Immunizations – the latest info

Tuesday afternoon my wife took me in for the immunizations I needed before I can start the new MS drug. I found out which 5 they were and I guess it makes sense now. Before I was confused. They are for tetanus, meningitis, shingles, pneumonia and hepatitis B. The nurse at the doctors office said that I could start my MS drug in 6 weeks. But my wife thinks the neurologist office said I had to wait 6 weeks after a booster I will get in 4 weeks for hepatitis B. I guess we'll find out soon. It will either be early August or the middle of October. Since the drug is new what is needed is not really apparent and needs some research.
For a while I was annoyed with myself for not getting a shingles vaccine or pneumonia vaccine years ago. Then I was annoyed because I thought my childhood immunizations ran out. Then I find out one is for meningitis and another for hepatitis B. I would never have imagined asking for either of those so I guess I couldn't have done anything to aid the situation.
It's funny how when I think I added to or cause a problem I get angry with myself. I often take it out on others. If it is something caused outside my control I am more accepting of it. I guess in some respects this is not the best attitude I could have. It was a guy used to work with about 35 years ago said often "if wasn't for my bad attitude I wouldn't have any attitude at all". It was always funny.

Nice weather

I haven't posted yet this week. Weather's been fantastic. No AC since the weekend. Today is supposed to be over 80 and humid so I don't know if I'll make it to the weekend. It's supposed to be below 80 until 4th of July so I'm hoping to go without AC  until then.
I really appreciate having AC when it's hot but I might prefer the fresh air and the breeze it comes to our house. One downside of open windows is that Atlas hears a lot more stuff and is either on high alert or he is actually barking. I don't scold him for barking except for when he barks at things that he shouldn't bark at. I don't think he should bark at the mail woman. Whenever he barks he knows and then I tell him to get off the couch still whenever he barks he gets off the couch himself and comes over by me. It's like he puts himself in a timeout! It's pretty funny.
Why had my immunizations yesterday and will post on those tomorrow probably. The weather's been so nice I wanted to mention how comfortable it is. I've also noticed that since I can't move my hands or arms very much the heat doesn't have anything it can take from me. It used to be that when I got overheated I couldn't use my arm to drive my chair. Now I can't do it anyway so the heat just makes me miserable.

Clarification – oops

In an earlier post I mixed up 2 different verses from the Bible and paraphrased them. Later I realized I should have split them up. While both are true and what I posted is true they are really 2 separate Bible books and verses.

The 1st part of what I quoted is from Paul's letter number 2 to Timothy verse 1:12. The apostle Paul is making it clear to Timothy that is not what we believe but "whom we believe". It is a personal attachment between Christ and the believer that saves. Knowing things in your head is not enough as is a personal connection.

The 2nd verse would be in Hebrews 7:25. It is speaking of Christ as our high priest and representative in the heavens. Because of this he is able to perform as our high priest and save.

New MS drug – vaccinations

Well like everything, it seems there is good news and bad news. The good news is I get my immunizations Tuesday. There will be 5, 3 of which I know what they are. One is for hepatitis, one is for shingles and one is for pneumonia. The other 2 must be for immunizations I got as a child but no longer are working. I guess that's a good news.
The bad news is that one of these immunizations requires a booster in 4 weeks. Since I have to wait 6 weeks after the last immunization. That puts the new MS drug out at least 10 weeks from Tuesday. Until I had MS I did not realize how impatient I was. I hated waiting for anything and if I had to wait I would just do things myself, like projects around the house. That is why did most of them myself is because "why wait for someone who will do it no better than I could". I guess MS teaches me patience, but like the grumpy old man said "I don't like it one bit".

Atlas – teaching the wrong thing on accident

When our 1st son was preschool age we lived out on an acreage. There are very few outdoor lights and when it got dark we always told him to come in. He would've played outside 24/7 if he could. Then one night I forgot  go get it and it was after dark. Dan, our 1st son, ran over and grabbed my leg and said emphatically "don't go out there it's dark". I realized then that we had taught him that it was dangerous to go out after dark. We laughed and told him why we asked him to come in at dark.

