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And then, this happened…

 

Once Upon A Time, there was a girl named Meleah.

And when she was 21 years old – she gave birth to a beautiful baby boy.

And then she blinked her eyes, and he graduated from high school.

And then, she cried, and cried, and cried.

The end.

Soooooooo … This Happened

My Dancing Daddy

We interrupt this blog – and your day – with the greatest video EVER made.

This is my father taking a little “dance break” while working alone, in the office, on Sunday.

ENJOY!!

 

Medical Madness – Food Allergies and Autoimmune Issues

 

*Since I have a lot of people asking for a lot of updates – regarding my ongoing health issues – rather than writing a million different emails, I decided to answer all of your questions in this here blog post.*

 

Once Upon A Time – there was a girl named, Meleah. And when she was 27 years old, she had her very first allergic reaction. Except she really didn’t know what was happening, because it never happened before. Luckily, her co-workers called 911 and Meleah was rushed to the hospital for life saving measures.

Afterward, Meleah was referred to a specialist who determined that she was allergic to three things: Mustard. Strawberries. Peanuts. So, Meleah simply decided to avoid those three things.

And then she carried on with the rest of her life.

 

But with each passing year, things kept getting worse.

 

First she got sick.
And then she got sicker.
And then everything went to hell.

 

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Meleah had this allergic reaction.
And Meleah had that allergic reaction.
Meleah had so many more allergic reactions that she totally lost track.

And then one day, in July of 2011, Meleah almost died, again.

Luckily, her son called 911, and she was rushed to the hospital for life saving measures, again.

 

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At that time, Meleah’s allergist ran a gamut of tests. First, he administered a skin scratch test. And then he ran an Antinuclear Antibody ANA test – proving she had an undetermined and underlying autoimmune condition.

However, convinced the skin scratch test results were totally implausible, he ordered blood tests for confirmation.

Sadly, that’s when Meleah was informed she was allergic to everything on this list.

So, Meleah has avoided all of the foods on that very list, ever since August 2011, mostly.

 

Except things kept on getting even more worse.

 

By the year 2013, Meleah was diagnosed with: Crohn’s Disease, Rheumatoid Arthritis, and Sjogren’s Syndrome, along with severe Food Allergies. And then, something new and disturbing, started happening to her body.

In addition to having multiple anaphylaxis allergic reactions, Meleah suddenly started waking up in the morning with a mangled face – for no apparent reason whatsoever – every seven to fourteen days.  And because the mangled face situation is impervious to Benadryl, Meleah has to go to her primary care doctors office, in order to receive emergency prednisone injections, followed by a seven-day cycle of high dose steroids.

 

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Desperately seeking answers, Meleah went back and forth to a billion different doctor appointments.

Her allergist suggested the puffy lip was a rheumatological problem. But her rheumatologist suggested the puffy lip was an allergy problem. The one thing all of her doctors could agree on is that too much prednisone – all of the time – is very, very, very bad.

Except that since no one can figure out what’s causing her fat, puffy, swollen lip, or her random anaphylaxis attacks  – no one can figure out a different treatment plan, and no one can figure out a prevention plan.

And this went on for entire year.

 

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Exhausted and ready to give up altogether, Meleah demanded a second opinion from a brand new allergist.

And here’s how that worked out.

 

During the initial visit, the new allergist told Meleah that blood tests for food allergies can sometimes result in ‘false positives’ and that skin scratch tests are far more reliable.

She further explained that because Meleah’s ANA tests are positive there could be some other underlying condition making her body think food is the enemy. Antibodies are made by white blood cells and they recognize and combat infectious organisms in the body. Sometimes these antibodies make a mistake – identifying normal occurring proteins in our bodies as being foreign and dangerous – starting the cascade of inflammation causing the body to attack itself.

Then she instructed Meleah to stop all medications, and placed her on a clear liquid diet, for three days in a row, in order to obtain ‘clean’ skin scratch testing results.

 

One week later – Meleah went to Lab Corp for some blood work, followed by her second visit to the new allergist.

 

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Accompanied by her best friend, Meleah felt more than hopeful.

She actually felt excited.

And then Meleah silently prayed these test results would be different this time.

 

Once situated in the exam room, the new allergist explained the different foods they would be testing. And then she marked Meleah’s arm with pen to coincide with the list of foods they were testing.

 

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Next, the new allergist asked Meleah to think of any foods she would like to try eating while undergoing an oral food challenge (OFC). Meaning, whatever foods come back negative on the skin scratch test, Meleah could eat that food in the office, and then stay two hours afterwards, for observation, just in case.

And for the first time in three years, Meleah imagined eating an apple. And how crisp and juicy it would taste.  And for the first time in three years, Meleah truly believed things could get better.

Then the new allergist poked Meleah, with tiny needles filled with food samples, on each side of the pen marks.

 

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And then Meleah had to wait.

And wait.

And wait.

 

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But Meleah immediately knew these test results wouldn’t be any different this time, because her arms were on fire – burning, itching, stinging, and throbbing – filling with histamine.

So Meleah wasn’t really surprised when the allergist came back into the room to look at the results.

