Strength

Have you ever noticed how often the challenges we face also contains a blessing in disguise? If not, perhaps you haven’t been looking closely enough! Granted, life’s challenges usually seem like inconveniences when they interrupt our schedules, or get in the way of something we want to do. Isn’t that part of the reason we call them challenges? When we’re working toward an important goal, the last thing we want is to face big, unexpected challenges or obstacles . When that happens, it usually means a major delay, added learning curve, greater expense, or some other unplanned complication. When we are focused on results it is hard to appreciate the detours caused by new challenges. A lot has been going on around here lately and I thought I would check in with readers, tell them where I’m at right now, where my focus is, and give you an update on where this space is heading. Sometimes it’s so hard to pen down your thoughts because even words aren’t enough to describe the way yo...

Life isn't about waiting for the storm to pass. Its about learning to dance in the rain... Depression   is a mental health disorder. Specifically, it is a mood disorder characterized by persistently low mood in which there is a feeling of sadness and loss of interest. Once you stop believing in a better tomorrow, you’re in trouble. Mood Swaying is the proof that I have always rebounded from depression. “On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that’s pretty good.” From the outside it may look like malingering, bad temper and ugly behavior – and who can empathize with such unattractive traits? Depression is actually much more complex, nuanced and dark than unhappiness – more like an implosion of self. In a serious state of depression, you become a sort of half-living ghost. So how is this misleadingly named curse different from recognizable grief...

Hemophilia and Social Security Disability “Not every Disability is visible” "Its not our DISABILITIES; Its our ABILITIES that count" Hemophilia is a group of genetic disorders that affect the blood’s ability to  clot normally. Those with hemophilia have to be careful to avoid situations in which they could be cut because they have a difficult time stopping bleeding once it starts. Those with hemophilia don’t necessarily bleed more severely than others, but they tend to bleed much longer because the blood does not effectively clot. People with severe hemophilia can bleed for several days – or even weeks – from cuts and scrapes that would be considered minor for those without the disorder. There is currently no cure for hemophilia. It can be treated by factor replacement infusions, which medically add the blood factors that aid in clotting and coagulation. Depending on the type and severity of hemophilia, infusions may be given regularly or as needed. ...

For many people with   bleeding disorders , pain is a part of daily life. More than an uncomfortable annoyance, pain can affect every aspect of daily life—the ability to work a full day, attend school or engage in routine activities. Pain can limit physical abilities and dramatically affect relationships. Every person with a bleeding disorder deals with pain at one time or another, often less than effectively. As a female bleeder (factor 5 deficient) - “It’s at the point where I’ve learned to live with the pain and live a anxiety and panic free life."  “Very little is needed to make a happy life; it is all within yourself, in your way of thinking.” People with bleeding disorders should remain alerted when it comes to new or different pain. New pain could signal a bleed or an acute pain that needs treatment before it becomes chronic. Recently, a few days ago I suffered from acute pain in the stomach at midnight. Immediately my dad rushed to bring in FFP (Fr...

I as a female sufferer (factor V) attended my first Global National Member Organization training and World Federation of Hemophilia’s World Congress held in Orlando- USA, which was the combined conferences of NHF and world congress in which largest gathering ever of people with bleeding disorders took place. It was an unforgettable experience of community engagement and education. I got an opportunity to represent India in the Opening plenary session with NHF in Global NMO Training. My topic was Gender Equality in Bleeding Disorders Organizations; it was such a pride in representing this topic as this was a topic which has compelled everyone to think in that context, because the content has the power to influence hearts and minds and I believe this content can be used with regards to improving the quality of life for the international bleeding disorders organization. GNMO training continued for the three days and getting knowledge also continued. It was a great experience to l...

       This year, i.e., in 2016 for the first time I am going to attend World Congress of Hemophilia going to be held at Orlando in July. As I am the ambassador of MyGirlsBlood.org, Ms. Cheryl D’Ambrosio gave me the responsibility of the Women with bleeding disorder section at the booth which is going to be set up during the world Congress. My father always encouraged me in my journey in Hemophilia Community. I am an Indian woman who believes in demonstrating to others the importance of equal rights. And my vision is clear to spread the message that “Women can be Bleeders too”: So working as a team leader in the Women’s booth in World Congress will be a great platform for me to step ahead in getting accomplished my goal.               I have also been selected for Gnmo training conducted by World Federation of hemophilia. In this training, candidates chosen from different corners of the world are train...

Here the journey continues of learning. I was the girl who was not allowed to go anywhere alone. My dad didn’t allow me to go anywhere alone. As I attended all the regional workshops alone in 2013-‘14 to get experience of the working of the women’s group of HFI, after that I was fully confident that now I can go anywhere alone and my parents also were confident after that they can send me alone as now they saw that I can handle things on my own in all the aspects. So, I went to Philippines to visit Andrea Echavez on 12 th July 2015. She is a vWD. She suffers from menorrhagia every month. It was a great trip of 6 days. I learnt communications skill and strategies from. I learnt the ways of dealing with bleeding and work, simultaneously. It was a great experience for me, “pleasure with work”. I lived with her in her house and spent lovely time with her family. I also attended the successful twinning program conducted by Philippines association. It was indeed a great experie...