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.

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6 thoughts on “The Tears That Will Never Dry Up

  1. Hi please hang in there and try your best to stay positive through this difficult situation. Are you spiritual or religious in anyway? If not what’s the harm in asking the universe/God for help? And if you already are stay patient as all things will fall in place.
    I’m gonna go on a whim here and ask you if you have heard of the pH miracle diet, it’s a diet all based on the pH levels of food and our body. Low pH foods (acidic) are toxic for our body and high pH foods (basic) are what’s good. It is also known as the green diet as it will mostly consist of leafy green vegetables which are basic, and avoiding meats, dairy, and fruits which are acidic. According to this theory an acidic environment is what leads to diseases and inflammation. Therefore creating a basic environment in our body is the goal in treating and preventing all diseases. My knowledge is very limited. I was told about this through a coworker who suffered from extreme colonitis which caused him to constantly drop 50 pounds when things got bad and would spend weeks at the hospital . He mentioned being on really hardcore steroids things like you’ve mentioned which compelled me to write this post. At the moment he’s in his early 60s and said his health went south when he was in his late 40s, striking at a vulnerable age. Anyways he tried this program because he was hopeless and didn’t want to be on such strong medications, and it worked for it him. His doctors were astonished and couldn’t explain why. Anyway I’m sorry to ramble on but the books is called The pH Miracle by Robert Young. I hope you can just give it a read. I was trying to use it for my acute IBS symptoms and for me the ideas make sense. Although I haven’t had any serious and chronic diseases to use it on. I just wanted to give you some strength from a stranger and to encourage you not give up on your fight, and after veganism there are hopefully other natural pursuits to fight this Goliath. God bless you and I hope you keep up the fighting spirit.

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    1. Wow, thank you for your support and compassion. I am spiritual and do pray, more often when I am need, although I know it should be more of a regular routine. The story you shared with me sounds incredible. I will definitely look into the pH diet. Thank you so much for taking the time to share your advice with me. It’s people like you that make me feel so incredibly appreciative of life, and that there are still people out there who show compassion to complete strangers. Thank you.

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  2. Hey Chaufa,

    This post was so heartbreaking to read. Had no idea you are going through something so tough. I admire your strength and resilience through all of this. Keep fighting. And yenno what, it’s totally okay to break down when you need to. My favourite thing to tell myself is: Why do I crumble? To piece myself together again.

    I can relate to how you feel since I also suffer from a chronic disease. I’ve had eczema since birth and it’s been the most annoying thing. A lot of people scoff and think it’s nothing, like it’s insignificant compared to other diseases, but for me, it’s been a total life-changer. I can’t enjoy the simple things other people take for granted like swimming, water fights and for girls specifically, wearing shorts and dresses. My entire life revolves around this. It dictates what I eat, what I wear, what I do and how I feel about myself. It even affects my mobility, some days I can’t even move without cracking and bleeding somewhere on my body. I had it under control from age 5-19, then recently my skin has been constantly flared up. This month it got so bad that I started to creep up on my neck and face. I’ve had enough and I am so done with steroid creams. I’ve also turned to the alternative and trying to battle my eczema through diet.

    I don’t know enough about lupus to shed any light on the situation but you mentioned that you follow a vegan diet so I would suggest monitoring your folate and B12 intake (might be linked to your low energy and fatigue).

    Best,
    Connie

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    1. Thank you so much Connie for your support and compassion. It’s during that time that you find your strength and perseverance.

      Oh wow, Connie. I am so to hear that. I can’t imagine the pain that could cause you. I am sorry you have to struggle with that. You are experimenting with alternative creams? And what kind of diet changes are you making?

      Yes I do take a B12 supplement, but I do know if I don’t keep that up I do feel the affects.

      Thank you Connie for taking the time to reach out to me, means the world.

      xoxo,

      Chaufa

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  3. Hello! One of my very close friend has had Lupus Nephritis for 13 years, since she was 7, and I chanced upon your blog post while reading up on it! (It’s difficult to find great ones like yours that talk about feelings; all others talk more about technical details of lupus. I’d get texts from her at 3AM in the morning because she’d been tossing and turning in bed, but still fail to fall asleep. So she would end up resorting to consuming really strong sleeping pills to finally get some rest! Her kidneys are at the stage before kidney failure, and it breaks my heart when she gets sad about her illness hindering her from doing so many fun things! Despite her condition, she still keeps a very open mind, and has a really postive outlook on life in general! She is in her 2nd year of dental school, and though it’s difficult for her to juggle her studies and getting ample rest, she still manages well, and I’m really proud of her for that! The question that your mum’s pharmacist asked you, about the future, I applaud how brave you were sharing your honest opinion with us readers on it! You are an inspiration, and I’ll definitely be a more frequent visitor here! 🙂

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    1. Hi Amanda,
      I am so sorry for the late response, I have been so consumed with school and work that I unfortunately have not been able to tend to my blog. Thank you so much for sharing your story about your friend with me. Every day I am taken back when complete strangers reach out to me to share stories, or to show their support. I am in awe of the compassion that we all share for each other. You sound like a wonderful friend, and I bet your friend,who has Lupus Nephritis, feels very blessed to have you in her life. You are doing everything a friend can do, show support and be there for her when she needs to decompress. Thank you so much for taking the time to share your kind words and support, it truly is invaluable to me.

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