My Journey Continues…

I decided to look at this rough period in my life not as a “curse” but as a “journey.” I don’t know the answers or the reason(s) why. Why I’m going through this, why me, why now… Maybe there is no reason or answers, and that as human beings, we try to attach meanings or answers to what life throws our way to try to make sense out of something that just does not make sense. But maybe there is a reason and I am on this journey either to learn something for myself or maybe to learn something to help someone else one day. Who knows. And even if there are no answers and everything is happenstance, we can make our life mean whatever we want it to mean, whether it means “nothing,” or whether we want to assign some sort of meaning to it. I choose most of the time to just laugh or joke about what’s going on. If I don’t I was concerned that I would go crazy and get more depressed. I found laughter, trying to find some peace and trying to reduce my stress/ anxiety as more favorable than the alternative of constantly worrying about the worst case scenarios. I know that the only way I can get better is to rest, listen to my doctors, take my medication, change my diet, stay within my fluid restriction (which is SO HARD!), and to try to seek this thing they call peace. ūüôā I need to meditate. I tell myself this every single day but I forget, or I’m “too busy,” or my mind won’t stop thinking and I can’t quiet it long enough, I am too restless as I feel like I do near to nothing with a long list of things awaiting to be done. It doesn’t help that I’ve always been a procrastinator and maybe just a little tad bit lackadaisical. Just a teensy weensy bit.

Today I went to draw blood for my Nephrologist appointment on Thursday. I left him a voicemail to let him know that I did his blood work already, however it was on the day I ended up in the ER and then directly admitted into the hospital and my numbers were all messed up. I don’t think I blogged about my melt down in the ER in front of my Neurologist, the ER doctor, and my friend who stayed by my side through the ER visit up to the first few hours in the hospital. Very embarrassing. I was crying hysterically that I could barely breathe and thought I was going to hyperventilate after they told me that my blood work came back and that my kidneys that had finally started to go up steadily over the past 3 months was almost right back to the point where all of this started up again back in December. I thought it was over already, or that I was either going to have to go straight to Cytoxan or worse as my kidneys back in December were close to the point of needing dialysis. After they got my sodium levels back up and the pneumonia started to subside, my numbers got better (I’m not sure how much better) but at least one of the numbers (maybe my Creatinine level? I’m not sure) was better than it had been in a long time. I’ve learned that Sodium can really mess someone up. And that’s why even though I could never be on a “diet” in the past, I now know that eating a healthy diet and eating enough of certain things (proteins, potassium, sodium, carbs, vitamins, etc.) is so important where before I just didn’t care and didn’t give it a second thought. I guess when one is “healthy” or at least not having crazy symptoms, we sometimes take our health and bodies for granted. Or at least I did. And I know from ending up with Morton Neuromas in both feet that I took my feet, being able to walk, run, snowboard, standing, and even laying down in bed without pain was something I never had to think of and were all things that I “took for granted” without knowing or meaning to because pain like that is something I never knew existed. There came a time when I didn’t remember what it felt like not to have that pain and days I wished that just for a day, or only for a moment, if I could just experience no pain in my feet I would be content. I remember watching the blue people movie around that time (what was it called? Avatar. Lol). I wanted to cry and totally could relate to the guy who in real life couldn’t use his legs and when he was an Avatar all he wanted to do was run like the wind. At least that’s how I remember it. Strange that now that I’m going through all of these other things, my nerve damage doesn’t bother me as much. It’s nice, very nice but strange. I remember when I first moved back home and slowly I was able to walk a little further with reduced pain. The first time I walked 1 mile, then 2, then slowly up to 4 miles. I was so proud and happy. I tried to run. I could only do it in spurts but I felt free. Recently I’ve been able to walk inside the house (even though my side of the house has hard wood floors which used to be the most painful of all surfaces- well besides rocky or uneven surfaces), without house slippers on to absorb some of the pain. I’m not sure if it will come back later since I had suffered for over five years but I don’t concern myself with that right now, I already have other things to worry about at this time. (This is where the meditation part is supposed to come in). ūüôā But back to my blood work… so another order was put in today and I went to the lab to draw blood. After I did that, I walked to the end of the 2nd floor parking lot and looked over the balcony, I scanned the scenery in the background. Green lush trees, in some areas tall green grass, some huge weeds yet still green and might look like plants to someone who didn’t know better, the mountains, even though cloudy because of the rain that has been coming and going. I took a deep breath and thought about how beautiful everything still was in the outside world where I rarely venture except to go to doctor appointments. And only recently have I been able to drive again, freedom once more. It felt good. A sense of peace passed through me. I saw someone that needed help and tried to assist them though I was weak and am still having problems breathing sometimes. I could have left them thinking it wasn’t my problem and knowing she had a phone but I had to stop. Although I tried to help (they had help coming but I insisted we could at least try to see if it was their car battery or transmission) and found out it was their battery, which we had no luck with. They were so grateful and asked if they could give me a hug. I’m not really a huggy type of person and have my personal space issues but they were so sweet and sincere, a hug sounded good, and it was a beautiful day.

