RA – An Update

I had two doctor’s appointments this week, one with the rheumatologist and one with the Paleo physician’s assistant.  I didn’t have any tests done at the rheumy’s (by my own choice).  I did have a few done with the PPA, but I don’t have the results yet.

I’ve been struggling a little more for the last year+ due to some thyroid issues.  I had my thyroid radiated and destroyed in 2007 (a decision I now regret) because of Grave’s Disease.  Given how hard it has been to keep my body happy since my thyroid was destroyed, I wouldn’t have fallen for the “simple solution” of radiation. 

If you have thyroid issues, make sure your doctor is doing more than a TSH test.  My TSH was normal, as was my T4, but my T3 was extremely low.  If you take Synthroid or Levothyroxine, these are primarily T4 medications that your body must convert to T3 to be useful.  My body was not converting.  Now I take less T4, but I also take T3.  It has taken almost a year to feel better.  My T3 still hovers at the low end of the normal range, but if I take more medication, I don’t sleep.  My periods had gotten way out of whack… as in 8-9 days long, the first few days of which were so heavy that even with hourly restroom trips, I always leaked through my clothes.  I wasn’t sleeping.  I was constipated.  I was more itchy than my itchy normal.

Just within the last 4 months, my periods have started to normalize. My adrenals seem to be happier, and my thyroid levels are measuring better, although still not as good as I’d like.

I started taking an additional supplement, Oil of Oregano.  I started taking it because it was supposed to be a natural antibiotic, and I was having a hard time getting over the flu.  I don’t think it helped my flu, but it helped my RA quite a bit.  It’s not something you’re supposed to take all the time though, so I take it for a week or two, then stop for a week or two.

At my doctor’s appointments though, here is what I found myself saying:

  • I felt good.  I had energy.
  • My RA is much better.
  • I am taking my 25 mg Enbrel every 10 days instead of every 3.5 days.
  • I am sleeping better.
  • My periods are nearly normal.
  • I’m not constipated any more.

I was at day 10 for Enbrel when I saw the rheumatologist.  He said my joints looked the same as before (which is good…. I have 3 swollen joints that seem to be permanent soft tissue swelling rather than active RA).  This is with less Enbrel.  This is good.

Although I didn’t have all the testing done, I suspect that my numbers would say I’m back in remission.  This is good.  I may have the numbers run later in the summer.

In case you’re wondering what I’m doing (this will be different for everybody), here it is:

  • Enbrel shots, 25mg every 10 days
  • Paleo Diet (no grains, dairy, legumes, tomatoes, white potatoes, minimal egg)
  • Levothyroxine, 125 mcg 2x/week, 112mcg 5x/week
  • Liothyronine, 5 mcg every AM
  • Vitamin D, 2000 IU every morning
  • Vitamin B complex with methylfolate (NOT Folic Acid) 1/day
  • Magnesium Glycinate 400 – 600 MG daily at bed time
  • Oil of Oregano capsule, 1/day for no more than 2 weeks at a time
  • Vitamin C powder (not taking as much, not sure it helped)
  • Quercetin (taken if I know I am eating a high histamine food, which helps with itching)
  • I also revisited my egg tolerance and determined that I can’t have straight egg and that I can have it as a small ingredient in something only on rare occasions.  Brain fog was helped a lot when this was taken out.
  • I revisited my nut tolerance, and still found it to be ok, but still have to figure out if high dose, ground up nuts are ok, as those recipes also tend to include egg, so it’s hard to tell what the problem is for sure.
  • ***Trying*** to stay away from the computer/electronic screens for an hour before bed.
  • Increasing my carbs.  I’ve been doing this since last summer. This is hard, as I am more hungry with increased carbs, and I’ve put weight back on.  It doesn’t make me happy, but I think there is good reason for it, and I think it helps my adrenals, which seemed under double attack from my low thyroid and lower carbs.
  • I’m supposed to be exercising and meditating. I am still struggling with both of these. I will exercise for a while, then quit.  We’ll see how summer goes. The increase in daylight hours right now is making me feel wonderful, and I’ve been going out and sitting in the sun.   AHHHHH!

Love to you all!

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.

 

Recipe – Turkey Soup

My poor mom was not a grand cook.  If she was still alive, I think she’d even fess up to that, as she always told us as kids that her mother NEVER let her cook anything.  She could follow a recipe and have everything turn out fine (minus the fact that she had a knack of burning muffins).  She just didn’t have any seasoning instinct.  Not even salt or pepper.  As a matter of fact, my brother called me during his first semester of college, after eating cafeteria food, and commented on how mom didn’t know how to season.  In other words, I grew up on a very bland diet, typically meat, and boiled vegetables (you know, the frozen bagged ones like “mixed veggies” or lima beans… boiled, drained and served).  I never learned to season either.

