Pain Pain Pain

Well, Pain is back again with a vengeance !! Something is going on that I can't figure out so
yesterday I went to my primary care doctors office to see her nurse. Don't think I"ve seen my actual
doctor since 2011 or more. Anyway, I had to deal with some urinary track stuff and also asked if I could have an X-Ray to see if I've fractured anything due to the enormous pain I'm currently in. The nurse finally agreed and hopefully today I'll find out what the results are, if any. Not sure what would happen next. I just want to know whats happening ya know?

I can't even use my right arm much because it then hurts the area on my back shoulder blade area right away. I am learning to use my left arm and hand to do most things. I have a couple of left handed friends and one who uses both for the most part. I figure at least I can try something new. :)

I just hate having pain that is getting in the way of my living and visiting with people.

This coming weekend I"m seeing my dear friend from when we used to be neighbors and friends in NC while I was in massage school. She is now living back in New Orleans. Anyhow....she is coming up to see me this weekend and I"m so afraid that I'll be so out of it by being drugged up that she'll be sitting around watching me sleep. I don't want that to happen! Not now!!

Sigh.....

Its out of my control at the moment and I'm just praying that this pain will subside soon.

My nurse has increased the morphine even before the pain started and it isn't working at all. I've tried Icing, made it so much worse, I've tried massaging it myself and using a strong pain tincture, nothing is working. FRUSTRATING!!!

Ok, I'm done with that. I just hate it when it overshadows the rest of my life. Very annoying.

I do hope you all are feeling well and enjoying this March so far.

Love and Laughter and Joy to you all!

This photo was taken by my mom when we were visiting Wolfes Neck Farm. I love the animals there. They are so healing. They seemed to be in line waiting to be scratched on the nose, :)

Saying NO

This morning I awoke with yet more increased pain. I got the go ahead from my oncologist and hospice nurse on duty to go up on the morphine which will hopefully help me be able to go down on the dilaudid. I believe the dilaudid is making me feel loopy and dizzy, disoriented and nearly falling over. Tired Tired Tired.!

Yesterday I woke up with extreme pain and extreme fatigue. Huge!!

I had to cancel a visit I was looking forward to with a friend of my step sister in laws. I've met her a few times, she's such a sweet woman who has the best smile, always lights up the room.

I hated saying no to her. I just had to. I was sobbing from the pain and fatigue. And also for having to say no.

I was able to see my Hospice Social Worker at noon and that helped a lot! She put things into some perspective for me and brought about some reality as well.

Some bathroom issues are happening which i'm sure you all don't need to read about, but its something that is VERY upsetting for me. It goes along with the whole living with dignity part, When I was doing the other two film projects before this one with my brother , I had mentioned the Documentary How to Die in Oregon. I wonder how many of you have seen it? You have to get it in the mail thru Netflix or buy it thru amazon. Its really worth watching. I'm feeling like I"m becoming the woman I feared I'd become. The woman who can't wash herself and wipe herself and basically become dependent on others for everything. Boy its not easy to allow this to happen and be ok with it. I sobbed and sobbed with my Soc Worker. She is so wonderful. She just allowed me to do that and didn't try to fix it. There is no fixing to be done. It is what it IS. My job, so to speak, is to find a place of acceptance. I'm still working on that one and saying NO, and accepting that my body is dying.

Things are going to be happening that I have no control over. Sucks, but its reality.

Other than the yucky physical stuff....

I did have a good time seeing my brother and his two handsome boys, my nephews. I'm so happy we got to hang out some.

The film makers are so nice and understanding of my time needed to recover. I did over do it on Sunday and I think that may be whats put me into a higher pain area, but it was totally worth it. I'm not really sure that that IS why the pain increase is here. Who knows for sure.

I got to watch my nephew swim in the pool and that was fun. He isn't the best swimmer yet, but he's trying. He has his head way out of the water doing the doggie paddle. LOL, so cute. He can swim on his back too.

My oldest nephew watches out for his little nephew and they laugh together. So lovely to watch them interact in a sweet way sometimes. Of course there is fighting too, thats what brothers do.

Those little moments I treasure.

I discovered a new APP called Split Pic, soooooo great!!! We had so much fun Saturday night without the cameras, just playing with taking pics of one another. There is one that is freaky because its of me and my brother. My face on the left side and his face on the right. Split down the middle. I"m going to try and post it on here. Not sure I can.

