Taking some time off

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.

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.

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.

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.

Pet story and health update

I am finding that posting to my blog is getting more rare. My days of being alone long enough to post are Tuesday's and Thursdays. Some weeks I am really far behind on my Facebook newsfeed and or email. By the time I'm done wrestling with my voice software I don't have much time to post on my blog. I had hoped my blog might help people with MS but the number of hits on my blog has not gone up in the years I've been posting. One of its main reasons is to have in one place updates for my relatives and friends. I'm trying to concentrate on that aspect more than anything else. I enjoy posting pet stories and a few pictures but is hard to get the pictures because I cannot take them myself. The other night is an example. Lacy was sitting on the back of my wife's main couch off to the opposite end. Jordyn is becoming more and more of a jealous dog. She got up on the back of the couch just like the cat so that they cat could not get near my wife. Then Jordyn started poking the cat with her nose like a dolphin does. Lacy will not just run away anymore and pretty soon she's got her paws wrapped around Jordyn's nose and she hits her when she can. She is hissing and making weird noises and Jordyn thinks she is playing. We are convinced that Jordyn does not know there is a difference between cats and dogs. So she keeps getting a little more rough with the cat and pretty soon they're making a lot of noise. My wife is afraid for the cat and tells the dog to leave the cat alone. I tell her but it's very entertaining and I don't think the cat will get hurt because she can leave at any time. I think it is hilarious a 60 pound dog does not know she is not a cat. Usually each week my retired sister-in-law comes over to feed me breakfast and keep me company. Jordan does not want to share so she gets in between me and my sister-in-law so she has to push her out of the way to feed be. As this is going on Jordyn climbs on the dining room chair with my sister-in-law. Jordyn does not know how big she is and it is pretty funny. I realize now that a lot of the things Jordyn does or out of jealousy. When Matt put me back in bed after lunch Jordan gets up on the bed for my feet go and she won't leave. I realize now it is not because she thinks that bed is hers but it's because she does not want to share Matt with me.
My  latest health update is that the pressure sore on my bottom is closing up. The doctor from the wound clinic said it would probably never heal up. My wife attributes improvement in I spend a lot less time in my chair, some days not at all, after I got the wound the insurance company would pay for the improved seat that they would not cover a few months earlier. Another genius set up by insurance. Spend thousands to fix the wound but not $500 to prevent the wound. Also a gets cleaned and new ointment on every day by my wife. The wound on the side of my leg (calf and ankle) is much slower but seems to be healing. The nurse visits twice a week and measures. They also allowed the use of an ointment that contains silver. It is very expensive but seems to have a little more effectiveness. The home care people visit each morning mostly around 9:30 AM. They put me in the chair on those days and Matt put me back to bed after he feeds me lunch. This bed is very comfortable and as a special mattress that is supposed to have a number of air cells that are inflated in a staggered pattern to reduce pressure on my wound. I don't notice it but they say it is there. This bed is very comfortable and some days I wake up feeling like a little cocoon wrapped around me. I can only stand one day though without getting out for a little while.
This I have been having more cognitive issues. It takes me a long time to decide what day of the week it is. I get confused about what time it is even though I can see the clock. Have been having problems with my BiPAP mask. The one I've been using since I got it was the one that fits over my nose. I was able to keep my mouth close and if I didn't it would just blow through my nose and out my mouth. This would make the machine alarm thinking it is not connected anymore. The last week I started having problems in waking my wife up 3 to 4 times a night. I was having trouble sleeping with my mouth closed. I trigeminal pain has kind of settled in that joint of my mouth on the right side. Closing my mouth hurts at spot and then the alarm goes and I sleep right through it. Last night I tried the mask that covers my nose and mouth. I never alarmed so my wife so good, Yea. Strangely Siri can still hear me if I need to call my wife. I have to time my speech with the breathing machine. Last night I would say was very difficult to get used to and I hope using it will be easier for me. My mouse software still follows my mouth so I can watch videos and play radio shows to fall sleep to. I have also had a weird pain and shows up in my left foot, ankle and calf. One of the aides what's icy hot on it and that seems to help. If the pain shows up in my foot or ankle at night my will lay jobs around like leaping Larry on the Seinfeld show.
Not sure when I forgot what I'm done for the night. Take care dear reader.

