The Cure for RA: Just Like Heaven, Try MGMT Instead

There are many effective ways to manage RA, but as far as a cure? I am afraid that with regard to RA, The Cure is still only a British band from the 80′s

There is no cure for RA and by cure I mean, medicine has yet to find one universal method that completely eliminates RA. True, some of will be lucky enough to go into long-term remission, but for most of us, RA will be something we manage daily for the rest of our lives.

As much as I have tried to will myself to be cured, I accept that just ain’t gonna happen….yet. Try as I might, the RA always finds an “in” to hamstring me. Many are the days when I have felt young and vibrant only to be taken out by a body-wide whopper of a flare.

I have begrudgingly come to accept that for me, rheumatoid arthritis is about management rather than a total elimination of the disease itself.  While some days the thought that I will be dealing with this for the rest of my life is depressing, the thought and possibility of management is usually hopeful.  Management is a lot like keeping a budget.  My healthy diet (including supplements) and lifestyle (exercise, relaxation, sleep) are what I deposit into the account while my emotions, hectic lifestyle, less than ideal food choices, and lack of sleep are the withdrawals.  As long as I am depositing more than I am withdrawing, then I can maintain a pretty good quality of life.  However, living within my means is difficult, so sometimes I will “float a check” and hope that I can make a large enough of a “deposit” to avoid a painful RA-type penalty.  Sometimes it works, sometimes….not so much.

It is unfortunate that the marketing terms “therapy,” “treatment,” “remedy,” “healing,” etc. are used interchangeably with “cure” rather than “management” when speaking of rheumatoid arthritis.  There is no cure, but if you look there are numerous products and programs on the web that are described as one or more of the terms synonymous with cure.  This is very misleading, not to mention damaging to effective unconventional treatments (see, there I go using that word).  The reality is, there are good, effective treatments that can help to manage RA, but none of them can cure it (except in rare cases, but the jury is still out on that).

Management is the closest thing we have to a cure and that is not such a bad thing.  Sure, it’s not the perfect cure that we would all like, but with the right management most of us can maintain a high quality of life.    When management is the goal rather than cure, a whole new world of hope and possibility open up and a fresh perspective alone can do wonders for one’s health. =)

I couldn’t talk about two bands and only include one of them…. so here is MGMT.  If you are over 30 and have never watched a(n) MGMT video, you should, they are a lot like the incoherent videos of the ’80s, just with better technology.  Hello.

Pills, Pills, Pills: A Post About Supplements

I really have taken my supplements for granted over the years, and who could blame me?  There have been times when I was taking 40 – 60 pills per day! That is enough to turn anyone off pills, even supplements.  I choked them down with water (and soda) for years until I discovered that drinking fruit smoothies helps them to go down easiest.  So now, I drink smoothies like 3 times a day.  They taste pretty good, even better when I don’t have to make them ;) (thanks family). 

The great thing about smoothies are that they are super healthy if you use fruit and a little protein (I think hemp and pea are best, and I avoid whey at all costs…..but that’s another blog post altogether.)  It’s easy to start adding sugar and fat to smoothies (think yogurt, milk, protein powders, honey, etc.) which quickly erodes their nutritional value.  In fact, most conventional recipes include ingredients that simply negate the benefits of drinking smoothies. For a healthy person, they may be ok, but not for us.  Our nutritional needs are a bit different.  I personally only include fruits, veggies, a small amount of flax-seed and hemp protein in most of my smoothies. The fruit makes it sweet enough, and the flax and protein helps it stick to my bones.  I don’t need to eat as much throughout the day because my smoothies are enough to keep me going.  Mind you, I am no athlete, nor am I a tall person, so I really don’t need a lot to eat and feel healthy.  Anyway, this post isn’t about smoothies so let me get to it already…..

Supplements!!!

I don’t care what the big-pharma funded sources say, supplements are good and they do work.  You just need to be selective in the supplements you use because they aren’t all made the same.  Loose regulation of vitamins makes consumer knowledge imperative when purchasing.  Companies can and do make false or misleading claims about what their products can and will do.  They can add all sorts of fillers and ingredients that they don’t necessarily need to disclose and they aren’t always very honest about the effectiveness, purity, or origination of their active ingredients.  Conditions are improving, but the market is so huge that navigating it can be overwhelming.  How do you know what is good and what is crap?  Well, first and foremost, it is up to us to arm ourselves with as much information as possible so that we can make the absolute best decisions with regard to our health.  And, don’t allow the “loose regulation” talk stop you from trying supplements. Remember, the FDA regulates and approves all sorts of things that aren’t fit for human consumption. Any way you slice it, we as consumers and patients are pretty much on our own in the healthcare and wellness minefield.  However, there is hope! Education is the best defense from those snake-oil and kidney-killing-pharmaceutical mines. =)

Perhaps in my next life I will be a doctor, but unfortunately I think that boat has sailed for me this time around.  That said, please know that my information is just that: information.  I cannot and do not claim that anything I say will effectively treat or cure anyone and I do suggest that you talk with your healthcare professional about any supplements you take, especially if you are already taking prescriptions.  Supplements don’t always mix well with prescription drugs for some reason (lol)….once in a while their combination can cause death, so be sure to find out all you can before adding supplements to your daily cocktail of pills.  Even though they come in the shapes of Fred Flintstone and Barney Rubble, vitamins aren’t candy, and should not be taken lightly. 

