Who can tell me what the word(well, it’s not really a word) ‘comfortability’ is from? So I had this experience last weekend. This is what happened. I went to hang out and watch the Penguins game with my friend at his friend’s house. There were 4 or 5 other people there. I was apprehensive about this because I’m really uncomfortable hanging out in groups because of my speech. He told me he thought “well just get her in a group and she’ll be fine.” I wasn’t fine. I can’t speak loud, I can’t speak fast. My speech lags WAY, WAY behind my brain. And this is after I destroyed some brain matter. So anyway, I kinda shut down and didn’t say anything and just sat there. A few hours later, my friend’s friend says to me “say something, anything, you haven’t said a word all night.” This made me want to burst into tears and dig a hole and bury myself in it.
I absolutely, 100% know that I make a whole lot of stuff a lot worse in my head than it actually is. But some things really are as bad as I say. Please err on the side of “it really is as bad as she says.” Don’t ever, ever think “well just get her in the situation and she’ll be fine.” That’s a recipe for disaster.
I’m a really weird, ridiculous person and I say a lot of weird things. I was like this before the stroke. However, after the stroke – man did I say some weird shit. Not just the normal very weird things that I say and I’m not talking about inappropriateness. Irrational, inappropriate responses will be rampant and severe after a brain injury. No, I’m talking about saying weird, weird things that have absolutely no relevance and make absolutely no sense to the conversation at hand. It rarely, rarely happens anymore but I was at a wedding yesterday and it happened. The person I was with did not notice anything at all but I sure did. I said “thank you” to someone and I had absolutely no reason to thank this person for anything. Ok, writing that out it seems like nothing but for the first year to year and a half after the stroke – oh my God. I remember this once, it was probably about a year post-stroke and someone came to the front door selling something. I decided to be all independent and answer the door. This person obviously had no clue anything was wrong with me and gave his spiel about whatever he was selling. I couldn’t respond. I’m not saying that I couldn’t speak, I could, I mean I could not respond. I couldn’t figure out in my head what to say so I said “I’m not cut out for this” and he looked at me very confused and I closed the door. What I said to that poor guy made ABSOLUTELY no sense. I can laugh about this now but back then oh man. That stuff used to devastate me. If you say really weird things or your loved one says really weird things, chill out. It’s ok, it’s normal, it happens, it stops.
I was recently watching an old rerun of Friends and someone made a mess or something and Monica said “So this is what a stroke feels like.” I have a thing or two to say about that. I know what having a stroke feels like because I had one. Actually I had a few. Damn, that was a bad week. For me, having a stroke meant extreme, extreme, severe dizziness. I collapsed and even though I was laying on the floor it still felt like I was falling and I literally did not know which way was up. The world was spinning – oh and I puked. A lot. The only thing that made me feel somewhat better was lying perfectly still and closing my eyes. But I was afraid to close my eyes because I thought if I let myself fall asleep I would die. I didn’t have a choice a few minutes later because I passed out. I was in and out of consciousness in the ambulance. I remember bits and pieces of the ambulance ride. Then I really passed out, the doctors did shit for me, and I woke up 3 days later in the ICU with a bald head and a giant scar on the back of my head. Fun times.
I can talk about it, but I cannot talk about my experiences without crying. I have zero control over that but expressing emotion is very, very good. What is very, very bad is not expressing emotion and keeping everything bottled up inside. That’s very very very very bad. Just because you see tears doesn’t necessarily mean the person producing those tears is really sad or upset.
WordPress just sent me a notification that today is my 2-year anniversary of starting the blog. I remember reading somewhere that the majority of personal blogs are discontinued within 2 years because of lack of interest. So good for me I guess! This blog has changed DRASTICALLY from when I started it. I started it because I was an arrogant brat who thought I knew something. Little did I know that I knew nothing and had a hell of a lot to learn. Now this blog has kind of turned into a movement of sorts.
A stroke is not just an injury. If you break a bone, tear a ligament, or mess up a joint somehow you will probably be all better in a few months and have very minimal, if any, lifelong deficits. That’s provided you have a good orthopedic surgeon and physical therapist. If not, you’re screwed. I did not just get injured. This event nearly ended my life and RADICALLY, DRASTICALLY, MONUMENTALLY changed both me and my life forever. The neurologists didn’t offer me anything in terms of advising me on how to get better. I was told by multiple top-rated neurologists and “stroke experts” in the entire WORLD that I was not going to recover anymore at a year and a half. I was not going to recover anymore my ASS. Don’t say that to anyone else neurologists that “treated” me. If I learn of you saying that to anyone else I will drive to downtown Pittsburgh, walk into your office and we will have words. I promise you that. You’d think, you’d imagine that an “expert” on strokes would have mentioned meditation and the MOUNTAINLOAD OF EVIDENCE that exists to support how meditation can fix the brain. You’d think a brilliant neurologist would have mentioned that. You’d think. But no. No one said that to me. Now I’m saying it and will not stop saying it until it is taken seriously by the medical community. Actually, even then I will not stop saying it.
