Sometimes It All Get’s A Little Too Much

“Sometimes it all gets a little too much,
But you gotta realize that soon the fog will clear up,
And you don’t have to be afraid because we’re all the same,
And we know that sometimes it all gets a little too much.

She would always tell herself she could do this
She would use no help it would be just fine
But when it got hard she would lose her focus
So take my hand and we’ll be alright

And she knew that she would be okay,
So she didn’t let it get in her way.”

(A Little Too Much – Shawn Mendez)

I’ve been extremely behind on updates and I’m really sorry that I’ve been neglecting this page for the last 6 months or so. Life has been, well, extremely hectic. I’ve been really sick with new and increasing symptoms, and I’ve been learning how to manage a number of new diagnoses, new treatment plans, and new specialists. Not to mention school, family, pets, disability cases, social media pages, and of course, the Undiagnosed Warriors Support Group that launched last summer and continues to grow in numbers day by day. While this all of this has been pretty exciting, I have to admit that I completely and utterly exhausted. With an ongoing, steady decline in my cognitive functioning and a ridiculous amount of writing assignments and research papers to do school, my motivation to write anything has been minimal, to say the least. However, I haven’t forgotten about this blog and the chronic illness community – in fact, it’s on my mind almost all the time. Luckily, there is light at the end of the tunnel and there is so much that I want to share with you all. I honestly can’t wait to get back to writing again and on a regular basis. I just wanted to let you know how much I appreciate every single one of my readers and I want to thank you for hanging in there with me. Everyone has been so patient with me as I try to get both my health and my life back in order, and I can’t tell you how much I appreciate it. In the meantime, please follow along with my social media pages because they are far easier to keep updated with all kinds of really good content, including research articles, infographics, chronic illness awareness items, inspirational quotes, and various tips/tricks for living well with an invisible, undiagnosed, or chronic condition.

Undiagnosed Warrior Facebook Page: 

www.facebook.com/UndiagnosedWarrior

Undiagnosed Warriors Support Group:  https://www.facebook.com/groups/UndiagnosedWarriors/

Undiagnosed Warrior Instagram:

https://www.instagram.com/undiagnosedwarrior/

Undiagnosed Warrior Pinterest:

https://www.pinterest.com/UNDIAGWARRIOR/

 

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…

Medical Testing Update Part 2.5: New Symptoms

Continuation from Medical Testing Updates Part 1 and Part .


The weekend before my next round of cardiac testing started off pretty average, at least as far as my symptoms anyway. Having just recently recovered from the peculiar reaction I had to the one dose of the new beta blocker the cardiologist prescribed (before I was taken off of it when additional cardiac testing was ordered), I was relieved to have a so-called “break”. While I’ve learned to manage life with my usual, everyday  symptoms, the real struggle happens when these symptoms either  intensify or another one jumps in the mix, making everything that much more complicated and impossible. I kept myself busy through that Sunday afternoon, trying to catch up on everything that had fallen behind and allowing myself to forget about the news from the week before. Perhaps it was all of the stress I was under, I dunno, but that night things everything began to take a turn for the worse.

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Given, I had been pushing both my mind and body past the limit by adding more and more things to my to-do list. Honestly, it was way more than I was capable of handling all on my own. Half of this was my own fault for saying yes to too many things, but the other half involved stuff that was dumped in my lap last minute and they were things that I had no choice but to fit into my schedule.  Either way, there was no time for any type of rest or recovery and I knew it wouldn’t be long until my body would decide to revolt against me for treating it so badly the last few weeks. Sure enough, I didn’t have to wait that long.

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Exhausted, I climbed into my brand new bed and was so excited that I’d finally be able to get a good night’s sleep before my cardiac MRI the following morning. It must have been about 3 a.m. when I was awoken suddenly by a pain in my chest. It wasn’t a sharp pain really. More of a dull, yet stabbing, kind of pain and I noticed that I was a little wheezy and that my nose was also starting to get stuffy. Am I getting a cold? Just what I need right now, with all I have going on. Hopefully, it is just allergies, I think to myself, and  I climbed out bed to find  some medicine so that I can go back to sleep. I take some additional allergy meds, aside from my daily dose, and hope that it’ll do the trick.

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I attempt to go back to sleep, but it was very short-lived. Just as suddenly as the ” cold-like” symptoms came on, next was the onset of extreme abdominal pain, generating from both my right and left side, and gradually moving into the small of my back. Usually, the abdominal pain is focused to my left side, although occasionally I feel it either just above my belly button or lower in my pelvis, just depending on the cause that day. The amount of pain with this, though, was unreal and I have a high tolerance for stomach pain.Shortly after the abdominal and back pain set in, both the muscles and joints in my hands, arms, legs, and feet began to swell  slightly, but they instantly became very  stiff, making it nearly impossible to find a comfortable way to lay down. Still, while the way that everything set in was slightly atypical for an incoming flare-up, it was nothing I hadn’t experienced before and I just assumed I had done too much. In fact, I was actually kind of grateful that it wasn’t a cold or virus coming on.

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At some point during the night, I must have fallen back asleep. My alarm woke me a few hours later and I was actually surprised that I didn’t feel worse than I did. Most of the symptoms from the night before (well, really a few hours before) had gone away, which again, I was grateful for as the ride to the hospital is about an hour and a half away. Not to mention that the MRI itself was supposed take anywhere from an hour and a half to two hours on its own, plus the drive time back. The unfortunate part of seeing doctors in a bigger city, it makes for a really long day.

Anyways, my husband and I get in the car and start the long trek to the main hospital. About 20 minutes into the drive, more random symptoms. All of a sudden, it felt like morning medications were coming back up and becoming lodged in my chest and throat. The nausea increased so hard and so fast, it took everything I had not to throw up in the car. I was plagued by a strong, metallic taste and my muscle began to burn. And not just burn, they felt like they were on fire.

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Yet, despite all these symptoms and how uncomfortable the car ride had become, I still wasn’t overly concerned.  I was just happy at the fact that I was having active symptoms during the time a test was going to be performed, hoping it would increase the chances for additional findings.

Sadly, this is what it has come to these days –

I’ve resorted to praying for illness and pain,

just so I can get some answers.

By the time I finish the MRI, symptoms are gone. Once we got home,  I decided to take a nap since I didn’t get much sleep the night before and, yet again, I awaken to -you guessed it- the same thing. If it wasn’t so painful, I would have been extremely angry and irritated but this time around, it was hard to convince me that I was truly burning from the inside out.

The only way I can describe this sort of pain I’m experiencing is by relating it to how it must feel just moments before you spontaneously combust.

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I’m in tears with how bad it burns. My skin is literally hot to the touch, unlike earlier in the day, and starting to change color. It looks like I have been out in the sun all day tanning, even though I obviously had not. There’s no bumps, no itchiness, no rash. Just burning. And it’s coming from INSIDE of my body –  just under the skin, almost on top of the muscles. No lotion or medication can relieve it, not even the arsenal I keep in my medicine cabinet.

Maybe I didn't roll enough...

Perhaps I didn’t roll long enough. 

And not only is the burning constant and consistent throughout 75% of my body, it  continues on for hours and hours on end, lasting approximately 9 hours before it was all said and done.

As if that wasn’t enough, other symptoms begin appearing as well during this “outbreak”. My heart starts racing, making my body feel like it  is running a silent marathon inside. Next I start trembling and shaking, only making me more dizzy and nauseous, before initiating more traditional feelings of pain to the right side of my face, including the throat and jaw. When the pain moved across my chest and down my left arm, I really got scared.

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Oh my god- I’m having a heart attack.

At least that’s what I thought anyway.  In all reality, though, I really wasn’t.  

But you can see how I’d think that given the most recent test results and the amount of stress I have put myself under lately.  I guess this was a friendly reminder that I need to make rest a bigger priority. Besides, have you ever looked up the common warning signs of a heart attack in women?
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I pretty much live with these symptoms every day.

How would I ever know if I was truly having a heart attack?

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Still, I have no idea what this was or the cause of it.Thankfully, the cycle stopped after just three days of on and off random symptoms, but I haven’t experienced any since. *Knocks on wood* 

Perhaps something was caught on my MRI. I guess I’ll ask about it at my follow-up appointment with cardiology if it comes back again.

