The Pemphigus Diet

Tape Measure Wrapped Around Someone's Hand
My pants are just dropping off

This may go without saying, but dealing with significant food restrictions has had a noticeable effect on my waistline. This is not to say that tolerable foods have no calories, only that my inability to go beyond these foods (at least for now) has cut back on my overall consumption. You’d be amazed at how many foods contain chocolate. Eliminate fruit and the ice cream parlor becomes a dream rather than a calorie-laden reality. And tomatoes? My heart breaks, but I just can’t eat them, or incorporate them into anything else. No tomato sauce, soup, stews or other foods of that nature. My husband and I joke that I am eating vicariously through him as he makes his way through corn and tomatoes, both foods that are either very difficult or impossible for me to eat. I can eat chicken, beef and fish but not with any tomato-based product incorporated into them. My deep pots and pans are very lonely as they gather dust on their pegs. My broiler is doing double-duty. Thank goodness for herbs and spices, the ones I can tolerate at least.

My ability to eat a greater variety of foods is gradually increasing. I can now eat raisins in my morning oatmeal and make a rather tasty waffle topping with frozen, thawed cherries, yogurt and almond extract. My tongue does sting a little bit, but it does that all the time anyway and it’s no worse for the wear. The sores in my mouth are healing quite nicely, although it still feels like someone took a scalpel to my tongue and scraped off the first few layers of skin. That will take longer to heal, evidently. I am healing, though, and that’s the important thing.

So, how much have I lost to date? Since May between 10 and 15 pounds. I only wonder what will happen now that my mouth and tongue have improved enough so that I can eat a greater variety of foods. I don’t mind losing the weight, but it was for all the wrong reasons. I’d like to turn that around at the same time my scale continues to inch down, down, down.

Upchuck Emergency

I spent last weekend in our local hospital’s emergency room, after spending two hours purging dinner and part of lunch. This happened when I took my latest immunosuppressant drug, Imuran.  My previous immunosuppressant (CellCept) caused extreme dizzines, but this was far worse. I couldn’t stop throwing up, even when my stomach was finally empty of its contents. I asked my husband for a ride to the hospital, since I needed to quell nausea long enough to get and keep my night-time medications down.

This was not a new reaction. I upchucked food just about every time I used the new drug. I tried it with food, without food, soon after dinnner, long after dinner. I even tried an anti nausea medication I take for migraines, which helped somewhat the night I took it. My doctor was out of town, but his nurse was told to consult with their pharmacist, who suggested Dramamine as an anti-nausea agent. I was doubtful and so was the nurse. My fears were confirmed: I took the drug and an hour later had dinner. A half hour or so after that…BLECHHHHHH. Worshiping at the porcelain god, as the saying goes.

Rehydrate that girl

So far, though I was zero for three or four when it came to keeping the blasted stuff down along with everything else in my stomach. So, off we went to the emergency room, since it was 9:30 on a weekend night. By that point I was also pretty dehydrated. I was checked in and given the obligatory wrist band with my name and other vital statistics. They hooked me up to an IV and administered Zofran, a prescription anti-nausea agent via the fluid I was already getting. I think it helped a little, but it was hard to tell since my stomach was basically totally empty at that point and I was dry as a bone.

The hospital attendant used some pretty colorful language when she heard about Dramamine remedy. They should have prescribed Zofran. Even in the absence of my doctor, an on-call doctor was there and could have written the prescription.

But, as it turned out, the Zofran didn’t work either. I took it the next day and had dinner as I’d done before. The portion size was drastically smaller, since the idea of eating held no appeal. And, right back out it came. I re-acquainted myself with my bathroom toilet and let my dinner fly free. I was queasy for a day after that, even though I could eat small amounts of very unconfrontational foods – chia seed pudding for breakfast and a big, soft pretzel for lunch. Even with that I retreated to bed and stayed there for the rest of the day and night.

I’m back to normal now, able to eat whenever and wherever I want. Of course, I’m not taking the Imuran and haven’t for two days. I’m seeing my doctor Tuesday morning and we’ll go back to the drawing board. In the meantime, I still have the Prednisone and oral/topical steroids which do help. No immunosuppressants, though. I don’t think that’s such a great idea but I’ll know more next week.

Picture Perfect

I ended up perusing my photos on Google today and came up with an old picture of me from the hospital, back when the pemphigus was in a much more virulent state. The “before and after” scenario really helped restore a little mental balance. I really shouldn’t bitch that much about my current set of woes, all things considered.

