Can You Trust Your Doctor?

In my case, I don’t think so, but I’m hoping in your case that you CAN trust your doctor.

For those of you that have been following my blog posts, I have been out of insurance (but now have it) for the past three years.  Losing my insurance, because my husband lost his teaching job and we could not afford Cobra, was a blessing to a certain extent because it forced me to try alternative methods, and I found some excellent ones, including my two favorite, Low Dose Naltrexone and Serracor-NK.  Raising my Vitamin D levels and B12 have also been some excellent choices of mine along with other great choices like fish oil, etc., all improving my quality of life.  RA is very hard to control.  Just talk to anyone who’s on the conventional meds and you will find that many still haven’t found the right cocktail, and most are still experiencing joint damage despite taking DMARD’s.   I’m certainly not against drugs, but I will say that taking alternatives has opened my eyes to the possibility of healing my body rather than just suppressing the disease.  So now that I have insurance, it means for me, going back to the doctor, not to see what my choices are, but to get blood work done, x-rays and let the doctor know what choices I’m in favor of.

I hadn’t seen my favorite nurse in several years.  She gave me a giant hug.  “Wow, you look great!” she said.  She asked me what I was taking for my RA.  I told her supplements, but that I wasn’t on any drugs except for the occasional prednisone.  She said, “Wow, it’s really working, you look fantastic!”

Unfortunately, my Rheumatologist experience was definitely a poor one.  Before this Rheumatologist, I had researched and found a much older gentleman who became my Rheumatologist for approx one year.  He was open-minded, not against antibiotic therapy, not against supplements or icing my arm which proved to be the most beneficial in reducing the inflammation in my left forearm in particular, and he had enough experience and knowledge that I felt I had found a good doctor.  When I saw him for the first time, he ordered one x-ray of one hand.

After one year however, he retired.  He told me he found an excellent replacement, a young woman graduating from UCLA.  I was disappointed that I would no longer have my old doctor, but I was open to having a new doctor, especially a woman.  When I met her, she seemed nice enough.  She was young and beautiful and very friendly.  She sent me to x-rays and for blood work.  When the radiologist told me I had 30 x-rays to get done, I thought, “Really?”  At that time, I was not as forthright with my care.  I didn’t put my foot down and say, “that’s way too many.”  Instead, I let the x-rays happen, including one to my throat (which I have hypothyroidism and that’s never a good idea) and including one to my pelvis, (I am of child-bearing age and that’s never a good idea either).  And then I lost my insurance and I got a bill of $700 for all my x-rays.  I fought the bill for over 6 months, and eventually the insurance took care of it.  I was unhappy with the doctor because you should never expose yourself to that much radiation.  X-rays are cumulative, and even though there’s no clear evidence of how much is too much, I’m on a healing path, not a path of increasing the toxins in my body.   And having had a doctor, a great doctor, who only ordered one x-ray, and one later on to compare, I knew that 30 x-rays were approximately 29 too many.

What I find interesting, is that when you look for information on the internet, it’s always, “Well you’re exposed to radiation all the time from natural sources.”  But what makes this ok?  Why would you then want to increase your exposure?  Two wrongs don’t make a right, right?  It’s easy for doctor’s to poo poo the fear of two many x-rays, while billing your insurance, putting money in their pocket, but let me just say this, a close relative of mine who is a radiologist, was quite upset to hear that I was exposed to 30 x-rays before and thought my doctor was a quack and just trying to pay off her college loans.  He chooses not to get x-rays whenever they aren’t absolutely necessary.

I hadn’t seen my new Rheumatologist in almost 3 years and I was convinced that she had probably learned a thing or two since I had last seen her.  Or maybe she would at least know not to give ME so many x-rays.  I was open to the possibility that I just needed to give her a second chance.  Maybe before, she just didn’t know.  She was surprised how flexible I was and how little inflammation and deformity I appeared to have.  So there you have it, my supplement regimentation is working to a certain extent.

At the end of the apt., she asked if I was open to getting my hand x-rayed.  “Sure”, I said, “but please I don’t want any x-rays of my thyroid or ovaries because that can be very harmful.”  She didn’t say anything, so I wondered if she knew what I was referring to and sent me down for blood work and x-rays.

When I saw the technician, he said, “Ok, 18 x-rays today.”  I said, “What?  How can that be?”  And he explained that there were several of each hand, several of each feet, etc.  At first I thought, “well ok, it’s just the hands and feet.”  But thinking back to how many my previous Rheumatologist exposed me to, (totaling two) and considering just 3 years ago, this doctor had exposed me to 30, I told the technician I’d pass.

I walked back to my Rheumatologist office and handed the paper ordering the x-rays to the nurse and said, “Tell her this is simply too many” and left.

I just figured it was time for me to find a new Rheumatologist.  And so my quest begins….

Help Pharmaceutical companies learn about you!

Whether you’re taking pharmaceutical drugs, or alternative medications, be part of a survey so they can get a better idea of what people need.

Centocor Ortho Biotech and UCB Pharmaceuticals is looking into researching two specific demographics of RA sufferers. The first group is for people who are using IV therapy and the second group is for people who are not using IV / injection treatment and are not using biologic meds.  Take this quick and easy survey if you’d like to be part of research.  It will only take a few minutes, I promise!  ((CLICK HERE))

Monolaurin: Quite the Superhero

Monolaurin: Fights H1N1, HIV, Yeast, HerpesIf you’re looking for a supplement with superhero capabilities, Monolaurin might just be it. Read on to discover it’s “powers”.

Monolaurin can be found in human breast milk and certain vegetable oils, including coconut oil. Coconut water is also another great way to get monolaurin and reap incredible superhero benefits. Monolaruin is like an antibiotic only without the side effects. “Antibiotics kill unwanted micro-organisms, but they also kill many friendly micro-organisms. Monolaurin, on the other hand, does not appear to have an adverse effect on desirable digestive bacteria, but rather only on unwanted microorganisms.“-heranswer.com Beyond working like an antibiotic, Monolaurin can do so much more…..

Digestive Health: “Monolaurin promotes good digestive health. A good balance of foreign cells living in the digestive tract has a big effect on whether a person has good digestive health and also whether he has a properly functioning immune system. Monolaurin helps greatly to encourage good digestive health by making sure the contents of the digestive tract are in good balance at all times.”-www.ehow.com

Viruses, (Including Herpes and H1N1), Fungi (Including Yeast) and Bacteria ( Including E.coli): “There are many diverse benefits commonly associated with taking monolaurin, such as the fact that it is capable of balancing the body in a biochemical manner (encouraging self healing and prime health) and is capable of inactivating viruses, fungi and bacteria. It is non-toxic and does not create resistant organisms. It can be taken alongside the majority of medications.”-www.ehow.com

Monolaurin stops viruses, bacteria and fungi from replication: “This monoglyceride is remarkable in its ability to dissolve the outer envelope of viruses, bacteria, fungi, and certain protozoa. Monolaurin is made up of lipids (fats) and phospholipids. Most familiar is the triglyceride tested in cardiovascular risk assessments. …… the first obstacle in attacking pathogenic bacteria and viruses is getting through their outer protective membrane. Monolaurin does this. By destroying the outer membrane, the bacteria and virus is now rendered vulnerable to further destruction. Antibiotics do not dissolve the outer membrane. Their goal is to get through pores (porins), which can shift position. Monolaurin has also been reported to interfere with bacteria and viral ability to reproduce. This is accomplished by interfering with signal transduction, causing failure for the bacteria or virus cell to replicate (reproduce).”-healthkingenterprise.com

Immune System: “Monolaurin is a type of anti-microbial agent that helps the immune system. It is extracted from lauric acid, a fatty acid that also functions as a germicide. Lauric acid is a component of human breast milk, and microbiologists have found that it functions to strengthen the immune systems of babies (whose systems have not fully developed yet).”-www.ehow.com

AIDS: “Monolaurin is known to be effective against several lipid-coated viruses (a class which includes the AIDS virus), and against certain bacteria as well.”-www.aids.org

