In Case You Think I’ve fallen Off the Face of the Earth……..

artwork by Shel Silverstein

I’m back!

Hi everyone!  For those of you who have followed this blog, you may have noticed that I abandoned writing for an unusual length of time.   What you don’t know is a company that didn’t appreciate one of my articles was trying to sue me.   I had received stacks and stacks of paperwork and I read every sentence.  I was never actually sued, just threatened.  They even threatened to put me in jail.  Who knew, a young rheumatoid arthritis sufferer could get so much attention?  Handcuffs could really hurt.  ;P  I don’t believe even for a second that they had a case but just for the record, anyone can be sued for anything at any time.  Guilt seems like an unnecessary ingredient in the court room these days.  It didn’t matter that I was sharing an experience, and that freedom of speech is a right. What mattered was that I grew tired of dealing with it, and in turn, they had shut me up.  They had accomplished taking away my voice.  Because of this, I left the blog world for a long while.  I even stopped writing entirely.  I didn’t even notice when I hadn’t renewed my internet hosting account.  I was sort of turned off.  Even journal-ling felt like a chore.  I turned my focus on other things, other things that were also going on in my life and taking up all of my time.  But because I stepped out of the habit of writing for so long, when I sat in front of the computer, I was stumped.  How was I able to come up with words?  You know, those letters that are grouped together and with some effort, turned into an entire sentence and then a paragraph that then becomes an entire article?  Even the very first word seemed difficult.  Hello.  Hi.  Uh…..    This time, more determined than ever and knowing that the writer in me still lives, I decided to return to some of my old habits, otherwise that very first article would never appear.  I did in fact post an article but a friend of mine let me know that it sounded like I just wanted to hear myself think….  It was the equivalent of ordering 2buck chuck for guests that are expecting fine wine.  In the right circumstance this is great, but as my first post, it needed to sound like me, not a watered down, just going to write a bunch of mucky junk and call it a post.  No, that wasn’t going to get swallowed easily.  It needed to sound like me, the old me, the me that had an opinion and was fallible and was always searching for something more.  Just an fyi, if you do like wine, I’m all about the organic red Green Fin from Trader Joe’s.  Incredibly affordable!  Oops, that’s a secret because they’re always running out.  Leave me some!  My point is, my voice was still being suppressed because I had buried it so very deep.  I am proud to say I think I’m finding my voice all over again.  I think my writing is certainly rusty and grammatical errors are bound to appear, but I want to say thank you all for your support and thank you dear friend for giving me that critique. It was the permission I needed to bear my soul.   Ahh, I like the sound of that!

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….

Feeling Out Of Control

I can’t say FOR SURE why I am flaring, but I have my suspicions.  I’ve actually been flaring for some time now, probably a couple of weeks and it’s getting worse.  As you may know already, I experiment with many supplements.  When I find something that works, I continue with that program while also trying something new.  My mom and my husband both think this system isn’t a good one.  Perhaps they’re right, but on the other hand, they haven’t suggested anything better.  I just try to stay in tune with my body as best I can and go with my gut.

I could be flaring because I haven’t exactly been consistent with taking the supplements that do work.  Those would be Serracor-NK, Low Dose Naltrexone, vitamin E, quercetin, Zyflamend, and maybe a few others.  In fact, sometimes I run out of stuff and simply don’t buy any more of the product.  I’m looking for the ones that carry a powerful punch and I feel that so far, Serracor-NK and Low Dose Naltrexone are the only two on that level.  Anything “extra” is like taking a baby asprin.  All the pills start to get a little tiresome to take.  All the money spent on them is also quite frustrating.  So when I run out of those “extras”, I’m often not consistent in ordering new pills, especially if I’m on a really tight budget.  And that does happen to be the case right now, unfortunately.

But I don’t think that’s why I’m flaring.  It could be, but I think it’s from a new supplement called Osteo-tec.  I think I’m experiencing Hering’s Law, but I really can’t be sure.  I’ve been on this stuff for 81 days now and was hoping, according to the clinical studies, that by day 90, I would be experiencing considerable relief.  The only thing is, in my research, I can’t find anyone who has experienced a flare on Osteo-tec.  I would assume that it would be very likely that it would happen due to the fact that any natural supplement, especially if it’s going to work, will put someone like me who has severe RA, into a big flare.  But since I can’t find any info on the internet about Osteo-tec in particular doing this, I’m only guessing.  This is completely new territory and again, I’m on my own.  I realize each person’s chemistry is different, so there’s no way to ever know for sure.  I’m just hoping that light is at the end of the tunnel and that soon I’ll be out of this flare and feeling great.  Many gentle hugs to you all, and thank you for visiting!

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.

Saying Goodbye to Acupuncture for Now

I don’t want t o give it up acupuncture. I do notice a slight difference and enjoy the attention. But since every Saturday I was having to get up a little earlier than I would naturally and since every week it was costing me $20 and I am currently more broke than ever, I simply can’t afford to keep going. I was noticing the biggest difference in my left wrist. And although I think it’s probably worth the money and time, I’m just so concerned with money right now that I can’t rationalize doing something that’s only making a slight difference. Maybe I’ll go back in the future but so far, unless money is no object, the benefits are not extraordinary enough. Supplements are so costly and I spend a TON on them. So that’s where I’m at. I do feel sad about it because I know it was helping a little. It was definitely improving my life, but I would only recommend acupuncture to people with RA who are near remission. Otherwise, it will probably just make your symptoms worse. I always flared during the visit. But the after effect of less inflammation was worth the flare. In the past however, when I wasn’t on alternative meds and tried acupuncture, I had a terrible flare that lasted weeks. It was awful! So again, I would only recommend acupuncture to those who are doing well with their disease and trying to ease smaller symptoms but not to people who are in the middle of a healing crisis, or worse, still looking for the right cocktail altogether.

