Why can't it be like this all the time? Updated | Arthritis Information

I have been doing pretty well, on this prednisone flare taper. Not as well as when I have the remicade in me, but well enough. Still have a little bit of swelling going on, but it goes away by the time I wake up in the morning and comes back in the evening time.

I have just felt well. Have not felt like this for over a month. I can see bones again!

I just have not been sleeping at night, the pred keeps me awake. And I am craving sugar even more now. Hard to not eat it. It just drives me nuts when I try not to give in. The other night... I was craving sugar... I made a sugar sandwich. And it was GOOOD!

Well... visited my mommy again yesterday. She is doing ok. Just her lungs are not doing right and her incision is still infected. She goes back to her GP Friday and if the incision is not looking better they are going to put her in the hospital until it clears up. She had a lung Dr appt today. I hope they can help her. She struggles to breathe. And she can hardly talk without getting out of breath.

Please keep my mommy in your prayers.

Every time I visit her I want to cry because she just looks so misrable and helpless. And she always looks like she has had a bad day.

joonie2008-07-31 20:28:30Your mom is in my prayers! I hope her appointment went well today.

I know what you mean about pred. I have only taken 4 of my first (and only) 6 pill day (4 mg each, 20 for one day only). I still can't bend my wrist but it seems like my stomach did better today (I think I may have inflammatory bowel issues) and the tender part in my shoulder is much better. I am anxious to wake up in the morning and see if I can actually bend my wrist, although RD said don't expect it. We're still not sure if damage is permanent, and I am taking steroids for my shoulder, not my wrist.

Even though my ROM is the same I was so excited at work, I felt a bone in my hand i hadn't felt since December! But still lots of swelling, Im not on a big enough dose to do rid of all of it. But also everything is popping more and a different part of my hand is hurting. I had a huge flare post steroids the last time so fingers crossed.

My first MTX injection is Monday, I pray to god that works! I don't remember what it feels like to feel completely "well."

My dad is on maintenance pred for addison's. Actually they can't figure him out a lot of the time, he has weird endocrine/autoimmune things going on. Anyway his brother has RA and I'm wondering if my dad does too but can't tell b/c of the pred.

Joonie-

Oh that prednisone and it's sugar craving side effect! I am on a low enough dose that it is not so bad anymore but I had such a thing for cookies there for awhile!

I never had a sugar sandwich tho-LMAO!

OOPs and sorry your mom is still not feeling well. I will say some prayers tonight for her healing.Joonie ~ huggles ~~ Cathyglad you can see bones, Joonie!!

I will keep your mom in my thoughts

Hugs,

babs

Prayers out for you and your mom.

Thank you for keeping my mom in your prayers, it is greatly appreciated!

My sister just called me about 30 mins ago. They put my mom back in the hospital. She has fluid in her lungs, more fluid in her right than her left. While she is there they are going to clean up her incision area. My sister said it sounded like when they clean the incision area they will be putting her to sleep, she was not sure.

My sister said my mom cried when she got ready to leave. Telling my sister she does not want to be a burden to anyone. My sister told her she was not a burden, and she would rather take care of her then not have her around.

I think my mom said that because my oldest brother, was watching after her this whole week. And when we went to visit her yesterday, she would ask for something and my brother would make like a huff sound like she was bothering him. Which was just wrong! I did not say anything, but I know how my mom feels.

I remember when my oldest brother had a brain tumor and our mom took care of him for months! And she never complained or even made sounds when she had to do something for him. He even broke down her couch, because that is where he slept.

I will call my mom when she is able to talk. Right now with the fluid in her lungs she has a hard time talking. She needs all the oxygen she can get!

Ok... so while I was on the phone with my sister said told me I looked like I was doing well RA wise, when she saw me last night. She said I looked almost "normal". I was like yep and felt almost "normal" too. She asked if I had gotten my infusion, I told her no, it was the high dose prednisone I am on for a few days. She said well that stuff works good for you. Then I explained to her about the pred usage and all.

Then she was talking about having to hire people where she works. I told her she could hire me. She said she wished she could, but that she knew I would not be able to keep up on my bad days. I told her I could if I pushed myself to and then I would adapt to it. She said no. I told when I got to be able to take Remicade again, if she would consider letting me work for her. She said she would. But by the time I get back to doing remicade again she will not be needing dependable help.

Let's hope this month will be the month of Dr visits that will crack the case of the mystery rapid pulse! Extra prayers for your mom going up! Hmm I remember those same sounds & looks when my family had to care for me. It hurt my feelings so bad. I thought of how I always took care of everyone and now that I needed someone to care for me I was a burden. I will never get over that.

I'm glad you are feeling so good you feel you want to work. I hope your sister can find something for you when the time comes!