Challenging myself to live life to it's fullest despite my Lupus, Sjogren's Syndrome and Spondylitis
How is everyone doing???? I’m so excited. Do you know why? As of May 30, 2012, I was officially DONE as a Master’s student in Biochemistry and Molecular Biology. I defended my thesis on the 22 of May (which was also my wedding anniversary) and passed. But on the 30th, I took my final edited copies to the graduate office and turning in the copies. All I’m waiting for now is for the library to call to tell me my bound copies of my thesis are ready to be picked up as well as my diploma.
The 30th was on a Thursday. On Saturday, my team, The McCue Crew, walked the Walk for a Cure Lupus Walk. We had about 17 people on the team. The weather was great for it. We arrived at the zoo about 730 am. We were supposed to be finished by 9am which is the time the zoo normally opens. So we’re sitting there, I’m at my booth giving out materials from the United Pain Foundation, when a Sheriff’s Deputy comes over and orders the crowd to leave the zoo. We all moved to the parking lot and crowded around to hear what was going on. Apparently, during the storms the night before, a large tree branch had fallen over the walls of the cage - of R-E-D W-O-L-V-E-S!!!! A bit ironic since this particular animal has the Genus and species name of Canis lupus. It took 1.5 hours to catch her an get her back into her enclosure. Needless to say, our walk didn’t start at 8am like it was supposed to. At 9am, the 5K race started. One of our State Representatives was walking around with a bull horn, keeping everyone updated. Right before the 5K, which was to take place across from the zoo at Remington Park, OKC’s horse racing track, the rep comes over to our location and says, “The 5K is about to start and there are no red wolves in sight at Remington so head that way.” Mike and I were going to try to complete it but after standing around for that long, it was going to be a miracle if I even finished the walk, which was just 1 mile. Eventually we were allowed to re-enter and the walk began. After the walk, I sat for a while at the table I set up with the USPF materials displayed. Several people took things but not as much as I would have liked. I would have also liked to stayed longer but I was exhausted.
The month of June was very exciting for several reasons. First, my husband had Sundays off (rare) so we would be able to make it to church unless someone became ill. Second, the next week I would be attending my very first scientific conferences. Every few years a meeting of the ISHAS (International Society of Hyaluronic Acid Scientists) was held. This year, it was held in OKC so I needed no airfare or motel room costs and my mentor paid for my admission. I was going to present my first poster as well. The day following I was up attempting to get dressed for church (I was so excited and pumped to be able to go and enjoy the service with the distraction of worrying and fretting over how I should have been home studying and writing) when I began to feel really ill. Dizzy, shaky, nausea and narrowing of field of vision. I remember getting up and walking to the doorway of the bathroom in our master bedroom and telling Mike that I was dizzy and didn’t feel well. Then everything went black. When I came too, Mike was beside me asking me where I was hurt. He thought I had hit my head but all I knew was that my ankle was really hurting (10 out of 10). He helped me put on shorts and a tshirt and took me to the closest ER. Turns out my potassium (K+) was really low and the break was at the distal head of the fibula in my ankle joint.) Later that day, I was supposed to be at a cocktail party kicking off the opening of the conference. Instead, I was at home with my leg elevated trying to make it on my normal pain medications. Despite the fact that I was supposed to be at my poster for the poster session, I wasn’t able. I couldn’t put any weight on the foot (despite the fact that I didn’t really want to because it hurt) and there was no close parking. Someone would have had to push me in a wheel chair the whole way. I missed the entire conference even though it was in the same town.
Sunday will be three weeks of wearing my “super boot” and not putting weight on my ankle. I will return to my orthopedic surgeon Monday morning for instructions on how to start gradually moving to weight bearing. In the meantime I am very irritable and slightly bored with so much I need to do and no ability to accomplish them. Very frustrating. Finally, I asked my oldest daughter to take me to Hobby Lobby for crafts to do. I ended up buying rhinestones (fake) and blinged out my super boot.
On that note, I’ll let you go for now. I do promise I will get back to regular writing soon! Especially since I really don’t have much of anything else to do at the moment.
I am so happy to announce that I will defend my Masters thesis near the end of the month. I am going to have a committee meeting on Wednesday where they will say “yea” or “nay” on whether or not I’ve done enough to deserve a Master’s degree. I’m fairly certain they will say yes (hoping and praying it’s a yes) then I hand them copies of my thesis and wait for a week while they edit and make suggestions. They will give me those hard copies back at my thesis defense. Then if I pass the oral defense, I am given until June 3rd to turn in my thesis to the graduate college. It will be sooner than that though because we’re having a conference in downtown OKC June 2-June 5.
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!
Yes, there is such a thing. And my life is VERY, VERY foggy right now. It seems like all the autoimmune diseases have a “fog” related to it; fibro fog, RA fog, etc. It all means the same thing though; you are losing every bit of short term memory you’ve ever had. I packed a lunch bag on Tuesday to take to work with me and it still hasn’t made it into the building yet. I guess I will have to resort to putting a note on my steering wheel when I get home tonight.
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.
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.