Margm

I learned a long time ago that my training into the words of the medical dictionary were just words. I would keep myself in an anxiety state because I would read up on the things that concerned me, or my family. Sometimes I would get very scared. I have not read up on my daughter's illness to any great degree, only hearing from doctors when I would be with her on visits. Unfortunately, I did read up this morning and the tendency to have them come from birth. I have Factor IX blood, which is the same as Queen Victoria had. She had many children and the female were carriers of this blood disorder but the son's were the ones who would develop hemophilia and they did not pass it on, usually dying of an injury where they bled to death. My daughter has Factor VIII, (also called von Willebrand's) which I believe I handed down to her and she has had many illnesses with this. She scratched a mosquito bite once and I had to keep my finger on this tiny imperfection all night because it would spurt blood without stopping. She has to be given Vitamin K (I think it is) before any surgery. I have had two children, numerous minor surgeries and maybe major also, but never had a bleeding problem. Kelli cannot pass this down to any other children because of the dermoid cysts on her ovaries and having them removed. Incidentally, they are no longer called dermoid cysts, I believe the medical name now is a "teratoma." My Factor IX was found when I was hospitalized in 2014. Never knew I had it and the hematologist was so excited that he had found this. (You have to know doctors, if you have something strange, you are a celebrity to them). A common cold or flu is just that......common. Kelli also has diabetes (which we do not have anywhere else in the family) from a psychotropic drug she was given (agreed upon by her doctors). My son did not develop hemophilia, which he could have had easily, but he has an X chromosome that protected him. And, with all this medical jargon, I am getting into a world I left behind a few years ago. My cousin is the genealogy expert in our family and has traced us to Anne Bolyn, so the first Queen Elizabeth would be in our ancestry also. Anyhow, she cannot trace any of our ancestors that would have handed these maladies down, so perhaps I am lucky to have lived so long, but somehow, sometimes, do not feel lucky. Sorry for the long treatise of our medical history, but I have plenty to worry about, as do we all. It seems strange that something as simple as a "teratoma" would be so life threatening, but my daughter has not had an easy life having inherited my genes as well as two grandmother's, one grandfather's mental genes.

Kevin, she has been plagued with something called dermoid cysts since she was a teenager. She had to have both ovaries removed because of them. Billy had what we called lipomas, which were probably the dermoid cysts also, but his were never internal. She had about six removed from her back, she and the doc thought they were lymph nodes and I think somehow it got them started again. Anyhow, she developed three on her brain, one on her kidney, which ordinarily is where these type of cyst/tumors grow. They are not cancer, but are treated as such. She went to The Cleveland Clinic to have proton beam radiation to the ones on her brain and I do not think can have anymore so they are trying to shrink these with chemo. I know it sounds like cancer, but they do not metastasize like cancer, she just develops new ones or the old ones grow, and they can be lethal, so she is in the fight of her life. So we are fighting tumors that are not cancer. Billy never had anything done with his "lipomas" so they did not bother him. Kelli has always (because of being a nurse) wanted everything examined and either removed or treated. That might be good in some cases. And we are very worried. The living situation is such though that her daughter goes to school down here where her mother started her.

Billy had a good heart. He shaved once back in the 1970's and I told him to grow the beard back, he looked naked. He was not old. His beard was mostly gray with some white, some dark blond in it. He will always stay the same. For some reason I am blocked. I cannot talk to him. I miss that. I could talk to the moon and I was talking to Billy, the clouds are all hanging dark, gray and fluffy white, and I cannot talk to him. He always was worried about getting fat (he did once), but he knew I liked tall and lanky so eventually the only fat he had was between his ears. We looked like "Jack Spratt could eat no fat, his wife could eat no lean." I miss him.

“I am woman, hear me roar.”― Helen Reddy That was my mama's favorite song. So, I was waiting for this burly mechanic and along comes this tiny wisp of a girl, young, and I tell her "I don't even know how to open the hood." No problem, this little very feminine mechanic knew what she was doing. (She made this ole woman feel like a twit). This is not a picture of her. She was even smaller. I was so proud of her and I felt like an ant on the sidewalk standing beside her. Such a sweet thing. But when I let it idle it smelled sorta like motor burn and they had asked me to bring it on into Toyota (they are so good to me), and they checked it all over and Ferris Yaris was doing just fine. I felt like I was waiting for a patient sitting in the waiting room. They had a free drink machine, any kind of drinks and a peach or coke Icee, all kinds of coffee creamers, and of course Community Coffee. I got a peach Icee.

