Everyone’s got something wrong

English: Hand sanitizer with aloe.

 

“Bad times have a scientific value. These are occasions a good learner would not miss.”

 Ralph Waldo Emerson

 

It’s been one of those weeks where you just know the universe is trying to teach you a lesson.  If only I knew what it wanted me to know.  My husband’s sciatica has gotten much much worse, so he’s limping around and in so much pain he can hardly sit down.  My eldest son had a light cough last week and this week is having to have breathing treatments because it’s looking like he has walking pneumonia.  I have a double sinus infection and an ear infection and I’ve started coughing, too plus I can feel my last infusion wearing off already.  Now our youngest says his throat is very sore.  Only my middle son is left unscathed.  You don’t want to come to our house this week. 😦

 

What’s a wife/mom to do?  I’m too exhausted to think at this point.

 

  1. Sent my husband off to the massage therapist and now on to the chiropractor.  Next it’s back to the doctor.
  2. My eldest is seeing the doctor again today for more special breathing treatments (though we had to get him up at 11pm and 5am to do them at home, too).  We’ll find out today if this is bronchitis or pneumonia.  I’ve already got emails out to his teachers to send missed schoolwork home to us.
  3. I’ve given up hope of having my infusion next week, though I need to call in and let them know so they can give my appointment away.  I’m using hand sanitizer by the bucket-full.  I’ve canceled as many of my commitments this week as I can.
  4. Sent my youngest off to school with throat lozenges in his pocket for lunch time.
  5. Pray that my middle kid remains germ-free and remind him he has hand sanitizer in his backpack pocket (and maybe put some in his lunchbox tomorrow, too).

 

Throat Lozenges

Our other new best friend (Photo credit: incurable_hippie)

 

Another sinus infection

I’ve been fairly fortunate with my Orencia infusions insofar as side effects go.  I’ve been on it since October and this is my first sinus infection.  I’ve felt a couple trying to start in the past few months, but I’d been diligent in the past about rinsing my nose out as per the doctor’s orders and resting up.  Not so, this time.  I was super busy last week with book fair (oh how I love talking to kids about books!) and PTA events (serving BBQ at the Fine Arts Night my kids were singing, dancing, and signing at) and a kindergarten field trip to the planetarium (Did you know there are kids out there scared of outer space?!  I had no idea.) and the church’s regional weekend (I signed on to do crafts, which is far and beyond easier than working in the kitchen), so I wasn’t really ever home long enough to do more than eat, sleep, and change clothes.  Hence the sinus infection.  😦  So tomorrow I go in for yet more antibiotics and hope that this clears up before my next infusion.  I also finally get to check in with my OB/GYN about the menstrual issues.  I had blood work drawn last week for this appointment.

TMI, perhaps

Menfolk beware: this is a post about feminine things.

 

La canne feminine auXVIIIe sicle

Not this kind, but space provided for the squeamish. (Photo credit: Wikipedia)

Ladies, do any of you RA’ers have any experience with early onset peri-menopause?  I’ve been having wonky periods (light, late, non-existent, all of the above! And no, not pregnant.) after years of having heavy, cramp-filled ones.  I’ve called the doctor about it, but her nurse just passed on the info that I’m too young for that (which is not what I’ve read in my online research), but that I could come in next month for some hormone level tests.

So if you have any information you’d like to pass on, please do below in the comments or you can email me at:

a w a m i b a @ g m a i l . c o m (without the spaces).

Thanks y’all!

 

mental health

I am starting to think that what I really need is a mental health blog.  Or to combine all my little blogs into one big blog so I can stop repeating myself from different angles.  Who knows.

A friend of mine committed suicide this weekend.  We weren’t close lately, hadn’t been for a couple years, but once upon a time I lent her all my books about depression and gave her my number and talked to her about my experiences with therapy and brain chemicals that just don’t work right . Through her, I lent her husband the book “How to Help When Someone You Love is Depressed” that I’d gotten for my husband ages ago.  She still had a few books that hadn’t made it back to me.  I guess they never will.  These aren’t the thoughts one generally shares, I know, but somehow they are the ones my brain is holding onto right now, instead of blubbering insanely about how sad it all is and how hard I tried to help her and how I failed to keep up and how I regret it and how I am never ever the person I mean to be when it comes to other people and how I should have kept up with her when she went silent.  Because once I get started with them, the tears start, they don’t stop.

THIS YEAR.  I CAN’T TAKE THIS YEAR.

One of my good friends from junior high died this last year: breast cancer.  My ex-boyfriend from high school was accused of sexual misconduct with a student and I can’t quite bring myself to admit that I really do think it’s something he did, because then I’d have to admit out loud to my family and other people how awful he was (in college I had girls email me out of nowhere and ask me to join their therapy group because ….) and they don’t need to hear that.  Then there was my mom and the hospital last summer. And another ancient friend’s husband died unexpectedly from pneumonia.  Another one’s brother died and I somehow totally missed it and I feel awful about it, but don’t know what to say now.  Another friends son had a terrible car accident months ago and is only now walking.  And then the husband of a girl here in town that was one of those friends-of-a-friend that you always hear about that you feel like you know even though you’ve actually never met them?  The one you’ve heard dozens of stories about?  Yeah.  Her husband died trying to save someone after a car accident. And now this.

