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Thursday, February 28, 2013


Well, it took almost two hours with the caseworker.   I never would have been able to do it alone.  She told me most people get in overwhelm and then they don’t do it at all, they lose their benefits and they have to start all over again.  I can’t imagine.    I just hope she did it correctly because she didn’t sound so sure about some of it.  Now I wait for a phone interview.

Pam just left.  She was coughing up a storm and I sent her on her way.  My prescription which was mailed Monday still isn’t here.  And I had another fight with the pain doc nurse. She flips back and forth on “rules” and then flips out on me.  I had called to tell her the prescription for the missing pills still wasn’t here, and by the way, I’ll be down to three patches tomorrow.  That was the agreed upon amount, giving the new prescription nine days to get to me.  I need that time because of these screw ups (last time it turned out it hadn’t gotten mailed and I fear that happened this time).  Now she SCREAMED at me that “six days” was enough (it’s not; my pharmacy needs 24 hours to fill this particular script) so call when I’m down to two, not three.  She’s a lunatic.  And you can’t argue with her because the non-sequiturs just keep pouring out of her mouth.  I mean, I’m talking about the script not being here and she launches into something completely different; our normal schedule.  So now I have to call her twice.  To let her know when the one for the missing pills comes, and again on Monday to let her know I’m down to two patches.  I guess she loves these moments because she told me the only other way to do it is for me to come there and get them.  She’s pushing me to do that, even though she knows it’s beyond hell for me to do so.  I do really like her most of the time, but sometimes I think she’d be better suited doing something else  Working with people like me all the time has got to have an expiration date.

In the meantime, I spoke with my neurologist about the trial for shrinking tumors and although I’m not a candidate, he wants to see me in the next couple weeks because I said the pain management thing wasn’t working very well.  They would love to see me go away.  If they can’t fix it, they just don’t know what to do.  I get that. 

The good news is I had a couple good days this week, and for that, I am grateful.  But at 4:30 this morning my walls started shaking like someone was pounding on them.  I peered out my bedroom window and saw about six cops standing around.  They didn’t look particularly concerned about anything and I couldn’t tell who they were here to see.  Maybe they were banging on my door by mistake.  Who knows?  I hate those kinds of disturbances.  Normally, I would never look out the window like that, but there was no screaming or anything, just loud talking.  It took forever to fall back asleep, and when I did, I dreamed a cop was pointing a gun at me, telling me to go with him.  Disturbing, those disturbances!

Monday, February 25, 2013

Shrinking Heaven

I have been having a challenging time lately.   First, my caseworker is coming over this week to help me with the reapplication process I mentioned earlier.   Secondly, I had a bunch of extra expenses this month and am down to the wire until I get my next check.  And finally, for the first time in 12 years, a bottle of one of my painkillers went missing…I could see for some time I was down pretty low, but thought (KNEW) I had more.  It’s nowhere…so one of two things happened (I cleared the pharmacy): I’ve been robbed by someone or I accidentally tossed them out with the recycle.

I didn’t notice until now because I’m very conservative.   It’s a month’s worth gone and my pain doc is not too happy, to say the least.  She made me promise I’d get a lock box.  They will send me more for now, and in two weeks I renew everything.  It better be in the mail soon.  Pam has been picking them up, but the nurse told me I need a way of knowing if the bottle has been opened before it gets to me.  I’m thinking a strip of tape that once broken, can’t be fixed.  I hate thinking this.  And she knows she is under suspicion.  It will never be quite the same.  But I really trust that it isn’t her.

The pain has been brutal, and someone sent me this link; Living with a rare disease, making a difference -  (it’s a disorder, not a disease…these errors in the media drive me nuts) which talks about a new drug that is supposed to shrink tumors.  I heard about a study in mice, but didn’t know there was one for humans.  Apparently it’s a cancer drug being used off label (which is how I used Neurontin for years before it was accepted by the FAA to treat neuropathy).  So I put a call into my neurologist.  If the tumors could shrink, it would be sheer heaven.  Their growth has been sheer hell.  Alas, I just learned the trials are for a very specific tumor; Schwannomatosis

When I hear negative talk for too long I want to tear the head off the person speaking.  And right now, I can’t get one positive thought to step up to the plate.  Nothing interests me.  I heard the Oscars were on Sunday night but I literally haven’t been to a movie for over a year….the Oscars didn’t interest me much when I saw movies; now there was no need to tune in.  I don’t give a rat’s behind about not watching the Oscars, but it was another reminder of how much my life has changed.  How my tumble down the abyss is moving faster and faster.  Too fast for my higher self to catch my spirit from the fall.

