Rheumatoid Arthritis – So Much Going On!!

Well, I’ve been quite bad about blogging, so I thought I should put something out today, as I have some time. 

I did something crazy the last year.  I went back to work full time.  I’ve been working part time for about 12 – 13 years, but some odd circumstances made it clear it was time for a job change.  It was actually a significant pay cut hourly, but going part time to full time has definitely helped our financial situation. I was worried my body couldn’t do it.  I thought it could, but there’s always that self doubt.  Well, I made it through in one piece.  My RA is a bit more active.  I’ve been taking a bit more Enbrel (I was down to 1/4 dose or less, now more like half to occasionally full dose).  Stress and lack of time got me eating less nutritionally, but still following the big rules (no grains, no legumes, occasional cheats with dairy that have not been kind).  Sweetened caffeinated tea made its way in, and I’m trying (since school is out for summer) to get unaddicted.  Gosh, I’m tired!  All exercise was thrown out the window, and I’ve gotten very wimpy.  Got to work on that starting this week.  Weight has been creeping back on for sure.

On top of full time work, I took an 8 month Permaculture course (1 full weekend per month).  This was fascinating and is making me rethink all of my gardening techniques.  Our back yard is in year 1 of a probably 3 year renovation to incorporate Permaculture principles and maximize healthy food output.  Permaculture has a variety of great principles, but what I take away is it’s how to make nature work for you with as little work as possible to maintain it.  For this year, we moved all of our working garden beds (annuals) closer to the porch so that there is easy access to them (more likely to go and pick my favorite foods, if they’re right off the porch).  Further out in the yard we will have perennials and fruit trees, things we don’t need to plant every year and just need to harvest once or a few times.  Makes sense, right?  Keep things further out we don’t need to get to as often.  That’s more of year two.  We also got baby chicks 3 weeks ago.  In addition to giving us eggs at some point, they eat bugs, mow my lawn, give me fertilizer, and are generally kind of cute.  Well, except Minerva. I’ll tell you about Minerva later. 

Hopefully I’ll be able to post more and do some videos on this Permaculture thing.  Paleo drove me here.  We’ll see where it goes.

I hope you all are well!  Take care!

RA – I’ve Been Outta the Loop

I’ve not been making blog posts lately and thought I should give a big update.

Life here has been quite crazy.  After about 13 year of being part-time, I went back to work full-time.  I did this for a few reasons.

  • My job of 17 years wanted me to go back to work full time.
  • I was growing increasingly unhappy there.
  • Due to increasing traffic, my once 25 minute each way commute had turned into 50+ minutes each way.

So, rather than going back to work full time where I had been, I took a closer job (12 minute commute) for A LOT less money than I would be making had I stayed where I was full time.  This has brought about its own stress, as it’s new people, new stress, and a lot less resources and time to do the same work I had been doing at my old job.  In this new position, there is a unique sense of being needed, as my skills are hard to find, and they’ve been looking for somebody with my expertise for 3 years.

I should also mention I’ve started a class in Permaculture, which takes up one full weekend per month.

So, here’s what I’ve learned in relationship to my RA and this new lifestyle. 


It is a relief to have more money.  We’ve been putting off some much needed home repairs because of lack of funds.  This helps a lot. 

The commute is much better and I’m way less stressed about being late due to crazy traffic.  I have more time than I would have had if I stayed where I was.

It feels good to know that I can do full time work.  I’ve been trusting in that for a long time, but also fearing it, as half-time work makes it much easier on my body.

My husband has stepped up with doing more of the grocery shopping.  My son has stepped up with packing his own lunches and unloading the dishwasher daily.


I’m tired at the end of the day and week.  I don’t have much to give my husband or son.  I zone out after work.

Part of me misses my commute.  I miss long opportunities to listen to podcasts and audiobooks.

I am feeling very stressed, and my body is reacting poorly to it.  I’ve had some mini-flare-ups that seem to be quite correlated to stress.  I’ve been hyper-aware that I don’t cope well with stress.  I’ve been taking more Enbrel. It is hard to make doctor’s appointments with this schedule.  It is hard to find time to cook Paleo meals.  Consequently, I’ve been eating “less clean” which also contributes to the mini-flare ups.