I am sorry for us all. Honestly, the empathy I feel is tremendous. And, like Autumn, (54 years for me and Billy), and with my health problems, I don't worry too much about the future. That doctor that gave me the antidepressant (a new kind she said), with me saying I did not want them, I think if I had taken more than that one, I would have left before I get to see Brianna get her education. I might not make it all the way, or any more of the way, but I don't need a damn doctor to hasten my slide. Just watched on the news this 93-94 year old woman trying on four dresses for her wedding and asking social network to help her pick one. She models all four. Right after that they told about two over 90 year old people that are getting married and he drives 100 miles each week just to take her dancing. I know most of you say "never again" but we all know, never say never. (I do say never), but this is happening to people in their 90's and we know our friends that find someone else, but somehow or other, some of us it just makes us angry to think of being with someone else. My two "girlfriends" who lost their husbands, they are my age, and they are having the time of their life. I'm happy for them and maybe if I start losing weight and putting on makeup again.............watch out. Addendum: You know in reading this I am reminded of a pastor we used to have. His beautiful wife loved makeup. She really didn't need it she was so naturally beautiful. Some of the gossipy women were heard though and that sweetheart of a pastor, in one of his sermons it led to him mentioning that "a little red paint never hurt any old barn." I don't think it was brought up again in gossip, but he was right, a little red paint never hurt any old barn.

Well, I would say I live in an honest neighborhood, and I really think I do. We have two law officers living here and also a security company employee living here. In getting my things in yesterday, can blame this only on myself, I have never done this before, not in the nearly 60 years I have been driving (not that I can remember, bless not remembering), but I left my keys in my car. Not only did I leave them in there, I left them in the turn on position. I have Toyota sending out someone to jump the car for me, no charge, although I am sure anyone around would have done it, but I got scared I might need a new battery, so I called Toyota. Sometimes it is no fun being the "man of the house." And, the picture below is wrong, I can still think of so many stupid things to do.

She has 5 more weeks of this chemo. It makes her bones hurt terribly. Steroids would help, but they give her seizures and she sure does not need that. Her hair is growing back in, but it is time for another course the 8th, so she will lose it again. We all worry about our kids, no matter how old they get. I know it is going to take some adjusting cooking for two boys. I don't cook, so Bri does her own cooking, but cannot right now. Also cannot really eat. She has been subsisting on the pecan Ensure Plus I keep for breakfast's. I think she is getting tired of that though. I might have to cook. Fixed her "mashed" potatoes, only I call them cream potatoes and she loves them, I use the mixer to get out any lumps. Life sure comes with its own lumps, wish I could get them out as easy as with a mixer.

And don't worry about what you say. Let it all hang out. I let it hang so low sometimes (now, I mean that sincerely, not jokingly) that I do have to go back and delete some of it cause sometimes I share more than I think I should. And, I do have that habit.

Gwen, honestly I don't discuss all this stuff I discuss with you all with other people.. I discuss it on here and sometimes it turns into a chapter in a book and I know people think "oh no" but see, you do have someone to discuss this stuff with. HERE WE ARE.

Beautiful. Somehow or other I understand. When I do the things Billy didn't care for doing, like going to musicals, it does not hurt as much because he would not have enjoyed it.

Gotta add, when we first started traveling back in the 90's, there was a woman about 84-years-old that had a huge, John Deer Green, ancient Class A RV. She would drive into camps and the managers would park and pull her out when she was finished. I know she has gone to the happy campground in the sky by now, but on the back of that ancient hand painted RV was printed in beautiful writing "drifting snow." That was her last name. I quit my membership to Escapees though and don't know what happened to everyone. It was mine and Billy's dream and I was not "man enough" to carry on alone. It would have hurt like visiting the place he left me.

