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.

.

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.

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 Curse of Fibrin

If Fibrin didn’t exist, we would bleed to death, literally. But when Fibrin goes awry, it can lead to a host of diseases including Rheumatoid Arthritis, Cystic Fibrosis, Pulmonary Fibrosis, Fibrocystic Breasts, Endometriosis, Fibroids, Thrombosis, Cardiovascular Disease, Liver Cirrhosis, Heart Disease and a host of many other diseases involving inflammation.

When Fibrin works as it should:

“Fibrin (also called Factor Ia) is a fibrous protein involved in the clotting of blood, and is non globular. It is a fibrillar protein that is polymerised to form a “mesh” that forms a hemostatic plug or clot (in conjunction with platelets) over a wound site.”-Wikipedia

When Fibrin is the bad guy:

Rheumatoid Arthritis:

“Recent research has shown that fibrin plays a key role in the inflammatory response and development of rheumatoid arthritis.”-Wikipedia

Scar Tissue:

Not all scar tissue is considered bad necessarily, but when it’s in your organs, it can lead to terrible problems.  And when it’s in your brain, it can lead to Multiple Sclerosis.

The below paragraph says that there are “no direct treatments for elevated levels”, meaning fibrin levels, yet anyone taking serrapeptase or studying alternative medications and diseases and knows about enzymatic therapy knows that you can reduce fibrin levels with certain supplements and can effectively reduce your CRP.  So why are so many doctors in the dark about this?

“Sometimes fibrinogen (the test) is ordered, along with other cardiac risk markers such as C-reactive protein (CRP), to help determine a patient’s overall risk of developing cardiovascular disease. This use of fibrinogen has not gained widespread acceptance though, because there are no direct treatments for elevated levels. However, many doctors feel that fibrinogen measurements give them additional information that may lead them to be more aggressive in treating those risk factors that they can influence (such as cholesterol and HDL).”-www.labtestsonline.org

“Fibrinogen is an acute phase reactant, meaning that fibrinogen concentrations may rise sharply in any condition that causes inflammation or tissue damage. Elevated concentrations of fibrinogen are not specific — they do not tell the doctor the cause or location of the disturbance. Usually these elevations in the fibrinogen blood level are temporary, returning to normal after the underlying condition has been resolved. Elevated levels may be seen with:

• Acute infections
• Cancer
• Coronary heart disease, Myocardial infarction
• Stroke
• Inflammatory disorders (like rheumatoid arthritis and glomerulonephritis)
• Trauma

While fibrinogen levels are elevated, a person’s risk of developing a blood clot may be increased and, over time, they could contribute to an increased risk for developing cardiovascular disease.” –www.labtestsonline.org

If elevated fibrinogen levels are involved in inflammatory disorders, then here is a longer list of inflammatory disorders that would greatly improve with the direct decrease of fibrinogen:

“Abnormalities associated with inflammation comprise a large, officially unrelated group of disorders which underlie a vast variety of human diseases. The immune system is often involved with inflammatory disorders, demonstrated in both allergic reactions and some myopathies, with many immune system disorders resulting in abnormal inflammation. Non-immune diseases with etiological origins in inflammatory processes are thought to include cancer, atherosclerosis, and ischaemic heart disease.^[4]

A large variety of proteins are involved in inflammation, and any one of them is open to a genetic mutation which impairs or otherwise dysregulates the normal function and expression of that protein.

Examples of disorders associated with inflammation include:

• Acne vulgaris
• Asthma
• Autoimmune diseases
• Chronic prostatitis
• Glomerulonephritis
• Hypersensitivities
• Inflammatory bowel diseases
• Pelvic inflammatory disease
• Reperfusion injury
• Rheumatoid arthritis
• Sarcoidosis
• Transplant rejection
• Vasculitis
• Interstitial cystitis

Allergies

An allergic reaction, formally known as type 1 hypersensitivity, is the result of an inappropriate immune response triggering inflammation. A common example is hay fever, which is caused by a hypersensitive response by skin mast cells to allergens. Pre-sensitised mast cells respond by degranulating, releasing vasoactive chemicals such as histamine. These chemicals propagate an excessive inflammatory response characterised by blood vessel dilation, production of pro-inflammatory molecules, cytokine release, and recruitment of leukocytes.^[4] Severe inflammatory response may mature into a systemic response known as anaphylaxis.

