Well, folks. It’s been about two months since my one year anniversary. My lowest weight to-date was 171 pounds. (Two pounds more than on my anniversary…) It felt mahhhhvelous.

There’s me, in the dressing room of a TJ-Maxx, with a ton of size 8-12 clothes that I tried on. I did end up buying this size 8 dress, and I love it.

However — I can’t wear that right now.

I’ve gained 14 pounds in a month.

Let me tell you why, the best I can remember it. It’s a long story.

Back in April, I was really sick for about a week. I had some sort of virus. They didn’t do any blood testing, as I would most likely get better before the testing came back, and there is nothing they could do about a virus anyway. My fever got up to 104 one day, I was blowing my nose all the time. I had a cough, and hives on my hands and feet. They were not particularly concerned with this. Hives are sometimes a symptom of certain viruses. They gave me instructions to take Benadryl, Tylenol, and take it easy.

The next day, my eyelid was so swollen I could not really see out of it. It’s called angioedema. It happened once before, weeks ago, for no apparent reason. I was miserable, had to go back to the doctor, but couldn’t drive. Most of my local friends were working. A great friend of mine from Boston drove all the way to Connecticut to take me to the doctor. (Thank you, Claire.) The doctors said that it was also probably related to the hives (which had disappeared), and the virus, and I would be fine.

The following day, my eye was normal. No hives. No angioedema. And feeling much better. Back to work soon after.

A couple of weeks later, my eye explodes again. It started on my drive into work. 45 minutes later, it’s basically swollen shut and people cannot stand to look at me. Lots of Benadryl, not much improvement.

Soon after, I’m getting spotty amounts of hives on a regular basis. First on my arms and feet and legs, and later everywhere. By late May, early June, I’m covered in hives on a pretty regular basis. Benadryl doesn’t do anything to touch it. Much of my body would look like this:

Enough was enough. Doctor takes one look at me, and puts me on a mega-dose of Prednisone and refers me to an allergist. They’re already convinced that it’s not environmental or anything I’m eating. It’s been going on too long, moves around my body really quickly, and completely covers me at times. And anyway, before I even went to the doctor, I switched back to all familiar products I’ve used for years. Rewashed all of my clothes and sheets, just in case.

Doctor is starting to use scary words like “Auto-Immune” and “Lupus”, but then ruling that out because my hives don’t stay red when you apply pressure. Therefore, I don’t have vascular lesions. I don’t have joint pain. I have fatigue, but I work and school so much that to be not-fatigued would probably be abnormal. It’s just….chronic hives. They don’t know why. Go home, take the Prednisone and a daily Zyrtec, and see what the allergist says.

It got better. Trouble is, the mega-dose of Prednisone was way too much for me. I was immediately mood-swinging, and miserable. And still itchy some days. It was more than a week until the allergist could see me, and I couldn’t stand to be in my own skin. The drugs seemed to be making it worse, or the hives would be totally non-existent anyway, and the Prednisone made me insane. I was not convinced that this was an “allergy”, and neither were any of the nurses that I work with. They were talking about blood tests, none of which had been done. I stopped taking the Prednisone. I decided it was time for a second opinion. Got in with a new primary care physician closer to where I live and work. Figures — no symptoms. He agrees with everything the first primary care said. Zyrtec, Prednisone, and go see the Allergist. It so happens he knows the allergist I was going to see, and knows that he will also help to rule out auto-immune causes. I hold out hope for 5 more days.

At some point in here, I called my RNY bypass surgeon to see if they have ever heard of this happening with bypass patients. They do some research, no real connection between RNY and auto-immune or allergy development. So, good news fellow WLS bloggers. It probably won’t happen to you.

July 1st – Allergist Day – No symptoms… Freaking figures. But: I have pictures. The allergist listens to everything I say, looks at all the pictures, and nods his head. He asks some simple questions.

Do you get hives along your bra-line and waistband? – Yes.

