Wednesday, April 9, 2014

'Cause I'm bleeding out...

Happy Hump Day, strangers!

I must confess, I failed the WEGO Health Blog Month Challenge. But, since I haven't written since last Friday, you already knew that. These last few days have been crazy. CrAzY.

Last Thursday I had my infusion and appointment with McDicky. Due to his douchebaggy type A control freak personality, there is a Quest lab right in his office. This way, he knows all the tests are ran exactly how he wants them done. Different labs don't always run tests the same, which can sometimes lead to skewed results. This works out for me since the nurse can draw blood directly from the line when she accesses my port. Happy veins, happy Marla!

I curled up in the heated-massage chair with a blanket, while poison dripped into my superior vena cava. Any infusion patient seeing the doctor or NP that day is allowed to wait in the infusion room, even if the infusion is complete. So even though I had to wait over an hour, my feet were up, my buns toasty, and my back massaged. Not too bad of a gig.

McDicky lowered my steroid!!! I'm on a maintenance dose of 6 mg of methylprednisolone (equal to 7.5mg of prednisone), and this is the first time in almost 18 months I've been on a dose this small!

Happy happy joy joy, indeed!

On the drive home, my nose started bleeding (luckily I had napkins in the car), eventually it stopped and I forgot about it.

Early Friday morning I received a call from one of the nurses in McDicky's office; my white blood cell count was 2.6 and my absolute neutrophil count was 270. That's pretty freaking low. Like, I want to be the Boy in the Bubble so as not to catch all the nasty germs, low.  I was advised to stop taking my methotrexate and imuran immediately, and repeat my blood work in another 3 weeks.

I spent pretty much all of the weekend in bed or on the couch, had a few bloody noses, but again, didn't think much of it.

Monday I went to kiss Steve goodbye when he left for work, and he had this face headed straight for his lips...

He was like, "Mar, your face!" Certainly not what you want to hear from your husband first thing in the morning. Blood all over my face.

Blood all over the sheets, comforter and pillowcase...

Cleaned up and went back to sleep for an hour or two, a call from Brie woke me up. Her husband Pete is an ER nurse, and even though I wasn't bleeding in that moment, suggested I go to an ER.

Yeah sure, just what I want to do on a Monday.

Brie was on her way down to pick something up from my house, so I grabbed a quick shower. I was sitting on my bed, when I sneezed and felt a giant clot come shooting out my nose. Within seconds, blood was pouring out my nose. I'm a little crazy (I won't post them, it looked like a scene from CSI), started snapping pictures and sent them to Pete (with a wad of tissues clamping my nose shut). I managed to get dressed and not get a drop of blood on the carpet! BOOM!

Brie came in and off to the ER we went. It slowed down on the way there, and by the time we got there, the bleeding was minimal. 

I got registered, and we were taken back to the fast track area. While waiting for someone to see me, an elderly woman next to us kept everyone amused. She reminded us of Mom-Mom, well-dressed, full makeup, and sharp tongued. She had the entire room cracking up. We were sad to see her go home.

The nurse came in, placed an IV and drew some labs, then a Physician's Assistant (PA) student came in to assess me and get my health history. Brie and I, always the mature ones, could not stop laughing. Everything she asked made Brie giggle, and the poor girl used about 10 pages in her notebook to get down my entire history. She was pretty excited to hear my heart murmur, and I still wasn't bleeding at the time, so she went off to talk to the PA.

Then the flood gates opened, and blood started pouring out of my nose again. The PA came in, looked in my ears and throat, and determined the bleed was high up in my nasal passage.

For all you Sex & The City fans, remember when Steve walked in on Miranda and Robert the doctor getting it on, he smacked his face on the wall, and Robert shoved a tampon up his nose? 

Yep, turns out that's basically what they do in the ER. I just didn't have the luxury of a hot, practically naked doctor doing the honors. And, while the Rhino Rocket resembled a tampon, it has plastic tubing attached to inject air into it once it's inserted. The pressure of the air against the nasal cavity walls stop the bleed.

I am happy to report that after years of being relentlessly teased for my big nose, the PA couldn't get the 2 larger sized rockets in far enough, and she had to go with the smallest size. I was thrilled! Then, I sneezed and blood managed to splatter all over the curtain 3 feet away. Everyone was impressed.

I can't begin to describe how uncomfortable this felt. So. Much. Pressure. 

And when the right nostril began to drip blood, the PA decided to remove the left one, and insert packing in both bloody nostrils. That shit hurt. My eyes teared up and my head instantly began to pound. 

The results of the blood tests came back, my PT/PTT were normal, my hemoglobin and hematocrit were normal (not sure how, it looked like a lost a ton of blood), and though my platelets were low, they weren't low enough to cause spontaneous bleeding. I was told to see an ear/nose/throat specialist on Wednesday to remove the packing and follow up with my hematologist to look further into the neutropenia.

Finally home.

I'm a walking ad for Tampax

There are no words to describe how miserable I've been, literally counting the minutes til the ENT appointment on Wednesday. Just like regular tampons can cause toxic shock syndrome, Rhino Rockets can, too, and now I'm on antibiotics for a week. I learned how much I've taken eating and drinking for granted, as it is damn near impossible when there are two giant tampons shoved up your nasal cavity tickling your frontal lobe.

