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!

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….

I Finally Started Juicing!!

I don’t know why it’s taken me 5 years to start juicing.  It didn’t seem to matter how many times I read or heard how great juicing would be for me. The thought of  buying an expensive juicer, only to clean it daily, and buy ingredients frequently, etc. sounded terrible.  I’m not much of a cook and I am so busy, I just never realized that I could fit it in my lifestyle.

I had been thinking about juicing for some time, but I owe it to a co-worker from Gnomon School of Visual Effects, Paulli, who gave me that kick in the rear to get going.  She said, “What are you waiting for?”  And I realized, I didn’t really have an answer.  No excuse was a good excuse. This was my health I was talking about!  Buying a juicer this month sounded unrealistic, but she was right, no amount of money was worth sacrificing my health.  If this was going to make me better, then seriously, what was I waiting for?

I realized that I could at least try and use my blender.  If it didn’t work, I could buy a juicer, no excuses. I finally took it out of the top cupboard and brought it to work and put it on the counter, the same day that I bought some juicing staples for the week.  I had a few of the ingredients already, like turmeric, cayenne pepper and apple cider vinegar.

I chopped up a few stalks of celery, the entire cucumber, put a spoonful of turmeric, a spoonful of cayenne pepper, a splash of Apple cider vinegar, a splash of carrot juice that has omegas added, a splash of strawberry Kefir, and finally a splash of the green juice blend from Trader Joe’s.  And walla!  Instant juice drink!  The blender is detachable, so whatever I don’t drink, I just put in the fridge and blend again later.  In fact, day old juice tastes even better!  And the cleanup is super easy.  I just rinse out the blender and it’s ready to juice again!
It took me a bit to get used to the flavor, but I’ve actually acquired a taste for it now!  I’m planning on getting more ingredients…like parsley, ginger, almond milk, kale and whatever else I think would be great for reducing inflammation and adding antioxidants to my body.

Maybe it’s too soon to tell but I would swear that I can already feel a difference.  Two pitchers of smoothies later, I really think this is going to take me somewhere great.  It felt as though it was cleaning my body.  My intestinal health has never been great but since having had RA, it’s been extremely poor.  After juicing I felt like my intestines were saying “Hooray!”  Maybe that’s too much information, but I can feel a giant difference.   Thank you Paulli for your encouragement!

Stay tuned and I’ll let you know how this goes!  Please feel free to ask for advice on juicing.  I have some pretty strong opinions as to what you should and should not be drinking!

many hugs,

Sarah

Coming Soon: Supplement Recommendations Condition-Specific

Hello everyone!

Just a reminder that I am not a doctor and please read my Disclaimer on this site.  (just click on the link).  I have started working on pages that I will be putting up soon on condition-specific supplement recommendations.  If you have a disease that you’d like me to put up there specifically, please comment to this post and recommend it!  So far, these are the conditions I have in mind to talk about:

Lupus

Multiple Sclerosis

Psoriasis

Psoratic Arthritis

Pulmonary Fibrosis

Rheumatoid Arthritis

Osteoarthritis

Parkinson’s

Crohn’s

ALS   also known as Leu Gehrig’s Disease

Autism

Thank you for your help and I hope to have this ready for you soon!

Sincerely,

-Sarah Keturah

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))

The Curse of Fibrin

clotting

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:

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:

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.

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