With all of that said, I have this whole week off.  I’m cooking a bunch of Paleo meals to freeze today (soup, meatballs, and later chicken).  More to come on this topic as the year progresses.  I hope you all are well!

RA- Diagnostic Test Results

I am a supporter of RA research.  I’ve been in at least 4 studies (excluding online ones).  The last two were from the same group, one in 2011 (pre-Paleo), and the other just a few weeks ago (March, 2017, having been Paleo for 5 years).  They did bloodwork, I assume as confirmation of my diagnosis.  Each time they did several tests, but only 4 of them overlapped.  I daresay that Paleo is making a big difference, as I am on a lot less medication now than I was in 2011.  These are the results of the 4 tests that overlapped:

Anti-CCP3.1 antibody (normal range less than 20 U/mL)

  • 2011 (Pre-Paleo): 401
  • 2017 (5 years Paleo): 261.7


  • 2011 (Pre-Paleo): Elevated
  • 2017 (5 years Paleo): Negative


  • 2011 (Pre-Paleo): Elevated
  • 2017 (5 years Paleo): Negative


  • 2011 (Pre-Paleo): Normal
  • 2017 (5 years Paleo): Negative

That’s got to be good, right?  I wonder how I can get that anti-CCP3.1 down!

My life with RA: The First 3 Years

Last month, I celebrated 20 years with rheumatoid arthritis.  Tomorrow I will celebrate 5 years of being Paleo.  I said I’d blog about it all, and it’s certainly been a while since I’ve posted, so here goes.  This is the first part of I don’t know how many on my life with RA.

The first 3 years:

I was pretty healthy.  I had had allergies and asthma pretty severely as a kid, but I moved from the east coast to Colorado in 1991 to go to college, and I appeared to have left most of my allergens behind.  No more allergy medicine, although mold and cats still seemed to get me.  Luckily, Colorado has a pretty dry climate.  I was 5 feet 4 inches and about 130 pounds.  I was quite strong.  I worked.  I went to school.  I lived a pretty normal college life, going to school, going out with friends, drinking a little too much.  I got my bachelors degree in the spring of 1995 and started on my masters that fall.

Around April of 1996, I started having unusual fatigue.  At the time, I was 23 years old. I was working at Target at 4:00 AM (yeah, AM) unloading freight from trucks, stocking the sales floor, and backstocking (as in climbing up 12 foot ladders carrying heavy boxes).  I was also working on my masters degree in speech-language pathology full time.  I was entitled to be tired.  This was an unusual tired though, and after a month or so, I went to the doctor.  I was extremely fortunate, as I had just acquired health insurance a month or so before symptoms started, after working at Target for 2+ years.

My doctor tested me and found out I was anemic.  I started eating more red meat and taking an iron supplement.  A month or two later, I was even more tired, so tired in fact, that I was sleeping a ton.  I struggled to find the energy to get out of bed, to work, to go to school.  Something was very wrong.  I went back to the doctor.  I can’t remember everything she tested me for, but I know mono was on the list, and I was negative for that.

I was taking summer classes, attempting to get a 6 semester masters done in 2 years.  I remember taking a class on research.  It was a 1 week class, 8 hours a day.  It was brutal.  I remember leaving the class one day, and a storm was coming and my feet were KILLING me.  It was unusual, as it was the tops of my feet.  I blamed bike riding and digging my toes into the bed at night.  I had recently gained the habit of sleeping on my stomach, which I had never done before.  That must have been it.  They hurt terribly though, and I had a hard time walking to my car.

