Update

Just a quick note to let everyone know I did report Pam to her boss, my doctor and the police.  I felt pretty bad about it, but they betrayal helped me stay focused on what I had to do.    It's been an awful few days and I'll write more later.  BTW, I was left with no choice.  My docs needed to know I wasn't taking that many and they already won't let me have my full supply anymore.  Perhaps I can talk them into not doing that since they now know I'm not taking them and forgetting about it.  It was a real mess.  But I have been praying for her to heal and you do the same.....if you want to.

Another Cautionary Tale

Nothing is ever certain in life.  No one knows that better than those who, for no fault of their own, have medical problems that are unsolvable to date.  And those who live in chronic, intractable pain due to their disease or disorder must depend on, and trust, caregivers.  So must those not in pain, but the meds for pain are what everyone wants.  And caregivers are notorious for unpredictable behavior.

I thought I was the most blessed of those who need help.  Sure, Pam could be unpredictable in some ways, and yes, she was getting flakier and flakier.  But Friday she admitted to me she was the one taking my meds.  She claimed she only did it a few times, and they are under lock and key so I didn’t get it.  But I always have a dozen or so in my purse.  Which is always with me.  Except, a friend said, when you are in the bathroom.  Which is often.  I told her to leave, we were both crying, and all weekend she has been phoning and leaving notes on my door.   When you do that to someone, the trust is broken beyond repair.  And she doesn’t get it.  She wants me to lie to her supervisor and just say I want someone else for personal reasons.  But she has been going through red lights, forgetting things I want at the store (once I only had two things…and I always write it down….she called from the store because she lost the note and my pin number)  and she came back with just ONE of the two things.   So all in all, it’s time for someone new.

But the despair I have been feeling all weekend has been overwhelming.  So has thinking about the work ahead of me, dealing with my doctors who will not be happy (already left the message) and I haven’t a clue what will happen.  And the most important thing is that I will be out completely and not due until Thursday.  My nurse said she wrote a script to tie me over but the pharmacy wouldn’t fill it and won’t until Thursday.  I’ll have her call because I’m in agony as it is.  I don’t care how well you know your caregiver, you must be hyper vigilant all the time.  If not, this is what it will cost you and it's what I wrote to Pam in response to her notes…I haven’t had her in the house since.

·         My pain doctor thinks I am taking more than I realize and therefore, I need to tweak my pain plan.  While the pain has been bad, I am NOT taking as many as I thought (and forgetting).  This loss of pills is why they want to see me next week.

·         They may drop me as a patient

·         My insurance will not fill my order until it’s due, and I now don’t have enough to get me through        If I DO tell them, I have no idea what they will do about it.  I have no desire to prosecute, but they may.  And I MUST tell them because I don’t want them thinking I’m forgetting that I take them…they are changing my pain plan needlessly

·         I no longer trust you.  And I think you took a lot more than you realize because of the sheer number missing (she originally told me I was 80 short so I’m unsure)

·         I now suspect you were in my pills before I started locking them up…again, the trust has been broken.  It doesn’t matter whether I’m right or wrong.  When you look me in the eye and lie, how can I trust you?

·         I don’t want to go through the process of training someone else, but what choice do I have?

·         You could have had a bad reaction to my drug….and if they found morphine in your system, they’d come after me (even if you said you took them…I’d be in trouble for not keeping them locked up…even though I only have a small amount on my person)

Stay strong.  Keep fighting.  DO NOT TAKE YOUR EYES OFF YOUR MEDS regardless of how much you trust someone.  As my pain doc’s nurse always says “They’d kill their own grandmother and lie to your face”

I don’t know if she killed anyone, but she did lie to my face; I asked her point blank on two occasions.  It wasn’t until she heard me crying that she tearfully confessed.  The thing is, I under medicate so that’s why it took all this time to notice.  She claims it only happened one time right after her surgery.  I’d love to believe her.  I unfortunately, do not.  I feel awful, I have been struggling all weekend and praying for direction and strength.   Every single person I spoke with, and I spoke with at least seven, told me I have to tell her boss.  I don't even want to think about what would happen if I don't and she does this to someone else.  The trust is gone.  GONE

