This blog is like a dull pencil - Doesn't have a point - Not sure if I'm going to sharpen it

When I started this blog, it was for people from my rug making blog or who watched my youtube videos to keep up with the bizarre "House Episode from hell" show my health has become without having to wade through my more pedestrian or trivial postings on facebook or my home base blog.

Now... I'm not sure that's necessary.

I'm not going to take any drastic steps... I've used this blog address enough on videos at youtube, and I'll continue to copy posts over here which are of consequence, but I have changed things around a bit... I've required openID or a blogger account to leave comments.

I'm just so overwhelmed by all the stimuli and data my nervous system is constantly bombarding me with, its more than I have in me to chug through all the spam comments pr have phantom interactions with nameless faceless correspondents.

Incidentally, I know that often times the pictures or video get chopped off on the right hand side. If there's an easy way to change that, I'd love to, but last time I tried, it was a lot of frustration for no result.

That formatting issue is one of the strongest reasons why this is a secondary, derived blog. Most of what I do these days not only involves the visual arts but is centered on them.

My [in]famous loquacity and copious vocabulary are often beaten down by the vivid torment of daily life, but somehow visual arts are not so easily drive out.

On suffering and art (Letters from the other side of the looking glass)

Its a widely held belief that great suffering creates great art. I had a friend in high school who was brilliant and creative, had every advantage. But this friend wanted to be an artist, and thought that suffering was necessary for it. So this friend's life became the sort of soap opera that you'd see portrayed on a Lifetime movie, or featured in an episode of The Shift.

I thought that was bunk then, and I even more so now that not only have I dedicated most of my adult life to helping those who are suffering, but have spent several months feeling like I had plasma burning paths through large parts of my body.

Here is what I have observed however: While I've lost a great deal of my cognitive abilities and faculties, my creativity has stayed with me, and often provides the only real relief from the onslaught.

I can't speak for any other creative person who is similarly suffering, but for my part, pain has not made me more creative, it has merely taken away my ability to do much else.

Every day I go for a nature walk with Tess (which is a wonderful thing, no small miracle, and the answer to years of prayers) and take pictures or video. The only extent to which pain impairs this is that since I'm often dizzy from it, I can't bend or lie down easily or safely, nor go scrambling around creek banks or rocky outcroppings to get just the right point of view for my photo.

I have taken GIGABYTES of photos and hours of video while this has been going on. The photo in this blog is just one of over a dozen I took this morning of chestnut buds along one of our creeks, and I've been documenting the bud's progress since they first appeared. The place is a very special one for me and Tess... its where a little creek joins a larger one. We spend a lot of time together there.

I rarely have the presence of mind to organize these pix & vid , much less post them... that's more analytical than creative... that has been significantly compromised.

For me, pain has been like an acid bath... its burned away anything not vital or essential. A group I don't necessarily endorse has collected a wide array of sacred texts which speak to this.

For myself, this text from the first chapter of my namesake's first epistle often comes to mind:

³Blessed be the God and Father of our Lord Jesus Christ, who according to His great mercy has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead,

⁴to obtain an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you,

⁵who are protected by the power of God through faith for a salvation ready to be revealed in the last time.

⁶In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials,

⁷so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ;

⁸and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory,

⁹obtaining as the outcome of your faith the salvation of your souls. (NASB)

I think of this passage so much because most of the ways I experience the pain is that of some sort of fire... be it plasma, lava, matter and antimatter combining, etc.

Among my close circle of dear hearts who have been such tireless supporters, constantly being the mirrors by which I am bathed in the light of God's love, we more often remark on these texts:

1Co 10: 13 No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.(ESV)

2Co 12:7 So to keep me from becoming conceited because of the surpassing greatness of the revelations,a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. 8 Three times I pleaded with the Lord about this, that it should leave me. 9 But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.(ESV)

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The wry remark made being "Would that God did not esteem me so highly as to count me worthy and able to bear the blessings of such hardship"

One other remark which bears repeating is one I made the other day in a text message.

"When medicines fail, God does not... the house finch still come to feed outside our window."