Accupuncture Visits for Rheumatoid Arthritis

I admit it, I’ve done a terrible job keeping up with posts on how acupuncture is going for me.  So rather than waiting to write a post where I tell you exactly how many visits I’ve had and what’s happened at each one, etc., I’m just going to take the easy road and make it simple.  I’ve gone to every Saturday appointment except for two and last Saturday I got a parking ticket….so much for letting that relaxed feeling linger……

I can tell you that whenever I do go in for acupuncture, I get a flare during the visit.  You might think that sounds terrible, but to me I think of it as progress.  Anything natural will make you flare up, it’s just part of the process.  And that’s the hardest part really, is how to tell the difference between something that is making you worse or something that is making you better when they both have the same reactions.  This excludes immune suppressive drugs because they work entirely differently.

Within an hour usually, my flare subsides and lately I feel fairly great for a few days before the inflammation comes back to its normal state.  I would definitely say the acupuncture is making a positive difference, however it’s very slight.  I’ve decided to keep going however, based on theory.  So here are my theories on why I should keep going to acupuncture:

1.  Acupuncture increases endorphins.  Endorphins help heal the body.  Therefore, I must be doing some, even if it’s small, amount of healing during the visit.

2.  Acupuncture increases circulation.  Over time, perhaps increasing the circulation will make a bigger decrease in the amount of inflammation in my body.

3.  Even if the decrease in inflammation is very slight, it is still something.  And perhaps that small amount will slow down the erosion and disability.

4.  The Placebo effect.  As long as I don’t get any more parking tickets, perhaps the placebo effect of thinking the acupuncture is helping somewhat, will help decrease the inflammation.

Michael has been using a Chinese technique that would make some people cringe where you prick near the fingernail with a needle in certain spots (on a few of the fingers on each hand) and cause your hands to bleed for a moment.  Maybe that doesn’t sound fun to you, and it isn’t really.  It’s nothing compared to RA pain.  I do, in all honesty feel like it is decreasing the inflammation more so than it was before he had tried this technique.  I was glad that he was open to asking me if I’d like to try it because most people would probably be against the idea.  To me it makes logical sense as well, that it would increase circulation.

So there you have it in a nutshell.  I’m going in tomorrow and this time I’ll circle around for 10 minutes if I have to so I can find a parking spot that doesn’t allow for any more cruel tickets.  I hope you all have a great weekend and thanks as always for visiting!

Acupuncture: My Second Visit To Culver City

I just wanted to give an update to those of you following my acupuncture visits.

It was another early morning for me, on a Saturday, to which I’m not used to. Of course, to the average person, 11 a.m. is not early. But I’m working part time right now and my hours do not require me until later in the day. This is a farther drive than my work, so it’s even earlier than I’m used to getting up. Since I would normally sleep in on the weekends, getting up at 9:30 to make it to the 11 a.m. appointment is not easy for me. I’m hoping I get used to this. And for those of you that don’t understand why I would need so much sleep, let me explain it like this: My body works hard at destroying what it can during the day. It tries to damage my joints, ligaments and organs. So sleeping is a chance to undue some of that damage, or if nothing else, give my body some time to rest from RA’s damaging effects. So yes, because I’m a natural night owl, waking up with to the loud “BEEP, BEEP, BEEP,” is fairly hellish.

But I’m on a quest. And that quest is to find out if I can stop the inflammation in my hands and feet. And if the answer is acupuncture then GREAT, and if it isn’t, then I’ll keep looking. I think Michael is a talented physician and if nothing else, he’s very sympathetic and caring. When I first sit down for evaluation, he takes a look at my hands and feet, and without hesitation, touches the inflamed joints trying to feel for any improvement. He asked me if there was any change in my joints after my first visit. I told him that for about one hour, my joints in my hands, not feet, were stiffer and more painful but after that hour, they seemed to have less inflammation than normal. He told me this can happen and not to worry and this is part of the natural healing process. Knowing this already, I wasn’t worried. I know from all the supplements I take that getting more inflammation at the beginning of a treatment can and often does, make you temporarily worse. So the fact that this had made me worse for only an hour, I thought, “Piece of cake”. Again however, he chose to only do acupuncture on my hands and feet, in fear that I might experience what I had the very first time I visited a different physician, which ended up in a three week flare. He wants to take things slow with acupuncture so that not only do I get improvement, but don’t have to deal with unexpected inflammation.

Again, two needles on each hand were placed in the raised parts of my palms. And again, needles were placed in my feet but in slightly different spots. I experienced pretty near the same thing as the last time…. Pain and inflammation seemed to increase during the treatment in my hands. My feet again, for one reason or another, did not experience any pain or inflammation. This time I was surprised that the inflammation in my hands lasted only about a half an hour (after treatment) and for the rest of the day I experienced less inflammation and more relief than my average day. My feet seemed to be unchanged. I do have a couple of spots on the outer parts of my feet…the bunions that are inflamed ever since RA began. So I have no idea why these spots aren’t “awakening”.

I believe in giving everything a good shot and at $25 a session, I can’t refuse this kind of opportunity. I plan on sticking with this for at least one month, if not two, depending on my finances. I hope sometime soon that I can share with all of you, a story of amazing relief from the acupuncture. But if that doesn’t end up happening, then if nothing else, I’m relaxing, truly relaxing for that hour each time I visit. I have a good feeling however, that I will experience tremendous relief from this, so I’m keeping my hopes up! If anyone has a story to share, please do!!

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