The medical care I am under as not found a solution to my trigeminal pain. It has settled into my right facial cheek area and moves around between my upper cheek, between the top and bottom, lower cheek and my right side molars. It is often backed by my molars in the joint are my mouth moves. The pain is not unbearable but makes it painful to speak in general and very painful to annunciate many letters. My speech has become much more slurred or painful if I enunciate well. This is made my voice software for difficult use. It often misunderstands and is opened up many applications some of which I didn't know I had. So I am going to take a week or so off and see if there's any progress. I find the pain is tolerable if I really concentrate on enunciation. I am finding that pain like this as a cumulative affect on my emotional outlook. To minimize this I'm going to say off my blog for a while. I will leave you with a funny pets story.
You probably know if you follow my blog that over two months ago Jordyn got on the bed and laid on my legs because she was jealous of the kitty coming in to sleep on me. She didn't want to sleep on me she just did not want the kitty to get any attention. I have a blanket that is felt that I call the kitty blanket because Lacey like the texture of it and she would stay on it while she slept. After Jordyn chased her away I have kept it open that she would return someday. One night last week she got up on their when my wife was in here. We are both excited, she came back.'s came up close at my table sniffed around and then turned around and laid down. She is back we said. And she yakked up a bunch of stuff and got up and left. Never came back. We were flabbergasted and didn't know what to think. My wife cleaned it up and said thanks a lot kitty! I guess you like be enough to yak on me, they should feel honored, right?
Come back to post if this pain decreases so knows. I try not to be optimistic because and I'm usually disappointed. I try not to be pessimistic signed up being "eh what ever". It is kind of my model with this disease, yeah whatever. Tata for now.
Phil and Macy
Thursday, March 14, 2019
Friday, March 8, 2019
Animal stories and lessons learned
I don't get any cuddling from Lacey. My wife tries to put her on my legs at night and she goes away after a few minutes. Occasionally now Jordyn stays on my legs for a while after my wife feeds me. Jordyn gets up there to be as close up food as she can. Occasionally I "drop things". A few times a week she stays up there when my wife leaves. She can be so sweet. The main story I have was interaction between Lacey and Jordyn.
Over the weekend it was still cold but sunny out. The sun came in the living room onto a faux leather footstool we have. Usually Jordyn sleeps on it but one day she was sound asleep on the couch nearby. Lacy came over and laid down on the sunny part. She was there about a half an hour before Jordyn noticed her. She gingerly got down off the couch and gently approached the cat. As she came close to the cat the cat rolled over on its side and I realized she had been planning this all along.
Lacey being on her side and back Lacey let Jordyn get close with her nose thinking the cat finally wants to play. As soon as Jordyn got her nose close to Lacey's tummy Lacey brought her back paws up and started poking her back claws into Jordyn's nose. One thing I like about labs is that their fases are very expressive. Look on Jordyn's face was so funny. Her face said what on earth is going on. The cats don't have claws in the front but they do in the back. Her expression was priceless. Then she just ignored it because she's a galloot. That lazy started hissing and batting at her with her front paws and Jordyn thought she was playing. She easily overpowered her it was after a five-minute battle. Were pretty sure Lacey was doing it to have fun. Jordan would never really hurt the cats other than poking them too hard with their dolphin nose. I don't get much cuddling except when Jordyn comes back and sleeps on my legs when someone else is back in the bedroom talking with me.
Lately we have been thinking that Jordyn thinks she is a 10 pound animal instead of a 50+ pounder. Jordyn has never understood the cats. We are convinced now that she thinks that her and the cats are the same. I think I've mentioned she climbs up on the back of the couch like the cats do, keep trying to give the cats her dog toys and likes to get the cats to spar with her like other dogs do at the dog par this brings up another story.
