The house is deafeningly quiet, and the mess is strangely sessile. Dross just languishes there dolefully. Never shifting. Never scuttering across the room, or into the trash, or out the door. Just glowering at me as it punctuates the stillness and absence haunting my little domicile.
Yes, I'm having my very own Home Alone moment this weekend.
AAAAAAAAAAAAAAAAAAA
Except instead of being left behind in my bed (is that how it played out? I haven't seen the movie in years), I seem to have gone all the way down to the airport with the rest of my family. And then to have driven home. Husband blindsided me by very rationally choosing curbside check-in when we arrived at the airport. I had this whole mental image of drifting through the airport. Waiting in line with my family as bags are checked. Bowing kisses and waiving to them in the security line. And sipping a cup of tea at the terminal while waiting for news the flight had taken off. As I moved the stroller onto the sidewalk in preparation for some kind of goodbye, he looked concerned and barked something about not abandoning his car... But but but car versus mommy!! I did manage to kiss them goodbye, get into his fancy car and drive it back home with only an occasional sob.
First, preschool (incidentally going so well, we're planning to increase her days to twice a week!). Now weekends in Tahoe. Soon, Chayas going to be moving to Albania to study circus craft. She does like elephants.
I managed to drive home. I had a little snack (Papaya and almond butter for the win). Now I'm walking on the treadmilly trying not to immediately gather my leaf blower and fight back the disembodied clutter.
And thus time for a plebian personal update mixed with a peppering of whinging and a whee bit of merriment (so we hope).
So, I left off with a season finale cliffhanger there. Not eczema!
Raynaud's! Somehow! We're not sure! Plot twist. DUN DUN DUUUUUN. I wouldn't say we're quite at the Season Premiere here, but there's the inevitable drift through the off season.
I have a rheumatology appointment on the 21st. February 21st. This is actually extraordinary. As I have spluttered before, I highly recommend demanding referrals to any and every conceivable specialist immediately. Even if you cannot possibly conceive of a reason you may need to see this person, just get the referral.
By the time they can actually see you (roughly two years from now give or take) you may in fact need them. And if not, well... you can cancel and reschedule for another two years out, I'm sure.
Rheumatology wasn't SO bad for that. It's been about 3 weeks since the Dermatology appointment. Most clinics only had spots available at the end of March. This "early" appointment is due to a combined effort of my doctor juicing up the urgency in her post-referral questionaire and to a cancellation by a prior patient. It turns out to conveniently occur exactly during Chaya's preschool time. Life is amazing sometimes. I don't expect ot have a ton of answers, but there are some things I specifically know to ask about and to expect now. And I think it will be helpful.
In the interim, hormones have entered the body, folks. I'm pretty sure, anyways. I no longer need to strip down to a bikini and ice my ears when a house is above 65 degrees. And I sometimes even manage to sleep underneath the sheets all night long! In fact, I'm often even kind of cold. Which is good and bad. It makes it less painful to keep my hands warm. It does seem to also make my hands slightly more prone to pruning. I haven't completely stopped having warm ears or flushing, but they are less severe and way less frequent. I can actually walk on the treadmill in the basement without feeling nauseous.
There are side effects. My ankles are a little swollen. I had a few days of headaches. There is cramping from time to time. Hard to finger causality precisely, but at three weeks in, I've developed some pretty vigilant reflux. Not straight heartburn, but the fullness, difficulty swallowing, and sore throat that's even more fun. Yes I'm taking antacids, eating small meals, avoiding traditional triggers (though man my usual diet is one big globule of triggers, gently exercising, and not eating before bed. .
I'm currently sleeping with (1) a wedge pillow, (2) another couple underneath that, and (3) a boppy pillow to help me sleep a little more on my left side despite a pulled pectoral muscle. So yes, I know the usual tricks. There is so much contradictory stuff about managing reflux, but right now I'm enjoying a diet of papaya and herbed tofu and trying desperately to identify triggers without plunging into any particular potential triggers.
And then there are my hands. They still look awful up close, but they are admittedly a lot better. I have been keeping them a little more even keeled with a mix of hand/foot warming pads, mittens, gloves, and warm water (finally). I randomly wave my arms around in windmills (helps bloodflow). And tuck them constantly between my armpits. I wear gloves to open the fridge and pre-heat vegetables in the microwave before cutting them. It mostly works.
