I know I got a little better sleep last night because I actually drooled on my pillow. I have not drooled on my pillow in 2 weeks.
Katie, it is hard enough to get things done for me since I am disabled.
It is no one else prolem but my own. I see no reason to ask people I do not know to take care of my son. Like I would have known I would have gotten this bad off after having my son.
I also do not have family I would trust with my son.
Joonie there is a better answer, you're just not willing to admit it. That's all I have left to say, I'm not wasting any more of my time on this.
I am NOT asleep! He is NOT alone!
Dooze you ever hear of that? It is where you lay there and close your eyes, like resting them, but you are not asleep and you can hear everything around you.
He does not have run of the house. He is a very noisey little kid. I do not sleep while he is awake.
Just my 2 centsI DO get exercise. I go to wal-mart or somewhere EVERYDAY.
I DO NOT SLEEP thru the day! My mother in law comes and checks on us up to 2 times a day. I am Always awake and to the front door before she even gets the door unlocked. I lay in my bed to stay warm thru the day and watch TV, because I do not like to watch what son is watching.
I do not sleep and I very rarely dooze. My hubby doozes way more than I do, and he is healthy. He comes home from work and doozes on the couch.
No - I mean exercise. The reason I asked are you able is because I have no idea what you are able to do.
Fresh air, oxygen in and out, very helpful in sleeping.
If you are suppose to exercise when your joints are swelled and stiff then, yes I guess I can exercise, but if you are recommended not to exercise when joints swelled and stiff, then no I cannot excercise.
My RA is no where under control. The more I do the more swelling I get. And the worse the gelling gets when I rest. Which results in more pain.
I find I always sleep great when spending time out doors.
Also the phone gets turned off ( in the bedroom ) at night.
I have a fan on in the room ( white noise ) so I don't hear the outside stuff.
I don't have kids so I can't comment on that part.
I do not like outdoors, because I am allergic to the sun. I get these white scaley blotches on my face and body if I am outside in the sun for any amount of time. I have always been allergic to the sun since I was a kid.
It's not an allergy, it's a loss of pigment in your skin. Being in the sun brings it out. It won't kill you. Lots of people have it.Not to toot my own horn ,and keep in mind I was in good shape before all of this, but even when I was super stiff and my feet were really, really, swollen I got my exercise and felt less stiff afterwards. Sleep really well.
It is individual, and if you haven't done it before - a simple walk around the block will actually help keep joints mobile. And hopefully promote sleep.
Now the toot--I power walk 5 miles a day, 6 days a week. It is possible.
Arriscolwell - I had that skin thing- was a fungus-eww! Put a lotion all over-gone!I sure would hate that . Maybe a little walk when the sun goes down , like after dinner ?
I would bet your kids would love that !!
When ever we have nieces or nephews over that is one of the things they love and are just use to us doing , is taking a walk around the little lake after dinner .
No, it is not a fungus... when I was a kid they told my mom to keep me outta the sun. And if I stayed out in the sun, I would be very sick until the blotches went away. That is why I think I might have Lupus too, because I have a sun-sensitivity.
To tell you the truth, TheLa, I have not been able to walk a mile even when I was at my best physical shape. Most my knees are my worse for swelling and they are always swelled, some days swelled more than others.
My kids are outside right now playing. They are out there with their daddy. They play outside quite a lot, just I am not one to be out there with them.
Joonie; Have they ever checked your vitamin D level? Mine is low and I thought I got plenty of sunlight....but evidently I'm lacking. Low Vitamin D can cause all kinds of troubles. You might want to ask them next time you get blood work done. So sorry, I had swollen knees too. I'm just very stubborn, and dare I say it, vain. I had days that I thought, "How am I going to do this for the rest of my life."
I really lucky now, knock wood, swelling way down and feet feeling better. Back to regular exercise. And snoring on the couch at 8:30! I'm so fun!
Sick moms, working moms, not working moms, pregnant moms. I am sure that many times a mom has took a snooze or a nap from exhaustion before. I mean you go to bed at night and sometimes yor kids wake up in the middle of the night. A bad dream, or just to use the pody. My oldest was hyper i couldn't take my eyes off of him for a minute. My youngest son was always fine if i was on the same floor as him. If i went upstairs to clean he would play in his room. If i was down stairs cooking he would play in the living room which was just next to the kitchen. He was really into his his fisher price biuldings and cars and little people. I am not saying i totally ignored him while i was cooking dinner, I would peek around the corner at him and he would peek around the corner at me. Now if i tryed to leave him home with his dad while i went to the store. Or every day at daycare he would throw his fit. And at daycare i worked in the room next door, but every day he would throw his i want my mommy fit. He was pretty independent but would like to take a break from playing to crawl up on my lap and rub my face, he was a teddybear. My oldest hyper son was more apt to give me a kiss in flight as he zoomed by. The main thing is have you taught them well and is your house child proof. But well or sick it's ok to let them play. Personally if i did ever try to rest a little my kids would say hey mom read me this book or i'm thirsty or i want to watch Top Gun. But sure my kids i am sure i had put down for a nap before and layed down to rest myself. You do the same thing at night. Kids are pretty good at letting you know when they are awake.TheLa, you're right sorry. I was thinking of vitiligo(sp) I skipped over the dry flaky part.
