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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rambling… Just Because I Can

I’m bored. Actually I’m tired and can’t seem to do anything but sit here thinking about how bored I am. I went outside for a little while and of course it starts to drizzle (only to stop when I go back inside the house to seek shelter). Creatures… creepy, crawly, slimy creatures abound here. When I first moved home certain facts that I should have been prepared for were almost like new discoveries for me since I had been gone for so long. I remembered the sunny days filled with laughter spent at the beach; gorgeous rainbows that painted the sky that was gloomy just a few moments before; and long hikes to the top of the mountain or to a waterfall. I forgot about the mosquitos and “mosquito punks;” demon toads that wanted to touch my feet or jump and grab onto my ankles; flying roaches (which thank goodness I haven’t seen yet); geckos; snails; centipedes; spider webs; and of course spiders (especially Cane Spiders).

The other day I saw a disturbing site and had to take a photo of it. I won’t tell you what I called it but here you go (you’re welcome). 😉

Lizards the size of dinosaurs... ok, so I exaggerate

Lizards the size of dinosaurs… ok, so I exaggerate

Mutant Lizards

Mutant Lizards

I made the lizard angry.

I made the lizard angry.

 

I’ve noticed many “mutant” lizards recently so it must be “Lizard Season” or at least maybe mating season. I saw that same “Alpha Male” lizard yesterday when I went outside, I recognized him by that unique and ugly tail of his that looks like it’s growing back after having lost it. So the only proper thing to do was to name him. I told my mom that I named him Igor (pronounced “eye-gore”). My mom kept correcting me that the pronunciation was “e-gore” (long e). I told her I was the one that named the lizard and it’s “eye-gore.”‘ She knows better than to play argue with me because she knows most of the things that I say are nonsense anyway and don’t matter.

Today while I was outside in the drizzling pre-rain, I saw a giant snail. Well it looked like a medium sized snail. Again, I had to photograph it.

Mr Snail

Mr Snail

I'm sexy and I know it.

I’m sexy and I know it.

 

 

 

 

 

 

 

 

 

 

Garden creatures abound everywhere. They surround me. They force me to use my flash light when I leave the house at night to eliminate the possibility of us having any physical contact whatsoever. I find a safe place to sit outside and look up into the night sky filled with stars and planets. It’s quite peaceful until it’s time to go back into the house and I have to turn my flashlight settings back on my phone so I can return “safely” indoors.

When I first moved back home it wasn’t long before I was covered by mosquito bites. I could go outside for a minute or two and come back covered with 5-7 bites. I said it was because I was like “fresh blood” since I was on the mainland for so long. I recently noticed that I haven’t been getting bites for a while so either: 1) It’s not “Mosquito Season” yet; or 2) They don’t like my meds.

And because I am kind and do not want to leave images of slithering, brown, garden grossness, I’ll post one last photograph. 🙂

Plumeria

Plumeria