I don’t know what to do anymore.  It’s too much at once.  I’m physically, mentally and spiritually buried under tons of concrete.  I know shiT happens.  I’m just not equipped to shoulder any more.  Over 30 ago, I was at a stop sign and there was this church on the corner.  On their announcement board, it read: “If your burdens are too much to bear, stop bearing them”   Guess it caught my attention for a reason.  I was in bad shape then, too and moved to tears.  It still gets me.

When I first heard this, it saddened me to be alone.  Then I listened with different ears and saw G-d

Sunday, February 24, 2013

Death After Birth

I changed my patch yesterday and today the pain is through the roof.  I don’t know why it fluctuates like that.  Technically speaking, there should be no break in the pain level because it stays at x amount of ml for 36 hours.  But generally, the day after I put the patch on is better.  Today it’s as bad as ever.

How strong am I?  Is that what the Universe wants to find out?  And what about everyone else, especially my young friend Ashley, only 22, who deals with these issues as well?  All these questions that swirl around in my fevered brain, trying to make sense of it all. 

I started thinking about the possibility of our birth and what we call“life” which could, actually, be death.   And what we call death or the “afterlife” could actually be not just a return to the world to come (after our life), but life itself.   Our true selves, our true life.  So we came from life and will return there.  It’s a word game we developed, to make the “I” inside the body feel more important.  The self, the id, whatever you wish to all it.  I mean, how many of us remember where we came from?  Some claim to, just as some claim to have a near death experience.   Some even claim to have “died” and visited the world to come.  I think they were visiting the world where they came from and will go back to.  Or, their brains just did its thing and they saw and experienced the ultimate altered trip.

All I know is that being encumbered with bodies, whether they work well or not is confining, to say the least.   Especially when they don’t work.  When they leave us in agonizing pain that cannot be controlled or the myriad of other things that keeps our souls from experiencing mobility and inner growth.  Or perhaps, the immobility is what makes us grow.  Lucky me!

Meanwhile, back on Earth, I am running crazy low on my breakthrough meds….I don’t understand that at all.  There are days I don’t take any and days I take 2, but I am supposed to take 4-6 a day….and I NEVER take more than that.  On really bad days I’ll do 4 but that’s it.  I am going to have to start counting them because the pharmacy may have shorted me.  My pain doc WILL NOT like this development, though it has NEVER happen in 12 years so hopefully, they will give me a pass.  Pam, my helper freaked when I mentioned it because she picks them up from the pharmacy and some other person she works with told her she will get fired, I’ll blame her, yadda yadda.  Poor woman just called me and started asking me questions about the pills and if I found them and I asked why she was asking me all these questions and she told me.   It took me ten minutes to calm her down.  I make sure everything is there when she gets them, but I don’t count pills.  And she doesn’t know where I keep them anyway.  Live and learn.

Thursday, February 21, 2013

Re-apply or Lose It

Stress doesn’t begin to describe it what I’m feeling right now.  Just a few days ago, I was telling someone that if I had to apply for the help I’m now getting, I would be physically unable to do it.  And guess what?  I just got notice that I have to re-apply and I will lose all benefits by the end of March if I don’t send it all back again.  One of the things is a copy of my birth certificate.  I get that some things may change for some people, but I doubt that part would change.  What HAS changed is that I’m getting worse.  I can’t hold a pen to fill in the application.

So I called my case worker and she’s coming over next week, but I still have to run around town and re-do everything I did a year ago.  THEY JUST DON’T GET IT.  I told her I’m in so much pain I CANNOT do this stuff. So she suggested a family member help.  Not gonna work, especially in their time frame.  Pam can help me with some of it, but why, for instance, I can’t give them my bank statements by downloading it off my computer, I’ll never know.   They make you go to the bank and get it and apparently, they can tell the difference.

