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.

Chronic Fatigue & Pain

There are a lot of different things we go through living with Lupus. Two of my more frequent “companions” are fatigue and different types of pain that travels through different parts of my body. Pain from debilitating headaches, various joint pains, nerve damage in both feet (which my previous Podiatrist adamantly insisted was NOT from Lupus), finger/ toe/ muscle cramps in all parts of my feet and legs, ferocious back pains, etc.

I don’t like to be asked questions about it or any other symptom I may be experiencing because it’s pretty much the same thing just a different day, I don’t want people to judge me or think that I’m complaining, or them trying to give me advice about what I SHOULD be doing (which is just their opinion & hasn’t helped yet), and don’t want to bore them to death. Sometimes I just wanted someone to listen, not try to “solve” my problems but it seems like they feel like it’s their duty to find a solution for me which my doctors haven’t figured out yet or maybe it’s just that they don’t know what to say. I would prefer just a hug.

I’ve tried to come up with the words to describe the pain and fatigue but have yet to find them to more accurately depict what I’m going through. Since coming across all of your blogs on WordPress, I have found something I really needed. To know that there are people who understand these symptoms in the context that only we can understand it as it all stems from Lupus. I understand that our experiences and degree of feeling any specific ailment is still different however it still means so much to me that people who understand are out there. In some posts that I have come across, I have found great definitions, analogies, and words to describe those things that I still cannot accurately put into words.

I was hoping that you could share the way that you describe the fatigue and pain and also any other symptoms that you experience. Any thoughts?

I wasn’t feeling the greatest today so canceled on my sister at first and in the morning had tried to explain to my mom how I felt. I finally decided to drag myself out of the house and see my sister since I can only see her on weekends and there’s no guarantee that I will feel any better next weekend. I found out from my sister that my mom thinks I’m having all of these pains and fatigue because of what she believes I’ve been eating lately. And plans to talk to me about it. Later after I left the house to drive to my sister’s, my mom was looking for me and text that she guessed that I left the house so I must be feeling better. What got to me was her tone. Lately it feels like everyday she is judging me or getting on my back about something. I can’t believe that even she is questioning how I feel and assuming that just because I was able to drive less than 10 miles away, that would mean that all of a sudden everything was perfect. I know it doesn’t sound like a big deal but my “touchiness” about this subject has a background that I wish didn’t exist. 

 

Brief Update… Okay I’ll be a Little Less Vague

So I’ve not only been “Let of out jail” again, but I was able to tear off that “Errr…Urrrr… Arrgghhh… two week holter monitor off today.” And yea, I tore it off and threw it in my bag. And yes, it’s all ready to mail out tomorrow. Out of my house, out of my site, OUT! FREE AT LAST (YESSSS I’M SHOUTING)!!!! Not quite “Sound of Music” dancing yet, but that will be in the future along with that tattoo idea. To hell and back man.

I’m sorry this is so vague but I am overly tired. Since I’m still up… I was just let out of the hospital again yesterday~ actually since it’s past midnight I was released on 3/26 (not only did I have my issues with SLE, active kidney nephritis, all those medications to battle this, sick/ bronchitis/ pneumonia progression since March 4th and still have not returned to work, but I’m not sure how long I had low sodium for. It sucked big time!!!  Decided to take a leave of absence until I get totally better since I’ve been hospitalized in December, February, and now March. It was such a difficult decision to make based upon my pride, work ethics, not wanting to admit that I need this, and other internal conflicts. I wasn’t feeling the best when I left the hospital however when they asked me if I felt okay enough to leave or if I wanted to stay at least one more night for observation and rest, I jumped at the opportunity to go. I would have stayed because I was still feeling weak and knew that since I was finally sleeping all I really needed was probably sleep and to make sure that my sodium level didn’t drop again (since it ended up dropping while I was in the hospital at one point to 113 which was the lowest it’s ever been) but the nurse that came in that morning for the 7am shift made me so angry that I was not going to deal with her on top of everything else. I took a photo of the board they use to write down their names, their “goal” for me, and where she wrote down/ broke down the times I could have “x” amount of liquid to equal my daily intake of 64 fl. oz. of liquid per day to “make it easy for me to understand,” (as if I was stupid and this was a brand new thing that just started that morning and I have not been at least trying to adhere to this since December 14th of last year when I was first admitted into the hospital)- so for over 3 months! I’m a (sorry) “grown ass woman” and know what I need to do which is difficult in and of itself as I used to drink way more water and liquid than that per day. But all I was asking for was all ice and just a little bit of water (knowing that ice melts and I would still get just a little more fluid ounces for the day), it’s more refreshing (which would make me more comfortable), and I wouldn’t have to drink a bunch of water to get this relief/ refreshing feeling. She mocked me as if when the ice melted, it would still equal the same amount of water (a nurse during my first visit actually offered to take the time to figure out exactly what the difference would equal so I could choose ice or water and stay within the daily fluid restriction), and she mocked me and “made me look stupid” in front of the girl that she was training, she turned around right after I asked her if I could have a full cup of ice and just a tiny bit of water in there and asked someone else to give me “x” amount of water and half of that ice (which was not even half of my total container which I requested and never had a problem requesting before). I didn’t want to drink it, I wanted to suck on ice, I didn’t want all the ice to melt, I didn’t want to keep calling and bothering them when I wanted or needed more especially because it seems like everything takes like at least an hour to get after you call to request it, etc. And why would I need 14 oz. of water during midnight through 6 am when I would be sleeping and was assured by the head nurse that they would request for me not to be woken up during those hours so I could actually get some uninterrupted sleep for the first time in like five days? I could see myself having to “beg” for my medication. In response to my friend who is a nurse telling her that I had told her I was hungry was that I “must eat a lot at home” (which I don’t, I am very picky about food so I wasn’t eating a lot of the entrees but a lot of salads, and sides.

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I also found out that I was on the wrong diet… I found out today from the dietician I saw). For instance, by the time breakfast came, it consisted of one slice of toasted bread cut in half & I’d put a little bit of jelly on it; half a slice of a small bagel (since I don’t like meat or their vegetarian sausage or whatever), a small cup of fruit, green tea (and sometimes they would give me a small container of apple juice or cranberry juice~ or they wouldn’t because of my fluid restriction). They used to give me unsweetened iced tea when I ordered that until they decided I couldn’t have caffeine anymore. Then I would have to wait five hours until lunch when I would have more crappy food (my diet consisted of a “healthy heart?” diet or something like that (which I was told was just because of the kidney problems) and then on top of that no sodium at all so the food was not only scarce but disgusting). Today the Dietician told me that they were basing it on the best diet for my diagnosis at that time but later when the hospitalist came to ask her about it because of my questions and the hospitalist was confused as well and wanted further clarification, they figured out together that I actually had “SIADH.” She told me to write it down because it was “a long one.” It stands for “Syndrome of Inappropriate Antidiuretic Hormone” and basically my body still retaining water but without the outward appearance (like it won’t show up as edema in my feet) but is more internal). Also resulting in lowered levels of electrolytes (including sodium). So this is why I was cramping more in the fingers, toes, feet, calves and thighs; the reason for my severe headaches (or at least explains them in part), confusion, and a bunch of other stuff I was going through. I guess it made sense later because they treated me for dehydration and sodium loss by giving me a lot of IVs of fluids, sodium, etc. and then even more after they performed another spinal tap. My sodium went up for a while and they took me off. However I was wondering why they came back at midnight to put me back on the IVs (my sodium dropped further to 113) and on top of that I had noticed that I was swelling even more after all those fluids, but you could just see it mostly in my face.

In the meantime, the hospitalist has taken me completely off of Lasix for now until I see my Nephrologist on 4/3 and given me Sodium pills (1 gram tablets/ 3x a day), and my Rheumatologist who visits the island twice a month (who I had an appointment with today) said I could start reducing my Prednisone from 30 mg/ day to 20 mg/ day). I am super excited about that and hope that everything is awesome. I won’t go through ALL the grueling details regarding yet another hospital stay but will stick to the main points (if I stay on track, which I will try. And now that I don’t have low sodium and know what it feels like with the weakness, cramping in extremities and feet/ leg muscles, the extreme fatigue that’s even worse than usual, and the maniacal confusion, for lack of a better term right now- delirious, but worse, I think I can handle the task more efficiently). 🙂  And not everything was horrible, I had some wonderful nurses, technicians, and other medical staff that made everything much better and I greatly appreciated and let them know that I appreciated them and their care. For some reason I also can’t have caffeine. I have to figure out if that’s “for real” or not because it was hard enough for me to give up soda in the first place but I was substituting that with unsweetened iced tea and trying just a minimal amount of Stevia as I was trying to stay away from high fructose corn syrup/ fructose/ aspartame/ and splenda for my own reasons. I would like to continue drinking that for now if possible but if I shouldn’t I will refrain but if it was because of a misdiagnosis, I need to know. I’ll figure it out soon enough.

