Re: Sarcoidosis minor problem

[Guest guest]

I wonder if some physicians look at this disease as a "minor annoyance" (that was how it was presented in my med-surg book in school) b/c that is how it was presented to them in medical school...plus, the visual can be deceiving: so many times we can "look" ok but be crashing inside.

Most MD's look at this a a minor problem. They're still reading the Merck Manual (even the 2006 edition) states that it is only a problem for few people.

Well, it's outdated. Seriously outdated.

It may still be that for most people sarc may just be a nuisance. I believe that this nuisance is misdiagnosed even today-- and they're treating us for URI's (upper respiratory infections) and asthma rather than realizing that we have an underlying condition that keeps us going back time and again. And since the drug of choice for URI (after the antibiotics) and asthma is prednisone, we've all been on years of 7 day pack of solu-medrol, or tapering doses of prednisone for 7 to 10 days--(the 5mg tablets where you take 7 pills on day one, 6 on day two, etc. So yes, we're overweight. We have sedentary jobs, sitting behind computers, processing information. No exercise there. we feast on the office potlucks, and yahoo- it's someone's birthday, or maybe it's Friday and the boss wants to treat the office to bagels.

I loved those days!

The reality is that we're being pushed aside due to chronic issues, obesity, the fact we're women and they think we're hormonal, and we seem sad, or we're not getting the rest we need because we're working full-time, raising kids, getting them to soccer and gymnastics and it's fastfood for dinner, and lunch, and we seem depressed, or tired-- but hey, it's life between 25-55 years old, and yep, you're hormonal.

So let's see if you're content in your marriage, hell- you have the energy to keep the kids together, the laundry, the dinners, and have no energy for sex--so you must be depressed or despondent. (They're framing this from their experience at home.) After all, they work all day, and come home to that dinner and sit and relax while you do dishes, laundry, and help the kids with their homework-- but that's what women do.

What they don't tell you is they don't get it. They worked hard all day- and still want sex. and they sleep like the dead. So what's the issue.

The issue is that we are sick. Add all the stuff we do as women, wives, mothers, employees, and how could you not be overwhelmed.

so take some Ambien and go to sleep. Take your Effexor and you'll see those moods brighten right up. Take those birth control pills, or Estrace patches, and man = that libido should be dancing all night.

The concept that you aren't breathing correctly, so you're constantly exhausted from borderline hyperventilation (that air is hanging in those lungs just wishing it could get out before it becomes carbon dioxide) and hell, the pulmonary function test did show that you're not exchanging air the way it should-- so it must be asthma--add prednisone and more weight-- and man does the cycle get the wheels turning-- the wrong way!!

You are not nuts, depressed, hormonal and all of the above. Your body isn't functioning correctly, and you're still pushing yourself to do all the things we all do. When sarcoidosis starts to take off and become multi-systemic, you're toasted. Exhaustion, fatigue, anxiety (after all you feel like you can't push yourself another inch) and you want to be the lover and partner that your husband wants-- as much as he wants you-- but you don't have the energy. The kids need glue and construction paper and a book from the library and it's 9:15 at night, and they need to be in bed, and so do you.

You get in the car, drive them to Walmart, get the school supplies, and then you realize that you're out of bread, milk, and cereal-- and bananas and lunches need to come together and mom, my gym clothes didn't get washed-- and where is my good shirt, and life goes on.

So, the next time your MD shines you on-- hit him with a hockey stick, and ask when the last time he left work, took the kids to soccer, scouts, the store at 10pm, and when he says his profession requires 12-14 hrs a day-- let him know yours does too. It just doesn't pay in dollars as well.

Then ask him if he's willing to learn about your advanced disease, and let him know that if he can't-- he's fired. Let him know that you need a 'teamplayer' that can help you understand how to deal with the interruption of your life because you're too tired to function-- not because of your family life-- but because you have the added challenge of chronic illness.

and take the articles with you-- highlight what concerns you- and pull your chair in front of the door- and don't let the bugger out until you have some answers.

That's my soapbox for tonight,

Tracie

NS co-owner/moderator

[Guest guest]

Tracie: Couldn't have said it better. As I was reading your email I remembered what it took years ago for me to get a diagnosis: went through a couple of D & C's (had to be a "woman" thing...), went to the ER several times when my ticker would wake me up in the wee hours of the morning beating out of my chest and skipping (of course that was "stress"), went through at least half a dozen drs over a two year timeframe b/c I felt something was just not right ("woman stuff again:hormonal"), until finally one morning (around 0400) in 1994 my heart was acting so weird (and showing couplets on the monitor) that when the ER dr came to me and said "well, the skips look benign so we're sending you home and follow-up with your dr". At that point, I burst into tears and said "please help me. You can't send me home b/c something is really not right and I'm scared." So the ER dr did a chest x-ray and guess what...it showed multiple masses in my chest cavity. He came back to me

and said: "you've got a serious problem". Chest CT showed even better picture of masses and then subsequent medianstinoscopy later showed sarcoid. At least then I knew a name for what was happening to me. I had very little knowledge about sarcoid back then (even as a nurse) and to make matters worse we were in the process (a few days after my medianstinoscopy) of moving to Florida from Ft. Bragg, NC. So then had to find a new dr here and the process then became finding a dr who knew about sarcoid. I saw a pulmonologist who took one look at me and said "I'm not giving you pain meds"...I hadn't even mentioned wanting pain meds but had told him I was aching all over and my medianoscopy was still fresh (and appearing infected) since had only been a very short time since the surgery. My intention during that eval was to tell the dr what was going on with my body, would not have taken anything stronger than a tylenol back then had he even offered it to me. So, changed drs

(we were new to the area and my husband was headed to Honduras as part of an army assignment) and was placed on tenormin which slowed my heartrate down and by doing so helped with the skips. Took my share of the solu-medrol dose tapering dose packs when a respiratory infection would come on but basically did fairly ok until I got the mother of all respiratory bugs a few years later (had just started working in the ER) that lasted about 3 months (a dozen different antibiotics). Took a long time to get completely over that and then 2+ yrs later in July 2004 I flared big time with horrendous arm/wrist/hand/finger pain and the list goes on. So your words really hit home. We're all in this together. Things have got to change regarding the info put out to the public and medical people about this disease. I've given much thought to what could be done to help this along....maybe we should all flood the press, etc., with letters about this disease and what it is really

doing to many people. Only when a few celebritites have come forward (one by dying in his sleep) has there even been a blip on the screen. We need help. Thanks for listening,Beckytiodaat@... wrote: In a message dated 9/14/06 2:23:31 PM Pacific Daylight Time, macandtosh626 (AT) yahoo (DOT) com writes: I wonder if some physicians look at this disease as a "minor annoyance" (that was how it was presented in my med-surg book in school) b/c that is how it was presented to them in medical school...plus, the visual can be deceiving: so many times we can "look" ok but be crashing inside. Most MD's look at this a a minor problem. They're still reading the Merck Manual (even the 2006 edition) states that it is only a problem for few people. Well, it's outdated. Seriously outdated. It may still be that for most people sarc may just be a nuisance. I believe that this nuisance is misdiagnosed even today-- and they're treating us for URI's (upper respiratory infections) and asthma rather than realizing that we have an underlying condition that keeps us going back time and again. And since the drug of choice for URI (after the antibiotics) and asthma is prednisone, we've all been on years of 7 day pack of solu-medrol, or tapering doses of prednisone for 7 to 10 days--(the 5mg tablets where you take 7 pills on day one, 6 on day two, etc. So yes, we're overweight. We have sedentary jobs, sitting behind computers, processing information.

No exercise there. we feast on the office potlucks, and yahoo- it's someone's birthday, or maybe it's Friday and the boss wants to treat the office to bagels. I loved those days! The reality is that we're being pushed aside due to chronic issues, obesity, the fact we're women and they think we're hormonal, and we seem sad, or we're not getting the rest we need because we're working full-time, raising kids, getting them to soccer and gymnastics and it's fastfood for dinner, and lunch, and we seem depressed, or tired-- but hey, it's life between 25-55 years old, and yep, you're hormonal. So let's see if you're content in your marriage, hell- you have the energy to keep the kids together, the laundry, the dinners, and have no energy for sex--so you must be depressed or despondent. (They're framing this from their experience at home.) After all, they work all day, and come home to that dinner and sit and relax while you do dishes,

laundry, and help the kids with their homework-- but that's what women do. What they don't tell you is they don't get it. They worked hard all day- and still want sex. and they sleep like the dead. So what's the issue. The issue is that we are sick. Add all the stuff we do as women, wives, mothers, employees, and how could you not be overwhelmed. so take some Ambien and go to sleep. Take your Effexor and you'll see those moods brighten right up. Take those birth control pills, or Estrace patches, and man = that libido should be dancing all night. The concept that you aren't breathing correctly, so you're constantly exhausted from borderline hyperventilation (that air is hanging in those lungs just wishing it could get out before it becomes carbon dioxide) and hell, the pulmonary function test did show that you're not exchanging air the way it should-- so it must be asthma--add prednisone and

more weight-- and man does the cycle get the wheels turning-- the wrong way!! You are not nuts, depressed, hormonal and all of the above. Your body isn't functioning correctly, and you're still pushing yourself to do all the things we all do. When sarcoidosis starts to take off and become multi-systemic, you're toasted. Exhaustion, fatigue, anxiety (after all you feel like you can't push yourself another inch) and you want to be the lover and partner that your husband wants-- as much as he wants you-- but you don't have the energy. The kids need glue and construction paper and a book from the library and it's 9:15 at night, and they need to be in bed, and so do you. You get in the car, drive them to Walmart, get the school supplies, and then you realize that you're out of bread, milk, and cereal-- and bananas and lunches need to come together and mom, my gym clothes didn't get washed-- and where is my good shirt, and life goes

on. So, the next time your MD shines you on-- hit him with a hockey stick, and ask when the last time he left work, took the kids to soccer, scouts, the store at 10pm, and when he says his profession requires 12-14 hrs a day-- let him know yours does too. It just doesn't pay in dollars as well. Then ask him if he's willing to learn about your advanced disease, and let him know that if he can't-- he's fired. Let him know that you need a 'teamplayer' that can help you understand how to deal with the interruption of your life because you're too tired to function-- not because of your family life-- but because you have the added challenge of chronic illness. and take the articles with you-- highlight what concerns you- and pull your chair in front of the door- and don't let the bugger out until you have some answers. That's my soapbox for tonight, Tracie NS co-owner/moderator

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[Guest guest]

We really do have a lot of nurses in the group!!! Coincidence or stress of the job? I know my job was stressful. I think that plays a lot into those who are predisposed to getting sarcoid. If you are predisposed, and stressed ... bang, you've got it.

Anyone out there have a very calm and peaceful life before getting sick?

Hugs and prayers,

Joan

[Guest guest]

Right on Tracie!!!!!! Thanks for the ammo!!!!

-

>

> In a message dated 9/14/06 2:23:31 PM Pacific Daylight Time,

> macandtosh626@... writes:

>

>

> > I wonder if some physicians look at this disease as a " minor annoyance "

> > (that was how it was presented in my med-surg book in school) b/c that is

how it

> > was presented to them in medical school...plus, the visual can be deceiving:

> > so many times we can " look " ok but be crashing inside.

>

> Most MD's look at this a a minor problem. They're still reading the Merck

> Manual (even the 2006 edition) states that it is only a problem for few

people.

> Well, it's outdated. Seriously outdated.

> It may still be that for most people sarc may just be a nuisance. I believe

> that this nuisance is misdiagnosed even today-- and they're treating us for

> URI's (upper respiratory infections) and asthma rather than realizing that we

> have an underlying condition that keeps us going back time and again. And

since

> the drug of choice for URI (after the antibiotics) and asthma is prednisone,

> we've all been on years of 7 day pack of solu-medrol, or tapering doses of

> prednisone for 7 to 10 days--(the 5mg tablets where you take 7 pills on day

one,

> 6 on day two, etc. So yes, we're overweight. We have sedentary jobs, sitting

> behind computers, processing information. No exercise there. we feast on the

> office potlucks, and yahoo- it's someone's birthday, or maybe it's Friday and

> the boss wants to treat the office to bagels.

> I loved those days!

> The reality is that we're being pushed aside due to chronic issues, obesity,

> the fact we're women and they think we're hormonal, and we seem sad, or we're

> not getting the rest we need because we're working full-time, raising kids,

> getting them to soccer and gymnastics and it's fastfood for dinner, and lunch,

> and we seem depressed, or tired-- but hey, it's life between 25-55 years old,

> and yep, you're hormonal.

> So let's see if you're content in your marriage, hell- you have the energy to

> keep the kids together, the laundry, the dinners, and have no energy for

> sex--so you must be depressed or despondent. (They're framing this from their

> experience at home.) After all, they work all day, and come home to that

dinner

> and sit and relax while you do dishes, laundry, and help the kids with their

> homework-- but that's what women do.

>

> What they don't tell you is they don't get it. They worked hard all day- and

> still want sex. and they sleep like the dead. So what's the issue.

>

> The issue is that we are sick. Add all the stuff we do as women, wives,

> mothers, employees, and how could you not be overwhelmed.

> so take some Ambien and go to sleep. Take your Effexor and you'll see those

> moods brighten right up. Take those birth control pills, or Estrace patches,

> and man = that libido should be dancing all night.

>

> The concept that you aren't breathing correctly, so you're constantly

> exhausted from borderline hyperventilation (that air is hanging in those lungs

just

> wishing it could get out before it becomes carbon dioxide) and hell, the

> pulmonary function test did show that you're not exchanging air the way it

should--

> so it must be asthma--add prednisone and more weight-- and man does the cycle

> get the wheels turning-- the wrong way!!

>

> You are not nuts, depressed, hormonal and all of the above. Your body isn't

> functioning correctly, and you're still pushing yourself to do all the things

> we all do. When sarcoidosis starts to take off and become multi-systemic,

> you're toasted. Exhaustion, fatigue, anxiety (after all you feel like you

can't

> push yourself another inch) and you want to be the lover and partner that your

> husband wants-- as much as he wants you-- but you don't have the energy. The

> kids need glue and construction paper and a book from the library and it's

> 9:15 at night, and they need to be in bed, and so do you.

> You get in the car, drive them to Walmart, get the school supplies, and then

> you realize that you're out of bread, milk, and cereal-- and bananas and

> lunches need to come together and mom, my gym clothes didn't get washed-- and

where

> is my good shirt, and life goes on.

>

> So, the next time your MD shines you on-- hit him with a hockey stick, and

> ask when the last time he left work, took the kids to soccer, scouts, the

store

> at 10pm, and when he says his profession requires 12-14 hrs a day-- let him

> know yours does too. It just doesn't pay in dollars as well.

>

> Then ask him if he's willing to learn about your advanced disease, and let

> him know that if he can't-- he's fired. Let him know that you need a

> 'teamplayer' that can help you understand how to deal with the interruption of

your life

> because you're too tired to function-- not because of your family life-- but

> because you have the added challenge of chronic illness.

>

> and take the articles with you-- highlight what concerns you- and pull your

> chair in front of the door- and don't let the bugger out until you have some

> answers.

>

> That's my soapbox for tonight,

> Tracie

> NS co-owner/moderator

>

[Guest guest]

It seems to me I read somewhere that sarcoid is more common in healthcare workers. I also work in healthcare, first in hospital ed and admissions and now in surgeons office. Was diagsnosed when I worked in the hospital...

Bonnie B

[Guest guest]

Tracie!!! You really hit the nail on the head because that is my life on many days. Added to it, my hopefully soon to be -ex will not change so much a roll of tp, or a light bulb so most of the domestic and non domestic chores come to me. My sons do the lawn mowing, and hopefully the trash(when they remember) but everything else, well. I get tired, so frustratingly tired... My friend said to me last night that she doesn't know how I do it and truthfully, we all just keep keeping on. Can't stop to take the time for our illness or it WINS!!!! Over my dead body, which, Lord willing, will be sometimes way down the road. Miles, and miles..

I like your style, girl!! You are my role-model.

Bonnie B

[Guest guest]

Bonnie,

Thank you. This disease is a bugger. and yes, we can't give up. We are the "pioneers" that will be challenged all the way - and we'll be the ones that start new medications so that the MD's will be able to have a cure down the road.

I've done alot of research and followed (and been lead) by the nose several dear friends that had cancer and lymphoma's and such. The common thread that I witnessed as they came to the end of their physical life-- is that they all stopped "fighting" and "warring" against what was happening, and developed a spiritual grace that far surpassed what most of us experience in our divine relationships.

The calmness of their inner self was such a gift-- and I am so blessed that they allowed me to be part of their journey. The only way I know to honor them- is to follow their example-- and instead of blowing up at the small stuff-- is to learn to watch the chaos around me, and instead of the normal vacuum that we get sucked into-- to use visualization and breathwork to calm the chaos.

For instance, we've all been in the grocery store, and the kids are bugging mom way past the edge-- and she starts screaming at them. Or in the restaurant and they spill something, and they're yelled at and belittled-- instead of that energy coming into your space, send out a loving, kind gentle breath of calmness, both to the mom and to the kids. They won't know you've done this-- but do it anyway. I guarantee that you'll see them all take in a breath, and start to calm themself.

I know this is a simple analogy, but it works. i truly believe that it is a start to a more peaceful world. It is just going to have to happen one person at a time.

Let some gentleness into your day, and how you feel about your being sick. It's hard, yes-- but it's what is-- and we will get thru this for as long as we are needed.

Blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

Tracie,

I do understand where you're coming from. I work in a surgeons office, and people are frequently upset and under a lot of stress, both pre and post op. We also see alot of cancer, unfortunately. I am constantly aware of sending peaceful and healing thoughts to my patients, as we are a practice that does really care about those who seek our help. Except for one, new person who is very negative in every aspect of her life. I have tried to convey to her how her attitude infects the office and the patients also feel it. She is unwilling to give up this way of looking at life. I feel so bad for her because that's no way to live. Somewhere in her life, it served a purpose for her and she let it become her way of looking at the world. I do not encourage talking with her much anymore. It's a choice I've made. I'm polite. Manners, always.

I will also try the thought push at the grocery store. My kids always came first. Never shopped at lunch time, nap time. Unruly children were taken out of carts and taken back home. Never had to do that more than once!! Bonnie B

[Guest guest]

preach on sister////////////hugs connie

Connie, many of the "oldies" of the group will tell you I've had a 'few' rants over the years-- before Rose started scoring them-- and that my soapbox can be used for both good and uhhmm, well-- let's just say that it takes alot to get me mad--- but it's possible. LOL!

I do wish this disease was taken seriously, because if you aren't part of the 80% club-- you're screwed. Without the kisses.

Hugs back,

Tracie

[Guest guest]

Joan, I wonder if our jobs in the medical field didn't force our bodies to put up with to many attacks from illnesses that other people had, and caused our immune system to go nuts? Conniepickstands@... wrote: We really do have a lot of nurses in the group!!! Coincidence or stress of the job? I know my job was stressful. I think that plays a lot into those who are predisposed to getting sarcoid. If

you are predisposed, and stressed ... bang, you've got it. Anyone out there have a very calm and peaceful life before getting sick? Hugs and prayers, Joan

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

Sounds plausible to me...we have hyper immune systems so maybe ours just went crazy....BeckyConnie Griffis wrote: Joan, I wonder if our jobs in the medical field didn't force our bodies to put up with to many attacks from illnesses that other people had, and caused our immune system to go nuts? Conniepickstands (AT) aol (DOT) com wrote: We really do have a lot of nurses in the group!!! Coincidence or stress of the job? I know my job was stressful. I think that plays a lot into those who are predisposed to getting sarcoid. If you are predisposed, and stressed ... bang, you've got it. Anyone out there have a very calm and peaceful life before getting sick? Hugs and prayers, Joan Stay in the know. Pulse on the new Yahoo.com. Check it out.

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