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AVM Survivors Network

One year today since the "Big Bleed"


#1

So today has been one year sinced my stroke and the day that my life changed forever. I have mixed emotions now. On one hand I’m extremely grateful to still be here with my husband and wonderful children, many doctors have told me I’m a miracle. On the other, I’m finding it more and more difficult not to get depressed. Depressed over all that I have lost and for the independent person I once was. Some of the things I most loved to do before my injury I am unable to do now. The financial burden is huge. I was the primary support for the family after my husband, who was once a builder lost his job 2 years ago and of course the health insurance was gone when I was no longer able to work. I was denied Social Security disability benefits, so now I’ve got to get an attorney to help me. If I ever get benefits, it’s probably going to be at least another year before I see anything. It’s frustrating when people see me and think that I am just fine. No one knows just how messed up I still am and may be for the rest of my life. I am so very glad that I found this site and for the wonderful people I have met here. it gives us all a chance to vent when we’re not feeling particularly miraculous anymore. So thanks for the support fellow AVMers, it’s much appreciated.


#2

Hi Trish,

What an anniversary… as you say, both good and bad feelings surround it.

Thank you for sharing your thoughts. As the relative of someone who’s dealing with this it helps me so much to hear about the things Nea is experiencing. She, too, mentions being frustrated that people just don’t “get” how this affects her. That since she seems fine everthing’s back to where it was prior to her bleed.

It’s hard enough to deal with this without the additional stress you are dealing with. I hope you find a solution to your insurance and financial issues.


#3

Congrats on the one year Anniversary! Not an anniversary that you wanted to add I’m sure, but at this point, one you can be so thankful to have the opportunity to see!
It’s unfortunate that all of the rest of that stress and burden is something you have to deal with on top of the AVM. As if its not enough on its own :slight_smile: I feel for you on that part. While I don’t have anywhere near the ugliness of a SS denial, I did get denied from my HBOT reimbursement which was a big financial stress for me last year. So I can relate if only on a very small scale!
I’m always amazed at how you brainers have to face so much at once…never knowing about the AVM, being a normal, healthy person…and then your lives get turned upside down. But the most obvious commonality is the strength that everyone finds to fight, to rebuild, and to be happy. The reasons to become depressed and down are numerous…but so are the reasons to be inspired. And this site and these people, all of us, are such a reminder of that. And that is my favorite part of this site!
I hope you have something fun and full of life planned today to celebrate with your family!


#4

I too fight not to become depressed. I’ve been on SSI since my surgery that left me paralyzed on the left side and was denied twice. Hire an attorney. It seems the only way to get approved!! We have really never recovered from the medical bills from my surgery. My hubby lost his job back in Oct. and just recently found a contract job which ends on the 21st of this month.


#5

trish,
it is only normal to have mixed feelings and emotions and of course grieving of loosing what we once had seems to be a big one…but i am glad you are here with us as is your hubby and children and just think the hardest year of your life is over…congratulations one year is a huge milestone…the next year will be easier


#6

think it’s normal to do a little mourning for your old life while celebrating your new lease on life, Trish. I sure do miss the old independent me!

But just don’t forget to celebrate how hard the new you worked to get where you are now. And every year on this date celebrate the things you’ve accomplished since the previous anniversary!


#7

Hi Trish, I’m really glad that you can celebrate your one year anniversary. I had my craniotomy in 98 and it was like I didn’t exist for about 2years thereafter. I was a walking zombie, but very glad now to be here with my husband of 25yrs, and to talk to my children and grands. My doctors also put me in a coma like state. I didn’t have a bleed, but they seem to think I was so very close. When I filed for ssi was when all my depression started back in 2000 and it really got bad, I almost had a nervous breakdown. I kept reappealing for approx. 8 yrs. My depression got better after I stopped appealing. It was overwhelming for me to fill out all the paper work. If you can you need to get a lawyer. If I would have continued maybe by now I would have ssi, oh well. It’s a good thing my husband has a good pension plan and in about 2 yrs he’s retiring and we are looking good, but unfortunately a lot of people who have been through what we’re going through aren’t so luckie. Hang in there Trish and one day the light will shine very bright for you.


#8

I think that what you are feeling is totally normal and part of your healing process. Again this is a prime example of how there is just not enough support for people like you who have gone thru something so traumatic and life changing. It is hard enough these days to stay positive in this crazy world we live in without the things that you have to cope with.
I’m sure you have good days when you are incredibly thankful and bad days when you ask yourself -why did this happen? Everyone has those kinds of days but YOURS are just magnified with SO much to deal with and you need to give yourself credit for surviving and coming so far.
Have you read that book, My Stroke of Insight by ?? that we mention on this site often? Her story sounds so much like yours! Maybe it would make you feel not so alone in this journey because your recovery is far from done no matter what the doctors say and you need to keep your fighting spirit going!!! And sometimes reading that another person has felt exactly how you feel is just so helpful- at least it is to me.
I am thinking of you Trish. I wish there was more that we could all do for each other.
One more thing… WHY or WHY do you have to fight for this SS benefits!!! That makes NO sense to me.


