I’m really trying to keep up this journal writing. I had such a spiritual witness that this is important but I have not made it a habit yet. I hope the Lord will help me as I endeavor to do as he instructs me to do.
As I sat and read through her journal for the first time last night it was really interesting to see her symptoms begin to show up and how she handled them. It was really hard for her to accept at first. Once she got to acceptance she never looked backed or wavered but that took time and a lot of faith. Ive gone through and copied out the parts of her journal that are in regards to her health and also some of the steps we took while she was being diagnosed to be prepared just in case she was diagnosed with ALS.
It also once again illustrates just how fast her disease went. These entries cover 4 months from start to finish. Its sobering to think that 6 months ago yesterday was the day she was diagnosed.
Tuesday, 1 Jun 2010
After reading my scriptures, I went to get out of bed and I fainted! I think my blood pressure really dropped. I hit the phone stand with my lip and then on my chin, because I have a whopper of a sore cut lip and the inside of my mouth feels like someone has set it on fire. Ugh, it’s uncomfortable. I bled quite a bit too and had trouble brushing my teeth. I don’t ever remembering fainting before and I was just out for a few seconds, hurting myself brought me back awake.
Thursday, June 03, 2010
I woke up this morning and was thankful that I live in a peaceful area where I am not afraid to be by myself. I felt a bit of weakness though, I ate breakfast of Oatmeal and flax with berries and then I went to Physical Therapy, I drove to be specific; I didn’t feel strong enough to walk. Don’t know why. I got there and started on the treadmill and I didn’t feel like walking at my regular pace, I couldn’t. My regular pace is a 5 hill, walking 3.5 miles an hour. Today, I did a 5 hill, but only walked 3 miles an hour. I do feel weak today and don’t know why.
I came home from PT and decided to eat something, and then I went and took a nap for 4 hours. I slept the day away! I must need it or my body wouldn’t make me feel like I need it. So I guess I shouldn’t fight it.
Friday, June 4, 2010
I am not sure if I am sleeping well enough or if my body just needs the extra sleep, but I wake up tired and don’t really wake up all day. I’m not taking Excedrin in the morning anymore, but I may have to start again if I can’t wake up. I took 2 naps today.
Friday, July 9, 2010
Today Larry and I went to the Temple. It was a good experience, however while in the Temple I experienced something that is disturbing to me. The left side of my body feels funny today, like its nervous, and I noticed that my left hand is shaking just ever so slightly. I have no control to stop the shaking either. I hope this isn’t the beginning of ALS or some other nerve problem. However, if it is, then I will wait upon the Lord, my God, to make me all I can be to finish my work here on the earth.
27 July 2010
I can’t deny I am worried about my health. It feels kind of like I have had a mini-stoke. My entire left side is so weak. Plus, my left nostril is stuffed up with mucus constantly. I can’t even pinch a clothes pin with my left hand or open a bottle top. I said something to Larry, but he doesn’t seem to worry too much. In fact I’ve been so worried, I feel somewhat depressed.
3 August 2010
After the kids left, I had one of the bouts of slurred speech. Larry believed me about the symptoms I have been telling him about. Tremors in my left hand, memory loss, total left side weakness and general confusion. This has been getting worse since June 1, when I fainted. Now, I’m not sure if I really fainted or had a mini stroke. I guess I will find out, because we went to the Dr. Today to get some tests run.
Friday, August 06, 201
0Today I had a brain MRI and a Carotid Artery Ultrasound. The MRI came back clear, but I can tell something is wrong with me. The weakness in my left hand and the speech slurring, isn’t getting better, it’s getting worse. I’m very tired, although I didn’t do a whole lot today. The truth I am facing now is that I believe I probably have Amyotrophic Lateral Sclerosis or ALS for short, we shall see what the Doctor says.
Wednesday, August 11, 2010
Yesterday was a good day, and today has been a good day. I am slurring my speech a little bit, but Tavia said she could understand me pretty well.
Thursday, August 12, 2010
Today turned out to be a good day, although I did wake up very weak in my left hand. Last night when I went to bed, and as I was trying to go to sleep, my right arm tingled and hurt a tiny bit.
