Feeling Overwhelmed

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Permalink Reply by Cindy Foe on July 10, 2010 at 2:11pm

First of all...im sending you a thousand hugs right now as a mother of a child with psoriasis and someone who also suffers from this disease....I know the feeling is overwhelming right now...you will have ups and downs with this disease for life, but know we are here to help you and here to listen to you vent...My daughter was diagnosed with psoriasis when she was 6 as well...although hers isnt bad at all...I have a severe case of psoriasis, I have been dealing with psoriasis since I was 13 years old....it is a battle you and your daughter will fight until we have a cure...i have two different types of advise to give her...first being a child with psoriasis....the most important thing to me when i was dealing with growing up with psoriasis is that my family was always there to support me...always there to listen to me cry or yell because i had to deal with this and my friends didnt...my parents always tried to keep in doing things normal like any other person my age....my mother and i are best friends and im pretty sure i have psoriasis to thank for that....everyday i would sit on my bed and do hours of homework while my mother rubbed all my creams on me....yes i said hours...i have always had it pretty bad....we would talk during these times....best thing is even though my mom didnt know how it felt to actually have it...she never said or did anything negative to me...she always let me vent to her about how much i hated psoriasis....she was always there for me....always....that is the best advice as a child with psoriasis...just always be there...listen...and try everything in your power to make her comfortable throughout life....this will make her a stronger person through the years.....now.....as a mother of someone with psoriasis......to be honest...even though i know exactly what it is and how it feels...i was devastated when i heard the words come out of our doctors mouth....i cried when we got home....but then it all sunk in...my daughter has seen alot that i have been through so she knows all about psoriasis and what to say to kids and adults about her skin...teach her all about psoriasis through the years....it is overwhelming as a mother to have to watch your child go through this pain...physical, emotional, and mentally.....not being able to take all this from your child is horrid...i know....just know you are part of the cure now family now and we are here for you to vent to...shoulder to cry on....someone to help you along the way.....we are all in this together...this is why we fight so hard for a cure....so our children dont have to grow up with this disease.....welcome to the family....feel free to message me anytime at all....im sending you lots of hugs and prayers..... :-)

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Permalink Reply by Jacki on July 10, 2010 at 3:02pm

Thank you, thank you, thank you! Your post made me feel so much better. Family right now is thinking this is no big deal, and the topical creams will cause an overnight cure. Wouldn't that be great? We have been through many, many health issues with my beautiful daughter in the past two years. Family has been there every step of the way (diagnosis and treatment of asthma, acid refulx and then a cancerous retropharyngeal tumor in 12/08-miraculously the tumor shrunk without intervention). I also realize in my experience that doctors can make mistakes, even top docs. Her history almost seems to be made up--who makes a wrong diagnosis of cancer? It turns out doctors are not perfect, so we as parents must educate ourselves and not be soley dependent on their advice. I am beginning to move to that phase and the sadness is disappearing.

So though it has been a rough couple of years, I think loved ones are just glad psoriasis is not "too serious". My husband is a trooper and a bit in denial because after the cancer scare what could be so bad? He also may be tired of reading all of the articles I have found for him to read in the last 24 hours! I have had rhumetoid arthritis since age 8, so I do know the awful feeling of being different, especially through the teen years. It really is amazing to hear how well you have handeled with grace your psoriasis and then your daughters as well. I guess being a parent truly can push you to your limits? To read the story of your mom makes me think about how I can help Kaylee become stronger. Thank you for sharing your story, I do not feel as alone now!
Jacki


Cindy Foe said:

First of all...im sending you a thousand hugs right now as a mother of a child with psoriasis and someone who also suffers from this disease....I know the feeling is overwhelming right now...you will have ups and downs with this disease for life, but know we are here to help you and here to listen to you vent...My daughter was diagnosed with psoriasis when she was 6 as well...although hers isnt bad at all...I have a severe case of psoriasis, I have been dealing with psoriasis since I was 13 years old....it is a battle you and your daughter will fight until we have a cure...i have two different types of advise to give her...first being a child with psoriasis....the most important thing to me when i was dealing with growing up with psoriasis is that my family was always there to support me...always there to listen to me cry or yell because i had to deal with this and my friends didnt...my parents always tried to keep in doing things normal like any other person my age....my mother and i are best friends and im pretty sure i have psoriasis to thank for that....everyday i would sit on my bed and do hours of homework while my mother rubbed all my creams on me....yes i said hours...i have always had it pretty bad....we would talk during these times....best thing is even though my mom didnt know how it felt to actually have it...she never said or did anything negative to me...she always let me vent to her about how much i hated psoriasis....she was always there for me....always....that is the best advice as a child with psoriasis...just always be there...listen...and try everything in your power to make her comfortable throughout life....this will make her a stronger person through the years.....now.....as a mother of someone with psoriasis......to be honest...even though i know exactly what it is and how it feels...i was devastated when i heard the words come out of our doctors mouth....i cried when we got home....but then it all sunk in...my daughter has seen alot that i have been through so she knows all about psoriasis and what to say to kids and adults about her skin...teach her all about psoriasis through the years....it is overwhelming as a mother to have to watch your child go through this pain...physical, emotional, and mentally.....not being able to take all this from your child is horrid...i know....just know you are part of the cure now family now and we are here for you to vent to...shoulder to cry on....someone to help you along the way.....we are all in this together...this is why we fight so hard for a cure....so our children dont have to grow up with this disease.....welcome to the family....feel free to message me anytime at all....im sending you lots of hugs and prayers..... :-)

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Permalink Reply by Molly Rose Anderson on July 10, 2010 at 11:47pm

This was a beautiful interaction to stumble upon. I would say that elementary school won't be as challenging as middle and high school, kids those ages are trying to define themselves, and often let their disease and humiliation define their characteristics. If you child opts for covering it up in the later years, I would be wary of the risk of self-harm, although I am sure your parenting skills will uplift your little one, and help prevent this type of downfall in teenage years. I am speaking from personal experience, my Dad never thought twice about me wearing long sleeves and pants in the summer, because he thought i was trying to cover the rash, when in reality I was cutting myself pretty badly. I can't imagine everyone with P is as mentally unstable as myself, but it is something to keep in mind, but please don't worry yourself over it, I am just sharing my knowledge.I wish you the best of luck, and your beautiful daughter as well.

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Permalink Reply by Jacki on July 11, 2010 at 12:17am

Thanks Molly. I actually was a high school social worker for 10 years and now am an administrator in a high school. My husband always tells me I have seen and know too much. I pray that if my daughter has struggles I will see them loud and clear. How this can impact her self-esteem is a concern for me. However, I know I need to deal with the here and now...and be confident that I have the training to pick up the cues of concern. I would be lying if I said I am not scared of the teen years, for many reasons. Thanks for your post, it made me realize that though I need to relax, I need to keep my eyes wide open....regardless of how she seems to be coping or how our family thinks of it as no big deal. I wish you nothing but the best. Take care.

Molly Rose Anderson said:

This was a beautiful interaction to stumble upon. I would say that elementary school won't be as challenging as middle and high school, kids those ages are trying to define themselves, and often let their disease and humiliation define their characteristics. If you child opts for covering it up in the later years, I would be wary of the risk of self-harm, although I am sure your parenting skills will uplift your little one, and help prevent this type of downfall in teenage years. I am speaking from personal experience, my Dad never thought twice about me wearing long sleeves and pants in the summer, because he thought i was trying to cover the rash, when in reality I was cutting myself pretty badly. I can't imagine everyone with P is as mentally unstable as myself, but it is something to keep in mind, but please don't worry yourself over it, I am just sharing my knowledge.I wish you the best of luck, and your beautiful daughter as well.

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Permalink Reply by Darlene Schweitzer on July 15, 2010 at 9:17am

Hello Jacki,

I wanted to write you a little note of support and hope. My daughter and I both have Psoriasis and Psoriatic Arthritis. We both got it when we were 12 yrs. old.

My daughter and I have been through some very difficult times with both the Psoriasis and the PA. When she was 16 yrs. old she had a rough time and the Drs. could not determine what was wrong with her for 7 mths. Finally, after seeing a rheumatologist they pinpointed what she had and tried the meds which helped short term. Now she is on a biologic which has helped her a great deal. Please know that there is hope. :) I know that at such a young age you have to be cautious with medications.

My daughter is now 21 recently had a really bad break out with the psorasis and she was covered about 80 % of her body in the quarter size patches. She has tried several options for her skin and they have helped a great deal. She has soaked in oatmeal baths, dead sea salt baths, and used tea tree oil on her patches which all have helped her a great deal. She thought the oatmeal baths helped with the itching and made her skin feel softer. She alternated with theses items which can be bought in the stores and online. She also used lotions, Mavena and Gold Bond.

If you live in the Chicago area (which I do), there is a place called the Mavena Center in the Arlington Hts. area where patients of Psoraisis can go for treatment, some insurances cover it. They soak in the Dead Sea Salt baths and use light therapy together. They also have some dead sea salt products on line to try. That is another option to consider if your insurance covers it.

As for myself, I have plaque, guttate and scalp psoriasis which has been a life long problem for me, but I continually find things that help ease the symptoms...they may not take it away totally, but right now I am in a great state of being almost clear except the scalp.

I also use pure olive oil which at night I lightly rub on my scalp, legs, and patches too, also try to and get vitamin D (the sun) for at least 15 min. a day when possible. If I can't get in the sun, I take Vitamin D capsules. My vitamin D levels where really low a little over a year ago and I truly believe that the combination helped clear my skin a great deal in places that haven't been clear since my teen years. This may not work for your daughter because each person is different, but it doesn't hurt to try. You have to use it frequently but it worked for me.

I have learned a great deal from my daughter about attitude and being positive. As a parent seeing her suffer at times has been very hard for me, yet seeing her be positive and not letting this get her down is very encouraging too...she keeps smiling, laughing and stays active. Sure she has her bad days, but she tries very hard not to let it get her down. Positive reinforcement is great for little ones.

I hope that your daughter is doing better, I will be keeping her in my prayers.

Darlene

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Permalink Reply by Michael O. Bell on August 9, 2010 at 8:43pm

Jacki,

As I am new to this skin disease too, I know how you feel more than once i was overwhelmed and feeling lost and un-hopeful, but there is help and you need to talk about it and just go about it day to day. If you get overwhelmed just sit back relax take a deep breathe. I am seek help now and living, just trust in friends and family and let God take control sometimes. Will be praying for you!! Take care!!

Michael ; 0 )

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Permalink Reply by Jacki on August 9, 2010 at 11:32pm

Darlene,
We were away on vacation when I read this on my phone and I am not sure my reply posted. Sorry for the delay.

Thank you for the kind reply. I am feeling a bit better nearly a month after Kaylee was diagnosed. The good news is that when we returned from vacation she was 100% clear. So I know there is hope...no stress and lots of sun with low humidity. Now that we have returned to Chicago, the plaque is back as bad as ever over her scalp and skin. But even though she is 6 I think she has a sense that we can beat this, somehow together. There are days when she does not want the cream on at all. Even though she is just 6, I have learned to not make her. I know skipping doses does not help our cause, but truly I have to keep my sanity (and hers), so if there are days she is exhausted and it sets us back, then so be it. Also, while on vacation I taught my husband how to apply the 4 different meds. This will be a huge help since I work in a high school and my hours can be brutal. So thank you for your kind words. The day I received your post I was feeling pretty low and it really perked me up. The suggestion of going to the place in Arlington Heights is a good one. I wonder how quick of a response you have seen? She is in a wedding in September and I wonder if it is worth it to go before hand.

I wish you and your daughter complete health and happiness. Please know that by taking the time to share your story, you really made a difference for me. Take care.
Peace,
Jacki

Darlene Schweitzer said:

Hello Jacki,

I wanted to write you a little note of support and hope. My daughter and I both have Psoriasis and Psoriatic Arthritis. We both got it when we were 12 yrs. old.

My daughter and I have been through some very difficult times with both the Psoriasis and the PA. When she was 16 yrs. old she had a rough time and the Drs. could not determine what was wrong with her for 7 mths. Finally, after seeing a rheumatologist they pinpointed what she had and tried the meds which helped short term. Now she is on a biologic which has helped her a great deal. Please know that there is hope. :) I know that at such a young age you have to be cautious with medications.

My daughter is now 21 recently had a really bad break out with the psorasis and she was covered about 80 % of her body in the quarter size patches. She has tried several options for her skin and they have helped a great deal. She has soaked in oatmeal baths, dead sea salt baths, and used tea tree oil on her patches which all have helped her a great deal. She thought the oatmeal baths helped with the itching and made her skin feel softer. She alternated with theses items which can be bought in the stores and online. She also used lotions, Mavena and Gold Bond.

If you live in the Chicago area (which I do), there is a place called the Mavena Center in the Arlington Hts. area where patients of Psoraisis can go for treatment, some insurances cover it. They soak in the Dead Sea Salt baths and use light therapy together. They also have some dead sea salt products on line to try. That is another option to consider if your insurance covers it.

As for myself, I have plaque, guttate and scalp psoriasis which has been a life long problem for me, but I continually find things that help ease the symptoms...they may not take it away totally, but right now I am in a great state of being almost clear except the scalp.

I also use pure olive oil which at night I lightly rub on my scalp, legs, and patches too, also try to and get vitamin D (the sun) for at least 15 min. a day when possible. If I can't get in the sun, I take Vitamin D capsules. My vitamin D levels where really low a little over a year ago and I truly believe that the combination helped clear my skin a great deal in places that haven't been clear since my teen years. This may not work for your daughter because each person is different, but it doesn't hurt to try. You have to use it frequently but it worked for me.

I have learned a great deal from my daughter about attitude and being positive. As a parent seeing her suffer at times has been very hard for me, yet seeing her be positive and not letting this get her down is very encouraging too...she keeps smiling, laughing and stays active. Sure she has her bad days, but she tries very hard not to let it get her down. Positive reinforcement is great for little ones.

I hope that your daughter is doing better, I will be keeping her in my prayers.

Darlene

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Permalink Reply by Jacki on August 9, 2010 at 11:33pm

Thanks so much Michael, your kind words and red ribbon gift were very kind. I wish you nothing but the best. Take care,
Jacki

Michael O. Bell said:

Jacki,

As I am new to this skin disease too, I know how you feel more than once i was overwhelmed and feeling lost and un-hopeful, but there is help and you need to talk about it and just go about it day to day. If you get overwhelmed just sit back relax take a deep breathe. I am seek help now and living, just trust in friends and family and let God take control sometimes. Will be praying for you!! Take care!!

Michael ; 0 )

• ▶ Reply

Permalink Reply by Darlene Schweitzer on August 10, 2010 at 8:48am

Hello Jacki

Thank you very much for your thoughtful words, I am glad that I could help in a small way. I am happy to hear that you had a nice vacation. Welcome back to ChicagoLand! :)

It is amazing to me how well the sun helps psoriasis. I am not sure if your daughter can get out in the sun for 15 minutes a day, but for me it helps a lot.

You asked about the Mavena Center and visiting it before the wedding, it may help her out and in my opinion worth the try...but if you can't make it there due to scheduling problems, you can stop by there to purchase the dead sea salt products to try at home or even go on line to buy them. You may even want to try the oatmeal baths and lotion. More and more, I read about moisturizing right after baths and how important that is for your skin to be moisturized while it is still damp. Try that for a few days and see what happens. I love Gold Bond Extra moisturizing lotion.

Thanks again for your kind words. :)

Darlene



Jacki said:

Darlene,
We were away on vacation when I read this on my phone and I am not sure my reply posted. Sorry for the delay.

Thank you for the kind reply. I am feeling a bit better nearly a month after Kaylee was diagnosed. The good news is that when we returned from vacation she was 100% clear. So I know there is hope...no stress and lots of sun with low humidity. Now that we have returned to Chicago, the plaque is back as bad as ever over her scalp and skin. But even though she is 6 I think she has a sense that we can beat this, somehow together. There are days when she does not want the cream on at all. Even though she is just 6, I have learned to not make her. I know skipping doses does not help our cause, but truly I have to keep my sanity (and hers), so if there are days she is exhausted and it sets us back, then so be it. Also, while on vacation I taught my husband how to apply the 4 different meds. This will be a huge help since I work in a high school and my hours can be brutal. So thank you for your kind words. The day I received your post I was feeling pretty low and it really perked me up. The suggestion of going to the place in Arlington Heights is a good one. I wonder how quick of a response you have seen? She is in a wedding in September and I wonder if it is worth it to go before hand.

I wish you and your daughter complete health and happiness. Please know that by taking the time to share your story, you really made a difference for me. Take care.
Peace,
Jacki

Darlene Schweitzer said:

Hello Jacki,

I wanted to write you a little note of support and hope. My daughter and I both have Psoriasis and Psoriatic Arthritis. We both got it when we were 12 yrs. old.

My daughter and I have been through some very difficult times with both the Psoriasis and the PA. When she was 16 yrs. old she had a rough time and the Drs. could not determine what was wrong with her for 7 mths. Finally, after seeing a rheumatologist they pinpointed what she had and tried the meds which helped short term. Now she is on a biologic which has helped her a great deal. Please know that there is hope. :) I know that at such a young age you have to be cautious with medications.

My daughter is now 21 recently had a really bad break out with the psorasis and she was covered about 80 % of her body in the quarter size patches. She has tried several options for her skin and they have helped a great deal. She has soaked in oatmeal baths, dead sea salt baths, and used tea tree oil on her patches which all have helped her a great deal. She thought the oatmeal baths helped with the itching and made her skin feel softer. She alternated with theses items which can be bought in the stores and online. She also used lotions, Mavena and Gold Bond.

If you live in the Chicago area (which I do), there is a place called the Mavena Center in the Arlington Hts. area where patients of Psoraisis can go for treatment, some insurances cover it. They soak in the Dead Sea Salt baths and use light therapy together. They also have some dead sea salt products on line to try. That is another option to consider if your insurance covers it.

As for myself, I have plaque, guttate and scalp psoriasis which has been a life long problem for me, but I continually find things that help ease the symptoms...they may not take it away totally, but right now I am in a great state of being almost clear except the scalp.

I also use pure olive oil which at night I lightly rub on my scalp, legs, and patches too, also try to and get vitamin D (the sun) for at least 15 min. a day when possible. If I can't get in the sun, I take Vitamin D capsules. My vitamin D levels where really low a little over a year ago and I truly believe that the combination helped clear my skin a great deal in places that haven't been clear since my teen years. This may not work for your daughter because each person is different, but it doesn't hurt to try. You have to use it frequently but it worked for me.

I have learned a great deal from my daughter about attitude and being positive. As a parent seeing her suffer at times has been very hard for me, yet seeing her be positive and not letting this get her down is very encouraging too...she keeps smiling, laughing and stays active. Sure she has her bad days, but she tries very hard not to let it get her down. Positive reinforcement is great for little ones.

I hope that your daughter is doing better, I will be keeping her in my prayers.

Darlene

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Permalink Reply by Tanya F. on September 14, 2010 at 6:08pm

Hey Jacki, 1st of all just take 1 big long breath..... there is always hope.... I'm 29 yrs, I started w/ my Psoriasis when i was 11ys.... their r wks when I wanna crawl under the sheets I not bother to come out, go to work or do anything, and there r those days when everything is perfect.
I am going to b honest w/ u, every person is completely different..... through my yrs of battle I only had a really clear period for about 2yrs.... than it comes back little by little, than it goes away. But my skin gets immune to the creams really fast, so I constantly have to change them.
BUT I HAVE HOPE LIKE NO OTHER!!!!! for 1 i have a very loving supporting parents and grandparents.... my friends r very understanding, and my my boyfriends.... all those ppl in my life add to my hope that mayb 1 day their will b cure or help or something.
Don't give up, and she will need u more than anything.

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