About Us

 

Hi there! We are Katie and Olivia, two women in our twenties with chronic health conditions and trying to live full lives despite our health setbacks. We met in Portland, Oregon, each of us working full-time jobs and struggling to get our health under control. As we became closer friends, we realized we had so many things in common: we both had chronic health issues, we both had dealt with these conditions abroad, we both recognized that our illnesses significantly affected our relationships, and we wanted to share our stories.

As young people struggling with chronic illnesses, we face a variety of challenges that, let’s face it, severely suck and can be depressing. The more we’ve confided in each other about our health woes, the more we wanted to create a space to share our healing journeys and connect with other young people on the same path. Put simply, we strive to kick ass in spite of our illnesses. We are open to any and all methods of healing, with a strong belief that our body, mind, and spirit are all connected and play a significant role in our ability to get better.

The point of this blog is not just to inspire people to take action and heal their bodies, but also let other young people with chronic illnesses know they are not alone, and share the knowledge and coping strategies we are learning along the way. Please feel free to reach out for support on our blog and share your own health struggle, natural remedies, diet tips, coping strategies or anything you would like. Autoimmune illnesses affect many people and we’re all in this together!

Katie’s Story Continued Part 2

I managed to find a job in Portland, Oregon, a city known for it’s advances in naturopathic medicine, so I packed up my car and drove myself from California up north. However, the nasty side effects continued to pile up in Portland. The indigestion in my stomach had gotten so bad that the acid from my stomach had begun to irritate my throat. Irritate would be a nice way to describe it. It was more like eroding my esophagus. Every time I swallowed or talked it felt like knives were scratching the inside of my throat. People were constantly asking me to speak up. My friends were confused upon many social occasions as to why I was being so quiet and not drinking any alcohol. My throat feels like it is on fire!  I wanted to scream many a time.

In addition my energy had started to crash here and there. I ignored this side effect at first and tried to believe that it was nothing.

I did start by going to western doctors at OHSU (Oregon Health and Science University). I thought that surely a teaching hospital would be open minded and be able to find the cure for me. I was back in primary care doctor’s office at OHSU, then an Ear, Nose, Throat and then a Gastroenterologist, then an Immunologist, you know-the usual rounds. I got the typical acid reflux advice- avoid chocolate, alcohol, caffeine, etc. All this I already knew and was actively doing in addition to taking omeprozole. In fact, I was shocked they were not telling me more. I had read a book the previous summer about acid reflux and learned about the foods you should avoid with chronic acid reflux, in addition to elimination and maintenance diets as well as natural remedies that have drastically improved this condition for people. However, again Western medicine doctors were just doing the bare minimum to treat me and refusing to look at the overall picture of my health. I was also communicating concerns about my energy level and immune system.  All of them dismissed these concerns saying there was nothing that could be done about it and all my lab work was normal. The ENT at OHSU told me that they only thing I could do to help my immune system was wash my hands. The gastroenterologist told me that they only solution to my acid reflux was to go on strong acid reducing medication or have more surgery. She even discussed the possibility of inserting magnets into my esophagus! There was absolutely no discussion about diet or helpful supplements that could ease and reduce my symptoms.

By this point I was completely fed up with Western medicine. No one was really listening to me or asking questions about my overall health. No one was making connections about what happened to me last year to what was happening to me now. It was as if every doctor was wearing side blinders and so focused on their own specialty that none of them were willing to admit that maybe, just maybe, it was Western medicine in the first place that had left my body so ravaged and maybe it wasn’t going to fix me this time.

So I gave up. For awhile at least. Once again I began researching on my own and studying acid reflux to the death. I gradually improved my symptoms on my own, they certainly did not go away, but at least it didn’t feel like I was swallowing knives anymore. However, come February I could not ignore my fatigue. It was getting worse every day. It seemed to be exacerbated after I ate a large meal or a lot of desserts. I experimented with diet again, giving up gluten, dairy, sugar, but nothing was really curing me. I would also get bouts of brain fog where I literally felt like I went through entire days in drunk haze. I had not been able to work out in months, it was just a struggle dragging myself to work. I remember calculating how much energy it would take to walk to the bathroom from my desk and deciding if it was worth it or not. Once again it felt like Spain, but without the sinus infection.

Finally a co-worker, who incidentally also had a long complicated history of health issues, urged me to go the Naturopathic College of Natural Medicine Clinic in Portland. I was extremely interested in naturopathic medicine, having been studying ways to cure myself for about a year at this point, so I made the plunge and made an appointment. Everything I said was taken seriously, every symptom was taken into account instead of being dismissed as outside of their specialty or unrelated. The students and doctors spent well over an hour listening to my story, asking questions about the overall state of health including everything from my mental health state to my eating habits. Every appointment consisted of discussing the different directions to go and remedies to try, including Western medicine options. A whole new world of medicine and compassionate health care opened up to me and for the first time since the beginning of the long health road, I felt heard.  So this is what it feels like to be supported by doctors!

I won’t lie and tell you that all my problems are behind me and the naturopaths were able to cure me instantly with their magical healing powers. This is not the case. After several months of working with them and trying alternative treatments, I was finally diagnosed with SIBO, Small Intestinal Bacteria Overgrowth. It is also suspected that I have Leaky Gut and a systemic fungal infection.I had to quit my job and have moved to California with my family and am currently seeing a holistic MD, a doctor who integrates Western medicine and natural remedies. I am still in the middle of my health journey and learning how to cope with my symptoms. However, I felt compelled to begin writing and share my knowledge of health conditions, natural remedies, and coping strategies to maintain my mental sanity and not give up hope.

