Deciding that I am me, not the disease…

DISCLAIMER:  YOU MAY FIND THIS POST KIND OF GROSS, BUT THIS IS WHAT LIVING WITH PSORIASIS IS LIKE.

When I was in elementary school, I got the chicken pox.  Like most kids with the chicken pox, I scratched and scratched (even though Mom kept telling me to stop). I didn’t have a bad case of them, I had a few on my face, I’m not sure how many on my body and extremities, but I had a lot in my scalp.  If I could have had a favorite place to have chicken pox, it was my scalp.  I could scratch them and Mom wouldn’t know because she couldn’t see them.  So I would scratch them relentlessly.  It did not occur to me that even after all of my other sores were healed, I still had sores in my scalp.  I was a kid after all. Eventually, most of the sores in my scalp did heal, but I still had some years later.  The ones I had years later were different, but in the same places where they started.  These would just peel and flake skin, kind of like dandruff, but bigger flakes.

In high school, I still had these sores, and I could not keep my hands out of my scalp, of course, in public I did the best I could.  I suppose this had become a habit for me over the years, I don’t know, but what a gross habit. Other than my mother, I have never really shared this part with anyone, so this is kind of hard for me, but I want to be completely honest with you, because there are people out there that completely understand.  I never thought about these sores being anything other than just sores.  I didn’t go to the doctor about them, because I didn’t tell anyone about them.  Let’s fast forward to 1998.

In 1998, I had just had my most precious of blessings, Megan Paige!  What a joy she was!  She was beautiful, healthy, and the absolute most perfect gift that God could have given me!  In the fall of 1998, I noticed a little red spot on the side of my wrist.  This little spot would itch and peel, just like the sores in my scalp (although, honestly, I didn’t put the two together until years later). I went to my regular doctor because at that time, our health insurance company required a referral to go to a dermatologist.  My doctor said it was nothing to worry about, so I let it go, all the while it kept itching and itching, and soon started spreading.

Almost a year later, our insurance had changed and we no longer had to get a referral to go to a specialist, so I went to a dermatologist.  The dermatologist looked at it and told me it was psoriasis.  What is psoriasis?  Psoriasis or PsA, is an autoimmune disease where the body tries to fight the largest organ in the body, the skin.  The “fighter” cells, the white cells in the bloodstream go to the place of an injury (in this case, the skin) and try to fight the foreign object.  To do this, the blood vessels carrying these fighter cells move closer to the skin and since there is no real injury, the cells just pile up on top of one another.  These places are called plaques.  When these plaques are scratched, the skin bleeds, because the blood vessels are right under the skin so the cells can “heal” the injury.  This is just a never ending cycle of  fighting, scratching, and bleeding.  This also causes flakes, like dandruff, although it is on your skin not in your scalp.

The doctor prescribed all types of ointments and creams that didn’t work.  I went from doctor to doctor and no one could help me.  By this time, it had spread all over my arms and legs.  One of my doctors prescribed a UVB lamp for me to have at my house.  This is similar to a tanning bed but a tanning bed uses UVA light bulbs. Mine was a wall of lights that I would stand in front of.  I am red haired with very fair skin and I burn very easily, so I was to start out at 7 seconds on each side of my body.  7 SECONDS!  I thought, what will that do I mean 7 seconds is nothing!

Let me just tell what 7 measly seconds did to my skin.  My skin fried!  I might as well have laid on the beach naked for hours with no sunscreen!  I was in so much pain, I decided to put solarcaine on my back, it’s for burns after all, and it had lidocaine in it which should numb the skin… right?  NO!  I WAS ALLERGIC TO LIDOCAINE!  That night was one of the most miserable of my life!  I called the emergency room to see if there was anything they could do, but they said no, so I paced the floor crying all night long!  As soon as the dermatologist’s office opened, I called them and they told me to come in.  The dermatologist looked at me and honestly told me he was clueless as to how to help me other than treating the burn.  He then told me that he had no idea how to help me.  The psoriasis had covered any place that had a burn, so my entire backside was covered… yes, even my hiney… He asked me if I would be willing to go to a doctor in Dallas, Texas.  He said “he is the psoriasis guru.” I think at that point, I would have gone to Mars to get help, so I said yes and he made me an appointment.  I could not wait to get to this “guru”.

THE “GURU” OF PSORIASIS:

I went to this doctor in Dallas, so hopeful, but a bit skeptical.  I was in so much pain, you see, psoriasis not only itches, but at times, develops fever in the plaques.  This doctor came into the room where I was sitting in a little paper gown, and within 2 minutes says, “you are photosensitive” (meaning I’m allergic to the sun, and light in general).  He picked up my arm and the underneath side of my arm was just as white and perfect as it could be.  There were no plaques.  He showed me how where the light or sun touched my skin that it was broken out in plaques, but the parts of my body that didn’t catch that light were perfect.

When this man touched my arm, I felt the touch of God!  I don’t know how else to describe it, other than to say, where his hand touched my skin, it seemed to melt into his hand. It was such a comfort and all the pain in that area was gone.  No, he did not heal my arm where he touched it, but while his hand was on there, the pain was gone and it felt amazing!  I knew in that instant that God was in that room!  Yes, I believe that God is everywhere, but I truly felt the Divine Healer in that room! I immediately knew that God had sent me to this man.

The doctor prescribed more ointments and some steroids.  I got better quickly, but still had some psoriasis, and the side effects of the steroids were horrible!  More and more advancements were coming up through the FDA, and come to find out, my doctor “the guru” was the one over all of the testing and drug trials.  He asked me if I would give blood so that they might could find a pattern in my DNA and other patients’ DNA so they could further the research, so I agreed to do that… anything to help find a cure!  At that time, he asked me a whole bunch of questions, and I realized during those questions, that I had psoriasis in my scalp all through my childhood and high school, all because of the chicken pox!  That revelation was like a light bulb going off in my head!  I still use this doctor to this day!  I love him in a doctor/patient way, I truly believe that he was put in my life by God!  Over the years, my PsA has come and gone depending on the stress level in my life, or the meds I am on, etc.

WHEN I DECIDED I WAS JUST ME AND NOT THIS DISEASE:

Over the years, I have had random strangers come up to me and ask me questions about my skin.  The ones that I can tell are sincere, I do not mind answering, but those that ask ignorant questions, or I can tell they are judging me because of my skin, irritate me. One time someone came up to me and asked “OH MY GAH!  WHAT DID YOU GET INTO?”  I literally told that person I was a leper and very contagious, and that she needed to get back or I would touch her and she would break out like this too.  HAHA  I was not in a good mood that day (needless to say).  When children stare or ask me, I do my best to explain it, because a child is sincerely asking.

I went through a time, where I would keep all of my skin covered up so no one would see anything, or so that I would not leave my “dandruff” behind on a chair.  Then one day I decided that I didn’t care anymore.  I was me and I was going to dress like I wanted to, whether it be in shorts or long pants, a dress, or leggings, it was my choice, not the public’s choice!  I was no longer going to be considered the lady with the skin problems, but I was going to be Sara Beth Wesson Malone! I had been driving myself crazy about what others were going to say about my skin, and I was allowing them to only look skin deep, and not look at me… at my heart, and my soul, and that was over!  I wanted people to see ME not my skin!

Don’t get me wrong, it has not always worked out like that for me… once when my mother in law and my sister in law, at the time, were looking at massage chairs, I sat in one, and of course it was a black chair.  The salesman pushed the buttons on the remote laying me back so I could experience the head massager as well, no big deal, until I got up and I left some dandruff on the chair, and my then sister in law, said “eeewww!  what is all of that?” I was devastated!  This was someone who was supposed to be one of my supporters, and she embarrassed me!

Another time, I had gone to the nail shop I had previously used for a while, and I asked for a pedicure and I was told “no.  You cannot have pedicure, you have bad skin.”  Instead of trying to explain my skin, or take up for myself, I just sat there and allowed them to do my nails.  I paid them and even tipped them!  I was so taken back by the audacity that I was literally stunned into silence.  When I left there I was bound and and determined that THAT would never happen to me again!

Psoriasis is no joke!  It is painful, physically and emotionally, but my God has always been my place of comfort!  Just like in the “guru’s” office, I knew HE was there with me, and I feel HIM carrying me on a daily basis!  He works everything out in HIS timing and in the HIS way.  I still have weak times, and true enough that I don’t want this disease, but Jesus Christ didn’t want to be beaten and hung on a cross for my sins, but He did because He loves me. For this reason, I want to use my experiences with psoriasis to further HIS kingdom!

IF YOU SUFFER FROM A SKIN ISSUE SUCH AS PSORIASIS, PLEASE CONTACT ME SO THAT I CAN PRAY FOR YOU!  ALSO, PLEASE KNOW AND UNDERSTAND THAT THE GREAT PHYSICIAN, MY FATHER GOD IS SO MUCH BIGGER THAN THIS DISEASE!  HE WANTS YOU TO COME TO HIM AND SIMPLY ASK FOR HIS HELP.  HE WANTS TO HELP YOU THROUGH THE HARD TIMES OF THIS WORLD! HE WANTS TO BE YOUR HEAVENLY FATHER, IF HE IS NOT, PLEASE CONTACT ME OR LOOK UNDER THE HOW TO BECOME ROYALTY SECTION.  IT GIVES YOU STEP BY STEP DIRECTIONS TO BECOMING A CHILD OF GOD.  

THANKS FOR READING… SORRY IF I RAMBLED ON AND ON… LOL