Today I’m talking about Chronic Disease. 
Whether that’s cancer or lupus or liver disease- any chronic condition that you have to live with and survive can relate to the topic today.  The changing mindset.
I happen to have had several chronic diseases.  5 years ago, I was surprisingly diagnosed with a genetic liver disease that impacts my immune system.  I also developed arthritis, borderline lupus, type 3 diabetes and Hashimoto’s thyroiditis during that time too. 

I’m happy to say in the last year I no longer have glucose intolerance or severe problems with arthritis or lupus and my thyroid disease is controlled- but it’s been a long road.  And I’m still a stage 4 liver disease patient in a clinical trial.
I am more of a type A personality than a type B.  I had an abundant amount of energy, an amazingly rewarding career and an active family. 

HOW in the HECK could I be a sick person? 

When I told people about my disease, I always mentioned that before my “surprise dx” that I was perfectly healthy- aside from that 1 thyroid pill a day I took for a low functioning thyroid. 
I’m not a “sick” person. I support “sick” people!

I. Am. Not. A. Sick. Person.
But I was.  I had become one.  

I was tired- not just “I’ve had a busy day” tired, but fatigued to the bone tired. My skin was rash-y and ashen and I had developed some acne from the new medications.  My joints and muscles hurt- a lot.  I suffered from leg cramps and neuropathy. Insomnia at night because of the pain.  I stopped going out.  I didn’t enjoy crafting or cooking. 
I struggled to let anyone help me.  I’m stubborn to a fault and won’t ask for help. One productive day of house cleaning meant two days in bed.  WHAT in the HECK was happening to me?
I was living a sick person’s life.  I was a sick person.

In my mind I was a healthy person. I was capable and independent and strong. My nickname was Ninja for heavens sake!  
I had to change my mindset and reconcile myself to the here and now.  That didn’t mean giving up…it meant giving in to my current situation.  If I needed help, I had to learn how to ask for it.  If I worried about pain, I had to recognize that it would be best if I stayed home.  I had to relearn my limitations and use good physical moments sparingly.  I was different now.  I had more empathy and sympathized with the patients I supported.  I no longer held myself to such high expectations and I started to celebrate small accomplishments. 

I had to learn who this new me was.  I was not my disease but my disease limited me.  What did this Katie like to do? What brought this Katie joy and happiness?  What kind of people did this Katie want to surround herself with?  What was most important to this new me?

I hit my lowest point and then I started my climb back up.

Long story short- 18 months ago I aggressively sought out a clinical trial.  It’s a double-blind trial but I know it’s working and I’ve gotten stronger and healthier.  I’ll never be the same person I was before- but I’m a better person.
While I’m not as physically strong as the old me was, I’m stronger in mind and soul than I’ve ever been right now, today.
 
What about you? 
What’s your mindset?
Who are you today?
Are you defined by your disease or have you challenged yourself to try to overcome it? 

I want to hear from you.
Until next time, may your coffee kick in before reality does
KatieB
Listen to the podcast here: ​https://anchor.fm/katiebrown/episodes/CHRONIC-DISEASE-The-Changing-Mindset-e4qhcb

Many of us became caregivers without any warning. 
One day you’re coming home from work and thinking about what you’ll fix your little family for dinner and the next thing you know your loved one is diagnosed with a life changing, future-altering cancer.  What. In. The. Heck????  (Picture standing in the middle of the street with a speeding bus coming right at you- THAT is how I felt- every freaking day)

Without a manual or any type of guidance or mentorship you are swimming against the current of the healthcare system and all your emotions.  Everything changes- except the responsibilities you had before the cancer diagnosis.  You still have the mortgage and those utility bills to pay.  Those don’t stop for cancer.  In fact, in a lot of cases, your expenses increase after cancer.

So, what do you do?  How do you balance caregiving and your career?  Is that even possible?
When my dad was diagnosed with lung cancer, I had just started a career in the legal industry in downtown Dallas.  I was my dad’s primary healthcare caregiver.  I had a demanding job with a two hour commute every day, and I was married with a 4-year-old.

I did everything wrong.  I never asked for help.  I thought I was the only one who could do anything- as if the more I did it would be enough to cure the cancer.  Believe me, martyrdom while caregiving is never pretty.  Burnout is real. You can make yourself physically and emotionally sick trying to do it all yourself.

So, because hindsight is 20/20, I have some advice for that caregiver standing in front of that speeding bus.  Hopefully, some of this advice will help you too.

First, get organized at home.  This means creating a priority list, a to-do list, a medication list, an appointment calendar, etc.. 
Priority lists are things that you and your patient must do (like go to drs appointments, pick up and take medications, pay bills, purchasing groceries for meals, etc…)  A to-do list can be one or more lists of all your top priorities and secondary priorities.  Secondary priorities are things like housekeeping, laundry, yard work and other household chores for both yourself and the patient if you don’t live together.

Together, you and the patient come up with a plan on how to get things done on your lists.  Are there other members of the family, friends or neighbors that can help you with the patient and household chores?  How does the patient get to and from appointments and treatment? Having a caregiving action plan will set expectations and give you and your patient the chance to work through the scenarios.

Next, get organized at work.  Have a discussion with your manager.  Let him or her know that your loved one has been diagnosed with cancer.  Let your manager know that while this is a difficult time in your personal life that you are 100% committed to your job.  Ask about flexible work policies and if you and your manager can come up with a plan if your loved one has a health emergency. Is it possible for you to have a flexible work schedule or work 1-2 days from home?  It’s easier for your manager to be supportive if you’re still a productive member of the team. Whether or not your manager can make any accommodations for you, he will know that you are honest and still devoted to your job.

Brush up on the Family Medical Leave Act, or FMLA in case this is something you may need.
The FMLA allows you to take up to 12 weeks off every year, without pay but with job security. Here’s what you should understand about the law:
You must meet certain requirements. In general, you must work for a company with at least 50 employees, a government agency, or elementary or secondary school to be covered, although state laws may cover you at a smaller employer, so do your research. You must have worked there for at least 12 months, and for at least 1,250 hours in the 12 months prior to taking time off. And you must work where your employer has at least 50 employees within 75 miles.
You might have to use your vacation first before using FMLA and you don’t have to take it all at once.

I didn’t use FMLA and didn’t actually take much time off except when my dad had an emergency.  I found going to work a much needed mental and physical break from caregiving.  For at least 8 hours a day I could immerse myself in something other than cancer care, worrying about prognosis, side effects and what the future held.  I don’t want to paint a picture that things were easy once I got to work…it wasn’t…and there were issues- like bursting into tears in the elevator when a coworker I barely knew walked up and said hi to me, yelling at my cubicle mate to “shut up please!” while I was on the phone with the doctor and getting written up for that.  Like I said, hindsight is 20/20.

I firmly believe that any type of balance in your life stems from openly communicating your situation, asking for and receiving help, and practicing regular self-care. 

Imagine if you took care of yourself as well as you took care of your loved one….
Chew on that friends.

Until next time- May your coffee kick in before reality does...
​KatieB
Listen to the podcast here: https://anchor.fm/katiebrown/episodes/CAREGIVERS-How-to-Balance-Caregiving-and-Your-Career-e4qh0l

Let’s talk about burnout, shall we?

It’s real and unless you’ve achieved expert status in self-care and have a legion of paid caregivers and employees helping you around the clock- eventually you’ll visit burnout town too.
In the National Alliance for Caregiving and AARP Public Policy Institute survey, 40 percent of caretakers felt emotionally stressed, almost 20 percent said it caused financial problems, and about 20 percent felt physically strained.
Almost every caretaker experiences burnout at some point. If it does happen and it’s not addressed, the caregiver eventually becomes unable to provide good care.
 
For this reason, caregiver burnout can be harmful to the person receiving care as well as the caregiver.
According to healthline:
Signs and symptoms
There are warning signs before burnout occurs. Being aware of and watching for them lets you know when you need to take steps to combat or prevent the stress you’re experiencing.
 
General warning signs and symptoms for caregiver burnout include:

• anxiety
• avoiding people
• depression
• exhaustion
• feeling you’re losing control of your life
• irritability
• lack of energy
• losing interest in the things you like to do
• neglecting your needs and health

When it happens, caregiver burnout has both physical and emotional signs and symptoms. Physical signs and symptoms include:

• body aches and pains
• fatigue
• frequent headaches
• increased or decreased appetite that may cause changes in weight
• insomnia
• weakened immune system leading to frequent infections

 
The emotional signs and symptoms are less easy to recognize, and you may not notice them. Some of these are:

• anxiety
• becoming angry and argumentative
• becoming irritated easily and often
• constant worry
• depression
• feeling hopeless
• impatience
• inability to concentrate
• isolating yourself emotionally and physically
• lack of interest in things that used to make you happy
• lack of motivation
• Developing negative behaviors, such as quickly losing your temper or neglecting your caretaker duties, is another sign of burnout.

Caretaker burnout can be diagnosed by your doctor or mental health provider. There are also self-assessment tests you can take to determine if you have burnout.
So lets talk about some ways we can avoid burnout-

• Ask others for help. Remember that you don’t have to do everything. It’s OK to ask friends and family to do some of your caretaking tasks.
• Get support. Talking about what you’re going through and getting support from family and friends or a support group helps you process your feelings and emotions. Holding everything in can make you depressed and contribute to feeling overwhelmed. Consider seeking professional counseling, if necessary.
• Be honest with yourself. Know what you can and can’t do. Do the tasks that you can, and delegate the rest to others. Say no when you think a task will be too stressful or you don’t have time to do it.
• Talk to other caregivers. This helps you get support as well as allowing you to give support and encouragement to others going through something similar.
• Take regular breaks. Breaks help relieve some of your stress and restore your energy. Use the time to do the things that relax you and improve your mood. Even 10-minute breaks can help.
• Attend social activities. Meeting with friends, continuing your hobbies, and doing things you enjoy are important to maintain your happiness and avoid isolating yourself. The activity should be something that gets you away from the daily routine and setting of caregiving.
• Pay attention to your feelings and needs. It’s easy to forget to take care of your needs when you’re a caretaker. It’s important to focus on of yourself regularly and take care of your needs.
• Take care of your health. Keep your regular doctor appointments, including for preventive care, take your medications, and see your doctor when you feel sick. If you aren’t healthy, you can’t take care of someone else.
• Eat a healthy diet. Eating nutritious meals keeps you healthy and improves energy and stamina. Avoid junk food, which can make you feel sluggish.
• Exercise. Exercising is a great way to relieve stress, increase energy, and take time for yourself. It can also improve depression.
• Maintain your sleep schedule. Getting enough rest is important for your well-being and to maintain your stamina.
• Take family leave. If you work, make use of family leave benefits available to you. Removing the stress of work can reduce your responsibilities and free up more time for yourself.

 
A medical and a mental health professional can help you with sleep issues and coping with emotional stress. You can’t always recognize caregiver burnout, but if you commit to practicing self-care you will be able to recognize when things are off and your stress levels are higher than normal.
Chances are your loved one is just as worried about you as you are about them and they would take care of you if they could- so do them a favor by taking care of yourself.
That’s all for today friends.  Until next time, may your coffee kick in before reality does...
-Katie
​
Listen to this podcast here: anchor.fm/katiebrown/episodes/CAREGIVERS-Reducing-Stress-and-Avoiding-Burnout-e4qh7d