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To be continued…

Welcome to the new age, to the new age…

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


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

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

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

Okay, go on.

He asks how I’ve felt lately.

“Terrible.”

“Remind me of your symptoms again?”

*sigh*

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

I’m nauseous constantly.  

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

I have diarrhea and/or constipation that is limiting.

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

Dizzy, heart palpitations, spinning, and chest pain.

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

I have livedo reticularis. 

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

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

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

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

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

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

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

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

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

“Oh…”

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

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

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

“I think whatever you have is systemic.”

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

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

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

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

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

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

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

So let me get this straight…

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

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

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

Everyone in the Nutcracker Syndrome Group?

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

The May-Thurner Syndrome Group as well?

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

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

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

What a crock of sh*t!

{Excuse my language.}

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

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

GARD Superior Mesenteric Artery Syndrome

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

Wilkie’s Syndrome

Wilkie’s syndrome causing persistent vomiting

Patient with Both Wilkie syndrome and nutcracker syndrome

Nutcracker Phenomenon and Nutcracker Syndrome

Case Report: Nutcracker syndrome: A rare anatomic variant

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

May-Thurner Syndrome

The list goes on and on…

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

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

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

She asks me, “what’s next?”

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

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

“How do you feel about that?”

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

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

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

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

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

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

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

Thankfully, Monday is the start of a new week.

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

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Just stand still, look pretty.

But you don’t look sick…

My illness is only invisible because I decide what you can and can’t see.

Much of living with chronic illness is hidden from the outside world,

in an attempt to be as normal as physically possible.

So unless you live it yourself, you’re blind to it.

But nothing is truly invisible if you make a conscious choice to really open your eyes.

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So what does invisible illness really look like then?

Allow me to show it you.


You can see invisible illness in the things I do each and every day.

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Visible in the adjustments I make just to do everyday things.

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You can see it on the pages of my planner in which I write every appointment and daily to-do list.

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Or in my notebook that I take everywhere with me.

Otherwise, I will forget everything.

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Or the time I spend doing medical research,

hoping to find an answer for what the doctors can not find.

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You see it in the amount of caffeine I drink, just to stay awake.

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In how long it takes me to do the housework and laundry.

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Or how hard it is just to run simple errands.

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You can see it sitting on my bookshelf.

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In number of times I wash my hands in a day.

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Or the fact that a good portion of my time is spent hidden away in a bathroom.

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Illness doesn’t leave room for hobbies, much less the things that are fun.

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Invisible illness is seen in the never-ending doctor’s appointments and medical testing.

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Or the procedures I’ve had, despite knowing whether they will work or not.

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You see it in all the blood draws the doctors run regularly, trying to get a diagnosis.

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And the therapy appointments I attend just make sure I am not crazy.

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You see invisible illness in all the paperwork I have to complete and keep track of.

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In the two three inch binders that hold my medical records

which I need to bring to every doctor’s appointment.

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-one for clinic notes, one for labs/testing-

You see it in the summaries I put together to keep all my doctors on the same page.

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Or in the advanced directives, living wills, and Do Not Resuscitate orders.

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My illness is clearly visible in the medications I take  every day.

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You can see it in my oxygen concentrator and tank that help me to breath.

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In the duo-nebulizer that I keep at home

just in case an attack comes on and I can’t get to the clinic in time.

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 In my monitoring tools -in my blood pressure cuff and oximeter.

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In my heating pad and humidifier.

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My invisible illness is hidden deep inside my travel case,

full of emergency medications and supplies for when I leave the house.

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And in the lessons my husband has had to take to administer medication

or help me in case I can’t help myself.

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You see my invisible illness in the symptoms I try to conceal and hide.

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Just because it’s not easy to see, doesn’t mean it’s not there.

Do I look sick enough now?

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Because this is how I look at home, behind closed doors.

In real life, invisible illness is not so invisible afterall.

Remember that the next time you judge someone,

when you don’t believe they are as sick as they make out to be,

when you make them prove how sick they truly are,

or say “but you don’t look sick…”

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