Kidney Function at the Point of the Next Step… Plus Talk Story Time

This “flare” has already lasted for over 3 years. I wondered how much longer this would last- forever. “It wasn’t like this the first time,” I thought. Not only is Lupus experienced differently by each of us, it is possible for us to experience it on different levels. Even though I knew that there was no cure for either Lupus or Glomerulonephritis, I think a part of me hoped mine would not be so bad, that it would get better, or I would be pleasantly surprised that miracles do exist. I remember not being able to wrap my head around the fact that I had a disease that I would need to see Specialists for but they could no longer cure me or make me better. All they could do was attempt to slow down the progression of the disease. I realized my mentality had always been, if you are sick you go to the doctor and they make you feel better. But that changed along with my diagnoses.

It has been three years since my kidney function has significantly diminished and my new Rheumatologist put it in the terms “CellCept has failed.” The consensus is that they want me to undergo low dosage chemotherapy (Cytoxan infusion) with Prednisone. In the meantime I am back on “full meds” which I mean all additional kidney meds I had from the beginning: 3,000 mg of CellCept a day instead of 1,500 mg, started off on 60 mg of Prednisone on 11/18/2016. I felt like it was suffocating me. My PCP let me go down an extra 10 mg which I was grateful for. And also Bactrim (3 times per week). We are doing this until the beginning of February 2017 when I see my Rheumy again. He wanted me to think about it and also consult an OBGYN doctor about early onset menopause and the possibility (or not) of freezing eggs for later.

I really did not want to do this. When my Nephrologist mentioned Cytoxan again back in November, he turned around to look at me and said, “You aren’t fond of Cytoxan?” I thought that was the most asinine way to put it. Who is? Fond? Is that really the word that he was looking for? I am fond of a puppy. Not fond of having every cell in my body killed and having to give up what I consider to be too much to have to give up. People mourn in stages so I never know if I will change my mind from one moment to the next. And it is not as much about “mourning” for losses that I feel I have or will incur, but I believe it is more about unexpected changes.

The moment I made up my mind was when my Rheumy said, “The CellCept has failed and I don’t want to see you on Dialysis when you are 50.” That made me stop and think. 50? Wow! What happened to all the years? Granted, I’m 42 years old so closer to 40 years old than 50 years old! But my birthday is next month and 50 years old would be in another 7 years. That is not that far away. I also know that is not necessarily true. I have seen my lab work and how it dove, dialysis could happen sooner than 7 years and I need to do whatever I can to live a decent life.

In the meantime being at work full time & taking all of these meds is kicking my butt. I was falling asleep by Friday and was useless this entire weekend. My Potassium is high so I need to avoid high Potassium foods and try to reduce it. The last lab result was 5.9. I retest between 12/2- 12/27. My body feels as though it is totally exhausted from working out. But there has been no work out. J The smallest things seem heavy and take up so much of my energy. More than ever I now know what it feels like when your skin hurts. I also have to get an x-ray of my left knee due to more frequent pain, mostly inflammation that lasts for about a week and makes it extremely painful or impossible to walk. My PCP wants to do an x-ray first to check if it is Arthritis.

In the good moments, I’m making gemstone jewelry and still teaching Mia new tricks. Among other mini adventures. I was thinking about making a vlog. I want to do what I can to raise awareness for Lupus. I have always done something but I want to do even more. I think people are more engaged with visuals- I am and I think it’s more enjoyable. I like those photos online, “The Faces of Lupus” I think they are called. Eventually I wanted to maybe make a video of my story of Lupus and everything associated with it (I haven’t thought of all the details yet) but it can be a short video. If it was something that others would like to join me in, of course provided that I can make something semi interesting to watch, or actually more so because I really do not like to be in front of any cameras especially not video cameras and I’m self conscious especially now but why not do it  now before I forget what I felt like even before the chemo? And I don’t mean to sound vain with everything I mentioned. It is more what others have said to me or at me the last time around with Prednisone. And I’m more concerned about making it awesome because I want people to watch because that is what will bring awareness and hopefully an idea of my experience with this medication for anyone seeking for it. And then if I can get others to join me, I would like to eventually have them all available all in one easy to find place. The website idea is just way too much info and I have to remember some things are only interesting to me. 🙂 Lol. But it will interest someone. I believe this would be another way and opportunity to give a face to Lupus.

