For the Patient and for the Caregiver.
These are by no means medical recommendations. These are just things that have helped me in my journey. I have no data expect these are some things that have helped me feel better when done consistently. I use an a la carte prescription to be adjusted or supplemented based on what I feel I need at any given time. I do encourage people to cultivate their intuition about how they are feeling because that is the most important thing of all; that people feel good and feel happy.
Caregivers should also read these to get some of their own ideas on how to give a patient some space to heal. More about what caregivers can do below lists for patients.
To Feel Physically Better:
In recovery or if you are feeling lethargic, get a super greens powder to give your body the extra nutrients it needs to do maintenance as well as recovery.
Amp up your C, D, B vitamins (specifically b-12 as it is nerve function, gut health, and brain function.) It may be worth paying a naturopath or integrated medicine doctor to run a panel of all your nutrients for a few hundred dollars. Turns out after months of prednisone and a completely jacked menstrual cycle I was iron deficient and my even though I kept asking about my malaise, no doctor thought of checking that. A supplement and a few burgers later, I felt like a new person.
Take and epsom salt bath every night and drink as many fluids as possible. Epson pulls those toxins and bugs right out of your system.
Drink lots of lemon water and tea. Ginger is so good for the immune system and gut. If your stomach has any issues licorice tea is the best. It doesn’t take like anis, especially Egyptian licorice from Yogi, and it rebuilds the lining and muhcas in your gut.
Go get a massage at least once a week. This is not indulgent. This will release endorphins and hormones that are healing into your system. Also, for those who have ACE’s or trauma from abuse, this consistent therapeutic touch without expectation of anything in return is emotionally healing.
Try to get some of the morning low light sun even if you can sit in it or walk lightly in in it for 20 minutes. It helps your body the rest of the day with its natural energy cycles.
Sleep regularly. 9-10 hours a night.
Eat warm foods like soup, stews and curries. Cooked foods like this make it much easier for your body to absorb nutrients. A smoothie is actually hard for your stomach to absorb. Add a lot of garlic, turmeric, ginger and olive oil to any of your cooking.
Eat vegetables all the time and a large variety.
Get a hot water bottle with cover. This sounds silly, but it will change your life to sleep with this. It is great for any aches and pains or stomach issues, but it also is very comforting.
Try to do at least 5 minutes of light yoga in the AM and practice verbal gratitude while doing it. Sounds silly, but it will keep you present and your body will respond to positive praise. Love on that body.
Find a way to get some rapid movement. I like to put on my current favorite dance song in my headphones and have a five minute dance party.
If those medical bills seem unfair or questionable, they are. Push back and ask for things to be recoded. If you call three times and or find the right form, they will generally back down. The system is designed so that even the people working in it cannot navigate it. There is always a loophole and we need to stick it those few who intentionally screw the masses to keep their own pockets deep. Don’t just pay.
For the Head and the Heart:
I really recommend EMDR therapy, but with any type of therapy, you need a good therapist. Find any therapy that allows your brain to separate from he standard language it uses to process trauma. This will help move trauma along. I believe in things like meditation, hypnosis, non-traditional medicines, making art, etc.
For anyone with childhood trauma - Young Pueblo’s Clarity & Connection. I know he is all the buzz, but this book is really utilization for anyone working through trauma. You can open any page of the book to get a little reassurance.
Get massages. All these endorphins and hormones are therapeutic and healing. This is not indulgent. This is basic self care.
Get routines that nurture your inner child. Baths. Time to make arts and crafts. Eat ice cream. Put a picture of you up at a young age and verbally praise and tell that little you, that you got him/her.
Remove all toxic people. The criteria for people in your life are those who motivate and inspire you. You will not grieve these people. You will see they are just dead weight and by removing them, there is more space for love and kindness in your life.
Put your 3 overarching goals on your bathroom mirror. I like objectives like, be joyful, simplify, travel. This way you do not get bombarded with all the little steps along the way, you just subconsciously do them, and at one point you will look back and see how far you have come.
Learning tapping techniques for anytime you feel triggered or learn to submerge yourself in water or put a cold packer your eyes and hold your breath as long as you can. These are all methods of putting you back in your body and taking you out of fight or flight. Learn and practice methods that work for you.
Verbally praise yourself.
Know who your funny friends and call them regularly.
