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!

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!

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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