Maple Or Vanilla

Well, it has not been a very good day for Patsy. She has been doing better on pain for the last couple of days. She took some Norco at 4:00 am and that was the last pain meds until just a few minute ago. She says her back is really hurting so I gave her some pills. We did have a bad night last night so we both slept in a little bit. I made her some breakfast and she got up about noon. We watched a movie and then I took her for a milkshake and a little drive.

Her legs are just not working. It looks like my job is about to get a bit more interesting. I might have to re-evaluate the bus floor plan to better be able to help her. This doesn't mean we are giving up but the baby steps that Pat was seeing are on hold. She still laughs at me when I really screw up. For instance, Pat has always made homemade syrup and we were out. I went to walmart to get some maple but some how when I got home, that little bottle of maple turned into vanilla. So I went back to the store and OOOPPPPPSSSS, I did the same thing. The 3rd time is a charm and I now have maple to make some syrup. Only problem is that I also have 2 bottles of vanilla. Iasked Pat what we would use vanilla in and she laughed and said I could use it in baking. I said "like when you make a pizza???? I think that was the wrong answer.

Davalee told me the other day to get a cook book!! She is just mad at me because I out bid her on a cookbook that we auctioned at a family reunion a few years back. It is her way to rub it in a bit. She can be real cranky sometimes. hehe

Ok I am in enough trouble now so I will see you tomorrow night,

"CAN YOU HELP ME PLEASE"

Well, let's see now. If I say it was a good day then how do I explain this next item. I was working on the bus and Marty stopped over for a minute. Somehow Pat slip by me and decided to go to the bathroom at Thereasa's house. I did not see her leave and thought she was still in bed. When Marty got ready to leave, he opened the door and there was Mother laying on the ground. She looked up at him and said "can you help me please". I asked her what happened and she said the 1 1/2 inch curb got the best of her. This is the place where I say #^%$$^^&&&^%^*&%*%. She is so independent that sometimes I want to just pull my hair out. That is why I keep it short.

She really had a good day other then that. I gave her some pain pills at 5:00 A.M. and let her sleep until about 10:00. I got her up and cooked her a big breakfast. I am trying to keep some good food in her especially when she takes a bunch of pain meds. We went on a short drive and she took a few Excedrin to prevent a headache that was starting to form. After a little dinner, we watched a movie and she went to bed for the night. Still no major pain meds and that is good. we will see how the night goes. Her legs are still her biggest problem next to her pain.

So again, I want to see her live every minute the best she can. To those that love Patsy like I do, you should know that I will take care of her. See ya in the funny pages, RAZ

A mixed day!!!

A mixed day to say the least. But let me start with some good news for Patsy and I. We learned today that they have approved her for her SSI and SSD. That means that we will now be able to have enough money coming in to pay the bills. The amount coming in is not a lot but it means that I can stay home and take care of Patsy and that will help a lot.

Over the last month, several people and family members have sent us some money and Pat received some today at dinner. That will carry us over until the SSI comes in . Please know how much you have helped us and especially me. It has not been the easiest thing for me to change my life around to become Patsy's care giver but it was a whole bunch easier not having to worry about how to pay the bills. The financial support will always be remembered. Please forward the info to everyone and tell them that we should be ok now and that further financial assistance will not be needed. I will have Carey send an email out as well.

Jeneane and Kelly invited us to dinner at the Texas Roadhouse in Boise. It is Patsy's favorite place to eat and we want to thank them for the treat. To make things better, all of her brothers and sisters were there and Rick and Rhonda (I sure hope I spelled that right). Paula even showed up for a bit. Patsy had a great time and it made for a wonderful day. She shed a tear on the way home. She was really touched.

So, as you might have guessed, she was really tired when I got her home and she went to bed early with a pretty hefty pain pill.

Remember the mixed day I mentioned. Well here is the bad news. Patsy has noticed that her vision is slipping a bit. As you know, that is a symptom of the CJD disease. We will see what Carol has to say when we go see her on Wed. We will remain hopeful for the best.