Use little tricks to release endorphins. Play your favorite songs. Light candles that you love the smell off. Eat something you adore. Buy yourself some pretty flowers from Trader Joe’s (they are inexpensive there.) Chat with people when you are out and about asking them how their day is and pay them a compliment.
Stretch, breath, do some simple yoga regularly even if it is just three minutes a day.
Start with small and short goals one at a time.
Tell yourself that you are doing a good job.
For the Caregiver: Most of us do not know what to do when someone is in crisis or in pain and even more so those in the United States and for those of privilege. While traveling in less developed places, I have observed that people with less monetarily know what to do when someone else needs help, because they have been there themselves. They spread what they have as far as it can go and demonstrate generosity that we all should learn from.
When someone else is having a hard time we fear that we will offend in some way if we interject because we ourselves fear appearing to be weak. We are all just soft pink animals that have to live in herds to survive, but like to pretend we don’t need anybody cause… that’s cool. We are actually here to take care of each other.
The best way you can support a patient is do anything for them that would give them capacity to heal because American culture does not value or support that space. We are expected to bounce back and just be productive. We need to cultivate healing and a culture that wants to heal.
Here are some things that people that have really helped me. Most the time, these little things made room so I could take a bath or a walk.
Running to the supermarket and sticking my fridge with healthy food.
A friend unloaded my dishwasher, wiped down the kitchen sink, and changed my bed sheets and it was the best.
One friend bought me a pair of slippers. As a patient, I have a lot of expenses and I feel things like slippers are indulgent (this is my own fucked up messaging of self value I still need to work on.) I wear these slippers for infusion days at the hospital and I feel more comforted and less alone.
When I was on prednisone for many months, a friend asked me for a list of emails of anyone who lived near me that liked to cook. She organized 12 meals in a month and asked a long with the meal for people to put a few spare fresh fruit or vegetables. I could taste the love in the food that people made for me and it was one of the most therapeutic and loving things I have experienced. People snuck in notes and little chocolates. I felt connected and cared for. And the one person who did not want to cook gave me a gift card for a delivery service. I had an awesome Indian dinner one day after getting home in bad weather from a day of infusion with almost a two hour drive each way.
Just ask if they need anything when you are already out doing a Target or supermarket run.
I had friends organize medical paperwork and bills. Dealing with all that bullshit after being in the hospital or clinics is re-traumatizing and can feel unsurmountable.
One friend bought me a covered hot water bottle for $10 on Amazon. Almost as good of a purchase as blow-up doll.
I had a lot of friends take me on walks. Take a patient outside and on a walk, even if it is short.
I have often felt overwhelmed when trying to seek out a diagnosis. People with good intentions suggest more treatments, practictioners, etc. If you have an idea, like a supplement or seeing a practitioner, do the leg work. Go buy it and deliver it or see if the clinic accepts the patient’s insurance. Even make an appointment.
I need to hear I am doing a good job. Being undiagnosed and trying so many things is not only defeating, it is so exhausting. People with good intentions want to heal you and so they share so many ideas. I have been sensitive to that in that it feels like people think I am not doing my best. If a patents seems defensive, please remember they may be in pain or discomfort, they are scared, overwhelmed and my feel broken. Being a patient is the toughest work and on top of it, most of us have to continue to work full time to pay for the part-time job we do not want. Just remind us that you see how hard we work.
Yes, I can still drive, but sometimes a ride to the doctor is what I need because my brain is processing a lot and thinking about parking is one more stressor.
Being from Minnesota, where reserved, but polite Scandinavians live, I have a lot of old friends who are uncomfortable talking about what this is like for me at all. They don’t ask and we don’t discuss the potential of me going blind. I have to remember it is not me, it is them not being ready to process. On the flip side, I deeply note who asks, “how are you felling?” Just ask and then just listen to the response. Just listen to the response and remember that you do not have to fix it. Ask even when, especially when, you know someone is feeling good. Celebrate that.
And here is my final recommendation. DO NOT EVER talk about or promise to show up in ways you cannot, do not have capacity for, or do not want to. It is completely understandable that people are at capacity in their own lives and cannot give more. However, the worst thing you can do for a patient is to overpromise and underdeliver. Isolated in the pandemic on insane amounts of Prednisone in a Minnesota winter, I was hanging on by a thread as my hair was falling out and I felt like a werewolf. The worst thing was when someone would say they would be coming to help and then not show up. Just be good on your word.
Again, this is not medical advice, but maybe there are some helpful things in these lists. Please feel free to leave other ideas or questions in comments.
