Ruth Aine coming to terms with SLE/Lupus

Unless she tells you, you would not know that Ruth Aine has SLE/Lupus. Aine herself has only known she has the condition a year.

She remembers, “July 3 is exactly a year since my SLE/Lupus diagnosis.”

Before July 2018, the ebullient Aine often found herself dealing with, “Unexplainable weight gain, fatigue, light headedness.” Conditions that would strike any time abruptly cancelling any plans she had long looked forward to.

The Bweranyangi High School alumni says, “There were so many things I couldn't do that others could, that made me think, oh it's just me.”

This was especially difficult for a pretty, teenage girl who often found that, “I was always in a sweater.  Had fatigue issues.  In O'Level, I had anaemia - which I still have. Bouts of malaria.  Then A'Level I spent about 6 months on antibiotics because of Brucellosis.”

Life, before her diagnosis, for Aine was always dominated by stopovers at a doctor’s. “For longer than I can remember I had a low immune system.  I was in and out of clinics for times on end.”

She had to give up on many of life’s little pleasures for the sake of her health. A daughter of the West, from the land of milk and honey, “I remember having to leave dairy products as a student because I had unexplainable Brucellosis.”

“My diagnosis was confirmed July 3, 2017. By then I had been on steroids for a long time, intermittently given by a doctor who didn't say what they were.”

Aine confesses, “I don't remember how I survived through July, but I do remember my resolve to live my best life yet and be the best that I can ever be in this one shot of Life.”

“First course of treatment was to get me off steroids.  And that meant  getting weaned off them.”

She explains, “That led to heavy weight gain for about two weeks  as I got off steroids.”

The switch of medication was a delicate, gradual process. This is how it went about, “I then started an immunosuppressant called Sulfasalazine.  This would be my primary medicine against Lupus.  I also had to take vitamins. These help to strengthen the body.  Remember  the main drugs cause depletion of certain minerals in the body because they suppress growth of your immune  system.”

Her dietary needs were now geared toward buffering her body against the shock of change in medication. She had to ensure she had enough, “Fish Oils and Glucosamine for bone and joints. Iron Supplements.”

“I added Turmeric capsules because curcumin is every good for inflammation.”

Inflammation of the joints was a constant discomfort because, “At the start of taking Sulfasalazine my ESR (inflammation markers)  were at 45. That's not very high,  but that's abnormal.  The usual range for women is under 20.

She had to be patient, “The meds take awhile to kick in. About two to three months before you start to feel the effects.  For me it was less fatigue, good sleep.”

Although she could sense and see a change, Aine was not content. “In October I consulted for the first time, a Rheumatologist (Ugandan Doctors Living in Namibia) who advised that I change course of treatment.  I started antimalarials.  Instead of Sulfasalazine.  High dose of Hydroxychloroquine.  I held out until December.  That's when I started the change.

Antimalarials have been known for long to help with Lupus.  And that's what is recommended for preservation of body organs.  I don't have any donor involvement yet and so we have to keep it that way.

SLE/Lupus has taught Aine to be the first and last line of defense for her own health. She dedicates hundreds of hours to teaching herself as much as she can find on her condition and how to live with it.

She says, “I have learned that I need to read, read and read. Because of my reading,  I came across an Anti inflammatory diet and that's what I have pursued and I feel much better.

I am pescatarian almost going vegan. Gluten, dairy, processed foods etc increase inflammation in the body.

I also avoid night shade foods.

Exercise is paramount. It was so difficult at first because I was in so much pain. I started from walking for 5-10minutes to walking for 60-90minutes.

I have also learned to mind my business and focus on my healing.  I have people in my life  that keep me grounded but even they can't feel what my body is going through,  so I have to mind that and pace myself.”

The diagnosis last year and coming to terms with it has profoundly changed or more accurately enhanced some of her core beliefs about life.

“For me this was an indication that we are different. Our battles are different, so are our paths and victories. We each have a story unique to who we are. It's been an interesting journey so far. I have a fragile but very resilient spirit and body. And that no one can ever take away. More than ever I know my limits and limitations but I am even more confident in my strength as a person and an individual. I am changed.”