u/Getpeaceogo

So let me preface by saying I've had six surgeries. I have malabsorption issues and am currently trying to fight going back on a G-tube, I was on TPN on a g-tube last year that resulted in severe septic shock. I had two bacterial infections at obviously from the last sentence turned septic.

I've had lots of hospital stays and close calls but this seriously shook me. Needless to say I am terrified of any tube sticking out of my body. Currently getting infusions of nutrients once weekly but it's not really substantially helping me.

I finally got a GI that my insurance one accepted into my primary referred me to because I feel like my surgeon is just too cut, happy and every surgery he provides me with hope that I will feel better and it always gets worse.

Case in point. Last year June I had surgery that resulted in almost a 30-day hospital stay in August, which included my six and incredibly extensive surgery.

All hopes that I would get better and I was hospitalized every single month up until January. Do I blame my surgeon? No I understand that things happened and I just got the unlucky side of things and my body just sucks.

However, I don't feel like having any surgeries unless I am literally dying, so seeking out a GI was a way of getting a second opinion that could put eyes on a very complicated anatomy after sex surgeries.

Color me incredibly surprised ( I didn't get a colonoscopy because I'm too at risk of perforation but something else that only goes to the first part of the colon although he was able to get to the very end of it.)

I have lymphocytic colitis.

Now this explains a lot of symptoms. It does not explain the malabsorption. It does not explain the intolerance to food, which I know is linked to the surgery and not having much of an intestine left. But it explains absolutely everything else and I am absolutely floored that I have been in and out of hospitals extensively to the point where I am on disability and missing big portions of my anatomy, meanwhile, the majority of my symptoms are explained by something as simple as colitis

Now I say simple because I don't really know too much about colitis. I'm going to end up looking it up and googling it, but my mom had ulcerative colitis and although I've looked it up rarely by the time I was old enough to understand she was in remission without medication.

I am floored because I cannot help but think that I could be out there living a normal happy life right now, to a certain extent, if this would have been diagnosed so much sooner.

I don't know where to go from here, My results were forwarded to my surgeon but I reached back out to my GI doctor asking about treatment and if there's a change of plan because I have an appointment scheduled with Duke motility for getting on a medication that requires tpn next year and I am just hopeful and wondering if that's even necessary and if this changes a course of my treatment.

My surgeon wanted to see me ASAP but I have a test with him I think on the 17th or 18th this month and I have to see him at the end of the test and I don't really want to see him any sooner. I'm assuming my GI sent information to my surgeon because my anatomy is so unique that he might want my surgeon to be the one to prescribe the medication, but he's also the doctor who extensively had worked me up and cut me open and made me spend. I don't know for 8 months collectively maybe 9 months collectively in a hospital. I'm not quite sure if I trust his better judgment at this moment.

Anybody here deal with colitis. Can you give me a little insight?

Edited for spelling, I do talk to text.

So let me preface by saying I've had six surgeries. I have malabsorption issues and am currently trying to fight going back on a G-tube, I was on TPN on a g-tube last year that resulted in severe septic shock. I had two bacterial infections at obviously from the last sentence turned septic.

I've had lots of hospital stays and close calls but this seriously shook me. Needless to say I am terrified of any tube sticking out of my body. Currently getting infusions of nutrients once weekly but it's not really substantially helping me.

I finally got a GI that my insurance one accepted into my primary referred me to because I feel like my surgeon is just too cut, happy and every surgery he provides me with hope that I will feel better and it always gets worse.

Case in point. Last year June I had surgery that resulted in almost a 30-day hospital stay in August, which included my six and incredibly extensive surgery.

All hopes that I would get better and I was hospitalized every single month up until January. Do I blame my surgeon? No I understand that things happened and I just got the unlucky side of things and my body just sucks.

However, I don't feel like having any surgeries unless I am literally dying, so seeking out a GI was a way of getting a second opinion that could put eyes on a very complicated anatomy after sex surgeries.

Color me incredibly surprised ( I didn't get a colonoscopy because I'm too at risk of perforation but something else that only goes to the first part of the colon although he was able to get to the very end of it.)

I have lymphocytic colitis.

Now this explains a lot of symptoms. It does not explain the malabsorption. It does not explain the intolerance to food, which I know is linked to the surgery and not having much of an intestine left. But it explains absolutely everything else and I am absolutely floored that I have been in and out of hospitals extensively to the point where I am on disability and missing big portions of my anatomy, meanwhile, the majority of my symptoms are explained by something as simple as colitis

Now I say simple because I don't really know too much about colitis. I'm going to end up looking it up and googling it, but my mom had ulcerative colitis and although I've looked it up rarely by the time I was old enough to understand she was in remission without medication.

I am floored because I cannot help but think that I could be out there living a normal happy life right now, to a certain extent, if this would have been diagnosed so much sooner.

I don't know where to go from here, My results were forwarded to my surgeon but I reached back out to my GI doctor asking about treatment and if there's a change of plan because I have an appointment scheduled with Duke motility for getting on a medication that requires tpn next year and I am just hopeful and wondering if that's even necessary and if this changes a course of my treatment.

My surgeon wanted to see me ASAP but I have a test with him I think on the 17th or 18th this month and I have to see him at the end of the test and I don't really want to see him any sooner. I'm assuming my GI sent information to my surgeon because my anatomy is so unique that he might want my surgeon to be the one to prescribe the medication, but he's also the doctor who extensively had worked me up and cut me open and made me spend. I don't know for 8 months collectively maybe 9 months collectively in a hospital. I'm not quite sure if I trust his better judgment at this moment.

Anybody here deal with colitis. Can you give me a little insight?

Edited for spelling, I do talk to text.

Looking for advice on how to have a productive conversation with my surgeon tomorrow.

I have a very complex GI history, including six abdominal surgeries (all performed by the same surgeon), short bowel syndrome, previous TPN, multiple prolonged hospitalizations for severe malnutrition, and sepsis from a central line while on TPN.

After my sixth surgery last year, I became severely deconditioned and temporarily lost my ability to walk. I've worked incredibly hard with physical therapy and my medical team and can now walk again with mobility aids.

The reason I'm posting is because I'm worried about tomorrow's appointment with my surgeon.

For the past month, I've had persistent diarrhea after previously cycling between constipation and diarrhea. I'm vomiting at least once every day. My symptoms have become severe enough that they are limiting my progress in physical therapy. Although many of my labs are still within normal limits, my albumin is low, and I'm worried because these symptoms feel very similar to the pattern that eventually led to severe malnutrition and prolonged hospitalization in the past.

My GI specialist believes my symptoms are likely multifactorial. He suspects short bowel syndrome is contributing and has also mentioned postoperative adhesions as a possibility. However, when I brought adhesions up to my surgeon previously, he dismissed the idea. I recently reviewed my operative reports and found documentation from both 2019 and 2022 showing that adhesions were present, including lysis of adhesions during surgery. I understand that having adhesions doesn't necessarily mean they're causing my current symptoms, but I was surprised to find they had been documented.

My current GI is performing a flexible sigmoidoscopy later this month because he feels a full colonoscopy would be too high risk given my surgical history. I'm also scheduled to see Duke's motility clinic next year for further management of my short bowel syndrome. In the meantime, because of how altered my anatomy is, my surgeon is really the only physician who can address the surgical side of my care.

I'm not looking to argue with him or tell him how to do his job. I also don't necessarily want another surgery. What I want is a proactive plan.

Given my history, would it be reasonable to ask questions like:

What is our plan to prevent another episode of severe malnutrition rather than waiting until I'm hospitalized again?

At what point would nutrition support (such as enteral feeding) become appropriate if I'm unable to maintain adequate nutrition orally?

What objective signs or criteria would you use to decide it's time to escalate treatment?

My boyfriend is coming to the appointment because he sees my day-to-day decline and can describe what he's observing at home.

My biggest question for physicians is this:

How can I communicate that I'm not trying to challenge my surgeon's judgment? I'm trying to work with him to develop a preventative plan before I become critically ill again. Is there a better way to frame that conversation?

How to approach a surgeon apt tomorrow with the ONE Dr who only takes my symptoms seriously when my boyfriend is talking.

By the way, I am not asking for medical advice.

Looking for advice on how to have a productive conversation with my surgeon tomorrow.

I have a very complex GI history, including six abdominal surgeries (all performed by the same surgeon), short bowel syndrome, previous TPN, multiple prolonged hospitalizations for severe malnutrition, and sepsis from a central line while on TPN.

After my sixth surgery last year, I became severely deconditioned and temporarily lost my ability to walk. I've worked incredibly hard with physical therapy and my medical team and can now walk again with mobility aids.

The reason I'm posting is because I'm worried about tomorrow's appointment with my surgeon.

For the past month, I've had persistent diarrhea after previously cycling between constipation and diarrhea. I'm vomiting at least once every day. My symptoms have become severe enough that they are limiting my progress in physical therapy. Although many of my labs are still within normal limits, my albumin is low, and I'm worried because these symptoms feel very similar to the pattern that eventually led to severe malnutrition and prolonged hospitalization in the past.

My GI specialist believes my symptoms are likely multifactorial. He suspects short bowel syndrome is contributing and has also mentioned postoperative adhesions as a possibility. However, when I brought adhesions up to my surgeon previously, he dismissed the idea. I recently reviewed my operative reports and found documentation from both 2019 and 2022 showing that adhesions were present, including lysis of adhesions during surgery. I understand that having adhesions doesn't necessarily mean they're causing my current symptoms, but I was surprised to find they had been documented.

My current GI is performing a flexible sigmoidoscopy later this month because he feels a full colonoscopy would be too high risk given my surgical history. I'm also scheduled to see Duke's motility clinic next year for further management of my short bowel syndrome. In the meantime, because of how altered my anatomy is, my surgeon is really the only physician who can address the surgical side of my care.

I'm not looking to argue with him or tell him how to do his job. I also don't necessarily want another surgery. What I want is a proactive plan.

Given my history, would it be reasonable to ask questions like:

What is our plan to prevent another episode of severe malnutrition rather than waiting until I'm hospitalized again?

At what point would nutrition support (such as enteral feeding) become appropriate if I'm unable to maintain adequate nutrition orally?

What objective signs or criteria would you use to decide it's time to escalate treatment?

My boyfriend is coming to the appointment because he sees my day-to-day decline and can describe what he's observing at home.

My biggest question for physicians is this:

How can I communicate that I'm not trying to challenge my surgeon's judgment? I'm trying to work with him to develop a preventative plan before I become critically ill again. Is there a better way to frame that conversation?

Looking for advice on how to have a productive conversation with my surgeon tomorrow.

I have a very complex GI history, including six abdominal surgeries (all performed by the same surgeon), short bowel syndrome, previous TPN, multiple prolonged hospitalizations for severe malnutrition, and sepsis from a central line while on TPN.

After my sixth surgery last year, I became severely deconditioned and temporarily lost my ability to walk. I've worked incredibly hard with physical therapy and my medical team and can now walk again with mobility aids.

The reason I'm posting is because I'm worried about tomorrow's appointment with my surgeon.

For the past month, I've had persistent diarrhea after previously cycling between constipation and diarrhea. I'm vomiting at least once every day. My symptoms have become severe enough that they are limiting my progress in physical therapy. Although many of my labs are still within normal limits, my albumin is low, and I'm worried because these symptoms feel very similar to the pattern that eventually led to severe malnutrition and prolonged hospitalization in the past.

My GI specialist believes my symptoms are likely multifactorial. He suspects short bowel syndrome is contributing and has also mentioned postoperative adhesions as a possibility. However, when I brought adhesions up to my surgeon previously, he dismissed the idea. I recently reviewed my operative reports and found documentation from both 2019 and 2022 showing that adhesions were present, including lysis of adhesions during surgery. I understand that having adhesions doesn't necessarily mean they're causing my current symptoms, but I was surprised to find they had been documented.

My current GI is performing a flexible sigmoidoscopy later this month because he feels a full colonoscopy would be too high risk given my surgical history. I'm also scheduled to see Duke's motility clinic next year for further management of my short bowel syndrome. In the meantime, because of how altered my anatomy is, my surgeon is really the only physician who can address the surgical side of my care.

I'm not looking to argue with him or tell him how to do his job. I also don't necessarily want another surgery. What I want is a proactive plan.

Given my history, would it be reasonable to ask questions like:

What is our plan to prevent another episode of severe malnutrition rather than waiting until I'm hospitalized again?

At what point would nutrition support (such as enteral feeding) become appropriate if I'm unable to maintain adequate nutrition orally?

What objective signs or criteria would you use to decide it's time to escalate treatment?

My boyfriend is coming to the appointment because he sees my day-to-day decline and can describe what he's observing at home.

My biggest question for physicians is this:

How can I communicate that I'm not trying to challenge my surgeon's judgment? I'm trying to work with him to develop a preventative plan before I become critically ill again. Is there a better way to frame that conversation?

Looking for advice on how to have a productive conversation with my surgeon tomorrow.

I have a very complex GI history, including six abdominal surgeries (all performed by the same surgeon), short bowel syndrome, previous TPN, multiple prolonged hospitalizations for severe malnutrition, and sepsis from a central line while on TPN.

After my sixth surgery last year, I became severely deconditioned and temporarily lost my ability to walk. I've worked incredibly hard with physical therapy and my medical team and can now walk again with mobility aids.

The reason I'm posting is because I'm worried about tomorrow's appointment with my surgeon.

For the past month, I've had persistent diarrhea after previously cycling between constipation and diarrhea. I'm vomiting at least once every day. My symptoms have become severe enough that they are limiting my progress in physical therapy. Although many of my labs are still within normal limits, my albumin is low, and I'm worried because these symptoms feel very similar to the pattern that eventually led to severe malnutrition and prolonged hospitalization in the past.

My GI specialist believes my symptoms are likely multifactorial. He suspects short bowel syndrome is contributing and has also mentioned postoperative adhesions as a possibility. However, when I brought adhesions up to my surgeon previously, he dismissed the idea. I recently reviewed my operative reports and found documentation from both 2019 and 2022 showing that adhesions were present, including lysis of adhesions during surgery. I understand that having adhesions doesn't necessarily mean they're causing my current symptoms, but I was surprised to find they had been documented.

My current GI is performing a flexible sigmoidoscopy later this month because he feels a full colonoscopy would be too high risk given my surgical history. I'm also scheduled to see Duke's motility clinic next year for further management of my short bowel syndrome. In the meantime, because of how altered my anatomy is, my surgeon is really the only physician who can address the surgical side of my care.

I'm not looking to argue with him or tell him how to do his job. I also don't necessarily want another surgery. What I want is a proactive plan.

Given my history, would it be reasonable to ask questions like:

What is our plan to prevent another episode of severe malnutrition rather than waiting until I'm hospitalized again?

At what point would nutrition support (such as enteral feeding) become appropriate if I'm unable to maintain adequate nutrition orally?

What objective signs or criteria would you use to decide it's time to escalate treatment?

My boyfriend is coming to the appointment because he sees my day-to-day decline and can describe what he's observing at home.

My biggest question for physicians is this:

How can I communicate that I'm not trying to challenge my surgeon's judgment? I'm trying to work with him to develop a preventative plan before I become critically ill again. Is there a better way to frame that conversation?

I'm asking a question not in regards to me but in regards to a loved one. I am not asking for medical advice. I'm just hoping to get some straight answers as depending on the source it's cited I'm getting conflicting answers from both AI and Google.

Someone close in my family had multiple serious strokes. Thankfully they got him to the hospital quickly but about an hour in and they had a massive seizure and started foaming which required them to go on ventilation and be put into a medically induced coma.

This was 11 days ago. They've removed the sedation but he's not waking up. I guess they're phrasing it as he's breathing by himself but he's unconscious and only time will tell.

If somebody does not require ventilation to breathe That means that they aren't brain dead, correct? Like in order to be brain dead you wouldn't be able to breathe by yourself right?

I guess to go along with that question, I am not in the same state and right now is not the time to go and visit, and so I am a third party informed. From the information I have it was his left side of the face that was affected and I believe the strokes were all on his right side of the brain.

Is it normal for it to take this long to wake up because of how serious things were or is this a bad sign?

I guess nobody really knows anything until they can do an assessment and that won't be able to be done until they're conscious?

When I say I'm getting third party information I mean I'm getting information from the people who are at the hospital with him so I don't doubt the information is accurate. I just want to know what to expect because none of us really do and nobody's going to ask that question right now because it's absolutely not the appropriate question to ask.

Also, he's so young, mid 30s, strokes don't run in our family, what in the world could have caused this?

Whoever decided that it was a smart idea to show test results to patients before having doctors consulted about the results really are everything that's wrong with the United States healthcare system. Obviously there's a lot worse but this is up there.

Okay so I am profoundly chronically ill. I say that to provide full context for my upcoming question. And when I say profoundly chronically ill I am referring "intestinal failure"/ Short bowel syndrome however, I did get my g-tube and tpn removed all the way back in October because I had had severe sepsis and attempting to hold off on either of those. Hopefully until this upcoming February when I get (hopefully) get approved for Teduglutide.

​

Anyways, currently my baseline is either vomiting in severe constipation or vomiting/ overflow diarrhea. Since starting birth control, my normally low blood pressure which normally runs 80 over 50s has skyrocketed to 130s/105.

​

Why is it that you keep telling us to go to the emergency room? I know my body. I know my baseline. I've also unfortunately had sepsis twice in my life. So yes, I also unfortunately know the warning signs of those and even though the birth control tricks you into thinking the high blood pressure also forgot to mention high heart rate. It might be a clue. It's really not.

​

Anyhow, had blood work done. Showed pretty highly elevated white blood count and neutrophil count monocyte counts and don't remember what it's called but whatever stands for the young neutral white blood cells.

​

So I get that's probably an indication of like an infection or something right.

​

Anyways, so I speak with my doctor and I'm like hey can I just go ahead and skip the in-person appointment cuz I'm completely exhausted my caretakers off this week and can we just go ahead and order our scripts of antibiotics in case it's bacterial? And then maybe next week. Do you like an infusion.

​

So then at that point why even bother asking me specialized questions that I'm going to answer yes to as my baseline and so you use that as an indicator that I should go to the emergency room even though I am wholeheartedly against going cuz I was hospitalized for months last year.

​

Also, emergency rooms are notorious for making you wait a stupid amount of time and then either one getting a doctor that completely dismisses you or two getting a doctor that way overacts, neither of which is helpful.

​

So basically my question is why do you keep doing it? Is it to protect you against the lawsuit?

​

Like I'm pretty confident I am not at an immediate risk of dying, which is what the emergency department is for. It's for people who are at the immediate risk of dying.

​

So why do that? And I understand why you don't want to prescribe antibiotics cuz if it's not bacterial. What's the point right? Cool. Why not schedule me? I don't know the following week for like a banana bag cuz you know I'm dehydrated at least?

​

Why not try that instead of telling me to go to the emergency room where either one I'm going to be there and catch something or two they're going to needlessly admit me which is going to. Yep you guessed put me at risk of ding ding ding catching something?

​

​

Personally, I really think it's just to avoid a lawsuit, but couldn't that just be resolved by saying my advice is to do this. However I have to say that on record meanwhile I'll go ahead and order you that banana bag next week IV fluids or at least recommend /prescribe and antiviral or something?

​

Also you are a doctor. You understand the hospital is for immediate risk of dying being a bit dehydrated and having slightly elevated blood pressure and heart rate which has a proven connection to a new medication that you've started is not an immediate risk of your life.

​

Also, sepsis requires a high fever, not a low-grade fever, a standard fever, a high grade fever. Against in the very beginning it doesn't. However, sepsis works pretty quick and I've been sick like this for about a week and a half now. So if it was sepsis I'd have already bowed out of life.

​

​

Not really mentioning anything specifically, but I do want to put a TW: figurative violence. TW: implying child sexual assault.

I've done almost 4 weeks worth of class and 1.5 days to try to stop thinking about something other than my anger. Had to wash my bed sheets cuz I've been so angry I sweat through the sheets.

I really want to beat the ever living shit out of someone. I want to beat her so badly guys.

She's a pathetic excuse for a person who deserves to rot in hell. He's a sad excuse of a person, the kind that should go under that jail. Nobody's taxes should go for paying his ass any meals.

I want to State for the record. These kids live full-time with a family member of mine that is their dad. They're amazing kids straight A in school, extracurricular activities, don't lie, and go to individual therapy weekly. He did the right thing and the two middle kids had forensic interviews today with detectives.

I know how badly he wanted to beat both of their asses but that's not what those kids need. They need support. They need love & they need a parent who can show their worth & deserve full custody of the 4 kids.

Obviously right now their ex-partners custody has been fully revoked. That being said, she told him the other day she plans to take the oldest who is not my relatives child & the youngest to a different state 2 live next month.. She's literally out of her mind. Even her own mother called said relative & told them she'll pursue custody the oldest if her daughter tries to take him.

Literally really didn't have any issues with her up until 2 days ago now I hate her so much it hurts. Pretty obvious she's a sad excuse of a mom. Anyways I found out 2 days ago and I'm so obsessively angry.

Not sure I can wait for Friday when I normally see my. I am on disability so I do not have extraordinary money to pay out of pocket 2 see someone online nor do I have a great health coverage that covers telehealth & l can't wait till Friday.

Asking for any free or cheap options for handling anger, be it a website or anything. Every site I've checked is behind a pretty hefty paywall.

Also it is not helpful that I have been out of my ADHD medication for a month and a half but thankfully found a pharmacy that has it and they will have it filled tomorrow. So I will be taking it and hopefully I can come down because I don't know if you know this about ADHD or not but people think it means you can't focus. And yeah on things you don't like. It's really hard to focus and do things but on things you like or for example obsess about; you hyper focus on. Right now I am hyper focused on beating her ass, not quite sure if I made that clear so I just wanted to make that clear.

So yeah, any resources specifically free or low pay resources or websites that you find very helpful for anger or that even have free exercises that help with anger or obsessive? Thoughts, honestly I would really really love right now.

Also when I say I'm disabled I mean physically so that's why I can't beat her ass because if it was mental damn right, I'd beat her ass. In fact, I'd have an excuse right? Okay for anybody who gets upset about that statement calm the fuck down. Not saying anything bad about mental disabilities just clarifying my specific disability is physical so despite how bad I want to inflict violence it's just not optional for me.

Also, I'm not in my teens or twenties anymore so fighting is just something I wouldn't do.

It is heartbreaking when you realize how broken our healthcare system truly is. We often just accept it, but the reality is staggering when you look at how insurance denials actually play out:

'We regret to inform you that your loved one’s critical care claim has been denied. Following a thorough administrative review by our staff, who are qualified and hold medical degrees, though not in the specialty required to understand your loved one's specific disease.

We have chosen to overrule their personal doctor's treatment plan. We truly value you as a customer and strive to provide the best care. Please feel free to complete a satisfaction survey. As a reminder, you have 60 days to dispute this decision, though please note that if the patient passes away during the review process, the case will be automatically closed. Thank you for choosing us for your healthcare needs. Let us know if you have any further questions or concerns, we strive to be the best company and value our members."

It's so absurd, America. the best country in the world. Wonder how that conversation will go when you meet your maker.

Sorry & thanks for coming to my ted talk. This discussion is now closed in preparation for the Canes game tonight!

My first caretaker got replaced because she kept falling asleep on the job and I was actually assisting her more than she was assisting me. When I say helping her I mean setting up logins, resetting password, setting up direct deposits, etcetera, etc. When I'd ask her like hey can you help me? For example, clean the fridge, for example, do some physical therapy exercises. She'd suddenly get dizzy you or wasn't feeling well and needing to sit down.

It's my first experience with the caretaker so I didn't know what to expect until another Home Health specialist that I'm work with. Saw what was happening and pulled me aside and pointed it out.

That being said, the company was amazing about it. Had a new caretaker. It was supposed to start last week. She was having car trouble. Completely understand. I had originally asked her if she could start Wednesday instead of Monday anyways so no biggie

Ended up getting in touch with me saying her car was still out of commission so I told her hey do you want to start Monday? She said yes.

Called her on the phone yesterday. She asked who I was when she answered. I explained she said oh I'm with my family. Let me call you back. She never called me back.

Supposed to be here at 11:00 this morning. I waited till 11:15 and I called her once straight to voicemail. Contacted the agency they were unable to reach her. I got emotional and said you know what. I don't want her to come forget it. They agreed said that was irresponsible. They're not going to send her.

They are now sending somebody else that's starting tomorrow. They've given me reassurance. This person is going to show up. They're going to have reliable transportation and they're going to be good with my dog.

I have my dog on Xanax as needed so that when somebody knew comes over a part of my health team he is docile and calm because he tends to get protective. Though he is never shown any bit of aggression. I still do it out of an abundance of caution.

I also at least went my first caretaker and have it prepared for this new one. Have a few pages written down that I plan on going over before we do anything explaining you know first with my dog. If you're ever uncomfortable let me know. I will absolutely put them outside or in a different room.

Secondly, letting him know they're free to eat or drink anything in my house. Just let me know beforehand. They can use the bathroom without asking. You know. Pick up phone calls have conversations as long as it's not interfering with what I need to get on.

That I plan on giving them advance notice to any appointment times. I will ask them to be taking me to.

If whether it's bad and they don't feel comfortable, just call me and of course they can stay at home. They don't have to come in same thing as if they're sick.

And then I have written down what's going on with me and what I could use help with while they are here.

I also plan on letting them know certain things. I expect them to respect my privacy like for example, my relationship with my boyfriend who lives with me. The reason why I'm having a caretaker through my insurance instead of having my boyfriend caretake for me is because he works two jobs while I just recently got approved for disability.

I ordered a raspberry Danish hoping that the caretaker will like it and the reason why I have everything right now ahead of time is so that we can discuss anything and if there's any issues whether it's boundaries, whether it's something they don't do to assist me, something that they're uncomfortable with, etc. We can take it head on.

It is hard to accept help, right? I think that's the truth for most people. So having the first caretaker take advantage of me. The second caretaker did not show up. I kind of feel a bit defeated and emotional.

Has anybody gone through anything like this? I know that they do get paid a lot less than they should be. I know that I get it through Medicaid so again the pay is not wonderful but the agency I use does pay above average, however, they are honest that sometimes turn over rates are high.

Is this something that's normal? Like having a caretaker fall asleep on you like refusing to help you with certain daily activities and like them just not showing up?

I honestly think I'm a pretty open person who's very considerate and for them it should be like an easier client because I don't expect them to one. Do anything for me just do things with me until I understand that life happens and never would expect them to sacrifice certain things to come into work.

Another issue with my first caretaker is she did not like my boyfriend and she did not take my redirection when she would bring it up and I would tell her I don't want to talk about this. I'm uncomfortable talking about it with you. She would keep mentioning stuff like I need to leave him unlike pointing out things like well he at time to lay in bed. Why did he not have time to help you before I come over etc etc

To be honest I don't think that that's their business. I don't ask for them to do anything for him obviously. Nor would I ever. And like I said he works two jobs. He's out of the house most days so while he's here. Yeah he does sleep. I don't understand why that is their business unless I'm missing something

I guess I'm just seeing if anybody else can relate and I'm just looking for some encouragement and support cuz I'm feeling emotionally drained by this.