Pain

After the final whistle, I leave the pub as quickly as possible. I do not want to see the images of cheering Spaniards and heartbroken players in Orange. I greet my friends on the Hof and with a buddy I walk to the car. We join the crowd of disappointed fans, while we work our way through the centre of Amersfoort. We try to cheer each other up; the referee was awful giving far too many cards and losing sight of the game. And if Robben had just taken the shot instead of trying to dribble past the goalkeeper then…. I grudgingly reach the conclusion that the opponent was better today, if only marginally..

As I drive through town, Boekgirl calls me and to my surprise I hear Boekkid in the background. He was woken by the din in the neighborhood. “Did Holland win, Daddy?” When I tell him that unfortunately we lost, he becomes very sad. Now I want to get home as quickly as possible to comfort him, but when I arrive fifteen minutes later, his Mama has obviously done so already. We give each other a hug and talk about the game a little bit. “Spain was naughty, right Daddy?” I agree and notice he has put the matter to rest.

I am amazed how quickly he has worked through his grief and I wonder if I am avoiding the sense of disappointment. In the car I had turned off the radio, at home I refrain from turning on the tv and online I stay clear of the media sites. I do not want to see the footage. I do not want to listen to the interviews. I do not want to read the commentary. Every day I confront the pain that is caused by RA and regularly I seek the margins of it. It has a place in my body and my life. But on this day I am avoiding the pain of the loss of the Dutch nation football team. I am reminded of a line in the song “Laat me slapen” (Let me sleep) by the awesome Dutch band Acda&deMunnik. The protagonist gives the newspaper back to the delivery boy, reasoning that if he does not read the news it has not happened. In my convoluted mind the Fifa world cup 2010 ended after the semi’s.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, August 2010

Published in: on August 10, 2010 at 1:17 pm  Leave a Comment  

Low-Tech RA monitor

It’s a strange realization that Boekkid only knows a world with internet. The digital world is almost second nature to him. His little fingers are perfect for navigating an iPhone and he moves a cursor with great ease across a computer screen. But he has also learned that information can be found in books, which we put into practice when he forgets the name of a particular dinosaur.

During an editorial meeting of In Beweging, we were discussing how the world was getting increasingly digitized. It seemed not too long ago that we were using index-cards to organize catalogues, but now we are already so used databases and search engines. I learned at university that a sound structure is needed to form the basis for a good (non-virtual) database. If the foundation is sound and simple it is easy to build upon it. Many IT-professionals will agree that great websites, apps or software packages start of as a sketch on a sheet of A4.


The Reumamonitor (RA-monitor) of the Dutch Arthritis Federation is a prime example of a well built site. RA patients can monitor their disease activity and daily functions on this website. The Reumamonitor (http://www.reumamonitor.nl/) is based on the DAS (Disease Activity Score) and is very user friendly. On an illustration of the human body, you click the joints that are painful and/or inflamed. You fill in the latest lab results of your ESR and on a sliding scale you determine how you feel, ranging from good to bad.

It was not difficult to translate the essence of this monitor to a sheet of A4 and adapt it to my needs. I added two other scales, for pain and mental fitness. I’ve hung it on the magnetic board next to my bed and start most days determining how I feel, by sticking red magnets on this low-tech RA monitor. By doing this I find it easier to determine what I can do that day and it gives me a sense of control over this disease. It has also proven to be a great way to teach Boekkid about RA. Because it’s visual and so simple, a four year old gets it. Somehow it made more sense to go low tech on the Reumamonitor, than showing it to him online. And it works! Sometimes he will come into our room and mark the monitor for me, asking me which joints hurt and how much ‘ouch’ I have. It’s ‘fun’ for him to do and gives him a better understanding how RA affects me.

I’m very grateful Boekgirl and I have been able to explain RA to him, without burdening him with it. It’s a given for him that I have this disease and sometimes I feel he accepts it more than I do. As he grows up I’m sure I will have to disappoint him on occasion, because of a flare. Both of us will have to learn to deal with these disappointments.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, June 2010

Published in: on June 15, 2010 at 8:57 am  Comments (2)  

Exercise

Every now and then I take Bookkid with me to the gym. There’s a lot for him to see and he loves to try out the gym equipment. I don’t take him along often, the novelty would soon wear of and when he’s with me I don’t always get a full work out. I don’t mind though, he gets to see what I do at the gym and learns that exercise is good for you. And once in a while it’s a nice change of pace for the both of us.