I had a 24 hour body Wednesday was called and then and then cold and then hot. I was miserable and everywhere I could have pain I did. My wife came and got me ready for bed and getting the right support behind my neck helped and so I was able to watch videos. There is a dining room chair in the bedroom for her to sit in when she feed me dinner. It was pushed against the wall. While I am trying to get my temperature right and the pain to subside that beautiful gray cat named Slim comes in and climbed up on the chair. Is very independent and just wanders around all day checking things out. A rarely stays in one place for more than five minutes. He rarely comes in the bedroom where I can see him. So I look over on this chair when I heard a noise and it is Slim. He climbs up the back of the chair and starts batting record of the blinds on that window. He stays doing this for longer than usual. Pretty soon he climbs up on the back of the chair and pulls the shade way from the frame and sticks his head in there to look out. Pretty soon use climbed off the chair and behind the shade on the window. He is having a good time back there and pretty soon I see is that pop out at the other end of the shade. About that time Lacey comes in to check it out because she senses Slim is having fun. Pretty soon she's on the back of the chair and follows him in behind the shade. A keep popping his head in and out and with her up there and being very entertain. Pretty soon she sticks her head out the right side while he has his head out the left side. I am finding it all thing entertaining. Then he gets better. I wife comes in because she hears the noise and Jordyn comes in also because she years my wife and I talking about the cats. She gets very jealous so she comes in to see what's going on. She sees the cats in the window and goes over and sits below the window. As I mentioned labs every easy-to-read faces. She sits there looking up at the cats and she knows she cannot get up there. She just sits there looking up at them trying to figure out a way she can join them. It was hilarious. So one of the worst days I have had physically and some being very entertaining at night.
Today the chaplain visited and I told her about Wednesday how miserable I was and how it ended. It's hard to remember when you're up to your waist and alligators that do their to drain the swamp. I would have to thank God, Lord Jesus Christ, my Savior for nice ending to horrible day. As my health decreases I can only look to the Lord to hold me up and care me through it. The animals are very entertaining.
Over the weekend it was still cold but sunny out. The sun came in the living room onto a faux leather footstool we have. Usually Jordyn sleeps on it but one day she was sound asleep on the couch nearby. Lacy came over and laid down on the sunny part. She was there about a half an hour before Jordyn noticed her. She gingerly got down off the couch and gently approached the cat. As she came close to the cat the cat rolled over on its side and I realized she had been planning this all along.
Lacey being on her side and back Lacey let Jordyn get close with her nose thinking the cat finally wants to play. As soon as Jordyn got her nose close to Lacey's tummy Lacey brought her back paws up and started poking her back claws into Jordyn's nose. One thing I like about labs is that their fases are very expressive. Look on Jordyn's face was so funny. Her face said what on earth is going on. The cats don't have claws in the front but they do in the back. Her expression was priceless. Then she just ignored it because she's a galloot. That lazy started hissing and batting at her with her front paws and Jordyn thought she was playing. She easily overpowered her it was after a five-minute battle. Were pretty sure Lacey was doing it to have fun. Jordan would never really hurt the cats other than poking them too hard with their dolphin nose. I don't get much cuddling except when Jordyn comes back and sleeps on my legs when someone else is back in the bedroom talking with me.
Lately we have been thinking that Jordyn thinks she is a 10 pound animal instead of a 50+ pounder. Jordyn has never understood the cats. We are convinced now that she thinks that her and the cats are the same. I think I've mentioned she climbs up on the back of the couch like the cats do, keep trying to give the cats her dog toys and likes to get the cats to spar with her like other dogs do at the dog par this brings up another story.
