Precious Few

I can’t believe I signed up for this, if that’s what happened before.  Before I was born, that is.  What is it I am supposed to learn from this life of pain?  Pain, digestion, etc.  Non-stop.  Never stops.  Never gives me a chance to breathe, but for a few rare, precious minutes each day, and not all strung together.  I ask G-d all the time, but of course, get no answers except sometimes a soft voice in my left ear that belongs to someone, maybe even me.

People say to just give it over to G-d when it gets too bad.  In general, I mean.  You hear that all the time.   But most people don’t have it non-stop for decades.  I have a few lucid moments when I think about “turning it over” to Him but apparently, He doesn’t want it any more than I do.  Can’t say I blame Him.  So if G-d has no body but He feels pain, does that mean I’ll continue to be in pain without my body?  I can’t even think about that.  The nightmare would never stop. Eternal pain, for all time.  Ah, Geeze.

I can’t do this anymore.  Not alone.  My sister-in-law Francine and my niece Ellie were just here for a visit.  While they were here my pain doctor nurse called and it just made me more upset.  She wants me to have a GI work up and I think she and my pain doctor must have been talking about my life expectancy because she made a couple comments about finding a way to make the rest of my life comfortable.  I may have read into it; I do that.  On the other hand, it’s not exactly a secret that I won’t make it a whole lot longer.  If only.  I pray for that every stinking day of my life.  I felt bad because I broke down in front of them, but I couldn’t help it.  I called my social worker and asked her to call me back, telling her I need more help than I am getting.   I am going to be dropping my methadone by another ½ tab starting today…..she said not to go any faster than three days at a time.  Not sure I can do it that fast; they’ll have to increase the fentanyl at some point, but she can’t send me a script for it until I get to that point…which would possibly mean another ER visit and hospital stay.

I don’t want to play anymore, dear Lord.  I want to take my bats and balls and go HOME.  But if this is punishment and I’ll still be in pain without my body….how do you kill your soul???

I just want something to work right.  I try to eat; I buy high calorie foods but I’m sick to my stomach from not being able to eliminate.  And I’m eating very little.  It’s a vicious, ugly circle and I’m dizzy with grief, laden with pain and drowning in misery.  Can’t you see that?  I know others suffer too….some way more than me….but this has been going on decades.  Decades.

Counter Intuitive Actions

I’m trying to practice being grateful for the small amounts of time I feel well enough, that is, not in agony from the pain of the tumors on my spine or the bowel discomfort, to go out for an hour and get groceries with the woman who helps me.  I’ve never been very organized and always just ran out when I needed something.  But that’s not an option anymore.  I’m afraid to drive any further than to get my mail these days, the pain is so bad.  And since I never know when it will ratchet up, when my feet will disappear on me, or when I’ll need a bathroom immediately if not sooner, driving anywhere seems crazy.  I can’t believe how fast this turned on me, never to turn back again, as it used to do.

 I wake up in a panic and until my anti-anxiety meds kick in, it’s hard to meditate or do anything else.    And trying to gain weight is a horrific challenge.  Ensure and all the other kinds of weight gaining products make me sick to my stomach, even the “lactose free” kind.  I AM lactose intolerant, but there is something in the lactose free ones that make me sick.  Every one of them has that effect on me.  While in the hospital, they gave me “Ensure Enlive” which is clear and comes in a couple flavors.  Not as high in calories, but I can drink a lot of those without getting sick.   So today, I went online (having called six stores unable to find the stuff) and found it.  I went to order it and guess what?  DISCONTINUTED!!!  Of course….what’s life, without seventeen challenges every sixteen minutes?  Kidding.  The guy was very helpful, and said that “Boost” has replaced it and is actually higher in calories.   So I was going to order about three cases and then decided I should probably make sure I like it and he said he would not charge me shipping for the first case.  Yea!!!!  Nice guy.

