Being Your Own Health Advocate

It’s Not as Easy-Peasy as it Seems

As long as I’ve been sick, and as long as I’ve been blogging, I’ve either been reading about or hearing about being your own health advocate. While being a self-advocate is something that seems easy, and is something that we have been doing since we begin seeing the doctor on our own, it’s not always easy. I’ve wondered why that is and how we can improve on that, to become better self-advocates, because there may come a time when ourselves is all we got.

 

Difficulty Being Assertive with Your Doctor?

Spear_3606

 

You’re not alone. Many people find that being assertive with their doctor can be a difficult undertaking. We can find ourselves at our most vulnerable when we are with our doctor, both physically and emotionally, but hoping that with all their education and experience, that they have the answer we are so desperate to have. However, when their diagnosis or treatment plan goes against what we may have in mind, we have a great deal of difficulty telling out doctor this. Why?

 

Many of us feel that if we question a doctor, we are somehow questioning their expertise and authority. We don’t see ourselves as equals when sitting with our doctor, even though we are both adults and equal as human beings. This seems to make us feel, in a sense, like a child and a “questioning of expertise may lead to retribution in the form of a lower quality treatment from their doctor somewhere down the road.” We’ve all heard doctors as possessing God complexes. There’s a reason for that and challenging their authority is one of them. But there are ways you can have a relationship with your doctor as an effective communicator- self-advocate. [1] Wagner, 2019

 

 

Non-Negotiable with Doctor

susie signs a contrat

 

Trust: Once you have a doctor, establish trust. Without this, you can’t proceed. Good doctors listen, don’t make you feel rushed and have patience. But doctors can have a bad day and staff can be off, so remember to have patience too.

 

Respect: Everyone starts with respect in my book. You don’t have to earn anything with me. But once you lose it, it’s gone. If a doctor disregards a legitimate complaint; if they tell you it’s nothing and to just lose weight-game over. Find a second opinion and start again.

 

Serious surgery/treatment: Any experimental/trials, surgeries, cancer treatments or whatever, get a 2nd or 3rd opinion if necessary. Do your research and see what trials they did for it; see what other patients said about it, and how they are feeling now. It’s very important to do your homework. If you don’t like what is said, find another doctor.

 

 

Tips for a Good Self-Advocate:

advocate

Communicate: It’s not just about talking. It’s about being effective. Any advocate out there will stress the importance of clarity with your doctor, and communicating your concerns and desires over the progress of your treatment while maintaining a professional relationship is essential. It’s important to be able to discuss treatment with a doctor without feeling like you’re going to hurt an ego.

 

Assertive: “Being pushy without being annoying.” You won’t find that definition on the dictionary, but I like it. In order to be an advocate for yourself, you need to learn how to do this for yourself, because there are going to be many instances you find yourself needing to use it. Whether it’s calling up the insurance company and finding out why a bill hasn’t been paid yet- and as my grandma once told me, you catch more flies with honey than vinegar, it pays to be persistent but not a bitch on the phone. They’re only doing their job and they don’t know any more than you know them.

 

Passionate: Oh, energy and enthusiasm! Chronic illness and chronic pain is a long struggle. You have to bring your pom-poms with you for you, to fight this. Ain’t no one gonna fight harder than you. Remember this when you feel like crap when you’re tired and you hurt and remember when you just don’t want to do it. You gotta look out for number one.

 

Knowledgeable: Research the Issue. It’s easy to Google something but it’s better to research. Google doesn’t mean it’s true, but if you research it and you find five or ten articles that say it’s true, you have a far better chance of the information being true. I’m a big proponent of research and being armed with research when going to the doctor can only strengthen your case when you bring your ideas for certain treatment before them. You may not have a degree but you have the right to consider what treatments you want to try.

 

 

 

[1] Wagner, 2019

Advertisements

The Trouble with Spoonies and Fun

Prepping for a Concert and the Flare to follow

Every Spoonie out there understands the consequences of doing too much. I think most of us try to balance work and home and any fun we do so it won’t stress out our body and we won’t have a flare. But sometimes flares are unavoidable. There are things in life we have to do, even fun things that we want to do and we weigh the options and go for it despite the likelihood of a flare. For instance, a recent early Anniversary gift from my hubby that I have known about for months: Evanescence and Lindsey Stirling tickets. The concert was this past Saturday and I’m still recovering. It was well worth it the seats were amazing and I enjoyed every minute of it, but the venue was difficult for me though it is a beautiful place. It is outdoors, the grounds are sprawling and unfortunately, I found their accessibility lacking. Handicap parking was first-come-first-serve and even our very early arrival, several hours before the first set, we still found nothing. The venue is out-doors and from the drop-off point to the actual pavilion where the concert takes place was quite a walk for me with my cane. It is also August, in Texas, which means it feels like you are just a few inches from the surface of the sun and I fall into a category of people whose body is not agreeable to the warm temperatures. I am not sure if I am in the minority, especially when you are talking about the heat here in Texas, which I think could offend even the most tropical of people but, I seem to fare better in cooler weather. I think I must have sweat about a gallon, no joke, even after 8pm when it was dark, it was still around 85 ̊. Even after living here almost 23 years, the heat just takes your breath away. You don’t get used to it, you just tolerate it and are grateful that most of the time you are in a/c. After the concert there was some difficulty in picking me up because I had wandered too far in migrating with the throngs of people leaving and I ended up having to walk around quite a bit in meeting up with the hubby, who ended up having to park in BFE. This post is a combination of two things that occurred to me afterwards: Things you can do to ease a flare the day after and, how you can prepare for an event (like a concert) better than I did.  I don’t go out much, in truth, so I suppose that is why I’m pretty shoddy at preparing. But where I fail, you, my friend will reap the benefit of hindsight!

5 Ways to Prep Before a Concert

1.)   The Venue: Do your homework! You can’t determine where a concert will be held but you can recon the venue so when you show up it’s not all a big -inconvenient- surprise.

2.)   Parking: Make sure you know where the disability parking is if you are able to use it. If you don’t have a placard or plates, try to find the most convenient place to park that day.

3.)   Call the venue: This one is the most challenging for me. I don’t like feeling like some prima-donna who needs special treatment. Don’t be like me. I mean it. I may have suffered quite needlessly all because of my own stubbornness something that may have had a solution had I called. Having a disability and needing special accommodations doesn’t make you spoiled. You are just wanting the same, reasonable access as everyone else. So, call the venue and see if they offer any services that can assist you in getting around better.

4.)   Clothing: Make sure you are comfortable for the event and season of the event, if it is outdoors. I must have changed four times before I settled on something that I felt would keep me the coolest and I am grateful I did. The black leggings that was my first choice, while comfy, would have been the death of me in the heat department. You want to enjoy yourself so don’t sacrifice comfort for style.

5.)   Ear Protection: This is huge. Typically, we always bring ear protection with us but this time we forgot and by the end of it I was not alone in my ear pain. Not to mention it triggering a migraine that luckily, I had brought meds for just in case. We use the squishy ones for the shooting range and they do not impair your hearing of the concert, just your ears. Even two days later, I am still experiencing ear pain.

I’m sure there are more ways to prep before a concert that I haven’t addressed. Please, feel free to share them with me.

5 Ways to Self-Care the Day After

1.)   Rest: This is the biggest and most important thing you can do for yourself. There is absolutely no shame in it and your body will recover faster if you take the time out for it instead of just trying to jump back into life.

2.)   Crock-Pot-Rescue: When you plan your meals for that week of, make sure to include a crock-pot dinner, or something equally easy, for the day after the concert. This is part of self-care and resting.

3.)   Netflix and Cuddle: Or Hulu, or Amazon or Crunchy Roll! It doesn’t matter, just grab your favorite cuddle bug, sprawl out and indulge in your favorite movie snack and relax. It’s amazing what cuddling can do in combination with relaxation.

4.)   Bath or shower: Grab your favorite essential oil or bubble bath and sink in. If sinking in is not an option you can still drop some essential oils into the shower and just luxuriate in the hot water and soothe muscles and psyche while inhaling the fragrant scent.

5.)   Pamper yourself: Pick that one favorite thing you never indulge in and do it. It doesn’t mean you have to go out anywhere either. Love getting your nails done? Grab your favorite color and set up a comfy spot and paint your nails. Never have time to read? Here’s your chance! Make a nest on your bed and curl up with that book you’ve been meaning to get to. Sky is the limit and remember, you don’t need to wait for a flare to do these things either. Self-care can be any day of the week.

Thanks for your continued support:

https://lovekarmafood.com/blog/
Please donate ❤
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=4MYYJHXFMTGZN