Last year I asked for volunteers to do an interview with me on what their life is like living with autoimmune disorders. Kimberly stepped out and is the first person to participate in this interview.
Living with autoimmune disorders/diseases can be very difficult and challenging. We may share the same symptoms, but they can affect us differently. It can be encouraging knowing that we are not alone.
My goal for this interview is to help those of you who have been newly diagnosed with an autoimmune disorder and you don’t know where to turn or what to do next. Also, it is for those of you who have been living with autoimmune and you may feel alone. This blog is to let you know you are not alone and I have a great group of ladies in my Facebook group that encourage each other.
Brenda: Tell us your name and where you are from?
Kimberly: My name is Kimberly Leon and I am from Southern, California.
Brenda: What autoimmune disorder have you been diagnosed with and how long have you been living with them?
Kimberly: I have been diagnosed with Sjogren’s syndrome, fibromyalgia, Lupus and Connective tissue disease. I had to give up on further testing because I lost covered medical coverage and can’t afford further testing out of pocket.
Brenda: What symptoms prompted your doctor to move toward an autoimmune diagnosis?
Kimberly: My diagnosis came up by accident while I was being tested for other things after being exposed to pesticides and insecticides while working in May of 2017.
Brenda: How did you feel when you got the diagnosis that you have an autoimmune disorder and that there aren’t any cures?
Kimberly: I feel angry and have a deep numbness of hate inside, if that makes sense.
Brenda: Tell us about one of your worst flares.
Kimberly: I am still learning what a flare is for me but I believe it was a few months ago when I stopped all my medications on my own. I was mad at the side effects and being a zombie and I ended up with pain, rashes, fevers, itching and migraines. I swelled everywhere and couldn’t function.
Brenda: What medications has your doctor prescribed, and did they help?
Kimberly: I have been on steroids, plaquenil, cymbalta, nerve medications, pain medications, eye drops, mouth washes, muscle relaxers, sleeping pills, CBD oils, vitamins and allergy medications. Nothing seems to help 100%. I have learned to deal with the pain and discomfort.
Brenda: Did you try changing your diet to help relieve your flares and symptoms?
Kimberly: I have learned what I can have and what I cannot have by seeing reactions I have and how my body does with stuff. Some days I can have something and then the next day I have to cut it out. Right now I am at a Vegan level and organic foods.
Brenda: How did your family members react when you told them the news and are they supportive?
Kimberly: My husband and I are alone and he tries to support me as best as he can. I am dealing with a huge workman’s comp case on top of all of this, so doctors believe that all my health issues were pushed along with the exposure. We are bummed but doing the best we can.
Brenda: If there was one thing that you would want someone to know about a particular autoimmune disorder that you have been living with, what would it be?
Kimberly: If there was one thing I can say it is that doctors don’t know more about your health issues more than you do. Nobody’s immune system is wired the exact same so what effects one person may effect someone else complete opposite. One health issue or a million health issues have different reactions for everyone. There is NO textbook for these diseases or however you want to word them. Fight and speak up because you are your own advocate.
Fight and speak up because you are your own advocate. ~ Kimberly
I first interviewed Kimberly in October of last year. Since then there have been a few updates to her story.
Kimberly: I now have been diagnosed with severe anxiety and Raynaud’s. I have been put on anxiety medication, sleeping pills, daily allergy medication, blood pressure medication for the Raynaud’s and medications for my liver also. I believe I am taking a total of 19 pills a day and several vitamins. My rheumatologist is trying to put me on methotrexate but I am not willing to go that route at the moment.
I finally went to a functional medicine practitioner who has been researching autoimmune diseases and they said I have what’s called “Toxins Induced Autoimmune Diseases”. The exposure to the pesticides and insecticides has exasperated the autoimmune diseases I have as well as the rest of my health issues. At the moment, with me having a ongoing workers compensation case and the onset of all of my health issues being said to be the cause of my exposure, the doctors from the functional medicine clinic won’t be able to see me due to the fact is they can’t treat me while I have an open case.
I feel very closed off and isolated at the moment because I deserve to be able to get treatment from medical professionals who have taken their time and invested their hearts in wanting to help those of us who have tried nearly every single medicine and have had no relief or been able to get remission. That is their goal. Someday I hope to be able to be treated by these doctors but that’s not able to happen at the moment.
I am on a full plant based diet with no dairy, meats or carbs. I cannot handle anything processed either.
I am 85% in a wheelchair now. My body isn’t strong enough to support me. My knees will give out and for some unknown reason my limbs go numb.
I would like to say “Thank You” to Kimberly for sharing her story with us. I will post updates on her progress in the future.
Functional Medical Practitioner: Functional Medicine addresses the underlying causes of disease, using a systems-oriented approach and engaging both patient and practitioner in a therapeutic partnership. It is an evolution in the practice of medicine that better addresses the healthcare needs of the 21st century.
Role of the Treating Doctor in Your Workers’ Compensation Case: read more
One more thing… please consider joining my Facebook group: “Autoimmune Disorders” if you are living with autoimmune disorders and you are looking for encouragement and support.