 

I told my spouse that I needed a Self Care day.  He was busy, of course, because we are NEVER not busy these days, and said the wrong thing and that made me cry more.  He apologized and said the right things later but I ….well…  I am broken at this point.  And thanking God or the Universe or Whatever I’m Believing In This Week that I asked the doctor for those anti-depressant, anti-anxiety meds way back in October.  Because I don’t know what or who to believe in these days, but SCIENCE seems like a good thing.  Quantifiable, you know.  I don’t, I just don’t know.  Nobody is available on a Saturday to talk, so I’ve been making due with a bunch of movies (The Decoy Bride I need to own and Wild Targets I’m going to rewatch and A Good Woman I’m in the middle of, but it’s kind of bland so far despite good reviews – I’m thinking I just don’t like Scarlet Johanssen) and a bottle of wine and a box of chicken quesadillas.

 

Thank you for listening and thinking about me.  I know we don’t know each other in person, but you mean the world to me, you really do. *big big hugs*

 

Physicals…

Physicals, or check-ups as I like to call them, are so delightful.  This time around they had a totally new computer system that wanted to know my height and blood oxygen levels and whether I was left or right handed.  Woo hoo.  Apparently I’m an inch taller than I think I am.  I pointed out that the last time I’d had my height measured I’d been 18 and barefoot, but the nurse did not care.  5 foot 5 is my new height. It’s in the computer so it’s official. Well, okay, then.

 

Other new things:

– More blood work.  Fasting.  Tomorrow.  Oh yay.

– I need to lose at least 20 pounds.  Me: “Yes, I know, but it’s very hard to lose weight when you spend quite a lot of time not being in any condition to exercise properly.  Isn’t there anything else we could try?” Doctor: “Since you have a heart condition….”  Me: “Wait, what?!”

-I have a heart condition.  Undescribed.  Awaiting some test results.  No big deal.  Umm….

– (back to the weight loss woes) “… you can’t have drugs to help that along.”  I can, and should: walk, do low-impact exercise, swim, etc, and eat healthy.  Which I’m already doing, but I’ll try harder.  Maybe I’ll just travel everywhere with whole grain bread and tea and carrots.  Why not?

– The doctor checked EVERYTHING, even my swallowing and listening to my throat at rest.  I have no idea what that was about; he’s never done it before and frankly at this point I couldn’t handle anything else.

– My left side is way less limber than my right side.  (Wherein I realized that my rheumatologist never does range of motion checks any more.  Hmm.)  Arm, leg, protesting.  Which is weird because it’s my less grouchy side, at least the side that generally hurts less.

 

I think that’s it.  More than enough.

 

Elevator Talk

Today’s prompt is about what you would tell someone in 30 seconds (or a minute, or two) about your blog.  Another prompt with a timer needed, how exciting!

 

30 seconds: My blog is about my health deficiencies, specifically about how I deal with being a chronically ill mother of three boys.

One minute: My blog is about my health: I have rheumatoid arthritis and migraines, but they aren’t exactly what you think.  One is an autoimmune condition and one is a neurological issue.  Mostly I talk about how I deal with being a chronically ill mother of three boys.

 

Two minutes: My blog deals with my life as the chronically ill mother of three boys.  I talk a lot about the misconceptions of my illnesses, how RA is not osteoarthritis and migraines aren’t just headaches.  I blog about family and the way I juggle health and wellness with the daily realities of being a mom to small, active people.  Mostly I just tell it like it is: sometimes messy, but always striving for normalcy and fun.

Open a book…

…and write about the word or passage you open to for 15 minutes.  Ahh, freewriting, how I love thee. This is supposed to be totally unedited: expect a lot of tangents, please.

 

My computer is set up under a bookshelf, with two more off to my left close by.  There’s another two here in the room, though not close by, and one in each bedroom.  Finding a book is not going to be the problem: choosing a book will be.  I’ve decided to do the old “grab one without looking” and get one from above my head.  Here it is: “All in My Head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening headache.”   Oh how funny: It’s totally mishelved.  Health books normally live in my bedroom.  That shelf should have been a combination of writing, parenting, and books of sci-fi anthologies.  The “doesn’t fit on its proper shelf” shelf, in other words.

 

Now for the passage: it’s page 142 and she’s gone to the doctor with this unrelenting headache and this particular one has prescribed biofeedback.  She’s making cracks about how if she had something like diabetes she could sue for malpractice if she were told to just wish her illness away, but with a headache they (the doctors) thought this was perfectly reasonable.

