And I return to the house with a child who happily joined the Play-Do table at preschool (after a morning of saying "no" and wanting to return to the crib). Parenting accomplished for at least the morning.
Time to update the world on the exciting world of me oh my... It was a very exciting week in the endless health rollercoaster of Adellalandia.
I used to be healthy! Really. I was in great shape. My health stats were all splendid. Feel a bit like a switch got flipped at some recent point and I'm one big Jenga tower absent a structural piece. Don't get me wrong: I'm still pretty lucky. I can run around the house for hours carrying my 33 pound writhing toddler, then let her climb on my head, before tumbling into some airplanes. But it is often a big limiting question-mark on my of my many challenges.
This next month, even, Andrew and Chaya are going on a trip together without me. While in theory, I think this is a very good thing for daddy-daughter bonding etc,
I guess I wasn't totally emotionally ready to be left behind. Sure travelling exhausts me and I'm always initially resistant, but over all I want to be there. This year, I just can't. Andrew asked what I was going to do with all my free time, and my first response was something like "let my guard down and spend the weekend feeling sorry for myself."
No no, I'm sure I'll rally. I may do wild things like watch an entire movie, steam clean the bedroom, and ... more movies. But I'm still mad at my body right now. And I feel bit of a quiet fear that I'll become less and less able over time. That Chaya may not remember her wild and athletic mommy. So that alone is motivating me to cross my t's and dot my i's and see if I can get some kind of equilibrium going on.
First things first: I now have hormones coursing through my body. Last week, I met with my reproductive endocrinologist. Amazingly she remembered me in impressive detail (the boom bust of ovarian responsiveness leaves an impression I guess and she continued to marvel that we didn't end up with multiples worthy of a reality tv show). She laughed when I said I hadn't started birth control yet, but was taking a whole standard dose of estradiol. Apparently this is akin to a dropper in the empty ocean for me. Nothing much I said surprised her, except when I asked about my flaming red ear.
After some discussion it came down to this: I could go on hormonal replacement therapy with very high doses of dermal and suppository hormones, possibly provoke monthly periods, likely not start ovulating again but still have to be careful because HRT and pregnancy do not mix; OR I could immediately try to get pregnant again using the full arsenal of ART (with no guarantees of last time's luck and definitely a big risk of multiples given how I reacted last time); OR I could take birth control the rest of my pre-menopausal life and call it good.
First things first: I now have hormones coursing through my body. Last week, I met with my reproductive endocrinologist. Amazingly she remembered me in impressive detail (the boom bust of ovarian responsiveness leaves an impression I guess and she continued to marvel that we didn't end up with multiples worthy of a reality tv show). She laughed when I said I hadn't started birth control yet, but was taking a whole standard dose of estradiol. Apparently this is akin to a dropper in the empty ocean for me. Nothing much I said surprised her, except when I asked about my flaming red ear.
After some discussion it came down to this: I could go on hormonal replacement therapy with very high doses of dermal and suppository hormones, possibly provoke monthly periods, likely not start ovulating again but still have to be careful because HRT and pregnancy do not mix; OR I could immediately try to get pregnant again using the full arsenal of ART (with no guarantees of last time's luck and definitely a big risk of multiples given how I reacted last time); OR I could take birth control the rest of my pre-menopausal life and call it good.
Given Chaya's tendency to sob whenever I touch another baby, and her many sneak attacks on Daddy's reproductive organs I can kind of guess that Chaya is gonna be ok with being an only child.
It was a bit of a mental adjustment for me. We'd talked often about expanding our little family "god willing" (in other words, if it happened, it happened, but that I couldn't go through the full ovulation induction carousel with a toddler. I suspected it might not be possible but I liked the idea of keeping the option open. Nonetheless, birth control is the best option and considering the hormonal craziness that pregnancy, breastfeeding and weaning wreaked on my body, I'm not sure I could survive a second go around of that anyways.
It's a little early to say much about the pill I'm on. I guess it can take some time to find the right match. It also takes about 3 months to really know how it will sit with somebody. I may be a little less prone to overheating so far. Which is good because...
All that eczema stuff? After 3+ months of doing my best with "hand eczema" waiting for a dermatologist to confirm and help already, I finally had my appointment. The dermotologist took one look and says "this is because of your Raynaud's. You need to see a rheumatologist or a vascular specialist. I don't think you need a referral with our insurance. Take care."