I don’t think I timed getting help any better than I could have.  I would NOT be able to apply for it now because I would not be able to get myself where I need to go to get the application done correctly.  I could barely do it when I did, a few months ago.  That is how fast it went for me; from barely being able to do it at the end of May, to NOT being able to do it now, the end of August.  Very scary.  I was heartbroken when I lost my first helper, Amanda, but I really could not have done better with Pam.  She stepped up to the plate big time last Monday (a week ago??) when I called the ambulance, and I am forever in her debt.  I look forward to seeing her, she works like crazy, running around getting me what I need, cleaning, etc.  And she has suggestions for me too.  She knows of a great butcher nearby, and I normally don’t eat much red meat, but I’m trying to change my diet and add more protein and against my doctors (several) wishes, LESS bulk.   I don’t have the muscle to push it out….so all that bulk and all those laxatives just sits there making noise, going nowhere.  Very frustrating, and I know I am not alone.

My friend Ted called from the nursing home this weekend…he sensed something was wrong….he has always been very intuitive.  He told me he eats very little fiber, and my friend Becky, whose daughter Ashley has NF, has the same issues as well.  I’d like to get all of us in a room with all the doctors tied up with their mouths taped shut so they could just listen and hopefully UNDERSTAND what we tell them.  It feels so hopeless.   Too much fiber is not a good thing for someone like me.

I don’t want to play anymore.  I want to take my bats and balls and go HOME.  Is anyone there?  Anyone at all?  Hello?

First Day Home (Yesterday)

Well, my first full day home after the hospital is behind me (yesterday).   I’m still about as constipated as you can get because I started eating again (lost 12 pounds since February and I’m thin to begin with….102 now) now that the pain levels have come down to a 5 or a 6 instead of a 12 on the 1-10 scale.

The doc who followed me there (an oncology doc, not my pain doc) gave me a “bowel regiment” but they just don’t get that I’m not new to this…it’s been chronic for 12 years.  I have so much fiber in me I feel like I’ll explode, but no results in the BM department.  Sorry to be so graphic.  Kind of fun, eh?  I figure the people reading this are familiar with these challenges so I don’t care what I write.

The good news is, yesterday I actually had two hours of ALMOST pain free. It was amazing.  Didn’t last, but I was crying and thanking G-d the whole time.  I’ve been meditating in the morning while my anti-anxiety meds kick in.  They doubled it, for good reason.  Maybe if this gets under control I can go back to the lower dose, but for now, I need it.   The pain ratchet up again, but not as severe as it was the day I took the ambulance to the ER.  I want to avoid that like the plague.  Horrible.  But necessary.   Trying not to think what that bill will be!!!  Ambulance, ER, three days in the hospital….and they charge you per tissue you use to wipe your nose, as you know.

The person who is my caregiver was a doll.  She was here when it all unfolded and she ran and had a key made, then came in and took care of Oliver while I was in the Big House (okay, I know that’s prison, and it felt like it).  I was very, very grateful because my neighbor didn’t return any of my calls for help.  And they were home, I saw them.    She has physical limitations too, so maybe that was why but I would have liked to speak to her.  Oh well.  Oliver is not real happy with me these days.  Really, really mad at me when I got home.

I’m in a fair amount of pain now….part of it is the constipation and I’m only giving it a few more hours before I pull out the big guns.  It’s been since Wednesday…so its day three.   They told me since I had the “clean out” I could start fresh.  But I’ve had clean outs before and it never makes a bit of difference.  Neurogenic bowels don’t suddenly become functional.  Man, you gotta teach them everything!!!  Kidding.

In other news, I did finish a great book while I was there.  It’s called “Peace like a River” by Leif Enger.  Incredible book.  He’s got another one that I read years ago, but this is his first and you can’t put it down.  Takes place in the Midwest in the 40’s and it’s about faith, family and intrigue.  Really, really, worth the time to read.

Hope your day is fabulous.

