A couple of weeks ago, we talked about mental health issues and invisible diseases. In the previous post, I shared my personal experiences with being on the caregiver side, and how diseases and disorders take a toll not only on the person suffering, but those who care for them.
This touched off some discussion with friends, one of whom suffers with Lupus. She explained that she often gets the “you don’t look sick” comment and how it almost comes out as if they don’t believe she actually is suffering from something that is potentially deadly.
To give some perspective, I asked her to write a post about what she deals with, in the hopes that it might raise awareness.
We had been hiking in Mineral King, Sequoia National Park, on a Tuesday. Nothing unusual, it’s our favorite place to go for hiking and relaxing. I woke up early Wednesday morning because my shoulder was itching like crazy. I shook my husband awake and asked him if I had another spider bite or something. He said my entire shoulder area was covered in small red bumps – for that matter so was every other joint on my body. Just the joints – knees, ankles, hips, wrists, etc.
And thus, it began.
The pharmacist told me to get to a doctor, the doctor told me he had never seen anything quite like it. We decided to watch and wait. It didn’t take long. By evening the rash was everywhere, and by the next day my body looked like the comic book character “Thing” from the Fantastic Four. My hands were unrecognizable – I had cauliflower like distortions all over – even the bottoms of my feet. After another round with the local dr. I ended up at the dermatologist, who was just as baffled. She ran numerous tests, biopsies etc., gave me meds and sent me home to, once again, wait. By Friday, I couldn’t walk – the arthritis was so painful, and my joints were so swollen. My kidneys were swollen, and I had a migraine that I will never, ever forget – and never want to experience again.
This was the beginning of a very long journey. Because my liver enzymes were elevated and the rash had spread to my mouth & throat and everywhere imaginable – again, except my face – I was hospitalized. Intravenous Prednisone, antibiotics and fluids saved my life. I am sure of it.
I was sent to 14 specialists in California’s Central Valley. I was first diagnosed with Hepatitis C, then Rheumatoid Arthritis, then Fibromyalgia, then Lyme Disease, back to RA… it went on and on. The initial flare wore off and I was able to get back to teaching, but within a month I was back on the Prednisone, only this time, it didn’t work until they doubled the dosage. In the meantime I had been doing my own research, and I was pretty sure that I was dealing with Lupus.
The first Rheumatologist I saw told me that it was stress, and that I was causing this to happen thru my poor psychological health. How you can look at someone in the condition I was in and seriously say something like that is beyond me. We left and never saw him again.
About 18 months after this all began I was able to get an appointment at Sansum Clinic in Santa Barbara. Two days, six doctors and dozens of tests later I was introduced to Dr Timothy Speigel. He spent almost 2 hours with us, examining me, talking with me, going over test results and then telling me what I pretty much already knew – he suspected Lupus, but the test, again, was negative. He wanted me to see Dr. Wallace at UCLA, the nation’s leading expert on Lupus.
Dr Wallace was amazing. He ran tests that no one else thought of (which still amazes me). And although my ANA was still negative, every other test pointed to Lupus. Most importantly, Dr Speigel and Dr Wallace knew that none of the tests for Lupus are truly accurate. The only way to accurately diagnose this disease is thru evaluation of symptoms, patient history and medical tests combined. I finally had a diagnosis, which was a relief, because it helps to know what you are fighting.
That was 16 years ago – and it took almost 3 years to diagnose me. Sadly, my story is not unusual – the average person diagnosed with Lupus has been going thru the same circus I experienced for at least 3 years, many much longer. There are more people, in the US alone, suffering from Lupus, than those suffering with AIDS, Diabetes and Cancer – combined! Yet this year we will see the first release of a new medicine for this disease in over 50 years. Treatment is better, and the diagnosis of Lupus isn’t always a death sentence anymore – but 50 years?
In 16 years I have experienced: Liver involvement, skin involvement, hair loss, neurological involvement (migraines, lupus fog, memory loss), lung involvement, constant pain, (muscle and joint), fatigue and secondary heart involvement. I have left ventricular hypertrophy, which is something athletes can get from over stressing their heart, but because the disease has taken such a huge toll on my body, my heart is working that much harder, thus the LVH. I can’t be in the sun, at all. Just driving the 40 minutes to Visalia will cause me to break out in a rash on any area exposed to the sun.
I had a hysterectomy at the age of 35 – and it was then, as we were reviewing my medical records, that we discovered I have most likely had Lupus since I was about 14 years old.
Lupus is hereditary in the sense that we can pass on a gene that will pre-disposed us to the disease. It takes a trigger, or a stressor to bring the disease to life. For me, it was sulpha-based antibiotics that triggered the “big flare”. Lupus, simply put, is a disease in which the immune system attacks normal, healthy organs and tissue. You would think that I would be super immune to every flu or cold that comes along, but actually, I catch them more easily, and then my immune system doesn’t attack the virus, it attacks my own body. I have become a true germaphobe!
I have been on Prednisone, off and on, since the beginning. I hate it! It makes people gain weight, bloat up and feel “cloudy”. Other meds included Plaquinil, which gave me seizures, and Methotrexate, a chemotherapy drug, which caused major hair loss, I even lost my eyelashes and eyebrows! Anyone who knows me, knows that I am a vain person. It’s OK, I admit it! These so called treatments were just that much worse because of what they do to our self image.
Lupus is considered a silent disease because you can’t normally see how it is attacking the body. Unless you watch me, you can’t tell that I am hurting. Lupus patients become experts at hiding how they feel. We have to play the game and try to fool ourselves so that we can get up and live our lives everyday. You can’t see a person’s kidneys or liver being damaged. Depression is huge – dealing with pain and the constant desire to rest/sleep is a real drag on happiness.
Exercise is important and it helps, but the catch is that we sure don’t feel like exercising! I have found which foods I can and can’t eat – and I stay away from anything with MSG and genetically modified foods. The minute I think I have this thing beat, I will experience a flare. Something as simple as going to the dentist to get my teeth cleaned causes a flare.
BUT, the key here is that we have a choice – we can choose to give in and let the disease define us, or we can choose to take it one day at a time. We have to listen to our bodies, rest when needed and not give up. It’s easy to feel sorry for ourselves, but that’s a choice too. Everyone has something they are dealing with, whether physical or emotional or stress related – this disease has really opened my eyes and thru the continual process of learning to live with it I have learned a few things.
- My problems are not any bigger or any worse than anyone else’s.
- We need to remember that people need kindness, because we don’t know what they are facing day in and day out.
- Feeling sorry for myself will not make this disease go away.
- Talking about it, to spread awareness, is important. Knowledge truly is power. And maybe, just maybe, we can make a difference.
- A wonderful doctor told me it’s ok to complain. That it gets the emotional part out and helps us to get on with our day. We just can’t wallow – there is a huge difference.
These diseases take their toll on everyone, but the sufferer is the one who has to deal with the reality every moment.
A big thanks to Elizabeth Lamar for sharing her story. Elizabeth is the Program manager at CLIPArts, a non-profit in Central California that work to bring the arts to children in low income families. She’s also been my friend for 30 years.