December 22, 2014

Update: Plagued with PUPPPs

On Day 14

I saw both my OB and a dermatologist after sharing the PUPPPs pain, and lo, it turns out this is the most severe case my OB had ever seen. No wonder it didn’t seem like she had a sense of urgency in offering alternative solutions. All her other patients did fine on hydrocortisone and Benadryl so she didn’t realize how bad it really was.

They snagged us a same day referral (just had to ask, thanks Kaiser!) to the dermatologist because while OB still thought it was just the worst PUPPPs ever, she also wanted the derm to confirm that it wasn’t anything she was missing. We dashed over to the derm who took a look and agreed that it wasn’t likely to be anything else. Lucky me, I’d just been cursed with a horrible case of something they can’t cure, and she told me that most of the cases they see tend to take 4-6 weeks to resolve, no matter when it starts. :O

So we had a couple options: more topical stuff but prescription strength, or actual steroids.

I have done courses of steroids in the past for pain treatment so the side effects weren’t a huge concern for me, but I wasn’t baking a human critter at the time so we all wanted to avoid that option for now.

Mind you, it’s all about the timing. For some reason, on the day of the appointment, the skin had backed down about a notch and a half. If it had been on the actual miserable miserable weekend where I wanted to skin myself, I’d have gone straight for the ‘roids and damn the torpedos. Hell, if I KNEW that inducing would resolve it, I’d have been in a surgical cap and gown and standing just outside the OR tapping on their window. It was that bad.

But having it deescalate from “every MOLECULE of skin hurts or itches or both so that I can’t stand, sit or lay down without something being completely irritated” to the next level of “most skin hurts or itches or both, but there might be one way to sit or lean for a bit” made a huge difference.

Just that maybe 20% reduction in pain and discomfort was enough to make me feel more like a human and actually see straight again. It was much like the first time I was drugged out on narcotics for pain and was barely conscious.

Things did seemed to help
Grandpa Pine Tar Soap, shower & soap 2-3x/day (I went through 1 bar in 4 days at first)
Prescription Steroid cream, 2x/day, kept refrigerated
Eucerin Eczema Relief Instant Therapy Body Lotion, 2x/day, kept refrigerated
Aveda All Sensitive lotion, 2x/day, kept refrigerated

Things that might have helped but who knows, so I did it anyway
Drinking V-8 (and otherwise mindfully hydrating)
Generic colloidal oatmeal cream for eczema, basically the generic of Aveeno
Benadryl and Cetirizine, generic for Zyrtec

Things that were totally no good
Gold Bond anti itch lotion, holy moly was the feel of mentholated lotion terrible
Oatmeal bath, I couldn’t tolerate cool water, but the lukewarm water was still too hot and sent my skin into overdrive
Claritin, just didn’t do a thing (then again, the Benadryl just helps make me sleep once in a while)

After 2.5 days on the steroid cream and other routines, I noticed a major reduction in the angry rash look on my belly and hands. There doesn’t seem to be a strong correlation between what it looks like and how it feels though: the belly looks better and is less itchy but the  bumps and masses on the hands went down, leaving dark splotches, and they feel three times itchier.  And the rash on my legs has both spread and gotten worse. So none of this makes much sense.

It got to the point where I just resolved to stay up and work all night because all I was doing was tossing and turning uncomfortably, replacing ice packs for hours. The theory was that going to bed which focuses the mind intensely on the itch was the reason it was exponentially worse. Turns out, nope. The increased night time discomfort still flared up even though I hadn’t gone to bed. Sleeping an average of 2.5 hours a night sucks.

On the other hand, I got a lot more work done just assuming I wouldn’t sleep til 5 am (I was right) and pottering about accordingly even if I was supremely uncomfortable. And I stopped having to waddle around as an awkward victory penguin, arms raised and held away from my body lest anything touch anything.

Small victories, like being able to take my own plate and glass with my own hands all the way to the table, were duly celebrated and appreciated. It’s sad when that’s a victory but I’ll take it.

/update.

December 15, 2014

On being untouchable and the torment of PUPPPs: a (plaintive) rant

Once, I thought, this pregnancy thing is tough!
Once, I thought, it’s so frustrating that I can’t get up without help, eat normally, see my feet or tie my shoes, lie down without getting heartburn or short of breath, or getting the crap kicked out of me by an (always) amped up LB.

Now, I know better. That’s all nothing next the cursed PUPPs. Every centimeter of my skin, from neck to toe, is covered. I am become a walking mass of lumps, bumps and rashes. I feel like a disgusting reptilian leper.

All the formal literature seems to be clear on what we know about PUPPPs, a misleadingly cuddly acronym for basically a skin plague (Pruritic urticarial papules and plaques of pregnancy):

It “usually” strikes women in their first pregnancies, in the 35th week, 70% of cases are in women carrying boys or multiples, the cause is unknown and generally won’t go away until delivery. It’s not supposed to be contagious, and shouldn’t affect the mother or baby long-term or after birth. I guess the fact that PiC hasn’t caught it is evidence that it’s not contagious.

Basically, it’s nearly all completely useless information. I’m glad it’s not contagious of course and even more importantly that it shouldn’t hurt LB but otherwise, who the hell cares if it normally strikes people carrying multiples if you get it and you’ve got a singlet? Or if it normally starts at 35 weeks and you get it much earlier? The more pressing thing is that which we have no answer for: what causes it and how to deal with it!

