Help Raise Lupus Awareness #lupusis

Awareness – it’s one of the pillars of the Lupus Foundation of Minnesota’s (LFM) mission. They recently kicked off a campaign that is strictly about raising awareness. The campaign is to gain awareness around lupus and how people view lupus.

It’s simple. Here’s how it works:

  1. Download the “Lupus Is” PDF sheet. In one word, or a short phrase, tell us what lupus is to you.
  2. Snap a photo with your sign (and/or just of your sign if you don’t want to be that exposed) and post it to social media, using the hashtag #lupusis and/or tagging the Lupus Foundation of Minnesota on Facebook, Twitter, Instagram, Pinterest and anywhere else. Or simply email it to [email protected].
  3. Feel good that you did your part to help spread awareness.

Get creative. Submit a couple posts. Decorate your sign. Make your own sign. Get a bunch of friends together and make a video.

The Lupus Foundation of MN will highlight submissions on public media throughout the campaign and compile them, producing a video collection to premier for Lupus Awareness Month May 2015 – all in an effort to educate the world on what lupus is, why it’s important to support Lupus and how it personally impacts YOU! Your sign and/or you may end up in future LFM marketing materials, on the news, in the newspaper or other places to help tell the world about lupus.

Submissions will be collected through the end of the year. Make sure your images are crisp and clear to better ensure their use in the final, video product.

Help generate awareness. We can’t do it without you. Check back often to check out some of the images in our Facebook album and Twitter feed.

 Here’s mine:

#lupusis what makes me both weak and strong

Lupus is what makes me both WEAK and STRONG at the same time. #lupusis

Kristie’s Krews 10th Annual Lupus Walk for Hope

This year marks a very special year for me at the Lupus walk. Not only is this Kristie’s Krews 10th year walking, I will also be walking with my son. Saying that brings me so much joy. We were not sure if I was going to be able to have kids.

Deciding to have a baby was the biggest decision I have ever made with lupus. There were a lot of fears involved, but in the end, it was worth it. I had a lot of doctor’s appointments along the way. There were a lot of things they were watching with my health and the baby’s health. In the end, my pregnancy probably couldn’t have gone any better. No major flare-ups. No complications. No inducing. He is a happy, healthy, baby boy.

Some of my fears were around the stress my body would go under during pregnancy and the months following birth and the increased risk in a flare-up. During a flare-up, it would make it difficult to care for a baby, as I have a hard time caring for myself. In the end, I was looking at it the wrong way. Before Kevin, I would bring my work home with me (mentally). A stressful day at work would continue at home. Now if I have a stressful day at work, I come home and forget all about it the moment I see his sweet smiling face. I really feel like he has reduced my stress. And as many of you know, stress and lupus do not blend.

During my pregnancy, I wrote blogs for the Lupus Foundation of MN. If you’d like to read my story, you can here: http://www.lupusmn.org/tag/lupus-and-pregnancy/

I also shared my story with KFAN radio during Cory Cove’s 2014 Sludeathon. You can listen to that audio on the Lupus Foundation of MN’s website: http://www.lupusmn.org/about-lupus/lupus-stories/

My lupus has stayed fairly mellow with the pregnancy and after. I still have bad days. I always do. I have a couple labs that are a little off but I always seem to have a couple of those. My eyes are also inflamed right now and I am in the middle of getting that under control. There are several options, so it shouldn’t be an issue.

Thank you for continuing to support me over the past 9 years. I cannot tell you how much it means to me. My way of fighting back is raising money so future generations don’t have to go through what I’ve had to. The money raised for the walk stays local providing hope and helping those who lives are touched by lupus right here, right now.

If you want to donate towards Kristie’s Krew’s team fundraising goal, go to our team page click on the Sponsor our Team” on the right.

If you want to join Kristie’s Krew and walk with us on Saturday, September 13, click the “Join our Team” on the right.

Thanks so much for your support!

Celebrating my birthday with some unexpected and unexplained surprises

Just before Christmas was my 27th birthday. I’m at an age now where birthdays are not that important to me. Turning 27 is not a special age. But for some reason, my 27th birthday did not want to go on unnoticed.

The night before my birthday I was at my mom’s, celebrating not just mine, but my nephew Hunter’s birthday, as his is three days before mine. As soon as I got there, I started getting horrible cramps and didn’t feel good. I tried to suck it up and go to the table and eat. I’m so used to sucking up pain and moving on with lupus anyway. I ended up leaving and going into the bathroom halfway through dinner so I could curl up a little without making a scene. I finally just told everyone that I needed to lie down. I had horrible cramping on my right side where it hurt to even move. I got up long enough to help Hunter blow out candles and went straight back to the couch. Even sitting up on the couch to eat cake was much more of a task than it should be. I ended up leaving early so I could go home and go to bed. Even rolling from my side to my back caused a lot of pain. I slept some that night but woke up a lot.

