Rambling… Just Because I Can

I’m bored. Actually I’m tired and can’t seem to do anything but sit here thinking about how bored I am. I went outside for a little while and of course it starts to drizzle (only to stop when I go back inside the house to seek shelter). Creatures… creepy, crawly, slimy creatures abound here. When I first moved home certain facts that I should have been prepared for were almost like new discoveries for me since I had been gone for so long. I remembered the sunny days filled with laughter spent at the beach; gorgeous rainbows that painted the sky that was gloomy just a few moments before; and long hikes to the top of the mountain or to a waterfall. I forgot about the mosquitos and “mosquito punks;” demon toads that wanted to touch my feet or jump and grab onto my ankles; flying roaches (which thank goodness I haven’t seen yet); geckos; snails; centipedes; spider webs; and of course spiders (especially Cane Spiders).

The other day I saw a disturbing site and had to take a photo of it. I won’t tell you what I called it but here you go (you’re welcome). 😉

Lizards the size of dinosaurs... ok, so I exaggerate

Lizards the size of dinosaurs… ok, so I exaggerate

Mutant Lizards

Mutant Lizards

I made the lizard angry.

I made the lizard angry.


I’ve noticed many “mutant” lizards recently so it must be “Lizard Season” or at least maybe mating season. I saw that same “Alpha Male” lizard yesterday when I went outside, I recognized him by that unique and ugly tail of his that looks like it’s growing back after having lost it. So the only proper thing to do was to name him. I told my mom that I named him Igor (pronounced “eye-gore”). My mom kept correcting me that the pronunciation was “e-gore” (long e). I told her I was the one that named the lizard and it’s “eye-gore.”‘ She knows better than to play argue with me because she knows most of the things that I say are nonsense anyway and don’t matter.

Today while I was outside in the drizzling pre-rain, I saw a giant snail. Well it looked like a medium sized snail. Again, I had to photograph it.

Mr Snail

Mr Snail

I'm sexy and I know it.

I’m sexy and I know it.











Garden creatures abound everywhere. They surround me. They force me to use my flash light when I leave the house at night to eliminate the possibility of us having any physical contact whatsoever. I find a safe place to sit outside and look up into the night sky filled with stars and planets. It’s quite peaceful until it’s time to go back into the house and I have to turn my flashlight settings back on my phone so I can return “safely” indoors.

When I first moved back home it wasn’t long before I was covered by mosquito bites. I could go outside for a minute or two and come back covered with 5-7 bites. I said it was because I was like “fresh blood” since I was on the mainland for so long. I recently noticed that I haven’t been getting bites for a while so either: 1) It’s not “Mosquito Season” yet; or 2) They don’t like my meds.

And because I am kind and do not want to leave images of slithering, brown, garden grossness, I’ll post one last photograph. 🙂




What is that?!

What is that?!

Last week I felt like putting on some make up, spiking my hair, and drawing a fake smile on my face with an eyeliner pencil. I thought it was amusing and after I was finished (even though the spikes didn’t come out the way that I wanted), I sat in front of my mom who was watching a show on her tablet until she looked up at me and just shook her head. A little while later I went outside to talk to a friend on the phone and had a strange feeling like people were looking at me (the street was busier than usual) and then it occurred to me that I didn’t wipe that “smile” off my face and my hair was… well, you see it. 🙂 I placed my friend on speaker phone so I could take a photo of something I usually would be embarrassed about but frankly didn’t care. So this is my “chicken hair/ permanent fake smile” photo.


Random Thought of the Day- 16 April 2014

I can’t wait until the day that I wake up, look in the mirror, and see myself again.

A Good Day after Work

There I am!

