Making it count

After all the gloom and doom of my last few posts, I must write about all that has been making me happy. And truth be told, there is so much of joy around me, it’s hard to not let it soak and consume you.

I feel it every night as Mint and I walk back after dinner from my parents building to our own.  The air is infused with the sweetest scent of Raat Rani, also known as blooming jasmine, night blooming cestrum, lady of the night and so on. I take deep breaths, so I can take some more of that sweet, woody scent with me as I pass by. I feel so grateful our apartment complex has such beautiful and heady blooms.

I can smell Diwali in the air. The weather is cool and pleasant, making my spirits soar. Taking a walk in the evening is such a pleasure. The cool breeze is like a soft balm. People have begun to drape strings of lights around their windows. The atmosphere is festive. I’m so excited. Every year we have a huge family get together during Diwali. It has been a tradition that none of my family members miss. This year, I actually hand picked the fabric I wanted to get stitched. I now have a pretty pink and gold  salwar kameez that I am waiting to wear. I’m looking forward to the sweets, the ranglolis and the clay lamps.

In the past few weeks, Mint and I often head out to an early morning breakfast at different cafes before we start our day. It helps immensely that we’re both in a position to work from home often. The week day breakfasts are awesome. For starters, we have fabulous food and I love tucking in. The avocado and feta stuffed crepes, the dark chocolate and banana smoothies, the chia seed puddings, the egg coquettes and benedicts, the warm rye breads, the croissants, waffles, granola parfaits, muffins,  dips and cheeses, aah. I love breakfast dates. So far, Le Pain Quotiden, Indigo and Suzette are our top favourite breakfast destinations. I feel so blessed when Mint and I start the day with laid back conversation and terrific food. Here are some pics of our recent breakfast plates ..

I know I lead a spoilt life. I have so many people to pamper me. As long as I am living right next door to my mama and papa, I know I will not truly grow up. Which of course, suits me fine. They indulge me beyond words. And if that wasn’t enough, I have Mint to contribute. I had just walked out of a head bath the other day and as he was drying my hair for me, I thought of how much a of lazy bum I was. Surely, I could dry my hair on my own. But the fact that I have him and that he willing does these things for me is so awesome. I took this very quick blurry pick as he was drying my hair so that I would remember and feel thankful for these moments of my every day life.

My eyes. They’ve behaved so far even as I tapered my drops to 3 times a day. So much to be grateful! From this Friday, I lower the dosage to 2 times a day. We’ll see how it goes, but irrespective of the outcome, I know good things happen to me.

Walking with the Lord..

I stayed away from the blog, my piling emails and other media platforms for a few days, but today, I had to come back here to say a big Thank you! I have gotten so much of love and support, I am overwhelmed. I will reply to every comment and mail I’ve received in a few days time. For now, I just wanted to let you know how much it means to me.

Since I didn’t want to talk about my problem and then leave behind a suspenseful silence, here is a short update. When I last posted, I was using steroid eye drops around 6 times a day. This past week, we moved it to 4 times a day and my eyes haven’t flared. For this, I am extremely grateful, but I have to keep in mind that while the doctors tapered my eye drops, they added an oral steroid to my treatment plan. I have to take this 3 times a day. Prednisone, in case you care to know. The taste of these tablets is extremely bitter and makes me go bleigh every time I force them down. I am currently tripping on Prednisone but that is keeping my eyes quiet.

The plan is to taper my eye drops to 3 times a day in the next few days and let it stay that way for another week. We basically taper every week until I finally stop the drops. The oral steroids will however continue for a another month and a half atleast. Constant use of this awful steroid makes you gain weight and gives you what is popularly called a ‘moon face’. But you know what? I don’t care. I don’t mind being fat and droopy faced as long as I am healthy otherwise. And hopefully, I won’t get fat or droopy faced either.

What does the future hold? I still don’t know. I’ve spent a lot of time reading up about this disease and with the progress we’ve made in the field of medicine, thankfully very few people lose their sight because of this. What it takes in order to preserve your sight is however, another story. There are several people who are able to stay flare free ONLY as long as they are on the steroids. The moment they stop the steroids, they flare. Like we all know, living on steroids is not sustainable. So they put you on other heavy medication that suppresses your immune system for a few years.

