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Amber’s Fight Like a Girl Story (Lupus)

Amber's Story (Lupus) LRI had been pretty much healthy all of my adolescent years, until I was about 18 years old. I woke up one day and every inch of me was in chronic pain. I felt as if I had been run over. I thought maybe I had done too much the day before and my muscles were just sore. A few days later the pain went away and I thought no more of it.

I am now 33 years old and since that day I have had many more episodes of chronic pain, some lasting a few days and, the longest, a year and a half. I have seen more doctors than I can count, most told me nothing was wrong with me, that it was all in my head. I have taken just about every anti- inflammatory and narcotic on the market with very little relief. By time I turned 22 I was receiving disability and have been ever since. I have learned to live with the pain and not let it define who I am or what I want to become.

This summer I was feeling great. I went out and bought myself a bike for the first time in years. I enjoyed the rides with my children more than I imagined. By the time July came around I started to feel a little achy. Sure enough, a couple days later, I woke up in another episode of chronic pain, but this was different. I can not remember a time when the pain was quiet as bad as it is now. Being a full time student and single mother of five I have refused to let it slow me down. I have fought for my independence as hard as I could , but I have come to a point where I have to make a few adjustments.

In June 2011, I was bike riding with my children. Early July, I was using my cane and, by mid-July, a walker ( with a seat), and I just got a power chair a few weeks ago. I never stopped going to school. People call me stubborn and tell me I am doing too much but I want to set an example for my children and I want them to know I gave my all.

I went back to the doctors once again for more test and check ups that made the pain even worse. When they took x-rays of my hips I thought to myself death could not be this bad! A couple days after my appointment I got a call from my doctor telling me they know what is wrong. I have Lupus! Through my own research, I am still learning about the condition I have been living with for so long. There is a little relief now that there is a name to go along with the pain and knowing my doctors no longer think I am crazy.

I have a long road ahead of me and it is not always going to be easy. It takes much longer to do the simple things I used to but I still manage to do them. I require more sleep and rest than I use to and I will admit I have a hard time coping with that some days, but I refuse to let my diagnosis hold me back. I will continue to raise my children and get my college degree. Lupus most definitely has changed my life, but there is no way I will let it be the end.

Amber
Michigan
Submitted 11-10-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

6 comments

  1. Brynn Hultquist (@ChronicBadass)

    YOU GO GIRL!! *fistpumps* As a mom of five (I only had to single parent all five for 2.5 years)…I *know* what you mean when you say you want your children to know that you gave it your all. :o) Love and hugs.

  2. This is SO inspiring. I too have lupus and have had for last 7 years.
    Im only 20 and found it very difficult to come to terms with.
    You’ve done so brilliantly, and it proves there is hope.
    We have lupus, lupus does not have us!!

  3. YOur fight is inspiring. I have a friend who has lupus…she’s had it for 25 years, fortunately she found something that has helped her immensely. You wold never know by looking at rear that she is even sick…if you are curious message me n Facebook…https://www.facebook.com/katti.baney?ref=tn_tnmn

  4. WOW, I feel so proud of someone I do none even know. I just was diagnosed with Lupus last week after being in pain and sick since I was born. Several sinus infections, flu’s, strep, tendonitis, tested for a billion things and finally at 22yrs old a doc tested me for it. I’m so relieved to know I’m not just being a baby or its in my head. I’m scared though. Any advice?

    • I am only 27 and was just diagnosed. I am very scared as well. One piece of advice I can give you it to let people know, don’t hold it all in. You will néed any and all support you can get. My family is tremendous and I am so lucky. Also don’t just stay in bed on those days when you really want to. I know it’s like preaching to the choir. But I hve found that if I get up and even just do something around the house I feel better. If I can get outside and walk its a 100timea better. And also find someone whether it be on these forums or where you live that has lupus or something similar. You will need those people
      Bc they will understand what your going through more than anyone who doesn’t suffer ever could!!

  5. Hi all- reading your stories are giving me hope. I am a 27 year old nurse who has been fighting chronic illness such as bronchitis and pneumonia since I was a kid. Somewhere in my teen years I started dealing with severe pain in my arms and hands and feet. No testing was done she just brushed me off and Said oh you probably just have fibromyalgia and started me on meds. They didnt work well bc they made me feel like I had a drug hangover in the morning!!! Life moved on going through college. Continued to have the general aches and pains as well as andominal pain. This after many years in pain was diagnosed as endometriosis (11/11 was the diagnosis). So I thought maybe I was on the up and up with the abd pain. Well the feb of 2012 hits like a lead ballon. I get sick with a horrendous respiratory infection. Was seen in urgent care three times and ER twice bc I could not beath genuinely. The first ER said I was anxious and probably had bronchitis and sent me home even tho some of my tests were showing things. The second trip back to the er in three days and I got the same damn dr. He drew labs and re did some
    Scans just to make me happy. My labs were not normal. He has the nurse come in and tell me is still anxiety and bronchitis and send me home. This girl fought those people tooth and nail and finally got admitted. To shorten the story they called in a heart dr and a lung dr. Spent a week in the hospital on high doses of steroids and antibiotics. To go home saying it was a bad virus. The lung dr had drawn and ANA and des rate. And guess what they were grossly positive. Finally this summer I was sent to a rheumatologist who after more testing diagnosed me with “A Lupus like autoimmune disorder” but has proceded to treat me with lupus meds. Prednisone, plaquenil and imuran. Which seem to be doing their job And then of course muscle relaxers and NSAIDs to keep the pain down. They don’t work to totally control the pain but i guess I’ll deal. I am frustrated that I keep getting resp infections that go into bronchitis. All they can assume is it is because I have a low immune system. I don’t usually publically admit but I’m a nurse. And dealing with the daily pain and infection is really wearing on me. There are days when I can barely get out of bed. But after reading the stories posted here.I have hope that things will get better. I am pray that they get better!!! Thanks for reading my long story. And thanks for this website in general providing hope and support to all if us!! And I apologize for any typos or grammar issues. I worked all say and then types it on my phone which is tricky!!! NEGU!!!!

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