Gluten-free at Disney

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Disney, Disney World, food allergies, gluten-free, lauren marchi, Magic Kingdom

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.

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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blood tests, chronic illness, diagnosis, doctors, frustration, journey, lauren marchi, ultrasound

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

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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aerobic training, Arthritis Foundation, exercise, indoor cycling, joint pain, lauren marchi, RA, Rheumatoid Arthritis, spinning, strength, strength training, stretching, yoga

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.

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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amalgam fillings, auto-immune, chelation, chronic illness, heavy metals, immune system, joint pain, lauren marchi, lead, mercury, RA, remission, Rheumatoid Arthritis, test results

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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antibiotics, chronic pain, doxycycline, flare-ups, immune system, inflammation, joint pain, lauren marchi, medication, minocycline, pain, RA, research, Rheumatoid Arthritis, tetrecycline

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.

 

 

a painful mistake

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airlines, baggage, chronic pain, Cimzia, flare-ups, lauren marchi, medication, packing, packing with medication, pain, RA, Rheumatoid Arthritis, travel, travel with medication, TSA medical travel

Little did I know how painful of a mistake it would be to put my medication in my checked-in luggage. I guess I’m learning the hard way how to do all this traveling.

When I said I wanted adventures, I didn’t know how much responsibility came with traveling with medication. As usual, I packed my bags for my recent trip to Seattle, with extra gluten-free snacks and all my medications thoroughly stocked, just in case. I even packed my Cimzia specialty medication on a ton of ice for the long flight, since that particular medication has to be refrigerated. But I had no idea that the airlines would lose my bags that day!

After hours of waiting and slightly panicking, I finally heard from them. They found my luggage, but they didn’t want to deliver it to Silverdale, WA (a ferry ride away from Seattle’s airport)! I urged them (mostly with threats and yelling) that a very expensive medication was going to spoil because of their negligence, so the airline finally agreed to deliver it within the same evening. However, by the time I received my luggage, the ice had melted and the Cimzia was warm, which meant that my very expensive specialty medication had spoiled.

All I could do was pray that maybe it didn’t reach a warm enough temperature and would still work. But I tried taking one syringe that week, and a few days later I was in terrible pain from a flare-up. No luck, I was going to have to live without the meds…for the entire month!

Note to self (and to anyone listening): pack all medications in your carry-on from now on. TSA even has special rules for those carrying medications with liquids or syringes.

Well fingers crossed that the drug manufacturer will be able to approve my Cimzia replacement request that I submitted this morning. I thought I could rough it for the month, since I’ve been doing so well on the health front lately, but I am currently two weeks in without medication and I can barely stand it. It’s time to take desperate measures — acupuncture, long baths and lots of wine…

staying active

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active, biking, exercise, exercise and RA, flare-ups, Hawaii, hiking, inflammation, joint mobility, joint pain, Kauai, lauren marchi, Na Pali Coast, RA, Rheumatoid Arthritis, strength, strength training, travel, weight lifting

You may be thinking that staying active is the last thing someone with rheumatoid arthritis wants to do, when energy levels are often low and joints are often inflamed.

However, studies show that regular exercise and activity may help reduce joint pain and stiffness, increase joint mobility and muscle strength and improve psychological well-being. Research has shown that strength training exercise, physical therapy, and lifestyle changes all have the potential to even slow the progression of the condition [that means less joint damage]. Recommended exercises include swimming, stationary bicycles, weight lifting and yoga.

And the last month was proof that staying active has really improved my RA pain.

At the beginning of June, I was at the top of Yosemite’s Nevada Falls. And just a couple weeks later, I made it on another 8-mile hike up the Na Pali Coast in Kauai, Hawaii. Hiking through beaches, jumping over creeks and sloshing through the mud from the rain, my boyfriend and I made it to the beautiful Hanakapi’ai Falls and then back in time for sunset at the beach.

