living with vhl is difficult

• By vickie2327
• Posted June 25, 2009 at 11:00 pm
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In what way has vhl affected your life? There are so many avenues this disease takes that I find it difficult to find a single answer that will fit the response you may be looking for. I feel like my family has been so very blessed, but at the same time I look at my kids and can easily be overwhelmed by what they have endured. I find that living with vhl is never the same everyday, but at times I am just thankful nothing "new" popped up today. We may go for a year or perhaps longer (that doesn't happen often with three of us that have had everything from neuro
issues, including brain and cord, RCC, retinal, pancreas, adrenal lesions, just to name a few).
But back to the point, your main mission in life becomes simply staying healthy. Always be aware of what you feel, if there are any changes- no matter how insignificant they may seem. Never let your drs blow your symptoms off, because that may be one of the most difficult hurdles you face, finding a dr with knowledge of your disease, and if he/she does not know, he/she must be willing to learn with you, and while learning, send you to one that does have knowledge about your disease. You must be your own advocate. My kids are the strong ones in my family. They deal with all that vhl is and does. They are strong, assertive and the bravest people I know.
I believe we are given no more than we can handle, it's just that some of us handle things much better than others.
Stay strong, deal with whatever comes up and remember "This too shall pass".
God bless

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• By diaryofageneticdefec
• Posted June 30, 2009 at 4:14 pm
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well, honest answer is you don't really have much of a choice. As harsh at it sounds it does help me. I think you cope by allowing yourself to feel it and also allow yourself to feel everything else. You can be happy, miserable, angry, scared and obviously so much more. I learnt as an adult to curb my negative thoughts and avoid worrying. I have learnt to, the hard way to go and get tested when those worries won't go away.

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• By Kristel
• Posted July 1, 2009 at 7:18 am
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I think it's one of those things we just have to accept. Once you realize that it's not going away then you can deal with VHL in a productive way. We can either be miserable or we can live our lives in the best way we can and try our best to be as happy as possible. We also have to remember that lIfe isn't about achieving some mythical state of continuous happiness. We just need to strive for quality of life. Find time to do things that make you feel good not just things that make you forget for a while.

I have lost my sight to VHL and one of the things that annoys me is when people say they don't know how I do it or that they couldn't cope if they lost there sight. I don't know if they could or not but I do know that we can always find more within ourselves than we think is there. We all deal with more and live through more and heal from more things we couldn't imagine before they happened to us. VHL is just one more of those things. It is really bad but we can deal with it and we can have a wonderful quality of life.

On a tangible note: A couple of things I have found to help me deal with stress are gardening and knitting. Not to mention, of course, spending time with family and friends. You can never get enough of that.

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