It was cold this morning when I got up so I put on a long sleeved shirt. I took morning meds and breakfast by tube. I set three pictures to Sam and did gas prices then went out to the swing. Wearing my long sleeved shirt I was too hot so I came in and changed shirts then started watching The Walking Dead. Amanda worked so after lunch I took a nap and woke up when she stopped working. I had a pot pie for dinner and evening meds by tube. I store the feeding end of the tube in my bra. I am on the last Walking Dead Season episode 13 and if I can stay awake long enough tonight I may finish tonight.
Saturday August 2
I had eggs for breakfast and 1 ½ cans for lunch and dinner. I finished season 3 of The Walking Dead then switched to Bones, watched 5 episodes of that then tried to find something better. The SSDI money showed up in my MN account and I got accepted for Aid & Attendance and the money should also go into that account in 15 days. I practiced hand exercises and tried to strengthen my injured arm. Tomorrow is another day to find a good series and spend another day in bed.
Sunday August 3
I stayed in my room except trips to the bathroom. I had two cans for breakfast and macaroni and cheese for lunch and chicken with mayonnaise for dinner. Amanda found all my shirts with stains, burns or holes and bought me all new ones to replace them. The trouble is she bought them on eBay where somebody bought them at Cheeptees, doubled the price and put them on eBay. I went to IMDB and listed all the shows and movies that I had interest in. I ended up watching Hemlock Grove. Tomorrow I have blood tests to take and glasses to get fitted.
Monday, August 4
Jaq and I went the Alina clinic for my blood test and glasses check. The blood test was unremarkable but I got a new, softer nose on my glasses. From there we went to CVS to get what I considered an empty bottle, but which Amanda considered a bottle filled with chemicals. Jaq bowed to my wishes, but also bought the chemical bottle to appease Amanda. From there Jaq ran home to get his pictures (why didn't he take them when we left for Alina) and I rode the fast route to St. Paul and the slow route back. I watched Hemlock Grove until my talking tablet lady arrived at 3:00 who I believe put in good word for me to get one. I had a can for breakfast, soup for lunch and cottage cheese with peaches for dinner and add to that two cups of half pudding half milk. No nap although I am writing this at 8:15 pm as I fall asleep.
Tuesday August 5
Amanda worked so I spent my time watching Hemlock Grove until Jonathan came and fixed my Internet. I did my gas prices at noon. I took a nap and Amanda woke me to go to St. Paul to get evaluated for a power wheelchair. I drove one down the hall and around figure eights to prove I could drive one and Amanda and Jaq said I did good I feel I dis poorly and can only get better. Again, we went down the fast way and back the slow way past mostly giant houses set of off the roadway, usually rising far above the roadway made up of all makes and models all nicely decorated with manicured lawns. Unlike where I live where all the houses have white or brown horizontal plastic siding ad it appears that one man made them all from two blueprints. I came home had had egg salad for dinner and watched two more episodes of Hemlock Grove.
Wednesday August 6
I stayed in pajamas and watched Hemlock Grove until Amanda's lunch hour then got dressed an fell back asleep. At 4 we went to Fantastic Sam's to get my hair washed and braided then we went to Big Target where Amanda bought for me Ramen Noodles, soup and other things to eat. We came home and I ate Ramen Noodles and finished watching Hemlock Grove. When I went to my table to get the remote to turn the tv off I fell and hit my head on the shoe rack but a little sleep and I'll be fine.
Thursday August 7
I stayed inside all day and started watching Once Upon a Time about noon. I didn't write last night because I walked into the bathroom, had diarrhea and vomiting and perspired profusely that made me want to lie on the cold, hard tile bathroom floor and made me think I was dying. I was so exhausted I went straight to bed.
Friday August 8
Today I went in my wheelchair with Jaq pushing down a paved path and through the woods and admired the backs of all the houses. I collected things along the way, leaf, 2 acorns, a flower and a fuzzy plant. Amanda took a picture and posted on Facebook. I came home and watched Once Upon a Time. Amanda gave my the essential medication until my stomach settles. My replacement shirts arrived.
