Adapting – Flip Flops

I am not a shoe gal, or at least I don’t think I am.  Occasionally in my pre-rheumatoid disease years, I’d find a cute pair of boots or some such thing.  Since rheumatoid, I am a flip flop girl!  I don’t know about anybody else, but I struggle to wear different shoes.  If I wear a pair of shoes one day, then change shoes the next, my whole body feels like crap.  I typically buy a new pair of shoes in the fall (my winter flip flops) and another 1-2 pairs in the spring (my summer flip flops).  I wear them until they die.  Actually, I have some that are quite dead, and I continue to wear them as they’re comfy.  My family thinks I am insane.  We take hikes in the mountains.  Everybody is wearing hiking boots with ankle protection, except me, the crazy rheumatoid gal.  I’m wearing (and climbing over rocks in) flip flops!  Changing to different shoes seems to mess up my whole posture, my back, hips, knees, feet.  All of this can get messed up, simply from changing shoes.  Changing shoes before a hike, bad idea.

My winter flip flops.  I actually own 2 identical pairs of the one on the right.

My winter flip flops. I actually own 2 identical pairs of the one on the right.

Why flip flops?  Even if I’m having a horrible RA day, they’re easy to put on.  I don’t have to bend over.  I don’t have to tie them.  I don’t have to tug them to get them off.  They’re the perfect rheumatoid (or maybe flat out lazy) shoe.  When I went to my rheumy appointment a couple of weeks ago, I noted all 7 patients in the waiting room were wearing flip flops.  Are they just that popular, or is it a rheumatoid thing?

The one on the left is the offender.  The one next to it is from the pair I had been wearing most of the summer.

The one on the left is the offender. The one next to it is from the pair I had been wearing most of the summer.

I try to stick to a nearly flat, but very very (we’re talking 1/2-1 inch) slightly elevated heal.  I was blessed with good feet, other than my rheumatoid disease.  A few years ago, I spoke to my physical therapist about whether my flat flip floppy shoes were a good thing for me to be wearing.  To my surprise, she told me flat or slightly elevated shoes, including my crazy flip flops, were perfect for my feet.  :mrgreen:

So, that brings me to this week.  I work in the schools and have summers off.  I went back to work about 3 weeks ago, wearing the standard flip flops I wore most of the summer.  Standing on my feet all day, and getting acclimated back into school, consistent shoes should be a top priority.  Of course, when I’m feeling so darn good, sometimes I forget the rules I’ve made for myself.  On Monday, I hurt my knee while walking at work (see this post: knee brace).  It didn’t seem like RA pain, but I remembered having this type of pain before.  I was worried my RA was going crazy or something.  Today, my feet are both swollen, but my left way more than my right.  My knee is still bugging me.  As I was on the couch for 3+ hours trying to get the swelling down, it finally dawned on me what the problem was.  My shoes!  On Monday, right before I was heading to work, I took our new puppy out to potty, and well, I stepped in dog poop.  Not having time to clean my shoes off, I left them on the porch, grabbed another pair of flip flops, and ran out the door.  I’ve been wearing those other flip flops for 3 days while standing on my feet all day.  Oops!  Mystery solved, but damage done.  This is going to take a few days to recover.  I hate that!

Who would think that wearing a different pair of shoes would make your foot/feet this swollen (the right is slightly swollen as well)

Who would think that wearing a different pair of shoes would make your foot/feet this swollen (the right is slightly swollen as well)

It could be worse.  For 3+ years after my son was born, I wore a pair of black crocs.  My feet were so swollen, my shoe size changed daily, none of my old shoes fit, having “fitted” shoes hurt, and I was a mess.  We live in Colorado, and in the snow, rain, sleet, hail, etc…  I wore a pair of black crocs with the holes in them.  They worked.  They fit when no other shoe would, and although not as easy to get on as flip flops, they weren’t much harder.  When I needed winter boots, I put plastic grocery bags over my socks, then put my feet in my crocs.  It was crazy (and sometimes cold), but it worked.  But those days are hopefully over, and I am back to my happy flip flops!

For my 40th birthday, I requested a pair of boots (the pretty ones, not the winter ones).  I think it was the first pair of non-flip flop or croc shoes I’ve gotten in 8 years.  They’re super flat, still challenging to wear for a long period of time, but I did wear them quite a bit last winter.  We’ll see how it goes this winter.  Maybe someday I’ll branch further out of flip flop land!

