A Soliloquy on All Things Medical

Haven't felt like blogging in awhile, but I had a couple of doctors appointments this week, so for those of you who want the latest, read on...

I've been having a LOT of problems with my autoimmune disease the past couple of weeks and it worsened this week. So when I went in to see the back orthopedic surgeon on Tuesday, he said that we had to wait for my disease to settle down before doing anything. He told me not to be a hero though (snort- seriously I am like the biggest whiner ever!)...if my back is still hurting me in a week, just give him a call and they will schedule the epidural. And my back is still hurting. It is, however, MUCH MUCH better than it was, a fact that I am so grateful for. I can walk for about 30 minutes before I start becoming uncomfortable, as long as I walk a moderate pace (which to me feels SLOOOOW). I can stand without much shifting around for about 20 minutes...and with lots of shifting for about 40 minutes. Sitting isn't too bad either, when my SI joints are behaving (my disease can cause inflammation in the SI joints, which seems to be happening every other day or so). So all in all, I am much improved from almost two months ago! Yay!

I saw my rheumatologist today and unfortunately we are adding another medication to my daily routine. I'm already on one immunosuppressive drug and a super strong anti-inflammatory and we're now adding another immunosuppressive drug (seriously, put me in a plastic bubble!). Plus, they hooked me up to an IV and pumped me full of steriods this afternoon to help try and calm things down.

I hate being on more medications.

BUT, I am very thankful that I am not taking these medications for their originally intended use:
one med is a chemotherapy drug (I take a very very low dose) and the other is used for organ transplant receipients. See what I mean? Me <- THANKFUL!!!!

So here's to some prayer and Western medicine...do your thing!

Latest living room picture

Here you go Mom (you really need to get Facebook :) )

Things still to go on the walls...

Wait

I met with the back orthopedic surgeon on Tuesday and the good news is- it's nothing bad. No ruptured discs, no tumors, no massive degeneration. Yay! It is however, some arthritis around that spina bifida occulta (minor) and some inflammation in that area that is impinging on the nerves, hence the pain. So he wants me to wait 4 more weeks to see if it will go down on its own and continue with the PT I've been doing with my chiropractor. If after a month, there is still no significant change, I am to come back so we can talk about doing localized steroid injections into the spine to help with the inflammation. So in one word: WAIT

I've decided that I don't like the word WAIT.

I had a bit of a struggle that day with WAIT. I hurt. I am tired of hurting. I had a "hate" rant on the drive home. I listed all the things I "hate" about the situation I am in. I cried. I got home and called my mom once I had composed myself, which as you all know, doesn't work, because as soon as you hear your mom's voice, it's over :). So I go on and on for like five minutes and at the end, she says "honey, I'm sorry, I didn't understand a word of that". I totally busted up laughing. And that's what I needed. I saw my selfishness. I just received good news from a doctor and I was mad about it. So I asked myself, "what are you so mad about?"...

The long and short of it is I am mad that this is preventing me from being ME. I can't hurry to the teapot when it is whistling LOUDLY when the water is ready, or answer the doorbell in a normal amount of time, or take care of ONE errand in less than 30 minutes...let alone run and bike, and do the 50 million things I like to do at one time. I can't be ME.

BUT (of course you knew there was a BUT coming)

"I have been crucified with Christ, and I no longer live, but Christ lives in me. The life I live in the body I live by faith in the Son of God who loved me and gave Himself for me" Galatians 2:20

That's my identity. I am not defined by how many errands I can run in an hour, by how quickly I can get from point A to point B without grimacing, by how "hyper" or "bubbly" I am feeling (yes those are two recent descriptions of me that I have heard)...I live my life for God, I belong to Him, and He loves me. That's ME. And inflammation in my spine can't remove me from that position.

Very thankful for the perspective that God revealed and for the grace for me to see it. I am also thankful that this is temporary and I admire people I know (Aunt Laurie, Lyle Gurnsey) who are fighting much more painful battles than I am...and they keep their chins up and keep on fighting. Yeah, I am uncomfortable, but really, what do I have to complain about? I belong to God.

I started doing acupuncture treatments this week, in hopes of reducing the inflammation and pain. After two sessions, I think I am walking a bit better, so that's great.

And as part of my PT, I am about to go jump in a pool and aqua jog! Pretty sure I will have the lifeguard take a picture of me in the pool, with my iPod bandana-ed to my head so I don't get bored jogging in the water (or get the iPod wet!)

Here's to progress, slow progress, but progress nonetheless!

Spinonite

That would be spine+kryptonite=spinonite. And I am referring to the amazing powers of my spine to render MRI machines useless.

Today I went to the back orthopedic surgeon. He's great. He pulled up my xrays and explained all sorts of cool bone/spine medical stuff. For those of you who have spent excessive amounts of time in doctors offices/hospitals, you know that it's really interesting to learn about what's going on in your body and why...(plus I've always had this medical geeky side to me...ask Claire, who was subjected to my excited ravings the other day about an article I read about antibodies...it was really cool though...really).

But I digress...

So the back doc said it's definitely my back, not my hips. He ordered a MRI of the lumbar spine to figure out what might be causing the pain. His two big theories right now are 1) turns out I have a congenital deformity in my spine (called spina bifida occulta- no, not 'spina bifida', according to the back doc, whoever discovered the occulta bit, he shoulda thought twice about the name). I already knew this from the hip doc who looked at the xrays. Basically it means that one of my lower vertabrae is weird- instead of the two ends meeting up, one end is actually on top of the other end (like, almost bisecting it), at about a 60 degree angle (I know you can't see it, but I am TOTALLY forming the shape with my fingers for you all right now :) ). Anyhow, lots of people (10-20%) have these types of occultas and it's not a big deal...for most people. As it would happen, I am a medical oddity in a lot of areas (hush) and thus, it may be causing some weird inflammation in my spine or something (although why NOW beats me...) or 2) that I could have a bulging disc....good news there is it doesn't look like anything is herniated (which matches the zero leg pain I have- the big red flag for herniated discs). So back MRI for me.