The only family I had in the state were an aunt and uncle who lived in the city where I went to school.  On Friday nights, my uncle (and his friends) would always treat me to a meal at a bar/restaurant they had been going to on Friday nights for 20 years.  One of my uncle’s friends had been quite sick, bed-bound for several weeks with an unknown illness.  I missed her, as we frequently split a dessert.  Then, one Friday, she was back.  We had an interesting conversation about joint pain.  Since her illness, whenever she moved her joints in certain directions, she was having a sharp pain in her joint, which often radiated.  It was strange, as just recently I started noticing the same thing in myself.  I sorted boxes coming down the track off of the trucks at Target.  I took some boxes off and put them on pallets.  The rest I sorted and shoved down one of two other tracks.  If I shoved in just the right way, I had pain in my shoulders that radiated all the way down to my fingers.  It was wicked sharp, but would be gone fairly quick.  We had a few conversations over a few weeks about the similarities in our joint pains.  The difference was that hers got better eventually, and mine got worse.  Much much worse.

I went back to the doctor, and at that point, she sent me to a rheumatologist.  I took my aunt with me to the appointment.  She was a nurse, and I figured she would understand more than I would.  The rheumatologist ran more tests: mono, lyme, RA, lupus, parvovirus, thyroid.  Everything came back negative.  She said to come back in a few weeks, and they would run them again.  I did.  Everything was negative, but my lupus numbers were going up.  Back again in a few weeks.  My lupus numbers were now borderline for a diagnosis of lupus, but not definitive yet.  I was developing the lupus mask. The rheumatologist started preparing me for what we thought was inevitable.  In the meantime, I was sleeping 20-22 hours a day.  I was missing classes and work.  I would wake up and not know what day it was, when I last went to the bathroom, or the last time I ate.  Things were looking pretty ugly, but I took it day to day, and I can’t say I ever freaked out. 

By November, I was really a mess.  All of my joints were locking up.  Despite accommodations at work, I wasn’t able to do much work, and what I did do caused extreme pain.  I wasn’t on medication.  I decided to take an incomplete in one of my classes.  Lucky for me (and not so lucky for her), I had a professor who had lupus, and I think she made it so things worked out at school.  At Thanksgiving, my mom came out to take care of me.  I don’t think she really understood how challenging things had become.  She wanted to take me shopping with my aunt, and I remember telling her (once we got to the store) that I just wasn’t up for walking. I stayed in the car, which was also quite painful, wishing I was home sleeping through it all.

After my mom left, I continued to be a mess.  I remember one night lying on the couch watching tv.  Everything in my body locked up except my elbows.  I actually couldn’t move, and I had a thought that I could die right there in my apartment on the couch.  It was a very claustrophobic feeling, one I don’t ever wish to repeat.  I don’t remember how I finally got up.

In early December, I was back to the doctor’s.  This time I had a diagnosis.  My lupus numbers had dropped drastically, and my rheumatoid factor, seemingly out of nowhere, was positive.  I had rheumatoid arthritis.  And you know what?  I was elated!  Finally, after 8 months, I had a diagnosis!

I went home and called my mom, speaking at 100 miles per hour, telling her it finally had a name.  I had rheumatoid arthritis.  She said, “you’re on prednisone, aren’t you?”  I said I was, I had just gotten a prescription for it.  She said she could tell.  It always did make me hyper (throwback to childhood asthma pre-inhaler days).  I gained 40 pounds in the first 2 months after starting prednisone.  I was excited I wasn’t going to die.  My parents did not share my enthusiasm for my new diagnosis.  My mom’s grandmother had RA.  It had been severe.  She was wheelchair bound.  My mom didn’t like going to see her because she cried all the time.

For Christmas, I hopped on a plane back home.  I always went home for Christmas, but that year, my mom insisted on taking me for a second opinion on my diagnosis, wanting me to have anything other than RA.  Despite the prednisone, the plane ride was excruciating.  After flying all day, I did my best to walk as normal as possible and put on a good face getting off the plane.  I doubt I was very successful at hiding how awful I felt.  When we got to my parent’s house, I faked taking some extra time looking at Christmas decorations, as I knew I couldn’t walk up the stairs.  I didn’t want them to know that, so I sent them on ahead, and I scooted up on my butt.  I didn’t want the drama of the reaction.

