Roller Coaster Ride

So, the more I learn, the more I need to know, and the more complicated it gets.

Over the last two months or so, I’ve been through a bad cycle that I believe was touched off by starting the Armour Thyroid and not being dosed appropriately.  According to the “Stop The Thyroid Madness” website, staying too long at a low dose of NTH (natural thyroid hormone) causes a feedback loop:

STAYING ON A STARTING DOSE TOO LONG. The key to understanding this mistake is with the word “starting dose”. When first starting on any natural desiccated thyroid product, it can be wise to start on one grain or less, which is lower than you will ultimately need. Why? To help your body adjust to the direct T3. BUT, patients have found it UNWISE to stay on that low dose much longer than 2 weeks without raising. Why? Because hypothyroid symptoms can return with a VENGEANCE due to the feedback loop between the hypothalamus, pituitary and thyroid gland, i.e your hypothalamus gland senses the addition of desiccated thyroid (thinking the thyroid sent it), then sends a message to the pituitary gland, which in turn sends a message to the thyroid gland to stop producing, making you even more hypothyroid than you began.

Additionally, I never checked my adrenals or my ferritin.  Adrenal fatigue would explain some of the other bizarre symptoms I’ve been having. Again, per STTM:

THINKING YOU ARE ON TOO MUCH BECAUSE OF HYPER-SYMPTOMS Yes, a doctor can guide you to  go too high with desiccated thyroid and you’ll have hyper symptoms. You would then want to decrease your amount. But even more common is having hyper-like symptoms (anxiety, shakiness, fast heart rate, etc), especially on doses lower than 3 grains, because of underlying low-functioning adrenals (i.e. not enough cortisol), or even a low Ferritin—-each and/or both of which can be quite common in hypothyroid patients.

That sure sounds like the episodes I’ve been having.  It’s so hard to determine what’s going on, since so many of the problems have the same symptoms.  So now I’m stuck in nowhere land.  My last lab showed a low TSH and a high T3 which told my doctor I was on too much, and he told me to stop taking it.  I’m not seeing him til the 18th.  I’m exhausted, in pain everywhere, my brain isn’t working well, my throat is sore and I can’t swallow well, and my hair is falling out like crazy, and feels like straw.

I wish I could afford another doctor, but Medicaid limits me to only a few doctors in my area, none of which seem to have any open-mindedness about treating by symptom rather than the almighty TSH.  I’m gearing up for one more fight with this doc, to get the labs drawn including a salivary cortisol test, and maybe if I sign a waiver he’ll dose the Armour the way I ask him to.  If that fails, well, I don’t know what I’ll do.

Anyway, that’s enough about my health; I”m tired of talking about it, worrying about it, thinking about it. Next posts will be on more pleasant topics; the promised Easter egg dyeing, a bunch of knitting, my new website, and family stuff.  Might even get them posted before next month…

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What’s going on…

Mostly, I’ve been living.  I’m trying to pay more attention to everything, including what works and what doesn’t help my health.  I’m trying to track my symptoms, though I admit to being less than detailed. I don’t want to waste time on cataloging my life, I’d rather just live it.

I’m still having problems with the balance meme.  I’m not sure that balance in my activities is going to  be helpful.  I would miss too much.  I’ve spent the better part of the last few weeks pushing myself to do the things I want to do, then trying to allow my body some healing time.  It’s hard, but worth it.  What I do want to be very careful about balancing is making my pain burdensome on my family.  I don’t ever want to push myself to do something and then be so miserable doing it that I make my family miserable.  The Beloved says that he worries about me, but that I haven’t made myself a drag.  I hope that he will tell me if I ever do.

Resting in bed in my down time, I’m watching less TV, listening to more music and even just being silent and thinking.  Knitting, of course, when my hands don’t hurt too much.  Reading… I’m finding that I can read, if I take it in very small chunks.  I haven’t had the mental fortitude to do much blogging, obviously. What I’m finding right now is that I’m becoming more balanced internally.  Mentally, spiritually.  This is a Good Thing. I like who I am more, and I’m so appreciative of my life. Things are so hard financially that I’d expect to be going out of my mind, and of course, I’m concerned, but the non-material part of my life is so amazing, and so unexpected.  This is where my riches lie, where my priorities are.  I like where I am.  Finally, at the age of fifty, I’m becoming who I want to be, and I’m finding I’m stronger than I thought I was.

In the more mundane aspects of life:

It’s been really wet in Southern California.  Cold, and wet, right down to the bones, even for a New England girl like me.   Luckily, no big disastrous mudslides in the news, but it has been a tad inconvenient.  Witness the baseball field for Murphy’s game on Saturday.

This is the dugout.  The bench where the children sit is not visible; it’s underwater.  The parents worked really hard to sweep the field dry, pump out the dugouts, and get the field ready for play.  It was pretty amazing.

