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.

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2 thoughts on “A Brief Pause

  1. Thank you for sharing your story and increasing awareness about lupus. I also have lupus. I have lived with the disease for many years and remember how hard it was because there was so little info available at that time (before everyone had internet ;).
    Take care and I look forward to learning more about your journey.
    Estela

    Like

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