I've been putting this post off for a few days, in attempts to gather the right words. That is an incredibly difficult task and I was not having much luck so I decided to roast one and get my creative juices flowing.
I want to go a little deeper with my experience with Lupus. I want to talk about the details, the symptoms, the overwhelming exhaustion. This is where I get honest and tell you about all the things I've dealt with because of the Big Bad Wolf (Lupus patients often refer to the disease as The Wolf because it is always lurking is the shadows, ready to rear it's ugly head at any moment.)
This is a list I've compiled of all of the ten things that I deal with almost on a day to day basis:
-Profound fatigue: A kind of tired I can't explain. I can't remember the last time, during the day, I didn't feel like I could sleep for a week. I fight so hard to stay up and awake and moving around during the day that by the time I'm ready to go to bed, my body continues to try to fight to stay awake and so goes the vicious cycle.
- Headaches
-joint pain: Rheumatoid arthritis is a bitch!
-Raynaud's phenomenon: fingers turning white/blue when cold. The picture below is not my of my hands but it shows the bluer shade that is more common for me personally, particularly when I get out of the shower. My palms turn a dark blue/purple color for about 15-20 seconds.
-Butterfly rash: A red butterfly shaped rash across the nose and cheeks
I want to go a little deeper with my experience with Lupus. I want to talk about the details, the symptoms, the overwhelming exhaustion. This is where I get honest and tell you about all the things I've dealt with because of the Big Bad Wolf (Lupus patients often refer to the disease as The Wolf because it is always lurking is the shadows, ready to rear it's ugly head at any moment.)
This is a list I've compiled of all of the ten things that I deal with almost on a day to day basis:
-Profound fatigue: A kind of tired I can't explain. I can't remember the last time, during the day, I didn't feel like I could sleep for a week. I fight so hard to stay up and awake and moving around during the day that by the time I'm ready to go to bed, my body continues to try to fight to stay awake and so goes the vicious cycle.
- Headaches
-joint pain: Rheumatoid arthritis is a bitch!
-Raynaud's phenomenon: fingers turning white/blue when cold. The picture below is not my of my hands but it shows the bluer shade that is more common for me personally, particularly when I get out of the shower. My palms turn a dark blue/purple color for about 15-20 seconds.
-Butterfly rash: A red butterfly shaped rash across the nose and cheeks
-Hair loss: Just ask my boyfriend about all the hair I leave behind.
-Mouth ulcers: Canker sores
-Lupus fog: Confusion about basic things, loss of memory
-gastrointestinal issues: Stomach pain is something I've come to deal with. I'ts a part of my every day.
-kidney issues: I've had kidney infections and double kidney infections. There were night when I thought I was seriously dying. I felt like my body was shutting down. I get goosebumps just thinking about how sick I was. So I try to drink tons of water and watch my sugar intake as much as possible (which I struggle with!)
-Mouth ulcers: Canker sores
-Lupus fog: Confusion about basic things, loss of memory
-gastrointestinal issues: Stomach pain is something I've come to deal with. I'ts a part of my every day.
-kidney issues: I've had kidney infections and double kidney infections. There were night when I thought I was seriously dying. I felt like my body was shutting down. I get goosebumps just thinking about how sick I was. So I try to drink tons of water and watch my sugar intake as much as possible (which I struggle with!)
Here is a list of all of the other symptoms that don't affect my day to day as much but have still affected me as a result of this disease:
-Fever
-Skin lesions or rashes, especially on the arms, hands, face, neck, or back
-Anemia (oxygen carrying deficiency of red blood cells)
-shortness of breath
-Sun or light sensitivity (photosensitivity)
-Abnormal blood clotting problems
-Weight loss and/or gain
-Dry eyes/mouth
-Easy bruising
-Anxiety, depression
Here is a list of things that I'm supposed to avoid:
-stress
-sunlight
-intense physical activity
-garlic
-sulfa meds
-echinachea
-alfalfa sprouts
-melatonin
-alchohol
-sodium
-anything immune boosting
.....
the lists go on and on
Lupus takes it's toll on everything: Nervous system, gastrointestinal functions, multiple organs,
vision, cognitive function, joints, muscles, vagina, mouth, hair, fingernails.....everything. It increases my chance of getting cancer or having organ failure. It increases my chance having a stroke, seizures, and hallucinations and bone tissue death. It also increases my risk of having a miscarriage and it is degenerative so my children or my children's children would most likely have it as well.
Lupus has left it's mark on every inch of my body. Sometimes it's overwhelming. Sometimes I wonder about what my life will be like when I'm 60 years old if I already hurt this much at 21. Sometimes I get so angry that I just SCREAM. Every day is a battle and it's all too easy to sit there and play the "poor me" card and wallow in my self pitty but my every day battle has turned me into a fucking warrior. I will fight for every single day because days are all that I have in this life. I refuse to lay on my couch and waste away while the time I have slowly runs out. No, I'm going to love every second, even in the seconds I hate. I am going to marvel at life and the world and go climb a God dam mountain when I'd rather be sleeping. I'm going to love fiercely and deeply and allow myself to be affected by things because who knows how long we have.
I have Lupus, Lupus does not have me.
-Fever
-Skin lesions or rashes, especially on the arms, hands, face, neck, or back
-Anemia (oxygen carrying deficiency of red blood cells)
-shortness of breath
-Sun or light sensitivity (photosensitivity)
-Abnormal blood clotting problems
-Weight loss and/or gain
-Dry eyes/mouth
-Easy bruising
-Anxiety, depression
Here is a list of things that I'm supposed to avoid:
-stress
-sunlight
-intense physical activity
-garlic
-sulfa meds
-echinachea
-alfalfa sprouts
-melatonin
-alchohol
-sodium
-anything immune boosting
.....
the lists go on and on
Lupus takes it's toll on everything: Nervous system, gastrointestinal functions, multiple organs,
vision, cognitive function, joints, muscles, vagina, mouth, hair, fingernails.....everything. It increases my chance of getting cancer or having organ failure. It increases my chance having a stroke, seizures, and hallucinations and bone tissue death. It also increases my risk of having a miscarriage and it is degenerative so my children or my children's children would most likely have it as well.
Lupus has left it's mark on every inch of my body. Sometimes it's overwhelming. Sometimes I wonder about what my life will be like when I'm 60 years old if I already hurt this much at 21. Sometimes I get so angry that I just SCREAM. Every day is a battle and it's all too easy to sit there and play the "poor me" card and wallow in my self pitty but my every day battle has turned me into a fucking warrior. I will fight for every single day because days are all that I have in this life. I refuse to lay on my couch and waste away while the time I have slowly runs out. No, I'm going to love every second, even in the seconds I hate. I am going to marvel at life and the world and go climb a God dam mountain when I'd rather be sleeping. I'm going to love fiercely and deeply and allow myself to be affected by things because who knows how long we have.
I have Lupus, Lupus does not have me.