Sickie-Poo

by RhodesTer on September 21, 2009

in NOT Humor/Satire, The BEST of tRc

Dave and Dorian in the desertThis is about my wife.

Dorian.

Aka coffeesister.

She’s a sickie-poo.

She’s been that way for years; so much so that I hardly notice anymore. We take it for granted around these parts.

Now, lest you think this is going to be one of those posts where someone rambles on ad nauseum about their ailments, fear not.. I detest those and don’t want to go there. No, I just want to talk about how much fun I have living with someone who can barely function.

It’s a barrel of laughs.

Like that time we were at Target and she finally gave in to using one of those electric cart things. Up until then she’d just walk around the store, slowly and laboriously until she’d shake from pain. She confided in me that she didn’t WANT to use the electric cart because of what it meant; that her health had deteriorated to such a state that walking around for an hour was no longer possible.

She’s not obese – she’s really kind of a waif for 5′10″ – so it’s not like when you see heavier people using these and you know they’re doing so because it must be sheer agony to put all that weight on those frail knee joints.

No, she looks just fine. She doesn’t look like she’d need that cart. She knew this, and was concerned about people judging her. “Screw them,” I said. “If you’re in that much pain then just use the damn cart.”

So she did.

cart

It was delightful when we got over by the electronics section and she had some trouble maneuvering. She was a first-time user and getting the hang of the handle-bar switches was a challenge.

Ask the flashlight rack she ran into.

“Are you having fun, dear?” The lady behind the counter kind of glared when she said it, as if Dorian was having a blast running into things like a rampant adolescent. She glanced in the lady’s direction.

“Excuse me?”

“It would just be preferable if you didn’t play with the electric carts.”

Here I thought that the concern about people judging her was a figment of her imagination. Surely nobody really CARED if she used a stupid electric cart to get around the store. I guess I was wrong.

I follow this blog called The Deal With Disability that’s authored by a 26-year old woman named Eva, who happens to be disabled by cerebral palsy.

You wouldn’t think so, but it’s a friggin’ hoot.

Eva doesn’t walk or talk, and she requires an aide or someone to be with her most of the time to assist with basic functions that most of us take for granted. Her writing is spectacularly funny as she points out the silly attitudes that most people have as she encounters them throughout the day.

She attached a clandestine video-cam to her wheelchair to record odd encounters, which she then posts on her blog. A lot of them are reminiscent for me, as my first girlfriend had CP. She could walk, so she wasn’t nearly as afflicted as Eva is, but I remember the stares, the comments and the misunderstandings that are exactly what Eva endures. It seems as though part of the time she’s invisible and when she’s not, she’s misunderstood.

Eva has a great sense of humor about it all and twists every encounter into a nice pitcher of delicious lemonade. Her blog is a worthy subscription.

Eva isn’t sick, but there’s one aspect of her disability that she shares with Dorian, and that’s the invisibility. Although in Eva’s case I think she gets ignored because someone doesn’t want to deal with her, or even look at her (she’s gorgeous, by the way.. so why wouldn’t anyone?) With Dorian, they don’t believe it. She doesn’t have the powered wheelchair and distorted limbs that accompany a lifetime of non-use.

She seems fine.

This occasionally generates accusations of faking, like the attitude of the Target employee, at which I scoff because guess what? I’m her caregiver, and I’m like the worst caregiver in the world. Trust me – she’d rather get up and make her own tea because I never add enough honey. She’d rather do her own laundry because I mix colors with whites and don’t fold properly afterward.

She gets tired of instant soup and pasta with mushroom sauce out of the can.

After nearly 20 years of living together I can say first-hand that she’s not lazy. There’s just not a lot of stuff she can do, like.. almost everything. And she’s been stuck living with this bachelor for years, who has remained a bachelor and just lets her in on it when it’s dinner time.

We’re not quite sure when all of these ailments started, since it all came about so slowly, and we’re not sure what’s going on inside of her because we’re without a diagnosis.

“GASP! WHAT? YOU HAVEN”T BEEN TO A DOCTOR?”

Yes, dammit. I mean no.. we haven’t.

Well yes, we have.. but.. no.

Some years ago she went to a doctor who offered to NOT diagnose her, saying that if she did then Dorian would not be insurable. We paid for that series of visits out-of-pocket with what little money we had at the time, and the doctor warned us that should she be diagnosed it’d be a pre-existing condition. She went on to say that she’d probably not be insurable anyway, given that any insurance company might want a physical or at least to ask her a slew of questions that would point to her malady.

If she answered truthfully – no insurance. If she lied and was found out – well, we just won’t go there.

So the doctor said something about Fibromyalgia and Chronic Fatigue Syndrome and getting plenty of vitamins with a yoga regiment, and that was the last doctor to say anything about it.

I remember the first accusation of faking. It came around at about the same time we were seeing the doctor, and it was from the mother of a close friend. Now, this friend reads my blog.. and she loves her mom.. but I know SHE knows that her mom can be a piece of work most of the time, and that’s putting it nicely.

Her mom is a society lady. If you’ve ever seen Gilmore Girls, think of the character of the grandmother, Emily Gilmore, who was played by a fabulous actress named Kelly Bishop. Emily Gilmore was judgmental, spoiled and self-centered.

Just like our friends mom, who I’ll call Raquel.

So we’re all out to dinner one evening, and it’s a group event. We were involved in this theatrical production with our friend and at the dinner we could bring friends and relatives, so she brought her parents. We ended up at the same table, where somehow the subject got around to Dorian’s health problems. Dorian was stage-managing the production but barely getting through it, being plagued by blinding headaches.

“Why is this happening? What’s wrong with you?” Raquel hammered at her, as if she’d been a drug addict for years and refused to put down the crack pipe. Dorian hesitated before answering, “Well, we went to a doctor who said it was Chronic Fatigue Syndrome complicated by Fibromyalgia, and..”

