Stopping Steroids: Drugs and Drama

I’ve been on a low dose of steroids for many months now. It’s a special one for Crohn’s called Budesonide aka Entrocort that’s supposed to work directly on the terminal ileum where my Crohn’s is, and so it’s much better than taking stronger steroids, like Prednisolone, which have worse side effects. The funny thing is, I seem to have all the usual bad side effects of steroids while I am on the lowest possible dose of Budesonide ie 3mgs. I have a hypersensitivity to many medications, in fact, except maybe anaesthesia… my dental work requires maximum jabs as does my colonoscopy sedation… I have woken up before and asked weird questions in the middle of procedures…. But I digress…

The side effects of Budesonide, as experienced by me, include bloatedness, weight gain (the kind that makes you look like you have a beer belly or are constantly 7 months pregnant!) mood swings, headaches, and nausea. I have never liked being on steroids of any kind, but sometimes I have had no choice. It’s very frustrating not to have a choice, but life is full of choice-less moments when one has to just do the necessary or needful.

The tricky thing about steroids of any kind is weaning off them. You cannot stop taking them suddenly because the body will go into adrenal insufficiency. Basically, the steroids have been providing the body with cortisols that the adrenal glands usually provide, and since the body is receiving them from another external source the glands stop producing the cortisol altogether. Stopping steroids then places the body in the dangerous position of not manufacturing cortisol, and not receiving any either, and this leads to adrenal insufficiency which can be fatal.

I once tried going off Budesonide cold turkey. I was going to Bali for a wedding, and I felt so bloated, and fat and I just wanted to get off the steroids and feel and look better (yes, I was being mega vain!) so I stopped taking it, just like that. I felt great the first 2-3 days, and my tummy went down. Then I began to feel joint and bone pain and muscle aches and my lower back hurt so badly it was an agony to move. I felt feverish and had chills at night. I lost all apetite and was even throwing up. I couldn’t get out of bed to go see my doctor even but after 2 days of feeling like this I dragged myself off for blood tests and to see him. We finally pinned all the symptoms down to my stopping steroids suddenly. If I had been on high doses and had stopped like that I could have put myself in severe danger of falling into a coma, and eventual death, especially if anything stressful were to happen to my body, like surgery or an accident. Cortisols help us react and cope with stressful events and without them we simply cannot function.

I went back on the Budesonide with the agreement that I would wean off it properly rather than stop cold turkey. Weaning off slowly allows the adrenal glands time to kick back in and produce cortisol again. It has resulted in some measure of side effects but not as severe as when stopping completely. I look forward to being off it altogether, but I do hope the Crohn’s can stay under control without it. If it does flare up badly then I may have to go back on Budesonide and live with my strange body shape for a lot longer. Boo! :(

I would like to lose that swollen belly, I would like to have fewer headaches and less photo-sensitivity, and I would like to be on as few drugs as possible. This is the dance I do with my doctor all the time. I try to get away with as few medications as possible and he worries that I may flare up. We go back and forth trying to find the right balance for that moment in time and hoping it will keep me well for the longest possible time.

I am grateful for my doctor who is a good friend and a genuinely caring person. I just hope he can put up and keep up with my dramas… he says it keeps him on his toes, I say somebody has to be drama queen, and so we get along. :)

Thanks for reading,

Pav

Countless Weddings and Several Funerals

Somehow as one grows older one seems to have so many more weddings to attend and almost as many funerals to go to as well. While one is a happy occasion the other is an overwhelmingly sad one. Occasionally in between these life events would be the most joyous time of all… the birth of a baby into the family or to a friend. Almost as if God gives, God takes away, but then He gives some more… and the cycle of life continues.

In my younger days I found it easier to attend every wedding I was invited to, be at every funeral I was connected with, visit with every new parent that I knew in my life. I loved the feeling of being a part of something larger than myself. I loved that my kids knew that there were these major events that sometimes involved their attendance, but many times did not, yet they knew the importance of them. Sometimes I reveled in helping out a friend in need. I would cook and deliver a meal, or visit an ill friend in hospital, or sit with someone in mourning… I gave more freely of myself, my time, and my energy… and I enjoyed it all from the depth of my heart.

As I have aged, and continued living with Crohn’s Disease I have found that my energy levels are lower, and I seem to have so much on my plate with 4 kids, my part time work and studies and just managing a household that I no longer enjoy weddings, no longer am able to emotionally manage attending a funeral, no longer reach out to those in need… not entirely because I do not want to, but because I struggle with pain on a daily basis and it makes it very hard for me to do those things. Sometimes I have resorted to selecting the events I will and can attend, and simply declining to attend others, partly to preserve my energy, partly to preserve my sanity.

I am sure I have offended people in the process. People who wanted my company or my presence, hopefully because they really wanted me, and not seat fillers J. People whom I knew but hardly met with in the course of the year would be upset by my lack of attendance at their important life events. I think these people do not know that living with chronic illness drains the very life out of a person every single day… and by nightfall I am a limp rag. I have dragged myself to events… only to find myself suffering from a migraine, or having to be on my best behavior when all I want to do is slump in a chair and sleep… how not to offend people and still be true to yourself and your needs? It’s a very tall order indeed.

I often surround myself with people who understand my needs because I find it less stressful. I find it so good to be on my own when I am in pain or have had a bad night’s sleep that these days I have become quite home bound, entirely by choice. Is this a passing stage in my life? Will I break out of this and rediscover my old self – the one who kept in touch with people and knew their needs, and actually went out of her way to help others?

