Rheumatoid Disease – An Update

I haven’t made an update in a while, and that’s sort of purposeful. When I encounter challenges, I like to know the solution before I talk about it.  Unfortunately, I’ve been having a battle for a while now, and the solution is evading me.  Hang on!  This might be a long post!

A little over a year ago, I was 133 pounds and feeling really well.  Then, things started to change.  My RA was a smidge more active.  I was feeling tired and having symptoms like my thyroid (which was radiated and killed off in 2007, so I take supplements) was too low.  At a rheumatology appointment, it was tested, and it was low.  I called the results into my primary care doc, and she increased my thyroid medication.  This seemed weird to me though, as this is the highest dose I’ve ever been on (even having lost all of this weight).  The increased dose helped for a a few months, and then I started showing signs of being too low again… weight gain (up to 149 without changing my diet), my periods were coming about every 24 days (normal for me is 30) and lasting 7-9 days (normal for me is 3-5), my RA was more active, and my thyroid eye disease was too.  My sleep had become really poor too.  My sleep was becoming so poor that on mornings I worked, I was needing caffeinated tea to get out the door.

In December, I had my thyroid tested again as well as my inflammation markers.  One inflammation marker was normal and one was slightly elevated.  This was a huge disappointment, as that hadn’t happened since they normalized 3 months into Paleo.  My thyroid tests showed a normal (at the low end) TSH, meaning my body thinks it’s making plenty of thyroid hormone.  My T4 was at the high end of normal, meaning my medication level was almost too high.  My T3 however, was very very very low. Because of the elevated inflammation marker, we increased my Enbrel back to full dose.

I made an appointment at the endocrinologist’s (who I hadn’t seen since 2008).  My rudimentary understanding of this is that the medication I take (Synthroid) is mostly (maybe all?) T4 and that there are different tissues in my body that convert T4 to T3.  For whatever reason, my body is not doing that.  Why?  The doctor had no answer and said this is very rare.  The answer was to start me on a T3 supplement in addition to my Synthroid.  While Synthroid takes weeks to build up in your system, this T3 med is immediate, but doesn’t last long.  I was supposed to take one in the AM and one in the afternoon.  The morning one was great, but the afternoon one kept me awake all night long, so I wound up only taking the AM dose.

This new T3 med seemed to help for a while, then it almost seemed like it was too much.  I had 2 weeks where my RA was more active than it has been in 3 years.  I was waking at night from pain, although still functional during the day.  I began taking ibuprofen at bedtime, and that helped a lot (although is completely contrary to what I should be doing, as I know ibuprofen sets off my RA.  At some point I’ll have to deal with the ramifications of that).  Two and a half weeks before a new rheumatologist appointment (appt was in late March), I was still feeling poorly, and I was needing to fly to Pennsylvania for a funeral.  Worrying about my inflammation markers and my ability to hold up on this trip, I cut out ALL sweeteners.  I don’t eat tons of sugar, but I do have some non-dairy chocolate, honey mustard chicken, Paleo pancakes with maple syrup, and tea with honey sometimes.  I went cold turkey on them all, and walked into the rheumy’s having had no sweets for 2.5 weeks. 

My inflammation markers showed one normal, and one a smidge high (sorry, I don’t have the numbers…. the test they used changed anyway, and doesn’t run on the same scale as previous tests I had done).  The smidge high one was less high than previously, so I guess that’s good.  Why?  I don’t know… more Enbrel, no sugar?

The next week, I had a follow-up with the endocrinologist.  My T4 was still at the high end of normal.  My T3 hadn’t really moved from being really low (although I was told that it drops out of your system so fast that the time of day has a lot to do with it).  My TSH was low now (0.22) meaning that my body now thinks that I have too much thyroid hormone.  This doesn’t make sense to me as my T4 is in the normal range, and my T3 is still very low.  Course of action is to stay on the T3 and decrease my Synthroid.  I’ve been doing that for almost a week now.

