Paleo – New Books, New Thoughts

I got an Amazon gift card a couple of months ago and decided to order some new books.  I got 3 of them, all in Paleo theme.  I wonder what my MomsWithRA.org folks think of all of this Paleo stuff that I post.  I certainly didn’t start my website in 2006 with this in mind.  At the time, I was flaring horribly after the birth of my son and was looking for answers and other moms who had similar things going on.  And I did find those moms, and we had fantastic conversations, and we helped one another, and I think we even came up with a bunch of research ideas, should some doctor/researcher ever go through our forums.  And I felt like I wasn’t alone.

Time has moved on.  Our forums have died off, and Facebook seems to be the new mode of communication.  Still, I don’t think it’s nearly as great as forums (where you can be anonymous, and more discussions are had for sure!)  I have moved on.  Gone is my severe flare that lasted several years.  I’m no longer that “new mom” but rather the mom of a soon-to-be 8 year old!  Agh!

So, I’ve been reading my Paleo books, one of which contains 50 personal stories of Paleo successes.  The stories are rather amazing.  Huge weight loss, MS in remission (OMG, Multiple Sclerosis in REMISSION), tics that stopped, bipolar disorder and ADHD successes, one story that appeared to be improved psoriatic arthritis, and the stories went on and on.  “Gone” seemed to be a big theme.  Acne gone, Type II Diabetes gone, 99 pounds gone, brain fog gone, sleep apnea gone, pains gone, ongoing injuries gone, high blood pressure gone.  New things also seemed consistent: improved sleep, improved thinking and clarity, improved strength (even for those who didn’t exercise), improved energy, improved bowel issues, improved muscle definition, and the list goes on.

In the stories (and another book I was reading), some Paleo followers seemed to get upset by other people’s comments on their diet (You’re gonna die eating all the fat and protein, I could never go without bread, You’re crazy, When are you going to start eating normal food again?  What do you mean you have daily sometimes; that’s not Paleo.)  I’ve heard some of that too, but very little.  Really, when people see me, it’s quite evident how much better I’m doing, how much better I look, and how much easier I’m getting around.  I’ve made some Paleo converts.

A theme seemed to emerge that I really liked among some of the stories.  Paleo is what you make of it.  Some people follow all of the rules all of the time.  Some people follow some of the rules some of the time, and some of the rules all of the time.  Some people follow the rules 80% of the time, etc….  Some people don’t NEED to follow all of the rules, but I was amazed to read how many people did NEED to follow all of the rules all of the time to feel well.  Here is the theme that I liked.  Paleo is almost a way of listening to your body.  For those with chronic health issues which modern medicine is not treating effectively, they get reduced to desperation, doing anything they can to feel better.  Many of the stories people told did not start out as following the Paleo Diet, but rather listening to their bodies, having dietary success, then discovering that they were Paleo or near Paleo.  Then, suddenly there’s a community and science of support behind doing what they’ve done that brings a sense of “I’m not crazy after all.”

Here are also some of the trends I saw in the stories.  Many sick people had been vegan or vegetarian at one time or another before going Paleo and many thought that vegetarianism caused them harm.  Many people had some success going gluten-free before going Paleo.  Many people had some success with Atkins before going Paleo.  A few people cheated after starting Paleo, then discovered how well Paleo had been working for them as a result of the cheat and got back on track.  Reports on doctors seemed to be split with some doctors supporting the elimination of grain, but most not supporting it.  There were many people frustrated with medical advances unable to adequately help their illnesses.  Although weight loss was highlighted pretty extremely, most people seemed to be into Paleo for how they felt, with how they looked being an added bonus.  There are many seriously ill people out there who are attributing their better health to being Paleo.

Although I didn’t see any rheumatoid arthritis stories in the book, I certainly have my own to tell (RA under excellent control with normal inflammation markers).  And I’m still learning.  18 months in, I’m still losing weight (minus 51 pounds and counting).  I now look at the world so differently and wish nearly everybody would give this a try.  At the very least, I wish people would listen more to their bodies and maybe keep some Paleo principles in mind like no grains, dairy, legumes, alcohol, or white potatoes, limit sugar, experiment with nightshades (tomatoes, peppers), nuts,and eggs.  The interesting thing is, I tried many of these before, but didn’t see the results until I tried it all together.  Could many health ailments be aided by simply listening to your body?  What did folks do 100 years ago without the medications we have now?

So, why am I tell you all of this?  Well, I get many messages from moms who are flaring horribly.  I’m not a doctor.  I can’t give medical advice, but I can tell about what I’ve done for me.  For several years, I tried meds (limited help) and physical therapy (more help), but what seems to be working the best is Paleo. Paleo is what I’ve done.  And I’m seeing good results that I believe are related to my Paleo dietary changes.

So, as I spout off my blogs to a group called “Moms With RA” (knowing I am a mom with RA who is now a Paleo mom with RA) can you tolerate listening to all of this Paleo stuff?  Cuz I can’t seem to stop talking about it, and the stories in this book seem to only reinforce that there’s a lot of other people out there who can’t stop talking about it either.  Think about it.  Post a comment on the blog if you don’t want to post on Facebook.

Love you gals!

- Lori

Adapting – Customized Hard Splints

For a history on my hand issues, see this post: http://rapaleo.momswithra.org/wp/?p=147

Custom hard splints. I can cinch down everything, so nothing moves.

So, these suckers are amazing.  I have one for each hand.  They were custom made by an occupational therapist about 5 years ago, and the white plastic was heated and molded to fit my hands.  There’s cushioning that’s customized to fit between my fingers, keeping them in appropriate alignment.  My wrists can by cinched down tight to the hard plastic, so they don’t bend at all.  My only complaint is I think my thumb is opened too far, and after a while it gets uncomfortable.  That can be adjusted (remelted and moved) by an OT if I go back.  So far, I’ve only had to use these a few times, but I was so thankful that I had them when I did.

Custom hard splints. Note the cushioning between my fingers to keep them aligned.

Last view…

Custom hard splints. An adjustment I'd like in the future is to move my thumb closer the the palm of my hand.

Anybody else have these or need them sometimes?

- Lori

Adapting – Soft Hand Splints

Ok, for my hand history, see this post: http://rapaleo.momswithra.org/wp/?p=147

That post will help these splints make sense.  Here they are in all of their glory.  I know they were still making them 3-4 years ago.  This pair is pretty worn out, but that doesn’t stop me from wearing them when I need them!  If I can find out the company who makes them, I will post it in the comments.  I think they made 3 sizes.

Soft splints for wrists, hands, and keeping my middle finger aligned.

I had a certified hand therapist (slightly different than an occupational therapist) recommend these splints when I was coming off my initial diagnosis and flare and onto the calm that was Enbrel.  Because I was struggling with keeping the tendon of my middle finger from sliding off, these splints had strips that were designed to go around the ring finger (apparently more problematic for most RA patients), but we used them for my middle finger (didn’t make a middle finger version).  This made a big difference with my grab and release activities, and my tendon would stay in the right place.  These splints also significantly lock my wrists into a straight position, a comfort during a flare.  With these splints (which I still use during repetitive heavy lifting activities), and great therapy (which also included exercises, paraffin wax baths, ultrasound… yes ULTRASOUND on my #1 joint of my middle fingers, and my splints), my hands are quite functional.

Paleo – Weirdness to Weight Loss

So, I’m not sure how Paleo works for other folks, but for me, it’s bizarre.  I will go a long time without losing any weight, then seemingly out of nowhere, I’ll drop 5-10 pounds in less than a week.

Yesterday, I had the most bizarre day.  I was starving all day long, which is very unlike me.  I also ate all day long…  a lot, yeah, a lot.  And not so good for me on the sugar front either.  Here’s my best recollection of what I ate:

Breakfast

  1. Bacon, 2 slices
  2. Eggs, 2 with lots of pizza seasoning on them
  3. Fresh squeezed juice (kale, collard green, apple, carrot, blueberry)
  4. Date bar

Snack:

  1. Half of a raspberry chocolate bar (a REALLY big chocolate bar)
  2. Another date bar (did I mention they have no sugar, but are 200 calories?)

Lunch

  1. Leftover roast
  2. Cherries
  3. Half of an apple

Snack:

  1. Half of a raspberry chocolate bar
  2. A bunch of pistachio nuts
  3. A bunch of cinnamon-sugar almonds

Dinner:

  1. Roasted cauliflower: http://rapaleo.momswithra.org/wp/?p=130
  2. Bacon sweet potatoes: http://paleomg.com/cinnamon-bacon-backyard-sweet-potatoes/
  3. Leftover roast, a big honkin’ chunk, which I ate like a cavewoman!

Snack:

  1. Yet another date bar
  2. More chocolate

Yesterday morning, I weighed myself at 137, and this morning (after eating all that food), I was 135.  And I didn’t exercise.  Not a bit.  And I drank tons of water, just to try to not feel so hungry.  What does that mean?

Adapting – Push Up Handles

I’m finally getting to my first adaptation for my hands.  Sometimes you can find adaptations that don’t involve medical equipment (cheaper and easier to find).  This is one of those items.  One of the first things I lost (then gained back, then lost again) is the flexibility of my wrists.

My lack of wrist flexibility, worse on this right hand than my left.

Shortly after diagnosis, my job involved sitting on the floor working with preschoolers (and obviously getting up from the floor).  At the time (and I imagine a more natural way to get up) I used my hands to push up from the floor.  When my wrists didn’t bend, sometimes I would have to keep my wrists straight, make a fist, and push up on my knuckles (probably not the best thing to do and sometimes painful).  When my husband and I got married, this was still my mode of getting up.  He came up with the idea of push up handles.  It was brilliant and got me several years of easier up-downs from the floor (now more impacted by my knees than my wrists).  For around $20, push up handles are available at most sporting good stores like Dick’s Sporting Goods (http://www.dickssportinggoods.com/product/index.jsp?productId=22950666).  By the way, don’t google “Dick’s.”  It’s so NOT the sporting goods store <sigh>.

Here’s a picture of mine.  Note that I don’t need to flex my wrists.

Push Up Handles, available at most sporting goods stores, make it so you don't have to bend your wrists to get up from the floor.

There you have it, adaptation #1.  Anybody else try these?

- Lori

MomsWithRA.org

www.facebook.com/MomsWithRA

Adapting – Camping

Well, I had planned to make my first adapting post about my hands, but given the timing, I decided to talk about camping (aka, we just got back from camping in Leadville, Colorado, elevation slightly over 10,000 feet.)  This was a great trip!  Cavan got to spend time with his cousin, aunt, uncle, and grandparents, and our little puppy, Luna, got her first camping experience.

Not all of my camping experiences have been great.  My first one with my husband’s family was when Cavan was about 7 months old.  I was flaring horribly, barely walking, and not prepared for the adventure.  We had to borrow a tent, which was low to the ground, and nearly impossible for me to get in and out of.  I was challenged to lift my feet high enough to step over the door threshold, and immediately had to crouch upon entering, something I couldn’t do. I don’t remember how or if I changed my clothes the whole weekend, as I couldn’t stand up to change.  We slept on some small part inflatable/part foam mattresses, and I needed a lot of help getting up (actually, I’m surprised I’m not still stranded up there on that mattress 7 years later).  We also cooked all of our meals while up there from scratch.  That completely did me in, and I really never wanted to go camping again after that.

Camping was a big part of my husband’s growing up, and it continues to be an important time with his family.  It was important that I be able to go, but of course I was flaring bad enough for long enough that it just wasn’t a priority for me to figure out how.

My mother-in-law, about the sweetest person you’d ever meet, nudged us along.  For Christmas, she got us a giant tent.  I could completely stand up and dress myself in the tent.  It was big enough we could put a chair in there in addition to all of our other stuff, if I needed it.  There were times that lifting my feet up over the threshold was still challenging and led to tripping and pain, but with a hand held or something stable to hold onto, that was much easier.

Our tall roomy tent, able to accommodate a chair along with our mattresses, if needed.

For the next year, my mother-in-law got us an inflatable mattress.  This is the be all, end all, queen of inflatable mattresses.  It inflates tall enough that I can stand up from it.  It does take a little effort still, but I can do it on my own.

Thick mattresses. I can get up on my own.

This year, I spent 2 days preparing almost all of our food before we left.  The meat (for the group) was smoked at home ahead of time, wrapped in foil, and was easily tossed on the campfire for heating up.  Our breakfasts and lunches were prepared and put in the cooler.  They simply needed to be taken out and eaten (Paleo style breakfast skillets including sweet potatoes, onions, sausage, bacon, and seasoning and  Paleo style honey mustard chicken with various fruits, nuts, and snacky camping stuff.  I even made Paleo graham crackers to be able to partake in the smores!)

