Imminent Surgery

Hi everyone! I have not updated in a bit as I have been rather busy maintaining my health (both emotionally and physically speaking). The picture in which you are viewing is not exactly the most pleasing to the eye, however it is a picture of the growths in which I am going to have operated on soon by Dr. Alomari from Children's Hospital Boston. These growths, despite how minuscule they may look, are prominent in a rather unpleasant place (further explained in my previous post "Underneath Your Clothes") Due to their location, I have an extremely hard time wearing underwear. Not to mention, they are located in an area that is incredibly sensitive in terms of nerves and sitting is rather uncomfortable... I am in a constant amount of steady pain. No matter what location I position my body in, they tend to hurt a great deal. I am not on any pain medicine to alleviate the ache as this is a chronic issue. On a daily basis, I take an NSAID called Meloxicam which has helped momentously in terms of being able to walk on my leg. Prior to discovering that medication, walking in general was an arduous task so difficult I thought I would be wheel-chair bound for the remainder of my life. However, this medication does nothing to alleviate the vast discomfort of these growths. Located beneath the surface of these particular growths is a lymphatic malformation (which, of course, stems from the Klippel Trenaunay Syndrome), so we are not quite sure how they will respond to the injections in which I will receive during the imminent surgery (I do not yet have a specific date, but it should be happening prior to this month's end). I have been informed that this surgery will likely be the first in a series to help alleviate the discomfort in this area. 

In addition to these growths, I also have a slew of others that are larger in nature that are scattered on my right butt-cheek and a couple of other various sensitive places. These particular growths will be removed using c02 laser, which I have found to be an extremely successful method in eliminating growths of these sorts in the past. Recovering from c02 laser can be a bit of a hassle, but I have found that it is worth the end result. My biggest concern, in terms of the c02 laser, is acquiring a cellulitis infection. Sometimes, my body skips the cellulitic route and heads straight to sepsis despite me seeking immediate attention upon symptoms of an infection first occurring. To be rather honest, I am haunted by the memory of the multitude of times I have awoken from a night of slumber with a 105 temperature and massive infection. Despite rushing to the hospital immediately, I would find out I had a massive cellulitis infection or was septic. It is not uncommon for me to have dreams in which I relive past experiences concerning serious infections and what not; in fact, these memories slip into my dreams more often than not. I will update again shortly, and appreciate all of the positive feedback I receive in terms of these posts immensely. To have the support system I have is indeed a blessing, and one in which I do not ever want to take for granted. Below is a picture I took last week summarizing some of my feelings in regards to conditions of this sort. I will have more of these to come featuring a dear friend of mine (who also has a vascular anomaly) in an upcoming post.

May you be well,

Arianna

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

Round and Around and Around We Go...

Seems these are rather tumultuous times for me and a multitude of my Klippel sweethearts. Many of them are inpatient at present; as of today, I am too. Once again, I am fatigued emotionally and physically. As for what I am being treated for, I cannot say with total certainty at this point in time. We have yet to rule out infection/deep clot/both. The good thing is I was able to catch it before I got systemic...which very well may be attributed to the 26 day intensive antibiotic regimen I have been on.

In other words, that may be masking things from getting out of control.

In my last post, “last evening”, I chronicled my initial flare-up that led to this hospitalization. While the overt systemic systems died down at rapid speed, I experienced yet another problem this morning. I awoke around 1 in the morning to a throbbing in my thigh that felt cellulitic (based on previous infections). Several hours later and the pain persisted. Between the butt and the thigh both being in abnormal pain, I felt it adamant to be seen and now I am here yet again. There is no striking redness, although there is a feint tint of some.

While I am not one to ever speak poorly of the beloved hospital that has saved my life dearly so many times, I must say I was not impressed with a couple of the vascular anomalies staff members today. I will not mention names, nor go into all of the specifics, but I was talked down to quite a bit (as was my mother) and even toyed with mentally to a degree. I am not referring to the specialists themselves by any means, but rather a couple of the people who work beneath them. Both who mistreated me (especially knowing the complexity of my situation these past 6 or 7 months) lacked empathy and compassion entirely. I just have to remember that I am indeed here for the specialists who are so expert at their crafts.

