Room For All

[ChemGal]

Oh man @ChemGal that's rough. Hugs to you.

The genetic disorder is at least good news compared to what was suggested last week.

 

[Northwind]

The genetic disorder is at least good news compared to what was suggested last week.

Well that's one way to look at it. I'm glad it's not as bad as it could be

 

[Mrs.Anteater]

Health concerns seem to be big in the room these days. I also have news of an upcoming surgery on Nov 5th. Got in on a cancellation, otherwise it would have been a year. They don’t keep you long in hospitals anymore, I am hoping its going to be two nights, so I am working on finding friends and family to stay with me 24/7 for the first week. After that I hope I feel relatively comfortable alone, and with a list of people to call for help. Will need help with lifting anything heavier than a plate of food for the first 6 weeks or it can mess up the surgery.
I am getting nervous about it, but I have a good gynaecologist, and our hospital is probably the cleanest you can imagine, because we have very dedicated staff that take pride in their jobs. Even the food has gotten better over the years. And I will be off for at least 6 weeks. ( my colleagues are somewhat panicking because of that right now).

 

[Northwind]

All the best for you @Mrs.Anteater. I'm glad you've got helpers and a plan. I hope all goes smoothly for you.

I heard from the radiology oncologist's assistant today. I have a an appointment with her and a CT/prep appointment at the end of November. Radiation will start in December if all goes as planned. Gulp.

 

[BetteTheRed]

Thinking of all of you with health challenges at present. Very few of us seem to head into our senior years without some sort of challenges. Mine is minor, fortunately, at present, but extraordinarily annoying. My atopic dermatitis/psoriasis crap gets worse and worse, and the itching is just awful. An army of creams and antihistamines accompanies me everywhere...

*Bette tidies the room, freshens the fire, puts out a plate of cranberry orange scones to go with the perpetual beverages.*

 

[Mendalla]

He'll, I am only in my early (okay, mid) fifties and I have diabetes, hypertension, fatty liver (which generally goes hand-in-hand with the other two). Also have skin problems but simple Aveeno seems to deal with most of that.

Good luck and good vibes to all those facing surgery or other medical stuff.

 

[ChemGal]

Health concerns seem to be big in the room these days. I also have news of an upcoming surgery on Nov 5th. Got in on a cancellation, otherwise it would have been a year. They don’t keep you long in hospitals anymore, I am hoping its going to be two nights, so I am working on finding friends and family to stay with me 24/7 for the first week. After that I hope I feel relatively comfortable alone, and with a list of people to call for help. Will need help with lifting anything heavier than a plate of food for the first 6 weeks or it can mess up the surgery.
I am getting nervous about it, but I have a good gynaecologist, and our hospital is probably the cleanest you can imagine, because we have very dedicated staff that take pride in their jobs. Even the food has gotten better over the years. And I will be off for at least 6 weeks. ( my colleagues are somewhat panicking because of that right now).

It doesn't feel like that much notice when trying to get everything arranged.
I hope that goes well for you and that you are able to stay fairly calm as it approaches.

 

[Mrs.Anteater]

It doesn't feel like that much notice when trying to get everything arranged.
I hope that goes well for you and that you are able to stay fairly calm as it approaches.

Its on a cancellation. I am fortunate that I can arrange work at short notice, I guess. I know I wasn’t at the top of the list but I must be the only one who can make it. Arranging people would be a challenge no matter when it happens. And its good that I don’t have to worry about snow shovelling in the first six weeks, there shouldn’t be too much.

 

[Mrs.Anteater]

He'll, I am only in my early (okay, mid) fifties and I have diabetes, hypertension, fatty liver (which generally goes hand-in-hand with the other two). Also have skin problems but simple Aveeno seems to deal with most of that.

Good luck and good vibes to all those facing surgery or other medical stuff.

Wouldn’t it be nice if Aveeno also works for diabetes and hypertension.

 

[Mrs.Anteater]

I had a very informative 2 hour appointment with a physio specialized in pelvic floor health today. Wealth of information and the right exercises to get the muscles strong that are causing the problem. Will have to start over somewhat after the OP, but getting on the right track.

 

[ChemGal]

The mentoring I do is to try to get the students to see what it's like to be a patient with a chronic illness.
It's a total of 5 'home' visits over the 2 years, one medical appointment plus the reception meet and great that I went to last night and the art exhibit at the end.
Last time we didn't do a single one of the home visits at my home, neither of the students drove and buses don't run often to my neighbourhood. They also had to find the time between classes, meetings, shadowing doctors, etc. We would meet at cafes instead.

Each visit has a theme, I don't get the questions they that are supposed to cover ahead of time (and I think that they aren't supposed to have a list of questions out, it's supposed to be more of a conversation where they get them all covered, might be more Q&A style at the beginning though, it's hard to think back that long ago in terms of the style of the visits!). It's also made clear that I have the right to refuse to discuss certain topics. They do request that those who join the program are will to discuss experiences though, because if the mentors clam up about everything not much mentoring is occurring.

I of course did make sure my patients were well trained in what HAE is and some of that came up indirectly with some of the topics too but I gave them some direct info - not specific to the program but just something important to me. They would tell me things like how med school was going too, you just get to talking about things.

