No Privacy For The Inpatient

I used to find it rather easy to write while I was inpatient. These days, not so much. My words seem to escape me, and I am rather shy in regards to my own feelings. Perhaps that is because every two seconds someone bursts through my door asking how I am feeling, or to have a peek at parts of my body in which it's not natural to show to a room inundated with strangers. Over the years, this can certainly take its toll on a person (I would know!). Sure they have doctors' badges on, but aside from that, they are merely strangers. I do not know them in a personal manner...and outside of the hospital I would never pull down my pants for someone I just met. It would be absolutely...ludicrous of me to do so. Yet, some man or women has doctor identification on and I just allow him to see all of my private parts as though there is nothing amoral about it? In regards to medical purposes, I do not find it amoral. Yet, as a young woman, I find it somewhat emotionally violating as I grow older. I have never given the doctors problems as far as seeing my wound areas and other private parts of my body, nor have I ever been that uncomfortable with it to the point I would not allow it. Yet, it contradicts who I am outside of the hospital so greatly. I would never slip down my panties for a stranger I just met while outpatient, yet I am all too willing to do so while inpatient. The things we do in the name of medicine... ; ) It is, to me anyway, quite bizarre to ponder.

I think between feeling vulnerable in that manner and in terms of my other emotions, I cherish and consider sacred what I am able to keep inside. What I choose not to reveal almost becomes a weapon of sorts, one in which to fight all the vulnerability I am exposed to on a constant basis. While inpatient, privacy becomes sort of a rare delicacy...

It Happened That Night

Hey guys! So once again, I am writing this while inpatient at Children's Hospital Boston. I am currently here due to another cellulitis infection which initially began Wednesday evening. It was around 9pm that I awoke to a tremendous headache, scorching pain in the left buttock of my KTS area, a fever and a slew of other worrisome symptoms. As many of you who deal with these infections know, the onset of one is hardly pleasant. Since my pain was not yet out of control, I talked to my mom and dad and we decided to check in about how I was doing in about half an hour or so. I think we all knew that it was only a matter of minutes before I would be on my way to the ER, though. Still, I fought to remain optimistic in my mind while all of this was going on. I tried to convince myself that the pain may not get worse, and that I could perhaps hang on until tomorrow when my primary doctors were in and I would not have to go through the whole ER ordeal. However, the pain got substantially worse over the next half hour or so and suddenly it felt as though various steak knives were being jammed into my left buttock – it's a pain so intense, so deep, that I shudder when merely thinking about it. At that point, the hurting was unbearable and my mom and I were out the door to the ER in no time.

Emotionally, this was a rather hard experience as well because I had been taking Keflex twice daily at 2000 mg (a preventive dose Infectious Diseases put me on after the severity of my last infection). Once again, my body was breaking through yet another medicine and it was not only disheartening, but scary , too.

Perhaps this is the real kicker, though: For the past three weeks leading up to that infection, I had not been able to walk on my left leg due to severe pain that started at my frontal thigh area and stretched down past my knee cap. Throughout this time period I was in contact with Dr. Trenor and Dr. Fishman, but Dr. Alomari was out of town and I knew he would be a key component in getting to the root cause of what was causing me not to walk. So, just earlier that day (Wednesday), I had been at Children's and had a somewhat lengthy doctor's appointment with Dr. Alomari (who had just returned from his time abroad that day) in regards to this new and very problematic area. He ultrasounded my leg, and within minutes was able to diagnose me with “acute thrombophlebitis.” To treat it, I would have surgery on Monday, February 24^th in interventional radiology with Dr. Alomari. I came home from the appointment incredibly fatigued, so off to sleep I went. Little did I know my body had a bit of a surprise in store for me just a couple of hours later...

So, as I rode to the ER the night of the infection, I was not only dealing with the sensation of stake knives going into my butt but the pain from the widespread thrombophlebitis as well. Between not being able to walk nor sit, making it downstairs to my car proved to be quite an obstacle in itself.

Anyway, I am now here being treated with three IV antibiotics and go for surgery tomorrow with Dr. Alomari. The teams are doing a fantastic job of providing me with great pain relief, and everyone is so incredibly friendly! While the redness in my buttock has certainly gone down, it is still rather uncomfortable which tells me this infection will not be a quick one to treat.

I will update more soon! If you have any questions, please feel free to leave a comment below and I will be glad to answer it.

Below are recently taken pictures of the area with Thrombophlebitis.

I got to spend some time with my younger sister tonight too which was so incredibly awesome! I love her to pieces. Here is a picture of us from a mere few hours ago.

I will be in touch very shortly! Wishing you all well. - A

& To the Store We Went

Allow me to preface this post by acknowledging that something rather atypical has been happening with my upper KT veins as of present. I have been in touch with the lovely Dr. Trenor and hemotology nurse Jenn, and they have been incredibly helpful. However, to get to the root of the issue, I am awaiting Dr. Alomari's return on the 18^th of February. Perhaps I will have improved by then, or perhaps not. That, however, is beside the point.