“NONSENSE!” Raquel was adamant, and spoke with a pious authority. “There’s no such thing.. what kind of doctor is this? It’s all in your head. You need a Psychiatrist, not a medical doctor.”

We moved to another table and decided not to talk about Dorian’s ailments, or talk to our friend’s mom ever again.

She didn’t understand the world we live in – uninsured, living from one small paycheck to the other, taking what we can get here and there as opportunity comes along. A Psychiatrist is out of reach, even if that’s what’s really needed. I’ll concede that I could probably use one but I know for sure that Dorian has tiny nanobots ripping her apart inside.

I see the results all day long.

Raquel didn’t understand that we live in American poverty, which isn’t quite as bad as, say, Nigerian poverty, but it does mean that if you can’t afford a doctor or health insurance then you’re pretty much screwed. Unless you get hit by a bus and they take you to the emergency room, where they’ll just treat your bus accident injuries and not your twenty year onset of Chronic Fatigue Syndrome that’s complicated by Fibromyalgia.

Raquel’s not alone in that – few seem to understand.

I’ve had various jobs over the years and Dorian even held the position of a video-store manager for a short while, but insurance has always been priced out of range for us, even when going through employers, plus there’s that whole pre-existing condition thing. I can just see paying eighty bucks a month to get her on some kind of plan, only to have them refuse to treat her because all of her symptoms have been around for years.

This is turning into a health insurance post, and I feel kind of sneaky about it. I didn’t really mean for it to, but let’s look at these symptoms..

1. Chronic, debilitating pain, all of the time. She only showers about once a week because it hurts too much.

2. Blinding migraines that get demoted to simple headaches on good days.

3. She used to be able to walk down the detergent aisle of a supermarket, but no more. The chemical sensitivity causes her to blackout from the fumes of numerous detergents and cleansers, even though they’re packaged and bottled. She gets quite wobbly when near an aisle like that, and I’ve found her collapsed on the floor of more than a few supermarkets.

4. Inability to think and process thought. Lack of memory. Lots and lots of neurological stuff going on. Mistaken identity, misappropriation of memories, nightmares on the rare occasion she can manage to fall asleep.

5. Inability to walk for more than twenty minutes, and that’s with a cane. Too much pain.

She’s 40, folks.

Ten years ago she had all of these symptoms at about half the strength they are now, which leads me to believe that in another ten years it will all be doubled.

I don’t think she can take that.

So yeah, I guess I’m saying she won’t last another ten years if something isn’t done.

gothdoll

I’m not a politically minded guy. I detest politicians and their issues, and I refuse to engage in debates over these things. People get really silly, like a longtime friend who we’d reconnected with on Facebook who said that we don’t need health insurance because we can go to any emergency room and be taken care of.

Another friend, whose blog addresses christian issues, asked his readers about their thoughts on health-care. One person actually said that everyone – believers and non-believers alike – should just head to the local church and get anointed with oil while having the church elders pray for them. I’m really hoping that guy doesn’t happen along someday if I’m ever in a horrific accident and pour oil on my head as I scream in torment with shards of glass piercing my eyeballs.

A lot of people get really stupid.

There’s Judy, who runs the gift shop at the hotel where I used to work. She’s not “pour oil on your head” stupid, but she was always full of suggestions when it came to Dorian. She’d ask, “So how’s your wife?” and I’d tell her she was the same, and Judy would suggest this and suggest that until I finally had to ask her one day to stop suggesting things. She meant well, but it was all useless.

This is why I don’t talk about her ailments. People have all kinds of suggestions, most of which are worthless, and they ask me all kinds of questions that I can’t answer. I’m a bottom line kind of guy, which means that all I know is she’s sick, she has been for years and there’s not a damned thing I can do about it except try to get the honey in her tea right and fold her tops so they don’t wrinkle.

Okay Rhodester, so if you “don’t talk
about her ailments,” then why this post?

Health care is a BIG issue right now. Probably the biggest it’s ever been. That being said..

I find it odd that I can go to a post office and send something to someone in New Jersey for under forty cents.

I can go to the department of motor vehicles and get a license to drive for a minimal fee.

If I don’t file my taxes, federal agents come after me and make all kinds of fuss about it and put all kinds of effort into coercing me to do so.

But I can’t walk my sick wife up to a doctor and ask that she be taken care of, because I can’t afford it.

There’s all kinds of talk about how people shouldn’t have to lose their houses and/or cars to take care of someone who’s sick. I agree, but I’m not worried because I don’t have a house or a car to lose. I don’t have anything.

Just a sick wife and no clue.

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{ 50 comments… read them below or add one }

1 Lorna September 21, 2009 at 5:12 am

this is a heart-wrenching post. All the time I’ve been thinking about Dorian and being distressed, I haven’t been thinking about how this affects both of you. I often mumble about how unfair it is that I’m healthy and live in a place where health insurance is a right and you guys are down there without insurance, but I’ve never heard the effects of that spelled out so clearly. I can’t remember a time without health insurance, as we got universal care sometime in the 50s, and I take it for granted, but I do remember the relief my parents felt, and the gratitude expressed for all the hard work Tommy Douglas had done to get the plan accepted. I pray that sense and empathy will be brought to bear in this issue for you guys. XX

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2 RhodesTer September 21, 2009 at 9:47 am

Imagine this scenario, Lorna, if you can. It’s a true story..

While working at the hotel last year, I got a call out to the pool area that a young woman had slipped and hit her head on the concrete. When I arrived she was lying immobile on her back with a small pool of blood that had issued from the back of her head. She was conscious and crying in pain. I called 911 and kept her still.

Her parents were in their hotel room and had come down in a panic after her sister ran up to tell them about the accident. The mom was hysterical and kept shouting, “Oh my god, my baby, please help her,” etc.. the sort of thing you’d expect. The father, on the other hand, told her to “stop playing around and get up.”

He was so insistent with that I finally had to physically confront him and push him away from her. I said, “Sir, I need you to remain calm and most importantly, I need your daughter to remain absolutely still until the medics get here and take over.”

He complied at that point.

