Showing posts with label Hope. Show all posts
Showing posts with label Hope. Show all posts

Tuesday, March 20, 2012

the thing with feathers

I had a heck of a time using Blogger last night and hope the issues have been resolved.

Other hopes for today?  That GOOG will shoot up to 700 or so.  That URBN will at least reach that point where I can comfortably bail.  That Marmy Fluffy Butt's left eye ceases to seep, so she can have some relief from her allergies.  That I successfully capture on video the behavior that inspired Dobby the Runt's nickname of "Butt Boy." [And that the video be appropriate for a G-audience.]  That Fred stop racing toward the drawbridge  in his sleep [He keeps hearing knocks and "yoohoo"s in his dreams.  Twice already this morning, he's gone flying by, knees pumping, chest out, yelling, "I'm coming, I'm coming!" My reassurances that there's been nary a knock and not even one "yoohoo," were met with drowsy disbelief.]

Let's see, what else?  I hope that My Hero, Ms. Hannah, gets to go home from the hospital today, after her successful rotationplasty last Friday. Her Mom summed things up yesterday this way, on her CaringBridge site:

I could not hold back my tears of joy as I watched Hannah--my "miracle baby"--do her physical therapy session. She did almost everything on her own. She only had help from physical therapist for balance. Hannah did not flinch or pout or complain or cry. She said it didn't hurt at all and was no big deal. She stood up on her own for a 5-count then sat back down and did that 5 times in a row. Every day I am more amazed by this kid. I'm so proud of her!

I know there are more hopes percolating inside my head and heart.  Dare I give them voice?

I hope that the two-inch nugget glimpsed under the bed (from whence I was retrieving my grabber -- using my cane!) is not what I think it is.  This is the Poo-Free Zone of The Manor.

I hope that federal officials can charge George Zimmerman in the murder of Trayvon Martin, as well as investigate any malfeasance on the part of the Sanford police.  There are several reports that seem credible of officers attempting to "mold" witness statements into a form friendly to Zimmerman's twisted version of the crime.

I hope that yesterday's despair doesn't taint today's progress.  The return of fever, sweats, and that particular pain of the bone infection really got to me, for some reason.  As if another couple of far-from-routine surgeries, $250,000+ in hospital and LTAC bills, intravenous vanco and Cubicin, oral Bactrim, and the wound vac experience were not enough to make me realize that I'm in the midst of another failed attempt at a cure, it took my inability to pop the top off of a can of Progresso soup to have it all sink in.  [The soup?  Tortilla y pollo, doctored for more heat.]



Other fantasies?  That I could spend this Persian New Year with  my former best friend, the Wild Iranian Lesbian, admiring the beautiful table, the flowering hyacinth, the optimistic gold fish.  My hope, of course, is for her year to be a wonderful trip around the sun.


I dare to hope that the Ellerbecks have a measure of comfort, somehow, today.  


I wish Captain Haddock would just go ahead and surface in the moat, in his jaunty little pink submarine -- the threat of a Domestic Inspection is so much worse than the actual wielding of The White Glove.  [Fred found The Castafiore waxing the steps of Buonarroti's Spiral Staircase again, and spritzing the Old Masters with household cleaner laced with ammonia.]


Given what I can glimpse outside this casement window, newly installed in the upgraded Computer Turret, I hope to "play in the dirt again" sometime very soon, if not this day.  The sky is blue and so is the sea... Drat. Why is I Am a Child playing in my head? I fear it is the impact of thinking about the Trayvon Martin travesty down in Florida.

At least my brain picked the Buffalo Springfield version.



Uploaded by  on Jan 21, 2011

I hope, as does everyone in vicinity to moi, that I can overcome my fear of falling and take a shower today, the first since the morning of January 23, 2012.  Somewhere in this blog, in another of my awesomely introspective and well-organized posts, I detail how to maintain a pristine state without benefit of getting in the bathtub.  It's not so easy these days, and more than anything, I actually long for the feel of water on my skin.  [In my case, due to CRPS, running water feels an attack of tiny needle sticks -- tolerable, but sometimes just barely tolerable.]  My legs, especially, need a soak.

I hope, too, that I can pull off a shower without that being my pinnacle achievement for the day!

Because I also crave and want and expect and yearn for... a day put to good use.  You know, when you don't just fill the pets' bowls with food, but take careful time to sanitize the bowls first.  Did you know that eating from plastic bowls can cause pimples to sprout around a cat's mouth?  I didn't think so!  Only one of our bowls is plastic, and we use it because Marmy Fluffy Butt (aka I-choose-to-leave-my-poo-beside-the-litter-box-for-your-maximum-pleasure) will not eat out of anything else.  That reminds me.  I absolutely pine, fancy, and crave the services of an animal psychologist.

This day, cast useful, should include other bits of spot-cleaning.  The disgusting coffee apparatus that Fred uses -- and that Bianca's frequent overnighter, Sven Feingold, adores -- hasn't been washed since... well, since I last had a shower!  In between hospitalizations, while I was insane with fever and dehydration, I made several inspired online purchases, the best of which proved to be a new Bodum French press, so I am brewing my coffee separate from Fred, Bianca (and Sven).  I tell you, it was like Christmas (finally!) for a few days, in spite of the definite Lenten attitude exhibited by our UPS driver.  I had no recollection of my purchases but fortunately, some innate good sense prevailed and I only ordered household items according to an apparent "upgrade" theme.  Frilly stuff like a new dish drainer, and magnetized tools (miniature grabbers, really).  Even the more wasteful orders are not so wasteful, after all.  Not if you squint and stare into the direct sun.  For instance, even though we now have enough bonito flakes to make dashi for all of Japan, I have faith that my Buddy the Freakishly Large Kitten will eat his way through them by the end of the year.

How did the shelter staff not know that he was a Maine Coon?!

Other expectations, faith, and fancies for today?  That we can figure out the idiosyncrasies of this new wheelchair before hosting the "Wheelchair Tech" tomorrow.  It seems like such a small matter, hardly worth someone making the long journey from Tête de Herge's only Full Service Gimp Supply Store.  Still, it is not a good thing to suddenly lose power in the midst of crossing the street.  There's also the whiplash factor!  Fred, stubbornly sticking to scientific method, has debunked each of my theses about the cause of this behavior, citing "coincidence" as the underpinning for my observations.  I much desire equanimity should we tackle the problem again this afternoon.

I'd positively love to do some cooking and baking, but cannot wield a knife.  That's not true.  I just cannot safely wield a knife or expect that my knife skills won't result in personal tragedy.  Hence, the adventures with soup cans and many microwave meals.  Fred is a great cook but he's kind of in recovery right now, himself, you know.  Bianca?  Puh-leeze!  Sven can concoct some amazing comfort food dishes but I can feel my blood vessels begin to clog after the first few bites.  And it turns out that asking for help from the genetically indentured Domestic Staff can result in charges of Abuse of Power.  Who knew?  Damn those corporate flow charts.

Well, if I don't end this, and then finish revising the post that Blogger was blocking last night, I'll never get to my extensive Wish List.  Hmm, how to close, how to close?

As if you weren't expecting it!

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

-- Emily Dickinson

Wednesday, February 3, 2010

I cannot help it, I am full of hope...

One of the numerous feeds to which I subscribe channels news about CRPS -- that's not likely a shock to you!

What probably is news is that whenever I prepare to click on the summarizing email, my lungs, my mind, my heart, all fill with hope. Once I see what news awaits, that hope normally fizzles and fades, losing all its precious buoyancy.

I have an appointment with Dr. PainDude in a little under two hours. It has been a long while since I showed up with papers in hand, with hope. I just printed the following article, and almost miss the days of toner smell, mimeograph fumes. Today, the paper gives nothing away.

It blurs my eyes, these words: The team at the Pain Research Institute discovered that a single, low dose infusion of intravenous immunoglobin (IVIG) significantly reduced pain in just under 50 per cent of patients treated, with few adverse effects. The pain relief lasted on average 5 weeks.

O Christ, O God Almighty: Let it be true.

The text in its entirety below. I will do further research this afternoon.


Scientists at the University of Liverpool have discovered that treating the immune system of patients with Complex Regional Pain Syndrome (CPRS) leads to a significant reduction in pain.

CRPS is an unexplained chronic pain condition that usually develops after an injury or trauma to a limb, and continues after the injury has healed. CPRS I - formerly called Reflex Sympathetic Dystrophy - can arise after any type of injury. CRPS II, previously called causalgia (a term coined in the American Civil War when it was first diagnosed), follows partial damage to a nerve. In some cases the pain can be so severe that patients request amputation, only to find that the pain returns in the stump.

CRPS pain can improve within one year after the injury, but if it is still unchanged after 12 months (longstanding CRPS), then it will often not improve at all. Longstanding CRPS affects about 1 in 5,000 people in the UK.

The team at the Pain Research Institute discovered that a single, low dose infusion of intravenous immunoglobin (IVIG) significantly reduced pain in just under 50 per cent of patients treated, with few adverse effects. The pain relief lasted on average 5 weeks. The results of this study may change the future treatment of patients with CRPS, and have an impact on research in other severe chronic pain areas. Intravenous immunoglobulin treatment for CRPS is currently not available on the NHS.

Although the cause of the syndrome is unknown, precipitating factors include injury or damage to the body's tissue. Changes in the way nerves send messages to the brain about pain may occur at the injury site. These changes may then lead to more changes in the nerves of the spinal chord and brain. All these changes are thought to play a role in causing and prolonging the condition. Conventional pain drugs either don't work, or have considerable side effects.

Dr Goebel, Senior Lecturer in Pain Medicine, explains: "In CRPS, the real effect of this treatment in clinic may turn out to be even greater than what we have already seen, because IVIG can be given in higher doses, and repeated treatment may have additional effects. IVIG is normally repeated every four weeks and we are working to develop ways which would allow patients to administer the treatment in their own home."

"The discovery is expected to have a real impact on the treatment of other unexplained chronic pain conditions; if one pain condition can be effectively treated with an immune drug, then it is possible that other types will also respond."

The research is published in the journal Annals of Internal Medicine.

Notes: [....]
The research was carried out in collaboration with University College London.
Research activities on the role of the immune system in chronic pain are the focus of the newly created 'Centre for Immune Studies in Pain' (CISP) at the University of Liverpool, led by Dr. Goebel. For further details visit www.liv.ac.ukpricisp. Support for these and other research activities aimed at relieving chronic pain comes from the Pain Relief Foundation in Liverpool.

Source:
Sarah Stamper
University of Liverpool



Aha! A better article,* of course, is available at RSDSA.org -- from The Annals of Internal Medicine (cutting to the chase, "results... limitation... conclusion"):



Results: 13 eligible participants were randomly assigned between
November 2005 and May 2008; 12 completed the trial. The average
pain intensity was 1.55 units lower after IVIG treatment than
after saline (95% CI, 1.29 to 1.82; P 0.001). In 3 patients, pain
intensity after IVIG was less than after saline by 50% or more. No
serious adverse reactions were reported.

Limitation: The trial was small, and recruitment bias and chance
variation could have influenced results and their interpretation.

Conclusion: IVIG, 0.5 g/kg, can reduce pain in refractory CRPS.
Studies are required to determine the best immunoglobulin dose,
the duration of effect, and when repeated treatments are needed.

*yes, it is a bit of cold water... damn it.

**************************************************************************************************
later... in an email to my sister-in-law, this brief but exciting episode was summarized thusly:

i got all excited this morning by a news report that i.v. immunoglobulin had been found to "significantly" reduce pain in CRPS. an hour later, i found out that the big study had all of 13 people in it, one of whom dropped out. "just under 50%" of the participants had positive results. let's see. putting on my thinking cap. half of 12, six. okay, "just under" must mean... FIVE. then hank did his "statistics" speech: there must be at least a cohort of 30 to be statistically relevant... sometimes, i wish he would keep all that book learnin' to himself. i should have known that when something sounds too good to be true, it probably is.

**************************************************************************************************


Friday, 5 February 2010:

Further tidbits keep popping up. An editorial accompanied the published research. It sought to temper impulsive enthusiasm as a response to this study, emphasizing caution and the tremendous need for more work. In case you've not kept up with the exciting times in CRPS/RSD research, the authors give a quick gloss at the beginning of their editorial -- and I am resolved to place my hope in that steady progress. It's just that when severe chronic pain and disability roll on unabated for eight years? Well, it can be difficult to be positive. So I tend to grab and latch on to any research that makes sense. I don't mean to mislead anyone by these occasional bursts of unwarranted optimism; Please pardon me if I inadvertently played upon your heartstrings. Also, my case of CRPS is pretty awful and I sometimes forget that most cases are not this bad. I shouldn't be dragging you into my freak show!

Editorial: Intravenous Immunoglobulin to Fight Complex Regional Pain Syndromes: Hopes and Doubts
Frank Birklein, MD, PhD; and Claudia Sommer, MD, PhD

From University of Mainz, Mainz 55131, Germany; and University of Würzburg, Würzburg 97080, Germany.

Chronic pain is multifaceted. It involves changes in somatosensory processing from the primary afferent neurons to the brain; it induces negative emotions, such as fear and depression; and it often entails serious consequences for working ability and personal life. Long-standing complex regional pain syndrome (CRPS) has all of these features and may be associated with substantial reduction of limb function, leading to physical impairment.

In recent years, we have made progress in understanding CRPS. Studies of the acute phase of posttraumatic CRPS show the importance of cytokines and growth factors for pain and hyperalgesia; the involvement of peptides in changes in skin perfusion, edema, and sweating; and the effect of sympathetic neurotransmission on pain in selected patients. We have learned that in long-standing CRPS, cortical reorganization of sensory, motor, and autonomic function might underlie the profound disturbances of the body reference scheme. Although acute CRPS can be challenging to treat, the outcome is often favorable. Treatment of chronic CRPS, when central neuroplastic changes are fully established, is especially difficult.


And so concludes a pretty accurate, if embarrassing, example of my emotional ups-and-downs as I follow the thread of medical news, in real time [as real as it gets at Marlinspike Hall, deep, deep in the Tête de Hergé (très décédé, d'ailleurs)]. Despite my initial over-reaction, all the subsequent information did not cause too much grief -- it simply served as a reminder that this is serious business, for serious people, and that one mustn't let hope get out of hand.

Right?



2/15/2010: I was definitively told, via bullhorn, to "step away from the study... toss your hope on the ground and step away from ridiculous hope." Yes, the Hope Police came down on me like the proverbial ton of bricks. My case is extreme; My case is refractory; My course is "complicated." And then there was this surprise statement from Dr. Go-To Guy: "Bianca, ma belle, this is old news."

As soon as I get my breath back, lobbying will begin for a little offlabel use of immunoglobulin. Shhhhh!


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