Once I again, so pleased with the design of the medical center, everything in one (okay one LARGE and spread out) location. I waited for about 3 hours there until my MRI appointment (praise God they were able to get me in today! I was not expecting that).

All the techs I have interacted with throughout this process have been so friendly and kind. Nothing different about today.

Tech Guy leads me into MRI room #1 (oh yeah, this story requires numbering...). The platform goes in the tube, the jackhammering starts, stops, platform moves out, Tech Guy realigns something, platform goes in, jackhammering, platform moves out while they reboot the machine (at this point, I inform him that the digital display above my head has an incorrect weight for me...I did not spontaneously gain 30lbs...), platform in...FAIL. Tech Guy informs me I have broken the machine. Oh quipy Tech Guy.

We walk to MRI room #2 (read, rinse, and repeat on the above, except without the me gaining 30lbs)...Tech Guy informs me I will be receiving a bill for 10 million dollars...

...they load me into a wheelchair (I'm in a hospital gown by the way) because they recognize that it will take me about 3 days to walk across the street to the OR where there are additional MRI machines...wheel me away...I think I looked a bit conspicuous in that wheelchair wearing silver sandals and holding a bright orange purse in my lap...or maybe not ::shrug:: MRI room #3 was a success. AND, they felt so bad about it taking so long that I got my parking fee waived. Saved $9! Nice.

I meet with the back doc on Tuesday to review the results. He said based on the findings, they will probably (hopefully!) be able to pinpoint the source and do a procedure where they inject pain reducing stuff (I wasn't clear if it was steroids or numbing potion) into my back. According to him, I am already on the world's greatest anti-inflammatory (I actually did not know that, I just know that it works...good to know my rheumatologist isn't holding out on me ;-) ), so there's not much else he can do at this point.

On other progress, they got me a close-to-my-office-building parking spot at work, so next week I am going to try going into the office for a few hours- I'm managing/tolerating sitting much much better than I was a week ago. PROGRESS!!!

Standby for more medical drama on Tuesday... ::close with medical drama theme song::

Hand

One of my amazing girls sent me a get well ecard this afternoon, and it literally popped up during a particularly challenging time for me today. In it were these verses for encouragement:

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal" 2Cor 4:16-18

I love when you can see His hand move in your life. I love that He understands that we sometimes need those more tangible reminders of His presence.

::teary-eyed smiling::

In the finished pile...

So besides some telework and movies, my only other activity option has been reading. Here's what I've read in the past two weeks. Please let me know if you have other recommendations!

The 4 books in the Twilight series
Confession- I skim-read because I didn't like them. I don't like her writing style (it did improve somewhat as the series went on), there isn't really much of a plot, and Bella just bugs me. A lot. Sorry to all you fans out there, but at least I now know what everyone is talking about when they ask "Edward or Jacob?".

The Winding Ways Quilt (Jennifer Chiaverini)
This one wasn't the best in the Elm Creek Quilt books, but meets the "just some fun easy reading" description.

The Help (Kathryn Stockett)
This book rectified the damage done by Twilight's one-syllable-word sentence structure. Beautiful, rich writing that made the characters leap off of the page (cliche I know, but oh so true). I love putting a book down and feeling that I have learned something along the way. Thanks for the recommendation Lindsey!

The Great Train Robbery (Michael Crichton)
Kind of like Ocean's 11 meets The Italian Job. Quick read, entertaining, and I learned some random stuff about trains and dog-fighting. Another good recommendation from Lindsey.

Their Eyes Were Watching God (Zora Neale Hurston)
I know, this is a modern classic, but I never got around to it until now. I enjoyed it- love the voice she wrote it in- at first it was challenging to pick up the rhythm of the dialogue, but once I got it down, the story feels like it is singing at you.

The Glass Castle (Jeannette Walls)
Sad, reluctantly funny at times, and a must read. I absolutely love how this memoir was written: honest and unapologetic "this is how it was". I had a hard time putting it down. Lindsey, I am sensing a pattern...

Currently reading: The Good Earth (Pearl S. Buck).

Couches!

So, back in February, I bought a couch from craigslist with the intent of reupholstering it to put in my living room. Well...it's still sitting in my garage :). So I came up with a contingency plan "Musical Sofas".

Here's how it's going to go:

Sleeper sofa in TV room is getting moved to guest bedroom so guests actually have a place to sleep. Craigslist sofa is moving from the garage to TV room and will be covered with something more appealing than the current eyesore 1960s orangish brown tweed that currently graces it's cushions.

So what's going in the living room?

These!!!

I found these online at Macy's (on sale too! love it!). I love the vintage-y yet modern lines. They are super comfy too (although the cushions need to get a bit more broken in!). I have a coffee table in a box (see it in that back corner?), it's waiting for a rug that I ordered back in May (yeah...import issues apparently). I want to make sure everything "goes" in case I need to return the coffee table/rug (although I shudder to think of having to return that rug after waiting close to 3 months for it to arrive!). I'm still searching for throw pillows too...once the rug is in place, I'll be able to really "build" the room up, you know, things that make it more homey.