Houston, We have Liftoff! - Health Update

Term: Spoonie

Definition: A person living with chronic illness.

Origin: The Spoon Theory written by Christine Miserandino

About: The spoon theory is an analogy used by patients to describe their living experience when their illness results in a reduced amount of energy, compared to that of a healthy individual. Spoons are an unit of measurement used to track how much energy a person has in a day. In the event someone runs out of spoons they are unable to continue with their day. 

Example: "I am running low on spoons so we will have to reschedule."

               "I have to save spoons for tomorrow so I should stay in today."

               "She is a spoonie like us, suffering from disease or disability!"

I am sure some of my readers, and even family members have heard me mention my "spoons." I wanted to give you all the definition and origin behind my odd chronic illness lingo. The link is in pink above for you to read the Spoon Theory in its entirety. I adore this analogy, and so does my husband lol It is a tangible way for him to express to me when I have overdone it and am too stubborn to slow down! ;) It's a term you will hear often in our home as we even have a spoonie cat! Our little Apocalypse (yes that's his name) has multiple chronic illness so we often tell him "you ran out of spoons!" when he is tired and grumpy. Our week started out with our poor spoonie kitty at the vet actually! He was battling his mamma for most appointments of the week! (Three in total... so he didn't quite beat me this time haha) He is doing well and on the mend after some infections took a toll on his tiny little immune suppressed body. Here is a picture of him! I realized I have never posted a picture of my darling little Abyssinian kitty. 

He helps me write all my posts.

I had a total of four appointments this week, nothing to out of the ordinary,  also I was approved for my Cytoxan Infusions to start immediately! (Houston, we have liftoff!) I feel confident that after the year of heightened progression I have endured that it is time to undergo this treatment and give my disease a real run for its money! 

The only draw back is that this is also the same drug used when a patient undergoes a Stem Cell Transplant. If you have reached toxicity to this drug you may lose your eligibility to preform the transplant, which my doctors absolutely believe is in my future. My compromise is that I will undergo the Cytoxan, which my UCLA doc prescribed, but for six month instead of a year, then reevaluate. That way I still have the potential for a transplant since I will have not reached toxicity by that time.

 So if all goes as planned next week when I see my UCLA Scleroderma Specialist on the 15th we will be starting Cytoxan just before Halloween!

My other appointments this week consisted of a Pulmonary Function Test, a meeting with my Pulmonologist, and of course my weekly Saline infusion. My PFT stayed more of the same so nothing new to really report there. My Saline infusion however was a different story! I have something called an implanted Port (click for info/photos). This is a device embedded under the skin above the breast for patients who have difficult IV access, or need constant IV access. It is accessed by a hollow one inch needle pushed through the skin into the Ports reservoir. This is actually about ten times less painful than starting an IV I promise! As long as you can get passed the fact that a giant needle is coming at your heart area, you're good! lol ;) Well my port is a bit jumpy since I don't have much... um... "fat" in that area of my body. (small boob joke!) So if not anchored (held in place) properly my port will slide to the side when accessed resulting in a giant needle being plummeted into my chest cavity instead of the device. This hurts. A LOT! Well as you can guess the reason I am telling you this is because this happened. Twice. I was bloody and bruised and not a happy camper! I kept explaining to the nurse that she really had to grab it hard, but I could tell she was hesitant to hurt me from grabbing too tight! After the second miss we called down an Oncology nurse that was very familiar with ports to access me. She got it in one painless swoop! Woohoo! Needless to say I will be wearing high necked shirts for a while until my breast looks less beaten!

Notice the Spoon necklace! ;)

In other super awesome news I started writing for a new media outlet! XOJane is an online magazine for woman to be their "unabashed selves!" It's an outlet I have been following with posts written by woman from around the world and all different walks of life for a while, so when the opportunity arose to write for them I couldn't have been more excited! I was recently their cover feature in an article they titled: Why I Still Want To Look Beautiful, Even Though I Am Dying.

I had to giggle when I saw the edits they had made, especially the title. Not what I would have chosen, but hey, that's the life of a freelance writer! haha I'm just so honored to be part of the writing team! Next week I have a full day of Autonomic Testing, a Saline infusion, and an appointment with my Sclero Specialist from UCLA. I'll be sure to update everyone next Friday!