This post is coming almost 10 days late. I wish it was because I was partying so hard that I just didn’t have time to sit down and write about my 11th month of this condition, but unfortunately that’s not the case.
December 14th, I left for Toronto to see my husband and to spend Christmas with him. I was ecstatic to see him. My skin was looking way better than it had when he left 3 months ago for his work tour (Disney On Ice), and I hoped it would stay that way.
Not the case.
After the first week there, my skin really headed south. I went back to the good old days (Month 1 + 2). I started to swell immensely, burn with a vengeance, oozing, horrific sleep, loss of temperature regulation, and overall turned into a tomato.
Two days before I had to leave, I broke down at 7am, woke my husband up, and told him I would not be able to fly back home alone. He could tell the same. He and my mother looked around for flights for us both to take home, as well as flights to get him immediately back to his tour. My poor husband was on double duty, working and taking care of me.
Luckily, my mother found us flights.
The airport was the most horrific experience. I needed a wheelchair. American Airlines would not give me one until my husband checked us in. Since their self-check in machines weren’t working, he had to stand in a long line to get checked in. Did they care I was in pain? No.
Thankfully, when I did get a wheelchair, we could get through security and customs quicker than most people. I was in such rough shape and all I wanted to do was get home and go to an ER.
Saying goodbye to Jack in such a state broke my heart. All I wanted was a perfect two weeks with him, meeting his new friends, hanging out and laughing, yet I got only a few days of it. The rest were spent in bed, bath, and praying the pain would all end.
However, I would do it all over if it meant I got to see my husband again. The first two days we got to see so many sights (his two days off). We even treated ourselves to a 3 course dinner at the CN Tower. Being able to hug him and kiss him was the best feeling. I miss him so much and am so happy I got to spend Christmas with him.
When my mother picked me up from the airport, we drove back to our local ER (took about 45 mins to get there) and we had to wait a bit to be admitted. OMG… I wanted to scream, and kick, and cry, and just tear myself to bits (which I ended up doing to my neck, arms, and legs). I had to keep asking for ice packs because I felt like my upper chest and neck were boiling, yet my body was shaking profusely from how cold the ER was. Nightmare. *side note, my resting heart rate was 97 and my blood pressure was 147/58. I was told that’s normal. How on earth is that normal?!*
I was finally admitted and given a bed. They took lots of blood (painfully at one point since my arms were so swollen they couldn’t find a vein) and sent it off to the lab. My CBC and all that came back normal (though I looked anything BUT normal). My lymph nodes were the size of grapes and I was literally exhausting myself from the anxiety and the constant shaking.
All the ER could offer me was an IV to hydrate me and and a bag of benadryl (oh, and steroids…. which I politely refused). I kept asking, more than once, if I could have some pain medication. It took them forever to give me something, and then wouldn’t give me a small prescription to have some at home.
I knocked out (thankfully) for a bit at the ER, then mom took me home. So thankful she was there through all of it, giving me snacks to eat and generally coping with seeing her daughter in such a state.
It’s been a full week since I’ve been in the ER. Swelling has gone down, the burning isn’t as harsh, and I am not in nearly as much pain. On the downside, I have a nasty cold. Adds to the fun! My mother has been my caretaker and I couldn’t be more grateful.
Also, I should add, I had my first public cry in a mall. I was so embarrassed. We were with my husband’s friends, grabbing an Uber, and I was having trouble closing the van door (my fingers were hurting from the constant scratching I do and I couldn’t press the button hard enough to close the door). The driver kept calling me ‘sir’, thinking I was a boy. I finally said “I’m not a sir!” I’ve been called a boy before and brushed it off because I was by myself, but being in that situation with my husband’s friends, it just took over my anxiety. When we reached the mall, my husband knew I was upset about what the driver called me, and he said I was always beautiful to him. So… I broke down crying in his arms. I couldn’t help it. I felt overwhelmed. This condition is not only physically draining, but mentally.
The photos don’t show how red I really am, but they are a close depiction to the fun I’m having. I’m also trying to eat well to help get the healing process moving.
This is me a few days into my Toronto trip.
This is me about 8-9 days in to the trip
This was the flaking that began to occur, once again
And this is a lovely pic of me and the hubby at Christmas
Not a happy camper at the airport…
Lovely picture of what stuck to my gloves from my hands. My whole body was looking like that.
Me all wrapped trying to help with the swelling and ooze
My knees were scary. Like, I had a panic attack and malled them type of scary. All those flakes are from just my knees.
This is what I’ve got documented. Topical Steroid Withdrawal is no picnic! Please, I beg of anyone reading this, DO NOT use topical steroids (or any steroids) for a long period of time (literally, after 2 weeks of use, you can become addicted— meaning your body will become dependent on the drug and will need to withdrawal from it).
I’m hoping this flare will only last a few weeks so I can get back to taking steps forward, not going a mile back.
Love, B. R. Wren