Thanks again for the love and support. RAZ

Is Patsy getting ready for the Indy 500????

We started out the day with a trip to town. I thought it might be good to get her out for a while and she only needed one pain pill so I thought she might have a good day. Her balance and legs were not doing very good so I made her try the battery wheel chair cart. Holy Crap!!!!! That ain't happening again. After knocking a display rack out of the way and getting some clothes stuck on the basket, I had to take over the controls in the tighter places. She hates it when I try to be a backseat driver. She finally got the hang of it as we were heading to the car, right up to the time she hit the all stop button.. It Stopped.

So how is she doing???? Well, I don't think she is getting any worse but I have not seen much improvement yet. Her legs just won't stay under her. The biggest problem that she seems to have is the amount of pain in her back and her head. If she can keep that down, then she can get by with just a couple of excedrin. She does pretty good then. But the Norco she takes to kill the pain have a tendency to make her more tired and along with that comes the weaker legs. We have another appointment with Carol next week and I am hopeful that she will address those issues.

Patsy's brothers and sisters have invited us to dinner tomorrow so she went to bed early to get some rest. All of the family has been so supportive and we really appreciate them so much.

Ok, enough for now Thanks for being here. See ya RAZ

Watching Patsy sleep

So, have you ever just sat by your spouse and just watch them while they sleep. I did that today. You see, Pat started off the day with some really bad back pain and some head pain. I gave her some pain meds and she spent most of the day resting and sleeping. I moved her to the couch so I could keep an eye on her while I did some house cleaning and bill paying. Or at least bill looking!!! As you all know, I have been by Pat side and not able to make a living. Some really good people and family have help and I don't know what we would have done without them.

Anyway back to Patsy. I was watching her sleep today and thinking of a lot of good times we have had together. But just then she started snoring and that kicked me back to reality. She can snore!!!

Anyway, she had a good day of rest and tonight we were invited to some recitals and she really wanted to go. The first one was with Scott and Denise's kids. They are really getting really good.

Then we left to go here Erin play the piano for a few friends. She is a young high school student who is very very good. She played a lot of music that Pat once played. It was fun.

So, we are home, we had a little dinner, Patsy is feeling pretty good so far. Her legs are still really weak and she has a really hard time walking.

But, as I have told you before. Any day that we have together is a good day.

Now it is your turn. I see quite a few people following Pat's progress. Take a minute and post a comment and I will pass it on to Pat. Let's keep her smiling. RAZ

She's back!!!!

Well, maybe that is a little premature. But, it was a good day. But let me back up a bit.

Last night Patsy was in a bit of pain so she took some pain meds at 10:00 and went to bed. At 3:30 this morning I got her up to go to the bathroom and then things got really crazy. As she walked by the end of the bed after doing her business, she reached for her bathrobe. When I asked her what she was doing, she said she was putting her bathrobe on so that she could go pee. That is when I knew it was going to get wild. I told her that she had just gone pee and she said no she hadn't. I managed to get her back to bed and then spent the next hour listening to some of the most bizarre stories I have heard. Ask me sometime to tell you about the fuzzy bucket with a hole in it. HEHE

Ok, so I woke her at 8:30 so that we could keep another appointment with Carol. We got there and Carol did some work on Pat. They laughed and talked and Pat even shared a story or two. (yak, yak, yak) it was really good to she Pat come away with a lot of optimism instead of what the Doctors have been telling her.

In case you want to know, Carol says that Pat is definitely going to get better and that the doctors are just wrong this time. She doesn't know how long it will take but she says that she will continue to improve.

We came home and Pat has been up every since. We have been talking and laughing and I have to tell you, It was wonderful!!! She had a slight headache but a few aspirin took care of that for now. She just told me that she was hungry and walked to the kitchen to get a bowl of cereal. I could not believe it. She didn't even use her cane.

