My Day

Haven’t posted since getting back from Ohio. Had several weeks of recuperating, a day or two of decent health. Murphy went to camp, which I’m going to write about in a more pleasant post, but this, unfortunately for you, Kind Reader, is not going to be a pleasant post.  This post is about My Day Today.

So, here’s my day.

I wake up early, and as usual, my laptop won’t connect to our internet somehow.  I can’t figure out what the problem is; sometimes it works great, other times it connects for two seconds, then disconnects over and over.  It’s not the ISP; all the other computers in the house work fine, so it’s something in the way my laptop communicates with the router.  Go figure.

I take my handful of meds with my coffee and breakfast and go to take a shower.  I’ve been heartbroken about  being out of my favorite soap and shampoo, made by Lush. Fragrance is Karma, a blend of patchouli and orange, which is strange because while I love patchouli, I hate orange.  But it works.  Anyway, on a whim, I look under the other sink in my bathroom in the box I keep my Lush treasures in, thinking there might be a sample of something else in there, and what do I find?  TWO bars of Karma shampoo bars.  I leave it to you to visualize the dancing of the happy dance naked in the bathroom, or not, as you prefer.

I take my shower, no mean feat for me. Taking a shower wipes me out, but I’m bright and shiny simply because of my Karma. I get dressed and go to work.

That’s where the trouble begins.  My boss, BR, is not home, and her fiancee is, and obviously torqued off. They’ve been having issues lately, trying to see if they can save the relationship, and I think uh oh, maybe not!   I sit down at the desk and sigh. The desk is piled HIGH with disorganized miscellaneous papers.  Bills, mail, lesson notes, club info, catalogs, checks and payment receipts, tons of stuff to sift through before I can even begin to figure out what I need to be doing.  There are three companies that I’m doing bookkeeping and administration for, each with a clearly marked inbox, yet only about half make it to the correct box. Of the remaining half, half go in the wrong box, and half are strewn all over the L shaped desk.

So I wade through the papers as much as I can.  It’s so awkward for me because there are hundreds (literally) of notes scrawled on the backs of envelopes, on lined paper torn from legal pads, on torn up recycled scrap, all over everywhere, and I don’t like to mess up her piles,or delve too deeply into what it is, because I don’t know what’s personal, what’s confidential-none-of-even-an-admin’s-business, and what is stuff I’m supposed to deal with.  I do my best and after about 40 minutes, I have a little bit of a clue; well, I found the mail, opened and sorted it, and figured out what bills need entering, as well as cleared a small work space.

I begin doing my thing, and run into the next snag. The printer was out of cyan ink for weeks, and hooray! they finally installed new cartridges!  But the  *%&$(+ HP machine (or the computer, actually, now that I think of it, it has to be the computer) still thinks the cyan ink is out.  Despite the lovely ink indicator widget that shows it’s full. I have a work around that manages for a while, maybe an hour or so. BR comes home, obviously torqued off, and in a rush, because a client is at the door.  She needs copies of the intake forms, which I manage to print for her, and she asks for several more copies for later. I start trying to diagnose the problem.  I align the cartridge. I clean the print heads. I check there’s no tape over the thingys.  I reboot the printer.  I re-install the cartridge through the program on the printer.  Nothing works.  I try the help forum on HP; astoundingly unhelpful. I finally decide to reboot the computer.

Disaster.  The laptop will not boot back up. I try and try and try, for fifteen to twenty minutes, same thing every time; the computer stops booting really early in the sequence.  Finally, radically, in an effort to NOT have to take the laptop to the repair shop, I try accessing the BIOS during boot up- it works!  Get to the BIOS menu, continue boot up from there, and magically, it works.

By this time, it’s almost time for me to leave. I tidy up and write BR a note.  The same note that I’ve now written three times.  I need her bank statement from May, in order to reconcile her account. That’s right, I said MAY.  Her bank account is online, and if I ask her to log in while I am there, she gets all flustered and upset and can’t remember how to log in.  So I’m trying to get her to print it out for me when no one is looking over her shoulder. You need to understand that BR uses her debit card for EVERYTHING and keeps no record, so at the end of the month I have to enter a hundred or so individual debits into QB to keep her account equal to the bank.  Now, add to all this knowledge the fact that she pays in and out of ALL THREE separate companies; a trust from her parents, her personal, and the business account; she pays in and out of all three accounts sort of indiscriminately.  No funny business at all, don’t misunderstand, just a disorganized mind and a poor understanding of accounting.

