Nunya

snapseedI have been disturbed for the past week regarding something that a co-worker said to me and also upset at myself for even engaging in the conversation and telling her my business to “prove her wrong.” Or more so to prove to her that I was doing everything in my power to make myself better.  I had said that one time in front of a few co-workers  and she said, “No you’re not.”  Who does that? This person is a co-worker. She knows minimal. She used to know more when I thought we were friends but that was years ago. Any time I have been out of work for a Medical Leave she and no one else texts, calls, or even act as if they care if I am still alive or not. It hurt at first years ago when I seriously thought I didn’t have much longer to live with all of my new health issues and hospitalizations. It was all new to me. Now I know it’s like the “new normal” yet with Lupus things never quite stay the same. I haven’t had a hospitalization for over a year now  (knock on wood). This is a big deal (to stay out of the ER and hospital). It’s been only about 3 months since I have been to the ER.

One day I was joking around (like I usually do) and I told (let’s call her Tuna) that I should work part time and focus on my business for my other “part time” job. (And  if you have your own business you know that it’s never a part-time or full-time job. It’s an all the time job). Tuna told me that would be a great idea.  I didn’t really expect a response since I always say silly or off-the-wall things that are impossibilities. She said that it would be better for me and my stress level. I was wondering what stress was she referring to?  I told her I couldn’t work part time  because if I ever got sick I would get fired because if I worked part time, I would never be eligible for FMLA.  I have made quite a few changes in my life. One being that I’m trying to be more compliant with all of my medication all of the time,  trying to eat healthier foods (although  it is difficult when I am such a picky eater and don’t like many things)- yet I’m trying,  I cut down my soda consumption to 0 to 2 cans a day,  I rarely drink juice anymore (The soda and the juice reduction is because of sugar). My co-workers keep hounding me about my sugar intake which are my daily drinks. I also drink a helluva lotta water,  I have been less stressed than usual and anything that might be bothering me I guess is mostly about being sick all the time.  Something that Tuna would not know anything about and I won’t be mean so I’ll stop there.

She then asked me  what happened to the disability thing? I wasn’t sure what she was talking about and  it took me a while to figure out that she was referring to the fact that they (my co-workers)  at one time wanted me to apply for disability and not work anymore. I think I mentioned parts of it in this blog before. I didn’t feel right about applying for disability because I feel like I am still capable of working. Sure I get sick easily when people want to come to work sick and cough on top of me and not warn me that they are sick or stay away from me knowing I’m on three medications that suppress my immune system.  In fact I’m sick right now.  Of course if I felt like I was still capable of working several years ago when it was very difficult for me then I certainly can work right now. I haven’t been in the hospital for over year. Sure my kidneys are not doing so well but it did better on the prednisone and the full dosage of CellCept.  And it is still better than it was. So we will see in February what these doctors have decided for me now.

So I told Tuna that I don’t think I would qualify for disability and that I feel like I can work and I don’t want to apply. She said that they were worried that I was going to get sick again because of the stress and I was still wondering what stress? But I didn’t want to ask, these conversations aren’t fun.  I thought, “Wow, why  don’t you start helping me one leg at a time into a coffin?”  Here I am suffering every day  in a different way but keep a smile on my face and I feel like I’m doing better and this person tells me that I need to stop working.  So I told her that I have everything covered and that I have the tools to help myself. And sarcastically she said, “What your medication?” That’s when I started to tell her too much because I felt like I had to defend myself. And that made me angrier because I told her things that I haven’t told anybody and she’s the last person I’d want to know these things that I have not even told my best friends yet. She had the gall to say that I still eat like crap. What the hell does she know about my life? From now on I’m putting all of my things in the refrigerator downstairs.  So I explained to her what I’ve been eating, which I put thought into and it is actually better than a lot of other things that even if they eat. She told me she didn’t realize that that’s what I’ve been eating. Really?!  I told her I’ve been seeing a therapist.  That is what I don’t want anyone to know.  And it’s none of anyone’s business. And I know that I cannot tell my coworkers anything about my life because they use it all against me. They told me that I got “sick” because I was stressed out because of this short term boyfriend and that stress was the reason I was hospitalized and my kidneys failed and everything. B.S. I also told her that I haven’t been stressing out like I used to. And that I realize that I’m only one person and can only do what I can do and I will never be able to finish everything in a day on certain days. And that is OK because I prioritize things. I ended up walking away,  having already said too much, feeling unwanted, feeling so judged and misunderstood…  never has she asked me, “how are you feeling?”  She doesn’t care but she has a lot to say on the subject now doesn’t she? I didn’t know that my health was so much a part of their business. I understand that they don’t want me to be out all the time but they have to understand that this is my life and I am making my own decisions. I’ve never judged her life or told her what she should and should not do.  I have never made assumptions about her life and then told her my thoughts and judgments on it.  I really cannot care less about her life or anyone else’s. I’m too busy living my own.  However I do care a lot when someone has the audacity to judge me on zero information or maybe old information.  And I’m not sure why they do it? And per the FMLA law, my job is protected as long as I stay within the  parameters of the law and my body doesn’t decide to go haywire too much.  It almost makes me wonder if FMLA protects me from people like this saying stupid stuff to me about not working anymore and applying for disability.  Not that I would say anything because I don’t want more problems.

