Crowder, Victory

Thursday, November 16, 2017

The When and the Why....and the How

There is a lot medically going on with me.  I got an MRI of my spine report and it made my rheumatologist groan.  It's bad.  Really bad.

And there is also the fact that my trial on Orencia was a complete fail.  We are now down to one drug that I have not tried.  The doctor has not wanted to try it before because when I was on a similar TNF Blocker I had an  infected heart valve (endocarditis) and also pneumonia.  But Remicade has always piqued my interest because it seems that it has helped so many of my friends with RA. It is an infusion which means I will be heading back the Infusion Center in the Cancer Building at ORMC; back to the care and concern of the lovely nurses who work there.  It carries a lot of risk....not only for infection but also for allergic reactions. (and I am a veteran of allergic reactions).

I love my rheumatologist.  He is not afraid to go "boldly where no man has gone before" in administering drugs that other doctors have refused to prescribe out of fear of infection.  He knows that my life is not worth a hill of beans with the degree of disability and pain that I have. He knows that I'm game for a risk...and he is too. 

When he saw my MRI of my C-spine yesterday he said "you have a LOT of pathology going on here." and proceeded to read the list and explain it to me.  Stenosis. degenerative disk disease (herniations), osteophytes (bony growths),  slippage of the vertebra, narrowing of foraminal space (the facets which are openings in the bone where nerves travel through to the body.) muscle spasms due to straightening of the spine, nerve roots being cut off, and congenital fusions where the vertebra are solidifying and merging with other nearby vertebra. And there was more but  I don't recall it all. 

Doctor B then told me about a world famous spinal surgeon (neurosurgen) who only takes on  the most difficult and hopeless cases....and he felt that I would qualify.  But it's about a 3 hour drive from insurance will likely be a problem.  And then I have the whole question about "why???"  Why undergo what would probably mean a series of massive surgeries when this Rheumatic Disease is destroying me from the inside out?  I have no hope of being pain free or gaining any real mobility again.  Would it make the difference between being in an electric wheelchair and a nursing home bed?  I suppose if it was a success it might.  But I've had 6 lumbar surgeries already and  I still have a lot of pain and "issues" there.... Is surgery ever truly a cure for pain? Maybe short term....but after a while pain returns.

Someone said that this MRI report is a huge challenge to faith.  I don't feel that way. God has his purposes and I am not going to be the one to challenge them.  He made this body. He can break this body.  I am his.  And that holds no fear for me....because I know he is good.  He has blessed me of late, with a new revelation of himself.  And it gives me great joy.  I was reading this morning the writing of an early church Father, Fenelon.  and he said that devotion is doing all of the work God gives us to do....with Love.  And because God IS Love it means using God's own power to accomplish God's own will.  He bids us go...and then strengthens our legs so that we can do his bidding.  He does not demand of me anything that he will not also give me strength for.  I don't understand his plan.  I don't know why he would gift me and then remove me from utilizing those gifts. Maybe those are my crowns that I will "cast at his feet" ....maybe my pain is an offering.
There really doesn't have to be much more of an explanation than that.

Saturday, November 11, 2017

Diamonds in the Dust

Diamonds in the Dust: 366 Sparkling DevotionsDiamonds in the Dust: 366 Sparkling Devotions by Joni Eareckson Tada

Although the "end date" in Goodreads is for today, Nov. 11th, in truth I've been reading this book online for the past year through as one of their featured devotions and will finish on the New Year. I have owned and sadly, given away this book because now reading it again, I have been blown away by the depths of Joni's theology and perceptiveness to the spiritual realms. Joni truly is seated with God in the heavenlies although right now she is seated within the confines of a broken body and a wheelchair. Although currently I'm only in my wheelchair part time, in the recent past I've spent some years there myself. And chronic/mind blowing pain is my daily bread also. Joni's thoughts on suffering, while cogent and profound--are surpassed by her thoughts on God; his glory, his love for us and ours for him, and what it means to be a foreigner in a foreign land. These thoughts are the thoughts of someone who spends a lot of time in the presence of God in meditation and also in the challenges of a difficult life.

Although the book is simple to read, the ideas it contains are deep and wide. I would place this book among my top two favorite devotionals...(the other being My Utmost for His Highest by Oswald Chambers). My year with Joni is drawing to a close and I will move on to another devotional, but I'm sure that I will come back again to this lovely tree planted by the streams of water that shall never run dry and its flower will not fade.

View all my reviews

Monday, November 6, 2017

My Amazon Review for RA Unmasked

Occasionally there appears a book that you know is going to change things for the better. This book, by Kelly O’Neill Young, has the potential for rocking old, dusty misconceptions about RA (Rheumatoid Arthritis)—Misinformation, old wives’ tales and current naturopathic misguidance—have left some sufferers of this very serious disease, feeling abandoned, frustrated and hopeless. The first point to understand is that RA is NOT just “a form of arthritis”—it cannot be cured by taking supplements or eating certain foods. It is an insidious, horribly destructive, often fatal disease which is much larger than was previously known. The “arthritis” …featuring destructive, painful deformity to the joints in the body, including the spine…is only one of the symptoms of this disease, which Ms. Young suggests be renamed “Rheumatoid Disease”( RD.)
The author laid out her arguments logically and clearly…but her feelings and passionate commitment to promulgating these understandings were quite obvious. Kelly has suffered mightily at the hands of this disease, as have many of us, her online community and followers of her blog “RAWarrior,” and has met with the constant frustration of misinformation and bias held not only by the “ignorant” but also by doctors who have been uneducated regarding the true facts of this disease and who have either not learned about or have ignored the fact that RD is often lethal and this has been under-reported and misinterpreted.
Kelly pulled out many years of medical journals, studies, and writings to argue her position and it was clear that there is no paucity of proof. It is simply that no one has ever researched it and laid it all out clearly before. I pray that her voice would be heard, her recommendations be followed and that this info would get into the hands of those who are in the position of making a difference for the millions of sufferers. Thank you Ms Young for your efforts on the behalf those of us who needed a voice in the wilderness.

Now it's Personal

With the release of the book “RA Unmasked” by Kelly Young (, this has been a red-letter week for a group of people who have been the objects of neglect and misunderstanding.  Sufferers of “RA- Rheumatoid Arthritis” have been cast as having simply the same wear and tear arthritis Aunt Tilly had and our constant illness and our desperate attempts to make somebody, anybody to understand, are looked on as hypochondriasis.  We are sick in multiple ways…surely this is not just arthritis but a much more insidious demon, debilitating and causing us harm and agonizing pain.

Because I’ve followed Kelly Young’s blog “RA Warrior” for years, I understood that RA (which now we hope will be changed to “RD, Rheumatoid Disease”) is a systemic, serious, debilitating and often fatal disease… But knowing that didn’t make that as real to me as it was to read one after another description of “Extra Articular” (conditions which involve symptoms and destruction far in excess of “mere” arthritis) –and to say as I read chapter after chapter: “I have that.  I have that and that one too.” It was sobering to read that someone sporting four other such conditions/diseases is at a great risk of not surviving a full-length life…and I had something like 10 of these extra-articulars.  Suddenly, all the confusion of my life and extensive medical history was congealed into one morass of destruction due to RD…not some kind of random, wacky curse that God had arranged for me; not a product of my imagination; not hypochondriasis.   I have a disease.  And it is the one that killed my mom just a year ago. 

This has become personal.  This book has sobered me and made me realize this is no battle for the faint of heart.  I am at the point where I do not want to see yet another doctor.  I already have many specialists and have had numerous, extensive surgeries.  I need a cure.  I need a miracle, and it is only by correcting popular misconception—which exist even among highly trained medical professionals—that we will begin to see the research necessary to someday come to the place where there are viable, effective treatments. 
Kelly Young has made it personal as well.  She is raising 5 children despite great suffering as a result of RD…she has researched, spent endless hours at her computer, talked to thousands of people and she is making a difference.  Kelly will, when God calls her to Heaven (hopefully at a ripe old age), have positively affected the lives of millions of people.  I have purchased several of her book, one of which will go into the hands of my rheumatologist.  Thank you, Kelly for validating the things we suspected to be true and for shining a light onto ways that we can make a difference.