This is a picture of me at the hospital, back when you couldn’t see my lip for the blisters and sores:

Margy at the hospital
Glum, and for a good reason

Did a quickie comparison and ended up with a rare selfie of me with a number of obvious improvements:

Margy's Mouth Today
Something to smile about

So, yeah. We’re getting there. We’re just not breaking any speed records doing it. That’s okay. It’s obvious progress and that’s the important thing.

Scrubbing Bubbles

Just turn on the water and get yourself clean

Well, hallelujah, I can now take showers at home. The hubby and his brother spent an afternoon a few weeks ago installing grab bars for our old, claw-foot tub. I can now get in and out unaided and, if I need or want to, sit down in a tub chair to scrub up. No worries about being dizzy and falling, although the overall design of the old tub isn’t the friendliest when it comes to standing up to take a shower. The bottom of the tub is not flat and it tips a bit towards the drain. That’s where the grab bars come in especially handy. The tub is also very narrow, and the addition of grab bars that extend into it makes it even more so. So, not a lot of room in there. The tub chair barely fits and I have to move it into the tub from the floor next to it in order to get both myself as well as the chair inside. Still, it works and will have me in soap and water for the time being.

The job had its challenges. With grab bars extending into the tub area, we had to figure out how to hang shower curtains so that the walls and floor wouldn’t get wet. My brother-in-law suggested cutting the curtains around the bars and then taping them back together. The hubby did that and so far it’s working. I have a feeling the adhesive is going to go at some point, but we’ll just tape it back together again. The important thing is that it’s working. A bit cramped, as you can tell from the photos, but I have a clean body and clean hair and I didn’t have to go to anyone else’s house to get them that way.

Bath Tub Chair
Have a seat, wet your feet!

So Sad, No Soy

I guess everyone is going dairy and soy free. Couldn’t find soy cheese to save my life. Same with the yogurt. Just coconut-derived products with the same calorie count and nutritional profile. Found a nut cheese that had the word cheddar written on the label, but I’m kinda’ dubious. Bought it anyway. We’ll see what happens.

Coconut Cornucopia

I may have found a temporary work-around to my ear pressure problem. I’ve been following it closely and trying to notice when the ear feels plugged. For some odd reason, the problem somehow seems tied to post-nasal drip and the mucus produced at the back of my throat. The more of that, the worse the problem. I did a Google search to find out how to treat aggressive post-nasal drip (and why just one ear? No idea). There were plenty of suggestions: over-the-counter expectorants like Mucinex, moisturized nasal passages and sufficient hydration. One article also suggested avoiding certain food, like dairy products, caffeinated coffee and tea, which naturally produce more mucus.

Not health food

I decided to give the dietary suggestions a try. The hubby and I visited our local Whole Foods, where we found a top shelf full of non-dairy “dairy” products like soy cheese and vegan yogurt. We also saw almond milk, decaf coffee and a creamer that consisted of a combination of almond and coconut milk.

I didn’t really know where to start, so I grabbed a few products and went home to experiment. My first impression? Whole lotta’ coconut, in the form of either coconut milk or coconut oil. Not the healthiest food product in the world, given the amount of saturated fat and associated calories. Once at home, I gave them a try. The yogurt? Well, it did have a similar mouth-feel but nothing close to a yogurt taste. The taste wasn’t really bad – just strange. It didn’t fill me up, either. I was just as hungry after eating it than before. And it was 140 calories for 2/3 of a cup. Yow. I decided I wouldn’t be snacking on that.

The cheese was – how shall I say it? – mild. It felt like cheese in my hands and on my tongue but where was the cheddar part? More coconut substitutions at 60 calories per slice. One slice did not go very far, particularly since my stomach reacted to the cheese in the same way it reacted to the ersatz yogurt. It looked up at me and said, “are you kidding? Where’s the food? I’m hungry down here and you throw this down, this…nothing?” Two slices (120 calories) was almost as ineffective as the one.

Oh, yes, and no protein. Protein’s my morning brain food. It’s the milk in my oatmeal, the whey protein powder in my smoothies, the cheese in my also-protein-heavy scrambled eggs. A little bit of milk gets splashed into my morning coffee every day. Oatmeal made with almond milk actually tastes okay, but there’s a total of 1g of protein in an 8-ounce cup. That does nothing for my brain and almost nothing for my stomach. Protein is filling and so far all I had selected were protein-starved, coconut-rich faux cheese, yogurt and milk. Obviously, I chose poorly. I will make another trip to Whole Foods and grab the soy products and hope to all heck that they taste less horrible than they did a few years ago.

The coffee creamer was the biggest disappointment. It just broke my heart. It looked so good! A combination of almond and coconut milk that I hoped would resemble the taste of dairy cream. It wanted to. I wanted it to. It failed. I poured it into my decaf coffee this morning and immediately followed it with a dollop of sugar substitute. It was worse than airline coffee, and that’s saying something. I never put sugar in my coffee but I was paddling on empty at that point. I needed something to at least bring it up to the standards of Jet Blue coffee. Non-dairy, probably powdered, creamer is making an appearance in my pantry very soon.

