Well, Slap Me Silly!

Saw my wound care doctor today. Instead of moaning about the two worsening wounds on my posterior, I'll cut to the chase. I've been in total denial. I can't say this never crossed my mind, because it has, many times, but I never let it stay for more than a second. I just mentally flicked it away like it was a pesky fly. But Doctor Bennet said something that brought the thought back, and I wasn't able to swat it away this time. He said that healing up my wounds wasn't going to be a problem, but if anything anything was going to keep me from getting the orthopedic surgery to straighten my legs, it would be the hidradinitis that has caused a bunch of open sores to stretch the width of my abdomen. 

I knew that. I wouldn't admit it to myself, but deep inside I knew it. And since there is no cure for hidradinitis except for excision, which the surgeon has already declined to do, that means all my plans and hopes for some kind of independence would be stopped dead in their tracks. It's not as if that's happened but I believe, in all likelyhood, that it will. There's a slim chance they'd do it anyway, but that's not a realistic expectation.

What to do, what to do?

Suicide is not on my list of possibilities, but I don't know how I will cope if the door to my greatest hopes, hopes that I hold onto for dear life, is slammed irrevocably in my face. I'm not certain just how far my strength and courage would stretch. It hasn't happened yet. Don't worry about it. I wish I could follow that advice, but too much is at stake. I truly hate the way my life is now. If I really believed that it wouldn't be able to get better, that I would have to face years more of living this way.... It's inconceivable. I'd feel like I had been diagnosed with a painful disease that would stretch out interminably -- no treatment or cure, just pain. I already have one of those kinds of diseases. I really don't know if I could handle two.

So, I feel kinda dumb for not facing this probability. It's best that I do, though. I have time, now, to explore possibilities and think about how I'd react.  Make plans, so to speak. Don't take that as an ominous foreshadowing of what I have in mind, OK? I really don't have anything in mind. Little Miss Hopeful, here, is still rooting for getting the surgery. 

So I guess it's even more important, now, for me to refocus my attention on something which I have some control over. And the only thing I have any control over is my mind. And my upper torso and my arms and hands, which is a considerable advantage over not having any control over them. But I have to tell the truth. I'm worn out, mentally. I just want to lay back and listen to some music, maybe some reggae. I used to love dancing to reggae. Now I just dance on the inside when I hear it.

Dance and love and laugh, my special spirit friends. I will strive to do the same.

Violets vs Violence

Last night the 3-11 shift went by. At about 8 i asked to be turned from one side to the other. This is supposed to be done regularly, to avoid getting bedsores again. I also asked that my colostomy bag be changed because it was getting pretty full and I didn't want to take a chance that it would spring a leak or overflow.  Also, every night I'm supposed to get "peri-care" which is cleaning the areas of my body that are warm and moist, and have Nystatin poweder applied to avoid developing yeast infection.

So I pushed my call button. One of our newest aides answered. I told her what I needed. She told me she'd never changed a bag before. I offered to teach her how. It's not awfully complicated. If I could reach the supplies and was at an advantangeous position so that I could see what I was doing, I'd do it myself. She said, no I couldn't teach her because the nurse had told her not to and she was alone on the hall. So she left without trying, or doing anything else.

The bag was finally changed at around 11:30, by the aide on the 11-7 shift. She was not happy. I was not happy. I never got turned until the 7-11 shift the following day. The peri-care was finally done about 24 hours after I asked.

I'm generally a patient person, but I have zero patience with this. No matter how bad the other two nursing homes were where I lived before, my absolutely necessary care has never before been simply ignored to the point where I have been utterly abandoned. Yes, I complained, and intend to report it to the Director of Nurses. I don't want to become a grouchy old biddy, but this was just too much.

Last niglht I took a trial subscription to Gaiam TV. It has a lot of videos about spirituality, and since I'm interested in spiritual matters, I watched a few videos. I watched two, parts one and two, of an interview with Ram Dass after his stroke. I could very much identify with what he had to say, and it gave me cause for some deep thinking.

It's possible I have attached myself too thoroughly to the idea that I must, above all, regain as much independence as possible. I've had the conviction that if I can't become reasonably independent, then there's nothing to live for.

But what if, instead of exhausting myself by beating my head against circumstances I have no control over, I, instead, look for the positive things that go along with them. I have been given the rare gift of time to myself. Free time. Quiet time. If I couple this with my writing skills, what might I accomplish? Never mind that I don't have a clue what to write about. I can practise meditation in earnest. Used to be ideas would pop into my head while I walked. It was things like tall, dry winter grass, bending in the same rhythmic dance of the north wind that would set me off.. Can't do that anymore, but maybe I can discover a world inside me to take my inspiration from.

I am struggling. Oh, how I am struggling. But I haven't given up.

So I choose the gentle, vaguely fragrant path of violets, growing my spirit slowly as I nuture my soul by learning and opening myself to inner knowledge that is rarely taught in books. I vow to leave the Quixotic forehead-banging of situations I cannot control and leave my angry frustrations behind. It won't be easy and I'm not certain enough of myself yet to be consistent, but I promise myself that when I inevitably lose my way, I will strive to find my way back.

