Baby Steps

For those that read my more recent posts, I’m trying to get back into posting. I’m hesitant to give health advice ever since I was harassed by a supplement company.

To be honest, I don’t want to give health advice exactly… I want to just encourage each and every one of you to take it easy. Life is hard! We deserve to have a good life, all of us, don’t we?

I know how difficult it is to eat healthy, to breathe in and out, to go about your day with a smile on your face. I once had an acupuncturist tell me that I needed to cry.

He said, “Watch a sad movie. Let it all out. Do it often.”

And here is what I learned about feeling better. Crying is detoxing. The more we sleep, weep, sweat, pee, poop, breathe and laugh, we get better. Between toxins and emotions we all really need a good detox and we need it all the time. Beets for instance, are really great for detoxing our liver. Sleep detoxes our brains. Some chemicals I’ve heard, can only depart our bodies through sweat.

So give yourself a break. This stuff isn’t easy. There is no one “cure all” out there. But lots of baby steps along the way will get you where you’re going. Replenish what you’re missing. I’m sure you’re missing something! Most people in the United States are missing adequate amounts of iodine and magnesium for starters. But what else? How about B vitamins, Vitamin D, Vitamin C, etc. And how about probiotics? We pasteurize everything, cook everything, and forget that we are all just containers of live bacteria. We need bacteria to live, give us energy, fight viruses and help us lose weight. We have more bacteria in our bodies than we do human cells. In fact, bacteria tell our cells how to behave. They can even turn genes on and off. SO let’s get some probiotics in our lives…and let them have variety because variety is the spice of life! But try to do as much as you can with whole foods rather than supplements because this is how we stay balanced. For instance, an oyster has a unique amount of selenium and zinc but if you take it in supplement form, you might throw yourself off balance. Food naturally keeps this unique balance, so if you can, find the things you’re missing with food. Bone broth is great because it gives our bones all the things we’re probably missing in our bones! You’ll be pleased to see your skin loves it too. But don’t do any big change fast… Our bodies can’t handle that. Our livers can’t take it. Our kidneys need to take it easy. We need to allow ourselves to do little changes over time.

Baby steps. Anything more than that and we might not get there… but if we can allow ourselves to take the smallest steps, then maybe just maybe one day we’ll be somewhere delightfully unexpected, like in a body that’s finally taking it easy.

Gentle hugs to you all,

Sarah May

It’s nearly a decade later.

Dear readers, this will be an unusual post.

For those that have followed this blog, you noticed at first I didn’t write much towards the end, and then I didn’t write at all. But I never could explain why. Now I’m about to.

I’m sure I’ve forgotten how to write in a blog too, but hopefully this is like riding a bike.

First, I am still alive, still well, and I’m sorry I haven’t logged into my site until now.

A post I had written long ago caused quite a stir. So much of a stir that, a big stack of papers came in my mail, threatening to sue me. At first, I did not worry. I considered what I had to say an act of freedom of speech and that this giant company wouldn’t get very far. But the reality was, I was broke, and I was trying desperately to manage my career and manage my autoimmune disease, and I was in denial. The blog was a place to decompress, but for the first time, it added to undue stress in my life.

Over that year, new paperwork came, threatening me more and more. Calls came in. “Take down your blog” it read. But I did nothing and hoped they could do nothing to me.

A year later, a bigger stack of brand new paperwork came. This time, a new lawyer put their name to it, and this time they threatened they would put me in jail for giving advice on my blog. What? Can they really put me in jail?

I took the paperwork over to someone within my network, as a one time favor to ask for advice.

Yes they could sue me, of course, anyone can sue anyone for anything. But she didn’t think they would win and she didn’t think they could put me in jail because I occasionally gave advice. Still I felt scared and confused. All I wanted to do was be well. I didn’t have money for a lawyer and I was only starting to get control of my autoimmune disease and my career. I felt morally responsible to keep my blog visible, though I was told to take it down. To compromise, I took the original post down that caused so much trouble and stopped allowing comments along with responding to them. All of my writing energy disappeared in an instant.

