Wish You Could See


What it feels like to be undiagnosed:

It happens slowly. First the tiredness and then the symptoms come on – one by one. You go to the doctor, expecting to go home with magic medicine and, soon, you’re going to feel better.

But what if that never happens? What if you never feel better?

Doctor after doctor examine you, trying to make sense of your symptoms.

They don’t have the answer, either.

Run this test or start that medicine.

The tests keep telling you that you are fine; You’re healthy as can be.

But you’re dying on the inside.

Some don’t believe that you’re sick; That it’s just all in your head.

You start to think maybe they are right.

But you keep searching for a cure anyway. Some way to manage your symptoms.

You spend your days learning medicine.

Medicine is no longer a science, it’s an art.

One you haven’t mastered yet.

You pray for a name, a label… Something, Anything

Something to make sense of it all- make sense of the pain inside.

To give you hope that someday it will get better.

Year after year that goes by – and every doctor that you see leaves you feeling even more lost than ever before.

You’re undiagnosed.

Left to be the ghost of who you used to be – and may never be again.


The Problem With Being Undiagnosed?

1) You can’t use your benefits.

At some point, you may become too sick to work. You can apply for disability benefits through work, but more likely than not, they will deny you for lack of proof.

Yes, your symptoms are documented. You’ve been to every doctor in the world. Your list of medications is incredibly long. You have every test and procedure on record. But none of these supply objective proof that you’re sick. Nothing else matters, especially in insurance.

Same thing with Social Security Disability.

2) No one takes you seriously.

Friends, family, doctor’s, employers, etc.

If you don’t have a diagnosis, you must not really be sick. Or it’s in your head. Otherwise, the doctor would have found it….

While it’s wrong, it still happens. It’s also hard to explain the unknown.

3) You have no medical home.

When you’re sick, who do you call? You have so many doctors, which is a catch 22 if you have multiple symptoms. Call your primary care doctor… no, call your GI doctor.. the immunologist needs to handle that…You end up going in circles….

Plus, most of the time doctor’s are so busy and they don’t communicate with one another. So it’s on you to manage your own care. Who needs what notes? Who prescribes what med? Who is handling what paperwork? It’s exhausting.

Let’s not even talk about doctors dismissing you from their practice because “there’s nothing else they can do for you” -or- they believe you’re malingering -or- just want pain medications.

And god help you when you have to find a new doctor.

4) Despite trying different medications, diets, and lifestyle changes, you don’t know what you really have.

You can try to make it better, you do try to make it better, but how do you know what exactly is helping or hurting? Now, I know a diagnosis doesn’t guarantee a cure or that you’ll feel better, but at least you can follow a protocol, read books, talk to others with your exact condition. Being undiagnosed is blind. Treatment is blind as well. You’re just forced to live with it, deal with it.

5) Your condition gets worse because it wasn’t treated or managed in time.

Again, not to say a diagnosis means that your illness won’t progress, but it happens far more often than not with those who can’t find the help they need.

6) There’s no support group for you. No ribbon to wear.

And only a few organization help patients who are undiagnosed.


Luckily, other chronic and invisible illness communities accept us with open arms.

Ghosts of the Undiagnosed.

Because at one point, they too were undiagnosed.


What Can You Do?

  • If you’re undiagnosed:
    • Read, Read, Read. Do as much research as you can. Learn medical terminology and abbreviations. Read medical journals, case studies, or peer reviewed articles. Just avoid WebMD, Wikipedia, and the like when looking for information. There’s also a ton of great books on becoming your own patient advocate, how to navigate the healthcare system, and even some on being undiagnosed. Knowledge is power when it comes to actively protecting your health and care.
    • Be organized! Keep copies of everything, from every doctor. You never know who or what will be important at a later time.
    • Keep a symptom journal, document every pain and every symptom.
    • Take pictures of the visible symptoms, no matter how unimportant and unrelated it seems. It’s a way to document objective proof. And you can show it to your doctors as well.
    • Prepare for your appointments. Write down any questions, any medications, and any symptoms. Stories help to put your symptoms into context, helping your doctor to better understand how your symptoms affect your life, as well as possibly giving insight to what may be causing them.
    • Google Your Doctors. Read reviews, talk to other patients. If you feel like you’re having problems or not getting the proper care, it’s likely others are too. This will tell you whether you may just be sensitive about the issues or if you do need to look for other care. It may just be your condition is truly that rare or hard to diagnose, but it’s good to know if you are in good hands or not.
    • Sign up for clinical trials and research studies. Sometimes you can try new medications or have testing done for free. In clinical trials, they monitor you very closely and maybe it could lead to more answers or pieces to the puzzle. You just never know.
    • Tell your story. By sharing your experiences, you may find others going through the same or similar experiences. To know you’re not alone. It also helps you to get things your chest and helps others to understand.
    • Keep searching. Never give up. You deserve to feel better, to have answers. Even if your condition is rare, if you can get a diagnosis then you’re helping to advance the world of medicine, perhaps even helping others who are also searching for a diagnosis.
  • For everyone else:
    • Spread Awareness! Help us have a voice in the medical community. Help us to get better, join our search, support us.
    • Believe us, and believe in us. No matter the illness or condition, diagnosed or undiagnosed, we fight every day for some sense of normalcy and peace in our lives. We work so hard to continue to have hope and to stay positive. We are lonely, tired, scared, and in pain. However, nothing hurts us more than feeling like we have to prove how sick we are.