Adapting – Knee Braces

Knee Brace

Knee Brace

Yeah, I’m wearing that baby for real today.  When I started having more serious RA issues in my knees around 2006, my husband pulled this out, saying he had worn it years ago.  I gave it a try.  I cinch it as tight as it will go, and it gives quite a bit of support.  If I have real strong pain, the kind of pain that makes you want to buckle and just fall, this gives enough support that your leg doesn’t give out.

In reality, I tend to use it most at night.  Since my swelling has gone down so dramatically with Paleo, my knee joints are loose.  They hyper-extend easily, and this brace keeps my knees more comfortably in place.  Today, I was walking at work, had a horrid sharp pain, and my knee started to give.  I caught it quickly and didn’t fall, but it’s been hurting all day.  It’s not an RA sort of pain, but more of a “loose” pain.  I hope it gets better.  The pain happened again with the brace on, and it was nice to have the support.  I hope the pain works itself out soon, but in the meantime, I’m keeping the brace on.

It has 3 main adjustments, two long strips of velcro wrap around my leg, more than once, adhering to the brace itself at both the top and bottom of the brace.  There is also a strip of velcro to tighten on the back side of my knee.

This was not a doctor or PT recommendation for me.  The brand on the brace is Tru-Fit.  It has washing instructions :-)   I’m not sure where you can get them, but imagine the great world of Google would tell you!

- Lori

 

Recipe – Sweet Potato Bisque

I found this recipe very helpful when I first started Paleo and felt like I was craving sugar/fullness.  It was a recipe for the non-Paleo world, but I adjusted it to make it Paleo.

  • 2 1/4 cups diced red onion
  • 2 tablespoons olive oil
  • 3 teaspoons minced garlic

Saute in a large soup pot for 5 minutes.

  • 6 cups Paleo-friendly vegetable broth
  • 2 cups water
  • 12 cups peeled and diced sweet potatoes
  • 2 teaspoons dried thyme
  • 1 teaspoon salt
  • 2 bay leaves

Add to sauteed ingredients.  Bring to a boil, then reduce and simmer until sweet potatoes are tender.  Remove bay leaves.  With hand held blender or regular blender, puree the soup.

  • 3/4 cup coconut milk
  • 3 tablespoons fresh chopped Italian Parsley (optional, garnish or stirred in)

Stir into soup and serve.

Sweet Potato Bisque with Paleo blueberry muffin

Sweet Potato Bisque with Paleo blueberry muffin

Recipes – Our Morning Juice

I suspect this could be made with a lot less fruit.  Given I’m trying to get some degree of veggies in my picky 7 year old eater, this is where we are:

  • 2 apples, usually Organic Granny Smith
  • 1 red pear
  • 5 large collard green leaves and/or 5 kale leaves
  • 5-6 large carrots
  • sometimes 1 add in (cranberries, a little leftover broccoli, etc…)

Directions:  This depends on the type of juicer you have.  You may have to cut your fruit up.  For mine, I was it all, dump it in the juice, and drink.  Makes about three 7 ounce glasses.

I love collard greens in our juice.  They hardly have any flavor, and seem to juice better than spinach or some other greens I’ve tried.  Plus, they’re packed with good stuff, but can be a problem for folks on blood thinners.  Beware!  Kale and Collard Greens

Recipe – Chocolate Shake

Chocolate shake, naturally sweet, meets my sweet-tooth needs!

Chocolate shake, naturally sweet, meets my sweet-tooth needs!

This is a shake I made up myself.  Most recipes I’ve seen for shakes use almond milk.  Since I don’t but it often, I use coconut milk.  This shake is filling and I suspect rather loaded with calories (something I never fear on this diet, but others may), given the coconut milk.  I never measure, so pardon my approximations.  This recipe comes out a little different every time, and there’s no such thing as a mistake with it.  The only rule is that it has to blend in the blender.  If it’s too thick, add more coconut milk.

  • 1 large collard green leaf
  • If you’re feeling daring, also add 1 large kale leaf, very optional
  • coconut milk, full fat, about 1/2 cup
  • 2 ripe bananas
  • heaping kitchen spoon of unsweetened cocoa powder
  • frozen blueberries or strawberries, about 1 cup?

