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. As a younger person in my family I truly took advantage of my position and always did what I wanted. 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. Even in America, only those Americans take biologics who’re getting insurance by their government, not everyone could afford there too. One can imagine how expensive it may become when those foreign currencies change into Pakistani Rupees. My rheumy told me to take anti inflammatory tablets and physiotherapy exercises first, and if would not get better, I would be left with no other option but Biologics. And I must admit it, I was not that much worried about the treatment/expenses, I was more worried about where was I wrong? Did I do some great sin unintentionally? Why I am facing such terrible disease? I looked back, I was the person who lived life according to my own wishes and will, but I never stepped on someone’s toe, I attained all of my choices by my own efforts. I was the person who always followed “what is right is right and what is wrong is wrong”. I faced opposition, outside my home, thousands of times, its strange that many times my own age fellows became my obstacle, but I never left my rules of life, even when it was meant to be stand alone, I stood. I was never told that I was wrong, rather I was told many times that its so foolish to be so ‘right’. I was strong, stubborn, rebellious, but never took advantage of others. When I found nothing, I called Almighty Allah to help me. And He, the merciful, answered my prayers. I started taking sulfasalazine along with some painkillers and physiotherapy. When I went to hospital for physiotherapy I never chose to sit on wheelchair, I was afraid that if once I use wheel chair I would have to use it for the whole life. It was a very long path from hospital gate to the physiotherapy department; I took support of my mom’s shoulder and walked. With a fractured backbone and the terrible pain in all bones due to AS, I wasn’t able to walk properly. If you are in hospital and on wheelchair no one would notice you as its normal there, but if you aren’t able to walk properly and look weak and don’t use wheelchair everyone is going to notice you. But in doing so, I recovered the fear “oh! What would people think of me”, when I walked everyone stared at me, many times people asked my mom to bring me a wheel chair and they amazed why I was walking in pain when I was at hospital. But I refused. The “fear” was greater than “pain”, I was learning my life lessons. In meanwhile, my eldest brother (who were not told before about my fracture and illness, and was in London, UK at that time) when got to know about my illness and the biologics, he talked to me, he told me that I should go for biologics and I should not need to worry about expenses as it was not my matter to worry about, he told me that it would be his privilege if God wants him to be the source of my treatment. I was stunned. Honestly speaking, I had no idea whether we would be able to bear such expensive treatment or not. At that time, I didn’t know that, AS is a life-long disease. Even my rheumy didn’t told me, she was a nice and caring person, she knew my health conditions, so she never made me horrified of the disease at the initial stages. She told me that I would be okay but it would take some time. 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. Kelly Johnston was the first AS patient I met online, joining her forum brought me much strength. I thought if she could be so courageous and willing to bring hope to people then why cant I survive? I would always be holding a special respect for Kelly. And from those two incidents I realized the power of motivation, to be more specific, the power of “virtual” motivation. Neither my brother nor did Kelly was there with me, but they awakened me from so far. I didn’t start biologics instantly, because I had read on Internet that how poisonous TNFs could be, so I wanted to give therapies a try. 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 took admission in networking course. My brother told me that I should not go towards networks as networks related jobs required long duties, and with spinal disease it might would not be possible for me to do hectic jobs. I was feeling so energetic and I didn’t stop taking networking classes 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. My mom was much worried. Perhaps that’s the only thing which made me to put a curse on AS, it shackled my strong Momma. I could see the additional wrinkles on my mom’s face. The efforts that she was putting as a single parent for the last 10 years had somehow started showing fruitful results to her. My eldest brother and I did Engineering, my other brother has done with MBA, MS & LLB, my sister has just started her PhD, her husband is also a PhD, and they have a very cute baby too. None of my brothers/sister was a graduate when Dad died. Now these achievements were the source of my mom’s peace, but my illness bothered her. I don’t know all of the problems, which she faced as a single parent, but I saw her strong in tough times. And I was seeing her scattering during my illness. That was the time when physically I wasn’t able to move a step, but my mind started jumping and riding. While on bed, I read stories of many famous people on my laptop. What I learnt that every story had “pain”, “sufferings”. Some had physical pain some had mental pain. But that pain did miracles and made them successful on later stages. Now success is a relative term. Too often, we relate success to material success only. To me, as a chronic patient if I show love towards life, and I can smile in pain, and I can make any single chronic patient think the similar way, then I think I am successful. I met so many wonderful chronic patients through these online communities. Today I believe that those speed breakers came into my life because God wanted me to know what life is all about. I realized that life is not all the time about “me”, it’s sometimes about “we”. In learning so, I touched Pure Love and True Friendship, which otherwise might haven’t got my attention. I sensed as if my intuition had become so sharp, everything had become so revealing. I was learning people, their attitudes. Even though my experiences are not so bitter, most of my near and dear ones are supportive and positive, but still there were some people who when got to know about my illness behaved as “aww! Poor unfortunate girl! Facing bad-luck”. I always listened to what they said, but I ignored. I didn’t want to get in arguments with such vision-less people. And I am not that weak who get upset by any of such shameless behaviors, rather I learnt that I should encourage those people who’re facing such negative people. 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. Sometimes I feel these online forums are like Dreamlands, all patients belong to different countries, different religions, different cultures, and yet so united and supportive of each other. Isn’t it a perfect purpose of life for a chronic patient (considering their energy levels)? And of course, not everyone can understand us and many may think that how foolish we are, we are letting others know about us, about our stories, when it is not as such difficult to hide this disease from people. It’s an invisible illness, unless one faces AS complications, it is not difficult to hide from people that you are suffering from an invisible illness. And it is more than difficult to make normal people understand that what a positive impact this illness has made on us that we are so much willing to raise awareness After all such experiences, I became more stronger, more rebellious towards positivity, more stubborn, and more “less tolerant” of fake people. 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 bit of fusion in my right SI.
Again my brother offered me to come to London both for treatment and for Masters degree. But till then I had lost all of my interest in Engineering field, and didn’t want to go for Masters in the same field. I didn’t want to go for the surgery either. I didn’t want to make decisions in haste, I knew life would become more complicated after surgery, so I wanted to avail and try every other possible alternative. There is not every temporary treatment for AS is available in Pakistan. Even today, many of the treatments/medicines, which I read on these online patients’ forums, are those, which I never knew about, not even by name. But I can still count it as a blessing as I belong to a country of very moderate climate. Especially in my city, weather almost remains hot or moderate throughout the year. So I don’t face the additional pain which winter brings to chronic patients. 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 am a strong believer of God, strongly believe that its always the later stages which show that the trust you put in God was “right”, He always plans better for us, only if we have enough patience to wait for the results. I knew that if I would remain positive in those unbearable pain times, then I would sustain everything. So I chose “patience”. Then I visited a Italian Research Center here, I tried homeo meds, doctor gave me separate meds for ESR, Vitamin D etc. The first thing, which I noticed after trying home meds, was the decrement of piercing pain in SI. After few days I was able to walk without support, though was having much pain inside the body, but it was not “piercing”. When my liver got normal then my rheumy gave me steroids. I was taking both steroids and homeo meds, and amazingly they worked for me. I avoided surgery. It is not that I’m afraid of surgery I am so very mentally prepared for it if, incase, I would be needing it at any stage of my life, but what I am happy for is that I waited and tried alternatives too, otherwise the pain was so terrible I might instantly went for surgery if I didn’t keep myself calm and patient. I had learnt smiling in hard times. I consider TNF’s side effect as a blessing too, TNFs’ side effects are so severe, it may lead to cancer even, I am glad I left them. It not only reduced my medications’ expenses to a large extent but I am saved from side effects too.
From June to today, November 13, 2011, I am using those medicines and though I am not very energetic, but my life is back on track now. Today I can proudly say that I lived/live my life the way I want to. I can count thousands of blessings, which AS has given to me, I never considered myself unfortunate. I didn’t chose AS by myself it came to me. What I choose is courage. I try to play my role as a chronic patient whenever I get chance. I am more than willing to raise awareness, it might haven’t brought us a “cure”, but it definitely make many chronic patients to get escape from mental pain. I have written my diagnosis story for Pakistani magazine too. After that, I was invited as a guest speaker at a well-known university of my city to present a presentation on real life challenges and some motivational thoughts. And I whole-heartedly accepted the invitation. I am not hesitant at all to show that I am having an AS, rather I consider these are the opportunities given to me to raise awareness of this rarely known disease. I gave a presentation in front of Master’s level students, and showed them few of SAA’s videos too; I got enough appreciation from them (which, honestly, I wasn’t expecting at all). To me, it wasn’t about the “appreciation”, it was about the “awareness”. Common people have no idea how painful this disease can be, and there is a greatest possibility that they misunderstand chronic patients by judging them by their exterior looks. I sometimes try to put our pain into picture form too, and I love when my fellow patients tell me that these pictures make them easier to tell other how we feel inside. I know, this is a very little effort from my side, but I am happy that whether big or small I am playing my role as a chronic patient. I believe the purpose of raising awareness is not that we want someone’s sympathies. Don’t pity on us. Accept us the way we are, and don’t think that we fake things. This pain is so “Real”.
I am not hesitant to accept that many of my beliefs has changed after having AS, but probably those were not useful at all, what I have learnt now is more precious. The inner peace and stability in my personality, which I am having now, wasn’t there before. I realize that my previously buried passions are important. I realize that there isn’t anything bad in making “slow” progress. I realize that no matter how dark is your situation there is always some hidden door of light, which we only find if we have enough patience to wait. I might not be very practical religious person, but I am developing more and more stronger faith in God. I don’t judge the situation just by their front look; rather I prefer to see both sides of the picture. Till 19, I lived a very lively but careless life. Now I sometimes give my mind the chance to make decisions too, though most of the times I still follow my heart And yes, I don’t underestimate negative people too. Because I love when they try to pull me down and I smile and show my confidence and then they get embarrassed, I truly enjoy the feeling, lol. Those negative people are also necessary in our lives, otherwise we might don’t feel need to stand up for ourselves. And they are entitled to their visions. I am thankful to Allah and to all my loving people who really are a source of my smile, and they mean a lot to me. I am even more grateful to those who became really worried about my health, because just to see them happy, at first, I faked smiles and pretended as if I was okay which later become original. I’ve learnt how to be truly happy. Now, I don’t find it difficult when I have painful times. I just take complete rest and “think nothing”. When pain gets better I don’t slip any single moment to enjoy my life, one of the greatest things which maturity gives you is to enjoy little things in life. My true life has begun now, and I have a very long journey ahead of me. Though my future path is still not very clear, but one thing I am sure about it that it’s so bright I love LIFE, its so beautiful and all what I desire is after 30, 35 year from now I could proudly say “I came into this life to live out loud”.
*smiles* <3 Aqsa! Karachi, Pakistan