Nunya

snapseedI have been disturbed for the past week regarding something that a co-worker said to me and also upset at myself for even engaging in the conversation and telling her my business to “prove her wrong.” Or more so to prove to her that I was doing everything in my power to make myself better.  I had said that one time in front of a few co-workers  and she said, “No you’re not.”  Who does that? This person is a co-worker. She knows minimal. She used to know more when I thought we were friends but that was years ago. Any time I have been out of work for a Medical Leave she and no one else texts, calls, or even act as if they care if I am still alive or not. It hurt at first years ago when I seriously thought I didn’t have much longer to live with all of my new health issues and hospitalizations. It was all new to me. Now I know it’s like the “new normal” yet with Lupus things never quite stay the same. I haven’t had a hospitalization for over a year now  (knock on wood). This is a big deal (to stay out of the ER and hospital). It’s been only about 3 months since I have been to the ER.

One day I was joking around (like I usually do) and I told (let’s call her Tuna) that I should work part time and focus on my business for my other “part time” job. (And  if you have your own business you know that it’s never a part-time or full-time job. It’s an all the time job). Tuna told me that would be a great idea.  I didn’t really expect a response since I always say silly or off-the-wall things that are impossibilities. She said that it would be better for me and my stress level. I was wondering what stress was she referring to?  I told her I couldn’t work part time  because if I ever got sick I would get fired because if I worked part time, I would never be eligible for FMLA.  I have made quite a few changes in my life. One being that I’m trying to be more compliant with all of my medication all of the time,  trying to eat healthier foods (although  it is difficult when I am such a picky eater and don’t like many things)- yet I’m trying,  I cut down my soda consumption to 0 to 2 cans a day,  I rarely drink juice anymore (The soda and the juice reduction is because of sugar). My co-workers keep hounding me about my sugar intake which are my daily drinks. I also drink a helluva lotta water,  I have been less stressed than usual and anything that might be bothering me I guess is mostly about being sick all the time.  Something that Tuna would not know anything about and I won’t be mean so I’ll stop there.

She then asked me  what happened to the disability thing? I wasn’t sure what she was talking about and  it took me a while to figure out that she was referring to the fact that they (my co-workers)  at one time wanted me to apply for disability and not work anymore. I think I mentioned parts of it in this blog before. I didn’t feel right about applying for disability because I feel like I am still capable of working. Sure I get sick easily when people want to come to work sick and cough on top of me and not warn me that they are sick or stay away from me knowing I’m on three medications that suppress my immune system.  In fact I’m sick right now.  Of course if I felt like I was still capable of working several years ago when it was very difficult for me then I certainly can work right now. I haven’t been in the hospital for over year. Sure my kidneys are not doing so well but it did better on the prednisone and the full dosage of CellCept.  And it is still better than it was. So we will see in February what these doctors have decided for me now.

So I told Tuna that I don’t think I would qualify for disability and that I feel like I can work and I don’t want to apply. She said that they were worried that I was going to get sick again because of the stress and I was still wondering what stress? But I didn’t want to ask, these conversations aren’t fun.  I thought, “Wow, why  don’t you start helping me one leg at a time into a coffin?”  Here I am suffering every day  in a different way but keep a smile on my face and I feel like I’m doing better and this person tells me that I need to stop working.  So I told her that I have everything covered and that I have the tools to help myself. And sarcastically she said, “What your medication?” That’s when I started to tell her too much because I felt like I had to defend myself. And that made me angrier because I told her things that I haven’t told anybody and she’s the last person I’d want to know these things that I have not even told my best friends yet. She had the gall to say that I still eat like crap. What the hell does she know about my life? From now on I’m putting all of my things in the refrigerator downstairs.  So I explained to her what I’ve been eating, which I put thought into and it is actually better than a lot of other things that even if they eat. She told me she didn’t realize that that’s what I’ve been eating. Really?!  I told her I’ve been seeing a therapist.  That is what I don’t want anyone to know.  And it’s none of anyone’s business. And I know that I cannot tell my coworkers anything about my life because they use it all against me. They told me that I got “sick” because I was stressed out because of this short term boyfriend and that stress was the reason I was hospitalized and my kidneys failed and everything. B.S. I also told her that I haven’t been stressing out like I used to. And that I realize that I’m only one person and can only do what I can do and I will never be able to finish everything in a day on certain days. And that is OK because I prioritize things. I ended up walking away,  having already said too much, feeling unwanted, feeling so judged and misunderstood…  never has she asked me, “how are you feeling?”  She doesn’t care but she has a lot to say on the subject now doesn’t she? I didn’t know that my health was so much a part of their business. I understand that they don’t want me to be out all the time but they have to understand that this is my life and I am making my own decisions. I’ve never judged her life or told her what she should and should not do.  I have never made assumptions about her life and then told her my thoughts and judgments on it.  I really cannot care less about her life or anyone else’s. I’m too busy living my own.  However I do care a lot when someone has the audacity to judge me on zero information or maybe old information.  And I’m not sure why they do it? And per the FMLA law, my job is protected as long as I stay within the  parameters of the law and my body doesn’t decide to go haywire too much.  It almost makes me wonder if FMLA protects me from people like this saying stupid stuff to me about not working anymore and applying for disability.  Not that I would say anything because I don’t want more problems.

I’m still not sure exactly why this is still bothering me about a week after it happened.  I did learn one thing, next time someone who doesn’t care starts telling me stuff like this, I will just walk away. I don’t care if it seems rude because they were rude in the first place to bring up my life and their ignorant and misinformed opinions on it.

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

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

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

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

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

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

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

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

A Hodgepodge of Life Lately

Last Thursday I went to my follow up appointment with my Nephrologist. I was excited and scared at the same time. I was hoping that my labs were still looking good and that I could continue to wean off of Prednisone (I’m down to 10 mg/ day now) and hopefully stop taking some of the other medication. Half of my co-workers in my department are sick and I’m worried about catching what they have and possibly going through another round of hospital visits.

