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.

July 11

One of those days

More like one of those three weeks.  The main thing that differentiates a Masters degree in a non-science subject and a science subject is the time one must spend in the lab at their bench. I don’t have the luxury of taking home a bunch of books and working there. I have to be in my lab physically. Over the last few weeks, that has been a real challenge. We found out about two weeks ago that the reason I had been feeling so totally crappy for a few weeks was due to a medication issue. I was getting too much of one of my medications. Another cause was the near liter of Coca Cola I was downing every day.  Like my doc said, “When your at 150lb, it was okay. But now that your barely holding 120lb, it’s too much.” I came off the sodas, not even diet sodas.  The only caffeine I can have now is in my iced tea.  That was a miserable four or five days.  Three days ago I decided to try and see if I could just have one.  Two days and three cokes later, I decided just one wasn’t possible.  Back to the iced tea.

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.

June 28

Living with Your Disease, Not Beating It!



I finally came to some sort of peace with everything I’ve been dealing with.  It took a while.  In June, I had a few days early in the month where I had complete peace around me.  Mike was at work and Riley and Rae were in Branson with my in-laws.  It was just me and the dog.  It’s really hard to NOT deal with stuff when you have no real distractions.  I finally had the peace and quiet I needed to absorp what is becoming my new version of normal.  As a former sun worshipper, I can still get in the sun occassionally but not without my trusty SPF 100 sun screen.  I’m also getting used to being outside in floppy hats and long sleeved shirts. If I don’t protect myself, I pay for it.  My skin actually burns as if I’ve gotten cayenne pepper under my skin. I still love to be outside, I just have new requirements.

My energy level is probably my most problematic parameter. I have had to accept that when I wake in the morning and don’t have the energy to get dressed, forcing it and going into work is NOT a good idea.  Mistakes get made, it costs the lab money since the experiments most be done again and most importantly, it frustrates me to no end.   I’m still learning where my limits are and it’s difficult because those limits change depending on many things; weather (temp, humidity), how much walking is needed on a specific day, and which problem is acting up.  Is it my neck?  Is it the lupus (skin, fatigue)? Is it my hips (spondylitis)?  Every morning I’m taking an inventory of what works and what doesn’t and adjust my day accordingly.

Some around me thing I should just power through.  Keep on going! No giving up! They believe that if I keep fighting it, I will “beat” it.  What I need for them to understand is that you can NEVER beat diseases like lupus and Sjogren’s.  You will not win.   All you can do is adapt.  So many self help books have titles like “Beat Lupus NOW”.  I hate those titles.  What they really do is give advice about how to adjust and adapt in order to live your life to the fullest within the boundaries you disease presents.  The “Beating” comes in not letting the disease cause depression or isolation.  The problem with “powering through” is…….IT DOESN’T WORK.  It’s no more than being in denial.  The times I’ve seriously tried to keep going, I’ve ended up being shut down because my body just gave out.  I would get sick and be out for days.

Mostly it boils down to your EGO.  Getting over myself was the biggest part of those days alone.  We are our own worst enemies.  I kept telling myself that there was no difference between  things now and things ten years ago.  I didn’t want to admit that I needed more time off than others or that I needed help.  I HATED asking for help.  Gradually, I’ve learned that its much better to ask for help the first time than to do it myself and screw it up later.  The worst part is being patient with those you require help from.  Occassionally you have to wait for help and I HATED waiting too.  I’ve learned to be much more patient with everyone.

As far as grad school goes……..

Coming back to the lab after a semester off for two major back surgeries was interesting to say the least.  In all honesty, I probably came back a couple of months too early.  But in March, I finally started hitting my stride and things have improved since then.  I had a committee meeting on June 18, which went very well.  However, only two of my committee members were present.  The other two should be back in July and I’ll meet with them privately.  Everything  seems to be lining up.  I have three more experiments, each about a week total for replicates (must always have three or an n=5ish). I have sort of given up being done by August 1st.  It would have been tight if I could have done it and health wise, it wouldn’t have been good.  But all in all, I smell no petroleum products with that emerging and brightening light so it’s looking like a true tunnel termination.

April 19

Living with an “Invisible Illness”

It never fails after a period of time where I have been doing better but relapse and have a few bad days, I get this question, “I thought you were getting better, what is going on? Why are you sick again?” I resist the urge to say something like, “Oh, yeah, I just wasn’t getting the attention I would like so I decided to MAKE myself ill so I could make your life a little bit more difficult.” Since I can’t really provide that answer (because someone would inevitably take it seriously) I thought I’d try and  share a few of the misconceptions I’ve come across in the past few years.

First misconception: A chronic illness only lasts a few months at the most.  You should have a trend of a typical illness; diagnosis, treatment, resolution, just stretched out a bit longer.   “Chronic” is defined as a disease or syndrome lasting more than six months and can last your entire life time.  There is no straight forward mechanism of the disease.  It is as close to a rollercoaster life than anything else I have ever experienced in my life.  One day I can feel great but the next I am not even able to get out of bed. 

Second misconception: Can’t you just take some medicine and be fine? Society seems to believe that there is a pill for everything.  There are exceptions to this but those mostly involved diseases with a higher death rate like cancer.  I can’t help but think the reasoning there is  because you can tell someone battling cancer is sick.  Someone battling Lupus, even something more serious like Lupus nephritis, can look perfectly normal is you see them on the street.  Yes, I take medication to prevent my body from attacking itself but there are side effects to deal with.  My medication can make me nauseous, kill my appetite, and make me even more fatigued than the Lupus itself does.  Since it dampens my immune system, taking the medication can make me more susceptible to illnesses.  The same immune system that attacks my own tissue in the Lupus pathogenesis is the same immune system that protects me from all those viruses and bacterias that can make one ill.  You can’t dampen one segment of the immune system independently. 

Third misconception: The problem is really all in your head. If you “think” wellness, you will become well. It’s all in your attitude.   These kind of people just blow my mind.  If the problem is really in my head, then my blood work would not show antibodies appearing that shouldn’t be there.  I would love to be able to “think” well and all of a sudden, everything is fine. No more pain in my muscles, no more fatigue so bad I can barely drive home.  I would get to spend time with my kids doing all the things they love doing instead of making them each pick a weekend and trade off doing things because Mom gets worn out too quickly to do it all.  If it was all in my head, I wouldn’t have given up rolling over into the PhD program after finishing the Master’s program.  No one capable of going on would decide not too unless there was a mitigating factor.  For me, that mitigating factor is my family.  If I were alone; no kids, no spouse, no parents left, I might would take the chance because there would be nothing else vying for my time.  But I do have kids, a husband and a father around and I love them with everything I have.  I have missed so much time with them because I was trying to conserve my energy for work and that is like a dagger in my heart.  I am so ready to be able to give them the attention they deserve. 

Fourth misconception: “I know exactly how you feel. I am so tired and my back does kind of hurt.” Um, I don’t think so.  I get this just about every day.  People will ask me how I’m feeling and when I actually try to tell them (because I’m naive enough to think they wouldn’t ask if they didn’t really want to know) I don’t even get my entire sentence out until they try to tell me how they have had this little twitch somewhere that has really given them trouble.  Makes me want to absolutely slap them.  When they have had to change just about every aspect of their life because of their fatigue or their pain, then they can talk to me and maybe we can commisserate.  When they have to plan events weeks in advance so they can ensure they get enough rest for several days before to make it through what ever it is, then we can talk.  When you have to start ensuring at least 10 hours of sleep a night to stay semi-functional and still need to throw in a nap here and there,  then we can talk. 

I don’t want to sound like a “poor me” person either.  I feel very blessed in my life.  I have a wonderful husband who I can call and say “I need to come home and go straight to bed. Please deal with the kids tonight” and he will.  I have children who have seen me struggle though the years and understand that Mom is sick and has her ups and downs. They are always ready with gentle hugs.  I have a college freshman that will fight to the death for me in any situation.  (And she has nearly pounded her little sisters before when they wouldn’t get it quick enough that Mom has had enough.)  I know I am blessed by having a great team of doctors with whom I communicate very well.  I have a support system most would die for.  But I still feel like I deserve to have a few moments of what I like to refer to as a ‘why me’ moment.  I don’t think I would be human if I didn’t occassionally stop and feel this way.

Just this week my husband and I found out there was one more thing in our lives now where we will have to adjust to this disease that I live with.  Finding this out just tore me to pieces.  It was one of the few times I actually just cut loose and lost it for a while.  It took about 30 minutes for me to get it together a bit and I’m still really pissed off about the whole thing.  I saw my counselor Tuesday afternoon and luckily she told me it was okay to be angry, just to not get stuck there.  Part of the reason I wrote this blog is to help me NOT get stuck here.  I’m trying to release my frustration.  I don’t really know yet if its working but I posted a much shorter version of this on my facebook page last night and  slept like a  baby for the first time in two weeks. (One of the startling things is that despite my constant fatigue, I don’t generally sleep well since I wake up in  pain several times a night.)

So please excuse the diversions but I think everyone needs to understand that there is no standard pathway for the way the “invisible illnesses” will proceed.  One day I might seem fine (and even then I can almost guarantee that I’m not “fine”) and the next day I will wake up and not be able to even crawl out of bed.  That is just the way it is and there is not much I can do about it but hope that eventually the treatment will start working and I will feel better for a while.  And that is the thought I’m going to leave everyone with. 

Until next time….