The Ugly Truth

I recall the days I used to sit huddled in the corner of my home bathroom crying my eyes out – it wasn't because I was in pain from my KTS, either. Truth is, at that time, I was in a great deal of pain from my KTS, but that was not the main issue on my mind. When I was home from the hospital and in high-school, walking down the hallway in-between classes and using flights of stares was enough to evoke a flood of pain. Yet, that wasn't all too significant to me... what really mattered to me, as I touched upon in previous posts, was how I perceived the way in which I looked on the outside. I hated my appearance so much, that at times it was all in which I could focus on within my head... The only real distraction, I suppose, was doing my schoolwork in isolation. Perhaps that is why I got such remarkable grades, especially for a person who was forced to miss school as often as I was. Yet, whenever I found myself in a throng of people, my head went into a complete tizzy. “Why can't I have hair like that girl? Her nose is so much better than mine. I'll never be able to prance around in a cute skirt like that. Why couldn't my eyes be a striking blue or at least hazel? I'll never have any of that. No one will ever want me. I'll never have that perfect life.”

I guess I should note that at this time, not only was my leg expanding in size tremendously (compared to how it was in size when I was a child) but that I had also developed blebs in my genital area (more toward the inside buttock). These areas caused me so much pain on a daily basis, that much I can tell you. When placed under water, they would sting immensely. When I had pants on, the material would rub up against them and cause them to get irritated. I still get these blebs periodically, and have a surgery to remove them once they are ingrown about every two years. They are terribly uncomfortable, and for a while I carried around so much shame associated with these tender areas. I felt like I was not worthy enough for any guy to ever want to be with me...

So, as I touched upon in the last post, I felt the need to overcompensate in regards to other aspects of my appearance. I hated my eye color, so I changed that with the ever so fake looking colored contacts. And, by the way, this is not to demean anyone who wears them! Most of the time, though, I just chose colors that looked awfully unnatural on me. I died my hair probably every color in the book. The one good thing, I will say though, is I never had an eating disorder or worried about my weight. However, in terms of all other revenues related to physical appearance, I was constantly trying to achieve perfection. Still, I wasn't satisfied no matter what lengths I went to to altar my physical appearance. I didn't understand that there was more to this obsession...

One time, I remember getting all dolled-up for an event at my Grandmother's house. I had been looking forward to going, as I always enjoy time with my family immensely. Yet, at one point, I looked in the mirror and thought there was no way I could be seen like this. I remember I was dressed in a gray sweater, had my blue colored-contacts in, and was sporting a full face of makeup. Still, I felt so incredibly...ugly. I felt ashamed of myself, and like I needed to come up with a plan to be “prettier,” so to speak.

I lied to my parents and told them my leg was hurting and that I really just was not feeling well...they had no idea what was going on at the time in regards to how atrocious I felt inside. Nor could they or anyone else, it was perhaps my best kept secret back then. I wish I could say my Grandmother's house was the only time in which I did that, but it was far from it. I used to shower four times a day, not only because I was petrified of bacteria and constantly feeling dirty(stemming from my overt OCD, undiagnosed at that time), but because I also thought I was washing away some of the ugliness that occupied my body. Eventually, all of this internal frustration turned to utter shame and I was not forced to acknowledge these issues until I had a full-on breakdown at the age of 18 in which I could not stop hysterically crying for several weeks period prior to an antidepressant.

Now, I still struggle with this stuff to degree. As I wrote in my last post, the mild acne onset from the Sirolimus was enough to merely cripple me emotionally. Yet, here I am, still dealing. Now a days, as a way of practicing exposure therapy, I run out here and there without makeup. I try to take pictures of myself without makeup, where I have my natural light brown hair and clear-colored contact lenses. My natural beauty is something I try to cherish, and perhaps more importantly I realize it does not dictate the rest of my life.

So, who wants to see a picture of me in a far from perfect state? I took this upon waking up this afternoon, and I am not wearing any makeup and clearly my hair is, well, you can see for yourself...hahaha

I consider small things like this to be exposure therapy.

Until the next post, Arianna

The Sirolimus Diaries Update # 3 "The onset of mild Acne"

This is my third installment of this series. To see the series in its entirety thus far, please click on the labeled tab “sirolimus” to the right.

Since I was around 13 or so, I was always incredibly self-conscious of how I looked on the outside. I think that I viewed my leg as somewhat of a flaw, and felt that I needed to compensate for that flaw for making the rest of myself look “meticulous”. I began wearing makeup, dressing in the “appropriate” socially accepted clothes, and spending ridiculous amounts of time straightening my hair. Now, some of you reading this may think “well, that's not so atypical behavior for a 13 year old girl...” and it wasn't, really. What is, however, was the significance in which I attached to these habits. A stray hair out of place made me feel as though I was “ugly” as sin. In psychology, there is something called “the spotlight effect.” The spotlight effect is essentially when you feel as though all eyes are on you, when in reality they are not. We feel as though our lives are placed under a giant microscope, and that everyone is picking apart every aspect of our lives. This term has definitely been applicable to me for the past 10 years or so.

Anyway, I was blessed to have decent skin that hardly ever broke out...I can probably count the number of times in which I have had a pimple in my entire life on my one hand. I was pretty fortunate, and I watched my older sister struggle with moderate to severe acne for an array of years. To this day, she still struggles and sees various doctors and takes medications to help keep it under control. Her plight was not one in which I could even fathom having myself... my leg was one thing, but my face was another. I get how ridiculously shallow that sounds, I promise you I do. And as far as my sister is concerned, she is a stunning girl inside and out...with or without the acne. Also, I admire her strength for she faced the world so bravely despite her condition. With my leg, I could always cover it up when I wanted to, but clearly one does not have that luxury with their face...

How does this have to do anything with sirolimus, you may ask? Well, a couple of weeks ago I started to break out on my face in a way in which I never had before. For someone like me, it was absolutely terrifying. It was as though my overall appearance was being attacked, and it drove me into a frenzy. Now, when I am rational I can see this problem for what it truly is: a few blemishes scattered throughout my face. There are bigger things in life, much bigger things. There are people with life-threatening issues at this very moment, people who have just lost a loved one. Essentially, people who have much more significant issues than a mere few blemishes on their face.

However, there is a rather irrational side of me when it comes to my appearance, and that is what has mostly shone through these past couple of weeks. Again, I believe it stems from my own insecurities in regards to my leg and feeling the need to overcompensate because of it...

I went to see Dr. Trenor and his lovely nurse Jenn a few days back and had them look at my skin. Even with my layer of foundation on, the bumps underneath it were apparent. I felt so defeated....I wanted to crawl into a cave and never come out again. I felt so insecure, and as though I was pretty much worthless... How horrific, right? If this were anyone else, I would never tell them to think in such a seemingly ludicrous manner...I would tell them that their inside is what dictates their beauty. Yet, when it comes to myself, I am so fragile inside and insecure that I am unable to do that (at current) which saddens me greatly. Anyway, the mild acne is not something that will go away on its own. It is a side effect of the sirolimus, and that is why Dr. Trenor and his nurse have been so incredibly persistent in helping me to get an appointment with dermatology. I have not yet got a call from the dermatology department, but I expect to be getting one any day now. In regards to the mild acne (in which I also have on my chest and back) Dr Trenor and Jenn have been so incredibly understanding of my emotions... For now, it is a side effect in which I will have to deal with until the dermatologists get involved and help correct it.

As far as other side effects are concerned, there is not many to be spoken of at this point in time... I am beginning to notice a little less rectal bleeding however the change has not persisted long enough that I can say this will be a permanent reduction attributed to the Sirolimus. I am sleeping a great deal, and seem to be coughing and sneezing (along with having watery eyes) more than ever before. I have never been susceptible to allergies, but perhaps I am now due to the medication.

I take the Sirolimus twice a day and the bacterium (to prevent pneumonia from the weakening of the immune system) three days a week.

Below is a picture of some "blebs" we took while at the appointment with Dr. Trenor. These are on my thigh and therefore can make sitting rather uncomfortable. Also, one of them leaks out lymph fluid quite often which always makes me paranoid in regards to infection.

As always, please feel free to leave any comments and questions below; if you are not comfortable leaving them here, feel free to send me a FB message on my private facebook. I can be found under the name of Arianna Helena.

Until the next blog post,

Arianna

Update on Mental Health Petition for BCH

Hi lovelies! I have so much in which I want to share with you guys... unfortunately I will not be able to do it within this one post. However, this post is certainly a start, anyway!

Perhaps you remember the petition I initiated a few months back, the one where I wrote about the need for the VAC Clinic at Children's Hospital Boston to have an informed psychologist as part of their staff. As a well seasoned doctor once told me, 

“what good is it to have a patient who is physically healthy if they are so emotionally wrecked inside that they are unable to get out of bed in the morning?” 