I’m up because after my appointment I ran into a friend of mine who needed someone and of course I was going to be there for her. I picked up and quickly turned in my LOA paperwork to my manager and told her I had to go asap but gave her a general run down on my paperwork and told her if she had any questions to call me and then escorted my friend to the ER to report a domestic violence charge. After everything was over I took her to eat, we talked, decided we were going to pick up her kids and she was going to stay at my house. She called the police to escort her to pick up her stuff and was supposed to meet me back at my house and it was pretty late, I was overly tired (still trying to catch up on all the sleep and all and not feeling the best) and it was taking way too long for her to come back but I was too afraid to call because I wasn’t sure what was going on and didn’t want her husband to answer). I knew she should be safe because the police were there but knew they had to be gone as it was 2 hours later. So luckily I also took a shower, and did other things as I waited, making sure that the phone was nearby and audible at all times. Finally I realized that I could try to text her oldest daughter as she knew what was going on and I felt terrible because it was like midnight already. Luckily she was up and said that she was with her mom, they were talking, she was pretty sure her mom decided she was going to sleep at home that night. I thanked her as well as apologized a few times for bothering her at such an hour but I was just concerned and to let her mom know if she changed her mind, to give me a call, she still had somewhere to stay. I was a little disappointed that I feel as sick as I do yet I tried my best to extend myself way beyond what I should have done for anyone and she couldn’t call me to let me know what was going on and that she had changed her mind. I won’t say anything about it because I don’t want to hurt her feelings and the only reason I say something here is no one that I know reads this blog so I know she won’t find out and feel hurt, bad, or anything; because that’s the last thing that I want. So now I can’t sleep so I might as well blog a little since I’ve been gone for a while.

Well before I go to bed, I did want to research for a moment and see if a dog can learn how to detect low sodium levels and then if so, if my dog can become certified to do this so she can become a service animal and be with me all the time. Lol. She’s my baby.

Frustrated and Sick

13 March 2014, 4:04am Wednesday

I’ve been M.I.A because the same week that I returned to work after the last hospital visit, I caught a cold. I haven’t been cold/flu-type sick since 2008 and I am extremely careful because I remained sick for two months. So I returned last week Monday just to start feeling an onset of grossness on top of everything else on Wednesday night and then have been out ever since. A visit to my PCP who couldn’t give me anything for it and said to continue what I was doing: resting, Tylenol, Day/Nyquil, gargle with hot salt water, and I was drinking green tea for my sore throat. We both thought I’d be able to return to work the following Monday. The “cold” or whatever this is just won’t go away. It lingers, it’s a slow progression with symptoms that come and go. More migraines than usual; restless nights; chills then hot sweats; a sea of sweat at random times; a tight chest; fingers cramping and locking and toes/ feet that follow suit, striking suddenly without warning, the pain almost unbearable depending upon the duration and intensity of the cramp. My voice started coming and going on Sunday and though I am not coughing a lot, my throat feels like it’s all torn up. In the past couple of days I’ve only coughed up a little bit of phlegm. Also I had been dizzy, foggy-headed, and later started having really bad shakes. The most worrisome thing though was when I felt my nasal passage and throat closing up and once again I had difficulty breathing. This time worse than in December because it included my nose and my already tight chest, that felt as if someone was sitting on me. It happened a total of four different times intermittently until I finally was scared enough to ask my mom if she could take me to the ER as a PCP or Walk in/ Urgent Care Clinic will send you directly to the ER for that. Of course by the time we got there, I could breathe again, only my chest remained tight. In fact, my EKG, Lung X-ray, blood work, and vitals all showed up “normal” with no signs of bacteria or infection. Again, I was going to be sent home without anything. I hoped they would at least keep me for observation as most of the “severe” symptoms weren’t a constant occurrence.  I asked the ER doctor, “What do I do if I can’t breathe again and it’s worse than the last times?” He assured me that my oxygen wouldn’t  be completely cut off and I would end up being okay and also to continue what I was doing… which I had been doing for five whole days (at that time) from the beginning with symptoms progressing for the worse. For my peace of mind, I asked him for an inhaler and something to soothe my throat. It made me feel a little better especially since the first night that the breathing issues began, it reminded me of when I had severe childhood asthma and I did start to wheeze. He said he heard a little bit of crackling on the right side of my lung but then nothing else on either side. I was so frustrated, even more so because all of their tests showed that I was “normal,” as if I was making everything up! How could that be? I am still perplexed. This doesn’t feel like a regular “Lupus flare” that I am used to, it feels like a cold/ flu and I was worried because of all the immunosuppressant drugs I’m taking and all of my current health issues, I might end up with something much worse. It’s good that’s not the case but I still hoped that something could “fix me now.” You would think I should know better by this time!  He wrote me out with a return to work day of March 13th (today).

The next day, Tuesday, I went to the pharmacy to pick up more migraine medication. The eight pills that I received two weeks ago were gone despite me trying to be frugal with them. When I got there, I was told that my insurance wouldn’t cover it because I was “picking it up too early.” I asked when could I pick up the refill? The answer was unacceptable, with no leeway, and what seemed like exactly 31 days from the date I originally picked up the expensive medication.  I asked how much would it be to purchase out of pocket. It was going to be somewhere way over $200. I couldn’t do that with all the hospital and doctor’s bills that I’ve had lately. And for eight?!  The pharmacist told me which migraine Rx would be covered by my insurance now so I sent a message to my Neurologist explaining the situation along with the request but stating I wasn’t sure what he wanted me to do or what he wanted to prescribe me. I received a call from his office early this morning saying that there was a cancellation if I could come in within the hour to see him, so I did.

We talked about different options and he gave me a Rx for another migraine medication for now (again only 8 pills are allotted per insurance, however it’s much cheaper), but I am not sure if they work yet. (I’ve taken a couple of migraine prescriptions in the past that never helped and was so happy to have found that last one). He gave me a shot today. My first shot in the butt (that I recall)~ the “highlight” of the day I guess. Then on Friday I have an Occipital Block scheduled (a shot in the neck along with an anesthetic shot because they are kind). I don’t like the sound of this one but I guess it can’t be worse than Cortisone shots in the nerves of my feet. Tomorrow I “get to” have another Echo Cardiogram done and then an event monitor put on me with instructions that I need to wear for two weeks. Needless to say, my Neurologist wrote me out until Monday. In the meantime I’m trying to get better because I need to go back to work but not being able to sleep, worrying about things, and too many unexpected drastic health changes all in a three month period. It feels like it’s one set back after another, wondering what will be next, yet hopeful because of lab work showing the numbers are moving in the right direction… for now. (Although at times they fluctuate like crazy from day to day or week to week). I don’t mean to sound negative. I used to think of myself not as a “pessimist” but a “realist.” Which was really the same thing to me in my life experience. I see now see that constant negative thoughts drain the energy, the very life out of (the collective) “us,” it is exhausting though “you” don’t realize it, “you” do worry about things that never happen, and sometimes things do turn out the way that “you” want them to, even if it’s not “soon enough.” So I teeter totter between the two extremes, trying to find a balance that I cannot yet get a grasp upon. When I thought about 2014 last year, I thought, “2014 will be the best year ever!” And realized that I had no idea what lie directly ahead. On the other hand, it re-reminds me that Life is precious and easily taken for granted; that it’s the moments, fragments of Life that truly make up Life and not just a long term “happily ever after” feeling; that we all are mortal and have a limited time to decide and do the things that we really want to do instead of waiting for another time or opportunity that may never pose itself. Life is right now.

We don’t necessarily have control over the slew of ailments, pains, etc. that our Lupus decides to sling our way but we do have control over our decisions. We decide with our doctor’s what our options are as far as treatment and discuss them if we have an issue with it or ask questions; we decide if we will follow that agreed upon treatment, we decide to be more proactive when we have to be, and most importantly we choose our attitude. To live a Life full of life to the best of our capabilities or to merely “live” as if we are only a shell of a person without a soul left. It doesn’t mean that we’ll always be happy about the circumstances; that we won’t sometimes get frustrated and angry at people; that we won’t feel exhausted from merely going to doctor appointments, procedures, and tests multiple times a week, too many times a month; and it doesn’t mean that we will never feel sad, lonely, afraid, and maybe at one point a “little bit” bitter. Maybe it all comes back to balance and breathing. I’ve been trying to tell myself to meditate. I have such a difficult time doing that because I’ve been having high stress lately and generally my mind can’t just remain still, sometimes I have a problem just laying still. My mind is like a crazy subway station, full of crowds haphazardly rushing in all different directions, it just never stops, and is random, and goes off into tangents. If I lay down too much when sick or exhausted, because I have so much to do, I feel like I’m “wasting time” even though a part of me is telling me that my body is saying that I need to rest and not to overexert myself. Okay I am convinced, I do need to work on meditating and quieting my mind. Although I’m off for the rest of the week, I’m already exhausted with the appointments I had or will be having since Monday at the ER with the five hour duration including wait time on top of feeling “sick” or whatever this is since everything showed up as “normal.”

