Monthly Archives: August 2015

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Treatment Update #3

Hello all! I’ve been a little lazy with blog updates lately, and I’ve missed you, my lovely, lovely readers. Today, I want to share some treatment updates.

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First of all, some exciting news. I got into the neurology clinic at the University of Utah! This means I’ll finally be evaluated for things like multiple sclerosis and dysautonomia. It’s proven extremely difficult for me to be referred and accepted into a neuro clinic, so I’m considering this a pretty huge feat. Hopefully it will mean some good things in terms of healing and diagnosis.

I’m going to stop my treatment for Lyme disease. I explain that treatment more in this post. I started with antibiotics, and quickly realized that was an extremely bad idea, considering my digestive health. Antibiotics have hugely detrimental effects on gut health and completely wipe out the good flora in the digestive tract. I am now taking Banderol and Samento, which are herbs that have been shown to be equally as effective as antibiotics in Lyme treatment. My Lyme test is still indeterminate, and I haven’t seen any positive results from the Banderol and Samento, so I’ve decided to pursue new avenues of treatment, namely restoring my digestive health.

I’m also working on finding the right balance of bacteria in my gut. Chronic antibiotic use and Fibromyalgia can both lead to SIBO, and my gut symptoms are definitely suggestive of bacterial overgrowth. I wasn’t able to do the hydrogen breath test I’d mentioned previously, because it involves drinking a solution that contains lactose (I have a dairy sensitivity), but my naturopath is helping me treat for SIBO anyway. We both agree that my symptoms and medical history suggest SIBO, probably caused by fibromyalgia and exacerbated by long-term antibiotics.

To wipe out bad bacteria, I will take Candibactin, a combination of antimicrobial herbs. In addition, I will continue taking VSL #3 and Prescript Assist, which are both probiotics that will help maintain a good population of beneficial gut flora during SIBO treatment. The problem is, overgrowth can happen with both good and bad bacteria, so there’s a lot of guesswork involved in repopulating the gut. Also, I’m still following my anti-inflammatory diet plan, similar to the AIP; I also incorporate some concepts from the GAPS diet.

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Additionally, I take L-glutamine, which helps repair the lining of the intestines, especially in the presence of long-term stress. I also drink aloe vera, which is a general digestive-soother, but also helps with acid reflux. With meals, I take GI-encap, which is a blend of licorice, aloe vera, marshmallow, and slippery elm. Finally, I take ginger, chamomile, and peppermint to help calm my stomach and stimulate digestion.

I’ve also recently come across two fairly recent studies in Fibromyalgia and Chronic Fatigue Syndrome that have had some incredible results.

This New Scientist article talks about a cancer drug, Rituximab, that had some unexpectedly positive results on chronic fatigue sufferers. Rituximab wipes out B-cells, which stimulate the production of antibodies. This could suggest a more autoimmune component to Chronic Fatigue than previous research would suggest. It will take some time for Rituximab to become usable (and affordable) for CFS sufferers, but I will definitely be on the waiting list!

The second study deals with vagus nerve stimulation. The vagus nerve regulates the parasympathetic nervous system, which is directly connected to stress and immune responses. In fibromyalgia, the vagus nerve can become less responsive , or “undertoned,” which leads to slower digestion and irregular heartrate, as well as impaired immune response through parasympathetic nerve pathways. Lots of studies have been done with vagus nerve stimulation on fibromyalgia sufferers, but recently, people have been using TENS units or Electric Muscle Stimulation to stimulate the vagus nerve through the inner ear. This is still new research, but something I plan to cautiously try at home.

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That’s all for now, my dears. I hope you’re all enjoying some good weekend hooplah.

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Everything Happens for a Reason…But Not Really

This is going to be sort of a heavy post. But first, I want to share one of my favorite birthday gifts– my super cool new yoga sweatshirt. Thanks, Ina!

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Okay, now onto the guts of today’s post.

I’ve spoken to multiple people recently who’ve been in situations of trauma or suffering, and have explained to me that they comfort themselves by remembering that “everything happens for a reason.” That statement has never been comforting to me, and, in some ways, it’s even frustrating. It’s empty and convoluted, and it communicates a hopeless and complacent way of looking at negativity in our lives.

