It has been 12 weeks since my fall. I am tired. I am tired of making others feel better about my situation. I am tired of people confusing my ability to explain my procdure in a clinical fashion with the fact I minimize it. I am tired of people asking what they can do for me only to have them do what they want to do for me not what I need. I am tired of people telling me the facts they learned on TV because of Brett Michaels. I am tired of informing others that they too could have one and not know it. I am tired of telling people I am being pro active and Bret was reactive. I am tired of the questions. If people want to know more then do as I did and go online and maybe they will find this site and be able to understand what the patient as well as the families are going through. I am tired.
The irony to this is that I draw strength from it. Inner strength that I now turn to my own healing from the inside out. I have printed off information about AVM's and how people with questions can support AVM awareness. I have ordered a medical alert bracelt that is fabulous. I had it designed just for me. I have made a list of things I can and will control and another of things I wish help with much like a "Bridal Regitry". The maid is coming to clean the day before my surgery. The lawn man has been informed not to show up before 10 a.m. My neighbors have been told not to knock on the door because I will not be able to get up due to the Angio gram, a note has been made and ready to post for those who think I am kidding. The phone will be turned off. FB will have an update as soon as I feel I can. This is about ME now. ME!
Am I scared? Yes of course but not about that day but the day after. My team of surgeons as well as my very own personal nurse have made it clear to me that they are not only compintent but compassionate and I am there only concern for that day. My nurse has called at least once a week to check on me. She asks if there is anything she can do to make the wait more comfortable. She knows what is going on in my head, and we ain't talking about the AVM, so she brings it up before I do. I love Jan. I feel safe and secure about that day. My concerns are for the day after when all the emotions I have been able to and have had to surpress for the sake of others. I feel an "emotional flu" coming on. I will let all those feelings fly and God help those around me when it hits. That concerns me. Am I going to do damage to personal relationships? Probly. Absolutely. Can they be repaired? I have no idea. That's what scares me. Will I feel abandoned by those I preceive to have a more intimate roll in my life? Yep. Can I get over it? We will see. Will I be humbled by somone who comes from the shadows to be there for me? It has already happened. I cried. You can see now that I am more uncertain about the day after than I am about that day.
God has brought me to this point and he will carry me through the days to follow. I will have to do as I have always done and put my faith in Him
It sounds like you are in good hands with all your doctors and nurses. The others in your life will hopefully understand some day. The Bret Michaels thing is a double edge sword. Yes there are more people interested in aliments of the brain, but no one is explaining anything so we are left to do it. Not the easiest thing when the thought of how our lives will turn out are running from one end of that room in our head room to the next. I pray that you have one person in your life who is there just for you and everything you need. The questions will never stop and even after to explain everything to the point of understanding more will come. I wish you luck and pray you get rest.
You will be fine. it is a time that is very important to turn your thoughts and strength inward and help yourself and forget everyone else. I had a wonderful “blocker”,even though he is so sick himself plus a dog that all along had been telling me things, I just wasn’t listening. I started to listen and he was always at my side, especially at the bad times. The conversations would just change a little - like “Kodiak would you stop licking my eye, I know I am going to have one (all the while hugging him thank you). Just make sure you have a “blocker” for a couple of days and after that all you have to tell people is that you love them but you don’t feel like talking about it as you aren’t feeling well and will when you feel a little better- works well. My husband more than made up for when it is the other way around at our house (he is 3rd stage progressive MS - anyone know what that is?). In fact I had told them all to stay away, 1 1/2 hour drive. Amazingly they all listened except fot my baby sister who works at that hospital but took the day off to be there. So they were there with me thru the partial “Iron Man” set up screwed into my brain at 7 in the morning, thru yet another angiogram and MRI, were with me when people came in wanting to take pictures and I almost killed them on the spot with the"evil eye” amd later when the nurse came in and said to me why aren’t you asleep, I’ve shot you up with so much morphine anyone else would be asleep for days. I promptly told her that I had told them I had a high tolerance for pain killers , it is doubtfull if she would be asleep after having this thing screwed into her head for 10 hours and then promptly barfed on her. Got more morphine then. My only 2 cranky episodes.
Sometimes someome comes along that you really least expect of eveyone you know - right out of the blue and possibly didn’t really care for previously and will grab your hand from the depths that you have allowed yourself to fall into and pull you out and hold on for awhile making sure you are on safe ground.There is a “reason” for it despite the fact that you may never know why: then they disappear again.
End of the story for tonight as I should have been in bed awhile ago. It probably loses its train of thought sometimes (and spelling) but I should have been in bed a couple of hours ago. My thoughts are with you.
Hi, Our prayers will be with you. Yes, only God knows what’s best for us. He put you to this circumstances for a reason. Our prayers that you will have more faith and strength to carry on. You will be fine in the hands of GOD