January 22

Back from the “Mostly Dead” (at least it felt like it!)

One of my favorite things to do, EVER, is laugh.  I will go anywhere and do anything I’m able to do if I know there will be laughter involved.  All those movies that critics pan for having no plot but massive amounts of toilet humor, I’m there.  And my favorites of these movies all have one thing in common: Mr. Mel Brooks. This man is a genius.  He’s also not afraid to make fun of himself and this weird, wonderful world he lives in.  My title today echoes one of my favorite lines from The Princess Bride.

Miracle Max: See, there’s a big difference between mostly dead, and all dead. Now, mostly dead: he’s slightly alive. All dead, well, with all dead, there’s usually only one thing that you can do.
Inigo: What’s that?
Miracle Max: Go through his clothes and look for loose change.

I feel like I have been floating through life for the past 6 weeks being “slightly alive.”  My lupus has been flaring up to the point I ended up in two ERs over the Christmas holidays, the first time the Saturday before and the second time the Friday after.  That whole week was horrible.  And while some of the symptoms have subsided, many are still trying to throw a wrench in my plans to finish my Masters.  My joints have decided to join in the fun with a gusto I envy.  If I could only channel that energy into something useful, like driving to work….

I had truly hoped by this time to be done with my Masters thesis but instead I was stuck in bed over the winter break, unable to do much at all.  However, there were a few days that allowed me to work on my thesis.  I just need more days to get something done.  I always though writing the thesis would be so easy.  You just take the experiments you’ve done and write it out in long hand, right?  If only it were that easy and actually that part of it WILL be fairly easy.  I’m having issues writing my introduction and literature review.  You never know when you’ve got enough.  And don’t even get me going about formatting issues.  I’ve said more bad words opening up my thesis and seeing the formatting all screwed up than anything else in this process.

And, after all that’s gone on the last 6 wks, it’s about to get even crazier.  Since I can’t stay in this Lupus flare for much longer without organ damage taking root, my rheumatologist is adding in a second immunosuppressant drug, methotrexate (MTX).  This drug was first used many decades ago (and sometimes currently) for some breast cancers.  They won’t  be giving it to me in the same dosage as those first cancer patients but it will be enough.  I’ve been told to expect nausea, vomiting, diarrhea and my personal favorite, hair loss.  Yes, hair loss got me more than any of the others.  It took some time before I could actually say it out loud.  Of course, the amount of side effects differs from person to person and I will be getting the drug by injection (which I have to do) which they say brings less side effects with it.  I lost some hair when I first started the Plaquenil but I’ve been able to control it so far.  I’m hoping the MTX will be similar.  But just in case, I now have a stock of three cute hats (not baseball caps although I also have several of those) and four scarves that I hope to use.

This could also be a definitive time for me.  For years, well, since middle school probably, I have “hid behind my hair.”  While I may not have taken care of my body (wake boarding, trying to ski at 31, scuba diving, and not to mention using my pregnancies as the opportunity to eat any and everything in front of me) I have ALWAYS been fairly meticulous with my hair.  I generally didn’t take too many chances with it.  Now, I’ll have to rely on something else.  Maybe this will be the time I finally throw off all the things that make me WANT to hide and I’ll be able to shine from the inside instead of from the glossiness of my hair.

But then again, there are always wigs…………

Until next time, light and loving hugs.

We gave ourselves a great night out at the Lupus Gala put on by the Oklahoma Chapter of The Lupus Foundation of America.
We gave ourselves a great night out at the Lupus Gala put on by the Oklahoma Chapter of The Lupus Foundation of America.


August 19

Cramming 18 hours into 12 hours

That is my life!!! Most people living with Lupus require 10-12 hours of sleep a night. I need right at 10-10.5 hour a night to not be dragging all day.  This makes getting anything done very difficult.  With the kids back in school and Riley having to get to school by 740am, I have to be in bed with my eyes closed by 9pm.  At least now that school has started, I have a good reason to get the kids back in bed by the same time.  I’ve been trying desperately to work on my thesis at night but the level of concentration just isn’t there. I still haven’t quite worked out just when I’m going to do that.

This weekend was supposed to be a “writing” weekend but it turned into a sleeping and resting weekend. I end up being so exhausted by the end of the week that Saturdays are usually mostly written off.  Yesterday, I didn’t crawl out of bed until 1pm. Factor in the rain which makes my joint ache like nothing else and I didn’t leave the house until 5pm to run to Target.  Today I was going to try my best and get to church this morning with Riley and Rae.  After not going to sleep until 330am, there was no way I was going to be able to get up and going at 930am.

So today, nothing got done. Now I have to work at not beating myself up for what I can’t get done.  That is probably where I have the most problems. I don’t like saying I can’t do something. I still have that voice in my head that says I’m being weak.  If anyone has any idea how to get rid of that voice, I’d love to hear it.  But for now, to keep from having to listen to that voice, I’ll watch season 7 of HOUSE, MD that I found on sale yesterday.  Time to just wait out bedtime.

August 8

Sleep. More important than you’d think.

From high school health class until I believe, yesterday, I’ve been told how important it is that I get good, restorative sleep.  Back in high school and college, sleep was not on the top of my list. As a young mother, sleep was so far on the back burner, it’s a miracle I got any between motherhood, school and work. Now, however, 10 hours of sleep is a must. On the days where I haven’t gotten 10 hr, I’m a wreck.  After last night, let’s just say it’s a miracle if I remember to breathe.