Over the break, we went to Pittsburgh, Pennsylvania to a supposed (according to my mom) top notch rheumatologist.  It was a 6 hour drive, again excruciating, but at least it didn’t end with a trip up a set of stairs.  The doctor reviewed my tests and agreed with the diagnosis.  He told my mom there were a lot of new treatments for RA, and that my life didn’t have to be like her grandmother’s.  That helped to decrease the drama, but what I realized later was that it was kind of a lie.  It was still a lie I was glad he gave my mom.  He also noted that I had never had the chicken pox (apparently they tested me for that somewhere).  He recommended I get the new vaccine that had recently come out (bummer for me I scheduled an appointment for Spring Break to get the shot and broke out in pox 3 days before the appointment, age 24).  6 hour drive home…ugh.

Back in Colorado, I had my eyes examined before starting Hydroxychloroquine.  The Pittsburgh doctor’s “lots of more treatments” were only two.  Hydroxychloroquine and Methotrexate.  I think I started the medication around January, 1997, along with some prescription pain killers so I could sleep comfortably and trials of several prescription NSAIDS, before I found one that didn’t hurt my stomach.  I was still taking prednisone in increasing doses.  I also took an educational leave of absence from my job, as I had to complete 2 internships, both basically full time jobs, working spring semester in an elementary school (hence the Spring Break chicken pox) and summer semester in a nursing home.  The educational leave of absence allowed me to continue getting health insurance, but I had to pay out of pocket (not nearly as expensive as now….I think I paid about $130/month, and it was REALLY good health insurance.  I owe Target a lot for that.  I owe United Healthcare a lot for that too.  I continue to be a faithful shopper of Target for that reason).  I finished up my incomplete from the previous semester and managed to graduate on time in July, 1997.

In August, I moved to the Denver metro area and started my big new professional job as a speech-language pathologist.  I was working for a state-run agency in a school designed for kids with special needs. The pay was awful.  I would have earned more working full time at Target.  The health insurance, Cigna, was deplorable.  Where United Healthcare had covered my doctors and medications, Cigna covered almost nothing. I literally had to study the state law to get them to cover anything, and I even hired an attorney once (the attorney was cheaper than my medication).

My RA was still a bit of a mess.  I had tried some dietary things during this year, the biggest was vegan, which lasted 2-3 months I think.  By January of 1998, my rheumatologist thought I should add methotrexate, probably my biggest regret.  I started it and dutifully went for all of my liver function tests.  The dose got increased a few times (from 4 pills to 6 to 8 per week).  I felt green every time I took them.  During the 14 months I was on methotrexate, I got sick constantly.  Mostly I got strep… over and over and over.  It got to the point that the doctors wanted me on low dose antibiotics all the time. I started following the creation of Enbrel, the first biologic to hit the market.  I followed the clinical trials and saw that it was doing well and likely about to come on the market.  I talked to my rheumatologist about it, and she hadn’t heard of it yet. But pretty quickly, she became extremely knowledgeable.

In March of 1999, over Spring Break I got really really sick.  I woke up not knowing what day it was (later finding it was only Saturday, the first day of Spring Break).  I took a shower and fell getting out.  I wasn’t clear if I had passed out or just fell.  I called my uncle to take me to the ER (first ER trip since second grade broken finger).  At the ER, given my history, they checked my liver function.  It was a little off.  They asked me if I was good about doing my liver tests and what my numbers had been.  I told them I always did them, and that they were normal (I didn’t know the numbers, the doc only told me I was ok…. ALWAYS KNOW YOUR NUMBERS).  I had strep again with a 103 fever.  The doc didn’t seem to believe I didn’t drink (I used to, but hadn’t touched a drop since methotrexate.  I thought my rheumatologist was going to make me swear on a Bible on that point and not getting pregnant).  Anyway, the ER doc insisted that I had to alternate large doses of ibuprofen and Tylenol to get my fever down.  I argued that I knew I wasn’t supposed to do that with the methotrexate.  He insisted that it was imperative that I did.  I stayed with my aunt and uncle that week.  I had no sense of balance.  I couldn’t walk without falling over.  I couldn’t eat, and if my aunt hadn’t forced the issue, I wouldn’t have had anything to drink either.  I couldn’t get my fever below 102.  On Monday, I followed up with my regular doctor as ordered by the ER doc.  She was alarmed at my condition.  She retested my liver, and ran some other tests.  She sent me home with my aunt.  I suspect she would have sent me to the hospital if my aunt wasn’t a nurse.  The tests took a long time to come back.  You know when you have 2 doctors calling you on the weekend, that things aren’t good.  The tests indicated I also had a virus, probably the flu, in addition to strep.  My liver function was also really really really bad on all 7 liver tests.  The doctors ordered that I stop ALL medications (all 5 of my RA medications and the Tylenol and ibuprofen). I will tell you that liver failure is nothing to mess around with.  I never felt so awful in my life, and I actually worried that I was going to die.  I couldn’t sit up.  If I blinked, I lost all orientation.  I was pukey.  I was sick for all of Spring Break and well beyond.  I missed a lot of work after Spring Break and went back to work on a modified schedule.  Not fun for your first “professional” job.