Well, about 16 years or so ago, I set out to have some understanding of how to season things and how to cook/season without a recipe.  I started off with going through all of my herbs and spices in my cabinet and reading the labels, which kindly told me things like “goes well with poultry.”  I then set out to make my first “winging it” recipe…. turkey soup.

My soup was probably ok, at least enough that I kept experimenting.  My soup was probably something to the effect of turkey, water, vegetables, and seasonings. As time went on, I would make dumplings and throw them in there (so good, in my pre-Paleo days).  I remember being a bit scared of trying to make soup, as I imagine others might be too, if you’ve never made a bone broth based soup.  If you’re nervous, here’s the gist…. it’s hard to screw up.  At best, it’s delicious.  At worst, it’s watery or you got some bones in it.

I doubt I’ve ever made it the same way twice, and I’ve never measured, but here’s the basics:

You need a big pot or a big crock pot or both, if you have them.  I find it easier (and faster) to cook the turkey in a pot.  Generally, I use a leftover turkey carcass, like one which we ate for Thanksgiving, and all the big meat is off.  I will often freeze the carcass in a big plastic grocery bag after eating the “easily obtainable meat”.  I then pull it out at a future date.  It typically makes a big pot of soup.

Take your giant carcass out of the freezer and plunk it in your big pot.  My big pot isn’t typically big enough to hold the whole carcass, so it’s usually hanging out the top quite a bit.  Sometimes a little messy, but no worries.  Cover as much of the carcass with water as possible, leaving room for a good boil at the top.  Try to cover the top if you can, even if the lid won’t seal.  Boil the turkey.  The longer it boils, the more the bones start to fall apart at the joints, and you can start pushing that big part at the top down into your pot.  I usually boil 1-2 hours, as low as I can that still creates a good boil (usually high at first them medium to medium low as it heats up).  Keep the lid on as secure as possible.  You don’t want all of your water to boil out.  If it does, add a little more.  When your turkey is a relative pile of bones, and the broth has a sort of milky appearance to it, you can turn it off.

If you have another giant pot or crock pot, I start that going right after the turkey.  If not, no biggie.  You can start it after the turkey is done in your original turkey pot.  In your second pot/crock pot, I put about 12-16 ounces of water, 1 pound of carrots (usually those carrot sticks already cut for you), one whole yellow onion, diced, and about 6 celery stalks, diced.  Then I add some or all of the following herbs (a teaspoon, a tablespoon, I don’t know.  Just shake it in there.  It will be ok):

  • Rosemary*
  • Sage*
  • Thyme
  • Basil
  • Oregano
  • Bay leaf
  • Poultry seasoning
  • experimenting with majoram

* If you’re going for that “comfort food” flavor, I think rosemary and sage are essential. 

If all else fails, you can dump a pile of Italian seasoning in, and it’ll be good too.  Cook your veggies on low/medium while the turkey is going.  You want them to be tender, but not mushy, by the time the turkey is done.

After your turkey is done boiling, you need some tongs, a slotted spoon and 2 big plates or platters.  Pull your turkey out of the broth with tongs/slotted spoons, and put it on a plate.  You need to wait a little while for it to cool.  KEEP THE TURKEY BROTH (the water you boiled the turkey in).  It’s the BEST PART!  I used to separate the broth in a gravy separater to get “the grease” out. I don’t do that anymore.  Eat it all.  It’s delish.  If you’re using a second pot, separate the turkey meat from the bones and skin.  Put the bones on your empty plate and the turkey in with your veggies.  You’ll have to pull some of the turkey meat out of little crevices.  Avoid putting bones in with your veggies.  Get ALL those little turkey pieces, the dark, the light, it’s ALL good.  Next, you need to put your broth in with your veggies.  I usually do that by very slowly pouring it from one pot to the other.  Usually all the bones sink to the bottom, so you can avoid getting them in with the veggies.  Pour as much as you can into the veggies.  Heat the whole potion back up, and you’re golden.  If you’re not Paleo, Bisquick has a pretty awesome dumpling recipe you can do at this time.

If you only have one big pot, you’ll need to get the bones out of your big pot.  You might pour your broth into a smaller pot, get the bones out of the big pot, then put the broth back in the big pot.  You can then add your veggies, turkey, seasonings, and a little water.  You’ll need to cook a little longer until your veggies are tender.

You can store your leftover in the frig or freezer.  Cold soup may congeal and look like jello.  No worries.  It’s still good.  Just heat it up to return to soupy consistency.  Enjoy!

 Turkey Soup

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?

Recipe – Paleo Turkey Pear Salad

This is my new favorite Paleo recipe.  It is SO good.  I modified it from a recipe I had at a restaurant.  It has balsamic vinegar in it, which I shouldn’t eat as it make me itch.  UGH, but it’s so good!  And I’m trying to get off nuts.  Eggs have been out for a couple of months, but the nuts have not been <sigh>.

