This is a series to learn about different moms and their different situations. Through interviewing these women and sharing their stories I hope that we can all have a better understanding and appreciation of each other. Hopefully we can support and encourage her “in her corner.”
Who she is…
A wife, a mom to a 15 year old son (who lives with his father), a 6 year old girl and 3 year old twin boys, and a lover of Jesus. And she lives her life with lupus. She says it is “her lupus” because she owns it, it doesn’t own her. Lupus is an autoimmune disease that can attack any organ in the body. It will have seasons of flare-ups and then a period of remission. She was diagnosed in 2009 while pregnant with her daughter.
She had been exhibiting symptoms like feeling achy, or a fever for a year but was ignoring it, thinking that she was simply stressed or not eating well. After finding out that she was pregnant, she had blisters show up on her skin that resembled shingles. Her doctor agreed, and prescribed her medication. Her rate of deterioration quickened at this point. Fevers were occurring more frequently, and she was always exhausted, but she explained this away as simple pregnancy symptoms. Then the cough began, and she started to think it was the flu, but she wasn’t able to shake it. The nurse at her OB office told her to go to the ER. At the ER, they did blood work, and the results were off the charts. No one had any idea what was going on. It was so abnormal that they sent her to see an oncologist.
Within weeks she had marks that looked like bruises all over her skin. Her hair began falling out. She was not able to walk due to the pain in her hips. Her husband would have to pick her up and carry her up the stairs or to the car. He would come home at lunch to help her get to the restroom. She wasn’t able to eat. Everything tasted like glass, and it was too painful to even lift an ensure bottle. All she could do was lay there and look at the ceiling. She was giving up on life.
“While I was immobile, lying on my bed staring at the ceiling, I would talk with God, asking Him why this was happening? My eyes then focused on the textured ceiling and I could she the outline of a Jesus fish. I could hear him say, ‘I’m not through with you yet.’ From that point on, I didn’t have any more thoughts of giving up.”
They finally were able to determine that she had lupus. And had started her on prednisone, which she still currently takes. It helped, and she was finally able to eat, but it made her become jittery. She became paranoid, and unable to sleep.
The pregnancy had exacerbated the lupus, bringing out the symptoms and causing them to be more severe. She then switched to a high-risk OB, who told her they would try to get her and the baby to 26 weeks.
Her OB gave her Ambien to help her sleep. At first, she didn’t want to take it, afraid that she wouldn’t wake up. One day while asleep, her husband noticed that her complexion did not look normal, she looked very ashen. That same day, her rheumatologist called and said that she needed to get to the hospital right away for a blood transfusion because her hemoglobins were at a dangerously low level that could cause her body to fail. A low hemoglobin count means that there is not enough oxygen for the body. A normal count is between 11 and 14. Her count was 5.3. They administered a transfusion which brought her up to 7. Two days later she went for another that brought her up to 7.7. A third brought her to 9.3, and by the time her daughter was born, she was at 10.
She made it to 37 weeks; her newborn daughter completely healthy!
The drop in hemoglobin could have been due to the lupus attacking the red blood cells, but she believes that it was mostly due to the malnutrition from not being able to eat, and the baby taking what little iron she did have in her body. Lupus can effect any organ of the body; brain, heart, lung, blood, skin. She fears another flare-up will attack her blood. A flare up can effect a person differently each time, and each individual with lupus can be effected differently.
When her daughter was 8 months old, the lupus flared up again, this time attacking her kidneys and once again losing her hair. She was classified with stage 3 kidney disease, and yet another doctor was added to her repertoire. She was on the brink of dialysis, so they tried a medication to help her kidneys but instead she suffered from a rare side-effect that caused a condition with her liver. She decided to try a natural remedy that worked to improve the function of her kidneys without medication. Her kidneys have no remaining damage.
Because the pregnancy with her daughter exacerbated the lupus, they were advised to not have any more children. But they wanted a big family, so after her kidneys improved, they prayed about it and decided to let things happen. They knew that the Lord would take care of it, whatever the outcome, and soon enough she had a positive pregnancy test. Both her and her husband were hoping that she would become pregnant with twins. At her first ultrasound, it was confirmed!
“Praise God! We cried, we held hands, it was wonderful!”
Her body ended up doing better while she was pregnant the second time. Her twins were born nine weeks early, which was honestly really good. Otherwise they would have been too big.
“During that time my hair grew! It was beautiful and long and curly! Woohoo! I was actually able to do things with it. That’s the hair I remember!”
But a year later she started losing her hair yet again. And again she had a rash on her skin. She saw her rheumatologist right away, and they upped her medication so when the flare up did happen it wasn’t as bad as it could have been. Thankfully this flare-up did not effect her kidneys, but she did lose all of her hair.
She has to avoid the sun since UvA and UvB rays have been known to induce flares. She keeps sunblock everywhere and covers her skin as much as possible. She keeps hats with her and wears long sleeves and long pants, regardless of the temperature.
Food can also be a trigger. She has been experimenting with her diet, and is trying to avoid dairy, gluten, sugar, certain vegetables, soy, and nuts. She has been learning, and her doctors have supported her, that our immune system is rooted in our gut. If our gut is not healthy, then our immune system cannot function properly. She has seen good results from this, especially in her skin.
“I’m not perfect at it, I definitely like ice cream! But I will feel it in my hips.”
After her twins were born she was diagnosed with avascular necrosis, death of bone tissue, in both hips. In the future she will be having double hip replacement. For now she is stable, aside from not being able to bend well, but she is still able to walk, so they wait and monitor.
“I’ve had to adjust. I used to run, but I can’t do that anymore. The salt water pool is the only way I can get some good exercise!”
What her days are like…
She is constantly being monitored by a variety of doctors, so she has to juggle her appointments, as well as therapy for her twins for developmental issues due to them being born early. In addition to these, she is homeschooling and participates in a co-op. She knows she has to respect her limits and not overdo physical exertion.
“When I’m good, I’m full speed ahead, trying to keep up as best as I can just like every other mom. But when my body is tired, I have to listen to it.”
Her husband handles giving the kids baths, putting them to bed, attends to them during the night. He takes off work on days that she is not able to function, or if she has appointments. They are both incredibly thankful for his employer who is so understanding.
“Without my husband, all of this… He’s my angel. God took two broken people and is writing a beautiful love story.”
What her strengths are…
She knows she has to lean on God.
“I wouldn’t change any of this because it has made me His, for real.”
She is passionate about her relationship with God, and His faithfulness. She has learned to pray about everything and through every trial. She prayed through every sleepless night, every feeding, every struggle. She gets through everything one moment at a time.
What she struggles with…
She struggles with the loss of her hair. Even though a year ago was the third time losing it, it is still difficult. She had always identified herself by how she looked, and being active. She has had to reassess where her identity is, and it is in Jesus. She is still working through it.
She struggles with wanting to do it all, but knowing that she can’t.
“Actually, I struggle with wanting to do all that I want to do! I know I can do what He wants me to do. I pray daily, ‘God, let me accomplish what You want me to accomplish today. Nothing more, nothing less.’ I have to figure out what my motivation is for wanting to do more. Is it for my purpose or His purpose? And then I surrender that and ask for Him to guide me. God has me where He wants me to be. I trust that it is for Him and it is good. And that is enough for right now.”
What her fears are…
She fears having a flare up that would take her away as a mom and a wife. She has to trust that God will take care of them.
“I would lose my hair everyday, as long as I know I’ll be around.”
What her joys are…
Her deep faith, knowing that this experience has brought her to a deeper and more intimate relationship with the Lord.
Her marriage, and the closeness between her and her husband. Her husband has lived up to his vows of for better or for worse.
Her appreciation for life in general. She hears her children’s laughter and feels their joy. It reminds her to enjoy life, and the simple things.
How she stays sane…
“I read my devotional in the bathroom!”
What she wants you to know…
“Even though I’m broken on this earth, I am healed. This is temporary. Yes, there are trials but they draw me closer to the Lord. Don’t let someone tell you that miracles can’t happen, or that your hope is worthless. God is faithful. If you let him in and surrender your life, He will take it and use it. He is writing a really good story.”
And…
“Don’t feel guilty for taking naps!!”
I hope you were encouraged by this momma’s story to persevere and trust the Lord with whatever situation you currently find yourself in. Remember that His desire is to bring you closer in relationship to Him, to trust Him, and to be fulfilled by Him alone. You dear lady are being pursued, and you are enough. No more running, no more striving.
xoxo
