Wow

A couple of months ago a friend sent me a news article on engery saving lights & Lupus. Apparently these new energy saving lights can cause lupus flares. I was skeptic at first, because how can a light affect my lupus flares. So I thought it couldn’t hurt to change the light bulb in my night stand maybe it will help me feel better- that and I was/desperate. The change was immediate, but I could tell that my evenings were getting better.

I then overheard our facilities director say that the lights in our office were the same energy saving lights. So I asked to have the lights above my head removed- plus I like working in the dark. I didn’t really think twice about the light issue until this morning.

Last week I was moved to a different area temporarily while they worked on my desk. I was shocked at how sick I was. Work tired me out and just walking took all my energy. Again, I didn’t even think to make the connection until today. I moved back into my cube yesterday and I have noticed that I am starting to improve. I am not as shaky as I was and my body is slowly building strength and energy. So I am no longer skeptic about the lights. Sure, it could be just coincidence but I don’t think so.

Today was an interesting day- and it’s only 10:00 AM!!!!!!!

Let me start by telling you of last night. When we got home from work I had to go to the store for my medications & David had to take Josiah to t-ball practice. So off we went. When I got home I popped dinner in the oven and sat down at my quilting project, I slowly worked on it so I could be up when Josiah & David did and see them for a few minutes. After an hour & dinner I climbed into bed at 6:30- barely able to hold my body up much longer.

So this morning getting up took all my strength. The worst part is I slept so well (thanks again to a heated mattress pad!!). All the way to work I felt my body want to give in. I couldn’t hold my eyes open so once again I slept while David drove.

As I walked to my desk I felt that it took all my energy from collapsing. It is the weirdest feeling in the world. I feel that if I just relax my legs will become jello and I will fall over and sleep. So I got out a Rock Star- my new addiction (energy drinks). They normally work really well, but today they have made me extremely shaky. My body has gone on strike once again.
So I came here, to vent once again and I felt SOOOO incredibly blessed by the two comments on my last post. I don’t know how you guys found me but thank you sooooooooo much!!!!

Exhaustion

Boy oh boy. Life just seems to be flying by and I feel like I am either in the throws of it running to keep up or crawling into bed to recover from keeping up. The exhaustion I have been feeling lately is AMAZING. How do people survive? I feel like a walking zombie all the time. Monday’s suck because I have spent the weekend napping off and on, so Monday comes and there is no time for a nap. So I try sugar and caffeine to keep myself alive but by 4:30 I am dead to the world. I know that only makes the evening worse, but I can’t keep awake throughout the day. The main frustration is that I have things I want to do, things around my house, cleaning, quilting, cooking, grocery shopping. I just wish there was a way to complete all these things. Saturday morning I did the dishes and I had to lay down- what is that about?
So if anyone has ideas on how to live a “normal” life and deal with all this excessive crap I would LOVE to hear them. I hate laying down to this disease, I refuse to let it get the best of my, but I am starting to get overwhelmed.

What word describes you?

Two people used a word on me this morning and it made me laugh, not because it was a funny word, but because it is a really good word to describe me.

Irrational (Adjective) ir-ra-tion-al: Lacking in reason or logic, unable to think logically, lacking the normal ability to think clearly

It was funny because it was used in two different ways, about two different topics, both of which I am insanely passionate about (Sometimes too passionate). And a lot of the times I get irrational and act without thinking. Huh, I think I should learn to control that, will that ever happen?

So what makes you irrational?

Life is too much fun!!

After writing the last post I got a call from my doctor’s office. She told me I needed to take a couple of days off and just rest. The steroid treatment wasn’t working and I was starting to get worse. So I went home at 12:00 and slept all afternoon, then Tuesday came around and I had to take Alex to the walk in clinic to have his ankle looked at (No worries, just sprained). After I took him to school I ran to the store to get some laundry soap. By the time I got home I was so exhausted I crashed until 2:30. I can’t remember being so tired.
Wednesday came a little too fast. David told me to go get my nails done and hopefully relax. I could hardly keep my eyes open the entire time. It was bad. As I was leaving my mom called me, upset, and asked me to come to the vet’s office. So off I went. Apparently her 14 year old cat broke 4 of the bones in her paw. So 2 hours later I was heading home. Another night were I CRASHED and hard.

I spent most of the night trying to breathe, a new symptom to me. I called the doctor’s office first thing in the morning and was squeezed in. Because I was so light headed and my eyes were still “shaky” I decided to have my parents take me.

After I met with the doctor she said I should go to the ER since they didn’t have the machines that were needed to test for a bunch of different things- including a blood clot in my lung.

After 4 hours the doctor told me it was pluresy and it was pass. I was a little disappointed, especially since he didn’t even touch me until after he diagnosis me- then he listened to my lungs. It is SOOOOOO frustrating!! They see “lupus” or “Fibro” and they instantly dismiss everything to it. I trust his diagnosis only because my lunch x-ray & blood test turned out ok, so what else could it be.
Still it is SOOOOO frustrating.

So blessed

I feel so blessed. When I was diagnosed with fibromyalgia I was scared, I didn’t want another “label” to slow me down. So I started reading up on it and the more I read the more I was baffled as to why it took so long for someone to tell me I had it. So today I have been focused on how blessed I am to have this “label”.

There are things I have learned that I would like to share. First off, I wasn’t diagnosed because I would complain about some symptoms to my PCP thinking it wasn’t lupus related and when he told me it was I didn’t bother running to my other doctor because I refused the steroid treatment and I didn’t want to be told that this was the only way.

What are some of these symptoms? Well let me share them with you, because I am STILL baffled that these symptoms are all related to fibro. First, the ringing in my ears. Second, the sensory overload- this is a huge one for me. I freak out when I have been in a large crowd for a while our even a small group. I just need to get away- hide in the bathroom for just a couple of minutes, breathe relax. Noise bugs me a lot, my mind can’t focus on things especially when there is a lot of background noise. I used to think I had bad hearing, but no, it’s a sensory overload. And when I don’t have the break I really do a downward spiral and I can’t control myself. The other symptoms were a little different. I have been complaining a LOT about my hips, but all the tests, xrays & MRI’s didn’t show any sign of arthritis or anything else. Well come to find out that lower part of my pack is a pressure point. It is amazing all the pressure points I have been having issues with but complaining that it is something else. And then there is the sleep issue. I don’t sleep well at ALL, which lowers my pain tolerance & increases my exhaustion. So when I Started taking Lyrica I was blessed more than anything by the sleep!!! Yahoo!!!

So today I feel INCREDIBLY blessed today, if my body could handle it I would jump up in down. Even though I am in a flair I am SOOOOOO blessed. God is so GOOD!!!!