I am, in a distant sort of way. I think Steve mentioned her but I knew about her before that (foggy brain cannot remember how), but we traveled extensively in the Escapee Park system and I met a lot of people. RVing was our happiest time to live. I think the last I heard about Alison Miller was she was supposed to put his ashes certain places and she could not bring herself to do this. Our little RV was only 23 feet, but I could not handle putting the sway bar and hookups and these women have my admiration. That was Billy's plan for me or him, to travel alone to the places we planned on going. You see what I did, I ran to a place he would not go and I cannot imagine the pain of traveling to places we planned to go together. I am rather strange. (I'll bet you picked up on that.) I am going to go read her blogs again. I read RVSue's about once a month also, but reading hers was something Billy and I enjoyed together. I admire those women. I wish I could think of the blog name from this guy that travels by a cargo carrier he made into a home. He got so popular though I think he has sponsors now too. But, he showed different people just living on nothing, living in the Bureau of Land Management (which we don't have back in these localities.) That was one thing we did not get to do on our bucket list. I am going to put an addendum that will not help us at all. This woman, Alison Miller, tells it like it is. She is four years into this and these are her words. I didn't enter all the paragraph, anyone reading this needs to read her blog listed on Marty's list above. "How am I supposed to do this, D? Year after year? Yes, I’ve gotten through 4 years but what accomplishment is that when my heart is yet broken and I yearn so desperately for you, for your touch?" Alison Miller I know with my grandma at 18 years saying it seems like yesterday, we will grieve, but like this woman is doing, we will also live, like my grandmother did, we will all live, until we don't.

I feel a word salad coming on. Might need a shovel. There are so many on our forum going through changes, good, bad, worse, impossible, movable, and sometimes finding out things about ourselves hurt, but you have to put on your big girl panties (I got a bunch of them) and just accept things for now. As I realize I am no spring chicken, I might not have time to "find myself" as my friend suggested I should do. The little verse under that statement is "I ain't looking real hard for me." Got too many things shoving me along. Bri's little surgery came out great, but she is still in a great deal of pain and as she suffers from a little hypochondriacitis (like her Mamol), she will suffer some. She hates to see blood, and I don't like it either. (On myself). I can handle it otherwise. My kids left me and Bri at the motel before we left. I had such mixed feelings of being abandoned, feelings totally adrift, but Bri slept the 168 miles home (no stops, made it in three hours), but had a lot of time to think. I don't remember talking to Billy anytime I was up there. Then it hit me the reason that beautiful resort city terrified me so. I almost died there and Billy did die there. See, I said that terrible word "die." Down here in LA, Billy and I both worked. Sometimes the nature of my job, I was needed at different hospitals and sometimes I worked seven days a week, some evenings. Other hospitals used us too, when needed. Anyhow, we spent the first 36 years being apart for long lengths of time. When he retired, I retired on the same day, but I could not stand retirement and went back to work, but they sent us home to work so Billy and I were together 24/7. I never was the type of wife that when he retired he got in my way. We were joined at the hip 24/7. So every moment while we were in that beautiful vacation paradise, we were together, all the dirt roads, all the little creeks we found to wade and fish, and when I went in the Walmart on Central it was remembered I bought his blanket and pillow for his chemo, passed the Cancer Center, and also the hospital. I tried going to the other Walmart but that was where we grocery shopped. In fact, there is not a single place in a hundred mile radius (maybe more) that we have not walked. (Some even in the neighboring forests of Oklahoma.) I missed Billy so bad the hurt was a constant ache while I was there. Even the oral surgeon was the one Billy and I had went to at the last. (For me). I did not see how I could ever be happy again (still don't), but the pressure in AR was so great on my heart that coming back to our old home, I could breathe again. This is where both of our roots are, even to the first settlers and a city being named after an ancestor. It is not as pretty, I am not happy without Billy, but somehow or other he is not dead (see, I said it again) here. I know, of course, that he is, but you know.......he just might be at work, or I might be, but we were not together constantly here. Well, it made perfect sense to me figuring it out coming home. Kevin, I googled Hanna and I hope it is a place that you enjoy. You Canadians have a few things on us USA people.. For one thing, I would not hang Trump's picture up on my wall and I think I would put Justin Trudeau's picture up in a half dozen places. Hey, I realize he could be my grandson, but he sure is nice on the eyes. Seems like a good fellow too. Sure have lost a lot of sleep in the past few days. My daughter has to have chemo for the brain dermoid tumors. Not cancer, but will grow bigger. She cannot take steroids so she suffers a lot of pain with the chemo. The nights she stayed with us she whimpered and moaned often. My son is up there with her (he is in the RV at their house), and her partner jumps at her every whimper. Very worrisome though. We all worry about our grown "kids." Heard also from my grandson. I heard he really looked bad. He does check in with his PO (not sure what that is), but his little brain has been fried from every drug imaginable. He has crossed over sanity although they say he does not use anymore. The damage has been done.

