First National Box Day

I'm sure I'm probably late for national cat day. Story of my life, they late and a dollar short. So I'm going to rename this national box day and hope it catches on. My wife's retired sister stops over once a week to break the monotony. Today she noticed the cats were very into the boxes. We were going to get rid of them but the cats use them to play in and so it is hard take that away. We thought about getting a cat condo but we figured they would not use it and like the boxes instead. Kind of like kids at Christmas and end up playing in the boxes rather than the toys. She captured them in rare situations that went together. Slim sat on one top of the box looking out the window. She captured another rare situation where Jordyn was examining the cats rather than chasing them. Sort of an odd day. So here you go for the first and probably only "National Box Day".

My mixed philosophies part one

I promised a post about how my value system retains of things from when I was young. When I was in my early 20s I really didn't have much of a value system and drank a lot. My friend and I had motorcycles and we ripped around Cedar Rapids. I had a beard and was kind of a bad boy but never really got into much trouble. I'm not sure what my, wife who was my girlfriend back then, saw in me, but she had common sense and I didn't have much. My affection for her kept me from being too bad. I found that what her dad thought of me mattered a lot, probably because I had no relationship with my dad. He put all his effort into my stepmother, stepsister and his new son. I kind of felt like I was the odd man out and so be it. My best friend from the neighborhood when I was in junior high was really wild. He ended up being out of control to his parent's and they turned him over to the state. He was in foster care after that which is a whole other story. There is sure a big difference in foster parents. My friend Mike was really into Indian lore and values. He used to share these with me and we did some things like canoeing when there was a thin sheet of ice that we had to break through and camping in winter. That's what the Indians did so that's what Mike wanted to do. I thought a lot of the Indians' values like the great Spirit were a lot of bunk but I enjoyed some of the activities with Mike. One summer day after I could drive went to a nearby river and covered ourselves in mud climbed up and some trees and hung over the river and would jump off. Occasionally we did it when canoers went by. Most of them thought it was pretty funny. Of course I have digressed from my subject. This is probably why I am socially awkward and tried to avoid being around people I don't know. I either don't start talking or I start talking and and up rambling.
I'm not sure when but I saw the movie "Little Big Man". The story starts out with with his family heading west in a wagon train back in the pioneer days. They are attacked by Indians and everyone but he and his sister were killed. They were taken by the Indians. Why this resonates with me is because the main character, Jack, leads many different types of lives as he goes through on thing after another. He is brought up as an Indian and is picked on and humiliated by the boys. Eventually he gets angry enough that he punches his main tormentor in the nose. In this tribe that was never done and this tormentor was humiliated. Jack became one of the Indians and learned all of the Indian ways of this particular tribe. When he became old enough he went on a war party  and distinguished himself. He became the adopted son/grandson the main chief "Old Lodge Skins". The old chief was very wise and it was the start of the times when the Indians were being pushed out of their lifestyle by the whites. In this movie Old Lodge Skins imparted is philosophies to Jack who had been renamed Little Big Man based on a previous warriors name that the old chief told about. Is probably the wisdom of the chief they gave me some of my philosophies in life. One of them was that you always assume the best about things and of the people. This made me very naïve as I was also very gullible and naïve probably from bouncing around and moving a lot as I was growing up. I see I will have to continue this later as I am running out of speech energy. I have to suck my breath in and hold it in until my voice software is done writing the last thing. This wears out my chest muscles. I hope to continue this later and it will take me remembering where I left off. My memory is gotten extremely bad due to the combination of getting old and the double whammy of having MS affecting my brain as it progresses. Thank you again for reading my blog. You really enjoy posting about our pets. The other posts are more like a job that keeps me from just vegging out all day. Also it shared a little bit of my personality.

