you may say i’m a dreamer…

Some of you may have read posts from my New Normal series back in the Fall.  If so, you’ll understand how I could be so motivated and end up doing very little.  About a week and a half ago, I had probably the worst day I’ve had with fibromyalgia.  It took 4-5 days to get past that flare, but that was complicated by a sinus infection and a stomach thing.  I’m not sure if it was a stomach bug or if it was side effects of 2 doses of a fibro drug that I took.

All that to say that one doctor has now given me a fibro diagnosis.  In the meantime, I have bloodwork, a skin punch biopsy, an MRI, and a glucose tolerance test scheduled to continue to look for causes of neuropathy in my feet. (And now I think in my arms?)  We did an EMG in January because of the feet thing, and again I was told, “Looks normal!”  Yeah.emgThis being-motivated-but-not-able on many days is problematic for me.  I’m a daydreamer and a worrier, so having lots of time on a couch obviously doesn’t help me balance my imagination with action.  Here is my imagination when I’m not on the couch:

We got a fantastic new sporting goods store in my little town.  Walking the aisles, I know I’m going to go hiking and rollerblading and probably start cycling.

I take my daughter to get a library card.  Standing at the check-out desk, I see myself writing lesson plans here on Thursdays.  Too bad I can’t bring coffee.  I’m also going to check out really cool books that impress the librarians with my excellent choices.

Tsh Oxenrider shares tips on book writing, and oh, man!  I need to set some deadlines for myself on that devotional for teachers.

The Children’s Council meets at my house.  I’m going to revamp this Children’s Church thing, and it is going to be the best.  So much more Jesus-centered, and the kids will beg to go on Sundays.

I wake up.  Today’s the day that I will have clean surfaces and buy the perfect living room floor lamp that only costs $30.

Derek Webb tweets about his wife’s new album.  Why do I not know all their music?  I will fit in a songwriting session on Thursday, too — right after I vacuum the studio lobby for the dance teacher.

We discuss Chapter 2 of The Case for Faith in Sunday School.  Next week, I will have caught up on the reading and bring in more research on related scriptures and give a presentation on sponsoring a child through Compassion International.

Pinterest shows me a baby sweater soaked in sweetness.  I’m getting out that yarn tonight and learning to knit for my niece due in March.  No, I’m not.  I’m calling Tracy to help me finish this baby quilt that my grandmother started.  I stopped working on it a year ago.

You come to my house (theoretically) and tell me about your new project.  I am so interested.  I want to help you with that.

I just found this picture of myself at my sister’s wedding rehearsal last month.  The hands say, “I am a bridesmaid.  I hold flowers.”  The eyes say, “Where are my children?”presentnotpresentIs there such a thing as Life ADD? If so, I have it.  Can this woman learn to be more present where she is?  Can she choose to set aside some things in order to actually obtain others?  If so, I’m going to try it.

I’m setting some very specific goals to be completed by the end of this school year and share them with two women who I know will check in on my progress.  I have to make the most of the days that I am able and be content to purposefully rest (physically and mentally!) on the days that I’m not.  Here’s to less mental wandering and less subsequent guilt over shoulda-woulda-coulda.

31 days of a new normal {day 29} the long, boring one where i tell you what the doc said

This post is part of a month-long series.  You can read the rest here.

Today. was. FABULOUS.

  • I had the pleasure of taking the kids to school.
  • I enjoyed a whole day to myself.
  • I received quality care from a doctor and his staff.
  • I ate (gluten-free) chipotle salmon, rice, & steamed broccoli for lunch.
  • I  purchased birthday presents at the best big box store that ever was.  (Target.  Duh.)
  • I rifled through piano sheet music in a warehouse for a couple of hours and bought a huge stack for 70% off.  Some of it was even for me!
  • I had a peppermint hot chocolate.
  • I came home to a huge box marked “heavy.”
  • I attended a school book fair, and…

I didn’t hurt today!

Way back when, I set a limit of 200 words on each post for this series.  Then I spent more time editing than I did writing, so I upped the limit to 300 without even telling you.  So sneaky am I. Muah ha ha ha. Now I don’t even care about a limit, but here is the shortest worthwhile synopsis of the fascinating conversation I had with Neuro Doc #2…

ND2 explained the Lyme results to me, and I understood some of it.  He was glad to hear I will to be seeing an Infectious Diseases doctor but recommended I do my homework before I go.  He is glad to get me in ASAP with one he feels confident in if I don’t like my guy.  I asked him outright where he stood on the Lyme controversy, and he sidestepped the question a bit.  He worked with Lyme patients a good bit when he practiced in the Northeast and feels it’s very unlikely that I have it.  Simply put, “Lyme patients get worse, and you’ve gotten better in the last two weeks.”

