by Laguna Lupie
If you go online and google “mild lupus” chances are you are not going to get far in that search. Except for some people asking “what is mild lupus?” in some threads and other sites saying lupus can start out mild and over time become worse, there is not much information on the topic. But I do remember reading a lupus patient in one of those threads who said that you don’t get much information on the milder forms of the disease because those with mild lupus don’t really write about it online, they are out there just being ok, hence the dearth of information on the topic. And I thought to myself, how so true! Lupus sounds so terribly depressing online because most of those writing about it are the ones with a severe form of the disease, those with mild lupus are not bothering to tell their stories. So for people like myself who are newly diagnosed with lupus, it just all seemed like a death sentence of sorts. But my point here is, it need not feel that way all the time. There are many out there who are currently living their lives with a milder form of the disease and we don’t always have to feel lost and hopeless and sad. There are good days that are worth celebrating despite having lupus.
Lupus is called the cruel mystery. There is no single progression for it and there are as many manifestations of it as there are patients. It can start out mild and worsen progressively or it can be an acute and severe form of the disease which becomes milder or even goes into remission. I myself have encountered different versions of lupus ranging from the severe kidney lupus of a close friend’s sister which killed the patient within two months after first exhibiting symptoms of kidney failure and milder forms of the disease, such as another close friend’s mother, who has had the disease for over twenty years and has undergone bouts of severe lupus with a smattering of remission years in between. My doctor even told me he has a lupus patient in her 70s with no symptoms whatsoever except one – she’s gone completely bald. She has alopecia (falling hair) from the lupus and that’s it! So you see, it’s all different and there are no cookie cutter molds for lupus.
I am nearing my first year of having lupus and so far symptoms have been limited to the skin (persistent rashes) and the joints (rheumatism mainly in the wrists and my knees) and I have constant fatigue so I don’t work on our business the same as before. Aside from the prednisone burst I took November of last year when I was in a lupus flare three months after giving birth to my son, I have had no steroids and am only on plaquenil. Admittedly, the plaquenil took a few months to take effect but once it did, my hair stopped falling off and my wrists got better (I could write and brush my teeth again with no help!) I still have the fatigue though and my doctor said, the everyday tiredness, the lack of energy, may never go away. But if my lupus stays the way it is, then I should have a lot to be thankful for. And I am, I am thankful every day.
I am on a quarterly check up schedule with my rheumatologist, every three months with my lab results in tow (cbc, urinalysis, c3 complement) I visit Dr. Lorenzo at the Asian Hospital in Alabang and so far, for this year, the visits have been uneventful.
I was supposed to go on benlysta but I already told you in a previous post what happened to that benlysta dream of mine so right now I am only on plaquenil, which is pretty good for lupus. I have a few supplements that my doctors prescribed (Vit. D-3 given by my rheumy to help with the fatigue, multivitamins and fish oil as well as melatonin for sleep because ever since I was diagnosed with lupus, my once fitful sleep went away and hasn’t come back). And that’s it!
Next on my list are accupuncture sessions and a visit to a famous traditional Chinese herbalist doctor from Ongpin. I got permission from my rheumy and my kuya for these alternative methods of treatment. They both basically said the same thing – as long as these alternative meds don’t interfere with my current regimen, then it’s ok. My rheumy just added that I should tell the TCM doctor from Ongpin not to prescribe herbs with steroids in them because I am currently not taking any steroids.
With regard to exercise, since I have arthritis, my doctor said low impact exercise would be best such as swimming or I can just walk regularly to stay active. I went further of course and bought promo vouchers to a new yoga studio in Nuvali, Sta Rosa nearby. I have yet to start on the yoga but that is definitely on the list.
That is the story of my “mild lupus” and I’m sure there are many others out there who are on remission, not even on any meds; or just like myself, with minimal medications and overall A-ok. I can’t deny that I still have fears about the disease worsening, I still have dreams about protein in my urine and things suddenly turning bad (hence, the insomnia of late). But I can’t live my life being afraid all the time.
I am writing this now because I want other newly diagnosed lupus patients out there to know that there are many versions of lupus and it’s not always so bad all the time. I don’t want to give false hopes either because I know full well that things can go from “ok” to “really bad” to “dead” with this disease in no time at all. But only to share with others that this is my story and I am still not sure how it will unfold but I am in the midst of my “good days” now and I am taking full advantage of these days while they last.