Starting my diary today |
Jul 17 2011 |
Starting another entry today did one a while back and I dont know what happened to it? I was writing everything down on paper but thought I would try this for a while.
I went to church today and sang two songs, had a great time and it helps to go to the Lords house for me anyhow, Kinda doing better in the old spots but new ones appear daily. Just doing everything to stay out of the sun since it has helped me, I just get depressed lately because I had to leave my job and I am stuck at home till hopefully the cooler weather will come in September so for now I just try and deal with all the changes
I finally got my water system squared away and now I can take showers instead of bottled water baths, still itching and spreading Cant use the clobetesol ointment cause it was staining everything. Cant wait to go back to the doctor and try something new?
Well that is it for this day lets see if I can do this right this time and get this to file correctly ??
Comments (4)
I had big warts as a Child around 5 yrs old and my mother had them removed because I have 4 brothers who would tease me over them A big one my lip and one on my foot that was large enough to cause me pain when I wore shoes the others were on my hands. They never returned in those areas but developed smaller ones on my hands and arms I would always get Sunburned when no one else would and would get little bumps all over ,my body
The doctors Diagnosed me for years with several different things, From Shingles, Eczema, Allergies, even said I had sexual Diseases which was quite embarrassing for me and my family and I did not have any of these
I have the bumps and itching mostly on my left side,My Trunk area, leg, neck, scalp and even get them in my ears nose and eyes at times. I am small breasted Thank the lord for that, and have never been able to wear a bra, it is painful for me, even a seatbelt is uncomfortable, anything constricting me
I have one child and he is 27 years old and is a Border Patrol Agent He has shown signs but wont believe he has this. My mother has not had a bad time of it. She is 70 and they say she has had the shingles all these years. She was hospitalized at 16 with a major rash and they did not know what it was Kept her in the hospital for 3 days, but we are waiting for an outbreak so she can get diagnosed I am sure she has it also. I have a 4 year old niece that is showing severe signs also
My hands seem to be ok just a little trouble with nails not to bad yet
I praise the Lord That I have been able to hide it well all these years, My neck and leg are the most obvious I have bad days and good days I have not been in the sun since June at all
and that has helped, problem is when I get the good days I think I dont have to take the meds or apply the lotion several times a day, and then I relapse. MY husband has been feeding me fruit and I hate fruit, but I eat it cause I know it helps me and I take the 500mg of ultimate c which is helping.
I cant really ask my Church to pray for a healing because there is no cure So they pray for me to just get this under control It has been tough and I am trying really hard but sometimes I just get tired of it.
The doctors Diagnosed me for years with several different things, From Shingles, Eczema, Allergies, even said I had sexual Diseases which was quite embarrassing for me and my family and I did not have any of these
I have the bumps and itching mostly on my left side,My Trunk area, leg, neck, scalp and even get them in my ears nose and eyes at times. I am small breasted Thank the lord for that, and have never been able to wear a bra, it is painful for me, even a seatbelt is uncomfortable, anything constricting me
I have one child and he is 27 years old and is a Border Patrol Agent He has shown signs but wont believe he has this. My mother has not had a bad time of it. She is 70 and they say she has had the shingles all these years. She was hospitalized at 16 with a major rash and they did not know what it was Kept her in the hospital for 3 days, but we are waiting for an outbreak so she can get diagnosed I am sure she has it also. I have a 4 year old niece that is showing severe signs also
My hands seem to be ok just a little trouble with nails not to bad yet
I praise the Lord That I have been able to hide it well all these years, My neck and leg are the most obvious I have bad days and good days I have not been in the sun since June at all
and that has helped, problem is when I get the good days I think I dont have to take the meds or apply the lotion several times a day, and then I relapse. MY husband has been feeding me fruit and I hate fruit, but I eat it cause I know it helps me and I take the 500mg of ultimate c which is helping.
I cant really ask my Church to pray for a healing because there is no cure So they pray for me to just get this under control It has been tough and I am trying really hard but sometimes I just get tired of it.
It has been very helpful to read both of these posts. Tmoss--you sound very similar to me. I actually asked for the Latin name for this disease when I was in High School--I had just started taking Latin and figured there had to be one. Yay Keratosis Follicularis. Although when pronounced Darier's doesn't sound like the but disease--when written, well . . . I am a 34DD so I too get flare ups there--more so recently. Everything is worse recently and maybe it's because of the weather. Maybe it's because I moved to GA 5 years ago and don't have good enough doctors?? It seems like you guys have been given a lot of meds and although in High School I was given a lot of things, maybe since nothing worked, they don't try anything anymore.