Hawkeye dog

Here is Jordyn with her Iowa kerchief on. Somehow she gets cuter and cuter and bratier and bratier. Am starting to think there is some connection between the two. She still knows how to schmooze Papa. Joe longer gets up at the crack of dawn on weekend mornings but has learned to sleep in a little bit. She will a with her head between my wife and my shoulders. I will tell her "shhh it is sleepy time". She either goes back to sleep are goes out in the other room looking for the kitties to chase. As long as she lets us sleep either works for me. The only thing she does that if she catches the kitties is to hold them down and sniff them in their bellies. For some reason they absolutely hate this. Probably the getting held down part. Lacy often teases her and will keep walking near her hoping she will get chased. I don't often get photos to add so this is kind of a treat. When I am here by myself not know the animals cuddle with me. When someone else's there Jordyn puts on a show and will put her head on me especially if they tell her to get off the bed. She knows how to play the sweetheart.

Problems posting.

I had hoped to post today but between rattley breathing voice program not doing very good.

Computer issues settled

I've got my computer swapped the one with voice recognition that works is my bedroom PC. I'm thinking that my future includes spending less time in my wheelchair even if and when the pressure sore has healed. Have known people who have had pressure sores that would not heal for years. My doctor gave me some hope that this one would heal but even if it does I don't think I will be able to spend as much time in my chair as I used to. I think this means that my main computer will be in the bedroom. I was going to replace the one in the living room with one that has a microphone card that works but now I'm rethinking that. I may have to table the decision until next year.
I was able to purchase a new set of earbuds that ever very small earbud portion so that is less irritating to my ear. It also has a very small wire part that goes behind my ear. There is so comfortable I cannot believe the difference. For them all day yesterday and all last night and I forgot they were even in. I use these so that I can do things on my PC like watching prime videos and TV shows while my wife is sleeping. She can also come in and watch a TV show before she goes asleep and I can still watch something else.
I have a headset with a microphone. I tried to get it set up to work and found the speaker in the computer bezel works better. They were very comparable either so I don't think it's a big loss. So I hope to keep posting fairly often. But now I'm ready to go as far as the computer situation is. An issue I have though is that I purchased a Dell two in one computer with a 10 inch screen. I chose it because it was the smallest screen size that still gave me flexibility with its other positions allowed. So far I haven't used those. I tried making a tent type configuration but that turned the screen upside down. Some of the applications won't work upside down so that shot that down. One issue with this two and one is that it is somewhat slow and really needs more RAM to run the voice software better. My son Dan is looking into replacements. I can probably live with a 11 inch screen hope would and want to go much bigger. I think of normal laptop would probably be fine. One advantage of the two and one is that it is also a touchscreen which helps when other people are helping me do things. I don't know if laptops are touchscreens but I suppose the good be learned if needed. Well I hope to post more in the future. It's funny because I think of things suppose about on Saturday and Sunday one Monday rolls around I have forgotten them. I should send myself an email with a reminder.

Health update post 2

Two other areas I should mention is the decrease in my trigeminal medication I'm trying to wean myself off of. We also had a frank discussion with the staff at wound clinic about difficulties functioning it is I get worse I still need to be alone as my caregiver must work for insurance reasons as well as income. I have gone from 10 tablets (200 mg) a day down to three now. I've tried getting down to three in the past being too aggressive thinking that my radiology treatment is advancing but I have to wait. Each time I've gone to three pain came back like gangbusters. I've been on three which is one every eight hours. Since Monday and so far the pain has not come back. I hope this holds out. So many times since I have been diagnosed with MS that I said "at least this or that still works" find that within a month or so that is gone and I have to adapt.
The other area discuss that we were able to have a frank discussion with the nursing staff and the doctor at the wound clinic pertaining to how difficult things are getting for me and I wish I was out of this body. They were very helpful one of the nurses used to be a palative care nurse and new how to maneuver in the system as well as having contact people she knew. Earlier this week we met with a nurse who work in that field for the hospital we use. We were able to get on file my medical wishes and that goes through their entire system. She was very helpful and will meet with a social worker that she put us in contact with probably next week. So I'm getting pretty worn out and will sign off. Again God bless you dear reader. PS, I didn't do myself any favors this morning. I had my wife positioned me before she left and I am off to one side and this is messing up my smile mouse. The cursor is jumping allover and clicks where I don't want to. Also won't click where I wanted to. It is difficult fighting the voice software as well as the cursor jumping over. Once again take care and God bless.

