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…

Feeling Bad, Easter Eggs and Mother’s Day

As you may have noticed, I haven’t posted in a while.  I’ve been too miserable, too overwhelmed, to brain-fogged to muster the energy to post.  I save every bit of energy I can come up with to spend time doing things with my family. I am determined not to let this thing interfere with being there.

I do have to, occasionally. I did miss one baseball game because I was just in too much pain, dizzy, nauseous, etc, that I just couldn’t see how I could do it without making everyone around me miserable.  So I stayed home and napped instead.

I seem to be coming out of it a bit; the pain and exhaustion hasn’t been as bad the last week or so, and I recover a bit faster than I have been.  I still have moments of strange though.  On Tuesday, I got so dizzy and nauseous I wasn’t sure I was going to be able to drive home.  I did, barely, and fell into bed and didn’t move for the rest of the day.  Last night, I was so happy to have worked a bit in the morning and not feel like death warmed over that I tried to help wash dishes while dinner cooked, and I had a sudden bout of weakness; my arms and legs shook, didn’t feel like they’d hold me up, I got diaphoretic and winded and had to sit down for about twenty minutes.  I have no idea where that came from.  Those types of episodes are really frustrating; at least with the pain I can function if I have to, and of course, there’s medicine to help.

Anyway, we have had some fun since I last posted.  One of the most fun things we do for Easter is coloring eggs.  We don’t do it with dye tablets or food coloring; we dye with ties!

Much later…. I drafted this post and never got back to it. So will be continued in the next…

How bad can you feel?

Just when you think you’ve reached bottom, that you feel as bad as you can ever feel, you discover that it’s really a whole new level of lousy.

Friday was a wonderful day. It was our eleventh anniversary.  Since we’re currently living at “poor church mouse” level, I didn’t expect much in the way of celebration, except I  knew we’d probably go out to dinner alone, without the children, for a change.  Which we did, and it was lovely.  That would have been enough, really; he gives me  so many gifts every day I don’t need more.  However, the Beloved surprised me with three cards and  a gift.  I was amazed.

The cards were perfect, as always.  The Beloved and I have a slightly warped sense of humor, as evidenced by the April Fool’s Day Wedding.  So for the first card, it was sweet.

Who, us? Fight over the remote?  Never happen.

The second card was amusing.

The third card, as always, was a Sympathy card

I personally think he’s the one who needs sympathy, but if he sees it that way, who am I to argue?

Here’s the earrings:

As always, he has my taste down perfectly.  I love multi level, mixed metal jewelry.  Gorgeous.

How did I find a man with such good taste?  Lucky, lucky woman.

Then we went to Sea Fresh for dinner. Yum.  Serious yum.  I had Sesame encrusted Ahi Salad, with a citrus teriyaki dressing.  I even splurged and got the optional tempora veggies.  Yum yum yum.

The Beloved had the Ahi sandwich, sans bread, with onion rings.  He even shared.

Oh, I forgot; we got an appetizer!  The Monkey Dragon Sushi Roll;  awesome! Those chopsticks are blurry because I tried to get a picture before we dove in; barely made it!

It was a lovely anniversary.  But honestly, there is so much love in our house every day that it’s redundant to celebrate so extravagantly; though it won’t keep us from doing  it!

So, that’s the good stuff.  Here comes the not so good.

I woke up very slowly on Saturday.  Having had a lot of activity and excitement on Friday, I knew I’d be tired, so I woke up but didn’t get out of bed for hours.  I puttered on the computer and read, and listened to music, and got caught up on Craig Ferguson on DVR.  Made the video in the post below, which was a blast.  Then around 12:30, I got up to get dressed to go to Murphy’s baseball game.  Gave myself an hour, figured that would be plenty of time so I wouldn’t have to  rush.

Somehow though, at the time to leave, I found myself running around crazy collecting blankets and jackets and snacks and water bottles and pain meds to bring along, and by the time I got into the car, I felt AWFUL.  Seriously exhausted, headachy, and pain building everywhere.  So I took the pain meds I brought with me immediately. Without food.  Big, big mistake.  Watched the game, which was fun, but tough; the Padres took a beating, though Murph played really well, got a couple of great hits.  It was cold (again with the temperature changes; last weekend record lows, mid week record highs, and back to near record lows this weekend) and I’d worn sandals; feet and fingers were not happy.  Hubby offered his socks, the sweetheart. Came time to go, and I stood up to find I could barely make my legs move.  Even using the folding chair as a cane didn’t help much; it hurt my hands as much to lean on them as to walk.  Added to that was HORRIBLE nausea.  I knew I was going to throw up in the car if I didn’t get something in my stomach, so the whole way home I nibbled the granola I’d brought and not eaten, as I hadn’t been hungry.  Made it home without vomiting, though every bump and turn was agony.  Went right to bed, didn’t even take off my clothes or unpack my bag.  Slept about five hours, on and off.  Woke up just in time to say good night to Murphy. Ate some dinner the Beloved had left for me.  Watched TV with him, but felt so incredibly bad I kept tearing up in pain and frustration.  Medicated again, though I’m terrified my practitioner will not renew my dwindling pain prescription.   Spent the rest of the evening snuggling on the couch.  Then slept a full night.

