Back from the “Mostly Dead” (at least it felt like it!)

January22

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.

We gave ourselves a great night out at the Lupus Gala put on by the Oklahoma Chapter of The Lupus Foundation of America.

We gave ourselves a great night out at the Lupus Gala put on by the Oklahoma Chapter of The Lupus Foundation of America.

 

Guess Where I Am????

August3

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.

 

Living with an “Invisible Illness”

April19

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….

Another committee….but this one may actually be a good thing

February29

The 2010 Patient Protection and Affordable Care Act passed by Congress “asked” the Department of Health and Human Services to partner with the Institute of Medicine to investigate the public health issue of chronic pain.  In June of 2011, the Institute of Medicine of the National Academies published a new report, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.”   It’s a massive report that can be downloaded for free in PDF form from the National Academies website.  While I haven’t had the opportunity to read the complete report, a few things have already been set in motion that I believe will make a significant difference in the state of health care in this country.

First some facts.  According to the report, chronic pain affects more than 100 million Americans.  The mechanisms behind the pain can vary; migraines, neuropathy, osteoarthritis, rheumatoid arthritis, Sjogren’s syndrome, lupus, fibromyalgia and many, many more.  The economic toll – over $600,000,000.00.  I put it out there this way on purpose.  Seeing those zeros makes an impression.  According to the American Pain Foundation, more than 26% of adults surveyed over the age of 20 reported suffering from chronic pain.  Chronic pain is defined as pain lasting longer than three months. (For perspective, I am just hitting the 10 year mark of daily, persistent, chronic pain.)

The IOM describes the report as a road map useful in researching, treating and coping with chronic pain.  The primary goal of ” providing relief for people with pain in America” will be achieved by  consolidating information on prevention, care, education and research in a one stop arena.  The first step for a goal of this size, however, is to start with people.

This is a monumental task.  But just eight months after the initial report was released, it has been announced that the recommended committee, the Interagency Pain Research Coordinating Committee, has been formed.  The National Institutes of Health (NIH) announced this month that membership will include biomedical researchers, advocacy groups and representatives of those federal agencies whose mandate bring them into contact with patients suffering from acute and chronic pain.   The first order of business will be to find where the gaps are in the past and current research and recommend areas to focus future research.  The committee will focus on consolidating the research being done across the federal agencies and promoting closer collaboration between agencies.  There will also be a focus on creating public/private collaborations.

The committee of twelve will consist of six non-federal scientists and health professionals. There are six additional members who represent advocacy groups, service organization and research organizations.

Usually, I would be wary of a new committee.  It seems like every time I watch the news, someone is forming a committee to study some problem or another when someone just needs to make a decision and implement.  Even here at the university, I am stunned at the need to constantly form a committee for the smallest things.   But this committee is desperately needed.  In Florida, the DEA is trying to close down pharmacies for filling too many prescriptions for pain medication.  They weren’t saying the pharmacies were filling illegal prescriptions, just filling too many of them.  They want to be able to cap how many prescriptions can be filled so if someone walked in later in the day, you could easily be told, “Sorry, we’ve already filled out allotment of prescriptions for the day.”  Why should a government law enforcement agencies dictate how many legal prescriptions can be filled?  Legislatures across the country have tried to pass laws capping the number of opioid prescriptions a physician can write in one day.  Primary care physicians, often the only physician patients in rural areas have access to, are having their licenses suspended and DEA licenses revoked on suspicion of misconduct forcing the physician to find temporary care for their patients while mounting a costly defense.  It’s no longer “innocent until proven guilty.”  They have to prove their innocence.  As a result, many primary care physicians simply refuse to prescribe anything stronger than Tylenol with codeine.  Referrals are the norm.  In Oklahoma, this means driving 1 to 4 hours to one of our two metropolitan areas once a month to visit a pain management specialist.

Pain is a very personal experience.  A person’s perception of pain varies greatly from their friend’s necessitating the need for greatly personalized pain care.  What works for me may not (probably won’t) work for you.  There are many avenues of treatment but the research is not clear on some like massage, yoga, supplements, and meditation.  I have recently started meditating at work for just a brief period of time, usually about 10 minutes, and it has made a world of difference in helping me get through the day.  However, I also rely on an opioid medication to stay productive.  Without the medication, I would not be back in the lab.  I would not be able to even consider finishing my research and preparing to write and defend a thesis.

Pain is variable.  One day, I might feel almost normal but the next day I feel like I would pay a million dollars to be able to leave my body for just a few minutes.  Some days my legs feel heavy and ache all day.  Other days my arms feel that way.

Pain is personal.  My pain is my pain and there is no way to compare it to anything or anyone else’s pain.  In short, this is not a one-size-fits-all problem.  This is why the gathering the research together in a cohesive manner is so important.  This is the perfect problem for one large decision tree.  One that would probably need a large wall in order to draw the entire thing in one spot.

With the creation of this committee, I am more hopeful about the future of health care for those of us in pain.  For those of you that know someone in pain, contact you representatives and ask them to read the IOM report and support more money for research.  On a side note: funding for the NIH and NSF (National Science Foundation) are down by almost half and are not being restored very quickly.  Without funding for these and other federal agencies, the research will not happen and this committee will not be effective.  On behalf of all of us in pain, we would greatly appreciate the support.

Until next time………