About CavansMom

I've had RA for 15 years. This is my experiment with the Paleo Diet, to see if it could improve my RA.

Recipe – Turkey Pepperoni Pesto Roll Ups

I invented this a few years ago, but never made a post for it.  Today, we made it with basil (for the pesto) and lettuce (for the wraps) from the garden.

One of our many basil plants.  This one is growing in a pot with some flowers on the porch.

One of our many basil plants. This one is growing in a pot with some flowers on the porch.

 

Recipe:

Place a turkey slice flat on a plate.  Place a pepperoni slice flat on top of the turkey slice.  Place some lettuce or a few spinach leaves on top of that.  Add a glob of pesto.  Roll up and poke with a toothpick to keep in place.  See photos below.

My pesto.  It's pretty chunky.  I didn't exactly follow the linked recipe.

My pesto. It’s pretty chunky. I didn’t exactly follow the linked recipe.

DSC07792 (2) DSC07793 (2)

 

Recipe – Tuna with lettuces and scallions

I’ve greatly expanded my gardening space this year, and today, for the first time ever, I picked a scallion (green onion).  Most of my lettuces are bolting (turning to seed from the heat…. the leaves get smaller and more bitter).   I’m still eating them though.  My recipe:

  • Can of tuna, drained (I use tuna in water)
  • Mayonnaise (I use Chosen Foods Avocado Oil Mayo)*
  • Scallions, sliced

Mix together tuna with appropriate amount of mayo and sliced scallions to taste.

Scallion/green onion from my garden

Scallion/green onion from my garden

  • Loose lead lettuce (keep it simple and grab a bag of salad)
  • Handful of pecans
  • Handful of berries (I like blueberries or blackberries, but raspberries and sliced strawberries work as well).
Lettuces from my garden

Lettuces from my garden

 

Tuna salad

Tuna salad

 

* I had been getting Chosen Foods Avocado Oil Mayo from Costco, but it is no longer available at my Costco.  I had to order it through Amazon, but it was very expensive.  Looking for other places where I can find it cheaper.

 

 

 

Paleo & Rheumatoid Arthritis – Gardening

Admittedly, I am a crazy person.  The further I get into this Paleo world (over 5 years as of this post), the more paranoid I become about Big Business trying to poison us all.  I heard the other day that 80% of foods in the US listed as organic are not organic, and that most come from China which is heavily polluted with things like arsenic.  AGH!  We do not eat all organic, but I do buy organic when the price is reasonable and we can afford it.  I’ll be pissed if I’m not getting what I pay for.

If you do reading on the state of the world’s food supply, you’ll hear things like we’ve only got 30 – 60 years of top soil left before we can’t grow crops here anymore.  You also hear about the chemicals, like Monsanto’s Roundup, that are poisoning us all.  I live in a farming community with farmland on the south side of my house.  In the summer, the crop duster comes around 5:00 AM spraying nastiness that makes us all wheeze.

Then, of course, there are some theories that the reason we’re all getting autoimmune diseases is that our soils (and therefore the foods we eat) are depleted of nutrients and/or loaded with chemicals.

Remember when I said I was crazy? Ok, so then I think about how far our food travels (like from Chile or China), and how the way we raise animals to eat is both inhumane and destroying the planet.  That’s starting to keep me up at night.  On top of that, Colorado has a significant lack of water problem (on top of being in the high plains desert, the oil and gas industry takes most of our water for fracking).  We don’t even have the rights to water that falls from the sky in our yards in Colorado. They just passed a law last year that now allows us to keep two 55 gallon drums of water from rain.  That’s not much.  Scary, huh?  That starts creating scares not just about water security, but food security as well.  Colorado has an ever shrinking agricultural economy.

I started thinking about all of this, and thinking it is completely wasteful to be watering a lawn in my yard, when I could grow food and at least recoop that water in food that I eat.  When we moved into our house in 2003, we made a few garden beds in our back yard, which I have used every year.  This year, with my new found craziness, we expanded our endeavors with 5 new 4 foot x 4 foot wood square planters, 4 for food, and 1 for compost.  So, here’s what I’ve got in pictures so far.  Most of these were taken on June 7th, so still very early in the season.