I grew up in one place, never moving. My nomad blood boiled in my veins. Billy and I moved every three months when we first got married. No furniture, just household stuff, but then Scott came along and we spent over 17 years in one house (put two new roofs on) in a part of the city where we worked. Kids went to one school with same classmates, like I did. We both were terribly unsettled and had to make ourselves be still when "hitch itch" affected both of us, but for the kids we had to stay still. Believe it or not, I suggested to Billy us visiting the National Parks on our senior pass and camping in a tent. Billy could not believe I was into that because he was Jeremiah Johnson in his mind. Of course, God said we were not meant to travel together anymore, but camping in the great outdoors (with Billy), was what I wanted to do. There is a retired school teacher who travels the west, top to bottom, in her little Casita trailer and van. She is called "RVSue and her Canine Crew." She is a loner, has a great blog, and answers all blog replies, but she openly will tell you, she wants no company, leave her alone, etc. There is also a group of loners who pull storage trailers behind them they have converted to living quarters, and some of these conversions are rough. They meet up occasionally in the different state and national forests where free camping is allowed. Most of the free camping is Bureau of Land Management, and is out west. I've never done it, but I wanted to. (with Billy). I know Billy would be back in the forest somewhere if I had gone first in the RV. All you need is a vehicle and when you get to one of these camps they can tell you how to do things on a 0 budget.

I don't think I have ever regretted it Kevin. I had to return so Bri could have her oral surgery, and I have had the scar tissue torn away no matter where I turn. In a motel on the lake. My kids live here with their partners, but my partner left me here and it is not home anymore to me. I have not even called my friends. I will go home tomorrow. Bri did great.

I'm so sorry. I for once am at a loss for words but will pray with my mustard seed faith.

And like the Phoenix you shall rise again. Beautifully written.

Kay, I always know I am a moment away from falling. Used to could roll with the punches, cannot now. My sister tripped on a blanket she was carrying to the washing machine, hit her body and head against the door facings, concrete floor, and chairs. When we were younger we imagined jumping right up. I know I did sometimes, but now falling is a slow motion o-o-o-h n-o-o-o. You feel yourself falling and somehow you cannot even protect your head. No matter how hard you try. Your instincts are so much slower. And, I tend to just sometimes drag my sneakers and can fall just walking across a tile floor. My sister did not tell me because it worried her so much and she "waited it out" the hitting of her head. Picking my feet up high enough now seems a problem. Maybe they are just telling me my behind is too big to carry. I hope your mending is fast. I was carrying things out to the car night before last, some things my son needed but had left here. Brian, one of my neighbors took them out of my hands and said I should not walk the steps in the dark, so he carried them. I have good neighbors. Know I would be heard fast if in distress. And like I said, Billy would never live in an apartment. Strange, we were so alike yet so different. He would be by himself in the woods in the RV somewhere. I loved the peace and quiet with him, now crave life, voices.

George, you, Kevin, Brad and Steve give us hope that we might accept this world we live in, even if we don't like it. We have some new fellows on that are gonna chime in also. And our women, they are such fighters in what always seems like a losing battle, but they fight on. Inspirations everywhere.