Chronic illness and depression practically go hand in hand, but with proper treatment from trained professionals (as research demonstrates) one can indeed live a life engulfed in prosperity and jubilation.

The reality is, though, that the mental health portion of this condition is largely ignored. In result, a great deal of patients struggle with hefty amounts of depression, anxiety, and other disorders that can be utterly crippling. No one should have to live life that way, yet so many people with Klippel do as they are unable to find the proper help in regards to dealing with this condition (and, unfortunately, there is not much available). That is why I asked Boston Children's Hospital to step in and, well, step up.

I sent my petition to Dr. Fishman recently and was so touched by how responsive he was in regards to this matter. He agreed with my reasoning wholeheartedly, and was willing to help me fight for this cause, as he too believes it in very deeply. For those of you who have not met Dr. Fishman, I will tell you this much: he is a phenomenal human-being. Aside from being incredibly skilled as his work, he is a fabulous humanitarian that genuinely cares about the needs of other people.

I am not quite sure he would want you to tell me this, but he can get pretty emotional when it comes to his patients. At the last meeting, he cried when he saw images and what not of how much Sirolimus has helped various patients of his; I know this to be true because he told me when I ran into him the other day.

Back to the petition, though. Dr. Fishman sent out an email to an array hospital leaders. He also had a 45 minute meeting with the Chief of Psychiatry, David Demaso. Dr. Demaso now wants to have a meeting with me in regards to this matter, and is very receptive in helping to find a tangible solution to this problem.

Had Dr. Fishman not been so active in spreading the word about my petition (along with being incredibly supportive and giving me the courage to believe in myself), I would not have this astounding opportunity to meet with such a high-ranking Dr. within the psych. Department. Dr. Fishman and Dr. Demaso are incredibly willing to implement the change in which is so desperately needed in order to give VAC patients the best all-around care possible.

So, basically, change is immenent people! ( : This is fantastic news for patients/family members of patients of Vascular Anomalies patients at Children's Hospital Boston. I will keep you guys updated as to how my meeting with the highly-esteemed Dr. Demaso goes! I do not yet have an appointment set up with him but plan to make one tomorrow.

To read my previous thoughts on this matter, please click here to read my Calling You Out BCH Post I did several months earlier
Also, click here to ready the petition I did

Below is a picture of Me and the lovely Dr. Fishman at the KT Conference approximately three years ago. Unfortunately my eyes are shut in it! : (

More soon, Arianna

And then She turned 23

The 19th of March was my birthday! It was an awfully special day for me as I got to celebrate with some of my family who has been there for me through it all! These are the people who have been by my hospital bed throughout my entire life, and the ones who've repeatedly held my hand as I maneuvered around in the dark trying ever so desperately to find a ray of light... they helped guide me to that better place and for that I am eternally grateful. So, my birthday is really not about me whatsoever; it is about the people who have gotten me to this age and given me the opportunity to thrive despite life's difficulties. If I could, I would buy each and every single one of them a present, as they truly deserve it! Although, it is impossible to pay back those who have given you the immaculate gift of life. For now, expressing my sincerest gratitude will just have to suffice! Below are some pictures from the night of my birthday. - Arianna

The Depression After the Storm

Many people who have just gotten to know me recently may find it rather challenging to grasp what I am about to tell you. Or, perhaps given your own experiences and expertise on the subjects of mental health and chronic illness, you won't. Anyway... Often a time, I come off as a rather vivacious and spirited individual who has a deep zest for life. At my best, I like to think this is indeed true and that my volition to live is what has gotten me through so many tumultuous medical episodes (aside from competent doctors and luck, of course). I fought, in essence, to keep fighting. There were ample times I wanted to give up, but I fought like hell to keep pushing forward.

The truth is, however, that I struggle a great deal with depression and anxiety, not unlike a lot of chronic illness patients. I have been rather open about this in past writings, and it is not something in which I am ashamed of in the slightest. I have clinical depression and OCD, and to me they are illnesses just as real as that of Klippel-Trenaunay Syndrome. They are fueled by a chemical imbalance, and that in itself is nothing to be ashamed of. Just because conditions of these kinds are concealed to the naked eye, does not make them any less earnest and/or real than pan-optical conditions or diseases. In the past year, I have spent so much time focusing on my Klippel-Trenaunay Syndrome that I have let my mental health (regrettably, but understandably) fall to the wayside. It was not my intention for this to happen, but life intervened and often I was not able to make it to weekly appointments as I was either in the hospital, had just arrived home from the hospital, or was recovering from a surgery. Other times, during my brief "off" periods from Klippel, I just wanted to rest and not talk about things that were disconcerting to me. The problem with not processing these feelings, however, is that they build up in a deeply residual manner until it becomes nearly impossible to cope in a healthful way.

So, I now find myself in a position where I have to take action or I will crumble into a million little pieces. I feel like I already have, at least on the inside. On the outside, however, I appear well put together and can always muster up a grimace. On the inside, I have been deeply struggling and know I am regressing mentally despite taking my antidepressant on a daily basis. It's time for me to acknowledge these feelings and address them directly, because it is just as important as treating my Klippel. So, today, I am going to call my therapist and ask to meet with her three times a week as one is certainly not enough. The thing about depression is that it doesn't want you to ask for help, it wants to isolate you and keep you feeling disconnected from everything and everybody.

While my depression and anxiety has never gone away since I first started dealing with it several years ago, it became more bearable through a great deal of talk therapy and medication. Right now, I am in the midst of a flare-up and it is rather frightening. However, I hope that by acknowledging my current state and addressing it, I am on the right track to being in a better place mentally.

Never be scared to ask for help. Never feel as though people will look down upon you if you do as that cannot be further from the truth. Never retreat as things can get better. As I sit here, I do not feel as though things will get better. That is my depression talking, and I have to know that despite how I feel, it is a FACT: things will get better. Facts are facts, and they override feelings in situations akin to these. They have to.

Sending you all so much love. - Arianna

The Sirolimus Diaries Post #2

Hi everyone! I apologize as it has been a bit over a week since I last updated this particular part of my blog. As I mentioned in my maiden Sirolimus Diaries post, I will be updating in regards to my experience with this medicine on a weekly basis. Taking a medicine of this nature is certainly new territory for me; as trite as this may sound, it is my only beacon of hope at this point in regards to my seemingly unappeasable Klippel-Trenaunay Syndrome. I have now been home from the hospital a little over 2 weeks, and that in itself is something to celebrate. Typically, I end up inpatient again right around the 2 week mark. Whether or not this can be attributed to the Sirolimus or is merely good fortunate is a distinction in which I am unable to make.

Although the official trial period of using sirolimus to treat complex vascular malformations has just ended about a month or so ago (it lasted 2 years in total, I was not a part of it), there is still much to learn about this particular drug and how it can potentially be of great use in cases that are somewhat treatment resistant, like mine. Again, hats off to Dr. Adams of Cincinnati for her amazing innovative thinking... if I did not have my competent team of Dr.'s who I trust and admire wholeheartedly at Children's Hospital Boston, she would undoubtedly be my next in line physician. I had the pleasure of meeting her at the biennuel Klippel Trenaunay Conference a couple of years back and it was a truly remarkable experience. Aside from excelling radiantly at her craft, she is implausibly kind and well-composed and just an all around lovely person.

Anyway, I will jump right into the update now!

Th Sirolimus has now had time to build up in my body to a therapeutic dosage. I got my blood levels checked approximately 6 days ago and was told my levels are indeed perfect. However, the past week has been somewhat of an anomaly for me, as I got sick in a way that I never had prior... My family always jokes with me and says that I never get “normal people sick.” Up until now, however, they have mostly been right. Over the years, I have endured the occasional cold and/or short term virus, but never have I gotten a bug that lasts for more than a day or so or one that wreaked utter havoc on my body (aside from all of my infections and other Klippel related illnesses, of course!).

A few days back, I started vomiting uncontrollably and had extremely sharp pains in my lower abdomen. I also experienced diarrhea in conjunction with a low grade fever, relentless headaches, and dizziness. For the three days that followed, these symptoms persisted and I even contemplated going to the emergency room. However, my symptoms eased up as of last night and for the first time in days I was able to hold down my medicines. So, I had three days where I was off the sirolimus and my other medicines (which made me incredibly nervous). Now that I am on the mend from whatever vile bug that was, I am able to resume the medicine as normal. I just spoke to one of the nurses, Jen, from the hematology department who works alongside Dr. Trenor. She is the person I speak to in regards to questions, concerns, or anything else to do in relation with the Sirolimus. She has been so incredibly helpful and kind to me throughout  arduous points in my life as of recent (most notably when I had the thrombophlebitis all throughout my upper leg) and I am so appreciative of her.

It is interesting to me that I contracted this bug right after the Sirolimus reached a therapeutic level in my body. While Sirolimus may be key in taming my Klippel, it does in fact hinder the immune system in other ways and makes one more susceptible to other illnesses. To help combat this, I am taking bacterum three times a week. It is vital all patients on sirolimus take this antibiotic while on the drug or else there is an elevated risk of contracting fungal pneumonia, among other things...

Other than the vomitting bug, I do not notice much difference in terms of my daily life thus far. I still have leaking of lymphatic fluid from an area on my Klippel, and rectal bleeding along with chronic pain. It will be interesting to see if the Sirolimus helps to correct these invasive issues over time. I should note that I am sleeping a great deal, however I cannot for sure say that is from the medicine itself. Chronic pain (which I, along with many other Klippel patients, have) tires one out greatly. Plus, I am sill recovering from my last infection and surgery that took place a couple of weeks back with Dr. Alomari. I also deal with a large amount of depression and anxiety, which can be mentally and physically exhausting.

So, for now, no bizarre side effects that I have noticed but I will keep you guys posted!

Hope everyone is doing well and getting to enjoy some (hopefully) nicer weather. I spent most of last summer in the hospital with a Strep B blood infection (among several cellulitis infections) so am hoping that I will get to enjoy the warmer weather as it approaches this year.

As usual, please feel free to comment on this post with any questions or comments you may have. Below I will leave you with a few pictures from the past week. Talk to you soon! - Arianna

I got my hair done professionally for the first time in a while; it felt good!

Sinead & I goofing around in one of the kid carts outside of Children's Hospital. I used to be wheeled around in these all of the time as an inpatient when I was younger!

Eating dinner with Sinead; one of my medical friends who was in town from Toronto, Canada for a few days!

Another picture of the two of us before we went out for dinner.

Reunited

It wasn't as surreal as you would imagine it to be – at least it didn't feel that way. It was almost as though we picked up where we had left off...we had first met in person in Minnesota a couple of years ago. Skype, Facebook, texts and phone calls were a constant between us ever since then, and perhaps that it why it was not quite so overwhelming to see her in person yet again. As the car pulled up, I saw Sinead and her mom waiting for me outside the Longwood Inn. Because I am on so many medicines for my KTS at present, I have been battling feelings of nausea, sweating, insomnia, etc. I had only slept about 3 hours the night prior and felt so incredibly fatigued, but I did not care. I did not care that my leg was aching beyond belief and that my butt still felt sore from the last infection and surgery. Nothing was going to get in the way of me seeing one of my best friends for the first time since the KT Conference a couple of years back.

It was so nice to see one of my dearest friends I had met from the online medical community. I wish I had felt better, but unfortunately I did not have a say in the matter and tried to ignore all of my yucky symptoms to the best of my ability. Having friends who understand your daily struggles has been so incredibly life-changing, and it makes me feel as though I am not so isolated. Below is a couple of pictures from Sinead's visit to Boston. - Arianna

Introducing “The Sirolimus Diaries”

Hi everyone!

I am incredibly excited to be starting this new journal series of my blog entitled “The Sirolimus Diaries.” Anyone who knows me well knows that I have spent the entirety of my life battling Klippel Trenaunay's relentless symptoms, but that this past year has undoubtedly been a game changer in terms of severity. When I first heard that a chemo drug was being used on Klippel patients in Cincinatti, I was flabbergasted. I had never imagined that such a treatment option would ever be viable for Klippel patients, but indeed it has proven to be. The lovely Dr. Adams (who Dr. Fishman openly refers to as his “sister”) spearheaded the initial treatment on a particularly treatment resistant vascular anomaly patient of hers, and this patient experienced fantastic results. A two year trial was then set up for other patients, and many also saw life changing results as well. At first, I was rather hesitant to begin taking this drug that could (or could not) possibly help my Klippel-Trenaunay Syndrome. A chemo drug?!? Never in my wildest dreams did I imagine I would be taking this for my Klippel! It seemed too tremendous a thought for me to comprehend all of a mere six months ago, but I now feel much differently. Below, I will explain why me and my doctors now feel this drug is a good option for my particular case.

My cellulitis infections progress much faster (which I did not even think was remotely possible) than they used to. Now, when sick, it feels as though there are literally steak knives going through my buttock and thigh area, and the pain is intolerable. I used to think the pain from these severe infections was already at an all time high, but I had no idea they could actually feel much worse. Every moment before I arrive to the ER (where I am continuously bombarded with an abundance of various pain meds before the pain starts to dwindle even little bit of a noticeable amount) feels excruciating and I literally get systemically sicker by the minute.

Perhaps what is even worse, however, is that these infections quite often happen while I am already on antibiotics to treat the last severe cellulitis infection (usually a high dosage of an oral antibiotic that was preceded by weeks of multiple intravenous antibiotics). Of course, this could be because my body has obtained a different bug in which the particular oral antibiotic does not cover. However, with Klippel, it is indeed very rare to grow back any kind of specific bacteria and therefore doctors are often not sure what bug they are even chasing (which, ultimately, leads them to putting me on broad spectrum antibiotics). This past summer, however, I did something incredibly rare for a Klippel patient; I grew back Strep B in my blood. I had a serious blood infection, and it refused to respond to antibiotic treatment until Dr. Alomari was able to perform a couple of dramatically helpful (and ultimately lifesaving) surgeries in which he drained cyst like areas in my left buttock, thigh, and leg. Much to my disdain, these cyst like areas keep coming back and Dr. Alomari has been forced to repeat this procedure several times.

I have continuous leaking of lymph fluid and blood from several areas despite surgical intervention. I have dealt with rectal bleeding for a multitude of years now, and it has always been rather treatable by Dr. Fishman performing a rather simplistic procedure. After he would perform said procedure, I would have stability (as far as the rectal bleeding was concerned) for about a couple of years time. These days, however, my rectum apparently has a mind of its own (I apologize for I just realized how incredibly gross that sounds) and bleeds out despite surgical intervention. This is rather dangerous as I am already incredibly infection prone, and this serves as a pathway for bacterium to make its way into my buttock. Also, it is rather uncomfortable and sometimes even painful. Lastly, but certainly not least, it has caused me to be an anemic (which I have been in the past due to different Klippel issues that were resolved several years ago) and in result zaps away a great deal of my energy. The rectal bleeding is just the tip of the iceburg, though, as I experience leakage of lymph fluid and blood from a bevy of other areas as well that have not responded to c02 laser and schlerotherapy.

Blood clots have also become an increasing problem for me throughout recent years. Most recently, I struggled with thrombophlebitis throughout the entirety of my upper left leg. While most people get it in a vein or two, I had it in a considerably widespread area that led to a month of me not walking (prior to surgerical intervention by Dr. Alomari). As one nurse said, “most people get thrombophlebitis in a vein or two, and you got it all over.” About a week ago was the surgery by the incredibly talented Dr. Alomari and I am still in a great deal of pain from it. Perhaps the worst, however, was the pain I was in before the surgery; this pain was so deep that I literally could not stand on the leg whatsoever. Ironically, the clotted veins were located in superficial areas and not in the deep venous system. However, superficial clots are extremely painful because they are so incredibly close to the nerve endings.

Throughout these past 9 years or so, my chronic pain has become much more drastic and invasive than ever before. Pain medication does not even do much justice anymore, and I find it hard to function on a daily basis like a “normal” 22 year-old-college student would. Because I am in the hospital more than I am out, I have had to take three medical leaves from college within the past three years.

My Klippel circumstances have indeed pushed me into a corner, and as one doctor put it I simply don't have stability anymore. Because of this, we started the drug about a week and a half ago despite months of me mulling over the idea. At first I was hesitant, but I now see it as my only hope in tangibly achieving some sense of normalcy again in the near future. My Klippel has indeed taken on a life of its own, and continues to put me in life-threatening and painfully excruciating situations despite treatment. Below, I will sum up the main reasons in which I have turned to Sirolimus as a feasible option for helping to treat my Klippel despite my initial hesitance.

1. The frequent occurrence of severe cellulitis infections despite treatment
2. Continuous leakage of lymph fluid and blood despite surgical intervention
3. Intrusive blood clots
4. Intense chronic pain

I will be updating this particular part of my blog weekly, and look forward to sharing my experiences while on it with you. Please do not hesitate to ask questions in the comments section below, as I will do my best to answer each and every single one to the best of my knowledge. - Arianna