Monday, April 27, 2009

From Kansas City.... AVM Story.

Hello fellow bloggers!

I find it strange writing and not really knowing if anyone has found us. My hope is that when someone finds out they have an aneurysm or avm, or a family is suddenly thrust into the chaos of a sudden rupture, they can find our blog and receive information and comfort. I think one of the first things you do when you are confronted with this, is to go online and research. It really is amazing what is out there and I know from personal experience that it does help to be able to read and research. I have found great comfort in several of our websites listed here. Sometimes just knowing that someone else is having the same issue or problem is helpful. It's good to hear what someone else might be trying to help.

I asked Terry last night how he felt his recovery was going. It has been 16 months since his rupture. He told me that he thinks it is going to take a lot longer then he thought. I told him that I would just like to see him at least start trying to do at least one thing every day to help his brain heal. I have bought crossword, find-a-word books, saved brain games on the computer, etc. but he has a hard time remembering to do it! He still is very fatigued most of the time. Last night he wanted to have an italian sausage sandwich. He used to make this all the time and I have never made it myself. He was in the kitchen for hours, but he did a great job! It is the first time in 16 months that he has actually started and finished a project! He did lose focus a couple of times, but then he got right back in there. Of course, I don't think he actually ate any of the italian sausage but he made it!

I'm a little nervous about speaking at the stroke recovery compendium this week. They just want me to tell them about our support group and how we started. I am hoping that by doing so that it will get the word out to more people. At our last meeting, a woman came and told us that she has known for a year that she has an aneurysm and is still trying to figure out what to do. She is older and already has some weakness on her right side. She is so fearful of something happening during the surgery. I can't blame her because I remember feeling the same way! It is such a hard decision to make. Of course, if you have a rupture, there is no decision. I remember that I could not have my aneurysm coiled (a much less invasive procedure) because the neck was too big. Now, after 8 years, I can say I am happy that I had it clipped and I don't worry about it at all (well not too much any way!).

Until next time - take care - come back!


from....really go check them out!!!
They also have several other web sites bookmarked. A real plus to those who have had one... and those who take care of us.

I had an interesting day , yesterday.
All day long I felt sleepy... took two naps.
Got ready for bed at 9:00
What happened next... well lets just say I did not like it... it was a flu???

I felt like I was going to die... yes die... (needles to say... I did not)

It was kinda weird... I had good old thumping in my brain case... double vision... partial paralysis... today I wake up... and feel fine. Strange.... very strange.

I know that I should tell my wife. but I don't think I am going to... she is more involved in her neck surgery. (And getting pills... she is an addict.)

So here I sit... wondering who I should tell...
and playing some youtube for you...

Led Zeppelin - Stairway To Heaven

Led Zeppelin-kashmir

Dazed And Confused - Led Zeppelin

if you want to buy some Led Zeppelin...

That is that... see you tomorrow...
Peace out...


Anonymous said...

Go to the Dr. I dont care if you cant find youer card go get the MRI and tell the Dr. Please you have no idea how many people care about you....... Do it NOW!

DelorumRex said...

okay... I have an appointment tomorrow. (For the MRI)