Wednesday, February 20, 2013

"Out of breath, I am left hoping someday I'll breathe again..."



Happy Hump Day, Loves!! I have to catch up on my blog reading and replying back to comments from earlier this week. My busy weekend pissed off the lupus. Damn, she has a temper. I don't know where she gets that from.

I managed to get to the gym with Brie Tuesday morning, but after 10 minutes of a slow paced crawl walk on the treadmill, my ankles were throbbing. So, I was the supportive little sister and cheered her on. She is doing a MUCH better job with the whole working out thing. I got on the scale and realized I gained 3 pounds.

Not cool, lupus. Not cool.



OK, maybe for once it's NOT the lupus' fault, it could be the one two three boxes of Girl Scout cookies I may or may not have consumed over the past week. But, if it were not for the Prednisone, I wouldn't be chowing down like the Tazmanian Devil. And if it weren't for lupus, I wouldn't be on said Prednisone.

See. It always comes back to the lupus.

Speaking of lupus, I wanted to fill you all in on some exciting news!

MY CT SCAN IS NEXT MONDAY!!!!!

The pulmonologist was not messing around when she said "Oh, let them try to mess with me!" Woman got that shit done. And you know what? I love it. When dealing with an incurable, chronic disease, there's nothing better than someone who is ready and willing to get shit done.

My appointment with her last Friday went well, but as I suspected, without the CT scan, there isn't anything currently she can do for me. She needs a picture of what's going on inside.

She agreed that Dr. M (rheumatologist) was right to refer me to her, and thus far all the testing he has ordered is everything she would be doing herself. It's quite reassuring that transferring my care from Cooper to Jefferson has been the right decision. With something as unpredictable and subjective as lupus (any autoimmune disease for that matter) it tends to get rather difficult with having to see so many specialists. 

Too many hands in the pot, if you will. I see a rheumatologist, hematologist, neurologist, cardiologist, oncologist, gastroenterologist, opthamologist and now a pulmonologist on a regular basis. That's an ass load of ologist's. Add in my congenital heart defect, and it makes my case even more difficult, because so many adult physicians don't know enough about congenital heart defects to feel comfortable doing more aggressive treatments. But I have a good feeling about this trio of Dr. M. (rheum), Dr. D-squared (cardiac) and Dr. C. (pulmonary).

The pulmonologist feels like my shortness of breath/lung issues could be 3 possible causes.

*WARNING! Boring science/medical stuff ahead!*

  1. Pulmonary embolism- blood clots elsewhere in the body that have broken off and travel to the lungs where they can block a pulmonary artery. We both feel this is highly unlikely due to the fact that I would probably be in more acute distress.
  2. Interstitial lung disease- a cluster of lung disorders that cause scarring of the lungs that gets progressively worse over time. The damage already done is irreversible, but medications/treatments can prevent further lung damage. The scaring in my case would be caused by lupus. I also have a double whammy against be because I spent much of my early childhood on oxygen due to my congenital heart defect, tetralogy of Fallot.  The air we breathe is approximately 21% oxygen, whereas the oxygen I was receiving via mask was 100%. Over time, the high concentration of O2 can damage lung tissue. We know from the pulmonary function tests I had in December that there is moderate lung damage, but unfortunately, there's no way to go back in time and see how much damage had already been done prior to lupus. Where's Marty McFly when I need him.
  3. Low hemoglobin- this would be the much too simple explanation, and we all know this never happens in my case. Hemoglobin is the protein in red blood cells which carries oxygen. Low levels of hemoglobin means less carried oxygen. If hemoglobin drops low enough, this can cause a person to become symptomatic, ie- short of breath, fast heart rate, pale, fatigue. I did some investigating, and over the past few months my hemoglobin has ever so slowly, so not to be noticed, been dropping. Now again, I'm an odd case because of my heart. As a compensatory mechanism to make up for a heart not effectively pumping blood, the body produces more hemoglobin to carry what oxygen there is. (have I lost you yet?) So if you look back at my blood work, I've always had higher hemoglobin levels from what is considered "normal." Even though this drop may not cause symptoms in a healthy person, since my body isn't used to these lower levels, it could be causing symptoms.
Can you believe #3 is the easy explanation??? I hope you aren't cross eyed, I really wanted to lay it all out for you. 