Other hypersensitivity reactions (type 2 and type 3) are mediated by antibody reactions and induce inflammation by attracting leukocytes which damage surrounding tissue.^[4]

Myopathies

Inflammatory myopathies are caused by the immune system inappropriately attacking components of muscle, leading to signs of muscle inflammation. They may occur in conjunction with other immune disorders, such as systemic sclerosis, and include dermatomyositis, polymyositis, and inclusion body myositis.^[4]

Leukocyte defects

Due to the central role of leukocytes in the development and propagation of inflammation, defects in leukocyte function often result in a decreased capacity for inflammatory defense with subsequent vulnerability to infection.^[4] Dysfunctional leukocytes may be unable to correctly bind to blood vessels due to surface receptor mutations, digest bacteria (Chediak-Higashi syndrome), or produce microbicides (chronic granulomatous disease). Additionally, diseases affecting the bone marrow may result in abnormal or few leukocytes.

Pharmacological

Certain drugs or exogenic chemical compounds are known to affect inflammation. Vitamin A deficiency causes an increase in inflammatory responses,^[8] and anti-inflammatory drugs work specifically by inhibiting normal inflammatory components.

Cancer

Inflammation orchestrates the microenvironment around tumours, contributing to proliferation, survival and migration. Cancer cells use selectins, chemokines and their receptors for invasion, migration and metastasis.^[9] On the other hand, many cells of the immune system contribute to cancer immunology, suppressing cancer.”-wikipedia

If you’re not convinced by wikipedia that too much fibrin is bad news, plenty of other good sources for information are out there, including pubmed.  Just do a quick google search on fibrin.

Hodgkin’s Disease: “Fibrin deposits were observed in the involved lymph nodes and/or spleens of 15 patients with Hodgkin’s disease by specific immunofluorescence and by electron microscopy. Two basic patterns of fibrin deposition were observed: 1) intercellular deposits, chiefly associated with nonneoplastic-appearing lymphoid cells and 2) deposits associated with the collagen fibers of young connective tissue. In addition, coarse fibrin deposits were observed in areas of necrosis, presumably a non-specific finding. Fibronectin was also observed in intercellular areas, but staining was less intense than for fibrin. Fibrin deposits were also observed in 3 of 6 cases of non-Hodgkin’s lymphoma, indicating that the finding is not an exclusive feature of Hodgkin’s disease. The pathogenesis and possible significance of fibrin deposition in Hodgkin’s disease are related to earlier observations of activation of the coagulation system on neoplasia and cell-mediated immunity and to the possible role of fibrin, fibronectin, and their breakdown products in angiogenesis and fibroplasia.”-pubmed

Multiple Sclerosis: “Tissue plasminogen activator (tPA), a neuronal as well as the key fibrinolytic enzyme, is found concentrated on demyelinated axons in multiple sclerosis lesions together with fibrin(ogen) deposits. The decreased tPA activity in normal-appearing white and grey matter and lesions of multiple sclerosis is reflected in diminished fibrinolysis as measured by a clot lysis assay. Nonetheless, peptide products of fibrin, including D-dimer, accumulate on demyelinated axons-the result of fibrinogen entry through a compromised blood-brain barrier (BBB). Analysis of tissue samples on reducing and non-reducing polyacrylamide gels demonstrates complexes of tPA with plasminogen activator inhibitor-1 (PAI-1) but not with neuroserpin, a tPA-specific inhibitor concentrated in grey matter. As total tPA protein remains unchanged in acute lesions and the concentration of PAI-1 rises several fold, complex formation is a probable cause of the impaired fibrinolysis. Although the tPA-plasmin cascade promotes neurodegeneration in excitotoxin-induced neuronal death, in inflammatory conditions with BBB disruption it has been demonstrated to have a protective role in removing fibrin, which exacerbates axonal injury. The impaired fibrinolytic capacity resulting from increased PAI-1 synthesis and complex formation with tPA, which is detectable prior to lesion formation, therefore has the potential to contribute to axonal damage in multiple sclerosis.”-pubmed

Since most of us are never ordered a fibrinogen test from the doctor, then my best assumption is that any tests that show an elevation of inflammation, would therefore mean that there is too much fibrin in the blood.  As you can see, too much fibrin results in inflammation and can lead to disease.  The only therapies that I know of that reduce fibrin are enzymatic therapies, which is why I take serrapeptase.   I prefer brands that are enterically coated.  Feel free to share your fibrin story.