When I was diagnosed with lupus, I declared, “I have lupus. I’m not crazy.” But now I’m not so sure. I think having lupus might be making me crazy. Bonkers. Uber Crazy! A combination of the unending and numerous doctor appointments, medications that always need refilling at times that never coordinate with fellow medications (there’s a pill conspiracy going on in my medicine cabinet), malaise, headaches and migraines, depression, mystery aches and pains, unending fatigue no matter how much sleep I get, are a recipe to make anyone a little nutty. On top of all that, when my doctors order medical tests, the results often fail to show anything conclusive as to what is “wrong” or going haywire in my body. (Pulling hair – frustration.)
I’m on a mission to un-crazy my life, including my routine(s), attitude, habits, mental health, and everything else. I want to share some lupus-life hacks that might alleviate some of your stressors, bringing ease and calmness into your daily life, improving your mental well-being and physical health, and hopefully giving you back some sanity.
On any given week, I have at least one (and sometimes up to three or four) medical appointments. It 
is a lot to manage and remember. (Oops, I should have included in my first paragraph that I have brain fog and it might be contributing to my craziness. I forgot to mention my brain fog on account of having brain fog.) Forget about remembering your appointments. I use a Google calendar to keep track of upcoming appointments.
Another note about brain fog, before I forget, write everything down. After my lupus diagnosis, I quickly realized that my once alert and sometimes sharp memory was diminishing, making way for all that fog to roll in. My early adaption to memory issues was to keeps lists and notes of things to remember. I don’t even try to remember anymore.
Soon after I was diagnosed with lupus, my list of medications grew quickly. Dealing with refills can be a daunting task. Fortunately there are some nifty tools to make this job manageable.
- If you take multiple meds, get a pill sorter. Once a week, dispense your pills for each day and you’re set for the week.
- Use an app to keep track of meds, refill schedules, etc.
- Use a mail order pharmacy to reduce trips to the pharmacy.
- Sign up for automatic refills through your pharmacy
- Use the company Pill Pack to fill your prescriptions. While this is a mail-order pharmacy, this company does something special. Pill Pack sorts and packages your medications into individual, daily dose packs organized by date and time.
- Ask your doctor to write your prescription(s) for a three month supply of the medication, instead of the standard one month. This will reduce how often you need to fill the prescription.
The pharmacy I use has a wonderful online feature for managing my prescriptions. Once logged into my account, I am able to see all of my medications and the dates when they are due to be refilled, plus I can request refills with only a couple of clicks. My pharmacy sends me text messages when refills are due and when my meds are ready to be picked up. I no longer have to carry a list of my medications. I can access my meds using the pharmacies’ app. Some pharmacies offer home delivery of medications via courier. Check with your pharmacist to see if this is an option.
Another lupus-life survival tool is using home delivery services. Quit getting in your car to run errands. Grocery shopping is an easy task done from home. For a small fee, you can have groceries delivered to
your door. My mom uses Peapod and loves it. She raves about the produce quality she gets through this service. She said they pick out better produce than she does. Plus the delivery person carries her groceries all the way into the house and into the kitchen. I live on the second floor of an apartment complex. Having someone else carry my groceries up the steps sounds heavenly. Sign me up! Another option for grocery shopping is using an app called Instacart. This app is a grocery courier service where you can get groceries delivered within an hour or two. Both options offer free delivery for your first order.
Other errands that can be accomplished without getting behind the wheel include dry-cleaning, and mobile pet grooming and veterinary services if you have pets. Avoid going to the post office and ship packages directly from home. Use the post office’s online services to pay for postage and print a shipping label from your own printer. Then schedule to have your packages picked up from home or work location. Look for other delivery services in your local area.
One thing that makes me borderline crazy is stress. Eliminating all 
stress is impossible, but you can reduce and manage it. Meditating daily, if only for five to ten minutes can bring a sense of calmness, centering and grounding you. When you are more relaxed, both physically and emotionally, you are in a much better place to think clearly and make decisions. There are a ton of meditation apps to choose from if you prefer a guided meditation.
Living with a chronic illness has forced me to prioritize life. Since I’m not able to do everything I want to because of my lupus limitations, I careful choose my activities and commitments. With severely limited energy I had to learn how to say, “no”. If you are newly diagnosed with lupus, I suggest you start practicing your “no’s”. This was (and still is) hard for me, but if I do too much, I will suffer the physical repercussions. In order to help prevent a stress-induced flare, I limit my crazy-inducing commitments.
Lupus forced me to learn how to let go of my perfectionist tendencies regarding cleaning the house, organization, and task accomplishment. Some days I commute from my bed to the couch, staying there all day until bedtime because this disease dictates how little I am able to do. Lupus has set limits for me, and while those limits vary each day, I’m learning how to be flexible. It’s a constant struggle, but adapting is crucial to not feeling crazy. If you have lupus, think of and implement some of your own lupus-life hacks to manage your life and disease. Most importantly, remember that you’re not crazy.
