Archive for the 'Daily Struggles' category

No Going Back

Feb 28 2014 Published by under (if) Elder (why) Care, Daily Struggles

I have a good friend with some chronic health issues. Our lives are very different, but we have much in common. We talk about how losing a husband or a career changes your identity and understanding of yourself. How the responsibility for young children or elder care grinds at you, day by day. How illness turns what was once a pleasure into a source of dread.

We both had our social circles, liked to eat out. Then health issues made that impossibly difficult. At my worst point I stopped eating out altogether; she went down to two places whose food wouldn’t harm her. I have since been able to reintroduce many foods into my diet and can eat at a wider variety of places; she is still mostly limited to the two, so that’s where we go when we go somewhere.

We both know what it’s like to try explaining complex dietary restrictions. “Peanut allergy” and “gluten-free” are in the general public vocabulary, but “onions give me migraines” and “I’m eating raw or plain food” are not.  A few weeks ago we went to see a favorite band, had dinner at a nearby Asian restaurant. She asked for steamed vegetables and brown rice.  It was the work of several minutes to convey this as a serious request. Usually Asian restaurants are safe bets for her; everything is to hand and it’s no big deal to throw a few steamed veggies on a plate. Why it wasn’t this time, who knows.

And then there is the discomfort your dining partners experience. They will range widely across the menu and enjoy their meals with gusto. They can’t help it, and you don’t want them to. But it makes them feel bad, when they look at you. Sometimes your dining partners are not just discomfited, they’re angry. Why don’t you just try a little x? Are you sure you can’t eat it? Do you have to be so picky? It’s so difficult every time we go out to eat! Eventually you just stop going out to eat. Except to your two places, with the handful of people who understand.

We vent together  – food, our once taken-for-granted good health now gone, the responsibilities weighing us down, the isolation we experience. One day she said “People say when God closes a door he opens a window. I’ve been waiting for my window for a long time. I try to keep hopeful, but I just don’t see it. I just keep wondering, when am I ever going to get back to myself, back to [the person I was before marriage and children and divorce]?” Here, dear Reader, was the time to blow sunshine up her ass with a cheery “keep hopin’ on that window!” Or not. I chose not.

I said that some experiences we have change us so profoundly that there is no going back. That person is dead and gone. We are now some new version of ourselves, and it is not the person we were planning to be. The door was one-way.  The view from the window is strange. We can look over our past, and should be generous to the person in those memories. But we have to grapple with this and now. Quite often, it is not a lot of fun. Not that there isn’t fun to be had, but there is also the realization that life never lets up for one damn minute, till you’re dead.

Obviously a stroke, lost career, and years of severe migraines have had their effect. But it’s the past six years of elder care that beat a lot out of me.  I know elder care made me more aware of disability issues, even helping me see my own chronic illness in a stronger light. I know it made me value kindness more highly than ever. I know it gave me the gift of long hours spent with my mother and in-laws that would otherwise not have been. But I am also a duller, slower, person with an even narrower life than before.

I am slower in part because I am older – the difference between 45 and 51 is real and I feel it. The slowness is also because the work and stress and worry of the past six years tired me out. I am disinclined to work really hard at anything. I am hoping spring and the garden will have some reversal effect on that.

I am a duller person. It takes me longer to read. I can’t always follow what’s going on in a commercial – there’s a lot of flitting from one image to the next so fast a dull mind gets lost and quits.  I am more forgetful. I struggle more for the right word or name. Some of this is due to natural aging and the effect of menopause and also no doubt to the effect of so many different meds mixing in my body. But I know that part of it is due to the long, steady drain of elder care on my cognitive resources.

And my life is narrower. The intermittent but unpredictable debilitating migraines had taken away my work connections and most of my social life. We had moved from one state to another. The few friends I once had in this area had themselves moved away. Children and church are the two other main conduits to social interactions, and I had neither. I was just taking baby steps to build a social life for myself without the usual resources of work, family, and church, when elder care arrived on the scene. Elder care is a chronic unpredictable set of minor and major disasters plus daily repetitive tasks that are always urgent and never completed. It gradually swallowed up more and more of my time. It occupied my mental and emotional energy even when I wasn’t directly engaged with it. It became my new job, family, and church all in one – just without the social contact.

