UPDATE!

Hey all. So very many things have happened since I last had the chance to write. I will do my best to summarize the details without making this post too lengthy.

1) We found out that the supposed infection was actually a blood clot. Dr. Alomari came up to my room with his ultrasound machine and we found that there is a large superficial clot that extends in a vein from the bottom of my toes all the way to the back ankle. I was so relieved - as was everyone else. Because this was a clot and not an infection, it made sense that I hadn't been responding to IV Cylndamycin. HOWEVER, the bad news is that I will not be walking anytime soon in the given area. I got pretty emotional about that, as it may take a month until I was able to put weight on it and walk again.

2)Then, yesterday morning, I woke up terribly ill. I was shaking out of control, felt freezing, was nauseous, had cramped legs, and a slew of other volatile symptoms. My buttocks area was so sore and throbbing, and I knew this feeling all too well. "Maybe it's because you have yet to go pee in a while," the nurse said. Inside, I knew that wasn't the case. However, I humored her and went anyways, and we then preceded to take my temperature. It was 104.  Next thing I know crowds of doctors were coming in and out repeatedly. I was so incredibly out of it that I could barely make out faces and my memory was absolutely horrid. Right away, the surgical team started me on Vanclomycin and Avelox intravenously. We continued my pain medicine regime and had decided to see how things go throughout the day. By midday, my temperature was under control at about 101 degrees. However, at night, a huge large red area formed on my thigh which was not surprising to me. Sometimes with my celllulitis infections, the redness does not reveal itself until much later on.

3) I woke up this morning feeling still incredibly sick, except this time my buttock area was way more sore than it had been yesterday or even last night! I asked the nurse to take my temperature, which read 103. I find this worrying because even though it has gone down a degree, it is still so incredibly painful. Not to mention I am on pain medicine and the two different IV antibiotics had been running for just about 24 hours steady.
So, the nurse just paged surgery again and gave me some Motrin to try and bring the fever down. For now, I need to wait to see how things play out as the doctors figure out a plan as this one may not be aggressive enough.

Below is a picture of my younger sister and I from when she came to visit me last night. Seeing her is always such  a mood booster! There are also a couple of pictures of my mom, dad, and nana. I don't know how I would be getting through any of this without their support. Never underestimate a good support group. Situations like these make me realize just how incredibly grateful I am for all o my magnificent family and friends. - A

Physical Therapy

Hey everyone. So there has been no improvement in my foot yet; therefore, it has been determined the clyndamycin antibiotic is not working. In the meantime, I am being kept comfortable with a heavy dosage of pain medicine. Today, I started physical therapy. Even with the pain medicine in effect, I am having a hard time walking on my foot and therefore I need to be taught effective methods for maneuvering my way around until the foot starts to heal. The physical therapist came in and basically just taught me how to use the walker from my bed to the bathroom. It is extremely simple; just move the walker, take a step with your left foot, and then your right one follows. Below is a picture of me in progress with the physical therapist. - A

Picture Update: Current Cellulitis/Healing from Surgery

Hey guys, so just a quick post showing some pictures of my leg at present.

To begin with, here is the infected area. The redness is not very prominent; rather, it is more of a muted pink rather than a fiery red. However, the pain is so incredibly rampant and relentless. There is also a great deal of swelling.

As far as the healing from my last surgery in which I had co2 laser done along with schlerotherapy and some other injections, here are some pictures:

There is still a fair amount of bleeding associated with these. - A

Did you know a good support group actually has a biochemical impact in the brain?
It's true, and the proof stems from concordance rate studies (which generally involve MZ twins).

Example:
take a pair of MZ (identical) twins
remember that MZ twims share 100% of the same genetics

both twins can go through the same traumatic experience, however can have very different support systems throughout those times
for the sake of this example, let's say a pair of twins lose a parent during their freshman year of college.
One twin attends college in the Northeast, while the other attends college on the West Coast.
The twin on the West Coast has developed a strong support-network, and socially speaking is adjusting just fine to their new surroundings. She has formed strong bonds with some of her classmates, and exhibits a host of healthy relationships in her daily interactions.

