Spotlighted Blogger: Interview with Lissa of “Psoriasis Girl’s Point of View”

Posted March 6th, 2012 by

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What A Psoriasis Outbreak Looks Like for Lissa

Welcome to the sixth installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Lissa, a PatientsLikeMe member who has lived with psoriasis for over a decade.  An early participant in our psoriasis forum room, Lissa appreciates the support of family and friends but has discovered an element of kinship through meeting other psoriasis patients.

Entitled Psoriasis Girl’s Point of View, Lissa’s new blog chronicles the ups and downs of recurring psoriasis outbreaks (which cover most of her body with itchy red plaques), working with a dermatologist and experimenting with different treatments and skin care regimens. Most recently, she explored UVB photo therapy and candidly showed the before and after photos of the initial results.  If you’re wondering how she finds perspective amidst these lifelong challenges, read on for inspiration.

1.  I see you first experienced psoriasis as a teenager.  How have things changed since you were first diagnosed?

You know how teens can be!  It was tough handling the criticism young people subject themselves and each other to.

My psoriasis became more of a permanent fixture on my body in my early-to-mid twenties, instead of coming and going as it usually did in my teens.  I suppose as the stress of being ‘part of the real world’ increased, so did my psoriasis outbreaks: working full-time in retail management and balancing going to school part-time, martial arts classes, and a relationship.  I eventually resigned from work in late 2010 to go back to college full-time and be a homemaker, with stress being an influential factor.  My stress level is fairly low these days, however the psoriasis remains uncontrollable.

A Photo of Lissa's Legs During an Psoriasis Outbreak

My thinking about psoriasis has certainly changed.  When I was a teen, I didn’t really put any thought into the fact that this is something I will deal with my entire life.  I guess I just assumed it would be minor and come and go, not knowing that I would one day be 85% covered, with it affecting so many aspects of my life, including trying to treat psoriasis while trying to conceive!  It’s a struggle but I know I need to stay positive.

2.  Your blog conveys a great attitude. What is the most stressful aspect of having psoriasis, and what helps you to cope?

In my blog, I’m just being real, just being myself: someone who is learning to be positive.  I truly believe the mind is powerful, and while I wish I could just think my psoriasis away, I know that staying positive helps.

There are many frustrations to having psoriasis, and I’m sure they vary from person to person.  I get stressed about money and affording prescriptions and treatments, stressed about public interaction when it’s hard to hide my plaques.  But one thing that really gets me feeling like I’m spinning down a dark hole is when a medication or treatment seems to be working and it looks like I will finally get all the psoriasis to go away and then new plaques begin to crop up and quickly spread like wildfire.

I cope by talking to my husband and getting back rubs, trying to stay positive and keeping my mind focused on something else, like reading or cooking.  I also think it’s important to exercise to fight stress.  As far as providing comfort to psoriasis, a good lotion that’s geared towards itch-relief, is fragrance-free, and thick and creamy is the weapon of choice to slather on deliberately as often as necessary between topical Rx applications.  Other than that, gotta let “the attitude determine the altitude.”

3.  Great to see you updating your profile often. Which profile tools do you find most helpful, and why?

I like the charts.  I like having the ability to track my symptoms, my mood, my quality of life, and so forth to look for patterns and connections.  I find them all to be in-depth, and they ask good questions. I tried keeping a journal in the past to track my psoriasis, but this is better because it’s easier to read, all on one page, color-coded, and more detailed.  I also like the InstantMe tool.  It’s like a status update.

The InstantMe Survey at PatientsLikeMe That Lissa Uses

The community aspect is great.  Between the forums, personal messages, following people, commenting on other patients’ InstantMe [answers], and updating your own info, there’s a lot to do on the site. When I first signed up, I wasn’t expecting all the useful tools – I just thought it was a community.

4.  What have you learned from fellow PatientsLikeMe members? Anything that has surprised or inspired you?

I’ve learned that there are other people that have their good days and bad days, just like I do.  They worry about similar things that I do, so we can bounce things off one another, seek advice and solace in one another.  We’ve talked about treatments and medicines, lotions, make-up, and fashion, and how we relate these things to dealing with psoriasis.  I’ve been inspired by other patients to try to feel better, and to try to make others feel better too, help them stay positive.

