“How Do You Feel Today?”

Almost everyday I am asked the same tiring question, “How do you feel today?” My mind starts spinning and every pain, the exhaustion that healthy people cannot relate to, the fear, and every sensation, comes to the forefront of my mind. I begin to feel everything at once and at times it is overwhelming. It’s a list of symptoms I do not want to spew out. Some of which I was able to temporarily “forget” as I immerse myself in my daily tasks (especially at work). The answer I am sure is more than the questioner bargained for. My answer? A simple: “Better,” “Good,” or “Fine.” Depending on who it is, sometimes I will just name off the most pronounced symptom of the day but leave the rest unsaid. I’ve had a couple of friends tell me that I can tell them everything, they do not mind. Although I am extremely grateful for their offer that touches me deeply, I do not want to impose on them and perhaps give them more than they expected.

Several weeks ago I met a woman who has Lupus and Kidney Nephritis. She is currently undergoing dialysis and I believe is on a list to get a new kidney. We only had about 15 minutes together as my family was on our way to meet for an early Mother’s Day dinner. It was awesome to finally meet her as we had been emailing each other for a couple of weeks. Although we made plans to meet before, those plans got cancelled due to “Lupus.” Most of the time she was the one who cancelled and apologized profusely for it. “Don’t worry about it. I understand.” I tried to make her feel better. I am usually the one that cancels plans due to Lupus so it was a change to be on the other side. It was nice to be able to understand and tell her that it was okay, we could always meet on another day.

C was feeling good that day and said she gathered a bunch of art supplies that she wasn’t using and was very excited to give to me. She hoped that I would love it and asked if she could drop it off. I was at my sister’s house that day. My sister was the one that wanted me to talk to C. She hoped that it would somehow benefit me to meet someone else that had the same health issues that I did. My sister asked C, “How are you feeling?” C began to tell her how tired she was, that she was going through dialysis several times a week, taking care of her children, and named off a few more symptoms she was going through. My sister listened intently, asking more questions to gain a better understanding of C’s answers.

My mind took me back thirteen years ago when I was experiencing my first major flare. My sister seemed to believe that everything was in my head. She would ask me how I felt but when I told her, she would scold me. She met a “doctor” who told her that it was my fault that I had Lupus. She told me I should get a second opinion. I told her I already did (she really wasn’t involved in my appointments or procedures/ tests). I can’t recall anymore everything that she said to me but I stopped talking to her about my health. It saddened me that my own family doubted me (and she wasn’t the only one). As she was listening to C, I wondered if she finally “got it.” That it wasn’t all in my mind but that there were other people that felt like I did. Another thing that I liked about talking to C was that when she told me what she was feeling, I understood what she was talking about. She didn’t have to explain herself. I wondered if my symptoms were “validated” in my sister’s mind now that someone else she knew told her the same things that I did.

Although I do not like to talk about how I feel to people that won’t understand, I felt like I could talk to C if I wanted to. Which brings me to the main point for this post. (Ah, finally!) 🙂 I have a question for all of you fellow Lupies and others that have an autoimmune disease, or any other chronic disease: “How do you feel today?” If you choose to answer, you can list off as many symptoms and feelings that you want. I promise, I can handle it. 🙂 And it doesn’t have to be limited to just how you feel today, you can respond with everything that you go through due to your “disease.”

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.

Yep

This whole work week was crazy busy. With two providers out all of a sudden, needing to call to cancel & reschedule patients, on top of doing daily work, checking people in and out, taking phone calls, and just having to do damage control as the majority of people we needed to reschedule were angry. Some people still showed up for their appointments because either they did not listen to their voicemail or didn’t get a voicemail for some reason (voicemail not set up, no voicemail, or an invalid phone number). I’m also in charge of our Corporate Accounts which is a big deal for us and that was one of the most difficult situations to deal with because we want to keep their business but at least two wanted to speak to upper management. I was glad that they asked to speak to my manager because we were able to come up with a back up plan which the two representatives seemed to find acceptable. However it does not take away from the fact that we failed to meet their expectations. It’s better for someone to voice their displeasure so that we can find a solution than for them to remain silent and not renew their contract.

