A dash of Pepper…

…with a splash of Mint

When shit happens..

Posted by Pepper on October 7, 2016

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.

Advertisements

89 Responses to “When shit happens..”

  1. sayamayas said

    Please consider alternate medicine for this issue. Talk to homeopathy doctors if you have any in your city. Steroids over the long term is a bad idea.

    • Pepper said

      Yes, steroids over the long term are a bad idea. I am hyper aware of this fact and that is exactly what caused me all the trauma.Even the docs prefer other drugs over steroids, though they’re the most effective. But we’ll see how to deal with it.. .Hopefully I won’t need much of intervention. Only time will tell..

  2. sayamayas said

    Sorry you are going through this. I typed the earlier comment before I could gather my thoughts together. Also please check if there are any yoga related solutions to this. I know I sound like some hippie idiot but I do believe that long term solutions should be sustainable and not something that merely treats just the symptoms without addressing the underlying cause. Chin up Pepper. Beneath all your surface anxieties, I do have a hunch that you are quite a brave girl.

    • Pepper said

      Thank you 🙂
      If I could find a solution that didn’t involve such heavy drugs, I would grab it of course. Sadly, from what I read, a lot of people have tried all sorts of things, naturopathy, ayurveda, yoga, etc etc, only to not be able to control it. Ultimately, you can’t afford any threat to your sight so people succumb to the solutions that seem to work.
      Like I said though, I will continue trying to find something natural that works for me, and hopefully will not need any invasive treatments ..

  3. Hi pepper…. I wasn’t able to. Comment on the blog… so here a mail from me…

    Stay strong… take it from a girl who suffered from an autoimmune disorder herself three years back….. I had an acute attack of myasthenia gravis… i suffered loss of speech (yes i went dumb) and my eyeballs stopped moving. Suffered from severe diplopia… double vision that is…. was on the verge of suffering a stroke….

    But, God was kind enough to give me a second lease of life that I thank for each sec, each min, each hour of the day… took me almost a year to restore normalcy in life… and so, am telling you – you are going to be fine…

    When I chanced upon your blog… I don’t know why but I connected with you…. and am still not sure how… but I take it…. we were meant to be blogger friends…

    And be strong. You will b well soon… auto immune disorders test you… but when you emerge a Victor, you will know that this was a phase, a challenge you were meant to beat hands down!

    Get well soon… and keep the candle of faith burning… this too shall pass 🙂

    God bless 🙂

    • Pepper said

      I can’t thank you enough for sharing your story. You have no idea how hugely inspiring it was for me.
      I am also so happy to have a friend who actually speaks from experience. It makes a difference when it comes from somebody who has been there. I will keep the candle of faith burning. Thank you for the encouragement. Lots of love!

  4. Sadhuvi said

    I hope you will get cured soon…Take care..

  5. renxkyoko said

    OMG…. I’m sorry to hear this. I hope and pray everything goes well for you. Be strong , always.

  6. Hi Pepper. Hugs! This does sound terrifying but like Mint said, statistics are just that – statistics. Try not to panic at this point. You’re still at such an early stage, and there’s every possibility and also most likely that its going to go away on its own.

    Sending lots of love and hugs your way.

    • Pepper said

      Absolutely. I know I am at an early stage and as of now I know there is every possibility this will go away on its own. I’ll hold on to that thought. Thanks!

  7. rangili said

    Hugs to you Pepper I sincerely hope that third time will be the charm for you and you will be able to wean off Staying positive may work wonders I know it is much easier to preach than practice but please try

  8. Dude, I have a 60% chance of retinal degeneration and 20% of that degeneration can result in blindness. I will tell you why whenever we meet. Let’s take a deep breath.

  9. Bhavani said

    OMG!!! I am sorry Pepper that you are going through this….never ever heard about this…seriously scary man…and off late you are the 3rd person I know being impacted by Auto Immune disorder. All different issues, it was very hard to diagnose the root cause and was concluded as Auto Immune disease.