He was quite interested in the skin sensitivity that I experienced for about two weeks and did a quick skin test.  I had no unusual sensitivity today, and he mentioned that shingles are a possible explanation.  Apparently they can affect the nerves without showing up in the skin.  It seemed to be a “I’m throwing this out there so you’ll know we’re covering the bases, but I’m not pursuing this one” kind of thing.

We talked again about my prior MRIs, and something in the way I described the symptom that prompted the neck MRI caught his attention, whereas last time it didn’t stand out.  We scheduled an MRI to look at the whole spine, because Multiple Sclerosis is still an option.  I’m finding that my obsession with word choice is an advantage in this journey if I allow it to be.

ND2 confirmed that fibro is on the table, but we’re not ready to label it as such because “it’s a diagnosis of exclusion.”  Yeah, me and all 4 of my readers know about this.

The gluten-free diet was of little interest to ND2.  Maybe it’s working, maybe it’s coincidental.

I’m so encouraged by today.  I’m a week away from an ID doc appointment and an MRI, and that’s two steps closer to an answer.

In other news, my mom is awesome.

That’s a lot of g-free, y’all.

31 days of a new normal {day 25} when bad news is good

This post is part of a month-long series.  You can read the rest here.  You know you want to.

Good news!  I tested positive for Lyme Disease!

That’s how a text message started that I sent to a few folks this afternoon.  I intended some humor behind it, but I am genuinely excited to have some new data to plug into the equation.

Only problem is, whichever test they did is quite unreliable.  Of course, I knew that when I requested to be tested for Lyme. Tomorrow I to am supposed start antibiotics, I guess for just-in-casies that the test is correct.  An appointment is being made with an infectious diseases doctor who will explain more to me, and if that is any time in the next few days, I think I’m going to wait on those antibiotics.  This has been going on since February as best I know.  I can wait a few more days. I’m not digging 3 weeks of antibiotics for no reason.

The blacklegged tick (Ixodes scapularis), the ...If you’re wondering how I could be bitten by a tick and completely miss the rash and flu-like symptoms… I think it’s possible.  The flu was in full swing in February.  Also, I have another lovely autoimmune disease called dermagraphia that causes hives from head to toe.  I could have been bitten on my scalp and missed it, too!  Still unlikely, but it could happen.  Are ticks even out in February?

If this can be diagnosed, will that rule out Fibromyalgia?  Probably not.  I am keeping my appointment with Neuro Doc #2 for this Monday.  We’ll have a grand time discussing symptoms that have popped up since I saw him last, gallons of bloodwork results, and maybe his son’s piano skills.

31 days of a new normal {day 20} thick skin

This post is part of a month-long series.  You can read the rest here.

Shout out to all the peeps with thick skin.  Mad props, ’cause you go hard.

Ahem.  Back to my other voice.

I had two interesting experiences today when sharing with friends about my new normal this year with symptoms and doctors and search for help.

“Oh, yeah. *sniff*  Fibromyalgia. That’s a catch-all for when they don’t know what’s wrong with you.”   Well, that does seem to be true in some cases, but why does it feel that someone is writing me off personally when they’re only dismissing a diagnosis?  I’m certain my friend wasn’t saying that she didn’t believe that I hurt or am fatigued or randomly feel like my skin is on fire…  Heck, I don’t even know if that’s the right diagnosis for me, but maybe I was offended for people who are actually being helped by fibro treatments.  Still processing.

The Holistic Approach of Alternative Medicine ...

The other reaction was a bit more helpful, perhaps because she didn’t make it about me at all.  She simply shared about her own story of chasing doctors with conflicting opinions and finally landing on a chiropractor who practices holistic medicine.  Most of me is “all in” with the theories that she spoke of, and yet a tiny part of me is a bit skeptical, never having experienced it.  I hope she didn’t feel judged in the least by my response, like I did with the above reaction.  I hope she felt appreciated for sharing something that might help me.