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 question who I am…

Have you ever felt lost in your illness? 

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Lately, that has been me. Lost. Both January and February beat me up pretty badly. If anything could go wrong, it did go wrong. It’s like I could not win, no matter what I did. And the more I tried, the more things went wrong. Problems with testing, issues with doctors and medical records, trying to fight 3 disability cases at once, managing to keep up in school (barely), and a myriad of symptoms coming down on me at once. Just thinking back on it makes me tired. Not to mention, it was also the 12th anniversary of my mother’s death on February 25, which also happens to be my husband’s birthday. Needless to say, I’ve been busy.

Likewise, I just surpassed the one year anniversary of when I left my job to go on medical leave, only to get fired from my job a few months later because I wasn’t able to tell them when I’d get better. The harsh reality was – I might not ever be better. And we still didn’t have all the answers. Even now, there are still so many things in the air.

Somewhere, between all the frustration I’ve felt over the last few months, I suddenly found myself feeling really sad and hopeless about my illness. It had officially worn me down and for the first time in over twenty years, I had to admit – I was depressed – and I hated myself for it. So here I was:

A Warrior. A Fighter. A Hypocrite?

This must be a bad joke. After years and years of trying to prove that my symptoms  were not caused by depression and I now have to eat my words. Great – What else could go wrong?Just the idea of being depressed made me sick – as if I wasn’t sick enough already. How could I let this happen?  I didn’t want to be that way, but I also couldn’t stop myself either.It made me question my sanity. What if I was actually sick from depression? Maybe it has been depression all along?

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I honestly didn’t know anymore. The sadness from somewhere out the blue and overwhelmed me so fast that it scared me. I was too tired to fight, though, I already had too much on my plate. I decided to accept the feelings and let them in. Literally speaking out loud, I just said fuck it – I’m depressed! (excuse my french) and I wallowed into the depth of self-pity for a while.

Hiding from my husband in the wee hours of the night, I’d obsessively search  Youtube for the saddest songs I could find, you know – the ones with the saddest lyrics and heart-wrenching video to go with it. I’d hurl myself in the bathtub and simply cry. And not just cry, I would sob – snot and everything.

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It was on one of these nights, not long after I wiped my tears away for the night, that it happened – I finally broke.

 Honestly, it’s hard to remember the explicit details of that night, but they really don’t matter much anyway.  I do recall, though, that the salt on my skin was still fresh enough I could taste my sadness with every breath and exhale. It made me feel nausea. Who knew that only moments later, I would be drowning in my tears.

Still, the fact of the matter is that someone very close to me said some of the harshest words I had ever heard about both me and my illness to date. And these words cut me much deeper than anything ever had before. Which, I have to tell you, is not an easy task considering what I’ve gone through trying to get a diagnosis for all these years.

I just simply shattered.

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A lot of things were said that night, but one thing, in particular, stood out to me. I couldn’t get it out of my head, either. Those words became an obsession and I have no idea why. Worse things were said throughout the course of that evening, things that should have hurt me much worse. But yet, these words were like a broken record to me, playing the same terrible song over and over.

“You aren’t the hero that everyone thinks you are…”

Ouch. 

I know this probably sound silly to anyone reading this, but it wasn’t to me. To this day, I still don’t  understand why this hurt me as bad as it did. I can laugh off being called crazy. I can ignore being told that I am either this or that. I don’t care who does or does not like me. Trust me,  I have way more than enough to worry about. Perhaps it was because this person questioned my self-worth or purpose, the reasons I continue to fight and on why I keep searching for answers. It made me not only question myself and my sanity but everything I have worked so hard for up to this point – including this blog.

Who am I to share my story? 

I’m just a fool. A hypocrite. A fake.  A phony.

Does anyone have a rock I can hide under?

It took more than a few weeks for the replay of that night to finally stop playing altogether – that person and I made up long before I  recovered from this event. Like I said, I just couldn’t let it go.  I needed a revelation.

