Minor health update

I hope to make this pretty short. I do tend to blather on when I start talking. I pressure sore has led me to spend much more time in bed is very little in my chair. Have found that less I spend in the chair the harder it is to get into it again. I think it is like riding a bike you have to get your butt used to the seat. It takes about an hour my rear to get used to the seat again. I find I spend from 2 to 6 hours in my chair but two to three is most common. I feel like a kind of a slug spending so much time in bed.
The other thing is my trigeminal pain. I'm trying to wean myself from medication and is been six months since the procedure with radiation. I finally got down to three doses a day. I went to weeks with no pain so I decided to go to three doses one day and two the next.. This works for a week and then started getting twinges. I tapped out that twinges and the next week the pain was pretty serious again. Now I'm back on four doses a day till the pain stops that I will go back down to three.
I'm convinced now at the medication definitely affects my vision. When I was down to three one day then to the next I vision was pretty good. Now it is out of focus and started to get both eyes looking at the same thing. I'm not sure if this is where I am stuck. Is another medication that neurologist that I can try. I was hoping to be off all of them and do got look forward to yet another doctor visit. I don't see the doctor who did the procedure till December. I am hoping and praying that I keep getting off of medication.

Jordyn you gotta love her

It seems like whatever I say bites me in the butt. Jordyn was really cuddly at night since last weekend. My wife's sister who is retired has been visiting once a week. Jordyn loves her visits. This week she has not visited because she has been updating up bathroom. I sent her a text yesterday telling her that I think Jordyn missed her and was pouting for a couple of days. Then I texted her that she has been super cuddly to me at night. One night she slept with her on my legs and her head on my stomach The rest of the week she always seemed to be in contact with me. I bragging her up every chance I got.
then yesterday things went south. I got up late and was in my chair in the living room while my wife was at the gym. Normally she would come over once in a while and and sniff my ankle bandages. I would scold her and she would leave. She might come back 15 to 20 minutes later that I would chase away by scolding. Last night was sort of a nightmare. She came over and started licking my ankle bandages and I kept scolding her (I can no longer yell) and she would ignore me. I scolded her that my voice ran out. I gave up thinking my wife will be home pretty soon. Was really a big deal and that she started pulling on the bandage with their teeth. When she did this for lower jaw would push on my wound underneath and it was pretty painful. I scolded, I pleaded, I called her names and nothing worked. I started calling and my son came over from work and put her in the kennel. I was pretty angry with her.
I was ready to start breaking her up on my blog. As you can see from the photo she seems really attached to me. Skip be such a sweetie and she can be a real stinker. She is so awfully cute most of the time. I just wish she reminded me a little better. Of course is too late for me to quit loving her. She has melted my heart I am very attached to her now. One step forward, two steps back. That seems to be the motto of my life.

Realistic ways out for me

Yesterday's post was from "sad Phil". Today I will post a more realistic view of things. As you know I have an incurable untreatable disease that progresses and is moving faster than normal. Realistically looking at the situation there are three ways for me to act in this body has become something of a prison.
One would be that I am miraculously healed. This could manifest itself in many different levels from complete restoration of my health to getting my right hand use back. Have little hope that the Lord will heal me in one of these levels. The Lord can see my heart and he knows that were I get my health back I would be faced with the same tendencies of temptation that this disease has as physically freed me from. I also think that if he were going to it would've been party passed by now. It is still a possibility but I do not think you will happen.
As I can way would be the Lord return for his own of which I am using my faith in the work of the Lord Jesus my God and Shepherd on the cross at Calvary. He took the punishment for my sin upon himself so that I would be free of the penalty. There will come a day that all believers will be taken up to be with the Lord forever. I've come to believe that this will not happen in my lifetime. For a number of reasons why and one is that I believe things will get much worse in general on earth in society as well as earthly problems. In Peter he says "he is long-suffering, not willing get any should perish but all come to repentance". He lingered over Israel many centuries giving them plenty of opportunities to turn back to the Lord. I do not discount this as a possibility because it the Bible also says that "now is the accepted time, now is the day of salvation". If you have not done so please dear one come to Lord while there is still time.
The third way is that this body passes into death and I will be with the Lord. I believe this is my most realistic hope to get beyond this disease. This can play out a number of ways a number which I fear and number of which I would view as a mercy. I read a biography of the great John Wesley and after a lifetime of serving the Lord, preaching the gospel, he climbed up to bed in the second story and the next morning he was found deceased with the most contented look on his face. Believe Lord rewarded him with a painless passing. Cannot say I served the Lord as of of many of the great saints who have passed before me but it would be a mercy to pass in my sleep with no traumatic events. I believe would be the easiest on my loved ones also. I dream of this book do not feel I deserve it. Lord could provide a number of ways in which I passed with the least trauma to my family. I pray for this. Last extreme is the long drawnout painful death which challenges all of us to honor my DNR. My heart is very to go but my body is still here. I fear the breaking bonds which I have of my loved ones but look forward to being with my Lord. I believe my loved ones feel similarly. There's such a wide range of possible medical situations is truly impossible to cover them all so that everyone feels confident there following my wishes. God bless my family and I hope they see my passing as a release from the difficulties and just keep seeming to mount. So I think this may end my very serious Phil posts. Can't say for certain because I forget from day to day what I've already posted. Again God bless you dear reader and thank you.

More of yesterday

Yesterday I posted some of my thoughts that included death. Since I have a increasingly progressing disease that has no cure for treatments I have realized that I have 3 to 4 ways for this to end. One way is by death. My wife says I have too much time on my hands to think about things and I would agree. My ability to and my life by suicide or tragic accident. The doctors have told me that my type of MS makes me a candidate to have my breathing become problematic and lead directly to my death. Of course this is very rare and what again I am very special. Since it is so uncommon and no one is able to predict what that will be. Months may be, years probably. I have a DNR in place because I do not want to be on a ventilator. I'm on a BiPAP machine help to breathe at night for comfort. Most people that are quadriplegics come to either pneumonia or an infection of some sort. I realize my breathing leaves me open to pneumonia and the sores I have that do not seem to heal leave be open to infection. I mentioned these because one of the values that I have picked up over the years is the idea of a "good death". I have always hoped I would have a good death but is not looking very likely. My idea of a good death is one that comes fairly quickly, causes minimum fuss or burden on others and is possibly at the end of a life well spent. I became a Christian when I was 25 and am now realizing that scriptures do not support this ideal. But I don't pray for much and I know many people pray for me. I pray that I would pass away soon and avoid societies rigidity in the area of physician Assistantance. It seems as if society requires that we go bankrupt before this is over. If I could check out on my own I would.
The following are not really things that I think will happen but sometimes what time on my hands I do daydream about them. I'm not sure if this is where I got the idea but the Gillian Flynn book "dark places" had a person in it that went around during the farm crisis to farmers were in danger of losing everything and mercy killed/murdered them. He found these people by word-of-mouth and prevented them from committing suicide. The book was about an odd situation where there was a fire the same night in one of the houses where you was doing his thing. I don't remember everything but they confuse everything for decades until that was caught and confessed to all the killings. So sometimes I think about someone that sneaks into our house when I'm here in bed by myself and help me along to the next world where I will be with Jesus. It is illegal for someone to assist me and I believe it is treated as murder. I would not want anyone I knew for a stranger to be accused of this last alone do prison time. These are things that forensically it would not be very hard to make it looks non-suspicious but I realize now that what I know of that subject is come entirely from TV and is probably not very realistic.
Now I look at what I fear will be a long lingering awful death. It breaks my heart to think that I loved ones will be drugs to this tragedy. Probably my biggest fear will come true that my family will be made destitute.
Leads into my next concept of merciful death provided by my Savior in honor of my prayers. I never prayed for my recovery from this disease and that will be part of my next post. So hopefully this last post I have on my fantasy departure. Next three will be actual realistic ways that I will get out of this disease of body. Again thank you for reading my blog and in the future after I exhaust the subject will try to retain simple posts about our animals, light health updates and maybe some Bible meditations.

Slightly morbid subject – read at your own risk.

I promised a while back if it is describing the mixture of values I have. After I graduated high school I would sad dove I use whatsoever other to stay out of trouble. I drank a fair amount and was usually obnoxious and I got drunk. My friends kept me out of trouble for the most part. During this time I had a little bit of values I picked up from my friend Mike was really into Indian stuff. I watch the movie "Little big Man" the main character Jack who from one life style to another, which ever way the wind blew him. I felt a kinship to Jack in this regard. I never got into drugs because one time I smoked hashish with my friend Mike and I realize it was either dive into that lifestyle or say out entirely, which is what I did. That life style seem to immersing and I would disappear into a drug world that had one end.
The most endearing character in the movie was the old Indian chief "old Lodge skins". When Jack was taken by the Indians and brought up as one is determination part of getting attention of the old chief. He became like a son to him and referred to him as my son. Jack referred him as grandfather. The bond between them and the old chief speaking English is all thing way endear them to me. As you know Dustin Hoffman is not a big man. The old chief tells him of a brave and past times that was not very big but had a very courageous heart. The old chief told Jack that he was like him and so he called him Little big Man. Probably my favorite scene of the movie old Lodge skins decided it was a good day to die. His idea was all throughout the movie and it was a reminder it have always felt the same way. None of us gets out of here alive. Old Lodge skins referred to their tribe as the "human beings" and viewed their values and is very understanding one and the old she was confused throughout the movie that the white man never seemed to understand this. After many decades old Lodge skins realized that this tribe would be "rubbed out" is white men never stop but it was never going to stop coming. It was after the Army came in and massacred one group of this tribe there were on the reservation promised them by the American government. The blood on America's hands is a whole different subject. In the last scene of the movie old Lodge skins said he did not want to live in a world without "human beings" and decided to climb up to an Indian burial ground and asked his son to go wThe two of them climbed slowly up to the spot where there was a funeral bier prepared. Old Lodge skins does a Indian dance with chants and when he is finished he tells little big man that he will lay down and die. He lays down slowly and is laying there for a while. Then starts to rain with very large drops in with the time of year we know the drops are called. There are large drops and after a few land on old Lodge skins face and he says to little big man am I still here? Little big Man says so patiently "yes grandfather". After more raindrops plopped down the old chief only rises and says I guess is not my day to die. They go back down the hill. Of course you couldn't love old Lodge skins anymore then you then.
So is actually the movie that gave me the idea that we should always be to die because that is the way of all men. I picked up other values they saw in western movies. One of those was that when a Indian became old poor in some way useless to the tribe you would go off by himself to die. I saw great wisdom in this and I find that our society is built differently. Many call Christian values and here's what I see is veryrather strange.
In my case have a very strange noncommon disease. Our health system and value system seem to be built on the idea that you have a disease will either get better or die. There is no physician assisted method of getting out of a chronic disease that may go years for terminal. This is the case I find myself in. One of the reasons lawmakers will not allow physician-assisted methods for people like me that they fear cases they cannot prevent misuse where an elderly person is euthanized so that their wealth can be passed on greedy relatives. So in my case is not an alternative and we must go through the torture of me and my loved ones until something happens to me like Pneumonia, infection or another type of medical problem. In my case I cannot realistically hope for a heart attack or some other sudden way of passing I can aneurysm or stroke. Have a strong heart and I used to have I blood pressure and felt that it had an aneurysm a weak spot in when my brain blood vessels it would've gone off by now. I'm now on a blood pressure medication that brings it down to a safe level. This will bring up my next post about where I've you are the 3 to 4 ways I have of getting out of this world. With the medical system is now we will go broke and news everything which is really much and I will leave behind you just to widow. Thoughts of this film me with great sorrow but there is nothing legal to do. I'm to debilitated do anything on my own that is not even on the table for consideration. I will try follow up later on this and after I'm done with this morbid train of thought will probably only post Bible subjects or animal stories. Thank you again forward to my blog dear one.ith him. Of course little big man said yes grandfather.