I want to try different editing options if possible (any easy to use video editing programs you know about) and practice so I will be better by February. Then I can maybe record as much of the process of this type of chemo as I can and as I am allowed. But if I can’t show it at least I can explain that part. I have and had so many more questions that randomly pop up every day since I found out. I wanted to know the experience and results of others with the same disease and the same type of treatment I was being presented with, just to get a better feel for what I may be up against. The reason for all of that is because it was difficult finding information or the “more information” that I wanted. I searched for videos and found several different people. But I still wanted more videos. 🙂 None really told me what I wanted to know. Actually there was one good one who had a bunch of video vlogs but this was a young lady that went through chemo for cancer so I know her treatment, including dosage and frequency was probably longer and higher than mine will be. And therefore the effects would probably be harsher on her. She was funny and positive throughout. I loved her outlook. I don’t know it off hand but if anyone is interested I will look for it.

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It’s Been Forever… and a Day

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12 October 2016

It is now December 13, 2016. Time flies by quicker every year. One thing I have always known but understand on a different level now is that with Lupus things never stay the same. It is always changing. Even if it’s just the pain changing types and pain levels or moving from one part of the body one day and then be something different the next.

I am more forgetful than usual and there are too many things that I want to do but do not have the time, energy, or resources. Time and energy are two great resources. And not feeling sick often.

I will have to see where I left off to see what type of update I need to make and then for the new things. Lately I’ve had a few epiphanies. I really must write these things down as I’m thinking about things.

 

I’m having a terrible time on Prednisone this time around. Im not sure if the severe pain (cramping?) in my legs and feet are from the Prednisone or a combination of restarting that on November 19th along with the full dosage (3,000 mg of CellCept). This is to carry me over to February 3rd when I see my Rheumatologist again.

I will have to elaborate on these things more soon. I want to say tomorrow but I don’t want to not have the time. I’m really going to shoot for at least 3 blogs a week if not more. There is also a project I want to start working on really soon and will share that as well.

I have just restarted making jewelry in the past month or so for my business. I just had to stop for a while when I was sick all the time. The biggest thing other than my daily pain that was always there was my debilitating fatigue. I have spoken to all of my doctors and specialists & because of all of my conditions and not being able to give me just anything especially if it could affect the heart, my next option is to call Apria Healthcare (Boo! Hiss!) and have them take my CPAP Machine  to test it and make sure that it’s working properly. And if not then adjust it. In the meantime, I had spoken to my PCP about possibly getting B 12 shots if he thought that might help. I need to double check on the dosage but I’ve been taking the shots once every two weeks (so twice a month) & it did take a little longer than anticipated for it to work for me but it seems to have helped a little. However being on so many medications especially the Prednisone lately is kicking my butt. I just got an inhaler because I’ve been having trouble breathing, I’m uncomfortable in so many ways, of course the moon face. And I am sooo grouchy! I try my best to keep it to myself. So far so good, I think. 🙂

And my PCP moved out of state. I was devastated. I’ll have to dedicate a post to him. The good news is I found a female doctor at the clinic that I work at. She’s an Internal Medicine doctor and I really respect her. She will make time for me on the same day even if I might have to wait. But I don’t care. When I saw one of my first Rheumatologists at 27 years old, it was always a 2 hour wait AFTER my appointment time that I saw him. But it was the way that it was. Little did I know  that I could have looked for another Rheumatologist. Maybe it did cross my mind but was “too much effort… to little reward.” Just not worth the time, new referral, and wait to possibly be in the same situation or worse elsewhere. Strange how I don’t even remember all of their names anymore yet there were quite a few. Especially Rheumatologists.

