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Tuesday, July 31, 2012

Rushing to Judgement


I’m trying not to rant too much about what happen with Amanda, my (now former) caregiver.  But she came by today to take me to an appointment which I scheduled on her normal day off and pay for out of pocket.  It’s the same cost as a taxi and much friendlier; and I don’t have to wait around.  Well worth it for the occasional times I need it.

She came to the door, we looked at each other and both started crying.  Then we hugged and held on tight for a good two minutes.  We sat down and talked for a bit about what her options are now.  The provider told her they would give her a reference.    Of course, all they will do is validate the times she worked there; they can’t say anything unless it’s a glowing recommendation.  And they know it.

I am still in a bit of shock.  She is the kindest, sweetest, most caring person I’ve met in a long, long time.  She is sympathetic without going overboard, empathetic without being cloying, and ready to jump in and do anything I ask.  My pain levels have actually dropped since having her around.  Much more so than the two other people they sent while she was in training.  One quit anyway.  And the other one, I don’t want back.  Tomorrow is the day with the woman who’s older than me.  What a joke.  I made it clear I don’t want anyone older than me, but they don’t seem to care.  Nor do they care that my pain levels dropped with Amanda.  And I'm the client....the one who needs the help because of pain.  It's suppose to help me, and it did.  It was like having my sister here except she did things my sister wouldn't do, lol.

At any rate, we talked about what happen, and she swore there was nothing else on her record but the two driving things, one of which happened when she was 16 (she didn’t have a license but the person she was with had been drinking so she didn’t want her driving….she should have gotten a metal, not a ticket)  Now, in retrospect, with the advantage of some years of experience, she should have called a taxi.  But she was sixteen.   The agency doesn’t care about the reasons; only the offense…which again, was over 12 years ago!!!  And the more recent one; going through a yellow light, was four years ago.  Lord have mercy, no one should be working there if those are their standards.  She even TOLD me about those things before they fired her.  It came up because of the yellow light she stopped for.  I would have gone through it, but she explained why she didn't.  I don't think my supervisor believed that's how I knew, but I don't give a darn.

I hope she finds another caregiver agency soon because I will gladly switch providers to have her as my caregiver.  The agency isn’t interested in my desires, and I think they would be too embarrassed to admit they jumped the gun on the woman, and lost a valuable employee in the process.  Rushing to judgment seems to be the favorite pastime for some people.

Monday, July 30, 2012

Disappointing News


I just got a call from Amanda’s supervisor telling me they let her go.  Something in her background check apparently.   I am so upset I could cry.  She and I were a perfect fit.  She had the right amount of energy, she did what I asked, she is kind, funny, nice to be around and an all-around good soul.

I didn’t ask, although they kept telling me they couldn’t tell me (why).  Frankly my dear, I don’t give a damn (why).  All I know is the past is the past.  She did tell me (today as matter of fact) that she once went through a yellow light and got a ticket four years ago.  She told me because the light in front of us turned yellow and she stopped, put her arm out to protect me, and apologized for stopping, telling me why.  She also got a ticket when she was 16!!.  And they told her those were the reasons...nothing else.

The supervisor’s supervisor, whom I called, said that the Patriot Act has made it tough to keep good people….”it’s always the good ones that get let go” was what my supervisor, told me.  Really?  I find that interesting.  In the meantime, the person they sent to replace Amanda when she was in training (they spent a fortune training her, let her work for a month and THEN did the background check?  She told me some of the stuff takes a while to come back.  Seems to me if you have a computer and about $35, you can find anything out pretty fast) had a back brace, a leg that bothered her and could barely move the vacuum cleaner.   Another person was okay, but she quit.  And then there was the no show one Friday.  In my opinon, if they are following the rules of that damn “Patriot Act” which is anything but, they will never be able to keep anyone.  And one of the people that came to me admitted she wasn't a citizen...but had a work visa.  Hmmm.  That I would like to find out.  Undocumented workers would be more of a problem for them, I would think.

The supervisor’s supervisor told me they have to be careful about the driving thing because they are taking clients around.  Again, it happened a long time ago…..if there are things I’m not privy to, so be it.  But Wednesday they have someone lined up who is OLDER than me.  I’m willing to give it a chance, but if this keeps up with this provider, I will call my caseworker and have her find another provider for me.

Watch…suddenly, they’ll decide I don’t qualify for the help.  They’ll have a real battle on their hands if that happens.  I don’t go down easily.  Not with this disorder. Not after fighting for every crumb I have.   As I have posted at the top of my blog:

There is no chance, no destiny, no fate that can hinder the firm resolve a determined soul – Ella Wheeler Wilcox

We have got to do better than this.  I will be using Amanda for rides to King County, which they don't do anyway....wish I could afford her more often then that.  Rushing to judgement based on our past would put me in the slammer.  The "Patriot Act" is one of the worst mistakes of Bush's dismal presidency.

Thursday, July 26, 2012

Adjusting


I had a visit today from my new social worker; they switched on me.  So many people to remember.   Someone who does the financial end, someone who arranges for the help, and the social worker.  They sent me a letter that told me the day of my check will be different.  That’s fine.  But the cost of my care (my out of pocket) is going up by $100 because that’s how much I was paying for Medicare and now I’m not paying that.  So basically, it’s robbing Peter to pay Paul…doesn’t help me financially, but doesn’t make it worse either.  That starts in September.  Whoopee.  Getting adjusted to this is a challenge.  Keeping track of the hours my helpers come so that I don’t get charged for time not given…..and Margie, my social worker, told me today that if you don’t use it, it doesn’t go to the next month…so I lost a day last week when no one showed (just a mix up…Amanda was still in training) I told her it was fine, but I wanted to make up the hours.

This is so effing hard for me to accept.  I have written that I didn’t know how much I needed the help until I started to get it and that still is very much true.  My pain levels have been ghastly (as my friend Ted says) but having someone help with the cleaning, the shopping, taking me to appointments; that all keeps the pain at about a 6 instead of a 9.  I have horrific days still; and my leg is getting worse (I see a surgeon in a few weeks about a tumor on my left arm and I’m going to ask him about the one on my right leg).  So it’s good that I have the help but I’m still struggling with shame, embarrassment, fear (that it will all disappear) and anger.  Thank heaven I still have my therapist.  On one hand, things are better, on the other….you know.

I was reading Huffington Post nonstop right up until that horrific shooting in Colorado.  I had to stop reading it altogether because it was making me nuts.  Between that and the upcoming election….I’m over the top. 

So….time to practice gratefulness, awareness of others’ misfortunes, being thankful for what I DO have; a roof over my head, food in my belly, people in my life who genuinely care about me (family, friends) and of course, Oliver.

Sunday, July 22, 2012

Rising to the Top


With all that is happening in the world right now, I haven’t felt much like writing on my blog, though I’ve posted the address on Huffington Post a few times.  The pain has been through the roof again and reading about what happened in Colorado hasn’t helped.   There is much debate about guns, violent movies, etc., and the ‘constitutional right’ to own the kind of firearms this lunatic carried.  I doubt that our forefathers had envisioned this when they wrote the second amendment, and I doubt it would have happened at the opening of a Jane Austin movie.  But that’s just me.  Sigh.

I have an appointment to see a surgeon in a couple of weeks about several tumors I would like to see gone.  One on my arm, and one in each leg; they all have grown quite a bit and hurt like the dickens.  We shall see.

Lots of stuff has been rising up for me lately.  It is all connected to the help I’ve been getting.  Ana cleaned so well last time she was here I was actually crying.  I am a neat person, though not neurotic about neatness.  I just like things tidy.  But the deep cleaning I never do because it’s just too hard.  So the place needed a good scrub; she cleaned my ceiling fan, washed the bathroom floor, dusted, etc.  It was sparking when she left.  She also quit working for the provider who contracts with DSHS.  My regular person, Amanda, comes back on Monday and I am really looking forward to seeing her again.  And I’m hiring her to take me to a couple appointments over the next two weeks.  These are appointments that fall on a day she doesn’t come, so I’ll pay out of pocket.  But it’s the same as a taxi, and I’d rather have someone there with me.

