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

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!

The Blame Game

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

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

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

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

That was Saturday.

Sunday was spent nursing my hangover.

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

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

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

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

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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