The Complete Disconnect

When my son was a year old, we started working on potty training.  He had an Elmo video he liked to watch on the topic.  In it, various Sesame Street characters talked about “listening to their bodies” when it came to things like hunger, tiredness, doing a #1, and doing a #2.  I really liked that video (despite the fact that Elmo’s voice still rings in my ears), and we continue to use those terms with our now 8 year old son in terms of hunger, tiredness, being sick, etc…

Here’s the problem.  Life in America doesn’t work like that.

As I look back on my life when I was diagnosed with rheumatoid arthritis/disease back in 1996, I now realize I likely brought this on myself.  How?  I didn’t listen to my body.  In fact, I was quite brilliant at ignoring my body.  For example, I was in graduate school in a tough program that was hard to get into.  Almost every day, I saw people crying under the stress.  I worked at a retail store unloading trailers and stocking shelves.  I started work at 4:00 AM.  Until I got RA, I never took a sick day.  I procrastinated and pulled all-nighters.  I didn’t take the time to eat healthy (although I would argue that my definition of healthy back then compared to now was quite skewed and probably wouldn’t have helped me).  And hey, I was in college.  I’m sure I drank too much and stayed out too late sometimes.  But you know, I also realize that life was so much simpler then.  No kids, mortgage, heavy responsibility.

I can now see that a culmination of all of these stresses likely put me into the situation I’m in now.  Did I mention I have 5 autoimmune diseases?

I become more impressed by my awareness of these things every day.  The Paleo Diet has definitely been helpful.  Depending on if you follow some of these dietary experts (Robb Wolf being my favorite), you will also learn about stress, sleep, and other poor choices that impact your daily health.  I’m accounting for my food intake very well.  I know what I need to do to exercise, although I’m not always perfect about doing it.  I think I do a pretty good job balancing my sleep, although I suspect there’s room for a little improvement there.  But then there’s stress.  Stress is a biggie, and often completely out of my control.  And there has become such a complete disconnect in life in America between my 1996 diagnosis and life in 2014, that I’m not sure what can be done about it.  The disconnect is everywhere.

Cases in point:

I work in a low socioeconomic school.  Somewhere around 95% of our students receive free/reduced lunch.  I would guess about 10% of our kids are homeless, and a significant number aren’t sure there will be something to eat at home.  So, corporate America being what it is has been, has infiltrated the public school system in full force.  Teachers are now measured (and in some local districts paid) based on the performance of their students.  Now, I believe that every child can learn, but I also believe that there are extenuating situations that fly all over our school on a daily basis that even the best teacher couldn’t account for.  Examples: Student’s family loses housing and moves in with relative who lives 60 miles away and doesn’t attend school for 2 months that school year.  Student’s father is in jail and mother is working 2 jobs leaving children home alone to fend for themselves in terms of dinner and bedtime (gosh, that happens a lot).  I could provide so many examples of zillions of sad stories, but the point that I’m trying to make is that being in a low socioeconomic situation puts you at a greatly increased risk of many factors that make school harder.  Yet, the only people who take those numbers apart (you know, the numbers that Johnny didn’t pass the statewide math assessment, etc…) are the teachers.  And they can look at those numbers and say, “yeah, Johnny struggled after this XYZ horrible thing happened, but he did learn all of these other XYZ great things.”  Lawmakers, parents, and community folks want to boil people down to the sum of how they performed on an assessment, when really, community needs to wrap their arms around these children, not fire their teachers (who are leaving the profession in droves). Somewhere along the way, people got mislead into thinking that children’s well-being can be based on a test/s.  How did it get this way?

My husband is having a horrible day at work.  He works from home, so pops out of his office in search of a cup of coffee, stressed to the hilt, face ashen, and physically (I kid you not) pulling the hair out of his head.  To keep it simple, he works for a company that fixes communication systems (phones, etc…) for other companies.  His small company has recently decided that they’re too big to keep their “mom and pop” mentality and spent large sums of money on a program that provided metrics (how many problems each employee received, fixed, how quickly they were fixed, how many contacts were made between the employee and the company who was having the problem, etc…) to the “powers that be”.  As a result of this, the “powers that be” within the company have lost connectivity with the employees, despite all of their data.  The workload has greatly increased, as the employees have vast amounts of “paperwork” to do online to drive the data.  Workers are leaving the company, causing even greater workload to those who stay.  Employees are having heart attacks.  And all the while, employees are being told they need to “get used to change.”  There’s no awareness by “the powers that be” that they may be in danger of losing their biggest contract, because “the powers that be” no longer have the connectivity to the employees working that contract.  There’s no awareness of the increased workload or individual knowledge like the employee who just returned to work after a heart attack stayed up all night to fix a company’s system.  He’s just not used to change, ya know.