I know I have written about isolation and how that feels…but I shut down in order to deal with it.  We all do that over issues that are difficult or impossible to change.  So until I started getting the help and having someone here when I need them, I just didn’t get how deeply it hurts to be alone all the time.  Day after day, hour after hour.  So it’s great having someone here a few hours a week for several reasons.  The help and the company.  I mean, friends do stop by and visit, but when you’re out and about in the world, being alone is welcomed….I always tell people who are busy and feel they have no time for themselves to switch it around….the time they spend working, cleaning, shopping, meal prep, being with family, etc., etc., is the time I spend alone.  And vice versa. It’s rather stunning.

My left leg hurts something awful, and I do believe it’s a very large tumor that’s doing it.  I’m kind of freaked out about it.  Don’t know if I want it out or not.  If it’s grown a lot (I’ve never actually had an MRI of that leg…or the other) then it needs to be looked at. Otherwise, leave them be.  Whatever it turns out to be, I will not be treating it.

The fruit paste remedy is still working.  I take a lot less of the Miralax.  I’m not completely cleaned out, but no one is.  I can live with it this way.  As long as I empty something every day, I feel better.


Monday, July 16, 2012

The Road in My Head



Anna (pronounced  Auna) the woman who is taking over for Amanda while she is in training, just left.  She took me to the store, came back and scrubbed down my apartment.  She did much more than they say she would do; like deep cleaning.  I didn’t really ask, she just cleaned by bathroom really well, and boy did it need it.  Then she vacuumed and tidied up the kitchen. 

We had about 30 minutes left of her time with me, and I gave her something to drink (not alcohol) and we sat and talked.  I showed her pictures of my family and she talked about herself and the fact that she is from El Salvador (she’s legal and has three kids that were born here) but she misses it and may go back.  She works her tail off and I know they don’t pay much.  I wish I could give her more but I can’t.  I already pay $300 a month for the help, but it would be a lot more without Medicaid.

I didn’t realize until I started getting the help how much I really needed the help.  Just going to the store wears me out and causes the pain to shoot skyward at light speed; there’s hardly energy left to put things away and clean.  When I do vacuum, it hurts like the dickens.  Even taking my recycle out (it’s a bit of a walk from my unit) makes my legs burn with neuropathy.  I was in tears talking to her about it.  But not in a “poor me” kind of thing.  It was more like embarrassment and shame.  Shame that I need the help at my age (like that has anything to do with it) and embarrassment that I need it at all.  It makes me want to crawl into a hole.

I know there are others (in fact, one of the replacement helpers had a brace around her lower back under her shirt which she showed me AFTER I had asked her to do something that would have been too hard for me….lifting something.  IF I had known she had the brace, I never would have asked her to do it) with worse problems than mine.  Still, I beat myself up all the time.  And then I swing to the other side, wishing I had a partner in life who could help me with these things.  I feel guilty that I need it because of the economy, and then I go down the very dangerous road in my head…you know the one.  Sigh.

I want to be strong and I give prayers of thankfulness every time I buy my groceries, put them away, make my meals and all else that is living.  I thank G-d for the help I’ve got, for my family, my friends and the strength that it took to get this far.  I want nothing except freedom from pain….but as Stephen Levine writes: “Freedom, as it motivates us toward our natural state is great joy: the desire to be free from things the way they are is great suffering” 

For me, there are few truer words.

Sunday, July 15, 2012

Just Stuff


Hi there, whoever you are.  I’ve not been writing much lately.  I’m in horrific pain and I’m just tired all the time.  I spoke to my friend Ted; I’ve only talked to him twice since he moved in the nursing home.  He wants me to call on weekends only, and with all my activities; mountain climbing, bungee jumping, roller blading and my favorite, lying flat on my back and reading, I just don’t have the time.

No, really, he sounded pretty awful.  He said it’s so noisy all the time he can’t stand it…he puts in his ear buds and listens to music, but he can’t get Wi-Fi so he can’t get on the Internet (he rarely did so anyway, but he would like to download more music).  Food is awful, no friends….I just wanted to sob.  And it frightens me to death because my legs are all but gone now (how can you have numbness AND pain?  Talk about torture….I could teach torture techniques….grow tumors on the spines of the enemy).