Safety of use: “One advantage to taking monolaurin is that it is known for being safe. It contains a major ingredient of breast milk, which is lauric acid. Newborn babies rely on their mothers’ breast milk to build up their immune systems. Breast milk contains an abundance of lauric acid monoglycerides.”-www.ehow.com

FDA Approved when buying Lauricidin: “Approved by the FDA, Lauricidin® is the only monolaurin supplement that has undergone clinical trials and laboratory testing. Its antiviral effect is due to monolaurin’s ability to disintegrate the lipid membrane of the virus and interfere with viral maturation. Some of the viruses inactivated by Lauricidin® are oral and genital herpes, Epstein Barr (chronic fatigue and mononucleosis), shingles, HIV, hepatitis C, cytomegalovirus, visna virus, measles, influenza, leukemia, viral pneumonia, vesicular-stomatitis, rubella, respiratory synctial virus, dengue virus, and lymphocytic choriomeningitis. Current research in Kenya with villagers suffering from HIV and other severe illnesses has shown dramatic improvements in the health of those given Lauricidin®.”-lauricidin.com

Inflammation:“In the viral study researchers were doing research in an animal model that parallels early HIV infection and transmission. They found that monolaurin had a powerful influence on signaling dendritic cells, reducing excessive inflammation, and thereby blunting the process that leads to viral infection. The researchers concluded that their study ‘opens a promising new avenue for the development of effective interventions to block HIV-1 mucosal transmission.’ While the flu was not part of this study, the mechanism involved suggests that monolaurin could be useful in helping to prevent excessive inflammation during flu infection by supporting the vital needs of dendritic cells.”-wellnessresources.com

I originally came across the topic of Monolaurin in Daily Strength, a website I frequent for support and as well as giving support. Someone suggested that Monolaurin, when taken on a regular basis, gave her more energy and kept her from getting sick. As I read further, I found more and more people who took monolaurin and found it to be a very powerful supplement. I did decide to take it for around two months. I believe I chose to take five a day, which is less than the therapeutic dose. Although Monolaurin isn’t a cheap supplement, I have discovered just now that lauricidin is pretty affordable. It’s also suppose to be more potent than taking a monolaurin supplement on its own. It comes in scoops of powder vs pills, which is a relief for me because sometimes I’m a little overwhelmed with pills. For a 4-6 week supply, the cost is $30. From everything I have read, it seems like monolaurin or lauricidin could be an essential supplement for people who have troubled immune systems and are on the alternative path. Many of us who suffer from autoimmune diseases also suffer from Epstein Bar Virus, Chronic Fatigue Syndrome and Candida, among many other things that may benefit by taking Monolaurin or Laurididin. Perhaps if those other issues were taken care of, our autoimmune diseases could have a chance at true healing over time.

The Blame Game

From experience when it comes to having RA, it’s easy to play the blame game when a flare happens.  You ask, “what caused this?”   And if it’s not you asking the questions, then perhaps it’s your spouse, your family member or your co-worker.  Most of the time,  you don’t know the answer of what causes a flare.  If you did, you’d stay away from it.  You’d stop talking to your mother if that meant you’d never have RA again.  And sometimes you have a pretty good suspicion of what just threw your body into wicked pain and disability.

I was already feeling run down but I had to make it to a 40th birthday party.  It was important,  I couldn’t miss it.  If I could do it all over again, I’d still have gone but I would definitely change a few things.

I was human.  I made typical mistakes.  I pushed myself too hard.  I drank too much,  I danced too much.  I got too little sleep.  I ate all the wrong foods the next day:  soup with noodles, bread and then pizza.  It was all to calm down the acids in my stomach, quiet the nausea I had and the dizziness from drinking WAY too much and also comfort myself because I felt so ill.  My pounding head was keeping me from thinking any rational thoughts anyway.  I’m sure my headache wasn’t just from the hangover.  It had been hurting for days before I made it official.  My RA wasn’t bothering me (yet) probably because alcohol thins the blood.  The funny thing is, I had been avoiding alcohol for quite some time.  So when the party came, I decided to give in a little.  And you know, once your inhibitions are down, this is when your choices can really go out the window.  In the late evening when I reached for another cocktail rather than water, that’s when things became tipsy-turvy.  And when that sweet drink went down and I was STILL thirsty, I reached for one more.  Of course at this point, I was too buzzed to talk myself out of it.  I could still stand.  What was the harm in one more drink?  Actually, my mind didn’t even go there.  I just thought, “I’m thirsty……got liquid?”

