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

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

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

5 Ways to Make the Expectations of Self Easier

How our expectations of self have unwillingly shifted based on chronic illness:

After the symptoms have hit our lives, we find ourselves crawling into ourselves, into the world we have now created where we feel sanity is keeping us afloat. Our standards of ourselves have shifted unwillingly and our standards of others even more. What used to be a life of picking out what we craved from the millions of options within this world, is now figuring out how to mask the details of what we have become and forced to the choices that still seem tangible. Our sense of awareness leads to the idea that we are so far removed from what was, but at the same time understanding the limits and expectations that have unwilling shifted based on our symptoms of chronic illness.

Some aspects of our lives that have shifted are pieces that seem impossible to maintain, though they are basics of what keeps us going and fundamentally taking care of ourselves. We can’t even uphold these basic needs because energy is lessened and we are trying to figure out how to use the little amount that we have. As our lives have shifted, making our expectations of selves different. We are painfully aware of how the way we dress changed, how our friendships seem to drift, how the environment we live in doesn’t have the same feel. They shift because they are hard to maintain and depending on what our symptoms require we may simply just need things to look differently. We may not want them to shift, but figuring out how we can best live within the new normal will allow for those moments that we want to crawl deep inside ourselves less painful, by nurturing the basics of our lives we desire despite everything the symptoms cause.

Below are 5 ways to make the expectations of self, easier despite chronic illness, by touching on different areas of our lives.

 

5 ways to make the idea self expectation seem easier!

 

  1. Reshaping what relationships look like.

    It is important for each of us to connect with people in one way or another. Our relationships shift based on; how much time is spent with them, when we spend with them, what we do with them, and maybe even how we are symptoms are when we are with them. Initially, when we have symptoms, our social life will feel as if it came to a complete stop and be very different. We never know when we are going to feel ok enough to spend time with loved ones and it may be months before we get back to someone. Surround yourself with people who will understand that you care deeply for them, but seeing them on a regular base is more of a want then a reality. Also the type of ways you can spend with them may shift and change, you may find yourself having more conversations over the phone, coffee dates during hours that you usually have fewer symptoms, having plans in environments that won’t affect your symptoms, or creating plans with a group so you can step away if needed. Create a list of places you feel comfortable spending time at and figure out when your best hours are (when you tend to have the least amount of symptoms), and set aside one or two times a month to spend with someone. Also, give yourself credit that you may not feel good, so you can always change plans!

 

  1. Understanding the foundation of who we are.

    Symptoms can take control of our emotions and set us up in a spin where we can’t focus on anything but what is happening to our body. We lose what we thought defined us as a person. We deal with life differently than we previously did, so how can we figure out what kind of humans we want to be despite all the changes, the upset, the stripped life of what we thought defined who we are? We figure out through chronic illness what is important at the core and how we want to be defined. We as individuals may feel overwhelmed by our new situation, but there is also the idea that we are still us fundamentally, with the ability to have control of making decisions within our circumstances. We get to decide how we interact with others, our choices, how we decide to get through life, how we love and care. Figure out what is important to you fundamentally and figure out what kind of person you want to be and yes it is so hard with chronic illness, but we have the best version of us.

 

  1. Staying motivated to do the basics.

    Basic hygiene can be brushed off or set aside so easily because even those are so difficult when we are having symptoms. The idea that a shower takes so much effort and brushing your teeth twice a day, ha try for maybe once a day. We have little energy, but there is a list of what our body requires along with what health care providers require, which makes the basics fall to the side. Create a list of basics that you feel you don’t do within your daily routine, but need to. Pick one of the items and focus on it till you get the foundation of it in your routine, then add another. Figure out when the best time tends to be to do the task if you need help with completing the task, or even what tools help you complete the task in the best way despite your symptoms.

 

  1. Figure out what motivates you.

    There are days when waking up n is all that you can do. There are days where getting out of bed even seems incredibly difficult. Not only do we deal with symptoms, but our lives that are now a result of our symptoms, like it or not require us to find a great motivation to keep moving forward. A motivation that allows us to get out of bed, helps us to move forward with treatments, pushes us to take care of ourselves in the best way, and encourages us to keep seeking the best lives. These motivations can come from anything. Some examples may include; your kids, your spouse, your pets, yourself, something living you have to take care of, having a deadline, accountability, plans, knowing your importance within a situation, a higher power, a good book you want to finish, etc. It may change day to day, depending on what you need to do for that day. Create a list of things that motivate you to keep moving forward and carry the list around with you or place it somewhere that can be a reminder of the motivations within your life.