Part of the problem also lies in dealing with the feeling that haunts me sometimes… the feeling that I reach out to many, but very few seem to reach out in return to me, and sometimes I wonder if this is because I am too naïve, too giving and too easily hurt and not managing my own expectations. The challenge is to keep giving and not expecting anything in return… but it has become harder for me as I have aged. Perhaps it is because I have endured considerable hurt this past year especially with my father’s passing, that I find I do not want to go out on a limb as I once did, but prefer to curl up in a corner with a book, or a movie, or my computer, and often all 3... and let the world go by.

I enjoy snuggling with my younger kids, and making small inroads into the world of teenagers and preteens… and this alone takes up a lot of my time… unbelievable but true! I enjoy quiet moments with my dear husband after a busy day and all the kids are in bed and we watch tv together or talk about our house project, or work, or some issue with the kids. I enjoy watching old classic movies on tv when the kids are at school, with a cup of tea and a slice of something to tide me through the crazy hours when they are all home until they go to bed…

More insular, more introspective, more alone, more with the ones I love the most, and who love me in return… this is what makes me happy, this is what I choose.

Thanks for reading!

Pav

Self Esteem and Affirmation

Self esteem is an individual's sense of his or her value or worth, or the extent to which a person values himself. Approval, appreciation, worth, value and liking of one’s self…are all wrapped up in one's sense of self esteem.

For patients who live with chronic illness self esteem is a tricky thing. Apparently, if one is diagnosed early in life, during one’s formative years, then one’s sense of self esteem can be affected. I can imagine how hard it must be for adolescents and teenagers to manage growing up with illness that affects them daily and on many occasions impedes their social development. How difficult it must be to be a social creature and “hang with the gang” when one is in pain, and unable to leave home or is in hospital… and what that does to the young patient’s self esteem is incomprehensible to other, healthy young people, and to many adults.

I “came” to chronic illness later in life, after university and marriage, and was diagnosed after having had two children, so a lot of life’s landmark events had taken place in my life. My self esteem had always been closely associated to doing well in school, largely to please my father for whom it was important, and also because I loved reading, and really didn’t have many other areas in which to shine though I managed to do well in whatever I tried even if I wasn’t overly adventurous in life. I had ups and downs; years when things went brilliantly, then a slow period, and then a good span of years, and then quiet again… but overall it was good, and it made me feel good about myself. I dabbled in debating which again went well, and certainly my ego had the occasional boost, and I relished standing up to a crowd of complete strangers and making them laugh and believe the nonsense I’d made up the night before… how thrilling! :

When I was diagnosed with Crohn’s Disease I was in the midst of motherhood, a far cry from academia and debating. A world of diapers and playgrounds, nursery rhymes and alphabets… and I enjoyed the notion that I was passing on whatever knowledge and experience I had acquired in life to my sons. Unfortunately, as the disease progressed the symptoms made it harder for me to do the things I wanted to do. I was going to be Super Mum and cook and clean and wash and be good at just about anything I put my hands to… and it turned out that I couldn’t be good at all that and eventually I was good at the barest minimum. In the process of giving up my ideals I lost my sense of self esteem too – because it was wrapped up in what I did, in my accomplishments rather than in who I was as a person.

I then had to revisit my ideas of who I was and how I saw myself. Was I a failure because I couldn’t do many things, because I grappled with pain, because I perceived that others thought I was a bad mother… because I perceived in the recesses of my mind that I was a bad mother…? Life became almost unbearable under such a burden until I eventually faced my demons and realized that I had not lost my self esteem as much as misplaced it – it was simply waiting to be found as I discovered who I was.

Motherhood brought with it what I like to call “The Shifting Sands Syndrome” which refers to the fact that just when you know what’s happening with your kids they grow and change and pull the rug out from under your feet, and the sands are shifting and, well, you’re basically slipping as the sands shift… till the next state of equilibrium. All this is made worse by the concurrent shifting sands phenomenon of life with chronic illness… I find a state of equilibrium and am relieved and happy bordering on ecstatic, and then that is taken away as the disease flares but it returns at some point in time and so the roller coaster ride goes on and I hang on desperately, trying to stay sane and smiling so everyone else remains happy.

I distinctly remember that a group activity I was involved in at church once decided to do an “Affirmation” session, where we would take turns to briefly affirm each other, the purpose being to encourage each other and to build one another up, and to look for positives in each other. I honestly cannot remember what my group members said about me that night, except for one remark about my hair, and how this person felt my hair looked better longer. Hmmm…. Maybe I only remember this remark because it seemed so… superficial, and as I hold very little value in the length of my hair the remark meant very little to me, and hardly registered as an affirmation.

This past week on Facebook, a friend of mine started a tag thingy… where people were invited to describe him in just one word, and then do the same for themselves, i.e. invite others to honestly describe them in one, and only one, word. I did this exercise, because I was curious as to what people thought of me. I decided to view it as an exercise in affirmation, and with bated breath I wondered if my hair would be featured…”Hairy”, “Long-Haired”, “Mane-licious” being perhaps a few options

I was pleasantly surprised to find myself described, among other things, as “indomitable”, “loyal”, “kind”, “incredible”, ”passionate”, “intriguing”, “entertaining”, “witty”, “captivating”, “articulate”, “quintessential”, “sensitive”, “MamaDrama”, “Mama”, and that all time laugh inducer, “Facebook”. I read this list and had a giggle, and felt rather thrilled, and then I wondered if it could really be true that this was how people viewed me, and if this was what I was… and as I did I could see myself reflected in these words. I could see that I was more than pain and illness, tears and sadness, and that at some points in my life I had risen above my difficulties and been these things to other people and had been perceived as such by friends who had an insight into who I was and what I was like… and they valued these things, in short they valued me. I felt so blessed. I felt like I could fly… I felt like I could face anything that came my way, and get through the worst that life could throw in my path.

