Shocking Our Routine When Others Visit

Rhythm is instilled in us. It allows us to have an understanding of what works for us to survive within this life we live. It is a way to feel immortal in our very mortal bodies. In a rhythm we are able to figure out a way that allows us to move in and out of our days within life, allowing for us to be able to set up what we know can and can’t be done with our chronic illness. It makes us feel a little bit more human for a moment to feel that there is some kind of continuous normality of grounding ourselves, yet we feel invincible when we have a rhythm that works. Those rhythms change and can look different within our day to day normal lives, but there is a heartbeat of life that keeps us feeling like we have a sense of control and a sense of understanding what is happening from step to step. It is our new normal, it is a rhythm we are constantly shifting and changing to make it more normal feeling. It may be a work in progress, but it is ours.

 

Each personal rhythm is created by how we walk through life in little moments. When do we get up, when we shower, how we shower, how do we move within environments, how we interact with weather or temperatures, what we eat, how we eat, how we choose to interact with others, and so many other movements. Your rhythm is essentially the safety zone of your routine. With chronic illness, these little movements and moments become under a magnifying glass, because we are taught in those moments are limits in such great detail. Our rhythms are created through our illness based on what can and can’t be done. As we walk with chronic illness we understand the very delicate balance it requires to maintain any rhythm, and the extremely hard work it is to find and carry that rhythm.

 

We come in contact with someone else’s rhythm, little adjustments are made and sometimes in extreme cases, our rhythm collides to completely unravel itself. As humans, there will always be other humans around us and sharing bits of their rhythm with us in each moment of connection or near connection we have with them and visa versa. Within the season of holidays our personal universe seems to intertwine with a lot of others, making our rhythm adjust in ways we aren’t expecting and frankly our rhythm can be adjusted before we even realize it. There are some people who are absolutely more in tune with intentionally seeking out a rhythm that is good for them while others are completely unaware of their universe they have created for themselves, but when someone has chronic illness it is an every moment understanding of how to move from one position to the next. It is about creating a rhythm that is built from a completely different shattered rhythm.

 

We hold that rhythm a little closer than most because it took a while for us to accomplish it and it is very much a work of art that is still in progress. When we come into moments where we know our rhythm has been bumped into, with either little or major shift from someone else’s rhythm, it is an adjustment and potentially a little difficult to readjust. It is difficult because we would love for our rhythm to be elastic, and these moments require us to realize how manipulated they can be, along with how much work it will take. When having people over for the holidays or going to others homes, it can be a change. It can be so exciting to be with others in the holidays, but there are so many effects it can have on our rhythm. Below are ideas to maintain the rhythm you worked really hard for, to respect others, and enjoy the exciting moments to come!

 

When Having Guest Over

Finding a rhythm for yourself to best enjoy the holidays and those you love.

– Know your limits and what you are willing and not willing to do.

– For those that add unnecessary stress to your life, figure out how to make conversation light or surface level to avoid aspects of the conversation that could hinder your health.

– Find a place in the environment where you can step away for a moment or two when you find yourself having symptoms or maybe just give yourself some time as a gift.

– Know you only have to share what you want to share.

– Even if the guest has been to your home frequently, they won’t ever fully know what it is to live with you. You don’t have to tell them everything, but coming up with a way to say that you just need your space or that you are ok, will help you in a lot of situations.

– Before guests come make sure that if there is anything you don’t want them to know about, it is tucked away. If you have medications, or specific items that you feel shouldn’t be out, just tuck them away in a spot where you know you personally can access them easily, but your guest can’t.

– Understand that they have a routine as well, so being away from their home is an adjustment to them in a different way potentially.

 

Consider the different situations with your caregivers and/or those you live with.

– Talk to your caregiver/those you live with about the potential schedule when guest come.

– Help them understand your limits, by letting them know what parts you feel that you would be up to doing.

– Ask them what they would be willing to still help you with during the visit.

– Figure out some private way that you could get their attention so they know you are having symptoms and stepping away.

– Ask them what their expectations of you may be or the role you may play during the visit.

– Consider having a conversation about what is ok to talk about with your health and what isn’t ok to talk about.

 

When going to someone else’s home.

Figuring out what works best for you.

– You don’t have to tell them everything about your life or your health, but give them a typical routine or what you feel you could do. This way they can figure out their schedule.

– Give them a list of food allergies. If you feel more comfortable you could potentially bring your own food.

– If you require a certain kind of bed or shower ask them about what they have that help you. Or if you can’t go up the stairs, let them know.

– Consider anything that you can provide for yourself, or bring. Knowing that it is not our home and we have very specific requirements, figure out if you can problem solve on your own. If you can’t then tell your host what you may need from them.

– If you bring a large quantity of things, make sure your host knows. This way they can adjust their home to fit certain sized items.

– Make sure you give them a reasonable amount of time to know all the above. This way it gives them enough time to adjust if need be.

– Don’t expect your host to pay for anything extra to accommodate you. Figure out the best way to either pay them if they purchase things, or bring as much as you can of your personal required items.

 

Creating a balance for your caregiver/those you are traveling with.

– When traveling with someone make sure they know what you need their help with.

– Give your caregiver/person you are traveling with a list of your medications and main doctor names just in case something happens.

