When you feel defeated, remember where you started

I remember this day as if it were yesterday, even though it happened almost ten years ago. The fact that I can remember this day so vividly is what constantly reminds me to appreciate life; every moment of every day, because you never know what is to unfold.

It was spring during my grade eight year of high school. I remember experiencing incredible stomach pains, it felt as though a knife was being stabbed into my abdomen and dragged around in circles. It came and went in waves and after being in a fetal position for hours, I knew it was time to go to emergency. Both my parents were out of town, my mom was in Vietnam and my dad was in Toronto. My parents separated when I was ten, so both my parents traveling became a normal occurrence during my teenage years. Once I arrived at the hospital with my aunt my pain only got worse. After being admitted into the ER, the doctors immediately suspected that I had appendicitis; they kept me off food and liquids in preparation for surgery. They were just waiting on my blood work to come back before confirming the diagnosis and starting surgery.

After a day in the ER and no markers in my lab results that showed signs of appendicitis, the doctors were quite taken back. They told me they did not know what was wrong with me and they were moving me to a longer-term unit at Children’s Hospital, and that I should expect to be here for a few days. At this point, I was pretty scared. I was only fourteen and staying in a hospital with my aunt who barely spoke english and who made it very clear she did not want to be here anymore than I did.

I got my blood drawn 3-4 times a day, the nurses would even wake me during my sleep to draw blood. On average, they were drawing anywhere from 15-20 tubes a day. During this time my stomach pain still persisted, I was on a lot of morphine to mask the pain. After five days of ongoing blood tests, different doctors coming in every hour to poke and prod at my stomach, and immense abdominal pain, it finally came.

My hospital room went from being cold and dismal to full of doctors and graduate students, in what seemed like a heartbeat. I remember seeing at least eight different faces in my room. They said my blood work was consistently showing abnormal results; I had a dangerously low platelet and red blood cell count, and a very high amount of white blood cells. My platelets and red blood cells were so low that the doctors would not let me leave my bed in case I bumped into something and bruised myself, they said I would bleed to death. Finally the diagnosis came. It was the first time I had ever heard of the word ‘lupus’. The doctor said they had very strong evidence to believe that I had lupus. It is crazy to think a decade ago I knew nothing about lupus or its existence, and now it is all I know. He continued by telling me lupus was an autoimmune disorder and it was something I was going to live with for the rest of my life.

My heart completely stopped. I did not react. It was all just too much for me to process. How could I come into the hospital with severe stomach pains and leave with a chronic disease? I just did not understand. To be honest, I don’t remember much after that. I must have blocked everything out because I did not want to believe it.

What I thought was going to be a quick trip to the ER turned into a two week stay at the hospital. I was put on very high doses of steroids to get my blood count up before they said it was safe to release me. I had missed two weeks of school, none of my friends or family really knew what was going on, I lost 15-20 pounds and returned to school looking sickly thin.

The first year of my diagnosis was the toughest year of my life. My whole life changed overnight and I was thrown into a world  of medical terminology I had never heard, I was doing blood work every other work, and seeing doctors and specialists weekly. The high doses of steroids I was on continued throughout the summer in hopes to get my lupus into remission. I went from being 105 pounds to 130 pounds over the course of the summer due to my medications. The steroids increased my appetite ridiculously, I was eating all day and my portion sizes had tripled. I was depressed and had absolutely no motivation to do anything about my weight gain and diet. I started my grade nine year of high school looking like a completely different person. I was the biggest I had ever been, my face was puffy and round, and I had terrible acne. I barely recognized myself. I had lost me and who I am. I came back to school only as a mere shadow of myself.

