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

Relentless Chronic Pain, Establishing Normalcy

“Walking through the city street, is it by mistake of design, I feel so alone on a Friday night can you make it feel like home if I tell you your mine, It's like I told you Hunny”

I hate the feeling of a flare-up, it drives me incredibly wild to be absolutely honest! Perhaps the essence of the problem is that one cannot always be sure it is merely a flare-up in that moment. One day about a week ago, I awoke with a cellulitic red spot located somewhere between my foot and ankle. It did not look bewildering by any means, but certainly suspicious. The other evening, I had to awaken my mom in the midst of her slumber to dip into my emergency stash of oxycodone as the pain was radiating throughout the new red spot and the entirety of my lower leg. This pain was barbarous; it would not allow me to sleep and was certainly an anomaly as far as my everyday painful sensations are concerned. It could have been inflamed veins, although I will likely never know the real source with such an inconspicuous condition (unless I had chosen to venture to the emergency room). Fortunately for me, no further symptoms accompanied this area such as temperatures or chills and what not. So, the pain medicine eventually kicked in and the next day the area in its entirety felt much better (a heating pad accompanied the medicine and did great justice as well, I believe). However, the spot still remains although I am still very much so stable in vitals and other telling symptoms.

I am continuing on my IC Cephalexin 500 MG capsules twice per day and I truly feel they are doing the heavy lifting in maintaining my health. I will be on them for at least three more weeks or so. While they can be rather upsetting to the stomach, it is far worth the residual side effects to be home and in a state of “normalcy.” Discovering normalcy, however, is still a startling challenge living with a chronic condition that causes me so much relentless chronic pain. The infections are gone (at least for now) and I do not mean to belittle that greatness by any means. However, the lower leg pain is so incredibly persistent and vicious in nature that at days I am very much so overly-sensitive and on edge; to say I am emotionally well-adjusted at present would be somewhat of a lie. However, I am doing my best to maintain honest, healthy friendships and venture out every now and then despite the pain. Sometimes, I find myself lashing out at those around me and being incredibly irritable; this is by no means the way in which I like to conduct myself. I feel guilty quite often about this, and try to communicate my remorse to those in which I may have unintentionally hurt. However, I cannot use my pain as an excuse to treat people poorly or I will be doing so for the rest of my life! By no means do I want my legacy to be that of a moody Mindy or bitter Betty.

Friends urge me to be optimistic about future breakthroughs in the medical world, but I have great trouble doing so. I understand where they are coming from, but they simply cannot understand my point of view unless they are the ones in pain 24/7. It eats at one's nerves, and chronic pain has been scientifically proven to mess with the brain's chemistry. Perhaps, then, it is no wonder I often find myself anxious and depressed despite being under the care of a talk therapist and doctor. However, I am greatly anticipating my appointment on January 3^rd to meet with my doctors to address issues of what we can make better with my Klippel.

Below is a picture of me with my sisters on Thanksgiving. It was a truly lovely day as I got to celebrate with the people who have been there for me through the worst of times; at my ugliest, sickest, and meanest. Yet, I know they are not going anywhere and I know I am indeed very blessed to blanketed in such unconditional love. May you all be well. - A  

It's Okay to Seek Help

I am about to be incredibly blunt and speak my mind about a subject that has been brought up recently amongst some of my KT colleagues. The subject in which I am going to touch upon is that of chronic illness and depression/other mental illnesses. Now, there is no denying that the two are somewhat synonymous; there is ample research to support this claim. We are humans and we feel, if we didn't then we wouldn't be human. In fact, if someone came to me and said they have had 20 surgeries and deal with chronic pain on a daily basis but experience no negative emotions whatsoever, I would find that to be concerning... More concerning than if they came to me and said that sometimes they feel down and depressed. Why? After the body experiences a certain level of trauma, it is only natural to experience those kinds of negative feelings. Not to mention that chronic pain does impact the chemistry of the brain and can absolutely play a role in triggering depression/anxiety/etc. The good news, however, is that ample studies show that this damage can be reversed with proper treatment (cognitive behavioral therapy, for example).

Here is where it gets tricky, however. How do you decipher between an appropriate response to a chronic illness and actual mental illness? The lines can be incredibly blurry, and it can be confusing for even us ourselves to know the difference, not to mention our friends and loved ones. That is why I am not going to delve into the topic of possible medication for people experiencing pronounced symptoms of depression and anxiety in this post. I do not have the expertise to do so; I only have my own experiences to go off of and that can potentially be another story for another time.