Sweetness

It is Monday so here is light fare. Even though I don't work anymore Mondays are still blah.

Jordyn has papa trapped.

She waits for treat even though she spread papers around. She knows cuteness wins and who knows maybe it was the cats.

She is trying to be patient but hurry. Please!

Rejoice, again I say rejoice

I'm not sure how much I'll get to post today. I have a lot of phlegm rattling around and I can't seem to cough it up. I just wanted to mention that Friday around here are pretty busy. In the morning of the two aids that get me up and in my chair in the living room. On Fridays there also here to help the nurse or lately has been a nurse and trainee. And then the social worker and the chaplain switch out every other Friday. Yesterday was the chaplain's turn. I was looking forward to it because I have been pretty low emotionally lately. There is a Facebook page and asked stuff about growing up in the 70s and 80s. They ask you remember this or that. When I first saw it they address a murder that happened when I was recently married and had a house. That murder changed my perspective on society. Before that I was rather naïve and after it is seem to open up the Darkside. It's been 39 years and recently they found a way to test DNA and they found a person who matched. So now this website deals a lot with that case and it has brought up many things for me to think about back then. There were a lot of things in my life when I was still a teenager at home that were unresolved. My stepmother came to me and my sister. They think back and relive things trying to think of way that I could have acted to avoid that. He goes around and around in my head. No matter what I did my stepmother found fault. I finally gave up trying and they kicked me out of the house at 18 for really a very tiny reason. The place I work at was a restaurant called the Springhouse. I really enjoyed it there and like so many of the people. Since I was still very naïve I think I hurt one girl's feelings that I thought was a friend and then want to date her. Naïve me, I thought I would ask my parents for the use of the car because my stepmother always complained that I just did things and didn't care what they thought. When I told them I would like the car the next Friday or next one after that it was like the 3rd° in a TV show. She must asked me 20 questions and she decided that absolutely not, that this girl could not be good for me. The whole thing seems surrealistic and that goes around and around in my head. Once again she humiliated me which was what she had been doing for years. I was so humiliated I avoided this girl for two weeks and never could tell her about it. I'd relive this over and over again trying to think of what I could've done differently. I no one thing I could've gone was explained to her but I was just too humiliated and embarrassed. I think I probably left her feeling like there was something wrong with her but there wasn't.
I talked the chaplain about it and she thought I was spending too much time dwelling on past things. I agreed but was stuck in this cycle pain the because I have way too much time and think about things. Especially when I tried to go to sleep and takes an hour or so to get to sleep. She test me with homework to try to think of what God wanted me to think about and to quit dwelling on past things I could not change. I agreed this was a good idea and I have to read that Facebook site less.I also decided to change what I'm reading in the Bible the book of Philippians. If my memory serves me correctly this letter stresses being joyful in Christ regardless of exterior circumstances. I have very serious issues physically and problems that go along with that emotionally. Sometimes I feel pretty isolated but most of the time I'm fine. I became a Christian and accepted Jesus Christ as my Lord and Savior when I was 25. Except for some dark times in 2009 I can say I've never felt alone because he is always with me. I don't do him justice putting these old memories circle around in my brain and affected my outlook. I started reading Philippians today and is very hard to read it without being uplifted and feeling the joy that the apostle Paul promotes it. Rejoice, I say rejoice. I know I have a lot of physical issues and just when I get used to the ideas of what's going on with them they seem to morph on me and I have a new set of things to deal with. I main caregiver is my wife and I try as hard as I can to be a light burden on her rather than a heavy burden. Since she works really hate having to wake her up after she's gone to sleep. Problem is she goes asleep a lot earlier than me. Another problem is that as I get settled in it takes 20 minutes to half an hour for me to know if is a comfortable working the situation. Temperature is a big issue. We set the thermostat at the same temp. One night I have to wake her up because I'm cold and I need that covers pulled up on my shoulders. Then last night same covers, same temperature and I have to wake her up at 130 because I am cooking and being overwhelmed by the heat. I really don't get the swings in temperature. It is then that I really really really wish my arms move to so I could move the covers down. So far she is been unbelievable supporting me. One of my big fears is I will burn her out.
Jordyn is another thing. She rarely listens to me or shows me affection unless she is with my wife and I. The other day it kept telling her how sweet she was and I wish my legs moved so I could play with her. I can tell she loves to be chased. Sometimes she will get a paper plate or napkin and she will go to the center of the living room. Her hope is that my wife will chase her. If somebody goes for the paper she will start running from one account to the other and then tear past them and run down the hall. And she cares back down the hall and runs around the living room. When she is outside a lot of times she won't come in and I know she wants somebody to run in the snow and chase her. I kept telling her that I would love to do that but I can't. For some reason seem to understand and now she shows me a little more affection and she does consume me when I tell her to a little bit when somebody's of the door for my wife comes home. She used to go bark at the door trying to hurry them now just calm her down by saying just wait hun they are coming in. Now when she comes back when my wife tease me she will lay down sideways with her head on my leg and sometimes go to sleep. I tell my wife that I know she's playing me open get a bite of my food at the end my wife says that's not going to work on me and I say is on me. She knows how to play me. All I have to go now I'm starting to have to correct too many times that I'm out of breath. Take care dear one.

Miscellaneous posts

One thing I forgot to mention yesterday was that I started listening to podcasts of the old mysteries that were made before TV. They give me something to listen to when I'm tired of holding my head up to watch Amazon videos. If anyone has suggestions for other podcasts please let me know. I'm not sure if these mysteries help me sleep are not. They are full of dramatic music that just pops up as the plot goes. They give me one other option out something to do in bed. This voice software is supposed to learn my voice but it does not seem to. There are quite a number of things that it can never ever post right. One of them is delete that. That is supposed to remove last thing I said. A large share of the time it does not match what I say so I have to say the remove command and mentioned earlier. Most of the time when I say that command it reads me what I just dictated. And never does it the first time but reads me what I just dictated. Sometimes it is once and sometimes it takes five times. The strangest one is that I will say delete that and it will bring up the print screen which confuses me. How can possibly get print out of the word delete. I know my speech is getting worse especially with my trigeminal pain is on a rampage but some of the time like today is not. It's weird that I find I have to humor a software. When I worked I spend much of my time humoring people and asked for ridiculous things. It seems like a traded work frustrations for software frustrations. I guess I can't escape dealing with frustrations by now working anymore.
Yesterday my neck pain went crazy. I think I pulled a muscle in my neck when Matt put me back in bed after lunch. I remember trying to lift my head and feeling a pain in the right side of my neck. It just kept getting worse and by the time I went to bed none of my cervical support pillows would work. I'm allowed to take one morphine between lunch and bedtime. I only do it if my neck hurts. I had the lidocaine put on my neck three times last evening. It wasn't until bedtime that all this stuff started working. Around 1 o'clock I was finally able to fall sleep. I got my wife of out of her bed about three times last night but did not wake her after she went to sleep. I call that a win but she probably sees it as still a frustration. I being a pest. Like Popeye said "I am what I am and that's all that I am". That gained a life philosophy from cartoons I watch as a kid. Sometimes I think I am a little strange and sometimes I know I'm a lot strange. Thank you again for reading my blog. Have a great weekend.

Paradigm shift and other updates

It is getting it more and more difficult to post. Every Windows update, about two weeks, slows my computer down even more. This makes dictating slower and much more difficult to correct because by voice is a little worse than before. But the main reason for this post about a mental change have faced this week. A few months ago the wound doctor, and I like her a lot, told me I skin was failing and could no longer heal itself. She recommended hospice and I found out hospice is not just care of terminal people. After the wound doctor we had a visit from a palliative care nurse and along with what she said and the doctor told me and what I knew about my condition I felt I had months to live rather than years. I am at risk of pneumonia because of that diaphragm problems caused by MS and now I had danger of infection and if it made it back to my blood I would have weeks to live. Though spiritually I'm ready to go home to be with Jesus at a time. My wife and sons discussed the other aspects of me being quickly terminal. I no longer want to be treated or go to the hospital so a of these things would probably be terminal. Now I am finding out by pressure sore on my bottom is healing up and much of his closed up now. There is still an open spot triangular-shaped a little larger than a quarter. I spent very little time in my chair and I believe that is helping a lot to. Wound on my leg is getting better but not healing as well as the pressure sore. I talked to the hospice nurse yesterday and she told me that I would not get kicked out of hospice because I had other pain issues to deal with. Now I am realizing that I'm back to thinking years before I pass rather than months. I felt like emotionally my wife and sons that I have accepted my passing and now we have change mental states. This is feeling very hard to do because we were ready and now it's hard to think about.
I trigeminal pain is come back rather strangely. Came back on the right side of my face but toward the front. Each day would be different some days it will be the top and some days would be in the bottom. Some days it would include my gums and some days it would not. In a couple of days ago it was all over the roof of my mouth and both sides of my gums and lower side of my right gums. It is back to transferring to from side to side with just a touch. It throbbed and pulsed. I've been trying to decrease the medication that helps the because it affects my enzyme balance. I was just about ready to drop one the day and the pain came back. Some days it seems like I can't catch a break. This is really hard on my wife because she can't do anything to help. Now after increasing the medication for a couple of days the pain is dulled a little. My neck pain is probably a little worse. Couple of days recently the pain is been about 10. I use Aspercreme with lidocaine and that has helped but recently I have been needing more than once a day. Also I have been getting these weird cramp like pains in my left leg. The medical aids have been rubbing rubbing it with icy hot. The weirdest thing is that I get this pain the top of my foot and the top of my toes but not the side or bottom.
There are some new things that were on the positive side time forgetting them now. One thing is that Jordyn has been listening to me. I sweettalk her and tell her I like her. She seems to understand something. I tell her that I wish I could my arms and legs side to play with her especially outside in the snow. No one will play with her the snow and she wants somebody chase her around but nobody will. Poor little puppy. Lacey has dumped me. She hasn't gotten up on the bed on top of m for six days now. I called to her when she walks by and's just keeps on going. Oh well I have to take what I can get. Maybe Jordyn will start spending time with me when my wife is at work. I think she is afraid if she is not in the living room she will miss something that is interesting. One thing that has been a plus is that with hospice I get some home medical aid where they come and get me dressed and feed me breakfast in my power chair. This has lower the stress on my wife some. I am glad because it's hard to work full-time, take care of me full time and take care of Jordyn.
I can think of anything more to post. My memory is gotten very spotty. I will call my wife to come back and she'll say just a minute and by the time she comes back I will have forgotten what I wanted. I forget what I'm talking about in the middle of a conversation and I feel odd because of it. All the of the people I talked to are very tolerant. So I will sign off now and thank you again for reading and God bless you.

Jordan the sweetie pie

While I am in bed at night before I go to sleep, sometimes up to an hour, I think about things to post on my blog. Unfortunately when I go to post I have forgotten most of them. So instead of a serious post you get cat and dog stories. I memory is really starting to get bad. I talked to my sister on the phone over the weekend. Asked how her husband and was we talked about him and his plans to retire completely. He retired John Deere years ago and after three weeks with no work he became so bored that he has been working part-time ever since. At the end of the call even though we had discussed in my name earlier I could remember his name and I said to tell her husband that I said goodbye. It felt kind of weird to forget his name that quickly. I often have to ask my wife and I asked her a question if I had already asked her this a few minutes ago. I guess I learned years ago that MS "is what it is" and I'm just along for the ride now. Just one more thing my wife to worry about, yea.
The problem is story is about Jordyn. I have mentioned how sweet she can be. I have two fairly regular aids that get me dressed and put me in my chair, drive me to the living room, I just me for the PC table, get me coffee and feed me breakfast. One of the aides is not a pet person. Jordyn has made her love to cuddle with her before she leaves. She Goes home and tells her kids about the sweet dog. Her kids ask her why they can not get a dog. She tells them that Jordyn is very special and they probably would find one as sweet. I have told the aides that Jordyn's motto is "there is a sucker born every minute". The other aid has three German shepherds so she is used to her tricks.
Just to mention computer problems, my voice software bombed out and I lost the rest of this story is so now I tried to re-create it. I have been having problems with my smile mouse, when I talked to my voice software the cursor jumps all over the place and I never know unless I am paying close attention where it ends up, so bear with me. I have a raspy voice today and that seems to affect the voice software. To continue the story:
not long after the aides were gone the nurse came along with her trainee. Jordyn was pretty calm today. I think because she has on her bark collar which is a story in itself. We had one originally that when she barked it shocked her strong enough that she yelped when it went off. When she Yelped it then set off again and this started a circular thing with Jordyn. My wife chased her down because she was running around terrified. When she caught her she took the collar off and held her till she calmed down. I know my wife didn't want to ever use that again but I'm the one who has to listen to her bark for hours before my wife comes home. I told her that I didn't want her to ever wear that one again. It seemed a little cruel and I agreed that my wife that we didn't want her to wear that again. So to continue the two nurses came take my wound dressing on my calf.
Recently my wife purchased a different type of bark collar. The shock is much lighter and she can ignore it if she wants. The other night started barking at the window for my wife to come home. She barked six times and then she decided he would go lay down instead. I think this collar is just enough to annoy her and not really hurt her. So far we like this one and I hope it keeps working like it has.
The trainee nurse got down on the floor to hold my heel up while the nurse cleaned out and put new dressing on the wound. While the trainee was down there Jordyn was attached to her and was so sweet. I think when people like that visit they end up wishing they could stay and hangout with the dog. After the nurse pushed back from dressing my wound Jordyn went over to her, put her paws on her leg and put her head up to hug and get hugged. She took this to mean that it was okay for her to climb up on the nurses lap like she does with my wife's sister who visits each week. It is so funny to see a 60 pound lapdog. She is such an affectionate dog. She is very easy to love even if she is annoying other times.
I am running out of breath now. And I'm saying things two to six times to my voice software and many times needing the use the virtual keyboard. Is very tiring. I will sign off now and thank you again you reader.

Neck pain update and more

It is amazing how much different an outlook one can have with out continuous 24/7 pain. My neck pain when it was continuous turned me into a blubbering baby. Yesterday my neck pain starting to abate. I think I had a stomach bug from Sunday until yesterday. I have found that when I get a cold or stomach bug it always makes my neck ache. I have had neck problems since I was in a car accident When I was 20 (I went off the road no collision with a car just a driveway embankment into a farm field). Numerous doctors have looked at it and found nothing with my spine and so have never found anything. I just have pain and have found that Aspercreme with lidocaine helps the most. When I get a fever or a virus nothing helps the pain. So continuous pain for anyone who has it understand what I mean. It tends to wear you down emotionally.
Don't get me wrong. I am and I think my wife is prepared spiritually for my passing. I don't think either of us can be emotionally prepared look part of me looks forward to getting out of this useless body and part of me of the want to leave my wife and others who care about me. This disease has changed my view of the day to day faith and the Bible teaches about. I don't believe anything can change my core faith in Jesus as my God and Savior. Jesus died for me and no matter what I go through and know this is true. The faith the Bible teaches is in two parts. One is the saving faith one has in the work of Jesus on the cross where he suffered and died for sinners who accept him. This software is to "whosoever will". There is another faith the Bible teaches about and that is faith at the troubles and trials we go through we learn of his character and he helps us in this how we learn more of God's character. There are many who mix up the two. Paul writes to Timothy of "rightly dividing the word of truth". This implies there are divisions God's word. There are so many good churches so much good ministry available and that Christian needs guidance to help with this understanding about how God's word is divided.
Well that's about all I have to say the day. I voice software and my voice are clicking today so I am able to post stuff. All I have left is a couple pet reports. There are many more stories that I don't have time to mention. Lacy the female cat is been sleeping either on my lap are between my legs almost every night three weeks. It is nice to have a little bit of companionship since I no longer available to sleep in the same bed as my wife. This hospital bed I have pretty comfy but I miss her terribly. Is pretty frustrating that I can't even move my covers and I get cold or hot and I have to wake her out. Last night was an example she had just gone to sleep I realized my shoulders were too cold. I had to decide to I wake up now wait for a couple hours. I decided now was better and I never woke her again so I think that it was a good decision.
Yesterday night my wife, me ready for bed and as I was settling in Lacey got comfy on my lap. Jordyn jumped up on the bed because she is just a jealous little girl and doesn't want the kitties to get any attention. Once my wife leaves the dog never comes back to see me but she could when the kitty was on me. I yelled at her get down and then my wife started calling her she finally got down without poking the a cat with her nose which is how she makes the competition leave so she gets all the attention. She is a pretty sweet dog or a very annoying dog. Not much in between. When she is sweet she is unbelievably sweet. I'm running out of wind so I'll sign off now and thank you for reading my blog. God bless you dear reader.