#9

Thanks everyone for your support and kind words. Joy, yes I have read My Stroke of Insight. I found it only marginally helpful. It was a bit too existential for me, but I did find it useful in terms of knowing that Dr. Taylor recovered completely over time. As to the SS benefits, well they found me to be capable of doing some sort of work, even though I can’t drive and can in no way take public transportation without getting lost and having a panic attack. If you look at me, I in no way look at all disabled, I’m quite physically fit. I have just hired a lawyer so we’ll see what happens. It will take a really long time but hopefully it’ll happen. Also, my husband has found work with wonderful benefits that will kick in within a month. Of course, the whole pre-existing condition thing may prove troublesome, but it’s a bit of a load off our minds.


#10

Congrats on your one year anniversary. I know how you feel when you said people just dont understand what you are still going through .I am going through the same thing with alot of our friends they all think my 21 year old daugther is fine now that she uses a walker but she to still has along way to go. The only advice I can give you just take it day by day or as my daugther says baby steps.


#11

Trish,

My neurosyc. doc at Mass General, my Speech/Language Pathologist, my employer and my Primary Care Doc helped me to get on Social Security. I had my Brain Bleed on 12/23/07. My Social Sec disability started right about the 6 month time after my injury. So someone is no helping you. This is crazy that you are not on Social Security Disability now! My daughter worked really hard to make sure all the above people sent information to Soc. Security to get me started. You can’t do it because you have a brain injury…someone else has to do it for you. Also, if you have a lawyer, ask them to fast track you with Soc. Security.

I was a very lucky lady that everyone worked with me to get me on Disability! But we also had to fight really hard!

Even so, I miss working…I have depression for many other reasons. It’s so hard to not be normal when you have a brain injury.

You and I have to hang in there…there is nothing else we can do!

Hang in there Good Friend,
Louisa


#12

Thank you Louisa for the info. I’m hoping the lawyer will be able to help but still I think it will be a long hard battle, but one I must continue to fight. It is amazing that you were able to get it after 6 months. It took me that long to find out I was denied, but I think every state is different. And yes, I miss working so much also and never thought I would. Hope you are well!


#13

Hi Trish, I’m glad you are still here. I know how it feels to look well and people think there is nothing wrong with you. Oh well, we know that it is a hard road, thank God we have each other.
I have worked from home the last several years so I’m use to being in the house, but I sure miss being able to do the things that I use to do. I still have a lot of uncertainty ahead of me, avm still there and GK and the wait. At least you are on the mend, I’m sure you will get better and better and learn to deal with the things that are different. I’m glad your husband has found work. Insurance and finances have been difficult for us as well, but we are managing. I know people say stay up and happy, that’s good, but I also think that i is good to go with it when you are not feeling so happy, that helps to keep your happiness genuine. It’s okay to be down sometimes, it’s normal.

Peace,
Ameenah


#14

Hi Trish,

Good luck with your battle to get social security. I read your profile, and I agree with you about not sweating the small stuff. I have gotten better about that through the diagnosis and surgery that I had. My prayers are with you and everyone else on this site.

Debbie


#15

Hello Debbie. Thanks for your comments. I don’t think I welcomed you to the group since you’ve joined, so welcome! Glad you are making great progress with your arm movement. That’s very exciting!


#16

Just read this wow this is exactly how my husband feels. I hope that he can talk to you and meet you he needs other AVMers support. Your words are amazing and have touched me deeply.


#17

HI Trish, I’ve just read your story and although I’m sorry you are feeling the downside of what we’ve been through, I have to say that I know exactly how you feel. Even though I know how lucky I’ve been to survive and be as well as I am, I get so down because of the vision loss. I’ve lost the left peripheral in both eyes and can’t drive either. I’m always tired, my head still aches where they cut me, I get dizzy and disoreinted and nautiaus when overwhelmed. it sux! Your bleed and stroke was 17 may 2008, mine was 17 December 2008. i still can’t decide if 17 is lucky or unlucky?? I feel myself sinking into a depression that I know I should stop myself from but I just want to be able to do all the things I used to do. Why is it so hard to constantly remind ourselves of how lucky we are and actually believe and feel it?? Hope you are on the up, Caroline xo


#18

I have been reading your old posts as they give me some insight on the hurdles I have yet to face. Your journey gives me hope.