 

  1. Creating a “can do” and “maybe sometimes can do” list.

    Saying “I can’t do it,” is really hard to wrap our mind around, so let’s create the idea of “sometimes I can do it.” This means that maybe some days you can do a project with such ease (even if it is just for 10 minutes), sometimes you can do the project with a stop and go process, and sometimes you just need to do something different. These projects can include; house chores, work requirements, socializing, etc. Feeling that you can contribute to this world is important, not only for you and what you are personally experiencing but in general to your people. With this said, though, there are some things that we can for sure do and there are some things that we “sometimes can do.” You’re “sometimes can do” list will probably seem a lot longer then your “can do” list, but this allows for you to feel that if there are days where you can contribute and days where your energy needs to be spent somewhere else. There might also be items on your “sometimes you can do” list that you may never get to. Don’t worry about it for a second. Create the two lists and talk to the people you live with. Remember the list can always shift and change.

 

Question:

What is the hardest self expectation you know you have to maintain and how do you maintain it?

 

T r u l y ,   L i n d y

 

 

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

If you are a caregiver you carry a new unique weight within your life. You have the emotion of someone you care for hurting, you want to do everything you can to help heal them, you carry part of a key component that drives another’s life, and on top of that you have to maintain your personal life within the new responsibility. A patient’s life with chronic illness is a weakened life within a world that is built for “healthy” people, and as a patient, we need help on many different levels. As a caregiver, you learn to adjust and figure out how to be the best caregiver to the person you have chosen to help, along with still maintaining your personal health and life to the best of your abilities. Overall time allotted to the patient can look very different for each caregiver; either you take on the role as a full-time caregiver by having the patient live with you, you may be that who makes sure the patient gets to their appointments, or you are somewhere in between those two extremes. No matter how much your role exist in another’s life, it is important to understand what your role can be and how you can be the best partner within someone else’s healthcare journey.

Know that your time, love and sacrifices never go amiss. We as patients may not always express our gratitude, but our perspective of life has shifted and sometimes it can be difficult to be outside of the symptoms that now are apart of our lives. We try to be the best advocate of how we feel and what is happening within ourselves, so even when we may not seem like it trust us that you are important beyond knowing. Even though you are in a position where you see our best selves and our worst selves, it doesn’t mean that we love you less or hate you, it means that this is a really hard journey for us, as patients, be forced to push our bodies in new ways.

Part of the role as a caregiver is to make sure you can be the best match as a caregiver for the patient. Check out “How to Find the Best Caregiver” article, to see what some expectations may be of this type of relationship. Your ultimate role is to be the best partner within the health care journey of someone else.

 

Note: “How to Find the Best Caregiver” article describes what a caregiver is.

Life changes to expect as a caregiver:

Caregivers tend to be, but not limited to, the ones closest to the patient and they may not know that they have taken the role of a caregiver, until ten steps within the process. No matter where in the process you are there is the opportunity to recognize if you can be a proper caregiver to the person needing it, or not. Below is a list of changes that one could expect the sudden effects of chronic illness.

Caregivers Life Changes:

– Vacation time may now be spent on going to appointments or helping the patient out.

– Flexibility is key. Depending on what is going on with the patient, they may need you at different times for different things.

– The patient may need to live with their caregiver or have the caregiver live with them, for either a brief or extended amount of time, depending on the status of their health and financials.

– Unfortunately, finances become an issue with someone with chronic illness, where they will have to rely on their caregiver or someone close to them a lot. They may need help with food, bills, rent, etc. To best understand what is going on and how to be the best help within the caregivers’ personal limits come up with a plan with what they need, what you are willing to offer and create a plan. If they have to become financially dependent on the caregiver then remember that this is extremely embarrassing, difficult, and something they can’t control.

Patients Life Changes:

– Relationship roles and types will change or shift.

– The patient may not be able to work anymore.

– A drastic change is going on within the patient’s bodies that they can’t control and are trying to best understand their new personal physical limits.

– Feeling that their life is changing in a huge way and the idea of having less and less control is more prevalent than ever.

– The patient bodies are now viewed very different with themselves, along with everyone else.

– Also, check out “What does the journey with chronic illness really look like?” article for a little bit more of a perspective on how their life might be changing.

 

What are the roles as a caregiver?

As a caregiver, there are certain roles that are potentially part of what will be needed. Check in with your person to understand what they may need from you and what may be a potential. Having a routine of checking in with them will help the communication and allow for a better partnership so you both know what is the need and what you can personally offer.

Scheduler: Appointment are key to figuring out what is going on and how to take care of the patient. If you are not the scheduler make sure that the patient knows when you are able to go to the appointments if they need you to.

Transportation: Depending on the chronic illness, the patient may not be able to drive, or only drive during certain situations. Some situations where they may need you include; driving after procedures, surgeries, or even just rough appointments. Figure out if you, as a caregiver, are taking their car or yours, along with what is the most comfortable for them.

Motivator: As a patient, there are certain times when we just need a little boast to say we can do it. We want to know its ok if we can go through an appointment, we can try a new treatment, we can cry if we want to. Set boundaries on when you are able to be that motivator, that encourager. If you can’t be that then let them know and help them find someone else who is better suited for it.

Chef: Depending on the chronic illness, you as a caregiver may have to take over meal prep or some meal prep. Talk to the patient to find out their dietary restrictions, if they require their meals to be taken at certain times, or more frequently. Make sure that you know what is needed if you play this role because food can be crucial for their health.

Private Helper: Sometimes an extra set of hands in the most intimate areas is important but hard. Someone who will be in a way a home “nurse” taking care of things that can be so embarrassing and so much more detailed then the patient likes to admit. Our bodies are trained to be private and give away when we desire, but give away in a more beautifully detailed way. Chronic illness can force us to expose our body that is not natural and in ways that we had hoped no one ever sees us.

Second Hand: The patient may need a second hand with different pieces that either they can’t do physically or mentally on their own. This is different than above because it may not be as intimate, but it still changes our personal limits. This may include help with treatments, help with physical therapy, etc.

Researcher: It is great to understand what is going on with the patient. It is important to understand potential symptoms, treatments, conversations, etc. If you find something that is interesting have the conversation with the patient about it, but ultimately let them have the choice about what they do with their body.

Secret Keeper: This is not your journey. It is not your journey to tell everyone. You are apart of someone else’s journey and it affects your life, but the details of someone’s life are their own. Talk to the patient to see what they are willing to have exposed because you don’t want to lose their trust.

Traveler: Depending on what is required and what is available, traveling may be required to get the treatment that is needed.

 

What are questions that you should ask?

No matter what stage you are in within the patients’ health care, you can always ask questions.

Questions to ask the patient as a caregiver:

Check out the article “How to Find the Best Caregiver” for questions that the patient should feel like they can talk to you about. Be open and honest with the patient and ask anything you feel that you need to, but know that it is ok for them not to tell you.

– What do you need from me?

– What do I need to know about your medical history?

– How can we create the best roles for each other moving forward?

– How often should we check in with each other to make sure our routine is working?

– This is what I can provide for you, is that ok?

Questions to ask a health care provider:

Let the patient be the director, as much as possible, when having a conversation with their healthcare providers. Ask the patient prior to appointments if it is ok to interject if you have questions. It is great to be a second set of ears, but time with a health care provider is so limited and it is important to make sure that the patient gets all the questions they need to be answered, because it is about them and their life. A way to make sure that both of your questions get to acknowledge and you both feel good with an end goal; set an hour aside before your appointment to go over all the questions you and the patient have and write them down on a piece of paper to come up with a plan.

Below are general questions. Specific questions will be tailored to the patient condition and examples are not listed.

General questions:

– What is going on?

– What are the timelines?

– What are test and procedures that you recommend?

– What do you feel would be the best option of treatment?

– What are potential side effects of ____ treatment?

When your patient seems to feel overwhelmed this is when you would ask the questions for them, by reading the situation and seeing where they are. Another great reason to set time aside to go over everything.

Also, note health care providers will know who has control over the conversation and the health of a patient. They will always ask the patient what they want for their own safety and comfort. Make sure that you don’t control the conversation and allow it to be the patients’ conversation.

What if you don’t feel comfortable medical terms?

If neither you nor the patients have any history within the medical field, it can be difficult and overwhelming to sometimes understand what health care providers are saying. Health care providers should be more than happy to offer explanations for any terms that you may not understand. There are so many words that can be thrown out concerning anatomy, medication, treatment, procedures, types of illness, etc. Sometimes these are theories and will have nothing to do in the end with the patient and other times they have a lot to do with what the patient needs. One option for a patient is knowing that the time is limited with health care providers, meaning each term the patient may not understand you could either have the health care provider explain it or ask them to write it down so the patient can fully consider all their options. There is always the option of contacting the office if you still aren’t fully sure what they meant, once you have left. You never have to make a full decision while in the office in front of a health care provider, make sure you know what is happening with the patient’s body is important to making the right decisions for them.

You do not under any circumstances have had to have medical field experience in order to be a caregiver.

 

 

Remember that even though you are taking the time to care for someone else and play that role within someone else’s life, it is so important to take the time to take care of you and your life as well! Keep the communication open as much as possible!

Question:

What have you found to be the most important role as a caregiver, within your journey with chronic illness?

 

T r u l y ,   L i n d y

Understanding Medical Expenses

 

The amount of money you find yourself spending on health care necessities can be overwhelming. Not only is it surprising the amount you spend, but it also can be surprising on what you are spending your money on. No matter what type of chronic illness you have, seeking relief for symptoms is a must, and a lot harder to find or maintain then we may think. Which means that a lot of money is spent finding the right solutions and maintaining the solutions that seem to work. Initially, we all understand that there are certain charges that are typically required like, copays, office visits, procedures, lab work, and such, but when it comes to expenses outside of the norm we can be shocked by how quickly it all adds up.

During office visits, typically you will receive recommendations for different products from your care providers. These items are recommended to see if they can be a source of help for your symptoms that may not be provided at the doctor’s office itself or through prescription form, which may be items that you can pick up at any local store or even Amazon. Some of these times may be considered medical expense write-offs for your taxes.

Nuanced Living Shop is officially providing a Medical Expense Packet for only $2! This packet includes a list of items that can be tracked as medical expense write-offs, along with a medical expense tracker that you can personalize with every item that you have purchased throughout the year that can go towards your yearly medical expenses tax write-offs! This is a download, meaning you can print it as many times as you want once purchased!

 

What is the formal definition of medical expenses?

medical expenses: any cost incurred in the prevention or treatment of an injury or illness.

It can be difficult to justify some medical expenses, because we may feel overwhelmed by the total amount of medical expenses, but there are ways to save, so make sure that taking care of you is a priority.

 

 

What are some examples of medical expenses?

With any item that you write off as a medical expense, you will have to make sure that it is an item you have to use to better your health within the condition(s) that you have been diagnosed with.

A great way to ensure that the item can be written off is by having your care provider write a prescription for an item (i.e. compression stockings, wheelchair, etc) or if the item can’t be written in a prescription form (i.e. specific books, certain over the counter medication, etc) have your care provider write it within their closing notes that they give you at the end of your office visit. Make sure to keep a copy of either the prescription or written note to put with your receipts, to make sure that you can verify you spent money on a particular item.

Keep track of every item cost that could potentially be written off as a medical expense. This way if you do have any questions for a tax advisory, you will already the information available. Remember you will need to keep track of all receipts to verify the purchase.

It is important for me to always be as efficient about the non-fun stuff in life as possible, to make sure that I don’t have to worry about those pieces and don’t waste the little energy I have on them. So for all those that are like me, I have created a Medical Expense Packet (for only $2!) on the Nuanced Living Shop to make the logging process easy for when tax season comes along! It is a simple download, allowing you to print off as many sheets as you desire for your personal use! I highly recommend putting your receipts and prescriptions in an envelope, along with downloading the packet to make your life so much easier in the future!

All these pieces will help make sure that you get the best write off, along with making sure you write off the right items.

 

Some examples of medical expense write-offs:

– Acupuncture

– Any treatment at specific centers that help with any type of addiction.

– Ambulances

– Artificial Limb

– Bandages

– Books and Magazines

– Guide Dog or other Service Animals

– Hearing Aids

– Home Care

– Medicine

– Surgery

– Supplements

– Therapy

– Transportation

– Prescriptions

 

To view a more complete list check out my Medical Expenses Write Off Sheet included in the Medical Expense Packet, on the Nuanced Living Shop. For only $2 you will receive a more detailed list, along with a detailed chart to print off as much as you’d like for your personal medical expenses that you can write up. It makes it a lot easier when tax season comes to save a lot of money!

 

 

Why is important to track your medical expenses?

If you can save money, or get more money back on your taxes why wouldn’t you? 

Medical expenses can be written off with your taxes. Within certain states, you will be required to spend a minimum percentage of your income on medical expenses before you write the rest off. With chronic illness, you will find it easier than you think to meet that percentage. Make sure that you speak with a tax advisor as far as exactly what can be written off as medical expenses within your state, every state may vary.

Note that anything you write off has to specifically be used for medical purposes and there are limits to what you can write off within that standard.

 

 

So what are you waiting for? Go grab your Medical Expense Packet and make sure that you write down every cent, to get the most out of your health purchases and your care!

 

 

T r u l y ,   L i n d y

 

 

Note: I am not a tax advisor to make sure that you check with your financial or tax advisor if you have any questions about specific items.

 

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