Aqsa Rajput

Living with Ankylosing Spondylitis is the duration where the whole marrow of my life exists. Before facing this physical pain I had faced the mental pain when my dad died after getting two times paralyzed, when I was 13 years old. Difficulties after that saddest incident somehow gave me strength to fight against real life challenges, but I got the real courage and understanding of life after I was diagnosed with AS in March 2010, at the age of 23.

Unlike others, I have no childhood pain symptoms. According to my mom, I was very active and mischievous during my childhood and rarely got ill/sick.  I fearlessly followed my heart. I was the person who used to start dozens of the things at the same time and then I truly enjoyed handling them when I felt stuck.  Till the age of 18 I did attend many workshops related to handicrafts, fashion designing, cooking etc. while I was the student of pre-engineering, but arts was my passion. It was very feasible as well as enjoyable for me to attend many classes (besides studies) and then a long walk. I did attend yoga classes too, and my body’s flexibility was amazingly noticeable among all students.

In 2005, I came to Islamabad (Pakistan) for studying. In 2006, for the first time I started feeling fatigue and milder back pain, then jaundice caught me. My physician said that was all due to jaundice, he gave me glucose drips so that I could manage to appear in my second semester’s exams. Even when I recovered from jaundice the fatigue and pain was there that shrank my extra activities. In 2007, I got privilege to perform a holy pilgrimage Hajj, and for performing Hajj I had to walk a lot to perform all rites of the religious event. Even though I performed all rites by myself but I felt terrible fatigue when I performed rites. When I got back to home, my rib cage had extreme pain, I visited physician again, this time my chest x-ray showed bit markings on my lungs which was the indication of disease named Bronchitis. I took medications for that and after few months got recovered from bronchitis, but the bone pain was still there. I visited many doctors but never diagnosed with any bone related disease. Every time doctors gave me multi vitamins and told me to take good diet.

From the end of 2008, I was started feeling severe pain, which got worse over time. Till 2009, I had lost much weight and was getting pale, this time my physician suggested me to see a hematologist as she thought I might be having some blood related disease. I visited a well-known hematologist, who, after listening all my pain stories, asked me to get a bone marrow test done. Only those who have been through this test can understand the pain of bone marrow biopsy. But I was hoping that after that painful test I would surely get a clearer picture why I was having pain for a long time. But when I got the reports, doctor told me that my marrow was all okay and I was just having a deficiency of vitamin B-12. Again, I was asked to take enrich diet and was told to take injections of vitamin B-12 for about six months. My mom was paying thanks to God that I was not having any worrisome disease, but I was dying inside. I was unable to tell doctors that how terrible pain and fatigue I was having. My sister and brother advised me that I should watch some motivational & positive movies, because I think so much that I am having pain that’s why I feel pain, and when I would start thinking that I am not having pain, it won’t be there. And most of the time we ended up at quarrelling, because I told them it wasn’t in my mind, it was real, and they always forced me to give a try to some positive movies and books.

I was in my last year of Engineering. My mom and brother wanted me to take a break from study, they wanted me to cease a semester and give a complete attention to my health. That was the time of so much uncertainty, I was upset, I was unable to explain my situation, and I was sensing that sooner or later I would definitely be diagnosed with something terrible. So all I wanted, at that time, was to complete my degree at any cost. So despite their opposition I came back to hostel for the completion of my degree. In January 2010, just before my final semester’s exams, I had an accident. Apparently I got no injury, though the pain levels increased so much, but I didn’t pay attention to them, I thought, “what’s new in it? I am in pain for several years”, so I just doubled the number of my pain killer tablets and concentrated on my exams. After spending a terribly painful month, when I was done with exams and got back to my home I was unable to walk properly. I visited an orthopedic surgeon and then my backbone X-rays showed that I had a minute fracture in my backbone during that accident. I was given new medicines, but the pain was increasing day by day. And then, finally, I visited a rheumatologist, and after so many X-rays and blood tests, I was finally diagnosed with a rarely known disease, Ankylosing Spondylitis, in March 2010. At first, I was horrified to know that I am having a bone fusing disease, but after some time I released a sigh of relief, at least the “pain” got “name”. It was like as if I was anonymous before and now got name. It was not the end; it was just the start of “My” “Life”.

My rheumatologist told me about Biologics (TNF blockers), I was worried to know that they were so expensive, and I was just the fresh graduate. My rheumy told me to take anti inflammatory tablets and physiotherapy exercises first. I called Almighty  to help me. And He, the merciful, answered my prayers.

I started taking sulfasalazine along with some painkillers and physiotherapy.

Then I read a lot of stuff about AS on Internet and then I got the whole picture of it, I joined many online forums.

I did try electro-therapy, hydro-therapy, gymnasium exercises, and aqua exercises. They gave temporary relax to my muscles but I didn’t notice any major change. I tried to learn swimming too, as they say its best for AS patients, but I was hardly able to float, I don’t know whether it was due to fracture or was due to AS, I wasn’t able to swim though I tried a lot.

So finally had to take Biologics.  I started from Remicade infusions and then I had to switch to Enbrel injections. TNFs are magic. I feel as if my pain had reduced upto70-80%. My life had got momentum again .I was feeling enthusiasm until I faced the magic’s side effects in April 2011. My blood reports showed severe liver inflammation. My rheumy stopped all medications, the reports were that bad that I wasn’t even given ibrupen for pain. To find out the reason why liver got inflammation, Rheumy asked me to see a gastroenterologist. I was not taking any single tablet. I was again in pain, this time the pain was ten times more than the pain I had before diagnosis. The pain was so piercing in my SI that I wasn’t able to walk few steps even. When I went to hospital for tests, I wasn’t able to walk. Life had brought me to wheelchair, but this time I was so strong. Though the pain was so terrible, but till then I had realized the actual worth of life, and I was more than willing to “Live”. Gastroenterologist asked me to go for a liver biopsy.

Unless the actual “reason” of AS would be known, it would be considered that it’s all a game of “Fate”. No one knows that who would become a victim of AS. Question is, why fate put few of us in such painful circumstances? No matter how painful the disease is, its still not life-threatening. God didn’t make it “life-threatening”, its probably because God wants us to show the world how to value life with all such pain.

 

I went through liver biopsy in May 2011, and it showed that inflammation was due to drug infusion. My rheumy said that she couldn’t give me biologics anymore. The pain in my SI was so piercing and unbearable, she suggested me to so for surgery, the joint replacement. That was the only option I was left with. My MRI showed fusion in my right SI.

I faced greatest pain from April to June. My further reports showed deficiency of Vitamin D and lack of calcium. My ESR level was 121, and platelets were high too.

I went through right hip replacement surgery in April 2016. AS also affects my TMJ.

Despite all painful experiences, I developed stronger faith in God, and believes that something wonderful must be coming for us in the life hereafter.

 

Aqsa!

Karachi, Pakistan

 

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2 Responses to “Aqsa Rajput”

  1. Dear Asqa,
    Thank you so much for sharing your story with us. I am at lost to find the words that are in my heart. Your spirit is so beautiful that it shines all the way to Texas, USA. I admire your courage and strength and in awe of your faith. Stay strong. We will one day, one letter at a time, and one picture at a time change the worlds view on Ankylosing Spondylitis.
    Sincerely Cookie

  2. A beautiful story, my Dear Aqsa.

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