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Living with Lupus

Home Medical Devices, Independence, and Lupus

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Equipping yourself with the right tools can help you live more independently and happily at home.

The right tool  makes all the difference. The adage holds for healthcare as well with more equipment being available for use at home than ever before.

According to experts, more and more people are purchasing medical equipment for personal use at home. A medical device is defined as “Any device intended to be used for medical purposes.” A medical device that is designed for use in a patient’s home, not a hospital setting, is a “home medical device.”

Although you may need a prescription in order to get health insurance to cover the costs, you can shop for and buy these items yourself. These devices are highly regulated and generally safe for use – they have to be, in order to be marketed to the public.

There is a wide range of medical equipment available, so what should you be looking into?

Note: Anything linked here is just for example purposes, not an endorsement.

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Walking Aids

Lupus pain and fatigue can make it difficult to get around safely, but you do have to get around and move – both for the exercise and for normal life activities. Walkers, canes, crutches, and rollers can be essential for helping manage mobility. They can also help you avoid falls. Staircase lifts can also be useful for managing staircases.

While this equipment is very visible, it is also easy to use, and easy to take care of.

 

Screen Readers

Screen readers are useful pieces of hardware or software that many people don’t know about. As the name states, screen readers read text on the screen out loud for you. Some screen readers can even read the metadata of a site, including any description built into the images. They are very handy for people who are visually impaired. Also, they can be useful for people who find reading fatiguing or cannot look at their screens for long.

Less seriously, a screen reader can also be useful for people who simply absorb information better through hearing, rather than sight.

There are hundreds of screen readers available for many different operating systems, and prices range from free to expensive, depending on the version. Which one should you get?

When looking for screen readers, see if your insurance will cover it. Your operating system, the applications you want to use it for, any other displays that you use (such as a braille display), or how comfortable you are with the software commands are much more important. Ask your fellow Lupus Warriors in forums like our app here, and get some advice on what might be the right screen reader for you. There is no substitute for the experiences of others!

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Bathroom and Stability Aids

Keeping clean and handling basic needs is essential for people with lupus. But, pain can interfere and make even daily hygiene a challenge.

Handles such as bars and poles can help you get in the right positions, and adjustable toilet seats can help with comfort and safety. Shower chairs and transfer benches can help you use less energy in the shower, clean lower areas of the body without as much movement, and protect you from a fall. Such things can both make bathroom hygiene activities easier and safer.

 

Respiratory Equipment

Lupus can come with respiratory (lung and upper airway) issues, and those don’t stop when you are home. Various respiratory medical equipment, such as nebulizers, oxygen concentrators, pulse oximeters, and others can help you breathe a little easier at home.

 

IV Poles

IV poles, including IV poles with wheels and even privacy screens, can help decrease dependence on the hospital setting. It can also make taking IV medications a lot less stressful when you do it in the comfort of your own home. Though, the administration of these medications will still be completed by someone trained in providing medical care.

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How Does Medical Equipment Effect Your Quality of Life?

Home medical equipment can really help people with lupus take control of their care, reducing stress and improving quality of life. Not only do you have better access to some of the things that you need for your medical care, but your daily life can be made much less difficult. Improved access and comfort is very good for people with lupus, and the increase in independence can do wonders for your mental health. It also reduces your risk of exposure to potential hospital-transmitted diseases, and requires fewer scheduling issues to manage.

You should discuss with your medical team whether you can move some parts of your care to your own home, and what you need to get the job done.

 

How to Get Medical Equipment for Lupus?

You can buy some medical equipment on your own by ordering it on websites, but it is a good idea to talk to your healthcare providers first. They will give you a good idea of what types of items you will need, and, of course, how to use it. They can also recommend a good equipment provider. However, getting recommendations in writing from your healthcare provider also lets you potentially get some or all of the costs paid for by your health insurance.

Read more here about how to help afford expensive medications and equipment.

Living With Medical Equipment – Tips and Tricks

Having medical equipment in the home takes up space and can be a painful reminder of your illness. You may feel embarrassed to have such things, or to be seen walking around with assistance. It’s all right to feel this way and perfectly understandable – but here are some tips and tricks to lightening the mood!

 

Remember That It Helps

Medical equipment is helping you be you, and be comfortable being you. They are tools like any other, and we humans are tool-users. There is no shame in using what tools you have available to do better and feel better!

 

Decorate the Equipment and Make It Yours

Medical equipment looks bulky, plastic, and sterile – but it doesn’t have to! Make it personal! Stickers, paint, streamers, cloth coverings – do what makes you feel happy. As long as the decoration doesn’t interfere with the function of the medical equipment, you should feel free to make it feel like a real part of your home.

 

Share Experiences With Others

The internet makes it easier than ever to connect with other people who truly understand the challenges of life with lupus. Not only do you get good company and solidarity, you also get advice on how best to use home medical equipment. This lets you get the most out of it or make it comfortable for you.

Other apps include electronic notetakers, which can help you keep track of important information, mobile apps that link you to assistive technology, and many other useful items that can help you increase independence.

In all, though, you should do whatever you have to do in order to adapt your life to your needs and make things easier.

Comments (1)

One thought on “Home Medical Devices, Independence, and Lupus

  1. One fairly inexpensive medical device I have is a pulse oxymeter, a little gadget that clips on your finger and measures your pulse and your blood oxygen level. My husband and I got this at the same time as our blood pressure cuff and thermometer. It has come in handy during the pandemic, of all things. I get to feeling bad, kind of breathless, wonder if I’m coming down with COVID-19. Rather than stew about it, I measure my blood oxygen. Aha, still 99! Nah, I’m fine, I’m just having an anxiety attack. So rather than call an ambulance, I put on the meditation music and practice deep breathing. Oxymeters are worthwhile!

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