RA – Stairs, Sensory Processing Disorder, Flu, and Trampolines… What?

What could all of those things possibly have in common?  Well, it’s a story, as usual.  Sit back and enjoy my crazy mind.

At Christmas, we went to visit my brother and his family.  They have a giant trampoline in their yard, and every time I go there, I want to try it.  I never had though, as I was quite terrified and felt I didn’t have the ability to even walk on it, let alone jump. I probably should mention I haven’t jumped in 15+ years.  My husband was there though, and I REALLY wanted to try it, so I climbed the little ladder and got up there (with my hubby’s help).

I made my husband stand all the way to the side, as I didn’t want any movement from him to make me fall.  Just walking on it was very challenging and exhausting.  My balance wasn’t very good. My son, niece, and nephews wanted to be up there with me, which wasn’t helping.  We didn’t let them get up.  I carefully walked a few laps and got off.  It was hard to not fall, but I had a goal to bounce, even if my feet never got airborne.

A few hours later, I went out again with my husband.  I walked around slightly more successfully, then got off.  Out I went again later, managed to walk more quickly and with more stability.  I was getting “trampoline legs.”  Out again I went later, and I jumped a little.  My feet never left the trampoline, but I jumped.  And you know what?  I expected it to hurt, and it didn’t.  It actually felt REALLY good.  A few more trips out, and I was jumping…. REALLY jumping.  Not high, not fancy, but my feet did leave the trampoline, and it felt REALLY REALLY good.  I was shocked, and now I want a trampoline!!! Wow!  They’re expensive!

Ok, stay with me now.  My son (now 10) has always had a lot of sensitivities.  He is an unbelievably picky eater (so much so that he was under the 1st percentile for weight for some of his infant/toddler years). He struggles with sounds, especially kids talking in class, which makes it hard for him to work.  The slightest bump can make him burst into tears, insisting that something rather minor is very painful.  At 10, this looks rather shocking.  These things (and others), he has always had, in a relatively minor way, but then at the end of January, he got Influenza A.  He had a few complications, such as Enthasitis (which in his case was an inflammation in his heel, which made his calves so tight, it forced his feet into a point, and he couldn’t walk for 5 days).  After missing 9 days of school, he went back with just a lingering ear infection. Apparently they don’t give 10 year olds antibiotics for ear infections any more…. well, until the ear drum ruptures.  He had to endure the pain of that, then he got an antibiotic.  The antibiotic didn’t work, so they started him on a stronger one.  After a few days of the second one (and after being back at school for a week and a half), his sensitivites got way out of control.  I had never seen him like this.  He was throwing up at school because the stress of being near other people with their sounds and movements was more than he could take.  He wouldn’t pet or sleep with the dog, as was his routine.  He didn’t want to go to Cub Scouts or other weekly activities he typically BEGS for.  He didn’t want to leave the house at all.  As a parent, it was frightening, and we got calls from the school at least 3 days a week, if we could get him there at all.  He missed 3 1/2 days due to his extreme anxiety.  We went back to the doctor to ask about ending this new antibiotic early.  His ear was better, but not clear.  We left the decision up to my son, who decided to stay on it the whole 10 days due to not wanting the extreme pain of another rupture.  It was awful.

I have suspected that my son has had a mild case of Sensory Processing Disorder his whole life.  It seemed rather manageable though, and I had some understanding of it, as many of the students I work with (who have autism) also have this challenge.  In first grade, he used sound-blocking headphones for a little while.  In second grade, he was allowed to chew gum.  In their grade (strict teacher, quiet room), he didn’t need anything.  Up until the flu, he did well this year.  Then all of this.

We decided that given how extreme it was, that he needed to be evaluated.  I had some friends who had children with it, so they recommended some books and an occupational therapist.  He is currently on a waiting list for an evaluation.  In the meantime, I have been scouring all of these books looking for help.

I am far from being an expert, but I am learning that there are different types.  There are oversensitive, undersensitive, mixed, and sensory seeking. My son seems to be mixed with heavier oversensitive issues.  There are also different types…. auditory, visual, tactile, smell, proprioceptive, emotional, etc…  As I have been reading, I have been enlightened by my own sensory challenges!!