He handed me my most recent labs and as I looked at it in disappointment (my kidney function was a little bit worse and the protein in my urine was a little higher) he told me that everything looked good and was “stable.” I tried to reassure myself that my labs would get better again and that maybe the change wasn’t as significant as I thought it was. He also said I could stop taking Sodium Chloride unless my Sodium level went down again. This, he said would help reduce my edema and I could add salt to my diet instead. I liked that idea much better than taking pills. At the end of the appointment he told me that he would see me again in three months. “So I still have to take CellCept?” I asked. He explained the process and that I would probably be on it for another two years. He then said that if I wanted to, I could reduce it a little. Instead of 3000 mg/ day, I could take 2000 mg/ day. I happily accepted this especially since it’s an Immunosuppressant drug and I work in a clinic surrounded by sick people.

In the past 2 1/2 weeks I have been picking up a co-worker to bring her to work because her car is in the shop again. It’s difficult for me to wake up earlier to pick her up on the work days that I usually sleep in a little longer. The days that I start earlier than her, she will have her husband or someone else drop her off at work and then she’ll ask me to wait for her to get off (which is usually another 45 minutes). She’ll usually wait until the end of my work day to tell me, after I’m already tired and looking forward to going home. Hardly anyone knows about this but the few that do are getting upset at me because it’s been so long that I’ve been giving her a ride and they’re upset that I cannot tell her that I’m not going to do it anymore or ask her for gas money. I let her borrow my car while I was on my Leave of Absence from work for a little over a week, maybe two weeks and she didn’t fill up my car with gas, not even fill up what she used. I’ve had to fill up my gas tank twice already.

I am exhausted yet happy that I didn’t sleep my weekend away like I usually do. After another hectic work week, I was able to attend my nephew’s football game and ran some errands with my mom, and then today I was able to go to the movies. We went to see “Maleficent” in 3D and enjoyed it along with my favorite “movie popcorn.” After the movies, my mom said she needed to go to help her Aunty pack for a vacation so I sat outside on a bench, trying to stretch out my back that has been killing me. It feels like I need someone to crack it for me but no one will do it except for one person at work. But I don’t want to bother her about it every day. Today I didn’t feel well because of at least three different things and told my mom that I was tired. She said, “Well maybe you shouldn’t have started to take less CellCept then.” I got really irritated because what did that have to do with anything? I asked her, “Do you even know what CellCept does?” She asked, “What?” I didn’t even want to answer that question, especially since she already “knew” or else she wouldn’t have made such a statement, right?  She then said, “It’s a Cancer medication?” I said, “No. I think you’re thinking about Cytoxan, which is a Chemotherapy drug.” I was over with the conversation as soon as it started. My own mother still didn’t understand anything about Lupus or my medication after all these years. She’s always jumping on my back about every single thing that I do or don’t do yet she doesn’t even know what I should or shouldn’t do. I will forever be “tired” or “exhausted” so why even mention it? Especially when this is the type of responses I get, including, “You’re always tired.” If anything, CellCept has caused people to experience more fatigue.

I’m excited about this coming work week. We have Wednesday off (King Kamehameha Day) and Friday is payday along with the upcoming weekend.  🙂

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I just got off the phone with a good friend who I could tell had been drinking. In general, I despise speaking to drunk people. My father was an alcoholic and a “drunk caller.” It was really difficult to deal with him throughout the years with all of his bitterness, anger (mostly at my mom for divorcing him because of his drinking), and him repeating himself over and over again. When I was still in high school, there came a time where his anger turned towards me and I couldn’t handle it anymore. I finally had enough and hung up on him. It was something that I had wanted to do on many occasions but just couldn’t for some reason. After this episode, I wrote a short story called “The Man We Loved.” But I did still love him, I just couldn’t deal with it anymore. I gave him another chance which he again ended up ruining and I didn’t talk to him for about ten years. I had never seen an alcoholic as bad as he was until I met S. Again, I love S but at times I cannot talk to her. I finally told her a month ago that I can only talk to her when she’s sober.

She just called me and I silently listened to her tell me the same story over and over again. I tried not to get angry or to be abrupt about it. I wondered if she would give me a chance to talk as most of the time she doesn’t when she has been drinking and everything that comes out of her mouth is so angry. It sucks the life right out of me. After 30 minutes or so, she asked me how my doctor appointment went. “Well,” I said, “He took me off of the Sodium pills and told me to add salt to my food instead…” That’s when she interrupted me. Telling me that I cannot have French fries (who was talking about French fries?), I should be eating stuff like Kale, am I f—k’n kidding her that my doctor told me to eat salt, that he doesn’t know what he’s talking about… She started to talk about a diet that she wants to impose on her mom, that I should grow my own food and have a garden, etc. I tried to stay silent again, listening to her tell me what I should and shouldn’t be eating as I started to get more and more upset. She said that my doctor is an idiot. She asked me what have my doctors told me to do about my diet. I was silent for a while because sometimes when she asks questions, she will jump in as soon as I begin to talk and then it’s her turn for about 20 minutes again saying the same things over and over again. She asked me again so I told her in an upset tone that they have told me to limit my liquids to 64 oz. a day and that I can add salt to my diet unless I’m feeling “low-sodium” again. She asked if I was upset at her, and not to be upset with her. I told her I would stop if she would stop telling me what I should be doing. She agreed and then started going off about my doctor and the salt again! I told her I had to take a shower and we both said bye. Maybe I should really go and take a shower. Sorry for venting. I’m over talking to family and friends about anything that has to do with my Lupus or doctors appointments. It’s not worth it.

I want one of these!

I want one of these!

My “Lazy” Day

I woke up this morning around 7:20 am. Even though I fell asleep at a decent hour last night I was still exhausted. The last two weeks at work have been super busy, long work hours (or staying after work to help someone out), and a morning schedule which varies daily so I can never get used to my schedule. I start work anywhere between 5:45am- 7:15am. I need to be there 15 minutes before our first patient comes in. I drank some water and took some of my morning meds. It was cold and rainy this morning (it still is), a perfect scenario to crawl back into bed and bury myself under the covers. So I did. It was marvelous. And I fell back asleep. I did this a couple of times (making sure I took the rest of my medication) and finally arose at 3pm. A part of me was upset that I wasted my day. I felt lazy. But I knew that my body needed the extra sleep. During the weekdays I feel like I am only able to muster enough energy to get through my work day. Sometimes after work, I’m too tired to drive. So I sit on a bench in the parking lot until I force myself to just drive home. Today I was a little disappointed in myself for missing my 2nd cousin’s graduation party at the beach. But with the pain in my back and feet on top of being totally exhausted, I knew I couldn’t make it.

