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 22

School, Physical Therapy, West Nile and Blowing S&$% Up!

Mentally I’ve have been in a really good mood lately. Even with trying to put in as much time as possible in the lab while doing four hours of PT every week (okay so yes, I do get that great massage afterwards) it’s been pretty good.  Everyone has been warning me about West Nile virus.  I’m sure it’s because of the immunosuppresive nature of my medication for Lupus and Sjogren’s.  But I have a secret weapon…….Avon’s Skin-So-Soft bath oil.  My grandmother used to cover me with it when I was a child in Savannah, GA.  The sand gnats there would leave their little sandy hovels and search for me.  The only thing that would help was this bath oil.  I still use the bath oil today.  I’ve often wondered what exactly is in the product that works so well.  I actually bought the Skin-So-Soft bug spray that Avon offers now and guess what? The bath oil worked better.

One of the great perks of working in science is knowing exactly how to safely blow things up.  I received a shipment of chemicals yesterday in a cooler with dry ice.  DRY ICE!!!!! I had never done this sort of “bonding” with my kids so I grabbed a couple of 1.5 ml microfuge tubes I found sitting in the back of one of my drawers.  The first tube didn’t blow up.  I didn’t use enough ice.  The second one, though…..KA-BLAM! Immediately my husband and I look at each other and say excitedly, “Water bottles!” With our kids there could be up to a dozen half empty water bottles around our house. We found one and immediately stuffed that puppy full of dry ice.  And I had to laugh because my husband and I were maniacally preparing the next “bomb” while our kids huddles in the corner of the yard trying to keep the dog from being injured.

It took a total of 15 minutes for the water bottle to blow.  We stood back and watched it expand like a hard shelled balloon.  Then just as we had decided it wasn’t going to blow, BOOM! This was no tiny boom.  My ears rang for a few seconds.  Mike and I looked at each other and immediately turned to the kids and said, “Hurry up and pick up the pieces and get inside.” We started practicing “No officer, we didn’t hear anything.”

We all went to bed laughing and carrying on.  And all I could think was how much I really want to be done with this degree so I can blow up more things with my kids.  When I started this journey, I didn’t truly understand just how much I would standing on the sidelines of their lives.  That has been the most distressing sacrifice I’ve made so far.  I have to just keep telling myself it’s almost over.  Then make sure it really is over soon.

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 14

Physical Therapy: Not just for Grandma any more.

I’ve done physical therapy more than once.  Most of the time I found it to be rather useless. I would be the youngest person in the room by 40 years.  It was all very basic and not a challenge to be seen.  The place I’m going now, however, is a completely different story.  I used this group  several years ago and received great care.  They helped me get back into the gym for the first time in several years.  I knew immediately once the subject of therapy was broached I wanted to return.

Oklahoma Physical Therapy (Spine Sports and Rehab) is the kind of place where you don’t see many “old ladies” doing their PT.  Most of the patients are under the age of 50 and most are in pretty good shape.  And challenging?  Very challenging.  And that is good.  This past Monday I graduated from basic abdominals to level 1 abdominals. YEAH!!! I had a very strong feeling of accomplishment (and some other feelings that I won’t go into here.)  It’s amazing how many different exercises there are and they are all exercises that can be done at home with minimal equipment.  I have six stretches involving my legs and hips that start the workout.  Honestly, I never knew I could stretch in quite so many different ways.  Next was abdominal (this will probably change on Thursday with the change from basic to level 1) followed by 3 lb hand weights (flies and arm raises).  After these it’s on to the exercise ball for “supermans” and glutes.  Until Monday, I finished up with lat pulldowns, triceps and rows done with exercise bands.  Most of the exercises were 3 sets of 20.

Monday, the physical therapy assistant I like to work with asked me how I felt and if I wanted to add exercises.  I told him I’d like to start working on strengthening my legs and learn more exercises on the ball (my new favorite exercise tool.)  He added three leg exercises; leg lifts, abductors and adductors (they call these the “Jane Fondas”), and two more abdominal exercises on the ball.  The first one is called a “ball walk-out.”  On this one, you’re bent over the ball with your hands on one side and your feet on the other. You gradually “crawl” forward until the ball is under your knees. I’m not sure why this is classified as an abdominal exercise because after my 3 sets of 5, every muscle in my body was protesting (and shaking and really wanting to know what the heck I was doing to them.)  The other abdominal exercise was called a “tomahawk.” I’m not sure I can really describe this one to where you can understand it but I’ll try.  You sit on the ball next to the wall so you can brace your feet against the floor and the wall.  Adjust the ball so that it’s under the small of your back. Do a half crunch so your shoulder blades are off of the ball.  Use one hand to support your head and extend the other arm straight up beside your head by your ear. Move the extended arm forward to your chin.  From your ear to your chin and back is one rep.  This sounds really easy but trust me, it’s not. I was craving a tomahawk by the end of it for some revenge on my trainer.

Today was very interesting.  I had aches in places I haven’t felt in several years.  It’s a good pain, though. Sort of.  I’m going to try doing the new exercises myself tomorrow morning but not the full workout.  If I did, I wouldn’t be able to do anything on Thursday.

If anyone had ever told me I’d be doing the exercises I’m doing less than a year out from surgery, I’d have thought it crazy.  It’s like a new phase of my life is beginning, one where at least a four-pack is possible.  Now if I could do something about this surgical scar………..