Here is what it most likely is:
The other extremely common white-patch condition is called tinea versicolor. This is a mild, superficial fungal infection, somewhat similar to ringworm (true ringworm can also result in white patches). Since the affected skin doesn't change color well with sun exposure, it usually becomes apparent as white patches during the summer months. In the winter it may seem to disappear, or even seem to become slightly darkened patches as the surrounding skin gets paler (this is where the name versicolor comes from).
Tinea versicolor is most common in adolescents and young adults 15 to 30 years old (although it can certainly happen at any age). The infection is chronic and recurs easily, but it causes no other health problems. People are most susceptible to the fungus during hot months in humid areas. Taking steroids, excessive sweating, wearing tight-fitting clothing, and chronic illness can all predispose a person to tinea versicolor, but someone without any of these factors can still get this mild infection.
The patches of tinea versicolor can appear white, tan, or pink. The white patches look very similar to pityriasis alba. There are two good ways to tell them apart.
The most reliable way is to have a doctor gently scrape the white patch, dissolve the scrapings in potassium hydroxide, and look at what is left under a microscope. The classic "spaghetti-and-meatball" appearance of budding yeast confirms the diagnosis of tinea versicolor. A quicker and easier approach is to look at the patches under a black light. The patches of tinea versicolor will usually light up with a blue-white, yellow, or orange color.
Topical antifungal medicines are very effective for treating tinea versicolor, but there is a more convenient, less expensive, highly effective alternative. Selenium shampoos, such as Selsun Blue, are great at getting rid of the fungus. Simply apply a thin layer over the affected skin before bed (with a wide surrounding margin, since it may already be beginning to spread). Wash thoroughly the next morning.
The problem is that no matter what the treatment, it comes back easily. Whatever treatment is used for tinea versicolor, all bedding and nightclothes should be changed after treatment to prevent recurrence. Also, re-treating once a week for 3-4 weeks and then once a month for 3-4 months makes it much less likely to come back.
My grandkids gave me something on my head a few years back. I thought it was infentigo but doc gave me some precription shampoo for fungle infection and same stuff as in dandiff shampoo and it cleared me right up.
Kids do not get tinea versicolor and it does not get on the face.
I also have tinea versicolor, had it since I was 17. Took an antifungal pill for it after I had my daughter and then it came back after I had my son. Now I am using Nizoral cream for it.
tinea versicolor for me is brown and pink, never white. If it is scaley it is brown. Pink is when it first shows up.
You need to go to the link.
Kids DO get it, and it CAN be on the face. It's just not as common.
Tinea versicolor is most common in adolescents and young adults 15 to 30 years old (although it can certainly happen at any age). The infection is chronic and recurs easily, but it causes no other health problems. People are most susceptible to the fungus during hot months in humid areas. Taking steroids, excessive sweating, wearing tight-fitting clothing, and cchronic illness can all predispose a person to tinea versicolor, but someone without any of these factors can still get this mild infection.
arriscolwell2008-03-05 16:31:14Well, you tell that to my dermotologist. I asked him if kids could get it and he said no. I asked him if it was contagious he said no. In the phamplet he gave me confirmed what he told me. So... I am going by what my trusted dermotologist told me. Okay, live with the fungus. And you'll forever cling to your excuse of "I CAN'T go outside"
I can see how that's convenient for you.
Would you like me to find 50 MORE sites that say kids can, will, and do get it? Or are you REALLY that stuck on holding onto your excuses?
nevermind, don't answer that. I already know.
Joonie - sorry you have been having such a struggle the past few weeks, especially something new cropping up. It's always hard to know which way to go when our disease throws us a loop. Hopefully all the hard work you put in to get the insurance straightened out so you could get your scripts will turn into a good night's sleep for your whole family. Take care ~~ CathyIt is not that I can't go outside, I do like outside. I do not like the sun, it makes me sick. I am just sayin that when I was a kid that the white blotches after being outside made me sick. PLUS, I am on 2 meds that say to avoid sunlight.
Screw you, Katie, Ok? Go get laid and then maybe you will not have that bug you seem to have up your ass anymore. Ms. AlwaysGot2BRight and acts like she is superior than everyone else on the board.
Wear sunscreen and you can go out with those meds. Stay in the shade. There are such SIMPLE solutions for sooooooooo many of the problems you put out here, but you refuse them all.
