This is Spinal Crap

My dad, brother, sister-in-law and niece came over today with leftovers from Thanksgiving.  My dad is a very brave man; he has spinal stenosis and is in the same kind of pain I am in yet he manages to get over here if he has the chance.  Of course, he can sit and I can’t….we were all talking and I started crying and said I didn’t know how much more of this I can take and felt horrible for saying it in front of him.  He came up with “Spinal Crap” and we all had a good laugh .  Old movie “This is Spinal Tap”.

I took a few moments with everyone and went over my DNR.  I hated doing it in front of my dad, but I wanted Francine (my sister in law) to just take a look at it as well as my brother and there is just so little time.  I want to send it back to the doctor to sign and send me an original.  I wrote a short note to the doctor and nurse about it as well, so they could see I understand what I signed.  I also made it clear to them that I am not considering suicide.

My nephew called shortly after they left but I put his visit on hold.  Hopefully, he’ll be able to get here tomorrow; after that, he goes back to school.  Then a friend called and offered to drop by.  I took a pass on that as well.  When the pain is in the stratosphere, I cannot enjoy the people I love.  It used to be a distraction at least, but not right now and maybe never again.  I mean, this stuff doesn’t get better.

Then, after they left, I watched an episode of “Bones” on Netflix.  It happened to be the one with the NF information and tiny story line.  I cried my eyes out.  My stomach has been awful; I have no appetite (again) and I am forcing myself to eat something, anything, to get the juices going again.  But if I want out, why am I doing this?   Well, my heart may be in heaven but my soul isn’t finished, I guess.  No wonder I feel confused, betrayed, frightened and sick.   My heart and head are in one place, my body in another, and my soul?  Who knows.  Driving me crazy, mostly.

Who Am I Today?

I have this fantasy about who I am.  In my head, I see myself as someone who can take anything thrown at her, but in truth, I am not.

In my head, I see myself as someone who doesn’t complain about the myriad of health issues I face, the main one being pain; but in truth, I do.

In my head, I don’t tell friends and family about those challenges but just suck it all up; but in truth, I tell.

In my head, I take each day as it comes and not worry about tomorrow; but in truth, there is a wide gap between me and Ram Daas.

A dear friend just took me to the store.  The pain was bad and we were coming up to a green arrow and I was afraid it would turn yellow and force us to stop.  It was a long light and sitting is horrendous for me so I said “go, go, go” and she got mad and I don’t blame her.  She said I could give her directions if she needed them but not that kind.  She said she remembered telling her dad the same thing.  Great.  Now I’m not just a bitch, I’m an old bitch.   But she was right.

I used to have the same conversations with Pam…I don’t do that anymore (usually) with the new helpers.  It really doesn’t matter how much pain I’m in.  They have to drive safely.  But I’m inside so much I forget what it’s like to be out in the world. My patience is nonexistent and it’s just too bad.  But taking it out on everyone isn’t the answer.

Of course, all these feelings come and go and change with the weather and my level of pain.  The trick is staying in the moment, remembering the Serenity Prayer and praying for other.  The trick is meditation, BioLateral music, my healer, healthy eating and a bunch of other stuff I slip in and out of.  The trick is remembering the tricks.

At the moment, I think my anxiety is about my lowered dosage which will start in January.  Gotta stop worrying about what may or may not happen come January.  And just leaving it alone with my pain doctor until it’s time for the next battle.   Need to rest up for that!

DNR?

I’ve been reading my DNR (do not Resuscitate ) papers that my pain doc finally sent to me.  I am not happy with the box he checked (I want comfort care only and my family knows it...he checked the one that includes breathing apparatus). I understand that he feels culpable if I should take my life, but I’m not going to do that BUT I am also through fighting.   I wrote him and his nurse a letter explaining and he may make me get it from my primary care doctor.   I just know I want it.

I don’t want to be a wuss but enough is enough.  People call me “strong” but I’m not anymore.  I keep winning battles but let’s face it; none of us will win the war.  What is the big deal about this anyway?  We treat ANIMALS with more respect.  We don’t give them some pain medication that doesn’t work, stick them in a shelter and force them to live their lives until their bodies give out.  It’s cruel, unnecessary and should not be an issue.

After all, I am not talking about euthanasia, though I am not sure how long I’ll want to live once they lower my pain meds.  They told me it “wasn’t good” for me to be on them for long periods of time.  A month ago they wanted to raise them and that was too much.  Then the nurse balls me out for not taking “enough” of my breakthrough meds. Now they lowered them as well.

I feel like I’m losing my mind.  They are generally supportive and gentle, but this constant change of attitude about what they want to do is miserable to deal with.  I do not want to start with a new pain doc, and I have to tread lightly or they will tell me to go somewhere else.  It is beyond maddening.

I mean, as far as the DNR goes, my letter to them (not needed for a DNR, I just wrote one) states all my health challenges from the pain to the gastrointestinal issues, to my eyes going on me, my hearing loss, the HUGE tumors in my legs and arms, the anxiety, depression and everything else….I want to wave the white flag which in my case, is the DNR.

And don't even get me started on the continued fallout from having my meds stolen.  I'm sure that's part of this, though they swear its not.

Sorry I've not been my usual one day at a time kinda gal.  Doing my best....friends, family, roof over my head....I am thankful for all these things, believe me.  Staying away from the news has been a challenge though.  Makes me grateful, fills me with fear.  Sigh.

New Development?

Lately, I have been sleeping very poorly.  Then, last night, or should I say, the “witching hour” I woke up at 3 and stayed awake….and in horrific pain.  I even took my breakthrough pill at 3.  I was going to take two, but since the pain clinic decided I need less, not more, I didn’t do that.  In the beginning the limit was 6 a day, which I never reached.  Now that I need, they want me to take 4.  I know they are worried about my weight, but hell, I could probably swallow the bottle and still not get relief that theory will not, however, be tested.   If I ended up brain dead instead of dead dead, my family knows I have a DNR, no extreme measures, etc., but still.  I will not put them through that.  I almost got up to write this, but wanted to give sleep a fair shake.

I managed to meditate a little which did help, but no sleep.  If I’m repeating myself, just ignore it.  I probably do that anyway!!  No blaming lack of sleep for those senior moments.   So I decided yesterday to write a “Day in the Life for One Woman in Chronic Pain”  and put it in the pages section.  I have to listen to my BioLateral music while doing this.  I don’t hold much back.  It’s longish, so it’s under “Pages” instead of posts.  You’ll find that on the right side of my blog if you’ve never been there.

Letting It Go

I had written another entry but it was so negative I got depressed reading it again (I always wait a day before posting) so I’m trying again.  Truth be told, I am in a world of hurt.  Lying down doesn’t even help anymore.  I’m in pain, scared and worried about what the future holds.  I am really worried about them lowering my pain medication.  That will start when I’m done with the few patches I have left.  I know they are worried about me being on this dose long term, especially with my weight being what it is.  You’d think it would work better since I’m so thin.  No such luck.

I know I’ve often written that pain and suffering are two different things, pain being something the body just does, suffering being our interpretation of that pain.  And I think about the people worse off than me and give thanks for what I have.   But that doesn’t seem to be working much anymore.  And the stress of what happened with Pam, plus the fact that they are decreasing my meds and I’m completely freaked out isn’t helping my pain levels.  I try and let go and release the tension and I’m usually good at doing that but not today.

I am listening to my BioLateral tape while I write this.  I’ve taken as much as I can take for a while, pain wise and it does no good anyway.  Once the dosage is lowered I may as well move into an opium den.  I’m not kidding.  My legs are killing me and I have barely been off the couch all weekend.  So I forced myself to run to Trader Joe’s with Barbara this morning.  I’m glad I did just for the getting out of the house part, but I’m flat out again.  I did eat a little soup and a bit of stir fry from last night.   Baby steps.  I AM SUCH A DRAG.  I have zero idea why I have the friends I have.  Seriously.  I mean, when they visit I try to be upbeat but there isn’t much to do except watch a movie.  It’s not like they climbed a mountain to see the Buddha.

Sigh.

Barbara, one of my new helpers just left.  She really cleans well and is kind hearted but not intrusive.   I enjoy our conversations and she knows when I’m not up for them.  And I make sure she’s up for it if I’m feeling chatty.  Oliver is trying to will me to give him another treat.  Will away, my love.  Mama’s down today.  He is especially cuddly.  G-d, thank you for sending me Oliver.  The best of the best.  I hope his extra cuddling up to my neck isn’t a goodbye.  He’s been doing it a lot lately.

And you know what?  I think of Pam, I pray for Pam, and I seriously hope she gets help and finds some peace.

Yellow Bird

I’m lying here (what else?) thinking about all the years gone by, all the pain that never ceases and am thinking about everything from my almost 19 year old cat, Oliver (who at present is screaming for treats but will not get them because I’m in horrific pain, I’m alone, and jumping up every 10 minutes is exhausting), to what happened with Pam.   I heard back from the Officer who took the information and he told me she has to go into treatment and stay clean a year and the charge would be dropped.  I asked if it was okay just to call and speak with her.  No contact in person, but a call would be fine.

We spoke for just a few minutes and she told me she was actually seeing it as a turning point and a wakeup call.  She said she understood why I had to do it and that she had left me with no choice.  I told her my angst over it that first weekend actually stopped once I turned my prayers away from me and on to her.  She cried. I cried.  And we said our good-byes over the phone, promising to get in touch again in a year.  I hope she succeeds.

I’ve been having a very difficult time lately and thus have not been writing much.  The pain has been horrific, and Tuesday I have to get to the doctors, a 40 minute drive each way.  The new person got permission from the supervisor to take me there (it’s in the next county so a no no) after I spoke to her and said Pam was the reason I had to go.  Which is true; they scheduled it based on how much they thought I was taking and when I told them what had happened they still want me to come in.  My next scheduled appointment will be a different challenge, but that won’t be for another six months.  By then I may have someone new willing to do it without needing permission.  Usually when I offer to pay for the extra gas they agree but this woman, Elaine, would not.  That’s okay; she has integrity, which matters to me a lot.

The emergency replacement worker was a doll.  She is originally from Sri Lanka but is married to an American and has lived her over 20 years.  She was a nonstop chatterbox, her cell didn’t stop ringing though she didn’t answer it, and she had all sorts of dietary suggestions.   I told her to email them to me since she isn’t going to be my regular.  So I have Elaine on T, TH and someone I have not yet met, Barbara, M, W, F.  I am going to have to be careful scheduling appointments based on their work schedule.

Lots of changed which equal stress which equals pain.  I always think I’m doing well when I’m not.  But two friends came over last weekend; one on Saturday and one on Sunday.  I watched “The Sapphires” which I highly recommend…about an aboriginal singing group from down under that were never famous but they sang all over for the USO during Viet Nam.  They only sang music that was popular then, but the beginning of the movie you hear them singing songs like “Yellow Bird”   Amazing.