Directions:  Throw is all in the blender, frozen berries last, and add just enough berries to thicken it up. Serves 2-3, depending on how the measurements work out and the size of your bananas.  If it’s too thick for the blender, add more coconut milk or hold off on the berries.  There’s no mistakes here…. it’ll taste good unless your blender sucks and doesn’t blend the greenery well.

The benefits of collard greens: Collard Greens

Being Natural – Setback?

I went to the dentist today.  My tooth history is a relative good one.  Up until age 28 or so, I saw the dentist routinely.  I got my first cavity at age 27.  It was small, in a wisdom tooth and not a big deal.  I suppose keeping up with my rheumatoid disease got the better of me, and I stopped going to the dentist around 27 or 28 years old.  I also lost dental coverage at age 24, with my first poor-pay “grown up” job, making the expense more of a hassle.  How sucky is that?

Given I was diagnosed with RA at age 23, I don’t think my oral care is to blame.  Still, there’s some good research coming out about rheumatoid and gum disease, so I thought it best to get myself back into a dentist…. now at age 40.  Yes, I’m a procrastinator. I’d been reading the gum research for a few years.

http://www.everydayhealth.com/rheumatoid-arthritis/the-link-between-gum-disease-and-rheumatoid-arthritis.aspx

http://www.ncbi.nlm.nih.gov/pubmed/22576262

http://rawarrior.com/rheumatoid-arthritis-and-periodontal-disease/

So, I went about 3 months ago.  I had 3 small-medium cavities, plus the recommendation of having my wisdom teeth pulled.  I had the recommended “below the gumline” cleaning, but have so far skipped out on the wisdom tooth thing (where one of my cavities are).  I have a feeling this will come to a head soon.  For 13 or so years, I didn’t think this was too bad of a dental visit!

Anyway, they recommended I come back for a cleaning in 3 months, given how l hadn’t been to the dentist in so long.  I did that this morning.  It was simply a routine cleaning, but guess what!  They found 1-2 new cavities!  I can’t believe it!  Now, in my “going more natural” thing this summer, I scrapped the toothpaste I had been using my whole life (you know, the major brand most of us probably use) in favor of a less toxic one.  Perhaps that was a mistake. Perhaps.

So, now what?  I went right out and bought my good old toothpaste.  I’ll have one of the cavities filled next week, with a “watch and wait” on the other one.  I think I’ll increase my vitamin D and calcium for good measure.  Ugh!  I’m shocked how fast that happened… and pissed.  Anyway….

Rheumatoid Disease/Arthritis – Telling Your Kids

This question came to me via a friend on Facebook.  I thought it was big enough to be worthy of a blog post.  This is only my story.  I hope others will chime in.

How did you tell your kids about your ra and at what age? Thanks

I was diagnosed with rheumatoid disease long before my son was born.  My flare after he was born was severe and several years long.  I don’t remember the exact time I first told him about it.  It was always a major impact on all of our lives.  Mom/son activities rarely involved anything requiring me to get on the floor.  We read, a lot!  He’s currently reading several grade levels beyond what is typical, he enjoys reading, and I feel somewhat responsible for that (daddy has a lot to do with it too).  I do feel badly because I probably instilled a little too much fear in him (don’t climb on that or you’ll crack your head, don’t run or you’ll get hit by a car).  He was never a daredevil, and I’m probably to blame for that.  I couldn’t catch him if he fell, run if he dashed into the street.  The “be careful or else ___” were constant.  I’m also trying to raise him to be more independent, which actually helps me as we can do more if the little things don’t tire me out.

Cavan, surrounded by beauty and absorbed in a book, at the top of Trail Ridge Road, Rocky Mountain National Park, Summer 2013.

Questions probably started coming around the age of three.  They were simple questions like, why can’t you open ___, why can’t you carry ___, why can’t you take me on this amusement ride, etc…  At first, the answers were simpler.  Mommy’s leg isn’t working good today.  You’re getting so big, mommy can’t carry you up the stairs anymore.  There were a lot of “ask daddy” answers.

