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.  ❤

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

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? 

Carrying All That Baggage is Just Going to Make Your Hands Hurt Worse, Part 2: A List of Feelings

According to Karol Truman, author of Feelings Buried Alive, Never Die, feelings are associated with disease.  Below is her list of feelings that are related to arthritis and autoimmune disease:

Arthritis (in general)

  • Severely criticizing self of others
  • Holding onto feelings of hostility
  • Holding onto own opinions and beliefs
  • Long term tension or anger in life
  • Feelings of anxiety
  • Depression endured over long periods of time
  • Belief that it’s wrong to get angry which creates:
  • Repressed anger that “eats you up”
  • Need to be right
  • Rigid in thinking and feelings
  • Uncompromising attitude
  • Inflexibility

Rheumatoid Arthritis (specifically):

  • Body is receiving conflicting messages, like:
  • Laughing on the outside, but crying on the inside
  • Feels totally helpless in ability to change life’s burdens

Autoimmune (in general):

  • Laughing on the outside, but crying on the inside
  • Feels totally helpless
  • Have given up
  • Deep seeded/seated grief

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The Difference Between Pleasure and Pain: More on Food

Writing about thoughts and emotion is draining, so I am going to be continuing my series “Carrying All That Baggage is Just Going to Make Your Hands Hurt Worse:  The Role of Thought in RA” a little later. 

In the meantime, I have received a comment from a reader that I wanted to address more fully because I don’t think she is alone in her curiosity….

I was diagnosed with RA 9 years ago and it’s been a struggle for sure. I’m just now at a point in my life (turned 30 in June) where I’m reading things such as your post and realizing maybe it’s me….maybe I’m causing this pain to myself? I’ve never thought about becoming a vegan or going gluten-free, but after reading your success with it….it makes me curious. My problem is….I love food….I love flavor and it’s hard to pass on sweets! Not that I couldn’t do it….it would just be 30 years of one habit…changing. Can you give me an example of what a meal would be…being both vegan and gluten-free?

 I love food too.  I am no tofu-eating, wheat grass drinking health nut.  I appreciate good ol’ artery clogging, gut busting American food.  In fact, if you ask anyone who knew me before all this, they would tell you that they would have bet the farm that I would never in a million years change the way I ate.  I just loved food too much.  I was well-known for my sweet potato, apple,  and authentic Nation of Islam bean pies ….made with butter and lard ;). 

There was a point when the symptoms of my rheumatoid arthritis just got to be too much.  They were robbing me of my motherhood, my body, and my life.  I would look in the mirror and all I’d see were the black circles under my eyes and my swollen, prematurely aged face.  I always looked exhausted and haggard.  I know I should post some before-pics, but I am just not quite ready to share with the world.  (I am kinda sensitive about pics of myself.)

Few things were as humiliating or infuriating to me as to not be able to simply hold a glass and take a sip from it.  I’d be damned if I was going to sit and allow myself to be assisted with tasks I learned as a baby!  And with that, the food that I loved, even lived for just days before, suddenly just didn’t matter so much anymore.  My self-respect and independence was paramount. 

I have said it before, and I will say it again:  old habits die-hard, especially eating habits.  Too many of us food lovers have a tendency to use food as a comforter in stressful times, so it is important to understand and accept that lasting change will take some time.  I was 28 when I first started to change my diet and my entire food transformation took about 3 years to complete.  It need not take that long, but even if it does, the important thing is that the changes are being made.  Just cutting out gluten can result in significant improvement in flare symptoms.  Removing red meat and dairy along with gluten can yield even better results.  I opted to go gluten-free and vegan because I experienced such phenomenal results. 

It is amazing.  You really don’t know how awful you feel until you get an opportunity to actually experience what it’s like to feel good.  I thought I knew what “good” and “awful” felt like until I went gluten-free and vegan.  I really didn’t have a clue.  It turned out that it good felt SO good, that I didn’t want to ever return to feeling awful.  And awful was a nightmare I never wanted to re-live.  RA’ers take a lot of drugs, but there is nothing like the high of feeling good.  Nothing compares to it.  The only way I know to achieve “good” is through proper nutrition, which for me, does not include gluten or animal protein.

