I have been having a little pity party for myself this morning but I think that I am a little entitled to have a “moment” after the last few weeks I’ve had. I started texting my bestie at 7am freaking out because I stayed up all night reading about this strange and painful disorder I just found out I have. I know better than to read into the internet when it comes to health stuff but honestly, not very much was explained to me about this condition or why it happened to me. Hell honestly as of yesterday morning they still hadn’t even given me any answers or a diagnosis yet. Then by mid morning my doctor comes in and says “you have Henoch-Schonlein Purpura.” I know some of you have kinda been following along on my social media accounts so you are sort of “in the loop” as to what I am taking about, but just in case you’re not, let me back track for a minute to explain exactly whats been going on…
A few weeks ago I started having some severe stomach cramps but I wasn’t really concerned about them. I mean we all have stomach problems once in awhile, right? So I did whatever I felt best each day to help the situation whether it be popping a few Tums or taking an Antacid. Or sometimes it was just having a light or bland diet for the day. But no matter what I did, I still had a stomach ache everyday. I also noticed that my joints were starting to ache but we have a strong history of Arthritis in my family so I wasn’t surprised by these aches at all. Nothing else was really going on with my health except for a little issue with my eyes being really pink all the time but this was a totally unrelated situation. So then two weeks ago on Friday, I was at work and I was just an absolute mess. I had a mild headache right behind my eyes, I was very dizzy and my stomach was killing me. So I called my boss mid morning and told him I was leaving early to go home. I went straight home and was in bed by 3:00 and I slept until the following Saturday morning. My husband and I decided to go online and find a new place to try for breakfast and we decided on a little diner about an hour away from our house in Pensacola. After we enjoyed this little gem of a place I had found, we hopped in the jeep and started talking about how we were excited about going home “the long way” so we could cruise the beach road. And as we were driving, I looked down at my leg and I noticed 4 little bumps on the side of my right leg that looked like bug bites. I mentioned them to my husband and he told me not to scratch them and that was about it. Just a few hours later I was doubled over with stomach pain and nausea, and I had more and more bumps slowly popping up all over my lower legs. I went to bed that night and just said a nice long prayer. But I woke up the next morning my legs looked awful so we headed to the Er. We were basically told that it was probably just scabies and they sent me home with some cream to apply on it. I told the doctor that I didn’t agree with her diagnosis because scabies would not make someone have severe stomach pain and nausea as well but she still insisted it was scabies! I applied the cream even though my gut was telling me it was not scabies.
The cream used to treat scabies is an insecticide just like a bug spray and is very toxic. I should have trusted my gut and never applied that to my skin. It burned so bad that I only had it on a few hours and ended up in the shower at 2am washing it off then heading straight back to the ER. I went to the same ER that night but saw a different doctor and even after I told him everything I have just told you guys, he said he agreed with the other doctor that it was just a scabies outbreak and that I should have left the cream on. And then when I kind of started to challenge his diagnosis and give him my concerns, he basically politely told me not to be a drama queen. (Insert my SUPER PISSED OFF tone here) I could not believe what my ears were hearing. But it was doing me no good arguing with this man at 4am when I felt so horrible so we went home again. Then over the course of the next week I visited 2 other facilities in hopes that someone could help me, both just being local urgent care facilities. The first one I went to was just another big joke and then the second one I did meet a really caring doctor but she was just so unsure of what was going on that she refused to treat me and sent me on to another local Er. There, they immediately were learning towards that I had Meningitis. But that was not it either. (THANK GOD) So after 8 more hours in an ER I went home again, in pain, confused, and feeling completely helpless. I tried working over the next week and made it until Tuesday. I was wearing long sleeves and black dress pants to work instead of my usual capris or crop pants in order to try and cover all of my rash while out in public. But that was no small task too as it’s so insanely hot here in the first place, then certain fabrics make the rash itch and irritate it more so I was just a miserable mess. By last Wednesday my stomach pains were at an all time high and the nausea was just insane, so I left work early again. But this time I headed out to seek treatment from a new primary care physician that I was able to get a walk in appointment with that same afternoon. I really fell in love with the staff at this new office and the doctor seemed to actually CARE. Can you believe that? I mean she sincerely seemed to care about finding out what was wrong with me. I still felt awful but just knowing that someone was listening to my complaints and wanted to help me find some answers comforted me in so many ways. They ran the standard blood tests, urine cultures, etc… Along with some other things she just wanted to test for from anything and everything from the Zika Virus, West Nile to Shingles and Meningitis. I told her to test away as long as my insurance would cover it. She told me that she wanted to see me again in a week and we would have all my results by then. But I didn’t make it until that next week. Actually, I barely made it a few more days. That evening after I had seen her in office, my stomach pains were off the charts again but this time I could not eat, and started throwing up everywhere. And I do mean everywhere. It would come out with no warning like when toddlers projectile vomit. So you can imagine just how fun this was for my OCD and Clean freak butt! This went on for three days and my husband literally MADE me go back to the ER. Again.
