I have a severe rash covering 80% of my body.
It’s been on me on and off since I was 13 years old. It stumped the dermatologists in my small town of Meadville, Pa and they sent me off to the Cleveland Clinic, hoping to get some answers and relieve me of my pain.
When I was 13 it covered my arm pits, my face, and my neck. It appeared as hives, which turned into welts, and eventually opened up and were extremely painful and ghastly to look at.
They biopsied me, tested me for a million allergens, put me on prednisone (which made me vomit for two weeks) and finally gave up.
They sent me home and told me to spot test everything I interacted with. We eliminated anything fragranced (laundry detergent, deodorant, shampoo, perfume and lotion), found a make-up brand that didn’t make me break out (Almay), and became cognizant of bringing everything I needed every time we traveled.
Occasionally, the rash would come back for no rhyme or reason. It was usually small, and it usually was resolved with some steroid cream and a few Benadryl.
Until last year.
Last year my legs broke out. I went to the doctor and they diagnosed me with psoriasis. It was painfully horrendous all summer as it rubbed the back of my calves while I rode, and the back of my thighs when I sat. And then it got cool out, and it went away.
And I remember watching the commercials for shingles or psoriasis and thinking “Oh, c’mon. You’re that embarrassed by a little rash on your arms? It’s THAT big of a deal?”
Until this summer, when it came back with a punch.
For the last month now, I have been miserable. The itching over powers every other sense in my body. I don’t enjoy food, I can’t focus at school, and I am constantly scratching any time possible.
I get out of the shower in the morning and stare at my body as if it has betrayed me. My confidence is shot, and I’m embarrassed to be seen in almost any public outing.
My arms and legs are the worst, and yet it is July in Kentucky. With 90 degree days, I am usually forced into some form of outfit which reveals this horror. And people ask, or stare, wondering what would be wrong with me.
I jokingly call it my leprosy, but a lepar I look. And I finally have full sympathy for those paid actors in those commercials.
I feel ugly. I feel miserable. I am miserable.
But for three glorious hours of the day, I am not.
For three glorious hours of the day, I am not judged for my looks or thinking of my rash.
I cover myself from head to toe in my breeches and a long sleeve shirt, zip up my tall boots, and head to the barn.
I have three horses who demand my upmost attention. They demand that I focus on what is underneath my seat and not what is on my skin. And as I think to shift my right hip back to ask for haunches in, or my left rein back for half halt, I am completely focused on them.
No one cares if I’m covered in a rash. No one cares if I am packing on a few extra pounds. No on cares if I’m smiling or frowning, they just care that I am 100% with them and riding them to the best of my capabilities.
And for three hours, my mind is on that, and not on me.
But this week, this ended. My rash had finally covered the entire surface area of my legs which lies on my saddle, and my three hours of bliss turned into three hours of agony. My mother just happened to call me during one of these rides and caught me in tears. My escape have become just another section of my prison.
So today I head to a specialist to try (yet again) to figure this out. My mother thinks I have Celiac’s Disease, my physician still says it’s psoriasis, the doctor at UTC calls it a bad case of poison ivy, and yet I am sure I suffer from an autoimmune disease like Lyme’s or Lupus.
But I’m interested to see what these doctors have to say.
I hope to get some resolution.
I hope to get some relief.
Because I want my confidence back. And more importantly I want those 3 hours back. I have come to realize that it is ok if I have gained 15 pounds as long as it isn’t hindering my riding. It is ok if my bank account reads $2.17 as long as I have enough to pay the board. And it is ok if I am covered head to toe in a blistering rash, as long as it doesn’t put me on the sidelines.
It has also made me appreciate every individuals struggle. If you were to see me at a show, you would think I am just fine. My jacket and my breeches hide the scars, and my smile hides the pain. I complain about it to my closest friends, but only a select few know how bad it has gotten.
And that is ok. It is ok to pretend like everything is fine. It is ok to ride through the pain.
But I wanted to post this here because it is not ok for us as a society to let others believe that we are the only ones suffering. The only ones who have lost our confidence. The one ones who feel fat. The only ones who feel ugly.
I don’t feel awesome right now, but that is ok.
Because I have a team of great friends who let me vent, 3 fantastic ponies who let me ride them, and a doctor who will hopefully have some answers and provide some relief.
Wish me luck.
My ex hub suffered from psoriasis…he found relief from PUVA light therapy treatments and swimming in salt walter plus laying out in the sun. It would get worse if he was stressed. I would also check into immunotherapy drugs and a topical cream called Dovonex. I hope you find relief!
Thank you for sharing, I’ve missed you. I love reading your blog and horse adventures in KY. I am so sorry you are battling with this. I do pray you get some answers and relief. Please keep us posted.
