Guest Feature: Jim’s Story

 

Vascular Compression Syndromes:

A Likely Cause of Chronic Fatigue Syndrome

Written by: Jim, Colorado

One of the most frustrating things I have read since getting diagnosed with May-Thurner Syndrome (MTS) is that if you don’t develop Blood Clots or Deep Vein Thrombosis (DVT) with this condition, you are most likely asymptomatic. Unfortunately, very few doctors are aware of the many symptoms that MTS can cause, especially without blood clots or DVTs. Since my personal experience with May-Thurner Syndrome is vastly different than most stories I’ve read about this condition, I would like to share my story about how I finally got diagnosed with MTS and the many seemingly unknown problems it can cause.

May-Thurner syndrome is an anatomical variant that can lead to vein compression and, in a small percentage of people, blood clots and DVTs. Since I never developed blood clots with this condition, none of my doctors ever thought MTS could be the cause of so many of the problems – most of which I’ve had for the majority of my life, such as debilitating fatigue. After recently getting diagnosed and treated for this condition, here are some of the problems that MTS can cause that are not widely known. Many of my own problems started around age 13, although looking back there were definitely signs of this condition even early than that. Some symptoms that many people first experience when developing blood clots with MTS is anxiety and fatigue. I’ve had anxiety, especially social anxiety, from an early age. I was extremely shy and insecure as a kid. Then, at age 13, I started experiencing extreme fatigue and, shortly afterward, depression. This is when I probably should have begun developing blood clots as commonly associated with this condition, but I’ve learned that most people with MTS never will and many will never even know that they have this condition. From there I would go on to develop chronic fatigue, which would negatively impact my life for the next 25 years.

May-Thurner syndrome is a poorly understood and rarely diagnosed condition. It seems to me that almost everything that is known about MTS is incorrect. For instance, most websites will say that it’s a rare condition that’s commonly diagnosed in women who are between 20 and 40 years old and that it’s not a hereditary condition. However, it’s actually an anatomical variant that is estimated to be found in 20-25% of the population, possibly even much higher. About half of these people could also have at least some compression of the iliac vein and be experiencing symptoms as a result of this condition. MTS occurs when the spine begins pressing down on this very large vein, blocking normal blood flow. It can also occur at almost any age. Since women tend to have a more pronounced lordosis of the spine, they are approximately 4 times more likely than men to receive a diagnosis of MTS. It would also seem that MTS is more than likely hereditary because it can be caused, in part, by the shape of a person’s spine.

After having a stent place for May-Thurner syndrome, I can say that MTS has undoubtedly been the root cause of my anxiety and unexplained chronic fatigue or excessive daytime sleepiness (or whatever you want to call it) that I’ve had for more the past 25 years. I don’t know of many doctors that will tell you that May-Thurner syndrome can cause chronic fatigue but the doctor that diagnosed me knows it can cause this extreme fatigue. My doctor also told me that MTS is a condition that is usually diagnosed in pregnant women due to rapid weight gain that causes the compression of the iliac vein and, sometimes, DVTs. So, for a healthy male with no blood clots, this is probably the last condition most doctors would look for — and that’s the problem that I’ve discovered about this condition. From my experience, I can say that May-Thurner syndrome can absolutely cause chronic fatigue syndrome. So along with anxiety, chronic fatigue, and depression, MTS can also cause cognitive dysfunction as well. I’ve had attention deficit disorder, confusion, and memory problems since early childhood. It’s likely that I was born with, or developed, significant compression of my left iliac vein early on in my life, thus causing many of these symptoms. The problem that MTS is that it can be especially devastating for kids and teenagers who are dealing with these symptoms but are not quite able to fit in with their other “normal” friends, so an inability to excel or succeed at work or school due to poor concentration and fatigue could be an indication of MTS, much like CFS.

