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.

 

One of those days

July11

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.

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………