You just can't ever give up but I did

Discussions of issues related to living with cavernous angiomas

You just can't ever give up but I did

Postby Libby » Fri Oct 01, 2010 6:54 pm

Hello, I am Libby. Any one from the old forum knows me and new people will. LOL I actually try to shy away from talking about my personal problems, but there is a purpose. (This will probably be long, I apologize.)
It wasn't my first bleed, but my bleed in the thalamus and hypothalmus and that general area in 99 really did some serious cognitive damage. My attention span was that of a young puppy. My short term memory was non existent. I could not modulate my emotions and seemed to get stuck in the highly anxious mode quite often. I had no spontaneous memory and couldn't think about things because I couldn't remember what I was thinking about. I couldn't rub 2 thoughts together. I literally sat on the sofa and drooled for the first three months. (This isn't the time to go into the physical stuff).
So my teaching days were over. I wouldn't drive when I was anxious which was most of the time and I live in the woods. Life as I knew it was over. Now with the help of medication, good planning and accommodations, and the passing of time, I have gotten a lot better. However, I did have bleeds the next 6 years in various places that kind of slowed the progress down with some regularity.
I haven't had a bleed for 4 years, so I figure mentally I am at my peak.
I do have the other condition that can keep me housebound for at least a week at a time easy. It is also the reason I have days when I can't see well enough to read and the reason I have nasty headaches. But I came with the other condition (and probably the ccms if the radiation didn't cause them) It seemed like I always worked with headaches (unless I had to stay home) and I always said that I had to stay busy because then I could kind of put the headaches out of my mind.
I am a very social being. I have been in this house for 11 years. (Not all the time, but most of it) I tried to volunteer twice before, but the timing just wasn't right. Because I am so high functioning, people didn't realize that I need someone to show me everything. I need a position where I work with someone else because some days I can't see to drive.
I, the disgustingly optimistic one, had given up. This last year has just been terrible. I just needed to feel useful. Boredom breeds bad habits.
Today I completed my 5th day of volunteering at the hospital. (My limit is 2 hours so far, but that will increase, and I have to drive 30 minutes to get there and I have to be able to get home. ;) They have a volunteer coordinator. She wanted me even though I told her all my flaws straight up. She showed me everything and checked up on me until she knew I was fine. I am loving this. I actually have people to talk to and amuse. I am helping manage the front greeting desk. Perfect for me.
So life can get better even 11 years after the initial bleed.
Life is really really sweet!
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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Re: You just can't ever give up but I did

Postby PattiG » Fri Oct 01, 2010 7:51 pm

Hi Libby,

CONGRATULATIONS on volunteering @ the hospital - that's fantastic!!! :D Yay Libby!
I too enjoy the volunteering experience @ our local library and am fortunate to live close enough to ride my bicycle or walk, and while I'm only up to 30 - 45 min. once a week, it's a start and I consider it my 'social hour!' lol ;)
I can certainly relate w/some of what you've gone through and totally empathize w/your experience.
Since my recent surgery I've had to adjust to the :? 'new' me - argh! Left-sided numbness and very strange and unpleasant sensations. Considering all I've been through I have to be thankful I'm doing as well as I am. I've been able to resume indoor walks of 1 - 3 miles daily (w/Leslie Sansone DVD's) http://www.youtube.com/watch?v=ndVjwkaLGDk.
And yes, "life is really really sweet!" :)

Take care,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: You just can't ever give up but I did

Postby Elizabeth » Sat Oct 02, 2010 11:06 am

Congratulations! You have been and continue to be such an inspiration. I am only beginning this "new" life....quite an adjustment for me....and it's great to hear about an experienced cm'ers journey. I'm glad you have found something that suits you so well! Take care.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: You just can't ever give up but I did

Postby Libby » Sat Oct 02, 2010 11:32 am

Thank you, Patti and Elizabeth.
Patti, I can't imagine what you have gone through.
Elizabeth, trust me. I am not always an inspiration. :roll:
You notice I waited until I did it 5 times before I wrote about it. I just couldn't believe it was happening.
It is just amazing to do something I thoroughly enjoy and to have something to look forward to. I keep pinching myself.
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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Re: You just can't ever give up but I did

