The suicide rate of people with your condition is very high.
When I heard those words last year, August 13th, to be exact, I almost let a laugh/choked sob out. I stared at my new doctor (Dr. M., allergist) and felt relief. “So I’m not just being crazy?” Smiling, he shook his head and said, “No.”
He told me what my problem was. He wrote out some prescriptions. He told me I’d be significantly improved by the weekend.
I walked out of that appointment buoyant.
On Friday, I was in the ER. Again.
Friday afternoon my sister in-law came over. She brought me a fruit cup and a movie from Redbox. People tend to get a little worried when they call you, and the conversation mostly consists of you in tears. She knew it wasn’t going to be good. But when I went to the door to let her in, she stood frozen on the doorstep and stared. Finally she exclaimed, “Oh my god, you look like a horror movie!” (Note: If you find yourself in a similar situation, comments like that don’t really help. If a person looks like they belong in a horror movie, they feel worse. They’re aware of what’s going on, trust me.) “Thanks,” I mumbled, and hobbled away from the door. She washed some dishes, she made my bathroom shiny with a spray can of Scrub ‘n Bubbles. She cleaned some fruit according to my new doctor’s specifications: in vinegar first, and then regular water. I think she even did some laundry. My niece and baby nephew came along too. I wanted to interact with my nephew, but couldn’t. I tried to relieve my conscience by admitting I didn’t feel like I could hold him safely. That I felt weak, shaky, and like I could barely stand upright without having visible tremors.
We waited for my husband to come home.
My sister in-law called him on my cell, told him she thought I should go to the ER. I spoke with him. I told him it “wasn’t good,” but I was also hesitant to go back to the ER. He knew the reasons why, that the hospital was a revolving door, nobody could seem to find any answers, and it was an expensive waste of time.
A couple hours later, when he got home, I conceded. I winced and gasped as I exchanged my tank top and pajama shorts for a more socially acceptable t-shirt and shorts. I sat in the car twiddling the dials, first the vent, then air-conditioning, then heat, constantly readjusting. No matter what temperature the air was, it hurt. In the waiting room, I sat hunched up, clutching my knees to my chest, rocking back and forth. Emergency rooms are special hells for those suffering, but not suffering enough. You can end up sitting there for hours, wanting to black out, zone out, or do anything to make your focus shift, even for a minute, but you can’t. You listen intently, you prick your ears like a hunting dog for the click of a door opening, the squeak of Crocs, the swish of scrubs, anything that might signal it’s time to go into that coveted empty room. The one that might hold answers, or relief, or at least some solitude where you can be in pain a little less publicly.
I was given IV fluids, Benadryl, Percocet, and an injection of Decadron.
I didn’t feel much better, but the Percocet brought my pain level down enough so that I was able to doze off a little bit. After a couple hours, the nurse walked in and exclaimed, “Much better! You’re much improved, good!” These pictures were taken about ninety minutes after that…would you like to know what much improved looks like?
My entire body was like this. Front and back. If you think that hurts like hell, you’re right.
This is several hours after steroids had been administered. Note my hand, that’s how I looked, everywhere.
When I saw Dr. M. five days after my ER visit, he increased one of my prescriptions and added a Decadron taper. My skin improved over the next couple weeks. I also felt like my brain was encased in cement, I couldn’t focus, answering simple questions felt like it took two hours. To say I felt like I was in a fog is an understatement. I was also nauseated/starving most of the time, usually at once, and I felt like my sense of taste had completely deserted me. Nothing tasted right, everything tasted like roofing shingles, or worse, but I was so ravenous, I was ready to eat the paint off the walls.
Fast forward a couple months, I’m off the Decadron taper. In addition to the fun side effects I’d already experienced, I discovered neuro angioedema. Fun stuff. Neuro angioedema is a fancy name for when something brushes the back of your neck and you experience pain you’d only associate with a severe beating. Sitting there helpless as the pain creeps all the way up your clavicle, neck and head, as well as down into your shoulders is a great feeling. Double the fun if you experience that while your husband sits next to you and watches you swell up before his eyes. It also leads to this:
Another unmissable ER experience, mid September, 2013.