It’s that time of year when frozen turkeys have become widely available for the holiday season.  This usually lasts from some time in October to January, possible even March, depending on the store.  On sale, frozen turkeys are a pretty cheap source of protein, and we make about one per week during this time of year.  That means that by spring, we’re pretty sick of turkey.  I’m always looking for new turkey recipes!

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Recipe -Paleo Turkey Pear Salad

You’re gonna LOVE my measurements!

  • Handful of bag o salad (I use a 50/50 spring and spinach mix usually)
  • Small handful of leftover baked and shredded turkey
  • 1/2 avocado, sliced
  • 1/2 red pear, sliced
  • A few whole pecans (10 maybe)
  • Some dried cranberries (20-25 maybe)
  • A small sprinkle of balsamic vinegar

Dump it all in a big bowl (yes, I’m eating it out of a serving bowl), mix, and eat.

I’ve also added thinly sliced red onion, but the last time, I got an unusually strong onion, and it was so awful that I haven’t used it since.  It still might be good, if not so strong.

RA – My Feet

I was diagnosed with RA in 1996.  I had 3+ years of hell, then got on Enbrel around October of 1999.  Right before going on Enbrel, I had my feet xrayed.  They were bad. I remember the radiology report saying that one of my toes looked broken.  The base of my 2 littlest toes on both feet had been bad since the 1990s.   Enbrel kept me in pretty good shape from 1999 to late 2005.  In 2006, after I started flaring in December of 2005, I had my feet xrayed again.  The damage was stable and not getting worse, so I stayed on Enbrel.  Well, my flare lasted fairly severely until 2010 and moderately until 2012 when I started Paleo.  Somewhere between 2006 and last week, I sustained quite a bit more damage to my toes. I’m not having any trouble with pain or walking.  My biggest complaint is my little toes on both feet are turning in and I now have (just learned this from the podiatrist this week) tailer’s bunions on both feet.  The bunions are the biggest problem and with toes turning in second.  I was hoping for some sort of brace to wear at night (the toe straightens a good deal when I walk).  I see the PT on the 16th. 

Ever wonder what other people’s reports sound like?  Here ya go:

INDICATION: painful equinus and forefoot evaluation of forefoot due to RA, shifting of toes, effects of RA on joints

COMPARISON: Radiograph dated 4/11/2006

FINDINGS:

Left foot: Compared to the previous examination, the sequela of rheumatoid arthritis in the foot has progressed most notably at the mid tarsal phalangeal joints with there are new both acute and chronic bony erosions at the third metatarsophalangeal joint and fourth metatarsal phalangeal joint. New osseous erosions are also present at the head of the fifth metatarsal. The largest bony erosion along the medial aspect of the fifth metatarsal head is unchanged. There is periarticular osteopenia centered at the metatarsal phalangeal joints and proximal interphalangeal joints of the toes. Mild subluxation at the proximal interphalangeal joint of the third digit. Moderate to severe osteoarthrosis is present in the midfoot most notably at the navicular medial cuneiform articulation. Soft tissues are unremarkable.

Right foot: Similar progression of marginal erosions involving the metatarsal heads and base of the proximal phalanges of all digits. There is mild subluxation at the metatarsophalangeal joint of the fourth and fifth digit. Diffuse there together osteopenia seen in association with early marginal erosions at the interphalangeal joints of the toes. Mild midfoot osteoarthrosis. No soft tissue abnormality.

Impression

IMPRESSION:

Sequela of rheumatoid arthritis with periarticular osteopenia and marginal erosions at the metatarsal phalangeal joints and interphalangeal joints of the toes bilaterally. Findings have progressed when compared to 2006 exam.

Early subluxations at the metatarsophalangeal joints of the toes and interphalangeal joint of the left second digit.

RA- Thyroid Vs. Adrenals

So, if you read my last post, you know I was bitten pretty severely earlier this week. My bite appears to be healing (below is a picture of day 6), although it looks really awful.  It’s been a crazy week.  FOUR doctor visits…. yeah, really.  Only Doc #1 was for the bite.

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Interestingly, as a result of the bite, I think I learned some things about teasing apart thyroid from adrenals.  I thought perhaps both my adrenals and thyroid were doing a bit better, up until the bite.  When I got bit (on the calf, a “lock on” bite that lasted about 20 seconds), I was extremely calm.  I knew there was nothing I could do to stop it or make this student let go, so I stood there and waited.  When it was done, I continued working for over an hour (maybe 2?) until we could get more folks to help, and I could go to the doctor.  By about 30 minutes after the bite, I was shaking, cold, very very irritated, having problems thinking and recalling words, etc…  This had a very familiar feeling.  It felt like I just stepped back in time 2 months to before I started treating my adrenals.  I think my adrenals just took a big whack, as I stood there, as calm as possible during the bite.  Now, I imagine, my cortisol is high again. These are the effects.  I also haven’t had a good night sleep since the bite, and I had been sleeping really well for several weeks.

