Saturday, July 31, 2010

The PsoriMom Story

     The intention of this blog is not only to spread awareness, but also to help others who have psoriasis understand that they are not alone in dealing with this devastating disease.  So today start getting personal and talking about my own case of psoriasis and psoriatic arthritis. 

    First let me explain a bit about psoriatic arthritis, since I haven't mentioned it much so far.  Psoriatic arthritis is pretty much like most other forms of arthritis, in that it causes painful swelling of joints and often extreme stiffness.  The main difference between this and other forms is that along with the arthritis, come the red, scaly patches of dry skin.  Psoriatic arthritis is painful, often debilitating, and exhausting.  When your joints are swollen, it decreases the room that oxygen has to flow through your body, which causes poor circulation and stiffness.  Imagine you have ordered a milkshake and instead of the nice, wide straw they normally give you, they say, "I'm sorry but all we have are these" and they hand you a regular tiny drinking straw. You will likely have a difficult time drinking the milkshake that way.  This is how I simulate the difference between having good circulation days where the joints are not swollen and oxygen has plenty of room to flow, versus the bad days where there is a lot of swelling and no room.  Also, when your body is not getting proper oxygen throughout, it works harder to try and force the air through, and this leads to feelings of fatigue or exhaustion.

Okay, so some of you may be saying to yourselves, "what does all of this have to do with you? (me, the writer, not you the reader)".  It is time to tell my story.   I had my first bout of psoriasis as a child in middle school.  I was 11 years old and  I developed a patch of dry skin on my right arm.  Having no idea what it was, other than that it was terribly itchy, I tried lots of lotions and itch creams.  Pretty soon it spread down from my elbow to my whole forearm and then to my left arm as well.  The patches weren't terribly scaly but the itch nearly drove me crazy.  At some point my arms started being affected by water.  Everytime I would try to wash dishes (one of my chores since we had no dishwasher) I would wind up in pain. It got to the point that even a bath was miserable.  My arms felt like they had been set on fire.  My parents could not afford to take me to the doctor.  Everyone we knew gave us suggestions on what it might be and how to treat it; they even had me take small doses of the medicine my dad was given for shingles, and one uncle suggested that we try a hemorrhoid cream to shrink the spots.  I was not amused with him.

    Eventually it was time for church camp that summer, and one of my favorite things to do there had always been to help out in the kitchen. I loved being around the ladies as they chatted and cooked meals for all the campers from our church.  I was always allowed to help with meal prep and I would gladly volunteer to help with cleanup afterward.  However, this year, the pastor's wife (and my very good friend) refused to let me do dishes since she knew how the water affected my arms.  Distraught by not being allowed to help, I forced myself to fill my time with outdoor activities instead.  Within just a few days I was surprised to find that my arms had totally cleared up!  I immediately attributed it to having spent so much time in the sunshine, but I did  not know why or how the sun would have helped; I was still positive that it had, though.

   So fast forward a few years and now I am 17.  I woke up one morning with a problem on my right foot.  Every time I put my foot down on the floor there is a sharp pain in my heel.  After a couple of days my mom thought it may be a heel spur.  I limped around on it for a while and about 4 days into it, my ankle starts to hurt.  Day 5 and it is my right knee as well.  By the time two weeks has gone by, both of my ankles and feet were hurting.  I tried every over the coutner (OTC) pain med that we could find.  I progressed to soaking my feet in warm water and Epsom salts for half hour periods two to three times a day.  Once again we could not afford to see a doctor.  I started sleeping on a mattress on the floor so that I could roll out of bed and crawl where I needed to go because I could not walk, it was simply too painful.  I missed two months of school.   Finally one day it was so bad that my mother took me to the emergency room.  Five hours and every imaginable test later, the doctor said he could see absolutely no explanation or cause for this issue.  He did ask me one question that I thought was strange though.  He wanted to know if I had any patches of dry skin.  I gave him an honest "no". The very next day I found a small patch of dry skin on my left knee, and for some reason I really wished it had been there the day before so that the doctor could have seen it, though I didn't know why.

     To make this long story shorter, the patches continued to increase, and some grew exceedingly large.  My scalp, around my ears, on my neck and my knees were the areas affected.  It was so bad on my scalp that I would wash my hair three times a day: morning, right after school, and right before bed, because the only time my head didn't itch was when it was wet.   It was about a year later that I discovered hydrocortisone cream.  I realized that it helped clear up the scales around my ears and on my neck.  I was super glad to find it!  But, even though my scales were gone, I still had a huge red rash around my neck, nothing seemed to help with that.  During this time I also developed the arthritis I mentioned earlier. 