The good news in that my weight is down to 139, but I fear that may be because I have too much thyroid hormone.  I am starving (also a sign of being too high) and am eating a little more than I usually do.  Over Easter weekend, I blew it on the no sugar and had a piece of Paleo applesauce cake 3 days in a row.  That actually seemed like it had an immediate poor effect, so I might be onto something with the sweets.  I am now on day 3 with no sweeteners again.

So, my RA, my thyroid eye disease, and my general feeling of well-being is not the greatest as of late.  I have some plans to address it further once summer comes (I don’t work in the summer).  I am thinking this is diet and/or stress related.  I am also wondering if this means that I am eating something that I shouldn’t be or I need to be eating something that I’m not.  I stopped taking supplements almost a year ago (except occasional magnesium).  I have now started them up again (vitamin D, fish oil, and turmeric).  When summer comes, I am going to try to do Terry Wahl’s version of Paleo (which includes 9 cups of veggies from 3 categories daily).  In the meantime, I’m going to plug through the rest of this school year and keep my fingers crossed. 

To end on a positive note, one exciting thing in our lives that I hope to post about soon…. we got solar panels last week.  They’re on our roof, but are not yet attached to the grid, so we’re not generating power yet.  I’m sure I’ll have some interesting things to say when that happens.

Love to you all!

Rheumatoid Arthritis – Priorities

It’s been forever since I wrote a blog post.  I’ve been chugging along, had a great summer, have been feeling good, am doing some experimenting with foods, supplements, etc…  But save that for another day.  Priorities!

For 10+ years, I’ve been thinking about going to see an alternative doctor (functional medicine, naturopath, whatever).  They’re so expensive, I routinely talk myself out of it.  At this point, however, I have some really detailed questions about my body, and I think I might even have some idea as to what’s at the heart of my particular RA, but I don’t understand it very well.  I think now might be the time to find a doctor.  I want one that looks at me not as a sick person, but as a person who is lacking health.  How do I get back the health? 

I’ve been googling Functional Medicine doctors, and I found one with a good foundation in Paleo, and she herself has suffered some of the same illnesses that run in my family.  I plan to make an appointment this week.  In the meantime, I got on her website and downloaded a 15 page intake form.  It asked tons of questions, some of which I never thought about before.  One set of questions asked me to rate priorities in my life from 1-8.  After that, it asked me to rate how I felt I was doing with those priorities (rating 0-3).  I don’t want to copy hers exactly, but I’m going to throw some things out there, some from the questionnaire and others from me.  How would you rate them as a priority (1 being high and 8 being low) and how would you rate how you’re doing with them (0 being not even on your radar and 3 being great)?  Would you add anything else to the list?

  • ___ Longevity
  • ___ Personal Appearance
  • ___ Appearance of your home/car/etc…
  • ___ Relationships with friends and family
  • ___ Sex life
  • ___ Independence
  • ___ Health
  • ___ Maintaining a job/career

Keeping in mind I had a different list, I was rather pleased with how mine came out.  There wasn’t a discrepancy between my priorities and how I was doing with them.  For example, I think appearance was last (8), and I also scored it a 0.  I’m not very happy with my appearance, but it’s also not a priority.  I don’t beat myself up about it.  I don’t routinely get my hair cut, I don’t wear make-up, don’t wear jewelery, I usually wear the same pair of shoes until they wear out, I don’t have fancy clothes, etc…  Now if I had rated appearance from 1-4 or so, and still scored myself a 0 in terms of my satisfaction in that area, I imagine that would create quite a bit of anxiety.  But then there are outside influences, right?  Yes!  And that’s where any appearance anxiety is coming from.  I am much more likely to get my hair cut when I am seeing family (especially my side of the family).  I’m much more likely to buy a new outfit or something if a family function is coming up. 

I don’t think my home’s appearance was on the list, but it’s something that probably ought to be.  I hear so many people with RA having trouble keeping up with their homes and families.  I really don’t care what my house looks like when it’s just my husband, son, and me.  It’s very cluttered most of the time.  Well, I should clarify that.  We do reach levels of clutter that do start to drive me crazy, and that’s generally when things get cleaned up.  With outside influences though, that REALLY REALLY drives up my anxiety.  Having my family come to visit and trying to get the house “suitable” for them (FYI, they ALL have house-cleaners, I don’t) is probably my #1 time to have a flare.  I think the “trying to get it all done” combined with the anxiety (I’ve actually had family members examine my closets!) of what they’ll say, can really do me in.  I really love having my family come to visit though.  I lost my grandmothers in 2004 and 2005 and my mother in 2008.  It’s much harder to get the family together without these matriarchs, but it’s important and I like to do it!

