Not sure where to start tonight. I guess I should have journaled last night but was too tired. I feel like my brain is in a fog and trying to keep things straight. It's like the rest of me is doing okay at times but can't get my head out of the fog...I feel journaling is helping as I go back and read it again. Some teariness and smiling, too but mostly waiting and trying to stay in the moment.
I had errands this morning and he said he was up to going. We went and got him an inexpensive mp3 player so we could do a playlist of Country and Western, maybe Big Band music too...maybe some other music he likes if its on a CD...Then stopped to check the mail and no check yet from workers' comp or a letter. He said we'd have to put a call into them and find out where the letter is that Human Resources has...to which she gave us a copy of it. Then we went to Smiths to get refill on his pain meds. It wasn't ready yet so we went through the store to get some groceries...we didn't even get one third of the way through and he said he was getting too tired and weak in the legs. I told him to go sit down and I'd finish up and get the Rx...came home and had lunch and he went to sleep.
I was right about last night he was up shortly after I got off here but he didn't stay up very long...since all of this has happened the lights on the frig door are left on and the tv in case he can't sleep then he can watch but also be able to see without turning all the lights on which can sometimes wake me up. You don't close doors on me unless I do it...I guess this all came sometime after having problems with my lungs. Yeah, I know I'll get to that soon enough...
As I'm sitting here listening to "Enigma" music...soothing, passionate, desirous, sadness, innocence, tearful and more...as I journal. One of my favorites is "The Piano"...I sometimes have this vivid imagination and did with both my girls when they were little and growing up...I would describe in detail a picture for them to see in their own mind and sometimes I still remind them of it...Like this song in my mind makes me feel like I'm in a floaty dress and swaying, swirling to the music and stepping around him...omg...get my mind back here...
I use to work for an oilfield company in Wyoming as an office manager to do billing for the oilfield rental tools that Oil companies used to drill for oil or when tools got stuck in the hole and the fishermen...not the fish you eat...lol...it's a term for an experienced person who got the pipe, etc out of the hole that was stuck...it's been many years since doing that and don't remember half the tool names....I have to say the one thing I hated most about that job was the smell from when the welders when they were welding on pipe or tools that had sour gas on it...omg that made me so sick to stomach and felt like I had heartburn....but somehow I got strayed from the story of imagination...I would at times go to the shops in Casper, Riverton, Evanston to help train someone else to do the billing out of those stores...I worked out of the Rock Springs store...I love the job...
With Charli she would go with me on the trips to the other stores and I would start describing the land scape and mountains around us and have her visualize what it would be like in the pioneer days...riding on your horse and keeping an eye out for the Indians and make the sound of shooting and yah yah and wooo wooo wooo etc and she would start laughing...
With Tam when she was little and to keep her occupied when we went out to dinner at the Peppermill; we would be sitting in a booth and with all the foliage and dimness of lights I would start telling her that...I know this is all funn:D and has nothing to do what today but...have you ever heard of "Ralph the Mouse" you know the little half hour show of a white mouse on a motorcycle...????
Ohhhh, I even have to say I love watching his movies...anyway, I would describe what Ralph was doing on the back of the booths and how he was hiding from everyone and say see there he goes on his motorcycle, etc...it worked and I've never had a problem with her when out for dinner....lol...
I was suppose to be watching movies cause they are due back at the library tomorrow but I'm enjoying the journaling and listening to the music...keeps me focused and determined...
Shaun was a sweetheart and mowed the lawn for him but I asked first if he was up to it as he just got off work and hadn't been home yet. He works graveyard at the same plastics plant as Tim. He also took him to get bag of potassium chloride for the water softener while I took Jack to the groomers yesterday. Then I fixed hotcakes and eggs for Shaun...
Tam came home from college for the weekend at least til Sunday...to finish getting rested up and know someone was close by if she needed some motherly healing and love...see she either had the 24hour bug or she got food poisoning...and her dorm roommate was going home for the weekend too so she would have been by herself.
Red came and got him for coffee and I'm not so sure he was really up to it. He said he was okay and by the time he came back he was hurting so bad...He did it again and went twelve hours since his last pain med. Babe you can't do that...he was trying to get off them again and he's finding out he's not able...he says he hurts all over including his legs and especially his knees...he feels like he's loosing all his muscle strength...he was showing Tam the difference between his two arms and his left arm that's fractured is nothing but almost skin and bone...there's no muscle bulk like you see in his other arm...I'm sorry but I'm having a moment and I'm afraid it's worse than what we want it to be....by just the way he's acting and feeling and thinking back on the different things in the past...how the box fell on his right shoulder in November 2006 and always feeling tired, doing less and less around the house and chalking it up to old age creeping up...saying he hurts all the time and can't find anything to help even thru the doctor and then not liking to take pills...he'll quit taking them cause he feels they aren't helping...