When my problems began getting worse last year at the age of 38, I was determined to figure out what was causing the unexplained, extreme fatigue that I’ve had for so long.  My symptoms up until this point could only be described as mild narcolepsy due to the excessive daytime sleepiness and hypnagogic hallucinations with sleep paralysis that I would occasionally experience. As someone with narcolepsy once said, “one of the first places I go to when I get in a car is to sleep” and I could sleep for days when riding in a car! (Incidentally, 13 and 38 are the exact ages people are usually diagnosed with narcolepsy – a diagnosis I was trying to get a year earlier than my MTS diagnosis). I had every sign and symptom of narcolepsy except for cataplexy, although MTS could very well cause this too since it causes weakness in the legs as well. I believe that May-Thurner syndrome could very likely cause sleep associated disorders, including narcolepsy.

After a long and stressful period in my life, my anxiety began to get much worse and I started experiencing brain fog and memory loss. I also began having dizzy spells, sort of like the entire room was spinning, and I was having balance issues as well. For instance, I would be walking along and then suddenly just start leaning to my left side. One day, when I was out walking with my daughter, I ran right into the door of a store we were entering. At the time, it was actually pretty funny – we both had a good laugh about that one. After going to see over a dozen different doctors during the following 6 months, I was not any closer to finding the cause of my fatigue. I had all kinds of tests, include abdominal ultrasounds and magnetic resonance imaging (MRI) of the brain, but the only thing doctors found was that I had left-sided varicocele veins. Apparently, a doctor had mentioned that I had these to my parents around the age of 13. I was having a dull/ache and pain on the left side of my groin at the time, so that made more sense. Still, even after all of this, doctors kept telling me that I was a healthy male and that I had nothing to worry about, even though I felt like I was dying all the time. After a couple of months of feeling miserable, I decided to have a varicocele embolization to see if this would help any of my problems since I read that they could also cause fatigue and low testosterone.

When the interventional radiologist performed the embolization, it turned out to be one of the best/worst decisions I’ve ever made. What I didn’t know at the time, however, was that this procedure redirects blood flow out through the left internal and external iliac veins, causing an increase in blood flow through these veins. My varicocele veins actually started getting worse after this and the brain fog, which was starting to slowly get better, began getting much worse. Breathing also became very difficult and I developed worsening anxiety, including an impending sense of doom for some reason. My hips and legs would hurt when either sitting or standing for any length of time. Both legs felt like they weighed 300lbs each and were very weak. I would just sit around and wonder about how I could keep going, especially with the way things had been going for such a long time. It took me awhile but I finally went back to the doctor that performed my embolization and told him about all the problems I’d been having since then. That’s when he told me that I probably have a condition called May-Thurner Syndrome. After searching MTS and fatigue online, I found a website from a vein clinic that talked about how MTS can cause symptoms like anxiety, fatigue, depression, and exercise intolerance. The website also stated that those with a 70% or more compression of the left iliac vein can cause leg pain and/or swelling, pelvic pain, pain during intercourse (dyspareunia), pelvic pain after intercourse (post-coital pain), lower back pain, and urinary bladder discomfort. This description almost describes nearly all of the symptoms I had been having exactly – I couldn’t believe it! At this point, I knew that I had finally discovered the cause of all the problems that I had been having for all these years.

After a pelvic venogram confirmed that I actually had MTS, with about 70% compression of the left iliac vein, he chose to place a stent in the vein to allow for proper blood to flow through. I wasn’t sure what to expect next, so I left the hospital and went home to relax. That night, I started getting the worst lower back pain and I felt like I was half-paralyzed. I remember thinking to myself that it was just my luck and I had somehow managed to make my problems even worse than they were before the stent placement. During the middle of the night, however, the pain slowly began to disappear and I felt a little more relieved. The only way I can describe how I felt when I woke up the next day is that it felt as if I had been placed in a completely different body – I felt 20-years younger overnight; I was breathing so much better and could finally take a deep breath; the terrible anxiety and brain fog were gone; my legs felt so much lighter that I felt like I was a balloon and I could almost fly away at any time, and the extreme fatigue was also starting to fade as well. Additionally, I had the strangest sensations all over my body as blood was probably flowing normally (through my whole body) for the first time in my life. Every ache and pain in my body were now gone, although it took about 2 months for my sleep patterns to return to normal again. I finally started feeling like my old self – only a lot less fatigued.

