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

I shot for the sky, I’m stuck on the ground…

The sadness always follows a hard blow.

I know these feelings won’t last forever,

but it feels like it’s never going to get better. 

I feel like I am never going to get better.

It doesn’t help that I have been green with envy lately. One of the support groups I belong to for the compression syndromes has had multiple members just recently complete surgery or are scheduled to have it done soon. Despite the long recovery time, not to mention the pain and time spent in ICU, I can’t help but feel a twinge of jealousy. I’m happy they have doctors that listen to them and are willing to do research. And that they will hopefully be getting better. But I can’t help but WISH that was me.

Yes, I said it.

I am in fact JEALOUS of other people who are sick

and having surgery.

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Am I absolutely crazy or what? 

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I know I shouldn’t compare myself to others, but really, though, I am just sad that I feel like my doctors aren’t concerned about how this illness is affecting my whole life and that it seems to be getting progressively worse. Maybe that’s unfair to say, but it’s how I feel.

I mean yes, they’ve finally run some tests and tried medications, but nothing has made a difference in how I feel. There has been no improvement or relief thus far. Not everything is being documented in my medical records, according to the notes I am perfectly fine (just like my blood work). When I do get abnormal tests, they are blown off as insignificant. How can I not be sad?

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I had to put my rabbits up for adoption (still searching for a home) because I can’t clean their cages adequately anymore. My hands are so raw from all the rashes, they hurt to hold anything (even typing on the computer causes pain). My joints are so stiff and I’m too weak to carry the giant cages outside to the trash. I feel like I am falling apart.

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All I  want is to feel better. I’m willing to do or try anything to have one day of comfort. I just keep feeling worse each day that goes by, but no one besides me seems concerned about this. I’m so sick every time I eat. The pain, especially tonight, is so horrible it HURTS to breath. With every inhale I take I feel like I am going to throw up. I’ve only eaten a handful of tortilla chips today because nothing else will go down. How is this ok? or normal?

Must just be in my head then, right?

I’ve tried to take my mind off my sadness by attempting  the tricks the cardiologist recommended to help with the POTS, through water and salt loading (drinking tons of fluids and eating/drinking large amounts of sodium), and low-grade exercise. So far, I haven’t noticed much a difference, but that could be due to the fact that my stomach doesn’t seem to want to cooperate with either food or water intake these last few days. I’ve also been “running” on the elliptical for about 15 minutes a day. Even though I am not “pushing myself” too hard, my heart rate exceeds 200 b.p.m in less than 5 minutes. Shortly after, the pre-syncope comes and I have to lay on the floor until my heart rate goes back down. Today, I decided to check my blood pressure after working out. I waited until I had sat for 10 minutes or so, and my blood pressure read 28/26, with a heart rate of 135. I’m pretty sure I should be dead, according to the chart. And yes, I ran it twice because I thought it was an error. I am not sure how I was upright then, but definitely I feel the effects now.

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I am not sure if I should keep going with it or wait until my cardio tests come back. I did finally get an appointment with my primary care physician for tomorrow to get another referral to vascular surgery. After three days of calling and getting connected to the answering machine (that has been full since Friday – and yes, it was the voicemail of no return as well), so I drove down to the office to make an appointment. Yes, this is absolutely ridiculous, but at least I finally have an appointment. More testing on Wednesday in the hospital. On the bright side, at least some of the doctors are still trying. I’m just so tired at this point, I”m ready for this all to be over, but it doesn’t look like that will be the case anytime soon.

I’m sorry for the depressing post, but I just needed to get this all out of my head.

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Living with a chronic illness isn’t always about the fight to be strong.

Or motivating others.

Sometimes the hardest part of the fight is just getting through the dark times.

The times you’re in so much pain it hurts to breathe or even cry. 

Luckily, these feelings don’t last forever…

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“Hang on, when the water is rising

Hang on, when the waves are crashing

Hang on, just don’t ever let go…” (Plumb)

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The Sisterhood of the World Bloggers Award

So honored and humbled once again for being nominated by the amazingly talented Lore from 

The Modern Girl’s Guide To Being Sick.

I love her page because she not only discusses a variety of topics about living with chronic illness, but she offers some fabulous tips and reviews of beauty products to both cover symptoms and look fabulous, despite being sick.

The Rules:  Answer 10 questions and then nominate 7 other bloggers and ask them to answer the same 10 questions.

First the questions:

Why do you have a blog?