Katie’s Story Continued Part 1

 

Two years ago, two very big changes had just occurred in my life: I had just moved abroad to teach English in the town of Zaragoza Spain and I was also very sick. Two years later, I am still sick, and I can tell you it has turned my little 20 something life upside down. My health saga started with a simple sinus infection. After navigating the complex bureaucracies of the Spanish government and health system I somehow made it into a doctor’s office. Through my broken Spanish and many hand gestures I finally communicated I had a sinus infection. They gave me an antibiotic and sent me on my way. Simple.

I gradually felt better throughout the next weeks and I was thrilled to get back on my feet and begin enjoying my life abroad in Spain. However, as soon as I stopped the antibiotic the tingly pressure began to slowly return to my face along with a great feeling of defeat. This pressure persisted and worsened throughout the next couple weeks and I felt myself getting fatigued again. Soon I was back in the doctor’s office and loaded up  with antibiotics again, this time they gave me an “everlasting” supply. “Just keep taking them until you get better,” they told me.

Day after day I took the little white pill and day after day I would come home from teaching absolutely exhausted, my face still full of pain and pass out on my bed. At this point I had been on antibiotics for about two months with zero improvement. I was exhausted and depressed as hell, so finally after many tearful skype sessions with my parents, I decided to come home for Christmas. I was confident an American doctor could sort me out.

I found myself in an Ear, Nose, Throat doctor’s office; my doctor examined a CAT Scan that revealed my narrow facial bones were trapping the infection inside my head.

“I am confident that you can get better with medication Katie,” he told me and once again I believed it. They sent me home again with more antibiotics, in addition to a heavy dose of prednisone, the strongest type of steroid medication to reduce swelling. Every day I took the little white pills and jammed my face full of salt water saline rinses and no improvement.

Surgery was my next step. My ENT informed me that they were going to do a quick procedure, patch me up and send me back to Spain. “2 weeks recovery tops,” my ENT informed me. Fantastic!  My months of misery would be over soon. In the procedure, I would be awake under some heavy doses of valium. They were going to stick balloons up my nose, break my facial bones, take them out to allow the infection to drain out of my face.  It sounded awful, but at this point I was willing to do anything to rip this horrible thing of my face. I joked with my friends that it was really just a small nose job I would be getting. If Paris Hilton could handle it, so could I!

The procedure did not work. So I had more surgery, more little white pain pills, more anesthesia, more everything. Throughout this whole process I felt like my body was being bombed. Every time they hit me with another surgery, another round of antibiotics, another round of painkillers, my body felt like a tornado was ravaging it’s way through it. I know this feeling is not an uncommon one. The myriad of chronic and terminal illnesses in our society has led Western medicine to produce aggressive medical procedures and surgeries that may work, but at a great cost. Looking back on this experience what truly baffles me is that no one was educating me about what else I could be doing to take care of my body or the possible side effects. I remember asking my ENT if there was anything else I could do to help my immune system and he literally told me, “No, just eat some ice cream.” Eat some ice cream!!!? Knowing what I know now, this was probably the worst advice for an ill patient struggling with a sinus infection.

Finally, the two procedures did manage to get that darn infection out of my face, but I felt absolutely awful still. I distinctly remember my ENT telling me that I was good to go back to Spain and sitting there in disbelief. My face was incredibly inflamed from the surgeries, my body was still weak and fatigued. I basically felt like a rag doll that had been torn apart and sewn back together. My doctor had deemed me “better,” but I did not feel any better, in fact I may have felt worse. However, I decided against listening to my body and went back to Spain. Some may have called this stupid, but it felt impossible that anything else bad could happen. My doctor assured me that my health troubles were over and that I would be healthy and trouble free for a long time.

A month later in Spain, I was sick again. This time it was my tonsils, swollen and painful for weeks. Fatigued and fevery is how I spent my last month in Zaragoza. Once again I came straight home to my ENT. “One more round of antibiotics should do the trick.”  I sat there in disbelief. “Oh and we should probably remove your tonsils.”

It was at the end of this round of antibiotics that my stomach absolutely freaked out. Whatever I put in it, it rebelled with extreme indigestion. Bloating, burping, belching, heartburn, you name it. My body was completely traumatized from the countless rounds of antibiotics, anesthesia, pain killers, surgeries, etc. I removed my tonsils amidst all of this digestion misery because I thought I was already so miserable I might as well just add to it. Probably not the smartest decision looking back, but my doctor was insisting that I would be able to return back to my normal life just after this one last procedure.

Gastroenterologists didn’t believe me when I told them I couldn’t eat. They insisted nothing was wrong with me, I just needed to take probiotics and eventually I would return to normal. Weight melted off of me like butter. By September I was under a hundred pounds. A little weight loss was something I had always wished for, something that I will never wish for again. Every day I woke and felt like my body was withering away. My once strong legs were turning to bone, my ribs had begun to stick out. It felt like I was walking around in someone else’s body, not my own. I remember intently observing other people eating during this time in my life and feeling raging jealousy. What I would give to have my old weight back and eat normally, just for one day!

