And so it goes.....

So Today I went to meet my surgeon and he was awesome. I feel really comfortable which is always a good thing before the person operates on you haha. But seriously, he kinda freaked me out a bit as well, or maybe it's just the nerves since it's happening soon. It had never occurred to me before that I was" really young" for this procedure. I was thinking that it was all good because I just turned 21 and definitely am not a little kid anymore but apparently it isn't too common. So that was strange to me.... And then listening to what this means for my future worries me, but there is no alternative. I'll just deal with the future as it happens.
And the possibility of rupturing my lung and a chest tube freaks me out beyond all get out.

2 days.....

What is a Port?

So many people have been asking me lately, "What is a port?" so I think that should be answered.

A port is a device located just under the skin that connects to the heart to give meds or to draw blood. It is "easier" to use for medical personnel and the patient when frequently getting meds ...... basically. Oftentimes, it becomes neccessary, though. The device is usable usually for around 10 years!! It is simply maintained by flushing every month (since I go to infusion every 3 weeks, I'm good to go) and by being sensitive to not hit it or put pressure on it. (Hence no contact sports, roller coasters, etc). Everything else is fair game. When being used a specialized needle is connected to it through the skin and it's good to go. :)

In my case specifically: For 5 years on and off now, I have been receiving various medications intravenously. Most recently and for over a year now I have been on a chemo (yes, chemo is used for cancer treatment but for a variety of other medical ailments as well) medication called Orencia. While hooked up to the IV, I get nauseous, a headache, it burns, and I have trouble keeping food in. This lasts for about 2-6 days after, yet it isn't the most of my worries. My veins have begun to reject the meds so it is quite hard to get the IV started. Even when the catheter is placed in the vein and everything looks good, it tends to blow and then a new IV spot must be found. I am running out of usable places and even then it doesn't work. The most sticks I've had lately is 9 and a specialized helicopter team had to come place it. But success was made!! lol

This process used to be hard about a year ago and my doctor told me to consider getting a port, yet I declined since I went through a long period of only 1-3 sticks. But now it is getting to a point where my nurses say that a port is the way to go. I feel as if I'm succumbing to it, yet at the time I feel as if I am being brave by doing what needs to be done and facing it head on. I mean.... I am blessed that it isn't worse and I don't have another option anymore. 

So yup!! That's the story. Oh and this is basically a visual of what a port is :

I think that was pretty descriptive, but I'm open to answering any questions. :)
And no worries 'cause God's got this one since I'm His princess <3

One Day at a Time

Countdown- T minus 5 days until I get a port.

Personally, I wasn't worried. It was something that needed to be done and was a long time coming. My doctor told me to consider it a year ago yet I said I don't need it. But, I feel like I am finally submitting and accepting that this will be a lifelong battle. I shouldn't feel that way though because everything happens for a reason and in the end it all works out. And quite frankly, simply put- I am blessed. :)

So I guess I should start from the beginning.

When I was 11 and in 6th grade, I got sick. I went to the doctor that day after school and had a quick strep test which was negative but my doctor decided to do a culture as well. The next day the results came in and I had Strep throat (weird because as a child I only ever had Strep in my sinuses) so they gave me a shot of penicillin and sent me on my way. Three days later I was still sick and had a fever of 104 so my parents took me back to the doctor and they gave me another round of penicillin. (Apparently my body is immune to penicillin- go figure) I still continued to get sick and the Strep went into Rheumatic Fever. 

In case you are wondering, nope- you've probably never heard of that before. "Why" you may ask? Because they thought it was mostly eradicated- I'm special :) I was actually pretty lucky to have an older doctor in the practice who had only seen it once before but was able to recognize the symptoms. 

Long story short, I was unable to move for a few months and missed most of 6th grade. After that as a complication of Rheumatic fever I broke 5 bones in 6 months (and my body doesn't heal due to the disease). I was diagnosed with JRA/JIA (Juvenile Rheumatoid?Idiopathic Arthritis), osteopenia and then osteoporosis later that year.

That was 9 years ago........
and a lot has happened since then, but that's all I feel like writing at the moment :)