P.A.L. Series – Prepare: a couple pounds of cure
Benjamin Franklin once said, “An ounce of prevention is worth a pound of cure.” Wouldn’t you love a couple of pounds of cure? Ben was right when he said a little bit of work will do it. A little preparation can prevent a lot of headaches when it comes to your health. This means doing your homework before you get to the doctor’s office.…
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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 ...Continue Reading →
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. ...Continue Reading →
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, ...Continue Reading →
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?”…
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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 ...Continue Reading →
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 ...Continue Reading →
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 ...Continue Reading →
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, ...Continue Reading →
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 ...Continue Reading →