4 foot by 4 foot square box garden with strings every 1 foot.  10 foot pvc pipes criss crossed to allow shade cloth (in this case, burlap) or plastic to make it like a greenhouse and extend the growing period.  This picture, taken June 7th, has lettuce (has already had at least a dozen salads from it), broccoli, carrots, and scallions.

4 foot by 4 foot square box garden with strings every 1 foot. 10 foot pvc pipes criss crossed to allow shade cloth (in this case, burlap) or plastic to make it like a greenhouse and extend the growing period. This picture, taken June 7th, has lettuce (has already had at least a dozen salads from it), broccoli, carrots, and scallions.

 

 

 This box contains lettuces, cauliflower, tomatoes (not ideal, as they get too big), and kale.

This box contains lettuces, cauliflower, tomatoes (not ideal, as they get too big), and kale.

 

 

This box, with the exception of the PVC pipe was a kit from a company called Greene's.  It is not as deep as the others, which we built from scratch.  It contains sweet potatoes, a pepper, strawberries, and some seeds (carrots and scallions) that haven't come up yet.

This box, with the exception of the PVC pipe was a kit from a company called Greene’s. It is not as deep as the others, which we built from scratch. It contains sweet potatoes, a pepper, strawberries, and some seeds (carrots and scallions) that haven’t come up yet.

 

Not ideal for large plants, this box has 1 cucumber and 1 cantaloupe.  We did not break it up into 1 foot sections as these will be long vines and will outgrow the box.

Not ideal for large plants, this box has 1 cucumber and 1 cantaloupe. We did not break it up into 1 foot sections as these will be long vines and will outgrow the box.

 This is one of our old beds from 2003/4.  The white flowers are arugula that came up from last year and is already going to seed.  There is a broccoli plant with yellow flower (close) that was also a surprise from last year.  Planted among all of that mess is kale and collard greens.  Kale is wonderful baked into chips.  We also juice kale and collard greens.

This is one of our old beds from 2003/4. The white flowers are arugula that came up from last year and is already going to seed. There is a broccoli plant with yellow flower (close) that was also a surprise from last year. Planted among all of that mess is kale and collard greens. Kale is wonderful baked into chips. We also juice kale and collard greens.

 

This used to be my son's garden, but he hadn't planted anything the last 2 years, so my husband took it over.  There is a new apple tree planted to the left.  I don't know what all he has planted in that bed.  In the back fence corner, there is a large rose bush.

This used to be my son’s garden, but he hadn’t planted anything the last 2 years, so my husband took it over. There is a new apple tree planted to the left. I don’t know what all he has planted in that bed. In the back fence corner, there is a large rose bush.

 

This is one end of a very long bed.  You can see sage, chives, and oregano.  In the mulch, you can see the shives have spread, as has the arugula from 15 feet away.  There are pumpkins, zucchinis, and yellow squashes planted in here also (behind these plants).

This is one end of a very long bed. You can see sage, chives, and oregano. In the mulch, you can see the chives have spread, as has the arugula from 15 feet away. There are pumpkins, zucchinis, and yellow squashes planted in here also (behind these plants).

 

Pots interspersed with flowers, basil, and rosemary (basil and rosemary are annuals in Colorado, so must be replanted every year).

Pots interspersed with flowers, basil, and rosemary (basil and rosemary are annuals in Colorado, so must be replanted every year).  The bottom pot is my lemon tree, which almost died before it got warm enough to go back outside after a long winter under grow lights.

 

My orange tree is getting buds.  Maybe I'll get some oranges.  I've had the tree for 3 years and have gotten a total of 4 oranges.

My orange tree is getting buds. Maybe I’ll get some oranges. I’ve had the tree for 3 years and have gotten a total of 4 oranges.

There’s a lot more going on in the yard than this.  It looks pretty messy, but I don’t care.  I do eventually want to kill off the grass, so we won’t have to mow.  We are composting everything we can get our hands on, so you’ll see cardboard on the ground in some of the pictures.  Very little is going to waste in our house, but I’ll save that for another post.

 

 

 

 

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

RF-IgM

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

RF-IgA

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

Rf-IgG

  • 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.

 

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?