Has anyone else had experience with feeling sick or flu-like symptoms and all tests returning as normal? Just curious.  Or are there just no answers? “It’s probably just the Lupus.”?

Day by Day- Crazy Flare

Rainbow08 March 2014 Saturday

My medication has at least tripled if not quadrupled within the past month and a half. It’s strange how until just recently I can only now feel it affecting me in a negative way. You would think that you would feel such effects when you first started them. I’m sure, and hoping that it’s at least making me “better” but as far as how I feel lately, especially today, I just don’t know what to say. I probably have already said this and I’ll say it again and probably again, I wake up more exhausted than I am when I go to sleep at night. Not to mention I have problems sleeping and have to occasionally take sleeping pills. I don’t take them too often because I don’t want to get used to them and have to take more. Frankly, I just want to be off of all my medication already, I’m over it and I have a feeling all of this has just begun and I do have at least three more months, if not unforeseeably longer to get out of this crazy flare and chaotic war going on within me. I had never wanted to go back on Prednisone again after the first time when I was first diagnosed because of all the ways that it made me feel. I felt like I was merely living, breathing, just occupying space. It didn’t feel like a life, especially on the days that I could not get out of bed because I was so exhausted, in pain, or whatever. I remember frequent and long Leaves of Absences from work and “FMLA,” which I recently had to “apply” for again, after not having it or needing it for almost 10 years; living my “semi-normal” life which we call “Remission.” A blessed state without all of the worry, stress, anxiety, the good days as well as sometimes really bad days. At least that’s a part of it for me as this is the first time I’ve experienced remission and then a major flare that came suddenly and unexpectedly, seeming to want to make up for lost time. Something I thought would never happen. I guess I just hoped that my changed attitude (positive, for the first time in my life) had the “power” to change every aspect of my life, including my health, and make me “well enough” that I would never have to worry about such things again.

So today I had my scheduled monthly massage. I figure since my back hurts a lot and it helps me to relax, I deserve it. I work hard and for so long all I did was live paycheck to paycheck and struggle to just pay the bills, which I was successful at, but barely had money for anything else. Especially while supporting someone else who didn’t see a problem with taking my money, credit card, or debit card while I slept to buy herself things that I could barely afford for myself. I didn’t eat well for a long time, I’ve always had problems with eating because I’m very picky and am not necessarily fond of food. I also have my own complex. One thing that may just sound silly (to use a mild adjective), is that I am very self conscious right now about the way that I look. Some days are better than others as far as my face & body due to bloating since my kidneys aren’t functioning at full capacity and at times there is still fluid in my lungs, but not enough to actually do anything about except to take Lasix. The Lasix had to be cut down because the Hospitalist said that it was the cause of the sudden drop in my Sodium level, which landed me in the hospital a couple of weeks ago. But now that I take it less frequently, I can tell a big difference. Once again I am uncomfortable in my clothes (right when I could finally wear a third pair of shorts- one that for once I could actually button a week and a half ago). I was so excited! How sad. When you feel big and uncomfortable in scrubs, there’s a problem. I have to be careful which socks I’m wearing, especially when I wear shorts because of the edema and then the water retention is more noticeable when the rest of my ankle or leg that is exposed at the top of the sock is totally huge compared to where the sock has made a big indentation in my leg. Sometimes I look down on my thigh and can still see Mia’s (my dog’s) paw print indented on my thigh! When I wake up in the morning, you can see the lines from my sheets and pillow case all over my face, arms legs, back, any body part that I layed on that night. I was 130 lbs. which I’m pretty happy with for the most part and even though I have lost water weight since January 29th when I was at my highest in a long time, I’m slowly gaining weight every single day again. Today was a bad bloating day, especially in my face. It makes it look like I weigh even more than I do and it’s not that I’m eating so much, it’s just some weight and mostly water. I never imagined water could weigh so much. But I guess if the edema which used to only be in my feet and ankles can go all the way up to my lungs, heart, and pretty much fill up my whole body (I’m approximately 5’6″), then I guess that’s a lot of water. It’s so hard for me to stick with the fluid restriction of 64 oz. of liquid a day as I used to drink just five 32 oz. of water at work alone. Though I don’t want to, I’m going to post the pictures of myself. It’s one of the most difficult things I have ever done but I’m hoping that maybe somehow it will help me to just overcome this ridiculous phobia. There are more important things to concern myself with. Like getting better and resting more when my body tells me to instead of being so defiant and stubborn sometimes because there are so many things that I need to or should be doing.

I had my sister totally chop my hair off. I knew it wasn’t a good time because of my frequently bloated face however I was just ready for a change and I chop hair off. I had my sister do my hair and make up today because I just felt so bad about myself, nauseous (I even felt like this during my massage which I usually thoroughly enjoy), overly exhausted, impatient and short tempered, in pain, weak, I had to take my migraine pill today so had just a headache for a few hours, and felt overly medicated. I’ve been thinking about alternatives but want to research it and discuss this with several of my doctors before I do anything differently. You never know what may interact with current medication, or the condition of my body, etc. But I am determined to get off all of these medications. I went to see my PCP the other day because I was coming down with a cold or something. I knew he couldn’t do anything for me but just wanted to make sure it wasn’t something worse than I thought and I wanted to discuss a couple of things with him. I pretty much knew the answers but one of my friends had expressed concern. I’ve been really shaky lately but I told her that it’s all of the medication. I was like this, except worse back in the day when again I was on a lot of medicine. The other day I was changing banks and needed to fill out paperwork. I had to ask my mom if she could fill it out for me. That was hard and embarrassing for me, and I think it hurt my pride to ask for help because I could not write without each letter being a shaky mess. I’d like to say that I have no pride, I am not a “proud” person, but I think to a point, we all have pride. And to ask for help has always been difficult for me, never wanting to burden or inconvenience. Especially when you have to ask for help for something as simple as filling out an application. But I would do anything for anyone that I love. It’s different though, it’s easier for me to give than to accept. My doctor said that he could give me a pill to help me with that (I said no) and he joked that he didn’t want to make me feel like I was a pharmacy. I told him not to worry about that, I already have been feeling like that for quite a while now. So we both agreed to leave it as is, it’s just embarrassing especially when I’m at work and no one knows what’s going on with me and neither do I want them to know. And now with all the immunosuppressant drugs and possibly some of the other ones, my skin, especially on my hands are thinner so it’s easy for me to get scrapes that I don’t notice until I feel them stinging or bleeding. And they take a long time to heal whereas despite the Lupus, in the past (the days of Remission), I still could heal relatively quickly. But then again what do I expect with various immunosuppressant medication?

While gathering the three horrible photos (despite me just not liking them for the reason I stated earlier), and that they are horrible, I found some of last year (and one from 2010 where we went ATV riding and I had a blast), photos that brought a smile to my face as I was having fun and feeling a lot better than I do now, so I wanted to post those as well. These will be my motivational photos, that one day soon, I will be doing these things and more. Feeling alive and vibrant in paradise.

I’m hoping to get over this cold soon. I just returned to work on Monday after being in the hospital and staying home after that for a week. Then I was out again by Wednesday. I’m going to drag my butt to work on Monday no matter what like I usually do, or did before this recent set back. My PCP told me he could tell I go to work even when I’m sick because he will see me and I’m pale, limping, or don’t look well. I didn’t know it was that obvious. Better days lie ahead, right? Right. 🙂

Where my Initial Research on Lupus and Membraneous Glomerulonephritis Ended

There was a lot I was going to write about but luckily I looked back to that first long posting about my basic history with Lupus and Glomerulonephritis and saw that I already mentioned a lot of that information. As this blog progresses I must warn you, I may sometimes forget and not be able to go through all my posts to see if I’ve said it before. I hope you can bear with me and just pretend it didn’t happen. 🙂 Or perhaps it would be a good “refresher” for you somehow. 🙂 I’m trying to be positive here and to give you fair warning.

So as I had previously mentioned, I did research extensively on my diseases, was frustrated, overwhelmed, when I tried to share this information with my significant other, it was all in vain as apparently it was pertinent and important only to me. I felt even more alone, and as family members and other friends reacted in similar ways, I closed up even more. If you live with such a disease which is unpredictable I am sure you have experienced (but hope you haven’t) the feeling that you are even more alone than you thought. Especially when you had never heard about the disease in your life, or maybe you heard it mentioned, or know just a little bit about it, but it was always about someone else that you didn’t know. However you may know someone with the disease and when you got it, realized not only what they were going through but that you had absolutely no comprehension before about how they felt at all (whether emotionally, physically, especially when pain is involved, the exhaustion, etc.). I learned that I could not make future plans and stopped. I was taught by my dad (my parents were divorced by the time I was around 3 years old) but even though we at one time lived thousands of miles away at the extreme sides of our country (Kaua’i and South Carolina), he did his best to keep in touch with us, had us come out to visit him or vice versa, and at one time moved back to Kaua’i for a year or so in order for us to be able to see him more. Even though he was not always physically there and he had his issues, he taught me some very important life lessons, or at least I find them to be of importance and core values. One core value was if you say you’re going to do something, then you should do it. “Your word” is important and shows integrity and respect. So for me I’m always on time, even earlier when meeting someone and I always meet with them even though I may not feel up to it that day for some reason because I said I would and it would be rude to cancel at the last minute when someone else is looking forward to something that you both verbally committed to. But when I was sick back then, I had to stop making these commitments because I did not want to break my word. Once you broke your word, how could anyone ever believe anything you said again or trust what you said from then on? I had to live day by day because maybe I felt great or okay one day and then the next day I would be in severe pain, exhausted more than usual where it felt like an effort just to sit up and breathe air, bad migraines, nausea, or whatever symptom I might have that I did not plan on since Lupus does not work on a schedule. There are no designated “off” days with Lupus or days that you will definitely feel worse or definitely feel better. It’s a day by day, moment by moment disease.  Not being able to make plans or commit to them also contributed to me closing  up more as I wasn’t as social as I once was. And because my friends did not understand, some got angry or hurt about it and eventually no one asked me to do anything anymore because I could never say that I would definitely do it.  This caused depression, a lot of different things did back then and reoccurred last December when everything came back suddenly without warning, worse than ever and I ended up being admitted into the hospital for the first time ever in my life.

But back to the initial research. I pretty much found out that Lupus affected everyone differently.  I now viewed the majority of the information I had gathered as “textbook” or “theory” but not actual experiences. This subject was something I was more interested in. I knew that because everyone’s experience was different and there were various stages or progression of the disease in individuals, I would never really know exactly what would happen to me, however I felt it would give me an idea. Better than just a theory, this would be about real people that shared the same disease, just at varying degrees. To me to know something would be better than knowing nothing. Maybe I could be prepared just in case something similar happened to me, or know the possibilities of this disease and how kind or how ruthless it could be. In my search I ended up at message boards. I browsed around a bit at a few of them until I found one that I liked more than the others. I read main topics regarding Lupus itself, people’s stories, questions that members would post and the responses they received from other members who either went through the same or similar situation, or provided helpful information or advice, or just to say that unfortunately they did not have the answer but wished that person the best of luck or some sort of kind word or some form of encouragement. It felt almost like a family, but not. But people who actually “knew” what each other was going through, most of them probably feeling just as alone and isolated as I did. I was shy and quiet for most of my life and did not post that often but did post a couple of questions, explaining what I had, what I knew, what I was now newly experiencing, and asking if anyone could offer me an answer as to what might be going on. I received great responses and eventually started to respond to the posts of others if I had anything to contribute. On one such site, which I haven’t been to in probably a decade, I did end up in contact via email with a woman from England. One day I had gone back on just to send her a message and check up on her but I never received a response. I still wonder to this day about her when she pops into my mind. Did she just tire of the site like I did or get sick where she just couldn’t get on the computer? Was she okay? Did she pass? I hope the best for her and really for all of my fellow “Lupies.”

I had read online about Lupus support groups which existed in some places across the country, including The Lupus Foundation of America. Meetings that you could attend with other people who had Lupus. I thought that would be great, however I do not believe it existed in any of the areas where I lived. And again, being on the shyer side, it was more comfortable for me to “hide” behind the anonymity of a username on a message board. I had grand ideas in the last month, (though still horribly depressed), that I wanted to start a Lupus group here because when I researched it online, it appeared that one did not exist here. I emailed someone from a website I found that I thought could help me find out if there might be one that wasn’t showing up online, especially since I found this Lupus website  under my state (Hawaii). I still haven’t heard back. Who knows, maybe that’s an old email that is no longer valid or no longer checked. I thought about what type of meetings I would like to hold, how it would be anonymous (kind of like AL Anon or AA since not everyone wants others to know their personal health business, especially when it comes to possible employment issues), it would be free to join, if we wanted to do events we could tentatively plan them and do fund raisers or something to raise money for any events or miscellaneous we would need (like maybe if we were raising money to do a walk for Lupus, if we were able to walk, we could participate and have similar t-shirts made to unite us as a group with our purpose/ name on the shirt and the fundraisers could help us with that since people have their own financial issues, especially with medical bills so I didn’t want to ask for “dues” of any kind. I wanted it to be free so that people who really wanted to or needed to come wouldn’t hesitate just because of the money factor. Money we raised for our walk (which wouldn’t exactly be set for a specific date because of the unpredictability of Lupus) but maybe over a time span that we all agreed upon and we could walk at anytime during that period and even walk on separate days to meet whatever our walking distance goal was. Maybe we could even have a family member or friend agree to be a designated walker for anyone in our group should that person not be able to participate for whatever reason. There were a lot of details to work out and it would be something everyone would have to agree upon but it was one such idea that I had. I thought the group would really help people and knew that they once had meetings here because a friend of my mom ended up with Lupus and she would go to the meetings but when I asked my mom about it she said that she thinks the meetings stopped and it had something to do with the people always asking for money. Because I work at an outpatient clinic, I thought that it couldn’t hurt to ask different providers or educators if they would be willing to either do an interview with me where I could ask questions that our group had to present them with the answers of a professional in that specific subject, including diet education. Or if they would agree to actually come to one of our meetings, even if for only a portion of the meeting to do a little speech and question/ answer session, I would have preferred that. I wanted to offer so much that I thought might not be offered anywhere else, especially for free. I would even try to find sponsors or whatever I had to do. Yet I knew I was still battling with my loss of kidney function, on so many new medications including 2-3 immunosuppressant drugs which made me even more afraid of getting into contact with sick people, my blood pressure was unbelievably high for the first time in my life and it wasn’t going down even though they doubled my dosage and then doubled that dosage. I was told I would have to wait for 4-6 weeks to see results but it was almost 4 weeks and I still wasn’t seeing a big difference. My blood pressure has always been normal or a little lower than normal which was fine, at my worst point in the hospital in December, I saw it go somewhere over 200+/114.  Since then as I was monitoring it on and off as well as seeing my PCP as well as a whole bunch of specialists, I would see my blood pressure then. Always 170-200/ 87+ – 100+. Since I have seen my new Neurologist last week I believe, he asked my Nephrologist if he could change my blood pressure medication from Lisinopril to Candesartan. My Neurologist said it would help with my blood pressure plus help reduce my migraines which he was sure was Lupus induced. But when I mentioned the migraine part to two of my doctors, they said they never heard of that which made me start questioning myself as to what I may have thought I heard but never did any research on it and probably will one day just because I’m curious but am not concerned about it right now because all I really care about it is my blood pressure is going down.  Yesterday it was closer to “normal” and then today slightly below normal. Talk about being grateful and ecstatic for the things that seem so small, that other people don’t have to concern themselves with, that we take for granted when we have healthy bodies. Because my blood pressure is going down, if I understand correctly, this means that I do not have to be so concerned about my Congestive Heart Failure that I was diagnosed with in December as much, that my kidneys are probably getting even better (function is rising back to a “normal” level where I don’t have to concern myself about changing my current medication CellCept to a combination of those pills along with Cytoxan. I was highly concerned with the whole connection between my kidneys, my blood pressure, and my heart.  Now I feel relieved that I don’t have to worry so much about my heart, I just need to maintain this blood pressure, which will in theory I believe indicate success in my treatment of the kidneys where I can possibly go back into remission within the year, maybe even sooner. Last I heard from my Rheumatologist, there is still some water in my lungs and I have to adhere to my strict fluid restrictions. I can have up to 64 oz of any type of liquid (drinks, soups, foods like grapes or whatnot that might have “juice” in them) which is very difficult for me as I would drink approximately five 32 oz of water a day at work alone. But I know I have to listen because my kidneys aren’t functioning at 100%, they aren’t getting rid of the “waste” it’s supposed to filter out and I still have edema. It used to be extremely bad where my ankles were unbelievably huge.  I have bony feet and hands but you could see absolutely no bones, just grossly hugeness. If I pressed down, I could press deep and my skin would stay indented for a long time, I don’t even know how many minutes. Later not only were my feet and ankles swelling, but I was extremely swollen all the way to my thighs, then it started to show in my face (I gained a lot of weight in a short amount of time). I never went to my doctor because I had edema before and it so happened I had an appointment on day 3 of it where it was still bad and showed it to him.  All he did was press down on it (like I had a hundred times) and said, “Yeah, you’re swollen, see the indentation and how long it takes to go back to normal?” And that was that.  So I thought it wasn’t a big deal or surely my Rheumatologist would have said something, knowing that I had Glomerulonephritis as well. (This is just one reason I refused to see him after only two visits). At this time, my edema is not as bad yet I still have swollen ankles, legs, face, puffy eyes, and sometimes no eyelids because of the water retention. I need to make the job of my kidneys as easy as possible right now.  When nurses that I worked with finally talked me into going to see my doctor I did so and he ordered lab work for me immediately as the edema would be indicative that something might be going on with my kidneys or to find out exactly what was going on. I felt like the Rheumatologist pretty much did me a great injustice that could have perhaps cost me my life if I left everything alone because he wasn’t concerned about it. I trusted him at first to know better than I did and figured I was worried about it for nothing. My weight still fluctuates greatly because of this. I want to be 130-133 lbs. again at the most. Right now I’m at almost 148 lbs. On a January 29th visit I was 158 lbs. And I did lose more than the 10 lbs. but then gained some back. I’m not as concerned with that as I was with my kidneys, blood pressure, and heart because I know that once I get those things under control, I will get back to my target weight.