It was around this time that I met Nikki (the Undiagnosed Warrior), who had also been diagnosed with May-Thurner syndrome and pelvic congestion syndrome, as well as two other vascular compress syndromes: Nutcracker syndrome (NCS) and superior mesenteric artery syndrome (SMAS). It is also when I first learned about NCS, although I shortly discovered that it was also a known cause of CFS and a very similar condition to MTS. Nikki was the first person I’ve ever been able to talk to that knows about the many problems that MTS can cause for those affected by it. In fact, our running joke with one another is “You know what causes that right?” – “May-Thurner Syndrome!!!” LOL.

My hope in sharing my story is that maybe someday it will help someone else receive a diagnosis, instead of suffering unknowingly with this miserable condition. It’s amazing that it has taken over 25 years for someone to figure out that I most likely had MTS all my life and it shouldn’t be that difficult. I wish one of the many doctors I saw along the way would have known about the many problems and symptoms that May-Thurner Syndrome can cause, especially in those who haven’t develop blood clots as expected. The good news is that doctors have been stenting for MTS for the past 20 years and if you do have this condition, a simple stenting procedure could give you great relief from your symptoms – I know it did for me. [Note: It is imperative that your doctor or surgeon check for other vascular compressions syndromes prior to agreeing to stent placement or pelvic embolization as a treatment because it can have the potential to increase pain and symptoms, rather than relieve them, especially when other vascular compression syndromes are present. Please consult your physician to find out more information]. Thank you for reading my story!


Jim Johns Photo for Article Submission

Contributor Information: Jim is an active member of the Undiagnosed Warrior Team and a moderator of the Undiagnosed Warrior Support Group. He advocates for the Undiagnosed by educating both patients and professionals about vascular compression syndromes, particularly on May-Thurner Syndrome and the random symptoms that the condition can cause.

It’s Alright Not to Feel Okay…

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


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

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

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

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

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

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

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

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

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

I cared, though… I still care.

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

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

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

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suicide

National Suicide Prevention Lifeline Magnet, SVP05-0126

National Suicide Prevention Lifeline Magnet

Please keep fighting fellow warriors!

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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Somewhere you’re not coming back…


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The highs and lows of chronic illness are overwhelming. One minute I am strong and powerful, feeling like I can take on the world. The next, I feel like my world is falling apart all around me. Hour by hour and even day by day, life changes so drastically: I’m tired, I feel good enough, I am violently sick… I’m happy to be alive, I’m sad to live this life, or I’m numb to my feelings. I realized, after the emotional train-wreck that was my day was today, that being sick reminds me of how life was shortly after my mother died… I am stuck and lost within the five stages of grief…


The Five Stages of Grief in Chronic Illness:

1. Denial 

“It’ just a cold, it’s nothing.”

“There’s nothing wrong with me.”

“The doctor’s have no idea what they’re talking about.”

“I’m fine, everything is fine.”

“This can’t be happening to me.”

“It’s not getting worse, I promise.”

2. Anger

“Why me?”

“Life isn’t fair!”

“I hate this!”

“I’m sick and tired of being sick and tired.”

“I don’t want to do this anymore.” 

3. Bargaining

“Maybe if I do better…”

“God, if you make this go away I promise to…”

“If I keep doing good things, maybe my luck will turn around.”

“I promise I’ll try harder…”

“If only I had kept searching for answers…”

“Maybe I can talk to my doctor…”

4. Depression

“What am I going to do with my life?”

“What’s the point?”

“Life isn’t worth living anymore.”

“How am I going to afford to live? Or my medical bills?”

“I can’t do this anymore.”

5. Acceptance

“I can choose to give up or I can choose to fight.”

“My illness doesn’t define me.”

“I choose to keep going, despite my illness.”

“I have a greater purpose.”

“I will raise awareness to my disease.”

And today I felt all of these.

