Ok, so there’s a couple of people who’ve pinged me for help recently, either cancer or strokes. I sent them essentially spam, as the thoughts occurred to me, and kept emailing them. I don’t want anyone to feel as helpless as I felt sitting there in the oncologist’s office, ER, ICU, or where ever, wondering what was next.
Just the other night, I saw that Bret Michaels from Poison had a severe brain hemorrhage. I was on a phone call with work, and I saw “brain hemorrhage” pop up in the ticker on cnn.com.
I was in mid sentence and literally stopped, never completing the thought.
In an instant, all those memories came flooding back. I know what his friends and family are going through.
It’s not a happy place.
I’ve been kind of careful about what I read online. I don’t want to know potential limitations at this point in the game. I don’t want to know about “expected” results. I just want to know about what has worked in the past. Playing doctor google can be depressing.
I never want to know the ceiling of anything. Why put a lid on anything that you don’t know for absolute 100% certainty?
May is National Stroke Awareness Month. Chances are that someone you know will be going through what I’ve been going through the past 5 months. Without sounding too preachy, I’m going to do a series over the next couple of days with tips for folks who may find themselves in my situation.
They’re not 100% certain on the reasons for Anissa’s stroke. The doctor at one point told me that she even focused on the zebras instead of the horses.
Nothing really added up.
Their best guess as to why she had the stroke is blood pressure and the fact that she wasn’t taking care of herself. After the first stroke in 2005, Anissa had been really pretty good about napping. I encouraged it. The months prior to her most recent set of strokes, she was getting busier and busier and not taking care of herself. The naps got shorter, or simply didn’t happen.
She was going, going, going.
How many of you moms and dads out there are always going, going, going?
For your family’s and your own health’s sake: STOP.
Smell the roses once in a while.
Quit looking at your retirement fund and hang out with your kids with no pressure to go anywhere. Wear sandals and a Jimmy Buffett shirt. Sit down with your spouse, get a cup of coffee, and just watch the world go ’round. Hug a friend. If you think about a friend you haven’t spoken to in a while…pick up the damn phone and call them, let them know you still think about them. Life is too short for animosity.
Is it REALLY going to be the end of the world if you’re late with that xyz?
Sorry, I got off on a rant.
By the way, Sandi comes in tonight.
The same Sandi who came and stayed with us twice before.
The same Sandi who had a pizza party with my kids when we were all at a low point, allowing me to go have a quiet “date” night alone with my wife while she was still coming out of the coma.
The same Sandi who brilliantly figured out that the therapists in the nursing home simply weren’t understanding Anissa’s humor and were mis-diagnosing her mental state as homicidal or suicidal.
This time she’s coming with a mission. She’s been having dreams that she’s going to get Anissa up and walking to some extent. About a month and a half ago, she called me and said she needed to be here for that. Based on where Anissa was at that time, I was thinking Sandi was way too early. Due to life, our schedules just didn’t mesh until this coming week.
Last week, the therapists mentioned we may try to start walking with a walker pretty soon, maybe as soon as next week.
No pressure Sandi. 😉
on Apr 28th, 2010 at 8:48 am
Good luck Sandi!!! And of course good luck Anissa!
Keep up the good work Peter, thanks for posting the tips – you can never have too much information.
on Apr 28th, 2010 at 9:11 am
Good luck Sandi and Anissa!!! 🙂
on Apr 28th, 2010 at 9:39 am
Fingers crossed and good luck to all of you! (err, especially Anissa!)
on Apr 28th, 2010 at 4:06 pm
It will happen.
And I should totally schedule in a daily nap to my day.
on Apr 28th, 2010 at 4:13 pm
Thank you for saying this , Peter. It’s a great message.
P.S. I’d count naps in my top ten list of favorite things to do.
on Apr 28th, 2010 at 5:33 pm
Good luck with walking! I can’t wait to hear the good news.
on Apr 28th, 2010 at 8:32 pm
I’ve been following this site and your posts for a while now but never commented. Today, I feel like I need to say thanks. Thanks for sharing your story.
On Saturday afternoon we got a call from my husband’s mother telling us that my father-in-law was in hospital. She told us that they had been out at a town meeting with a neighbour and things had been fine. At least they had seemed fine. When they got into the car to drive home they noticed my FIL was slurring his words and sounded totally confused. He also had no memory at all of the last hour of the meeting they had just been at. They took him to the hospital and it turns out he had a small stroke. Small stroke. It sounds odd. My husband is angry and sad and scared. I feel somewhat comforted having followed your story and felt your faith.
Thanks for sharing.
on Apr 28th, 2010 at 9:19 pm
Thank you so much for posting this. It’s something so many of us need to be reminded of. We are always going, going, going and never taking the time for things that really matter. I can guarantee that none of us are going to be on our death bed wishing we had spent more time at work or keeping our kitchen absolutely spotless. It is a good reminder about what is really important in life. We have become a country of doers and multitaskers, when we all really do just need to chill.