So, here’s an interesting thing to try.  Make a list like the one above.  Rank it in order of your priorities (1-8 or however many you have).  Then rank 0-3 on how you’re doing with them.  For kicks and giggles, make another column and rank where you think outside influences (your husband, family, coworkers, friends, etc…) would put these things.  I think my family would rank home appearance very high (maybe even a 1) and would rank my house a 0 (cluttered mess) on most days.  I think my husband would put “sex life” as a higher priority than I would.

Here’s another thing to think about.  Can we, as folks with RA, rank longevity high if things like careers or home appearance are also high.  Putting ourselves through the kind of stress it takes to “maintain appearances” might be counterproductive to a long life.

So, when we’re sitting here trying to “have it all” and beating ourselves up over every little choice we make, maybe we ought to go back to our priorities.  Everybody’s priorities are different, and I’m sure if I didn’t have RA, health would have a lower rank of importance and a higher rank of how I’m doing with it.  But I do have RA, and my priorities are different as a result.  Other folks may or may not see that, but maybe you can teach them this little game.

I’d love some comments on this post either here or on Facebook (see Facebook link below the picture at the top).  Love and good health to you all!

Rheumatoid Disease – Perfecting Homeostasis

When I googled the definition of homeostasis, I got this: “the tendency toward a relatively stable equilibrium between interdependent elements, especially as maintained by physiological processes.”  I heard this term recently, and thought it to be a great way to think about my RA issues, but there might be a much simpler definition: balance.

I realize more and more every day that I can control so much of my health, especially my rheumatoid.  I know there are many people out there who haven’t taken this journey, but I really believe it can be done.  Will it cure me?  Probably not.  Will it allow me to live many more disability free years?  I think so.  Will it treat my pain and fatigue?  Absolutely!

Here’s part of the deal though. I’m up and down.  The last 6 months or so, I’ve been up and down a lot.  Leg cramps, kidney stones, low thyroid (a medication issue, not really anything I can control as I will need to take the meds forever as I have no functioning thyroid), some RA pains (mild), and lately some reflux (still trying to figure that out!)  Does that scare me or bother me?  A little bit, but not as long as I get back to my balance, my homeostasis.  In my best recent homeostasis, I’m 133 pounds, have a little bit of muscle/strength, no fatigue, no pain, sleep well, feel good.  In my best recent homeostasis, I’m happy, have more energy, and am less prone to a shock to my system.

How do I get to my perfect homeostasis?  I’m not 100% sure, but I’m working on defining it.  I’ve determined that it needs better definition, but I also believe that my perfect homeostasis definitions may change over time.  Right now, I’m thinking about my “best” homeostasis rather than perfect, because I think my “best” can still improve.

Here’s what I know about my best homeostasis:

  • It includes the Paleo Diet, which has impacted my RA, triglycerides, energy, pain, blood pressure, fatigue, weight, liver function, thyroid eye disease, cholesterol, and more all in a positive way.
  • It includes keeping my Thyroid Stimulating Hormone around 1.0 (or crazy things happen to my body).
  • It includes exercise, particularly light to moderate strength work.
  • Good sleep.
  • Near perfection in all of the above

Here’s what I think I know about improving my homeostasis, but I’m still working on:

  • Improving vitamin D level (dang it if I can’t get above 26).
  • Improving magnesium levels (which I hope will improve glutamate issues I have)
  • Juicing.  I think this helps, and I’ve gotten away from it.  I have to revisit.
  • Better gut health, which I think has improved, but still needs work I “think” around fat digestion and gut flora.