Rough week

Sorry I'm not able to post much this week. At seven problems and neck aches off the charts along with my trigeminal pain. I spend a lot of time wishing I was home with Jesus. Keep waking up in the mornings. Is will is better than mine. I hope I am able to post more next week. I've also had a low grade fever each evening.

Long-awaited update

This was originally Written last Monday I'm getting around to finishing it today Monday the 28th.
I don't have any big things to post about but I thought I would do an update. I had a fairly good weekend and did not have any really really low points emotionally. Saturday I never got out of bed. Sunday I got up to watch the Rams and the Saints play. It was a good game and I suppose the saints fans forgot all the no calls that got them to the Super Bowl when they played the Vikings. After the game the coach said their strategy was to hit Brett Favre so many times that he would be afraid of rain on the roof. He mentioned the referees and later in the week the players made fun of the referees because they let so many late hits not get called. I think the referees remembered some of those comments.
The trigeminal pain is still there but it is on the edge of tolerable when I talk or eat. The numbness in my tongue pain and in my face are making it increasingly difficult to use this software. I say things to my son and I think are very clear but they don't come out as clear as what I hear. I have to accept I will not be able to the use this software very much longer. The dog barking in the other room doesn't help either. She starts barking in the afternoon when she thinks my wife should be home. She keeps barking until she comes home so it works every time, LOL.
This is new on the 28th:
I have had pretty even emotions all week. Mostly blah and not many Highs or lows. I cannot say that I am accepting the loss of my right hand but have accepted that I am completely dependent on other people for everything. This is very hard to deal with. For 40 years I have fixed things and take care of things around the house. Now my only role is to try to explain it to others. This is pretty much impossible because I am a poor communicator. I always found it easier to just do things and no one else except my son Dan ever seemed interested in learning. Now it is too late for me to teach things. I'm not sure but God's plan for me is but I just keep getting more and more isolated, spending more and more time in my bed. After all the Lord many times that I'm ready to come home. My loved ones understand this and accept it but you know there will be pain on their parts. No one looks forward to that. Couple weeks ago the cat started sleeping between my legs again and I'm not quite so lonely at night. She moved around a lot and sometimes upside down and sometimes hanging over my legs. Her movements are usually gentle just remind me that I am not alone. Well I don't have much more to say no trying to post again a couple times a week. God bless you dear reader.

Rare cat species

We thought that we were getting a chocolate lab. Turns out we getting an extremely rare animal. All we have is a 60 pound Chocolate cat that sits on the back of the couch. When my wife is home you will get up on the back of the couch behind her. Is very silly and does some strange things. She loves the snow and prances around in it like a horse.
About a week ago lacy the female cat started sleeping on top of me. This makes Jordyn extremely jealous and she whines at the cat on the bed. And she goes and whines after my wife. I am pretty sure she is tattling on the cat. My wife told the dog it's your own fault because she could have, with Papa but she didn't. Now the kitty get to come all with me.
If you follow my blog at all you will know that I have not posted much. My mouth pain and the rubbery quality to my right side of my face and tongue make it much more difficult to post. I am also having problems getting my photos from my phone into my PC. They used to automatically be added to my dropbox but now they don't for some reason. It seems like every time is a update to Windows all my apps work differently. Seems like every change makes it more difficult for me. Thank you again for reading this. I'm not sure how much longer I can keep posting and I will keep trying. God bless you.