For now, pain medicine awaits along with bedtime. It was another 8 hour seemingly endless day in the ER prior to being placed into a room.

As always, love to you all - A

My last post was not just seemingly trite song lyrics, in fact they hold profound meaning to me in several ways pertaining to my life with illnesses. Note I said illnesses, not just Klippel-Trenaunay Syndrome. However, to prevent this post from turning into a short novel, I will just focus on the KTS aspect.

My younger college years were when my pain was at an ultimate high. I couldn't go anywhere without my stocking without experiencing a momentous amount of pain. Even with the stocking, the pain was just barely tolerable, if that. Somedays, it seemed as though there was no hope. During this time, we were trying to find a multipurpose way of treating the pain, which included surgeries and medicines. Nothing was working, which just added to my feelings of hopelessness and discontentment. 

This one time, I took a trip to Miami, Florida with my grandparents, mom, and sister. I was so elated to be in Florida (one of my favorite places), not to mention that we were going to South Beach. When we got there, we walked around for a bit exploring the oceanic surroundings (it was too cold to actually go in the water). We took some photographs, and just breathed in the beautiful air for some time. At that point, my lower leg was killing me. It hurt so incredibly bad and I just wanted off of it; actually, I needed off of it. We walked back to the car, and only then did my mom express her desire to go look around the shops. Then came my verbal tirade. “You're so fucking selfish, seriously.” I said that among many other harsh things, because clearly, she was supposed to know how exactly my leg was feeling (note the sarcasm, if you haven't already).

These verbal tirades were not exclusive to Miami, either. They happened at anywhere my leg was killing me (think mall, scenic trips). The pain was just so mind-boggling and overwhelming that I couldn't think of anything else. And this was often with the stocking, too. In the past year I have found Meloxicam (a painkiller with virtually no side effects) and it has changed my outside-of-the house persona a great deal. I love exploring now! But I think of the hell I mainly put my mom through for those couple of years. Sometimes I would force her to give me an arm while out and about because I couldn't do it on my own (and she always generously complied). Other times, while at the mall, there was a wheel-chair involved and she would always push me.

Not everyone would have put up with my tantrums, tantrums stemming mainly from pain at that point in time. But she did, and she still did whatever she could to keep me comfortable. The thing about the pain was this: when I was in such a high velocity of it, I could only see the discomfort and not beyond. The pain was just too consuming (albeit I am not making excuses for myself, either). But it's not easy. All your mind can think about is slowing down or easing the mind-numbing pain. Then, after, when the pain did die down, I would feel so utterly guilty about how I had spoken/acted. It was a vicious cycle, indeed, and not a healthy one at that.

I look back and sometimes wonder how she didn't just completely snap back at me...I don't think she ever did. Somedays, I quite frankly would have strangled my not so gracious self.

Happy Mother's Day Mom & thank you,

Arianna

& you all thought those song lyrics below were just to take up space ; )

"I don't want to turn this into a trite sermon on the passing of time, but..."

I think that when one lives with a certain degree of chronic pain and medical trauma on a daily basis, it can be somewhat easy to fall into our own worlds. In fact, one could argue that focusing on ourselves and our health is somewhat of a primal tactic – a “survival of the fittest method”, so to speak. We focus on getting by from day to day, and don't always realize how quickly time is actually passing. When in the moment, it may actually feel as though the clock is barely ticking. I can't generalize this to all people or patients, of course. This passage is mostly tailored to myself, but I have a feeling one or two people out there may be able to relate. I don't want to turn this into a trite sermon on the passing of time, but tomorrow my sister receives Confirmation. And, this past Friday was her first prom. It's so weird watching her do the things I did not to long ago myself – and it makes me realize that in spite of how slow it may feel life is dragging sometimes, it goes by faster than which I give it credit for.

I think the beauty and heartache of getting older is coming to certain realizations, like realizing that days do seemingly go by in small clusters and eventually you find yourself reminiscing on the past ten years. I'm not good at living in the moment – in fact I am utterly horrific at it! My anxious mind likes to pull me forward constantly, and my depressed one likes to keep me stuck in some gaudy time machine. And I also understand how pain can preoccupy the mind immensely. But living in the moment is worth a try, and that is why I hope to improve upon this subject.

