See You Later, Boston

I'm going away to Atlantic City for three days with my grandparents! Even though I have to bring a lot of homework and studying with me, it will feel good to escape my familiar surroundings for a little bit. I brought some Avelox in case an infection pops up, although I know the chances of that are very slim. Still, got to be prepared!

Have a lovely weekend,

A

Truth

Sometimes, in the past (secretly), I used to feel like I didn't measure up to anyone or anything because of my physical abnormalities. Don't even get me started on talking to guys, I felt like I wasn't worthy. & When I would talk to a guy (back when my KTS was much less prominent and not very noticeable when wearing jeans), I felt like they wouldn't talk to me anymore if they knew my secret. I don't want anyone to ever secretly feel this way either, because it's not true. If you were born with a physical abnormality, you are just as pretty and good as someone else because of it. Even though it can be extremely difficult to embrace a body that may cause you a great deal of tenderness, know that no shame should be associated with how your body looks. Let that soak in, because society will tell you otherwise. However, I was born beautiful, and you were, too #noshame - A

Online Dating with KTS

So I admit, I dabbled lightly into the world of online dating; it was about three months or so that I initiated a free account. I think it was the day after I had got home after one of my hospitalizations that I created it – I was home feeling bored and lonely, aside from being sick from my KTS. It was as though I was living life in a fishbowl – I was watching everyone outside going about their lives, while I remained stranded in my own little habitat. Friends of mine were going on dates, and it made me jealous. The problem with dating for me, however, is how little of energy I often have. Usually, a school day is enough to wipe me out – my body has a very hard time juggling my academic and personal life as it is, and that's with just friends. Yet, there is a part of me that yearns to be in a relationship – even though I may not be ready for it emotionally. Still, the day I created my account, I was bursting with optimism.

“So, why not just join a site and see what happens? See who comes to me, and maybe if we form a relationship based on conversations, see where it goes from there? What's the worst that could happen?”

Not long after I created my account I decided to mention my Klippel-Trenaunay Syndrome; it impacts my daily life, and is a vital part of who I am. It is not me, but it is surely a part of me. I did not include any pictures of my leg, but figured they could Google the condition and get an idea of it. I did, however, explain how it impacted me medically and on an everyday basis. That didn't stop the requests from rolling in, much to my delight. It felt good to be wanted, even if it was from 800 weirdos scattered across the Boston area (not to say all are weirdos, I did meet some very nice people!).

Among the many, I found a few who I seemingly clicked with. The conversation would transfer from the dating site to my phone, and it felt good to be somewhat in the game, even if I was still very much so a pathetic rookie. Eventually, as the conversations grew more detailed about our personal lives, I would send guys a picture of me and my leg exposed. Since then, each one had lost interest. I told them that it's okay because I am confident in myself and understand that not everyone is equipped to deal with such a thing. Inside, however, it does hurt. I mean, I'd be lying if I said it didn't. Just yesterday, a guy I had been talking to for a while that I really liked finally saw a picture of my leg. Prior to this, we were texting often, and had gotten to known a fair amount about each other. Yesterday, he mentioned something about me in a bikini. Well, I said back, I may not look as sexy in a bikini as you may be thinking, you did read my profile right? He said yes, and then said “so what, you have a couple of scars or something?” Um yeah, buddy, let's call them that why don't we. I then proceed to send him the picture – and about an hour later, he tells me I still look beautiful. I thank him, but I know that this is the end, and it was. The pessimism soaks in, but I try to shove it aside and get on with my schoolwork. Even though I consider myself a confident person KTS wise, it just reminded me that I am still vulnerable, too. It hurts when people reject you - especially over something that has already caused you such a tremendous amount of pain in life thus far.

Any of you Kter's have experience with online dating? Have you had better luck than me? - A 

Knowing When to Lay Low or Push Harder

You know what I have a great deal of trouble in-deciphering between, sometimes? Putting my health first and just being plain, well, lazy (or what I perceive to be lazy).

For the past several years, the concept has been grilled into my head, numerous times repeatedly: always put your health first, the rest will wait. & I always had a hard time accepting that - and put school/other obligations first. However, overtime, I've learned that my health does indeed need to come first at times.

That's easy to do when I am in the hospital; pretty much everything else falls to the wayside. However, when I am at home as I am most of the time, the line between putting my health first and being laggard can become quite blurred.

Further complicating matters is the fact that I deal with mental illness in addition to my Klippel-Trenaunay Syndrome. However, I know that I am not exclusive in this battle. Often a time, chronic illness is at one point or another accommodated by mental health issues like depression and anxiety (which is probably not news to most people in-tune with chronic illness awareness).

I haven't been sleeping very well; this is an issue that currently relates to my mental health issues. For weeks now, I've been waking up in the morning feeling mentally and physically exhausted. My Klippel-Trenaunay Syndrome ends up suffering too, because throughout the night I am tossing and turning relentlessly. So, by the time I wake up, I am also in a lot of pain from my KTS.

One day last week, I said I couldn't do it, I couldn't go to school that day. Between the lack of sleep, mental exhaustion, and leg pain, I felt defeated and lifeless. But, as I was sitting there saying I couldn't do it, there were thoughts that popped into my head: “push harder, you can do this; life is going to give you hard days and hard times but you cannot just succumb to your struggles. Everyone in life is dealing with struggles, and they still get up and do it, you should too.”

These are the conflicting thoughts that run rampant in my mind on mornings like those. Ultimately, I stayed home that day and it was the right decision in that moment. What about the rest of the time, though?

How do the rest of you cope with knowing when to push yourself and when to just take a step back for some time?

Is this something you struggle with like myself or have you found a balance that pleases you? - A

It's Okay To Take A Step Back With Invisible Illness

Hey everyone! So I am located right in the eye of the blizzard Nemo, and things outside are intense! We already have about a foot of snow, and overnight we should be getting at least one foot more. I guess it's just an end to an already crazy week!

This past school week, I skipped a couple of college classes; I was grappling with an episode of depression and was not sleeping at night, at all. The worst part was that I could not get myself to even cry to release some of those pent-up stress-hormones, it was almost as though my body had ran out of tears from years past. Normally, after a good long cry, I actually feel better. Strange as that sounds, there is actually scientific evidence to back up my claims of feeling better after a crying session.

Anyways, with my depression acting up and my leg sore from the relentless cold, I resolved to stay in for the day and sleep. I am not an advocate of missing classes by any means; but I am an advocate of putting your health first, whether that's mentally or physically. And I've learned that means that sometimes I need a day or two just to get myself back together, and if anyone wants to judge me for that, that's their problem.

My KTS is not invisible but my depression is and we live in a society that takes that for granted (although less than before, thankfully). What I'm saying is this: fighting is an important part of depression. Fighting can entail a vast array of things, for some it can simply be getting out of bed in the morning and putting one foot in front of the other. Or, it can mean working towards a degree even though you feel your future is utterly hopeless. HOWEVER, you also need to know that sometimes, you need to take a step back and regroup. In fact I would argue that indeed that is a way of fighting depression.

If your depression is similar to mine, it will try to demean you for having the audacity to allow yourself a day to try and regroup. It will tell you that you are lazy, and that it is typical of you to give up, and that you're just continuously screwing your life up. Fight it though, by telling your illness that you need a day because you are dealing with a very real illness. You would have no qualms about taking a day off if you were diagnosed with the flu, right?

It took me a very long time to learn to put my health first, even if that meant some things had to fall to the wayside sometimes. But you know what? Those two college classes I missed didn't kill me; I made up the work and am in groove with the rest of the class. A full schedule with mental illness along with a chronic illness is exhausting, but ALWAYS remember to BE YOUR OWN ADVOCATE. - A

Agree?

Disagree?

I want to hear it in the comments! ( :

When Neither Sitting Nor Standing Will Suffice

I have a dilemma, and one that is not exclusive to me by any means whatsoever. In fact, it may impact more people than you might think, or perhaps it just seems that way to me because of all my KTS friends. Anyways, pain medicine helps keep my lower leg in check; with my pain medicine, I am able to function similar to that of a person with a normal leg. It's truly a blessing, that much I will certainly tell you. However, pain medicine can only go so far (at least in this context). I cannot stand for endless hours or ponder signing up for the Boston Marathon anytime soon. Which, quite frankly, is perfectly fine. I feel incredibly fortunate to be able to get out of bed and to class without feeling even 1/5^th the intensity of pain I used to (prior to finding a pain medication that worked).

Since people most often associate my illness with the parts of it in which they can see (the leg), they don't always realize that it doesn't just impact my left leg. My Klippel-Trenaunay Syndrome extends up to my left buttock as well; in fact, a great portion of my surgeries and infections have revolved around this area. It's a problematic area for me, and it has grown to be increasingly problematic to me as the years have progressed. For example, a plethora of hermangiomas have developed on the buttock area that make it painful to sit; these can be removed by my excellent surgeon every couple of years or so. So while these cannot be permanently squashed, they can certainly be maintained.

Right now, I need to have the operation done as I am overdue and sitting is rather uncomfortable, even on soft surfaces. Plus, the longer I put pressure on the hermangiomas by sitting on them, the more I risk them becoming irritated, the skin being broken down and becoming infected. Even though it's a day surgery and has relatively low risk, I put it off because it's not a very comfortable procedure to have done.

Some people wish for rounder butts, or ones that have less cellulite or whatever. I, however, just wish for one in which I can sit on without discomfort and/or fear of a cellulitis infection.

Where am I going with this? We live in a society that likes to see things in black and white; I for one sure do. Good and bad, weak and strong, soft or hard... But it's not often that simple, unfortunately, as is often evidenced by medical conditions.

“Oh your leg hurts? Well then why don't you just sit down?”

- A

Long time no write – not intentionally, however! School has proven to be a daunting task – by the time I arrive home I just want to sleep endlessly for hours on end. That, however, is not possible seeing as I usually have school the next day, which means an incredulous amount of homework. However, the effort is so incredibly worth it; my mind has not been stimulated this much in ages.

I commute to school – and I have to say, physically attending class would not be a viable option for me without an effective pain medicine (I am on 15 mg meloxicam/day, it's an NSAID). And while I have the pain medicine on my side, there are still other variables that impact how I feel, and I mean besides the hermangiomas, bleeding out, and overall heaviness (of my leg) that results from my Klippel-Trenaunay Syndrome. I have been diagnosed as bipolar (I got two opinions from different doctors) and deal with obsessive thoughts and anxiety on a daily basis. So, aside from Klippel-Trenaunay Syndrome, I am constantly attending talk therapy and doctors appointment to deal with these disorders. Quite frankly, all together, it's utterly exhausting. However, it has inspired my career choice, which I have chosen to major in psychology.

I am not here to right a sob story I promise you – I am lucky is so many ways and it's absolutely vital to acknowledge that, so I make sure that I do often. I guess what I am saying is that in many ways, I feel as though I live a double life (Hannah Montana – Best of Both Worlds, anyone?). Constantly straddling my Klippel-Trenaunay Syndrome with my mental disorders while attending school full-time is exceptionally demanding. Yet, I have to say again how worth it the effort it. Everyday I attend school is a day in which my horizons are broadened; my world continuously expands in ways I never knew it could.

With that said, however, I am extremely ready for the weekend and have been eagerly awaiting its arrival! I will write more soon – but I just kind of wanted to let my readers know why I may not always get a chance to write that much during the school week.

Wishing you all well,

- A