Saturday August 9
Today Amanda reorganized my while I slept in her bed. My bed is against the wall which maneuvering much easier. Jaq worked all day as a photographer so Amanda and I were pretty much alone. I got a sit down shower this morning and the shower curtain came down on me. I had a can for breakfast, turkey pot pie for lunch and Ramen noodles for dinner. I ordered stick on Owls from eBay which are not like my old owls. Nothing happens until Tuesday.
Sunday August 10
I sat on the swing from 9 to 10 waiting for Mike to run by. He had earphones on and ignored us on the way down, but on the back stopped right in front of our house and collected his breathe. I waved and replied good morning. I watched Netflix all day and now I'm on season 2 episode 6. I had a can for breakfast, cottage and pears for lunch and macaroni and cheese with cut up hot dogs. My owls have been sent. I did a lot of broken wrist hand exercises.
Monday August 11
I drove to St. Paul with Jaq so he could deposit a check and so I could do some business and we came home the slow way while showed where and his childhood friends lived and skated and played with them. It rained the entire time we were gone. I came home and watched Once Upon a Time and if I watch tonight I'll finish both seasons. Taking suggestions on what to watch next. Tomorrow people are coming to evaluate this home.
Tuesday August 12
This afternoon at 3 pm the general contractor who does th plans stopped by to look at our house and draw up plans to renovate this house. Plans include an indoor or outdoor ramp, walk in tub, and a sink I can get a wheel chair under. I started watching The 4400 on Netflix. I had bare feet so slipped on the carpet and ended up sitting on the floor. Jaq both gave me my medicine by tube tonight and rescued from the floor. I started a pen pal relationship with Becky, the girlfriend of Paul and Pauline's son. Closing at 78 degrees.
Wednesday August 13
I had an appointment to get my feeding tube stitches out but Jaq took them out and canceled my appointment. I have buttons there also which are expected to fall off but when Amanda cleaned the wound with alcohol she shortened the time for falling off. Jaq fed me my morning meal via tube and he did it very slow which eliminated that suddenly full sick feeling I used to get. I am now on season two of The 4400 . I expect delivery of two electric wheelchairs tomorrow – where shall I go to test it out?
Thursday August 14
Two men brought two electric wheelchairs, one to keep for a week and the other until my own is delivered. Each man instructed me how to work the controls, and each one was different. With the first wheelchair I managed to run over Jaq's big toe and on the way back to my room I took out one door hinge which caused the entire door to come down. Now I have no door, but it's easier to drive into my room. I am now on Season 3 of The 4400 and Sunny came in after dinner to learn how to put medicine in my tube. I took no nap. My hospital plug lost its ground in the socket so Jaq, not having a properly labeled breaker box, shut the whole house down. The ramp to load the wheelchair into Tahoe arrives tomorrow.
Friday August 15 (Woodstock starts)
I watched The 4400 almost all day. I am now on Season 4. I had a can for breakfast, Ramen noodles for lunch which needed more flavoring and when Amanda went shopping she brought me a Wendy's Chili for dinner. I am very pleased with ice bucket activity on Facebook and I may stick around a while longer to see if a cure develops.
Saturday August 16
We went to Best Buy with my walker where Jaq bought a new camera for his job and as we were checking out I somehow myself sitting on the floor. It was like somebody from The 4400 has ordered me to sit down. Jaq picked me up quickly and after a brief shopping trip came home. I ate Ramen which I didn't finish and a lemon pudding but had can for both breakfast and dinner. I completed all 4 seasons of The 4400 and will find something to watch tomorrow.
Sunday August 17
I didn't do anything today except gas prices, watch Medium on Netflix, eat a can with protein powder mixed in a Wendy's chili for lunch and a repeat of breakfast for lunch. And I managed to insult Amanda. Oh, I forgot the pint of water and two puddings. Amanda feeds me well, and I don't know what I would do without her.
Monday August 18
I am on Season 2 of Medium. I only left my room to frequently visit the bathroom. Both Amanda and Jaq sat with me today and Amanda went out and brought me home something from Taco Bell that I had to have mayonnaise added to make it less dry. I did a lot of hand and arm exercises today. Today the hospital called to set up a date to change my feeding tube into a mic-key
Tuesday August 19
Today I took two naps and tried to do do mypoints but then my arm got sore. Manda came in and gave me Alieve. I am on season two episode 18 of Medium. I had a can for breakfast and dinner, lemon and tapioca pudding and mushroom soup for lunch. Jaq tried to give me water but gave up he made me laugh which forced up the mushroom soup I just ate. Tomorrow my ramp is coming late tomorrow.