Who's on First

I just got off the phone from another frustrating “Medical Who’s on First” conversation.  I had an MRI of my stomach and pelvis about three weeks ago and had sent the results to my pain doc and neurologist.  My pain doc nurse and I had had a conversation about my meds and I mentioned the scan and she told me to send it to her and my neuro.  The next communication with her came when I called to renew my scripts.  She said they won’t look at the MRI unless I’m there so they can get paid.  Fine.  I get that.  I am due anyway, so I made an appointment.   Then I called my neurologist and left a message with the information about how to access the scan that was sent.

Today, after not hearing back all week, I called again and had to start all over They had no idea what I was talking about.  I explained the scan was of my pelvis and stomach and my pain levels changed and I want my doc to look at it.

She asks “so you want to see him about an image of your brain?”  ARE YOU EVEN LISTENING TO ME!  Where in my speaking did I mention coming in with images of my brain????  I told her I was sick and tired of fighting for my life and having conversations like this makes my pain worse and would drive anyone crazy, but when you are in the kind of pain I’m in its intolerable.  Then I asked if she had heard anything I said because the questions you pose don’t match with what I just said.  She started paying attention then.  Telling a health worker, even a receptionist, that you are sick of fighting for your life should be a red flag for them but at least they will call back this time (hopefully)..and tell me to come in….even though I explained how hard it is to come in and I’ll be there next week for the pain doc.  So no, all I want is for him to look at it.  Send me the bill for the five minutes it should take.  AUGGGGHHHHH!!!

I hope the people who are insured through the Affordable Health Care Act (I refuse to us “Obamacare”) get better attention then someone on social security.  When I had private insurance it was different, but it may be for other reasons too (the ill treatment).

No wonder I’ve been out of my mind anxious.  I have to remember to stay in the moment and get “out of my head” which can be challenging.  But when you listen to your heart and stay in the present, the cloud vanishes.  The trick is hanging onto it which is almost impossible to do without years of training.  Although I don’t have formal training, I certainly have life circumstance training.

My healer turned me on to this product called “Deep Blue Rub”   It comes in a few forms, but the rub is what I use.  It’s not cheap, but a little bit goes a long way.  I rub it on my legs and feet and it actually helps with the pain.  I trust her completely; you can only get it through this company called “doTerra”  It’s doterra.com.   They have all sorts of essential oils which she uses on me during treatment.  I ordered one of those as well.  Becoming a member gives you a better price.  

SAD

The end of Daylight Savings and the beginning of long days of darkness begins next week.  Seasonal Affective Disorder (SAD) arrives soon after, though I’m pretty much depressed year ‘round.   The good news it, that means I don’t have the disorder!  Hey, I’m trying to make lemonade here.   I’m out of sugar.

The pain is bad today…again.  The neuropathy is really bad.  An NF friend in MN mentioned Emu oil for pain.  It’s a topical and comes in a cream too.  I’m picking some up today.  I see my acupuncturist today.  I hope that helps.  I did sleep well for a few days but then woke up groggy so I halved my sleep medication last night.   Getting up and preparing to do nothing all day is exhausting.  It’s getting harder and harder but as my dad says, you gotta keep pushing yourself.  

Reading is still very difficult for me to do.  I miss it like crazy.  Nothing interests me.  I think all that time waiting for my prescription for my glasses, which still isn’t great, did something to my attention span.  Truth be told, I’m scared silly.  I’m afraid of ending up completely out of control of myself.

I just spoke to my pain nurse.  She had asked me to send my MRI results to them.  That was two weeks ago.  She had given me detailed instructions on how to send it.  Now she said “you aren’t going to like this but we can’t look at them unless we see you.  We have to get paid, that’s just the way it is” So I phoned my neurologist and left a message requesting that he look at them.   I will have to come in for that, I am sure.

She also asked me to count my breakthrough meds….and I’m short again….by 50.  I do not get it.  I need to start writing down each time I put one in my mouth….I swear I rarely take four a day, let alone six.  Something is not right and they’ll cut me off if this keeps up.  I don’t know what else to do.  They are under lock and key, the key being in a separate place from the lockbox.  Then she called back because I had left her two messages, freaked about the missing meds.   She calmed me down and said she was concerned because things have changed a lot for me over the passed few months and she is worried I'm taking more than I think I am, and that perhaps it's time to up the dosage.  Talk about hearing things wrong!

Ah, the life of the chronically ill.  The pain must be really messing with me.  I wish I could just let go.

To Pray

The pain is the worst it has been in a while….been creeping up on me and now it’s a full blown assault.   I woke up yesterday with two red spots on my foot and I dismissed them as being the result of the socks I was wearing…but today they have changed a bit and I think now I’m witnessing the overnight appearance of new neurofibromas…they seem to come out of nowhere, like the rainstorms of summer and just as destructive.   Which means there are rainbows if you know where to look.  Sometimes I remember, sometimes…not.

I sent those MRI results to my neurologist and pain doc last week and haven’t heard anything.  It’s transmitted digitally; no snail mail.  Anyway, I’m going with the no news is good news adage.

It’s getting harder and harder to concentrate; to read, to write, to pray.  I think having a few doable days in a row is a blessing and a curse.   I get to a point where I feel I’m accepting my life without complaint (rare) and when I do, I breathe easier.  Then I have the doable days and I’m out in the world to whatever degree I can handle and again am reminded of what I am missing.  But in the gift is the twist.  When I feel better, I take 20 steps backwards in the coping category and end up angry and without skills when the pain comes back…mocking me for having a few creeping moments of “what if I was healed spontaneously?  Pathetic.  The Universe’s joke on me.  Let’s see how long it takes before she starts thinking about miracles. 

To that I say, if there is to be a miracle, let it be for someone younger than me, someone who still has a long life ahead of them.   Someone who has been fighting the good fight.  Someone who perhaps doesn’t have family support or financial resources to get the help he/she may need.  I’m not writing that to get a pat on the back from anyone in the world or the next.  I just want to go Home, so in a way, it’s selfish.

I did make it to Whole Foods on Friday last week.  Haven’t been there for ages but was hungry for something yummy.  I wanted to make a return trip today, but alas, that will have to wait.  I’m hoping for tomorrow!!  My sister got me hooked quite recently on their brand of chocolate chip cookies, 18 to a bag.  Then I got some delicious deli “California Quinoa” which is their particular concoction of the grain.  I just read the ingredients on the back and will one day make it myself.  I make quinoa all the time anyway….thinking of warmer recipes these days!

Worst Fear

My worst fear, I think, is coming back into another life back here on the once beautiful planet which we systematically destroyed over centuries of abuse.  We just don’t get it.  America is the joke of the Universe.  A good, no great idea that turned into an unfunny joke.  I think I have been wanting out for so long, wanting the pain gone, wanting to be either fully engaged with life or to move on.  Move on into a hopefully better place where there is no pain, no bickering between people and no power hungry control freaks who would rather be “right” than to be human.

Anyway, my GI doc had me do an ultrasound two weeks ago and today I had to do an MRI because the transvaginal exam was not going to happen….too many tumors…it would hurt like hell (it hurts most of the time on its own) and they’d probably damage something.  I went with my gut.   So I go for the MRI and THREE PEOPLE tried the IV for the contrast dye and none of them could get the needle in my vein….I was dehydrated because they told me not to eat or drink anything for 7 hours before the exam but since it was in the morning, I hadn’t eaten or drunken anything for over 12 hours.   Six different sites, three different people and they gave up.  So who knows what the doc will think but when you tell someone not to drink anything they are going to get dehydrated; and that makes it hard to get the needle in the vein.  Duh.  It’s so frustrating when you’ve been to dozens of these bar-b-ques and you know what to expect but no one listens or credits you for knowing your own body.

