Living with Lupus is like being with your enemy on a daily basis, waking up and not being able to breath because your nose is all plugged up, even the nose drops do not do much. Opening your eyes and seeing blur and fog having to use drops in your eyes and still it does not take the fog away. Looking through my eyes is like looking through a window all fogged up and no matter how many times you wipe the window it still does not help. It takes a few hours to get rid of the fog in my eyes so I can see.
I used to think I got Lupus because of all the drinking I did in the past and drugs but I found out that no one really knows how a person gets Lupus. I used to think I was being punished but I do not believe that any more. I used to think that the stress of being sexually abused and physically abused caused Lupus. There is no known cause of Lupus. there is no cure for Lupus.
I am here to share with you my feelings and how it is to live with Lupus. I was diagnosed with Lupus (SLE) in August 2004. I also have Fibromyalgia, and OA and Diabetes.
Because I did not kill myself, with alcohol and drugs.
Because the faith I have in God.
I have to be honest I some times I feel like I have failed because I have Lupus. In reality I know I have not but some times I feel like it.
This is how Lupus (SLE) affects me.
In the morning when I wake up my mouth is all dry I can peel it at the top of my gums in my mouth it gets so dry, it last all day and night it gets some what better through the day but by evening it is all dry again, water, ice, different sprays, mouth washes, or tooth pastes, do not help much, there is not much I can do about it because if it is not Lupus that causes all these symptoms, it is the medications that I take that can cause these symptoms.
The medications I take slow my immune system down so I can live longer. My immune system is over active and that is how the organs can be attacked. Lupus is an autoimmune disease; the immune system is like a racecar that is how I think of it. My immune system does not know how to turn off, or slow down so the medications that I take helps me to live longer then if I did not take them.
Living with Lupus is like being run over by a gasoline truck, and backed up over and over again. Your whole body hurts it takes a while to get moving in the morning. Having to deal with feet swelling and burning, hands, fingers and wrists, swelling burning up for no apparent reasons, it can last a few hours to few days it can come and go you really do not know when it will stop or when it will start.
Rashes come and go on different parts of my body, my face looks like I am sun burn most of the time I look like I have a wind burn, and sun burn, it is called the butterfly rash it is on my face.
I have had this rash on my face since I was a teenager as I remember back and look at pictures I see my face looks sun burn in my childhood so I have no idea how long I have had Lupus. Many of the pains I have, started as I remember in my early 20s so who knows how long the wolf has been after me.
I itch a lot, itching comes and goes and there is not a particular reason for it.
Some times I can be sitting down and I get up and I am not able to get up and take a step the pain is strong and my body wont move. Some times I can be lying down and I am not able to sit up on the bed. Some times I can be taking a step and my ankle or knee, or back will go out on me for no apparent reason.
I am in and out of doctors offices, specialists, and I have been in and out of the ER because of Lupus acting up it is called lupus flares. In March of 2007 I had stroke symptoms, my whole left side of my body went numb and my speech was slurred I could not talk. It was like everything was in slow motion I could hear but it sounded like a slow motions movie I could not understand what people were saying.
I was told I had a stroke but after months of tests and more tests I found out it was not a stroke it is just symptoms from Lupus and symptoms of the different medications I am on.
These flares as they call it put me in the hospital I found out that I have been getting TIAs Mini strokes the last one I had was in Feburary 2012. My doctor says they are real small and do not register on the montator when I was tested. I still am being tests now for MS I was tested for MS few years ago. Seems it is just part of the journey with Lupus. Even though the doctor says Lupus is not active it has not been feeling like it.
I have been sleeping on a recliner since 2004 because I am not able to sleep flat on a regular bed. I do not sleep through the night to often even though I am on medication I am not guaranteed that I will sleep through the night. About 2 to 3 nights I probably sleep 6 hours straight the rest is few hours here and few hours there. I wake up often to go to the bathroom from IBS, it affect me day and night so I always have to make sure if I am out some where I have to make sure I know where the bathroom is.
This is what I live with on a daily basis. Pains, pains and more pain, I get pains in the chest, it comes and goes at any time. Pains in my head come and go and some times they stay and continue to disrupt my actions through the day some times the head aches can be so bad that I cannot do anything the migraines can take me over at times and there is not much I can do except take my medicine and hope it helps.
Some days I am bedridden some days I am all over the place and can do a lot. If I am doing dishes I have to sit on a stool as I wash I sit down on a stool when I cook or prepare meals, and I take breaks when doing any housework I take breaks and take much longer then I used and because it causes me a lot of pain and some times it causes me to not be able to walk. So there are things I do not do any more such as vacuuming and mopping I am blessed to have a loving husband who helps he even cooks, and he understands actually he spoils me he treats me like a Queen. I thank God for him daily.
I have a wonderful husband who has been with me through thick and thin. We have had a lot of ups and downs with this disease. Right now I am back in the wheel chair because I am going to have to have both of my knees replaced. I have not much of choice now. If I want to walk I will have to have surgery, my husband is helping me with everything wheeling me when I am not in the scooter. I will update once I have the knees surgery done.
I used to be a dancer it has not been easy for me to accept this new body I have and the weight gain I get from different medications. Lupus has changed a lot in my life. My memory is not the same I loose concentration and I have to take time out often for myself just to get my mind centered so I understand what I am reading or what someone is saying to me. I find myself repeating myself often when I speak and even when I write.
This is the way my days are I may have forgotten some things but basically this is how it is for me.
People who know me say you look good so how can you feel so bad? That is how Lupus is you can look good on the outside and be dieing in the inside. I am one of the fortunate people, who live with this disease, I do not have my organs destroyed not at this time.I thank God that I don’t.
I plan on Lupus not attacking my organs, but as we know Lupus is like a wolf it can attack you when you least expect it
that is why they call Lupus the wolf.
I have to live life the best I can I find sharing and writing my feelings and thoughts help a lot. Sharing with other people and listening to others, letting others share with me teaches me and shows me I am not alone.
God loves me and that is what keeps me going. Yes my husband does too but no human being can take the pain away, no medication can cure me at least not at this point in time.
I know with God I have the strength to live life to the fullest the best that I can.
I enjoy sharing with others and helping others this is how I help myself we share with each other, and share our thoughts with each other and it has been healing.
So this is what it is like for me living with Lupus. I feel better just sharing this. Usually in my writing I like to share about God and more positive things. But since I have been asked how it is to live with Lupus on a daily basis I felt I should share it just as it is how it is in the mornings and through out the day.
So this is it folks.
Thanks for your support and being here and reading this far.