Jan. 1, 1986... Mom made Cornish Hens again for just the 3 of us.
I enjoyed the dinner so. We watched the Vienna concert at night.
Jan. 11, 1986... I stay upstairs now, coming down only to have Mom wash my hair using the spray on the kitchen sink. The steps are such a drag, and I like being near all the things I need. I"m so glad I have the upstairs apartment.
I decided to get a color T.V.; Dad picked a 13 in. Sylvania with remote control. I love it. Dad installed an aerial today.
I ordered a lambswool mattress cover; it will cushion these bones of mine. I also ordered a book on decorating, 2 pillows, and a seat for my toilet that will raise me up about 5 inches. (I"m aging fast!)
Margaret came over with a lovely bouquet of 5 red roses interlaced with baby"s breath. I gave her 2 covered mugs for her birthday. It"s fun to order all these gifts for others. Scott wrote me a thank you letter for his Far Side T-shirt. I was so glad to get the mail.
I talked with Mom at night and blew out some more frustration. I get so angry when I think about people who try to restrict me through their high pressure persuasiveness. Just remembering past grievances evokes terrific anger. I feel so vulnerable and have such a lack of control anymore that anyone"s pressure is a direct violation of my inner self.
I don"t have the strength to fight; I get bent out of shape because if I did what they did, it wouldn"t be so easily forgiven. Why is it that people feel sorry for those who continually screw up their lives.
"It just ain"t fittin"!"
Jan. 24, 1986... I ordered a mini wash stand for outside of the bathroom, a neat basket and also Mom and Dad are going to see what is available in chairs and recliners as I"m having trouble getting out of my old green velvet rocker. We have ordered an egg-crate mattress for me; I hope it works.
Jan. 25, 1986... Mom and Dad went out and looked for a recliner; they found a great one at Banworth and Udelhoven for about $400. They brought home a photo and swatch to show me. I decided it would be fine and they went back in the Chevy truck to pick it up. It looks great in my room and is "Oh, so comfortable." It"s a wall-away and won"t need to be "out" so far in the room.
I wrote to Todd explaining why I have such a distaste for phones, and do not wish to have one in my room, my desire to be alone more, and my hope that he will not be so troubled over these things. Sharon does come, I know, but we have been close now for many years; Todd did not come home but once or twice a year after finding work in other areas.
He gets so upset about my illness (its incurable nature); he calls doctors all over the country to inquire concerning various treatments.
I hope this will help him to accept my situation.
Jan. 26, 1986... I had another dream about Norm; I recall I sat in his lap and was worried I"d be too heavy. I was so happy to see him.
I went to sleep with the T.V. on; I wakened at 4:00 a.m. and turned it off. I was down today; so tired and weak. This contributes to depression. After crying a bit and talking to Mom I felt better.
More and more I need to be free of visitors. Dad came up later and we talked, which was real nice.
Jan. 27, 1986...The egg-crate mattress and the high toilet seat came today.
Feb. 4, 1986... I"m feeling pretty good these past few days. It"s a welcome change. My dreams are so horrible, though. I almost wondered if I"d screamed aloud. One was about rodents that were attacking me and biting my fingers.
I sent for an oak T.V. swivel; it works great. I"ve chosen more of my slides so Dad can take them in for more prints.
Mar. 5, 1986... I"ve written through my high school years and now I"m in the anorexic stage and Black Hawk College. It"s so hard to work.
I"m either too tired or so uncomfortable. My mid-section is huge. It hangs below my bikini underwear. When I sit I must be so straight or it"s uncomfortable. Sleeping has become more difficult, also. I get up twice or more most nights. . . sometimes to go the bathroom, other times my hips hurt (I"m so thin), or my ears pound until I sit up and swallow. Sometimes I can"t breathe and have to get up and position my pillows on an incline so I can breathe easier.
Mom permed my hair again. It gives it body. I can use the curling iron in the morning if it"s needed. I feel better about my looks when it"s this way.
I haven"t written in my journal for so long. Valentines were abundant.
The wall behind the sofa is complete; I"ve 4 photos ready to hang when Dad gets the 9" x 12" photo of the shack in the Smokies. I have finished putting my other photos in an alb.u.m; at least they are no longer loose.
Mar 29, 1986... Dad and Mom installed the air conditioner in my room.
