Ad Nauseum

I like Latin and I’m random. And yea, nausea.

Lupus is so random. Last weekend I’m laughing on the phone with a friend and was able to go to the “other side” of the island with my mom to pick up something that she will gift to her aunt next week when she flies out to California. It has been miserably humid for the past few weeks, as storms move towards us from the distance which we hope will fizzle or veer away by the time it reaches us during this year’s hurricane season. I leashed Mia up that Sunday (now a week ago today) and jumped at the chance to get out of the heat and out of the house! Thank goodness for A/C in the car! If there is one thing that I miss about living on “the mainland” is central air & heat. I usually do not have the physical energy to go out but it was a good day. Later a couple of my friends and I were laughing over absolute silliness. I like those friends that have the same “not quite right” sense of humor as I do. I went to sleep happy, and looking forward to the work week.

At around 1:30am, I got up out of bed after tossing and turning, getting hot, then cold… hot and cold. Usually I can put my blankets half on and half off, or stick my leg outside of the blankets, and the temperature will even out. But it wouldn’t. Everything was uncomfortable. I felt nauseous. Attempts at drinking or eating something did not help. I was miserable. When I threw up, all that came out was what I drank and the little that I ate; mostly liquid, and then just bile. Sorry, I know that throwing up is never a pretty sight or thought. At around 4:30am I text my mom to let her know that I was sick and that I wanted to go to the doctor that day. I really was not sure if I should go to the ER for merely throwing up but I also was not sure what my doctor could do for me at this point. She wanted me to wait until 7 am when she was going to drive into town for line dancing. By 6 am I couldn’t take it any longer and walked over to her to ask if we could go to the ER “now”. I actually thought she had gone on her daily walk so I was going to ask my step father (who was on the phone) if he could take me but decided to check since I was already there if she might be in her room, which she was.

It was horrible. By the time it was over, I threw up about 9 times before I left home, 2 times at the ER, and 3 times when I was admitted and first dropped off at my room in the hospital. They gave me fluids, magnesium a couple of times, my EKG showed the presence of my A-fib, my C Complements indicated a Lupus flare. I don’t know what is going on, it doesn’t make sense. I was there from last Monday and then was discharged on Wednesday. I still felt weak and would have considered staying through the night when given the option to stay another night or go home, if it was not for Mia. I missed her so much. I was the second door from the elevator and imagined someone sneaking her to me. But knew that was not going to happen.

I didn’t want to be a burden to my mom. I already felt bad that she had to take me to the ER again, I didn’t want to be an inconvenience but I feel like it. I told her to do everything she would normally do. She was going to do her line dance practice, and usually will get something to eat with her brother & sister, and pick up anything she needed at the store. I could barely speak the first day any way. I was so weak, in a lot of pain, and unbelievable nausea that would not go away, not even with anti nausea medication through my IV. I just wanted to go to sleep. I knew I would find relief in sleep. I was over tired and felt like I was at Death’s door. Or at least that is the closest to “death” I have ever felt. Finally I asked for pain medicine which made me sleepy and I finally experienced relief for the first time in 9 hours. I remember later that day finally feeling the effects of the fluids, as if they were filling me back up with life. There were a lot of things to be grateful for. I’m just getting a little tired of getting sick.

Oh, by the way, I have “mild to moderate scoliosis.” I can discuss that further with my PCP this coming Friday when I see him anyway for a “routine follow up” appointment.

I feel a lot better now. Very grateful for the hospital staff. 🙂

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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.

The Last Hospital Visit

24 February 2014

So it looks like instead of writing like a timeline of events, I will be going back and forth from the past to present. I will have to re-read my first post later to see what I missed and other questions I may have had at the time in the hopes that it will help you.

When I first started this blog I hoped to write more frequently but was hospitalized on Thursday and although I was released on Saturday, I am still not feeling well to do a lot of things. I thought that the exhaustion that only people who live with Lupus can fathom, as it seems like others take it for laziness, was bad but I have felt even worse in the last few months since my first hospitalization on December 14, 2013.  I will just talk about the latest one here for time’s sake.

This time I went to the Urgent Care because I was feeling terribly weak, I couldn’t tell if my heart was beating too fast or too slow but I was aware of it, I felt like fainting, and my colleagues told me that I was pale… I am not the type of person who likes to go to doctors or make a big deal out of anything. I will work through the worst of my pain, even if I feel sick… up to a point. I finally went to see someone during my lunch hour hoping to be back at work within that hour. I ended up having to draw blood, doing a chest x-ray to make sure there was no fluid in my lungs like there was in December, and to do an EKG. The UC (Urgent Care) doctor was fantastic and although I had to wait for a long time because he also wanted to talk to the Cardiologist for some reason, I was patient. I know how it feels to be dismissed by doctors and I don’t like it.  He took his time with me which made me feel that my health was as “important” to him as it was to me.

All of the results came back fine but my sodium level had dropped again. He said it wasn’t as low as the first time I was in the hospital but enough that he was concerned about possible seizures (I was not aware of that possibility). He said that he wanted me to be admitted into the hospital so they could observe me and hook me up to an IV but he wasn’t sure what the hospitalist would say. So we awaited that answer as well. The Hospitalist agreed and I waited for them to prepare a room for me.

They thought I would just stay overnight but I stayed for two nights. I had already expressed to them the importance of me leaving the next day to make it to my 11:40 am appointment down the street with a visiting doctor. Having no Rheumatologists on the island, there is one at this time that flies down a couple of times a month after the initial consult visit on O’ahu. This was my second visit and I felt it was important for me to see him. I didn’t want to ask him to come to the hospital to meet me, and even then it sounded like he couldn’t because he didn’t have what is called “hospital privileges” at that facility. The hospital did a few different tests on me. As far as my heart, the Hospitalist said it was a “PVC,” Premature Ventricular Contraction. He described it as an extra heart beat. I read about it and it sounds like it’s okay for otherwise healthy people and may be nothing. However given my medical condition, and being diagnosed with Congestive Heart Failure on my December hospital visit, I was still a little concerned. My PCP (Primary Care Physician) just wrote a referral today for to see a Cardiologist. I’ve learned that it’s better to be safe than sorry with Lupus, especially when it has been active like never before.

I left the hospital after a night of debilitating migraine headaches.  I have never experienced anything like it in my life until December of last year. I used to see a Neurologist a long time ago when I was still living in Las Vegas but he couldn’t seem to do anything for me.  Maxalt didn’t work. Frova worked sometimes but my insurance wouldn’t cover it and it was over $300, so he would give me a few samples on each visit. He ran a lot of tests at the time as well to rule out the possibility of something major being wrong with me but there were no substantial findings. I found that a lot of times the answer was merely, “it’s just the Lupus.” Not very reassuring as I once thought doctors had the answer to everything medically related. My directions from the hospital was to make an appointment with the Neurologist, to follow up with my PCP in a week, and to stop taking Lasix because he thought that might have caused the drop in Sodium. I was taking the Lasix for severe edema that I started experiencing due to my loss in kidney function as it wasn’t filtering out all the “wastes” as it should. I am to take it on an “as needed” basis.

My mom took me to see the Rheumatologist down the street as soon as I was discharged from the hospital and no one was there. I called his office (and left a voicemail) and then “Physician’s Exchange” to try to get a hold of him. Finally someone from his office got a hold of me and basically told me (I don’t want to get into how angry I was especially because of how I felt, leaving the hospital when I should’ve stayed as I was feeling worse with the onset of the headaches that can last for days), that my appointment was set for O’ahu. When I initially made the follow up appointment I reconfirmed with the girl that scheduled it, that it was for Kaua’i and she said yes. He will be here again this coming Thursday. So far I have an appointment to see my new Neurologist and Rheumatologist on Thursday, my PCP on Friday for my post hospital visit, I spoke to Cardiology today kind of hinting that I would like to come in on Thursday if at all possible (even though I know that I was hoping for something impossible and thought I may need to wait a month or so to see him) but she said she actually had a spot on Thursday and would “hold” it for me until tomorrow when my doctor sent them the referral. Then I just have the pending Neurology appointment. Lovely. You will find out soon that I am sarcastic, sometimes humorous, and then sometimes I just make myself laugh (which is fine with me, it amuses me). I have to though. It’s always been in my nature and if I don’t, I would go crazy at some points.

I had a note to go back to work tomorrow but I’m still not up to par, no matter how much I try to kick myself in the butt and go into work as I am stubborn and have strong work ethics which sometimes takes precedence over other things, including my health. But right now I think I need to take it easy or else I might have to stay out even longer. I was unstable yesterday just walking and tripped going UP the stairs. TWO stairs! Very pathetic, almost comical but not.

I had my sister chop off my long hair yesterday. I felt it might help with the headaches, if only a little, plus I needed a change. I thought it would be good for the soul. I’ve been depressed lately because my Lupus has never been this bad before and I’m scared because I don’t know what will happen or if all the medication that I am on will really help or not. If Cellcept doesn’t work to get my kidney function back to an acceptable level, the next course of action is Cytoxan. I’m not sure how I would deal with it all including losing my hair so I hoped by chopping it off, it would help me cope better in the event that it should happen. My intention is not to make anything sound dreary, I’m just posting my experience, and hoping that everything will end up happily ever after to give you hope.