Whole foods are best, sure, but with autoimmune disease, your gut usually isn’t working to its potential, so your body needs the extra help supplements should give. 

My Favorite Vitamin Brands

If you have been following my blog, you know that I am partial to Metagenics brand supplements.  It may have a bit to do with the fact that it is the brand that I am prescribed in the study that I am in, but in all fairness, I have taken a lot of different supplements by a lot of different brands.  It’s true.  I was once a regular at our local Vitamin Shoppe; the employees all knew me by first name. I have also tried Kirkland, Centrum, GNC, Trader Joe’s and most of the brands carried by Super Supplements and of course, The Vitamin Shoppe, and I can safely say that none of those brands came close to the difference I have felt while taking Metagenics brand.  I do not make any money by saying this, nor do I receive any kind of incentive to promote Metagenics, it is just my honest experience.  That is not to say that the others aren’t any good.  Anything that is free of fillers and that makes a physical difference in the way you feel is good.  I should mention as well that Metagenics aren’t your typical supplements you buy at the store, you should, in most cases have them prescribed by a doctor or dietician.  Metagenics are nutraceuticals; they tend to be made with higher grade ingredients than average.

Another favorite is Douglas Labs.  Their products are very similar to Metagenics and I have noticed that when Metagenics is unavailable for whatever reason, it is the brand my doctor will turn to next. Maybe it’s a commission thing that my doctor has with Douglas, but I am not terribly worried about that because I feel the difference when I take the products he prescribes.  If you do not believe me, then I highly recommend trying a round of your store brand vitamin for three months and then switching to Metagenics or Douglas for three months and feel the difference for yourself =).

Poppin’ Pills: My Daily Pill Fix

Currently I take….

My favorites, my anti-inflammatory/anti-pain pills:

  • 2  Metagenics Inflavanoid Intensive Care 3 x day
  • 1 Metagenics Kaprex 3 x day
  • 1 “magic pill” 2 x day (sorry, it’s currently in development, but it is the best defense in pill-form I have against pain)
  • 2 scoops Metagenics Ultra-InflammX Powder 2 x day

My others that help a lot too…

  • 1 Metagenics EPA-DHA (AKA fish oil) 2 x day
  • 1 Metagenics D3 5000 (vitamin D) 1 x day
  • 1 – 2 Metagenics Metagest (digestive enzymes) 3 x day
  • 1 Metagenics Metazyme (digestive enzyme) 3 x day
  • 1 Fortify (probiotic) 2 x day (I buy it fresh and keep it in the door of my freezer where it won’t freeze, but stay fresh.  Nothing more wasteful than buying “dead” prorbiotic).
  • 1 Metagenics EstroFactors (hormonal balance) 3 x day
  • 1 Metagenics Thyrosal (thyroid support) 2 x day

Yes, that is a lot of pills, but to me it’s worth it. If I start to have problems with my stomach, kidneys or liver, I will reconsider the number of pills I am taking, but I have been taking a large quantity of (high quality) supplements for years (under the supervision of a doctor) and have had no problems.  If anything, my health has improved. 

Remember when you are shopping or even when you are prescribed supplements, make sure to read all the ingredients.  Many brands, even the good ones, will include ingredients or derivatives of common allergens such as gluten, dairy, and soy depending on the supplements purpose.  Vitamin B-12 often contains gluten, so be careful all my gluten-free friends.  Avoid supps that contain many inactive ingredients, they are usually just fillers.  You get what you pay for in many cases, but not all.  Remember, knowledge is power! =)

Resources: 

Taking Back Monday: Drama-Free by Choice

“Today is the greatest
Day I’ve never known
Can’t wait for tomorrow
I might not have that long…”

–Smashing Pumpkins, “Today”

I love this song.  Yeah, it’s about drugs…I think.  Well, that is what my brother says.  I don’t really know.  What I do know is that regardless of what the song’s real meaning is, the chorus serves as a poignant reminder for me; for us all. 

Mondays: You Got to Love Them. 

We all have “those” days that seem to be generally more stressful  than others.    It’s not necessarily always Monday, it can be any day when things just don’t go as smoothly as they should.  They are usually days when we are at our most vulnerable; either coming out or just going into a flare.  The universe seems to use these days to test our resolve to see if maybe this time, we won’t succumb to the stress that we all know makes us sick… Maybe this time, we won’t need to be right, have the last word, or care deeply.  Maybe this time we can forgive the idiots and jerks that surround us and accept that they cannot help themselves.  Maybe this time we will forgive ourselves for simply being human….

Maybe, but not likely (LOL).  After all, we, the afflicted, who feel a little bit more than the average person, tend to have a more difficult time just letting things go….

(To all my Canadian readers, an ode to Mondays from The Kids in the Hall.<3)

I always know the universe has come to call when I wake up to texts from my ex…he seems to live for conflict and derision.  Anyway, I hadn’t heard from him in two months, and today is the best I have felt in the last two weeks, so of course today would be the day he texts.    Anyway, today, unlike so many other days in the past, I caught on to what was happening.  I saw that I was being tested, and rather than allowing myself to be swept down the path of stress, anger, and subsequent pain, I stopped and decided that today…..today,  I would choose which path I would take.  After all, today is only here for a limited time.  It is too short to squander it on people and things that don’t make a damn bit of difference. 