I had a 24 hour body Wednesday was called and then and then cold and then hot. I was miserable and everywhere I could have pain I did. My wife came and got me ready for bed and getting the right support behind my neck helped and so I was able to watch videos. There is a dining room chair in the bedroom for her to sit in when she feed me dinner. It was pushed against the wall. While I am trying to get my temperature right and the pain to subside that beautiful gray cat named Slim comes in and climbed up on the chair. Is very independent and just wanders around all day checking things out. A rarely stays in one place for more than five minutes. He rarely comes in the bedroom where I can see him. So I look over on this chair when I heard a noise and it is Slim. He climbs up the back of the chair and starts batting record of the blinds on that window. He stays doing this for longer than usual. Pretty soon he climbs up on the back of the chair and pulls the shade way from the frame and sticks his head in there to look out. Pretty soon use climbed off the chair and behind the shade on the window. He is having a good time back there and pretty soon I see is that pop out at the other end of the shade. About that time Lacey comes in to check it out because she senses Slim is having fun. Pretty soon she's on the back of the chair and follows him in behind the shade. A keep popping his head in and out and with her up there and being very entertain. Pretty soon she sticks her head out the right side while he has his head out the left side. I am finding it all thing entertaining. Then he gets better. I wife comes in because she hears the noise and Jordyn comes in also because she years my wife and I talking about the cats. She gets very jealous so she comes in to see what's going on. She sees the cats in the window and goes over and sits below the window. As I mentioned labs every easy-to-read faces. She sits there looking up at the cats and she knows she cannot get up there. She just sits there looking up at them trying to figure out a way she can join them. It was hilarious. So one of the worst days I have had physically and some being very entertaining at night.
Today the chaplain visited and I told her about Wednesday how miserable I was and how it ended. It's hard to remember when you're up to your waist and alligators that do their to drain the swamp. I would have to thank God, Lord Jesus Christ, my Savior for nice ending to horrible day. As my health decreases I can only look to the Lord to hold me up and care me through it. The animals are very entertaining.
Wednesday, March 6, 2019
Health update
I don't have much good to report as far as my health. MS just keep plugging along few months ago I could move my arms a small amount when I coughed so they moved up on my waist making and coughing a little easier. Now my left arm won't move all in my right is heading that way. The feel pretty pathetic when I have to have someone else move my arm two inches. My main frustration is how much work I am for my wife. Things are not getting easier for in that troubles me because I was supposed to be the one who takes care of her. My neck pain comes much easier because I am laying on my back there is more weight on my head and neck. Some of the meds I gave me help me in the neck area but so far nothing has really helped on the trigeminal. It seems to have settled (hopefully) my right cheek bouncing around between the upper cheek in the lower cheek and many times it is right in that joint of the corner of my mouth. When it is there like now is very painful to annunciate and I slur my speech. Been having some strange pains in my left calf, left ankle and the top of my left foot. Through trial and error my wife has found that Aspercreme with what I call the hot sauce seems to help most. But not is all negative.
My BiPAP machine has not worked well with just the nose mask. For it to work I need to keep my mouth closed which is become almost impossible to do with the trigeminal pain but I am asleep. The machine alarm's because the air just blows feel my nose and out my mouth so it thinks it's not attached. I've been using the full face mask for about a week now and am gotten used to it almost. Until last night, it alarmed again when I had my mouth open. One step forward, two steps back. I can still use Siri if I do it just right and my wife has gotten a baby monitor and that usually wake her up if I call her name even with the mask on. I do sleep better with the full mask so that is good. I have grown a little tired of reading and I found that podcasts of mysteries interesting. I usually bounce between three or four shows and then listened to a podcast or two. Usually fall sleep not long after. Is nice to have another alternative besides reading and watching videos.
I find I still have a lot of phlegm buildup in my lungs. With a full face mask it seems the rest my diaphragm little more than the other one used to so I'm able to cough it up for now though the next MS decrease of my diaphragm. The pressure sores on my bottom are healing. I think the mattress which is special, new seat in my power chair and that I spend a lot less time sitting up are helping. They say the open wound in my calf and ankle getting better but their reluctant to tell me that it will ever close up all the way. I guess will see. One thing I'm always appreciative of his a good night sleep and I have a fair amount of those each week. Some days the aides come and I wake up earlier that I would and so I take a nap in the afternoon. If the nap is not too long it's all have an easy time falling asleep. I think that's it for now and thank you again for reading.