Kay, my middle aged "children" and "elderly" sister give me more cause to worry than my 17-year-old granddaughter. And, I go to sleep at night, my bed looking at the big cross at the foot of the bed on the wall. I don't know if my prayers go any further than the cross on the wall, but that is all I can do. My son asked me why I still let people boss me around and I had never thought about that, but I have always had someone to "lean" on and now I have to do it myself, with other people leaning on me. I try to make it stop in a gentle way because the anxiety will kill me for sure. I keep thinking about the young girl I worked with that lived in a neighborhood that had gunshots each night and it was terribly dangerous. I asked her how she felt about leaving her tween-aged children alone and she told me when she went out the door she turned them over to God. Now, that is faith I really need.

Me either Gwen. Too much history on the other side of the bed. Maybe I need to buy myself a twin bed. That really sounds like letting go. Our bed is one of the old fashioned king size that is huge. It is old. I have a soft cover over the mattress. Maybe I need to let it go. When I took the Ambien I would get two hours sleep out of one pill. If I am tired my clonidine and one Xanax will usually do for the night. If not, I have fractured sleep (but not for long), I get up and take two Dramamine and sleep four more hours. It happens fast. I want my mind to be still. I know it is not natural sleep, but maybe I don't want natural sleep, maybe this kind of sleep wards off the demons.

Tom, I medicate my sleep. My dreams are amnesiac. And, this is terrible, but if I wake up at 3:00 a.m. or 4:00 a.m. I take two Dramamine. Then I get four more hours sleep. I do not recommend this to anyone. My mode of sleeping does not really make me feel rested. When I was in the hospital my night nurse shared with us she had to stop at Walgreens to get her Dramamine. She worked 16 hours and needed to fall to sleep fast. I do not know long range difficulties with my medicating, I have tried going to sleep with a meditation app. I have so many of them. I have counted my breath so many times, relaxed from my toes to my ears, but when it comes to closing off my mind, it won't close off, it is Billy. When I wake up in the morning I never lay in bed enjoying the big fluffy comforter, the warmth, I get directly up or my mind will think Billy should be on the other side of me. I know it is not the way to do things. I do know it is wrong. And, I am well into my 19th month. So far I sleep, I dream and remember I dreamed and can remember telling myself, this is not real, in my dreams. In my past life I would have used prayer. I wrote chapters of books in my mind. I would either rewrite or write another chapter when Billy was sleeping next to me. I never put them down on paper, but I lived the chapter I was writing. I cannot do that anymore. I wish I could.

Kay, my mom and dad fussed all the time. I cannot remember very many times when they were not fussing, mostly about money. When she was in full blown dementia, she would remember her sisters and said she had five husbands. Well, I had one, but just like me, there were many personalities in that one that grew different with age. (Myself also) The last thing I will remember of my mama is in a moment (only seconds) of clarity, she looked up at me as my mama and said "it's hard isn't it" and then she disappeared again. But, I saw my mom for the last time in that moment. She outlived Daddy over 30 years. In her beginnings of dementia she would fuss with her sisters all over again. (They had all passed away years before. I sat with her body after she passed and told her to tell Billy how much I loved him and I was sorry I was not holding him as he passed. But, I never cried for my mama. I did cry after that one instant recognition of loss that she gave me, and that was the last. Dementia, Alzheimer's is a cruel lingering calamity. One funny moment I wish I had on video was my mom and her oldest sister (the only ones left), and both in their late 80's. One said something that made the other angry. She stopped the car on this highway and was going to get out and whip the other's "behind." A lifetime of fussing. I used to try to drive those two around, sightseeing, and they never saw the sights, they spent the whole time fussing.. "Driving two Ms. Daisy's"

I hope I did not get into someone's business reading that book. Billy, my son and my granddaughter would get so peeved at me if I let the ending of some show out before they finished it. I'm the type that wants to know what happens before I watch a movie and if I cannot finish a book soon, I will read the last chapter. My mom did the same. If the book was good, I'd go and finish it. One movie I came in on four times before I saw it from beginning to end. "The Usual Suspects." Kevin Spacey. And, it was a good movie. The money that fellow makes from the book sales goes to something that stops human trafficking and I feel guilty about telling about the book now. Oh well, just add another one on.

So do I Gin. Thanks Kevin. I talked to Billy today. It is strange, when the clouds hang low and are heavy gray/white, I can see Billy, and I did talk to him. No magic revelations, but I was not expecting them. I saved this poem.