Keep Moving

The last few weeks have been very challenging and very sobering for me.  And caused me to seek out some help and start digging for even more information than ever before on the subject of healing through food.

What happened is right about the time I completed my post on being 60 days compliant, my body went into a downward spiral of flaring. Horrible, painful flaring.  Everyday seemed to get worse.  It was like an all out war on my joints.  My husband and I were at a complete loss as to why this was happening.

Nothing had changed in my diet.  I had actually become stricter with what I was eating.  For example, rice is non-AIP compliant, but some folks can eventually eat it with no problem.  I had re-introduced rice in February, with no apparent side effects.  But since I was still have a few flares, I decided to take it back out.  The same with eggs (even organic hormone free).  I decided to wait until I was "flare free" to reintroduce anymore of the "gray area" foods. 

So we could not connect this change to anything I was eating.  My stress level had not changed, I had been sleeping fine (two things that by themselves can cause flares).  But I was suddenly in more pain than I have ever been.  And there was no relief.

At this point, I was taking more than the recommended dose of Ibuprofen every day, which is not AIP compliant (it's very damaging to your gut).  But if I was to function at all in life, I had no choice.  I've always been annoyed by some of those commercials that show people taking one Ibuprofen for their "arthritis" and then go off to play tennis or go bike riding.  I had to take three times the dosage just to get the edge off so I could get in and out of a chair.  Tennis was definitely out of the question.

I had a regular appointment scheduled with my rheumatologist on March 10th and I was so looking forward to going in and bragging to her about how good I felt without meds, etc.  I was even hoping that a follow up appointment would not be necessary.  But, instead, I walked in there with stiff swollen joints and moving like I was 100 years old.  She suggested, if I didn't want to go back on the biologic drugs (remember that I have tried Humira, Enbrel and Orencia so far with their lovely side effects) then she could prescribe a low dose of Sulfasalazine (an antibiotic drug used on RA patients with the theory that it can be caused by an underlying infection as well as leaky gut) or Hydroxychloroquine (a drug used for malaria patients but also used for RA or Lupus).  The rheumatologist said it was my choice, but that she thought it was a good idea to take something until the flares were under control. She also reminded me that long term flaring can eventually cause damage to the joints, something I have been able to avoid so far.

Even with the pain I was having, I told her I would rather still try to get through this naturally.  She was supportive and just told me to call or email her if I changed my mind.

That night was the worst flare I'd ever had.  Every one of my fingers felt like I had jammed them, my wrists were swollen and painful and I could barely move my shoulders.  My knees, hips and elbows were tender to the touch and the tops of my feet (I didn't even know joints were there) hurt like crazy.  Taking a shower was almost comical, trying to figure out how to wash my hair when I could not lift my arms (because of the shoulder flares) or move my fingers.  Getting in and out of bed was also interesting.  You don't realize how you depend on your joints or take them for granted until it's painful to move them. 

When I got up the next morning (after not sleeping well at all from the pain) I told Tony I could not go on like this.  I couldn't figure out what was going on with my body, but I needed some relief.  I believed I was on the right track with food, but I needed to be able to function, too.  I emailed my rheumatologist and asked her for a prescription for the low dose of Sulfasalazine.  Of the two she suggested, this one had the fewer side effects. 

And then I cried because this was just not what I wanted, to be back on meds.  Any meds.  And then I got on Facebook to one of my closed groups of a community of others trying to heal with nutrition alone and asked if anyone else was having the same problem.  Off of meds, feeling pretty good and then about a million steps backwards.

This is what I found out.  Going off meds prior to healing was never a good idea.  It takes several months for this nutritional protocol to reset your biology and begin the rebuilding process (molecule by molecule).  And then your body must begin healing the damage that has already been done.

