February 22, 2005

One Step Forward

I am into day six of my three month work restriction and what am I doing? I have signed up with every get paid to do surveys at home service there is out there. Not sure if I will make any money at it but I will feel like I am trying to earn an income and I can do it at my own pace. Saturday and Sunday I hardly got out of bed-I hurt so bad all over-we had alot of rain and I have been paying for it ever since. Then I caught a cold-well not just any cold-it has decided to find out what is in my chest so it has came home to roost there.

My parents want me to call my doctor about it but I think she gets so tired of hearing from me that she could just scream. It is not my habit to bother anyone never has been, and now it seems as if I am imposing on everyone. My kids, my husband, my boss, my doctor. I am sure they have had alot of adjusting to do also.

I just hope the Cleveland Clinic can figure out what is wrong with me and put me on the right track. Every time I think things are getting better-I have a setback. It is like that old saying-one step forward and two steps backwards. That is how I feel right now.

I did get all of my housework done-I did it in small stages and took alot of breaks but after all was said and done-it looked like my house again!! That in itself makes you feel better I think.

My husband has to do turn arounds all week that means he will not be home until Thursday. I am hoping to get alot of rest wit the kids at school and him at work

Right now the only one loving me being home all the time is my dog. He has not whined, chewed on anyting or anything-he has been so good-he is a total mommas boy and when I leave he flips out. I think I will call the vet and ask him what to do about that. Everyone else can leave and he is fine bt if I leave he lays by the door and whines the entire time I am gone except he gets up long enough to chew up the last thing I touched before I left. When I was in the hospital my husband said no one could sleep because he paced back and forth in front of the door and howled. (he is a husky) So they were all doubly relieved when I got to come home-lol.

May update later if I decide to call the doc about the chest cold that is turning into bronchitis.

Keep smiling :)

Posted by Lisa on February 22, 2005 2:42 AM

Comments

Hang in there Lisa. I know that you have a long road ahead of you, but sometimes strangers like me stop by to say hello and to wish you well.

I posted a comment on your January 5 post. I found your site with a Google search and I used some of your quotes for an article I wrote today. I almost forgot but I added a link to your site to give you credit for the quotes. I wanted to say thank you again in case you do not read the earlier comment.

My prayers and hopes are with you.

Posted by: Harvey Young at February 22, 2005 11:48 AM

I know it's such a hard headset to put on after all these years of being the caretaker and busy bee.

You said,"It is not my habit to bother anyone never has been, and now it seems as if I am imposing on everyone. My kids, my husband, my boss, my doctor. I am sure they have had alot of adjusting to do also."

It is the DISEASE that is imposing on everyone. You will only be "imposing" on others if you don't learn to manage it to the best of your abilities and take proactive measures when you can to avoid it getting out of control. And the adjustment only works if you are the role model yourself. When you are better, I had a lot of good feedback from regular "family meeting times" when we could all express how unfortunate it was that we'd been placed in a family with one member having this crummy disease, let everyone talk about what burdens or inconveniences it causes, and get it off our chests. And not exclude myself from the discussion; but not monopolize it either.

Because you are not the only one living with a disease. Your whole family is. And when you get out of this flare up, and things start to settle down, you'll all be figuring out ways to keep this wolf at bay as much as possible for the best possilbe family life for all of you. /nd if you have family members that see you are headed toward a flare up, you'll have to accept their comments with acceptance and think about all that they are saying, because all your lives are so affected by this disease.

And it really does work, but you've got to work hard to have it happen.

As for your doctor, doctors don't like chronically sick patients in general. That's their personality defect, and it sucks big time. But you are not defective for regularly reporting changes in your body so that they can help keep you out of danger. If they don't see that right now you are a case of possible double pneumonia or severe bronchial infection about to happen with your ANA titers and sed rate, then they are the "sick" ones, not you. And you will have to call in regularly until they "see" what ever sypmtoms they are looking for. Their paradigm of medicine and the role of a doctor is off, not your calls for medical intervention. And eventually, you may work out a system of "prophylactic" medical intervention, so that in taking a drug in a small quantity before the infection sets in, you have already stopped it before it got the chance. And that way, you can avoid your immune system into going into overdrive, and avoid flare ups.

But it still takes years to learn to manage this disease, and it's not an easy journey. Nor will it go away. You really have to learn how to "listen" to what your body is telling you.

And so you WILL have to inconvenience yourself to do this as it is a new role. To act as an outside observer to one's own disease and focus on ourselves is not an easy learning task, when we are raised to take care of others. You're going to have to put yourself at the top of that list now, to be able to be there as much as you can for the ones you are taking care of .

Boy, do I sound like the bitchy know it all from hell or what? I'm a little too stoned on meds to phrase things any differntly right now and have to go crash myself. Sorry if the tone of this is out of line. I wish I could have said it all in a more compassionalte, warm fuzzy way, but this disease takes tough love. And the toughest love I had to deal out was to myself. And it took decades. Hope you're a quicker learner than I was. You're a great lady. Strong and brave. But even soldiers have to take cat naps. And you are fighting a battle right now, and there is no getting around it...........

Posted by: Cath at February 23, 2005 11:54 AM