Here’s what I’m currently struggling with:

  • Leg cramps, which might be low magnesium.
  • Reflux which might be caused by my magnesium supplement.
  • Getting back to 133 pounds.  I got up to 145 when my thyroid levels tanked, dropped to 140, and have stayed there for quite a while.
  • Getting my stress under control.
  • Getting back to exercising, which I think got messed up when my fatigue kicked in due to low thyroid.
  • Can’t wait until I’m out of work for summer, so I can focus better on some of these things.  It’s so much easier to decrease stress when I’m not working!

Random things that I do to mess up my homeostasis:

  • Sit out in the cold and rain to watch my son’s baseball game
  • Change shoes
  • Get stressed out/take on more than my body’s capability
  • Sleep too much (yeah, I have more issues with too much sleep than not enough)
  • Eat out when my food might be cross contaminated with non-Paleo things.
  • Cheat too much with dark chocolate??? (RA? reflux?)
  • Drink green tea or have balsamic vinegar (hives)
  • Go to bed too early
  • Drink alcohol (seem to tolerate rum better than anything else)
  • Getting cold in almost any fashion
  • Not being perfect
  • Probably thousands more things

About being perfect.  I can’t be.  I don’t think anybody can be.  Sometimes I want to have an alcoholic drink or eat an entire bar of chocolate after a stressful day.  And you know what?  I can, and I do.  I just know it will break homeostasis, and I’ll have to be better the next few days to get it back.  What happens if I don’t get back to my rules?  Well then, my homeostasis will change for the worse, and I won’t get back to the happy place I was.  That won’t work for me.  I make choices daily that determine how my body will react.  If I continue to make the wrong choices, my body isn’t going to be the happy place I want it to be.  So, I try not to make too many wrong choices.  I choose the harder diet and the stricter rules because it pays off.

What’s your best recent homeostasis?  What can/do you do to change it for the better or worse?

FYI, it’s 3:00 AM, and I’m up writing this because I stayed out in the cold and rain at my son’s baseball game.  I got too cold, came home and got in bed too early, and I’ve been awake since 1:00 AM.  I made the decision to get out of bed, as this break in sleep will likely help me have a better RA day tomorrow than sleeping too long.  Decisions.

 

 

Rheumatoid Arthritis – Overdoing It

I try to balance my posts with my ups and downs.  Sometimes I think I paint the picture too bright or too gloomy.  Still, I think it’s important to say that even though Paleo is helping me enormously, there are limits.  I encountered these limits and beyond over the last two weeks.

My husband had to travel for work.  This happens very rarely, but still left me as single mom for a week.  Bless all of the single parents out there.  It’s a ton of work!   Homework, Cub Scouts, baseball practice, dinner, dentist, puppy training.  And if that wasn’t enough, I decided to schedule a major endeavor among it all. 

Ok, it took me a while to decide what I wanted, but I finally figured out my Christmas/birthday/Mother’s Day present.  Well, I wanted new floors for our kitchen and living room, as ours were nasty and no amount of cleaning the carpet or gluing the linoleum was going to save them (believe me, I tried).  Of course it took me about 4 months to figure out what I wanted (that we could afford), so now, in April, I finally got my Christmas present!  We started the demolition the morning after my husband returned.

I am not good at these large home-improvement projects.  My husband (to save money) had said that he would put the floors in (laminate… the fake wood stuff).  Then he decided that for his birthday, he wanted somebody else to do it (PHEW!)  Still, to save money, we decided to remove the old carpet and linoleum ourselves, plus the baseboard trim needed to be removed, as the new floors are thicker than the old.  Of course while the trim was off, I had to paint it.  Then, we had to move all of the furniture. You see where all of this is going, right?  Thank God for my in-laws!  They’re good at removing carpet and carpet pad.  We got some of the linoleum up, but discovered that the linoleum was put in (with 1/4 inch wood under it) and then all of our kitchen cabinets were mounted on top of the flooring.  This meant either the cupboards had to come out or the linoleum had to be cut out.  We opted for the cutting method.  What a MESS!  And an expense, as we paid the guy who put our floors in to do that unexpected part.  Did I mention that there is 1/4 inch of dust on EVERYTHING we own?  Even the dishes in the cupboards are thick with dust. The floors took 5 days, but the dust will take a year.

To top it all off, I had a lot of helping out to do at church this last week, and by Easter, I was so exhausted and sore I was barely walking.  My left thumb is very swollen, and my feet and back are in pain.  Easter day was super busy, and sadly included me taking an hour+ nap at my in-laws, glad to just have a non-dusty space to stop and sit for a bit.  Monday it was right back to work, with no break.  Monday night (last night), I was in bed by 8:00 and today am feeling much better, but still sore.

Yes, I way overextended myself.  Yes, I need to take it down several notches and take extra good care of myself this week, and next, and probably a few after that.  It’s amazing how stress can cause so much damage to your body.  At least I see it more clearly on this diet than I did before.  Before, I would blame it on RA.  Now, I can put the blame where it belongs, on myself.  And my poor body is just trying to do the best it can with what it’s got.  I see that now.  And that’s a good thing.

Rheumatoid Arthritis – Fighting It or Learning from It?

There’s a lot of “noise” when it comes to rheumatoid disease.  I call it “noise” because there’s all of this stuff going on in your body and in your life that you learn to adapt to. Like the furnace running or the hum of the computer, we learn to adapt to many things and tune them out.  For the most part, this is a good thing.  Imagine all of the sights, sounds, smells, and textures that could drive you crazy if you didn’t adapt to them!  What happens though, if you start tuning out stuff that is your body’s way of warning you?  Hmmm.

In my attempts to “combat” my rheumatoid, I’ve thought of Enbrel, methotrexate, ibuprofen, prednisone, etc… as going in and doing a combative effort to grab hold of my body, fight my immune system, shrink my inflammation, and gosh darn it, make this RA go away.  I no longer think of this as the best way to control my RA.  Instead of fighting, I’m now trying to listen… harder.

In all fairness, I think I’ve always tried to listen to my body.  I think my ability to listen was compromised though.  Instead of trying to tune out the furnace and the computer, I was trying to tune out the radio, tv, fan running, son crying, dog barking, big itchy tag in the back of my shirt, and the stinky fish in the trash can.  When I was first diagnosed, I kept a diary of what I ate, the weather, my sleep, etc…  It never showed me anything meaningful.  If I did the same thing now though, I think it might show me what’s been there all along.  There was just too much background noise to see it.

What I now know:

  • I can’t eat grains.
  • I can’t eat white potatoes.
  • I can’t eat tomatoes.
  • I can’t eat most dairy.
  • I need to sleep well all the time.
  • I need to keep my stress level down all the time.
  • I need to exercise all the time.
  • I need to feel generally happy and have a positive outlook.
  • I need to keep my vitamin D level up and my thyroid level in check.
  • I need to wear really flat shoes.

How did I learn these things?  Well, I followed some advice of some folks smarter than me, who were finding success in more natural ways to treat their autoimmune disease.  This brought me to Paleo, and the understanding that the fuel I’m putting in my body does make a difference.  And so does everything else.

Wow, put those first 4 rules of mine in the context of the standard American diet, and there’s no wonder I couldn’t hear it.  I was eating those things pretty much every day.  Stress and sleep?  I used to work at 4:00 AM when diagnosed.  That was probably a big problem.  You can’t see all of those things individually when you’re doing them all the time.  At some point, you have to break it down, get away from it all, and see what happens.  How did I do it?

I started a few years before going Paleo.  I was seeing a psychologist to help me in coping with some stress in my life, including trying to get my RA better.  At a certain point, I wrote a list of things that I thought might help my RA (getting my sleep better, physical therapy, cutting out processed foods, etc…) and I started into them.  First it was physical therapy, then an exercise program, then my diet, and then do you know what happened?  All of that background noise decreased, and I was able to see my rheumatoid much more clearly.  My body IS trying to tell me something.  I AM doing some things wrong, and I NEED to stop.  My immune system IS trying to help me, but I’m NOT helping it in return.  Do I know it all yet?  No.  There is still some background noise.  Am I making progress?  Yes, enormous progress, and I will keep trying to listen until I figure it out.

Here’s the other thing.  This isn’t anything special.  This isn’t anything you can’t do.  It may be a change in the conveniences you’re used to, but it really isn’t very hard.  Make a list of things you think your body might be trying to tell you, and change your life so you can listen if that’s really what it’s saying.  I think if you get your food list really simple for a while (like EAT REAL FOOD, something that grows and you eat whole or something that has a face).  I think the Paleo or Primal diets are an excellent way to cut down the background noise to help you listen.  Can YOU do this?  Yes YOU can.

Things that helped me:

 

Paleo – GMOs and Glyphosates

For over 17 years, I’ve had constant thoughts about how my body got to this weird, sick place.  It sort of drives me a bit crazy.  Well, then there’s the fact that I am a bit crazy.  I was reading some Facebook posts recently on people’s thoughts about GMOs.  What are GMOs?  They’re genetically modified organisms, and in this case, I am thinking about our food.  Supposedly 80% of processed food contains GMOs, as in somebody changed our food using some science, well beyond my understanding.  They changed what used to be nature’s food into science food, and without safety testing, threw it into our food chain.  What?  When did that happen?  Yeah, I didn’t realize it either…. 1994, according to Wikipedia.

Well, I, in my constant thoughts about my RA (was it stress, food, poor sleep, etc…), have thoughts about GMOs.  See, they were introduced in 1994, and I got very sick in early 1996.  Makes you wonder, huh?

So, I was reading another article: Glyphosate: What You Don’t Know Might Be Killing You and listening to Robb Wolf’s podcast, episode 95.  This got me thinking even more.  In the podcast, Robb Wolf has a guest, Dr. William Davis, author of the Wheat Belly book.  Dr. Davis had some awesome insight into how we got to genetically modifying our food.  According to him, we got nervous in the 1970s or so about having a stable food supply (aka, too many people and not enough food).  So, we started researching ways to increase yields from crops, and apparently we were quite successful.  My husband believes some folks even won the Nobel Peace Prize for their work in this area.  I wonder if this is what those researchers had in mind when doing their work.  Anyway, wheat plants got shorter in height, which made it so they could be planted closer together and yield more per acre, like 10 times more.  Fast forward even more, and groups like Monsanto have developed plants that are genetically modified to be resistant to the weed killer, Round Up.  Round Up contains glyphosate, which according research that’s coming out, is very toxic.  So, plants that are genetically modified are doused with Round Up over and over, and then YOU EAT IT!  I get to see this all summer long, as I live in a farm turning to suburban area where a plane zips by our house dumping chemicals all summer long.  And although I don’t know for certain what the chemicals are, I do know that we feel sick after the spraying (which has been as close as 10 feet of our property, but even 2 – 3 miles away has an effect).  Supposedly a BILLION pounds of Round Up are sprayed every year, making their way into our food and water supply.  Concerned?  You should be!

Not only that, but many plants are becoming resistant to glyphosate and are now becoming noxious weeds, as I’ve read about particularly with canola.  Not worried about Round Up?  Well, how about this?  Monsanto has developed corn that produces its own toxins.  These toxins break open the stomachs of certain insects.  And yes, this corn is in our food.  Think of all of the foods with corn syrup…. your sodas, your kid’s Halloween candy.  You’re eating food that’s not been tested for safety in humans.  Oh, and a study came out linking it to autoimmune disease.

Well, how did this happen?  Certainly our government would protect us from such things, right?  Well, it does let this happen when you have men like Michael Taylor, former attorney for Monsanto, working as the Deputy Commissioner for Policy for the Food and Drug Administration (FDA) and Administrator of the Food Safety & Inspection Service for the United States Department of Agriculture (USDA).  Yeah, you really should read the Wikipedia article on him.  It’s quite enlightening.

You should also read the Wikipedia article on Monsanto itself.  Let me highlight some of the things that stress me out about it. 

Monsanto has the technology to stop plants from making their own seeds (aka, the seeds you get out of your garden pumpkins wouldn’t grow if you planted them), making everybody dependent on Monsanto seed.

Monsanto developed and sold recombinant bovine somatotropin (also known as rBST and rBGH), a synthetic hormone that increases milk production.  This milk (available at your local grocery store) was found to have increased levels of insulin-like growth factor 1.

Monsanto was the maker of Agent Orange, DDT and PCBs.

Monsanto spent $6.3 million lobbying Congress and the USDA in 2011 and spent $8.1 million fighting California’s Proposition 37 to label GMO foods.

There was a list of folks with US government and Monsanto ties.

The company has patented seeds, aka, patented life. 

Mostanto developed the drug Celebrex, now owned by Phizer.

In 2005, Monsanto was the largest conventional seed company.

In the grand scheme of how I think about my RA, I try to control my life in terms of diet, exercise, sleep, stress, etc… The scary thing is there is so much crap in our food that’s not labeled, that I may never figure out how to totally get well.  Scary, huh?  If you really want to learn about some of this stuff, I highly recommend watching the movie Food Inc., which you can stream from Netflix if you’ve got it.

Unleashing my stress on the world,

Lori

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!

Rheumatoid Disease – Again with the Elbow!

Today, I saw my rheumy, and he showed me the radiology report from the MRI I had done on my elbow.  Let’s just say that it said nothing good about it.  Edema in the bone, lots of fluid, partially torn ligament, etc….  Their impression was that this had RA written all over it, but I still haven’t been buying that fully.

When I injured my elbow (7 years ago, carrying my son in his infant car seat), my elbow went POP, hurt like and SOB for about 5 seconds, then didn’t hurt, but didn’t ever straighten again.  Granted my RA was really bad at that time, but my elbows actually didn’t bother me in the least bit.  The pop didn’t bother me until about 2 years ago, when I started getting more aggressive with an exercise program.  It hasn’t really hurt during the day time, but when I exercise, it hurts at night (when I lie down, specifically) and locks up so severely, that sometimes I can’t rotate it (at 90 degrees stomach to outside).  It wakes me up frequently, and has been a near nightly problem since they tried to straighten it in the MRI machine a few weeks ago.

Apparently that pop was a tear in the ligament, but now there’s all of this fluid and swollen bone stuff.  Who knew?  The joint is not warm or red like a usual RA-impacted joint would be for me.  Anyway, the radiologist recommended an ultrasound guided draining and injection, as the joint appeared so severely impacted that he wasn’t even sure that they could get a needle in there.

I love my rheumy.  Did I mention that the orthopedic surgeon still hasn’t called me with any MRI results?  Anyway, he did the ultrasound thing, got it all lined up, and got the needle in.  Guess what!  No fluid came out.  He verified via the ultrasound that he was in the right spot, and he was.  If I understand this correctly, this could mean one of two things.  1- this could be severe ongoing RA (I don’t think so) or 2- this could be an old injury that didn’t heal properly, and the fluid has thickened such that it won’t come up the needle (that’s what I think).  He successfully injected it with a steroid, and we’re going to see if it does anything.

Yesterday after the procedure, it bothered me quite a bit (even in my muscles around my elbow).  Last night was the first night in a long time that my elbow didn’t wake me.  Today, it’s feeling a smidge better, but hurts with some reaching backwards things like getting my seatbelt on and washing my hair.  The risk here is that the ligament tear could cause a change in my elbow that could cause wear and tear damage on the joint over time or that the joint could become unstable as some of my other joints have (swollen for so long, then not swollen, and all the ligaments are stretched out).  Time will tell.  I thought the procedure was worth the risk, as it seemed to be worsening after several years of not having any problems (other than it didn’t straighten all the way).  Hopefully that hardened fluid will work its way out???  I’m not even sure what the steroid will do, but I guess that’s the goal.

I have to get the “all clear” from the orthopedic surgeon on the torn ligament.  Is it safe to exercise?  Does it/can it be repaired?  Of course, he hasn’t returned my rheumy’s calls either.  Sheeesh.

I’m sure there will be more to come on this story, but the moral is… don’t blow off a “pop” in your elbow, even if it doesn’t hurt anymore!