Replies to This Discussion

Permalink Reply by Marcia Frost on August 21, 2009 at 7:04am

Thanks Amanda.

Marcia

Permalink Reply by Kim P. on August 22, 2009 at 1:33am

Marcia,

I thank you so much for your concern. It makes me feel good knowing someone knows how it is. What I did was print out this thread and put it on him pillow. I didn't say a word about it. The next day he apologized and said he was going to work on his attitude and was sorry for not being more understanding.

I do what I can now, and I try and go rest when the pain gets too bad but sometimes you just can't quit what you're doing, like dinner or when Mom needs me. She's getting sick as we speak, which means I'll be up and on call round the clock. She knows I'm sick, but she's sicker and she needs help. Being an amputee makes it hard for her to do a lot of things, especially when she is sick.

I'm learning though. I was never a cook, in my past life, and now I HAVE to cook. My poor family. :-) I getting the hang of it and am learning some tricks even to help save time and energy.

The thing is... I'm scared I'm going to bleed. It's been 9 years now since my last bleed and my pain and sound sensitivity is getting worse and doesn't seem to want to let up. If I go down there isn't anyone to take care of Mom and I won't have her go to a home. That's not how I believe.

Anyhow, another day, and another sink full of dishes done. lol

Keep your chin up and your AVM silent.
Kim

Marcia Frost said:

Kim,

Sorry to hear you're having these problems. Is there a local person-to-person support group you can tap into? My sister has a severe nerve disorder (following a motorcycle accident which smashed her knee cap and tibia), so she and I can communicate, commiserate and support each other emotionally when needed -- by phone as we live a thousand miles apart. But sometimes it would be nice to get a hug.

It worries me when you write you try harder, get less sleep and run yourself into the ground. Exactly the opposite of what you need!!!!! Find a way to set bounds -- for yourself and if necessary for your boyfriend. Make rules for yourself -- I won't work past ..., I won't get less than --- hours sleep, If --- doesn't get done, I won't worry, do it, etc..

Maybe if your boyfriend does to the doctors with you one day he might better understand your limits....send him to this site to read some of the stories people tell. [This is what my sister did when we all thought she was making more of her disorder when we thought she should have recovered from her injuries.] You've been together along time, so hopefully he can understand what's really going on and how he can help you stay safe and healthy (physically, emotionally).

Take care,
Marcia





Kim Palmer said:

Marcia,

I find I have a lot of similarities with Lianne about how I deal (or not deal) with my 'unknown'. I stopped being verbal about it long ago to any friends or family, I keep the internal dialog just that, internal. It has not had a good effect on my personality. I often find myself thinking things like... how can so-and-so be talking to me about... or asking me to do such-and-such when right now my pain is about a 6 or 7 out of 10 and all I can seem to think is... am I going to have a bleed?

Although I did recently try and talk to my boyfriend about it. He doesn't know how to deal I guess. I met him in 1994 and was in pretty good health. I could hide my symptoms early on because we didn't spend a bunch of time together. Although I hid my symptoms I told him right from the start that I had an AVM and explained it to him. I now know I was wrong in hiding my symptoms. No one likes a wet blanket and now he's experiencing me not at my best.

For the past 6 months or so I seem to be having a very bad time neurologically and I'm not getting everything done around the house that I'd like to. He's noticed and doesn't understand. So I try harder, sleep less and basically run myself down trying to keep up and please him. I've basically come to a decision that I'm going to only do what I can and then I'm going to rest. No housework is worth a bleed, or worse, in my opinion.

Sorry for the rant, thanks for listening.

Permalink Reply by Marcia Frost on August 24, 2009 at 3:24pm

Kim,

Sometimes life doesn't treat us well, but then we're the luck ones w/ AVMS that haven't left us paralyzed, etc.

I have some suggestions: 1) paper plates! then there are fewer dishes to do, even if you're helping the planet much. 2) Cook bigger meals so you can have leftovers -- if not the same week, then into the freezer and for another time. It doesn't take any longer to make a big pot of spaghetti or a large pot roast, than smaller -- so fave time and mkae life easier.