About two weeks ago I had my hair chopped off and had it cut a little bit more this past Saturday. I was at the point that I was completely stressed out (one thing was my whole health issue that I had been worrying about daily for the past two months and seeing no changes for the better), and then came unhappiness, stress at work & every aspect of my life, some of the medication like Prednisone makes me feel angrier than usual, more tired, less patient, etc. (a few of the reasons I never wanted to be on it again), coming to terms with the fact that I could never have a baby at all.  I especially wanted to carry my own child so I could have a “mini me.” She would be a part of me (or he) and I would have this life to take care of and love and to teach wonderful things to. I didn’t want to miss out on this life experience and I wanted to experience having grandchildren, having a family of my own. One of the first things I thought of when all of this started happening unexpectedly was about my dog (my “baby”) Mia. I love her so much it’s ridiculous to some and I am grateful for her every day of my life. I was afraid that I could not die because who would take care of Mia the way that I do? My mom told me she would take care of her for me if something should happen to me and not to worry about such things. But I told her it wouldn’t be the same.  I told her Mia sleeps in bed with me and she would never allow Mia to sleep with her. I was afraid that because Mia didn’t know that I died, she would think I abandoned her after she had been sad for days or weeks waiting for me to come home. One thing I feel guilty about is when I had to make a rush decision and put in my two week notice at work in Colorado, bought an airline ticket, started boxing up things and mailing them back home. I finally had the money to move back home (it had been twelve years since I wanted to return and an opportunity came up that allowed me to come back). Hawaii’s quarantine rules are very strict and when I glanced over the paperwork, I thought I could get her to come with me under direct release because I always took her to the vet since I first got her as a puppy and she already had two rabies shots, she was an indoor dog so didn’t have rabies, never had fleas or anything, she was already spayed & micro chipped. I knew that she needed to have a rabies titer but I thought that after the results came back all would be well. I was wrong. Even though it showed that she did not have rabies (and she already had her two rabies shots previously and the second one was still good for about 2 more years), there were two options. I could either have her come with me to Hawaii anyway but she would have to be quarantined on a different island for 120 days. The other option was she could wait 120 days where she was in Colorado and then I could have her sent to me and pick her up on O’ahu. It was one of the hardest decisions, both “unacceptable” to me, however the “lesser of the two evils” was for me to leave her with a friend that Mia was used to and knew instead of me “selfishly” taking her with me and having her locked up in kennel conditions on a different island where I wouldn’t even be able to see her all the time but it sounded like they wanted you to come visit and play and feed them everyday. I felt like it would be akin to me “putting her in jail,” that she would feel truly abandoned and confused. I couldn’t do that to her. Some told me to just leave her there and give her away to someone. How could I do that to Mia who I considered a part of my family? Who I loved so much? It seemed like one of the most callous things a person could say just because they never felt an attachment to an “animal.” So I left her with a friend. My friend said that Mia would wait by the door everyday around the time I would return home from work and she would not budge and go to bed but would wait until it was very late before going to the bedroom. She started sleeping under the bed, my friend said Mia seemed depressed. I felt such guilt. If I knew I was going to move I would’ve prepared her a lot sooner; also because I did not prepare her, if I knew that I would be faced with this decision, I would have stayed in a very unhappy situation and possibly lose all the money I had earned to move back home to paying not only my living expenses, but a friend who I was helping out who basically lived off of me for a couple of years. But I would’ve waited for Mia to be fully prepared and then leave if I still could and have her directly released with me. So if I was so worried about Mia, how could I with a good/ clear conscience  have a child when I don’t know what may happen to me in the future or that even if I go back into remission for another 10 years, I can never be assured that this won’t suddenly happen again. It would be selfish of me to do so and if I can’t leave Mia, how could I leave my own child motherless? Coming to terms with this realization added greatly to my depression. So after that second hospital visit in two months I went straight for the hair, which is what I sometimes do. My hair was finally growing out from the last time I did it about 4 years ago and was at the middle of my back so I was waiting for it to grow down to my waist again and then maybe consider cutting it off, or maybe just trim it to my mid back or something. I’m actually happy that I cut it though. I do feel like a “different” person, I have been more positive lately (which I thought would be impossible) since I was so negative about ever thinking positive thoughts in my life, my creativity in all my areas of interest are returning, I’m more inspired, and slowly I’m improving my life and living space in ways that are affecting me in positive ways and reducing stress and anxiety.

I like photos. I don’t like to be in them but I eventually want to post photos, maybe make a gallery. I did want to change my Avatar and personalize it so I was thinking about using a picture I have from last year. At some point I’ll post more. I don’t have many lately but I know my Aunty made me be in a photo when I really didn’t want to be because I was bloated that day, I did not like the fact that I had gained so much weight, and wasn’t feeling well that day. But I don’t even care what negative thoughts are directed at myself or my photos because I know a lot of it is caused by my current health condition. And I think it might help some people out, who knows. I remember when I was first diagnosed and I gained a lot more weight and got up to around 190 lbs. and I was so ashamed of any photos that I was “forced” to take part in. I wish I had one photo from back then which made me so depressed at that time that I even wrote a poem titled “Ode to Prednisone.”

I know I have fully strayed from topic. It’s almost 4 am and I was at work yesterday by 6 am and today I work at 7:15 am so I don’t know how this day will be for me but I really wanted to blog and I’ve been having issues sleeping.

However I do believe I touched on the subjects that I wanted to cover: I stopped researching the topics of my disease but started to look for online Lupus forums (Lupus boards) where I could read about other people’s experience or try to find posts that I felt were pertinent or similar enough to what I was going through to find out just how Lupus and Kidney disease could possibly affect me one day. I wanted to know the experiences of real people. One thing I noticed is when I get a new medication I will usually look it up and read about all about it including the negative side effects but when I would go to the message boards to check on what was going on with other people on the same medication and dosage as I was, multiple people were reporting the same negative side effects that weren’t listed on the other informational sites. I believe these online message boards can be of value whether you just want to browse for answers but better yet if you like it and trust it enough to sign up and become an active member where you can ask questions as well as respond to other people’s posts when you feel moved to do so. It’s always good to contribute in some way if you are able to. You never know what an answer, word of encouragement, or some type of acknowledgment or validation can mean to that other person who may be afraid and feeling alone. Maybe he/she is truly all alone without a family and friends that come and go, basically no one who really cares.

Goodnight for now. My baby has decided to leave the couch a while ago and sleep in bed. I miss her. And I need my rest. 🙂 Hope you have a great day or night wherever you may be.

More About Lupus: Symptoms and Tests

* In response to a comment on a previous post… but I think this is information anyone with questions about Lupus can find useful. I have provided hyperlinks to credit the appropriate sources as well as for you to be able to find more information on what I mention in this post. There are at least a couple of hyperlinks for online sources that I find most valuable when I have questions as well as one I just came across that looks worth checking out. I cannot vouch for that site as I only briefly looked around because it looks just that resourceful. I’ve already saved it to my favorites to check out later and may even sign up on it.  I made sure that all of the hyperlinks work and when clicked, they will open a new window so that you can easily close out of it or go back to your wordpress tab and still be at the place that you left off while reading this post.