I started my blog so I could learn to express my feelings and tell my story about the realities of living with a chronic, undiagnosed illness. I didn’t expect anyone else to actually read it, or care, except for a handful of family members and friends. I also figured it would be an easy way to update everyone on the status of my testing or symptoms without having to repeat it over and over.

To my surprise, though, other people across the world started reading and following. Soon I was not only sharing my experiences with others, but I have been able to make connections with so many others who have gone through similar situations or experience some of the same symptoms. We have shared stories and tips in how to live day-to-day with our illnesses, dealing with both the good times and the bad. It helps me to not feel so alone anymore and not so ashamed of my condition.

What inspires you the most?

People who are brave enough to keep fighting and try to find the good in life, no matter how much life or their condition continues to knock that down. They find ways to persevere and remain strong. If they can do it, so can I. 

inspirational quotes, christopher reeve, best quotes about life, inspirational quotes today

Favourite animal and why?

I can’t pick just one. I love all animals, especially my own. They give me comfort when I don’t feel well, companionship for when I am lonely, lick my tears away when I am sad, and they don’t judge me for being sick. They are loving and loyal companions

I have a three dogs (2 min pins and a Yorkie) and two lionhead bunnies. While they are all loving and loyal companions, each one has their own personality and way of helping me cope with being sick.

Knuckles and Dahlia

Knuckles and Dahlia

Castro

Castro

Bruce Bunny Campbell and Norman Bunny Bates

Bruce Bunny Campbell and Norman Bunny Bates

What is your favourite colour?

I’m weird with my color choices. I’m drawn to purple when I am happy and hot pink & black when I am sad. Seems like it would be opposite, but I guess my mind just works differently.

Do you prefer the ocean or mountains?

Although I wake up every morning to the most amazing view of some of the most majestic mountains in the country, there is still nothing better than the smell of suntan lotion and salt water, the feel of the warm sand underneath your feet, and the excitement of catching the perfect wave.

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Tea or coffee?

I like tea, but I am addicted to coffee. 

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How many languages can you speak?

Only English fluently, but I know a lot of mish-mash broken language and phrases in Spanish, Russian, Latin and Chinese (but can’t keep a conversation going). 

What made you happy today?

A friend of mine brought me a small plate of homemade food (she knows I’m often too sick to eat a full meal) and stayed to visit with me, since my hubby left today for the funeral.

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What is your dream?

All I ever dream about is finding a diagnosis, not just theories or random diagnoses to just merely name the symptoms. That way I can learn to manage my illness better and have a better quality of life. It’s too hard to fight something you can’t see or even explain.  

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What is your favourite food?

My favorite has been and always will be pizza. Nice and gooey, greasy, cheesy, NY Style Pizza.

But food hates me, pizza included. 

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Secondly, here are my 7 nominations:

(In no particular order)

  1. Sunshines Beauty
  2. It’s {Pots}able
  3. Chaos, Cats, and Chronic Pain
  4. Achy Queen
  5. SexyAchyMoody
  6. CarrotsInMyCarryon
  7. Chronically Sarah Lynn

Take It From Me, It’s Not The End…

I try to remember to breathe in times like these, but that’s easier said than done.

I think the stress of everything I have going on in my life right now is really starting to wear me down.

I just feel like I’m stuck in this horrible cycle that never ends.

It’s a constant fight to keep going…

keep looking for answers…

keep everything afloat…

But I’m just so tired.

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It doesn’t help my symptoms have been out of control


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and that my medical appointments last week weren’t as positive as I had hoped for.

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On Thursday, I had a follow-up with my GI in the morning, followed by a CT Angiography of the Abdomen/Pelvis  ordered by my vascular surgeon to evaluate the extent of the Nutcracker Syndrome.

I have been struggling a lot lately with dealing with the “diagnosis” of  Lupus and all the other potential disorders the doctors were planning to evaluate, as well as having an extreme increase of symptoms, so obviously my emotions are all over the place. I was FINALLY starting to feel good about everything, ready to manage life with multiple, incurable conditions. But of course, everything turned upside-down once again.

My body has been trying to fight me ever since the changes in medications on June 1 when I saw the rheumatologist/immunologist. I figured I was just adjusting, but it just kept getting worse day by day. I’ve had to miss work AGAIN because I haven’t been able to more than 2 feet from a bathroom for more than 15 minutes at a time, which is being generous. Plus I’m getting new patches of hair loss, new and increased amount of skin rashes, nausea, dizziness, episodes of falling over, etc. etc. It’s been a nightmare. I finally call my boss and let her know how awful I am doing and I need to see the doctor to get control of my symptoms before I can even consider coming to work. So I am back out on leave, hoping to get approved for payment this time around, now that I have a diagnosis.