It was after another night of crying on the bathroom floor, wallowing in self-pity as usual. You know that moment when you think of something super funny or smart to say, but it’s already after the fact? And you become mad at yourself because you didn’t think of it at the time? And now you wish you had something instead of standing, looking stupid? This is exactly how I felt.

Wait a minute – I never called myself a hero… ever

I call myself a warrior – The Undiagnosed Warrior – to be exact.

There’s a difference… 


Simple Definition of hero

(From the Merrium-Webster Dictionary Online)

  • : a person who is admired for great or brave acts or fine qualities

  • : a person who is greatly admired

  • : the chief male character in a story, play, movie, etc.

Simple Definition of warrior

(From the Merrium-Webster Dictionary Online)

  • : a person who fights in battles and is known for having courage and skill


That’s it – that’s exactly it.  How did I not see this before? 

Think about it for a moment…

In modern culture, most people hear the word hero and picture a big strong fireman that rescues an entire family from burning house. He even saves the family’s dog. He’s a hero… What about all the other people we look up to as heroes?

  • The people who do extraordinary things while battling cancer? Lance Amstrong, for instance. He accomplished so much while battling cancer. He’s a hero…
  • What about Spiderman or Batman? They’re called super heroes.
  • U.S. soldiers and veteran?  obviously heroes – they have fought/are fighting many battles for our nation. Many sacrificed with their lives.

There are so many examples and they have all done amazingly brave things in their lifetime. They are heroes in the true tdefinition of the word.

Admired. Brave. Great Acts. Chief Male Character.

 Of note: not every example is meant to exaggerate the gender bias (insert he or she in all the examples above). That’s not the point I’m trying to make, although men generally do come to mind first when thinking of the word hero. Hell, it’s even in the definition… but I digress. Not that there is something wrong with being called a hero, but heroes generally look for personal victories and  fight to win – and that’s just not me at all.

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 So, what about warriors?

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The title of a warrior is much more appropriate, don’t ya think?

For example, a warrior…

  1. Fights in battles…
    • against their own body – every single day.
    • just trying to live  a normal life – as much as physically possible, anyway.
    • to simply keep employment.
    • with/against doctors and other healthcare professionals – it can go either way.
    • with insurance companies – just to receive lifesaving treatments or medically necessary tests.
    • against disability.
    • against disability insurance companies or social security.
    • to spread awareness through advocacy.
    • to develop a treatment plan.
    • to hopefully one day find a cure.
    • sometimes just to get a diagnosis.
    • to keep relationships with both friends and family.
  2. Has Skills…
    • such as getting a full workout just in standing up.
    • such as being proficient in first aid
    • to predict the weather based on how we feel.
    • of adapting to various situations, no matter how awkward.
    • consisting of medical knowledge in almost every field of medicine available.
    • of balancing too many things at once.
    • in knowing where every bathroom for the next 20 miles is (and how clean they are).
    • like being able to sleep anytime and anywhere.
  3. Has Courage…
    • to live with the unknown.
    • to have test after test, even if they’re painful.
    • to get out of bed, even when not feeling good.
    • to face the things that scare them.
    • to keep searching for answers and uncover mysteries
    • to go to doctors appointments, even when they’re told their symptoms are in their head.
    • by keeping the faith.
    • in knowing there is a larger purpose for being sick, even if they don’t understand why yet.

Again, I could list thousands of examples for each, but you get the point.

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Who cares if I’m not the hero that everyone thinks I am? 

The world needs more warriors anyway…

Needless to say, I didn’t feel so sad anymore. In fact, I actually felt pretty strong – and maybe even a little proud of myself. The depression had lifted and I was me again.

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Catheter Venography (Venogram)

Well, I finally went for my venogram yesterday after waiting since September and being told by the GI surgeon to keep searching for answers to my symptoms. The vascular surgeon agreed to evaluate the compressions again  and determine whether or not surgery is needed at this point to fix the identified  vascular compressions.

According to the test results…. the answer is a clear and definitive yes.


(The following information was retrieved from radiology info.org.)

What is a venogram?

A venogram is an x-ray test that involves injecting x-ray contrast material (dye) into a vein to shows how blood flows through your veins. This allows a physician to determine the condition of your veins.

