The story continues: grasping the magnitude of my lupus

In the fall of 2009, my biopsies were non-conclusive. I had some type of muscle atrophy they could only treat with pain medications and steroids. I went to the Mayo Clinic and was diagnosed with a connective skin tissue disorder, which they believed was the root cause behind my hair was falling out and areas of skin blistering, so I was given topical creams. I was never given a firm diagnosis of lupus.

I began to seek alternative therapies. I visited ...

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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, ...

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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 ...

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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 ...

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The top five ways you can help as a caregiver

My husband and primary caregiver, Patrick, wants to get in on the blogging, so I’m turning this post over to him. Here it goes:

Hi all!

My name is Patrick Spott and I thank you for this opportunity to “speak” on the topic of “caregiving.” Some of you may know that my wife Chris was the 2013 Lupus Foundation of Minnesota (LFM) Ambassador. Our 14 years of marriage have been burdened not only with lupus, but rheumatoid arthritis, celiac disease and a ...

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Uniting for a common purpose

We recently finished the Lupus Walk for Hope and 5K in Plymouth on September 14, Rochester on September 28, and the last event in Duluth on October 5. Time has flown by, as it seems like it was just last week we were in Duluth. I’m grateful to have participated in all three Walk/5Ks and even more grateful my body decided to cooperate with me through the weather, travel, and excitement of it all.

As Ambassador, I’ve had the pleasure of ...

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Support comes in all forms

Lupus is a chronic disease which means it’s something that is life-long with no cure. I am doing well today, but that does not mean that’s true tomorrow. I knew I would be dealing with lupus for the rest of my life. Given that, I quickly realized I would have to rely on, and ask for support, from those around me. For someone who is fiercely independent and rather “Type A,” this is very humbling. Asking for help used to ...

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