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Why I became my best health care advocate…and why you should, too

Have you ever looked back to see how hard something seemed at the time? Ever wondered why you were so afraid?

When I was hospitalized in 2010 for lupus nephritis, I was really afraid that night. My lupus had been quiet for over 15 years, but now I worried I wasn’t going to make it through the night. I was so thankful that I had someone to advocate for me during those days; I know I didn’t have the courage.

But courage came quickly. After several more doctors’ visits after I was discharged, it quickly became clear that there were gaps in the system with the transition of information. It was not flowing smoothly from one physician or care system to another. I realized I had to take an active role in the management of my health care to ensure these gaps were filled. I had to be my own health care advocate if I wanted to manage my lupus ...

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Kimberly Dahline
Kimberly Dahline
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Thinking of summer in the middle of winter

Summer time is a great time for family fun and vacations. This past summer, we took our family – all 12 of us! – to Wisconsin Dells and had a great time enjoying the water rides under the bright blue, sunny sky.

In the midst of it all comes the question of “where do we park Grandma?” Everyone’s on the lookout for the most shade for me. They wheeled me up and down through the park, so I could watch the fun. I was lucky to get a Coolibar hat this past summer and have really been enjoying it. As much as I hate to cover up a good hair day, my hat has really been helpful.

I’m so grateful for my family, as they take such good care of me. It’s sometimes hard to accept their help, as I want to be able to do things like I used to. But, I appreciate everything they do and all ...

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Jan Jundt
Jan Jundt
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Hair Loss

For those of you who have lost your hair, it can be very devastating, to say the least. As a rule, we want to look good. Looking good makes us feel good.

When I lost my hair the first time, my husband and mom bought me a good wig. At first, I was very self-conscious about it. We didn’t say anything to the girls about my wig. They walked past me a few times and one of them stopped, backed up, looked at me and said, “Mom, you’re not bald anymore.”

My first outing with my wig was to see my grandma in the nursing home. There, we sat together holding hands and laughing about us both in our wheelchairs and wearing our wigs.

Can you relate to this topic of hair loss? How have you managed to cope with this change? What would you say as words of encouragement to others experiencing this to help alleviate their self-consciousness and anxiety?

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Jan Jundt
Jan Jundt
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Would a giant horn do the trick? A test of active listening

Most North Dakota and Minnesota people are very friendly. We pass by each other and usually greet each other with “Hi, how are you?”

I had just left our support group, where we were talking about whether or not people really want to know how you’re feeling. Do they really listen to our answer? Even when you say, “Not so great,” they reply, “Oh, but you look so good!” At times, I wish a giant horn would grow out of my forehead to let them know that I really don’t feel good.

Leaving our support group that day, thinking about this, I decided to do a little experiment of my own. I happened to run into a classmate I hadn’t seen for quite a while. I greeted her with “Hi, how are you?”

She said, “Great!” before asking me how I was doing.

I answered, “Not worth a darn.”

Much to my surprise, she said, “That’s good to hear!”

We went our separate ways. She really ...

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Jan Jundt
Jan Jundt
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Support through a support group

The first time I heard anything about a support group was when a woman came into my hospital room. She too had lupus and came to ask me to start a group. At the time, I couldn’t even get out of bed.

In the next couple of months, as we searched for information on lupus, we continued to hear the same words, “Would you start a support group?” With the help of the Lupus Foundation of Minnesota, Dave and I started a lupus support group in Bismarck, North Dakota, in April of 1990.

LFM offered training seminars, retreats and brochures on lupus to get us started. We found it wasn’t as hard as we thought. Overall, people just needed a place to share their feelings and talk to someone who understood what they were going through. We have learned so much just by sharing our stories.

The lady who first approached me in the hospital never did come to the support group. But, ...

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Jan Jundt
Jan Jundt
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Family support

How could I be so lucky to have such wonderful family support?! My family has given of themselves in so many ways, helping me with physical and personal needs. They do little things that they don’t think are much at all, but they are everything to me.

When I was so sick 25 years ago, my husband knew how much I needed to hold my girls. He picked each one up and put them in my hospital bed with me, despite all the tubes, wires and IVs. My recovery began!

Twenty plus years later, again very ill and in the hospital, they worked their magic yet once more. The girls curled up in bed with me and just held me. What better gift could a mother receive!

How has your family supported you? Leave your comments below.

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Jan Jundt
Jan Jundt
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The power of faith and prayer

I was very humbled to find out so many of our friends and family started prayer chains for me. Coast to coast, there were prayers for my health and my family.

I ran into a former coworker. We exchanged stories trying to get caught up. In the few minutes we were able to talk, I told her about my lupus and she told me for two years she had been praying for a lady with lupus. She did not know the lady’s name; just knew there was a need. As we talked, we pieced the puzzle together. That lady she had been praying for was me.

Don’t neglect the power and importance of faith in your wellness and healing.

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Jan Jundt
Jan Jundt
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Worrying. . .

You worry about your children from the minute they are born. But when you know they could also have lupus, you worry even more. Then you add grandchildren to the mix and the worry becomes enormous.

All the worrying in the world won’t change anything. So, we have tried, as a family, to be as educated as we can be about lupus. Watch for the tell-tale signs and behaviors of lupus, with the hopes of cutting it off at the pass, so to speak. Recognizing the signs enables us to seek help professionally when the need arises.

My family can read my face and body language and tell how I’m feeling, sometimes knowing before I do, that I have passed my limits.

Education and awareness of your disease is one of your greatest tools. There are numerous sources of education and information. Seek out information and educate yourself as much as you can. The Lupus Foundation of Minnesota, lupus support groups and your ...

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Jan Jundt
Jan Jundt
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Lupus affects the whole family

Our young family was hit hard and fast 25 years ago when I was first attacked by lupus. My family was forced to deal with the harsh reality of me being in ICU for a month and needing months of care afterwards. The daily care of my young family fell on others, while Dave spent night and day with me. We were blessed to have my parents close at hand. They stepped in to provide the care for the girls and helped me once I came home.

Many of you are well aware that when you have small children there is no time to be sick, but when it happens, you will find that children can handle and do more than we sometimes give them credit. When as a mom I should have been getting my three girls ready for school, they were helping me by putting my Ted socks on for me and getting me dressed. That was so ...

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Jan Jundt
Jan Jundt
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Introducing 2014 Lupus Ambassador Jan Jundt

Hi! My name is Jan Jundt. I’ve been asked to be the 2014 Lupus Ambassador. I was very honored and surprised that our three daughters nominated me. Thanks, girls!

I look forward to sharing “our” journey with you. From the beginning, we have always referred to my having lupus as we (our family) having lupus. As you can well imagine, how mom is feeling makes a difference in how and what we do. At first, I worried about spoiling family outings and plans, but with the help of my husband and girls we learned if plan A, B or C didn’t work, we’d go to Z if we had to.

I was diagnosed in December 1989, almost 25 years ago. I was 35 years old and suffered from pain I thought was caused from rheumatoid arthritis (RA). We were only too familiar with this disease on both sides of the family, so when I was having more and more trouble with my ...

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Jan Jundt
Jan Jundt
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