I have an appointment for my 1st infusion the new MS drug. The date is August 10. I referred to it as the new MS drug because my voice software can't do the name of it correctly. It is very tedious to correct things that I'm dictating. Sometimes I just get so tired of fighting it that I just leave the mistake. My wife is pretty happy about it and she has done a lot to coordinate my primary care physician and the neurologist. When we go to one you tell them to send the records to the other one but somehow that gets forgotten. Without my wife expediting things I probably still be waiting this time next year. I want to discuss the effect emotionally on me about this new drug because it is not what I expected.
One thing I can say is that my mother was from Missouri, the show me state. I've always had this attitude and mindset of "show me the results". We started up this process for the new drug quite a while ago. I have had a lot of time to think about it and I think that is been difficult for me. Since I was diagnosed I have read and been told over and over again there was no hope of any medical solution in the works for my type of MS. I have primary progressive and I came to terms with that a few years back. I learned to accept what it is because "it is what it is" and everyone's is different. Now recently I've been faced with the prospect of a medical treatment that may or may not prove effective. Only way to find out is go through it and see.
So I fought a mental and spiritual battle for quite a while now thinking about this new drug and unfortunately reading too much about it. I don't want to get my hopes up because I accepted what I have. Now I'm fighting the battle of dealing with the "what if this, but if that" scenarios. He mostly I've been all over the map. I'm afraid to hope but they keeps creeping in. Will I get the use of my right hand back so I can drive my own chair, feed myself, scratch my images, throw the ball for the dog, scratch the kitty ears so she likes me again and be less of a burden on my wife. Then I wonder what if it works even better than I can get out of my chair on my own again. That I wonder what if it doesn't work at all and all this rigmarole has been for nothing. That I wonder will the drug infusion make me ill. Not sure that part really bothers me much because at this point I'm willing to try anything. Other worries are, what about infusion number 2 and the follow up infusion is not comped to me by manufacturer as the 1st ones are. But I wonder why does an insurance cover it and will they in the future. The cost is ridiculous and if we have to pay for it it won't be possible.
So I really struggled for the last couple of weeks because I keep looking at the circumstances I'm surrounded with and burdened with along with my wife and kids. I have not been praying and reading the Bible very much and have suffered spiritually because of this. When I am spiritually close the Lord Jesus all these trials I'm going through seem like "light affliction but for a moment". Last couple weeks I've been trudging through this morass on my own and is not so easy to get back to trusting the Lord. I was diagnosed in 2009 and never expected anything to be approved medically for my type of MS in my lifetime. This new one was a surprise to me and I wish I could be more optimistic but of course I'm afraid of hoping to much. I've always found that being optimistic and hoping lead to "crash and burn's".
Please pray for me that I can handle these ups and downs a little better than I have been. Thank you so much in advance!
Phil and Macy
Monday, July 31, 2017
Thursday, July 27, 2017
MS Update – breathing machine and miscellaneous
I couldn't post yesterday because I forgot to have the TV muted. My wife was able to get my breathing machine working. She got a few ideas from the breathing machine lady but when they came right down to it she doesn't know what she did to get it going. I told her that's how I often think things in years past. I just take things apart and fiddle around with them and when I put it back together somehow it works. I can't believe all use to it I have become in just a week. I especially noticed that in the mornings.
I like the page that pertains to the new drug for MS that I am working toward. It is on face book. I might have to turn it off my newsfeed because there are so many posts is ridiculous. I'm glad for the information but I had to quit reading all of them because it just took too much time. The number 1 side effect seems to be fatigue for days after the infusion. The number 2 seems to be itching in the years ahead during the infusion. They give you Benadryl and that is when I take because I have MS itching now when I go to bed. Hopefully I won't have that problem or my wife will be on scratching duty during the infusion. I will have to remember to take the scratching do Hickey I bought a long time ago.
Well I can't think of anything more to post about MS lately. I did read a headline on Facebook from the MS site the talked about looking for the silver lining in MS. I would say categorically I find no silver lining. MS socks and anyone who tells you different is just sharing wishful thinking. I have learned things I wouldn't have without MS but honestly I don't find any silver linings at all. I have learned to appreciate my wife and other caregivers but I would not call that a silver lining. I wish I can do some of the things for myself and I feel like a burden. So you silver liners out there please poke yourself in the eye with a sharp stick! That's humor if you cannot tell.
I didn't think of something else about MS. I think perhaps I'm going a little bit stir crazy. Don't just a minute ago I thought today was Friday. I sent an email talking about trying to go to listen to music. Since I thought it was Friday today I put in the email, music tonight. I realized today is Thursday.
I like the page that pertains to the new drug for MS that I am working toward. It is on face book. I might have to turn it off my newsfeed because there are so many posts is ridiculous. I'm glad for the information but I had to quit reading all of them because it just took too much time. The number 1 side effect seems to be fatigue for days after the infusion. The number 2 seems to be itching in the years ahead during the infusion. They give you Benadryl and that is when I take because I have MS itching now when I go to bed. Hopefully I won't have that problem or my wife will be on scratching duty during the infusion. I will have to remember to take the scratching do Hickey I bought a long time ago.
Well I can't think of anything more to post about MS lately. I did read a headline on Facebook from the MS site the talked about looking for the silver lining in MS. I would say categorically I find no silver lining. MS socks and anyone who tells you different is just sharing wishful thinking. I have learned things I wouldn't have without MS but honestly I don't find any silver linings at all. I have learned to appreciate my wife and other caregivers but I would not call that a silver lining. I wish I can do some of the things for myself and I feel like a burden. So you silver liners out there please poke yourself in the eye with a sharp stick! That's humor if you cannot tell.
I didn't think of something else about MS. I think perhaps I'm going a little bit stir crazy. Don't just a minute ago I thought today was Friday. I sent an email talking about trying to go to listen to music. Since I thought it was Friday today I put in the email, music tonight. I realized today is Thursday.
Tuesday, July 25, 2017
Breathing machine ups and downs
There are so many ups and downs in life and with MS there seems to be a few extra. Yesterday afternoon the breathing machine lady came to ask how it was working. My wife brought it into the living room and we went over all was working (which is pretty good). I told her I had one problem that initially and putting it on it puts my breath a little too hard and the access would come out of my mouth. She showed my wife out to ramp it down which would stay that way for 20 minutes and then revert back to what the doctor had her begin with. At sounded good. It was working fine on the battery while was in the living room. It has a 5 hour battery backup.
That night when my wife put it on me it wouldn't work and Telling of a fault that it wasn't plugged in to power. It clearly was plugged in and she even tried plugging in an to a different outlet to make sure. So my last night without it which is a catastrophic but for somebody who required it to breathe it would've been a huge problem. I think she was going to call the lady today and tell her the problem. I kind of missed it and it definitely helps me sleep and gives my diaphragm I needed rest. Hopefully it will get figured out pretty soon.
I had a very strange thing happened when I was asleep. When I woke up I found my right here is not hearing very well. I've never had this happen except when it was full of water. I don't think it can be that since I haven't been in water since Saturday. Just one more thing to either ignore or go to the doctor for. It's a real hassle to make an appointment and have my wife miss work to take me. I tend to just muddle through and avoid the doctor visit. My doctors are pretty good but when it's hard to figure out the neurologist says go see your primary care physician in the primary care physician asked what the neurologist said. So I just try to wait and see if it would get better on its own. Not sure if this the best but it's how I deal with things.
That night when my wife put it on me it wouldn't work and Telling of a fault that it wasn't plugged in to power. It clearly was plugged in and she even tried plugging in an to a different outlet to make sure. So my last night without it which is a catastrophic but for somebody who required it to breathe it would've been a huge problem. I think she was going to call the lady today and tell her the problem. I kind of missed it and it definitely helps me sleep and gives my diaphragm I needed rest. Hopefully it will get figured out pretty soon.
I had a very strange thing happened when I was asleep. When I woke up I found my right here is not hearing very well. I've never had this happen except when it was full of water. I don't think it can be that since I haven't been in water since Saturday. Just one more thing to either ignore or go to the doctor for. It's a real hassle to make an appointment and have my wife miss work to take me. I tend to just muddle through and avoid the doctor visit. My doctors are pretty good but when it's hard to figure out the neurologist says go see your primary care physician in the primary care physician asked what the neurologist said. So I just try to wait and see if it would get better on its own. Not sure if this the best but it's how I deal with things.
Monday, July 24, 2017
Weekend update – Breathing, Atlas and Miscellaneous.
I would give a weekend update. We had visitors, Janette's family on a couple different occasions. Friday her sister Joyce and Mike are brother-in-law came over for pizza Friday night. As we were talking Atlas was a little surprised that he was in the center of attention. So he grabbed his new toy which I thought was an otter but I've been told it's a beaver, he flipped it around in the air and then jumped on top of it. He added that is involved and lifted it up and shook it. It was as if he was saying "look at me, look at me, see how much fun I am!"
Eventually someone threw it down the hall for him to patch and he was a happy camper.
Now much on Saturday this time of a rest day for both of us. My wife at a back spasm and took some muscle relaxers and then slept pretty much the entire day. Matt came over so we did a few things like let the dog out and give me my afternoon set of pills.
Sunday was a surprise engagement for my one who lives in Guttenberg. I didn't go for my wife and her sister went long with her mom and aunt. It was vineyard near their. The weather report and not being wrong because it said it would be close to 90. It was in the low 80s so is more comfortable than anyone thought. Matt came over to take care of me, babysit me.
We ended up taking Atlas to the dog park because it was breezy and in the low 80s so I can tolerate it. He loves the dog park but we don't know why because you really doesn't interact with the other dogs. He seems to really like it when they try to get the ball away from him or just in buyer that he has a great toy. He seemed to make friends with a poodle type dog. She wouldn't chase it but she was waiting for him when he got back and ran around him like he was some big cool guy.
So it was a pretty nice weekend overall. It got to enjoy family, pizza, resting and going to the dog park. I've been using my B PAP machine. It's kind of strange because when my wife comes to bad she turns on an LED that I bought so that my face is lit up so I can use my smile mouse. It sort of works even when I have my breathing nose connection on. I call my hose knows and I feel like an elephant. I can turn the pages on my Kindle book this way. For some strange reason though it seems to work for quite a while and then all of a sudden just quit working and I can't turn the pages. At this point I end up just closing my eyes and going to sleep eventually. It drives the engineer in me a little crazy because it works and then it stops and I can't figure out why and fix it. To me it should work the same as long as nothing changes but this just stops working. Maybe someday I'll figure this out.
So I wanted to report a little bit about my breathing machine. It does rest my diaphragm and I'm able to cough up the phlegm that accumulates overnight. This really helps because I used to not have enough breath to clear my lungs. I so run out of breath in the evenings as far as talking. I could try more time on the machine but I hate to do it when my wife is at work. Maybe I will gain more confidence in as we progress.
Thank you again for reading my blog. I appreciate all your thoughts and prayers for me and mine.
Eventually someone threw it down the hall for him to patch and he was a happy camper.
Now much on Saturday this time of a rest day for both of us. My wife at a back spasm and took some muscle relaxers and then slept pretty much the entire day. Matt came over so we did a few things like let the dog out and give me my afternoon set of pills.
Sunday was a surprise engagement for my one who lives in Guttenberg. I didn't go for my wife and her sister went long with her mom and aunt. It was vineyard near their. The weather report and not being wrong because it said it would be close to 90. It was in the low 80s so is more comfortable than anyone thought. Matt came over to take care of me, babysit me.
We ended up taking Atlas to the dog park because it was breezy and in the low 80s so I can tolerate it. He loves the dog park but we don't know why because you really doesn't interact with the other dogs. He seems to really like it when they try to get the ball away from him or just in buyer that he has a great toy. He seemed to make friends with a poodle type dog. She wouldn't chase it but she was waiting for him when he got back and ran around him like he was some big cool guy.
So it was a pretty nice weekend overall. It got to enjoy family, pizza, resting and going to the dog park. I've been using my B PAP machine. It's kind of strange because when my wife comes to bad she turns on an LED that I bought so that my face is lit up so I can use my smile mouse. It sort of works even when I have my breathing nose connection on. I call my hose knows and I feel like an elephant. I can turn the pages on my Kindle book this way. For some strange reason though it seems to work for quite a while and then all of a sudden just quit working and I can't turn the pages. At this point I end up just closing my eyes and going to sleep eventually. It drives the engineer in me a little crazy because it works and then it stops and I can't figure out why and fix it. To me it should work the same as long as nothing changes but this just stops working. Maybe someday I'll figure this out.
So I wanted to report a little bit about my breathing machine. It does rest my diaphragm and I'm able to cough up the phlegm that accumulates overnight. This really helps because I used to not have enough breath to clear my lungs. I so run out of breath in the evenings as far as talking. I could try more time on the machine but I hate to do it when my wife is at work. Maybe I will gain more confidence in as we progress.
Thank you again for reading my blog. I appreciate all your thoughts and prayers for me and mine.
Saturday, July 22, 2017
Some medical updates
Am getting a little impatient about my Ocrevus.. This week I have a booster for the hepatitis vaccine. We don't have a clear answer on when I will get my 1st infusion but I'm ready to go. I'm really hoping to get a roll back so that my right hand and arm start working again little more. Maybe it will be a miraculous cure and I'll be able to get out of my share (yeah right I think that too much to hope for). I have read a few things on Facebook and some of the reactions are significant but not severe and some of them are nonexistent side effects. One guy he was pretty funny and his dog barking in the background and he said he hoped infusion would help his dog with barking at everything. As one of the reasons I want to drive my chair again. Atlas minded me better when I can drive over by him and scold him from above. Now he kind of ignores me and that's is to get a treat off of my lap table. Then the years me pretty good.
Last night he came in and laid with his and on my shoulder for about an hour. Last night and the night before the cat game in and we had both of them cuddling with us. It's always sweet when they both are affectionate.
I've use my BPAP machine for 4 nights now. It is powerful enough that it does my breathing for me and rest my diaphragm. 3 of the 4 days I had enough mojo clear the phlegm out of my lungs. One day I coughed all day though it could never really get the phlegm out. 2 of the 3 nights I can use my smile mouse and turn the pages of my Kindle books. 2 nights it worked okay and then just quit. Not sure why. I did up going to sleep early those nights.
Always find out a significant negative about our well marked insurance that we have to my wife's work. We thought it was a $2500 per person deductible. We thought I had met my $2500. My wife is been online check to make sure and she found out that it is $5000 deductible for both of us together. So my breathing machine won't be paid for by insurance Ike we thought. Oh well nothing ever seems a break our way with insurance. The cost just keep going up and up the.doc couples go up and up and our co-pay goes up and up. Seems hard to believe all 3 facets would go up at the same time. It's not cheap be and sick. I can see why some people go bankrupt.
Well the little girl I had mentioned a while ago that had liver cancer had a great turn and her situation. One day she was supposed to start chemo again because the cancer and come back and was in stage IV.. 20 minutes before the chemo would start she got news that a transplant series of mortgage were available. She ended up needing her lever and 2 other ones at the same time because the connections to her liver were cancerous. She is at some ups and downs waiting to see if the organs were accepted or not and after a roller coaster ride her body is excepting the organs. Sure hope for a great outcome. She is up and walking now even though she is on an IV. She is the wonderful little determined 3-year-old. I call
Last night he came in and laid with his and on my shoulder for about an hour. Last night and the night before the cat game in and we had both of them cuddling with us. It's always sweet when they both are affectionate.
I've use my BPAP machine for 4 nights now. It is powerful enough that it does my breathing for me and rest my diaphragm. 3 of the 4 days I had enough mojo clear the phlegm out of my lungs. One day I coughed all day though it could never really get the phlegm out. 2 of the 3 nights I can use my smile mouse and turn the pages of my Kindle books. 2 nights it worked okay and then just quit. Not sure why. I did up going to sleep early those nights.
Always find out a significant negative about our well marked insurance that we have to my wife's work. We thought it was a $2500 per person deductible. We thought I had met my $2500. My wife is been online check to make sure and she found out that it is $5000 deductible for both of us together. So my breathing machine won't be paid for by insurance Ike we thought. Oh well nothing ever seems a break our way with insurance. The cost just keep going up and up the.doc couples go up and up and our co-pay goes up and up. Seems hard to believe all 3 facets would go up at the same time. It's not cheap be and sick. I can see why some people go bankrupt.
Well the little girl I had mentioned a while ago that had liver cancer had a great turn and her situation. One day she was supposed to start chemo again because the cancer and come back and was in stage IV.. 20 minutes before the chemo would start she got news that a transplant series of mortgage were available. She ended up needing her lever and 2 other ones at the same time because the connections to her liver were cancerous. She is at some ups and downs waiting to see if the organs were accepted or not and after a roller coaster ride her body is excepting the organs. Sure hope for a great outcome. She is up and walking now even though she is on an IV. She is the wonderful little determined 3-year-old. I call
Thursday, July 20, 2017
Music
Night a friend of mine is going to the Nickelback concert. There are a lot of people that don't like them but I never figured out why. I'm not a big fan of theirs I enjoy their songs when they are on the radio. She wasn't sure what I like music wise and it is a pretty long answer so I thought I'd post it on my blog.
In my middle teens, after I got a job, I started buying the Chicago albums. This was my 1st foray into music that was my own interest. I also had a friend who like "underground" rock music. I learned to enjoy some of his music like Fleetwood Mac, Yardbirds and cream.. I also found one Beatles album I like and that was Abbey Road. I never was much of a Beatles fan but that album was really good. Other groups I like then were Edgar Winter and Steppenwolf. About this time my friend Mark started listening to Dylan and I became a fan. I was already starting out with a pretty eclectic group of music that I like.
After I got an iPhone I started realizing I could buy all of these favorites from the old days on iTunes. These fill up about a quarter of my phone music. Then there were a number of years where he became a country fan. It kind of coincided with the layoff in the early 80s and it was nice hearing sob stories in song. I've always been a George Strait fan ever since then. I've downloaded is 50 greatest hits on to my phone. There are other going to groups I like and I added them just to get some balance and my song group. I've also added quite a few songs and artists from the TV show "The Voice". It's amazing how good some of the singers who are that are good enough to win. One of my favorites dad went and that was a little country girl named Daniel Bradberry.
And for number of years my wife listen to Christian songs on the radio. After I got an iPhone I started downloading some of them that I like. One group in particular have a lot of is Mercy Me. Shawn McDonald is pretty good too. I've added a few others just to keep a balance.
So I guess I like classic rock, folk music, some hard rock, some like rock, the blues, country, some Christian.
Others not mentioned that I have enjoyed and probably purchased but didn't mention:
Patsy Cline
Linda Ronstadt
Dolores Riordan
Amy Grant
Garth Brooks
Sawyer Brown
Amos Lee
some Led Zeppelin
I lost some of this music when my hard drive crashed on my desktop. I was able to get most of it back with some was lost for good.
I think music is like art – I don't know what good music is but I know what I like.
In my middle teens, after I got a job, I started buying the Chicago albums. This was my 1st foray into music that was my own interest. I also had a friend who like "underground" rock music. I learned to enjoy some of his music like Fleetwood Mac, Yardbirds and cream.. I also found one Beatles album I like and that was Abbey Road. I never was much of a Beatles fan but that album was really good. Other groups I like then were Edgar Winter and Steppenwolf. About this time my friend Mark started listening to Dylan and I became a fan. I was already starting out with a pretty eclectic group of music that I like.
After I got an iPhone I started realizing I could buy all of these favorites from the old days on iTunes. These fill up about a quarter of my phone music. Then there were a number of years where he became a country fan. It kind of coincided with the layoff in the early 80s and it was nice hearing sob stories in song. I've always been a George Strait fan ever since then. I've downloaded is 50 greatest hits on to my phone. There are other going to groups I like and I added them just to get some balance and my song group. I've also added quite a few songs and artists from the TV show "The Voice". It's amazing how good some of the singers who are that are good enough to win. One of my favorites dad went and that was a little country girl named Daniel Bradberry.
And for number of years my wife listen to Christian songs on the radio. After I got an iPhone I started downloading some of them that I like. One group in particular have a lot of is Mercy Me. Shawn McDonald is pretty good too. I've added a few others just to keep a balance.
So I guess I like classic rock, folk music, some hard rock, some like rock, the blues, country, some Christian.
Others not mentioned that I have enjoyed and probably purchased but didn't mention:
Patsy Cline
Linda Ronstadt
Dolores Riordan
Amy Grant
Garth Brooks
Sawyer Brown
Amos Lee
some Led Zeppelin
I lost some of this music when my hard drive crashed on my desktop. I was able to get most of it back with some was lost for good.
I think music is like art – I don't know what good music is but I know what I like.
Tuesday, July 18, 2017
Breathing Machine and the Dog Park – 2 subjects in one post!
After a series of visits that included the pulmonologist, I was approved for a Bi-pap machine due to my difficulties with my diaphragm and breathing. Their representative came yesterday and hooked us up. I made a big point of making sure my wife knew how to run the thing. Later on I found out that I was condescending when I did this.
Oops, my bad. I wasn't my intention but I just wanted to make sure I wouldn't get asked something at bedtime because my eyesight is not so good anymore and even if people hold things in front of my face I have trouble focusing. So I ended the day being pretty crappy to my wife. Sorry honey I have a brain disease! I'm sure she'll forgive me but I wish I didn't have to be such a jerk sometimes. It's no fun being disabled for me or my wife.
I didn't have very much trouble getting used to the machine. The lady told me that a CPAP is a one on a scale from 0 to 10 and the one I got is an 8. It does my breathing for me and we plan on using it at night so that my diaphragm is not so tired during the day. I used it last night and had no problems. We'll see what the future holds with its use.
Added – there were 4 different masks to choose from. I selected one that goes over my nose and that is the one I used last night. I can still use my smile mouse to turn pages in my Kindle books. Control Fading in and out I have to work on that. Also selected one that discovers my nose but as little tubes that go in my nostrils. It's not it's uncomfortable as it sounds. It only sticks in about a quarter inch. That one seals around my nostrils but I don't think I can turn pages with my book. If I end up using the machine during the day that is the one old probably use. I have a couple of weeks and the representative will come back and see how that's working. So far after one night I think it's good. I have been coughing a lot less today. It may be because I am breathing filtered air.
Yesterday was the last day for quite a while that it was in the low 80s. Temperature and humidity are through the roof now. We took advantage of yesterday and took Atlas to the dog park. There were only about 20 dogs there and all he wanted to do was fetch the ball. He does seem to like it when other dogs chase him but other than that he rarely interacts with them. He loved to go there and starts getting excited and whining whenever my wife gets the bag out that she takes with her to the park. We know he loves to go.
One of the dogs there was there was a 14 week old Australian Shepherd. It still had its puppy fuzz and was so cute. It's kind of weird, but I don't really like kittens, but I like cats. I like puppies a lot and dogs too.
Well I'm running out of breath again so I'm going to sign off and remind you to "be careful out there". Does anybody remember the TV show that's from?
Oops, my bad. I wasn't my intention but I just wanted to make sure I wouldn't get asked something at bedtime because my eyesight is not so good anymore and even if people hold things in front of my face I have trouble focusing. So I ended the day being pretty crappy to my wife. Sorry honey I have a brain disease! I'm sure she'll forgive me but I wish I didn't have to be such a jerk sometimes. It's no fun being disabled for me or my wife.
I didn't have very much trouble getting used to the machine. The lady told me that a CPAP is a one on a scale from 0 to 10 and the one I got is an 8. It does my breathing for me and we plan on using it at night so that my diaphragm is not so tired during the day. I used it last night and had no problems. We'll see what the future holds with its use.
Added – there were 4 different masks to choose from. I selected one that goes over my nose and that is the one I used last night. I can still use my smile mouse to turn pages in my Kindle books. Control Fading in and out I have to work on that. Also selected one that discovers my nose but as little tubes that go in my nostrils. It's not it's uncomfortable as it sounds. It only sticks in about a quarter inch. That one seals around my nostrils but I don't think I can turn pages with my book. If I end up using the machine during the day that is the one old probably use. I have a couple of weeks and the representative will come back and see how that's working. So far after one night I think it's good. I have been coughing a lot less today. It may be because I am breathing filtered air.
Yesterday was the last day for quite a while that it was in the low 80s. Temperature and humidity are through the roof now. We took advantage of yesterday and took Atlas to the dog park. There were only about 20 dogs there and all he wanted to do was fetch the ball. He does seem to like it when other dogs chase him but other than that he rarely interacts with them. He loved to go there and starts getting excited and whining whenever my wife gets the bag out that she takes with her to the park. We know he loves to go.
One of the dogs there was there was a 14 week old Australian Shepherd. It still had its puppy fuzz and was so cute. It's kind of weird, but I don't really like kittens, but I like cats. I like puppies a lot and dogs too.
Well I'm running out of breath again so I'm going to sign off and remind you to "be careful out there". Does anybody remember the TV show that's from?
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