It was a bit of a mental adjustment for me. We'd talked often about expanding our little family "god willing" (in other words, if it happened, it happened, but that I couldn't go through the full ovulation induction carousel with a toddler. I suspected it might not be possible but I liked the idea of keeping the option open. Nonetheless, birth control is the best option and considering the hormonal craziness that pregnancy, breastfeeding and weaning wreaked on my body, I'm not sure I could survive a second go around of that anyways.
It's a little early to say much about the pill I'm on. I guess it can take some time to find the right match. It also takes about 3 months to really know how it will sit with somebody. I may be a little less prone to overheating so far. Which is good because...
All that eczema stuff? After 3+ months of doing my best with "hand eczema" waiting for a dermatologist to confirm and help already, I finally had my appointment. The dermotologist took one look and says "this is because of your Raynaud's. You need to see a rheumatologist or a vascular specialist. I don't think you need a referral with our insurance. Take care."
No no in fairness, she prescribed a steroid of questionable efficacy (I only used it a couple of times and it burned)
Seemed odd given I've had what I've presumed to be Raynaud's for years with nothing remotely resembling "deep pain and itching upon getting the slightest bit warm."
Seemed odd given I've had what I've presumed to be Raynaud's for years with nothing remotely resembling "deep pain and itching upon getting the slightest bit warm."
For the uninitiated, Raynaud's is a condition in which smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas and cause vasospasm. It's best known for a finger or toe or several appendages suddenly turning white, puckering, and losing sensation. Then it throbs. In general, there's some association with just crap-ass circulation to hands and feet, so hands and feet tend to be cold and often kind of purpley or blue.
It all just seemed so weird. I've had "Rays" as long as I can remember, and it's certainly been "worse" before. When I was a teenager, I remember turning blue up my arms on a cool day in Morocco. My travel companion was quite unnerved but it appealed to some emo part of me. In law school in particular, I had the dreaded white finger of doom on a fairly frequent basis.
I've had one pale finger this year. Otherwise, not much. My hands and feet are always cold, sure. I can't sleep most nights without electric slippers.
It all just seemed so weird. I've had "Rays" as long as I can remember, and it's certainly been "worse" before. When I was a teenager, I remember turning blue up my arms on a cool day in Morocco. My travel companion was quite unnerved but it appealed to some emo part of me. In law school in particular, I had the dreaded white finger of doom on a fairly frequent basis.
I've had one pale finger this year. Otherwise, not much. My hands and feet are always cold, sure. I can't sleep most nights without electric slippers.
But with the rest of my body overheating like crazy, I guess I didn't mind or notice any cold hands. And as soon as this whole rashy discomfort broke out over my body, my hands would just kind of inflame on the slightest provocation. I still wake up in the middle of the night with my entire body radiating heat.
It being late Friday afternoon and all the possible medical professionals who might have helped no longer being in the office, I did some research of my own (do your research SHEEPLE!!!) I joined a Facebook support group and posted pictures of my hands with a WTF?
Turns out there's something called chill blains (or oh so pernicious pernio). These delightfully named medieval scourges purportedly happen a lot to people with Raynaud's - horrible painful inflammation and cracking and blistering that happens when skin goes from cold to warm too quickly.
They don't look too bad when my skin has some normal temperatures going on, but they're disturbingly purple when my hands are cold, and nasty and red when my hands are warm
I could well also have a localized form of scleroderma, based on some pictures (the autoimmune artist formerly known as CREST) - or any variety of fun autoimmune disorders that wouldn't necessarily have shown up with the autoimmune testing I already have had done - but we'll stay with the chill blains and being a big fat pain for now.
I still do have mild dermatitis. Or at least scratchy and dry skin. And in some ways the treatments are similar: avoid extreme temperatures, moisturize frequently, reduce stress, don't scratch, keep a watch for infections.
It being late Friday afternoon and all the possible medical professionals who might have helped no longer being in the office, I did some research of my own (do your research SHEEPLE!!!) I joined a Facebook support group and posted pictures of my hands with a WTF?
Turns out there's something called chill blains (or oh so pernicious pernio). These delightfully named medieval scourges purportedly happen a lot to people with Raynaud's - horrible painful inflammation and cracking and blistering that happens when skin goes from cold to warm too quickly.
They don't look too bad when my skin has some normal temperatures going on, but they're disturbingly purple when my hands are cold, and nasty and red when my hands are warm
I could well also have a localized form of scleroderma, based on some pictures (the autoimmune artist formerly known as CREST) - or any variety of fun autoimmune disorders that wouldn't necessarily have shown up with the autoimmune testing I already have had done - but we'll stay with the chill blains and being a big fat pain for now.