(It got up to 78 degrees!) They"re putting the other one in my living room window. For awhile, I was afraid Dad was against the idea and it sort of choked me up because I began to think I"d be enclosed in one room for the next five months. It wasn"t a great thought. Last year I could get outside and roam around. Now, it"s being upstairs and that"s about all. I felt stupid; I cry about the least thing anymore. I"m so weak, I lose control easily.
I"m going to work on my quilt, so Mom set up the portable Singer on Dad"s high machine shop stool; I"ll sit on the bed when I sew.
I"ve been taking Lasix 4 times a day; it seems to work better that way.
I take the Aldactone in between. It"s difficult to walk. When I sit, the water drains into the current position; when I get up, it feels like my skin will rip.
I had problems sleeping until we put pillows under the egg-crate mattress so I was propped up on a steep incline.
I couldn"t breathe before.
Mar. 31, 1986... A great day, (AMAZlNGLY). I worked on my quilt for a little while.
May 5, 1986... It"s been a long while since I last wrote herein.
I guess I didn"t find the energy and the will to do it before now.
Days are often so much the same.
I had a few physical set-backs through the months; one "flu" episode nearly had us digging my grave. I really wondered if that would be it for me and this world. I had to get the elevated (frame-style) commode from Bev Verstraete. They had purchased it for her father.
It was awful. I was so weak; I couldn"t get up from the toilet; even with my raised seat. I tried and tried, but Mom had to help before I made it. Even with her help, getting up was nearly impossible. I was so scared. It had been getting progressively more difficult; I guess I saw it coming, but it"s still a blow when it finally happens to you.
It"s so demeaning. I kept wondering what would"ve happened if I couldn"t get up and was alone; but then, of course, I"m not left alone anymore.
I lost a lot of weight; my face is just skeletal now. Every time I get a "bug" I lose more strength and can never fully regain it.
The thought of total incapacitation is rather horrifying.
It"s bad enough now.
I have accidents in my undies, because sometimes I can"t walk fast enough to get there, and have no b.u.t.t to pinch the r.e.c.t.u.m closed and hold it back. It"s never major; just a spot, but I hate it just the same. I wear a pad for security now.
The 4 Lasix and 2 Aldacton daily don"t really do the job. By evening I can hardly breathe, so I can no longer recline in my chair. Dad has made a high platform and secured it with screws so I can just turn from my bed and sit down. The porta-potty is across from it. My world is slowly closing in. The water presses both my heart and lungs causing my heart to flutter from the pressure. Sleep has been difficult of late, I have to sit up on the edge of my bed for a time; then I lay down again. It"s better by morning.
At least my foot is better; it was hurting like crazy... I must have hurt it due to water retention (?).
Every time I lose more health it"s like some big milestone has been crossed. First it was the overheating, then going to the bathroom restricted the daily walks and other outings; then I had to remain upstairs... then the toilet... and on and on. Each time was such a defeat. I cried about having to stay upstairs because I wondered if I was just "throwing in the towel." Then I cried about not being able to get up from the toilet because it scared me so!
May 19, 1986... Last night Mom and Dad brought pizza upstairs. It was nice. Sharon came for a Sat.u.r.day bus excursion to a shopping area near Chicago. Mom, Sharon and Rosalind all went. Mom brought me a towel for my wash stand and a nifty wall basket with a lid.
Sharon"s going to be coming more often; I"m glad. In some respects, she"s like a second mother, yet different too. We share ideas and interests and can talk well.
I"ve been awfully fatigued lately. All day I can barely keep my eyes open, and writing is an incredible ch.o.r.e. I find myself nodding in the middle of thoughts; it"s very distressing when I consider the time limit imposed on my effort drawing closer as the days fold away...
naturally, my life has a hesitant grasp on time; I do wish to finish my literary endeavor.
Sleep at night is difficult, which does not sound logical after the fact that I fight to stay awake during the day, but so be it. It"s not mine to ask "why."...
June 24, 1986... Such indignities. Dependency shouldn"t have to be one, yet it is. And the strange thing is that I feel I am losing myself... slowly... as life trickles from my body, but still, with all that has been and will be lost, every so often I catch a glimmer of myself... in a gesture, a smile, and realize that the core is intact despite the withering exterior. Perhaps the core is that undefinable part of oneself that lives beyond earthly existence.