Despite how it may appear, this site is not just dedicated to the trials and tribulations of Klippel. My intent, upon starting it, was to garner awareness and to document my story with this condition, whichever way in which the tides may have turned. A lot of my continual readers are used to reading about me in the midst of some form of medical chaos, as the vast majority of my life I have been.
These days, however, I have been outpatient for approximately a month and a half and in some ways it has been utter bliss and the reprieve in which I so desperately needed. However, my mind and body are not yet connected in spirit, and I am working vigorously on that. Sometimes the smell of something as menial as plastic will bring me back to a certain time in the hospital, or I will have a nightmare in which I am being rushed back in to the ER at 2:30 in the morning. Mentally, all of this has been rather taxing despite being on antidepressants and receiving talk therapy. Although, I have just really started up the talk therapy again in recent times, so perhaps it is not fair of me to say that. My psychologist is on vacation this week so I will not have a chance to meet with her until the next one.
However, speaking in terms of my Klippel, I attribute my current success as an outpatient to the Sirolimus in which I have been taking. While it may give me unpleasant facial and body acne in which I have never had prior, it has certainly played a vital role in stabilizing my health. I am due to write another “Sirolimus Diaries” entry soon, so if interested please keep an eye out for that. As of current, please know that I have not been this healthy (in terms of my Klippel) in quite a while and am savoring the moment. I am trying to become reacquainted with home life as I have a rather positive feeling I will be here quite longer! Until two weeks prior, I actually left a hospital bag packed with all of the essentials I would need in anticipation of another infection creeping upon me when least expected. That bag, the same old rusty one that has accompanied me on multitudes of inpatient stays, lays about 5 feet away from me as I type this. It is empty, and I am quite confident in leaving it that way, at least for now.
While I feel compelled to document my struggles with Klippel, I also feel a deep responsibility to record my successes as well. While each case of Klippel varies, perhaps it will give some parents, patients, and specialists alike hope in times of hardship.
Below are a few pictures of recent times. May you be well, and if not, embrace the inner hope within to stay strong and fight your battles. - Arianna