Blessings

Emergency Hospital Stay

I just got back from a four day stay at the hospital.  I went in by ambulance on Monday and they admitted me and I stayed, trying to get my pain and my bowels under control.  It was hell.

I was in the ER for 12 hours before I got a room.  They did however, give me pain meds stronger than what I usually take which haven’t worked for six months.  But the pain doc, who I didn’t know (my regular one didn’t come in to my room until Wednesday…but he’s a consultant there, which was why he couldn’t come in earlier.)   The other pain doc took me off my methadone too damn fast and the next day I was in full blown withdrawal.  I was on the ledge like never before, crying uncontrollably and calling everyone I know to try and find a home for Oliver, who has been my buddy (cat) for 15 years.  I was totally zoned.  They called in a clergy to speak with me (non denominational) and kept asking if I was planning on hurting myself. They were the ones who put me on that ledge!!!

So they got me back on methadone on much lower doses than I was used to, but I have the fentanyl patch as well.  They will slowly increase that while dropping the methadone, and I’ll still have my breakthrough med, Diladid.  But it was another three hours from the time they ordered the methadone until they gave it to me, and it was two doses before I started to come down.  It was about as ugly as you can imagine.

The constipation was horrific, and the day before I left I begged my pain doc for the shot (there’s a shot for people with constipation due to narcotics) and they finally did.   It worked in FIVE EFFING MINUTES.  A complete cleanout.  And it kept working for a few hours.  No details necessary, but the nurses could not have been happy about me.  I’m sure they had fun making fun of me and my mood swings.  Thanking them profusely one minute and screaming the next.

Hospitals are very scary places.  If I didn’t know my own body as well as I do, I don’t know what would have happened.  They screwed up the times for my meds every day.  And getting the nurses to listen is difficult.  They are very nice, but it was an Oncology ward and they had never seen anyone with NF and I’m sure were wondering why I was in the kind of torture I was in, even when I explained it.   You need a doctors order for a Qtip….it takes HOURS from the time they SAY they’ll call the doctor; get the order, order the med, get it up from pharmacy, give it to me.  They come in the room tell me they’ll be “right back” and it’s literally an hour or two before you see the whites of their eyes again.  But they are very nice and cheerful at least

They could not wait to get rid of me.  I had an IV for the diladid and the last day I took it orally because that’s what I’ll be doing at home.  That morning, the pain “team” came in and said I could leave if I felt up to it.  That was at 9:30.  I got out at 5.

A doctor once told me that if the FAA made as many mistakes as medical personnel, a jumbo jet with 600 on board would crash daily.  Fun thought.

And I called my pharmacy to see if they have the fentanyl…they didn’t, but I dropped off the script and will have it today, which is a good thing because today is the day I change it.

 

BUT, I have to stay on top of re-ordering it because you can’t refill it and it will take time to get the order, etc., etc.  Hopefully, they will just mail it to me like they did with the methadone.

That’s my war story.  What’s yours?

All That's Fit to Print

Basic Stuff

The pain is through the roof and I see a surgeon tomorrow about a tumor that is killing me.  They all are, but there is one on my arm that hurts whether I touch it or not.   I’m trying to be positive.  It’s so hard sometimes when I hear about how “brave” and “courageous” people are when faced with these kinds of challenges.  Of course, in many cases, a lot of those challenges go away one way or another.  Either they are healed, or they die.  I’d take either.  And I want to be braver, stronger.  I’ve been meditating a lot.  My dear nephew came over the other day with his computer and loaded a medication DVD on one of my thumb drives.  I’ve been using it a lot.  It’s a change from the other one I’ve been using.

Saw my healer yesterday. She said I CANNOT lose any more weight.  I’ve been trying, I really, really have.  I’ve been eating full meals every day, three times a day, snacking on things high in calories, etc.  The constipation is such a nightmare I hate to eat….But I have to, so there.