After the medics got her immobilized and into the ambulance (her mom and sister went to the ER with her,) the father approached me and apologized for his behavior. He explained that he’d been unemployed and that the family wasn’t on a recreational trip, but they’d come up to spend one night because they had his sister’s funeral in the morning.

He said he’d paid for their hotel room in cash and had “maybe enough for gas to get back to Los Angeles after the service the next day.” He said he’d planned on asking relatives to help him out with that.

He went on to say that his daughter had just turned 18 a few months before and was off of his insurance, so the thought of whatever this would end up costing him had sent him into a panic. I told him that the hotel carried insurance, of course, so that her emergency treatment and transport would be covered because the accident had happened on hotel property.

He said, “Sure, but then what?”

Even though I certainly don’t agree with him accusing his daughter of faking at the scene and trying to make her get up, he had a point.. what if she needed ongoing care as a result? They’d have to win a lawsuit to pay for it.

Sure enough, she did. I know that months later the hotel’s insurance carrier went to court with them over it, but I don’t know the result. I heard she needed extended therapy because although her head had just been lacerated and she had a slight concussion, her neck had been seriously injured, which I’d suspected at the scene.

Welcome to America, where a father worries “what it’s going to cost” when his daughter takes a serious fall. Nobody should worry about the cost, but that’s what we have here.

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3 HeadacheSlayer September 27, 2009 at 10:56 pm

LOVE the addition of the song. I ran out and got that album after hearing that song (I think his wife has lupus).

And speaking of the pool incident–I’m working on a post on my blog. I fell at what used to be a national chain–they claimed full responsibility. But they filed for bankruptcy so I get nothing–and will have permanent damage. So I get that father’s feeling, and how wrong it is.

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4 awessendorf September 21, 2009 at 5:55 am

The personal makes it real. I hope many read your post and finally have that “aha!” moment.
.-= awessendorf´s brilliant blustering.. Ennui you old bastard =-.

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5 RhodesTer September 21, 2009 at 9:47 am

Me too, Awesome Dwarf.

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6 Scott September 21, 2009 at 6:07 am

I’d say that this fuckin’ sucks, but you already know that. Love you both.

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7 RhodesTer September 21, 2009 at 9:49 am

Thank you, “friend who has a blog that addresses christian issues.” You’ve been a voice of reason from that otherwise unreasonable and senseless camp. You and Christopher are really the only two I know who ever make any sense and show a modicum of rationality.

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8 Scott September 21, 2009 at 10:14 am

I thought that might have been me. ;-)

There are a few of us out there, but we’re underground.

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9 RhodesTer September 21, 2009 at 10:17 am

I don’t blame you. You need to hide from the pitchforks and torches.

That guy’s comment was actually on your FB notification about the health care post. Brad, if I remember correctly.

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10 Judy Curran September 21, 2009 at 6:15 am

So many people living in so much pain – and so many in pain watching it. You are right most people can’t possibly fathom it .
I’ve been there without health insurance and three babies – all the while thinking that if I still lived home, in England, things would be different. Vexed is a word I would use to describe when folks talk about losing their choice of the doctor! What? There have been times when I would simply be happy to have a doctor – any doctor. Yes… in England we have to wait longer for procedures, but we were still cared for. The British moan and complain about the National Health – and yes it needs help, but really…. live here and try to live without it. Thankfully I currently am able to pay for my health insurance, but with a HUGE deductible – I still rarely go when I need to.
Must have been a challenge to write about this…. how the hell you managed to keep from delving into the depths of despair with your words but still getting the point acutely across is partly what I’ve come to respect so much about your writing.
I really hope help is on its way…..

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11 RhodesTer September 21, 2009 at 9:52 am

What good is it to despair? It helps no one, which is why I seldom go there. Oh, I do.. but I fall silent. Those who know me grow concerned during the silent periods for that very reason.

Thanks for the input.

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12 Judy Curran September 21, 2009 at 3:15 pm

Okay so, I was trying really, really hard to be all ‘matter of fact’ this morning and be as brave sounding as you, but the truth is, I’ve not been able to stop thinking about you and Dorian all day and both of your blogs have caused such a range of emotions in me today.
Anger – angry that there is absolutely feck all anyone like me can do.
Sad – incredibly sad that Dorian has to go through so much pain and that you have to witness it.
Disgust – with this health care system
Fearful – that a cure won’t be here quick enough
Joyful – that folks like you and Dorian are here and can write about it so that hopefully it can be loud enough for everyone to hear.
The way you view everything …gosh so incredibly – admirable? NOT the right word (NOT a writer am I)…admirable sounds a bit pompous which is soooo not you…..
Your blog started out as a place for me to go to chuckle – it still is….and I thank you so much for that – most of all though, you really make me think, and help give me the words I’ve been trying to say for so long especially to my (grown) children. I’m so very grateful to have stumbled upon the two of you.

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13 Leann September 21, 2009 at 9:54 am

Dorian should be eligible for Medicaid and disability which should earn her Medicare benefits. Most disability atty’s will take the case on a contingency basis. I understand I do not have the whole picture but if she can’t work, is in constant pain, there should be a benefit from the State of CA. That’s how it works in Oregon. Something you’ve looked into?
.-= Leann´s brilliant blustering.. Hard Questions =-.

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14 RhodesTer September 21, 2009 at 10:57 am

Leann, I’m getting a LOT of comments on this post this morning and am answering all I can, but I’ve held off on yours because it’s not quite that simple. I’ve decided to let Dorian address it when she gets online later.

Thanks for dropping in.

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15 Grandad September 21, 2009 at 10:44 am

Aw shit but my heart goes out to you both!

Herself has the same problem for the last twenty or more years [she's in her sixties now, but I didn't tell you. OK?]

We too have been down the same paths -
People not believing that it’s a “real illness” and that it’s all in the mind.
Doctors being sympathetic but saying there is little they can do.

We have met our fair share of Raquels.

