I remember being called lazy after I was 7 years old. Before I never heard that word except to know what it meant. It was never used to describe me. 2 things happened around the time I turned 7. We moved from San Diego County to Riverside County. My Mom met her ex who I called step dad for about 20 years. I don’t remember being called lazy at the place we first lived in when we moved counties. Not until my Moms ex moved in. For some reason he thought I was being lazy. I don’t remember being lazy. My mind was going a mile a minute & I was always made to go outside to play because we finally had a yard & kids need to experience that sort of stuff (which I agree with). Until I moved out he always called me lazy. Maybe not using the word lazy but synonyms & examples on how I was being lazy where quietly made by him. I found out 10 years ago I wasn’t a lazy child. I did things no child should have to do. I survived the attempted murder of the sun.
10 years ago I found out I had Lupus. I had a horrible doctor who thought everything could be cured by loosing weight. I got to researching Lupus and decided I should have a blood test done for it. I took in a check list of Lupus symptoms and he finally realized I wasn’t just wanting attention or whatever he thought of me – that I had actually looked into the possibility I had Lupus. Now before you get going I know there is no definite test for Lupus and the blood tests they do aren’t always showing what they are looking for to say you have Lupus. However luck was with me. He ran a blood sedimentaion test (I think that is what it is called) and it was high. I was told it was a possibility I had Lupus and I needed to see a Rheumatologist. I found out that the doctor that was with the doctor I was seeing made her own practice and I moved to her office before I could see the rheumatologist. She was leary about going forward with what the old doctor wanted to do but she did because I had done my research and had proof something was going on that shouldn’t be going on. Low and behold I start seeing the rheumatologist. I took him 8 years to finally add on Lupus to my list of things wrong with me that he could treat. My doctor didn’t understand why the rheumatologist never said I had Lupus when it was obvious even to a random person who knew what Lupus was I had it.
Knowing what I know about Lupus and what is called flares I realize I was not a lazy child. I just had the symptom of photo-sensitivity. 2/3 of people with Lupus will have a sensitivity to sun and UV rays. Yes I know sun & UV rays are basically the same thing. You have to look at it differently as some light bulbs produce UV rays. This sensitivity is called Photo-sensitivity. Lupus.org has a great article about Lupus & photo-sensitivity here: https://resources.lupus.org/entry/light-shed-on-photo-sensitivity-among-people-with-lupus. There are days even now that even when i go in the shade I sneeze, get a rash, etc – those are really bad days however. More often then not when I go outside I can last about an hour before I start feeling like I’m on fire, my arms get red, my nose starts running, I feel like I’m in an oven (yes I know Southern Cali is hot but not oven hot), and I just feel like I’m running out of energy. I have been tested for a sun allergy and I do not have one so that leaves Lupus. What I am trying to get at is can you imagine as a child how that felt? Of course people would think you are lazy. It is instincts to not be around things that hurt you to that degree.
I tried everything not to go outside or where there was a lot of light when I was a kid. For some reason puberty seemed to stop this for a bit. I only got ‘seasonal allergies’ every time the weather changed so the sun was out more then it normally was (spring & Summer). That was only 12-15 I was like that. Then something happened in my body when I was 15 I guess as I would have a reaction to the sun so bad I slept for days after being out in it all day. I found Nyquil helped a lot with this issue so I always had some. Instead of sleeping for days I would sleep 4-8 hours. This was also before they changed the way Nyquil is made – now it doesn’t do anything for me. To this day if I am in the sun too long (more then a few hours) I will be sick for days after & I will need to pop Benadryl like they are candy. Some days are worse then others. Some days I can be OK with being out a few hours and muster up the energy to stay awake until around 6 p.m. On the bad days I can’t be out more then 30 mins before the symptoms start. The longer I stay out on those days the sooner I fall asleep. I usually end up with my eyes watering so bad people think I am crying, my nose drains so bad, and I can’t really stop coughing. I also end up with welts and a rash that won’t go away for a few days. This is how my childhood was and no one knew what to do but call me lazy. My Mom would take me to doctors but kids where too young to have those sorts of illnesses – whatever they may be.
I ended up having the flu on a weekly basis it seemed. I would always have a really bad case of the ‘flu’ during spring – the time the sun decided to be around more. I had a lot more energy in fall & winter. This still is true – whatever energy I normally have there is a boost to it on days it rains or is cloudy because, well, the sun isn’t really out and the UV rays aren’t so bad. I try to do things I normally put off on those days. There are cloudy days that make me have a really bad reaction to the sun. It is when it rains and the sun is out or when the sun is out right after it rains. I’m thinking the water magnifies the UV rays.
This has been a long post about me rambling about my photo-sensitivity and how it made people think I was a lazy child (and adult – lets face it they thought that too & still do). I want to leave you a link to a Lupus symptom check list https://s3.amazonaws.com/lupusorgnrcl/PDF-documents/GSK-lupus-symptom-checklist.pdf. If you think you have Lupus please go to Lupus.org and research. There are many other sites about Lupus I also suggest researching those sites. There is all sorts of information about Lupus. I always tell people it is my immune system trying to kill me – which it is in the basics of it all.
I know when I started my research I was scared to admit I had somethings on the symptom checklist. It meant that I was weak. It meant I might be crazy and just pretending I had these things. What I feared most was it meant nothing. It is what gave my doctors the push to even begin thinking I possibly could have Lupus. Over the past 10 years I have developed some of the things on the checklist. I will show you what I have on the check list – in hopes that you will be brave enough to fight for a diagnosis – even if it isn’t Lupus.
Lupus Symptom Checklist
|Area Effected||Symptom||Do You Have This?|
|HEART||Rapid and/or irregular heartbeat|
|LUNG||Pain in the chest when deep breathing|
|EYE||Dry eyes||EYE||Eye redness||EYE||ome loss of vision|
|BLOOD||Bleeding and/or bruising easily|
|MUSCLES & BONES||Stiffness in joints|
|SKIN||Sensitivity to sun or light|
|SKIN||Mouth or nose sores|
|BRAIN||Headache and/or dizziness|
|BRAIN||Memory problems or confusion|
|BRAIN||Weakness/numbness on one side|
|KIDNEY||Swelling of legs and/or feet|
|KIDNEY||Frothy and/or bloody urine|
Lupus Symptom Checklist: https://s3.amazonaws.com/lupusorgnrcl/PDF-documents/GSK-lupus-symptom-checklist.pdf