Living Well With Chronic Illness: A Book Review 

I thought I would share my thoughts on an amazingly good book I read recently called Living Well with Chronic Illness because it has a lot of really helpful information that I think anyone managing an undiagnosed or chronic condition can appreciate.

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Living Well with Chronic Illness, Joanna J. Charnas, LCSW, LICSW, (MSI Press, 2015.)

From the first page of the introduction throughout the rest of the book, author and chronic illness patient Joanna Charnas present an accurate portrayal of what it’s like to live with an undiagnosed or chronic condition in such a way that you feel hopeful for the future. I am a young woman who has spent more than 20 years feeling lost within the maze of the American healthcare system in an attempt to obtain a clinical diagnosis that could somehow explain the unrelenting and progressive constellation of symptoms I experienced since early childhood. So, I know all too well what it’s like to feel as though the only option left is to give up when doctors cannot give you the answer you are looking for. Although it’s a daunting task to find a balance between managing symptoms and having some semblance of a normal life, the book Living Well with Chronic Illness attempts to minimize the impact that chronic illness has on quality of life by refocusing efforts towards the elimination of biological, psychological, and social fatigue – all of which serve as poignant reminders of disability or infirmity. Through the use of both personal and professional examples that are drawn directly from Charnas’ own experiences, Living Well with Chronic Illness reads as though the author is sitting down right in front of you as she recounts her personal story of where she began and where she is today, along with all the lessons she had to learn along the way. So, grab a cup of coffee (or whatever beverage you enjoy) and prepare to be enlightened.

Each chapter represents a unique challenge of being sick and then advises the reader as to how to effectively cope with such adversities in order to regain control of their health and go on to live a much happier and more fulfilling existence in spite of declining vitality. Part I tackles the more emotional aspects of chronic illness by first acknowledging individual feelings (e.g., anxiety, fear, anger, hope) and then suggesting a variety of therapies that can help change negative attitudes into positive ones through humorous expression and general acceptance. Part II focuses on the special issues of undiagnosed or chronic illness while guiding readers through strategies for practical management. In fact, Part II also contains my absolute favorite chapter of the entire book entitled “Your Body Knows Best: Listen to It!” Part III concentrates on the more serious topics that unfortunately pop up in illness or disability, including the various laws governing the practice of medicine, patient rights or responsibilities, and the financial concerns of illness or disability. Finally, Part IV opens up about the spiritual considerations of those who are sick, such as the maintenance of faith and hope, while equivocally accommodating the personal or religious beliefs and values of readers, before closing with an important reminder of all the good things that come out of doing the harder things in life. In chronic illness, these are the gifts of empathy, strength, self-confidence, a sense of community, and the ability to grow or develop into a better, stronger version of our true self. Whether you are a newcomer, a veteran, a practitioner, or just somebody who wants to learn more about the realities of living with an invisible or chronic disease, I promise you will find some value within the pages of this book.


Joanna Charnas has been a social worker for almost thirty years.  She is a licensed psychotherapist in two states with a specialty in group therapy, and has spent the last 20 years working with people with physical and mental illness.  She’s a blogger on the Huffington Post and writes articles for an international health website. Living Well With Chronic Illness is Joanna’s first book.

To learn more about the author, please visit her website at https://joannacharnas.wordpress.com/about/

You can also order a copy of Living Well with Chronic Illness from Amazon.com.

10 Ways That Living with a Chronic Illness is Like Training for the Olympics

Update 8/18/2016 – This article was featured on  TheMighty.com website on August 9, 2016, which is such a huge honor. Thank you all for your continued love and support.

If you’d like to read the shorter, edited version of this post on The Mighty’s Website, please visit https://themighty.com/2016/08/how-training-for-olympics-is-like-having-a-chronic-illness/


As a patient who has not only been diagnosed with multiple rare forms of chronic illness and as a former athlete that competed on the national level in swimming,  I feel that I offer a unique perspective as to how some aspects of day-to-day life are quite similar between the polar opposites of having a chronic illness and training to compete in the Olympics. Here are some of the

Top 10 Ways That Living with a Chronic Illness

is Like Training for the Olympics:

10. You’re friends and family don’t understand why you never hang out with them. 

Obviously, training for the Olympics requires a great deal of  time and dedication. In an effort to become one of the top athletes in the country,  sacrifices have to be made and one of the first things to go is generally your social life. Spending months at a time at training camps or traveling for competitions takes you away from your family and most days it was far too tiring to even think about going out and socializing with my friends, let alone actually doing it.

