Wandering Thoughts

April 25, 2010

The Arthritis Diary (updated)

Filed under: Aortic Valves,Reactive Arthritis — terence @ 1:01 pm
Tags:

Feb 1999 – Catch dysentery in the Cape Verde Islands. Unpleasant but, as these things go, mild enough. So mild that I wait until I’m back in Portugal to see a doctor.

March 1999 – See a doctor in Figeira da Faz but, seeing as my stomach now seems settle, don’t both taking the antibiotics he prescribes.

March/April 1999 – Now back in London and my body starts doing very strange things. The baseball size knees being the most quantitatively disturbing. See a number of doctors before diagnosed correctly with Reactive Arthritis (ReA), but then receive excellent care. Have a frightening run in with what I think is Iritis but what the ophthalmologists decide is cold sore virus in my eyes. Iritis can damage your sight and my symptoms were textbook. It’s also a common complication of  ReA. Over this time the most inflamed joints are my knees and parts of my spine.

April 1999 – December 1999 – Taking nothing more than Ibuprofen (and a short course of antibiotics to clear the initial dysenteric infection; along with a couple of knee drains and steroid injections early on in the piece which only provide short term assistance) I slowly but surely get better. I notice that the rate of improvement increases as I reduce the Ibuprofen dose.

December 1999 – early 2002 – Effectively in remission, with only the mildest of symptoms. Able to travel to Greenland, trek in Patagonia and surf my socks off.

Early 2002 – a quick, two or three day, and relatively mild flare-up. Gone as quick as it came.

Mid 2002 – start to get more arthritic during the busy final month or so of my work. I’m also partying quite a lot and dealing with insomnia. No new infections though. The return, as is often the case with ReA is spontaneous – maybe triggered by lifestyle/fatigue. Worst joints – lower spine and knees.

Mid 2002 – Away for a week’s surf trip up the NSW north coast arthritis abates quickly but then returns upon return to Sydney and back to work.

Mid 2002 – I quit my job and go backpacking round Australia. At first the arthritis seems to be improving but then a long tramp around Mungo National park brings it back with a bang. Rightly or wrongly, and increasing pain, I continue my planned travels around Australia. Worst Joints – lower spine and feet. Knees now more or less fine.

Late 2002 – return to New Zealand. See a Rheumatologist at Hutt Hospital who proscribes Methotrexate. Frightened by he potential side effects of the drug, deterred by the lack of consultation around this decision, and not keen to admit my condition might be chronic, I don’t take the methotrexate. Instead I seek out another Rheumatologist who prescribes minocyline.

Early 2003 – Shortly after starting the minocycline begin a steady improvement. And start surfing again.

Early 2003 – Probably surfing too much in fact. I notice after long surfs the arthritis gets worse for a few days. Keep surfing though until…

About June 2003 – Relapse in the space of about an hour one evening. Literally I sit down to watch TV and then struggle shortly afterwards to get back up again. The arthritis had never fully gone away but now it was severe enough to stop me from surfing again and make life generally pretty difficult. Worst joints: feet and lower back.

June 2003 – September 2003 Rheumatologist adds clarithromycine (sorry I’m spelling the med names wrong) into the mix. Once again start getting better. Am surfing again by November.

December 2003 – Another relapse, this time overnight. Sometime around now try adding Cipro into the antibiotic mix -doesn’t help. Worst joints: back and feet. Particularly my plant-fasha (sorry also spelt wrong) muscle in the base of my right(?) foot. Spend time on crutches.

October 2004 (I think) – Start Sulphasalazine. Well enough to surf within a couple of months although definitely not rid of symptoms. I have to surf wearing a shoe to ease the pain in the base of my feet.

June or July 2005 – Another relapse – this time maybe actually the result of ear infections caught surfing. The worst relapse to date. Back on crutches, taking prednisone and close to being immobilised.

July 2005 – March 2006 – Some improvement but it is very slow. Definitely not well enough to surf. Struggle to hold down a 3 day a week job.

March 2006 – visit doctor and naturopath in Melbourne. They tell me to cut all grains but rice from my diet and also to eliminate dairy too. Prescribe different antibiotics.