I think this was a very good day and I would say that Pat took 3 baby steps today. It ain't over 'till its over. Thanks again for all your prayers and help. See you tomorrow night, RAZ

Is it good or is it bad???

Most of the time I just don't know and tonight is one of those nights for me.

After a pretty good night for Pat, a early pain pill and a little breakfast, it was off to see the Doctor and Carol. That's right, both in the same day. So today was Katy's last day with us so she decided she would run mom around today and I could stay here and get some work done on the RV.

The appointment with the Doctor did not go well. I understand that Patsy may only have a short time with us if the Doctors are right but just once I would like to have him say something besides go home and get ready. The diagnosis is not confirmed because the only way to do that is to have a brain biopsy and we are not going to do that because of the danger. It is nice to have someone to go to get pain meds but his attitude is that she should not even worry about taken blood pressure pills because that may be a better way to go then the disease that she may or may not have. Pretty discouraging.

So, the next stop was a trip to Carrol. it was almost worth the money just to have the positive attitude that Carrol has. Carrol says that the treatment that we have been giving Pat to get rid of the parasites has worked, she says she is not going to leave us just yet, and now we start rebuilding. She worked on Pat today and wants to see her tomorrow. (I can't tell you how much the money some have sent has helped)

Patsy has been up all day which is very good. However, most of the day she was laughing and giggling even at things that were not funny. Kind of like she was drunk. (yes I have seen pat drunk but a long time ago) Her legs are very week and she fell again while getting ready for bed.

So, is it good or is it bad??? Depends on who you choose to believe and I surely don't have the answer. But everyday that she is with us is a good day. The doc did give another prescription for pain. i picked that up tonight, $106.00. I hope her disability money kicks in soon.

Probably sound like I am a little down tonight and I guess I am. Tomorrow I will be better, I promise. Goodnight, RAZ

P.S. Thanks Katy for coming down and letting mom and me get to know that baby a little bit. It was a good thing for mom and I know it cost you a lot of money to make the trip but we are sure glad you was able to come down.

not much to report

Well folks, not much to report tonight. I was able to get out of here for a while today. Katy was here and her and Shailey watched Pat while I went to Ontario to do some shopping at Wal-mart. It was good to get away for a bit. Patsy had a pretty good night but today she had pain most of the day.

Tomorrow she has to Doctor appointments tomorrow so she went to bed to try to get some rest. It looks like Katy will be going home tomorrow night. we have sure enjoyed her visit and we just love that Shailey.

Ok, just a short one tonight. check with us tomorrow night for a doctor update. RAZ

Am I getting myself in trouble

I may be in trouble!!! Maybe I should stop writing these every night. I found out today that Thereasa and Jenni are scrap booking this darn thing and that means when Patsy gets well, She may want to read all of these. CRAP!!! Now I am wondering if I have put in something that Patsy might not want me to put in. Like what you might ask???

So should I stop writing??? NAAAAHHHHH

So here is her update, the good and the bad. Patsy had a really bad night last night with the pain issues. She ended up taking more Norco then she ever has to kill the back and headache pain!!

She finally got to sleep but I hate it when she hurts so bad.

I got up this morning and cooked her a good breakfast, helped her to the bathroom, and then helped her get to Thereasa's house so that she could take a bath. Showering on days like today is a no no. She can not stand and when she tries to shampoo her hair, it screws up her balance and she falls. So a bath works, at least until she is ready for me to get her out. Boy am I glad she lost 30 pounds!!! (that may be one of those things I might not want pat to know I said)

She came home and needed a nap. Some of her family was going to come over today but she was afraid that after last night she would just want to sleep after choir practice so I called them and told them not to come. They have all been such a big help that I hated to do that but we will make it up to them some how.

Let me tell you about choir. I was so worried that she would not be able to direct the choir today that I tried to talk her out of going. Her walking today was pathetic to say the least and I was afraid that he mind would not allow her to have a good practice. And to make things worse, she needed to take a pain pill 30 minutes before going to the church.

