Last Blog

This will be my last post. I can no longer talk strong or well enough to use my voice software. I'm signing off and there are a few people I trade emails with, I'm sorry but I can't do that either. My diaphragm is getting bad and there is really no benefit to it.

One thing on the pet front is that my wife got a one year old chocolate lab because we thought when Atlas left, we'd miss him too much. Her name is Jordyn and she is a pistol. We hoped to wait another month or so, but you can't get the right dog unless you strike while the iron is hot. She's a bit of a cuddler.

Prescription Problems

I decreased to eliminate Baclafen starting last week. It's giving me double vision and nausea. I won't be able to post until I get straightened out.

Improvement

In the last post I was something of a downer. I found out again that Jesus "restores my soul". My wife finally got a hold of the doctors office. My doctor was off on Friday and she talked to are different person. She explained the pain situation and told them what we are going to do. He asked about eating more salt and taking more salt. The person agreed she asked about me taking salt pills and taking salt pills for the other. The elder Dr. or nurse agreed that was a good plan. That night I woke and did a lot of thinking. I realize on and found acceptance. I knew that my Lord could either heal me or find a way to allow me to live with the symptoms.
When my wife took hold of the situation and told them how we were going to address the pain and tried to fix the situation is helped me to see a way I would be taken care off.. Since the doctor was being nonresponsive she would take care as needed. I thought a lot about the doctor and can't figure him out but I have my wife and my advocate with God the father. I found "Rast for my soul".
We are not there yet but my wife took charge of the situation and will keep at it until the pain, my main concern, and the sodium problem, the doctors main concern, finds a balance. We have raised the pain medication has now taken care off the pain, we won't know for sure until I eat all three meals without paying. We came close yesterday and today started out paying less at breakfast. It is difficult to know how to deal with different doctors. If I had known how difficult the neurologist would be I would've started out with primary care doctor. We communicate very well. I expect to have a more positive post the next time I post on my health.

Problems posting last week

I have not posted a number for a number of reasons. One of them is that voice app word dictation kept crashing. Is the app that allows me to make the text size large enough to read. Menus are still there original size I have to go my memory when it works. I've tried rebooting and this time it worked. All week is has not reset it but this time is working. I have developed eye problems due to the nuerologists changing my medication. He did a blood test back before my last infusion. For some reason the blood tests was a problem. He found I had low sodium. We decreased the medication that helps my trigeminal pain and gave me a new. The new one did nothing for the pain so he came back. New one also gave me a strange side effects one of which was a problem in my eyes. Some days the eye problem lasts for four hours before the next dose. Some days it lasts all day. So what app that lets me increase the text size I am dictating blind. We reported these problems last week and is response was to keep following them and they get blood test to see where my sodium was. When we reported the pain problems that was ignored. I tried this now Monday pain was severe. Tuesday was so I could not drink or eat. I had to restart the pain medication that worked that work. My wife tried to report this. She could not get through to get a call back from the doctor. It's Friday now and still get through or get a call back. It seems he is purposely avoiding us. My opinion of him is now decreased so I think is a moron. Stoppard also and he thinks that I am a stupid patient that does not listen to him and I should just live with the pain. That would mean I never drank or ate again. I am pretty happy with the situation.
My voice is also a problem the software works. It fades out and I never know when it will and the voice software gets very confused. My annunciation is also decreased. I will think I can talk and nothing comes out. This not only is difficult for my voice software is also difficult talking to others. This week my wife experience a difficult week with the doctor also with her work. It was the double whammy and I think she is Max out. I am not sure she does because I am a burden and no help and now I have communication problem for her to deal with. I am afraid this Dr. thing as finally made me not care about anything. I have to go off now my voice is almost gone.

MS and embarrassment

I will post about our pets eventually and I hope I do not forget them. I have never had good memory and now it is horrible. It is so much worse than other people my age tell me that there's is. Other people my age tell me there's is bad and that is what is wrong with mine. I think they say this to make me feel better but they don't know how terrible mine really is.
It has come to my attention that my wife reads my blog and is embarrassed by some of the things I post that are probably more private than it should publish. I apologize to her and that was not my intention. Somehow I think that me posting the effects of MS will help others with MS. I hope some of the people who read| my blog are people with MS. My case is rare and extreme symptom wise. I hope other with MS will find that my eventual acceptance will allow them to accept their symptoms.
My personal experience is that it takes about six months from when I lose abilities before I have acceptance of them. A big part of this is that my wife adds more to what she already does which is almost everything. Part of me is tired of adding more to her and that is why some of my posts discuss very negative thoughts. Her unspoken acceptance allows me to eventually accept it. Now neither of my arms move anymore this is proving to be a very serious change. I'm finding that I'm losing the use of my neck and turning my head is getting more difficult. Some people think I am asleep. Now with the effects of my new medication I can say that every part of my body is now affected by my medical problems. Some people think old poor Phil but I think I'll pour wife. So back to apologizing, I am lost my ability to be humiliated back why was still working. Many of my problems I found to be embarrassing but one in particular, that I will not mention, talk my last bit of pride. I am never embarrassed and more. I should find a catheter change embarrassing but I don't. Sometimes my son takes me and I just chat with nurse. There are about six or so and is rarely the same one. One is is about my sons age and single. I tell him he should ask her out. He says it would be too weird to date someone who is seen my father like that. Oh well, I tried. The event that took way my last bit of pride reminds me of the character of Seinfeld, Jackie the lawyer. After representing Kramer he said "is the greatest of my many humiliations". I have that so many that I have become impervious. One of my problems is that with MS I am losing my speech filter. I have difficulty speaking clearly so it works out good if I don't say much. Well that's all for today. I hope to get to animal stories before I forget them.

New meds – crazy

I've been trying to post it sure isn't easy with the voice software not working real well. Part of that is due to a change in my medication. I had to go to neurologist because of my second infusion. He had to give his blessing. He had me take a blood test which have never been an issue. This time he tells me I have low sodium he wants to decrease by trigeminal pain medication and give me a new one call Baclofen. This medication did not decrease the pain and gave me side effects. Two of the side effects were not that big a deal because they went away not long after I woke. They were a pounding noise that sounded like it was coming from the attic. I knew it was not real. The other was very strange. The edges of things like the ceiling fan had a strange blue florescent light. The one that was a real problem was that it made my eyes blurry and I could not read the menus on my PC. I could make some things larger but the menus were still small. I could do some things by memory but other things I had to guess at. This cause some significant problems especially posting on the blog.
I told the doctor the pain was still there and so I increased the pain medication on my own. This seemed to annoy him and my next blood test showed the sodium was low. The next step was to decrease my pain meds and raise the dosage of the one you give me side effects. I guess he is large and in charge. Fortunately the increased dosage did not add to the side effects. The jaw pain is  back though. Got the impression that he does not care and is instructions will be followed. I got used to my primary care doctor who let me make decisions and then did his best.
I get a blood test next week so I will try to endure the pain. The strangest thing is that neither him or his nurse or found on the Internet knows what specifically comes with low sodium. My wife asked his nurse what it was when they did blood tests a few years ago. She had no answer and was speechless because they don't know. Dr. is just covering himself. Seems pretty stupid to me that they don't know what it was a few years ago but now it matters.
I had hoped to start posting animal stories because the cats are coming in their shells and we are finding the animal interactions pretty funny. Lacy, The Sweet cat is also the instigator and it pretty funny. Hopefully I'll be able to post more next week.

Stages of Phil

Naughty, frustrated and angry Phil. I woke up today and found myself frustrated. I'm not sure how much to say, maybe you would want to agree now. There is one part of me that still works. I woke up frustrated and said inappropriate things that my wife has told me in the past she doesn't want to hear those things. Sometimes when I am this way I become naughty Phil and say inappropriate things or emails. Today though I became angry Phil. I get in trouble for being inappropriate and feel guilty so I try to avoid that. When I turn angry I end up angry mostly with myself. I feel like I should have been able to overcome losing the use of my right hand. As I got worse and worse I should have realized how bad I would get. I thought being stubborn and wanting it to be true I would not lose the use of my right hand. I never imagined I would not be able to drive by chair. No I can no longer drive my chair and digests said at my PC. I read the newspaper, checked Facebook and try to post on my blog. It's getting harder to do any of those things. I think that if I had known how bad I would get I would have arranged a "tragic accident". By the time I realized how serious it would get I can no longer arrange an accident. This fuels my anger. There was a time I could have and ended my own life. I just couldn't do that though. I kept thinking of though horror I would leave for someone I loved. Every way I imagine that behind an awful memory that would stay with them forever. I just couldn't do that and so here I am. Now I realize this disease can probably get worse than it is now. My main caregiver is my wife and the advancing of the disease just means she has to do more things for me.
It is clear that she loves me and it breaks my heart to be such a burden. I guess as long as she can take care of me am bound to stick it out with her. I turned my life over to Jesus Christ my Lord when I was 25. Angry Phil thinks about this and goes through a series of mental and spiritual cycles to apply this to my life. I cannot be angry at my Lord Jesus because you love me and proved it on the cross. How can I hold onto anger and the did so much for me and continues to restore my soul. Think of John chapter 10 and reminded and am reminded of the good Shepherd and remember I heard his voice and follow him. Angry fell does not go with the good Shepherd. After manyl cycles I become contented Phil.
Five model through the day
so I model through the day. I find enjoyment using my PC, watching TV (a little bit)) and watching the crazy critters. I hope to post more on the animals later.
Sometimes I email or say inappropriate things trying to be funny. Other times is because I am frustrated and become naughty Phil. I would apologize but that seems kind of lame. There is no real excuse for my behavior, using eye disease is not an excuse that Goldwater. I do apologize but I know my apologies are not enough.
Well I think I posted some things that are difficult but are in the minds of quadriplegics.