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The biggest decision I’ve made with lupus

The biggest decision I’ve made with lupus

Hi, my name is Kristie Bauer. I was diagnosed with lupus at the age of 17. I am now 26 and have been through so much. Sometimes I like to look at lupus as an adventure. It keeps life interesting. Usually when you least expect it.  Lupus has affected me in many ways including my heart, lungs, kidneys, joints, muscles and more.

Since being diagnosed with lupus, I have graduated high school, moved away to college, graduated college, got my first job, bought a house and got married. A lot of big life changes that didn’t come without lupus flare ups along the way. Our next big milestone? Baby!

I grew up always wanting kids. It never crossed my mind that I would consider NOT having kids someday. Shortly after getting married my husband, Pete, and I had that exact conversation. If there are times where I can’t take care of myself, how am I supposed to take care of a child? ...

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kristiebauer
Kristie Bauer
2

Support comes in all forms

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 make me feel inadequate. Now, lupus forces me to drop my pride and accept support. 

If I’m in a flare, my husband Patrick does mostly everything around the house including: meal preparation, cleaning, and caring for our dog, Cash. Patrick is my warrior, ready to fight with me on the front lines through the pain. My dad is also one of my strongest supporters because his help is readily available and always unconditional.

People often ask what they can do to support ...

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chriscronick
Chris Cronick
4

The good days

The good days

Have you ever heard the phrase “It’s a good day.” said by someone who has health issues? Many people with chronic illness know what good days and bad days are. For me, a good day with lupus means I can move relatively free without pain, I think clearly, and I can do many of the (sometimes simplest) things on my to-do list.

Sounds easy enough, right? Well, if you’ve read my previous blog post, “Flares and bad days,” you can see just how complex a bad day can get.

I’ve learned to soak up the good days like a sponge. I stay focused in the moment because I know my lupus may be quiet today, but there’s no guarantee it will be tomorrow. I find joy in spending time with my family or walking my dog around the lake. I’ve learned to appreciate the simplest things in life. I especially love the smell of fresh-cut grass in the summer, a charcoal ...

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chriscronick
Chris Cronick
0

From bed to bench and from bench to bed

From bed to bench and from bench to bed

The Lupus Foundation of Minnesota Fellowship was (no exaggeration) the most productive, meaningful, and inspirational experience I could have imagined my summer to be. Not only did I gain research experience and scientific communication skills, but I met peers, mentors, and patients who impacted my perspective on clinical and translational research.

Having the opportunity to interact with patients during my fellowship (with the courtesy of my PI, Dr. Erik Peterson) significantly and positively affected my fellowship experience. I am not at liberty to write about any specific patients, but I will say that every patient I met moved me. The clinic for Rheumatology and Autoimmune Diseases sees patients living with various diseases and conditions such as rheumatoid arthritis, osteoarthritis, colitis, gout, lupus, and many more patients suffering with complex and/or chronic conditions. The causes for most of these diseases are still unknown, and we have not found cures. There are treatments, but there is still a lot that needs ...

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ayamamoto
Ami Yamamoto
0

Flares and bad days

Flares and bad days

When you have lupus, you have periods of disease remission and flares. Remission may seem like the disease is gone, but the reality is it never goes away; it’s just quiet. A lupus flare is a period of heightened disease activity which for me, ranges from mild to moderate and to severe. I’ve had both remission and flares all in the same day. Lupus turns on me that fast. After being diagnosed, I’ve become very aware of how I am feeling and what my body is telling me. Many times I can tell when I’m about to get a flare, but there are those times it just sneaks up on me. This is why lupus is so unpredictable.

I can tell a flare is coming when I start to feel very lethargic, beyond the normal amount. This gets tricky because chronic fatigue is a big part of lupus. At this point, I consider this a mild flare and I will get ...

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chriscronick
Chris Cronick
0

Confirming my future direction

Confirming my future direction

Before the start of this fellowship, I was contemplating whether I wanted to go into medicine, research, or both. Upon talking to many mentors, I was leaning towards going into practicing medicine, but finding a way to also stay involved with research. However, although I have had a passion and interest in both for quite a while now, I wanted to experience more before I made the decision.