It’s nice to know there’s a community of real people who truly understand how I feel.  My husband and friends and family are empathetic and there for me, but the other patients are people who really know what it’s like to feel the way I’ve felt.  I really feel like I can talk about anything to some of the friends I’ve made through PatientsLikeMe.

Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)

PatientsLikeMe member ewilley


12 Comments

  1. How can I see your blog? I have been suffering with psoriasis for over a decade as well but I am still a college student and started much younger than you. Your psoriasis looks just like mine. I would love to be able to speak with you.

  2. Hi Carleigh,

    Here’s a link to Lissa’s blog http://psoriasispointofview.blogspot.com/

    and also to her PatientsLikeMe profile, if you’d like to connect there. http://www.patientslikeme.com/patients/view/173936

    There are others in our community who are college-aged with psoriasis, if you’d like to reach out! You can see some here— http://www.patientslikeme.com/patients?saved_search_id=3501

    Let me know if there’s anything else we can help with.
    Cheers,
    Liz

  3. […] doing our regular Twitter maintenance this morning, we came upon this article, on patientslikeme.com, featuring an interview with a long-term sufferer of Psoriasis. This skin […]

  4. Hi I suffered with psoriasis for years nothing like as bad as yours , it was only on my left elbow, a bid itchy patch.
    It always went away when I took a holiday in the sun only to return within a month of getting back to the UK. I read an article last week that said it could well be caused by a vitamin D deficiency. This makes sense as when on holiday my body would be pruducing vit D. Living above the 52 parralel UK we can never get enough vit D. I have been taking vit D for 5 years (not for psoriasis) But it vanished years ago and until reading that article I never realised that it could be the vit D that cured it? It’s so cheap to supplememt with I take an oil as drops 4000 iu a day costs £16 and lasts 6 months . Maybe you should research it.
    All the best
    Johnny

  5. Some scientific research in the early 1900’s showed that sometimes physician’s were able to clear up psoriasis with additional fat in the diet, especially cod liver oil, but sometimes with additional corn oil, too. In the 1980’s some parents who put their children on low-fat diets because they were worried about having fat children ultimately ended up creating psoriasis in their children. So this leads me to believe that some psoriasis patients might do better with additional healthy fats in their diets, and perhaps some enzymes too, because if they can’t break down fat in their digestive track, it ends up going right through. If this is the case, it could be documented with a stool culture that measures the amount of undigested fat in your stools. Sounds yucky, but although fat often gets a bad name, the truth is that you need some fat in your diet, and some people may need more than others. The skin has to have fat to be healthy. I have cleared up several cases of eczema with only the addition of daily cod liver oil and those patients were so delighted they have taken it every day since. It would at least be worth a try. I hope it is OK to give some nutrition counseling on this site. I simply hate to see people suffer, so I like to share what I have learned.

  6. Here is a link about psoriasis and before after photos. http://psoriasisdietplan.blogspot.com/2013/01/diet.html

  7. This is very attention-grabbing, You’re a very skilled blogger. I have joined your feed and sit up for looking for extra of your excellent post. Also, I’ve shared your website
    in my social networks

  8. Lissa, thank you so much for your blog! My 9 year old son has Psoriasis similar to yours in severity. We just got a light booth and he is starting treatment. Anyway, Iwas just reading about patients with severe psoriasis on hands and feet and it seems they respond better to the PUVA treatment that includes the internal medication you take before the treatments. This is more harmful than UVB but relative to you the suffering it causes might be worth it.

    Thanks again for your blog. You are awesome!

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  10. Excellent, what a weblog it is! This blog presents valuable data to us,
    keep it up.

  11. I’d change schools if I were you and then start from scratch.

  12. Helpful info. Lucky me I discovered your website accidentally, and I am stunned why this twist of fate did not
    came about earlier! I bookmarked it.

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