Living with psoriasis - my story.

So, for the past three years there has been something that I have never written about or even mentioned on this blog before.  Yet, it is something that has been a big issue in my life.  It is something that has honestly, been one of the biggest challenges in my life and I've never mentioned it before.  I've been too insecure.  Too scared.  Too embarrassed.  And it's been too emotional for me to ever write about and open up about.  No, it's not my hunt for prince charming (although, real life, where is he?) but it is my struggle with the skin condition psoriasis.

For as long as I can remember, I have had dry, scaley skin on my elbows.  I never thought much of it because a lot of people have dry elbows.  Also, they are elbows and not a part of my body that I think about all that much, unless I bang it into something and then I curse my elbow for a while and go back to not thinking about them ever.  It just wasn't a big deal.

An ex-boyfriend used to tell me to use this special soap for my elbows and to exfoliate with salt in the shower - he swore up and down it would help.  He was Persian and had someone bring the soap for me from Iran and gave it to me to use with the thing of salt I bought.  I used it a few times, then continually forgot, even though it was all sitting in my shower, something I used daily.  He'd always ask how it was going and if I was using it, and I always told him exactly that... "Oh... I forgot."

Again, it just wasn't a bit deal.  It wasn't something that I was thinking about.

About three years ago in the fall of 2012 I noticed a small red scaley spot on my right shin.  It didn't particularly hurt and I didn't particularly remember bumping or scraping myself there - but it was very visible and I had no idea what it was from.  I remember taking pictures and texting them to my mom.  The hypochondriac that I am, I don't let things like that go unnoticed.  I also didn't correlate it to my elbows or anything else.

It was a little while later that I noticed another small red patch on my legs, and I also had a dry scaley patch on my eyelid - which was also very concerning to me.  Thinking back now it is hard to remember the exact order that things occurred.  I look at pictures from when I did my first sprint triathlon in August 2012 and my legs look smooth and clear in every photo (I know its too far away for you to really see, but trust me, I zoomed in to check.)

But by the fall, it was enough to see a dermatologist and begin to ask questions as to what was going on with the small spots I had noticed.

I saw my first dermatologist in Albany and was told by the doctor there that it was likely psoriasis.  Psoriasis is a skin condition that causes skin cells to grow too quickly, building up in certain locations.  It is an auto-immune disorder and I was told by my dermatologist that there really was no treatment or much to be done beyond trying a few topical creams.  There was no way to know if it would go away or spread or anything like that.  Really, not much is known about what causes it or why it would just randomly appear out of nowhere.  I didn't have a ton of comfort in the visits.  But, great, I figured. At least it had a name and I was given a prescription for some cream to try.

I remember my first prescription for the topical and picking it up at the pharmacy.  It was a giant tub of lotion and it was about $400.  This stuff better work magically, I thought. But you know what, instead, it really didn't do anything at all.

However, at the time, the spots were still small and really it wasn't a huge deal.  A little scary and frustrating to have these spots on my legs, but it wasn't uncomfortable or at all severe and didn't seem to be expanding.  Until that Christmas 2012, I was home with my mom and doing some shopping and as I changed in the dressing room my mom pointed out another spot on my back that I hadn't noticed before.  I started crying out of frustration, wondering, is this going to get even worse??

Things remained somewhat manageable throughout the beginning of 2013.  However, then the spots began to increase in size on my legs, with that original one never going away.  I started to get a few others on my hips and on my chest.  But the main ones were on my legs, and they started to get larger and I started to get more self conscious about it.

I didn't want to wear dresses or skirts and spent the spring and summer of 2013 trying to find ways to not show off my legs and hide them from cameras or what was around.  I started to search more online trying to find out more about psoriasis.  I joined websites and chat groups trying to learn what had helped or worked for other people and in general, just started to get more overwhelmed and frightened with what was happening to my body.  As well as anything I read something online.

Instead of feeling comforted, I felt more overwhelmed.  People had horror stories and crazy remedies and mostly, everyone just talked about all the things that they were trying and NONE OF IT ever making it go away.  This really scared me.  This thing was only getting worse and I wasn't really sure what was going on.  Subtle things that nobody would have noticed but you can see looking back at pictures... when I ran my first half marathon in Nashville you can see my psoriasis on my legs.  It is also the first time in my life that I ever wore a maxi dress.  Because despite my body just accomplishing the biggest feat in its life and something that I worked harder for than anything else - I was ashamed.