Around 2 1/2, my son was diagnosed with allergies and asthma.  I was diagnosed with allergies and asthma around the same age.  I always felt it important for him to be able to speak to how he’s feeling, understand which medicines help him in which ways, and give him a voice in his care.  Around 3 or 4, discussions started happening around why his body makes him wheeze, and how most other kids don’t have this problem.  It was around then that I was able to start talking about an immune system.  Then I broke out bigger words (cells, attacking joints, bones)  We used some of his children’s books about the body.  I compared his asthma with my RA.  I never gave him any reason to think that he would get rheumatoid disease.  My body is broken, not his.  I am also extremely careful to not make it seem like his birth is at fault for my flare (my RA was under excellent control before his birth).  This is just how it is for me.

He’s now seven years old.  He knows that sometimes he has to be careful with me.  Sometime he’s good about that, other times not so much.  Now that he’s 7, the daredevil is coming out a tiny bit.  I let him climb on the kitchen counters now, but I still hold his hand in the parking lot.  He doesn’t ask many questions about it any more, although sometimes he’ll state what he knows.   “Yeah, you can’t do that because it will make your bones hurt.”  His bigger questions lately have been about why we have this website.  He’s starting to understand it as a good thing, where I can get help from others and give help to others.  Doctors don’t know everything, and he already seems to get that.

I’d love some comments on the blog or Facebook about how you told your kids!  Thank you, T.Z. for this question!

- Lori

For those of you who don’t know, I am now supporting the notion that rheumatoid arthritis (RA) ought to be called rheumatoid disease (RD), to separate it from the notion that it’s anything like osteoarthritis.

 

Rheumatoid Disease/Arthritis – What Type of Patient Are You?

For those of you who don’t know, I am now supporting the notion that rheumatoid arthritis (RA) ought to be called rheumatoid disease (RD), to separate it from the notion that it’s anything like osteoarthritis.  Read on….

This post has been in my mind for a very long time, yet I’m still not sure how to convey these thoughts.  I’ve decided to start spewing from my heart, and see where this goes.  Multiple events have happened today that have made me see the need to get this out there.  Here goes.

Doctor #1

When I was first diagnosed, it was 1996.  I was single, 23, and in graduate school.  The internet not being what it is today, the ability to research my condition was extremely limited.  I was reliant on my doctor for information, and at the time, that worked for me.  I was overwhelmed and wanted direct instruction on what to do.  Luckily, she was a great doctor, had my long-term health and happiness in mind, and gave me great advice (you shouldn’t get pregnant on methotrexate, but you can stop it and get pregnant when you’re ready).  Fast forward 7 years, and I was married and thinking about these things.  Unfortunately, when I started trying to get pregnant, my rheumy closed her practice.

Doctor #2

I chose a new rheumy, and while waiting for my first appointment (a 3 month wait), I had a miscarriage.  My first doctor had been ok with my staying on Enbrel while pregnant.  Doctor #2 was not.  In no uncertain terms, she told me that having kids was overrated, and that I didn’t need to do it.  I should go back on methotrexate in addition to my Enbrel and forget having kids.  I was furious.

What I didn’t realize at the time, but see now, is that I had developed into a different type of patient.  Doctor #1 guided me through that and adapted with me.  I learned more about my condition, asked more direct questions, and was able to see the big picture of my disease better.  In fact, I was informing my doctor about the Enbrel (the first biologic for RA) trials before long before Enbrel had its name.  She listened to me, researched it, went to conferences about it, and the moment it became available, we were talking about it.

I worked with Doctor #2.  Given we were trying to get pregnant, I didn’t want to wait 3+ more months to get in to see another doctor.  I educated her.  I brought her research on Enbrel and pregnancy.  She eventually decided to allow me to stay on the medication, although I think she made me sign some waivers.  Still, our appointments were stressful to me.  Her bedside “tell me what to do” attitude was irritating to me.  I realized how stressful it was when I got pregnant with my son and my blood pressure was always 20 points higher at her office than at the OB office.  After my son was born, I was flaring horribly.  I got the same methotrexate and Enbrel demand (FYI, methotrexate almost killed me, as I went into major liver failure on it).  I was done, and it was time to find a new doctor.

