It takes a village

Knitters, in case you don’t already know, are extaordinary, generous people, at least in my book and my expeorrience.

It had been nearly a year since I’d been able to make the regular Saturday morning coffeehouse meeting of our totally non-exclusive all-inclusive band of knitters, but thanks to yarn buddies generous with their time and willing to wrestle a wheelchair and its occupant (that would be pirate-legged me), I’ve been at the last two Saturday gatherings.  It felt great and like the world had returned to a bit of normalcy.

It was awesome just to be out on an excursion that had nothing to do with medical woes and necessities and to be in the passenger seat of a car rather than rockin’ and rollin’ with the wheelchair strapped down to the floor of a bus with few, if any, shock absorbers. The wheelchair goes into the very back of the bus here at the center. I swear if I were a lactating mother my child would be feeding on milkshakes after each ride.

It’s also a treat not to have to wait and wait and wait some more for transportation. What a luxury to be able to just leave or go at the notion. It’s one of the marks of lost independence that galls.

But back to generous knitters. There were 8 of us there this morning. Not one was working on a personal project. All those flying needles were working yarn for new babies being born, socks for relatives, washcloths for troops overseas, stump socks for unknown amputees, and an afghan for an unknown family.

That’s the way it is at most gatherings of these knitters.

They’re generous with their time and support, too. Last June’s flood destroyed my yarn stash, an admittedly embarrassing horde that filled a closet underneath the stairwell in our apartment. My clothes were stuffed — and I do mean stuffed — into an antique English wardrobe because I turned my closet into a yarn trove.

  It all washed down the river.

But my knit buddies came to the rescue and created a new stash for me with contributions from their stashes. The yarn filled two large wicker hampers, several smaller baskets and a tote or two. None of which I’d had a chance to sort through until Thursday night when the “west side”  branch of CR Knits descended on the center here, commandered the community living room, whisked up my stash and proceeded to organize, sort and catalog all the yarn.

 When the evening was done, I had a ring for each hamper on which an index card for each yarn — along with a tiny snippet of the yarn — dangles with the card telling the weight of the yarn, the fiber, whether it’s washable, the yardage  and possible projects for the yarn.

How divine. And what a generous gesture of time and support.

The west side knitters come from all over town and started coming over here on Thursday evenings so I’d have knitting company even though I couldn’t  leave the building physically.  We also have a little offshoot of knitters who stop by on Tuesday afternoons to spend an hour or two knitting.

These women have made sure I know I can count on them and made certain I never feel isolated.

They are indeed a close-knit group of friends.

Been awhile

I’m still here and things are perking along.

A physiatrist, a prosthetist, and a physical therapist …

Sorry, no joke to follow.  That’s the appointment I have set for June 4 at an amputation clinic here in town. I saw the physiatrist yesterday. He, according to the head of the PT department, should help me pull all the different elements together. He also has special interest and knowledge of prosthetics.

His name is the same as a particularly unsavory (in my opinion) celebrity but I refrained from asking if he could do the moonwalk. He also answered the question I had as to why the top PT was so excited to hear that I had made an appointment with the physiatrist: I will be the first patient to utilize the clinic.

The PT’s excitement at my telling him of the appointment reminded me of that of a college instructor I had 10 or 15 years ago when I went back to school for a couple of semesters at the University of Iowa. I was of a mind to finish my degree in theater and had enrolled in a class called “Black Action Theater” because it sounded interesting and, frankly,  because there was room in the class. The class did prove very interesting, among the reasons because it gave me a taste of being a part of the minority in a community.

The first day I walked into the class, the instructor’s face lit up. I thought it a bit strange to see such a reaction but chalked it off as an instructor admiring the chutzpah of an older — or as they euphemized it at the time “an alternative” — student returning to college.  That, it turned out, was only one of his reasons he was happy to see  me in his class.  The other was because he planned a production of “The Wedding Band,” a play that examined an interacial marriage during the time of World War I.

