Duck

The sky is falling! The sky is falling!

Best advice from someone who’s already heard early  crackings and been knocked for a loop or two by a blue-sky chunk crashing the party hard down here: deal with it … and keep smiling.

My friends and former colleagues in the Gazette newsroom are dealing with some harsh realities right now, realities that shake the whole future of their chosen profession, slash at core beliefs and – just for a little more twisted pathos – can throw a humongous monkey wrench labeled identity crisis into the mix.

I feel I have some recently acquired expertise in this area since a goodly portion of several of my personal skyways have toppled onto my now battered (should I really add the godawful trite “‘but unbowed”) head. I don’t know if “I coulda been a contender”, but I do know I shoulda been wearing a safety helmet as I walked through the past year or so.

The people in the newsroom and in the corporation as a whole knew this had to be coming. Of course they knew it logically, but even though heavy heavy looms large and casts a shadow as huge as Dorothy’s house twisting over Oz, the shock when it bangs down on your corner of the world is devastating.

 I don’t sympathize, I empathize. My sky fell last fall. The reasons weren’t the same — my exit was prompted by medical devils, not economic ones. That my leaving the newsroom was financially beneficial to the company was tangential. Nevertheless, business is business, and all those other old saws that make sense … when it’s somebody else cleaning out her desk.

Thirteen news staffers gone.

How do you pick who goes and who stays? Who has to  weigh the pros and cons of who goes and who stays? Do you keep the leaders or the followers, the explorers or those who stay the course?

I’m glad it wasn’t my decision. I’ve been loathe to ask who went. I’m sure I’d have questions about many of  the decisions.

The 13 news staffers who left Tuesday undoubtedly had no more control over their going than I did. It wasn’t shoddy work, lack of enthusiasm or talent. It wasn’t even an unwillingness to change. It was tornadic outside forces screwing with life and a good portion of the screw was thrown my way.

No, I am not saying the company screwed me. The tornado winds of life, yeah, they took me for an unpleasant ride.

But I have learned you can rail against a tornado, but the tornado usually wins.

Maybe best to shake  your head, exclaim, “Wow, what a ride! I’m amazed I lived through it,” pick up the pieces and get on with life.

Like my son, the tattoo artist and philosopher, says: Shit happens. Deal with it.

Not the best news

A letter came from Mayo Clinic last week.

You remember them don’t you? They and their evaluation of my prospects for a kidney transplant were the impetus for starting this blog. That was before the leg troubles, the biopsy, the flood, the three operations that led to the leg amputation.

Yeah, those guys.

The letter informed me that their taking on “last chance” transplant cases and the resulting low numbers of success has prompted them to limit the number of last resort high-risk transplants they will perform.

Damn. Makes me want to offer up a prayer or forty to St. Jude, patron saint of hopless cases.

It’s not even that it makes me feel my chances for a transplant have lessened.  I’ve nearly come to the conclusion that transplant would not be possible for me since the costly anti-rejection drugs required on a permanent basis are only covered by Medicare for a couple of years.

I mean, let’s be practical: I’m already 62 years old. A new kidney would be great for me since it would probably eliminate the need for me to restrict fluids and allow me the freedom to eat more freely (though a new kidney would not cure my diabetes. A new pancreas would, but the kidney/pancreas operations are normally only performed on people who have Type 1 – what used to be called brittle – diabetes) but it wouldn’t solve other nagging medical woes like arthritis, general aging problems, the lack of a leg, etc.

In other words, even though a kidney would make me feel better and elevate my quality of life, my already existing problems would undoubtedly keep me from working full time and I think I’d need that level of work in order to afford the anti-rejection drugs once Medicare stopped paying. They’re now around $4,000 a month, as I understand it.

So I don’t think I’m pining for or entreating St. Jude for myself.

I understand on many levels why Mayo’s would want to have statistics that reflect a high rate of success. They’re known deservedly so for quality care. I was highly impressed with the evaluation process and the accessibility of the physicians. And I’m sure there are minimum standards they must meet even if they don’t take Medicare assignments.

But it just seems hard-hearted (a term I would not apply to any of the professionals with whom I had contact at Mayo’s) to pull the rug out from under ESRD patients who feel their last chance for a transplant is Mayo Clinic. Even if I decide there’s no transplant in my future, I want the hope that I could find a team to take on my case if I so wanted.

A tattoo in the future?

I came across an interesting news story yesterday.  Medical scientists are working on a glucose-monitoring tattoo ink that could eliminate the necessity to be a human pincushion  in order  to keep track of daily sugar levels.

Well halelujah!

It would be like a permanent mood ring with the color changing according to the level of glucose detected and would require only a small dot of color impregnated under the skin. Of course, if one has a son who is a tattoo artist, one can envision a larger piece of artwork that would change color several times a day.

Now wouldn’t that be a freak out? Makes me smile to think of it.  I can just see the tattoo I’ve wanted my son to place on my left bicep – a winged dragon emerging from its egg – changing from green to orange to yellow. Well, it might if it didn’t need infrared light to detect the color changes.

I would have that tattoo if my doctor would have said it was OK but since my diabetes obstructs healing, he felt I might be taking a risk to have the artwork applied to my arm.  Why a dragon? My son was born in the Year of the Dragon. Why coming out of an egg? In celebration of his birth, of course.

I even did a sketch once of what I’d like the tattoo to be. Aaron thought the idea was good, but he said I would, of course, pick an extremely difficult set of wings to depict. Well, of course.

My mother was pretty near speechless when she heard us discussing the at that time probable tattoo. “Why would you want a tattoo,” she asked wide-eyed. I said if Aaron was painting oil on canvas or in watercolors, I’d want to hang his artwork on my walls so why wouldn’t I want to have his skin art on my body?

Of course, in more practical terms, a color changing glucose sensitive tattoo would mean you’d never forget your testing equipment, you wouldn’t be leaving droplets of blood over napkins, fingers and clothes, your fingertips wouldn’t be pricked and feeling pricked, not to mention the dollars you could save not having to buy test strips. They can get very expensive especially if you’re asked to test four or five times a day.

Unspoken words

This spoke to me from “Eat Pray Love,” a memoir by Elizabeth Gilbert:

“There’s a reason we refer to ‘leaps of faith’ –because the decision to consent to any notion of divinity is a mighty jump from the rational over to the unknowable, and I don’t care how diligently  scholars of every religion will try to sit you down with their stacks of  books and prove to you that their faith is indeed rational; it isn’t. If faith were rational it wouldn’t be — by definition — faith. Faith is belief in what you cannot see or prove or touch. Faith is walking face-first and full-speed into the dark. If we truly knew all the answers in advance as to the meaning of life and the nature of God and the destiny of our souls, our belief would not be a leap of faith and it would not be a courageous act of humanity; it would just be … a prudent insurance policy.”

For some reason those words speak to me, give me permission to not feel that I have to find a single belief that has all the answers for me.  Acting “as if” may be enough to keep me walking along a path toward faith. Maybe I don’t have to find all the answers in one big glut.  Maybe my true faith includes a cup of  Christianity, a dollop of Islam, a  sprinkling of Eastern philosophy, a dash of spirituality all served on a bed of belief in the humanity of  man.

I think I like that idea.

Lookee here

There’s been progress on several fronts this past week:

• Prosthesis – The prosthetist added several more layers of leather padding to the receptecle that holds the stump and I increased the number of sock plies to 19. It’s time, Sherrie said, to go to the next casting for a new receptacle. She came Thursday to make the new cast, which will be considerably smaller because of the amount of shrinkage that’s occurred.  We’re a step closer to the final prosthesis. The new leg will be lighter both in weight and color. The next incarnation will be clear plastic and have a more flexible foot.  It will also have a lock and pin system that should keep the prosthesis  more securely positioned on my leg and require many fewer sock plies. The lock and pin system left me somewhat bewildered when Sherrie first explained it – with visual aids no less: A plastic  plate with a female connector to hold a pin is a new addition to the bottom of  the silicon liner sock. The pin Sherrie showed me looked like a heavy duty screw. Once the pin is “screwed in”,  she said, a button at the side of the leg locks the prosthesis in place. I spent the next couple of days trying to figure out how the prosthesis would screw on the leg. I had visions of a crusty one-eyed pirate twirling a peg leg around and around his stump while a green parrot loudly squawked encouragement from his shoulder.  The next dialysis treatment Don, the husband of a fellow patient, explained the peg wasn’t a screw. Each ridge on the peg is an individual circle. OOOOOOOOOOOkay. That makes sense. Duh. The lock on the side uses an individual ridge to hold  the leg in position.
• Vocational Rehabilitation – I received a letter telling me I am evaluated as having a “substantial disability” which means I’ll be high up on the waiting list of clients. They’re not taking new clients at the moment.
• The Gazette – It looks like I’ll become a “content provider” for a couple of online offerings including health and crafting. I’ve got some ideas for both areas that I hope readers will find interesting. I’m excited by the prospect.

Meanwhile, I’m still chomping through books at an alarming rate. More on that later.

Low energy

A combination of a respiratory virus, January doldrums and too damned much cold and snow has left me uninspired and weary.

It seems the most I can do is read and I’ve ploughed through a fair number of books in the past few weeks: Historical novels, a bonafied history text, a somewhat poorly written contemporary novel, the beginning of a series based on the exploits of a British soldier during the Napoleonic wars.

It’s true escapism for me, these novels based on careful research of the historical periods in which they’re set. We play the cable channel elevator music at night. Mom works her crossword puzzles and I read. I can barely stand to turn the TV on at night because there is so little that interests me. I’m even tiring of Dancing With the Stars.

It does keep me  occupied while I dangle in limbo witing for Social Security, Vocational Rehibilitation, and word from The Gazette about doing contract work.

I need to tap into more motivation right now, too. I’ve started outpatient physical therapy.  I’ve been going Mondays and Wednesdays before my dialysis treatments. It makes for a long day and I know I need to start walking more with my prosthesis. The virus really sapped my strength, though, and I’ve been trying to help Mom get over her bout with the bug, too. I hope we don’t start giving it back and forth.

At least that’s what I’m using for my excuse. I just can’t seem to get myself to pull the socks and leg on in the morning and walk the 100 feet or so to the dining room. There’s still some adjustment to be done on the prosthesis: It’s not really rubbing on my shinbone but it seems to generate enough pressure to make it uncomfortable and feel as though it’s nearly bruised.

I need to tap into the over achiever in me so I can meet or exceed what the therapist expects from me.

Maybe tomorrow.

And again …

It’s snowing again, quite furiously, swirling in all directions like a snow globe shaken by a delighted child.  It’s Christmas eve. I guess we have to forgive Mother Nature and realize that all the good little children can relax in the knowledge that Santa’s sleigh will have an easier journey due to the new fallen snow.

Anyway, that’s what I’m telling myself.

We had a Christmas gathering here Friday evening. I invited the three knitting buddies who have been such a help to me while I was in hospital and when I got home.  Alecia, unfortunately, got the good old intestinal flu Friday morning and was unable to attend. 

A good time was had by all, to use a cliche, with lively piano music and a visit from Santa Claus thrown in for good measure. Linda and Mary were each dressed in festive red and seemed to enjoy themselves.  I’m glad. They’ve done so much for me I was glad to give them a tiny bit of holiday cheer.

Saturday my old friend and coworker, Mary, brought me holiday greetings from the Gazette newsroom and an envelope bulging with money, more than enough to bring Aaron home over the holidays if not Christmas day.

I was so touched I was speechless, not a state I often experience. It was the thought that touched me so deeply though the dollars will certainly ease the strain of some upcoming financial needs.

I miss the people in the newsroom and I wish them all the merriest of Christmases.

And you, gentle reader, I wish you the merriest of Christmases as well.

Some encouraging words

I made it to the vocational rehabilitation appointment yesterday despite icy roads, closed schools and county roads, and difficulty arranging for transportation. Of course, I called first to make sure the office was open and I could meet with the person I was supposed to. Things went smoothly. I was told there was no doubt that voc rehab could help and that there was a good chance I wouldn’t have to be placed on a waiting list.

I indicated on the application form that I’d like help entering an online (because dialysis takes such a chunk of time during the weekdays and transportation to evening classes would be almost impossible to arrange easily) course on medical transcription, help setting up an office area in our apartment, and help obtaining driver’s education and getting a vehicle equipped with handicap controls.

I was introduced to the man who will act as my counselor, a proud graduate of Mizzou with a plush tiger tail hanging on his office wall and an alumni mug holding his beverage. He said he expected to be sending me a letter within the next 2 weeks and if I haven’t received it by then to contact him.

Recent observations

I never realized how much elderly women enjoy college sports. A large number of the women here at the independent living center are just as enthusiastic about college sports as the handful of men who live here. The focus seems to be mainly on the Hawks and Clones with the women. They are avid fans of both football and basketball. And here I thought it was just my mom, who’s a vocal sideline coach for the Hawks.

It’s amazing, once you become dependent on others for transportation, how much time you spend waiting. It can sometimes be trying to even the most patient person. Oh yeah, and automobile drivers have little or no respect for the fact a bus is much bigger, heavier and harder to stop than their vehicle even if they’re driving a huge SUV.

Television — network prime time and cable — really sucks. Why do we pay so much to have so little choice? I gotta start reading more.

Thought provoking

I’ve run across some interesting information on dialysis the past couple of days. In some ways, these two bits are philosophically  opposed, but they certainly are fodder for conversation. The first link will take you to You Tube. I don’t normally watch Scrubs, but I may start.

Scrubs – On death and dying

The second chilling discussion is on Bill Peckham’s Dialysis from the sharp end of the needle.
Seems the US is considering limiting dialysis a la the British health service route. Take a look at the recent posts on NICE and life quality.
They leave me feeling chilled but I must admit though as a patient they are unacceptable they do make some cold-hearted logic.

What do you think?

Vocational rehabilitation orientation and a correction

I made it to the vocational rehabilitation orientation meeting in plenty of time Thursday. It was a short meeting and I had already filled my application out at home so I was done and had another appointment set up within 20 minutes. The second appointment will determine what my disability status is and whether or not I’ll have to go on a waiting list for help. They’ll also ask me to sign medical release papers so they can get documentation of my medical problems.

I asked if I could have that meeting that same day, but that was not possible. Now I have to find transportation to get me to the voc rehab office by 11 a.m. Tuesday. I called the LIFTS dispatcher Friday morning to see if I could arrange for them to transport me, but the dispatcher was not at the phone when I called. I had to leave a message and had to include that I was soon to be on my way to dialysis.  I didn’t hear back from her so I’ll have to wait until Monday to see if they can transport me.

LIFTS is a service provided by the county that transports disabled people to various appointments they might have and to work and back. The cost — compared to other transportation available — is very reasonable but it can be difficult to get the transportation arranged.

One good thing about the voc rehab possibility is that there are no income restrictions on who can receive help from the program. That’s a good thing for me since the long term disability I will receive from work pushes me over most income thresholds. 

The correction mentioned is the cost of the medicare supplement and drug plan I’ll be joining.  The monthly premium for the 2 plans together will be $172.

I expected to enroll Friday, but it was a comedy of errors and phone tag. I called the agent about 20 minutes before I thought the LIFTS bus would be here to take me to dialysis.  He was on another call so I waited on hold.  The bus was early so as soon as he came on the line, I had to tell him I had to leave. I told him to call me at dialysis about 11:15 because I was sure I’d be on treatment by then. Comma but, the driver got a call to pick up another passenger to take her to a doctor’s appointment. That got me to dialysis about 11:01, just past my put on time.

When I was finally on treatment, about 11:20 or so, a nurse brought me a cellphone and said the agent had called about 11:15. I called back but he was on the phone. His assistant  asked for the telephone number but I told her I didn’t know the cellphone number and asked her to tell him to call the dialysis unit back. He did, 2 minutes before my treatment ended. He offered to call me at home and I said fine, but could he wait until 5 p.m. because I was sure I’d be home by then.

I wasn’t. The LIFTS bus was late and we had a third passenger who lives outside the city. She was taken home first so it added about a half hour to the drive home. I came in the apartment door about 5:05. Mom said the insurance agent had called.  I knew he was going to be calling from home and since I had neither his home phone or cellphone number, I figured I’d have to wait for him to call back. He hasn’t or if he did it was while we were in the dining room for supper.

Isn’t that the way things happen? When you’re counting on things to be normal, they aren’t. C’est la vie.