Well, it's been 3 years so I guess it's time for a new post! I have thought about writing so many times but always when I'm in the middle of something ...so my brain moves on and forgets by the time I have a chance to sit down.

Not this time, though! I didn't like that my last post was fairly negative. I have a constant dilemma (in writing and IRL talking with anyone I come in contact with) - be a positive, upbeat person and still be honest about the diseases I battle every day. Yes, people need to be aware of this awful illness, but I want to write about the positives, too. This time, I want to share something GOOD. 

In November 2020 I went back to work. I was terrified. After being a stay-at-home mom for 6.5 years my brain felt like mush. I went from working on the alphabet and counting with my then 3 year old, to handling the budget for an elementary school (with a list of other responsibilities). Not to mention someone with an autoimmune disease going to work in a school during a pandemic. What was I thinking?! When you get asked to apply for something (good sign #1) at a school you LOVE because that's where your child goes (good signs #2 & #3) that's 2 minutes from your home (c'mon!) how can you say no?! 

Turns out it was a GREAT decision. I have met so many wonderful people, I truly love my job & and the amazing office team I'm blessed to be part of, and it has helped me be better. If you look at my lab work, I don't think much has changed. Right now I might even be in the beginning of a flare - if that's because I'm on summer break, we'll never know. However, I'm using more of my brain which has helped my overall mental health. I like feeling useful at work and having another purpose other than "deliverer of snacks" for my kids. My kids see me working hard everyday inside AND outside the home (with maybe a little rest time after work before starting dishes & dinner - waking up at 5:00 AM every day is exhausting!).  I like (most days) that I push myself through the pain to give 100% every single day. I have a sign in my office for motivation - "Start each day with a grateful heart". Not a day goes by that I don't recognize how lucky I am to still be here, to have this amazing life, and to still be on my feet. 

Hope you find something to feel good about - a great day, an amazing partner/friend by your side, family. Have a wonderful day. Hoping we can all find some good things even on dark, tough days.

Are you struggling right now? Do you need to talk to someone who gets it? Leave a comment. You are not alone.

Feeling Low

Just sat down after a tiring day. Overall, the day wasn't anything out of the ordinary. I had some pain earlier in the day that slowly progressed as the day went on. It's happened before, it'll happen again. However, the moment I sat down a wave of emotions washed over me.  Tired, obviously - I have 2 small children. Frustrated because I have pain that I can't do much else to relieve. Sad and afraid because I want to be the best for my kids but I want to cry from the pain sometimes. I don't want them to suffer or have anything less than an awesome childhood just because they drew the short straw in the mom department. 

I try to keep a positive attitude most of the time.  I'm completely aware that I'm lucky.  I could be in worse condition. Sometimes it just hits me like a truck and I get overwhelmed by reality. Does that ever happen to you? 

An Introduction

Since I'm essentially starting over, I thought I'd re-introduce myself with my Lupus life included. I'm Megan - a stay-at-home mom to 2 girls, bake cupcakes on the side, and married to my high school sweetheart. I also happen to be a Fibromyalgia and Lupus survivor/warrior. I was diagnosed in 2001 at the age of 16. I'm one of the lucky ones; it took less than 6 months to get a diagnosis. For many it can take years from symptom onset to official diagnosis. If you aren't familiar with Lupus you can learn more at https://resources.lupus.org/entry/what-is-lupus. I won't go into the full explanation here because chances are, if you're reading this, you already know about the disease. 

For me, the pain started slowly.  First my hands, then my feet along with some swelling. Then my family took a beach vacation. We spent all day out in the sun, playing on the beach and swimming in the water. That's when I woke up one morning unable to stand up straight or take a step without a great deal of pain. My family thought I was just being dramatic or sore from playing too hard, as did I.  A chronic disease was the farthest thing from our minds.  I had always been the healthiest of my siblings. The pain got progressively worse from there. Over a month after returning home, I remember waking up one morning and crying out for my sister to get my parents; I couldn't move without extreme pain and was unable to lift the sheet off myself. That's when I was truly scared. 

