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KCat
07-22-2011, 10:17 AM
My recent experiences with two very aggressive doctors who wanted me to see them every month and draw blood every month (two needle sticks a month - same tests each time for one of them) kept reminding me of something someone said to me in a support group meeting about 13 years ago.

I remember bristling even thing. She was a sweet person that I liked very much and I don't fault her for thinking this way and perhaps some here feel this way but it's something I balked at then.

I was complaining about the doc appts and exhaustion and she said, "You have to accept that from now on this is your job. Your job is to go to doctors. It's a full-time job. Let go of your former job."

Well, I guess she was trying to help me feel better about having to leave the lab and not be a useful member of society anymore. I've never really been able to do that and went through a nasty depression because of it. But I also can't accept that point of view. My job is to be a wife, a mom, a dog-mom, a writer, a friend, and anything else that comes my way. Patient is not on the list. Patient is something I do because it is necessary but it is not my occupation.

That is why I don't plan on spending too much time here on a regular basis. Right now I'm still dealing with the plaquenil issues and with recovering from seven months of what I consider abuse from those two doctors. But past that, I want to get back to my life with Lupus as an issue on the side if at all possible. I realize that if things go south because I have to come off the Plaquenil, I could be singing a different tune. But I pray that this is not the case.

Just ruminating.

rob
07-22-2011, 11:11 AM
I try to keep it simple. For me, my job is to have more good days than bad. Seeing all of my various specialists is a necessary evil that allows me to do that job. It's a simple goal, not always simple to achieve.

Rob

n.mac
07-22-2011, 02:38 PM
Well said!

magistramarla
07-22-2011, 02:43 PM
KCat,
Be glad that you have some docs who are aggressively treating your disease. My good rheumy in Texas had me taking an injection of MTX once a week. She insisted that it is extremely important to get blood drawn for a liver panel every 4-6 weeks. It was just a quick stop-off at her in-office lab, which wasn't a problem.
I moved to Ca, and the rheumy that I have now doesn't seem to believe what the other one had in my records. She only sees me twice a year, and she let me go on taking the injections without any bloodwork for nine months. When she finally did order some lab work, she didn't even request the liver panel. She didn't bother to renew my prescription for MTX, and I didn't ask for it. I'm just staying off of it and putting up with my skin problems coming back until we move back to SA in a year.
It's really not good when you can't trust your rheumy's judgment.
Hugs,
Marla

KCat
07-22-2011, 06:36 PM
I try to keep it simple. For me, my job is to have more good days than bad. Seeing all of my various specialists is a necessary evil that allows me to do that job. It's a simple goal, not always simple to achieve.

Rob

That's what my husband has said. And while I agree, it annoys me. :) He phrases it as, "Your job is to stay well." But I want so much more than that. I want to be useful and I don't feel useful right now. When school starts back up I'll be wishing I could be less busy (I'm the student right now) and I do work on the home business. But I miss actually bringing in dinero, you know. Instead of just spending it on doctors and drugs.

Well, the dog wants his walk & sniff. Gotta go check up on his girlfriends. He may be blind but he's still a playuh.

steve.b
07-22-2011, 11:24 PM
my job is to love my wife and children .(full stop)

to be able to do that, i need to be as well as i can be, physically and mentally.

doctors are a part of the proccess. i may not like it / but it is still part of the proccess.

things like "wife, a mom, a dog-mom, a writer, a friend, and anything else that comes my way" are what make you, you.
they are part of your identity, they are not your identity.

Peridot20_Gem
07-23-2011, 06:57 AM
Kcat,

I know it's terrible how you feel and want to do more and your hubby is correct "Your job is to stay well" because even though the meds help...they can only do their job to a certain extent and the rest is up to we on how we get along.

My life was took from me at 18 and i'm 42 and i had no choice..i've had my days of crying but the best days for me is wakening of a morning knowing i can still walk instead of being paralised and i'm only classed as an housewife but i'd rather be that with the love and support i have.

You need to except the goodness of each day that comes...please don't take this offensive because it's not meant that way but we have moms/dads on here who's young child as been diagnosed with Lupus besides our lovely young teenager member's finding it hard to cope each day but who try their hardest like we all.

Worship your days.

Terry xxx

KCat
07-23-2011, 09:20 AM
I know y'all are right. It's all rational and logical. I supported my daughter and myself for a long time (and my first husband but I'd rather forget those times) and it's very hard to accept that people take care of me now. Even though they've done so since 1997. It still angers me at times. I was doing fine with it until this latest round of doctors. And truth is, I need to get back to school. When I'm in class I am too busy mentally to fret about where I have failed as a person. There's the rub - I feel like I failed by getting sick - yes, I do see a therapist for this distorted thinking.

And I will be fine again. Once it's all sorted with the meds and I am back to "normal life" (for me). I don't want to give the wrong impression. I'm not walking around feeling sorry for myself by any stretch. I am very blessed and thankful. Very blessed with a good family and good life. Have no want for anything save self esteem which I'm working on. I just wanted to talk about this mental approach to illness. I found it unproductive for me. To focus on being a patient instead of being a person. IOW, to me the expression that my "job" was to be a patient was equivalent to saying that "Lupus has me." And I prefer to think in the way that a lot of us do and in that somewhat cliche way that we hear on television about cancer (it applies to lupus as well). "I have Lupus, Lupus doesn't have me." That's all I was getting at.

Saysusie
07-23-2011, 09:46 AM
I think that the issue here that is causing a problem is that we may be trying to define ourselves by ONE JOB. The truth is, in our lives, we have many "jobs" and each and every one of them is of equal importance. As you mentioned, our jobs include being a mother, a wife, a friend, etc. These are jobs that we choose and we happily work hard at them.
But our lives are also filled with jobs that we "need", such as financial procurement (which is not limited to employment), because these jobs provide us with the means to be better at the jobs that we choose. Then there are those jobs that are thrust upon us due to circumstances or health issues..like the job of taking care of our health, keeping our doctor's appointments, taking our medications regularly and doing all that we can to be as healthy as we can.
It is important that we be equally diligent in each of our jobs because they are all intertwined. If we slack off on one, it will adversely affect the other. If we take each of our jobs seriously and work hard at each of them, then we can have pride in ourselves and can define ourselves as successful due to our diligence in each one of them.
You have much to be proud of, do not define yourself by your limitations. Choose, instead, to glorify all of the jobs that you are so successful at and continue to be diligent in all of them. I wish you the very best :-)

Peace and Blessings
Namaste
Saysusie

rob
07-23-2011, 12:22 PM
Good thread. Plenty of logical, solid ideas to ponder. Here's an illogical one I sometimes think about...

Lupus, being the invisible hit and run ghost that it is, makes me sometimes wish that it could take some physical form. Something like a creature, a monster, if you will. Something tangible that I could confront face to face.

Once it does this, my new job is to beat the living hell out of it with a rusty crowbar until it goes away, and a satisfying job it would be!

I could get rid of Lupus forever, and get in some really wonderful anger management therapy at the same time, kinda like, a bonus.

Rob

lovedbyHim
07-23-2011, 04:47 PM
Good thread. Plenty of logical, solid ideas to ponder. Here's an illogical one I sometimes think about...

Lupus, being the invisible hit and run ghost that it is, makes me sometimes wish that it could take some physical form. Something like a creature, a monster, if you will. Something tangible that I could confront face to face.

Once it does this, my new job is to beat the living hell out of it with a rusty crowbar until it goes away, and a satisfying job it would be!

I could get rid of Lupus forever, and get in some really wonderful anger management therapy at the same time, kinda like, a bonus.

Rob

I have days when the docs and the symptoms make me want to scream and beat the daylights out of something, which of course is the disease and what it has stolen from me and my family. But I also am able to see the good that has come out of the mess. I know that sounds like Pollyanna again, but honestly, some things changed for the better because I can't rush impulsively here & there anymore. I am forced to slow down and feel empathy for those who are sick. I am forced to be still and just love those around me. I still have my job, but I don't know how much longer. One of the hardest and best words my rheumy said to me was, "Expect that you will no longer be the person you were before." I remember those words everytime I lose part of who I was. I miss who I was. But I don't want to spend too much time grieving that loss, because I don't want to miss the sweet moments of joy I have with those who love me. There is no promise of tomorrow for anyone. Heck I might fall down the steps tonight and I could have spent my moments fighting to have my old self back, when I could have been embracing every moment with those who love me. Just my thoughts.

Peridot20_Gem
07-23-2011, 05:12 PM
I have days when the docs and the symptoms make me want to scream and beat the daylights out of something, which of course is the disease and what it has stolen from me and my family. But I also am able to see the good that has come out of the mess. I know that sounds like Pollyanna again, but honestly, some things changed for the better because I can't rush impulsively here & there anymore. I am forced to slow down and feel empathy for those who are sick. I am forced to be still and just love those around me. I still have my job, but I don't know how much longer. One of the hardest and best words my rheumy said to me was, "Expect that you will no longer be the person you were before." I remember those words everytime I lose part of who I was. I miss who I was. But I don't want to spend too much time grieving that loss, because I don't want to miss the sweet moments of joy I have with those who love me. There is no promise of tomorrow for anyone. Heck I might fall down the steps tonight and I could have spent my moments fighting to have my old self back, when I could have been embracing every moment with those who love me. Just my thoughts.Tammy,

What a lovely way of expressing how to get on with life..even surrounded with Lupus.

I'll admit it's struggle and alot of member's keep going workwise like yourself but with other's and such as myself life as to be excepted for the way it is and as long as you have love and support around you it helps you fight mentally.

steve.b
07-23-2011, 08:01 PM
Good thread. Plenty of logical, solid ideas to ponder. Here's an illogical one I sometimes think about...

Lupus, being the invisible hit and run ghost that it is, makes me sometimes wish that it could take some physical form. Something like a creature, a monster, if you will. Something tangible that I could confront face to face.

Once it does this, my new job is to beat the living hell out of it with a rusty crowbar until it goes away, and a satisfying job it would be!

I could get rid of Lupus forever, and get in some really wonderful anger management therapy at the same time, kinda like, a bonus.

Rob


i would use that little red switch.
flip the switch, push the button and "poof"

KCat
07-23-2011, 10:46 PM
I have days when the docs and the symptoms make me want to scream and beat the daylights out of something, which of course is the disease and what it has stolen from me and my family. But I also am able to see the good that has come out of the mess.

This is something that is confusing to many. To be able to say, "I have learned and grown from this experience." On the one hand, I wouldn't wish this on anyone. On the other, would I actually give up what I have gained from it? It's hard to say. Yes, I wish I could wish it away. Or beat the living hell out of it, as Rob said. But could we be that strong if we hadn't been through this? It's a lot like my first marriage. Pure Hell for seven years. Married to a Bipolar alcoholic and his mother, the Anti-Christ. They double-teamed me regularly. Later, after the divorce they did the same to my daughter. But the two of us are strong and we don't take any crap from people. And we are very close from the battle we had to fight together. As my husband is fond of saying (even though I roll my eyes when he says it because it comes from a Governator movie), "That which does not kill us, makes us stronger." Yeah, it's an annoying cliche but it does have a lot of truth for those of us with chronic illness.

So, no, it's not Pollyanna at all. I think it's a very real result of surviving illness or trauma. And, as your last couple of lines indicate, just living. Every day I look at my husband and think how blessed I am to have found him at all. Take away the Lupus and I still have the miracle of having lived through a near-fatal first marriage and saving my daughter along the way, then finding this man who brought me to a faith that I did not have and who has stayed by me for 20 years and I do not doubt will stay by me until one or the other of us bites the big one. For a long time I couldn't understand what I did to deserve such a partner in life. I still don't but I'm not looking a gift Bear* in the mouth.

But - I'll never accept "Patient" as job title. :nah: Necessary evil, yes. Something I must do to stay well, sure. But job. (Insert wrong answer buzzer here)

*His nickname

Peridot20_Gem
07-24-2011, 03:32 AM
Kcat,

It's lovely how your fought through with your first hubby and found a man so understanding, as i'm in the same position as yourself where that's concerned.

Regarding yourself as not a patient is a good mental status to keep fighting...i find Lupus hard to live around i totally do but as long as people like yourself and other member's on the site think your way then you'll fight through it better.

It's just that we all look at life in different ways and my god life is a strong test at the best of times, wthout added issues ontop. xxx

lovedbyHim
07-24-2011, 04:58 AM
I have had several mentally and physically abusive men in my life. Finally I am set free and choose more healthy relationships. My boyfriend I have now takes very good care of me. He is my friend even when I broke up with him out of fear. He would do anything I asked of him. He is a caregiver in nature. I believe the worsening of my symptoms actually brought us closer together. When I fluctuate in weight, he never cares. If I whine about the weight, he tells me I'm beautiful no matter what. I honestly believe that he is one of the good things that came out of this mess we call lupus. I was too busy for him before. Poor guy hung in for years. I finally said I would marry him (someday). Lol

Peridot20_Gem
07-24-2011, 04:25 PM
Tammy you'll make your mind up about this marriage lark mate...bless him he's brilliant with ya and so caring by what you say but it's even better when they dow bother if your weight goes up and down like a yo yo.

Ste as told me i looked healthier at 11st but he also said could you imagine your breathing at that weight.

We're all lucky in different circumstances. xxx

lovedbyHim
07-24-2011, 07:26 PM
Tammy you'll make your mind up about this marriage lark mate...bless him he's brilliant with ya and so caring by what you say but it's even better when they dow bother if your weight goes up and down like a yo yo.

Ste as told me i looked healthier at 11st but he also said could you imagine your breathing at that weight.

We're all lucky in different circumstances. xxx

You'll be the first to know if I ever really do decide to marry. I feel like I need a valium everytime I consider it . Lol. I have it pretty good just as it is. Why spoil it with marriage? What if he changes once I say I do? Then I'm stuck with him till DEATH WE DO PART.....Even with lupus that could be a L O N G time......