So they just called me and said they were neurofibromas and lots of them.  Pain meds were offered,  Right.   I need to get those results to my docs at the U.

Pam hasn’t been well; not so much her liver problems, though I think she needs help with dealing with it, but more of a lot of little things and really bad memory stuff; I have enough problems in that area, I need someone sharp.  Don’t know what to do.  This has been a very bad week with cancellations on her part and lots of phone calls and questions that I’ve already answered five or six times.  Some of that has always been there; but it’s worsening and I’m at a loss.  I’m hopefully getting someone on Thursday because she once again made a personal appointment during the time she sees me.  She doesn’t understand you can accept or reject those appointments and make a different time. She’s adamant she can’t change this one and I won’t change mine because I’ve done it to her twice already (my acupuncturist) and I need to go.  Hopefully, they’ll find someone to help me.

And to top it off, Pam’s boss, the supervisor, is already in dementia; I told her I need a ride on Thursday and someone showed up today, Tuesday and can’t help on Thursday.  And the supervisor is out today.  If I take a taxi, I’m charging it back to them.  I can actually do that if it’s medically related and it is.  Sigh.

The No Problem Problem

I was having a pretty good day yesterday pain wise although it’s sneaking up on me at about 3 in the afternoon: I had been to the dentist AND the store then got home, did the sous chef thing for dinner because I do things in small steps, resting frequently and since it was starting to hurt, I got thinking about the no problem, problem.  I used to have this thought in my head when I was in my twenties and even wrote about it so it is kind of a twenty- something story but not necessarily.  It goes like this:

One day, you and a friend make plans to go shopping for the perfect red dress you want for a party the two of you are going to be attending.  You’re both very excited because you are also planning on going to a nice restaurant, spend hours looking for just the right thing and if there’s time, maybe take in a movie.  It was going to be a great day!!  So, off you go, giddy and filled with anticipation, your hard-earned money tucked safely in you purses.  You climb in the car and head for the mall.  The one with the upscale designer clothes, not the cheap rip-off ones you could usually only afford.  This was different. 

So you go into the first store on the long list of options, and there in front of you the dress of your dreams is draped fashionably on an oak table.  It was an awesome.  And it was your size.  You immediately ask the clerk for help, go into a changing room and try it on.  Perfection!  Every way you turned in the mirror, all the mirrors around you that gave you front, back and side views told you this was the one.  This was it.  You had to have it.

But then a thought occurs to you.  You and your friend had planned the whole day around shopping for this dress.  Would she be mad if you said you didn’t need to look any further?  What would you do with the day?  You know your friend already had her dress for the party.  It was too early for lunch by several hours and the movies didn’t start until after lunch.  Browsing bookstores is always fun but for three hours? 

And then, the piece de’ resistance; you think, maybe this dress isn’t right after all.  Maybe you can ask them to hold it for you for a few hours.  In your heart you know that’s not true but you question it anyway, driving a wedge between what you know and your doubt.   This was the dress.  But this wasn’t fair!!!  You planned the whole day around this….you LOVE to shop.   You are desperately looking for any reason, any one at all, to make this day into what you had in your head: shopping, shopping, shopping, lunch, and a movie.  Silly?  Maybe. Forty years after I wrote it, I can’t really relate to it specifically and of course, it’s not rational or even important in the scheme of things.  But it’s a pattern you can easily develop.

The thing is people actually do that, including me.  I’m not a shopper so the story doesn’t describe me, but can I get the “no problem, problem” syndrome?  You bet!   We all make problems where none exists instead of adjusting to the situation, because situations change…constantly.   We adjust, we transform, we accept, we try and turn it into something fun…or, we waste a lot of time doing what isn’t necessary and in some cases, make ourselves sick because of things we can’t control, don’t need to control and should in fact, stop trying to control.  Gosh, if only I could do that all the time!!!