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.

snapseed

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. 🙂

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.

Prednisone

Let me just say that I HATE Prednisone. I know that some do not like that word. Hate. “You don’t really ‘hate’ *such & such* a thing.” Yes I do. From the bottom of my heart. I like to try to be positive & perhaps tomorrow will be a better day since I finally fell asleep sometime after 5 am this morning & woke up at 3 pm with my mom scolding me again as if I’m a child. As she also did last night. We both seem to be getting on each other’s last nerve lately & the Prednisone doesn’t help. I’m normally moody & impatient anyway. Something I don’t like to admit and try to hide under silence or a smile while internalizing all of my feelings. However with feeling as crappy as I do, I sometimes lash out or have brief episodes of “Tourette’s.” It is embarrassing afterwards but I get in this “zone” where I don’t really know what’s going on or what’s coming out of my mouth until it’s over. I am not so proud that I won’t apologize if I was wrong or even if I don’t feel like I was wrong I will sometimes apologize if I hurt someone’s feelings. Especially if that person is my mom who is always there for me and who I have probably worn out by now with my health condition(s) over the past four months. But by that time it’s too late. Apologies can only go so far and doesn’t make everything better. So then comes the guilt and depression. Along with everything else I must worry about, it is all too much for me at times. Surprise! It’s easier for me to just “forget” and not think about it. At least it makes everything easier for the moment. I tell myself I won’t do it again and what do you know? It happens again.

I first was introduced to Prednisone back in 2001 when I was officially diagnosed with Lupus and Membranous Glomerulonephritis. I was seeing a handful of doctors and it felt like a full time job. I was doing that along with all kinds of tests & procedures, going to the university full time, and working full time, sometimes overtime to make up for the money that my “significant other” was gambling away faster than I was making it. I was uncomfortable aside from the constant pain that never settled in a single place in my body, horrendous headaches from hell that would not go away even with the two medications that my Neurologist prescribed (Frova worked some of the time, maybe 20% of the time) but my insurance didn’t cover it and I couldn’t afford to pay over $300 for a monthly prescription so my Neurologist would give me samples and continued to prescribe me Maxalt. I don’t even know why I kept refilling it as it didn’t help at all. It was apparent that he was not going to try to give me anything else to try and had “run out of ideas?” So I guess I was just taking what I could get in the hopes that it would someday magically work. The Prednisone made me so much more exhausted than I already was on a daily basis, I was getting so big that I couldn’t fit in my clothes anymore which made me depressed, my face became huge and round (I would say it was like a dinosaur’s head), my appearance really changed and bothered me a lot, I was very depressed, scared because I didn’t know what was going on with my health, just that I had two diseases “all of a sudden” which had no cure, and it didn’t help that I didn’t have a lot of emotional support by my family and friends. They didn’t understand any of it. They could see that my physical appearance had changed but other than that, I acted “normal,” I could still go to school and work at that time, I didn’t “look” sick, just altered by medication… But I was never one to complain about every single thing that I felt or was going through. Especially when I would share and they still didn’t understand and used it against me or accused me of making things up, or “conveniently” being “tired” to get out of going out for an all day event in the sun, or that I had a low pain tolerance if I needed pain medication and was in pain every day. Why talk about it anymore? Everyday was the same as the last, just with slight variations. So if someone asked how I was doing, I was “good.” I was “fine.” It was simpler and still is. Prednisone made me grouchy but maybe I was mostly just exhausted and physically and emotionally taxed. I was in a bad relationship and under a lot of stress in every aspect of my life. Needless to say I was very unhappy. At least this time I don’t have all of those stress factors in my life (just new ones). 🙂 The good thing is that I moved home a couple of years ago. It would’ve been so hard to go through all of this completely alone if I was still in Colorado. It made me sad that my good friends stopped calling, coming by to visit, and stopped asking me to go out. I understand that sometimes I had to cancel plans and tried to explain with an apology because I was taught to keep my word, if I said I would do something or made a plan or obligation, I should always keep it. I disappointed myself when I could not do this anymore. So I stopped making plans to avoid feeling bad. I told them to please continue to invite me because if I felt okay, I would definitely want to hang out. But it didn’t work out that way. I wasn’t fun to be around anymore or cancelled one too many times. So I shut myself off from everyone and just did my own thing, except I was in that relationship where I would get yelled at every single day for hours. The same old thing repeated in different ways over and over again like a broken record. Once I finally yelled to shut up! That was a few days after my gall bladder surgery. I then got hit with a pillow in the stomach. After my kidney biopsy when I was trying to open the bedroom door to escape another cornered “battle” where I just got yelled at over and over again, I was kicked right where I had my biopsy and fell to the floor. “Don’t be so dramatic!” he said. As soon as I could get up, I reached for the door and got out of there. “It was an accident,” he said about both incidences. Hmmm. Accident. Most of the time I kept my mouth shut because I have a “smart” mouth but confrontation and unnecessary arguments I do not like and do not have time for. Especially when I’m “sick.” Once I was finally off of the Prednisone, I started to lose weight. I was so happy when I could finally see my facial features again instead of one big dinosaur head, I slowly could fit in all of my old clothes and then they eventually became baggy, I started to feel my head clear up, and I felt so much better. I told myself, “Never again.” And I declined Prednisone up until January of this year.