 

I like this segment.  I feel this way a lot about the RA, in fact.  A lot of the time the doctor just says “well, you need to be less stressed.  rest more.  don’t try to do too much.”  How does that help me in any way?  Is he going to come watch my kids and clean up my house and keep up with my life for me while I’m resting?  The doctor will say “I don’t know why the hip bursitis won’t go away” and well, neither do I!  It just doesn’t.  I’ve tried PT, I’ve tried injections, I’ve tried lying down more, moving around more, meditating on the pain leaving my hip more.  Does any of it work?  Not particularly.  No.

Here’s the thing: I know I have things wrong with me, I know they are not just “all in my head.” But we are so often treated that way when we have RA.  I can’t help it if my hand flared up last week and it hurt like hell for two days just because I took a dish out of the dishwasher wrong, but then on the third day the swelling went down and it felt normal again.  I wasn’t making it up when I said that it hurt.  But with RA sometimes things do hurt just like that and then go away just as fast.  Sometimes they don’t.  My knee, for instance.  I feel down on it weirdly three years ago and it has never been the same.  I still have that area of complete numbness on one side where I know something went dreadfully wrong.  The whole leg moves differently now.  I get bursitis in the hip on that side now.  But has anyone ever scanned it to see if there’s something going on in there?  Nope.  “It healed nicely” the doctor said of the wound on top of the skin and left it at that.

 

Wow, fifteen minutes went by fast!  I had more to say, but the timer has gone off and my shoulder is telling me that typing time is over, too, so I suppose I must go.  Be good! 🙂 See you tomorrow!

 

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

Another day, another post

Here’s where I admit defeat: I am not loving all the prompts.  I feel bad about that, but I don’t have a lot to say that’s on topic and other things I’d like to say instead most days.  Today’s prompt wanted me to talk about what’s right and good about the health communities I’m part of.  Well, here’s all I have to say about that: they are full of good & supportive people and I don’t get to spend as much time around them as I’d like because I have a full time job keeping up with the munchkins & their activities.

 

Speaking of the munchkins, I’ve been working overtime this week preparing for my son’s birthday party.  We sent out invitations last week shaped & photoshopped to look like Pokemon cards.  I’m thinking they’ve mostly gone astray, as I’ve only heard back from the two parents that I personally talked to about the party.  That being said, we invited 16, are prepared for about 12, and will probably have just 6 kids.  You know how it goes.  I’ve spent hours online researching Pokemon (which my kid loves & I know oddly little about outside of the fact that they are playing cards).  I’ve come up with games that can be played both inside or out (there’s rain in the forecast, but we rarely get it when they say we will) and this afternoon I’ll go buy supplies for them.  We’ve also got well child check-ups this morning, playgroup after at the park, and a new TV coming in this afternoon, so it’s shaping up to be a super busy day.  Hope I have enough spoons. Smile

 

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

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.

The depth of winter

“In the depth of winter, I finally learned that there was in me an invincible summer.”

–Albert Camus

After spending a couple days checking and re-checking my blood pressure and looking up many scary things online, I got to see my primary care physician.  I brought with me my chart of blood pressure readings (scary bad the first day, great the day I had no kids home, up and down a lot today), my chart of medications I’ve just stopped taking and the ones I’m about to start, and my biological-family-medical-history chart.  The doctor took a look at the numbers on my chart, the ones in his computer going back the 7 years I’ve been visiting him, the results from two echocardiograms (one more recent, one ancient).  He told me that while yes, my numbers are slowly rising, he’s not especially worried about it.

I thought I was home free as he typed a bit on the computer, stopped for a moment, and looked at me.  “Wait, what’s your family history again?”  I knew this was coming, so I was prepared: my biological mom has high blood pressure and some sort of heart issue, as do three of my four half-siblings (the ones older than me by 5-15 years)the fourth is younger than me by five years).  One of my siblings has had two heart surgeries, another has had three strokes in the last three years.  Two of my biological aunts have died of heart attacks, but both were 50 years old or older.

The doctor visibly gulped.  “Well, that changes everything.  With such a strong family history of cardiac problems, we’re going to have to take steps to make sure you don’t have the same problems your siblings have had.”  He went on to explain what kind of medicine we’d be looking at, as well as lifestyle changes I’d need to make, and when & how often to take my blood pressure for the next three weeks. I, of course, asked if all this was necessary because as scary as my family history sounds, I still thought that since my numbers seemed okay over the years that we shouldn’t have to take a big step like this.  He said “You want to live, right?”  That’s what sold me.

I left the office with a prescription for the lowest dose of the least little blood pressure medicine you can get.  I was told that the major side effect is fatigue, but that should be gone in about 4 weeks.  Fatigue.  Ha.  I laugh at fatigue.  (Or as my best friend said: “Maybe you’ll get over your insomnia and get some sleep finally.”)

I spent the next couple days explaining things to my family, not just about my blood pressure, my stress levels, and my new medicines, but also to my parents about the RA, its effects on my life, the things they see and can’t see.  It was a good, but surreal set of conversations, but in the end the thing that most struck them  came down to this one thing that I had to say: I am determined to be cheerful, no matter what is thrown at me.  I can’t change any of that, but I can always choose to have a good attitude.  In the depth of my medical winter, I can have an invincible summer in my soul.