Options, Choices, & Druthers

It’s been a bit since I touched base here and that is the whole idea. However it does take a willing partner to do the writing. That partner of course would be thy.

Last time I wrote I was in a pretty crazed state. having just returned from the second meeting with the doctor that took some doing to see. It was a good meeting and I walked away feeling some hope.

HOPE  must be part of the program that gets you through living with chronic pain. One of the Big guns in your arsenal against 24/7 pain.  It’s different from acceptance which is also vital, But hope is what sometimes all we live on. And if that hope is somehow taken away or smashed out right in front of you it can have devastating effects on your soul forever. After being told there was nothing more that could be done for you –  can leave a scar that will take some time to heal. It is about a bond of trust between healer and the ill or injured. Hope for me happens to include being based on the ability to trust and turn to My Team Captain, a person who will vow to help me navigate through the muddy and swelling waters of illness and help me find my clear course.

It was brought to my attention in the most gentle &, loving unintentional way today that I should share a bit more about what is going on with me here on my blog. This blog  Be real. I tend on my other blog, Barefoot Baroness, to leave my health stuff out mostly. And certainly I try to remain upbeat. It’s not hard most of the time as I am by nature a happy person. But there are times when like all persons, especially those who deal with any chronic illness and/or intractable pain  that are unable to get a handle on the symptoms no matter what they do or use. I know. Foe me it’s pain and fatigue. The fatigue is bothersome but I can cope.However with pain there are days when all I can do is pray for merciful drug induced sleep. Those are the days when I am unable to power over the spine pain.

And then I also have Mack Truck days, where everything hurts, don’t breath on me kind of pain. It feels like my whole body is on day 2nd day after an awful car accident. I have heard other “Fibromyalgiacs” refer to this wide-spread pain as feeling as if they’d” been hit by a Mack Truck” too.  It’s on a pain scale variety anywhere from 4 to 7. 0 being no pain – 10 the worst you’ve ever felt. Such as where I have been with the spine pain. It’s somehow much more difficult to find alternative ways to handle the spine pain. I’ve been told that nerve pain, which of course would be spine pain, is the most difficult of type of pain to treat.

I have been living with the Mack Truck pain and the Spine Pain for too long again. I’ve gone from years of having no clue how to cope, to doing really well, to this again. And what was frustrating was knowing all the time that there are options, that there had to be. That at 57 years old a normally other wise healthy woman was told that there was nothing left to be done short of more spine surgery; or else live with the symptoms that don’t get better could not be so. Oh no way. 

I hope not to rehash things I’ve written about over and over. My hope is that this will be a profession on my part of all that HOPE brings.

My HOPE was restored with my new doctor.  Dr. Jon  Swift, who is now my new Team Captain. He will help me by being the manager of my team research  for what’s best for me, what my options are worth considering, and all the factors involved. He will help me find adequate treatment and he’ll apply it.  I’ve learned a lot since those naive days os the early 1980’s when I was implanted with toxins but I’m still a layperson and often at the mercy of my teams knowledge and education. It’s imperative to trust your team, and to have someone trustworthy at the helm of your ship.

Almost one week ago I met again with Dr Swift, our third of now three visits. It was even better than the first and second visit. Of course that isn’t saying much considering the first time I was angry, the second time in more pain than I knew how to deal with. This man is a huge guy. I am a short woman. I also have cervical issues and a cervical fusion which makes looking up difficult and tiring to my neck muscles. This kind doctor who obviously works with many patients like myself.  As we were talking I suddenly realized he is lowering his stool. He never missed a beat listening to me which was clear by his responses, He lowered it to where I’m certain his knees could not have been comfortable, just by seeing them almost touch his chin would tell even the dullest lightbulb this was not how he would choose to sit. When I thanked him later as I was leaving for his time and this gift, he spoofed. He actually spoofed! He said that if he is the doctor  he should be and could not read the discomfort in his patient’s eyes while trying to talk with him than he was in the wrong profession. If this man had done nothing else for me I’d still like him. I mean, what’s not to like, right?

After spending 20 minutes talking about my shoulder x-ray results (which are fine), where and what all of my upper back, neck, left shoulder and arm symptoms are from (my spine) we then talked about my options.

Yes, sweet options!  Choices. Druthers. How novel.

Oh, one other thing he did that day to which endeared me was he scheduled me for a brain MRI. Since it had been more than 20 years since I’d had one,and technology has changed just a tad bit he thought it wise. I have chronic migraines. He was just being prudent and as it turns out that image was awesome too. Nothing to report except the hot spots which he explained and I’d been old before are from Fibromyalgia. (And there are still non-believers?)

My problem with my spine aside from the osteoarthritis (which is really something that not much else can be done for) is I have a few things making my spine unhealthy. I have the  3 blown discs for which I have a grafted fusion of a Titanium plate for in 2000, and albeit the hardware for the fusion and the actual graft are really healthy my spine is diseased above and below the fusion. I also have stenosis and spondylosis and included with these are the Giant Cell Response, Connective Tissue Disease. and Fibromyalgia. Just the big guns do I bring to this party.

The fibromyalgia, Giant Cell, and Connective Tissue Disease all can cause pain too. And I am one of the blessed ones.I can feel pain. But there is a big difference in the pain and I just have been learing why. Because of these illnesses and conditions I have both muscle and nerve pain. It had never occurred to me until recently that not all pain is treated equal. We’ll get into why this is so in a later post but suffice it for now to know that I am just learning how to tell the difference and that they are treated different.

Who knew?

Not me. Not me a woman who professed to be an expert about her own pain. Hmmm…

So now I know all this information. What is going on with me, why. what is there that can be done about it. and how?