Go Fly a Kite

Go Fly a Kite

Ok I will! 🙂 I haven’t flown a kite since I was a kid. I know I must’ve done it because I remember having a Donald Duck kite. It was incredibly fun! It was peaceful and calm. My new thing will be to “go fly a kite!” anytime I’m stressed out or sad. 🙂


An Okay Day

Aside from everything that ails me daily, I had an okay day because I had a little more energy than I did yesterday. Some members of my family went to my favorite shave ice stand, I was able to help my Aunty & Uncle who recently moved back to the island sort through their belongings now that their things arrived via freight, & I completed three errands. Doesn’t sound like much but it’s the most I have been able to do in a long time. And I’m happy that my pain medication hasn’t made me sleepy. I’m tired of the insomnia and being exhausted on a daily basis for weeks now/ maybe months. Time flies by. Sometimes I don’t even know what day it is. And I was embarrassed at the pharmacy because I apparently forgot that I was there last week & already picked up the medication that I thought I was out of. There’s just so many of them I don’t even know them all by name. I want to just assign letters or numbers to them but I guess it doesn’t work that way. I get to wear a new pajama (with a skirt at the bottom) that my Aunty L got for me as well as some Harley Davidson swatches that were pretty cool. She always gives me the best gifts. The theme of the pj is a girlie Batman. She said she couldn’t find Wonder Woman but I still love it. I’ll be the first to admit that I will never “grow up” and I don’t care, I’ve accepted it. 🙂 I had also hoped to buy a larger flat screen tv but knew it would be a while, maybe even a year before I could do that. I was surprised & more than grateful when my Uncle & Aunty who just moved back from California gave me one that they weren’t going to use. I have that up & running. Today I bought a DVD player so I could at least watch movies in my room at night when I can’t sleep. I don’t have cable in my room but I rarely watch tv so that’s not a bad thing. And Mia is snuggling with me tonight. I think she likes that she doesn’t have to sleep in the livingroom into the wee hours in the morning while I tinker away at whatever I have chosen to preoccupy my time until I get bored & start something new. For pain

I’ve found that Salon Pas patches work okay on certain types of pain whether joints, muscles, neck, back, wherever. It at least alleviates the pain a little, to me it’s better than nothing but I’m sure you may know of something that works even better. Oh, and peppermint (the essential oil) helps more of the minor headaches. Not the, “I want to bash my head on the concrete wall” headaches. You may want to talk to your doctor first and also make sure you’re not allergic to it. If you do have any suggestions, please let me know. I really do not like toads. They creep me out A LOT! Usually when I walk outside in the dark I will use a flashlight but I haven’t seen many toads and I was only several feet from the house. I felt a thud on the tip of my slipper & got a little freaked out because of the possibility that I just kicked a toad in the butt with slippers on! So technically I could have touched it with my bare foot! I cringe at the thought. So I turned around and saw a toad just sitting there. I ran to the house, as I gross shuddered. Toads for one thing are brown & bumpy. Tree frogs however are more aesthetically pleasing with their vibrant  green and red coloring as well as their cute fingers. But I believe my main problem with toads stem from my childhood. One day after school I was walking around the garden & stepped in a hole. I looked down and was just about to remove my foot from the hole & go on my merry way when all of a sudden a toad jumped right on top of my foot! I panicked, I screamed, it got worse when I lifted my foot to shake it side to side to get it off of me. He must have had a phenomenal grip because he wouldn’t let go. My heart raced faster as I watched the toad hold on and thought he would never let go. When I finally managed to get the toad off of me, I ran, still shaking my foot. I felt traumatized. 🙂 I could still feel the sensation of the toad holding onto my foot and had a succession of involuntary “gross shudders.” Ewwww.

Down Syndrome Awareness Day

I wore mismatched socks for Down Syndrome Awareness Day. I was disappointed that I couldn’t be at work and was still at home sick but wanted to show my support.

Yesterday’s Misadventure

Taking a break from cycling.

Taking a break from cycling.

Lovely Life

After yoga break on the way home.

Yesterday was quite an eventful, yet uneventful day. I had my post hospital visit in the morning and caught a ride into town with my mom so we left early as she had to be at her function earlier than my appointment which worked out since I had some medical errands to do at the hospital while I was there and wanted to see a couple of co-workers who I now call friends. To put such a label on someone has always been difficult for me as I have had bad experiences with “friends” who have betrayed me in some way in the past but these women are awesome. Very uplifting, similar sense of humor, always a pleasure to be around. I miss them a lot. They always come to visit me while I’m in the hospital and make me feel like they really care when others who I would think would “be there” for me in some way, even to just visit while I’m in the hospital or “jail” as I now like to call it never show up. It was a productive day of sorts but of course with visiting, I didn’t have time to complete everything I set out to do but socializing was more important at that point and I can always do the other things by phone or on Monday when I need to go back to pick up a prescription that wasn’t ordered. Since I don’t get out much and don’t see people other than my mom and step father for the most part, it was nice to see people that I really miss at work and of course Mary and Carey. My post hospital visit was quick and I didn’t have much to ask or talk about since my questions now will mostly be directed to my Neurologist who I see on April 23rd. I changed my appointment from the 24th because I want to go to that conference on the 24th.

Since I have finally gotten over the Pneumonia and can actually get out of the house, I decided that I must start walking to get at least some sort of “exercise.” I still have low energy, very weak at times, walking is difficult and laborious yet I have to start somewhere and it’ll be good for me, my health, and recovery. I long for the days that I would take bicycle rides along the coast and try to beat my time, riding as fast as I could uphill, against the winds, passing people struggling to get up the hill, listening to my iPod blaring my favorite music of the day. I also practiced a lot of Bikram yoga back then which was so good for me. It was easy on my joints, always a challenge when I could do more, do the poses even better, sweating out all those toxins, feeling the most amazing sense of peace after practice, the final savasana, always so rewarding. I can’t do those things anymore, not right now anyway. Hopefully one day soon. I recently bought a kite. I’ve been wanting to fly one for decades now, remembering how I had one when I was a kid. It was cheap and I thought maybe it would bring some sort of peace, watching something fly in the wind, wishing I could fly. I packed up a backpack, brought some water and treats for Mia, packed up the kite just in case I decided to try it out, and some other necessities or things I might need “just in case.” You can never be over prepared, especially with a life and symptoms that can change without warning or notice. I have to rest a lot when walking especially because I have a tendency to “over do it” because I know that at one time I was capable of so much more.

Mia and I got to the park and I was checking out the skate park and ring, which apparently is locked up and only used when they have the few roller derby events and what not. I wish it was always open. Once I found out about roller derby I wished I was able to do it but I was “too old” and my nerve damage was very bad back then so it wasn’t an option for me. I was thinking that maybe I should start roller blading or skateboarding again. As we crossed the almost empty parking lot to go to a grassy area with trees (as it was a hot day), I started to run the short distance with Mia, thinking that the road must be hot and was concerned about her paws. Right before we reached the grassy/ dirt area, I lost my balance and fell hard. One of the first things to hit the ground (probably right after my knees or body) was my head. Luckily I didn’t lose Mia, I was still holding onto her leash. I was stunned. Then I started to feel the pain as I lay there, not able to get up for a while. My head, nose, knees, wrists, elbows… How embarrassing! Half of my body was on the dirt, my legs still on the road. At least it was a parking lot and not a main road. I realized that my hat and sunglasses had also flown off my head and face. I just stayed there for a while, wanting to get up as soon as possible. It was more embarrassing because there were at least two people there. I’m not sure if they saw me fall but certainly saw me laying there as one drove past me to leave the park and then the other parked nearby and later left after I got up to walk a short distance before deciding that maybe I should let my mom know what happened “just in case” and head home. I never hit the front of my head before. The only other time I hit my head was years ago while snowboarding downhill and falling hard and hitting the back of my head and seeing black for a little while. I certainly did not want to go back to town to go to the doctor again, especially if it was nothing however an hour later I was getting very sleepy, disoriented, the bump on my head was getting larger, my headache that had lasted for days and finally had gone away was back, and I was getting nauseous so just to be on the safe side we had to drive back to the clinic to go to Urgent Care which was the last place in the world that I wanted to be. Luckily, the doctor that I saw said that the forehead is one of the strongest points on your head so he wasn’t too concerned about it where we needed to do any further testing. He said I could either go to the ER to be observed for 4-6 hours or I could go home and a “responsible adult” (my mom) could just make sure that I was okay and didn’t get worse. I had some Zofran so I took that for the nausea and the doctor said I could take Motrin for the headache (I guess he didn’t look at my chart as I can’t take anything besides acetaphetamine because of my kidneys) so I tried some Tylenol even though that usually never works for me. After several hours I started to feel a little better. I told my step father that I probably fell and hit my head because my face is so big now that I take Prednisone so it’s like a toddler’s head and it made me topple over. 🙂

This morning however I woke up with a headache from hell, I could barely move my head/ neck (and it was painful), and my neck area/ top of my back is still sore/ stiff. So maybe I can’t rollerblade and skateboard after all since I can’t even manage on my own two feet (can you imagine adding wheels)? Lol. I have some Salon Pas pain patches on my back for now, took some Tylenol, and an ice pack which I’ve been alternating from the back and side of my neck and my forehead. It’s been about two hours since I’ve been up and I’m starting to feel better. The plan for the day will just be to take it easy. Read my current book “The Girl with the Dragon Tattoo,” maybe watch a Netflix movie, maybe blog about wigs and hats, spend some quality time with Mia, and just lounge around. I won’t worry about the things I need to do until Monday. I need a mental break. Have a wonderful day everyone. 🙂

New Page

I started a new page today but am not sure if it shows up like posts do. I’m still trying to learn this whole “blog thing.” I named it “Randomosity” because that’s exactly what it’s about. Just a whole bunch of random stuff. Thoughts, questions, my day (whether boring or interesting), crazy stuff, basically whatever I want to write about. You can check it out for a little more information but I’ll start posting more later tonight or more likely tomorrow.

I encourage any comments, feedback, especially comments. I think it would be fun to interact. I don’t know about you, but I tend to isolate myself when I’m sick. I found that friends don’t come around as much as they sometimes used to and they stop asking if you want to go out because: 1) Either I say I want to go and then the day comes and I physically cannot; or 2) I say no because I don’t feel well. I wish they would still ask just for the chance that I actually felt semi-okay that I could get out for a little while, but in my experience, that doesn’t happen. So I self-entertain, which is perfectly fine with me and then when I get tired of my current antics, I can rest, or go on to something else. It’s hard when I have company and then get really exhausted or feel sick and don’t want to be rude and ask them if they could leave (especially if I’m the one that invited them over)! So being alone often works out best. But then sometimes it gets lonely and I wish I had company, someone to talk to other than myself.

Also because we all share the same “disease” or something similar, we understand what each other is going through much better than someone who has never been through what we have. It truly is unfathomable. If I think about it and didn’t go through this, I wouldn’t understand, no matter how much it was explained to me. The pain, exhaustion, headaches, joint aches, everything, can only be understood in the context as to what we personally have experienced ourselves. And for the “healthy” person who maybe never needed pain medicine, never got sick, never was poked and prodded for innumerous testing, biopsies, spinal taps, surgeries, etc. could not be expected to fully comprehend even a fraction of what we have gone through or what we put up with on a day to day basis. I dislike when someone implies that I am weak, have a low pain tolerance, am “always” tired, etc. because if they only knew. If they could just experience a moment, an hour, a day, a week of this, I don’t think most people could handle it. I think we are all stronger than we think we are and definitely stronger than some choose to believe, even in those times when we may actually feel weak.


I decided to make another page with just random thoughts and other miscellaneous writings. Maybe it will be fun, maybe not. Since I don’t journal anymore and cannot physically write legibly, typing when I’m not too shaky from all the meds, especially the Prednisone has become my “outlet.”

This section won’t be dedicated to Lupus since I decided that Lupus doesn’t define who I am. There are many things that I am, that define me. Some good, some crazy weird (which I love but not everyone “gets” or understands), some that depending on who you ask are “acceptable” and some that are “unacceptable.” But I don’t care what people think of me, how they perceive me, nor how I am “judged.” Life is too short to concern myself with such things. So depending on who you are and what I write about, you will either like/ love this section or you may dislike it. I hope though that you will find it at least semi-enjoyable and perhaps entertaining.

If you want to add any comments about what you would like me to write about or want to share something about yourself, feel free to do so. Have a wonderful day despite everything you are going through. Always try to find things to be grateful for, even if that may only be one thing a day at first. Sometimes attitude can be everything and can make a difference in our daily life and recovery.

Koi Fish