Weekly post – multiple subjects

I think this is the only post am making this week. It's been a little strange, this week. I've been plagued by voice problems, spent a lot of time away from my PC that I can use voice and doctor visits. I feel little rushed this week wanted to say anything to keep my blog going. Part of me is losing the desire to keep my blog going. I realize I am very compartmentalized and while part of me wants to keep the blog going other parts of me think what the point, I guess I am going downhill. Is becoming much more difficult to coordinate my voice, time with the PC and being home. It takes a lot out of me go to the doctor.
Went to the wound doctor Wednesday I got an unusual response from the doctor. I'm not sure how to place it into my odd MS factors. One of the issues with my MS is not considered terminal but I've been told in the last year that my diaphragm problems will be eventually. Now the wound doctor telling me that my skin is losing the ability to heal itself in my wounds don't appear to be getting better. In some ways I feel like I'm a walking dead man icon Green mile the movie. I don't feel like many closer to an and then I did a year ago but with this MS no one seems to know anything solid in my wife and I are left to figure it out on her own. Since I have having trouble cognitively this falls on her shoulders. Course she has no way of knowing or even guessing. It's always seem to do is guess.
I'm getting a note Jordyn better. I'm not sure this is a good thing. Have learned that she has a bit of a poser. When there is someone here she seems like a sweetheart to me. As is I'm here by myself with her I become chopped liver. She ignored me entirely as to the cats. She is really really good at being a real sweetheart when there is an audience. She really has the looking cute thing down to an art. Lately she has been stopping all over me there's someone here that she wants to take her outside. We call it, galloting me. Used to not mind it much but now she's gone more extreme and she makes him mad. But then she is super super cute it's hard to say mad. Not much else new to say about the critters.
Having more problems with my computer and smile mouse. It works really good in my living room one in the distance between my face and the computer is bigger. Is this on the edge of what I can read though. My bedroom computer is much closer my face. This makes it really hard to control the mouse when clicking to select something. Often the cursor jumps and clicks the wrong thing. Sometimes it clicks where were want and other times not. Using the virtual keyboard is quite challenging. One keyboard is too big and takes up too much of the screen and the other virtual keyboard is too small. I have not found a way of making in between one. This wears me out because many of the things I want to type in my voice software will not do it correctly. My only recourse is to type it in with the virtual keyboard. Often this means the cursor jobs around the screen especially if I am having rattling breath. This one of the reasons I think maybe I am close to the end of my blog because it just wears me out.
Well dear reader thank you for spending your time following me and God bless you all.

MS progression – some feel is like a punch in the gut.

I read an article today on a MS Facebook site. The man was talking about how it felt when he went to his neurologist and was told that his disease is progressing and he has new lesions. He described how it felt like a punch in the gut. He is only 31 and has relapsing remitting type. Unlike mine which I expect progress because it is that type (and is somewhat uncommon and the speed and debilitation of my progression makes it very rare) is type you would not expect a fast progression. It is only 31 and seems like he is unable to work though that was not real clear in the article. He also had discussed it with others and their comments on his site that they felt the same way. A punch in the gut. When I was first diagnosed my doctor said that I had a good prognosis for the type I had in the age I was. He thought I would be able to still be walking by the time I retired. This did not turn out to be true. Progression was unbelievably fast. Every six months or so I had to find a new way to adapt some physical loss. I walk with a cane as long as possible. A manual wheelchair did not work because of the weakness in my hands. Using a walker work for a while but then the weakness in my arms meant that wouldn't work anymore man to start thinking about a power chair. This is a whole different level. Ramps round the house and figuring out a way to all the chair. Like I said a whole different level physically and financially. I could no longer go upstairs to our bedroom. I started sleeping on a futon bed in what used to be our master bedroom. We really wasn't that big so I slept in there alone with my wonderful cat, Macy. She kept the company and I think this is about a year before we decided to find a ranch that can be modified fairly easy for me. I again could sleep with my wife. Is so comforting to me to her breathing when I wake up in the middle of the night. Somehow I know everything is all right.
So I have digressed a lot on the subject that started with. You do that a lot more lately. I used to read our children Winnie the Pooh books. We love Tigger and Winnie the Pooh is very sweet especially when you described himself as a bear of very little brain. I feel like that is what I am, as a man with very little brain. I know there cognitive issues with MS and that my brain is actually shrinking. Sometimes I feel like the witch in Wizard of Oz and gets wet and yells about it mouthing her. So back to my original is subject. Used to feel like physical losses with MS were like a punch of the gut. Have been to so many that now they just break my heart little more. I read about all these people who have diseases and they are described as courageous in the obituaries and warriors while they are alive fighting their particular disease. I'm no longer either. In my case and MS has won. I am a full quadriplegic and my voice and breathing are affected by weakness in my diaphragm. I'm trying the drug Ocrevus which is infusions every six months. It may have slowed the disease a little but if it works it will be too little too late of my case. I really needed something five years ago. I will try one more year of it and if I don't see something tangible I won't continue it. So I'm so glad that there are people who still have good attitudes, are optimistic and do everything he can to keep the disease at bay. God bless them and their big hearts. Well I'm going to sign off now because my mouth is getting wacky and I'm having trouble forming words correctly. Thank you again for reading my blog.