I do appreciate the weekly visit I get from my wife's sister who is retired now. I think she stays busier now than when she worked. It helped me get out of my own head for a while and that is good for me. I don't enjoy being around myself and I do not feel more very pleasant person overall. My wife is so busy I try not to give her extra tasks but she gets home from work the visits are very nice.
My BiPAP machine has not worked well with just the nose mask. For it to work I need to keep my mouth closed which is become almost impossible to do with the trigeminal pain but I am asleep. The machine alarm's because the air just blows feel my nose and out my mouth so it thinks it's not attached. I've been using the full face mask for about a week now and am gotten used to it almost. Until last night, it alarmed again when I had my mouth open. One step forward, two steps back. I can still use Siri if I do it just right and my wife has gotten a baby monitor and that usually wake her up if I call her name even with the mask on. I do sleep better with the full mask so that is good. I have grown a little tired of reading and I found that podcasts of mysteries interesting. I usually bounce between three or four shows and then listened to a podcast or two. Usually fall sleep not long after. Is nice to have another alternative besides reading and watching videos.
I find I still have a lot of phlegm buildup in my lungs. With a full face mask it seems the rest my diaphragm little more than the other one used to so I'm able to cough it up for now though the next MS decrease of my diaphragm. The pressure sores on my bottom are healing. I think the mattress which is special, new seat in my power chair and that I spend a lot less time sitting up are helping. They say the open wound in my calf and ankle getting better but their reluctant to tell me that it will ever close up all the way. I guess will see. One thing I'm always appreciative of his a good night sleep and I have a fair amount of those each week. Some days the aides come and I wake up earlier that I would and so I take a nap in the afternoon. If the nap is not too long it's all have an easy time falling asleep. I think that's it for now and thank you again for reading.
I do appreciate the weekly visit I get from my wife's sister who is retired now. I think she stays busier now than when she worked. It helped me get out of my own head for a while and that is good for me. I don't enjoy being around myself and I do not feel more very pleasant person overall. My wife is so busy I try not to give her extra tasks but she gets home from work the visits are very nice.
Tuesday, March 5, 2019
Homework? From the chaplain.
I meet with the hospice chaplain every other week. Last time she was here I talked about the things that were troubling me. One of which was a murder of a girl who went to my high school that started when I would've been a senior but that year my parents moved to Ankeny so I never met her. This was 39 years ago and I remember the day I heard it on the news. She lived about six blocks away from my wife and I's first house. Her murder troubled me and changed my outlook on life because the brutal way she was murdered and it was at a shopping mall across town one of my wife's sisters was working that night. It all seemed too close to home and until recently it seemed be a random killing. Now they have found DNA and move process proved that the murder was there and was from a town 30 miles away. It seems they have their man after 39 years. So this is brought up memories from that time about this and many other things. Since I have way too much time especially at night think about things I overthink the past. The chaplain name is Julie and she gave me an assignment. My assignment is to spend less time reading about these past issues, think about good things instead of reliving past things I cannot change. I have spent less time reading Facebook and decided that a good place to start with pushing these thoughts away was to start reading the epistle to the Philippians. I will respond to one of the places to read that remind you that there are good things to think about. Philippians lists these were Paul says "rather remember the things that are…". I wish I could copy it here but I'm not able to paste and copy things between aaps anymore. Can I suggest you read the epistle to the Philippians? I still wind down at night and seemed to lose much of my good attitude so my wife still deals with sad Phil. This disease seems to grind person down regardless. It has been good for me to follow the chaplain's advice and I really appreciate it. I no longer can keep up with my newsfeed. Will try to record another post about my general health and post it later in the week. Also have another Jordyn story that includes Lacey. Will try to do the same with that. Take care and look to the Lord for from him come salvation.
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