This was when my self-education and naturopathic journey began. I was determined to cure myself using natural remedies, so I began researching and reading every book, article, or blog out there related to digestion. If doctors couldn’t cure me, I was going to cure myself. I plunged myself into the world of digestion and learned so much about different stomach disorders, gastritis, dyspepsia, ulcers, c. diff, etc. and set to work at the supplement store and diet restrictions. Unfortunately, dealing with a tonsil surgery recovery in the midst of all this, I found myself having to eat pureed chicken instead of the milkshakes I was promised, but nonetheless I stuck to my strict regime. I even took a whirl at juicing cabbage! A stinky endeavor my mother will never let me live down. I caved a little bit to Western medicine and began taking an acid reducing medication, omeprazole, a Protein Pump Inhibitor (PPI) that basically stops the acid producing mechanisms in your stomach.

But I couldn’t cure myself in time to return to Spain, something that I had been holding out for all summer. Dragging my skinny little 95 pound body overseas, would have been truly stupid, so I began looking for other options.

Katie’s Story

My name is Katie, I am a 25 year old aspiring young professional living in San Jose, California who also happens to be struggling with several chronic health conditions. Two years ago I had two sinus surgeries, a tonsillectomy, and countless rounds of antibiotics and painkillers which took a huge toll on the overall state of my health. Many young bodies are able to bounce back from surgeries and antibiotics, but others are left struggling and fighting to get their health back. Unfortunately, I fall in the latter category. Some of the side effects I have endured include adrenal fatigue, immune suppression, brain fog, weight loss, chronic acid reflux, leaky gut, and malapsorbtion. I have been diagnosed with SIBO and it is suspected I have leaky gut, as well as Candida.

I finally have been forced to take a break from my professional life as I slowly continue to put the puzzle pieces together. While I continue to search for answers, I wanted to create a blog that shares my story as well as the knowledge I have gained along the way. While this process has produced huge obstacles in my life, I have gained a myriad of knowledge and become passionate about public health and using a holistic approach to medicine. (See blog posts below for a longer version of my story)

Besides working on my health, I love speaking Spanish, traveling, doing yoga, and volunteering for anything social justice related!

SIBO for Dummies

SIBO (Small Intestinal Bacteria Overgrowth)

I was diagnosed with the dreaded SIBO about 3 months ago now and I can officially say, I have beaten it! It’s difficult to be extremely happy about because I don’t feel a whole lot better. My digestion has improved, but I still have to stick to a strict diet due to the leaky gut and candida issues going on. I tried to incorporate gluten again which left me with a wicked 3 day hangover (see my blog post on how to get through symptom flare up).  However, I must embrace small victories and realize it is all part of solving the greater puzzle. Under this section I would like to incorporate a little bit of information, as well as diet tips and how I coped and beat it ultimately. See the SIBO blogs that I follow on the side for blogs that are written by people far more knowledgable than I on the subject.

But I do know a fair amount about it now, so here is my SIBO rundown. SIBO refers to Small Intestinal Bacteria Overgrowth, and it is just that. The bacteria in your small intestine have gotten a little out of control, there is an overgrowth, an abundance, too many bacteria hanging out in the small intestine. When I was diagnosed with this several people asked me if I had caused it by ingesting too many probiotics. This seems to be a common misconception. SIBO is not caused because you ate too much yogurt; the probiotics you take do not suddenly turn on you, colonize and conspire to make you ill. No, no. Probiotics in food or capsules are an excellent way to rebuild bacteria and promote healthy digestion, even through the SIBO process. The direct cause of SIBO is unknown, but it is suspected that it can be caused by many things including: antibiotics, antacids, birth control pills, parasites, invasive surgeries, etc. Mine was probably caused by a combination of the antibiotics, the PPI (Protein Pump Inhibitor) I was on for several months and possibly my gallbladder removal surgery from a few years ago. Symptoms of SIBO are similar to IBS (Irritable Bowel Syndrome), they include bloating, belching, acid reflux, constipation, fatigue, brain fog, and many more. SIBO can lead to much more serious health conditions and severely impair the immune system to function, so while it’s a new disease, it’s an important one to pay attention too!

There are three ways to beat SIBO.

1) The antibiotic:Xifaxin. This is not the harmful type of antibiotic that I had taken before. This drug stays in the small intestine and does not venture forward to kill off your beneficial bacteria. Unfortunately few insurance companies cover the cost of this drug. The good news is that there is a patient assistance  program through Salix where you can apply and if you qualify they will give you the drug for free! Ask your practitioner about this program.

2.) Herbal Antibiotics.

This was how I beat my SIBO! I took Allicin (a form of garlic), Goldenseal, and Neem. I had to take these supplements for 4 weeks and I took about 10 pills every day. There are a few other options for herbal antibiotics, such as oregano. Consult with your provider about which herbs will work best with your bod.

3.) Liquid Diet

There is a product which you can drink to get most of the necessary nutrients from for 2 weeks and you don’t eat any solid food. This sounds like hell, but apparently it is very effective at getting rid of SIBO.

Following a treatment plan, your medical provider will put you on what is called a prokinetic to help make sure that SIBO stays gone. One prokinetic option is a low dose antibiotic to keep the small intestine clear. I was on low dose naltraxone, which is a little different method. See this blog post from one of my favorite blog gals about what the function of this drug is. http://thehealthyapple.com/low-dose-naltrexone/

Then there is the diet. Oh the joy continues.

Actually, the SIBO diet is not so bad. It just takes a lot of prep and thinking ahead. Please read the other blogs and Dr. Alison Siebecker’s website for an extensive overview of the diet. The jist of it is a version of the Paleo diet; no grains, no sugars, no starchy vegetables. The hardest thing for me to give up was rice and beans. The hardest thing for me to start eating was the quantity of meat. It’s difficult to get used to, but if you have any type of digestive issue or autoimmune condition, there’s a 99% chance you will do better with Paleoish diet, so get used to that chicken! My digestion has improved immensely with this diet, and I can tell you after having gone through digestion hell, that it is well worth it!

When you first start the diet, it’s common to feel really hungry all the time. The bacteria are freaking out in your intestine because they are not being fed all those grains they are used to. So they start sending of signals to your brain that say, “Feed me, feed me!” I remember feeling very frustrated because no matter how much I ate, I never felt full. I also suffered from low blood pressure, which caused me to feel dizzy and on the verge of passing out all the time. So don’t be surprised if your body has some difficulty adjusting to the diet at first. Here are some ways to cope with the transition to the diet:

1) Make sure that you ARE eating.

Don’t be lazy and think you are just going to starve until your SIBO is over. This is a sure fire way to fail. You will get so frustrated with your hunger that you will likely cheat, eat something you’re not supposed to and prolong the SIBO. So you gotta put in the effort. Sit down and plan your meals for the week. Think about what snacks you can make to take on the go and what is a good food prep day or time for you.

2.) Eat fat

Eat fattier cuts of meat. It may seem weird to start grilling up hamburgers and ditching the rice bowls you are used to eating (especially if you are a health nut like me), but trust me, it will make the transition much easier. Fry your fish with olive or coconut oil instead of baking it. Eat peanut butter and almond butter in moderation as well.

3.) Make snacks.

Paleo snacks are harder, but not impossible. See the SIBO blogs for some good ideas on quick snacks. I will post some more blog posts about my favorite SIBO snacks, some of them include roasted carrots, bananas and almond butter, and hard boiled eggs.

4.) Eat protein and salt

I suffered from low blood pressure at the beginning of the diet. Therefore, it was not only crucial that I was eating frequently, but also that I was eating the right things. Shoving my face with empty calories wasn’t going to cut it. I had to make sure I snacked on protein heavy things and incorporated a lot of salt into my diet. A salted hardboiled egg was the best snack for me. This is good advice for those coping with adrenal fatigue as well.

5.) Eat lactose free dairy

I was hesitant  to incorporate dairy into my diet again because I had eliminated it to see if it was contributing to my illness. But I found that digestively I could tolerate at it well at this time. Meals are lot better with some hard lactose free cheese on top! I also made a lot of lactose free yogurt, which was a great source of probiotics and made for yummy breakfasts.

6.) Eat Eggs

I was never a huge egg eater and in fact, I recently became aware of my egg sensitivity. However, I ate a lot of eggs during my SIBO diet when I could tolerate them. They are an excellent, quick fix of protein, great for snacks,meals, and in baking.

Olivia’s Story

 

Hello! I’m Olivia. I’m 24 and live in Portland. A year after I graduated college, I was diagnosed with Chronic Lyme disease, and though the cause of my symptoms was unknown for so long, Lyme had manifested in many ways over the years.  I want to show through this blog that, like me, you are capable of getting your health under control. I enjoy playing music regularly, being sassy and sometimes loud with my friends, tackling big piles of books, writing, watching Netflix, backpacking in the Oregon’s vast wilderness, and taking care of my body through diet, various kinds of movement, and SLEEP. I really love sleeping.

A little more about my health history: As a ten-year-old I was diagnosed with Juvenile Rheumatoid Arthritis.

The diagnosis was attributed to symptoms of swollen, painful joints in my hands and feet, and I was put on heavy medications from 5th grade until I was 16. Despite the major symptoms of arthritis receding at 16, I continued to struggle with brain fog, fatigue, IBS, acid reflux, and leaky gut throughout college.

In October of 2014 I was diagnosed with Lyme disease, and the reasons for my psychoneurological problems and continued joint pain made a lot more sense to me and my family. Since the diagnosis, I have turned towards different anti-inflammatory tinctures, supplements, doctors, support groups, romantic partners, friends & family, and now finally pharmaceutical antibiotics to help me fight the bacterium Borrelia burgdorferi, aka Lyme disease.

I now live at home with my mom and my brother near Portland, and I am happy to be taking care of myself, going through treatment for Lyme, and continuing to participate in the things I love as much as I can. I hope these posts are helpful – especially if you have just found out you have Lyme – and in general a good resource to keep us all sane during rough times.

Cheers,

O

Empathy Exams…

Accept your illness and you will find mental bliss. Sounds easy right? This seems to be the key to alleviate the mental agony that comes along with chronic illness. Every forum, blog, or article I read beats this concept to death. But no matter how many meditations I do or grateful lists I make, this euphoric state has yet to come. I even resorted to staring in the mirror and repeating, “I accept my fatigue, I accept my fatigue.” No matter what coping skills I tried, an ugly monster always seemed to worm it’s way into my mind to make me feel bitter and angry at the world. Once it got it’s foot in the door, it was oh so tempting to give in, spiral into a deep depression and feel like I had been dealt the shittiest hand of cards in life. But forcing this monster out was not working, in fact it was making it stronger.

Since my early days of being a sick young adult, I’ve come to realize that forcing your acceptance just does not work; it will come on it’s on time in it’s own way. For me it did not come at all until I started digging a little deeper and searching for the root cause. Forcing myself to scream into a pillow would temporarily provide relief, but the anger was still there. Shooing the monster out was like pouring fuel on the fire; what it really needed was to be invited in for a cup of tea.

So I tried a different approach. When the monster came round, I began asking it questions. Why are you here? What prompted you to come today? Did you see something on facebook? Did you try going for a longer walk than usual? I was surprised by it’s response. Most of the time it came when I was comparing myself to others. It came after I had seen a picture, read something, or talked to a friend who was traveling, advancing their career, or doing awesome international humanitarian work (all things that I desperately want to do with my life).  At first I hated myself for having this realization. Had I really become so bitter that I could not be happy for other people doing amazing things with their lives? Was I doomed to be the annoying, bitter friend that you could not share any accomplishments or happy moments with? I didn’t like this thought, so I dug deeper.

Most of the people I was comparing myself with fell into a certain category: young, healthy, white, middle class, privileged, and college educated. Pretty dang narrow. I am incredibly proud of my friends; most of them are dedicating their lives to make our world a better place instead of selling out to corporate America. However, every day I am reminded they are privileged and I have been privileged. Born into a white middle class family who put me through college and always supported my goals, I did not experience a great deal of struggle growing up. At least, not struggle in the way I am experiencing it now.

Before I developed chronic health conditions, I was the classic American white girl wanting to save the world. I volunteered in foster homes, worked as a caregiver, and did two  years of AmeriCorps, just to name a few. I was going to change the world and nothing was going to stop me. I felt that my privilege gave me an obligation to help others and being exposed to other’s suffering was the kind of suffering I was meant to experience.

Exposure to suffering does cause compassion fatigue and create a burn-out of it’s own, but now I realize it doesn’t hold a candle to the actual suffering. Subconsciously I believed my privilege insulated me from the having these hardships cross over into my life. In fact, I went to great to measures to ensure the didn’t. By constantly preaching the importance of boundaries, I built tall, thick walls that stood between myself and those I worked with. Walls that had the capacity to let through endless amounts sympathy and very little empathy. I never took the time to really think about what my life would be like if I woke up one day paralyzed or had a Mom too busy shooting up meth to care about me. I took on a small slice of their burdens, but had absolutely no idea what it was really like to live their lives day in day out, nor did I have a desire to learn.

Now that life has thrown me on the other side of the wall for awhile, I see those boundaries come up in many of my friends and family members. When I share my suffering of not being able to work anymore or going through weeks feeling like my brain is encased in massive tube of butter, their eyes widen with fear and the walls start to raise. “No stop!” I want to shout, but it is no use. Once they start coming up, I am stuck on the other side, still suffering, feeling lost and confused. With a little practice, I have been able to find the friends who will take the time to break down their walls and come sit with me on the other side. One of the most meaningful things a friend said to me was, “If I were you, I would be so angry at having to slow down and be dependent on others.” Having that little touch of empathy made me want to cry. I was so sick of hearing, “Wow that sucks, gee that’s too bad, you’ll get through it don’t worry!” Those are natural responses we say when someone suffers, but overdosing on sympathy can make a chronically ill person feel incredibly alone.

The fact is, we don’t like to admit that we are all human and we are all vulnerable. We like to work under the illusion that what is happening to you, could not happen to me. That’s the purpose of building walls between one another, it’s an instinctual move to protect ourselves. With the amount of social media that blast the world’s problems into our lives every day, we all have to put up boundaries to some degree. If I practiced empathy every time I read an article about children starving or refugee camps, I would be an emotional wreck. It’s impossible and unhealthy to practice this for every problem someone shares with us let alone the stories on the nightly news. However, I wonder if this overdose of information has made us numb to not only the struggles people face across the world, but also to the suffering of the people in our lives who matter most.

It’s a scary thing breaking down those walls, taking a step over and truly practicing empathy with someone. I certainly was reluctant at first, but my monster needed it. I had been so focused on comparing myself to the privileged selective group of friends and family, I had completely forgotten about everyone else in the world. I started to read other people’s blogs of those suffering with chronic illness and I felt their struggle, I felt their pain. It was as if my own illness had unlocked the magical power inside of me to empathize with others going through similar fates. Then I branched out. I began practicing empathy when I saw a homeless man on the street or even in a few selective news articles about suffering worldwide. The more I was able to break down these boundaries inside of me, the more my monster was able to calm down, sip it’s tea, and relax.
The amazing euphoric state of acceptance has yet to come, but one thing I know for certain; when I stop trying to block out everyone else’s suffering, the better I can cope with my own. I don’t know if will ever completely accept my suffering, but I accept that I am human and suffering is a part of life. Of course I still feel like screaming and pulling my hair out every once in awhile, but I recognize now that the false insulation of protection is gone and never was there. Empathy not only allows us to feel connected and more understanding of the various degrees of suffering across the world, it also prepare us for our own struggles ahead. I hate to break it to you, but this insulation doesn’t exist for anyone, not even Brad Pitt. I am not preaching to empathize with every person that walks into your life, but I encourage you try a little empathy with someone you care about. Put yourself in their shoes, imagine how their situation would affect your life, and tell them how you would feel if this was happening to you. It might mean the world to them and you might be surprised what it can do for you. You may leave feeling more grateful, more at peace, more connected to the human experience. Personally, I believe I am a better person for practicing more empathy and am more prepared to take life’s struggles as they come.