An x-ray (radiograph) is a noninvasive medical test that helps physicians diagnose and treat medical conditions. Imaging with x-rays involves exposing a part of the body to a small dose of ionizing radiation to produce pictures of the inside of the body. X-rays are the oldest and most frequently used form of medical imaging.

A venogram is commonly used to:
  • assess the status of a vein or system of veins
  • find blood clots within the veins
  • assess varicose veins before surgery
  • find a vein in good condition to use for a bypass procedure or dialysis access
  • help a physician place an IV or a medical device, such as a stent, in a vein
  • guide treatment of diseased veins.

How should I prepare?

Other than medications, you may be instructed to not eat or drink anything for several hours before your procedure. You may be allowed to drink clear liquids on the day of your procedure.

You should inform your physician of any medications being taken and if there are any allergies, especially to iodinated contrast materials. Also, inform your doctor about recent illnesses or other medical conditions.

Women should always inform their physician and x-ray technologist if there is any possibility that they are pregnant. Many imaging tests are not performed during pregnancy so as not to expose the fetus to radiation. If an x-ray is necessary, precautions will be taken to minimize radiation exposure to the baby. See the Safety page for more information about pregnancy and x-rays.

What does the equipment look like?

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The equipment typically used for this examination consists of a radiographic table, one or two x-ray tubes and a television-like monitor that is located in the examining room. Fluoroscopy, which converts x-rays into video images, is used to watch and guide the progress of the procedure. The video is produced by the x-ray machine and a detector that is suspended over a table on which the patient lies.

Other equipment that may be used during the procedure includes an intravenous line (IV), ultrasound machine and devices that monitor your heart beat and blood pressure.

How does the procedure work?

X-rays are a form of radiation like light or radio waves. X-rays pass through most objects, including the body. Once it is carefully aimed at the part of the body being examined, an x-ray machine produces a small burst of radiation that passes through the body, recording an image on photographic film or a special detector.

Different parts of the body absorb the x-rays in varying degrees. Dense bone absorbs much of the radiation while soft tissue, such as muscle, fat and organs, allow more of the x-rays to pass through them. As a result, bones appear white on the x-ray, soft tissue shows up in shades of gray and air appears black.

Veins cannot be seen on an x-ray; therefore, a special dye (called contrast material) is injected into veins to make them visible on the x-ray.

How is the procedure performed?

This examination is usually done on an outpatient basis.

A venogram is done in a hospital x-ray department.

A venogram is performed in the x-ray department or in an interventional radiology suite, sometimes called special procedures suite.

You will lie on an x-ray table. Depending on the body part being examined (e.g., the legs), the table may be situated to a standing position. If the table is repositioned during the procedure, you will be secured with safety straps.

The physician will insert a needle or catheter into a vein to inject the contrast agent. Where that needle is placed depends upon the area of your body where the veins are being evaluated. As the contrast material flows through the veins being examined, several x-rays are taken. You may be moved into different positions so that the x-rays can take pictures of your veins at different angles.

What will I experience during and after the procedure?

You may be asked to remove some or all of your clothes and to wear a gown during the exam. You may also be asked to remove jewelry, removable dental appliances, eye glasses and any metal objects or clothing that might interfere with the x-ray images.

You will feel a slight pin prick when the needle is inserted into your vein for the intravenous line (IV) and when the local anesthetic is injected. The arteries have no sensation. Most of the sensation is at the skin incision site which is numbed using local anesthetic.

As the contrast material passes through your body, you may get a warm feeling.

You may have a metallic taste in your mouth. Your arm or leg may feel like it is getting numb or “falling asleep.” After the test is complete, this feeling will go away.

You must hold very still and may be asked to keep from breathing for a few seconds while the x-ray picture is taken to reduce the possibility of a blurred image. The technologist will walk behind a wall or into the next room to activate the x-ray machine.

When the examination is complete, you may be asked to wait until the radiologist determines that all the necessary images have been obtained.