In the note, I also ask again about the mortgage bill, which here on the 6th of the month, I have not seen yet (due on the 1st).  She has no clue.  She will go and pay it at the bank, with a check I will have no record of, and I will also have no record of the principal vs interest on her adjustable rate mortgage to post. Sigh.

So, for three more-complicated-than-they-need-to-be accounts, I work three hours, twice a week.  How much can I realistically get done?  Pretty much the only productive, necessary thing I got done today was putting the business deposit together to take to the bank.

The one good thing about the work situation is that both of them, BR in particular, don’t usually take their stress out on me; they speak civilly to me at worst, and nicely most of the time, but seriously, the tension in the house is ungodly. I’m so glad they don’t have kids.

So I come home.  Too tired to go to the bank, and not enough time, really. I get a phone call from Murphy’s school; they want me to come work for them. Gratis, of course.   Dear god.  Really? You’re going to do this to me now?  They need someone in the office two days a week, 8 am to 2 pm  and since we’re applying for a scholarship and all….. I’m freaking out; first of all I’m driving, and I hate talking on the phone while driving, but when I saw it was the school… well you know I’m a catastrophic thinker.  I’ve got all these thoughts in my head – what if this is a threat to our scholarship?  Why, just when I was getting some bites on paid fiber ed jobs?  Why, when last week I couldn’t even walk without a cane and my brain is turning to mush besides?  But maybe if I was volunteering, it could turn into a paid position, and she even said as much, and how cool would that be?  I explain my situation a bit, and say I’ll talk it over with the Beloved and get back to her.  And I’m home.

I have a doctor’s appointment at 1:30.  I’m famished, but the only quick food at hand is tuna salad, and I took pity on the poor doc and opted for rice cakes and vegan cream cheese. Tidy myself up, leave, and am at my appointment 10 minutes early.

Now, I take the 1:30 appt because it’s the first appointment after lunch, and theoretically, they shouldn’t be behind. So, I sit and wait, and knit, and sit…. actually, today the wait actually wasn’t bad, only about 20 minutes or so.  From the appointment time.  I limp in to the prep room, get weighed (if you had an appointment every day, they would still weigh you.  Drives me nuts.)  I note that I have gained about four pounds in two weeks; partly due to fluid retention, and partly due to old habits slipping back in.  I’ve been so stressed, and so immobile to fix my own meals as much, that I’m starting to make poor choices again, which feeds more poor choices.  This has to stop now.  They take my blood pressure, 120/90.  My diastolic tends toward the high, but no one in this office has ever even commented on it. Mostly, it hasn’t been that high, but like I said, I’ve been under a lot of stress lately.

I head towards the exam room; they asked why am I here?  Duh, cause he told me to make an appointment for two weeks last time!  I give the poor nurse a break and say for Fibromyalgia follow up.  She asks my pain level, and actually, it’s not horrible, so I say 6.  She says, the doctor will be in shortly.  So I sit, and I knit, and I sit, and I sit…. The longer I sit, the more my pain worsens. I do focused breathing while knitting, and it helps a bit. Finally, the doctor comes in.  He’s pleasant, as he always is.  I do note that since I took my husband with me, he does seem to take me more seriously; don’t know if that has anything to do with it, or if it has more to do with an actual diagnosis by someone he thinks is smarter than him, but either way, it works.

He asks “What can we do for you today,” and again, I think YOU wanted me to come in. I ask about the ultrasound of my thyroid I had last week, and he’s flustered, he hasn’t seen it. I ask about the status of the consults I’m supposed to be getting: ENT, GI, PT, Rheumatology; again, he knows nothing. I ask about the preauthorization he was going to get for my thyroid med that is no longer covered, and the Lyrica we wanted to start; again, nothing. He says “you haven’t heard anything?”  I’m supposed to hear?

He goes to check on those things with the nurses in the office, and I sit. and knit, and sit. While I sit my doctor visits two other people and a pharmaceutical rep.  I know that he did, because the walls are so thin that even with the doors closed I can hear what’s being said.  I even heard the nurse discuss the approach to take with Medicaid in approving my meds. I sit, and I sit, and I sit.  The longer I sit in that horrible chair, the worse my back is getting, and my pain has moved from a 6 to an 8.  I’ve had no pain med today, and I’m miserable. I’m shifting around in my seat like a hyperactive 5 year old at a birthday party – in a candy store!