Other News

I’ve been working on trying to get Amanda back through the Department of Health and Human Services (DSHS).  She has to jump through a bunch of hoops but I’m hoping we can work it out, because I am very unpleased with my provider.

I’m unpleased for a number of reasons, the first being the firing of Amanda because of a traffic violation at the age of 16.  They told her flat out that was the reason, but methinks it has more to do with something else….what, I don’t know.  On their end, not hers.   But I do know my pain levels actually DROP when she is around me….and if that isn’t important to them, then they aren’t important to me.

 

The other reason, equally upsetting, is they flat-out LIED to me about my “participation” (financial).  They told me (and both my brother and sister heard it) that I was allotted 39 hours per month and my participation was $280.  A lot of money, but they would no longer be taking Medicare out of my disability check so that would help.  Then they raised the amount to $400.  But here’s the lie:  The 39 hours does not cover that amount.  They didn’t bother telling me that.  And the provider laughed when I called and said that it was DSHS who should have told me that.  While that is true, the provider still should have told me.

And Amanda now thinks she is the victim of identity theft, or more likely, some kind of mix up between her and someone else with her name, which is very common.  She thinks that because something came up on her background check only DSHS can’t access it without her permission, so she gave it to them and the paperwork with the “offense” on it will come in 10 days or so.  She was in tears when I spoke to her, saying the worst thing she has ever done in her life was the driving offense at 16 and going through a yellow light four years ago.

Now I have to find out exactly how many hours I get for $400, because it isn’t 39.  That number is just the MAXIMUM number of hours I can get.  Big difference and explaining it would have been nice.  I’m okay with the person they have sent me to replace Amanda, but she is pouring it on thick about how lucky she feels to have me for a client because otherwise she would have no work at all.  And three weeks AFTER she started helping me, her supervisor, the woman who got this thing rolling (and leaving out details such as hours/pay) called to see how it was working out.  

So I’m guessing she heard Amanda has applied to work as an independent and she knows I’ll leave them in a heartbeat when that happens.  She’s probably trying to do something to stop it.  Whatever the case, I’m leaving them next month, with or without Amanda. 

Goodbye, Kathi

Please go to this link if you have the time.http://www.komonews.com/kathi-goertzen   I wanted to share this moving segment on Kathi Goertzen, a longtime anchor with KOMO news in Seattle, WA.  I know most of you reading this aren't familiar with a local anchor in Seattle, but she was truly amazing.

As you will learn, she died from a brain tumor.  One that was diagnosed in 1998.  She had several surgeries, bounced back each time, but died yesterday afternoon.  As I often write, I don't watch the news much; too depressing and it makes my pain levels increase.  But she started with KOMO around the time I moved here from Minneapolis, and KOMO was the only local news I watched.  I don't like the other anchors, but I adored her.  She was believable, enjoyable to watch, hit all the right notes at all the right times and just moved me regardless of what she was reporting on.

There was much said in this interview about her courage and how she never complained about the process of being ill.  I wish I had her courage, but comparing does not good. She got angry at the tumors, but didn't complain.  In private, I'm sure she had her down times.   She speaks much about faith, the power of prayer (she believed in it although I don't think she talks about prayer in this segment...she did request prayers the night before she died.  I think she knew the end was nigh and wanted a send off....she got it....in spades).  I wish I could go to Fisher Plaza in Seattle to leave a card or flowers, but I will do so in my heart.

And I will keep working on not letting this disorder of mine own me.  I have NF.  NF does NOT have me.

Cautionary Tale (Off Topic)

I was looking for a filter for my Shark hand held vacuum.  Couldn't find them in the stores, and after three tries, had to give up due to my pain and inability to go from store to store, even with help.

So I ordered it online from a place that shall remain nameless since they have finally corrected the mistake. .  I placed the order, with the model number of the vacuum and the part number.  There was a $12 shipping fee, which was very high, considering it weighed about an ounce.  And when I got it, the part was wrong.  I had to go to a UPS store, pay ANOTHER $12 to send it back....and then they sent me the same part againi!!!!!!!!

So I gave up, went to an Oreck store and got a new hand held  vacuum.  They credited me for the Shark along with the fliters which was very nice of them (though I'm sure they'll make use of it in the form of selling it back to someone somewhere.

The online store got the part I returned (I tracked it with UPS)  and emailed me that my account had been credited.  It hasn't.  Actually, the email read that it was a "return"....but Google wallet, who it went through, wrote that my account was credited.  I don't have a Google Wallet account, so I have no idea what they are referring to.    And I'm guessing I'll never see the money.  Google Wallet has a "no reply" thing on the email and furthermore, there is no actual human being there, like everything else that is Google.  And there is no listing for the kind of problem I was having....it's all very simplistic and vague..  

 I'm usually very careful when ordering online, but I slipped up.  luckily, it wasn't that much money, but in my situation, $28 is a lot of money.

Update:  I looked today, and almost three weeks since this fiasco began, my account was credited.  Thus I won't name the store.  We hear about stuff this all the time but seldom learn from it.  Don't use sites you are unfamiliar with or see that they have no "stars" in the rating online.  I'm just going through Amazon from now on.  The problem for me, and for many of you, is mobility.  After two stores, I gave up.  this is the first time I've been burned online.  But it was partially my fault.  When I saw the cost of shipping it (and Amanda was with me at the time....she didn't say anything except "that's pretty high") I know she never would have done it.  It's always a toss up between penny pinching and being too much pain to shop around....even online.  I thought I saw they had the right part, but I was wrong.

EKG News

I keep praying there is something better for me somewhere else, anywhere else, but here on Earth.  Nothing can be much worse.  Really.  Don’t think I am not grateful for what I do have; access to medicine (which I am so dependent on, the thought of it not being available drives me crazy with fear when I think about it too much).  Food.  Shelter.  Friends.  Family.  It’s all good.  I keep telling myself to have mercy on my body.

But that pesky problem of being in mind numbing, teeth rattling, chronic, intractable, demonic pain, not to mention the side effects of the drugs, namely, digestive issues are endless, tiresome and frightening.  

While I have been assured nothing is wrong right now, I just learned there has been a change in my EKG.    The QTC intervals are higher than they were last year.  NOT dangerously high, but higher..  Never hear of it.  I thought it was a grocery store.  Oh, wait.  That’s QFC (kidding).  Something about the intervals between heartbeats .  Who knows?  Who cares?   “No worries” she claimed.  We’ll re check in three months and then maybe get you down from methadone if there is no change or if it’s worse.  No suggestions on what they will use (if anything) to replace it.  Without something, the pain will give me a heart attack.  I just hope it happens fast.  (Drama Queen moment, dad….if you’re reading this….as I’ve always said to you….I just need to vent sometimes).  Anyway, that's the cause.  The pain meds.  Can't live with them, can't live without them.

She claimed I don’t have to think about reducing the methadone  yet….but if it had been any worse, then yes, they would have taken me off it.  I’m not waiting.  I’m lowering it by ½ tab for a couple weeks (that’s according to her guidelines) and see what happens pain wise.  I have zero idea what they will do to replace it.  When I was there last week they claimed it’s the best drug for me and that Fentanyl isn’t as effective.  Well newsflash; either is methadone anymore, except it seem to be messing with my heart.  I’ve always had a fast heartbeat but it’s been off the charts for a long time.  Even when I meditate, I’m lucky to get it down to 85.  Very scary.

I have lost 12 pounds since the last time I was at the pain doc, in February.  It’s now August.  And I just got on the scale.  I lost another two pounds since last Tuesday.  Granted, I have no appetite; I have to force myself to eat…..and the constipation is relentless too.  I feel like I am being stalked, I really do.    But I stocked up on food that I never even think about let alone eat; chips, ice cream….fattening stuff.  I just don’t like the taste of that kind of food….it has nothing to do with discipline….I simply don’t like fatty, greasy or salty food. I like smoked fish…that’s salty.  I need help.  But, I added the salty fattening food and I'm LESS constipated (this moment).  Perhaps too much healthy food isn't healthy.  Sigh.

The way I feel right now, even nothingness would be better than this constant, relentless, demonic, horrifically debilitating pain.  My dad has pain from spinal stenosis, but I just can’t imagine him in the kind of pain I am in  I know better than to compare….but if he can keep going out and staying active, I have to wonder.  He pushes through the pain and rest a lot the following day, I do know that.  And I use to be able to do that too.  Not anymore.  Not even with the help I’m getting from DSHS.  Of course, they are making my heart rate worse with weeks of unreturned phone calls regarding my finances.  I think they have ONE person working there.  And she’s been on vacation.  For the summer, apparently.  My social worker is a doll.  But she doesn’t have the answers I need.

Bawk, bawk, bawk.  I'll stop now.

Another Life?

I saw my pain doctor on Tuesday, and as is the process, I always talk to someone else first; usually someone who is in training and are in the “pain management” rotation…or, it’s something they really want to do.  Either way, it’s frustrating to start with the big bang (the very beginning) each time I go in and it’s a new face, full of questions.   But he asked me something I’ve been thinking about since I was there, and it’s now Friday.  So I have given the question lots of thought.

He asked me what I would be doing if it weren’t for my disorder and the pain.  I stopped short and replied, “I have no idea.  I have given up imagining another life”    For the most part, that is true.  But the greater truth is this:  I would not trade my life for any other.  I would not have it any other way, painful as it is.  And why?  Because it’s mine.  It’s my life, my painting, my adventure and my Karma.  I need to do the best I can with what I have.  We all do.  I mentioned this to someone once and they accused me of lying to myself.  Or maybe, I just have given up on life.  But I don’t think so. If I gave up on life, I wouldn’t be here.  And believe me, I have thought about the alternative.  Until I start thinking about my gift, which is my life, however it looks.  We're all travelers on this lonely road.

Today my new helper (Pam) came for the second time.  The first was Wednesday.  She works hard; she’s nice and really puts a lot of effort out for me.  I like her, I have no complaints (she’s a bit scattered, but she’s getting to know me and my routine so that will pass) but she’s not Amanda. I miss Amanda.  She’s in the process of applying to DSHS as an independent, and if that happens, I’d like to switch to her and stop using the agency that fired her.  I’ve talked to her a few times since it happened, and (this is one of the reasons I like her so much) she is just “on to the next” with high spirits, a good attitude and looking forward to everything she’ll have to do to get started.  I offered to help her with her web site and all that goes into setting one up  I don’t know a lot: I know how to blog, but this is different.  But I know enough so that the two of us can figure it out.  She’s very bright, too.  Pity.  Oh well, they’re loss.  And a big one at that.

With what’s left of today, I need to lie perfectly still.  My “remedy” worked great on Tuesday, but I have been backed up since.  I’ve been taking the Miralax again….it will clear up, no worries.  Meanwhile, I had a day from heck.  I ordered some vacuum filters on line and they sent the wrong ones.  I sent it back (so far, 24 bucks in shipping fees) and they sent me the same ones again!!!  And, when I did an online chat and gave them the model of the vacuum (a hand held one) they insisted I have the right one, even though it doesn’t fit.  Stupid doesn’t begin to describe it.  NEVER buy a Shark product.  You can’t find anything for them in any department store, NOR online.   I finally went to an Oreck store today and they actually took the shark, the wrong filters, and credited me $50 off the purchase.  It was still an expensive vacuum, but I need something besides my push vacuum.  The only thing I don’t like is it has bags.  But you don’t change them often, nor do you change the filters often.  And the store is nearby.  Whew.