Medical Update. booooooo *hiss* yaaaaaaaaaaaaay.

So, I had an appointment with the nurse practitioner at the gastroenterology clinic recently. the morning that Molly got assaulted.    She had previously ordered some blood work...regular stuff...metabolic profile, complete blood count, lipid profile, and a vitamin d test.

White blood cell counts were below normal.  They generally are and have been for a few years.  It kinda concerns me since my T-cell counts were so high, but none of the tests I had done less than a year ago turned up anything.  So I won't worry too much about it.

Vitamin D though?  Yeah, Gone like N*Sync.

I was all crunk that I had gotten down to only a few pills a day.  Now, I'm back on my probiotics, taking at least 1200mg of Calcium a day, and taking 50,000 IU of vitamin D a week for 12 weeks.   Oh well, I'll never complain about being proactive with my health...well, I will, but I won't really mean it.

I also asked why the manometry was scheduled after my CT scan.  The notes mentioned a distended esophagus.  *cries*  This coupled with the notes from my last barium xray about my LES spasming causing delayed emptying of contents from my esophagus into my stomach really really really makes me uncomfortable.   My diagnosis is still non-specific esophageal motility disorder or esophageal dyskinesia...meaning I don't yet fit into any of the known primary motility disorder categories such diffuse esophageal spasm, nutcracker esophagus,  or achalasia nor do I have condition that is causing esophageal problems.    


I'm okay as long as I know that I don't have to suffer in pain because my condition doesn't have a name and because I don't fit into some neat disease box.   


Having a medical team that truly supports you and wants you to get better is the best feeling in the world.  

I'm not very good at this blogging thing apparently...

Sorry.

My mystery illness whipped my ass last week.   I just started feeling up to doing anything other than sitting on the sofa.   Sooooooooo....let's get to it....

Let's start with my mystery illness....once believed to be Sjogren's Syndrome and even CREST syndrome, but now apparently all in my head.    I for sure have dryness issues that have at one point been blamed on everything, but they have persisted regardless of medication and amount of water intake.   Red, gritty eyes.  Dry, bleeding mouth.   Cracked, bleeding lips.  Cracked, bleeding hands and cuticles.   (Let's not even begin with dryness in other places *cough*.)  Sexy, huh?

Now, let's move along to the sun sensitivity...How awesome is it to be able to go into the sun for a minimal amount of time...maybe like 30s walking from a vehicle to a car...and end up with a bright pink rash that itches like hell?   That is pretty damn awesome huh?  No?

Well, what about the joint and muscle pain?   Still not cool?

What about extreme fatigue that makes even showering a task?   Still not convinced of the greatness?

I know this one should lure you in....esophageal spasms and dysphagia!!!!!!!!!!!!   YAY!!!!!!!!!!!!!   Everybody wants that, right?   You want to

 choke on water, bread, chicken, and anything imaginable, correct?   You want the forces in your esophagus to be able to shoot liquids out of your mouth?  Or wait...you want to have random debilitating spasms that are commonly compared to the pain of heart attacks?    The pain that feels like a hot knife is being twisted in your chest and back...that radiates up your neck and into your jaw....

Turned on yet?

Now, imagine that you have all these symptoms and more and not having anything that will make you feel better...even if only temporary.  

Add on the stress of going from doctor to doctor, paying hundreds of dollars, only to have them say "nothing's wrong," "you're depressed," "there's nothing i can do for you...i know this affects your quality of life greatly, but the medicine that i know will help you...im afraid that it will lower your blood pressure too much...and you're too young..."

It's not easy to live like this.   It gets to the point that you don't even mention when you feel bad anymore.   Or you purposely don't tell a doctor everything because it starts to sound excessive.

Nobody ever understands how bad you feel.   They just don't understand that I'm not "just tired."

They can't understand how frustrating it is to know that I'm only 28 and I struggle with swallowing food and liquids, and that I'm suffering in silence EVERY SINGLE TIME I take a sip of water or eat a bite of food.

They can't know what it feels like to have people tell you that it's all your head and that you're a hypochondriac.   I WISH!   I really wish it was a psychological problem.  

Ummm....this ended up being a rant...I didn't intend for it to go this way...but I'm tired of being sick.


Here's a summary of what I've gone through

Symptoms: 

• Dry Eyes
• Dry Mouth
• Urinary Frequency
• Urinary Urgency
• Sun Allergy/Photo Contact Dermatitis
• Esophageal Spasm
• Swollen lymph nodes (parotid glands swollen for weeks summer '06; generalized painful swelling fall '08)
• Joint pain
• Joint stiffness
• Fatigue
• Night sweats
• Dry Skin
• Vaginal dryness
• Frequent sinus pressure and pain
• Muscle pain and occasional weakness
• Hives (fall '08)

Physicians:

• 2 Primary Doctors (+1 Physician's Assistant)
• Urologist
• Gastroenterologist
• Rheumatologist
• Allergist
• General Surgeon

Tests/Procedures:

• 2 Upper GI series 
• Esophagogastroduodenoscopy
• Esophageal manometry
• HIDA Scan
• Abdominal Ultrasound
• X-rays
• Bloodwork (CBC, ANA, ENA, ANA DIRECT, TSH, METABOLIC/HEPATIC PROFILE, etc)
• Esophageal dilation
• Skin allergy test
• Urinalysis
• Sed Rate
• CPR

Medicines:

• Evoxac
• Restasis
• Mobic
• Levsin
• Symax
• Nexium
• Prilosec
• Aciphex
• Kapidex
• Prevacid
• Protonix
• Zegerid
• Enablex
• Ditropan
• Detrol LA
• Sanctura

I'm completely normal...except for having diffuse esophageal spasms, microcytosis, hypochomia, and abnormal red blood cells.    

I think I'm going to vent about this for the rest of the week.   

yay.