October 2006 – I surf again. I can still remember how happy it felt to stand on that first wave at Titahi Bay. The naturopath and doctor’s advice/prescriptions seem to have worked. Certainly from March to October got much more quickly better than I had been.

October/November 2006 – Notice that I am very easily puffed surfing (and doing other exercise). Figure that I am just unfit.

December 2006 – surfing a lot.

December 2006 – November 2007 – Arthritis very close to being in remission. Am well enough to surf and hike (my feet are absolutely rid of inflammation – which is amazing). This period of remission is longer and stronger than all those preceding it other than the 1999-2002 remission. The only evidence of continuing disease is that if I surf too much I’m sore and inflamed for several days afterwards.

November 2007 – the doctor in Melbourne notices a funny pulse on my neck, sticks a stethoscope on me and informs me I have aortic regurgitation. Arthritis still fine. I’m worried about this and, on return to Wellington, hop in the queue to see the cardiologist at the local hospital, but I’m not that worried. My symptoms seem so mild (just a bit of breathlessness).

February 2008 (I think) – see cardiologist who informs me I’ll need open heart surgery to replace my aortic valve and ascending aorta.

May 2008 – cardiologist tells me I need to stop surfing. And that I must go easy on my heart. Arthritis still fine.

August 2008 – have surgery. Make a pretty good recovery. Worst lingering side-effects being to do with my memory.

November 2008 – Bang. Overnight. From being just a little stiff one day to unable to dress myself. Arthritis is back and I’m broken. No new infection.. No obvious cause. Maybe frustrations and stress at work plus a delayed response to the shock of surgery? Worst joints back as always; right knee; left hip; right ankle. The worst my arthritis has ever been.

November 2008 – May(ish) 2009 thanks first to Ibuprofen, panadol and tramadol, and then prednisone I manage to keep working somehow. Not a fund period of time. I try a large infusion of methlyprednisolone (spelt wrong of course). Helps but only for a few days.

May 2009 – finally take the plunge with Methotrexate. Something I should have done months earlier. It helps almost straight away and, in the absence of significant side-effects Rheumatologist increases dose to 25mg/week.

August 2009 – I surf again but it’s not like previous returns to the water. I’m very, very fragile. And the improvement doesn’t continue.

August 2009 – December 2009 I’m just well enough to surf and that’s about as good as I get, with fluctuations as described in this blog.

December 2009 – doctor/naturopath team in Melbourne (who I’ve still been seeing but who haven’t been able to repeat the magic of 2007) advise me that I’m actually a lot better and can try reducing my methotrexate dose. This seems like very bad advice but, out of interest, and because 25 mg a week is starting to knock me around a bit I reduce my does to 20mg (with the consent of my Rheumatologist in Wellington). To my surprise I seem to get a little bit better.

Feb 2009 – Quit my job. Flat tack busy preparing for shift to Australia. Manage to longboard (surf) quite a bit. I’m still very fragile but doing better than on previous efforts. Maybe only because I’m riding easier boards though.

March 2010 – To Australia. Maybe a little better here. Have tried lowering Methotrexate to 15mg per week. So far I haven’t gotten any worse for it. Will see what happens over next month and a bit. If still no worse will try lowering again and if this doesn’t cause problems will return to people in Melbourne for another try. Suffering from vertigo a bit and still struggling with post-surgery memory issues. On the other hand: enjoying longboarding down the South Coast.

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19 Comments »