Life presents us with unpleasant people and situations all the time, but how we choose to receive them is entirely up to us.  I could have, like so many times in the past, played “toss the turd” with my ex.  I could have engaged in the foolish and petty back and forth, that changes nothing except the level of pain in my joints.  Power over my emotions  is power over this disease.  The last person I want at the control switch of my pain is my ex, or the inconsequential guy who cut me off on the freeway, or the bill collector, or my boss, or anybody else aside from my self. Today, along with tomorrow and the day after, and the next day will all be good days because I declare them all to be drama-free.  They may not all be ideal and sometimes there will be days where I will have a reason to feel angry or sad, but I will cross that bridge when I come to it. I will decide where my energy is invested.

Life is too short and our health is much too important to allow anyone or anything take our peace, our joy, and our day from us.  <3

It’s Not Personal, It’s Just Good Business Part II: Treating the Causes of Autoimmune Disease

I love Hondas.  They are all I have ever owned, and I would be quite happy if that is all I ever drove.  I purchased my first Honda when I was 20.  I was a single-mom, a full-time student at the University and a full-time employee at AT&T Wireless.  Needless to say, I thought I was pretty cool.  I didn’t have a lot of money, but my car looked good.  It was a blue Honda Civic and I loved it.  I drove that car all over and never had a problem but for one minor hiccup, it seemed to  leak oil for some reason.  I didn’t know why or how, all I knew is that the oil light came on a lot and an oil stain had appeared in my parking spot.  I took it to Grease Monkey for an oil change, and the tech said that he didn’t see a leak.  Great, I thought, there is no leak, so there is no problem.  I was relieved, except for the fact that the car still couldn’t hold onto oil for some reason.  So I am sure you are wondering why I didn’t take the car to a mechanic to find out what was causing the leak, huh?  Well, such is the way of the young and boneheaded;  why spend money I didn’t have on a problem that could be easily managed if I just kept an eye on the oil light and  simply added new oil when it came on? 

 That’s what I did for several months until the fateful day when my son and I were going to visit grandma two hours away in the middle of nowhere – Oak Harbor, Washington, and my timing chain broke.  Now, if I couldn’t afford to have an oil leak looked at, I sure as hell couldn’t afford to replace a timing chain.  The car was towed to the nearest garage and there the car sat for two months while I worked to come up with money to pay to have it repaired.  The garage saw me coming a mile away:  a young single-mom who knew nothing about cars but was dependent on one.  They could charge me anything they wanted to, and they did. 

This is a true story and I hope you can appreciate the foolishness of it all.  Rather than finding out the cause of the leak,  and fixing it once and for all, I instead just kept adding oil that just hid the fact that there was a growing problem with the car.   Ultimately, I was not able to ignore the problem forever and the result was a much bigger and more costly repair.  All I had to do was find the cause, and fix it – it was a no-brainer, right?…..

The health care system  is designed to prescribe drugs to stop or mask symptoms, and yet more drugs to mask or stop the conditions that crop up as a result of the original prescriptions.  Hardly ever is anything prescribed that actually goes after the causes of the disease in the first place.  They say that the cause is “unknown” but that isn’t entirely true.  One universal cause cannot be nailed down, but there are numerous known causes of autoimmune disease.  The kind of personalized care necessary to identify those individual causes is not currently available to most patients.  In fact, such care would require that the current “patient-on-a-conveyor-belt” system be overhauled.  Such changes are politically and economically unrealistic.  The system is overrun and the pharmaceutical industry is no less noble than the banking industry.  Therefore, it is up to us as patients to take responsibility for our own health.  We must learn all that we can so that we may make the best decisions with regard to our health.  We must make the system work for us.

We laugh at the stupid girl who didn’t get her oil leak fixed, but a car can be replaced.  Our bodies and the time we have on this earth  cannot….

It is important to understand that it is not just our joints being affected by our disease.  Many, if not all of the systems in the body are involved and therefore, should be  considered in treatment.  How many of you have just one condition?  JUST rheumatoid arthritis?  JUST fibro?  JUST whatever?  It’s always something AND something else.  Just like in a car, our systems work together to function properly.  When one area malfunctions (i.e. the immune system) the entire body is going to be affected.  Treatment resembles a “whack-a-mole” game; when symptoms present themselves, a drug is prescribed in the hopes that it will “whack” specific symptoms into submission.  Never mind why the symptoms presented in the first place and let’s not consider the toll the drugs take on the rest of the body because there is another drug to “whack” those symptoms into submission later.  When do we stop pouring oil into the engine and fix the leak?

Genes definitely play a causal role in the development of RA, but not entirely.  My paternal grandmother has rheumatoid arthritis, so you can say it runs in my family.  However, I also have 17 siblings, none of whom have rheumatoid arthritis.  I am the only one.  Yes, I received my grandmother’s legacy.  I AM special.  My point is that if autoimmune disease were genetically inevitable, all 18 of us would be suffering now, but we are not.  We may have the same genes that predispose us to rheumatoid arthritis but which genes are “turned on” and “off” vary from individual to individual.  More specifically, the variety, duration, and severity of stress on the body through diet (which accounts for up to 60% of the negative stress ),  chemical/hormonal differences, and environmental toxins greatly influence if and when genetically present diseases will arise.  This is why a traumatic event can often trigger the onset of a disease and perhaps why more women are afflicted than men…..

That should be enough to get your juices going…. There will be more tomorrow…..=)

Resources:

It’s Not Personal, It’s Just Good Business: Treatments and the Courage to Feel Better

I may not be on any prescription drugs for my rheumatoid arthritis, but that does not mean I don’t take pills (LOL).  I take a lot of pills, and I don’t even take as many pills now as I used to early on in my treatment!  When I started participating in the RA study, I was just able to take one pill at a time with a lot of water (ok, so it was really soda).  Now, as I am sure many of you can relate, I can take handfuls of pills at once with minimal water to wash it down. 

If you look closely you will see one prescription bottle there on the left.  That is Synthroid for Hashimoto’s thyroiditis, a common condition for those with not only gluten-sensitivity and celiac, but rheumatoid arthritis, as well.  I have tried to get away from the Synthroid, but my doctor says that it is a necessary evil, that in my particular case, pills are my best option.  By the way, this is the same doctor who has been treating me successfully for my rheumatoid arthritis without the use of pharmaceutical drugs. 

Reading the news or looking online, you will see that there is a lot of controversy over the efficacy of supplements.  I admit that over the years,  I have wondered whether all these pills were really making any difference.  Feeling foolish that I may just be taking a bunch of sugar pills (or worse), I have gone as far as half-kidding-half-demanding that my doctor level with me and tell me if my pills are the “real” stuff.  He has always assured me that they were, but to be quite honest, whether they are real or placebo, really doesn’t matter in the bigger scheme of things.  The fact that I feel better when I take them makes it all worth it, even if it is all just a part of the “placebo effect.”  I just don’t like looking like a clueless dork raving about magic pills that are actually just sugar.  I would just like to know that it IS in fact sugar that I am praising.

All joking aside, I do believe that my pills are straight, because I haven’t always been very good at taking them and I definitely feel a difference when I go without them for some time.  I hate taking them.  There are so many, and I would rather not be dependent on them, but,  you do what you need to do to feel better, and that is the point to my post. 

“It’s Just Good Business.”

Lord Cutler Beckett, Pirates of the Caribbean, At World’s End

Autoimmune disease is extremely complicated so it stands to reason that treatment is as well.  Unfortunately, our health care system is not set up with autoimmune disease in mind.  The current system is heavily influenced by pharmaceutical companies who have a business to run.  In many cases, we are lucky to have medicines that will keep us alive when otherwise we would die, but autoimmune disease is not generally a death sentence.  Drugs  may help patients with autoimmune disease, but they are not designed with consideration to the causes behind autoimmune disease, nor  for how the disease affects the entire body.  From a business stand-point, this is very smart.  By isolating a condition from the rest of the body and not treating the causes, they keep patients dependent on more and more of their drugs.  According to Wikivest.com, “The pharmaceutical market for arthritis generated $15.9 billion in revenues in 2008.”   Abbot Labs, makers of Humira  raked in $4.5 billion alone.  Not too shabby if you ask me.  Let me not forget all of us who invest in pharmaceutical companies to fund our retirement.  We would hate for anything bad to happen to our investment, so we must keep investing in their products.  After all, the industry is a very safe, albeit lucrative bet.  As long as there are sick people, there will be a market for drugs.  It is just all around good business.

I won’t say that the health care system is ideal or even ethical, but I am not opposed to drugs when they help.  I am however, opposed to keeping a closed mind about treatment options.  I am living proof that drugs are not the end all to treatment and that high quality nutraceutical supplements DO work, despite what drug company sponsored organizations will tell you.  There are many things (in addition to or instead of drugs)  that can help improve our condition, if we are open to trying them.  Attitude is everything.  You are much more likely to get favorable results when you believe in what you are doing.  If you believe the treatment will fail before you even begin, then it’s likely it will.  This is true for ANY treatment, pharm-based or not.

 I am not saying to go and stop taking your drugs, that is something you need to take up with your doctor, but I am saying that it could be possible to eventually go away from them or at the very least, reduce your dependence on them.  That is a possibility. Learn all that you can about your disease and don’t ever stop, even when you think you know it all.  There is always something more to know.  And, always consider your source and their agenda.  I cannot stress that enough.  In my research, the majority of information designed for rheumatoid arthritis patients is sponsored by at least one drug company.   That may be a harmless fact if all you want is information on symptoms of the disease.  However, if you are desperate for answers on different treatment options or have questions about diet, you must keep the agenda of the drug company in mind.  Remember, it is not personal, just good business.  There is no incentive to promote anything outside their products.  That could  hurt their bottom line.  That is not criticism, that’s is Econ. 101. 

Finding a combination of treatments that are right for you, with or without perscriptions, is tricky. It requires diligence, bravery, and patience, but it can be done.  We simply cannot give up or give in.  The quality of our lives depends on it….