I feel a bit better this morning but there’s so much to do.  Laundry is overflowing, taxes need to get filed, knitting for money needs to be done.  Never mind the normal household stuff, which the poor Beloved is having to do more and more by himself.

I think I need another tour through “How to be Sick” by Toni Bernard.  I never did get around to making notes on it, so I can keep a pocket reference.  I think it’ll help.  But mostly I just have to learn how to stop to think in the middle of feeling so bad, not let it overwhelm me, so that I can redirect my energies.

I really want to cook today; I want to make Amish Friendship Bread starter. If anyone is interested in receiving a starter kit, let me know, I’m happy to enable others. I also want to make baked donuts.  Can you tell I’ve got a Carb Lust on?  I’ve been pretty good lately, eating mostly salad and veggies, so maybe I’ve earned a treat.  Will have to see if I can stay vertical that long though.  Maybe I can enlist Murphy and Eric to be gophers in the kitchen…

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.

Better and Worse

Yesterday and today I was starting to think I was maybe coming out of this “flare” that I’ve been in the last few weeks. I’ve had more energy, though I’m still really tired and have a lot of pain, especially at the end of the day.  This is of course a two edged sword. I way over did it the last two days, so I had planned to take it easy today. Not being the sharpest pencil in the drawer, I woke up today and started; cooking, cleaning, organizing, laundri-fying, etc. It feels so good to do something, to feel useful.  It’s now five o’clock, and it’s catching up with me.

I think I still am coming out of the flare. I just really really need to work on that pacing myself thing. It’s so hard though; I put off so much when I’m in pain.  My room is a disaster; it currently approaches “Hoarder” status (though without the human feces, thank you.) Laundry was so backed up that poor Murph didn’t have socks for school this morning.  Luckily I found a pair that fell down in the cushion of my easy chair, where I put laundry to be folded sometimes.  My yarn and fiber stuff is E V E R Y W H E R E in my room because ages ago (BH = before hospitalization) I was trying to sort and organize my stash and I’ve never finished. I get very easily rattled when my environment is chaotic, even when it’s my personal chaos.

Several good things got accomplished this week though, and that makes my mental well being improve.  A good thing.  I just need to learn how to take baby steps sometimes. A hard lesson to learn for someone who has been “all or nothing” my whole life.  But I’m getting there.  By baby steps.

Daily Menu

B – Stuffed French Toast (Sourdough bread, vegan cream cheese and fruit, dipped in egg wash and griddled.  Awesome!)

L – Green drink.  Salt and vinegar potato chips, blueberries.

D – Yakisoba noodle bowl

S – So Delicious Chocolate Obsession Ice Cream

It has been an exhausting couple of days.

So yesterday I worked for a few hours in the morning, then did a little gardening, a little child interaction, then the stress of the doctor’s visit.  I was pretty exhausted and in pain when I went to bed last night.  Today, did the blood work deal, some laundry, napped, went back to the clinic to have SEVEN vials of blood taken (at least I can’t complain he’s not trying to find out what’s wrong!) and then took Murphy to his baseball practice.  I had promised him pancakes for Mardi Gras but I was reaching my functional limit, so I wimped out and took him to Carrow’s for dinner so he could get them.  Since there is not one other thing on the menu I can eat, including their salads, for heaven’s sake, I had onion rings.  Which probably have milk in them too. Oy  We are now home, and I am beyond tired.  It was fun though.  It’s a very fine line to walk, pushing one’s self to remain a contributing participant of the family, and not pushing so hard that the cost is days of pain and exhaustion.  Like Stephen Tyler, I don’t want to miss a thing.  Kids grow up so fast, and Murphy is nearing the age where he’ll start pulling away from us.

Tomorrow I think I’ll be mostly camping out in bed, knitting if my finger hasn’t swollen much more, reading blogs, writing emails, relaxing.  If the pain isn’t too bad, I’d like to do a little cooking.  Hoping to work a bit on Thursday.