So after Dr. M. and I decided to let my leaky blood vessels rest, and to lay off the steroids for a while, I progressed into this. My husband and I have named these lesions “cigarette burns” ’cause we’re obvious, and that’s what they look like.
“Cigarette burns” mid December, 2013.
When I was days old, I had ‘skin problems’ and I was taught to live with it. The pediatrician told my parents I was allergic to eggs, and the conversation died there. I avoided eggs. My skin never improved. I started eating eggs, it didn’t make a difference. When I was twenty-three, I cut soy out of my diet, within a month, I had healthy skin. You could look at me and never be able to tell I’d had debilitating eczema. Shortly after, I met the guy I would end up marrying, and immediately after we started dating, my skin went to hell again. He cut soy out of his diet, and my skin went back to being healthy and perfect. Sometimes I would have a run-in with soy, my guy would end up feeling resentful of my diet restrictions and he’d sneak a little soy…I would know. It wasn’t in my head. It’s not like I saw him eating soy and worked myself into a reaction. Even if he flossed, brushed, and used mouthwash and waited a couple hours, with one kiss, my body would know. He figured it out and stopped ‘testing’ me. My skin went back to perfect.
In January 2013, I started having episodes of severe abdominal pain. The first time it happened, I wound up in an ambulance at one o’clock in the morning. Severe pain, vomiting, always accompanied by the worst stench ever – sulfur.
Doctors couldn’t figure it out, any of the times I went back for the same complaint. Gallbladder? Acid reflux? No idea?
I got referred to a gastroenterologist for an endoscopy. It came back clear. Additional testing for my gallbladder was recommended, the results came back okay. I was referred to a surgeon to possibly remove my gallbladder but he laughed me out of his office. The gastroenterologist suggested I start taking probiotics. The abdominal pain vanished. But my skin started acting up. That was in April.
In August, I saw Dr. M. for the first time. He said I was suffering from Dermatitis Herpetiformis (celiac disease). He prescribed Dapsone and Doxepin. I went home and tossed every single thing in my house that contained wheat or gluten. Every dish was scoured and sterilized, the toaster was gone, produce washed with vinegar (to kill any errant proteins?) before being rinsed with water. We don’t eat meat that has been fed grains anymore. I haven’t eaten any pork products since last summer, I haven’t eaten red meat since December, I’ve barely started eating (organic) chicken again, but only with every scrap of fat carefully removed first. I haven’t eaten shellfish since I was four and almost died. I haven’t eaten soy in years. I have painstakingly removed wheat/gluten from my life (and my husband’s) since August. I avoid oats because of the possibility for gluten contamination, and all beans and peas, because they’re in the same family as soy. Last year we got our own chickens, so I can eat eggs that are ‘safe.’
I am not better.
I’m wondering if part of my problem is undiagnosed lupus? It would explain a lot of things in my life, that I haven’t even been able to share here, but I don’t ‘need’ it to be lupus, or celiac disease. I just want help. I want to be better. I want to be in my twenties, and actually be able to live. I want my husband to come home at the end of the day to a wife and a life that I don’t feel ashamed of, for dragging him into this miserable, unsolvable hell.
I went to my primary care physician today, asking to have my medical history looked over again, to see if there is anything that didn’t make sense at the time that could be revisited, to pursue any ideas concurrently with celiac disease. I got the usual: not a clue, wow that’s tough, best of luck to you speech that I’ve been getting from different doctors and specialists and emergency rooms for more than two decades.
The suicide rate of people with your condition is very high.
I’m not sure what my “condition” is, because I’m doing everything ‘right’ and it’s not helping. And I’m not suicidal. But I get it. I really do.
If any of this sounds familiar, if you’ve ever known someone go through something like this, please share. I’d love to know what helped.