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.

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.

It’s Been Forever… and a Day

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12 October 2016

It is now December 13, 2016. Time flies by quicker every year. One thing I have always known but understand on a different level now is that with Lupus things never stay the same. It is always changing. Even if it’s just the pain changing types and pain levels or moving from one part of the body one day and then be something different the next.

I am more forgetful than usual and there are too many things that I want to do but do not have the time, energy, or resources. Time and energy are two great resources. And not feeling sick often.

I will have to see where I left off to see what type of update I need to make and then for the new things. Lately I’ve had a few epiphanies. I really must write these things down as I’m thinking about things.

 

I’m having a terrible time on Prednisone this time around. Im not sure if the severe pain (cramping?) in my legs and feet are from the Prednisone or a combination of restarting that on November 19th along with the full dosage (3,000 mg of CellCept). This is to carry me over to February 3rd when I see my Rheumatologist again.

I will have to elaborate on these things more soon. I want to say tomorrow but I don’t want to not have the time. I’m really going to shoot for at least 3 blogs a week if not more. There is also a project I want to start working on really soon and will share that as well.

I have just restarted making jewelry in the past month or so for my business. I just had to stop for a while when I was sick all the time. The biggest thing other than my daily pain that was always there was my debilitating fatigue. I have spoken to all of my doctors and specialists & because of all of my conditions and not being able to give me just anything especially if it could affect the heart, my next option is to call Apria Healthcare (Boo! Hiss!) and have them take my CPAP Machine  to test it and make sure that it’s working properly. And if not then adjust it. In the meantime, I had spoken to my PCP about possibly getting B 12 shots if he thought that might help. I need to double check on the dosage but I’ve been taking the shots once every two weeks (so twice a month) & it did take a little longer than anticipated for it to work for me but it seems to have helped a little. However being on so many medications especially the Prednisone lately is kicking my butt. I just got an inhaler because I’ve been having trouble breathing, I’m uncomfortable in so many ways, of course the moon face. And I am sooo grouchy! I try my best to keep it to myself. So far so good, I think. 🙂

And my PCP moved out of state. I was devastated. I’ll have to dedicate a post to him. The good news is I found a female doctor at the clinic that I work at. She’s an Internal Medicine doctor and I really respect her. She will make time for me on the same day even if I might have to wait. But I don’t care. When I saw one of my first Rheumatologists at 27 years old, it was always a 2 hour wait AFTER my appointment time that I saw him. But it was the way that it was. Little did I know  that I could have looked for another Rheumatologist. Maybe it did cross my mind but was “too much effort… to little reward.” Just not worth the time, new referral, and wait to possibly be in the same situation or worse elsewhere. Strange how I don’t even remember all of their names anymore yet there were quite a few. Especially Rheumatologists.

Oh did I already say I finally have a new Rheumatologist and I like him? He’s very smart, answers questions, I was impressed with the most complete blood panel I have ever seen. As far as Lupus, Sjogrëns, my kidney function, the C Complements, and some things I have never heard of.

I guess a lot has been going on. I have stayed out of the hospital for over a year. 🙂 But I did have two ER visits in October.

June 6 of this year marked a full year of me not smoking another cigarette. I do get afraid sometimes because it feels like it would be so easy to slip and to just go back and have a difficult time quitting again. So I really have to stay away. It was definitely something that was hard for me to do but was and has been very rewarding.

I have until February to decide on a plan my Nephrologist wanted my Rheumatologist to talk to me about. Cytoxan infusion with Prednisone (Why?!). I have already spoken to an OBGYN who my new Rheumy referred me to talk to me about what I need to think about from their standpoint. The main topics was do I want to have kids and possible options prior to treatment and early menopause. (I really don’t remember signing up for this).

I need to try to sleep through this leg pain because my schedule changed to where almost everyday is an early day. I was never known to be an early riser and if I don’t set at least five alarms I fear that I’ll sleep through it or turn it all off in my sleep. Because I won’t remember any of it later.

Skateboarding!

I forget that I really should act my age. I am too old to be doing certain things but I have been telling myself that since I was probably 30 so I know I won’t and do not want to change. I have way too much fun and get to laugh at myself. And if I didn’t still laugh sometimes I think I would be in trouble. So never stop laughing. Do whatever you need to do to put yourself in that “happy place,” in the present moment. Some people like to watch funny movies, comedies, laugh with friends or various other activities. That’s one thing I need to remember especially when I am on leave from work and at home.

Okay, I will write more soon and I intend to make this a habit. I really enjoyed blogging and it did help me and I met other wonderful Bloggers through their writing and the kindness they showed, or their honesty, and being alone but not amongst all of you who understand what living with Lupus is like. I have been thinking about that a lot too. A lot about a wide variety of subjects and what is most important in Life. Or what is not important.

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. 🙂

Ultrasound

So I went to my ultrasound appointment today and my nurse called me about an hour later to say that the results were normal. Although relieved I was disappointed that we still haven’t found out what’s wrong with me. I made a follow up appointment to see my primary doctor on Friday. The ultrasound was painful as the tech pressed down everywhere that I have been hurting.

One of my best friends has been texting me lately and has been suggesting things that I can try. At this point I feel like it wouldn’t hurt to try anything. She suggested a few supplements and now to be gluten free for at least 3 days. She told me to research gluten and gut inflammation. I recently found an article that had a direct link to this supplement that is supposed to address the five problem points of Fibromyalgia. The reviews that I have read are good so far and because it addresses chronic fatigue and pain I figured it can’t hurt to try it. I ordered a free two week sample and if I don’t cancel, they will send me a bottle a month. I just had to pay shipping/ handling for the trial. It took me a while to decide to buy it but I have nothing to lose and everything to gain. Like my life back. My friend is on a vacation right now so when she gets back she wanted a list of my meds and is going to try to help me. It means a lot to me. I miss her a lot and haven’t seen her in a long time. But anytime we talk, it’s like we were never apart. She helped me to decide on purchasing the product I mentioned. She asked me what it contained so I sent her the website address and she said that all of the supplements were good. I’ll talk to my doctor about it on Friday about it. I’m assuming it works because the lady who is on the website has Fibromyalgia and her husband helped make this possible for her. I know I can’t believe everything that I read and am always doubtful but it can’t hurt unless my doctor tells me otherwise. I would rather take the supplement than all the medications that I feel are poisoning my body. If it works then maybe I can get off of almost everything. That would be awesome. It has a 100% one year money back guarantee so why not?

Well it’s time for me to tackle last years tax paperwork. I found out if I don’t do them by the last day of the year then I lose my tax credit. The sad thing is that I have an accountant, I just haven’t been really good about keeping paperwork, statements, and receipts for my business in order and need to find as much as I can. I also closed two bank accounts earlier this year so I should have ordered them earlier this month but that didn’t happen. I don’t like to stress out and end up procrastinating sometimes which makes it worse when I finally start the task.

Lupus and I

It’s been a long time since I’ve blogged. I’ve been on another leave of absence since mid September. I was at work one morning and didn’t feel well. I was extremely hot so I turned on my little fan at work. This was first thing in the morning. One of the nurses that I work with kept asking if I was okay. Most times when anyone asks me how I feel, no matter how bad it is, I will say, “okay.” It’s easier than listing everything that doesn’t feel right, especially when everyday is basically the same thing. I’m sure they really don’t want to hear it and I get tired of talking or even thinking about it. It’s also difficult for me to explain. I figured it would pass and it wasn’t a big deal. She finally convinced me to come with her to check my vitals. My pulse and blood pressure were high. She ended up calling my doctor over from next door and he ordered an EKG and stat labs. On the way down to the lab (after the EKG), my doctor caught up to us and said, “I know how you feel about the ER but I suggest you go there instead of the lab. There are changes in your EKG that are worrisome.”‘ I ended up getting admitted again (the 4th time in 9 months). This time it was a little bit different since it had to do with my heart. Something I never thought I had to worry much about. My Potassium was super low which is very dangerous and the changes in my EKG. My Cardiologist wanted me to be admitted until we could do a treadmill test (I can’t remember what it was called). I was released after that (the next day) and my doctor wanted me to stay out for a few months. I still am not sure what made it so serious that I had to stay out. Yet I was grateful because during this time, among other things, I had trouble breathing, strange heart beats, and now pain in my stomach and lower intestines (or at least that area) and a lot of throwing up. The pain and nausea started about 1 1/2- 2 months ago. On the 23rd, I had an Endoscopy. Everything looked fine. I was a little disappointed. Not because I want yet another thing to be wrong with me, I just wanted it to be fixed. On the 31st I have an Ultrasound scheduled. My liver enzymes more than doubled on my last blood test so my doctor wants to just make sure everything is okay. He said that he believes the test will come back fine.

