My Boyfriend

I ran into my Pulmonologist in the hospital last week as I was leaving a friend’s room. She just had a baby girl. I was surprised to see him and didn’t know that he came to the hospital to see patients.

“Hey, how are you doing?” he asked as we began to walk together. We both said we were doing well. Oh, the title. I have no romantic interest in this doctor, I’m just silly and sometimes call people by a different name or title. Somehow he got the name/title “my boyfriend.” I don’t call him that, of course.

image

I see him for my sleep apnea. I still don’t know how I ended up with sleep apnea. I don’t even snore. I can’t use my humidifier (I have a full face mask since February of this year). Sometimes my nose gets stuffed/ inflamed and I need to breathe out of my mouth so I can’t use the nose pillows. I’ve been so tired for years that if all I have to do is wear a silly mask while I sleep, I will. And I really don’t like the sensation of waking from sleep and feeling like I’m struggling to take a breath. At first I was surprised that I didn’t feel claustrophobic when I wore it. But lately with the miserable humidity, I can’t use the humidifier or the mask. The humidifier blows warm air in thorough the mask so I haven’t been using it. Just paying a “co-pay” for that and my machine monthly. But not being able to use the mask in two days really concerned me. He told me a quick story about how a patient mentioned how he would put ice & water in the humidifier. Instead of just water. That was an awesome idea & I couldn’t believe it never occurred to me to try it. It feels much cooler, doesn’t keep me up at night, and I can breathe and not feel like I’m only breathing in really hot air.  More

Ad Nauseum

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

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

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

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

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

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

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

A Hodgepodge of Life Lately

Last Thursday I went to my follow up appointment with my Nephrologist. I was excited and scared at the same time. I was hoping that my labs were still looking good and that I could continue to wean off of Prednisone (I’m down to 10 mg/ day now) and hopefully stop taking some of the other medication. Half of my co-workers in my department are sick and I’m worried about catching what they have and possibly going through another round of hospital visits.

He handed me my most recent labs and as I looked at it in disappointment (my kidney function was a little bit worse and the protein in my urine was a little higher) he told me that everything looked good and was “stable.” I tried to reassure myself that my labs would get better again and that maybe the change wasn’t as significant as I thought it was. He also said I could stop taking Sodium Chloride unless my Sodium level went down again. This, he said would help reduce my edema and I could add salt to my diet instead. I liked that idea much better than taking pills. At the end of the appointment he told me that he would see me again in three months. “So I still have to take CellCept?” I asked. He explained the process and that I would probably be on it for another two years. He then said that if I wanted to, I could reduce it a little. Instead of 3000 mg/ day, I could take 2000 mg/ day. I happily accepted this especially since it’s an Immunosuppressant drug and I work in a clinic surrounded by sick people.

In the past 2 1/2 weeks I have been picking up a co-worker to bring her to work because her car is in the shop again. It’s difficult for me to wake up earlier to pick her up on the work days that I usually sleep in a little longer. The days that I start earlier than her, she will have her husband or someone else drop her off at work and then she’ll ask me to wait for her to get off (which is usually another 45 minutes). She’ll usually wait until the end of my work day to tell me, after I’m already tired and looking forward to going home. Hardly anyone knows about this but the few that do are getting upset at me because it’s been so long that I’ve been giving her a ride and they’re upset that I cannot tell her that I’m not going to do it anymore or ask her for gas money. I let her borrow my car while I was on my Leave of Absence from work for a little over a week, maybe two weeks and she didn’t fill up my car with gas, not even fill up what she used. I’ve had to fill up my gas tank twice already.

I am exhausted yet happy that I didn’t sleep my weekend away like I usually do. After another hectic work week, I was able to attend my nephew’s football game and ran some errands with my mom, and then today I was able to go to the movies. We went to see “Maleficent” in 3D and enjoyed it along with my favorite “movie popcorn.” After the movies, my mom said she needed to go to help her Aunty pack for a vacation so I sat outside on a bench, trying to stretch out my back that has been killing me. It feels like I need someone to crack it for me but no one will do it except for one person at work. But I don’t want to bother her about it every day. Today I didn’t feel well because of at least three different things and told my mom that I was tired. She said, “Well maybe you shouldn’t have started to take less CellCept then.” I got really irritated because what did that have to do with anything? I asked her, “Do you even know what CellCept does?” She asked, “What?” I didn’t even want to answer that question, especially since she already “knew” or else she wouldn’t have made such a statement, right?  She then said, “It’s a Cancer medication?” I said, “No. I think you’re thinking about Cytoxan, which is a Chemotherapy drug.” I was over with the conversation as soon as it started. My own mother still didn’t understand anything about Lupus or my medication after all these years. She’s always jumping on my back about every single thing that I do or don’t do yet she doesn’t even know what I should or shouldn’t do. I will forever be “tired” or “exhausted” so why even mention it? Especially when this is the type of responses I get, including, “You’re always tired.” If anything, CellCept has caused people to experience more fatigue.

