When I was a little kid, my grandfather wanted to teach me to play chess. He lived in Manhattan and I was on Long Island, so he worked it out by making us two chess boards with the grid labeled so that we could play over the phone, a few moves per day.

I never became a master chess player, in fact I don't believe I've beat him even once. But I learned the game and we developed a special bond that I didn't have with any other adults in my life. And the game did open me up to a love of puzzles, problem solving, and play that I still have today. I believe that was the point of it all anyway, much more than the game itself.

Well, recently my grandfather has been diagnosed with terminal cancer, with a rough estimation of six months left of his life. And I live much farther away from him now than I did as a child. His anxiety level has shot through the roof since receiving this news, as I imagine it would for anyone. But he told my mother after kicking my ass mercilessly in a game of backgammon, that playing the game made him forget everything for a while. And I figure that's worth more than all the painkillers in the world.

So I decided to make us a new set up similar to our old one. So when I'm not visiting, we can call each other up and play just a few moves a day. And he can keep on kicking my ass all the way to the end. Just the way it should be.

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Iodine serves a very important purpose to our bodies: It keeps our thyroid working properly. And once upon a time, widespread iodine deficiency caused massive amounts of goiters. Enlarged thyroids causing numerous adverse symptoms. But once we began using iodine in our salt manufacturing process, the goiter problem all but disappeared!

Until recently.

Our iodine intake in America has dropped by 50%, since the iodine once used in the production of flour and salt has been replaced with the cheaper and more dangerous Bromine. In addition, elements like Floride and Chlorine have been introduced to our drinking water which further block the absorption of iodine. This has led to a resurgence of problems once past.

In Psychology Today, Doctor David Brownstein quotes his book about the necessity and misunderstanding of iodine.

“Iodine is the most misunderstood nutrient. After 12 years of practicing medicine, I can say that it is impossible to achieve your optimal health if you do not have adequate iodine levels. I have yet to see any item that is more important for promoting health than iodine.”

That may sound like an overexaggeration, but let's take a look at all the effects an iodine deficiency can have on a persons bodily health.

THYROID SYMPTOMS:

• Goiter, an enlarged thyroid gland that can cause nodules, choking, trouble sleeping or breathing
• Weight gain due to lower metabolism
• Reduced energy/fatigue

CARDIAC SYMPTOMS:

• Higher risk for hypertension and cardiovascular diseases
• Increased risk for stroke
• Heart arrhythmia or weakening of the heart muscle

PREGNANCY SYMPTOMS:

• Higher risk for miscarriage, preterm delivery, and stillbirth
• Higher risk for birth defects or children born with developmental disabilities
• Lower intelligence rates, even in cases of mild iodine deficiency during pregnancy

In addition, it's thought that iodine deficiency can lead to a higher risk of stomach cancer, connected to thyroid under activity. All this combined, it's clear that iodine is an essential part of our dietary needs. So if you look over that list and suspect that you might need more iodine in your diet, how can you get it?

There are supplements out there for just about everything, but as always, the most efficient way to absorb any nutrients are naturally through your diet. These are the foods that contain the best source of iodine:

• Cow dairy products (milk, yogurt, ice cream, cheese)
• Eggs
• Sea salt and iodized table salt
• Saltwater fish
• Shellfish (clam, muscle, oyster, etc)
• Seaweed (kelp, dulce, nori)
• Soy products (milk, soy sauce)

Anything that gives me an excuse to chow down on clams and oysters is alright by me.

In recent months, I've struggled with thyroid issues that have effected everything from my sleep to my depression to my metabolism. As always, I'll explore every possible avenue, but I'm going to try adding more iodine into my diet via kelp, fish, and soy (trying to cut down on the cow dairy).

If you've tried this, or are thinking about trying it, please shoot me a message via twitter or tumblr!

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It may come as no surprise that many people suffering from chronic pain or injury use marijuana (or other recreational drugs) to self medicate when their prescribed treatments just aren't cutting it. But up until recently it has been nearly impossible to test accurately to find out just how effective it is. Patients are unlikely to be truthful with their doctors if they are using it, and the morality and legality of using it in studies is grey and muddled. But now, research is on the rise with more information to come. And it looks like marijuana might have some benefits we never considered before, namely for patients with autoimmune disorders.

