KidsHappen Posted April 11, 2021 Share Posted April 11, 2021 I had neuropathy and basically all of my B vitamins got so depleted that I started suffering severe nerve damage. By the time we called the emergency room I could no longer stand, I was numb from my waist and elbows down and had not urinated in more than 24 hours. when I first showed up at the hospital they weren't sure I was going to recover. I spent 10 days in the hospital before they transferred me here. They are not adaquetly managing my insomnia and pain even though I talked to the doctor about how I was successfully managing it at home so now I am headed into a manic phase which really pisses me off because it was the only thing I have managed to keep under control. It is affecting my motivation to stay here and work on improving my strength and fine motor control. I will talk to the doctor again next time I see her and tell her all of this again but I don't know what I am going to do if she doesn't make the adjustments I need. They are predicting at least 10 more days here and I am not sure I can go that long without breaking into a full blown manic spell which would also seriously interfere with my ability to complete therapy. They are waking me up at 5:30 in the morning even though I have told them not to. Once they wake me I can't go back to sleep so I am currently only getting 6 hours sleep per night. As soon as they wake me my pain levels start increasing. So I am getting 3 hours less sleep than normal and at least 3 hours more pain. I have to be in a lot of pain to ask for my pain meds so they are going up and down all day whereas when I was at home I took my pain meds at set times though out the day to keep my pain under control. What do you do when your dr is not managing you as well as they could be? 1 63 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted April 11, 2021 Share Posted April 11, 2021 No advice but I’m sorry things are so rough. 1 Quote Link to comment Share on other sites More sharing options...
Soror Posted April 11, 2021 Share Posted April 11, 2021 I'm so sorry. I hope someone here has some good info for you, that sounds absolutely miserable. Quote Link to comment Share on other sites More sharing options...
Hannah Posted April 11, 2021 Share Posted April 11, 2021 So sorry to hear that Kidshappen. Would it help writing this down for the doctor to read instead of just telling her? 6 Quote Link to comment Share on other sites More sharing options...
Starr Posted April 11, 2021 Share Posted April 11, 2021 This is so hard. We used to switch med times in the hospital so we didn't have to wake people and the shift they got switched to would change them back. 😞 Have you tried talking to the supervisor or nurse in charge? 3 Quote Link to comment Share on other sites More sharing options...
Jenny in Florida Posted April 11, 2021 Share Posted April 11, 2021 Oh, man, I'm sorry. I hate being in the hospital, in large part because of the lack of control such as you're describing. I also deal with neuropathy, although nothing like yours, so I can relate on a couple of levels. I can only say that I hope you can successfully advocate for yourself (or recruit someone to do it for you) to make the adjustments you need and that this experience significantly improves your health. Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 11, 2021 Share Posted April 11, 2021 Sometimes your insurance can assign someone to you that can help advocate. I had a relative who was recently in rehab, and they took away her motorized wheelchair!!! She raised a stink and got it back, but I know that her insurance also assigned her some kind of care coordinator. I don't know if she ended up needing that person, but it was nice that she had a backup. I would go over the head of anyone that showed themselves unwilling to help you solve this problem. Sometimes a lower rung person is being rigid, but sometimes they are acting on perceived orders/pressure from a boss that they are misapplying to a situation. Or they just lack the authority to change policy. 4 Quote Link to comment Share on other sites More sharing options...