My only advice is to keep fighting it. Herself walks when she can, and pushes herself that little bit, as she is scared that to take the wheelchair route would lead eventually to muscle weakness and a general worsening of the situation.

Our “health service” in Ireland is currently being rebuilt by a morbidly obese “health” minister who has stated a few times that she wants to model the Irish system on the American one. She has reduced the public health system to such an incredible state of disrepair that private insurance is the only way. It’s that, or days on a gurney waiting in corridors for a bed where you are more than likely going to catch MRSA to add to the fun.

Herself gets a lot of good advice from various forums around. Her favourite [which she has asked me to pass on, along with her best wishes] is http://fmsni.org. It’s based in Northern Ireland where the healthcare system would make us weep with jealousy, but the ideas hold good.
.-= Grandad´s brilliant blustering.. Domme =-.

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16 RhodesTer September 21, 2009 at 10:52 am

My GOD, this woman wants to model the Irish system after ours? Is she fecking INSANE? That’s like seeing a broken-down AMC Gremlin go limping by and sighing as you say longingly to your friends, “There goes my dream car!”

Thanks for the pointer, and best wishes to herself and yourself.

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17 Grandad September 21, 2009 at 11:11 am

Woops! My mistake – should be http://www.fmsni.org.uk/

Yes – Mad Cow Harney says she would “rather look to Boston than to Brussels”. She is pouring billions into a system that is quite literally fatal to get involved with, yet is closing hospitals at a rate of knots due to lack of staff. The money is all being swallowed by an incredibly complex administrative system.

Yes. She is insane.
.-= Grandad´s brilliant blustering.. Domme =-.

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18 RhodesTer September 21, 2009 at 11:14 am

Sucks to be a sick Irishman (or woman) at the moment, eh? Just like here.

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19 Tara September 21, 2009 at 11:28 am

I have been down all those roads…and am still traveling them. I am a 33 year old female with Fibro, severe endometriosis (19 surgeries so far) and a myriad of mental health issues. So I am one of the “healthy looking” sick people. I only recently myself started using those electric carts…and the looks I get are priceless! I am EXTREMELY lucky that my husband has insurance through his work, but it is not cheap. We, of course, also live paycheck to paycheck. I understand why it would not be easy to get disability/medicaid/etc. I have applied, and now it is 2 years later, and I have been denied twice. I haven’t been able to work for almost 3 years, and I have been fired from almost every job I’ve had because of my problems.

I’m not sure where I was going with this…but I will keep you guys in my thoughts.

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20 RhodesTer September 21, 2009 at 11:33 am

It’s okay Tara, there’s always an odd comfort in just knowing you’re not alone in a mess. Thanks for your comment and I hope things get better for you.

Side note – what if your husband loses his job? It’s ridiculous that your care hinges solely on that.

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21 Jeanne September 21, 2009 at 1:32 pm

Dave,

It’s hard to know where to start replying to this post because I have so very much to say.

I have had the honor of being connected with your wife, Dorian, for some time now on twitter. I got to know here there as @coffeesister.

Dorian and I first connected when we were harnessing the power of twitter to advocate for causes we believe in. She and I both participated in a campaign tweeting for awareness of ME/CFS (myalgic encephaloyelitis/chronic fatigue syndrome).

Since then, Dorian and I have connected really strongly on a variety of issues (some health-related, some not). Most recently, she and I have become very concerned regarding the issue of health insurance… which I will elaborate on it in a minute.

First, I would like to admire this post as a love letter of sorts to Dorian.

What do I mean by that? Let me try to put it into words this way…

My husband and I have been together for 13 years and married for 11 of those. I was chronically ill long before I met him but nowhere near as ill as I am now. My health has deteriorated immensely in the last few years, due to multiple chronic illnesses. Almost all of my illnesses are the sneaky invisible type referenced here.

Like Dorian, I am 40. Like Dorian, I have a husband who loves me very much. It hurts him to see me in pain. It pains him to see people misunderstand my illnesses, dismiss me, think of me as someone who’s “just exaggerating”, etc. It hurts me but it hurts him too.

I know the toll chronic illness and pain can impose on the strongest of marriages. As a volunteer endometriosis support group leader for 7 years (locally), I saw many marriages split up. In participating in support groups from 1992-2008 on a monthly basis, I heard many stories of the strain, hardship (emotional and financial), and hurt that chronic conditions can put on a marriage.

I see this post as a love letter for a few reasons. One, for a husband to take the time to write such a sensitive, thorough, heartfelt post on such an important topic and for the overriding message that emanates from it to be his love, concern, and feelings of helplessness regarding his wife’s serious health problems is, to me, a love letter.

The way you have captured just how sick Dorian is and just how little can be done do to address her symptoms via the current healthcare system in the United States, etc. was very touching to me (particularly so since I know information which Dorian has shared with me that is not mentioned in this post that makes this post even more moving).

Like you, I do not wish to see the issue of health insurance politicized. This matter, in my humble opinion, is about human rights. No one should have to go without basic healthcare because they can’t afford care. No one should be denied coverage due to pre-existing conditions. I won’t get into a detailed commentary here regarding health insurance beyond what I have already said.

Regarding this post, I laughed when I read the part about the electric shopping cart. When I first developed neuropathy, and before it had been properly diagnosed and treated… my feet got so bad that I was physically unable to stand on the (linoleum) floor in front of the bathroom sick long enough to properly brush my teeth. I kid you not. The pain in my feet was so unspeakable that I physically couldn’t stand up that long. (You do what you need to do and I quickly learned that the vast majority of time one spends brushing his/her teeth can be done while seated. So I took to having a “spit bowl” and sitting on a stool in front of the sink because I needed to brush my teeth somehow)!

Sorry. I digress. The point I’m leading up to is that I have used electric carts for grocery shopping. Now that my neuropathy is diagnosed/treated, I no longer find the carts necessary because the pain, while still severe, has improved somewhat… but when I needed them, I REALLY NEEDED THEM. To make a trip into the store for 3 or 4 dinner items required an electric cart then.