Yesterday was wonderful because I was able to go down to 10 mg of Prednisone. So the doctors are still weaning me off of this vile pill. I hope that my health continues to improve. It’s very exciting. When I think about the time that I was on leave from work, I see that I have come a long way. It was a dark time where most days were absolutely miserable, too much uncertainty, regression in my progress, getting diagnosed with more diseases or “conditions” that have no cure, and all the pain and headaches that were worse than I had ever experienced in my life. At the time, I could not see the “light at the end of the tunnel.” But I feel like I am almost there and ready to be in the clear for as long as my body allows. It makes me appreciate my life more. For most of my life I was chronically depressed and wanted to cease to exist since that seemed like the only option to “stop feeling”. In the past several years I have worked hard to be more positive in the hopes of living a better and happier life. I no longer am in a constant state of depression but still have moments here and there. I realized through this last Lupus flare that I did not want to die yet and was determined to fight.

Even though there is less protein in my urine (my labs show a huge difference since December), I still have bad edema. I started to notice bloating in my feet and ankles again. For a while the water retention was only manifesting itself inside of my body (that’s what I had been told). And I believed it because I could and can still feel it. All the bloating in my stomach, thighs, and face were the most uncomfortable. And still is. I’ve noticed more bloating on my arms and back when I wake up in the mornings. And when I carry my purse by hanging it on my arm, I can see all the indentations when I put my purse down. This makes me believe that even though less protein is being filtered through my kidneys, my kidneys still are not functioning at a decent level. Does anyone have any experience or thoughts on this? I have an appointment to see my PCP on Thursday so I can ask him then about it since I do not see my Rheumy or Nephrologist for a while.

Pink Hibiscus I spotted at my Aunty's house.

Pink Hibiscus I spotted at my Aunty’s house.

Atrial Fibrillation and Warfarin (Plus Kidney Update)

An Atrial Fibrillation is basically an irregular heartbeat which can cause poor blood flow to the body. AF is associated with heart palpitations, shortness of breath, weakness, fainting, chest pain, and/ or Congestive Heart Failure (CHF). The risk of stroke for people with AF increases five times and can even be a greater risk if high blood pressure is also present. The risk of stroke goes up each year. There are different treatments depending on the Individual’s risk for blood clotting and stroke. Some people are advised to take baby Aspirin, others may be prescribed Anticoagulants like Warfarin, the use of pace makers may be necessary, etc. Warfarin is a medication that helps reduce the risk of blood clotting and stroke. The danger in using an Anticoagulant is that it may increase the risk of major (sometimes fatal) bleeding or can cause a blood clot if not monitored carefully. This is very general information and does not include all the risks and side effects of being diagnosed with AF, the use of Warfarin, or other Anticoagulant medications. If you have any questions or concerns, you should speak to a medical professional.

This is based on my experience with AF and Warfarin. A couple of months ago, I started to feel like something was wrong with my heart beat but I wasn’t sure how to explain it. I couldn’t even tell the doctor if my heart was beating faster or slower. It was just weird. Different. On one of my hospital visits, I told the Hospitalist about this and he said they would monitor my heart during my stay but no one ever mentioned it again so I just let it go. I’m not sure if they were really monitoring it or not, but the tests that they performed previously came out fine. I figured it was just another strange Lupus occurrence that remains undetected (which makes me look like a Hypochondriac). My PCP (Primary Care Physician) later gave me a referral to see a Cardiologist.

By the time I saw my new Cardiologist, I had already completed a recent EKG and Echocardiogram during one of my hospital visits. The tests came back fine. He wanted me to wear a holter monitor for two weeks to record any “events” that might occur. For the most part, if I felt anything strange with my heart rate, I was supposed to manually record it on the device. There was also a drop down menu for me to record what I was doing at the time of the “occurrence.” It was a real pain to wear that thing for 24 hours a day for 2 weeks (actually, I could take it off while I showered), but still. If I remember correctly, the only thing that the monitor would pick up on its own was heart arrhythmias. I was so happy the day that I could finally take that thing off. I figured I would receive a phone call from my Cardiologist’s office to tell me that nothing was detected. Instead I received a call advising me to start taking baby Aspirin and to schedule an appointment as soon as possible.

I went in the following week. My Cardiologist made it very convenient for me by agreeing to see me on the same day that I was going to be at the clinic for an appointment with my Neurologist (even though he didn’t normally see patients on that day of the week). He told me that the holter monitor had picked up an Atrial Fibrillation and that he wanted me to talk to my PCP about prescribing me Warfarin and giving me a referral to “Health Management” (the department that I work in) to monitor my INR levels. He kept saying that I was too young to have this problem and that this was more common for elderly people. I kept thinking that anything was a possibility for me despite my age because of Lupus.

I continued to take baby Aspirin until I saw my PCP. My PCP asked me if I really wanted to be on Coumadin. I didn’t however with Congestive Heart Failure, high blood pressure due to my poor kidney function, as well as my other health issues, I did not want to have to worry about having a stroke too. Especially because I was told that the risk could increase by 3% each year (or something like that). He gave me a prescription for Warfarin and told me to make an appointment in one week at Health Management to monitor my INR levels. When on Warfarin, it is extremely important to follow up and to take the correct dosage of medication. The INR levels will show if your blood is too thin (risk of bleeding), too thick (risk of clotting), or just right. I had three visits so far, weekly appointments. The length between appointments that I have seen so far are anywhere from 3 days, 1 week, 2 weeks, 1 month, and 3 months. The last time I had an appointment (last Wednesday), my INR level was higher (which was a good thing), but my blood was too thin. Usually when they prick my finger, the nurse will have to gently squeeze it so that a little bit of blood will come out. This time, the blood was flowing and was going to drip so I turned my finger so that it wouldn’t fall anywhere. I then had to go to the lab to make sure that the INR level that the machine reported was accurate because it didn’t make sense for my blood to be that thin when my levels were higher than the last two visits. Again, my dosage of Warfarin was increased but just for the day.