You'd be astounded how long it took me to compose this post dear friends... but I've had so much on my heart I wanted to speak about, and since at the moment my dizziness is preventing me from doing much else...

I hope I can issue forth a few more dispatches from the other side of the looking glass, and even more, come around online and see and hear how you all are doing. I so wish my ability to type and read were not so severely attenuated!

Living life on the other side of the looking-glass ... With immense pain, catastrophic osteoporosis, and abnormally high testosterone

Nothing is clear in my life these days... not my thoughts, not the cause of my conditions, nor the future course of it.

After...

Four months

Hours spent in every known scanning device

Litres of blood and urine drawn and tested

Here is what we know: Diddly/squat.

OK, we know a little more than that. As my first x-rays at the walk-in clinic back in early November suggested, I do indeed have osteoporosis. VERY severe osteoporosis. So severe that the doctor wrote for the best and most expensive osteoP drug on the market- Forteo- and insurance approved it right away.

We know one other thing: My testosterone levels are significantly higher than normal... so much so that the doctor asked if I'd been shooting up 'roids and testosterone like an MLB home-run king.

Yeh... right... were I taking additional testosterone, I'd look like sasquatch, and sound like a foghorn.

We don't know what caused the osteoporosis.

Nor do we know why I am still in such inexplicable unbelievable pain on a daily basis.

My surgeon has determined that my gamma nail has set properly tho, so he's signed off on my care... we're looking under all stones to find a doctor who will either treat my pain or help find its cause.

So far that's been difficult, which is why you don't see much of me online, and won't until this is addressed.

The pain- more than the pain meds- leaves me in a fog/haze most of the time. I'm often disoriented in regards to space and time... I trip over things not there, run into things... and remember, before all this, my reflexes were so acute that I did all sorts of crazy things balancing on the bongo board.

Along with the pain is usually very severe muscle spasms. They are primarily in the areas of the body most affected by the osteoporosis but not exclusively.

The pain and spasms started before my femur fractured... so either they and the osteoporosis share a common cause, or they're just comorbid.

I just can't words for the pain... but perhaps this will suffice to convey how severe it is... I often find myself wondering if phantom pain could possibly be worse than what I'm experiencing on a daily basis... I wonder if I'd not have done better to have the leg amputated? Consider that... consider what a lover of the outdoors I am, how vigorous and vital I am, that the pain is such that amputation seems like the greener grass.

There are lots of good things happening in life... most especially that Tess and I have spent more time outside together in the last 5 weeks than in the previous 5 years... its an answer to many prayers.

Thanks for the comments and caring and praying... I so wish I were able to be online interacting with you, but interacting with this maelstrom which is working its way through my body takes all I've got... and then some...

The photo is one I took of my reflection in the creek which runs along one side of our property... seemed like a more apropos image than the wheel chair one. I did some FX to it... maybe I'll do a post about them someday...

Health (or lack thereof) update / Butterfly (dog) Kisses video

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I'm starting to think that if I wait to talk about what's going on until I understand it... it might be 2020.

I have been diagnosed with osteoporosis, but why it happened and what to do about it are still pending.

The sad situation which led to my first "Word Picture" reached its conclusion... I have more such pictures to post, but I owe someone else one first.

Pain continues to run amok... I'm still taking great pictures, delighting in the company of friends, family, the pups, but... Every time I have a thought worth posting, the pain and exhaustion have washed it away by the time the computer boots up.

So I'm afraid I'm still AWOL. As before, if you're in the area or have other means to contact me, that's fine... I can interact with people and take visitors, I just can't hold or express a coherent thought.

I don't have words... but I have a picture

There's been plenty going on with my health and with my family, but dealing with all of it- good, bad and twilight-zone bizarre- has me pretty beyond the ability to find or use words at the moment.

This picture is a "low res" sample version of one I made to send with my mother when she went to be with the dying dear person.

She left Weds.

I printed a 5x7 and 8x10 of this for my mother to give to... whom ever, along with some nice family pictures for her to look at, show off, etc., so she'd have something to think and talk about other than the sad situation.