Like Dorian, I was aware of the reaction I might get using one. In my case, I had my young daughter on my lap (which was no small feat). This added to my anxiety that people might mistakenly think I was abusing the carts to “give her a ride” or “be lazy”. Some people were very nice and hurried out of the way. (Those things are hard to drive)! Others gave me dirty looks. As upset as I was that I even had to think to myself for a nanosecond, “I wonder what people are thinking?”… I DIDN’T CARE because I knew I NEEDED that cart no matter how healthy I looked.

My husband was working terribly long hours (which made me feel guilty since my career went up in smoke due to my illnesses). I wanted to at least grab a few items needed to make dinner so that my poor husband wouldn’t have to stop at the store on the way home from his 14 hour day to buy groceries. (Then, he’d log in from home after dinner for several more hours of work). So I did what I needed to do to get those groceries…. dirty looks at me for using that cart be damned!

Any chronically ill patient can almost surely tell plenty of “Raquel stories”. This is a common phenomenon. It is unfortunate that patients who are already suffering are so often subjected to this sort of unsolicited “commentary” from people who think they have a clue but, sadly, really don’t.

As far as the symptoms you mentioned, I can relate to many of them. Showers have become quite an ordeal for me. First it was the fibromyalgia pain in my arms making it impossible to wash my own hair. (My husband inherited that duty for awhile). Then I was so dizzy I bought a plastic shower chair to sit on because I took several falls in the shower but couldn’t take baths at that point due to a different, serious health problem. Lately, my biggest problem with showers is summoning the energy to take one and dealing with the dizziness that they bring on.

I too have fainted on numerous occasions following exposures to everything from detergents/soap to “air fresheners” used in public rest rooms (you know… the ones that spray carcinogens, endocrine disruptors, and neurotoxins on people)?

I can also relate to cognitive and sleep problems. I used to (happily) walk for exercise. No longer. My feet are not like they used to be.

I love the way you worded this part, “there’s not a damned thing I can do about it except try to get the honey in her tea right and fold her tops so they don’t wrinkle”. This is part of what I meant by “love letter”. It is very obvious that you love Dorian very much and that it HURTS you to see her suffer. I know how much it HURTS my husband to see me suffer. Caregivers (for lack of a better term) in a marriage involving chronic illness have a great deal of stress on them.

Your last 8 paragraphs gave me chills, made me cry, and made me determined to distribute this link as widely as I can. To me, the bottom line… that you have to stand by and watch as your very ill wife goes without healthcare… really sums it all up. I communicate with Dorian online almost daily now. I know how very, very sick she is.

Another reason I am teary-eyed is this exact portion:

“There’s all kinds of talk about how people shouldn’t have to lose their houses and/or cars to take care of someone who’s sick. I agree, but I’m not worried because I don’t have a house or a car to lose. I don’t have anything.

Just a sick wife and no clue”.

Wow! Instant tears…

In my family, thanks to medical bills WITH insurance, we almost lost our house three times (the 3rd time it was in actual foreclosure where we had been sued by the bank but we got enough money at the 11th hour and managed to hang onto the house). I know that ALMOST losing your house and LOSING your house are two different things. (I almost felt guilty telling Dorian about our house experience when she shared what you’d been through).

I also feel silly mentioning that I lost my car (once the medical bills made it impossible to afford to keep it)… because I know that being without a car was a short-term situation for me and is not for you (since you still don’t have one).

So why do I mention these things? I guess because when I read what you said, it reminded me that I have had this comment posted on my Facebook status for some time now, “thinks that no one should die because they can’t afford healthcare and that no one should go broke because they get sick. If you agree, post this as your status message today”.

As frightening as it was to me when we had three close calls for losing our house and I lost my car and much more, we didn’t actually lose our house and I have since gotten a car (albeit an older car than what I had before I lost my previous car).

What I’m trying to say is that I think I understand better than some just how precarious just about EVERYONE IS in the current system because of what I have experienced. (Most people are in far more precarious a situation than they may realize… my family has seen how quickly a simple layoff can domino effect into so much more because of how healthcare is set up now)… BUT I do not pretend for a moment to understand how it feels to be Dorian or you… where she is so sick and you two have no insurance.

I know how hard it is for me WITH insurance and WITH definitive diagnoses/treatments. I cannot fathom what my life would be like without health insurance. In fact, in the last few years… my husband and I have increasingly found ourselves obsessed with our health insurance situation before any other bills. (For example, if the health insurance premium were due tomorrow and the mortgage were due tomorrow and we didn’t have enough for both, we’d pay the health insurance on time (because I can’t be without health insurance and have too many pre-existing conditions documented to count) and we’d have to work things out with the bank as soon as possible.

If health insurance is not paid on time, they can easily (and will) drop people… no grace period, no warning, nothing like that. Whereas with the bank, we have some breathing room.

It’s all a warped system if you ask me. I believe we need healthcare reform.

Jeanne
.-= Jeanne´s brilliant blustering.. Bladder Instillations Rock! =-.

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22 RhodesTer September 21, 2009 at 1:54 pm

Good grief Jeanne, get your own blog!

Kidding – thanks for your carefully thought out input and correct spelling of pre-existing condition. I’m adjusting accordingly.

As I mentioned to someone already, it’s always comforting to know someone’s in the same boat, even when it’s sinking. Now if we can just figure out a way for you to share that life-jacket you have on.. :-)

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23 Elizabeth September 21, 2009 at 3:16 pm

What an incredible post! To hear it from the caregiver’s point of view and see how much love you have for her and how much angst at not being able to do anything about it..

As a multiple chronic illness sufferer, I am in the same position a lot of the time as your wife and understand completely. I know my husband loves me and cares for me greatly and is an awesome caregiver – he’s a great cook and makes my tea better than I do – but it’s awesome to hear another caregiver husband and it helps me understand some of my husband’s frustrations – that they aren’t with me – they are with this world we are dealing with that doesn’t understand.

Thank you SO much, from the bottom of my heart.

And I’ll share your comment that is always comforting to know someone’s in the same boat. However, I hate to hear someone else’s pain – but I don’t want to be alone, then I would be crazy – if I’m not already from all the pain.
I am thankful I do see a therapist to help me through and that I do have health insurance, although still out of pocket costs are breaking me financially. As well as worry that I may lose my job and if I do, I’m uninsurable and even with insurance, they like to deny some of my needed treatments and meds.

I feel for you both – thinking about you, praying, and writing my congressman.

Elizabeth
.-= Elizabeth´s brilliant blustering.. 30 Things About My Invisible Illness You May Not Know =-.

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24 RhodesTer September 21, 2009 at 9:22 pm

Would you consider getting a place with us? You have me sold on your husband’s ability to cook and make great tea.. he’s got one up on me. :-)

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25 Sherril Johnson September 21, 2009 at 4:31 pm

I’m in a similar position to your wife’s, but I live with my mother who is willing and able to support me until I’m approved for social security disability. I’ve done a lot of research on SSD for people with invisible chronic illness. Please contact me if you would like a list of good links. This article is the one that convinced me to file, and it seems like it might be appropriate for your situation now: http://www.scottdavispc.com/articles/16-Not-Filing-Disability-Claim-Financial-Disaster.htm.

My thoughts & prayers are with you both.
.-= Sherril Johnson´s brilliant blustering.. Disability vs. Chronicity: Bloggers Unite for National ICI Awareness Week =-.

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26 RhodesTer September 21, 2009 at 9:23 pm

Thanks. I’ll leave that to Dorian to follow up on.

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27 Aviva September 21, 2009 at 4:49 pm

Wow! I found this post (and your blog) thanks to Jeanne’s tweet and Facebook update, and I follow @coffeesister on Twitter too.

Like Dorian, I don’t have a diagnosis, although it’s not for lack of health insurance or seeing doctors. I also have the experience of well-meaning folks who think that it must be a psychological problem since I’ve been sick for 2 years now and still don’t have a diagnosis.

I also have used those scooters at Target or Costco — they’re a lifesaver. But the looks are depressing, so I find myself going to those places less and less often because I can’t shop without a scooter and yet I hate feeling judged when I do. (Unlike Dorian, I’m not remotely waifish and I figure most people think I’m using them because I’m fat. But really, I’m fat because I’m sick and have chronic pain problems.)

One thing worth noting, I hope: pre-existing conditions are only a problem for individual health insurance policies. If you get a policy through an employer, you’re covered entirely (and so is Dorian as your spouse). Because you guys have gone without any insurance, I think it might take 12 months for those pre-existing conditions to be covered, although I’m not sure since I’ve been lucky enough not to be in that position. I’m crossing all my fingers and toes that some form of universal coverage is available Very Soon (but I’m not holding my breath …).
.-= Aviva´s brilliant blustering.. Patients For a Moment! =-.

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28 RhodesTer September 21, 2009 at 9:27 pm

“Not remotely waifish”.. I like that, it’s quite funny! You have a pretty good sense of humor about it all. Cross your fingers all you want but please be sure and uncross your toes before getting off the scooter.. liabilty, you know.

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29 J September 23, 2009 at 8:34 pm

I hope you don’t mind me jumping in here… but in reply to Aviva that’s not actually true in all cases…. due to my lupus I can’t get insurance through my husband’s employer… they aren’t covering me…. He has a pre-existing condition and just had to wait the 12 months to have that covered… but they won’t touch me. :(
.-= J´s brilliant blustering.. Nesting? =-.

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30 RhodesTer September 24, 2009 at 1:59 am

Yeah, my last employer had NO spousal coverage. Just me.

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31 Aviva September 24, 2009 at 4:17 pm

They’re definitely not required to offer family/spousal coverage, or even cover employees.

But it was the HIPAA guarantees that I was thinking of:

Quoted from http://www.dol.gov/ebsa/faqs/faq_consumer_hipaa.html:
One of the most important protections under HIPAA is that it helps those with preexisting conditions get health coverage. In the past, some employers’ group health plans limited, or even denied, coverage if a new employee had such a condition before enrolling in the plan. Under HIPAA, that is not allowed. If the plan generally provides coverage but denies benefits to you because you had a condition before your coverage began, then HIPAA applies.

Under HIPAA, a plan is allowed to look back only 6 months for a condition that was present before the start of coverage in a group health plan. Specifically, the law says that a preexisting condition exclusion can be imposed on a condition only if medical advice, diagnosis, care, or treatment was recommended or received during the 6 months prior to your enrollment date in the plan. As an example, you may have had arthritis for many years before you came to your current job. If you did not have medical advice, diagnosis, care, or treatment – recommended or received – in the 6 months before you enrolled in the plan, then the prior condition cannot be subject to a preexisting condition exclusion. If you did receive medical advice, diagnosis, care, or treatment within the past 6 months, then the plan may impose a preexisting condition exclusion for that condition (arthritis). In addition, HIPAA prohibits plans from applying a preexisting condition exclusion to pregnancy, genetic information, and certain children.

If you have a preexisting condition that can be excluded from your plan coverage, then there is a limit to the preexisting condition exclusion period that can be applied. HIPAA limits the preexisting condition exclusion period for most people to 12 months (18 months if you enroll late), although some plans may have a shorter time period or none at all. In addition, some people with a history of prior health coverage will be able to reduce the exclusion period even further using “creditable coverage.” Remember, a preexisting condition exclusion relates only to benefits for your (and your family’s) preexisting conditions. If you enroll, you will receive coverage for the plan’s other benefits during that time.
—–
So the good news is that since Dorian isn’t currently being treated for anything, if you were able to find a job that offered insurance coverage for spouses, they can only look back 6 months. And I don’t know — clearly J’s husband’s insurance plan found a way to refuse her coverage, but my reading of the above sections suggest they shouldn’t have been able to for more than 12 months, assuming they allowed other employees to enroll their spouses. :-(
.-= Aviva´s brilliant blustering.. Patients For a Moment! =-.