It’s been interesting, as I didn’t have these issues as a child, but I do have them now.  I think they are being caused by my RA.  What I think I am learning about this is that when you don’t use all of these senses, you start to lose the ability to tolerate certain stimuli.  For example, I never used to get dizzy on amusement park rides, but now, even minor rides can leave me with nausea.  I watch my feet whenever I’m walking on a bumpy or unfamiliar surface, as I don’t feel like I have reflexes to catch myself if I fall. For 6 years, I was unable to walk down the stairs alternating feet.  I had to go sideways, and 1 foot at a time.  Now, even though my RA is under really good control, sometimes I get to the top of the stairs and “forget” how to run down them.  I will still got one step at a time about 40% of the time.  Some days, something kicks in, and I am able to run down without issue.  I am defensive when people, sometimes even my husband, get too close to me.  I don’t have a motor memory of what it feels like to jump.  When I try and land on the hard floor, I didn’t bend my ankles to land in a cushioned fashion.  I don’t “remember” how to do that (the trampoline kindly seemed to cushion for me). I can think of many other examples of these types of things.

I think all of these things are hard because I don’t use skills that maintain them. For years, I wouldn’t have dreamed of trying to jump.  When I finally processed how to do it, I did it and it felt so so so good!  I watch my feet because I haven’t run or moved in ways that tax my ability to catch myself, so my reflexes in those situations are slower.  I didn’t like to be touched because it was painful.  That has turned into flat out not liking to be touched, even though it’s not painful anymore.

So, my questions for those of you out there are, have you experiences these things?  Have you thought through why it is so?  Does it impact your relationships?  I am in the midst of a great book, The Out of Sync Child.  It describes these things wonderfully.  I think I might need to make a goal for myself this summer to get some new (or old, as the case may be) sensory experiences.  I want to know if it helps.


RA – Cleaning the Floors Just Got Easier

Ok, I make a sucky housekeeper.  On the days that I work, the dishes pile up, then I run them all through the dishwasher on days that I’m off work.  If you want to see my house in good condition, better call ahead (the further ahead, the better).  And you know what?  I try really hard to not care (within reason) that my house is pretty messy.  I do care though, especially when my family comes to visit.  No offense you guys, but you’re judgy!

Cleaning the house sucks a lot out of me.  Washing windows, wiping counters, etc…. for any length of time does my hands, wrists, and sometimes right up to my shoulder and neck in.  I don’t sweep my floors.  I vacuum and Swiffer them.  I have a lightweight vacuum that does a fair job, and seems to be more effective and less stress on my joints than the broom and dustpan (especially since I lost the ability to squat 10 years ago).  This only works on our linoleum and faux wood.  Our bedrooms, stairs, and hallway are carpet, and that necessitates the heavy vacuum, which really can do me in.

Two weekends ago, we had my son’s 10th birthday party.  Well, actually, parties.  He had a Friday night sleepover with 4 boys, then a 2:00 PM party on Saturday with the family.  I cleaned for days, and actually felt ok until Saturday night.  Then, I felt AWFUL for a couple of days.  Ugh.  It probably wasn’t all just cleaning.  There was cooking, little sleep, and a few days later, kidney stones.  I’m sure it all contributed.

Saturday night after the parties, my neighbor came over and told me about her new contraption, the Roomba.  She had a friend who had a large hairy dog, and she was convinced to get one after seeing how well it did on her friend’s house.  I’ve seen them before, but they’re so expensive, and I wondered how effective a vacuum that size could be.  Well, she convinced me, and I convinced my husband.  Yesterday, we went out to Costco and bought a Roomba (one of the cheaper ones, yet still more money than any other vacuum we’ve purchased).  I charged it overnight, woke up this morning, clicked a button, and told it to clean my downstairs.  And it did. And it was wonderful.  I did a little Swiffer wetjetting over the top of it, and it was great.  I am actually impressed.  Of course, I’ve only had it for about 24 hours, but it did a fairly good job, definitely took a load off of me, and I’m completely satisfied with the job it did.  I don’t know about its longevity, but time will tell I guess.  My aunt and uncle got one 12+ years ago, and it’s still going.

Anybody else have a Roomba?  Does it help?

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 – 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:


Rheumatoid Arthritis – I Can’t Believe I Did It!

In case you didn’t know about the adventure we were undertaking, you may want to check out this short post: http://rapaleo.momswithra.org/wp/?p=361

Because we had little idea how long it would take or if it was even possible to get into the cabin area, we left very early.  We were up at 4:00 AM, on the road by 5:15 with a stocked car (donations for those who stayed and are rebuilding), and at the National Guard checkpoint by around 8:00 AM.