Wednesday August 20
Today Amanda accepted the challenge from a neighbor and donated money and Casey dumped the iced water on her and Jaq took the video and posted to on Facebook. My 7' ramp arrived so my wheelchair can now travel although I wonder how they will get to the truck. I found when transitioning from shoes to socks and even bare feet my walking ability doesn't catch up. I started reading my new Nook book but until I get my next botox injections I don't think I'll be reading much. I had a can for breakfast and dinner and scrambled eggs for lunch and two puddings thrown in for calories.
Thursday August 21
I hung all day in bed watching Medium and at 3 pm Manda announces we are going to the volleyball game. I wore a pink Tartan short sleeve shirt and since the elevator was behind locked doors we watched from the level on. I stood against the railing for one game, then took a seat on my walker and looked at the ceiling to control my saliva. Fortunately Amanda had brought a whole mess of paper towels. Jack dropped Amanda and I at home and went back to get Sunny and maybe a friend. I had lemon and tapioca pudding, and mac and cheese with hot dog for lunch and cans for breakfast and dinner. The reason I didn't take the wheelchair was it was suppose to storm and I could picture Jaq trying to load the wheelchair after the game in the rain. I got home and saw my brother Ed's ice bucket challenge for ALS. It was the best one I ever saw.
Friday August 22
Today began at 4:30 when Amanda dresses me and brought me food and medicine. I then did my gas prices and got back in bed to control my saliva. I am taking botox injections and saliva medication and I still have to wipe mouth because I have too much saliva. Amanda took me for a walk in my electric wheelchair on the same path Jaq took me on, only in reverse and added a trip down to the highway and back up the hill on the way back. It was a beautiful day. I had 3 cans for each meal and added lemon pudding and coffee ice cream. Sunny put my owls up and Amanda stayed with me when she wasn't working.
Saturday August 23
I was aroused around 6:30, did my gas prices and saw Aaron's ice bucket challenge, had breakfast and when 8 am rolled around Amanda called Fantastic Sam's to make an appointment. At 8:45 I was loaded into the Tahoe and off we were to get my hair colored, washed and braided. Sometime around 3 I requested a pot pie with no crust. It popped out of the oven, I took the first small bite and began choking. Jaq pounded my back and Amanda seemed very worried. As she later said “To think I killed my mother by a pot pie” “Jaq came to give me dinner by tube and I asked if I would ever eat a meal by mouth. He said no. So now I don't have to worry about pushing the food around my mouth with my finger and drinking a drink that takes me an hour to finish. And the best part is, I can trade in Dr. Pepper wore nice clean water. Signing out at 77 degrees.
Sunday August 24
Today Amanda told me I was out of vitamins so I ordered more. I also made donation to the ALS Association for my brother and my son. I got tired of laying in bed all day so Amanda had Jaq bring in my wheelchair and I sat in that while Amanda laid on my bed. Sure enough, I had 1.5 cans each meal, with a lemon pudding thrown in. I am up to Medium 5-5. I have no plans all week. Jaq worked on getting the wheelchair into the Tahoe and declared it impossible. They are looking at more options.
Monday August 25
Today, after breakfast, and about 9:15 am I went to the porch in my wheelchair and read my Isaiah book. I came around 11 and and watched ALS videos until lunch. I ate lunch in my wheelchair then took a nap. I got back in the wheelchair and watched Medium - I'm up to 5-11 I got back in bed for dinner then back in my wheelchair to write this blog. They are going to charge the wheelchair battery because it's down to 77%
Tuesday August 26
I tried my bipap machine last night but I could not exhale. So I tried again sitting in my wheelchair but I still could not exhale. So I posted to my ALS forum but got no good answer. I was thinking about a walk with one dog and then Jaq came and offered to walk with me in my wheelchair so I suggested bringing Abby and he bought both dogs along. I got my wheelchair up to 3.5 mph. We dropped the dogs at home and took a different path and came out in the same place. All meals and a lemon pudding but after dinner I felt uneasy, and started seeing double. I have a feeling I am going to sleep early.