So for now, it's still a mystery until next Monday. 

And to lighten up the mood, I'm going to talk about my makeup. Some of you asked for better pictures of the ideas I came up with to better organize my makeup. I saw a YouTube video where a woman took exact measurements of her makeup, the dimensions of the drawers, and figured out exactly how many serparate compartments she could make for each drawer. Not that I don't love a good math problem, but it made me dizzy. Especially when she went on to say how she cut each piece from foamboard and constructed said organizer. Homegirl clearly hasn't discovered The Container Store.

In an effort to save some money, and in one of my best ideas ever (like ever!) I realized ice cube trays would be perfect for holding things such as my MAC Paint Pots, Maybeline Color Tattoos, Bare Minerals eyeshadows, ect.

My first ever Pinterest project from 2010! Dollar Tree glass jars and floral arrangement filler from WalMart

Dollar Tree ice cube trays (3 in a pack!)

Plastic desk organizer from Target, Dollar Tree ice cube tray and to the right a clear plastic bin from The Container Store


2 lipstick trays and long plastic bin from The Container Store

So pretty!

Hubby: "You mean to tell me you'll clean to take pictures for your blog, but not just because you made a mess?"
Me: "Actually Kato, that's exactly what it means."

Hubby did not pick up on the kick ass 90's movie reference. Fail.

Linking up with Shanna for Random Wednesday

6 comments:

  1. I am so freaking jealous of your makeup. And your organizational skills. If you come over and help me organize I'll pay you in a box of Girl Scout cookies. Oh wait, nevermind. They are all gone because I am fat and ate them.

    ReplyDelete
    Replies
    1. LOL, makeup organization is my new obsession. This video I saw, this chick has an almost $2000 vanity from Pottery Barn. I almost tinkled in my panties over excitement. I'll have to send you the link. I would totally love to help organize makeup. Hey, Kim Kardashian got her start organizing closets, maybe there's hope for me yet!!!! We can hit up the Dollar Stores and organize that shit up!

      Delete
  2. Nothing makes me happier than organization shit. Love it! I don't have the room in the bathroom or anywhere to do this. Someday!

    Lupus is a total butthole. I'm so glad your scan is finally scheduled.

    ReplyDelete
  3. uhhh i need to make my drawers look like this. it looks freaking organized and classy. unlike my life.

    so glad your CT scan is scheduled!!

    ReplyDelete
  4. I just cleaned out my makeup drawer last Sunday. I threw out old makeup and organized it too. I told my fiance how excited i was over my makeup drawer and he looked at me like i was crazy. LOL. I need to get more little bins to store my lipsticks like you have. great job!

    ReplyDelete
  5. 1. Hooray for scheduled CT scan! Hoping for the easy explanation if possible but also just for an explanation for you, period.

    2. Ice cube trays. Brilliant. Also, my husband is about to think my blog is the best thing ever since it's inspiring me to clean and organize.

    3. I love the song "Breathe Again." I downloaded the sheet music so I can (attempt to) play it on the piano and sing it.

    ReplyDelete

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Philadelphia
I'm a thirty-ish year-old foul-mouthed girly-girl who spends my days saving the world as a nurse in a Pediatric Cardiac ICU and my nights trying to be a good wife and mama to my handsome hubby Steve and the best kitties, Princess Matzo Ball Honey Boo Boo Child & Linkavitch Cringer Chomofsky. Enjoy my ramblings as I struggle with systemic lupus erythematosous, cervical cancer, congenital heart disease, domestication, and the quest to find the perfect moisturizer.


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