my story of gratitude

In honor of Valentine’s Day, I wanted to “Share the Love” and thank my mom for all of her love and support during the past 8 years of my medical journey.

Check out my story of gratitude on The National Foundation for Celiac Awareness. And you can post your story too!

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Love you mom!

 

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just ask

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I know it has been awhile since I’ve posted, but I’m back! And 2014 is a new year!

A little recap of the last 6 months: I moved to Denver in May; I picked up a cooking hobby over the summer and I hope to work on my very own cookbook in 2014; my boyfriend was in the hospital for a week from an a-typical pneumonia (poor guy); I was scuba certified in September, so it’s about time to plan that exotic getaway with my man in 2014; I had foot surgery on both feet to remove some rheumatoid nodules in October; I had to get pre-melanoma cells removed on my back in November; and then the very busy, but amazing, holidays! It has been quite a 2013, and I am looking forward to a fresh start.

Speaking of a fresh start…I changed biologics in September to treat the Rheumatoid Arthritis. I was taking Cimzia, which was a self-injection biologic similar to Enbrel, but it wasn’t quite hitting the spot. I was still swelling and having to take Aleve like it was candy. So my new Rheumatologist, Dr. Zachariah at the Colorado Arthritis Center, wanted me to try Orencia. This is a different type of biologic that works early in the rheumatoid arthritis inflammatory process at the T-cell level, reducing the activity of the T cells, which reduces the activation of other cells in the rheumatoid arthritis inflammatory process. I also take this biologic as infusion once a month, so a lot less hassle.

Only downside is that it could take up to 6 months to “kick-in”. I started Orencia in September and after 4 months of infusions it is just starting to work for the pain and inflammation. In the meantime, my doctor prescribed me anti-inflammatories and some pain medication for overnight when I just couldn’t handle it. I’ve noticed that I don’t need as many anti-inflammatories (Diclofenac) after the last infusion on the 2nd, but I am still swelling, just not as much pain. So the doctor has also prescribed me Hydroxychloroquine, originally an anti-malarial medication that also treats auto-immune diseases such as lupus and RA.

And here’s where I get to the “just ask” part…I went to Walgreens and asked for the inactive ingredients for the Hydroxychloroquine tablets. NOTE FOR GLUTEN-FREE READERS: This is something I always do at a pharmacy. You can ask for the pamphlet that came with the bottle and search at the top of the page for the ingredients and inactive ingredients breakdown to check for gluten! Unfortunately, the tablets they stocked included pre-gelatinized starch, but this is vague. Starch can come from any source, some gluten-free, some not. So I asked the Walgreens Compounding department about creating a gluten-free version, but they were not able to order the active/main ingredient for me. So my last resort was to call the Manufacturer.

I sent an email and also left a voice message for the US Ranbaxy Pharmaceuticals location. I had Walgreens send me the NDC#, name and dosage so I could ask exactly what the pre-gelatinized starch source was. Within 24 hours, they called me back. Can you believe that?! Good news is that the source of the starch is corn so I can take the generic Hydroxychloroquine, as long as it is from Ranbaxy as the manufacturer.

So don’t forget, if you’re worried about the gluten in a medication, just ask your pharmacist and ask the manufacturer. They can actually be very helpful!

my gluten-free hobby

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Some of us with an auto-immune disease have to follow very specific diets because our immune system has weakened our digestive system. But living a gluten-free and wheat-free lifestyle hasn’t been all that bad the past 6 years.

According to the National Foundation for Celiac Awareness, gluten-free diets are common with most auto-immune diseases, thyroid diseases and even autism. “The gluten-free diet is the fastest-growing nutritional movement in America,” and in the past few years, it has become a huge trend. This makes it a lot easier to find foods and baking flours that are gluten-free on the shelf of most grocery stores.

The newer Paleo diet has also shown many improvements for those with autoimmune diseases. “Adhering to man’s natural diet has the potential to restore many necessary functions of the body and, by report, halt autoimmune disease symptoms in many.”

Lately, I have taken on the hobby of finding various paleo and gluten-free recipes (mostly on Pinterest) and trying them out. Because of my restricted diet, I usually cook for myself at home and it could be easy just making simple salads all the time. Instead, I have made cooking one of my favorite hobbies of the day! My boyfriend usually can’t even tell the difference.

Check out some of my favorite recipes: “Scrumptious Foods” Pinterest Board Enjoy!

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Gluten-free at Disney

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We went to Disney World Magic Kingdom for the last time before our move out of Florida and to my “magical” surprise, I was able to eat gluten-free at this happiest place on earth.

At Pinnochio’s Saus near to Cinderella’s Castle, they even make Amy’s gluten-free pizza or have Udi’s gluten-free crust available. All you have to do is say you have food allergies and you will be provided special attention by a manager. It takes a few minutes longer to make, but it is worth the wait!

Here is a link to more gluten-free spots at Disney for your next visit.

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Another tip for going to Disney theme parks with rheumatoid arthritis or another chronic pain condition is that they provide disability passes and wheelchairs for free. I simply went to the Guest Services office after the main entrance and explained my condition. They were very sympathetic about the long waits and provided wheelchair option and a ticket to pass most lines. This allowed me to do more sitting instead of standing in the long lines, and I lasted a whole 12 hours at the “most magical place on earth.” Thanks Disney!

chronic frustration

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It can be so frustrating when you feel pain, but all the tests keep showing up “normal.” What the heck does normal mean, anyway?

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I’ve been having abdominal pain since January, and I just thought it was stress…then I thought it was gas…then I realized it had been a month and having pain that long means it’s time for a doctor. A lot of people who have chronic pain tend to brush off new chronic pain until it just becomes unbearable.

And not only is the pain frustrating, but the process trying to figure it out can be as well. Doctors can only guess at what is causing you pain, so they send you off to radiologists and labs to take blood samples, ultrasounds and scans. The good news in my case is that these tests ruled out major issues, like ovarian cysts, kidney infections or gallstones. But after all of these tests (and all the money spent), I still don’t know what is causing this pain.

After ruling out all of my main organs, the only thing we can think of is my intestinal tract. So the next step will be to pinpoint what might be happening in relation to food or digestion.

All I have left to say (after venting in this post) is that I understand how frustrating the search can be. I went through it once when we were diagnosing the rheumatoid arthritis, but it’s an ongoing battle. And I’d love to hear from my readers about their journey as well.

new years resolution for arthritis

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Studies show that regular aerobic and strength training exercise may help reduce joint pain and stiffness, increase joint mobility and muscle strength and improve psychological well-being. Do you have a New Year’s resolution even living with RA?

It is important to keep your exercise program well-rounded. According to the Arthritis Foundation, it should include aerobic exercise to strengthen your heart and lungs, strengthening exercises to make your muscles stronger so they can better support your joints, and stretching exercises to keep your muscles flexible and joints moving freely.

Indoor cycling or Spinning® is a great way to exercise with rheumatoid arthritis. The 45-minute program targets thigh and hip regions, strengthening the muscles and joints and in effect, easing the pressure on the joints. I have been spinning for the past year and it has significantly increased the strength of my leg muscles, which eases my joint pain overall.

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Another good type of exercise is yoga. Some of the poses may be hard on your wrists, like they are for me, but there are variations that can help. Yoga is a good strengthening and stretching type of exercise to keep flexibility in your joints and muscles.

During exercise with rheumatoid arthritis, it is very important to pay attention to your body. If a particular joint is actively inflamed or in a flare, give that joint a rest, but continue to exercise. And while it’s natural to experience some muscle soreness following a workout, increased joint pain may mean you’re working too hard and need to scale back your exercise routine.

“Adjust your workout to accommodate your body,” Dr. Siegrist says. “If you take a spinning class and it hurts when standing on the pedals, sit – but keep pedaling. By modifying your activities, you can do the things you want to do.”

What will your New Year’s resolution be?

mercury chelation

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Last week I finished ten days of heavy metals chelation at the Whitaker Wellness Institute in Orange County. This chelation process helped lower my high lead levels, detox my liver, and even oxygenate my blood while removing plaque on the artery walls. But the only thing it didn’t do is remove the toxic metal mercury from my system, which seems to be the biggest culprit in fighting my rheumatoid arthritis.

Based on the most recent heavy metals urine test I did, my mercury levels are still off the charts. A blood-mercury level of 5 nanograms per millilitre (ng/mL) and a urine-mercury level of 20 ng/mL are considered high and dangerous levels. My urine-mercury level was at 43 ng/mL. This is due to a chronic exposure to mercury — probably from the amalgam dental fillings I had as a child, the amount of tuna I consumed in my life, and possibly the floor wax I used to harden my ballet pointe shoes.

