RE: Living With Chronic Pain And Navigating Every Day Life ...

I’m not sure if this thread has been closed due to inactivity.

I have multiple disabilities and receive SSDI. I plan to begin working part-time (ticket-to-work), while attending college likely full-time.

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Last week, I signed up for Ticket-to-Work through the Social Security Administration. My youngest son turns 18 this month, and my income will change. I need to at least work part-time. I am happy to report that my new HAE injection treatments seem to be working. My HAE attacks have slowed down a lot. I received hospital bills from my last few HAE attacks. Working will help me get them paid off.

I have an assigned vocational case manager. We had a phone conversation this week and discussed resumes. I have been dealing with a lot of anxiety over how to explain the gap in my employment history. My case manager explained that I should list volunteer work and explain during interviews that I took time off to raise a family. My kids are all grown, and I am returning to work. Being disabled is very hard, and I understand that it varies greatly from person to person, depending on the type of disability (disabilities) in addition to the severity.

I have a very close relationship with my youngest son, and that’s mainly because I started receiving SSDI when he was in fourth grade. He’s a senior in high school, and I still take him to school and pick him up. I have been able to attend all his school events, band concerts, band competitions, open house events, and parent-teacher conferences. I participated in school carnivals, bake sales, and helped chaperone events. I dropped him off and picked up him and his classmates.

I found a few articles that discuss returning to the workforce. I hope others find the articles helpful too.

•Stay-at-home-mom valuable transferable skills.

Just a moment...

•Finding a job/reentering the workforce after being a stay-at-home-mom.

Just a moment...

•Finding a job/reentering the workforce after a long absence.

Just a moment...

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“Tips from a rheumatologist for your journey with lupus
As a practicing rheumatologist, I have found that most people with lupus learn, over time, how to cope with the disease.

Family support helps a tremendous amount. A good doctor-patient relationship is also important. Friends can help with coping, as well.

There is often a period of sadness and grief when a person is sick, or immediately after an illness or diagnosis, but people with lupus gradually come to grips with that.

Other tips that may be helpful for your journey with lupus:

Focus on the future and what you need to do to get better.
Don’t look back at what might have caused your illness or ask, “Why me?”
Try to incorporate some level of exercise into your daily schedule.
Educate yourself about lupus and get involved in your own health care.
Stick to reliable sources of information on lupus. When it comes to reading about lupus in the library or on the Internet, be sure you are accessing reliable content. Read up-to-date books and visit trustworthy websites, such as this one, or the National Institutes of Health. Be cautious when reading blogs that relate personal stories, but not necessarily accurate medical information.

Embrace complementary strategies for managing pain. When coping with pain, visual imagery can be helpful; think of yourself watching the ocean or walking over a new layer of snow and try to relax your body. Distraction can help. Read, watch TV or a movie, pursue a hobby—anything that keeps your mind off your symptoms. Look for treatments, not cures.

Make the most of your medical appointments. When you have an appointment, write down what you want to discuss with your health care provider and prioritize it before you go so the most important issues are covered. Consider bringing someone along who can listen so that both of you have a good chance of understanding treatment suggestions. Don’t hesitate to ask questions if you don’t understand the advice. And don’t be afraid to call your physician if you have concerns, new symptoms, or any other problem.

Read: 6 keys to preparing for a medical appointment

If your symptoms worsen, talk to or visit your health care provider before changing your diet, medications, or over-the-counter supplements.

Try to talk about your illness. This is much better than internalizing your angst and worries. A psychologist or other professional counselor can help you talk about the effect the illness has on your career, family, and hopes and dreams.

Above all, realize you will get through this. With the support of your family and health professionals you are comfortable with, and your own commitment to the treatments prescribed, you can regain your life.”

Tips from a rheumatologist for your journey with lupus | Lupus Foundation of America

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“Important questions for your doctor when you're newly diagnosed
When you're newly diagnosed with lupus, you have a lot of questions. We created this guide to make sure you don't miss any critical information during those initial visits with your rheumatologist.

Once you get beyond the initial diagnosis, there are other important subjects to discuss with your care team: medications, lifestyle changes, diet and nutrition, or family planning.”

Important questions for your doctor when you're newly diagnosed | Lupus Foundation of America

“Learning to accept your lupus
A diagnosis of lupus remains with you for the rest of your life. And, a diagnosis of lupus also includes periods of feeling well mixed with periods of feeling ill. That is why learning to live with lupus involves making some changes -- physical, emotional, spiritual -- within your family, within your profession, within your social circle. In many cases, these changes will extend to how you define yourself.

But it is important to understand the significant difference between viewing yourself as a person with a chronic illness and viewing yourself as a chronically ill person. People who view themselves as chronically ill are allowing the disease and its limitations to take away a large part of their identity. People who view themselves as having a chronic illness are accepting the reality of lupus as one part of their identity.

You may find a source of strength and growth in the knowledge that you have a chronic illness but also a life beyond it. You may realize that living with your illness has made you more understanding of others whose lives are affected by sickness and pain. You may feel a greater appreciation for things you used to take for granted, such as the love and support of family, or hobbies, work, and activities that give you pleasure.

You may also find that your life and your identity are improved and enriched by sharing your experiences with others who have lupus, whether you volunteer with a local lupus support group or chapter, or help people with lupus in your community by listening or lending a hand.

You may even discover that sharing the knowledge of what to expect from a life with lupus, and what can be accomplished despite lupus, can be a powerful lesson for yourself as well as for others.”

Learning to accept your lupus | Lupus Foundation of America

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