Our eyebrows and nose are so similar. Freaky and Fun to see.

My brother and I got to go over some old pics of one another with the film crew filming, in my apt.

It brought up all kinds of old issues between my brother and I. I believe we have mostly moved on with all that stuff. I don't have room in my heart or body to hold onto that kind of anger or resentment or just stuff that needs to be worked out between us both. I think Mark can work on those things on his own, he doesn't need me. I feel I've healed a lot about issues between us. Any other things I may want to work out, I may be able to do that on the other side, but I honestly don't think there is anything unresolved in my heart or soul as far as with my brother.

Do I wish things would be different with Mark and me and his boys and how he does or doesn't take care of his emotional self? Yes, of course. But thats HIS work to do. Not mine. I was able to tell Mark my fears around all that and what I would want for him, but again, not my job or business. My fears and anxieties. Not my job or business to tell ANYONE how to live their life or what decisions to make in their lives. I hope that others can back off and accept what I've done and what decisions I've made in my life and if not, then still love me for the weeks or maybe months I have left and not let that baggage get in the way of having loving moments together.

I've had to lose a couple of friends lately due to stuff getting in the way. Be it anger, or old issues that really have nothing to do with ME, they have to do with triggers of an old family issue or event. Some people just can't handle being around someone that is dying the way that I am dying. That is their decision and I'm mostly accepting that. Its a loss I have to grieve.

Anyway, I think you all get the point?

I had so much fun on Sunday as well. We all went to Fort Williams Park, where the oldest lighthouse in Maine is located. My family and I used to go there lots of times in the Summer to cookout on the grill and play bocce ball or fly a kite or do what people do out doors. So much fun!

So my nephews went climbing on the rocks and I had to look away at the scary times when they looked like they could fall. I had to remember that thats what I did as a child. Letting go of control. LOL

Mark and I had more lovely moments that were filmed.

The sound technician and part time camera man took some pics on my camera, of my brother and I that came out beautifully. They will be cherished for a long long time.

I will sign off now and say that I love that so many of you take the time out each day to read my blog and even comment from time to time as well. I know in this busy world, thats a big thing. So thank you!!

Have a beautiful day filled with moments that make you smile or wonder or feel emotion of any kind.

Blessings to you all.!

March 2nd, 2013

Hi Ya'll

I've been meaning to post for DAYS but life has gotten in the way.

My pain has been increasing daily. I"m going up on one med and trying to go
down on another, but its not really working so hot so far.

I had some emotional conversations with some family members and friends lately and it ALL
contributed to my increased pain. I wish I could explain it better, but what I've learned from my hospice team and from my own experience, is that when I have emotional times, especially stressful or angry moments, then the pain increases and the major fatigue does too.

If I have a few days of those times happening, then it can take a few days to recover from it all.

I had to sadly cancel seeing my Aunt on Monday and Tuesday due to the pain and fatigue. I was crying and very upset about this. My body told me ....no way in HELL are you doing anything today.

I did get to see my aunt, who was visiting from SC, for one and a half very good days. One day I was a shopping fiend. I had to find a nice shirt to go with my beautiful new skirt I bought lately. So that was the mission but then I saw all the major sales at JCP and ended up with more things I didn't think I'd be able to afford. There are MAJOR sales going on there, just for an FYI. $10.00 pair of skinny jeans and another pair of skinny jeans/pants for $5.00!!! Then $3.00 tank tops and the most I paid was for a beautiful sweater that was reduced to $23.00, but it was down from around 60-something. amazing!

I have never shopped like that before. I'm usually so frugal with my shopping and its usually at Goodwill or at other thrift stores, but this was just as good and they are brand new! I had so much fun!

My mom and aunt were tired and sat in another dressing room bench while I tried on clothes and came back to model them for them, no one else was in the dressing rooms, it was so quiet. I felt like I had the store to myself. What it is is I felt like a princess who had her handlers to carry things for her and do whatever I wanted. But I don't think they felt like that. It was nice to feel important and to be able to buy without worrying about spending too much. Such a freeing experience. Now I have some funky clothes that fit. My aunt had said that it look like I'm sick when the clothes hang off of me and if I have pants that fit, then its not so obvious. Shes right.

