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.