Once I received my diagnosis and got on the proper medication I was able to get my life back, for the most part. Obviously, things had to change. Limit sun exposure, limit strenuous activity, so on and so forth. Over the years I have been in and out of remission. It's frustrating; even when I'm being the model patient, always taking my meds and being careful with my activity, I still manage to slip out of remission. Still, I know others have it worse.  I'm lucky to still have two (original) functioning kidneys and not be on chemo (sometimes used to treat Lupus). That being said, Lupus sucks. I will ALWAYS know others have it worse.  As long as I'm surviving, others have it worse. That doesn't mean I don't get beat down by it all. It doesn't mean I don't get tired of taking medication every day for the rest of my life, medication that hurts my stomach and makes me nauseated but keeps my body from attacking my vital organs. It doesn't mean I'm not allowed to be frustrated/angry/upset that I have to prop my legs up and ice my joints as soon as I get my kids to bed because I've been in pain all day (like I'm doing right now). I have "Lupus Warrior" on my car to encourage me because some days I don't feel like fighting but I need to. I'm trying. Struggling, but trying. I fight for a life with my husband. I fight so I can be there for my kids whenever they need me. I fight to help others who may struggle. I may not have the strength every day, but I'll try harder the next. 

Sorry for the lengthy post. They won't all be like this.  If you made it this far, thanks. Are you struggling?  You aren't alone. 

Bringing Home Baby

I just gathered materials to work on our daughter’s scrapbook and am surrounded by pictures from the day she was born. Everything from that day has come flooding back.

Emma is a year and 5 months old and sometimes it is still strange to think that I am a mom.  I remember that moment the delivery/operating room; I didn’t think I would cry but I did.  When she took her first breath, and I knew she was here and okay, tears rolled down my cheeks as they continued to work on me. In that moment we became parents (even though sometimes I feel like we’re still just those 2 teenagers). 

My husband went to her immediately and stayed by her side. I will never forget the joy in his voice when her tiny little fingers closed around one of his. I will never forget when he brought her over and held her face next to mine, our beautiful, tiny girl.  
Over the next 3 days we bonded with her in the hospital and loved just staring at her. It felt even stranger when we left the hospital with her. I knew she was ours but, again, half the time I don’t feel like an adult. 

To this day, we still go into her room while she’s sleeping just to stare at her. We are so blessed to be parents and are grateful for our daughter. Being a parent is difficult and not without frustration or trying times, but at the end of each day I thank God for another day as her mom. For 12 years, I had read articles, heard form doctors, and told myself that I probably wouldn’t be able to have children. So now, not a day goes by that I don’t appreciate our blessing (literally and honestly). 

**I am gushing in this post, but it wasn’t all a breeze (is it ever with a newborn?). Our daughter had a rough start in this world - acid reflux and a milk-protein allergy meant a LOT of adjustments and medicines.**  

Starting a Family

Our pregnancy story

Back when I was pregnant, a friend told me I should write about my journey to and through pregnancy. Now that our daughter is nearly a year and a half old I’d say it’s time.  I may as well start at the beginning. 

If you know me or have read anything in this blog in the past you know I have Lupus (SLE) and Fibromyalgia. I was diagnosed at 16 and told I might not be able to have children; Scott & I had always known adoption might be the way we expand our family. 

We discovered a family member has a genetic clotting disorder during her pregnancy journey so I needed to be tested. In August of 2012 I began seeing a hematologist to get tested; I tested positive for the same clotting disorder plus 3 others. What this means is that I would need to self-administer daily blood thinner injections throughout my pregnancy.  My hematologist told me I would need to start them when we started trying to get pregnant as well, so I started on February 1, 2013.  

On May 30, 2013 I discovered a knot on my neck just below my jawbone (which turned out to be an enlarged lymph node) . My PCP referred me to an ENT, who I saw on June 10th. I had a CT on June 12th & a biopsy on June 17th. After 3 weeks of antibiotics the lymph node had not returned to normal size so the ENT scheduled surgery for July 16th.  With all of this going on I had to stop the blood thinner shots, especially before surgery so Scott & I decided we’d hold off on a baby until I was in the clear after surgery. 

However, God had another plan. Four days after surgery Scott was getting drinks at Sonic, and, since I had been limiting my caffeine intake, asked if I wanted a small or large Dr. Pepper. I took a pregnancy test to be on the safe side but told him to get me a large because there was NO WAY I could be pregnant. I went to throw the test away later and saw it had 2 lines… I was in shock.  I mean, for crying out loud I still had stitches in my neck! Slightly shaking, I walked into the living room and and told Scott I might be pregnant. He said “Really? Okay.”.  We were both afraid to get excited.  With all the things medically against us and Lupus patients are at a risk of miscarriage until 20 weeks, we weren’t all that confident.  Getting excited meant getting attached. **Warning: things are about to be detailed** Then that night I spotted, which I figured meant I was either having a miscarriage or my period. The next morning…nothing. No blood. To be sure, I wanted a GOOD pregnancy test (I’d been using test strips because the tests at the store are expensive!). 

Scott had a triathlon that morning so I went and cheered him on.  After, we ran to Target. Long story short (kind of) I was definitely pregnant. That’s when doctor appointments began. I had to see the following doctors on a regular basis: OB/GYN, Hematologist, Maternal-fetal specialist, & Rheumatologist. I used every sick/vacation day I had seeing doctors throughout my pregnancy. The shots began again immediately and continued until 6 weeks after our daughter was born, meaning I had to take the shots for a year and 3 months with only a 3 week break. My abdomen and back were black and blue with bruises and knots from the daily needles.  Thankfully in March of 2014 we had a healthy, beautiful little girl. I kept up with all doctors appointments and medications throughout the process.  We are so blessed and thankful to have our daughter.  Not a day goes by that we don’t appreciate this gift we have been given.

~ Believe it or not I could go into even more detail, but I was trying to keep this as short as possible. I’m mostly posting this for anyone who might be going through this or anyone with Lupus, Fibromyalgia, or clotting disorders who may need support. I have been fighting these chronic illnesses for 14 years now. It took a long time for me to feel comfortable speaking/writing about it but know how much it helps to know someone who has been through it. 

Camp Experience

In late August I received an e-mail from the LFA stating that Children’s Medical Center was looking for volunteers for a few weekend camps; one camp was called Camp Lupapalooza – a camp for girls ages 11-17 with Lupus.  I applied as soon as I could. I was especially motivated to participate since I was diagnosed with SLE at 16.

We loaded the buses at Children’s on Friday, September 30, 2011 and had a very quiet ride to Camp John Marc in Meridian, TX.  Camp John Marc (CJM) is a 178-acre camp specially designed for children with special needs and/or chronic illnesses; it is AMAZING!  Some of our awesome activities included a ropes course, art, pottery, archery, fishing, star-gazing, and even a Q&A with a Pediatric Rheumatologist.  It was an action-packed, exhausting weekend…and I loved every minute!

What I’ll remember most: “my” girls, the girls in my cabin.  I was one of 4 counselors in my cabin (2 camp veterans and 1 other newbie) and we had 6 campers. Knowing the strength it takes just to get up each day with Lupus, these girls were incredible with the challenges they took on, including climbing a rock wall and taking a zip line to get down! The best part: watching them take care of each other and hearing them cheer each other on.  They were friends before we went to sleep the first night. They discussed treatments and calmed each other’s fears about upcoming obstacles. One of our girls had not wanted to go to camp at all but was talking about next year before the weekend was done. I couldn’t stop thinking of one of them this Monday because I knew she was at Children’s starting chemo. There are so many silent fighters out there, battling Lupus every day and waking up each morning having survived another day. 

Camp gives them the chance to feel “normal” and be around people you don’t have to explain medications & limitations to. My biggest fear: there won’t be a camp next year.  The problem is funding.  We had enough money to take about 18 girls this year but the money was barely scraped together for camp at all. My current mission is to get sponsors or funding of some kind so Lupus kids can go to camp every year to make some friends they’ll always remember and have an experience they will never forget.

(This is the "short" version...sorry.)

Welcoming Fall

Wow, time has gotten away from me. Let's see if I can catch everyone up without writing a novel! Okay, April 2011 - for starters, Scott started a new job.  He left HP and went to Bank of America.  So far, things are going well for him there.  He's back working in an office with the luxury of working from home when he needs or wants to.  He likes the people he works with and has actual social interaction with people on a daily basis. (HP had become a mostly work-from-home job with only conference calls.)  I'm so glad he made the move - he is happier and less-stressed when he comes  home.  We had 18 adults & 3 kids walk for our team at the DFW Walk for Lupus Now event and  raised over $4,000! We had such a great time!  We always have fun and welcome anyone who wants to walk with us.  The great thing is participating is FREE.  You can donate or raise money if you want to but all that's required is showing up.

In May, the sisters & I took Mom out for Mother's Day the Saturday before.  We went to lunch at The Pantry in Downtown McKinney.  Afterwards we walked the McKinney Square and ducked into some of the shops, stopping for coffee along the way.  We, of course, stopped at Mom & Popcorn and got some candy, where we picked up these fun old favorites. Things got a little silly after that...but we had so much fun! I also changed jobs in May.  I got the wonderful opportunity to work for Kids Club again, but on the Administration side this time!  I still work for the District but this is like going home.  My friends (& family) are there and I'm ridiculously happy in my position.

June was a busy month.  Scott went to a 3-day camping & paintball D-Day reenactment tournament bachelor party.  Confused? He and a group of guys drove to Oklahoma to play in a paintball tournament (about 4,000 people were there) that was a D-Day reenactment. It was crazy (from what I heard). While he was gone I had some time on my hands.  That weekend happened to be Brenden's 4th birthday party, which was held at local fire station #3 (his current obsession).  I offered to make the cupcakes for his party.  I made the icing look like flames with a little fire hat on top.  I have since been asked to do a birthday party next year for one of the kids that attended.  I'm hoping that this turns into a little side business...

July was slightly less busy.  We celebrated our 3rd anniversary on the 5th (that went by FAST). We painted our bedroom. I had the week of July 4th off so that kept me busy while Scott was at work.  It turned out great - slowly but surely this house is looking more like a home. I ordered the quote in the picture online and am so glad I did.  It's perfect!  We drove to Waco to see our good friend, Mike, get married on July 9th.  They looked wonderful; we were so blessed to share the joy of their day and be witness to their commitment.

In August, things were a little crazy as the school year began at the district; our office definitely stayed busy! I gotta say though, working over-time is much easier when you love your job. Scott sold his old car and got a new 2012 4-door Ford Focus.  It's awesome!  I actually like this car - sorry the old one like like an Easter egg. We celebrated Nana's 80th birthday with the Reed family on the 20th. We threw a surprise party for her (she's tough - she did fine with the surprise part).  We had old friends, neighbors, & family from all over the country attend.  My dad (Nana's oldest child) got in touch with family and friends and had everyone make a video clip for Nana, which Scott combined with pictures from Nana's life and made this great video. I think it was a hit.

Finally, we come to September. Tomorrow we are going to the last Texas Rangers game of the regular season with the Perkins family; I can't wait! On the 30th I leave to volunteer as a weekend camp counselor at Camp Lupapalooza, a camp for girls ages 11 - 17 who have been diagnosed with Lupus.  I am really excited.  While I'm gone, Scott will either spend Saturday at the Texas A&M v. Arkansas game with Bryan or shooting with Travis.  Go figure that those opportunities would arise while I'm gone.  Oh well - my weekend with the girls is going to be amazing.  I will be posting after I get back.

Until then, take care and God Bless!