I hope that your wife is on appropriate lowering blood pressure medication. I am not sure why her blood pressure was high, but I hope that it is regulated and doctors are keeping a close watch on it. The nice thing is that you can buy an over the counter monitor to track it daily, heck, hourly if someone is so inclined.
on Apr 28th, 2010 at 10:46 pm
I love that you’re still posting here and truly appreciate the message. It’s so hard to slow down and the reminder is definitely needed.
Fingers crossed that Sandi is the good luck charm this weekend! 🙂
on Apr 29th, 2010 at 12:10 am
I am a complete stranger who has been so inspired by Anissa and the work that she has been doing and your candor in sharing your experiences as a caregiver. I do not recall how I heard of her and you, but you have been in my prayers since the days following the stroke.
My journey as a stroke caregiver is for my son who had a stroke when I was pregnant. It is a different journey that what you are going through, but so many of the terms and emotions are the same. Your story has touched me and I will continue to be quietly cheering Anissa, you and your entire family on from my corner of cyberspace.
I am so happy to see you posting a Public Service Announcement! People do need to be aware of strokes, the symptoms and what to do to support the family members with strokes. You are doing a great thing by making people aware of strokes!
I would like to see if you might be able to add one more thing to your announcement. May is also pediatric stroke awareness month. Many parents never think that they should be on the look-out for these symptoms in small children. I am helping to spread the word that people need to be watching their children for symptoms also & educating themselves on what to ask doctors – Kids do have strokes (http://www.kidshavestrokes.org/)
Once again Peter, you are doing amazing things. Take care of yourself & I look forward to seeing all of the progress!
on Apr 29th, 2010 at 8:02 am
Nope, placing no limitations on Anissa’s outcome. What I can interject is the amount of work it will take to show progress. Would it be worthwhile to compare her rehab to a 4-year college degree? Four.years. Consistent.daily.hard.work. Since many cannot accommodate that kind of commitment, doctors predict the usual limited outcome.
Stress indeed promotes a stroke-risking-lifestyle – eating badly, exercising little, not taking meds regularly. As or more important than naps for some.
Take the time to cook meals and enjoy them as a family. Even pizza from scratch is healthier than from the freezer. My public service announcement for the day.
on Apr 30th, 2010 at 12:03 am
I too have been following and keeping you all in my heart; just haven’t commented until now. Thanks for the PSA and the “reality check” on what’s important in life. Truer words have not been spoken (typed, read, whatevs)!! Sending Anissa and Sandi all the luck! And of course, you’re all still in my heart. Tell Anissa that I’m glad to see she’s posting again!! Tough chicks rule!
on Apr 30th, 2010 at 1:41 pm
I had shivers when I read Sandi was coming to get Anissa walking. It will happen. And it will make a huge difference in her recovery.
My mom is still recovering big chunks of ability and it’s a year and a half since her stroke. And she had a complete blockage to her left lobe for at least 2, probably 3 weeks. The kind of stroke Anissa had (from little bit of research I’ve done) has even greater potential for recovery because islands of brain cells were protected from the blood and now her job is to get those islands wired together again.
What words of wisdom about slowing down – and getting enough sleep. I must do this if I ever expect to see my grandchildren.
on May 4th, 2010 at 1:48 pm
Well…this explains ALL the creepy/weird dreams I’ve been having of you guys for the past 6 months! And for the record, there’s never been animosity, just sadness…
on May 6th, 2010 at 12:34 am
I bet you guys are having one heck of a week 🙂 I mean that in a good way. Bringing awareness in a big way! Keep it up, it’s a good thing <3
on May 7th, 2010 at 1:25 am
There is no ceiling. Only wide open sky. My husband had a stroke 9 years ago. He is still in a wheelchair but mentally great. His memory is better than mine. We just tease each other about all of our minor/major issues. He also makes improvements that I don’t see because I am with him all the time.
When we see people that haven’t seen him for a while, they say how much better he is talking. (He never shuts up so he has lots of practice.) Improvements will never stop so don’t let anyone tell you different. My husband was never supposed to talk, swallow, eat, sit up or anything else. Guess what? He can do everything except walk. He calls his wheelchair his mobile throne. (He thinks he is a king)
Keep the faith and good things will keep happening.
on May 7th, 2010 at 7:53 pm
This post came at a good time. i needed to hear some of things you said more than ever right now. Thank you.
on May 9th, 2010 at 1:26 pm
I haven’t commented lately, but I’m thinking of you all constantly. Keeping you in my prayers, and hoping that Sandi’s dream comes true!
on May 12th, 2010 at 9:25 pm
What an inspiration YOU are to the rest of us.
on May 23rd, 2010 at 5:23 pm
I totally need this reminder on a daily basis. I will pass on the Jimmy Buffett, though, ok???
You guys continue to inspire me every time I read an update or see a message. You rock.