The burning and swelling is significantly better. And they occasionally hit a normal color. The blisters seem to largely be receding, though I think a few coldblains form here and there. This morning I put handwarmers in my mittens and think I got a little burn on my pointer finger. It goes on. They still go between white and freezing and red and burning, but it's a different kind of burning. More of an internal throbbing. I can (again) actually gently treadmill without them totally blazing up. They get warm and irritable but nothing like before. This is miraculous.
Rheumatology wasn't SO bad for that. It's been about 3 weeks since the Dermatology appointment. Most clinics only had spots available at the end of March. This "early" appointment is due to a combined effort of my doctor juicing up the urgency in her post-referral questionaire and to a cancellation by a prior patient. It turns out to conveniently occur exactly during Chaya's preschool time. Life is amazing sometimes. I don't expect ot have a ton of answers, but there are some things I specifically know to ask about and to expect now. And I think it will be helpful.
In the interim, hormones have entered the body, folks. I'm pretty sure, anyways. I no longer need to strip down to a bikini and ice my ears when a house is above 65 degrees. And I sometimes even manage to sleep underneath the sheets all night long! In fact, I'm often even kind of cold. Which is good and bad. It makes it less painful to keep my hands warm. It does seem to also make my hands slightly more prone to pruning. I haven't completely stopped having warm ears or flushing, but they are less severe and way less frequent. I can actually walk on the treadmill in the basement without feeling nauseous.
There are side effects. My ankles are a little swollen. I had a few days of headaches. There is cramping from time to time. Hard to finger causality precisely, but at three weeks in, I've developed some pretty vigilant reflux. Not straight heartburn, but the fullness, difficulty swallowing, and sore throat that's even more fun. Yes I'm taking antacids, eating small meals, avoiding traditional triggers (though man my usual diet is one big globule of triggers, gently exercising, and not eating before bed. .
I'm currently sleeping with (1) a wedge pillow, (2) another couple underneath that, and (3) a boppy pillow to help me sleep a little more on my left side despite a pulled pectoral muscle. So yes, I know the usual tricks. There is so much contradictory stuff about managing reflux, but right now I'm enjoying a diet of papaya and herbed tofu and trying desperately to identify triggers without plunging into any particular potential triggers.
And then there are my hands. They still look awful up close, but they are admittedly a lot better. I have been keeping them a little more even keeled with a mix of hand/foot warming pads, mittens, gloves, and warm water (finally). I randomly wave my arms around in windmills (helps bloodflow). And tuck them constantly between my armpits. I wear gloves to open the fridge and pre-heat vegetables in the microwave before cutting them. It mostly works.
The burning and swelling is significantly better. And they occasionally hit a normal color. The blisters seem to largely be receding, though I think a few coldblains form here and there. This morning I put handwarmers in my mittens and think I got a little burn on my pointer finger. It goes on. They still go between white and freezing and red and burning, but it's a different kind of burning. More of an internal throbbing. I can (again) actually gently treadmill without them totally blazing up. They get warm and irritable but nothing like before. This is miraculous.
Of course, the reflux now makes me ever less inclined to do any true cardio, so it's long uphill walking in the basement for me. I did get a run in between hand blight and reflux. It felt good.
But as I said, they still look ravaged. I can't really tell if they are just so totalled from an untreated winter of misery or if there's actual skin changes from something more underlying.
Which leads to my current mental game. The What's Wrong With Adella Pool!
In my odd balance between hypochondria and self-negligence, have a few other odd symptoms that I never really think much about, but actually are pretty prominent: (1) really dry mouth. This is probably part of why I drink so much water and chew so much - I thought it was a side effect of taking antihistamines, but I haven't taken any in a long time now and my mouth is really dry. This may also be contributing to the reflux incidnetally. (2) Dry eyes. There's a family history of this and I had LASIK, but it's getting more noticeable). (3) Occasional tingling in hands and feet, which may well be muscular and my PT is giving my plenty of stretches. It may also be Raynaud's related, since that's a common complaint. (4) Dry splotchy skin. With red all over my face that's also pretty par for the Irish family flushing course...
Why wait for a professional to flub my diagnosis when there are support groups AND google?
I am my own episode of House, M.D. Remember it's not Lupus. It can't be. Thanks for playing. Amusingly, it actually could be Celiac, though it isn't a perfect fit.