Do they move quickly all over your body? – Yes.

Do they leave behind marks? – No.

Is there any unexplained bruising? – No. But sometimes I scratch so much/hard, that I bruise.

He nods. He has my diagnosis:

Chronic Idiopathic and Delayed Pressure Related Uticaria with Occasional Associated Angioedema

Sounds impressive, no?

No.

….it doesn’t actually MEAN anything helpful.

It means I have hives. All the time. For no reason. And sometimes for the reason that pressure has been applied on my body. And sometimes my eyeballs swell up. All of this, I already know. And none of it makes me feel any better.

He goes on to explain that for some reason, my body is dumping massive amounts of histamine into my skin and my cutaneous and subcutaneous blood vessels. This was probably brought on by the virus I had in April. Either the virus, or the antibodies I created to fight the virus, might have been the catalyst for this or exacerbated it to this point. Or it could be totally unrelated. The good news? It’s not serious. The bad news? It could totally drive me insane. Because there are no other symptoms, there’s not a whole lot they can do besides pump me full of different cocktails of antihistamines and steroids to try to put out the fire, and then hopefully weaning off all of the medications will result in the Good Ol’ Aslynn being back and hive-free.

It’s not an awesome answer, but he’s the first one who really listened to me, really sounded like he knew what he was talking about, and he gave me a plan.

  • 1 Allegra in the morning
  • 1-2 Zyrtec at night
  • 1 Zantac twice a day
  • 20 Mg of Prednisone three times a day, and then wean off slowly after 3 days.

Brilliant. Let’s do it.

If you recall, I said I had no symptoms this day. It was a Friday. I had already been taking 1 Zyrtec a day, so I took two. An hour later, my hands arms totally explode into hives. I am absolutely devastated.

I deduce that perhaps Zyrtec had been the problem the whole time, and I stop taking it. I call the allergist, but he’s not on-call, and I don’t want to tell my whole story to the guy who is. Monday is July 4th, the office is closed. All weekend, I struggle with the hives, but take the rest of the medications as prescribed. At a nurse at work’s suggestion, I use Claritin instead of Zyrtec. Nothing seems to help. Also, I’m in New York for the holiday weekend, and the sun and sweat seem to make everything worse. Here’s a picture after spending just a few hours in the sun at a winery. (Not the same weekend.)

Yes, I had worn sunblock.

We were probably outside for 2 hours. I was under an umbrella. The aloe was because it wasn’t that itchy, and I was afraid it was a sunburn. It wasn’t. Here’s an hour later, after taking some drugs:

Looks fun, right?

So, I call the doctor Tuesday morning. He says it’s definitely NOT the Zyrtec. He says to try 2 Allegra in the morning, throw the Claritin away, and add Zantac twice a day to help with the absorption of the anti-histimines on a molecular level. We up the Prednisone back up again. He tells me to stay the hell out of the sun, the heat, and not to work out. Sweating and heat explode the histimine.

Good news, it works. I’m relatively hive-free most days. Bad news, it’s not 100% and hives are starting to show up ON MY FACE. And my EARS. I cannot describe to you how much it sucks to have hivey-ears. I wanted to rip them off. Meanwhile, if you’re keeping track, I’ve been on Prednisone for a while now, on and off, up and down. And I’m starting to swell. The biggest side-effect of Prednisone, and any corticosteroid, is weight gain through fluid retention and appetite increase. I can tell you, I’m starting to feel both. Thankfully, it was time to wean down the dose.

So, July 7th. 10 MG instead of 20. Not a huge jump, right? Wrong. I totally explode into hives. Now — I’m angry. I’m hungry all the time, I’m still fucking itchy, and my face is REALLY swollen. I go back to the allergist that day, so that he can see. I bring a nurse from the office with me, because they’re all still muttering about the “ridiculous” lack of blood tests. They run through the whole thing together. He maintains the same schtick we went through in my first appointment. She agrees with him, which makes me feel only moderately better. But I’m still feeling desperate. To be swollen and itchy at the same time is pretty much bullshit and I can’t take it. I’ve gained 5 pounds, and it feels like it’s all in my face/cheeks.

