mini-update

 

I’ve had 5 days of switched meds.  I’m doing pretty well.  I’m not dizzy any more.  My blood pressure is getting better.  The nose spray has improved my stuffiness much better than the old meds were doing.  I’ve made myself a little chart to cross off which pain med I took last so I can be sure I’m rotating properly and not just relying on my brain to remember.

Speaking of making my brain not have to remember so much, I’ve also made a better planner so I can keep track of the things I have to do.  I’ve been marking pain levels and headaches on that each day as well, so I’ve got a place to keep track of that that’s not the family calendar (which is too crowded to hold that info) or too separate from daily life to remember writing in.

A

Taking a walk with my favorite Small

I’ve been taking daily walks the last couple weeks and keeping up on my PT/stretching type stuff.  Next week I’m going to try to get back on track with exercising in the mornings and doing my balance ball PT exercises.  I’m happy to be in a healthy enough place to do all that.  🙂

Results!

“Providence has its appointed hour for everything. We cannot command results, we can only strive.”

–Mahatma Gandhi

Between last night and today I got all the results I need for a while.  Here’s what it boils down to:

1. I’m not having seizures.

2. When I got taken off all the pain meds cold turkey, it a) caused rebound headaches and b) made my blood pressure go up.  The neurologist should have known that and shouldn’t have done it that way.

3.  The antihistamines I’ve been on for the last decade off and on and off and on and off and on…those are NOT GOOD FOR ME.  “Why were you taking them?!” said the doctor.  “YOU told me to!” said I.  “I did this to you?!” said the horrified doctor.  I just nodded.  “Oh my.”   The doctor told me that in the combination of meds I was taking, we can account for the dizziness, the memory lapses, and the blood pressure raising.

4. I need to take better care of myself.  Period.  I should have been tracking my blood pressure and my headaches and my dizzy spells and I should have gone in to see the doctor as these things were happening, not just after a few weeks or months of them occurring.  I need to rest more, too.  Yes, yes, I know this.  I’m just never convinced that what’s going on is all that bad, so I put things off.  Also, resting is for old people and babies.  Well, that’s what my brain says, anyway.  It’s wrong.

So in the end, here’s what I’m doing:

1. Stopping the antihistamines.  Throwing them in the trash. Perhaps stomping on them.

2. Starting a nose spray.  Start breathing again.  Breathing more and better will relieve some of the dizziness and help me think more clearly. Who knew?

3. Be more careful with my pain meds.  Making sure I cycle through them properly instead of only taking the naproxen, even if the rheumatologist says I can do it that way.  The neurologist says that way lies the path of the headaches.  (Although maybe I shouldn’t listen to any of the doctors, really.  Cause where has that gotten me?  Thousands of dollars of testing and insanity.)

4.  Call the doctor back in two weeks with more blood pressure stats and let him know if my nose spray helps me breathe.

5.  (It pains me to say this) RESTING MORE.  (I just spent 30 minutes on the couch watching repeats of Downton Abbey.  It was glorious.)

So there you have it.  Results.

Experimentation

Since I am on day a billion (okay, maybe day 14) of The Headache That Never Goes Away, I’ve started an experiment to see if I can figure out how to make it go away.  I haven’t managed it yet, but I have managed to make it worse a few times.

 

Things that made my headache worse:

  1. Exercise.  Light.  Exuberant.  I didn’t seem to matter.  If I was moving around, it was worse.  So I’ve given it up for now, barring the daily stretching.
  2. Bending over at all for any reason, actually.  Which I do A LOT and can’t give up.
  3. Lack of caffeine  – gave me another kind of headache on top of what I already had
  4. Too much caffeine  -also made me nauseated
  5. Loud things, including but not limited to: my kids, the tv, the radio, the ticking of the turn signal in the van, the tippy-tap of the computer keys.
  6. The Evil DayStar
  7. Looking back and forth from the TV to my book and back again.
  8. The same with the computer and my kids across the room.

