Jobs that an AVM survivor does?

I am a practicing Occupational Therapist. My AVM bleed during my first semester in college. I went on to finish college and have noe been practicing for 7 years. Most of my jobs have been full time but I find that I do better with fewer hours. 32 hrs a week seems to be a good fit as opposed to a 40 hr week. I do get tired during work but I find that controlling my blood sugar by eating frequently helps with the fatigue.

interesting, well done there. I wonder, how much stress do u get, post AVM and before your AVM? My aphasia can be a real, real pain. If i didnt have that, my life would be alot, lot easier!

Hi Rich, I was a firefighter/Paramedic at the time of my diagnosis. I never experienced a bleed. I had 3 embos then went 6 more years without symptoms, even though it was only about 85% occluded. In 1992 one of my symptoms returned and triggered another round of images and bad news. The DAVF had re-established itself and there was now an aneurysm, too. By that time I had promoted to Fire Captain, still doing the job I loved. I was afraid that was all over when Dr Hieshima said it was time for a craniotomy. Dr Charles Wilson did my surgery with Dr. Hieshima assisting. That was mid-November. By early January I was back at work doing "light-duty" in the office. By about June I was off all medications and released to full-duty. I continued to work as a Fire Captain, then Battalion Chief until my retirement in 2009.

Late in my career a colleague's son developed a bleed while working at one of our Fire Camps. Justin did not survive. I was able to provide information and support for his family, as well as the family of a girl friend of one of Justin's Fire Camp buddies. She survived her bleed and surgery, but not without residual impairments.

As you noted in your comments, every AVM/AVF is different. For some of us it is only a harrowing inconvenience, for others it is far more serious. Survivors are some of the toughest people I have ever met. The strange thing seems to be how much guilt each of us carries because we all know someone who didn't do as well as we did. I have had to learn to deal with that. I think the best each of us can do is to simply do our best. Help one another, be gracious enough to allow others to help us, and do not waste the time and energy which we have been given, whatever the nature of the "job".

Fire Buddy

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Wow Battalion Chief! Figures, you are awesome Firebuddy. Not to downplay anything but yes, this is a terrible thing and we are all survivors and knowing of a death very near to us just brings that home. Wonderful letter, thank you for that and for being a wonderful member here. :)

I had my craniotomy 4 months ago right in the middle of my last year at the School of Environment and Geomoatics as a Forest Technician. I landed a sweet job last year working for a large company as a supervisor for all the reforestation contracts in my area. I was to return to this position after graduation. What a devastating thing to happen. I am now taking the year off to heal. My boss is fantastic in the sense that they are willing to let me do whatever part of my job I am capable of right now until I can return full time. Im nervous about it cause I know the things that are different for me and it is so frustrating. Im working on my research in order to graduate but it is SO slow going. Its like when I read something "smart" there is a white blank between what I am reading and the time it takes to process what I just read and then to organize it in my brain and spit it back out on paper. This is something I used to be really good at and now I can barely focus.

I know its early and things will take time. If I look back 2 months ago I realize how far Ive come and this encourages me to keep moving on. Some days are just so frustrating and people dont understand what its like. Thank goodness for my husband, love of my life and biggest fan.

One other thing I have done is be in touch with the Brain Injury Association. I have a counsellor I see once a week who helps me with the little things, like focus, attention etc. Its once thing to be cognitively/mentally well OVERALL but once that is done its like "yay your better". Wrong!!! There are so many other little subtle things that need to be worked out. It helps to have someone to relate to about those subte things.

Anyway I can ramble on and on. Bottom line is that I am lucky to be alive and try to enjoy each day for what it is depsite my frustrations. Easier said than done sometimes but i will get back to where I was and i will be avble to do what I used to "just not today".

Best of luck to everyone, thanks for listening.