Unfortunately, this latest outing of the Padres didn’t go very well. They lost, badly.  It was so cold that just holding on to the ball was a challenge.  Hopefully, this weeks’ game will go better.

I started a new lace project. I have a love hate relationship with lace; I love how it looks, and I hate messing it up.  So I decided to try this scarf, which is a nice easy lace pattern so hopefully I won’t get lost.  I decided to dress it up a bit though, and it looks impressive to me!  I used a kid mohair yarn and decided to do a chevron shape beading which will repeat once or twice on the sides of the scarf.  Yes, it’s a six stitch, two row repeat, and I need stitch markers for every repeat.  I’m feeble.  =]

Oh!  And the desk!  The wonderful lucky desk that was dropped in my lap!  It finally made it into the room and is already accumulating piles.  The Beloved is amused.  He would prefer furniture to have no flat surfaces to collect crap.   Here are the photos:

I think my poor hands have had enough for right now.   My newest symptom seems to be tenderness of my palms and soles.  Today, either due to salt overload or the change in the weather (Saturday was in the 40’s, today was 90) my hands are swollen, itchy, and everything I touch seems covered with sandpaper. So it’s off to bed for me right now.

What a Day

Yesterday was quite the day.  My previous post detailed my morning; here’s how the rest of the day went.

After coming home, taking a pain pill and crying on the Beloved’s shoulder for quite some time and then posting, I stayed in bed the rest of the afternoon, because I really wanted to go to Murphy’s baseball game.  Got dressed, took a pain pill, got in the car to go with the Beloved and Murph, when we see Eric ride by on his bike. Yay!  He wants to come!  So we drop his bike at home and head for the ballpark.  It’s the happiest thing in the world for me when all four of us can do something together.  I was beaming the whole way to the game.

It was a great game.  Murphy played really well, and hit a line drive to left field that brought in two runners, to put us up 4-2.  Later, he made a great throw to try and get someone out at first; they were safe but it wasn’t Murph’s fault!  Eric even retrieved a stray fly ball, for which he received a free snow cone at the snack bar.  We ended up winning 6-5, and it was a great game to watch. It always amazes me; you hear so much about parents being bad sports and being horrible, but in our league everyone cheers, no one ever makes nasty or derogatory comments or anything. It’s a really fun, encouraging atmosphere. We brought our portable chair for me to sit on, since the bleachers put me in agony after about half an hour or so.  By the end of the game, I was feeling pretty sore anyway, but it was a great time.

On the way home, just out of the parking lot, I spy a desk sitting on the side of the road.  Now, you have to understand. I want a desk.  Badly.  I have no organized space to sit and do work.  I’ve been trying for a few weeks to find a way to get a desk, and then fit it into my already overcrowded room.  So I see this desk, and ask the Beloved to go around the block so I can look at it.  It’s perfect!  Not too big, nice drawers, a rolltop, which I’ve always had a thing for; and there’s a lovely sign on it that says “FREE.”  It looks like someone spilled nail polish remover all over the top, but I’m not here for the cosmetics, I’m after function, and everything else is fabulous!  I’m so happy I turn cartwheels in my mind.  We clear a space in the back of the van, and Peru, Eric and I manage to wrangle it in.  By now I’m in pretty severe pain, but again, I’m so happy I can’t stop grinning.  It made me feel like God was watching, saying, ok, you had a huge setback today, here’s a little something to lift you up.

We get home, and try to unpack it, which for some reason was much harder than getting it in.  But we manage.  It’s on the front porch right now, as I still need to find a space in my room.  Then it’s time for dinner; it’s almost 9 o’clock, we’re tired and starving. I am by this time in so much pain I can barely stand, but I stupidly promised Murphy mac n cheese for dinner, and when the Beloved tries to cook him fishsticks instead, well the tears in his eyes break my heart, and I start the water for pasta.  For good measure, I whip up some hummus at the same time, cuz it’s so easy, just throw the ingredients into the processor.  When the mac and cheese is done, I limp off to bed, in the worst pain I’ve ever had, I think. A solid nine on the pain scale. I take more pain med, and lay on the bed, unable to move at all for a good half hour or so.  The Beloved brings me dinner, but I can’t eat it for some time.  Even the thought of lifting a fork, or chewing, hurts.  I finally calm down to about a 7 or so, eat dinner, then go to cuddle and watch TV til I pass out.

It was quite a day.  Rollercoaster.  Today, I have to work on moving things around in my room to get the desk in; I sure hope it doesn’t rain soon because I doubt I’m going to be able to finish today.  I’m very tired and sore, and I keep fighting to find the words I want when I type.  And focus is hard; thoughts of things I need to do flit through my mind, but I can’t quite grasp them. Often, they float back again, and I remember.  Tomorrow, I’d like to try to work, if I’m able. Then, thank God, it’ll be the weekend, and the only thing I have on the agenda is another game on Saturday.