The very cynical part of me says there’s no formal research on this because it only affects women and has no mortality rate. Never you mind this occurs in 1 of 20 women and has driven those with severe cases to actually induce as early as is safe to seek relief, it’s not warranted a single published study that I could find.

So I’m left digging out forum after forum of anecdotal experiences which tell me that women are experiencing it when they carry girls, that some are afflicted as early as at 12 weeks all the way up to the “usual” 35 weeks, when they’re on their second, third, or fourth pregnancies, that it goes away after a week or two for some people and doesn’t until delivery for others. For still others, horrifyingly, it doesn’t go away for weeks after delivery and even more horrifyingly, some people are getting it after delivery and living with it for MONTHS.

I guess that last one mostly academically horrifies me because I’ve got it now. But as awful as this is now, my imagination is more than up to the task of envisiong being the one for whom delivery doesn’t clear it up and then add a helpless newborn to the mix when I myself am the next thing to useless.

Not so silent suffering

The itching is far more intense than chicken pox. I clearly recall being seven, left lying on the bed during the summer covered in lotion, and being sternly told NOT TO SCRATCH. I did NOT scratch. It was very uncomfortable but the lotion did help the itching, so of my “things that sucked” memories, it was just a crappy experience.

This has reached the level of Utter Despair. It’s comparable to those moments in my late teens where I was trying to get through college and working 100 hours a week. That in itself was crappy but it was the crippling pain in my hands that truly made it Hell.

For years, back then, I only slept a few hours a night because the pain prevented me from falling asleep or woke me from fitful sleeps. For an otherwise anti-emotion teen, more nights than I care to admit were watered by hot, angry tears, arms suspended above my head on ice packs in a futile effort to dull the pain.

At a mere 3, 4, and 5 days into the itch and pain dominated sleep deprivation, I found myself spiraling down that pit again.

ARGH.

My skin has became so sensitive that even air currents are uncomfortable. Most fabrics trigger the urge to scratch on contact, only the softest of cottons were tolerable, and skin to skin contact is the worst trigger of all so lathering the special soap and applying lotion is a special kind of teeth-gritting, do-it-anyway, torment.

Where there’s any skin to skin contact or pressure, say from natural weight from lying down, basically any place that starts to build up warmth at all, the rash flares up angrily. Basically sleep was out for a week while I figured out how to cope. One night, I resorted to standing outside during the storm trying to chill my entire body so that my skin would calm down.

Where LB’s weight presses down on my legs, those happy bumps have merged into MegaZord-sized masses that moved past itching to plain old pain. Minor consolation: it’s so bad that I’m not even tempted to scratch them.

I honestly look like I taunted a few hives of killer bees and hung around for their justice.

I’ve tried everything that the doctor recommended and everything eczema-experienced friends recommended; 3 kinds of antihistamines, 4 kinds of lotions, oatmeal baths, hydrocortisone, 3 showers a day using the anecdotally recommended pine tar soap. Even drinking V8 juice which I don’t like one bit because I don’t even know why that’s supposed to help.

None have brought actual relief, only the oatmeal lotion and Sensitive Skin Aveda lotion seem to keep the burning itch from getting worse. The hydrocortisone occasionally calms the worst on my hands, but can only be used sparingly and where my skin stays cool because it stays greasy and seems to conduct heat, exacerbating the discomfort. It also gets on everything since it doesn’t absorb. Because when everything up to my fingertips are affected, I really want to do a few extra loads of laundry!

My hands are afflicted with the smallest and most densely packed bumps so I’ve got quarter sized bump-clusters on the backs of my hands, on my fingers, between my fingers. This makes typing a hover-above-the-keyboard affair, exhausting to say the least.

The entire belly, Ground Zero for this nastiness, is of course thoroughly cloaked under bumps of all shapes and sizes, as is my back, so leaning on anything in any direction is strongly contraindicated. My legs flare up the most dramatically when they touch each other and that means always staying fully clothed, top to bottom.

Clothes! Another huge frustration. Everything has to be smooth soft cotton, fit but not tightly so it doesn’t shift but doesn’t constrict, no elastic waistbands since the indents from waistbands just provided new tracks for new rashes. I own exactly two shirts that suit and have been trying every pair of pants and shorts in the house to no great success.

COPING

After ten days of trial and error, amid increasing desperation, I’ve found that I can at least sleep if I keep flipping over to the opposite side every 15-30 minute like a rotisserie chicken and “baste” myself with ice packs, tucking them into the sides that have accumulated warmth since the last flip. It means very short naps rather than actual sleep but it’s still better than sleep madness of working and functioning on 1.5 hours of sleep a day.

During the day, I sit incredibly awkwardly on piles of blankets covered with cotton sheets to protect myself and the furniture and am VERY aware of how long I’ve been sitting because of the pressure issue. It stinks.

And of course the regular pain hasn’t let up so I get this great combination of itching+pain+fibro pain and swelling. If I thought I knew what feeling helpless and useless was like before? Sure didn’t.

PiC has had to help me with the most basic of life functions, not just cooking but sometimes feeding me when the swollen from pain and swollen from rash hands were particularly bad. He’s learned the art of applying lotion evenly and keeps me supplied with fresh icepacks day and night.

Normally, by the time I write up something like this, I’ve achieved some sort of sense of positivity but nope. Not this time. Doing the best we can but mostly just trying to get by and leaning way too much on PiC. Poor guy.