Sunday, June 2, 2013


Hi Ya'll

Well it's Sunday and the last few days have been hot and humid! I had my space heater on on Wednesday due to the cold rainy temps and then on Thursday it suddenly became Summer. Hot and Humid. Friday was the worst. Temps got up to the 90's here. Unreal! Maine tends to do that but I also suspect Global Warming has a play in it all too.

Luckily my dear friends' husband was able to put in my A/C from my basement, 3 flights down. I would not have been able to stand it. My lungs would have been in big trouble. I went out early Thursday morning with my mom and I had some trouble breathing then. It does get a bit isolating being holed up inside when its so hot. But i'm grateful to have the cool air.

I did get out to run errands and yesterday I was able to get some shorts, a skirt and a dress at the local thrift stores with my friend from NH. I realized I had no Summer clothes that fit anymore. Nothing. Not one skirt or pair of shorts or capris, nothing. So, we fixed that real quick. I was so happy to find some things that fit. Once again I went down in size. Its so odd to think I can fit into something so small. I brought the clothing items into the dressing room with so much doubt but then when the zippers closed without trouble, it was astonishing really. Mixed feelings for sure. Maybe thats why so many clothes fit me and I had so many options? I don't believe its right to have so many options for people who are small or thin. When I was 35 pounds heavier last year or so, I always had trouble finding clothes that fit that I liked. Our way of thinking what is the normal size really needs to change.

So, to update you all a bit. I went on a new med again...well, it was the same med as a while ago, except now it isn't in the pill form, its a constant stream going into my PICC line and then when I need an extra boost, I push a button to give a small dose to help with the spiked pain I'm experiencing.

Well, my body was not happy about changing meds so abruptly. I went into a major mood change. I did see on the side effects that mood changes are one of the possible side effects. Oh boy did I.

Over the Memorial Day weekend, I was not in a good space. I tried to reach out to some friends and family but I feel I didn't communicate well and it seemed to back fire on me. I did ask for my mom and step dad to come over a couple of times just to have someone around and they did for a while a couple of days. That helped a lot to have someone here.

My body was just wanting to reject a new heavy medicine. It needed time to balance out and get used to it.

Its mostly got used to it but from time to time I do feel those feelings come up. I'm trying to just keep busy and positive. Not easy when the fatigue is so high.

One thing that has kept me hopeful and distracted is that my Documentary is being shown this coming Tuesday on a big screen for my friends and family that can make it. It will be on DVD soon as well. So I will be able to loan out the DVD to those who can't make it Tuesday.

I am so nervous! I know its a beautiful film and I love it so much. I just feel that stage fright kind of thing. Knowing that about 20 or so of my family are going to see ME on a big screen and listen to ME talking about things I'm passionate about. I'm so used to being behind the camera in my family of actors and performers. So this is a new experience for me.

I am really confident lots of people if not all that go, will love the film. I'm hoping it will also speak to my belief of having a choice and wishing that all states were able to have the Death with Dignity Act or whatever they want to call it. My film (not really just mine, the wonderful film makers too) doesn't throw the belief into anyones faces, its subtle but still speaks about my belief, which I love. Its funny and joy-filled as well as some sad reality based moments of that fact that I am dying.

All of that in about 20 mins I believe. I still haven't got the exact running time. I remember seeing some YouTube films that are five minutes long that have touched my heart deeply, so it doesn't have to be a long film to make an impact.

I won't be able to go to the film myself. I'm not sure I mentioned that or not, in a previous post, due to it being shown so late, but mostly due to not being able to have more than a few people around me visiting or wanting to hug me and wish me well. I am imagining if I were there my wonderful friends and family would want to hug me afterwards and tell me what they thought of the film and it would just be too overwhelming for my vulnerable nervous system. I get overwhelmed very easily now. I hate that I can't be there. I would LOVE to see it on the big screen. I would LOVE to receive all the wonderful feedback and love afterwards. My reality just doesn't allow for that to happen. One more thing I have had to grieve. I do look forward to hearing what people think, via email, phone, text, Facebook, whatever way someone wants to communicate their thoughts with me.

I will be home biting my nails wondering how its going, but in an excited way.

There is no way I could possibly thank the two amazing film makers who made this happen for me. It really is something so incredibly special and healing for me to go thru. The whole process. To filming it all and then to see myself on screen at their home and to speak with the two of them about so many things. To get to know them as well. All of the process has been beautiful. I will never forget it all.

My cat Stewie is also in the film. So sweet. He is quite the ham and a bit of a diva now. I bet people will want autographs made. I'll have to get one paw print made and then copy it.  lol....not really.

He does seem to know something has changed and is being a bit demanding lately. Wanting to be brushed all day long. :)

My moods are still up and down lately. I know it could be situational and not just due to the medication, but somehow it still feels like the meds. I really have no choice but to go with this med or the one I was on before. I think sticking with this one is a good choice for now.

People have told me that I am really living my life now and not just giving up. My Social Worker says that a few of her clients will just be miserable and not talk with anyone or just be angry all the time. I really try not to be but certain days I do want to just yell and scream. That could be a good way to let some of this pent up emotions out. Maybe just not at someone, into a pillow or go throw some eggs at trees or ice cubes ...... something.

 Well, for now the sun is shining and I'm going to see one of my nieces today along with her mom, so that will be good. Maybe we can go to the ocean and I can stick my feet into the water. I will pray the humidity won't keep me from doing that today.

I hope you all have a lovely day today filled with laughter and love.


Geneva Nelson said...

I'm so looking forward to seeing your documentary film. I can envision it being so helpful to others who are on a similar path as yours.

I'll see you on Wednesday and we can discuss! Love you honey! <3 Gen

Geneva Nelson said...

Let me amend that... see you on THURSDAY! <3

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