     I finally found an OTC pain medicine to help deal with the arthritis, somehow miraculously thanks to the uncle with the hemorrhoid cream suggestion (LOL).  I was finally diagnosed with psoriasis in 2001 at the age of 23.  It wasn't until 2006, at age 27, that I was diagnosed with psoriatic arthritis. In early 2007 I was put on HUMIRA® (more on this tomorrow) to help slow down the degeneration and damage caused by the P.A., and a medicine called Salsalate, for pain.  I think I was one of the happiest people ever to finally have a diagnosis and know that even though there is no cure (as of yet) there are ways to help manage this disease.

Thursday, July 29, 2010

How it feels

     There are many sides to living with psoriasis.  The first thing that I had to do when I received my diagnosis and started learning more about this disease was to change the way I thought.  Before, I had been trying to deal with the problem and figure out how to get rid of it.  When I was forced to realize that there is no cure for psoriasis, I decided it was time to learn how to live with it instead of just fighting it.  This can be a difficult thing for some people to do, and I am no exception.
     It was not exactly thrilling to hear that my body would likely be forever covered with bright red patches of skin that often grow thick, white scales which flake off, and that these patches can occur on pretty much any region of the body.  Needless to say, I was less than amused at the thought.  This is where the emotional aspect of psoriasis comes in to play.
     Many people who live with this disease become frustrated, upset, self-conscious, develop low self-esteem, even become depressed.  We worry about what our "problem" looks like to other people.  We often concern ourselves more with what everyone is thinking when they see us, than we do with how we should be seeing ourselves.  People who know little about psoriasis really frighten us; they frequently cause us to skip social functions and even pass on job interviews/opportunities.  Too many people are afraid of the unknown and this causes them to react negatively, with or without meaning to do so.  When we see these kinds of reactions it makes us feel unwanted, useless, helpless, sometimes even hopeless.

What can you do to help ease our frustrations?
      When you see someone you think may have psoriasis, please remember that it is NOT contagious.
      Try not to make any negative or reproachful glances at the person, that will only make them feel even more self-conscious.
      If you are curious, ASK!  Personally, I would much rather that someone ask me about my psoriasis so that I can explain it to them and help them feel more comfortable being around me, than for them to give me looks of sympathy or fidget nervously in my presence.    
     Most importantly, accept us for who we are, not for something we did not ask to have.

What is Psoriasis?

If you have psoriasis then you already know the effects it can have on a person.  If you do not have psoriasis, I hope that the information you find here will help you to better understand what millions of people like myself deal with in battling this disease. 

     Psoriasis, as defined by The National Psoriasis Foundation, "is a chronic, autoimmune disease that appears on the skin. It occurs when the immune system sends out faulty signals that speed up the growth cycle of skin cells." There are five different kinds of psoriasis that can affect any area of a person's body. What everyone should know, however, is that psoriasis is not contagious in any way, no matter which of the five types a person has.

The Five Types:

1. Plaque  (most common)
This type of psoriasis causes patches of red, inflamed skin covered by white scales that tend to flake off. It most often occurs on the head, knees, elbows, or small of the back.

2.  Guttate
Often appearing in childhood, this particular type leaves small red spots on the arms, legs,and bottom. The spots are not as large and the scales not as thick as with plaque psoriasis.

3.  Inverse
Found in the folds of the skin, such as under the arms or breasts, inverse psoriasis does not usually have scales but instead leaves smooth red patches that are often irritated by sweat, clothing, or the simple rubbing of skin on skin.    
4.  Pustular
Bright red skin and blisters containing a noninfectious pus (filled with white blood cells) are the main characteristic of this type. They can be found covering one area of the body, such as the hands, or may spread to the entire body.
5.  Erythrodermic
This is the most dangerous form of psoriasis.  Due to high inflammation, increased heart rate, fluctuating body temperature, and severe pain and itching, anyone having an episode of erythrodermic psoriasis should seek immediate medical attention.  This particular type affects most of the body and the scales come off in sheets rather than flakes like most other types. 
 Please visit the National Psoriasis Foundation website at, www.psoriasis.org to learn more.