The next year I spent trying to learn everything there was to know about lupus. I wanted to be knowledgeable enough to go through this alone. I went to all my specialist appointments alone, I did not want anyone else involved. Like I have said in previous posts, when I started this blog a year ago that was when I finally let my family and friends in. This was the most they had known about my disease in ten years. I made myself believe that if I couldn’t do this alone, I was a failure, that my lupus controlled me and that I wasn’t strong enough. I can’t remember how many nights I cried myself to sleep to the point I could barely breathe or open my eyes the next day because they were so swollen. At such a young and naive age all I could obsess over was why me? What did I do to deserve this? I had this mentality for at least a year after my diagnosis. Anytime anyone would ask me about my lupus I would either breakdown or shut them out. Emotionally I just couldn’t handle explaining it to people. I felt as though every time I talked about it, it made it more real.

I never imagined I would be where I am today, both mentally and emotionally. I never thought I would have the courage or strength to share my story with my family, friends, and strangers. I honestly thought I would be doing this alone for the rest of my life. I never wanted people to think I wasn’t strong enough, or that my lupus was an excuse for anything. Through all my experiences in the last ten years, I have learned the true meaning of strength; it is the ability to face adversity with perspective, appreciation, and mindfulness. To know true strength is to be able to let yourself be vulnerable at times and to lean on others when you can’t find the strength within yourself. It takes more strength to get past your ego and self-pride then to face adversity alone.

Starting my blog has been the most freeing, rewarding, and eye opening experience I have ever had. I never could have imagined how much I would take away from this journey. I t has connected me with my loved ones and supporters in a way I never thought possible. I appreciate every aspect of my life and every obstacle I have overcome. It has made me the woman I am today and for that I am forever grateful. I always remind myself that there will always be someone out there who is in a better and worse position than I am. I have so much to be thankful for.

I wanted to write this blog piece today because people always ask me how I can be so positive about my health, as if it never affected me. Trust me, I went through a very dark, wallowing stage where I shunned everyone out. I have gotten past that now and am empowered to share my story and see it with a positive and optimistic outlook. Thank you to everyone who has given me the strength and courage to be open and share my life for the benefit of others, and most importantly myself.

The Tears That Will Never Dry Up

I have had Lupus since I was 14 years old, almost nine years now. It takes a lot for me to cry about my health or situation. I mean, I cried endlessly in the beginning when I was first diagnosed, but after that I vowed to never feel sorry for myself, or to cry again. These moments are few and far in between that I can remember the specific moments; when I was diagnosed, when I was hospitalized for flare ups in the early years of my disease, when I diagnosed with Nephritis, and more recently while I was on the natural medicine and off my steroids. In the nine years and with all that I have been through with my Lupus, that was the first time I had cried from the physical pains of my disease, that was when I knew I had to stop the natural medicine and get back on my steroids. Now the reason why I am sharing this is because I had an experience today that really shook me emotionally, and brought me back to feeling vulnerable, as if I was just being told about my Lupus for the first time.

Today I had my six month check up with my Rheumatologist. I had lots of new things to discuss with him, because he wanted to know about my experience with the natural medicine and where my health is now. After I explained how the last 4-6 months have been, he is happy I am back on my steroids. He asked me how I am doing and if I had anything I was concerned about. I mentioned to him I have been having extreme difficulty with my sleep pattern and fatigue levels, and that I was recently involved in a car accident, and am unsure if it is Lupus related or injury related from the accident. One week, it took me 2-3 hours to fall asleep; I would be tossing and turning for hours so frustrated and beyond exhausted. Now this week my fatigue has really kicked in and my sleeping regime is the complete opposite. I have been going to bed around 6pm-7pm, and sleeping for 12-13 hours every other night. I have had to miss work too, because I just don’t have the physical and mental energy to go to work. He reviewed the lab work that I have done since going vegan and revealed that my hemoglobin levels have gone down, and that my diet change may be a contributing factor to my fatigue. I am at a count of 100 for my hemoglobin, when the normal range is 120-150. He did make an effort to tell me that a low hemoglobin count could be due to diet or lupus related, so I will be doing iron deficiency testing with my next month’s lab work. We then reviewed my urine collections and the amount of protein in it; my Neurologist and Rheumatologist are frustrated that I have been on my kidney medication, which is a very strong steroid,  for a year now, and it still has not stopped my protein loss completely. The plan is to now increase this steroid again, and if it reacts negatively with my liver, like it did the first time, we would try a new stronger steroid. Like I mentioned in my first post, treatment is a constant battles of drugs, at varying doses, seeing if there are any negative side effects, and then changing them if there are. I left the appointment feeling very meh about everything. I know ‘meh’ is not a real word, but I don’t know how else to explain how I felt. I just felt so helpless and careless at the same time.

Now I was out for lunch with my mom when I decided to go see her pharmacist to get my medications refilled. I usually go to London Drugs, but the lineup is always so gosh darn long. Plus my mom’s pharmacist is Vietnamese, so it’s nice that he can explain things to her more effectively than I can when it comes to my Lupus. So we walk in and she hands him my prescription, and he says to my mom “oh wow you are starting all these medications at this age??” And she goes, “oh no, this is for my daughter.”

The way he looked at me said it all. It was a look I was so used to getting. I hated that look. It was the look of sadness and pity.

After a brief pause he says “oh wow. I’m so sorry for you. The types and amount of steroids you are on are extremely harsh, it must be very serious.” I looked at him and said “I have Lupus.” He then asks “what have they said about your future?” To be honest, I was speechless. I have never had anyone ask me that question before. I replied, “I mean I just keep taking new drugs and more of them as new problems arise.” He replied, “and has it been getting worse since you have been diagnosed?”, and I said “yes it has.” His last remark was: “well I can only pray it gets better for you with these steroids, otherwise you are looking at more severe treatments like steroid IV injections, or chemotherapy.” At that moment my heart sank completely. I don’t know why. I mean, this wasn’t news to me. The possibility of more severe treatments is something I have always been aware of, but for some reason today it really hit home. I guess, because I have had Lupus for so long now, I sometimes even forget I have a disease. It is when I have experiences with people who find out for the first time, that it brings me back to that day I was fourteen, and alone in the hospital where I was told I had Lupus.

Today has been a complete emotional roller coaster. I had intended on writing a vegan recipe to share with you all, but I couldn’t produce that blog piece with so much weighing on my mind. I realized this was the reason why I made the blog, to share my experience with people, however raw and emotional it may be at times. One thing I know my family and friends can attest to is that I always try to be as positive and optimistic about my health as possible. Talking to the pharmacist today really just put things into perspective for me. Today he just reminded me about the truth-that I am only twenty-three years old and on some of the harshest steroids out there, and that I am suffering from kidney dysfunction. It makes me wonder, what will my health look like in five-ten years? Experiences like this one are just a reminder that Lupus is something I have to struggle with for the rest of my life. Most days I am strong and occasionally think about my health, nothing beyond my regular pains or taking my medications. Some days I am an emotional wreck, feeling discouraged and hopeless. Today is one of those days, and I thought it would be valuable for people to see that I don’t always have a brave face on. Even after all these years, certain experiences can bring me back to the day that changed my life forever.

A Brief Pause

The last few weeks have been a complete whirlwind of emotions, events, and discoveries. I have been tested and pushed to my wits end entirely: physically, mentally, and emotionally.I have had such conflict with myself, in what I want now and what will come to be.  I started along this path of natural medicine and veganism, assuming this would be one long straight path. I mean- I did a lot of research and educated myself as best I could with the resources I had available to me. I wasn’t going into this completely blind. I  never could have anticipated the path I was on would turn into a bendy and windy road that had no clear direction. I am at the point in my journey where I am experiencing the worst symptoms of my Lupus that I ever have in the last eight years. My arthritis has gotten out of control and is completely debilitating. I cannot brush my teeth, wash my face, or even lift a cup on my own. I struggle to sleep at night, because the pain keeps me up. I can’t roll over in bed, or even pull the blanket up if I feel chilly. I have hit complete bottom in my journey. I am at the stage where I am physically unable to do my basic routine, and get through a normal day.

It is at this point I have to throw the towel in.

I have endured so much pain in the last month, it is honestly unbelievable to me that I didn’t crack earlier. It is now time that I listen to my body, and not choose to be naive or selfish in my treatment plan with my Lupus, because I want to experiment. At the end of the day, as much as I want to find a natural cure for Lupus; I do have a real and serious chronic disease. That is a fact that I cannot overlook or make light of.

Please know that this is an extremely difficult decision and realization to come to; it is definitely the most humbling experience I have had. I have cried countless tears, had major breakdowns, and was pushed to the edge more than I could tell you. It was not an easy decision and not something that sits well in my mind and heart. I am extremely stubborn, prideful, and an overachiever in every aspect of my life. My friends know too well that when I set my mind to something, I am committed beyond the means of normality. This experience has really shaken me and made me realize what you take away from an experience is not strictly black and white – not just a success or failure. Once I set my mind to something I have to come out in the end succeeding in whatever it is. I do not accept failure or excuses, and I am my toughest critic. I am the individual who will put all her eggs in one basket, give it 150%, and come out accomplished. I do not want this to come across in a condescending or arrogant tone, but that is what my young adulthood life has consisted of. I commit myself fully to something, whether that be a new job/career, education, or hobby, I work extremely hard, persevere, and come out conquering what I set out to do. The natural journey I started three months was absolutely no exception to that. I went all in; I went completely vegan overnight and began natural medicine almost immediately. The reason why I do everything whole-heartedly is because I never want to live with an ounce of regret. I will only accept a failure in life knowing I did my absolute best. This experience has really changed the way I had initially viewed this journey and life. My goal was to reverse or cure my Lupus naturally, if that was achieved then I succeeded- I was a winner. With everything that has happened in the last few weeks I have done more self-questioning and self-reflection than I ever had.

I had to sit down and really think, “What was my end goal?”. Was it to be off my steroids? And at what cost? At the cost of experiencing pain every second of every day?

I had an appointment with my Nephrologist earlier this morning. It was an extremely eye opening meeting. She showed me my lab results for my kidney function over the last year. She explained when I was first diagnosed with nephritis, my protein levels in my urine were ten times the amount of a normal person. It took about a year and new medications for my protein levels to go down by a third, but I still was not in the healthy or safe range yet. Then we looked at my lab results from last month. My protein levels were at the worst they had ever been, and were twenty times higher than a normal person’s. This news was startling. I mean- I knew I was experiencing the worst pains I ever had, but I didn’t know internally that my body was experiencing the same thing. She explained that if I were to continue on this path and leave my nephritis untreated, it could do permanent damage to my kidneys. This could lead to treatments such as dialysis or transplants a few years from now. She was extremely honest and reassuring when she explained that her goal and my Rheumatologist’s (Lupus doctor) goal was to not have me on steroids forever. They are well aware that there are negative side effects to the long term use of these drugs. They do their absolute best to treat me, without overexposing me to drugs. She wanted me to understand that when my Lupus is flaring I need those drugs to get it under control. An untreated flare could manifest itself and I could be ten times worse than when I started. She explained that once my Lupus was in remission and stable for at least two years, then obviously they would want to taper the steroids and eventually get me off. This was very reassuring to hear that my doctors were looking forward and planning for the future. She explained that at the end of the day, if my Lupus is flaring and I do not treat it with the proper medications, it will only backfire and cause more damage to me and my health in the future. What resonated the most with me is what she said about the likelihood of me having children. If I am not healthy, I will not be able to carry a baby, or even become pregnant. I need to consider my future and what the consequences of not treating my Lupus might look like.

Do I want to take the all natural path and experiment for now, with the risk of damaging my kidneys and possibly other vital organs? Or do I take my steroids until my Lupus is at a better place, and pray that one day I will be in a good place to healthfully get off my medications?

I left my appointment today being able to make a better educated decision about my treatment plan. It was hard to hear the real facts and results of my tests, and to be told my Lupus was not doing well with the natural medicine. But it was exactly what I needed to hear; I needed affirmation that I had hit rock bottom and I had to do something about it. I have made my decision and plan on staying on my steroids until I get my Lupus under control. It was not what I had intended I would be doing at this point in my journey, but it is the right thing to do. I have to respect my body and look past my pride, and just understand that this is what I need to do for the time being so I can live contently. I am not viewing this as a failure, or even that I am giving up. I have chosen to be responsible and look at the bigger picture. I need to do this for my future, and as impatient as I am, I need to be patient with my treatment and my Lupus. I have come out of this experience having learned so much about my Lupus and myself – that is something I will never forget. I am happy to say at least I tried to take the initiative to do something for my Lupus; it was a completely empowering feat. I don’t think this will be the end in terms of natural medicine for me, but for now it is a brief pause in a lifelong journey of treating my Lupus.

Confessions – Part I

This week I was faced with a moral dilemma. One I thought I would not have to face for a few months…informing one of my many doctors of the new treatment plan I had created for myself, and how I had stopped taking all my medications and steroids altogether.

My next appointment was with my Nephrologist (my kidney doctor) in November. I was hoping by that time I would feel a lot healthier and fully adjusted to the natural medicine; where I could be sharing only all the positive changes that have come about from my natural approach. Unfortunately I received a call from her earlier this week informing me that my latest lab test results showed a large amount of protein in my urine. To give you a bit of background information, my lupus affects the lining of my kidneys-this is called nephritis. In a normal functioning kidney it filters out strictly waste like urea and ammonia. Unfortunately in my case with nephritis, the walls of my kidneys become inflamed where they begin to excrete needed protein from the body into the urine. Loss of necessary protein due to nephritis can result in several life-threatening symptoms. Since discovering my nephritis I have been on medication to help build the lining of the kidney,and reduce the amount of protein being excreted. So when I received this call from my Nephrologist telling me my protein levels were high again, I was deeply saddened. I had stopped my medications for only two months and my body was already telling me I needed them to function properly. My doctor asked me if everything was alright and if I felt well.  I was completely caught off guard by her phone call-I was not mentally prepared to tell her about all the changes I had made, and how I had stopped taking my kidney medication. I was scared to find out how she might react; whether she thought I was absolutely crazy for doing this, or just irresponsible and stupid for stopping my medications.

So…

I didn’t say a thing.

She wanted me to repeat the lab work again, and if the results were the same she was going to change my kidney medication. I left the phone conversation feeling scared, disappointed, disheartened, and clueless as to what I should do. Do I tell her about the new treatment plan? And if I do, what if she tells me my nephritis is getting worse and that I need to take my medication? I was not prepared to give up on my natural medicine just yet. I felt terrible for lying and not being honest right then and there, but I was not prepared to tell her my secret.

I gave myself a few days to recoup and think about how I was going to deliver this information to her. I wanted to be prepared to explain, educate, and prove to her why this natural approach was the right thing for me to do. When I finally had the conversation with my doctor, I have to say I was completely thrown off by how supportive she was. She explained to me that it wasn’t uncommon for Lupus patients in my age range to be looking at alternative medicine knowing that they would be on medications for the rest of their lives.  She thanked me for being honest with her and having the courage to tell her. She supported my decision and wanted to follow me more closely in the next few months. She said that currently she isn’t too concerned about me getting off my kidney medication, if I really wanted to. She is more worried about my future, and what no kidney medication could manifest to five-ten years down the road. She is concerned that if damage is done to my kidneys because of the absence of medication, it may not be reversible. She also mentioned how my state of health five-ten years from now will dictate if I am able to conceive and healthy enough to carry a baby. Her last point really resonated with me.

It has always been a dream of mine to be a mother. I knew at a very young age that I wanted to have babies and lots of them! If I were to find out in the future I was not healthy enough to carry a baby-I don’t know what I would do. I would be beyond devastated that the great gift of life that women could give, I could not. There is no way I can imagine my life and future without kids. A lot has been on my mind this week, whether or not to continue my journey knowing what my Neprologist said. I will be seeing her in two weeks to discuss what the effects of abstaining from my kidney medication might look like, and a new treatment plan that I will morally feel good implementing.