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.

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