What the…???!!!

It seems like it was about two weeks ago that my Rheumatologist was trying to get in touch with me and we were playing phone tag for days. It was about lab results so I was curious as to what was so urgent that he was calling me about labs now? But it was nice to think that any doctor would take the time to go over his patients labs with them after the initial visit. It ended up that he was reading my labs results that my Nephrologist ordered. He will always send a report to my PCP and Rheumatologist. So my Rheumatologist received those reports I had just gone over the previous week with my Nephrologist. The labs showed that the protein being filtered through my kidneys had greatly reduced and my kidney function went down a little. This is after restarting Plaquenil 200 mg/ twice a day, another 1,500 mg (full dosage 3,000 mg) of CellCept and Prednisone 60 mg and taper down 10 mg every two weeks until I get to 10 mg and I would see him again on February 4th I believe. He initially said he had just placed labs and to do them today. It was to measure protein and kidney function again but when he realized these labs were just done a week ago he told me to totally disregard the labs. Not even do it before our next visit, he hasn’t ordered anything more than the labs he ran on me the day I first saw him in November. The reason I mention these things is because he wanted to base his decision about changing my treatment plan due to labs looking a little better overall that was done a month apart and I don’t see him again until February. So at the time there were still about 1-2 times that I could do it and I bet it would go up and down just like my Nephrologist said. Since we were looking at reports from my Nephrologist- let’s call him Bob, I asked my Rheumatologist if he received Bob’s message about who was going to set up the Infusion because if no one was doing it he would set it up for me. My Rheumatologist sounded confused and asked, “But your labs are better. Why would you still want to go through the chemotherapy.” He proceeded to tell me that we could continue with the CellCept (you know- the one that “failed”), and throw another medication in the loop. Oh the perks! I said I was still considering it because when I went over these labs with Bob, he said that he would still go with the chemotherapy because my labs go up and down all the time from month to month. I asked him in a couple different ways if I should continue on this course since we seen an improvement and monitor the progress or results and make changes as needed or if he would still strongly suggest the Cytoxan. Bob asked me on that visit why the long wait? And asked me what my issues with Cytoxan was. I said there were a number of things but what I realized is that if I have the possibility for my kidneys and maybe even my Lupus to go into remission then I have to take it. It’s been a long time and I know it can be even longer. Even if my kidneys only go into remission for a couple of years or less, that’s still better than the protein destroying my kidneys on an almost daily basis. I didn’t want to waste any more time. I just wanted to do it already. I felt like I had the luxury to process a lot of what chemotherapy entails to me. I am not one to deal with anything negative. I would rather suppress it. But I knew I needed to process this one the right way or I might end up feeling like I’m going to have a breakdown later when I’m going through it. So my Rheumatologist said he would write a message to Bob and tell him the course of treatment he thinks I should do. So until I actually see him again on 2/4, I will not know what I’m doing. And if it is Bob that needs to talk to me about that then I have to wait until around 2/16. It makes the baby issue more unsettling to me. I mean sure I don’t want to go through Chemotherapy. Nobody does. But when I have three doctors telling me that they agree, the benefits outweigh the risks including getting cancer (which runs in my family). So it upset me that we had this in depth conversation about it and he kept acting as if it was so dire and I had to do this or it would be a shame to be on dialysis at 50 years old. And then the use of Prednisone among other things in one month makes him think they will continue to get better? I had no protein in my urine for the first time I knew of since 2001 just a few months ago and my kidney function was down but that’s still a good deal. Then the next time I saw him within maybe 3-4 months, my protein was high again and still bad kidney function. If there is a way that doctors can stop saying the worst things and are so quick to prescribe chemotherapy and then when there’s a slight improvement there’s all of a sudden another option that was clearly not an option before. I was crying everyday even if I shed a few tears as a thought crossed my mind or I remembered something for over a month. And what? Was it just not as serious as he made it sound? You can’t just throw these kinds of things at people as their only option unless they are sure! It’s not fun and games. I was referred to an Oncologist  when I lived in Las Vegas,  my doctor said it was because, “I think you might have cancer.” And with family history of all types of cancer run in my mom’s side of the family our generation has been lucky so far- knock on wood.

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I did so bad on the Prednisone this time. I started at 60mg and my PCP brought me down an extra 10 mg early because I was having problems breathing, I never really got to lose all the weight or hardly any of it since I got off Prednisone over a year ago. I don’t have any more room to “grow.” My face: cheeks, chin, eyes, look swollen. Next Wednesday I can go down to 20 mg. I’m still on 30 mg now. I was soooo grouchy, emotional, I started to have the crazy vivid dreams again. I wonder if it’s the CellCept? I felt like I was having possible issues with that med too. They make me feel horrible and there are so many of them.

I am falling asleep over here. I will proofread later; I know that’s a little backwards but I haven’t written in a while. Take care everyone and have a Happy (upcoming) New Year. 🙂

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.

It’s Been Forever… and a Day

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12 October 2016

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

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

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

 

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

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

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

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

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

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

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

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

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

Skateboarding!

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

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