Without even trying, a year or so passed. Every time I wanted to write, I stopped myself mid-sentence. And then Life happened. Stressful life changes impacted me deeply.

Eventually, I came back to my blog and the accounts associated with it, and realized, I didn’t know my passwords anymore. I didn’t know my usernames because I had changed everything to become “forgotten”. I had let emails expire. I didn’t connect back up emails to send “reset password” info to. There was no one to call. I couldn’t find any of the information I needed to get help. My twitter account was hacked and some other person or bot using my name took it for political propaganda. With all control lost, it seemed the world wanted me to stop writing and just hide.

And then yesterday happened.

I got an email that said one of my emails would be closed if I didn’t log in. I had thought that email no longer existed. I reset the password to the long forgotten email and wondered if somewhere in my emails, can I find my account # or other valid info for WordPress? I had been seaching for years and I was pretty sure I had searched here before.

But sometimes things change because maybe stars aline? I reset the search filter because something was wrong with it. Perhaps that’s why I couldn’t find this info before? I searched for WordPress. Ooodles of WordPress emails come up so I hit the arrow key for ten minutes or so until I got to the very first email that was ever sent to me from WordPress. And that’s all I ever needed.

Now that I have access again to this blog, I’m not even sure what to do with it. Should I even write at all? How much should I share? Is it possible to be anonymous? Do I ever give advice again?

It’s only been a day and I figure I’ll just take baby steps. I’ll figure things out one day at a time. I’m happy to at least now, have a choice.

I’ve decided to sign with the name, Sarah May, because she is the old me, long before I wrote this blog. She’s symbolic because RA once had ahold of me, and it no longer does. It’s still here, but it’s not invading my thoughts or preventing me from living. It still however, prevents me from a cartwheel, and I’m hoping in time I’ll change that too.

To my readers that never heard from me again, I’m truly sorry it happened, and any grief it has caused you.

Many gentle virtual hugs to you all,

Sarah May

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.

Health before Wealth

Recently I was talking to my mom about the newest thing I’m thinking of trying. It’s suppose to balance the pH of your water, along with add electrolytes and minerals. (see link) She asked, “How can you afford to take all of these things?”

The truth is, financially I can’t really. I’m stretched as thin as a rubber band, ready to break at any moment. These are hard, economical times.

On the flipside, can I afford to NOT keep trying new therapies in hope that remission will soon be giving me a high five at my doorstep? Sure I’m feeling great in a sense that I’m completely functional with RA. But as long as I’m not in remission, there’s still damage being done. I’m thinking long term. It’s the same as keeping up on your teeth cleaning. If you don’t, you could end up with some serious tooth decay, along with heart conditions and toxins invading your body. What kind of damage is happening to my hands long term? And there’s no guarantee with conventional drugs either that you can skip out on the deformities. Just clue into a recent post and you’ll see that hand deformity is just like the disease itself in that it varies from person to person. So you have to do your best to get inflammation under control no matter what you’re taking. Even if you’re taking DMARD’s and Biologics, you have to consider that eating right and exercising would be a wise, helpful choice since these medications can raise cancer risks, among other things. Our bodies are long term investments.

From time to time expense comes up as a topic in my RA support group. The idea of going organic, buying fresh food vs packaged, and taking supplements that can improve overall health seems too expensive to some. Most people embrace the burden of the extra costs, but a few need encouragement that long term, investing in the right foods and supplements will save money. This is particularly tough when a lot of us, including myself are living paycheck to paycheck. What you pay now at the grocery mart will help determine the costs of your future medical bills. Just like I am spending money on supplements, rather than movies or haircuts, I’m figuring that the money I spend now could make for a less expensive health bill in the future. Not only that, but the better I feel and the more that I can do, the better chance I have at making more money in the future, simply because I’ll be able to keep up a career and hopefully advance in that career.