Katy Posted April 11, 2021 Share Posted April 11, 2021 You don’t lose your rights in a rehab center. Just because the nurses want you up at 5:30 so the day shift doesn’t have to be responsible for helping get you dressed and to breakfast doesn’t mean you don’t have every right to sleep in as late as you want. You may however lose the ability to get help as fast as you want it if all the aides are in a cafeteria feeding people during breakfast. You can insist that they put it in your care plan to not wake you up until 9. 8:30 may not be possible if they are understaffed and feeding people breakfast though. 4 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted April 11, 2021 Share Posted April 11, 2021 I wonder if you can get your psych involved? It sounds like your doctor is under-responding to the interplay of diagnoses. So sorry--holding you in prayer. 6 Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted April 11, 2021 Share Posted April 11, 2021 Also, family members can be strong and effective advocates. When my parents were struggling in care, I would be the bad cop and other relatives would be the good cops so the patient did not have to vulnerable. How awful you are going through this, I am so sorry. I hope you recover quickly and can be discharged ASAP. 6 Quote Link to comment Share on other sites More sharing options...
Ditto Posted April 11, 2021 Share Posted April 11, 2021 I am thinking of you. Lots of gentle hugs as well. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted April 11, 2021 Share Posted April 11, 2021 Get everyone involved. I was in the hospital for 7 days in mid March and that was bad enough for early morning waking. I got released to home and home health. Can you bd released to home and home health? Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted April 11, 2021 Share Posted April 11, 2021 What do I do? I call the patient advocate line for that facility. I force a conversation between staff and doctors and we update the case plan. I would emphasize the point that if you go into a manic state it's going to affect your ability to do rehab. Best wishes. 5 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted April 11, 2021 Share Posted April 11, 2021 I'm sorry it's being so rough - I hope you can start getting better. Quote Link to comment Share on other sites More sharing options...
saraha Posted April 11, 2021 Share Posted April 11, 2021 No advice but ((((kidshappen)))) Quote Link to comment Share on other sites More sharing options...
Amethyst Posted April 11, 2021 Share Posted April 11, 2021 No advice, but I hope you are feeling better soon and get some resolution to the current situations. Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted April 12, 2021 Share Posted April 12, 2021 Hugs Thinking of you Quote Link to comment Share on other sites More sharing options...
Anne Posted April 12, 2021 Share Posted April 12, 2021 I’m so sorry!! I’m praying for you and sending hugs.... Anne Quote Link to comment Share on other sites More sharing options...
fraidycat Posted April 12, 2021 Share Posted April 12, 2021 I'm so sorry you are having such a rough time and getting inadequate care. Get an advocate who will be the squeaky wheel. Either a family member, friend, or facility staff member whose job it is to advocate for and co-ordinate patient care. Have them Demand treatment and respect for your whole self, not just the one thing they are treating you for. 5:30 a.m. wake-up time for a person in pain is beyond ridiculous and short-sighted! Are they, a health care facility, unaware if the massive importance of sleep and rest over just about everything else when it comes to recuperation? I'm angry on your behalf. I hope you are able to be heard and have your needs met soon. Big hugs! 4 Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted April 12, 2021 Share Posted April 12, 2021 I am so sorry you are going through a rough time and not getting great care. I agree having someone advocate with and for you. I hope that you had better night. Wishing you a smooth recovery. Sending lots of gentle hugs. Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted April 12, 2021 Share Posted April 12, 2021 I hope you have got some sleep and you’re feeling a little better today Quote Link to comment Share on other sites More sharing options...
Scarlett Posted April 13, 2021 Share Posted April 13, 2021 1 hour ago, Ausmumof3 said: I hope you have got some sleep and you’re feeling a little better today Me too. I don’t think @KidsHappenhas posted since the original post. I hope you are ok. 2 1 Quote Link to comment Share on other sites More sharing options...
math teacher Posted April 13, 2021 Share Posted April 13, 2021 ((KidsHappen)) I hope and pray that you are getting better treatment. 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted April 13, 2021 Share Posted April 13, 2021 Many gentle hugs and prayers... Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted April 13, 2021 Share Posted April 13, 2021 @KidsHappen Hope you are okay. Praying for you today. Quote Link to comment Share on other sites More sharing options...
***** Posted April 13, 2021 Share Posted April 13, 2021 So sorry you are going through this, sending hugs and prayers. Quote Link to comment Share on other sites More sharing options...
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