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.

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!

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.

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.