Health update – post number one

I'm having trouble finding at my living room computer. I have mentioned in past posts that I have a PC in the bedroom but the soundcard which includes any microphone functions no longer works. I only have voice recognition software on the computer living room. I'm supposed to stay out of the chair most of the time and so I don't have access. Of course I made this much longer than it should have taken because I was mentioned here and overthink everything.
The point I'm trying to get to is that is getting very hard for me to figure out my schedule with the limitations of the chair and spending more of my day in bed. I suppose I should've switched the computers a few weeks ago but I don't know how long it will take to heal. I still have my old mentality from decades of just splashing some alcohol on my wound throwing a bandage on it. It is in my wounds which I got quite often because I have always been a little klutzy. So I love the same thing for these I'm finding out that everything different now. I believe it because my circulation is very poor because I cannot move. I Used to be able to have my wounds heal in a couple weeks. I find it so difficult to get usWe went to the wound clinic yesterday. The doctor said pressure sore was getting better and the weird sore on my leg they got because I fell sleep while I had a motorized massager under my calf. I feel pretty stupid about it because I thought more than once I was getting sleepy and I to call my wife in to turn it off. But I convinced myself I would only be asleep for a little bit. I was the stupid part. I woke up an hour and a half later. The wound just kept getting bigger and bigger and now is needing redressed every day. Couple weeks ago the doctor use a scalpel to cut the dead tissue out of both wounds. It felt like somebody was pitching me with their fingernails. She asked if it hurt and I said not real bad because I was pretty sure if I said her she would give me novocaine shots. Experience has taught me that they overcame shots often hurt worse. I have found that I can tolerate quite a bit of pain if I know it will end soon. Lingering pain is what I find difficult to bear.
I asked the doctor in a blunt of matter because I did not want sugarcoated answer. I asked if there was any hope and either wound was eventually close up. I have a friend who is in a wheelchair from a spinal accident and this was unique him but he had a wound on his tailbone and bothered him for years. Know the situation is different but I have been having doubts that my pressure sore wou golf ld ever heal I think I got a straight answer that it was heading in the right direction. She would not commit to a timeframe I was encouraged that it was a little bit better. I again I have to thank my wife for redressing both wouns each night. Good golly Miss Molly I sure am a lot of trouble.
eSo long story yields the point that yesterday's visit was on the positive side. The news was good but not great but I believe I got a straight answer. I know some doctors want to sugarcoat things but that doesn't work with me. I think to literally and need a blunt answer. I have other news about my health but this post getting so long that I think I will make a second post if I have enough breath. Thank you for being my blog appreciate you all.

Short post about Jordyn

Don't have time for a long post I will have a short one about Jordyn. Sometimes she is stranger the cats. When she is a with me she mostly sleeps. Around 5 o'clock she expected my wife home if she is not a already home. At 5 o'clock gets on the footstool and looks out West window. She gets anxious sometimes he barks and if my wife will hear her. She also seemed to know what time it is for my son to let her out at one 45. This seems like she can tell time but I don't know how.
There have been a few times now where she gets on the footstool earlier and barks couple of times. Within a minute my wife turned the corner onto our street. I don't know how she does it. This seemed impossible for her to know my wife's SUV is turning into our neighborhood. She is definitely my wife's dog when she is home. She wants all of my wife's attention and she misbehaves a lot. When my wife sets on the couch she climbs all her. For some reason she thinks she is a lapdog. At night sometimes Jordyn puts her head on me. I think sometimes she chooses me because I don't move my wife turns over often. I am losing my voice I will sign now. Again God bless you dear reader.

