The Tipping Point: So Long, Able Body

It’s not here yet.  I’m not there yet.  But it’s getting closer.  I have to stay alert, lest it overtake me like it did to Dad, and leave me too crippled to decide my own fate.

That’s what happened to Dad.  It happened over a period of years.  I could see it because I lived far away, and when came to visit every 3 or 4 months, I could see the changes.  But one day, or so it seems, he was frozen in thin air.  His body had just frozen.  He could walk, for a while, with a cane.  His hands would not cooperate enough to operate a wheelchair, so he shuffled it around using his feet.  It was good exercise, I thought.

He tried to keep writing–he was a wonderful man of letters–but his pinched nerves refused to work his hands.  It cost his soul a lot, not to be able to write his memoirs.  (No, he wouldn’t do all the alternative things to physical writing.)

Then one day his legs stopped working.  I think he had a stroke.  He had lots of them, and caused him to have difficulty speaking, kind of like Moses, only different.

These few words about Dad serve as a preface for what I am about to tell you.

I have been having excruciating pain in my neck, due to arthritic vertebrae.  The holes in your spine where your nerves branch off your spinal cord and end up moving everything and feeling pain and whatnot–those holes that belong to me are getting calcium deposits on them, which is squishing and poking into the nerves in my neck.  Plus, the spinal canal (you know, the canal your spinal cord runs in–helpful, ain’t I) in my neck is getting narrowed, squishing the spinal cord itself.  I guess that’s why my arms ache and tingle all the time.

Today I drove the hour-and-a-half to see a nurse practitioner at the spine clinic where I get things that so far have not helped, like an injection of steroid stuff into my neck (that was fun) to medicines that allow me to sleep for three days at a time between doses.  Who needs pain meds when you’re fucking asleep?

For the past month or so my neck has been killing me to the point where bending over to pick up something on the floor gives me a jolt of pain, 8-9, sometimes 10 on a 1 to 10 pain scale.  It’s all I can do to hurry over to the bed and pack myself in pillows so I can’t move.  After a while the pain lets up, but not all the way–enough so I can get up and take some acetaminophen.  I don’t do opiates like Percocet, because they make me itch.  Every once in a while if nothing is helping–immobilization, hot packs, arnica oil, CBD oil–I’ll take one of my carefully hoarded Tramadol, a semi-synthetic opiate that relieves my pain just down to the barely tolerable level without making me dizzy or itchy.

So I saw the nurse practitioner at the spine clinic, and unlike the actual doctor of the clinic, the nurse practitioner had some very good and practical suggestions, like physical therapy with massage and electrostimulation, and a hardshell neck brace for when I have to do anything.

Since she seemed to know what she is doing, I asked her point-blank: what is the natural history of my disease?  Us medical people call the usual course of an illness to be its “natural history.”  I like that, because I have always loved Nature, and have been an avid Naturist–no. no, I mean Naturalist–all of my life.  So I asked her about the natural history of my disease, and she said “Not good.”

“What do you mean, “not good”?

Well there was a point where surgery–

“Surgery?  What, they take a Dremmel (an all-purpose engraving and grinding tool) and ream out the foramina (holes where the nerves pass though)?”

Yes, in fact.

“How good is the surgery?  What’s the success rate?”

She shakes her head.  Not good at all, she says.  About like lower back surgery…….which stinks.

But, she says, you might consider it when your hands get too numb to work.

My whole body, including my mind and soul, was numb as I walked out to the parking lot.  “When,” she had said.  Not if.  When.  I kind of thought that’s what’s in store.  My left arm, the one where the nerves are more severely damaged, “goes to sleep” quite a lot, and it aches and tingles pretty much all of the time.  It’s definitely progressing.

And then we come to my right shoulder.  The end of my collarbone that attaches to another bone in the shoulder is so gnarly with arthritis that my last steroid shot not only did nothing, but the difficulty of getting the needle into the joint (because the joint is almost closed up) has made the whole thing worse.  I have constant pain and limited mobility, and probably will end up having the end of that bone sawed off, which is supposed to restore mobility.

I have firmly and completely decided that I am not, God willing, going to let myself go the route my father went, completely dependent on others for years.  And unlike Dad, I don’t even have anyone to care for me should I be suddenly a body with arms that don’t work.  I would be in a nursing home until I died.

I’m watching very carefully for that tipping point, the one between independence and dependence, and praying it doesn’t sneak up on me.