Finally, he comes back, tells me the work around we’re using with the meds, so I’ll get them tomorrow.  Tells me they’re still working on the consults, and tells me the u/s showed my thyroid was slightly enlarged, but not enough to cause the trouble swallowing I’m having.  He can’t think what might be causing it, and says the ENT will figure it out.  If I ever see him.

He makes the mistake of asking if there’s anything else he can do for me. Well, yes, there is.  I feel shaky in the afternoons. My hands  and sometimes my legs, have tremors, sometimes (not often) bad enough that it’s hard to knit. This is a problem, since I’m currently trying to earn a living (unsuccessfully, but he doesn’t need to know that) by knitting. To my surprise, he actually pays attention to this one.  He does a bunch of “touch your nose” type neuro tests, and while I pass, he can visually see my hands shaking. He’s not quite sure what to do about this either, and starts thinking about a new med, and I stop him.  I’d rather know WHY.  We decide that until it gets worse or there’s other symptoms, we’ll just “watch” it.  I leave with new meds called in, still waiting for consults, with an appointment guess when?  Two weeks.

I’m really grateful to be able to see a doctor; I know a lot of people aren’t able to, people in worse shape than me. But still, I think, here is medicine at the bottom of the barrel.  Literally across the parking lot is a Complimentary Doctor I’d love to go to; a doctor that blends “alternative” medicine with “regular” medicine, who has an open mind, who could provide treatment and medication and testing that is simply not available to those on Medicaid. I know that his office is private enough not to hear other people in the hall or even across the hall.  Instead, I have a doctor who seems less than sure of himself, who doesn’t seem to understand a lot of what I say,or what I’m going through (although, I must admit, he was much better today!) in a clinic with paper thin walls and a door that must be unlocked to let you into the examining area. I would LOVE to see a chiropractor, and it’s even covered on Medi-Cal (though I’m not sure about the new Gold Coast (ptooey), but that doesn’t matter much when there isn’t a single one that accepts it. PT would help a lot too, but the consult for that has been pending for 2 months, as have all the others listed above.

So anyway, I get my appointment scheduled and get ready to leave.  Suddenly, my phone rings.  Now, when I went home between work and doctor, the Beloved was out cold on the couch.  I got my snack, cleaned up and left with him still snoring. I forgot that today was Murphy’s first real day back at school, and he needed to be picked up at 2:30.  My phone rang at 2:57. It’s the Beloved. No one had picked up Murphy.  He seems a bit annoyed. The Beloved does drive him to school in the morning, and I usually pick him up, but with the crappy day I’ve been having, coupled with it being the first full day and me forgetting to set my alarm, the appointment that I didn’t expect to last an hour and a half, and the fact that the Beloved had passed out as soon as he got back from dropping him off, and slept through my noon visit, I thought he’d probably be awake to pick him up.  Of course, he didn’t know what kind of a day I was having; the last time he saw me I was doing the dance of joy.  A wee bit of a miscommunication deal here. So, I go pick up Murphy and drive home, not looking forward to soccer practice at 4:30. Thank goodness, the Beloved agreed to that duty, and even said he’d get pizza for dinner, so I can rest. Instead, I wrote this train wreck of a journal entry.  Helped to get it out anyway. It’s now almost six o’clock; hopefully the rest of the evening will be peaceful; tomorrow is Murphy’s birthday and I have a TON of stuff to do. Sigh.

You know with the exception of a few major meltdown days a month (you know what I mean girls…) I’m really a very happy person.

Disappointment

So, after a day and a half of improvement, today is not going well.  I woke up aching before I  even moved out of bed.  The tinnitus is bad today, and the newest symptom, which I’ve had on and off for a week or two, a burning sensation in the soles of my feet, is so bad I don’t want to put my feet on the floor.

It’s extremely discouraging.  I had really begun to believe that the Neurotonin was helping; I suppose it still may be, but it would have been awfully nice to have more than 36 hours of relief.

The noise in my head is so distracting I can’t knit; added to the distraction of my soles being on fire and my threshold of stimulation is so over the top I can barely keep from screaming.  The TV is alternately too loud and too soft, sometimes both at the same time.

I’m trying to distract myself with more pleasant things but not having a ton of success.  The current political debate is too depressing to even try to contemplate.  Going to go teach Eric how to braid…

More On Pain

So, I’ve accepted that pain is going to be a part of my daily life.  The question remains: how to cope?