The toughest thing to overcome in this journey is sleeping light. After so many years of dealing with aches and pains, I tend to sleep very lightly. Part of my brain is always on so if I awaken, I can figure out why fairly quickly. The down side to that is I sleep so lightly, I can wake up from the slightest sound. This morning, the dog woke me up at 430am by scratching an itch. He was in his bed on the far side of the room.  I finally got back to sleep about 6am then the roofer called at 7am to find out if someone would be home so they could start replacing our roof today. (As a side note, they still hadn’t showed when I spoke with my husband about an hour ago.)

For me, the repercussions of a bad night of sleep are many. Focusing on what I’m doing in the lab is so difficult it actually drains my energy.  I’m trying to be available for another lab member who is learning one of my protocols but since I am running on empty, the prospect of me getting anything else done independently is growing from slim to none rather quickly. I have my experiment for today written up but every time I get going on it, there is a question to be answered and I’m off the track.

For my personality type, this is something I am still struggling to learn how to deal with.  I want to “push through” and keep going but the consequences of that can be additive putting the rest of the week in jeopardy.  One can never underestimate the energy it takes to make careful decisions and stop yourself from doing too much when you’re basically running on adrenaline.

Okay, so my break is now over and I’m going to crawl back over to my lab bench. At least I can look forward to cake for the boss’ birthday on Friday. Cake always makes everything better.

August 3

Guess Where I Am????

Once again, I find myself in a physician’s waiting room.  I know I say this quite a bit but I feel very lucky to actually like and respect the physicians on my team.  Especially this one. It’s my neurosurgeon. The one that held my puke bucket for me all those years ago.  Funny side story; when I was on the phone with Mercy Central Scheduling for the two fusion surgeries last November, the nurse on the phone asked me which surgeon would be the lead and when I told her Rob Wienecke, she said, “Aw, he is so sweet. I used to work for his daddy when he was alive and practicing and I changed many of Robbie’s diapers.”  I’m sure Rob would be thrilled to hear that.  And no, I’ve never shared that with him.  But it does make me smile every time I see him.

Today, I’m exactly 9 months from the second surgery.  To think back to that day (granted, I have no knowledge of much until later that evening when I became VERY aware of what that surgery entailed) and compare it to now.  So much has happened during this time.  I was saved from a wheelchair by the surgery only to be hit with Lupus and Sjogren’s three months later. It’s been a lesson in patience (I’m still not that great with that one), acceptance, and resignation.  And I don’t think for only me. Mike has had some things to reconcile and my poor mentor has gotten to see someone else learn many of the lessons he learned a few years ago with his own illness.  The children have grown in ways I wish they hadn’t needed to but they are becoming wonderful women because of it.  Riley has acquired empathy not usually seen in 11 year old children (with the exception of her little sister who still endures her wrath nearly every day.)  Rae knows what is going on but is still learning to phrase her words in a less harsh way.  She thinks on a very mature level and loves to update her vocabulary but is still learning that words, even when said in love, can hurt.  Plus it’s hard not to giggle a little when she comes up with words like “inappropriate” but with her speech impediment comes out “inapwopwiate”, usually when she is tired. The last few months have changed all of my girls and in some ways it saddens me.  Caity moved home from New Orleans partially because of me.  I’m not deluded, I also know a certain young man had something to do with the decision but I know I played a part.

I’ve learned that getting upset, angry and obstinate just don’t help things.  Denial ends up hurting me not only physically but mentally and emotionally.  There are several Olympians who deal with Lupus and that was something I had a hard time with at first.  How can they be so physical and perform so well when I get cross eyed reaching for something on a high shelf?  I had to actually sit down, have some quiet time and think it through.  All of them are several years downstream from their diagnosis which means they are probably in remission.  I am far from that point.  9 months does not equal 12 years by any means of measurement.  I have to deal with Sjogren’s as well.  And yes, I can tell a difference between the Lupus pain (it’s joint pain) and the Sjogren’s pain (it’s connective tissue pain.)

Every day I endure physical therapy seems to help my mental attitude. I should probably have said “survive physical therapy.” But I have a great therapist and I’m pretty much left to myself to do my workout. If something hurts, I let her know and we work through it to see if I’m doing something funky with body positioning or if it’s just not time for me to be doing that exercise yet.  I’m having real issues with the last one added.  It’s an exercise where I’m on all fours (my knees LOVE this one) and while holding “neutral position” which is not really as comfortable as it sounds: abs tight, hips rotated to the rear to form a straight back and glutes tight. Does that sound neutral to you??? Anyway, holding that position you raise one arm in front 10 times with three sets, switch to other arm, then do each leg.  The arms are fine.  My right leg?  Different story.  The first fusion surgery where the rods were placed  left a screw on my right hip that is palpable, especially since I lost 30 lb.  The muscle lies over the screw and the rubbing of the muscle on the screw causes “irritation”.

I just got back to the exam room and I’m staring at my latest x ray.  Everything looks the same to me.  I’m always floored by what I see.  Before the last surgery, I was floored by the damage I saw.   Now it’s seeing how straight my spine is. To me, it’s a miracle.  The images are so clear, I was a little afraid you’d see the Hostess Mini Donuts I had for breakfast sitting there.  But no, those have moved on, so to speak.

Yes, it’s been a long 9 months. But I truly feel like I got just a little bit of my life back.  Almost makes me want to move my birthday from June to November but then I wouldn’t get to take all those great early summer vacations for my birthday.

The appt is over. Everything was fine except for the aforementioned screw.  He said we could remove it and cut the rod off at the next screw up.  That scares me a bit even though he swore it would be okay.  All I wanted was a simple cover to dull the edges of the screw.  Apparently there is no such thing.  We decided I would keep coping and see if building the muscle helps.  If not, it would be a simple outpatient procedure about an hour long.  I just don’t want to step foot back into a hospital, outpatient or not, for a while.  I enjoy just driving by and waving.