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.

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Pain from Morton’s Neuroma and Plantar Fasciitis= Good Times!

Colorado Pre-Surgery

Colorado Pre-Surgery. I love my crazy socks. Since it was a slow day I decided to pull up my pants and take a pic.

As you already know, the pain from my nerve damage is back! Because I had a “break” from it, I now realize how horrible it is and that I had become somewhat “accustomed” to it. Not only do I have this excruciating pain in my toes and balls of both feet, but I also have pain in my heels which I am assuming is Plantar Fasciitis (probably from the way I now walk because of the pain and not being able to bear my weight on certain places on my feet). I do not really care what it’s called, it just hurts! Lately I’ve been at a “9” on the pain scale (and I have a high pain tolerance). The reason I won’t give it a “10,” is because I’ve experienced pain on a whole new level numerous times since I’ve had Lupus and just when I think that pain could not be any worse, something else will prove me wrong. To think that pain can be any worse frightens me a lot!

Recap: I first experienced this very intense pain in my left foot somewhere around 2006. I just dealt with it because I had become used to going to different PCPs and Rheumatologists for answers to new symptoms and pain that began to introduce themselves into my life and was usually brushed off. Their answers were usually, “I don’t know,” or “It’s probably just the Lupus.” Really? That’s it? Not only did they not know and go on to the next subject but they wouldn’t even try to offer any allevement. It was a waste of my life and money so I would only go to my doctors for their follow up appointments or if something was exceedingly bad. I figured that there was nothing that could be done. I was referred to a Podiatrist who gave me a few options and not wanting to undergo surgery, I opted for the horrid cortisone shots. Not only was it the most painful shot I’ve ever had in my life but it didn’t work after the first shot! It was a “miracle” shot until a month later when the pain returned. The next two shots didn’t work at all so I just tried to deal with it as the only other option was surgery. Around 2008, I had the same type of pain in my right foot and it was worse than the first Morton’s Neuroma. I dealt with it, gritting my teeth and making tight fists as I dug my fingernails into my hands. I had heard that if another part of your body was in “pain,” then it would take away from other pain one may be feeling. (It didn’t help). I didn’t have to be on my feet to feel the pain, even if I was sitting in a chair, or just laying in bed, the pain was always there. Many nights as I laid in bed, I couldn’t remember how it felt to not have this pain. I wished that I could have just one night without pain and promised myself that I would cherish every second of it. When it became much more than I could bear, I went back to the Podiatrist, finally willing to have surgery on at least the right foot and eventually later I would do the same for the left. The surgical plan was to cut the nerve in my foot which would leave my foot numb. I was exchanging pain for numbness. Not the most favorable plan in my mind but I just wanted it to go away!

I waited until the following year to schedule the surgery due to work. They didn’t have anyone to cover my position while I was gone, so I waited until I just couldn’t stand it anymore and told my manager early in the year (late January) that I needed to schedule this surgery as soon as possible. She told me that she was using her vacation time in March and that I would have to wait until April to schedule it. I was pissed! I could not believe that she would make me wait another three months when she knew I had been dealing with this for so long! In April when it was time for surgery, I was extremely grateful that my mom came to help me for two weeks since I was living alone in Colorado. All of my friends who said they would be there to help didn’t visit or even call to see how I was doing except for one person who brought me flowers after I returned home from outpatient surgery.I really appreciated her thoughtfulness. I lived on the second floor of an apartment complex which made it difficult to go out to buy groceries or go to doctor appointments. I couldn’t drive (something I did not think about until after surgery) so my mom’s willingness to fly out to help meant so much to me. I didn’t even have to ask her, which I wouldn’t have because of the inconvenience and the price of airline tickets.

Chances of the surgery being a success was 90%. Pretty good, right? Well I fell under the other 10%. So not only is my right foot numb and tingly but it still hurts like hell! One morning within the first week after surgery, I woke up in so much pain that I broke down and cried. I have only cried twice from pain in my life (excluding when I was a child. I’m sure I must have cried then) and I was also way beyond frustrated. I couldn’t stand up and was on the ground. I had to use the bathroom but didn’t want to ask for help and refused my mom’s offer as I was determined to do this by myself. It was harder than I thought as I tried to drag my body on the floor towards the bathroom. Then when I got to the toilet, I could not get up. Finally I let my mom help me. I’m very stubborn and proud, I did not want to admit “defeat” or that I required assistance to do something so simple at the age of 35.

