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….

What’s Making You Sick?

Obviously if you’ve come to my site, you probably have an autoimmune disease or know someone that does.   Your body is working against you.  So not only is your body making you sick, but perhaps your medications give you side effects or constant popping of supplements has you feeling ill.  Or could there be something else going on that you don’t realize, in addition to these things?

I want to tell you a story about a recent experience of mine.  I joined a clinical trial because I don’t have health insurance, and I was interested in getting some blood tests for free.

I was of course disappointed when I found out I wouldn’t be paid and the drive was quite far.  I would lose a little bit of work here and there, and even more importantly,sleep.  Still, I rationalized at the first visit that if I had the real deal and not the placebo, it would be worth the drive. The tests and the pill would add up to a lot of money, so why not give it a shot?

When I got the pill, I rushed to my car and even though I know you’re not suppose to break open the capsule, I did. I eagerly wanted to know…did I have the placebo or the real thing? It was a bright orangy yellow and it tasted, from what I could remember, like turmeric. I was ecstatic! I believed I had received the real thing!

I began taking the pill as described… 2 pills twice a day for one week, then 4 pills twice a day from thereafter.

My blood tests at initial visit showed that my CRP was within normal range. I still had substantial inflammation in my hands, but the doctor was surprised with my “normal” results.  My next visit however, about a month later, I was having more inflammation and my tests showed it, along with my joints. I chalked it off as being a “healing crises” and continued taking my pills, thinking they were going to soon give me great benefits.

About a month later, I went in again. This time I was doing much worse. Test results showed higher inflammation, hands were far worse and elbows and other joints, including my neck were starting to become painful and really stiff again, something I hadn’t had in years. If you don’t know what this feels like, it feels exactly as you would imagine waking up from a bad car accident would feel like.  Instead of waking up in the hospital bed, with hovering nurses and family, you’re waking up in your own bed, turning off your alarm clock and forcing yourself through the disability and pain to get through your day.  Your neck feels like whiplash, your hands and wrists won’t bend and it hurts to be touched.  Driving is dangerous and near impossible but you do it anyway.

The doctor told me I could come off the pill if I wanted…he hated seeing me suffer. He said the other guy asked if there was prednisone in the pill because he was feeling so good. But since I’ve taken lots and lots of supplements and experienced the “healing crises” first hand from many of them, I decided, “the worse the flare, the better the pill”. I explained to the doctor what had happened to me on other pills that ended up working out and that I had hoped turmeric wouldn’t do that to me, but since it is, maybe I’m not on the placebo and I’ll be reaping benefits here soon. He seemed surprised and sent me on my way. Secretly I was thinking, “wow, how can he not know about the healing crises?” And I felt FOR SURE that I MUST be on the real thing!

But then things got worse…. I missed an entire week of work. yep, seriously, I did. And I continued taking those stupid pills. I kept thinking, “i’m really going to feel great any time now.” But I didn’t. I got night sweats, aches and pains, extreme fatigue… I was at an all time low, one I hadn’t been at since the beginning of my RA, or at least not for some time. I improved my diet, took more pills of the supplements that I knew worked and felt confused why I wasn’t getting better.

Finally it occurred to me, “maybe I’m not on the real pill.” I came home one evening, made a plate of one teaspoon of real turmeric on one side, and the pill’s contents on the other. My husband and I did a look and taste test. The colors were different for sure. And the taste…. turmeric has a very distinctive taste. The powder from the pill however in comparison, I realized, tasted like flour, maybe???? but definitely not the turmeric on the other side. Nope, compared to that, it didn’t have a taste. My mind must have deceived me when I tried it before! I had been so hopeful!  I just stupidly thought that they wouldn’t go to so much trouble and make a powder that looks and tastes like turmeric. Well they did, I was wrong, although the taste in comparison, ISN’T the same, now that I realize.

Unfortunately, I have not been able to find out all the ingredients that were in the placebo pill.  But for sure, I had been taking yellow #5 and yellow#6, as well as potato starch.  I am assuming the main ingredient was probably flour.

The day after I stopped taking the pills I started to feel better.  Recovery has been slow but consistent.  It’s completely apparent to me, that my intake of 8 pills a day of possibly flour and food coloring was the big culprit of my wild, almost four month flare.  Since then, I have been trying to eat very cleanly, no processed foods, trying to get my system back to normal again.  Luckily I am feeling fairly good again, but I really did learn a valuable lesson. That lesson is, my body doesn’t have “allergic reactions.”  Instead, over time, it reacts by an increase of inflammation, damaging tissues, organs, and joints.  As a result of this experience, I am far more aware than I ever was, that processed foods and food colorings are a big no-no.  Sure, they are extremely hard to avoid on a daily basis, and I have slipped up a little.  But in general, I am eating a very clean and organic diet and I’m hoping in time my body will continue to improve.

So ask yourself, what are you eating that might be fueling your fire?  Perhaps it’s time to try avoiding it for at least two weeks, which should be enough time to feel the difference.  And let all of us know what increases your inflammation, because we’d all like to know!  :)

The Sting of Good Intentions

As with any disease, RA can be frustrating. A general work day for me consists of sitting at my desk. The consequences of this for RA means stiffness, ankle swelling, feet swelling, hip pain, etc. etc. The more you sit still, often it makes the stiffness and pain of RA an even bigger problem.

On the flip-side, exercising can be tricky. RA has fun traveling around the body, making parts swell unexpectedly. Everything from severe sharp pains, to a dull ache, to something in between can be a regular day for anyone with RA. But because it varies from person to person, from day to day and from minute to minute, there’s just no telling. Complaining isn’t something I normally do because at least I wasn’t affected with RA until I was 30. The reality is, RA can affect babies, and the result of that can even lead to blindness….but that’s a whole other topic. Sorry to be a downer but reality bites, and to not know that RA can affect children isn’t right. Knowledge is power, because with knowledge, at least then, we can work on solutions. But anyway, back to my story.

So my intention today was simply to get some exercise. It is my daily goal to exercise, even though I might not fulfill it. I took my normal long walk on a beautiful late sunny afternoon down a gorgeous street where homes leave me feeling breathless.  I like to daydream that one day I’ll be living in a beautiful house rather than my one bedroom apartment. My right foot was bothering me again as it has these past couple of days. Rather than babying it, which could lead to more stiffness or better recovery, it’s too hard to say, I decided walking was the answer. My body needed circulation, I needed the sunshine and the breeze, along with the spiritual feeling that I get on these types of walks. Only today I was limping. Limping I did, trying to take the pressure off my right foot, but flexing nonetheless, hoping this could help the stiffness and ease the swelling. I pushed through, even though over time it got worse. My walk is about four miles I’m guessing, but I really don’t know. I hit my two mile spot and turned around. I was catching up on my Sunday calls when suddenly I felt a sharp sting on my left foot.

Thinking it was nothing but a shrub or stick briefly poking me, I think I ignored it for half a second, concentrating on conversation. But when the piercing sting kept on, I heard myself say out loud, “Ow! OW! OW!” I looked down and saw a yellow hornet furiously stinging my left ankle. I brushed it off with a heavy hand, since that’s what it took to get it off of me.

“Dang it,” I said. “A hornet just bit me!”

My friend asked, “Are you ok?”

I said, “yes but I’ve never been bitten by one. Hopefully my reaction to it will be fine.”

“Do you need to call someone?” she asked.

I said, “No, there’s no one I can call.”

She said, “Well I hope you aren’t too far from home.”

I said, “Oh a ways, but hopefully I’ll be fine.”

We continued on our conversation and I ignored the throbbing sting. I was somewhat surprised at how easy it was to ignore the constant stinging where the hornet had stung me over and over. I would have preferred it sting my right foot, that way I could limp more easily. Now both feet hurt to walk. I took off my left shoe because the stings were right at the edge of my shoe and it was rubbing. Then I sort of hobbled home, putting more pressure on my left foot than right because my right foot was killing me and stepping on my left wasn’t making the stinging pain better or worse.

When I got to my apartment complex, I had a long talk with a neighbor who’s suffering from psoriatic arthritis. She’s had psoriatic arthritis for less than a year but she has two fingers that are permanently disfigured due to inflammation shortening the tendons. She asked about my foot, since I was carrying my shoe. I told her the story and said I wished it had been the other foot, but that I was fine.  Her fingers gave me another good reality check, that my situation wasn’t all that bad, even though honestly, I wasn’t feeling sorry for myself, just annoyed that my right foot was hurting more than the hornet sting.

That evening, I tried to relax over dinner and tv. My husband was coming home from a friend’s house. The surprise was that the hornet stings barely bugged me. (Pun intentional) Sure it hurt and wasn’t fun, but compared to RA, it was nothing. So I just wanted to say that if you’ve ever wondered what hurst more, a sting from a f lying insect or RA, my vote is RA. I’ll take a sting any day, or every day if RA would just go away.

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.

%d bloggers like this: