Your frustrations are exactly how I would feel in the same situation. Knowing things from both a medical professional and patient perspective makes for a unique take on things. I am an emergency DVM and work overnights. I spent way too much time inpatient at a new hospital the last thirty days (fourteen going on fifteen days between two stays). I got readmitted two weeks after a nine day stay and even with it documented in my chart what IV fluid and tube feed schedules I use at home and while inpatient I had an overnight hospitalist try to stand firm about not ordering the liter of fluids I get overnight (I did not have any fluids or tube feeds all day). I was on night two and when the nurse said that the overnight doctor was probably afraid to make a misstep" I was a very polite but ticked off patient. I told them that I wanted to speak with the provider and guess what? They ordered the fluids. I am in charge of other DVM's inpatients at work and if I saw documentation that meshed with what was being requested (by a patient to doctor in my case or owner/veterinary nurse to veterinarian) and I see no contraindications it is a no brainer. As far as appointments with new doctors I am at the point I do not want to waste time. If I do not get a good feeling the first go around I switch. Moving from Nebraska to Connecticut was harsh.
There seems to be an overwhelming number of Health care providers who are incompetent right now. I totally feel your frustration right now and hate to admit that I am feeling the same. Pretty sure I have blockage and my primary cares answer is miralax, stool softener and fluids 🙄. I can’t get in with my GI for a month, went to the ER because pain was off the charts(I have had 30 surgeries including a rectocele repair, this is pretty up there) the ER does a CT and says oh you have a navel orange size hemorrhagic cyst where your ovaries used to be. I said I’ve had cyst before this pain is different and I haven’t 💩 in 2 weeks and have been taking miralax and stool softeners, along with my normal medication of Linzess. Well CT only saw the cyst so that’s all that’s wrong. 🤯🤬 Called GI and told them hey can you have the dr check my CT that was done at the same hospital I already signed release forms, to which they say he will check them at your appointment in a month. Yes I am in tears with you, but we will persevere somehow. Praying for you
You just summarized what almost every person has experienced!! Phone calls that don't get returned, mixed messages, more than one answer to a question, aps that don't work....and doctors that are more concerned with the computer in front of them than the actual patient. I feel so bad for you, a long term illness is such a drain on you. I hope it gets better. Get a new doctor!!
We just came off of 2 weeks dealing with mixed messages for hubby's meds because nurse was out of office (so app was worthless) and front desk can't relay a message to save their own lives (how many times do I need to say 3 month supply for mail order until you understand this?!? and still end up getting sent a one month supply 🤦♀️🤦♀️🤦♀️).
No your not being picky, some doctors & nurses don't care about patients..I had an appointment and my Dr said "I read the notes, your gona take this prescription, and your gona do this and that...then I told the Dr" wait do you not want to hear what I'm feeling how and when this started happening? , No you don't need to tell me what you have I know what you have.. I was there for literally 5minutes..but in the waiting room 1.45 minutes..🤔. Drs & nurses need to be more sensitive to their patients we r people.. not all nurses or Dr are like this but some...
No need to be sorry! I’m in the medical field as well but I’m also a patient. I recently went to the ER and one of the nurses just took my arm without telling me she was going to insert an IV and I was like “what are you doing?” I feel that people in the medical field forget that they are working with people not just a checklist.
🇬🇧 OMG I can’t believe the difficulty your having with your medication etc. Here in the UK I have a personal Stoma nurse who is located at my local hospital who takes my calls and sorts out any problems I may have regarding my colostomy products and liaisons with my GP (general practitioner) I can obtain blood work and medication anytime through my doctor’s surgery and all my stoma products are delivered to my home on a monthly basis and are also pre cut to my stoma size for me. All of this for FREE GOD BLESS THE NHS. Shame on the USA for treating its citizens like this.
I agree. I'm an American living in France and here patients just don't have to endure the obstacles, challenges and frustrations that Maggie has had to with her health provider and the overall Healthcare system in the US. I am so very sorry for all that Maggie and Zak are having to go through. Totally unneccesary suffering. Lisa
@@lwc3310 i am french and working for the french healthcare system. I knew the US system was diffrent from ours but I didn't know it was so difficult to get treatment for a chronic illness.
@@lwc3310 That must be why so many folks flock to the US for the latest and most sophisticated treatments. Like my cousins from Canada. The US health care has it's faults however it's still the best in the world.
Absolutely can relate. Don’t apologize. You’re 100% right, it shouldn’t be your job as the patient to make sure HCPs do their jobs properly. It is exhausting. And frustrating.
This is why I am going to nursing school now, in my thirties, as a mom and patient myself of multiple chronic illnesses. Patient care is HUGE. It is the point of healthcare! We have to do better. You deserve better.
We need more people like you getting into nursing for the RIGHT reason, sending you prayers, it’s inspiring that you are not letting your chronic illness keep you from doing this!❤️
As a fellow RN I can say this new computer box checking is such BS that there is no more compassionate care with the actual patient. It’s frustrating being a knowledged provider knowing you are not getting proper care and having to do way more leg work than you should. Seems providers don’t go the extra mile and you are just a chart.
I used to be a nurse here in uk the standard of nursing and lack of empathy and kindness has spread across the pond I’m almost grateful my fibromyalgia hastened my retirement as the stress of working to ever increasing deteriorating standards was impacting my mental health
Oh Mags, I hear you sister! It's hard not to get emotional when you're not feeling well and it's hard when you're doctor that you love retires, and it's hard when the new doctor basically sucks. I think we've all been there from time to time. All I can say is hang in there and feel better! Oh, and find a new GI doc! ❤
Maggie, I want to wrap my arms around you in one giant hug and cry with you ❤️ I am so sorry you are dealing with such horrendous health care. This story is all too familiar when it comes to healthcare and it troubles me deeply. Your feelings are valid, your frustration is valid, your needs are valid. I am so sorry you've had to push and push to advocate for your needs, it should not be this difficult to get the medications we require to manage our condition. Shame on that provider for not doing more for you as a patient, as a human being. I hope things begin to turn around for you, and I hope you can find a provider who truly looks at you wholistically as a patient. I'm cheering for you, you're a warrior, you've got this ❤️
You know in nursing school they taught us that "your tensing up" is code for I'm horrible at blood draws. I'm assuming she wasn't taught that same lesson.
Don’t apologize for your venting! You needed to let it out. I’m sending you hugs! Are there any other GI docs in your area. Maybe you should talk to people you worked with when you were having a few months ago? Maybe she was a nurse practitioner. I’m going to say a prayer for you if that’s OK with you. Go rest up, you’re over extending yourself.
I hope this lady is not an NP..she would give us a bad name. IF she is an NP frankly her case should have been referred to a medical doctor just due to Maggie’s complexity (multiple surgeries, longevity and severity of disease…etc) also she would have had a collaborative physician to consult with prior to her appointment just to prepare..the nurse could have done some case management to coordinate medications ALL of it and if needed a PsyD if the person is really struggling with stress, anxiety, a dietitian for food counseling to help troubleshoot problems like obstruction..just so much can be done with a provider whose head is in the game and has a heart that cares..
Hi Mqggie. I started watching your videos a few weeks ago. I don't have Chron's disease but I have radiation colitis and rectal cancer. Your videos have been helpful and I enjoy watching your beautiful dogs and your work in the farm. You don't have to apologize and you have all the right to vent. You are not been picky. There are a lot of people working in the medical field that should be working doing something else. I have surgery on July 6th to remove the tumor and to have a colostomy done and in the last two weeks, I had headaches dealing with the lab place and with my primary doctor's office, just to be able to get clearance for my surgery. It shouldn't be that way. They are there to help you not for you to do half of the job for them. I hope you find a new good GI doctor and I hope you feel completely better very soon. Hang in there. You are warrior! An inspiration to many. All the best to you, your husband, your doggies and all the animals in the farm ❤️
Maggie, it truly is frustrating! I have been waiting 6+ days for the office to call me to schedule for colonoscopy and enteroscopy! I just wanted it scheduled, prep done and the procedures to be over for answers! Take care of yourself and there is nothing wrong with venting!
Insurance decided that my Humera can only be given in 1 month refill instead of 3 months at a time. Specialty pharmacy cannot refill since I now need a 1 month prescription instead of 3. Well my GI medical practice seems unable to respond to my phone calls, the fax messages from specialty pharmacy. Been without Humera now for almost 2 months & of course I am now in a NASTY flare. End of rant.
Oh Maggie, I understand exactly what you’re going through. I’m on a bunch of meds for my back pain, and you can’t just quit those kinds of medications cold turkey. It’s beyond frustrating and maddening. I could write you a book about everything I’ve been through since I was 16, and I’m now 35. Thanks for opening up to us about what’s going on, and never be sorry for having to vent. I recently had 9 vials of blood work done at LabCorp and they were not nice to me at all. I had one girl who did it perfectly and felt no pain. Then the next time I went, the lady just jabbed the needle in and I started to cry as well. It takes a lot for me to cry when it comes to pain, so when I do cry, my family knows it must be really bad. I’m so sorry you’re going through this, as well as the many people on here who also knows what it’s like. Hang in there!!
I just wrote a huge story as to why I was made to quit, mostly likely similar meds, cold turkey to miscommunication and being treated like hell. I know your pain and I am so so sorry.
There’s nothing worse than HAVING to get a new doctor when you have had a good one before. Keep the faith and hang in there ok. So sorry you have to go through this. Thank God for Zach. 😊😊
We pay astronomical prices for terrible care. I’ve been really sick in a third world country and got better care than I ever got here. And it cost a lot less. It’s insane. Why we don’t demand change is beyond me.
Gosh Maggie, I wish I could explain in few words how the past few weeks have been just this for me. Fighting healthcare providers tooth and nail over simple but very important things. I'm so sorry you've been through so much recently. I hope you're able to mentally recover as quickly as possible. Sending good vibes
Had a doctor tell me “we’re going to do all kinds of pill cams and endoscopies” - I never saw him again. I knew he was all about the volume and I had really mild symptoms. It’s okay to be picky.
It always breaks my heart seeing people deal with the USA health system. Like, yeah, universal where I am isn't totally totally free but like.. Damn. I hope you can get in with someone good for you.
❤️ reminds me of the appointment I went to because I was feeling sick for over a month. I wouldn’t leave his office until he did some tests. Then he was sorry.. good for him! I’ve had to fire a few doctors. Not worth it! Hang in there!! A new doc is needed for sure, your not too picky or a complaining patient. Your awesome! Thanks for sharing.
I am a professional pt and dealing with doctors is like herding cats. I have so many doctors in different systems and I have to make sure they talk and I didn’t go to medical school so I make it up as I go along. That causes me to get really sick more than I should. My life does not matter to most of my providers.
I’m glad you make these videos, small chance that some one somewhere might listen and make changes to how they operate. I wish more people could appreciate the knock on effects of their actions/inaction.
My Gastroparsis does that to me, worse pain than having birth. Makes me roll into a ball and just cry, I get pain in my back and in my front. It burns really bad!!
You need to start interviewing for a new IB doctor, one that listens to you. I'm a heart patient and I had a provider that never listened to my heart for over a hear...Yep, I fired him and found a doctor I love.
😔 I know how you feel, sometimes it feels like it never stops. Hope you’re feeling better now. You’ve gotten me through some very hard times; I appreciate you.
Does anyone have suggestions for staying hydrated without further messing up the gut? I have a family member who passed out last week from dehydration but is afraid to drink Gatorade or anything with lots of ingredients. We're trying to make our own drink with salt, magnesium, and potassium? They are able to drink water and eat some. No diagnosis, it's a months wait to see a GI doctor.
Hey! I started watching you a while ago you’re such a sweety! I’m so sorry you suffer so much! But, you have such a positive outlook on things! God help her!! Don’t let these stupid dr. take advantage of your sweet, good, soft heart. Ugh! Some dr. Are just awful!!! Go somewhere else! Don’t put up with bs!! And, it’s really therapeutic to talk it out!! You are awesome!!!
I totally get it. I have been passed around from doctor to doctor. Recently my feeding tube broke and I went 6 days without food/nutrition until I could be fit in for emergency surgery. The other great one is the endocrinologist that tells me I don’t have hypoglycemic episodes despite the reading on my glucometer. I am going to Mayo Clinic in two weeks hopefully getting answers.
Sorry I was late to the chat. But you are not wrong. You need to call the lab clinic and complain to them about the treatment you received. As for the doctor, I think I'd find a new one asap. I can not stand a doctor who won't take the time to listen or care about their patients. I have had a problem with our doctors office and getting refills filled. There have been times I've had to call the clinic multiple times to get them, they say they will check and send them to the pharmacy and they don't. Recently I was told my doctor was no longer with the clinic she ran with her husband. So I called one day to make an appointment to so I could get new scripts. When I mentioned her not being there anymore, they said "oh she's here". What? Either way I got her new number called and made the appointment. In that appointment I told her of our troubles to get refills from her nurses and her husbands. She was shocked to hear about it. She said she would do something about it and even gave me her cell phone number and told me to text her if I had any problems. We haven't had one since. Many years ago I got locked in a doctors office when the doctor forgot I was waiting in the exam room. I had a horrible migraine at the time, but it wasn't the only reason why I was there. I wasn't found until I opened the exam room door a little and a nurse who was still there, saw me and got him. It's a very long story about the whole experience, but when I went to leave that's when I realized the clinic was closed and everyone was gone. I changed doctors at my first chance and never looked back that jerk.
I feel you. My RA doctor retired however they assigned a colleague automatically so that my Humira wouldn’t get interrupted. I don’t like the new doc. Wasn’t in love with the original one but she was thorough and took labs, X-rays, MRIs. I stopped Humira because of the pandemic and I still have 2 more pens (citrate free) that I’m happy to donate to you so you can have on hand. My pharmacist messed up an order and thought I took it once a week rather than biweekly so I ended up with extra until they fixed it all. I don’t find Humira helpful for me. This new doc spends less than 5 minutes with me…unreal. When I was on Humira I needed to go every 3 months so I called to schedule my 3 month appointment and they gave me an appointment for 9 months later! I asked why since I’m on this med and I’m on a 3 month rotation and they were like, nope, that’s the next appointment and I said ok, then I’ll find another doctor, thanks. Doctors nurse called me the next day apologizing and somehow got a message that I was going to a new doctor. I said I was since he didn’t have the capacity to see me every 3 months which is typical with this med. she made the next 2 appointments for me. But I’m still looking for another doctor because I’m cranky and in pain EVERY DAY and if I strike out with this one I’m done. I’ll just live like this. Can’t take rude medical workers and it’s best they don’t get rude with me because I have a SHARP tongue! Stay strong girl! You’ve got this and you have all your followers to lift you when you’re down ❤️
You are totally justified in everything you told us in this video. You're right, you need to get another Dr that specializes in your health issues. The snarky office staff didn't help at all. These people, Dr's & snarky office staff WORK FOR YOU. That's how you have to look at it. 🙂
Hi you have all the right to complain you are a patient and these people need to do there jobs that's what they get paid for. Sorry you had to go through that and I'm sorry your not feeling well May God Bless you and Prayers for fast healing. Love you guys. Prayers always. Get Well Soon.
You are right to feel as you do. You shouldn't have to be a squeaky wheel, you shouldn't have to be your own health advocate. More and more doctors and their staff seem so incompetent! I am constantly falling through the cracks. I feel for you when a good doctor retires its awful. Hug your hubby and dogs, I'll pray you have a better night.
You are NOT wrong for venting sweet lady!! I vented a bit to my husband earlier today (actually yesterday now) as I've been super frustrated, my mobility is limited, I've lost all of my teeth due to chemo and radiation, so I have to get dentures, but I have a few teeth on the bottom of my mouth that are just too painful to extract with local novacaine, so I have to go to an oral surgeon for sedation in order to get those teeth out, then I start wearing dentures!!! I SO very much feel for youm please try and get a new GI doctor, and if you have a situation like you did at the lab again, praying you don't, ask to speak to a supervisor, and make sure Zak is with you, as your advocate, if necessary. It's SO sad that we, as, sicko feeling like crap patients, have to oversee and advocate everything, but with the way our healthcare system is, we pretty much do. I cancelled an appt yesterday with my oncologist, it was a 6 month check up, I've been in remission for years and I just couldn't pull myself together to go, I am doing what I feel I need to, and until I get my mouth straightened around, I can't deal with much else. Do yourself a huge favor and take an entire day for just YOU, everything else can wait 24 hours, rest, watch a funny movie, get hugs from Zak, whatever YOU need . You are so strong, but even us strong people need a break every so often. Sorry this is so long, but I definitely understand how you feel and just wanted to share some love and support with you. Take good care!! ❤❤❤
When I was 11 and first starting to try and get a diagnosis my pediatrician told me that my leg and back pain was just growing pains after only doing an x-ray of my legs and checking for scoliosis in my back. My mom being the amazing mother she is didn’t buy that shit and took me to a leg specialist who ordered a full body scan which found a cyst and fluid in my spine and two bulging disks in my spine against my sciatic nerve.... and I’m now also diagnosed with endometriosis now so yeah, six doctors later and I’m managing my symptoms now xD
I’ve had doctors like that, and I’ve practically had to teach them about gastroparesis, short gut, and EoE. Then I have to explain how treating those illnesses together is extremely complex. I am not a doc, and I feel like I shouldn’t have to make them do their job. I’m so nervous because I just moved and I have to get a brand new team… which means training a new team to deal with everything, an IR team that has to understand if they don’t use the right meds I will have a ptsd freak out during the procedure from bad docs in the past. I understand how you feel, and I think that these docs need to pay attention. I’m a zebra patient and it’s like no matter how much I explain to them that my body does weird stuff they still try to compare me to a person with a normal GI system.
At my dr’s office they have it wrote in my chart that I absolutely will not allow a certain phlebotomist take my blood. The only and only time she did she was dropping things on the floor, picking them up with her gloved hand, threw them away and never once changed her gloves. I think I’m super veiny yet when I had a colonoscopy done a month ago it took 4 nurses plus the vein finder to put In my IV. Then all I got for two weeks at work was oh honey what happened to your arms?
I totally get how this feels... im in the UK, but every single time I put in a prescription for meds and continence supplies I order it online, I specifically put in every comment box ring me if there's any issues... at least once a month there's a problem and don't call, so I have to order meds, 2 days later ring the drs, and two days later ring the pharmacy see if its ready, they dont seem to get the stress x
It's sick that these experiences are so common. I have had multiple experiences like this. Doctors get angry that we do our own research, that we push for treatments, that we question them, that we actually request that they spend the full 15 whole minutes with us for our appointments instead of letting them skip out in 3 minutes. We often get labelled as "difficult," but that's not it. Those are the patients who have been burned by the medical system. You want us to be your advocate? Then be ours. Otherwise, don't be surprised if you get more and more "difficult" patients as you continue to burn your fellow humans. I'm sorry that this happened to you, and I hope that you are able to find another specialist. There are good docs out there, but boy are they hard to find.
No problems with the nhs get my delivery’s every month with the bags already cut from next week got my stoma nurse at the hospital who I can ring and talk to she always rings me back I’ve had no problems with the nhs they have saved my life yet again god bless them all
You put into words exactly what I'm going through now. You expect to go into the room and talk with someone that knows more than you do. Most of the time, you have to lead them by the nose to get to any result at all. It is very frustrating to give a list of symptoms that concern you, and be told "I think it's fine". I'm not paying them to "think" it's fine. I'm paying them to KNOW it's fine! and no, you're not being too picky at all.
OOOOOOOOOH YES!!!!! I can MOST DEF relate to the indifference they have when it comes to you NEEDING your medicine. its like "I can DIE if I don't get this prescription" at least give me a partial until y'all can figure this out or something.
It's one thing when a person is healthy to have to deal with borderline incompetence but when you're vulnerable, to feel no ones looking out for you, just hurts. I'm so sorry Maggie.
I could type a novel about some of my experiences with my broken back and taking care of mother who just moved in with us from a different state. Right now the most important thing is for you to feel better and get a better dr. I am sure there are so many others who understand your frustrations. Hugs!
My heart breaks for you watching this, Maggie. I wish I could scoop you up in a giant hug. I too am a spoonie; I have chronic migraines, IBS, depression/anxiety, and a new diagnosis we're still trying to figure out lol. Having chronic illness is exhausting- symptoms, managing dr appts, meds, etc and manage regular life stuff/stress on top of it. It's awful when drs make things harder for you instead of easier. Praying you find a good new GI dr who treats you with the respect you deserve and that you would feel better soon. Thanks for sharing yourself and educating others. You have a beautiful heart and you're an inspiration to others struggling not to give up. It gets better!
Geeeeeeeeeez. This sounds like the disaster my aunt goes through CONSTANTLY when trying to get her insulin and other diabetes meds refilled. Absolutely infuriating!
Dear Maggie, I am so sorry this happened to you. Don't apologize for your feelings, you deserve so much better. I was diagnosed with Ulcerative colitis several years ago and I totally relate to what you are saying... It's not that easy to go and have a colonoscopy and it's not always the answer to everything....
I’m glad we could be your friend and be there to listen to you!. Being stressed is hard, being stressed and sick is harder, being stressed, sick and dealing with people who are not caring is impossible to cope with. I feel honoured you felt we were your your community enough to vent to us. All I can do is send you HUGE VIRTUAL HUGS 🤗💜🌸
I had a lab tech complain because she didn’t want to stop what she was doing to draw my blood. Recently my last urologist was taking about me not so nicely to a nurse outside the room I was in. Not too long after that she let the practice, I was going to let he go anyway. Saves me from doing it. New one was great!! So far..
Oh sweetheart, I'm so sorry you are going thru this. I'm going to be praying for you that God will give you peace and rest. So glad you vented. We are on your side and will listen whenever you need us. Hugs and more hugs. You are special and precious!