The stages of Phil

Recently I watched the couple of videos on Amazon prime. In both there was someone who was considered "the good guy". In each there was a dark hero who needed to remain anonymous. In their execution of defending "right" they came in contact with a child. Their missions meant that they should remain anonymous but neither could bring themselves to hurt a child. Later on the children ^would draw a person in a scene and then an adult would ask "who is this?". That child would answer "that is the sad man". I am now confined to bed much more than I used to because of the pressure sore. I have a bit more time and think that is usually not good. I thought I would go through some of the stages I go through and other people have to deal with.
When I wake up I am "chipper Phil". I am a more or less pain free except for my trigeminal pain. Some days there is a lot of pain and some days there is none. It has been impossible to figure out why is it is so inconsistent. A banter with whoever is back here. Later on in the morning I started feeling lonelier and more pain come back. I have a wound on my calf that does not seem to heal and is getting more painful. I go from chipper Phil to the next stage which is "apathetic Phil". The home caregivers find me in this stage. My son comes around 1 PM to get me lunch and sometimes he put me back in bed if I have been up for a while. I don't really care about much of anything. I probably spend the most time in a day as "apathetic Phil". I think it is some of my defense because of my quadriplegic condition. I cannot say I have been lonely until I got the pressure sore. Now I feel pretty isolated. My bedroom is not set up for visitors so people just pop in the say hi. None of the three pets we have show me any affectio. Probably most of my day is spent in apathetic Phil mode. One problem with this is that when I read the Bible or listen to a sermon it feels like is not meant for me but somebody else. I still feel like I am transported back to the days when Jesus walked the earth. It just doesn't seem like I fit into it. Having an incurable, untreatable disease a feel like I don't fit into his stories and the epistles. I know I do but that is how I feel.
Apathetic Phil digresses into "sad Phil". This happens after dinner. I started to feel more pain and become very fatigued inside and out. MS fatigue is a strange thing and it is indescribable to those who do not have it. The best I can do as to say is like I am tired from the inside out. Sad Phil is not very pleasant to be around. Apathetic Phil can be distracting I visitors and I turned into "blabbering Phil" I talk and I cannot seem to stop. I want to listen to my visitor but away I go blabbering and blabbering. I visitors are very tolerant and I appreciate their care. So sad Phil feels pretty sorry for himself in any kind of harsh comments to him have a huge impact. Have stories about this when my son's fiancée came to visit over the holidays. She met "sad Phil" first. She handled it fantastically and just rubbed my arm and may have put her had on my shoulder. Her sympathetic heart won me over immediately and I already love her like a daughter.
There is sad Phil and "sadder Phil" you can imagine what that means. Last step is "severely depressed Phil" this Phil has a complete emotional meltdown was sobbing and crying out to God to let me come home. Spiritually I am ready and have been for years. Emotionally it goes up and down the chart depending on my mood. The only one who is seen this stage in my wife. Is usually close to bedtimeOr is this it is during getting ready for. So that is the usual progression and I usually end up as sad Phil each night. I am depressed Phil one or two times a month but usually end up as sad Phil cannot wait to go to bed. Tomorrow is another day and I start the progression allover again. So to be honest this is sort of secret and I feel odd sharing it. Is how each day goes and I want to be as transparent as possible and share the realities this disease. On thing makes me glad that is that I am a very rare case and few people with MS are as bad as I have gotten. I'm glad others do not get this bad. That is the typical day of Phil. I pretty much want to go home to be with the Lord but the bonds I have with my wife and children made me want to stay. I'm want to sign off now my voice is getting mushy and in my voice software can I guess what I want to put down if I say with a mush mouth. Take care dear reader.