Dean asked me recently if I knew of any videos or anything demonstrating the proper mechanics of gait. I didn’t, but I looked around the interweb and found this. It’s really good. But it’s also kinda boring and technical. But it’s good. The guys that made this have made several videos and have a blog here. Gait Guys you have my endorsement. 🙂
And these cracked me up………
I realize that today is like the holiest day of the year and that these pictures may offend some, but I think they’re f’ing hilarious. 🙂
I have spent the vast majority of my life pretending to be happy when I so, so wasn’t. Then I had a stroke when I was 30. How much can one person take, seriously? I have referred to the stroke as an interruption in my life and Lori once asked me if it was a good interruption or a bad interruption. That’s a thinker. I have come to the conclusion that it’s been both good and bad.
1) I needed something big to interrupt the miserable existence I was living before the stroke. If not for the interruption, I would’ve spent the rest of my life sleepwalking through shit and never knowing that life could actually be a good and happy thing as it is now.
1) I could’ve made the changes I have made with something WAY the F less drastic and severe. I could have made these changes without something that has the possibility of causing lifelong physical disabilities. Notice I said ‘possibility’ not ‘probability.’
So it’s 50/50. Both good and bad. More good has COME of this horrible event, but that’s all my doing. The event itself – bad. Real bad.
So now no more pretending ever, even for another second. I spent a long time living a lie and I NEVER will again. If you know me, you know that I only deal with reality and things that make me happy. I don’t deal with falsehoods or things that cause me to be stressed out, I just don’t deal with it. I’ve been through one of the worst things a human being can go through and it started for me at the age of 30. So I’m going to spend the rest of my life actually living and being happy.
I have been told multiple times, by multiple people, that I saved their life with my blog. I sure wasn’t doing anything lifesaving as a physical therapist. But now I am. I didn’t save any lives by tempering what I say. I didn’t do it by being afraid to voice my opinions. I did it because I’m not afraid to tell it like it is.
I’ve said this on my blog before and like any good stroke survivor I’m going to repeat it over and over and over. Then take a nap. Then repeat it over and over and over again. Then most likely take another nap. Then repeat it some more. My brain surgeon did not save my life. That guy shaved my entire scalp, opened up my skull, performed 2 hours of surgery on my brain for which he was SICKENINGLY paid that kept me alive and prevented me from dying, closed me up then left me to fend for myself with severe disabilities. He did not help my recovery or help me get back to life in the least. No doctor of any kind helped my recovery. How did I find the things that did help me? MY research. No doctors included.
Centralization and Peripheralization are 2 words I used to use everyday, multiple times a day but haven’t used them in 3 years. I can’t believe I never did a blog post about this before. This used to be my thing. I just used those words again helping out someone with neck pain and it was weird. Here’s what they mean. So your shoulder hurts. Now, a lot of people, including doctors, will tell you that something is wrong with your shoulder. Sometimes yes but more often than not the pain that you are experiencing is originating in your neck. One time a patient came to me with a prescription from a doctor that said “deltoid pain.” That’s utterly absurd. That’s actually kind of scary. Anyway so you have shoulder pain and you go to see a PT and she gives you some exercises. You go home and do the exercises. Hopefully, what happens is this…..That pain that you’re having may move. If the pain moves closer to the middle of your neck, that’s a good thing. You want that, that’s called centralization. Keep doing the exercises. Even if the pain is more intense, if it’s closer to midline, that’s good. What you don’t want is for the pain to peripheralize. You don’t want that pain to move further away from midline and start going down the arm or start experiencing symptoms in the fingers. Peripheralization is bad.
Everything I just explained for the neck is the same for the mid and low back. Problems in the low back will cause symptoms in the legs and feet. Sciatica is pain down the back of the leg because something is putting pressure on the sciatic nerve and it hurts. You want the pain to retreat up the leg. If you’re having pain in your calf, you want the pain to be in your thigh, then in the butt, then the low back, then gone. Pain that moves closer to midline is centralizing and that’s always a good thing.