He needed someone to play “a bigotted old white bitch” (my words) and I walked through his door, near the right age, the right color and gray hair, and I could play a bitchy white mother (”Herman’s mother” was the only name in the cast list).

Tryouts proved interesting, too. I knew I was giving a fairly accurate performance during the practice readings in the hall when a young black man stormed down the corridor away from me because he was angry at the words I was using and the disrespect the words conveyed.  When he came back up the corridor, he apologized and said he knew I was just donning a  role but it made him angry to hear the words. 

The director did choose me for the part and when he telephoned to tell me I told him I was sure he realized that the feelings expressed in the play were nowhere near mine but I knew the part needed to be played with stinging realism to make the impact needed. “Please make sure my classmates know I’m only playing a part.” He did.

The performances were intresting, too, and I received one of the best compliments on a performance when a woman came down to the stage after the performance and said: “Girl, I nearly came down here and slapped you upside the head!”

Phosphorus report

The Fosrenol seems to be working for me. My phosphorus level was down to 5 from 9.3. We are, however, still working on a way that I can afford the prescription. I’m leaving that in the hands of the ever competent Jodi and Dr. V.

Getting a leg up

I have made 4 PT treatments in a row! WooHoo!

I’ve walked over 500 feet with one donning of the leg and only a teeny tiny blister formed that I babied along without having to call a total halt to using the leg. By George, I think we’ve got it!

“Private Lives”

That’s the  working title to my historical fiction though I’ve yet to set cursor to the blank screen for chapter 1.  The research for both the book and the family is going well though it’s slowed the last couple weeks. It seems I have a literal bevy of babies I want to knit frillies for. I’m just halfway through 7 hat and booties sets and still clicking needles like mad. It does give me a break from the confuser and this keyboard that frustrates me nearly every time I sit down to it.

Wow and whoa

My phosphorus is high and that’s not a good thing. My level is about twice normal at this time. Functioning kidneys play a most important role in eliminating excess phosphorus. Non-functioning kidneys — mine — play no role. You can read some of the particulars here on the National Kidney Foundation site.

There are medications called binders that help in the elimination of excess phosphorus by binding in the colon, but because they are available doesn’t always mean they are practical for the average patient. I just got a call from my pharmacy saying the latest drug prescribed for me, Fosrenol, is not in the formulary for my drug plan and is not covered by preauthorization. It’s cost: $600. “Is that for 90 days,” I asked. “No, that’s for a 30 day supply,” she answered.

Back to the drawing board … or should I say prescription pad.

And back to revising the diet. Got to cut out more cheese, dairy products, nuts, whole grains, chocolate, dark colas … and the list goes on. Believe me, I already cut back on many of those things when I learned I had kidney failure.

Kidney disease sucks. A big one

A leg to stand on

I’m back in the prosthetic but watching the skin situation very closely.  The prosthetist brought the silver socks and did some retrofitting to the interior of the leg. It seems there are dual or even triple problems: 1) diabetes has stressed my skin; 2) in the place the blisters form, there are adhesions to the bone; 3) we’ve had problems establishing the contact necessary to combat blistering.

I’ve got to start making myself wear the prosthetic daily — starting with short periods — and need to work not only on exercises to strengthen the leg muscles but on loosening my hamstrings. Nothing like sitting at a desk for hours on end to tighten hamstrings.

Adieu to a friend

Minnie passed away last week. Another dialysis comrade I hate to say goodbye to. I learned a tremendous amount about her from her obituary. She was a strong woman who was instrumental in many community projects.  We’ll miss her around the waiting room table.

Mary Ann is back

Mary Ann is back at dialysis but not to her apartment. It appears this last illness may necessitate her moving into an assisted living center. She looks much improved and says a visit from Hershey, the cat she loves as much as chocolate, helped speed her recovery. It’s great to see her smile and bright blue eyes again.

Book research

The family and Civil War research is keeping me busy and at the computer for long hours at a time. The prosthetist tells me I need to start wearing my leg and elevating it at least slightly while I’m working. I think I’m going to have to get a small desk to accomplish that. Right now, the laptop sits on an oak TV tray.

The family research, of course, has gone well beyond the Civil War, actually in both directions. I mean how can you narrow your focus to a specific period when you find all this information? I find myself thinking, “I’d better get this into the family tree while it’s in front of my eyes.”

I’ve just started reading Shelby Foote’s narrative history of the Civil War and have learned more about the causes and political atmosphere in the first 75 pages than I ever learned in school.

All the time I’m reading and working, the book is on my mind: Where I want to start; who I want to include; what family stories; where I want to place it (I’m thinking dual settings as in both the homefront in Henry County and wherever the war takes I Company).

Needless to say, it’s all keeping me busy and that’s a good thing.

Silver lining

The blisters are almost healed. The scabs are gone and the new skin, though tender, seems to be doing well.  I will return to physical therapy next Wednesday.  The prosthetist will meet me there and we’ll be trying some new things one of which is a silver lining sock.

I’ve always wanted to have a silver lining to my life.

The silver helps to lessen stress on the skin, combats sweating and helps lower the risk of infection. Definitely good things for a diabetic amputee.

An encouraging visit

Dennis and Donna stopped by treatment Friday for a visit. Donna is recuperating from what appears to be a successful kidney transplant at University of Iowa Hospitals. She was all smiles and reported she’s happily peeing on a regular basis, drinking in the amounts she wants, and making rounds of social visits.

I say Wundebar! I was grinning as we talked because I was so happy for her and pleased to hear of her success. I told her we needed to have visits from  her because they’re an instance of progress we seldom see at dialysis. It’s more common to hear of regression. We all fight to keep the status quo and often feel — rightly so — we’re in an uphill battle.

I was doing a little self-examination as we talked: Was I jealous or envious of Donna’s new kidney and new found liberation from renal diet and fluid restrictions? Was I thinking, “Damn, why couldn’t that be me?” Actually not really. I was just happy to see Donna so happy and doing so well. A great deal of that is due to Donna’s positive attitude and sincere concern for others.

And speaking of concern

Please keep the name Mary Ann in your thoughts for good wishes. She’s another positive thinker with a bright smile who’s in hospital right now with a severe infection that’s kept her in intensive care far too long. All of us at the second shift on Monday/Wednesday/Friday are pulling for her.

Blistered sister

Damn.

And double damn.

I returned to physical therapy Monday.  Walked about 300 feet and did a one-step exercise. Joe also gave me a good hamstring stretch.  This is all good. uh huh. Decided to take my leg off once I got into dialysis so I wouldn’t stress my skin too much. About 21/2 hours into treatment, they did a foot check and asked to see my stump as well.  “You’ve got blisters here.”

Damn and double damn.

We called off PT for the next two sessions at least  and put in a call to Sherri, my prosthetist, to see if she could tell me what I’m doing wrong that’s causing the blisters. She just returned the call as I’m writing this post and told me to wait til she can take a look at the situation before I attempt to use the leg again. That’s a no brainer for me. The last thing I want to do is set up an infection. I’d rather be overly cautious than lose more of my leg, but at this rate it feels as if it will take a year to get in 2 weeks of PT treatment.

Jodi, the physician’s assistant in Dr. V’s office, prescribed something other than Immodium to try to control the loose stool problem I’ve been having. I certainly will be relieved if it works. I’m tired of doing a prewash rinse out of nightgowns and underwear. I know: too much information.

But, the sun is shining and the snow has melted and we’re not in flood-troubled Grand Forks, so smiles are in order.

Caught up

I’ve been caught up in getting caught up on a number of things and then, of course, I’ve been caught up in the beginning research for my historical fiction.

Where to start?

Prosthesis update

I have the second prosthesis complete with a more dynamic foot and I will begin physical therapy sessions again on Monday. I must admit I’ve lost some ground and I need to find my motivation again. Part of it seems to be from my sleep pattern changing. It’s proving difficult for me to get my considerable butt outta bed in time to get the prosthetic on to go down for breakfast or catch the dialysis bus. I’ve got to get back in the habit of getting UP when the alarm goes off.

The prosthesis is a much better fit, much lighter and more easily accommodated in “normal” clothes. Pulling on the liner sock takes more time because it is a much tighter fit and needs to be carefully positioned so the pin is in the proper place to fit into the female receptacle in the leg itself. I seem to be unable to get it right the first time which adds to the frustration level when I’m rushed for time.

Frustration level

My frustration level seems to be lower recently, too. I find myself grumbling out loud when things – seemingly small, inconsequential things – go wrong. I bump into a waste can trying to turn my wheelchair in the bathroom and a grumble erupts; I catch the wheelchair on the corner of the bed and a grumble comes forth; I hit the side of the apartment door while trying to exit and  I’m belching minor profanities as I wrestle my way through; the cursor on this laptop jumps up or down the page – as it just did – and I’m gritting my teeth.

You get the picture.

It’s tough when you think you’ve been patient and resilient and you’re trying to keep your attitude good and these inconviniences literally bump into your life. I want  to say, “Don’t bother me. I’m up to my neck trying to deal with the big stuff in my life and I could quit sweating some of  the small stuff  if you’d just quit slapping my face with it.”

Some not so small stuff to sweat

I’m also disconcerted by some stuff I consider not so small. I’ve been urinating very little the last couple of weeks. Even with the boost of a diuretic, I seem to have very little urine. I’m worried about what that means in the progression of this disease and what it means on the more personal  level of how much fluid I can intake during a day.

I try to keep within the 48-ounce restriction each day, but it is extrememy difficult for me. I feel deprived of fluid all the time even though I may make the 48-ounce restriction only once each week. It’s one of those things that makes me wish for a transplant. Dr. V has asked for me to bring a urine sample Monday to test for possible UTI or other problems. I hope I can gather enough for a sample.

I’ve also been having a long-standing problem with l oose stools (aren’t you sorry you asked? Oh, that’s right, you didn’t ask but I’m going to tell at least a little of them). The attacks hit so suddenly that clean up can often be necessary. It makes one loathe to get more than a hundred feet from a bathroom, preferably in one’s own home.

I’ll leave it at telling you I am now wearing Depends overnight as a precautionary measure and believe me it is no small blow to my dignity to mention my “preventive” measures.

Also, I seem to be suffering neuropathy in my right hand and lower arm. It’s bothersome in many ways including not being sure of my grip because the feeling in my fingers is numbed. It may be some arthritis in my right collarbone pressing on a nerve or it may be diabetes. I don’t know but I don’t like it. And yes, I know the collarbone is a strange place for arthristis, but so it was diagnosed.

Meanwhile, back at the . ..

The research for the novel is going well. I’ve learned an amazing amount both about my family and about the Civil War. I came home from a grocery store shopping trip Thursday with an expandable file, a small stapler, a set of highlighters, a ream of copy paper, index cards and file folders.

“You’re really serious about this,” Mom said.

Yeah, I really am.

A few reviews and a new endeavor

The three audience reviews I read online praised Who Lives?, the play that opened on World Kidney Day in the LA area, for its dramatic qaulity and black and white set. Bill Peckham of Dialysis From the Sharp End of the Needle doesn’t quibble with the dramatic content but says the entire story isn’t told and provides links to “the rest of the story,” as Paul Harvey would have said. Read his entry.

I would still like to see or at least read the play. Vested interest, don’t you know.

Meanwhile back at the homestead

As the waiting creeps on for vocational rehab and direction from The Gazette, I’ve decided to begin research on the 14th Iowa regiment, I company, during the Civil War. My great-great-grandpa served in the regiment, fought at Shiloh in “the Hornets nest” and was captured – along with over 200 other soldiers from the 14th – and discharged at Macon, Ga.

I’m thinking of writing a historical fiction based on his service, the homefront in Henry County, Iowa, and the family connection. There’s plenty interesting about Henry County at the time and about David C.’s family and neighbors. The story could start with the early pioneer days (David C. is first noted in the 1854 census but family names show up even before that date).

The county was also a settling place for Quakers as they met their way across the country. Those Quakers became part of my ancestry, too, and the push and pull they must have felt when it came to serving the union would have been strong considering their abolitionist tendencies and their pacifistic religion.

I’ve done some genealogical research on David C. beginning nearly a decade ago, put it aside too early and lost all the accumulated paperwork in last year’s flood so I’m duplicating now. I find it much easier to find information online than it was 10 years ago.

The realization David C. was a Civil War vet came from that earlier research, at least to my mom. I found the obit for David C., who had moved  many of his family to Oregon in the late 19th century, and read of his service. I soon asked Mom, “Why didn’t you tell me David C. fought in the Civil War?” Her answer was that she didn’t know he had.

Filling in the years after David C. left Henry County was nearly impossible at that time since a fire had destroyed the county courthouse in Oregon and most records of the time were destroyed. Perhaps I’ll  have better luck in this search.

Why historical fiction? Because I have no diaries or family papers to use as resource. Of course that means I have to set a plor, develop tension, develop character, set the scene, etc., not to mention find an agent, a publisher etc.  So don’t look to add the book to your Christmas list.

What do you think, should I blog about my search for David C. and the progress of the novel? In this blog or start a new blog?

I’d like to be in LA LA land this week

World Kidney Dayis March 12 and among the observances is the opening in Los Angeles of a play, Who Lives?.
I wish I could be in that opening nght audience.
It is a play about the first dialysis treatments offered in the U.S. and how the difficult decisions of who would receive treatment were made. Made by committee, how difficult it must have been deciding who was to receive treatment and therefore a reprieve of the death sentence they faced.
Such decisions should not be put in the hands of men, you could say with certainty, but medical advances have led to questioning medical ethics in many areas besides kidney disease.
It would seem times have changed and dialysis may seem available to all those in need, especially with Medicare provisions to help those of us who need the lifeline of dialysis. But will it remain so?
It’s a nagging worry at the back of my mind. Treatment for me totals – literally – hundreds of thousands of dollars a year, even at the reduced costs to insurance companies and Medicare.
Is my life worth it? Does my contribution to society warrant such an investment? Am I self-denigrating to even ask?
Sometimes the questions themselves can be overwhelming and I can tell you I am not so altruistic as to forfeit my “right” to treatment.
How would I have felt had I been one of the early dialysis patients waiting on a committee decision as to whether I deserved treatment or not? I don’t know, but I suspicion it would have depended on the decision made.
How would I feel if such decisions become part of the future of dialysis patients? It certainly could happen with health care costs on the rise and the number of dialysis patients surely on the rise as the number of Type II Diabetes patients climbs.
It often seems that the one control, the one decision I can have over my life is whether to continue with dialysis or not. A life and death decision, to be sure, and at this point one I do not wish to relinquish to a committee or to anyone else.

Good stuff, Maynard

I know people are out there looking for good things to eat on a renal diet. I know I was/am and I can tell others are by the number of times search engine requests for recipes and menus show up in my blog stats.

I haven’t been talking much about food on the blog because since the post-flood move to a “senior living center”, food isn’t much under my control. I don’t set the menu. I don’t make the food. I don’t cook in our apartment and I can’t afford the extra $200 a month to ask for a special diet.

All I do is eat around what they serve and, frankly, bitch about the taste.

I wouldn’t have the cook’s job here for anything: 20-plus residents who’ve been honing their individual food likes and dislikes for decades, a meat-and-potatoes generation who think sticky rice is a cook’s failure and blow torches have no place in a respectable kitchen. Add to that the kitchen staff cooks for two other buildings and you end up with suggestions in the box that would make the proverbial sailor turn scarlet and are nearly impossible to accomplish physically.

Then along comes a resident who  is a Type II diabetic with end stage renal disease. Talk about your diet restrictions, hoo boy. Just trying to order the “breakfast as you like it” can be like navigating a nutritional minefield.

Juice? Well, sure, but no orange juice (too much potassium and phosphorus not to mention the high sugar content). Grape? Um, too much sugar. Tomatoe? No, too much sodium (makes your body retain water, a real no-no for a renal patient, especially one like me with hypertension.) Cranberry? Well, that’s about as good as you’re going to get on a renal diet. Could I get that  ’light’? Afraid not. Juices are dispensed through machines and there are no ‘light’ versions available through the suppliers.

Toast? OK, comma but (here it comes, the dreaded comma buts) no raisin toast. Raisins are like plague to the renal diet. Too much potassium and phosphorus. Uh, and whole grains aren’t good for renal patients either. Ditto the potassium and phosphorus stuff. (There goes the daily bowl of  oatmeal and the tasty 12-grain toast.) There is a loaf of nasty old white bread on the shelf. Have some of that.

Protein? By all means. ESRD patients need all the help they can get warding off illness and helping to build necessary things like red blood cells. And protein doesn’t elevate blood sugar (always remember that diabetes is at the root of most ESRD). Bacon, nope… too much salt and fat. Ditto ham. Cheese? No, gotta limit dairy products to 4 ounces a day. Eggs? Not the best cholesterol-wise, but a girl’s gotta eat.

All these decisions, all this denial and it isn’t even 8:15 in the morning.

Lunch and dinner offer even less control. The menus are made by the kitchen staff. Today’s lunch: Chicken fried steak with white gravy; mashed potatoes with brown gravy; creamed peas; baked custard. Sound a little, oh I don’t know, can you say starchy or carb loaded?

Potatoes are a staple on the menu here, of course. People like them, they’re filling and cheap. I love them, too. (Ready for the comma but?) But I shouldn’t eat potatoes unless they’re leached overnight. The kitchen staff ain’t about to do that, believe me.

The peas are so-so, the breading on the steak, again so-so, but when you tally up the carbs (which matabolize like sugar which is bad for a diabetic… well, I think you get the picture).

I think I’m lucky my labs have been as good as they have been and my blood sugars in control (knock on wood).

Oh, the “Good stuff, Maynard”? I made Posole for the whole gang the other night. It’s not terrible for an ESRD or diabetic. Here’s a recipe to get you started.

POSOLE

1 1/2 c. cooked chicken

1 qt. chicken stock (use low sodium)

1 medium can diced tomatoes with juice (use no salt added, if you can find it)

1 large onion, chopped

2 cloves garlic, minced

1 to 2 Tablespoons cumin

1 to 2 Tablespoons mild to medium chili powder

2 Tablespoons olive oil or vegetable oil

1  4-oz. can chopped chilis (medium)

1 can white hominy, drained

Juice of 2 limes

1 tsp. lime zest (optional)

1/2 c. fresh cilantro, chopped (chop a cup full and save half to garnish bowls)

Tortilla chips

In a kettle or large saucepan, sweat onions in oil until translucent; add garlic and half of cumin and chili powder. Things should smell good already. Cook on medium heat until spices are slightly toasted. Add chicken stock, tomatoes, chilis and hominy. Simmer for 20minutes or so. Taste and adjust seasoning.

(You should have a rich  stock that looks spice-laden – a bit of an orange film on top. It is, but it isn’t going to burn your mouth, unless you want it to. You can add all the hotness you want. I don’t care, it’s your soup and your mouth.)

Add cooked chicken and just before serving add the lime juice, zest and chopped fresh cilantro. Don’t omit this step or these ingredients. They’re what make the soup “Good stuff, Maynard.”

You can add to the soup — black olives, etc. — but I wouldn’t subtract any ingredients from this basic recipe. Serve with as many Mexican condiments as you like (black olives, sour cream, shredded lettuce, shredded cheese, chopped onions). You can also substitute meats (pork, turkey, cornish hen) in fact, the truly Mexican version calls for starting with a pig’s head. Sorry, you’ll have to tap Anthony Bourdain for that recipe.