Mia got a wonderful bath & mini hair trim today and she’s sleeping on the couch right now all cozy-looking waiting for me to go to bed. I took her to the dog park the other day and talked my sister into coming with us to the dog park, so she and my two nephews (4 and 9 years old) came to run around the dog park with Mia. I was finally able to walk and run just a little which was nice since I hadn’t been able to even stand for a while when I had bronchitis and then pneumonia. So there’s always good things in life when you look for it and don’t just concentrate on all of the negatives. It’s a big lesson for me that I’m still learning and sometimes have to make greater efforts on some days than others but at least now I’m more aware and know how to shift my emotions back to a positive path. I hope to take her to the dog park tomorrow and to the one pet store on the island that will let you take your dog inside with you. Actually at this time I think it’s the only pet store. I know that one closed at some point since the last time I was there about a year ago. I remember when I got home from the hospital, she was soooo happy to see me. I was so sad because I missed her so much and my mom said that it seemed like she wasn’t eating, or at least not eating as much as usual. I hoped she didn’t think that I abandoned her. But after I got home and we said our hellos and I gave her some treats in exchange for her showing me her tricks, she started eating and drinking water so all was well.

As far as my health, I’m just trying to do what I’m supposed to except honestly it’s very difficult to stay within the 64 oz. of liquid a day, especially because I need to count liquid in food and it’s so hard to look up every single thing so sometimes I just want to eat dry stuff like soda crackers (which has no nutritional value at all). I love to juice and make my own smoothies but now I can’t, I have to make decisions. Do I really want a smoothie and only be able to drink 32-48 oz. of water or Powerade (now that I was advised by my Rheumatologist that I can’t drink my Vitamin Water Zero with Stevia but need to drink something with electrolytes (sodium)? Do I really want soup or do I want water? How many grapes, pineapples, or other fruits can I have and still have enough liquid to last me the day, especially since I have to take so much medication? My doctors can’t give me a definitive answer as to how much I can drink if I “exercise” and sweat or if it’s an especially hot day. I mean I don’t want to pass out from dehydration because I’m being all strict about my water intake. So sometimes I have a bad attitude and if I go over my liquid restriction, I’m like, “whatever” and then just drink more than I’m supposed to because I was depriving myself all day. Yes, I know, I will try harder. I keep thinking I figured out why I can’t do it, will change whatever that factor is the following day, and then still end up going over. Today was a very hot day and I overexerted myself at least twice and it was so hot today but like I said, I have no idea how much more water can I drink at times like that? Maybe I’ll see if I can find the answer in research. I’m getting a little tired of researching though because sometimes the answers cannot be found. I’m thinking about finding a good Lupus message board and joining it. Sometimes I think it’s better to just read what other people have asked in the past or post your own questions where others who have gone through the same thing can give you some answers that they found or tell you what happened to them. I had joined a couple message boards over a decade ago but at this time I believe that one is completely down (or they at least only send out newsletters which you have to download and I don’t download anything) and the other one I have forgotten the name of it.

Fun Night with the Girls from Work

Better days. Our bowling “team” for work. It was a fun night.

Fun Hair

Since I was going to be out of work for a little while I decided to cut my hair shorter and color 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.


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). ūüôā¬† 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.