And, as always, I'm still alive! And not currently living with any diagnoses except Raynaud's, odd-body-syndrome, and probably some kind of all purpose psychological label involving the words "neurotic" or "generalized anxiety"
Chaya and Andrew had a great time tromping around in the mountains. As I was not there Chaya was vergingly angelic on the plane ride. She was intimidated by the dog but also delighted. She tromped in snow. She took her naps and slept at night (or so Andrew thinks, but then again I've seen how much he can sleep through, so who knows what wild nonsense she got up to once he was in bed!) And she didn't universally reject me upon her return. In fact, little changed in our relationship, although I think maybe she and Andrew have a little more confidence with each other now. And no doubt Andrew is further convinced that I am either (1) making up some of the wearing joys of primary parenting, or (2) bringing out Chaya's most demanding and boisterous side. Guilty as charged I'm sure on the latter, but that is the world of primary parents. Really.
And, after various spells of wallowing and Dr. Googling myself, I mellowed into a pretty jammin' routine of eating moderately, walking, wandering, and watching two of the millions of comic book movies I've missed in the intervening years since childbirth. The last film I watched in the theaters was Avengers 2 (which nearly triggered premature labor at the time). Then I visited my own parents, ate moderate and safe foods, and packed up some more of my stuff from the old house that my mom is just about to sell.
I also moved onto my first round of the sugar pill phase of my new birth control. Lo and behold, my body decided to menstruate (TMI, my toosh - you've been through oh so much of the nitty gritty, this barely scratches the surface). I surely thought it'd forgotten how to do that! Even Dr. Cho was selling birth control as a great option in terms of never having to have a period again (given my history). Ah well. This becomes challenging since Chaya has a magnetic attraction to maxi pads (stuffed animal diapers basically) and bandaids. We never have either readily available for use in the home, despite them typically being scattered every which way like tinsel on a tree. But it's still heartening to know my body occasionally does things it's "supposed to."
And so, things continue. Kids came back. We had a reunion with Chaya's besties from way back at a nice Mexican restaurant a week ago. I got a haircut this week. We live exciting and crazy lives!
Chaya's about to up her preschooling to twice a week. She enjoys it so much (and I have so many
darned appointments to keep up with, that it's becoming necessary at this point!) There was some confusion about which day and how to coordinate, but I finally just decided to drop her off today. I think they would take her every day if I weren't too dilatory about compensation.
And...
Last week I had my long awaited appointment with a rheumatologist. We're still waiting on bloodwork, but based on a physical exam and family history, she is skeptical that I have an autoimmune disorder. She investigated my hands for signs of "pitting" and ulcers (common with secondary Raynauds) and did a nailfold capilloscopy, which also suggested my capillaries were normal. She was bemused at a faint orangey hue, but finally speculated that it was likely something to do with eating a ton of carrots and squash (actually this is plausible based on a list of foods people might eat to acquire caratonemia She thought my face had a redness but nothing malar (lupus butterfly rash).
I went through my long list of symptoms and she bandied them back at me:
1. Raynaud's, vasovagal syncope, flushing face and skin, peripheral neuropathy, benign palpitations... are all under the control of the autonomic nervous system. believes they're related. Didn't call it dysautonomia exactly, but suggested I may learn to control these parts of my body through a practice of biofeedback or meditative practices like Qi Gong. She said it would be interesting to see how longer term use of birth control might affect things. Boy is my life always "interesting," particularly to medical professionals.
2. Dry mouth. She agreed my mouth was dry and that there weren't really any medications to blame. But she also didn't think it showed signs of sjorngren's level of dryness or the associated damage.
3. Dry eyes. This one was an easy bandy since I have a family history of dry eye syndrome and have had LASIK. .
4. LPR (silent heartburn symptoms that include constant hoarseness, throat pain, lump in throat, difficulty eating, etc). She said that was fairly common among the population, and not a huge sign of autoimmune dismotility in and of itself. She recommended enzymes and dietary modifications. She also suggested going back on Claritin as allergies have some overlap.
5. Other stuff: hormones and thyroid and not her wheelhouse, but "interesting".
6. Aches and pains. Not joint or connective tissue related as much as sciatic or the like.
So, pending a blood test, I'm more or less back on my own for a bit. But I ain't done with the specialists here.
I am seriously considering consulting an accupuncturist who also offers private qi gong instruction, since I do know that she takes insurance and it has a decent track record of helping. It's amazing I've lived in Bellingham and Mt Vernon so much and yet never seen one at this point.
I am also still waiting on a neurology appointment in several more months, which may or may not be relevant (Raynaud's IS a neurovascular issue, and autonomic nervous system functions are neurological...)
And then there's the miserable reflux. I think I will try changing birth control next cycle, since this seemed to be contemporaneous, but I'm not sure if it will help. I may also consult an ENT or have other testing to see what the balance is between mechanics, hormones, allergies and whatnot.
