Helping Hands

General
1

Since I joined this site, just about all the friends I have made on this site have helped my healing process, or at the least helped me adapt to my new normalcy. Is there someone, or a number of someones - on here, at home, or in your workplace - who has helped you in your journey?

If your journey has only just begun, is there someone riding the storm with you now, who you would like to thank?

I know, from talking to some of you, how tough things were before you found this site, and before this site even existed, and how things may still be difficult today.

Would you share your 'love' stories with others in here, so we can learn from, appreciate and keep supporting each other, and our families?

2

Tony,…

First, I would want to mention my Lady Nellie, who was taken from me on August 8th 2009. (auto accident) She was always by my side no matter what, or where, or when.

Second, my two beautiful children. My daughter and son actually saved my life. And to this day, they support me with their attention, devotion, love, and care.

Third, I would have to say, my managers, supervisors, and co-workers at work, for their complete understanding and continued support through my work/job recovery.

Fourth, I would emphatically state that the wonderful, couragous, beautiful souls here on this site. Wtih their compassion, understanding, sympathy and empathy have made the healing/recovery process much more easier and bearable.

Tony,…I know that there are others, but those mentioned above are the ones that have had the greatest impact on me, and my (in progress) healing/recovery.

3

Tony: This is a beautiful idea to say thank you to those we love. These are who truly stand out on a very difficult journey we are all on… First of all as I told you I would come to this site but the reality of “being sick” didn’t set in…total denial so it took me awhile months before joining; first my biggest thanks is to God for many reasons…as I have said to you my friend, challeges are blessings and while this journey has its challenges in the end I knew God has always and will always be by my side. My faith has deepened so so much and it is a gift He gave as so many wonderful, new people are placed on my journey. My life is so so much more enriched, meaningful, I see life with my senses all becoming keener and humble, my friend, humility will always be at my side in life…everything is a gift…this Jersey girl will never take anything for granted in her life, nothing…Second as you know about my family, my children are who give me the strength to perserve and never ever take a negative for an answer in life…they need me and they are my strength. I would like to thank my drs. While drs. never totally agreement on tx, medicine is a practice yet they are all helping me heal to wholeness, whatever that means, and I am grateful for their dedication to helping the sick. Again my gratitude to them is to rasie money for research and this is what I promise and will do. Next are my friends on this site…you tony who are like my Aussie brother (love your Aussie accent on the tele) and all your weird words lol!, Lee Anne who I love like a sister, Caroline, Jaclyn, Beth, Connie, Hanne, gordy, Dave, jeff, William, Dipen…I could go on and on and on, esp ben for creating it… I love all on this site and I mean that and I pray for the everyday; and even though when I read their stories…they make me strong at 3 AM when I was upset last year and felt why is no one getting how I feel…I mean the best thing in the world was for me to join this site…so many scared nights I would go on line and felt comfort because although we are all on different journeys with our AVMS, we all get it…the headaches, frustrations, being afraid, not knowing… but the support I have gotten will always remain here wherein I will always be here for all. truth is we are all SURVIVORS! Tony you will always be my special friend because you kept me going on many an upset night and you truly cared…as you know being a nurse I was so afraid I wouldn’t work again but realized I was nursing on this site, a different kind but isn’t nursing just about love and compassionate and being there…you are awesome my friend for making me realize that! I will give you the biggest hug when my feet hit Aussie soil someday hopefully your wedding! I also thank my friends, especially one who is my most dearest and beloved. In his line of work he deals with much people “stuff” good and not so good but has always made the time for me…always listened…always cared… he has been with me on this journey from the day I was diagnosed from getting a email from out of the country to setting up a date for my first embo. I am sure as we speak freely here we find out who are true friends are…and I have tears in my eyes as I type because God has blessed me with a wonderful human being that I call my best friend who I love more than he will ever know. I don’t think I could not have continued on this journey without him. He has inspired me through every setback, headache, isnurance problem, surgery, when I said no I am afraid he said go for it!.. I mean it became his journey, actualy all my challenges in my life were on his journey as my friend too…that is a friend and again it goes back to thanking God for placing my friend in my life… my only hope is that someday I can be there or do something for him… When you heart is held by someone who is always sthere, your load is lighter and a smile can be placed on your face when sometimes it is so difficult… priceless…he is my heart’s safety net…I love you my friend so so much!

I am hoping for my last embo the first week of August and I know he will be here too, cannot imagine him not, needs to come full circle yet I will live in the present as we all know stuff happens and changes but again, God is good and I have many good things in my life, and with a best friend at your side, all things are possible with them and God… God bless!

Love you all! God bless,xoxoxox
Just Mare, the Bluehead from Jersey!
RHKA(if you don’t know what that means, ask William…he’ll tell you!)