I can’t take ibuprofen anymore; it causes tinnitus. I have a consult pending with an ENT to see if there’s an organic cause, but I know for sure that taking ibuprofen makes it worse, so it is now reserved for severe headache, balancing the benefit against the consequences.

I had been taking Vicodin, about one a day.  I gradually, without even thinking about it much tapered myself off; it just doesn’t seem to help a whole lot.   I now take one a week or so, usually on the days where I have to work, and the pain is severe.

I saw my doctor Tuesday, after work.  I was in pretty bad pain when I saw her, about an 8.  Verge of tears kind of pain.  I hadn’t taken a Vicodin for work that day, because I wanted her to see me in pain.  I explained why I stopped taking the Effexor, and said I was open to trying a different SSRI, so she prescribed Zoloft.  Told her about not being able to take ibuprofen for pain, and she said we could try gabapentin (Neurotonin.)  Gave me prescriptions for both, told me to start them about a week apart.

After doing some internet research, I decided to start the gabapentin first.  It’s an anti-seizure medication that often helps with neuropathic pain.  I read many reviews of people with FM who have used it successfully to reduce their pain.  So I took my first dose last night.

The main side effects are drowsiness and dizziness.  I have never really had a lot of side effects from medication, so I was hoping I wouldn’t with this.  It’s only been twelve hours from taking it, so my experience is limited, but it did make me pass out on the couch, which after several nights of insomnia was a good thing.  Less of a good thing was being unable to move to the bed without help.  Even this morning, I’m dizzy, in a weird way.  I’ve been having bouts of dizziness, vertigo, which I absolutely hate, worse than pain.  With pain, I can still function, though it hurts.  With the vertigo, I’m down for the count; can’t do anything.  Can’t drive, can barely walk to the bathroom.  It’s totally debilitating.  Luckily, it’s only happened a few times.  With the gabapentin, this dizziness is a little different; it’s almost like being drunk without the euphoria.  I’m not nauseous, which helps; with the vertigo I am.  If I move slowly, it’s reasonably manageable, though I don’t think I’ll be driving.  I’m trying to find out from other users if this is a temporary thing.  And a dose related thing.  Right now, I’m on a very low dose; therapeutic  dose could be three, four, or even five times the dose I’m on.  I haven’t really noticed any effect on my pain, but I wouldn’t have expected it to happen this quickly anyway.  So I’ll try it for a week, see how it goes, then try the Zoloft.

A friend pointed me this morning to a link that discussed pain in a really intelligent, thoughtful way.  Chronic pain is so hard to quantify.  I’ve had some severe pain in my life; childbirth, though that wasn’t nearly as bad as I expected (I’d rate it about an 8), and the headaches when I had meningitis  and the pain from gall bladder attacks were both bad enough to induce vomiting from the pain alone. So that’s what I rate as a 10 on the numerical scale.  The most severe pain I can ever remember.  Contrasted with that pain, my day to day pain rates about a 5.  The problem with that is that five isn’t horrid.  Until you realize it’s never going to end.

That post linked to this one.  One of the comments on this post made a wonderful analogy; I’d like to give attribute but the poster was simply named as anonymous.  Here’s what this pain sufferer said:

I wonder if one of the biggest challenges with classifying pain is the fact that there are 2 types, transitory & chronic. Transitory pain can be excruciatingly awful, such as a broken bone, or a migraine, or childbirth… but it goes away. A few days of medication, and there is a resolution. It is clear that it can be “fixed” by drugs, breathing techniques, meditation or distraction techniques.

Chronic pain is a trickier beast. If you have a rock in your shoe, it is not a pain worth mentioning. It is a 1 maybe a 2. The assumption is that the rock can be shaken loose, that the foot will soon be comfortable again, since it is a small pain. It isn’t much, really, just a little thing. An aggravation in your shoe.

But it isn’t a little thing at all.

At first, it is an annoyance, really. An aggravation, if you tend towards anger. But after a while, the pain dominates your thinking. All you can think about is how long until I can take the pebble out of my shoe.

You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower. When that doesn’t work, you walk faster.

You buy better shoes. You buy a cane. You take Tylenol, and Advil, but the pebble is still there.

You try hopping. You try crawling. Still a pebble.

Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe.

“You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining.

