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

 

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.

Image

Countdown: 3 More Days Until Work

The day that I’ve been dreading is almost here. This thought came to the forefront of my mind about a month before my official Return to Work date of May 2nd. I was worried that I wouldn’t be ready as I was hoping that by then (by now), I would have been better, weaned off of all of my medication that I keep in a large recyclable bag because I’ve become too “lazy” to separate them weekly by AM and PM pills (there are just so many of them). I was hoping I would be “thriving” (or at least at a decent “Remission-Type” level off of the meds) and could function better and not worry so much about how my life can be thrown off balance at any moment. Today I am still not at that place where I want to be. I don’t feel that there are many options but to go back. I love my co-workers and my job (for once in a long time), I have a good job with great benefits, I was lucky and grateful to have found this job on an island where I was worried when I first moved home would have nothing available for me.

The island is small, jobs are difficult to come by unless you know someone and then that someone has to be important, a lot of jobs are customer service jobs (waitressing, cashiers, ticket agents, reservationists… jobs where I would be required to stand). That was not an option as the pain from my nerve damage in both feet were causing excruciating pain at that time (I’m still surprised how it temporarily went away for the first time in many years after starting all of these medications but recently started to feel the tingling, numbness, and pain beginning again). Nothing to complain about though, there are other things that are way worse. I contemplated moving to another island but Kaua’i is my home and I was set on moving home.

Pink Hibiscus

Pink Hibiscus

Beginning in mid March 2012, I applied for any and all jobs that I would be able to perform. There were a lot fewer than I had hoped for and not the “best fit” for my taste, but a job is a job. Money is money and it pays the bills; and I had a lot of bills. I was disappointed that there seemed to be no payroll jobs on the island. On one visit I had wanted to open up a new business. I noticed that many small businesses had Accountants to do their Payroll taxes and either did their own payroll or had another company do their payroll for them. At that time I hoped to move home in two years and wanted to start a business where I would take care of all payroll and tax needs for a business, it would be a “one stop shop.” I was in a payroll position at the time and because of my experience, I was the top payroll person for the Agency that I worked for. I was going to go through all the payroll classes and get certified through the American Payroll Association. I was excited until I returned home to Colorado and found out that my significant other (who had told me to check out jobs and other details for the possible move) had decided that moving was not an option anymore because it was no longer a mutual desire. Back to March, out of all the jobs that I applied for, I received two phone calls. One was for a part time Dental Assistant (I stopped by to fill out an application) and one for a per diem/ on call Hospital Operator (Switchboard). These positions weren’t ideal as they weren’t full time but any income would help. I was called in for an interview at the hospital and got that job. I started on the last day of May 2012. From that job, I ended up transferring later in the year to a Part Time position taking calls to schedule/ reschedule appointments (among other job duties) for two departments in the clinic and then found this Full Time position last April in a department that deals with Diabetes Management and Education, Coumadin, certain types of Physicals & shots, etc. If I were to lose my job, I don’t know what I would do. Now that I’ve accidentally exceeded my FMLA for the twelve month period (which restarts in mid November), I don’t feel “safe.” I can only hope that everything will work out. I worry a lot, especially when it comes to money, job stability, my health, etc. but I’ve been telling myself (as I have to constantly do) that I have no control over these things and “whatever happens, happens” and I will deal with it as it comes. Things always seem to have a way of working out anyway in the end (well, most things~ health issues are a whole different story).

In a way, I am happy that I’ll be returning to work. I want to return to the “land of the living.” I miss the socialization (though I’m not necessarily a social person). I miss certain co-workers, friends, and patients. I just hope that I don’t have any issues. I wonder where all the time went? There was so much that I could’ve accomplished but didn’t. But I shouldn’t get down on myself about it because I have to remember that I was battling with this disease, trying to take on the world by taking the necessary steps to stop the chaos that was happening inside of my body, I wasn’t well and needed to rest so that I could get to a point where I could “live” life again. Now I need to start getting on a sleeping schedule (maybe I should’ve started this two weeks ago). I’m so last minute sometimes. My taxes still wait for me: I need to get all of my business receipts and spreadsheets together as well as my individual tax information ready for my Accountant. Oh boy. Maybe today or tomorrow. I’m still waking up.

Lupus and Love

I occasionally started to think about love and being in a relationship after my most recent Lupus flare emerged full force. I had a lot to think about and new ideas to get used to. I was being admitted into the hospital almost every month, my kidney function had plummeted, I began to experience extreme brain fog for the first time, was extremely forgetful, and thought that I was going crazy. I contemplated finding a therapist to talk to before I had a breakdown (which I thought awaited me in my near future). Every time the doctors found something else wrong with me and gave me a new diagnosis, I would just roll my eyes, so sick of yet one more thing to deal with. One of the worst parts for me was when I began to have difficulty doing the simple things: I would have to sit down and take more breaks (even if I had just gotten up out of bed, walked to the bathroom to brush my teeth, start putting on some make up, break; make my hair, get my clothes ready, break; get dressed.. you get the picture). My hands and legs would tremble or shake visibly and was worse than it had been over a decade ago when I was first on Prednisone as well as other medications. I was extremely frustrated with everything that I had to deal with on a daily basis (the pain, feeling sick and nauseous, the ridiculous amount of water retention, being uncomfortable, having difficulty breathing, the fatigue, etc.) By merely walking a few steps from one room to another was enough for me to need to sit down to catch my breath as my heart raced and I would lose my balance often. I felt like my capability to do certain things for myself was declining and was afraid that this was only the beginning of my new reality. Sometimes I needed help getting dressed, or getting in the shower so I wouldn’t fall, many days I couldn’t prepare a simple meal, and for over a month I could not drive. I have always prided myself in being independent and would rather do things on my own, no matter how hard it may be than to ask someone for help. I wouldn’t want to inconvenience anyone, but I also am stubborn about having to admit that I cannot do something for myself and admit that I need help. I was depressed for a while because I did not know what the future held for me and wasn’t sure if my declining memory and feelings of going crazy was temporary or if it was something that I would have to deal with for the rest of my life.

One thing that I had to come to terms with which was difficult was my desire to have a baby one day. It would have been preferable to do this years ago but I knew I still had at least a few more years before I would remove this option from my life. I always wanted a family of my own and have several children but after being diagnosed with Lupus, I would have been content with one. My mom always told me that I could not have a baby because she was worried about my kidneys and knew at least one person who had Lupus and the same kidney disease that I have and she had a couple of children which worsened her Lupus. But I’m hard headed sometimes and didn’t want to listen to her. I just wanted a baby one day. I felt like it was a life experience that I didn’t want to miss out on. I wanted to be able to raise my child, see him/her grow up, teach him/her, and everything else that came with having one’s own “mini me.” 🙂 I wanted to be there and be a source of encouragement in times of need, to praise/ congratulate after every accomplishment. I wanted to experience having grandchildren. It was a whole world that I never experienced before and did not want to miss out on. One of my first thoughts after my first hospital stay was, “Who is going to take care of Mia if I die?” I was incredibly sad. No one could take care of or love Mia like I do. She would think that I abandoned her. At no point did it ever come to mind that my kidney function might begin to fail or that Lupus would affect my body and life like it was so long after the last scare. I realized that with my life, there would never be any guarantees. Yes, I could make it through this rough time and go back into remission but there would be no promises that it wouldn’t return. In this case, how could I know this yet still choose to have a child if there was higher possibility that I would leave him/her motherless earlier than I should?

I was “happy” that I was no longer in a relationship. Although I did feel alone a lot and it would’ve been nice to have someone that loved me to be there and let me know that “everything would be okay.” Even if we didn’t know that for sure, it would have still been comforting. I felt like because I was “sick,” “imperfect,” and was limited in what I could and could not do on a daily or moment-by-moment basis, I would become a “burden” on anyone who chose to love me. I didn’t want someone to stay with me just because they felt that was the “honorable” thing to do yet silently resent me for it. I didn’t want to take their life away from them because they had to cater to me and how I felt that day. And even if I had found that “perfect person” who loved me immensely and wanted to be there for me, didn’t mind it at all, and who chose to stay every single day, how could I hold them back from living a full life? A part of me felt undeserving. I did not deserve to be loved. I also felt like it would be selfish to ask someone for such a thing. It touched me to hear about other people with Lupus who have significant others who do love them and choose to be with them despite it all. That Lupus and all that comes with it did not frighten them away. To make myself feel better, I think that being single makes my life easier because there isn’t a certain someone that I need to talk to every day no matter how bad I feel; I don’t have to feel guilty about not being able to go out again; and if I want or need to be alone I can do so without having to worry about hurting anyone’s feelings.

Often when I think of subjects that are undesirable to me, I just stop thinking. I’m a master at repression. These topics never fail to resurface though. One day I was wondering why do I feel this way? That love cannot exist in my life as long as Lupus does? Why do I feel like I don’t deserve love? Or that a person who could still love me wholly even though I had Lupus does not exist in this world? I stopped thinking again so haven’t figured that one out yet. However I have come to believe that it is possible to find such a person to love me. I know that right now is not the time and that I need to work on myself first and learn how to deal with my disease. Or maybe I just need to be more at ease with this disease.

Liebster Award

I was nominated for the Liebster Award by Athena of Athens. If you haven’t read her blog yet, you should definitely check it out. 🙂 I was also nominated by Enissa whose blog is Self Love Soul Series. I’m going to answer her eleven questions as well. Another awesome blog (these are two that I would definitely have nominated if they hadn’t already been nominated).

The Rules Are:

The Liebster Award is awarded to bloggers with under 200 followers to try to promote their blog a little and also bring together a community of bloggers. The rules of the competition are as follows:

•The nominated user must provide a link back to the person who nominated them.
•Provide 11 facts about yourself.
•Answer 11 questions sent by the person who nominated you.
•Choose 11 more people and ask them 11 questions.

11 Facts about Myself:

1. My first job was at a peach farm. I was about 15 years old and was paid a little over $3/ hr. I cannot eat peaches anymore, they disgust me.

2. I enjoy either dressing up, putting on a crazy amount of make up, and either wear different wigs or do something with my hair. It amuses me when I’m bored. I haven’t done it in a while but did it yesterday. Photos and video are always a plus so I can laugh about it later.

3. I like to make/ create things. Whether it is a short story (since I don’t have an attention span that can support long term projects), I have a bead and gemstone jewelry business, I like to make and edit videos, I enjoy art (especially drawing), photography, and music (I can play the flute, piano, guitar~ and piccolo and ukulele sort of don’t count since they are similar to the other instruments. Well I guess the ukulele chords are different than the guitar so maybe I can count that one too). 🙂 I’m not super talented and am not proficient, however it’s good enough for me.

4. When my sister and I were kids, we tried to make up our very own language so that no one could understand what we were saying. Today we can both only remember three words. I think that’s pretty “phenomenal” granted how many years have gone by and that both of us remember as much as we do. I guess I do this at work too. I have several people that have taken up my “language” and use it regularly. It’s pretty funny/ amusing to me. So sometimes I’ll even make up words or start using another word/ phrase that we used to use as children but we don’t hear everyday anymore to see how long it will take for someone to start using it too.

5. One of my favorite places to be is at the beach. I like to boogie board and love to paddle board. The ocean always seems to calm me. Even if I’m just sitting on the beach and staring into the horizon with my thoughts, I feel at peace (unless I’m contemplating something troublesome). I would like to try kite surfing but knowing me, I would freak out because I was going too fast, forget what I’m supposed to do to correct myself, and then smash the board and myself into rocks. That wouldn’t be fun.

6. My favorite job was in Payroll. I like calculating money, I like to do everything perfect when it comes to work, and I liked having my own office and not having to deal with people all the time. It’s nice to play my favorite songs from my iPod at work (and there aren’t a lot of jobs where you can do that). I do not like math though because I’m not good at it but money math is different since it’s easier. My dream job would be doing anything that interested me where I could be 100% self employed. I would love to be able to travel and work at the same time.

7. I love to budget. My budget is updated until mid 2015 at this time (reason was I was trying to figure out when I was going to be finished paying off all my bills; excluding my student loans; and how much I would have in my savings at that time).

8. A few “creatures” that give me the heebie-jeebies are: toads, spiders (especially garden spiders and cane spiders). I don’t have to worry about Black Widows or Brown Recluses here). And let’s not forget geckos.

9.  I graduated from UNLV with an English degree that I don’t use (I liked British Literature and writing courses the most). When I was younger I wanted to be a writer but always thought I needed to be “inspired” first and be able to write an entire book (which I never did). I also took longer to graduate from college because in the last semester of my Senior year I was depressed and failing most of my classes so I dropped out of college. It felt good at the time like I was being “released from jail” but later it became a big mistake. Because I changed colleges, they didn’t accept all of my credits so instead of having to just take one semester to get my degree, I had to go to UNLV for a couple of years (to satisfy their criteria).

10. I don’t like to watch t.v. but occasionally enjoy movies, reading books, writing, or work on a new “project” until I get bored of it. I do however really like Chelsea Lately and used to watch Revenge and Two Broke Girls. But to me, t.v. series require commitment to watch it every week on a specific day and time. Sometimes I’ll tape the shows but I haven’t watched any for months now. (I’ll order it from Netflix when I’m ready). 🙂

11. I am a procrastinator. It’s something that I want to work on… later. 🙂

Questions for Me from Athena of Athens:

1.  Why do you blog?

I decided to start a blog for multiple reasons. My initial thought was to write about living a life with an auto-immune disease called Lupus. I hoped that it might help someone else going through the same thing so they wouldn’t feel alone, and hoped that reading other people’s Lupus blogs might help me too. It also served the purpose of keeping a journal (since I don’t write in a journal anymore after finding out that multiple people throughout my life have read it and questioned me about what I wrote about them). I felt that blogging and not telling anyone that I know about it, I can say what I want or need to say. 🙂 I found many great blogs: blogs about Lupus, blogs about photography and writing, and others that I enjoy for different reasons.

2.  What’s the most traumatic thing in your life that’s happened?

I really don’t know since I don’t think about those things a lot. Maybe it was in one specific relationship that I was in for five years. It was like living in hell. I considered it “abusive” even though other people have experienced worse in this area. I felt that the relationship, no, this specific person was abusive on a verbal level, an emotional level, then on a threatening and physical level. Besides having to deal with working full time, going to college full time, feeling like I was going to doctor appointments full time (I had about 5 different doctors back then), and on top of it one thing I could always count on was being yelled at/ scolded/ belittled/ etc. every single day. Something that could be said in 15 minutes lasted for hours, it was like listening to something that was on a loop/ repeat. Sometimes the words were changed, however it was the same thing I had heard over and over again. That part wasn’t the traumatic part but it wasn’t pleasant. I wanted to leave sooner than I did but I was afraid for my life. A little window opened up for me and that day I just didn’t care anymore so I took the opportunity, left, and started a new life.

3.  How do you deal with assholes?

I usually just ignore them depending upon how inappropriate they are being and the situation. I do not like confrontation and sometimes wish that I could speak up more than I do because I think it would help me. Because when I do not call them on it, I become very agitated with the person, I get stressed out (maybe that’s not the best word but it’ll have to do for now), and then I become angry at myself because I didn’t say anything. I try hard to avoid *holes and other situations that will make me angry because I hold things in so much that a few times in my life I have raised my voice and yelled back at someone who started yelling at me first or “attacking” me when they didn’t have a good reason to do so. And when I do start yelling back, I get into a “zone” where I do not realize I have been yelling or exactly what I said until I stop.

4.  Do you believe in an afterlife?

I’m not sure as I have never been there… yet. However if the afterlife entails being reunited with all of your loved ones that have passed away and there’s no abyss of eternal flames that consume me, then I would like that a lot. It helps a little when someone that I love passes away to think that they are smiling because they are greeting all of their loved ones that they have grieved for and missed while on earth. I believe in reincarnation though.

5.  What is your favorite thing to do, besides blogging?

I have a lot of “favorite activities.” 🙂 When I’m up to it I enjoy the outdoors: beach activities, hiking, and riding a bicycle and try to beat my time from my best record. Actually I included my favorite things to do under the section 11 Facts about Myself, #3.

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11 Questions for Me from Enissa (Self Love Soul Series):

1. What was the last book you read and why?

The last book I read was “Uganda be Kidding Me” by Chelsea Handler. I read it because she makes me laugh and I find her very entertaining. Also since I have been going through some health issues, I thought that anything “light,” “funny,” and enjoyable would be more beneficial to my overall health than something negative or sad.

2. What inspires you more than anything?

Seeing results and (self) improvement inspires me the most. Positive feedback also inspires me to accomplish more but it’s not my main source of inspiration. I need to believe in myself and what I am doing.

3.Who is someone you know that you respect and admire? Why? (No one Famous)

I cannot think of anyone specific that I admire, however I do admire the human spirit and the hope, strength, and endurance it possesses when faced by extreme adversity. I admire people who “fight” even when they want to give up because the situation seems hopeless.

4. What is a gift or talent that you have?

This is a tough one as it’s difficult for me to say what I’m “gifted” or “talented” in when there are others who make my attempts look feeble compared to their accomplishments. There are always people who are better at something than others. So I asked my sister and a friend to see what they would say. Music (playing different musical instruments and teaching myself to play them) and drawing. I find when I draw a lot, I get better results but haven’t drawn anything for a long time.

5. What qualities do you love about yourself?

That I am loyal, fair, non judgmental, I’m a good friend (I listen completely, would do anything for my friends and loved ones, would never betray them, and can usually cheer them up depending upon the circumstances).

6. What qualities do you wish you can change or strongly dislike?

I would like to be more patient, not let things get under my skin as much as I do, and be more determined and not procrastinate.

7. What pivotal moment made you start your blog? Why?

I had been hospitalized a couple of times (first time in my life for Lupus complications- within two months) and was treading on unfamiliar territory even though prior to this I thought I knew what living with Lupus was all about. I didn’t think it got worse than what it had been in the past but I found myself not knowing what to expect. I hoped that by starting my blog, I could help others and myself. It was also a way to journal since I’m more apt to type than to write in a notebook every day. At one point it was very difficult to write and I didn’t write at all because one of my medications made me shake so much that my writing was illegible. It’s a little bit better now but I still prefer to type.

8. Where do you see yourself five years from now?

I would like to be self employed, a world traveler, successful in every aspect of my life, and be “healthier.”

9. What is your favorite t.v. show and why?

I don’t watch t.v. But a few years ago I really enjoyed Two Broke Girls when I caught it on t.v. This show always made me laugh, and I loved Max’s sense of humor, wit, and sarcasm.

10. What is your favorite ice cream flavor?

Kona coffee

11. What type of music do you like?

Alternative, Electronica, Ska, etc. I like a lot of different types of music despite their genre. Sometimes I don’t even know what category they fall in.

11 Questions for You:

1. Why do you blog?

2. What are you passionate about?

3. What is one of the funniest or craziest things that you have done?

4. What is your biggest accomplishment?

5. Do you have any pet peeves?

6. What is your favorite place in the world that you’ve visited? And if you don’t have a favorite place yet, where would you like to travel to?

7. What is your favorite thing(s) to do in your spare time?

8. If you could change anything about your life, would you? What would you change? If you wouldn’t change anything about your life, then why not?

9. Do you admire anyone or anything?

10. What is at least one thing that makes you unique?

11. What is one trait that you have that you would like to change? What is a trait that you have that you are proud of?

11 People I Want to Nominate:

This was difficult as there were so many great blogs to choose from. Also I could see that some already had over 200 followers. Some of the blogs listed may also have over 200 followers but I couldn’t readily see that information.

1. Nitya Nata

3. Lupus Really Sucks

4. Lupus & Me NZ

5. A Brave New Week

6. Nitaboo79

7. Swan Song of the Earthbound Phoenix

8. Waltzing with Whims

9. Moon Faced Lupus

10. Wandering H<3pe

11. The Wolf SLEeps in Me

Atrial Fibrillation Part II

I had my appointment today with my Cardiologist to go over the holter monitor I had to wear for two weeks and about the irregular heart beat that was picked up (Atrial Fibrillation). He explained everything to me and advised me to speak to my PCP about this so that my PCP can give me a referral (to be seen in the department I work in), probably put me on Warfarin, and have me follow up with the referral within a week or less. I was lucky enough that a spot was available tomorrow. I just wanted to get everything started before I have to go back to work next week Friday. I’m not ready however according to the Benefits Specialist who has our documented FMLA hours used replied to my email letting me know that as of May 2nd (when I return to work), I will not have FMLA anymore. I sent him another email just to re-confirm that but instead of asking for that, I asked him if I would be at zero or if I was already in the negative. I really don’t know how this happened since he gave me my FMLA unused balance over the phone before I submitted my TDI forms. When looking at my calculations, I thought I was safe to say that I had two weeks saved up that I would need to last me until mid November when I would need to get the FMLA re-certified.

I’m really not that thrilled about Coumadin, especially at my age. I don’t need to take a medication that is very important to manage as you don’t want your blood to clot nor do you want it to be too thin (especially if you fall and get a gash and start bleeding out). I remember reading someone else’s blog that also has an AFib and on Coumadin medication. If you have this, could you please tell me more about your story. Is it going to make my Lupus worse? Did you notice any more or worsening symptoms after you started the medication? Did you experience any crazy, notable, or merely something you had never experienced before while on Coumadin? I have done some research on it after I received the initial call from my Cardiologist’s nurse but most of it is “textbook” and because I have Lupus, I now know better than to listen to only what the textbook says. Especially since Lupus manifests itself differently in every individual at different levels. And sometimes the textbooks do not mention everything you may experience and Lupus is never predictable anyway.

I liken Lupus to a hurricane. It comes full force at you, devastating every thing that stands in It’s way (any organ, tissue, one’s nervous system, joints), anything and everything it so whimsically chooses. And since everything that I have mentioned are a part of “me,” and possibly “you,” we are essentially under a vicious attack at times. After the first round getting my Lupus and Membranous Glomerulonephritis under control, I was doing much better in comparison to what I had at that time come to terms with as my newly defined “life.” I was eventually told by my Rheumatologist and Nephrologist that I was in remission yet I still had to take a few medications (nothing heavy duty) and all of the symptoms of the disease didn’t go away. However looking back, it was good to still be able to go to work and not have to call in, not needing FMLA for years, and it was no longer necessary at that time to take any of those extra prescriptions that made me feel like I had a “pharmacy” in my kitchen cabinet. Many times back when I was going through my first major Lupus flare, I often wondered if the side effects from the medication was even worth taking it. The pills were supposed to basically slow down the progression of a disease that had no cure and also had the potential to lead to more diseases that have no cure. The Prednisone was the worst for me and as I lie there in bed back then, I just wanted to hurl those pills into the trash. My quality of life was nothing, I felt like I was dying inside, not only physically but mentally and spiritually. I felt like “the living dead.” But finally the hurricane “passed through” and my Lupus ended up retreating for quite a while, I naively believed that I was in the clear forever and just had to deal with different pains (ranging from “tolerable” to “severely cruel and intolerable”), to nausea, exhaustion, etc. It’s crazy how sometimes it takes me a while to name all of the different symptoms I have due to Lupus since I’ve lived with it for so long now. I don’t remember life without all of these restrictions and limitations. After being weaned off all the medication except for the few, it felt like the hurricane was finally over. I was able to do more than I could in months. But just like a hurricane, I have found that it was the eye of the hurricane I was living in while I was in remission. As soon as the eye had passed, the worst part of the storm was quickly approaching to destroy more than it previously did.

I’m not sure if I’ve said this before but I really don’t like people to ask me how I’m doing. I have gotten tired of saying, “Ok,” “better than usual,” “Eh,” “better in some ways, worse in others,” etc. I am through trying to explain to everyone what it’s like to have Lupus and exactly how I am feeling that day. Who wants to hear a “list of complaints” anyway? Isn’t that what it seems to come down to if you have never experienced anything other than good health, maybe bronchitis or a severe cold at some point in your life? Today a handful of people asked me how I was doing, I tried to avoid as many people as I could. My nurse at the Cardiologist’s office knows me and asked me how I felt. Can you believe that she asked me that same question about five times? So I had to find five different answers, or I guess I could’ve used the same one as she was not listening to my very brief answers. It was very irritating at the very least. I’m not excited at all, more so a little afraid and disappointed that I have to start Coumadin. Sometimes I want to get a Girl Scout sash and make illness, procedures, and surgery badges. Mines would almost be full by now. A useless and morbid thought, yet if I get one more diagnosis I am going to scream. Someone asked me the other day if I had Diabetes and my answer was, “Not yet.”

Another beautiful sunrise.

Another beautiful sunrise.

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.

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Last Night’s Dinner Outing

A couple of days ago a co-worker asked me if I wanted to go to dinner but I wasn’t feeling up to it. We were going to see how I felt the next day (yesterday) which again I had my issues and my body screamed to stay home. But then I’ve felt so deprived of human contact and someone to talk to, or someone that I rarely talk to now that I haven’t been at work for a couple of months. So I “got ready” which entailed putting on clothes that were “acceptable” for outside wear, try to do something with my hair to make it half way presentable (last night I regretted cutting it all off. I should’ve waited but what’s done is done). And who’s to say when I’ll have that extra burst of energy? That’s why I’m so last minute with plans, but most people need forewarning. I put on some eyeliner and then planned to put on some eye shadow but that was just going to be too much effort so decided against it. My mind was stronger than my body yesterday.

We went to eat some pasta appetizers (spinach and artichoke dip and butternut squash ravioli) and salads for our entrees. We stayed out for a few hours and I talked a LOT. We both did. I kept telling myself to stop talking, especially when I would forget what I was talking about because I often go off on tangents. I was also talking about silly things and probably not making sense to her. I kept telling myself that she wasn’t going to get some of my jokes and I needed to keep a filter on it. That worked half the time but I couldn’t help myself. See, I need to learn how to act in public again. 🙂 Hopefully I didn’t scare her off. 🙂 It was really great to get out of what I have been calling my “prison” and to be able to just tell someone what has been going on and she doesn’t know anyone involved so I could be open about everything I decided to disclose.

Here is my random photo that I try to insert into all of my posts. Just to break up the monotony of a white background and black words.

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My Aunty’s front yard on our little “walk.” I like the colors of the plant and also like the green plant that wraps itself around the gate. Butterflies like to hang out on that plant sometimes. I’ve been seeing one every day for the past week or so.

I met a lady on Facebook, I’ll call her “C.”  My sister had said that she wanted me to talk to C because she has Lupus and kidney disease too and thought it might be good for us to talk to each other. C sent me a message and friend request on Facebook and I accepted it and we’ve been emailing a lot back and forth since yesterday. We have a lot of things in common which is great and one day when the stars are aligned correctly we will both have enough energy to visit each other. 🙂 We were talking about how there are no Lupus walks here and how we wish that there was or that there were more groups or functions available. I told her how I’m thinking about seeing what I may be able to do to organize something for next year since May is just around the corner and there would need to be more time to prepare. I was thinking if I had a lot of money, I would hire a team to work on a cure for Lupus 24/7.

As far as books, I was reading “The Girl with the Dragon Tattoo” but once again the length of it frightened me and I really wanted to read one of the new books that I received in the mail a few weeks or maybe even a month ago by now. So I decided that since I wasn’t reading anything, it would be better to start one of the new books than to just not read at all because I wasn’t finishing my current book. I started Chelsea Handler’s book “Uganda be Kidding Me.” She’s one of my favorite comedians and I love her show even though I hardly watch it because I rarely watch television. I am really enjoying this book and find myself laughing aloud a lot. I have a few friends that the book makes me think of and these are the friends that I’m closest with. We all “get” each other, have the same sense of humor, and can say whatever it is that we want; so we’re always laughing. I miss them, but most of them do not live here and are on the mainland.  

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!

So You Like Pain?

I was thinking of pain this morning as I opened my eyes to wake up from a longer night’s sleep than usual. I’m happy that I have been able to fall asleep earlier than I have become accustomed to.  I don’t like insomnia. I enjoy sleeping, I enjoy dreams, no matter what type. They’re my entertainment. I could feel it in my lower back again, radiating around to the front. It could just be my back even though it feels like I have been crushed between metal. I don’t even want to think that it could be my kidneys. It’s probably my back.

Wood Roses in bloom

Wood Roses in bloom

I thought about how there are different types of pain. The title for this blog came from a “Zine” that we had to create in groups of about four students in one of my college English classes. We all liked tattoos and body piercings so we worked on a zine which was about “pain,” which we all knew was really no pain at all. Just a little “pinch” or reminder that we are still alive but unrepresentative of what real pain is, with a “present” of a tattoo or piercing at the end. If I only knew to not take anything in life for granted. Every single sensation, no matter how “ordinary.”

I also never knew that there are a wide array of different types of pain. Inflammation of any and all joints, various back pain, gallstones, nerve damage in the feet, excruciating headaches, neck & shoulder pain, a spinal tap gone bad, and I’m sure there are more that I’ve missed. Pain where we never knew there could be pain. Sometimes if someone I’m close to asks how I’m doing while I suffer in silence with my pain, I’ll say something like, “If you cut me right above the waist and cut my head off, then I’ll be fine.” The only place I didn’t have pain that day was my mid body. They laugh, we don’t have to talk about it anymore, and we go on to our silences or whatever else we may have been doing. It works for both of us. 🙂 Today we can keep my legs, just get rid of anything above my belly button. 🙂 What intrigued me was that not all pain medicine works for the same thing. I did not know this. I think it’s a gift not to know this. Ignorance truly is bliss.

You would think that the stronger the pain medication, it should be able to help with everything up to that pain level, right? Wrong. Pain medicine that I usually use for my back doesn’t work for inflammation of joints, nerve damage, or headaches. It’s also a hit or miss, like everything else. Sometimes it works, sometimes it doesn’t. If it at least alleviates the pain and hopefully knocks it under that pain threshold that makes it “tolerable” is preferred over the suffering. Ibuprofen, while I was taking it (before this “Lupus Hissy Fit” happened), actually worked for my pain due to inflammation; while Tylenol & pain medicine didn’t work).

The bad headaches, forget it, the only thing that I found that works 80% of the time (don’t get me wrong, I’m extremely and eternally grateful that my Neurologist gave this to me) is Relpax; however Sumatriptan helps 60% of the time. But boy are those expensive and my insurance will cover it once per month and I can’t afford to pay over $200 out of pocket for 6 pills. So I have to pick and choose which headaches I will take a pill for or I will run out and have nothing, or Sumatriptan until I run out of that. Sometimes I’ll get these headaches everyday. If they’re “tolerable” headaches, I just take a Tylenol if I must.

There is nothing for the nerve damage in my feet (Morton Neuromas). Boy do they suck big time. At least I’m not dealing with that right now, I think I mentioned it before, but it was strange, since December’s flare and medical issues, my pain from the nerve damage has gone away for the first time in about seven years. I had to actually count to guesstimate as I don’t remember how long it has been. My Podiatrist tried Cortisone shots in my nerves. He said my options were: Cortisone shot, surgery, Orthopedic shoes. I knew better shoes weren’t going to work because I was in tremendous pain as a lie down in bed wanting to sleep but too much pain to be able to think about anything else. And there was nothing wrong with my shoes. I never wore heals. I loved my boots, Dc Martens, Diesel, Converse, and other shoes. I eventually bought inserts but that didn’t work either. I finally found some really good inserts (I should’ve written down the name and all of the product information so I could find another one now that I need a replacement) as they are very comfortable. The Cortisone shots were hell. I don’t mind needles at all, but those shots scared me because they were the most painful shots I have ever had, seemed like it took forever to administer, and sometimes were more sore than the nerve damage. Or at least that’s what I would be thinking at the moment of injection. The first shot was a miracle (after about an hour and the pain from the shot started to subside). I lived “pain free” in my foot again (at this time I only had it in my left foot) and I was quite happy about that. At that time in my life it took me a long time to report anything new to my doctors, especially if I didn’t have an appointment. I had become so accustomed to doctors shrugging and either saying that they didn’t know or “it’s just the Lupus” that it was a waste of my time to ask. I already knew the answer. “It’s just the Lupus.” And an answer wasn’t exactly what I wanted. I wanted the doctor to fix it and make it go away. So I had been walking with the pain in my foot for about two years before talking to my PCP who gave me a referral to see a Podiatrist. Unfortunately for me, the shot wore off in a month. It’s apparently different for each individual but he had said it would last some people up to 6 months. I was hoping I would be amongst those people. I wanted to avoid surgery so the shots seemed like my only viable option (other than just suffer, which wasn’t acceptable anymore). My Podiatrist gave me the second Cortisone shot and I was devastated when it did not work at all. When I called him to report this he said that if I wanted to try again I would have to wait a month. A month! When I actually thought about how long I had to suffer before we could reattempt getting rid of the pain (which was not guaranteed), it seemed like eternity! I was so frustrated! I eventually got the third shot but was advised that if this didn’t work, he would not suggest doing it again but would suggest surgery. I didn’t go back to him for a few years and just learned to adapt to a new pain, one that I liked least of all and was constant. I finally went back after developing what I felt was another Morton Neuroma in my other foot and after years of that pain as well, couldn’t stand it anymore and made an appointment for him to officially diagnose it and then figure out a surgery date for that foot which was way worse than the first. It was reported that the surgery had a 95% rate. I was hopeful even though “exchanging numbness for pain” wasn’t reassuring or even a “fair deal,” but I just wanted to get rid of the pain and if that meant being numb, then that was fine to me. It sucked when I fell into the 5% group and now had pain, numbness, tingling, and shooting nerve sensations which didn’t “hurt” but felt like I was being shocked. So nothing worked for alleviating the pain in my feet (except getting “sicker” and having to deal with new diagnoses and health issues).

So ask me if I like pain. Absolutely not!

Two Wood Roses

Wood Rose

Wood roses are very interesting to me because they’re just… “different.” I never even knew that they bloomed like a flower (the first photo of the yellow flower). I always thought that they looked like “wood” until a few years ago when I wanted to photograph one so my stepfather took me to a place he knew that they grew and I took several photos.

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