Sadly, I think a lot of these “measuring statistics that don’t mean much” issues have come from the medical community.  If you have RA, I’m sure you could think of some examples of this you’ve seen and the impact (how long you wait to see the doc, how thorough or not the appointment, willingness to try alternative methods other than “here’s a pill to fix you,” what medications you can/can’t get based strictly on cost and not side-effects, etc…)

Yet, now we have cell phones, Facebook, Twitter, e-mail, etc….  We’re as connected as ever, right?  Well, NO!  Hell no!  We have NO face time with people.  That makes life easier, doesn’t it?  Filter out all of the bad stuff, right?  If I talk to Margaret, who just started chemotherapy, face-to-face I might feel obligated to take her some food or run her kids to soccer practice.  If I follow her on Facebook, I can click the “like” button and comment on how I hope she’s better soon, then back to my own life.  That’s not connection.  That’s not contact.  That’s not even expressing an emotion (yeah, your happy face icon isn’t requiring you to actually express or feel an emotion or hold somebody’s hair over the toilet).  At best, technology is keeping us busy with a plethora of information that doesn’t actually mean anything.  We’re just being duped into thinking it does.

So, where does that leave me?  In 1996, the internet was relatively new, and this stuff didn’t matter.  I rode my bike, I got together with friends all the time, especially ones from work.  I volunteered.  Now, it’s hard to keep up.  I find myself seeking opportunities for my son that normally would have presented themselves in my daily life when I was his age.  Back then, we knew our neighbors and looked out for one another.  Now, they hardly come out of their homes, wrapped up in statistics that don’t mean anything, like the news, Facebook, etc…  Disconnected, disconnected, disconnected!  And I am too.  I sit here and write this blog to an audience I don’t know.  Disconnected, disconnected, disconnected.  As a part of my job, I write reports on kids that analyze data, but can’t possibly summarize the entire person, a cog in the wheel.  Disconnected, disconnected, disconnected.

10, 20, 30, 40 years from now, how will we feel about that?

Hope this is reaching some folks.  If it’s making sense to you, pass it on.  I’d love some feedback!

 

 

Rheumatoid Disease – Relief

Yesterday I got good news about my rheumatoid disease with all inflammation markers normal.  I thought for sure they’d be high given how bad I was feeling, and was preparing to feel “let down” for the first time since going Paleo.

I am just now starting to appreciate how happy I am that my thyroid levels were off (my thyroid will always need to be supplemented as it was radiated and killed off).  I’ve been struggling for a couple of months now with some odd things and have found myself saying to my husband, “I feel like I’ve had a stroke or something.  My brain isn’t working right.”  Today, I’m realizing how worried I’ve been that something has been terribly wrong.  My RA is still doing terrific, and I now have every hope to think that simply increasing my thyroid medication (maybe I need more because I haven’t been exercising or because the generic brand changed at my pharmacy and isn’t exactly the same medication as I had been taking?)  Either way, today I feel an enormous sense of relief.  I think in a few more weeks I should feel like a new person.  I am so unbelievably thankful and relieved!  And I guess it just goes to show that this diet really is working, and something as simple as my thyroid medication being off can have implications for my joints and a host of other things.

Paleo – It’s not my RA

So, as you all probably know, I went bust on the AIP protocol.  I’ve been feeling off for a couple of months now.  In general, my joint pain is increased (still very mild), I’m cold with periods of hot flashes (I’m 41 and have been concerned about early menopause), my periods are more frequent, heavier, and irritating my joints, I’m irritable, disorganized, forgetful, having trouble with word recall, fatigued, not sleeping well, feeling very weak, etc….

I had an appointment with my rheumatologist yesterday (golly, I LOVE him), and I went into detail on my woes.  I asked what menopause does to RA (blood tests don’t indicate I’m going through menopause, but my body is being so weird).  The basic response was that menopause didn’t really explain everything going on.  I then talked about my thyroid, stating that in the past it’s gotten “off” (my thyroid was radiated in 2007, following a hyperthyroid diagnosis of Grave’s Disease, so I now take thyroid medication).  That might explain some of my weird symptoms, and could we test my thyroid.  My doc agreed to test my thyroid citing research that his hospital did.  It found that healthy people with lower functioning thyroids (higher TSH levels) reported more fatigue and pain than folks with higher functioning thyroids (lower TSH levels).  If necessary, he would refer me back to the endocrinologist.

This morning, the good doc called with my blood test results:

  • Vitamin D: 26 (low, should be above 30)
  • C Reactive Protein: 0.7 (0-1.0 is normal)  THIS IS MY BEST EVER CRP SINCE DIAGNOSIS!!!!!  My doc was THRILLED!  This indicates NORMAL levels of inflammation in my body, despite my pains.
  • Sed Rate: 17 (normal is 0-20)  YES!!!  Again, this indicates NORMAL levels of inflammation!
  • TSH (thyroid stimulating hormone): 4.82 (0.5 – 4.5 is normal).  This is VERY VERY off for me.  Anything above 2.0 usually causes me considerable issues. In the past, a 3.8 caused me to not be able to have a bowel movement for over a month.  In this test, high means low and low means high.  My thyroid levels are very low.

Doctor’s opinion:  My RA is very stable, and my increased joint pain is likely from my thyroid level being too low.  Increase thyroid medication. Need to talk to me primary care doc for this.

Good news is, all of my weird symptoms can be attributed to my thyroid (which had been bordering on too high, not too low previously).  Bad news, it’ll take 6 weeks or so to get them back to normal.  Maybe then I will feel better!