For the medical visit there are not to be there in the mindset of students, they are to be thinking of themselves in the role of a support person. Similar to how I brought Chemguy to the appointment today.

The entire point of it is to get them thinking in terms of how things affect patients, it's not just about treating the medical problem, but to think of patients as individuals, and what types of things help not just medically, but reassurance, quality of life, etc. Since it's unethical to give them a chronic illness they do this program

 

[Mendalla]

Wouldn’t it be nice if Aveeno also works for diabetes and hypertension.

Would certainly cut down on the number of scrips I am on.

 

[ChemGal]

One of the articles that was asking for volunteers - Innovative program puts medical students in the patients shoes | Faculty of Medicine & Dentistry
And the criteria from that -
Volunteers must:

• have a diagnosis of a chronic illness that impacts their life in a significant or daily manner;
• be willing to be an engaged and positive participant in contributing to students' learning;
• be willing to share stories related to their experience of being a patient;
• have regular contact with the health care system throughout the year and be willing to share their experiences with navigating the system.

I did find the art exhibit interesting, some of the projects made it clear what the patients were dealing with but not all. Mental illnesses and autism seemed to be common. Diabetes wasn't as high as those two, but also seemed to be one of the ones that was mentioned in multiple pieces. It did sound like some of the mentors with the mental illnesses had though they were more open to discussing their experiences that what they really were - or the illness itself would change that. There was one child mentor who very obviously had some severe health stuff, she had multiple adults with her at the art reception.

 

[Luce NDs]

One of the articles that was asking for volunteers - Innovative program puts medical students in the patients shoes | Faculty of Medicine & Dentistry
And the criteria from that -
Volunteers must:

• have a diagnosis of a chronic illness that impacts their life in a significant or daily manner;
• be willing to be an engaged and positive participant in contributing to students' learning;
• be willing to share stories related to their experience of being a patient;
• have regular contact with the health care system throughout the year and be willing to share their experiences with navigating the system.

I did find the art exhibit interesting, some of the projects made it clear what the patients were dealing with but not all. Mental illnesses and autism seemed to be common. Diabetes wasn't as high as those two, but also seemed to be one of the ones that was mentioned in multiple pieces. It did sound like some of the mentors with the mental illnesses had though they were more open to discussing their experiences that what they really were - or the illness itself would change that. There was one child mentor who very obviously had some severe health stuff, she had multiple adults with her at the art reception.

Then there is the experience of going for medical help from a doctor that says you have not pain ... it is all in your head!

Partly right given the process of the brain and a medium supporting a ghost-like cloud of electromagnetic nature! Surely it may appear as a buzz ...

 

[Carolla]

I had a very informative 2 hour appointment with a physio specialized in pelvic floor health today. Wealth of information and the right exercises to get the muscles strong that are causing the problem. Will have to start over somewhat after the OP, but getting on the right track.

Those specialized physiotherapists are true gems. So glad there is one in your area.

 

[Carolla]

Seriously WTF is up with my luck?

I guess you're just a rare exotic gem ChemGal Making the medical profession stretch their knowledge and imagination seems to be your calling And you're doing a good job of it!

 

[ChemGal]

I've been doing a fair bit of reading. I don't think I have an actual disorder anymore, but rather long term basically poisoning - same accumulation of the genetic disorder I'm being tested before, but 2 tests results don't make sense as I researched, not just one.
So better news although depends on the long term damage done and there's still a bit of reason as to why although one of my meds may have factored in. Will be testing water - including sump pump water that was use to water the vegetable garden.
Really need to discuss this with doctors, but makes sense with the testing done so far and there isn't much more testing that I can see that could be done besides results I'm currently waiting on & one more blood test to confirm what I suspect.
Frustrating but I feel like there's a bit of a more final answer compared to when I left my last appointment.
Weird I know, will explain more as things get more confirmed with medical professionals.
A bit annoyed as I did seek help from pharmacists and even poison control (even if it was the genetic disorder poison control helps with meds too). They knew nothing of it, couldn't pull up anything but I found multiple case studies.
No idea how much this is connected to my symptoms, but is connected to the abnormal lab results. I imaged at least some of the fatigue is related.

 

[Northwind]

@ChemGal maybe it would help to see a good naturopath or someone who looks at environmental related illnesses. Good on you for doing the research. That's so important for all of us.

Here's to solutions for you.

 

[ChemGal]

@ChemGal maybe it would help to see a good naturopath or someone who looks at environmental related illnesses. Good on you for doing the research. That's so important for all of us.

Here's to solutions for you.

I'm hoping I can get into see a toxicologist.
There are meds for the genetic disorder which would also help with this, plus usually a diet is followed for a while. Figuring out what combo would be necessary is probably the trick. Stopping the medication that's contributing will probably be one of the factors.
I also want to get a req form from my doctor to get Chemguy's levels tested. I think that will help as it will give an idea of how much of this is just my body not acting appropriately (including the med) vs. environment amounts and just what we are eating in general. He will be busy with work and out of town this week so fingers crossed at my appointment I can just get the req form for him.

 

[Northwind]

That's a good idea to get Chemguy's levels too. Hopefully all this work will pay off.