Don’t Lose Your Wings Until You Learn How to Sing Yourself to Sleep

Everything feels so bittersweet. I am at a crossroads with finding my diagnosis. I know what NEEDS to get done next, I’m just not sure HOW to get there from my current situation. I’m at a standstill.

I saw my primary care doctor yesterday to get a note back to work. I’m officially running out of money, having not received a paycheck in over two months. I couldn’t prolong it any further. While I love my job, I still feel incredibly awful all the time, I still have testing and doctor’s appointments scheduled every week, and I am coming back without a diagnosis. I’m feeling pretty bruised and defeated about this. Nothing has gone as planned and I’m just left to wonder, How in the hell am I going to do this? 

To be honest, I’m barely getting though my days without work and now I have to find a way to add more into this hellish thing I call my day-to-day life. Trust me when I say that my medical leave was neither relaxing nor helpful in any way, shape, or form.  And all I’m coming back with is more questions, fewer answers, and even more anger than before. I’m handling everything the best I can, but I don’t know how much longer I can hold on to any hope when I keep getting beat down. So let’s add extra stress and worrying about not losing my job due to attendance, finding time for appointments so maybe one day I could feel better, and not sacrificing the amount of health I have left.

So back to my doctor’s appointment. I needed to get a note allowing me back to work, as well as my husband’s FMLA paperwork that needed to be updated so he could continue to take me to appointments. They couldn’t get me in at the clinic closest to my house, so I had to drive 30 minutes away to go to the south location. The weather has been absolutely crazy this week (snow, wind, hail, thunder, lightening, tornadoes, etc) and it ended up taking me just about an hour to get there. I almost didn’t go because I had such bad cramping from the endometrial ablation, and I was just overcome with dizziness and nausea, so much so that I didn’t sleep even a single minute the night before. It was hard to muster up the strength to get into the car and drive there, with tears welling up in my eyes, knowing I had to not only deal with this doctor (who has given up on me and my illness) but had to ask for something that I know my body is not ready for. Just so I can get a paycheck.

The office is surprisingly slow (more than likely because the weather was awful) and the nurse gets me back rather quickly. She take my vitals, and puts me in a room. I hand them the FMLA paperwork, with the previous paperwork so that it doesn’t get messed up, and the note that my therapist wrote advising I start Part Time to adjust back to work, as she doesn’t think it’s safe for me to do 10 hour shifts, especially right away. I agree. The nurses step out of the room and  I wait. And I fall asleep in the chair sitting up because I’m exhausted and in pain. It takes them a full hour to hand copy 3 pages exactly as they had done before. They tell me the doc is just completing my note for work and I’ll be good to go.

The doctor never comes into the room. She’s in her office somewhere. I planned to see if I could ask her about some of the new symptoms, but it’s lunch time at this point.  

  • My occipital lymph nodes keep swelling after I have any testing or procedures. This just started in April.
  • I’m getting a flushing, red rash across my cheeks and nose almost daily now.
  • I had this sudden onset of extreme burning with a red rash on my extremities that seems to come from nowhere. It itches and burns real bad, and it has these tiny broken red blood vessels throughout. 
  • I’ve had ongoing olfactory hallucinations for months, but she hasn’t asked me or seen me to discuss. I keep smelling either dirty, wet sock/feet or electrical fire. It comes on so quickly and hard, I’ve found myself jumping out of bed searching the whole house but no one else can smell it.
  • My at home testing/finding that may explain the cause of each and every one of my symptoms.

