A Post about My First Day Back to Work and then a Tornado took Over the Keyboard…

Yesterday was my first day back to work after about a two month leave. You will find that I often have to guesstimate time as I have no concept of it. Time and Life seem to pass me by and I still don’t know what happened to the months from January through the end of April. Almost half the year has come and gone. Every year, for the past two years I’ve promised myself or held high hopes that the coming year was going to be the best year ever. “2014 will be the best year ever!” I proclaimed in early December just before my first admission into the hospital. To think that I am still dealing with Lupus and my impaired kidney function are depressing to say the least. I’m not always actively depressed because I know what it feels like and being pre-dispositioned to it, I need to make conscious decisions to find things to be grateful for. Sometimes Depression feels like a darkness that envelopes and drags you to a never ending empty abyss where one keeps falling and falling, like Alice but not. At least Alice landed on the ground and was able to wander through a “colorful” fantasy world. I try my best to live as “normal” of a life as possible. But then that thought brings up the question, “What is normal?” Normal is relative, can change from day to day or moment to moment, can coincide with what an individual would like Life to be, and depends upon what an individual is used to on a consistent basis. What is “consistent” for me really sucks at the moment. Yes, I’m “better” than I was a couple of months ago but “better” is also relative and I don’t want to just accept “better than usual” or accept a totally modified life because of a disease that has no cure and doesn’t “play fair.” Sure, not everything in life is fair, but crap, everyone deserves a “break” now and then. I don’t believe that someone can understand this unless they live with Lupus, another autoimmune disease, chronic pain, chronic depression, or something (disease or what not) that impedes their life in some way, hindering them from living a carefree life where one has the freedom to choose what they want to do, and be able to execute all plans without having to worry about suffering the consequences later or having to cancel.

Work wasn’t that bad as it was a slower day than usual. I was able to catch up on over 100 emails (I got through most of them); corrected other people’s mistakes that were in the work queue (I sent some directly to those who made the mistake as I don’t have time to correct everyone’s laziness and stuff that could’ve been avoided if they addressed everything at the time of check in). One person acted like I was being lazy for not wanting to correct her mistake so I corrected all of them until I had enough of that b.s. for the day; and went on to get a lot of other work done as well. It was pleasant working next to someone competent enough to check people in and out without hesitating so I wouldn’t need to constantly stop in the middle of whatever I doing. It’s frustrating if I’m sitting with someone who doesn’t want to be there and they wait for me to help someone (and we’re quick about acknowledging people, so the other person is hesitating) while they don’t have as much to complete as I do or are doing personal things on work time. Their work is complete every single day and the next day is a brand new day. I have additional job duties apart from only doing my receptionist and office work. I love helping people so I’m not complaining about that and I really wouldn’t mind helping everybody by myself if I didn’t have so much to do that I’m always rushing and having to prioritize everything so that I can complete all of my work in time.

A couple of things that I feared about returning to work naturally occurred. It was inevitable. The first was having multiple people ask me how I felt and if I was “better.” I think I’ve already said in another post how much I dislike people asking me that question. I was as brief as possible. I know that some of them were genuine but some were just nosey. The second thing I anticipated was for people to say something to me about the Lupus or being sick. What I got a lot of was, “Well you look a lot better.” Really? I asked one of those people because I was really curious, “Why? Because I don’t look pale anymore?” She didn’t get to answer as a patient came by so I went to help him. I just don’t understand what defines looking “better?” What makes anyone think that just because I look “okay” on the outside, it means that everything is in fact okay? How many times does outside appearances greatly differ from what’s going on in the inside? When did what’s happening inside one’s body (or mind) become a direct reflection of the way one looks on the outside? Sure sometimes I might look pale (like I’ve been told), bloated from water retention, or maybe I just look like crap, but during “better days” or remission, I am young and appear healthy. When I had problems with my nerve damage and forced myself to walk as I bit my lip and dug my fingernails into my palms in a feeble attempt to redirect the pain elsewhere in the hopes of lessening it, many of my friends and family told me that I should ask my doctor for a handicap parking pass so that I could get closer parking. For years I would hurry in and out of grocery stores as quickly as possible, calculating the best path to take so I wouldn’t have to take extra steps, because I couldn’t stand to walk. I couldn’t stand to stand; to sit; to lie down. It didn’t matter if I was on my feet or not in order to feel what was the worst pain ever but it was definitely worse when I was on my feet and walking. Here is my sorry endeavor to explain the pain of Morton’s Neuromas that I have experienced: It feels like there is a big rock or hard mass stuck and wedged in between my tendons and pressed up against nerves right where the toes meet the ball of my feet; the pain never ceases and is a lot worse when my feet touch the pavement while I walk to my destination. It feels like my feet had been on metal train tracks and a train ran over them, shattering and destroying every tendon, muscle, fiber, and nerve within my feet. It got worse when I had Plantar Fasciitis in both feet because then my entire foot hurt. No matter how I stood, there was absolutely no way to alleviate the pain. I’m not sure if I got Plantar’s because of the way I inadvertently began to walk to try to compensate for the pain. It’s difficult to describe and I’m bad with descriptions. Sometimes there are no words, nothing to liken how you feel or your pain to, or nothing that the other person would think is reasonable to liken it to. For instance, when I said that it felt like a train had ran over my feet. Who would really believe that without thinking: 1) I had a wild imagination; 2) I had a really low pain tolerance; 3) I was exaggerating and wanted attention; or 4) Whatever else goes through someone’s mind when they pretend to want to understand while they are really silently judging me. I never asked for the handicap parking pass because as I tried to explain to them, I don’t want people to look at me and get mad when I park in a handicap stall because I am young and “look healthy.” I knew that if someone ever said something to me about it, it would really make me angry and to avoid getting stressed out, I do whatever I need to do to circumvent situations that will definitely make me mad.

It makes me sad how there are other people who are suffering more than I am and here I am complaining about things. However, knowing there are so many others who suffer like I do motivates me to want to become involved when I am off all of the extra medication and have a tad more energy. My end goal and passion would be to hopefully help facilitate a cure for Lupus. I don’t know if it’s possible, I don’t see why not as it seems that so many developments in the medical field have occurred. Sure maybe all of them haven’t been tested enough for the final “stamp of approval” to become an option for the masses, but when will this happen? How long must we wait? I am aware that I may very well be naïve to think that I could do anything to help but that’s not going to deter me from at least trying. Imagine if a multitude of people did the same thing? A bunch of individuals connected by and focused on a single cause of “finding a cure” for Lupus coming together. The more, the merrier. Maybe if there were more people who were constantly persistent and wouldn’t take no or “wait” for an answer, we would all be taken more seriously and no longer dismissed by doctors (because they don’t know the answer and don’t care enough to actually find out for us because frankly, it’s not “their problem,” right)? No more being given the wrong treatment plans or meds that actually make us worse by a medical professional who we are in essence putting our lives into their hands; it would no longer be necessary to manage avoiding another “oversight” on your own when being prescribed medication that you shouldn’t take because of one of your other health issues, or because of the side effects that could occur with one of your current meds; and anything and everything that you have dealt with because of Lupus that has been “unacceptable.” If a cure existed, we would no longer have to worry about all of these things and more. Lupus would eventually fade away into a distant memory and soon you would marvel how you no longer can recall what it felt like to live with Lupus. I know this all sounds ridiculous, but it’s a beautiful dream, isn’t it? Why did it take so long to find one medication for Lupus, and even that medication wasn’t the best? I know it’s not easy but it must be possible. I know about the Lupus Foundation of America and will contact them soon enough to find out what I may be able to do. Maybe everything possible is being done, I don’t know yet because I haven’t looked into it, but I plan to do some research and find out. Do you know of any other Lupus organizations that may exist so I can look into them?

I received an email last night from one of my friends who told me how strong I was because of my current dealings with Lupus and kidney disease, my past experience with Lupus flares, and “everything else” that happened in my life (I’ve known her since I was about 16 years old) & she knows about some of the major things that I have gone through. I couldn’t see what she saw or what made her think that I was so “strong.” Sure, I have been through a lot (less than some people, more than others) but what makes me strong? I still exist because I continue to wake up every morning, but it’s only because my body hasn’t given up yet. I have looked at life sometimes as getting hit by a bus, I stand back up, dust myself off, and then go on my “merry” way until another bus hits me and I do the same thing over again. Everyone does this. You just continue living, even if you feel like you’re being dragged through life by a rope connected to an off road pickup truck. There is no pause button in Life. Sometimes I wish that one existed.

Now that I know what it’s like to be healthy (from distant memories) and then to be “Lupie,” I appreciate things more. I don’t take things for granted like I once had the luxury to do as I didn’t know any better. I know that if it would just “go away,” I would appreciate every single moment in my life. Well maybe not every single moment. But I would be ecstatic to spend the day at the beach without having to be concerned about the sun. I would run or ride my bike as fast, as far, and as long as I wanted to. I would definitely start practicing Bikram Yoga again and hike the toughest and most beautiful trails. I could make future plans and look forward to them without having to worry about cancelling at the last minute. There would definitely be a lot less worry as I would live a carefree life. A life that would be untainted by extreme exhaustion without good reason, by different degrees of pain in different parts of my body, and the stress that comes from the experience of knowing that my health status can change quickly and unexpectedly.

We all know that our pain tolerance has increased greatly because we become somewhat accustomed to the pain. We know that on some days, the nausea or exhaustion isn’t as bad as others which makes us (or me) consider that particular day a “good” one. I was thinking about this the other day and how I’ve just accepted all of this as my life. But it’s unacceptable. It should not be something that I have to accept. However I guess “accepting” it to an extent is better than fighting something that cannot be fought. There just isn’t enough energy to deal with battles that cannot be won. But who wants to live isolated and virtually alone? In general I don’t mind because I’ve always been a “loner” and most of the time I prefer it for various reasons. But I don’t enjoy it all the time. I believe it’s worse when you are going through a flare and it seems like everyone has slowly disappeared from your life. When you end up in the hospital and you do have visitors (which you greatly appreciate, sometimes more than they will ever know) but the people who you love the most and say that they love you the most do not come. Yet everyone, including those “loved ones” that weren’t there for you when you needed them most seem to enjoy giving their opinion and “tough love concerning what they think you should be doing to get better. Then they get mad (at least in my experience) when I don’t do what they say, as they start to blame me for my current health situation, claiming that I’m not trying to “help myself,” and not doing what I “should do” if I really wanted to get better. Today I didn’t even try to stick to my liquid restriction which is a bad thing. It’s very difficult for me and I don’t think I’ve succeeded even once, but I try. Today my mom and I went to the movies and yeah, I did have a large drink and yes I really wanted Starbucks afterwards. So I’ll deal with the consequences. Today I just didn’t care and I need to be able to have a “day off” every once in a while so that I don’t give up on everything and go crazy. After the movies, my mom questioned me about my liquid restriction in a round about way that upset me. I felt bad but she’s one that seems to always question how I feel or determine if I’m really as “sick” as I claim when she asks how I am feeling. So I get a little perturbed anytime she says something concerning my health. If she wanted to say something I would prefer her to say what she really means instead of beating around the bush and never getting to the point as to why she brought up the subject in the first place.

After we got home from the movies, I was talking to a really good friend of mine and she asked how I was feeling. She already knew that I pretty much woke up, went to the movies, stopped at Starbucks and came home. I told her I was tired and wanted to lie down. She laughed at me while saying, “You’re tired after 6 hours of being awake?” I was already irritated from earlier so I said, “Yeah, I am. I have Lupus, remember?” Again I felt bad after it came out of my mouth. I didn’t mean to be so harsh or to pull the Lupus card, but I did. She apologized and said that she wasn’t thinking and realized it as soon as it came out of her mouth, and also not to place her in the same category with everyone else that says things like that to me. See, I’m not strong. I need to grow “thicker skin” like my dad used to insist I needed to do to make it through life.


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.


Full Moon Rising (Two Full Moons Ago)

Full Moon Rising (Two Full Moons Ago)

Two months ago my Aunt and I went to the beach to watch the moon rise. However it had already risen so we sat on our towel, she pulled out some drinks and snacks from the cooler that she prepared and we talked a lot.


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. 🙂

I Found a Lupus Conference!

I was so excited yesterday when I found out through a magazine that there is a group that meets quarterly on O’ahu. It seems like a mixed group as the main moderator has Sjogren’s disease, so I’m assuming it’s a support group/ conference for people with various auto-immune disorders. They have a Dermatologist set up for late this month as their guest speaker, a Rheumatologist that was highly recommended to me by a patient will be at one of the conferences, and I cannot remember the last one for the year. So I’m considering flying down either for the day or night. A “support group” was something that I never really thought that I needed in the past but this time around is worse and it would be nice to meet other people who understand. Perhaps I can learn something new from them, whether it be knowledge about the disease itself, how it affects the different organs, or how to deal with the frustration and other negative emotions that sometimes comes along with being exhausted, in pain, and feeling “sick” just about every single moment of every single day. It can wear one out.

The magazine was something that I would have never read and never seen in my life, however my mom’s friend had run across the article and passed it along knowing that I have Lupus and that I might be interested in it. I emailed the woman who wrote the article immediately and was surprised by her quick response. Since then I’ve asked her more questions as to what to expect (I need to know that this will be worth my time and money as a 20 minute airline ticket between islands is ridiculous and it’s cheaper to fly longer distances, across multiple states on the mainland for the same price)! And had her add me to their email list. I may have to go alone which I was hoping that someone would come with me (I know, big baby, right)?  🙂 I may have found a friend to come with me but even if it doesn’t work out, I’m going to do this. I have some friends on O’ahu so I was considering contacting them (or at least one or two of them since I won’t be there long). Or why not? I could stay a day or two longer.

In the meantime, Mia’s newest trick is learning to “count.” Which I know isn’t counting, but that’s what I call it. She can go up to 3 now. I show her the number of fingers (1, 2, or 3) and say the number out loud and put my fist out in front of her. She then taps my fist the amount of times that I stated and then she gets her treat. She loves her treats.

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.

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