So my motto is, when you’re trying to decide what to eat for lunch and your choice is a hamburger on the doller menu or that organic salad with grilled, free range chicken that were raised without antibiotics….. choose the latter. Because in my opinion, you’re going to be paying for your health in one way or another.

Trusting Your Doctor

I was speaking with a friend who just got results from her doctor, saying her liver enzymes were raised. The doctor advised her not to drink any alcohol. I immediately asked, “Are you taking Ibuprofen?” I knew her knee had been hurting her, and she wasn’t one to avoid over the counter medications. Her response was, “but my doctor said Ibuprofen would not raise my enzymes like that.”

I feel like I’ve heard this type of story a hundred times. You or a friend go to the doctor and something is wrong, and the doctor never gets to the bottom of it. Why? In many cases, I think the reason is because some doctors fail to listen or ask questions. They’re on a time schedule. They do a quick assessment. They make assumptions.

Though I’ve had some great doctors in my life, I’ve been disappointed just as many or more times. One of these visits was when I was fifteen. I had my wisdom teeth out. They weren’t quite in yet, but because of previous braces,it was suggested to remove the roots of the wisdom teeth before they formed, so my other teeth wouldn’t become crooked again. And despite how many times I went to the orthopedic surgeon to tell him I was in severe pain and something wasn’t right, he disregarded it, handing me heavier pain medications. He gave me codeine. The codeine didn’t help much, the pain was so severe. Finally, on my last visit, the surgeon realized I had an infection.  After a few days of antibiotics, my pain was gone! Had I simply believed the doctor was right and my pain was just a result of recovery, what could have happened if the infection had lasted longer?

For my friend, I knew she had gone in to see the doctor because her knees were bothering her. She’s a dancer and her dancing is very hard on her knees. I asked her how much ibuprofen she was taking each day. Knowing painkillers don’t work that great when you’re having chronic severe pain, I knew it was highly likely she was taking too much. It turned out she was taking over the maximum dosage. If the doctor had taken the time to really listen to his patient and ask questions, he would have figured this out. Instead, a patient with ill advice will continue taking the high dose of ibuprofen, further damaging her liver and her intestinal tract, later to find other chronic diseases up ahead.

I feel like our health system severely lacks preventative care. Without a doctor’s listening ear, problems go on unnoticed and as a result health care rises because ailments continue to spike. And when someone gets an ailment such as damaged intestines due to too much NSAIDs usage, autoimmune diseases like “leaky gut syndrome”, IBS, Crohn’s, Lupus, Fibromialgia and RA might be the result. Then what comes next? More painkillers, steroids and other various drugs that will further damage the body, causing more and more harm.

I’m not a doctor, so I can’t say what’s best. And because everyone’s chemistry is different, it’s hard to say how some people will react. But I do think that other choices are out there before you hit the drugs. Exhausting those choices first, in my opinion, is your best bet. For my friend, I can think of a few options off the top of my head that could help. Strengthening the muscles around the knee offer as a natural knee brace. I would suggest that she stops the painful movements in her dance class for a while and instead, works on reinforcing the muscles surrounding her knee. I would make this physical therapy a top priority and a continuous effort. Next, I would use a cream that’s great for the knees and will help bring down the inflammation. And when she’s resting at home and in pain, I would recommend that she elevates her leg and wraps an ace bandage around her knee to help push the swelling out.

Beyond that, of course there’s supplements that will reduce the swelling in her knee instead of using painkillers. For her liver, I would suggest considering three supplements that help the liver function. That I know of, those are milk thistle, N-acetylcysteine and SAM-e. SAM-e is particularly great because it would help her knee and her liver. N-acetylcysteine is a little more complicated because it pulls out toxic metals and requires additional vitamin C. Taking a supplement like Ultra Antioxidant from pro-health would cover the basics of what’s involved with this supplement in particular.

In the end, it’s important that you trust your doctor. If your doctor is not listening and not asking questions, life is too short…find one who will!