But, we went. I sat in a little chair behind her to catch her if she fell. I have to tell you, the choir is amazing and she had a really good practice. It is one thing to hear a church choir sing but it is amazing to here this group under pat's direction. Did I mention that Thereasa and Jenni and Cierra are all in the choir!!! Mom says they are not very good. (hehe I said that because I know they read this)

She came home from practice and went to bed with only one pain pill. After a little rest and time for the pill to kick in, she got up and ask me to take her for something to eat. We are now watching a little tv, and getting ready for what ever comes next. Thanks for being here with us, RAZ

Boy, you miss just one day and the phone starts ringing wondering why I didn't write yesterday.

Ok, I get it, I am back.

Patsy yelled at me today and I loved it. Well, yelled might not be the best word but she is definitely feeling better. Last night she did have a lot of pain. I am not sure why it always comes on at nights but it seems to. The last pain pills she had was at midnight last night. I got up at 6:00 to go to Boise to work a Ham Radio event. She was thinking of going but didn't get enough sleep and 6:00 was just to early. I made sure that Thereasa would be here to help mom. Pat got up and made Thereasa go get her a McDonalds burrito. I guess my cooking has helped her to appreciate the good food for a change.

Pat has had a pain free day and has had no pain pills today. Tomorrow is church and I will go to hold her up during choir practice so that I can prevent her from falling. She just won't give it up yet and I guess that is a good thing.

It is time to share this with everyone that is following Patsy. We believe that she is definitely on the mend. Her mind is sharper, her speech is better, and her strength seems to me to be getting better. She stills has problems with her walking and her short term memory. She also has a tendency to shake a little bit.

I realize that there are those out there who don't have much faith in the work of someone that I often refer to as the witchdoctor. But as of now, we just don't except the diagnosis of the neurologist. If you ask those of us that are with her everyday, they well tell you that she seems to be doing better. Thereasa even mentioned to me today that pat was having a good day today.

We are waiting for the results to come back from San Francisco and we do have another appointment with Carol on Tue.

So for now, Patsy is at least holding her own and we are very happy. Thanks for being here, RAZ

A hair cut and a shave???

Ok, I am back so here is an update.

For all the lady's out there and even some of the men, do you remember how good you feel when you go to get a hair cut. Add to that a new color and highlights. And then you wonder??? Is it to short??? Is it to dark or to light. Remember??

Well after laying in a hospital bed for days and then two weeks of hell not know whether the Doctor is right or wrong, I decided to take my wife and get her hair done. We stopped in on our way to the cabin to do that. Let me say that I think it is a blessing to find out who your true friends are before you leave this world rather than waiting until a funeral and you not be there to be with them.

The hair cut was just perfect and the coloring really brightened up her day.Then she told us that there was a special that day and customers didn't have to pay. And to finish it off, she gave Patsy a big hug.There was something special going on that day and Patsy will never forget it. Thanks Evonne for making her day and mine!!!

So how is she doing you ask?? Well, I guess it depends on the moment. We went to the cabin for the night and about 8:00 after a pretty good day, she started hurting really bad. I had to give her two pain pills which is more then usual to knock it down. Katy and Shailey watched a movie with us and we went to bed. At three o'clock she woke me needing some more relief. One more pain pill and then she slept good until 7:00.

Then things got really weird. She woke me up saying stroker, stroker. I was startled and asked her WHAT!!! She said she was having a stroke but just a mild one. You can just imagine how crazy she makes me sometimes. Then she said she was just dreaming and to go back to sleep!

%%$$%^^&&^%%$#@##$$. How do you go back to sleep after that.

Then at 9:00 she woke up and said she was really feeling good.

We had a bite to eat, came home the back way through Garden Valley, had a picnic lunch near Banks, and was home by about 2:00. Tonight she is really tired and has a little pain but I only let her have one pain pill for now.

So there you go. Baby steps, remember.

Some times this girl drives me crazy but she is a special gal and I intend on keeping her around for a bit.