The way to not have this happen again is to be insanely obsessive about your posture.
When this happened to me, I could’ve been like….well what the f***? Why me? Why did this happen and why did I survive? This is bullshit. Wait, I did think that. A LOT. A lot a lot a lot. A lot. I think most people in my situation would’ve checked out. But I didn’t and I have no idea why. But now……see I’ve become pretty spiritual recently. This does not mean religious. BIG difference. Spiritual ≠ religious. Now that I’m 3 years out, have made a pretty good recovery and kind of have a normal life again, I kind of think of it differently. Now I think, well what was the universe trying to tell me by having this happen? Obviously something. If I can change my thinking about this, believe me so can you because when this happened and for the first couple of years afterward, I wanted to be DEAD. Dead, dead, dead, dead, dead. Now I don’t want that.
Another random thought…..when I got sick I was living with an a-hole that went on this golf trip with his buddies every summer. The summer after my stroke I heard him say on the phone, without him trying to shield me from hearing it he said, “I can’t wait for this trip, I need a f’ing break.” What a jackass. I never got a break from this even for a second. The only sort of break I got was when I was asleep and sometimes not even then. Be careful what you say around us.
Random thought #3…..The internet is a magical place. The internet is where I get all my Grumpy Cat pictures, where I check my e-mail, where Facebook lives. The internet is where I found my meditation practice. I found it, ME. I found it through MY research and now I’m telling other people about it, anyone see a problem with that?????? And……the internet is where I started a blog and met all of you people. So I’d like to say in the style of Jimmy Fallon’s thank you notes…..Thank you, world wide web, for existing and allowing me to make all these friends.
Today is Grumpy Cat’s birthday. I had to commemorate it. I apologize if I’ve used some of these before.
On my stats page there was the search term “symptoms.” Now, this could mean a whole hell of a lot of things and obviously I have no idea what specifically the person who searched that wanted to know. But I’ll write something with the word ‘symptoms’ in mind. All the smart people who know so much about strokes say to look for this stuff to determine if someone might be having a stroke. The acronym FAST. FAST stands for Face, Arms, Speech, Time. In PT school they taught us to look for the 5 D’s and 3 N’s. These are Diplopia, Dizziness, Drop attacks, Dysarthria, Dysphagia, Nausea, Numbness, and Nystagmus. If any of these things appear or in the case of the FAST thing if any of those things are not right, F yeah get that person to a hospital ASAP.
Now, what do you do, as in my case, when the person passes out within minutes and presents to the ER unconscious? Hmm? The doctors had no f’ing clue what was wrong with me. So they didn’t do anything. For 2 days. Dean has a bunch of posts on the necessity of an objective way to diagnose a stroke, I couldn’t choose just one to link to.
So a few days later you find out that a part of your brain is destroyed and you had a stroke. I’ve said this many times before on my blog. You could have had a stroke in the frontal lobe, in the parietal lobe, in the temporal lobe, in the occipital lobe, or in the cerebellum or brain stem. It’s the EFFECTS, the SYMPTOMS of the stroke that will vary greatly. The EFFECTS and what you need to work on is what makes brilliant doctors say one of my favorite phrases “every stroke is different.” The size and location of the stroke will determine the EFFECTS. Everyone understand that? The EFFECTS of a stroke will be unlike anyone else’s, but I have the same issue as anyone else who had a stroke, I have brain damage.
The other parts of the brain that are alive and healthy can take over and be responsible for the duties of the dead part. The cerebrum can take over for the cerebellum and vice versa. This sounds great right? It takes a hell of a lot of work and years. Years. Oh and it takes meditation and breath work.
Question to Mariell L. Jessup, MD as President American Heart Association/American Stroke Association
Dean wrote this…..
Please pass on to Mariell L. Jessup, MD in her responsibility as President
American Heart Association/American Stroke Association.
In your Stroke Rounds column, can you address the 5 known causes of the neuronal cascade of death and what is being done to solve them?
2. Glutamate poisoning
3. Pericytes strangling capillaries
4. Inflammatory action leaking through the blood brain barrier.
5. Lysosomal Membrane Permeabilization as a Key Player in Brain Ischemic Cell Death.
I’m just a simple stroke survivor that wants these solved before my next stroke.
Hopefully I can find email addresses for the NSA and WSO. Send these questions to every stroke association in the world and all your doctors, Cleveland Clinic, Mayo, etc. etc.
Everyone of these should know the answer off the top of their head. Anything less than that is pure incompetency. And we need to call them out on that. Its time to knock a few heads.