Doctor #3

I picked Doctor #2 because she was a female (like doc #1), and I thought would be a good match in understanding my wanting to have a family and such.  Obviously that didn’t work out for me.  There were no other guaranteed female doctors nearby, so I decided to opt for a clinic.  There were some female doctors in this large practice, but when you put in a request to be a patient (yes, you had to make a request), you didn’t get to decide what doctor you got.  I wound up with a male doctor who was over 75 years old.  I thought it would be a bad match.  Again, I was wrong.

Doctor #3 was awesome.  When I said, “I know I’m flaring, but I want more kids,” he said, “ok, let’s xray your joints, and if you are looking stable we can stay with Enbrel.”  My disease (pain, fatigue, swelling, etc…) was up and down with him for several years, but all the while, my permanent joint damage remained pretty stable.  He listened to me, gave me options and risks, and let me be the ultimate decision maker.  No stress.  No bad decisions.  Working together.  It was all good, until he retired (for the second time).

Doctor #4

I didn’t change clinics, but rather got a new rheumatologist the clinic assigned to me.  He’s very young, I suspect a few years younger than I am.  He has kids a little younger than my son.  He gets the family piece.  I research things and ask questions.  He answers them, including where the pitfalls in the research are.  He gives me options and risks (if you go off your meds, there’s a 15% chance you’ll flare immediately and not get stable again.  My risk/my decision).  He gives me his opinions when there’s no research to answer my question.  He participates in research.  I love him!

What Kind of Patient Are You?

When I was with Doctor #1, I didn’t know anything about RA.  The internet didn’t provide much, and I really wanted somebody to tell me what to do to get better.  Doctor #1 did that, and as I got more knowledgeable and participated more in my own care, she adapted to that.  She was a great match!

Although I won’t say Doctor #2 was a bad doctor, she was not a good match for me.  She is a great match for my 80 year old neighbor who has Rheumatoid Disease and grew up in an era of “do what the doctor tells ya and don’t ask questions.”

Doctor #3 was also great for me.  I knew I wanted more kids (although that unfortunately hasn’t happened for us).  He kept me in a good balance of getting me where I wanted to go without screwing myself up long-term.  I was more educated by then and quite opinionated about my own care, working all within the medical system.

For where I currently am as a patient, I couldn’t ask for any better than Doctor #4.  Where am I as a patient?  Well, without adding Methotrexate, I probably wasn’t going to see significant changes in my Rheumatoid Disease.  I needed to be better than I was, and I won’t go back on that medication.  I’ve done some big research, and have tried the diet and exercise route to try to improve my RA.  It’s working.  My rheumy sees it, my primary care sees it, and my blood tests agree with it.  Here’s the kicker.  Despite the fact that it’s working so well (well enough that the thought of getting off meds all together is in my head), this “treatment” of my RA is off the medical radar.  There’s not much out there in the medical world to support what I’m doing.  But it’s working, so I’m not going to stop, and no doctor has told me I should stop.  And no doctor should tell me to stop based on what we currently know.  A big focus of my appointment with Doc #4 yesterday was “listening to my body.”  How awesome is that?  My body is speaking to me, and when I choose to listen, I make strides in my health, and not just for my Rheumatoid Disease, but for my health in general.  My conversations with my doctor revolve around what could be true, what information is available, what some organizations outside the pharmaceutical community are talking about.  This is great information, and I would have missed it all had I still been the kind of patient I was back in the beginning.

My Rheumatoid road is 17 years long.  I’m wondering what type of patient I will be 5-10 years from now.  Right now, I am loving the relationships I have with my doctors (not just Doc #4, but my physical therapist and primary care doctor as well).  The bottom line is not what I take, not what I know, but how I feel and what I need to do to keep this body working.  Doctors don’t have all of the answers about rheumatoid, but I love when they know it and help you anyway!

What kind of patient are you?

- Lori

Rheumatoid Disease – Health

For those of you who don’t know, I am now supporting the notion that rheumatoid arthritis (RA) ought to be called rheumatoid disease (RD), to separate it from the notion that it’s anything like osteoarthritis.

So, I had a 6 month check-up with my rheumatologist today.  Even though it wasn’t my best of RD days (very mild “off day”), I’m kicking butt!  I’m doing so well, after examining me, he decided no labs were needed.  How awesome is that and what does that mean?

