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Support

Lamariposa
  • By Lamariposa
  • Posted April 25, 2008 at 10:30 am · 15 replies
  • Shared with the public
3 Recommendations

My husband was diagnosed with VHL in 1996. He recently went through his 4th surgery and is starting to have a difficult dime dealing with everything. I am as supportive as can be. However, he thinks that because anyone who try’s to talk to him, have no clue what he is going through because we don’t have VHL. I really could use some advice on how to help him deal with this. I also have an 11 year old, and 5 year old, that I have to worry about as well. He keeps thinking that they have the disease and it is all of his fault. Any advice would be great.
Thanks Much!

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Cancer Surgery Pain Depression Stress

15 replies

batley

hi its always hard on the other side of it , i would just say lisen to him and what he fills and try and make some friends whos livin with vhl on the partners side of it , you also need suport as well as for passin on vhl its no ones fault i blamed myself as well but it happens and we have to deal with it the best we can because blame dont take it away i often hear my sister in law say what u have said but she talks and says her worrys then goes back to deal with it with her husband <my brother> sometimes things get said we dont mean i hope you get the suport you need as well hang in there

Lamariposa

Hi. Thanks for the advice. You are completely right. I always try may hardest and will continue. That is all anyone can do. Thanks again..

CathyDHood

You are very brave and must be a strong person. I was also diagnosed in 69 but have had several more operations than your husband. If he is not on anti-depressants he should talk to his doctor about them. If he is maybe he should talk to hs doctor about additional meds or changing some..I will pray for all of yur family each day that he can get thru this. I know how he feels. If anyone in my family gets this crap I will have a difficult time. But the bottom line is to take care of my family regardless if they have VHL or not

Sincerely
Cathy

joyceg98

Sounds like he needs to talk with someone, and/or get some meds. But meds for depression are most helpful when they are prescribed by an MD psychologist who will also counsel with him and help him work through it.

When we hear that a child has VHL (or any other medical issue) there is a grieving process that we go through, a normal part of which is feeling guilty. It's normal -- but just don't get stuck there. Get THROUGH it and out the other side. You didn't give it to your child on purpose, it was entirely involuntary -- like eye color or other genetically passed characteristics. You couldn't choose -- you would have chosen differently if you could!

So now you simply get to deal with it. If you wallow in guilt, you will make yourself miserable, and everyone else around you too. Best to teach yourself and your child that there are things that happen in life that we cannot control, but we can make the best of them and work with those characteristics and stay as healthy as we can through our actions.

We can't choose our genes, but we can choose our actions.

All the best,
Joyce

sgtnutz

hi everything you said about your husband, is what mine says all the time! And at first i felt sad all the time for him and babbed him , but that got old fast, i love him very much and i wasnt helping by treating him like a baby, id do every thing for him ANYTHING! he didnt have to get up ,just to go to the bathroom, well we also have 2 kids and they started thing i should be like that for them aswell, So i had to start tough love and when he started feeling sorry for him self and not wanting to go on , i just became a snot, i had to he was being foolish, so when he says he wants to die or kill himself, i would tell him to make sure that none of us are home when he did it!! Of course i dont mean any of that but when i say stuff like that he starts to think about how good his life is and can still be. Its been a very hard 5 years but we have learned to think positive and to make alot of jokes !! It helps our family a great deal!! good luck!!

kleineflute

Both of you need support. You are different people, viewing this disease from opposite sides of the same coin, though the difficult problem is carried by both of you. I have VHL. I also feel that someone without the disease cannot understand my inner thoughts, though I totally understand family members/close friends will be tested to the limits of their ability to cope by VHL, and carry a heavy, heavy burden. I belong to a support group in my home town of Cleveland, OH. This group, for people who are suffering illness, meets at the same time as a group for family members in the same location.