As one of my Physical Medicine professors used to say–he was in a wheelchair due to MS–everyone is TAB–Temporarily Able Bodied.  And so it is, with me, anyway.

I used to love to swing an axe and split wood all day long, or take on an unruly horse, change a tire on my 3/4 ton Dodge Cummins Diesel truck…no more of that for me.  I had to trade the truck in for an easy-to-drive car.  My hands only hold out for so long at the keyboard before they seize up and I have to stop.  I can’t play my banjo anymore.

This is me playing my 1897 Fairbanks & Coles fretless banjo in 2005:

 

Life is getting less and less attractive to this formerly physically active person.  I spend virtually all of my time in my recliner, which is the only place my body doesn’t scream at me.  Hell, my place has not been vacuumed for over a year, because I can’t look down or look up or lift anything over two pounds.

It’s getting closer.  I have to be careful not to miss the tipping point.

 

Leave a comment

33 Comments

  1. So much pain…as I read this I imagined myself giving you a a shoulder massage which would probably be the wrong thing to do
    but when I see pain the “fix it man” wants to touch it and make it go away…when I read your words I see you in my mind, at the doctor, pressed between pillows, screaming in pain…

    I want to say that where there is life there is hope but I have seen
    that this is not always true.

    It makes me sad to think of you in pain — It makes me sad to think of you gone.

    Reply
    • Thank you so much, Rob…it makes me feel better to know you care! I’ll take that shoulder rub, by the way, with some of my home-made CBD oil…you will know the right pressure, I’m sure. Yes, someday I will be gone. So will we all, since we are made mortal. My wish is to have the presence of mind to know When. Blessings………

      Reply
  2. Laura, I’m so sorry. I have lower back issues (DDD) and at one time was in a similar place as you. i just have no words for you other than i can completely empathize with the pain and numbness…just not with the outcome. i wish there were some words i could say, some thing i could do, some wish i could make, that would help you. but all i have is my caring and support, and i do wish you the best in combatting this thing, in keeping your mobility for as long as you can.

    Reply
    • Thank you so much, Kat, for your caring and kindness. I started rupturing discs in 1987. Since then, I have 5 documented ruptures. I spent a year in a molded plastic body jacket to try to stabilize my spine. I have been in pretty much unremitting pain since then. I guess if I was looking at lower body paralysis, that would be doable with a reasonable amount of assistive devices, alteration of vehicle, etc., and I could live with that if the pain was not intolerable. But since I’m looking at the prospect of quadriplegia….nope. I can’t live with that. I have to catch it before I become unable to end my life peacefully. Not a pretty subject, but while I still have the ability to make my own choices, I have to think about it now, and not let it creep up on me like Dad did. He was always my teacher in life, and in his dying process I learned what I want and what I most emphatically don’t want. I wouldn’t advocate suicide to anyone else, God forbid. Everyone has to be very careful about how they use this precious time that we are allotted. We do the best we can, and some of us are taken gently, and some of us, as Dylan Thomas said–“Do not go gently into that good night.”

      Reply
  3. All.can tell.you what has saved me. I have been doing Reki for over10+ yrs,and has saved me more than once. My prayers are with you,stay in the lite
    As always sheldon

    Reply
    • I hear you. My first awful bout with spine disease was in 1987. I had to have emergency surgery on my neck because a disc had ruptured and was pressing on my spinal cord. Then I ruptured 3 lumbar discs. I was on huge amounts of pain medicine, walking with 2 arm-brace type canes, and unable to do basically anything. My acupuncturist introduced me to the woman who became my Taiji/Chigung master. She does chigung treatment, which is similar to Reiki–it moves energy through the body/mind/soul and relieves blockages. It’s different from Chigong exercise, although I did learn that too. She had me off of all pain medicines and walking unassisted in two weeks! The neck issues are of a different kind, and the bones are becoming tight around my nerves. Unfortunately, Chigung is not able to reverse that kind of disease. Might help with pain, though. I’ve had a few Reiki sessions recently and nothing happened in the pain department. I have a few other modalities I’m going to try before I throw in the towel.