In this and now, life will still not let up for one damn moment on the slower, duller version of me. I am aware that, if I’m lucky, I have about thirty good years left. I would like my slow, dull ass to do the best it can with them. The view out my window right now is blank. Apparently tilling and planting of the earth are required of me, if I want to enjoy the view.

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The Cabbage is Sad

I've been eating a soup of struggle, pain, and loss for the past two years. Still I have not found my way back to the center, and I begin to suspect there is no one who will or can say "stop, little pot".

Mr. Z and I throw in a dash of bluegrass festival or getaway vacation or just an evening's Jeopardy-watching marathon to season, as we can. In this way it is possible to continue eating the soup; our eyes meet over the rim of our bowls, and we remember the world-without-soup.

In the past few months, we have been eating the soup of sorting, packing, giving away, and leave-taking. My siblings and I are clearing out the house my mother lived in for over eighty years, the house she was, literally, born in, so that it can be sold. Mr. Z and I are helping his parents winnow down their already-once-winnowed possessions for the move from two-bedroom condo to daughter's house. Three lifetime's worth of belongings form a river past our selves; some diverted to siblings, some to charity, some to us, until the river will dry up. As our tributary washes in the front door I begin to dig a channel out the back, pouring in unworn clothing, unused bedding, dishes-replaced-with-dishes, furniture-with-furniture. My channel is no match for the tributary, itself a tiny offshoot of the river; the house floods with worldly goods, memories, and regrets. The river itself would drown me if I am not careful.

Yesterday evening Mr. Z came home with three pottery bowls and a cookbook. You've seen the type; a church or community or extended family gathers favorite and treasured recipes; they are typed up, printed, often spiral bound with a cover evoking embroidery or tatted lace. This morning I began reading the tales of food, love, friends and family. Appetizers and Pickles proved disappointing. How many Taco Dip recipes does one need? The next section was Soup, and there it was, first recipe on the first page: Cabbage and Potato Soup. Hungarians, cabbage and potato soup - surely this will be good. The ingredients list included Kalbasz and sour cream; very promising. And then the first instruction:

Place cabbage in large bowl; sprinkle with salt. Allow it to get sad.

If only this cookbook came with a bubba! Perhaps a DVD bubba, if a real-life one cannot be assigned. A bubba to say "this is how cabbage looks and feels when it is sad; this is what I mean by 'stir occasionally'; lard will not kill you, eat, eat!; done but not mushy is like this; season to taste just so; and here is where you can get real Kalbasz, or how to make it if the old ones are all gone."

Alas, it does not. My mother is gone. My mother-in-law is moving away. I shall have to content myself with My Grandmother's Ravioli. And imagine I am a bubba myself, and try the Cabbage and Potato soup recipe. I will allow the cabbage to get sad; I will stir occasionally; I will cook until tender; I will cook until done but not mushy. I will mix and return to pot. I will season to taste, and I will always remove scum from top of water when cooking with small strainer.

I will do all this, as A.W. asked, in memory of E.R., and in honor of all the bubbas who so willingly cooked and served up food and love against the struggle, pain, and loss, all throughout my life.

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Leaving A Dream Job For A Dream Life

Do you wish to know the secret of happiness for two-career relationships? Would you like to know the magic that makes long distance relationships work? You are destined for disappointment, then, for these are (mostly) the wrong questions.  Continue Reading »

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"Side Effects": My Life With Cymbalta

According to the official site for Cymbalta, the most common side effects experienced when taking it are:

nausea, dry mouth, sleepiness, fatigue, constipation, dizziness, decreased appetite, and increased sweating

It doesn't sound any worse than any of the other stuff in my medicine cabinet. Reality was another adverse event list. In fact, I bestow upon Cymbalta the rank of Number 3 in the list of Worst Ever Drugs I Have Taken, behind No. 2 Topamax and No. 1 All-Time Winner Depakote.

The full package insert mentions that minor weight loss was seen in clinical trials. In two trials, minor weight gain, no more than a mean of 1.4 kg, was seen. I gained 13.6 kg in a matter of months. I might have been willing to live with the new-found weight if I hadn't also had to say goodbye to orgasms (but not, frustratingly, desire) at the same time. Ultimately, this was the "side" effect that pushed me to tell my doctor I wanted off Cymbalta.

I had a two-week ramp down period. By the time that was done, so many other things that I had not realized were also Cymbalta side effects had vanished or begun to dissipate. For example, excessive flatulence, which I had blamed on menopause. Mea culpa, menopause! I still hate your hot flashes but you're off the hook for this one! And while I did get Cymbalta's promised sleepiness and fatigue, I got something else no one had mentioned: insomnia. The insomnia worsened over the course of the year I took Cymbalta and it was blamed on all manner of other things: stress and grief, migraines messing up my sleep cycle, kittehs in the bed, Mr. Z's tendency to bodily transform into a windmill at night. A week after the last ramp-down dose, I was sleeping through the night like a baby. A baby without colic, one of those good ones that doesn't wake up or cry and makes you think having another wouldn't be such a bad thing.

Falling asleep was a breeze! I no longer had to get out of bed two, three, five times for a robust bout of micturition before finally falling into an exhausted semi-sleep at two, four, maybe six a.m. I had thought the excessive nighttime voiding was just another symptom of encroaching old age but no. It was my pal Cymbalta, partying with my bladder.

I'm used to meds that fog my brain - see Nos. 1 & 2 on the list of Worst Ever Drugs I Have Taken. When Depakote made my hair fall out in what should have been alarming amounts, I didn't mind, because I was taking Depakote! I didn't mind about anything! Topamax is nicknamed Dopamax for a good reason. I love Zonegran as its replacement because it has much less impact on word recall, spelling, and general short term memory and because, vainly, it made me lose weight. Until Cymbalta, the asshat of drugs, came along. Every pound Zonegran spirited away, Cymbalta ferried back, plus more. I have a dear friend whose sure to be a bestseller autobiography would be titled, she says, "I Hate You: An Explanation". A not entirely inappropriate title for use in discussing Cymbalta! The drug that makes you fat and stupid! A week off the drug and it was truly like a fog was cleared from my brain. I could think more clearly, focus a little better. I didn't feel quite so tired. (Well, maybe that had something to do with being able to fall asleep and stay asleep.)

What else? Constipation, of course. That was the least of my problems. Here's a good one. Although it is discussed on the package insert in some detail, neither my prescribing doctor nor my neurologist mentioned to me that Cymbalta in combination with blood thinners can lead to bleeding problems, in some cases potentially life-threatening. My PCP made this connection after I showed up in her office with softball-sized dark purple bruises on both hips. By the time I saw her, the swelling had at least gone down; they were still extremely painful. How did I get them? I was on an Amtrak train, and sat at a table in the cafe car for a few hours reading a magazine. The benchlike seats in the cafe cars are not padded. The gentle rocking of the train back and forth was enough to generate massive bruises where my hips bounced against the hard edge of the seat with each sway. Needless to say, this should not happen. This was a week before mine and Mr. Z's annual vacation to a warm beachy place and we both know my purple thighs attracted a few looks. We half-seriously joked that we should make a sign for my back: No, I'm not a battered woman, it's just the medications. Because my thighs looked like I was.

The very worst is something I can't absolutely prove, but of which I feel fairly certain. After ten years of taking this and that and the other medication and observing the intended and "side" effects on my body, I think I know when there is a connection between a med and a mess. In this case it is a bit more tricky as you will see, but I still feel strongly about it.

I started taking Cymbalta in November of 2011, and was told that as an added benefit I might expect it to help with my migraines, as it has a known effect on pain. In January of 2012 my migraines began to worsen, becoming more severe and more frequent. We blamed the odd weather patterns, we blamed my insomnia and resulting screwed up sleep cycles, we blamed a possible failed botox treatment and/or developing insensitivity to botox. Things went from bad to worse and eventually I was hospitalized for a week in May. I came out of the hospital headache-free and with a new preventative medication. Unfortunately, shortly after that began a series of family loss and illness that went on for months. The health I'd gained rapidly unraveled. The botox treatment I had in the middle of all this didn't do much good.

The last botox treatment was just a few weeks before I stopped Cymbalta. And then the migraines improved - less severe, a little less frequent. The family stress is only moderately better. So either the last botox rocked my brain's world, or taking Cymbalta for migraine pain is just like bashing your head against a brick wall - because it feels so good when you stop.

Despite all the bad experiences - and there have been many - I have had with medications over the years in the effort to control and prevent my migraines and prevent another stroke, I have remained a strong believer in medication to treat what ails you. To a point. I saw my mother's med list climb to nearly 25 different meds, until her PCP and a rehab doctor pared it down to 13 in a radical revision during a rehab stint. Afterwards she was more alert and lively, more engaged and cheerful, more full of affect in general. And she was less like a shambling zombie in her movements. I've read that one risk factor for falls in the elderly is taking more than 5 different medications. My own med list has been climbing in fits and starts over the past 10 years and it frightens me. I don't want to become an affect-less shambling zombie pill swallower, and I'm afraid I may already be one.  How many meds in my pillbox could I do without, are there others that are hurting more than helping me? It's a question I think about a lot more since my life with Cymbalta.

 

 

 

 

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What Keeps Women Apart From Other Women? Discuss!

Sep 27 2012 Published by under Daily Struggles, Isn't It Ironic?, Naming Experience

1) Have you ever been buttonholed by a woman recently ejected from her science career, anxious to tell you her tale?  You know it will be filled with sadness and anger.  You know you should listen and give some form of support, maybe point her to some resources if she’s asking and you know them.  But what you want is to disentangle yourself as quickly as seems decent.  You wonder whether if maybe she wasn’t that great in the lab and has jacked up a few disparate events to cover for her deficiencies.  You want to get away in case whatever she has – bad lab karma, a kick-me sign – is catching. You feel slightly ashamed. Still, you hand her off to someone else with a palpable sense of relief and head for the door.

 

2) Have you ever been approached by a woman scientist looking to start a support group for women at your level? Something informal, meets maybe once a month, just get together over some munchies and talk about how things are going, share career advice, provide moral support. You say it sounds like a great idea but you aren’t sure you can commit to another project at this time.  You really need to keep your head down and get this set of experiments/thesis/job search/grant proposal/tenure packet/promotion under your belt before you can even think about anything new.

 

3) Have you ever gone to a conference where you knew a Famous Woman would be present and you were excited to meet her, your hero? And you are finally introduced to her, and she’s in the company of Professor Eminent Graybeard, Dr. Big Swinging Dick, and Dr. New Hot Thing? And she gives you a brief nod and a cursory hello and goes straight back to her Important Discussion with the boys? And you get the hint and wander off, and never get another chance to speak to her, let alone meet the big boys?

 

4) Have you ever found yourself in the position of being the Famous Woman at a conference, and you just couldn’t find a single minute to introduce yourself to any n00bs, take a little time to mentor someone, or participate in the women’s caucus, if there is one? Did a n00b approach you with shining eyes and tell you she is such a fan, because you have done X! And you drily reply, “Well, yes, but I’ve also done Y and Z,” irritated that the n00b doesn’t even know this significant information about you. You! The very things that make you a Famous Woman! Who is this crazy person who thinks she is your fan? And you turn back to your conversation with your Important Friends, giving the n00b some of your back so she knows to go away?