Family and friends started to give me suggestions - aunts and uncles - telling me that they had experiences with psoriasis too.  And that sunlight helped.  Or that it would go away when they were on vacation.  Everyone kept telling me that they had psoriasis "flare ups" as well, but the thing with mine was that it never went away.  Only expanded.  When was I going to "flare down?"  Nothing that seemed to have any luck for others I knew, or their experiences, seemed to relate to me at all.  I connected more with the sad people on the internet chat rooms wondering if ANYTHING would ever work.

Another friend of mine brought back a tiny vial of a psoriasis medicine that she had been given when she was traveling in Indonesia.  This tiny bit of lotion was the only thing that cleared my skin up - only when paired with another technique I'd read online of wrapping the affected area in Saran Wrap overnight.  So literally, every night I would go through the routine of applying the lotion and then wrapping Saran Wrap around both my calves before going to sleep.  Whatever worked though.

Then, once the lotion was done, the psoriasis returned in the exact same locations.  At this point I had tried a number of topical medications -- I was still seeing dermatologists in Albany and trying various prescription topical lotions, as well as over the counter ones I read about and nothing ever did anything besides cost me hundreds and hundreds of dollars.  And to this day, that weird Indonesian stuff is the only thing that has cleared my skin, even just temporarily.

I sort of got it in my mind somewhere during the summer of 2013 that maybe the psoriasis could be related to gluten.  Psoriasis is a genetic auto-immune disorder, yet neither of my parents experienced it.  However, a different auto-immune disorder runs in my family as my sister has had Celiac disease, making her intolerant of gluten.  Neither of our parents have any problems with gluten either.  So, in my head, I thought maybe they were related and that the psoriasis was my body reacting to, and fighting off, the gluten I was consuming.  It didn't account for why it just appeared out of nowhere at the age of 26, but still, made sense in my head.  I decided to try and go gluten free.  Unfortunately, it didn't make enough sense in my head to last forever and after about two weeks and being faced with some pasta, I caved.

So, I just wore that maxi dress all over the place that spring and summer.  But the psoriasis was still there.  You can see it on my legs and even all over my face around my hair line in these pictures from the 2013 Fronhofer's Sprint Triathlon.

The psoriasis on my face and on my hair line was really hard.  My earlobes were scaled and bloody most of the time.  My forehead, hairline, nose, eyelids, and scalp were all covered as well.  I stopped wearing black because the psoriasis was essentially looking like dandruff on all of my clothing. My hair dresser told me my hair was thinning due to it and gave (sold) me shampoo to try.

I obsessed over pictures.  I cringed at the sight of my psoriasis on my legs.  And I began to invest heavily in makeup.   I have never been a makeup wearer.  I have been fortunate and blessed my whole life to have very clear skin.  I get occasional pimples but never had challenges with acne or other skin problems throughout adolescence.  In fact, my skin was always the ONE thing I prided in myself.  Through with all of my struggles with my weight and self confidence issues.  Even when I was never the skinniest, or the curviest, or had the best hair anything like that. I always had naturally clear, smooth, soft skin and rosy cheeks.  I never wore makeup beyond eyeliner and mascara for the most part.  Nor did I have any interest.

Yet I started to spend hours at Macy's and Sephora consulting with the different makeup brands and styles and trying different things out with the makeup artists there.  I ended up purchasing Kat Von D tattoo coverup as makeup to use on my legs and face to cover up the red patches.  I was also given a powder to seal it in, but later learned that this powder cause incredible glare and reflection in photos so stopped using that.  I know these pictures aren't the best but you can see the glare from where I have the makeup on in the pictures below, on my cheeks and shin of my legs.

I invested a lot in maxi dresses and many pictures from this point on, I am always in a long dress.  "Trauma" or nicks/cuts/wounds can be a catalyst for psoriasis, so any nicks or cuts on my legs from shaving turned into bigger spots.  I started to look into laser hair removal to see if that would be an option for me so I wouldn't have to shave anymore or worry about that.

The irony of it all was so hard on me.  The fact that my skin, had been my one thing I felt happy with in myself, throughout years of being unhappy with my weight -- was now falling apart of me, just in the years that I had gotten my weight under control.

In December 2013 things really got our of control.  In early December, as I just started training for the Paris Marathon, I came down with strep throat.  And wouldn't you know it, strep throat is another catalyst, or instigator, for psoriasis.

In mid-December 2013, the psoriasis pretty much completely covered my body.  My entire back, stomach, and chest became covered with red psoriasis spots.  My strep throat cleared, but the flare up remained, as well as the spots that had been covering my legs for over a year at this point and never gone away.

I became incredibly unhappy at this point.  I was depressed and desperate for a remedy to the situation with my skin.  I would wrap my ENTIRE body in saran wrap before going to bed at night.  My calves, thighs, arms, etc. -- as much as I could cover until I was a clingy, cocooned mummy.  I remember sleeping over at my friend KO's on New Years Eve and her and I buzzed off of champagne and a night of No Pudge Brownies, giggling as she helping me wrap my whole body up in the saran wrap before going to bed.

I was running a lot and showering in the locker room at work.  I was embarrassed for people to see my skin this way even if they were just other females.  And as for dating?  I completely lost interest in attempting to date because the thought of getting closer with someone and them seeing my skin like this, was too much.  I was so self conscious of this red, scaley, flakey grossness that had taken over on my formerly smooth, clear skin.

My trips to the dermatologist increased as well as the amount of money that I was spending on treatments.  Also, as of January 1, 2014, I decided to go back again and try the gluten free potential solution.  I was willing to give ANYTHING a try at this point.  I went completely gluten free and also scheduled an appointment with a doctor to get tested for Celiac disease to see if my personal hypothesis worked.  The test came back negative but I continued a gluten free diet for two months in January and February of last year to see if it had any impact on my skin.

It did not.

I tried other home remedies and over-the-counter solutions I read about or was recommended.  I tried eating organic foods.  I cut soda.  I tried black tar soap.  I tried witch hazel.  Tea tree oil.  All natural products.  I tried mineral water baths.  I found a lotion at the Detroit Airport that I was convinced was helping and called them up and had them ship me a case to continue to use it.  None of it worked.  Nor did the doctor prescribed solutions such as UV light treatments therapy I began trying at another dermatologists office 2x a week.  Nor did the many prescription topical lotions I paid hundreds and hundreds of dollars for by doctors.

I also tried a heavier dose of a topical type medication from the doctors that actually was in a spray format.  It was so strong I was not allowed to rub it in with my hands and had to let it dry on me and then wash my hands anyways.  I had to be so careful about getting in my eyes and only spraying a small amount on my skin.  This treatment actually did have a bit of an effect and began to clear my skin, but one of the side effects of clearing up the red patches was having very, very thin dry skin everywhere else and my skin and hands would crack, cut, and hurt painfully.  I just could not handle that on my hands and everywhere else so I stopped that medication.

I started to see different doctors to explore options beyond the light treatments and topical lotions - more intense treatments like injectibles and methodextrate, a mild form of chemotherapy.  The dermatologist I had been seeing did not prescribe those types of treatments so I needed to see a third dermatologist in Albany.  I cried a lot in doctors offices and elsewhere trying to figure out what I should do about my skin.  And beyond that, psoriasis can often lead to arthritis and rheumatoid arthritis so many of the doctors asked me about my joints - were my knees hurting me?  And my answer, well, yes, at times. But I am training for a marathon, I always attributed any pain to that!  I began to become concerned that the problem was spreading beyond just my skin.

I continued to avoid dating.  And as soon as I found out that winter that the bridesmaid dress for my friend's wedding in August was going to be a short dress, I stressed about what I would do and how I would look terrible in the photos with red patches all over my legs and back.

When I was in Paris for the marathon with Jess, I remember one night talking with her and she showed me the Dermablend makeup campaign "Camo Confessions" where women revealed their skin challenges that they hid behind makeup and were ashamed of.  We talked about if I should write about my psoriasis on my blog.  And I said no.  Not now.

You can see it on my legs clearly in my marathon finisher pic and as I lay on the wall with my legs in the air after the race back at our AirBnB place. [Side note: this day, is still one of the happiest most amazing days of my life.  I cannot think about April 6, 2014 without getting emotional or teary eyed or without a huge smile.  This picture is pure emotion, despite psoriasis or not]

Anyways, me not writing about psoriasis on the blog is a scenario where the blog is not always "real life" as every one of my close family and friends in the real world knew about the issues I was having with psoriasis as it was a major challenge in my life.  I wasn't ready yet to share it with the broader world and still avoided pictures showing my psoriasis.  I was ashamed, embarrassed, self conscious, and partially probably in denial.  I continued to just avoid showing pictures or ever talking about the subject.  It made me depressed and unhappy to think about and this blog has always been a mostly positive space for me.  I was mostly just scared though.

