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Author Topic: Just me offloading  (Read 4994 times)

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Offline MarkB

  • Member
  • Posts: 292
Just me offloading
« on: April 20, 2008, 08:44:28 AM »
Me again.

I am now on my fourth Doctor at the clinic since my diagnosis last year. The first one I saw couldn't take me on to his lists, so I was transferred to a great doc whom I saw twice. She then had to leave the clinic, and transferred me to the Consultant's patient list (it was a looong wait). Before I could get to see him, though, he apparently took a job with a pharmaceutical company and also left the clinic. So I was then transferred to the lists of another doc (and another long wait for an appointment). I turned up on the day to be told she had gone on annual leave. Gosh - they asked - hadn't anyone got in touch with me to let me know? (It's a 250 mile journey to that hospital from where I live, by the way). So they've made another - tentative - appointment for me to see her later on in May. Or is it 'Maybe'?

In the meantime, I have had shingles; my numbers have gone from 600 to 400, and the % from 37 to 20. My cholesterol is 8.6, my blood pressure is 160 / 95 and my glucose levels are 7.6 on a fast. I feel utterly exhausted all the time and can barely drag myself to work, which I am not doing at all well and questions are being asked. I don't know how long I can manage like this.

Sorry to be a pain, but I felt the need to offload. Hope that's OK.

Love to all.

Offline BT65

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Re: Just me offloading
« Reply #1 on: April 20, 2008, 10:27:33 AM »
Oh dear, Aelwyd.  What a time you're having.  I really hope things improve for you soon.

Have you been seen for your shingles outbreak/BP etc.?  Is there any doctor you can see closer to your home?  I would definitely get that list of things checked out asap.  We're here in the meantime.
   Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline dgr20002

  • Member
  • Posts: 288
Re: Just me offloading
« Reply #2 on: April 20, 2008, 10:39:23 AM »
Ael,

That clinic situation is a disaster. I hope you can be seen sooner or if things don't get better you could find yourself in the ER. Feel free to offload as much as you need too.  If work becomes a big issue you may be able to look at going on FMLA (family medical leave act) which you can also use for your own health and well being.

I hope things get better for you.

David

Offline Andy Velez

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Re: Just me offloading
« Reply #3 on: April 20, 2008, 12:00:00 PM »
You've been getting a nightmare runaround for sure. Jeeeeeezus!

Where are you writing from? Have you contacted any AIDS service organization which might be in your area or a reachable distance for you? What you have described is totally unacceptable treatment.

It's important that you have the shingles addressed promptly before it becomes worse. If all else fails to an emergency room in your area and seek treatment.

Keep us posted on what's going on.

Cheers,
Andy Velez

Offline xyahka

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  • Posts: 788
  • Dance together!! aha!! aha!! I like it!!
Re: Just me offloading
« Reply #4 on: April 20, 2008, 12:13:20 PM »
hi, sorry to hear what you have been through, i think perhaps you should insist a bit more and push them to do an exception in your case so you can meet your dr fast. I think you have waited enough.

Wish you the best

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline Assurbanipal

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Re: Just me offloading
« Reply #5 on: April 20, 2008, 01:01:31 PM »
Aelwyd

Been wondering how you were.  So sorry to hear of your difficulties with the clinic when your numbers are in a downturn.  I hope someone from the UK can give you helpful advice about how to negotiate the system over there. 

Hugs
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline bear60

  • Member
  • Posts: 4,104
Re: Just me offloading
« Reply #6 on: April 22, 2008, 11:54:41 AM »
Hi
I just saw your post. I know you are in the UK and that you are caring for a father with altzheimers disease. I hope you found a good facility for him.
I  have been through caring for an aged mother after losing my father to prostate cancer.  My mother died this past October.
I hope you keep in touch with your doctors office and dont let THEM slip up.  Its always possible in a busy office to have mistakes.  If you keep in touch with them more often, by calling or fax or email, perhaps they will be more apt to keep your name where it should be..... at the top of the list.  Just kidding but seriously, the creaky wheel gets the grease.
You treated the shingles right?  Thats been taken care of or are you having another outbreak?

Poz Bear Type in Philadelphia

Offline Dachshund

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Re: Just me offloading
« Reply #7 on: April 22, 2008, 01:20:02 PM »
Hopefully someone from the UK/Wales will be along to offer you some advice. Best I can give is good wishes and good luck.

Hal

Offline newt

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Re: Just me offloading
« Reply #8 on: April 22, 2008, 05:10:05 PM »
Quote
That clinic situation is a disaster.

Indeed....

You will, by rights, have a choice of clinics. It is important you get a doc/clinic you like. 

I would class your clinical picture as fairly urgent, particularly the cholesterol/blood pressure. At a CD4 count of 400 you are approaching the level where new (soon to be released) UK guidelines will recommend treatment.  Since HIV drugs can affect cholesterol and/or interact with anti-cholesterol/blood pressure meds, this points needs addressing. Your HIV clinic needs to be involved in managing this.

Travelling 250 miles...there must be an alternative. NHS staff are paid from taxes and their to serve you, the patient. Being on annual leave without making arrangements for someone else to see you/telling you in advance is just damn unacceptable.

- matt
"The object is to be a well patient, not a good patient"

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Just me offloading
« Reply #9 on: April 23, 2008, 12:03:43 AM »
Hey Aelwyd,

Your situation is intolerable.

That blood pressure is definitely troubling and this continual waiting game is not helping the situation.

As Joel mentioned, don't just sit and wait. The time for polite propriety has ended. If need be, raise a little hell with them.

Hang in there and offload as often as you wish.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline mjmel

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  • Posts: 2,069
Re: Just me offloading
« Reply #10 on: April 23, 2008, 06:12:27 AM »
Upsetting news, indeed.
As others have remarked, it's time to get aggressive with those f**kers. Do NOT fall through the cracks of the system.
Get outraged and express it. Be heard; be persistent. No more Mr. Nice Guy till you get yourself what is rightfully yours.
The problem here, however, is that no one would want your blood pressure to go through the roof.

Love your avatar. Such a long trunk.
 :-*
Mike

Offline MarkB

  • Member
  • Posts: 292
Re: Just me offloading
« Reply #11 on: April 24, 2008, 04:46:44 PM »
As before, thank you all for your wise counsel and support.

My appointment has been rearranged for May 13. I have stipulated that this must be kept, even if my current doctor is herself unable to see me. I have also asked to be informed if there is a cancellation which would enable me to be seen earlier, and have told them that if I continue to feel as bad as I do, I am just gonna turn up and wait to be seen.   >:(

I have a glucose tolerance test arranged for 1 May and am awaiting an appointment for an ECG. I have asked my GP to consider whether treatment for the cholesterol issue is not also appropriate, so that when I am next seen at the clinic an appropriate regime might be put in place.

I have no idea whether all this is the result of HIV infection, but I have to say that I have never felt so ill. My whole body feels like it is shutting down.
« Last Edit: April 24, 2008, 04:50:01 PM by aelwyd »

Offline BubbaPat

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  • Posts: 64
  • Hugs
Re: Just me offloading
« Reply #12 on: April 24, 2008, 05:48:54 PM »
 ::)
Hey Aelwyd... hang in there.

Personally I like to do some meditation or visualizations to help me feel better.  One... driving a Jeep with the top off while naked.  Two... shooting paint pellets at George Bush.  (no.. he is not a Texan)  Three...  seeing my living room filled with Australian Rules Football players

If those don't help... I eat chocolate.  My own Mississippi Mud is a great way to feel good.  Biting into a bunch of chocolate and marshmallow gooey goodness.

Of course that and getting hugs.  Since we're so far away, you'll need to imagine a hug that wraps around you and squeezes you so tight, there's no doubt your loved.

BUBBA HUGS!!!
Patrick
hugs!

