Category Archives: Diagnosis

5 Things I Learned from Lupus

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I feel like I am a success story with Lupus. One big reason is that the good Lord gave me mild symptoms and for that I am grateful, but another big reason is I have learned to live with it and know my place with this autoimmune disease. So here are the top five things I have learned after being in tune with my autoimmune:

1. What you eat matters!

This took me a while to accept but it is true. Certain foods (mostly processed) will send me into achy overdrive. It does not mean that I cannot or do not eat those delicious cheese fries, Cheetos or fried anything…but it does mean I know I will pay the price and honestly it is not always worth it.

2.Have less fear if the liquid is clear.

I had read somewhere that the darker the liquid, the more things added to it. No clue if it is true, but I have found the clear liquids do not send my body fighting as much as the dark. Coke, beer, sweet tea (why, God, why?) get me achy and fatigued, but if I stay with Vodka, Sprite or of course water then I can usually keep the party going.

3. Say yes to the mattress!

Who would say no to a good nap?? I immediately get sick when I live a lifestyle of less than 8 hours of sleep. Now life is busy so this is not always possible, but our bodies are made to need rest and we need to choose to listen.

4.Say NO to stress!!

As a teacher, stress is inevitable. A quote I read says “Teachers make more minute by minute decisions than a surgeon.” I believe this…so stress will happen, but I can choose to avoid stress whenever possible and I do. One way is I stopped watching reality shows or any show that is fighting just to fight…trust me this was hard…but Real Housewives or Mobwives just had to go. FB drama had to go too…I refuse to click on the video with the fight or add comments to the political posts going nowhere. In my marriage, when things get heated…I go to the word and prayer instead. Life in general is lived more peacefully when you know God is in control and has a purpose for you. Now, I am not quite at the place where yoga is more calming than painful, but I am sure I will get there.

5. FINALLY..Exercise helps.

This is tricky because overdoing it wears me out. Also, when I have already worked all day the last thing I have energy to do is go to the gym, but it helps. I will admit that. Probably helps with the stress and mind part of things, too. But I used to refuse to work out and now I make time for it. In the beginning, it is exhausting, but as you build stamina it gets better. 

Now I am sure you are all reading and thinking duh! Even people without Lupus know eat right, get exercise, and rest will help the body…but here is the question: do you do it? Likely, a little but not all the way. I have learned I have to do it or I have no energy, run a fever and experience joint pain. No fun, right? So everything is a choice but my choice is made loud and clear with my body. I have learned to (finally) listen to my Lupus for a happier life!

Adventures with Absence Epilepsy

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We noticed when he was around 3 that he would have these moments of going blank. At first, it was so quick that you would have to be staring at him to see it. Over time, it became more often and more noticeable that it was pretty obvious. At his worst, they would occur 20 times an hour and his eyes would roll back in his head. After much testing, we were finally able to get him diagnosed and on medicines.

Now, he has been on medication for over a year and we notice some academic delays. These are delays that could have always been there or delays caused by the seizures, either way we want to be able to make the best decisions for his schooling.  As part of the process, we were instructed to get another EEG and thankfully we could do it over the summer. He did a great job! This test is stressful for this mama as they flash lights in his face, make him sit still for 30 minutes and strap him up to a machine. We are hopeful the results will give us more answers that the medicine is working. His testing was done at a hospital just for children which feels more like a playground! One of his favorite things is the trains…they are amazing and such a blessing to a nervous mom.

He is smiling so big because we timed that shot perfectly so he was in a pic with a train. God has been so good to us during this process to get him the treatment he needs. We are hopeful that he grows out of the seizures in a few years and continues his path to greatness.

Lupus Limits…But Does Not Stop

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I must admit I am one of the fortunate ones living with Lupus. My symptoms are mild, the meds I take are working, I was diagnosed quickly, my vital organs are unaffected; seriously, I am fortunate. My Lupus mostly involves my nervous system, my endocrine system and reproductive system. All those systems or words I would have never known before my diagnosis so basically my nerves, blood and ability to have babies. When I flare and I do weekly, I get fatigued due to chronic anemia, my joints ache like a 90 year old man, and my fingers turn white or purple. Right now my flare includes Pleurisy which means the lining of my lungs are inflamed…the sun is my enemy. Through it all I am grateful because my God has used it for good. This disease brought me a child through adoption that I would not have ever met, the sick days help me to appreciate the healthy days and my experience has helped me to encourage others going through similar things. To be in my low thirties with a chronic illness triggered by such common things as the sun and stress is intense, but I am alive and choosing to stay alive (there are some flares so bad I have felt like death) and choosing to live my life rather than let it live me.