Even if you feel awful, it’s hard to not give your son the opportunity to do this in the mountains with his cousin….

Cavan scootering at 10,000 feet

Or this…

Thankful that Grandma and Grandpa took Cavan out on a kayak!

Or see this…

Turquoise Lake, Leadville, CO

Plus, everybody needs to wake up feeling cold and looking like this….

Snuggles near the fire... Luna, shivering in the cold morning

Ok, I really will get to hands soon!  Happy summer!

- Lori

Paleo – Camping

So, we’re going camping with my in-laws.  Not to be missing out, I’m trying to make a lot of goodies, so we can eat the good stuff.  Of course, as with most things Paleo, this involves a lot of pre-thought.   So far, I’ve made Paleo gingerbread (Paleo Indulgences cookbook), Paleo chocolate zucchini bread (PaleOMG.com), and now Paleo graham crackers (Paleo Indulgences cookbook).  I’m also smoking ribs and roasts in our new smoker.  I think I might also make pumpkin granola (PaleOMG.com) and regular zucchini bread (for the non-Paleo folks).  Am I insane?  I’ve been cooking for 2 days!

Paleo Graham Crackers

Adapting – Series Intro

I had this idea about doing a series on all of the things I’ve purchased to make my life easier in the last 17 years with RA.  Then I thought, wouldn’t it be great if some other folks would chime in about what they’ve used to make life easier?  Therefore, I’m throwing this out there to the most awesome group of moms… If you’d like to make a guest blog or blogs on how you adapt or what you use to adapt to life with RA, please contact me.  Visit our facebook page (www.facebook.com/MomsWithRA) and throw out a comment or you can find my contact information here: http://momswithra.org/index.php?pr=Contact_Us.  I’m thinking it would be good to highlight one adaptation or item per article, to keep them short and sweet.  If you’d like to make more than one post, that would be fantastic!

So, in honor of starting this off, I’m going to introduce you to my hands.  I chose my hands because, let’s face it, it’s a huge struggle when your hands don’t work.  I think it’s harder than when my feet don’t work.  You can’t bathe, cut your food, open stuff, or sometimes even read a book without your hands.  So, before getting into any adaptations yet, I’m simply going to tell you what I know about my hands.

My hands!

I decided to label my joints: 1, 2, 3 (see picture).  That way we can avoid any anatomy discussions with big words like “metacarpal.”

When my RA started 17 years ago, my hands and feet were the first things to get bad.  In particular “Joints 1″ below both of my middle fingers were a mess.  They got so swollen that they were almost black (like a dark purple bruise).  The tendon was no longer able to run its appropriate route across the joint and would slide off to one side.  When this happened, my fingers would bend significantly, and I couldn’t even come close to straightening them.  This could last for days.  This happened frequently with grasp and release activities like grocery shopping.  It was extremely painful and frustrating.

My wrists were also a challenge, and I lost some joint space in places in my wrists, causing pain with bending my wrists.  I lost some flex and bend in both wrists rather immediately.  This made it challenging to push up when getting up from the floor, a challenge because I was working in a preschool.  I also struggled to turn the ignition key in my car or get the gas cap off.  There were times I had to ask for help at the gas station!

The base on my thumb (Joint 1)  was also terribly painful on both hands.  Although I can’t say it lost function, the pain was rather extreme, and slowed me down or stopped me from typing and grasping things.

I never had significant issues with any of my #3 Joints.  My #2 Joints were pretty mild in my early onset RA.

After 3 1/2 years or so, I started Enbrel in 1999.  There was notable improvement in my hands within 45 minutes of my first shot.  I would have thought it was in my head, but within 3 hours, I was able to alternate feet on the stairs, something I hadn’t been able to do in a long time. I started occupational therapy and was able to stabilize my #1 Joints on both my middle fingers.  The OT (occupational therapist) I worked with stated that my disease course was unusual in my hands.  Most people’s fingers start deforming by all turning out toward the pinky.  My pinkies and ring fingers were turning that direction, but my middle and index fingers were deviating toward my thumb.  My wrist pain disappeared, as did issues with my thumbs with the start of Enbrel.  I was very stable on Enbrel alone until 2005.