Doc #2 Endocrinologist (for my thyroid issues):

When my thyroid is off, my RA is off, so it’s something I need to stay on top of.  My thyroid continues to drive me a little crazy. I am now on levothyroxine at 112 mcg (a decrease from 125 mcg) and liothyronine (a T3 supplement, as my body is not converting T4 to T3) at 5 mcg.  They wanted me on 7.5 to 10 mcg, but I just can’t sleep when I take that much.  After 2 1/2 weeks at 7.5, I went back to 5 on my own.

My periods are coming every 20 days, and lasting for 8 of those 20 days.  Thankfully, they’re not real crampy or anything, but they are extremely heavy.  They were up to 26-28 days (my normal is 30) when I was on 125 mcg of levothyroxine.  My skin is super super itchy, my hair is falling out, and I’m constipated.  Ahhh, life is entertaining.  Did I mention that I feel like having my thyroid radiated was my biggest medical mistake in my life?

Now, the good things are, I had been sleeping much better (once back down to 5 mcg on the liothyronine several weeks ago).  I hadn’t been sleeping well in months prior to that.  I had been thinking clearly, not having significant word retrieval issues, not as cold, etc…  I had been thinking these improvements were a result of getting treatment for my thyroid issues, but now I think differently.  These issues all changed within minutes to hours of the bite.  I don’t think my thyroid had anything to do with these improvements. This was adrenal improvement!

I told my endocrinologist (first appointment with my old endo, as I had a different one for 3? visits) about my adrenal salivary test results.  Although she didn’t outright say it, it appeared she thought it to be quackery.  I told her that 3 of the 4 times I was high and 1 was normal.  She told me that I was supposed to be normal/low at night, and that this wasn’t abnormal.  When I told her I was high at night, and the Paleo doc thought this might have to do with my poor sleep, she seemed surprised.  She then wanted to see the results. Now I have to find where I put that paper!

Test results: T4 middle of average range.  T3 low end of average.  TSH low end of average. I’m going to slightly increase my T4 (levothyroxine) 2 days a week to see if that helps my periods, itchiness, hair loss, and constipation.

Oh, and she saw my bite and thought I should be on antibiotics, which I was not prescribed.  She was a bit shocked.  That unnerved me a bit.

Doc #3 The Podiatrist:

I don’t think I’ve ever seen a podiatrist for my RA, but my rheumatologist recommended seeing one, as my 2 little toes are turning inward.  I wanted to get some splints made to hold them in place at night, and he thought this would be the place to go.  Apparently not, and she was not real sure where to get them made either, so I’m going back to physical therapy to get some exercises to do with them and maybe custom splints if the can.  She also wants me to get orthotics for my shoes, although I have to admit that I am very hesitant to do this.  My feet do not bother me when I walk, and we both agreed they look really good for 19 years of RA.  She seems to think my toes are curling a bit.  I think it’s just one toe, and it’s been like that since 1998, and I don’t see much reason to change things now.  We’ll see.  I’ve actually been thinking about trying more minimalist shoes (without much sole on the bottom).

Well, then she ordered x rays, and admittedly they came back quite a bit worse than my last ones in 2006.  I was a bit surprised.  My littlest 2 toes have had a ton of permanent damage since the late 1990s.  That was not surprising.  Now it appears my middle toe does too.  I was not aware of this, and it doesn’t cause me pain to walk.  When she pushed on them, I did note some mild-moderate pain.  There are also some other joints in the report that I can’t even figure out where they are that are having some issues.  I really want to know when that damage occurred.  I was in a horrible flare from Dec. 2005 until 2012.  The last xrays were in 2006 (not sure of the month) and showed no further damage than x rays in 1999.  The current x rays said there was no notable soft tissue damage.  Does that mean my feet are not currently flaring, and this is old damage?  I’m confused.  I will take the report to my PT and try to get a better understanding.  She’s good, and always takes the time with me.

Doc #4 The Paleo Physician’s Assistant (for my adrenal/RA/thyroid issues):

I’m doing better. That’s the cool thing.  I’ve implemented most (but not yet all) of the things she asked me to do.  She asked me to do then one at a time, and I’ve had a few hiccups along the way, so I think that’s ok.  I am now on 600 mg magnesium glycinate, 1,000 IU Vitamin D (she’d like me on 4,000, but I have some worries), a daily B Complex with methylfolate, lots of Vitamin C, going higher carb while I try AIP again.  This time, I am eliminating 1 food at a time rather than all at once.  I removed eggs, and I think that helped a lot with my mental clarity (planning, word recall, etc…).  I cut back on nuts, but haven’t eliminated them yet.  Phosphatidylserine is something I’ve tried twice, but made me feel intensely hungry, barfy, and dizzy.  I will try it again, but that might be a no-go.  There is one more herbal supplement she wants me to try.  Plus more exercise and meditation.  Yeah, I’m just thinking “Calgon, take me away!”