Not really, but I do have these migrating working theories. Biggest odds are on:
1. Scleroderma
But as I said, they still look ravaged. I can't really tell if they are just so totalled from an untreated winter of misery or if there's actual skin changes from something more underlying.
Which leads to my current mental game. The What's Wrong With Adella Pool!
In my odd balance between hypochondria and self-negligence, have a few other odd symptoms that I never really think much about, but actually are pretty prominent: (1) really dry mouth. This is probably part of why I drink so much water and chew so much - I thought it was a side effect of taking antihistamines, but I haven't taken any in a long time now and my mouth is really dry. This may also be contributing to the reflux incidnetally. (2) Dry eyes. There's a family history of this and I had LASIK, but it's getting more noticeable). (3) Occasional tingling in hands and feet, which may well be muscular and my PT is giving my plenty of stretches. It may also be Raynaud's related, since that's a common complaint. (4) Dry splotchy skin. With red all over my face that's also pretty par for the Irish family flushing course...
Why wait for a professional to flub my diagnosis when there are support groups AND google?
I am my own episode of House, M.D. Remember it's not Lupus. It can't be. Thanks for playing. Amusingly, it actually could be Celiac, though it isn't a perfect fit.
Not really, but I do have these migrating working theories. Biggest odds are on:
1. Scleroderma
Basically a condition involved with overproduction of collagen/scarring in place of healthy tissue. It usually manifests on the skin, hence the name. But it doesn't always have skin manifestations. Depending on the kind, it can be pretty local or it can hijack an entire body. A bit of a grab bag but it explains a disturbingly complete scan of symptoms. Limited scleroderma (once called CREST, because it is so minty clean) is diagnosed by presence of 3 of 5 symptoms: Raynaud's, skin tightening/puffiness/shinines, reflux, spider veins, calcinosis. I've got Ray's, have reflux. and my hands are weird AF these days. Calcinosis, not so much, but there we go.
It also can some sometimes lead to dry mouth and eyes and skin, though it isn't the most common symptom.
The systemic version is very scary but every diagnosis varies considerably.
Doubt on this bet: I tested negative on my autoimmune antibodies test and my sed rate (inflammation marker) was normal. And there are plenty of symptoms I don't have. That said, it should be mentioned that the autoimmune antibodies that my doctor did run has a 40% false negative incidence, not to mention some people don't have the antibodies. So, still a pretty good bet considering how varied it can be and how funky my hands are.
2. Sjorgren's Syndrome - A funny one that largely causes dry eyes and mouth. Swollen lymph nodes (I'm always sightly sick so who knows, but doctors always ask if I'm sick) are somewhat common. And Raynaud's. And dry skin or rashes.
It can also be comorbid with scleroderma out any other number of autoimmune diseases, so really this could be more of a complementary diagnosis than a standalone!
3. Just crazy hormones having a super tough time with any other number of bodily oddities - Occam's Razor mofo!
Dry mouth is idiopathic and exacerbated by birth control, dry eyes are hereditary and exacerbated by LASIK and birth control, dry skin is dermatitis and birth control, horrible hands are a massively bad case of poorly cared for chilblains, reflux is common and... exacerbated by the birth control.
...
Or it could be something I haven't even imagined. Some combination of hormonal stuff, chilblains and dermatitis run amok stress and some other random disease.
Regardless, there isn't a sense of certainty in the future under any circumstances. None of the likely conditions have cures or definitely predictable courses. It's likely that there are no magical cures.
If I still have reflux in a few weeks, I can try a new birth control pill. My hands may or may not clear up. If I have scleroderma, it may or may not progress much. If I have sjorgren's there are some treatments that probably aren't much different than what I'd already seek out. There are medications that may or may not work. The usual.
It all could be very bad very good, or very "that's life ... and then you actually die from a car crash after totally recovering from some far more heroic fight with disease."
I'm actually not too spooked yet, but because the first two are tricky to diagnose and really benefit from early intervention, I'm trying to stay informed. Next step is for a rheumy to look at the capillaries in my finger. If they're all screwy, then on we go. If not... See Option 3.
And minimize symptoms anyways.
Since the toddler is not present I plan to have a nice mellow grown up diet free of the cheesy ravioli she is insisting on shoving into my mouth (and or my eye). Drinking some mellow water. Destressing. And ... ok I am going to flame thrower the rest of the house soon. Really I'll resist only so long. But then? Maybe a movie? Do they still make movies? Do people watch these?
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