I have a lot more to say on the subject of patient empowerment, so consider this the first in the series.  I will be supplying resources momentarily, but have run out of time for right now.  I welcome your comments and questions…..

Knowledge is Power: Resources for an Elimination Diet

In my last post I mentioned the elimination diet which is a method of testing for food allergies and sensitivities.  In this post, I present several sources for more information on conducting an elimination diet. 

It is a way of eating for three weeks that can help you isolate and identify foods that are potentially causing you a variety of health issues, including gastrointestinal problems, eczema, and our favorite, joint pain.  Ideally, you want to do this with the care and supervision of a registered dietician or doctor… It can be tricky and overwhelming if you do not know what you are doing.  Personally, I would especially not go it alone if you have colitis, crohn’s disease (IBD) or similar. 

I can help, but I am no doctor, so any of my information is just that: information.  It is not meant to cure or diagnose you; just arm you with knowlege.  Knowledge is power and the best treatment for autoimmune disease is a combination of knowledge, open-mindedness, tenacity, and an equally knowleageable, open-minded, supportive, and dedicated team of medical professionals.  Good luck and feel free to ask questions, I will do my best to answer or at least,  point you in the right direction.

Resources:

You can also contact the dietician I have been working with and who oversaw my own elimination diet, Michelle Babb.  She is very nice and extremely knowlegeable.  http://eatplaybe.com/about.htm

Falling Off the Milk Wagon: How I Went Dairy Free

Inflammed at Philadelphia Zoo

Recently I was asked to complete a “breaking the ice” survey where one of the questions was, “if you could have an endless supply of any food, what would it be?”  Despite all the changes I have made to my diet and all the progress I have made toward better health, the answer was still a no brainer……pizza and Pepsi, of course.  I figure, it would likely be near the end of all things anyway if I was limited to eating just one thing, so why not go hog-wild on cheesy, gluten-ous, fatty, goodness?  No, I don’t have the most sophisticated of palettes, but that is ok – I like what I like.

Pizza is versatile and good at any time of the day or night.  My favorite breakfast used to be cold pizza ….and Pepsi.  In fact, when it was just my son and I, we would go to  LittleCaesar’s Pizza (because it was cheap, not necessarily because it was my favorite) and pick up their two square pizzas special, and we would eat that for the week.  Later, when we lived in Philadelphia, I was in pizza and cheesteak heaven. It was great….(if not completely irresponsible), that was way back when we were both just kids …..oh, how the times have changed (lol)!

By far the best part of pizza is the cheese, and you can almost never have too much.  Cheese makes everything taste better.  I think it could even make a boot palatable!  I used to grate an entire block of Tillamook cheddar into my homemade macaroni and cheese sauce, and that did not include the mozzarella and asiago cheeses I added also.  I loved me some cheese!

Here in Seattle, the Nation of Islam used to sell their bean pies on certain corners of the city.  I haven’t seen them around for a long time (I wonder why, lol).  Their pies were so good that I decided I would recreate them.  Besides, NoI never wanted to sell to me.  I usually had to rely on friends who “looked more the part” to make the acquisition.  Anyway, after consuming enough pies to identify the flavors and looking through numerous recipes, I did it.  I not only duplicated that sucker, I made it better.  Let me just say, the secret to excellent bean pie is half and half.  Like cheese, half and half makes everything better. 

Now before you say, I don’t like anything “Islam” or “beans, ” let me just say, this post is not political, it is simply a poor glutton’s tribute to dairy.  And as for the beans, if you have never tried a bean pie, then you really have no idea what you are missing.  If you have had one and didn’t like it, then please don’t allow one crappy recipe to ruin it for you.  Seriously.  I will try and see if I still have my recipe and I will post it for you all to try.  I may have thrown it out, so as not to tempt myself into modifying it into a gluten free, dairy free version …. although, now that I think about it, I doubt it could be done well.

No one officially told me that I couldn’t eat dairy, it was something I had to figure out on my own and it took me a lot longer to cut it completely from my diet.  My RA was manageable, but unpredictable.  I never knew  what to expect  from one day to the next.  To complicate things, at the time, I was teaching in a classroom, and the stress alone took its toll on my joints.  Living with RA pain is already like living in a cage,  add the limitations of running a classroom to the mix and life was more flare than flair.  It was so hard to see past the pain to the children that needed me to be present on the other side.  If trying to mask and work through the pain wasn’t difficult enough, I had a constant ear infection that drove me nuts,  an acne rash all over my chin, and the dark circles under my eyes kept popping back up.  I had come really far with my RA even up to that point, and I felt so much better, at least in comparison to what I had felt before going gluten-free. It  wasn’t good enough though; my quality of life wasn’t acceptable.   It was at this point when I seriously considered going back to my rheumatologist and asking for prescriptions, although I hesitated only because I didn’t have any insurance.  I had left the RA study months prior for work and felt like I had hit a wall, like I had hit the limits of what Functional Medicine could do for me.

Out of desperation, I sought advice from an RA support group (I won’t name names, lol) where I was chastised for not being on pharmaceuticals already.  They told me that I would be crippled and wheel-chair bound within the year if I did not get onto some medication post haste (that was three years ago).  Sure, I will admit, their fear-mongering worried me, but I had come so far without the meds that I just wasn’t entirely convinced.  I called my doc from the RA study and was welcomed back with open arms…..