 

But the new allergist was surprised.

Very surprised.

In fact, she was completely shocked.

 

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Meleah continued to baffle the medical community, when her allergist realized that Meleah is NOT allergic to: wheat, dairy products, or shellfish – which is the complete opposite from most people who suffer from food allergies.

But Meleah IS allergic to: soy, chocolate, apple, rice, pear, tomato, barley, oat, rye, peanut, almond, cashew, hazelnut, pecan, malt, hops, sesame seed, garlic, onion, ginger, mustard, apricot, cantaloupe, carrot, celery, cucumber, grape, lemon, orange, potato, blueberries, and strawberries.

 

 

And that’s when the allergist told Meleah, “You shouldn’t be testing positive for things like cucumber, and celery, and rice. That doesn’t make any sense. Something is very wrong, here.”

Only, Meleah has known that something is very wrong, for years.

The allergist looked at Meleah’s arm again and then she said,  “I can’t give you any food challenges in the office, because with these kind of results, it’s way too dangerous.”

And just like that, Meleah’s hopes and dreams of finally eating an apple were totally crushed.

 

 

Before leaving the office, Meleah was given one last chance to cling to a tiny shred of hope.

The new allergist wasn’t completely ready to give up, because she firmly believes there really is another underlying condition causing these reactions, and she is determined to figure out what it is.

“Before we go any further,” The new allergist suggested, “Let’s wait for the blood test results. If those reveal specific inflammation markers, such as tryptase, that would explain why you’re testing positive to so many foods, and then we can derive a plan of action.”

And that’s precisely when Meleah fell in love with her new allergist and her can-do attitude.

Meleah was all kinds of exited, and all kinds of jazzed – because just maybe someone was finally looking in the right place, and just maybe someone could finally help Meleah get a better handle on this situation.

 

But then Meleah had to wait.

And wait.

And wait some more.

 

 

During that time, Meleah felt more scared than ever. Mostly because she was terrified to eat anything.  If her allergist wouldn’t let Meleah eat any food under medical supervision, then what the heck was Meleah supposed to eat without medical supervision?

And since Meleah still doesn’t know exactly what’s going to set off the next attack, or how bad the next attack will be, or how long the next attack will last, or who will be available to drive her to the Emergency Room when the next attack becomes life threatening, she walked around in a perpetual state of panic.

 

 

 

Two very long weeks later – the test results arrived and Meleah went to see the new allergist for the third time.

Unfortunately, the blood work did not reveal any inflammation markers the allergist expected to find. Thus making Meleah’s  hypersensitivity to food all the more confusing.

And that’s when Meleah was glad she brought her mother to this appointment, instead of bringing hope, mostly because sometimes hope can be harmful – especially when you just end up feeling even more hopeless, time and time again.

 

 

Nevertheless, the new allergist had one more trick up her sleeve.

And quickly referred Meleah to a specialized program at Penn Medicine specifically for: food allergies, anaphlyaxis and angioedema. Because maybe they will be more equipped to analyze what’s happening to her body.

 

* Meleah is scheduled for her first appointment with Penn Medicine on March 31st. *

 

 

In the meantime, Meleah has to keep a food journal – tracking what she eats, when she eats it, and what kind of reactions she has afterward.  And Meleah remains stuck in a holding pattern, with no idea WHY she keeps having these reactions, or HOW to prevent them. Because even when she IS totally-super-careful, and even when she avoids all things she’s allergic to, she still winds up in the hospital from an anaphlyaxis allergic reaction, or, she wakes up with a fat, puffy, lip.

Or both.

 

 

 **** UPDATE ****

Sadly,  my appointment at Penn Medicine was not very successful. In fact, it was an epic failure. The particular doctor I met with wasn’t exactly qualified to deal with the gravity of my issues, nor was she interested in solving the medical mystery. Very disappointing.

Luckily, when I returned to my allergist on Thursday, to discuss what happened at Penn Medicine, she made me feel a million times better. And here’s why….

1. My allergist thinks the specialist I saw on Monday is the absolute WRONG specialist for me and my issues. YAY. In fact, she will never refer another patient to that doctor ever again.

2. We are moving forward with ‘Oral Food Challenges’ in order to determine definitively what I’m allergic to. On April 17th, I will get to eat my very 1st apple in over 4 years, and then I will stay in her office for 4 hours afterward for observation. Then, each following week, I will get to pick a new fruit or vegetable, to eat in her office, and stay for 4 hours, to see what kind of reaction I have.

3. My allergist also believes my fat, puffy, swollen lip issue is actually “HAE” related – even though my blood work doesn’t show any C1-inhibitor deficiencies. There’s another form of HAE [Type III] which might explain A LOT. Which also means there *is* a treatment, that does NOT include steriods, but would require weekly injections. Therefore, after I have a few more test at Lab Corp on Monday, we can discuss when and how to move forward with that as well.

4. This allergist is a no-nonsense, super aggressive, lets take charge, kind of doctor and she’s awesome. Also, she is finding another “Academic Specialist” for me, in the NYC area, who will be more suited for my ongoing flareups. YAY.