Wednesday August 27
I got up and did my gas prices and had food poured into my tube then laid down to let it settle. I got into my wheelchair and started watching Medium. Lunch came next, which I lay in bed for, and the respiration therapist came at 3 pm. He couldn't set my machine lower but he did leave me a mask that covers nose and mouth. I practiced with it as soon as the therapist came but I could only do it for two hours. Before dinner I felt foggy so I asked Amanda if I could go outside. She said not without Jaq's help. As soon as Jaq got back from school I went out the swing with my walker because the wheelchair was just difficult to get it outside and back inside. I stayed outside until 7:30 reading and trying to sing.I laughed when Amanda fed me dinner which gushed food up through the tube all over my shirt. I asked Amanda for a shower and she agreed, even though I am much weaker at night.
Thursday August 28
This morning my computer couldn't find the operating system so I spent a little over $300 on a new Dell with Windows 8.1 on it but only one monitor. As soon as I get a connector I'll have two. When my grandson comes Sunday I am going to ask him to take the old memory out of my old computer and switch it out for my new memory. I sat outside in the swing from about 9 amt till noon because it made me feel better. I don't feel well when I'm sitting up indoors. I fell fine when I'm either outdoors or laying down. Maybe it because I didn't get my two pints of water. I put my computer in spurts. I got one email in. I went back outside around 6 but only felt a little better. I hope tomorrow's different.
Friday August 29
I didn't watch Netflix at all today. I sat outside and read my nook, I got water dumped my tube twice. I downloaded a driver so my printer would work and I pet the dog, and I practiced with my bipak. Amanda bought some things for Casey's birthday and while Amanda and Jaq were out they picked up a vehicle that has a lift for my wheelchair. I guess the zoo is Saturday. Sunday is Casey's birthday brunch at a buffet. I guess I'll be stuck with applesauce, mashed potatoes, perhaps squash and pudding. I'm sitting here wearing a sweatshirt because I was so cold.
Saturday August 30
We left with me going up the ramp to the rented van and I landed in the right spot. We first went to Target where Amanda bought me new desk and a sports bra. I exited properly. We second went to Fawnderosa where we fed and petted and saw hundreds of animals. I exited the van properly and I maneuvered around the flawlessly. On the way out Amanda bought me a ceramic owl for my new desk. Next we went to a National park where there were no picnic tables so we got back in and I properly landed in the right spot and we traveled a mile down the road where there were picnic tables – lots of them. They picked up Subway and I was stuck with baby food and a can of tube food. As I said I was tube fed among throngs of people when there were picnic tables stuck in the middle of the woods. We didn't know that until we took paths and saw them. But all hell broke out when I loaded back in the landed back in the van the wrong way. To make things worse Jaq took control of the wheelchair and jacked up the hand controls and blamed on me. On the way back into the house I was scared to death because the doorway is small and there's a big hole with stairs opposite the door. I secretly figured to Amanda walker so she asked Jaq if it would be easier to get the wheelchair in the house if I weren't in it. So I used my walker to get to the bathroom while Jack got the wheelchair int the house and into my room. He came later and fixed the bent hand control. I was suppose to be sleeping but instead cried for an hour. To make matter still worse, Abby attacked a little dog his master was walking. She called the police and they came to the house meanwhile I had a long sleeve shirt on and a jacket before they decided to turn the a/c off. I tried to get the jacket off but eventually Jaq came in and helped me. I should be able to sleep well tonight.
Sunday August 30
Today was Casey's 18th birthday so 10 people gathered at a buffet for brunch. I had scrambled eggs with gravy, chicken soup, and orange juice. I had tube feedings for the other two meals. Afterward we all gathered at home and Casey opened his gifts. Afterward Jon worked on problem areas on my computer. Amanda put my desk together and I facebook messaged Mark Grenon. Amanda had a problem with that because she thinks they are in it for the money and calls a scam. I used my bipak for 45 minutes while I watched one episode of Medium.