After I got over being sick, I decided not to go back on most of my meds. Even after being off of everything for a couple of months, I didn’t feel any worse, although I still felt pretty awful. I think I went back on prednisone and an NSAID, and I think that was it.

My hands and feet were pretty gnarly looking, even before going off meds.  My knuckles at the base of my fingers were blackish and the side of marbles, particularly the ones below my index and middle fingers.  My feet were also pretty bad.

In the fall of 1999, my rheumatologist recommended I give Enbrel a try.  Had I not gone through the whole liver failure thing, I probably would have been thrilled to give it a try.  I had closely followed the clinical trials for a while.  Given everything that had happened, I was very scared to be one of the first people to go on this medication (it went on the market in November of 1998).  At that time, the creator of the medication, Immunex, was a small organization and Enbrel was their only drug.  It was hard to make, and they could only make a limited supply, so you had to register to see if you could get on it. It was around $1,200 per month.  I was actively talking myself out of it when my rheumatologist suggested hand and foot x rays.  If they looked bad, she highly recommended I try Enbrel.  Well, they looked horrible.  There were 3 spots in each of my wrists that had little to no joint space.  There were cracks in the ends of all of my bones, and some of my toes looked broken according to the radiologist’s report.  In addition to that, my ligaments had been sliding off their spots on my middle fingers causing horrible pain and an inability to straighten my fingers.  I was a little shy of 3 years since my diagnosis.  I decided to try Enbrel.

As I recall, getting the Enbrel was no easy task.  Pharmacies didn’t keep it in stock, as it was too expensive if nobody bought it.  They didn’t even want to order it.  I probably called 20 pharmacies before I found one who would.  Insurance didn’t want to cover it because of the expense (my rheumatologist argued my failure on hydroxy and metho, and I was rapidly heading toward multiple joint replacements if it didn’t work, and that’s how insurance covered it).  Apparently there was supposed to be some kind of training, as it was injectable.  The pharmacy insisted it was the doctor’s office, and the doctor insisted it was the pharmacy.  In the end, I read the instructions and kept my aunt, the nurse, on the phone while I did the first one.  And you know what? It was a MIRACLE!  Within 3 hours, there was a visible difference in the size of my hands, and I was alternating feet on the stairs, which I hadn’t been able to do in a long time.  The Enbrel didn’t put me in remission, but pretty close.  With some physical and occupational therapy, I was able to start walking better (I had painful bursitis in my hips from walking funny because of the RA in my feet).  I got my tendons back in the right spots on my middle fingers.  It took about a year, but I got off prednisone.  I was in a pretty good place.

Lots more to come, but that’s enough for today.  Love to you all who are going through these similar struggles.


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.


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


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.



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.

DSC05852 (2)

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.

RA – Paleo Doctor?

So, for well over a year I’ve been thinking about seeing a functional medicine practitioner.  The one I found last fall looked great and was all about Paleo, but then she raised her rates to over $800 just for the first visit (no testing, as I’m sure would come up, was included in that price).  I put the whole thing on hold for a while.