LPR, if this is what it is, is a special form of reflux. It's harder to see the direct cause and effect, but I can tell that if I eat quite a few of my favorite things, or if I eat much at a time, OR if I eat anywhere near bedtime, it sucks. I get mucusey. I feel a little food creeping back up or just have a difficult time swallowing. My throat suddenly gets sore if I lean forward or backwards. And eventually it turns into post nasal drip. I have read some fairly credible consensus that this is triggered off by acid reflu aspirating up very fast and bringing pepcin (a digestive enzyme) into the nose/throat/larynx, and mouth. The reflux is probably due to a loose valve somewhere, but once it happens, it's a self-perpetuating cycle. Pepcin stokes the acid and feeds on acidic conditions. It slowly dies in alkaline environments.
That's part of why acid blockers are often useful BUT the really effective ones (PPIs) (1) have a crappy efficacy with LPR, (2) totally screw with the stomach's ability to absorb several vitamins and minerals. Huge risk of deficiencies and osteoperosis, which I'm already at risk for. And there's a dependency and rebound effect that makes it harder and harder to get off of them. It's still an important intervention but not one to be taken lightly.
I've also seen some peer reviewed studies that dietary interventions (Mediterranean diet and alkaline water) were technically more effective than PPI use. So while we wait to see how things pan out, I'm watching my diet again, at least as much as it is limiting me.
It's really a bummer here. I finally manage to get out from the lode stone of being underweight. Break some of my orthorexic tendencies and get to a place where my body actually seems to do things like "respond to hormones". And now I can't eat much at once or much of anything without some serious punishment.
There are a handful of different "GERD/LPR Diets" out there. (GERD is the medical term gastroesomethingsucks reflux disorder - e.g. "frequent heartburn and other reflux issues"). Every case is idiosyncratic and every sufferer has different triggers. It's harder to figure those out with LPR, so it can be helpful to have a really minimal diet of generally safe foods and then slowly reintroduce other foods to get the trigger.
As I've said, there's credible research that a low acid diet might help to heal the acid damage of LPR, particularly. There are two major takes that approach it from this angle. One is called Dropping Acid, started by an ENT who pioneered a lot of research into Silent Reflux. The competing "low acid" version is called Acid Watchers, also concocted by an ENT several years later with a little updated research.
They both have a "healing phase" in which the patient eats only foods above a PH of 5 (and avoids other known triggers) and then a phase in which you work things back in. They differ in the nitty gritty.
They're both very healthy diets, except that they may come a bit from the assumption that people with reflux could benefit from losing weight and probably were eating 3 bigger meals a day. Revolutionary to move up to a whole 6 times a day! Given how little I can eat at a time, that is NOT enough. In fact, many people I've spoken with feel that their difficulties eating have caused them to drop weight. And it's challenging to get enough food, given it all takes preparation time and money.
There's a third one that's particularly cultish, called Fast Tract Diet. This was developed by a microbiologist to treat something called SIBO, but he's expanded his opinion to credit heartburn with this as well. It's all a very complex algebraic take on the Low FODMAPS diet (on steroids). His theory is that it's all about how fermentable foods are. Food ferment in the stomach and that feeds SIBO, which in turn causes every kind of woe. Basically it includes a ton of common trigger foods and it low carb. People swear by it, but it scares me. Oatmeal and bananas are bad? Really?? In fact it's kind of nuts in terms of how little fruits/veggies/whole-grains one can have. Seriously, Wonder Bread is more highly recommended than oats. And it's super high fat.
There are also more generalized diets. The common sense stuff is semi-based in science, but not super well reviewed.
I'm loosely following the Acid Watcher Diet, but I think there's a dizzying degree of whooo in it.
Of course there may well be some underlying intolerance or allergy going on. I definitely have allergies generally. And there are connections. But of course I have no idea what they are and how they interact.
Or this. Because every support group for any medical condition has one of these (this is a poster who posts almost the identical comment on EVERY SINGLE post from a new user).
"Just a bit of information. Raynaud’s is often the first sign of an impending autoimmune disease invading your body. Yes, dress warmly and keep your core warm, but while you do that and live your life, leaky gut has done a job on you and invited disease to take hold. It might be lupus, Scleroderma, Sjogren’s, arthritis or a gut issue, but it will be something. I’m living the lack of knowledge...ha you have Raynaud’s so keep warm. Well I am now in possession of 5 autoimmune diseases. Read all you can because you can stop this in its tracks and just deal with Raynaud’s by removing all wheat, rye and barley from your diet. Are you celiac because that is one major way leaky gut gets started. Get tested because if you have it, so does your family and they too will have issues but they might be different from you and none of them could be gut related. Read...read. I like The Autoimmune Fix by Dr Tom Obryan and his site TheDr.com. Leaky gut comes from eating inflammatory foods and can only be fixed by removing all 100% of those foods and that’s not just bread and cookies, but hidden foods like soy sauce and bouillon, barley is beer. I can say this because I have done the research and I just want to let you know there is an answer. It’s not easy at first, but it’s really not easy battling sickness that takes your life away. Give it 3 weeks to see some beneficial change.
So, I totally disagree on so many counts, but actually some of my symptoms could indicate Celiac by modern research, so I may ask about that and if things don't clear up I may consider a FODMAP style phase to figure out if anything is triggering me.
In the meantime I'll be "doing the research" and/or staring at Facebook while trying to figure out what I can give to Chaya that she'll actually eat that WON'T be problematic when she then decides she'd rather feed me the rest of her meal.
No comments:
Post a Comment