It Finally Got 2 Me | Arthritis Information

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So... I spent most of my day, Friday, laying in bed until daughter & hubby got home around 4pm. Hubby told me that I was to go fix my sisters computer. I went and got a shower and had to have hubby help me get dressed because the ball & sockets of both shoulders were inflammed and I felt weak, PLUS my elbows were also inflammed (denial). So he helps me get dressed and off to in-laws house to drop off FIL old computer. Of course, I am the last one in the door, knees still have hard swell in them.

 
We leave there and go over my sisters house... where I sit on a soft ass couch for almost an hour & half. By about an hour into it sitting on the couch I can feel my neck & back starting to ache more. I told hubby I thought it was time to go. Then my niece remembered something she wanted him to do for her on the computer. So... I sit and wait another 30 mins.
 
Ya'll are thinking why not make your way to the door and make it known it is time to leave. Well... Because I can't get off the couch by myself and I needed hubby to help me off the couch. What I me by help is pull me forward and hold on to me until I am balanced.
 
Ok... on ward...
 
We leave my sisters house, and hubby decides he is hungry. We got to Wendy's and I sit down as soon as we get in there because the line is long. Hubby comes with our food I realize... I can't get my elbows to bend enough to reach my mouth and I can't raise my arms high enough to help make up the difference in non-extending elbows. Finally... I try to bend my very painful, stiff, tense neck down toward my hands to take a bite of my sandwich. I bearly get a bite as my jaw is inflammed as well, which does not let me open my mouth wide enough to fit much between my teeth.  I get a small bite chew it and then when I swallowed it sent pain straight to my neck. So... I gave up eating. Sat there and watched hubby & son eat.
 
**Yeah I should have realized I couldn't eat anything back when we were at my sisters house and she wanted me to try some kind of dish and she went to give me a bite she couldn't get the fork of food pass my teeth. She was like open your mouth wider, I said "I did." She said "oh".**
 
While I sat there I can feel my neck/shoulder/upper back area getting much more painful. Painful to the point that I started doing the nervous leg shake and rocking back and forth all at the same time. I seem to do that when I am in a lot of pain and have no way to get rid of the pain at that time. I do not know why I do it, I just know I do it.
 
Then... we leave there and go to Wal-Mart which is in the same shopping area, because that is where we were suppose to of been hours ago. Then I just broke down and started crying and told hubby to go in without me. By this time the pain was in my ribs, coller bones, and sternum. He asked why. Then I started cussing at him and told him why. Then before he left he rubbed my neck a little to help loosen it up and all it did was hurt worse.
 
I sat in the car 15 mins then came home and went straight to bed and hubby gave me a pain pill & muscle relaxer.
 
How did it finally get to me? I cried because the pain was so awful.
 
I feel a little better now, after laying down for a while. But everything still hurts and is hard to move around from all the swelling I got going on. Joonie, I think crying when you are in that much pain is very, very normal. In fact, I think if you weren't crying there would be something wrong with you, honey.

Don't be so tough on yourself, darl. Take it from someone who does that all the time to myself, it's not worth it.

Obviously, you just weren't up to doing all of that in one outing but it's hard not too especially when your family is wanting too. It's difficult to say no, or even recognise that we need too. We keep think that we will just be okay. But we aren't. Tuning into your body and reading it is something we learn I think. We also have other people's expectations to deal with and that is not easy.

Take care of yourself, sweetie. Be gentle to Joonie. If other people don't understand, well then they don't but the most important thing you can do is to take care of you. Sometimes that will mean saying no.

I think that what really got to you is that you were hurting and not up to all of this and the people you love were oblivious to the obvious. That's what gets to me and makes me cry.
 
Hope you are feeling better today.
joonie..this is a call your doctor situation....
 
feel better soon
I have never been that bad and I am so sorry to hear you are going through that Joonie.  How scary.
 
Honest to God if it got to where trying to eat something hurt that bad it would have scared me and I would have went to an ER or something.  I know I had trouble eating and pain so bad I wanted to lay on RR tracks with my jaw (later found out OA ate the joint away and they replaced it with my rib).  But never experienced hurting my neck to swollow my food.
 