The gym I go to twice a week is staffed solely by physical therapists. I ended up here after I followed the RAPIT program (Rheumatoid Arthritis Patients In Training). The PT’s put an exercise program together which followed up on my RAPIT schedule. Sometimes the exercises are quite tough and I suffer regular setbacks. But in the long run, there is no denying that exercise has benefitted me greatly, and I could not have achieved this progress without the help and guidance of my physical therapist. I’m in much better shape, my joints are reasonably loose and I have become quite a bit stronger. I think exercise can benefit every RA patient.

That is why I was surprised that a fellow RA blogger claimed the opposite a few months ago. This blogger is convinced that there is a group of RA patients who are in such a bad way that exercise is impossible. Critical questions have rightly been asked about the general advice given by doctors telling patients to ‘just exercise’. A lot of readers have commented on this post, some advocating exercise others saying it is not viable. Good arguments have been made, but I can’t seem to shake the feeling that the group who do not believe in exercise seem to be looking for any argument to not exercise. It could also be a question of cultural difference. An arthritis researcher told me that Dutch rheumatologists promote exercise much more than their North American counterparts. The position in the Netherlands is formed strongly by the success of the RAPIT program, which has benefitted almost all the RA  patients who followed it.

Which is why I am interested in what you, the reader thinks. Please vote on the poll.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, May 2010

Published in: on May 3, 2010 at 11:21 am  Comments (1)  

Apple

Having RA is like being an obsolete computer. Starting up takes forever and once I’m up and running not all of my software (joints) are functioning properly. Obviously this is because my processor (immune system) has been infringed, which makes me more susceptible to viruses. Sometimes a new computer freezes up as well, but rebooting the system (good night sleep) often solves this problem. But an old PC rarely responds to a reboot, and if it does, the effects do not last. A wide scope of solutions are needed to keep a slow computer up and running.

First of all a sound anti-virus software package (medication) is absolutely necessary. Unfortunately this can slow the system down (side effects) even more. Secondly, it is essential to download the newest and correct downloads (healthy diet). Make sure you don’t browse sites that can interfere with the system (doing too much) and it’s important to defragment the hard drive at least once a week (exercise) and in doing so, remove temporary and old files (work up a sweat).

If you follow these instructions, an old pc can function for some time. But I’m just treating the symptoms here. I’ll never be a new computer, I’m stuck with the obsolete one (RA).

I wish I was more mobile, I wish I was a Macbook pro.

Thank you for your time, take care of yourself and remember to keep passing the open windows (OS X of course..).

© Ferhaan Kajee, March 2010

Published in: on March 30, 2010 at 2:48 pm  Comments (5)  

Play

“Daddy, I want to play with you!” I regularly hear Bookkid say this to me and most of those times I’m sitting on my favorite spot on the couch, resting with my feet up. He has been playing with his train set or another toy for a while and does not want to play by himself anymore. Surprisingly, he can’t be enticed to watch a DVD of Spiderman or dinosaurs, but that does not discourage me from trying to persuade him to do so anyway. He uses the words, “Daddy, I want to play with you!” to reach out to me and it pains me that I am not always able to comply to this request.

When I’m not able to actively play with Bookkid, we’ll read a book together or browse the website of Sesame Street on my Macbook. This means I do not have to get up. But at other times I can’t resist his charms and his ‘Come on, Daddy”s. Then we’ll go up to his room where, sitting down, I play along with whatever game he thinks up with his stuffed animals or dinosaurs. What we love to do most though, is wrestle on the big bed, build a ‘pillow tower’, do somersaults and of course hide under the covers when Mama walks up the stairs.

We both feel a whole lot better after that.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, February 2010

Published in: on February 28, 2010 at 9:54 am  Comments (1)  

Anonimity

A new world has opened up to me, now that Bookkid is going to school. In fact it’s like visiting a different country. There are many aspects that are different in this land. You venture there with fellow travelers, by bicycle, by car or on foot. The weird thing is that the borders are only open during specific times and sometimes they close this country for weeks at a time! Fortunately they speak the same language, but they have a distinct accent. The inhabitants seem to communicate with instructions, often in a child-like manner. Visits are limited to about five minutes a time, unless you belong to a certain age segment of the population, in which case you spend a big part of the day there. Outside this segment, a visa is issued to people who have specific training.

Generally you start school with a clean slate, nobody knows who you are. The school and the child discover each other with an open mind. And the same applies to the parent. The staff at the school, the other parents and the kids, do not know what you do, what you have done or who you are. In my case this means I am a tourist visiting a country where nobody knows I have Rheumatoid Arthritis. Obviously when I meet someone for the first time, they do not know I have this disease. And walking around town it is, fortunately, not apparent that I have RA.

The situation at Bookkid’s school is different. Here we have a large group of people who I’m getting to know and who do not know I have RA. Standing outside the school with the other parents, I blend in the crowd. Undoubtedly a time will come when this news will become known, probably during a teacher-parent conference or any volunteer work I will participate in. But I think I will try to delay that moment for as long as I can. I enjoy my brief visits to this country where I have no RA. I enjoy the RA-anonymity.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, February 2010

Published in: on February 3, 2010 at 2:22 pm  Comments (4)  

Walking past open windows

“You keep skirting the darker subjects,” Ketchum told him. “You have a way of writing around the periphery of things.”
“I do?” Danny asked him.
“You do. You seem to be dodging the squeamish stuff,” Ketchum told him. “You’ve got to stick your nose in the worst of it, and imagine everything Danny.”

This excerpt from John Irving’s latest excellent novel, Last Night in Twisted River, reminded me of something Boekgirl said to me a while back about my blog. The posts I have written are about my discoveries, my insights and in some cases, victories, but not about the horrors of RA. Like Danny I have maneuvered around the periphery of my subject, while I am very much aware that, in my writing, there is a lot to harvest from the darkness of Rheumatoid Arthritis. But it is not easy to write about.

I had a painful Christmas this year. Literally. An RA-induced pain. On Christmas day I was not at my best, I was experiencing more pain and stiffness than usual, and I was very tired. It was hard to get going. We were spending the afternoon and evening with Boekgirl’s family, but ended up arriving there late afternoon, because I was moving at a slow pace. Being with the family was great, the food was good and everyone was in good spirits. Quite often when I flare up like I did during Christmas, my mind is closed off. I can’t think clearly and I find it almost impossible to communicate effectively, because it seems my brain is using most of its capacity to deal with the severe pain and fatigue of the flare. Fortunately this time, my mind was operating at an adequate level. Like last year, I was in charge of taking a picture of the whole family and that went well too. But after dinner I felt we had to leave soon, I felt the flare was ready rear its gruesome head and by the time we got back home, it did. The logical thing to do in this case, is to get to bed, but somehow I do not move. There is too much going on in my body to attempt to sleep and I nodded off after midnight on the couch. It was two in the morning by the time I went to bed.

Boxing day was my try-to-get-through-the-flare-day. All I could do was lie down, either on the couch, but most of the time in bed. I rated the pain an eight on a scale of one to ten, one being pain free and ten being hell. I felt it most in my feet, knees, fingers and wrists. Standing for more than five minutes was excruciating. Like the day before, my mind was functioning reasonably well and that made it a tad easier for Boekgirl; we were able to communicate. But this situation did mean she would have to do everything in the house that day. Bookkid had a more difficult day. He’d been bouncing of the walls the past week anyway and on this particular day I found it hard to be patient with him when he was not listening.

In a way I was happy with the pain. the pain was keeping my brain occupied. The pain stopped my brain from thinking of the impact of RA on my life. It stopped me from realizing that I could not take Bookkid to the train museum, the day was after all perfect for it. The pain kept away the thought that this disease would at times prevent me from doing fun stuff with my son and that I would have to tell him regularly that Daddy has RA and has a lot of pain and can’t play. It’s a good thing I was not thinking of any of these things that makes being a Dad with RA very tough. That would just get me down.

I am a big fan of John Irving. Like Dickens, he is a great storyteller. I admire the way he writes and love the characters he creates. My favorite Irving novel is The Hotel New Hampshire, and it is in this book that the Berry family repeatedly tell each other to keep passing the open windows. I interpret this as trying to stay on your chosen path and not being tempted to venture of it, which at times seems easier. Like Irving himself said in a recent interview, his books remind me to be grateful for the people I have around me, who love me and stick with me through the good and the RA.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, December 2009

Published in: on December 27, 2009 at 11:00 am  Comments (5)  

Waiting Rooms

Waiting Rooms

A hospital waiting room is one of those places where you can watch people work. Doctors, nurses and other hospital staff walk swiftly by the waiting areas with a definite purpose in their stride. This is their turf and boy, do they make a show of it in the way they walk. They always seem to be in a hurry, their white coats fluttering in their self-created vortex, barely having the chance to acknowledge the waiting patients, let alone greet them.