The heavy metal mercury vaporizes from fillings and accumulates in the body, including in the brain. Research from Norway in 2007 shows a direct correlation between the number of fillings and brain mercury concentration. Mercury has various symptoms, such as anxiety and irritability, muscle weakness, and even auto-immune diseases.

According to the Department of Pathology at the University of Connecticut, “There is solid evidence that mercury can induce autoimmune disease.” My rheumotologist believes that the mercury in my body, which has damaged my cells and infultrated my muscles, organs and brain, is stopping me from going into remission from the RA. That’s why it is time to work on this mercury issue so I can have the chance to get well.

Dr. Andrew Cutler, Ph.D. explains in his chelation protocol that first you must remove the amalgam fillings and any other exposure to items with mercury. Next is taking a chelating agent called DMSA for several months, along with Alpha Lipoic Acid. Then we test again to see how effective the chelation is. Wish me luck!

heavy metal chelation

Today I had my first appointment with the Whitaker Wellness Institute in Newport, California to discuss heavy metal chelation therapy.

I’m sure you are all asking what the heck is that?! Well, heavy metals, especially mercury, are in all types of food we eat (like tuna, which I ate religiously as a kid) and even in dental work (like those silver fillings we all had growing up). And our bodies accumulate the heavy metals and sometimes don’t flush them out in time before they creep into muscles, bones and even your brain.

Acute metal poisoning is very rare. It’s really a chronic, low-level exposure to toxic metals that causes your body to retain them. Heavy metal toxicity is associated with many adverse health effects and chronic disease, like auto-immune diseases. Heavy metals were on my list to get rid of eventually, so I decided now is the time. Plus, I get to be in Orange County with some of my family for a couple weeks.

According to researchers and my doctor at Whitaker today, heavy metals test results can be interpreted differently. For instance, a low level of a heavy metal in the blood does not necessarily mean that excessive or chronic exposure has not occurred. Lead migrates from the blood into the body’s organs and over time is incorporated into the bones, which can be hard to test. Mercury, the scariest culprit, is not tested as accurately with DMSA, used as a provoking agent in most heavy metals tests. In other words, I brought a series of 5 heavy metal test results to the institute today, but still had to go through another one for the mercury.

Four hours later, I walked out of the Whitaker Wellness Institute today with more knowledge about heavy metals chelation therapy and a semi-permanent hep-lock IV taped to my arm for the next week (don’t ask, it’s pretty gross if I explain it). But hopefully the next couple of weeks, after a handful of chelation treatments and “Wellness IVs” (a.k.a. IVs of vitamins and minerals to help flush out toxins), I will be a new woman. Okay, at least I’ll be new on the inside.

 

 

antibiotics and arthritis

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Who would have known that a simple antibiotic, usually prescribed to treat acne, could be used to treat swollen, painful joints in patients with rheumatoid arthritis.

Research reports that an antibiotic in the tetracycline family, usually Minocycline, can be used to treat joints in RA patients if therapy begins in the early stages of the disease. This treatment option is based on the belief that rheumatoid arthritis is caused by an elusive organism called a mycoplasma, similar to a virus and bacterium, but much smaller. It isn’t the antibiotic properties, but the effects on the immune system and the ability to inhibit enzymes that break down cartilage and connective tissue that makes minocycline so effective.

“This isn’t a cure,” cautioned the lead researcher, Dr. James O’Dell. “If the medicine is stopped, the problem comes back.” And he’s right. I was taking the Minocycline for about 2 years, and it significantly reduced my flare-ups. But when I stopped the medication, once because of insurance issues and once because I was switching to Doxycycline, I could significantly feel the change within a few days.

Studies have shown that 65% of the patients taking Minocycline showed a 50% improvement in joint swelling, stiffness and pain after six months of therapy. The antibiotic is prescribed at a very low dose, once or twice a day for three days a week. Studies also show that Doxycycline is a substitute that has been proven to work, but Minocycline stays in the system longer. I just switched to Doxycycline a couple months ago, so we will see if it works as well for me.

The good news is that this antibiotic therapy is not only used to treat Rheumatoid Arthritis. Doctors have seen positive changes in scleroderma and lupus patients, including reversal of symptoms and/or remission. And even Doctor Oz supports the antibiotic therapy as a more natural form of treatment.

The only danger of taking a long-term antibiotic for joint pain and swelling is that is may have a harmful effect on your liver. But doctors say that Minocycline generally is considered to be one of the safer disease-modifying anti-rheumatic drugs (DMARDs). It can cause liver damage in long-term use, but only in very rare cases.