      Reply
  4. Laura, keep trying your other modalities! Life is like a playground, teeter-totters go up and down, swings go back and forth. It’s ever changing from one day to the next. Prayers for less pain, and good thoughts coming you way. So sorry for your intolerable suffering! Christine

    Reply
    • Thanks, Christine. I’m past the point is ups and downs, except when I forget to put my Lithium in my med box, which recently happened and set off an unpleasant few weeks…That’s the kind of pain I know will go away, and I always have my rTMS as a backup if drugs don’t work. It’s the physical disability/pain part that’s got me planning ahead. I inherited this thing from my father. I watched him slowly crumble, in intractable pain. Finally Hospice, morphine not soon enough. He had my mother, as awful as she was to him, to at least feed him. And I was there to care for him, too. I have nobody. I have no money to pay for caregivers. Hell, I don’t even have a bathroom! It would be the nursing home for me, for however long I stayed alive. I would no longer have the use of my left arm and legs. I’m not going there, Christine. It’s off the menu, if I can catch it before out catches me. I don’t foresee this happening for another year or two or three, but I sure hope I catch it in time.

      Reply
      • So far you’ve been on top of it. And holding on for life. I can see your point of catching it before it catches you. Scary to think that way! But that’s reality. More good thoughts & prayers. Christine

        Reply
  5. I’m wondering if you have written your own ending yet? All these posts seem so calm, regulated, certainly NOT bad in any way. But, it’s like there are two people. You: rough and raw, and you, precise and predictable, forming words for sentences in a very controlled way. Tramadol never did anything for me.I don’t think most doctors know anything about chronic pain unless they live with it. Seriously. Let yourself live as you feel, you deserve that to get over your loss, your devestating loss over your father.You will never be the same person you were before he died, I can’t lie to you. But, you will acclimate, this I know for sure.  Warm wishes, Laurie http://hibernationnow.wordpress.com

    Reply
    • Hi Laurie. Yes, I have written my death, starting in 2001. I have a whole journal devoted solely to my topic.

      Yes, you are seeing the life of a physician, up close and personal. I can’t do links on my iPad…if anybody knows how, please tell me!

      One post on this blog, “Vascular Surgery,” I wrote in the early 2000’s ( boy that sounds weird…2000’s…time flies) is one of the many suicide stories I have written. I keep them to myself, as they involve strategies and methods that might give a susceptible person ideas….the one on this blog is so technical that it would be impossible for anyone but a trained surgeon, and they already know.

      I don’t fear death at all. I’ve been immersed in it. I’ve seen so many different kinds of death that I’ve felt like I was in a death supermarket, between the pediatric ED and the various ICUs I’ve worked in. I don’t have anything to settle. It’s all arranged.

      It won’t be for a couple, maybe a few years.

      Yes, I specialize now in raw fiction and memoir. And I’m a good topical writer as well. Have you read my “about” page? It explains a lot.

      I’ve just become familiar with a wonderful blog, “Behind The White Coat.” It’s written by a physician who could be my sister. She writes about her human side, and the conflicts one encounters being both a human, with raw emotions, and the cool-headed doctor facing tough situations and decisions. Highly recommended!

      Well, I have to hit the keyboard and do some actual work…a volunteer project for a science lab with no budget.

      Be well, take care, and I really, really appreciate you, Laurie!

      Reply
  6. Hi Laura, so sorry to hear of your illness. Why will the doctors not do the surgery to enlarge the openings for the nerves and the spinal cord? What about shaving the shoulder, why don’t they do that? This is a purely mechanical problem that should be able to be fixed enough to give you a lot more relief. Please consult the best physicians in the field, no matter where they are. Don’t give up! I’m from Buffalo NY and know the Buffalo Bills’ orthopedic surgeons are tops. Here for you with Hugs. And come over for dinner anytime 🙂

    Reply
    • Unfortunately, the success rate for that type of nerve decompression surgery is very poor. They’re using things that look like Dremmel tools, dentists’ drills, you know, Carpentry 101. Why they don’t use laser tools, I don’t know. As for shoulder shaving I know a very good ortho a couple of hours away, well worth the trek.

      All me here–how are YOU?

      Reply
  7. See? I knew I’d get chastised for my terrible nutrition habits. I do make a delicious meal on Friday nights, and if I am judicious I will have leftovers for a day or two. So I do actually have SOME good nutrition. My evening noodle soups have some kind of veggie, a beaten egg, tofu, and chopped fresh cilantro on top. Not so bad, eh? And oatmeal…I dress mine up with a tablespoon of almond butter, a squeeze of date syrup, and a splash of half-and-half. Oh, and I cook my oats with a mixture of turmeric, cinnamon, and Himalayan pink salt. You have to put the oats in the pot and add water just to cover the oats, turmeric, and cinnamon. Cook it up and eat it!