– You want them to enjoy the trip as much as possible, so don’t expect too much from them, rather enjoy the moments with them.

 

Questions:

Would you rather someone come to you or you go to someone else’s home for visits?

 

T r u l y ,   L i n d y

Realization of Medical Bills and Where You Stand

 

Medical bills are typically unexpected unknowns, but with chronic illness it becomes a necessary need to survive or to figure out how to find solutions to your health issues. It is an expense that piles up quickly, yet we are not prepared for it. It can leave us in great debt and often feeling overwhelmed. When something occurs in our body, money isn’t an object. Our health takes precedence to figure out what is happening and fix it as soon as possible. We want to get back to our normal lives and focus on what needs to get done in order to understand what is happening for us to feel this way. Our health is a survival requirement, but it carries expenses that we didn’t expect. When having a chronic illness, cost tends to be a long term, very expensive unwanted addition to your personal expenses that affect the rest of your life. So not only is chronic illness affecting your body, but also your lifestyle based on medical bills alone. This article is about figuring out where you stand exactly with medical bills from different organizations, so then you can focus on your health and have a grasp of what you owe. It is about not getting overwhelmed by medical expenses, rather creating the best aspects of your time and money that you can.

 

 

Understanding Where You Stand

 

Ask directly and track everything.

Appointments can come quickly and pile up before you know it. Understanding exactly what you owe from past visits can help you track future visits more easily. Contact every organization that you think you may owe something to and ask for a print out of every visit you owe from. Have them include the dates, what the visits are for, the cost of each visit, and what you owe. Also ask them if they have any payment plan options available if you feel that you can’t pay off the total within the time frame they give you, along with what the standards are for each payment plan. Once you have an understanding fully of what you owe, start to track every single visit that you have. To help with this check out the new “What Is Owed Packet” on the Nuanced Living Shop! (Come in large font as well!) This way you can see really how much you are spending each month on medical expenses. This will help lay the groundwork for what you need to pay off.

 

 

Making sure all the numbers add up!

A few ways to make sure your office visits, versus what your insurance says you owe, versus what you’ve already paid can tend to lead to a few discrepancies. Making sure you don’t overpay consider;

– If numbers don’t add up to you or you believe you should have a credit, make sure to clarify with the organization.

– Sometimes the organization will send you an “estimate” payment bill. This means they don’t know exactly how much insurance will cover, so they estimate the cost of the visit and also at the same time want you to pay that estimated cost. The insurance may cover more than the organization “estimated.” Once the claim has gone threw make sure to see if they charged more or less. This way you will know if you have a credit or not. Also if they are an organization that sends out “estimate” payment bills, always ask for a copy of everything to track what you actually owe once the claim goes through.

– There is a potential for test/procedures/surgeries to need a preauthorization. If you do need this, make sure it happens before you actually have the test/procedures/surgeries. This will make sure you don’t get charged the full amount of a visit. If an organization doesn’t contact you to tell you if it’s been authorized you can always call your insurance.

– If a claim gets denied, make sure to contact the health care providers office immediately. If they stated your insurance would cover them and your insurance isn’t it typically means the health care provider processed the claim and they need to fix it.

– Always keep receipts. You can also write off copays (Check out “Understanding Medical Expenses”)!

 

 

Know the benefits and requirements of your insurance!

Insurance is a key to helping get the most out of your health care, but there are rules and regulations for each insurance provider, making each insurance provider and plan very different. Insurances have limits on which health care providers you can see, along with treatments that they will cover. When setting up an appointment with any organization make sure to ask if the health care provider you are seeing and the treatment that you may be having is covered under your specific insurance plan. They can provide an answer before you even set up an appointment. Along with knowing who and what is covered, it is important to know exactly what your deductible limit is and what your out of pocket limit is. These are important figures to know, because unlike knowing what and who, typically health care provider offices don’t know when you’ve reach your deductible or out of pocket. Your deductible and out of pocket is a total for all organizations you see, therefore one office won’t know what your other charges are from other organizations to know if you have hit your limit until after they have billed your insurance, which typically means you were given an estimated charge or charged a copay that was potentially unnecessary. Knowing your personal and family deductible, along with out of pocket will help to not get overcharged. So the health care providers may help with figuring out who you can see, but know that it is still your responsibility to your debt to understand what your basic numbers are, along with understanding what health care providers and treatments you are willing to spend more on if they are not covered by your insurance plan.

 

To help make tracking a lot easier what is owed, check out the “What Is Owed Packet” on the Nuanced Living Shop! (Also in Large Font.)

 

 

Getting the most for your money.

Time with a health care provider can be short and a lot of money, below are a few ways to ensure that each minute with the provider is not wasted. It is so important to make sure you utilize the time you have with a health care provider to the fullest.

– Make sure to go in with the right questions and a list of what you want to talk about. Check out “The Right Questions to Ask Your Doctor” for ways to ensure you are getting the most out of each visit

– Choose the right providers. There is a range of health care providers that provide similar services, but make sure that you find a health care provider that fits your needs and expectations to be a great teammate in this process. With chronic illness you will see your health care provider several times, so make sure to pick the right person for you.