But this time went magically different though. We first drove to our regular ER that we had been going to but it was so crowded that I told my husband there was no way I felt like sitting in that cold lobby full of people when I could vomit at any moment. The car ride there alone was absolute torture. But Allen had an idea to try another Er located in Destin just another 15/20 minutes away if I could make it. That’s not normally a long time but when your sick like that and in a car, it feels more like an hour, but I chose to give it a try. I swear to you, with my hand on a bible, from the minute we walked in the door there, we were treated like royalty. I don’t know if it was because we were the only people there or if it was just a heaven sent experience. But either way, I had hope again! The nurses and doctor I saw were all equally amazing. And after a few short hours there, that doctor said that he wanted me admitted. The only problem was that this hospital wasn’t a full service hospital, so they had to transfer me by ambulance to another hospital. And that hospital turned out to be Fort Walton Beach Medical Center (AKA “The Same ER that we had been going to and were told it was scabies over and over). I told that doctor about that whole experience and he assured me that he would not let anything like that happen and would have me go straight into a room, and that’s exactly what happened. Over the next few days, my bowels quit moving, I could not eat anything, I was in constant pain from not only my stomach but my legs as well. The rash I had was turning into redish purple blisters by this point and I had bubbles popping up on some of them that were full of blood. It was absolutely horrendous and one of the most terrifying things to watch happen to your body. When unexplained things happen like this to our bodies, we can usually turn to our doctors for some answers and guidance. But when I asked my doctors why my legs were doing this, they all seemed just as confused as I was!
These photos are quite gross. Sorry for the visual but I know some people will want to see it.
(Started out like this…)
(Next day looked like this!)
(And currently looks like this!)
To shorten the story, I will fast forward to yesterday. I was watching TV in my room and one doctor came in just to look at my blisters and told me he was going to start me on steroids for them. I thought that they had already done that but by this point I was like WHATEVER. He leaves and then about an hour later my main doctor comes in and tells me that she is 100% POSITIVE that I have been suffering from the Henoch-Schonlein Purpura or otherwise known as HSP. I asked her what caused it and she said there is no explanation for why people get it and the reason that they had not thought about this disorder was because normally rarely affects adults. It is more prevalent in children and young adults. So I just happen to be one of those super rare adults who happen to get it without any known reason or cause behind it. Even though I was kind of in shock and still just trying to wrap my head around the crazy name of this disorder, I did feel instant relief just have a name behind my issues. After the doctor explained the treatment plan with me she then informed me that i was going home too. And now that really excited me after being stuck in there for 5 days, and it just so happened to be my husbands 40th birthday too so I could not wait to call and tell him the news.
I got home around 5pm last night after we made a stop at the pharmacy to pick up a small arsenal of new prescriptions and then we ate a quick dinner at a Mexican restaurant just to kinda celebrate the hubbs birthday. After that, we just went home and rested all evening but I could not stop reading crap about this disorder on the internet. The basics of it don’t sound that bad unless you have kidney problems and luckily for me, my kidneys are fine. But after reading personal peoples stories on health forums about how they have had this for years and years and have never worn shorts or skirts again just made me want to crawl in a ball and scream. I live in Florida for god’s sake! That’s all we do is wear shorts and flip flops. It just made my mind race with all these questions and all of these poor peoples stories just broke my heart. But what I was starting to do, was forgetting to
just simply be GRATEFUL.
I was forgetting to be Grateful that I got help.
I was forgetting to be Grateful that I got treatment.
I was forgetting to be Grateful that I got a diagnosis.
And most importantly, I was forgetting to just simply be Grateful to be alive!
I forgot myself in those moments of panic and that’s okay. So now I have spent the rest of my morning reflecting on just what I have been through, am still going through and are going to get through. And for all of that, I am truly Grateful. I’m not gonna lie and say that I’m not scared or worried, because truth is, I’m scared shitless right now. But I know that no matter what happens, I have a great husband by my side, people who love me, a heavenly father who adores me, and a lot more life to live. And I refuse to forget that. The fact that I might not be able to wear cute crop pants or shorts and sandals during summer should be the least of my worries right now. And people are going to stare no matter what. They stare if your pretty, they stare if your ugly, they stare if your too skinny and stare if your too fat. People just love to stare. So if they catch a glimpse of this awful rash on my feet, ankles or arms, then it it is what it is. Let them stare… Because I am just going to be focused on me getting better and living my life. <3
Thank you guys for taking the time to read this extremely long and probably over explained post. And for those of you who have prayed for me, or sent me well wishes along the way, I THANK YOU form the bottom of my heart. Also, let’s all lift up those poor people in Louisiana dealing with that horrible flood, and the people in California dealing with the fires. I cannot even imagine what they are dealing with. And one more thing…
Let’s try to help remind each other whenever we may need to hear it, to just simply be Grateful.