Blog

The top five ways you can help as a caregiver

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 host of major surgeries including a heart valve replacement. I have been the chief caregiver for my wife during this time.

After hearing many stories from fellow caregivers and people living with chronic disease, I asked LFM if I could throw in my two cents on caregiving in this blog. My only hope is that I will be able to help at least one person benefit from my experiences and save them from making some of the mistakes I made. So, ...

Continue Reading →
chriscronick
Chris Cronick
0

My pregnancy first scare

My pregnancy first scare

Being pregnant adds a whole new meaning to a lupus scare. It’s not just you you’re looking after.

I woke up one morning and took my socks off. They weren’t very tight socks, but they had left big indents and my legs were very swollen. I had suspected a little swelling over the course of a few days, but didn’t think anything of it really.

But when I noticed it in the morning, it threw me off a little bit. With my past kidney involvement with lupus, I know that when my legs are swollen, it’s not normally in the morning. In the morning, your feet have been up all night, so not too swollen. So my concerns forced me to call my doctor, just to be safe.

I was expecting a response of “that’s pretty normal, just keep an eye on it.” The nurse called me back and asked several questions. One was asking if I had been getting headaches. Headaches are ...

Continue Reading →
kristiebauer
Kristie Bauer
0

What I was told about lupus and pregnancy

What I was told about lupus and pregnancy

My lupus was fairly stable for about a year and a half before I got pregnant, so I am able to see a specialty OB, (one level above a normal OB) but do not have to go to the maternal fetal medicine doctor (the highest specialty level) on a regular basis. In the University of Minnesota system, all lupus patients who are pregnant see the maternal fetal medicine doctor at least once during their pregnancy. I had my appointment at 19 weeks. This is the appointment I was probably most nervous about. It’s where they talk to you about all the risks and what could happen, what might happen, what they do if something does come up. They then develop a plan and work closely with the OB throughout the rest of the pregnancy. Here’s a summary of what they told me.

It is recommended to have your lupus under control for at least year before trying to conceive. They stressed ...

Continue Reading →
kristiebauer
Kristie Bauer
0

Uniting for a common purpose

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 meeting so many wonderful people and made some friends for life. I have never been a part of a fundraising event before, but God willing, I know I’ll have my team walking for years to come. My friends and family were amazed at the outpouring of love and support they experienced that day. I recall thinking how empowering it felt to be united by a common purpose: to raise awareness and funds for lupus research. It was such a powerful ...

Continue Reading →
chriscronick
Chris Cronick
2

Surviving the first trimester with lupus

Surviving the first trimester with lupus

I can imagine that the first trimester for every pregnant woman is nerve-racking. The first trimester with lupus is even more so. It’s nerve-racking, overwhelming, exciting and scary all at once. Not only do you have to worry about taking care of yourself AND a baby, you also have to worry about miscarriages and how your lupus is going to affect your pregnancy (and your baby).

With lupus I was at a higher risk of miscarriage. I have talked to a couple of lupus patients with kids and they both had at least one miscarriage. One of them had three. Knowing this, Pete and I prepared ourselves for a miscarriage. We expected it. I completely disconnected myself with the situation so I wouldn’t get too excited or attached. Every time I didn’t have a doctor’s appointment for a few weeks, the week before I was extremely nervous. The minute it took to find the heartbeat when I wasn’t that far long ...

Continue Reading →
kristiebauer
Kristie Bauer
0

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? ...

Continue Reading →
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 ...

Continue Reading →
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 ...

Continue Reading →
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 ...

Continue Reading →
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 ...

Continue Reading →
chriscronick
Chris Cronick
0
Page 1 of 3 123

# #