A waiting rant

I am feeling so incredibly frustrated today. I try to remain positive but today I am frustrated. I want my life back. I don’t want to wait for doctors and their assistances to figure things out or to return from vacations. I want control over my life. I hate waiting. I would like to sleep without medication to help get me there. I want to have normal conversations; not ones that are guarded or AVM focused. I want to stop questioning every headache. I want to go back to work; but I’m not an asset right now. I wish I had a crystal ball.
Ok I’m done. Thanks for understanding just how bad this sucks.


I understand, the waiting in doctor's offices gets old. When waiting I would send text messages to my friends and family that we (my wife and I) were bored with waiting so we were going to "make out". I'd send messages like "we're back waiting in Dr X''s office, Mer (my wife) is getting "handsy".. gotta run, it's make out time"

It's silly I know.. but what can I say?


Stephanie. I know what you mean....I wish I had my life back too. I am now disabled... something that I never in a million years thought would happen but, it has. I also can't sleep without taking something to 'knock me out' at night (the pain is to much). I have a headache every day along with some other symptoms too. I haven't left my house now in three days because my head hurts (and I have a lot of pressure ) and my body goes into tremors. It really stinks!!! (to say the least)

I was thinking about this yesterday. "Is this how the rest of my life is going to be?" I keep telling myself - "No! I won't put up with this!!" But, in true reality.. This might just be for the rest of my life. Only time will tell. All I know is... I take it one day at a time. And I keep hoping...that some day...my brain will figure out, of how to compensate for the damage that has been done to it. Anything is possible. :)

Keep your head up and stay positive!! I know it’s hard, but one day it will be better, we gotta believe that!! And remember that’s why they call us ‘patients’ because we need lots of patience waiting for these silly doctors. And remember they are just ‘practicing’ on us!! O.o

And the frustration continues… I spoke with the gamma clinic at TWH and they just received my referral TODAY. I received the letter from my original neurosurgeon on February 24th referring me to a different doctor and recommending Gamma. I was told that my file was being presented at the Gamma Conference 3 weeks ago ( they meet every Monday). I need a plan. I hate not having any control. I’m exhausted and anxious. That’s all…

I had to type in “waiting” today to find this discussion. I just received a call from our neurosurgeon saying that they want my daughter to see yet another doc for yet another opinion. Last Thursday we met with a radiosurgery oncologist to discuss LINAC treatment, only to find out he was meeting with the neuro the very next day to discuss her case. He did at least explain the process, but no indication on when they may begin. Why didn’t they do that first and then set up the appointment to go over their findings. She has seen 4 doctors besides the ones doing the MRI’s and angio and no one is telling her much except that this AVM is very large, grade 5, and covers three portions of the left side of her brain. When I told her they were referring her to a new one, she lost it. I am at work and she is home. It’s so hard to have your daughter feeling so torn up. This is getting to all of us, but surely her patience level is getting lower. Nothing is moving fast enough for this usually fun-spirited 19 year old. I know that they want to be sure they are all on the same page with her treatment, and I would rather have them be sure than to be hasty, but it’s not an easy road for sure.

Also, any advice on how to handle well-intentioned friends and family? They all ask how things are and what’s next, etc. every time they see her. She just doesn’t always want to talk about it. My suggestion was to practice saying “thanks for caring” and that she doesn’t want to discuss it at that time. She went to a few graduation parties recently and her dad had been there and told a lot of people. So, when she arrived everyone wanted to talk about it with her. She was so disappointed that it had ruined her opportunities to just go and be a teenager and have a good time at the parties. He probably meant well by letting people know about her situation, but I wish he would have had the good sense to also say she doesn’t want to talk about it, so to please not bring it up those days. Although he and I have been divorced for 10 years or more, we are on very good terms and see each other fairly often even though our kids have grown up and are all out of school. I really wanted to wring his neck though for not thinking about her feelings. Do I say something to him to help prevent this in the future, or stay out of it?

Well, thanks for letting me vent. I usually find myself trying to encourage others, but seems like it’s my day to be down in the dumps a little.

I felt like I was reading my own mind when I read your post. My daughter is also 19, with a large avm and her father and I have also been divorced for many years. I feel your pain! As moms of 19 year olds, its hard to not hover and let them feel like adults when at times they are scared and still want to be our little girls. I have started to tell people how Erin is and then state that we are trying to keep life as normal as possible so please send her your prayers but please speak to her about anything but her recent diagnoses. I have also reassured everyone that I would keep them updated via this site or FB. So thank you for not asking Erin about it. And as far as the ex husband that is still a work in progress, but I would definatly tell him how you feel. I hope this helps Please let me know if you need to talk as our situations sound very similar. Good Luck with your daughter and god Bless you and your family.