Topsy Turvey

Okay, so yesterday was a Twilight Zone day for me.  I went to the dentist, as planned, and when I got there I asked if they were running on time.  The cheeky reply was “Yes we are.  But your appointment is for tomorrow” Cute.  Well, I was in such agony yesterday (which should have been my “good” day) I wasn’t about to come in today….and besides, I had an acupuncture appointment for today.

So I cancelled.  And gosh, re-scheduling only took five minutes to find a timeslot that would work….I have to do it after “patch day” and they need two hours.  Then started thinking I had flip flopped the appointments.  Topsy Turvy day.  But thankfully, that wasn’t the case because she had been on vacation and I am a physical minefield.  Well, I am anyway, but without her help, I am a lot worse.

Staying in the moment has been very, very difficult   I realized (again and again) that it hurts more, much more, when my mind is elsewhere in the dark.  Elsewhere as in distraction is a good thing, but elsewhere as in dark and scary is not.  Pulling myself back to the present and remembering that there is only the moment is a challenge.  Because the moment isn’t always pleasant.  But that’s not the point.  The point is to be present, always, and to know that there is no such thing as the future.  There is now,  and now, and only now.

So I just got back and I almost didn’t go because it’s so bad today.  But my helper pushed me and I’m glad she did.  She works with essential oils too, so between that and the acupuncture and the gentle chiropractic, I feel better.  Pam also insisted on going to the store without me (before my appointment) and so I cut the list down because I didn’t have a lot of cash and she got what I needed.  The rest can wait, no big deal.

So I had some roasted chicken, some leftover potatoes and fruit.  And some cookies.  And I sure hope things start moving again.   She sells some “can’t find them in the stores” supplements, one of which is great for my gastro issues.  It’s a food supplement from a place only doctors can order from.  It helps.  Expensive, but worth it.

Tap, tap, tap

My posts read like a roller-coaster of emotions.  Guess that makes sense, given how I feel most of the time. One day of feeling like the pain was a 3 instead of an 8 or 9, and I’m giddy.  And as much as I’m thankful for it and believe me, I am, the fear of the pain returning is always tickling me in the back of my head.  More like tapping.  Like a crow does.  Tap, tap, tap….hello there, Sherri, don’t forget about me!  I’m just taking a little rest.  I’ll be back!  I’ll give it this: it keeps its promises.  Back indeed.

I have a two-hour dental appointment tomorrow which I am dreading because my gastro problems are huge right now….and of course, Pam is unavailable tomorrow.  Has a class.  They are sending someone else which I wouldn’t have asked for if not for the appointment.  It’s funny, because the exact same thing happened last month.  Pam had a class, I had a dentist appointment.  New crown.  I need two, but I told them to do the worst one first.  I have to make the appointments the day after my new patch is on, and finding two hours isn’t easy, so it takes a while to get the appointment.  Cannot cancel.  Don’t know why I’m even bothering.  I guess I don’t want my teeth to fall out.

A good friend of mine has a loving cat that she has to put down tomorrow.  Poor thing…got sick very suddenly and is very sick.  I said a bunch of prayers for him last night and pictured him getting better slowly.  But this morning he wasn’t any better.  This is when my NF woes really kick in.  I want to hop in my car and go see my friend.  I want to be with her when she puts George (her cat) down.  I’ve been with her for that with other cats, and she with me.  She does have someone going with her, but it saddens and angers me that it’s not an option for me.  Not. An. Option.  Like so many things in my life.  Yadda yadda. Sorry, pity potty moment.

My sister and I cancelled our visit today….neither one of us was feeling well and I said let’s just re-schedule this.  No date yet, but hopefully, later in the week   And I spoke with my dad just now.  He’s hurting a lot (spinal stenosis) and is 1600 miles away and I’m angry I can’t hop on a plane and go see him.  

G-d grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

If it weren’t for the fact that that is the credo for people in recovery, I’d say “Let’s drink to that!”

Ah, The Great Mysteries!

Ah, the great mysteries of the human body!   As I wrote in another piece, what a miracle it is to be born whole and how unlikely is it, really, for that to happen given all that could go wrong in the cell dividing process of becoming human.  In the case of NF, the culprit, thanks to science is identified in genes 17 and 22 on that ladder of life, DNA.  That twisting, turning Escher-like double helix, the tell-tale spell binding truth of who we are, what we are likely to become.    Being born whole seems almost impossible, doesn’t it?  And truth be told, being born completely whole doesn’t happen all that often.  As Rosanna Dana (Gilda Radner) once said (in the original SNL) “It’s always something” That I heard growing up nearly every day of my life.

So yesterday was Hell, today Heaven (in comparison) and I’m thanking G-d for every second of it.  The 1 ½ hours I was out today.  Getting. Things. Done.  With my helper of course, but getting groceries (two stores) and looking for a new throw (two stores) for my couch.  The other one sheds worse than Oliver.  Every time Pam vaccumes, it picks up CLOUDS of red dust.  I find it in my dryer, too.  It will be a long time before it is no longer handing around (kind of like my methadone withdrawal) but it won’t be causing any more havoc.   And the new one is thicker and warmer, which my friends will be very appreciative of because even though I have the heat on, it is still kind of chilly in here.  And the heater is noisy so it’s hard to hear movies and each other’s voices.  And it was on sale.  Win-win for everyone!

So, my mind is all a-flutter, trying to figure out why yesterday was such a nightmare while today, though in pain (it’s always there…it’s the degree that vacillates), is doable.  See?  I wrote yesterday that trying to figure out why it is the way it is does nothing but drive us bad.  And now I am trying to figure out why it is better (first day on new patch does make a difference) today.  Just stick a fork in me, I seem to be done.

My sister is coming over on Sunday….that will be nice. She hurt her back (her job requires standing on her feet all day) and is seeing a really good chiropractor (no back crunching which SOUNDS good but is really doing more harm or nothing at all) and I’ve been worried about her.  She is going to bring over Whole Food treats, which is always a treat for me!  So that will be fun.  Then a friend is coming over that evening.  I will see how I am doing after my sister leaves.  It’s patch day on Sunday so I’ll jump in the shower while she’s still here and change the patch later if it’s too early.

 (I tried to find a clip of Gilda Radner doing "It's Always Something" but none are posted on You Tube except spoofs on it....I wanted the original.)

Maybe It's....

When the pain is through the roof like it is today (demonic torture) and nothing is helping; not the new patch, not quieting myself, not my breakthrough meds, not food, I start tormenting myself trying to find the answers.

It’s then (now) that I often want to “figure it out” which is pointless.  When friends and family try and ask those questions or make suggestions, I feel like shouting, “There is no rhyme or reason, no answers and nothing that helps.  Don’t try and fix me.  Just listen sometimes!”  It’s amazing that friends and family are still around.

But when I am alone and my symptoms hit the ceiling, I do exactly that.  Question.  Try and fix.  Drive myself crazier than I already am.  Maybe it’s because I’m a bit constipated (again), maybe it’s the rain, or the heat or the cold, maybe the moon is full, maybe all the medication just isn’t working anymore (again), maybe it’s time for something different or maybe (my favorite) it’s time to move on.  I can’t help having these thoughts; they just come rushing out of me, dancing around me, jumping up and down on my already hurting body.  And then come the questions:  why me?  What have I done?  How can I fix it? What am I here to learn? For which there are no answers.  None I can decipher, anyway.

And today is definitely one of those days.  I am trying to distract myself by reading but my eyes are tired now.  I’ve watched a few episodes of “Frasier” which always makes me laugh.  I’d try cuddling with Oliver but cats aren’t big on cuddling, except with each other.  And Oliver is a bit histrionic; racing back and forth and crying for treats, trying to get me to think it’s his blood pressure.  Well, he’s learned from the best when it comes to high drama.

So…not much one can do except wait it 

The Light in the Darkness

I keep writing something to post and tossing it out.  My helper was out sick again today and I took a shower and changed my patch anyway.  I just said a little prayer first and was very conscious and careful.  I always am, but I put more “umph” into it this time.  And then there was that damn mirror with me in it.  Oh well.

While I was doing my drumming this morning, I asked for help to be more useful, more positive and more accepting of my condition.  It ain’t easy.  My brother and his wife stopped by again last night and my sister has been calling regularly now.  I’m thinking they talked about it together and decided they needed to be more available.  Maybe.  Or maybe they just realized it at the same time.  A “100^th monkey” kind of thing.  That’s not a cut.  The story goes, that if enough monkeys start doing something, like peeling a banana, monkeys all over the world will develop the dexterity to do the same thing.  They needn’t be in the same location.  So that’s where it comes from.  At any rate, it does help when they call and come by.  It helps a lot.  I didn’t know how much so until they started doing it.  I mean, they always checked in….just not very often.  But “often” is a different experience for different people.  Being alone day in and day out, with the exception of the help I get and the people who drop by, makes a day feel like a week.  The number of times we talked when I wasn’t in this kind of shape was much more acceptable to me.  So, thank you G-d, for my family.

And thank you for the roof over my head; for the meal that is cooking which I shall consume, for my friends, my family and yes, thank you for the pain and the challenges.  They are mine, and mine alone.  It’s a gift when I’m thinking straight, a torment when the pain is so bad I can’t think straight.  It is a blessing and a curse.  You can’t see the light unless there is darkness all around you.  And sometimes, you can’t see the light because of the darkness all around you.

We need to see with better eyes, hear with better ears and love with better hearts.  True joy comes from great suffering, and unless you are suffering, you don’t see it.  But joy, like light, must be surrounded by suffering in order to be appreciated.    I’m waiting for the cloud to burst and run out of rain. 

Wish me luck.  I live in Seattle.

Nightmare on Wheels

I’ve started a new system.  I want Pam here when I shower, so instead of changing the patch when I shower (which used to be after she left) I’m showering earlier and will change the patch later.  I’m just too wobbly these days and one false move could mean a fall.  So many changes all the time.  And I’m literally exhausted, so that doesn’t help with my balance.  I’m just not sleeping.

My pain nurse said she wants me functional but I don’t see that happening.  I went out twice this week and was in so much pain when I got home nothing helped.  I’m sure the exhaustion is a combination for these drugs and not sleeping. 

It’s amazing to me that someone can have ONE tumor that ends up killing them, but I have hundreds and they won’t let me go.  I know mine aren’t cancerous…but non-cancerous tumors can kill too.  This disorder is a mysterious nightmare on wheels.  And they can turn cancerous.  I just haven’t got the energy to put myself through any more MRI’s.  I’m not even sure if I want to have another mammogram.  And I’ve had breast cancer.  I just don’t care. Period.

Millions, no, billions of dollars are spent on “finding the cure” for this or that disease….but how much is really being spent to do that, and how much is spent on administrative costs?  I realize people have to be paid, but when was the last time you heard of a disease being cured?  I know I won’t see it in my lifetime, but for the sake of the children with this demonic disorder, I hope the end is in sight.

And as bad as it is for me, seeing children suffer from the slings and arrows of NF break me into little pieces.  Yes, I’ve had a lot of losses in my life over the last 14 years or so.  But I had some good years too.  And for that, I am grateful

Each Year

How many heartbeats will pound in our ears, how much laughter, how many tears? 

How many times do our eyes blink each day, compared to the number of thoughts gone astray?

How many times to we whine and complain, and who do we praise without thinking of gain?

How often locked away with our woes, compared to the times with beach sand between toes?

How much dark chocolate and how many greens, how often hiding and how often seen?

How often stopping because of some fear, how often pushing past what’s in that mirror?

How often grateful for all that we have, how often “I want” spreads like some kind of salve?

How many promises kept day by day, how many excuses held them at bay?

How often sick and how often well, is life often heaven or more often hell?

How often eating at life’s apple pie, how often wishing and hoping to die?

How many tumors can fit in my frame causing problems that just are too many to name,

How does one make peace with this kind of life, filled with pain, isolation and merciless strife?

Where does one find the courage to be here in peace and remember it’s never to own but to lease? 

No one said it was easy but when I’m aware, I know choosing the light gets me closer to “there”.

                                                                                        

, 

These Friends of Mine

I have these three friends that I get together with a few times each year to celebrate birthdays and other holidays.  We don’t give big gifts, but we do exchange books so that’s always great fun.  Finding the time has always been a challenge for them because they are so busy.  Me, not so much, and we always do it at my place so I don’t have to go anywhere.   They each bring something, I provide something (all these decisions are made a few days before) and they do virtually everything so I can stay rested.  They are all very educated, successful women with busy lives.  The fact that I am part of that group always amazes me.  Actually, I have a couple of other friends outside that small group I feel the same way about.  Why me?  My life is about as interesting as re-runs of a television show that was boring the first time around.   I’m not saying this like a “poor me” thing; I really don’t get it.  I mean, I try to laugh, tell jokes, participate, be interested in everything they say and do.  And I think I succeed for the most part.

So we got together Saturday morning for brunch, a chat and a book exchange. One of them was discussing a health issue that she has and I hadn’t heard about it.  I said “I hope you guys don’t keep things from me because you think it can’t compare to my issues…nothing could be further from the truth, I don’t think that and I don’t want you to”  She answered by saying she hadn’t told anyone, it had nothing to do with me.  But I felt I needed to say it.  That balancing act is difficult.  You want to be honest, but either way, what I said sounded self-centered.  I was assuming they were keeping things from me because of my NF.  But if I felt they shouldn’t be allowed to complain because I’ve got it worse, that wouldn’t be right either.  And I honestly don’t, and never have.  It’s all relative.  Again:  roof, food, medicine, friends, family.   Ah, the challenge of being alive.

So we had a great meal, a great time and they stayed until I showered and changed my patch.  From now on, I won’t shower unless someone is here.  It won’t be the end of the world if I have a day when I change the patch without showering.  I can always shower the next day.  The problem with having friends over is that sometimes, once they leave, I am bored stiff.  I think all that action when my life is so inactive, screws up my brainwaves.  I have a stack of books (thanks to our book exchange and the ones I had sitting here before it) and Netflix, but I don’t feel interested in anything.  Plus, my stomach is a mess.  Too much food.

And that’s all she wrote.

Eight Years and Counting

It is patch day today, and like every other patch day, I remove the old patch, take a shower in water as hot as I can stand it, shampoo my hair, scrub off the glue from the old patch and step out of the shower.  Then I try not to look in the mirror over the sink that faces the shower.  I wrap myself in a towel, dry off and put the new patch on before rubbing lotion all over me.  Trying not to look in the mirror.  Then I put on the things that I sleep in, even though it’s only 2 in the afternoon.  I do this while trying not to look into that damn mirror.  The one that is over the sink, facing the shower.  The one that is, I swear, a reflection of some other me; perhaps the one that died in a concentration camp in its previous incarnation.

Yes, with age, everyone’s body changes. This feels like it’s a bit over the top.  I think back to 2005, just eight years ago, when I had breast cancer and had a mastectomy of my right breast.  Just before the surgery, I went to a healing retreat in NM.  I was able to fly there.  I was able to participate in the event, even though I was in pain.  I had the surgery and came out of it with flying colors.  My NF has advanced much since then.  I don’t even want to think about life eight years from now.  While I am far from the only one facing life changing events (my sister has lost two friends to ovarian cancer, other friends are facing health challenges and I am very worried about my dad’s health and the distance we are from one another).  So I get that I am not the only one with problems.

But I do have pity potty parties on occasion.  Then I get this in my inbox.  Puts things in perspective.  I have a roof over my head, food in my belly (well, no way to get it out again, but you know) access to the medicine I need and people who love me.  I am blessed.   Please click on this and watch it.

Hospice Care

My dear friend Ted, who’s in a nursing home, just called me.  He has been approved for hospice care.  He won’t be leaving the home but caregivers will be coming to him a few times a week.  He is now paralyzed from the waist down and weighs just a little bit more than me.  But he of course, is a grown man and the one time we actually met, several years ago, his weight was about 150.  He’s had lots of surgeries and has rods in his back.  The pain medication he is on does little for him, and a doctor at the nursing home actually took one of them away from him.  He got it back this weekend.

Sometimes, when I speak to him I get so depressed and scared that I have a panic attack.  I was in panic attack mode before he called today and after we spoke it spiked.  I’m better now and trying not to think about the fact that I always seem to be a few months behind him in terms of symptoms.  And some of his “tricks” digestive wise don’t work for me.  Like the Relistor (the shot for opiate dependent patients).  That worked when I was in the hospital but does almost nothing for me at home.  And I know I’m doing it correctly.

So here’s the thing.  I don’t feel like I’m much good for anyone or anything, day in and day out.  But what I CAN do is be there for a friend who needs an ear.  And he does need an ear.  And he has been more than an ear for me over the years too.  He has sent me the most beautiful greeting cards you can imagine.  I have them all still and always will.  I feel blessed to have him in my life and I know that he wants what I want: to be done here.  But none of us knows when that will be so the best we can do while we are here is do the best that we can.  When talking with him I must listen with my heart as well as my ears, as he does with me.  I must admire his strength out loud, as he reminds me of how strong I have been.  I must assure him that there is something better on the other side and that G-d does exist and that He loves him, as he assures me of G-d’s love for me and His patience with my impatience.   

My impatience with this disorder that grows ever faster, my impatience with the checks and balances of chronic pain management, my impatience with the side-effects of that management, my impatience with 12 years of cabin fever, my impatience of what I often interpret as “missing out on life” my hearing loss, being able to be with people and most of all, my impatience of having to be on this planet when all I want is for it to be done and G-d, have mercy, do not send me back here, please, I beg Thee.  But what do I know.  Who in their right mind would want to be living a life of pain? 

Sadly, that may be the point.  Whatever I am here to learn, pain is the catalyst for that lesson.  Everyone has their own catalyst.  Perhaps I should think of it as a muse instead.  Pain as Muse.

I am being diligent with my drumming these days, but today it poked me further into panic mode so I will wait a bit and try again later.  Maybe it will bring me "Closer to Fine"  And bring me to being grateful for all I do have, including the incredible people I have met online through this blog.  Several have become very dear to me and generous with their kindness.

Staring Back

My stomach and intestines sound like they are celebrating the 4^th of July or New Year’s Eve with firework explosions down there.  Or maybe thunderstorms and lightening.  You get the picture.  What to eat, what not to eat…I do more experiments than Dr. Frankenstein, only with food.  Recently, I tried kale and also Swiss chard.  Each sautéed in a little olive oil with fresh garlic.  Yummy.  I think the idea is to shake things up a bit and alter what I eat.  I’m so predictable in my food choices my stomach gets bored.  Sigh.

I talked to my therapist yesterday and got some more advice about the drumming thing.  I don’t know what else to call it; “the drumming thing” doesn’t sound very enlightened, but then again, I’m not...  Next time I do it, which will be today after I put the new patch on; I’m going to ask for help from the great beyond.  Someone, something (like a spirit guide, be it animal or person) to get me through this maze of pain and stomach distress because I’m going mad from going up and down the depths.

But just how deep are the depths?  The abyss?  I walk around it all the time, sometimes staring into it.  But is it really staring back into me?  Is it true, that when you look into an abyss, the abyss also looks into you.  Nietzsche thought so.  Of course, old Friedrich had his share of issues; don’t we all?

I am a great mystery book fan (though my eyes are getting tired so much easier these days, reading, which is my all-time favorite pastime, is difficult) and have read all of Jo Nesbo’s books.  But they just released the very first “Harry Hole” book, called “The Bat”.  It was never released in the states.  It’s a good story, but you can tell he was just beginning to write because it’s not nearly as well-crafted as the others.  Worth the read, but if you start with that one, you might be tempted not to read the other seven, which are fabulous.  So I say, start with “Redbreast”, read the other six, and then for fun, read the first... It really doesn’t make a lot of difference, character wise.

Okay. New patch is on, the heat is on, I’m in pain but my tummy has settled.  Time to dive up or down and meet a guide or two!  Wish me luck!!!

What a Difference a Day Makes

Well, as I wrote yesterday, the withdrawal episodes only last about 24 hours and I am better today in terms of those symptoms.  Plus,  yesterday was patch day so today is one of the good ones.  Good enough to go out for a few things with Pam and pick up two books waiting for me patiently at the library.  And I got two more with a gift card the other day, so I’m set book wise.  I panic if there isn’t anything to read.

Pam does such an incredible job and so fast we don’t always use the hours allotted to me.  She needs to slow down!  I have an appointment next week with my healer which I’m looking forward to because she took time off for the holidays so this is my first time in a while.  The pain is still pretty bad most days and I’m less functional than I was in the early days when the demonic methadone was my drug of choice for the pain.  The Fentanyl patch works, but I have to take my breakthrough drug too and I hate it.  So marijuana, it still is!

Speaking of drugs, two people told me I should watch “Breaking Bad” a show I never would have seen myself watching, from the few ads I’ve seen.  I don’t get the channel it’s on and I thought it was a reality show about criminals.  Well, it’s about criminals but it is fascinating.  Like Battlestar Gallactica, the characters are very three dimensional and interesting and the story is fascinating.  With all my drug issues, I had a hard time with the first few episodes, but now I just finished season two and I’m hooked.  Unfortunately, after season four I’ll have to wait another six months for the next season to come out on Netflix or DVD.  I hope Netfilx doesn’t pull it before I have a chance to finish it.  That’s the problem with streaming; you never know when they will pull it and I don’t want to sit and watch it all day.

It does bring up all my anger and issues over people who use that junk “recreationally” I think part of the problem is the lexicon we use.  The word we should use to describe people who use drugs with no medical reason should be “Idiotically”.  Just a thought.   Anyway, I’m better today.

It's Baaaaaaack

A few days ago I had some minor withdrawal type symptoms but it was late in the evening and minor.  Today it slammed me into the wall again.  I was lying here watching something on Netflix and suddenly woke up and it was over and I had barely started it.   My legs are twitching like mad, I’ve been freezing all day (yes, it’s cold outside but the heat is on and I’m bundled up) and I feel like I did back when I first was done taking the methadone.  I keep heaing my pain doc’s nurse tell me that opiates is the only thing that will help with this so I took one of my breakthrough meds, which I try to avoid taking.  And a Tylenol, which sometimes helps.

Of course, the other day she yelled at me for not taking my breakthrough med because the idea is to make me functional.  I try to avoid taking it all the time because of the intestinal problems.  I went to the store yesterday.  Two stores.  That’s about as functional as I’m going to get.  And being out and about triggers it or something.  It’s awful at the moment.  A friend just called and offered to stop by but I told her to call back when she’s done doing her shopping.  I don’t think I’m up for company.  I HATE THIS.   Three months and two weeks and it’s not over.   I keep hearing that it could take up to a year, considering how long I was on it, but then I have a few weeks with no symptoms and I’m lulled into thinking “I’m done” but I’m not.

I know it has been a necessary evil and I know it made me functional for a long time, but this is withdrawal is hellacious…and I’m on other opiates because the pain made life unlivable.  When I let myself think about all my losses and how unlivable my life is; how little I contribute vs. how much I need, it makes me feel selfish for continuing to occupy a space on this planet.  I don’t know how much longer I can hold on.  I know I say and write that all the time; maybe it’s just a way for me to release the feelings (for now) but eventually, I’ll have to make that choice if it’s not made for me.

Because this is not living.  Not by a longshot.