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1099d
After decades of patient care, I have no doubt in my mind that the patient is my primary partner. A physician cannot achieve a good medical outcome for a patient without the patient being involved and active both in the diagnostic phase, in the decision-making phase and in the treatment phase. The second most important player is data. In medicine, data is not just another buzzword, it's a life-changer. Today, we understand that it is imperative to make medical data accessible to both the doctor and the patient. Patients who have access to data are more engaged, more knowledgeable, and achieve better treatment outcomes. The doctor-patient-wisdom of the crowd triangle is the key to success. I encourage you to learn as much as possible about yourself and your treatment plan through your medical records and take control of your life - and remember, I am here for any questions you may have along the way.
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Cortisone
Prednisone
Hypotension
Fenbendazole
Diabetes Type 2 (T2D)
Low Mood
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447d
@Art_therapy my partner has been dealing with a UTI for a very long time. No antibiotics have helped. Starting to get worried. On top of all the other things women have to deal with, now this?
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448d
💕 xxx
456d
Sure Data is important, but needs to be a large data set to gain better outcomes. Sorry I’ve just dived right in after signing up moments ago 😂👍🏼😊
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460d
This is so important! If you don’t ask questions or if you don’t feel comfortable with your care team, you should absolutely find a care team that works for you! I’ve “fired” doctors that I didn’t feel were listening to me or cared about my needs as a person. If you don’t “click” with a doctor or a clinic, it’s well within your rights as a patient to find other providers that will work for and with you.
I have told many drs I know my body better than anyone. I've lived with it 53 years. While I acknowledge the value of medical training, it is based on averages of many. I tell my drs it's my responsibility to know my body and it's unique statistics. I have kept journals of what I put in and on my body so I know what reacts. I read labels on everything. It's my responsibility to know how my body reacts. It's my drs responsibility to advise based on their knowledge. I treat my body like a machine. I own the owners manual and it's my responsibility to know how this machine runs.
461d
Hi
❤️
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468d
It took me going through my records to find that I had a UTI in the hospital that i wasnt treated for or told about and three months later it was causing me to have a fever and other nasty symptoms as my chronic illness was flaring (the uti was mostly asymptomatic). Please look at your test results, its so important
@Art_therapy 😥
470d
my dietitian says about 25% of your calories if your using healthy carbs. But it changes by age, weight height and goals. https://www.calculator.net/carbohydrate-calculator.html?ctype=standard&cage=25&csex=m&cheightfeet=5&cheightinch=10&cpound=160&cheightmeter=180&ckg=60&cactivity=1.375&cmop=0&cformula=m&cfatpct=20&printit=0 this might help. It doesn't show 25% it shows 50% though.
469d
@LadyBrownharth Thanks so much for information
I find that I have to keep learning about the different disorders I've got as due to specialist's not giving me any information explaining or ask if I have questions.
474d
❤️ thank you
476d
I wish this was how all doctors approached patient care!
👍
477d
Absolutely
I have had both, cortisone and synvisc. The 2nd one lasts 6 months and I am bone on bone!
478d
I need to know about the cortisone shots are they good for arthritis are can it make the situation worse in your knees?
475d
@Kingsdaughter it depends on how you react to it. It worked great for me for about 5 days. But I had fantastic success when I had them in my back.
481d
496d
I wish I had a cardiologist who listened to me instead they completely disregard anything I say which is so frustrating. 😔. Don't feel confident or comfortable telling them anything they just act like how I'm feeling dosent matter which I don't agree with. I'm sure I'm not the only one who gets treated like this atleast I hope I'm not 😳😐
@yumzy199725 I have had doctors like that and one of my doctor informed me not to keep doctors like that because I am just a number to them. Since then I don't keep doctors who can't team up with me for my good
497d
I was reading some posts and I noticed that some people are or have been on a steroid regimen. I am too. But only 5mg a day. But back a few years ago I had massive amounts of Prednisone because I was sick most of the winter. What happened was that it knocked out my immune system. Now I have to infuse anti-bodies weekly. I don't mind and I've certainly gotten used to it. It's not difficult to do yourself at home as I do. But if you have had high doses of steroids I would ask your doctor to check your anti-bodies and make sure that your levels are up there. It saved my life. I rarely get sick anymore. I had covid December of 2019, before it was in the news, and I struggled in the hospital for a couple of days but I got over it and am healthy today. I did not and will not take the covid vaccine though. Message me if you would like to learn more about the infusions.
I have only ever had one dr not screw me over or try to kill me, so how exactly am I half of a partnership to these ppl? (These were supposed to be good drs, the one at Tufts was the most recent to almost kill me so…)
498d
510d
This is so true 🙌❤️
514d
❤️ ❤️ ❤️ Great post! 👍
519d
This is right up our alley for all of us who have been through so many Dr's and treatments and medicines. Hung with the ones who are willing to help and go out of their way to understand and what's best for illness. It's just such a difficult illness since it seems to affect people differently
I started a new medication a couple months ago and I noticed that my blood pressure has been below normal. I don't know if it's the medication or stress. Will respridone cause low blood pressure
I wish more doctors felt this way. I've had to fight to be heard and I know someone that was told she was the patient to figure out what works best for her or what she thinks works best for her. It's very frustrating that not all doctors are like you.
528d
I wish more doctors felt this way! I've had to fight to get any info. Like imaging that I can actually view. It's so frustrating! 💕thank you for supporting us!
Are you still in this app?? I have a question for you 🙂
@Tree20 Me?