  1. I can’t believe after years of searching I’ve found somebody who has experienced nearly all of what I have, the diseases, medicines, and the heartbreak of long stints not being able to surf. I, too, have lived all over the world. My home is in Chicago. I was in grad school at the time. So I surfed Lake Michigan after a storm, smoothed out windswell with periodicity approaching what you’d find in the ocean.
    I got dysentery in 2004. It was followed by bouts of throwing up blood. While running the New York marathon in 2005, I fell down and noticed I almost could not get up. I finished the race in great pain and was unable to walk for a long time. First my ankles went, and then my feet. A complication you did not have is that I developed nerve tumors behind my spine which throw off my balance. All have been benign so far. I was hospitalized for cellulitis and the pain has been terrible. I can’t list all of the drugs I take, but I do weekly injections, as well. My Immunologist feels I the injections have greatly slowed the Reactive Arth. progress. But yesterday an orthopedic surgeon told me there is “no hope” for my right foot, he wants to see me have my ankle fused. This is DEATH to a surfer. Methrtraxate, Embrel, Ultram, etc. etc…..
    I AM going to longboard at San Onofre in easy waves this year, I AM DETERMINED. I will not have my ankles fused and I will overcome this. With great pain I carry my board to the water and am up to paddling one mile per session, but no popups yet.
    Can you give me ANY suggestions? How about psychological? How do your surfing friends treat you now? Do they understand, at all? How do you exercise? What about motion? Pain?
    As far as my traveling, yes, I’ve surfed Africa and some remote places. I’ve also UNFORTUNATELY ingested some very very germ filled water.
    Thanks

    Comment by Craig Kemnitz — July 17, 2010 @ 1:02 pm

  2. By the way, the iritis almost blinded me in both eyes. Surgery saved one and drugs saved the other.

    Comment by Craig Kemnitz — July 17, 2010 @ 1:07 pm

  3. Hi Craig,

    Good to hear from you. Sorry to hear about your battle with ReA though. I’m about to head out now (middle of the day here in Canberra). But will aim to reply to your questions with a comment on this thread later today or tomorrow. Also I’ll send you an email. Please let me know if the email address you entered in with your comments is not a good one for me to reply to.

    Cheers

    Terence

    Comment by terence — July 17, 2010 @ 1:20 pm

  4. Hi again Craig,

    Now for a slightly longer reply:

    Once again sorry to hear about what you’re going through. I can empathise. It’s not easy being a surfer out of the water. Harder still to deal with chronic illness. And even harder than that to deal with permanent joint damage.

    I think we’ve got one additional similarity that you won’t read in medical textbooks: the fact that intense exercise in the wake of illness set our arthritis off. For me that exercise was manual labouring in London (first time) and a 40km one day walk in outback Australia the second time.

    To answer your questions:

    Can you give me ANY suggestions?
    First: as I say to everyone – my advice is no substitute for that given by a medical professional. Please bear this in mind.

    Have you tried long term antibiotics? Orthodox rheumatologists tend to shun them as a treatment for Reactive Arthritis but there is some credible empirical evidence in their favour and my experience has been that, to a degree, they appear to have helped (exceptionally well sometimes, not so well others). The place to start in your search for information on anti-biotic therapy is http://roadback.org/ (the Roadback Foundation). Some of their stuff strikes me as flaky but, if you email them, they’ll give you a doctor list and off that you may be able to get hold of a good doctor willing to try antibiotics. If other approaches aren’t working perhaps it’s worth a try for you. I think it’s helped me.

    Second, you mentioned that you’re being injected once a week: is this with TNF inhibitors? If not they’re worth looking into. They are a new class of supposed wonder drugs for some types of arthritis. They also come with some side effects, which has put me off trying them for now. But a friend of mine with Rheumatoid arthritis swears by them – they keep him in the water. (Oh – actually just looked online: seems like Enbrel might be a TNF inhibitor???)

    Third, exercise is (from my personal experience, which may well not be generalisable) a tricky balance with reactive arthritis. A little bit really helps psychologically. But if I do too much my arthritis gets worse. And how much is too much varies depending on how severe my arthritis is: when it’s really bad a short walk will be enough to increase my levels of inflammation.

    So my advice on exercise is to be careful not to do too much. It may even be worth resting up for a bit and seeing if that helps??? Being very kind to my body (taking it easy) seemed to help me slide into remission the first time. Although not so much since. What has remained constant for me is that too much exercise makes my arthritis worse.

    Of course no exercise isn’t much fun either. And I’ve found that – other than when I’m really acutely inflamed – gentle swimming helps.

    How about psychological?
    Short answer: it hasn’t been easy. Longer answer: I’ve really struggled psychologically at times. I have three pieces of advice re the psychological collateral damage of chronic disease. (1) Don’t be afraid to get professional help if you need it. I’ve had a little bit (therapy) and it’s been of assistance.

    (2) I’ve really benefited from the support of my wife (which is more of a statement than advice but it’s certainly been a factor which has helped me).

