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….

Help Pharmaceutical companies learn about you!

Whether you’re taking pharmaceutical drugs, or alternative medications, be part of a survey so they can get a better idea of what people need.

Centocor Ortho Biotech and UCB Pharmaceuticals is looking into researching two specific demographics of RA sufferers. The first group is for people who are using IV therapy and the second group is for people who are not using IV / injection treatment and are not using biologic meds.  Take this quick and easy survey if you’d like to be part of research.  It will only take a few minutes, I promise!  ((CLICK HERE))

Toxic People

It could be your co-worker, a childhood friend, your mother, or your husband. But at least with your mother and your husband, you’re willing to bend a little to make things work. Toxic people are hard to avoid. That bully you remember in junior high, that blind date that was high on cocaine and drove like a maniac, or that angry boss that curses at you.

Having an auto-immune disease however, puts things in perspective. You realize that you hate feeling sick and whatever you can do to prevent feeling sick, you’ll do it. you realize early on that your disease puts you at a new vulnerable level. you can no longer tolerate that angry boss just because you have to. In doing so, you will have more flares and increase the destruction of your body at a faster rate. You simply can’t “afford” to have him as a boss. And so you leave your job in hopes of finding better surroundings. You realize early on that the friends you had all these years may not even put up with your disease and they might leave you or you might leave them because they are too shallow and consumed with themselves to even care. As time goes on, your group of friends becomes less and less and you avoid stress whenever possible. You learn to make new friends, based on personality only. Are they sweet? Are they kind? If they are, you stick to them like glue and hope that they stick around when you go through a rough patch because you might not come out of your cave for some time.

(due to privacy, I have made a few modifications)

Years ago, I had a co-worker, that over time, I grew to know. In the past, she had rubbed me the wrong way. She made days, weeks even, feel like poison. I am a sensitive person with a sarcastic personality but her personality made me feel raw, like I was chewed up and spit out. On her bad days, she would wear her emotions on her sleeve and if you approached her, you would feel her anger penetrate your soul. I learned to tread lightly and not approach her for any reason, unless she was in a good mood. Sometimes I was wrong, and I’d regret having walked into her office to grab something I needed. When I was near her, I felt fear.

Over the years I have learned to put things in perspective, and find the sympathy within myself to realize that we’re all human.  I wasn’t raised how she was raised, and I was born with my personality while she was born with hers.  I realized that though she would bite, there was not much that I could do. She cried easily. Her life was hard and I felt for her. Eventually I learned her cues on when to talk to her, what to say and when to say it. It was as if I was a dog and she had trained me, without realizing, to feed her so she wouldn’t bite.

Eventually she changed.  Maybe she saw a psychologist, maybe her life became easier, either way, life on my end became easier. The change was apparent to me. She was happier. Just like she wore her anger on her sleeve, she wore her happiness on her sleeve as well. And it was on those days that I felt like maybe she could be a friend. I stopped fearing her and started calling her on long walks on the weekends to see how she was doing. Talks turned into long conversations and soon I had completely forgotten that I had ever been afraid of her.

Until one day.  I had been invited to a party at her house. I considered inviting a sweet friend of mine, but I thought twice. I wasn’t sure why I hesitated in asking my friend to join me. Was it because we were still new friends? Was it because her English wasn’t as good as it could be, which made conversations more of a challenge? No. it was none of those reasons. I realized it was because I didn’t want to worry about her. She is sweet and I didn’t want to worry about her feelings. After all, I had my own feelings to worry about.

Honestly though, I hadn’t put two and two together. When I arrived, I was a little surprised that there weren’t that many people. Perhaps the long drive had kept people away. That’s what I rationalized. But there was a part of me that wondered if it were something else.

I thanked her for inviting me over.  I’m guessing she was two sheets to the wind and had become her raunchy, rancid self, which will exclaim profanity, become loud and scary, and flippantly say things that she won’t regret but will leave other people bothered for years. This can be fun if you’re in her corner, like you’re on a live comedic show. But if you’re not, you better prepare yourself for the mind twisting lashings up ahead. Or perhaps I was being too sensitive?

She told her husband, who is subservient by nature, “when you’re a guest at someone’s house, you bring something.” But it was said in a way, if you can imagine, in a harsh, loud, and angry tone, for all to hear. She is the type of person who will say she is joking but yet, there is truth to every joke. I felt like that dog again, cow-towing to her every demand, giving her the reins to be boss, being subservient and putting up with her less than humorous jokes. I had in fact, asked what to bring, which maybe she had forgotten.  Her response on the phone was, “we have so much food and drink, please don’t bring anything!”  It was as if she was the bully in the schoolyard again. Whether it was a joke or not, I immediately turned red and felt like a child, fearful of the bully near me and letting her have her way. I lost my appetite and no longer wanted any food, or anything for that matter. I realized that even though we had come so far as friends in the past months, that her behavior, whether correct or not, made me feel stressed and fearful. She was toxic and I could no longer really be her friend. Maybe her behavior was totally fine for other people, but that didn’t matter. What mattered most was how it made me feel. I have a disease, a very serious disease, and I could no longer afford to feel stress because a person made me feel embarrassed, subservient and upset. At least, not if I didn’t have to.

When I had a chance, I confronted her and she acted as if she had no idea that she had even rubbed me the wrong way. I asked her if she was upset with me.  Her reaction of course was not kind. She got angry and loud enough that others could hear if they were listening and said, “I am sorry you are so sensitive. I am sorry you aren’t having a good time.” And she laughed at the fact that I had been upset ever since her comment. I realized there was no getting through to her so I had few choices. One choice was to make a scene and leave. Well, I wouldn’t make a scene but she would…. Or I could suck it up and try to get us to a place where at least we were getting along. And so I told her, “I’m not upset. I just thought you were upset at me. I was embarrassed.” It was a partial truth so that I could make it through the rest of the night. She told me she wasn’t upset at me and we let it go…or at least, I made it seem like I let it go. In truth, I didn’t let it go. I decided right then and there that I had been mistaken about our friendship. For better or worse, my personality couldn’t handle her personality. Perhaps in the past, I could have handled her harsh sarcasm and almost bi-polar mood swings. But my new self, my protective, ace-bandage wearing, pill taking, supplement researcher, professional, artist self, could not handle her personality in the long-term.

Will I be kind to her or people like her? yes. Will I always tip-toe around people like her? yes. Will I do my best to avoid people like her? yes. Life is too short. I’d rather have the sweetest, kindest, friendliest people around me or none at all. If I were strong and healthy, perhaps I would try my best to work through this. But I’m not. I simply can’t afford to have toxic people in my life.

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!  :)

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