After the first several weeks of the fellowship under Dr. Peterson, I loved lab bench-work so much that I doubted my choice of being pre-med. It wasn’t that I loved medicine or the idea of helping patients any less; it was just that research was too much fun.

I could see myself doing this for the rest of my life. I know that research isn’t all wet lab and bench work. I know that there is a lot of writing grants and going to conferences and reviewing others’ work. It doesn’t matter. Research ...

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ayamamoto
Ami Yamamoto
1

Channeling My Passion

Channeling My Passion

I have had a passion for medicine and research since mid-high school. However, I was not sure about whether I would pursue one, the other, both, or the integration of the two as my future career.

At the start of my undergraduate career, I was set on trying to get into the M.D., Ph.D. program to integrate the two fields, as well as apply myself in both settings, as I always loved biology and medicine and had experience with clinical and translational research previously. However, when I started working in a microtubule lab at the beginning of my sophomore year, I fell in love again with research and leaned heavily towards going into research as a career with a Ph.D.
 
For the next year, I struggled to figure out what direction was best for me by gaining more experience and by talking to many people. This is part of the reason that I decided to apply for this fellowship. Not ...

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ayamamoto
Ami Yamamoto
0

Introducing My Lupus Research Project

Introducing My Lupus Research Project

My name is Ami Yamamoto, and I have the great opportunity of being one of the Lupus Foundation of Minnesota’s  Student Summer Fellows for 2013. This summer, I am studying under Erik Peterson, M.D., in the Department of Rheumatic and Autoimmune Diseases at the University of Minnesota–Twin Cities.

As I will write about in more detail in a later post, my project is to contribute to research on the gene PTPN22 which Dr. Peterson and his team thinks to be a “risk” gene for Systemic Lupus Erythematosus (SLE). The first step for the project is gathering approximately 150 SLE patient participants and genotyping their DNA (extracted from a small tube of blood they donated for the cause) to determine whether they have the “LypR” variant or the “LypW” variant. We hypothesize that patients with the “LypW” variant (who we call “carriers”) are at higher risk for SLE and that SLE patients with LypW variant PTPN22 have ...

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ayamamoto
Ami Yamamoto
2

My “New Normal”

My “New Normal”

As I’m thinking of ideas to blog about, it occurred to me to talk about some of the topics I find myself discussing with friends and family. Most people have heard of lupus but many don’t really know how life-altering it is. I sure didn’t.
 
When I was diagnosed nearly three years ago, I knew very little about lupus. I knew it’s an autoimmune disease meaning that my body is basically attacking itself. I knew of people who got really sick and I’d heard of the fatalities. Beyond that, I didn’t know much more, so I found myself entrenched in research to understand it.

I can recite a lot of facts and statistics, and while that’s good to know, people are curious about what it’s like having lupus on a day-to-day basis and how it impacts my life. My answer to that is: it impacts every single aspect of life – physical, emotional, spiritual, financial, social. Everything. Having lupus informs ...

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chriscronick
Chris Cronick
0

Introducing 2013 Lupus Ambassador Chris Cronick

Introducing 2013 Lupus Ambassador Chris Cronick

My name is Chris Cronick and I’m honored to have been chosen as the 2013 Lupus Ambassador for the Lupus Foundation of Minnesota (LFM). I’m 37 and I was diagnosed with lupus in 2010. Prior to my diagnosis, I was in and out of the hospital for six months. It was a very scary time, not knowing what was wrong. I was tested for everything, but eventually was diagnosed with lupus SLE.

I have found that many times those of us with lupus tend to have other autoimmune diseases and I am no exception. I also have had rheumatoid arthritis for nearly 15 years and I have celiac disease too, another autoimmune disease in which my body is allergic to wheat and gluten. I plan to delve further into my life-changing journey with lupus in subsequent blog posts.

Having lupus has given me many blessings and curses along the way. One positive result is a renewed respect for my health. ...

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chriscronick
Chris Cronick
0
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