I have looked and found two centers near Milwaukee that may offer support groups:

* Gilda's Club Southeastern Wisconsin
P.O. Box 11757, Milwaukee 53211
Phone: 414-962-8201
www.gildasclubsewi.org/

* Stillwaters Center
434 Madison St., Waukesha
Phone: 262-548-9148
www.stillwaterscenter.org

If this sounds helpful, please call them.

Kathleen.

batley

i myself think both sides are brave im the vhl side sadly my marrage didnt work threw it in end i was made to fill it was wrong to bring vhl in the family i was never allowed to talk about vhl or how i felt but little did he know i understood what he was goin threw , he use to say to he knows all he needs to know about vhl and dont see why we should talk about it , or read up on it nothink was allowed , but i did myself and kept it to myself , when my marrage broken down this man was so angry with me and still is two years on , for them who stand by there partners in a marrage with vhl i praise you all you do fill it as well i do beleave this , its not easy for us with vhl but beleave me when i say its so not easy on your own and dealin with your kids on your own as well ,it doesnt have to distroy everythink in your life if you work together

joyceg98

Great suggestions. People with VHL might want to find a support group for people with cancer. They will find people there with similar issues. Even though many VHL tumors are not cancer in the same way, they are still an ongoing life-threatening situation with similar emotional impact.

The caregivers (carers in the UK) also need support. There are good organizations for caregivers as well, which you can find through a nearby hospital, or through websites like..
http://www.wellspouse.org
http://www.carersuk.org

Also, in Orlando on June 28 we are having a wonderful speaker -- Dr. Gary Wood from Tampa. Gary has VHL himself, and his daughter also has VHL, so he does understand. After his presentation, we are going to break into three groups: adults with VHL, adults without VHL (caregivers and friends), and children with a without VHL. Each group will have a professional facilitator, organized by Dr. Wood. Each group will get to share their particular issues and concerns with their group of like-minded folks.

We did this once before in Bethesda, and the feedback was excellent. If you can come to Orlando to join us, please do! And if not, be sure to check out the online resources both here in our discussion group and in other caregiver groups in Inspire.

You are also welcome to phone us and ask us to put you in touch with someone else with similar issues that you can speak with on the phone.

We have both patients and caregivers who volunteer with us who are very willing to speak with others on the phone. Believe me, it makes a huge difference to get someone --patient or caregiver -- to see beyond the shell of pain that can develop around you. Been there! I went nearly 30 years without ever meeting another person with VHL, so I know how it feels.

Knowing all of you has made an incredible difference in my life!

Love,
Joyce

Lamariposa

Sorry I didn't reply back to you. I think I was kind of spaced out.. I understand what you are saying about guys. My husband won't really talk about it and when I try, he closes up. I really think men just think that if they don't pay attention to it that it will go away on its own... I am sorry to hear things didn't workout with you and your husband but, maybe it was for the better. I can't imagine you need anymore stress then what you already have. If you need to talk just shoot me an post... Good Luck!!!

gale

Your husband might not be able to change his genes or the genes of your children, but he can sure change what goes on in everyone's life on a daily basis. Be empowered by what invades the senses. You have control of seeing, smelling, tasting, hearing and what you touch. This is empowering, unless taking a path to least resistance is where he wants to be.

If he doesn't work and is maybe retired, he should thank VHL. There is a positive side to everything if you look hard enough.

I have VHL and was diagnosed 32 years ago. My father died from complications due to VHL. I don't blame my father. He didn't give it to me! I inherited a faulty gene. Not his fault.

My brother also died from complications due to VHL. My brother saved my life, I was soon tested.

Your husband is having a pity party. There is so much more he can be doing now. Even though his life may now be different than what he is used to (who said that was right) it is definitely not over. With two kids and a wife he is being a bit selfish.

Have him cry, brush himself off and take a new direction in life. What has he learned, what can he do, how can he help others and help his family at the same time.

LIFE IS NOT OVER BUT MAY NOW BE DIFFENT!

If you can't change something, move on. Change the things you can change.