I was overwhelmed with options. From doing nothing, staying medicated until I will need stronger meds and more of them, participating in lifestyle changes and Physical and Occupational Therapy, alternative treatments, less invasive procedures to out right cervical spine surgery again  And everything in between. I just learned something too about my new Dr Swift, that he is not only a Physiatrist, an anesthesiologist, but he is a DO as well. I have come to expect liking DO’s very much in my latter years. Something that kind of has surprised me. I think I was a snob. There is something about being treated holistically that works for me.

We decided together to order the MRI for the brain, schedule a series of two injections to see if I am a candidate for a procedure called a Cervical Ablation by radio-frequency/ Often referred to as laser ablation. Often also being done for the lumbar spine..

A little homework~

“Radio-frequency waves are electromagnetic  waves which travel at the speed of light, or 186,000 miles per second   (300,000 km/s). Radio-frequency Energy is a type of heat energy that   is created by a special generator at very high or super high frequencies.   With the use of this specialized generator, heat energy is created and  delivered with precision to target nerves that carry pain impulses.   The resulting “lesion”involves a spherical area of tissue destruction  at the tip of the RF needle that can include pain-carrying nerves.”

Why is this procedure done?

Radio-frequency ablation/lesioning  is a procedure used to provide longer term pain relief than that provided  by simple injections or nerve blocks. Many patients who are being considered  for this procedure have already undergone simple injection techniques  like Epidural Steroid Injection, Facet Joint Injection, Sympathetic  Nerve Blocks, or other nerve blocks with pain relief that is less prolonged  than desired. By selectively destroying nerves that carry pain impulses, the painful structure can be effectively denervated and the pain reduced  or eliminated for anywhere from a few months to up to 12 months.

I’ve obviously had the ” already”procedures and the two injections prior to the actual ablation has a two fold purpose. One to tell my doctor if this is a viable procedure for me, having benefit. And two is to for the doctor to find the exact nerve endings involved. This is done under a fluoroscope. I’ll be sedated for the injections as staying as still as possible is paramount. There is still risk even though it’s considered pretty non-invasive. Because of the location of the nerves in the spine and because they are in my case  -near my lungs. Great care is necessary so no temporary or permanent side effects are part of the procedure.

I have read, researched, insisted on material, talked, and prayed about doing this. Is it the right thing for me? I hope so but no one knows that. Not even my doctor. I do know that living as I have been is no longer an option. I don’t mean that in some dramatic fashion. Not al all. Just so you all know in case I happen to write and post on a really low day, no matter how low I may get, how desperate I become, I could never cause any harm to myself. I’m just too much of a believer in not. (Enough said about that)

Finding this doctor who I have actually known about for a year now has been nothing short of life affirming for me. To once again have options is an incredible gift. I should never take for granted that freedom again.

I know the heart ache a person goes through being told one thing to your face by a physician, and then finding his or her actions completely different. I don’t understand how trust can be such a double standard. Why must it be expected that I be trusted explicitly? And my doctor not be held to the same standards in our professional relationship?

If I had my druther, I’d druther trust every health provider that came my way on this journey at face value. And if I had a choice I’d rather choose to be trusted by the simple standard of the honesty of my word and actions alone.

Is that enough for you?

 

tjhelser 2012

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8 thoughts on “Options, Choices, & Druthers

  1. Sweet Toni~so the next step is the two pre-ablation injections? and then potentially the ablation? What a great explanation you gave us. It sounds as though these three things may make great strides toward reducing/eliminating at least a significant portion of your pain. That would be so very awesome. I will continue to pray for you and Dr. Swift and the rest of your team. hugs to you~Kate

  2. Oh Katie girl you never ever cease to touch me deeply. You make my nose start to burn and then my eyelids fill. Thank you dear heart for your questions oncern and mst of all your faithful prayer’s.

    Yes, the next step is the two injections. If I get some reluef albeit very short term than it will prove to be a viable option. The unsurace company demands these steps first before the ablatuib which seens to make some sense. Although I am hard pressed to be convinced that it is for our welfare, the patients that these steps are in place. But so be it.
    Our youngest daughter is an Medical Blilling Insurabnce Specialist and she tells me horrow stories of peole being put through steps for medications before they can get to the one that will help them. It’s a racket she says.

    We are praising God for the choices. Two months ago I was ready to give up, pull the covers over my head and just call it quits. Life, not me.
    Through the most bizarre loops and circles I finally made my way to Dr Swift. But it was not as easy as just calling and making an appointment. there were many hoops. It was weird. I’ll write about iit here on FullCircledMe/ God’s loving hands have much guidnce at work here with me. Amazing incredulous things, but I am seeing them happen and praising God over and over.
    Being lifted up in prayers by so many of loving good people has literally blown my mind away~

    God Bless you Kate, and thank you sweetie for your friendship. I always think of you as one those very first friends. My core.

  3. Toni, you are absolutely marvelous, strong and courageous and a fighter. To say i admire your tenacity and faith is an understatement. I know we will be keeping in touch. Sending energy and love your way always!!!!

    • OMGOSH Cee YOU humble me! Thank you!! I’m so touched that you say this after all that you have been through. It makes my life look like a picnic. Truly. I’m still stunned we live so close, are so close and have not known this until now. The wide web of blogging is a marvelous thing.

      I know there is an email from you waiting for me. I am saving the best for last. Comments fort which I like, but I adore emails from friends like you who absolutely lift me up. Thank you!! Oh gosh, (blushing…)

  4. Pingback: Procedure One | FullCircledMe

  5. Pingback: Still Waiting…..and Waiting….On The Man | Lady Barefoot Baroness

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