When trauma or suffering happens in our lives, we look to make sense of the things which are ailing us. “Everything happens for a reason” is a way to comfort ourselves– a way to get a partial grasp on something confusing and seemingly intangible. In my experience, placing this sort of “purpose” can distort our views and take us even farther on the truth. Here’s why:

“Everything happens for a reason” can be interpreted two ways: the “reason” is either external, suggesting that some all-powerful force is behind our suffering, or the “reason” is internal, meaning we believe we are the sources of our own suffering. If you believe some divine/otherworldly being is behind your suffering, you create the illusion that you are powerless in your own situation, and that the force in control in your life wishes you harm. Is there really a cruel god, or even a cruel universe, puppeteering us– causing young mothers to die of cancer, causing situations like mine, where we have to withdraw from happy lives for reasons of pain or trauma? I see this as extremely unlikely. When you hear hooves, you should think horses, not zebras or unicorns. The simplest answer is usually the right one. If you have cancer, it’s likely because a cancerous growth attacked your immune system and causes abnormal cell reproduction. It’s less likely that happened because the cruel god of cancer wanted to punish you for not spending more time with your family.

If we don’t externalize, we internalize– you tell yourself “I asked for the pain. It’s punishment for something I did wrong.” It’s natural to self-blame, especially in situations of illness or abuse. You think “I caused my symptoms because my lifestyle isn’t adequate. I stress too much, I don’t eat right or exercise enough, etc.” We look for the causes that are closest to our control– our own actions. It’s the clichéd abusive relationship scheme, where the victim of abuse blames him/herself for warranting the abuse. Obsviously, this way of thinking is flawed, and not at all conducive to healing.

I don’t believe “everything happens for a reason” because of the fallacious perceptions this type of self-comfort causes. However, people are not created to be sick, or to suffer. Therefore, I do believe there is some reason at the center of the illness. The reason is the world, the abuse, the abuser, the strange elements of life that were twisted to send you into an unnatural and unpleasant situation. There is nothing comforting about the cause or reason for suffering. The true comfort comes from the outcome of the illness or ailment– the way you decide to continue, and the positivity and wisdon you’re able to gain from the situation. None of this is predestined or external. It’s all individual, and comes from your personal choices in handling your battle. You empower yourself through movement and self-confidence, not self-blame or hopelessness. So, yes, everything happens for a reason…but not really.

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Birthday Blues

Yesterday was my 22nd birthday. It was a hard day. Around a year ago, this time of year, my symptoms were starting to worsen. I was enrolling for school, but nervous about how much I was going to be able to handle. I had just finished my summer job, and was tired from my schedule, even though I was only working afternoons. I kept telling myself “this is temporary…it’s a fibromyalgia flare…it will go away and school will be just like it was last year.”

August 2014
August 2014

My symptoms kept getting worse, and the life I’d known before started to deteriorate. I could study for an exam all days, and be too weak the morning of the test to go to class. I kept making plans with friends and canceling because I didn’t have enough energy. I started spending more of my time seeing doctors and resting. I told myself “I’ll just take some time to figure out what’s wrong…by next year at this time, I’ll be recovering.” Of course, I had no idea if I’d actually be recovering, but it was comforting to think there would be an end to the symptoms and lack of control.

It’s been getting closer and closer to the “deadline” I set last August, and my symptoms have been getting worse. I feel like I have so few abilities, and I’m hitting a lot of dead ends in my medical tests. This week, pain and weakness were especially bad, and that sent me into a downward emotional spiral. It’s not fair that I couldn’t make plans for my birthday like a “normal” 22-year-old, it’s not fair that I can’t go back to school, it’s not fair that I’m always in pain and none of my doctors have any answers.

None of it is fair, and it’s not going to be fair. I can’t bargain with the illness, and I can’t decide that if I will things to change, they will actually change. I have limited choices, and I have to accept that for now. Happiness is mostly an internal state. I don’t think it goes entirely unmediated by external factors, but I think we’ll always wish for better circumstances no matter what our current situations are. So I decided to let myself be angry, and have a birthday in pain. I allowed the situation to be as it was. I still appreciated small things, and I grieved for the things I couldn’t have. I wasn’t able to have a big gathering, or go out with friends. I settled for a movie with my boyfriend, and even that was pretty exhausting for me. I still ended the day happier than I’d started it, and I think that’s a big step in healing.

Lesson learned: false deadlines for undesirable situations don’t help. They give us false hope, and good social defenses, but eventually, the scaffolding will start to fall, and we’ll have to reexamine everything we’d once considered comforting and true. Being honest and practical about pain or trauma is the only way to get through it. So, from now on, I’ll be honest with myself, and appreciate as much of my situation as I’m able. I’ll keep looking for answers, but I’ll stop feeding myself false comfort and motivation. I will be ambitious for healing with no pretense.