Offline MarkB

  • Member
  • Posts: 292
Re: Just me offloading
« Reply #13 on: May 10, 2008, 05:27:37 AM »
Initial tests have produced good and not-so-good results. The good bit is that my blood sugars, though high, are within the normal range: so my GP doesn't think that I am diabetic  :)

The not-so-good part is that my cholesterol levels are still through the roof, most of it being the bad stuff. So he has asked me to go back and see him about it.  :(

... And on Tuesday I have to see my (next) new doc at the clinic. I suspect she may have bad news for me: wish me luck.

:-*

Offline yasoza

  • Member
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Re: Just me offloading
« Reply #14 on: May 12, 2008, 01:22:47 PM »
Sorry Aelwayd, at least things are showing up, to ask you few questions, are you attending a GUM clinic or it is your personal GP?Am in UK, ESSEX... I don't know the area you are in UK, but under NHS  you need to get medical attention as quick as possible, if you are in agony, under any circumstances, you could have just phone your nearest GUM clinic and make an emergency appointment, and they could have taken it without any constrain, we pay taxes for the reason''TO BE LOOKED AFTER INTIME OF ILLNESS'',not to feed people who are lazy, health and doesn't want to work >:(

Offline MarkB

  • Member
  • Posts: 292
Re: Just me offloading
« Reply #15 on: May 18, 2008, 02:45:24 PM »
Hi all

By way of follow-up. I DID get to see a doctor last week, but it's hard to know exactly what came out of the consultation.

The doc did not seem to think that my symptoms warranted treatment at this stage, although to be fair she is worried about my high blood pressure and cholesterol, and promised to write to my GP. She said that in the UK clinical guidelines were that medication would not be prescribed until my percentage fell below 14 and I was under 350.

She did, however, acknowledge that my trend is 'downward', and wants me to test again next month. I told her of my total exhaustion, sweats etc, but that information didn't get much of a response. She wouldn't give me any Acyclovir in case of a recurrence of the shingles I had a while ago as "... we don't like people self-diagnosing". I suppose that's understandable. The only point of real conflict came when I asked her whether decisions regarding medication were clinically- or cost-led. That didn't go down too well. She pointed out that "there are only so many options" as regards medication for HIV, and that because of this it is important to allow the immune system to fight the virus unaided as long as it can.

The clinic has asked me to become part of a trial by which a select group of HIV+ people whose CD4 is 400 or over are put on a course of hydroxychloroquine anti-rheumatoid arthritis drugs, to see whether that can boost the immune system. But it is a double-blind trial, so I would not be aware whether I actually am taking the drug, or whether it is a placebo. I am in two minds as to whether this is a good idea or not, and to be fair to them there is no pressure.

So we are more or less where we were. And I still feel like the bottom of a budgie's cage.

Love to all,

A x

Offline NLEWLAD

  • Member
  • Posts: 230
  • Anything is possible, ANYTHING
Re: Just me offloading
« Reply #16 on: May 18, 2008, 04:23:24 PM »
ALEWED,   am really sorry to hear your experiences if you were closer you could have my next appointment tomorrow (monday 19th may)

feel for you matey

xx
Simon - Location Manchester England
Negative test 10/11/07
Tested poz 28/12/07
Confirmed WB 07/01/08
Sero-converted Late December 07

Date        CD4            %              VL

7/01/08   1273 :)      N/A       100,232
24/01/08   755 :(      42%         4,010
13/2/08     922 :)      45%       78,234
09/04/08   652 :(      38%       36,604
05/05/08   936 :)      39%       38,952
07/07/08   844 :)      34%       24,000
12/11/08   753 :(      31%       45,600
no meds yet:)

Offline BT65

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Re: Just me offloading
« Reply #17 on: May 18, 2008, 10:43:47 PM »
Aelwyd, I'm sorry to hear about the doctor visit.  I hope things improve for you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

  • Member
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Re: Just me offloading
« Reply #18 on: May 19, 2008, 12:03:03 AM »
aelwyd,

I hope your appointment in a month goes smoothly and you do well in the mean time.  Sounds like you have a really tough choice make with that study.  I just wanted to wish you all the best!