Some good

Occasionally a few things, minor, should be mentioned but I tend to forget them. I have been able to lower the use of my trigeminal pain medication and have been taking four one day
and three the next. I have noticed my eyesight is better in the days with three. I'm really scared to go to three every day because I've tried that twice and the pain came back. I can tolerate a little bit of pain knowing that it should get better but those other times it was pretty bad. I noticed that  the numbness around my I has gotten further along in so I expect my jaw to follow suit. I used to try to educate myself with the Internet and self diagnosed things but I've stopped that a couple years ago. I realize I'm not a very good doctor.
My phlegm amount is decreased. Would say now that is caused by allergies. I know I'm allergic to cottonwood when they are dropping their seeds. I suspect have other allergies at the recent rains and cool weather have helped with. Again, who knows. I could end up being allergic to house dust. If I was working I would probably go to an allergy doctor. I am pretty sick of doctors so I wouldn't now.
One funny thing I think share is that I asked about wound doctor if I was a candidate for a bottom transplant and they said no one does that. I told them they could be first in the world. I told them as long as those about same size I didn't care what color was. Well I have to sign off now to take care dear reader and may God bless you.

My blog's purpose

Thank you all for your cares and prayers. I'm not sure if I have made this clear or not I would just like to say a couple things. One, the purpose of my blog does not include sympathy. But Is my way of keeping people care about me up to date because I don't speak well enough to tell them individually. Two, as far as I know the MS I have is not only rare but my case has advanced faster and further than anyone I have ever read about or that my neurologist expected. Three, my blog I hope to educate a little and entertain a little with the pet stories. Four, I still hope my sense of humor shows through in my wife makes me laugh every night putting me to bed. Five, I hope this is the last one. If I were to choose someone to get this disease out of all the people I know and care about I would all of my hand and say choose me. I would not wish this on anyone. Thank you again for caring but do not feel sorry for me. My wife perhaps but not me.

Sort of a health update (part one)

I went to the wound clinic yesterday. The spread of the fungus under my skin has been arrested but the actual pressure sore has gotten worse. The doctor is a very soft spoken lady and shared one insight into my future with these type of sores. There was a nurse there that used to be a pallative care nurse. She told us that each doctor could only focus on on their particular specialty. There were going to contact my family doctor (primary care) and suggests some things. The wound specialist said that due to my poor circulation and always needing to be either in the chair or laying on my back in bed, this would may not heal and pressure sores were going to be a problem going forward. I found this somewhat disheartening. I never imagined this particular problem in those terms. Her and the nurse mentioned that circulation problems would need a cardiac doctor which I have not seen yet and don't know if I ever will. Right now my circulation problems are wounds that don't heal well, my feet swelling some when I'm in my chair and cold hands and arms even if it is warm. They don't know why but my legs and ankles do not swell up. Compression socks do not have my feet only my ankles and legs. I tried them years ago and they really didn't do anything for my feet.
So to sum up some things my doctors have told me over the last couple years that are disheartening are these: my neurologist in answer to a question I had about how MS people die have MS (a been told for years that MS is not fatal) he said that the only way people die directly from MS is due to a weakened diaphragm so that one is not able to breathe. He said this afflicts me and I'm a candidate to do that type of MS I have. I asked the question in my wife was pretty upset with me for asking. That was early this year. The pulmonologist (of whom we were very disappointed with) said that my MS will probably need me to stop breathing and when I quit breathing I would die. He volunteered this and when I asked "soon" somewhat eagerly he started mumbling and babbling that with MS could be years and no one could tell. The asked if I had a DNR and I said yes. He asked if I would ever want to be on a ventilator and I said absolutely not. That was earlier this year also. I don't remember which doctor that due to my breathing week this I would probably be subject to the risk of pneumonia. Now the wound doctor tells me I will have problems with pressure sores more or less with the rest of my life. That is four dings out of four. That brings up bit of sadness that I will share later. My voice and software are acting up and I will have to sign off. I hope I'll be able to post some of my life philosophies that I got when I was young and so hold onto while being a Christian holding those values. Right or wrong it will be what I have.

