A reduction in symptoms

Now that it is nearly a decade later, I have to share what has worked for my Rheumatoid Arthritis.

I used to take a lot of supplements to decrease inflammation. Occasionally I took prednisone when things got really bad, but I would try to keep this for emergencies only.

One year, I had an opportunity to sleep-in on a regular basis. I slept probably 9 to 10 hour days for the full year. I still went to work, but it was something I had worked out with my employer and I wanted to test a theory.

My theory was that sleep would eventually heal me.

And for the most part it did. I still have to take it easy, get enough stress and not overdo anything. I can’t eat a bowl of pasta unless I’ve come to terms with myself that I’ll deal with the extra inflammation it will bring on. But that’s extra inflammation, it isn’t extreme inflammation and disability. I certainly won’t eat pasta for a week or else I might get myself into trouble. I have to get rest, take naps, whatever I have to do to catch up on sleep. If I don’t I’ll most likely suffer some consequences. But I no longer have Prednisone in my cabinet. I no longer take oodles of supplements like I once did. I no longer need to take baking soda and epson salt baths to feel as good as I do. I do of course try and eat healthy, meaning, the more organic vegetables I can get in me, the better I feel.

But I can’t just get a weight trainer and start weight training my body, or training for a marathon. I stepped onto the elliptical the other day. I did a 30 minute gentle workout. I have been walking for an hour every day for two years. But the elliptical works out new muscles, so I knew to be careful.

Sure enough, even though I made sure to keep it gentle, that evening I woke up in the middle of the night to get a glass of water and I realized I couldn’t walk on one foot. The tendon in my left foot was so inflamed that I realized I would have to go without getting a glass of water. My husband was asleep. I took one last sip of what I had left in my glass and did my best to fall back asleep.

The next morning, my ankle had healed some and I walked to go get some water. And by the end of that day I was fine. But I certainly knew I couldn’t get back on the elliptical for probably a few days just in case.

I once got a trainer at the gym. I don’t know what I was thinking, except that his ongoing sales pitch had worked. I was especially healthy so I figured I could handle it. I told him about my health issues and to take it easy on me and that I couldn’t work out in the sun. But although he said he would be gentle, he didn’t truly listen and I didn’t put my foot down. After that I canceled. I was out of the gym for three months as a result of too much too fast.

Sleep is my go-to whenever I’m inflamed. I have a second go-to as well.

But that is for the next post.

Best of luck to you all in these trying times.

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In Case You Think I’ve fallen Off the Face of the Earth……..

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!

Earth Angels: Part Two (Pay it Forward)

One morning I was running late for work, per usual.  My gas gauge was noticeably low, but I didn’t stop for gas, knowing that stopping would add to my tardiness.  I guess you can say I like to live on the edge, or maybe it’s a genetic thing.

See, growing up, my father was notorious for letting his car run out of gas–while his kids were still in it.  It was so bad in fact, that there was this one spot on the road that we knew if we got past it, we were somehow in the clear.  We knew the spot well because we had walked the few miles from there to the gas station a few times.  Perhaps this was a game.   I don’t know why he would do this exactly.  He claimed the gas gauge was broken.  In fact, there were other places at other times, in other areas of California that we also ran out of gas, but that’s another story.  I think  he liked to live on the edge, or maybe it was something else, maybe his reasoning skills are broken.  And Dad, if you’re reading this, you know it’s true.  Back in those days, you could hitch-hike to a certain extent without the same kind of worries that you have today.  Needless to say, I grew up thinking running out of gas was sort of fun?  Now I know that it’s terrible for your car, ruining pipes and so forth and being in L.A., it’s definitely dangerous.  So let’s just say that I don’t wait until the last-minute any longer.

I had run out of gas a long time ago, around the age of 18.  The steering wheel had locked up, something I didn’t know about at that time.  It was scary, but I was lucky because a police officer had seen me, pulled over, and literally pushed my car with his car, around the corner to a gas station.  Was he another Earth Angel?

So here I was, driving to work, with a very low gas tank.  Traffic had come to a stand-still and I started to really worry.  I was on the freeway and I really didn’t know for sure if I was going to make it to the next exit.  Sitting there, in traffic, not moving, was lowering my chances of EVER making it to work.  It was a hot day, but I knew better than to run the air conditioning or else I definitely wouldn’t make it off the freeway.

I finally made it to my exit and my gas tank still hadn’t hit the R yet.  I was convinced that I could make it all the way to work as long as it didn’t hit the R.  That was, until that familiar feeling in my steering wheel hit.  Right as it did, it dawned on me that I had just passed a gas station.  I immediately flipped a u-turn, struggling with my steering wheel.  It just so happened that there were no cars on the street at that moment when I did this, and this is L.A. in the Wilshire district, making it a strange serendipitous coincidence.

As my car struggled on its last fumes, I attempted to roll up to a gas pump.  This was going slightly uphill in the drive-way.  I realized quickly that I wasn’t totally going to make it.  As my car started to drift backwards, I immediately pulled the emergency brake to stop it from rolling back into the street.  I had at least made it to the gas station.  This was a true miracle.

I was feeling REALLY lucky at this point.   I had just ran out of gas and for the life of me, I had no idea how I had been so lucky that I was able to literally roll right into a gas station.  I am a glass is half-full kind of person, so I knew no matter what, I was going to feel lucky for the rest of the day.  I felt like someone was watching over me.  What if I had run out of gas on the freeway?  I was in a fairly safe neighborhood in L.A.  There was nothing that could keep me from smiling for the rest of the day.

Stupidly, I was un-prepared though.  I didn’t know my debit card number by heart (still) and the gas station didn’t take credit cards.  I didn’t have any cash on me and I couldn’t call anyone because my phone was dead.  I didn’t have any change on me, not even a penny.  At this point I was feeling like quite the idiot.  I didn’t worry.  I knew if I had to, I could walk to work, even if I was in heels…… it was only a couple of miles away.   I knew there was a solution, I just didn’t know what it was going to be quite yet.  The guy at the gas station wasn’t going to help me, nor was anyone in line, so I started walking back to my car, wondering what I was going to do next.

Luckily an Earth Angel came to my rescue.  He asked me what happened to my car, (as he was getting gas) and I explained that I was an idiot and ran out of gas and that I’d use my credit card but they only take debit and I’d call someone for help but my phone was dead.  I told him not to worry, that I would figure something out.  He told me to hold on.  I didn’t know what he meant but I said ok.  And then he asked me to hold the gas pump.  “Don’t put the pump back,” he said.  He asked for my keys and so I gave my keys to him.  I wasn’t worried about him stealing my car.  It didn’t have any gas and his car was far nicer than mine, how would he drive two?  So I waited, wondering what his plan was.

He got in my car, took the break off and with the help of another person, (another Earth Angel) who kindly jumped in, pushed my car up to the pump.  He put $2 worth of gas in my car and told me where a nearby gas station was that took credit cards.  I thanked him profusely and said, “I wish there was something I could give to you.”  He said in return, “Just pay it forward.”

He was right.  That kind of kindness comes from somewhere unexplainable, somewhere so sweet and true, it gives me goosebumps.  I don’t know that I’ve paid it forward yet, not quite to that extreme, but I hope to be as kind, to be as wonderful as he and someday be someone else’s Earth Angel.

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!  :)