“I can’t believe this happening, not again…”

“I hate being sick. I hate this life. I hate not having answers. I hate the unknown.

I hate, I hate, I hate…”

“I need to talk to the doctor, it’s the only way…”

“I can’t do this anymore…”

“I have no choice BUT to keep moving forward.”

I Will Stay Positive…Maybe.

I grieve for what I have lost due to my illness. And what I won’t have in the future, either.

But mostly, I grieve for the loss of myself.

For all that I was and could have been.

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What My Chronic Illness Has Robbed Me Of:

  • My Dreams:
    • I wanted to do so much with my life. I was set to have a bright future.With all I manage regarding my health, I can only imagine the amazing things I could have accomplished by now. Imagine if I put all my energy into bettering my life, where I’d be?e3feea180cd8f191cdb9030765e8e9bd
    • Instead, I balance:
      •  Doctor’s appointments and medical testing, sometimes every day of the week and multiple appointments in the same day.
      • My Symptoms.
      • Medications.
      • Medical Records.
      • Scheduling and coordination of care.
  • There’s no big house with a white picket fence in my near future. Maybe not ever. Chronic illness is too unpredictable for such a big commitment.
  • Traveling the world.
  • My Career:
    • I’ve always worked hard, been an “above expectations” employee… continuing to learn, grow, and advance in every job, even when I started getting sick. But then it got worse…
    • I’ve had to change my career goals so many times, I feel like I am back in school… What do you want to be when you grow up? I Don’t Know!” ea7374914206b8416b76baac92fa71a2
      • Marine Biology?
        • nope
      • Real Estate?
        • nope
      • Veterinary Medicine?
        • nope
      • Management/Leadership
        • nope
      • Insurance
        • Health? -nope
        • Property & Casualty? -not sure anymore?
    • What’s next?
      • Veterinary Forensics?
      • Forensic Psychology?
      • Health Psychology?
    • My current job seems like they’re finally fed up with me. I can’t do disability because I can’t PROVE how sick I am.
  • My Ability To Do The Things I Love:
    • I had to quit competitive swimming.
      • and competitive cheerleading.
      • and roller derby.
      • and dance.
      • and surfing (when I was in FL).
    • I can no longer go on hikes or go camping.
    • Go to concerts and shows.
    • Set design/horror make-up/act in haunted houses and productions.
    • Go on long drives, exploring new places.
    • Traveling.
    • Volunteer with animal rescue groups.
    • Ghost hunting (don’t judge me…)

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  • My Appearance:
    • My hair keeps falling out.
    • I’m not “toned” because I can’t exercise like I used to.
    • Despite that I hardly eat, I often gain weight quickly. Then I lose it. Then I have stretch marks from the constant changing in my body.
    • My body is plagued with rashes and sores.
    • I can’t wear makeup most days because of how sensitive my skin has become.
    • I’ve lost pigment on my back, which is now also starting to happen on my chest, stomach, and arms.
    • I have giant, dark bags under my eyes… always….
    • Mostly, my confidence. And my smile.
Nevus Anemicus

Nevus Anemicus

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New rash after sun exposure

New rash after sun exposure

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Alopecia Areata

Alopecia Areata

Loss of Pigmentation on neck

Loss of Pigmentation on neck

My Relationships with Others:

  • My husband.
  • My family members.
  • My friends.
  • Some days, I feel like I can’t even relate to most people anymore.
    • I feel awkward and different.
    • I feel jealousy.
    • I feel disappointment. 

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  • My Faith:
    • in the health care system.
    • in people.
    • in medicine.
    • in myself.
    • in God.

I grieve often for all the loss in myself.

For what once was or could be.

It’s too easy to remember all the things that are gone.

That illness has taken away from us.

I wish I had appreciated and loved myself more.

That I had done more, lived more.

So many regrets….

But…

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What My Chronic Illness Has Given Me:

  • Strength and the ability to keep going, no matter how frustrated I get.
  • A great deal of medical knowledge I would have never gotten otherwise.
  • The ability to understand what it’s like to hurt, whether mentally, physically, or emotionally.
  • To feel and understand the struggle of others. AND the WANT to know other people’s struggles.
  • To draw awareness to the undiagnosed, the chronically ill, the invisible…
  • A drive to never stop searching for answers. In every area of my life.
  • Patience. Maybe not so much in wanting a diagnosis, but in everyday life. Like doctors offices.
  • Appreciation of those who stuck around and took the time to understand what it’s like to be sick.
  • The understanding that I can’t control everything, including my own life.
  • That knowledge that change, no matter how hard, can lead to good things.
  •  Love by so many people.
  • Friendship and understanding from other’s also going through a similar journey.
  • The ability to cry, smile, scream, laugh, and sigh… all within one conversation. Or blog post.

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But the biggest thing I learned is that there are so many ups and downs in chronic illness.

And if I hate how things are today, tomorrow is always a new day.

My future is not set in stone, and although I can’t make plans, 

I still have the option to live this life how I choose.

Hopefully find a diagnosis.

And make a difference in this life.

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Tonight I cry, but maybe there will be peace tomorrow.

Pick it up, Pick it all up, Start all over again…



It finally happened. I didn’t mean to let it out, I just finally broke. I’m not proud of my behavior by any means, but there just comes a point when life beats you down over and over, with big things and little things, until it take one thing to just make everything you’ve worked so hard for to feel like it’s all tumbling down around you. 

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It started with hardly any sleep this week. I was behind in school and trying to catch up before midterms next week. I stayed up too late, too many nights in a row. Still trying to get back into work is exhausting all on its own. I worked on Monday and Tuesday, then therapy on Tuesday, testing at the hospital Wednesday and Thursday, meeting with my lawyer on my appeal Thursday as well (which I attempted to finish on Sunday, but finally gave in when 8 hours later I was in tears and nowhere close to being done), and back to work today, starting the cycle all over again. So much to do, still no time, and still feeling so awful. 

Testing was stressful and uncomfortable, and yet again, I don’t think my tests will show anything, but I can’t confirm that for sure until the doctor reviews all the imaging. Woke up again this morning with a radiation burn across my nose and cheeks. For some reason, after the last four or five tests that involved radiation or nuclear medicine, I wake up the following day with this “rash”. It burns so bad. I can’t put lotion on it, or it becomes greasy and bubbles up some. So I couldn’t wear any makeup to work or to the doctor today. I looked awful, hell I felt awful. But I had to go and do everything I had planned. Second day in a row that someone commented on how awful, sick, and tired I look. Thank you, I’m well aware of how crappy I look today. This is how I feel everyday, I just do my best to hide it to make YOU more comfortable. 

After work, rushed down to try yet another Primary Care Doctor. And yet again, disappointment. The nurse was awful, and while not outright mean or anything, she was not very bright. Couldn’t spell my meds, but again refused to read off my medication and history list. And when she couldn’t find it in the computer system, she admittedly said she wasn’t going to input it to my record. Um, ok. Then the doctor comes in. She doesn’t listen to a word I say, dismisses all my concerns, I have to constantly repeat myself about what doctors and treatment I am currently receiving. I tell her I just want a doctor who can continue my care after my specialists make recommendations or find something with my testing. She looks through a couple pages of my records, tells me it could be depression on multiple occasions. She also tells me I have orthostatic hypertension (which I KNOW, but no doctor will note it), but then proceeds to say that all I need to feel better is to drink more water. The cause of me being sick is that in dehydrated, which is not true at all. All i can do is drink. Also, she has no idea why I would get radiation burns after testing. My lymph nodes are very swollen, but she has no idea why, but she’s certain it can’t possibly be cancer. She wants to run more general blood work, I hand recent copies. So she only wants to run a thyroid check, which they checked at least 15 times in the last five years and all have been normal. My husband came with me, he’s not happy either. She says I should go to a GI doctor… again, I explain I’m currently seeing a GI specialist. She wants me to tell them to run this test or that test. Already had them. She doesn’t listen. She wants to know what my diagnosis is then. I don’t have one, I’m still testing, blah blah blah. She says to schedule in a month or two after I see my GI doc, recommends therapy again, and to come back when I can to run my thyroid test real quick, no appointment necessary. No thanks, I’ll pass. I’ll save you the trouble, it’s normal. She wonder’s why I’m not “skinny” from not eating… Well obviously if I knew, it may explain some of my symptoms, don’t ya think? I’ll just drink more water and take anti-depressants I guess, and then I won’t need you lady. Isn’t that what you said?