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Great Discussion Rich, Thank you and to all participants! I learned so much from your comments! My AVM was discovered and obliterated this past September. Before that I sold insurance and was told by my wonderful boss that my job was there for me when I was ready! I want to go back to my "normal" life and work but I am worried because of my short term memory loss and I think I have this mentioned "aphasic" On top of headaches, I get easily fatigued, depressed, confused, frustrated and irritable fast. Plus I am told, of course, not to drive, for now. I too have applied for SSI.
I also felt survivors guilt but have accepted that its in GODS hands and I trust him! Reading your thoughts has led me to think that, Yes there are (too many) tragic stories that we all can and should respect but there are lots of us Survivors AKA Miracle Patients and ITS OK to rejoice and be grateful and glad for each day because LIFE IS BEAUTIFUL! Thank you Heavenly Father!! Amen indeed! :) Meanwhile, I have been keeping busy with many trips to the library, I just read a great book by Chris Licht called "What I Learned When I Almost Died" this memoir is about his (RELATABLE) aneurysm experience and he mentions that Vice president Joe Biden and rockstar Brett Michaels both have had them! And Emmy winner Denise Cramsey who sadly, didnt survive.
Whew, time to settle down and rest these fingers! Take care everybody and GOD Bless!!

Hi Stoked2bealive, wow thats great that your boss will come back and let you start at any point. Your job sounds great, but it will be tough im sure. memory loss, speech understanding can be some of the most difficult to get to grips with. Can u store information on the phone as u used too? Maybe important for u. Myself, Ive used a recording device before, so although i often miss numbers, i can always track back.

Hi - I received this email regarding 2 positions working at home and thought I'd share:

Because business is BOOMING we are looking for two empathetic
individuals who are good on the phone, familiar with the Veterans
Administration and Social Security Disability process.

Candidates would need to be available to work from home two
to three hours a day 4-6 days a week.

These advocate positions would allow you to put your disability
experience to work and earn up to $1,020.00 each month.

You would get paid to contact our members by phone and e-mail to
teach them how to use our resources to weave through the maze
of disability issues.

And yes, you can do this and keep all of your Social Security
Disability. To learn more and apply, go to

http://clicks.aweber.com/y/ct/?l=O.TGN&m=Iz1.Ic7aHeaS8f&b=F47AFIyRsNLofqYTqt7k0Q

Regards,
Brian Therrien

Disability Solution House, Inc.,
2938 Mount Philo Road
Charlotte,VT 05445 USA

Hello. I went back to my job, teaching 5th grade, about 7 weeks after my bleed.

hi mary. Has it made your job difficult in some way? Speech, memory loss?

Unsureabout how some of these links are, but they might be worth checking out:

http://www.theworkbuzz.com/news/disability-employment-resources-101/

Disability-friendly job boards
Many websites are dedicated to helping job seekers find disability-friendly employers. Here are some sites to kick-start your job search:
•The U.S. Business Leadership Network represents more than 5,000 employers and supports the advancement of people with disabilities in employment. This can be used to research companies to determine whether they are committed to hiring and promoting people with disabilities.
•AbilityLinks provides networking opportunities between job seekers and disability-friendly employers, along with mentoring from professionals with disabilities. Most of the jobs posted are executive, professional and managerial positions.
•Disaboom Jobs includes disability-friendly employers and links to available job openings. You can post your résumé, search for jobs and read job-related articles, including those on finding disability-friendly employers.
•Gettinghired.com provides “careers for talented people with disabilities” and includes services such as mentoring, employment forums, job-search tools and assessments. Jobs range from entry-level to executive positions.
•AbilityJobs, a division of Ability magazine, is the largest job board for people with disabilities. You can post your résumé and cover letter, set up job alerts and search a database of more than 10,000 jobs.

Government resources
Disability.gov offers a wealth of disability information of all sorts, including extensive employment tools. This website provides job seekers with links on career planning, job retention, self-employment and employment law. It also includes information for employers.

The Job Accommodation Network, a service of the Office of Disability Employment Policy, offers employment guidance to job seekers, employees and employers. If you have any questions related to disability employment, this is the place to go.

Have you already found a great job? Tell the world what you can do through the “What Can YOU Do?” disability employment campaign.

Sarah Laugtug is a writer, career consultant, and the executive editor at ilivewithadisability.com. You can view more of her work here.

Hi Rich - I was actually searching for the embo. thread, and this one came up, instead…ah, serendipity…it’s my word of the week :wink:

Anyway, I read this discussion on a different site that posed the question:
-should I disclose my disability in the cover letter?