Sister & I

Lovely Klippel Veins

A picture of my Klippel foot taken this morning. If you look closely, you can see the vein that extends from the bottom of my last toe all the way down the rest of my foot. Here is the rather weird thing about this vein: during the day, I function just fine with it. At night, however, when the foot is mainly stagnant, it hurts such a great amount! It makes no sense to me as I would have presumed it to be opposite. But when I do wake up in the middle of the evening, this vein is sometimes so bothersome that it prevents me from falling back asleep.  It may look small, but the pain that radiates from it is anything but.

Medically, I am still in a pretty good place with my Klippel-Trenaunay Syndrome. However, the winter season has been tough pain wise, which I was definitely not expecting; summer tends to be the season that impacts KTS Patients the most because of the high heat and humidity. While I have become accustomed to seasonal weather variables impacting my KTS, I was not even mildly prepared for what these colder months were going to bring.

While I am on pain medication (15 mg/day) that has helped tremendously over the past several months, it has not spared me of the winter tenderness I am experiencing. If I had to describe it, I would say it is almost like a strong headache in my lower leg (the upper leg is immune to this pain so it appears, thankfully) and foot.

I've had a multitude of nights when I have woken up in pain so strong that I have not been able to fall back asleep. That was until about two weeks ago, when I tried a heating pad; just a normal $20 heating pad has helped so much! Each case of KTS is obviously so incredibly different, but if any of you are experiencing similar problems, I would say just go ahead and at least try it to see if it make make your pain more bearable.


Here are some pictures of my leg from the other night. It's funny, because it looks better than ever despite how problematic it's been pain wise this winter!

How are these months treating you guys? -A

Went to two different appointments today - I'm good.

Iron level is adequate due to daily pill supplements.
Am good to stay on Meloxicam 15 mg a day which has helped a lot with my chronic pain. In fact, I credit it with allowing me to have somewhat of a normal life back (mainly going to school).

The one thing I hate is when they ask about all of the pills in which I am on - of course this is vital information for their records, but I still feel insecure about all of the mental health medication in which I am on. Even though said doctors always maintain a poker face, I am scared that inside, they are judging me. Like I said, it's my own insecurity and not based upon actual happenings, so I'll just leave it at that.

For now, though, things are going beautifully with this lovely leg of mine & I am very fortunate. 

I am currently feeling a momentous amount of pain because I was heedless and let myself run out of pain medicine for the past few days, which for me is Meloxicam 15mg. I called CHB pain management a couple of hours ago and am waiting eagerly for them to get back to me, but for the time being I am stuck in bed feeling the burning/throbbing sensations. I was unable to sleep last night because of the pain, and had to skip class this morning as walking was, well, a challenge. When my pain level is this elevated, I have a hard time focusing on anything else as the pain consumes my mind. & to think this all could have been prevented had I not been so lax. I always seem to forget how bad the pain (prior to finding a pain med. that worked) really was until I am off the Meloxicam for a day or more. Note to others: Be wiser than I am and don't allow yourself to run out of your pain medication prior to getting the prescription refilled.

My ankle was pestering me at the mall today, but I have been home resting it for a few hours and am pretty much all good now. ( =

Many of us are aware that chronic pain impedes our ability to live fully and happily in the moment. It inevitably has a major impact on our mood and everyday life, but what about what it is doing to us physiologically in the brain region? Science Daily published a fantastic study (read it here) in 2008 about the way in which chronic pain does indeed harm the brain. 

As more findings support this study's conclusions, it has become increasingly evident that chronic pain is not something to be taken lightly; it is a serious matter and is a threat to not only your physical health but mental health as well. As the study states, "it is essential to study new approaches to treat patients not just to control their pain but also to evaluate and prevent the dysfunction that may be generated in the brain by the chronic pain."

Below is a picture from the article comparing two brains. In order to fully understand the picture and what it is relaying, be sure to read the article. 

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.