If only the hangover could happen right then, so you can stop the drinking.  Instead, you just feel great and numb to any rational.  I didn’t drive home of course, but as a passenger, I felt like hanging my head out of the window like a dog.  Of course, it would have been for relief, not for enjoyment and yes, my tongue would have been sticking out.  To make matters worse, I’m one of those people that actually holds everything in, no matter how sick I am, poisoning my body far worse than most.  Most people share in the ritualistic experience of expelling the poisons.  I on the other hand, could probably swallow hydrogen peroxide and keep it down.

That was Saturday.

Sunday was spent nursing my hangover.

When Monday came around I was in a horrific flare.  I knew it was everything that I had done wrong:  too little sleep, all the wrong food, coupled with all the sugar from the alcohol and did I mention, alcohol is a poison?  Oh yeah, you know that already.  Bread, pasta, everything I ate that day was inflammatory, at least, according to my reading it is (current pick is “The Inflammation Free Diet Plan”).  And here in lies the blame game.

So yes, that morning when I got up to go to work and my stiff neck, rocks under my feet and wrists that felt like they were in a torture device trying to pull them apart, were all slowing me down and keeping me from getting to work on time, I played the blame game.  I blamed myself for making wrong decisions that night and the next day.  I blamed myself for the sleepless nights on the weeks before the party that made me run down.  I blamed myself for all the exercise I skipped for a couple of weeks because I simply felt tired and lazy.  I blamed myself for all the supplements I forgot to take.  And I went into work feeling angry and frustrated for all the things I’m suppose to avoid and all the things I’m suppose to do to quiet my condition.  And I felt embarrassed that maybe I could have avoided this.  There was no skip in my step, no ambitious agendas ahead of me.  It’s not enough to have RA, you’re also suppose to be great at eating all the right foods, getting good sleep, living a stress free life and getting exercise, haven’t you heard?  It’s tiring avoiding things and trying to stay on the straight and narrow.  It’s tiring taking supplements.  It’s tiring just knowing that there’s never a real break from any of it.  And yes, I still have yet to try Yoga.

I’m still in a flare but at least I can turn the steering wheel now without wincing (as much) and without the staccato jerky turn only a person who probably shouldn’t be driving might do.  At least I can view my computer screen again without the blurry vision that accompanies me when I’m in a really bad flare.  And at least I can finally put my arms to my sides without feeling like my wrists are being pulled off.  And in no way does this flare compare to ones of the past where the pain and disability made me crazy.

I’m still tired however, hoping things will somehow change, hoping one day I’ll reach remission.  I think I’m learning, slowly but surely. ……….. Oh hey, will you pass that bread?  ……..but I will probably never be perfect.  After all, I am human.

2nd Shot at Acupuncture

This morning I drove half an hour to try Acupuncture again.  I had tried it once before for $50 at a Korean venue located near Hollywood, California.  That experience had been very relaxing.  The needles for the most part, didn’t hurt and I was hopeful that this could reduce inflammation in my Rheumatoid Arthritis.  At the time, I was taking Methotrexate and Prednisone.  Soon after my appointment, I started to flare up.  At that time, I knew nothing about how alternative medications can and often cause an exacerbation of symptoms.  My flare lasted three weeks and I did not go back.