Replies differed, of course; however, it seemed unanimous in saying that that decision is a highly personalized choice and that nothing of the sort should be brought up until hired…I’m no legal pro., however, this made a lot of sense to me.

Hey Rich!! In 2009 I was in school for nursing and working at my hospital ( The hospital my gamma knife was done at.) I Have been told by my top 3 doctors that I need to re-think my field. So I am in the same boat as you!! I meet with my doctor tomorrow and that was one of questions for him!!

Hi! I am a legal secretary at the District Attorney's Office and have been here for 13 years now. My job is time sensitive and stressful. I handle all misdemeanor matters that come through this office as well as juvenile cases. I also handle pre trial cases, such as if a person is on probation through our office, I have to monitor them. There are times that fatigue, vertigo and migraines get in the way but I try to keep going the best I can. My meds are often changed trying to find the right one, so side effects from the med changes are bothersome. I have had seizures while going between medications and those wear me out. The fast pace at work that I must maintain is difficult at times, but overall I'm hanging in there I believe!

Hi Caryn....its nice n awful to know that u r able to swim thru all these tough waves....but thats exactly my question as well...do we avm survivors whose common problem is cognitive handicappness...cannot find an employment or career that does not mainly depend on our cognitive skills ?? .. thanks..Santhosh

This is quite an interesting thread.

hi all, it is interesting to hear, almost all of us despite having a full time job, have more probems than before.....but of course thats an obvious reason! So stress must be a very large factor.

As for myself, I'm still in the same job, but for how long.....what happens when someones is aphasic now, is it possible to have a new skill? hmm that is the big question for me!

Hi there Rich--

That is really good news that you can do this type of work or any work that you enjoy! How much work do you miss with the AVM symptoms?

I had a 25+ year managerial career after graduating with a business degree--I enjoyed school and I loved working with people who had creative minds and a hard-working ethic--I miss it!

I have not been able to work part or full-time for over 3 years now--I have 4 or more days of severe pain and migraines with accompanying symptoms--there is no way to work with this kind of chronic pain consuming my days.

I have also built custom rustic and formal furniture for the last 28 years, and I get to do that maybe once a week or so. I am trying to build a business of it, but again, it is difficult with the ongoing pain. I love building custom furniture and seeing the customer with a big grin on their face and total satisfaction. I could do this until I am not able to do it anymore!

My focus now is pursuing a disability lawyer because I was denied the first time I applied--we knew this would probably happen, so we were prepared for it, but to see it in writing was more frustrating than I thought. They said my pain did not keep me from working, based on their internal physicians, and I could do some type of work--our government offices are so broken, and we have seen so many friends, family members and others that are in so much pain, yet are getting turned down over and over again!! Please pray for this situation and for all of those who are struggling due to lack of income, debt or bankruptcy due to medical costs, and so many other issues that chronic pain sufferers deal with on a daily basis.

Rich, this is a good question and a great discussion to see how people overcome obstacles, and/or see the positives when they are in a difficult trial. I appreciate it and appreciate all of your suggestions and comments. Please take care and have a good day--

I experienced my first AVM stroke at age 9 and my last at age 15. I had to graduate high school, get a college degree and enter a master’s degree program before I found the most helpful tool (voice recognition software) that has allowed me to reclaim much of my hampered memory that my final bleed presented me. Please contact me to attain advice on education issues for individuals with AVM’s; this is especially true for those who are experiencing cognitive difficulties that are thwarting their writing abilities. My e-mail address is ■■■■■■■■■■■■■■■■■■■■■■ and my Facebook profile is at: www.facebook.com/mattramzzz1971

. Sincerely,

. Matt Ramsey, M.Ed.

Hiya,

I worked as a travel consultant for about 2 years after my diagnosis but am now working in the finance team of a travel companies head office. i cant stand for long periods of time and my leg gets very tired and achy so I find it perfect for me! its also low stress which has really helped my body in healing itself over the last few months to give me the chance to give surgery one more go to hopefully get the rest of it in 6 months to a years time.