Carleigh, I wish you all the best and hope that you and your medical team get a solid diagnosis soon. Your blog posts are always terrific, whatever your topic—and I find this one especially poignant. I hope you are back in the saddle again very soon.
Was about to come here and suggest uv therapy too- it’s the only thing that’s helped me. While I’m sure you can’t imagine anything worse, pop on a bikini and lay out in the noon sun for half an hour on each side.
Hope you get relief, even if an answer never appears. Prayers and positive thoughts heading your way.
This sounds like the issues the husband of the writer of Behind the Bit blog suffers from. You may want to contact her for insights. http://www.behindthebitblog.com/
So, sorry to read about this, Carleigh. Do you know Ouisha McKinney? She is a dear old friend of mine who rides and sells her beautiful ceramics and knits all over the country. Ouisha developed a bad rash on her legs not long ago and I THINK she has found relief after giving up gluten…Best of luck and hoping to hear you are healing soon!
So sorry to hear you are struggling with this, but I do appreciate your honesty and your positive outlook on the situation. As riders, it is ingrained in us to continue pushing through, even though we are insecure–we are taught from such a young age to slap a smile on our face even if we are scared, nervous, uncomfortable, or lacking in confidence. Life may not be perfect right now, but it’s reassuring to see that you are pushing through! I hope you do find some solid answers from the specialist and that you’re able to return to your horse activities comfortably!
Carleigh, though we’ve never met, over the last year I’ve kind of adopted you. 😉 The whole woman, skin and all. I’m so proud of you. Through your tenacity there will be relief and you’ll get those 3 hours back. And more. Gentle hugs from New Mexico.
Hoping you and your medical team can find a solution. Your honesty is admirable and best wishes for a permanent reprieve from this awful situation you are currently in…
I enjoy all of your posts and feel your pain. 95% coverage – thank god it’s not on my face or I may never leave the house again. If it is in fact psoriasis, see if they will let you try Enstilar Foam- of all the topicals I have seen the most positive comments from a wider group. I cannot take many of the drugs because they cause Congestive Heart Failure – already have that- don’t want to make it worse! I also get relief from the itching using vinegar with “the mother” as a wipe on. Hope you find some relief
I feel your pain. In the 90’s I had severe eczema on my hands, up my arms on my neck and probably othe places I have thankfully been able to forget. When it gets that bad everything sets it off. Including everything good for your skin. Picture washing my hair with gloves on hoping not to get shampoo or conditioner on my hands. Dr said skin was dry so use dove soap, which made it worse. Sweat made it worse such that I feared I was allergic to it. Eventually settled down and now I live a minimal skin life. Only low fragrance glycerin base soap, no leave in products in my hair, no make up, no moisturizer or lotions, just vasoline. I find that if I get a start of a flare up, I have to stop everything new and avoid for 6 months to settle things. I still have altered fingerprints and scars on my neck. But I am older now so it just looks like old age skin. Hope you find your path
Yup-that has been my life for almost 20 years and I have kept it manageable. But now for some reason none of those preventative measures have helped! So now have to resolve the puzzle 😦
I am sorry that you are going through this. It must be incredibly frustrating. I hope you find relief and thank you for sharing.
Hope the doctor finds the answer for you. I can only imagine how frustrated you must be. Keeping my fingers crossed that everything goes alright!
Thanks for sharing. I think people ae reluctant to share their struggles because it IS so personal, but things can’t be all sunshine and puppies all the time. I hope you are able to find some relief. Especially for those three important hours.
omg I am so sorry that you are in pain with no relief in sight. I can’t even imagine what you are going through. I read your blog and think you’ve got it all together and you do. You are beautiful. I hope the doctors can finally figure out what is wrong . I am amazed at what they don’t know..
Incredibly brave post. Love your honest approach! Hope there will be/come a solution,
Etty, The Netherlands
I am so sorry that you have this rash/itch auto immune to deal with. I do hope the doctors can help you. It is just not easy and when it takes the one thing that gives you lots of pleasure ( your horses) that is just not easy. Especially in the heat/humidity of the Kentucky summer. You have my sincere empathy and I hope they can figure this out and very soon.
Praying for nothing but the best for you. The hearts and hands you have touched are endless. I’m sure all of them hope for some answers and a swift recovery for you.
Carleigh I just saw this blog post. You’re not alone. I was diagnosed with a rare auto immune disease in 2013 (less than 15,000 people in US). You will eventually find the right Dr who will get you a working diagnosis/help. Fingers crossed you mind him soon. I don’t know you personally but if I can help at all please let me know.