Lupus Has Hurt Me
I have the worst-case scenario of lupus... lupus as well as a brain tumor.
Juggling multiple conditions
The lupus has caused severe pain in my body, emotionally, spiritually, and physically. The rheumatoid arthritis is horrible. The headaches, heart issues, fibromyalgia and not being able to enjoy the sun like I would like to is the worst part of the situation for me.
I feel guilty right now because my daughter has lupus. She was diagnosed about a year ago, maybe two, but it is affecting her. However, in the last few months, she's been doing great. I have been passing on to her and her doctors what has worked for me. Believe it or not, I do everything naturally. No medication, only the vitamin d, that I take once a week. I take my insulin before each meal. I have since gotten off of a lot of different insulin (36 pills) I was taking twice per day.
Changing my eating habits
Today my liver was so inflamed that it looked like I had a 20 pound baby in my stomach or a tumor. A lot of the medication caused me to gain a tremendous amount of weight. I have changed my eating habits to include more vegetables, no cakes, donuts, sweets, sodas and stopped smoking. I am in an electric wheelchair because of the brain tumor, the pain in my knee and the swelling in my feet. I've since lost a tremendous amount of weight, slowly, but it went off and it's staying off permanently due to changing my eating habits. It was not easy. I did it with prayer and making my requests known to God with praise prayer. My faith is very strong, so today I really live like I don't have Lupus and I carry on I get up and I walk.
My care team
I have a care provider and a nurse. They come out to my house. I still use my hospital bed but I get up every single morning and I pray and I listen. I hope, I keep faith and I pray for everyone in the world that has lupus. People don't truly understand us. The fatigue or the waking up tired or just your joints hurting in excruciating pain. Getting up to go to the restroom hurts so bad. My heart pounds to make it to the bathroom and back to the bed. But, like I said, I live as if I don't have lupus. I press on and I press through the pain and eventually my joints are feeling better. I've been on all kind of narcotics for the pain, but they cause too many side-effects. The swelling... and then not to mention every single doctor (if you move from one state to another) won't prescribe them, so your body goes through the withdrawal on top of the lupus.
Faith keeps me strong
So I took a leap of faith and I asked God if you can do better than all of this because I'm not healed and I'm taking all of this medication. I have two Glad bags in my closet right now. Doctors don't understand why are you not taking your medication. Well, look at me! They ask for how did you lose so much weight, you're looking really great. Well in the back of my mind, I want to say because of the medicine you're prescribing... I'm not taking it. Now I don't suggest that others stop taking their medication. I highly don't suggest stopping taking your medication if you don't have strong faith because it's going to take Faith. It's going to take getting sick and tired of all of the side effects that each pill has caused. So I'm a natural person now, however, when and if I do have excruciating pain to where I feel like, "okay I can't get out of bed, I can't move and I do have flare-ups," then I will take medication as needed for that moment, that hour and that day until it passes enough for me to move around.
Find a plan that works for you
I feel each person with lupus has to find some way that works for them. Be open and honest with your doctors and your team. You should have an entire medical team. Every doctor needs to connect and network with each other regarding a patient that has lupus. I will take my prednisone if I have a skin flare or any type of congestion in my chest... but 36 pills twice a day that's ridiculous. The medication alone is killing me more than the lupus was or is. So I've been dealing with this diagnosis of lupus since 2003. It's amazing because I must say that I have been doing pretty well besides stores in my mouth. I can't afford my mouthwash right now, which is really horrible. Getting around to my appointments is even worse and that pain causes me to just give up on those aspects of my care and just fight through it all and just pray.
Support makes a difference
Now I see there's people out here who can relate to my experience. When I lived in Portland Oregon there was a Lupus foundation through Catholic charities that helped me to get to appointments and purchase things that I needed. To comfort me and medically support me. I really need that right now I am on disability and it doesn't cover everything like my rent, utilities, food and supporting my daughter on a disability income. It's just not enough but right now it's the only choice that I have. I'm thanking God that he supplied me with a disability check to get by month to month but I need to find out how I can get help to pay for my medication because my mouth does hurt. It comes and goes though, God bless you all and thank you for reading my story if you do and I enjoy and pray over the stories that I read can and we will get through this may they find it cure for Lupus.
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