That's about it. I love you all and wish you to find whatever life path is best for you.

Lavender will do, too.

Squinting Until My Forehead Hurts

This is what happens when sadness overwhelms me and I cry and I can't stop. All I can see, 360 degrees around me, is the barren wildernesss that has become my life. What's the point? What's the effing point to life when it it is full of nothingness? I still don't see suicide as the answer but there is Nothing -- NOTHING -- that makes my life worth living. I've been holding onto hope that my life will get better,  with a firm grasp at first, then ever more loosely with each realization that nothing has gotten better, just worse and worse and worse until I'm barely holding on by the edges of my fingertips, wondering if I should end the pain and let go. I don't want to let go. I don't want my life to continue like this anymore, either. I've long said that a person never knows how strong they are until they have to be strong. I feel like I'm on the verge of finding out where my strength ends.

All I want to do is sleep. I have such interesting dreams. Last time I dreamed that I escaped from a mental institution with two other inmates. I was a young man, about 18, with severe depression. My companions were a large schizophrenic woman who was very angry and aggressive. The other was a thin man in his 30s. He had a black goatee, tons of tattoos and several piercings. He never spoke. We stole an old RV. They sat in the front, and I stayed in thre back. Slept some. Since time doesn't exist in dreams, we went through several places. Once, we met up with a motorcycle gang, and the goateed man left us.

Eventually, the large woman left, too, and a bunch of young people around my age joined me. We made it to Alaska, where I have never been. The road was so steep I had to drive very slowly and the others got out to lighten the load and to enjoy looking at the scenery while they walked. We made it to a valley down the other side and stopped to look back. It took my breath away. There were two peaked mountains and centered between them was, I thought, the moon, bigger than I had ever seen it. Then I realized it couldn't be the moon. It was blue, with swirls of white over it. I was elated. I felt so incredibly free. Just as I was wondering if it might be the Earth, a nurse woke me, poked my finger and gave me a shot of insulin.

What a letdown.

It doesn't take a genius to know what my subconcious was saying. Or was it my guardian angels giving me a message? It was all about escape, of course. My fondest wish is to escape from my helplessness. That's what I've been struggling for. And that is what I've been failing miserably at.

So here I am, still stuck in my wilderness  of nothingness, seeing no goals to work toward, with the spectre of hopelessness eclipsing whatever light I could still glimpse. Lost. If I don't find a way to change this situation, then somewhere between where I am now and where I'm heading, I will come upon an invisible abyss that cuts through my path like a sharp knife slides through skin. And, as my next step hovers above that chasm, I will, once again, have to decide whether to step away, or to step off that cliff.

I'm not there yet, but I sense it's too close for comfort.

Tomorrow may be better. I might see something rising out on the horizon that helps me find my way again. That's my inner hope, calling from some distant place deep inside me, to not give up. So I'm still following that dim ray of hope. It's flickering like a flashlight when the batteries are about to go out, but it's still there.

I hope this hasn't exhausted you like it has me. Sorry about that.

Watch for the sun in the morning. Be well and happy.

Doing the Limbo

I'm neither there, where hope lives, nor there, where the grasping fingers of despair keep ypu ensnared. I'm floating somewhere in the middle, feeling neither. It's an effective defense mechanism. I've used it many times in my life. Sometimes it worked to support me. More often, it proved to be detrimental to me. But right now, it seems to be working for the better. Somehow it's not entirely blocking out love or hope. They're faded versions, to be sure, but their lights have not been extinguished altogether.

It's the best I can do, under the physical circumstances that retrain me so completely. I cannot move forward independence, due to the many wounds, lesions and developing or healing abcesses my body now fights. And I may as well be tied down to these circumstances because there's nothing I can do.

Hence, I retreat into limbo land. Good thing I have developed tolerance and patience. Things are so much better since I decided to let go and just float along, following the river where it chooses to take me. Once I find myself in a place where I can find a toehole again, I'll dig in and stop floating. But, for now, I'm a drifter. I know where I want to go, but, so far, life isn't leading me there. Thrashing has done more harm than good. A couple of times I felt like I was about to drown and wasn't so sure that was a bad idea.

But suicide is not amongst my choices right now. While I believe it's a reasonable option, should life become intolerable, at the moment suicide is unthinkable. It would be like watching an exciting movie, then leaving before it was resolved. I want to see how this story ends. I'm interested in what happens next.

So I am, in my own little way, feeling good. I have people to love and, though some of them are part of short-term relationships, like my therapist, I'm happy to spread love his way, too, for as long as our relationship lasts. He's a sweet guy who deserves to have a little affection offered his way.

I am at peace, for now. Not contented, exactly, but OK for the moment.

I wish I could wrap up these feeling in a box with a bow on top for every one of you to open. That would be beautiful. ❤

Just Imagine -- Life Without an Alarm Clock

I don't have an alarm clock. Don't need one. I just realized how cool that is. This is the reason I didn't post a blog entry yesterday. Was it yesterday? I'm not sure. I just fall asleep when I get tired and wake up when the Wound Care nurse starts poking things into the abcess in my chest. Being in slumberland as I was, I practically jumped off the bed screaming. Well, I couldn't jump out of the bed due to my physical Limitations. But I could scream, which I did, loudly and long. I know she doesn't mean to hurt me. She's a very sweet person. But, for some reason, when she's the one tending to my wounds, I seem to yell a lot. The other wound care nurse barely squeezes a tiny chirp of pain from my lips.

Alas, I have developed a new wound on my bottom, but it's not too bad so far, so there is hope it will heal quickly. Also, a painful small red spot has developed in the middle of my back, exactly the same place where painful red spots which developed into abcesses have appeared before. I call foul. The abcess on my abdomen is still weeks away from healing. No fair adding to my misery. I want to have a severe talkin to withwhomever is in charge of this. I want to ask, what's the rush? Since we've already healed up two abcesses on my back, why don't we just judge the two jobs well done and forget about the third time? 

As for the new wound, it was coming loose along the scar tissue for awhile. I'm pretty sure that the two new aides who gave me a shower last week pulled the skin near it while she was trying to turn me in the most narrow, hardest plastic shower bed that Satan, if he exists, could ever devize. And if Satan and his minions exist, I blame old age on them, because nursing homes would be the perfect place for them to lay low. It's not the fault of the people who work here. They truly do the best they can. But you know... hardly anyone sees rats, for example, just their deleterious droppings and the results of their busy little rat workings.

I am NOT saying we have rats here. Not even a hint of the tiniest mouse. This is a good nursing home. The best I've been in, anyway, and it's miles ahead of the other two I've been a resident of. 

So how did I get on that subject, anyway?

There's another subject I want to approach. If you're a friend of mine on FaceBook you may have noticed me post a status update about whether or not to become a prostitute in my nursing home. I decided against it. I'll let some of the older ladies take a shot at it.

(Hint: this never has and never will happen. This was just a bit of FaceBook silliness, so don't get me kicked off FB, OK?)

Saw my therapist Friday. Last two times I've noticed he's looking kind of rough, so I'm a tad worried about him. He has respiritory problems. Sometimes he has trouble breathing. I wonder if the cold weather is negatively affecting him. I make sure there's no deodorizing spray or cologne in the air in my room when it's time for our session. Probably not good for him. I'll ask him next time I see him, assuming that I do.

Time to stop and find other things to amuse myself with until I succumb to my sleeping medicine.

Good-night, all. Happy dreams and perfect tomorrows.

Actually, it's a group portrait. ❤

Breaking of the Dam

Sometimes I just can't cope. I feel physically weak, all tingly down my arms, like you get just before you pass out. Only this has been going on for more than an hour. The nurse took my vitals which were all good except for a glucose level of 300+ and high blood pressure. Seems I'm ultra-stressed out. Completely overwhelmed. Don't want to cry, but can't stop. Jeff is supposed to drop by tonight after teaching his class to bring me some diet Dr. Pepper and give me a much-needed hug. I'm a mess, so I must pull myself together before he gets here. He's the one who needs comforting, not me.

The nurse gave me some medicine. I'm out of my anti-anxiety med, so I hope these help. Wouldn't want to have a heart attack or stroke from high blood pressure, after all. That would be very bad of me.

I apologize for this weepy, straggling mess of an entry. Time to distract myself with some Bones episodes and relax. I want to DO something, but that's impossible, so it's time to seek refuge somewhere other than my brain. And some place where my heart doesn't hurt. If only there really was a place like that in this lifetime.

Be well, my sweet friends. Be kind to yourselves and each other. I love you.

 Eventually, there will be respite. I just wish I didn't have to leave everyone behind to go to the place where I can find it.

On the Flip Side

I had a think-fest last night and decided that i was going to stop thrashing ard flailing around t

Into this raging river of frustration I've been drowning in and stop beating myself up by trying to control things I have no way to control. My abcess is doing wrll, though it will probably take several more weeks to completely heal

I got up in my chair today, which was extremely pleasant.i snagged the lady from the business office and got a huge surprise. Now that I am a "skilled" patient, Medicare is covering my room and board. I get to keep all my social security, at least for now. I'm too cynical to think that this will last, but I'm going to spend some,on necessities, then save the rest.Then I took a shower and was feeling pretty happy

Then I got a call from my ex. He was talking very fast. He said, "i'm not going to be able to isit today because I flipped the car. He said he was ok. I thought, who can flip upside dowm in their car and be fine? He said he would go to the ER to get checked out. I hope he really did that.

I was extremely upset and worried and was literally wringing my hands with agitation. The nurse gave me some medicine snd I calmed back down to a level where I could relax.

Then the wound care nurse replaced a bandage on my posterior, took a look and said, This looks terrible!" She explained that I'd had a short red line along the scar from where my plastic surgery scar is. Now, she said, it's all open andd looks awful.

I'm breathing in a deep breath and exhaling a huge sigh. It'ts always something, it seems.

Here's a picture of Jeff's sad little car. It makes me terribly sad., but I'm happy it wasn"t any worse.

May you all live and travel with love and safety, my friends. You are precious to me.

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