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Now that I have a chronic illness, there are days when I can barely walk to the bathroom by myself, let alone take a shower. I’m lucky if I make all of my scheduled doctor appointments or medical tests even though I have assistance in getting there since I can no longer drive. Having a social life on top of it – that’s honestly asking too much of myself. The majority of people can’t understand how truly difficult it is to do the basic things that many people take for granted, such as going to the grocery store or cooking dinner. When you become sick while still young, though, the discrepancies between living a so-called normal life and that of “the sick life” are far more dramatic in comparison. Friends just simply don’t have the capacity to comprehend why their formerly “fun friend” is suddenly stuck at home on the couch. As they say – you don’t really get it until you get it.

9. You’re always tired, regardless of how much you sleep. 

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When you’re working your body hard, either to make your Olympic dreams come true or to merely make it through the day, fatigue seems to have a tendency continually build up to the point where you don’t know what it’s like to NOT feel tired anymore. No matter how much you sleep – it could be 8 hours, 12 hours, or 2 hours – it all feels the same.

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Professional athletes are likely to suffer from a condition called Overtraining syndrome (OTS) if they work themselves too hard over a long period of time. As Kreher & Schwartz (2012) explain, “athletes train to increase performance. Performance increases are achieved through increased training loads. Increased loads are tolerated only through interspersed periods of rest and recovery—training periodization. Overreaching is considered an accumulation of training load that leads to performance decrements requiring days to weeks for recovery. Overreaching followed by appropriate rest can ultimately lead to performance increases. However, if overreaching is extreme and combined with an additional stressor, overtraining syndrome (OTS) may result. OTS may be caused by systemic inflammation and subsequent effects on the central nervous system, including depressed mood, central fatigue, and resultant neurohormonal changes” (p. 128). However, depending on the pathophysiology and etiology of the condition, a number of treatment options are available, including hormone therapy, cognitive or physical therapies, stress management, and prolonged periods of rest.

Prolonged fatigue in chronic illness generally comes from the medical condition itself but other factors that come along with  the illness can also influence a person’s physical, emotional, and social lifestyle in a way the creates additional fatigue as well. For example, sleep patterns can be affected by conditions like dysautonomia or autoimmune disease. While there are some strategies available for managing the fatigue that result from the various conditions of having a chronic illness or pain, once again it really just depends on the type of condition that is causing it. Delegating duties to friends or family members, practicing stress-reducing technique or and good sleep behaviors, and taking a lot of breaks throughout the day can help to a degree. In most cases, though, chronic feelings of fatigue cannot be cured or treated unless  the underlying condition is cured or goes into remission.

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8. You’re usually awake to see the sunrise.

Olympians often start training in the early hours of the morning, long before the rest of the world is even awake.

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Those with a chronic illness are often awake this early in the morning as well – mostly because they haven’t gone to bed yet due to high levels of pain or because they spent most of the evening lying on the bathroom floor.

7. You’ve become really good at hiding how you  really feel.

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In order to be seen as a “good sport”, athletes sometimes have to cover their disappointment in their performance by shaking the hands of their opponent.

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Those with chronic conditions tend to hide their illness by responding that they’re “fine” while they keep a smile on their face, even though they may feel like they’re dying on the inside.

6. It’s just like having a full-time job but without the weekly paycheck.

Potential Olympians train both day and night to achieve their dreams of competing in the Olympics. When I was in training, I’d have practice in the morning before school, strength and/or weight training immediately after school, and then practice again in the evening before I went home to do homework and rush off to bed. Also, I either went to practice or to a competition on both days of the weekend as well.

As a chronic illness patient, I spend most of my time calling doctors offices, faxing recordings, fighting insurance companies, researching treatment options, and recovering from various surgeries or treatments that are often difficult in and themselves. I also spend a lot of time going from one appointment to another, shuffling from one specialist to another, going through this medical test or that treatment plan, one hospital visit after another hospital – it’s exhausting.

5. You make plans way ahead of time.

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When you’re training for the Olympics, everything is planned months ahead of time – sometimes even years in advance. This includes everything from what competitions you’ll compete in and the travel plans to go to such events to the training schedule you follow throughout the year.

Making plans when you have a chronic illness also requires a lot of preparation. As a rule, I try not to commit to anything unless I absolutely have to. On those rare occasions that I do make plans to hang out with  friends or family, every detail is planned out way ahead of time and every potential or possibility needs to be accounted for. However, considering that most of my symptoms can change substantially in the blink of an eye, most efforts to plan anything are basically futile. More often than not, I have to cancel these plans at the last-minute anyways – leaving me to feel guilty or worthless because of my illness.

4. Proper nutrition and hydration are imperative to your ability to function.

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One of the most important elements of training for the Olympics is good nutrition. If you want to reach your peak performance, it’s import to follow a well-balanced diet. It’s  also important to stay hydrated both before and after practice so that you don’t become ill or injured simply by losing important nutrient and electrolytes from pushing your body passed its  physical limitations. According to an article in Men’s Fitness Magazine (2014), “for Olympic-level performance and off-the-chart energy, you must eat properly including eating a breakfast of complex carbohydrates and lean protein, then eat again every 3-4 hours and within 90 minutes of working out. Consume half your bodyweight in fluid ounces of pure water and if exercising intensely or for long duration, consume a sports-drink to replenish electrolytes” (para. 2).

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Similarly, some of my diagnosed conditions require extreme effort and dedication to dietary guidelines in order to thrive. For instance, my vascular surgeon identified that has malnutrition after years of not really eating due to a combination of pain and early satiety caused by a rare condition called Superior Mesenteric Artery Syndrome (or SMA Syndrome). In order to survive the life-saving surgery that I need in the upcoming months, I was sent to a dietician to bring up my nutritional blood screens so that I could have the surgery to fix the compression of my SMA, as well as the other three rare vascular compression syndromes I have as well, including Nutcracker Syndrome, May-Thurner Syndrome, and Pelvic Congestion Syndrome. However, because the third portion of my duodenum is being compressed by the SMA, food becomes obstructed as it tries to move into my small intestines.Therefore, the dietician had to be somewhat creative in prescribing a diet of foods that could move past the compression. Currently, my daily dietary regimen consists of:

  • Multiple “shots” of either a protein shake or Carnation Breakfast Essentials (I do “shots” because I can’t drink 8 to 16 oz a day in one or two sittings without getting sick).
  • 2 small jars of organic baby food – levels 1 and 2 only.
  • 1 pouch of pureed baby food
  • 2 tablespoons of peanut butter.
  • 2 high-calorie coffee drinks from Starbucks (to maintain/gain weight).
  • 1 yogurt packet.
  • As many pretzels, crackers, or chips I can handle.
  • Popsicle or Italian ice – only if I can manage it as well.

For another condition, Postural Orthostatic Tachycardia Syndrome (or POTS Syndrome), I require a high intake of  both water and electrolyte drinks (e.g., Pedialyte) to help increase blood volume and prevent dehydration, along with a high sodium (or salt) diet to keep my blood pressure  high enough so that I don’t faint multiple times in a single day .

All day long, all it feels like all I do is eat and count calories. One bite here, another sip there – it’s honestly exhausting! Especially when you spent years actively avoiding food since it was the source of so much pain.

3. You prepare yourself to be strong mentally.

In any form of competition, you have to be strong not only physically but mentally as well. According to an article by Sports Psychology Today (2011),”mental preparation helps athletes achieve a focused, confident and trusting mindset to help them compete at their highest level” (para. 2). While some athletes use meditation, others prefer to listen to music for motivation. I always preferred visualization when I was able to compete. As Handel (2012) explains, “in preparation for a game, athletes will run through different situations in their imagination as a kind of mental rehearsal. This way, when they are confronted with the situation in real-life, their mind is already primed to respond to the situation in an effective way…Contrary to common misconceptions, visualization is most effective when athletes focus on the process rather than the outcomes” (para. 11 and 13)

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Essentially, I use this very same strategy to manage life as a professional patient as well. After years of doctors telling me that my symptoms were caused by anxiety or depression, I mentally prepare for all appointment by preparing notes and deciding what I want to say ahead of time. Then I formulate counter-arguments based on current medical research to make sure that my concerns are taking seriously. Sometimes I need to prepare myself mentally before I gain enough courage to go ahead  with a certain medical test or an experimental treatment plan simply because it makes me nervous for whatever reason. There are some days that my symptoms can be so bad that mental preparation becomes necessary just to make it out of my bed.

2. You can handle high levels of pain like a champion.

For the most part, nearly every competitive sport out there involves feeling pain in some, way, shape, or form. For instance, pain and injury could result from overworking yourself during practice or you could suffer a really bad head injury during competition. Although I never personally got severely hurt in competitive swimming, aside from the ocassional ear infections and a pulled muscle or two, other sports I did over the years did result in extreme forms of pain and injury. In cheerleading, for example, I suffered from 6 concussions, a broken nose, a fractured jaw, and two broken ankles – all in the span of a single season. Even with broken bones, though, I still performed  because I was the captain and I didn’t want to let my squad down.As the old adage goes, no pain – no gain, right?

It is the same with chronic illness. Often we feel pressure to do things we know we shouldn’t do but we do anyways because we either feel guilty or think that it’s an expectation. Additionally, since we experience high levels of pain almost each and every day, we have learned to handle our pain much better than the average person. When I started receiving Botox injections for migraines, for instance, my neurologist commented about how I was her favorite patient because I didn’t even flinch once as she injected needles into various places across my face, forehead, and neck. I’ve also had nurses surprised that I would barely move when they would blow a vein during a catheter placements or the fact that I didn’t cry when I had a biopsy taken from my scalp without any form of sedation (not even a local), which was later cauterized with colloidal silver instead of the normal placement of sutures. Really, it’s not that you don’t feel the pain anymore – it’s just that you handle pain better now because you’ve dealt with it for so long.

1. There’s strong camaraderie between you and your team members/fellow spoonies.

When the entirety of your life is spent training and competing, often the only people you get to see regularly is your fellow team members. Basically, they become your new family since you spend every waking moment together and they understand what you’re going through.

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When you’re sick, it can be hard to relate to people who are healthy. We feel judged by others because of our illnesses and most people can’t understand what it’s like to be chronically ill. This includes the majority of  our closest friends, family members, and doctors as well. The only people who get it are other spoonies or warriors that have gone through what you’ve gone through, and therefore  understand where you’re coming from.The chronic illness community offers a lot of support to members because we all know what it’s like to be alone or afraid. We’re so tight-knit that we have developed our own language, laugh at our jokes, and establish rules that most outsiders are unlikely to be conscious of unless they’re given an explanation. Even then, it’s hard to understand because they have experienced as much as we have. In a way, it makes up for all that’s been lost to chronic illness. Like a secret society, but one that nobody chose to join by their own accord – it’s simply involuntary recruitment into this life.



References:

Edger, M. (2011). Five tips for mental preparation. Sports Psychology Today. Retrieved from http://www.sportpsychologytoday.com/youth-sports-psychology/five-components-of-mental-preparation/

Men’s Fitness Magazine (2014). Fitness Secrets of Olympic Athletes. Retrieved from http://www.mensfitness.com/training/pro-tips/fitness-secrets-of-olympic-athletes

Handel, S. (2012). The Emotion Machine. Retrieved from http://www.theemotionmachine.com/4-mental-exercises-olympic-athletes-use-to-gain-that-extra-edge

Kreher, J.B. & Schwartz, J.B. (2012). Overtraining Syndrome: A practical guide. Sports Health, 4(2), 128-138. doi:  10.1177/1941738111434406

Behind This Soft Exterior Lies A Warrior

Usually, going to the doctor involves a great deal of planning; filling out paperwork and remembering medical records, medical testing, and emergency treatments. And of course, a great deal of  stress. However, I found it relatively comforting to have to go urgent care for a relatively normal problem. Something for once that is not associated with my chronic illness. It was a completely different experience, a normal one.

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So last Friday, I was having a pretty good day health-wise,  so I decided to do some of the deep house cleaning that I fell behind on lately. To be honest, in general, I don’t mind cleaning as I LOVE having a clean house. But it’s hard to maintain when you’re chronically sick.

First up, the master bathroom. Although we do a general cleaning often, deep scrubbing on the tub, the baseboards, and behind the toilet aren’t necessarily on the top of my priority list. Needless to say, the lack of a good scrubbing in these areas made it quite challenging. Small spaces, strong chemicals, reaching and scrubbing… my body was hating me. After scrubbing away for about an hour, my last task was the clean the tiles behind and under the toilet base (gross). I reach down and suddenly I feel intense pain in my hand.

I quickly pull my hand up and see blood. What the…? I peek underneath the toilet to see what I got cut on. Sure enough, the screw that holds the toilet to the floor is uncovered and sticking straight out from the floor, covered in rust, and disgusting.

I think to myself… oh my god. When did I get my last tetanus shot? I can’t remember. I was in cheerleading, I think. That was… over 10 years ago. Crap! Literally. It’s not a horrible cut, really. But it’s bleeding pretty good. Meaning I broke the skin barrier. And a rusty nail cut me… from a toilet. Yep, need to get a tetanus shot like now… but it’s 7pm on a Friday night. What do I do? Oh wait, the urgent care clinic is open until 8.

So off to the urgent care clinic I went.

Usually, when I go to the urgent care clinic I am barely breathing or so sick I can hardly walk. As I have probably mentioned in earlier posts, I refuse to go to the emergency room unless I know I am going to immediately die. They have ignored life-threatening problems too many times and the urgent care clinic I go to has saved my life more times than not. They know who I am as soon  I come through the door and know to take me directly into triage.

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This visit was different because I wasn’t dying. I checked in and told them what happened. The receptionist knows me well, as she used to work at my primary care’s office and now the urgent care clinic. She asked me what happened, I tell her, “After everything I go through with my chronic illness, I refuse to go out by way of a dirty, rusty toilet screw”. She laughs. It’s not busy, so I get put right into a room. A patient room, not triage. There’s no breathing machines, oxygen, or emergency equipment. But there is a TV mounted on the wall. My husband loves this place because of the time we came in during football on a Sunday and he was still able to catch his game while I received breathing treatments.

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The nurse comes in, he says hello to me like an old friend. “We haven’t seen you in a while. How ARE you?” It’s almost comical to be a regular, not at the local bar like regular people, but at places like medical clinics and my pharmacy. I update him on the latest testing and findings. He’s impressed with the amount of progress that has gone on. He’ll let the doctor know, my favorite is on duty today. Oh yeah, he almost forgot… Why am I here? I tell him the story of why I need a tetanus shot. He laughs and says the doctor will be right in.

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A few minutes later the doc comes into the room and sits down. “How ARE you? You look good today. I see they found some diagnoses. How wonderful! How do you FEEL? I know having a chronic illness can be both mentally and physically exhausting…” I’m starting to feel like I am at a high school reunion or something. It’s amazing that they care about me and want to know what has been going on with getting a diagnosis, but it’s also a little sad, really. They know so much about me, my life, and my battle with chronic illness. Meanwhile, some of my own family doesn’t care to know as much as the staff here at this urgent care clinic.

After catching up for a while, we finally discuss getting a tetanus shot. She agrees that it’s a good idea. I’m concerned about the side-effects, as I have not received any vaccinations since my immune system has weakened throughout the last few years or so. She advised I need to be concerned with the ‘live-virus’ vaccines, which the tetanus–diphtheria vaccine is a toxoid or inactivated toxin, so she thought there was little to no risk in experiencing complications or reactions. It’s the vaccine of choice in  adults, whether as a booster shot every 10 years, or after an exposure to tetanus under some circumstances, such as cutting yourself with a rusty toilet screw. She says she’ll get the nurse and I’ll be good to go.

He comes in with the needle, asking if I’m ready… Funny. Psh. I get needles bigger than that multiple times a week. He cleans my skin and then sticks the needle directly into my muscle. “Doing ok?” Of course, barely feel it, I say. “Not yet”, he replies. As he finishes up, he says I’ll need to stay 15 minutes to make sure I don’t faint or have a reaction. I’m pretty sure I am good, but I oblige. He covers the injection site with a band-aid, which he’s excited about because it’s a minion bandage and they just got them in, but unfortunately haven’t had the chance to use them on any kids as of yet – only adults. I don’t have the heart to tell him I’ve actually never seen the movies, so I smile. They’re too nice here. Plus, sometimes it’s just the little things, like special band-aids, that bring a little happiness into the world. Who am I to kill the excitement?