 

Other things:

  1. I’m still sleeping ridiculously well.  I go to bed at night, crawl in, and next thing I know it is morning.  It’s amazing.  I don’t think I’ve slept this well since before I had children, maybe not even then, actually.  Maybe not even since childhood.
  2. I have been very blessed lately by friends watching my kids some for me while I finish projects that will make my house easier to keep clean & tidy.  That has been so very wonderful.
  3. Despite all those good things, as each day goes by I’m having more and more weird little episodes.  They seem to be less big (see, even typing I can’t think of the right word) but occurring more often.  They’ve started happening in front of other people, other adults.  Oddly, this has been a good thing in a couple different ways: 1) people are being more helpful, and 2) people are telling me things I am doing/saying/etc that are weird that I would not have picked up on myself.   I’m keeping a list for the neurologist.

Neurologist appointment

I had a follow-up appointment with my neurologist today.  One of those super-extra-long appointments that you’re not quite expecting.  My “migraine’s” had been getting weirder of late, so I had my headache chart all filled out and made a list of the extra special weirdnesses that had occurred recently.  She studied my chart, asked quite a few more questions, and told me I’d be having more tests run and be getting a couple new medications.

 

One of the tests (done today) was just to check that I hadn’t accidentally overdone it on Vitamin D.  I was way low previously, so at my last appointment she’d told me to up my dosage on supplements, which I did, following her advice about how much.  So we’re just checking on that.  The other test will be an EEG because she’s concerned that my weirder episodes aren’t migraines after all, that they might be seizures instead.  In the end it doesn’t really matter, as the meds she’s prescribing will take care of both of those things, but seizures require twice the dosage you take for migraines.  (The other medicine is one of those migraine stoppers you take once the migraine hits – I used to take those a lot.)

 

So…I came home and started looking things up on the internet about seizures.  It was quite interesting, but I’m not getting worked up about it, especially after all that testing last summer that ended up coming up with nothing new.  I’m going to try to chill out and not worry about it.  At this point, what can I do, right?

Voltaren update

My husband went and got my Voltaren prescription filled this afternoon.  I always love sending him to the pharmacy.  The people there never talk to me outside of asking my name and telling me to sign here or there.  He goes in and they get all effusive and full of facts about the drugs I’m taking and how to take them most effectively.  I don’t know how he gets them to talk.  He thinks it’s just because he’s picking it up for me and is not me and they’re trying to be careful.  *shakes head*

 

Anyhow, 4 things: 1) This “really expensive” tube of medicine only costs as much as one session of PT, which I find to be really cheap since the PT session is only one of like 20 that need to be paid for and this tube will last as long as all 20 of those sessions for the low price of just one and 2) Voltaren did wonders for my unhappy thumb.  (My back, well, we’ll see.  I did a bunch of stuff while waiting for it to dry and I think I made my back pain worse than it was.  Will try on another joint tomorrow and see if it helps like my thumb.)  3. It does not burn.  That is so delightful!  4) It smells like old-school lysol, which makes me all nostalgic and hasn’t annoyed me.  So for now we’re cautiously optimistic.

New diet/exercise plan, day five

…an update.  🙂

 

So far, so good, I guess.  I’ve been tracking my food again on Sparkpeople.com, as they have more food in their calculator than the other place did.  (Plus they let me start over.)  I’ve been doing really well, calorie-wise, even despite one unintended meal out (Subway, I picked from their low-cal list and came in right on budget) and some interesting meals to try to gauge info on.  (Most stuff you can figure it out if you know what proportion of ingredients went in to your particular plateful of food)  I am not feeling in any way undernourished and I’m enjoying my lunchtime salads.  This week I’ve had one that was Italian (spring mix & American veggie mix combined, sliced real olives, turkey pepperoni, zesty free-Italian dressing), one Mexican (fajita meat, guacamole, salsa, American veggie mix with carrots), one egg salad (boiled eggs, a dab of mayo to hold them together with spring mix instead of bread, crumbled turkey bacon), and one off the back of the Fat-free Ranch dressing bottle (kidney beans, ranch dressing, carrots, American veggie mix, onions). Breakfasts have basically been a flavored oatmeal, a fruit, sometimes some turkey bacon.  I’ve been trying to wean myself off the caffeine and drink more water than tea/coffee.  Some days I have snacks, other days I eat more dinner instead.  It just depends on the day.

