Illness Update and Ehlers-Danlos Syndrome: January 2018

Hello, Blog Babes. I’ve been out of commission for a while. Allow me to explain. There comes a time in chronic illness where you have to feel some control and stability over suffering. I came up with defense mechanisms. I created a wall between myself and the world because I didn’t want to be constantly faced with the dreams and desires that were no longer accessible. When a research-based system didn’t have answers for me, it felt like I was wrong. There was so much hubris in place that prideful doctors made me feel like I was mentally unstable, that I was giving them inconsistent or unreliable information, and that was why they couldn’t help me. Having been under personal scrutiny for about a year, of course I withdrew from the “help” of Western medicine.

Woman Suffering From Depression Sitting On Bed In Pajamas

I took a break, spent some time with family. I went off the feeding tube that kept landing me in the ER, got a puppy. I Moved to Washington, and moved back to Utah. At this point, my symptoms weren’t ideal, but they were stable. I was able to walk without fainting most days. I was able to drive without too much dizziness. I was able to eat, not enough, but enough that I wasn’t risking heart failure. I just wanted to feel something resembling normalcy instead of being on a hospital bed with an IV in my arm all the time.

Eventually, I decided that wasn’t enough. I’m a fighter. I’d rather go down swinging than accept that “this is it” for me. Sometimes, all that kept me going was the thought that I might save someone else from future suffering- that I might be anecdotal research to contribute to future cases of neurological and digestive disorders that are currently under researched. It would be selfish of me to give up because not only would I be giving up on sufferers still searching for cures, I would be giving in to a self-serving system that is ignoring the illnesses inhibiting the lives of millions of capable and young women. This might seem a little condescending, but it’s actually really bleak. Only when I could no longer find any reward to existing in my own skin did I look outside for survival.

I didn’t leave out the term “men,” accidentally. There’s a reason that our medical system refuses to acknowledge and treat disorders like mine. At a rate of 4:1, chronic fatigue is suffered mostly by women. My neurological diagnosis, POTS, which is responsible for my abnormal blood pressure, heart rate, and constant dizziness, is suffered by a female majority. My most prominent GI symptoms are caused by SMA syndrome, which is also seen much more frequently in women. In fact, there are only about 400 cases of SMAS in medically recorded history, probably because it is so frequently confused with anorexia nervosa.
As you can tell, my chronic illness journey has become pretty political. Don’t like it? How nice that you’re able-bodied, and that gender oppression doesn’t smack you in the face every morning. Now, go watch your Fox News. Anyway, this pattern of medically unexplained illness suffered mostly by women led me to some new findings. Interestingly, around the same time, a new specialist began evaluating me for another largely-female condition: Ehlers-Danlos syndrome


Ehlers-Danlos Syndrome (EDS) is “a heterogeneous group of congenital connective tissue disorders thought to be caused by mutations in genes coding for collagen proteins source. The connective tissue a person with EDS is built with is not structured the way it should be. With a badly-constructed or processed connective tissue, some or all of the tissue in the EDS-affected body can be pulled beyond normal limits which causes damage. Connective tissue can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on. Source

Any doctor could have noticed signs of Ehlers-Danlos in my medical work-ups years ago. Lots of qualities of the illness are clearly visible. For example, flexibility, softness and elasticity of skin, genetically inconsistent thinness. But, since the disorder is commonly unrecognized by Western medicine, it never occured to any of the specialists I’ve seen.

Part of the reason I was only partially diagnosed for so long is that doctors were looking for a gastrointestinal illness. While my condition actually affects all connective tissue, it’s just more obviously affecting my digestive tract because my weight loss is so severe. Now, the trend of looking solely at my GI tract for solutions to my symptoms was an arrogant, uneducated mistake on the part of many doctors. I had told doctors that I had pain and tingling everywhere, not just my GI tract. I had explained that I had neurological symptoms like dizziness and sudden loss of control in my extremities. I even went on a neurological medication, and explained that when I lowered the dose, my digestive problems got worse, suggesting that the digestive problems were neurologically mediated. Soon after, I was given the neurological diagnosis, POTS, but my doctors went back and forth about how aggressively to treat, since the POTS was a “secondary diagnosis.”