Here is what Eileen Laird (someone who has her RA under control through food) responded to me and to others who responded to my post:

"Hi everyone. I'm Phoenix Helix, the autoimmune blogger with RA and an intimate knowledge of pain. Please don't go off your pain medication without your doctor's advice.  You're mistaken on Sarah's position on NSAIDs and the AIP  
(note from Helen: this is in response to someone stating that The Paleo Mom forbids NSAIDS or Ibuprofen on the AIP protocol). I understand why you are because it's on her blog list as being forbidden, but that's for people who use it intermittently for mildly annoying pain, not people who are prescribed NSAIDs by their doctor to treat the severe pain of RA and other inflammatory AI diseases. Every medication for autoimmune disease, including immunosupressants, NSAIDs, steroids, digestive discomfort meds, etc., contribute to leaky gut, and Sarah details this in her book. That's why we all want to go off them, but as Helen experienced, it's a mistake to go off medication cold-turkey before healing has had a chance to take place. Terry Wahls, Paul Jaminet and Sarah Ballantyne all warn against this. Here's a quote from the Paleo Approach book: “Changing, tapering, or discontinuing your medication – especially if you are taking prescription drugs, but also any daily over-the-counter medication that your doctor may have recommended – should, without exception, be done under the supervision of a health care professional. I must also emphasize that changing your medication is not, in most cases, something to tackle when you initially adopt the Paleo Approach. By improving your diet and addressing lifestyle factors first, you will be able to heal your body as much as you can while you are still taking these drugs, which will significantly help you adjust to discontinuing them.
Helen Gonzales, what I think has happened is that your body is rebounding after having been on immunosuppressant medication. The AIP can take many months to achieve healing, and by removing your meds and supplements, you unintentionally set off an inflammatory cascade in your body. The pain flares have your stress hormones off the chart, and they cause leaky gut and exacerbate AI symptoms. Basically your pain is causing your more pain. Try not to be too disappointed that you need meds - it's not forever. You just need to give yourself time to heal, and it can be discouraging when you hear the overnight success stories and you're not one of them. But most people heal slowly over years, not over a couple of weeks. Needless to say, the advice I gave to XXXX in my first paragraph also applies to you. Don't stop relieving your pain. I firmly believe that excruciating pain is a far bigger roadblock to healing than the meds that relieve it. When the pain goes down, that's when it's time to start tapering your dose, not ahead of time. A good role is Terry Wahls, who continued taking her immunosuppressant medication for 6 months of seeing improvements before she started tapering her dose. As for her pain medication, she reduced it as her pain reduced, but still takes a small dose to manage the minor pain that remains. This is the woman who got out of a wheelchair! Taking the medication her body needed didn't interfere with that process. Wait until you no longer need them before attempting to go off your meds again, and next time, taper your dose. Cold turkey is never a good idea. "

Eileen's post made me feel so much better.  I felt like less of a failure and instead got some fresh hope.  I also downloaded Dr. Terry Wahls book on my Kindle.  Dr. Wahls was in a very advanced stage of Multiple Sclerosis and turned to nutrition for healing.  She went from being in a wheelchair to now being in remission.  In her book "The Wahls Protocol" (which is very similar to AIP) she emphasizes many times to remain on your medications until you are seeing signs of complete healing and then try to wean off of them gradually.  She even said "if you stop your treatment now, you could very likely have another relapse or worsen before you get better" discouraging you to go any further because you will think it's not working.

Since the meds I was taking were not being effective anyway, I just chose to stop them when I started AIP.  I thought I knew best with my whole "Look at me, I'm med free!" boasting. Now I can see that the smart thing to do would have been to switch meds (to something that WAS working) until I could give my body time to heal.

So I started on the Sulfasalazine oral antibiotic drug last week.  I also ordered a good multi-vitamin online  (organic and additive free) and started taking them, too.  My flares have already calmed down some.  The drugs are supposed to take 6-12 weeks to have any effect, so I don't think it's from them, unless my body responds more quickly.  Maybe the vitamins are helping or maybe God is just giving me a break for a time.  I was even able to go for a walk today, although at a fairly slow pace.  It's going to be awhile to get back to the point of doing 30 minute workouts on the elliptical a few days a week as I was doing last year.  But I know I will get there again and hopefully even more.

This experience was very humbling for me.  And a new awareness of how severe and devastating this disease is and not to be taken lightly.  And I feel sad thinking that my dad and my brother were in this much pain for such a long time.  I believe pain gives us a whole different perspective on life.  And it can make us very bitter, or cause us to rise above it.  I hope that I can choose to rise above it until it, hopefully, is gone for good.

I still believe that a nutritionally dense diet is a key to healing our bodies. And I'm confident I will eventually be able to taper off of these drugs.  But, I won't let my pride keep me from seeking help anymore when it's needed.

Moving forward once again.  Off to make a healthy juice from carrots, celery, ginger and an apple. :)

60 Days Down

Today is March 1st.   The month of March should bring thoughts of springtime.  But in my neck of the woods  - we are supposed to get yet another snowstorm!  This has been the longest. winter. ever.

Today is also my 60 day milestone following the autoimmune paleo protocol.

I am proud of the fact that I have not fallen off the wagon so far.  Sixty days of no dairy, no sugar, no gluten, no processed food, no pop, no bread, no junk food at all.  No coffee!  The only mistake I have made is by occasionally (and by accident sometimes) eaten a vegetable or fruit that was not organic.  And last night we had steak and decided not to get the grass fed, since this was a leaner steak.  I thought I would be ok since I've read that the grain the cows eat settles more in the fat.  Apparently that's not all true.  I won't go into details (thank me) but I will just say whatever they fed that cow did not digest well in me.

But here is my biggest fail over this last two months.  While I was feeling better overall - no digestion problems AT ALL! (well until last night) my RA was still flaring.  Painful frequent flares in my hands, wrists, elbows and shoulders.  Any kind of wrong twist, or overuse of one of these joints caused a flare.  And by overuse, I'm not talking about moving furniture or painting a house or anything like that.  No, I would flare from something like carrying a bag of groceries from the car to the house.  Or playing on the floor with my granddaughter.  One time I flared from lifting a pitcher of water from the refrigerator!

I kept telling myself that everyone heals at different paces, but I was still getting frustrated that after almost 60 days I was still in this much pain.  And after not cheating!  After all,  I might have been able to accept this delay of healing if I had gotten a doughnut or something out of it! So, I whined talked it over with my husband.  I was to the point that I was almost ready to go back on some meds for at least a period of time, because I was flaring almost daily with no relief.  I kept going over and over my diet, trying to figure out if something I had been eating was triggering this.  But there seemed to be no connection to any particular thing.  And I was trying to put some variety in my diet so I wasn't eating the same thing every day.  But then it dawned on me that there were some things I was ingesting every day - my vitamins!

Here comes the epic fail, "how can I be so stupid?" DOH!!! moment that happened on Tuesday of this week.  I pulled all of my vitamin bottles out of the fridge and started reading the ingredients again.  Mind you, I bought many of these at a health food store and the others from the organic section of other stores.  And I still read the labels carefully when I bought them (or so I thought) making sure there was no corn products, sugar, or soy products in them.  I thought that I was on to the sneaky way some manufacturers label their products by calling these things different names.  I had learned to read labels and avoid things like "maltodextrin" and "xanthan gum" (both corn based). I was actually getting a little smug thinking I was beating the manufacturers at their game with my vast knowledge.

 But then I pulled out the complete list I have from "The Paleo Mom" book with all the different names of ingredients derived from corn or soy and compared them against the labels on my vitamins.

There was corn products in all of them.  Every. Single. One.  Terms I somehow missed in my "vast knowledge" (insert high roll here) like cellulose, ascorbic acid, citric acid, calcium stearate, glycerin, hydrolyzed vegetable protein.  There was at least one ingredient in each of the supplements I was taking that was compromising my healing.  And, although I bought many of these in "organic" sections, they did not have the organic seal on them.  So heaven only knows where the corn came from that made these ingredients.  I might as well have plucked a chemical soaked ear of corn from a Monsanto field and eaten it raw right there.

Ok, maybe that's an exaggeration.  But needless to say, I tossed every one of those bottles of vitamins. I think a total of ten bottles of different supplements!  And in case I started thinking that that tiny bit of corn product in a tiny capsule could not have possibly caused by body to flare I'm documenting right here - I have not had one flare since Tuesday.  Four days.  This cannot be a coincidence.  And it helps to resolve more than ever to stick with what I'm doing.  I can't let myself get frustrated over the "waste" of these 60 days when I may have been symptom free by now.  It took me this long just to get used to eating this way.  But I have so much more hope now!!

One interesting thing I'd like to point out. When I was taking the biological drugs for my RA, I ate corn all the time.  Not just the local non-GMO farmers market corn either.  I would buy it canned, frozen, or order it at a restaurant with no idea of it's origin.  I also ate soy quite a bit - in soy sauce, Soy milk, tofu and many things containing MSG.  I also ate regular store bought chicken, beef, pork, etc.  In my opinion then, grass fed beef and free range chickens were for people we called "granolas". And while I always admired "granolas" and their convictions, I never felt the need to take things that extreme.  Although my digestion was always a little "messed up" when I was taking RA drugs, there was never flares triggered by any of these things.  And I always attributed the digestive issues to the drugs, not to the way I was eating.

But once I got off the drugs and once my "leaky gut" has started to heal, my body has gone crazy with "new" food sensitivities.  I have done some research on this, too, and apparently many of these sensitivities were always there, they were just masked by my immune suppressant drugs.  The pathogens were already in my system (through the leaky gut) and my body was attacking itself trying to get at these pathogens, thus the symptoms of RA.  The drugs were just suppressing those cells that were trying to attack my body. Now that I'm no longer on the drugs to suppress the attacks, they are going on the attack to go after those foods I can't be eating.  Which is why I'm still flaring when I eat them.  The more my gut heals, the less and less any pathogens will "leak" into my system and the less and less my body will have anything to attack.  Whew, I think I have that all right!  Science has never been my strong subject, so I have to keep going back to read how this all works!

The question is - why not stay on the drugs while the gut heals so at least I would be symptom free during the healing process?  While this actually might be a good decision for some people, I chose not to for several reasons.  One being that the current immune suppressant injection I was on wasn't working.  I was flaring anyway.  And every time I took a shot, I felt like I was injecting poison into my body.  I just felt "sick" all the time and the side effects of MS, cancer, respiratory diseases, etc. was getting too scary.  The other reason for me was that  I think I would have been too tempted to "occasionally" eat something off the protocol if I didn't have the major side effects when I did.  And it would have taken so much longer to heal that way.  My body has had almost 60 days to get used to no meds at all.  I really want to keep it that way.

I am off all of my supplements right now until I can order some that do not have any "hidden" ingredients in them.  One other change I'm making this next month is to purchase a good juicer and start drinking some organic juice every day.  I currently use my NutriBullet, which I love.  But it's better at making smoothies because you use all of the pulp.  I've learned that your body has to digest the pulp, taking it longer to get to the actual nutrients of the veggies/fruits you are drinking.  By juicing, the nutrients absorb into your body faster (as long as you don't eat right before or after you juice).  Tony and I are researching juicers right now! :)

There is no doubt that buying organic and grass fed is expensive.  And I am struggling with the feeling that I am being self indulgent and just all around "precious" with this way of eating.  But I keep telling myself that I am investing into my health and my life and what better thing to invest in than those things??  And when my gut heals, I may be able to indulge a little and eat more straight Paleo which allows for some things that are not allowed on the autoimmune Paleo. 

So there is my 60 day summary.  Be back in 90 days for another update!