    (3) Find ways of enjoying life within the constraints that illness imposes on you. For me this has approximately followed the pattern of: (a) (when illness at its worst) going for drives to beaches/coastal areas (not many beaches back home) that I like and sitting and reading, or maybe going for a very short walks. (Best to do this when the surf is average – good days can be painful). Doing this helped me because, I think, part of the attraction of surfing for me has always been the subtle magic of the outdoors. So I’ve done what I could to get amongst it – even when it wasn’t with a board.
    (b) Paddling (usually have to be a bit better for this). Just gently: not so much for exercise but once again to be out there, in the sea.
    (c) Bodysurfing. (need to be a bit better again for this). Just in gentle shorebreaks. (Definitely not the Wedge!) Boogie boarding’s never appealed to me, but bodysurfing in the right waves (not too heavy!) has been an ok partial alternative. No nasty jumping to my feet, but still riding waves.
    These activities above may not work for you. But it’s really important to find something. Otherwise, in my experience at least, it was all to easy for my illness to steal most everything I enjoyed in life. Which wasn’t good psychologically.

    How do your surfing friends treat you now? Do they understand, at all?
    This has really varied depending on the person in question. I don’t think any of them actually understands what its like but some of them have been much easier to hang out with than others whilst dry-docked.

    How do you exercise?
    Like I said above. My own personal experience, which may not be generalisable, is that I really really have to balance the exercise carefully: too much makes me worse. So, if you’re like me on this: go easy on your body. Adapt your exercise for your level of inflammation: gentle swimming when very bad, more swimming as you get a bit better, and so on up. At least that’s what I’ve found works best for me.

    What about motion? Pain?
    I’ve found that standard pain killers (ibuprofen and paracetamol) work better the less I take them (but this may be a very personalised response). So I use them rarely, just when the pain’s really bad – particularly to help me sleep well. Otherwise, I’m relying on methotrexate and the antibiotics to help me. (Also – I think Ibuprofin is contra-indicated for Methotrexate – so I only take paracetemol for pain at present). Hot baths help a bit in the short term (essentially while I’m having one).Although my experience living in New York is that not many Americans have baths in their houses. And when my back was terribly inflamed in 2008, ice on the joints before I went to sleep might have helped a bit.

    One other thought
    Have you seen a physiotherapist? They might be able to give you (gentle) exercises to help strengthen your ankle and counter the damage. Surgeons are, in my experience, always pretty keen on surgery (and often they’re right of course) but trying a different medical professional for different advice might help.

    Ok – enough from me for now. Keen to hear more from you. Also, I’ll email you in a second.

    Cheers and good luck

    Terence

    Comment by terence — July 18, 2010 @ 7:53 pm

  5. Oh – one other question. I’d really like to hear more about your balance problem. I’ve suffered on and off from vertigo (sudden room spins and dizziness.) Which no one’s ever been able to explain to me? What have been your balance symptoms? How did they find the tumours???

    Comment by terence — July 18, 2010 @ 7:57 pm

  6. Hi Terence,
    Thank you very much for the e-mail and extensive reply! I will need to take this a bit at a time, I mean answering the questions. But thanks, you have cleared up quite a bit of confusion for me.

    It was initially exciting for me to find your article, because I realized that like you, I have lived in some very primitive places. Like you, I discovered this condition only by accident. The doctors could not figure it out for a long time. It was only after trips to four different medical centers at universities did doctors put the pieces together. An expert from Yale thought of Spondelitis
    and giving me the blood test which tests for the gene marker HLA-B27.
    You mention some pain in your back. Well, unfortunately, in its extreme cases, ReA can spread to the spinal cord.
    Now the way I discovered the tumors was because I noticed a large black and blue mark under my left bicep. I thought it was simply from carrying my board or maybe from the rubbing during paddling. Well, the mark turned into a bump.
    Then the doctor had the idea of taking a biopsy Sure enough, it was a nerve tumor also called a “schwannoma”. Then others were discovered, below my knee, and two more on my leg. These are extremely painful. While being tested during an MRI on the back, it was discovered that I have a large tumor below
    (inside of) my spine. Well, though one of the most painful things I have ever experienced, the tumor was biopsied — with me awake! Fortunately these are all benign. But they hurt incredibly. Schwannomas can become cancerous. Fortunately mine are not. The tumors on my spinal cord MAY be causing some of my imbalance.