I told myself I would write in my blog about Self Esteem and the power of Affirmation, and life with Chronic Illness, and how these three things came together for me last week. Take a moment to affirm someone in your life, someone who is struggling, someone who needs a boost, someone who may have misplaced their sense of self esteem and needs a bit of help getting back on track. It will do wonders! It did for me.

Thanks for reading.

Pav

Humour Helps

“Laughter is the best medicine”. A very popular phrase that conveys the notion that one can almost laugh away one’s woes. Researchers say that they can show us physiological changes in the body that occur when we laugh. Endorphins are the new morphines, and groups have sprung up across the world that practice laughter the same way de-stressing enthusiasts pursue yoga or meditation.

I don’t know for sure if humour heals, but I do know for sure that humour helps. It has helped me in many ways. I think of myself as largely melancholic when in private, or in the company of very, very close loved ones, and somewhat sanguine when in the company of friends and acquaintances. Sometimes these seemingly diametrically opposed parts of my nature almost seem to clash… I cry one moment, and then I laugh the next! Terms like “bipolar” flash through my mind occasionally… :) but my friends tell me that they do the same… and I am comforted that I am normal.

Humour comes easily to me because I have long used it to hide my true feelings, to avoid confrontation, to get attention, to entertain others, and sometimes just to plain annoy people. It is only in recent years as I have lived with Crohn’s disease that I have come to perceive of humour as being helpful in the healing sense.

When I have been racked with pain, or when I am unable to eat or when I am so drained that I feel weak, I sometimes break down and cry. It’s one of my 2 coping mechanisms. I cry, and the tears, apart from washing my eyes as a friend once cheekily suggested, seem to relieve the burden I feel and carry in my body, my soul and my spirit. Being melancholic by nature though I can linger in this state of sadness if I allow myself to do so, but as a wife and mother I can’t allow myself to wallow. And so I employ my other coping mechanism, laughter, long practiced in my early days when I laughed more than I cried.

While the tears relieve me of my burdens, my laughter completely chases the lingering shadows away. I feel that endorphin rush, and the natural morphine of laughter not only numbs the pain for me, it nukes it as well… it is gone. For that moment in time I feel free.

I laugh easily over fairly silly things, largely I think because I have young children who find humour in even the most inane and banal of things. This is of course a nicer way of putting things than saying I am simple. Ha! Perhaps years of illness have made me so… it doesn’t take much to make me cry and similarly it doesn’t take much to make me laugh. In particular I love witty jokes and cheeky puns, and I enjoy witty repartee with my dear friends who engage and indulge me on occasion.

And so when I am faced with the pain of illness, and by extension the other pains of life such as the loss of a loved one, hurt, the ending of a friendship, grief etc I do not linger for long in sadness and melancholy, weeping and mourning. I do feel and do these, but I choose to see the journey ahead. A journey through time and the healing of some pains, while with others, like Crohn’s , the lack of healing. In choosing I decide to move to humour and laughter as a means of coping and surviving beyond the first flush of tears.

Humour helps me stay happy, and when I’m happy a whole lot of other people are happy too. Humour helps. I hope it helps you too!

Thanks for reading! :)

Pav

At Death's Doorstep

To be at death's doorstep, to me, means that I have seen death close up. I have been at death's doorstep on a few occasions before... I was there when my maternal grandmother, Ratan Kaur passed away, I visited with my dying maternal uncle, Mohan Singh Penu, in his last days battling cancer and I have attended funerals of friends and relatives who have left this world. At each of these occasions I was acutely aware of the meaning of what transpired before my eyes and I felt deeply the ending of each life.

My own father, Harbhajan Singh Gill, passed away on 26th September after being in a coma for 32 days following a heart attack. I visited him often and watched as death slowly descended upon him. Some prayed for a miracle, others prayed for a quick end to his suffering. Doctors told us he was not suffering or in pain. I never really felt sure of that. Every visit with him was very painful. I saw his once firm and well toned arm muscles deteriorate and his cheeks hollow out... I knew he was fading before my eyes.

The time that I had by my father's bedside was redeemed time... given to me to make my peace with him as a child of divorce even as he lay there battling death. What then to pray for when death visits in this slow manner? I prayed for peace. I prayed for love. I prayed for forgiveness, and I forgave. I prayed for healing... not of the body, but of the spirit. I prayed that his spirit would be at peace, and would know the love of God.

In my heart I knew that even if he was healed miraculously and his life extended by another 5, 10 or 15 years, his spirit, his inner man, would always need that peace, just as I do, and just as all of us do. Peace to leave this world and move to the next. Peace in knowing that one is loved and forgiven and missed and cherished no matter what has happened in the past. Peace that transcends all understanding, the very peace of God itself.

At death's doorstep by my father's bedside I cried many tears... of sadness, of regret, of longing, of hurt. But at death's doorstep I began my own journey towards joy, and peace, and love and healing. It will take time but I know I will get there.

How to journey down this path as someone who lives with chronic illness? My own body began to collapse under the emotional burden placed upon it, the stress of traveling so much, the change in diet, the lack of rest that came from visiting my father in Kuala Lumpur. I did what I could to manage it, but I felt the slow but sure deterioration of my own body even as my father experienced his. I knew, however, that mine was reversible while his was not.

I am in recovery mode. Resting a lot, and sleeping when I need to, and enjoying being back in my own space and eating food that suits me best. My father's condition is irreversible and permanent, lasting and unchanging... he is gone from this world forever, he is no more. Whatever it was that made him unique as an individual is gone with him, never to be seen or felt in its own special manner again. I am but a little part of him that endures. Battered and tired, worn out and exhausted from watching his slow demise and eventually sending him off on his final journey...

While I prayed for the healing of his spirit as I read to him and cried over him I am now seeking the healing of my emotions, my pain and my body from the rigours of the past 5-6 weeks. I hope to get there soon. I hope to be at a place where all is as well as can be, considering the failings of my body and the frailty of my emotions. I think I'll be okay. In fact, I know I will be, eventually. :)

Thanks for reading,

Pav

Sensurround Stress

Stress is said to be a major part of modern life. It gets blamed for many things... for inducing heart attacks and migraines, to exacerbating depression and leading to higher rates of suicide. Sometimes I feel a tinge of sadness for much maligned stress; in fact it's even a factor in chronic illness. It is said that stress can cause a flare up of Crohn's Disease, or worsen an existing flare. Many times patients are encouraged to learn to de-stress, as if stress were something one could magically remove from life and set aside. I often wonder if this is really possible.

Stress is all around us. I know it's a major part of my life. With 4 children it's hard not to be stressed to some extent. Add in a worrying (not worrisome!) personality, an ailing father in a neighbouring country, a PhD that is begging for attention, and a chronic condition that cries out for me to curl up and sleep in a corner... and well... it's a recipe for feeling stressed. Right out of my brains sometimes. But I think it's normal. Who doesn't have some stress at almost every point of their life? It's all around us... sensurround stress impinging on our senses at almost every turn.

How then should I approach stress? Is it an enemy to be avoided at all costs because, heaven forbid, it could make me ill? Is it an ally to be embraced because, God willing, it will spur me on to greater things? I'm not a Type A personality who thrives on stress... but if need be it does give me a push to do things I might otherwise not do, or put off doing. Certainly it gives me an adrenaline rush that reminds me I am alive and gets me going, but I do know that there are times when I have been overwhelmed by stress and my digestive system gets going too... and I'm unable to physically keep up with the demands of stress on my body and my psyche.

It's quite the fad to speak of methods of de-stressing as if they can be easily incorporated into a busy lifestyle. Yoga is good they say... I should make time for it I am told. Or maybe pilates. Or perhaps even plain and simple meditation. Not quite the "empty your mind" kind which always scares me, because I'm not sure if my mind will return once I've emptied it :) but the "think of a peaceful place" type of meditation. Well, I don't think the people who do these amazing things have ever lived in my house... where the only real chance for a peaceful meditation is at 10pm when everyone is in bed and my dear hubby and I can engage in the "shall we watch something intelligent or a nonsense movie" type of meditation.

We live in a generation of ME people... where everything revolves around the individual. It is loosely believed that if the individual is happy then those around them can be happy. In the pursuit of the individual's happiness comes the concept of personal space, me-time, self attainment etc... the essence of all this being that the individual can only give of himself if he is fulfilled. And so we go off in search of fulfilling our own needs...but I think this is looking at things in reverse. I feel that is in meeting the needs of others that our own needs are met. In making others happy, we ourselves attain happiness. In fulfilling others we fulfill ourselves.

This helps me keep going through the stress I experience daily. Stress is not an enemy, neither is it an ally. It is simply part and parcel of life. I cannot escape it, neither can I overcome it, but perhaps I can ride through it, recognizing that ultimately it reminds me of my place in the larger scheme of things. I will not fall apart because of it... I might slow down if need be, but I will fight the urge to be overwhelmed by it. I will allow it to give me a push if need be, and I will recognize when I may need to step away from things that may not be good for me... but I will not fear stress or avoid it completely. I don't think I can and I don't think I want to either... it reminds me that I am alive!

thanks for reading.
pav

Are You Pregnant, Again? And Other Embarrassing Questions.

Just last week a couple I hadn't seen for a few years bumped into my husband and me at a hawker centre. We exchanged pleasantries, and did a quick catch up on how many children we each had, and then parted ways to get on with supper. On her way out the lady came by to say goodbye, and in the process asked me that dreaded question... "Are you pregnant, again?" I was shocked... but managed to laugh it off with my standard, "No, I'm just fat!" and we giggled nervously while she confessed to wearing a girdle. When I told my dear husband about it later he laughed and said that the lady's husband had asked him how he managed to stay so slim! Haha! Life can be so unfair sometimes! (and maybe this girdle business is worth investigating!!!)

Why do people ask me this question, "Are you pregnant, again?" from time to time? I already have 4 children, so I have no lack. Maybe that's why. They think I love children and the notion of having them that surely I would want many more, and that is very true. I am in love with the notion of having more! How lovely it would be to have had more children! I really wanted another daughter, but it never happened, and now the time is past. The batteries have run out on my biological clock.

Part of the reason why it never happened is because of Crohn's Disease. When I had an obstruction and had to go on a liquid diet for 8 weeks, I was also put on immuno-suppresants, in particular azathioprine, which is not at all permitted during pregnancy. So I had to give up the notion of having any more children in 2005, when I was a mere 38, and surely could have managed one last child! I debated this with my doctor, I wept tears of sadness when I was alone, I raged against what I perceived to be the imposition of the end of my fertile years... and so it was indeed.

On really hard days I am grateful that I have only the 4 to worry about, and believe me, sufficient unto the day is the worry thereof. On days when things are smooth sailing I wish I had another little one who hung on to me and thought that I was the centre of his or her universe. But then my existing 4 break out in a big squabble and I think that all is well as it is, and if I can get through the day without blowing my top, well then I'd have seen a miracle!

One of the many side effects of being on steroids is that you tend to put on weight, especially around the abdomen and on the face, while your arms and legs remain skinny sticks. I have some of that appearance, which is why people ask me if I am pregnant, and why I just give them the simple and self-depreciating answer that I am fat, because they can't handle the truth, or rather they simply don't want to hear it.

Conversely, I was once asked if I had a wasting disease or cancer, when my weight plummeted and I was very skinny, back in the old days before I was diagnosed properly and the Crohn's was very active. I was so thin and so tired. I just shrugged and said I was unwell, but it was nothing serious. In fact I had no clue what it was back then.

Once, when I was unable to eat much and had been invited to an Indian wedding dinner, I was in two minds as to whether I should attend because I wouldn't have been able to eat Indian food, and didn't wish to embarass anyone. I decided in the end to pack my own dinner, and managed a mix of fruit and salad which suited me then in my "fiber is allowed" days.

I sat at the table, and when food was served and people started helping themselves to the buffet I whisked out my tupperware and began picking at my food. I got some stares, and a few obvious questions, along the lines of "Oh you brought your own dinner?" I felt so weird, and wondered if I'd done the right thing. In the end it was such a relief to go home feeling well, and not have to be ill from food that didn't suit me so I told myself it was the right thing... for me.

I have never done that again, though. I go to dinners and eat plain naan if I have to, just so I don't embarass myself or anyone else. I don't think people can accept packed food in the setting of a big dinner, though I have few qualms about explaining dietary limitations to my host in an intimate setting. Nowadays I simply say, "Cook anything. If need be I can have toast. I'm not there for the food, really, it's the company". And indeed, it usually is... after being home with 4 kids... give me adult conversation or I die! :)

One issue with being on steroids on and off over 12 years is that I have morphed from skinny to not so skinny and then back again to skinny. In between all this I had my younger 2 children... and so my wardrobe has swelled even as I have. I have clothes for pregnancy (finally disposed of last year) I have skinny wear for when the Crohn's flares up and I lose weight, and I have not so skinny clothes a whole one size larger, for when my steroid tummy bulges, and I am putting on weight. And of course I also have the small selection of "What was I thinking when I bought this" clothes. :)

So when I need to I wear something looser and not so fitting, and when I think I can pull it off I wear something a little closer to the skin, though it's hardly too fitting either. How then to deal with the folks who ask you if you're pregnant because you're floating about in a loose blouse or the kindly ones who tell you to your face that you've put on weight? Sigh. "I'm just fat" to the rescue again. And a conscious decision to laugh instead of cry.

At one stage my hair was falling out, and I suspect it was due to one of my medications. I decided to lop off my hair to preserve what I had. Unfortunately this then led to questions like "You cut off your hair?!" (Gasp, shock, horror!) Life as an Indian woman can be hard. It's as if your womanhood is embodied in your hair, which essentially is a bunch of dead proteins. and amazingly grows back if you cut it off. So my hair has been through a lot too... and I just laugh off the gasps of horror...

Food, clothes, hair... just a few of the things that obssess us all on a daily basis... but I have grown to feel that certainly I am more than these, I am more than that which concerns the flesh. I am a soul on a journey in an imperfect vessel. I laugh off the embarassing questions, I look beyond what is impermanent, and I rejoice that if my corporeal dimensions enlarge over time then maybe, just maybe, that's because my soul too has grown, and needs a little more space. :)

So the next time you see someone with short hair in a loose, ill fitting dress, with a bulgy tummy and skinny limbs, with packed food at a wedding dinner... say something kind. It could be me! :)

Thanks for reading!

Pav

Dave Barry's Colonoscopy Journal : Laugh Your Way Through It All!

I was sent this and it really made me laugh. It's simply hilarious and brilliant. I've been through at least 6 of these colonoscopies, but some patients have had many more. Most people ought to have one somewhere in their lives, so do enjoy Dave Barry's version :) pav

Barry's colonoscopy journal:

====================== I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis. Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!'. I left Andy's office with some written instructions, and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America's enemies. I spent the next several days productively sitting around being nervous. Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the MoviPrep.You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons). Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon. The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose, watery bowel movement may result.' This is kind of like saying that after you jump off your roof, you may experience contact with the ground. MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet. After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?' How do you apologize to a friend for something like that? Flowers would not be enough. At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked. Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn't thought of this , but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house. When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point. Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand. There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA. I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' had to be the least appropriate. 'You want me to turn it up?' said Andy, from somewhere behind me. 'Ha ha,' I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like. I have no idea. Really. I slept through it. One moment, ABBA was yelling 'Dancing Queen, feel the beat of the tambourine,' and the next moment, I was back in the other room, waking up in a very mellow mood. Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ. ABOUT THE WRITER Dave Barry is a Pulitzer Prize-winning humor columnist for the Miami Herald. On the subject of Colonoscopies... Colonoscopies are no joke, but these comments during the exam were quite humorous... A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies: 1. 'Take it easy, Doc. You're boldly going where no man has gone before! 2. 'Find Amelia Earhart yet?' 3. 'Can you hear me NOW?' 4. 'Are we there yet? Are we there yet? Are we there yet?' 5. 'You know, in Arkansas, we're now legally married.' 6. 'Any sign of the trapped miners, Chief?' 7. 'You put your left hand in, you take your left hand out....' 8. 'Hey! Now I know how a Muppet feels!' 9. 'If your hand doesn't fit, you must quit! 10. 'Hey Doc, let me know if you find my dignity.' 11. 'You used to be an executive at Enron, didn't you?' 12. 'God, now I know why I am not gay.' And the best one of all: 13. 'Could you write a note for my wife saying that my head is not up there?'