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I schedule with my Primary Care to do the paperwork but wasn’t able to get in until this past Friday (almost two weeks out). So I message the rheumatologist/immunologist and tell her about my increasing symptoms, as well as inquire about the remaining blood tests that were outstanding and were supposed to explain an abnormal test result. She replies that none of these symptoms are typical with the new medications, but I can stop them if I want. There’s no mention of the bloodwork. I figure I would just ask the GI doctor when I did my follow-up appointment since they work in the same practice. (They’re even in the same suite and use the same nurses.) No problem.

My follow-up was set for 7:30 AM Thursday morning, with the CTA scheduled at another hospital at 10 AM (both in Denver, about an hour away). I’m instructed for the test to not have caffeine beforehand, as well as no food or water for four hours beforehand. I didn’t even bother to go to sleep the night before, as my symptoms kept me up all night in pain, and I had to be up at 4 AM to get ready and make the drive anyways. So here I am A) exhausted, B) caffeine deprived, and C) petrified that I won’t be able to make it the full hour in the car with how severe my symptoms have been lately. My anxiety was high, to say the least. I also was unsure how this appointment was going to go, considering my last GI tests came back normal. So I knew as soon as the GI doctor came in to the exam room and started off by asking me, “So what, primarily, are your biggest concerns about your symptoms?”, that this appointment was going to be different than all the others.

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I tell her about my increase in symptoms.

How I spend every moment either in or near a bathroom.

How my skin is erupting everywhere.

The exhaustion I feel.

How my body is destroying my life.

And how frustrating it is to be so sick every single day,

but test after test is normal.

It makes no sense.

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She questions me on my stress, past medications I’ve tried for the IBS, and what elimination diets I have tried. 

I tell her I’m starting to believe that it’s not a problem IN my stomach at all.

Could the Lupus cause problems in my GI tract without showing up in testing?

Or the dysautonomia?

What about that abnormal blood test?

Or the ones that they kept saying they were waiting to come back?

She’s quiet while she looks through the records.

She sees the abnormal test but has no idea what a viper venom test result means.

Everything else came back normal. No one had called me?

Nope. Been almost three weeks.

She mentions that the rheumatologist/immunologist noted in my chart that she DOES NOT suspect ANY autoimmune condition at this time and my new medications were for allergies, including the hydroxychloroquine.

No, that’s is NOT what she told me. My husband chimes in as well.

She thinks it’s odd, considering hydroxychloroquine IS for Lupus, not allergies.

She’s gonna send her a note, something is not right.

No mention of the dysautonomia discussion either.

Why am I still on this med if it’s definitely NOT Lupus?

What is this abnormal blood test?

I need to know! I’m on leave from work AGAIN. This will impact my job.

My primary care doctor noted it. My neurologist noted it. The vascular surgeon noted it.

She says she did receive their reports and thought it was odd they had Lupus noted, but there was no record in their system from the diagnosing doctor.

I’m about to panic…

She decides she wants to run my cortisol levels to see if it’s “stress” or something else and a stool culture to rule out parasites or infections, although my stomach biopsies were all normal. She’ll also order a new PPI to see if that helps. There’s nothing left to check or try at this point. I want to cry, I can’t breathe.

I wanted to tell her, “Don’t give up on me, I can’t LIVE like this.”

But I didn’t.

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Instead I sit in the chair, quiet. I’m at a loss.

How could this be stress?

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These were taken in the office AT that appointment. She watched it happen before her eyes. But there’s no explanation. No reason for the symptoms. 

I try and keep it together while I am in the office. I go upstairs and get my blood drawn… again. The phlebotomist is rough and bruises me. I swear, even my veins are tired. Then we drive to the other hospital for my testing. The ride starts off quiet, but I feel my blood boiling….

How DARE she not put it in my record.

How could she say that I have NO AUTOIMMUNE symptoms? 

Why am I taking this medicine, which COULD be making me sick?

She told me I could quit it if I wanted… but that it was both the best and safest medicine for me.

SHE’s the one who mentioned that it DEFINITELY was AUTOIMMUNE.

And she was the FIRST of two specialists to mention the dysautonomia.

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All my planning. 

All the books I ordered.

