My “Lazy” Day

I woke up this morning around 7:20 am. Even though I fell asleep at a decent hour last night I was still exhausted. The last two weeks at work have been super busy, long work hours (or staying after work to help someone out), and a morning schedule which varies daily so I can never get used to my schedule. I start work anywhere between 5:45am- 7:15am. I need to be there 15 minutes before our first patient comes in. I drank some water and took some of my morning meds. It was cold and rainy this morning (it still is), a perfect scenario to crawl back into bed and bury myself under the covers. So I did. It was marvelous. And I fell back asleep. I did this a couple of times (making sure I took the rest of my medication) and finally arose at 3pm. A part of me was upset that I wasted my day. I felt lazy. But I knew that my body needed the extra sleep. During the weekdays I feel like I am only able to muster enough energy to get through my work day. Sometimes after work, I’m too tired to drive. So I sit on a bench in the parking lot until I force myself to just drive home. Today I was a little disappointed in myself for missing my 2nd cousin’s graduation party at the beach. But with the pain in my back and feet on top of being totally exhausted, I knew I couldn’t make it.

Yesterday was wonderful because I was able to go down to 10 mg of Prednisone. So the doctors are still weaning me off of this vile pill. I hope that my health continues to improve. It’s very exciting. When I think about the time that I was on leave from work, I see that I have come a long way. It was a dark time where most days were absolutely miserable, too much uncertainty, regression in my progress, getting diagnosed with more diseases or “conditions” that have no cure, and all the pain and headaches that were worse than I had ever experienced in my life. At the time, I could not see the “light at the end of the tunnel.” But I feel like I am almost there and ready to be in the clear for as long as my body allows. It makes me appreciate my life more. For most of my life I was chronically depressed and wanted to cease to exist since that seemed like the only option to “stop feeling”. In the past several years I have worked hard to be more positive in the hopes of living a better and happier life. I no longer am in a constant state of depression but still have moments here and there. I realized through this last Lupus flare that I did not want to die yet and was determined to fight.

Even though there is less protein in my urine (my labs show a huge difference since December), I still have bad edema. I started to notice bloating in my feet and ankles again. For a while the water retention was only manifesting itself inside of my body (that’s what I had been told). And I believed it because I could and can still feel it. All the bloating in my stomach, thighs, and face were the most uncomfortable. And still is. I’ve noticed more bloating on my arms and back when I wake up in the mornings. And when I carry my purse by hanging it on my arm, I can see all the indentations when I put my purse down. This makes me believe that even though less protein is being filtered through my kidneys, my kidneys still are not functioning at a decent level. Does anyone have any experience or thoughts on this? I have an appointment to see my PCP on Thursday so I can ask him then about it since I do not see my Rheumy or Nephrologist for a while.

Pink Hibiscus I spotted at my Aunty's house.

Pink Hibiscus I spotted at my Aunty’s house.

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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. 🙂

Plumeria

Plumeria

 

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. 🙂

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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. 🙂

Randomosity

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