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.

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What the…???!!!

It seems like it was about two weeks ago that my Rheumatologist was trying to get in touch with me and we were playing phone tag for days. It was about lab results so I was curious as to what was so urgent that he was calling me about labs now? But it was nice to think that any doctor would take the time to go over his patients labs with them after the initial visit. It ended up that he was reading my labs results that my Nephrologist ordered. He will always send a report to my PCP and Rheumatologist. So my Rheumatologist received those reports I had just gone over the previous week with my Nephrologist. The labs showed that the protein being filtered through my kidneys had greatly reduced and my kidney function went down a little. This is after restarting Plaquenil 200 mg/ twice a day, another 1,500 mg (full dosage 3,000 mg) of CellCept and Prednisone 60 mg and taper down 10 mg every two weeks until I get to 10 mg and I would see him again on February 4th I believe. He initially said he had just placed labs and to do them today. It was to measure protein and kidney function again but when he realized these labs were just done a week ago he told me to totally disregard the labs. Not even do it before our next visit, he hasn’t ordered anything more than the labs he ran on me the day I first saw him in November. The reason I mention these things is because he wanted to base his decision about changing my treatment plan due to labs looking a little better overall that was done a month apart and I don’t see him again until February. So at the time there were still about 1-2 times that I could do it and I bet it would go up and down just like my Nephrologist said. Since we were looking at reports from my Nephrologist- let’s call him Bob, I asked my Rheumatologist if he received Bob’s message about who was going to set up the Infusion because if no one was doing it he would set it up for me. My Rheumatologist sounded confused and asked, “But your labs are better. Why would you still want to go through the chemotherapy.” He proceeded to tell me that we could continue with the CellCept (you know- the one that “failed”), and throw another medication in the loop. Oh the perks! I said I was still considering it because when I went over these labs with Bob, he said that he would still go with the chemotherapy because my labs go up and down all the time from month to month. I asked him in a couple different ways if I should continue on this course since we seen an improvement and monitor the progress or results and make changes as needed or if he would still strongly suggest the Cytoxan. Bob asked me on that visit why the long wait? And asked me what my issues with Cytoxan was. I said there were a number of things but what I realized is that if I have the possibility for my kidneys and maybe even my Lupus to go into remission then I have to take it. It’s been a long time and I know it can be even longer. Even if my kidneys only go into remission for a couple of years or less, that’s still better than the protein destroying my kidneys on an almost daily basis. I didn’t want to waste any more time. I just wanted to do it already. I felt like I had the luxury to process a lot of what chemotherapy entails to me. I am not one to deal with anything negative. I would rather suppress it. But I knew I needed to process this one the right way or I might end up feeling like I’m going to have a breakdown later when I’m going through it. So my Rheumatologist said he would write a message to Bob and tell him the course of treatment he thinks I should do. So until I actually see him again on 2/4, I will not know what I’m doing. And if it is Bob that needs to talk to me about that then I have to wait until around 2/16. It makes the baby issue more unsettling to me. I mean sure I don’t want to go through Chemotherapy. Nobody does. But when I have three doctors telling me that they agree, the benefits outweigh the risks including getting cancer (which runs in my family). So it upset me that we had this in depth conversation about it and he kept acting as if it was so dire and I had to do this or it would be a shame to be on dialysis at 50 years old. And then the use of Prednisone among other things in one month makes him think they will continue to get better? I had no protein in my urine for the first time I knew of since 2001 just a few months ago and my kidney function was down but that’s still a good deal. Then the next time I saw him within maybe 3-4 months, my protein was high again and still bad kidney function. If there is a way that doctors can stop saying the worst things and are so quick to prescribe chemotherapy and then when there’s a slight improvement there’s all of a sudden another option that was clearly not an option before. I was crying everyday even if I shed a few tears as a thought crossed my mind or I remembered something for over a month. And what? Was it just not as serious as he made it sound? You can’t just throw these kinds of things at people as their only option unless they are sure! It’s not fun and games. I was referred to an Oncologist  when I lived in Las Vegas,  my doctor said it was because, “I think you might have cancer.” And with family history of all types of cancer run in my mom’s side of the family our generation has been lucky so far- knock on wood.

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I did so bad on the Prednisone this time. I started at 60mg and my PCP brought me down an extra 10 mg early because I was having problems breathing, I never really got to lose all the weight or hardly any of it since I got off Prednisone over a year ago. I don’t have any more room to “grow.” My face: cheeks, chin, eyes, look swollen. Next Wednesday I can go down to 20 mg. I’m still on 30 mg now. I was soooo grouchy, emotional, I started to have the crazy vivid dreams again. I wonder if it’s the CellCept? I felt like I was having possible issues with that med too. They make me feel horrible and there are so many of them.

