To my family and friends,
Before I was diagnosed with lupus in 2014, my doctor at the time basically told me that I was depressed and getting older and that was why I had what she called “aches & pains”. I was 55 years old. She recommended anti depressants and didn’t think it was necessary to do blood work or x-rays on my right hand, particularly my middle finger which was four times its regular size, painful and I could not bend it. I was feeling depressed and worthless. I had been an avid exerciser, loved riding my horse and then I found it painful to even walk up a flight of stairs. But it was all in my head, right?
So I made an appointment with my naturopath, Dr Ashley Burkman, and she actually listened. She sent me to a rheumatologist, Dr Barbara Kage, and within days of my first appointment with Dr Kage and blood work, I got my Lupus diagnosis.
I wish I could say that once I received my diagnosis, that solved all my problems but of course, it did not. What I had now however, was a team of doctors that could help me. Although there is no cure for lupus there are options and medications to relieve symptoms. I have been on Methotrexate and Orencia injections, Orencia infusions, prednisone, Plaquenil and many supplements from Dr Burkman. I am now on monthly Remicade infusions. This is not a list of all the medications I have been on. Lupus patients present with different symptoms whether it be skin, organs or joints. My issue is with my joints. I also have Rheumatoid Arthritis.
I have to see my cardiologist every six months because lupus can cause damage to my heart. I see my opthamologist every six months because I am on plaquenil and it can cause retinal damage.
I have put on weight that I cannot get rid of. I look at myself in the mirror and do not recognize who I see. I cannot work. I have heard this complaint from other lupus sufferers. I do not grocery shop, I have a delivery service. My husband has partially retired to help me and assist in the joy of having our granddaughter with us when her parents are working.
Please understand, that although it sounds like I am complaining, I am asking that you would hear it as an explanation for what I am going through and ways my doctors are trying to help me. I am asking you to read about lupus and its affect on so many people; patients and their families. Please do not feel it necessary to give advice to us. We have our doctors for that. Please pray for us, give us emotional support and be grateful for every healthy day you have. I used to do anything I wanted, any time I wanted. Now I start my day asking God to give me strength to do even small things.
I am blessed with a supportive family and friends who will help me at a moments notice, whether to just talk to me when I am having a tough day to bringing me dinner or lunch. Sometimes when I am feeling up to it, they take me to lunch to get me out of the house. I thank them all for this from the bottom of my heart.
Right now I have good insurance, which I hear from many lupus patients, they do not have. They are unable to receive certain medications recommended by their doctors because it is not covered by insurance. This is unacceptable! Many of these people have to work and have children and they are in constant pain, not able to receive what they need. Many do not have a good support system.
By walking with us on June 2, 2019 or by giving a donation to End Lupus Now, you will show us all your support and encourage us by standing with us in our fight against this terrible disease.
Thank you all for listening to my story and know that I thank God for each one of you and the roll you have all played in my life.
(Since writing this page, my Remicade infusions have ended and we are now trying Cosentyx to help relieve the symptoms of Psoriatic Arthritis that I have also been diagnosed with)
Again, please join us for the walk and donate to our cause if you can. We appreciate any way you can help.
I’m Walking to End Lupus. Join Me?
Imagine a day when doctors can say, “There is a cure for lupus.” Until that day though, there is work to be done. That’s why I’m taking action in the fight against lupus. Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now® to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus? A generous contribution of $25 or $55 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!