They’ve been paving and painting now that we finally got summer in the Pacific Northwest.  AND we had a thunderstorm the other day.  In the 26 years I’ve lived here, I remember about 5, and that’s it.  In Minnesota, we had them all the time.  I didn’t even recognize it as thunder.  I kept asking my caregiver what the noise was and she kept saying “thunder” but I didn’t see lightening so I thought it was the workman making noise.  It was supposed to be cloudless and sunny the rest of the month, but of course, it is overcast and rainy today.  But it started this way yesterday and cleared up so who knows.

I have still been celebrating my birthday…my sister came over last week, and a friend the other day.  It’s nice, this belated celebration stuff.  I wish I felt well enough to go out and celebrate, but seeing friends means the world to me…at home or elsewhere.  I went out with a friend last night and am paying dearly for it today.  Tomorrow, I have a list a mile long of things to get done with my caregiver.  Haircut, shopping, bank…..for me, that’s a lot.

If you haven’t heard about Aimee Copeland, Google her and read her remarkable story.  She gives me strength….and I feel guilty at my moaning and groaning…then again, I’ve been doing this for 30 years of my 59 on this planet.  Probably much more when you add in all else that has gone wrong.  I just can’t believe my body is still working at all.

Wish I had more to write about….be well, be happy.

Blessings

Wednesday, July 11, 2012

Painless Planet



I saw my therapist today and blurted out that I fantasize about being taken away by aliens to a planet without pain.  She looked at me and said “You should write about that” So I’m going to try.

I understand that we are here to learn and having a life that is too easy doesn’t help us with our spiritual growth.  But enough, already.  So I think.  But who really knows?  When my body is screaming in agony, when the tumors hurt as well, when I can no longer feel my feet, when I get dizzy even when I’m lying down, when a million other slings and arrows keep me from doing anything considered normal, from grocery shopping to going out with friends, that’s when I want to cry “Uncle” and be done with it.  One way or another, done with it.

I read about people who face horrible situations and do remarkably well.  This gives me hope and courage.  But knowing there will never be an end to the pain is difficult.  I’m not even sure it will end when I’m dead.  It’s true, I won’t have a body; but we know almost zero about what really happens after death.  Sure, people have had near death experiences.  The key word is “near” death.  While many have claimed to have actually died and there is medical proof of that, we in fact don’t know beyond what the monitors tell us.  And what the patient tells us.

I once sent a woman into the light.  Long story, and I wrote it somewhere on this blog, can’t remember what I called it….maybe “first encounter”.  So I am a big believer in the afterlife.  But if this planet isn’t going to help me with the pain (and our ridiculous policies about treating those in pain) then I want to go somewhere that will deal with it in a real, healing way.  And yes, I’ve tried a lot of different things; acupuncture, Reiki….so far, with limited results.

So, when I see movies like “K-Pax, I want to fly away somewhere and get fixed. But I wouldn’t want to leave family and friends behind.  Not that this will be a choice I’ll have to make anytime soon.  But who knows?

I just don’t have the energy to even write much anymore.

Blessings

Friday, July 6, 2012

Yelling at the Stars

Here’s a thought:   This morning, after my sweet maintenance man from our building (he really is a doll) came by to move my car for me (they are paving and I can’t hoof back) I noticed I couldn’t find my cell phone.  Anywhere.  And I knew it wasn’t in my car because I hadn’t been in it for a while.  Then I remembered I actually went in the back seat to get something last night and I had the phone with me.  I had looked high and low before the memory came back.  A friend had come by and took me to the mailbox.  I had it then.  So I had two places to look.    Before calling Verizon to put a hold on my phone, I was ridiculously upset.  In front of the woman who helps me and who, until this point, thought I was fun and easy to be with.  She saw an ugly side to me today.

So here’s the thing.  I noticed I got AS UPSET about the stupid phone as my MRI.  Almost zero difference, except the phone thing was a shorter upset.  I started to think about our emotions, and how it really doesn’t matter what the issue is, whether it’s serious or banal, we do what we do unless we become aware.  See, whether it was a potential scary news about my MRI (won’t get started on what I consider to be “good news” but you get the idea) or a lost phone, we can go out at night, shake our fists to the sky and yell our brains out at the starts.  Then watch to see if they move.

The Universe doesn’t care.  I did not write “G-d” doesn’t care (if he exists); I wrote the Universe doesn’t care.  It doesn’t.  It just does its thing, and we do ours.  But I’m hoping to do mine better.  I’m working on becoming more aware FIRST and save myself the aggravation of flipping out over silly and serious things and hoping that in the long run, it will lessen my pain.  All my pain.  Physical, Emotional, Spiritual…..all of it.  All the time.  From my lips to G-d’s ears.


Just Sway with the music in your heart





Thursday, July 5, 2012

Oh Boy, Oh Boy


Oh boy, oh boy.  I just got back from the dreaded doctor appointment to hear the results of the dreaded MRI from Monday.  I don’t know whether to laugh or cry.  I predicted it right on.  He could see “no significant changes….some, but the tumor and realized the fentanyl seemed to really help the pain, I started to think the increase, we are talking MAJOR increase in pain is due to the fact that the meds just are no longer effective.  Period.

The neurologist (today’s doctor) told me he told my pain doctor to try something different a YEAR AGO and he never did.  Or we talked about it and he poo pooed it.  Either way, I need to make a change sooner than later.  So I talked to the pain doctor’s nurse, who I like, and I have an appointment at the end of the month.  She could have gotten me in sooner, but it was an impossibly early time so I turned it down.  I never really use the break- through medication so I’ll start doing that.  BUT, she indicated the pain doc might not want me off what I’m currently on for some reason. 

I don’t know; I would wean myself off of it myself but I’m going to wait and see what he says.  I’m thinking the patch might be an answer, used in conjunction with another med the neurologist suggests to him which he never gave me.  I know the pain doctor knows more about drugs than the neurologist, but I can’t believe he’d leave me on something that is like taking a tic tac except that it is destroying my body.  I mean, come on!   I know he’ll take me off it; it’s just frustrating to hear her say he might not want me on the other one.  Something has to change and soon because I truly am at the end of my rope. I talked to the doc about all my other physical changes; the dizziness, the headaches, the horrible, ghastly constipation/diarrhea cycle.

I go nowhere.  I do nothing.  I have help three days a week for three hours each.  I rarely see anyone.  I’m bored, I’m miserable, I’m isolated and I’m in pain.  Much of this is my fault; if I had let myself fall in love a long time ago, maybe he would still be with me.  Maybe I’d have someone at my side, helping me along the way.  Besides my “helpers” from the other side who have no bodies, which makes taking me places difficult.  I read Huffington Post; I read books, though my concentration is trashed.  I can’t stand this much longer, I swear.  I am mediating daily but again, concentration is not good. 

Well, that fruit spread thing I wrote about yesterday did kick in last night…..actually, it kicked in at 1:30 in the morning.  Yeah.  It was ugly.  Details are not necessary.  And I haven’t taken Miralx since Monday, so it was the spread only that did it.  I had a smaller amount this morning.  We’ll see how it works.

In the meantime, the maintenance guy from my building knocked on my door at 7:30.  My car was parked in the rental office area (where they said I could leave it for a few days.  Seems they are paving THAT area today….so he had to move it (I wasn’t in any shape to move it myself).  He said he’d TRY to get it back in the office area tonight (before someone grabs it late at night when he’s gone) because they are paving my area tomorrow and it can’t be where I usually park it.

The fun never ends.  For the normal person, this is an inconvenience only.  For me, it’s a major “figure it out” project.  Oh well.  I just keep thinking of Aimee Copeland and all she must endure…but she will get to the end of it, eventually.  And she’s young…..she has a great attitude, a great spirit and lots of family support.  That means everything.

Blessings

Wednesday, July 4, 2012

Conscious Sedation


Okay.  I had the MRI.  I see the doctor about it tomorrow.  The conscious sedation worked wonders.  I was awake but groggy and thanks to fentanyl, not in pain.  Plus, they made sure there was something soft for my back because the tumors hurt like heck lying on my back, which of course, is my best position.  And it went for TWO HOURS.  Yikes.

So yesterday, I was thinking about it and it occurred to me that all the increase in agony could just be that my pain meds no longer work.  I phoned my pain doctor, spoke to the nurse, and I’m scheduled to go in anyway at the end of the month (they only see patients ONE day a week, which is kind of crazy but there you have it).  I’m very worried about the bowel thing; nothing works at all anymore.  She told me about this recipe for people on opioids called “Yakima Paste” which you can find at:  http://www.cancerlynx.com/fruitpaste.html   My helper owed me two hours so she was here on Tuesday….she went out, got the ingredients and made it for me….from going to the store to finish took a little over an hour!!!

I’ve been taking it as recommended (2 Tbs daily) and so far, nada.  But I need to give it time.  I told the nurse, gosh, this sounds find for your average person, but how will it help me?  She said it is specifically for opioid users, but I think it’s for short term use….not years on end.  But, who knows?  I’ll tell you what…it tastes fantastic!!!  It’s prunes, figs, raisins, lemon juice and brewed senna leaves.  I spread a bit over peanut butter on a slice of toast, or I eat it off the spoon.  Yummy, really.  I’d put the whole recipe here but it’ll be easier to just go to the site if you’re interested.  That way you can print it out a bit more easily without cutting and pasting, etc.

So, tomorrow my neurologist to read the MRI and tell me once again, “no change, bye bye”   With my increase in symptoms, I can’t believe that is the case, but again, it could be that the drugs only purpose now is to constipate me.  And it’s working find for that!  Unfortunately, it’s not what I want.

Sunday, July 1, 2012

Dance Me

The song “Dance Me to the End of Love” by Leonard Cohen is going through my head, especially the line “Dance me through the panic ‘til I’m gathered safely in” I know the song is about the panic of love, but I am panicking about my MRI tomorrow. Trying hard to stay focused, to meditate, to let go….all my tricks aren’t working now, I can’t imagine what tomorrow will be like.

I have never panicked while having an MRI, but my symptoms are so much worse, the pain is so much worse that my fear is right up there in the “10” area.  I should be invoking the spirit of my deceased grandmother who taught me about death like no one else.  And I was only 11 at the time.  As for the living, I should be invoking the bravery of Aimee Copeland, that Georgia woman who defied the odds and not only lived through her ordeal (Google her if you don’t know about her already) but is getting out of the hospital months ahead of schedule.  She is one brave cookie, that woman.  Of course, she’s 30 years younger than me and has been dealing with this for two months.  I’ve been dealing with it my whole life.  Don’t compare, don’t compare, don’t compare.  It’s a killer, comparing!!

So….focus….breathe.  In, out, in out.  Think of good things.  Give thanks. Let spirit in through any and all openings.  Ask yourself, when you panic (I’m using the Royal “you”) “What am I afraid of?” and take whatever comes up.  I fear that the increased pain and tumor growth is a very bad sign.  I fear I will end up in a nursing home with no control over when I can take my pain meds.  Whatever the purpose of this life of mine, I fear I did not fulfill it.  The only thing I don’t fear is what most people fear the most: death.  I do not fear that at all.  The cause of death worries me.  The last few years have been slow and agonizing, but I’m grateful for certain things;

A roof over my head (thanks to my father)
Food in my belly
Access to medication
Friends
Family
Oliver
Good books
Good movies
My helpers on the other side
My helpers on this side: Amanda, Alexandra, Divanna
Strangers who smile at me
Strangers on the Internet who write incredible things to me
Love
Flowers
Sunny days (rare, in Seattle)

Think of things you are grateful for.  Then be grateful.  And less angry.  Anger makes pain worse, trust me.

G-d grant me the Serentity to accept the things I cannot change
The Courage to change the things I can
And the Wisdom to know the difference



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