We were talking today and feels thing are so up in the air and not sure what to do because we don't have all the info on what kind and stage etc and what and how long the treatments before surgery for the rod in his arm...and how he wants me to do certain things or gets certain things...I was fighting back the tears when he ws talking that way...It reminds me of things my mom said about my dad after he past away and how certain things were said and done by dad...that mom said he must have known his time was close. I remember that time I was working as waitress on graveyards and was getting ready to quit and go help mom with dad but that didn't work out. One night I was working and mom called me and said he had passed away in the hospital...and I'd hate to see my girls have to go through that although Charli already has with her grandfather and you would think something like would prepare you for the future and it never does. Everything happens for a reason and I thank God that Gary is there for Charli because I feel she going to really need his support if it was to come to that...see Gary's folks have both passed away. His dad was on oxygen for lung issues and his mother had cancer. They, Charli and Gary I feel are stronger people today and that together they will handle telling their girls that their "pappy" (grandpa Tim) has cancer and which the granddaughters will find out this weekend. I'm not sure how the youngest will take it...she's quiet, creative, smart but I think unsure of herself at times...the oldest will get mad and probably rebellious but she's strong and will realize it happens for a reason but that it's not fair...that she feels she keeps getting hurt when she gets close to anyone...I wish they lived closer so I could be there for them too...
MaryAnn at the docs...was trying to comfort me one time and said she could see it in my eyes that I'm always trying to take care of everyone else and that I need to start thinking of myself and live for me so I can live for my family...See my doctor has suggested it's time I get on a lung and/or heart/lung transplant list...because if for some reason I was to get worse down the road and I wasn't prescreened and on the transplant list I wouldn't be able to get one and it would be too late...I don't want to put my family in a financial burden I just can't do that...it was recommended to me years ago but I was doing good and only on oxygen at night...
but since 2005 I have been on oxygen 24/7's...I'm still maintaining like I have all these years since 1989 when I was told I had sarcoidosis...that's knodule growths in the lungs...it can show up anywhere in your body but mine is in the lungs and it happens to be chronic not like most people who get it and have it for awhile and then go dormant for a long time...No, they don't know what causes it and how to treat it...I've been on prednisone, then they tried methotrexate and that didn't work for me...then they tried choltricine (I think it's spelled right) and that didn't either. So I'm back on prednisone and at one time I went a whole year without taking it except when I got sick with pneumonia and boy did I ever get pneumonia when I first started out...Every time I turned around I was sick bronchitis, pneumonia and it would hit me fast and hard to where my chest and back hurt so bad I couldn't breathe...over time the pneumonias were less but hit me slower and I would always doubt whether I was getting sick or not...I've been to the National Lung Center in Denver and I loved the doctor who did the procedure which is called "bronchoplasty" I was able to breathe better as he opened up my airways as much as he could on my right lung...he said my right lung looked like it was salt and peppered with the knodules and alot of the airways were closed off and what ones he was able to stretch open (for example straight pin head to eraser head size) wasn't much but it made a big difference to me in breathing...my insurance changed and so I tried another doctor in Utah and made the wrong choice. I should have stayed with the Denver doctor even if meant more money out of our pocket...the doctor didn't read my medical records well or at all according to my niece who Tam and I was staying with and it was suppose to be a same day procedure...I woke up in the ICU the next day...I flat lined on the doctors during the procedure...they said I tried to tell them I couldn't breathe when coming out of the anestesia and I quit breathing...I was intabated (you know the tube down the throat) when I woke up I couldn't breathe and my hands were strapped down to the bed railing...YOU DON"T WANT TO EVER PEN OR TIE ME DOWN...I managed to get my face somehow over to my hand and yanked the hose out of my mouth...and I set off alarms and the nurses came running in and said I can't do that...Yeah I can I just did and I can't breathe with it ON!!!! So they gave me an oxygen mask and I promised them I would breathe deep...anyway, Tam was scared I found later and Tim couldn't get away from work so with phone calls everyone was keeping in touch to see how I was doing and I was in hospital for a week and then stay with my niece for a few days...I felt so weak and I was so bruised on my arms...the IV's and probably from me tugging to get loose...I wanted to come home so bad and I don't know that my body was really ready but I had to...Our anniversary of first meeting each other was coming up and I wanted to be home...with Tam in hand we left Salt Lake City and drove to Southern Nevada...I was crying on the way home and I just had this strong feeling that I had to be home...after getting home I wouldn't go anywhere...couldn't handle anything, I was afraid of anything and everything around me but not of dying...go figure...it took Dr Sharon to listen to me and put me on antidepressant for awhile and you know I didn't stay on it for long maybe a month...I didn't like the way it made me feel and I couldn't keep being afraid and couldn't do that to my family and Dr Sharon made me finally realize that and I snapped out of it...
Anyway, I need to end for tonight and journal tomorrow...or tonight and I will try not to have it too long...Prayers are needed for hoping the doctor has caught it in time and that everything will be okay. Good night. Much luv to all...