The Kalalau Trail was such an amazing view of Kauai’s coast and immersion into its dense forests. I was so happy that I was strong enough to finish the hike. And the best part was that I finished without pain! Of course my muscles [especially my thighs from those stair-steppers] were sore after that strenuous day, but my joints were strong and not even swollen.

I am a firm believer that it is because I have been swimming, weight lifting, biking and even spinning regularly. My muscles have gotten stronger to protect my weak joints. And it has really helped lessen my flare ups as well. I’m even starting to talk to my doctor about remission [AHHH]!

Living with rheumatoid arthritis doesn’t have to stop you from traveling [or hiking] these beautiful places in the world.

top of the mountain

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friends, hiking, inflammation, knee pain, lauren marchi, RA, Rheumatoid Arthritis, waterfalls, Yosemite National Park

Last weekend was a triumph for me. I hiked 7.8 miles up The Mist Trail in Yosemite National Park, climbing 2000 feet in elevation in 85-degree weather…and I made it to the top of the mountain! It was quite the adventure!

It was such a beautiful view, with two waterfalls and raging rivers along the way. But it was also intense — myself and 4 other girlfriends were basically doing stair-steppers the entire way up the mountain, which was nearly 4 miles. We were cheering each other on along the way to help with the stinging feeling in our butts!

But once we made it to the top of Nevada Falls, we took off our shoes, rinsed off in the freezing cold water from the falls, and ate our snacks. It felt so good to look down and see what we had accomplished…until the hike back down! At least we took the slightly less steep John Muir Trail, behind the waterfalls. It was in the shade and had great views from afar of the park.

The best part was that feeling the next day of complete exhaustion mixed with smiles of victory. And my body didn’t even have an RA flair, which was amazing! My inflammation in my legs and knees was minimal comparatively, and all that was sore the next day were my glut muscles We stayed in Mammoth Lakes at the beautiful Westin Resort and spent the morning being lazy next to the pool, which was surrounded by the beautiful forest.

It was definitely a gorgeous weekend to escape to Yosemite.

Check out more pictures from my trip on The Daily Chronic Facebook page!

And don’t forget to “like” the page to keep up with posts and other information about living a life with a chronic illness.

staying positive

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acupuncture, chronic disease, chronic illness, chronic pain, emotional stress, exercise with RA, flare-ups, inflammation, joint pain, lauren marchi, living with a chronic illness, living with RA, RA, Rheumatoid Arthritis, staying positive, stress, support, swimming

It can definitely be difficult staying positive when you feel like you’re losing control of your body. The chronic pain during a long flare-up can be very frustrating and exhausting, physically and emotionally. But it’s so important, especially during a flare-up to stay positive in order to beat it and avoid joint damage.

I am still coming down from a pretty bad flare-up after my sunburn. It lasted nearly two weeks, one of the longest flare-ups I’ve had in two years, and was very frustrating and painful. It’s easy to get into the habit of thinking “Why me?” and “Why does my body hate me?” It can be emotionally stressful feeling out of control. And even my doctor is running out of treatment plans, which can be discouraging.

But in order to cope with the pain and frustration, I know how important it is to stay positive and lower my emotional stress so I don’t prolong the flare. The longer the flare, the more likely joint damage can happen.

Just like this article says, Staying Positive with RA, a few of the things I do to help with the frustration include acupuncture, staying active with exercise, and talking through it. Even in my pain, I try to keep up low-impact exercise like swimming and stretching to keep my joints moving. The activity and movement help with the stiffness. But it’s important not to overdue it during a flare. Acupuncture also helps energize my body and keep the inflammation down. It’s a relaxing way to keep the emotional stress down as well.

But one of the best things to do during the feelings of frustration about the pain is to talk to loved ones about how you are feeling. Holding it in is not going to help, because it can cause more stress and depression about your situation. There is no reason to feel ashamed for having Rheumatoid Arthritis because it’s who you are and what you are living with. That’s one of the reasons I started this blog, and my new Facebook page, to share my story. And since I decided to share my chronic illness with those I care about, it has been amazing how much support and strength I feel from them. I can get through anything now.