4

Well the very first person to pop into my head is my sister Theresa. She was there every step of the way. She was my medical mumbo jumbo interpretor, my psychiatrist, but best and most of all she is my friend and am lucky to have her. Also my children who showed me everyday that there are so many things I have to fight for. Also I can’t forget the people I work with and the company who employs me. They were all very supportive and made me feel appreciated. They also made sure I had my health insurance by paying 100% of it for 6 months. Last an most definitely not last my surgeons, doctors and everyone else who took care of me while in and out of the hospital. With out their skill and compassion I wouldn’t be as well off as I am. One more… I would like my Grandpa who came to me in one of my dreams 8 years ago and told me ‘Everything will be okay deary’. Everything is okay and when things don’t seem so I remember my dream and think you know what it is okay, everything really is okay. I know there is someone who I forgot, but there really are so many I couldn’t possibly think of all of their names.

5

I would have to say that there are several people who really have influenced my recovery. My dad and his wife who left their home in Idaho for several months to stay with me and get me to appointments and get my family through everyday life. My sister who also lives in Idaho who has sent me a card or postcard everyday since I was in rehab starting in August 2009 to current. My mom who has taken me to appointments since January and encourages me everyday. Thank you to all my family who call to check up on my status on a regular basis. I also have to thank my loving husband for taking on the chores I would have normally done when I first came back home. This whole experience was a unexpected shock to us all.

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I am not sure how I could’ve overlooked this, but all of you have helped me so much! My journey would’ve been very lonely if I didn’t have this site and the wonderful people who make it what it is. Thank you fellow AVMers you lit the lights along my path and held my hand. I was never alone.

7

My parents and my sister-in-law DeAnn have really stepped up to the plate to help us through all of this with Ryan. DeAnn spent a week and a half with us when Ryan had a brain biopsy when they thought his hemorrhage was a tumor, and she stayed up with my husband and me night after night, practically ALL night, trying to find treatment options for Ryan. She’s treating Ryan like her own son, and I’m so grateful for her intense caring and dedication to helping him heal!!

My mom has been a wonderful surprise to me, frankly, offering to drive 4 1/2 hours to our house if we ever need her to take care of our other two kids or the animals as we focus on Ryan. She’s 67 years old, and she never hesitates to offer to help! I’m proud of her.

Equally important are all of you and this site. I’ve had so many questions answered, and through that, so many fears calmed by all of you. I SO APPRECIATE you!! A few of you have gone out of your way to talk to me via phone, even, about different courses of treatment. Thank you. All of you.

I come on this site to learn all I can from the people who know just as much, if not more, than the doctors who treat AVMs, and I will continue to try to give support wherever I can to you guys.

Okay. Now I’m all teary-eyed. I can’t let my kids see my crying at the computer, so I’m gonna get a cup of coffee now. Have a wonderful and blessed day, everyone. You all deserve it!!

8

Its great to read your snippets, and now its time for me to add my little bit, in response. Each of your comments has touched me, and brought me to tears, in a positive way. Each of you has shown that not only have you survived, but you have gained strength, spirit and compassion. You probably realise now just how much those around you, mean to you - and how much you mean to them. Thank you so much for opening up. may your journeys continue to improve.

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I LOVE YOU MY FRIEND!!! SO SO BLESSED YOU ARE ON THS JOURNEY AND IT WILL COME FULL CIRCLE WHEN I MEET YOU AND JENNY! XOXO Mare

Tony Lopez said:

Its great to read your snippets, and now its time for me to add my little bit, in response. Each of your comments has touched me, and brought me to tears, in a positive way. Each of you has shown that not only have you survived, but you have gained strength, spirit and compassion. You probably realise now just how much those around you, mean to you - and how much you mean to them. Thank you so much for opening up. may your journeys continue to improve.

10

Tony there are so many people in my life that have been by my side thourgh this journey of mine. The first that comes to mind is my dad who spent hours upon hours rubbing my head (he had the touch) when I was diagnosed at eleven. He has always been there for me. My mom who made sure I got to the appointments and never treated me different she let me live a childs life though the doctors had so many retrictions on me. My grandmother who was like a second mom to me she was so very special. My grandfather who died when I was only three but I remember sitting on his lap. He came to me one night sitting on the side of my bed and reassuring me everything was ok and he would always be there for me. This was a couple months before I was diagnosed at eleven. I will never forget that night and I still believe today it was not a dream GOD sent him to me for a reason. My husband where do I start? He has been there for me through alot even before we were married. He took over for my dad and is by my side with all the pain rubbing my head, rubbing my neck during the migraines and has continued with so much love, encouragement, strength I could go on he is just my best friend ever and I love him dearly. My children when they were finally told what was wrong with me have been there for me making sure I am ok and always here if my husband can not be. As children all they knew was mommy had bad headaches. All my friends here on this site! Thank you all for being there you are so so special. Mare you are like a sister for me and I love you. Oh my gosh I could go on and on. As I now sit here in tears feeling so loved just thinking of how lucky I am. The most thankful I am to is to GOD. He is my strength. Even as a child I looked to him to give me the strength and to help me understand and he always comes through. He has sent so many good things my way! This is hard to believe and I still today don’t believe this was a dream but when I was young before diagnosed I remember standing in a place with other people I did not know who they were but I want to stay there and we were all going somewhere. I felt safe there and said “I would like to stay here” and a voice said to me “You Have More To Do” and I just felt the love. The next thing I was with my family and was so happy. So here I am on the journey of life and hoping whatever I was meant to do is getting done.