Photo courtesy of Cadtek Design LLC © 2008

If you’re lucky, your specialist has a waiting room with a clear view of the receptionists’ desk. You get to see them in their natural habitat; on the phone, working on the computer, updating charts and they even find time to deal with patients. The receptionist does all this work in an efficient, swift and somewhat disdainful manner. And they seem utterly unaware of the people waiting to see their boss. You’ll never spot them looking glancing into the waiting area, I mean come on people; they must know there are patients out there!

The waiting room is filled with people reading, playing with their mobile phones, fidgeting, looking bored and, well, waiting. Some of these people look calm, but beneath the surface they are a bit nervous. In fact all of them, patients and companions, seem unsettled. It’s never a picnic. Yet if you do a David Attenborough and observe them closely, you will distinguish different types of ‘waiters’.

There are the ‘static waiters’ who generally have their arms crossed and barely move. You have the ‘casual reader’ who nonchalantly leaves through a magazine or newspaper, tosses it on the table, looks around, smiles at one or two people and then sighs.
The ‘leave-me-alone reader’ has brought their own book and is so engrossed in it that they not only shut themselves off from the others, but they also don’t hear the doctor call their name when it’s their turn.
A rare species are the ‘manic-reading waiter’, they try to read every magazine or newspaper in the waiting room before the specialist calls them in.
A common occurrence in this habitat are the ‘chatty waiters’, who longingly scan the waiting room trying to make eye contact, so that they can attempt to strike up a conversation. Their challenge lies in trying to maintain said conversation.

The ‘posing waiter’ makes a great show of crossing and uncrossing their legs repeatedly and supporting their chin with their hand, while leaning their index finger against their cheek and resting the other fingers on the upper lip.
And of course there is the ‘fussy parent’ who insists on wheeling the pram into a cramped waiting room, taking up three seats with coats and bags and shushing their child unsuccessfully.

But a child will brighten up a waiting room; people will break into a smile and attempt to make a connection. I took Boekkid a couple of times with me on a visit to the doctor’s office when he was still in a pram. He was still a baby and was not that aware of his surroundings, but I am sure he sensed my nervousness. I have not taken him with me since then, somehow the time does not seem right to introduce him to this side of me. But I am sure there will be a time when he will accompany me and perhaps we can see how many ‘waiters’ we can identify.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, November 2009

Published in: on November 19, 2009 at 10:34 pm  Comments (3)  

Groundhog Day

Bookkid went to school for the first time this week. In fact it was his first “practice” day. He actually starts on the 27th of November, the day after he turns four years old, but he gets to go to school five mornings before that, so he can get used to the new surroundings, the other children and the teachers.

It was strange standing outside the school with the other parents, waiting for the doors to open. You could distinguish us from the other Mums and Dads though, Bookkid had both his parents with him and I was packing my camera. But I think the most notable difference were our happy faces, beaming with pride. And Bookkid did do us proud. He was literally jumping up and down with excitement. We had been to the school the day before, so that Bookkid could meet his teacher and see where his classroom, toilets and such are. He also got to pick out a sticker to mark “his” chair and coat hook.

Bookkid's chair at school

When the doors finally opened he literally pulled me inside, hung up his coat on his hook, went inside his classroom and immediately found his chair. Preparing him for school had apparently paid off, because there were no tears when we kissed Bookkid goodbye, well no tears were shed by Bookkid…

His teacher brought him outside to us at noon and obviously we were very pleased when she reported to us that Bookkid did very well. In fact he collected his first compliment from her, she called him a “kanjer” (a star), which confirmed my belief that my son is indeed not only gifted, but also a genius…

I like Bill Murray’s acting work. There are few comedic actors that can keep such a straight face when absurd things happen to them. So I watched Groundhog Day when it was on television a few weeks back, and as usual Murray cracked me up. But while watching it this time it dawned on me that I experience regular RA-Groundhog Days. At least that’s what it feels like after six years of having RA. I have this Groundhog Day feeling most when I have a flare. By now I have had many flares and the last few times I had one, it felt as if history was repeating itself. I experience the same sensation when my knees play up the day after I was on my feet for a longer time than usual.