Last night I was sitting on the couch, watching TV, minding my own business, when I sneezed. Don't you know those damn Rhino Rockets came shooting out my nose. Holy fuck, it hurt. Cue the tears and the panic. And with tampons dangling from my cheeks, instead of asking Steve if I was bleeding, the first thing out of my mouth was "did my nose go back to normal?!?!?!?"

It did. Phew!

Miraculously, there was no blood, but I've been so nervous making any sudden movements or doing vigorous activity will dislodge the clots, and I'll start bleeding heavily again.

I went from having no doctor's appointments this week to having 3. And that, my friends, is why I failed the WEGO Health blog challenge.

Linking up with Kathy and Shanna

Friday, April 4, 2014

Made my skin a little bit thicker...

Happy Friday!

I'm quite late getting this out, and it took a lot of strength to get out of bed. Yesterday's infusion knocked me on my ass, and to top it off, my Linky Cat has a bad bladder/kidney infection. Between my throwing up and his peeing everywhere, it's not a pretty sight in my house this morning.

But, I knew I didn't want to fail the blog challenge just yet.

Today is Day 4 of the Health Activist Writer's Challenge

Today's Prompt
Theme song
Imagine your health focus or blog is getting its own theme song.

So technically, I'm supposed to come up with lyrics, but that's not happening today. So, I leave you with a song by one of my favorite singers that has always been one of my Kick Some Ass anthems!

Luck you, Fupus.

Love you all

Thursday, April 3, 2014

You shoot me down, but I won't fall...

Happy Friday Eve!

In a little bit, I'm leaving to go get my chemo and then see McDicky. I really want him to lower my steroid, but I have a feeling I will be brutally rebuffed. The inside of my nose and mouth are covered in sores (no, it's not herpes! Oral and nasal ulcers are one of the thousand annoying things about lupus), which is a sign the disease is quite active.

Boo to that, I say!

Today brings us to Day 3 of the Health Activist Writer's Challenge

Today's Prompt
Keep Calm & Carry On
Make your own poster

Not my best work, but it gets the point across.

Love you all <3

Wednesday, April 2, 2014

Clouds bring the f-stop blues...

Hi my loves,

Today is Day 2 of the Health Activist Writer's Month Challenege

Today's Prompt
Wordless Wednesday

Linking up with Kathy & Shanna

Tuesday, April 1, 2014

Oh, I'm feeling your heartbeat...

Hi my loves.

Today starts the Health Activist Writer's Month Challenge for Wego Health, and I've decided to participate. The thought of blogging every day for an entire month doesn't seem possible, but, I'm going to try. REALLY try. I attempted it in November 2012, and I think I got up to day 8. So, if I make it to day 9 this time around, I'll consider it a success.

Each day has been given a prompt, and today's is Laughter is the best medicine.

It's funny that this is first prompt, because in my profile page for the Hilarious Health Activist award, I wrote that laughter was the best medicine. And dammit, I'm right! I'll choose a good chuckle over methotrexate any day!

The prompt says in honor of April Fool's Day (no 'I'm pregnant' jokes please. That shit wasn't funny even before I knew my baby making factory would be out-of-order for life), tell a funny story or a joke.

Picture it. Pennsauken. 1996.

It was a particularly cold and windy fall afternoon at my high school football game, not a good combination for a color guard member of the marching band. Laugh all you want, twirling and tossing a metal flagpole in the cold and wind takes mad skills.

I remember being utterly exhausted and having a hard time getting air in, but, the show must go on, and I pushed through the rest of our halftime show. By the time it was finished, I was spent, gasping for air and my heart pounding out of my chest.

Next thing I know, I'm in the back of an ambulance with an oxygen mask on my face, the band director, Mr. Webster by my side, on our way to the local hospital. This was way before the age of cell phones, and couldn't get a hold of my parents, but someone got a hold of Brie, and she met us at the ER.

After all my usual tests, we were waiting to see the cardiologist, Mr. Webster and Brie were doing their best to keep my entertained.

And then he walked in; McDreamy before there ever was a McDreamy.

And my heart monitor went...

beep. beep. beep. beepbeepbeepBEEPBEEPBEEPBEEPBEEPBEEPBEEP

At the exact same time, both Brie and Mr. Webster yelled, "MARLA!"

Brie loves telling that story, and the few times I've been to the ER since then (same hospital where I was finally diagnosed with lupus 12 years later), I always looked for him.

I always laugh when I think of that, and I'm sharing this today because the endocrinologist I have an appointment with in a few hours is quite easy on the eyes. I can't help but wonder if the same thing would happen.

Love you all.

Monday, March 31, 2014

Monday, Monday...

Happy Monday, my loves.

I just tried to do oil pulling, swishing coconut oil in your mouth for 20 minutes to draw out toxins. Apparently, it's been around since before Jesus, but I keep reading that it's all the rage lately. I figure with the 27 pills I take a day, my blood is chock full of toxins, so I gave it a whirl.

