August 3

Guess Where I Am????

Once again, I find myself in a physician’s waiting room.  I know I say this quite a bit but I feel very lucky to actually like and respect the physicians on my team.  Especially this one. It’s my neurosurgeon. The one that held my puke bucket for me all those years ago.  Funny side story; when I was on the phone with Mercy Central Scheduling for the two fusion surgeries last November, the nurse on the phone asked me which surgeon would be the lead and when I told her Rob Wienecke, she said, “Aw, he is so sweet. I used to work for his daddy when he was alive and practicing and I changed many of Robbie’s diapers.”  I’m sure Rob would be thrilled to hear that.  And no, I’ve never shared that with him.  But it does make me smile every time I see him.

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.


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.

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….

April 13

Getting Close……

Just when I say things can’t get any crazier………I have GOT to stop saying that!  A name change is probably coming for the blog since I am so close to graduating, I can almost taste it and it tastes REALLY good!  This week I received official permission to walk in the Spring graduation ceremony and I will defend my thesis in  July.  Things are getting down to the wire.

So how is this affecting my health?  Its not easy to keep going.  I almost believe the permission to allow me to walk at graduation was my mentor’s way of throwing me a bone so I could hang on long enough to finish.  My biggest issue comes when I know I should stay and work about four  more hours and get things done a day early and I really want to but my body isn’t letting me.  Yesterday is a good example of this.  I late getting in, could barely keep my eyes open to get the kids to school so I went home and back to bed for a while.  I got in about 11am and went to work.  By 4pm, I was ready to pass out again.  I had to cut my day short and save things for today which is going to put me behind a day.  I would have had the results of my experiment today but now, I’ll have to come in this weekend (tomorrow) for a bit and probably won’t get results until Monday because if I come in on Saturday, it can only be for a few moments.  I must have the two days with relatively limited activity to “re-charge” my batteries to get through the next week.   I see a counselor here on campus usually once a week. I missed this week because the weather has been very wet and rainy and that doesn’t work for me at all so I haven’t had the energy to walk over to her office.  We’ve corresponded by email though and that has helped.  She is helping me work through things that I do which I think are helping me but are actually sabotaging my efforts to get through this sane and in fairly decent health. 

1) Keep pushing through no matter how bad you feel.  This adage was ingrained into my psyche by both of my parents.  No matter now sick you might be, you should suck it up and keep going.  Last year, I kept going until I nearly ended up in the hospital.  When I took the fall semester off while waiting for my surgery, I went home August 14th and slept for the next six weeks.  Literally.  I have no memory of  last summer; also literal. I pulled out an experimental plan I wrote in May and I had to completely re-read and think about it due to having NO MEMORY of writing the plan. When you’re that worn out, you need to stop or what  happened to me will happen to you: your body will MAKE you stop.

2) Doing things for others are more important than doing things for yourself.  Blame my mother, my grandmother and my Christian upbringing for this one.  It was drilled into me constantly that the best way to get to Heaven  was to be selfless and focus on the needs of others.  My grandmother always had several irons in the fire and some of my fondest memories are accompaning  her to nursing homes, Eastern Star meetings and service days and church events.  She was always going and it killed her.  She moved out here to OK about a year after we did but didn’t like it.  She got really angry when people would say, “Talk for us, we love that accent.” She was 100% Southern Lady and found it rude and distasteful to be put on the spot like that.  While she was here, she was hospitalized and nearly died from pulmonary embolisms.  Both lungs were 95% blocked with clots.  She spent several weeks in the hospital recovering and was put on a maintenance plan to keep them from returning.  About a year after that, she could take it no more and she and Granddaddy moved back to Savannah.  Eight months later, she was dead. She promised us she would keep up her regular doctors appointments but instead she jumped right back in with all of her charity activities and ignored the signs that the blood clots were returning.  We spoke to her the last time the evening before  my mother and I left to visit Savannah.  She died the next day.  All those childhood influences left out a huge part of the lesson: if you don’t take care of yourself, you won’t be able to help anyone else.  I have spent that past three months learning to say “NO” and to close off certain parts of my life for a while at least.  I’m learning to put up some healthy walls and not take on other’s problems and try to solve them. 

3) As a typical type A personality, I expect things to be done right away, done correctly and done without whining.  My management style was formed by watching my father during his years in management.  He learned how to manage by serving 22 years in the military.  He always showed his co-workers and employees great respect as long as they did their job.  In “his world”  there isn’t room for whiners and complainers.  But what constitutes a whiner, a complainer?  Is a person whining or do they have a valid reason for not being “Johnny-on-the-spot?”  I’ve had to work on having patience not only with myself but also with other people.  Patience with myself is probably the harder of the two.  When I compare myself to “normal” grad  students and I’m not being vigilant managing my inner dialogue, I can get negative self-talk going in no time at all.  This usually takes on the voice of my mother but that  is beside the point.  As a child, I was always the kid who bugged her teacher for a glance at the grade book so I could write down my grades and calculate my average in the class.  I felt like I had to be perfect or there would be a punishment in store. It was an amazing amount of pressure and stress.  I can remember doing this as early as fifth grade.

 I have to work hard to remind myself that its okay if things take me a little longer than most.  My mentor has helped quite a bit with this.  He is always reminding me that it doesn’t really matter how long it  takes to finish just as long as I do my best. He is constantly reminding me to be patient.   Patience with other people is a stumbling block with me too.  The way I figure it, if I can go x,y,z, then other people should be able to be present and do their jobs too.   I have had to totally adjust my thinking to only worrying about things that directly affect my project.  If someone not doing their job directly affects my ability to do my job,  then I get to say something and believe me I do.  Otherwise, I need to let it go.  That is hard for me.

I am working very hard to keep it together, rest when I need to, be okay with needing to rest, and take it one day at a time.  I try not to fall into old traps of attempting to plan out my life weeks in advance.  I used to sit down and plan away but that just isn’t possible now.  Making promises to my family and friends is a rare thing now.  My middle daughter will ask me when I make her a promise, “Mom, is this a promise you can keep?” That was a sort of slap in the face when she first said it but now, I actually stop and think about it then give her an answer.  The great thing is that I can  say, “You know what, I don’t know if I can.” And that is okay with her.  She’d rather me be honest with her than promise and let her down later.  It’s been a great reminder for me.   Now if I could find good reminders for the rest of my life!