Let's say the twin located in the Northeast is more reticent in nature; her shy personality has hindered her ability to make friends, unlike her sister on the West Coast. She has a hard time opening up to people due to her shyness, and therefore has not become socially acclimated to her new academic setting. When tragedy strikes and she is forced to bereave the loss of a parent, she does not have the same network of students her own age to help provide her with emotional support, unlike her other sister. 

Years later, the twin who attended school in the NE is diagnosed with schizophrenia, while the other twin remains just fine. This doesn't make sense though, right? After all, if they both posess the same genotype, then shouldn't both twins fall ill with schizophrenia? Seeing as though both have the exact genetic makeup (yet only one got schizophrenia), it is apparent that environment plays a tremendous role that cannot be unaccounted for. It has been discovered that if one MZ twin has schizophrenia, there is a 50& chance the other will obtain it as well. 

So it appears (in regards to this specific example) that the schizophrenia can be traced back to the support system's in which accompanied (or in the case of the NE twin, unaccompanied  either twin throughout these times of hardship. Both twins were born with the same trait in which could have been activated by certain environmental factors. 

Back in Hospital

Hey guys - I am back at Children's Hospital Boston due to another cellulitis infection. This one is primarily in my foot region. Pain wise, it has been one of the worst ones I've had in a while. As far as systemic symptoms are concerned, I have been experiencing nausea, tiredness, overall fatigue and low-grade temperatures but nothing striking. For me, each infection has something that stands out about it. For example, with some infections it is the incredibly fierce crayola redness that imparts upon the infected area. For others, it is how sick I got systemically. For this one, it is the relentless pain that is rampant throughout the foot and ankle area. I've been here a day now, and I still cannot bear any weight on it.  It is swollen and red, although the redness is not especially vibrant by any means.

I am being treated on IV clyndamycin and am being given morphine for pain. One thing in which I have learned, however, is that IV pain medications do not last as long as the oral ones (or so I have been told). Therefore, given the intensity of the pain in which I am experiencing, they may switch me over to oral morphine.

Above is a picture from me in the ER last night. As usual, all of the nurses have been so incredibly friendly and helpful. One of my nurses, Christina from 10 NW, is so sweet and friendly to talk to! I had her last during my last hospital trip as well. A good nurse can undoubtedly make a huge impact - so never forget to smile and say thank you! : ) - A

I’m tellin’ you things get better through whateverIf you fall, dust it off, don’t let upDon’t you know you can go be your own miracleYou need to know!

If the mind keeps thinking you’ve had enoughBut the heart keeps telling you 'don’t give up'Who are we to be questioning, wondering what is what?Don’t give up, through it all, just stand up

My Mistaken Diagnosis (Part 1)

She sat fiddling with her pen as her eyes were glued to me. She seemed to be fixated upon my every word, as though each syllable of mine uttered was a drip of morphine being implanted into her system. “You are a classic mood disorder,” she said. “I don't know why it has taken for now for someone to pick up on this. You are bipolar.” It felt like a heavy diagnosis, and that's because it was. Even if one pushes aside the social stigma that accompanies such mental illnesses, there is still well, the illness itself to grapple with. Life long mood swings and a slew of depleting symptoms. Symptoms, of course, could be mostly managed with proper treatment, but there were still a multitude of uncertainties. It's complex and not at all concrete. For me to go into detail would be my 25 page paper from last college semester all over again.

“We're going to start you on lithium,” she said. And what about the anxiety? “Most people with bipolar disorder have other mental illnesses as well, like OCD. That doesn't surprise me. What surprises me is no one has picked this up until now, the bipolar.” Teary-eyed, I listened to her, trusting her expertise. “You know,” she said, “my granddaughters name is going to be Arianna, too. You fascinate me. You are very interesting. I look forward to working together. You fascinate me."