In hind-sight I realize that my flare was just the healing process when using natural therapies.  It was just an average day and I felt like looking into acupuncture again because it’s something I wanted to try once more in the future.   Before I got to far into my research, I came across an acupuncturist who was offering services “at an affordable sliding scale”.  For me, I hadn’t even considered going back anytime soon.  My full time job has gone down to part time and I’m currently looking for more work.  But with services being offered for as low as $25, I took it as a sign that maybe I should go in for treatment.  After all, I don’t HAVE to have conditioner for my hair for a couple of weeks.  I could just survive on saved bottles from old visits to hotel rooms of both shampoo and conditioner.  I could cut back on spending for groceries, etc.  Reducing inflammation in my hands is top priority for me, so why wouldn’t I figure out what I could do to make it happen?  I decided it was worth the tighter squeeze in my budget to give acupuncture another shot.

I told Michael, the acupuncturist, about my previous experience.  He decided we should take it slow.  For this trip, he inserted needles only in my hands and feet.  He said that acupuncture is sort of like, “stirring up the mud in the water” and it gave me a clear vision of a shallow muddy pool being stirred up until it was a thick, murky brown.  I also told him that I had been taking conventional RA drugs when I tried acupuncture before and that now I was on supplements to control inflammation.  He felt that perhaps this time I would not flare up like I did because I have already spent so much time detoxing my body.

The visit: My experience before was in a large building, set with a receptionist, several doctors on hand, ringing phones, a waiting room, and when I went in, I had a diagnostic machine that claimed to tell me which organs in my body were not working correctly.  To this day I wonder if there was any truth to that.  Since that had been my first and only visit to acupuncture, I was surprised but not disappointed to arrive at a quaint town-house and I settled in to a cozy room.  It was personal, lovely and I felt confident that Michael knew exactly what I was trying to accomplish.  The needles were chose carefully.  Just a couple were inserted into the palms of my hands and a few to each of the tops of my feet.  Michael told me the needles in my palms were points specifically found to reduce inflammation in arthritic hands.

Next time we would do more, but for now, no need to stir up the mud in the water too much.  As I lied there, I could feel some activity happening.  My feet weren’t changing in sensations, but my hands were stirring up the mud.  They started to become a little stiff and I could feel pain starting in on my wrists.  I was amazed that just two little needles on each palm could have such a big effect.  (My hands generally don’t feel pain but used to before my change in therapy).  I was worried that I’d have very swollen hands and wrists for the rest of the day.  I took some deep breaths and told myself, “give into the process”.  I finally relaxed, settling into a comfortable state, listening to the beautiful music and enjoying the ambiance.  When the experience was over, I set up another appointment for next Saturday and drove back home.

I was a little more swollen on my way home, just in my hands.  But as the day progressed, the swelling ceased, and my hands feel a little less inflamed than usual.  It could be a placebo effect since I know that acupuncture usually doesn’t work this quickly.  Still, I’m happy about my experience and excited about the prospect of fixing the tail ends of my inflammation once and for all.  Maybe THIS will really work.  In the meantime, I plan on telling all of you everything about it!

My first journal entry on Daily Strength: Aug 8, 2007

To those of you who wake up every morning in pain, or sit for a few minutes and have trouble getting up……or feel weak, tired…. depressed…….. or have people who don’t really understand……… to those of you who keep trying everything you can to get rid of your flare, hoping to just get back to your normal self……….. and to those of you who are saddened that you can’t do the things you use to do……..like pick up a child, or open up that bottle of water, or take off your bra. Yes, there are days I can, but plenty of days that I can’t. And to those of you that read online things like, “arthritis is possibly caused by poor diets, lack of exercise, unhealthy lifestyle…etc.” and get frustrated because you exercise everyday, eat healthfully and always have, etc…………………

I can relate………and, I want to hear from you!!!

I’m certainly not going to loose hope that I can’t get back a semi normal lifestyle. Plus, with medical advancements, you just never know.

But for now, I continue on my journey wanting to hear from all of you……..in our quest to improve the life we have and to share with each-other R.A. which I truly believe no one understands until you have it.

