Coping with Writer’s Block

Image courtesy of authorlorilotto.wordpress.com

For months I found myself not even being able to look at my blog, or visualize writing at all.  I started to wonder if I still had it in me.  Knowing that I’ve persevered through Rheumatoid Arthritis, I figured, why not apply some of those techniques I learned from coping with the disease to my inability to write?  This is what I came up with:

First:  Research

Reading on the internet is one of my favorite things.  It’s easy to jump from one article to another, everything from asparagus and hangovers to Parkinson’s cures.  Please type in asparagus and hangovers and you’ll find your next go-to after-party treat…pickled asparagus are the easiest to keep in your cupboard btw!  I even love to read those trashy news articles about what stars are wearing, what they’re doing and all the comments that follow.  Why we call it news, I have no idea.  I read forums, blogs, and whatever else strikes my fancy.  I don’t have any real approach to my reading.  I’ll start at one article…like perhaps I have neck pain, and that will lead to something else and then something else, and yet something else again, and suddenly I’m on who dumped who and the worst dressed or some crazy bacterium that’s taking over the nation.  How did I get here?  That’s what a road block is all about, figuring out how to get out of that sticky muck.  Research was the only source that I could think of that would pull me out.   I couldn’t write, not for the life of me.  So I took a road trip, and began my research on “Writer’s block,” and found myself writing again.  Do you remember “clusters”?  Well I did it.  Remember all those writing tools we learned when we were kids?  Those tools got me started yet again.  Wikipedia, you are the best!

I realized, I hadn’t done this in a while, this wordpress thing.  I grabbed a piece of paper, I wrote down “Block” and just like you learned to do in school too many years ago to mention, I engaged in “clustering”.  First circle, “Block”-stone-brick-wall-lego–Writer’s Brain Fart-In the Fog-Stumbling Block.  Then I realized Stumbling Block was good, while Writer’s Block was bad.  That’s a strange one isn’t it?

Then I figured, enough of that…it’s time for free writing.  And here I am, writing whatever comes to mind.  So far, it’s quite scary…but maybe that’s because so much has changed in my life lately.  Maybe I didn’t want to reveal too much of myself.  Maybe I was afraid of not what the reader would discover but what I would discover.

I have been going through some really tough times.  Quite honestly, I did take to journaling before I took to blogging these last few weeks.  I didn’t do much of it, but in the wee hours of the night, when there was no one to call and cry to or ask ponderous questions, I wrote.  And when the next night would come and I’d find myself destroyed with sadness, every cell of my being completely swollen in emotional pain, I would read what I wrote the night before and then write again.  I would find, over and over again in this process that I lived, despite the pain and could move forward, in the smallest increments as each day passed.

I’m still in emotional pain and perhaps sometime I will let you know more about it….  but for now, just talking about that pain is all that I can do.  I know my pain isn’t going to go away anytime soon, and so I have looked to it a little differently than I did before, before it takes over.  Perhaps having RA has given me the tools of coping with pain and NOT expecting it to go away anytime soon.  Rather, learning new ways of coping is the best that you can do.

So what’s up next?  Well hopefully I’m going to be writing to you about what’s going on in my life.  A friend of mine just the other day told me the article I posted wasn’t good.  It was sugar coated, it was 2 buck chuck, it was muck. I was holding back.  I was afraid to reveal again the real me.  It’s like getting into an accident and fearing the road or the building, or whatever it was that was keeping you from putting one step in front of the other.  There is a lot going on with me, and no need to sugar coat things.  I hope in the days that follow that you get to know me again, but in a different way, in a way that I am learning to get to know myself.  One day at a time.

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!  :)

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!

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.

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!

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