You don't think she is making this all up to get back at me for all those years of her taking care of me????? NO!!

See you all tomorrow night, keep her in your prayers. RAZ

going to the cabin

ok everyone. I know it is early but Katy and I are taking mom to get her hair done and then we are going to Dads cabin for the night. Mom had a bad morning with a lot of back and head pain but she is up and we are hoping for a good day. thanks again for all of the prayers. See ya tomorrow night for another update. RAZ

What happened to the babysteps

Patsy tried to take a baby step today and stumbled over a toothpick. In other words, it wasn't a good day for her. The biggest problem that she had today was pain. Her headaches get her down and the pain pills keep her there. We had a nice dinner and she is watching a little tv before bed.

My daughter is here from Alaska and we want to go to the cabin in Idaho city tomorrow. We will see how she fills in the morning. Not much more to report, keep her in your prayers. RAZ

Its GREAT to have a good day!!!

Well, it is that time of night so here I go again. I don't even know if anyone reads this darn thing but I enjoy putting the journal together. maybe Patsy will find out and read it someday. HEHE

What a great day patsy had!!!!

It started off a little bad when see woke me up and had a really bad headache. I really have a hard time when she is hurting. But, she took a Norco and then later a couple of excedrin. By 10:30 she was up and filling really good. Katy was going to see Carol and Patsy wanted to go for a quick checkup.

Do You want to know what Carol said?????? Ok, here it is. Carol said that the treatment is working and that the parasites are dying but said that she had 7 more days and then the healing would start.

It might be awhile for the healing because she is going to need to rebuild a little in the brain. I guess it might be like a stroke or something.

She had a great day and Katy took her to Wal-mart for awhile and they ended up going to lunch.

Remember the little baby steps??? We are excited to see the progress.

If Patsy can stop the progression, we can deal with the time it may take for her to get back to what she was a couple of years ago. We plan to go dancing next Valentines Day. If you are a betting person, that is where I would put your money. Goodnight everyone RAZ

I guess it is that time of night. So here is patsys report.

After I signed off last night, Pat did about 1 1/2 hours of paper work. That doesn't sound like much but for her to be able to concentrate that long was wonderful to see. It has been a while. She then went to bed and took no pain pills, only a couple of excedrin pm for the pain from her fall. We both had a really good night.

Today started out with breakfast and then off to church. She was trying to lead the choir before church in practice and started to head for the floor and I caught her. She was able to finish practice.

So, I decided to get a chair and sit right behind her while she led the Choir during the meeting. That was strange holding her up while she led the choir but it worked and the choir was wonderful. I wished all could hear them sing sometime. Not your everyday choir and the people love her talent. I brought her home to rest and then went back for practice. She was really tired and practice was not very good.

We came home and she went to bed. Now some more good news.

After a good rest, pat got up and got dressed and we went for a sandwich tonight and she fills really good. She has now been pain free for two days and she is up watching tv.

Baby steps but still steps in the right direction.

One final note. 15 of our 19 grand children were in church with her today. How can you have a bad day with that many love ones around you.

So keep Pat in your prayers and we will prove the Doctor wrong. Thanks again for your help and prayers, RAZ

Well, here we are again. Things went really bad last night because patsy is such a bullheaded *&$%#@@. At midnight last night she decided to go to the bathroom without waking me up. She crashed and hit hard. I woke up when I heard her go down and ran to her as quick as I could. She hurt her back and put a bump on her head. After a few tears she went back to bed. I told her again that she was to wake me to help her and that next time she did not do so, I was going to KICK HER ASS.

So today has been a normal day. Other then dealing with a few new pains, she has had not much change. Dad and mom came over today and Ranae stopped by for a few minutes. Katy was here with the baby.