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32 Aviva September 24, 2009 at 4:09 pm

Damn. I stand corrected. :-(

My brain isn’t working today, but I could have sworn there was a federal law passed (maybe during Clinton’s presidency?) that required insurers to waive pre-existing conditions on group policies as long as the person/people hadn’t had a lapse in coverage.

Damn. Maybe it was wishful thinking on my part … :-(

Apologies for the misinformation! And again, here’s hoping our lawmakers do the right thing and create a public policy as well as mandating universal coverage!! And soon!!!!!

(Sorry for the overuse of exclamation marks … it’s just a topic I feel so strongly about!) :-)
.-= Aviva´s brilliant blustering.. Patients For a Moment! =-.

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33 Nicole September 21, 2009 at 5:37 pm

I suffer from massive pain via Endometriosis… I’m constantly getting suggestions on jobs i ‘could’ do and things i ‘could’ do. how frustrating to hear my family tell me they know i can do it when i know i cant and it hurts to admit it because im only23. I cried the first time I had to give in and use a wheel chair.. im ONLY 23!! ugh.. anyway what I want to say is *hugs* you’ll get the honey right one day.. and honestly.. im sure she appreciates it anyway you make it because you are there for her through everything.

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34 RhodesTer September 21, 2009 at 9:28 pm

Oh, I get the honey right more often then I let on. I have to ask myself “Is this so much honey it grosses me out and gags me?” If the answer is yes, it’s perfect for her.

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35 Mazzle September 21, 2009 at 5:44 pm

Hi there,

This is my first visit to your blog, thanks to a tweet from WAMCARE. I just wanted to comment and let you know how beautiful I think it is. I’m a CFS/ME sufferer, although my symptoms are less severe than Dorian’s. I’m also only 19 and I live in the UK, so my healthcare is provided. I honestly admire everything that the two of you are doing and coping with. No one should have to deal with these things – being sick is hard enough, and whilst my doctors can’t really do very much to help me, I can’t imagine the added strain of not having correct insurance (or a national health service). I’m sorry that this comment isn’t adding anything in particular, or at all, but I couldn’t read your post without letting you know that I found it really moving and offering you some random, foreign, e-support.

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36 RhodesTer September 21, 2009 at 9:30 pm

Whoa, thanks. It’s nice of you to comment even if you don’t really say anything. I write entire posts that don’t say anything all the time.

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37 Dorian aka coffeesister |_|) September 21, 2009 at 6:10 pm

I laughed, I cried, I’m a little less dead inside.. Jeanne’s spot-on that this is a love letter & it does my soul needed good. Dave, as this post well expresses, lives out his love of me daily yet it’s hard not to feel I’ve inadvertently entrapped him thus his perspective so perfectly spelled out proved a welcome reminder. I see my tendency toward alliteration is trying to sneak in so on to the rest of your marvelous perspectives. :wink:

How right you are, Lorna, that it’s empathy which is so lacking in the fight for reform. I can only imagine the majority of opponents content with a status quo that leaves an unbelievable amount of people uncared for despite how hard they work (or have tried to) are pretty damn healthy. I do hope my fellow Americans that want me to stay in this state are clueless rather than callous but how to open their eyes?

Perhaps awessendorf is right, it’s the personalization that’s our best hope. Scott nails it, it does fucking suck, but too many are caught up in their own fears & pressures to realize just how much it sucks & the difference that could be — needs to be — made. As Judy so accurately observes, you’re simply not likely to get it unless you’ve been there. Her situation also reminds us that even those with insurance are suffering a lack of healthcare.

Whereas many British bemoan the NHS without appreciating what they have, too many Americans let pride of country blind them to our flaws, confusing dissent with being unpatriotic. Our law-makers tend to do the same or take advantage of that inclination. What made Ted Kennedy such a rarity, besides his convictions & willingness to stand behind them, was his understanding that the average family is struggling to survive.

Speaking of how our system works — or doesn’t, as the case may be — & the struggle to survive, Leann brings up an oft-mentioned “option.” Despite being disabled, I’m not. To be legally considered disabled, one must have a provable history of their disability. It would need to be documented which would require a diagnosis or, at the very least, treatment which, in turn, requires healthcare &, well, surely you’re getting the picture.

Questions of aid aside, beyond what we’ve paid into & have a hard enough time getting, what we want is a means of making a living. While wages are out of wack — a couple shouldn’t need two incomes just to survive — our survival is more fairly contingent on Dave being employed; healthcare shouldn’t be. It’s farcical enough that systematic profiteering has become a standard for healthcare but Grandad sharing that Ireland sees this as something to copy astounds me. Where’s the humanity? Is greed really still winning?! :mad:

I think where Tara was going might be.. We’re not alone, there are no easy answers & even those who qualify for disability don’t necessarily get it. As Jeanne points out too, so many of us live paycheck to paycheck, job to job, setback to setback. Even the employer that’s laid Dave off twice now doesn’t cover spouses so, while income remains our top priority, it may not provide anything more than a roof over our heads. I will gladly start there tho’. :grin:

To be fair, our poverty wasn’t caused by medical expenses since it keeps me from seeking medical care yet my inability to work does help cause the poverty. Would access to care break this cycle? I don’t know but I do know we would certainly avail ourselves of affordable medical options, were they to exist, they simply don’t right now. Imagine a fair monthly premium that actually paid for your healthcare!? While I’m at it, let’s imagine wages that rise instead of the healthcare premiums employers are covering instead. :shock:

Elizabeth hits on something crucial. The need for reform is no doubt most evident with those of us enduring chronic illnesses yet few, beyond our ilk, really see — much less understand — what we’re facing or how the current system affects us. Hearing from the caregivers is rare, rarer still on mainstream blogs, so share the Hell out of this post & let’s encourage more of the silent heroes, rather than only we silently ill, to write & share!

