My Lupus Story

There are millions of people around the world with a Lupus story. This is mine, not more or less significant, just mine.

After struggling for many years with aches and pains and weird stuff going on, these symptoms began to get worse and worse to a point that they were interfering with daily activities. My family doctor had always written them off to a direct correlation with my mental health. Now there was an increase in symptoms and some that didn't really fit with mental health issues. It was time to see a specialist. My family doctor referred me to a Rheumatologist with the suspicion that I had Fibromyalgia. I took all my documentation with me and a list of symptoms and some pictures of my sun sensitivity rashes. I expected to leave his office with a diagnosis of Fibromyalgia and maybe a prescription for pain management. To my surprise after examining me he said I definitely did not have Fibro and he thought my symptoms were much more descriptive of Lupus in addition to two positive ANA blood tests (which are indicative but not specific to Lupus SLE).

On to further testing. They took lots of blood and set up an appointment to follow up a month later. Back to Barrie I go for the results. Of course now I am expecting a diagnosis of Lupus. When I left the month before he was 99.9% sure all my blood tests would come back positive for Lupus. Surprise again, the only test that came back positive was the ANA again (now 3 positive ANA's). His explanation? I must not be in an active phase of the disease so my blood tests are negative but he is still 99.9% convinced that it is Lupus; however, he cannot legally diagnose that without positive blood work so he diagnosed me with a non specific connective tissue disease on paper. I meet the criteria for diagnosis in every way except positive blood tests. Verbally, he told me I have Lupus and we are going to treat it symptomatically as Lupus. If and when they get worse I have to go back to him for further testing and evaluation. He gave me a prescription for a pain medication and I left.

I was confused. How can I have Lupus without testing positive for it. So I did some research and apparently this is very common in Lupus patients who have early signs or mild symptoms. It is difficult to know when I am in a flare or not. Some days my symptoms are worse than others but does that constitute a flare? When I go to Cuba or sit in the sun at home I get wicked rashes and very sick, is that a flare? When I drink alcohol with sulphites I get a crazy rash. My face has a mild rash all the time that is disguised by foundation easily for now and I wear sunscreen every day. I always have symptoms so how do I know when to go back?

So I am starting to pay more attention to symptoms each day and document them. They say it sometimes takes years to get a clinical diagnosis of Lupus. Many people live with it for years and are treated for it without a "diagnosis on paper". I did more research on effects of the sun in Lupus and can now directly relate my infection in Cuba last year and my infection last May that hospitalized me to the sun. Cuba this year will be very different; no tanning bed before and sunscreen all over, hats and shade.

This leaves me wondering if the current illness I am experiencing is not only mental health but a combination of that and Lupus because I am really not getting better. I have days that I feel great and days that I feel totally exhausted. My ability to focus and organize has not changed. The brain fog just picks its days to appear and disappear.

My hope is to return to work soon because I feel like its time. I have been working with two therapists and my doctor for almost 6 months and its time to get back to life. I am not sure this will be possible because my mental function has not improved. My mood has, my comprehension of my past has, my outlook on life has but my physical and mental functions have not. Is this mental health or Lupus? I don't know. Maybe its time to go back to the Rheumatologist or get another one who specializes in Lupus.

The important thing is, diagnosis or not, I am not letting it stop me from making my life meaningful. I am going with the flow, accepting things as they are, taking my medications, doing my therapy and putting my faith in God to lead me through. Exercise is very important to me so I make sure I have the energy for that every day which sometimes means that I lay down most of the day so that I can do it. The other day I ran 4 km and then slept the rest of the day.....maybe not a great idea but it was worth it to feel great after a run. Yesterday I was supposed to go to Barrie to go wedding dress shopping with my step daughter and I had to back out because by the time I got to Parry Sound and made a few stops I was exhausted. I still needed to grocery shop, go to Walmart, drop off a package, pick up my daughter and then drive to Barrie, shop and drive back home, make dinner, exercise etc? Just wasn't happening. I finished my chores in town, apologized to my step daughter and went home for a nap before dinner. I really struggled to push myself to exercise last night but I did it, had a Jacuzzi, read a bit and went to bed. I just have to play each day by ear. How do you work like that?

I know that when I return to work sitting all day is going to make my joints and muscles worse, the lighting in the office affects my skin (it burns all day long), typing is difficult with the pain in my hands, the list could go on but this is not about whining. This is about finding a way to cope and make life as normal as possible making adjustments as I go. So I will work with my therapist to see what kind of adjustments I need to make to be able to make work life doable. I am lucky that I will have my long term disability to back me up when I have days that I cannot go to work.

I am finding all the positives in this negative. Having a disease is not easy but I can't change it. It will never go away and in combination with my mental health diagnoses it's that much more difficult to figure out. Looking at it as something that restricts me is not an option to me. I am accepting of the fact that I have these diagnoses but I am not accepting of what the expectations of them are. I am not going to sit back expecting all of the multitude of symptoms to slowly appear and dwindle my abilities. I am fighting each symptom as they appear and finding a way to work around it to make life meaningful.

I had this notion in my head that life is not meaningful unless I am working. I realized with the help of my therapist that living every day happy and healthy with a good attitude makes life meaningful. Being at home, being a stay at home mom is meaningful, it's important and until I can get back to work it is exactly where I need to be.

So there's my story. Lupus or not lupus, that is the question. Although my family doctor is adamant that he does not believe it is, the specialist is 99.9% sure and believes that if we can catch a flare my blood will test positive. Regardless, I know what I have been told and I am dealing with it as it comes, I don't need a positive blood test to confirm that I need to modify and take medication, I just do what I need to do. I pay attention to all my body functions and will go back to see the specialist when I feel it is getting worse. Until then I am just living each day as it happens and trusting that God knows best. Everyday is still a good day!