For all my bitching, though, the lack of dairy products in my morning (and afternoon) meal did relieve the ear problem (mostly). The less dairy I consume, the fewer problems I seem to have with my ear. Since I won’t be seeing an Ear, Nose and Throat doctor until October, I guess I can ride this out. Soy products pretending to be cheese, yogurt and milk, here I come!

Breakfast, Lunch and Dinner with a Pemphi-Girl

Photo by Haley Hamilton on Unsplash
Eggs and more bloody eggs

Breakfast: scrambled eggs with cheese
Lunch: Ensure nutritional supplement, 8 oz
Snack: bread with margarine
Dinner: steamed fish with soft steamed veggies

Breakfast: Ensure nutritional supplement, 8 oz
Snack: bread with margarine
Lunch: Scrambled eggs with soft steamed veggies and cheese
Dinner: Soup

Breakfast: Scrambled eggs with cheese
Lunch: Soup with bread and margarine
Dinner: Fish with soft steamed veggies
Snack: Ensure nutritional supplement, 8 oz

The eggs are getting pretty boring, not to mention bad for my cholesterol (although maybe the fish is counteracting it). I’m beginning to think one of the most frustrating aspects of this disease is my inability to eat a wider variety of foods. I can’t tolerate acid foods because of the lingering sores in my mouth, so fruit and tomatoes are out for now. For some reason, chocolate also adds pain and discomfort so that’s been eliminated. I also can’t tolerate any foods that are crunchy or crusty, like crackers, crusty bread, granola bars, chewier grilled meats, raw vegetables…you get the idea. Boring.

I got some Egg Beaters, basically fake eggs without fat or cholesterol. I’d hate to see the cholesterol results on any blood test right now. The very thought scares me. But, I can eat scrambled eggs and they’re not half bad nutrition-wise if I toss in some soft veggies. I’m particularly fond of broccoli, as long as it’s been steamed to death. And the cheese? Here’s a little secret: I don’t like the taste of eggs unless they’re dipped into toast or sunny side up over hash browns. Cheese makes scrambled eggs palatable. Toast? Nope. Potatoes? Yes, if the hash browns aren’t too crispy. I generally don’t have those around and the nutritional profile is…well, you know. I’ll just have to live with the eggs, bread and fish diet for now and hope that, eventually, my mouth gets around to healing itself.

Best Co-Pay Ever

One bunch of mint for mint iced tea. Kefir, tangy and barely sweet, fromage blanc with chives, which I spread over oat, flax and whole wheat flat bread. The hubby got corn (yum!), tomatoes (boo hoo, can’t eat) and peaches (maybe some day).

Better than a flu shot or more steroids. Side effects are horrible with the meds. Might try acupuncture to help control those.

I also just successfully crossed the Medicare mine field and will be on it starting September 1. Hooray!

Life in an Iron Lung

I’ve been all but immobilized this week, with some strange ailment in my right ear. I have no idea if it’s related to the pemphigus, but I do know that the disorder is stronger on that side of my face. For some reason, pemphigus or no, the fluid in my right ear collects and just stays there. In order to rebalance my ear pressure I have to lay down on my right side and wait, from several seconds to several hours. I am seeing an ear, nose and throat specialist next week to see what’s going on.

Meanwhile, I’ve been a prisoner in my own house and, in some cases, in a single room. I can get up and venture out for minutes as a time mostly, kind of what it must have felt like to live in an iron lung and experience occasional ventures with unaided lungs. It’s driving me nuts, mostly because I tend to live an active life and this experience is turning me into a dead log, energy-wise. I want to do things but I can’t and that’s frustrating.

The only thing that helps is an air conditioned, low humidity environment and even that’s short-lived. In the meantime, I’ve started experiencing severe side effects from the prednisone I’m taking, to the point that my doctor is weaning me off of it and starting me on something else. I see him tomorrow, ear or no ear, and then follow up with my own primary care time on Thursday.

I’m experiencing dizziness and a feeling as though I may fall. My balance is completely off, partially due to the drugs and partially due to the ear condition. I’m also experiencing shortness of breath and a rapid heartbeat, nausea to the point of wanting to throw up, hand tremors and poor cognition. I’ve wanted to write in this blog all week but couldn’t get the mental energy up until today.

I need to get ready to re-enter my iron lung now. Anyone else experience ear pressure problems while taking prednisone or dealing with pemphigus vulgaris? Just wondering. Is this the disease, or some strangeness with me?