I have really missed seeing you all! I have just not been well enough to write new posts in quite some time. I've continued to become much more sick over the past several months and have been bedridden for over 16 months now. If that wasn't enough, my family and I have been really struggling in all kinds of ways since my husband lost his job over a year ago. We are doing everything we can to hang on to our home (which is currently in foreclosure status), keep food on the table and make sure all of my medical necessities are taken care of. It has really been a struggle, but no matter what, God is SO GOOD!
To get my mind off things, I wanted to jump back in, try to touch base with you all and maybe post a little here and there, as I can. If I don't, I think I'm going to go stir crazy! :0) For now, I thought I'd start by choosing a few of my previous posts, update them a tad bit and then put them out there again. These posts were/are very important to me. Some of them received a lot of feedback the first go-round and I believe it's because they contain a lot of useful information that's helpful to those who are living with this monster we all have come to know as Dysautonomia.
Here's the first one I chose. I hope you enjoy it, whether you're reading it for the first time or not:
As some of you may remember, my youngest daughter, Rebekah, was recently diagnosed with Dysautonomia/POTS (the same illness I have) last year (2009). Most days, Bekah functions fairly normal for the most part. However, she does have many days when she can't do much more than attend school, come home and go to bed. There are even the occasional days when she can't even do that. She can only stay in bed and rest/sleep because of the tachycardia (high pulse rate), fatigue and nausea that she suffers from. For a 15 (now 17) year old, having a chronic illness definitely puts a kink in your social life.
A few months ago, I found a very interesting link when I was visiting the website, ButYouDontLookSick.com . The link was to a social networking site for young people ages 13-20. It is called STARBRIGHT WORLD (SBW). I went to check it out and I was really impressed. I even thought it was something my daughter might be interested in.
Here is a little info from their homepage:
'Starbright World is a virtual hangout where you can build on existing friendships or create new ones, from home or from the hospital. Starbright World is an online social network where teens (ages 13 to 20) who have serious medical conditions, and siblings of seriously ill teens, can connect with each other via moderated chat rooms, games, bulletin boards, videos, and more.' They have a list of 'some of the illnesses and conditions that qualify for SBW membership':
A – autoimmune disorders, AIDS/HIV, anemia, severe asthma, arthritis
B – burn injuries, brain tumor, blood condition
C – cancer, Crohn’s disease, ulcerative colitis, cystic fibrosis, cerebral palsy, cardiac (heart) problems
D – diabetes (type 1 and 2)
E – endocrine problems, epilepsy
H – Huntington’s disease, HIV/AIDS, hydrocephalus, hypophosphatasia
I – infectious disease, inflammatory bowel disease (IBD)
K – kidney disease
L – leukemia, lupus, liver disease, lymphoma
M – migraine headaches, muscular dystrophy, mitochondrial disease
N – neurological disorder
O – obesity/overweight, osteosarcoma, osteomyelitis
R – respiratory problems, rheumatic disease
S – sickle cell anemia, seizure disorder, spina bifida/myelodysplasia, spinal cord injury, stomach or digestive problems
T – transplants, tumor or mass
U – ulcerative colitis
**Because of the fast-paced nature of an online community, SBW may not be the most appropriate place for teens with developmental/emotional/behavioral conditions. If there is a primary medical condition present as well, we may make an exception, with input and guidance from a parent or healthcare provider.If you have a question about whether your teen qualifies for SBW membership, contact us via the "Report an Issue" link at the bottom of the home page.
Since I found the site, Rebekah has become a very involved member. She has been spending A LOT of time there and has made a lot of really close friends whom she chats with online quite often. As a parent, I really like the site. It is monitored very well by adult 'hosts'; so, no foul language or inappropriate behavior is allowed and any suspicious activity is handled immediately. Therefore, the possibility for adults to be there preying on our children is almost non-existent. In fact, to keep our children safe, a child must have parental consent for membership and the SBW chat rooms are monitored at all times by trained, paid adult staff. The 13-20 age requirement is due to SBW being in compliance with the federal Child Online Privacy Protection Act (COPPA). SBW has also received a positive review from the Common Sense Media, an independent non-profit organization that helps parents manage their children's media lives.
P.S. Since I wrote this post nearly 2 years ago, Bekah has grown extremely close to many of the youth on this website. She has even met some of them in person, with chaperones of course. She has even had the unfortunately experience of one of her close friends dying. So, that is one really sad, but inevitable, reality that comes along with making really close friends there. It was very hard for her, but it really helped her to realize that young people are not invincible like most teens tend to think they are. Although it is a tough experience, I think it was good for her. She has learned to cherish each day as it comes. I just thought I would give you a 'heads up' about that side of it as well.