Big Mo's got competition

[franksolich]

http://www.democraticunderground.com/11472598

Oh my.

auntAgonist (16,933 posts)    Wed May 13, 2015, 11:57 PM

So I'm trying to get my head around my recent diagnosis'
 
I have been so ill since last summer. Many times admitted to the hospital for a week or two at a time.

Not only am I severely iron deficient anaemic, I have Trousseau's Syndrome or Migrating Thrombophlebitis. I've had Pulmonary embolisms, clots in my upper arms and many many blood transfusions. The most I received at one hospital stay was 6 units because my hemoglobin level was 5, dangerously low.

I've been seeing a Haematologist and a Gastroenterologist, and a Rheumatologist as well. Finally after myriad testing and scans the diagnosis is Lupus or SLE (systemic lupus erythematosus).
The chronic back pain and joint inflammation has been awful. I have osteo-arthritis in my ankles, knees, hips and lower back coupled with rheumatoid arthritis.

Today I had a complete body-bone scan and I'll get the results early next week.

I'm fortunate to have good insurance and I've been referred to a leading Dr who heads up some research in Lupus. I'm looking forward to getting in to see her.

Last week and this week I've been getting Iron Infusions. 1 a day for 10 days. My veins are so tiny and thready and tend to run at the mention of the word needle so after too many attempts last Monday to start an IV they sent me for a PICC line. Much easier to deal with. It's not painful although the first couple of days after insertion it sure was. Now I hardly notice it there.

Anyway, I have so so much to learn and I'm hoping that I can glean some good information here.

Thanks for reading. 

No Vested Interest (2,379 posts)    Thu May 14, 2015, 01:48 AM

1. Best wishes to you, auntAgonist, as you continue treatment.
 
So glad you got a firm diagnosis, even though you might have welcomed an easier one.

Peace.

[Carl]

http://en.wikipedia.org/wiki/Trousseau_sign_of_malignancy


http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus


My guess is AIDS.

[franksolich]

http://en.wikipedia.org/wiki/Trousseau_sign_of_malignancy

http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus

My guess is AIDS.

Man, you bothered looking up part of that long shopping list of ailments?

Me, since this primitive's been treated for haemorrhoids since Ike and Mamie were in the White House, I just sort of assumed they all had something to do with the bowels.

[Carl]

Man, you bothered looking up part of that long shopping list of ailments?

Me, since this primitive's been treated for haemorrhoids since Ike and Mamie were in the White House, I just sort of assumed they all had something to do with the bowels.

Usually their proclamations of specific illness and symptoms don`t match the documented ones.

Trousseau's Syndrome is apparently associated with cancerous malignancy yet no mention of such in the OP.
The term is thrown out in a ho-hum fashion suggesting it is simply a chronic disability rather then a precursor of a likely death sentence.

http://www.ncbi.nlm.nih.gov/pubmed/8317122

[franksolich]

You know, there's some new fad in medical practice that strikes me as s-o-o-o-o-o-o silly.

Constantly, over the past weekend, I was asked by ambulance guys, physicians, and nurses, "on a scale of zero to ten, with zero being no pain and ten being unbearable pain, where are you at now, on that?  How do you feel?  What number?"

Every time that question was asked me, my jaw would drop and I would stare open-mouthed.

Pain is relative; what's somewhere between zero and one for franksolich, for a primitive, the same degree, or intensity, of pain would be a ten, verging on an eleven, because primitives aren't known for their fortitude and besides, the higher they rate their pain, the better the chances they're going to get some drugs.

That is such a stupid question.  I can't believe medical professionals can ask it without laughing.

[Linda]

You know, there's some new fad in medical practice that strikes me as s-o-o-o-o-o-o silly.

Constantly, over the past weekend, I was asked by ambulance guys, physicians, and nurses, "on a scale of zero to ten, with zero being no pain and ten being unbearable pain, where are you at now, on that?  How do you feel?  What number?"

Every time that question was asked me, my jaw would drop and I would stare open-mouthed.

Pain is relative; what's somewhere between zero and one for franksolich, for a primitive, the same degree, or intensity, of pain would be a ten, verging on an eleven, because primitives aren't known for their fortitude and besides, the higher they rate their pain, the better the chances they're going to get some drugs.

That is such a stupid question.  I can't believe medical professionals can ask it without laughing.

I agree it is a stupid question too. A friend just hurt her back, she was in the hospital for 2 weeks then sent to a nursing home for 3 weeks before going home.

 She was asked that question over and over again.

When she 1st hurt her back ( she couldn't get up or walk) she said her pain level was 10.

Now that she is home ( she is walking and moving better than before she hurt her back) she was asked what was her pain level, her answer was 10 most of the time.

[franksolich]

I agree it is a stupid question too. A friend just hurt her back, she was in the hospital for 2 weeks then sent to a nursing home for 3 weeks before going home.

 She was asked that question over and over again.

When she 1st hurt her back ( she couldn't get up or walk) she said her pain level was 10.

Now that she is home ( she is walking and moving better than before she hurt her back) she was asked what was her pain level, her answer was 10 most of the time.

What got me was that I was hooked up to a lot of gauges that should've been able to tell medical professionals--a lot better than I could articulate it for them--the exact degree of pain.

It's been a very long time since I've been in a hospital, and even longer than that, in intensive care, and so this was kind of a new experience.  True, I was in great peril, but I decided that since there wasn't anything I could do about it, I might as well make an adventure of it.

<<<always makes lemonade out of lemons.

There was one machine that I want for Christmas.  Seriously.  It measured not only the heart-beat and gave a running EKG of the heart (two separate EKGs, actually), but it did other stuff like telling the observer how much oxygen I was absorbing, the respiration rate, the body temperature, the blood pressure, and other stuff explained to me but because of deafness I didn't "get it" all.

I want one of those for Christmas.  It was great, to actually see how well I was doing.

[JohnnyReb]

What got me was that I was hooked up to a lot of gauges that should've been able to tell medical professionals--a lot better than I could articulate it for them--the exact degree of pain.

It's been a very long time since I've been in a hospital, and even longer than that, in intensive care, and so this was kind of a new experience.  True, I was in great peril, but I decided that since there wasn't anything I could do about it, I might as well make an adventure of it.

<<<always makes lemonade out of lemons.

There was one machine that I want for Christmas.  Seriously.  It measured not only the heart-beat and gave a running EKG of the heart (two separate EKGs, actually), but it did other stuff like telling the observer how much oxygen I was absorbing, the respiration rate, the body temperature, the blood pressure, and other stuff explained to me but because of deafness I didn't "get it" all.

I want one of those for Christmas.  It was great, to actually see how well I was doing.

Great little machine.....I found it more entertaining than the TV. For what they charge for a bed in ICU you would think they would have better channels. I can understand leaving out the porno channels but 9 of the most boring channels ever.....they're trying to bore you to death.

Repeated at every shift change and sometimes in between.

"On a scale of 1 to 10 huh. It hurts, it hurts a lot...NO NO don't touch that nitro drip. I can't stand anymore. I pass out if you increase it."

"What do you mean the leads are in the wrong place? Everybody that comes in here says that and adds their own rubber patches. They never pull any off. I must have 50 or more by now so surely you can use some of them without adding more?"

To the one slender nurse in the whole crowd, "Why are all the cardiac care nurses obese but they tell 180 pound me I need to diet and lose weight?" (I swear one of them looked like Nadin...as round as she was tall)

"This wasn't on the heart healthy diet list of foods I could have? No, don't take it back. It's the first real food I've had in days."

"What do you mean I can't take a bath yet? I haven't had one in a week. Am I not ripe enough yet?"

"I'm sorry. I didn't know standing on my head in this little sink to wash my hair would set off the monitor so 6 of you could rush in here to watch me do it.....how much did that cost me?"

[Bad Dog]

Man, you bothered looking up part of that long shopping list of ailments?

Me, since this primitive's been treated for haemorrhoids since Ike and Mamie were in the White House, I just sort of assumed they all had something to do with the bowels.

I'm no expert but, that could surely lead to the AIDS diagnosis mentioned above.

[obumazombie]

The 1 to 10 scale is adjusted up or down to fit the patient's medical history.
Experienced healthcare workers are able to flush out the drug seekers with that question and a couple accompanying questions.