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….

Alternative Options for Multiple Sclerosis

Having an autoimmune disease, or in my case, a few, has increased my interest in learning about other diseases, as well as other treatments.  Of course, I think I have always had an interest in medical literature.
And since I’m on an alternative path of treatments, my interest definitely sways into the natural and homeopathic, even though I am certainly not against conventional medications.   I have no idea where this interest came from, but it has always been there, along with many other interests in my life.  And Mom, please stop telling me I should have been a doctor…I’m an artist, first and foremost!  I didn’t become interested in learning about multiple sclerosis until I had Rheumatoid Arthritis.  Before this, my uncle developed Lou Gehrig’s Disease (ALS), and later, after I developed RA, my father developed Parkinson’s.  Though my uncle is not related by blood, this still added to my growing interest of wanting to put a halt to all the disease in my life.  Perhaps if I could learn about these diseases, I could also come up with theories on how to improve the lives of those that had them?  And why did it seem like diseases were on an upswing?  My quest for answers continues, so I hope you can share in my journey to help the lives of others.

I was on Daily Strength one day when someone with both Rheumatoid Arthritis and Multiple Sclerosis wrote in on one of the posts.  They mentioned how Low Dose Naltrexone had changed their life.  At the time, I didn’t pay much attention to it and later couldn’t find the member.  But months later I had remembered Low Dose Naltrexone and started researching.

Upon research I found communities who knew a lot about Low Dose Naltrexone, and also people who knew how to be terrific supporters.  I gained friends, many who had MS and as a result became more interested in learning about Multiple Sclerosis.  I also hoped to simply learn more about neurological diseases.  My dad, new to Parkinson’s wasn’t as keen as I was in alternative medications at first, but soon I coaxed him into trying LDN.  I don’t think he thought it was doing much until months later when he ran out and realized he noticed a substantial difference.  I also have him taking higher doses of Coenzyme Q10 which has been shown to slow down the progression of both PD and ALS.

Multiple Sclerosis has been particularly interesting to me because the treatments for MS are currently inadequate.  Ask anyone with MS and you’ll hear the same thing.  That’s part of the reason why so many people with MS discovered Low Dose Naltrexone.  You can say the same for Pulmonary Fibrosis and many other diseases where people are given steroids, antibiotics, and other medications hoping to change the course of the disease and yet the disease for the most part, continues to progress without much change.  Pulmonary Fibrosis is a disease that can also be treated with Serracor-NK and Serra-RX because it reduces scar tissue.  Scar tissue can cause many health problems and diseases which is why reducing this scar tissue and fibrin which causes it, using Serrapeptase can be so helpful.

  What is MS?  Watch this video to learn more.

Recently, I’ve been thrilled to see that Serracor-NK is a recommended alternative treatment for Multiple Sclerosis.  It’s also compatible with most drugs, so another great solution if you have MS and are on CRAB drugs, antibiotics, or steroids.  Because I take Serracor-NK and know how well it works for me, I imagine that it would also work well for MS.  There are lots of theories out there that MS and RA are actualy closely related.  Whatever the case, any treatment that works for MS is a miracle.

   Watch an MS relapse to better understand this disease.

In MS, the myelin protective sheath that covers the nerve cells is broken down by immune complexes that are embedded in it. Serracor-NK,Serrra RX80 and other proteolytic enzymes break down the destructive immune complexes and can dramatically reduce MS symptoms. While regeneration of damaged tissue is not possible, regular supplementation with enzymes has been documented to halt the progress of degeneration associated with most stages of MS.”-biomediclabs.

  Reversing MS, is it possible?  Research shows new hope!

Hopefully soon we will find real solutions for our medical issues.  Until that day comes, I hope that you will join in the research, theories and recommendations that myself and many other people provide.  I will always mention, I am no doctor and this is all solely my opinion, but I do hope that this site helps you!  Hugs and thanks, -Sarah

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!

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.

Trusting Your Doctor

I was speaking with a friend who just got results from her doctor, saying her liver enzymes were raised. The doctor advised her not to drink any alcohol. I immediately asked, “Are you taking Ibuprofen?” I knew her knee had been hurting her, and she wasn’t one to avoid over the counter medications. Her response was, “but my doctor said Ibuprofen would not raise my enzymes like that.”

I feel like I’ve heard this type of story a hundred times. You or a friend go to the doctor and something is wrong, and the doctor never gets to the bottom of it. Why? In many cases, I think the reason is because some doctors fail to listen or ask questions. They’re on a time schedule. They do a quick assessment. They make assumptions.

Though I’ve had some great doctors in my life, I’ve been disappointed just as many or more times. One of these visits was when I was fifteen. I had my wisdom teeth out. They weren’t quite in yet, but because of previous braces,it was suggested to remove the roots of the wisdom teeth before they formed, so my other teeth wouldn’t become crooked again. And despite how many times I went to the orthopedic surgeon to tell him I was in severe pain and something wasn’t right, he disregarded it, handing me heavier pain medications. He gave me codeine. The codeine didn’t help much, the pain was so severe. Finally, on my last visit, the surgeon realized I had an infection.  After a few days of antibiotics, my pain was gone! Had I simply believed the doctor was right and my pain was just a result of recovery, what could have happened if the infection had lasted longer?