    I take daily pain medicine, some of them very strong. It is the only way I can sleep. The strongest one I take is called Ultram. Yes, I do take a TNF injectable and this is supposed to be complimentary to methotrexate.
    The kicker is this: TNFs can cause forms of cancer particularly lymph node cancer. Since I have these schwannomas and have a possible danger of them becoming cancerous, the doctors must be very cautious about giving me stronger TNFs. I must have bi-monthly blood tests to see how the medicines are affecting my kidneys. I take OTC pain killers and ibuprofins on nights when not taking methotrexate. Some of the medicine (maybe cumulatively) makes me sleepy!

    It is nice that you can take walks. In my case, I can’t walk far at all. It is quite painful to walk more than a few blocks for me, which is one reason
    I have trouble getting my board to the water. What I can do, however, is to ride a bike. I ride about 10-12 miles per day and that is decent exercise for me.

    I have a full house here and we have full baths and showers. Most people in America do actually have baths in homes, but in NYC, usually these can be just showers. Another way I relieve the pain is to go swimming at the YMCA and sit in a whirlpool bath.

    I have had no problems since taking the strong medicines for my eyes (can’t remember that one right now).

    Now I am hoping that soon –maybe not right away, we will have a very small day and I will be confident to try to actually surf. I will need to try this alone. I think it would be disheartening to be with other surfers. Or people might mistake me for someone who decided to take this up in a later stage of my life ?? (I’ve been doing it a long, long time!)

    I had a frined who became impatient waiting for me to tell him I was ready to go out for a paddle. But I think I have to attribute this to the fact that few people understand this disease… and it is sort of rare.

    Have you been able to narrow down the original cuse for all of this? If it was the water, how did you do it? Or is that a theory?
    Thank you very much for writing to me!

    I know I will have more questions. If you can think of anything to ask me, please do! Also, I wish you a very speedy recovery and many many waves in your future!

    Comment by Craig Kemnitz — July 20, 2010 @ 1:16 pm

  7. Hi Craig,

    Thanks for writing back. Sorry to hear of everything you’ve been through.

    Funnily enough, there have been times in the past (times when my feet were really arthritic) when I used to cycle for exercise too – because I couldn’t walk far. Now my situation is somewhat reversed: walking is easier than cycling (because of my hips I struggle to get on a bike – can only really do so if using a ladies bike). Have you ever tried reducing the amount you cycle/exercise? (not cutting it out altogether though). Like I said, overdoing it is definitely counter-productive for me. Of course Reactive Arthritis is a very person-specific disease (or, at least it seems to be) so my experience may well differ from yours. I’ve made plenty of use of whirlpool baths/spa pools in my day too – when the pain is bad it’s a godsend being able to float unweighted and warm, and more or less free of it.

    In terms of how I found out I had Reactive Arthritis, the story is as follows: I caught dysentery in the Cape Verde Islands in 1999. As far as dysentery goes I wasn’t actually that sick. I didn’t throw up and I didn’t even feel that ill. But I did have extremely painful trips to the toilet and was passing blood.

    After a few days the dysentery more or less passed, and I flew to Portugal and then London, where I was planning to work the summer. On arrival in London, and absolutely broke, I picked up a labouring job digging ditches through a friend. This was hard work. And after a few days of this my back started to ache in a really funny way. I also came down with conjunctivitis. My back I figured was just injured and my eyes one of those things which happens when traveling. Next thing I know though I’ve got circinate balantitis (definition of circinate balantitis: strange things happening to parts of your body where you really don’t want strange things happening). This sent me to the doctor in a hurry and then the local hospital where they incorrectly diagnosed me with Herpes. It wasn’t until my left knee swelled up big time, and I went back to hospital, that I was correctly diagnosed with Reactive Arthritis (ReA). This diagnosis came from a Genitourinary medicine (GUM) specialist (who I was seeing because of the location of the circinate balanitis). In this I was lucky: Reactive Arthritis is more common as a complication of chlamydia than it is of dysentery – so I just happened to be seeing a doctor who had some experience with the illness. So he picked it where others had missed it. He then sent me to the rheumatology people who (a) tested my gut (and found salmonella bacteria there – the source of the dysentery and also a classic trigger of ReA) (b) tested me for HLA-B27 (positive). These two additional bits of information confirmed my situation and from then on I was correctly treated.