After all of this frustration and continuous skepticism by critical practitioners, I was just as confused after months worth of testing and a feeding tube than I had been before. Now, this is often when people get really into naturopathic medicine and start chanting around fires in attempts to heal themselves. I’m not quite there yet. I’m all for Eastern healing, too, but I don’t think Western medicine has offered me all it has to offer. I believe in science. And I believe in the intelligence and good intentions of individual doctors working to improve a dysfunctional system. Furthermore, I believe in myself. I believe in four years of my own research and a seasoned bullshit-ometer finely tuned by four years of appointments with assholes telling me I have a mental problem or an eating disorder.

Believing in myself and seeking professional help aren’t mutually exclusive. I don’t believe that this is the quality of life I will always have, and I don’t believe in this treatment for all chronically ill women (or men). There is too much stigma in our medical system– there is a hierarchy that separates patients from research because of a prideful fraction of stubborn practitioners who reject up-and-coming experiments and more adaptive therapies. We are maintaining cyclic symptom-management and over prescription of pain medication and antidepressants to manage chronic illness, instead of digging for deeper knowledge and better understanding of the biological causes and solutions. I am living proof of an unfair and unbalanced system. I am also proof of the determination and stamina of Chronic illness warriors who will be part of the solution.


2016 Election– On Behalf of Respect and Equality


The morning of November 9th, I woke up disheartened, confused. The people around me are not who I thought they were. My country is not what I thought it was. Everything seemed dangerous and unstable. A social foundation I once perceived to be stable and supportive has collapsed– maybe it was an illusion to begin with. Maybe I have been lied to, entirely. Regardless, A system which boasted of protection has allowed a narcissistic predator to speak on my behalf, to make decisions that have access to my home, my loved ones, my future I am disgusted. I am afraid– afraid for the people around me, more hardworking and deserving than I, who will be more subject to ridicule, resistance, and rejection than they were just weeks ago. I am afraid that I will open my door, each morning, to a less welcoming world than I once knew.

This part of me, the part which speaks from stagnancy and fear, has been comfortable for far too long. American government has been corrupt and ineffective for as long as I’ve lived under its guidance and rule. I have fallen for a false sense of safety, and the empty promises of able, logical authority. My leaders act for majority with whom I do not agree, follow, or align. My government does not work for me, it works around me. How lucky for me that I have existed comfortably within its confines for so long. I was spoiled in both privilege and separation. Many have not been so lucky. Now, I, too, am threatened.

I am still lucky. I am far from hopeless. I am educated, strong in both will and intellect, and ready to combat sources of prejudice and corruption. There are people around me, however, who will face more fear, more restriction, and far more hate than I. This means, for those of us, still privileged and able, although saddened by are transitioning leadership, we have a responsibility to serve those in greater danger. It is no longer enough for us to shake our heads behind the screens of our laptops and TV’s. It is not time for us to fester and worry in corners while we allow a megalomaniac to manipulate his puppets in front of us. It is time for us all to confront a flawed system that is now screaming for help.

Stop crying. Stop sitting still. Feel the heaviness, but carry it with you. Speak with your minority friends and acquaintances, and ask how they are feeling. If you identify with a minority group threatened by Trump and his supporters, do not lose confidence, allow yourself to be heard. I plan to write letters, to sign petitions, to peacefully protest. You should, too.

Things are not okay. Things are wrong, grim, menacing. But I am okay. And you are okay. We are strong. I am grateful for the facets of government that inhibit too much power in the hands of any one leader. I am grateful for checks and balances (although they are fewer, considering our current Republican rule in Congress). I am grateful for the privilege I have lived under for so long. I am even grateful for the opportunity to stand on behalf of women, LGBTQ, and racial minorities.

Remember that not everyone around you suddenly believes what the presidential administration preaches. There are just as many people ready to combat government as there are ready to serve it. So those who believe in change and equality, respect for diversity and environment, those who see dysfunction and wish to reverse it, those who believe in the beauty of other cultures and global relationships, stand with me. Those who have come to these conclusions long before I have, teach me. I am heavy. I am angry. I am confused. And I want to be. I want to do something about it.

Here, I have listed links to some petitions that may be some good, small places to start acting:

Electoral College: Make Hillary Clinton President on December 19

Do Not Allow Myron Ebell to Lead the EPA Transition


Letter to my Past Self


Dear Summer,

Feel your body, your muscles. I don’t mean touch them. Just feel them, being there. They are so strong. They feel so right– so comfortable and relaxed. One day, you will lose that feeling. Your body will be constantly tense and tremulous, and your muscles will constantly ache like you’ve just run a marathon. Your limbs won’t move the way you want them to. So feel them now. Your body is so at ease. Your strength and dexterity are such gifts.

Wiggle your fingers and toes. That feeling of control over your body will leave you soon. The fingers will move on their own, sometimes, and sometimes, they won’t even be able to grip a pencil. It sounds strange, I know. You don’t have to believe me. You’ll feel it soon enough.

Stand up and walk. You are not dizzy. You are stable and poised. Your legs make strong foundations. There will be days when you cannot walk at all. When you stand, you will grow dizzy, your eyes will become dark, and you will fall. You are strong now, and you will be strong then. Remember this.
Go for long walks, whenever you can. Always take the scenic route. People watch. Crunch the fallen leaves beneath your feet. It sounds clichéd, I know, but you will not always notice these things, or perceive them as you do now. Pain colors leaves gray, and makes walking a struggle.

Stop for a latte, with real milk. Buy a croissant with it. You love them both, and soon, they will make your stomach turn. Everything will make you nauseated. Things that everyone else eats regularly will make you violently ill. Everyone will tell you it’s because you have an eating disorder.

Stay out late. Refuse to have a strict schedule. Instead, have things to do and people to see. Study sometimes. Sit in class and love learning. Then go out. Love your friends– do fun and stupid things with them. One day, you will have little energy or focus for these things. Anxiety will prevent you from leaving the house, at all.

You love school. Notice how much passion you have for education. Don’t let it leave, even when your abilities become compromised. Life will try to rip that passion from your weak, battered hands. Don’t let it. Learning gives you purpose.

Listen to good music. Drink good beer. When you’re sick, your headaches will warrant silence, and beer will become nauseous to you.

Notice how clear-headed you are. You can read and write for hours. Soon, it will feel like a concrete wall sits in your head, separating you from your thoughts. When you reach them, they are cloudy and unformed.

Stop scolding yourself for how much you’re working, how intensely you’re studying. You are not lazy. You are not stupid. Your time and your experiences are precious. You are forgetting to enjoy the gifts around you because you are busy twisting them into responsibilities, and check-marks on a calendar. The calendar is unimportant. Time is fleeting. Your life is already full.

Stroke your hair. It is healthy and thick. Soon, it will begin to fall out. You will look in the mirror and cry, telling yourself you’ve lost the last part of your appearance you took pride in, the last part of you that didn’t look shriveled and sick.

One morning, you will black out completely, and fall into the wall in your bedroom. You go to the doctor, and she tells you it’s stress. It’s not stress. Don’t listen.
Your arms and legs are weaker now. You have to park closer to buildings. When you come home from work, you sit in your car for a while, because you can’t imagine having the strength to walk to the front door. Don’t lose hope yet. Hold fast to the strength and dexterity you still have. It will be even further diminished.

You’re dizzy all the time, now. That episode where you blacked out happens every day. Your stomach hurts all the time, too. You can’t focus in class. Your muscles cramp up so badly you have to lie in a fetal position for hours at a time. You feel like a zombie. Food makes you vomit and gives you migraines. You have little energy, but you can still sleep. Soon, you will have insomnia, too.
You are scared. You think you have MS or Lupus, or even cancer. Something is terribly wrong, and the doctors won’t listen to you. You go to a new clinic and they tell you to stop eating wheat and get more rest. You are a young girl with emotional problems. You are not sick. Remember, Summer, you are okay. The doctors are wrong. You are strong and smart.

You think everything is gone, your life is all wrong. It’s not. Love everything you loved before. Keep living. Reach out. Don’t hide. This is not your fault. Remember, Summer, you are okay. You are strong and smart.

Don’t pity yourself, and don’t ask for pity. Notice the “disabled” people around you, and commend them for how strong they are. Think about how sad it is that all the healthy people are so oblivious of their able-bodied privilege– hope that they savor some of the beauty. Your eyes have been opened. Things you thought belonged to you were never really yours, and now you hold fast to all the fleeting gifts coming into your little world. Be grateful. Those gifts may stay, or they may go.

Always write. Always smell the coffee. Always pet the dogs.




I am in recovery. I’ve finally learned that recovery has very little to do with everything I’ve been taught with which to equate it. Recovery is not prescribed therapy, diagnosis, food, or drugs. It has to do with the absence of those things, but also the presence of them, all together– pieces of a contentedly imperfect whole. Recovery has to do with my ability to acknowledge those elements of my life, then place my focus elsewhere. My freedom comes from a lack of obsession toward any one of these so-called “cures”. My happiness comes from my aptitude for life alongside, but not compromised by illness.

I take minimal medication. Two drugs help make my symptoms bearable, and neither are addictive or have dangerous side effects. I don’t expect to find a miracle drug that will solve all of my problems, nor do I rely on the comforts of antidepressants or pain killers. I don’t find the need to numb myself to make life bearable. I no longer assume that I need a diagnosis to make progress in treating or accepting my situation. A label would make my illness understandable to the rest of the world– not to me. I no longer dwell on what I can and cannot consume. Usually I eat for health, sometimes I eat for enjoyment, and both are okay. I no longer waste my time with restrictive therapy diets. I now eat, and move on, with or without pain or other symptoms.

My illness is restrictive, but it doesn’t eliminate all opportunities for enjoyment and fulfillment My limitations determine the ways in which I act and experience life, but they don’t prevent me from finding ways to do so anyway. Once I realized this, my life took a huge turn. I no longer need to focus on fighting my illness before I return to life. I was spending so much time fighting my demons, I didn’t have the awareness to realize I was actually worshiping them. Now, my obstacles move with me, and I with them. I accept them, and continue to live and learn.

Lastly, I don’t think I will ever be recovered, nor do I need to be. My recovery will be a lifelong process, and my illness may or may not ever leave or subside. However, the world has too many beautiful things to offer for me to lose myself in negativity.

Illness is still difficult to cope with. I still have bad days– that’s okay. My symptoms are not optional. My suffering is. True suffering comes from my interpretation of my circumstances. I can easily chose not to harbor resentment, not to feel hopeless, and not to blame myself or anyone else. Instead, I choose to appreciate my challenges, and continue to love the life I’ve been gifted.

Friends are the best medicine.
Friends are the best medicine.

Self-preservation and Asking for Help


There’s a lot of expertise out there. There are a lot of specialists who spend years studying a lot of information, and there are a lot of cocky people claiming “my way is the right way.” When we admit “my expertise is not enough…I need help,” we have to navigate those waters, and it becomes confusing. The path to healing and resolution is indirect and unpaved. To make positive change happen, we need to admit our imperfection, ask for help, but avoid being taken advantage of. We have to let go of control, but maintain confidence.

I was admitted to the hospital last week, which felt good in some ways. It helped externalize some of the pressure, and allowed me to rest while I was assured that experts would help me figure out my problems. I was managing with a team, instead of alone. However, there were also lots of doctors ready to twist my situation into something it wasn’t, or tell me things about myself that were more harmful than helpful. Doctors do not have privileged access to all knowledge, and they make mistakes often. We have to remember that authorities are not deities.

When we’re talking about our own healing, no one expert is going to have all the answers we need because he/she studies concepts, not individuals. We have to enter into new ways of thinking with open minds, but don’t take anything as doctrine– keep the knowledge that applies to you, and discard the rest. And NEVER disregard your own discernment– you are the authority on your own well being, and you need to protect yourself.

You can admit that you’ve made mistakes, that you need help, and still reserve the right to say “no, this is wrong for me.” Admitting that you’ve made mistakes should make you even more confident in your ability to discern right from wrong and distinguish true from false because you’ve just done those things with huge bias. You called bullshit on yourself.

There will always be a hard-headed, over-opinionated type-A personality, trying to fix you, claiming his/her way is the only way. You are stronger. You have seen past his/her way of thinking. You have recognized human error, and you have to keep an open mind always, because every situation and every individual requires unique consideration and cumulative understanding. You are not a page in a textbook, you are not a single case study, or a google search results page. You do not deserve to be viewed as any of those things.

Furthermore, you can’t let one admission of error open you up to all others, or make you think less of yourself. Don’t ever think, “because I have this problem, all the bad things everyone says about me are true.” Humility should make you think more of yourself. You are above hubris. You are expansive. You are strong. You have seen truth, will see more truth, and that will open you up to the help and healing you need.


Turning over A New Leaf– Dealing with Trauma


Your society preaches self-deprivation and excessive self-expectation- It tells you to be strong and build “good” character. So you learn to worship self-control and discipline. You learn that you have to be the right kind of person and live the right kind of life. You’re supposed to be a hard worker. Sit down and shut up. Follow the social norms. Ignore your impulses. Then, you’ve reached your “goals.” You made yourself fit the box. If you’re a girl, you’re supposed to be thin, keep your mouth shut, don’t try to drive a big truck. If you’re a boy, you’re supposed to be stoic, be strong, yell when someone puts the sportsball in the sportsplace.

Then you go home and you’re left with the wrong parts of yourself. You see deficits that start to gnaw at your confidence and make you think you’re not enough– “I’m weak. I’m fat. I’m selfish. I’m stupid.” We tell ourselves constantly we’re beneath our own standards. These character flaws are our downfalls. They cannot be tolerated. We have to beat them into submission, discipline ourselves to hide them.

The standards and the distractions change and fade. And eventually we’re left with all of these “inadequacies”– The parts of ourselves that don’t fit. The parts that are too lazy, needy, inadequate, untrained. We’re left with run-down, misshapen vehicles that doesn’t seem to drive well on the roads where we drove before. And we have to find ways to make the vehicles work, to fuel them, and use them for what they are.

This post is about to get sad, and serious, and honest. I’ve recently accepted new truths about myself, and I want to be open about them. I want to be brave. I am brave, and talking about problems out loud helps us fear them less and move past them further. Soon, I’m going to tell you I’m still sick. I’m sicker than I was before. I’m also going to tell you I have an eating disorder. You read that correctly. I also have a cat. Either of those things could mean everything and nothing about me, depending on how you want to judge me.

When I came into the trauma of chronic illness, my imperfection became me. It felt like I had lost everything I liked about myself. The real me had disappeared, and I was left with an unusable shell. I disappeared. I stopped writing. I had nothing of value to say. I had no right to speak to the world. I was a “sick girl,” debilitated, unimportant, expendable.

I couldn’t overwork myself anymore. I wasn’t going to school, or headed to a noble profession. Illness was taking a toll on my body, and I wasn’t attractive enough anymore. I was too weak to decide how productive to be, or maintain an energetic and spunky personality all the time. I couldn’t earn my place in the world anymore, and I didn’t fit in the pretty box I was supposed to fit in, so I was nothing.

I thought the way to overcome the illness was to hide the undesirable qualities until I had enough strength to be the right person again. I would train my sick body to be strong again. I would use self-control and knowledge to discipline my body into healing. I would eat the right things, use the right supplements, change my lifestyle, study the necessary information. Then, I would be better. I would beat the illness. I would tease and train the lazy, useless body into something acceptable. Anyone who’s been through abuse or other trauma knows this thinking well. We blame ourselves and think we can make the terrible things smaller by over-controlling unrelated aspects of our lives.

Stop. There is nothing to overcome. You are not your trauma, or your flaws. I was never my illness. I was Summer, with an illness on the side. I was always a whole person. Without school, without my activity level, without my after-school jobs and volunteer work. And the sick Summer was not deficient. She was not unable. She didn’t need training, or lack discipline or strength. But every time I came home and felt weak and tired, I told myself I had to do something to fix it. I was being the wrong kind of sick person. If I were doing enough therapy, living correctly, acting the way I was supposed to, I would be this sick. Even after I found out that I had very real immune and neurological problems causing the symptoms, I told myself it had to be partly my fault that I wasn’t better off– I wasn’t “recovering.”