Did I mention that a couple of months ago (around June or July) I got “addicted” to the ibuprofen again?  I wasn’t able to sleep without it pain-wise, and I know it long-term makes my RA worse.  Then I was up to 3-4 a day in early August or so.  Now I am down to 3-4 a week, which is a huge improvement.  Since the bite, I am feeling like I want to take it more.  My RA seems to be a little worse since the bite, but I am trying to stick to my 3-4 per week.  Hopefully my system will calm down again, and all will be well again.

She also looked at my bite, asked me if I was on antibiotics, and was surprised that I wasn’t.  She said that used to be the standard of care.  Again, unnerving.

Something Else I Learned:

The workman’s comp doctor had asked me if I ever had the Hep B vaccine.  I had, as my last job mandated it, back in the late 1990s.  It was a 3 shot series.  The doc called me back after my test results.  They tested me for Hep A, B, and C, as well as HIV.  All were negative, however, I didn’t have antibodies to Hep B, meaning the vaccine didn’t work.  It’s supposed to work for life.  Talking to some of these docs, it is likely that I was too immunosuppressed for my body to have the appropriate reaction to the vaccines.  So now the question is whether to get the vaccines again, get a booster, or give up as maybe it won’t do anything anyway.  This brings into question whether any of these vaccines have worked for me in the past (flu, pneumonia, whooping cough, tetanus, etc…)

I guess that’s about it for the updates. I hope you all are well.

Life – It’s Been A While Since I Posted.

Oh, I hope I’m not about to alienate all of my followers!!

This is one of those crazy posts that you make after a long month of work and 2 rum/water/juice/vitamin C combinations.  Oh yeah, it’s that crazy!  I’m implementing my Paleo doctor’s recommendation of vitamin C (liquid form) into an after work drink.  My drink: 3/4 water, 1/4 mango juice, and oh to make it above 100%, we’ll call it a splash of coconut rum and 1/2 tsp of vitamin C.  It’s been a rough few days.

I have to be honest that I try not to let my private life interfere too much with my website, as I’m a very opinionated person, and I don’t want to alienate anybody looking for help with RA.  Call it a rough week, the drink, or the exhaustion speaking, but I thought I would air it all for the world to see…. this one time.  Please forgive me if you share different views.

I suppose it’s not hard to figure out from previous posts that I lean toward that hippie side of life with worm composting and solar panels.  I realize more and more every day how privileged I am in this world that I have the opportunity to get my medications for RA, choose more expensive foods that are healing my body, work part time, and still enjoy a somewhat comfortable middle class life style.  I can’t tell you how lucky I feel to have married a man who supports me in my endeavors and acknowledges, without (much?) judgement, my weaknesses.

My new favorite word (besides “snarky” which is totally fun to say) is “privilege.” I see more and more every day how lucky I am in this life, and how others aren’t always able to meet life’s challenges in the same way. 

I’m a speech-language pathologist (SLP).  I’ve been working with kids who have profound autism for over 18 years.  I work with challenging kids in a Kinder – 6th grade program.  A typical kid coming into kindergarten in our program would not have communication skills in any basic way, not be potty trained, and not interpret the world in a way that would make sense to most people.  Most of our kids come in with some form of aggression as a way to get what they want.  I feel like this job is my calling.  I feel good at it.  Where most SLPs in this position leave after 1-2 years, I’ve been in my current job for over 15 years.  The program I’ve helped to set up structures everything very clearly for our kids.  It’s not perfect, but I’ve had the joy of having kids say their first meaningful words in kindergarten.  I’ve been able to take children who are very aggressive (as this is typically the only way they know how to get their needs met) and get them organized, calm, and communicating.  It’s not every kid.  I don’t have a magic pill, just patience, persistence, and knowledge.  But it’s a lot of kids.  It’s enough kids to keep me going back year after year.  I had the awesome experience this last spring to hear one of my former students, initially nonverbal, who ripped all of the outlet covers off the walls the first day I worked with him, give the commencement speech at this high school graduation.  His dad nominated me for one of those “everyday hero” awards on the radio.  It doesn’t get much better than that.