I’m still not sure exactly why this is still bothering me about a week after it happened.  I did learn one thing, next time someone who doesn’t care starts telling me stuff like this, I will just walk away. I don’t care if it seems rude because they were rude in the first place to bring up my life and their ignorant and misinformed opinions on it.

I Tell You What

First of all, I’m hoping that 2016 will be a better year for all of us, not only for our health, but for every aspect of our lives, everything and anything that touches us. Resolutions are not for me, they are made to be broken. Like a bucket list before the term “bucket list” came out. I can make goals though. For now I’ll check in with myself at least once a month. I believe goals give us hope and something to strive for. Without hope we have nothing. And I know that sometimes I need the goals so I don’t forget to live and have hope while I’m going through whatever it is that is ravishing my life at the moment.

Bored Again

I saw the Ophthalmologist on December 30th. She said my Macula looked fine and she saw no signs of Macular Degeneration. I asked her how is it that someone thinks they see something and then there is nothing there? The best way for me to ask, “Wtf?” She said it could’ve been the high dosages of Prednisone I had been on. She agrees that I should still stay off of Plaquenil and even mentioned one Lupus medication that none of my specialists have brought up to me. They want to put me on Cytoxan before something that is milder? Well, I’m not going to worry my pretty little head about something that has not happened yet. 🙂 Apparently I just shouldn’t worry about anything anymore- it doesn’t make any sense. I stressed myself out over becoming permanently blind because of what one person said and then end up being told that was not true. Lupus is crazy too, so fickle, not making sense most of the time. Cray cray. 🙂

 

Annual Optometrist Appointment

I finally called my Optometrist in October to set up my yearly eye appointment. I always enjoy seeing her and her receptionist. So as usual I enjoyed my time there looking at new glasses (even though I was thinking about just buying contacts this year), we laughed & talked a lot. Especially when I had to wait for my eyes to dilate. After my Optometrist took the pictures of my retina, she pointed over at the slides and started telling me what everything meant. I was listening, sometimes half listening because I wanted to hurry back to work. After a while she pointed to one part of the retina that I was interested in knowing what it meant and after I heard “Macular Degeneration in your right eye.” My mind went blank, and then ran with this almost nightmarish thought, memories, my life and how I had hoped I was getting better and wouldn’t have to worry about another organ being affected by the Lupus… “I think you have Lupus, here is the medication, it can cause irreversible eye damage.” But it was a low percent. I was just here a year ago and everything was okay. She mentioned the Plaquenil and how “they” (my various doctors) would probably take me off of it. “But then what am I supposed to take now?” I thought.

I realized that when I was simply told that the medication could cause eye damage, I forgot to research exactly what that meant as I was still researching Lupus and Membranous Glomerulonephritis; and then everything that came after that. How stupid I was! How could I have dropped the ball? On the other hand, it was a small percentage of people this would happen to and what else were they going to give me? Back then, in 2001, it seemed like Plaquenil (Hydroxychloroquine) was the only option and what was used to treat SLE.

Two days later I had my Rheumatologist appointment scheduled. This Doctor doesn’t seem to care and does not have time to discuss things. I can’t wait until next year when I will have another option (I’m on #2 at this time since I moved to an island). I certainly was not thinking about my medical options when I really wanted to move home. But I’m glad to be here and my pain is not the same as it was while I lived in Colorado. I mentioned to my Rheumatologist what I was told and added that my Optometrist’s office called me after my appointment to let me know that they had set up an appointment with an Ophthalmologist for me- for an OCT scan, to see what the damage is. He took me off Plaquenil. I asked, “So what am I going to take now for my Lupus?” I was a little angry and wondering, if people live without Plaquenil when they are on Lupus, then why have I been taking this for almost 15 years? He said that I am on CellCept which will help and then threw around that word again that I dislike a lot, “Cytoxan.” I hope it never gets to that point. By the time I see the Ophthalmologist at the end of December, I will have waited over 2 months to find out what is going on. I researched what I could and of course, every case is different so I really don’t know what to expect. Just like with Lupus. If I do end up losing my vision, I just feel right now like I would be pissed that after everything else that Lupus has done to me or put my body and mind through, it just keeps taking and taking… and now it has to mess with my eyes?! I tell myself to “settle down” a lot because there is no use in getting stressed or worked up about something that I have absolutely zero control over. All I can do is see if anything is wrong, and if it’s that bad, see if anything can be done and do it, or if not, that has been my life with all of my medical conditions that have no cure. I’ll get up again and move along like I always do.

Other than that I spent some time in late August in the hospital. CHF was present, A-Fib, and my Lupus. And 6 hours in the ER in September for an A-Fib/ Lupus/ vomiting for hours episode. At least that was on a Sunday and I didn’t want to miss work the next day or deal with FMLA and benefits that mess up everything- they called me when I was in the hospital to ask me questions about my absence in order for them to approve it & wanted me to fax them a doctor’s note. I told her I would take care of it after I was discharged from the hospital (probably in a few days) and would ask the Hospitalist to write a note.

I am hoping to write more and “talk” about the Rolfer I found and how great but painful it was. It helped most of my back pain for a while, or at least took the edge off. I do like it better than going to the Chiropractor though. Have a great day or night.

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. 🙂

Pain from Morton’s Neuroma and Plantar Fasciitis= Good Times!

Colorado Pre-Surgery

Colorado Pre-Surgery. I love my crazy socks. Since it was a slow day I decided to pull up my pants and take a pic.

As you already know, the pain from my nerve damage is back! Because I had a “break” from it, I now realize how horrible it is and that I had become somewhat “accustomed” to it. Not only do I have this excruciating pain in my toes and balls of both feet, but I also have pain in my heels which I am assuming is Plantar Fasciitis (probably from the way I now walk because of the pain and not being able to bear my weight on certain places on my feet). I do not really care what it’s called, it just hurts! Lately I’ve been at a “9” on the pain scale (and I have a high pain tolerance). The reason I won’t give it a “10,” is because I’ve experienced pain on a whole new level numerous times since I’ve had Lupus and just when I think that pain could not be any worse, something else will prove me wrong. To think that pain can be any worse frightens me a lot!

Recap: I first experienced this very intense pain in my left foot somewhere around 2006. I just dealt with it because I had become used to going to different PCPs and Rheumatologists for answers to new symptoms and pain that began to introduce themselves into my life and was usually brushed off. Their answers were usually, “I don’t know,” or “It’s probably just the Lupus.” Really? That’s it? Not only did they not know and go on to the next subject but they wouldn’t even try to offer any allevement. It was a waste of my life and money so I would only go to my doctors for their follow up appointments or if something was exceedingly bad. I figured that there was nothing that could be done. I was referred to a Podiatrist who gave me a few options and not wanting to undergo surgery, I opted for the horrid cortisone shots. Not only was it the most painful shot I’ve ever had in my life but it didn’t work after the first shot! It was a “miracle” shot until a month later when the pain returned. The next two shots didn’t work at all so I just tried to deal with it as the only other option was surgery. Around 2008, I had the same type of pain in my right foot and it was worse than the first Morton’s Neuroma. I dealt with it, gritting my teeth and making tight fists as I dug my fingernails into my hands. I had heard that if another part of your body was in “pain,” then it would take away from other pain one may be feeling. (It didn’t help). I didn’t have to be on my feet to feel the pain, even if I was sitting in a chair, or just laying in bed, the pain was always there. Many nights as I laid in bed, I couldn’t remember how it felt to not have this pain. I wished that I could have just one night without pain and promised myself that I would cherish every second of it. When it became much more than I could bear, I went back to the Podiatrist, finally willing to have surgery on at least the right foot and eventually later I would do the same for the left. The surgical plan was to cut the nerve in my foot which would leave my foot numb. I was exchanging pain for numbness. Not the most favorable plan in my mind but I just wanted it to go away!

I waited until the following year to schedule the surgery due to work. They didn’t have anyone to cover my position while I was gone, so I waited until I just couldn’t stand it anymore and told my manager early in the year (late January) that I needed to schedule this surgery as soon as possible. She told me that she was using her vacation time in March and that I would have to wait until April to schedule it. I was pissed! I could not believe that she would make me wait another three months when she knew I had been dealing with this for so long! In April when it was time for surgery, I was extremely grateful that my mom came to help me for two weeks since I was living alone in Colorado. All of my friends who said they would be there to help didn’t visit or even call to see how I was doing except for one person who brought me flowers after I returned home from outpatient surgery.I really appreciated her thoughtfulness. I lived on the second floor of an apartment complex which made it difficult to go out to buy groceries or go to doctor appointments. I couldn’t drive (something I did not think about until after surgery) so my mom’s willingness to fly out to help meant so much to me. I didn’t even have to ask her, which I wouldn’t have because of the inconvenience and the price of airline tickets.