“What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? I can barely think past the constant background noise of the pebble! How am I supposed to work as well as I used to?

But of course no one else can see the pebble. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Pain is a transient thing, after all. No one could REALLY be in pain ALL the time.

Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say.

Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

Chronic pain doesn’t have to be a strong pain to have a strong effect on your quality of life. Even a chronic pain of 2 or 3 should be taken as seriously as a chronic pain of 7 or 8, because your life changes in so many ways.

And it doesn’t just affect the person with the pain. My kids are 6 & 8 and my daughter has never known me when I wasn’t in pain, and my son was too young to remember it.

My pain affects their life every day, and I hate that. I find it so hard to live with that knowledge.

It doesn’t have to be a 10 on the pain scale to be a 10 on the “negatively affects quality of life” scale. If a doctor can give me back my quality of life by medicating my pain, even if my pain isn’t a 5 or higher, then why on earth would they choose to not medicate it? Why would one force my kids to make sacrifices in the richness of their life experiences just because one thinks my pain isn’t strong enough to warrant treating with anything more than over the counter meds? If OTC meds were working for me, I wouldn’t be in the doctor’s office saying I’m in pain and please help me do something about it. I’d be out there doing fun stuff with my kids and enjoying my life to the fullest. Yet, being young, and female, and diagnosed with fibromyalgia among other things, I find it next to impossible to get adequate pain control, and our lives are the poorer for it.

This is the root of chronic pain.  It changes our lives, every day, every minute, all the time.  It makes my son think twice before he asks me to get up to come see something he wants to show me.  It makes him ask how just going to watch him play baseball can wear me out so much. It makes my family schedule shopping trips around my pain schedule.  It makes my husband avoid intimacy because he’s concerned about my pain.  It makes me rethink and reroute everything I do. It adds stress to my thoughts and to my relationships, not to mention my finances.  It causes grief, anger, and transient depression.  It’s always there. The affect it has on my family is worse than the pain, so often I do things I probably shouldn’t because I want to be there for my family, and then of course, there’s the payment due, in the form of days or even weeks of a flare caused by doing too much.

It’s more than four years since I first noticed the symptoms; the fatigue and the brain fog was the worst at first, and I didn’t understand it.  Then the last two years it’s been the pain. And it’s still getting worse.  More symptoms, more diagnoses, more drugs and tests and consults with doctors who simply see me as an overweight middle aged pre-menopausal depressed* female with multiple complaints.  They turf me to the next guy in line and never think about how my disease affects my life.

One more link: a really helpful, thoughtful pain scale: The Mankowski Pain Scale.  It really is the most practical scale I’ve seen.  On her scale, I’m chronically at five or six, with flares to eight.

Current plan: Continue trial of gabapentin for at least a week.  Waiting for approval for the following consults: ENT, GI (colonoscopy), Physical Therapy, possibly Rheumatology.  See doc in two weeks.  Remind her of elevated cortisol and see if aldosterone remains elevated.

*Re: depressed: I always need to make it clear that they see me as depressed, but I am not.  I have moments of depression, as anyone with a chronic issue would, but other than my pain, I love my life, my family, my fiber obsession, music, all the things I do.  I see myself as a very lucky, blessed woman with so many good things in my life, and I appreciate all of then every minute of every day.    There is nothing wrong with a diagnosis of depression when it’s justified, but too often it’s the box they put us in when they can’t figure out (or deal with) what is wrong with us.

Adjusting

So, it’s been a couple of weeks since I posted.  Not a good sign.

For the first time, the pain has been significantly bad enough that I’ve been spending more time in bed.  Standing up, or even sitting for too long made my back feel like it was on fire.  That’s been hard to take. It means I’ve  been stuck in my room (the hottest room in the house), isolated from my family much of the time.  Isolation is not a good thing.

I’ve had to start thinking about my life differently.  I have to stop putting things on hold “until I feel better.”  I may not ever feel better, at least not overall.  I may, of course, and I can continue to hope and work on ways of feeling better; but I can’t make that my focus.  This is my life now.  I have good days and bad days.  I will have days when it gets to me and I’ll be blue, and I’ll have more days (I hope!) where I’ll focus on the good things in my life that are there every day.  I may have days when I can’t get out of bed, and I will have days when I’m almost “normal.” I need to focus on the present.  I’m learning to pace myself a bit better.  Learning to ask for help sometimes.  Still need to work on that.  I do wish I had a larger pool of people to ask; the Beloved needs a break once in a while from my neediness.

