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

It’s Alright Not to Feel Okay…

For the most part, I try to stay positive about what I post on this blog. But, as most of you already know, life with a chronic illness is hard and it is definitely not always sunshine and rainbows as one might think – although I do believe that both would make things slightly easier to handle, don’t ya think? Nevertheless, there are just some things that come along with living “the sick life” that truly shake you to the core sometimes. For me, it’s hearing about other patients that have the same (or similar) diagnosis and have passed away as a result. I posted the following on my personal Facebook page a little while ago but felt it was important to share on this page as well. Sometimes you just have to say what’s on your mind because it’s good for the soul. In a way, venting allows me to grieve – not only on behalf of those that have passed but also for myself.


Sometimes I get so tired of hearing about my fellow warriors dying because their pain was not taken seriously or they couldn’t find the help that they needed. It’s becoming way too common lately and just thinking about how others have been treated because of their illness – hell, how I’ve been treated at times – makes me both physically and emotionally sick.

Trust me when I say that majority of people can’t even begin to comprehend the level of pain that those of us with vascular compressions live with each and every day. Or how much has been lost as a result of illness? Although I don’t necessarily agree, I can absolutely understand why many have chosen to take their own life.

Honestly, I’ve been lucky. It took a lot to just simply survive. Being misdiagnosed could have killed me. So could have all the wrong medications, treatments, and surgeries that have been offered to me along the way. I had to educate myself and challenge my care at every single step along the way. I’ve had to stand up to my doctors. I’ve had to fire some doctors. I’ve had to prove myself over and over again – prove that I was, in fact, sick; that I wasn’t imagining the pain – just so that my concerns would be heard and taken seriously. So that someone would help. Basically, I’ve had to fight with every bit of strength left inside of me just to get to where I’m at today – and no, I’m not better yet.

Obviously, this hasn’t been easy and I’m still in pain almost every day. Yet, somehow, I still hear that I’m not actually sick or that I’m not sick “enough”, even though test after test show’s that something’s seriously wrong and has been for a while. Eventually, something has got to give in the way we do medicine, especially when it comes to managing chronic or rare conditions. The gender bias in treating young women needs to stop as well.

No, it’s not anxiety! It’s not depression! And it’s definitely not in my goddamn head! These conditions are real and you would know that if you took a minute to listen.

Mostly, though, I’m angry – angry that this is somehow okay; that this is acceptable. I’m also incredibly sad as well. These tragedies could have been avoided. Most of these deaths are senseless. Something could have been done. The worst part, however, is that nobody cares. I repeat: nobody gives a damn.

Do you think the doctors cared when they heard that their patient had died? I doubt it.

Do you think the friends or family members who left when the person became ill and couldn’t get out anymore really cared? Not enough, obviously.

What about all the other people in their life who judged them, told them to try harder – to do more – to be more- to stop being lazy? Do you think they cared at all, really?

I cared, though… I still care.

Part of this is selfish, though, because I think about how easily that could have been me – and could still be me someday. I hear about the others just like me dying so frequently lately that the idea of death no longer scares me – it’s just par for the course at this point. How sad is that? I tell you, having a chronic illness makes you jaded.

I’m really trying not to be negative, but I’m so incredibly frustrated and disgusted that I just needed to vent. I just hope someone out there is listening.

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Whenever you need or want somebody to listen, I’m here. Just send me a message either here or on the Undiagnosed Warrior Facebook Page – I’d be more than happy to hear your story anytime.

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National Suicide Prevention Lifeline Magnet, SVP05-0126

National Suicide Prevention Lifeline Magnet

Please keep fighting fellow warriors!

Review of Bill Meyer’s – Healing and the Mind: Healing From Within

If you haven’t had a chance to watch any of Bill Meyer’s films about chronic illness, I definitely recommend doing so. Although many of them are older, they are helpful in gaining insight into chronic illness and ways to improve your quality of life following diagnosis. In my health psychology class last semester, I was fortunate enough to be introduced to his film Healing and the Mind: Healing from Within.


<p><a href=”https://vimeo.com/39767361″>Healing and the Mind – Healing from Within</a> from <a href=”https://vimeo.com/moyersandcompany”>BillMoyers.com</a&gt; on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

In general, society expects chronic or terminal illness patients to remain strong in spite of their condition. The media alone has set an excessively high standard for those who are sick by portraying illness a challenge that can easily be overcome. For example, there are numerous stories in the news about a cancer patient that accomplished something extraordinary and everyone deems them a hero for overcoming the obstacles of their disease. However, you don’t typically see stories of the patients who spend weeks or months in the hospital, undergoing painful medical procedures or chemotherapy.  You also don’t hear of the millions of patients still waiting for a diagnosis for this condition – which in my case, took over 20 years. As I mentioned earlier, there’s a shocking reality that follows chronic illness. As the Moyers (1999) mentions, “despite all the powerful weapons of modern medicine, many patients can’t be helped. Frustrated doctors are beginning to turn to alternatives” (Opening Scene).

According to the Centers for Disease Control and Prevention (CDC), nearly half of all adult (or 177 million people) are diagnosed with at least one chronic condition, with one out of every four of these patients diagnosed with two or more chronic illnesses or diseases, and account for nearly 48 percent of deaths in the United States. Unfortunately, many of these deaths are the result of suicide.  Recent reports on chronic illness have found that depression is approximately 20% higher in those who are chronically ill, while “physical illness and uncontrollable physical pain are major factors in up to 70% of suicides” (Copen, 2016). Just as horrifying is the fact that chronic illness could happen to anyone at any time, despite taking cautions by practicing health behaviors. Essentially, chronic illness is a community – a community that doesn’t discriminate against its population and that any person can be forced into at any given time, often without prior consent. A popular saying within the chronic illness community is that “you don’t know until you know,” and that’s the truth. Nothing prepares you for the challenges of living with a chronic illness, both physically and emotionally.

It drives away social connections, with both family and friends alike, and you lose the connectedness you once had in the world. Chronic illness literally touches every part of your life and, ultimately, it changes who you are – who you think you should be. A serious diagnosis instantly can dissolve one’s hopes or dreams and any plans that they had for the future. It becomes impossible to simply plan for tomorrow because there is often little to no predictability when it comes to illness. Additionally, the experience of chronic illness is yours alone – leaving you to feel frightened and isolated, angry or depressed, and guilty for not doing more or being more. A patient in the film Healing and the Mind described it best by saying, “I just see things getting stripped away from all of us a lot of times. One thing after the other stripped away. Stripped away, stripped away. And then who or what is left?” (Moyers, 1999, Introduction to Dr. Spiegel’s New Experiment Scene). As a chronic illness patient myself, I can firmly attest to this reality. Somedays it’s hard not give up when you’re sick all the time because you’re constantly battling between both your body and your mind. It’s hard not to get discouraged, especially when your told there’s likely little hope for getting better – no pill to take the pain away, no doctor to stitch you back together. When clinical intervention is no longer an option, patients look for other ways to manage their condition.

Learning to adjust one’s life around chronic illness is often a major challenge following diagnosis and as Moyers (1999) mentions in his film, chronic illness patients are suffering; they’re looking for ways to manage the stress associated with their illness by regaining control once again. For instance, the first half of Healing and the Mind begins by reviewing a program initiated by Dr. Kabat-Zinns, which treats individuals diagnosed with a serious physical illness or disease through the use of mindfulness and meditation exercise. In an interview regarding the program, a colleague points out that Dr. Kabat-Zinn is well respected by most doctors in the hospital for his work in managing the psychological aspects of illness. Not just because his methods have proven to work, but mainly because Dr. Kabat-Zinn takes on the toughest patients that clinical medicine couldn’t help and teaches them to live with the pain. The most profound moment for me, however, was the scene where the doctor was teaching yoga and was explaining how to let go of feelings of stress or pain:

And you feel the pain. Then you just see… see if I can ride the waves of this sensation. And you watch the sensations come and go, and very often they will change. Noticing that you can uncouple the sensation from your thoughts about them. Like, this is killing me, it’s going to last forever, there’s nothing I’ll be able to do about it. And you learn to free yourself from those thoughts and realize those are just thoughts. And then it turns out there is an inner stillness and peace right within some of the most difficult life situations. If you can learn to be comfortable within the pain or within the anxiety, it’s going to change it completely. You’re not trying to make it go away…

What we’re doing is saying, actually move into the stress and begin to look at, look at the pain, look at what the mind’s reactions are. And you’re asking, ‘is this killing me right now, in this moment, is this killing me?’ The answer is very often, ‘No, it’s not, but my GOD if I have to live with this for 30 years…’ And then you say, ‘But wait a minute, the idea is just to be in the present moment, let’s just flow with this.’ And over a period of time, people learn to actually relate differently to the pain. (Moyers, 1999, Yoga Scene).

There’s no denying that the way we think or feel can greatly influence the physiological aspects of health. However, the amount of social support a person receives (or doesn’t receive) is also a determining factor in how one copes with chronic illness, especially in terms of quality of life. According to Gurung (2014), “empirical studies and reviews show that people with more social support have a more positive adjustment to chronic illness… Having a socially supportive environment often makes the patient more actively cope with the illness and less likely to disengage and get worse” (p. 316). While having a strong personal network of family or friends is important, and sometimes necessary for basic survival, many patients will turn to group support in order to better manage their condition.

Patients can benefit from support groups for a number of reasons. For starters, supports groups are designed to bring those with similar issues, such as chronic illness, together as a way to bond and share experiences. It’s a safe place where individuals don’t have to hide how they honestly feel. For example, [in talking about on his participant in the study on support groups] Spiegel states that “it’s interesting in reflecting back on how she [the patient] presented at the first meeting with this extremely extensive and well-developed support network that despite having all those people [the patient’s support group], there were things that she felt she couldn’t share with them, but started right off sharing in the group” (Moyers, 1999, Support Group Meeting Scene). Sometimes it’s easier to discuss illness with those who understand what you’re going through. Other times, it’s just hard to tell the people that you love that you’re scared, depressed, or in pain. Individuals affected by chronic illness typically feel guilty about their condition, or that they even became sick in the first place, and they don’t want to be a burden to their family or friends. As one patient’s studied in the film stated, “I think we put on a big front for the people around us” (Moyers, 1999). Likewise, these patients can also feel that it is necessary to hide the signs of their illness to avoid the discrimination that’s become common in modern society, which views chronic illness as a form of weakness. Ultimately, it’s easier to find comfort in those you know won’t judge you for your condition.

Aside from the above, there are other benefits from finding support from a group, many of which were shown throughout the film. For example, one of the main types of social support comes from gaining informational support. Belonging to a support group provides a place to share or gain information about a particular condition or disease, such as sharing personal experiences, discussing treatment options, and exchanging tips or trick that may help to alleviate symptoms. Also, it helps to see what others are going through or to know that you aren’t the only one who has gone through this experience. Likewise, meeting others like you can often put things into perspective. For instance, if others appear to be worse off than you, it makes you be thankful for your situation. Alternately, if they have achieved recovery or appear to be doing better than you, it can give you hope that life won’t always be this way. It can also help in bringing understanding for setting expectations for the future in terms of living with chronic illness. More importantly, though, support groups create a group dynamic based on a common history. Being part of a group provides inclusion to something bigger and more profound; something outside of the self. It allows for a sense of belonging to the human race once again (Moyers, 1999).

One of the scariest parts of being sick is not knowing what is going to happen in the future. It’s also hard to explain how someone could feel alone with their illness, despite having a number of friends and family in their life. More times than not, individuals with a chronic illness feel segregated because of their illness or feel pressure to do more because of the pressure placed on them to live a normal life in spite of their conditions. Although family and friends are an essential element of one’s ability to cope with chronic illness, as you mentioned they can also create further problems or distress handing disease. Similarly, individuals who do not have a strong support network can also struggle to cope on their own, which makes access to support groups crucial to physiological and psychological well-being following a diagnosis of chronic or terminal illness.

There is a grieving process that coincides with illness, although this is a crucial part of coping with a chronic or terminal disease.  According to Absenger (2015), grief in terms of illness is defined as “the primary emotional/affective process of reacting to the loss of a loved one or loss of quality of life due to chronic illness. Grief reactions can also be viewed as abnormal, traumatic, pathologic, or complicated” (para. 9). The grieving process for chronic illness is similar as it is for those who are bereaving over a loved one, consisting of 5 Stages of Grief in Illness:

  1. Shock and Denial: When an individual first receives a diagnosis, they often go into a state of shock or numbness, unable to process what the doctor has said. As Absenger (2015) mentions, patients experience a “subjective sense of numbness, detachment, or absence of emotional responsiveness” (para. 15). Likewise, you try to avoid coping with the reality of a diagnosis by simply ignoring the problem.
    • This isn’t really happening to me.”
    • “The doctors must be wrong; I am not sick.”
    • “I’m fine, everything is fine.”
  2. Anger: When a person can no longer deny the inevitable, one can often feel anger or bitterness towards their illness.
    • “What did I do to deserve this?
    • Life is so unfair!”
    • “Why me?
    • “I am sick and tired of always being sick and tired!”
  3. Bargaining: They want to understand why this happened and become desperate to find a way to fix themselves. They believe if they make deals that they alter the outcome of their illness.
    • “God, if you make this go away, I promise to…”
    • “I’m willing to try anything to feel better.”
    • “I should get a second opinion. Maybe they will tell me something different.”
  4. Depression: When bargaining doesn’t work, sadness begins.
    • “My life isn’t worth living.”
    • “I don’t know who I am anymore.”
    • “How am going to afford to live?
    • “I won’t ever be able to afford these medical bills.”
    • “What’s going to happen to me?”
    • “I can’t do this anymore… I give up!”
  5. Acceptance: This is the most important stage in illness because patients are able to live with their condition. According to Absenger (2015), “learning new coping skills will help you not only to learn and accept the losses and limitations of chronic disease but also allow you to transform your experience into something livable and bearable” (para. 23).
    • “I can cope with whatever life throws at me.”
    • “I will try to live the best life that I can.”
    • “No matter what happens, I’ll be okay.”

When you’re going through the stages of grief, it almost feels silly or selfish to mourn the loss of yourself. Ultimately, though, it may be the only way to get over the heartbreak of diagnosis and prepare oneself to cope with illness or disease.

As we saw throughout the film Healing and the Mind, learning to adapt and accept the pain of illness is essential in both healing and regaining control of life. As Dr. Jon Kabat-Zinn mentions during a group discussion on mindfulness, “if you hope to really grow in strength and wisdom, and bring healing into your life, you have to come to the realization that this moment is precious. And not only precious, but it’s wonderful, even if you’re in pain at this moment. Now that takes a certain amount of courage to do” (Moyers, 1999, Group Discussion on Mindfulness Scene).

References

Absenger, W. (2015). Mindfulness and the Stages of Grief in Chronic Disease. Retrieved on February 23, 2016, from http://amacf.org/mindfulness-stages-of-grief-in-chronic-disease/

Centers for Disease Control and Prevention (2016). Chronic Diseases: The Leading Causes of Death and Disability in the United States. Retrieved on February 22, 2016, from http://www.cdc.gov/chronicdisease/overview/

Copen, L. (2016). Information and Statistics About Invisible Illnesses and Visible Diseases. Retrieved on February 22, 2016, from http://invisibleillnessweek.com/media-toolkit/statistics/

Gurung, R. A. (2014). Health Psychology: A Cultural Approach (3rd ed.). Belmont, CA: Wadsworth.

Moyers, B. (1999). Healing and the Mind – Healing from Within . Retrieved from http://vimeo.com/39767361

Cause I went to hell and back just to be where I am today

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I kept hoping and praying, haunted by dreams about my upcoming vascular surgery appointment. After the last visit with a highly recommended vascular surgeon (posted here) I just knew I couldn’t handle yet another doctor making me feel completely invalidated by saying “while it appears that you do, in fact, have these vascular compressions visible in multiple scans, the syndromes don’t exist and you can’t have that many rare conditions anyway.” 326f193abca524f9e98fbd8d7140e0c1After all of this… the nonstop tests, countless doctors appointments, misdiagnosis, and judgments against my mental health status… I just knew I wouldn’t be able to handle another major disappointment. But I also can’t keep living this way either.

Figuring there’s nothing to lose at this point, I asked my cardiologist for a referral for a second opinion at our last appointment together and he gladly obliged. To my surprise, he put it in as an urgent request. Just two days later I received the call from the vascular surgeon’s scheduler with an opening for the following week. It took me almost four months to see the last surgeon so I was pretty impressed. My records, however, didn’t make it on time for how quickly they scheduled me and the doctor was going need the actual imaging, not just the reports, to do my consult so I had to reschedule. In fact, my husband had to drive me over an hour into the city on two separate occasions to physically pick up my records because the scans were done at separate hospitals. Both kept ignoring requests from both the new hospital and myself as well, despite writing “urgent” all over them. So frustrating!

Although I was nervous about starting over at a completely different hospital because I was completely comfortable and used to my current site (I really am a creature of habit), the cardiologist planned to send me to this location for the dysautonomia clinic anyway. It’s easier when my doctors are located within one location or network because of the number of specialists I have on my medical team now and it’s next to impossible to get them all to communicate with one another unless they physically working together it seems. However, this still didn’t stop my nerves about the appointment. As far as the vascular compression syndromes are concerned, this was really my last shot to find a doctor in the state who could treat these conditions. No pressure or anything.

As we pulled up, I instantly felt like the new kid in school. The campus was huge and it took us a moment to not only find the building that my appointment was in but where to park as well. We thankfully left early and gave ourselves plenty of time.

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It was a good size walk from the parking garage to the building, so I was extremely dizziness and nauseated by the time we got into the lobby on the third floor. I checked in and went to have a seat. I was amazed at the size of the lobby, it looked like there were  at least 50 people in there waiting. I had a sinking feeling come over me, stunned at the number of people who were waiting ahead of us. ‘Oh please, let them have a ton of doctors working today because I really don’t feel that good and I don’t think I can wait that long…” I also knew we had at least another hour or so drive back home to get through as well and all I wanted to do was go home and go to sleep.

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Luckily, the wait wasn’t too bad – only about 15 minutes after my scheduled appointment time when they brought me back to the exam room. The nurse took my vitals and history before she left to bring the doctor my hand-delivered scans. I assumed it would be a while so I squirmed into the most comfortable position in my chair I could find (which was not really comfortable at all) and attempted to sleep. It didn’t last long.

About five minutes later, there was a knock and the exam room door opened. That was quick… I start to get up but I’m taken aback a bit. A young gentleman (younger than me anyways) walks into the room. This doesn’t look like my doctor… I googled him. He introduces himself as being a medical student studying under my doctor. Ohhh. Right. This is a medical school after all. He seems nice enough but still…while I can appreciate the intelligence, endurance, and drive it takes to become a medical student,  I can’t help but feel slightly disappointed. Is he going to be the only one doing my consult? I have a complicated case. I’m instantly worried once again. Maybe they think it’s in my head as well and that’s why I’m only seeing a student. I’m paranoid at this point.

He takes a very short history of my symptoms, only asking a couple questions really, and then says he’ll let the doctor know. Phew. Ok. He’s just getting some information. I will be seeing the doctor then. I feel a sense of relief. Remember, I’m at the end of the road here – I need everything to be perfect. (You can’t blame me, though, for worrying after all the mess I’ve been through just getting to this point.) A few more minutes after the student left the room was there a knock on the door once again. This time, I do see my doctor (which I recognize from the internet), but nothing could have prepared me for what followed in behind him. I felt like I was going to faint…

621-00787693tFirst it was one. Then another. And another.
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One-by-one, medical students slowly filled every corner of my exam room.

And they’re all staring at me, intently.

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 Nope, not intimidating at all…

It caught me a little off-guard, honestly. Plus, I hate feeling like the center of attention. It makes me so self-conscious. I do everything in my power to have people NOT to pay attention to me. I wondered if this was normal protocol, as I had never been to a teaching hospital before. Don’t embarrass yourself, Nikki. I send a sharp look to my husband, my eyes told him the same thing I told myself. He got the point.

I tried to stay focus on what the doctor was saying, but it was really hard not being distracted. Or a little claustrophobic. With every question I answered, I saw the students take notes. I wondered what they were writing… I wondered what they thought of me. Do they think my case is interesting? Or do they think I’m crazy and making this all up? I couldn’t read their faces.

The doctor confirmed he saw everything in the scan that he saw in the radiology report. The Nutcracker Syndrome. The Superior Mesenteric Artery Syndrome. The May-Thurner Syndrome. We even all watched the scan together, where he pointed out exactly what my body was doing, where it was compressed, and how he could tell – rewinding to those parts so I could watch it more closely. He explained everything as we watched the iodine flow down toward my left kidney, only to move itself back out of the renal vein (instead of through it) and into the lumbar spine/ plexus. He said that my body learned to adapt to the compression by creating collateral pathways to compensate for the lack of blood flow, almost like a survival mechanism. Wow. The human body truly is a magical thing.

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He also asked a ton of questions – specific questions – and wanted detailed answers, such as how it feels when this happens or what happens after that? I provided him with situations and stories. I pointed to where it happens. I told him how it hurts. I gave him everything I could think of at the time.

As I explained each and ever pain, he listened. 

With every detail, the students kept writing.

I could hear their pages turning in the background. When it was quiet and I had given every account that I could, the doctor turned to his students, “So, do we all agree with  pelvic congestion syndrome?” They all nod their heads in agreement. He asked me if I’ve heard of it, I had but hadn’t studied into too much but it honestly wasn’t a shock because it’s a very common cause of pelvic pain and many patients with either Nutcracker Syndrome or May-Thurner Syndrome have also been diagnosed with it as well. He told me to go home and google it to make sure it fit. Um, ok. No doctor has told me THAT before but sure. So I did.


The doctor says they are going to schedule venogram to confirm the diagnosis. If they can, they’ll just fix it while they are in there. They’re also going to test the pressures of the other the compressions and see if there are any further abnormalities during the procedure as well. Perfect, we’re getting somewhere.

I still had one more question, though, but I was almost afraid to ask. But I knew I needed to. I took a deep breath…

So, do I definitely have all of these syndromes?

The SMAS, NCS, MTS, and now possibly PVCS?

They actually exist and I have them?

The doctor then gave me the most profound answer I’ve heard to date.

He said:

“It doesn’t matter what you want to name them.

It’s clearly happening in your scans, you saw it.

Call it whatever you want.

 Your symptoms, as you described them,

are EXACTLY what one would EXPECT you to feel.

The tests prove it.”

Finally!

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He finishes by saying that they are going to conference on Monday morning. Other doctors and students will watch my scans again and make sure nothing else is missed. If they do find something, they’ll call and let me know what it was or if the treatment plan is going to change, but to otherwise go ahead with scheduling the venogram. They’ll also discuss how they want to handle the three other compression syndromes in their meeting as well. I thank him.

As I’m about to leave, one of the student’s asks if he could do an in-depth interview with me for Monday’s conference. He doesn’t want to miss anything or hear it second-hand. I obviously agree and we go through it all – again. He asks more questions and then even more based on my answers. He also offers advice about things that I could do to possibly help myself from now until [surgery]. By this point the hospital was closing down around us, almost everyone has gone home for the day. But he never rushed me once. He just continued asking his questions and listening, eager to know more and ensure that he gets my story right. He’ll never know how much that means to me, the patient.  

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When I got home I chatted with an online friend, who also happens to go to the same hospital for two of the same compression syndromes as well. I just had to know, was this how the hospital normally treat all their patients? She said no, not usually. Maybe only one or two. “But being rare gets you extra people”.  She had a large number of students during her surgery prep and throughout her recovery. They visited her every day.

It’s almost funny. When you’re undiagnosed, you hate the idea that you may not have a diagnosis because of some rare, unknown condition. You worry that nobody will ever find whatever it is and, therefore, you’ll never receive treatment to feel better. Half the time, nobody believes you anyway.

But  I guess when you do finally get that rare diagnosis, suddenly you become the ZEBRA at the aquarium. Now, you’re medically interesting. Now, you can breathe.

I may not have the easiest road ahead of me, potentially filled with major surgeries and/or lots of pain. But once again, I can say I feel hope. I can go to bed knowing that I honestly tried everything that I could to take my life back, without worrying if the doctors would ever find out what was wrong with me outside of autopsy. I finally have options. A plan of attack. My diagnosis is on paper -and- it’s not a misdiagnosis this time. It is real – I saw it with my own eyes – and so did my doctors. And they believe me.

Now, I can finally say that it was all worth it.

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Oh doctor, doctor, I must have gotten this sick somehow. I’m going to ask you a series of questions, and I want them answered on the spot, right now.

Patience has never been a virtue of mine, as many of my friends and family can attest to.

But I feel that I have been extremely patient with my doctors, maybe more than I should be.

I wasn’t planning to do an update until I received the final confirmation from my doctors,

but it seems like that won’t be happening anytime soon,

so I figured that no time is better than the present.

It’s been just about a month since my abnormal tests came back. I have left multiple messages for both doctors, one every week, hoping for a callback or at least an idea as to whether or not I need to come in for an appointment to discuss the test results in person.However, all I got was silence. I literally felt my blood boiling each day that went by that I didn’t receive a call. 

I’d whine about how:

“They’re delaying my care.”

“Sure, just because I’ve been sick forever, no reason to rush or anything.”

“I don’t know how doctors can get away with not calling when tests are abnormal.”

And, of course, the classic:

“I’m going to die before they ever figure out what this is.”

I was feeling sorry for myself, to say the least. I felt alone, abandoned, and lost as to what to do next. It was really starting to mess with my head. I hated being this way but I hated how these doctors were making me feel even more.

I felt like they were completely disregarding everything I have gone through

in my search for a diagnosis.

The years of life I have lost due to being sick.

The hours spent driving to appointments.

The amount of time in hospitals and doctor’s offices.

The high levels of radiation and all the discomfort in medical testing.

The countless pills prescribed, which often caused more side-effects than actual relief.

The procedures and surgeries, which also didn’t fix my disease.

The friends and family I lost, because they didn’t understand.

My career goals and aspirations that have been placed on hold.

Everything I once was and what I could be.

My whole life is on hold!

And here, right in front of you, are these abnormal tests

that provide answers to my chronic, undiagnosed illness

that I’ve fought so hard, for so long, to find

and you can’t pick up the phone to call me? 

Maybe I am being impractical,

but a month spent waiting seems way too long.

That’s a month to complete more testing or get second opinions.

Four weeks of treatment or management.

30 days of my life lost, left waiting.

FINALLY, a nurse from my GI, Rheumatologist/Immunologist, and Cardiologist’s office called, but she only caused  more confusion and frustration than before. She tells me my fecal cultures came back normal, which I already knew. She then says my cortisol levels were low (again, I’ve had my test results for weeks) and the doctor would like me to rerun it to be sure. She’s going to mail the paperwork so I can at least have my blood drawn in town, instead of driving over an hour. Great, thank you. She also tells me to stop taking my lupus medications… wait, what? The GI doctor and the Rheumatologist/Immunologist agree that I should stop taking them, because I’m not autoimmune. Um… ok. How come she originally, as did all the other doctors, think it was seronegative autoimmune disease? Specifically, Lupus?  I’m not in the mood to argue, I’ve been feeling terrible. I ask if I stop them forever, she says yes and the conversation is over.

She calls again yesterday, just to tell me to stop taking the Lupus medications… again. Yes, you told me the day before. Both doctors think it may be causing my painful and urgent diarrhea.Um, I have had on and off urgent diarrhea for… like… ever. But ok. So it’s not because it can’t possibly be autoimmune? I’m confused. She asks if the medication has helped. I said I’m over the initial side effects. I’ve had constipation for the past few days, so don’t think it’s causing diarrhea, and I haven’t had any extreme photosensitivity as in the past weeks, but still having outbreaks of rashes. I don’t know what is causing what anymore. My symptoms are too random and sporadic. She says to call next week or the week after, let them know if being off the medication makes me feel better or not, and then we will restart it if it’s not the problem. Wait… so let me get this straight? Now you’re taking me off it, to see if it’s having side effects I have had forever, only to restart it and have to adjust to it once again? Are you kidding me? Well, it may be affecting your cortisol levels, so they want to see if I stop it if it’ll change my blood test.  I am beyond confused and frustrated at this point. I went and redid my cortisol blood test this morning, so I guess we’ll just wait and see what that tells us.

Still haven’t gotten a call from the vascular surgeon. My CT Angiography was the one I was MOST worried about and  I fretted every night about him not calling me to discuss the findings. . Finally fed up, having left four messages now, I called and scheduled an appointment to discuss. I don’t know whether or not I trust him to treat at this point, given the lack of respect of promised phone calls with no answers, but he may just not know what to do or say about the finding. This is the doctor who didn’t believe in Nutcracker Syndrome at all for his own, valid reasoning, but admitted my original CT Scan showed the most convincing case of Nutcracker Syndrome that he has seen in over 30 years. He ran the CTA to “prove him wrong”. On the order form for the test, he even wrote “to exclude Nutcracker Syndrome”, instead of “evaluate for Nutcracker Syndrome”. He was really convinced I couldn’t have it, it’s too rare, and most vascular surgeons don’t think it’s a real thing.

Well, guess what? I proved him wrong. Not only that, they found two more (even rarer)  vascular compressions. The radiologist noted both May-Thurner Syndrome and Superior Mesenteric Artery Syndrome, although the Nutcracker Syndrome is the most extensive. So perhaps, maybe he is lost as to what to do or say at this point, I don’t know. But I’d rather him tell me that if that is, in fact, the case, rather than be silent about it. But I have an appointment now, so he can’t ignore me. So we’ll see how that goes.

I also had my consultation with cardiology last week. It had gone way better than expected and I really liked the doctor. He not only listened to me, he caught things other cardiologists had  missed in the past, and had my notes completed (and accurate) by the end of the day. I was fearful for this appointment, as I have not had the best luck with cardiologists in the past. They always say they hear a “murmur” or “valve issue”, order tests, and then call me crazy. This has happened on multiple occasions, both in my teens and early twenties. So you can see how I’d be nervous about going straight into an appointment saying “I think I have POTS syndrome and so does my neurologist and the immunologist (although she seems to have forgotten EVERYTHING she told me in my last appointment, so maybe she doesn’t think I do anymore, who knows)”. I show him the letter from the neurologist and my ‘poor man’s tilt table test’ results. He says that it looks like I have POTS, but he wanted to have some “orthostatic fun” in the office just to see. He measured my heart rate and blood pressure while laying down, sitting up, and standing.  Sure enough, my blood pressure dropped really low and my heart rate increased up to 150. Yep, he’s pretty convinced that it is POTS, but because of the missed information in previous cardio tests, he wants to rerun them again just to make sure it’s not something “easier” or misdiagnosed.

In my echocardiograms from 2005 and 2007,  he noticed that there was what he called “abnormal electricity” shown, but the EKG didn’t catch it, so it was dismissed. It happened again in my 3D echo from last year. Also, the 3D echo from 2014 showed I had pericarditis, which is a typical sign of autoimmune (particularly Lupus), but, of course, need to rule out other possible causes as well. And finally, my halter monitor from 2007 showed abnormalities and heart beats exceeding 160 bp, which was also dismissed during that time. So he ordered a 3D echo again, to see if the pericarditis has cleared on its own or if it’s gotten worse. He also wants to evaluate the possibility of a hole in my heart (which many people are born with, although it usually clears up on its own as you get older) since they can’t confirm the cause of my hypoxemia, other than the mild sleep apnea that was confirmed through my sleep study last year (although he doesn’t believe that is what is causing it, because again, it was very mild and happens sporadically during the daytime as well). So I’ll be back in the hospital tomorrow to complete all of these cardio tests. If  all the differential diagnoses are excluded, then he will be referring me to the dysautonomia clinic for further treatment, but was comfortable enough to put down Postural Orthostatic Tachycardia Syndrome as an official diagnosis. Again, something I have been saying since I started looking for answers. Finally! So we’ll see how testing goes tomorrow and I guess go from there.


So what does this all mean?

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It’s more than just ONE cause, obviously.

There are multiple conditions feeding off of one another, 

making my conditions not only rare,

but also complicated to treat and manage.

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Here’s what is on the table (so far):

Dysautonomia:

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More specifically —> Postural Orthostatic Tachycardia Syndrome (POTS):

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Nutcracker Syndrome:

“The nutcracker syndrome is quite a rare condition. It is due to the compression of the distal segment of the left renal vein (LRV) between the superior mesenteric artery (SMA) and the aorta (also called left renal vein entrapment).  This syndrome needs treatment when symptoms are disabling” (Hartung, O., 2009, p. 246).

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Superior Mesenteric Artery Syndrome (SMAS):

“Superior mesenteric artery syndrome (SMAS) is a digestive condition that occurs when the duodenum (the first part of the small intestine) is compressed between two arteries (the aorta and the superior mesenteric artery). This compression causes partial or complete blockage of the duodenum. Signs and symptoms may include abdominal fullness; bloating after meals; nausea and vomiting; and abdominal cramping that may be helped by lying in certain positions.” (NIH Office of Rare Diseases, 2014)

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May-Thurner Syndrome:

“May-Thurner syndrome (MTS) is caused when the left iliac vein is compressed by the right iliac artery, which increases the risk of deep vein thrombosis (DVT) in the left extremity. DVT is a blood clot that may partially or completely block blood flow through the vein. Even though DVT itself is not life-threatening, the blood clot has the potential to break free and travel through the bloodstream, where it can become lodged in the blood vessels of the lung (known as a pulmonary embolism). This can be a life-threatening condition” (ClevelandClinic.org)

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Symptoms and Causes of Low Cortisol Levels:

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A lower than normal level may indicate:

  • Addison disease, in which the adrenal glands do not produce enough cortisol
  • Hypopituitarism, in which the pituitary gland does not signal the adrenal gland to produce enough cortisol
  • Suppression of normal pituitary or adrenal function by glucocorticoid medications including pills, skin creams, eyedrops, inhalers, joint injections, chemotherapy

Other conditions for which the test may be ordered include:


Is this a final diagnosis?

Knowing how thing have gone in the past, it’s  highly doubtful.

Maybe there is more to the story…

Maybe there is less significance…

Only time will tell.

Again, I am left waiting…


Now if only I can get all my doctors organized and working together, maybe I can clear up what this all means and what needs to be done next. Surgery? Medications? Again, who knows… 

While I DO know for sure that NONE of these diagnoses will ever be “cured”, I’m hoping we can at least find a way to manage everything so I could hopefully live a semi-normal life again.

I still have to do a hydrogen/methane breath test next week, as well as upcoming appointments the week after with dermatology (to run biopsies on my skin rashes, hopefully to “catch” the autoimmune disease that’s hiding in my skin) and a follow-up with the vascular surgeon. Plus the results from the cortisol testing I did today and the cardio tests tomorrow. Let’s hope we can get the pieces put all together and figure out what’s next as far as treatment goes.

I guess I’ll just have to wait… something that is unfortunately becoming entirely too common at this point, but at least we’re getting somewhere… slowly. 

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