Friday, August 13, 2010
Today we went to the new Dr. DeSilva. He is my new neurologist and he pretty much gave me a choice of problems I might have. 1) I might have an Auto immune disease that is causing my symptoms and 2) if it wasn’t that then it probably ALS. My dear Sister, Pam has an Auto-immune deficiency disease, but as she says “I have never heard of Slurred speech with this problem”. Me neither, so I need to face it, I probably have ALS.
Larry and I had our first good cry about this situation. I am just hopeful that Heavenly Father will allow me enough strength to have a great Christmas with my family one last time this year. We also discussed not wanting to be cremated and buried in Washelli like his parents. I don’t know what we will do, but we will figure it out. I love my dear husband so much.
Saturday, August 14, 2010
Today I walked and then we went to the Redlands Temple for a Sealing. Larry put my name on the Temple Prayer Roll. On the way home from there, I was sort of weepy but when we went to Marie Calendar’s for Lunch, I came out of the Bathroom and smelled my Grandmother Lula’s smell and I knew the angels were gathering to bring me peace until they take me home. How wonderful to have those sweet beings be close to me now. I really can feel them.
I’m so glad I have a daughter, I don’t know what I would do without her! I can feel her love and support and she wants to come home, just her to talk to me. We need to bond together and she needs to know how calm and reassured I am about dying.
Monday, August 16, 2010
Today I went and got the special blood tests taken. They have to send it to Massachusetts to be tested. It should come back in a week or 10 days. It will tell me if I have an Autoimmune disease or not and if not, then I have ALS.
Wednesday, August 18, 2010
My appetite isn’t real good, but when I eat, it tastes good to me, weird. I went into my office and cleaned it up a bit, answered emails and told Roger Porter that I might have ALS. Went into work at the ORFHC early to get a book done for the new girl. When I got there, I saw Lynne Horn and Don Garcia, I told them about me having ALS. Then I told Elna Katherman and Mike Dugan who are on my shift, and then Mr. Bock came in and I told him and then Tim Wagner came in and I told him. I kept up a pretty positive attitude, although sometimes I feel like crying. It was an easy night tonight, although at the end I was slurring my words and it was hard to talk.
Saturday, August 21, 2010
We drove to Ventura where I had a talk to give to the Ventura Genealogy Society. I did tell them all I had ALS. It was a hard talk to give because I can tell my voice is going fast. After the talk, we drove to LAX to pick up our Girly. Yes, Girly came home to be with me. That means so much to me. We cried and talked today, then Dad took us to go get some Pizza then to Border’s Bookstore to pick up a book called “Tuesdays with Maury”. It’s supposed to be about someone who deals with ALS. Lisa and I took a slow walk and talked some more.
Monday, August 23, 2010
The days are going by fast. Yesterday while Lisa was here, Mark and Lisa and Kam came over to help us set up our new equipment to start videoing me. I was really depressed yesterday about this disease. I cried at the dinner table in front of Mark and Lisa. I was angry.
Today is better, but I am still fighting depression. It’s hard to be upbeat when I want to sleep my life away. Lisa then took her good camera and took photos of most of the house and jewelry. She is so sweet, I’m so glad I have her now. Today Lisa and I also tried to do some recording on the video camera. We did it the first time and the mike didn’t work. The second time we did it the mike made a lot of static noise. Now we are trying it with just the camera. It’s so fun to talk and reminisce with Lisa, we have had a wonderful life together.
Tuesday, August 24, 2010
I woke up feeling better than I have for a few weeks. Dad and I went into the pool to cool off after our walk. Lisa and I did some filming and then we did some heirloom numbering so I can write on all the heirlooms I have in the house. She did a great job of taking photos of everything. Now she has to go home and I am a bit down. She has been a real joy to have around these last few days, but she has given me a list of things I have to do before she gets back in a couple of weeks.
Thursday, August 26, 2010
Today started out to be a great day. Larry and I walked. Larry installed the video camera on my computer and we talked with Lisa, Caleb, Davis and Beckham face to face. It was wonderful. Beckham finally got the hang of it and had a good old time!