I lasted 20 seconds before the texture made me gag and I spit it up all over myself. Classy broad I is.

And now I have a hot cup of caffeinated deliciousness beside me. All is right in the world.

For someone who just won a Major Award, I haven't been much of a good blogger. It took much longer to get used to the changes in my medications, and it figures now that I'm finally feeling normal (normal for me, people), I have chemo on Thursday. What a vicious circle.


My phone just beeped that the 20 minutes is up. Victory is mine.

My new health insurance has an annual out-of-pocket maximum, which I met on January 6th. Is that impressive or what? Since it was one chemo session that met that amount instead of many appointments over the year, we just got slammed with one gigundo (that's a real unit of measurement, folks) medical bill.

That's the cost of ONE (1) infusion, just the medication, not counting access kit for my port, needle, IV tubing, fluids, pre-meds, hospital/nurse charge. No, that is not what we owe, but that gives you an idea of how expensive chronic illnesses can be. That comes to $89k+ for the year. For one medication. Scary stuff. But luckily, they put that nice, happy smiling doctor up in the corner of the bill. How sweet.

With that said, tomorrow starts the April Wallet Watch (April 1-30) with myself and Steph from Life According to Steph. Remember I did the January Spending Freeze and September Spending Freeze? I planned to do a total freeze again, but, looking over my calendar for the month, it doesn't seem feasible. So, with the exception of already budgeted scheduled plans, there will be no spending. No trips to Target, unless it's for food or running of the household items, no breakfast/lunch dates with Brie and PJ.  I'll use the drive-thru to pick up prescriptions at Rite Aid so I'm not tempted by the makeup displays and Cadbury Cream Eggs. No online purchases, again, unless it's for running of the household items. (Amazon Prime to deliver heavy containers of kitty litter... score!)

I am allowing myself:
1. 1 Dunkin Donuts coffee per week for appointments with my therapist, using my weekly $0.49 coupon from Facebook. Problems are much easier to talk about when they taste like Dunkin Donuts.
2. The use of Groupons/Living Social that have already been purchased.
3. I can spend money I got back from Ebates on going out for Flyers playoff games.

Be realistic with the rules you set. If you know you cannot live without your Starbucks mocha choca latta ya ya for your 8am Thursday morning work meetings, then factor that into your budget. Don't set yourself up to fail.

Then, come back to Steph or myself on May 6th, grab the button, and link up! Can't wait to see everyone's results! Happy $aving!!!

Life According to Steph

I have doctor's appointments Tuesday and Wednesday, chemo on Thursday, so I'm not sure how much of an online presence I will have this week. I thought there was a Wego Health blog challenge for the month of April, but there is no information up on their site yet. I have failed both challenges I've tried in the past miserably, so if one does in fact start tomorrow, I will have at it.

Love you all

Monday, March 24, 2014

I'm more than a bird, I'm more than a plane...

Happy Monday, loves!

This weekend was filled with emotional highs and lows. Every time I felt my spirits lift, I would hear something that brought me back down. That's certainly a way to stay grounded.

Heaven received a real-life super hero yesterday, and I know it's now a much better place. I've taken care of so many amazing kids over the years, but there are truly special ones that find a spot in your heart. It was hard to miss the monitors, the IV's pumping medicine through his veins 24/7, his tiny little face covered by the mask supplying nitric to keep the arteries to his lungs open, the hospital room that became home for almost 3 years. But, through all of that came a smile so sweet, an infectious laugh that warmed your heart, and a spirit so strong it gave Superman a run for his money.

My heart aches for his family, who did everything and more in their power, trusted my colleagues implicitly and were grateful for their expertise, and who never once thought they were entitled to anything. Sometimes I don't know where they found the strength to keep going, but I hope they have comfort in knowing he is at peace and reuniting with other heart warriors.

I'm thankful to have known him, I hope I made some type of impact on his much too short life, as he has certainly made an impact on mine.

Rest well, sweet boy.

Spiderman didn't realize he was face-to-face with a super hero (far right)

For information on pulmonary hypertension, go here

I hate segueing right into this, but I do have something exciting to share.

Last Friday afternoon, I was named the 2014 Wego Health Hilarious Health Activist! I'm still in shock as I was up against some extremely inspiring activists, who all deserved to win. Thank you again to WEGO Health for this honor!!

You can watch the ceremony here

Lately I have been feeling blah about my blog, questioning if I was doing enough and if I wanted to change up the format. But, this was exactly the swift kick in the ass I needed to realize that I'm reaching out to so many, and to keep doing what I am doing.

THANK YOU to the judges from WEGO Health for seeing something in me, and thanks to all of you for your continued support!

Congrats to the other finalists, and to the winners of all the other categories!

Love you all <3

She's a small wonder

She's a small wonder
Thirty-something foul-mouthed girly-girl. Wife. Kitty mama. Daughter. Sister. Aunt. Friend. Pediatric Cardiac ICU nurse. Wannabe super hero. Lives life to the fullest with systemic lupus erythematosous, an assortment of autoimmune diseases, and congenital heart disease.

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