I’m excited about this coming work week. We have Wednesday off (King Kamehameha Day) and Friday is payday along with the upcoming weekend.  🙂

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I just got off the phone with a good friend who I could tell had been drinking. In general, I despise speaking to drunk people. My father was an alcoholic and a “drunk caller.” It was really difficult to deal with him throughout the years with all of his bitterness, anger (mostly at my mom for divorcing him because of his drinking), and him repeating himself over and over again. When I was still in high school, there came a time where his anger turned towards me and I couldn’t handle it anymore. I finally had enough and hung up on him. It was something that I had wanted to do on many occasions but just couldn’t for some reason. After this episode, I wrote a short story called “The Man We Loved.” But I did still love him, I just couldn’t deal with it anymore. I gave him another chance which he again ended up ruining and I didn’t talk to him for about ten years. I had never seen an alcoholic as bad as he was until I met S. Again, I love S but at times I cannot talk to her. I finally told her a month ago that I can only talk to her when she’s sober.

She just called me and I silently listened to her tell me the same story over and over again. I tried not to get angry or to be abrupt about it. I wondered if she would give me a chance to talk as most of the time she doesn’t when she has been drinking and everything that comes out of her mouth is so angry. It sucks the life right out of me. After 30 minutes or so, she asked me how my doctor appointment went. “Well,” I said, “He took me off of the Sodium pills and told me to add salt to my food instead…” That’s when she interrupted me. Telling me that I cannot have French fries (who was talking about French fries?), I should be eating stuff like Kale, am I f—k’n kidding her that my doctor told me to eat salt, that he doesn’t know what he’s talking about… She started to talk about a diet that she wants to impose on her mom, that I should grow my own food and have a garden, etc. I tried to stay silent again, listening to her tell me what I should and shouldn’t be eating as I started to get more and more upset. She said that my doctor is an idiot. She asked me what have my doctors told me to do about my diet. I was silent for a while because sometimes when she asks questions, she will jump in as soon as I begin to talk and then it’s her turn for about 20 minutes again saying the same things over and over again. She asked me again so I told her in an upset tone that they have told me to limit my liquids to 64 oz. a day and that I can add salt to my diet unless I’m feeling “low-sodium” again. She asked if I was upset at her, and not to be upset with her. I told her I would stop if she would stop telling me what I should be doing. She agreed and then started going off about my doctor and the salt again! I told her I had to take a shower and we both said bye. Maybe I should really go and take a shower. Sorry for venting. I’m over talking to family and friends about anything that has to do with my Lupus or doctors appointments. It’s not worth it.

I want one of these!

I want one of these!

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.

Atrial Fibrillation Part II

I had my appointment today with my Cardiologist to go over the holter monitor I had to wear for two weeks and about the irregular heart beat that was picked up (Atrial Fibrillation). He explained everything to me and advised me to speak to my PCP about this so that my PCP can give me a referral (to be seen in the department I work in), probably put me on Warfarin, and have me follow up with the referral within a week or less. I was lucky enough that a spot was available tomorrow. I just wanted to get everything started before I have to go back to work next week Friday. I’m not ready however according to the Benefits Specialist who has our documented FMLA hours used replied to my email letting me know that as of May 2nd (when I return to work), I will not have FMLA anymore. I sent him another email just to re-confirm that but instead of asking for that, I asked him if I would be at zero or if I was already in the negative. I really don’t know how this happened since he gave me my FMLA unused balance over the phone before I submitted my TDI forms. When looking at my calculations, I thought I was safe to say that I had two weeks saved up that I would need to last me until mid November when I would need to get the FMLA re-certified.

