Just when I thought I was good

Ok so it appears that I am too symptomatic and need another ct angiogram.. Does anyone ever get tired of all the doctors, tests, etc. I am not feeling sorry for myself but it appears that sometimes I will never be ok and you know the hardest thing, is the attitude of those that appear to "care" about you. I get tired of the words because actions speak so differently. I again cannot reiterate enough how lucky I am to have all here who ge what we go through.....its not that we are looking for sympathy, or are complaiing but again, just get so tired of the whole AVM thing. Well please send positie energy and prayers out if you pray.... I was told by a dear friend I "gave this to myself".... nice friend..... doesn't understand why I don't share anymore lol. Anyway please continue your own personal fight with this rare disease we have. Love to you all and alays each and every one of you in my daily prayers...I love you guysxoxox Mare

Hi Mare. I would like to give you a virtual hug…sounds like you could use one now. Sometimes during the long journey to become well again…we just plain get worn out. No one enjoys doing all those nasty tests. Don’t forget we have a humor and laughter sub-group on here if you are having a lousy day. Plus you are always in my prayers!

Stay strong & positive and i will pray for you.......i understand how it feels but we are only on this planet once so make the best of what we have and the ones around us that do care....God bless.

Hi Mare, I understand how you feel. One day at a time is the only way I look at life when it comes to my AVM. It is so difficult to speak to people about our condition who do not have an AVM - totally understandable. Hang in there. I am praying for you and everyone on this site. God bless and try to stay positive.

I understand how you feel my friend! But is our Journey...I been get tired of taking my medications and see the doctors that are always saying that is gonna be better...We have to be strong and have faith that someday everything is gonna change....Have patience and stay positive, is easy to say it...But that is the only way that we can get through this Journey...God bless my friend and Take care...

Thanks for all your comments. Trust me I am a hospice nurse and it grounds me daily as it humbles me....with my own health issue which my patients do not know it makes me better....to listen more carefully, more compassionately, and just being there.....unfortunately a "dear" friend hurt me but I woke up today with a new attitude of if this person doesn't care why should i. TO tell someone going through this I gave this to myself.....not nice and well an excuse to step away from the situation. I remain faithful as God is always by my side as well as all on those site...we are so blessed to have had Ben creat this and I as always hold you up in prayer.. xoxoxoMare

Mare...Stay strong...What your friend said was said by an unintelligent indivividual. I had a friend like that before I decided to just stay away from her. We are fighting so hard to deal with that, people like that. we don't need. I'm sending positivey energy your way, as well as praying for you. Keep the Faith!

Hugs and prayers going out to you! It is such a blessing to have this board for us to share and have empathy with/for one another. We do have such a rare disease that no one in my area or most of our areas have ever even heard of it. My husband, who went into the actual doctor's appointment with me, still has to ask me when telling someone about my results, "What is that called again?" It is still frustrating to hear people say that my appointment was "good news" because I am taking the "wait and see" approach and not having brain surgery. Good news would have been that there was no evidence of a brain lesion of any kind. If they lived one moment in our bodies after a bleed, they would not have the same reaction. I would never say that our news is good news maybe just not the worst news. Vent to your new friends on this board anytime, we are right here to support you:)

I hated the Angio the worst! I will pray it goes well with a positive result! Angio's are Not my favorite AVM test! That's too bad about your friend's comment! I can only hope I would have been a better friend than some of the people I call friends! If they could just say "hey, this is all too much for me and I cannot handle it" I would have been so happy for them to disappear instead! It's all the sideways/stupid offhand comments that piss me off! Sorry to Vent, I probably should have been offering support instead ?

Lol no Nicole its refershing to know you hear the same stuff....and so true....sad but true...love ya for your honesty and will keep you in prayer! xoxo Mare

I won't even address the Angio but I do hope for the best. It's sad but true, you find out who your real friends are when something major happens to you. Your friend will hopefully learn and grow but at least you saw what was important and that was to take care of yourself. That's a good thing. It's true that while support may be offered, it takes some personal experience with this monster to fully understand things. Feel free to lean on the members of this site who have some idea of what you're going through and hopefully both awareness as well as a cure will catch up. Take care of yourself, stay strong and keep up the good fight. :)

Dear Mare, you were one of the 1st members who helped me how to use the "chat room" when I found the site & couldn't type very well; actually, couldn't do Anything very well! lol. You are a wonderful friend here and I probably shhouldn't say this BUT, how the hell could any one of us "give" these horrors to ourselves??....I mean, really!!!! I say, "Walk a Mile in My Shoes"! For this person who hurt you, it is her loss my friend...too bad..so sad that she has lost a precious friends. My thoughts, prayers & love will always be with you Mare. xxxx

i It’s ok to feel like you do but do not stop living. Live to the fullest everyday and take a mental pictures of beautiful happymoments for yourself for later on.It comes in handy when you are feelindg down. i speak from my experience. It works for me. i also pray a lot. i find it makes me focus and peaceful. You can have a million people pray for you but it’s not powerful as you pray for yourself. Hang in there! Don’t give up

And don’t pay attention to stupid comment. My friend told me that a lot of people say stupid things because they don’t know how to deal with this type of situation but they feel like they should say something to make themself feel better. So just feel sorry for them. What goes around, comes around.,I bet those people would not be able to cope as well as we did if they were in our Isituations. Good luck Mare!

A lot of times I was told that my stroke happened because I was overweight and/or too stressed (I was getting a PhD AND an MBA at the same time when I had my stroke). It seems that people assume that if you have a stroke before 70 years old that you are not taking care of yourself. Well, I DID take care of myself! (took the time to exercise at least 2 times a week, had avg of 8.5 hrs of sleep every night, ate healthy because I was trying to lose weight, etc). Point is, dont think too much of it and try to explain that you were born with an AVM and that the problems you are experiencing are not your fault, but nature's roulette.

Hi Mare and everybody else.. i can definitely relate.. and to think that my diagnosis is pretty recent as I had just had my surgery..... i am now on the road to recovery (it has just begun)and quite honestly i feel like i am on this rut for a long time already .. bottomline, i feel tired emotionally, not to mention physically (because the body is still recovering from the major surgery i had underwent)... for me, it's a roller coaster ride feeling but i do remind myself each day how lucky i am that my surgery went well.. i tap into my heart and really feel the gratitude.. thankful for the people around me who give me support and all.. most of all, am thankful that i stumbled into this site as the support that i get from here is wonderful and it's such a relief to know that WE are not alone on this journey.... Stay strong Mare. Know that I will be including you also in my prayers and will send positive vibes to you and to all each time I will be logging in or signing in here....Take care!! :)

absolutely...I even dislike going to the vet., the dentist, and the vitamin isle.


I’ve been going through test after test all year as well, the angio was the worse for me, but needed to be done in order to understand where we are with the AVM. Hang in there, you are in my prayers as well. People really do not understand, so sorry about your friend. I lost a (so called) friend of 12 years because I could not fly to her wedding ( my Dr told me it would not be wise till after the angio). She couldn’t understand and does not want to speak to me anymore. I guess what they say is true, you find out who really cares about you in times like this. This is a great site, I’m new and just learning how to use it, but is great support. Good luck and god bless.