Pet stories/update

I think I am due for your pet update. This is that no chronological order. Yesterday I saw Lacey sleeping on one in take me end of the couch on my left. The dog was called up against the armrest on the same couch. Early in the morning I'm not able to turn my head very much and my peripheral vision is a unable to focus because my glasses on the face forward.. The cats had her back to me and her head tucked in. He thought how nice I was and hope they would soon be cuddling up with each other. When Matt got here he went over to the dog and I was turning my head to tell him how nice it was that they were getting along. When I turned it out of the corner of my right I I saw Lacey in the cat bed. I took a better look and realized what I thought was the cat was really only a pillow and a light-colored dog toy. I thought this was funny.
I don't know if it's that bad weather we've been having but Jordan has been sleeping on the bed in the mornings after my wife leaves. Is nice to wake up to a little company. This morning she even put her had on my leg. For some reason this spake a lot of difference to me. As I have said she is either the Swihart or a stinker. Sunday she kept looking my pants because underneath there is a wound from falling asleep with a massager under my calf. The massager did not have a safety timer so I bought one and have not used it yet waiting for it to heal. She wore me out done her to leave me alone and by the end of the day I was pretty annoyed. Sweetheart or stinker.
 Some days Lacey or Slim just walks by Jordan and no chasing goes on. Other times the puppy comes out for and it's full on row. We keep telling Jordan to be gentle with the kitties and they will like her but she has a lot of puppy. She still has an agreement with Lacey when she gets in the cat bed she is safe. Those two are pretty entertaining. We used to collect boxes for my brother-in-law sold a lot of items on eBay. He doesn't do that much lately but my wife left a pile of boxes in the entry room and the male cat who is all gra and named Slim love to play in them.
I probably have more stories but I don't remember them now. My voice software is also flaking out. It would not work a Y on the end of gray. Then instead of correcting things changes the text so tiny they cannot be seen but messes up future dictations. I'm sure my weak voice contributes to this and also I have the headset laying on the computer because if I try to where it ends up getting out of position and I cannot put in the right place. I will sign off now and thank you again for reading my blog. I would love nothing more than one of the three pets become a cudedler. Take care my friend and made love of God bless your life.

Update

I read and hear about people with health problems that are fighters and warriors. I'm very happy that works for them and they are warriors. My history of primary progressive has taught me that I am neither. I spent many years trying to outwit, exercise and having a fighter attitude. I found in my case none of that mattered. MS is just Plugging along and has won. I have found that nothing I have done as mattered. I just have to keep adapting to the changes. Not too long ago I became a full quadriplegic. Can't even move my fingers. I'm now a picture of someone that has given up. I don't want anyone to have in my description alive or dead I have fought this disease. I now have to have everything done for me. My loving wife keeps having more and more to do for me. It breaks my heart. I just go where she says and try to do what she says. Have great difficulty communicating and I confused her because it trying to make conversation and telling her I have a problem that needs her attention come out the same. The solution is that I quit trying to make conversation. Is been very difficult because I have always enjoI now have a pressure sore that I've gotten mostly from the my chair and since I cannot move in bed I guess it's always got some pressure on it. I'm supposed to be turned on my side and switch the other side every half hour or so. This is impossible for us to do. There is only one side I can lay on and I can only indoor one half hour because of my neck pain. I cannot lay on my left side because I would fall off of the bed. We do the best we can but it does not seem to be improving. Sad to say but this is just one more thing for my wife to do.
I would say I have pretty much given up. I suppose if it happened earlier it would've probably meant suicide. That is out of the question now and no one worries about it because I cannot do anything. I really want to help my wife but that is no longer possible. Some days my eyesight is wacky and some days fairly good. I am hoping it is from the medication I'm trying to get off of and not MS. I pray to be let out of the body and be home with the Lord. So far this not happen. I'm told odd to talk about this because it scares people.
Strangely, Sundays seem the worst. I think it is because the commercials that they show with football games. The show people my age retired and doing fun things that I can no longer do. For some reason kayaking it has now become very popular and is in many commercials. This makes me miss kayaking more than I used to. Between the car commercials and investment/retirement commercials I feel like a moron because I am not prepared for my disease. I know would have been impossible to prepare for this but is one commercial after another.. Commercials make you feel like I should've been able to purchase $40,000 or more vehicles. Everybody in the commercials lives in a huge expensive houses. I like pro football but I'm thinking about not watching because of these commercials. I'm not sure what else to do. Usually Sunday football gives me a break from reading. I like reading but I need a break with something else now and then.
I am starting to lose my breath so I will need to sign off now. Thank you for reading my blog and all your thoughts and prayers. God bless you dear reader.