In addition to being an unsurprising success for pain management, even better than its legal and more addictive counterparts (see sources 1 and 2), it seems that it also has immunosuppressant benefits for those with autoimmune disorders (such as lupus or rheumatoid arthritis). Cannabinoids (the official term for all versions of the drug) have been showing that they gently suppress the users immune system. Something I've noticed is that many immunosuppressant drugs are too harsh, opening up the user to infection and often times symptoms that far outweigh the ones they started with. In fact, it's become so accepted that many of us joke about it, when really we should have been outraged by the lack of sufficient medications for us.

But with the use of cannabis, there are a lot of health concerns that may or may not be warranted. Now, any stoner will easily go on a rant about hemp and the laundry list of miracles for which marijuana is allegedly responsible. But, from a more realistic standpoint, smoking anything whether it is pot of tobacco or (dare I reference?) lettuce leaves is going to damage your body over time. When dealing with the downsides to tobacco use, most of the issues revolve around the smoke. The behaviors associated with marijuana use are even thought to be only exaggerated by the drug, not placed there (the lazy stoner would be lazy with or without the pot, the pot just makes them extra lazy).

For me, this new information about marijuana rings personally true. I started developing symptoms of lupus when I was just 13 years old, and it wasn't all too long after that that I started smoking marijuana. Now, I'm not going to lie to you and claim I was doing it for pain management. I wasn't, I was a kid trying to have fun. And I did so, recreationally, up until I was 20 years old. At 20 years old, I had my very first panic attack (due to an unrelated issue) and like many people with generalized anxiety disorder, I developed certain triggers for panic attacks. One trigger for me was movie theaters. One of the first terrible panic attacks I ever had was in the opening credits of a film in theaters and from then on, being in a movie theater sparks my anxiety. And another one of those triggers is the smell of marijuana. So I cut it out of my life entirely.

I don't know much about the correlation vs causation here, but within months of me cutting marijuana out of my life, I developed rapid inflammation that made me malnourished. I was injecting myself with b12 and living on a strict diet of vegetables and supplements again, much like I did when I was 14. And in the 5 years to follow, my lupus seems to have progressed more than it had in all my other years combined. In present day, I have quite a few more ailments and issues to deal with than I had just 5 years ago, and my symptoms surface much more frequently.

Of course, lupus is a tricky disease, and I wasn't exactly a part of a double blind study during all of this so it could just as easily be coincidence. And since the only way for me to test my anecdotal hypothesis would be impossible (smoking would yield one helluva panic attack) it seems I'll just have to wait to read more studies as they are done on the subject. But I won't be surprised when Cannabinoids become the latest script to replace steroids. One can only hope.

And hey, when that day comes, I might just try a little harder to get over my anxiety triggers.

Sources:

1. http://www.nature.com/clpt/journal/v91/n6/full/clpt201227a.html

2. http://www.webmd.com/pain-management/news/20100830/marijuana-relieves-chronic-pain-research-show

3. http://lupus.webmd.com/news/20030415/cannabis-may-suppress-immune-system

4. http://www.sciencedirect.com/science/article/pii/0162310994900566

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If I had taken better care of myself when I was younger.

If I hadn't smoked in my 20s.

If I hadn't put off going to the doctor.

But the problem here is that blame is largely ineffective. Some of those things may even be true, but placing the blame accomplishes nothing but negatives. By and large, even if you did contribute to your health problems in some way, most of the chronic illness problems we face are a healthy mixture of genetics meets luck.

So what happens when we get stuck in a loop of blame, trying to pin all our troubles on to someone or some thing? Well in my personal experience with this, a few things happen.

• You procrastinate taking real and important actions to benefit yourself. You focus on the thing or things that you hold responsible for your misfortune and put yourself in a mindset that breeds a false hope – that if you could hold this person or thing responsible, your issues might go away. This is, obviously, not the case at all.
• You flood yourself with anger, frustration, and other negative emotions. Our emotional state affects our physical one, and that flood can and will lead to exacerbated symptoms.
• You avoid doing the one thing that can help you move forward: accepting the situation at face value, and knowing that while you can't change that it happened this way, you CAN change plenty else.

Because we aren't powerless. Every illness comes with varying levels of energy, livability, and hope for cure or remission, but there is always something to be done. Whether it be fighting for future generations, or focusing on our own bucket lists, or searching tirelessly for the right treatment, or just trying to make it to the next happy moment…there's always something we can work on for ourselves.

Recently, I fell victim to the blame mentality. I'm still struggling, which is why I write this out now. When I was in college, around 2007, I started experiencing irregular heart beats, chest pains, shortness of breath, and heart palpitations that were extremely terrifying. When I attempted to find out what was happening I was told by everyone from my mother to ER physicians to my regular doctor that what I was experiencing was anxiety/panic attacks. They were all so adamant and convincing that eventually I accepted this as truth (and grew to self-fulfill the fuck out of that prophecy), that even though I had never before struggled with anxiety or depression, suddenly I was the world's most anxious person to the point that I was hallucinating medical symptoms.

Hmm…well, about that…

It wasn't until just this past year that a doctor actually listened to my concerns and ran the full range of tests to figure out what it was I was experiencing. And he succeeded.

“You aren't crazy, it's very real,” May have been the most validating words ever spoken to me. And then, after thanking him for his unprecedented professionalism and care, the frustration and anger set into my head. I was furious with all the people I came to for help that dismissed me without so much as entertaining my concerns. My concerns were legitimate, and they were ignored.

But even though I still feel like calling them all up and telling them exactly what I was thinking about them in that moment, I have to realize that it won't help or change anything. That doing so will only make me feel guilty for behaving in a way that doesn't suit my character, and won't even do me the service of unburdening me.

I can focus that energy into more productive things, like spreading information about the existence of sexism deeply embedded into the fabric of our health care system, or the massive amounts of misinformation about the correlation between lupus and heart conditions. Hopefully doing so might arm another person with the knowledge to advocate for themselves when faced with the same issues. And that, that might make me feel just a little better.

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Here he is!  With this mustache at the beginning and end of it’s 40 year career!  I cannot thank him enough for doing this for The Chronically Awesome Foundation, and for me.  Everyone who donated, shared, and told friends about this, you are amazing!  It’s truly so exciting and the best Christmas present I could have asked for!  We not only reached the goal, but went over it at $530.00.   Here are some more pictures from the day!

We reached our goal and have officially gone over! Please keep donating, only two more days left before this 40 year old mustache gets slashed!

Donate here: http://www.youcaring.com/other/The-Chronically-Awesome-Mustache-Project/36712

The thought recently occurred to me during orientation at a new hospital.  During my introductions and “why did you choose to work here” exercises, I found I was far from the only person to say something like, “Well, I live with Chronic Illness, which peeked my interest in the field.”

One woman was inspired by those who treated her when she had cancer.  A man who was sick often as a child grew up curious.  And many others in our group of twenty-os-so had similar stories.  So I decided to ask on Tumblr.  I asked how many of my followers with chronic illnesses were considering or were pursuing careers in healthcare.  And my follow-up question was, did they decide this before or after getting diagnosed themselves?

I heard back from a variety of people, pharmacy techs, nursing students, phlebotomists, EMT’s and more.  And most said that either yes, their diagnosis inspired this decision or that it at least cemented it.

While this is all purely anecdotal, and I’m aware that it’s no real sample size, still, there seems to be some sort of trend.  But why?  Why go into a field that may add risks to your already sensitive health?  A field known for it’s added stress levels, long hours, potential exposure risks, and other factors?

My honest best guess is empathy.  Empathy for the suffering of others that might mirror out own at times.  Combined perhaps with a desire to “give back” to the community of people who help to keep your own health and wellness on track.  That is my best guess only because that is what it is for me personally.

My father Robert has had his mustache for 39 years, since he was 18 years old.  But this Christmas he’s putting his beloved ‘stache on the line in the name of Chronic Illness support (and quite possibly the best christmas present ever).  Inspired by the efforts made by David Axelrod (campaign advisor to President Obama) for Epilepsy research, if I can raise $500.00 for the Chronically Awesome Foundation by Christmas Day, my father will shave off his legendary mustache on film.

I’ve been living with Lupus (and other chronic conditions) since I was 14 years old (I’m 25 now), and I have been writing under the hashtag (#) Chronically Awesome for about two years now.  Now that this community has become a full-fledged charity organization hell-bent on supporting people like me accomplish their goals and dreams…I can’t WAIT to raise this money and get involved.  You can find my website by clicking here, and the Chronically Awesome Foundation link is just above!