I no longer worry that this is all in my head.  Even I couldn’t invent this hell for myself.  I don’t know if it’s Fibromyalgia, or CFS, or thyroid, or some other damn thing.   I just know it’s real.  I celebrate the days I’m doing better, and just try to muddle through the bad days as best I can.

So far, I haven’t found anything that helps in any way.  I’ve tried so many dietary changes, and other than the initial “vegan” change, nothing has made a noticeable difference.  Worrying about it, and the cost of the diets, and the extra work involved have not paid off, so I’m giving it all up.  I’m going back to being “ovo-pescatarian” as that was the only thing that made an improvement in my life and agrees with my ethics.  Gluten free was simply too hard, too expensive to maintain, as was soy free.

I’m very much hoping my doctor will arrange for some physical therapy; I feel that would be the most helpful thing (other than maybe an in-house masseuse.)  She initially suggested it, so it’s a matter of whether Medicaid will pay for it or not.

Right now, my focus  is on feeling better about myself.  Making these thoughts concrete helps.  I’m doing some girly things to help me feel better about my appearance too; pics later if it turns out.  Setting a schedule, trying for some kind of flexible routine, learning what the limit is each day will help me manage my “adjusted” life.  Thinking more about how to manage my own fiber business for some sort of income.  Though even knitting is beyond me some days…

It’s strange, but in a way, surrendering to the “IS” actually makes me feel more in control; the constant struggle, denial, and fear took that control away.  Now that I’m dealing with how things really are, I’m back in the driver’s seat. How’s that for Zen?

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…

Thinking+Hormones+Pain=Someone isn’t going to be happy

I’ve been trying to cut back on the pain medication this past week.  Why, you ask?  Well, several reasons.  Slowing down my GI system unpleasantly is one, a basic avoidance of medication in general whenever I can help it is another, and the third reason is paranoia.  I’m so afraid of being labeled a drug seeker.  Doctors immediately become suspicious about anyone complaining of pain; for my previous doctor to prescribe a bottle of Vicodin, I had to sign several “contracts” stating how I would use the drug, promising to only fill my prescriptions at one pharmacy, surrendering my rights to my first born… ok, that last one was hyperbole.   But you get the point.

This is one of the hazards of having an “invisible” illness.  One that can’t be quantified by lab tests, or by visual examination.  I walk into the office and I look fine.  I walk ok, I smile, laugh, move ok.  I look like any healthy person on the street.  But check in with me later in the day when simply moving through a normal day has worn me down, tired me out.  You still can’t see the pain I’m in, though I might be limping a bit.  You can’t feel the aches in my hands, the burning of the soles of my feet, the fire burning in my lower back.  You could watch me cook dinner though, watch me as I have to sit down while I cut and slice and chop, and invariably despite the sitting, by the time dinner is done, I’m on the verge of tears.  You definitely can’t feel how utterly exhausted I am.

I had a bad day today.  A fight with the kid, exhaustion, over-stimulation, trying to do too much, and I’m probably premenstrual.  I went into the kitchen to get some lunch, had the aforementioned fight with the adult child, ended up never making lunch.  By four pm, I was cranky, hungry, irritated, angry, in pain (not having even taken a Motrin today) and was trying to figure out what to make for dinner.   I did take a pain pill then, at least, but was so overwhelmed that I could not plan dinner.  The Beloved fed himself and the child while I tried to de-stimulate with solitaire.  Finally, I made myself dinner (vegan sausage sandwich, kale salad, Fritos) which was delicious; but by then was so tired that literally, the effort involved in lifting my fork to my mouth and chewing was almost too much. I know how melodramatic that sounds.  Even having felt that way, later, when I’m not in that state, I can’t quite remember the depth of that kind of exhaustion.

Later, after the Vicodin peaked, I was able to do some laundry, clean up after myself in the kitchen.  And that’s why I take the Vicodin.  It allows me to function, least a little bit.  I only take one a day usually; on a bad day I might take two.  Never taken more than two in a day.  I feel so defensive about it, which makes me so angry.  I should not have to avoid taking medication because I’m afraid my motives are in question.

My one consolation is that I’ve gotten really good over the last few years at recognizing the sources of my discontent, and don’t generally take it out on the people I love (though Eric might disagree with that today.) At least I don’t have to add the guilt of that to my ills.

 

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.

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