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Tony I LOVE the idea of this post :slight_smile: What a great thing for us all to do.

Without getting wordy (it’s totally my trademark though) I would say that one person I don’t thank often enough is Stephanie who was the very first “real” person I talked with who also had a facial AVM. She has become such a wonderful friend and cheerleader for me. Lucky for me she lives in Denver and I can see her many of the times that I travel there for treatment. Stephanie is 100% now part of my family and I love her for everything she has done for me. She is absolutely my inspiration and my hope as she is proof of being AVM free thanks to Dr. Yakes!
There are so many other people who have supported, encouraged, and loved me! I thank all of them and hope that I really DO thank them enough that they know. I’ve said many times that I am a very lucky girl with a wonderful family and awesome friends! I only wish everyone was as lucky as I am.

Shalon

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Hi Tony,

My husband has been a big help, he is not use to having to do so much, but he has adapted.

My two daughters also help, especially my oldest daughter. I have a couple of friends that help me too.

My husband could be anywhere at anytime, but it was weird the day that I had the first stroke, he had drove my then 17 year old to school, and when I called him and said I needed him to call emergency, he said I’m right outside. My Mom is paralyzed and lives with me, when I went in the hospital, my oldest daughter, who was then 22, quit her job immediately and started taking care of my Mom.

I really do appreciate my family and what they have done and continue to do, but if it wasn’t for this sight, I would not be talking about what goes on with having an avm. I’m not sure if family does not want to hear it or if they really can’t understand it because they have not experienced it themselves.
I rather talk to people who have some idea what I’m talking about anyway:)

Peace,
Ameenah

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Every day I appreciate the wonderful people that I’ve met through this site. They not only have helped me understand my AVM, they have helped me feel better about myself in general.

Debbie

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William, Jamie, Jennifer, Kelly, Mare, Lee Ann, Shalon, Ameenah & Debbie C - thank you for showing the true spirit of the beautiful people on this site, and the kindness of those around you. I can honestly say that it is people such as yourselves that have helped (and are still helping) me on my journey. Many others have told me their stories, but won’t or can’t put their feelings in writing, as their shyness takes over, so I really am pleased you opened up on here. My thoughts and thanks go out to you.

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What wonderful and touching posts that I had read on here, and since I’m here (and since Tony suggested smiles) I’ll add mine.

I am grateful to God for giving me the strength to go on while I was going through this journey. He has definitely given me strength, especially when I was feeling deeply down and out, and scared.

I feel especially grateful for the sister missionaries (Sister Snow and Sister Hatch) in my church for taking care of me since the journey with my AVM had begun. They would give me rides to see my doctor, and would go grocery shopping for me since I couldn’t see well.
They would give me a ride to the emergency room (where I would get the CT scan and find out that the migraines were actually an AVM). The sisters stayed with me all afternoon until I was transferred to the University of Maryland Hospital where I would get the surgery that I needed. They would send me cards with words of love and encouragement, and they would call every week to see how I was doing. That’s always a great memory for me to hold on to.

I’m very grateful for all of you on this website. The love and support that you give is positively overwhelming. I love you guys and pray for you all. I only wished that I had found this website sooner, just after my surgery, but I found you now. Being here and talking to you has uplifted me. I believe that it does give a person strength to know that they do not walk alone through this.

Tony, I see that you’re still going through the journey of recovery. How are you doing now? I hope that you’re doing well.

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Leslye, isn’t it wonderful to know others out there DO come to our assistance, when we need it. Too often on here, we read of ‘this’ bad circumstance, or ‘that’ awful experience. There are so many wonderful people out in the real world, ready to give, and I thank you for doing just that. My positive thoughts go out to you.

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I want to say a big thanx to my son Zach who has AVM. He has tought me so much im very proud of him he is my rock. There is days that I cry when I look at him cause I see my baby in sooooo much pain I just want to take it all away and he is like ma i’ll be ok. Second of all this site i’ve learned soooooo much ty ty ty!!! I can’t say it enough God bless

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Hi Sarah. Thank you for your entry. Sometimes we forget how much pain our loved ones go through but you reminded me that without your love and support, and your sons strength, things would be harder all-round. Thanks again, for being an awesome mum - there’s a lot of you on this site!

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On this, her birthday, I'd like to thank my special helping hands, my new wife Jenny(formerly Jenny Scott). We sometimes don't realise, while suffering through our own plight, the traumas our loved ones go through.
Jenny is now in a less healthy place than I am, and I shall always be here for her, because she needs my helping hands and support.

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Tony, I would like to thank my daughter, Adria who has always been there for me! By the way, she just had twin boys....Alex and Liam! Now she has 3 children...WOW Because of her support, I'm able to help her now.