In the meantime, my thyroid (specifically T3) has gone all crazy, which seems to have made my RA more active, and one of my two inflammation markers has been slightly elevated for the first time since going Paleo 3 years ago.  Or is it that my inflammation has gone crazy and made my T3 nutso? The endocrinologist thinks it’s the latter, but then she also said she has no idea why this is happening or how to fix it other than to add a T3 medication.  Ugh.  I’ve been feeling like my thyroid was off for well over a year, but the inflammation marker only went up 4 months ago.  I don’t know.  Maybe it doesn’t matter.

Did I ever mention that my husband has a biology degree from Johns Hopkins?  Although he decided to not go into medicine, he’s retained all that knowledge well, and is probably the most intelligent well-educated person I know, brilliant, in fact.  And he’s not a fan of alternative medicine.  Double that when insurance won’t cover it.  Still, I highly value his opinion, and he has seen what Paleo has done for me (and him), and he can’t argue that (and doesn’t).  When I bring these alternative things up, he’s much more supportive of them than before we went Paleo.  He’s still not totally on board though.

So I’ve decided that I really want to pursue the functional medicine piece.  My understanding is that they look at you much more as a total, not as a list of diseases.  Let’s face it.  Modern medicine sees me as a list of diseases, and it’s easily understood when I say that I have or have had a primary care doctor, an optometrist, opthamologist, dentist, oral surgeon, allergist, occupational therapist, certified hand therapist (yeah, they’re different than an OT), physical therapist, hand surgeon (he probably had a more sophisticated name than that, but I’ve forgotten), orthopedist (different than the hand surgeon, but same clinic), dermatologist, gastroenterologist, podiatrist, endocrinologist, and oh yeah, rheumatologist. Wow.  That’s 16. That’s embarrassing.  I didn’t even include things like pediatrician, cancer specialist (wow, that was an overblown drama as a kid…. no I didn’t have it <phew>), ER docs (3 of those I think… anaphylactic shock, miscarriage, and liver failure), boob squish technicians,  Xray technicians, radiologists, MRI technicians, CT technician, ultrasound technicians, OB-GYN etc…  OMG, this is mortifying when I list it all out.  This is seriously upsetting me! 

Ok, going back to my first list of 16, the ONLY ones that don’t necessarily relate to inflammation (for me) are my primary care physician and optometrist.  I NEED AN INFLAMMATION DOCTOR.  You can’t tell me that my gum inflammation isn’t related to my RA and Grave’s Disease and Thyroid Eye Disease and Asthma and Allergies, and weird freaky rashes, and (twice) a complete inability to poop for more than 30 days!  Why can’t all of these doctors get together and help me decrease my inflammation?  I strongly believe (and there’s certainly lots of scientific data to support) that all of this inflammation is related.  Why don’t all of these doctors of inflammation get together and have a little chat?  Because they don’t, and to think otherwise is insanity.  Really, there’s no good reason.

Last week, I called and had a free 15 minute phone consult with a registered dietician/functional medicine practitioner/Chinese medicine expert. Although she said a lot of good things (she’s heavy into food sensitivity testing), I decided to sit on the decision for a week, as I just wasn’t quite sure she was the one worthy of all of my out-of-pocket expenses.  By this week, I was less excited, as I want somebody more into Paleo expertise (she was neutral about it), into more than just food sensitivity (although I do think this could be a help, it’s not a primary focus for me), more into neurotransmitter status, and more knowledgeable about nutritional deficiencies. 

So, I went back to Google and started looking again.  I hadn’t looked at the Paleo Physicians Network recently (yeah, isn’t that cool?)  Lo and behold, there was a medical doctor with Paleo expertise (he was into Paleo before it was called Paleo). He also does functional medicine.  He had an online video talking about several things I want to learn more about.  He’s hired a Paleo Nutritionist to work in his clinic.  I made an appointment and go in 2 weeks.  And my health insurance just might cover it. I hope.  We’ll see.  Think happy thoughts, as I need to start getting on track again.  Despite modern medicine’s best efforts, I’m not getting there.  I still think Paleo is the right path, but I need some tweaks.