Oh did I already say I finally have a new Rheumatologist and I like him? He’s very smart, answers questions, I was impressed with the most complete blood panel I have ever seen. As far as Lupus, Sjogrëns, my kidney function, the C Complements, and some things I have never heard of.

I guess a lot has been going on. I have stayed out of the hospital for over a year. 🙂 But I did have two ER visits in October.

June 6 of this year marked a full year of me not smoking another cigarette. I do get afraid sometimes because it feels like it would be so easy to slip and to just go back and have a difficult time quitting again. So I really have to stay away. It was definitely something that was hard for me to do but was and has been very rewarding.

I have until February to decide on a plan my Nephrologist wanted my Rheumatologist to talk to me about. Cytoxan infusion with Prednisone (Why?!). I have already spoken to an OBGYN who my new Rheumy referred me to talk to me about what I need to think about from their standpoint. The main topics was do I want to have kids and possible options prior to treatment and early menopause. (I really don’t remember signing up for this).

I need to try to sleep through this leg pain because my schedule changed to where almost everyday is an early day. I was never known to be an early riser and if I don’t set at least five alarms I fear that I’ll sleep through it or turn it all off in my sleep. Because I won’t remember any of it later.

Skateboarding!

I forget that I really should act my age. I am too old to be doing certain things but I have been telling myself that since I was probably 30 so I know I won’t and do not want to change. I have way too much fun and get to laugh at myself. And if I didn’t still laugh sometimes I think I would be in trouble. So never stop laughing. Do whatever you need to do to put yourself in that “happy place,” in the present moment. Some people like to watch funny movies, comedies, laugh with friends or various other activities. That’s one thing I need to remember especially when I am on leave from work and at home.

Okay, I will write more soon and I intend to make this a habit. I really enjoyed blogging and it did help me and I met other wonderful Bloggers through their writing and the kindness they showed, or their honesty, and being alone but not amongst all of you who understand what living with Lupus is like. I have been thinking about that a lot too. A lot about a wide variety of subjects and what is most important in Life. Or what is not important.

You May Think I’m Crazy… Remembering My Dad

Every once in a while my dad still pops into my mind from out of the blue even though he has been gone for over 6 years now. I wondered if there was a Eulogy at his funeral and don’t think that there was one. I was too much in grief and denial to remember much about that day.

In 2008, I decided that this was the year that I was going to visit my dad. It had been a long, long time that I had seen him last… over a decade. It was difficult to visit because of my fear. He was an alcoholic and although in the recent years our relationship had been better, healed in ways, I didn’t know what to expect when I was actually there. Every year I wanted to visit, but didn’t. 2008 was different because a close friend told me that I should go, that he wasn’t getting any younger. He was a strong man though. He was only 74, he still worked at his restaurant establishment, and was building a patio that went all the way around the house. Our phone relationship was better because he learned what not to talk about if he still wanted to have a relationship with me since I had to cut him off before. He stopped talking crap about my mom, being persistent and angry about getting my sister’s phone number, he stopped calling when he was at the point when he was a “drunk dialer.” We had great conversations and I remembered the dad that I loved as a child. Our relationship was even better because I was older and we could talk about more things. If I had any questions at all about world news, politics, religion, or whatever my current interest was, he was the one that I turned to. He knew everything.

That year in late March I went to California for a weekend trip. It was for my friend and a bunch of her family members that had birthdays close together and they were making one big party of it. My mom, step-father, sister, and her son came along as well. My dad called me while I was in California but I didn’t answer the phone. I figured I would call him back when I returned home to Colorado. Our last conversation had been about two weeks before and it was awesome. We talked about so many interesting topics, and laughed heartily about something that I don’t remember anymore. I felt so much love for him in that moment and couldn’t stop smiling, I could sense him smiling too. He was feeling the same way and told me how much he loved me and I reciprocated that love for him. I had told him that I had decided that when I die, I would die in my sleep and I thought that was the best way to go. He agreed.

When I returned home and to work, I meant to call him back but was always working, on short breaks, or thinking about it too late at night to call. He called me at work that Wednesday but I couldn’t answer because I was in the office. A couple days later my phone rang with an 800 number attached to it. I really dislike telemarketers and am on the National Do Not Call List. I always ignore them and let the call go to voicemail but I was pissed off and answered it abruptly. “Kimi?” I heard a soft timid voice on the other line. I was quiet for a moment because no one except for my family and a few others (that don’t have my phone number) call me by my middle name. “Yes?” It was my cousin Jennifer. “Sonny passed away a few days ago.” My head started to spin, and I didn’t know what to think. My dad couldn’t have passed away. He was supposed to live longer, I wanted to see him, I ignored his calls. “What? What do you mean?” Jennifer told me that my dad was working on his patio, went to take a nap, and never woke up. They thought he died of a major heart attack and that he didn’t feel a thing. She asked if Becky, my dad’s long time girlfriend had called. I told her she didn’t (not realizing that the phone call that I got on Wednesday was Becky calling me from his phone since she didn’t leave a message). Becky had told the family that she tried to reach me multiple times (once) and that I never returned her calls. She did everything, she said, to get in touch with me. I had to go to his funeral, even though I didn’t have a lot of money and didn’t like to ask for time off from work. But he was my dad, this was important, I didn’t want to regret not being there. I left work early that day, I shouldn’t have been driving, I called Becky and talked to her about my dad. I told her I was going home and was going to book a flight to South Carolina. She told me to let her know my itinerary and she would pick me up, no problem. I searched online for a while, on different websites, using different dates, and even tried different airports, even ones in North Carolina. All of the tickets averaged $1500. I eventually lucked out when I found a ticket for a little over $500. I tried to call Becky and left her a voicemail with my itinerary and never heard back from her so I called my Aunt and she said that she would pick me up from the airport.

When I arrived in South Carolina, I found out that I had just missed what I believe was a viewing, or some kind of pre-funeral thing for my dad. I was upset that Becky didn’t tell me about it or I would have surely booked an earlier flight. I stayed at my Aunt’s house next door instead of with Becky in my dad’s house (their house now since she lived with him) and went over that night. A bunch of people congregated in the house and I sat on the sofa. I remember being full of anxiety, still wondering if my dad would walk into the room any minute now. I ended up laying down and asked Jennifer to sit with me. She kind of gave me a strange look. I found out shortly after that it was because Jennifer was thinking that I was laying on the couch that my dad died on several days before. When I realized it, I felt more comfort than anything else. Earlier when I was just sitting on the couch, I felt as though someone was hugging me from behind, that was the first time since I heard the news that my dad passed that some of the anxiety went away.

The following day we went to the graveyard for my dad’s funeral. He was the only one in our family plot that had been cremated, as he had wished. It went by so fast and I don’t remember much. Just how annoyed I was. I was sad that I would never see my dad again. I was annoyed at the man who opened the box which housed the remains of my dad. WTF? I was annoyed at Becky’s family members that I had just met telling me again how it was “a shame” that my sister didn’t come to his funeral. Even though I lied to them and said that she really wanted to be there but couldn’t take time off of work. I didn’t have the time or energy to argue with Southern gossipers at my dad’s funeral service. Then there were these kids that I didn’t know, jumping on the graves of my Great Grandparents. Everything was about Becky and her girls and how my dad was like a father to them. Whatever. They were crying as if they had lost their own dad, and they were older than I was. I lost my dad and I had no tears because I still couldn’t believe it and grieving is a private matter. I wondered, as I watched them wail and moan if I was a bad daughter not to have “loved” him as much as “they did” since I was not displaying any emotions. That night we all went over to my dad’s house, everyone was drinking a lot. I had one drink just to calm my anxiety and despair. When it was late at night, Becky had disappeared. As I was ready to leave for the night, I quietly knocked on the bedroom door and she said to come in. She was laying in pitch black darkness on their bed and told me to come over. So I layed down with her and we talked about him. We talked about his drinking and what it did; that he tried to quit but got sick when he didn’t have a drink; how apart from the drinking, he was an incredible man and would’ve been the perfect man. She held my hand and I felt a little better and we just remembered my dad. I had a strange feeling. Like my dad was in the room watching us. It wasn’t creepy, it was surreal. I’ve been able to feel bad spirits or just eerie spirits, but this was the first time that I felt a good spirit. And I liked that my dad was still here, even if not in physical form. I looked at the bedroom door where I felt he was standing; I strained my eyes in the pitch black dark, then squinting, to see if I could see him. I couldn’t. “I feel like dad is in this room,” I said to Becky. “Yes, he is. He’s sitting right here next to us,” she said. “No,” I thought, “He’s by the door.” After a little time went by, I told her that I was going next door and would see her tomorrow. I stepped out onto the porch where I was stopped by one of my dad’s good friends. She said, “Your daddy is here… your daddy is here!” I dismissed what she said, though I wanted to believe it, but she was really drunk. I wanted to believe it all. That my dad was the one that wrapped his arms around me the first day I was there, and that he was in the bedroom the night of his final service, but I tend to dismiss things like that until I can’t dismiss them anymore.

After I came back home to Colorado, I remembered a night that I felt like someone or something was looking into my apartment from the picture window and the bedroom where I quickly retreated to. But I lived on the 2nd (top) floor. I later realized that this happened either on the day my dad passed or a day later. One late night I walked out of the room that was our office and felt like I walked through a wall of cologne. It smelled good. I wondered if my mind was playing tricks on me (even though it was so strong) and backed up, seeing if I could still smell it. I couldn’t. So I dismissed it until I spoke to Becky about a week later. She told me that she felt like dad was still “here.” She said that sometimes it felt like he was sitting on the bed with her, that she could smell his cologne on occasion, and once thought she heard him say something to her through the closet door. Yeah, maybe it’s weird, but I believe my dad was there all of the times that I felt his presence. Though I tried to dismiss it, there is no way for me to dispute it anymore. I bought Patrick Mathews book, “Never Say Goodbye,” which also reaffirmed that I was not completely “crazy.” I rarely have dreams that I remember or that feel so real. I had a couple of dreams about my dad teaching me things like he did when we were children. What he said in the dream was something he never taught me and was not true because of what I previously believed. I decided to Google it to check if there was any validity to what he told me in my dream. I found different sites about it and it was in fact true. I was sad the day that I no longer felt him and no longer had him “visit” me in dreams.

A few years later out of the blue “his song” played over the radio (by this time I had moved back to Hawai’i). It’s an old song that rarely is played at all anymore (however I even heard it once in a grocery store in Colorado which was strange not only because of what I just mentioned but because this song is from an artist that lived on Maui. I always thought they were signs of him being there even though I couldn’t feel him. A lot of things made me start thinking about him and I didn’t know why. Was he trying to say something? I heard about a lady that was a Psychic and was told how she was really good and told some friends of mine things that she couldn’t have possibly known. I decided to get in touch with her and she came to my house. I was very guarded at first, tending to be a non believer, and waiting for her to prove herself to me. She told me a lot of things that made me believe that she was legit. Things that she could not possibly know about my grandparents on my dad’s side or about my dad. So I was open to what she had to say. One of the things she told me that stuck with me was that my dad wanted my sister and I to know how sorry he was and wanted us to know how much he loved us. It made me cry. I knew exactly why he was saying sorry and why he might feel the need to reinforce that he did love us. He didn’t need to apologize to me, I didn’t know everything but I knew a lot about how hard his life was. Even though I didn’t condone the drinking and how he acted when he was inebriated, I knew that was his way of dealing with his pain. I excused him for it, even though he hurt those that he loved the most. My sister couldn’t do that. And I understand her choice too. I just feel like it was a shame that things turned out the way they did with their relationship, and that my dad never had the chance to meet his grandson (my sister had her second son after my dad had passed). She told me to get a Jade plant and that my dad would be around the plant and I could spend time with him there. I had no idea where to get a Jade plant from, or how much it would cost. I texted my cousin about the session because she was interested in maybe seeing her too depending upon my experience. I mentioned the Jade plant and she told me that she had just put part of a Jade plant in a pot and I could go pick it up. I still have it. Dad and I

I decided that my dad needed a eulogy. Although six years too late and unedited, this is what I wrote for the day:

 

As I was “taking a break” outside, I thought about my Dad and all of the wonderful things that he was. I couldn’t remember if someone wrote him a eulogy, as everything seemed so surreal at the time. I don’t remember much about his funeral service. Just that I couldn’t believe that he was gone and that I would never see him again. I was thinking about visiting him in June, but June never came for him that year. So I will make up a eulogy for him, although it is not really thought out, these are the thoughts that come to my mind at this moment, unedited.

This is for Ruben Jr., also known as Sonny, Michael, or Dad… depending upon who you are and at what time period you knew him. He was one of the best men that ever lived in my book. You could not find someone who was more loyal or faithful. Someone who would do anything for those that he loved as well as for those that he didn’t know well. He always generously gave what he could: whether it was his help that was needed, someone to talk to, or money (which a lot of people asked for), and gave it willingly and freely knowing that he would never be repaid. He was a really hilarious guy who had a great sense of humor and made many of us laugh heartily. I can still see his smile and hear his belly filled laughter. It’s one of the things I miss the most. He also had a sensitive side that he shared with a few. He loved the movie “Fried Green Tomatoes” and I will never forget watching it with him, loving him more after seeing how much he cared about people, especially people in need. He didn’t care about his looks, or what others thought about him. He knew who he was. Many times he would go out with overalls on. I loved his overalls. And I loved that all that mattered to him was how he saw himself and wore whatever he was most comfortable in. Some could have looked at him like he was merely a “country bumpkin” who had a limited education. But dad was one of the most brilliant men that I have ever known. His resume is impressive, job titles and positions that he held in his life were top caliber and you had to be more than intelligent to be able to do what he did. He also had a great thirst for knowledge and read up on many things, including Jesus (as he searched for the real Truth), ancient history, and the list goes on. He was also very creative. One day he showed me a piece of old machinery that he said he was going to make into a beautiful desk. I looked at it, disbelieving this was even possible. But he did exactly what he said. When he was done, a beautiful desk (with a hiding spot, I love hiding spots) stood before me. He even made me a dresser, since there were no closets in my room (when I lived with him). The dresser was awesome. On the side of it was a bookshelf. That was exciting in itself. But then there was more… he showed me a hidden bed on the top of the dresser. The bookshelf also served as stairs to get to the top of the dresser! Before he passed, he was building a patio around his house. I saw scribblings he made, a sort of blueprint. He wanted to have a little gazebo, as he always loved Japanese culture. He even was a “Mr. Miyagi” with bonsai trees. This is something I didn’t know about him but wished that I did. As kids he used to take my sister and I on drives to his favorite places, which quickly became my favorite places. My top two favorites were: Kukuiolono Park and the refuge outside of his hometown. I will forever miss my dad and regret that I never had the chance to see him one more time. However the memory of him, although bittersweet, will always make me smile, sometimes through tears.

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

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. 🙂

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An Okay Day

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

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

Down Syndrome Awareness Day

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

Yesterday’s Misadventure

Taking a break from cycling.

Taking a break from cycling.

Lovely Life

After yoga break on the way home.

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

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

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

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

New Page

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

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

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

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