    Yes you will be off steroids…I will strongly wish for that…and hope nothing gets worse and your eyes get better…

    Take care…

    Bhavani

    • Pepper said

      Thanks Bhavani! I am not surprised you’ve never heard of this. It is an extremely rare condition. It’s sad though that so many people are being affected by auto immune problems. I’ll send positive vibes to the people you know too. May the world heal 🙂

  10. Ijji said

    Praying for you <>

  11. Aww Pepper a big tight hug coming your way. You will be able to wean off the steroids this time. You will be able to wean off the steroids this time. You will not have a recurrence. You will not have complications. You will NOT loose your sight. You WILL be healthy again.Your eyes WILL be normal again. A big resounding AMEN. You are going into my daily prayers efeective now. Dont worry and have faith. Trust me it can work a miracle 🙂

  12. Bikramjit said

    Damn…

    You will be fine.. have ur medicine on time and take care.. my prayers and wishes your way..

    Take care pepper

  13. Satori said

    I am really so sorry to hear this. I really wish I can give you a tight hug now. Can you check out if any alternative medicine/treatments will work? I just read this, maybe you can try it out:
    http://www.turmericforhealth.com/turmeric-benefits/turmeric-benefits-for-uveitis

    Please take care and try not to focus on the whatifs.

    Love
    Satori

    • Pepper said

      Oh thanks so much Satori! I’m constantly seeking and reading up about alternate therapies these days. I will most certainly be adding tons of turmeric to my diet.

  14. I am sorry to know about this, Pepper. I request you to stay strong in the face of this, though I know it is easier said than done. Big, big hugs! Sending prayers and best wishes your way.

  15. Sending you an email, check your inbox, okay?

  16. no words… just get well soon… and don’t Google too much, it adds to our miseries. take care of yourself, nothing’s gonna happen.. 🙂

    • Pepper said

      Couldn’t stop myself from Googling for a while. Finally over the obsession. You are right. It adds to our miseries and is such a pointless exercise. I’d rather spend that time meditating and taking care of myself.

  17. Wellwisher said

    Hi Pepper, Have sent a very strong prayer to Ganpati Bappa to protect you and keep you and your eyes safe and healthy. Keep sending your strongest prayers to the universe. Everything will be fine.
    Well wisher.

  18. Srishty said

    pepper, get well soon, and do not worry please :/ I am sure Mint and you will come out of this fabulously! just to lift your spirits a teeny tiny bit, i read somewhere about this athlete who got AIDs and said i never asked God why me when I won the medal, so why now 🙂 I really hope you get more strength to come out of this, take care :*

  19. Take care.Hope you get well soon.

  20. Ani said

    This must be so difficult to come to terms with. I went through a similar phase when diagnosed with vitiligo ( auto immunity that causes de pigmentation) 7 years back. Have come to understand a lot about how auto immunity works and how food could be one of the most significant triggers since . Plz look up auto immune protocol – this is a diet that helps a host of AI disease from progressing and reversing in most cases. I follow a watered down version of it – eliminating gluton and nightshades. This alone has stopped progression and am repigmenting without medication ( except for vitamin d supplements, lots of literature linking vit D and AI). Had to share this as I can so understand how daunting it can be when faced with a condition that has no obvious cure. I feel that most AI conditions are lifestyle and food related and once you figure out what your triggers are, you can control it instead of being at the mercy of it. Hope you get to figure out quickly and wish you a speedy recovery!

    • Pepper said

      Glad to know your vitiligo is so much under control. Surprisingly, most docs I have spoken to say that AI conditions are NOT lifestyle related. Some modifications may help but the conditions are caused by environmental factors. I really would like to research more. But as of now I am trying to detox with all the information overload I’ve had..
      Will definitely look up at diets recommended for AI problems though. Thanks! And good luck. May your vitiligo disappear 🙂

      • Ani said

        Thank you! It is a lot of work sticking to a diet like this when you also need to cook for the family. But yes it’s easier to do this than to have an immune response from hell.
        So sorry to be sending more information your way pepper.. This is for later when you feel like researching again (had to send it as someone in the comments has had a remission with uveitis)
        https://chriskresser.com/hla-b27-and-autoimmune-disease-is-a-low-starch-diet-the-solution/
        Sorry to be doing this when you are clearly on an information overload. Reliable, research linked new information is hard to come by and with my raising suspicion that most doctors are not creative enough, nor ahead of recent research had me looking up your condition in some of the sites I frequent. Hope this gives you hope. Tc

        • Pepper said

          Ani, I can’t agree more. Sticking to diets is tough but so much easier than dealing with an immune response from hell. Or even with medications that push you into hell.
          Please don’t apologise about sharing information. You realise you are doing me a huge favour, right? It’s extremely nice of you to to research for me and I can’t be more grateful.

          It’s sad how rigid doctors are in their approach. They’re so unwilling to even consider diets as sustainable treatment solutions. In fact, most of them didn’t even want to entertain my questions about alternate drugs, let alone diet plans. So this research is something we have to do our own since the doctors are entirely in control of the pharma industry.

          I’ve read a lot about the HUGE difference the food we put into our body makes. It’s like a revelation that has been happening. I still need to understood food and nutrition more. Like I keep reading about benefits of low carb and low starch diets, but I need to understand in depth what that diet includes and entails. I’m planning on getting a consultation from somebody at some point. If I may ask, what kind of diet do you follow? And how hard do you find it to stick to it?

  21. yoges said

    I’m sorry that this happened. Hugs to you. If I may, I would like to suggest that you seek second opinion from ayurvedic treatment. There may be some natural remedies that could help. No harm in checking it out. Take care.

    • Pepper said

      Thanks. Appreciate the hugs. Have kept ayurvedic treatment in mind..It’s true you never know what works. I’ll try to not be disillusioned by what I have read..

  22. Aruna said

    Pepper, first of all, stop reading about these too much! Take it one step at a time and one day at a time. Trying to gather too much information will only cloud your intellect.
    Breathe. All will be well.

    • Pepper said

      Oh you said it. Too much of information really did cloud my intellect. Thankfully I realised it in good time. Have been refraining from gathering information available on the web..
      I am getting myself to do some breathing exercises. All will be well, yes. 🙂

  23. POORNIMA N S said

    Hi there … I have been an avid reader of your blog for sometime now, love your writing …but never happened to leave in a comment! Sorry abt that. But this post left me deeply saddened. Very sorry to hear what you are going through. Please be positive and am sure you will sail this through, hope you recover soon, my best wishes to you ..God Bless!

    Cheers
    Poornima

    • Pepper said

      Thank you Poornima. Don’t apologise for not commenting earlier. It means a lot to me that you decided to step out today to wish me well. This is what matters most. 🙂

  24. Rubaru said

    Delurking after ages. Here is wishing you a speedy recovery, Pepper. Praying that third time does get lucky.

  25. Hi,
    I have been a regular reader of your blog, but have never commented before. Just hang in there and be strong. You will recover faster than you imagine !

  26. Oh God! Take care Pepper! I will pray that 3rd time is the charm and you wont need eye drops ever again!

  27. Stuti said

    Oh I’m so very sorry to hear that Pepper. I hope it gets better very soon… I can completely imagine your paranoia. oxo

  28. Deepa said

    sorry to know you’re going thru such a tough time sweetie. Been wanting to write to you for ages but lots going on here too. Will def. do one of these days. Meanwhile, do everything in your power to get better ok. Take it one day at a time and don’t hyperventilate when you read alarming things on the net. Remember, there are outliers always and you will fall among those. Those that get better spontaneously and with time and effort. I recall you wanting to get into some sort of mindfulness based practice a while ago and I know time is tight for you right now but how about you start with just 20 minutes a day of say chi gong or tai chi done via a youtube video just before you go to sleep or late evening. I’ve started that with V to calm him down after a day of school, classes and what not and it’s working very well for him. M also joins him most days and it works wonders for him too at end of a stressful work day.

    Meanwhile, happy dussehra to you, mint and your folks from all of us here.

    • Pepper said

      Please do write to me soon? I am not sure but I think I did email you a couple of months ago and there wasn’t any response. Was wondering how you guys are doing.
      I’m trying to include some bit of meditation in my daily life now and it works to a great extent. Should try Tai Chi. Have heard a lot about it from many people..
      Hope you guys had a good Dussehra. Hoping you have a bright and happy Diwali. Lots of love!