    As for how I caught salmonella – in the developed world it’s a disease associated with chicken and eggs. Apparently in developing countries the bacteria can be found anywhere. In my case I probably got it from the water because (crazy as it seems) at times in the Cape Verde islands I was drinking untreated water (the islands are actually pretty clean and normally it’s safe). I don’t know this for sure though.

    I’m can empathise when it comes to wanting to try to surf away from everyone else. I feel the same emotion. (Imagine me, a New Zealander, turning up at the nearest beach to where I now live in Australia, lugging a big blue learners’ board hoping the locals will take pity on me). But…I really try not to worry about this. And I reckon that, if at all possible, you shouldn’t worry either. Just get out there if you can. Also, one benefit I’ve found of being reduced to near learner status is that I can have fun on the waves no one else wants. So I’m out there on smaller days, when it’s a bit less crowded…

    Ok that’s all I can think of for now. Good luck, good surfing and let me know how you get on.

    cheers

    Terence

    By the way – all the arthritis posts I have written on this blog are here:
    https://wandermythoughts.wordpress.com/category/reactive-arthritis/

    Comment by terence — July 20, 2010 @ 7:10 pm

  8. Hi Terence,
    Well, in the last two days I went through another bout of depression. Well, in my case, I start feeling as if I can’t do anything right and everything goes wrong. This is particularly costly because I am in the financial industry and trade. Extreme self confidence is quite important because the nature of trading is one of having lots of small losses and profiting from much lager winners. That alone is psychologically taxing. But add to the the inability of walking a block to the corner store for some beer without using a vehicle makes one seem helpless.

    I think I am going to do as you’ve done and start documenting all of this. For instance, just having a re diagnosis and a change in the frequency of a medical prescription can be taxing. Somebody doesn’t get it right: the druggist, the relaying pharmacist, the insurance company, all of this. and the burden of “proof” is always on you to prove that you, indeed, know what the doctor told you he or she wants to do.

    I’ve found that living where I do exacerbates the pain I feel from ReA. Chicago has extremely volatilile weather and is prone to tornadoes and huge low pressure systems. The arthritis index is documented online and the higher it is, the more pain I feel. We have highs that can run into the high 90sF or even 100F with 80%+ humidity and in the winter it can get down to -10F and even -25F. Temperatures can fluctuate as much as 30F in a day and low level hurricane force winds (75 mph) happen despite the fact that we live in the center of the country. No, I don’t want to move to the desert. And moving away from the water would be terrible for mhy state of mind.

    I do moderate the bike riding I do when i have to. That is, if I wake up in much pain, I am a bad American and drive to work ;). Using the subway currently involves too much walking for me because the subway is one block from my house and 2 1/2 blocks from the office. That sounds lazy, doesn’t it? It also involves climbing flights of stairs, which I can do only painfully. When things get really bad, I use crutches.

    Thanks for all of your suggestions. As you said, ReA affects everyone uniquely.
    I really do have further questions but right now can’t think of them.
    Take care and feel well!
    craig

    Comment by Craig — July 23, 2010 @ 6:13 am

  9. Hi Craig,

    Just quickly – if you are suffering from bouts of depression professional help is really worth considering. I found Cognitive Behavioral Therapy (wikipedia: http://en.wikipedia.org/wiki/Cognitive_behavioral_therapy ) pretty helpful (albeit not a panacea) it doesn’t typically involve medication but rather finding tools for breaking negative thought patterns. CBT is the typically offered by psychologists (rather than psychiatrists or psychoanalysts). And maybe worth a look?

    Driving to work’s fine. It’s the only way I managed to hold down my last two jobs. Cars aren’t good for the environment but if there’s anyone who has a legitimate excuse to drive one, it’s a person suffering from a condition which limits their mobility.

    Funnily enough, weather doesn’t seem to effect my arthritis (which is good as my home town is Wellington – one of the few places on Earth with weather nearly as bad as Chicago) but I did meet a guy once who cured his osteo-arthritis by moving to Queensland.

    Any chance you could afford to take a six month holiday to somewhere in Central America? No stress, a small beach break out front, warm weather, and the opportunity to take life at your own pace?

    Take care

    Terence

    Comment by terence — July 23, 2010 @ 11:39 am

  10. Hi Terence,
    I sure wish I could take a long, long trip right now. But, the disease has greatly limited my ability to work and my finances suffer. Also, I am paying off hospital bill co-pays. Obama supposedly put us on a system whereby the government takes over and supplements our medical care costs. Well, it is a miserable failure. My co-pays went up by multiples. So for instance what my insurance plan would have covered previously are now minimally covered. I can’t wait to throw him out of office and wonder how many payoffs he took to force this on us, but that is another story. I owe thousands to a hospital as a result. Also, there is the matter of having a wife and three small boys. At least my quiver will never go to waste!
    You’ve hit the nail on the head about the psychology of a person’s reaction to the disease. For instance, being a surfer, I always was an ardent environmentalist. I was very very impatient with people who did not walk short distances or take mass transit or do something as simple as ride a bicycle. Well now, my options are limited. You rightly point out that a disability makes it such that it becomes a necessity to sometimes use things very much bad for the environment to just get around. I always wondered why the government should go to the expense of installing escalators on our subway station because so many Americans are obese. Well, I realize some people really do need to have them, at least now.
    I looked at the links you provided. I will go about trying to read as much as I can about some of this.

    The most important thing for me now is to maintain a positive mindset. The small amounts of exercise I can accomplish certainly helps already!

    So Wellington has bad weather, too? Chicago on a crisp cool day in autumn is almost like being a few steps short of St. Peter’s gates to heaven. But in mid January,
    is can also be one of the levels of hell just short of the entrance!
    Craig

    Comment by Craig — July 27, 2010 @ 3:55 am

  11. Hi Craig,

    Sorry to hear about the financial stresses on top of everything else. And sorry to here Obamacare has made things worse for you. I guess I’m lucky insomuch as that both Australia and New Zealand’s health systems keep my bills fairly low (no one would insure me now – so I rely on the state and my parents as ‘safety nets’). That being said, I’d still struggle to take a six month holiday (despite the fact that it really feels like I could do with one right now too).

    As for Wellington’s weather. The tongue-in-cheek saying back home is that “you can’t beat Wellington on a good day.” Which is true: on a cool, calm, clear winter’s day it’s one of the prettiest, and most pleasant places I’ve ever been to. The joke, however, is that, in an average winter, we get about 3 or 4 days like that over the 4 months. Otherwise, the weather is in your face. As for summer…by my calculations summer is something that occurs in Wellington every two years rather than annually.

    On the other hand the surf’s quite good once you’ve figured out the weather patterns. And, even the storms have a beauty in their way. Which partially makes up for the discomfort factor.

    Good luck with everything. As always I’m really happy to answer more questions in the future.

    cheers

    Terence

    Comment by terence — July 27, 2010 @ 10:27 am

  12. Hi Terence,
    I guess I just got some good news. My general practitioner is recommending that I be sent to one of the main research hospitals that does work in podiatry. They are indeed looking for methods of arthroplasty (ankle replacement).
    I don’t know how successful these surgeries are, but I need to look into it further.
    You are lucky to be in such a wonderfully surfable place. Surfing a Great lake and figuring out the fickle weather is extremely challenging and a function of experience.
    Again, thanks for all the info And, I too, if I can be of any help, I’d be happy to do so!
    i will work on my state of mind. Dreaming of surfing always helps!
    Craig
    http://www.absolutemichigan.com/dig/recreation-sports/boating-diving-beaches/michigan-great-lakes-surfing-capital/

    http://chime.tv/#u/farlane/absolutemichigan/267vc

    Comment by Craig — July 29, 2010 @ 8:31 am

  13. […] Filed under: Surfing — terence @ 11:07 am Tags: Surfing, The Great Lakes Under the arthritis diary I’ve been chatting with a fellow surfer and arthritis sufferer, who happens to live on the […]

