February's Blog (Part 1) - Jenny's Journey to Diagnosis

February's Blog (Part 1) - Jenny's Journey to Diagnosis

Hi everyone. The first of this month's blogs has been written by Jenny about her experiences in getting diagnosed with lupus. We'd like to say a big thank you to Jenny for taking the time to share her story.

My name is Jenny, I’m 39 years old and I have lupus. I am currently practically bedridden and undergoing weekly infusions.

I have a five-year-old little girl named Lola. I used to work with drug addicts who had lost their children. I had a very busy life and was successful and happy. I fell ill about three years ago. I noticed that I had started losing a lot of weight and was getting very fatigued. I sat undiagnosed and suffered for some time before being diagnosed with Hashmioto’s disease. I had periodic setbacks with Hashimoto’s but learned to manage it.

Last August after a trip to Los Angeles, I started to get sick. At first I thought it was just a normal set-back but soon realised that I wasn't getting better and that something was different this time. Slowly I was losing my ability to function. I was exhausted as soon as I woke up in the morning, my body was hurting like I got hit by a car, and sometimes I was so fatigued that by the time I got to work, I couldn't get out of the car. I would just sit there and wait until I could muster up the strength to go in. I knew something was very wrong, it felt like my whole body was shutting down on me. I ran to my endocrinologist who was quick to dismiss me and my thyroid blood results, telling me they looked normal. I went to my GP begging her for help. She said she felt maybe I was just fatigued or depressed and reluctantly sent me to a rheumatologist and ordered blood tests.

By the time I was able to crawl into the rheumatologist’s office, my blood tests had come in and he told me I had lupus. I was relieved and crushed all in the same sitting. My husband and I had been having problems in our marriage at the time and I was barely managing. I felt like I was falling apart and I had my little girl to take care of.

I was put on Imuran and Plaquenil and given a low dose of steroids in case I needed it. I protested at first but I finally surrendered and also took disability leave. After a month and a half I started to feel better. I asked my doctor if I could go back to work and he said he wanted to see me in remission for longer, but he let me try. Off I went; back to work to a big stressful caseload. Within a week I was in pain and falling behind. After two weeks I couldn't wash my hair and by week three I surrendered again. I couldn't believe it. I was at the top of my field and now I couldn't even take a bath without help. Thankfully my husband came home and it drew us back together. It was hard on my daughter who couldn't get her mom out of bed. She doesn't know yet, but she will eventually have to change schools next year because we can't afford to keep her in her school, all because of my lupus. Her friends are there, the ones she’s been with since she was a baby.

I tried to prepare myself for the possible low I had coming. I re-enrolled in school for a class. I thought that maybe I’d pursue my degree one class at a time. I also started a little Mary Kay business and taught a class at the local college once a month. Here I am in bed though. Everything that was supposed to be doable isn’t. I had to drop out of school, cancel teaching my last class, and I haven't sold anything or attended training due to being sick from the infusions. Last night my husband took me to the office I’ve had for over half a decade and I cleaned it out and shoved the key under my supervisor’s door. I took all my pictures down, took down the awards and cleaned out the files. Who am I now without all the labels? I don't want the one that says I have lupus.

I guess it’s my faith that gets me through but I’d be lying if I said I'm not scared. My body is shutting down, I feel it every day. I know I don't have organ failure yet but I’m on a lot of steroids and they keep putting me on more and more and they don't do anything anymore. I know my lupus is progressing, I can feel it. I do have a lot of hope in the Benlysta treatment. I probably will get my life back, maybe by spring. My life will consist of ups and downs forever with this disease. It’s not like I get sick for a couple days…I get sick for months.

There has been some good that has come from this - I have slowed down. I was going too fast; giving too much to my work. Now the only place I go is church and interestingly enough, I partnered with a woman in our church and we started an outreach. I have some connections in Sacrmento County with the treatment providers so I’ve arranged meetings and they've been kind enough to come to my home. Even if I can't go on, it will help thousands of people who are in great need. I think that’s pretty cool. I guess some things happen for a reason. I just wish it didn't entail me being deathly ill.

The second part of this month's blog should follow tomorrow

4 Replies

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  • Well done Jenny what an inspiration you are.

    I also have Lupus SLE. Had it for 14 years but most of my days are good I am very lucky I work part time and am studying to become a CBT therapist.

    Loads of love and luck to you and your family I hope the days become better for you

    So you can fullfill your dreams xxxxxxxxx. X. X. Xx

  • Same to you my !! Thank you!

  • Thank you Jenny for sharing you blog with us and I look forward to part two tomorrow. I can completely relate to the whole job front thing.....gone from being a busy social worker who loved my job, the adrenaline, the caseload and making change happen for others. On good days I still think I will be able to get back two days a week......but the liklihood is that this will not happen. My mind wants to do so but my body seriously lets me down with fatigue and the usual aches/pains we have. There never seems to be two days the same with this condition. I hope you do feel better by the Spring and the meds continue to help you. We have to have hope after all ....it's what keeps us going. Thanks for sharing xx

  • For sure,no day ever feels the same.i think there is a grieving process ,an acceptance process and then ultimately a redefineing process.I'm still just trying to figure it out though everyday.thanks for sharing!

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