 

Exercise had gone well until yesterday, when my husband was unexpectedly home in the morning during my workout time (his gym just closed without notice).  I didn’t manage to exercise at all, but I also didn’t really feel like eating much yesterday either, so we’ll just count it as even?  Something like that.  The only problem with this exercise thing so far is that I get up, do it, feel fine all during the doing, then when I stop I get this ferocious headache.  It’s migraine level pain, but it’s not a migraine –it’s all over the front of my head, not just one side; lights do not make it worse; I am not nauseated.  Fortunately for me, I see my neurologist next Thursday, so I can ask her opinion on these headaches.  Today I do have a true migraine.  I haven’t had one in a while.  I think this one was brought on by a trip to Bath & BodyWorks.  I hate this weird scent sensitivity that I’ve developed the last couple years.  It’s really annoying.

 

Also next week I get to see the rheumatologist.  I’m looking forward to that; we’re going to discuss the drug situation and see if we can get me on something I can live with. 🙂

Flare, flare, flare, flare, flare

Good morning!  I’m happy to report that after a couple weeks of not having hands up to the task of typing in the morning that this morning I can actually type.  Yay!  I’ve been having a flare up the last couple weeks, probably brought on by the stress of a) babysitting, b) trying to get ready for Christmas, and c) spending too much time on Pinterest (I love it, but it also stresses me out).

Another part of my problem is that I fell a couple weeks ago.  It was one of those things you’d see in a comedy where one foot slipped one way and I fell on my butt (hurting my left hip and right hand & wrist), then slipped again in the same water spot getting out of that position, (bending my right foot backwards) falling onto my right knee.  I was, naturally, babysitting at the time.  We’d just come back from the library and I had warmed the water for cocoa, taken it out of the microwave, and was walking over to the spoons when it happened.   The kids were delightful; they brought me towels and ice packs and marshmallows and then finished making cocoa on their own (which is amazing cause they’re only 4&5-year-olds).  I sat on the floor for about half an hour waiting for another adult to come home.  My husband was due back “any minute now” and the babysittee’s mom was due back very soon as well.  But neither of them was there and after a while the cold floor was making me feel so much worse.  So I told the kids to run off (so I wouldn’t fall on them), dragged a couple stools my way, and gingerly got up.  Used the tall stool as a crutch to get me to the comfy chair, where my phone was (the kids couldn’t find it, hence me not calling for help).  So I checked the phone and there were messages from both adults citing meetings as their cause for lateness.  The kids brought me the ice packs and towels again and we watched TV until my friend showed up.  She sat with me awhile, just chatting and keeping me company so I would rest (does everyone know I rush on the resting?!). She also, miraculously, had samples of BioFreeze in her car (her husband manages the local smoothie place & they get free samples of stuff).  So I tried that out (hated it, btw.  too cold feeling.)  Eventually I had to get up and finish my days plans, since it was the last day of the month and the car registration needed picking up – new tags do not come by mail, who knew? – we can’t have a ticket, no no.  I put on my ankle braces, my high topped shoes, my knee wrap, my wrist brace, and off I went.  Fortunately the line was super short and we sailed on back home, whereupon I did not leave the couch again the rest of the night.

The fall scared me to bits.  It was one of those things you don’t see coming and then you don’t think will have lasting consequences.  But I wasn’t able to play at my piano lesson that week; my hand wouldn’t reopen enough for arpeggios.  The piano teacher was all that was loveliness and we discussed my pain levels and treatment options.  I braced & limped my way through other activities, eventually going for the slow-but-no-limp option, as I was stressing the other side of my body by limping.  By my next piano lesson I still wasn’t playing well because my hand still hurt.  I’ve been doing hand exercises every morning in the shower and I seem to be doing better handwise now, but I can’t pedal with my right foot (and have you tried pedaling with your opposing foot?  It’s just weird!) as the front half of that foot still feels wrong.  I’m still wearing my super-heavy-duty shoes, the ones that keep my feet happily trapped and ankles upright.  I hate them, but I’m wearing them.  I keep thinking that if I’d been wearing them that day I wouldn’t have been hurt as bad.  Maybe not even slipped at all.  It’s ridiculous, but there it is.