The next morning the pain had faded. Normally, I would just move on because with lupus I get all kinds of random pains. Now that I’m pregnant, I wanted to make sure everything was ok, so I called the nurse line. The nurse didn’t seem too concerned and almost talked me into not going in, but she said that if I was concerned enough to call, it might not be a bad idea to come in. So I made an appointment for later that morning with my doctor.

My doctor did all sorts of tests. She did some preterm labor tests, blood work, and checked my urine. The baby was still moving a lot and the heartbeat was strong. Then I went back to work. I got a call about 2:30 p.m. from my actual doctor, which is rare. Normally I get a message through my online chart. If there’s something they want to talk about, it’s normally my nurse, not my doctor. She said that my preterm labor tests all came back negative. Phew.

But my white blood count was high enough where they were concerned about an infection and with the pain that I was describing, she was concerned it might be my appendix. She wanted me to come back and go into the ER for more tests and possibly a MRI.

I went in, got hooked up to IVs, talked to the doctor and waited to get an MRI. They normally do CT scans because they are quicker, but because I am pregnant, they chose to do an MRI. The doctor said that they were going to look at my whole abdominal area to check for any kind of infection. I was so thirsty at this point and they wouldn’t let me have any water because if they had to bring me into surgery they would want my belly to be empty.

After a lot of waiting, the doctor came in and said that they didn’t get a clear shot of my appendix. He did say that normally if the appendix is inflamed it will normally blur the area around it in the photo and they didn’t see that. Because of that, they didn’t think I needed immediate attention. He made me agree to follow up with my doctor the next day even if I was feeling better. I was also told to watch my temp and to come back in immediately if I got nauseous and threw up at all.

I went in the next day and felt a lot better. She said if it was my appendix, I would be a lot sicker. She said we might never know what caused it. It could have been a short viral infection or it could have been a small kidney stone that passed on its own. It’s hard to say. It’s hard to say if this was lupus related. My guess would be yes because my weakened immune system puts me at a higher risk for infection. But you never know.

It’s another case for always following your gut instinct. It’s you who knows your body better than anyone and if something doesn’t seem right, I recommend going in. It’s better to look a little paranoid than to ignore something that could be seriously wrong.

Everything with baby and I turned out fine in the end. Actually, the baby seemed unaffected by everything. For someone who normally doesn’t do much to celebrate my birthday, this year I had a very eventful birthday celebration!

The biggest decision I’ve made with lupus

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? The thought is beyond scary for me. I am a very independent and don’t like asking for help much. I couldn’t imagine not being able to change my baby’s diaper or get up with it in the middle of the night. I’m the type of person who would feel like I was failing my baby if that were to happen.

Well, things change and after many discussions and almost 2 years of marriage, I am currently 21 weeks pregnant! I haven’t found much online about pregnancy stories with lupus so I am going to be sharing my story throughout the rest of my pregnancy. I believe it’s important for people know that if you take care of yourself and keep up with your doctors, you are able to do things that you at one point weren’t sure you could. Life with lupus sucks, but you can still live a somewhat normal life.

So, what changed my mind? Several things. First off, I have always had an issue with people helping me, even not being pregnant or having a baby. I really just need to get over that and realize that people want to help and that they don’t see me as a burden. I have the best support of my family and friends. Pete is amazing and has always been so helpful. I have gotten a lot better with letting him help (not as much with others).

I also changed my doctor to a rheumatologist that specializes in lupus and pregnancies. I sat down and talked to her about what would have to happen if we did want kids in another year or so. I was planning ahead because I know how hard it can be to get off certain medicines and can take a while to get things under control once you do. She told me that my labs look good and I was doing well (I have been really lucky the last couple of years to be doing fairly well) that she would recommend having a baby now. That completely caught us off guard. She continued and said she would give me the ok to now but she couldn’t promise me that she’d be able to say the same in another year. Anyone who has lupus knows how quickly things can change.

This is not the first time I have had my doctor tell me that it would be a good time to have a baby. The first time I was 21 or 22 and was still in college. I basically laughed in her face when she told me that. If I would have been told that I couldn’t have kids a couple years after that, we would have been ok with it (I say we because Pete and I have been together 9 years this February). But, if we were to be told in a year that I shouldn’t have kids, we would regret it.

So far everything is going well. I have several doctors looking after me and have lots of doctor’s appointments but I know I am in good hands. I have never worried or been so nervous in my life. People say that comes with being a parent and never goes away! It starts…

Reasons why I love Fall

FallJeans and Sweatshirt Weather

I love going out in jeans and a sweatshirt and being comfortable. Especially sitting around a fire at night!

SCARFS

I love scarfs. I wear very plain clothing so adding a scarf is always fun!

Lupus Walk

The Lupus walk is tomorrow, it’s always so great to get a team together and raise money for a good cause.

Leaf for Lupus

My annual fundraiser, Leaf for Lupus is always mid October. It’s so much fun and raises more money for the Lupus Foundation of Minnesota. It’s always amazing to see how everything comes together and supports me.

Pumpkins

I love pumpkin flavor things including bread, hot chocolate, coffee, etc.

Having the windows open

Being able to have the windows open and even get a little chilly at night so I have to cuddle under all my covers!

Colors

I love the leaves changing colors. It’s so pretty.

 Fishing

I love fishing in the fall because you don’t have to worry about being overheated and it’s much better than winter when you have to worry about your lines freezing. :)

Mosquito’s go away

I love once we get our first frost at night and it kills the mosquito’s. They love me. The love is not returned.

Fall is my favorite season. Those are only a few reasons why.

Happy Fall everyone!

 (p.s. I know it’s not technically fall quite yet, but close enough!)

8 Tips for living a better life with lupus

Disclaimer: I am by no means a doctor and have not done any studies. This is just from my experience over the past 9 years and articles I have read.

Reduce your stress

This might be the most important advice I could give to anyone living with any kind of health condition. If I have a very busy and stressful day at work, I notice it within hours.  Take some time to yourself and make sure you set aside time to relax. I often remind myself that whatever I’m stressing about is not a big deal in the whole scheme of things. Pete is also good at bringing me back to reality when I am stressing over silly things. Another thing to remember is that good stress is still stress. There was a period of time where I graduated from college, moved home, got a job all within a few months. It was all very exciting and all good stress, but your body sees it as stress regardless if it’s good or bad.

Get your sleep

This is also very important. For me, sleep is the best medicine. If I don’t get enough sleep, I struggle the next day.  I often joke that if I go to bed late, I get a hangover without ever drinking a sip of alcohol. Now that takes talent!

Exercise

I know this one can be very difficult at times for lupus patients. I go through bouts when I can barely get out of bed. I’m not suggesting you exercise during those times, but when you can, do it. Last year I had a very good year and I found that exercising really helped. It gave me energy and built up my muscle strength that I had lost from my flare up and from taking more prednisone than I care to in a lifetime. I believe that if you strengthening your muscles surrounding your joints it helps support them better. For me, joint pain is what I feel the most.

Eat a healthy diet

Obviously this one has to be in there. It’s a given. Do what you can. There are also anti-inflammatory diets that can be tried. I have also been told alfalfa sprouts are not good for Lupus patients along with anything that boosts your immune system (like garlic). Lupus patients already have an over active immune system so you don’t want anything to make it even more active.

Be Careful in the Sun

This one is very difficult for me. I fish, I hunt and just like being outside. Although my doctor would love it if I just stay out of the sun completely, I just can’t. I have some summers that are worse than others. My compromise is using a lot of sunscreen with a higher amount of SPF. If that isn’t sufficient enough, I will pull out my sun clothing. Plus, I need my vitamin D, right?

Vitamin D

Speaking of vitamin D, make sure your levels get checked. Living in MN, I’m already at a risk of having low levels, but getting your D levels where they need to be does really help your energy levels. I believe I even read an article somewhere that decreased vitamin D levels was connected to an increase in Lupus symptoms. So just get it checked! They already take a ton of your blood, why not a little more?

Watch your Alcohol

This is different for every situation but I found that when I drink alcohol, it makes me sore and achy. I choose feeling better over drinking. You also need be aware of what medicine you’re taking. I was on methotrexate for a while, which you can’t drink at all on. Lupus can also attack your liver. In that case, you’d want to drink with caution and talk with your doctor.

Have a Support System

This is also very important. I don’t know where I would be without my friends and family who constantly support me. If you don’t have the support of friends and/or family, find other means. There are plenty of forums and support groups out there. The Lupus Foundation of MN has tons of meetings. If you’re not in MN, search for your local chapter. It can be hard because with lupus, a lot of times you don’t look sick so it’s hard for others to understand what you’re going through. Let people help you if you need it.

Overall, just take care of yourself and try to stay as healthy as possible. I know that’s everyone’s goal, healthy or not, but it’s always good to reiterate. Learn your body’s signs to slow down and listen to it. Learning and listening to your body are 2 different things. Trust me, I know. I may know that my body is not happy and it’s telling me to slow down and can still ignore it. Now if I only followed my own advise all of the time… You have to break the rules sometimes though, right?

Vitamin D deficiency

Let’s face it, living in Minnesota, it’s really common to get a  lack of vitamin D. Since half the year is cold and we don’t go outside much, we don’t get much vitamin D. We sometimes forget what that yellow ball in the sky looks like. A lot of Minnesotans are vitamin D deficient.

A couple of years ago when my lupus was flaring they checked my vitamin D. It was extremely low. I believe it was 12 (and it’s supposed to be over 30). I had to go on a high dose prescription and ever since I have taken 2,000 IU daily to keep it up. It has been fine ever since.

They checked it in January this year and it was normal. They checked it last week and it is low again. Not as low, but still low. My doctor asked if I had been in the sun less. Uh, no, not since January. It’s summer. And at the appointment my face was peeling. I have been in the sun a lot in the last couple of months actually.

Explain that one… I always knew I was unique! :)

Reasons I hate Lupus

Image

Lupus ecard

A few reasons I hate Lupus

  • Valleyfair is too much for me now.
  • We had a team building scavenger hunt at work yesterday around St. Paul and today I am feeling it.
  • I want to go to the State fair but not sure if I should because of all the walking and uneven grounds to walk on.
  • I get hangovers without ever drinking a sip of alcohol. Last Saturday I took Emily (my 10-year old niece) to her first concert and we didn’t get home until after 12:30. On the drive home I was exhausted and sore to the point where I felt sick. The next day was a recovery day. It was worth every minute to see her face and how excited she was.
  • All the doctor appointments which includes many tubes of blood and peeing in a cup. It never fails that I have to go to the bathroom right before I leave for my appointment but have to hold it because I know I’ll need it for my labs.
  • That garlic is not good for me. I love garlic! Apparently garlic boosts your immune system and that’s not good for me. My immune system is already over active, fighting cells it doesn’t need to, that boosting it would be bad. I can give up a lot of things for my lupus, but garlic is not one of them.
  • Prednisone. Need I say more? Thankfully I haven’t been on that for a couple years now.

That’s just a short list that is on my mind right now. I could write for hours on this list.

2013 Lupus Walk for Hope: Kristie’s Krew

Kristie’s Krew walk team page

This year marks my 9th year walking at the Lupus Walk for Hope. This means almost a whole decade of living with lupus already. I knew last summer was going to be hard to beat. Last summer was my best summer yet while living with lupus. Even though this summer is not as good as last, I still can’t really complain too much. It’s still loads better than some of the others.

In the past year I celebrated my first wedding anniversary. I am extremely blessed to have Pete in my life. We always talk about how great our life is and how good we have it. I think that’s really important when dealing with something like lupus. Yes, lupus sucks, but it really doesn’t mean you can’t live a good life. Life is only as good as you make it and I intend to have a good life.

Last November a tragic story surfaced about Sasha McHale. Sasha was the former Timberwolves coach’s daughter. She passed away due to lupus complications. She was only 23 years old. This sparked some sudden lupus attention with media. The Lupus Foundation of MN called me and asked if I would do some news appearances. I didn’t jump on this opportunity because Sasha’s death hit me much harder than I expected. Although people think being on the news is fun and exciting, I kept thinking that the only reason they wanted to talk to me was because someone similar in age, dealing with the same disease I have, died. This was true. But I got past that and realized the importance of bringing awareness to Lupus. If you want to see my several news appearances, go to the media links page

Thank for continuing to support me over the past 9 years. I cannot tell you how much it means to me. My way of fighting back is raising money so future generations don’t have to go through what I’ve had to.  The money raised for the walk stays local providing hope and helping those who lives are touched by lupus right here, right now.

If you want to donate towards Kristie’s Krew’s team fundraising goal, go to our team page: Kristie’s Krew walk team page (http://bit.ly/kristies-krew-2013), click on the “Sponsor our Team” on the right. Or if you want to join us and walk with on Saturday, September 14, click the “Join our Team” below the sponsor button.

Thanks so much for your support!

Also, my Leaf for Lupus fundraiser is set for Saturday, October 12. Save the date! Visit leafforlupus.com for more information, as it gets closer.