During my last visit with my Rheumatologist, I explained in detail how the fatigue affects my life. For over 13 years I have told  my doctors and specialists about how I’m so tired but they have never done anything about it. Only saying, “It’s the Lupus.” I’m tired of being dismissed with that. His master plan was to rule out sleep apnea and wanted to see me again after that. It took about 5 months to see the sleep specialist only to find out it was a consultation. The good thing was the actual test was about a week later. My follow up appointment to go over the results will be in the second week of January. A total of 7 months. I know I’ve been living with this for a long time but sometimes it’s worse and I’m just over the fatigue already. I’m over a lot of things.

When I went through a major flare the first time around, I thought I knew what Lupus was all about and how cruel and unpredictable it is. Now I feel like that time was a walk in the park. I always thought that kidney failure was what I needed to worry about. Now I have to worry about my heart. And now that it feels like I get diagnosed with something new or have new problems every couple of months, I am beyond frustrated and at times afraid. I know that I’m not weak yet I feel like I can’t deal with this anymore. I tell myself that other people have it worse and that I should be grateful, strong, and deal with it. I am frustrated because I wonder if we’ll ever figure out what’s wrong with my “stomach.” I wonder how long this flare will last; what other organs my Lupus will affect. I thought I would be better way before December. It’s been over a year. I don’t remember how long my flare lasted the first time around but I also wasn’t hearing bad news out of the blue when it doesn’t feel like anything is very different than it usually is. Several people have told me recently that I look good. Better. I’m not sure if this is supposed to make me happy. All I know is that I wish that the outside was a mirror of what is happening on the inside. I’m polite though and say, “thank you.”

I haven’t been hungry for a long time and rarely eat. Most times I forget to do so. I’ve never been a fan of food as I’m very picky. In the last week I’ve been trying to eat at least once a day. However I still haven’t lost much of the weight I gained from the Prednisone. Except maybe the “moon face.”

I didn’t know that I had Fibromyalgia too. I figured that Lupus was very similar to Fibromyalgia anyway but my PCP told me on our last visit that I have both. Everything has also affected my emotions/ mood. I’m sure you guys know what I’m talking about. I know I mentioned it, but I don’t feel like talking about it right now. Sometimes I think it’s so crazy how autoimmune diseases are invisible but wreak so much havoc on one’s body. Not only do we have to live and deal with all of this but because no one else can see it, it’s easy for them to not believe you, think everything is okay because you “look better” or don’t “look sick.” I feel like the only time I’m believed is when someone else in the medical profession sees the extensive list of medication that I am on and my health issues. It’s like adding insult to injury when someone who has no idea says something ignorant and hurtful.

I was trying to work more on my business, hoping that maybe if I did well enough, that I wouldn’t have to go back to work. I love my job but sometimes feel that being able to create my own hours would be best for me at this time.  But sometimes I can’t manage to do anything at all. I know that no matter what, I need to go back to work on my scheduled date on January 18th. If not, I’m afraid that I will lose my job. I think that I worry too much about everything. I would be very disappointed if I have to cut down my hours (which would entail applying for a new position), hopefully in the same company, if they give it to me despite my health issues this past year.

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