So back to square one, AGAIN. I’m frustrated, but this feeling has become oh so normal at this point. I contemplate giving it all up. Whats the point? Even if the specialists find something, I have no one to complete my care as a primary. I go upstairs to study. Hours later and I’m still not done reading the last half of this chapter. The dogs keep barking, because my roommate and husband keep coming in and out, and then their friend’s show up. The house is a mess because I haven’t had time to clean, laundry’s not put away… it’s all building inside, I can feel it. I’ve been feeling it slowly coming up for months now. One by one. Day by day. I lose feeling in my hands, which also has not been addressed or noted in my records. My hand is currently purple from the livedo reticularis. I drop my coffee, all over my brand new textbook, which I need to study from and cost over a hundred dollars as I bought it brand new. It’s all over my notes I just spent hours and weeks working on, and it’s splashed on to my computer, which luckily wasn’t worse. I’m not proud of this, but dropping my coffee was the straw that officially broke the camels back. 

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I work so hard each and every day to maintain normalcy, all while spending all my days off in the hospital or doctor’s office. I sacrifice sleep and rest to barely keep up in school and work. Everything else is left in the wind because I can’t possibly do another thing. I am in pain. I can’t eat. My joints hurt. I lose feeling. I faint. I smell things that aren’t there. My lymph nodes are so swollen they hurt to lay my head down. My hair keeps falling out. My stomach hurts. I always fighting the urge to vomit. My body is sore and tired. I feel like I am going to die. And if no one will help me, then I am pretty sure I will. I’ve never been depressed, I’ve always tried keep going. 

But after all this today, and ruining my book and my notes, I screamed. And then I cried. Hard. So hard, in fact, that I couldn’t breath and hyperventilated. And I threw my book. I just sobbed and sobbed, until I couldn’t stand any longer. Then I cried on the floor. Everyone in the house comes upstairs to see what happened, I probably sounded like I was dying. And here I am crying and yelling on the floor, not my proudest moment. But I felt everything tumbling down, everything I kill myself for each day falling apart. I feel like a failure. I feel like there’s nothing to keep me going anymore. I don’t want to keep pushing. I don’t want this life. It’s not making me stronger. Today it make me feel the lowest I have ever felt. It made me want to quit life. I can’t remember the last time I smiled and it wasn’t fake. I can’t remember a time my mind was at peace, and I wasn’t scared, or worried, or anxious, or sick, or tired. My friend cleaned up my books for me, let me yell and scream and get it all out. Everyone is always telling me to stay positive, don’t be so negative, don’t this, don’t that…. or do this, do that. I’m so alone in this journey in my day to day life. I have tons of people who support my journey, but no one who feels it day to day. Even the ones who do see me everyday don’t truly GET it. And it’s not their fault. It’s not that I want them to feel the pain I feel. It’s just lonely. 

When is it time to give up on searching for a diagnosis?

Maybe I am just crazy?

Maybe it’s not worth it?

But I can’t live like this either!

I’m tired of no one believing me, or ignoring me.

I do one good act every day, trying to get good karma.

Just so maybe someday I’ll have a good day. Or good Luck.

It never works. It’s not fair. 

I pray one good day. One day of relief. Or death.

I can’t be this sad, pathetic, sick.

I can’t keep trying to be a superhero, hiding my weakness.

I don’t want to fail at this life. I can’t afford to fail.

No one wants to hear about this side. It’s not inspirational, and I apologize.

I want to be that girl, maybe I will be soon again.

But tonight, I’m broken.

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