Breathe.  Must breathe.  It will all work out, but I hate the process.  And I do understand that in many instances, things change for the better for people.  I’m just not one of them.  Pam said she’d be here the day my social worker comes so she can answer questions she may have and confirm the kind of help she’s giving me.  They know anyway, because she has to let them know what she does for me every week.

This is the hardest part of being in a health situation that requires help from the state.  Admitting it is perhaps the worst, but staying on top of everything when you are in horrible pain every day is beyond words.  When I have a problem with a bill that’s wrong, or something fairly “simple” but needs my attention, it’s very difficult to handle emotionally.  People used to say to me, “Well everyone deals with the gnats in life” True enough.  But not everyone deals with it while in intractable pain that, on the 1-10 scales, hovers around a 7 most days.  So when I am asked to re-do everything every year it’s daunting, to say the least.

I am grateful that I have it and I do consider myself lucky, I really do.  It’s just that when these things come up, I want to have a life partner that can help me with the day to day challenges of chronic, intractable pain.  Oh well.  Oliver gives me snuggles and kisses and for that, I am also grateful!

Friday, February 15, 2013

Thank You

Thank you, G-d, for my “5” day today!  I was able to go to the store, though it got bad for a bit while I was out.  Relatively speaking, it was an amazing day.  And it helped that the sky was blue and the sun was shining.  High pressure is usually, but not always, better.  And I changed the patch yesterday.

For all the griping I do when things are dark, the pit is deep and my tears well up but seldom fall anymore, I need to acknowledge the good days too.  And today was one of those.

So thank you and please forgive my trespasses, my impatience with my situation, and my desire to move on before it is my time.  And thank you for the food I ate today, and for the yummy chocolate!   

I've used this song before, but it's fitting again today.   It's Karen Drucker singing, but I have no idea who those people are....a You Tube thing

Back and Forth

I went to the store yesterday morning after I changed my patch. Big mistake.  I went with Pam, but I still should never have left the house.  I almost blacked out the night before as I went to feed my cat.  I had two bouts of diarrhea earlier so I’m guessing my electrolyte balance was off.  So I slugged coconut water.  But this morning, it almost happened again at the store.  Luckily I had my coconut water with me.  I’ve been drinking that and Gatorade like crazy. The pain is so bad it feels like (what I imagine would feel like anyway) I’m buried on piles and piles of large, heavy rocks and chunks of concrete.  All below the waist.  My feet feel like rocks and sand are inside them.  Nothing interests me anymore.  Not books, movies, music….even writing.  Even the drumming is difficult, though I keep trying.

My mind is always racing and I’m always planning my demise.  Arguing with myself constantly about whether G-d exists, and if so, would He give a hoot if I took my life.  I mean, what does He expect of me?  Why am I being tortured physically, mentally and emotionally for so damn long?   Why am I shown so little mercy?  And if there’s nothing but blackness, then what kind of fool have I been to stay for so long.   The not knowing gets me every time.  I know I’m far from the only one with these, and far greater, challenges.  But that kind of hammers home my point.  Why?  

Coupled with that, is the added confusion of why I freak out at nearly passing out twice in less than 24 hours and all the other scary new challenges..  With every new symptom should come joy and abandon, not fear and loathing.

Just trying to sort it all out, put it out there, and let everyone know that those thoughts are all part and parcel of chronic, intractable, uncontrollable pain. Regardless of its cause.  Not to hog the pity potty (oh, why not!) I was watching television show on Netflix about a theater company and my mind went straight to how much I miss that (theater), and from there it was but a stone’s throw to all the other things I haven’t done in over 10 years and sometimes, never (okay, I went to a movie a couple years ago) and will likely never do again:  fly in a plane, go to a play, sit in a park, go camping, eat out for more than 30 minutes, sit for more than 30 minutes, have a big party (not that I ever did), see Europe, fall in love.

And yes, I am still grateful for the roof over my head, the food in my belly, access to medicine (even if it doesn’t work half the time), people I love who love me back, a view of my hummingbirds, books to read, movies to watch, music to enjoy and a blog to drive everyone crazy. 

This nonsense just popped into my head:

Back and forth, Jack and Jill, up and down, take a pill
Night and day, sun and rain, good and bad, endless pain
Young and old, right and wrong, wet and dry, life too long
Cats and dogs, alive and dead, boys and girls, sick in bed
Hot and cold, old and new, light and dark, here I stew
Rich and poor, sick and well, friends and foe, together in hell
Pish and posh, piss and moan, hot and cold, leave me alone
Earth and sky wind and fire, trust and suspicion, death to desire
Slings and arrows, nip and tuck, cops and robbers what dumb luck
Black and blue, red and white, tears and joy, an endless fight
Life and death, sticks and stones, good and bad, I want to go HOME

Left out the last two words at the end there.  Sorry.  Suns out; feeling better

Tuesday, February 12, 2013

Methadone Day....Again

I got lulled into thinking I was done with withdrawal days and boy, it struck yesterday with a vengeance.  Not to mention the pain was a 15 on the 1-10 scale.  I was in agony and crying my eyes out, screaming at G-d and wanting out in a big way.  I took some Tylenol for the withdrawal symptoms which usually helps; not this time.  This time, it was beyond the pale.  So if any of you are on methadone for the pain and want to switch because it doesn’t work (what really does?) be prepared.  On the up side, my healer, the acupuncturist/chiropractor/energy work person (Divanna) told me my body is much looser and responds better to her work than it did when I was taking that drug.  In the end, it’s worth it, because it allowed me to have some semblance of a life for a long time.

But the pain is better today.  Compared to yesterday, anyway.  But compared to someone who doesn’t have to deal with this, I’d say it’s a 6 on the 1-10 scale.  I can live with a 6.  But if were like it was yesterday all the time, I’d check out in a heartbeat.  What fools these mortals be!

Yesterday, in the throes of agony, I was thinking about just that.  How a healthy person can suddenly drop dead from some undiagnosed something or other, and everyone they loved is in shock and mourning.  One tumor can kill.  But hundreds and hundreds of tumors can “just” cause agony for years and years and not kill you.  I don’t get it.  Apparently, I’m not supposed to get it.  I tried drumming yesterday….it’s been a few days….and I couldn’t get to where I wanted to be, spiritually.  I wanted an out of body experience just to get out of pain for a few minutes.  That sometimes works.  Not yesterday.  Maybe today.

The gastro problems persist.  Slugging down the Miralax and Lactulose like crazy.  Always works for a while then stops.

One of my prescriptions is no longer covered under Medicaid….I’m terrified this is the start of a trend.  Luckily, it’s a prescription I can try going without.  It’s to prevent bladder infections.  I called my urologist and they called back and said to try and go without it, and if it didn’t work, call Medicare and try and convince them to cover it.  In the meantime, I have enough to start immediately if this doesn’t work.  Today is my first day without it.  I take natural things too anyway.  Cranberry tabs, etc. 

My expenses have gone up by about 20% this year….and the first few months of the year are awful.  My tabs are due, and considering how little I drive, its nuts.  Plus I need to do the exhaust test this year, so that’s another $15 on top of the tabs.  EVERYTHING has gone up.  Except what I get for disability.  That did go up a little, and Medicaid took the whole thing for my helper!  It’s now over $400 a month!  I know that’s cheap for 15 hours a week, but I don’t always get the hours, either.

And so it goes…..

Friday, February 8, 2013


I mentioned somewhere along the line that my sister and brother both told me to watch “Breaking Bad” on Netflix, as it was a great series.  I had never seen it because I don’t watch much television.  And I don’t get that station.  I watched the first two episodes and wasn’t sure I wanted to continue because I thought the message was to glamourize drug use, but they both said no, keep watching.  I did, and it is an incredible series which will be ending this summer.  I think it’s a good idea because having watched it all except for what they haven’t shown yet, I don’t think it has anywhere to go.

Anyway, I got curious about methamphetamine and started watching a National Geographic special on the drug.  Here’s what I don’t understand.  It is an upper.  Way upper, like 6 to 12 hours of high.   It makes you anxious, jittery, sometimes violent and a bunch of other things that I associate with a panic attack.   And because I need to take a bunch of horrible things for pain control, I do know firsthand what addiction is like.  In my case, it’s physical addiction only.  Getting off the methadone (not the same thing) was hell, but I am not the least bit interested in starting it again.  It never made me high.  For a while, it controlled the pain.  And that’s the major difference that people in the DEA (whose agents don’t hold medical degrees to my knowledge) don’t want you to know about.  When used for pain control, none of this stuff makes you high, including marijuana and hashish.  They control the pain, period.

It’s because we are tricated slowly up the ladder until we get some relief.  Then we stay there.  Then we come slowly down the ladder when it ceases to be effective.  It’s that tricating that keeps us from getting high.  The first time I used methadone, a very small dose I might add, I had hallucinations.  It scared the hell out of me.  I talked to my doctor, cut the dose in half, and continued to move up until I got relief.  So initially, there’s a buzz, I guess, but when you are in agony, that is not the goal.  The goal is relief.

How much of the documentary is accurate I don’t know.  The “before” and “after” pictures of meth users are daunting, but I don’t know how true those are either.  I will assume they are, rotting teeth and all.  But it makes me angry as hell that people with perfectly healthy bodies would do that to themselves.  Did I smoke weed when I was younger?  Yes, very occasionally.  Now I smoke it for a different reason and I pray to G-d every day that I not have to do so.  I would give anything not to need it.  But angry as it makes me, more than that, it scares me.

I mean, is there such little hope in our (mostly) youth that they would choose this over tackling life head on?  Has MY generation ruined it for our children with our politics. I’ve started watching Netflix’s movie “House of Cards” which is a remake of the BBC version and I kind of wonder why I’m bothering….all I have to do is go on Huffington Post or watch the news….it’s art imitating life, not the other way around.  How sad, that people feel there are so little choices why not kill themselves with drugs that they do not need, should not take.

And isn’t that the kicker?  Those that REALLY have no choice would, in almost every case, throw the demonic drugs in with the cat litter, while people who are healthy and have a choice, snort, smoke and shoot their way out of their bodies.  Well I want out of my body as well.  And I have a choice to make every day.  I can choose to cry and curse or to listen to my drumming, read and watch movies (or documentaries on drug abuse…lol).  I can call a friend and talk, or talk to G-d and ask for help.   Sometimes I get it, sometimes I don’t recognize what I get.

And sometimes, I just keep falling.

Thursday, February 7, 2013

Coming and Going

I had two very tolerable days today, and now the pain is back with a vengeance.  Oh well.  Doesn’t help that I am looking at about $800 in bills and that’s not counting everything else you need (like food).  And one of my drugs is no longer covered by Medicare.  That’s two now.  I had another knockdown fight with Comcast, those vultures.  They lie through their teeth, leave out information, tell you what your bill will be and say the word “total” but forget to mention taxes, which increases the total by about $40 each month.  I always tell them “Total with taxes” when working out a plan.  They are a monopoly where I live and I’d drop them in a NY minute but it is unlimited long distance and where I live, its long distance to call my brother and sister, who are about 30 miles from me.  My home health care went up, my dental insurance is due and it’s time for me to have an eye exam.  My eyes aren’t good and I was thinking about making an appointment when I got a reminder in the mail that it was time.  One of us must be psychic.  Or psychotic.

So this week “Bones” did an episode that mentioned NF.  They got the facts right, but they made it appear like only children where effected (showed children, complete with scarves on their heads, in some sort of hospital ward) and that they were all near death.  At least they said it was more common than a lot of other disorders/diseases.  Of course, NF is not a disease, it’s a disorder.  I do wish they would have mentioned and shown adults with NF.  All that mis-information is what keeps it in the dark.  But I was glad to see it tackled on television.  I got a notice from CTF about it; otherwise I wouldn’t have seen it.  And I understand that changing the name from Neurofibromatosis Foundation to Children’s Tumor Foundation may bring in more money with the word “children” in the heading, but adults should not be swept under the rug, either.  Showing someone like me, living in horrific chronic pain, or someone like one of the people who posted a response on Facebook, saying her husband left her because she looked so awful with all her tumors (I have a male friend whose wife left him for the same reason) is important.  People need to get it about NF.

I am so wound up today I could scream.  Between all the fighting with Comcrap and finding out another prescription isn’t covered I’m a tad over the top.  See, that’s another thing I used to hear all the time.  People would tell me that everyone has these challenges and I need to relax and chill.  Well, everyone does have those kinds of challenges, it’s true.  Not everyone has them coupled with demonic, mind numbing pain.   Throw that into the mix, and the fun is just beginning!   But, I listen to my drumming, read, watch a movie (Netflix, not Comcast) and try not to freak out and go dark.

Monday, February 4, 2013

How Much to Share?

My sister came for a visit today, bringing with her a yummy scone from a place called Pomegranate.   I heard lovely stories about her incredible daughters and loving, (younger) husband.  I wish we lived closer so we could do it more often but I sure appreciate what I do get!  My brother has been down with the flu or some awful upper respiratory sickness.  He is supposed to go back to Minneapolis to visit our dad this week, so I told him to stay home and get well and visit me on his return.

What’s hardest for me is knowing how much to share with my family regarding both my symptoms and my feelings about my ever degrading health.  I used to hold back because they would try and “fix” it, as they all feel so badly about it.  It’s not that now.  They know it can’t be fixed, they know that all I need is an ear on occasion.  I mean, I have my blog and they could be reading it, I really don’t know.  I share what I do on this blog because other people are going through the same thing and it’s good to know you aren’t alone.  Of course, we don’t want other people hurting; it’s not like we read it and think “Yea!  Other people are in agony!” Being isolated physically is one thing; feeling isolated from the world because we think we are the only one with this or that ailment is quite another.  Before the Internet, I’m sure it was a million times harder emotionally.  But I digress.

When I feel like the men on the chessboard have stood up and are telling me where to go, or feel like I’ve eaten some kind of mushroom and my mind is moving low,, when logic and proportion have fallen sloppy dead and the white knight is talking backwards, and the red queen is “off with her head”, it’s then, that I have trouble remembering what the dormouse said (feed your head).  Had to borrow a little from “White Rabbit” there, sorry.

Anyway, when I feel this way (last paragraph) I always start questioning whether or not it’s worth it.  Any of it.  My sister and I actually laughed about that today.  Laughed.  It felt good.  I was telling her if this is all for naught, if after we die, that’s it….why the hell did I stick around in demonic, uncontrollable, unstoppable pain coupled with horrific gastro-intestinal problems, hearing loss, breast cancer, acelasia and a thousand other issues, the most expensive being teeth issues which I don’t even want to bother with, AND my expenses have gotten so out of hand because the cost of keeping Pam has gone up by about $40 a month, my cable, which is minimal had gone up by $30 and will do so again in six months (my only extravagance and I don’t even watch the damn thing….but you need to”bundle” to get cheap phone and Internet rates).

Anyway, that’s the catch 22, isn’t it?  There would be no ‘someone” to yell at when it’s over.  Just blackness.  I mean, how many of us remember what it was like before we got here?  Raise your hands….I see one guy in the back….oh wait, he’s wearing an aluminum foil hat of some sort, never mind.   What’s the point?  No really, what’s the point?  Takers?

Oh hell, both my sister and I have had too many spiritual experiences to know that’s not true.  She thought she was dead when her car spun out of control on the Interstate one winter; she said everything slowed down, she was at peace, she saw her first husband (deceased) and felt the presence of G-d.  And you all know about my experiences….or some of them.  If not, there here somewhere.  You can tell by the titles.

I’m tired now.  Must drum.

Saturday, February 2, 2013

Game Changer

Do I betray my soul by thinking my body has betrayed me?  After all, my soul (assuming I have one) doesn’t give a fig about my body in terms of whether I won the genetic lottery or was born with a lemon.   It just wants to advance spiritually and it needs my body and mind to do that.   Kind of a mish mash of spiritual thinking but there you have it.

I spoke with Ted this morning.  His hospice experience hasn’t been great so far.  The comfort part is a better than being left in the hands of the nurses at the home, but they only come twice a week...  And they keep lowering his pain meds, claiming he’s “too thin” for them to be effective.  So he’s in agony all the time.  I mean, he as before but now it’s even worse.  We cried together on the phone.

I get so mad.  I changed my patch today and I swear, it isn’t making a bit of difference.  I am in agony.  I am most of the time, with the exception of a one day reprieve every 8 or 9 days, if I’m lucky.   But when it happens, all I can do is feel scared to death of what I’ll feel like the next day.  Because the pain comes back with a vengeance.

This is such a struggle for me. I have to be knocked out silly to get any relief, but the constipation issues keep me from taking too much of the breakthrough meds.  I pray for strength, I pray for relief, hell, I even pray for faith.  It all falls on deaf ears it seems.

The question of “being punished” for some deed I did in some other life haunts me.  But part of me thinks it’s just a crap shoot, with me getting the crap, or the lemon, in the genetic lottery.  No wonder I’ve never been a big lotto player.  I wanted my blog to be a positive experience for people, but it wouldn’t be honest if I kept it light and lively.  I try to add music and make it fun, but mostly it’s a true account of the day to day life of someone in chronic, intractable pain.  And you know what?  It doesn’t really matter WHY I’m in this kind of agony; tumors for me, some other horrible disease for someone else.  I read about people with other health challenges, some a lot worse than mine, but it comes back to being in agony.  One cannot function in agony.  It’s all I can do to stay here.  I wish I didn’t have that hang up but I do.  With luck, I’ll get brave one of these days.

In the meantime, I’ll take my drugs, do my drumming, read, watch movies, take care of Oliver and pray it will end soon.  Actually, it’s way too late to be soon.

The stuff we make up (including religion, afterlife, G-d) is enough to drive me ballistic.   I mean, people’s experiences that can’t be explained (including mine) could be anything.  We attach meaning where there may be none.  And once we find out (we as a civilization) for sure that all those experiences originated in the dark corners of our brains, it will be the biggest game changer since life began.

Friday, February 1, 2013

Bowling Ball

I am glad it’s Friday because the week has been challenging and the pain pretty bad.  Not to mention the gastro problems.  I went to a local GI doctor and she said the same thing that they all say; there is nothing anyone can do short of the occasional barium enema.  Sounds like a blast, doesn’t it?  The doctors just don’t get it.  Bulk to my system is what junk food is like to other people.  It stresses my system because my muscles don’t work.  Spinal cord degeneration. 

I tell people to think spinal cord injury when I tell them about my bowel issues, but most people don’t think about how much a problem maintaining bowel function is to someone with spinal cord issues.  She did say I should use the Relistor (the shot) on occasion.  I told my pain doc nurse it didn’t work the last time I used it, so she thought the constipation was not due to opioids’.  In fact, I’m thinking the Fentanyl causes more constipation then the methadone.  And the GI doc disagreed with the pain nurse.  She said I may not have been as backed up as I thought I was when it didn’t work.  So maybe I’ll try it again the next time it’s really bad.  The problem is I ALWAYS feel like I am constipated.  Because of the tumors.  They push on my spine, but buttocks and give the sensation of a bowling ball being stuck down there

She also said diarrhea won’t hurt me.  Didn’t mention electrolytes, which I thought was odd, but I had volunteered that I drink Coconut Water so maybe she knew I had it covered.  My weight isn’t as low as I thought it was; hasn’t changed much from the hospital stay in September but at least I haven’t lost any more.  And my appetite is up and down.  As are my emotions.   I’m trying really hard not to freak out by the day to day worries of what will be next for me.  There is just now and now and now….right?  Didn’t I write that?  Why don’t I listen to myself?  I think the pain does a number on my head.

My computer guru hasn’t been here for a while and I was thinking about him yesterday and then he called last night.  Weird.  That’s like the third time that’s happened.  I think about him, he calls.  Not unusual to happen occasionally, but I almost never see this guy and then “poof” he’s on the phone to me.  I haven’t had a computer tune-up since I bought the thing almost a year ago now; I keep up with the diagnostics on it but I need an expert once in a while to make sure it’s humming.  I’m just rather broke these days.  So many expenses.  The cost of my help has gone up as is everything else.  But I don’t want my computer to crash so I guess I need to have him out here.  It’s cheaper than fixing it when it’s broken.

And my supplier for my now legal in Washington state marijuana, the dependable and non-addictive break-through med, is a sweetheart who fronted me some because I was out.  And truly, it takes away the pain much quicker than the opioids’.

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