The nurses tell me I am ready to check out. I ask the nurses about the lymph nodes, considering they’re hurting harder than when I first arrived at the office, and I’m hoping maybe they’ll get the doctor I can’t see around anywhere. I know she’s somewhere because she signed all the paperwork. They joke that my body does weirdest things, but they really couldn’t tell me why that would happen. One of the other nurses, whose last day was yesterday (which I can’t blame him for that), says he has an idea about what I have based on my symptoms but I’d have to bring that up with my provider. I try to probe more, but he won’t tell me anything more, and I’m not sure if he actually thinks he knows what it could be or if he’s mocking me as if I’m crazy. My PCP then sticks her head out, yells that my lymph node swelling is normal. If they stay swollen longer than six weeks, then come talk to her. She shuts the office door. I give up and leave. I look at the paperwork. She copied word for word what my therapist wrote, only on their letterhead. It doesn’t have any specifics on it, so not sure if work will accept this or not, but I’m not turning around.

I wish I had been more assertive and demanding, but it wouldn’t have done any good. She doesn’t care about how I feel or what’s going on with me. I’ve seen her fire clients before and right now I need her, if for nothing else, my medications.  I still need two referrals, but I can’t get them. I want to report her. I want to fire her. I want to write her a letter about how awful I feel after going there. I want to tell the world to avoid this place. How she can approve me back to work without examining me? I brought copies of the most recent tests and discharge papers from the hospital, they didn’t need them supposedly. It doesn’t matter that I’m bleeding harder and cramping more than the first day of my surgery. It doesn’t matter that the syncope episodes are becoming more frequent. Or that I’m seeing colored light bouncing in my vision often, daily. That I still can’t eat without getting sick, so I won’t be able to eat when I am at work or I’ll be in the bathroom all day, and yet again risk my job. She just doesn’t care. And I suffer because of it. 

I worry about the future. What if I lose my job because you didn’t do yours? What if I can’t go to work? Your lack of proper medical notes will kill any part of getting disability, not that I want to go that way. I just want to feel better. I want my healthcare managed. I want to know that no matter what I have, I’ll be OK. You have killed that for me. More than likely, you are slowly killing me too. I’m angry but I have no idea what else to do. I call doctors everyday, trying to find something better. They won’t see me or can’t see me for months. I need help and you have abandoned me to find my way with the current state of healthcare. And there is NOTHING I can do about it, which is the worst part of all. 

“Cover me in fire
Drop me down to the deepest darkest ocean
So I never have to feel that way again
Color on the carpet seven eyes on the ceiling
There’s a feeling that comes over you

When you know that
Something has changed forever
Don’t lose your wings ’til you learn
How to sing yourself to sleep

I know it seems funny but
Maybe we just said goodbye
I feel strange enough to cry
Strawberry marigold smile

Please don’t bring me down
With that look on your face
Because I almost didn’t make it and one day
You might know how that feels

I heard the mermaids singing once
When I was very small
But now the sound of the traffic and human voices
Wake us ’til we drown

Don’t lose your wings ’til you learn
How to sing yourself to sleep
I know it seems funny but
Maybe we just said goodbye

I feel strange enough to cry
Strawberry marigold smile
Seven angels seven plagues
And the trumpet and the saved

I tell you man if it was me on that beast
I would not let you fuck with me like that
It’s dangerous to see beyond
The visions that we breathe

But I can hold it in my hand and know
That there is something to this that will never die
Don’t lose your wings ’til you learn
How to sing yourself to sleep

I know it seems funny but
Maybe we just said goodbye
I feel strange enough to cry
Strawberry marigold smile

Strawberry marigold smile
Strawberry marigold smile”

The Doctor Is Going To Microwave My Uterus…

I’m serious… only, it’ll be with radio frequency ablation. I’m having the procedure done on Tuesday, in-hospital. Typically, the procedure is a quick in-and-out visit to the doctor’s office or outpatient facility, but with having Malignant Hyperthermia Susceptibility, all procedures being done in an extremely controlled environment. So back to the hospital it is. I have my pre-op with the hospital tomorrow morning and then pre-op again with my doctor on Monday.  Seems like a lot of prep for a procedure that takes about ten minutes to complete, but I’m glad my doctors are being safe and not sorry.  Amidst all the complicated and random symptoms, it didn’t even initially come to mind that something was wrong with my “lady parts”. I just assumed it was due to everything else going awry in my body.

When I went to the new OB/GYN to discuss the relationship of my ongoing bleeding and the Nutcracker Syndrome, we had a long discussion of my symptoms (in general), as well as the abnormal bleeding I’ve had since I was 13. It’s always been painful and debilitating. I remember missing school and practice every month when my period would come on, I’d just get so sick, barely able to move. And it would come and go at random times, or stay for really long times. Sometimes it wouldn’t come at all. I assumed it was from training (for swimming) and practicing twice a day, as well as going to the gym. In my later teens, I would often have cysts on my ovaries and they would be so painful when they would “burst”. Many doctors thought my chronic abdominal pain MUST be related to “girl issues” and “growing up”. 

