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