I have worked on my genealogy program file a lot today. Will I ever get it cleaned up before I die? I wonder. My voice is getting weaker, and so is my body, I can feel it. Today I talked to Alice Volkert and Lorayne Mitchell about my disease and I was positive about the whole thing, but tonight, I pretty low. I’m going to go have myself a good cry.
Monday, August 30, 2010
Today is our 35th Anniversary. I also took my EMG test today and it was horrible! They shocked me and then stuck me with needles. Afterward, Larry took me to lunch at Marie Calendar’s and we shared a great meal.
Tuesday, September 07, 2010
I went over to the Stake offices with Larry to get another Blessing of comfort. Larry got one too. Why do I sometimes feel so unconnected with my Father in Heaven? I guess I just equate good things happening when we keep the commandments and that isn’t what’s happening right now and I just don’t get it! I know in my mind that bad things happen to good people, but that is just what happens to others, not ME! I pull away from His spirit when I know I should be hanging on for dear life. After all didn’t I get my miracle? I don’t have ALS.
Wednesday, September 08, 2010
It’s getting very hard to type now.
Thursday, September 09, 2010
Larry came home from golf and read up on my symptoms. He is looking at reasons why this affliction is affecting me. We have come up with the possibility of my anesthetic from my surgery causing my symptoms.
We had a good, clean dinner and then I went off to the Staff meeting with Barbara Renick driving. I could talk fine when I left. Beth pretty much gave the lesson and left just a small portion for me. When I got up to speak, I couldn’t! It was so embarrassing! I started to cry. I came home in a foul mood and cried my eyes out feeling sorry for myself.
Friday, September 10, 2010
I’m feeling way to sorry for myself.
Sunday, September 19, 2010
Lisa and John and the Boys left this afternoon to go home. I miss her already. She helped me so much to get organized or at least get a start on organizing my genealogy. I now have to do the photo albums and that is a real job. I don’t think I will finish before I die but I will try.
Sunday, September 26, 2010
Today was a very emotional day! I went to 2 wards and bore my last testimony in both of them. So many people have sent me cards and said some very sweet things to me, I feel like this is my funeral I am attending, only I’m not dead yet. A couple of the sweet sisters brought me flowers, I got a call from President Nile Sorenson telling me what a sweet day it has been and to top it all off, our Stake President came by to tell us how much we are loved. I am inserting my testimony below.
I am humbled and thankful for your prayers and fasting. I feel the strength that comes from on high from sincere prayer and humble fasting. I love you all. You have always been supportive examples to me.
Of course I come to bear my testimony today expressly because I am going through the last trial of my life. I couldn’t do this without knowing a real relationship with our Lord and Savior, Jesus Christ.
We do not know what trials we will be called to walk through in this life, only that no person is exempt from trials, that’s what we came here for, not to live in a place where we are rested and life goes along as if we were already living in Heaven, as I was doing before ALS hit me. Somehow I knew that was too good to last, seriously, remember how happy I was? Throughout my life I have had many trials, it started in childhood with a dysfunctional family that I was born into, but I conquered that with constant faith that the Lord was always in charge. The secret to getting through this life is to never lose faith. If you have true faith, you will never walk alone. And the only way to develop faith is through trials.
Faith is not a passive word either. Joseph Smith said that “Faith is the 1st principal in revealed Religion, and the foundation of all righteousness and that it is also the principal of action in all intelligent beings”. Elder Bednar said that you can boil Faith down into 3 words: Assurance of things hoped for (plant the seed and try to believe), evidence of things not seen (look for ways that your prayers are answered, even if it wasn’t the answer you expected or wanted) and action (pray as if you had no talents or bodies, turn everything over to the Lord and live to receive personal revelation). I have and that is why I will be happy through this trial and try to keep a sense of humor.
I KNOW God lives, I know He loves me, I know I must be a special Spirit to have gone through a lifetime of trials and finish that way. I pray you will all be especially blessed for the love and service you have given me and that you will strengthen your faith for the trials you will someday face.
Monday, September 27, 2010
Today was a pretty good day, my sinuses didn’t run as much, and my speech was clearer more today, but when I get tired, I slur. I had a chest CT scan today.
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