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Dear Journal … everything always hurts!

It has been an interesting week and an eventful weekend. I went to CT for my friend's 30th birthday and had a blast. It was nice to see old friends I haven’t seen in a while and to have some fun. Before heading up, I went to the ophthalmologist, my dermatologist, and my primary care physician. My ophthalmologist appointment took so long and I was there for like 5 hours! They did several tests and dilated my eyes, I have to get new reading glasses even though I still have 20/20 vision. I am still going to the dermatologist for my acne and scalp issues. I visited my PCP for my 6-month check-up and I have to get a kidney ultrasound next week. 

If you’re wondering why I see different specialists, it’s because I have Lupus. Systemic Lupus Erythematosus, which is an inflammatory disease caused when the immune system attacks its own tissues. The red blood cells and white blood cells are having a gang war up in here. It can affect the kidneys, joints, blood cells, brain, heart, lungs, and skin. 

I was diagnosed in 2017 (officially) and I still hate dealing with it. I have some good days but it’s still hard to get used to. It's really frustrating at times because you have moments where you just don't want to get out of bed because your body is stiff, I mean like your joints are so sore you're scared to move. It's actually been a very long road dealing with this. Let me run it back for you... 

Time: 2011 (In College)

Place: “Friends” house

A friend at the time was greasing my scalp (oil or grease it's the same to me) when she noticed a small quarter-sized patch on the left side of the parietal area of my scalp. I freaked out a bit but figured it was from me bumping my head on my bunk bed a few weeks back. I let my parents know because hey a strange thing is happening to my body and I don't know what to do. They dismissed it as it being stress-related, but then it started to grow and spread. I went to a dermatology and got a scalp biopsy which is by far the most uncomfortable and painful thing you have to do and trust me I’ve had multiple biopsies in different areas of my body and its nothing like having a headache in the same spot for 3+ days and you can’t shampoo your hair for at least two weeks until the skin heals fully. I didn't get a clear answer other than it might be Lupus but at that time, I didn't really know what that was and they didn't give any next steps besides doing painful steroid shot injections to the area(s) and me taking hair vitamins to try to help the patch grow back. 

For years, I did not know what was wrong with me but I just knew I was always tired, or in pain. I became frustrated with all the different doctor and specialist visits and no changes. It felt like no one can give me clear answers. It took forever before my primary care physician looked back over my charts and lined up all the symptoms I kept coming back in for. 

My symptoms were and still are: 

Hair loss

Persistent headaches

Memory Loss (pen and paper me please)

Dry eyes

Sensitive to light

Shortness of breathe and chest pain

Butterfly rash on my face

Nausea (literally carry mints in my purse) 

Stomach pain (sometimes I can't even eat because scared)

Swollen joints/stiffness (everyday bro 😭)

Protein in urine sometimes 

Fatigue (your eyes every burn from being so tired? yeah but every day all day)

Loss of appetite (I'm been trying to get thicckkk for like 4 years now lol)

Fingers and toes go numb / lose colors / poor circulation (I religiously use a space heater)


Insomnia some nights


Random Canker sores

Out of all the symptoms, my main issue was my skin. I am/was experiencing bruises, rashes, hives, and alopecia. She (my PCP) referred me to a rheumatologist and an oncologist, so in September of 2017, I was diagnosed officially with SLE and discoid lupus (aka chronic cutaneous lupus). Discoid Lupus is when you have red rashes of discoloration, scarring, and hair loss. 

It's been a long road but I'm pushing through it. 

“Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.” Isaiah 41:10

Let me know in the comments if you know anyone with Lupus or experience it yourself. We’re in this together. 

Until next time ... dueces ✌️