    Reply
    • Wow! That is super healthy, everything you have described here. Well, I am happy that you are taking care of yourself and really your nutrition is very good. I’m going to try the oatmeal recipe with Turmeric! It sounds really good. Take good care of yourself and I hope your suffering lessens so much that it disappears. And I hope for vibrant health for you. Hugs.

      Reply
  8. I am starting to feel the slow grip of age. . Luckily with little physical pain, mental pain? …. 😉
    I need readers, need to loose a few lbs, and I’ve lost my pep. Nothing to really complain about tho.
    I’m at a loss for any advice. I will send you hugs and happy thoughts tho!
    Love the banjo playing! I always enjoyed it since I heard Steve Martin play. Funny huh?

    Reply
    • Steve Martin has finally seen the light and is now playing clawhammer like you hear me do on the recording on my page. He’s really good, of course.

      To get more readers, find people with similar interests via WP Reader and leave a comment on their page. If it’s a good comment, they and their readers will reply and/ or follow. Good luck! No advice is appreciated. I know people have the best of intentions, and so do I when I offer unsolicited advice. Glad you like the ol’ banjo!

      Reply
      • Ha ha! As we are WP buddies, I know ‘readers’ are implied to be folks that read your blog… I was joking that I need reeeaders, as in glasses to read your blog!

        Reply
  9. Loretta

     /  January 28, 2015

    Laura – please forgive me in advance – I know how frustrating it can be when well-meaning people who have NO IDEA of my pain suggest something that is so off- the- mark. I’ve got 3 medicine suggestions that I hope will enable you to say “not today” for a long while… I too have tried the meds/procedures on your list, as well as x- ray guided facet joint blocks and nerve blocks with declining success… For gods sake I hope your injections were guided…

    My neck pain and arm/hand numbness ramps up with activity and something that has REALLY helped me (eg. enough relief to actually fall asleep!, or enough relief to stop the downward spiral from overtaking me today) – I use a compounded topically applied Amitriptyline 5% Lidocaine 5% in a lotion base (not that sticky crap that gets in your hair) and it really helps stop the ramp-up that you know is coming after an activity. (I know it sounds implausible, but the sticky lotion changes how I move and that causes the medicine to not help as much…)

    Another topically applied compound – 8% or 10% diclofenac in lotion not in sticky crap – stomps down the inflammation pain… that help sometimes (10% success maybe)…

    The third thing that helped me: after four months of biweekly 1 g injections of B-12 my arm nerves work way better. I have less arm numbness and radiating pain – I don’t wake up during the night screaming from arms having “fallen asleep” (that’s a misnomer from hell) anymore… or at least not as often.

    I hope these are new things that you haven’t yet tried, and I also hope they help you like they have helped me. We’re all different, I know, but I’ve been better able to live “in the moment” and postpone thinking about my tipping point. My dogs don’t have anyone else so I need to last long enough to keep my commitment to them 🙂

    Reply
  10. WOW, I didn’t know those topical preparations are available! I’m deathly allergic to both Amitriptyline and Diclofenac, but I hope others will read and try this…do you get it done by a compounding pharmacy? I am using CBD oil, which I make myself. It does help immensely. I just started on Gralise, which is a long-acting form of Gabapentin. It helps A LOT. Oh yes, my injections were guided. The doc who does the injections is a specialist who does nothing but injections, so he really knows what he’s doing. I’m not having any more surgery. The disc in my neck HAD to come out as it was pressing on my spinal nerves.

    My dog is rather a deterrent, but the tipping point has not yet arrived, and I will find her a new home when it does. Being a Lhasa Apso, she is likely to outlive me (they live 18-20 years!). She’s a good girl, great company, and not too rowdy. Just right for me at this point in my life!

    Reply
    • Loretta

       /  January 29, 2015

      I think it’s the topical Lidocaine that provides the majority of the benefit so DO search it out. Yes, the compounding pharmacy mixes it – but I think there is a prepared formulation of 5% Lido sold in a tube – maybe your pharmacist could look it up. I’m Canadian and the options are sometimes different between Canada and the U.S.A. And don’t discount the strange but welcome benefits of the frequently injected B-12 – it doesn’t fix the structural problems but it somehow improves the blood supply to the nerves and therefore improves their ability to function even when structurally restricted (my theory of how it feels like it is working for me.) I’ll try to find some CBD oil – I haven’t tried that – thanks!

      Reply
  11. savemefrombpd

     /  January 30, 2015

    So sorry. Back problems are so so difficult to treat because of the risks of damaging the nerves we need in order to be able to walk and move as it is. I know that you know this.