Now we are watching Atlas and have watched him since he was a puppy and Tom brought him home. When he was here he would always bark at anything that pulled into our driveway no matter who it was except he wouldn't ever bark at his owner Tom. To combat this we would emphatically tell him "it's Tommy, Tommy's home"! Somehow we got the idea that whenever I said the word Tommy he was supposed to bark. He still barks whenever I try to say that. Sometimes is funny and sometimes I feel silly that I taught him the wrong thing.

Now he is here for a year while Tom is deployed. We are home together during the day and I noticed he rarely barks at much anymore. I started praising him went somebody would come by like the mail person. I would tell him he was a good boy and would say it multiple times. Then yesterday I thought I should tell him he's a good boy even if no one's going by. When I said it to him he immediately jumped up on high alert and looked out the windows to see who was walking by that he was missing. I guess I've taught him that when he's a good boy it's because somebody's going by and he is missing them to bark at. I would say silly dog and silly Phil!

Sermon on the Mount

A while ago someone posted a photo on Facebook that showed a passage from the Old Testament and highlighted the portion that talked about the Hebrews owning slaves. That post made me think a lot and maybe I will be able to streamline my thinking by posting about it.

Historically, slavery has been part of this world until recently when a war was fought over it and slaves in the United States and other Western countries got their freedom. It was a religious movement that started the US down the path of outlawing slavery. Make no mistake I think this is the good in a natural state of things. I'm not sure if everybody realizes but in modern times there are still slaves. Of course there not called slaves but I've read there are up to 30 million people, mostly young women, who are held captive as slaves. Sometimes their families are threatened to keep them from running away. This is a horrible perversion but but slavery finds its way into society whenever it can. I feel this is an undeniable historical fact. Some of the things I've read about people crossing our border illegally and fall into being trapped into slavery turned my stomach.

One thing about the Old Testament portion that was posted is that it ignores the fact that Hebrews were held as slaves by the Egyptians for 400 years before Moses led them out. At that time in societies, from Egyptian to Syrian to Babylonian to Persian, slaves could be killed at any time a master chose. This instruction in the Old Testament actually put the Hebrews under a stricter law than was normal.

One of the things the Facebook post mentioned was that Bible believers needed to shut up about moral things because of these verses. As a Christian I feel the need to point out that the Old Testament is not currently applicable. The Christian is called to a much higher standard.

I have been listening to a series of sermons from my home church that deal with Jesus' teaching that is called "the sermon on the mount". It can be found in Matthew chapters 5, 6 and 7. If you read it, you will notice many times Jesus says "you have heard it said…" When avoids being an eye for an eye. And then he says "but I say I to you…". He is pointing out the true meaning of what the Hebrews have followed and twisted into an extensive set of rules. One of the verses I find most profound is Matthew chapter 7 verse 12 "Therefore all things whatsoever ye would that men should do to you, do ye even so to them: for this is the law and the prophets".

To me this verse is very profound and supported by other Scripture verses that you can look up yourself, I think. If men were to follow this simple statement the entire law of Moses would've been summed up in these few words. Another place that Hebrews are told that God has dealt with them "because of the hardness of their hearts". They had all these roles but the simple fact of the law and the prophets was that you should treat others as you would have them treat you. Where is slavery in these verses – it is turned on its head. So many other laws and rules made to control a disobedient and hardhearted generation would be turned on their heads also.

The sermon on the mount profoundly showed how different Christ's attitude was to the people who professed to represent him. This is true today that that standard is very difficult to live up to but it is the Christians' calling.

Donald Trump visits Iowa

I don't really like to weigh in on political things on my blog. There are so many on Facebook, it's a little crazy. The ones that bother me the most are when people post a video of something that was on the news. Guess what, people who have computers also have TVs and can watch them if they want. Seems silly to post it on Facebook.
I saw a number of copies of the same Donald Trump visit to Iowa. In the background before he came in there were a number of women who had signs that said "Women for Trump". The ones the TV showed were on the attractive side.
What bothers me is that these attractive women for Trump know he was quoted as saying that since he was a celebrity he could "grab them by the P….". My big problem with this as it seemed to support many molesters and rapists attitudes that "she said no but she really wanted it". It's sad to think these women would support a man with a privileged molester attitude and be proud enough to publish it. This seemed pretty confusing to me but Donald Trump seems to be made of Teflon.
For the record I consider myself neither a Democrat, liberal, Republican, or conservative. I have registered as an independent but if I had to say I lean one way or the other I would have to say I find moderate Republicans are the ones that I find the most in common with.

Dreams – weird and vivid

I have always had vivid dreams, but as my MS has progressed they've become even more vivid. I never have nightmares, and occasionally I have what I would call bad dream, but most of them are what I would call interesting and or entertaining. One thing I find unusual is I am hardly ever disabled in my dreams. Occasionally in a dream I may have trouble walking but that is as far as it goes. Since I am fully functional in my dreams mobility wise I find it hard to wake up and give up that mobility.
Lately my most common type of dream is that I am golfing with my sons who golf. The golf courses in my dreams are often very bizarre. The last one that I had there was a long par 3 that I drove perfectly with the 3 iron. The next few holes were like putting courses. The weirdest one was that you had to hit the ball about 10 feet into a Dixie cup posted on top of a stem. If you missed off the tee it was pretty much impossible to get the ball up into the Dixie cup. I am getting angry in that one and leaving the course.
There are times when I try to remember my dream but I can't. Some of the themes the last few weeks were very diverse. I remember one that had layered Jell-O. This morning I had a very lengthy one where my nephew had gone to Europe to the "old country" to find a wife and bring her home. When they arrived we found out they are enemies and follow them and we were having a shoot out with them.. In this dream I was very frustrated because I could not find any clothes to wear for the actual ceremony. I ended up wearing a pair of purple pants.
I also dream last night that I was harvesting corn for a friend with a horse-drawn combine type implement. He gave me a lot of money for every bag of corn we got for them.
There are many that I find entertaining but don't remember later on that day what they were. I remember in the morning but by the time the afternoon comes they are gone. I think they have been made more vivid because I take the drug gabapentin for the neuralgia I have in my feet. I don't think any of my other medications would do this because gabapentin is the one I take before bed and then again when my wife gives me pills before she goes to work. I fall asleep again after that until she gets me up around 930.
Well I don't have any real purpose in this post other than to just communicate something odd but interesting. Some dreams I have are similar to books I'm reading but have some bizarre twists that make it not describable when I wake. Again I find these entertaining!
One of my sons finds my dream descriptions interesting so that is one of the reasons I am posting this. It is now afternoon and I'm still wondering where on earth I would've gotten a pair of purple pants. I also wonder why on earth I would try to put them on, what an ugly color to wear.
One of the strangest series of dreams is that I was a leader of a Bible study. The dream was not strange, what is strange is that I would wake myself up because I can hear myself talking and explaining in these things out loud. I don't think the dog and cat really care.

Macy versus Atlas – a funny story

Had a great Father's Day with my wife, Matt and Atlas. The photo doesn't really have anything to do with my story, but I like the photo and putting it on there.
Early that morning Macy, who cannot walk on the bed but has to walk on top of me, walked up around my head and sat on my shoulder. She sniffed  my face and sort of woke me up. She probably was afraid she was getting low on food and would die. She then ended up laying on my shoulder and licking my face and head before falling asleep. Later on I coughed and away she went. When she ran away she woke Atlas up.
I assume it is because it was Father's Day but Atlas turned around, which he never does, and put his head on my stomach. A little while later Macy came back and jumped up on my feet and I could feel her start walking toward my head ...and then she saw him! Her way was blocked by the big evil beast. I could tell she was frozen and she didn't know what to do. She stood there for a long time, then I felt her lay down on my feet and go to sleep. Atlas stayed with his head on my stomach for quite a long time so she could not come up by my head. It was pretty funny, and I think Atlas was giving me a Father's Day hug.

A nice evening gone bad.

When I started this blog I decided I wanted to be honest as possible about the stupid disease. Last night we went down to listen to some music, have dinner and a few beers at an outdoor event. It was a really nice evening and I had a good time. I ended up ruining the night though with the bad attitude.
I find it very frustrating now that I cannot drive my own chair. I cannot feed myself or give myself something to drink. I'm totally dependent on others around me and this is made even worse because my voice is so faint that when there was background music no one could understand me.
When it was time to leave we ended up having problems getting me into the van in the right position for the locking mechanism. I got driven into the dashboard and it hurts my knees. I tried to say "back up" but I'm not sure it came out very loud and so I got driven into the dashboard a 2nd time and that hurt even more. In my frustration I swore at my wife and I felt terrible about it ever since. I've  hurt her feelings before and that was not my intention today but I was just frustrated and took it out on her. We finally got locked in and came home. I apologize to everyone who heard me cuss. It has always been one of my greatest weaknesses and seems to come out more often than I care to admit. Since I can't drive my own chair anymore, my attitude has suffered.
If this is me being honest, I wish I could say I learned something from it, but I don't think that will happen. I need to learn how to accept being dependent. My wife is great at guessing what I'm trying to say or guessing what I need. She is a great caregiver and I feel bad about my attitude.

Medical update

My wife got things straightened out with the doctors. There was a miscommunication between the neurologist office and my primary care physician. We went back down to the hospital last night and got the x-rays and had even more blood work.
I guess they are being extra cautious because once I start the new drug I will be unable to take any immunization during that time. MS is considered an autoimmune disease and the new drug must somehow attack part of my immune system. I guess this is why I cannot receive an immunization during that time. Seemed kind of weird though that no one ever suggested I get immunized for pneumonia or shingles before this.
Now we wait for what I really can't say. Some of the blood work was to prove I am immune to the childhood illnesses we were immunized against before kindergarten. I don't expect much new info about this for a while. I think the next step will be shingles and pneumonia vaccine. Then the 6 week wait.

Frustration – Medical Field

Had a great morning Monday. We found out last week that for this new MS drug I needed to get blood tests to prove I'm immune to all the childhood diseases that I was immunized for as a child. I said I got those before school, but they said there no record so we have to get a blood test. Also because of my breathing problems we did an x-ray to prove I don't have tuberculosis or pneumonia. This is a little annoying because a year ago I had a chest x-ray so they know I don't have tuberculosis and a blood test could have shown pneumonia or not. So we went down to the hospital where we could get both done and after the blood test we found out the doctor's staff forgot to order the x-ray. So we wasted a trip down there.

So today we will try again and we found out I need yet another blood test of some other sort. At this point I'm wondering if it's even worth the trouble and the wait. I still have to get pneumonia vaccine and shingles vaccine and then wait 6 weeks for the new drug. That's assuming they don't realize I need something else too. We keep getting told this drug is new so they're not sure what is required. I don't think that excuses ordering the chest x-ray and then forgetting it. I think they ordered chest x-rays all the time so the new MS drug is no excuse.

Personally I would just sign off on all this crap and get the new drug if I could. It seems to me 90% of this is to cover the doctors but if something goes wrong. What could go wrong at this point? It wouldn't make me a quadriplegic because I already am. I know where I'm going if I pass away so that is not a big deal to me if it happens. I know I believe in him and I'm persuaded that he is able to save me to the utmost! Jesus is Lord and Savior. Oh well,  I guess I don't get a say that with the doctors.

A really nice day!

Today my wife took the day off of work so we could spend some time with Tom before he deploys to Korea. We went down to one of my favorite lakes, McBride, where we used to fish and kayak a lot. There's a nice trail that I thought would be good to go on with my power chair. The trail has a lot of shade and I got up at 8 o'clock so we could beat the heat. It was pretty nice in the shade and there was a nice breeze so it wasn't terrible like it will be this afternoon.
I don't think I have ever seen Atlas this happy. Got to fetch his dummy from the water where there were no people and then find it in the woods when it was thrown there when there were people in the water. Very happy pup!
I would say it was one of my best days I have had since I've been wheelchair-bound and unable to drive my own chair. I've always enjoyed this Lake especially because of the trees and the shade. Fortunately the breeze kept the bugs off of us so they were not a problem.
Afterward we went to lunch at Emil's a local bar and grill. I had an awesome Frisco sandwich and one of my favorite beers "Workmen's Comp." We came a home and everyone took a nap except me because I needed to catch up on my Facebook stuff and try to put this down on my blog while it was still fresh. Really nice day!

Ocrevus update

I sure thought getting this new MS drug would be fairly straightforward. Silly me, got a call from the doctor yesterday and now I need to get a chest x-ray, tuberculosis test, blood work to prove I'm immune to smallpox, measles and mumps. I guess it doesn't count that I had these immunizations when I was a kid. I also need to get any immunization for pneumonia and one for shingles. Then I have to wait 6 weeks after these new immunizations before I can get the new infusion of MS drugs. Of course, the chest x-ray will be the most difficult. When I had one in the hospital a few years ago I was fortunate that the x-ray machine could be made to work while I was in my wheelchair. Nothing comes easy I guess.

Cure for self-pity and isolation

Due to my MS, I am often filled with self-pity. I can't say I was immune to it before I had symptoms of MS, but MS as given me a lot more time to dwell on what I've lost. The good news is that God has outlined a way for those who know Jesus as Lord and Savior, to find a way out of self-pity. The verses below stir me to think outside myself and thereby lose my self-pity. Like many things, I fail in the execution but this solution is always there.

We're told to think on good things of which I have many in my life and the life to come. It is very difficult to explain how to allow God to lead us into good thoughts but he will do it if we are not opposing him with our own line of thinking. It requires a certain amount of passivity to allow good thoughts when all we are filled with is bad thoughts.

There are many other verses that give a similar thoughts but I've always enjoyed the ones in Philippians especially. Verse 8 in particular: "think on these things".

4 Rejoice in the Lord always: and again I say, Rejoice.

7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

8 Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.

9 Those things, which ye have both learned, and received, and heard, and seen in me, do: and the God of peace shall be with you.

Miscellaneous update – Wednesday

This week is sure slipping by. Most mornings are taken up with reading my emails, reading the Gazette and catching up on my Facebook feed. Sometimes the Facebook takes one half hour and sometimes 2 hours depending on how long it's been. Monday I a doctor's appointment with the pulmonologist tech. Most of her tests word supposed to be done in a airtight chamber. There was no way it would work for me. Even if Tom could lift me in their I would not be able to stay upright and would fall forward. So she more or less said the exact same tests that I had done at the pulmonologist office. I find all the fuss of taking me somewhere wears me out mentally. I think the pulmonologist will prescribe me a breathing aid that I will use at night so that my diaphragm and breathing muscles get more rest than they do now. All I think is "yea one more thing to deal with".
Monday I felt pretty blah and did pretty much nothing in the afternoon until my appointment. I guess MS has taught me how to just sit here and daydream. I never fell asleep, which is good because then it won't affect my sleep at night. So Monday was kind of a weird day. I think I'm finding it more difficult to wake up fully and I'm groggy for a lot longer in the mornings and I used to be.
Tuesday was taken up by something I've been talking about doing for 5 years. Tom, Matt, my wife and myself went to a lawyer to draw up a will and power of attorney for them to sign for me. There is also a form that we can fill out at home detailing our medical wishes for my wife and myself. We were there for more than an hour and when Tom and I got home, my wife and Matt went to work, and I had Tom drive me out to the screen patio. I listened to music on my phone and ended up falling asleep even though I tried not to. I have already posted some of the details of that on Facebook the other day.
Macy has been having problems lately. She has been throwing up about once a week. It's not from hairballs. She used to have a hairball about twice a year but now I'm afraid her food is not agreeing with her. She is due for her yearly checkup pretty soon. I hope they figure something out. It's kind of a mess for my wife to clean up. She usually finds it before she goes to work. Yuck!
Hopefully I'll post something tomorrow that's a little more uplifting. I still feel sleepy and groggy. I have my big tough guard dog here to protect me from things like the FedEx man who came today. If Atlas was not here I'm pretty sure the FedEx man would've kidnapped me and sent me to Texas or some miserable place like that.

Show that I'm addicted to

I mentioned that I have become addicted to a show I found on Amazon prime video. It's called "Orphan Black". Not sure why they call it that but they do have a Canadian logo at the end so I don't give Canadian things too much thought or it hurts my head.
In the show it starts out with a girl who has recently gotten off of drugs and is returned to the town where her daughter is. She is cleaning up her act but still has no money or job and wants to get her daughter back. She gets off the subway and sees a woman walking up to a map near the subway line. Woman takes off her shoes and sets her purse down. The main character Sarah starts walking toward her I think to grab her purse. As she gets near, the woman turned around and she sees that they looked like twins. The woman then steps in front of but subway train to commit suicide. Sarah grabbed her purse and through a series of events related to this woman finds out she is one of an unknown number of clones.
She finds out this woman had $75,000 in the account and decides to get that money, take her daughter and the foster brother she grew up with and disappear. Course it doesn't work out like that. She assumes the woman's identity goes to get the money and finds out she has to wait to get that much cash. So while she's at a woman's apartment looking for other things of value she gets trapped in becoming this woman's identity.
So when a very short time she finds out the identity she assumed snowballs and she is trapped. She finds out about the other clones and that's someone is trying to kill them. From there there's too many twists and turns to even begin to do it justice. There are 5 seasons I can watch and I'm now into season 2. My wife watched a little bit of some with me before she went to sleep and she said she had extremely strange dreams at night. Now I'm addicted and can't wait to find out what happens next.

Atlas – I think I'm going to be spoiled

Not much to post this week. Tom and Atlas are here until his deployment mid June. All this makes it a little harder to find time to use my voice software because I need to be here by myself. Any background noise like the ice machine, opening food packages and even talking on the phone from a different room affected the software listening. It's pretty weird how many mistakes it makes with me sitting right here but I can pick up somebody talking on the phone in a different room and dictate it correctly. I know part of it is that my right side of my face is numb from that trigeminal neuralgia procedure I had a year ago but it really doesn't explain how bad it really dictates.
I love having Atlas here and he will be here for the year on Tom is deployed overseas. We had a fence put in or actually Tom did mainly to keep other dogs away from Atlas unless they are invited. Over the weekend there was one day where Atlas and 2 other dogs were out there. One was my niece's dog a shepherd mix, and Gronk who is a old English bulldog. Of course all Atlas cared about was fetching the ball.
I'm going to be pretty spoiled having Atlas here for a year. The photo above is Atlas as a taco dog while I'm getting up in the morning. He loves to be under the covers. At night he comes and gives me a hug where he puts both feet on my chest and lays his head down. A lot of times he gives me kisses because I can't get away.
Last night, Tom helped me put my right arm and sort of get him in a headlock. Since I cannot move my arm he can get out anytime he wants but for some reason he thinks he's trapped. As soon as somebody calls him he jumps out of my arm, but while he is there is such a sweetie. I'm definitely going to be spoiled while he is here. Of course when my wife is here he is pretty much attached to her. He loves his Grammy. I call him her shadow because he follows her around wherever she goes. When she's in the kitchen he stands between her and the cupboards. He's not waiting for food so we really don't know what he is doing except he wants to be wherever she does. That's all I have for now.