(My Dietician, Michelle Babb*)

My dietician (through the study) placed me on an elimination diet (www.everydiet.org/diet/elimination-diet)**  where I challenged several foods, including night shades, soy, eggs, dairy, and red meat.  All caused a reaction from headaches to stomach aches and everything else in between, but because of how the elimination diet is designed, I wasn’t certain that the foods really affected my RA, so it took a little longer for me to make the connection between the two.  When I eliminated dairy, my ear infections, chin, and eye circles cleared within days.  That alone was worth not eating it anymore, so I quit.  As an added bonus, I found that my rheumatoid arthritis did in fact improve as well.  Flares became increasingly predictable, and less severe.  I had not addressed the thought/emotion aspect of my disease, so I still flared as a result of self-inflicted stress. 

I am dairy-free 99% of the time, but fall off every now and then because I am human.  It’s not quite like gluten, I don’t have a violent, crippling reaction when I eat dairy.  In fact, the longer I go without it, the more tolerant I seem to become. For a long time after going dairy-free it would cause painful swelling if I slipped and ate it, but now, I can have a little bit and not suffer.  I miss my cheese and pie days, but I don’t miss the pain, or those awful infections.  Like gluten, dairy was an addiction and a comforting tool.  Once I overcame the addiction, I didn’t need or even necessarily want it any longer;  dairy isn’t healthy anyway.  Going dairy-free was not as traumatic for me as going gluten-free simply because I can once again enjoy a bite every once and awhile. The same cannot be said about gluten and me.

In my next post, I will be going further into how and why dairy made a difference in the severity of my rheumatoid arthritis and how it could possible do the same for you…..stay tuned! =)

*http://eatplaybe.com/default.asp

** I would have liked to use a more “credible” article, but I did NOT like WebMD’s “patients-are-idiots” approach and the Every Day Diets article seemed suitable enough for my needs. I will be writing more on elimination diets as well.

A Hands Off Sound Off: Avoiding Contact to Avoid RA Pain

Got a question that I am going to answer today. 

“How do you successfully act like you don’t have arthritis around people you don’t want knowing (i.e. going to church and not wanting to shake anyone’s hand because your hand feels horrible)?!!”

I don’t know if I am the best resource for this particular question because I have been told I kind of come off stuck up anyway, so I figure I am a natural at being unapproachable (LOL).  On the other hand, perhaps that makes me ideal at answering this question.  I guess we will find out…

I am not the most touchy feely person around.  I like my personal space and generally feel uncomfortable when people I don’t know well want a hug….  But worse is when people want to get physical while I am in pain….  I think David Spade said it best:  “No touchy!”

Avoiding the Dreaded Death Grip

When it comes to situations where physical contact is imminent, such as in church, I usually just won’t go.  It’s not worth the pain and it’s not like I don’t have a Bible at home.  BUT, I am not everyone, so if I HAVE to go, I will do a little pre-planning, since a painful handshake is not something I want to relive.   I will arrive late, or just as things are about to get started, and if I look like I am in a hurry or flustered (yes, even when I can’t move well), this has usually got me past the hand shake and greeting.  Also, I may look for a back or unmanned door through which to enter.  Scouting safe, contact routes is a good job for a healthy accomplice. 

I can’t imagine going anywhere to socialize if I am in too much pain to endure a handshake, but if I WERE to show up for church for pre-service socializing I may……

Link right arms with my husband and keep my left hand rested on his arm. Not only does this make my shaking hand unavailable, it makes my husband’s presence more dominant (just the rules of body language my friends), so if a hand shake or some kind of contact is coming, he will be my first line of defense.  Be sure and let your husband know of your intentions.  He may screw up at first, but give him some time to practice and he will be your best defense.  He could even come up with maneuvers that you never thought of to keep the paparazzi from bum-rushing you with hugs and handshakes.  You will begin to move and work in sync, sort of like Edward and Bella, or Whitney and her bodyguard, Kevin Costner (lol).

If a husband/partner who will run D for you is not an option, consider…..

Carrying a Big Stick….or cane, or something else to occupy your hands.  Hold a kid (yes, sometimes holding  a kid is better than a really firm handshake), a sweater,  your purse, etc.  Whatever you are able to manage that day to keep your arms busy and unavailable.   If you can’t close your hands, or tolerate any weight on your arms or hands, and are in that much pain, I would really reconsider going out at all. 

Avoid Eye Contact.  I really didn’t appreciate how disconcerting it is when someone doesn’t look at you in the face until the other day when I was speaking to a gentleman from a culture where eye contact was not always appropriate.  It is very off-putting in our culture.  If you avoid eye-contact, avoiding physical contact should be a piece of cake.  Heck, you could always move to that guy’s neck of the woods to avoid physical contact…. just a thought, lol. 

Stay Just Out of Reach.  Just like with eye contact, our culture has unspoken rules regarding physical distance.  Americans tend to need more physical space than other cultures.  As a general rule of thumb, stay about 4 feet or more away from those you don’t want to touch.   The greater the distance, the better.