I hesitate to say that we are causing our own pain and disability through the foods we eat and lifestyles we choose to live, but only because it assumes that we all know exactly what we are doing and we don’t care.  I don’t believe that.  If people knew and believed that how they lived and ate were  directly responsible for their unbearable pain, there wouldn’t be so many of us taking prescription cocktails and I wouldn’t have a blog about RA.  The truth is that the media, drug, and food industries are powerful lobbyists with deep pockets.  They need us to stay fat, sick, and dependent on them so that they can stay stinking rich.  They are allowed to convince  us of virtually anything that is deemed lucrative to them, and they do at the expense of our lives.  Our health is our own responsibility, but good advice is hard to come by.  That is why I have started this blog; to try to disseminate the good from the bad advice using myself as the lab rat.  I am here to attest, that yes, foods have an enormous influence over our pain.  In fact, everything we eat is either an investment in our health or an investment in our disease.  Nothing more.  What you choose to do with that information is up to you. =)

Vegan and gluten-free foods have flavor, but flavor does not mean the same thing as it once did to me.  Before, flavor is what I sought to get a fix.  It is what I did to comfort myself when under stress.  Now, flavor is actually the flavor of the food itself, and it tastes good.  I eat to nourish, not to comfort.  Once you separate the emotion from the food, it is a whole lot easier to make the transition and your tastes will begin to change.  Once you experience truly feeling good, that will be the new flavor you’ll crave.

I eat a lot of seasoned brown rice and vegetables,  fresh salads with homemade dressing, smoothies, and juices.  It may sound boring, but only because those foods don’t satisfy any emotional need or food addiction. There are ways of making  cookies, cakes, brownies, and all kinds of sweets that will nourish the body and reduce your pain, while also tasting delicious.   My favorite cookbook currently is Living Raw Food by Sarma Melngailis.  Doesn’t she look great?  She is awesome and while I don’t recommend starting  with her cookbooks (too hard to start with), I do highly recommend getting your hands on them simply just to look at the pictures of her food.  They are gorgeous and taste as good as they look.

Start by removing just one thing from your diet (gluten). Go at your pace.  After a week or two or nine, take another food out (dairy) and see how you feel.  You may want to get the support of a dietician to help you with this process. They can guide you with an elimination diet to identify and remove foods you are sensitive to.  Keep a food journal of all things you eat, so that you can easily track offending foods.  There are no absolutes; no cold turkey unless you know you will be most successful with that approach.  I still indulge in potato chips, chicken, and sugar on occasion, but the majority of food I eat is an investment in my health, not my disease. 

So much to write.  So little time.  More on food and recipes tomorrow Folks!

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Carrying All That Baggage is Just Going to Make Your Hands Hurt Worse: The Role of Thought in RA, part 1

So I want to talk about how our thoughts can actually make us sicker, but it is such a complicated subject that I have decided to break it up into several posts.  This is, of course, the first in the series.  Please feel free, in fact, I encourage you to ask questions!  Ask them here, on the Facebook page, or email me.  Thanks again everybody! 

Patrice on Antidepresents

I didn’t do so well on antidepressants.  Yeah, I could get out of bed and get dressed.  I couldn’t help but smile, but all I wanted to do was cry.  The pills just masked my pain.  It was a miserable and very unnatural existence. After several months, my doctor wanted to add an anti-anxiety, but by then I couldn’t wait to be done with pills altogether.  I felt like Ren when Stimpy tricked him into putting on the happy helmet.  Much like Ren, if I could have taken a hammer to my head to stop what those pills were doing, I would have.  (If you don’t know who Ren and Stimpy are, search them on YouTube.  They are hilarious, if not a bit strange, relics of the 1990’s, not to mention, icons of my youth).