  29. B from Fremont said

    So sorry to hear this update Pepper. Never heard of these terms till I read your post. Gosh, scary to know whats out there. Hang in there. Hopefully, your situation will be manageable. Sending lots of positive vibes your way. You will come out of this a lot wiser and with a better perspective. Good luck.

    • Pepper said

      Thank you! There are so many nasty things out there that we’ve not heard of. Kind of scary to think of how vulnerable we are. Anyway, these things do add to your perspective. They certainly did to mine. Thanks!

  30. Aarti said

    Take care dear . Be strong . Fear tortures us more than disease sometimes . You will recover soon .

    • Pepper said

      How true is that! I have been haunted and tormented by this fear so much. The actual ailment, however painful, was a walk in the park.
      Glad I realised my stupidity 🙂

  31. Pepper! Things are going to be ok, and while I have no proof for it, and I am pretty sure of it. Good things happen to good people, and while this is an unnecessary bump on the road, it will pass. Yes, you get to rant and vent as much as possible because that is a right, but also cos when it is all fixed and fine, you can read it and laugh about it.

  32. Dee said

    (((((Hugs)))), you poor thing! This is curable, my neighbor had this too, she had just landed a new job and she is in IT, so staring at the screen was a pain, plus her eye drops made her eyes blurry for a long time. She got through this, it took her about 3-4 months. She is fine now. I feel for you girl. Please take care and do not get depressed, this is definitely curable and you will fine in no time.

    • Pepper said

      Thanks! I finally know of one more person who had this. Did your neighbour have bilateral or unilateral uveitis? I know it’s such a random thing to ask, but would it be possible to talk to her?

      • Dee said

        I will definitely check with her and let you know, she also was on chemotherapy drug. I did not mention because I didn’t want to upset you more, but I just read your latest post. Hang in there, this too shall pass, this too shall pass. Trust me on that!

        • Pepper said

          You said she ‘was’ on chemo drugs. So I’m going to assume she was able to wean off.. I am still going to look at it as a hopeful sign.
          Yes, please check with her and let me know if she is comfortable talking to me? I will be very grateful. Thanks so much.

  33. I am not sure how to respond Pepper..this sounds very painful and scary.

    All I can do is to join you and chant/pray/hope – “Wean off steroids. No complications. This shall pass. Deep Breathe.”‘

    Big Big {{Hugs}} dear…please stay strong .

  34. Boiling said

    So sorry to hear about this. I am not sure what would be helpful to you at this point. Hope you get well soon.

  35. seema3 said

    Whoa, I also read the link you attached. really life altering. Take care.Praying for the best

    • Pepper said

      Thanks 🙂 There are *many* such terrifying stories on the web but I must remember that the stories that actually make it to the web are far scarier than the ones that don’t. And who is to say I won’t fall in the less scary bracket..

  36. D said

    If good wishes work- I pray from the core of my heart that you get rid of this problem ASAP!! Lots of hugs, and even more prayers and good wishes…take care!!

  37. Alice Sebastian said

    Hi Pepper, Though I have been reading your posts for a long time, its the first time I am commenting here. What made me do that is your post on your eye problem. It sounds scary. If you are interested in trying out alternate medicine for your uveitis, you may try this Ayurvedic eye hospital in Kerala http://www.sreedhareeyam.com/. Feel free to contact me if you need any help. I stay 30 minutes away from this hospital. I took treatment from here for my dry eye problem and I found it effective. Hope and pray you will get well soon………..

    • Pepper said

      Read about this hospital elsewhere too when I was doing my research. Sounds promising. Will bookmark this and will definitely contact you if I happen to go there. Thank you so much for sharing. Really appreciate the effort 🙂

  38. D said

    How are you now?

  39. anisnest said

    Take care pepper.. Hugs..

  40. K said

    Hi Pepper! I really hope you recover very soon. Take care.

  41. Anu said

    Big hugs Pepper! Stay strong, believe and I’m sure you can be weaned off the steroids. I’ll pray for you…
    Take care…

  42. anuja said

    Take care and hoping that you are able to taper down the steroids. Best wishes and be strong.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
%d bloggers like this: