destroys the pigment. Michael Jackson had Vitiligo and that’s likely why he bleached his skin, because it spread and he was embarrassed to have white spots all over his body. Vitiligo can be benign, it can cause some issues, and it can end up being co morbid with other autoimmune diseases. The Pediatric doctor is cock blocking my getting my son a referral to dermatology so I’m gonna have to get my momma bear pants on and teach these people who they’re dealing with. The resident tried to tell me that we don’t necessarily want to have a label in my son’s chart because it will follow him.
http://www.mayoclinic.org/diseases-conditions/vitiligo/symptoms-causes/dxc-20319042
Really Dude!?! The label gets treatment and monitoring. He’s autistic. That “label” got him the IEP he needed in school. My getting diagnosed with Lupus was the difference between being treated for the disease I have and my not getting any treatment. Let’s not try to “we don’t want labels game and stone wall me Precious“, wrong woman. It needs to be in his records and monitored by an actual specialist in that area. I’ve been through it with schools and doctors. I don’t play games or simply listen anymore. I go to the patient advocate’s office and let them work for me. Smarter not harder. J
Today, when I picked up my 14-year-old from JROTC, I was alerted to the fact that they need assistance with the Raiders team. I use to volunteer and helped to run it when they were between Colonels. They have a colonel currently and he hasn’t exactly, “done the best job” to doing things like, his job. I’m not going to let the kids’ experience be ruined because of this dude so it looks like I’m teaching kids how to make rope bridges, land structures, and land navigation skills. They have a repelling event next month and these kids have to run the rope bridge portion of it so I will have my work cut out for me since pretty much none of them know how to do it. They say it all fell apart when I left. I got too sick to do it. If I have to wear a mask, I will make these kids badass lit, and ummm, I’ve never been a soldier, but that won’t stop me from making these kids badass little soldiers. Oh yeah, I’m also the dance teacher for the JROTC ball (Latin, Swing, and Simple Ballroom). The kids who remember me still call me Mom. I can’t let these kids down.
Also, weirdest thing but cool. I reconnected with my sister-in-law. We haven’t spoken in years. It was nice. My niece has vitiligo on her leg apparently and that got us talking a little. I don’t talk to most of my family but there are a couple people I actually would like a relationship with and my younger brother and his family are included in that category. Even if family members aren’t fond of me, if they have kids, I let them know what’s going on in terms of genetic diseases because whether or not they believe me, it’s my hope they’ll at lest consider these things as being, at least, possible for the kids’ sake. Now, my niece can say her cousin and she have something special in common instead of feeling along in having a white spot on her leg. My sister-in-law and I had a small conversation for the first time in over three years and it was nice. Again, interesting day.
Since I have these stomach issues, many scents cause problems for me. Coffee is a big one and I LOVE coffee so this is soul crushing. Some days I can get a sip or two of my magical dark French Roast Starbucks brand coffee fresh from the French Press. Then, I have to dump it all out or hurl. Oh it hurts my heart to do, but it’s worth the sip or two. I cannot handle a lot of smells, like teenage boy B.O…wow Raiders is gonna be awesome since I’ll be making them do burpees and such. I’ve played tackle football with the Raider team at one point. Yep, I was the only adult, let alone female, out there blitzing the boys and taking them down at the legs. They loved it and I love playing football or really any contact sport. So, yeah, mint gum and barf bags at the ready at all times.
Anyway, I got a hold of my local Scentsy lady to see what I could handle, bought some waxes, and thank God because I cannot do dog smell, but I’m not getting rid of my dogs. I can’t vacuum everyday like I use to so I have to fix this somehow. I’m also back to making my own cleaners.
Honestly, it’s cheaper to make your own cleaners, there are fewer chemicals, and you can alter the scent in accordance with what you like, or in my case, what I can handle.
Kitchen cleaner - 1 part water to 1 part hydrogen peroxide, a tsp or so of scent free castile soap as a degreaser, and scented essential oil.
Dish soap is the same thing with less water, more castile soap and vitamin E for your hands.
I also make my dishwashing detergent, and laundry soap. It’s cheaper and when I run out of what I make, I generally have the supplies to make more available so I don’t always have to make a run to the store for the one thing. I can post those recopies if anyone wants those too. I’m about to be making my own shampoo, body and face wash again. It was cheaper and they worked better. Again, I can post those recopies too. The thing about making these things yourself, is, you can dictate what goes in them, alter them to work for you, and you can use scent or not. It seems more difficult, but really, it’s easier than leaving to go to the store to buy it. They all take less time to make than it does to go to the store and buy them. Especially when I’ll always have enough supplies per ingredient purchase to make multiple bottles. When you’re sick or can’t plan things like this, having that as an option makes life easier.
Well all, I have to get to sleep. Perhaps this one wasn’t funny, but I hope it was at least interesting, and the soap recopies helps some people. When you’re sick and on a fixed income, cutting costs anywhere is a God send. Have a great night!
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