How to Get Through a Gluten Hangover

It used to be a weekend in Vegas that would wipe me out for a few days. Now my nemesis: a slice of pizza. I recently suffered a gluten “hangover” or “flare-up” that lasted for about three days. Stupidly, I wanted to try to incorporate some of my old favorite foods into my diet again and see what would happen. I am getting the results back of a food sensitivity test next week and I think a part of me wanted to try some things out before my doctor tells me I’m off of them for good. So I made the plunge, I ate a piece of pizza and boy did I pay the price.

It is difficult enough to get through each day without a flare up of symptoms and just extremely low energy, but this took difficulty to a whole new level. It’s a good thing I developed “Self Care University” with lots of different options to keep me sane because I was barely able to get off my floor.

The first day was the worst for me, I was trying too hard to completely accept and find a euphoric peace with my head pounding and my body feeling like a sack of potatoes. But the next day I started to put together some simple activities and just accept the difficult moments as they came. I put together an agenda for when your symptoms are so bad you can barely function, as well as some practical tips to help your body detoxify.

1.)  Listen to some books on tape.

It was a little too difficult for me to read because my brain fog was so bad, so I started listening to some books on tape. Luckily my local library has an app called Overdrive  and you can download books right to your iphone. I was listening to Anne Lamott’s book Small Victories which made me feel very empowered. I recommend choosing a book that either is a fantasy story that can completely whisk you away or a motivational, inspirational type book about someone else overcoming obstacles.

2.)   Chakra Meditations

Chakra Meditations help align the different chakra energy centers of your body. As you breath deeply into each chakra center, this promotes healing in that area of your body emotionally, physically and spiritually. Breathing deeply is extremely helpful for your immune system and helps blood circulate throughout your body to get those toxins outta there!

3.) Listen to some angry and some silly music

Its great to come that euphoric accepting state, but it’s not going to be like that the whole time during your sickness or during a bad symptom flare up. I know this sounds weird, but seriously listening to old school Eminem rap helped me get through it. It helped me get out my anger without being able to go on a run or kick box. I always followed this up with meditation or some deep breathing to help “detox” the anger out of my system as well.  I also listed to some old fun, silly music that helped get myself off my self pity wheel and just be goofy for a little while.

Here’s my flare up playlist recommendations:

1.     Take a Stand- Eminem
2.     Born this Way-Lady Gaga
3.     Roses-Outcast
4.    Thrift Shop-Macklemore
5.     Forget-Marina and the Diamonds
6.     Alive-Sia

You can always follow this pump up by some great calming tunes to mellow you out after. Here are some of my recommendations for that:

1.  Breathe-Eddie Vedder
2. The Forest- Jose Gonzalez
3.  My Silver Lining- First Aid Kit

4.) Lie on the floor

I have always been a big fan of the floor, my roommates used to call me the floor sitter. It can be tempting to stay in your bed when you feel so crappy, but the act of just lying down in a different place for awhile can reset your mind and get you thinking differently.

5.) Do some gentle stretches

If you can’t exercise, just do a few simple stretches while you’re on the floor. I personally love getting into the Happy Baby Yoga Pose. I swear, an automatic smile goes on my face every time I raise my legs up in the air and pretend to be a baby.

6.) Drink  lots of water or tea

Water really helps cleanse your whole system. A steaming cup of tea is great for calming the senses.

7.) Take a bath

A bath doesn’t just relax you, it helps you sweat, which will help get the toxins out of the system. See the Wellness Mama’s blog for some great detox bath ideas, I love this blog, she is amazing.

8.) Give into your TV pity party- just a little

While I refrained from watching an entire season of Game of Thrones in one day, I did let myself watch some more TV than I normally do. I knew that watching TV all day long would make me feel even crappier though, so I limited myself to 3-4 hours maximum in one day.

10.) Acupuncture

Acupuncture is a wonderful tool to help with many chronic illness. I personally have greatly benefited from acupuncture and I think it’s especially helpful if you are having a symptom flare up. It helps support your body do what it needs to do and gives you some nice meditation time. Look for a low cost acupuncture clinic in your area.

11.) Journal

While I didn’t feel competent enough to write a blog post, I could certain spill out my emotions on a page and just vent or write some realizations I was coming to during this time.

12.) Doodle and Color!

Simple doodling, or zentangling, lets you focus solely on a simple art design and gets your mind off of the pain your body is in. Adult coloring is also fabulous! I highly recommend investing in an adult coloring book, they are becoming all the rage these days as more and more research is showing how good it is for your brain.

13.) Let go of Expectations and Open Yourself Up to New Learning Experiences

Give yourself a break during this time. On a normal day with chronic illness it can feel great to accomplish those simple things and when you can’t, it can be emotionally devastating. But it doesn’t have to be. I tried to focus on what the Universe  was trying to teach me during this time, what was still at my disposal. When illness completely sidelines us, it can be a great self-reflection opportunity to be challenged to connect with our inner spirit and something greater than ourselves. I can’t say that I loved these three days, but it definitely gave me an opportunity to get creative with my self care and focus on my spirituality more. It was kind a like mind cleansing process as much as a body cleansing.

Self-Care University

I should be an expert on how to live at home and deal with health problems, but alas I am not. In fact, I am just starting to learn how to be sick and not live a completely miserable life. This is the third time I have had to move home for my health and this time I am determined to do it right.