Rheumatoid Arthritis – An Experiment in Fasting

So, I had a weird thing happen yesterday.  I had the most exhausting day at work, came home, took off my shoes, and felt like I had a splinter on the bottom of my right big toe.  I couldn’t find anything though, so I just went on with my evening.  A few hours later, my whole right leg (foot, angle, knee) was in extreme pain, and my foot was very very swollen.  I could barely put any weight on it, so sat on the couch, keeping it elevated.  I suspected that I had been walking funny since my toe hurt.  I don’t know about you all, but I can adapt to pains like that without even thinking about it.  Even changing shoes can cause a flare up my leg by slightly changing the way I walk.  See this post.

I went to bed fearing I would wake up a mess and have to miss work.  I guess in a way, I was hoping for that to happen, as Monday and Tuesday were REALLY exhausting days at work. Sometimes you just need a break.  Anyway, I woke up and my leg was normal, but the bottom of my big toe hurt pretty bad.  The skin hurt, not the joint. It isn’t warm.  It doesn’t look injured.  It’s just really really swollen and sore on the bottom.  It’s so swollen that it’s changing how I walk.  I took a shower, woke my husband, and asked him to look at it.  I was debating staying home, knowing that my whole leg would swell if I was walking weird on it all day.

In the end, I decided to make it to work.  I only work 4 hours on Wednesdays, and I know my coworkers would really need me if Wednesday was anything like Monday or Tuesday (thankfully, it was a much better day).  To get through the day, I decided to try something I used to do quite frequently, but not much at all in the last 10 years.  I decided to fast.  Sometimes when my body hurt and nothing else worked, fasting helped.  Today, I did it more as a test.  I didn’t take any pain medication (no ibuprofen, etc…)  I did drink water, and I did take my thyroid medication. Other than that, I didn’t eat anything from about 6:00 Tuesday night until 4:30 Wednesday afternoon, almost, but not quite 24 hours. 

So, what happened?  Well, I made it through the work day.  My right ankle swelled and hurt a little, but not nearly as bad as Tuesday night.  I even made it to the grocery store after work, something my husband insisted I not do after seeing my foot Tuesday night.  I was very tired, although I’m not sure that was related to the fast.  It was the sleepy kind of tried, not the lack of energy kind of tired.  I took a nap for a little over an hour when I got home.  Amazingly, I wasn’t hungry, and I didn’t get the shakes until about 4:00 PM.  Then I was absolutely starving.  I think I have Paleo to thank for the not being starving all day long.  I’m no longer the sugar addict I used to be.  This was reassurance that my hunger cycles are very different now than they used to be.  I suspect I could have gone longer had the afternoon not been crazy.  My son has a huge project on Abraham Lincoln due on Friday, and it has to get done by tonight, as he has a baseball game tomorrow.  Sometimes, it’s like pulling teeth to get a 9 year old to get his butt moving on such a big project.  He was needing constant supervision and encouragement to keep going on the project.  I soon realized how irritated I was getting with him and how hungry I was becoming.  I wonder if I would have done better if our evening had been more relaxed.  This was not the case though, and I suddenly went from feeling fine to feeling very stressed.

So, how did I break my fast?  I made myself a shake minus the greens.  Probably not my best choice.  I was already hungry and cranky.  After the shake, I was still hungry, cranky, and cold!  2 hours later, I’m sitting here eating some plain turkey we made in the crockpot Sunday night.  I’m feeling pretty normal.  My foot is not bugging me much, but the skin on the bottom of my big toe is still very sore.  I may need to see the doctor about it, as it seems very unusual, and I have no idea what’s wrong with it.

Next time, if I can get some less-stressful days, I may try for a 2 day fast.  Supposedly fasting helps reset your immune system, and I heard something recently that a 2-4 days fast can do really good things.  http://www.eurekalert.org/pub_releases/2014-06/uosc-fts060214.php