Seems as if I’ve lost everything and everyone since this avm became public. Maybe I have pushed them away. I have no one to talk with, I live alone and have since the divorce 2 years ago. I thought I had everything, great wife, home, kids, self employed, very healthy, many friends and too many toys to mention. I began having surgery’s and thought it was only getting better. I started building our dream home myself then about half way through, my wife had an affair with the lumber salesman. I finished the home and tried to repair marriage but it takes two. After 14 procedures and a lifetime script for methadone, I’ve gained 50 pounds and lost most of the body I spent years building. No one calls or comes around. I have always been self conscious about my body and now with scars from stitches, implants, embolization, sclerotherapy and a hard time walking. I doubt my self worth even more. I am becoming a hermit, only going out to work as a delivery driver. There is a lot more to say but I can see this is turning into a whining session. Thanks for listening.
Vince this is the place to moan, whine have a pity party so you go ahead mate.
A lot of us a piling on the weight here think it’s the inactivety that causes it
I am sorry things turned out the way they have for you but try keep your chin up (are you sick of hearing that!) Bloody hate AVM’s turnns everyone’s life upside down
Hi Vince, I know to well about the weight gain,my husband was on that medicine for almost 8 years,next to impossible to get off,he has arnold chiari malformation,a muscle condition that causes a ton of pains,ths doc put him on that med and was hooked on it for so long,he just a few weeks ago got off it but is put on different meds to replace it,Im so sorry about the family mess,I will be praying for a new and much happier life for you,it can happen,pray and think as possitive as you can,God can do ANYTHING!! I have an avm,still active,just found out about it 7 months ago,that on top of my husband not able to walk or work anymore and everything falling down on you,sometimes you think what else could happen,then I think,I am blessed,I have beautiful children,healthy,thank God,I am still able to work,thank God, I have friends here who listen,THANK GOD!! I have today and its beautiful out!! so many things are wonderful,even when so many things are going wrong,I think of whats in my heart!! The love of my family and children and friends and know God will take care of the rest,Please hang in there,Things will get better,im sure of it,Caroline:0)
My thoughts and prayeers are with you through this difficult time. Just know you have friends here. It is hard living with an AVM itself but it is also hard when others just don’t understand it. Whine any time you want we are all hear to listen.
Hello Vince. Hope the day gets to be as good as it can be… That was hardly a rant and barely a whine BUT, I must say that I do see the makings of a good ol’ country song in there. What about that as an idea for soothing the soul and keeping your head above the rest? Be good to you. Take care of you. You are making it so far and I am amazed and impressed. You are in my prayers.
This is not what I consider to be whining…your hurting and upset about how things are going and how your life has turned out. These are important things in your life and you want them to get better. I feel a lot like you feel. I have lost so many friends and to be honest was only married for 4 months when we found out about my avm…and my marriage is pretty rocky with me being sick all of the time. It is so hard because no one really understands how you feel and well we know and can’t really explain it all and I think everyone we know just realizes we are sick and just dont want to deal with it or hear about it. At least that is how I feel. It is their loose and our gain because now you can come here and we can help! We will be your family and friends. I know what it is like to be so self concouis about your body and work so hard and then get on meds and etc and it all seem like it was for nothing. I was in perfect shape before my surgery and…well…now I’m not all! You are worth it and dont let anyone tell you otherwise…your strong and you can make it past this and later look back and be so proud of how you dealt with it. That is what I am praying for! Dont become a hermit…put yourself out there into situations where you dont feel so comfortable. It will push you and make you into a better person. Just dont over do it Dont give up on yourself!!! We now have to work 3 times a hard or more than what we used to…but I can tell you something we are worth it and are so much stronger in every single way possible!!!
It is okay to whine and it is okay to have a pity party as long as your done you feel better! I know there are several people on this website who have all said that there life is completely different after this evil thing called “AVM” it is just a matter of making the new you one you can like. So you aren’t buff or a quick runner anymore, what is important is the inside! I know it sounds like an “After school special” but it is true, no one is going to like you if even you don’t like you! It is hard not being what you used to believe me, I can understand that. I was very active and now, i feel like a lump that is permatently attached to the couch. On a good day I can get out, but am only good for half the day!