Starting to pack the car for a trip into flood ravaged Glen Haven.  Supplies for the folks who stayed.

Starting to pack the car for a trip into flood ravaged Glen Haven. Supplies for the folks who stayed.

For us, we took a wagon, adjustable walking sticks, extra food and water, backpacks, hats, rope, etc…

The National Guard was checking folks for ID and validation they had property in the area.  Luckily, my aunt and uncle had supplied us with that documentation.  We were able to pass the first N.G. road block and carefully make our way down a road that had sections/entire lanes missing.  At a certain point, there was another road block.  We were told not to pass that one, but to park and walk in.  We parked the car, got out the wagon, loaded it, and set off down the now severely damaged road, where there were points where the asphalt was intact, but there was no soil under the asphalt.  There were telephone poles down and wires everywhere.  There were cars barely visible in mud.  Although the river was much lower, it was still high and running outside its normal course.  Although I had seen pictures of the town, I couldn’t figure out what was what.  It now made sense.  All of the landmarks were gone; cabins and businesses were gone down the river like they never existed to begin with.  I took several videos to send to my aunt and uncle, so they could get their bearings before their trip up.  We walked through town.  The Town Hall had crashed into the General Store and had 20-30 feet of debris piled up against it.  Past the General Store, the town ceased to exist.  Everything was gone, including the road.  Where 2 small creeks joined, there was now a raging river running down what used to be the road.  This was a week after the rains stopped.  I wonder if the course of the river will be forever changed.

When I hear about folks refusing to be evacuated, I used to think of them as insane.  For this area, it sort of makes sense.  The folks who live here year round are used to being snowed in for long lengths of time.  They’re generally well stocked and are true “mountaineers.”  Those folks that stayed built 2 bridges that were very helpful for us, as we had 2 rivers to cross.  The first was made of 2 fallen trees with boards (likely scrap wood from what used to be homes) secured between them.  The second was… well…. terrifying.  It was an extension ladder, pretty fully extended from the bank of the river to a downed tree in the middle of the river.  There was then another extension ladder from the downed tree to the bank on the other side.  Both ladders had wood on top of them, wood that appeared to be cracking.  At this point, we packed our backpacks, left our wagon behind (something we figured would happen), said a prayer, and over the extension ladders we went!  I’m not sure if it was comforting or alarming that there were life jackets on either side of the river.  At this point, I realized I was not a mountaineer, but so proud of the folks for their craftiness and honored we were allowed to cross there.

Extension ladder bridge.  Note how narrow the far side is.

Extension ladder bridge. Note how narrow the far side is.

From that point, we had hoped to wind our way along the road, knowing it would be down to rock and debris, but thinking it would be slowly passable.  WRONG!  The old little dirt road we were trying to get back on was now one of the two creeks, rivers, whatever you want to call them.  Anywhere near the valley floor was not going to be possible to walk.  Luckily, some hardy folks happened by and told us about a trail.  So, up the big mountain we went!

I was so glad to have my walking sticks with me.  At times, the terrain was steep, and my feet don’t have the bend in them that they should.  My walking sticks seem to help keep my posture good (not sure how that works, but I usually end of with low back pain walking long ways without them, but not at all with them).  They also help me with stability.  We kept walking up, a lot higher than I wished we had, and was afraid we’d be too high up to get down to the cabin.  The cabin is right on the river, but we had a hard time finding it through the forest trees.  I was becoming discouraged at this point, when I saw a home I recognized, and knew we were close.  I can’t believe my husband found a way to get down the mountain side that I was able to do.  I can’t begin to describe it, other than to say I couldn’t photograph it as it was so high.  But down we went, careful as the ground had been wet.  Boulders and small mudslides had come down, leaving behind a very unsteady loose path.  We were now at the bottom near the river, maybe 200-300 feet up from the cabin, but of course, on the wrong side of the river.  At this point, I realized my limitations.  I was not going to be able to cross the river, nor was my son (who, by the way, was such a trooper!).  My husband tied a rope to a tree, tied it around himself, and slowly (and to me terrifyingly) made it across the river.

The cabin was in very good shape considering its proximity to the river.  There were trees down, the footbridge is gone like it never existed, and there’s some deck damage.  The erosion is crazy, and there’s little of anything to walk on at the opposite side of the river.  The mountain side is probably 3-5 feet from the river.

Extreme erosion with exposed tree roots, which will probably kill the trees.  Note the fallen tree to the left.