– If a health care provider lays out steps, try to complete those steps to the best of your ability. This will help to fully see if what they offered to see if it worked or didn’t. If you feel uncomfortable with what they are offering, tell them before you leave the visit.

– Utilize the ability to contact them. Often organizations have a way to contact your health care provider. Contact them between visits if something they offered doesn’t work, or you feel that you can’t continue their plan for whatever reasons you feel uncomfortable with. If you contact them they may suggest another plan or method to try before your next visit. This saves a lot of time and money.

– If you have to travel a distance to get to your appointments, try to make all your appointments in one day, this will save on transportation and other expenses, along with time.

 

The bills will add up and continue to add up.

With chronic illness the potential for seeing multiple health care providers, doing multiple tests, and experimenting with lots of treatments is more than likely. The process may last more than expected, then adding a multiple year process to figuring out your best formula and even within that it still may require a rhythm of having multiple appointments each year. With budgeting, even if you have had an extremely strict budget and only go base off your out of pocket (which is often unrealistic), know that this may continue each year and the years can add up to one another very quickly. Even just by adding extra medical expenses (i.e. prescriptions, equipment, etc.) can add up quickly. To help with this check out the new “What Is Owed Packet” on the Nuanced Living Shop! (Come in large font as well!) Within this process know that your health is not a credit card where you find yourself overspending and you back off and pay it off, then indulge again. It is a health issue, a lifetime investment within yourself, but more importantly an issue that shouldn’t be taken lightly. You should do only what you feel comfortable with and extend yourself in the process only to the amount you want, but this is a process and setting a limit on how much you spend can potentially hinder your health. This means that your bills will keep adding up, but continue to learn how to manage knowing where you stand to continue seeking your best formula.

 

Make sure to check out the Nuanced Living Shop and all the packets that can help your health journey a lot easier!

 

Question:

How do you not get overwhelmed with the idea of debt, to make sure you keep seeking your right formula?

 

T r u l y , L i n d y

Before and Coming

 

Hello Hello!

 

I am so glad you are here! For those who have been here before I thank you with so much love! For those who are new, I am so excited to meet you and that you are here! The past couple weeks I haven’t been posting on Nuanced Living. A small break was needed, so to start the next phase with you I wanted to recap and share again all the post that have gone live so far! I hope you enjoy!

 

Post that have gone live so far!

(organized by most recent)

Fixing the Uncertainty of Timelines

FREE 2018 Calendar!

Redefining Limitations with Chronic Illness

The Right Questions to Ask Your Doctor

Understanding Chronic Illness Through Interpretation

Creating a Life You Love Despite Chronic Illness

Easy Tools to Gather Medical Records

5 Ways to Make the Expectations of Self Easier

How to Be the Best Caregiver For Your Life and the Patient

Understanding Medical Expenses

How to Deal with Our Every-changing Body within Chronic Illness

How to Find the Best Caregiver

What Does the Journey with Chronic Illness Actually Look Like

What is chronic illness?

 

Have you seen the shop yet?


 

Don’t forget to print off the free 2018 calendar for you and to share with friends!

 

 

 

What is to come within the next few couple months?

In the next few months Nuanced Living will be opening up about a lot of different topics regarding life with chronic illness, expanding, along with introducing several new products (including free ones!)! So excited for you to come back and see what we can learn together!

T r u l y ,   L i n d y

Fixing the Uncertainty of Timelines

 

Our bodies have shifted, making our lives come to a stand still and the things that used to be reachable are out of sight entirely. We see the world around us and the cultural norms of what an idealistic life should be in every aspect pass us as if it has forgotten us. We may or may not have chosen certain routes, but yet it still seems upsetting to feel that we don’t have the option of even saying yes or no. The option of having a say in our timeline, seems laughable in away. Chronic illness can seem to take control of a lot of our situations, including our overall timeline and how our life plays out. Below are ways to shift our timelines to be what we desire within our new world.

 

As individuals in this life, we look to those that are similar age or with similar ambitions to figure out where we should be at, what our goals for the next few years should be, if we have the best of what could be. As an individual with chronic illness, we often feel mentally that we want to be a part of those goals and that life, but realistically our bodies hold a different more pressing perspective of life. No matter what your chronic illness is, you find yourself standing still even if for a moment as people seem to gather their lives “seamlessly.” No matter the stage in your life or what it looks like, whether you have the perfect job or aren’t working, if you are married or not, if you are in your twenties or in your sixties, it can be jolting to your reality, but it doesn’t have to affect every aspect of the realities of your timeline.

 

We go through different stages of figuring out what is happening to us, the realities of what is about to happen, and what our life looks like. As time goes on the impression of these things seem to get greater and greater. We see the details of the differences between us and the world and what our world should have looked like. This is where we have the power to take control, to grab our timeline and make it something unique. It may not look like the worlds, but we have the ability to figure out how to stand up for it in such a strong way to make our new reality beautiful and our time lines our own that we are proud of.

 

How to create our best timeline?

Patience:

We have different stages of grieving within our body so make sure to set the limits of what you can’t do based on your personal understanding of self. At the end of the day you are the only one to truly know what your limitations are. Having patience for the journey and with yourself is key. Understanding that our timelines will shift and change, and like all others we truly have no clue what the world will hold. There will be several stages and processes within this life, along with the face that you yourself will change, so making sure you are patient and setting realistic timelines that are flexible will help.

 

Standing in Confidence:

There is a difference between standing within life and being grounded in life. We all have a perception of ourselves and where we should be, but what is it that we are really chasing? Figuring out what you stand for, who you are, what your life actually looks like, and what you feel you have power over to create your timeline. Having goals that we set for our lives and not discrediting anything that we desire creates timelines. Write down the things that you want and yes they may not come in the way or the time you thought, but never believe you are not worth having something. Chronic illness is not a power that we may have asked for and it has its limits, but it grounds us in being stronger in the individuals that we want to be, rather then the ones that are perceived or that we feel we should be.

 

Our Approach:

Social media, realities of life, whatever it may be, warps our view of what life should be. It sets standards upon us that usually aren’t realistic when having chronic illness. When figuring out how to look at these outlets, consider the simple idea of encouraging someone else who is doing something incredible within their life, because their successes in no way take away from you or your successes. Each of our lives is very different from one another and it is important to uplift people and figure out how we can be uplifted at the same time by others to have the best life within our own world.

 

It May Happen:

Don’t ever have an individual tell you that you need to be ok with something you aren’t ok with. Others may have an expectation for you, but don’t let them. Each individual on this earth has gone through very different experiences on so many levels, so create a perspective of your timeline that fit you. Others are going to have perceptions and expectations based on their own personal experiences. Let them know how you feel, and let them know how they can be a part of your timeline without dictating it.

 

Having Faith:

Faith is a very personal experience and there are so many interpretations of what it means. Sometimes having faith within our own strength is what may be needed, while other times it is finding strength in a higher power. A powerful tool many with chronic illness have used is allowing for the idea that we have no control over our timelines and what is happening to us, giving that upset and worry to something else to watch over. This is a decision that is based on your faith and your interpretation of faith. It isn’t always the only solution, but rather a piece to help create the best timeline. Also having faith in yourself is important because you can get through whatever is thrown your way!

 

 

Questions:

What was the biggest shift within your timeline and how did you become ok with it not being on your time lines?

 

T r u l y ,   L i n d y

FREE 2018 Calendar!

 

2018 is almost here and Nuanced Living is so excited to give a FREE calendar download! We still have an exciting bit of 2017 to go through till we start 2018 officially, but it is never too early to prep and get ready for the new year! Nuanced Living is about creating a beautiful life despite chronic illness. This means we get to have the ability to indulge in the most beautiful aspects of this life, even when we are given so many daily hurdles. The 2018 Calendar doesn’t have any words of encouragement or anything about chronic illness, it is simply a way I can personally give you a bouquet of flowers each month to enjoy as you feel your calendar with doctor appointments and days of rest. It is about creating your years’ landscape, with a little bit of pretty along the way.

 

 

The entire calendar includes thirteen pages; a cover page and a page for each month of the year 2018. Each month of the calendar includes the entire month and a floral bouquet drawn by me (Lindy Jacoby). It is completely FREE!!!! To get yours all you have to do is click on the link for the month and print. It is entirely free, easy to accesses, and you can not only just have it for yourself, but share it with all those you love! Share this link with others or print to give as gifts to friends and family!

 

Click and Print!

2017

December 17

2018

Front Page 

January | February | March | April 

May | June | July | August | September

October | November | December

 

 

Enjoy!

 

T r u l y ,   L i n d y

 

 

Image source : @NuancedLiving

Redefining Limitations with Chronic Illness

 

Limitations of life are typically defined by fear or moral base, our physical body doesn’t always come into play until we are hit with something like chronic illness. The presence of if we want to do something or if we should do something, based on illness. It now sets our limits. Our personal definition of limits is very different. We define our personal limits based on how we live life. As chronic illness takes over our physical capabilities, slowly or quickly, we discover limitations of life are now dictated more by our body. Some of us don’t really understand limitations of life until we have chronic illness. As chronic illness shifts within our life, our definition of limitations shifts with it. Some limitations can be constant, but some limitations can be temporary. We learn to redefine it because if we don’t it consumes us with a stress of incapability.

 

 

Our body or cavity becomes more defined. We know what is happening, we still are the same person mentally as we were before, but our awareness of our body becomes more apparent, especially when we try to push our boundary limits. Our personal limits can be going to work, maintaining your job, maintaining friendships, going out in certain types of weather, consuming different foods, going to different places, being able to do the dishes and so many other examples. It can be any gesture of life. When we realize a limitation, not by choice, but by body it can be the worst feeling. We face them head on at the moment, which especially depending on our activity this can be extremely challenging. When we realize our limitations are more recognizable then we desire, that is when we can get a choice to take care of ourselves, even when it is overwhelming and frustrating to figure out a rhythm. When we are able to recognize the challenging moments within our life, we are able to recognize us and figure out a plan to move forward with everything. Below are a few ways to help you face limitations and help redefine them to fit a life you still desire.

 

Personal Experience: One of my hardest limits I found with chronic illness are the ones that affect the day-to-day aspects. I so enjoy cooking and with all my nerve pain throughout my body, it had affected by fatigue in my arms, so my arms started having tremors, which meant I couldn’t hold a cup without two hands or hold a utensil. So I had to give up something that not only I loved, but I had to ask someone to help me with the basics needs of living. It was extremely frustrating and overwhelming, because not only did I know it was happening, it was so visible to everyone around me. It created definite limits to my life and it required me to ask someone for help. It was a stretch of my patients and taught me a lot within the process of how to maintain my emotions and not get frustrated by what is happening with my body. Thankfully this limitation only lasted about a year, I found treatment for the tremor symptom alone. It was one of my successes within this health journey. Although I may have found a treatment to cover up the symptoms, if I don’t do the treatment it comes back right away, along with when I have been in a lot more pain my tremors come back. So it isn’t an everyday symptom, but it still occurs. I am faced with limitations every day from symptoms that have and can’t be treated. Almost every day I am reminded or discover a new limit, but my desire is to live a life I love, despite the limitations.

 

Ways to help redefine the definition of limitations to your personal life:

 

The “can do” and “sometimes can do” list.

This is a concept that has got me through almost all of my limitations. Create a list of things that you love that you know you can for sure do and then instead of creating a list of things you can’t do, create a list of things sometimes you can do. This is a list of everything that isn’t on your “can do” list. Maybe it is simply a mental list that you make to yourself, maybe it is a list you share with others especially the ones you live with or your caregiver. No matter where you have it or how you hold it, it allows for you to not get rid of all the things you feel you can’t do. The “sometimes can do” is a list intending to say I may not be able to do it now, or in certain moments, I may not know when I can do it if ever, or I can’t complete this task during symptom flares. It gives yourself permission to not use the word “can’t,” along with allowing you to give yourself permission to also say that your symptoms are not in a good place to complete a task now, but you could get to it later.

 

Finding a moment of peace within the overwhelming realization.

When finding ourselves in an overwhelming amount of upset and realization about our limitations, maybe even a new limitation, pause within that moment and figure out a way to ground yourself to take a minute to figure out what your limits are extracting the emotion from the situation, as much as possible. Then step forward and try again, if you keep finding yourself in that place, don’t give up hope just know that this moment is not the moment to evaluation your limits. This moment doesn’t define your limits. When you find yourself in this situation make sure to step back and figure out how were your symptoms when you stepped into this situation, try again at a point when your symptoms are better to see if you can do it and then maybe put that task on the “sometimes can do” list.

 

Learning a new language for yourself.

When we readjust our thinking about what limits mean to us, we often discover that our personal boundaries have now shifted. We let the ones that we know we can rely on in, we push the people we can’t deal with their stress away, and we figure out how we can care for others and reshape our relationships. With this we learn to ask for help, we learn to say no in a stronger way (since our health that relies on us to not deal with unnecessary stress), we put ourselves first saying we have to take care of us first, we learn a whole new vocabulary. You will define and redefine this as you learn what your limitations are.

 

Understanding that limits, like our health are constantly changing.

As your health shifts and your chronic illness develops into one thing or the next, we learn to redefine what our limitations are and what it means to have limitations. We will constantly be changing our vocabulary of what our body can and can’t do. Patients can be one of the hardest things to do, but it can also be the most helpful tool, to understanding what is going on within your life.

 

 

You may find yourself in a moment that you’ve done a million times prior, that can’t seem to stick in that moment, let go and allow yourself to find yourself doing one of the above to figuring out if you are redefining your limits again.

 

Questions:

What is your best life tactic that you find helps when discovering a new limit?

 

 

T r u l y ,   L i n d y

The Right Questions to Ask Your Doctor

 

The very short period of time we see a health care provider can seem overwhelming, especially since we live with chronic illness every day. To make the most of each office visit it is important to be prepared and know exactly what you would like to get out of each visit. Most office visit last from a half an hour to an hour, so figuring out exactly the right questions to ask your health care provider prior to the appointment can help tremendously. Below are examples of questions to ask that will help to get the right conversation going between you and your health care provider.

On the Nuanced Living Shop, there is a packet to help you when coming up with questions for your office visit! (It also comes in large font!)

 

How can you prepare to ask the right questions from your health care provider?

– Each visit is about informing the health care provider about the issues you are having and giving an update on your health. This usual rhythm is; telling the health care provider what is going on, asking questions, then creating the next steps with your health care provider.

– Inform the health care provider about your symptoms, along with what you have tried that works and doesn’t work.

– When going in to see a care provider, there might be a layer of people you could potentially see before you see the main health care provider. The questions that you have should be asked directly to the person you intended to see.

– Ask your caregiver if there are any questions you may not have thought about, along with coming up with a plan with them about who will ask the questions in the actual appointment.

– How many questions should you ask per visit? I’m a strong believer in asking all your questions. Write down the pieces you want to talk about in an order from the most important to least important. This way you will get to what you need the most. Within those topics, you will ask several questions. Don’t worry about having a limit, rather focus on getting the information you are paying for and that you need. Your health care journey is so important and your time can be limited with a health care provider, so figure out what is the most important to you and make sure you get all your questions answered.

– Make sure to write down all your questions you have, so when you get in the office you don’t forget anything you want to talk about. To make this task easier, look at the Question Packet on the Nuanced Living Shop. (Also in large font!)

 

 

What Questions to ask.

 

General questions:

– These are the symptoms I am having. Do you have any recommendations?

– Can you explain that test/medicine/medical term?

– Can you explain what about my anatomy is different or what my diagnosis is affecting?

 

Diagnosis Questions:

– What will the next few steps look like?

– How long do you think it will take to diagnose the problem?

– What does the path of _____ really look like if I am diagnosed with ______?

 

Treatment Questions:

– What are all the treatment options?

– What do you recommend the most out of all treatment options?

– Is there any side effects with the treatment(s) that I should be aware of?

– Will the treatments affect any other treatments I am currently doing or any other diagnosis I have?

– Is there anything I should change about my routine? Exercise or don’t exercise? Don’t eat a certain type of food? Not take a certain supplement?

– How long should I take the medicine to find out if it works or doesn’t work? Does the medicine require a process to come off of?

– Based on my insurance what are the treatments/surgeries that I can actually do? (Note: not all insurances will pay for different types of treatments or procedures. You can always ask the billing office for a rough estimate of how much it will cost if insurance won’t pay for it.)

– I don’t feel comfortable with that kind of treatment, are there other ways to treat it?

– How long do I have to make a decision about moving forward?

 

Test/Surgery/Procedure Questions:

– How many times have you done this procedure?

– When will I get the results?

– How will I get the results?

– What is the test/procedure/surgery for? What will we find from it?

– How is the test/procedure/surgery different here than other health care systems?

 

Communication Questions:

– When will we be in contact again?

– When should my next appointment be scheduled for?

– What is the best way to contact the health care provider if I have questions before my next appointment?

– Can I have a summary of the visit? If you want the health care provider to write down specific diagnosis or test, ask them to write it down in the office visit summary.

– Do you recommend any specific sources for finding extended information on my diagnosis?

 

 

To help create questions there is a Question Packet on the Nuanced Living Shop! (Also in large font!)

 

 

T r u l y ,   L i n d y

Understanding Chronic Illness Through Interpretation

 

When we haven’t experienced something, we can only understand it by an interpretation of one who has experienced it. Even then we are all so different, have such different lives, different experiences, and the way we interpret is different. In this, it manipulates how we even understand another’s interpretations. Each individual will face chronic illness very differently, even if they faced the exact same type of chronic illness. We will never fully grasp what happens to another. As a caregiver, the task of understanding someone’s interpretation of chronic illness is crucial to the care that you provide them.

 

Depending on the interpreter of chronic illness, they will offer their version in great details or potentially offer very little to help with an understanding of what they are experiencing. While some interpreters may feel comfortable sharing, there are others that are going to keep their version more private. Some may decide what is going on or what it really means to have chronic illness is their personal experience, showing little to you and that is ok. Even if you are the caregiver, a specific form of interpretation is not a required. Each person gets their own right to what they share or not share. As a caregiver, it is important to understand no matter what pieces you are given, make sure to work with the pieces they decide to share.

 

They let you be apart of their health journey that consumes them, yet this is a journey that leaves an unknown to how long it will last. Chronic illness goes through ups and downs and changes over time, but it is something on some level this individual will deal with for their entirety. Through interpretation of what is happening with them, the nuances of a journey with chronic illness will become more apparent to you.

 

A few ways to better understand someone’s interpretation of chronic illness:

 

Listen with all your senses.

No matter how much they tell you about their interpretation and experience with chronic illness, listen to their entire story with all your senses. They may show you in body language, the inability to complete things, by certain words they say, they may not be able to be touched, and so much more. They wear chronic illness with the entirety of their body, so look for the signs and all the settle nuances of how they show chronic illness.

 

Understand that it is their story.

This is their experience, their understanding, and ultimately their whole life. So figure out how to not take away or add to their version. Find a rhythm between you two to make it comfortable for them to share in their own personal way. If they choose to share or not to share their story, know that you are not within their body so they can be the only one to truly state what is going on with them.

 

Figure out your role with them.

You may have taken on the role as caregiver, but what was your relationship role with them before? Whether you are a friend, a parent, a spouse, or any other role, taking on the caregiver role can sometimes distract from our initial role within their life. Your role as caregiver has probably come more to the forefront but always remembers that you are someone else to them as well. You play a huge role in their life on many levels. There will be times when it will be embarrassingly obvious to them that you are their caregiver in one way or another, but taking care of the intended relationship you have with them is very important!

 

Be patient with yourself.

It can be extremely hard to see and accept what is actually happening to our people, especially since we don’t know exactly what is going on. Be patient with yourself and the process. It is a learning curve, but find what motivates you to keep learning from this process.

 

Here are some articles to understand the nuances of chronic illness a little more and the role of a caregiver;

What is chronic illness?

 How to find the best caregiver!

 How to be the best caregiver for your life and the patient!

 

T r u l y ,   L i n d y

 

Image Source: @NuancedLiving

Creating a life you love despite chronic illness!

What does it mean to create a beautiful life, when you have chronic illness?

When we feel like our life is hardly beating, surviving in the chaos our body itself created, it is hard to consider the fact that our lives can be pulled from this current mess enough to filter in a life we love. Those who have chronic illness go through a phase within the journey where the ability to create a good life or even a life is not a possibility. We are so focused on the current situation of what is actually happening during this time. As we find ourselves standing still with the life we once knew falling at different speeds around us. We feel the weight of not only our personal selves trying to pull to grab onto something but the weight of each piece of familiarity that slips quickly from us. This is temporary. Once we are able to understand our body a little more and what is happening to our world, we are able to steady our feet, even if not fully and start moving within this new life. Senses start to figure out how to embed in this unknown landscape, not as fast as most the world, but gathering fallen pieces to build something different. We reshape our lives based on what we knew, what we now know, and what is unknown. Even though our world seems to be in pieces, we start to find flowers growing in the rubble. This allows us to create a beautiful life despite chronic illness. It is a life of broken pieces that are going to be very familiar too quickly, but it can be a world that we can create something beautiful out of the overwhelming and unwanted world to see light again, to become aware with our senses again and to regroup to the understanding of who we want to be. A life you love can be created individually, despite this unwanted gift we have received.

 

A new product, two art prints in one package called the Create a Life You Love Art Print, is now sold on the Nuanced Living Shop for only $2! It is an instant download once purchased for you to print right away to be a helpful tool to organize your medical records more easily!

How can you create a life you love?

Understanding that it is ok to be happy!

We often are taught that it is ok to be sad in this world because the world usually requires strength. Projected sadness is a gift, strength is a gift, happiness is a gift, but we all have those gifts. When we are given a chronic illness people often assume or create a projection that we have to be sad or down in order to not be doing well or struggling with a chronic illness. They don’t realize that our happiness isn’t a string attached to our chronic illness. Give yourself permission to cry when you need to cry in the boundaries you have personally set with others, but also give yourself permission to laugh, to be happy, to embrace the emotions of joy! Even if you are in the ER (Emergency Room) and your sibling says something to try to cheer you up, you can feel whatever you want in any situation. Give yourself a gift by not shutting out your happiness. We are already struggling to figure out how to have constant strength in this situation, so allowing yourself to have any emotion and allowing ourselves to share it when we want to share it despite others judgments, is crucial.

 

Redefining and seeking your definition of what a beautiful life means.

Every single person has a very different perspective on what the definition of beautiful is. The perspective that we have maybe on what our past look like. We understand what our past looked like and the makeup of what made it beautiful, making the transition to the new life difficult. Sometimes we just want one more breath of the past, of our past bodies. Figuring out what defines a beautiful life now, even if it means completely redefining what beautiful means to you currently will be key to future happiness. Seeking beauty within chronic illness, will allow you to set aside the ideals of the past, but recognize the beauty in the moment and the future. It is a lot harder to do than say, and may take time to figure it out, but continue to try to redefine the definition till you have it figured out.

 

Have the courage to let go of the things that you can’t change.

We can’t change things we don’t have control over. Life itself brings challenges to anyone in any situation. These challenges are pieces we can’t control and can be overwhelming, yet when chronic illness is then added to the mix, life seems too much when challenges arise. Sometimes the unnecessary stress requires boundaries, cutting it from our lives, or simply not giving it the brain space it craves for. Figure out how to find what you need to bring you back to the enjoyment of life and not get dragged off in one direction or the other by unnecessary stress.

 

Don’t set unknown limits.

When facing a chronic illness, we hear constantly about the “what we shouldn’t do” and the “can’t dos.” We face the challenge of what we personally know our are limits, but when outside sources seem to create a greater limit boundary we feel overwhelmed by the lack of potential for our situation. Yes, there will be limits, days of limits or even weeks of limits, but understanding that we don’t have to set limits that are unknown is ok. We are individuals facing similar issues to others, but it will look very different on each of us, so don’t set limits on the “what ifs.” With that said you don’t want to push yourself in a direction that allows you to make poor decisions. So if you are wondering if you can do something or not, not only check in with if you should, but also take baby steps so chances of something going bad are less likely to happen. Don’t set the limits of your life based on unknowns, but also make sure that you are making the best choices for your life that are healthy, happy choices.

 

 

Now go find create your version of a beautiful life!

 

A new product, two art prints in one package called the Create a Life You Love Art Print, is on the Nuanced Living Shop for only $2! It is an instant download once purchased for you to print right away to be a helpful tool to organize your medical records more easily!

Questions:

How do you create a life you love despite chronic illness?

 

 

T r u l y ,   L i n d y

 

image source: @NuancedLiving

Easy Tools to Gather Medical Records

Our entire health is laid out on pieces of paper, or transcripts on a computer. It is sprawled out in a form that makes all the impossible work that we have endured over the past months or years seem so little, exposing every detail of our physical self. We have sought out help within the health care system to continue to seek help, understanding, and find a resolution. All of it is written down in detail on a platform that is divided, searched over and often looked at with a magnifying glass by others within the health care system. It is a way to try to connect all the unknowns, lay out what has happened thus far within the process of our health, and show all the details of what one health care system have discovered.

 

Often we don’t even see what occurs on our medical records unless we ourselves request them. Usually, we receive visit summaries that give a very brief description of what is occurring overall within our medical records, but this is so dumbed down in a way and shows little detail of what actually is happening to us. There are many reasons or purposes for gaining your medical records. Some of these reasons include; access to our own personal information, gaining information for when we transfer health care providers or facilities, gaining proof for social secretary or state disability, gaining information for a medical lawsuit, etc. If you have been to see any kind of health care provider, you have a medical record. This post is to help you find easy tools for gathering your medical records, along with answering the questions we all wonder about regarding medical records.

 

Why does Nuanced Living use the term “health care system?”

For this article and other articles, the term “health care system” will be used several times. With certain aspects of medical care, such as medical records, there is not a specific location or formula from where you can get them. Our medical records can come from many sources in different offices, which means there isn’t a particular name for where to get our medical records. Sometimes we get our medical records from clinics themselves, sometimes from general organizations, hospitals, or medical universities, or there are even times if you are working with a larger system where there are clinics and hospitals you may receive your medical records from a general business office. The term “health care system” allows for the multitude of different potentially places to be simplified for the purpose of this article and other articles on Nuanced Living.

 

A new packet called the Medical Records Packet is now sold on the Nuanced Living Shop for only $2! It is an instant download once purchased for you to print right away to be a helpful tool to organize your medical records more easily! (Note Packet comes in standard and large font!)

 

 

What is the formal definition of medical records?

Medical Records:

A chronological written account of a patient’s examination and treatment that includes the patient’s medical history and complaints, the physician’s physical findings, the results of diagnostic tests and procedures, and medications and therapeutic procedures.

 

Why is it so important to gather our personal medical records?

Gathering our medical records can seem like a daunting task, and somewhat questionable based on if it will really help. Its importance is greater then you may know. Medical records can help with having control of your health care by knowing exactly what is in it, seeing if there are misdiagnoses or streamlined diagnosis, ability to ask questions from doctors, and creating the knowledge base of what you need to know about your body, along with your health. Chronic illness is a lifelong relationship with not only yourself, but with your health care providing team, so having the knowledge is important. Knowing your medical records and gaining access when certain situations require your medical records, helps you understand what your path has been, and the possibilities of the future.

When is it important to get my medical records?

Medical records are important to gather when needed for personal reasons when requested by your health care providers (usually if you are transferring or switching health care systems), or requested by state or personal lawyers under your permission. There are some situations like stated above in the article, that are crucial to gaining knowledge for yourself and the participating parties. For example, if you apply for disability or need your medical records in any form of a lawsuit. You don’t need to have a reason to gain access to your medical records, but within the listed situations I highly recommend that you gain your medical records.

If we don’t have anything “major” on our medical records, does it matter to gather them?

Yes, it is very important for you to gather your medical history no matter how big it may be, because you may have important details within your record that you don’t even know about or may undermine.

How far should we go back within your health history?

It is important to gather as much information as possible about your personal medical history, so go as far back as possible. You, along with your doctors can learn so much about your health and what potentially is happening based on your medical history. If possible gather as far back as possible.

 

There potentially could be multiple locations you will have to gather your medical records from, which is why Nuanced Living Shop offers the Medical Records Packet for only $2, to help make the process of gathering and organizing your medical records a lot easier! (Comes in standard and large font!)

 

 

What is the process to get access to your medical records?  

Note: Each step may vary depending on the exact health care system you are going through to get your medical records.

Step One:

If you don’t know the direct phone number to gain your medical records, contact your health care providers office. This way they will either; tell you the process with their office directly, direct you to another phone number to call, or assist you to a specific website.

Step Two:

No matter where you are directed you will have to print off a privacy form that states why you want to gain your medical records, along with dates of records you’d like to obtain, what information you want, disclosure stating you will pay for the medical records copy, etc. This form will either be emailed to you, located at a doctors office, or on a specific website to print off.

Step Three:

The form will have to be printed off. Usually, you will have to fax it to a specific location and wait a period of time. This process can take 30 to 90 days. On the form, you will have an option if you want to pick up your records, have them emailed, or sent to the address you stated.

Step Four:

Once your medical records are ready, you will have to get them based on the option you choose. This is the point you will pay for them and receive them. Pay may vary depends on the requirements of the health care system itself. Sometimes the cost is by page, while others it is a cap of a certain amount. Also, the form of your medical records will vary depending on the size. Depending on the size of the file, they may print off your medical records, or put them on a compact disc from.

 

Note: You can write off the expense of medical records as a medical expense on taxes. Nuanced Living Shop has a Medical Expense Packet to help with your Medical Expense right offs. (Comes in standard and large font!)

 

 

Key pieces you should know about your medical records?

– Once you receive your copy of your medical records know that everything past the date that you submitted your form to the office will not be within your records. So make sure you get additional information every once in awhile to keep your files up to date. On your request form you can state the specific dates you want, so you don’t have to pay for everything over again.

– No matter what form you receive for your medical records, make sure you always have a personal copy.

– The only people that should have access to your records are your health care providers, their personal team and you. No one should be able to access the information unless you personally give them the ok to access it.

– If you have questions about your medical records contact your healthcare provider.

– Really look at your surgeries notes, test notes, and diagnosis, so you understand what was seen and make sure you know for yourself what information is key when moving forward.

– Go to Nuanced Living Shop to grab your Medical Record Packet to make it easier to organize your information.

 

Question for you:

What is the most difficult aspect you find when getting your medical records?

 

 

T r u l y ,   L i n d y