I had bought two pairs of skinny jeans because the other pants I got not long ago are now falling off of me. They were the pair that I got because my other pants were falling off. I guess its still happening. Weight loss.  :(    The last time I was weighed was a couple of weeks ago at my Osteopaths office and I am down to around 130, I am 5'7"and don't EVER remember being so small in my adult life anyway.

I'm trying to not be too down about it and have fun. I'm finally the size I always dreamed of being. Maybe a few pounds heavier would be better. I don't think everyone should be this skinny at my age anyway.

My mom told my aunt (and then later told me) that she felt like it was weird to be having so much fun when I am dying and so sick, that I look good and we're having fun. Like thats the wrong thing to be doing now. I told my mom that some denial is really really healthy sometimes. We have to live there in that denial world and have fun from time to time. It helps my mood and everyones mood to just forget about the big F-ing C and just have FUN!!! YES!!

It has been harder to be on the computer for too long. It exhausts me, but I swear I will keep blogging for as long as I can and then maybe I can tell someone else what to type for me. I take this blog seriously and I know some of you like reading it.

I may not post as often but I WILL post as much as my body will allow these days.

Today I see my brother and my two beautiful/handsome nephews!! They are visiting and my brother is having HIS documentary film makers follow HIM around and they want to film the two of us hanging out at my place and then tomorrow maybe out on the beach. We'll see how it goes. Its always strange to have a camera in your face so much and try to act natural.

I'm going to do my best and I hope Mark will too. To just be real and not play to the camera and edit yourself as you speak. Its easy to do. My brother used to be an actor in NYC for a while and he teaches yoga amongst so many other amazing talents that he has, but sometimes being totally REAL with family is a whole other ball game. I'm sure it will work out the way its supposed to work out.

I'm looking forward to seeing my nephews too, hopefully off camera.

Well, I'm off for now, got to get my apartment in some kind of order for the film crew to set up and get ready.

I wish a wonderful weekend for you all...... filled with love and LAUGHTER!!!! *I hope you get a kick out of the picture below that I took recently. Sweet Sheep at Wolfes Neck Farm

Blessed Be!

What Will Never Be

So I'm watching a crime show drama and mostly I half listen while I play words with friends or something else, but today I paid attention for the most part.

You know how some people will cry at commercials or during the same song every time, even if played for a million times?

Well, I'm a bit of the opposite. I believe I grew up learning to be strong. Take care of myself at a pretty young age. Due to divorced parents and struggling times. My mom did the best she could at the time and I just ended up alone a lot. Latch key kid I suppose I'd call me back then.

I cried a lot as a teenager, with all those raging hormones, how could you not? Then as life happened and more and more challenging events hit me, I just shut down a bit. I went numb. Very depressed most of the time. I was still somehow able to work at least one job if not 3 at a time. I could put that "face" on pretty well. I worked for customer service type jobs mainly. I could deal with people really well after some time.

I feel like I've survived due to being shut down emotionally. Since my boyfriend died in 1999, It was like pandoras' box had been opened. When Stuart died, I was determined to do what ever I had to do to heal from the grief. I was NOT going to let yet another shitty event in my life bring me down. With help from so many people, therapists at first, I was able to start chipping away at the wall. About 11 months after Stuarts' death, I moved to SC to be with my aunt and uncle who put me to work on their small farm and beautiful property. It was a good thing, to be working on the land and learning how to brush a horse without being panicky. I was nervous about being near a horse for the most part. I learned how to get back up on my feet again. I also learned to love dogs. I had grown up with mostly cats. I was not really a dog lover. I got over that pretty quick with the 4 dogs to teach me. I love dogs now Thanks to my aunt and uncle, I was able to go to massage school in NC. That experience was wonderful for me. I faced some hard times learning physiology and kinesiology, anatomy and so forth.....not easy. I then went on to do other things.....my depression off and on, up and down. Things would get hard and I'd move back home, or towards family. Finally I ended up back home and decided to not move again. To stick it out and face my "demons" so to speak.

I won't get into all my history here, but I was reminded tonight that because of Stuarts' death, I was able to open up some doors that may never have been opened. I did so much work on healing my spirit and soul. There were times where I didn't want to go on anymore but something kept keeping me here. I couldn't understand it, why?

I'm still not 100 percent on the why answer yet, but I am grateful for so many experiences I've had since 1999 and especially since 2010.