• A

MORE FREEDOM, PLEASE!

When you are in the hospital so much, it can seem like a fight to hold onto your own identity. Every hour of every day there is someone telling you what to do – an army of people dictating your every move, from what you can eat to how much you are able to bend your arm (if you are lucky enough to have an IV directly where it bends, that is!). I found that as I have aged, I have become more internally annoyed with complying to all of these things whenever I am hospital bound. It seems that just when you are about to fall asleep, finally (after hours of mainly strangers poking and prodding you), a nursing assistant comes in for vitals. That nursing assistant then wants to know how much you have gone to the bathroom, if you can sit up so they can listen to your lungs, what you are doing with your life outside of the hospital, and so forth.

Forgive me if I sound incredibly arrogant and unappreciative in the above paragraph as it is not my intention in the slightest. Those staff workers are the ones playing a vital role in chronicling my health's progress, and are merely doing their job. For all I know they too were unable to sleep prior to going to work and are just doing their best to make it through their work shift. I always try to be mindful of that with every hospital staffer I meet! Also, I never take my personal frustrations out on any nurse, doctor, etc. Inside I may be really annoyed at the simplest of things, but I do my best to keep it together. Ultimately, they are all there to help and assist, and for that I am grateful.

Sometimes, though, I just want to tug off my allergy bracelet and rip out my IV and go running outside! I want to be like a normal kid in their twenties, and not be bound by all of the rules in which I have to so meticulously follow while in house. Yet, the rules are that way for a reason, and each little rule adds up to a bigger picture. Therefore, I know it is vital to comply. Still, coming home is like a breathe of fresh air! Although there are still rules to comply with, I can stay up until 2 in the morning without someone documenting it in the computer or checking in with me every half hour.

Do any of you ever feel the same? - A  

Lasered Area

During the last couple of admissions to the hospital, there has been a lot that has gone on in which will ultimately be for the better. Right now, I can barely walk to the bathroom without being in a momentous amount of pain from the co2 laser I had done with Dr. Alomari. I am really frustrated as it has been about two months since I've been able to really just live life as my version of "normal."

This is what the lasered area currently looks like. I'll write more soon! - A

Update, @ Children's

Hey everyone! I apologize as I have not posted in a bit. Since I last posted, I have been hospitalized at Children's Hospital for another cellulitis infection. I also had surgery yesterday with the incredibly talented Dr. Alomari. I have wanted to post while here, but was too fatigued to do so. Currently, I am writing this from my hospital bed at Children's. Because of yesterday's surgery, I am on pain medication which is making it feel as though the room is swaying back and forth. I promise to write more within the next couple of days. Below is a picture from when my sister visited me in the hospital the other night. I always miss her so badly whenever I am hospitalized. - A

Make It Out This Town - Eve

When I close my eyes I can see me flyin' home
High above the clouds....
Swear I won't look back, if I get the chance
I won't come back around

Yo, have you ever laid in bed and it's late in the night,
Starin' at the ceiling talkin' to God about life?
Askin' when it's gon' happen, just maybe it might
Made a lot of life turns, some wrong and some right
Wanna know when it's your second, your minute, your time
Sick of dreamin', wanna lay the pictures in your mind
Never been like all the others, you're one of a kind
I know you're feelin' like you wanna break free, it's a sign
Just wanna fly above it all, see where you can land
Know that you can do it on your own 'cause you can
Know that you can conquer all with a plan
Forget about the negatives buried in the sand
Yeah, never forget this is your life
Your path, your dream, this is your fight
Victory, you'll see, you'll be alright
Get through the darkness, on the other end is pure light

When I close my eyes I can see me flying home
High above the clouds
Swear I won't look back if I get the chance
Oh… I won't come back around
If I make it out this town, yeah…
Gotta make it out this town, yeah…
I'm gonna make it out this town, yeah…
I'm gonna roll the dice, and take a risk tonight
Gotta make it out this town

