Category: Personal

It’s Been A Long Few Weeks

These past few weeks have been long for me. I have slept most of the past 2 weeks. If you don’t know I have the photosensitivity side effect of Lupus. if I am in the sun it makes me tired enough to take very long naps. It’s usually the morning sun that gets to me. It hasn’t been this bad in almost a year. It was especially bad last week when I went out at around 7am to do laundry & got home around 10. I slept all day & that night & most of the next day. There is more to it then sleeping. I’m just glad I slept through most of the other parts of what happens when i’m in the sun.

This has made it so I can’t read & do book reviews. Today is the first day I haven’t been out in the sun for a few days so I am hoping I can stay awake today. I got up & decided to try to stay up. So far so good. I have 3 books on netgalley.com to read & review. I will get to that. I feel bad because I like to read books & review them. It is fun. I haven’t even been able to read fanfiction. Before you mention it – yes I was up enough to knit. I told Grace I would make her gloves for her work & I thought it was more important then reading. They where sent off to her yesterday. I also haven’t posted the FO post I said I would do every other month. If I can stay up today I will get that out too. I don’t think I have many things to show but I will keep that up.

If you really want to know how bad it is I haven’t been able to play WOW much. I log on & just fall asleep at my desk. This is the longest I have been up where I could fall asleep & not fallen asleep.

Mom: If you read this I am still going places with you in the morning. I don’t mind. The only time I venture out in public is when I go with you. Even if I just sit in the car while you do your stuff I still want to go. And we need to do laundry still – just maybe not when they open.

Things Need To Be Done!

I am a bit overwhelmed right now. I have many things to do. I have 6 book reviews to do which means I need to read 6 books. This is not normally a problem. This leads to another thing – photosensitivity. Yesterday I finally crashed. I slept around 20 hours yesterday because of the sun. In a previous blog post I discussed all that goes with my sun issue so i won’t repeat myself here. Then Robert broke my tablet last week. I had to order a new one from Dell. I got a Samsung Galaxy Tab A. yes i know it’s not the best but it suits my needs as I only really read on it. I had issues with NetGalley too. The issues with the book downloads are supposed to be fixed so when I can stay up longer then a few hours at a time and I have time I will retry to get the books to work so I can review them. As well as all that I stated Orencia last Tuesday. It has already started working. usually when meds start working right away they don’t last long. I’m hoping they do. I didn’t realize how much I stopped doing things (using my hands) until this past week. If my flare lasts the rest of the week I will have no choice to call the Rheumatologist and get steroids. Not exactly what I want to do. he may also think it was brought on by the Orencia & I may have to stop taking it. One good thing about this hellish week is I am on part 4 of the Arizona CAL – I was on part 2 last week. I will get caught up.

I will get everything caught up & going back to how I had it soonish. A week or two.

I Wasn’t A Lazy Child

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 chest pain
HEART Difficulty breathing
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
BLOOD Infections
MUSCLES Muscles weakness
MUSCLES & BONES Stiffness in joints
MUSCLES Aching muscles
SKIN Skin rashes
SKIN Sensitivity to sun or light
SKIN Mouth or nose sores
SKIN Hair loss
BRAIN Seizures
BRAIN Headache and/or dizziness
BRAIN Memory problems or confusion
BRAIN Sad thoughts
BRAIN Weakness/numbness on one side
KIDNEY Swelling of legs and/or feet
KIDNEY Frothy and/or bloody urine
GENERAL Fatigue
GENERAL Fevers
GENERAL Weght change
GENERAL Poor appetite

Lupus Symptom Checklist: https://s3.amazonaws.com/lupusorgnrcl/PDF-documents/GSK-lupus-symptom-checklist.pdf

Have You Ever Had?

Have you ever had a song that desribes you perfectly? You end up listening to it repeatedly – or what seems repeatedly. Yeah repeatedly as the people around you know it and they aren’t fond of that music…

Well I have found one such song. It’s recently released. I only listened to it as it was a Jonathan Davis song. I love all things Jonathan Davis/KoRN. This song seems to get me. I have no other explanation for the feeling I get when I hear it. The first few times I heard it I nearly cried.

I normally don’t post videos on my site or anyhting of the sort. I felt I needed to because a link to the video just wouldn’t cut it.

The link to the YouTube video page is https://www.youtube.com/watch?v=pSABKRTtJM8