In a land far far away roams my real body and this one is that of someone else who incased me in theirs so that they may purloin my advantageous healthy one. Irrefutably I feel like I wake in someone else’s skin on occasion and that I am trapped in this unfamiliar wrapper called skin. As if a transformation took place while I slept long ago that, I was unaware of. I have endured nineteen years with psoriasis and some days I feel like it is pulling the rug out from under me.
“Psoriasis 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. Psoriasis is not contagious. The immune system is somehow mistakenly triggered, which causes a series of events, including acceleration of skin cell growth. A normal skin cell matures and falls off the body in 28 to 30 days. A skin cell in a patient with psoriasis takes only 3 to 4 days to mature and instead of falling off (shedding), the cells pile up on the surface of the skin, forming psoriasis lesions.” -National Psoriasis Foundation/USA
I am constantly clawing away at my veneer to satisfy the insensate itch. It feels as if you are living with a poison ivy or chicken pox rash everyday of your life with the relentless insatiable itching. When your skin does not itch, it hurts. Either you have scrubbed the dead skin off leaving the skin irritated and inflamed once again or your skin has become so dry it is cracking and bleeding. I have lived with moderate psoriasis for most of my life hiding it away under clothes and slathering lotions and ointments on in hopes of a miracle. When I conclusively fought for means to receive the newer medications, the excitement was overwhelming even through the steep cost of treatment. I was jumping head first into the Biologic and Systemic medications, unaware of the imminent harm they could impend upon my body.
First, I tried Enbrel, which worked wonders, or so I thought because I had never felt or looked better in my life. Although the doctor decided, it did not give the results he wanted and with the side effects, you are allowed only a certain length of time on the medication. So then, he decided we would try going the infusion route with Remicade and Methotrexate. If you are unaware this consists of sitting in a cold medical office or infusion center for two to four hours a day, once or twice a week for months on end. While you are hooked to machines as if you have fallen ill in the hospital, until you are slowly winged off the medication showing adequate results or not. This is where my health started going down hill fast. The medication left me so fatigued and sickly with every appointment that I was unable to work and through it all, the psoriatic arthritis felt like as if it were getting worse. I missed so much work while on this medication it was embarrassing when I did show up. In the end, the good results from the Enbrel backfired with the Remicade/Methotrexate causing the moderate psoriasis I once had to go haywire and become so severe I thought I was looking death in the face. Not only did my body become completely covered in psoriasis, but now I also faced an even worrisome symptom… My legs and feet kept swelling massively; to the point, I could no longer walk or stand more than a few minutes at a time. I no longer fit into my socks and even buying bigger and wider shoes did not help. My feet were becoming gruesome looking and extremely painful. At that point, I was taken off the infusions and tested for everything the doctors could think of and everything came back normal so they started me on Humira. Needless to say after the Enbrel shots I was not looking forward to another one like it. They both burned worse than you ever thought a Tetanus shot could, I literally had to have someone else give them to me. Firstly, because I am petrified of needles secondly so I could brace myself for the pain. I would have to corner myself against the wall, hold anything I could find tightly in my fists, and clench my jaw so I did not accidentally bite my tongue. I would scream and curse the wind regularly because these injections were not given quickly so that you have nothing to get over; they were slowly released lasting ten seconds at times. It got to the point I dreaded injection days, the pain was so intense and this is from someone who was used to receiving steroid shots on a regular basis due to frequent sinus infections and having blood drawn for glucose testing every 3 months for years. I was on Humira for approximately three weeks with no results what so ever, neither improvement or worsening of the condition.
By this time, the psoriasis that now covers 95% of my body is changing. I no longer had plaque psoriasis alone, characterized by raised, inflamed, red lesions covered by silvery white scales, which is actually a buildup of dead skin cells. I now have symptoms of all types Erythrodermic, Inverse, Guttate, Pustular, and Plaque Psoriasis. I had guttate psoriasis, which appears as small, red, individual spots on the skin covering my back, chest, and stomach. Pustular psoriasis which are painful white blisters of noninfectious pus (consisting of white blood cells) surrounded by irritated red skin on the palms of my hands and soles of my feet. Erythrodermic psoriasis, which gave me fiery redness of the skin and shedding of scales in sheets, rather than smaller flakes, camouflaged my legs and arms in large patches. The reddening and shedding of the skin were accompanied with severe itching and pain, and temperature sensitivity. The lesions would be extremely hot to the touch and my body would feel like I was in the midst of hypothermia, I was freezing to my core and nothing could get me warm. I had inverse psoriasis on my armpits and other unmentionable and tender places which looked more like a rash that anything else since there were no shedding or flaking, just bright red shiny skin that was warm to the touch and as painful as a heat rash. The plaque psoriasis that I had for so many years was now covering my entire scalp, has taken over my nails, appeared in my ears, my nose, my bellybutton, elbows, knees, etc. Needless to say, I was becoming rather worried as to what extent of harm had been done to my immune system.
I remember sitting at my desk while at work one afternoon and feeling like water was dripping on my feet. When I looked down I was horrified, my feet were so swollen they were now leaking fluid. Scared to death I quickly got to the bathroom and had to examine the situation, I could not believe my eyes. I had never seen or heard of this happening in my life. Wobbling with my leviathan feet that were now literally squirting water with every step I took, I made it back to my cubicle and explained to my manager the situation. I immediately got on the phone calling my doctors and beseeching for help, but no one knew what to do. I saw three doctors which all were confounded and could not believe the turn I took after the medications. I went through two weeks of rehab and numerous tactics to remedy the situation at no avail. Hydrotherapy, ointment wraps, compression stockings, and strict bed rest later I was still contending with this anomaly. No professional knew how to treat me and I was becoming more frustrated to the point of helplessness everyday. I quickly ran out of options, money, and insurance since my job no longer saw me as a worthy employee during their layoff season. I remember wearing the uncomfortable compression stocking to the point I forgot what my legs and feet essentially looked like.
Almost two years later, I still cope with the moderate to severe diversity of my psoriasis that I unwillingly traded for. Thankfully, it has slowly mellowed out and I have learned how to counteract the swelling, which is not fully avoidable, but it no longer progresses to the extremity it once had. Lesson learned Oil of Olay got it right with their advertising slogan, “Love the skin you’re in!” I am who I am, faults and all and so be it with my skin as well. Although, I still believe the body I was actually born with is lost somewhere, like say on the “Island of Misfit Toys” as this foreign tissue all too often does not feel like my own.
“Psoriasis 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. Psoriasis is not contagious. The immune system is somehow mistakenly triggered, which causes a series of events, including acceleration of skin cell growth. A normal skin cell matures and falls off the body in 28 to 30 days. A skin cell in a patient with psoriasis takes only 3 to 4 days to mature and instead of falling off (shedding), the cells pile up on the surface of the skin, forming psoriasis lesions.” -National Psoriasis Foundation/USA
I am constantly clawing away at my veneer to satisfy the insensate itch. It feels as if you are living with a poison ivy or chicken pox rash everyday of your life with the relentless insatiable itching. When your skin does not itch, it hurts. Either you have scrubbed the dead skin off leaving the skin irritated and inflamed once again or your skin has become so dry it is cracking and bleeding. I have lived with moderate psoriasis for most of my life hiding it away under clothes and slathering lotions and ointments on in hopes of a miracle. When I conclusively fought for means to receive the newer medications, the excitement was overwhelming even through the steep cost of treatment. I was jumping head first into the Biologic and Systemic medications, unaware of the imminent harm they could impend upon my body.