Have you ever felt alone like the whole world was missin'?
And when you prayed it seemed like no one was listenin'
You try to keep the faith and keep on livin'
But when you strugglin', the future looks distant
All your hopes seem to be just pipe dreams
And you really gotta wonder what your life means
That's when you gotta pick yourself up out the dust
Make a change and find a place in your heart to trust
You ain't always gotta take the first call to dough
In this life, only you can represent yourself
Never let your circumstances hold you back
You were born free, never gotta feel trapped
In the pursuit of happiness, you're gonna feel pain
But the only way to win is to stay in the game
The naysayers, they goon' try and embarrass ya
But I've learned that the struggle builds character

When I close my eyes I can see me flying home
High above the clouds
Swear I won't look back if I get the chance
Oh… I won't come back around
If I make it out this town, yeah…
Gotta make it out this town, yeah…
I'm gonna make it out this town, yeah
I'm gonna roll the dice, and take a risk tonight
Gotta make it out this town

Put your hands in the air now
If you feel it let me hear you loud
Put your hands in the air now!
Yeah, if ain't nobody gonna hold you down
Yeah, come on, come on...

When I close my eyes I can see me flying home
High above the clouds
Swear I won't look back if I get the chance
Oh… I won't come back around
If I make it out this town, yeah…
Gotta make it out this town, yeah…
I'm gonna make it out this town, yeah…
I'm gonna roll the dice, and take a risk tonight
Gotta make it out this town

The Quick Onset of My Infections

An example of how quickly my infections come on:

I am in my room putting on my makeup; I am not quite sure where I would head out to that night but the evening was young and so was I.

As I sit in front of the mirror primping myself and talking to my sister, I looked down at my foot and recognized a fiery red section of my skin. I felt a shot of adrenaline rush throughout the entirety of my body; here comes the anxiety. Most of us with KTS know the difference between the typical purple hues that are typical of normal KTS criteria as opposed to the crayola red ones. So, as I gazed at it, I am thinking this can go one of two ways: the skin will stay as is and no other symptoms will come along. Or, it would progress and I would be heading to the ER that night at Children's Hospital Boston.

Within the next hour or so, my current state of health declined exponentially. My foot was now in an incredible amount of pain, and I was deteriorating systemically. This was not atypical behavior of my cellulitis infections; most come on fast and strong. Mind you, this was all while being on oral Avelox for a prolonged period of time. I was taking it daily, and with that in mind no infection should have cropped up. Yet, it did, and next thing I know I was phoning my mom telling her that I needed to leave for the hospital as soon as possible.

And so we went. I was already depressed prior to going there, but once I was actually there and admitted I felt all the more horrid. I felt stuck in a repeating cycle that never seemed to end. It was as though I was spinning round and round on a merry-go-round and was powerless to get off. I know that I am not the only chronic illness patient that feels this way; I have talked to many others who feel similarly to I. Sometimes, you just have to be strong and push through despite whatever the odds may be, no matter how hopeless things may seem. I plan to write more tomorrow.

Are you a chronic illness patient? Do you ever feel stuck in "the cycle?" What advice would you offer to others going through the same thing?

Hope you are more than well, A

Hospitalization due to Cellulitis

Hey guys! So basically I am back in the hospital with a cellulitis infection but I have already been here two days. Prior to now, I have been too fatigued to update. The good news is that I think I am going home tomorrow! I will update more later this week. - A

UPDATE: Just a couple of random pictures from this hospital stay.

Well, technically, this was the night before! But it just goes to show how quickly an infection can come on.

My sheets after they placed yet another new IV because they all kept  blowing!

Skyping with my sister. That cheered me up so much!  I had no idea this as being taken!

New Pictures

Summer is here! Get out there and show some flesh and be proud of what you got. However, if it helps you, wear those stockings! I should be wearing mine all of the time. Baby steps.