Why is self-care so important with chronic illness? Sometimes it’s difficult to explain to people the difference between pampering and self-care. Chronic illness puts an incredible amount of emotional and mental strain on a person. Letting your body and mind relax is essential to letting your body, heal, rest and function at its optimal level. Self-care activities help your sick body relax amidst the chaos of an illness and give your body the best fighting chance to heal. It’s not pampering; it is one of your daily medicines to help keep your illness and symptoms in check.

Previously, I moved home and basically buried my head in a pillow until the nightmare passed, but now there is no telling when this one will pass. So instead of accepting defeat, I have to work on creating a life for myself around my illness. I have always been the type of person who thrives doing multiple activities; I can never seem to dedicate myself to one thing. I think one of the reasons I liked college so much was because I was able to be so many different things.  So I am grabbing this sickness by the bull’s horns and creating my own self-care course schedule.

I have nicknamed this time of my life “Self-Care University” because that is what it feels like. Without work or many social distractions in my life, a heavy class schedule on self care is just what the doctor ordered. Here is a list of activities and practices I am doing on a regular basis to keep my mental sanity in check. If you are dealing with a chronic illness or just stressed in your life and need some mental relief take up one of these self care practices!

1. Yoga 101

I was really hesitant to incorporate any type of exercise into my routine because of my fatigue. I won’t be running a marathon any time soon, but a little gentle yoga every day is something I can tolerate. I have been using the Yoga Studio app on my iphone and doing the 15 or 30 minute beginner classes every morning before I eat breakfast. If my energy is especially low, I just do the Relaxation class that is super relaxing and easy. I end each yoga session with a 5 minute meditation. This has been an excellent way to begin my days, clearing my head and preparing for whatever is to come.

2. Meditation 200

Meditation has always been a wonderful outlet for me, but now it is especially helpful. I use the app Insight Timer on my iphone for silent or guided meditations. I have also attend some meditation meetup groups in the area. Meditation allows me to come into a greater sense of self and acceptance of my health issues. It lets me escape from my negative thoughts and the pressure to get well and truly just meet myself where I am at. I recently have been doing Chakra meditations to help realign me and promote healing. (Blog post to come soon about this!)

3. Piano100

This was an activity I was not expecting. However, there have been some days recently where I just don’t have the energy to leave my house and therefore I have to get creative. I started reviewing my scales and working on a few easy songs. It is a great activity to fill an hour when I just don’t know what to do with myself at home, but I don’t feel like watching anymore TV. It allows me to escape my reality for awhile and just enter the world of music for awhile.

4. Song/Singing/ Poem Writing 100

Along with piano, I have started to sing a little bit again. I was a singer for most of my life, but haven’t sung in a choir for a long time now. I’ve found that singing is a great emotional release for me. Especially since I can’t just go run out my stress or frustration anymore. Belting out a song about frustration really does it for me. I’ve even started writing a few of my own songs and singing them to myself. I doubt I will be the next youtube sensation, but it is a good therapeutic practice for me to cope.

5. Walking 150

A very simple, yet powerful activity if I’m feeling up to it. I used to love running and hiking. Cardio was my thing. I especially loved listening to pump up electronic or rap music and feeling like I was at a concert. I’ve realized I can still listen to that music, I just can’t do a hardcore workout to it. So I walk. I walk and I listen to a variety of music. Pump up, inspirational, sad, whatever I am in the mood for.

6. “Goofball” 101

Once in awhile, I just gotta put on a Lady Gaga song and dance around my room. Being a goofball and laughing at myself is sometimes the best medicine. It helps me remember that life can be fun and funny. Illness is serious, but I’m not! And I gotta remember that.

7. Blogging/Internet Communities 202

This blog! I am new to blogging, but I am enjoying expressing myself through writing and becoming involved in internet communities of chronically ill young adults.

8. Journaling 105

Different from blogging-very different. I journal every night. My mom gave me some Power Thought Cards that have a really nice inspirational message on each of them. Every night I read one of these cards and journal about it and about my day.

9. Art 303

I am looking forward to doing more arts and crafts, my Mom is an expert crafter and luckily my house is filled with craft materials. I have recently purchased a sketchbook and I plan on using it to sketch random things and also to do a lot of Zen doodling. Zen doodling is a great new art of doodling that has been called “yoga for your brain.” Check out the link to learn more about Zen doodling. https://www.zentangle.com/

10. Sleep 200

I struggle a lot with anxiety around sleep and now it is incredibly important for me to get as much sleep as possible. So I have started creating a really peaceful relaxing sleep routing. This includes not looking at screens at least one hour before I go to bed, no TV, no computer, no phone, no goggling chronic fatigue right before bedtime! (something I am working on) Here is my sleep routine that seems to be working for me most nights.

1.     Light a candle and burn some incense.
2.     Journal on a power thought card for 10-15 minutes.
3.     Meditate for 5 minutes.
4.     Read a book.

11. Reading 106

I seriously don’t think I’d finished a book for pleasure since I was in middle school and boy have I been missing out. I’ve already read about seven books this summer and have all been fantastic. Reading is such a wonderful escape and plops me right into someone else’s world for awhile. I also have started reading some books on accepting illness and how to cope with it. One of the best books I have read so far is Getting Real About Chronic Illness in your Twenties and Thirties by Laurie Edwards. It incorporates many stories from her life as well as several other young individuals faced with chronic illness. It definitely made me feel not so alone in this and provided some excellent insight into how to deal with this (book review to come shortly!).

12. Netflix 100

Okay, okay I admit it, I am not perfect and I do watch maybe 1-2 shows a day on netflix, but I limit it! My current obsession is Madam Secretary.

13. Foreign Languages 205

I love speaking Spanish, I especially love it when I can travel to Spanish speaking countries, but that just isn’t in the cards for me right now. Luckily I live in San Jose, CA where there are so many Spanish speaking communities! I go to a Meet Up group and practice my Spanish with native speakers and learners like me every week. I also do my best to read one Spanish news article a day and look up words. I also have started learning a little bit of Portuguese through the DuoLingo app on my phone.

14. Friends!!!

It’s easy to completely forget about my friends and start to believe that I have none while I am home. I didn’t grow up in San Jose and I don’t have many connections in this area. I used to be extremely extroverted, moving home to a place where I had  no social life was my worst nightmare. While I am learning to embrace the introvert side of me and genuinely enjoy spending time with my parents, I do miss my friends. I try to check in and ask myself if I have talked or texted any of my friends that week and if not, I shoot a text out to one of the many wonderful friends I am blessed to have in my life.

Advocate for Yourself:A Feminist Perspective

Throughout my journey in doctor’s offices and the healthcare system, I have been challenged with how to communicate my symptoms and attitude. Author Laurie Edward’s talks about falling into the “good patient” archetype in Getting Real About Chronic Illness in your Twenties and Thirties. She describes this archetype as patients putting on a good front for their providers or caretakers at the expense of their personal needs. For example, not saying anything to the nurse who just adjusted your bedding to an uncomfortable position. No one wants to be the cranky, demanding patient. We want to be liked and we want to like our providers, but this should not happen at the cost of our own needs. Remember: they do not have to live with the bedding sticking in your back, you do.

I fell into this archetype in many doctor’s appointments where I felt like my providers  were trying to convince me I was feeling better. I can’t tell you how many times my doctors or students greeted me by saying,  “You look like you’re doing better,” and I would respond, “Yea, maybe a little bit.” When in reality I felt terrible. I’ve come to realize that even on my worst days I can look fine. This is one of the most difficult aspects of dealing with an invisible illness; you don’t look sick, so people want to believe you are well or getting better. I am very careful now to give honest answers about how I am truly feeling and what I need from my providers. If we fall into the trap of telling doctors we are getting better when we still feel awful, it gives them a false sense of success. There are some exceptions of course, but in cases that are very grey, like mine, doctors need the motivation to keep digging to uncover the root cause of the illness. Don’t let them trick themselves and you into believing they have fixed you when you still feel awful.

Being a young woman definitely has affected my desire to please doctors and healthcare professionals. As women, we are bred people pleasers. We are not allowed to be grumpy, cranky, irritable, angry, etc. This is something I am slowly learning to break out of because we absolutely have the right to be upset by how we are feeling. You are allowed to state exactly how you feel without sugar coating it. I used to give answers like, “Well maybe the medication is working a little,” or “Maybe my energy has gotten a little better.” When in reality, neither of these statements were true at all. I now respectively can say, “No that supplement didn’t work for me, I would like to try to something else,” or “My energy hasn’t improved at all, I felt terrible all week. I would like to focus on another treatment and get some different testing done.” I don’t need to be mean, but I am not going to be a pushover either.

I do not condone verbally abusing our providers or throwing temper tantrums in doctor’s offices. I don’t even like to make such strong binary categories between doctor and patient, because we are all human and it’s very possible your doctor has experienced something similar or had another great struggle in their life. We usually have no idea what is going on in their personal, professional, or health that could make them have an off day. Regardless, we do have the power to advocate our needs without being a jerk. I like to write down the main points I want to communicate with my doctor before my appointment. I think that this benefits us both. It prevents me from going into a doctor’s appointment and saying something cruel without meaning to, or letting my emotions get the best of me. It’s okay to be emotional, but I find that the clearer I can state exactly how I feel and what I want, the better results I get. So don’t be afraid to let your inner strength shine and state your needs!

If you catch yourself falling into the good patient archetype still, just notice it and ask yourself how you can meet it halfway. Sometimes it goes against every fiber of our being to bring out the demanding self. There is a huge stigma in our culture around being a diva or being high maintenance. We want to come off as the cool, easy going person that can handle everything with ease. I absolutely have tried to put up this front and I still struggle with it. But there is a way to combine that demanding diva with the cool headed easy going gal. Ask yourself, what is the best way to state your needs that will be respectful yet firm? You may even want to practice it in front of a mirror or on a friend!

So here are my tips to get the most out of a doctor’s appointment:

1. Write down the points you want to get across about your symptoms to your provider.
2. Write down any research you have been doing for future tests your want to consider.
3. Practice saying what you want to get across.
4. Stick to the facts.
5. Take a few deep breaths and practice separating your emotional state about your health from the facts that are happening before an appointment (Easier said than done, I myself have cried in many a doctor’s appointment. But like I said, when I can think more clearly apart from my emotions, more gets done in my appointments.)
6. Be conscious of the good patient archetype and notice if you feel that your provider is trying to convince you that you are getting better and don’t fall for it!
7. Remember your doctor is human too and probably doing the best they can, so respect that they are trying and resist from being cruel towards them.
8. Write down and ask questions that get to the heart of an issue to ensure they have done all they can, for example: What conditions this test has ruled out? Is there any further testing to be done to see if this condition exists?
9. If your intuition says that this provider is not doing all they can, trust your gut and have the courage to change directions.