I'm pleased with how the prints came out... there's much more I could do in this direction, and I plan to, but... again, having trouble finding the right words to describe it.

The shelf our TV and VCR & DVR is on cracked, so I've to tend to that now.

Endocrinologist 1/27/10 & another reason I may not be online much

Yesterday's visit to the endocrinologist went very well... much as I had hoped and expected. Tess and I were struck by how all the things we discussed and tests he ordered were the things we'd both been wanting to explore since...oh...Nov 10th or so (a week BEFORE my leg went out, for those of you keeping track.)

So, got those and one more scan- a Dexa scan- then we reconvene in three weeks.

(Incidentally, in the course of this, the calcium levels came up / out- by themselves, they're good... as expected... .)

Next Tuesday, I see my orthopedic surgeon to explore resumption of full weight bearing and the details of my future course of activity, what sort of pain levels should persist, how long, etc.

So I'll be plenty busy dealing with all these doctors' visits... almost feel like I need a medical secretary just to keep track of it all!

I have started making inquiries to gain the information I'll need such that once we know what's going on with my body, WE can make a good decision about future vocational / educational issues. (Radiology was suggested by a well informed person close to the situation, and has much to commend it.)

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However...

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Another event happened yesterday which will doubtless affect how much time I spend online... where I'll be when, etc... for some time to come.

If you know us well, you know one of my family's hometowns is a bit to the north of Indy. A situation has arisen with the health of a person there which is quite alarming and has hit all concerned quite hard. As it plays out, it will take more of the family's time, attention, focus, energy, emotional resources.

I believe that's just enough information for those who know us well enough to know what I'm talking about.

That's all I care to say on the matter in this ueber-public place.

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General trajectory of pain, range of motion, etc is good. If I overdo, my body tells me, so... live and learn.

Tess and I are getting outside together more... she shot a couple of good videos of me which I hope to upload soon under the title "Not disabled- logistically challenged."

Good thoughts and wishes to/for all out there!

AVN/osteonecrosis- NEVERMIND

NOT avascular necrosis of the shoulder. So next stop... endocrinologist next Weds!

When first heard avn from oncologist, knew I needed to get a ruling from my orthopedic surgeon.

Perhaps there is some such going on, but if so, its not shown by the MRI of my humerus, and my orthoP took flat film x-rays to confirm.

Talked about general situation... he's pretty confident that if there's anything to be found, the endocrinologist will find it, and that's what I've suspected from the start, so... .

In the mean time, pain has "plateaued-down" at pre-Nov 17th level. Mind you, that pain were still the worst I've had in my life to date, but it means I have some time each day where the fog of pain recedes enough to think.

I've been outside doing the sort of exercise and productive puttering allowed by my state of healing for three days in a row. It feels very good. Will doubtless do so again today.

First though, I need to go back through my back-posts here and make sure I spelled my doctor's name right, etc. I took a general thank-you in to the doctor's office yesterday, and I was in a bit of a fog when I wrote it & MASSIVELY mangled his name. Fortunately Tess was clear headed then, so between the two of us... *grin*

Living life well & Another good link on osteonecrosis

This morning my mother, wife, and I went for a "walk" down the street. (Those who know us well know that we live in one of the hillier parts of Indy, there's no level land on our street.) We went down across the bridge, then up a slight grade to the northern terminus of our street. Using both arms and lower legs, was able to do without assistance. It felt good physically, and even more so emotionally. Enjoying time with dear people outside is one of the things which makes me tick, so doing that together was very beneficial and rich with symbolism and poignancy.

Came across a GREAT overview of osteonecrosis (avascular necrosis, aseptic necrosis) on Google Health. It is here.

No new developments... don't expect there to be until I see the orthopedic surgeon Friday. It has been over a week since oncologist took blood and urine tests looking for monoclonal antibodies in the seemingly never ending quest for cancer, and haven't heard anything, so... .

While generally I've been pleased at how wonderfully attentive and aggressive my doctors have been, and I've tended to keep editorial / societal commentary to a minimum in posts like this which start out at my "general public" blog named after Tess' favorite sonnet, allow me a little rant here about our society's obsession with cancer.