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My fancy Minions band-aid

After my time was up and no reactions had occurred, I was allowed to leave and  I said goodbye to all “my friends”. I get into the car to drive home and then it starts to hit me. I look down at my arm, the muscle is twitching. Oh… now that doesn’t feel too good, I think to myself. By the time I made the 10-minute ride home, my muscle really began to ache. I couldn’t remember that kind of nagging pain from when I received the vaccine years ago but figured it would pass soon. I went home, where a couple of my friend were with my husband waiting to have dinner (the other reason I decided to clean in the first place). By the time they had left that, I could barely lift up my cup or open the door with that arm. The muscle hurt too bad and was my arm was very weak. I started to get nervous, but knew this could be a “normal” reaction. I changed into my PJ’s, specifically my “grumpy pants”, which are always appropriate for symptomatic days or hospital visits that aren’t the most pleasant.

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My most comfy sweatpants – “grumpy” pants.

It took about three full days for the pain in my arm to go down. I also started to have a little bit of a fever, on top of a flare up of my usual symptoms. It was awful. I spent those days mostly on the couch, as I was pretty much useless. Although, I was lucky enough to have some loving company to take care of me the next few days while my body fought against me.

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Cuddling with the foster Doberman.

I’ve read that vaccines and boosters can amplify or trigger an autoimmune response, but research is so varied and I figured it was worth the risk, considering exactly what had cut me. Still, it is something I want to discuss with my doctors not in an urgent matter in case I do need boosters on other things (and not necessarily in an emergency situation). After I healed, I didn’t think about the vaccine again. That was… until yesterday, which was over a week later.

I woke up to sore muscles again, only this time it seemed like it was everywhere. It hasn’t gone away yet either. The worst part, though, is that in addition to my muscles being  in pain it feels like there is a raging, burning fire underneath my skin. The skin is not red or anything, but it is hot to the touch (even when I’m cold and have goosebumps). This is definitely a new symptom for me. I don’t honestly know if it is related or not, but I haven’t had any exposures to anything new. Meanwhile, I can’t decide if I should call the doctor about this (or which doctor to call about it either), so I’ve just been waiting it out. I have more medical testing this week, so maybe I’ll ask while I’m in the hospital.

Essentially, the moral of the story is don’t wait to talk to your doctors about vaccinations until it’s an emergency and/or late on a Friday afternoon. I still don’t regret getting it done, even though I had some sort of flare-up as a result. I figure it’s better than catching tetanus  or having my obituary say that I died as a result of cleaning a toilet.

 So much for being normal

Which got me to thinking…. If I wasn’t dealing with a chronic illness, I would never have made some amazing connections and understanding of the medical community. While it’s not always good (as you can see from many of my posts), it’s not all bad either. It’s moments like the one experienced at the urgent care clinic that I remember that there people in healthcare that do care about their patients and want to see them get better or get answers. They are part of the reason to keep trying, to keep educating, and  to keep searching for answers. And maybe I’m not a typical patient since my conditions are truly rare, but that doesn’t mean I will always be shunned or discounted by the medical community. Or that no doctor will be able to treat me, despite the complexity of my conditions.

And perhaps maybe I also come across as eccentric to my peers and others around me because I have a chronic illness. Not only that, but I do talk about it a lot, but only because feel a strong need to spread awareness to it for myself and others. Additionally, maybe some people won’t be accepting of me, or understand the course of this journey, or why I am the way I am, or do the things I do. And maybe, just maybe, my life won’t turn out the way that I expected it to. So what?

Maybe this is my normal and I’m okay with that. I’ll take this interesting, unique, complicated, and challenging life that has been selected for me. For without out it, who would I be?

… Besides, who want’s to be normal anyway?

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I want to be extraordinary.

I want to be a warrior.

Welcome to the new age, to the new age…

The anticipation had been killing me, but I finally received the call that I had been eagerly waiting for from the vascular surgeon. I was in my therapist’s office when the call came in, but luckily she was kind enough to let me take it since she knew it was something I had long been waiting for. I think she was curious herself. Needless to say, it was probably a good thing I was in her office when the call came in, as I was not a happy camper.


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He started by saying he looked at my CT Angiography results and he had spent some time doing research, as well as talking to fellow vascular surgeons. 

Good.  I figured he had some research to do, considering the result. 

He goes on to say my renal vein definitely shows a large amount of compression.

Okay, go on.

He asks how I’ve felt lately.

“Terrible.”

“Remind me of your symptoms again?”

*sigh*

“Well, I have had horrendous stomach pain every day.

I’m nauseous constantly.  

I can’t eat anything without being sick. I don’t digest my food.

I have diarrhea and/or constipation that is limiting.

I am tired all the time. And not just tired, EXHAUSTED.

Dizzy, heart palpitations, spinning, and chest pain.

My limbs go numb. I have arthritis. My legs are stiff and painful.

I have livedo reticularis. 

I have painful rashes. They are getting worse and change day-to-day.

My hands are now so blistered I can barely hold on to anything…”

He says, “well none of those explain Nutcracker Syndrome…”

“Right. I haven’t had hematuria in years. Just the back pain and left, flank pain. Abnormal, unexplained bleeding. But all my abdominal pain is on my left side…

“So yeah, nothing relating to the Nutcracker Syndrome. Like I said before, I don’t believe in it.”

“What about the Superior Mesenteric Artery Syndrome? Or the May-Thurner? Both were noted in the results.

“I saw it, but I don’t believe they are the cause of your symptoms” he says.

“Well, SMAS can cause severe abdominal pain, nausea, anorexia, vomiting…”

” No vascular compressions typically causes any symptoms at all. None of us (vascular surgeons) believe that these ‘syndromes’ exist.”

“Oh…”

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“Besides, on the small chance that these conditions even exist, they are so rare. It’s not possible for you to have all three. “

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So the report it wrong? Because it says I have all three.

I felt my face getting really red. I didn’t know whether to cry or scream.

“I think whatever you have is systemic.”

“But it’s not showing in my blood work. If it was systemic, you’d think my blood work would show it…”

(I think this to myself, but I can’t say it out loud. I’m too frustrated and  taken off guard to even say almost anything at all)

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“Like I told you during the consult, I want to take a very ‘conservative approach’ to this. I don’t suspect the Nutcracker syndrome is causing your illness. I suggest you continue looking for the cause of your illness elsewhere. After you have exhausted everything else possible, then come back and I’ll re-examine you again. If at that time, you don’t have a diagnosis despite exhausting all other options, then we can go ahead and try to balloon the vein and see if there is any relief.”

“Okay. Thanks for calling.” I hang up.

I’m positive that there was no hiding the disappointment and  sadness in my voice during that call.

I don’t care though. Maybe it’s something he should hear. Not that he cares.

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I am beside myself at this point. I can barely breathe, my chest is tight, and I have no idea what to do.

So let me get this straight…

All these world-renowned doctor’s, who have researched these disorders extensively, don’t know what they are talking about?

The Mayo Clinic, The Cleveland Clinic, and The NIH know less than you, is that correct?

All the patients in my support groups are just lying about their symptoms?

Everyone in the Nutcracker Syndrome Group?

The Superior Mesenteric Artery Syndrome Group? The Wilkie’s Group? SMAS Support?

The May-Thurner Syndrome Group as well?

Not to mention these patient’s doctors (world-wide) who not only diagnosed them with these “imaginary” syndromes but also are treating them for it too. Are they lying?

The invasive surgeries that these patients have undergone, their feeding tubes that have saved their lives, their medications… Is it all for nothing?

All of those people with these ‘non-existent’ disorders, particularly SMAS, that have lost their lives to these conditions… must have never existed either, right? 

What a crock of sh*t!

{Excuse my language.}

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I debate on sending him all the research and case studies I have found.

There’s so many, but it probably wouldn’t matter anyways.

GARD Superior Mesenteric Artery Syndrome

Superior Mesenteric Artery (Wilkie’s) Syndrome as a Result of Cardiac Cachexia

Wilkie’s Syndrome

Wilkie’s syndrome causing persistent vomiting

Patient with Both Wilkie syndrome and nutcracker syndrome

Nutcracker Phenomenon and Nutcracker Syndrome

Case Report: Nutcracker syndrome: A rare anatomic variant

Current trends in the diagnosis and management of Renal Nutcracker Syndrome: A review

May-Thurner Syndrome

The list goes on and on…

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I feel panic inside. Now, what do I do? Where do I go from here?

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I tell my therapist what was said. Of course she thinks this is crazy. At least it’s not just me. She has looked into every condition and every medication the doctors have mentioned or I’ve found in my research. This is why I like her so much and why I continue to keep going. She tries to understand me. She respects my opinions. At least there’s someone.

I see her look down at my hands and legs. My hands are red, swollen, peeling, and visibly painful. My legs clearly look bruised in spots, with purplish-molted discoloration.  

She asks me, “what’s next?”

