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.

Hope: An Epic Fail

I just returned from the doctor after reviewing my bloodwork.  It did not go well.

I have textbook perfect bloodwork, except for a Vitamin D deficiency, which from a quick trip to Web MD seems to be due to being overweight, as Vitamin D is trapped in the fat cells.  Nutritionally, I probably get enough, since I eat eggs frequently and fish occasionally.  He’s going to put me on a supplement to see if that helps.

Other than that, I’m perfect.  So why the pain, exhaustion, difficulty swallowing, and other weird symptoms I have?  Three guesses, and the first two don’t count.  Depression.

I just looked up the DSM IV criteria for depression.  To diagnose depression, there are a list of symptoms, of which you must have 5 consistently for two weeks, and one of which must be a cardinal sign, which is 1.)depressed mood or 2.)loss of interest.

I have two of the criteria, neither of which are a cardinal sign.  The two I have are fatigue and diminished ability to think.  Pain is not even listed among the criteria, much less dysphagia, dizziness, temperature fluctuations, dry skin and itch, etc.

I asked him about combination therapy for the hypothyroidism; he flat out refused, since my TSH is normal.  I asked why there is so much resistance to even trying combination therapy, to which he replied he sees no reason for it.

He did test me for FM tender points, which was negative, not surprisingly. He did NOT touch my thyroid or in fact, touch me for any other sort of exam.

Tears of anger and frustration are ALWAYS seen as depression. I wish I could not cry, but that’s who I am, how I’ve been all my life.  I cry when I’m happy, I cry when I’m angry, I cry boatloads when I have PMS, I cry when my heart is touched, I’m the John Boenhner of crying. It does not mean I’m depressed.

I have not lost interest in anything.  I love spending time with my family, doing things with them.  I find happiness in playing board games with Murphy, or in watching his baseball practices.  I love to cook, I love music and reading and crafting and so many things, none of which do I not “WANT” to do.  Some I can’t do sometimes, most I can make myself do and the cost is always high, but I do it because the joy is worth the cost.

His plan is to treat the Vit D deficiency, see him in a month.  Ok, fine.  Meanwhile, unlike a depressed person, I will comb the internet for medical studies and see what I can do to find data for combination therapy.  I will get as much sun as I can.  I will see the NP and discuss it with her, since she presented herself as an advocate.  And I will continue to thank God every day that my husband still believes me, supports me, loves me.

Right now though, I think I’ll go cry some more.

Warning; TMI – Girl Stuff

So, today I went to see the nurse practitioner to get my PAP and girl stuff taken care of.

I haven’t been in a few years. I know, my bad.  Last year, I had no insurance, and the year or two before that, well, there was a combination of procrastination, forgetting, being sick of seeing the doctor because I was sick, and more procrastination.  I know it’s important, so as soon as I got insurance, I made the appointment.

While I was showering before the appointment, I thought, wow, probably the cleanest a woman ever gets in a year is the day of her gyn exam. I’m not big on the girl stuff; mostly because I’m too dang lazy.  I shave my legs maybe once a year; I shave my underarms only slightly more often.  Lets face it; I’m overweight and don’t go around showing much skin very often; no shorts, no sleeveless tops, so why bother?  I don’t go in for the grooming of the topiary in that area either; I’m not that coordinated and I don’t like sharp objects near the girl parts. Which is why I find it odd that when it comes time for the annual invasion of the speculum, my razor is in my hand and I go wild with the pumice stone. For the legs, people, c’mon!

I dress and get to my appointment promptly on time.  Stupidly, despite already in pain and having had a sleepless night, I forgot to take any medication whatsoever.  Duh. I sign in and wait to be called.  I always have my sock to knit, so waiting isn’t a problem.  Except that somehow the chairs they have in the waiting room seem to have been built by Torquemada.  I knit a row, get up and pace the waiting room, rinse, repeat.  It wasn’t a horrible wait, 15-20 minutes, maybe. My name is called, and the PA takes me to the vital signs room.  “Step on the scale, please.” I say, I was here last week, and I’m coming back tomorrow, is it really necessary every time?  Why, yes, it is, thank you for asking.  I obediently step on the scale, happy to note I’ve lost a couple more pounds, now making a total of 55.  She takes my vitals, then has me use the Ladies Room, and takes me to the exam room.

Is anyone else old enough to remember when they gave you actual johnnies to wear?  No more; they give you a paper garment, made out of that attractive blue waffle paper I always associate with the dentist.  It’s a crop top now; made to only cover your breasts.  Now, I am a large woman.  I am both overweight and well endowed.  This garment, which is to be open in the front, does not meet in the middle, nor does it begin to cover the bottom of my breasts. Sigh. I am also given a large paper cover to guard my bottom front, and told specifically not to wrap it around me.  I sit on the exam table on the paper disposable chuck, and I’m asked a series of embarrassing questions.  “How old were you the first time you had sex?”  “How many partners have you had in your life?”  “How many partners do you have now, male and female?”  “When was your last period?”  “Do you believe your partner has additional partners?” “Have you ever had an STD?”   I answer the questions, fired at me by a girl younger than my oldest child,  then I wait for the practitioner. (Why am I always tempted to answer with the most shocking things I can think of?)

