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.

Frustrated and Sick

13 March 2014, 4:04am Wednesday

I’ve been M.I.A because the same week that I returned to work after the last hospital visit, I caught a cold. I haven’t been cold/flu-type sick since 2008 and I am extremely careful because I remained sick for two months. So I returned last week Monday just to start feeling an onset of grossness on top of everything else on Wednesday night and then have been out ever since. A visit to my PCP who couldn’t give me anything for it and said to continue what I was doing: resting, Tylenol, Day/Nyquil, gargle with hot salt water, and I was drinking green tea for my sore throat. We both thought I’d be able to return to work the following Monday. The “cold” or whatever this is just won’t go away. It lingers, it’s a slow progression with symptoms that come and go. More migraines than usual; restless nights; chills then hot sweats; a sea of sweat at random times; a tight chest; fingers cramping and locking and toes/ feet that follow suit, striking suddenly without warning, the pain almost unbearable depending upon the duration and intensity of the cramp. My voice started coming and going on Sunday and though I am not coughing a lot, my throat feels like it’s all torn up. In the past couple of days I’ve only coughed up a little bit of phlegm. Also I had been dizzy, foggy-headed, and later started having really bad shakes. The most worrisome thing though was when I felt my nasal passage and throat closing up and once again I had difficulty breathing. This time worse than in December because it included my nose and my already tight chest, that felt as if someone was sitting on me. It happened a total of four different times intermittently until I finally was scared enough to ask my mom if she could take me to the ER as a PCP or Walk in/ Urgent Care Clinic will send you directly to the ER for that. Of course by the time we got there, I could breathe again, only my chest remained tight. In fact, my EKG, Lung X-ray, blood work, and vitals all showed up “normal” with no signs of bacteria or infection. Again, I was going to be sent home without anything. I hoped they would at least keep me for observation as most of the “severe” symptoms weren’t a constant occurrence.  I asked the ER doctor, “What do I do if I can’t breathe again and it’s worse than the last times?” He assured me that my oxygen wouldn’t  be completely cut off and I would end up being okay and also to continue what I was doing… which I had been doing for five whole days (at that time) from the beginning with symptoms progressing for the worse. For my peace of mind, I asked him for an inhaler and something to soothe my throat. It made me feel a little better especially since the first night that the breathing issues began, it reminded me of when I had severe childhood asthma and I did start to wheeze. He said he heard a little bit of crackling on the right side of my lung but then nothing else on either side. I was so frustrated, even more so because all of their tests showed that I was “normal,” as if I was making everything up! How could that be? I am still perplexed. This doesn’t feel like a regular “Lupus flare” that I am used to, it feels like a cold/ flu and I was worried because of all the immunosuppressant drugs I’m taking and all of my current health issues, I might end up with something much worse. It’s good that’s not the case but I still hoped that something could “fix me now.” You would think I should know better by this time!  He wrote me out with a return to work day of March 13th (today).

The next day, Tuesday, I went to the pharmacy to pick up more migraine medication. The eight pills that I received two weeks ago were gone despite me trying to be frugal with them. When I got there, I was told that my insurance wouldn’t cover it because I was “picking it up too early.” I asked when could I pick up the refill? The answer was unacceptable, with no leeway, and what seemed like exactly 31 days from the date I originally picked up the expensive medication.  I asked how much would it be to purchase out of pocket. It was going to be somewhere way over $200. I couldn’t do that with all the hospital and doctor’s bills that I’ve had lately. And for eight?!  The pharmacist told me which migraine Rx would be covered by my insurance now so I sent a message to my Neurologist explaining the situation along with the request but stating I wasn’t sure what he wanted me to do or what he wanted to prescribe me. I received a call from his office early this morning saying that there was a cancellation if I could come in within the hour to see him, so I did.

We talked about different options and he gave me a Rx for another migraine medication for now (again only 8 pills are allotted per insurance, however it’s much cheaper), but I am not sure if they work yet. (I’ve taken a couple of migraine prescriptions in the past that never helped and was so happy to have found that last one). He gave me a shot today. My first shot in the butt (that I recall)~ the “highlight” of the day I guess. Then on Friday I have an Occipital Block scheduled (a shot in the neck along with an anesthetic shot because they are kind). I don’t like the sound of this one but I guess it can’t be worse than Cortisone shots in the nerves of my feet. Tomorrow I “get to” have another Echo Cardiogram done and then an event monitor put on me with instructions that I need to wear for two weeks. Needless to say, my Neurologist wrote me out until Monday. In the meantime I’m trying to get better because I need to go back to work but not being able to sleep, worrying about things, and too many unexpected drastic health changes all in a three month period. It feels like it’s one set back after another, wondering what will be next, yet hopeful because of lab work showing the numbers are moving in the right direction… for now. (Although at times they fluctuate like crazy from day to day or week to week). I don’t mean to sound negative. I used to think of myself not as a “pessimist” but a “realist.” Which was really the same thing to me in my life experience. I see now see that constant negative thoughts drain the energy, the very life out of (the collective) “us,” it is exhausting though “you” don’t realize it, “you” do worry about things that never happen, and sometimes things do turn out the way that “you” want them to, even if it’s not “soon enough.” So I teeter totter between the two extremes, trying to find a balance that I cannot yet get a grasp upon. When I thought about 2014 last year, I thought, “2014 will be the best year ever!” And realized that I had no idea what lie directly ahead. On the other hand, it re-reminds me that Life is precious and easily taken for granted; that it’s the moments, fragments of Life that truly make up Life and not just a long term “happily ever after” feeling; that we all are mortal and have a limited time to decide and do the things that we really want to do instead of waiting for another time or opportunity that may never pose itself. Life is right now.

We don’t necessarily have control over the slew of ailments, pains, etc. that our Lupus decides to sling our way but we do have control over our decisions. We decide with our doctor’s what our options are as far as treatment and discuss them if we have an issue with it or ask questions; we decide if we will follow that agreed upon treatment, we decide to be more proactive when we have to be, and most importantly we choose our attitude. To live a Life full of life to the best of our capabilities or to merely “live” as if we are only a shell of a person without a soul left. It doesn’t mean that we’ll always be happy about the circumstances; that we won’t sometimes get frustrated and angry at people; that we won’t feel exhausted from merely going to doctor appointments, procedures, and tests multiple times a week, too many times a month; and it doesn’t mean that we will never feel sad, lonely, afraid, and maybe at one point a “little bit” bitter. Maybe it all comes back to balance and breathing. I’ve been trying to tell myself to meditate. I have such a difficult time doing that because I’ve been having high stress lately and generally my mind can’t just remain still, sometimes I have a problem just laying still. My mind is like a crazy subway station, full of crowds haphazardly rushing in all different directions, it just never stops, and is random, and goes off into tangents. If I lay down too much when sick or exhausted, because I have so much to do, I feel like I’m “wasting time” even though a part of me is telling me that my body is saying that I need to rest and not to overexert myself. Okay I am convinced, I do need to work on meditating and quieting my mind. Although I’m off for the rest of the week, I’m already exhausted with the appointments I had or will be having since Monday at the ER with the five hour duration including wait time on top of feeling “sick” or whatever this is since everything showed up as “normal.”

Has anyone else had experience with feeling sick or flu-like symptoms and all tests returning as normal? Just curious.  Or are there just no answers? “It’s probably just the Lupus.”?

Day by Day- Crazy Flare

Rainbow08 March 2014 Saturday

My medication has at least tripled if not quadrupled within the past month and a half. It’s strange how until just recently I can only now feel it affecting me in a negative way. You would think that you would feel such effects when you first started them. I’m sure, and hoping that it’s at least making me “better” but as far as how I feel lately, especially today, I just don’t know what to say. I probably have already said this and I’ll say it again and probably again, I wake up more exhausted than I am when I go to sleep at night. Not to mention I have problems sleeping and have to occasionally take sleeping pills. I don’t take them too often because I don’t want to get used to them and have to take more. Frankly, I just want to be off of all my medication already, I’m over it and I have a feeling all of this has just begun and I do have at least three more months, if not unforeseeably longer to get out of this crazy flare and chaotic war going on within me. I had never wanted to go back on Prednisone again after the first time when I was first diagnosed because of all the ways that it made me feel. I felt like I was merely living, breathing, just occupying space. It didn’t feel like a life, especially on the days that I could not get out of bed because I was so exhausted, in pain, or whatever. I remember frequent and long Leaves of Absences from work and “FMLA,” which I recently had to “apply” for again, after not having it or needing it for almost 10 years; living my “semi-normal” life which we call “Remission.” A blessed state without all of the worry, stress, anxiety, the good days as well as sometimes really bad days. At least that’s a part of it for me as this is the first time I’ve experienced remission and then a major flare that came suddenly and unexpectedly, seeming to want to make up for lost time. Something I thought would never happen. I guess I just hoped that my changed attitude (positive, for the first time in my life) had the “power” to change every aspect of my life, including my health, and make me “well enough” that I would never have to worry about such things again.

So today I had my scheduled monthly massage. I figure since my back hurts a lot and it helps me to relax, I deserve it. I work hard and for so long all I did was live paycheck to paycheck and struggle to just pay the bills, which I was successful at, but barely had money for anything else. Especially while supporting someone else who didn’t see a problem with taking my money, credit card, or debit card while I slept to buy herself things that I could barely afford for myself. I didn’t eat well for a long time, I’ve always had problems with eating because I’m very picky and am not necessarily fond of food. I also have my own complex. One thing that may just sound silly (to use a mild adjective), is that I am very self conscious right now about the way that I look. Some days are better than others as far as my face & body due to bloating since my kidneys aren’t functioning at full capacity and at times there is still fluid in my lungs, but not enough to actually do anything about except to take Lasix. The Lasix had to be cut down because the Hospitalist said that it was the cause of the sudden drop in my Sodium level, which landed me in the hospital a couple of weeks ago. But now that I take it less frequently, I can tell a big difference. Once again I am uncomfortable in my clothes (right when I could finally wear a third pair of shorts- one that for once I could actually button a week and a half ago). I was so excited! How sad. When you feel big and uncomfortable in scrubs, there’s a problem. I have to be careful which socks I’m wearing, especially when I wear shorts because of the edema and then the water retention is more noticeable when the rest of my ankle or leg that is exposed at the top of the sock is totally huge compared to where the sock has made a big indentation in my leg. Sometimes I look down on my thigh and can still see Mia’s (my dog’s) paw print indented on my thigh! When I wake up in the morning, you can see the lines from my sheets and pillow case all over my face, arms legs, back, any body part that I layed on that night. I was 130 lbs. which I’m pretty happy with for the most part and even though I have lost water weight since January 29th when I was at my highest in a long time, I’m slowly gaining weight every single day again. Today was a bad bloating day, especially in my face. It makes it look like I weigh even more than I do and it’s not that I’m eating so much, it’s just some weight and mostly water. I never imagined water could weigh so much. But I guess if the edema which used to only be in my feet and ankles can go all the way up to my lungs, heart, and pretty much fill up my whole body (I’m approximately 5’6″), then I guess that’s a lot of water. It’s so hard for me to stick with the fluid restriction of 64 oz. of liquid a day as I used to drink just five 32 oz. of water at work alone. Though I don’t want to, I’m going to post the pictures of myself. It’s one of the most difficult things I have ever done but I’m hoping that maybe somehow it will help me to just overcome this ridiculous phobia. There are more important things to concern myself with. Like getting better and resting more when my body tells me to instead of being so defiant and stubborn sometimes because there are so many things that I need to or should be doing.

I had my sister totally chop my hair off. I knew it wasn’t a good time because of my frequently bloated face however I was just ready for a change and I chop hair off. I had my sister do my hair and make up today because I just felt so bad about myself, nauseous (I even felt like this during my massage which I usually thoroughly enjoy), overly exhausted, impatient and short tempered, in pain, weak, I had to take my migraine pill today so had just a headache for a few hours, and felt overly medicated. I’ve been thinking about alternatives but want to research it and discuss this with several of my doctors before I do anything differently. You never know what may interact with current medication, or the condition of my body, etc. But I am determined to get off all of these medications. I went to see my PCP the other day because I was coming down with a cold or something. I knew he couldn’t do anything for me but just wanted to make sure it wasn’t something worse than I thought and I wanted to discuss a couple of things with him. I pretty much knew the answers but one of my friends had expressed concern. I’ve been really shaky lately but I told her that it’s all of the medication. I was like this, except worse back in the day when again I was on a lot of medicine. The other day I was changing banks and needed to fill out paperwork. I had to ask my mom if she could fill it out for me. That was hard and embarrassing for me, and I think it hurt my pride to ask for help because I could not write without each letter being a shaky mess. I’d like to say that I have no pride, I am not a “proud” person, but I think to a point, we all have pride. And to ask for help has always been difficult for me, never wanting to burden or inconvenience. Especially when you have to ask for help for something as simple as filling out an application. But I would do anything for anyone that I love. It’s different though, it’s easier for me to give than to accept. My doctor said that he could give me a pill to help me with that (I said no) and he joked that he didn’t want to make me feel like I was a pharmacy. I told him not to worry about that, I already have been feeling like that for quite a while now. So we both agreed to leave it as is, it’s just embarrassing especially when I’m at work and no one knows what’s going on with me and neither do I want them to know. And now with all the immunosuppressant drugs and possibly some of the other ones, my skin, especially on my hands are thinner so it’s easy for me to get scrapes that I don’t notice until I feel them stinging or bleeding. And they take a long time to heal whereas despite the Lupus, in the past (the days of Remission), I still could heal relatively quickly. But then again what do I expect with various immunosuppressant medication?

While gathering the three horrible photos (despite me just not liking them for the reason I stated earlier), and that they are horrible, I found some of last year (and one from 2010 where we went ATV riding and I had a blast), photos that brought a smile to my face as I was having fun and feeling a lot better than I do now, so I wanted to post those as well. These will be my motivational photos, that one day soon, I will be doing these things and more. Feeling alive and vibrant in paradise.

I’m hoping to get over this cold soon. I just returned to work on Monday after being in the hospital and staying home after that for a week. Then I was out again by Wednesday. I’m going to drag my butt to work on Monday no matter what like I usually do, or did before this recent set back. My PCP told me he could tell I go to work even when I’m sick because he will see me and I’m pale, limping, or don’t look well. I didn’t know it was that obvious. Better days lie ahead, right? Right. 🙂