As usual, I went with a long list of questions.  I love this doctor because he answers all of them for me, and I have a feeling I make him late for other patients (sorry other patients, but there’s stuff I gotta know!)  Conversations were sparked, and I love that because I always learn something.  He noted I appeared to have lost more weight (I had, now at 51 pounds).  I also told him about how my diet has allowed me to tease apart all of these RA triggers and asked him what research says about diet.  I’ve asked this to previous rheumatologists, and I always get different answers.

The answer I got today was that there was very little research about RA and diet.  What research is available isn’t very good, as it mostly asks people to reflect on what they ate (not very accurate).  He went on to say that most research is funded by big pharmaceutical companies, who want to promote their drugs.  There’s no money in changing a diet to treat disease.  I LOVE that my DOCTOR said this.  I have long thought the exact same thing!  And RA/RD, of course, is one of the most expensive diseases to treat.  He also stated that the Arthritis Foundation supports an elimination diet for RA.  I hadn’t heard that before, so I googled it.  This should interest you (especially the second page of the article)…

http://www.arthritistoday.org/news/ra-food-allergies.php

Note the discussion of trying the “stone-age diet’?  Guess what folks!  That’s PALEO!

My doc and I also went on to discuss some of what it would take to do a Paleo or diet  research study.  To do it right would be expensive.  Could you trust people not to cheat?  Could you house people for a month to monitor what they ate?  Could you get volunteers, keep the study small, work off donations…. my mind is spinning right now.  I would LOVE for this to happen!

So, on to further discussion during my appointment.  What is making me feel better?  Is it the diet?  Is it the fact that I’ve lost so much weight (heavier folks in general will have more fatigue and pain)?  I weigh less, that’s less weight on my hips, knees, etc…  My doc says that some research supports the notion that biologics work better when people are a normal weight, but that may only be true because people with lower weight generally feel better whether they have RA or not.  Oh, the possibilities….

Here’s what I think and why I think it:

I was a normal 5 foot 3+ inches, 127 pounds when I was diagnosed.  I was very fit.  I don’t think my weight or fitness specifically was an issue.  I was in a very tough graduate program where I saw students crying under the stress on a daily basis.  Stress was high for sure.  I worked at 4:00 AM, so my sleep habits were definitely messed up.  Lack of sleep may have been an issue/stressor.  I was in college, I lived alone, and I didn’t know how to cook meat, so I didn’t eat much protein.  Diet could definitely have been an issue.  So, basically, I think diet, stress, and sleep are likely high on my “start of rheumatoid disease” list.  Weight loss was only after I ballooned up to 185 (and over 200 when pregnant with my son) as a result of lack of ability to exercise and steroid prescriptions.  Losing that helped, I’m sure, but doesn’t explain it all.

K.R., I want you to think about this part.  I’m not sure if it applies to you, but I want you to think about it.  This thought has occurred to me.  What if my rheumatoid disease isn’t any better than it was pre-paleo?  What if I’m just healthier, so I feel better in general, and therefore my rheumatoid isn’t as noticeable?  My inflammation markers are down (wonder what my numbers were when I was first diagnosed?)  What if my fatigue is better because I’ve managed to learn to exercise with my disease?  I will say I’m nowhere near as strong as when I was diagnosed.  What if I’ve just gotten the rest of my body so healthy (better sleep, food, stress), that rheumatoid disease (arthritis) can’t have as dramatic of an impact on me as it did before I got so healthy?  What if eating all of these fruits, veggies, and meat is exactly what I needed?  What if I can IGNORE my rheumatoid disease?  I have days when I feel dang near perfect, but I still have days when my RD is noticeable.  It’s definitely not gone, but what if I’ve just gotten to a point where it doesn’t matter.  I guess another question is, will it matter in the long run?  Maybe I’m still doing joint damage, but don’t feel it (xrays don’t seem to indicate I’ve had much further damage since 3-4 years after diagnosis, and I’m now in year 17).

What if I’m so healthy in all other areas of my life that having RA doesn’t matter?  Is that possible?  Should my overall health be what I’m treating, rather than rheumatoid disease specifically?  And if so, what specific areas of health should I treat within myself?

I am thinking more and more that folks with RA have more control than they think (and I sure thought I had no control except how often I injected my meds).  What if this whole time I needed to be treating ME and not my rheumatoid?

Think about it!  I’d love some comments here on the blog or on Facebook!

- Lori