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. 🙂 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). 🙂 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.

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