The Provider most of these people needed to see had to serve on jury duty for an estimated 1 1/2 weeks and unfortunately she cannot be cloned. So if she’s out, then unfortunately, there is no one to take her place. Jury duty is not an option however everyone was so angry and who did they take it out on and who had to deal with it? Me. A few days this week I had to work alone, management thought it shouldn’t be a problem as our department had 0-3 providers in the office depending on the day. Sure, if all I needed to do was check people in and out, I can handle being alone. But when I’m doing that for our department and other departments on our floor, plus taking phone calls (which we had many due to the cancellations of appointments), answering multiple emails, trying to reschedule all of the cancelled appointments, and all the other paperwork & things I need to do, I was stressed!

Where's My Pony?

By Friday (yesterday), I was dragging. I just wanted to lay down on the cold, dirty floor and fall asleep. The majority of the time, I have difficulty falling asleep but yesterday it wouldn’t have been a problem. We also had a meeting that I wasn’t aware of and when they passed out the agenda, I saw my name on it where I needed to speak about one of our Corporate Accounts. I wasn’t sure what they specifically wanted me to talk about nor the extent of the information they wanted me to divulge. I hesitated at first and then apologized for not having anything prepared. Before I could say anything else, my direct manager started to talk about the issues we were going through in the past week. After she was done, I added more now that I knew exactly what they wanted me to talk about. But it didn’t make sense why one account was mentioned but not all the others. It doesn’t even matter anymore. Our top boss (I don’t know her title) was at the meeting as well. I felt really dumb and hope that she doesn’t think that I don’t know anything about the Corporate Accounts (this is my favorite part of my job and I want to keep doing it, especially if it expands and another position needs to be opened). I also became really paranoid and then stressed out about losing my job. I don’t even know why my mind went there. I’m so glad that it is Saturday and I can take a break from the chaos.

I had at least 2-3 people make comments on my appearance. One guy told me I had put on weight but I looked better because I was too thin before. Then I had someone really irritate me (I was probably more irritated because I was trying to get as much done as quickly as possible and because of the type of week that I had). I’ll call her Nancy. Nancy will come in 1-2 hours before her doctor is even in the clinic to try to “catch him” before he gets into his office. In the meantime she likes to sit and talk to me because she thinks I’m not doing anything “important” because I’m not helping a physical human being. But I really don’t have time to listen to her talk about the same thing for one hour or more. And the story that she tells me never changed from the last five times or more that she’s told me her feelings on this particular subject. It’s something that can be said in five minutes but she goes around, and around, and around (like I am- ha ha) and either restating it in other words or just using the same words. She doesn’t care. At first I did talk to her but after a while there is just no time for that. Not even time for the guy that likes to tell us stupid jokes (the same jokes) that he made up and he’ll hang around forever unless someone needs our help. I fake laugh but it’s so much effort to do that. And he’ll laugh as well for a long time as he stares at me (or us if there is someone next to me). It’s very uncomfortable. Anyway, back to Nancy. She came over to our counter and told me that when I had passed her, she didn’t recognize me because I had cut my hair and “boy did you beef up!” She just kept going on and on about it. “Wow! Your face really went… (she cupped both of her hands on her cheeks and made a “pfffffff” sound, filling her cheeks with air so that it would appear larger, and moving her hands in opposite directions to indicate that I just got really huge). She couldn’t stop laughing about it. I guess it amused her. I kept typing out the email that I needed to send off as soon as possible and all I would say after every two comments or so was, “Mmhuh” (without opening my mouth) and, “Yep” (more like, “YePuh”)- with an emphasis on the P. She eventually went away, still laughing.

