How Do I Help Jess?

[susiestar]

Right now Jess is huddled in bed trying not to cry. She hurts. It is BAD. 9 or higher on the pain scale from her neck down to her thighs. NO medications.

ALL she has are cold packs or hot packs, whichever she wants.

When the nurses/aides/therapists/whoevers are here she tells them it is a 9 or an 8 on the pain scale but she is smiling and cooperative with them for the most part.

She got up and walked around and chatted pleasantly with them when they wanted to walk her to the library and then took her all over the first floor as well (library is not on the first floor.). She hurt like Hades but never let it show.

I do not think that they are going to really treat the pain because she is always nice and smiling and cooperative. To get right down to it, she just doesn't act like she is in pain.

I do NOT doubt that she is in severe pain. I don't know if they do. They act like she just needs to get moving and stay moving and all of this will go away. As if we haven't already tried that, DUH!

HOW do I get her to show the people how much she is hurting. She will show ME after they leave, but she is doing all she can to hide it from them.

This started back when Wiz was abusing her, but then it became a habit, an unconscious behavior. HOW do I get her to really SHOW them how miserable she is? I am afraid that they won't treat this effectively because she doesn't LOOK like she is in pain. She is very private about it and feels embarrassed if she shows pain to anyone. I have talked to her about it many times and it just doesn't seem to be remembered, or something she is able to do.

She has had therapy for this, to process the abuse and the habits that she developed as a result of the abuse. This is the one thing that just does not seem to change.

I am terribly afraid she is this way because I am. Most of the time I pretend I don't hurt because it gets old when people ask how you are and you always want to say "terrible, I feel like doo doo.". So I say I am fine or okay or whatever. I do NOT cry in front of people. I have always been like this - even as a little kid. I would go hide to cry. I can cry around husband, it was one of the things that let me know that he was the one for me. I also have cried in front of 2 friends. Since high school I have almost never cried in front of my mom. I just cannot. Period. If I get choked up about something I hold it back as much as I can until I can leave. I have had to work hard on this with my own doctors and it isn't easy.

Any ideas/suggestions would be helpful. Thanks.

 

[HaoZi]

You're dealing with pain from the drive down and all, yes? Let it show, let her see that strong women can show pain without totally being vulnerable. Or maybe slyly encourage some primal scream therapy?

 

[nvts]

Hey! Are the docs and therapists aware of her history from Wiz? Since there are many of them that have psychiatric backgrounds, you could have one of them contact her therapist at home that can confirm that this has been an issue in the past. Otherwise, you're going to have to get tough with her and tell her that they're not going to take her seriously and all of this will be for nothing.

Hope this helps! We're all praying for her - let her know that we all cry when we hurt, but can pick ourselves up afterward. THAT'S a strong woman...not someone who won't allow themselves to grow!

Beth

 

[Shari]

The only thing I can think of is surveilence, and how sneaky....I don't even like the idea.

The suggestion of letting yourself fall apart might be a good one. She might just follow suit.

 

[Hound dog]

Susie, I'm afraid you're going to have to have a heart to heart with the girl. That's all their is too it.

Svcking it up and grinning and baring it are wonderful.........to a point. When it deters from proper dxing and treatment, it's time to cut the tough act and let how you feel show.

I'm going to tell you this from a profession stand point. If Jess does not look like she is in pain to the staff.......eventually they will stop believing she is in pain and instead believe it's an act for attention or whatever. Ok, not everyone believes you have to be writhing to be in pain........but unless a staff member knows what chronic pain is like........they're gong to take her at face value. And if that face is grinning and taking walks that are putting her in agony but not complaining or showing it........they're going to think she's faking it.

Then they'll stop listening to a word either one of you have to say. Her chances at a proper diagnosis drop. Her chances for proper treatment drop.

If she hurts, you need to tell her that while in the hospital she has no reason to hold it back. They need to see how she is feeling, not just to hear it. If it's too painful for a trip to the library, no matter how badly she wants to go, have her ask for a wheelchair or someone go for her.

Seriously. This is no time for the stiff upper lip routine.

I had to have this talk with Nichole who does the same thing. (she got it from me who used to do it until my mom, also a nurse, drummed it into my head to show how I feel to medication pros) She was in renal failure by the time she got it through her head she had to show them, not just tell them. ugh!

There is a time and a place to put on the brave face and just deal. The hospital is not that place.

((hugs))

 

[Hound dog]

You will have to pound it into her head that if she wants to get better, the only way to do it is to get over the embarrassment and show them how badly she's hurting and feeling.

Ok..........done now. lol I think.

 

[KTMom91]

Lisa's right, though I do understand what you're saying about the smile and the "fine, thanks." I do the same thing, because you're right, it's draining to say how bad you're hurting all the time. Unfortunately, the only way for Jess to get a proper diagnosis is to let it all hang out, as uncomfortable as it is. Miss KT alternates between melodrama/hypochondria and "I'm fine, everything's great," so I never know exactly what's going on.

Many hugs to you and Jess, and I hope she's able to really let the nurses know how she feels.

 

[DammitJanet]

Tell Jess that I think it is quite normal for people with chronic pain to have that stiff upper lip thing going on. We really cant sit around all the time moaning and griping to everyone about how awful we feel because it gets old even to us much less everyone we come in contact with constantly so we tend to just grin and bare it. I know I can be feeling like death warmed over and if someone asks me how I am, its just oh...Im fine...lol. I mean really, this past weekend I tripped in a hole and think I have torn something in my knee and I can hardly walk on it. I can limp with extreme pain from my bedroom to the kitchen and back again but if asked...oh Im okay...lmao. The pain docs asked me on Monday what my pain level was...I told them about a 5 all over but my knee was really hurting...about a 8 there!

I just never complain. I dont cry. If I am crying, someone better really watch out because something is very very wrong. Tony has been with me in the ER before and I was in so much pain I had tears running down my face but I wasnt making a sound. He ran to the desk and told them they had to do something for me because I lived with chronic pain 24/7 and he had never seen my cry from it before.

 

[susiestar]

I have had the heart to heart over this many times. The therapist worked with this from way back when the abuse from Wiz was happening. My mom had to work with me on it too, but I was in my 20's. I may let her read this. I had a talk with the nurses tonight because Jess was hiding under covers crying with all the lights out and they came in to insist she take a shower. I made her do it, but went in and helped her. The water here does NOT get hot and there is no way to stop up the tub. The water is hotter from the tub spout than from the shower spigot. No clue why, but it is COLD from the shower. I rarely help her in the shower, but she was shaking so dang hard and in so much pain it was horrible.

Tomorrow they are doing a lot of PT and Occupational Therapist (OT) and other things. We talked tonight and will talk more tomorrow about it. I do think the 3 cheerful days have hurt her chances for a good diagnosis, but all is not lost. I just have to keep pounding this into her head.

Thanks all.

 

[Josie]

Susie, I am not sure if anything will get them to do much more. Definitely encourage her to show her pain.

However, when my daughter was in the hospital a year ago, with severe pain, she looked like she felt bad, she told them she felt bad, and they wouldn't even give her Tylenol or Advil. When they did their procedure, which did cause her pain to be worse, and she said she didn't want to do it because it made her feel worse, they actually said to me, "So she is anxious because she thinks it is going to hurt?" I had to point out that she KNEW it was going to hurt because she had already had it done earlier that day.

She did not smile or talk much, even to me. She did not get out of bed to go around the hospital. She didn't even watch much TV. She slept a lot. Her pain level was a 9. When they did the procedure, she said her pain was off the chart.

They think she was depressed and not in pain. Even after I asked them if they were happy and smiling when they were sick.

I hope you have a better experience with getting some pain management. If I had it to do again, I might make a big scene myself about demanding some pain medications for her. I don't know, because, honestly, I think then they would have thought I was wanting attention, too.

 

[Marcie Mac]

Susie, can you not remove yourself from the scene for a day or so? If she has to take a shower, make the nurses help her, not you. If she is having a bad night, she will have to call the nurses to handle it. Have them set up a video recorder in her room, have them check on her hourly during the night.

If they are not seeing anything when they are there, and only get reports from you on what is happening when you are in the room with her and they are not around, that doesn't bode well for them giving her an accurate diagnosis. And you don't want them thinking well, she is ok except for when mom is around cause you know where they are going to go with that.

Good luck to you and Jess

Marcie

 

[hearts and roses]

Susie, can you not remove yourself from the scene for a day or so? If she has to take a shower, make the nurses help her, not you. If she is having a bad night, she will have to call the nurses to handle it. Have them set up a video recorder in her room, have them check on her hourly during the night. If they are not seeing anything when they are there, and only get reports from you on what is happening when you are in the room with her and they are not around, that doesn't bode well for them giving her an accurate diagnosis. And you don't want them thinking well, she is ok except for when mom is around cause you know where they are going to go with that.

Excellent idea! Is this possible Susie? Perhaps Jess will let her guard down when she doesn't have you there and only has to deal with the staff? Hugs to you both -

 

[DammitJanet]

Thats a very good idea Marcie. I know that when I was in the hospital and was so sick, I was much more child-like and there was no way anyone could think I was making things up. Well, I think at one point they may have thought I was just not wanting to work as hard as I could have but that all went out the window when they pushed me too hard and I fell out and they found the blood clots. Then they realized there was a physical reason I couldnt manage to do more. But they never doubted my pain because it was obvious.

 

[svengandhi]

How about taping her with a small recorder that she doesn't know about and playing it for the doctors and nurses. Tell them she'll never admit how she feels to anyone but you but here it is.

Good luck.

 

[susiestar]

They had her on video for an entire day with the EEG. She acted sick, was incredibly pale (made Caspar the ghost look tan, per one of the nurses), and they kept asking her if she was cold because she was shaking. When I see the video I see a person in pain. Somehow they don't.

They don't see MY pain. Mostly it likely isn't visible, but I cannot walk. I hobble. Bent over, holding on to the railing part of the time, very short steps, if I go farther than the next room I often put whatever I need to carry on the wheelchair seat and lean, heavily, on the chair. My knees click when I stand up or walk, even one doctor commented on it, but they do not recognize it as signs of pain. I think maybe they are idiots.

She did a MUCH better job of showing her pain today. Had a migraine, caught it at the beginning. Did a good job telling the nurse. She described the pain well, said the headache was a 3 and growing, but her back, neck, shoulders and legs were a 9 and not getting better. They took her to PT and Occupational Therapist (OT) and Breakfast Group (all the kids on the floor eat together and spend some time together) without me. Her walk changed dramatically, to me, after just the breakfast group. Shorter steps, not fluid, and she held on to more railings. They make her wear a stiff canvas belt if she is out of bed and having it around her stomach as tight as they require makes all her back muscles spasm more and upsets her stomach. The muscles are so tight that it squeezes her innards and upsets things. Her tummy, lungs, intestines don't have as much room to do their things so they get cranky. This is what two specialists, a urologist and an ER doctor have told us. Poor kid has to stop and work to consciously relax her muscles in her core or she cannot PEE. Have YOU ever had to work hard to relax muscles to pee? I do, but only because my back is so messed up. Normal people do NOT have to do this.

It is yet another thing they are ignoring. Another sign of real PAIN.

I am proud of how she showed her pain. She worked hard to do it. I did let her see that she does have some responsibiility in this, and showing her pain is part of it, as is talking to the docs. She first thought I meant the lack of real help was all her fault, and was a bit angry with me. I explained that it is NOT all her fault, but she IS responsible for communicating with them. NOT AT ALL is is all her fault, but she does have responsibilites in this. She calmed down, saw my point and actually agreed. This took less than a minute to get her to understand. She is more than willing to do what they want, to at least try it. But we already had a therapist who had her tell herself she would not shake, she would be all better today, it would not hurt today, over and over into a mirror. It didn't work then and I cannot see why it will work now or why any doctor would think it would work anyway. But it is what the doctor said.

We are most likely leaving tomorrow. I will update when we get home most likely. I am pretty ****** off by this and may tell the ins co that it is bogus. Unless they come up with some real help tomorrow. At least show the poor kid some mercy and give her back the muscle relaxers or some pain medications. IF you really believe it is anxiety then give her some anxiety medications for crying out loud. I just don't think it will happen.

Thanks for all the ideas. They would not let me leave her alone her overnight. Not at all. They don't even really want me to leave the hospital. I can if I insist on it, but they want me here in her room.

 

[Josie]

I am sorry this doesn't seem to be working out. It is a shock to go to the hospital and find there is no help there. I hope you are wrong and they do come up with something helpful today.

Was it during this hospital stay that they had her look in the mirror and tell herself she wouldn't shake?

Until you have experienced it, it is hard to believe that doctors can be so uncaring and arrogant. To me it is arrogant to think something is all in a patient's head if their symptoms don't fall neatly into one of the checklists of symptoms. With the looking in the mirror and talking to herself, it sounds like they are on that path.

I think it is best that you don't leave her alone with them anyway. Who knows what they might do or say to her if you weren't there?

While you are there, I would ask the nurses to make sure to note in her chart that she is so pale, if you can. My daughter had muscle twitches that you could see through the blankets that a nurse saw. However, there is no note of this in the chart, just that "parent reports muscle twitches" that were not detected on the EEG video. I'm not sure if this will matter in the end, but it is documentation that someone else saw it, if you can get it.

I am still hoping they will come through with something helpful before you leave.