I do have some really painful moments even among all kinds of gratitude. Tonight, on the crime drama, this cop gave the most beautiful speech to ask his girlfriend to marry him. It was so emotional, and real feeling.

I started crying realizing that my boyfriend Stuart never got to ask me that question. I never have been asked that question and I never will have that question asked. Not in this body anyway.

Thats enough to make me cry. Even with all my defenses up and controlled emotions, I do cry from time to time. I'm trying to allow the tears to come. Its a work in progress. I'm still learning something every single day.

My "work" isn't over yet.

Nope, not yet.

PAIN and Creativity

Just wanted to say a few words before I went back to bed to rest.

I had a wonderful weekend seeing friends and shopping and doing lots of creative projects.

I mailed out some pictures that I came across recently, to people all over, that I thought would love to have the pics. I'm going thru old totes from my storage. I decided to not read old journals. I was speaking with my Hospice Social Worker and I quickly realized that there is no purpose in reading about pain and suffering that I went thru a long time ago. My SW said that the journal helped and was useful at the time and now its not useful, so I threw them out. I usually only wrote in journals when I was really upset, very depressed or in need of venting feelings, exploring different ways of thinking. Also for writing down things that I couldn't tell another living soul. So, they are gone

Little bits of my past are being thrown away and discarded. They are not needed anymore. I am in a different place in most ways possible. I"m so happy I'm in the place I am in. Emotionally, mentally, spiritually. Those old journals were voices of my past, whispers of a far away time.

Today....

I'm dealing with PAIN!! I think all the organizing, creating, shopping and whatever else was a bit too much? Or, maybe the cancer is just flaring up because it wants to? Its almost like I'd forgotten about the cancer this weekend. Not completely but mostly. Felt good. So maybe the cancer felt left out and now it wants to be in the fore front of my mind. Ok, you win !! Lots of pain this morning, so much,  that I was pacing back and forth in my small apartment, like a wild animal caged. I called my nurse and the hospice office. Finally I got a Home Health Aide to come by and rub some tincture into my back where it hurt the most. It helped some but now its back screaming at me. My nurse wanted me to go up on one of the meds I'm on. It worked for  while, now its not.

I think it may be time to go up again on the big guns....sigh....

Not ready. But don't want to suffer and have everyone around me be miserable too. Having to deal with someone in severe pain is no fun.

I'll figure it out like I always do. It just takes some time to get to that place. I'm going to try and lie down, (on my side cuz i cant lie on my back) for a while and see how that goes.

I'm just having an off day.....Maybe tomorrow will be an ON day? I DO get to see my wonderful polarity therapist, so that will do me wonders i'm sure!

Blessings to you ALL! xo

V-Day

Hi Ya'll

I just wanted to share how my Valentines Day went today.

I think I've mentioned that Valentines Day is not a favorite holiday for me. At least not in past years.

So, I thought I'd try and make today be about LOVE and being with friends. It doesn't have
to mean being with a boyfriend or romantic partner. It can be a wonderful day to remember what love means to so many people in so many ways.


I made lots of new cards with my photography and a friend is selling some (hopefully) at a great event happening tonight. She offered to put some of my cards in a basket. I hope they got seen and maybe some are out there in the world. So nice to think that they will be here even after I"m gone. I know most will be recycled or thrown away, thats what we do with most cards after a while right? I've saved some over the years. But they add up! Especially being a cancer survivor and getting cards all the time, which at the time was beautiful and very much appreciated. Its just that over the last 6 years especially, I would have boxes of them. Some people that have passed, I've kept some of their cards so maybe others will do that with mine? Makes me smile to think so.

I got to hang out with my mom this morning and that was fun! She gave me some special items and one was a small painting of some mourning doves! I had taken a bunch of pictures of "my" doves out my window during the last snow storm and she took a couple pics. I had no idea that she was planning on giving me the painting. Its so precious! I really love it. I feel the love she put into making it too. Thank you mom!

I then had a really good time with my dear friend Gen. We were delayed in getting out and about this afternoon partly due to my intestinal issues still hanging on a bit, and then my sink needed repairing, so by the time we got out, the sun was getting ready to set in about an hour or less. It ended up being the perfect time of day for some wonderful pictures. I didn't have a huge amount of energy so maybe having the light go away was a good thing because I really wanted to keep going. I remember saying to Gen, just a little bit more..... to the corner. Lets cross the street........ and then I looked up the street that has a bit of an incline and knew.....nope. Not a good idea. I did do quite a bit anyway.

Gen was so flexible with our plans. She bought us both a hot beverage and a fancy schmancy cup cake. They are known for having expensive cupcakes so we were both reluctant to a point. I tell you what....that was an amazing cupcake. I think it may be worth the price. YUMM! I feel like John Travoltas character in Pulp Fiction. "Thats the best five dollah milk shake I ever had", or something along those lines. Happy Birthday tomorrow Gen!!

I was sent some fun pics on my phone of my step siblings out on their Valentines' dates. It was so joy-filled and I saw LOVE. So great! I know this sounds like I"m on ecstasy or something, but I assure you i'm not. I just sometimes feel like I'm getting it for the first time. Some say that as you get closer to the other side that you gain bits and pieces of the reason why we humans are here on Earth. What the real purpose is. That bits of information come at you and then when you DO die, then you get a LOT more info on the big picture. I don't know if it would be ALL of the "picture'.

Who knows but something inside me feels like this is true. I keep having these moments of just "getting it".

As Oprah says...."an Ah-Ha moment"

Thank you all for reading and for posting comments

Happy V-Day Everyone!

Happy V-Day!

Happy Valentines Day! I took this shot during a blizzard the other day. Its hanging from my window

I love that I can still take photos and create my art even if I'm snowed in my apartment. :)

So I've never liked Valentines Day. I may have mentioned this before and I'm sorry if I'm repeating myself. I've had other friends along the way who also hated it so I used to have Anti-Valentines day parties and go the nine yards...wearing black, can't touch one another if you are a couple, i passed out hand made hearts with cracks thru them for people to wear. Played love stinks in the back ground....you get the idea.

I think back then I was just sad that I rarely had a boyfriend on THE DAY. And all the pressure that goes with getting presents and receiving presents. I remember when I worked as a bank teller a million years ago, we'd all see the flower delivery person come in and try and guess who they'd be for and how good the arrangement was. Like it was being judged and then if they weren't all that...then the relationship would be judged. Are you kidding me!? wow!

Such pettiness.

The last few years I've tried to embrace it a bit more and not be so scrooge-like and angry about it.

I'm determined to look at things differently on my last valentines day. No I don't have a boyfriend who will buy me roses or make love to me by candle light, but I CAN think about love in general. Love for ALL beings who exist in my life and not.

So, ok....

Love.....

I love that most mornings I wake up to see my cat next to me on my bed even though he can barely fit due to his size and me being in a hospital bed that is a twin size. I love that.

I love that most mornings the mourning doves out my window are waiting to get fed by me and just sitting on the tree out my window staring in at my window when I pull up the shade. I love that.

I love that there is a secret valentine post-er who posts regular sized white pieces of paper with a big red  heart on it, all over town. EVERYWHERE!!! I love love love that! You never know where they are going to be. On every business and window and store front and usually there are some challenges. Last year I think it was, there was one way way up high on our local museum, it would take a very high ladder or maybe theres a door up there that I can't see and this person has connections? The challenges are most fun. But it makes people smile so why not? Its been happening for years and years now.

I love that my digestive system is almost calmed down today, so i'm not in severe pain and exhaustion that i was for almost two days straight.

I love that I will be seeing my mom today. She already let loose that she painted me a picture of two of "my"mourning doves. I can't wait to see it!! My mom is a wonderful painter.

I also love that I will see my friend Gen to go do whatever. We are both photographers so we both, being single, have vowed to try and focus on LOVE when we shoot today. Maybe finding some heart shaped rocks or shooting what love looks like? Its also her birthday tomorrow, so I will be so happy so see her open her present and I hope she doesn't already have it. Fingers crossed.

I love so many people in my life who love me even though my brain isn't cooperating too well lately and has caused me to be cranky and irritable.

I love my hospice team who are there for me lovingly and not judging me or being rude to me. Compassionate. So important.

I have to say that I REALLY will be happy when its over. But for today I will try my hardest to let the negative feelings go about V-Day and enjoy it for what it is.

I hope you all have a great day too!

I'd love to hear any posts you may want to leave. Even if its just that you are reading the blog, would be wonderful. I'd love to visualize who is reading it. Thank you!

I also took this photo during a blizzard on the inside of my icy window  <3 p="">