Late but not forgotten

Happy new year reader. I realize over the last two days that I should mention someone else my memorial. Is is more of a couple in a single person and one is still alive. You were very special to me in my teenage years and I should mention the situation and how they helped me. As I've mentioned in the past I stepmother and I did not have a very good relationship. I never could please her and so I gave up trying. When I graduated my school my goal was to join the Coast Guard. At that time our Coast Guard is Australia's Navy. It was not considered a good duty and so I knew I would be able to go to Australia which I'd always dreamed about. I believe that I would get enough leave that I could visit Tasmania. This was an amazing opportunity and so I signed up but the recruiter and a sent me to Des Moines.1. Everyone was in a large room and they said going to mention a physical issue and if you have not heard of it you go to have it. I don't want anyone to raise their hand and asked me to describe the problem. He went through everything from scarlet fever and similar things. They also mentioned things that were not diseases. We quickly passed one at said "sleepwalking". I was a pretty regular sleepwalker than but never did anything extreme or leave the house others have told me about. So not thinking because I was young I just checked yes I sleepwalk.
I passed the physical and the recruiter met with me. He said I scored very high on their tests and I passed the physical except for one problem. I could not join the Coast Guard because I sleepwalk. I felt very stupid because I was young and never even thought about it. I could have put no without anyone having an issue. My dreams of Australia were shattered. He told me I could join the Army, Air Force or the Navy with a condition that I was not allowed on ship duty. I didn't want any of those things. I wanted to be on the water and go to Australia. I love being on water and without that I did not want to join. I came home unbelievably discouraged. My stepmother fired up my dad to think that I did it on purpose to avoid service. Because of her intervention not there with them would believe that I did not do it to avoid service and I wanted to go to Australia. I was brokenhearted and started looking for a job because they said I better get a job quickly because I could not stay at their house. I stepmother always fired up my dad against me and no amount of explaining would ever work. What she said was thI started looking for work and Amana Refigeration was always hiring and I went down there and was hired. I had a low-paying job at a golf course and had told the Pro when he hired me in the spring that I would not leave until the night golf was over. There was no overlap where I work both jobs for a week. What a killer week that was. Back to my story when I got home my parents house I told them I got a job at the American colonies and would start in three weeks. I started the normal third-degree and my stepmother is furious that I stayed in my night job at the golf course. He wanted me out then and got my dad all fired up about the subject. Told me that I should back my things and get out that day. I simply laughed at her because she was ridiculous. What was a couple extra weeks. I went to work at my night job and when I got home all of my things are thrown out my bedroom window on the lawn. She included an old suitcase to put my things in. It was pretty crazy. Load the next day I packed my things and put them in my car where I slept that night. The next day I started to look for a place to live was limited by my deposit amount until I started working the job at the appliance manufacturer. I found one low rent apartment complex. It was like a very small hotel room and had one bathroom. There was a twin bed and that barely fit. It was no kitchen was a counter with the sink. Some cabinets were included also. They were pretty beat up as if somebody bash them with the baseball bat. The same with some of the walls. Some of the other residents seemed a little scary but I cannot afford it until I started working at the better job. I told my best friend Mark and find a place to live and he came over to see it. He said "you are not staying here". He said I could live in their basement because his older brother moved out and there was space. His parents were awesome and they let me live in their basement. I had known them a few years and Mark's dad is a great guy. He was always stern with Mark and treated me the same one we did stupid things which was quite often. I would have to say I loved Mark's dad and over the years he was a great source of advice. Mark's mother is extremely kind and she was in charge of the house. She always fed me lunch before I went to work and she found my dirty clothes and wash them for me. Never got to know her but she always took care of me without even crossing paths with me. There are fantastic couple. His dad's name was Orlin. Mark's mom is so I wouldn't dad passed away a few years ago. I was still mobile I could drive my van and get out in my chair. I went to the service will honor him and all that he did for me when I was younger.e truth no matter how bizarre.
Mark's parents were my saviors and my stepmother that her craziest. I hope to have one on my father later on because it was my stepmother that drove the insanity that my sister and I had to deal with. I hope is that this blog will somehow become a record of the great people that stepped up to help me because I did not really have anything from my parents. As I would have to say "God bless Mark's parents and all the others who were large in my life". I apologize if I'm forgetting someone or something and blessed me along the way. Faith Bible church has helped us as a family and do I believe we have been going with close to 30 years. The preaching there has bless my soul. Not sure how much my family has grasped the teaching but it is there if and when they want it. I'm not sure how much of what blogging I can do. My speech is getting very difficult in my breathing is very raspy in the days. So I was a God bless you reader and I hope to blog when I can.