The Need for Normalcy

Most of us relish the thought of being "normal'... though perhaps there are moments when we wish we were the exception. "Normal" can mean many things to many people, and I don't intend to be controversial here. I have nothing against being "unique", or "extraordinary"... in fact I think all of us are unique, though of course that implies that none of us are :) . I use "normal" to mean a "functioning" member of my society as loosely defined by the rules and norms of the society in which I live. Someone who can fulfill their different roles within the family and society, manage themselves independently, contribute to society and not be a burden. Hopefully, someone who enjoys life a little along the way. I think that's fairly normal :)

The need for normalcy is never greater, in my opinion, than when one lives with chronic illness. I never thought of myself as being anything more than a normal person living my quiet, normal life until my life was interrupted by illness. Grappling with the symptoms of Crohn's Disease on a daily basis meant that my life was not normal... but I didnt want to think of myself as being "abnormal" either. What was my life now, and how was I to think of myself, and to a people pleaser like me... another important question was "How would people perceive me?"

After 12 years of disease I have found some semblance of normalcy to call my own though it may not be normal by the standards of most people. The difficulty with a disease like Crohn's is that flare ups sometimes occur unannounced and when that happens whatever plans I may have had, whatever ideas I may have conceived of life in a steady state, these plans go out the window. Or, perhaps more aptly, are flushed down the toilet :) .

There have been countless occasions when I have thought that I have seemed well enough to do many things I hadn't been able to do in the past, only to find myself in a flare up and unable to do what I wanted. How upsetting, and how depressing these moments can be, and how difficult it is to cope with the despair I have felt, and to communicate that to others. It is so hard to plan forward, and to act on those plans, and sometimes when I try, I am caught up in the difficulty of trying and failing, and coping with the emotions that all that entails.

This is the difficulty then in trying to rearrange my thoughts, my emotions, my behaviour, my actions to suit my body and to live within the confines of illness... to accept the boundaries and limitations, to accept the spanner in the works caused by flare ups and yet to still love myself and life, and live to the fullest.

How does one explain all this to others, when one barely comprehends it one's self? After 12 years the pain of disappointment has not dimmed. Each flare up is painful, each one is an emotional upheaval, each one brings tears. How do I bridge the gap between what I feel when I am living through a flare up and can barely manage myself and my emotions and my pain, and yet have to worry about the needs, cares and perceptions of others? It is difficult. It is incredibly difficult. But it is important to try because in doing so, one approximates a semblance of nomalcy... because I believe that if we looked beneath the surface of each other's lives we would find that many of us are doing the same thing. All of us are trying to live normal lives despite whatever is going on within us.

This belief helps me cope, and gives me compassion for others. It also gives me compassion for myself. I need that from myself. I need to forgive myself my own failings, weaknesses, physical limitations and the myriad of other things that I perceive to be the negatives in my life... and learn to embrace me. In so doing I can embrace others, and with a renewed compassion grown from my own sufferings I can better understand others, and help them know that they too are normal, that whatever they are struggling with, whatever pain and hurt plagues them, it is a common tie that binds us as people. We are all struggling in our our individual journeys, and that makes us all normal.

Thanks for reading,

Pav

Great Expectations

We all have expectations of ourselves and our lives, and act accordingly, most of the time. I had great expectations of myself... in terms of being a wife and a mother in addition to being a daughter and a sister and a friend... all of the roles in life that I had to play. I wanted to give the best that I could in all things and be all that I could to all people. Ultimately, chronic illness changed my life and my perspective on things.

It's already a lot to ask of one's self to want to give the best and be the best... and when illness comes into the picture, well, the script needs to be rewritten. It needs to include time off for plenty of rest, for pain, for visits to the doctor, for hospital stays, for side effects from medication that make you feel exhausted, for down time alone... it is no longer possible to be all things to all people.

When I started having symptoms of Crohn's Disease I was plagued by guilt as well. I felt that I was constantly failing. I wanted to do so much... but I couldn't as I was crippled by the symptoms. In the end I felt like my world was crumbling. The world that I had built in which I was, to some extent, in control over what happened in the course of the day, and the world in which I had the energy to pursue my passions was falling apart.

I was reduced to a very simple and basic motto : "Just get through the day". That was all I lived for and all I wanted after awhile. I reduced the expectations I had of myself, and in the process the expectations of everyone I had around me in my family. It was no longer the most important thing that "if something was worth doing it should be done well or not at all". For a season in my life I did very little because I knew I couldn't do it well... but now I am happy to accept that some things don't have to be perfect, and that with many things in life just giving what we can at that point in time, no matter how little it may be, is truly enough.

I still struggle with guilt. Not a single day passes when I don't think about how I could be so much more than what I am... and yet I also realise my limitations due to chronic illness. Not a day passes when I don't remember what my life was like before Crohn's... and I miss my past life and the simple joy I had of being able to do whatever I wanted. If I had known then that I would have had to live with chronic illness and all its debilitating symptoms I would have drunk so much more deeply from the cup of life... I wouldn't have wasted a single minute of time in sadness or inertia... I would have truly enjoyed the freedom that I had, but didn't truly appreciate, of life with a healthy body.

How to move forward then to living a life with chronic illness? Guilt and regret, sadness and sorrow... these visit whether I want them to or not, but I do not let them linger. I live for the day, but I also want to plan for the future. What unit should I use? The week, the month, the year? Five years from now? I do not know. I only know that I must think ahead to something better so I can get through this moment.

Hope keeps me alive. Hope that tomorrow will be a better day.

pav

My Friend Brenda and Her Journey with Crohn's

Over the past 12 years I have met many patients with Crohn's Disease and Ulcerative Colitis, and some of them have become close friends.

One of them is Brenda. We linked blogs today, and her link is on my page. If you would like to know how someone survives the removal of their colon and life with a colostomy and a bag, well visit Brenda's page. I admire her courage, and her resilience, and her sense of humour, and her "Never Say Die!" attitude.

Thanks for linking up, Bren, and let's do lunch soon. My treat to celebrate my becoming a blogger. haha! We should go to one of those internet cafes and munch AND blog at the same time... :) oooh, I'd feel so young and hip and cool... for a couple of hours it would be refreshing!

pav

My Pre-Diagnosis Days : Living with the Unknown

A friend of mine asked me what symptoms I had that led to my being diagnosed with Crohn's. I think that's a very timely question, and so here I am, writing about the story of how I came to be diagnosed with Inflammatory Bowel Disease, specifically with Crohn's Disease.

As the phrase "inflammatory bowel disease" connotes, the bowels are involved. In the case of Crohn's the entire digestive tract from start to end can be implicated. My symptoms largely involved my colon, and in particular my terminal ileum, where the small intestine meets the colon or large intestine. Deep ulcerations work their way through the mucosal wall, and scarring occurs as part of the cycle of healing and re-inflammation... over time these scarred areas cause obstructions that may need to be surgically removed.

As it is a disease that involves the bowel, unsurprisingly the symptoms revolve around very earthy things... the sort of stuff we don't talk about at the dinner table, but maybe in blogs :) I had watery diarrhoea up to 10 times a day, colic abdominal pain, low grade fever, joint pains, and reactive athritis in my feet.

The diarrhoea first began during my first pregnancy in 1995, and it was thought that perhaps it was a hormonal thing and left untreated, which suited me fine as I never even took a panadol during my pregnancy. After my son was born the diarrhoeas continued, though I had less and I had few other symptoms. I then went on to have another child in 1997, and shortly after my second son was born, my health went downhill rather quickly.

I insisted on nursing him, and I remember that I had 8-10 watery diarrhoeas, and 8-10 feeds per day... in no time at all I was very thin, and quite ill, and ended up in hospital. I stopped nursing and went on some medications, and got a bit better even though I was not properly diagnosed at that time. Unfortunately, I then developed a fistula in 1998, which is a tract/tunnel that develops between the intestine and another organ...and fecal matter gets trapped in there causing infection and swelling etc. In my case it developed perianally and required surgery... my very first surgery which wasn't much fun at all. The hardest thing was sitting in salt baths for months afterwards every time I went to the toilet so that the area wouldn remain clean and uninfected. I remember reading through many novels while soaking... and not leaving home very much at all.

When my maternal grandmother passed away in 2000, I was deeply saddened and quite stressed... and I developed ulcers in my mouth... this in combination with the fistula and the diarrhoea and joint pains led to my being diagnosed with Crohn's as they are typical symptoms of the disease. I was given steroids (prednisone) and since I responded to them that was taken as another sign that what I had was indeed Crohn's.

My inital response was to completely break down and cry... I think the terms "incurable" and "chronic" terrified me. I bought a book to learn more about it... the chapter on cancer scared me even more! I was depressed, and was referred to a psychiatrist for help in dealing with depression. It was very useful indeed to have someone to talk to and who could help me deal with many issues, some of which I still grapple with as the disease is chronic... it never really goes away.

The best thing, however, about being diagnosed was that finally I was given the right medication, and it worked wonders for me. I had energy, I wanted to go out again, and do stuff with the family... I found my life again! The diarrhoeas became less, and I felt energised and alive. The steroids had their own issues...I found that I had mood swings and was easily irritable, and edgy, and ultimately they affected my bones. I later went on other medications to spare myself the side effects of steroids.

I felt well for a few years, and then decided to have another child in 2002. I decided to go off all medications during pregnancy and I found that my symptoms went away, and I was very well. Someone joked that maybe pregnancy was my cure for Crohn's... I joked back that I would certainly need help raising 15-20 kids if that was the case! Unfortunately though, within 4 months or so after delivery, the symptoms returned... as the body readjusts hormonally etc... and so I was back at the hospital, and on various medications again.

My fourth and last pregnancy went well too. I was on some medication at that point, and able to eat and had few diarrhoeas, though I was severely anaemic. It has taken me 5 years post-delivery to build up my iron levels...

In the process of living with Crohn's I have "starved" for 8 weeks in 2005 when I did not eat but only drank a special drink 8 times a day in order to avoid intestinal surgery, I have had 6 colonoscopies, I have gone on immuno suppressants and other drugs which have troubled me with their side effects, and to some extent, lost a lot of the essence of who I really am, or who I thought I was... I am still reworking the new me... and every time I think I know who I am the Crohn's flares up again, the carpet is pulled from under my feet, and I am at sea.

No one knows the cause of the disease, and hundreds of researchers are spending millions of dollars trying to find a cure. It doesn't really matter what I eat or do... I can ameliorate the symptoms through destressing and dietary changes, but I cannot get rid of it through any act of my own. The fact that I have retained some measure of my sanity through all of this baffles me... and I remain grateful for the loving care and concern of family and friends who have suffered alongside me. I don't know why this disease came to be a part of my life but I like to think I can still find a way to live with it. I have to, and I want to, so I shall!