In 2005, I started a years-long flare after the birth of my son.  I had mild issues return to my #3 Joints and mild-moderate in my #2 Joints, but my most significant was my #2 Joint in my right index finger.  That joint became severe enough that the bursa (https://en.wikipedia.org/wiki/Synovial_bursa) sac popped out of the joint and was sitting on the outside, just under the skin.  It was a rather large lump on my finger.  I was fortunate, however, as I was told my finger would have been significantly deformed had it not popped out.  As my flare started to resolve around 2011, the bursa worked its way back in, leaving some loose skin, as all my #2 Joints now seem to have.  I still had no issues with my #3 Joints.

Despite no active RA currently in my #1 Joints below my middle fingers, they remain slightly swollen and thick-feeling under the skin.  This appears to be due to permanent tissue damage from the extreme swelling I had 17 years ago.  I have no pain there.  The tendon is stable.  I saw a hand surgeon around 2009 (at the insistence of my rheumy, concerned about my bursa).  He thought my hands looked in excellent condition for how long I had RA.  I do have some permanent joint erosions in Joints 1 on both middle fingers.  They look like tiny little cracks on xray.  They don’t appear to have grown since my initial xrays back in 1999, despite my 5-6 year flare.  Hooray Enbrel!  My wrists occasionally give me trouble, but it appears as much related to typing as RA.  I rarely have pain in them, but when I do, it’s severe and completely locks my wrists.

Yes, those are my real fingernails.  They grow wickedly fast, despite the fact that I never shape or do anything to them. I get a lot of comments about how long they are.

Ok, I think that’s everything there is to know about my hands.  My next posts will be talking about how I coped with my crazy hands.  I’ll show you my tools and tricks, and I know I’ve already had some ladies from facebook say they’d blog too!  Let me get a few going, then I’ll turn it over to you!  Thank you for your input!  I know it’s going to help lots of folks!

- Lori (CavansMom, MomsWithRA.org)

Rheumatoid Arthritis – Hitting Bottom

July 4, 2007 How low can you go?

Until I looked at this photo in my computer, I didn’t remember the date.  My camera kindly marks that for me.  I did, however, remember exactly how I felt when this photo was taken.  This was the 4th of July, 2007, and I was feeling miserable.  Sometimes I think we need to try to be an inspiration to one another, and sometimes we need empathy.  I strive to be more on the inspirational side, but this is not really one of those posts.  Today, I’m setting out to have a “been there” RA story.  We’ll call it a small pouring out of my RA soul.

This is our back yard.  We got an inflatable pool that summer, and Cavan loved it.  He’s about a year and a half old in this picture.  This was one of those days that I couldn’t sit down and play with him.  My knees didn’t bend, my hands and shoulders hurt, my feet and knees hurt, and my lower back (that’s a whole other post) was killing me to the point that just standing there was torture.  I was about 185 pounds in this picture.  I think I needed help stepping over the edge of the pool.  Still, I stood there while he splashed around, close enough that I could help if he fell, but relatively unable to interact with him or get down on his level.    I didn’t know my husband was snapping pictures of us.

Sometimes RA really sucks.  Days like this were challenging and depressing to say the least.  I had a ton of these days after Cavan was born.  From what I read, most postpartum flares last around 6 months.  Mine lasted closer to 6 years, with 2 additional autoimmune conditions diagnosed in that time.  Still, I wouldn’t change a single day of that torture for the beautiful son I now have.

RA has taken a lot from me.  We wanted more kids, but given my health we waited a long time before trying again. By then I was “older” and unsuccessful.  I worry some day that Cavan will think he made me flare and have some guilt about it.  It’s not anybody’s fault.  It’s just my body and my life, and part of what has fallen on my plate.  I have some functions in my body that are likely never going to come back.  I’ll probably never run again, never squat, my left arm will likely never straighten at the elbow again, yada, yada, yada.

