Hello, I’m 34 years old. I was diagnosed with lupus about a year and 6 months ago. Since then, I’ve been in treatment. It started with pain on my knees and my energy was low. My job was to fill empty bins at a fast pace. Because of this problem, I had to go see my doctor and my test for lupus came. It was positive and I needed to see a bone doctor who told me that I also have Rheumatoid Arthritis. Then from there all my life changed completely.
I had to try several medications: Prednisone 10mg 1 every day, after that I was put on Hydroxchloroquine 200mg 2 times a day, then continued with another, Azathioprine 50mg 2 times a day. I sleep a lot and try to eat healthy and do exercise but it’s hard to when the joints hurt and at times I feel heavy and tired. Sometimes I’m good to go and hang out at church trying to be involved in something that can give me happiness. I sing and help care for children and teach arts and crafts. Meanwhile, my parents are learning English. It used to be two days a week of babysitting but I got very sick before going to babysit once. I saw a doctor at the hospital because of pain on the right side behind the ear. I thought it was an ear infection. The ER doctor thought it was a sinus infection. I tried the medicine that the ER doctor prescribed and went to do my volunteer job on Wednesday. The next day I awoke and went to the bathroom and noticed my right side was droopy and turned to the left. It turned out to be Bell’s palsy. Because of this, I had to be put on Prednisone 60mg for two days then lower dose every two days like this: 50,40,30,20,10. I was so sad and miserable. I didn’t want anyone to see me and on top of all things I gained weight. That was bad. I don’t like being over weight. It was hard to breath and to move around. This was like this since 11/29/10 and I needed to wait at least two months for my face to come back to its normality. I was lucky. My face went back to normal in a month and a half.
Then, after that, here I am with an upper respiratory infection. I took liquid medicine two times a day for a week. It helped a little. I’m so fed up with going to doctors I didn’t get checked to see if it went away. I kept doing what I like and I felt no better. I sang on Sunday, running out of air, but I did it. I knew I needed to see my doctor but I didn’t and waited until today to find out that the cold I have isn’t allowing my mucus or cough come out so now I am on an asthma pump -a high dose of 2 puffs 2 times a day!
The point is, it’s hard to wait for the right medicine to help me be somewhat normal and this illness makes me mad at times and feel useless since I’m so delicate. I have three kids, two teens, and one is about to be an adult soon. I also have two little dogs! It’s hard to run a home when sick and sleeping so much. At times I feel like I’m not the mother they had. I’ve got a great boyfriend who has been there trying to do my job as a parent and the kids aren’t so nice to him. So my strength is to hear what’s going on and get in the middle to stop further disrespect and calm down the temper of all parties in my home. The person I was – she was full of energy and did everything in the house from cleaning to cooking and had a great job at Dollar Tree. I always found a way to see my friends and family and neighbors. Now, not too many of the family or friends or neighbors come to see me. It’s either by text or a call or they don’t look for me. It’s always me looking for them! And this situation I’m in doesn’t allow me to much. I would like to talk to people who are going through this and give me lots of feedback like how to control my illness and how to not let pain hurt me within and out of me!
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
i would by happy to share with you my frustrations. I had an auto accident, then what should have been minor surgery. Now am diabetic, i have hepatitis C and liver cancer, gone are my relatives, friends,co workers and neighbors , i guess they think they can catch what i have by talking to me. my husband said to me you are not the woman i married, no i am not i am sick. everyone used to come to me for help moving, cooking,taking care of their kids when they were drinking or doing drugs, help when people pasted away, bailing someone out of jail or going to the hospital when others were ill….but where are they now? i am sorry the drugs have made you gain weight i am the other way i am now very thin but still with muscles but no weight behind it, i get tired making the bed, i have no weight to move things, dogs can knock me over, taking the wash from the washing to the dryer can wear me out…. be strong, cry when you can, scream when you have, just keep fighting for your life FIGHT LIKE A GIRL! LOVE MIMI
Girl I,know what you mean it’s hard and no matter what we have we have to fight ,that’s my will power finding a way to live with it and finding a way to work around it ,also to stand strong day after day for the family .Then theirs a time to wounder why people can pay back as you would, and all that we where is not all there it does kick in are feelings, something to Battle with ,the mind and are spirit of living beats us up, again and again ,at this point I believe in God and still doing good for others even if they don’t remember and I try to see where can I be when I,feel lively to have as much fun I can, while i’m up and good but there comes that time to be mad upset and worried for what will happen or what can I do to get ahead ! That’s your life and that’s mine life we bouth are Fighters of Life !
Anabel, when we met as kids you were a positive, strong, wonderful girl with a great heart. It does not surprise me that you are such an incredible woman today. I had no idea you were sick like this sweetie. Keep your head up, like you always have. The kids are kids. Kids act out for reasons they don’t even understand themselves right now, and may not for years. I am sure they love their mom and don’t truly want to cause you more stress. I am happy to hear your boyfriend is helpful and understanding. God bless you and your loved ones today and always. Thinking of you and praying for you. XOXO
I will be in touch. Take care.
Your Friend always
LOVE YOU Erin your my girl just wish we where close like the old day’s!!!
Anabel, when we met as kids you were a positive, strong, wonderful girl with a great heart. It does not surprise me that you are such an incredible woman today. I had no idea you were sick like this sweetie. Keep your head up, like you always have. The kids are kids. Kids act out for reasons they don’t even understand themselves right now, and may not for years. I am sure they love their mom and don’t truly want to cause you stress. I am happy to hear your boyfriend is helpful and understanding. God bless you and your loved ones today and always. Thinking of you and praying for you. XOXO
I will be in touch. Take care.
Your Friend always