So a lot of work between now and then and it’s an hour past my bed time.  I can’t wait until I’m done.  Going to have three months off to just sleep! And play with my girls! Lots of time in a pool, I believe. But mostly, I’ll be able to play with my husband! His days off are during the week so we haven’t had much time together since I started.  Maybe the occasional month where he got a Saturday off.  That’s happened about 3 times I think since June of 2009.

My lupus is still uncontrolled but it’s getting better.  I’ve had two infusions of a drug called Benlysta which targets a B-cell proliferator and shuts it down.  Very cool.  I was supposed to have a third infusion but I came down with a skin infection that turned into cellulitis which, if you don’t know if extremely painful and the treatment is even more extremely painful.  It’s on the mend now and I’m hoping I will be able to have my next infusion week after next.  Got lots to do, lots to look forward too…..

And of course, a few more blog posts.  But first, got to crank!

At work, everything gets written down.  I’ve got post-it notes everywhere.  I take notes in all my meetings (which occasionally drives my mentor nuts since his mind works so much faster than I am able to write.)

Today I’m going upstairs to work on the fluorimeter and I’m hoping I can keep things straight.  And to make sure, I’m off to the hospital for a good lunch, since mine is sitting in a refrigerator 25 miles to the north of me.

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.

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.

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.

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………..

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.

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.

The difficulty of this decision making process is made worse for me because I’m trying to focus so much on doing what is best for me. So, if I get up in the morning and I’m stiff and fatigued, do I push myself and go to the lab to see if it works itself out or do I work from home?  Then if I’m home, and I get to feeling better, am I lazy for not going in at that time?  I have noticed that if I get up when I wake up, move around a bit and don’t just lay there and go back to sleep, I rebound much faster.  I’ve also found if I manage to have 12 hours in bed and about 10 of that sleeping, I usually don’t need a nap during the day but just a few minutes here and there to get flat and relax. Luckily I have that capability here at work.

This might seem like a small issue but for me, it’s causing a huge amount of stress.  Am I making the correct decisions?  The fear that I’m not is one layer of extreme stress that is causing issues with my heart but that’s for another post. Until then, I’m just going to practice more breathing techniques.  ‘Cuz breathin’ is always a good thing.

Slowly the side effects are going away. I was having Premature Ventricular Contractions which made me feel like my heart was skipping beats, I was anxious about EVERYTHING even making decisions, and I would shake all the time.  Part of it was the meds and part was the caffeine.  Stress is still not a good thing.  Even watching a stressful movie (Star Wars I: The Phantom Menace, stressful for soooo many reasons) set them off the other day. I had to turn the channel.  Watching my middle child play basketball set them off.  I’m having to learn how to manage my stress in deeper ways than I ever thought I’d need to.

On the school side of things, I’ve met with all of my committee members and slowed down my pace a bit.  I’m no longer trying to finish this summer.  It’s obvious my health just isn’t cooperating and the more I push myself to get it done, the more sick I become.  We’re shooting for September which should be very doable if I can keep going.  Right now it’s all just putting one foot in front of the other.

I’m learning more than ever how much of surviving and living with these diseases is plain old life management.  It’s also about standing up for yourself.  If your family wants you to do something that you know will end up causing issues afterwards, then stand up and say no. If they get mad, there is nothing you can do about it.  One day they will realize you were just trying to take care of yourself.

So that’s where I am right now. Trying to put myself first for the sake of my health.  It’s hard, especially when all your life you were taught to put everyone else ahead of yourself.  But it’s worth it. Because, as the adage goes, you can’t take care of anyone unless you’ve taken care of yourself.