Insert soccer.

When I was being diagnosed I told my doctor I played soccer. His response: not anymore. He went on to tell me that my blood levels showed low iron and chronic anemia so any major physical activity was dangerous. I took a few games off, but continued to play. The fatigue was intense after sunny games but we always had subs so it worked. However in the fall of 2016 I was in a major flare and for the first time in 15 seasons I had to say I could not play. It was defeating as I knew I was really sick to skip soccer. 

That was 2 years ago. I probably felt good enough to play again, but new players join and your team changes.  So I was not asked the next season and then I think the team took a season off so when I got the text to play I considered it. My biggest concern was that my lungs are inflamed right now which feels like a heart attack while resting and like an asthma attack when running-not too smart to say yes, but it will go away.  I also knew it would be hard after not playing two years so I had to speak to my hubs since he would be watching the kid and me if I get sick, but when he cheered me on I went for it.

Last night was the first game and it felt good. I was nervous all day, resting my body, drinking water, taking medicine…but it all felt good.  My biggest fear was my inflamed lungs and they were tight after long sprints, but two subs on the side could be called in at any time.  We won and I got some good touches, but most importantly I played. I was fearful two years ago that I never would again. So unsure if it was a good idea that I kept it a secret so no one could talk me out of it. But I feel okay the day after and since the games are at night, I think swimming will kill me before soccer ūü§™ 

Lupus does limit me, but it will not stop me. Soccer is what I do for myself. On the field I feel my sexiest and my mind is cleared.  I feel badass to be 38 and still playing. The best part is I challenge my mind and body and grow closer to the Lord as I praise him for the chance to show good sportsmanship and meet others with the same passion. Today I am grateful to be a soccer player living with Lupus again. My call of action to those without chronic diseases is to go out use your body. It is a beautiful thing of science and should not be wasted. Do not waste your health!

You Take the Good with the Bad

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We are on Facebook Fast Day 10 and I think I am slowly getting used to life without it.¬† I don’t find myself missing it as much since I have not been on it for ten days.¬† I do catch myself wondering about certain people’s posts about various topics or feelings about world events that I know would have something to say, but I enjoy being separated from the drama.¬† A coworker will ask me if I saw so and so’s post etc., but I can honestly say no and I have no idea what is going on.¬† I do feel isolated from current events or from social happenings around the community; the main reason I joined is because a friend was moving to Australia and a different one got engaged and I had no idea because they thought I knew through Facebook.¬† People don’t call each other to share news or even email…they just post it on Facebook, so I feel I am missing out on that, but you have to take the good with the bad.

I went for my semi-annual Lupus check up today.¬† It is only on these days that¬†I remember I have a chronic disease that is in constant need of monitoring.¬† Only on days like today where I see how bad my disease could be that I appreciate the mildness of it all even if it is inconvenient.¬† For the first time ever, I got a bone density scan to measure if my bones were deteriorating due to the steroids I take daily.¬† I did surprise the machine guy with my scoliosis.¬† He thought I was sitting straight at first, but then realized it was my back and calmed down.¬† Thankfully the test had positive results.¬† We took my usually two vials of blood to monitor that the levels stayed the same and then did my normal check up.¬† This time I had a¬†concern because my scalp has developed these lesions that are causing my hair to thin in areas and I am not having that hair loss!¬† He recommended a visit to the Dermatologist but assured me it was an effect of the disease and the hair will likely grow back.¬† I can tell that I am in a flare or about to be because of my extreme weight loss.¬† I am down five pounds, but eating more or as normal.¬† I like the natural weight loss, but will not tolerate hair loss…I guess you got to take the good with the bad!