A venogram takes between 30 and 90 minutes to perform. Fluids will be run through your IV to remove the contrast material from your veins. You will also be instructed to drink a lot of fluids for the next day. After the catheter is removed, a bandage will be placed on the IV site. Then you will be observed for any signs of complications, such as bleeding from the injection site, infection or an allergic reaction.

What are some of the possible risks?

  • There is a very slight risk of an allergic reaction if contrast material is injected.
  • In rare cases, a venogram can cause a deep vein thrombosis.
  • There is a risk of injury to the kidneys with contrast injection. Patients with impaired kidney (renal) function should be given special consideration before receiving iodine-based contrast materials by vein or artery. Such patients are at risk for developing contrast-induced nephropathy, in which the pre-existing kidney damage is worsened.
  • Any procedure that involves placement of a catheter inside a blood vessel carries certain risks. These risks include damage to the blood vessel, bruising or bleeding at the puncture site, and infection.
  • There is always a slight chance of cancer from excessive exposure to radiation. However, the benefit of an accurate diagnosis far outweighs the risk.
  • The effective radiation dose for this procedure varies.
  • Because children are more sensitive to radiation exposure than adults, equipment and procedures will be monitored in order to deliver the lowest possible dose to young patients.

What are the limitations of venography?

The results of a venogram can be altered or affected if you are unable to sit still during the procedure since that will affect how the contrast material moves through your veins. Further exams may also be required if the more central veins located in the pelvis, abdomen and chest are not fully evaluated with contrast injection via an IV placed in the extremity.

In some cases, ultrasound is a preferred procedure because it has fewer risks and side effects.


My personal Experience:

 I was so nervous about having the procedure because they hadn’t given me much information about it or the plan of action for the day. I finally received a call from the hospital on Monday with a check-in time and brief instructions about prep for the procedure. I was to check into the hospital at 6:30 AM Thursday morning and no food after midnight and drinks after 4:30 A.M. Not too bad, I thought.

Tuesday I had received three more phone calls from the hospital staff about doing pre-med prior to the procedure since the last three times I’ve had an iodine injection I got a blistering rash, almost like a sunburn, within a few hours of each procedure. This time around, I was to take 50mg of Prednisone 13 hours before, 7 hours before, and 1 hour before, in addition to 50mg of Benadryl an hour before the procedure started (in addition to all my normal meds – it was a lot of drugs in a short period of time, making me even more nauseated than my nerves had already caused me to feel).

Since we had such an early check-in time, in addition to living almost an hour and a half away from the hospital, we decided to get a hotel room down the street the night before. It was great not having to wake up at 3:30 A.M. to leave by 4:30-5:00 A.M. – making it so much less stressful of a morning. While I didn’t get a ton more sleep it was helpful to stay overnight regardless. We checked into the hotel around 7:30 P.M and didn’t have to worry about traffic or rushing to be there on time.

When we arrived at the hospital on Thursday morning, I was still pretty nervous since I did not know what to expect. There was a line to check-in and it left us a little behind. I signed all my paperwork and I believe I got called back around 6:50 A.M. Almost immediately, it was rush, rush, rush. I guess since I was having anesthesia because of a family history of malignant hyperthermia, instead of the traditional twilight sedation usually given during this test, I was scheduled for the operating room at 7:30 A.M. instead of 8:30 A.M. You could feel the pressure in my preparation room as everyone scurried around getting me situated to go. First they had me change out of every inch of clothes and put on a very fashionable hospital gown with neon yellow compression socks. I climbed into bed, praying I wouldn’t flash the large group of people who had now joined me in the hospital room. Luckily, I got covered in layers of warm blankets that covered me quite successfully.

Next, my room nurse quickly tried to put in my catheter, but could not feed the catheter into my vein – said my skin was too thick (which I had never heard)- and I began to swell and bruise almost instantly. The nurse then gave up and one of the medical student working on my paperwork decided to take a shot at it. He was able to get it in through the vein located on the side of my wrist on his first try, but he covered a whole side of the hospital bed and himself with my blood in the process. Quite messy but at least the catheter was in, right?

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The first IV catheter attempt

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The bruise is finally settling in

They both then drew my blood for a CBC and clotting times, followed by making me pee into a cup to make sure I wasn’t pregnant. Although I was VERY sure that I wasn’t, I know that it is typical protocol so I obliged and didn’t fuss about it – there wasn’t time to do so anyways.

Component Results

Component Standard Range Your Value
PREGNANCY TEST URINE Negative

COMPONENT RESULTS

Prothrombin Time 11.7-14.1 seconds 13.2
INTERNATIONAL NORMALIZED RATIO 0.9-1.1 1.0
The usual therapeutic range is 2.0-3.0.

High risk therapeutic range is 2.5-3.5.

 

Component Results

Component Standard Range Your Value
WHITE BLOOD CELL COUNT 4.0-11.1 10*9/L 9.2
RED BLOOD CELL COUNT 4.18-5.64 10*12/L 4.62
HEMOGLOBIN 12.1-16.3 g/dL 14.7
HEMATOCRIT 35.7-46.7 % 42.0
MEAN CORPUSCULAR VOLUME 80.0-100.0 fL 90.9
Mean Corpuscular Hemoglobin 27.5-35.1 pg 31.8
Mean Corpuscular Hemoglobin Concentration 32.0-36.0 g/dL 35.0
PLATELET COUNT 150-400 10*9/L 329
MEAN PLATELET VOLUME 9.6-12.8 fL 9.9
RED CELL DISTRIBUTION WIDTH CV 11.7-14.2 % 13.2
RED CELL DISTRIBUTION WIDTH SD 37.1-48.8 fL 43.2
Neutrophil % 91.5
LYMPHOCYTE PERCENTAGE 7.4
MONOCYTE PERCENT 0.9
EOSINOPHIL PERCENT 0.0
BASOPHIL PERCENT 0.1
IMMATURE GRANULOCYTE PERCENT 0.1
ABSOLUTE NEUTROPHILS 1.8-6.6 10*9/L 8.4
Lymphocyte Absolute 1.0-4.8 10*9/L 0.7
Monocytes Absolute 0.2-0.9 10*9/L 0.1
Absolute Eosinophils 0.0-0.4 10*9/L 0.0
Basophils Absolute 0.0-0.2 10*9/L 0.0
Immature Granulocytes Absolute 0.0-0.05 10*9/L 0.0
NRBC PERCENT 0 % 0.0
NRBC ABSOLUTE 0 10*9/L 0.00

After I got back in my bed, the anesthesiologist assistant came in to discuss what was planned as far as keeping me asleep. I’ve usually chatted with the anesthesiologist department days before the procedure but this time around I hadn’t and I was worried whether or not the hospital staff  could handle it – other hospitals had canceled on me in the past because of the complexity of the condition and the deadly consequences of Malignant Hyperthermia Reactions. She was very thorough in getting a detailed history on my case, pretty much assessing each one of my body systems. That in and of itself was refreshing, especially because I have a long history of complications and most doctors don’t take the time to look at the full picture as a whole. The main anesthesiologist came in during this time as well, very curious about my family history of malignant hyperthermia. Most hospitals have never seen a case, so the doctors are usually quite interesting in knowing the extent of the condition and who else in my family has it.  And again, he reiterated they’ll take caution to make sure nothing happens while I’m under through monitoring the entire time – I breathed a sigh of relief. 

Malignant hyperthermia (MH) is a potentially fatal, inherited disorder usually associated with the administration of certain general anesthetics and/or the drug succinylcholine.
The disorder is due to an acceleration of metabolism in 
skeletal muscle. The signs of MH include muscle rigidity, 
rapid heart rate, high body temperature, muscle breakdown andincreased acid content. Immediate treatment with the drug dantrolene usually reverses the signs of MH. The underlying 
defect is abnormally increased levels of cell calcium in the skeletal muscle.
There is mounting evidence that some patients will also 
develop MH with exercise and/or on exposure to hot 
environments. Without proper and prompt treatment with 
dantrolene sodium, mortality is extremely high. The best way to protect yourself, your family, your patients and facility,is to be prepared before it's too late. 
(Taken from http://www.mhaus.org/)

Originally they were planning to use Propofol, which I had used in the past and is quite safe for individuals with malignant hyperthermia, but my drugs somehow changed by the time I was back to the OR and I was given Versed instead. Thankfully, though, they gave me a number of anti-nausea medications, including a scopolamine patch and an injection of Zofran. I always appreciate it anti-nausea meds before going under because I am nauseated enough as it is without the help of anesthesia.

Once the anesthesiologists left, the vascular surgeon came to check to see how much longer until we were ready to go. We were only a few minutes away – waiting for test results at this point. The vascular surgeon asked if I had any questions, and of course I did. My biggest worry was they were going to to do surgery while I was under without talking to me about it first – just a hunch- a correct one from what was said when I had arrived at the hospital that morning. While a little awkward, I knew I had to express to them that I wanted nothing until we had more time to discuss all the options available for treatment and what  would be the best course of action with the longest results. I was also concerned about fixing one or two of the compressions, while not fixing the others, and the damage it could cause later down the road – I’ve heard hundreds of horror stories and I didn’t want to become one of them. Thankfully, the vascular surgeon agreed with my logic, but I can’t help but wonder what would have happened if I had not opened up about my concerns. Would they have done the surgery without consent? Who knows.

A minute or two after  the surgeon left, another nurse came down to escort me to the OR. We joked around about how we both needed more coffee that morning. I couldn’t even have any that morning and I was already having trouble staying awake (who needs anesthesia anyways -I’ll be asleep in minutes) I asked her to slip some coffee in my IV while I was waking up; She thought caffeine eye drops would be more effective. Our banter broke the feelings tension and  fear I was slowly building up along the way.

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As soon as we got to the OR, I was placed on the operating table, underneath the x-ray machine, and hooked up to every monitoring advice imaginable. They gave me a quick shot of versed and I was out, don’t think I last more than 10 seconds.

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I woke up in my hospital room around 10:00 A.M. The procedure didn’t take too long, but I had slept through in its entirety. I feel  a huge bandage down the side of my neck, causing me to be confused. I was so far out of it still.
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I was told they decided to enter through my jugular, instead of the femoral as planned – I know there was a reason for this, but I honestly can’t remember. The nurse tells me I have to wait at least 45 minutes until I can be discharged. She hands me water to drink and asks if I’d like to watch TV – I didn’t. I just wanted to go back to sleep, which I did.

The vascular surgeon checks in with me, telling me how the procedure went well and that they did re-verify the extent of my Nutcracker Syndrome and May-Thurner Syndrome, and confirmed that I do have Pelvic Congestion Syndrome as well. They did not look at the SMA Syndrome or the Celiac Plexus since they only focused on my veins today. I was still out of it when he was talking, but I heard him say my renal vein was at a 10. Although it wasn’t really clear, I believe he was referring to the pressure gradient of my renal vein – which anything above the number 3 is when surgical intervention is typically recommended. He said to set up an appointment in a week or two to go over surgical options. I thanked him and fell back asleep.

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Venography for Nutcracker Syndrome

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Pelvic Congestion Syndrome – Ovaries

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May-Thurner Syndrome

At exactly 10:45 A.M. my husband came into the room. He is frustrated because he couldn’t find where I was recovering. He was sent back and forth across the hospital twice before decided to just go back to the place we started, which was exactly where I was at the whole time. I chugged some water down and paged the nurse – I can go home now, right? She comes in, unhooks me from all the machines, and goes to the lockers to retrieve my clothes. I quickly get changed and it’s over. Surprisingly not too bad, but I was still out of it when I left the hospital. All I wanted, though, was coffee. Dear god, I NEED coffee. Thankfully, my husband was nice enough to stop on the way home.