There are plenty of us that are in a similar situation as your husband, we understand how he feels. It's been 5 years. Does he want to live the rest of his life the way he feels now? Why has he survived?

"If you always do what you've always done, you'll always get what you've always gotten."

Sorry for the soap box, but I've been there.

Gale

carys

Hi Gale.

The similarities between what you are going thru and what I am going thru are amazing. My wife's name is also Gail. She moved out about a month ago.

I have had two tumors removed from my brain stem, my kidneys removed, and a recent bout with flesh eating bacteria. My wife has had a terrible time dealing with my health issues and she moved out because she needs "space".

About the best thing I can offer you is to just listen to your husband. Just reinforce what he is telling you. Make sure he understands how interested you are in what he is dealing with. You do not need to give him any advice...just make sure he knows you get what you are telling him.

And if it gets bad you can write me anytime...or call me at 505-362-3558. Good luck! Cary

Nelsonb

Lamariposa, his own children can be his own key to understanding why he should not bury himself in guilt.

What if one of his children, or both, turns out to also have VHL? Would he blame them? Of course not. As a caring father, he would have compassion for them, help them to deal with their VHL problem just like he would help them through any other problem. And he would help them to see and enjoy whatever wonderful things life brought across their paths while they had the chance to experience and enjoy them.

Then he should remember that he was once that same child. Would it have been right for his own parents to blame him for having the VHL that he has? Of course not. And neither should they blame their own parents.

There is no blame.

And so he has VHL. That's not the best news to discover, but it's also far from the worse news. If there is such a thing as "heaven on Earth", I think we each make it so ourselves. In other words, life is what we make it.

And I don't know a single person without several problems, so it seems to be worth realizing that life is what we make it WITH our problems. Both physical and emotional.

I do believe in a supreme being of some kind. But even so, for all I know this life I'm experiencing now will be the only conscious life I will ever experience. To me, that alone makes it extremely precious. So I better keep my butt in gear and see the beauty of it while I have what may be the only chance I'll EVER have.

And does your husband have trouble finding the beauty in life? Oh my, it's everywhere! I think of all the millions of stars and planets that are nothing more than barren clumps of rocks.

And then I think of Earth, with an abundance of trees and flowers that blow in the wind and shine in the sun and with each having a way to live its own life and reproduce itself with its own "children". And the diversity of birds that fly-FLY- their own bodies through the sky, with each singing its own little song and having its own unique way of life.

To me, just the fact that Earth exists is a beautiful miracle, and all of its life helps to make it such a beautiful miracle.

And all that life is in such balance that it perpetuates itself. That balance is, of course, mingled with conflicts constantly. But as long as we humans don't upset it too drastically, the balance will continue nonetheless.

Your husband needs to find the balance in his own life, despite his conflicts. He is a part of this rare and beautiful miracle that he may never get to experience again.

All it requires is seeing each part as part of the miracle. Look at all those stars in the sky, all or mostly just baren rock. Then look at the trees, the flowers, your spouse, your children...all miricles in themselves.

Once one starts seeing, you find yourself feeling love and compassion for them. Then you find that love and compassion makes it even easier to see more clearly, to see more of the beautiful miracle of all existence...despite its conflicts.

See, and enjoy, and love your chance to be able to do so.

Nelson

teray

help my significant is really sick from vhl . There are days, weeks, months he physically cant stay out of bed had a pheo 10 years ago now its back but they cant locate it has cyst in brain and trouble with arms and legs!

TinaDiane

Sorry for your pain. VHL can really be difficult.
Do you get care at a Center where they could do a MIBG scan? This scan is specific for pheos. They give you a radioactive substance that is attracted to pheos and when they scan you the next day, the pheos should show up. Sometimes they need to scan you a few days after also. It is a very expensive test and they don't do it everywhere.
Good luck to your family,
Tina

vickie2327

Nelson, if ever you write a book, please let us know.
Some of us are not able to express ourselves in such a powerful way. You speak to my heart!

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