In India, if you are unable to wean off the steroids and stay flare free, they put you on Methotrexate directly. If you don’t know this, Methotrexate is the most common drug used in Chemotherapy and comes with many side effects. It is also the drug they use to induce abortions. I think I started feeling depressed when my doctors told me what was in store for me if the steroids didn’t work. They said I’d have to be on the Methotrexate for years on end. A cold fear gripped my heart and I was unable to feel any kind of joy. My thoughts followed the same trail on a loop. How could I be affected by an illness as horrible as this? I mean, people fall sick. They catch a cold and develop a fever. Some have it worse and go on to get diseases like Jaundice and Typhoid and Malaria. They’re sick for a few weeks but they come out of it. Nobody I know was facing the probability of being on a chemo drug for years. Not at my age.

And then finally I felt the fog lift one day. I felt totally ashamed for thinking the way I did. MANY people have it worse. How could I be so blind? Heck, I have Oregano in my own family to learn from. He’s suffered such a great setback and has yet managed to turn around his life.Even after his transplant he lives on a cocktail of deadly meds, and he is still happy and well. Why was my situation so terrible? I figured my biggest fear was the mere idea of being put on Methotrexate. So I decided to educate myself further about its usage in treating Uveitis. From what I read, they put you on a very low dose of the drug. Nothing like the dose they use to treat cancer. So the side effects are far fewer. Moreover, you take a small dose every week and most people are able to live a very normal life.

How bad does that sound? Not very, right? I mean, that is the worst case scenario and if that is the chosen plan for me, I will bow down to it with dignity. For now, I still have reason to hope that I will NEVER need it. I just have to wait for the moment of truth though. If I am able to stop the steroids and stay flare free for 3 months, then they will consider me to be in ‘remission’. I have no way of knowing until I crawl to the end. Here is to quiet eyes for me.

PS – The title is a famous song we used to sing in our school assembly. I find myself humming it in my head a lot these days. Lift up your hearts, for you are walking with God..

When shit happens..

I’m not sure from where to begin. I might not make sense, but I know I need to write. The past few weeks have been such a roller coaster.  I had mentioned an eye infection in my previous post. Sadly, what we thought was an infection is actually a disease called Uveitis. I ended up having recurrent inflammation in my eyes just as I tried reducing my dosage of the steroid drops. The moment I try to taper my dosage, my problem is back!  I’ve seen several ophthalmologists in this time, and while my diagnosis has been confirmed, the approach to treatment seems to differ slightly. I’m still trying to grapple with what has happened to me and cope with my fears. Before I talk about other things, let me present some fun facts about this disease.

• Uveitis is an auto-immune disease. I think I know enough about ‘auto immune’ problems thanks to Oregano’s kidney failure, which like you can guess was also caused by an auto immune problem. Auto immune disorders occur when your own immune system begins to attack and destroy healthy cells and tissues by MISTAKE because it stupidly believes the tissue is foreign or infected. If I could, I’d scream at my very idiotic immune system and ask it to behave itself. Like seriously dude, can’t you learn to distinguish between good and bad cells? Please stop attacking my eyes for no reason. Leave them alone.
• I have bilateral Uveitis. Which means, it has struck both my eyes. This is bad news.
• I have Anterior Uveitis. Which means, it affects only the front of my eyes. Yet. This is good news. Posterior Uveitis comes with many more complications.
• In about half of the cases, Uveitis is not an isolated disease. It is commonly associated with the presence of a gene called HLA B 27. Diseases that are associated with Uveitis include ankylosing spondylitis, rheumatoid arthritis, Behcet’s disease, sarcoidosis, amongst others. Which means, I have to accept I am vulnerable to a host of nasty illnesses and be very vigilant. Fun, right? As of now I am praying to the Gods that my Uveitis is idiopathic.
• Even the treatment for Uveitis comes with it’s own complications. The first step in treatment is the use of steroid drops that go into the eye. However, constant usage of steroid drops is not a sustainable long term solution. Persistent usage of steroids in the eyes leads to glaucoma and cataracts. As of now, my eyes are heavily dependent on the steroids and I am using them 6 times a day! Have been doing so for the past several weeks. When I tried reducing my dosage earlier, my attack was back with a vengeance and I went back to using the steroids 6 times a day. I am going to start tapering it *very slowly* from next week again and I pray that I don’t get hit by the problem again.
• In some cases, the steroids are unable to control the problem. You then move on to immunosuppressive drugs that have to be taken life long or for years on end before you go into remission. And in some stubborn cases of Uveitis, even these drugs don’t work, in which case you welcome the beautiful methotrexate. Methotrexate is a common drug used in chemotherapy to treat cancers. We all know the side effects chemo drugs come with. I know I am talking about the worst case scenarios, but since I have not been able to break out of the steroid cycle so far, who is to stop my mind from running away to these lousy possibilities.
• Even if you manage to treat one episode of Uveitis., odds of it reoccurring are very high. In most cases, it does reoccur. Sometimes after 2 months. Sometimes after 2 years.
• And finally, the stats that give me sleepless nights. “It has been estimated that uveitis accounts for about 10% of the visual handicaps in the western world and up to 15% of all cases of total blindness in the United States. Legal blindness develops in at least 1 eye in 22% of all uveitis patients and in about 23% of all who require intraocular surgery. Visual acuity (VA) loss to worse than 6/18 in at least 1 eye occurs in 35% of patients with uveitis”

Okay, so now do you hear me say WHAT THE HELL? A QUARTER of the people go blind?? ONE THIRD go partially blind?! Dear Lord, please help me. I know I have been acting like a complete idiot. I’ve been paranoid to the extent of being insane. I always considered myself to be a laid back person when it came to dealing with illnesses that struck me. But I guess it all changes when you consider the possibility of sight loss. I’ve been waking Mint up in the middle of the night and telling him I don’t want to go blind.

My zen and calm statistician husband tells me he doesn’t agree with those stats. He says there are too many variables they may not have accounted for. What was the purpose of the research? What was the sample size? At what stage of the disease did those people get treatment. Etc. Etc. In short, he thinks stats can be twisted to suit your agenda. He thinks I am being silly by worrying about sight loss at this stage. For all we know, I might even be able to wean off the steroids this time (3rd time’s the charm?) and never have to face this nasty problem again.

On the other hand. I may not recover and may be stuck with this dreadful thing for a long time. I mean, I don’t really trust my luck to be honest. This is a rare disease and affects only about 0.38% people in the world. That means the odds of it happening to people are less than 1%. And of course, I had to fall in that 1%. I told Mint I want to scream and say ‘Why me?’. He asked me who the question was directed at. Um. Good question. The truth of the matter is that there is no explanation for such things. The universe is governed by randomness.

Like I have mentioned, this isn’t fun to live with. When my eye is ‘Active’, I hide from all possible sources of light. I feel rather silly to be wearing my sunglasses at home and other closed spaces. I go about telling people I have an eye problem even when they don’t ask. Just because I feel stupid wearing sun glasses in an already dark room and feel like I owe the world an explanation. Using the drops every 2 hours is a pain. There are days when I pray for nightfall because the sunlight during the day is too unbearable. Yes, a lot of vampire jokes have been made by Mint and Oregano.

What lies ahead? Well, I have blood tests lined up for tomorrow. I will have the reports by Monday. I will also step down from using the steroid drops 6 times a day to 4 or 5 times a day from the next week. I hope to be able to taper the steroids every week. If I am unable to wean off without a flare this time, then my ophthalmologist is going to refer me to a rheumatologist and we will consider other oral immunomodulation therapy. I hope I don’t need something strong to shut my immune system up.

Meanwhile, until I know what’s going on on, I repeat to myself. I will be able to wean off the steroids this time.  I will be able to wean off the steroids this time. I will not have a recurrence. I will not have complications. Deep breathe. Repeat.

PS – If you would like to read another patient’s personal account of Uveitis, go here. I could relate to a lot of what has been said there. He/she has really voiced my fears and emotions well.