I've found learning how to speak my doctor's language and developing a trusting foundational relationship made all the difference in working with my medical team for the best possible outcomes.
@jmr2191 This is something that I am slowly learning
529d
We will all live long🙏
@Burleson 💕
533d
Absolutely! I have been as much as an advocate for myself and those around me as I can be.
471d
@sorenachy Good going. 🙏🏻 Don’t quit. You’re definitely needed.
@sorenachy I try to do the same but to advocate for myself I fall short. Plus medically the system is confusing to me
If you are still learning about one conditions and are always tired what should one do? Years ago doctors used to educate but now they don't. Plus what if doctors ignore one medicine list and keep adding and almost caused a drug overdose because one trust the doctors?
@Overcomer I actually caught my doctor trying to prescribe me a medication that would interact with asthma, and she didn't prescribe it but something else that wouldn't. Now I make sure I ask if this new med will affect anything I'm on or aggravate one of my conditions.
@sorenachy Also how did you know that your doctor was? Did you Google etc? Please educate
@sorenachy That is scary when we go to a doctor who calm by oath to care about patients that walk in
❤️we all will live long
534d
Thanks doc! You have your medical expertise but I have lived in this body for 68 and I am the expert on this body. It truly does need to be a partnership!
535d
Can alcohol liver disease cause mild body itch ... I thought itching occurs only in cholestasis
@Emilio22 It also happens if you phosphorus is too high.
552d
My MIGS has said that while she learns a lot from research, she learns a lot from her patients as well and she loves when they come in with ideas and questions. Makes her feel like they’re engaged in their healthcare which makes her happy
I enjoy the study of the Bible. However when I get stuff like thi, it’s really exciting.
635d
My feelings exactly. However I've learned so much I never knew b4. Hoping to have found my hero in Oct. Seeing an autonomic disorder specialist. Hope to report some good news after!
641d
I’ve read where Fenbendazole can cure cancer I’m having trouble with my doctor wanting to put me on this fenbendazole I would like your opinion on this
674d
❤️ exactly!! I've been my own researcher for 6 years because I can't get one doctor interested nor excited to challenge themselves with my case. I've learned so much but hello I'm still not a doctor and I still need one.
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Thank you for this! Would you be able to post signs that you’ve found a good/understanding doctor/PCP? I feel I’ve been fooled a lot by doctors that seemed to have my best intentions but actually were only concerned about their own opinion or discretion 😥
516d
@ThickAndTired Some of them are getting money from BIG PHARMA as well and they’re more interested in the MONEY than proper treatment so be careful looking for a PCP.
517d
@ThickAndTired when you are looking for a new doctor, go to the front desk and tell them you are looking for a doctor that listens to their patients and explains things. And remember that if you don't like a doctor you don't have to stay with them (usually). If you feel your needs aren't being met you can also tell that doctor that you want them to document in your chart while you are sitting there why they won't discuss what you feel needs to be discussed, whether it be pain meds, a handicapped parking permit, etc.
518d
@ThickAndTired this is the reason why I struggle to trust anyone in the medical field.
👍❤️👍
687d
🤗
688d
🙌👍
Are you strong physically
693d
I also have to be careful with caffeine.
🙌 💯 agree
Do you know much bout EMDR treatment? Im kinda considering hypnotic but I don’t my insurance covers and I have no funds.
694d
So true Varda. People, READ YOUR LAB WORK. ASK FOR A COPY. FOR 10 years not ONE, of my medical team did anything about my high calcium score of 11.9. MY kidneys were failing, GFR of 48. So I did research on the computer and I found out I had HYPERPARATHYROIDISM. My symptoms were depression and fatigue and I didn't want to live. I developed hypercalcemia which caused my appendix to attach to another organ. The pain was bad. I got a surgeon who removed 3 parathyroid glands. Better now
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@needempathy Definitely.
@needempathy 💯 agree, I am very informative about my health. I was just telling my MD that he probably thought I was crazy just last month for having him check my A1C. But my body just hasn't been feeling right and sure enough it came back 6.0. he now believes everything I have to say and really listens to me. Although he is just my main doctor, I have 7 others.
695d
👍. Ok. My primary Dr had a huge problem getting the endocrinologist to the phone to talk about my case. The endro prescribed a new med which pushed my blood pressure to low. I'm talking both # below 100 for blood pressure, the bottom # below 60.
@Dee364 Yikes. Stay away from that and keep your blood pressure stable.
@Denotchka intend too! Ended up in ER last month due to low blood pressure.
Thank you! How would you recommend tracking test results? I have them online for the past few years however it doesn’t give a full picture as it’s missing previous years so I was hoping to pull it all together however not sure the best way to do this without manually loading it into excel…
One of the problems I see as a patient is if you have multiple conditions, with doctors being so specialized, it's really hard to have one (ie a PCP) who understands the whole you!
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707d
I decided I want stem cell treatment for my APKD and ESRD 5 but not after they forced me to get both catheter and a fistula which still need final approval and getting rid of the catheter. I'm wary of just doing surgery all the tim. It disrupts the electrical system of the body.
801d
🙏
😥
986d
What are the recommended amount of carbs one who is diabetic(type2)should eat per meal?
@Natalie originally I was told that the # of carbs should be 10% of the number of calories recommended for you personally. So if you are on a 1,500/day calorie intake, you can do 150 carbs (or grams) a day. But personally that's always been a little high for me.
994d
How do we see the newest treatments on our condition
1028d
🤗 🤗
1029d
💕
1097d
1098d
🙌 🙌 🙌 absolutely!
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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