Current KT Problem: Foot and Ankle

If I am guilty of anything (in terms of this blog,) it is posting too much material within too short a period of time. However, there has been a lot going on as of recent and a great deal of happenings to post about. While I have been writing about the Sirolimus (and my decision to halt it, at least temporarily), tonight I will be focusing on a different matter related to my KTS.

At current, my ankle and foot are terribly swollen and in a great deal of pain. Based upon the feel of the skin and where the redness in (in a vertical manner that can practically be mapped out), my mom and I surmise that the current issue may be a case of thrombophlebitis. The Ketorolac I have at home has not been working, and I currently have no pain relief available... As far as heating pads and ice are concerned, any pressure that touches the area is terribly painful. I soaked it in hot water earlier, and that was fine. All in all, though, the pain, redness and tenderness remained the same.

Today, I spoke to Cindy, one of the most incredible nurse practitioners I have worked with in the past and present. She works in the IR department, and is often described as Dr. Alomari's right hand person. I asked her if he was in town (as I know a multitude of Dr.'s had been away at a Vascular Anomalies conference in Australia) and was delighted to find out he was back from his trip. With that said, my dad will be taking me to see him tomorrow and we will figure out how to proceed from there as walking on my foot is currently incredibly painful (along with the ankle).  

Below is a picture of the problematic portion of my KTS limb at present (it was taken in micro mode, with the flash on).

I will update on how my appointment went at some point tomorrow.

Arianna

Why I Stopped the Sirolimus: Part 2

What I am about to write on here is rather risque in content, but in order to begin to help readers understand why I stopped taking the Sirolimus, I feel it's vital to share this information... It is a passage derived from my own personal diary, one in which I swore I would never share with anyone. It is not modified in the slightest, and was copied and pasted directly from my own personal document. At the time this was written, I had been on the Sirolimus for a little over a month and was off the anti-depressant that had been helping me so greatly with my depression since I had started it (Viibryd). However, I was forced to come off this particular anti-depressant because it interacted with the Sirolimus, and reverted back to one that had helped me minimally in the past (Prozac). We (my doctors, family, and I) were quick to make the decision to wean me off the other anti-depressant in order to start the Sirolimus pronto, as my Klippel was undeniably out of control. At the time, it was my only hope of achieving medical stability. However, after a couple of weeks of taking the Sirolimus, I felt myself regressing back into a profound state of depression. The medication in which I was weaned off of was the only one that had given me a true respite from my depression in quite some time. So, with that said, here is a passage from my own personal diary, written during one of my all-time low points (while taking the Sirolimus and Prozac). Please pardon the foul language, as this was not initially intended for anyone to see. I am actually rather embarrassed to share it, but honesty genuinely is my policy on here.

Disclaimer: I am much more mentally stable than when I wrote this particular passage, and I am safe. By no means am I in danger of hurting myself. As I said prior, I am in a different state of mind than when I penned this particular piece of writing (or ramble, rather). If, however, you ever find yourself feeling anything like this, talk to someone immediately. Depression is manipulative and wants you to keep these feelings internalized...it does not want you to ask for help. If you ask for help, then the depression loses some of its power... In order to overcome it, though, it is of the utmost importance to seek help through a trusted family member, companion, or professional. 

April 10^thI don't really know what to type...I am depressed beyond belief. I just need someone to sit with me and listen to me blubber on for hours on end until I get all of the tears out. How did I become so incredibly f***** up? What happened to me? I finally am acknowledging my extreme and severe feelings of loneliness. It's not easy, f*** it's not. I feel lonelier than ever. THAN EVER. I HATE MYSELF. I HATE MYSELF, I HATE MYSELF. THE HATE CONSUMES ME. I'M SO TIRED OF ALL OF F****** THIS. I AM QUICKLY BUT SURELY TURNING INTO A F*** UP, BUT I AM TRYING TO TURN ALL OF THAT AROUND. STILL, I HATE MYSELF, EVER SO DEEPLY. THIS IS A HITLER TYPE OF HATE IN WHICH WE ARE SPEAKING ABOUT. HOW DID I GET THIS WAY? WHAT THE F*** IS WRONG WITH ME? SOMEBODY HELP ME. SOMEBODY, PLEASE. I NEED TO BE SEDATED RIGHT NOW, I NEED THAT. I CANNOT DEAL WITH ANY OF THIS, I AM FALLING TO PIECES. THERE IS NOONE TO TALK TO. PERHAPS THE SCARIEST THING OF ALL IS THAT MY PLEAS ON HERE WILL NOT BE HEARD TO ANYONE.

In retrospect, it is awfully hard to believe that less than a month ago it was me who not only wrote this, but felt such horrific internal agony in which I resorted to writing such deeply demeaning words towards myself. Since resuming the anti-depressant in which I was weaned off of, I am beginning to feel much better mentally and emotionally. I still have plenty of days and times in which I feel low, but I do see the light at the end of the tunnel; I'm beginning to find beauty in even the most simplistic things in which life has to offer again, like the vast beauty of the fluffy white clouds in the sky.

Again, there is a lot more information in which I need to share with readers in order for them to comprehend my stopping the Sirolimus (at least for now). While I was on the Sirolimus, it definitely worked some medical wonders and I will be writing about those as well. I'll be writing more in regards to this matter soon, so check back if interested in reading more about my decision to stop this medication. 

Questions? Feel free to ask in the comment section. I will do my best to answer all and any in which you many have.

Lots of love, Arianna Helena

My Responsibility as a Klippel Blogger

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