On a different note, my gastroenterologist has decided to start some new stomach medication, and my feeding tube is set to be moved the first week of September. I had some abnormal thyroid tests, so I started thyroid medication today. Finally, I have a referral to see a neurologist to explore some of my neuropathic pain symptoms, and get an MRI. Hopefully some of these new therapies will lead to new avenues for healing. Thank you, again, to those of you who provided the funding for my new tests and therapies. My research will keep me moving forward, and I plan to keep trying new strategies until I find more comfort in my mind and body.

Birthday Cake Image Source

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How I Get Through a Bad Day (or Week)

Ciao Bellas/Bellos,
I have been having a rough week… a really rough week. For the past couple months, I have made some lifestyle, diet, and therapeutic changes that have seemed to help significantly. I went from being mostly sedentary to being able to travel to Salt Lake multiple times weekly, visit with friends, spend time outside, etc. Friday, I met a friend at City Creek Outdoor Mall on Friday to say goodbye before she leaves for med school (congrats, Nikki!). We did pretty normal twenty-year-old-girl-at-the-mall things: walked around, looked at shoes, talked about nothing. Without thinking twice, I grabbed a tea sample from Teavana. Whoops– silly Summer, you can’t consume things without knowing EVERY ingredient beforehand. There was pineapple in my “raspberry lime” tea sample, pineapple being one of the many sensitivities I’ve acquired in the past two years (before age nineteen, I had no food allergies). Not only did I have a bad reaction to the pineapple that lasted three full days, but I also had an immune crash from the allergic reaction, causing a symptom flare I’m still recovering from.

Transitioning from fairly functional to completely bedridden and miserable was so disheartening. I was used to being able to get up in the mornings again, and now I was stuck with head-to-toe pain, a pounding head, weak, tingly muscles, and an energy deficit I recognized far too well. I lay there feeling sorry for myself for hours, wishing I could do all the things I couldn’t do, trying to get up and running out of energy within minutes, biting my nails, staring at the wall, waiting for the pain to go away so I could be happy again. I thought about what I could do to change the situation, how to be mentally stronger, how to beat the symptoms. Then, I realized, there was nothing to overcome– no battle to win, nothing to “get through.” There is no way “correctly” handle a really bad day. When you get in a “funk,” the best you can do is nurture yourself, and make the time as valuable and rewarding as possible. Stop trying to control things you have no control over, and stop looking for the reason you might be at fault for the situation. Just be– ride the waves with patience and compassion for yourself.

I did manage to brainstorm a few things that seem to help me more than grouchily staring at the ceiling:

Change your scenery: I get stuck thinking about the parts of my situation I can’t change, and I forget there are still things I can change. Open a window, go for a walk. Get off your laptop. Take a trip to your favorite coffee shop. When my pain is bad and I’m restless, I’ll even walk in circles around the house. It’s amazing how a change of scene can change your attitude and outlook. Take a look at this post to read more about how this helps me.

Make a moment yours:

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Zentangle
Zentangle

“Today is just not my day.” I’m sure you’ve heard that one before. Too often, we have the false idea that bad things happen to us, and we just have to bare them. Stop waiting for good things to find you, and decide to make a good moment in your bad day. Set some time aside, take a few deep breaths, and do something you like that you know you’re good at. For me, those things are usually reading, writing, or zentangling (see image above). Whatever you choose, let yourself really enjoy the time, and know that there are good things to enjoy, even in a bad day. That way, you haven’t “wasted” the day, or spent the time feeling hopeless and incapable. If you’re able to “make a moment yours,” you realized that you still have power and resources, and you used them to pull yourself out of a rut. That thought, alone, is something to feel good about.

Do not catastrophize the situation: When one thing goes wrong, we tend to think everything is going wrong. We spend our days creating protective barriers around sensitive parts of our psyches, and when a “bad day” punctures that barrier, all those sensitive subjects become suddenly vulnerable. Stop, view the situation for what it is, instead of what your fear and anxiety causes you to assume. Don’t let a bad day dig up more pain than it has too. Even though you had a tough time at work, you still have the same abilities you had yesterday, you still have loved ones to go home to, etc. One thing falling apart does not ensure that everything else will, too. In fact, it’s likely the bad situation itself isn’t as hopeless as it seems when you’re in it.

Chocolate, duh:

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In all honesty, I think treats are an important part of self-care. You don’t want to become reliant on food as an emotional habit, but a special snack, or your favorite cup of coffee or tea can really help you calm down and reset a stressed-out body and brain.

Hug a kitty:
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Because Aaaawwww.

That’s all for now, my dears. Now, onward and off to better days!