In about July of 2014, I finally felt like it was time to try the injectable medications.  I was not living the life that I should because of the psoriasis.  Every time I got dressed or went to bed I thought of it.  My month in Europe was horrible for my skin.  I don't know if it was the water or something but I was itchy, uncomfortable and in pain.  And no, for the most part it is not a super painful thing. However, it is dry and it itches and cracks and burns and stings and can be extremely uncomfortable and at times painful.  I also, really wanted to have clear skin for my friend's wedding in August.

So I saw more doctors, but at the same time I was finalizing accepting a new job and moving to Atlanta so, unfortunately, I didn't have enough time nor did it make sense to start the treatments at that time.  Injectable medications are given via shots.  Shots that you have to give to yourself.  And are also the medications that you see the ads for on TV or in magazines with two full pages of fine print detailing the side effects and potential damages it can be causing elsewhere in your body to try.

And one of the other dynamics at play for me throughout this whole time - was guilt.  Guilt that I was so upset, challenged, and held so much anger about psoriasis.  In the grand scheme of things - it is unappealing to the eyes and it is uncomfortable to me.  That's it though.  It is not life threatening, it does not, physically, handicap me from doing the things I wanted to do, and it was not majorly debilitating.  I first, appreciated that SO MUCH.  Things could be SO MUCH worse for me if it were a different type of disease I were dealing with.  I know that and I am thankful for my health every day.  I felt guilt for having such a hard time with this, on top of the other things.

My friend's wedding came and I covered my legs in makeup.  I cried the morning of the wedding trying to cover up my skin as best as possible and getting frustrated.  I didn't want to be dealing with this on a beautiful, happy day for my friend.  However, it turned out okay.  And following the wedding, things changed a bit as well when I started dating someone that August.

It was the first person I had let myself get close to since my skin problems had become major.  In fact, I specifically remember one of the turning points in me falling for him was when over Google Chat (we were long distance) I told him about my shame and embarrassment and fear over my skin and how I was afraid of what his reaction would be to seeing the grossness of it.  I cried at my desk at work as he said all of the right things to put my mind at ease.  It was a really big moment for me.

With more support, as I moved to Atlanta, one of the first things I did was find a dermatologist here.  I loved the new doctor I was seeing.  She made me feel comfortable, like I had options, and like I would be okay.  She recommended I try the injectables and I was ready for it, beginning that process to submit them to the insurance companies.  It was a huge mental step for me to say yes as it was something I was avoiding for about 2 years at that point.

The next few months were spent with my skin remaining the same... painful at times, itchy, dry, and covered in red, scaley patches.  But I also had to deal with fighting with insurance companies.  My dermatologist and I in Atlanta had reviewed the pros and cons of a number of the different types of medications and decided upon the best route forward.  The injectables are a very expensive medication to prescribe, and when it went through the insurance agency, I was denied coverage by my insurance company for the medication I wanted to try.  I now know that this is common for many people but I was livid.  How dare some random person at a desk, who knows nothing of me or my condition, have ANY say in how I treat it?  The insurance company said that they would not approve the medication my doctor and I wanted me on until I had tried one other different (cheaper) type of injectable medication.  Since I had tried topicals, light treatment, and various other options previously they would approve this other type of injectable, that actually required more shots to be given to ones self than the one we had originally selected.

There was a lot more tears and anger and frustration through the months of figuring it out with the doctors and insurance company and finally in January 2015 I was approved to begin treatment.

However, over the month of December 2014, something really incredible happened and my skin started to clear up a bit.  I don't know why or how, but I was using witch hazel and taking a nightly bath of at least 15 minutes in epsom salt.  Yes, every night a bath, where I would try to soak my whole body in the epsom salt water.  This was another treatment I had read about online and wanted to try.

I'm not sure what it was but by mid-January when the first shots arrived in the mail, my skin was in better shape than it had been in years.

I felt a bit confused wondering what to do - I had gone so far to get to the point of having these shots in my hand to treat myself and didn't know if I should wait out whatever was happening or go for it.  I decided to go for it (with doctor discussion, of course) and from January to March I began giving myself shots with the hope of clearing my skin further.

And whether it was the injectable or the combination of whatever I was doing before, my skin stayed clear for a bit.  It was amazing and wonderful.  My legs still had outlines of where the major spots had been, but it was clear.  I felt so good about it.  I was thrilled.  Here is a picture of me, happy and carefree in Nigeria, learning how to do some of the traditional Nigerian dances.

Anyways, the happiness and clear skin was short lived as it was less than a month after that when everything came back.  I must say though, I was incredibly thankful to have had the clear skin during runcation.  I don't know if I would have even gotten into a bathing suit with so many people I did not know well if my skin looked like it does today.  I told you recently I would show you a pic of my tanline?  Well, I never posted because I realized my towel was not pulled up enough to cover where the psoriasis on my back begins.  Besides that, I actually thought I'd looked pretty cute.