The "logic" seems to be...

• There's something wrong
• We can't find a reason
• It must be cancer!

While I'm very knowledgeable about my own body, and pretty well versed in matters medical, I'm not a doctor. Yet I've never thought I had cancer because I've never seen nor been shown any reasons or evidence to support it. There's no history of it in my family, I've not been working in a chemical plant in the third world, etc.

So at this point, I find myself a bit tired of this seemingly never ending quest for something which a biopsy, multiple scans of different types, and so forth, has not shown any evidence for. How long can an argument from silence be maintained?

Its not as if this endless pursuit of nothing has no cost/consequences either... getting anywhere for anything is a major logistical operation for the family and for me. While my pain has been decreasing and range of motion and ability increasing, my energy levels are pretty low.

GENUG!

I have a problem in my right humerus- I'll be seeing my orthopedic surgeon about that Friday. Good- if there's something to be done about it, he's the one to do it. He did a cracker jack job on my femur!

I'll be seeing an endocrinologist who specializes in disorders affecting the skeleton next week... Good! We've not pursued that angle yet, and I've long suspected I'd wind up working with someone like that to finally determine the etiology of these problems with my bones.

I see reason for and benefit to these activities, and am quite looking forwards to them.

Another week, another doctor's visit, scan, etc - Kudos this week to the radiology department of Community North Hospital, Indianapolis & Dr. Logie

First off- I again want to thank everyone online for their patience, understanding, and forbearance while I'm off line. I understand what's going on with me... I've seen it in my dear Tess for years... pain has a way of short circuiting the brain.

So...

Yes, I had the follow up with the oncologist on Tuesday. It went entirely as expected. He referred me to an endocrinologist who specializes in disorders affecting the bones. I see that doctor on the 27th.

Out of due dilligence, he also ordered two follow up scans- an MRI on my right humerus bone and another full body bone density scan.

I had the MRI yesterday, and I gotta tell ya... if we made terrorist suspects go through this sort of thing, the ACLU would be raising holy havoc! It lasted two hours. If you've never had an MRI, its like being locked inside a really narrow cement mixer while someone bangs on it with a hammer.

Kudos and thanks to the Radiology Department at Community North Hospital, Indianapolis. My techs were Brad and Ricky, and they were tops! Brad even remembered me from my MRI in December. They were proficient, attentive, compassionate... and not just to me, but to my mother and Tess.

The attending radiology doctor did well by us too, but I didn't catch his name. There was some uncertainty about where to focus the scan, and he was able to look at my previous scans and the doctor's orders so that they were able to get the scans most relevant and useful.

We've been told to expect the results back by tomorrow, which is commendable as well.

Everyone else we interacted with there- from the valets to the greeters, were good as well.

So... why did I get that scan? I can only speculate. I know there were irregularities in previous scans all over my body. That they focused on this spot must be that it was especially troubling.

Gotta give props to my oncologist / hematologist - Dr. Keith Logie - He ordered the scans himself instead of punting it over to the orthopedic surgeon.

He also answered some other questions I had which he could well have punted on.

His office staff were all great as well... I hope I never have to see them again, but anyone who does have need would be blessed indeed to have such compassionate and capable people as those at the Central Indiana Cancer Center- Fishers.

Next stop then the endocrinologist on the 27th... and down the line, probably an episode on Mystery Diagnosis or House. (Can't take credit for either joke- friends suggested them.)

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Other developments with me and Tess

• Pain levels slowly ebbing,
• Range of motion continues to increase.
• Based on Dr. Logie's advice though, I am going to take the heavy lifting stuff easy- after I shoveled snow from my wheel chair last week, rib cage with "hot spots" got sore, so 20 pound limit.
• Tess is over her chicken pox.
• I told her she'd better not come down with scurvy or leprosy before my next doctor's visit!

Needle hunting postponed till Tuesday, shoveled snow today (in my wheelchair)

Couldn't make it to the oncologist / hematologist yesterday due to the weather, so. Rescheduled it to Tuesday morning. I hope Tess' pox will have cleared up enough to come with me then. I don't know what else they could scan or test though, I've had so many... every square CM of my body's been scanned at least 3 times by three different methods. The areas of particular concern have been scanned four or five times. They must have drawn out a pint or two of blood to test for cancer markers in the hospital too, so I don't know what else there is to be done to find the cause of this, but I sure would like to get it figured out!

Did get out in the snow in my wheel chair yesterday and today. Even shoveled off 1/3 of the driveway today. Tess shot video, she came out with me, but too worn out now to post.

The Indiana Orthopeadic Center & Dr. Sieber have done wonders for me - Post-op visit and general kudos

I had my post-operative visit with my orthopedic surgeon yesterday. It was a long but very pleasant visit, as indeed they all have been. The folks at the Indiana Orthopeedic Center have all been wonderful. I've been trying to take down names of people so I can write specific letters of commendation and thank-yous, but if you're somebody who works there, and you've worked with the tall black haired guy who's always working on a rug, I'm talking about you!

( We stopped at the dollar store after the visit and I bought two packs of thank-you cards, but I think I'm going to need more.)

The surgeon who worked such wonders for me is Dr. Jon Sieber He placed a 14 inch by 1/4th inch titanium rod in my femur. Its quite impressive. The ends of this device which anchor in my bone have heads like a dry wall anchor. I wish I'd asked him the precise name of the device, or for permission to take a picture of my x-ray, etc.

I went there on crutches and the receptionist smiled and said "This is a surprise"

When I asked her why she explained that it was surprising and nice to see me not in a wheel chair.

Of course they took x-rays... many, since I'm as lengthy of stature as I am of speech. The nurse was very pleasant too, and she surprised me when she said "I wish all my patients were as cooperative & understanding as you." Now, I don't think of myself as a particularly patient person, nor especially nice. I do at least my share of griping, but not at people who are helping heal me! I heard similar comments in the hospital. I'm glad my health care team appreciated my attitude, but I don't get why people would grouse at them for doing their jobs when their job is fixing you! Its not like they wake up in the morning and say "Oh goody, I get to torture that freak who's always working on the rugs." Sure, some of the x-ray positions hurt, the IV and CO2 meter in the hospital were hassles but... anyway, as above, that's why I make it a point to write thank-yous... they don't get NEARLY enough appreciation!

As for my situation, the etiology remains a mystery, but the doctor is pleased with the progress of my healing and my activity.

I'll be on crutches and off driving for a month. He wants me to say at partial load bearing the next two weeks, and work towards full load bearing and being off crutches by the time I see him in a month.

Tomorrow I see the oncologist- though I have no idea why...

• the biopsy of my femur marrow came back totally clean,
• had blood tests for all possible cancer markers, and they were all clean
• Every square centimeter of my body has been scanned at least once, some as many as half a dozen times by at least two different methods (x-ray, MRI, CT, ultrasound, & dye contast bone density.)

I believe there is still some concern about osteopenia or osteoporosis. Cancer was explored as a possible etiology and has been ruled out by the extensive battery of tests. So perhaps the oncologist will want to explore other disorders which though not cancer could still be responsible for my bone having disintegrated and broken?

Tess seems to be done breaking out with new pox, and my mother bounced back from her fever/stomach problems.

Thanks for all the love, prayers, concern, support.

My mother has stomach flu / Crutching & PT going well

Why not... my mother seems to have stomach flu- high fever, chills, vomiting...

So I'm headed out presently with my brother to do some emergency shopping- gatorade etc. I'll be on my crutches and my brother will follow after with a cart.

There's no doubt now that Tess has chicken pox.

Its all been such a blur... walking, not walking, cancer, not cancer...?!

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It's all been such a blur...

I hardly know what to say or where to begin... This morning is the first time in close to a month my wits were with me enough to do a little bit of photo fun. I have a lot of catching up to do at Multiply and Facebook... bear with me please!

If you've written a post you'd like me to read, please drop me a personal mail... there's just no way I can go back through all the old posts both places any time soon. I have two months of my OWN life to catch up with, and (see below) we still don't know what's happening to me, nor why.

Thanks for all the love and support and comments... my ghost writer related the concern.

I've not even read back through what he posted yet, so for today, just a few facts / the timeline:

• Thursday Dec 17th- Spent most of the day in CT scans and bone density scan (with dye contrast, whole body)
• Before we'd even gotten our coats off, the doctor's office was calling with an appointment for the next day... whoa yeh... this is big! Scans don't usually even get to the docs that quickly unless techs and docs running them see a major problem.
• Friday Dec 18th- Orthopedic surgeon informs that my right femur is cracked through just below the ball joint, and that the bone density scan also revealed several other "hot spots" on ribs and orbital along with a general break down of the bone density several other places including the top part of my right femur which raised (increased?) cancer concern.
• Yeh- Pretty freaky, since I'd not had any fall or trauma to the bone before onset of pain.
• Emergency surgery scheduled first thing next morning at Community Hospital North.
• In the fullness of time, I will have a lot to say about the facility and staff there- in a word: EXEMPLARY.
• Saturday Dec 19th- A 1/4 in rod ("rebar") inserted into my right femur. Relatively new device designed to be able to take the place of degraded bone in load bearing. Hope to get more details about the device and procedure when I next see my doc.
• Samples taken during surgery for biopsy to investigate cancer concerns.
• Sunday Dec 20th- First consult with oncologist, abdomen CT scan ordered.
• Monday Dec 21st- the Day of Death Different oncologist informs us that CT scan revealed two 14mm masses in one of my kidneys. Speaking in general terms, suggests that the bone anomalies plus masses in kidney indicative of stage 4 cancer, either renal or bone. Will not answer questions about treatments. Biopsy had not been examined yet. Orders ultrasound of several areas of interest in my abdomen and CT of head.
• I'm nowhere close to being able to express what it was like for me, Tess, my family and friends for me/us to live with what amounted to a provisional death sentence for a day. When I speak of that, it will be carefully and clearly. Over all, the quality of care and the people at Community North were the highest I've ever seen, and by all accounts this doctor is as sharp as they come... I'm not going to lash out at, slander, or attack him. In fact, I'll be seeing him again in a week.
• Tuesday Dec 22- Ultrasound indicated that masses were benign cysts, not tumors. No evidence of cancer in any of the other scans.
• Discharged later that day.
• Thursday Dec 24- Biopsy from bone reveals NO evidence of cancer.

Next week

• Tuesday Jan 5th - Follow up with orthopedic surgeon. Staples removed (I hope) and we start all over from scratch figuring out why my bone broke, why others are weakened, etc.
• Thursday Jan 7th - Follow up with oncologist... I have no idea why.

Through it all, my friends and family along with the nurses and all other staff at Community North were EXEMPLARY... I have so many stories to tell, praises to sing... but this is all I'm up to now.

I will try to go back and read your comments and questions posted while I was out, but if you are eager to get them answered, posting them in response to this post will probably result in a quicker response.

FACEBOOK FOLK: Sorry, not ready to dive in there. This is the first day since early December I've been able to focus on a computer screen even this long, and this is pushing it.

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Mini tutorials

Paint.NET and PhotoFiltre

Its all been such a blur photo

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I used Paint.NET to create this perfectly evocative image. A picture really is worth 1,000 words... this one tells the story of what my life has been like for at least the last month better than I could ever hope to.

This is the original photo, FYI

The image below shows how

I created this using Paint.NET and the version #

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As for the version with the "?" and "!" I used the free version of Photofiltre. The text is Tahoma, the angles are 60, 120, -60, -120, outer bevel, default settings.

Click on the image below to see the full sized version, if it doesn't display automatically.

When I can do something with Photofiltre, I do. It isn't as powerful as paint.net, doesn't have layers, but that's precisely why its better for a "quick and dirty" mod like adding the punctuation to the picture.

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I have to again say what a blessing all my friends and family and the doctors and nurses have been... and you too. I could feel your love and prayers.

This is a pretty freaky situation, and its not over yet, but no one who's ever gone through such has received better care nor more love!

Comments and Graphics - Layouts - Photobucket