Butterfly

I love flowers and butterflies. They are my symbols for peace & happiness. Kind of ironic, huh?


A few years after being diagnosed, I was officially in “remission.” At first I thought that meant that the disease was dormant/ inactive and would not affect me. I guess it wasn’t as bad as when my kidneys were acting up and the Lupus was active but I did still have the pain, the headaches had gone away, I was only on a few medications and no longer felt like a “pharmacy,” but was still tired all the time. But after going through everything that I did, I would opt for remission. It made me kind of sad when the people at the pharmacy started to call me by name and knew who I was. I ended up with two Morton Neuromas (nerve damage), one in each foot (just so that the other foot wouldn’t feel left out I guess). I’ll talk about that on a later date. Various joints would hurt at different times, the winter months or when the weather changed seemed like the worst as far as pain, I would get this pain in my shoulder that was so bad that sometimes I couldn’t even move my arm (I still don’t know what that is), and various other things that I cannot recall off the top of my head as they all became my “norm.”

I don’t know what happened but after we got home from my sister’s birthday get together on December 13th, I was laying on my bed playing games on my phone to pass the time as I was too tired to do anything else. All of a sudden it felt like my throat was closing up and I was having trouble breathing. So I sat up. I could breathe a little better but was still having problems. I knew that any time someone has trouble breathing, they should go to the ER but I could still breathe, why waste my time and money to go to the ER for nothing? But what if I should go in? What if I don’t go and I stop breathing in the middle of the night? I didn’t want to wake up my mom so I was debating whether or not drive myself to the ER. After an hour of debating, I was too tired to drive and decided to go to sleep. In the meantime I had text my mom just in case I drove myself and wasn’t home by the time she woke up, she would know where I was. She was mad at me the next day for not waking her up and since I was still having issues breathing, she brought me in to Urgent Care (which I knew they were going to send me to the ER per protocol). The ER doctor did some blood work, a chest x-ray, EKG, etc. An Echo Cardiogram (I think, I can never tell the difference between the EKG and Echo or if those are the same tests or what) was ordered but a technician wouldn’t be in until Monday (it was Saturday). The ER doctor came in after he received all of my results. He asked me at what point was I told that I had Congestive Heart Failure. I looked at him surprised because I did not know. He told me it was in my charts. I thought back to when I was first diagnosed and living in Las Vegas but could not think of any time that someone told me that I had CHF. So I found out that day that I had CHF, my kidney function had rapidly declined in a fairly short amount of time and was closer to dialysis than to anything else (which my kidneys had always been my biggest fear), there was fluid in my lungs, my blood pressure was sky high, and I had bad edema in my legs because my kidneys weren’t doing it’s job. I called it the “Bizarre Love Triangle,” knowing they were all connected somehow and somehow I needed to make something stop to halt the damage that all three things were doing to my body. He wanted to admit me to the hospital until at least Monday for the ECHO and go from there. Actually I didn’t know how bad my kidneys were doing until a week and a half later when I established care with a Nephrologist. I’m glad I didn’t know in the hospital because everything else made my world turn upside down and inside out. I had really hoped that since I was living a more positive life, was doing so well in many aspects of my life, and was taking all of my medication again like I was supposed to even though I was in “remission,” I didn’t know what I had done wrong or where it all went wrong.

Since then it’s been crazy. I had to get another spinal tap the last time I was in the hospital last month which I was so scared of because of my first awful experience when it took forever, hurt, I could feel nerves being pinched in my thighs, it was painful, uncomfortable, and afterwards spinal fluid was leaking for days and I had the most horrid headaches that I had never experienced before in my life and never want to experience again. This time it was better. Quick and not painful (as I don’t mind needles anyway). My medication is hard to keep track of and I still don’t know them all by name. I’ve been in the hospital three times in the last four months (twice because my sodium dropped so low), found out I still have edema but it’s manifesting itself on the inside of my body that’s why it seems like I’m not retaining water because you can’t see it in my ankles and legs anymore. I get bad headaches that last for days, all of my “normal” symptoms are way worse than usual that I can’t even work so I’m on leave right now but have to get better by May 1st and go back to work on the 2nd. I was hoping I’d be better by then but I don’t know. I had to wear a holter monitor for 2 weeks per my new Cardiologist to “record” any irregularities I noticed during that time. I got to do a CT scan of my brain again (how fun, being claustrophobic), but they had music, Valium, and an eye mask so I was good. And he let me keep them. I got bossed around by a nurse that was younger than me, almost was given another patient’s meds as a frantic nurse was looking in the wrong person’s chart and luckily I caught it because she mentioned that the hospitalist wanted to give me Motrin which I knew could not possibly be correct because of my kidneys, my arms looked like I was a drug addict that loved needles, and all kinds of fun stuff. Of course most of the tests show nothing. They’re always like that. I got used to the doctors giving me shrugs, saying, “I don’t know,” or “It’s just the Lupus.” I didn’t like that there were no answers as I had always thought doctors always had the answers. It was and is frustrating to say the least. One thing that made me angry was that I was having edema for a while. The first time was back in March of last year. And to my surprise, it stayed there for days so I was able to show my new Rheumatologist. He pressed on it which left a big indentation that ever so slowly regained it’s huge shape. I had done that a lot, played with it like silly putty. “See this,” he asked as he pressed down on my leg. Yep, I’m not blind, I already know it does that. (I was thinking this, I wouldn’t say it out loud). 🙂 “You’re retaining water.” Okay. And I guess that was that. So I thought it wasn’t a big deal since he just blew it off and was more concerned about me being a cigarette smoker than anything else. The edema would come and go every so often, always lasting between 1-3 days. Then it started to get really bad in December, and the headaches started (it was so bad that I would need to call in sick for work and I never call in sick). The edema got so bad that you couldn’t see any of the bones in my boney feet, I had no ankles (just cankles), it went all the way up my thighs. It was really bad but I thought it wasn’t a big deal. Until one day one of the nurses I worked with said that I looked pale lately and she had seen my legs (I showed her), and she said that my face was bloated too. So I went to my doctor who immediately ordered blood work and stuff that the Rheumatologist should have done. My blood work jumps around so much that I can be fine one day and the next day something else is wrong. I am now officially anemic and my red blood cells and hematocrit has been low lately. My doctor was thinking about doing a blood transfusion but my Nephrologist wanted to hold off on it. He prescribed me some Iron last Thursday when I saw him. “Finally, I thought. I’ve been asking for something, anything that could possibly give me the least amount of energy or tell me what to do to get energy. I’m not sure if the Zinc will work but it’s worth a try.

The most important thing that I do right now is the hardest thing for me to do. I’m under liquid restriction for what I believe is for the rest of my life. 64 oz. I’m used to drinking 3-4 times as much as that. I am still failing miserably daily but I am drinking less than I used to, however I know that’s not good enough. My Nephrologist told me that when I was in the hospital this last time, I had enough water in me to last me six days. So I have to try harder until I finally get it and know how to ration my liquid throughout the day. My blood pressure in the meantime is still high but better. A couple of times it hit the normal range which made me happy. 200/114 is not good at all. I never had problems with my bp before.

I had one of the biggest scares of my life in December when I landed myself in the hospital for several days, sleeping most of the time because of the headache that wouldn’t go away, and the Nephrologist wanted to put me on Prednisone and that was the only option, I had to do it. He assured me that a small pill wouldn’t make me “fat,” that it’s the person eating, not the pill. Well I beg to differ because I’m not eating any more than I usually do and even though at least 10 lbs. is water weight, I have still gained weight and my face is huge. It’s not a dinosaur head this time, it’s a “Muppet Head.” Yea, I cut my hair super short at the wrong time because my head became bigger, like a Muppet. 🙂 I don’t know why saying those things make me smile or makes me feel better. I think a part of me would rather say that to someone that I haven’t seen in a long time than for them to think it or even say that I gained weight or that my face looks swollen. As if I didn’t take notice. My Rheumatologist said I could start taking 20 mg a day instead of 30 mg of Prednisone but I still don’t see a difference. I asked my Nephrologist when did he think I could start taking less Prednisone and also start reducing the CellCept and some of the other meds. He said we would discuss that later, he wants me to do a few tests first and see me in a month. A month seems too far away. I want to be able to reduce my medication sooner. He had at one time discussed Cytoxan with me (in case the CellCept/ Prednisone/ and other meds didn’t work) but he hasn’t mentioned it again so I’m crossing my fingers.

I know there are others out there with Lupus who are taking Prednisone. What is experience with it? How do you feel about it?