How do we go about returning to what used to be normal when we haven't returned to work yet or able to drive. It's been 15 months for me with the exception of two seizures which have elayed my driver refresher again for probably another six months if I remain seizure free. Physically I feel well and am active (walking and able to meet my own needs - except financially :(. I'm so worrired about money.
Thanks Jim! What have you personally found to be much better?
I always was mild. Enjoyed flowers even wild ones in the fields that most would consider weeds, love the out of doors and biking and hiking, love my family & friends. I just can’t get to them right now since I can’t drive. My beautiful daughters live 1 hr. away in Buffalo and I would do just about anything to be able to hop in my car and drive to take them to lunch or shospping at the mall and just hangin’ out! My yougest is 23 and has her BSN, and my oldest will be 26 in two weeks and she’s a licensed Speech Pathologist with her Master’s degree. both are gainfully employed at Erie County Medical Center in Buffalo, NY. i hated having put them through this horrible ordeal and almost losing me. Now they’re worried about my not working, no income, and take it upon themselves to deal with the disability attorney which i can handle on my own. Originally I spent 8 wks in ICU, suffered a stroke from a blood clot that traveled from my leg, was on a vent, yada yada … Things are better than last year for sure. This time last year I was still having to wear a helmet just to get off the ouch to use the bathroom. So terrible… The hhelmets are now somewhere in a nameless landfill in the Rochester area! I just could not stand looking at them. Now if I could just return in some capacity to my beloved job of 30 yrs. I did find that if I get disability I can gross up to $900.00 per month and not have it effect the disabiity so I hope to play with the nmbers on paper and figure out how many hrs. a week I could work at my current hourly rate and not eceed $900.00.
Where do I find 'A Stroke of Luck? I am in an 'assisted living living (Alden Pointe) in Hattiesburg, MS. We don't go anywhere but the dollar store, I could ask my mother (actually -probably a brother out in Dallas) Mother won't order ANY thing from ANY where & I doubt the dime store or even Wal-Mart have it here in Hattiesburg, MISS
The book is called "My Stroke of Insight". I ordered from Amazon.com, but you can probably find at Barnes & Noble. You may even try a library! You could call ahead to see if they have it! - i just thought of that.
Let me know how you make out !!
IF I ever GET to a bookstore…I don’t drive/They don’t take us anywhere but dime stores. I’ll E my brothers in Texas.
What is normal? Its going to take a while to get back to the way life use to be, but think of it as a new "normal". You'll get back to you, you'll recognize and even new things will start to come to you. I would also say "normal" is no longer you. Amazing! You survived, you are no longer normal. You're blessed!
Tank you Johannah. I just miss my old life and what I had, like alarm going off, hopping in the shower to go to the job I love. Can’t work because of appealing this whole SSDI denial. Gotta be careful about how much you show you can work. The SSDI if it finally goes through will be retroactive to date of injury from date of denial which was May 2010 so we’re talking 17 months. And I want to drive the car that’s in my garage and 2 yrs. “new” that I’m still paying on. 3 seizures keep setting the hands of the clock back for driver refresher 6 mos. each time. So now best case scenario if they manage to keep these seizures under control will be July 2011 - darn! But yest, blessed indeed - survived over a year ago, live independently, arms & legs work, hair all grown back, speech normal. Handle my own bills and finances with what little money I have left. God is good. How are you and what is your story?
PLEASE where can I find that book "Stroke of Luck" in a small Mississippi town....ANY suggestions???
The book is called "My Stroke of Insight". Barnes & Noble bookstore. I would even try a public library for their suggestions. Give the library a call. i ordered from Amazon.com very inexpensively.
I am doing great. I was 12 when I had an aneurysm in my brain, worse headacke in my life . I lost a lot of memory and piece by piece its all coming back, I’m 29 now. I’m married. I have a 2 year old little girl (doctors told me I couldn’t have a baby) but I did! I understand the SSDI, believe me my parents and I went through it. Its normal for the government to deny the 1st time but in the end you are going to be very happy with the results.
