“I have to be dying”, I said earnestly to my husband for the second time that year, “at the very least, I don’t think there is much more pain I can actually tolerate before literally needing to be sedated.”

The first time that year was due to a sudden and severe battle with C-diff and nearly evading an emergency surgery for toxic mega colon from complications of severe ulcerative colitis. This time however, I could genuinely say that out of everything I have ever experienced, from gallstones to pancreatitis, endometriosis and massive ovarian cysts, juvenile rheumatoid arthritis and extreme liver inflammation and kidney infections, this one, this pain was undoubtedly worse.

Early into the fall I started noticing some weird bumps across my body, they looked like clusters of whitehead pimples, only when they popped it shot burning hot pain through the surrounding areas and left a cavern into my deeper tissues. What started as just a few fluid-filled bumps on my hand quickly turned into coin sized clusters covering nearly every inch of my back. I spent every day googling images of different skin diseases from monkey pox to measles and yes even leprosy.  My google history at that point would make nearly everyone a bit squeamish. LOL. I talked to my doctors, saw specialists and even had biopsies taken on two separate occasions.

After a month of no answers and the mystery disease rapidly covering my body, I was in absolute misery, and desperate for relief. I switched from shorts and t-shirts to sweatpants and long sleeves. I tried just about every kind of medicated and regular lotion, creams and ointments I could get my hands on. The doctors were bewildered, each one investigating another dead-end diagnosis before sending me on to another person. To be fair, these are some incredible doctors who I trust my life with, however we couldn’t find an answer.

In a desperate attempt to put into words the extreme anguish I was in I wrote down how I could best describe the sensations I was feeling.

Imagine you are camping and spent the day at a sandy ocean beach, but you didn’t get a chance to rinse off afterwards. You are still covered in moist sand but you’ve somehow wiggled back into your day clothes fully feeling every little speck of salt and sand as it dries and scrapes against your skin. You’ve shaken off as much as you could with a towel but yet there is a never-ending number of granules of sharp sand following you around. You swear someone is following you around shaking sand onto you when you aren’t looking. To make matters worse you have a nice deep red sunburn from the day that has made your skin feel impossibly tight and oh so dry. Every tiny movement you make feels like your skin is being ripped apart cell by cell. You somehow manage to climb into your sleeping bag only to be rubbed raw by the maddening amount of sand that appears to be spontaneously forming under your clothes. It doesn’t matter how many times you get up and shake out the blankets, every time you climb back in they quickly fill up with sand again. It itches, it burns, it’s sharp and scrapes in some areas. You’re constantly lathering on lotion because the “sunburnt” skin feels like it is being stretched tighter in every direction with each passing moment. The specks multiply by the hundreds to the point you choose to cover yourself up with tight fitting clothes simply to keep from shedding sand particles on others. The sores producing the sand are paper thin and ooze with the slightest touch. You find solace in the fact that you would be a kidnapper’s worst nightmare because no amount of cleaning could ever quite remove all your DNA.

When my skin is not oozing in fluid-filled bumps or flaking off in sand like granules leaving behind paper thin crepe-like skin, it feels like a hundred tiny needles poking through from the inside. Sharp hot stabs of pain riddle my body just below the surface. It often leaves my imagination feeling like there is hot lava rolling through my veins trying to find its way out through every pore. Sometimes the pain is worse within 12-24 hours of a new patch of sores appearing.

Your scalp has the worst case of dandruff you’ve ever experienced and has perfected the art of growing a scab helmet at a daily rate. It itches, and hurts, your head “needs to breathe” but every flake you remove triggers the skin to grow more. How do you make it stop? Your hair falls out, it stinks from secondary infections and end up shaving the rest of the hair off so that you can attack the disease up close and personal. The horror you feel upon shaving is not from the loss of your hair, but rather from seeing point blank just how severely the sores have attacked your scalp and left you with nothing but a scab covered oozing scalp. For the first time in my life I was certain that I felt as horrific as I looked.

You lather in a long sudsy shower carefully combing out every crumb, then once you’re dried up you cover that clean hair in copious amounts of oil to rehydrate and slow down the release of shed. Within an hour no one would guess that you just thoroughly excavated your hair follicles mere minutes before. Armed with a broom, mop, squeegee and vacuum you try to contain what can only be described as the sand that was apparently grown by your skin earlier that day. You welcome your vivid dreams and even nightmare filled sleep each night for the release of pain and pray that tomorrow, tomorrow will be better. Your final thought of consciousness each night is, how much worse can this get until I die?

I was constantly searching for that current moment’s solution:

• Lotion? Ointment? Coconut oil?
• Combing, Itching, Shower?
• Baggy clothes? Compression shirts? Bare skin?
• Long sleeves, tank tops, bandana?
• Sunshine? Ice? Heating pad?
• Pain meds, allergy meds, water, or caffeine?
• Sleep through it or shake it all loose and try to distract myself?

These lesions that I just described are what we finally diagnosed as Generalized Pustular Psoriasis (GPP), which if you ask me is the worst imaginable form of torture of the full body and soul. We believe that a medication we were using to treat the Ulcerative Colitis is what triggered such a severe flare of GPP. It took me roughly two and a half months, six medicated ointments, two skin biopsies, a rheumatologist, pharmacist, primary care, gastroenterologist, allergist, nurse practitioner, dermatologist, reddit, google, Facebook, and a whole lot of will power to come to a diagnosis and further successful treatment. I am one of the lucky ones diagnosed with GPP because I already had an arsenal of medical knowledge and medical professionals at my disposal due to my pre-existing chronic illnesses. For many of my fellow GPP patients however, diagnosis can sometimes take years of suffering.