 

5) Have you ever been at a talk about the advancement of women in science, and during the Q&A you opine that such talks bother you, because you (the only woman ever hired into your department) have worked very hard and been extremely successful as a result, and you didn’t get any help from anyone, or any special treatment or lowered standards to make it easier to get to where you are, and you resent the idea that spreading talk like this around is going to make other people question your credentials even though you don’t believe in this hogwash?  Women just need to work twice as hard as men to prove they can do the work, and the men will see they are capable and they will get the jobs!

 

6) Have you, a white woman, ever had an HR or department admin bring to you a talented person of color, because “you will know everything about being a minority in this field, and can help them out”?  Have you, a white woman, ever been tasked with orienting a woman of color to your lab, and begun (and sometimes ended) by saying “you probably want to know where the Multicultural/Diversity Office is. I’m not sure, but I’ll look it up for you.”  Or you assume the new woman likes to drink heavily, or is interested in scoping out dudes with you?

 

7) Have you ever wondered why we women have so many ways to keep ourselves from joining in solidarity? Why we believe so much the lie that individuals are responsible for all their success and all their failure, so we each need to get cracking in our lonely monk’s cells? That failure might be catching if you talk about it, but not success?  That other women are the real enemy?

 

Discuss.

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Washington Trades and Labor Building

A few weeks ago I was in Washington, Pa - or what everyone in southwestern Pa refers to as "Little Washington". I've been there on numerous occasions but this was the first time I'd seen this building.

Washington Trades and Labor Building, Washington, PA

 

This is a closer view of the entrance.

Washington Trades and Labor Building entrance

 

The building now houses the Newman Center for Washington & Jefferson College on its second floor.

What had originally caught my eye, and led me to want to investigate more closely, was the stone slab on the lower left of the building front.

Inscribed stone slab on the front of Washington Trades and Labor Building

 

The inscription reads:

This granite is dedicated in memory of our brothers and sisters of Washington and Greene Counties who paid the ultimate price for employment many of which due solely to corporate greed and employer indifference to safety.

"Pray for the dead and fight like hell for the living" Mary Harris 'Mother' Jones

"The present age handed over the workers, each alone and defenseless, to the unbridled greed of competitors...so that a very few and exceedingly rich men had laid a yoke of almost slavery on the unnumbered masses of non-owning workers." Pope Leo XIII

It's difficult to describe how I felt when I read that. It was breathtaking to see such strong words chiseled in granite right there out in the open for everyone to see - right here in the age of Scott Walker and Mitt Romney.  It's not some very old monument either - it was dedicated in 2001.  I haven't been able to find any information about the building or the granite marker.  If anyone knows anything about either, I'd appreciate it if you'd leave a comment.

If the Republicans have their way, we'll be right back in the world these quotes describe - indeed we're heading there.  It is so discouraging to a child of a UMWA man, to see how beaten down unions are in the U.S. today.

 

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Are You A Mentor? Or A Dementor?

Contrary to popular belief, dementors are not just imaginary creatures who live in J. K. Rowling’s imagination and the Harry Potterverse.  Anyone can be a dementor, at any time, to anyone.  Most of us, given the choice, would likely rather be a mentor than a dementor, I think.  But can you recognize the signs – in yourself, or in another?  Herein I offer a wee guide.

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Where's Zuska?

Perhaps my three remaining readers have been wondering just that.

(BTW, thanks Cara, for yelling at the spambots for me in my absence.  I cleared out a bunch of spam and then moved your comments since the spam was no longer there for you to be yelling at.  If you want me to put them back I will, just leave a comment here.)

The short sad story is that since the end of January, I've been beset with migraines on a daily basis.  I think I've had maybe a week's worth of days scattered here and there when I didn't have headache for at least some portion of the day.  Sometimes when Mr. Z asks me if my head is hurting I have to think about it for a minute because I can hardly remember what it feels like for it not to hurt.

Today I was good until about fifteen minutes ago, and now the headache is starting.  Yesterday I was sick all day and missed Easter with Mr. Z's parents.

Anyhoo, I tell you this not to garner murmurs of sympathy, but to let you know why this blog has been so silent.  I just have not had the energy or enough time without headache to put together a blog post (or even clear out spam).  Expect posting to be highly erratic, if at all, in the near future.

I am hopeful, though, that I may soon get the migraines under some control again.  This all started with a strained rotator cuff.  The docs figured the chronic migraines + poor posture + sleeping on left side added up to strain on the left rotator cuff.  I began physical therapy for it, and suddenly the migraines worsened despite a fresh botox treatment.  So then the docs figured that the work on the muscles, which was good for the rotator cuff, was affecting nerves in some feedback loop and causing migraines.  Get it?  Migraines lead to strained rotator cuff, and fixing strained rotator cuff leads to migraines!  Yippee!  Another factor was the absolutely bizarre winter we had, unnaturally warm and very changeable from day to day.  Rapid weather changes almost never play nice with the head.  It was all a big mess.  By now, though, I've mostly got the rotator cuff under control and am getting PT for the migraines - who knew there was such a thing?  But it does seem to be helping - sometimes a day and a half or even two days relief after a session.  And coming up soon, my next botox treatment.  Maybe by the beginning of May I'll be back to my old regular migraine schedule and can pick up blogging again!  Keep your fingers crossed!

Even though the  PT is working, and even though my insurance says I get to have 60 PT visits in a calendar year, it turns out that after you go 25 times they put you under "review".  This means they stop paying for your PT while they think about whether or not you really deserve to have health care.  One to three months later, when they finally decide whether or not you are worthy, the decision comes forth: either they pay for the PT you've been getting, or you are stuck with the bill.  Of course, you can wait three months for them to decide, but if you can go three months without PT, did you really need it in the first place?  This is known as "having generous PT coverage" in your health insurance and one should be grateful for it.  Pray to be fixed by visit 60, and not to have anything else go wrong the rest of the year. Also pray that the insurance gods consider your rotator cuff and migraine issues separate enough that they will allow PT for the migraine even if the rotator cuff seems to be mostly (though not completely) cleared up. While you are doing all this, brace yourself for the next round of begging said insurance company to cover your botox treatments, because Treatment No. 4 of the alloted four treatments is this month, and you have to convince them again that nothing else works and you really do need botox and you weren't magically cured in the past year.  Good luck!  And try not to be terrified when you see an ad from your insurance provider promising to help companies "manage" the "5% of your employees responsible for 20% of your healthcare costs".

Well, thanks for listening to the whining.  I hope to see you back here soon, with more cheerful sorts of rants and commentary.

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Things I Found Ponderable: #scio12 Report the Second

Gather round, Zuskateers, and you shall hear the tale of Clang!2 - White Privilege.

If you will recall, in Report the First, Zuska looked deep inside her own brain and found a squirming pile of sexist maggots gnawing away at her will to transform the world.  Report the second is just as unlovely!  So grab your popcorn and let's get started!

Many of you Zuskateers know that some years back I had a stroke caused by a migraine, and that the stroke made my migraines much, much worse - so severe and frequent that I had to quit working.  You may not also know that I lost nearly all my vision at the time of the stroke.  It gradually returned over a period of several months, but I did not get it all back.  I was left with a blind spot in the upper right quadrant of my visual field. It's not a black spot in my vision.  If I really pay attention, I can see that the area of the blind spot seems to have been rubbed or erased out.  But most of the time I don't even see the blind spot.  It's as if my brain takes everything it sees around the hole that is the blind spot, knits it together to patch up the whole, and tells the rest of me, "Okay, no problem here.  What you are seeing is all there is to see."  Oliver Sacks has written about this phenomenon in an essay titled "Scotoma: Forgetting and Neglect in Science".  (It's in a hard to find book called Hidden Histories of Science that is worth seeking out.)

My blind spot is a case of my brain not letting me know what I don't know, and I have to actively work around this to get the information I need, properly interpret the world, and keep myself safe.  Signs are sometimes hard for me to read because I don't get all the information at once, my brain can't make sense of it, and is too stupid to imagine that there might be something I'm missing.  Same thing when I'm reading the paper - I get to the end of a column and think "that story ended oddly".  Then I move my head and see there's an upper right part of the page - oh look! more story!  Finding things on the computer screen can be a nightmare.  I work hard to pay attention because I know I'm missing stuff, but it is exhausting, and sometimes I just quit.  I watch tv knowing I'm seeing about 3/4 of the picture but so what.  It'll do.

I tell you all this because my scotoma is the perfect metaphor for Clang!2.

Continue Reading »

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There Is A Dinner Policy And We're Sticking To It!

Dear Kittehs:

Dinner is at 5:30 pm.  You know it, I know it.

Why must you start hovering about me like two hungry vultures at 4:30 pm?This helps no one.

Your frequent mini-whimpers suggesting you have not eaten in 12 days,  softly nudging my knee with your sweet little nose, gazing at me with your large luminous eyes - it's all intended to  induce the Catholic guilt ever lurking just under the surface - and you're right.  But we both know if you eat now, you'll just want second dinner early, too.  Then you'll be thinking you should have third dinner. That way lies madness.  Also, dirty looks for mommy from the vet  when she brings in two fat kittehs.

Thank you for your understanding.

Love, Mom

P.S.  See, it wasn't so hard to wait that long was it?  We can go get dinner now.

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TRAPPED!!!!

Oct 27 2011 Published by under Daily Struggles, Magical Thinking File

Day 1, Hour 1 of captivity

Conehead lies in despair next to the bathroom door.

If only it would open and let him out.

14 days of this hell????

He swears he'll never eat another needle if only you let him out to sweet, sweet freedom.

 

 

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A Week's Worth...

Aug 04 2011 Published by under Daily Struggles

...of migraines.  That's what I've had.  I think they are starting to wind down, more or less.  Sleep cycle getting back to something like normal.  Fingers crossed for getting in some blogging tomorrow.  Soooooo much I want to blather on about right now...okay, off to sleep, and see you soon.

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Hunger Relief vs. Poverty Relief: I Vote For More of Both

Last Saturday I came home from the farmer's market, made mega-veggie eggs for me and Mr. Z, and blogged about it.  Zuskateer Kea commented

All very well if you can afford it.

And she's right.  I am extremely fortunate both to be able to afford nutritious fresh produce, and to have good sources of it readily available to me. In parts of Philadelphia with high poverty rates, there are no grocery stores at all, and corner bodega shops may carry little or no fresh produce.  A recent series of articles in the Philadelphia Inquirer about efforts to support community gardens and teach young children about gardening and good eating habits revealed that many young kids in the city don't even know what fresh fruits and vegetables look like, and can't identify them by name when they are shown them.  This is an abominable situation.  Our young children, and the parents struggling to raise them, deserve better. Continue Reading »

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Still Here...Sort Of.

Rumors of this blog's demise have been greatly exaggerated.

I made what I thought was an April Fool's joke funee, and found out some of my readers took it seriously, which wouldn't have been so bad, except I promptly entered one of those phases where blogging became next to impossible, so it really did look like I'd packed up and gone away.  That'll learn me, as my dad used to say, not to joke about serious stuff like blog network hopping.

Anyway, I am still, in theory, blogging at Scientopia.  It's just been the usual life madness.  A picture being worth a thousand words, here's what I've been doing lately.

This morning, the phone rang a little after 9 a.m.  It was the person from my neurologist's office who they've hired to work full time on dealing with insurance companies solely on the issue of getting approval for botox treatment for migraine.  She was calling to tell me that she has left numerous messages for my insurance company's rep and has not gotten a reply, and now it's my turn to try and roust them.  The insurance company has denied my request for coverage, claiming there is insufficient evidence to show that I've failed three alternative treatment options.  The neurologist's office says they've sent them the information.  The insurance company rep says they would be happy to talk with the doctor's office, and the doctor's office rep says they would be happy to talk with the insurance company.  This game has been going on since I got the rejection letter sent out on April 16.  I have until June 16 to get my appeal completed.  I am not optimistic.  I feel like I am swimming in molasses.  I will never reach the shore, and will drown in this sticky morass of everyone saying they are happy to help me if only the other person would do x, and the other person saying they have done x, and would be happy to help me but the other person needs to do y, which is what the first person said they can't do until the second person does x, which their office shows no record of it ever having been done, but if I could call them and ask them to fax x over, and the second person says we faxed mini-x and it's their own fault if it isn't sufficient because they wouldn't let us send more than mini-x and the first person says the second person should know that we need x and the second person says I can't get the first person on the phone and the first person says just ask the second person to call us and...and my head hurts.  It hurts a lot.

Five minutes after I got off the phone with the neurologist's office, my phone rang again.  It was someone from the endocrinologist's office.  They filed a claim with my insurance company for my visit a month ago.  The insurance company has refused to pay until they receive an explanation of benefits form from my Medicare insurance.  I don't have Medicare insurance.  The kind woman on the phone tells me "they are doing this to a lot of people.  You'll have to call and tell them you don't have Medicare, and ask them if they can reprocess the claim or if we have to refile, and then call me back and let me know."

I haven't even had a cup of coffee yet, and I have at least three health insurance phone calls to make.  Plus a form I need to fill out for my in-laws.  Plus the usual paperwork for Z-mom.  I look at the cat curled up on the bed and want to crawl back under the covers and sleep till noon.

A few weeks ago I called the toll-free number Mr. Z's company provides for its employees, for a health advocate service.  The person I first spoke to was very enthusiastic and sure they could sort out the mess and help me get coverage for my botox treatments.  She then transferred me to a nurse who listened for a few minutes and then told me that I should not be calling the health advocates, I needed to file an appeal on my own, and ask my doctor to write a letter for me, and if my appeal failed, then I should come back to the health advocates and maybe they could help me then.  A week later the nice person I first spoke with followed up by email to ask why I had not filled out the paperwork she sent me and I told her about my conversation with the nurse.  Oh no, she said, we can surely help you out!  Who am I supposed to believe, the phone screener, or the nurse who essentially told me to get lost?  What does this health advocate service actually do?

What good does it do for my neurologist to employ someone full time to work with the insurance companies on trying to get approval for botox coverage, if that person doesn't even know anything about the patients on whose behalf she is working?  When I first talked to this person, she didn't know that I'd had a migrainous stroke, and she seemed unaware that my previous insurance company had paid for my botox treatments.  When I tried to explain what I did to get approval from my previous insurance company and offered to help in any way with putting together my file for this insurance company, she was uninterested.  I feel like, I am just a patient, what could I possibly know.

What good does it do for the FDA to approve botox treatment for chronic migraine, if all the insurance companies then just drag their feet and stonewall as much as they possibly can to prevent anyone from actually getting coverage?  It's not like they didn't know this was coming.  I'm sure they all knew well before the FDA decision that it was likely to be approved, and the approval was issued in October last year.  And as of the first of this year, the insurance companies were all still claiming that they hadn't figured out how they were going to cover botox, what kind of coverage they were going to offer.  Seriously?  That's how you run your business?  You wait till the last minute and make it up on the fly?  Pardon me if I don't believe that.  That $1200 I had to pay out of pocket in February is a crime.

And I just can't afford it anymore.  So until the paperwork nightmare gets sorted out, no botox for me.  I just have to deal with the increasing pain and fatigue.  And I just have to hope that I can manage to get it sorted out by June 16.

Or maybe my non-existent Medicare will pay for it.

I guess I'd better stop ranting and get going on those phone calls.  The best health insurance in the WORLD! doesn't work itself out on its own.

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Song I Am Feeling Today

Apr 10 2011 Published by under Daily Struggles, Naming Experience

Apparently you can't embed it.  But follow the link and find the song I am feeling here.

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