Postby ketogan » Sat Oct 02, 2010 5:14 pm

Good on you Libby and glad you find volunteering meaningful it gives a purpose in life when one doesn´t stay cooped up in the house have first hand experience in it so you go girl and stop pinching yourself it hurts :lol:
I´m starting both rehab and will try the Gym for the first time in 6 yrs but I have to as i´m going to try to join the Showrings again and that means gaiting with a capital G :mrgreen: :twisted:

Huggies M
Cavernous Angiomas in Brain,Brainstem and Spinalcord, carrier of the CCM 3 gene .
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Re: You just can't ever give up but I did

Postby heidihi » Mon Oct 04, 2010 4:08 am

Libby

You didn't mention surgery, have you had to go through that? I am so struggeling. Just when I think things are better, i've bee walking for 2 weeks up to 3miles per day and them bam, weakness hits again.. This time I feel like my balance is off too, if you've had surgery please share with me all your ups and downs. By the way I had a bleed x2 in my ventricle above thalmus that had caused signigicant swelling and mass effect. It was deep brain surgery and I being pushed return to work and I thought I was ready but now have weakness again in both legs with some balance issues just like with the bleed that was removed. I am post op now 4 1/2 months. My neurosurgeon at UCSF wants to do another MRI. Just don't know how long it will be for that, I live 3 hrs away from SF, so there ya go.... You've had you share of struggles and if you have had surgery please tell me post op how it went.
Thanx
Heidi
Dx w/CM 5/10, had ataxia, odd sensations, weakness in legs, finally could not walk and had a simple/partial seizure-surgery next day @ UCSF when I could not walk any longer. It's been almost 1yr & I am thankful to be alive, still struggeling w/transient weakness in both legs, now headaches & other things (poss. simple seizures) but I know I am here for a reason... Glad I found the AA~!
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Re: You just can't ever give up but I did

Postby Kelstro » Mon Oct 04, 2010 1:46 pm

Libby,
You help so many of us out with dealing with our situations. I have been very fortunate, since my bleed in March I have recovered very well. I still suffer headaches and fatique but when I read about what you and so many other's have gone through and still go through, I cannot imagine.
All the best
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Re: You just can't ever give up but I did

Postby Libby » Mon Oct 04, 2010 9:07 pm

Heidi,
I don't talk about surgery generally because it was back in the dark ages. I was operated on in 87 and they knew nothing of ccms then. My doctor of the time thought I had sinus infections and kept giving me heavy duty anti inflammatories. I kept bleeding into my brain from the cerebellum and wouldn't stop (we now know it was the med.) He then told my husband I had taken too many drugs and would die. (I had only taken what he said) and I had a 2 and 4 year old at the time. Fortunately the head of neurology( who became my doctor) realized I was bleeding in the brain and arranged for me to be moved and operated on. I had 8 hour ememrgency brain surgery. Unfortunately they didn't know about DVAs and cut mine. Made life hard for awile. I developed a clot in my leg for which they gave me aspirin. It was a long winter. I refer to it as the Winter of my Discontent. BUT I survived it! ;)
Operations today are totally different. There are multiple doctors around the country that know what they are doing. We know what to avoid now. This would not happen to you.
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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Re: You just can't ever give up but I did

Postby Libby » Mon Oct 04, 2010 9:13 pm

Kelstro,
Thank you for the kind words. Kind of didn't have much of a choice. You either learn to cope and do the best you can, or you kind of let the darn beasts beat you. So, ok, I have had and do have some trouble, but I can still play with the cards I am dealt!
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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Re: You just can't ever give up but I did

Postby heidihi » Mon Oct 11, 2010 3:01 am

A lot of you all have had many bleeds! And here I am , had only 2 bleeds, and surgery to remove the problem back in May 2010! I am so fortunate, AND I am also such a cry baby sometimes, sorry you all you've been through so much most of you actually all of you! So with that being said, you are very positive people with such a good outlook, I am so glad I found this website... It's so encouraging to hear such encouraging words from people that have been through far more than me.. Thank you all for your support! :!: ;)
Dx w/CM 5/10, had ataxia, odd sensations, weakness in legs, finally could not walk and had a simple/partial seizure-surgery next day @ UCSF when I could not walk any longer. It's been almost 1yr & I am thankful to be alive, still struggeling w/transient weakness in both legs, now headaches & other things (poss. simple seizures) but I know I am here for a reason... Glad I found the AA~!
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