Food for Serious Consideration...

"*I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do*." -Edward Everett Hale

- A

Why I Have the Best Interventional Radiologist EVER

Hello everybody! Earlier this week, I had an unplanned (unless you count the day before as having planned...) surgery in which Dr. Alomari once again performed his unrivaled magic. For those of you unfamiliar with his name, he is an extremely talented interventional radiologist at Children's Hospital, Boston. For the past couple of months or so, my Klippel-impacted foot had become almost impossible to walk on. I was on blood thinners for it -Lovenox- but to no avail as the extreme swelling and pain ultimately remained. Dr. Alomari had ultrasounded the area not too long ago, and determined that a slew of clots were stuck within a veiny region that spread throughout my foot. Sometimes, he said, these cause no problems for patients pain wise; when this is the case, operation is not usually necessary. However, in my case where they were causing me a momentous amount of pain, there was nothing left to do but operate. The alternative would be living in great discomfort for the next several months while the situation resolved itself – no thanks!

A couple of days prior to the surgery

So, Dr. Alomari performed the surgery flawlessly. Essentially, what he did was made a tiny incision in my foot (I didn't even need any stitches, that's how small it is) and squeezed as many clots as he could out from there. Look below to see what he was able to get out! Pretty incredible, right?

My foot has already returned near back to its normal size previous to all of this clotting hoopla that erupted several months ago. I could not be more pleased by the results and this is just yet another testament to how grateful I am to have Dr. Alomari as one of my doctors. He is, without a doubt, the best of the best. - A

P.S. I will update soon with a picture of how my foot looks now!

Catching Up

So much to catch you guys up on! I have been inpatient since Tuesday, and since then have had two surgeries as well as a cellulitis flare-up occur within that time period. At the moment I am well, just in a great deal of pain due to my surgeries despite all of the pain medications I am on.

I don't want to write everything in one long post, so I will be spreading out the next few posts summarizing about all that has gone on throughout my time here the past several days. At this point in time, the surgical resident is saying I should be able to leave Monday – at the earliest, anyways. So naturally, I am going to try my hardest for Monday. I come from a close-knit family and not being able to go home with them at the end of the day is really tough on my heart. One of the hardest emotions to deal with while I'm here is that of homesickness/loneliness. 

Anyways, before I get too carried away on this post alone, I will leave you guys with a picture of me and my sister from when she visited the other night. I miss her a great deal and she always helps to cheer me up whenever I am in here. The picture below was taken in the recovery room just after my first operation.

Stay tuned, lots more to come! ; )

XOXO - A

We'll be Alright

At that point, I was feeling as though everything was so utterly hopeless. “I swear to God if you guys don't pull the picc line out I'll just pull it myself...,” I told the emergency room nurse. At that time, there was talk of the picc line possibly being infected. We (as in me, my mom and the team) really didn't know yet, but were grappling with a few different ideas as to what was wrong with me. However, having just come out of the hospital three days ago as an inpatient for my biggest infection thus far, it wasn't too hard to presume I was still healing.

Ultimately, that's all it was. My body was still incredibly dehydrated, and my blood pressure low. Eating was almost nonexistent as the nausea was too intense. The infected area still held a great deal of hurt. I was also still grappling with a clot that extended from the back of my ankle to my toes (and still am, unfortunately).

At that point in time, I would be lying if I said I wasn't suicidal because I absolutely was. “Do you struggle with depression, by any chance,” the ER nurse asked me. My holding room sheets and pillow were soaked from my relentless crying, and it seemed as though the tears massaging my face were limitless. Everything felt so incredibly deranged and hopeless, and the future seemed bleak at best.

It's not the first time I have felt like that; far from it, in fact. However, being sick just exasperates those feelings for me, so I have found. I'd be lying if I told you that each and every day wasn't some kind of an emotional struggle at present, although I do my best to hide it around many. It is, though, but I am still here and ultimately that's what counts. And I am still receiving help, even though that means continuously letting my guard down simultaneously to people, from those in which I know very well to those who are complete strangers. I know I am far from the only one who has gone through such a struggle; the reality is that it sucks, plain and simple. But if I had to give anyone advice, (who is in a similar situation) it would be to open up to the right people around you about how miserable you are feeling. Depression wants to isolate you from people, to have you keep your feelings internalized which only gives the illness more ammunition to hurt you. Speak up and seek help if needed and gain back the upper hand! Sometimes, I look up at the sky and clouds and realize that there is something out there much bigger than I, and that there are things happening to me for reasons in which I do not yet know, for reasons in which I am not yet meant to know. Keep up the fight, and in the end I think you'll see we will all, indeed, be alright. - A

I'm Back

Since I last updated, I was admitted to the hospital again because I was having a hard time recovering from the last infection. It was not the infected area that was hesitant in recuperating, but rather my body as a whole. I felt so incredibly weak and nauseous among other things. I was severely dehydrated and not eating. However, I am doing much better now and I figured I would kick off this post with a new picture of how my C02 lasered area healed (as some of you may recall I had this work done by Dr. Alomari in June).

Below are before pictures (just a couple of days after surgery) and now. I'll update more soon.

- A

Heartache

My problem is that I want to inflict good upon others but cannot effectively do so until I am in a place of wholeness and wellness myself. The journey to getting there seems to be intolerable, and I feel as though I am held captive in a pit of circumstances that are of my own doing. Those words are, indeed, important: my own doing. Depression will try to tell you that.. Tell you that all of the bad things that have happened to you are a result of your own unworthiness, and that you deserved for them to have happened to you.

Truth is, I didn't choose to be born with a debilitating illness that has plagued not only me but my loved ones. But, inside, there is a voice that tries to tell me maybe I did.

After 16 days in the hospital, I was released. I am far from well, but I felt I could handle the thunder on my own. Or maybe I didn't, maybe I just hoped against all odds. These past hospitalizations have caused me to miss so many significant days, like my mom's 50^th birthday. Do you know what my mom did on her 50^th birthday? She cried, and it was over me. That day I woke up in the hospital and got extremely sick with the worst cellulitis infection I've had thus far. I know there was chaos, and lots of medical staff, but that's not what sticks out in my mind; no, all I remember amongst the blurred vision from tears is seeing my mom cry. It stabs me in the heart. I missed my parent's anniversary and father's day, too. I don't care about my own satisfaction I just want to help others who have been victimized by my condition be well, to live as though it didn't exist.

So, I went home after 16 days inpatient. Not 18, 19, 20, but 16. And, I would do it all over again for my sister. I went home because yesterday was her birthday (and my dogs!). She kept saying she didn't care if she had a party, but I knew she did; she just may not have realized it. I only made a small appearance at her birthday, but I know she was happy and did have some much needed fun. Me being in the hospital, after all, greatly impacts her life too and she has been exposed to harsh realities younger than some of her peers. Even though I am sitting here in so much pain and feel so feeble, I would come home again a thousand times over for her and her happiness.

I just want to help everyone be happy.

15 days inpatient

I am currently still inpatient at Children's Hospital Boston because of the ferocity of the cellulitis infection I endured several days ago. I believe today marks my fifteenth day here thus far - just from this one admission. Basically, I am dealing with a massive clot in my foot and a widespread cellulitis infection in my left buttock. Never before has an infection caused me this much pain for this amount of time. The longevity of this infection is what makes it unique from all the others ones I have had thus far. Dr. Fishman, who I saw today, said this is the worst infection I've had yet and it will take a long time to return to baseline.

However, I have made heaps of progress and should be going home any day now (with picc line in tow, of course). My blood pressure is stable as is my temperature, and we have gotten the pain under control. I am even starting to walk with ease all by myself, something in which I was not sure I'd be able to do for a long time again!

With that said, I still feel crummy overall; fatigue and pain are rampant throughout my body. I must say though, I a very proud of myself for coming out victorious despite the events that have occurred in the past couple of weeks. I know I will continue to progress and I look forward to catching a glimpse of summer once I am released from here.

Hope you all are well - XOXO
-A