Darlene aka monkey me

I hun, I read you post to chaya, I am so sorry. You sound absolutely awful. Is it the Fibro that is the culprit? Isn't there anything the doctor can do to help you?

You're in my prayers

love

carol

Oh thank you so much for your care and concern. I really do not know what is causing the severe body pain. I have had fibro for many years but have never ever felt anything like this.

In the past year, when I was dx with UCTD an then Lupus, things have changed. The fevers for one thing. Right now I never go below 99.4. I have had fever more often than not in the last year. With this new change, the pain has just increased and increased.

I am unsure if its the c. diff causing the lupus to flare, or the c. diff causing the pain, or the lupus flaring on its own.

I am going to my rheumy today at 3pm. Her office is so wonderful. When I told them that I was having a really hard time, they got me in the next day, which is amazing because this woman is booked out months.

So, I will wait until three. The pain is somewhat less right now, but it still feels as if every nerve receptor on my skin is screaming, and it screams loud enough to wake up the ones in my muscles and joints too.

Thank you so much for your kindess. It is so nice to know someone is thinking about me and praying for me.

My hubby who is usually really good was so crabby this morning. The kitchen was a mess, dishes everywhere, no laundry done, he needs to leave for work...I mean I am kind of a neat freak, and this place looks like one of those houses you see on COPS when the camera is zooming from corner to corner revealing one piled up horror after another. I am in bed, unable to really move until my body fully wakes up. I am freezing and have skin chills from fever. I have a Nintendo DS that my husband and kids got me with some fun little games on it, and I was playing that and I just stopped and felt like a COMPLETE FAILURE. My entire house is crumbling around me....nothing that should get done is getting done, and I am playing nintendo in bed? And to top it off I am mean and snappy because of the pain, and because I feel like no one understands how hard I have to try just to breath.


They say they understand, they act like they do sometimes, but I know that they really have no idea.



And then I think of our sweet Barbara Lee, and what she goes through, and how strong she is. And I think about the advice I would give her about feeling like a loser, and I try to take the advice myself.

She is always helping me!

And I think of my whole Lupusie family, and know that they know, and I say a prayer of thanks...and it gets me through.

I know that those close to us have to get so tired of it. I really just wish that all of my family (mom, dad, sis, hubby) could feel what I felt for 10 minutes. I would never wish it ont hem for a lifetime, but just ten minutes. If they could feel what I felt and know that it is a constant thing, I think they would be more tolerant.

Course the way the human brain works, they would forget it, just like women forget the horrid pain of childbirth.

Thank you for letting me rant! A good rant works wonders to get you through a few minutes doesnt it?

Love and Hugs,
Darlene

Thanks Kristin for the information. My rheumy was very helpful today, she spent a lot of time with me. Basically she wants me to start back up on the Plaquenil on as high a dose as I can tolerate, even though it may make things a little more complicated in the c. diff area.

If I am unable to tolerate Plaquenil she will put me on methotrexate. She hates to do anything that is going to supress my immune system when I am fighting such a severe infection.

I was also prescribed Amitryptaline. I have not been sleeping well at all, and she is hoping it may help with some of my pain as well.

She is concerned that the Amitryptaline may make the Sjorgens a bit worse as I am having a whole bunch of trouble with no saliva.

Hippi if you read this, I know you started Amitryptaline, how is it working for you and did you experience dry mouth?

Thanks again all for getting me through this.

Love and Hugs,
Darlene

Darlene, I'm especially glad that you have a good rheumy who will get you in when you're having more problems than usual. I hope you can tolerate the additional plaquenil and that the amitriptyline helps as well.

You talked about Barbara Lee and about reflecting on all she's going through. I wonder if you'd judge her if her house were a mess. Would you really expect her to be up cleaning her house till everything was spick and span? We're all so hard on ourselves but so understanding of each other. I so understand what you're going through. I hope all of us here can help you give yourself permission to stay in bed and play nintendo and take a well needed break from life until you feel like coming out from under the covers. And to do it without feeling guilty. You body needs the rest.

Barbara Lee is such a dear and so are you. I'm glad she's able to help you. It's great that you were able to vent. I've found that writing has a real healing effect on me and I should do it more often. I hope you fever goes away and that your pain subsides. Take good care of yourself Darlene. We love you.

Pat

Darlene, Havn't heard from you in a while. Have you had any success with the new med? I know it's hard to feel good about yourself when you feel so crummy but I hope you are beating the pants off those nintendo games!
love ya
carol