So I dumped the pills, but the black depression remained.  In fact, it had just gotten worse since beginning the antidepressants.  You see, I was supposed to be “SOMEBODY.”  Not some loser’s “baby-mama.” I just wasn’t “THAT” girl.  I had earned my first college degree at 18 and had plans of attending the University of Texas and traveling the world to teach; it was all set into place.  All that was left for me to do was go.  Instead, I flushed it all away and got pregnant.  All I can say is that the regret I felt was crippling, but my perspective, the beliefs I had about myself, and the situation made it far worse… 

Sure, my story may be sad to some, but what is even sadder is that it was years before I was able to undo all the emotional damage I caused.  Not just to my self-esteem and confidence, but to my body and specifically my joints.  It didn’t have to be this way; I had a choice, I just didn’t know it.  I wish somebody had told me sooner that life a series of learning opportunities, not mistakes.  Things happen for a reason; how we deal with the unexpected is only a test of our character.  Besides, when in life does anything ever go exactly according to plan?  Never.  The future is unknown, so we can never anticipate what will happen.   We must be ready to embrace whatever life throws at us, whether it be by choice, as consequence, or purely by chance.

The point is that my story is no more or less “tragic” than anyone elses, and EVERYONE has a story.  How we choose to deal with life when it doesn’t go our way determines how many emotional bandages we decide to carry through life.

Thoughts are very complex constructs of the mind.  Our brains are always thinking.  Most of the time we aren’t even aware of it; thoughts just flicker in the mind for a split second.  However, whether conscious or subconscious, fleeting or deep, they all get sorted and attached to an emotion.  Most thoughts may be classified as “indifferent” but the point is, they are ALL classified AND they are ALL stored somewhere in the brain, either in the conscious or sub-conscious. With time, the thoughts may fade, but the emotions remain and begin to pile up, like pennies in a jar.  The mind can only hold the weight of emotion for so long before the rest of the body is called in to help out.  Hello disease!

The thought-emotion relationship is often overlooked or even dismissed as a source (or at the very least, a major contributor) of disease and pain.  It is much more acceptable to keep patients chemically oblivious to their internal pain.  In fact, it is so acceptable, that more than half of the United States have been prescribed antidepressants.  I am sure there are cases where pills help, but it cannot be denied that little is being done to address the issues that warranted the need for the pills in the first place…..

I don’t have rheumatoid arthritis because I inherited from grandma.  Well, maybe that may have a little to do with it, but not as much as the manner in which  I have dealt with my emotions throughout my life.  I am an intense person, I feel strongly about stuff and I haven’t always had the skills required to deal with all my emotion. The result is that my emotions, left unchecked,  manifest themselves as arthritis pain.   The real kick in the crotch is that once the pain hits, I am less able to manage my emotions, and I am more likely to become aware of other disappointments that I have yet to deal with.  It is like I have an internal cesspool that churns up all the emotional garbage that I have tried to forget.  This all adds up to more pain, and more pain leads to depression, and then to hopelessness.  The whole process is a vicious cycle.  Many of us RA’ers (and AI’ers) really never have a chance; we are doomed to be trapped by our emotional demons.

It was when a herbalist friend of mine gave me a book called, Feelings Buried Alive Never Die, by Karol Truman, that I started to begin to understand the relationship between emotion and  disease.  Now I don’t believe that emotions by themselves hold the key to autoimmune cause and cure, but I do know from my own experience that our minds play a pivotal role in our health and our ability to heal.  According to Truman, rheumatoid arthritis is associated with “the body receiving mixed messages [from the mind]; like laughing on the outside, but crying on the inside.”  Additionally,  the feeling of being, “totally helpless in [the] ability to change life’s burdens.”  She also contends that inflexibility and rigidity in life is manifested in diseases affecting the joints.  If you recall my story from earlier, you know that I could totally relate to what this author was saying….

I realize I haven’t gone as far as I need to, but this is already really long so…..stay tuned for more on thought.  Same Pat-time, same Pat-channel….

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