For about 10 years now, I’ve been working part-time.  Initially, this started as somewhat of a nervous breakdown.  My full time job was stressful, working 2 1/2 days a week in the autism world, and 2 1/2 days a week serving moderate communication needs in a high poverty school.  It worked for 4 years until it didn’t.  In one school year, I sold my house, was “homeless” (aka living with friends), got married (while “homeless”), bought a new house, had friends live with us temporarily (waiting for their house to be built), had my in-laws (very nice folks) temporarily live with us, was in a major car accident with my husband in which he broke several ribs and transverse processes of his spine, and I had to have the upper left quadrant of my face reconstructed, the ensuing medical bill nightmare, the death of one of my students in a house fire that he started, the death of my grandmother, and a miscarriage.  Quite literally, I cracked somewhere around the death of my student.  With an extremely understanding husband, and the thought that it would be temporary, I went part-time at work, working only in the autism program.

Well, then I got pregnant, had my son, and the ensuing RA nightmare that I didn’t really ever fully recover from, although certainly became as “normal as possible” 7 years later after starting Paleo.  I’m still working part-time.

The thought has come to me that I should go back to work full time.  We could use the money.  We live cheap (no cable, no cell phones, old cars, etc…) to allow me to stay half-time.  Unfortunately, the “old cars” caught up to us, and in the past 3 years, both of our vehicles had to be replaced, which included dreaded loans. 

I love what I do.  I feel called to it.  I’ve been able to see many miracles that I don’t think happen all that often in the autism world.  I feel like I’ve had a big part in those miracles.  Again, not for every kid (oh, how I wish), but enough. 

Here’s my dilemma.  I cannot work in autism full time.  I went to physical therapy for 2 years, on my own (thankfully heavily discounted) dime, to be able to continue doing this job.  It’s physically demanding.  I am exhausted at the end of every school day.  I probably change 30 diapers a week on kids who sometimes beat on me while doing so.  I need to lift kids, some kids who are heavier than me.  When kids are struggling, or having medication changes, or not sleeping, or dealing with changes in their lives, I put my body between theirs and peers to protect.  Although it’s not typical, I get hit, bit, scratched, have furniture thrown at me, head butted, punched, etc…  And every day, I do my best to hold no grudges, go back and demand a student’s best efforts, try to not be afraid, and to know and understand that my kids see the world differently.  I try to make my demands simple, clear, organized, and rewarding in a fashion that my kids understand.  Yes, I know you can do this simple task. Yes I know you’re used to getting your own way, sometimes by hurting others.  Yes, I know this is not you, but your interpretation of this world.  Yes, you need to do this task to learn and grow and function in this chaotic world you struggle to understand.  Yes, I will sit and wait until you are ready, even if that means you are mad, even if that means you scream and hit, even if that means you don’t want to, even if it takes two hours, because I believe in you, and I know you can.  I know that if you start doing these simple things, it will lead to harder things.  It will lead to learning, and it will lead to life making more sense to you.  I will wait until you are ready to show the world what you know.  I will wait.

Jump up a level to the world of education, to the politics, to the funding issues, to real life.  Yeah, here’s the part I’m probably going to piss some people off.  It doesn’t take much to realize that education is being bashed.  I am being held to the standards of “No Child Left Behind” and “teacher accountability” and everything else.  My pay has been hijacked by people who know nothing about what I do.  They say because my kids aren’t reading and writing and doing math at grade level that I am ineffective.  Working with this challenging population is suicidal to my career and livelihood.  Yes, I see miracles, and yes, I have some parents (certainly not all) who think I am the best thing that ever happened to their child.  But none of that matters.  According to the news, and the crazies in charge of education, I am lazy.  My knowledge and training mean nothing.  A good politically designed curriculum and an uncertified minimum wage teacher could do just as well.  And they are pushing hard for that.  Very hard.  And through billions of dollars in propaganda, they’re winning that battle, both politically and socially.

I still cannot believe I have done this.  I am not this type of person, or so I thought.  Hmm, but I guess I am.  I’ve become a political activist.  I am the crazy lady that approaches you at your kid’s soccer game about signing a petition to get something on the ballot to increase education funding.  I have protested.  I have taken my son out of school to teach him about appropriate civil disobedience.  He has protested.  He has marched in an Occupy movement with me and his dad, carrying a sign in support of his school.  Did I mention that my state typically falls between 45 – 50th in per pupil funding of the 50 states?  Did I mention the district where I live (and he goes to school) is ranked 172 of 178 districts in the state for per-pupil funding?  Although I work in a district outside of where I live, when the recession hit, I took a pay cut for 3 years starting in 2008.  I still have not “made up” that loss.  Of course, some will say I got a raise when they reinstated my 2007 pay. Hmmm.