All I know is this; there is no shame in seeking help, and cognitive behavioral therapy has been shown to be effective in a multitude of cases. Sometimes this is supplemented with medication, other times it is not (it is, of course, dependent upon the patient's specific case). Either way, it cannot hurt and can only benefit the person seeking help. We live our lives as best as possible, but the abnormality we face due to our condition does indeed impact us. Everything within our environment impacts us, and sometimes we need an unbiased source to give us guided, professional advice.

There is no shame in seeking help or talking to somebody. Everything I wrote above stems from my experiences/own views/research but I understand I still have a great deal to learn in regards to chronic illness and deciphering between an appropriate response and mental illness. Feel free to weigh in with your own views in the comment section, I would love to read them! As a future psychologist, reading this stuff is like candy for me ( : ! - A

Thoughts Stemming from Chronic Pain

You want to put it out of your mind, but you can't, there's just no way. The pain cuts too deep and is far too widespread to just shove into the back of your mind and into oblivion, and you're just left to deal... You're left to deal with a mess that is not of your own doing, but one in which you were born into... and at that point, it is hard to tell which is actually more painful... the emotional or physical component of your condition. You're never quite able to tell, however, as when one is turned on, so is the other. They act simultaneously, and together can create a force so audacious and relentless that you wonder if you ever stood any chance at all.

- A

I love being a college student, I really do. It gives me an incredible sense of normalcy that I would otherwise lack in my daily life. However, on nights like tonight, I wouldn't mind having summer back for a short period of time.

I am in work overload, and while I freakishly enjoy doing my academics on some nights, I am not feeling quite so stellar about them right now. What does any of this have to do with my KTS?

Well, a little over a month ago I went and had my iron levels checked; I have been bleeding a lot, but have not wanted to go for the surgery that temporarily stops it (my last one was a while ago). Prior to getting checked, I was exhausted all of the time and slept more than I ever had before. It was as though some dreary spell had been cast upon me.

Anyways, my iron levels had dropped a lot since the last time I had been checked (June, when I was hospitalized last). My doctor said that this could explain the tiredness I had been feeling. So, he put me on some daily iron supplements to help bring the levels back up. I am going to have them checked again in about a month, to see how the supplements are working. If my level is working its way back up, I can hold off the surgery for longer.

Even though I do feel less tired, I am still more dreary and get exhausted really easy. Overall, my body feels week, and my immune system could use some more help from my diet. My body is telling me to sleep, but my schedule says otherwise, and in order to be successful, I have no choice but to try and abide by it the best I can. So I study, and then study some more, classes, club meetings, etc. Then the weekend comes, and guess how I spend my Friday night? Sleeping. I love it! Waking up the next day and feeling refreshed and well-rested is the best.

I do count myself as really lucky though. As tired as I may be, I am otherwise pretty healthy; unfortunately, not everyone shares my luck. A dear friend of mine is back in the hospital after just being released a couple of days ago. When I do feel overwhelmed, I think of her and how much she would love the freedom to go to school and live the “normal” life that I am for the most part living. It's a reminder to myself to not take my own hectic days for granted.

& then, I carry on.

Chronic Illness and Anxiety

It is already very well-documented that chronic illness and anxiety go hand in hand. How couldn't they, after all? Life is full of enough surprises for those who are not plagued with a life-long illness of some sort, so it is no surprise that the two are closely interconnected. It is easy to get caught up in thought processes revolving around your health as far as the future is concerned. From my own experiences, I learned that these thoughts can turn into endless repeated cycles of anxiety/anxiety attacks.

If anxiety issues run in your family, you may be at even more of a disadvantage. It is heavily rampant among some of my elder family members in my immediate family, so genetics along with atypical medical circumstances has created the perfect storm of anxiety disorders. If you find you are struggling with an anxiety disorder of some sort along with chronic illness, you are far from the only one. As daunting as constantly juggling both of these hardships may be, know you are not alone in your battle and that there is help out there.

I love reading articles/studies that are both informative in plausible in regards to the subject. Some are of course more comprehensive than others, but I tend to find that they all (for the most part) offer beneficial suggestions in reference to leading the healthiest and happiest lifestyle possible despite these often exhausting/painful conditions.

Here is just one of several articles on the internet that offer some good advice on dealing with chronic illness and anxiety.

Invisibility and Illness

"Please put this as your status for at least 1 hour if you or someone you know has, or has had, an invisible illness (Diabetes, Crohns, PCOS, Rheumatoid Arthritis, Kidney Disease, Epilepsy, Fibromyalgia, MS, COPD, Lupus, Depression, M.E, Autism etc). Do it for all who have an invisible illness. It's a daily struggle feeling sick on the inside while you look fine on the outside. x"

People who struggle with an “invisible” illness of some sort learn to view the world and the people within it in a different way. We become less trustworthy of

appearances as we know better than most that nine times out of ten, everything is not what it seems.