at the intersection of discouraged and exhausted
by kittery
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?
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:
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.
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.
See if there is anyone in your area that does NAET JMT treatments. My partner is a chiropractor and has been really successful treating unusual skin conditions with those medthods. We’re in Michigan though.She has a FAQ on her website that explains what it is. It’s worth a try. http://drlindapalter.com/
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Jesus H., Kittery. I just met you and was all giddy about meeting a new friend, and then I find out you’re dealing with this shit? I am so, so sorry.
The fact that you write about something so blatantly terrible with good humor is beyond impressive. For the tiny bit it’s worth, I really really hope you find an answer. My father has undiagnosed chronic pain and I truly believe it’s the worst thing life can throw at you.
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We can still be friends!
Thank you for seeing the humor. I started writing it in tears, but didn’t want it to be a long sob fest, so…thanks. 🙂
Ugh. I feel for your father. I hope he finds a solution too. Do you remember Deanna’s post about finding out what her chronic pain was? It makes my head spin that doctors ignored her and trivialized her symptoms, and a collision saved her. Unreal. What happened to do no harm (and maybe try to help)?
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Ha! That made me laugh. As for me, I have a terrible love of puns. Can we still be friends now?
I haven’t read Deanna’s post on that, but I’m heading off to find it now.
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I’m with Jennie.
This is so awful, I hate not just that you’re dealing with this but that it’s such a damn mystery. There are certain things we can grow strong enough to handle in life but an unexplained pain or burden is a twisted sort of hell.
I wish I knew something or someone that could be of help. Some weird part of me wants you to go to like an Eastern/voodoo/herby sort of doctor. Ugh. Be well, please.
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Agghh!
I wrote out a lovely response, aaannd…gone.
It is awful. Thanks for seeing that and not calling me excitable/dramatic (one dermatologist pretty much said that). Not knowing is hugely frustrating! The only (ONLY) silver lining I can find is understanding what it’s like on the ‘other side’ of chronic pain. My grandmother is ninety-four, and really starting to feel her age. Pain is a bitch, but more than that, it’s exhausting. So I think I have a better understanding of her mental state now. I’m staying with her, and I wish I could make everything better, and I can’t. But I think my experience has changed how I approach Grandma’s situation. At least I hope it has, otherwise this shit is for naught. 😉
And bring on the voodoo! Stick a bunch of white pins in your guy, for me and Grandma. 🙂
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This sounds awful. I cannot tell you how much I feel for your situation. I have no solutions, only hopes that you will find your answers–I always feel like it is better to have an answer (even if it’s an awful one) than no answer. And your husband married you for better or worse, so he’ll love you no matter what. Just because right now it feels worse, eventually it will get better! Hang in there!
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Agreed. An accurate diagnosis is better than guessing, even if it’s not an easy fix, at least I’d know what I was dealing with, and know I was pursuing the best treatment.
My husband says the same thing. Worse just arrived sooner than anticipated. And it’s a bit of a drag. 😉
Thank you for the sympathy and hope (and for following!). 🙂
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Sweet cheese, woman! Bless your soul. I’m so sorry you have to go through this; I cannot imagine your pain and frustration. And you write about it so openly and with humor! You. Are. Amazing.
I wish for you comfort, and an accurate diagnosis. No one should have to live that way. hugs
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Aww, Beth, thank you. 🙂 It’s easy to imagine my pain and frustration – just imagine a lot, hah. I have a couple appointments next month at a big/respected hospital…I’m hopeful! Hugs back. 🙂
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Oh God, I feel your pain! When I first tried to tell my doctor that I was having allergic reactions to mammal products, he basically told me I was insane. So, so frustrating when they just shake their heads and say, hmm, I really don’t know.
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Thanks…I have plenty to share. 😛 Mammal products! Could you explain, please? Like food, or anything/everything? Did you finally get an official diagnosis, or are you still being ignored?
Also? I’m not alone! Thank you. 🙂
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I finally got a diagnosis. It’s Alpha-Gal allergy and they think it comes from a tick bite. I started getting horrible stomach pain, nausea, vomiting, diarrhea, hives, trouble breathing, etc 4 to 8 hours after eating beef or pork. Now it has progressed to anything that comes from a mammal. I can’t eat anything that has “natural flavoring” because that could be plant or animal. No milk, beef, pork, venison, and on and on. It’s relatively new and the main studies are being done in Virginia. You can google lonestar tick meat allergy to find out more. I’ve got other medical problems that are still being ignored though, so I know how awful that is. you are definitely not alone!
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Yes, Dr. M. told me about that! He said it’s been creeping up the Eastern Seaboard in recent years.
Oh my god, “natural flavoring.” The single biggest pain in the ass for allergy sufferers. ‘Is it poison? It might not be, but they won’t own up to it…should I risk it? Do I ever want to risk it? No. Feeling terrible is never worth it. I could probably eat this. It might be safe, but…I’ll never know. No thank you.’ <– Ugh.
I wondered when you said mammal products if it was all food (which is hard enough) or if it had extended to wool/leather, which would be beyond infuriating/impossible to accommodate safely all the time.
No! I'm so sorry you still have untreated issues. That's hell. If you need to vent, come find me anytime, I get it.
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For me it hasn’t gone that far yet…some people in a group I’m in on facebook react to fumes from cooking meat, etc. I can’t imagine. Same to you, if you need to vent. 😉
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[…] mentioned my ongoing health issues before, and lately, I’ve watched my teenage niece struggle to recover from injuries she sustained […]
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Did you ever get a biopsy of the lesions?
You mention lupus. I look like you and I apparently have lupus. It’s a weird one though. They biopsied a lesion on my neck and it was lupus, but I do not have the usual cheek rash. I am finding the the sun certainly makes my skin worse now that I am avoiding it. My face is often very bad.
I also have issues with egg and soy. Since stopping egg my stomach and esophagus work better. Soy is just plain hard to avoid.
I am having a rough time, and I am finally seeing a Rhumatologist this week since the Lupus diagnosis with a dermatologist over a year ago.
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Hi!
Yes, in August 2014 I went to a major hospital and had biopsies done. Eczema. The same thing doctors had said since I was weeks old.
It turns out Dr. M. was a crackpot (at least for me). He never did any proper testing, and was so convinced he was right that he kept prescribing medications that were poisoning me.
I continued to suffer with symptoms unabated (and worse, actually) until I discovered a doctor who had seen incredible success with an experimental drug. When I contacted her, that trial wasn’t open to new participants, but she wanted me to come in anyway. That started me on my first of three clinical trials. The first one didn’t work. The second one was amazing – I was back to looking totally healthy and feeling much better. The third one (I’m still in it) works even better than the last drug.
The breakthrough drug that I mentioned earlier was FDA approved earlier this year. It’s horribly expensive, but some health insurance does pay for part of it. It’s Dupixent, the generic name is Dupilumab. I haven’t tried it, so I can’t vouch for it, but it’s paved the way for the drugs that I’ve trialed, and may be worth looking into.
If you want more details, or have questions, or just want to talk to someone who understands what it’s like, please email me. kittery.lag @ gmail.com
I hope you get answers and help really soon! Good luck with the rheumatologist. 💗
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Also, if you want help avoiding soy, let me know. I’ve been doing it for eight years and can direct you to some brands, or sneaky ways companies try to get away without labeling it in their products, and that might help you.
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