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.