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Unregistered User
(1/13/05 3:39 pm)
Update from Arizona
I know I dropped out of sight for a while but you all have been in my thoughts even if I haven't been on-line. I'm still plugging along. The level 5 1/2 headaches are still with me 24/7 and March 05 will be 3 years since this FMD ordeal began. The 3 brain aneurysms are still there - 2 of which continue to grow - the left vertebral artery aneurysm which was wrapped and clipped is growing deeper into the brain. The right coratid which they weren't able to reach is getting larger and they are watching it. The left coratid was stented and is holding it's own for now. The right vertebral artery has just withered away from the FMD. That's my brain. My abdomen is having it's own fun. FMD has been diagnosed in the arteries to my spleen, intestines, both arteries to the liver and narrowing has begun in both renals. In September 04, I had an unusual episode with my heart - not sure if it is related or not but one day at work my heart rate suddenly raced up to 202 and my blood pressure to 185/145. My school nurse called 9-1-1 and the paramedics worked hard to get me stable before they could even begin transport. The doctors don't know why it happened or if it has anything to do with the FMD so they added a beta-blocker to my long list of drugs and we wait to see what will happen next. If that isn't enough, I have started developing holes in the septum of my nose and I DO NOT SNORT COCAINE. I will see a specialist for that later this month. Could that be an FMD-ism or am I thinking that every blooming thing that goes wrong is the FMD.
I still work - I refuse to stay at home and think about the constant headaches and pain. Working with high school students keeps me busy and feeling like I'm helping someone and not focusing on me. This seems to be the only venue where I can let it out. My husband is great but I can't let him always bear my burdens - I have to stay positive for him and our boys.
How do the rest of you do it? I haven't had my ileac arteries checked - I think subconciously because I don't want to find another area with FMD - my brain and abdomen are enough.
Celeste has always been an inspiration to me and I've lost contact with her but want to get back on track with this group.
I guess I hit a point where I was thinking to heck with this FMD but the headaches are slowing getting worse and it's time to fight again but where is the research?
Thanks for reading - God bless you all. My email is:

Unregistered User
(1/15/05 10:09 am)
FMD Global
Hi Joni,

Bertha in Gary. I'm so glad to here from you again. I've been wondering how you were getting along. Glad to know you are still working. So am I. My daughter, like your family, wants me to retire. But what then? Do I just sit around thinking about this stuff, and waiting for the inevitable? No! Like you said, the kids give you something else to focus on. I'm in the curriculum department, so I work directly with the teachers and principals, but the kids are our focus.

My FMD is now also in my right renal. No stenting was possible because of the extent of the disease. I had angioplasty and it seems to be holding. My carotids and vertebrals show little change so maybe that means it has slowed in my body. I'v started to have fainting spells. We don't know whether it's related or not. So you know they are testing me up the wazoooo!

I'm going to be a new grandma any day!! So FMD is going to have to take a back seat to my new Grandson. My son-in -law says I need to retire so I can baby sit. He says they want me around for a long time. I appreciate that, but now I really have an agenda, and retirement just doesn't fit in right now.

Let me hear from you. I know how it is. I'm taking time to do this now, but that doesn't happen very often.

To everyone else, Happy New Year, and may the year ahead be better for us all.


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