As far as your high Sed rate (ESR/ Westergren/ Sedimentation Rate): This test is done to find out if inflammation is present in your body as well as other reasons after you have been diagnosed/ treated for your condition.  A high sed rate can be caused by many different diseases (including autoimmune diseases like Lupus or Rheumatoid Arthritis) but could be anything from an infection, cancer, kidney disease, inflammation of various organs or joints/tissue, pregnancy, etc.). Because of this, the Sed rate is used in conjunction with other tests to pinpoint exactly what you may have.  Even medication (including over the counter meds and supplements can affect the outcome of your lab work so be sure to let your doctor know exactly what you are taking). I work at a clinic and one of the physicians wants her patients to bring all of these things in on their visits and I always wondered what the reason was, especially for over the counter and supplements. I didn’t think that mattered. However at one point my lab work showed that something was wrong with my liver so I told my doctor about a supplement I was taking, as well as an energy drink. He asked me to stop taking the supplement for a week, not to drink alcohol (which wasn’t a big problem since I had quit years ago due to the Lupus & only started to drink a little on rare occasions but next to never) and it had been a while. I stopped taking the supplement and after redoing the test, everything was fine with my liver. My PCP told me that some people who were taking supplements that were supposed to be good for their liver (I don’t remember if they were to detoxify or the exact reason for them taking it) but that it in fact gave them liver problems. I thought how strange and ironic that was. I’ve learned that what you put into your body is very important because they can have seriously adverse effects as well as improve your health beyond belief. Also with the Sed rate, some inflammation causing diseases do not increase that rate, so a normal sed rate does not necessarily rule out a disease.  Some doctors use the C-reactive protein (CRP) blood test instead of the sed rate to aid in identifying inflammatory conditions.  Again, other tests need to be ran along with the CRP test because it doesn’t identify exactly where the inflammation is originating from or what is causing the inflammation.  http://www.webmd.com/a-to-z-guides/c-reactive-protein-crp

Lupus is a very difficult disease to diagnose because there are other autoimmune diseases or types of diseases that are similar to Lupus.  Some such diseases are Fibromyalgia (Affects the muscles & joints which causes pain and stiffness), Sjogren’s (causes dry mouth & eyes, often associated with Rheumatoid Arthritis), as well as Rheumatoid Arthritis, Glomerulonephritis (a type of Kidney Disease with inflammation~ what I have because of the Lupus), Chronic Fatigue Syndrome, & Vasculitis (inflammation of the blood vessels).  http://www.webmd.com/lupus/other-conditions-with-symptoms-similar-to-lupus

If you have kidney involvement, the tests that are used are blood creatinine levels (you don’t want them to be high), GFR (Glomerular Filtration Rate), and BUN levels are another indicator of kidney function.   http://www.medicinenet.com/creatinine_blood_test/article.htm

http://www.webmd.com/a-to-z-guides/creatinine-and-creatinine-clearance

http://www.kidneyfund.org/kidney-health/kidney-tests/kidney-test-egfr.html

SIGNS AND TESTS FOR LUPUS:

I read that Rheumatologists are the best person/ type of physician to see when getting a diagnosis for Lupus. Even though a PCP can run tests, Rheumatologists in general are more likely to make an accurate Lupus diagnosis than any other type of doctor.  You can always ask for a referral if your insurance is not a PPO and is an HMO or if the Rheumatologist’s guidelines are to always receive a referral before he/she will see new patients even if you have a PPO. I’m not sure what the chances of that happening though depending upon your doctor, and if the lab work that he is looking at has no indicative “evidence” for him/her to “justify” sending you to a Rheumatologist, or who knows, it may and he/she may have overlooked it. I would just say that I would like a second opinion, just for your peace of mind, if you need to say anything at all to protect their sometimes seemingly fragile egos. 🙂

http://www.usinlupus.com/lupus-information/what-is-lupus/lupus-diagnosis.html

The following symptoms also comes from the site listed above but I’m pretty much going to use it word for word so it’s mostly quoted.  I will also paste a link that will get you directly to their home page after this because I think it’s worth checking out. I already put it under My Favorites in my Lupus folder for easy finding.

Symptoms: Some doctors use the American College of Rheumatology’s SLE (Systemic Lupus Erythematosus) Classification as a guide to help make (or rule out) a Lupus diagnosis.  In general, if four or more of the following signs/ symptoms are or have been present, there is a good chance that you may have Lupus:

  • A butterfly-shaped rash across the cheeks and nose (called a “malar rash”)~ I had that thinking it was a skin (Dermatologist) issue which I never followed up on.
  • A scaly rash with raised patches (known as a “discoid rash”)~ there are two types of Lupus, SLE which can affect any and every organ of your body, any tissue, muscle, skin ,anything; then there is Discoid Lupus which in general only affects the skin. I found out this year that I have Discoid Lupus as well when I went to the Dermatologist for the first time for some skin rashes (probably from relocating to an island & being out in the sun more without listening and doing what I was supposed to do (cover up and wear sunscreen). The Hawaiian sun also feels different than it does in other places I’ve lived such as Las Vegas, Colorado, and South Carolina.
  • A skin rash that develops after sun exposure.
  • Mouth or nose sores (usually painless).
  • Joint pain and swelling in two or more joints~ My main ones are my knees (mostly the left but could be both), shoulders (especially the left), fingers, wrists, etc. Sometimes my fingers cramp up so bad that they get contorted into positions which isn’t humanly possible to maneuver by yourself. I’ve tried to replicate it but can’t. It is one of the most painful and strange things I have ever experienced and usually happens when it’s cold.
  • Swelling of the linings around the lungs or heart.
  • Kidney problems~ I was diagnosed with Membranous Glomerulonephritis at the same time as SLE. It already showed that I had the disease for at least several years because of how involved/ damaged my kidneys were.
  • A nervous system or brain disorder, such as seizures or psychosis.
  • Anemia, low white blood cell count, or other blood conditions.
  • An immune system disorder~ Which apparently I had for years but did not know about it. I was always exhausted but was like that for so long I didn’t remember if I always felt like that or if it started at some given point.
  • A positive antinuclear antibody (ANA) test. 

Depending on your symptoms, your doctor may still diagnose you with Lupus even if you have less than four of the above criteria. He/she can also rule out other conditions that have similar symptoms to Lupus (previously listed).

So here is the website’s home page: http://www.usinlupus.com/.  Check it out, it has a lot of resources that you can choose from (whatever is of interest to you).  I thought you might like the hyperlink on the home page that says “VisitLupusCheck.com”.  It looks like you can mark off symptoms you have or something.

I liked the following site because it talks about different lab tests done for Lupus (blood and urine tests). http://www.webmd.com/lupus/guide/laboratory-tests-used-diagnose-evaluate-sle.  I’ll list them here but the link will give you specifics on each one at the website if you’re interested.

  • Antinuclear Antibody (ANA)
  • Antiphospholipid Antibodies (APLs)
  • Anti-Sm
  • Anti-dsDNA
  • Anti-Ro(SSA) and Anti-La(SSB)
  • C-Reactive Protein (CRP)
  • Complement
  • Erythrocyte Sedimentation Rate (ESR)
  • Complete Blood Cell Count (CBC)
  • Chemistry Panel
  • Different types of urine tests (which are used to diagnose the effects of Lupus on the kidneys)

In general, I love WebMD (www.webmd.com). They even have a symptom finder and usually gives me sufficient information all in one place and makes it easy to understand. I always research in multiple places though since some sites may have different information and you don’t necessarily want to believe everything you read.  But if what I consider to be a “reliable” source as well as different websites that all say the same thing about certain aspects of whatever I am looking up, I tend to trust that more than the one different thing I read on a single site.

I hope that this has been of some value to you and have answered some of your questions. If not I can look more into specifics on something since I was going to re-research everything again anyway so I could use the information in my blog.

Two Days Worth of Doctors Appointments

Two days worth of doctors appointments and medical related miscellaneous have wiped me out yet I cannot sleep. I know that I need it or I will run myself down. It doesn’t seem like much when you’re healthy but with the way that I’ve been feeling, it was almost too much. Yesterday, February 27th I had my first consult appointment with a Neurologist at 7:00 am. He changed my blood pressure pill (which is somehow supposed to help with the migraine headaches), prescribed me some migraine medication, and ordered an MRI. When I went to Imaging, their next available MRI was in March. I was disappointed yet know that anytime you see a specialist or need to have a procedure or test done, months is the normal wait time. Luckily I knew someone who made a phone call and the tech was willing to see me right then. I was grateful and completed the MRI. Next I went to the clinical lab to complete blood and urine orders for my Primary Care Physician and Nephrologist. From the lab I walked over to Medical Records to pick up my two recent hospitalization records that I requested. It seemed like a long walk as I become easily out of breath lately, sometimes even having to take a breath after a few words when speaking to catch my breath, taking the elevator instead of the stairs, and other things that make me feel “lazy.” I made a few more stops and then off to my last appointment of the day. Something I set up last minute after seeing my appointment schedule the other day, feeling overwhelmed, & thinking about all the paperwork I need to do and organization necessary. The best appointment of all. I treated myself to a two hour massage. My back, body, and spirit desperately needed it. It was awesome for the time that I was  conscious. I fell asleep and at one time woke myself up with what I wasn’t sure was a snort or snore but I didn’t care and fell right back asleep.

Today (February 28th), I had my first consult appointment with a Cardiologist at 9 am. We have some tests planned as well. I will have another Echo done next month and after that appointment they are also going to teach me how to use a device that I will wear for two weeks to monitor my heart. From there we will determine if further treatment is necessary or not as one of the treatments that I am on for my kidneys is the same thing that would be prescribed in one such scenario. At 11:30 am I went to see my Rheumatologist, which was an hour wait. Again nothing new yet never fun. He went over my lab work and told me that since I just started the treatment for my kidneys about three weeks ago, it will take a while to find out if it is working. I asked him for an estimated time frame and he said two months. Two more months of waiting just to see if this is working or if we need to try something else. He clarified a question regarding Plan B. Along with everything else, I would be taking Cellcept in conjunction with Cytoxan and not completely replacing the former with the later. He said I still had a little bit of fluid in my lungs and osteopenia in various places, but other than that, I just have to hold tight, keep seeing my doctors, and do more lab work closer to my follow up visit. The last appointment of the day was at 4 pm with my Nephrologist. My kidney function has improved although not near where I need it to be but I’m happy for the good news. It seems like there will be a lot of waiting. At least five more weeks to see how effective this treatment is. I am on so many different medications right now that I really don’t want to take anymore and can’t wait for the day that I no longer have to take all or any of them.

I plan to tell you about my first hospitalization in December, exactly what’s going on medically with me as far as I understand it, as well as how I’m feeling but one thing at a time. Until next time, remember that there is always something to be grateful for, you just have to direct your focus there. I need to tell myself this often. But it does help when I’m able to do it. It wasn’t always like this for me. I can tell you more about that later but for now I should get some sleep. Tomorrow will be my last appointment for the immediate future and then I return to work on Monday after the weekend. Wish me luck. 🙂

Introduction

15 February 2014  Saturday

Disclaimer:  I am not a medical professional but a woman who lives with Lupus. You should always seek the advice and counsel from qualified medical professionals. This is my experience and my interpretations of what was explained to me or my understanding of what I have researched. Here is my story: 

Hi, my name is Michelle and as I was laying in bed this morning when I woke up, more tired than I was when I went to bed. I thought about the possibility of writing a blog about my experience with Lupus. I hoped that maybe it could offer some answers, maybe a little bit of peace, or any little thing that might help someone else who is going through the same thing yet feeling ever alone. There are different types of Lupus and all of us “Lupies” have varying degrees of this autoimmune disease. Perhaps no two cases are exactly identical however I know that we all have something in common, something we may have at one time felt like no one could understand, been misunderstood and misjudged by others; and sometimes we need to come back to that place (a support group or personal blog) to find that even though we want to pull out our hair and give up on this so called life, there is someone else out there who also sometimes cries inside as (s)he smiles on the outside, or can relate (even somewhat) to how we feel.

When I was first diagnosed with Lupus, the Rheumatologist could not sufficiently answer my question, “What is Lupus?” I don’t even remember if he even tried to explain. His words were, “I think you have Lupus, take this medication (Plaquenil), it can cause irreversible eye damage, and make a follow up appointment to see me.” I was too shocked to realize that I was leaving without answers, that I was just brushed off, with a disease I was “thought” to have with medication that could damage my eye sight. (Of course I never went back to him but decided that I should get a second opinion, just in case. The second Rheumatologist confirmed that I did have this disease). As we drove home, thoughts and questions ran through my head like a runaway train. What is Lupus? How did I get it? When will it go away? Am I going to die? What does this mean? Why me?

As soon as I got home, I rushed to the computer and extensively researched Lupus SLE (Systemic Lupus Erythematosus). It was a mouthful and something I could not even pronounce at first. There were two types of Lupus, one that in general only affected your skin (Discoid Lupus) and then there was SLE that could affect every single organ, tissue, and sinew in your body. Lupus is an autoimmune disease in which the body is not able to distinguish between it’s own tissues, organs, and parts from foreign viruses, cells, transplanted organs, etc. You know, things that a healthy immune system would recognize and attack because it should not be there. Like when you get sick and your body fights and attacks the foreign virus; my body, our bodies just fights and attacks everything, unfortunately including itself. It is not contagious and still an enigma, baffling the best in the world. I quickly discovered that there was no cure which was mind blowing for me. I had just turned 27 years old. Weren’t doctors those you went to to make you better?  To heal you? The ones that you turned to for help that had the answers to everything? In my mind I knew that I had this disease at least three years before I was diagnosed. The second Rheumatologist had pointed out what he called a malar (or butterfly rash) on my face. I had first noticed it at least three years prior however I never went to see a Dermatologist. Aside from having severe childhood asthma which went away with age, I was very healthy. I rarely became sick and quickly became better. I did not like to go to doctors at all. For the rosy rash on my face that spread from one side of my cheek to the other was what I thought was Rosacea. At the same time I was also experiencing this horrendous pain that became worse and worse throughout the years. I thought it was back pain and it was like nothing I had ever experienced before. I initially ended up at my doctor’s office because the pain had become unbearable.

So I backtrack, which I sometimes do. But I will come back, I promise. I thought I was experiencing back pain. I would mostly wake up in the early hours of the morning like 2 am in excruciating pain. Nothing helped. I thought maybe I injured my back and just needed to strengthen it. I would get on my hands on knees on my bedroom floor, get one of my weights and lift to strengthen that part of my back and then do push ups. I would eventually get exhausted and fall back asleep. But I handled it. After over three years of this, the unimaginable happened, the pain got worse.  I could not even describe what I felt as I sat there one night outside in the cold smoking a cigarette. I came up with the best description I could, which was not adequate. It felt like a big steel rod was rammed into my body cavity (my lower right side around the bottom of my rib cage) by a speeding semi truck.  I actually cried from the pain that night and knew there was no other choice but to see my PCP (Primary Care Physician). On the bad days, it felt like a radiating pain, like it was coming from inside my organs and the pain radiated to the front and back of my body.

My PCP ordered a back x-ray and blood work. As far as the x-ray, he saw nothing that would cause such a pain and gave me a prescription of Ibuprofen. I was angry. One thing about me is that I get angry but I hold my feelings in and do not express how I feel out loud. I attribute that to being half Japanese and learning by imitating as I grew up on how to act or react in certain situations, when to question, when to just let things go… I have learned throughout my life that I (and you) can be whoever we want to be and we can change or recreate ourselves at any time. Our definition of ourselves, our personalities, are not carved in stone or static, we are fluid and ever changing. However this is still something that I struggle with for my own reasons yet a trait that I admire in other people. At times I do step out of my “safety zone” in this area and am proud of those little steps that I take.  I am not saying that I am a victim and it is my heritage or my family’s “fault” that I do not speak up. In fact there are people of Japanese descent who do speak up for themselves. Everything I do, the choices that I make, the things that I think, what I choose to believe, ideals that I choose to discard, adapt, or adopt, is all MY decision. It’s all in my hands. I am the only one with the power to control my life. No matter what I experience in life (past or future), it is I who am responsible for who I am today and no one else’s. I believe this for everyone in the world.

I did not want pain killers. I did not want a “band aid.” I wanted him to fix me and fix me as fast as he could. The Ibuprofen did not lessen the pain. I had to return for a follow up visit in order to review my lab work. My PCP told me that I needed to see two specialists for consults. A Rheumatologist (because I had a “high Rheumatoid factor,” whatever that meant) and a Nephrologist (because I had low levels of Albumin in my blood work and he thought that it might be exiting my body through my urine). He wanted me to do a 24 hour Urinalysis in which I would have to be confined all day at home so I could collect my urine for that day and then drop it off at a lab. Boy was I irritated! I almost did not follow through with anything because this was NOT what I came to the doctor for. I thought all these tests and doctors he was sending me to was unnecessary and he did not even fix the problem that I came to see him for. In the meantime however he did readdress my pain as I brought it up again and ordered tests. It has been a long time since then so I do not remember if at first he ordered both a CT Scan and later an MRI, or if it was just one of them. Again nothing was found.

