The past few days have been really difficult for me. Lupus is a cruel mystery. My days have been filled with doctors appointments and uncertainties. It’s discomforting to hear your health care provider say, “With Lupus, it can be anything.”
I’ve been experiencing severe chest pains. Coming from a healthcare background, I know that chest pain is something that you cannot dismiss. I called my Rheumatologist (Lupus doctor) about my symptoms. I waited one whole day to hear her nurse tell me that I need to go the emergency room. I’ve called this lady before about other symptoms and her answer is always, “go the emergency room.” I hate the emergency room. They charge you an arm and a leg to give me a prescription for Prednisone (which my rheumatologist could have done) and send me back home. The E.R. has been my home away from home for the past year and a half. So, I skipped the emergency room and went straight to my local urgent care. I figured they could do the same tests for a lower cost and less invasive procedures. I was quickly met with disappointment when they told me that my EKG is abnormal and that I need to do to the emergency room, anyway. I head to the emergency room only to be greeted by 40 people who are currently dealing with the flu epidemic and was told that my wait would be three hours or longer since there were only two doctors on staff. And that’s not even the tip of the iceberg.
Lupus is a cruel mystery because there is something wrong, but no one can tell me what it is. I continue to give away our hard earned funds to big pharma, hospitals, and private doctors offices without a guarantee that the medication would even help with my symptoms. Daily symptoms include:
- Memory Loss/Confusion
- Shortness of breath
- Numbness is fingers and toes. They also turn white
- Fatigue and unexplained fevers
- Unexplained rashes
- Unexplained hair loss (which isn’t that bad since I can convince my husband to buy me stylish bonnets and wigs)
- Nausea/vomiting, unexplained abdominal pain
- Hours of phone conversations with doctors and hospitals that eventually lead to questions and concerns being unanswered
- Extreme muscle/joint pain and inflammation
- Depression (but I kind of had this before my Lupus diagnosis, so I can blame Lupus? I will anyway)
- Unexplained weight loss (I weighed 185 pounds in October 2016. Now I am currently 104 pounds)
- NO eating chocolate (this is the cake topper, here)
My days and nights have been filled with thousands of tears streaming from my eyes. Worry has been plaguing me every minute of every day. What is wrong? How can we fix this? How can I become healthy again?
There are so many blogs, Instagram pages, and ads all telling me how to live a healthier life. The only thing that all of these resources have in common is their solutions cost money. If you ask my wallet, “what is money?”, it’ll ask you back, “what is money?” True story.
I thought about starting a GoFundMe page to help pay for medical expenses, but the thought of asking for money from strangers is uncomfortable for me. I feel like everyone is working hard for their money. Who am I to ask for it? Even if it is for a good cause. I want to believe that God will provide for me and my needs. I’m just so frustrated, sad, and angry. Frustrated because I’m dealing with an illness that healthcare professionals have no idea what it is. Sad because I feel like I’m letting down my family. Angry because I just want answers. I want to be better. I want to become the person that I was meant to be.
If you are a prayer warrior, please pray for me. Pray that God reveals his plans for me. Pray that I will be released from the prison of chronic illness and mental hell.
I came across this scripture that helped the tears stop flowing for a moment. That short time was a blessing because I don’t want to cry anymore. It gives me great comfort to know that my Lord is willing to take my burdens. I know I just have to be patient.
“Come to me, all of you who are tired from carrying heavy loads, and I will give you rest. Take my yoke and put it on you, and learn from me, because I am gentle and humble in spirit; and you will find rest. For the yoke I will give you is easy, and the load I will put on you is light.” -Matthew 11:28-30