Keep Your Head Down.  If everything else has failed and some clueless person is still pushing a hug on you, angle your body away from them and put your head down for a sideways hug.  I do this all the time, lol.  This protects your arms and hands, and does not allow the person to squeeze.  The only part of your body that may experience pain are your shoulders, but only if they squeeze hard.  You never have to hug back for any type of hug, especially if it causes pain.  That is the least you can do for yourself if you aren’t going to tell them straight up that you don’t want to be hugged.

Make Yourself Sick.  If you don’t want to go through the awkwardness of saying that you have RA, are in pain, and do not wish any contact, just simply say you are sick.  That word “sick” usually is enough to make people take a step back.  When presented with a handshake or some other form of contact, I will smile, nod my head once in friendly acknowledgement, and say, “oh, I am sick.”  If I can make a casual “stay away” kind of gesture with my hands, I will.  The point is to come off like you are protecting them, rather than yourself.  Most people won’t press further, but sometimes someone will ask what I am sick with and I just answer with a short statement, and then I will change the subject.  I will say something dismissively like, “I have rheumatoid arthritis.  Today I am in pain, but I will be OK”  I don’t want attention drawn to me, and people don’t tend to understand anyway, so I have found it just best to try to avoid the topic as much as possible. 

The bottom line is this:  do what you are most comfortable doing.  Don’t do anything you are not comfortable with.  You can’t worry about what others think.  You’re body is your own and no one has the right to touch you, not even your hands.  If people miss or don’t accept your subtle and polite messages about avoiding contact, then a more direct approach is appropriate.  Do not be afraid to communicate with others about not wanting to be touched.  It can be done in a polite, or even lightly humorous manner.  You can always tell them that you will give them a rain check for when you are feeling better. If they cannot understand that your choice is not a personal one, then perhaps you might consider rethinking the time you invest in that person. 

Keep in mind that hurt feelings heal much faster than joints affected with RA.   

Hope that helps ;)

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What We Think, We Become

“All that we are is the result of what we have thought. If a man speaks or acts with an evil thought, pain follows him. If a man speaks or acts with a pure thought, happiness follows him, like a shadow that never leaves him.”  –Buddha

“What we think, we become.”  –Buddha

 All of the major religions speak to the power of thought.  Just take the concept of faith if you do not believe me.   I chose Buddha’s words today simply because of their simple and direct message.  There is nothing to misinterpret; nothing extra to distract.  I like that…..

So, who have you become? 

Are your thoughts working for or against you?

My own experience has confirmed for me that attitude is everything.  Allow me to illustrate….

Facts Old Thought Responses New/Current Thought Responses
I have Rheumatoid Arthritis
  • Why me?
  • This isn’t fair
  • I can’t
  • I’ll never be able to….
  • This sucks
  • This will never pass
  • If only I had….
  • No one understands
  • Why bother?

 

  • Even if I don’t know it yet, there is a reason for everything. 
  • Adversity is an opportunity for increased wisdom and strength.
  • I can and I will, at my own pace
  • Change is the only sure thing in life
  • I can only control my own thoughts and actions. 
  • I am forgiven

 We are all given injustices, adversities, and hardships to deal with in life.  No one is immune.  It is how we choose to think about our situation that will either help or hinder us. 

When I focused on the injustice of my disease, I could not see any further than my own self pity.  My mind was shut to the possibility of there being reason and purpose behind my condition. And, make no mistake, there IS a reason AND a purpose behind it.  That’s true for all of us.  There is at least one major life lesson to be drawn from this.  Are you able to see your reason and purpose? 

As long as I felt like a victim, I was.  I allowed the disease to consume me, to define me.  As a result, I was sick all the time no matter what I ate or did to try and improve the situation. By believing myself cursed and victimized, I became a cursed victim.   The pain and disability validated my thinking, and the vicious circle ensued.   Let me not forget all the well-meaning people and institutions that fed into it as well.  We are naturally drawn to those people and institutions that validate our thoughts most.  They are like mirrors.  Do you like what you see?

When Enough is Enough

I like to think that there is a point we all reach when it all gets to be too much.  The pain is too much.  The side effects are too much.  The number of days lost to RA are too much.  We hit our limit and are desperate for change.  Yeah, I like to THINK everyone hits that pointthat, but I am learning , that this doesn’t happen for everyone.  My thoughts shape only my own reality, not the reality of others.  So, I can accept that we all have our own lives to live; our own paths to travel.  But for those of us who do or have reached that point of no return, how have our thoughts influenced the changes that we have or are about to make?  If you don’t think change or improvement is possible, why do you believe this?  What is keeping you from healing? 

There is always hope, always more than one way to skin a cat, if we choose to see the options before us.  Like Neo “saw” the Matrix, you must see the options you have. 

When you think you can’t, you are right.  You can’t.

When you think you will be sick forever.  You are right.  Your body will make sure to comply with every thought.

On the other hand, when you believe you can.  You will.  It may not be a fast process, and there may be set-backs, but that is ok.  The important thing is that you believe you can do it.  We cannot allow our culture to rush us along at a pace not of our own….