    Pingback by Lake Envy « Wandering Thoughts — August 14, 2010 @ 11:07 am

  14. Hi Terence and Craig, I hope you don’t mind me butting in. Great admiration for your courage and determination to enjoy life in the face of these challenges – but then I suppose what is the alternative? I live in Dunedin, NZ and found my way here by googling on low pressure systems and arthritis. I have osteoarthritis in my hip and the pain has been much worse the past few days and I can’t help relating it to the big storms we’ve been having. (Dunedin’s weather is much like Wellington’s but the whole country has been having appalling weather.) I used to be a tramper (that’s a hiker Terence) but that’s out now. Non weightbearing exercise was recommended but after a couple of months of the chlorinated hell going nowhere in the aquajogging pool, I couldn’t stand it any longer. I need to be outside. So I taught myself to ride a bike and I’m now building up a list of places it’s safe for a non-expert biker to go. I can ride with NO PAIN AT ALL and it is such a feeling of freedom compared to my painful lurching gait – like the difference between a seal on land and in the water.
    BTW my ex got athritis in his knee after a bout of dysentery we both picked up in Morocco. The bug was Shigella flexii apparently but the English GP we saw didn’t do anything to treat it and when we had just enough money left to get back to NZ – and no cure in sight – we did so. Russell started developing the iritis and arthritis on the plane home and by the time we got back – yeah baseball sized knee. Fortunately it was just the one joint, one with an old rugby injury which had been operated on eight years previously. The ReA recurred from time to time over several years and probably hastened the destruction of the joint which developed severe OA as well. The good news is that he finally had a joint replacement and is doing much better. The iritis didn’t recur. I’m sorry to hear it has been so bad for you. Also, strange coincidence, he also had a congenital heart valve problem which went undiagnosed until his 40s when it was operated on. His general health improved a lot after that, I guess because all his body systems were getting enough oxygen at last.

    Comment by Meg — September 20, 2010 @ 9:32 pm

  15. Oh I forgot to mention, along with the arthritis and iritis my ex also got urethritis. Both being physios we recognised it as Reiter’s syndrome, but as all we knew was that is could be sexually transmitted we were both looking at each other with suspicion lol … Him saying well it wasn’t ME and me saying well it certainly wasn’t ME … it was only later we learned it can also be related to dysentery. Circinate balantitis eh? What a bugger to have a wrong diagnosis along with everything else.

    Comment by Meg — September 20, 2010 @ 9:47 pm

  16. Hi there Meg,

    Good to hear from you, but sorry to hear about your own struggles with arthritis. Craig’s from the US but I’m a New Zealander (albeit one living in Canberra at present), so I know what you mean when you say tramping.

    Russell’s experiences sound really quite similar to my own, although my knee has only been severely inflamed twice and seems to still be functioning quite well. I don’t suppose there’s any chance his heart valve problem came from the arthritis??? That would place him and I a very small group of ReA sufferers.

    In the case of your arthritis, is a hip replacement a possibility? A friend of mine who damaged his hip skateboarding developed pretty severe osteo in his hip. He held off a long time before getting surgery but since then (since the quite long recuperation period) he’s been doing fine – really mobile.

    I’m glad to hear cycling’s working for you. I struggle a bit with it now, but it’s been a godsend to me in the past. Have you considered riding the Central Otago rail trail? My mother in law did it recently and loved it.

    Regarding the weather, it’s funny, temperature certainly doesn’t effect my arthritis but I think barometric air pressure might do so, just a little bit, with my joints being worse when the air pressure is low.

    Enjoy the riding and I hope the weather gets better soon!

    Comment by terence — September 20, 2010 @ 9:57 pm

  17. Ah yes – the circinate balantitis, that wasn’t much fun at all. My girlfriend at the time was living in the US and I’d just spent the winter surfing in West Africa. I’d been completely faithful, so couldn’t understand how on Earth I’d contracted Herpes. More importantly though, I had no idea of how to break it to her over the phone. All of which added to my immense (and somewhat misplaced) relief when I was re-diagnosed…

    Comment by terence — September 20, 2010 @ 10:01 pm

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