And wait. And wait. And wait. By this time, sitting on the edge of the exam table, I’m in a LOT of pain, an 8, to be exact, judged by the convenient pain scale poster located conveniently on the wall in front of me. I give up, start walking around the room, clutching my paper garments strategically to attempt to cover the most vulnerable spots. I wander, go back to the table, rinse repeat several times. Finally, I say screw this, place my long flowy skirt to cover the more comfortable vinyl chair and sit.  It does help; the pain drops to a 7.

I knit. I check email.  I knit some more.  Finally, I hear the door open, and a face pokes around the curtain.  “I’m so so sorry” the whirlwind exclaims.  “You’ve been so patient, there was an emergency they had to fit in, it’ll just be two more minutes, I promise, then I’ll give you all the time you need, you’re my last patient!” and she’s gone.

I’m not annoyed; I do understand that things happen, and I appreciate that she thought to tell me what was going on. It always helps to know you haven’t been completely forgotten.  She was so cute about it, I just had to laugh.

A bit later she comes back and introduces herself.  She’s really very sweet, and oddly shares the same natal day as my husband.  She rather talked a bit like him too.  She made quite a point of saying that she’s the “safe” place; that it’s her job to make me feel comfortable, heard, and do whatever I need, which included making sure the physician requested any tests and such I wanted/needed.  As promised, she spent a long time with me, discussing girl stuff but also the other things that are going on with me.  She said several times that Dr. Saito was excellent, and that she would happily go to him herself. Always reassuring. She did the exam professionally but somehow also warmly and with compassion.  She told me later that she had done a lot of the sexual assault exams for the county,which explained her focus on feeling safe. And I did.  She’s very good at her job, and very knowledgeable.  I’m to have a pelvic ultrasound and mammogram at the end of the month, then see her to discuss.

I came home completely exhausted and in pretty severe pain, swallowed a pill and took to my bed. The Beloved made me lunch. I’m feeling MUCH better now…

Tomorrow I get to do it all  over again.  Well, not the Pap Smear.  I go to see Dr Saito to discuss the test results from the seven vials of blood they took last week.  I made a note in my phone of all my symptoms, ranked in order of severity, and bookmarked the StopTheThyroidMadness website so I can discuss her theories of treating Hashi’s. Here’s hoping he’ll remain open minded, that I’ll get a diagnosis, and maybe even start feeling better!

 

Cauliflower Poppers!

Okay, so this isn’t the newest street drug or a New Year’s Eve noisemaker.  This is my new favorite snack!

I love cauliflower in almost any form. It’s one of the few veggies I love both cooked and raw.  I have never, however thought about eating it for a snack, like potato chips.  I have now!

I got the original recipe from VegWeb.com, but I tweaked it a little.  Here’s how you can make your own!

Cauliflower Poppers

1 large head cauliflower, broken into florets
juice of 1 lime
3 cloves garlic, minced
2 teaspoons Dijon mustard
1 tablespoon olive oil
1 tablespoon tahini
2 tablespoons nutritional yeast

Clean the cauliflower, and break it into bite sized pieces.  In my family, some of us like it less cooked, some like it more, so if you leave some in bigger chunks, they’ll stay more firm.  I like it best almost burnt, so I get the tiny pieces.

Measure all of the ingredients into a gallon sized zipper type bag.  Moosh them around to mix them well.  If you don’t like nutritional yeast, you could try just adding extra tahini.  I’m not a huge fan of nooch, but in this recipe it works. Give it a try!

Now comes the fun part.  Dump all of the cauliflower into the zipper bag. Shake. Massage.  Work the sauce into all the little spaces in the cauliflower.  Keep working until most of the sauce has been worked off the side of the bag.

Please note that I’m actually doubling the recipe here, so yes, there are TWO heads of cauliflower in my bag.  Also note the joy on the face of the child, who made a deal with the Mom to pose for the picture if he wasn’t forced to eat it.

Now pour the coated cauliflower into a large pan or cake pain that you’ve greased or sprayed.  Bake at 400 degrees for 20 minutes to half an hour, stir well, then return to the oven for another 15-20 minutes, or til fork tender.

Voila! Salt to taste and enjoy!

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

Daily Menus

Since I know I’ve had trouble eating properly lately, and I further know that for my body to function it needs good nutrition, I’m going to start posting my daily intake again.  I’m not sure if I’ll do it here or at Sparkpeople; here is easier, there is more informative.  I just downloaded the  Sparkpeople mobile app; that may help with the ease factor.  Anyway, if I do it here, I’ll just post at the end of each blog post; feel free to ignore.  Maybe it’ll help me blog more regularly. HAHAHAHA  Oh well, one can dream….

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