How do you do it? How do you keep going with all of the pain, symptoms, and complications from lupus

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Patients Lupus

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Posted on

Hello everyone. I’m new to this platform and I just wanted to give a brief synopsis of the symptoms that are the most agonizing for me. Severe joint pain, migraines at least 15 days out of a month, depression, fatigue, scalp flares (lesions), anxiety, and inflammation. Now, I’ve done my fair share of work, but over the last 2 years I’ve been on a slippery slope downhill. Each morning is becoming more and more difficult to get out of bed. I’ve taken medications on top of medications on top of medications for each of my individual symptoms. I got fired due to leaving my job because of a bad migraine. (Hell, I had to get out of those fluorescent lights and home before I was unable to drive). Honestly? I’m sick of this shit. People, especially employers don’t understand what the hell we actually go through, and I don’t expect them to. So tell me, how does a person with no money afford doctors visits and prescriptions? I’ve been off meds for almost a year and a half and i can barely work due to all the pain I’m in. If I can’t work, I can pay for doctor’s visits. Everything is so expensive these days. I’ve been denied for disability twice, I mean, what gives? I seriously need help. In early 2017 I was suicidal and diagnosed with depression. I’m trying to lead a better life, but it’s hard ya know? I’m 25 and I’m not getting any younger, I want my quality of life so bad... so tell me... How the hell do you do it?!

Beginning of the discussion - 5/19/18

How do you do it? How do you keep going with all of the pain, symptoms, and complications from lupus


Posted on

Hello! I completely agree with you when it comes to the cost of medical care and when the only way you can really get medical care is through your job (unless you can afford a policy through Affordable Care Act) is not the best soluttion for us dealing with chronic conditions. It is hard and not easy. I am on medications and I am lucky enough to be able to be able to maintain my job whcih provides me medical care, but there are times when it is almost next to impossible to do my job because of the pain and I worry about that all the time.

I feel we need something better in this country for health care. There needs to be a better option.

Do you qualify for medicaid?

How do you do it? How do you keep going with all of the pain, symptoms, and complications from lupus


Posted on

Omg! It is terrible to not get the understanding of employers. Two years ago, I had to leave my job because of my condition and recently a semester of my graduate school for the same reason.

Despite all pain (physical and emotional), severe debilitating symptoms, I love my life thanks to the love and support of those who are around me. I’m not gonna lie. There are a lot of people who don’t get it and judge, but I am so lucky that the people I choose to spend my life with are understanding, loving and supportive. I wouldn’t be here alive and trying my best  without them.

What  had helped me with pain is an alkaline diet and avoiding acid food.

Thanks for sharing and for asking. I hope to hear from you LupusWarrior in the future.

Blessings!

How do you do it? How do you keep going with all of the pain, symptoms, and complications from lupus


Posted on

@LupusWarrior ... i wish i could have articulated this the way you did. I've traveled the world and have 4 degrees... i see myself as i used to be and it's sad. Ive been told to pull myself up by my bootstraps... I no longer have boots let alone bootstraps.  Why don't more people understand why this is so hard for us...

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