For instance, I love to exercise and I always have. When I exercise I do feel better. But during a time when I’m not having a flare……..I still can’t do….say… yoga. There are just simply things I can not do. I can’t bend my wrists like I use to……and I’ve lost a lot of strength. When I’m not in a full blown flare, I excersize as much as possible while I can. When I am going through a flare (which I am now) and just so you know, I’ve been on prednisone for 8 months………and now I’m on methotrexate for the first time as well as still on the pred. I’m having of course nausea and hair loss. It sucks and I’m not sure I really want to be on this medicine. At first I thought I did, but I just don’t know anymore…….even though I don’t have any better ideas. But anyway, exercise baffles me. Because now that I’m flaring again hard core, I’m still going to the gym. When I get there it takes all of my effort to get myself moving. But once I start moving, it gets a bit better……and continues to improve slightly (never like it use to) but enough that I’m feeling more confident and happy. The moment I stop…..like literally take a step off the elliptical, I feel as though I’m right back to normal again, meaning pain and stiffness, and it takes all of me to get myself out of the gym and back in the car. Sometimes I have to pull on my legs to get them up on the elliptical.

How many of you have tripped on your way into the shower because it’s too hard to lift your legs? Or how about…..how many of you have worried about your driving skills now that it’s difficult to turn your head and the steering wheel? Any of this sound familiar?

On my last day to drink for a long time which was Sat when I went to this amazing wedding. I drank too much of course, champagne, etc. I exercised that day already so I could feel better in the evening. I took prednisone and plenty of pain killers. I know, I know, terrible on my liver. I didn’t start Methotrexate until last night which was on Doctor’s advice………he knew I’d be bingeing on sat. Anyway, my point: So there I was at the wedding, tipsy, dancing, and having a great time…..the most limber and energetic I had been in a while. And a woman I know who is a friend of mine and knows of my R.A………we were walking partners and with my last flare I had to stop the early mornings… Anyway she said, mockingly, “Your rheumatoid isn’t bothering you now is it?” and it felt so……….you know, like you must be faking this sort of thing.

O.k. now you heard me vent. Ahhhh, this is what a journal is all about.

Health before Wealth

Recently I was talking to my mom about the newest thing I’m thinking of trying. It’s suppose to balance the pH of your water, along with add electrolytes and minerals. (see link) She asked, “How can you afford to take all of these things?”

The truth is, financially I can’t really. I’m stretched as thin as a rubber band, ready to break at any moment. These are hard, economical times.

On the flipside, can I afford to NOT keep trying new therapies in hope that remission will soon be giving me a high five at my doorstep? Sure I’m feeling great in a sense that I’m completely functional with RA. But as long as I’m not in remission, there’s still damage being done. I’m thinking long term. It’s the same as keeping up on your teeth cleaning. If you don’t, you could end up with some serious tooth decay, along with heart conditions and toxins invading your body. What kind of damage is happening to my hands long term? And there’s no guarantee with conventional drugs either that you can skip out on the deformities. Just clue into a recent post and you’ll see that hand deformity is just like the disease itself in that it varies from person to person. So you have to do your best to get inflammation under control no matter what you’re taking. Even if you’re taking DMARD’s and Biologics, you have to consider that eating right and exercising would be a wise, helpful choice since these medications can raise cancer risks, among other things. Our bodies are long term investments.

From time to time expense comes up as a topic in my RA support group. The idea of going organic, buying fresh food vs packaged, and taking supplements that can improve overall health seems too expensive to some. Most people embrace the burden of the extra costs, but a few need encouragement that long term, investing in the right foods and supplements will save money. This is particularly tough when a lot of us, including myself are living paycheck to paycheck. What you pay now at the grocery mart will help determine the costs of your future medical bills. Just like I am spending money on supplements, rather than movies or haircuts, I’m figuring that the money I spend now could make for a less expensive health bill in the future. Not only that, but the better I feel and the more that I can do, the better chance I have at making more money in the future, simply because I’ll be able to keep up a career and hopefully advance in that career.

So my motto is, when you’re trying to decide what to eat for lunch and your choice is a hamburger on the doller menu or that organic salad with grilled, free range chicken that were raised without antibiotics….. choose the latter. Because in my opinion, you’re going to be paying for your health in one way or another.

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