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When the medications wore off that afternoon, that was when the pain actually set it. It was too bad until I tried to move in any way. You don’t realize how much you use your neck muscles for minimal movements. They advised I’d be in pain for the next 48 hours and then it should subside. The pain seems to be getting better hour by hour, but still quite uncomfortable overall. I spent the afternoon on the couch, afraid to move. I slept most of yesterday afternoon, early into bed last night, and slept in again today. Evidently I was extremely tired. I do have restrictions to follow for the next few days, such as no strenuous activities or lifting anything over 20 lbs for the next four days, but otherwise the whole thing was not too bad. 

I was able to take my bandage off tonight, which was great since it was really starting to irritate the skin underneath it. The hole in my neck doesn’t look too terrible either. I expected much worse.

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The remaining hole in my neck

Now I just have to wait until next week to decide if or when I am having surgery, depending on what they recommend.

Maybe there will be surgery for Christmas after all… I guess we’ll see.


References:

Malignant Hyperthermia Association of the United States (2015). What is Malignant Hyperthermia? MHAUS Website. Retrieved on December 04, 2015 from http://www.mhaus.org/

Society of Interventional Radiology (2015). Venography (Venogram). Radiology Info Website. Retrieved on December 04, 2015 from Radiologyinfo.org.

Update Part 3: The Cardiac MRI

Continued from Medical Testing Updates Part 1, Part 2, and Part 2.5


Despite the numerous amounts of medical testing I have been exposed to over the years

in my search for a diagnosis, I had yet to have an MRI.

I’m usually pretty calm about medical testing, unless of course I have to EAT or DRINK contrast – because that is an entirely different beast on its own – but I had heard so many horror stories about MRI’s over the years and I was actually a little nervous.

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Although I don’t consider myself to be claustrophobic, per say, I do have a REALLY hard time sitting still. And it’s REALLY important to stay still when the machine is taking images and they usually take a lot longer than other radiological tests, like a CT scan or a simple X-ray. I was so stressed I wouldn’t be able to make it through the whole thing without messing up the exam. Given, I do have ADHD but that wasn’t necessarily driving my fear, although it does presents its own problems with not being able to move at all.

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Mainly, it’s my usual course of symptoms that make lying still almost impossible at times. My joints lock up when I stay in one position for too long and when I am nauseated, forget it – there’s no way I can stay calm and immobile. If I don’t move around or am FORCED to lay down when I feel like I’m going to vomit, I panic. So, of course, I am extremely anxious as I’m changing into my sexy hospital gown and getting ready for the test, because if you remember from my last post  I was quite sick with symptoms that suddenly came on during the long drive to the hospital that morning.

Not to mention, the horror stories:

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5018I take off all my jewelry. My hair clips. My headband.

I’m paranoid that I forgot some metal in my body.

I really really really don’t want it torn violently out my body by this giant, magnetic machine.

Just when I think I am good, I remember one more piercing.

Damn, that was close

I wonder if the gadolinium cause a reaction similar to the iodine (in CT Scans)?

Please don’t let me get violently sick…

I really hate the unknown…

But I either do the test or live with the unknown forever.

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So, What Is Cardiac MRI?

 The photo shows a patient lying on a sliding table outside of a cardiac MRI machine. The table will slide into the machine, and the patient will lie quietly while the machine creates pictures of the heart.

Magnetic resonance imaging (MRI) is a safe, noninvasive test that creates detailed pictures of your organs and tissues.

MRI uses radio waves, magnets, and a computer to create pictures of your organs and tissues. Unlike other imaging tests, MRI doesn’t use ionizing radiation or carry any risk of causing cancer.

Cardiac MRI creates both still and moving pictures of your heart and major blood vessels. Doctors use cardiac MRI to get pictures of the beating heart and to look at its structure and function. These pictures can help them decide the best way to treat people who have heart problems.

Cardiac MRI is a common test. It’s used to diagnose and assess many diseases and conditions, including:

Cardiac MRI can help explain results from other tests, such as x-rays and computed tomography.

Doctors sometimes use cardiac MRI instead of invasive procedures or tests that involve radiation (such as x-rays) or dyes containing iodine (these dyes may be harmful to people who have kidney problems).