#hoperestored

 

Have You Ever – Volume Nine – The Quitter Edition

 

Have you ever tried really, really, really hard – and repeatedly – to make yourself feel better, but nothing seems to work? And no matter what you do, or how you do it, you just keep on getting sick, and you just keep on getting sicker, and you keep having flare ups, and you keep having even more flare ups. And some of those flare ups are really, really, scary. And some of those flare ups are really, really painful.

And because there’s nothing you can do to prevent those flare ups, thanks to extensive autoimmune issues, and because there’s nothing you can do to prevent from getting sick, you start to feel really, really, frustrated. And that frustration turns into anger. And that anger turns into rage. And that rage leads to a very dark depression. And that kind of depression makes you withdraw from the world. And then you feel really, really lonely.

And even though your family and friends are totally super supportive, and they want to be there for you – except that you don’t really want to socialize, because all you have to talk about are your medical problems, and side effects from medications, and the cost of prescriptions, or how many doctor appointments you have in one week. And that makes for some pretty lousy conversation, especially when you’re not 85 years old.

But what REALLY makes you THE MOST MAD is when you cook a special meal for your family, and you don’t eat any of it, not even ONE BITE, specifically to AVOID any kind of allergic reaction or flare up – only to wake up the next morning with a fat, swollen, puffy lip ANYWAY.  So when people ask questions like, “What did you eat?” basically insinuating you caused your own flare up, that just makes you want to stab them, in the throat, with unsharpened rusty scissors.

And you’re terrified – every single day – riddled with anxiety, because you never know what’s going to set off the next attack, or how bad the next attack will be, or how long the next attack will last, or who will be available to drive you to the Emergency Room when the next attack becomes life threatening.  So you walk around in a perpetual state of panic. And distress. And worry. And misery.

And you’re exhausted, simply from being trying to ‘positive’ for everyone else, all of the time. And you’re sick of of these rules and restrictions affecting the quality of your life – like avoiding certain foods, or not going to the movie theater because of your compromised immune system – because even when you follow all of those rules and restrictions, you still wind up in the hospital. Which just makes you want to give up, altogether. And you’re so fucking tired you can’t even muster up the strength to brush the mold off your teeth.

So you stop writing. And blogging. And reading. And commenting. And tweeting. And participating. And you just hideout, under the covers, watching television, while ‘suffering in silence’ because someone once told you there’s a type of dignity in keeping these kinds of problems to yourself.

Except that suffering in silence, only makes you feel even worse, because you really need to scream on the top of your lungs – and cry uncontrollably – to anyone willing to listen.

Because, seriously?

This shit just isn’t fucking fair.

 

Happy New Year, Mofos!

 

 

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Screen shot 2013-12-27 at 1.02.30 PM

Happy 39th Birthday – To Me

Thirty-eight was probably the worst year of my life, especially regarding my never-ending annoying medical issues. I’ve struggled a lot and I’ve certainly cried a lot. But I’ve also laughed a lot – mostly because of the people in my life, like you.

In fact, I would like to use this opportunity to express my gratitude, to my amazing friends, for making my life way less shitty – literally and figuratively. I would not have been able to get out of bed, fight the good fight, or find the funny, without your support, virtual hugs, comments, emails, text messages, and love.  And I just want to thank each and every one of you – with my WHOLE heart.

 

Here’s to my last year before turning 40!

 

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30 Days Of Photography – Blogging Challenge – September 2013 – Round Up

Well, people…

Somehow I managed to survive yet another blogging photo challenge. I posted thirty pictures in thirty days – based on some of the craziest and most difficult prompts, EVER. And I think I did a pretty good job? Hooray for #teamlame. I would like to give a big thanks to MWJ and ZIVA for hosting the challenge. I’m already looking forward to the next one!

Now if you’ll please excuse me, I’m going to sleep for the next week.

Just in case you missed any – here are my collection of photos.

Day 1: Ice Cream
Day 2: Illuminate
Day 3: Soft
Day 4: Backwards
Day 5: Mushroom
Day 6: Two Birds One Stone
Day 7: Seven
Day 8: Texture
Day 9: Disguise
Day10: Close-up
Day 11: Girly
Day 12: Tremor
Day 13: Wrong
Day 14: NSFW [Not Safe For Work]
Day 15: China
Day 16: Biblical
Day 17: My Junk
Day 18: Always
Day 19: Never
Day 20: Transparent
Day 21: Anatomy
Day 22: Frustration
Day 23: Tolstoy
Day 24: Carnival
Day 25: Poison
Day 26: Rising
Day 27: NSEW
Day 28: Lover
Day 29: Circle
Day 30: Happily Ever After

The complete set can also be found on my Flickr account HERE!

And that’s a wrap, people!

30 Days Of Photography | Day 30: Happily Ever After

Day 30 - Happily Ever After

 

#TEAMLAME

 

*Please take a look at other contestants participating by clicking here!

30 Days Of Photography | Day 29: Circle

Day 29 - Circle

 

#TEAMLAME

 

*Please take a look at other contestants participating by clicking here!

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