I think everybody experiences Groundhog Days in one way or another in their lives, and that is to be expected. We all have certain routines or go to certain places at fixed times, it is inevitable. And on this level I will be experiencing many Groundhog Days once Bookkid really starts school. But RA-Groundhog Days are on another level, because it makes the RA very definite. It makes me realize, I’ve been through a lot of the aches and pains and flares before. It makes me feel like an RA-veteran. And strangely enough, that is a good thing, because it gives me confidence in dealing with RA. I know I bounce back after a flare. I know I will feel better, once the flare is over. I just have to be (a) patient.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, November 2009

Published in: on November 8, 2009 at 10:59 am  Leave a Comment  

Sweet Goodbyes

Yesterday Bookkid (my son) and I were playing with his blocks. After having built yet another tower, he turned the block container upside down, fetched his drum sticks and started drumming. He told me we were going to sing a song, you see as any three year old he does not ask much, but he sure tries to order everyone around a lot. Obviously he picked his favourite song of the moment, ‘Sweet Goodbyes’. I wish you could hear him sing this song, because it melts my heart and creates one of those incredible moments when I forget I have RA.

Boekgirl (my wife, this is her twitter alias) and I love music and have managed to pass this passion on to Bookkid. We put on music we enjoy and Bookkid enjoys listening to it too. Since he was a baby I sang a song to him before he goes to sleep. Besides nursery rhymes like ‘Baabaa black sheep’ and twinkle twinkle little star’, I would sing ‘love me tender’ and ‘wonderful tonight’ after which he would often fall asleep. As a parent with RA, music is a great tool to connect with your child. Whether you play music or sing a long with or without Singstar on the Playstation, physically it is not taxing. And sometimes, RA-permitting, we get our feet on the floor and ‘Shake it like a tail feather’ to Ray Charles.

‘Sweet goodbyes’ is the latest and final release of the Dutch band Krezip. They reached world fame in Holland in 2000 with their single ‘I would stay’ and have not looked back. Sadly they decided to call it a day and the band gave their final performance two months ago. Krezip created their own great sound, powered by the amazing voice of Jacqueline Govaert. Her performance in their slower songs gives me goosebumps and none more so than with ‘Sweet goodbyes’.

It is a song that tells the tale of a difficult change in a person’s life and that person is consoled by the performer. It would be a perfect sound track for Daily Strength, because the comfort and warmth conveyed in ‘Sweet goodbyes’ is offered by my friends and all the other members on DS. In fact this applies to all friends and family who supported and helped me in dealing with RA. But even though Krezip released this song last year and found the right words for it, I don’t believe they were the first to do so.

Boekgirl has been singing this song to me since I was diagnosed with RA. She has done this by being there for me every single step of the way, supporting me through the good, the bad and the very bad. She’s had to deal with the fact of becoming the breadwinner of the household, while running it as well. She’s had the vision and determination to start her own business, successfully, while consoling me on not being able to work the way I was used. And besides being a great mother, she is my rock. Without her there would not have been dadwithra.com. Thank you Boekgirl, I love you.

Watch and listen to ‘Sweet goodbyes’, it’s a live version, so the sound quality could be a bit better:

Can’t sleep ’cause everything’s changing
You don’t want to leave things behind
Can’t breath ’cause too many things going on going wrong in your life

Tears in your eyes
Sweet goodbyes
I know how you feel right now
Losing dreams you’ve come to care about
I know what you need right now
You need to come on home so I can hold you tight
Get you through the night
I’ll Get you through the night

Wake up the sun’s shining bright lets go out of bed into the light
Shape up we won’t forget still there’s lots of love left to hold tight

Tears in your eyes
Sweet goodbyes
I know how you feel right now
Losing dreams you’ve come to care about
I know what you need right now
You need to come on home so I can hold you tight
Get you through the night

Everything I love between us will get us through the night
All the things we lost will teach us see
The pretty things in life
All the places that we’ve been to
The people we relate to
All the love that we give in to

Blow the tears from our eyes
Sweet goodbyes
I know how you feel right now
Losing dreams you’ve come to care about
I know what you need right now
You need to come on home so I can hold you tight
I know how you feel right now
Losing dreams you’ve come to care about
I know what you need right now
You need to come on home so I can hold you tight
I’ll get you through the night

Thank you for your time, take care of yourself and remember to keep passing the open windows.

© Ferhaan Kajee, September 2009

Published in: on September 2, 2009 at 10:31 am  Comments (1)  
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