I’m so grateful for my family, for their love and support.  Murphy always asks me if I need a hug when I’m looking bad, and it brings tears to my eyes that he’s so sweet and thoughtful.  He even smiled after one last night, and said “You actually look better after I hug you!” He’s right, of course; love is a powerful medicine, as is touch. I’m fortunate to have plenty of both in my life.

I wouldn’t so much mind a diagnosis of depression, but I just feel like they can’t figure it out so they throw that label on so they can close the file, you know? I think that’s what I can’t convey to the doctors.  There’s sickness of the spirit/mind, and sickness of the body.   Even when I’m feeling awful, in pain, feverish, whatever; I’m happy. I love my family, I love being able to be with them; I love the time we spend together doing simple thing or more adventurous things.  I smile a lot, I laugh a lot. I enjoy my crafts and the people I’ve made friendships with online.  There’s very little pain of spirit, and most of what is there is due to chronic pain.  I am a very lucky woman. I’ll choose physical pain over mental pain any day.

Doctor’s Visit

Last night I went to see my  new doctor for the first time. I was a bit anxious.  My last doctor, while kind and knowledgeable, still focused primarily on depression (ok, so I broke down and sobbed uncontrollably in her office, but still…)  I would even have gone back to her if she took my insurance, but Medi-Cal has few contracted providers, so I’m pretty much limited to the one clinic here.  So I had no idea what to expect.

Dr. Saito seemed very nice; he asked good questions and seemed open to discussion on treatment.  He wants to start with blood work, of course, which I expected.   I discussed the possibility of combination T3/T4 replacement rather than just T4.  I had to repeat myself several times; English does not seem to be his first language.  I really need to start documenting my medical history; I forgot to tell him I have sleep apnea and use a CPAP machine, and that I have a history of migraines.  I forgot to tell him about the trouble swallowing, the pressure in my throat, the severity of the brain fog, etc.  So he said he’d renew my prescriptions for pick up next day, and order fasting blood tests, and I should come back to the clinic in the morning. It does strike me as odd however that he did not one bit of physical exam; no listening to the heart, no palpating the thyroid, nothing; did not even touch me. Just the assistant took vitals.  Oh and the good news there; I lost a couple more pounds!

I just got back from the clinic.  After being NPO after midnight, I go in, only to be told that there are no nurses to unlock the pharmacy so I can’t get my meds, which is fine, no biggie, but also, there is no lab tech til 1:30 pm. I’m hungry, dehydrated, already have a headache from low blood sugar, my head feels fuzzy, my index finger inexplicably has swollen up and is painful, along with the normal pain, I’m dying for a cup of coffee, I’m totally cranky, and I have to stay this way until 1:30 pm, at which time I’ll probably sit in a waiting room for an hour, as I did last night.  Sigh.

Don’t get me wrong, I’m grateful to even be seeing someone; not having had insurance for a year has been scary, especially considering what my husband went through in December.  I know the labs he’s ordered would have cost me several hundred dollars at least, and it won’t be coming out of my bank account.  My meds will be affordable, even for me.  So I’m really grateful to be getting some help.  It’s just a tad frustrating to be a cog in the wheel.

In other news, Murphy had his first game last night,which I had to miss because of the appointment.  They won, but by a hairsbreadth.  Murph is still a little gun shy from the last practice; he got DRILLED by a pitch that sounded like that comedian guy hitting the watermelon with a sledgehammer.  Not his head, luckily; his back, on his rib cage.  Going to have a fine bruise there.  I have immense respect for the coach; when Murph got hit he was at his side in seconds, holding him, steering him towards the chain link fence, comforting him while building him up at the same time, preserving his dignity in front of the other players.  I was very touched at how he handled it; just perfectly.  Murph got right back up on the horse, and had a nice hit the next pitch, but yeah, he’s still a little skittish.  It’s a fun team to watch this year; Go Padres!

I’ve been knitting a bit; working on some vanilla socks though I love the yarn. Trekking XL is probably my favorite sock yarn; comes in great colors, textures, different fibers from wool to bamboo.  Soft, but wears well.  These are my “sitting in waiting rooms” socks, the ones I keep in my purse to work on in spare wasted moments.  I’m also making some dishcloths and towels.  I gave up on the lace for right now; my brain just isn’t able to focus well enough.

Speaking of focus; the brain fog is getting worse.  I find myself searching for words a lot.  Yesterday I had a terrifying moment; I stopped at a traffic light, it turned green and for a split second, I couldn’t remember how to  make the car move. It wasn’t even long enough that anyone noticed, but it was scary.

Well, I had a bunch of stuff I wanted to do today, but since I’m so out of sorts, weak and in pain, I’ll take it as an enforced day of rest, at least till later this afternoon.  Knit if I can with my sore fingers, catch up on last night’s TV, nap.  Brush my teeth again to keep my  mouth from being fuzzy.  Blech.