I think it was sometime in 2010 that I started feeling like I was crazy.  I had been feeling so bad for so long that I thought maybe I didn’t want to get well.  Maybe I was making myself feel this bad, etc…  As my husband said, “It’s time to see Gloria.”  Gloria was my psychologist.  I had been seeing her off and on for probably 10 years.  She’s fantastic, and I’m not sure what I would do without her.  She’s really good at drawing things out of me that I don’t necessarily see as plainly as I should.  What I found myself saying was that I wasn’t crazy, I did want to feel better, I needed to push my doctors harder, and I needed to make a list of things I wanted to try to make my RA better.

My list included things like going to physical therapy, figuring out how to exercise, experimenting with my diet, getting my teeth/gums super healthy (something that has been shown to help RA symptoms), try green tea, fish oil, and probiotics.  So, I started on that path.  At the time, I didn’t want to change my medication protocol, as I was still wanting more kids.  Physical therapy was a miracle and helped my back and my spirit immensely.  That led to exercise therapy, which helped me get stronger and lose about 12 pounds.  Green tea was not my favorite, but I was drinking it.  I think it helped my RA, but made my thyroid eye disease worse.  I tried some dietary changes (like going gluten-free for a while, which didn’t help).  For Christmas, 2011, my mother-in-law got me books on the Paleo diet, something she showed me an article about.  I was interested in trying it, but I thought it was too hard for me.  Well, I started it January 9, 2012, and it’s been life changing (see this post: http://rapaleo.momswithra.org/wp/?p=6).  It took me a while to get to a good tooth cleaning, but I had that done a couple of months ago.  I’m not sure it did anything, but my teeth are all beautiful now!

Anyway, I think my nature is always to be thinking about my health and a way to make it better.  I lost that for a while, but I didn’t stop looking for help to dig myself out.  Despite our deepest darkest RA moments, we make choices to wallow in it or keep fighting it.  I choose to keep fighting it with everything I’ve got.  What I try might not be right for others with RA, but at the very least I hope it inspires people to keep fighting.  Hmmm, maybe this post had a smidge of inspiration after all.  What are YOU doing to feel better?

 

Rheumatoid Arthritis – Adapting to Limitations

I live in Colorado, and Rocky Mountain National Park tends to be a place we visit a few times every summer.  We usually go with friends, and stay up in the mountains for 2 nights.  On this weekend’s trip, we decided to take a long, slightly scary drive up a one-way dirt road with no guard rails to an elevation of around 12,000 feet.  Oh my!

The views at the top were nothing short of spectacular, and it’s probably a good thing the road was one-way.  Once you started, there was no turning back.  When we got near the top, your car was no longer of use.  You had to get out and walk to the tippy top.  We did this, and I was quite determined to make the climb and get some photos from the top of the world (around 12,000 feet)

Well, about 1/10th of the way up, I quickly realized I wasn’t going to make it.  It was a steep loose dirt path with some large rocks here and there.  My ankles don’t bend as far as they used to, so walking uphill is quite challenging, and downhill is nearly impossible on a steep grade.  Plus, the soil was loose, so if I started to slide, I’d probably fall.  If I had my walking sticks (a useful tool that has increased my hiking independence and endurance), I may have been able to go further, but probably not to the top.  My husband was under the weather, so didn’t make this particular adventure with us.  I am thankful and blessed that our friends (who have 2 kids around my son’s age) had no issue taking him to the top.  Of course, they also offered to help me get up, but I knew my limits and stayed behind, thankful my son got the opportunity.

Still, I was pissy and disappointed.  A few times, I tried to get up the hill that forced me to stop.  After only a couple of steps, blocking the path of strangers who were also walking up, I would come back down, dang near sulking about it.  I really dislike looking useless in front of strangers.  Ick.   Soon, the group returned, we piled back into our vehicles, and continued on the road, which went up slightly higher yet.

We got to the very top of the mountain, where there was a visitor’s center and some great views.  I was thrilled to see another hill to climb, even higher than the one the group had previously gone up.  And guess what!  There were STAIRS!  So, despite my high-altitude/thin air headache and my heart about to pound out of my chest (gosh, it’s hard to walk uphill at 12,000 feet), I MADE IT TO THE TOP!  I’m so darn proud of myself.  And glad.  And happy.  And I got a couple of great shots.  Happy days!

So, what are your limitations?  How do you adapt?

July 13, 2013, near Alpine Visitor's Center, Rocky Mountain National Park, 12,000 feet.