Finally, my son is in the Terrible Twos in full swing.¬† The amount of “mine” “no” “I don’t want to” and pure break downs when things do not go his way are intense.¬† We call him bipolar Callen because one minute he is on top of the world and the next he is sprawled out on the floor.¬† We are trying to balance the thought that he is learning these bad behaviors to get our attention¬†with this is just the age and we must push through it.¬† We are constantly reinforcing him to use his words and express his feelings while punishing using time out when necessary.¬† The good thing is our caretakers report he does well for them and the meltdowns are non-existent or minimal, but not sure why we get all the good stuff.¬† Hoping we are not encouraging the bad behaviors without knowing it, but we have no idea are just trying to do our best.¬† As I am fussing at him for taking out the chicken hammer, spilling the bubbles, putting his sock in the water and carrying the laundry basket into the shower…I thought I was about to reach my breaking point.¬† In my mind, I was thinking “we are not going to make it out of the twos” and then my mind went back to the mother that lost her 17 month old girl on Thursday and I know she would give anything to have the terrible twos.¬† I know she would sell all she owned to have one more day of spills, tears, messes and meltdowns.¬† I appreciate that I am blessed to have these moments with him…the good ones and the bad.

The good news is: Facebook Fast, Lupus and infamous two year old behaviors–I am blessed with the good and the bad.¬† Humbled tonight in so many ways especially knowing that the sweet parent tonight endured her child’s viewing.¬† I know God is good and He loves us.¬† I know God is faithful and His promises are true, but this one has rocked me.¬† Why give that good and perfect gift to later take it away?¬† I know she is in a better place, but my heart hurts at the thought.¬† Her story has rocked me today.¬† I know she will get up and breathe and take it day by day and hour by hour…I know she will find the strength, but I wish she did not have to.

When God speaks…

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So my heart is still so heavy with all the loss, pain and challenges friends/strangers are experiencing. Some of the situations I know personally and others I read through social media and yet they still have impacted me. Their stories have made me cling closer to God and really cry out to Him on their behalf. I feel so many thoughts and emotions that I don’t know what else to do but write. I feel selfish writing about myself in a time like this, but my experiences are all I have. I also feel compelled to take my challenges and use them as an opportunity to encourage, comfort and help those that may need it like I did when I was going through the fire. The blessing of hardships is you learn from them and then can use that knowledge to comfort others. Today, I wanted to share a few specific times God spoke to me…

1. God spoke to me during a dark time in my college years. Did I listen? No. But he was calling me to stop and turn around. He gave me a way out time and time again, placed people in my life that knew I was getting out of control and even punished me in ways that I should have seen the destruction that was still ahead. Sadly, I pressed on and took a lot of hard falls because of it, but He spoke nonetheless. He tried. Later when I fell flat on my face…he picked me up and showed me grace. Amazing grace. God speaks through people and circumstances.

2. God spoke to me on the toilet during my separation. You may know my husband and I separated for two years. One year we lived a part and one year we just ignored each other or argued. Still don’t know how we are standing here today, but praise Jesus we are and celebrating ten years in November! (Yes, we count the two years that were doomed because we were still married!) I remember I kept trying to fix it. I would send a text, write a letter, make a phone call to him or make a phone call to her or just call a friend to see what they knew. I tried to fix it over and over and over again and it was exhausting. Until one day, I was contemplating my next move while peeing (probably peeing..who knows) and distinctly felt God speak to my heart “Stop!” Stopping to me felt like giving up, so I did not take this message lightly, but he said it again…”Stop!” When He finally got my attention he stirred in my Heart “Do nothing.”
What? The marriage will end…
He responded…if you keep doing what you are doing it will end anyway.
I argued some more before finally letting Him win and stopped trying to fix it and let Him take control. The hardest six months of my life followed in that I did nothing. I tended to our home, tended to my work, tended to my personal growth and the needs of others and just let God be God. We are still married today because in the silence God changed my husband’s heart. During that storm of life (by far the hardest thing I have ever endured and I have Lupus and infertility), God reminded me to keep my eyes on Him during the storm. “Watch me-keep your eyes on me.” I love the quote “God might be doing the most when it appears like He is doing nothing at all.” God speaks to your heart and He speaks in the silence.

3. God spoke to me through a Bible verse about my Lupus. Psalms 103:3. I read it one night before bed and it turned on a light that God is in control of this disease and healing in His hands. This gave me such comfort through infertility as well. God is the great physician. This verse was later in a song at church and it gave me such hope and strength during a tough time of feeling helpless. The song is: https://www.youtube.com/watch?v=5sG94EKGDcU another powerful one that goes with this verse https://www.youtube.com/watch?v=XtwIT8JjddM God speaks through His written word and in church (duh)…the trick is you have to read it and go.

4. God spoke through a song on the radio about the direction for my adoption. I had just visited the reproductive endocronologist (still don’t they I have ever spelled that right) and got the devastating news that pregnancy would not be in my future barring a miracle (which is always possible-but I am content that it may never happen.) I was beat down with that bad news because I had still clung to hope of IUI or IVF and we were willing to do that if he thought it would help. In his words “I could take your money and we could try, but it is not likely.” My OBGYN later said it more harshly, “Getting pregnant with your blood levels like these would be devastating to a baby and would possibly kill you.” She later went on to tell me how high risk my pregnancy would be and how I much monitoring would be needed..blah, blah, blah. I get it…no. While I sat in the parking lot of Schlotzky’s ( I eat for comfort) this song came on: https://www.youtube.com/watch?v=yooJzuW8XDA This song spoke to me that God has a plan for my broken reproductive system and to go where He is leading. We began the adoption process the following week. God speaks through the radio.

5. On the day we were leaving to Houston to adopt our child and I was still so frantic and worried that we would get all the way there and the birthmom would change her mind, my devotional that morning (also on the toilet–hmmm???) was from Max Lucado and it spoke about taking risks. One of the lines in the devotional and it is saved in his baby book if you think I am a lie said “Go adopt the baby.” I ran out to Nathan and showed him the devotional and said “This is it. Let’s go adopt our baby!” It was an affirmation from God (and be mindful I am hit and miss when I open my devotionals and I am not even following the dates correctly. For instance my devotional today said December 22nd…I just read them when I can.) But this one was for me and it was for peace and comfort when I needed it most. It was Him speaking to me-I am with you. God speaks in the bathroom–ha just kidding or maybe–but God speaks through devotionals.

Now, you might have noticed a trend that God speaks to me most in my hardships. Sadly, that is often the only time I am listening. I pray for you and for myself that we listen in the good times too, during times that we don’t feel like we NEED him. (But hey, if a trial brings me closer to God then bring it…not really, I am good.) But, if you ever question if God speaks-he does. Stay near to Him and in His presence and you will hear it. Through a song, a hymn, a verse, a person, a text, a blog post, a peace in your heart. It happens.

The good news is: I don’t want this post to me about me and my problems, but it might offer someone out there encouragement when they need it most. Some day soon, my posts will be more light hearted and fun, but for now, I am grieving, praising and praying for the people that need it most. I pray that you are listening to what God is speaking to you because in all of these situations God has spoken to me. Your trials have drawn me closer to Christ; they are not in vain.

Resolve to know that infertility can be a blessing…

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Is infertility a good thing?….Heck no, it sucks!¬† I despised waiting month after month to see if I was pregnant….hoping for two weeks then crying for the next two only to start the cycle again.¬† It got to the point where discovering my cycle had started became a sweet relief because at least I could stop hoping and resume normal living.¬† The worst feeling in the world is to be so out of control of something that is so normal and easy for others.¬† I had plans, a calendar, a kit, a timeline and month after month I had to rearrange and restart the future.¬† Sitting in a doctor office with a title I can’t even spell, so I willl abbreviate RE, was embarrassing.¬† You felt sympathy for every couple in there knowing you all shared a horrific common bond: you can’t get pregnant on your own.¬† It was a miserable time in my life so I am not saying I enjoyed it, but looking back being infertile is one of the things I consider a blessing…

Why is it a blessing?  Glad you asked:

#1 It is the exact reason I began to blog.  Before Lupus and infertility, I did not have much of a story to tell.  Nothing about me set me a part or made my story important.  Enter disease and a non working reproductive system and now I am interesting!  I never knew there was such a large world of writers that had experienced or were experiencing the same heartache and same struggle that I was going through.  I began to lean on their stories and cling to their comments.  Their likes inspired me to write more and my anonomity helped me to be real and open and it felt good.  Infertility gave me the chance to be a writer again and reconnect to a passion that I had lost.

#2 Infertility gave me empathy.¬† I was like most women clinging to birth control until the exact month I wanted to get pregnant then getting off it and expecting to see positive lines.¬† Month after month after month then year after year it all showed blank.¬† I now empathize with couples that it is not easy.¬† I feel for couples like us that just don’t decide one day we want one more or to go for a girl this time.¬† I don’t assume anything anymore and I learned to celebrate big with those that are successful and cry genuine tears for those that are not.¬† I understand women that struggle with conceiving children in a very unique way.

#3 Infertility brought me closer to God.  I learned patience, I learned timing, I learned I was never in control and the delicate system of our bodies is too much even for science to explain it all.  I clung to his promises and faithfully believed that I was not alone and my prayers were being heard even if the answer was not the same thing as mine.