A contrast agent, such as gadolinium, might be injected into a vein during cardiac MRI. The substance travels to the heart and highlights the heart and blood vessels on the MRI pictures. This contrast agent often is used for people who are allergic to the dyes used in CT scanning.

People who have severe kidney or liver problems may not be able to have the contrast agent. As a result, they may have a noncontrast MRI (an MRI that does not involve contrast agent).

What To Expect Before Cardiac MRI

You’ll be asked to fill out a screening form before having cardiac MRI. The form may ask whether you’ve had any previous surgeries. It also may ask whether you have any metal objects or medical devices (like a cardiac pacemaker) in your body.

Some implanted medical devices, such as man-made heart valves and coronary stents, are safe around the MRI machine, but others are not. For example, the MRI machine can:

  • Cause implanted cardiac pacemakers and defibrillators to malfunction.
  • Damage cochlear (inner-ear) implants. Cochlear implants are small, electronic devices that help people who are deaf or who can’t hear well understand speech and the sounds around them.
  • Cause brain aneurysm (AN-u-rism) clips to move as a result of the MRI’s strong magnetic field. This can cause severe injury.

Talk to your doctor or the MRI technician if you have concerns about any implanted devices that may interfere with the MRI.

Your doctor will let you know if you shouldn’t have a cardiac MRI because of a medical device. If so, consider wearing a medical ID bracelet or necklace or carrying a medical alert card that states that you shouldn’t have an MRI.

If you’re pregnant, make sure your doctor knows before you have an MRI. No harmful effects of MRI during pregnancy have been reported; however, more research on the safety of MRI during pregnancy is needed.

Your doctor or technician will tell you whether you need to change into a hospital gown for the test. Don’t bring hearing aids, credit cards, jewelry and watches, eyeglasses, pens, removable dental work, or anything that’s magnetic near the MRI machine.

Tell your doctor if being in a fairly tight or confined space causes you anxiety or fear. If so, your doctor might give you medicine to help you relax. Your doctor may ask you to fast (not eat) for 6 hours before you take this medicine on the day of the test.

What To Expect During Cardiac MRI

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*For some reason, my MRI was scheduled for an hour and a half:

30-minutes blood work & prep, then  1-hour scan*

Cardiac MRI takes place in a hospital or medical imaging facility. A radiologist or other doctor who has special training in medical imaging oversees MRI testing.

Cardiac MRI usually takes 30 to 90 minutes, depending on how many pictures are needed. The test may take less time with some newer MRI machines.

The MRI machine will be located in a special room that prevents radio waves from disrupting the machine. It also prevents the MRI machine’s strong magnetic fields from disrupting other equipment.

Traditional MRI machines look like long, narrow tunnels. Newer MRI machines (called short-bore systems) are shorter, wider, and don’t completely surround you. Some newer machines are open on all sides.

Cardiac MRI is painless and harmless. You’ll lie on your back on a sliding table that goes inside the tunnel-like machine.

The MRI technician will control the machine from the next room. He or she will be able to see you through a glass window and talk to you through a speaker. Tell the technician if you have a hearing problem.

What to Look for in Results?

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(All information taken From the NIH Website.)

But it honestly wasn’t that bad.

In all truth, it was one of the easiest tests I’ve had done, despite the length of time and immobility. Way better than barium swallows or having to eat disgusting, bland food with nuclear isotopes in it, that’s for sure.

Maybe it was that I was super tired from the drive or from being woke up the night before, I dunno, but I didn’t even feel the need to move at all. Plus, I got headphones to listen to the radio station of my choice… Indie Rock it is. I closed my eyes and fell into sleep. The hardest part was staying awake and focused enough to breathe when they told me to breathe a certain way. And zero nausea during injection of the contrast (no “sunburn” or an allergic reaction following either, unlike with iodine, thank god).

I did hold my breath in fear when the machine first turned on, however, but only because I was paranoid about the prospect of having missed some form of metal being left in my body. Luckily, all was good. I just hoped the results would be the same.

My anxiety was gone, realizing I was nervous for nothing – as usual.

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Next on the list: Exercise Stress Test…

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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