Look at how many people have TRIED to help you. What was the point in you even posting this, if you're NEVER going to listen to anyone?
You got a TON of advice and you turned it all away. But but but but BUT BUT BUT.
What happened to your "excuse queen" signature line? Maybe it's time to put it back up.
At least this time you didn't say "well maybe I can try" and then NOT do it. Gotta look at the bright side, at least you're not a hypocrite.
I am not wanting a solution. I just want to be left alone with how I deal with my life. Now when I come on here talking about killing myself then you can give me solutions options. Until then, Leave me and my excuse self alone.
I am not like everyone else on this board, I am nothing like you, I am nothing like my former self. I always wanted to be in gymnastics, and be fit and healthy and be muscular and built and be able to kick a guys ass... that was my DREAM. But it will never come to be because my body will not allow me.
My other dream was to own a 4X4 truck that needed a ladder to climb up into and have mudd grip tires and painted pure chrome and everything chrome on it. But I will never get that dream either, because I cannot drive and I cannot climb up into the truck myself.
I have alot of dreams that within the last 3 years my J/RA has crushed to dust.
Come up with new dreams . All of our lives change all the time as do our dreams.
Life is what you make it even when we get knocked down ( like having Ra ) but you just have to come up fighting and kick some ass .
None of us are like we used to be and never will be again !
Joonie this is hard when you are young, well it's hard when you are older also. I am not trying to give you advise. You will someday find that you are proud of your self and your acomplishments. As we adapt and find things that we are good at. We adapt and have new goals and new dreams. So as you grieve for you old self which is normal. I promise you a bright new you that you did not even know was in there will appear and impress the you know what out of yourself and everyone around you. Also maybe the raise in meds and time will allow to acomplish these dreams. Not trying to give you advise, just some words of love and encouragement.
My new DREAM is to be the Mayor of my little town. I am really thinking of running for Mayor if and when my J/RA ever gets under control. AlwaysGot2BRight and acts like she is superior than everyone else on the board.
Right on Joonie....Right on!
Whew! Alot happened when I was gone! You know we all come to this forum with different needs, and personalities. Joonie maybe want you really need is just to vent, and perhaps a sympathetic ear.
I tend to want to fix things and move on. Life is too precious.
Katie seems to just be a straight shooter. Not so much a need to be right, but she isn't going to sugar coat anything.
I read plenty of other posts with simple encouragement. Why not focus on that?
most of my postings are to vent, or in my case to keep me from calling my mom and spill it all out to her. It upsets her to see me like this, and she THINKS my J/RA is all her fault. After she told me that some time last year, I stopped calling and telling her my J/RA problems because I know how it hurt her to hear it.
I stopped telling my hubby about it because he does not really care to hear, because he sees it first hand. PLUS, he thinks he is being cute when he makes me look like a baby and poke fun at me, but that is how he deals with it, and I have a hard time with him being that way when I need him to just say it will get better.
So the board is all I got.
I
totally understand, but can you see that it can get frustrating for some people to make suggestions and have them all get shot down?
I do get your needs though, so vent away!
By making this post it helped me to come to the conclusion that my insomnia was caused by my very first REALLY BAD Fibro flare. Fibro is a new thing to me, before I use to just lump it in with my RA isssues, but this Rhuemy she is trying to make me see the difference in them for some reason. What I think is RA, is actually more Fibro than RA, but RA is still a part of it.
I am still learning about J/RA & everything else just like everyone else on the board. I never claimed to know everything there is to know about JRA. I had no clue what I even had until after having my son and getting so bad off and then coming to this board and find out that what I had was an uncurable but treatable auto-immune disease. I am one of the few JRA'ers who knew nothing about what they had and I ACTUALLY thought what I had was old people arthritis (OA). But I now know, what I have and that I can get many other things to go along with it.
I am ignorant. I will admit it. I am ingnorant about many of things, but only because I do not care to know much about something until it is too late, just like a lot of people.
Joonie, I didnt mean back there that you are negleting your son, I just wondered if there was someone who could take him for a few hours while you get the sleep you need, if you are just laying there listening for him you still arent resting properly. Just try a few things that are suggested to see if they work, if they dont work then at least you have given them a go. If you stop trying then life becomes one long struggle. We all have pain( some to a lesser degree) some to a very high degree but we have to get on with life and work our way through it or we are giving in to the RA, FIBRO Etc. You cant let this disease beat you down. Are there any support groups in your area? I think it's human nature to hear someones problem and offer a suggestion. It seems odd to me to be so out of sorts about a situation and then have friends offer friendly advise and not want to give something a try. I can understand venting....everyone needs to do that on occasions; but when you have a problem that is so bothersome.....why not try some things to resolve those issues?
No one here wants to hurt you Joonie. I think you know most of your friends here honestly want to help you improve your life. That's what friends are for.
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