Yep, I had to incorporate
Harry Potter into the title.
I am finally ready to write about what has been going on with me (and is still going on).
I've been keeping it secret and playing this one close to the chest,
but part of getting better is being honest, with yourself and the world,
so here goes.
MARE THE MEDICAL MYSTERY: A TRUE STORY
(and to help you kind of enjoy a not-so-fun story, I've included animations! If they're not moving, glide your mouse over them... think of this post as a brief autobiography with pictures!)
As my frequent blog readers and friends know, I've had a variety of health problems.
And they have compounded in the last year, and things have gotten so rough that I have been taking some time off for me, and haven't worked in a few months.
I've seen a multitude of doctors and after the frustration of misdiagnoses and being a "medical mystery" for so long, I finally got an answer.
And boy, was it a shock.
So here is my story, complete with silly illustrations.
The Symptoms
I was exhausted. All. The. Time.
To the point that it was difficult to function.
I was drinking those 5 Hour Energys that work wonderfully but are so awful for you.
I was popping B vitamins like candy and dozing off at random moments during the day.
And yet..
I couldn't sleep.
I would lie in bed, my heart racing sometimes, and for apparently no reason.
I couldn't shut down my mind and sleep (without chemical help) and once I fell asleep I would constantly wake up with a start, not knowing what was wrong (you know, that sensation when you sit up in bed and think "maybe there is someone in the house?? Why did I wake up terrified?!").
And once I finally woke up in the mornings I wanted to lie in bed for hours.
Which would leave me feeling even more tired.
And I had horrible, awful nightmares. The kind that are so realistic you know that they've really happened to you, somehow. Maybe in another life. And I had dreams within dreams, where I would wake up from one nightmare and be in bed going "holy crap that was scary" and then realize that my face was missing, or someone would walk into the bedroom and stab me, or a bomb would go off outside the window. And I would realize I was still dreaming and wake up for real.
Or sometimes I would wake up and be paralyzed with fear--the way you are with night terrors. Completely aware, and unable to move. Pretty much the worst feeling ever.
And it went hand in hand with the other worst feeling ever: Nausea.
The kind that makes you unable to walk upright.
I would literally crawl around the apartment, or run to the toilet all hunched over. But I never really threw up, I just felt incredibly, light-headedly nauseated. I couldn't eat because of it.
So when it went away, I would stuff my face, seizing the opportunity to eat.
My stomach hurt all of the time. It always felt uneasy, cramping, aching.
It was like having butterflies living in there 24/7, which I suppose was tied to all of the anxiety.
It was bad.
I had tremors.
I was always cold, yet sweating nonstop.
always aching.
My whole body literally hurt.
My muscles were so stiff that sometimes they felt numb, and my circulation was a joke.
I was pale and dizzy and noticed that my hair was starting to FALL OUT in places.
I just felt weak.
And then, the heart pains.
These really scared the shit out of me.
My chest would feel tight at random times, and I had minor panic attacks where I literally felt like I was having a heart attack.
It was difficult to breathe. We later learned I get palpitations.
And I noticed I was jumpy, and having angry outbursts,
which I attributed to feeling like hell and not knowing why.
Visiting a dozen doctors and getting a different (wrong) disgnosis every time, and being told you are a "medical mystery" gets old pretty damn quick.
And throw in some occasional mood swings, and I was one wicked medical mystery.
The longer it went on, the sicker I got, I felt pretty down about it.
I became sad and disconnected and felt like I was in the same boat as angsty high schoolers, or Harry Potter in Book 5 (SO annoying!).
I had about 2 pints of blood drawn and tests run.
I got all kinds of answers:
A possible tumor on my pituitary gland, adrenal dysfunction,
hypothyroidism, Hashimoto's Disease, anemia,
parasites, mono, et cetera. I was even tested for HIV.
That was a barrel of laughs.
But...nothing.
No clear answer.
And then finally, I went to see a new doctor, an internist.
I had never seen an internist before and needed a new general doctor, so I went in.
Afternoon at the Hospital
And they function differently than any other doctor I've seen-- the hospital I go to is a teaching hospital., all
Grey's Anatomy style (but without the sexiness and humor.
Don't go to a teaching hospital and expect them to be gorgeous and sarcastic and witty. They don't like it).
So you go in, bring all of your medications with you, and go over them with a pharmacist.
I literally at this point had a SACK of medications I had to bring in.
Then they bring in an intern who examines you and talks to you for about an hour. They usually address your "top 3 health issues" with you in each visit.
Then they come up with their own diagnosis and discuss it with their attending. Then the intern and attending come in and talk to you for as long as it takes for you to feel comfortable with the diagnosis and solution. It takes a while, but boy is it worth it.
Well, the first time I went, the intern asked me some very interesting personal questions about my past, and my childhood cancer. She could tell I was trying to avoid talking about it, and brought in a psychologist that they happened to have on their floor that day.
She had a theory she wanted to check out.
They hooked me up to a heart monitor and then the psychologist asked me a lot of in-depth questions about myself, my health, my childhood, the cancer. And they noticed that when they brought up certain aspects of the cancer, my heart palpitated.
After more talking, and some crying on my part, we had a diagnosis:
PTSD.
So here it is, my big moment, what I've been unable to share for more than 2 months now:
I have Post-Traumatic-Stress-Disorder.
When the doctors told me that, this was my response:
And they told me the different symptoms of it and the fact that I have had it for so many years and suppressed it is what caused my body to manifest it physically.
After I went into remission, my family and I moved on. Rapidly.
We didn't discuss the cancer, and whenever we referred to it, it was "when I was sick." You would rarely even hear the word "cancer" in our house.
The doctors think that this caused me to teach myself subconsciously to tuck inconvenient and upsetting emotions way down deep and ignore them. Which is NOT GOOD.
And they think the fact that I was having work done in and around my jaw/mouth this last year, with my bone marrow graft and teeth implants, is what triggered a big PTSD meltdown in my mind and body.
And it explains everything---why I haaaaate going to the hospital, or even the dentist. I literally have panic attacks when I go to the dentist. I usually take a Xanax because I can't go in cold.
In May, when Vicky was visiting, I had to go to an emergency dental appointment because I was in severe pain and when she saw the way I responded--freaking out on the drive there, shaking in the waiting room--she even held my hand while I sat in the dental chair--she was like "this is
not normal."
But I just thought I had a sever aversion to the dentist.
I get heart palpitations just going in for cleanings!
Taking the Long Route
And it explains why certain smells set me off.
I have smelled something that reminds me of the hospital, and retched. It affects me that strongly, which makes sense, considering scent is the strongest memory-evoker.
I could be walking along, in a wonderful mood, and catch a whiff of something in the air and just lose it, like this silly baby here.
This happened when I was at college; they put in a new science building and it put off some kind of steam that smells like chemotherapy.
It was GOD AWFUL.
After walking past it a few times, and throwing up right after, I made the connection.
And it was right in my path, somewhere I had to walk every day, and I went round the longer, inconvenient way, just to avoid it. If I was in a rush I would hold my breath for 2 minutes and book it.
Self-Therapy: Let the Healing Begin
Anyway, I just couldn't believe that my severe illness was caused by PTSD. It is simply incredible.
So I came up with a "healing plan" with my doctors that is centered around self-therapy (the idea that I know what is best for myself and am the only one that can truly make myself better).
My plan of attack includes writing about it, meditating, and revisiting the trauma.
And it is going well.
Which is not to say that it is easy.
In fact, it sucks. It is difficult and painful and only recently have I been able to sit down and do what I need to do, rather than finding any possible distraction (including deep cleaning the kitchen. Yech).
Some days I feel like.
"Shit....whatever."
Or I think that I could do better, and if I were smarter/happier/more focused I wouldn't have PTSD.
And other days, I feel like I'm getting nowhere, like I'm backsliding and I'm a big fat failure.
On those days, I need a swift kick in the butt from my husband, my dad bringing it up to me instead of letting me ignore it, or a raw pep talk from my best friend (all have been happy to oblige).
But on the whole, I've been so much better.
My energy is coming back and I can get out of bed in the mornings and I'm sleeping at night.
I'm having fewer nightmares, less anxiety, don't have that lingering sense of impending doom, and best of all..the nausea is gone! I still get occasional waves of it, and still get that gripping chest pain sometimes, but I am really getting somewhere.
I am truly learning how to treat myself right, which includes taking out the trash in your life (ditching toxic relationships, habits, and donating those old clothes in the back of the closet).
I am blessed to have a husband that is willing to work his ass off so I don't have to worry about working right now, just focus on getting better.
And I am unspeakably grateful to know what is "wrong" with me, though there is nothing "wrong" or "bad" about PTSD.
I am not totally better, and am still trying to get some answers on other health problems,
but this is the big one.
This is what I haven't been talking about and have been struggling with.
And boy, it feels good to finally put it out there and not care what people think, just know that I'm strong enough to say "Yep, I've got the Post-Traumas, baby!" and accept it and hope by sharing I can help someone else on their journey. Yes, it is giving me chest pains and anxiety, but I'm stepping up to the plate and publishing this, and will continue to write posts about it.
And after I publish this post, I'm going to go pour myself a glass of champagne, sit on the couch, and just breathe.
Let me conclude with a cheesy but true quote:
"The best way to get rid of the pain is to feel the pain.
And when you feel the pain and go beyond it,
you'll see there's a very intense love
that is wanting to awaken itself."
-Deepak Chopra
But for now,
I can't sleep in this thing! It is a major operation to roll myself over, I get stuck to the mattress, and my hair keeps getting stuck in the tape. I tried lying on my stomach, and that was as close as I got to actually relaxing.