Accepting the change is the hardest thing to do, I still struggle with it everytime my kids want me to do something and I say “I can’t”. But you have to make your life worth something! God put you here for a reason, not to have toys or look great, but to be someone!
Okay, now you may have your snack the after school special is over. Now if you can go to my blog and give me a dose of the same medicine! ;O)
I hope things get better for you and I hope that being on this site helps you realize that you are not alone!
Vince: “Been ther done that: God Bless you my friend. Ihave been in recovery since 2006. I too was a big winer luckly I didn’t loose my friends, but nearly lost my mind until I heard this from the clergy, " Thank God for what you have, rather than lament over what you have lost”.Vince my friend we are still alive, and we are blessed with another chance at serving God and our fellow man, And, we have a chance of starting our financial life over again. Lord knows I messed things up the first time. Anyway welcome to survivors, we are here for each other. Try asomething new, ask for a llittle cheese and crackers with your “wine” sit back and enjoy the rest of your life. It is sure to be a great ride. Mike O’Brien AVM Survivor and lovin it! Bless
I want to thank all of you for your kind words,thoughts and prayers. It is so nice to have someone else REALLY understand what I am dealing with. I allow myself to slip into a feel sorry/anger mode, I know it’s not productive and I will try to focus on the positive. I cant find the words to express my gratitude for all of you, THANKS!
We are here for you, Vince. We all get frustrated at times…thank God we have each other here who understand!
Blimey, I thought I had it bad!!
- Your wife was wrong to do that to you. You need the support of loved ones at all times, not just when you have an AVM!!
- Your body can be recovered with LIGHT exercise (I am a fine one to talk as I have put on 3 stone in 6 years!!) Just talk to your doctor first.
- Scars, try bio oil, it works really well at reducing scar tissue (or creme de la mere but is very expensive)
Remember that you have had a really hard time and it is natural to go into yourself at times of stress. Hopefully you still see your kids, so think of them and what your negative thoughts are doing to them. You say that you have a hard time walking. I keep losing my balance slightly, so on bad days it looks like I am drunk! I still walk to the shops every day (to get more biscuits!) normally with a push chair as support or my son who walks really slowly so I get round it that way.
You are still a human and therefore you are worthwhile, we all go through things in life and we all react to them in different ways. Things WILL GET BETTER if you have a bit of self belief. It does not matter that you have put on 50lbs, the person inside has not changed but maybe peoples attitudes have changed towards you.
With regards to people not coming round to see you anymore, there is probably a bit of fear (on their behalf) as very few people understand what and AVM is (I had to describe it as a plumbing installation to my boss) and therefore people do not know how to deal with it. Education is the key.
I am sorry for the rambling nature of this post and I hope that it helps.
In closing, you are too valuable a person just to be left to one side and you need to remember that!
PS. AVMs suck!
I understand that you need to rant… That’s what this place is for. Hope things get better for you soon!.
Thanks everyone! This site is a God send. Ben, what is bio oil? Have you had personal experience with it? I ask because I thought most of the scar ointments were bogus. Does anyone else have any reports on scar treatments? I had a bilateral vein stripping and I think I counted 185 staples, I was counting while I removed them with needle nose pliers, lol. To make things worse my insurance company filed bankruptcy and now I don’t have any coverage. Other companies don’t want to insure me. It eliminated the health plan at work and thanks to me, my fellow employees can’t get a group plan. AVM’s DO suck!
You really are going through it! Despite what people say about the NHS in the UK, you still get treated with no need for insurance! Bit of an arse that you insurer went belly up. Can I ask ‘what happens now?!’
My wife used bio oil after her pregnancy. I suffer from excema, so I have a lot of scars where I scratch and break the skin. Some were quite large and pig ugly, so I gave it a go. It does work, but it takes time. As I said earlier, creme de la mere is also good, but at £100 for a small bottle it is bloody expensive (my wife was given some by the manufacturer where she works).
As it has been mentioned here by others, we are all survivors. In my case I went through a three stage process, depression (why did it happen to me) anger (ffs WHY IS THIS HAPPENING TO ME?) to acceptance (ok, so how can I move on?) Things do get easier, It is a bit like losing someone close to you, you adapt and accept the situation, but it does take time.
There is no right way or wrong way to deal with this s**t, each person is different.
Keep your chin up!!