No kidding - the headache was unbelievable and out of the clear blue. I'm 56 and have two grown successful beautiful, supportive daughters. They are my reason for conitnuing this fight to get beyond all of this. I want to play with my grandchildren someday and be as cool of a grandma as I have been as a Mom. Enjoy your little one. You'll find they grow much too quickly. Thanks for your support and communication. Man, freezing here in New York State!! Brrrrr........ Snowy, icy roads make me thankful in a way that I cannot drive right now. Hidden blessings keep surfacing!! Let's stay in touch okay?
Definetly. I know that New York weather!! Stay warm
Can you take a taxi if you had specific places that you wanted to go to?
I did take taxi's to some outpatient care before I could drive on days when family /friends could not take me. Even way back then, I did not want to impose on others time w/roundtrip and waiting for me to get thru the treatment... My outpatient care included both brain work and continued PT on my right shoulder so there was a lot of appointments. The taxi drivers were excellent in helping my safety up/down steps/stairs because of my balance loss.
When those seizures occur, are you given the EEG? Do you take meds for seizures?
I was blessed in not having seizures; however, I could not drive for other reasons. I wish I had sold my car instantly, saved those funds and not paid for maintenance, gas, and insurance... Then, bought a new car when I was comfortable driving. When I was relicensed, I was not comfortable driving because of my vision. It became humorous when I would tell a friend to be my right eye; when none of us understood the cause / corrections possible.
Have you cancelled your insurance until you can drive, or do others drive it?
If not being used at all, please check w/your dealer on any impact on your vehicle not being used, i.e. no service, no new fluids, etc...it may not matter at all. Check your records if you received any manufacturer notice of any issues to be addressed; and/or ask your dealer. A couple of times I got notice that something would be fixed...because they were not safety related, they did not have any major recall like Toyota and others have had; would just get a notice mailed to me.
Wishing you the best recovery, and success in securing your license...which will mean your seizures are under control.
Like everyone else, we all have to adjust to a new normal and a new type of life. I miss working in my garden very much, but I just get too tired, even four years after my rupture. I just have to accept it. Doesn’t mean I have to like it though, does it! LOL It’s very frustrating, but I have to keep telling myself I’m alive. I took me a while to get through the financial crap and now I have more looming with another coiling procedure coming up. I know it’s frustrating and you’re doing great considering everything you’ve gone through.
And I know all about those lovely western/central NY winters! I grew up south of Buffalo in snow belt country. I don’t miss Lake Effect Snow storms since I moved to Maine!
Enjoy each day as best you can. One day at a time is about all we can do.
This is a very small town & a Taxi service is not here/my old town/Gulfport, MS THE closest Taxi service is on the Gulf coast ...Had to leave Gulfport BECAUSE of 'annie'....'Assisted Living' with SENIORS means MAYBE a dollar store twice a month for diapers....
DON'T worry about money. PRAY. I learned to walk @ over 50. Am a 58 yr 0ld widow...in an 'assisted living' in south Mississippi. This place is for SENIORS. THE past time is bInGo...My CONSERVATOR (80 yr old mother) I SELDOM see...she lives THIRTY minutes away & her 3 grandchildren are in college over here. They go home every weekend. I am only 'invited' for holiday meals. I am now seizure free unless I have a stressful day @ mothers or she comes over for a fifteen minute visit. My only child, Ben, moved to Texas as soon as he graduated....he didn't have a house by then. I SELDOM see him & he dosen't have a computer (he sold it in order to finish college).
I have decided to simply 'wait it out'....and PRAY.
Tanks Heidi! Why another coiling? Did you develop another aneurysm? If so, do they know why?
Pat, yes I cancelled my insursurance months ago. I have "auto-start" in my crar so I keep the oil circulating by starting my car everyday. A friend took it a few months back and had the oil changed, tires rotated, etc. My driver's license was never revoked or suspended (thank God), I just can't drive under medical advice and Rochester Rehab where the "Drive On" refresher program is handled is keeping my case open until I'm cleared again for refresher. I can't believe I haven't driven since October 2009 after having had my license since 1972!!
Thanks for your support.