11 Ways to Care for Yourself With ITP—Mind, Body and Soul!
Who knows better than other folks living with ITP how to thrive? Here, some fun ideas and some sensible ones, too, that can nurture your mind, body and soul.
ITP and your mind
- Picture your platelets. “My doctor once told me that, because my spleen gobbles up my platelets, the platelets that are left are all young and fat and healthy,” says Cynthia Racette from Buffalo, who has been living with ITP for 12 years. “So I picture chubby little cartoon platelets with smiles on their faces. It makes me feel as if they’re still a positive force in my body, and they’re fighting for me.”
- Note your appointments in ink—not pencil. Are you dreading your next CBC? Afraid to see your hematologist again, worried you’ll hear “bad news?” Don’t put off your appointments! Even though you may be nervous, knowing where you stand right now is key to making the right treatment decisions.
- Learn a new language! “New ideas make your mind work differently, so you don’t get stuck in that place of worrying about what might happen with your ITP,” says Marietta, GA, resident Joan Coppolino. No ear for language? Pick any distraction that will engage your mind—and your focus! Learn how to use your fancy camera, enroll in a Tai Chi class or take up chess. “It gives you something to look forward to.”
- Look around at your hematologist’s office. Some of your doctor’s patients may be getting treatment for cancer. “It puts things in perspective,” says Dana Barnes, who’s been living with ITP for six years. “It makes me grateful for my blessings.”
ITP and your body
- Ask for large labels. Do you struggle to read the small print on prescription bottle labels? That could be dangerous, especially if you take medication for your ITP along with other drugs. Avoid problems: Ask your pharmacist to use large print or jumbo labels on your prescription bottles. Confused about what to take when? Have your pharmacist write out a plan for taking all your meds. (And learn if any of the other medicines you take interfere with your platelets.)
- Get tested. “Get tested now and get tested often,” advises Cynthia. “My platelets once took a nosedive and I ended up with a count of less than 5,000. If I hadn’t had it checked, I could have bled to death. But I did, and I got a treatment of gamma globulin and went on with my life.”
- Exercising? Don no-slip shoes. There’s no need to give up your Zumba class for fear of falling, says Joan, diagnosed in 2011. “Wear flexible shoes that give you stability during exercise,” she says. “If you bike-ride like I do, stay on the flat, hard-packed trails.” And wherever she goes, Joan wears an ID bracelet that indicates she has ITP. “It’s easy to spot. I don’t want anyone worrying about me!”
- In for an infusion? Take a deep breath. Ask the infusion nurse to let you know before she’s about to stick you. Then, take a nice deep breath and blow it out slowly. It releases tension in your arm, making it easier for the nurse to access your vein.
ITP and your soul
- Be interesting, funny, entertaining! “My ITP leaves me with a never-ending road map of nasty-looking black and blue marks and big red blotches of burst capillaries,” says Cynthia. “For quite a while, I was bothered by it. Then, I realized that people don’t care. Plus, if you’re an interesting person with a lot going on, people are looking at your face and don’t even notice your blotches.”
- Take a stress-relief walk. “One of the best things I do for myself is go on long walks at my favorite place—a pond where there are ducks and geese,” says Atlanta resident, Carol Leski. “It takes me to a peaceful place and helps with my stress. For me, it’s so important to spend time in nature.”
- Savor your blessings. “I have two teenagers,” says Carol, who was diagnosed with ITP in 2011. “All of the ‘little moments’ with the kids are the best! It helps to focus more on the good things in my life—and less on my ITP.”
Published October 2013