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.