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.

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………..

After a bit of “extracurricular” activity that set me back about a week, I’m finally getting back to work.  The hardest part of this whole thing is learning just when I’ve met my limits when the “punishment” for going over those limits doesn’t hit for several hours later.  Now, as I try to reduce my pain medications and have begun physical therapy, I have a new challenge; determining if the pain I’m feeling is actually pain that needs medication or if it’s something that I can solve by simply changing positions or taking aspirin. (Aspirin has always worked wonders for muscle pain for me if it’s something like workout muscle pain.)

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.

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….