Never underestimate the power of a good, genuine support group.


Negative energy is very much so contagious.
Be with people who bring a smile to your face, make you laugh, and are there to listen when need be; support groups are always essential in anyone's life, but absolutely vital in a persons with chronic illness.

Living with a chronic illness (especially an extremely rare one) can leave a person feeling isolated from the outside world; they may feel as though nobody they have any physical contact with in their daily lives can relate or understand the unique problems that plague them.


Enter social media. For people like myself, the rise of social media has been an enigmatic delight. People with illnesses can now have the amazing ability to constantly communicate with people who have their illnesses. I know that I am not relaying any new information as far as the connection between chronic illness support and social media is concerned. However, I can tell you a little bit about how it has helped me, seeing as growing up there was no one in my life that had this.


As my condition progressed into my teenager years, I started to feel especially alone with my thoughts in regards to my chronic illness and the feelings it caused. Nobody around me could truly relate; while people can be empathetic and supportive, there is nothing like speaking to another patient who experiences the exact same symptoms and feelings that you do. Until about my freshmen year of college, there was a large gap in my life as I had no contact with any other person with my chronic illness. Then came the acceleration of facebook and other social media tools of the like.


A few years ago, I became heavily involved with some KTS support groups, prior to starting my own blog (which I have since deleted). However, I cannot emphasize enough what a cathartical experience this has been for me. Honestly, there are times when I feel like confiding with my same illness peers has helped to save my life in regards to my emotional well-being.


I feel privileged to live in such a time where resources such as skype and facebook (among an array of many other social media tools) have become widely accessible to people of all origins.

Rational Fears and Chronic Illness

Some anxiety sufferers experience irrational fears along with the rational ones. However, for now I am going to shove the irrational ones aside. People with a chronic illness need to learn to live with a future of medical instability to a much higher extent than those without one. When our health is constantly in jeopardy, how is one expected to not worry about their medial well-being?

With my condition, I get sporadic and spontaneous cellulitis infections that are often severe enough to require hospitalization in order to receive immediate IV treatment of the area. I just got home from the hospital yesterday after coming down with a bad infection Monday night. Just Sunday, I was out enjoying the day and feeling better than ever. When I woke up Monday, I felt the familiar pain of an oncoming infection, it resembled that of my more serious ones I have had in the past. The pain soon got out of control as the systemic symptoms began to kick in; it was time to venture to the ER of Children's Hospital Boston yet again.

Prior to this, I had not been infected for a total of 6 months for a cellultis infection, an extremely lengthy period of time given my past history with them.

In the past few months, people have asked me how I am feeling, and I have always told them that as far as my condition is concerned, I have never been in better shape. In many ways, this was the truth as a pain medicine I have been taking for my chronic lower leg pain (meloxicam) was working wonders. Yet, behind my words and positive front there is always a deep-rooted concern that lingers inside, a fear that maybe two hours from now I could be on my way to the hospital in striking pain.

In October of last year, I had been in my school library studying when I suddenly felt an oncoming infection; it was literally within a moments notice. Then, the pain worsened and my systemic symptoms started to follow; it was vital to get to the hospital right away. Any lost time was a chance for the infection to dwell deeper into my body, not treating it in time could lead to sepsis (which I've only had once as a small infant).

There have been numerous other places where I have come down with these infections; one of the more notable times was when I was on a cruise in the middle of the Caribbean Sea. Just like all of the other infections, I had been fine one minute and cellulitis stricken the next. So how do I not worry about the possibility of an oncoming infections when they arrive with no warning and such paralyzing intensity?

***

Haha me @Children's Hospital Boston the other day.
Getting to come home * tomorrow *
( = 

Here at Children's Hospital Boston being treated for cellulitis in regards to my KTS. Several administered IV doses of two antibiotics later and systemically I am feeling a little better. The infection is also continuing to decrease it its intensity.

Coming here the other night, I felt so systemically horrendous; not to mention the pain from the infection that plagued me but I am now on the path to getting well and am very grateful to have that opportunity. It bugs me that there are people around the world who are not as lucky to have access to the care I do. As much as I utterly despise being here, I know I am fortunate and don't want to take that for granted.

Jack Osbourne, "Adapt and Overcome"

Today in the media, I saw several entertainment headlines stating that Jack Osbourne has been diagnosed with multiple schlerosis, shortly after giving birth to a baby girl two months ago with his fiancee. In one article, he made a statement (in regards to his new diagnosis) that caught my eye:

“I got really sad for about two days, and after that I realized being angry and upset is not going to do anything at this point — if anything it’s only going to make it worse,” Osbourne told Hello! “Adapt and overcome’ is my new motto.”

I know very little about the Osbourne's family and Jack himself but I was so awe struck by his words that I cannot help but admire him in how he is coping with all of this devastating news. Sometimes it is so easy to fixate on those negative questions in your head that repeatedly tug at your mind – why me? Why now? Why this?- when it comes to medical issues. It can be so easy to dwell on the misfortune of having somehow acquired the problem in the first place that sometimes people forget to reach above and beyond it. The grieving process is certainly an essential part of coping with any illness, and it can come and go in waves, but it is severely problematic if one gets stuck in the grieving process permanently. Eventually, it is important to recognize the situation for what it is, to look at the reality and then decide how to proceed with your life in the most productive manner possible given the circumstances.

It's awesome that Jack is being so open with the emotional aspect of his diagnosis, hopefully his words reach others in similar situations and can inspire them to adopt his motto of “adapt and overcome.”

Chronic Illness and Depression

According to WebMd: In people with chronic illnesses and depression, patients themselves and their family members often overlook the symptoms of depression assuming that feeling sad is normal for someone struggling with disease. Symptoms of depression are also frequently masked by other medical problems, resulting in treatment for the symptoms -- but not the underlying depression. When both chronic illnesses and depression are present, it is extremely important to treat both at the same time.

Around my junior year of high school, I knew I had developed some level of depression. However, this was also the time I was getting shuffled in and out of the hospital the most due to cellultis infections in regards to my chronic illness. Because of all the was going awry medically due to my chronic illness, it became very easy for me to hide the underlying despair I couldn't seem to shake. In retrospect, I wish I had opened up about my feelings before they all boiled to the surface years later. Depression wants to keep you in, but it doesn't have to. Telling someone that you are feeling glum is the first step in fighting the battle with depression and essential in beginning to gain some of your former self back.

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. 

Here is a picture of how the infection is healing. While these pictures are not of great quality, the main difference is that the area is less inflammable and the red has gone from that of a fiery color to purple (the purple left now is a result of blood pooling the area).

A picture of my most recent infection that I currently have. As far as systemic symptoms go, I have very little other than a general feeling of lousiness throughout my body. The area is sore but not severe enough that I would seek medical attention for it unless it doesn't show any signs of improvement over the course of a few days. 
(Some of the deep purple is normal)

Did you know that 96% of chronic illness is invisible?

http://www.invisibledisabilities.org/        ( :

Easier said than done, right? Try to love your body for what it can do as opposed to resenting it for what it cannot.

It can be scary when you feel as though you can no longer trust your own mind, as though your thoughts are their own web of deceit in which is constantly trying to trap you. Anxious thoughts, as I have come to understand and learn, are fueled by the panic in which we create in our own mind. From my readings and own experiences on the subject, I have come to learn a few basics which are good to know if you do in fact struggle with some level of anxiety. First off, know that everyone has bizarre thoughts, things that may seem out of the norm or just downright insane.


Everybody has these, but not everyone has the panic that results afterward. Basically, a person with a high level of anxiety will look at these thoughts and think “Why am I having these thoughts? What is wrong with me?” You will try to analyze these non-meaningful thoughts, whereas a person not struggling with anxiety will see them for what they really are- thoughts that hold no meaning whatsoever. They will be able to continue on with their lives in a peaceful state of mind while your mind fixates itself on the thought- fueling a great deal of inner turmoil anxiety wise. When having thoughts like these, it is best to try and remain calm – of course, as with almost everything in life, easier said than done. However, by recognizing the thought for what it is (essentially nothing of meaning), you are helping to relinquish the grasp anxiety has on your mind. The less meaning you give them, the less scary they will become overtime.

If anyone of you do that deals with anxiety of a higher level happens to come across this, I hope this was somewhat of a little help.  

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.

<3