And honestly, I think that exercise makes it worse.  I don't think that sweaty sports bras and tight damp clothing that sticks to my body is good for it.  It was the worst it has been during marathon training and cleared up when my exercise schedule was slower, then built back up as I began exercising more.  I do see a pattern, more than anything else, in the severity in relation to my exercise routines.  However, if exercise is a catalyst... I am just going to have to learn to live with this even further.

My skin, right now, is pretty bad.  In coverage, severity, and comfort.  However, without getting into detail, I will say that the majority of the spots I have now are not in parts of my body that you see every day (my chest, upper legs, stomach, hips, and butt.)  It is gross.  It is gross to have your skin fall off everywhere.  It hurts to have your skin crack and be brittle.  It is embarrassing to notice people's eyes dart down to your legs or elbows whether or not they say anything.  And it is exhausting to have to explain over and over when people ask, "What happened to your elbows??  Did you scrape your legs?  Fall off your bike?"

Nope.  This is just my skin.

And frankly, I'm exhausted with it all.  I'm exhausted by covering everything up with makeup.  I'm exhausted by caring.  I'm exhausted by researching and trying new solutions.  I HATE my psoriasis so much.  But I don't know what to do.  I don't know what to do anymore at all.

And truthfully, I'm not sure what changed and made me want to post about this now.  I am not sure what brought me over the edge.  Maybe it was those couple months when I felt the weight had been lifted off of me and my skin was clear.  Maybe it was the experience of dating someone who accepted me and didn't see my skin as gross as I saw it on myself and truly only cared if I was comfortable in my own skin (pun intended, and also, we since broke up but it was still a positive experience for that and other reasons.)  Maybe I am just getting older.

But somehow over the past week I was inspired to write this post.  I've been working on it for the past few nights and drafting more of it in my mind as the days have gone on.  It's actually felt good to get it typed up and written.  A relief in a way.  I don't have the weight of the psoriasis off my chest (pun intended) but at least the weight of the shame and the secrets I would like to move on from.  I want to be in the clear (so many puns.)  I don't want to have to sensor pictures.  Although, truthfully, I've gotten pretty good at knowing how to configure my body, which side to stand on in pictures, and how to cross/cover my legs to hide my psoriasis.

Either way.  Cat's outta the bag.  I have psoriasis.  I hate it.  I have tried most all things I can think of.  Maybe I will go back to the injectables again.  Or maybe I will spend more time in the bathtub, although that's a lot less appealing in the summer.  But whatever I do - I will try and share more about it here.  I hope that with a lot of what I write, I just find someone out there, whether its someone I know and who is feeling the same way about something - or someone I don't know - I just hope to connect with people.  And maybe by sharing my story with psoriasis it will help someone else feel a little better about something going on with them.

And as I mentioned - I am thankful for my health every day.  For my ability to exercise, feel strong, take care of myself, and do things that make me happy.  I am proud of my body on a near daily basis.  I know in the grand scheme of diseases and where they rank on the severity/life-inhibiting scale, I'm way down at the bottom.  I know that.  But this has also been an incredibly scary process for me.  I didn't understand (and don't) why now?  How did this just happen?  How is this not an indicator of something more severe going on in my body?  Why can't anyone give me an explanation why this was not an issue one day and then just became an issue the next?

That, more than anything scares me.  The fact that diseases and changes in your body can appear seemingly overnight.  That doctors can be unable to find a solution or give satisfying responses.  That treatments can not work.  That your body can fight against you and attack you, rather than all being a part of the same team.  This has all scared the crap out of me over the past years and been a big lesson for me.  My main reason for writing this post is really to just get it off my chest and not have it be "a thing" anymore.  I recently read an amazing book called Daring Greatly by Brene Brown and it talks about the feelings of vulnerability and also of shame.  One of the things she says about shame is that it cannot survive being spoken.  Shame is made up of fear that we are not worthy or not enough or not capable.  But when you speak of shame, it cannot own or control you any more.  So here is me speaking.  And to hopefully letting go of some of that shame.

In typical fashion I haven't edited all of this, but it is getting late and I am trying to get better at going to bed on time so I am going to just click "Publish" and dart away.  Thank you for reading and being a part of my community, virtual or real life.  I appreciate all of you for taking time out of your days to read the words I type into sentences and share with you here.  It means a lot even if I don't even know you're there.  Thank you.

Happy Thursday everyone!