Give your boyfriend a big hug from me for being more understanding.

Marcia

Marcia Frost said:

Kim,

Sorry to hear you're having these problems. Is there a local person-to-person support group you can tap into? My sister has a severe nerve disorder (following a motorcycle accident which smashed her knee cap and tibia), so she and I can communicate, commiserate and support each other emotionally when needed -- by phone as we live a thousand miles apart. But sometimes it would be nice to get a hug.

It worries me when you write you try harder, get less sleep and run yourself into the ground. Exactly the opposite of what you need!!!!! Find a way to set bounds -- for yourself and if necessary for your boyfriend. Make rules for yourself -- I won't work past ..., I won't get less than --- hours sleep, If --- doesn't get done, I won't worry, do it, etc..

Maybe if your boyfriend does to the doctors with you one day he might better understand your limits....send him to this site to read some of the stories people tell. [This is what my sister did when we all thought she was making more of her disorder when we thought she should have recovered from her injuries.] You've been together along time, so hopefully he can understand what's really going on and how he can help you stay safe and healthy (physically, emotionally).

Take care,
Marcia





Kim Palmer said:

Marcia,

I find I have a lot of similarities with Lianne about how I deal (or not deal) with my 'unknown'. I stopped being verbal about it long ago to any friends or family, I keep the internal dialog just that, internal. It has not had a good effect on my personality. I often find myself thinking things like... how can so-and-so be talking to me about... or asking me to do such-and-such when right now my pain is about a 6 or 7 out of 10 and all I can seem to think is... am I going to have a bleed?

Although I did recently try and talk to my boyfriend about it. He doesn't know how to deal I guess. I met him in 1994 and was in pretty good health. I could hide my symptoms early on because we didn't spend a bunch of time together. Although I hid my symptoms I told him right from the start that I had an AVM and explained it to him. I now know I was wrong in hiding my symptoms. No one likes a wet blanket and now he's experiencing me not at my best.

For the past 6 months or so I seem to be having a very bad time neurologically and I'm not getting everything done around the house that I'd like to. He's noticed and doesn't understand. So I try harder, sleep less and basically run myself down trying to keep up and please him. I've basically come to a decision that I'm going to only do what I can and then I'm going to rest. No housework is worth a bleed, or worse, in my opinion.

Sorry for the rant, thanks for listening.

Permalink Reply by Tammy on September 28, 2011 at 9:34pm

Hi Marcia, My son had an AVM bleed in March 2008. He was treated by embolization that July. In Sept. he started having migraines, come to find out there was another AVM behind the first one. He was having migraines sometime 3 times a week. The Dr's then put him on Propranolol and Promethazine. It helped some but not completely. The Dr's said he wasn't a candidate for a craniotomy so they decided to treat it with radiation. It has been a little over a yr and a half since the radiation and he has only had about 4 headaches since then. In Jan. of 2013 they will do another angiogram to see if the AVM is gone. We have been told that he still a 90% chance of having another stroke and it would probably be fatal. We both have anxiety about it. I watch his every move and he doesn't stay the night with friends or rarely goes away from home for long periods of time. He has anxiety about going to sleep at night. He's afraid that something will happen in his sleep and I won't know. He is seeing a therapist and on an anti-depressant now.

It is normal to go through the 7 stages of grief when you or a loved one has been diagnosed with any type of condition. It will help your loved ones to understand a little better if they go to the Dr or therapy with you. If you can find a support group it would help too. The rehab that my son was at has a group that meets every month for brain trauma survivors. I don't know if you are aware of it but AVMsurvivors.org also has a facebook page. I find it helpful and have chatted several times with another young lady on there. I wish you all the best of luck and if I can help in any way please feel free to contact me. It really helps to know others that know how you feel and what you are going through.

Permalink Reply by Amanda on March 28, 2012 at 5:45pm

My husband has now been told there is nothing at all they can do in to dangerous place, how do you learn to live with it? truly in Gods hands ! we are really rubbish at mo scared beyond believe! xxx

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