The research I’ve done.

The people I’ve told.

Now I don’t have Lupus?!?!?

My husband consoles me. He says she probably didn’t remember, she’s always going in multiple directions.

It was probably a mistake, the GI doc will message her and get it straightened out…

I weep.

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I don’t want to do this test. 

I am tired. I don’t feel good. I’m heartbroken.

I almost vomited in the machine the last time. 

What’s the point?

The vascular surgeon doesn’t believe in Nutcracker Syndrome.

It’s rare and doesn’t make sense.

But I might be that special case…

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decide to do the test anyway.

I’m weak from lack of sleep, illness, and crying. I’m shaking because I don’t want to go through what I did the last time I had a CT. I felt so sick with the contrast on the normal CT Scan, and my face got “burned” and my lymph nodes swelled. At least there wasn’t barium involved this time. 

The hospital is brand new, it’s beautiful. It looks more like a boutique hotel. Or a mall. Some kind of fancy. I tell the radiology technician about my issues last time with the contrast. She’s never heard of ANYONE who had those symptoms. But they’ll watch me closely. And if I have symptoms at home, to call my doctor for help. Ok…

She tells me they push the IV contrast in a CTA MUCH faster than the CT scan, so there’s a possibility it may make me sicker than the last test. Oh dear god. My head is not in the right place for this kind of torture today. I’m panicking. There’s nowhere to vomit in the machine, except all over yourself and the machine. And that machine is not cheap to replace.

I’m having a panic attack,

I don’t want to do this anymore.

I so TIRED of doing this.

And for what?

I don’t WANT to be sick anymore.

I didn’t choose this, this is not what I wanted for my life.

I want to stop spending all of my days in doctor’s office and hospitals.

I don’t want to keep testing, for no answers.

I’m losing my sanity.

I’m losing my faith.

I’m losing my life.

The  technician hands me gauze doused with rubbing alcohol. Tells me to put it under my nose, it helps with the nausea. Surprisingly, it worked. I held as still as I could, despite trembling so hard that I could feel my bones vibrating. Five minutes later, it was over. I’m jumping off the table before she can even take out my catheter. I feel like a giant baby. I feel weak and pathetic for being so anxious about a silly test. Probably test # 100 in the last couple years. (well maybe not THAT many…) I try to act fearless and strong, but I was a coward that day. 

I stumble out of the hospital, feeling faint and having to hold on to my husband to not pass out in the middle of the parking lot. We drive the hour it takes to get home. I get coffee for the drive, but I fall asleep while drinking it. When we arrive home, I climb into bed. I’ve had enough for the day. By the time I wake up, six hours later, my face is  burned red and my lymph nodes are swollen. All the doctor’s offices are closed, so there’s no one to call for assistance. I give up. This is the new normal for me, or so it seems.

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I followed-up with my primary care doctor the next day, the one I had all the issues with months back. I almost didn’t go but knew I had to get paperwork done and had to decide if I should continue treatment or not, as well as see what she recommended as far as work. I tell her about the issues with rheumatology/immunology and how I have no idea if I have lupus. Perhaps I had jumped the gun by announcing it. I guess I was just excited. She, of all people, says she believes my symptoms meet the criteria, even if the bloodwork doesn’t show it. She recommends staying on the medications and says she is keeping it as my diagnosis, at least for now. She says there’s no doubt it’s autoimmune, whether Lupus or not. 

However, she still believes that I have a disease that only I have, that I’m rare in my illness, and I need to be seen by the MAYO or the NIH clinic. (which I’m still not sure is true, but as more tests come back normal, I’m starting to think she may be right.) But at least she still believes me. Talk about finding inspiration from an unlikely source again. It was like when she first became my doctor, always taking me seriously and listening to my theories on my health, which is why I really liked her.

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Maybe I’ll stop searching for a new PCP for now. I have enough on my plate anyway.


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I did  finally have one day of relief this week, with only minor symptoms.

Every other day has been excruciating. 

I’m almost too tired to function.

Definitely can’t be too far from a bathroom, either.

And because my body hates me,

the flood gates decided to open up once again.

My endometrial ablation failed.

Now I’m clotting blood just like I was before having the procedure.

*Sigh* Only me.

Only me.

I’ll call the doctor tomorrow

and wait for the rest of my test results and what the rheumatologist says.

Until then, I’m stuck.

Still waiting, still searching

for any type of certainty

in anything in this life.

But mostly, in finding a diagnosis.

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