New Med Regime:

  • 2 Allegra in the morning
  • 2 prescription-version Zyrtec (I forget the actual name) at night.
  • 20 mg of Prednisone TID for three days, then wean.
  • and Zantac, twice a day.

No change. Every time I try to wean off the Prednisone, the hives come back. The prescription version doesn’t seem to change anything. It’s expensive. so we switch back to regular Zyrtec when it runs out. My face breaks out in just a couple of hives pretty much every day. If I’m late with meds, I get itchy. If I’m in the sun or even just in the heat (even in the dark), I get itchy. And because I’m retaining fluid, I’m sweating more easily, which means I’m breaking out in hives on my face more easily. I try to wean a few times, but I’m itchy, swollen, I can feel all of the tissue in my cheeks and my arms and my legs, and my stomach just totally fluid-filled and so very very swollen…. and starting to really feel a significant appetite increase.

Sometime between around 7/14 I do a calorie count because I feel like I am eating non-stop. On average, for the last week or so, I had been eating three times as much as I normally do. And I’m still hungry. All the time. Not only am I suffering through swollen and itchy, but I’m bouncing painfully back and forth between totally starving and absolutely full. I’ve done well with my portion sizes for the most part, so my pouch has stayed relatively small. But I am burning through food like nobody’s business.

Wednesday, July 20th. I call the doctor. We up the meds.

  • THREE ALLEGRA IN THE MORNING
  • THREE ZYRTEC AT NIGHT
  • Zantac twice per day
  • and good ol’ Prednisone, back up to 20 Mg, three times a day, then gee by golly we are going to WEAN after three days!

Thursday, I have hives on my face and ears, and I can’t even stand it. The allergist had mentioned the next step would be to refer me to a Chronic Hives program out of Mass General in Boston. They have the ability to prescribe some asthma medications off-label that have proven to assist with chronic hives. Allergist isn’t working again until Monday, and my insurance doesn’t require a referral, so I pick up the phone and make an appointment myself. August 19th. It seems like a lifetime away, but realistically, isn’t that long to wait. My mommy is going to come with me. I will need her to advocate for me, I’m feeling so desperate.

So, here I am on day three, what seems like “Take 207″ of trying to wean off the Prednisone. Almost-no hives since Wednesday. Today I will try 15 mg of Prednisone TID, instead of the 10mg that had been done prior.

All this food and fluid has packed on about 14 pounds. I can’t work out. I can’t stop eating. I had to pull out bigger bras and pants to be comfortable. I can’t even go outside for extended periods of time. It’s so depressing.

I had been dating a lot, and really enjoying it. It’s still absolutely fascinating to notice when a guy is attracted to me. My mind is constantly blown. However, not feeling quite so sexy with these Prednisone-cheeks and my new fancy clothes not fitting very well. (Though, many insist I don’t look nearly as different as I must feel. That might be true, but I feel like shit, so…doesn’t really matter.)

I’m trying so hard to just take this for what it is. A temporary (though terrible) setback. Getting rid of these hives is way more important than fitting into a size 10 pair of jeans. But it is so miserable to be uncontrollably eating SO MUCH and to have taken such a climb on the scale. At first, my resolution was to just take it as a free-pass for a while, without going totally crazy, and sticking to strict portion sizes to maintain the integrity of my pouch. Now, I’m so heavy and uncomfortable that I think I need to go invest in lots of fruits and popcorn and other bulky foods so that I can constantly eat without packing in the calories.

It’s absolutely maddening. I’m angry, and miserable most of the time. This blog post does not have a happy ending. Hopefully I will have a happy update in the future, but for now, life kinda blows.