Since my last note to you in April, how has your recovery going? Can you give us some good positives in your recovery that you have seen recently?
Thank Susan T, I think, who reminded me about you recently!
Please let us know, and I hope your recovery will continue on and on and on........
Lisa
Sorry, Darren, because I wrote my last note before I read your last 2 notes. Silly ME!
* Strength From The Spirits From Above
and the
* Power From WITHIN
so much more is possible!!!
Lisa
Hi Box Barge,
Things recently have been rather busy but I do have a couple of positives the first being that my speech has improved a lot in the last month or so and everyone around me is saying that its so much better than it was "still get a little muddled every now and then" but have just learned to laugh it off now lol and start my sentence again if it all starts coming out muddled up, my speech therapist has said that she is very impressed with the progress on that front so that's a good thing :-).
the other positive was I am actually beginning to remember how to play the guitar only stuff with not to many chords to remmeber though but its still another step forward in the right direction.
medication is now settling down as well after all the different changes they made to them "thank god" and not making me feel all over the place now , had a bit of a bad reaction to the dose change a couple of weeks ago which ended up with another trip to the hospital only to find out it was because they had lowered the dose to quickly and gave me bad withdrawels which made me feel like I had , had a seizure of somesort but after lots of tests done it was concluded that it was all caused by the med changes.
got a meeting next week with all the neuro rehab team and people and there going to start working on managing fatigue,memory and cognitive issues so should be interesting to see what their going to put in place there. the things they have done so far are all helping , like playing the guitar and keyboard which I feel is helping to give my brain a "work out" as such lol.
Also been working on things to help raise awareness and support others and to try and get all these things put in place from day one rather than months down the line.
My neuro team asked me the other day "what would you like to set as a future goal" and I said "I wont to work with and help other people that have had avms/aneurysms once im recoverd as no one could empathise more than someone has been there" they said that would be a fantastic goal to aim for. :-)
also had my first ever tattoo done as well in the last couple of weeks for my birthday its to help raise awareness of AVMs/Aneurysms and also as a personal statement to say "YES" I am a survivor :-)
xx
Glad you are doing well, Darren. I think that is a terrific goal. :)
Hey Darren how are things buddy?
After reading your post i can understand how it feels when the world around you seems like its falling apart...as AVMers we need to stay positive and keep strong...as a survivor you need to take that and be grateful every morning you wake up no matter how bad things get as there are many that dont get that opportunity.
I think God has a plan for all of us and as one door closes and no matter how hard things get....another does open and brings much better things...keep the faith brother and God bless...remember you are not alone!
Thank you Dancermom,
I personally think so as well and its something I feel very passionate about doing.
x
Hi Adrian,
Thank you for those kind positive words and thoughts.
And I believe you are very right in what your saying about "one door closing and and other opening"
Thank you for the friend add as well :-). This site is so wonderful for everyone of us to help each other through these life changing events and keep each other all moving forward.and it really is a wonderful feeling to know that none of us are alone in this. :-)
Hi mate I love your " you say "CANCER" to someone they know what you mean you say "AVM" to someone and see what they say ....its always " whats that then "" statement !, I have the same reactions and now I just say brain haemorrhage and they are like holly F*&k ! lol . Anyway I think I know what you mean by your change in personality as I have been going though similar but much more milder I think :) . I'm very snappy and my wife says I've changed and am very snappy and I also speak to her like she's a piece of crap etc .... , Reading this post is a kinda wake up call to be honest, I need to change or try to ASAP, I have AVM removal surgery on the 7th July so I'm not sure how that will go or the recovery etc :( , But I'm hopeful. I really hope you can get the help you need and get on the correct meds for you , Also that you find happiness again !. Take care :)
Darren,
What kind of a wife leave a marriage that only lasted for 16 months??? What a weak person she is! The old saying 'in good times and in bad times', makes me see that she is certainly NOT a committed person. Have time for a little grieving, but PLEASE, eventually, move on to someone who has a BIGGER HEART than she did.
Good, good luck to you, and May God Be With You!!!
Lisa A. Stuckel/Kane
Hi Darren
some people are so cold cruel and unbelievable.
You are clearly better off although it might take time for you to see that.
My son Mark started seeing a girl after his second bleed. He wasn't fully recovered so making bad choices.
She was controlling even arguing with family when we suggested Mark needed to rest.
For Marks sake I explained to her how to deal with Marks epilepsy, then one evening she rang me asking me to fetch him as he was ruining her night out. It turned out to be when he was in an aura prior to a seizure and he couldn't follow her instructions.
She even asked my younger son if he would consider dating her if she dumped Mark because she couldn't cope.
Mark had become vulnerable and regardless of request for help we were turned down.
As we sat around Marks bed after he had just passed away, she was heard saying, 'we were supposed to go on holiday'. She looked out for number one. She put on a display at the funeral and it hurts that someone who knew my son for less than 10 months felt she was so much more important than the reason we had gathered.
Ill never understand some people but don't let her rob you of the joys you have ahead of you knowing the ones you can really trust are those that stay by your side when you need them most.
Hi Martin,
its a very true statement I think, I was only discussing with my mum earlier today about how you can mention "Cancer" to someone and they know exactly what it is. and we got onto that conversation because it was "race for life" day on sunday here in the uk for cancer research, you say "AVM" or "Something to do with the brain" people say "so what is that then" and like you I just say "its like an Aneurysm" there is far to little awareness of it and thats something I plan to change and make the difference not only here in the uk but all over the world.
Ive seen far to many people struggle and cope with this rare thing not only for the person that has it but for the people around them as well to cope with and understand what its all about and it needs to change.
as for what advice I can give you for you to pass on to your wife is read as much and find out as much as she can and above all else "understand" that you are still the same person she fell in love with your just "fighting to get back".
Please keep us up to date on your surgery and how it goes and if you need any questions answering you know where we all are :-) you will be in my thoughts martin and stay strong always.
Oh my gosh--I am post-surgery (5-19-14) and finding myself in similar situation with anxiety and snappy. I didn't think anyone could understand--I try to explain to my family/friends but without success. I am so sorry for anyone to go through this, but am excited by the prospect of someone understanding what I am experiencing. Feel free to email me--would love to speak with you
Hi Lisa, Yes I often ask myself the same things and if things would have been the other way round I would have still been there for her.
I guess in a way the day the vows were taken they didn't mean as much to her as what they did to me, I meant every word I said that day, just a shame the feeling and words said were not mutual.
But hey were survivors for a reason and I'm still here so there must be better things waiting for me in the future :-)
Thank you for your blessings and likewise for you :-) x
Hi Tracey157,
2nd attempt at posting this reply as the first one didn't work.
I am so sorry to read this and here about mark and my thoughts and feeling go out to you and my prayers to mark.
it is awful that there are people out there in this world that can be so cruel, luckily I am happy to say that they are in the minority and there are far more people out there who do care and can love than the ones that cant.
thank you for sharing this with us I am just so sorry that Mark cannont be here to post this experience himself. x
Hi Grandma,
There are many people on here that do understand exactly what you are saying and how you are feeling as we all have first hand experience of all the things you have said and it is a very hard thing to get others who have not had this happen to them to understand what it is we go through.
I have sent you a freind request please feel free to drop a message or talk in chat if you would like I am always willing to help as much as possible with anything.
stay strong and remember you are a survivor x
Thank you Darren.
Mark was the most inspiring person, who cared for everyone.
He would get sick most days and once his sister was looking after him. She asked how he was doing and he replied, 'great cant wait till tomorrow, do it over again' Laughing. Regardless of how much he suffered he would smile and no one is going to rob us of the joy he left behind. He continues to make us smile for the things he said and did and we often will laugh at things because we know Mark would find them funny.
She will not mar Marks memories. But I hope in some way, what Mark had to go through will help others because that is what Mark was all about. He would enter the room and ask if you were alright, did you need anything etc etc so by sharing Marks story its like Mark is continuing to help people like he always tried to do. x
Susan,
Sorry it has been a while, but I have a question.
You mentioned about your anthems about your husband? I looked at your message here again today, and realized that I never heard your song yet. I was not sure HOW to listen to it here.
Please help!
Lisa
Hi Lisa, I just happened to see your message and here is the song. I hope you enjoy it.
http://www.youtube.com/watch?v=nCf2PoTuh4Q
Susan
Hi Darren
Don't worry you really are not alone.
My AVM excision was last June and although I feel ok. I have been left with lots of questions regarding my thoughts and moods. I can fly off the handle at the slightest thing, get really down about thing, demotivated, sometimes I just don't want to go to work. My relationship has become tense to say the least. I don't really get a fantastic amount of help from the medical fraternity. I don't think they understand, its not just a "here's a pill, see you later" its deeper than that.
I have been going to see a clinical Psychologist to try and get some meaning, but on the whole they have been a bit of an expensive waste of time.
Try to take each day as it comes without too many expectations and try your best to think positively, even on the very smallest things.
I think I told you that I did hear the song, and it is FAB!
I heard it, again, today and it takes my breath away. I will ask my husband if he could ever sing a song, like the one you have, and he would probably run and hide! I have known him for about 16 years, and, so far, I have never heard him sing EVER!! :-)
Lisa