So now that I’m all scared about another fall, I’m being certain I have my phone with me everywhere.  It’s cold outside, so I can wear the robe with the pockets in the morning and my phone rides along with me.  I’m taking it into the bathroom with me (in the past I’d leave it on the table by the door as I go in; people that talk on the phone in the bathroom bug me) and leave it right outside the shower door when I’m showering.  Like I said: this really scared me.

Anyway, so the flare flared up more after that.  I’ve been running around like a crazy person trying to get everything done.  It finally caught up with me Friday.  Nick came home from work at lunch, took one look at me, and suggested a nap.  I, who do not sleep at all during the day, laid down and slept for 3 hours.  Totally missed the kids piano lesson, only woke up because the piano teacher called and said she was waiting.  The next day I rested all morning, wore myself out completely showering, then stayed home and slept through church.  Got up, watched a movie, marveled at how comfy sweatpants really were, and finally got up enough energy to empty & refill the dishwasher for the first time in two days.

Yesterday the house really needed cleaning.  I broke it down into segments of “work really hard until a joint hurts to much to continue, then find another job that doesn’t involve that joint until a different one yells, then find a job that requires neither of them, then start over again.”  It was delightful, really it was. I put the kids in charge of laundry and cleaning their rooms.  I did the kitchen and the sweeping and the bathrooms.  Husband worked half the day, brought lunch home (we never have take away food, so it was such a surprise), and then fixed a light fixture and the dishwasher, as this is also the month everything breaks.

So I was really surprised after all that hand-using yesterday that my  hands would be up to typing this morning.  Yes, it’s taken a while, but my fingers really aren’t doing half bad this morning.  WOO HOO!  🙂

New season, new aches?

As the season has been turning cooler, I’ve noticed new aches and pains that weren’t around in the summer months.  I’ve started carrying my seat-back-cushion into places that I’ll be sitting for long periods of time (anything over half an hour really).  I’ve noticed that the one I use around the house, which I got over the summer (at the dollar store, of all places) and was tremendously nice then, isn’t as nice now that it is cooler out because it has vents that let cool air through.  The one I use in the car is more like a fitted pillow and now that it’s cooler out I’ve been noticing how nice and warming it feels when I lean against it.  That’s the one I take in places anyways.  I was worried when I first started doing it that people would look at me funny or make comments, but the only thing that’s happened is that the pastor’s wife is now bringing in her own back support and a stool for her feet (genius!  I’m bringing mine next time!).  I haven’t yet asked what’s going on with her, but I know she has some kind of pain condition and I’d like to reach out to her, but I’m not sure how much reaching out to do, exactly (this is our new pastor & wife; we don’t know them well yet).

I’ve also noticed issues sitting at the piano.  It’s not just my fingers, wrists, and hands that hurt.  It’s also my shoulders, spine, hips, and even my feet.  Oddly it leaves my knees alone.  I’ll take that bit of goodness!  🙂  The funny thing, to me at least, is that I remember this pain.  I remember it as part of my burn-out process.  It just started hurting so much to sit there and play.  But I’m not giving up this time.  I know now that the pain isn’t just going to go away on it’s own, that it is as much a part of the process of everything that I do, and that I can’ t let it take the joy away with it.  So I’m practicing more often in shorter shifts and that seems to help.  Plus it fits in great with my schedule!  Oh look, I have 10 minutes before we have to go, I can practice!  🙂  Also, my fabulous husband got me a heated back massager, the kind that straps into a chair and does rolling & shiatsu style massages.  It has been a thing of wonderment.  It works best in a plain wooden chair, but I’ve given up on that plan, as I don’t have one to spare and it’s not easy to move around.  So it sits in my bedroom reading chair for now just waiting for the next time I need it (which some days is 3x a day and sometimes only once).  It is so very lovely.

In other news, I wore sandals yesterday after the cold front went through and woke up to my feet feeling like there were shards of glass in them before I even got out of bed this morning.  So I finally dug out all my cold weather shoes.  I also have been stocking up on comfy house socks, since I have a general dislike of shoes, but my feet get too cold in the winter without them.  I have blue polka dotted ones and white-purple-pink polka dotted ones and once I fix the one sock, I also have black ones with little dangling cherries.  I’ve also had a kid (guess which one!) volunteer to do my toe nail polish for me, since that seems to be harder than usual lately.

Well that’s about it for today.  I hope that all those writing prompts my brain came up with yesterday come back to me today so I can write them down.  🙂

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Summer is nearly over…why am I so tired?

Oh yeah, because I’ve had 3 sinus infections this summer and no RA meds (other than NSAIDS) at all to speak of.  I’m getting a CT scan of my sinuses next Monday, as my PCP thinks I’ve crossed over from an acute to a chronic sinus issue.  From there I’ll probably go on to see the ENT and talk about sinus surgery.  I’m not at all interested in surgery, but I am interested in getting better and getting back to healthy again, so I guess it has to be considered.  Before you ask, yes, I’ve tried saline spray, sinus rinses, allergy meds both at night and during the day, decluttering my house so there’s less to dust, etc.  I don’t have carpet in my most of my house, nor do I have pets.  I feel like we’re at the bottom of the option barrel.

 

Which brings us to the RA update.  Since I’ve been having all these infections and I have to stop my meds for the infections each time, the rheumatologist and I decided that I’d just go on a little hiatus from appointments until all this sinus stuff gets taken care of.  I have a schedule of pain relievers and a physical therapy plan to follow at home and a bunch of steroids I can take if it all gets too bad (that is if the ENT will let me take them).  I’m scheduled to go back to the rheumatologist again in January.

 

Now for the neurology update (because I’m full of fun that way): one of the test results got mislaid or misfiled or something.  One test came back completely normal.  The neurologist thinks my brain chemistry has changed again, leaving me with new and different migraines.  I have a schedule of supplements to follow and new lifestyle changes to make: more sleep, no caffeine, no alcohol, stress reduction techniques to learn, & another headache diary to fill.  I’m scheduled to see the neurologist in January as well.

 

All that aside, we’ve had a pretty good summer.  The kids have been to three kinds of camp: scouts, art, & church.  We’ve gone camping and done our own fireworks show and gone to LegoLand.  We visited my parents for a week so I got to hang out with my best friend and see our other good friends baby again.  I’ve done all the obligatory resting that all of that activity implies so I’ve been reading lot.  I love reading on the Kindle; it has made reading more enjoyable since it really cuts down on my hand pain.  🙂  I’m thinking I’ll get the kids a Nook later in the year so they can do kids books on theirs.  🙂

 

And that is all the updates I can think of for now.  Hope y’all are having a good summer! 🙂

Neurologist appointment

I went in to see a new neurologist today.  I picked up my scans, carried in my paperwork, sat in the crowded office, and surprise, surprise got called back at my appointed time.  Smile

The nurse came in and we chatted about how much we love our rheumatologist (we go to the same one) and what we’re taking to help us with our RA.  Then the doctor came in.  She’s young, pregnant, and very focused.  She spent nearly 45 minutes with me, more time than anyone else ever.  First she told me that my MRI was “stone cold normal.”

She asked loads of good questions about my symptoms, not just when did they start, but how long each specific one lasted, what order they came in, etc.  She asked which drug I was taking when these various things happened.  I’d brought my Giant Notebook of Health,

which made her very happy, and my Bag o’ Drugs (which she’d requested and apparently rarely do people follow that instruction).

She was also glad that I took notes and was open to taking supplements as a course of gentle action in the next few weeks while we do other testing to rule out a couple things. I also have a calendar of symptoms to fill out (I find the chart code hysterical; I got to make it up). The next batch of testing: another CT scan, this time of the blood vessels in my brain, and an Evoked Potential test, which tests the eye/brain connection.  What they’re ruling out I don’t quite know, but she has one big theory and a couple smaller ones to test out.  I’ll see the doctor again in about 2 months, by which time I should have finished the testing, gotten all the results back, and had some time to put data in her calendar chart.