Is this something you have went through before and know why it does it so you knew it was okay to let it go??  Or is this normal RA and this is what we have to look forward too??
Shykymom
Joonie has advanced JRA.  ON top of current active disease she is dealing with a lifetime of damage. 
You cannot compare her situation with someone diagnosed in much more recent times.  The medication and treatment protocals are much different today than they were when she was first diagnosed.  So no, hopefully you will not have to look forward to what she is dealing with
Aw, Joonie.  I hope this is a better day for ya.  That sounds just terrible, what you went through. 

 Thanks Buckeye for the information.

Gosh Joonie I really wish I had some way to help you.  Some little tricks that would work.  I am sorry you are going through this and sorry I don't know of any help.  But feel free to e me if you ever need a shoulder.  I can listen good if not anything else.
 
 

dear joonie,

how awful!   i am so sorry.   that is way too much to have to do.   even on a good day i do not plan that much and you felt like ____!   tell them no, take a nap while they are gone with meds and have them bring you back food.   nobody understands unless they have this.    but really "Just Say No."
Joonie, I hope you are feeling some better today,  I was in pain just reading your post. Thinking of you, LauraJoonie, I hope you are having a better day today.  I agree to call your doctor, and please be careful eating, choose soup or smoothies or yogurt or applesauce or something until your jaw is okay.  You need nourishment, but I know from TMJ there is a choking hazard when you can't chew and/or your jaw gets stuck.  But make sure you eat! 

((((((((((Joonie))))))))))

First off bunches of hugs because you are not feeling good.  I feel so bad for you, I have never had pain that bad.  I agree, a visit to the doctor is in order, your remicade treatments need to have a higher dosage or be closer.
 
Geez I am having a stupid situation at work and when I read your post I said geez Maria you are being so stupid about a stupid problem, look this is a real problem!!! 
 
I hope you feel better real soon, I will be thinking of you.
 
Do what Suzanne says eat some applesauce or soup, also have hubby make you a shake and put a couple of eggs and a banana in it.  You need protein and vitamins. 
 
AND CALL YOUR RD!!!!!!!!!!!!!!!
 
Hugs,
 
Maria

 

Joonie you've been crusing towards this for a few weeks now.....I've noticed it in your posts *A LOT*
 
buckeye is right, it's time to call the doc again. It's time to be another squeaky wheel!!!
Thanks for all of your concerns.
 
I slept all day. I finally went to sleep about 4am, got back up at 5an to make sure hubby made it to work on time. Went back to sleep a few mins after he left. Then got woke up again by daughter around 10am. Then woke up again when hubby got home around 11:15am. Hubby went on a wake up spree. Son was still asleep because he woke up a few mins after hubby left for work and turned on his movie and fell asleep watching it.
 
It does not feel like my other meds I took last night are even helping me with this inflammation. Not even the 10mg of pred feels like it is helping me.
 
I did not call RD because I slept all day. I feel better mentally with having all that sleep.
 
I can hold out until Monday. It is probably this weather we are having that is making this worse than it normally would be. I hurt in placed I have not hurt in since being on morew than 5mg of pred. Wrists, toes, hands.
 
Hope everyone is doing well.Well, I'm glad you're doing better now but, wow.  What a tough time you had.  I wouldn't wish that on anyone.  I hope the doctor can help you on Monday so you don't have to deal with that again.  You poor sweet thing. I hope you get to feelling better soon. I wish i had some words of wisdom but i do not. I pray that you get to feelling better. But yes sometimes we have to say no i just can't do it.Joonie, I am sorry you are hurting so much. I agree with the others, just say "no" when you are in that much pain. Hubby should have noticed just how bad you were and stepped in on your behalf. Rest as much as you can until Monday and you can call your Rheumy. When my pain is over the top, I take a super hot shower and crawl into bed with electric blankie on high and sleeep, sleep, sleep.
hugs!
deb

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