Nancy reminded me that people judge outward appearances (especially weight gain or the infamous “Prednisone Moon Face”) without knowing anything. People usually keep their comments to themselves, which is the polite thing to do. She’s assuming that I just started eating everything in sight. Being laughed at because I “beefed up” after everything that I’ve been through and still not being “in the clear,” really pissed me off. It also didn’t help that my co-worker told me the other day that when I gave her a ride home after work, her husband told her that he didn’t recognize me at first and thought I was a guy. Yep. I’m a man now. And not a “beefcake.” Just a chunky monkey. I recalled a memory of the first time I was having a huge Lupus flare and was put on a high dosage of Prednisone for a long time. Back then I had gained even more weight. I had a celebration (I don’t want to get into the details) that was supposed to be a special day for me. Two of our guests came up to me (I didn’t know them well- they were my friend’s aunties). “Wow, you really got fat, yeah?” They knew that I had Lupus so I told them that I had been really sick and was getting better but was still on Prednisone. “I know,” I said sadly, “It’s because of the medicine that I have to take.” They both started to laugh hysterically, “Yeah, right!” I walked away as they were still laughing and grabbed the first friend that I could find. I found Lei. I asked her if she would come with me to the parking lot, away from everyone so I could smoke a cigarette. I held back the tears until we weren’t surrounded by anyone else. I don’t know why I was so sensitive about it that night.

Visit With My Rheumatologist and Update

Last Thursday, I went to see my Rheumy and my “numbers” from my lab work are getting better. I still have my “normal” stuff happening daily but I can handle that more than what I just went through. I just can’t handle everything being amplified plus more pain, exhaustion, brain fog, difficulty breathing, and “fighting” Pneumonia for about a month all at the same time. He said I could lower my Prednisone dosage again. So the plan is to go down to 15 mg for 2 weeks and then down to 10 mg until I see him again five weeks after that. I’m very happy about getting weaned off of Prednisone. I can’t wait for all of this to be a distant memory. I don’t want to get too excited yet since I know how all of this could change in an instant. Yet I fervently hope that soon this episode of my life will be over. I don’t want to be on “survival mode” anymore, I want to start being in “living mode.” The last thing my Rheumatologist said to me before I left was, “Our next goal will be to get you looking more like this,” he pointed to my employee badge that I forgot to take off during my lunch break/ appointment. I absolutely agreed with him.

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I started that post almost a week ago. Since my last post and return to work, all I could manage was to get through my work day. There was no energy for anything else. Lately I also have been trying to “remember to breathe” when I get in a negative situation that I don’t want to be a part of. I’m one of those “high stress” people. I hate the way anxiety feels so much that I will go out of my way to avoid any type of conflict or confrontation. It’s very uncomfortable and I will remain angry and stressed out all day and even after work. Nowadays I try to just shake it off. Today was a horrid work day (worse than yesterday) and I couldn’t shake off anything until after work. Luckily I was finally able to just let it go, even though it took a while. I understand that once something is in the past, it’s in the past. There’s nothing I can do at this point in time to change the outcome of any past event. And all I have control over are my feelings. I need to re-remind myself about this frequently.

In the past few days I have been feeling a lot better than usual but still have my bad days. The pain from the nerve damage in my feet started to come back yesterday. I joined a gym because they had a corporate discount for us and only went twice so far (Monday and yesterday). I’m starting off slow but was happy when I realized that I could actually complete my goals for the cardio workouts (stationary bike and treadmill). For a long time I had more difficulty breathing, could barely walk from one room to another without feeling dizzy or needing to catch my breath.  When I did try to walk “further” on my “better” days, I was out of breath within 30 feet or less and had to walk slower or stop to sit down.

I am embarrassed to say that I am extremely self-conscious about my weight gain (especially because it includes a lot of retained water and a “moon face.” I was hoping that by the time I returned to work, I would look more like myself. When I look in the mirror, I feel like I am looking at someone else. And that I am “trapped” somewhere in this body. I have weight issues as well that started when I was in my teens. Right now I would rather “hide in my cave” than have to join the outside world again. I wasn’t exactly ready to return to work but when I found out that I had exceeded my FMLA hours for the year, I had to go back because I need my job. I was given an incorrect FMLA total because when I calculated my return to work date, I left two weeks of FMLA just in case I got sick any time before November (when I need to renew my FMLA) and also wanted to make sure that my job was secured despite my absences that started in December. My depression (which comes and goes) is getting better now that I’ve returned to work. Even though my job can stress me out sometimes because there is never enough time to finish everything that I need to do (and I am very efficient), I love the people that I directly work with. I usually like to only hang out with me, myself, and I (for various reasons) but I guess there is a part of me that needs to be social sometimes. All the employees in our department have a good sense of humor and can take my jokes and don’t get offended by off the wall comments that I make. 🙂

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.