The 101 class they do not teach.

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At thirty-nine years old, I was taught life skills in school. This might have been part of being in special needs classes throughout grade school.

I learned typing, how to balance a checkbook, and how to do basic stuff to a car in driver's ed.

The one class that I think everyone needs to have is how to navigate all this crap when your health goes wrong. What and who to designate as a medical proxy in case stuff gets bad? What a living will is. How to sign up for medical insurance and what plans are worthwhile.

All this stuff I wish I knew going into this journey with my health.
So many times I am lost because it is not something that even my parents and grandparents have had to deal with.

I wish there was a what to do when your health takes a huge crap on you 101 class I could take to figure all this out.

 

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I completely agree! Nobody taught me how to balance a checkbook in school, but fortunately I had good parents who did. But they didn’t teach me about the dangers of credit card overuse. I was in pretty big trouble with credit cards by the time I was just 19.

Also, nobody ever told me that if you want to have children as a woman, you better do it by age 35, because the quantity and quality of horrific birth defects increases exponentially after that age. Pregnancy becomes very dangerous to both the mother and the child after age 35. Guess how old I was when somebody finally explained that to me? I was 33 and single; way too late, especially given that I’ve been contending with fertility problems my whole life thanks to Poly Cystic Ovarian Disease (PCOD)!

Also, nobody ever told me that the best thing you could possibly do for your older self is to own property, even if you don’t live in it. Nobody explained the power of real estate to me. It didn’t help that I was living in big cities like Chicago, San Francisco, and Los Angeles, where nobody else was owning property, either. All of my friends of all ages always rented! It’s very common there to rent for the rest of your life! But that’s a very foolish retirement plan! I don’t own property yet at age 47, so it’s pretty unlikely I ever will. My medical expenses get in the way of me ever being able to save enough money for a down payment for a permanent home, particularly as a single woman. I think that if there’s any money left after my parents die, it will probably be too late for me to buy a property and it won’t be enough money for me to buy a property. I think my mom‘s going to live for a long time, and that she and my father have conditions that will eat through all of their money, and that there will be no inheritance, anyway. I spent close to $300,000 on rent now in the past almost 30 years I’ve been renting. I plus own a nice condo for that amount of money, even in Los Angeles!

 

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I totally hear you on this. I'm a 58M and I've been dealing with health crap nearly my whole life. A birth defect caused me to get a plate in my head at 3 months old. Seems like it's been downhill ever since.

So many things have been gaslighted by the doctors over the years that I have forgotten the count. Doctors kept telling me that "you can't have that because that is for...people" Well doc, guess what I'm a skinny diabetic with bad sleep apnea and a guy who gets UTIs. I know that doesn't fit your image of what I should be but here it is. And yes, I have an underactive bladder so it's not as rare as you say. Most of my doctors have no idea what dysautonomia or POTS is but will passionately state that I can't have it. Just fired my urologist today.

I wish we could take a class to learn how to self advocate. I wish so called patient advocates actually did something for the patient. I wish that health insurance actually covered things that really matter and not so much extra that I will never use. Make a damn policy tailored to me and fix my broken body without having to jump through hoops.

And, even more important, let's have a class to really get into how our bodies work.

95% of all the progress I have made has been because of my own learning and research.

 

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I will give @snow a lot of credit for getting me to self-advocate for myself. I do not like drama or change in my normal day-to-day. That made and does make fighting for myself hard for me. Doctors and practitioners do not always document or take things at the level that they should with me. This week things are going to change or all hell is going to break loose.

@Justme

I agree with you on patient advocates. They do not follow up/much like my doctors when they should.

I miss having a case manager (It was part of my insurence during covid rules) She called me every week to make sure I was okay.


I want to go home for Christmas and tomorrow and Wednesday are deciding factors in that.

One big thing I do now is let doctors and practitioners know right up front that I am in a brief/diaper. I do not care anymore. More than once in the past few years with everything in my chart they did not know I was wearing anything for my incontinence issues.

Example: During my recent surgery. The nurse practitioner who was with me when I was waking up was like WTH when she read my chart and realized that they had taken my folly catheter out already.

She started leaving to get me a brief and I stopped her letting her know that I had mine in my bag.

She was like, wow. These are better than anything I have seen. I was like, yeah been a bed wetter for over 20 years and now I have tried a lot of products and found what works for me.

But that was a learning process. It is another thing that I wish back then there was someone to help with.

I know in some countries they have continence care nurses that help you find products but not here in the United States and that is sad and stupid to me.

 

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@ThatFLGuy I agree with you. Sorry you lost your former Case Manager; I didn’t know that.