I’m really not that thrilled about Coumadin, especially at my age. I don’t need to take a medication that is very important to manage as you don’t want your blood to clot nor do you want it to be too thin (especially if you fall and get a gash and start bleeding out). I remember reading someone else’s blog that also has an AFib and on Coumadin medication. If you have this, could you please tell me more about your story. Is it going to make my Lupus worse? Did you notice any more or worsening symptoms after you started the medication? Did you experience any crazy, notable, or merely something you had never experienced before while on Coumadin? I have done some research on it after I received the initial call from my Cardiologist’s nurse but most of it is “textbook” and because I have Lupus, I now know better than to listen to only what the textbook says. Especially since Lupus manifests itself differently in every individual at different levels. And sometimes the textbooks do not mention everything you may experience and Lupus is never predictable anyway.

I liken Lupus to a hurricane. It comes full force at you, devastating every thing that stands in It’s way (any organ, tissue, one’s nervous system, joints), anything and everything it so whimsically chooses. And since everything that I have mentioned are a part of “me,” and possibly “you,” we are essentially under a vicious attack at times. After the first round getting my Lupus and Membranous Glomerulonephritis under control, I was doing much better in comparison to what I had at that time come to terms with as my newly defined “life.” I was eventually told by my Rheumatologist and Nephrologist that I was in remission yet I still had to take a few medications (nothing heavy duty) and all of the symptoms of the disease didn’t go away. However looking back, it was good to still be able to go to work and not have to call in, not needing FMLA for years, and it was no longer necessary at that time to take any of those extra prescriptions that made me feel like I had a “pharmacy” in my kitchen cabinet. Many times back when I was going through my first major Lupus flare, I often wondered if the side effects from the medication was even worth taking it. The pills were supposed to basically slow down the progression of a disease that had no cure and also had the potential to lead to more diseases that have no cure. The Prednisone was the worst for me and as I lie there in bed back then, I just wanted to hurl those pills into the trash. My quality of life was nothing, I felt like I was dying inside, not only physically but mentally and spiritually. I felt like “the living dead.” But finally the hurricane “passed through” and my Lupus ended up retreating for quite a while, I naively believed that I was in the clear forever and just had to deal with different pains (ranging from “tolerable” to “severely cruel and intolerable”), to nausea, exhaustion, etc. It’s crazy how sometimes it takes me a while to name all of the different symptoms I have due to Lupus since I’ve lived with it for so long now. I don’t remember life without all of these restrictions and limitations. After being weaned off all the medication except for the few, it felt like the hurricane was finally over. I was able to do more than I could in months. But just like a hurricane, I have found that it was the eye of the hurricane I was living in while I was in remission. As soon as the eye had passed, the worst part of the storm was quickly approaching to destroy more than it previously did.

I’m not sure if I’ve said this before but I really don’t like people to ask me how I’m doing. I have gotten tired of saying, “Ok,” “better than usual,” “Eh,” “better in some ways, worse in others,” etc. I am through trying to explain to everyone what it’s like to have Lupus and exactly how I am feeling that day. Who wants to hear a “list of complaints” anyway? Isn’t that what it seems to come down to if you have never experienced anything other than good health, maybe bronchitis or a severe cold at some point in your life? Today a handful of people asked me how I was doing, I tried to avoid as many people as I could. My nurse at the Cardiologist’s office knows me and asked me how I felt. Can you believe that she asked me that same question about five times? So I had to find five different answers, or I guess I could’ve used the same one as she was not listening to my very brief answers. It was very irritating at the very least. I’m not excited at all, more so a little afraid and disappointed that I have to start Coumadin. Sometimes I want to get a Girl Scout sash and make illness, procedures, and surgery badges. Mines would almost be full by now. A useless and morbid thought, yet if I get one more diagnosis I am going to scream. Someone asked me the other day if I had Diabetes and my answer was, “Not yet.”

Another beautiful sunrise.

Another beautiful sunrise.

Prednisone

Let me just say that I HATE Prednisone. I know that some do not like that word. Hate. “You don’t really ‘hate’ *such & such* a thing.” Yes I do. From the bottom of my heart. I like to try to be positive & perhaps tomorrow will be a better day since I finally fell asleep sometime after 5 am this morning & woke up at 3 pm with my mom scolding me again as if I’m a child. As she also did last night. We both seem to be getting on each other’s last nerve lately & the Prednisone doesn’t help. I’m normally moody & impatient anyway. Something I don’t like to admit and try to hide under silence or a smile while internalizing all of my feelings. However with feeling as crappy as I do, I sometimes lash out or have brief episodes of “Tourette’s.” It is embarrassing afterwards but I get in this “zone” where I don’t really know what’s going on or what’s coming out of my mouth until it’s over. I am not so proud that I won’t apologize if I was wrong or even if I don’t feel like I was wrong I will sometimes apologize if I hurt someone’s feelings. Especially if that person is my mom who is always there for me and who I have probably worn out by now with my health condition(s) over the past four months. But by that time it’s too late. Apologies can only go so far and doesn’t make everything better. So then comes the guilt and depression. Along with everything else I must worry about, it is all too much for me at times. Surprise! It’s easier for me to just “forget” and not think about it. At least it makes everything easier for the moment. I tell myself I won’t do it again and what do you know? It happens again.

I first was introduced to Prednisone back in 2001 when I was officially diagnosed with Lupus and Membranous Glomerulonephritis. I was seeing a handful of doctors and it felt like a full time job. I was doing that along with all kinds of tests & procedures, going to the university full time, and working full time, sometimes overtime to make up for the money that my “significant other” was gambling away faster than I was making it. I was uncomfortable aside from the constant pain that never settled in a single place in my body, horrendous headaches from hell that would not go away even with the two medications that my Neurologist prescribed (Frova worked some of the time, maybe 20% of the time) but my insurance didn’t cover it and I couldn’t afford to pay over $300 for a monthly prescription so my Neurologist would give me samples and continued to prescribe me Maxalt. I don’t even know why I kept refilling it as it didn’t help at all. It was apparent that he was not going to try to give me anything else to try and had “run out of ideas?” So I guess I was just taking what I could get in the hopes that it would someday magically work. The Prednisone made me so much more exhausted than I already was on a daily basis, I was getting so big that I couldn’t fit in my clothes anymore which made me depressed, my face became huge and round (I would say it was like a dinosaur’s head), my appearance really changed and bothered me a lot, I was very depressed, scared because I didn’t know what was going on with my health, just that I had two diseases “all of a sudden” which had no cure, and it didn’t help that I didn’t have a lot of emotional support by my family and friends. They didn’t understand any of it. They could see that my physical appearance had changed but other than that, I acted “normal,” I could still go to school and work at that time, I didn’t “look” sick, just altered by medication… But I was never one to complain about every single thing that I felt or was going through. Especially when I would share and they still didn’t understand and used it against me or accused me of making things up, or “conveniently” being “tired” to get out of going out for an all day event in the sun, or that I had a low pain tolerance if I needed pain medication and was in pain every day. Why talk about it anymore? Everyday was the same as the last, just with slight variations. So if someone asked how I was doing, I was “good.” I was “fine.” It was simpler and still is. Prednisone made me grouchy but maybe I was mostly just exhausted and physically and emotionally taxed. I was in a bad relationship and under a lot of stress in every aspect of my life. Needless to say I was very unhappy. At least this time I don’t have all of those stress factors in my life (just new ones). 🙂 The good thing is that I moved home a couple of years ago. It would’ve been so hard to go through all of this completely alone if I was still in Colorado. It made me sad that my good friends stopped calling, coming by to visit, and stopped asking me to go out. I understand that sometimes I had to cancel plans and tried to explain with an apology because I was taught to keep my word, if I said I would do something or made a plan or obligation, I should always keep it. I disappointed myself when I could not do this anymore. So I stopped making plans to avoid feeling bad. I told them to please continue to invite me because if I felt okay, I would definitely want to hang out. But it didn’t work out that way. I wasn’t fun to be around anymore or cancelled one too many times. So I shut myself off from everyone and just did my own thing, except I was in that relationship where I would get yelled at every single day for hours. The same old thing repeated in different ways over and over again like a broken record. Once I finally yelled to shut up! That was a few days after my gall bladder surgery. I then got hit with a pillow in the stomach. After my kidney biopsy when I was trying to open the bedroom door to escape another cornered “battle” where I just got yelled at over and over again, I was kicked right where I had my biopsy and fell to the floor. “Don’t be so dramatic!” he said. As soon as I could get up, I reached for the door and got out of there. “It was an accident,” he said about both incidences. Hmmm. Accident. Most of the time I kept my mouth shut because I have a “smart” mouth but confrontation and unnecessary arguments I do not like and do not have time for. Especially when I’m “sick.” Once I was finally off of the Prednisone, I started to lose weight. I was so happy when I could finally see my facial features again instead of one big dinosaur head, I slowly could fit in all of my old clothes and then they eventually became baggy, I started to feel my head clear up, and I felt so much better. I told myself, “Never again.” And I declined Prednisone up until January of this year.

