One More Child

Not one of my more uplifting pieces, so skip it if you want to read a positive post

The days are long, the nights longer, when one is in pain 24/7.  When, after years of opioid medication, nothing seems to reach out and touch the pain but rather, it only makes all of my systems worse and no longer operational.  It is official: I now have a neurogenic bladder and bowel.  The fun never stops!  I try and breathe, rich in the knowledge that if done correctly, it does help a little bit.  But with my heart rate and blood pressure high after decades of being low (well, my heart rate has always been high, but my BP always low), I feel feverish all the time now too.  And I actually have a low grade fever all the time.

And try as I might, keeping my mouth shut when talking to my dad, my friends, etc., is difficult.  I know it’s the isolation that prompts me to complain all the time.  I wish I were stronger in that regard.  I wish I could just keep taking the hits, but after years and years of this, I’m at my wits end, as they say.  And my dreams have been awful.  People in my life who have died seem to be ‘visiting me’ in my dreams.  Maybe they are preparing me.  That would be nice.

I of course have moments when the old me pops out, but not very often anymore.  I spoke with a friend I haven’t talked to in a few weeks and blurted out all the awful things that have been happening, being defensive about something she said (that didn’t call for me being defensive) and then feeling like crap afterwards.  Happens a lot with her.  And she has a bundle of troubles herself.  It seems like my friends keep their health challenges to themselves;  perhaps they are stronger then me, perhaps they think their problems pale in comparison (NOT true) or perhaps they just have full lives otherwise, and therefore don’t dwell on the ugly side of life.  I wish I could be like that!

I’m just having a very, very hard time seeing anything good right now  I pray.  I meditate. I read til’ my eyes blur, I watch movies.  I applied for more help and will get food stamps soon.  But the extra help I think I might need in the future, I can’t apply for quite yet.  I have ‘too much’  money.  $1,300 that took TEN YEARS for me to squirrel away; now I have to earmark it for my funeral expenses and can’t touch it if I want in home care.  But I don’t think I need that right now.  It could come at any moment and I want to be prepared.

I’m exhausted from all that it took for me to get the paperwork together, drive all around creation getting the receipts I needed from the bank, my utilities, the pharmacy, my providers….it was a nightmare physically.  THAT’S the kind of help I needed but couldn’t get…help getting the help.  And yes, I know that compared to the rest of the world, I’m doing fine.  Compared to the rest of the world, I have what I need; a roof (for now) food, medicine.  I am grateful for that, I really am.  But I’m tired of being tired, tired of being in pain and tired of fighting.  If that’s a sin, I guess I’ll burn in hell.  Luckily, I don’t believe in that concept.

Resistance Turns Pain to Suffering

The daily meditation I’ve been doing, mostly to Stephen Levine CD’s, makes me aware of how hard it is to soften to the pain (as he describes it).  I clench a lot, which makes the pain worse and turns pain to suffering.  Not resisting it helps.  It seems counter intuitive to NOT resist pain, and it is.  But if you try and do the opposite of what your body does (clenches against the pain) the suffering and even the pain, will lessen.  It’s true, I’ve done it, but I have to relearn it every day until it becomes intuitive NOT to resist the pain.

Why would you not resist the pain, you ask?  Well, if you try to soften to the pain by relaxing whatever part of the body that is in pain (my whole lower body, my jaw) the pain really does lessen a bit.  But you have to be aware of it ALL THE TIME if you are in pain all the time, like me.  I’ve often written that pain is just something the body does, but suffering is a choice.  Well, it is and it isn’t.  It’s only a choice if you choose not to try and have mercy on the pain.

Loving-Kindness is not easily practiced, especially when turned inward.  Letting the discomfort just be there, without pushing it away is not an easy practice.  But if you try, you just might be able to live with the pain a little better.  Because if you are like me, the pain is going nowhere. 