I eventually went on birth control. The pills made my stomach turn, so I tried Depo-Provera. It worked great for many years. No weight gain, no nausea, and thankfully, no periods. Eventually when my abdominal pain and nausea came back, with panic attacks, I thought maybe it was the Depo. I had heard horror stories from people being on it for too long. Thinking maybe it was hormonal, I decided to get off it in 2008. Plus it was really expensive at the time. But obviously, getting off it didn’t help much.

Fast forward to 2013. My symptoms had come back with a vengeance, after taking a hiatus for a few years. Month after month, my period would get more intense, painful, and unpredictable. I remember the day I walked into my gynecologist’s office, my husband had to leave work and drive me, I was cramped up that I could barely walk on my own. The nausea was so intense, every move I made I felt like I was going to throw up.  I literally thought I would bleed out and die. The doctor gave me the shot on the spot. 

It seemed to work for the few months, only a few drops of breakthrough bleeding in the first few months. I thought, “Great. I can live again.” My abdominal pain kept continuing, but at least it didn’t get worse during my “time of the month.” A few months later, I notice that I’m starting to bleed a few days before my next shot is due. Then a week, then  two weeks, and so on. This is right before my wedding. So I call the doctor. He prescribes 800 mg ibuprofen, twice a day, that should make it stop. It makes my stomach ill, but the bleeding does not stop. He’s confused. Then he gives me birth control pills WITH the Depo, there’s no way I could bleed on both. I do. And again, my stomach is sick. They check for cysts and do a trans-vaginal ultrasound. Some free fluid and minor things noted, but nothing to explain the bleeding or the pain. 

Currently, I’m starting the bleeding cycle about a week after my shot, leaving me miserable for just under three months. And the clots are so large and abnormal, so the doctor wants to take my edometrium lining to stop the bleeding. 90% of patients either no longer have their period or have minimal periods. So I’m hoping this can at least ease SOME of my pain and symptoms. If not, then it’s on to a full hysterectomy. So we’ll see how it goes. Recovery is usually within a few days, as long as there are no complications. I can’t imagine it going to be any worse than what I’ve gone through already.

The hardest part is talking to friends and family about it. Even my GI doc thinks I’m too young for something so permanent. I will not be able to carry a child (although I technically COULD become pregnant), I know that is shocking to many people, but I’m OK with it. How could I even carry a baby to term? I can’t eat or provide nutrients. I’m constantly ill. And even if I could, what kind of mother would I be, lost in the world of invisible, chronic illness. And what if I pass down whatever this is down to them? Everyone can call me selfish and self-absorbed, but how selfish is it to bring a child into a world full of chaos and inadequate care? Knowing I’m sick and more than likely won’t ever get better, based on my history. My doctor thinks it’s best and so do I.

But I can’t lie, I do feel a little guilty. Not so much for the people who want us to have children for their own reasoning, but really, for those who CAN’T have children, which is true for a couple of my friends. How could I not feel guilty? I can only imagine how they feel . I can see the disappointment in their face when they ask about it. I hate disappointing people. It is partly selfish. And it’s permanent. But most people do not live each day suffering through chronic, debilitating symptoms. They have NO IDEA the drastic things you’ll do to your body for a small amount of relief. I literally can’t remember the last day I had  “good” day. I’d give up almost anything for some peace in my body, even it is momentarily. 

Information about my upcoming procedure: Endometrial Ablation.

I’ll post my review after Tuesday. 

“Let it all out
Get it all out
Rip it out remove it
Don’t be alarmed
When the wound begins to bleed

Cause we’re so scared to find out
What this life’s all about
So scared we’re going to lose it
Not knowing all along
That’s exactly what we need

And today I will trust you with the confidence
Of a man who’s never known defeat
But tomorrow, upon hearing what I did
I will stare at you in disbelief
Oh, inconsistent me
Crying out for consistency

And you said I know that this will hurt
But if I don’t break your heart then things will just get worse
If the burden seems too much to bear
The end will justify the pain it took to get us there

And I’ll let it be known
At times I have shown
Signs of all my weakness
But somewhere in me
There is strength

And you promise me
That you believe
In time I will defeat this
Cause somewhere in me
There is strength

And today I will trust you with the confidence
Of a man who’s never known defeat
And I’ll try my best to just forget
That that man isn’t me

[Chorus x2]

Reach out to me
Make my heart brand new
Every beat will be for you
For you

And I know you know
You touched my life
When you touched my heavy heart and made it light”