Lilbearcub, I saw that you left your job. i've had to take several days off lately and the pain I have on the days I do go in is pretty unbearable. I work in an office on the phone, and sometimes I'm distracted by the pain, but I'm managing it right now. A couple weeks ago, my skin was so rough around my eyes it scratched my eyes so I had to take off and let my eyes heal.
I am very tired of this too now. I had a really decent two weeks when I went on vacation in June and it's so hard now being like this. o.k. I'm rambling, but i have a hard time focusing sometimes when dealing with this. I just want to call out today. My forehead is now dealing with what I'm sure is Shingles on top of DD and it's healing but it's like chapped lips all over my forehead and my cheeks right now. I think I will find a new dermatologist and discuss these meds that I'm seeing other people use. the only meds I know I can't use are Retinal-As and Dovonex. Thanks for your entries. and thank you lilbearcub for contacting me.
Lilbearcub, I saw that you left your job. i've had to take several days off lately and the pain I have on the days I do go in is pretty unbearable. I work in an office on the phone, and sometimes I'm distracted by the pain, but I'm managing it right now. A couple weeks ago, my skin was so rough around my eyes it scratched my eyes so I had to take off and let my eyes heal.
I am very tired of this too now. I had a really decent two weeks when I went on vacation in June and it's so hard now being like this. o.k. I'm rambling, but i have a hard time focusing sometimes when dealing with this. I just want to call out today. My forehead is now dealing with what I'm sure is Shingles on top of DD and it's healing but it's like chapped lips all over my forehead and my cheeks right now. I think I will find a new dermatologist and discuss these meds that I'm seeing other people use. the only meds I know I can't use are Retinal-As and Dovonex. Thanks for your entries. and thank you lilbearcub for contacting me.
I am really tired of it all lately too. I have been having a few bad days lately, but I just said a prayer and I know it will help with my attitude if nothing else.
The clobetesol is good for just touching up the open sores that come on my face body and ears, if I get one spot I put a tiny bit on and it vanishes within one day. problem is it stains everything and eventually probably your skin also? I dont know yet?
the doctor wanted me to use Amlactin lotion which you can purchase at the grocery store for around 15$ it gets rid of the old bumps on my face very well, but the open areas it burns badly
it will work for just the warty healed areas, I used it on my chin forehead and nose Old spots not open and it does smooth them Well!!
just some things I have learned in my few months of knowing about my disease Hope it might help someone else
One thing I have a lot of nervousness too call it distraction , and a few times in my life they prescribed me Valuim at 20yrs old and Xanex recently but the doctor changed it to hydroxyzine because it is non addictive replacement I can only take 10 mg and it still knocks me out I only take it at night and it seems to help with my nervousness
Seems to me this disease is very unpredictable and is very disabling to a lot of people but have been told there is no way to get disability for it?? That really doesn't seem right to me
Our skin is a major organ of our bodies and we don't have the protection like other people I do not understand that one??
Well Try and and take care of yourselves today and stay cool
Sincerely, Lil bear Cub
The clobetesol is good for just touching up the open sores that come on my face body and ears, if I get one spot I put a tiny bit on and it vanishes within one day. problem is it stains everything and eventually probably your skin also? I dont know yet?
the doctor wanted me to use Amlactin lotion which you can purchase at the grocery store for around 15$ it gets rid of the old bumps on my face very well, but the open areas it burns badly
it will work for just the warty healed areas, I used it on my chin forehead and nose Old spots not open and it does smooth them Well!!
just some things I have learned in my few months of knowing about my disease Hope it might help someone else
One thing I have a lot of nervousness too call it distraction , and a few times in my life they prescribed me Valuim at 20yrs old and Xanex recently but the doctor changed it to hydroxyzine because it is non addictive replacement I can only take 10 mg and it still knocks me out I only take it at night and it seems to help with my nervousness
Seems to me this disease is very unpredictable and is very disabling to a lot of people but have been told there is no way to get disability for it?? That really doesn't seem right to me
Our skin is a major organ of our bodies and we don't have the protection like other people I do not understand that one??
Well Try and and take care of yourselves today and stay cool
Sincerely, Lil bear Cub
Leave a comment
You must be logged in to leave a comment. Please register if you do not have an account yet.
Members who read this post also read:
Yes, being in the Lord's house is awesome. I haven't used clobetesol before. It stains stuff? So not only do you have to suffer with the itching and being uncomfortable, you are ruining stuff too. So what are you dealing with with your Darrier's? I am lucky and don't suffer much. I am ok in the sun if I'm not out too long, and I use SPF 5000