(for more detailed information on Crohn's Disease, Ulcerative Colitis ie the two Inflammatory Bowel Diseases please visit the CCFA website. The link is at the top right corner of my blog page.)

Thanks for reading!

Pav

The Personality of Pain

Pain is a recurrent companion of most people with chronic illness. It isn't a friendly, nice companion one desires to keep by one's side... it's one of those forced companions that travels with you whether you want it to or not. Maybe "companion" isn't the right word, but it'll have to do for now.

Does pain have a personality? I like to think it might. I sometimes think about the intestinal pain I experience because of my Crohn's Disease, and I amuse myself by personifying it.

Pain is very loud, and lets me know when it is here. Never one to announce its entrance it barges in unheralded. "Pay attention to me", it screams. "I am here, whether you want me to be or not". "So you thought you got rid of me, did you? Haha!"

Pain can also be selfish and refuses to share me with others. It wants me all to itself. When I try to explain how I feel to others, I can never quite do that effectively. Neither can anyone enter into my experience of pain. I am alone with pain, despite being surrounded by a multitude of people, and at times, when I am already feeling like a wallflower, pain practically glues me to the wall.

In the early days of my illness, prior to diagnosis, I used to curl up at night and cry myself to sleep. I didn't know what was wrong with me, why I was in pain, and I couldn't quite explain it to anyone. My loved ones were bewildered, I was mystified and frankly, depressed, and quite miserable. I had two young sons then, and getting out of bed everyday was a major challenge. Leaving home was something I rarely did, though I was a regular fixture at the playground. Close enough to home in case I needed a toilet or to rest.

Diagnosis helped me tremendously. It took 3 years of symptoms before I was diagnosed. While it came as an utter shock to be diagnosed with a chronic and incurable disease, I was relieved that finally I knew what it was and there was some kind of treatment for it. The first benefit was that I experienced far less pain. Of course the medicines had side effects, and they were awful, but the lessening of pain was simply wonderful.

I didn't miss pain... it didn't let me. It came back. It still does from time to time. But I feel differently about it now. I don't cry as much as I used to and I know that there are ways and means to manage it, and that it is part of my life. I know I will feel better soon enough as I have in the past, and so I wait for that time to come. I have come to accept pain as a visiting "companion". I don't hate it, neither do I expect to be totally rid of it but I certainly don't embrace it either.

Over the years, I realise that pain has changed me. I used to be able to take a fair bit of a pain. My classic example being the fact that I gave birth to 4 children without pain relief. Really, I did! I wonder why now, in retrospect, but that's another story! :) I do know that I have become fragile and my emotions are so brittle that now a little pain seems magnified to me.

My child's scraped knee from falling off a bicycle makes me gag, my stomach clenches, and I cannot bear to look at it. I go to the dentist and am paralysed by fear and nausea, and cry... until the jabs of anaesthesia kick in and I can manage a root canal... I watch suffering and pain on tv or read about it in the papers and I weep. I am weakened internally in some way, but I cannot explain why. I think that years of pain have taken their toll, and in some way they have sensitised me, not to make me insensitive to pain, but to give me a heightened sensitivity.

Most importantly, I have come to accept that no one can share my pain, no matter how much they may want to, or how much they love me, and my suffering is unbearable to them. They simply can't. Pain is very personal. Fortunately, I have come to a place where I no longer suffer in silence but I am able to tell the people in my life that I am in pain and they understand what I mean by that and what I need. I surround myself with the people who love me and accept me with not only my own failings, but with the added burdens of chronic illness and accompanying pain.

So, pain, that old companion of the chronically ill, when you come again I will be prepared, and I know your visit won't be long and I know I can cope because I understand our "relationship", and have the comfort of those who help me manage your visits.

Just pack a small bag for the next visit. After 12 years you've really overstayed your welcome :)

pav

My First Post!

Finally, I have begun writing a blog. I have thought about it for awhile, and actually started this page late last year... but it wasn't until today that I have finally decided that I am ready to write about my life and to share it openly with other people.

I have had Crohn's Disease for 12 years now, and in the process so much has happened to me as a person directly because of chronic illness, and also as part of the usual happenings in life. Along the past 12 years I have come to meet other people with Crohn's Disease, and it's sister condition, Ulcerative Colitis (UC). I have also gotten to know people with other chronic and incurable diseases, like rheumatoid athritis and SLE (Lupus). In all my many encounters I have been amazed at the strength and resilience I have seen in so many people, and to some extent I have found them surprisingly, even in myself.

This ability to carry on despite what life throws at one has become a minor obsession with me... I am now looking at how people cope with Crohn's and UC as part of my studies. I remain acutely aware that I am trying to live through a chronic and incurable disease myself.

Some days I cope, and other days I don't. Some days I am fine and functional and other days I am too exhausted to speak. Some days I laugh a lot, other days I weep a lot. I want to share this journey with anyone who will read about the minutiae of my existence, not only because I feel a compelling need to share the nitty-gritty details of my life with other people, but because deep down inside me I do believe that every meaningful experience each one of us has had and will have has the capacity to encourage someone else.

In that spirit I begin my blog today. I promise that it will not be too dark, that there will be lighter moments, and that I will try not to be overly self indulgent and that I shall endeavour to make the experience of sharing my life with you as interesting as possible. Oooh... sounds like a tall order. I can only try. :)

pav