The CAF is a brand new organization but has been a community for almost two years now.  As a charity organization, Chronically Awesome (founded by Jules Shapiro) seeks to support those living with chronic illnesses, helping them fund their own projects and dreams and to live the full lives they deserve!  And please be assured, 100% of the money donated will be given directly to the Chronically Awesome Foundation!!

Aside from the fact that helping the Chronically Awesome Foundation is just about the best Christmas gift I could ask for…I also REALLY want to see this mustache get hacked!  I mean, let’s take a look at the evolution of this thing throughout the years, shall we?

There he is (on the right) in the early days of his mustachey life.

Here, the mustache is in it’s glorious prime.  In face, most hair-related choices made in this image were pretty stellar.

And here is the most recent evolution of the signature mustache, still going strong.

So click here to donate if you can, and keep checking back for updates!  More pictures, videos, and testimony from the man himself are to follow!!

For those of us with Lupus, or other conditions that come with inflammation (arthritis, for instance), Fish Oil can actually reduce our symptoms.  And it isn’t simply masking our symptoms or temporarily relieving them.  Several studies have shown that Lupus activity actually decreases in patients who take Fish Oil supplements, and there were proteins that work to reduce inflammation that were created in the bodies of those taking the supplements, and were not found in placebo patients.  These proteins allow for long-term easing of the diseases effects.

But it’s not just Lupus patients who can benefit from these oils, EPA and DHA are continuously showing amazing results in reducing the risk of AND improving the symptoms of several mental illnesses including Depression, Bipolar Disorder, Schizophrenia, and even potentially Alzheimer’s Disease (further research required for that last one).  Being that those with physical Chronic Illnesses are often also affected by mental struggles like Depression and Anxiety, and that 1 in every 10 suicides occurs in a patient with Chronic Illness, I think anything we can do to reduce our risks puts a smile on my face.

And one of the greatest benefits that Fish Oil carries is it’s cardiovascular improvements.  It’s an all-around heart-healthy substance, reducing blood pressure, lowering the risk of heart attack and stroke in patients with cardiovascular disease, and lowering cholesterol.  Personal anecdote incoming: I’ve had a struggle with high blood pressure the past year, maintaining a risky diastolic number of 91.  With Atrial Fibrillation and the already elevated risk for cardiovascular disease due to Lupus, that’s an even riskier number to be looking at.  Despite a change in diet, and increased cardio exercise, the number just wasn’t moving.  I started taking daily Fish Oil supplements, and within a month brought my number down to a very healthy 72.  Of course I’ll keep exercising and eating well, because that’s the best way to maintain heart health, but there’s no doubt that the Fish Oil helped me bring my risk factor down fast.

The best part about the fatty acids is that there are very few risk factors.  The risks involved typically revolve around the same risks you take when eating fish (mercury levels, especially for pregnant women) and sanitary issues.  Taking it in supplement form may be safer than trying to consume the same amount within your regular diet.  Below you can see the amount of omega-3 fatty acids found naturally in different kinds of fish you might eat.  To compare, the average supplement (which will also usually combine vitamin D and sometimes calcium) contains about 720 milligrams of EPA and DHA, equal to 0.72 grams.

Happy Birthday to the fantastic Jules!  This woman has been leaving a trail of awesome wherever she goes, and now she’s gone above and beyond!

The Chronically Awesome movement is now officially a non profit foundation, legally accepting tax deductible donations to do what Jules and so many of us dream about: helping those with Chronic Illnesses live the lives they WANT to be living!

Jules contacted me quite soon after my first post on Tumblr, sharing my sentiments about the negative “spoonie” culture, and how life with Chronic Illness desperately needed a more positive outlook.  I started using her #chronicallyawesome hashtag on all my posts, and found inspiration in the writing of her and several other bloggers adopting the same “we shall overcome” attitude.

And now, two years later, Chronically Awesome is more than just a tag, or an attitude.  It’s a Foundation and a new force for good in the world of Health and Wellness.  I’m so excited and proud to see this happen, and to be a part of it.

And you can be too!  Be as involved as you’d like to be.  You can simply start adding the #chronicallyawesome tag to your posts, you can make a tax-deductible donation to the foundation, you can sign up to volunteer…whatever is within your means or desires, it’s up to you =).

Today, it’s Jules’ (of WhatTheJules, and the Founder of the Chronically Awesome Foundation) birthday, so the support shown today for her labor of love would be the best gift ever!  And, it’s not just her you’d be giving a smile to.