First, I tried Enbrel, which worked wonders, or so I thought because I had never felt or looked better in my life. Although the doctor decided, it did not give the results he wanted and with the side effects, you are allowed only a certain length of time on the medication. So then, he decided we would try going the infusion route with Remicade and Methotrexate. If you are unaware this consists of sitting in a cold medical office or infusion center for two to four hours a day, once or twice a week for months on end. While you are hooked to machines as if you have fallen ill in the hospital, until you are slowly winged off the medication showing adequate results or not. This is where my health started going down hill fast. The medication left me so fatigued and sickly with every appointment that I was unable to work and through it all, the psoriatic arthritis felt like as if it were getting worse. I missed so much work while on this medication it was embarrassing when I did show up. In the end, the good results from the Enbrel backfired with the Remicade/Methotrexate causing the moderate psoriasis I once had to go haywire and become so severe I thought I was looking death in the face. Not only did my body become completely covered in psoriasis, but now I also faced an even worrisome symptom… My legs and feet kept swelling massively; to the point, I could no longer walk or stand more than a few minutes at a time. I no longer fit into my socks and even buying bigger and wider shoes did not help. My feet were becoming gruesome looking and extremely painful. At that point, I was taken off the infusions and tested for everything the doctors could think of and everything came back normal so they started me on Humira. Needless to say after the Enbrel shots I was not looking forward to another one like it. They both burned worse than you ever thought a Tetanus shot could, I literally had to have someone else give them to me. Firstly, because I am petrified of needles secondly so I could brace myself for the pain. I would have to corner myself against the wall, hold anything I could find tightly in my fists, and clench my jaw so I did not accidentally bite my tongue. I would scream and curse the wind regularly because these injections were not given quickly so that you have nothing to get over; they were slowly released lasting ten seconds at times. It got to the point I dreaded injection days, the pain was so intense and this is from someone who was used to receiving steroid shots on a regular basis due to frequent sinus infections and having blood drawn for glucose testing every 3 months for years. I was on Humira for approximately three weeks with no results what so ever, neither improvement or worsening of the condition.
By this time, the psoriasis that now covers 95% of my body is changing. I no longer had plaque psoriasis alone, characterized by raised, inflamed, red lesions covered by silvery white scales, which is actually a buildup of dead skin cells. I now have symptoms of all types Erythrodermic, Inverse, Guttate, Pustular, and Plaque Psoriasis. I had guttate psoriasis, which appears as small, red, individual spots on the skin covering my back, chest, and stomach. Pustular psoriasis which are painful white blisters of noninfectious pus (consisting of white blood cells) surrounded by irritated red skin on the palms of my hands and soles of my feet. Erythrodermic psoriasis, which gave me fiery redness of the skin and shedding of scales in sheets, rather than smaller flakes, camouflaged my legs and arms in large patches. The reddening and shedding of the skin were accompanied with severe itching and pain, and temperature sensitivity. The lesions would be extremely hot to the touch and my body would feel like I was in the midst of hypothermia, I was freezing to my core and nothing could get me warm. I had inverse psoriasis on my armpits and other unmentionable and tender places which looked more like a rash that anything else since there were no shedding or flaking, just bright red shiny skin that was warm to the touch and as painful as a heat rash. The plaque psoriasis that I had for so many years was now covering my entire scalp, has taken over my nails, appeared in my ears, my nose, my bellybutton, elbows, knees, etc. Needless to say, I was becoming rather worried as to what extent of harm had been done to my immune system.
I remember sitting at my desk while at work one afternoon and feeling like water was dripping on my feet. When I looked down I was horrified, my feet were so swollen they were now leaking fluid. Scared to death I quickly got to the bathroom and had to examine the situation, I could not believe my eyes. I had never seen or heard of this happening in my life. Wobbling with my leviathan feet that were now literally squirting water with every step I took, I made it back to my cubicle and explained to my manager the situation. I immediately got on the phone calling my doctors and beseeching for help, but no one knew what to do. I saw three doctors which all were confounded and could not believe the turn I took after the medications. I went through two weeks of rehab and numerous tactics to remedy the situation at no avail. Hydrotherapy, ointment wraps, compression stockings, and strict bed rest later I was still contending with this anomaly. No professional knew how to treat me and I was becoming more frustrated to the point of helplessness everyday. I quickly ran out of options, money, and insurance since my job no longer saw me as a worthy employee during their layoff season. I remember wearing the uncomfortable compression stocking to the point I forgot what my legs and feet essentially looked like.
Almost two years later, I still cope with the moderate to severe diversity of my psoriasis that I unwillingly traded for. Thankfully, it has slowly mellowed out and I have learned how to counteract the swelling, which is not fully avoidable, but it no longer progresses to the extremity it once had. Lesson learned Oil of Olay got it right with their advertising slogan, “Love the skin you’re in!” I am who I am, faults and all and so be it with my skin as well. Although, I still believe the body I was actually born with is lost somewhere, like say on the “Island of Misfit Toys” as this foreign tissue all too often does not feel like my own.
Chasity
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The Girl Under the Silver Lining