I am falling asleep over here. I will proofread later; I know that’s a little backwards but I haven’t written in a while. Take care everyone and have a Happy (upcoming) New Year. 🙂

Kidney Function at the Point of the Next Step… Plus Talk Story Time

This “flare” has already lasted for over 3 years. I wondered how much longer this would last- forever. “It wasn’t like this the first time,” I thought. Not only is Lupus experienced differently by each of us, it is possible for us to experience it on different levels. Even though I knew that there was no cure for either Lupus or Glomerulonephritis, I think a part of me hoped mine would not be so bad, that it would get better, or I would be pleasantly surprised that miracles do exist. I remember not being able to wrap my head around the fact that I had a disease that I would need to see Specialists for but they could no longer cure me or make me better. All they could do was attempt to slow down the progression of the disease. I realized my mentality had always been, if you are sick you go to the doctor and they make you feel better. But that changed along with my diagnoses.

It has been three years since my kidney function has significantly diminished and my new Rheumatologist put it in the terms “CellCept has failed.” The consensus is that they want me to undergo low dosage chemotherapy (Cytoxan infusion) with Prednisone. In the meantime I am back on “full meds” which I mean all additional kidney meds I had from the beginning: 3,000 mg of CellCept a day instead of 1,500 mg, started off on 60 mg of Prednisone on 11/18/2016. I felt like it was suffocating me. My PCP let me go down an extra 10 mg which I was grateful for. And also Bactrim (3 times per week). We are doing this until the beginning of February 2017 when I see my Rheumy again. He wanted me to think about it and also consult an OBGYN doctor about early onset menopause and the possibility (or not) of freezing eggs for later.

I really did not want to do this. When my Nephrologist mentioned Cytoxan again back in November, he turned around to look at me and said, “You aren’t fond of Cytoxan?” I thought that was the most asinine way to put it. Who is? Fond? Is that really the word that he was looking for? I am fond of a puppy. Not fond of having every cell in my body killed and having to give up what I consider to be too much to have to give up. People mourn in stages so I never know if I will change my mind from one moment to the next. And it is not as much about “mourning” for losses that I feel I have or will incur, but I believe it is more about unexpected changes.

The moment I made up my mind was when my Rheumy said, “The CellCept has failed and I don’t want to see you on Dialysis when you are 50.” That made me stop and think. 50? Wow! What happened to all the years? Granted, I’m 42 years old so closer to 40 years old than 50 years old! But my birthday is next month and 50 years old would be in another 7 years. That is not that far away. I also know that is not necessarily true. I have seen my lab work and how it dove, dialysis could happen sooner than 7 years and I need to do whatever I can to live a decent life.

In the meantime being at work full time & taking all of these meds is kicking my butt. I was falling asleep by Friday and was useless this entire weekend. My Potassium is high so I need to avoid high Potassium foods and try to reduce it. The last lab result was 5.9. I retest between 12/2- 12/27. My body feels as though it is totally exhausted from working out. But there has been no work out. J The smallest things seem heavy and take up so much of my energy. More than ever I now know what it feels like when your skin hurts. I also have to get an x-ray of my left knee due to more frequent pain, mostly inflammation that lasts for about a week and makes it extremely painful or impossible to walk. My PCP wants to do an x-ray first to check if it is Arthritis.

In the good moments, I’m making gemstone jewelry and still teaching Mia new tricks. Among other mini adventures. I was thinking about making a vlog. I want to do what I can to raise awareness for Lupus. I have always done something but I want to do even more. I think people are more engaged with visuals- I am and I think it’s more enjoyable. I like those photos online, “The Faces of Lupus” I think they are called. Eventually I wanted to maybe make a video of my story of Lupus and everything associated with it (I haven’t thought of all the details yet) but it can be a short video. If it was something that others would like to join me in, of course provided that I can make something semi interesting to watch, or actually more so because I really do not like to be in front of any cameras especially not video cameras and I’m self conscious especially now but why not do it  now before I forget what I felt like even before the chemo? And I don’t mean to sound vain with everything I mentioned. It is more what others have said to me or at me the last time around with Prednisone. And I’m more concerned about making it awesome because I want people to watch because that is what will bring awareness and hopefully an idea of my experience with this medication for anyone seeking for it. And then if I can get others to join me, I would like to eventually have them all available all in one easy to find place. The website idea is just way too much info and I have to remember some things are only interesting to me. 🙂 Lol. But it will interest someone. I believe this would be another way and opportunity to give a face to Lupus.

I want to try different editing options if possible (any easy to use video editing programs you know about) and practice so I will be better by February. Then I can maybe record as much of the process of this type of chemo as I can and as I am allowed. But if I can’t show it at least I can explain that part. I have and had so many more questions that randomly pop up every day since I found out. I wanted to know the experience and results of others with the same disease and the same type of treatment I was being presented with, just to get a better feel for what I may be up against. The reason for all of that is because it was difficult finding information or the “more information” that I wanted. I searched for videos and found several different people. But I still wanted more videos. 🙂 None really told me what I wanted to know. Actually there was one good one who had a bunch of video vlogs but this was a young lady that went through chemo for cancer so I know her treatment, including dosage and frequency was probably longer and higher than mine will be. And therefore the effects would probably be harsher on her. She was funny and positive throughout. I loved her outlook. I don’t know it off hand but if anyone is interested I will look for 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.

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.

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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. 🙂

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. 🙂

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.  🙂

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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!

“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.”

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