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.

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7 Comments (+add yours?)

  1. lupusreallysucks
    May 04, 2014 @ 05:15:30

    I could have written every word of this. It’s exactly how I feel.

    Reply

  2. Athena OfAthens
    May 09, 2014 @ 10:48:18

    I, too, made the “2014 IS GONNA BE A GREAT YEAR!!!” proclamation…So far, it’s been a let-down. I know I have used up all my “I am depressed” cards. I just don’t even bother talking to people, anymore. Nobody wants to hear it. I am thankful we can blog. Thank you for sharing.

    Reply

    • mkingr
      May 09, 2014 @ 11:35:58

      I too am thankful I can blog as I don’t like talking about my Lupus symptoms. I find that they don’t understand, it’s something I’d rather not talk about as it’s always the same thing but a different day, and who wants to listen to a long list of ailments? I don’t mind reading about other people’s ailments since I have an understanding about what they are talking about and makes me feel like I’m not alone. And we all need to “vent” somewhere to maintain our sanity. 🙂

      Reply

  3. dscherff2013
    May 11, 2014 @ 12:21:14

    Hi There. I really like your writing and I nominated you for the Liebster Award. I hope you continue to sharing your story, I look forward to reading more. 🙂

    Here is a link to the nomination (it is on my blog with all of the details), http://inthelupus.org/2014/05/11/liebsteraward/

    Donielle

    Reply

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