Maggie you are absolutely not being picky. Healthcare professionals i find are either really great or really bad. I am on 3 waitlists for different drs and one i have been on for over 1.5 years and it's kind of a very important thing bc I currently dont have a dr taking care of this and that makes me uneasy. It's frustrating when you are essentially shitting your pants and no one gives a damn. For you shitting your pants is a bigger deal and should be taken more seriously. I have noticed the pharmacy (i'm in canada) has not been very diligent either. I totally hear you and I get being screwed when you don't get specific meds. The amount of work patients are supposed to do these days is ridiculous. I'm sorry you had to deal with this.
I absolutely know where you coming from. You are not over reacting. This is how we are treated when our doctors retire. It's worse when they move their office is moved and they don't notify you.
My dentist did that. Just up and gone. There one day when I drove past, gone the next time I drove past. No call to notify me that he was moving, no text with their new number. Nothing. They straight up ghosted me 😪
Sorry for the rough time you are having, but glad you are talking about it. Healthcare is frustrating, painful, humiliating and expensive. Recommend that you try to find better providers, while dealing with the ones you have. Healthcare is a service business. Those aspiring to go into healthcare careers should be thoroughly screened for attitude and motivation. Technical proficiency can be learned, but attitude and motivation cannot. Over the years I have found there are always some people I like and some I don’t. I try to only deal with with the former and avoid the latter.
Older lady here. I know exactly what you’re going through. Had a kidney removed 4 years ago. Fast forward 2 years, I’m feeling great. But....no, my PTH is too high. (Been same number for 10 years). Suddenly it’s a major issue. Have a parathyroidectomy. You need it. Must have it. You’ll feel even better! They told me. Ok, finally a year later, ok, in and out. What happens?? Number goes up. Triple normal. Felt like 💩 for a year. Unbelievable. I asked why number didn’t come down. Answer: it happens sometimes. Would have been nice had someone TOLD ME! Can’t make an informed decision without all the info. I asked if they’d take out another 1 (they only took 1). They said NO, LEARN TO DEAL WITH IT! Two years later feeling slightly better, but still not right. Holy cow! I won’t even tell you tales about the 15 years my son battled (and lost) neurofibromatosis. Feel better.
I so hear you Maggie! I was crying for you as I know how this feels-it's overwhelming and maddening!! I don't know how you got thru this without crying-way to go. You need to find a kind, caring IBD specialist-keep trying until you get the right one!
Maggie, I’m so very sorry you went through this…sad thing is, I think most of us chronic illness patients have and probably most patients in general, and OT HAS TO STOP!! We are not just a number or an appointment, Its OUR Very LIVES andOUR FAMILIES AND/SIGNIFICANT OTHERS LIVES TOO.. The thing is, it’s not their lives or them fighting, suffering, and living with the pain and symptoms we do on a daily basis, every single second of every single day and night for us! It has to stop!!! I know we all in this chronic illness community feel the same when we say we wouldn’t wish this on ANYONE!! Again, I’m so very sorry! I just got my urostomy and my diseased bladder removed in Jan 2023. I was born with my bladder on the outside back in 1980, and I also have several chronic illnesses as a result. I’m so thankful I found you and your channel back before my surgery when I was searching for information and comfort in preparing for this big change. You have helped me so much and I’m forever grateful, and I hope that I too, can someday make videos and posts to help others like you and I. I’m praying for you and sending you love and happy thoughts!!
YOU’RE NOT A BRAT!! ✨YOU’RE NOT BEING PICKY!! ✨You’re TIRED of being SICK and of being treated like a nuisance from people who can’t do their job properly and you’re BRAVE to talk about it , because you’re not alone and the more voices speak up, the more likely these clowns’ time will be UP! I’m enraged on your behalf ❤️ this s**t’s traumatic
Unlike you I do complain to the higher ups about bad experiences with staff and doctors. Of course at 70 who cares if they don't like me. I think the nurses are concerned about NY review. Right now I have very nice, concerned people. Please take care of yourself, we Crohns patients need you and love you.
I know how YOU FEEL………I get so DAM SICK with my MEDS and the PHARMACY and I have a SPINE Disease and I am on some strong MEDS I used to have to go to my DOCTORS OFFICE every Month for a script then go and get filled now I call when it time and now my DOCTOR send in the script….At least when I had my script I knew it was getting filled now I do not and what’s so hard is the PHARMACY doesn’t answer the phone so I have to go in to see if it was called in…….GIRL I know your pain it’s like it’s getting HARDER……..But we do not get a choice WE NEED OUR MEDS…….
Someone said it down below (and I'm not even half-way thru this video before I needed to say something), but: no, you're NOT over-reacting. Not at all. Health care is a team effort. Team. You. The provider. The provider's staff. If the app doesn't work, and you didn't get a message, then that is on them. Not you. Like you said: PHONE CALL. Hand that provider the reality, Maggie, and TELL THEM where they can put the 'tude that you do not deserve in the middle of all this. Yes. You might need labs, but... there is a big, gigantiic even, but to this and it's a medication that you're on chronically. (NOT being a brat. No.) And as a phlebotomist... what? Really? If they're causing pain that sticks with you after like that, they're doing it wrong.
Oh Maggie.....i feel for you so much. You have EVERY RIGHT to vent & be upset by this so don't apologise at all. When you're chronically ill..you just want somebody to understand. You want your Doctor(s) to understand, be supportive and take the time to listen, especially when you take a bad turn. I have had a few fuck ups with my Pharmacy here in the U.K. and it's like they don't realise...that if i don't get my medication, i will be ILL....i will SUFFER..but yano..it's no biggie..i'll just have to wait (Even though they fucked up) And if the medical staff want to complain about doing your bloods while also blaming YOU for your own discomfort, then they shouldn't be in that job - end of. So sorry you've had these shitty experiences & i sympathise with you so much. Sending love and virtual hugs ♥️
I dealt with a similar situation only last week. Mine wasn't as complicated as yours with your specialist retiring but, I forgot to tell my chemist to order another Humira script because I had a Humira box still in my fridge not realising it was empty 😨😰. Naturally I tollay freaked out. My chemist is amazing. They had it for me the next day. My chemist also allows me to 'owe' them scripts. My dad who's a veterinary so has some human medical knowledge said Humira stays in your system for a few days. That relieved my anxiety so much. I swore to myself, I would never forget it ever again.
OH MY STARS !!!…oh Maggie I hate you are having to go through all of this…but I do understand & you have every right to feel the way you do!!!…I have an ileostomy & I totally get it!!!…you as the patient should get the best care ever!!!…sometimes the doctors & nurses are only there for the paycheck & don’t really care about the need of the patients!!!…I hope you feel better soon!!!…you are a BEAUTIFUL & WONDERFUL lady!!!…
Almost four weeks post op and ended up with Hartmans procedure. 70 yr old female. My back story. I am told by my GP May 2020 I had gastritis. So suffered one week called on day I knew she was off and called another Doctor. He flat out said sounds like diverticulitis go to ER get a cat scan. Yep Diverticulitis. Then my GP says if the antibiotics don’t work protocol is IV antibiotics in hospital. Well it didn’t get better and I was given another week of antibiotics. All the time I keep telling everyone that I just feel sick. Then I had 9 UTI’s in a row. Then another diverticulitis. I was on antibiotics almost the entire year. Then the abdominal pain beyond description. Into ER again and I am taken by ambulance to a neighboring hospital 30 miles away. I was put in bed for the night on IV antibiotics and the next day my doc comes charging in saying your going to surgery. I awoke with a colostomy bag and an innie stoma cuz I am fat. They could not stretch the blood supply the extra 4 inches. My main issue now is every bag I use the stool goes under the wafer no matter how we try to stick it my skin is raw hamburger but with duodenum is better. I talked with my psychiatrist and YAH I got a new doctor. My new doctor is thorough and thoughtful and warned me about the ups and downs. He is awesome. ……So I have decided I will have a pity party for myself once a month for as long as needed. YOU YOUNG LADY ARE AMAZING AND YOU GO AHEAD AND SHARE ALL YOU WANT AND NEED TOO. NOT YELLING TRYING TO MAKE A POINT. I cannot imagine how tough for younger people this all must be. At my age it will be much easier. PS I don’t feel sick. My new doc n me think I had a micro leak for the last year. Not feeling sick is awesome. You go girl. God bless you and you are in my prayers.
I know I have trouble getting through things with that "mychart" app. I still haven't seen the results of my last visit a couple weeks ago. TOO MANY IRONS IN THE FIRE. all this internet stuff has its benefits but causes people who aren't all over it all the time to pull their hair out. TOO MUCH BULLS#$T. Your situation is much more complicated than mine (I literally had a stent put in this morning, after having a 4cabg last August, and I found you when I had an emergency colostomy 2 years ago. Thanks again Maggie, and just know I feel for you. I wish I had an answer for you but if nothing else, I will pray for you. It's okay to let it out, sometimes it can be cathartic. 😊
Hunny it's all the buildup of stress and you don't feel good. Yes we know the dr office gals can make life worse and the vampires...lol...it's a luck of the draw, you get a good one or a bad one. Haven't rough wk too. Sick of being a professional patient...my supplies came in but only bags, no flanges...UGHHHHH. McKesson sucks, I have never gotten a correct order or it's late or doesn't come at all. Have to use them can't switch. I'm bummed out too. So I feel ya. The bs we gotta deal with. hope you guys have a better week...Michelle from Michigan. Crohn's..12 surgeries..major complications..fractured back too..TPN for life..short bowel..can't eat much but gained 30 lbs from steroids and my stoma is changing cuz of the wt gain. God Bless you both!!!
Honestly, I think you got really lucky with your first GI. I’ve seen a lot of specialists since being diagnosed with stage iv colon cancer three years ago (especially after moving states a year ago). By and large, my doctors have fallen between your old GI and your new GI. However, I have found that as time passes and a doctor gets to know me and my issues, they get better about asking how my specific problems are going. However, even with my best doctors, I’ve had to be proactive in telling them how things are going. One of the docs I wasn’t impressed with turned right around once I was completely honest about my issues. Maybe the new guy really sucks, maybe he doesn’t. But you’ll never know if you don’t answer his first question about how you’re doing. I hope for your sake he gets better, because finding new doctors sucks major.
Yes...The majority of what Maggie described happened was unacceptable, but you also do have certain responsibilities as a patient to be honest when they ask questions and get tests that are ordered. As you said, if she would have said that this, this and this is going on, it might have opened the conversation for discussion. As far as the pharmacy and bloodwork.. I have a feeling I know which mail order pharmacy she’s talking about, because I’ve dealt it. Lab Corp..ever since(and no this is not an exaggeration) they lost the jug of my urine that I brought in for a 24hr urine study, I refuse to go back there.
DO NOT APOLOGIZE....you've been through so much and so many of us have experienced the humiliation, ignorance and dismissal of health care personnel when we're in need of help and in pain. I do hope you feel better and that you can find a way around some of those morons.... Keep doing what you're doing on all fronts. You're helping more people than you know with your intelligence, compassion and resolve. And, please....VENT AWAY!
Oh Maggie, I'm so sorry this happened to you! This lack of care on the part of medical professionals causes medical PTSD! It's awful, and has happened to my daughter as well. This might help you going forward (not with awful docs and nurses, but just for your gut etc.) Get Julie Daniluk's book, "Hot Detox". She is a Canadian nutritionist who saved herself from near death from ulcerative colitis. Also, as we all know stress makes gut problems worse. Please take a step back from work, and get better. You are in inspiration to so many people with chronic illnesses! They need you to stay strong-you give them hope. Sending you all the healing vibes I can muster. You deserve better.
I just want to say - how weird the timing is I came across this video. I've been struggling with some GI issues for a while now that I haven't addressed and am already on Humira for psoriasis. So strange as I am now behind on mine also because my refills ran out and I STILL HAVEN'T heard back after 2 calls and am now VERY behind on my medication - Feel your pain girl. And I AM A healthcare employee myself. Definitely frustrating.
You have every right to be upset over crappy treatment....I told my old Dr about something yrs ago, he wouldn't even look at it....basically said I was overweight n my thighs rub together....fast forward to pandemic 2020....new Dr which I can't see cuz pandemic...I have been diagnosed with another autoimmune disease thatsvout of control cuz of a complacent Dr.....so Yes complain...get it all out there...and look after you #1 ❤
My heart goes out to you Maggie. I’m 60 and I’ve Health issues pretty much all of my life. I can’t relate to your health experiences but I can relate to your medical frustrations. It’s been good for me to watch your videos…..my spirits can get pretty low and tired of it all. I respect that you are a fighter! I get tired of people saying “to accept my new normal” when what I’m experiencing is NOT normal. Fight fight fight….and feel comforted knowing that you have friends unseen who really respect you and wish we could give you a great big hug! Your life and personal experiences are touching many lives. Thank You! God Bless You!❤️
I totally understand I stopped vedolizumab in January because it wasn't working. And I have been left to it. I emailed my Ibd nurse's 2 weeks ago telling them I've had blood and diaharria but still nothing. Love you ❤️❤️
Thank God we have the husband's we have. My husband & I are Legally Seperated so I could get the Medical help I need❕we've been married almost 40 yrs. He comes & cooks for me every day, Takes me to all my Drs appt's & go in w/ me if I want him to❕ It never hurts to have an extra set of ears✨🗣👂🏻👀👂🏻✨