It was not until I was talking to a friend who actually thought it sounded similar to something she had. We discussed it in detail and it seemed like we had figured it out. I might have gallstones. I asked her why none of the imaging tests had found it and she told me that only an Ultrasound could detect gallstones. I was ecstatic with the hope that the    answer was finally found and this pain was curable. All I needed was my PCP to order an Ultrasound and I would be set, life would be pain free! I was shocked when my PCP was not very happy about what I presented to him. He immediately got defensive, reacted as if I was trying to self diagnose myself erroneously, and refused to order the test for me. I was crushed, among other things. (I did end up talking that first Rheumatologist into ordering the Ultrasound for me on that initial consult, even though he was very hesitant and tried to refer me back to my PCP).  After getting the results of the Ultrasound back, I presented it to my PCP and we proceeded with finding a surgeon and I eventually was able to have my gallbladder surgically removed. That was one of the most wonderful things ever. To just get down to the source of pain and remove it forever.

In the meantime I was following through with everything else my PCP had advised me to do. When I went to the Nephrologist (Kidney Specialist), he told me that indeed Albumin was filtering out through my kidneys which did not sound like it was a good thing. He wanted me to do a kidney biopsy to see exactly how the Lupus had affected my kidneys. He gave me a prescription for Zestril (a blood pressure medicine) and said it was to help reduce the amount of Albumin that filtered through my kidneys. More extensive research ensued after I arrived at home and more questions flew through my head like a hurricane.  At this time I was taking Zestril and Plaquenil. You probably already know by now what Plaquenil is. From what I came to understand was that it was a medication that suppressed one’s immune system (again in the hopes to reduce the amount of damage that Lupus could potentially have on or within one’s body). But with that came the risk of becoming susceptible to sickness and a body that could not fight this sickness adequately nor efficiently. All of my research severely depressed me. All I could see was that there was no cure for either disease. All the Doctors could do was give me medication in an attempt to minimize the inevitable damage and hope to prolong my life; but in the end I was going to die. (I do not want to frighten you, I just want to be completely honest about how I felt throughout this time in my life. Many of you may find that you felt similar to how I did or maybe the exact opposite. I just want you to know that if you are scared, have the same questions or feelings, or came to some of my conclusions, that you are not alone). I was disheartened when I read somewhere that some people with Lupus only lived 10 years after being diagnosed, I believe this was an outdated source even at that time. I thought I would die by the time I was 30. I just turned 40 years old in January of this year.

I knew I had to stay out of the sun for various reasons along with reading that sunlight can stimulate the immune system which was something I knew I did not want. I was tired a lot. It was not regular or “normal tired,” it was more of a constant fatigue and pure exhaustion that no one seemed to understand or cared to understand. Sometimes even breathing, walking, a simple movement, or talking seemed like such effort. I felt truly alone as I came to realize that there were not a lot of people that I could talk to. No one existed in my life that knew what I was going through or could offer support. At first I turned to some of my family and friends and many of them did not even seem to try to understand and sometimes would say things that hurt my feelings as they implied that it was all in my head and I was not really “sick” (as if I was making it all up), accusing me of having a low pain tolerance (as I started to experience different types of pain throughout the progression of the disease), sardonic comments like “You are always sick,” or “You are always tired” (implying that I was trying to get out of an engagement because they thought it did not interest me or making the comment because “it’s true”). A “doctor” that my sister met at her work place even told her that it was my fault that I got Lupus. I was so frustrated back then and felt even more alone. So after researching all that I could, I turned to support groups in the form of free Internet web forums for people with Lupus. I found that I could only research so much about  the “science,” medicine, and diseases but what I really wanted to know was how Lupus could affect me in the real life. I thought that by reading about other people’s experiences with the various diseases and stages of the disease, I might find out exactly what was in store for me. It helped to an extent, at least I learned what others had gone through, however our experiences can be drastically different.

The results of the Kidney Biopsy was that I had Membranous Glomerulonephritis (some refer to it as just Nephritis or Kidney Nephritis). I believe my first Nephrologist in Las Vegas said it was Type V but again that was 13 years ago. My Nephrologist that I go to now believes that I have Class IV or Class IV & V combined as that was not documented on my previous medical records that have been sent over and we have not repeated a biopsy since. My Nephrologist at the time prescribed me high dosages of Prednisone (that I took for an extended time) as I was having a bad Lupus flare (where the Lupus was very active and still attacking my kidney). The Prednisone was another immunosuppressant drug that is used to treat diseases like Lupus and also helps inflammation among other things. I was really sick back then for a few years. I had to miss work a lot on leaves of absence and had to go to the ER several times. I felt like a guinea pig as I went through innumerable tests (more imaging tests where I had to drink gross stuff like Barium and what not that would make me gag and almost throw up or scans with contrast); drawing blood work all the time with a handful of vials; a Colonoscopy, a Spinal Tap that went wrong where I ended up in the ER because of the worst longest headache in my life because spinal fluid was leaking after the procedure; the Kidney Biopsy; the Bone Density test which showed that I had Osteopenia in my lower back and spine from Prednisone use)… I felt poked and prodded, the medication made me feel horrible. At one time I even wondered if the medication was worth prolonging my life. I ended up with five doctors (I know some people have more). My PCP, Rheumatologist, Nephrologist, Neurologist (for my Migraines, and more tests from him which came back with no answers), and a Gastroenterologist (who “diagnosed” me with “IBS” which to me is just a general term that they throw at you because they do not know what is wrong with you). With him, I felt dismissed yet given a lot of medication, some of which had bad side effects. I felt like a Pharmacy. I was 27 years old and was going to “old people” doctors with a medicine cabinet full of medicine! It was sad when the employees at the Pharmacy knew me by name.

At the time I was working full time, attending college full time (unless I was sick then I would have no choice but to miss work and/or school), and I felt like I was going to doctors full time. One day my Nephrologist told me that he wanted to change my medication. Instead of taking Prednisone he wanted me to start taking Cytoxan which he said was a “form of chemo therapy.” He told me that with the side effects I probably would lose my hair and would be infertile, never being able to have a baby of my own. I longed for a baby like nothing else in the world, just waiting to find the perfect person, wanting our son or daughter to have a perfect family life and a loving father. I asked him if the Cytoxan treatment was absolutely necessary and my only option; or could I continue with the Prednisone and see if I got better. If not, then as a last resort I guess I would have no choice but to start Cytoxan. He did not object so we continued what we were doing. Looking back now, I wish I had paid more attention to my labs or known what more things meant. In the end, I did most of my research on definitions of diseases and medications, what my prognosis could be as there ended up being an overload of information out there, things I did not understand, frustration, and no cure. Some of the information seemed to almost contradict other information, a lot were outdated, a new medication/ treatment had not come out for over 40 years (a new drug finally came out in 2011 which was over 50 years since the first and only drug was approved by the FDA). My doctors did not have answers to my questions or symptoms I was experiencing. The standard answer became, “It must be your Lupus.” Just that. I eventually stopped asking questions or seeking answers as there seemed to be no answers and there was really no way for me to know what would happen to me.

It was a tumultuous time, like a storm that I liken to a hurricane because hurricanes have an “eye” where everything calms down. And the severe Lupus flare ceased to the point that eventually I was officially, according to my Rheumatologist and Nephrologist “in remission.” I do not remember how long this rough period lasted, if it was two years or longer.

I want to leave you with this until I return… there are so many labs that I would have paid attention to if I knew what they meant (especially which lab was for my kidney function), so many more things that I could have done to make life better for myself, and I know a lot more information now (even though it might only be considered “a lot” in my own mind) that I find to be useful.  The bad times will come but good times will follow.  A lot of it is how you perceive the disease and your relationship with it. I know it is trite but it is a phrase I have only recently heard that I have adopted. “It is what it is.” Quite simple and true. If nothing can be done to change the fact that we have Lupus, why fight it? Why stress ourselves out only to make ourselves more unwell? Appreciate and be grateful for even the smallest things in our lives, even that beautiful rainbow, flower, or butterfly you may have seen; maybe a newborn baby’s laugh for one moment soothed your heart; whatever it might be, just relish in those moments too. I do not mean to sound like “Oh, flowers, butterflies, peace, and happiness will cure all.” But it does help. Music helps. At one time (including recently) I forgot how music can lift one’s soul, make me forget if only for the moment, and I will sing loudly even though I cannot sing and enjoy every single second of it. It took me a long time to get out of my depression and to start to think positive thoughts. It is still an ongoing effort. It is true that a lot about life is the way that we perceive it and the way that we choose to live it. What comes our way in our lives is not always in our control but the way we see things in our life and the attitude we adopt is.