So in the midst of all of this, I had a really really awful day yesterday.  Our kids, according to our district, don’t deserve adequate teacher and para-educator coverage when somebody is ill or has a training.  Well, they will hire a substitute for the teacher, but they pay so little, that nobody shows up, as in this case.  Para-educators, forget it.  Make do.  Figure it out, they say.  Yesterday, that meant that we were short 3 of 6 adults in our classroom (wow, the germs have hit early this year, and it never fails the kids get sick one week, and the adults the next).  As a result, we couldn’t maintain our structures and routines.  As a result, the kids had a confusing day. Confusion is never good.  It leads to panic and behaviors kids wouldn’t demonstrate in their typical structured environment.  In addition to that, we had a student who has been having a really hard time both at home and school lately.  Long story short, I got bit, badly, as in I had to leave and go see a doctor.  In 18 years, that’s never happened to me before.

Deep down inside my leg, it hurts terribly, but on the surface, I have about a 6 inch round circle that I can’t feel at all.  Nearly my whole calf is swollen.  Luckily, most of my flesh is still there.

I complain about my job a lot, the cowardice that is politics, the money grubbers out to make money off of for-profit charters and privatizing, the folks who want to pretend that my students…. my kids…. don’t exist, the people who pretend that complex problems have simple answers, the people who take support away from my students, the people who think me ineffective.  And you know what?  For 18 years, it’s been a complaint, it’s been a source of my political activism, a source of my defiance in the face of it all.  But then yesterday happened, and even though I was able to go in today and not hold a grudge, to show my best face, and to love this child through her troubles, I am angry.  This political system is putting my kids in danger.  I am liable for the safety of these kids, staff or no staff.  It is putting my career in danger.  It is putting my physical health in danger.  And I can’t begin to tell you how much I love this work, but for the first time, I think I am seriously questioning if this is worth it.  And I know that’s what “they” want.  They want me to quit, for the public education system to be starved into failure, because we can’t afford to hire staff, because we can’t afford substitutes, because we can’t afford to support kids with special needs, because we can’t even afford enough staff to keep kids safe.

Will this setback become further political defiance for me?  Will I give up?  I don’t know yet. Can I go back full time in this climate?  Certainly not.

And then we get back to privilege.  You know what?  My kids were not born with privilege.  My families struggle immensely under the struggles of autism, the costs associated with therapies, the marital strains, the frequent health problems that co-occur with autism.  They need somebody to care.  They need good teachers, SLPs, and community members to stand up for them. If I don’t continue to do this work, who will?  Because people leave in droves every year, and each year, new and less experienced people come in, burn out immediately, and leave.  And not just in autism, but in any high needs population.  Does anybody care?  Is anybody listening?  Can this message be heard above the propaganda?  Does anybody care that our “great society” is not adequately educating our kids (and not just in the world of autism)?

And I’ve got my health challenges to look out for.  Do I give up my  ability to get my medications? (yeah, even when I got health insurance through my work, the out of pocket costs and work and attorneys needed to get things covered were out of this world… by the way, attorneys are very helpful and not necessarily as expensive as you think, especially compared to a big medical bill).  Do I continue on this increased cost of living without any consequential pay raise?  What happens to me when I can’t afford to take care of my health?

I think I need to be done ranting now.  Should I even post this?  <sigh>

Love to you all, and I hope that your lives are secure, and you can get the medications and therapies you need, and you’re able to manage your lives and health with dignity.  I hope that you are loved and supported in this challenging place we call life.

 

 

 

The Paleo Doc – Appointment Two

I had my second appointment with the Paleo doc (technically a physician’s assistant).  She went over my adrenal test results.  I’m in Stage 1 Adrenal Fatigue, which turns out to not be fatigue at all.  In the early stages, your adrenals are cranking out stuff big time.  At 2 of my 4 measurements, I was very high, at one I was moderately high, and 1 I was normal.  Interestingly, the time of day I tend to be most tuckered out (3:00 – 5:00 PM) I have NORMAL cortisol levels.  That can’t be good, but it also probably explains why I’m not sleeping well.

The Plan:

  • Supplements (magnesium, vitamin d, vitamin b complex, vitamin c)
  • Gaia herbs
  • Phosphatidylserine
  • Go back to AIP Paleo, but make sure I’m getting plenty of carbs
  • Mild/moderate exercise
  • Meditate at least 10 minutes per day

She wants me to add these things in one at a time with the Gaia herbs last as they are most likely to cause trouble with autoimmune conditions.  She wants to see me again in 2 months to see how I’m doing.  I’m going on vacation tomorrow, so AIP will have to wait until I get back.  I think I will try to implement magnesium, vitamin d (both of which I’ve used off an on before) and the b complex while on vacation, then get the others when I get home.

Hope everybody is having a stellar summer.  Oh hey, did I mention I got a message from Everyday Health and they want to do a story on Paleo?  Ha!  We’ll see if it happens.  Very exciting!  Take care!