Chances of the surgery being a success was 90%. Pretty good, right? Well I fell under the other 10%. So not only is my right foot numb and tingly but it still hurts like hell! One morning within the first week after surgery, I woke up in so much pain that I broke down and cried. I have only cried twice from pain in my life (excluding when I was a child. I’m sure I must have cried then) and I was also way beyond frustrated. I couldn’t stand up and was on the ground. I had to use the bathroom but didn’t want to ask for help and refused my mom’s offer as I was determined to do this by myself. It was harder than I thought as I tried to drag my body on the floor towards the bathroom. Then when I got to the toilet, I could not get up. Finally I let my mom help me. I’m very stubborn and proud, I did not want to admit “defeat” or that I required assistance to do something so simple at the age of 35.

I had mentioned the pain in my feet to at least two different PCP’s, two different Rheumatologists, a Podiatrist, and an Orthopedist. Because no other options were mentioned or it took so long for new options to be introduced to me, I came to the conclusion that this was my lot in life. I thought that nothing could be done about it, “it is what it is,” and I would just have to deal with it. Now that the pain has returned after it miraculously disappeared for three months, I realize to live like this is absolutely asinine! Something needs to be done and I’m over it! I mentioned it to my nurse last Friday when she was in my department using our fax machine. She told me to send a message to my doctor. It was good that she was there and told me to email him or I wouldn’t have. She made me feel like this is a legit thing to discuss more in depth with him. She asked if I had heard of Gabapentin. I then remembered that I did. When I was still in Colorado, my PCP finally mentioned it (after years of telling her how bad the pain in my feet was). All she did was refer me to a Podiatrist and then an Orthopedist. When she mentioned Gabapentin, she wanted me to first try two other medications before talking more about it. I was angry that she failed to mention anything (even the other two meds) earlier. I was thinking, “Are you kidding me?” Because apparently there was something out there that could possibly help me and “only now” was she mentioning any of it. I tried the other two medications first like she suggested hoping that it would help but began to experience more pain. I left a message with her receptionist about it and she called me back to say that it was probably one of the new meds and told me which one to stop taking. I continued with the other but stopped that one on my own when it wasn’t working either. Somehow the option of Gabapentin had slipped my mind. It was probably because I was depressed and also stressed out at work and in my home life.

So on Friday I emailed my current PCP and asked him what he thought about Gabapentin. He emailed me back and told me to set up an appointment to see him to discuss the options of either Lyrica or Gabapentin. I tried to research both of them but was overwhelmed with the information, pros and cons, and side effects which I may or may not experience. I figured I would just speak to him as soon as I can get an appointment. I am looking forward to my next visit with him hoping that I can get some relief from at least the nerve pain. I’m also wondering if the pain I sometimes get in my left shoulder that lasts 3-5 days is some kind of nerve pain as well. So far none of my doctors have an answer for that one.

My PCP is leaving our clinic (it’s so convenient to be located on the same floor right next to his) and I really like him. He will still be practicing but will be on the other side of the island. If I was on the mainland, the drive would not be so bad, however on an island with one main road where one accident can majorly impact traffic on the whole island and just the way that traffic flows, it’s not an ideal drive (especially since I do not like to drive). However I am willing to drive to see him because he knows me, my condition(s), listens intently, answers my questions and if he doesn’t know the answer he will either consult other doctors or refer me to a specialist who may be able to help, and I am comfortable to tell him anything. I don’t want to take my chances with another doctor. I told him on our last visit that I wanted to keep him as my doctor if it was okay with him and not to scratch me off his list. He said that was fine, he wasn’t going to drop any patients that still wanted to see him, and that he learned a lot about Lupus from me. I told him he would be a pro soon enough. 🙂

“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.

Lupus and Love

I occasionally started to think about love and being in a relationship after my most recent Lupus flare emerged full force. I had a lot to think about and new ideas to get used to. I was being admitted into the hospital almost every month, my kidney function had plummeted, I began to experience extreme brain fog for the first time, was extremely forgetful, and thought that I was going crazy. I contemplated finding a therapist to talk to before I had a breakdown (which I thought awaited me in my near future). Every time the doctors found something else wrong with me and gave me a new diagnosis, I would just roll my eyes, so sick of yet one more thing to deal with. One of the worst parts for me was when I began to have difficulty doing the simple things: I would have to sit down and take more breaks (even if I had just gotten up out of bed, walked to the bathroom to brush my teeth, start putting on some make up, break; make my hair, get my clothes ready, break; get dressed.. you get the picture). My hands and legs would tremble or shake visibly and was worse than it had been over a decade ago when I was first on Prednisone as well as other medications. I was extremely frustrated with everything that I had to deal with on a daily basis (the pain, feeling sick and nauseous, the ridiculous amount of water retention, being uncomfortable, having difficulty breathing, the fatigue, etc.) By merely walking a few steps from one room to another was enough for me to need to sit down to catch my breath as my heart raced and I would lose my balance often. I felt like my capability to do certain things for myself was declining and was afraid that this was only the beginning of my new reality. Sometimes I needed help getting dressed, or getting in the shower so I wouldn’t fall, many days I couldn’t prepare a simple meal, and for over a month I could not drive. I have always prided myself in being independent and would rather do things on my own, no matter how hard it may be than to ask someone for help. I wouldn’t want to inconvenience anyone, but I also am stubborn about having to admit that I cannot do something for myself and admit that I need help. I was depressed for a while because I did not know what the future held for me and wasn’t sure if my declining memory and feelings of going crazy was temporary or if it was something that I would have to deal with for the rest of my life.

One thing that I had to come to terms with which was difficult was my desire to have a baby one day. It would have been preferable to do this years ago but I knew I still had at least a few more years before I would remove this option from my life. I always wanted a family of my own and have several children but after being diagnosed with Lupus, I would have been content with one. My mom always told me that I could not have a baby because she was worried about my kidneys and knew at least one person who had Lupus and the same kidney disease that I have and she had a couple of children which worsened her Lupus. But I’m hard headed sometimes and didn’t want to listen to her. I just wanted a baby one day. I felt like it was a life experience that I didn’t want to miss out on. I wanted to be able to raise my child, see him/her grow up, teach him/her, and everything else that came with having one’s own “mini me.” 🙂 I wanted to be there and be a source of encouragement in times of need, to praise/ congratulate after every accomplishment. I wanted to experience having grandchildren. It was a whole world that I never experienced before and did not want to miss out on. One of my first thoughts after my first hospital stay was, “Who is going to take care of Mia if I die?” I was incredibly sad. No one could take care of or love Mia like I do. She would think that I abandoned her. At no point did it ever come to mind that my kidney function might begin to fail or that Lupus would affect my body and life like it was so long after the last scare. I realized that with my life, there would never be any guarantees. Yes, I could make it through this rough time and go back into remission but there would be no promises that it wouldn’t return. In this case, how could I know this yet still choose to have a child if there was higher possibility that I would leave him/her motherless earlier than I should?

I was “happy” that I was no longer in a relationship. Although I did feel alone a lot and it would’ve been nice to have someone that loved me to be there and let me know that “everything would be okay.” Even if we didn’t know that for sure, it would have still been comforting. I felt like because I was “sick,” “imperfect,” and was limited in what I could and could not do on a daily or moment-by-moment basis, I would become a “burden” on anyone who chose to love me. I didn’t want someone to stay with me just because they felt that was the “honorable” thing to do yet silently resent me for it. I didn’t want to take their life away from them because they had to cater to me and how I felt that day. And even if I had found that “perfect person” who loved me immensely and wanted to be there for me, didn’t mind it at all, and who chose to stay every single day, how could I hold them back from living a full life? A part of me felt undeserving. I did not deserve to be loved. I also felt like it would be selfish to ask someone for such a thing. It touched me to hear about other people with Lupus who have significant others who do love them and choose to be with them despite it all. That Lupus and all that comes with it did not frighten them away. To make myself feel better, I think that being single makes my life easier because there isn’t a certain someone that I need to talk to every day no matter how bad I feel; I don’t have to feel guilty about not being able to go out again; and if I want or need to be alone I can do so without having to worry about hurting anyone’s feelings.

Often when I think of subjects that are undesirable to me, I just stop thinking. I’m a master at repression. These topics never fail to resurface though. One day I was wondering why do I feel this way? That love cannot exist in my life as long as Lupus does? Why do I feel like I don’t deserve love? Or that a person who could still love me wholly even though I had Lupus does not exist in this world? I stopped thinking again so haven’t figured that one out yet. However I have come to believe that it is possible to find such a person to love me. I know that right now is not the time and that I need to work on myself first and learn how to deal with my disease. Or maybe I just need to be more at ease with this disease.

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.

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