Every time I got sick after a meal, I told myself I had eaten the wrong things and caused my symptoms. I tried elimination diet after elimination diet and got the same results. I became scared to eat, and I felt undeserving of food because I only deserved food if I could find out what sort of diet would heal me. A combination of my disordered thinking and digestive pain caused me to drop to 85 lbs. I was literally disappearing. I didn’t cause my digestive problems, but I made them much worse. And now, I had fewer abilities, so I deserved even less. I didn’t have enough self-control to heal myself. I couldn’t sleep. I couldn’t exercise, I couldn’t focus, I couldn’t calm down.

What I needed was nourishment. What I needed was acceptance. I needed to make space for myself in a world that always tells us we’re “less than.” I needed to fight the situation, not myself. Denial is not determination. I wasn’t being “stronger” than the illness. I saw doctors and took the drugs they told me to. I exhausted myself doing medical test after medical test. I had twenty vials of blood drawn twice weekly. I obsessively read chronic illness blogs and books and took the supplements they advocated. I did yoga and other “restorative” exercise that was supposed to make me better. But I hated myself and my illness. I must have been doing it all wrong because I was still sick. I still hurt. My muscles still didn’t work the same. I still had dizziness and brain fog.

I am still learning how to love myself. How to accept my life with illness. How to nourish instead of deprive myself. How to say
“I deserve to be here. Screw you pain. Screw you eating disorder. Screw you, self-blame! I’m going to have a life anyway!”
I’m still learning that I have things to contribute, even when I can’t be the picture-perfect girl I wanted to be. And most of all, I’m learning that being less “perfect” than I wanted to be may be even more of a gift.

But I’m back. I’m making space for myself. Just as we all should. I’m done lying to myself. I’m done hiding. I’m done accepting anything less than a full life, with bumpy edges and rocky roads. I’m done coming home and crying every night because my body didn’t work the way I wanted it to that day. Instead, I’ll make it a goal to throw a well-deserved (but succinct) fit, do some yoga, pour a glass of wine, and move on. I’ll stop being scared of everything I put in my body, and I’ll enjoy my morning coffee. I’ll eat more cupcakes. Because all the kale in the Northern Hemisphere hasn’t healed me yet. I’ll go for a walk when I want to, instead of when I feel like I “should.” And if I don’t do my “therapy” everyday, I won’t beat myself up about it. I’ll spend more time with my family. I’ll be more honest with my friends. Because I’ve wasted too much time being the “right kind” of sick person. I’ve wasted too much time hating myself for being a strong, able fighter. I’m done spending every minute fighting things I can’t control, and missing the things I should be celebrating.

Strength and Understanding Through the Storm


Recently, I’ve gone through a really rough period in my life. I know– you would think that most of my dealing with chronic illness could be considered a “rough period.” I thought I’d gone through enough “rough periods” for a lifetime– that I’d hit rock bottom when I had to leave work and school, when I had to get my feeding tube, when I learned that there would be days I would wake up without the ability to walk. I thought I had passed life’s tests of strength, made it through my crucible. Until the past month, I had no idea what hardship was coming, or how many small comforts I still had.

Then the storm came. I moved from Dugway back to Salt Lake City– a welcome transition. However, a reasonable amount of stress on a healthy body is a stress overload for mine. The whole situation wreaked havoc on my muscles, compromised my motor skills, gave me constant headaches and weakness in my limbs. It also increased my digestive problems, so I ended up at my lowest weight yet, 89 lbs at 5’10”. My body was in constant fight-or-flight and extreme starvation. I didn’t know what to do, or whether I was going to make it. My doctors didn’t have any immediate answers, so I had to resort to my own knowledge and small amounts of self-soothing to make it through the move. Then, I went through a breakup with my boyfriend of three years. I’ve chosen not to make him a central part of this blog, but he was a huge part of my life for a long time, and losing him was confusing and hard.

It felt like my illness had taken everything from me. At this point, I was literally just surviving, not living, not feeling. There was so little left to hang on to.

But I’m still here. I’m still moving, living, growing. I’ve found that I have strength and persistence that I could never have comprehended before life demanded it of me. I’ve learned that I have to find gratitude for the small comforts in my life, because everything we take for granted is never really ours, and it disappears without warning. I now know that I can survive– that I can find strength when everything falls apart. For now, I’m living by my own strength and understanding, and I know that my illness cannot take those from me.