#4 Finally, it led me to adoption.¬† I never considered adoption my last resort…I just never paid attention to it before.¬† When the door was finally closed to conceiving naturally then I opened my heart to another option.¬† An option that I did not consider because I did not think it was my calling.¬† Time after time, God dropped hints and signs, but I am so stubborn in my own plans that I kept telling him, “Shhhh…”¬† Finally, I stopped praying to get pregnant and began praying to create our family.¬† The timing was perfect for God to lead us to our son.¬† The boy I was meant to parent all along¬† and the reason I was born.¬† Our son is amazing and¬†a promise fulfilled in every picture we take that I am living the dream. The affirmation of every decision I ever made that led us to him…our child…the perfect one for us.¬† Infertility made me listen to that calling and to stop trying to figure it out.¬† It shut the doors that I kept open with my foot because I wanted to do what I wanted to do.¬†

If I had another life to live…I would do it again if it led me to the adoption of our son.¬† Infertility did not destroy me.

Now this post does not mean that I will congratulate barren women everywhere or speak on behalf of increasing infertility for all the joys it will bring.¬† Never.¬† But, I hope to encourage women that infertility can be an opportunity to turn something tragic into a triumph.¬† Don’t let infertility define you and when you get the chance, be a rock for others to empower us to continue looking for healing.¬† Infertility takes a lot, but it does not take everything.

‚ÄĘhttp://www.resolve.org/infertility101 (Basic understanding of the disease of infertility.)
‚ÄĘhttp://www.resolve.org/national-infertility-awareness-week/about.html (About

Selena Gomez and I might finally have something in common…

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Rumor has it that Selena Gomez has Lupus and is taking time off from her tour to rest and recover.¬† Now, let me reiterate it is a rumor and has not been confirmed, but sources say it is true.¬† First, the more celebrities that get this mysterious disease the better because that is how money gets given to find a cure.¬† I envision a day where every NFL or basketball team is wearing purple on one game a year¬†in honor of finding a cure for Lupus…I love pink for breast cancer awareness, but the campaign has done a great job and now that disease has an 85% cure rate…let’s¬†include a disease that has yet to be cured and affects way more women than men most in their child bearing years (of course I say all this knowing a cure will help me and I say all that out of respect for the amazing job that Susan G Komen has done to get funds); heck let’s raise funds for both diseases and wear pink and purple!

Well, Selena, if this is true then I know how you feel.¬† We don’t have the same taste in men, but we do have the same fatigue and aches and pains that come with Lupus.¬† If you are like me, the more you do the more tired you get and the more angrier you get for not doing all the things you want to do.¬† Like me, you don’t look sick so people don’t expect you to act sick.¬† Like me, you have big dreams of working out and not getting fat, but one pill of Prednisone and you gain five pounds and your face looks like a bloated moon.¬† You may be like me and wake up with joint stiffness every day so bad that you have to strain to pick up your baby and some days you just can’t pick him up.¬† You have to have your husband open jars because your fingers won’t twist right and Bengay is on your night stand to relieve your shoulder pain.

You might have to take six different vitamins to replace the ones that are lost and you might find sweet symptom relief from a hysterectomy.¬† In short, if you have it, then I get you way more than most.¬† So, I hope you don’t have it because it sucks.

Saying all that, I am so blessed because my heart pumps fine, my kidneys work, I have all my neurological functions and I can work my full time job (even though the stress keeps me in a constant flare and the lack of sleep because I have a child brings me down the entire school year…I am fortunate to work since many cannot).¬† I pray it does not affect your fertility like it did me because one day you and Justin will make beautiful babies…but if it does then adoption is a beautiful thing, too and God has his Hand on that as well.¬†

Some days this disease is just something I have on my medical records and I forget I have it, but here lately, it is a constant reminder that I have to slow down, get rest and take care of myself if I want to enjoy the next twenty years of my life.¬† The morning are the worst and to say that I won’t get tired with a baby is a joke.¬† I am fortunate that I have a great husband that knows how much I hate to say “I can’t” so he does it before I have to and I save face every time.

The good news is: Lupus is a chronic disease, but not¬†a terminal one and it can be treated…but it is mysterious.¬† It is a strange thing to know that your own body is your worst enemy.¬† I appreciate all your prayers because I need them.¬† Glory to God for making all things for the good of those that love Him.