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline MarkB

  • Member
  • Posts: 292
Re: Just me offloading
« Reply #19 on: June 30, 2008, 07:00:46 AM »
Update:

Lost my job in a recent reshuffle. So although there are days when I haven't got the energy to make it to the coffee pot, at least I can sleep when I want to. Financially I am OK for between 6 - 9 months *tightens belt*; after that I am well and truly scr*d. I see my doc again in August.

When you're HIV+ nothing simple ever happens, does it?


Offline xyahka

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  • Dance together!! aha!! aha!! I like it!!
Re: Just me offloading
« Reply #20 on: June 30, 2008, 07:17:10 AM »
Hi, i hope you are ok, just wanted to tell you that even bad things does not last forever.

Hang in there, and keep on trying some new job options, things will work out well. You'll see.

Hugs,

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline minismom

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  • Quocumque jeceris stabit
Re: Just me offloading
« Reply #21 on: June 30, 2008, 07:31:07 AM »
So sorry about all the "stuff" you are going through.  I sure hope that things start to upswing for you.  Take care of yourself.

 :-* Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline BT65

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Re: Just me offloading
« Reply #22 on: June 30, 2008, 09:51:07 AM »
Aelwyd, a lot can happen in 6-9 months.  Keep your chin up. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline next2u

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Re: Just me offloading
« Reply #23 on: June 30, 2008, 11:08:36 AM »
aelwyd,

i hope things improve for you my friend. enjoy sleeping in while you can. keep us posted on upcoming events. did your job offer a severance package? also, will they be providing you with a good review when potential employers call? is there a possibility of working for the same company again in the future?
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Iggy

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Re: Just me offloading
« Reply #24 on: June 30, 2008, 03:04:49 PM »
I'm sorry to hear about the job, though heartened to know you have the ability to weather a few months financially if necessary.

I do worry about this statement of yours though:

When you're HIV+ nothing simple ever happens, does it?


Unless something happened that is pertinent to your status in relation to your job - this is not something I want you to equate with life with HIV.  I know you have enough on your plate as far as dealing with being poz, and just caution you not to attribute all that goes wrong in the world with a virus.

You will be ok, though I agree this is a unwelcome event at this time in your life.


Offline MarkB

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Re: Just me offloading
« Reply #25 on: June 30, 2008, 04:06:04 PM »
I do worry about this statement of yours though:
Unless something happened that is pertinent to your status in relation to your job - this is not something I want you to equate with life with HIV.  I know you have enough on your plate as far as dealing with being poz, and just caution you not to attribute all that goes wrong in the world with a virus.

You're absolutely right, Iggy - I'm being a whingeing prat. Sorry.

Time for a drink, I think.

 :-*



Offline Assurbanipal

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Re: Just me offloading
« Reply #26 on: July 01, 2008, 12:08:20 AM »
Aelwyd

Sorry to hear things are going so poorly for you.  You are a man of superb talent and qualities and I'm sure that something will work out for you.  Hang in there

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline AlanBama

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Re: Just me offloading
« Reply #27 on: July 01, 2008, 09:03:04 PM »
Hang in there, aelwyd....

here's hoping for brighter days in you immediate future!

hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline lydgate

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Re: Just me offloading
« Reply #28 on: July 02, 2008, 10:20:36 PM »
You're absolutely right, Iggy - I'm being a whingeing prat. Sorry.

Time for a drink, I think.

 :-*


Not being a whingeing prat at all. You actually have a thing or seven to complain about.

Hope that drink helped. Also, I remember from another thread your saying you're a medievalist. Do "offload" your knowledge in the Off Topic forum if you feel like it, for the benefit of those of us who know that quite a few things did happen before 1485 -- but prefer watching 300 and Excalibur to reading Herodotus and Malory.  ;)

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

 


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