Screenshot 2015-09-03 at 8.02.16 PM

Guest Post from Lemons ‘n Lyme: What it Means to be Young and Chronically Ill

Hello my divas (and whatever the male equivalent is)! Today’s post is going to be something a little different than your used to– it’s my first guest post! I’m thrilled to be introducing you to Victoria from Lemons ‘n Lyme. You should remember her blog from last week’s Friday Favorites. Lemons ‘n Lyme is full of a lot of good things, from an awesome paleo, anti-inflammatory recipe page to a lot of strong and inspirational thoughts from a chronically ill but determined little lady. I’m honored to have her appear on Sedentary Superwoman, and I know you’ll all love what she has to say.

Victoria: Hello lovely followers of Summer’s blog! I am so excited to be guest posting today. I am going to be talking about the social and emotional effects of having a chronic illness as a young person. This is a topic that has been on my mind a lot lately, so Summer’s timing in asking me to guest post was perfect.
First, let me start by introducing myself. I run a blog called Lemons ‘N Lyme which chronicles my experiences and treatment with chronic Lyme disease. I LOVE to experiment in the kitchen and I use my blog as a place to share the Lyme-friendly recipes I develop. I could spend a lot of time talking about my blog and diet but since that isn’t the topic today, feel free to check out my blog for more details about my story and for lots of yummy recipes!

As I said, the impact of having a chronic illness as a young person has been weighing heavily on my mind lately. After over 12 years of symptoms and 3.5 years of treatment, why wouldn’t it? When you have a chronic illness, your experiences and views of the world differ from those who are “healthy.” It can be very isolating, both emotionally and socially. You can’t participate in all of the activities your friends and family are participating in. You can’t eat all the same food or even indulge in just one little taste without paying some serious consequences. It really does take a toll on you after awhile.
I’m sure by now we are all familiar with the acronym FOMO, fear of missing out. I’m beyond that now, it’s FOF (fear of a flair) for me if I do participate. Your younger years are supposed to be about adventures, late nights, travelling, trying new things, and copious amounts of fun. You’re trying to find yourself, learn, and do some dumb stuff along the way ;). My version of all of that is very different from the average 20-year olds. Taking a risk means going out to dinner or staying up past 10. Fun constitutes leaving my couch to get a Redbox instead of sticking to the same old Netflix. Anyway, you get the idea. Those with a chronic illness are in a very different world. It isn’t easy, but you have to redefine what fun, adventure, and living means.


Before I was diagnosed and I had no clue what was wrong with me, I tried my hardest to push through and ignore my symptoms. After all, I had been told I was making them up, my tests were clear, and nothing was wrong with me. I felt incredibly alone and depressed. “This can’t be how everyone feels all the time? I feel miserable!” I thought. Nobody could justify my symptoms or even begin to understand how I felt. Once I was finally diagnosed, I felt a sense of relief to have an answer, to know I wasn’t making things up, and to know that people would understand because my symptoms had a name.

This wasn’t exactly the case, though. Naming my illness did not make it any easier for people to understand what I dealt with. Trying to explain my symptoms couldn’t even begin to convey how I actually felt. There weren’t words for how exhausted I was and for how much pain I was in.

I ended up doing intensive treatment that involved antibiotics, herbs, and supplements that had to be perfectly timed around each other and around food. Then, IV antibiotics were added. This meant hooking myself up to an IV twice a day, every day, for 7 months. I couldn’t spend the night out on the town or go camping for the weekend because I had to be home for IV’s that needed to be exactly 12 hours apart.
It is hard for others to fully comprehend how chronic disease can make you feel because they have never experienced a chronic illness themselves. This can leave you feeling completely isolated. My friends could go swimming, hiking, and dancing and I had to be home by 7 to prep for an IV before falling asleep at 9. I can’t just grab a beer with a friend after work if I wanted too. I can’t have the girls over to bake cookies and binge on ice cream while watching chick flicks for a night. I can’t pick up and leave for a weekend adventure because if I don’t stick to my treatment regimen, I’ll pay the consequences. Nothing can be last minute, every event must be planned out so I can rest in preparation, designate recovery days after, and pack all of my supplements, medications, and Victoria-approved food.
This can be very emotionally isolating, as well, since people can’t fully comprehend why you need to eat a certain way or forgo an invitation out. It is emotionally challenging to cope with constant symptoms, too. A break for just one day would be nice! The emotional toll that chronic illness has can make it very easy to fall into a rut that seems impossible to climb out of. But that is when it is important to develop coping mechanisms and learn to find joy in what you can do. This takes time and experience to figure out what can make you happy and how to deal with the bad days.