It is about 5:00 and everyone is gone, Patsy is up and dressed and watching tv. It was a beautiful day and we are happy for everyday. I am watching the grandkids while Marty and Theresa are off to a movie. I will cook for them and Patsy and then we will call it a night. Thanks for checking in on our little story. RAZ

The Rest of the Story

Ok where do I start?? First thing I want to do is to let all of you who have sent some money to help us out know that you have made a big difference in our lives. Up until about 3 weeks ago, I was able to work and pay the bills that we have which is not that many. Then things changed and it got to a point where I was afraid to leave patsy alone. She has a hard time going to the bathroom without help and showering and cooking became impossible for her.

Then one morning while trying to get her up to go to the bathroom and to eat some breakfast that I had cooked for her, Patsy had a seizer and she collapsed on me, I caught her and was able to lay her on the bed. With the help of Theresa, We were able to get her to the hospital. After several hours, it was decided that the best place for pat was at the St. Als hospital where she could get to the neurologist that she needed to see. After three days and a lot of tests and a MRI, the Dr gave us the news that Patsy has CJD disease. As everyone knows, this is an incurable disease that gets worse and supposedly fast.

So, here we are. Pat has been the center of my life since the day we got married. As I have now learned (or learning) to cook, and clean, and do laundry (I am embarrassed to say that I did my first load of laundry ever three weeks ago), I have also had to consider how things could ever go on with out her by my side.

So, we decided that we would do what we could while we can. But the first thing we did was to go see Carol. Carol is Pat's kineseoligist (not sure if I spelled that right). Carol tested Pat for the disease that the Hospital said that she had and told Pat that their diagnosis was incorrect. While she agreed that she is having brain problems, she says that the problem is a parasite in the spinal fluid and that the parasite is a single cell protein that is causing the problems Pat is having. She says that we will kill the parasite and then the progression will stop and the healing can begin.

So I started the first treatment Wed night. Corny as it may sound, we have mixed two essential oils together 50/50. The oils are Wintergreen and Sassafras. This is a very strong mixture. I relate it to head lice and the way to kill them is often a real strong smelling shampoo or treatment to drive and then kill the lice.

So here we go. I put the first application of the oils on patsy's tail bone Wed night at 9:00. She went to bed 45 minutes later and then all heck broke lose. She started talking about all kinds of things and none of them made any sense. I got really scared and didn't know what to do. It was like she was stoned or something and I didn't know what to do. She finally went to sleep but I didn't. I stayed up for hours just watching her hoping that she was okay.

Thur. I applied the solution on Patsy again at 9:00 and then cooked her a good breakfast. The first thing I noticed was that she ate everything that I cooked for once. Maybe my cooking is getting better. I had a meeting to go to in Boise and needed to leave at 4:00 and was surprised when she said that she wanted to go with me. We went to the meeting and had dinner and by the time I got her home she was exhausted, but she did go and we both had a good time. I did another application on her and then helped her to bed. No scary things happened that night. I was glad because I really needed the sleep.

Friday. So we slept in until 8:30 today. Oh, by the way, Pat has been sleeping good this whole time but she is always tired most of the day and spends a lot of her time in bed. I got her up and did another application at 9:00 today. I went in and started breakfast and then I looked around and there she was. She had gotten out of bed and walked to the bathroom and then came in to see what we were having to eat. I could not believe my eyes. I was so happy I shed a tear. I did not let her see that, but I was really happy. She wanted to go and see Leslie in Nampa before she went back home and I said I would take her if she wanted go. She told me that she felt really good and that she hadn't felt that good in a long time. She actually dressed her self without help and we went to Nampa. She did get tired before we got home and she did come home and take a nap.

So, as I close tonight, I want everyone to know that we are not sure what the future will bring but I can tell you that I promised pat that I will be here for her no matter what. Thanks to your help, I am going to make that commitment come true. We are very optimistic that we are on the right track with this and we are looking forward to every day that we have together. She is planning on leading her choir on Sunday, there will be a few tears shed that day as she is so loved in our ward and stake.

I will be putting an update on here everyday to keep everyone up to speed on Pats journey good or bad. Keep us in your prayers. Thanks for you help. RAZ