Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

Lupus: Coping Skill # 2

posted by mpratt

Maureen Pratt Author PicWhen I was diagnosed with lupus, I found it extremely helpful to immediately organize all the information, appointments, and other things pertaining to life with the diagnosis. That, then, was my “Coping Skill # 1.”

Next, I set about finding out as much as I could about lupus, and especially how it was affecting me. Thus, Coping Skill # 2 was: Education

I was diagnosed before the Internet was as powerful as it is today. So, I turned to books (especially “The Lupus Book,” written by Daniel J. Wallace, MD) and information provided by my physicians and organizations such as the Lupus Foundation of America (www.lupus.org). I also found my pharmacist extremely helpful with explaining the various medications I had to take.

Now, of course, there are myriad websites, blogs, and other venues online where lupus patients, medical professionals, and others perhaps not as well-equipped or knowlegable, meet and communicate day and night. Some of the information given is good, some of it is not, and it’s a huge challenge all by itself to separate the proverbial wheat from chaffe.

For me, it goes back to my original sources: My doctors, credible lupus-related organizations, and my pharmacist. Also, for “how to live with it” kinds of advice, I’ve also found the wisdom gained by older lupies to be very valuable. I try to encourage other lupies to get their information from these sources, too, because inevitably, each person with lupus will encounter completely wrong information and, sometimes, very persuasive (read: pushy)people who insist they know better than any “credible” source.

Even now, I get unsolicited advice from people who insist that “there’s a cure your doctor doesn’t want you to know about,” or “there’s a country where they cure lupus” – both statements are incorrect.  Some people say “there’s a lupus diet” (there isn’t), or “you need to boost your immune system” (bad idea because in lupus, the immune system is already boosted). And, I’ve also had people tell me, “you’re not cured because you’re not faithful enough to God” (hugely wrong-headed and completely opposite the point of living with a chronic illness).

For all of those statements, and for all the information I need to know, I go back to my credible, up-to-date sources. If knowledge is power, then the right knowledge is even more so!

Blessings for the day,

Maureen

Chronic Illness and Pain: Are You Prepared?

posted by mpratt
Image courtesy of nuchylee/FreeDigitalPhotos.net

Image courtesy of nuchylee/FreeDigitalPhotos.net

I’m behind on my blog postings, again! Not because I didn’t want to put fingers to keyboard. Oh, no. Yesterday, the power in my neighborhood went out. Four times! My exercise consisted of walking around to reset my clocks – four times! And, I had to recreate work that I’d been typing into my computer – four times!

Four-tunately (sorry for the pun), I’m a native Midwesterner whose habit of being prepared for the unexpected weather- or other-events was borne of experience with tornadoes and other things that could truly upend power and other utilities we depend on. So, yesterday, although most of my day was one of fits and starts and stops, I did have ample batteries to power my portable radio and flashlights, a telephone that worked, and the foresight to plan for meals that didn’t require a working stove or oven.

For most people, power outages are inconveniences and nothing more. But for we who live with chronic pain and illness, they can be more than just an “oops” during the day or night. Which is what has led me to write this blog – a gentle reminder, of course – to ask, “Are you prepared?”

If you take medications, do you have extra, in case there is a natural disaster and you cannot get to a pharmacy for refills for awhile?

If your meds require refrigeration, or you need medical equipment that relies on electricity, do you have a back-up in case the power goes out for a long time?

If you live in a building with an elevator and/or electrically-operated door to the parking garage, do you have an “out” if these aren’t working (or someone who can help you)?

Do you have the “usual” emergency supplies – batteries, food, water, thick-soled shoes, etc. – and are these reachable in case you need them?

Do you have a way to communicate if power lines are down? Do your neighbors (or apartment building manager) know that you might need their assistance if an earthquake or flood occurs?

Are you in the best shape you possibly can be, in case there is no one who can assist you if a weather emergency occurs?

Have you thought through the scenarios that might pertain to severe weather or other conditions where you live, and have you reached a strong, resilient spiritual place as far as your ability to meet these challenges if they occur?

These are just some of the questions you might ask now, when the weather is cooperative and there is no emergency. I know, it’s easy to push off planning when life is just humming along. But it’s exactly at times like these when we need to prepare for times like those.

Now, I’m going to “file” this before the power goes off…or not…again. Yup. This time, I’m prepared!

Blessings for the day,

Maureen

Lupus: Getting Involved in Awareness Month

posted by mpratt

Maureen Pratt Author PicBefore this Lupus Awareness Month gets too far underway, I wanted to highlight a few activities that will be taking place to educate, encourage, and raise funds for research. I realize that budgets can get stretched and energy sapped easily by too much involvement in  volunteerism for any cause, but given the numbers (at least 1.5 million people have lupus in the United States) and need (we’ve only had one new drug to treat this chronic, very serious illness in the past 50+ years), for more of a public face on lupus, we lupies hope that, at least, more people will be aware of what lupus is and how it affects the lives of those who have it and those who care about lupies.

Among the activities this month, the Lupus Foundation of America (www.lupus.org) will sponsor several walks in cities both large and small in the United States (you can go to their website for more information). LFA also has a Washington, D.C., advocacy day coming up in June, as well as ongoing support groups and other events throughout the year.

The Alliance for Lupus Research (www.lupusresearch.org) will also sponsor “real” walks, as well as a “virtual walk” (a nice accommodation for those of us with extreme sun-sensitivity). Their website also has good information on the disease and the state of current research, so we lupies can be well-equipped to talk with people about these.

The Lupus Research Institute (www.lupusresearchinstitute.org) has information about their events, as well as the research funding they give. There’s a link on their website to clinical trials, too, so that lupies can potentially be involved in the development of new treatments.

Often, when I speak with  newly diagnosed people with lupus, I hear them express a need to get involved in the cause. Rather than “reinventing the wheel,” these motivated lupies and others can find very worthy, worthwhile activities with organizations that already have a track record of education, advocacy, and research support – and become part of the larger community of lupies and “caring others” who really want to make a difference.

Blessings for the day,

Maureen

Lupus Coping Skill: Number 1

posted by mpratt

Maureen Pratt Author PicWhen you are diagnosed with lupus, you have to absorb a lot of information in a brief period of time. Lupus is a very complex disease; even if your case is mild and you do not have to take any medication, there is still a lot to learn about things you can do to stay as healthy as possible. And, with lupus brain fog, if you have it, and other responsibilities of life, it is very easy to quickly feel overloaded and to forget important health-related things.

Early on, I tried to become and stay organized. Work with your doctor to understand exactly what your particular case of lupus means and what you have to do to help your health. Keep a list hand of your doctors’ phone numbers, as well as your pharmacist and loved ones who can help you. Keep copies of all of your lab tests and other records. Maintain a symptoms journal, so you can track how you are doing, how you react to medication, and how your doctors’ appointments go. Take lots of time to pray, reflect, and have quiet that can enable you to ease pressure on your spirit and thus help you keep foremost what is most important.

With lupus, you often feel as if you’ve lost control over your life. By staying organized on paper and in spirit, you can better equip yourself to feel that you have some control, and that control will help you cope.

Blessings for the day,

Maureen

 

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