My elder sister and I have not always had the most amicable of a relationship. She is a rather lovely girl, one who is incredibly level-headed along with book and street smarts. She is physically beautiful, and is known as friendly to those who cross her path. While we used to be incredibly close as children,  our dynamic drastically changed as we both entered our teen-aged years. Suddenly there was vicious name calling and heated arguments, all elevated by my constant medical upheaval.

Now, she is moved out of the house and married to a lovey man who is also worthy of great praise. I was not quite sure how our relationship would pan out following her leaving, but I was sure it could not get much worse. And, much to my delight, it has grown stronger and we are more compatible than we've been in several years.

Yesterday, she stopped by the house while I was in great agony from my previously mentioned abnormal Klippel pain. I asked her to take me to Target, to which she first replied she did not feel like going. I, however, had not been out of the house in days and was tired of feeling alone in my bedroom while withering away from pain. Nobody else would home to take me out until the next day, and I was desperate to leave my all too familiar surroundings. “Pleaaaaaaaaaaase,” I pleaded. “Fine,” she said, and suddenly a smile occupied my tear-stricken face. Taking me places is not very easy these days as I require some form of mobile assistance like a wheelchair or electric scooter. Still, she was willing to take me and that in itself meant the world.

Off we went to Target, and she assisted me with things like putting my items on the belt and lifting my bags for me when we got home. I was so sincerely appreciative as I never want anyone to feel as though they have to do anything for me... the last thing I want to be is a burden, so to speak. And, if I'm being rather honest, I quite often feel like one to both my family and friends alike. Although she didn't feel like going to the store, she put my feelings first and that in itself meant the world to me. Sibling relationships are incredibly sticky to begin with, but adding a chronic illness to the mixture is just extra, well, complexity. Yet, with understanding and consideration on both sides, they are hardly impossible and can be rather fulfilling. Despite our past arguments, we always have home in common. Also, she has seen me at my ugliest and is still willing to hang out with me. Now that in itself embodies the concept of family ; ) - A

Picture from before Surgery

Hi my loves! I apologize as I have not been writing on here as often as I am accustomed to - I keep trying to write, and then seem to lose direction in my scripts; it seems as though I am going through somewhat of a massive writing blockage at the moment. I attribute this to how much I currently have going on medically and emotionally. Although I have been out of the hospital for almost a month now, I am still dealing with a great deal in regards to my KTS and the emotional residue that accompanies it. Because I am in the midst of dealing with the chaos, I do not quite know what to make of it just yet. Basically, for me to analyze the situation in words is extremely tough to do at present; I am still adjusting myself and do not know what to make of it.

In the meantime, though, I have a picture to share with you guys. This is a picture of me getting wheeled into surgery approximately three weeks ago while I was inpatient for a cellulitis infection. Dr. Alomari spearheaded the procedure - perhaps that is why I look so incredibly content and, well, unfazed by what is about to happen. Aside from the fact that it was a rather simplistic procedure, I trust this particular professional with my life immensely. The four leaf clover in which I am holding was a gift from my dear friend Jeni who had visited the night before. I appreciate her more than she even could know! - A

A Worldwide K-T Support Project is Being Launched Now!

Hey everyone! At current, I have a great deal happening in my life both medically and personally. I will be posting in regards to these matters very soon. However, this post is going to be about an incredibly awesome project my great friend William Lee is spearheading for the KT Community!

Here is how he has explained the project, in his own words:

Announcing a worldwide K-T Support Project! 

Imagine all of us submitting for publication in a world-class Coffee Table-Top Scrapbook an engaging photo or two along with a brief message or even a synopsis of our life to date. This will be a child’s dream book; and for us adults a comforting memory that we are not alone. 

We are doctors, attorneys, paramedics, psychologists, patient advocates, mothers, fathers, professional golfers, popular musicians, artists, entrepreneurs, motivational speakers, researchers, teachers, engineers, mechanics, race car enthusiasts, radio personalities, students, and so much more. 

Look at the world map on the Facebook page for k-t.org. It demonstrates just how global a family we are. It’s simply remarkable. 

Every K-T Kid in the world will now have a ready reference book that surely lets them know they are not alone and all things are possible. PLEASE join us. Help us to celebrate our wonderful Klippel-Trenaunay Family. Help inspire generations to come.

As many of you know, I journal using the wordpress.com blogging site. My site is called "Seen, yet Not Heard". This scrapbook project is sponsored by k-t.org and managed through my site. More detailed information can be found here:http://williamantonlee.wordpress.com/kt-scrapbook/.

I set up a special email account to handle communications, providing a method to keep traffic less congested on the blast email server which uses listserv. 

Please email me at: seen.yet.not.heard@earthlink.net 

Once we have a better idea of participation we can estimate the cost of the publication. It is our intent to price it as low as possible; basically to cover costs. Additional proceeds will go to K-T Support.

*****

Talk about a dream come true! I am so excited to see this project spring to life and am very grateful to my companion for his zest and ideas in regards to helping others with this condition. William also has his own blog in which he writes about life with his Klippel-Trenaunay Syndrome. Click here in order to be directed to the home page and don't forget to contact him if you would like to be a participant in this incredibly great project. 

To read more about the project, please read William's post about it on his personal blog here. If you want to know more about the project and/or are considering being a participant, I highly suggest you read the incredibly informative post. 

Hope you all are well! - A