Three-Day Weekend!

I have crazyheavy stuff going on. While I have been trying not to let it get to me, more of it must be leaking out than I thought, because people keep sending me little happy things because they know I’m stressed (I love you, Mom!). Hopefully having an extra day off will help me rest and recoup this weekend.

I started sorting out the furniture that will be in the front bedroom (my craft room! And guest room- eventually) and found my heating pad and my stuffed toy raven that I sort-of sleep with, which was a happy find. I then spent another half-hour looking for a lamp that I had already unpacked and has been on my office desk for three weeks. D’oh! So today I buy a lamp and a clock for the front bedroom.

I am a little loopy today. I woke up at 2:30 for no good reason and watched the pretty moon over the pond. I then slept on the couch for an hour from 4:30-5:30, took my meds and crawled back into bed for one hour before work. So I got about 6 hours of broken sleep. Also, one of our neighbours was playing drums at 2:30. It did not wake me up, and they quieted down quickly, but, yeah.

I start the adjustment to my thyroid schedule this week. I decided to write this down, since sometimes people ask and it’s a pain to explain, and hopefully writing it out will help me to remember.

My usual daily pill schedule approximately runs thus:

• 5:30 a.m. – thyroid medication with a glass of water, stagger back to bed.
• 6:30 a.m. – breakfast: daily RA pill #1, fish oil #1 for cholesterol/omega-3s, no-baby pill. Sometimes also allergy pill (if I wake up stuffy) and usually Tylenol arthritis x2 for stiffness/pain.
• 11:30 a.m. – lunch: multivitamin, calcium + D, fish oil #2, red yeast rice x2 #1 also for cholesterol, iron supplement for anemia, b complex for fatigue, folic acid to counteract my MTX.
• 6:30 p.m. – dinner: fish oil #3, red yeast rice x2 #2, x2 Tylenol arthritis if needed, RA daily #2.

Any meal at any time may also be accompanied by a lactaid, if I am taking my life in my hands and having something cheesy. I do love the cheesy! Also, sometimes a muscle relaxant before bed if I have been especially active or if pain is keeping me awake.

I have mostly internalised this pattern by now, with the difference of slightly later morning hours on weekends, and the occasional running-out-of-pills-without-noticing. I have successfully avoided the only-two-meals-a-day glitches that happened while moving, which messed me up a few times since it meant missing out on evening pills. Unfortunately, the addition of MTX on Saturday morning has thrown things off a bit, since I add 6 pills to breakfast, and then do not take the b complex or folic acid that day. Even that I have been adapting to, until the thyroid adjustment.

Starting this Sunday, I only take a half-dose of my thyroid meds in the morning. I am going to try and be smart and pre-cut some pills and put them in a little container so I don’t have to try and cut a tiny pill when I’m not awake. I will probably also label the box “Sunday only” or somesuch. Of such exciting things is my life made. Unfortunately, I have broken my habit of flipping my pill bottle each morning once I take my pill. Since I am usually about as awake as, oh, say your average rock, I don’t always remember if I have actually taken my pill. Flipping the bottle is supposed to be the sign that I actually took it- then I flip it back at night when I brush my teeth before bed. I need to work on getting back to that.

(This is not, by the way, at all foolproof. I have gotten up, taken out a pill, drunk a glass of water, flipped the bottle and gone back to bed, only to later find the pill still on the counter. Close, but no cigar!)

Random question- how do YOU spell anemia? No matter how I spell it, it seems wrong. My spellcheck does not help, because every spelling is apparently correct. Is this a regional thing? U.S. vs. British English? I know that I should use my brainmeats for more useful things, but it keeps cropping up.

I hope that everyone has plans for a lovely weekend!

I love this picture- it makes me want to go to an aquarium. I love aquariums!

Did I mention that I’m just a little loopy today?

Image from We Heart It

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ARRRRGGGHHH!

So. Annoyed.

I’m actually really glad that I have already started looking for a new doctor, because this last visit was fairly insulting. First he tried to call me out on how my stiffness isn’t lasting all day the way I reported six weeks ago. “Uh, that’s because you told me to take the OTC arthritis medication daily and I have been.” Then, I pointed out that my gastro issues are a known side effect of my current meds. And he agreed. WTF!?! I am so mad that I went through a bunch of tests and another prescription for this. If he had said this two months ago, I would have been fine and dealt with it, but right now I’m furious. Then, while we’re discussion this major change in my treatment (yes, I’m starting MTX) he actually starts BACKING OUT THE DOOR to go to the next patient. Seriously! We barely spoke for five minutes! Yes, I know he’s very busy and was behind schedule, but I am done. If I hadn’t already been looking for a new doctor, I sure would be now. What a terrific job of making my health concerns seem completely inconsequential, guy. If you can’t even spare five minutes for a patient then screw it- I’m going somewhere else.

I am incensed and frustrated and unhappy that I have to start this new treatment, even if it is necessary (and, sadly, it really is).

But I’m really glad I never gave this doctor a link to my blog.  😐

Update: still mad. And when I asked about the tremors in my hands, all I got was “that’s not a common side effect”. Well, is it an uncommon one? Is it just from muscle fatigue? Could you at least PRETEND to care or be curious?!

But hey, there’s good news. My anemia is doing fine. Yay.

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Catching My Z’s

Incredibly frustrated with doctors and diagnoses today. I finally got my lab results and am having one of those moments when what one doctor thinks is fine would probably upset one of my other doctors. Also, my doctors do not seem to be communicating with each other particularly well at the moment, so I am trying to pass info back and forth and feel like the little kid trying to mediate between cranky grown-ups. All this on top of filling out reams of paperwork for my new doctor before my appointment Monday, and just being tired and frustrated with doctors and tests in general. My cholesterol is still through the roof, and while I could be doing more to manage it, I’m almost getting to the point that I want to say “just give me the damn pill” and get it over with. I can’t diet too much more than I already am, and my body just isn’t letting me exercise. I’m so frustrated I could cry.

On top of all this I am questioning the insides of my head again. I’ve now had a second doctor offer me something to help me rest. I’m very resistant to treating my sleep issues with prescriptions. My hypothyroidism messes up my sleep. The medication I take for my hypothyroidism messes up my sleep. My RA messes up my sleep. The medication I take for my RA messes up my sleep. See the conflict here? Plus, I have a family member who became dependent on sleep aids in order to sleep at all, and I’m afraid of going that route. At the same time, having a few restful nights of sleep would probably help all of my issues enormously. I keep hoping that getting other things under control will help me rest better, but I’m not sure that I can wait indefinitely for this to resolve itself. I already follow a number of guidlines to help minimize insomnia which do help, but even when I do sleep I wake up exhausted.

I am just having a cranky, frustrating day. In good news, my pain is much more manageable than it has been the last few days. In bad news the nosebleeds are back and I’m off the nasal spray for two more weeks. It is cold again and I am tired. Really looking forward to seeing my friends this weekend- I need the downtime.

Image from We Heart It.

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News

Well, first some good news:

• My rheumatologist and I seem to be communicating better, which is a relief.
• I lost some weight this week!
• Good friends will be in town visiting this weekend- yay!
• I had my first cortisone shots, and they seem to be helping!
• No nosebleed today for the first time in two weeks! Whee!

And now some not-so-good news:

• My Aunt just lost her father. To lose my uncle and her father so close together must be horrible. Unfortunately, I don’t think that we’ll both be able to go to the memorial in Georgia. I may try to go on my own if family will help me getting to and from the airport. We’ll see. It would be both sad and wonderful to see Columbus again.
• My inflammation is significantly worse, which isn’t really a surprise but still disheartening. My doctor keeps increasing the number of months it may take for my current treatment to have significant effect (first it was 1-3 months, now 4-6). We agreed that if we don’t see improvement in the next 4-6 weeks then I will step up to methotrexate (MTX). Again, not really a surprise, but I had hoped for more response to the Plaquenil.

So, yeah, I’ve been terrific amounts of pain, and much more stiff than usual. I felt like I was doing “the Robot” most of yesterday, and while I could lift my hands above my shoulders, I could only do it verrrry sloooowly. I was rather nonplussed at the doctor’s last night when I realised that I had to choose between getting my shots in my neck or lower back. Really? I can’t have both? And when they asked me which area hurt more…? Yeah, that was a much more difficult question than I would have expected.

I opted for the neck, since my neck and shoulders have been so bad, and things are feeling remarkably better today (of course, Prednisone might have something to do with that as well, but a lot of the muscle tightness is easing). However, my lower back and knees feel like they’re on fire, and even my ankles are stiff. I suspect that my lower back and ankles have been like this for a while and I just didn’t pay attention because other things were so much more insistent, but my knees are definitely worse and I hope it’s just due to sleeping funny or tension or the unusually cold weather today.

I do feel like I need to adjust my pain rating- levels of pain that I thought were bad in the past really don’t compare to yesterday or today. A few weeks or months ago I would be home on the couch if I felt like this, but instead I am at work (although it remains to be seen whether this was a good idea or not.) I really need to talk about this with my doctor to make sure we’re using a consistent pain scale. I also forgot to ask him about the tremors in my hands, but that can wait until our next appointment, I think, since it only happens when I’m very tired.

One funny thing- the nurse asked if I’m allergic to bandage adhesive and I said “yes, but do it anyway”. I think that caught them off-guard, but some pink, angry skin is not going to keep me from something that will help chronic pain- it just doesn’t compare.

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Details?

I started to write something and then wondered- does anyone really want to hear this? I try to keep some of the gorier details of my daily life to myself, but I do need to vent this stuff once in a while. So here’s my disclaimer: I will sometimes go into minute detail about the icky things in my life. When I feel this need, I will post a little warning so you can skip if you feel so inclined (if blood is a trigger for you, then definitely skip. Then again, if it is, you probably wouldn’t be surfing health blogs, now, would you?) I do wish that WordPress had a cut tag like LiveJournal does, but ah well. If someone knows of a way to emulate that, please let me know!

So, here’s what’s driving me crazy- in no particular order:

• The nasal spray I take to control my URIs causes nosebleeds if used regularly. The only option is to live with daily nosebleeds (I try to endure this for as long as a can), or stop taking it periodically until things clear up. So I’ve been off for a week, just in time for spring to start and pollen to coat everything in the world. So now I have miserable allergies *and* nosebleeds. Argh!
• I had bloodwork taken twice last week. My arms are only just starting to recover, and the bruises make me look like a big druggie. I am hoping to be healed enough before my next round of bloodwork. I am looking forward to March being over- four doctors (and the accompanying tests) in two months is just ridiculous.
• Speaking of bloodwork- I hate waiting for test results, especially since I am fairly sure they will show that I need to change one of my meds. It’s been a week and I should have results by now- I’d rather start the new dosage sooner rather than later, so that I can adjust. Whee- thyroid!

Okay, my rant has been derailed by Light Fluffy Happiness: a double-chocolate cookie still warm from the oven! It’s good to be friendly with the baristas! (Well, not good for my waistline, but I’ll find some way to survive!)

Image from We Heart It

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