Finally (for now), a couple clarifications: Just as there is no job for Dave to do at present, there’s no job my condition is currently keeping me from. Regarding Sherril’s kind offer, disability remains a moot point while we’re still unable to pursue answers thus remain without documentation. I’m sure Aviva can attest to just getting diagnosed or recognized as disabled being the first hurdle. As for preexisting conditions, not all all insurance plans or employers are created equal. Insurance itself is as of yet unaffordable but essentially moot too until we can also afford to treat whatever it may prove I have.

Finally, still just for now but for real this time; Nicole’s right, I truly do appreciate the seldom sweet enough tea :eek: & Mazzle mentioned the truest thing of all, “e-support.” I’d, no, we’d be lost without it! I cannot thank you all enough for commenting & cherish each of your insights!! So, again, let’s keep sharing this post in the hope of supporting & possibly even helping all those in a situation similar to mine.

(|_|*cheers*|_|)
“America’s health care system is neither healthy, caring, nor a system.” ~ Walter Cronkite
.-= Dorian aka coffeesister |_|)´s brilliant blustering.. 30 Things About My Invisible Illness You May Not Know (for Invisible Illness Awareness Week) =-.

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38 Diana Lee September 21, 2009 at 11:37 pm

What a wonderful post. As someone with chronic migraines I can easily relate to dealing with naysayers and people who don’t understand something they can’t see. Thank you for writing this. Dorian is lucky to have such a fantastic partner.

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39 RhodesTer September 22, 2009 at 6:03 am

You say that now but you’ve never heard how I carry on when it comes time to clean the bathroom.

Thanks for dropping in.. I can’t imagine chronic migraines. She gets them and doesn’t complain.. much. She’s a trooper. I say that knowing she’d rather be a migraine-free non-trooper than a trooper plagued with them daily.

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40 cinderkeys September 22, 2009 at 1:21 am

Great post. That sums it up.

Well, almost. You didn’t mention the people who say, “I get tired too. What’s the big deal?”

Or the people who imply that the caregiver is “enabling” the sick person.

But otherwise, that about covers it.
.-= cinderkeys´s brilliant blustering.. The music industry eats itself =-.

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41 RhodesTer September 22, 2009 at 6:06 am

Hey, I DO get tired too! And I’ve never been accused of enabling but only because I’m such a sucky caregiver. Seriously, my mother-in-law and those close to us go on about how “wonderful” I am, but I know that they just want to keep me around in spite of the fact that I’m a lazy, selfish bastard.

But I’m modest. I’ll give me that.

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42 cinderkeys September 22, 2009 at 10:03 am

Re “sucky caregiver”:

I am close to someone with ME/CFS. As a result, I’ve read a handful of human interest articles featuring some ME/CFS sufferer. The stories were much the same. The sufferer (usually female) had a great job, great life, and a husband. Then she got sick and lost her job. Then her husband left because he couldn’t deal with her being sick.

One day I came across a web page in which people with various chronic illnesses paid tribute to their wonderful caregivers. One woman said she had ME/CFS, and her partner took care of her … even though the partner herself had lupus (another really awful chronic illness that is similar in some ways to ME/CFS).

And that made me think: Are those the only choices? If someone is thrust into the caregiver role, are the only possible outcomes ditching the sick mate or becoming a saint? If so, no wonder so many marriages end over chronic illness. There aren’t too many saints among us.
.-= cinderkeys´s brilliant blustering.. The music industry eats itself =-.

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43 Laney Landry September 22, 2009 at 8:21 pm

I really don’t know what to say. Your story has touched me deeply. So many people are in the same place and it seems society just doesn’t get it. I watched a movie with Denzel Washington playing the star role just last night. He was trying to get a heart transplant for his little boy and although he had insurance, he wasn’t covered for the $250,000 surgery and he lost it and went crazy. Glad you have held it together and glad you are enjoying and focused on the happy times. My prayers are with you.

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44 RhodesTer September 22, 2009 at 9:49 pm

Yeah, I don’t know what we’d do if something like that happened to either of us.

Thanks for dropping in.

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45 Chris September 23, 2009 at 11:50 am

Very few things irk me more than the attitudes you talked about in this blog. In fact, I just got through ranting about some of those attitudes in my own blog during this past week! There are people like Dorian, whom we care about very much, who are fading away under the current lack of “health-care” in the US, and still so many people are more concerned about maintaining their own political agendas, or their own misguided version of faith, than they are with finding an answer to the problem.

I would just challenge anybody out there who is against the government’s attempts at finding a solution to at least admit that there IS a problem and that SOMETHING needs to be done about it! If they’re insistent that the current attempts won’t work, fair enough, but PLEASE let them respond with an alternative then!!!

When you know someone, as we do, who has fallen between the cracks of the “system” in the way Dorian has, it’s immoral to keep the whole debate at the level of some abstract discussion or to tackle it in such a way as to suggest that it’s more about money than it is about human lives.

Love your blog as always, Dave. This one is heart-wrenching because it gets to the heart of such a burning truth. We dare not call ourselves morally responsible human beings and yet ignore this truth.
.-= Chris´s brilliant blustering.. Does God Use Doctors? =-.

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46 RhodesTer September 23, 2009 at 10:49 pm

Well said, Christopher. Thanks.

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47 queenofoptimism September 27, 2009 at 9:13 am

Your post is so poignant, thank you. I wish I could give you my health insurance where pre-existing conditions are not an issue.

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48 RhodesTer September 27, 2009 at 8:49 pm

There is such a thing? HAHA, thank you..

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49 cinderkeys October 9, 2009 at 1:45 am

I would have posted this in one of your more recent blogs, but it’s off topic.

Have you heard about this?
.-= cinderkeys´s brilliant blustering.. A biomarker, and a bit of vindication =-.

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50 Benia Zouras November 11, 2009 at 4:08 pm

Just sending some love and spoons to you. My sentiments have already been covered in other comments.
.-= Benia Zouras´s brilliant blustering.. Spoons: Lost and Found =-.

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