I had mentioned the pain in my feet to at least two different PCP’s, two different Rheumatologists, a Podiatrist, and an Orthopedist. Because no other options were mentioned or it took so long for new options to be introduced to me, I came to the conclusion that this was my lot in life. I thought that nothing could be done about it, “it is what it is,” and I would just have to deal with it. Now that the pain has returned after it miraculously disappeared for three months, I realize to live like this is absolutely asinine! Something needs to be done and I’m over it! I mentioned it to my nurse last Friday when she was in my department using our fax machine. She told me to send a message to my doctor. It was good that she was there and told me to email him or I wouldn’t have. She made me feel like this is a legit thing to discuss more in depth with him. She asked if I had heard of Gabapentin. I then remembered that I did. When I was still in Colorado, my PCP finally mentioned it (after years of telling her how bad the pain in my feet was). All she did was refer me to a Podiatrist and then an Orthopedist. When she mentioned Gabapentin, she wanted me to first try two other medications before talking more about it. I was angry that she failed to mention anything (even the other two meds) earlier. I was thinking, “Are you kidding me?” Because apparently there was something out there that could possibly help me and “only now” was she mentioning any of it. I tried the other two medications first like she suggested hoping that it would help but began to experience more pain. I left a message with her receptionist about it and she called me back to say that it was probably one of the new meds and told me which one to stop taking. I continued with the other but stopped that one on my own when it wasn’t working either. Somehow the option of Gabapentin had slipped my mind. It was probably because I was depressed and also stressed out at work and in my home life.

So on Friday I emailed my current PCP and asked him what he thought about Gabapentin. He emailed me back and told me to set up an appointment to see him to discuss the options of either Lyrica or Gabapentin. I tried to research both of them but was overwhelmed with the information, pros and cons, and side effects which I may or may not experience. I figured I would just speak to him as soon as I can get an appointment. I am looking forward to my next visit with him hoping that I can get some relief from at least the nerve pain. I’m also wondering if the pain I sometimes get in my left shoulder that lasts 3-5 days is some kind of nerve pain as well. So far none of my doctors have an answer for that one.

My PCP is leaving our clinic (it’s so convenient to be located on the same floor right next to his) and I really like him. He will still be practicing but will be on the other side of the island. If I was on the mainland, the drive would not be so bad, however on an island with one main road where one accident can majorly impact traffic on the whole island and just the way that traffic flows, it’s not an ideal drive (especially since I do not like to drive). However I am willing to drive to see him because he knows me, my condition(s), listens intently, answers my questions and if he doesn’t know the answer he will either consult other doctors or refer me to a specialist who may be able to help, and I am comfortable to tell him anything. I don’t want to take my chances with another doctor. I told him on our last visit that I wanted to keep him as my doctor if it was okay with him and not to scratch me off his list. He said that was fine, he wasn’t going to drop any patients that still wanted to see him, and that he learned a lot about Lupus from me. I told him he would be a pro soon enough. 🙂

The Very Inspiring Blogger Award

very-inspringaward

I was very surprised and humbled when I received this award from breakdownchick at Labeled Disabled. It encouraged me to keep writing because I didn’t think that I was inspiring nor encouraging. I felt like I was just complaining about everything and being negative so I stopped writing for a while. I was especially honored because I think that Labeled Disabled is an amazing blog written by a brave and inspiring soul. I enjoy reading her posts and wish that I could share even half as much as she does. I still  hold back many of my thoughts and feelings because unlike her, I am afraid and still haven’t confronted many of my experiences that I have chosen to suppress for now, knowing that at some point I will have to face my past memories which still affect my current life. If you haven’t visited this blog yet, I highly recommend checking it out.

Here are the rules for accepting this award:

  • Thank and link the amazing person who nominated you.
  • List the rules and display the award.
  • Share seven facts about yourself.
  • Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
  • Optional: Proudly display the award logo on your blog and follow the blogger who nominated you.

Seven Irrelevant Facts About Me:

1) I am half Japanese and the other half consists of Scottish, Irish, German, and British. My Great Grandmother on my Mother’s side was a picture bride. So in Hawai’i, my generation is considered Yonsei (which is the 4th generation).

2) I travelled a lot since I was 6 years old. Mostly because my parents divorced when I was about 4. The first long trip my sister and I took was to South Carolina to visit my dad during our summer breaks. We’ve also visited many states in the US and Australia and New Zealand.

3) I have lived in four different states: Hawai’i (on the islands of Kaua’i and O’ahu), South Carolina, Las Vegas, and Colorado. I finally returned home on my mom’s birthday in 2012 and am so happy to be back where the majority of my family lives.

4) I dropped out of college at UH Manoa in my last semester of my Senior year- one of my biggest mistakes. I did go back to school and graduated from UNLV in Las Vegas but I had to take way more than 4 classes since they didn’t carry over all of my credits and had other requirements. It was worth it even though I do not use my English degree.

5) The most I have ever been hospitalized in a four month period was three times (December 2013- March 2014). I do not like green eggs and ham, I do not like them Sam I Am.

6) I really like office supplies. I don’t know why but I get really excited when I buy them.

7) I have issues with people being in my personal space and get agitated. One random example happened just now. My step-father just came to my side of the house and was looking by my sink/counter and started to walk away. I asked him if I could help him find something. He said no, he was looking to see if my mom brought a small white dish over and laughed. Arrgh. (So yeah, since I moved home I’m living with my mom and step-father. I was going to move out late last year and then had a major Lupus flare and couldn’t work for a while. Now with the extra medical bills (hospital, holter monitor, doctor visits, etc.) and using my credit card when I was on a leave of absence, I will have to wait for a while. Then I will have my privacy and won’t have to worry about my step-father sticking his head in my bedroom door to see if I left and Mia (my dog) is at home by herself, him not listening to me and over feeding Mia snacks all day, my mom coming into my room and peeking in the bathroom to ask what I’m doing when it is obvious since I am sitting on the toilet, and all that good stuff. 🙂

Fifteen Inspiring Bloggers:

I don’t follow many blogs so I won’t be able to come up with that many. However the ones that I list are definitely awesome!

1) Labeled Disabled (I know she nominated me, but she is truly inspirational- so hurry up and visit her blog! She writes about her life experiences, “mental disorders,” poetry, etc.) 🙂

2) Nitya Nata (Another amazing blogger who writes about Lupus, other health conditions, and her trip to Europe- loved it! And more!).

3) Flux and Flow  (Jasmine is truly inspirational and has a variety of topics from Lupus, Café Monday (random excerpts from her journal), travels, current events, etc.).

4) Lupus Really Sucks! (I find this blog about Lupus inspiring because she writes about the disease, how it affects her, and portrays Lupus for what it is. Lupus does suck! A lot!)

I know I’m missing some but I just can’t think right now. This has already taken me at least an hour if not longer, with breaks in between.

A Hodgepodge of Life Lately

Last Thursday I went to my follow up appointment with my Nephrologist. I was excited and scared at the same time. I was hoping that my labs were still looking good and that I could continue to wean off of Prednisone (I’m down to 10 mg/ day now) and hopefully stop taking some of the other medication. Half of my co-workers in my department are sick and I’m worried about catching what they have and possibly going through another round of hospital visits.

He handed me my most recent labs and as I looked at it in disappointment (my kidney function was a little bit worse and the protein in my urine was a little higher) he told me that everything looked good and was “stable.” I tried to reassure myself that my labs would get better again and that maybe the change wasn’t as significant as I thought it was. He also said I could stop taking Sodium Chloride unless my Sodium level went down again. This, he said would help reduce my edema and I could add salt to my diet instead. I liked that idea much better than taking pills. At the end of the appointment he told me that he would see me again in three months. “So I still have to take CellCept?” I asked. He explained the process and that I would probably be on it for another two years. He then said that if I wanted to, I could reduce it a little. Instead of 3000 mg/ day, I could take 2000 mg/ day. I happily accepted this especially since it’s an Immunosuppressant drug and I work in a clinic surrounded by sick people.

In the past 2 1/2 weeks I have been picking up a co-worker to bring her to work because her car is in the shop again. It’s difficult for me to wake up earlier to pick her up on the work days that I usually sleep in a little longer. The days that I start earlier than her, she will have her husband or someone else drop her off at work and then she’ll ask me to wait for her to get off (which is usually another 45 minutes). She’ll usually wait until the end of my work day to tell me, after I’m already tired and looking forward to going home. Hardly anyone knows about this but the few that do are getting upset at me because it’s been so long that I’ve been giving her a ride and they’re upset that I cannot tell her that I’m not going to do it anymore or ask her for gas money. I let her borrow my car while I was on my Leave of Absence from work for a little over a week, maybe two weeks and she didn’t fill up my car with gas, not even fill up what she used. I’ve had to fill up my gas tank twice already.

I am exhausted yet happy that I didn’t sleep my weekend away like I usually do. After another hectic work week, I was able to attend my nephew’s football game and ran some errands with my mom, and then today I was able to go to the movies. We went to see “Maleficent” in 3D and enjoyed it along with my favorite “movie popcorn.” After the movies, my mom said she needed to go to help her Aunty pack for a vacation so I sat outside on a bench, trying to stretch out my back that has been killing me. It feels like I need someone to crack it for me but no one will do it except for one person at work. But I don’t want to bother her about it every day. Today I didn’t feel well because of at least three different things and told my mom that I was tired. She said, “Well maybe you shouldn’t have started to take less CellCept then.” I got really irritated because what did that have to do with anything? I asked her, “Do you even know what CellCept does?” She asked, “What?” I didn’t even want to answer that question, especially since she already “knew” or else she wouldn’t have made such a statement, right?  She then said, “It’s a Cancer medication?” I said, “No. I think you’re thinking about Cytoxan, which is a Chemotherapy drug.” I was over with the conversation as soon as it started. My own mother still didn’t understand anything about Lupus or my medication after all these years. She’s always jumping on my back about every single thing that I do or don’t do yet she doesn’t even know what I should or shouldn’t do. I will forever be “tired” or “exhausted” so why even mention it? Especially when this is the type of responses I get, including, “You’re always tired.” If anything, CellCept has caused people to experience more fatigue.

I’m excited about this coming work week. We have Wednesday off (King Kamehameha Day) and Friday is payday along with the upcoming weekend.  🙂

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I just got off the phone with a good friend who I could tell had been drinking. In general, I despise speaking to drunk people. My father was an alcoholic and a “drunk caller.” It was really difficult to deal with him throughout the years with all of his bitterness, anger (mostly at my mom for divorcing him because of his drinking), and him repeating himself over and over again. When I was still in high school, there came a time where his anger turned towards me and I couldn’t handle it anymore. I finally had enough and hung up on him. It was something that I had wanted to do on many occasions but just couldn’t for some reason. After this episode, I wrote a short story called “The Man We Loved.” But I did still love him, I just couldn’t deal with it anymore. I gave him another chance which he again ended up ruining and I didn’t talk to him for about ten years. I had never seen an alcoholic as bad as he was until I met S. Again, I love S but at times I cannot talk to her. I finally told her a month ago that I can only talk to her when she’s sober.

She just called me and I silently listened to her tell me the same story over and over again. I tried not to get angry or to be abrupt about it. I wondered if she would give me a chance to talk as most of the time she doesn’t when she has been drinking and everything that comes out of her mouth is so angry. It sucks the life right out of me. After 30 minutes or so, she asked me how my doctor appointment went. “Well,” I said, “He took me off of the Sodium pills and told me to add salt to my food instead…” That’s when she interrupted me. Telling me that I cannot have French fries (who was talking about French fries?), I should be eating stuff like Kale, am I f—k’n kidding her that my doctor told me to eat salt, that he doesn’t know what he’s talking about… She started to talk about a diet that she wants to impose on her mom, that I should grow my own food and have a garden, etc. I tried to stay silent again, listening to her tell me what I should and shouldn’t be eating as I started to get more and more upset. She said that my doctor is an idiot. She asked me what have my doctors told me to do about my diet. I was silent for a while because sometimes when she asks questions, she will jump in as soon as I begin to talk and then it’s her turn for about 20 minutes again saying the same things over and over again. She asked me again so I told her in an upset tone that they have told me to limit my liquids to 64 oz. a day and that I can add salt to my diet unless I’m feeling “low-sodium” again. She asked if I was upset at her, and not to be upset with her. I told her I would stop if she would stop telling me what I should be doing. She agreed and then started going off about my doctor and the salt again! I told her I had to take a shower and we both said bye. Maybe I should really go and take a shower. Sorry for venting. I’m over talking to family and friends about anything that has to do with my Lupus or doctors appointments. It’s not worth it.

I want one of these!

I want one of these!

“How Do You Feel Today?”

Almost everyday I am asked the same tiring question, “How do you feel today?” My mind starts spinning and every pain, the exhaustion that healthy people cannot relate to, the fear, and every sensation, comes to the forefront of my mind. I begin to feel everything at once and at times it is overwhelming. It’s a list of symptoms I do not want to spew out. Some of which I was able to temporarily “forget” as I immerse myself in my daily tasks (especially at work). The answer I am sure is more than the questioner bargained for. My answer? A simple: “Better,” “Good,” or “Fine.” Depending on who it is, sometimes I will just name off the most pronounced symptom of the day but leave the rest unsaid. I’ve had a couple of friends tell me that I can tell them everything, they do not mind. Although I am extremely grateful for their offer that touches me deeply, I do not want to impose on them and perhaps give them more than they expected.

Several weeks ago I met a woman who has Lupus and Kidney Nephritis. She is currently undergoing dialysis and I believe is on a list to get a new kidney. We only had about 15 minutes together as my family was on our way to meet for an early Mother’s Day dinner. It was awesome to finally meet her as we had been emailing each other for a couple of weeks. Although we made plans to meet before, those plans got cancelled due to “Lupus.” Most of the time she was the one who cancelled and apologized profusely for it. “Don’t worry about it. I understand.” I tried to make her feel better. I am usually the one that cancels plans due to Lupus so it was a change to be on the other side. It was nice to be able to understand and tell her that it was okay, we could always meet on another day.

C was feeling good that day and said she gathered a bunch of art supplies that she wasn’t using and was very excited to give to me. She hoped that I would love it and asked if she could drop it off. I was at my sister’s house that day. My sister was the one that wanted me to talk to C. She hoped that it would somehow benefit me to meet someone else that had the same health issues that I did. My sister asked C, “How are you feeling?” C began to tell her how tired she was, that she was going through dialysis several times a week, taking care of her children, and named off a few more symptoms she was going through. My sister listened intently, asking more questions to gain a better understanding of C’s answers.

My mind took me back thirteen years ago when I was experiencing my first major flare. My sister seemed to believe that everything was in my head. She would ask me how I felt but when I told her, she would scold me. She met a “doctor” who told her that it was my fault that I had Lupus. She told me I should get a second opinion. I told her I already did (she really wasn’t involved in my appointments or procedures/ tests). I can’t recall anymore everything that she said to me but I stopped talking to her about my health. It saddened me that my own family doubted me (and she wasn’t the only one). As she was listening to C, I wondered if she finally “got it.” That it wasn’t all in my mind but that there were other people that felt like I did. Another thing that I liked about talking to C was that when she told me what she was feeling, I understood what she was talking about. She didn’t have to explain herself. I wondered if my symptoms were “validated” in my sister’s mind now that someone else she knew told her the same things that I did.

Although I do not like to talk about how I feel to people that won’t understand, I felt like I could talk to C if I wanted to. Which brings me to the main point for this post. (Ah, finally!) 🙂 I have a question for all of you fellow Lupies and others that have an autoimmune disease, or any other chronic disease: “How do you feel today?” If you choose to answer, you can list off as many symptoms and feelings that you want. I promise, I can handle it. 🙂 And it doesn’t have to be limited to just how you feel today, you can respond with everything that you go through due to your “disease.”

My “Lazy” Day

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

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

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

Pink Hibiscus I spotted at my Aunty's house.

Pink Hibiscus I spotted at my Aunty’s house.

Atrial Fibrillation and Warfarin (Plus Kidney Update)

An Atrial Fibrillation is basically an irregular heartbeat which can cause poor blood flow to the body. AF is associated with heart palpitations, shortness of breath, weakness, fainting, chest pain, and/ or Congestive Heart Failure (CHF). The risk of stroke for people with AF increases five times and can even be a greater risk if high blood pressure is also present. The risk of stroke goes up each year. There are different treatments depending on the Individual’s risk for blood clotting and stroke. Some people are advised to take baby Aspirin, others may be prescribed Anticoagulants like Warfarin, the use of pace makers may be necessary, etc. Warfarin is a medication that helps reduce the risk of blood clotting and stroke. The danger in using an Anticoagulant is that it may increase the risk of major (sometimes fatal) bleeding or can cause a blood clot if not monitored carefully. This is very general information and does not include all the risks and side effects of being diagnosed with AF, the use of Warfarin, or other Anticoagulant medications. If you have any questions or concerns, you should speak to a medical professional.

This is based on my experience with AF and Warfarin. A couple of months ago, I started to feel like something was wrong with my heart beat but I wasn’t sure how to explain it. I couldn’t even tell the doctor if my heart was beating faster or slower. It was just weird. Different. On one of my hospital visits, I told the Hospitalist about this and he said they would monitor my heart during my stay but no one ever mentioned it again so I just let it go. I’m not sure if they were really monitoring it or not, but the tests that they performed previously came out fine. I figured it was just another strange Lupus occurrence that remains undetected (which makes me look like a Hypochondriac). My PCP (Primary Care Physician) later gave me a referral to see a Cardiologist.

By the time I saw my new Cardiologist, I had already completed a recent EKG and Echocardiogram during one of my hospital visits. The tests came back fine. He wanted me to wear a holter monitor for two weeks to record any “events” that might occur. For the most part, if I felt anything strange with my heart rate, I was supposed to manually record it on the device. There was also a drop down menu for me to record what I was doing at the time of the “occurrence.” It was a real pain to wear that thing for 24 hours a day for 2 weeks (actually, I could take it off while I showered), but still. If I remember correctly, the only thing that the monitor would pick up on its own was heart arrhythmias. I was so happy the day that I could finally take that thing off. I figured I would receive a phone call from my Cardiologist’s office to tell me that nothing was detected. Instead I received a call advising me to start taking baby Aspirin and to schedule an appointment as soon as possible.

I went in the following week. My Cardiologist made it very convenient for me by agreeing to see me on the same day that I was going to be at the clinic for an appointment with my Neurologist (even though he didn’t normally see patients on that day of the week). He told me that the holter monitor had picked up an Atrial Fibrillation and that he wanted me to talk to my PCP about prescribing me Warfarin and giving me a referral to “Health Management” (the department that I work in) to monitor my INR levels. He kept saying that I was too young to have this problem and that this was more common for elderly people. I kept thinking that anything was a possibility for me despite my age because of Lupus.

I continued to take baby Aspirin until I saw my PCP. My PCP asked me if I really wanted to be on Coumadin. I didn’t however with Congestive Heart Failure, high blood pressure due to my poor kidney function, as well as my other health issues, I did not want to have to worry about having a stroke too. Especially because I was told that the risk could increase by 3% each year (or something like that). He gave me a prescription for Warfarin and told me to make an appointment in one week at Health Management to monitor my INR levels. When on Warfarin, it is extremely important to follow up and to take the correct dosage of medication. The INR levels will show if your blood is too thin (risk of bleeding), too thick (risk of clotting), or just right. I had three visits so far, weekly appointments. The length between appointments that I have seen so far are anywhere from 3 days, 1 week, 2 weeks, 1 month, and 3 months. The last time I had an appointment (last Wednesday), my INR level was higher (which was a good thing), but my blood was too thin. Usually when they prick my finger, the nurse will have to gently squeeze it so that a little bit of blood will come out. This time, the blood was flowing and was going to drip so I turned my finger so that it wouldn’t fall anywhere. I then had to go to the lab to make sure that the INR level that the machine reported was accurate because it didn’t make sense for my blood to be that thin when my levels were higher than the last two visits. Again, my dosage of Warfarin was increased but just for the day.

INR Testing. I found this photo under a web search under "images." The caption said it came from gastroruas.com

INR Testing. I found this photo under a web search under “images.” It said the image came from gastroruas.com

All I know is that I need to be careful not to get cut or scraped (anything which would puncture my skin and cause bleeding), and if I hit my head I need to go to the ER in case I have internal bleeding. I just realized yesterday when I was thinking about making a dentist appointment that I can’t forget that I’m taking Warfarin. Depending upon what I may have to see the dentist for, I might have to either modify or stop taking the medication before the appointment. I know that when people on Warfarin have upcoming surgeries, they have to stop taking the medication. I’m not always the most graceful person. If possible I love to hike (where I may get scraped by a tree branch, slip on mud, trip over an exposed tree trunk), all of which has happened in the past. I also like to boogie board and paddle board (I would need to be careful not to get scraped by coral especially if I “wipe out” and am pushed into a big rock or coral while underwater by the strength of the wave). I’m just hoping that they’ll find that the AF was just a strange occurrence that happened during a Lupus flare and that I can get off this medication. There are just too many things for me to worry about. Since I’ve been taking Prednisone, I started getting a lot of scrapes on my hands. I could just softly hit something (like a table) by accident and end up bleeding. The last time this happened, my hand hit the end of the table so softly that if not for the blood, I wouldn’t have even realized that my hand even touched the table. The good thing is that’s not happening as often as it was before when I was on a higher dose of Prednisone. Earlier last week (before my appointment to check my INR levels), I was scratching my arm when all of a sudden it started bleeding a lot.

And here’s a random update regarding my kidneys… I received a short letter with lab results from my Nephrologist. He said that my “urine albumin leakage” (as he calls it) is much better and I could reduce my Prednisone to 15 mg. (I haven’t seen him yet to let him know that I have already started doing that per my Rheumatologist). He always has a graph to give to me which I like a lot because it also shows previous results. Right now the results are fabulous! I am so close to the point where I can probably stop taking most of my medication. I’m not sure what the unit of measurement is but on 12/14/13, my urine albumin leakage started off around 4300. Since then it has been going down gradually but between March through the end of April it significantly dropped to around 600.

Yep

This whole work week was crazy busy. With two providers out all of a sudden, needing to call to cancel & reschedule patients, on top of doing daily work, checking people in and out, taking phone calls, and just having to do damage control as the majority of people we needed to reschedule were angry. Some people still showed up for their appointments because either they did not listen to their voicemail or didn’t get a voicemail for some reason (voicemail not set up, no voicemail, or an invalid phone number). I’m also in charge of our Corporate Accounts which is a big deal for us and that was one of the most difficult situations to deal with because we want to keep their business but at least two wanted to speak to upper management. I was glad that they asked to speak to my manager because we were able to come up with a back up plan which the two representatives seemed to find acceptable. However it does not take away from the fact that we failed to meet their expectations. It’s better for someone to voice their displeasure so that we can find a solution than for them to remain silent and not renew their contract.

The Provider most of these people needed to see had to serve on jury duty for an estimated 1 1/2 weeks and unfortunately she cannot be cloned. So if she’s out, then unfortunately, there is no one to take her place. Jury duty is not an option however everyone was so angry and who did they take it out on and who had to deal with it? Me. A few days this week I had to work alone, management thought it shouldn’t be a problem as our department had 0-3 providers in the office depending on the day. Sure, if all I needed to do was check people in and out, I can handle being alone. But when I’m doing that for our department and other departments on our floor, plus taking phone calls (which we had many due to the cancellations of appointments), answering multiple emails, trying to reschedule all of the cancelled appointments, and all the other paperwork & things I need to do, I was stressed!

Where's My Pony?

By Friday (yesterday), I was dragging. I just wanted to lay down on the cold, dirty floor and fall asleep. The majority of the time, I have difficulty falling asleep but yesterday it wouldn’t have been a problem. We also had a meeting that I wasn’t aware of and when they passed out the agenda, I saw my name on it where I needed to speak about one of our Corporate Accounts. I wasn’t sure what they specifically wanted me to talk about nor the extent of the information they wanted me to divulge. I hesitated at first and then apologized for not having anything prepared. Before I could say anything else, my direct manager started to talk about the issues we were going through in the past week. After she was done, I added more now that I knew exactly what they wanted me to talk about. But it didn’t make sense why one account was mentioned but not all the others. It doesn’t even matter anymore. Our top boss (I don’t know her title) was at the meeting as well. I felt really dumb and hope that she doesn’t think that I don’t know anything about the Corporate Accounts (this is my favorite part of my job and I want to keep doing it, especially if it expands and another position needs to be opened). I also became really paranoid and then stressed out about losing my job. I don’t even know why my mind went there. I’m so glad that it is Saturday and I can take a break from the chaos.

I had at least 2-3 people make comments on my appearance. One guy told me I had put on weight but I looked better because I was too thin before. Then I had someone really irritate me (I was probably more irritated because I was trying to get as much done as quickly as possible and because of the type of week that I had). I’ll call her Nancy. Nancy will come in 1-2 hours before her doctor is even in the clinic to try to “catch him” before he gets into his office. In the meantime she likes to sit and talk to me because she thinks I’m not doing anything “important” because I’m not helping a physical human being. But I really don’t have time to listen to her talk about the same thing for one hour or more. And the story that she tells me never changed from the last five times or more that she’s told me her feelings on this particular subject. It’s something that can be said in five minutes but she goes around, and around, and around (like I am- ha ha) and either restating it in other words or just using the same words. She doesn’t care. At first I did talk to her but after a while there is just no time for that. Not even time for the guy that likes to tell us stupid jokes (the same jokes) that he made up and he’ll hang around forever unless someone needs our help. I fake laugh but it’s so much effort to do that. And he’ll laugh as well for a long time as he stares at me (or us if there is someone next to me). It’s very uncomfortable. Anyway, back to Nancy. She came over to our counter and told me that when I had passed her, she didn’t recognize me because I had cut my hair and “boy did you beef up!” She just kept going on and on about it. “Wow! Your face really went… (she cupped both of her hands on her cheeks and made a “pfffffff” sound, filling her cheeks with air so that it would appear larger, and moving her hands in opposite directions to indicate that I just got really huge). She couldn’t stop laughing about it. I guess it amused her. I kept typing out the email that I needed to send off as soon as possible and all I would say after every two comments or so was, “Mmhuh” (without opening my mouth) and, “Yep” (more like, “YePuh”)- with an emphasis on the P. She eventually went away, still laughing.

Nancy reminded me that people judge outward appearances (especially weight gain or the infamous “Prednisone Moon Face”) without knowing anything. People usually keep their comments to themselves, which is the polite thing to do. She’s assuming that I just started eating everything in sight. Being laughed at because I “beefed up” after everything that I’ve been through and still not being “in the clear,” really pissed me off. It also didn’t help that my co-worker told me the other day that when I gave her a ride home after work, her husband told her that he didn’t recognize me at first and thought I was a guy. Yep. I’m a man now. And not a “beefcake.” Just a chunky monkey. I recalled a memory of the first time I was having a huge Lupus flare and was put on a high dosage of Prednisone for a long time. Back then I had gained even more weight. I had a celebration (I don’t want to get into the details) that was supposed to be a special day for me. Two of our guests came up to me (I didn’t know them well- they were my friend’s aunties). “Wow, you really got fat, yeah?” They knew that I had Lupus so I told them that I had been really sick and was getting better but was still on Prednisone. “I know,” I said sadly, “It’s because of the medicine that I have to take.” They both started to laugh hysterically, “Yeah, right!” I walked away as they were still laughing and grabbed the first friend that I could find. I found Lei. I asked her if she would come with me to the parking lot, away from everyone so I could smoke a cigarette. I held back the tears until we weren’t surrounded by anyone else. I don’t know why I was so sensitive about it that night.

Visit With My Rheumatologist and Update

Last Thursday, I went to see my Rheumy and my “numbers” from my lab work are getting better. I still have my “normal” stuff happening daily but I can handle that more than what I just went through. I just can’t handle everything being amplified plus more pain, exhaustion, brain fog, difficulty breathing, and “fighting” Pneumonia for about a month all at the same time. He said I could lower my Prednisone dosage again. So the plan is to go down to 15 mg for 2 weeks and then down to 10 mg until I see him again five weeks after that. I’m very happy about getting weaned off of Prednisone. I can’t wait for all of this to be a distant memory. I don’t want to get too excited yet since I know how all of this could change in an instant. Yet I fervently hope that soon this episode of my life will be over. I don’t want to be on “survival mode” anymore, I want to start being in “living mode.” The last thing my Rheumatologist said to me before I left was, “Our next goal will be to get you looking more like this,” he pointed to my employee badge that I forgot to take off during my lunch break/ appointment. I absolutely agreed with him.

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I started that post almost a week ago. Since my last post and return to work, all I could manage was to get through my work day. There was no energy for anything else. Lately I also have been trying to “remember to breathe” when I get in a negative situation that I don’t want to be a part of. I’m one of those “high stress” people. I hate the way anxiety feels so much that I will go out of my way to avoid any type of conflict or confrontation. It’s very uncomfortable and I will remain angry and stressed out all day and even after work. Nowadays I try to just shake it off. Today was a horrid work day (worse than yesterday) and I couldn’t shake off anything until after work. Luckily I was finally able to just let it go, even though it took a while. I understand that once something is in the past, it’s in the past. There’s nothing I can do at this point in time to change the outcome of any past event. And all I have control over are my feelings. I need to re-remind myself about this frequently.

In the past few days I have been feeling a lot better than usual but still have my bad days. The pain from the nerve damage in my feet started to come back yesterday. I joined a gym because they had a corporate discount for us and only went twice so far (Monday and yesterday). I’m starting off slow but was happy when I realized that I could actually complete my goals for the cardio workouts (stationary bike and treadmill). For a long time I had more difficulty breathing, could barely walk from one room to another without feeling dizzy or needing to catch my breath.  When I did try to walk “further” on my “better” days, I was out of breath within 30 feet or less and had to walk slower or stop to sit down.

I am embarrassed to say that I am extremely self-conscious about my weight gain (especially because it includes a lot of retained water and a “moon face.” I was hoping that by the time I returned to work, I would look more like myself. When I look in the mirror, I feel like I am looking at someone else. And that I am “trapped” somewhere in this body. I have weight issues as well that started when I was in my teens. Right now I would rather “hide in my cave” than have to join the outside world again. I wasn’t exactly ready to return to work but when I found out that I had exceeded my FMLA hours for the year, I had to go back because I need my job. I was given an incorrect FMLA total because when I calculated my return to work date, I left two weeks of FMLA just in case I got sick any time before November (when I need to renew my FMLA) and also wanted to make sure that my job was secured despite my absences that started in December. My depression (which comes and goes) is getting better now that I’ve returned to work. Even though my job can stress me out sometimes because there is never enough time to finish everything that I need to do (and I am very efficient), I love the people that I directly work with. I usually like to only hang out with me, myself, and I (for various reasons) but I guess there is a part of me that needs to be social sometimes. All the employees in our department have a good sense of humor and can take my jokes and don’t get offended by off the wall comments that I make. 🙂

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

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

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

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

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

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

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

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

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

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