Terriby confused | Arthritis Information

Lovie, I'm glad you understand what I mean about options. This is very hard to explain to family and friends. My kids get it though because they've seen everything I've gone through. They don't understand through the facts, but through their hearts.

I really feel like I have good doctors who are trying hard. They certainly are compassionate. I just hate getting bad news when I've been working so hard to get better. I hate to be defeated in anything. I want to be optimistic but this has been rough from the very start. My RD has really fought to make me better. I guess today just proves how complicated it can all get. It makes me think of the six blind men trying to figure out what an elephant is. That's RA, the whole autoimmune thing. And the more experts you throw into the mix, the more confusing it gets. But hey, its' not every day you get to be the elephant.

I'm so very glad that I found all of you. For the first time, I don't feel adrift in all of this alone.

I feel that thankfulness too. I've been here over a year now and before that I had supportive family but no real friends like here.

All of my friends know very little about my life with RA and this place is like an oasis for me. I try really hard not to be the one that complains all the time that's why it's so nice to come here and talk about how I'm feeling and feel like I've some how expressed it without feeling like such a sicky person. Even when you have those that love and understand the disease....they wish a day would pass without having to think about it. We don't have that luxury....we all have that in common.

dbmy3, I could use that magic wand. Mine broke some time ago. I think it was from overload.

Crunchy, called my friends, cried, then slept on it as you suggested.

I do feel better about this morning. But I am quite nervous. I have to give my boss the letter from the doctor this morning about working from home. Her mood has been quite unpredicatable lately. I fear I just might lose my job over this. Hey, they don't even want to adjust my workstation. What do you think are my chances are at further accomodation.

She will probably just say that maybe I need to take the month off work. That means no income. If she goes with that attitude, then I'm off looking for whatever work I can find and close to home.

So I am scared this morning. Wouldn't be such a problem, but as a contractor, they don't have to have a reason to let you go.

Rox,

I'll try to be strong and that she should accomodate me. But we gone round and round on this before.

Yes, water therapy is back on the schedule. I have a pool right out my back door now. I just got to see if my old swim suit fits. That's what scarying the most.

If I get to work from home, it will be much easier to get the exercise.

I understand freaking out. It is a long process and I am terrified of it. But you have the two of you in on it. One thing that might be encouraging is to note that your disability gets locked in at a higher rate that you get at retirement.

I wish he was close, though. It must be terribly hard.

Well, I'm off to brave the big, bad world and to see how my life might change this day. I was certainly on freak out yesterday. But I should know better than to schedule three appointments in one day. It is too much emotionally. I knew the news was going to be what it was. Just didn't want to hear.

Oh, how I would love to hear, "Oh, how healthy you are. What a fine specimin of humanity. It's a miracle! Your cured!"

Not holding my breath on that one.

I was listening to a Sharon Stone interview today and I liked what she said about her sudden stardom. At first, she said, it was like being in the room with a roaring lion every day. Then, she decided that she just had to face it, one day at a time. Then, it was one minute at a time. Now, it is part of her life.

A guess that's where we are, minute at a time.

Okay, I have lots of news. I went to work today and had to tell my boss about working from home for 30 days. Man, she does a problem with it. Well, she says I can do it. But then, she's not sure she can even give me the 30 hours minimum I need to keep my insurance.

Oh, maybe I could car pool. That's through the company, it costs a month and I would have to drive 20 minutes minimum to get to the car pool, so that really doesn't help.

She doesn't see how working from home is any better. She doesn't get the fatigue, being able to move around, not glued to the computer screen thing. And, she's not willing to change any of my work tasks to that I don't have to be in front of the computer all the time. Well, she thinks all I can do is writing and graphics. What else could I do? Obviously, I'm not very bright in her opinion.

I had her exact job two places before with a lot more responsibility than she has. I told her a had a better setup at home--for instance a much larger monitor. I need it because my eyes are also affected. But I didn't go into that today.

So, she's willing to get a bigger monitor and a thumb drive (portable storage thingy). Well, that would certainly help. But couldn't I come in every other day? Gee whiz!

I stayed at work all day today to try and get things set up for me to be able to work from home. Tomorrow they are going to finally, finally do my workstation evaluation. They have to have three people come and do this. Guess they are scared of ADA. So, I have work on-site tomorrow and we have a staff meeting on Friday. There's goes working from home this week.

On one level, she gets it. She has been watching me down hill for a long time. The doctors are telling I can't keep sitting all day in front of a computer. So, she wants to know what I am going to be able to do at the end of 30 days. Like I know?

I am so stressed about all this. But my daughter had some really good advice. She said, "Mom, you are just too sick right now to make any decisions. If you take the thirty days and work at home, you will probably feel good enough to know what to do."

Then, my son came over, and he said something really great too. He said, "You can't look at what time it is on a watch while you're still standing in the dark." Gee, I think that fits all of us to some degree.

After the two of them gave me a good talking to, I felt much better. My son says, don't do disability. You're just not ready to give up yet. I told him I didn't think disability was giving up. But then, I thought about what I want to do. I want to write and I want to paint. I don't want to stop working. I just don't want to work like I'm doing now. It hurts so much.

And that's the hard part, finding a solution to that. But he is confident that I will work it out. (My kids think I can perform miracles. Boy, do I have them fooled!)

Oh, one cool thing is that my job shop said that I didn't have make the 30 hours a week for a month and then if it lasted longer than that, they would try and help me work something out. They have been awesome!

So, maybe this will help me transition to something else.

Good news? I don't know. But I love my two cheerleaders. They do keep me going.

You know Deanna, it IS good news...it is not the ultimate super solution or anything, but it's a start in the right direction. Its not bad news right? I think you got something accomplished and you got some answers in a relatively short ammount of time which is a rare event for us. That is good too. So celebrate your small victory!

My daughter and I have this deal (since she has so many health problems too), she can't give up if I don't. She exercised that one on me last night. See what happens when you teach these kids things. So, I can't give up.