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!

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!  :)

The Sting of Good Intentions

As with any disease, RA can be frustrating. A general work day for me consists of sitting at my desk. The consequences of this for RA means stiffness, ankle swelling, feet swelling, hip pain, etc. etc. The more you sit still, often it makes the stiffness and pain of RA an even bigger problem.

On the flip-side, exercising can be tricky. RA has fun traveling around the body, making parts swell unexpectedly. Everything from severe sharp pains, to a dull ache, to something in between can be a regular day for anyone with RA. But because it varies from person to person, from day to day and from minute to minute, there’s just no telling. Complaining isn’t something I normally do because at least I wasn’t affected with RA until I was 30. The reality is, RA can affect babies, and the result of that can even lead to blindness….but that’s a whole other topic. Sorry to be a downer but reality bites, and to not know that RA can affect children isn’t right. Knowledge is power, because with knowledge, at least then, we can work on solutions. But anyway, back to my story.

So my intention today was simply to get some exercise. It is my daily goal to exercise, even though I might not fulfill it. I took my normal long walk on a beautiful late sunny afternoon down a gorgeous street where homes leave me feeling breathless.  I like to daydream that one day I’ll be living in a beautiful house rather than my one bedroom apartment. My right foot was bothering me again as it has these past couple of days. Rather than babying it, which could lead to more stiffness or better recovery, it’s too hard to say, I decided walking was the answer. My body needed circulation, I needed the sunshine and the breeze, along with the spiritual feeling that I get on these types of walks. Only today I was limping. Limping I did, trying to take the pressure off my right foot, but flexing nonetheless, hoping this could help the stiffness and ease the swelling. I pushed through, even though over time it got worse. My walk is about four miles I’m guessing, but I really don’t know. I hit my two mile spot and turned around. I was catching up on my Sunday calls when suddenly I felt a sharp sting on my left foot.

Thinking it was nothing but a shrub or stick briefly poking me, I think I ignored it for half a second, concentrating on conversation. But when the piercing sting kept on, I heard myself say out loud, “Ow! OW! OW!” I looked down and saw a yellow hornet furiously stinging my left ankle. I brushed it off with a heavy hand, since that’s what it took to get it off of me.

“Dang it,” I said. “A hornet just bit me!”

My friend asked, “Are you ok?”

I said, “yes but I’ve never been bitten by one. Hopefully my reaction to it will be fine.”

“Do you need to call someone?” she asked.

I said, “No, there’s no one I can call.”

She said, “Well I hope you aren’t too far from home.”

I said, “Oh a ways, but hopefully I’ll be fine.”

We continued on our conversation and I ignored the throbbing sting. I was somewhat surprised at how easy it was to ignore the constant stinging where the hornet had stung me over and over. I would have preferred it sting my right foot, that way I could limp more easily. Now both feet hurt to walk. I took off my left shoe because the stings were right at the edge of my shoe and it was rubbing. Then I sort of hobbled home, putting more pressure on my left foot than right because my right foot was killing me and stepping on my left wasn’t making the stinging pain better or worse.

When I got to my apartment complex, I had a long talk with a neighbor who’s suffering from psoriatic arthritis. She’s had psoriatic arthritis for less than a year but she has two fingers that are permanently disfigured due to inflammation shortening the tendons. She asked about my foot, since I was carrying my shoe. I told her the story and said I wished it had been the other foot, but that I was fine.  Her fingers gave me another good reality check, that my situation wasn’t all that bad, even though honestly, I wasn’t feeling sorry for myself, just annoyed that my right foot was hurting more than the hornet sting.

That evening, I tried to relax over dinner and tv. My husband was coming home from a friend’s house. The surprise was that the hornet stings barely bugged me. (Pun intentional) Sure it hurt and wasn’t fun, but compared to RA, it was nothing. So I just wanted to say that if you’ve ever wondered what hurst more, a sting from a f lying insect or RA, my vote is RA. I’ll take a sting any day, or every day if RA would just go away.