Hmmm…..has been 5 years since my strokes? Was it that long ago? or does it seem short since then? I dunno.
I think, I mean I think, without my facial-right-cheek @#$$ ^ pain, I think I would be ok with it. Without the pain I think it would be hard, terrible hard dealing with speaking again and losing half of my clients since my strokes, but I think I can deal with it. I know I will be depressed about it off and on, maybe depressed for several months.
I was ok with having a stroke and meeting the person who I love, Bruce. I was ok trying to speak again, even though it made me frustrated about it. I remember using my iPhone to dictate and it could barely understand what I am saying. “Cheeseburger” would sound like a “eat waffles”, and then I started yelling bad words into it. Grrr!#$.
Speaking about 3 months after my strokes. Maybe you can understand only half of what I’m saying.
But my pain is real and is there, and not a long, long bad dream like I wish. My pain first started when I woke up on a Saturday morning and was gone the next day. Uh??? I was relieved. Then it started again when I woke up on a Saturday morning two weeks later, April 16, 2011 and be there since then.
To me, the stroke survivor, the pain messed things up a LOT, especially when trying to speak. When it’s worse, my right side of my mouth is stuck, won’t move, and feels like my mouth is pulling forward and up, and causing non-stop pain. Sometimes the pain spreads and can go up even with or above the eye. Even smiling makes the pain worse. The non-stop pain means non-stop pain. I would wake in the middle of the night and pain was still there. That’s what it feels like to me inside.
On the outside there is knot about 1/2 inch long and 1/4 wide above the right side of my mouth and next to my right side of my nose. I feel the knot when I touch it and touching it makes it throb and sometimes makes the pain worse.
It makes it very hard, sometimes can’t do it, to make my mouth flow like a normal person and try to speak. And if I get my mouth to ‘move’, my mouth feels and looks the same, but the pain is horrible. I started crying in the second day of my speech sessions because the pain was so bad, so I stopped the sessions.
I started doing mouth-tongue-eye excersises but that hurt like a devil and sometimes make it my right side cheek feel likes it on fire from 5 minutes up to 2-3 hours, average about 30 minutes. I would do them for about a week and stop because of the pain. Then maybe two months later I would try it again, but the result was the same – pain, pain and more pain.
My crooked speaking at Legoland, April 8 2012
Oh yeah…I have been to three dentists, two endodontists, one endodontists specialist (who thought he fixed it but didn’t), two neurologists, two pain managements and one ENT (ear-nose-throat doctor) about my sinuses, but nothing. With a lot of drugs, nothing. No one knows what it is and/or knows how to cure the pain.
To me, I’m guy who can’t speak very well and is pain all the time and the pain is gets worse when I try to speak, I was/in miserable. Sometimes I would like to be in the bed all day long, hopefully sleeping, but being in bed. I tried to kill myself in late 2011 by taking two handfulls of warfarin (blood thinner). I thought I would die in pool of blood but turns out I was going anemic because of most of my blood was going as I pee’d and then die that way instead.
I would like to go out of my house, I would like to go to the store, I would like to go to Microcenter and Fry’s, I would like to go on trips, I would like to have fun with my partner Bruce, I would like to do several days of geocaching with my friends, I would like to have a nice smile again….but I can’t because of my #$@$# pain. I went with Bruce to many things in the past 5 years but my pain wore me down and I wanted to go home, not wanted to talk to anyone, be in bed and turn outside things off.
If my 3 strokes were quick – BAM! BAM! and BAM! – and then it’s over, that is different than 3 strokes – BAM! BAM! and BAM!…a long pause… then BAM!, a right facial non-stop pain. It seems me that strokes are still going on, even though who knows that facial pain is part of the stroke or not. I say it is because of the type of strokes that I had, ischemic strokes that affect my right side of me to go weak and affect my speaking.
I decided in March 2014 to close my computer business. I love computers (but talking with people about the computer problems not so much, before and after my strokes 🙂 April 30, 2014 was my last day of my business. Even though I was relieved not to be talking to customers anymore, that brought me down even worse.
This also allowed me to move to Pahrump with Bruce later that year. After moving here I was slowing relaxing. Being away at least 4 hours away from my customers allows me to relax. Even though I closed my business there are several customers that I work with remotely, but that it’s slowing fading.
When I moved here I thought I might open another computer business when my pain was manageable, if it ever becomes manageable. Bruce and I talked about it and I decided No, most of the my customers would be probably residential and residential usually don’t like to pay very much and they are usually pain in the ass to work with.
I think that decision of No was the final push to throw me off the depressed bridge. I was so depressed after that, deeply depressed. I kept thinking to myself nothing to do, nothing to do business wise, nothing to do at home because Bruce was taking care of most of it. My job is to wash the clothes, vacuum and mop, and the grill. That’s it, that’s it until I die.
But that’s completely opposite of what I said earlier: “Sometimes I would like to be in the bed all day long, hopefully sleeping, but being in bed.” You think I would be happy, but I’m not. I would like to be in bed if the pain is still there, but I don’t want to. I would rather be do something else.
I started to see a counselor. I started coming out of the depression about a month later, most of it was talking to someone – mean talking, having a converstation. To someone who asks me a question and stops to allow to me to answer. It may take a long time to start speaking (in comparison to other people’s quick responses) and I have to repeat several times for her to understand, but it allowed me to speak.
There are mainly two types of people that I’m around. Type one is to talk, talk, talk, question, talk, talk without even pausing, then another question, talk, talk, talk and then another question and then stop give me only microseconds to answer it and if I don’t ASAP reply, they would keep talking, talking, and talking until I fade out to what they are saying, if I hadn’t already.
Type two is to ignore me and asks Bruce the question, as if not only I can’t speak well from the strokes but also with missing some Leggo’s of my mind because of the strokes. But I think type two is afraid of me in a way and don’t know how to deal with the person that has a stroke. But neither do I. I’m torn in talking to people, to make it work even though I’m in pain and scared out of my mind talking to people, or just be invisible.
I say the pain is overall going down since it started on April 16, 2011. Sometime it’s high but the high is not as high as it used to be and the high is less frequent. Since the pain has been down I’m doing my mouth-tongue-eye exercises more frequently and the pain has not been bad. Our house warming party was fun and was difficult to talk much, but I did.
And I’ve been smiling some 🙂
Happy Five Year “Strokes” Anniversary!
The T-shirt I’m wearing Bruce bought one for his Dad too because both his Dad and I LOVE Heinz Ketchup and thought we would be Heinz Ketchup Twins but unfortunately he passed away before he had chance to give to him.
p.s. After watching this video I notice that right side of my mouth is still going up. Uugh.