Extreme erosion with exposed tree roots, which will probably kill the trees. Note the fallen tree to the left.


A year ago.  Bridge no longer exists.  Bank of the river behind us is mostly gone and is now a jumble of tree roots, which will probably die and fall.

A year ago. Bridge no longer exists. Bank of the river behind us is mostly gone and is now a jumble of tree roots, which will probably die and fall.

After my husband finished making all of the repairs he could and helped out the neighbor with a bit of food and water (she, a true mountaineer, stayed behind and is watching over everything), he came back across the river.  In the pic below, note my crocs, my shoe of choice for years, worn only that day in case I had to get real wet!

At the river, getting ready to ascend the mountain.

At the river, getting ready to ascend the mountain.

So, we went back up the mountain.  This was hard.  Twice, I had to ask my husband to give my butt a shove so I could get up.  Still, we got up, came back down the trail, went back over the scary ladder bridge, got our wagon, went over another bridge, then made our way back through town to the car.  I’m trying to remember how long the walk took, but I believe the round trip (including cabin fix time) was close to 7 hours, maybe more.  By now, there were several folks in town, and the fire station was open.  We loaded our wagon and a man’s ATV with supplies we brought in (food, dog food, nails, screws, cleaning supplies, toiletries, water, gloves, masks, etc…).  We took them to the fire station.  We tried to make contact with some friends of my aunt and uncle’s before leaving, but they were probably out building a bridge somewhere!  We then left and were home by about 8:00 PM.  What a day!

So, how am I doing?  I thought I had to be crazy to take something like this on.  Maybe insane.  Yet I did it, and I did it without too much difficulty, granting I didn’t try to get across the river.  I did take 2 ibuprofen, 1 after we ascended the mountain from the cabin, and the other in the car on the way home.  My neck was stiff while driving home, either from the backpack or using the walking sticks so much. By this morning, I feel remarkably great, I daresay better than my husband.  In all fairness, he had some extra duty (crossing the river, fixing the cabin, carrying heavier things, helping our son) than I did.  Still, my body feels really good, and in fact, I have definite increased range of motion in my knees (can somebody explain that?)  So, the trip didn’t “do me in” as it would have pre-Paleo, and I surprisingly rocked that adventure, given my 17 years with RA.  And I’m celebrating it!

Video: During Flood, Town Hall Crashed Into General Store




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


Adapting – Edema Gloves

So, I thought that I only had one more post on hand adaptations, but it turns out I have two!  I would have forgotten about these little babies, except I hurt my knee.  Yes, my knee.  I keep overdoing it on the flippin Pilates Reformer, so bad that this morning I needed to put a knee brace on for a few hours.  Of course there, stuck on the velcro of my knee brace, were my edema gloves!  Ha!  Another hand adaptation post!

Edema Gloves, keep the swelling down in my hands

I got these edema gloves when I got my hard splints, during stint I had with an occupational therapist around 2007 or 2008.  They were one of those things that I didn’t know I needed until I needed them.  Basically, they’re good for keeping the swelling out of your hands.  Given I’ve lost 51 pounds, I dare say I might need a smaller pair.  I don’t think these are tight enough now, BUT they still do work, especially when swelling wants to creep in.  You do have to be careful though.  If you’re too swollen, they can dang near make your hands turn blue (ok, yeah, no near about it… one day my hands were blue!).  I’m not sure what you’re supposed to do then… take them off I suppose.  Swollen hands are better than blue hands?  You know, I always think of these questions when I’m no longer seeing the person who could answer them!

Anyway, I tend to wear them at night on occasion.  If I’ve had a bad RA day or better yet, if I did something stupid with my hands that I know I’m GOING to have a bad RA day tomorrow (you know, like paint the garage, shovel dirt in a wheel barrow all day, or something REALLY stupid like wash the windows). I put the gloves on and sleep in them.  They don’t keep all the swelling out, but they keep some. Wait, who wants a bad hand day in honor of clean windows?  Yeah, you’re a sicko!  Or your family is coming to visit, in which case you’re partially forgiven!

Edema Gloves - Can you wash them in the washer? What if they shrink? Does it matter if they shrink? Why don't I ever think to ask these big questions? Or why doesn't it come with washing instructions? Hmm... Am I a help at all?

These were ordered (with input on correct size) through an occupational therapist.  In other words, I recommend you talk to one to make sure you get the right size and instructions.  And find out how to wash them.  And come back here and tell me!

Love to all!



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.