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I have composed myself by this point. No point in breaking down, anyway. There’s nothing I can do to change this doctor’s mind. Plus,  I’m used to being disappointed by doctors. He’s not the first one to not believe me, or give up on me. Sadly, he probably won’t be last either. 

“I find another vascular surgeon. Get a second opinion. I start over… again.”

“How do you feel about that?”

“I’m just tired of it, really. I feel nothing anymore. You get so close, then hit a wall. Over and over again.”

“That’s frustrating. It shouldn’t be that way”

“No, it shouldn’t. It’s unfair and it sucks, but that’s the reality of it. This is how it is to be chronically sick. Normal people don’t see this side of healthcare in their yearly check-ups or their infrequent appointments for a cold or flu. But we (those with chronic illness) deal with it every day.  Every day is a fight to get the proper care. These doctor’s don’t care. Health care in the United States was not meant for us (chronically ill). Yet, we keep fighting, who know’s how. Probably because there is no other choice. What else can you do?”

I lean further back in my chair. I’m not hiding my frustration or disappointment well. I know she understands, or at least can acknowledge,  how I feel. This alone makes me feel better. Well, at least better enough not to scream or cry, which was my initial reaction to the news. Even though I have had plenty of time to process what was said by now, I’m still in a bit of shock.

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As per usual, today was spent picking up all the pieces.

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I called multiple vascular surgeons all over the entire state and I found a few actually in town that accepted my insurance. Although I know an in-state doctor more than likely won’t have a great deal of expertise on any of my conditions, it’s the only option I have currently. I’d prefer to see one of the very few doctors (all in the highly accredited and well-known clinics across the country) that specialize in these disorders, but my insurance won’t pay out of state and it’s just not feasible for me financially. At least not at this time, maybe ever.  

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I made sure to ask them if they had surgeons who were familiar with ‘rare vascular compression disorders’. Of course, a lot of explaining of the conditions ensued and I had to be placed on hold multiple times while they asked the doctors, but I found two potential offices that may be able to at least give me a second opinion. They need another referral, however, which wouldn’t be an issue if my primary care office would actually answer their phone so that I could schedule an appointment with my doctor. But alas, both yesterday and today I got the infamous voice mailbox that literally goes nowhere. (There’s no actually recording, just a beep to leave a message. And every time I do leave a message, I NEVER get a call back) I guess I’ll try back on Monday.

Thankfully, Monday is the start of a new week.

It’s a good day to start from the beginning, once again.

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Keep Your Head Up, The Colors Are Beautiful

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Lot’s of new things on the horizon, so I figured I’d give a short update.

  • On UndiagnosedWarrior: Been updating and organizing pages, adding new information, noting some tips and tricks, and other things here and there. Take a look around and let me know what you think. I have some good ideas and really want to add more content for those looking for a diagnosis, as well as those who have already been diagnosed. And, of course, keeping you updated on my search for a diagnosis. 
  • On Life: I’m officially back out of work, but this time my short term disability has been approved. After the whole mess with getting a Lupus diagnosis, then having it taken away, then given back by a different doctor, I’m still confused as to whether or not I ACTUALLY have it.  I have a few tests pending and some recent tests that have come back with very interesting results (*Hint: It was enough to finally PROVE my disability claim). I’m waiting for the doctors to call to discuss their thoughts, so I don’t want to jump the gun on yet another diagnosis, so I’m going to wait to post, but I’ll update as soon as I can.

As for now,

I just want to leave you with the strength in knowing

 that all your struggles, all your hard work, and your persistence to keep looking 

IS WORTH IT!

I know it is hard to stay patient and that you are tired of waiting,

especially when  you have been sick for so long.

But waiting is always the hardest part. 

Keep trusting your instincts. 

Trust the journey.

You know your body better than anyone.

The answers lie WITHIN YOU.

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“Keep your head up
The colors are beautiful
When they say give up
Turn up your radio
All the sentimental memories you own
When they say grow up
It’s just like a funeral
Keep your head up
The colors are beautiful
Keep your head up
It’s all right in front of you
When they say wake up
You’re breaking ridicule
When all the sentimental memories you own
Keep you trapped inside your room there all alone

And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

On your own

Keep your head up
The colors are beautiful
And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

Watch this fade away
Everything fades away
Keep your head up
The colors are beautiful”

(“Head Up” by Sugarcult)