    My dad had two traffic accidents several years ago. He is a taxi driver and was really active before running marathons and playing football with even teenagers until he was in hos 40’s and had the accidents, both not his fault. Drink driver and stupid driver going through a red light. So my dad is on painkillers every four hours. Definitely after all these years since the accidents they are less effective and he’s more just hooked on them more than anything. And they also can’t operate as his slipped disks are right low where all the nerves are so it’s too dangerous. He has also had pain injections but it does very little to ease the pain. The injection probably is more painful than his back!

    So I have seen my dad go through this and like yourself being so active and able bodied to going like this is extremely upsetting to say the least.

    I am just so sorry to hear you suffering in all of these ways. I know you are a strong person regardless of your physical difficulties so try to keep on that route… I know that is by far easily to do and I can only imagine how awful it must be.

    I’m in hospital and reading tehillim sometimes at 1 or 2 hours a time. I also used the computer in the art room to create pocket sized tehillim and prayers for the sick. One tehillim for me and a refuah shlema for am Yisael and then myelf and another tehillim for the land of Israel against it’s aggressors and safety and so on.
    If you’d like, please let me know your Hebrew name so I can pray for some relief for you… I would like to do that.

    SS. Much love xx

    Reply
    • Bless you, my sweet one….sitting in hospital davening Tehillim…I’m sorry you’re having to be in hospital but what a wonderful thing you are doing!!! My Hebrew name is ליבא פייגא בת גולדה if you want to give me yours I will daven for you as well. SS motek!

      Reply
      • savemefrombpd

         /  January 30, 2015

        I can only keep asking Hashem over and over to please help me and release me. My book of Tehillim is next to me by my pillow, I’m reading it for hours on end every day. When I can’t sleep and it’s 3am, 4am until 5am. Put some personal prayer in there and pray for all of am Yisrael. I can’t shy away from the religion as much as I struggle with it. I know it is something that can please God I can enjoy in the future. For example, to enjoy Shabbat and not feel like it is just something to get through.
        Prayers in the airs of the holy city in your name.
        Mine is אביה בת שרה
        Thank you too 😉

        Reply
  12. Hi Dr. S.,
    It’s been a while, sorry. What, in your opinion, is the natural history for bipolar disorder? Doc

    Reply
    • Well hi there. Nice to see you again! First of all, I am wondering what sparked your question. I’ll answer it as best I can, with the little information I have. Bipolar is an illness that can take many forms. A lot can be managed with medication and lifestyle changes, such as keeping a regular schedule, making sure to get enough sleep (even if one needs sleep medication to make sure), and making sure to go to sleep at the same time each evening. People with mild bipolar do well with this. Unfortunately, like many chronic illnesses, BP tends to worsen with age, so one needs to stay on top of things. Anyone with BP MUST have a psychiatrist, and ideally a therapist too. My therapist has been invaluable at helping me work through issues that are triggers for me, and she also helps me sort out whether I’m having normal emotions or am sick. She also fills out my disability forms etc. I can tell you that my illness has been stable since I was a child, and I’m 61 now. That doesn’t mean my illness is mild, it just means it hasn’t worsened. I know other people whose BP has improved with age. So as far as natural history goes, I would say it’s very individual. It depends on one’s social support network, stability of relationships, general health status–additional diseases can certainly make BP worse. I don’t know if this answers your question, but if you need something more specific, please ask!

      Reply
  13. Thanks for your response. What sparked my question was your comment that you are facing 2 terminal illnesses – BP and spinal stenosis. Doc

    Reply
    • Ah. Yes, unfortunately, BP has a 20% mortality rate, including suicide (active or passive), homicide, neglect of other co-morbid illnesses, or ever the existence of other illnesses such as heart disease. In my case, I have a progressive, chronically painful illness that will eventually result in my being unable to care for myself. This is an unacceptable state of circumstances for me, and I intend, with great hopes, to end my life before that becomes a reality from which I cannot escape. At this time, even states like Oregon that have legalized physician-assisted suicide, disqualify a person from consideration if they have any co-morbid mental health diagnosis. It seems that stigma has stepped in once again, to force us into unpleasant and possibly ineffective DIY suicides. Grrrr.

      Reply
      • I believe we are of similar minds and i have, gratefully, a suitable plan in place. DIY without real knowledge and access must be terrifying.

        Reply

What's your take?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: