Good Morning to everyone. I haven't written for awhile, partly because I have not been feeling good, but also because I have been trying to work around that not feeling well. So, I don't really know what is going to come out today, I decided to just do a little stream of consciousness writing....it may be interesting???
So, one of the topics I have been wanting to write about it creativity. I am so thankful and grateful that I got this gift times ten. I believe creativity is what has pulled me though this illness. I seem to be creative in almost everything I do. The other day, I was feeling pretty good, and on the days I am feeling good, I like to use one of my creative talents, cooking. So, the pictures above are a plate of my fried green tomatoes, with prawn and raw cow milk dill cheese. I love to have fried green tomatoes in the summer. My version is a little more healthy than the traditional, and they are if I don't say so myself, to die for! I don't deep fat fry these, I saute them in olive oil. I used cracker crumbs, made from rosemary crackers. They were delicious. I am trying to eat a diet that concentrates on reducing inflammation. It is basically the Mediterranean diet. So, part of my creativity is used in cooking meals that are good, nutritious, and will hopefully help the pain decrease. One of my new favorite things to do, is to think of a dish such as bagel and lox, and figure out how to use the basic ingredients to come up with something completely different. For this, I used brown rice and quinoa as the "bagel", and into this I mixed smoked salmon, dill, red onion, capers, and a few sun gold cherry tomatoes cut in half. Then I make a sauce (cream cheese), with olive oil, lime zest, lime juice, and a little creme fraiche. I also add just a tiny bit of agave nectar. Good for me, and good to eat too!!!
So, cooking is how I use my creativity, especially on the days I feel pretty good. I also included a photo of the Plainfield Co-op where I do my shopping. I feel very lucky, as this photo is taken from my front door. The Co-op is the blue building. My other goal I may have mentioned in other blogs, is to do a little exercise every day. I used to have a goal of hiking the Appalachian Trail, then I down graded that to the Long Trail, then I thought well maybe Spruce Mountain (a local mountain peek, and nice hike), and now, I try and I am not always successful to walk to the co-op everyday. While this is sad for me, to watch this progression of the illness, I am very grateful that I am still walking to the co-op, but even more wonderful, is that I have this beautiful place, filled with healthy, organic, local food right across the street from me. And what is even better than that, are the workers who I get to see every time I go there. And, the community members that shop there are also pretty great. It is my touch with human contact each day, and I think that is important. So, I feel very lucky to have this little business across the street. I also feel extremely lucky that I can still walk over there, without a walker!!!
The reason I haven't been writing is a good one. I have been finding creativity and partaking of it's healing potions. I have also been creating art, and I even got out the mandolin and played with that a little again. I have a goal, and that is even if this illness is trying to take me down, cause me pain in every little place in my body...well, I am going to fight back with creativity. It is my weapon of choice. I gladly take up a little creativity and mix it with a little creative energy and come out with the wonderful elixer of pain distraction. It doesn't always work, another reason I have not written is I have been laid low with pain. But, I don't want to talk about that. I am tired of that subject, and tired of that feeling.
I have also been visiting my lovely owlbox. Unfortunately 2 of the owlets have died. I wanted to do a tribute to them in this blog, but I couldn't get the picture I wanted to use to load. I did include it on my FB page. But, another pain distraction I have been using is taking screen shots of the owlets. This is so much fun, as they are like little prehistoric looking, feather covered softballs with tiny little wings....and such humor. I get hours of pleasure doing this! I hope to share some of these here with you, and especially on FB.
So, there you have it, again...not a great piece of writing (I will once again just to write), but if you are someone who is in pain, who feels like life is over because everything you dreamed of doing is no longer within reach, well, I am hoping you too can use some creativity to make this illness and/or chronic pain a little more bearable. I hope you too can cook up something that helps you feel better (yes bad pun), and that you can find something to do that makes you feel like you are still learning, and giving back to this universe we live in! Namaste
What happened to yesterday? How is it possible to go from a pain free (almost) day, to one that I can't get anything to knock down the pain level. This seems unfair. But then, what does that mean? So, the following is a peak into, how to try to make intense unrelenting pain go away....or, I do try other things besides the pain killers.....
Earlier today, I wanted to come on here and get very deep and philosophical. I had some thoughts that I wanted to share, about spirituality, love etc. But now, the pain is all I can think about. I have tried everything I know how to try to get this to quit. I have spent about 3 hours total in a hot bath, which feels fairly good while I am in there, but the minute I get out....back to pain level 15 out of 10. So, I try distraction, which can work on some days....music, writing, reading, watching TV, but can't keep my mind on anything but the pain. Ok, time for meditation. First, I did the no thoughts, just get into that zone....nada, just kept bringing the thoughts back to the pain. So, then I tried the other way, get into the pain...what is it telling me? After about 30 minutes of this, I was ready to go do something crazy. I couldn't think of anything, but something like go put a a new computer on my credit card, or go drive to someplace far away, I have never been but have been wanting to see, or go to the local swimming hole and just pound the crap out of these arms and legs, I can't see how they could hurt any more......but, reality sank in...would that help? NO my rational being yelled back at me.
I thought maybe I could cook my way into feeling better. So I decided to make a nice healthy dish of quinoa and lots of veggies in a cold salad with a lime vinegrette. Again, I thought hey, I can't hurt worse, so I walked over to the coop, and back and stood to make the salad.... I became so nauseous from the pain, there was no way I could eat or enjoy the salad.
I thought maybe if I called a friend and tried to talk, that would help....I am so glad I got voice mail, as I heard my voice sound like I was about to burst out in tears at any second....don't think I would have been a very good conversationalist! So now what....
I have taken the most dose I am prescribed of the pain killers, and a little extra, and while it has maybe taken the pain down to a 12 out of 10, for some reason even these little wonders are not working today. Why? Why was yesterday so good, and now today......this. I wish I had the answer, because then maybe I could make it go away...weather? maybe??
well, my friends, basically I thought this would be another way of distracting, that maybe if I wrote about it, it would help, but what it is doing is making my arms and hands way more sore. Crap. I guess it is back into the tub go I......I also don't understand what is keeping me in my body today. Where is the disassociation I spoke of before, even that isn't happening, and that is usually kind of automatic. I don't know what to say except......
Mary is not having a good day! I think this could be like coyote ugly with a twist.....I need to chew my arms and legs off to get away from myself in pain (which I guess is like an unwanted bed partner?)
Today is a good day. I can't tell you why. Yesterday, not only was I confused and sad and angry and all sorts of ways....today, I just seem to be happy. Yay me! So, what has changed? Well, for one, the pain, fatigue and weakness appear to be taking a back seat to everything today. My mind is a little mushy, but for the most part, I am able to stay present, enjoy the little things I find....like the joy of touching the Touch Me Not, or Jewel Weed....I don't think I will ever tire of those little spring loaded pockets of weed seed throwing devices! I wonder, did the Creator create that to be so entertaining that we just couldn't help ourselves from doing that? Ok, I am sure the more scientific of you are saying something like "No, it is so sensitive so when something brushes against it, or a strong wind even, will propagate it's species", but I like to take it to the amazing and absurd!
Yesterday, I found myself quite taken aback by some of the comments (not made publicly) about my blog. I was so confused. I guess it sounded like i was saying that I believed or thought that maybe it was true that the drugs were causing me more pain......nope, nada, no way jose! What I was trying to say, was.....that if some doctors were saying that maybe it was true that the literature was saying that, then maybe I would have to start over again to prove that it wasn't so. That is why I wanted medical assistance, so they could actually see and document the fact that when I go off pain killers, I become what some may call a hot mess....or just a plain hot headed mess. I am not so nice, or kind, or wise, or witty. I know these things, I have lived through them. If you read any of the replies to my blog yesterday, an Angel, named Angel wrote a beautiful response. As Angel said I could have been writing her words, she very beautifully wrote mine. The pain was there before the drugs, the pain will be there after the drugs, the pain is there during the drugs.....I am just trying to live my best life. That is all I want. So, as things would go in my life.....I believe in signs, I think God sends them to me daily, and if I am awake, I catch them....sometimes they are called consequences, sometimes they are called a kick to the head, but anyway....today I was sent another message.
A friend, who I have recently met, suggested that I read a book he had read. He said it was about questioning religion, or something like that. It sounded maybe like something interesting, but also I was a little dubious. But, I got it.....and here is a quote: "...pain has a way of clipping our wings and being able to keep us from being able to fly. And if it's left unresolved for very long, you can almost forget you were ever created to fly in the first place" The Shack by Wm. Paul Young. YES!!!!!!!!!!!
Ok along with this quote, came a little gift late last night. I am still having problems with insomnia, so I tend to go to a chat room and video cam of a little barn owl named Molly. I will confess, if there is anything I am addicted to right now, it is this owl! But, in chat I met a person (I have no clue if it is male or female, but I am just going to say he, cuz it is one letter less to type *grins*) who is a medical professional. I won't go into the whole almost 2 hour chat, but basically he said I am on the right path. Pain needs to be looked at carefully but the effects from chronic pain, can be just as bad, if not worse than the side effects from the pain meds. He listened very carefully to my concerns, to my symptoms, and to my theory. His suggestion is that I am on a low dose of narcotics, especially for how long I have been on them, and that I have no need to prove anything to my doc (especially the one who prescribed them) as he already knows my level of pain, or he would not be prescribing them. Ok, validation.
So, now that I have these 3 "gifts", I see. I see that what I am doing is trying to remember that I am created to fly. If I keep myself from flying because of some opinions of others who do not live in my body, do not know my level of pain, and who can in no way understand what I need to function, well then I am grounded. And being grounded is sad. Sometimes I don't even think we know we are grounded, we just know we feel sad, or somehow cheated out of something we know, something deep deep inside.
I believe that because I know I was created to fly, I know that there is greatness, beauty and wonder in this world, and it is all there for my taking.....well then, why not do what ever it is that makes me stay in that place. After all....I can use that old saying...well, if God didn't want me to take them, then he wouldn't have invented them....LOL
So, today I am flying. Not just because of those 3 things. There is another really huge, really big lesson I apparently have learned, and I am giving myself a great big old atta girl for this one.....just because I am having a good day, does not mean I have to clean house, weed wack the yard, take a long walk (although I would absolutely love to do this), or anything that is going to jeopardize this good day. I still need to take it easy, to do things on a small but enjoyable level. This is not me. In the past, good days were for pushing myself to get things done, as you never know when another good day is coming. So today, I enjoy my good day. Maybe tomorrow I will also enjoy another good day, because today I learned to enjoy this day. Maybe I am on to something. It is ok to be a human being. That is what we are called. So today, I choose to be a human being, not a human doing, or a human thinking....I am a human being. I can touch Jewel Weed and be thrilled. I can feel the air on my face and enjoy the texture of it, the smell, and the sound. I can just be.
Can you?
Well, I got through yesterday. It wasn't easy. However, with some loving responses and phone calls from from my new kindred, and my cousin.....life got better. Well, I can't lie, the visit to the doctor to get additional pain killers to help with the pain was also a big factor. At least today I can walk without cringing and crying.
So my dear readers, what is on my mind today? Today is filled with possibilities! Quite different from yesterday, huh? Yes, my life has had to take a very different turn. Those possibilities, at least for now, are not what they used to be. There is no way I am driving very far, or taking a walk on my favorite trail, or doing anything that requires much physical exertion. I am afraid those days are over. I am not sure that my doctors would say the same thing, but I know. I can feel how far my body has declined in the past months. I know it is not purely deconditioning, as I try to do things (as you have read), even simple enjoyable things.....and I can no longer participate in them. So, it isn't for lack of trying. And, as I have now realized, that trying can put me down now for days......so, I have to realize, at least for now, and maybe forever.....what I used to think of as fun and socialization....may be over.
So, today.....today is a new day, with a new attitude. And, I was just sitting here wondering what I was going to do today. Planning my day, as it were. The thing that surprised me, is I don't think the day is long enough to get in all the things I want to do....and I mean things that I CAN do. This is exciting and wonderous to me, especially after the crash of yesterday.
So, what is it I can do? Well, I am in the middle of a book that I have been reading, and that is nice as for a few months there, I could not even read. So, that feels like something I would like to do. Of course there is my art work. I am working on a new yarn painting that I am very much enjoying. And, for those of you who have read the first chapter, and have encouraged me to continue....I have a book to write. I also have a number of movies that I have recorded onto my DVR that I need to watch soon, or they will POOF! LOL....
I am also hoping to start a new painting. Well actually, two. One of an image a friend took while visiting the US from Australia. It is an amazing photo she took at the San Diego Zoo of a wolf that she got to howl. She used photoshop to place the wolf into a very cool setting. She sent it to me to see her photoshop work, and gave me permission to paint it. I am very excited about this!!! The other, is a line from a poem another friend wrote. The line blew me away with it's imagery, so again, I asked permission to attempt to put it into a visual image, and she gave me her blessing.
AND THEN...he he...see!!!!! Of course, after taking that encaustics class (that I still can not believe what a generous and beautiful gift that was) I want to set up a studio to continue to do this work. I really should not spend the money (although, I am half way there because of my batik background), but one of these days, when I believe I can drive that far....I will go into Montpelier and get the needed supplies. I am VERY excited about that! Hmmm, maybe that is something I can get my social worker to do with me...hmmm??? LOL.
I do know though, that after taking that class, and the crash and pain that followed....I will have to work very slowly. But, that is the beauty of that medium...it allows for that.
So my friends.....if you see me heading down that path of feeling like because my life has changed so much, I am a different person, with nothing I can do any more.....remind me. Remind me that life is good, and needs to be documented...hence this blog! I know that many of you out there reading this have similar issues. I know your body has changed, has become something that seems so out of control, so foreign that you don't know what to do with yourself, well.....just sit, allow....know that the answer will come. The hopes and dreams that you had may not be within reach any longer, but there will be new ones that come into our lives. Be patient, they will come. (yah, I know, that is kind of odd for me to say, since yesterday, I thought my life would never have joy in it again, but see, see how fast it can turn around) he he he he!!!
Of course there are going to be bad days. That, I think, is unfortunate and inevitable. There will be days when the pain, the fatigue, the weakness will take over (as one friend who has Dercum's Disease calls it "the monster"), but it is temporary. Remember to hang on, to reach out (especially to those who love to laugh....muchas gracias to my late night friend and cousin calls last night)....and to remember, that even when you don't think anyone does or can.....you are loved. If you can't think of anyone....please remember this, and think of me!!! OK? Is that a deal?
Now, off to make my day one of creative fun, creative expression, along with the required rest!!! which even that at times can be a little more creative than I want (dreams).....LOL
I love you all, nameste!!!
I just woke up. I wish I didn't. (I don't mean I wish I would have never woken up, I am not that bad off!!!) I finally got some very good consecutive hours of sleep, but now I can't move. I am so very tired of this. I am waiting for mommies little helpers to kick in. I am really hoping they do fast, as I would love to get up and do the normal morning things....like brush my teeth. Because you see, even that is not possible. Well, if someone was in my bedroom with a gun to my head saying "you better go brush your teeth". I supposed I could muster the fortitude to go do it then, but right now......nope, not a happening thing!
The pain is what stops me, and the stiffness. I actually woke up around 11:30am (ok save your judgement, I didn't get to sleep until almost 3am), and then it took me about 15 minutes of tiny little movement to try to get my back to not spasm. When I finally accomplished that, I had to work on massaging my upper left arm, which has suddenly become a place on my body that needs attention, cuz if I didn't, it would just feel like there were rocks in there, and I can't move it. Finally at about 12 o'clock, I was able to reach over and take the pain meds. (the arm that needed work is on the side of the bed that needed to reach to get the pain meds). Also, there was no way, that arm could have held onto and raised the bottle of water I have with me at all times, to even take the meds.....so after the massage, I can do these things........waiting for the meds to kick in.....
so, while waiting, I need to focus on my legs. They feel as if not only had they completed a marathon run, then some person came up and bashed them to bits with some heavy object. Not to mention that they are so swollen, that just moving them is like trying to make a water balloon fold and bend. So, I lay here and do similar motions that I did with my back....tiny little movements, ones that don't make me scream. Then they can get larger, until I am almost to the place where I think I could swing them over the bed and sit up. Of course , the back is still thinking this is a very bad idea, and tells me so.....but I don't listen!
I sit on the side of the bed and look down at my feet. (ok, I gave this some consideration, but i decided, I am including a picture of these things that are called feet. Then you can get some idea of what it is I am talking about, I guess as you will see, it is more my ankles that look very swollen, but don't let that fool you, the feet are in pretty bad shape too) They no longer look like the feet I used to look at and think, "my you are ugly feet" (face it, how many of us really have pretty feet?), but now they are feet that look like they belong to some other creature. They have lumps and bumps and swellings (but I still have those cute almost non existent toes they are so tiny, but now they seem to be wanting to lay on top of one another, weird). Anyway, I am sitting here looking at my feet because I have to give them a pep talk. They know what is coming, they know that when i step down on them they have to carry all this weight (they wish I would lose some of this weight...I agree with them, but you know, I blame part of that on them, they are the ones who walks with me to the refrigerator, so it is their fault too!!), but I digress yet again.....ok, I am just talking to those feet, begging them to allow me to stand up, and to do their thing. I actually have to tell me knees the same thing.....so here I go, I am going to try....
Good thing there is a wall very close that holds me up when the freaking feet and legs decided not to. Yep, I am there, holding onto the door nob that kept me from falling down. Apparently the feet and legs (oh maybe that is what is wrong, I just talked to the knees, I didn't say anything to the whole leg, especially my thighs, they are the ones who have been very naughty lately. They are the culprit for much of this pain...how could I forget......well, they didn't let me, as here I am now leaning on the wall, hanging onto the door nob, and wishing I could fly or at least just hover. Wouldn't that be nice....but, I really don't want to have to clean up after myself (if you get my drift), so I decided that I have to say "feet, don't fail me now"....and I include the rest of my body along with that. And I walk like a combination of Lurch, on the "Adam's Family", and a drunken person wobbling out of a bar after way too many, " just one more" cocktails. This would be kind of funny to watch, if it wasn't me, and it didn't hurt so damn much. I get to the place where I get to sit. (wink wink) Or in my house "the throne of undivided attention", as this is where all my animals come to get petted. Long standing habit, and quite funny, I think. It doesn't matter if I have just been sitting with one of them on my lap, I head there, and so do they, circling my feet (the small ones) and my beloved Keefa, my dingo.....she always just sits and smiles, or sometimes I even think it is more like laughing at me. (you know, you could do that same thing right outside, really, you don't have to sit on that cold hard thing, you could just go pop a squat right out there behind that door, silly human)... But, the throne of undivided attention has become a "thing" in my house.
Ok, now I have to either try to do things like brush teeth, comb hair, wash face.......but as I am standing up again, i see that is not a happening thing. So, I hang onto everything I can, and I lurch back to the home away from home within the home...the bed. Ok, here is where it may get sad....for those of you who are actually reading this (first I need to wonder why?, and second I say "oh wow, thanks for actually reading this"....but if you don't want to hear a sad little pitty party rant....skip over the next color...cuz here it comes....
I get back in bed....and I decide while I am waiting for that which makes me half human to course through my veins and allows me to do things like brush my teeth, and wash my face.etc........I would just get on the net, look to see what has happened during the night....what are my friends up to: I guess I shouldn't have done that. You see, I had the most excellent days for the last two days, and that is not to say today could not turn out to be good too.....but, I started looking at friend's who have posted pictures of all sorts of fun things. Out doing things with their families, photo's from vacations, pictures of our engagement, look at the beautiful wild life around my house,. Then I start reading.....hey going to bread and puppet, come on up and meet us up there, or there is a great party happening at this restaurant, would love to see you there, and we are heading out to the lake, if you are not doing anything, you should come on out. And, what do i do....I cry. I sit here and I sob. People, i would love to join you at any one of those places, I wish I was out taking pictures of wonderful things......but people, I am sitting here hoping that when enough of the stupid painkillers kick in, I will be able to go brush my teeth. It just hit me hard today. I am not even taking pain killers which have this huge stigma, and whole issue of people wondering why I take them, or if I need them......and here I am taking them, so I can walk to the bathroom to brush my teeth. I am not liking this picture. Not one little bit. I am so overly aware that there is a world of wonderful things to do and see, even right down the street from my house is our farmer's market....and here I am. Now, this does not come with just an oh poor me rant.....this also comes with a whole side order of fear.
I wrote the other day, about the most generous gift I have ever received, and that is the art class I will be taking tomorrow. I am going to go, even if this is the way I will be feeling......in fact the generous gift came with the admonishment....."you are not going to end up being a no show are you" so, I will go. But, if I am feeling like this, if the pain level is off the charts (which many days the pain meds just don't do a thing for)....then, yes I will be there, but no I won't be there. I will be disassociating to get through it. Yes, I am not liking my life right now, and I am thinking....it isn't fair. This girl just wants to have fun, This girl just wants to brush her freaking teeth! This girl just wants to have a family that goes on outings to fun places, and laughs and smiles. This girl just wants to accept invitation (which are getting few and far between, as I can rarely go to things anymore) to parties and dinners and lunches out, this girl wants to travel and take photos and send them back to show people where I have been and the fun and exotic things I have done. This girl just wants a body that is not the cause of daily anguish. This girl is mostly thankful for a very strong mind that gets her through this failing body. This girl is tired, but this girl will not give up! (this woman also knows that it is not ideal to call a woman a girl, but it is a play on the theme of Cindi Lauper's "Girls just wanna have fun")
Ok, rant over. Pain Killers are starting to make me think that teeth brushing may be coming right up on my day's activity planner. And I am excited to get back to the art work I am doing. Yesterday I went over to the coop and got some edible pea pods, and some Annie Goddess dressing, and I am going to have a yummy lunch of those, and some left over chili from my favorite unnamed little cuban food trailer that I call a roach coach (which basically that is what they are called in larger cities, but a friend of mine thought I was putting down his place of establishment, so a disclaimer.....I am in no way saying that his food or his trailer is bad, or dirty, in fact I think anyone who lived around this area should go check this guy's cuban food out, it is sooooo good), and I may even talk on the phone to a friend who has recently come into my life and makes me laugh...so all is not lost. But, I do yearn for a more active life. I used to have it, and I miss it. Don't ever take your ability to move easily around on this earth for granted. Be grateful for a body that isn't constantly shouting at you, or reminding you that your new life is one of watching, of waiting, of wishing, of hoping. Be grateful if you got up this morning and brushed your teeth, and didn't even give it a thought!
PS: It is now 2:30pm, and I am about to get out of bed, and finally go brush those teeth. It has taken the pain killers this long to finally kick in, and allow me to move with some ease. see, this is my life...again, please don't think I am telling you this because I want any sympathy (I know I say that a lot, and it isn't that I don' think a little sympathy is a good thing, but it isn't my goal in writing any of these pages, and if it ever is, I will tell you!), but it is for an understanding of what it is like to have a body that makes just the activities of daily living freaking hard. A group of us are on a committee that meets early in the morning. There have been times that I get up and get ready, and then no one shows up, as they have been canceled and someone forgot to call me. Now, I hope by reading this, I can help some of you understand why, for me and others like me, that the simple act (for you) of getting up and getting ready to leave your house.....is not so easy for us. And, because we did that....the rest of the day just may be shot. If you would like a better understanding of this, google the spoon theory. (or you can find it on www.butyoudontlooksick.com ) This gives a very good understanding of those of us who live with very little energy in our "bank" has to go through every day. so, again reader, if there are indeed any of you out there, thanks for taking the time to read this, and hopefully learn what it is like to live with chronic pain.....or, that you have a kindred who understands your daily struggles. Strength of mind and will be with us!!!! Peace and compassion with everyone, this world needs a whole lot more of that.