I still do have mild dermatitis. Or at least scratchy and dry skin. And in some ways the treatments are similar: avoid extreme temperatures, moisturize frequently, reduce stress, don't scratch, keep a watch for infections.
Interestingly, Raynaud's is actually a bigger problem when it's cool and damp than when strictly gelid. Eczema often improves with a more humid environment, but not so much the risk of chilblains. And wet wraps are great for bad flares of dermatitis but probably increase the risk if Raynaud's flare up and chilblains. Whoops. All those lukewarm baths I was taking in a cold bathroom to simultaneously cool down my flushed face and help my itchy skin probably weren't helping, given the purpleish hue they always provoked.
Chilblains burn something fierce and get worse as the skin gets warm. My natural reaction to burning is to try to numb and ice the inflammation. Many days of running my hands under cold water or straight out icing. At a certain point I was getting these nasty red spots on my fingertips exactly where I'd been gripping an ice pack to sooth myself.
Chilblains burn something fierce and get worse as the skin gets warm. My natural reaction to burning is to try to numb and ice the inflammation. Many days of running my hands under cold water or straight out icing. At a certain point I was getting these nasty red spots on my fingertips exactly where I'd been gripping an ice pack to sooth myself.
Anyways, my hands still look pretty unhappy, but I've been working on keeping them warm and limiting temperature fluctuations. I'm hoping at least this knowledge can help mitigate future outbursts while I wait my next interminable period for a rheumatologist to see me. I'd say things are moderately improving since last week, but the flare ups were always a bit cyclical, so we'll see.
Although I am probably a Primary Raynaud's sufferer (as in I've had it forever and probably it isn't just a side effect of something else), there's also a chance that a scarier autoimmune disease lingers undiagnosed. Let the clock start again on waiting for answers to that one. It still confuses me that I've had so many bad spells of these this year over other times when the Raynaud's was more active or severe.
In a sense, it is a weird relief that all this misery might actually be something I have had forever. If it makes any sense, I still blame myself for the wonky hormones. I don't know that this is fair, because somewhere in there is a genetic and physiological component to how my brain and body reacted, but the combination of over-exercising/under-eating for so many years and then messing with those hormones to give birth/breastfeed... seems like a no-brainer that I broke myself on those grounds.
Although I am probably a Primary Raynaud's sufferer (as in I've had it forever and probably it isn't just a side effect of something else), there's also a chance that a scarier autoimmune disease lingers undiagnosed. Let the clock start again on waiting for answers to that one. It still confuses me that I've had so many bad spells of these this year over other times when the Raynaud's was more active or severe.
In a sense, it is a weird relief that all this misery might actually be something I have had forever. If it makes any sense, I still blame myself for the wonky hormones. I don't know that this is fair, because somewhere in there is a genetic and physiological component to how my brain and body reacted, but the combination of over-exercising/under-eating for so many years and then messing with those hormones to give birth/breastfeed... seems like a no-brainer that I broke myself on those grounds.
But Raynaud's? Well dude it's crappy as all heck, but it's just part of who I am. Hi I'm Adella. I'm a vegetarian, I can't make a decision to save my life, and my hands don't really get much blood to them!
I imagine I've had chillblains before and written them off as dermatitis in the past. If there's a quiet auto-immune issue that didn't make itself known until now, I've probably had that since childhood too, since Raynaud's can predate AI symptoms by 20 years. Naturally I've been laying my bets for what I could have or not. I vote for Lupus in homage to Dr House, M.D. Whatever it is, it is nice to have a name to put to a constellation of annoyances that generally fall under "wonky body syndrome." It's fascinating to learn more from other people with Raynaud's.
Apparently that bizarre flaming ear thing is not unique in the Raynaud's world. Or the constant fluctuating between too hot and too cold in the vulnerable places. Some even mention really random symptoms I'd never thought of before. Including some tingling and other scary sounding symptoms that I'm still getting checked out.
I'll be keeping toasty in style and hoping flame face and flame ear will subside as I make the effort to stay generally warmer.
In the meantime, I didn't have enough gloves in my menagerie, so let's add some toastie hand warmers for typing, and a couple of pairs of refrigerator and freezer gloves to the mix.
In the meantime, I didn't have enough gloves in my menagerie, so let's add some toastie hand warmers for typing, and a couple of pairs of refrigerator and freezer gloves to the mix.
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