Butterfly

I love flowers and butterflies. They are my symbols for peace & happiness. Kind of ironic, huh?


A few years after being diagnosed, I was officially in “remission.” At first I thought that meant that the disease was dormant/ inactive and would not affect me. I guess it wasn’t as bad as when my kidneys were acting up and the Lupus was active but I did still have the pain, the headaches had gone away, I was only on a few medications and no longer felt like a “pharmacy,” but was still tired all the time. But after going through everything that I did, I would opt for remission. It made me kind of sad when the people at the pharmacy started to call me by name and knew who I was. I ended up with two Morton Neuromas (nerve damage), one in each foot (just so that the other foot wouldn’t feel left out I guess). I’ll talk about that on a later date. Various joints would hurt at different times, the winter months or when the weather changed seemed like the worst as far as pain, I would get this pain in my shoulder that was so bad that sometimes I couldn’t even move my arm (I still don’t know what that is), and various other things that I cannot recall off the top of my head as they all became my “norm.”

I don’t know what happened but after we got home from my sister’s birthday get together on December 13th, I was laying on my bed playing games on my phone to pass the time as I was too tired to do anything else. All of a sudden it felt like my throat was closing up and I was having trouble breathing. So I sat up. I could breathe a little better but was still having problems. I knew that any time someone has trouble breathing, they should go to the ER but I could still breathe, why waste my time and money to go to the ER for nothing? But what if I should go in? What if I don’t go and I stop breathing in the middle of the night? I didn’t want to wake up my mom so I was debating whether or not drive myself to the ER. After an hour of debating, I was too tired to drive and decided to go to sleep. In the meantime I had text my mom just in case I drove myself and wasn’t home by the time she woke up, she would know where I was. She was mad at me the next day for not waking her up and since I was still having issues breathing, she brought me in to Urgent Care (which I knew they were going to send me to the ER per protocol). The ER doctor did some blood work, a chest x-ray, EKG, etc. An Echo Cardiogram (I think, I can never tell the difference between the EKG and Echo or if those are the same tests or what) was ordered but a technician wouldn’t be in until Monday (it was Saturday). The ER doctor came in after he received all of my results. He asked me at what point was I told that I had Congestive Heart Failure. I looked at him surprised because I did not know. He told me it was in my charts. I thought back to when I was first diagnosed and living in Las Vegas but could not think of any time that someone told me that I had CHF. So I found out that day that I had CHF, my kidney function had rapidly declined in a fairly short amount of time and was closer to dialysis than to anything else (which my kidneys had always been my biggest fear), there was fluid in my lungs, my blood pressure was sky high, and I had bad edema in my legs because my kidneys weren’t doing it’s job. I called it the “Bizarre Love Triangle,” knowing they were all connected somehow and somehow I needed to make something stop to halt the damage that all three things were doing to my body. He wanted to admit me to the hospital until at least Monday for the ECHO and go from there. Actually I didn’t know how bad my kidneys were doing until a week and a half later when I established care with a Nephrologist. I’m glad I didn’t know in the hospital because everything else made my world turn upside down and inside out. I had really hoped that since I was living a more positive life, was doing so well in many aspects of my life, and was taking all of my medication again like I was supposed to even though I was in “remission,” I didn’t know what I had done wrong or where it all went wrong.

Since then it’s been crazy. I had to get another spinal tap the last time I was in the hospital last month which I was so scared of because of my first awful experience when it took forever, hurt, I could feel nerves being pinched in my thighs, it was painful, uncomfortable, and afterwards spinal fluid was leaking for days and I had the most horrid headaches that I had never experienced before in my life and never want to experience again. This time it was better. Quick and not painful (as I don’t mind needles anyway). My medication is hard to keep track of and I still don’t know them all by name. I’ve been in the hospital three times in the last four months (twice because my sodium dropped so low), found out I still have edema but it’s manifesting itself on the inside of my body that’s why it seems like I’m not retaining water because you can’t see it in my ankles and legs anymore. I get bad headaches that last for days, all of my “normal” symptoms are way worse than usual that I can’t even work so I’m on leave right now but have to get better by May 1st and go back to work on the 2nd. I was hoping I’d be better by then but I don’t know. I had to wear a holter monitor for 2 weeks per my new Cardiologist to “record” any irregularities I noticed during that time. I got to do a CT scan of my brain again (how fun, being claustrophobic), but they had music, Valium, and an eye mask so I was good. And he let me keep them. I got bossed around by a nurse that was younger than me, almost was given another patient’s meds as a frantic nurse was looking in the wrong person’s chart and luckily I caught it because she mentioned that the hospitalist wanted to give me Motrin which I knew could not possibly be correct because of my kidneys, my arms looked like I was a drug addict that loved needles, and all kinds of fun stuff. Of course most of the tests show nothing. They’re always like that. I got used to the doctors giving me shrugs, saying, “I don’t know,” or “It’s just the Lupus.” I didn’t like that there were no answers as I had always thought doctors always had the answers. It was and is frustrating to say the least. One thing that made me angry was that I was having edema for a while. The first time was back in March of last year. And to my surprise, it stayed there for days so I was able to show my new Rheumatologist. He pressed on it which left a big indentation that ever so slowly regained it’s huge shape. I had done that a lot, played with it like silly putty. “See this,” he asked as he pressed down on my leg. Yep, I’m not blind, I already know it does that. (I was thinking this, I wouldn’t say it out loud). 🙂 “You’re retaining water.” Okay. And I guess that was that. So I thought it wasn’t a big deal since he just blew it off and was more concerned about me being a cigarette smoker than anything else. The edema would come and go every so often, always lasting between 1-3 days. Then it started to get really bad in December, and the headaches started (it was so bad that I would need to call in sick for work and I never call in sick). The edema got so bad that you couldn’t see any of the bones in my boney feet, I had no ankles (just cankles), it went all the way up my thighs. It was really bad but I thought it wasn’t a big deal. Until one day one of the nurses I worked with said that I looked pale lately and she had seen my legs (I showed her), and she said that my face was bloated too. So I went to my doctor who immediately ordered blood work and stuff that the Rheumatologist should have done. My blood work jumps around so much that I can be fine one day and the next day something else is wrong. I am now officially anemic and my red blood cells and hematocrit has been low lately. My doctor was thinking about doing a blood transfusion but my Nephrologist wanted to hold off on it. He prescribed me some Iron last Thursday when I saw him. “Finally, I thought. I’ve been asking for something, anything that could possibly give me the least amount of energy or tell me what to do to get energy. I’m not sure if the Zinc will work but it’s worth a try.

The most important thing that I do right now is the hardest thing for me to do. I’m under liquid restriction for what I believe is for the rest of my life. 64 oz. I’m used to drinking 3-4 times as much as that. I am still failing miserably daily but I am drinking less than I used to, however I know that’s not good enough. My Nephrologist told me that when I was in the hospital this last time, I had enough water in me to last me six days. So I have to try harder until I finally get it and know how to ration my liquid throughout the day. My blood pressure in the meantime is still high but better. A couple of times it hit the normal range which made me happy. 200/114 is not good at all. I never had problems with my bp before.

I had one of the biggest scares of my life in December when I landed myself in the hospital for several days, sleeping most of the time because of the headache that wouldn’t go away, and the Nephrologist wanted to put me on Prednisone and that was the only option, I had to do it. He assured me that a small pill wouldn’t make me “fat,” that it’s the person eating, not the pill. Well I beg to differ because I’m not eating any more than I usually do and even though at least 10 lbs. is water weight, I have still gained weight and my face is huge. It’s not a dinosaur head this time, it’s a “Muppet Head.” Yea, I cut my hair super short at the wrong time because my head became bigger, like a Muppet. 🙂 I don’t know why saying those things make me smile or makes me feel better. I think a part of me would rather say that to someone that I haven’t seen in a long time than for them to think it or even say that I gained weight or that my face looks swollen. As if I didn’t take notice. My Rheumatologist said I could start taking 20 mg a day instead of 30 mg of Prednisone but I still don’t see a difference. I asked my Nephrologist when did he think I could start taking less Prednisone and also start reducing the CellCept and some of the other meds. He said we would discuss that later, he wants me to do a few tests first and see me in a month. A month seems too far away. I want to be able to reduce my medication sooner. He had at one time discussed Cytoxan with me (in case the CellCept/ Prednisone/ and other meds didn’t work) but he hasn’t mentioned it again so I’m crossing my fingers.

I know there are others out there with Lupus who are taking Prednisone. What is experience with it? How do you feel about it?

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.