INR Testing. I found this photo under a web search under "images." The caption said it came from gastroruas.com

INR Testing. I found this photo under a web search under “images.” It said the image came from gastroruas.com

All I know is that I need to be careful not to get cut or scraped (anything which would puncture my skin and cause bleeding), and if I hit my head I need to go to the ER in case I have internal bleeding. I just realized yesterday when I was thinking about making a dentist appointment that I can’t forget that I’m taking Warfarin. Depending upon what I may have to see the dentist for, I might have to either modify or stop taking the medication before the appointment. I know that when people on Warfarin have upcoming surgeries, they have to stop taking the medication. I’m not always the most graceful person. If possible I love to hike (where I may get scraped by a tree branch, slip on mud, trip over an exposed tree trunk), all of which has happened in the past. I also like to boogie board and paddle board (I would need to be careful not to get scraped by coral especially if I “wipe out” and am pushed into a big rock or coral while underwater by the strength of the wave). I’m just hoping that they’ll find that the AF was just a strange occurrence that happened during a Lupus flare and that I can get off this medication. There are just too many things for me to worry about. Since I’ve been taking Prednisone, I started getting a lot of scrapes on my hands. I could just softly hit something (like a table) by accident and end up bleeding. The last time this happened, my hand hit the end of the table so softly that if not for the blood, I wouldn’t have even realized that my hand even touched the table. The good thing is that’s not happening as often as it was before when I was on a higher dose of Prednisone. Earlier last week (before my appointment to check my INR levels), I was scratching my arm when all of a sudden it started bleeding a lot.

And here’s a random update regarding my kidneys… I received a short letter with lab results from my Nephrologist. He said that my “urine albumin leakage” (as he calls it) is much better and I could reduce my Prednisone to 15 mg. (I haven’t seen him yet to let him know that I have already started doing that per my Rheumatologist). He always has a graph to give to me which I like a lot because it also shows previous results. Right now the results are fabulous! I am so close to the point where I can probably stop taking most of my medication. I’m not sure what the unit of measurement is but on 12/14/13, my urine albumin leakage started off around 4300. Since then it has been going down gradually but between March through the end of April it significantly dropped to around 600.

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

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

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

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

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

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

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

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

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

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?

Brief Update… Okay I’ll be a Little Less Vague

So I’ve not only been “Let of out jail” again, but I was able to tear off that “Errr…Urrrr… Arrgghhh… two week holter monitor off today.” And yea, I tore it off and threw it in my bag. And yes, it’s all ready to mail out tomorrow. Out of my house, out of my site, OUT! FREE AT LAST (YESSSS I’M SHOUTING)!!!! Not quite “Sound of Music” dancing yet, but that will be in the future along with that tattoo idea. To hell and back man.

I’m sorry this is so vague but I am overly tired. Since I’m still up… I was just let out of the hospital again yesterday~ actually since it’s past midnight I was released on 3/26 (not only did I have my issues with SLE, active kidney nephritis, all those medications to battle this, sick/ bronchitis/ pneumonia progression since March 4th and still have not returned to work, but I’m not sure how long I had low sodium for. It sucked big time!!!  Decided to take a leave of absence until I get totally better since I’ve been hospitalized in December, February, and now March. It was such a difficult decision to make based upon my pride, work ethics, not wanting to admit that I need this, and other internal conflicts. I wasn’t feeling the best when I left the hospital however when they asked me if I felt okay enough to leave or if I wanted to stay at least one more night for observation and rest, I jumped at the opportunity to go. I would have stayed because I was still feeling weak and knew that since I was finally sleeping all I really needed was probably sleep and to make sure that my sodium level didn’t drop again (since it ended up dropping while I was in the hospital at one point to 113 which was the lowest it’s ever been) but the nurse that came in that morning for the 7am shift made me so angry that I was not going to deal with her on top of everything else. I took a photo of the board they use to write down their names, their “goal” for me, and where she wrote down/ broke down the times I could have “x” amount of liquid to equal my daily intake of 64 fl. oz. of liquid per day to “make it easy for me to understand,” (as if I was stupid and this was a brand new thing that just started that morning and I have not been at least trying to adhere to this since December 14th of last year when I was first admitted into the hospital)- so for over 3 months! I’m a (sorry) “grown ass woman” and know what I need to do which is difficult in and of itself as I used to drink way more water and liquid than that per day. But all I was asking for was all ice and just a little bit of water (knowing that ice melts and I would still get just a little more fluid ounces for the day), it’s more refreshing (which would make me more comfortable), and I wouldn’t have to drink a bunch of water to get this relief/ refreshing feeling. She mocked me as if when the ice melted, it would still equal the same amount of water (a nurse during my first visit actually offered to take the time to figure out exactly what the difference would equal so I could choose ice or water and stay within the daily fluid restriction), and she mocked me and “made me look stupid” in front of the girl that she was training, she turned around right after I asked her if I could have a full cup of ice and just a tiny bit of water in there and asked someone else to give me “x” amount of water and half of that ice (which was not even half of my total container which I requested and never had a problem requesting before). I didn’t want to drink it, I wanted to suck on ice, I didn’t want all the ice to melt, I didn’t want to keep calling and bothering them when I wanted or needed more especially because it seems like everything takes like at least an hour to get after you call to request it, etc. And why would I need 14 oz. of water during midnight through 6 am when I would be sleeping and was assured by the head nurse that they would request for me not to be woken up during those hours so I could actually get some uninterrupted sleep for the first time in like five days? I could see myself having to “beg” for my medication. In response to my friend who is a nurse telling her that I had told her I was hungry was that I “must eat a lot at home” (which I don’t, I am very picky about food so I wasn’t eating a lot of the entrees but a lot of salads, and sides.

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I also found out that I was on the wrong diet… I found out today from the dietician I saw). For instance, by the time breakfast came, it consisted of one slice of toasted bread cut in half & I’d put a little bit of jelly on it; half a slice of a small bagel (since I don’t like meat or their vegetarian sausage or whatever), a small cup of fruit, green tea (and sometimes they would give me a small container of apple juice or cranberry juice~ or they wouldn’t because of my fluid restriction). They used to give me unsweetened iced tea when I ordered that until they decided I couldn’t have caffeine anymore. Then I would have to wait five hours until lunch when I would have more crappy food (my diet consisted of a “healthy heart?” diet or something like that (which I was told was just because of the kidney problems) and then on top of that no sodium at all so the food was not only scarce but disgusting). Today the Dietician told me that they were basing it on the best diet for my diagnosis at that time but later when the hospitalist came to ask her about it because of my questions and the hospitalist was confused as well and wanted further clarification, they figured out together that I actually had “SIADH.” She told me to write it down because it was “a long one.” It stands for “Syndrome of Inappropriate Antidiuretic Hormone” and basically my body still retaining water but without the outward appearance (like it won’t show up as edema in my feet) but is more internal). Also resulting in lowered levels of electrolytes (including sodium). So this is why I was cramping more in the fingers, toes, feet, calves and thighs; the reason for my severe headaches (or at least explains them in part), confusion, and a bunch of other stuff I was going through. I guess it made sense later because they treated me for dehydration and sodium loss by giving me a lot of IVs of fluids, sodium, etc. and then even more after they performed another spinal tap. My sodium went up for a while and they took me off. However I was wondering why they came back at midnight to put me back on the IVs (my sodium dropped further to 113) and on top of that I had noticed that I was swelling even more after all those fluids, but you could just see it mostly in my face.

In the meantime, the hospitalist has taken me completely off of Lasix for now until I see my Nephrologist on 4/3 and given me Sodium pills (1 gram tablets/ 3x a day), and my Rheumatologist who visits the island twice a month (who I had an appointment with today) said I could start reducing my Prednisone from 30 mg/ day to 20 mg/ day). I am super excited about that and hope that everything is awesome. I won’t go through ALL the grueling details regarding yet another hospital stay but will stick to the main points (if I stay on track, which I will try. And now that I don’t have low sodium and know what it feels like with the weakness, cramping in extremities and feet/ leg muscles, the extreme fatigue that’s even worse than usual, and the maniacal confusion, for lack of a better term right now- delirious, but worse, I think I can handle the task more efficiently). 🙂  And not everything was horrible, I had some wonderful nurses, technicians, and other medical staff that made everything much better and I greatly appreciated and let them know that I appreciated them and their care. For some reason I also can’t have caffeine. I have to figure out if that’s “for real” or not because it was hard enough for me to give up soda in the first place but I was substituting that with unsweetened iced tea and trying just a minimal amount of Stevia as I was trying to stay away from high fructose corn syrup/ fructose/ aspartame/ and splenda for my own reasons. I would like to continue drinking that for now if possible but if I shouldn’t I will refrain but if it was because of a misdiagnosis, I need to know. I’ll figure it out soon enough.

I’m up because after my appointment I ran into a friend of mine who needed someone and of course I was going to be there for her. I picked up and quickly turned in my LOA paperwork to my manager and told her I had to go asap but gave her a general run down on my paperwork and told her if she had any questions to call me and then escorted my friend to the ER to report a domestic violence charge. After everything was over I took her to eat, we talked, decided we were going to pick up her kids and she was going to stay at my house. She called the police to escort her to pick up her stuff and was supposed to meet me back at my house and it was pretty late, I was overly tired (still trying to catch up on all the sleep and all and not feeling the best) and it was taking way too long for her to come back but I was too afraid to call because I wasn’t sure what was going on and didn’t want her husband to answer). I knew she should be safe because the police were there but knew they had to be gone as it was 2 hours later. So luckily I also took a shower, and did other things as I waited, making sure that the phone was nearby and audible at all times. Finally I realized that I could try to text her oldest daughter as she knew what was going on and I felt terrible because it was like midnight already. Luckily she was up and said that she was with her mom, they were talking, she was pretty sure her mom decided she was going to sleep at home that night. I thanked her as well as apologized a few times for bothering her at such an hour but I was just concerned and to let her mom know if she changed her mind, to give me a call, she still had somewhere to stay. I was a little disappointed that I feel as sick as I do yet I tried my best to extend myself way beyond what I should have done for anyone and she couldn’t call me to let me know what was going on and that she had changed her mind. I won’t say anything about it because I don’t want to hurt her feelings and the only reason I say something here is no one that I know reads this blog so I know she won’t find out and feel hurt, bad, or anything; because that’s the last thing that I want. So now I can’t sleep so I might as well blog a little since I’ve been gone for a while.

Well before I go to bed, I did want to research for a moment and see if a dog can learn how to detect low sodium levels and then if so, if my dog can become certified to do this so she can become a service animal and be with me all the time. Lol. She’s my baby.

Where my Initial Research on Lupus and Membraneous Glomerulonephritis Ended

There was a lot I was going to write about but luckily I looked back to that first long posting about my basic history with Lupus and Glomerulonephritis and saw that I already mentioned a lot of that information. As this blog progresses I must warn you, I may sometimes forget and not be able to go through all my posts to see if I’ve said it before. I hope you can bear with me and just pretend it didn’t happen. 🙂 Or perhaps it would be a good “refresher” for you somehow. 🙂 I’m trying to be positive here and to give you fair warning.

So as I had previously mentioned, I did research extensively on my diseases, was frustrated, overwhelmed, when I tried to share this information with my significant other, it was all in vain as apparently it was pertinent and important only to me. I felt even more alone, and as family members and other friends reacted in similar ways, I closed up even more. If you live with such a disease which is unpredictable I am sure you have experienced (but hope you haven’t) the feeling that you are even more alone than you thought. Especially when you had never heard about the disease in your life, or maybe you heard it mentioned, or know just a little bit about it, but it was always about someone else that you didn’t know. However you may know someone with the disease and when you got it, realized not only what they were going through but that you had absolutely no comprehension before about how they felt at all (whether emotionally, physically, especially when pain is involved, the exhaustion, etc.). I learned that I could not make future plans and stopped. I was taught by my dad (my parents were divorced by the time I was around 3 years old) but even though we at one time lived thousands of miles away at the extreme sides of our country (Kaua’i and South Carolina), he did his best to keep in touch with us, had us come out to visit him or vice versa, and at one time moved back to Kaua’i for a year or so in order for us to be able to see him more. Even though he was not always physically there and he had his issues, he taught me some very important life lessons, or at least I find them to be of importance and core values. One core value was if you say you’re going to do something, then you should do it. “Your word” is important and shows integrity and respect. So for me I’m always on time, even earlier when meeting someone and I always meet with them even though I may not feel up to it that day for some reason because I said I would and it would be rude to cancel at the last minute when someone else is looking forward to something that you both verbally committed to. But when I was sick back then, I had to stop making these commitments because I did not want to break my word. Once you broke your word, how could anyone ever believe anything you said again or trust what you said from then on? I had to live day by day because maybe I felt great or okay one day and then the next day I would be in severe pain, exhausted more than usual where it felt like an effort just to sit up and breathe air, bad migraines, nausea, or whatever symptom I might have that I did not plan on since Lupus does not work on a schedule. There are no designated “off” days with Lupus or days that you will definitely feel worse or definitely feel better. It’s a day by day, moment by moment disease.  Not being able to make plans or commit to them also contributed to me closing  up more as I wasn’t as social as I once was. And because my friends did not understand, some got angry or hurt about it and eventually no one asked me to do anything anymore because I could never say that I would definitely do it.  This caused depression, a lot of different things did back then and reoccurred last December when everything came back suddenly without warning, worse than ever and I ended up being admitted into the hospital for the first time ever in my life.

But back to the initial research. I pretty much found out that Lupus affected everyone differently.  I now viewed the majority of the information I had gathered as “textbook” or “theory” but not actual experiences. This subject was something I was more interested in. I knew that because everyone’s experience was different and there were various stages or progression of the disease in individuals, I would never really know exactly what would happen to me, however I felt it would give me an idea. Better than just a theory, this would be about real people that shared the same disease, just at varying degrees. To me to know something would be better than knowing nothing. Maybe I could be prepared just in case something similar happened to me, or know the possibilities of this disease and how kind or how ruthless it could be. In my search I ended up at message boards. I browsed around a bit at a few of them until I found one that I liked more than the others. I read main topics regarding Lupus itself, people’s stories, questions that members would post and the responses they received from other members who either went through the same or similar situation, or provided helpful information or advice, or just to say that unfortunately they did not have the answer but wished that person the best of luck or some sort of kind word or some form of encouragement. It felt almost like a family, but not. But people who actually “knew” what each other was going through, most of them probably feeling just as alone and isolated as I did. I was shy and quiet for most of my life and did not post that often but did post a couple of questions, explaining what I had, what I knew, what I was now newly experiencing, and asking if anyone could offer me an answer as to what might be going on. I received great responses and eventually started to respond to the posts of others if I had anything to contribute. On one such site, which I haven’t been to in probably a decade, I did end up in contact via email with a woman from England. One day I had gone back on just to send her a message and check up on her but I never received a response. I still wonder to this day about her when she pops into my mind. Did she just tire of the site like I did or get sick where she just couldn’t get on the computer? Was she okay? Did she pass? I hope the best for her and really for all of my fellow “Lupies.”

I had read online about Lupus support groups which existed in some places across the country, including The Lupus Foundation of America. Meetings that you could attend with other people who had Lupus. I thought that would be great, however I do not believe it existed in any of the areas where I lived. And again, being on the shyer side, it was more comfortable for me to “hide” behind the anonymity of a username on a message board. I had grand ideas in the last month, (though still horribly depressed), that I wanted to start a Lupus group here because when I researched it online, it appeared that one did not exist here. I emailed someone from a website I found that I thought could help me find out if there might be one that wasn’t showing up online, especially since I found this Lupus website  under my state (Hawaii). I still haven’t heard back. Who knows, maybe that’s an old email that is no longer valid or no longer checked. I thought about what type of meetings I would like to hold, how it would be anonymous (kind of like AL Anon or AA since not everyone wants others to know their personal health business, especially when it comes to possible employment issues), it would be free to join, if we wanted to do events we could tentatively plan them and do fund raisers or something to raise money for any events or miscellaneous we would need (like maybe if we were raising money to do a walk for Lupus, if we were able to walk, we could participate and have similar t-shirts made to unite us as a group with our purpose/ name on the shirt and the fundraisers could help us with that since people have their own financial issues, especially with medical bills so I didn’t want to ask for “dues” of any kind. I wanted it to be free so that people who really wanted to or needed to come wouldn’t hesitate just because of the money factor. Money we raised for our walk (which wouldn’t exactly be set for a specific date because of the unpredictability of Lupus) but maybe over a time span that we all agreed upon and we could walk at anytime during that period and even walk on separate days to meet whatever our walking distance goal was. Maybe we could even have a family member or friend agree to be a designated walker for anyone in our group should that person not be able to participate for whatever reason. There were a lot of details to work out and it would be something everyone would have to agree upon but it was one such idea that I had. I thought the group would really help people and knew that they once had meetings here because a friend of my mom ended up with Lupus and she would go to the meetings but when I asked my mom about it she said that she thinks the meetings stopped and it had something to do with the people always asking for money. Because I work at an outpatient clinic, I thought that it couldn’t hurt to ask different providers or educators if they would be willing to either do an interview with me where I could ask questions that our group had to present them with the answers of a professional in that specific subject, including diet education. Or if they would agree to actually come to one of our meetings, even if for only a portion of the meeting to do a little speech and question/ answer session, I would have preferred that. I wanted to offer so much that I thought might not be offered anywhere else, especially for free. I would even try to find sponsors or whatever I had to do. Yet I knew I was still battling with my loss of kidney function, on so many new medications including 2-3 immunosuppressant drugs which made me even more afraid of getting into contact with sick people, my blood pressure was unbelievably high for the first time in my life and it wasn’t going down even though they doubled my dosage and then doubled that dosage. I was told I would have to wait for 4-6 weeks to see results but it was almost 4 weeks and I still wasn’t seeing a big difference. My blood pressure has always been normal or a little lower than normal which was fine, at my worst point in the hospital in December, I saw it go somewhere over 200+/114.  Since then as I was monitoring it on and off as well as seeing my PCP as well as a whole bunch of specialists, I would see my blood pressure then. Always 170-200/ 87+ – 100+. Since I have seen my new Neurologist last week I believe, he asked my Nephrologist if he could change my blood pressure medication from Lisinopril to Candesartan. My Neurologist said it would help with my blood pressure plus help reduce my migraines which he was sure was Lupus induced. But when I mentioned the migraine part to two of my doctors, they said they never heard of that which made me start questioning myself as to what I may have thought I heard but never did any research on it and probably will one day just because I’m curious but am not concerned about it right now because all I really care about it is my blood pressure is going down.  Yesterday it was closer to “normal” and then today slightly below normal. Talk about being grateful and ecstatic for the things that seem so small, that other people don’t have to concern themselves with, that we take for granted when we have healthy bodies. Because my blood pressure is going down, if I understand correctly, this means that I do not have to be so concerned about my Congestive Heart Failure that I was diagnosed with in December as much, that my kidneys are probably getting even better (function is rising back to a “normal” level where I don’t have to concern myself about changing my current medication CellCept to a combination of those pills along with Cytoxan. I was highly concerned with the whole connection between my kidneys, my blood pressure, and my heart.  Now I feel relieved that I don’t have to worry so much about my heart, I just need to maintain this blood pressure, which will in theory I believe indicate success in my treatment of the kidneys where I can possibly go back into remission within the year, maybe even sooner. Last I heard from my Rheumatologist, there is still some water in my lungs and I have to adhere to my strict fluid restrictions. I can have up to 64 oz of any type of liquid (drinks, soups, foods like grapes or whatnot that might have “juice” in them) which is very difficult for me as I would drink approximately five 32 oz of water a day at work alone. But I know I have to listen because my kidneys aren’t functioning at 100%, they aren’t getting rid of the “waste” it’s supposed to filter out and I still have edema. It used to be extremely bad where my ankles were unbelievably huge.  I have bony feet and hands but you could see absolutely no bones, just grossly hugeness. If I pressed down, I could press deep and my skin would stay indented for a long time, I don’t even know how many minutes. Later not only were my feet and ankles swelling, but I was extremely swollen all the way to my thighs, then it started to show in my face (I gained a lot of weight in a short amount of time). I never went to my doctor because I had edema before and it so happened I had an appointment on day 3 of it where it was still bad and showed it to him.  All he did was press down on it (like I had a hundred times) and said, “Yeah, you’re swollen, see the indentation and how long it takes to go back to normal?” And that was that.  So I thought it wasn’t a big deal or surely my Rheumatologist would have said something, knowing that I had Glomerulonephritis as well. (This is just one reason I refused to see him after only two visits). At this time, my edema is not as bad yet I still have swollen ankles, legs, face, puffy eyes, and sometimes no eyelids because of the water retention. I need to make the job of my kidneys as easy as possible right now.  When nurses that I worked with finally talked me into going to see my doctor I did so and he ordered lab work for me immediately as the edema would be indicative that something might be going on with my kidneys or to find out exactly what was going on. I felt like the Rheumatologist pretty much did me a great injustice that could have perhaps cost me my life if I left everything alone because he wasn’t concerned about it. I trusted him at first to know better than I did and figured I was worried about it for nothing. My weight still fluctuates greatly because of this. I want to be 130-133 lbs. again at the most. Right now I’m at almost 148 lbs. On a January 29th visit I was 158 lbs. And I did lose more than the 10 lbs. but then gained some back. I’m not as concerned with that as I was with my kidneys, blood pressure, and heart because I know that once I get those things under control, I will get back to my target weight.

About two weeks ago I had my hair chopped off and had it cut a little bit more this past Saturday. I was at the point that I was completely stressed out (one thing was my whole health issue that I had been worrying about daily for the past two months and seeing no changes for the better), and then came unhappiness, stress at work & every aspect of my life, some of the medication like Prednisone makes me feel angrier than usual, more tired, less patient, etc. (a few of the reasons I never wanted to be on it again), coming to terms with the fact that I could never have a baby at all.  I especially wanted to carry my own child so I could have a “mini me.” She would be a part of me (or he) and I would have this life to take care of and love and to teach wonderful things to. I didn’t want to miss out on this life experience and I wanted to experience having grandchildren, having a family of my own. One of the first things I thought of when all of this started happening unexpectedly was about my dog (my “baby”) Mia. I love her so much it’s ridiculous to some and I am grateful for her every day of my life. I was afraid that I could not die because who would take care of Mia the way that I do? My mom told me she would take care of her for me if something should happen to me and not to worry about such things. But I told her it wouldn’t be the same.  I told her Mia sleeps in bed with me and she would never allow Mia to sleep with her. I was afraid that because Mia didn’t know that I died, she would think I abandoned her after she had been sad for days or weeks waiting for me to come home. One thing I feel guilty about is when I had to make a rush decision and put in my two week notice at work in Colorado, bought an airline ticket, started boxing up things and mailing them back home. I finally had the money to move back home (it had been twelve years since I wanted to return and an opportunity came up that allowed me to come back). Hawaii’s quarantine rules are very strict and when I glanced over the paperwork, I thought I could get her to come with me under direct release because I always took her to the vet since I first got her as a puppy and she already had two rabies shots, she was an indoor dog so didn’t have rabies, never had fleas or anything, she was already spayed & micro chipped. I knew that she needed to have a rabies titer but I thought that after the results came back all would be well. I was wrong. Even though it showed that she did not have rabies (and she already had her two rabies shots previously and the second one was still good for about 2 more years), there were two options. I could either have her come with me to Hawaii anyway but she would have to be quarantined on a different island for 120 days. The other option was she could wait 120 days where she was in Colorado and then I could have her sent to me and pick her up on O’ahu. It was one of the hardest decisions, both “unacceptable” to me, however the “lesser of the two evils” was for me to leave her with a friend that Mia was used to and knew instead of me “selfishly” taking her with me and having her locked up in kennel conditions on a different island where I wouldn’t even be able to see her all the time but it sounded like they wanted you to come visit and play and feed them everyday. I felt like it would be akin to me “putting her in jail,” that she would feel truly abandoned and confused. I couldn’t do that to her. Some told me to just leave her there and give her away to someone. How could I do that to Mia who I considered a part of my family? Who I loved so much? It seemed like one of the most callous things a person could say just because they never felt an attachment to an “animal.” So I left her with a friend. My friend said that Mia would wait by the door everyday around the time I would return home from work and she would not budge and go to bed but would wait until it was very late before going to the bedroom. She started sleeping under the bed, my friend said Mia seemed depressed. I felt such guilt. If I knew I was going to move I would’ve prepared her a lot sooner; also because I did not prepare her, if I knew that I would be faced with this decision, I would have stayed in a very unhappy situation and possibly lose all the money I had earned to move back home to paying not only my living expenses, but a friend who I was helping out who basically lived off of me for a couple of years. But I would’ve waited for Mia to be fully prepared and then leave if I still could and have her directly released with me. So if I was so worried about Mia, how could I with a good/ clear conscience  have a child when I don’t know what may happen to me in the future or that even if I go back into remission for another 10 years, I can never be assured that this won’t suddenly happen again. It would be selfish of me to do so and if I can’t leave Mia, how could I leave my own child motherless? Coming to terms with this realization added greatly to my depression. So after that second hospital visit in two months I went straight for the hair, which is what I sometimes do. My hair was finally growing out from the last time I did it about 4 years ago and was at the middle of my back so I was waiting for it to grow down to my waist again and then maybe consider cutting it off, or maybe just trim it to my mid back or something. I’m actually happy that I cut it though. I do feel like a “different” person, I have been more positive lately (which I thought would be impossible) since I was so negative about ever thinking positive thoughts in my life, my creativity in all my areas of interest are returning, I’m more inspired, and slowly I’m improving my life and living space in ways that are affecting me in positive ways and reducing stress and anxiety.

I like photos. I don’t like to be in them but I eventually want to post photos, maybe make a gallery. I did want to change my Avatar and personalize it so I was thinking about using a picture I have from last year. At some point I’ll post more. I don’t have many lately but I know my Aunty made me be in a photo when I really didn’t want to be because I was bloated that day, I did not like the fact that I had gained so much weight, and wasn’t feeling well that day. But I don’t even care what negative thoughts are directed at myself or my photos because I know a lot of it is caused by my current health condition. And I think it might help some people out, who knows. I remember when I was first diagnosed and I gained a lot more weight and got up to around 190 lbs. and I was so ashamed of any photos that I was “forced” to take part in. I wish I had one photo from back then which made me so depressed at that time that I even wrote a poem titled “Ode to Prednisone.”

I know I have fully strayed from topic. It’s almost 4 am and I was at work yesterday by 6 am and today I work at 7:15 am so I don’t know how this day will be for me but I really wanted to blog and I’ve been having issues sleeping.

However I do believe I touched on the subjects that I wanted to cover: I stopped researching the topics of my disease but started to look for online Lupus forums (Lupus boards) where I could read about other people’s experience or try to find posts that I felt were pertinent or similar enough to what I was going through to find out just how Lupus and Kidney disease could possibly affect me one day. I wanted to know the experiences of real people. One thing I noticed is when I get a new medication I will usually look it up and read about all about it including the negative side effects but when I would go to the message boards to check on what was going on with other people on the same medication and dosage as I was, multiple people were reporting the same negative side effects that weren’t listed on the other informational sites. I believe these online message boards can be of value whether you just want to browse for answers but better yet if you like it and trust it enough to sign up and become an active member where you can ask questions as well as respond to other people’s posts when you feel moved to do so. It’s always good to contribute in some way if you are able to. You never know what an answer, word of encouragement, or some type of acknowledgment or validation can mean to that other person who may be afraid and feeling alone. Maybe he/she is truly all alone without a family and friends that come and go, basically no one who really cares.

Goodnight for now. My baby has decided to leave the couch a while ago and sleep in bed. I miss her. And I need my rest. 🙂 Hope you have a great day or night wherever you may be.

Two Days Worth of Doctors Appointments

Two days worth of doctors appointments and medical related miscellaneous have wiped me out yet I cannot sleep. I know that I need it or I will run myself down. It doesn’t seem like much when you’re healthy but with the way that I’ve been feeling, it was almost too much. Yesterday, February 27th I had my first consult appointment with a Neurologist at 7:00 am. He changed my blood pressure pill (which is somehow supposed to help with the migraine headaches), prescribed me some migraine medication, and ordered an MRI. When I went to Imaging, their next available MRI was in March. I was disappointed yet know that anytime you see a specialist or need to have a procedure or test done, months is the normal wait time. Luckily I knew someone who made a phone call and the tech was willing to see me right then. I was grateful and completed the MRI. Next I went to the clinical lab to complete blood and urine orders for my Primary Care Physician and Nephrologist. From the lab I walked over to Medical Records to pick up my two recent hospitalization records that I requested. It seemed like a long walk as I become easily out of breath lately, sometimes even having to take a breath after a few words when speaking to catch my breath, taking the elevator instead of the stairs, and other things that make me feel “lazy.” I made a few more stops and then off to my last appointment of the day. Something I set up last minute after seeing my appointment schedule the other day, feeling overwhelmed, & thinking about all the paperwork I need to do and organization necessary. The best appointment of all. I treated myself to a two hour massage. My back, body, and spirit desperately needed it. It was awesome for the time that I was  conscious. I fell asleep and at one time woke myself up with what I wasn’t sure was a snort or snore but I didn’t care and fell right back asleep.

Today (February 28th), I had my first consult appointment with a Cardiologist at 9 am. We have some tests planned as well. I will have another Echo done next month and after that appointment they are also going to teach me how to use a device that I will wear for two weeks to monitor my heart. From there we will determine if further treatment is necessary or not as one of the treatments that I am on for my kidneys is the same thing that would be prescribed in one such scenario. At 11:30 am I went to see my Rheumatologist, which was an hour wait. Again nothing new yet never fun. He went over my lab work and told me that since I just started the treatment for my kidneys about three weeks ago, it will take a while to find out if it is working. I asked him for an estimated time frame and he said two months. Two more months of waiting just to see if this is working or if we need to try something else. He clarified a question regarding Plan B. Along with everything else, I would be taking Cellcept in conjunction with Cytoxan and not completely replacing the former with the later. He said I still had a little bit of fluid in my lungs and osteopenia in various places, but other than that, I just have to hold tight, keep seeing my doctors, and do more lab work closer to my follow up visit. The last appointment of the day was at 4 pm with my Nephrologist. My kidney function has improved although not near where I need it to be but I’m happy for the good news. It seems like there will be a lot of waiting. At least five more weeks to see how effective this treatment is. I am on so many different medications right now that I really don’t want to take anymore and can’t wait for the day that I no longer have to take all or any of them.

I plan to tell you about my first hospitalization in December, exactly what’s going on medically with me as far as I understand it, as well as how I’m feeling but one thing at a time. Until next time, remember that there is always something to be grateful for, you just have to direct your focus there. I need to tell myself this often. But it does help when I’m able to do it. It wasn’t always like this for me. I can tell you more about that later but for now I should get some sleep. Tomorrow will be my last appointment for the immediate future and then I return to work on Monday after the weekend. Wish me luck. 🙂

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