A Superhero’s Lament

When I accepted the power of my own thoughts, I became empowered over my own life and my health.  Sure there are some limitations to what and how I do things, but nothing I can’t find a way around.  In fact, a lot of things I thought I “couldn’t” do were actually things I didn’t really want to do anyway.  I don’t particularly like gardening, or mopping, or driving, but I have always felt that I must constantly be “doing” to be a good wife, a good mother; a good person.  It took me a very long time to accept that it is ok not to be Superwoman.  Our worth should not be measured by our domestic or multi-tasking capabilities.  It is ok, even good, to let someone else worry about the chores of life sometimes.  When I was able to finally “see” that not always “doing” was an option, I realized that RA actually gave me the reason and motivation I needed to stop running myself ragged with tasks I hated anyway.  Is it any surprise that my pain improved when I started being who I wanted to be rather that doing what I thought I needed to?  I do have the choice to be happy, and no, the world will not collapse if my house, children , and life aren’t perfect…:)

My doctor says that the Peggy Bundy-s  of the world aren’t the ones who get rheumatoid arthritis or fibromyalgia (or a whole host of other autoimmune diseases).  If you recall, Peggy spent her days on the couch, eating bonbons, completely indifferent to the drama that surrounded her.  No, we RA’ers/AI’ers are cut from an entirely different cloth.  We care very deeply about things; and are quick to internalize.  We tend to be considered “type-A” personalities.  We don’t tend to move slow or be laid back, in fact, we tend to be just the opposite.  Our personalities, and associated thoughts,  are both a blessing and a curse.  Our thoughts motivate us to do and be more, and they hamstring us when things don’t go our way.  They help us to be highly productive, yet we cannot separate the productivity from the naturally occurring stress that ultimately takes its toll on our bodies and  manifests itself as disease.  It’s a double-edged sword to be sure.  Because it is within our nature to be superheroes, it is even more important that we mind our thoughts….

So I ask again, are your thoughts working for you or against you? 

The Easiest Gluten-Free Bread Recipe Ever, and it Even Tastes Good

I found this recipe a couple of years ago on the Gluten-Free, Soy Free Vegan blog (http://glutenfreesoyfreevegan.wordpress.com/) which includes a collection of consistently good recipes.  Since trying it, I have done away with other gluten-free bread options altogether.  This recipe is by far the easiest for gluten-free bread I have ever tried, and it really is pretty good.  Your hands and wrists will be happy to know that there is no kneeding required, unlike your standard wheat-based breads!  You do not even need a bread maker for this -it would just make the job harder!  The other great thing about this recipe is that it is allergen-free and vegan, so in addition to being easy, it is likely the least inflammatory bread you’ll ever eat.  Below is the recipe from the GF, SF, Vegan site, along with some of my own notes thrown in,  Enjoy!

Makes 1 loaf

Note: Since there’s no gluten to get tough from over-mixing, you can mix until you’re confident.

In a large mixing bowl combine:

3/4 cup millet flour
1/4 cup teff flour or brown rice flour
1/2 cup sorghum flour
1/2 cup cornstarch (or double the potato starch if you can’t eat corn)
1/2 cup potato starch
1/2 cup tapioca flour
2 tsp xanthan gum
1/2 Tbsp salt
1/4 cup sugar (or sucanut or palm sugar to make it low(er) glycemic)
1 Tbsp active dry yeast (not rapid rise)

Add:

2 tsp olive oil
1 and 1/2 cups + 2 Tbs warm water (not hot)

Mix with electric mixer–using paddle attachment, NOT regular beaters or bread hook–for two minutes. The bread dough will be more like cake batter than traditional bread dough.

Two options for the rising:

For the best rising: While mixing the bread, create a proofing box from your microwave. Microwave a small mug or ramekin with water until the water boils. Leave the water in the microwave. Pour the bread dough into two non-stick or well-greased pans. Tuck the loaves into the microwave with the water—the container of water should not be touching the pans. (I have to remove the turntable in my microwave to do this.) Allow to rise until batter extends a bit over the top of the pans–generally 30-50 minutes.

Standard method: Pour into two non-stick or well-greased loaf pans, place on a warm surface (such as on top of the pre-heated oven), and cover with a towel. Allow to rise until batter extends a bit over the top of the pan–generally 50-70 minutes. (Batter should take up about half the loaf pan before rising.)

Bake at 400 degrees for 10 minutes. Remove loaf pans from oven and cover with aluminum foil. Return to oven and bake for an additional 35-45 minutes, depending on your oven. (Insert a toothpick or knife into the center to see if it comes out clean or doughy, if you aren’t sure when you pull out the bread.)

As with most breads, it is easiest to slice if you allow it to fully cool. But who can wait that long? I usually let it cool for a little bit, and then remove the loaves from the pans and place them on a rack to cool more while I slice it up. The bread tastes delicious warm, dipped in olive oil and herbs or spread with honey and ghee. It also works well for sandwiches after it has cooled. If you won’t be eating it within 2 days, after it’s cooled, slice it, wrap it in a couple of layers of plastic wrap, and freeze it. Never refrigerate this or other bread—it will get dry and hard if you do. If you leave the bread on the counter (wrapped), it will be good for all purposes for a couple of days. After that, it will be best used for bread pudding, French toast, croutons, etc.

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