For my friend, I knew she had gone in to see the doctor because her knees were bothering her. She’s a dancer and her dancing is very hard on her knees. I asked her how much ibuprofen she was taking each day. Knowing painkillers don’t work that great when you’re having chronic severe pain, I knew it was highly likely she was taking too much. It turned out she was taking over the maximum dosage. If the doctor had taken the time to really listen to his patient and ask questions, he would have figured this out. Instead, a patient with ill advice will continue taking the high dose of ibuprofen, further damaging her liver and her intestinal tract, later to find other chronic diseases up ahead.

I feel like our health system severely lacks preventative care. Without a doctor’s listening ear, problems go on unnoticed and as a result health care rises because ailments continue to spike. And when someone gets an ailment such as damaged intestines due to too much NSAIDs usage, autoimmune diseases like “leaky gut syndrome”, IBS, Crohn’s, Lupus, Fibromialgia and RA might be the result. Then what comes next? More painkillers, steroids and other various drugs that will further damage the body, causing more and more harm.

I’m not a doctor, so I can’t say what’s best. And because everyone’s chemistry is different, it’s hard to say how some people will react. But I do think that other choices are out there before you hit the drugs. Exhausting those choices first, in my opinion, is your best bet. For my friend, I can think of a few options off the top of my head that could help. Strengthening the muscles around the knee offer as a natural knee brace. I would suggest that she stops the painful movements in her dance class for a while and instead, works on reinforcing the muscles surrounding her knee. I would make this physical therapy a top priority and a continuous effort. Next, I would use a cream that’s great for the knees and will help bring down the inflammation. And when she’s resting at home and in pain, I would recommend that she elevates her leg and wraps an ace bandage around her knee to help push the swelling out.

Beyond that, of course there’s supplements that will reduce the swelling in her knee instead of using painkillers. For her liver, I would suggest considering three supplements that help the liver function. That I know of, those are milk thistle, N-acetylcysteine and SAM-e. SAM-e is particularly great because it would help her knee and her liver. N-acetylcysteine is a little more complicated because it pulls out toxic metals and requires additional vitamin C. Taking a supplement like Ultra Antioxidant from pro-health would cover the basics of what’s involved with this supplement in particular.

In the end, it’s important that you trust your doctor. If your doctor is not listening and not asking questions, life is too short…find one who will!

The Ripple Effect

Getting older is tough enough.  Watching your body change as you get older is a gradual process.  A gray hair here, a gray hair there.  A wrinkle here, a wrinkle there.  As the days move forward, at least you know everyone else is in the same boat.

But getting older with an autoimmune disease, in my opinion, is far more difficult.  You plunge head first into a scary world, and you imagine this must be what it feels like to be 90.  Losing abilities, taking pills daily, watching your body change at a very fast rate can be not only frustrating and painful, but detrimental to your mental health.  Each day is different.  You might notice new rashes on your skin, new bumps or bruises, or another task left uncompleted because of lost ability or weakness.  I remember clumps of hair falling out in the shower.  I felt sort of like a cancer patient.  The kinds of things you go through are just not meant for daily conversations.  So you feel alone and trapped in your own skin.

Luckily however, I have been able to get my Rheumatoid Arthritis under control with alternative medications that don’t have side effects.  My hair no longer falls out in clumps.  I rarely get new bumps or rashes.  And I am able and agile enough to once again live a full and productive life.

But that’s not why I’m writing this post.  This post is about the unknown and that gripping fear that although everything seems ok at the moment, the likelihood that more problems are in your future, especially as you grow older, is likely to occur.  And don’t say that I’m living life with a glass half-empty.  I am optimistic that whatever arises, I’ll be able to handle and possibly even get control of by taking more supplements.  But my point is, is that it is likely that if you get one autoimmune disease, there may be more to follow.

My first autoimmune disease was a skin disease.  It’s located on my shins and called Necrobiosis Lipoidica.  At first I was told it was Granuloma Annulare and the doctor showed me a picture of a woman with it all over her body.  This conclusion of course, was horrifying to me because for the next five years, I worried I’d be covered with shiny, scaly scars.  Fortunately, the doctor was wrong and instead, I was diagnosed later with Necrobiosis Lipoidica, which is a skin disease that only affects the shins.  Both skin diseases usually accompany diabetes, so the doctor was confused why not only did I not have diabetes, but it did not run in my family.  Later, in my research of Rheumatoid Arthritis, I learned that Necrobiosis Lipoidica sometimes is associated with RA.  Around those same years that I developed this, I also got pleurisy, which is a painful inflammation of the lining between your lungs and your ribs.  Antibiotics seemed to clear it up and it was probably a result of living in such polluted air.  Pleurisy, however,  is a frequent symptom of Lupus and it sometimes accompanies RA.  Fast forward four years and I’m diagnosed with Hypothyroidism.  My gynecologist caught it, otherwise this would have probably gone on for years without me realizing.  Then seven years later I was diagnosed with RA.

The reality is, most people with an autoimmune disease like RA or Lupus, usually have many more autoimmune diseases.  It can be a ripple effect.  Whether it’s the diseases themselves, the lifestyles that accompany the diseases, or the medications, more and more seem to pile up.  I’m glad to be on alternative medications because I know I’m taking things that might just possibly reverse the disease process.  But there’s always that side of me, that terrified side, like a voice in the back of my head that says, “What’s next?”  This time at least, I know that I’m doing all that I can do.  I’m armed with knowledge.  I’m taking supplements that improve my health.  I’m eating better, sleeping more and consuming fewer toxins.  There’s nothing more that we can do besides enjoy every day for what it is, knowing life is uncertain, so whatever each day may bring, let it be the best that it can be.

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