I still haven’t decided if my NF and all that comes with it is there to teach me something in this life, of if the gene that mutated just did what it did; I mean, how many of us win the genetic lottery like Angelina Jolie?  That’s why I am so against looking at those people and feeling rotten because we got the ‘short end of the stick’.  In reality, unless you are a close personal friend  of the genetic lottery winners, you haven’t a clue what their lives are really like, what they suffer from, etc.  So don’t go there (even though I brought it up).

Whatever the case, I need to figure out a way to live with the pain, the constipation, the change in my blood pressure, heart rate, the cancer (breast, 2005), the rare stomach disorder I had in 2007 that required surgery, the horrible teeth, locked jaw, all the diseases I’ve survived which are too long to list and whatever hasn’t hit me yet.

So I’m meditating.  I’m trying to love myself as I am, and as I’m not.  Sending mercy and forgiveness into every sensation and softening to it each and every moment of every day.  Being conscious of it is the hardest part of all.  Especially when all of the sudden, even my Miralax stopped working.  Also, my insurance won’t pay for a refill but once a month, and I need it more than that.

Karen Drucker

Class A Doctor

I actually got into the Digestive Diseases Clinic at the University of Washington today, after that horrific experience I had scheduling the appointment.  They had a cancellation.  I met with Dr.Rahul Kuver, who was wonderful!   It feels so good to write a positive experience with a doctor.  Most of my experiences at the U, while not horrible, are not always very satisfying either, and until today, I didn’t understand exactly why.  I mean, all of the staff and most of the doctors are kind and very accommodating when it comes to my issues (needing to lay down, etc.), but it's frustrating not to get answers.  As I always write, doctors heal, and if we can't be healed, they want to move to someone they can heal.  I get that.  Still, a few extra minutes explaining things makes all the difference in the world!!

Dr. Kuver spent a lot of time explaining to me exactly why my bowels are giving me such a hard time, and even connected the dots between that and my sudden increase in blood pressure and pulse rate.  He said it’s all part of the same system.  While it’s depressing that nothing can be done about it, he did say that I could take Miralax everyday with no problem, because there isn’t anything bad in it (which I knew, but it was nice to hear).  He was gentle, patient and detailed in his explanation of my situation.

While I didn’t exactly feel like jumping for joy, at least I got answers from someone who truly seemed to care.  Plus he was really good looking.  Too bad I’m old enough to be his mother (and he was married).  But I never notice those things anymore because I feel so old, ugly and damaged.  That’s why I never settled with anyone.  It use to be young, ugly and damaged.  I need to re-read “Bumps of Beauty” which I wrote 12 years ago.  I’m not one to take my own advice, I guess.

I guess I knew that my bowels have now become neurogenic, just like my bladder.  So now I have yet another issue to monitor daily.  And since it always feels like I have to empty my bowels, leaving home for long periods is out of the question.    One more thing.  One more thing.  One more thing.  And another one bites the dust (system).  I thought emptying my bowels would lower my blood pressure, but nooooooooooo.   And I have high cholesterol too.

People often say they would like to die in their sleep.  Just drift off and never wake up.  To me, that would be scary.  I had this nightmare last night that someone I know was trying to kill me.  I sometimes think that dying in your sleep would be like that; a nightmare you can’t wake up from….and if you’re dead, it would be an eternity of not waking up from the nightmare.  That’s stretching it, I know.  Still, I think I want to see it coming.  Or maybe not.  Sigh.

Channeling Optimism

Ah, suffering the slings and arrows of a loud cat.  Oliver has taken to meowing right in my ear, in his unabated effort for cat treats, which I dole out too generously (though he thinks me stingy).  I’m so glad I didn’t have children.  I’d have ended up institutionalized and the kid would have filed for early emancipation at the age of 12.  G-d does indeed work in mysterious ways.

I just finished that book I was reading about Alice Herz Sommer.  It was amazing.  Now I want to read the one she wrote.  As much as I try to remain optimistic in the face of my growing health challenges (and some say I am very optimistic, all things considered), I think I need to start channeling her into me.  But she’s still alive; and I don’t think you can channel living people.  Of course, this is assuming you can channel anyone in the first place.  Sigh.  Life is so confusing.

Two people having the same experience but completely different interpretations of that experience is something we are all aware.  But how does one remain so indelibly positive when things are rotten all over?  “I’m a born optimist” Alice Herz Sommers declares.  In the book I just read about her life (the title is a post or two down….can’t think of it and I returned the book to the library).  It touches on why she thinks she got through her experience in a concentration camp with optimism. 

And here I am, laying on a comfortable (and new) couch.  I just ate dinner, which I was able to make.  I have access to medical care and the medicine I need.  I have friends, and I have family.  I have very little money, but I am rich in oh so many ways.  Does all that make the pain go away?  No, it does not.  But this knowledge, if I think about it everyday,  keeps me out of the “suffering” category.  Pain and Suffering DO NOT go hand in hand.

You look at the faces of people in improvised lands and many are smiling for the camera.   In the west, in Europe right now (and I’m sure in the US as well) people are committing suicide due to the economic “downturn’ which is really a world wide depression.  When you fall from very high up, it is much more traumatic than it is if you have nothing to start with.  The big difference for me is the cost of the healthy choices I’m making food wise.  Though I’ve always eaten healthy food, I’ve taken it up a notch or two.  I’ve never roasted beets before; I’ve always liked fresh beets, but had no clue how to make them.  So I went online.  You can find anything online.

I still eat chocolate, although now nothing lower than 70% cocoa, and no more than 12 grams of sugar.  That’s up from my normal amount.  I will not buy anything with more than 9 grams of sugar.  I’m repeating myself, I know.  I’m having a senior moment.

So, we shall see.  I need to stop worrying about everything that is out of my hands.  As soon as I ‘get’ that we are all going to die, I relax a little.  It’s the in between birth and death that’s the challenge, right?  Then hopefully, my should will ADVANCE and I will not need to return.  As Freda Kalo wrote “I hope my exit is joyful and I wish never to return”

Preparing

There has been a lot written about how to ‘survive’ a catastrophe, be it man made or a Mother Nature event.  Water, food, etc.  And of course, medication.  As tornado season is upon us, I thought I’d add my two cents worth.  I have always kept my meds in a plastic container that I keep close at hand.  My back up meds are in a bag where I can reach it too.   A ‘grab and go’ kind of thing.  Make sure yours are somewhere accessible, though by definition of a catastrophe, what is accessible now may not be.  Just do your best to choose.

But truth be told, I would not want to survive something catastrophic.  I would not want to survive something that would render me without a place to be comfortable.  So in case of such an event, having a bottle of water and all my pills is all I need.  But that’s because I’m ill.  If I were well, I’m not sure how I would feel.

Okay, here’s an update from my “Medical Sadism” post.  I finally got the referral to be seen in the Digestive Diseases clinic at the U.  I called to make the appointment, and now they tell me they aren’t even scheduling any further out right now, and I have to call back next week.  If it weren’t so pathetic, it would be funny.  I feel like Dorothy, who had to go back for the broom from the wicked witch of the west.  Only I need a broom from the one in the north, the south, the east and every other corner of the globe.  My appointment won’t be until mid June when they finally make it (no exaggeration; they are booked until the end of May, which is why they aren’t taking more appointments now).  By then, whatever is causing my digestion to not respond to much of anything (even when I do manage to eliminate, it’s not much) will have progressed even more.

I realize it is probably the opiates, but the abrupt change has me questioning it.  I’m eating everything that would cause a normal person to stay close to a bathroom for days on end.  Beets, papaya, leafy dark greens, plums, kiwi, strawberries. And fresh fish, quinoa (my only grain besides the occasional slice of toast….seedy bread).  My food bill is through the roof and I’m only feeding myself.  Oliver gets his own brand of health food.  He seems to do fine in that department.  Maybe I should try a litter box.

A while ago, I bragged about how my method worked wonders…and it did, for four years.  I am thankful for that, believe me.  If you are having problems and haven’t tried this method, I suggest you do.  It’s 500 mg of magnesium in the morning with ½ cup of yogurt and fresh seasonal fruit, sprinkled with flax seed meal.  The meal, not the seeds, though that might work too.  They just get stuck in your teeth.  Then repeat the magnesium in the evening.  My constipation cleared up in THREE DAYS.  After years of dealing with it, I was cured!!!!  But alas, it stopped working.  I thought it was the brand of the magnesium, but I don’t think so now.

Suggestions, anyone?

A Garden of Eden in Hell

I posted the video on Alice Herz Sommers because it is the most awe inspiring thing I’ve heard in a very long time.  She survived the Holocaust, wrote a book entitled “A Garden of Eden in Hell” at the age of 104 and is now 108.  She practices the piano three hours every day and lives independently.

I know I live in a lot of pain, as do many of you.  And I always lecture about not comparing your world to someone else’s.  But this woman is an exception (for me) to that rule.  There are, after all, many kinds of pain.  But her courage soars above most people walking the planet, claiming to be, or being called, courageous.  And as it reads in the beginning of this video “The Secret of Happiness is Freedom, The Secret of Freedom is Courage”  Thucydides  471 BC – 400 BC you make your own freedom, happiness.   I’ve watched this three times so far and suggest you view it at least once.  It’s truly amazing.

Mrs. Sommers should be a beacon to those of us (including me) struggling with our broken and beleaguered bodies, our disinterested doctors, our sometimes distant friends and family members (who don’t know what to do because there IS nothing to do so supporting us is impossible, especially when our moods are sour and our only emotion is anger) and our shattered hearts and souls. 

The thing is, there are holocausts happening every day in this world.  The Jewish Holocaust is the most talked about because it’s important for us to remember it, as we remember the Exodus (Passover was just last week).  But the atrocities happening in countries in Africa and all over the globe have not stopped or even slowed.  And the US, who finally rescued the prisoners of the holocaust that Sommers survived, did so very late in the war.  If they had acted sooner, who knows how many more lives would have been saved.  And I’m not even going to try and write about or try to make sense of the war we are currently involved in.  But I will write that the way we treat our troops upon their return is beyond disgraceful.

I would like to take a leaf from her book and keep it by my side when I’m feeling the pity potty calling.  Or at least listen again and again, to her tale of courage under fire.

Blessings.

Kinderscenen by Shumann

Lime in the Coconut

Must stop reading Huffington Post.  Again.  Makes me crazy.  Boredom or being driven nuts, that’s the question.  With all the cutbacks in social services, I’m doubting more and more that I’ll get help.  As I wrote, when I did it online it told me I didn’t qualify for anything except maybe some food stamps.  I wouldn’t turn it down, but it’s not what I need.

You know what?  I truly don’t care anymore.  My laxative didn’t work last night.  Oh-oh.  Not a good sign.  Can’t afford the shot, but if I went to the ER, they’d give it to me.   Not quite ready for that yet though, it’s only been a day.  I’m just feeling so lousy….it feels like I have a bowel movement all the time but nothing is there…it just feels like a big bowling ball wanting to come out.  I need a new trick.

I ate some papaya and that was nice and soothing.  But I went to three stores to find another, and no one had it except one store…but they only had one left and it was four dollars.  FOUR DOLLARS for ONE papaya.  Aye yai yai!  Time for papaya enzymes.  Not as good, but better than nothing, honey.

Or, I could try this. Doctor!  Is there nothing I can take I said Doctor! To relieve this belly ache....listen, enjoy!

Third Child?

My father once told me that he and my mother were not initially in agreement on having a third child.  My question to him is this::  Did my mom want a third one because I was so damaged, had so many problems before the age of six that she thought I would die? Or was it that dad didn’t want to have a third child for the very same reasons?  I am after all, eight years older than my sister.  There was plenty of time to assess the situation and decide.  Clearly, they loved her as much as myself and my brother...and the decision probably had nothing to do with me.  Still, one wonders.

And assessing it wasn’t just about my NF (then called Von Recklinghausen disorder).  It was about the scarlet fever that almost killed me, the mumps, measles and every other childhood disease, in me, 10 times worse.  I wouldn’t be surprise if they had a plot picked out for me.  On the other hand, my mother always said of my scarlet fever  “The doctor’s said it was mother’s love that saved you”  She’d tell me this whenever we fought.  And I always said the same thing:  “Thanks a heap, mom…shoulda let me die”

Tonight I’m missing yet another family gathering, this one to celebrate Passover, and it popped in my head so I’m writing about it.  I’m thinking about my disorder, my anger at it and what it has done to me and the anger at myself for not being able to let go of all the things I’m angry about.  Hell, I’m even angry that I’m angry.  And the pain, the numbness and all other systems get worse when I’m angry.  So might as well address it,  Smart, eh?

I have always written.  From as far back as I can remember.  I’ve always read, too.  Under the covers with Poe and a flashlight at age 10.  I remember a line in some poem I wrote at about that age.  It was raining, and I couldn’t go out with my friends.  I wrote something about “G-d’s tears on the Pane” (window pane).  I didn’t know what double entendre was, but I wrote one. Kind of..  And since then, there has been nothing but pain.  And not the glass in the window frame kind.

So how do I get to the anger?  Can’t ask my dad the question I posed: he will either lie or say he doesn’t remember because he won’t want to hurt me.   I never knew there was a question until tonight, when I started thinking about my week, how hard it was physically.

I went to DSHS and had them help me through the application process, then drove around for an hour, collecting what they needed; copies of things I didn’t have, like bank statements, utility invoices, pharmaceutical costs, etc.  I have little hope of getting any more help, as they have tightened up their rules and I have “too much” money (it shows a balance of $2,000 but that’s before I start paying this months bills….which they don’t ask about).

I hope to G-d I die before I need Medicaid.  I don’t want to go on welfare, which is what it is.  And I certainly don’t want to end up in a state run facility….with Medicaid, you go where there is an opening…it could be close by so my friends can visit, or it could be on the other side of the mountains.  Not gonna happen.  I won’t let it.

Medical Sadism

This is one of my less inspiring (the content, I mean) posts, but I need to vent

Another (bad) day.  Seems like they are more the norm now.  My body is almost completely dead from the waist down.  My legs and feet are leaden, when I can feel them at all.  So it’s not wonder my bowels have stopped working….entirely.

I cannot eliminate without a steady infusion of prescription Miralax (probably the same as OTC but my policy pays for it) and even that doesn’t work some times.  There is this new shot now (I wrote about it before I think) but seven doses is over 100 bucks….I need to check and see if my doctor can request from my Medicare provider that I need it.

And I’m beyond frustrated…tried to get into the clinic at the “U” for gastro problems, and my referral “expired” on 15^th of this month…I said, well, it’s only the 3^rd and I’m calling…she said no, you have to be seen before then, and we have no openings until May.  So I have to call the doc who referred me to ask him to refer me again….he can extend the referral, but I have to keep calling to find out which one he did…extend or re refer.  It’s sadistic.  It really is.  The hoops they make you jump through when they know you are a patient there with a medical file the size of every phone book in the US.  There is no other word for it.  And of course, I couldn’t reach the referring doc…just got a recording for heaven’s sake.  I’m losing my mind.  And my body.

I am so near tears it’s ridiculous.  I keep praying for someone to come and help me; don’t want to ask my family, they have their own problems.  I just want someone to move in here and take care of me, period.  I can’t do it anymore.  I mean, I CAN, I just am exhausted.   I wear a brace at night and my legs seem to be better in the morning, but when I lay on the couch, flat….they go numb.  So I’m trying to lay around on my side and wear the brace during the day too.

So now, with the “never will come back” bowel issue (I’m not being negative: I have always eaten very, very healthily with the exception of sugar, which I now have given up…I won’t buy anything with more than 10 gms of sugar in it…and I gave up juice, the hardest thing for me to do).  I have yet another part of my body that has disappeared.  I drink literally, 3 to 4 64 oz. of water (in a bottle  I refill) every day.  That’s 192 oz. of water…and all that fruit….the normal person won’t be able to come out of the bathroom all day.  Me?  Nada.  Well, pee.

I also heard about this diet (not to lose weight) called “Specific Carbohydrates Diet” that supposedly helps with everything from digestive issues to certain kinds of pain.    I looked it up…doesn’t look that much different from what I already do, except no sugar at all…right now, I allow myself 70% dark chocolate, and cookies that are less than 10 gms of sugar.  But hey, it’s better then what I was doing which I am to embarrassed to write about.  Let’s just say it probably is as much to blame for my problems as the opiates.  I’m also concerned about my BP and heart rate.  Sugar is really bad for those things too, but I have been lucky (thus far) and always had low BP…well, it’s not anymore….I know pain causes the BP to go up, but I’ve always been in pain and it’s always been low.  Go figure.  Okay, enough

Stick a fork in me, I’m done.

Little Sherri (inner) Conversation

I’m trying to write this before the vision fades away.  Last week was one of my worst. But I had good friends over Saturday, and that helped.   Then another friend came by Saturday night and helped me with some things I can’t do right now.   Shopping, mostly.  I did it in pain because I had no choice, but at least I had a ride.  When my other friends were over for brunch they did EVERYTHING…I bought dessert but they did everything from start to finish.  It was great..  But I started crying softly at one point when they weren’t in the same room with me.

I was crying because it occurred to me how much I need this, and how little I can do about it.  And the money!!  I just don’t feel like I’m worth it.  Not one tiny bit.  I expressed that to my friend last night…said I think they would all be better off without me.  After she left, I took a hot shower.  Standing there, ready to get out, I repeated it out loud; that I am not worth it, I need to leave.  Soon.  Then something odd happened.  Little Sherri popped up in my consciousness.   Little Sherri is my inner child, of course.  She, and all my helpers from the other side are available to me whenever I call them.  And sometimes, like in this case, they just pop into consciousness.  Seems like lots of things happen to me in the shower!

I’m trying hard to remember the internal conversation:  S is me, LS is little me.

S         I think they would be better off without me

LS       You don’t know that

S         Isn’t it obvious?  I’m costing everyone a fortune and I feel lousy.  I can’t take it anymore.  I’m getting worse all the time

LS       You don’t know that

S         I’m sorry, I think I know my own body

LS       Your own body is my own body.  I like it

S         Yes, but it wasn’t as damaged as my body is.

LS       You don’t know the future.  You don’t know what can happen.  What has happened to your faith?  Your hope?

S         Reality.  That’s what’s happened to it.  The reality is, it’s getting worse.

LS       I don’t want to die.  I’m not ready.  I have things to do.  If you hurt or kill yourself, you are killing off the innocence that is mine.

S         You’re innocence died at puberty, when we were diagnosed.  Don’t you remember?  Don’t you recall being sick all the time, why you had few friends, why school was impossible  and later…why boys never glanced your way?  You’re telling me you would miss that?

LS       I’d miss the possibility.  And so will you.  You will be stuck through eternity wondering ‘what if?”  which is worse….20,  or 30 more years of pain, or an eternity of uncertainty?

There was more, but I can’t remember it.  I got out of the shower and dried and dressed

as fast as I could so I could write this, but it still faded away.  However, I got the gist of

it.