I’ve found art therapy to be very anxiety reducing and a way to detach from a bad day. I love to cook, so when I have the energy to develop recipes, I immerse myself in the kitchen. Even though I can’t always spend time with them, I have some amazing friends who I can call, either to vent to or to help get my mind off my current situation. I’ve also connected with many other chronic illness warriors out there and I’m able to email, text, and talk with them about our experiences. This makes me feel less alone and as if I’m missing out. We share similar inabilities to socialize like “normal” people, but can connect on that level and socialize with each other from the comfort of our own couches.

It’s a challenging journey we are travelling through every day and it’s even more challenging for those around us to understand our world. If you are a fellow spoonie, I’m sure you can relate to what I’ve written, and if you’re a friend or relative of someone who suffers from a chronic illness then I hope this post helps you understand, even just a little bit.

Friday Favorites #3

Happy Friday, all. Welcome to Friday Favorites #3.

Aloe Vera for Acid Reflux


I have just about every digestive problem you’ve ever heard of…all camped out in one body. I’m a lucky gal. That includes the more common symptom you’ve probably experienced– acid reflux. When GERD, or acid reflux symptoms get more extreme, they can completely alter appetite, activity levels, mood, and general quality of life. When I get a bad acid reflux attack, it even affects my breathing. My doctors’ first instinct was to put me on Proton Pump Inhibitors (like Zantac) which lead to nutrient deficiencies over time, and can lead to even more volatile acid production. Aloe Vera is a natural and safe alternative, and it works about 100 times better for me than prescription antacids. I take this brand, which has no taste. Since I started drinking aloe, My symptoms are much less frequent, and only about half as severe as they were before.

Lemons ‘n Lyme Blog

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Victoria, from Lemons ‘n Lyme was diagnosed with chronic Lyme Disease in college. She’s been on multiple antibiotic treatments, and followed her own anti-inflammatory protocols for years. She also follows the AIP (diet), which you’ll recognize from some of my posts, and has recently begun to treat SIBO. She is a Certified Personal Trainer, which means she managed to make it through college with chronic illness (wow!). This girl refuses to be victimized by her limitations, and her blog offers a lot of personality and insight. Victoria will be guest blogging on Sedentary Superwoman next week, so keep your eyes open.

Mango Cucumber Salsa


Noms! I’ve been eating this stuff on everything: coconut oil chips, fish, veggies, ice cream… I kid. But really, go make this. It’s delicious. If spicy is your thing, add some jalapeño. My stomach would hate me if I did that, but it sounds delicious.

1 mango
1/2 medium cucumber
1 bell pepper
1 handful fresh cilantro
1/4 red onion

Combine ingredients in blender or food processor and pulse until finely chopped. Of course, you could also do the old school thing and chop with a knife.

Of Monsters and Men Beneath the Skin

This album isn’t really new anymore, but if you haven’t hopped on the Beneath the Skin bandwagon yet, do it! I love these Icelandic weirdos, and I think this album is better than their first. It’s a little more introspective, and a little less myth/storytelling than My Head is an Animal. My favorite song is “Wolves Without Teeth.” The whole album is awesome, though. These guys are really good with cryptic metaphors and catchy melodies.

This Book: Aaron Lynch’s Though Contagion


This book is pretty incredible, so far. It’s based on the science of memetics, which is a newer realm of thought, developed by scientist Richard Dawkins. Memetics focuses on outlining the patterns and spread of human behavior. It’s sort of like an evolutionary exploration of thought. It was really interesting to see the science applied to religion and gender roles, especially. It’s hard to explore those fields without bias, but Lynch’s theories are fairly neutral and really fascinating.

My blogging assistant wishes you all a wonderful weekend!
My super trusty and adorable blogging assistant wishes you all a wonderful weekend!

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.


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.


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.


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