This coming weekend, I have the pleasure and honor of speaking at the biannual KT conference in Minnesota! There will be an array of people there, from patients to patients families along with doctors and other supporters. Admittedly, I am so nervous to speak in front of such an amazing and intellectual audience but I am thrilled to be given the opportunity to.

Aside from that, I will get to meet so many of my beautiful KTS family members in person – it is going to feel so surreal! Over the past three years, I have come to form such intimate and special relationships with so many people who face the same or similar emotional/physical issues I do on a daily basis. They are who inspires me to keep moving when I feel stuck in a rut. Without them, I honestly do not know how I would survive. I cannot believe the day is almost here for me to meet everybody!

“I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.” - Helen Keller

Are you really taking care of yourself?

It's of no secret to anyone that our society is consumed by looks. We hither towards the external as opposed to the internal for it is easier to understand; less complex so to speak. It's tangible. How many of you with chronic illness have appeared fine on the outside (whether physically, emotionally, or both) while you were actually suffering on the inside?

Chronic illness is such a tricky thing; along with juggling the physical aspects, one must not neglect the mental components. Life, so I have been told, is all about a healthy balance. Numerous studies have already suggested that stress shortens lifespan and can promote physical symptoms of sickness.

I can be infection free for months, and then as soon as September comes around, my body falls back into old patterns. This has literally happened every year since my freshman year of high school at the onset of the cellultis episodes. Keep in mind, these infections are spontaneous in nature and do not come at set times. So why do I seem to be so susceptible to getting them every September? September marks the beginning of a new school year, and the start of resuming back into the daily hustle that was impeded upon by summer.

Starting up an intense schedule puts an immense amount of strain on the body, and produces loads of stress. My doctor's have said that stress can play a role in these infections; something in which I do not doubt at all.

Stress lingers on the inside, but it is just as important as the bleeding wound on your knee. Don't ignore it, seek healthy ways to try and relieve it.

Unlike the vast majority of patients with this condition, I was diagnosed with KTS at birth. Many of my other KTS colleagues have had to endure misdiagnoses' and/or several years of not understanding the medical reason in which why what was happening to them, was, well, happening to them.

I cannot imagine the terror of not knowing what is wrong on such a large scale. In fact, just thinking about it causes me to cringe.

Take a look at the photograph below and then tell me it isn't utterly heart-wrenching. To make matters worse, this little girl is undiagnosed as her family is too poor to seek medical attention. Hopefully, their new found publicity will assist in getting her the funds in which she so desperately needs.

Here is where I found her story. I can only hope this beautiful girl gets the answers and medical treatment she so rightfully deserves. 

"I belief that to live is a prize

but to live doesn't mean you're alive"

I am so guilty of the last one. 

It can be extremely hard to live in the moment when you have a chronic illness; even without one, too. We are taught to plan ahead for our futures by investing and saving money for later times. Yet, society is constantly pressuring people to live in the moment.

Live in the moment.

The phrase may be simple, but the action is not.

Professionals in the medical field have found that it is especially important for people dealing with chronic illnesses. It is of no surprise that stress can exasperate symptoms of a chronic illness and take a toll one one's emotional and mental well-being.

I have been experiencing this problem for some time now. Each day, I panic that I will get another cellulitis infection. The reality of the situation is that they are spontaneous and I will never know exactly when one will unravel until it actually does. However, I do know that one is always imminent; eventually anyways. It's a reality I have to deal with, and it has proven itself to be a difficult one for me to endure.

Often times, people with chronic illnesses feel as though they have no control over their own life. Professionals, however, say that living in the moment not only lends vigor to one's life, but an aqcuired sense of control as well. I have also read that days in which we are feeling good are often overshadowed by the endless stream of worries that seem to be permanently fixated within our minds. Therefore, the good times go unappreciated.

There are various other reasons why it is recommended one lives in the moment as well but I will not get into all of them here.

Evidently, this notion of appreciating a moment and being fully present in it is one in which I have far from mastered.

For people with chronic illnesses, how do you suggest they live in the moment?

Over the past six years, I have learned that the love of a pet is truly equal to that of a miracle, at least it has been for me. I got my beloved dog Fe June when I was in tenth grade. At that point, I was at my worst as far as cellultis infections are concerned. I had never been so sick in my entire life, and never had I been so sick as often. Whether it was coming home from the hospital or a stress-filled day of school, my dog was always there to greet me with her wagging tail and cuddles.

Never underestimate the love in which a pet can give.  

In fact, never underestimate the health benefits in which pets have been proven to give to those who take care of them. Did you know that pets can help reduce stress and relieve anxiety?

I found an interesting article on the subject entitled Animal Rx: 11 Ways Pets Make You Healthy

Read for yourself to see why house pets are supplemental to a healthy lifestyle and how they help patients of chronic illness. 

On a personal level, I can say that when I am going through especially wicked bouts of depression, my dog helps keep me moving. I put her needs before my own, and no matter how bleak the world around me may seem at that given time, she helps put a smile on my face. Even when I am filled with despair and feel like an utterly hopeless case, she gets me to put my feet on the ground at some point whether it is to fill her water bowl or take her to the bathroom. When in such a low state, the mere act of moving can be that of a tremendous effort. Yet, I have found that once you start to get moving again, each step starts to get a little less hard. 

My dog has been my miracle. She is 13 years of age tomorrow.

Talking to a KT friend who you can be open and honest with makes all the difference (in a positive way, of course). Looking forward to meeting all of my amazing KTS friends at the meeting in a couple of weeks. 


I know it will genuinely be a surreal, life-changing experience.

Death.


Just writing the word terrifies me. Yet, after all the thinking I have done on the subject, I am still completely uncomfortable with it.


The fragility of life is something that I find to be so utterly intimidating. People with chronic illnesses see doctor's more often and, of course, are equipped with more medical needs than the average person, so I guess it makes sense that the subject would cross my mind more frequently than my peers. 


Anyways, while this topic has been on my mind, I came across an article written by the now late Nora Ephron. I did not know of her prior to learning of her death, but based on this writing alone I am now an avid fan. The honesty she displays in her work, along with the engaging writing style is splendid; it makes for a memorable read. 


There was one part that really resonated with me; it felt as though this was something I would have written myself.

"Here are some questions I am constantly fretting over: Do you splurge or do you hoard? Do you live every day as if it’s your last, or do you save your money on the chance you’ll live 20 more years? Is life too short, or is it going to be too long? 

Do you work as hard as you can, or do you slow down to smell the roses? And where do carbohydrates fit into all this? Are we really going to have to spend our last years avoiding bread, especially now that bread is so unbelievably delicious? And what about chocolate?" - Nora Ephron

It's somewhat eerie to see these words in writing, yet strangely comforting for I now have solid evidence that I alone do not often ponder these conundrums, and how fair life can be. 


Like many other people with chronic illnesses, I don't know what my health will bring me on any certain day. All people are victims of this to some extent, of course,  it's just those with an illness experience have a heightened level of uncertainty, one could argue. 






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When every minute is uncertain, do you live for today, or do you live for tomorrow?


Rest in peace, Nora and thank you for the awesome bravery and honesty you possessed in your writing.