My diagnosis journey went something like this: severe ulcerative colitis. Medication infusions to treat colitis ironically triggered a severe 80% coverage excruciating psoriasis rash. Stopped medication, called insurance and specialty pharmacy. 2.5 months of near daily doctor appointments, two skin biopsies, 6 medicated creams, A central-line placement. Waiting for medication, Allergic reaction to surgical glue, infection, antibiotics. Skin cracking apart, ripping apart? Coconut oil, aquafer, Vaseline. shea butter. Waiting for medication.  Stubbornly avoiding hospitalization, daily scab helmet, hair loss. Dog bite. Shaved head. Pain. Misery. Am I dying? So much pain. Waiting for medication. Colitis flare. Zero appetite. Weight loss. Blood loss. PCP once again sees my misery and makes things happen. Magical prednisone. Temporary Relief. Medication finally arrived after a month of arguing with insurance. Sweet relief. Prednisone anxiety, nightmares, insomnia and jitters. Skin clearing up. 2 weeks into medication, prednisone stopped. Finally, no new sores!! Coarse damaged baby hairs closely resemble that of a baby bird before it gets feathers LOL. Appetite is minimal. Tastebuds hungry but stomach is rebelling. Using protein drinks to maintain nutrients. More pharmacy issues. Seventh abdominal nerve block? Migraines. Covid. 103 fever.  Increased sound and light sensitivities. Crochet, crochet, plants and more crochet….. 👀👀 and yes, that was the fast version.

Eventually I started on a new medication that improved both the GPP and the Ulcerative Colitis significantly. Now two years later, I still watch constantly for the signs and triggers of GPP amongst my other ailments. I can honestly say nothing else quite fills me with dread the same as finding a stray pustule popping up.

I am so worn out from dealing with this, of all the ailments and diseases I’ve experienced in my life so far, this is definitely the most mentally challenging one. I often await sleep excitedly simply for the escape of the pain and constant excruciating awareness of nerves across my body. Obviously, I cannot just sleep through life, so I am adjusting as always to understand what actions and chores I can do with minimal pain. I’m also continually using myself as a test dummy with my numerous lotions, ointments, creams etc. monitoring which ones yield any improvement and which don’t. I fear the next flare, every bump fills me with terror and taking showers fills me with dread remembering just how excruciating the pain was in the midst of the flare.

In the chronic illness community, we often say, “if we don’t laugh, we’ll cry.” This is such a profound truth for us. While I do find it much easier than a lot of people to laugh at the simple joys in life, I am quite aware of the utter exhaustion and misery that I work so hard to ignore. I feel like I’m constantly making life or death decisions every single day. I get so exhausted by the responsibility of caring for my own body, giving myself pep talks to get up and eat lunch, planning everything I’m going to do while I get up and go to the bathroom, or to call and debate with the pharmacy for the fourth consecutive day. I’m deciding just how much pain, how many lesions, how much blood, is too much. Too much for me? Too much for immediate survival? Weekly survival? Which doctor do I call? Which doctor actually responds to calls, or to Mychart messages? Can I take my nerve pain medicine, or will it lower my blood pressure too much? Is my bp too low, or is it too high to take that medicine? And probably the biggest one, was that symptom coincidental or caused by something I did and if so, what? Am I now allergic to broccoli? Am I actually treating these diseases or am I just “flavoring” my inevitable death? Am I complaining too much or am I downplaying too much? Is this particular* symptom treatable, a side effect or even worth mentioning? Do I even have the energy, time and/or money to consider treating this other symptom? Do I have any of these (nurse points to list) symptoms? Well yes, but those are normal for me. And the ever-laughable question, are you stressed? 😵‍💫😂 ummm yes. I think the better question is am I comfortable?

I often get asked how I keep going day after day, and how I still manage to laugh so much and smile at the tiniest things. The truth is, I don’t. I really do my best not to acknowledge just how miserable and sick I am. Instead, I try to constantly look for the ways God is tenderly caring for me and the joy he gives me in the small quiet moments of life. There’s an old phrase that says that God gives the hardest battles to his strongest soldiers. LIES. JK Lol 😂 I can tell you as someone who is well acquainted with hardships that I am a weakling. Hehehe. What I do believe though, is that God strengthens His soldiers through the hardest battles. If the God who created me, the universe and everything in it is on my side then what do I have to fear?  He is no stranger to pain, trust me when I say He knows what we are going through. I know that no matter my situation and no matter just how impossible it seems that when I choose to turn to God for guidance and strength, he gives me such incredible peace. Discussing this subject with a close friend recently really got me thinking about this and what I truly believe. Hope is a powerful gift and I have found that life trusting Gods plan has always been worth it. Just give him a chance, you won’t regret it.

So, to recap. My body has been in an all-out war against itself. God has continued to be good. Marveling in the utter joy of the silenced psoriasis but still struggling to get a handle on everything else. Exhaustion plagues me and giggles abound.

As always thanks for your love and support, every read, question or desire to know more about my disease speaks volumes for those of us suffering.

“May The Lord bless you and keep you,

The Lord make his face shine upon you and be gracious to you;

The Lord turn his face upon you and give you peace.”

Numbers 6:24-26

AUTHOR:

Alyssa Zuercher Tritch