 

RA – Thyroid Update

Ok, for those of you following my craziness, this may be repetitive.  For those who lurk once in a while, here’s the scoop. For 3 years, I had my RA in remission with use of exercise, Paleo, and decreasing medications (down to only 1/2 dose Enbrel).  For the last 18 months or so, however, I’ve been having thyroid issues.  I have Grave’s Disease (hyperthyroid), and my thyroid was radiated and killed off in 2007.  I will have to take supplements for the rest of my life because of this.  Up until April, I was taking levothyroxine or Synthroid (brand name) only for this.

Despite my thyroid issues, I was having the best inflammation markers ever (on 2/20/14: 0.7 CRP with 0 – 1.0 normal and 17 SED with 0 – 20 normal).  Still, I felt like my RA wasn’t as happy.  After 12 months of thyroid issues, my thyroid got really unhappy, and my T3 dropped significantly.  Now, if I understand this correctly, my levothyroxine/Synthroid is predominantly a T4 medication.  My body’s tissues will convert T4 to T3, which is the more active form that makes me feel normal.  For whatever reason, my body was not converting T4 to T3.  My symptoms?  Heavy long periods, insomnia, dry skin, weight gain, fatigue, feeling really cold all the time, my RA got more active (no longer in remission and sometimes inflammation markers elevated), etc…  I went back to the endocrinologist, who I hadn’t seen in several years.  Here’s the story with the numbers.

From the rheumatologist on 12/30/14:

  • TSH 0.81 (0.34 – 5.60)
  • TOTAL T3 32 (60 – 181)
  • FREE T4 1.73 (0.89 – 1.76)
  • CRP 17.3 (0 – 10) inflammation marker
  • SED 31 (0 – 20) inflammation marker

I hadn’t seen all of these results, but was told them over the phone.  I thought I only had 1 elevated inflammation marker, but they both were elevated.  I decided I needed to go back to the endocrinologist.  The endo started me on a T3 supplement.

From the rheumatologist and endocrinologist on 3/26/15:

  • TSH 0.22 (0.34 – 5.60)
  • TOTAL T3 54 (60 – 181)
  • FREE T4 1.66 (0.89 – 1.76)
  • CRP 9.8 (0 – 10) inflammation marker
  • SED 27 (0 – 20) inflammation marker

As a result, we decreased my T4 (levothyroxine/Synthroid) medication, as my TSH got too low.  TSH gets lower when your body thinks it has too much thyroid hormone, yet that’s not what the tests show.  Go figure.

Part of the test results from the paleo doc on 5/21/2015.  Please note test variations in what is normal:

  • T3 Uptake 41 (30 – 39)
  • Thyroid Oeroxidase Autoab 2.2 (0.0 – 9.0)
  • Reverse T3 22.4 (9.0 – 27.0)
  • CRP 13.1 (< 3.01) inflammation marker
  • SED 19 (1 – 20) inflammation marker

Results from 6/15/15 from the endocrinologist:

  • TSH 0.41 (0.34 – 5.60)
  • TOTAL T3 62 (60 – 181)
  • FREE T4 1.49 (0.89 – 1.76)

Changes from today are to lower T4 (levothyroxine/Synthroid) another level and increase T3. I am still very symptomatic of low T3, but interestingly having a couple of high thyroid symptoms too.  I’m hoping to get my T3 a little more solidly in the normal range to see if I feel better.  My T4 has room to come down still, and my T3 room to go up.  I am also having an ultrasound done of my thyroid as I have a small lump in my neck.  I’m hoping it’s nothing, but it’s been going on for about 3 months, so it’ll be good to have it checked out.  After feeling my neck, the doc said he didn’t feel like I had any thyroid tissue left, but he couldn’t account for this lump, and he didn’t feel a lymph node there, despite thinking that’s probable.

I just got access to most (maybe all) of my records from my rheumy and endo back to 2011.  It’s interesting to see the results on paper, as typically I get a phone report.  I’m realizing that the numbers are not always accurately dictated over the phone, and some numbers were not what I thought I was told (unclear if it was not given to me correctly or if I wrote them down incorrectly).  It appears that the SED rate is the same test between both the hospital (rheumy and endo are in the same hospital) and paleo doc (different facility).  I am encouraged that the SED rate seems to be coming down as my T3 goes back up.  With the CRP, it’s hard to tell.  It seems all over the place, but part of that seems to be that it’s a different test.

I’m doing my adrenal function test today.  I will FedEx it tomorrow and should have results in a couple of weeks.  Maybe that will tell me something.  The endo did mention that it’s possible that I have developed Hashimoto’s Thyroid Disease in addition to Grave’s, making me both hyper and hypo despite not having a thyroid anymore.  My dad, brother, uncle, and grandmother all have Hashimoto’s, so this would make sense, although part of me likes to think I’d be invincible to such things due to following Paleo.  It’s possible it’s been there a long time, as my thyroid numbers have historically been really hard to control. I’m thinking that might be what the paleo doc is looking into also. I’m feeling a lot more hopeful and like another remission could be just a few months away.