Thursday, 27 September 2018

Rheumatoid Arthritis and Stress...

Everything else Is there something we missed in this year’s prompts?  This wildcard is your place to add it in.  Not everything made our list so be adventurous and take us in a new direction.  Sometimes the everything wildcard is the seed of a new prompt for next year so let your mind roam and see where it goes.  Maybe mindfulness is on your mind?  Or perhaps you have a funny story?  We are all ready to hear the scoop on what is on your mind that was missed elsewhere.

This is one of the 'wild card' topics from the topic list for this blogging event. Today's prompt was about marijuana and it's potential place within treatment protocols. I've never used it, and it's not wildly available here - legally - so as a topic to write about, it didn't resonate with me. The other wildcards included one on doctors and doctor relationships, which I covered to some degree in my first post this week, which you can read HERE. I'd just have been repeating myself - so that was out. Then there was politics... I didn't want to get on my soapbox about that. I'd have got all ranty, because while the political system and climate here are very different to that in the US (THANK GOODNESS!!!), there are still the same non-consultative processes happening that make me cross, and I didn't want to go there today. 

So, I thought I'd take the opportunity to address some of the reasons this blog has been so silent for almost a year. There's been a lot going on, but the common denominator in all of it, for both Dragon Dad and myself, has been stress... It's been an excessively stressful year. 

We made a major interstate move from Sydney to Melbourne two years ago. At the time, Dragon Dad was still working on a new business, a project that ultimately spread over seven years - a major part of our time together so far. It had so much potential on so many levels. Sadly, as can happen, it hasn't come off. Sadly for him, most of all, because he put everything into it, and I do mean everything. We're very broke now, scarily so, and we're having to live very, very carefully. It wasn't anything to do with the quality of his product or his work - it was everything to do with timing, money, and an industry that hasn't changed its methodology for 70 years, and decision makers within it that weren't ready to rock the boat and take on a colossal industry shake up. A revolution, even, because that's what it would have been. 

Naturally, that's been a huge disappointment, but more importantly, it's meant that Dragon Dad has had to find other work, and that's been a mammoth challenge. He's spent most of his life working for himself. He's a visionary, entrepreneurial type. A design creative, a dreamer, but with that, a powerhouse. He's built numerous companies and businesses, and had some huge successes. Grappling with starting over, from a position of having no funds, has been hugely difficult. 

He was given an opportunity to get into real estate - something he's been on the edges of over the years with some of his businesses, and something he's had a sneaking interest in. Beginning in real estate though, is a young person's game. Someone who doesn't have grown up financial responsibilities and bills. We've been living on the edge, just scraping by for a year now, and he's now job hunting for something else that will offer a livable salary and more opportunities at management level - because the thing about real estate is that, while it can offer excellent income potential, it takes TIME...and a lot of time at do that consistently. We don't have time, because we have no reserves to fall back on. 

He started that around this time last year. Then in late November he got sick, and sicker... Getting him to a doctor was a major too many men, he doesn't do doctors... Over a couple of weeks of different doctors in different clinics, because he'd go, and get messed around, because he'd not let me go in with him, and his descriptions of what's going on are terrible - I've been in the ER with him, and he's hopeless - it was a good three weeks before anyone thought to Xray his chest. My nurse friend and I had, by that time, based on his symptoms, diagnosed him with pneumonia, and we were right. The next thing was keeping him at home and resting - because you have to do that with pneumonia. He kept trying to go back to work - a job that means hours of walking the streets, knocking on doors...with pneumonia. He'd come home mid morning, grey and exhausted and collapse into bed, then try again next morning. 

Eventually, he conceded that he needed to rest - REALLY????? And was slowly improving when he had a major kidney stone attack. He makes kidney stones...over and over. We now know why - at least this time, there's been a bit more investigation, so we have a lot more information. But that took the next six months, as he doesn't have private insurance. I do. I have to. It's something that I've held onto no matter how tight our money is. But I've been unable to get him to join up. So, two ER visits later across a few weeks, he was finally admitted, very ill and in ridiculous amounts of pain, and a scan was finally ordered - which disclosed a 9mm stone obstructing his left ureter. The surgical process is to insert a stent into the ureter, then blast the stones with a laser - that monster wasn't the only one in that kidney - then remove the stent when all the pieces have passed. In the private system, that happens over a couple of weeks. Ureters don't like stents much, and for Dragon Dad, the reaction was severe, and caused terrible pain. The public system isn't anywhere near as efficient. They just inserted the stent in that first surgery. Then sent him home to wait for a letter telling him when to go in to have the laser surgery. That took another two months, and then home to wait for the next letter to have the stent removed. Another three weeks...

That got us to the Easter weekend - he had the surgery on the Thursday prior. Just as I was thinking of heaving a sigh of relief that it was all over, I got the call that no mother wants to get - No.1 son's girlfriend telling me that No.1 had had a huge bicycle crash and was in hospital in Sydney. Communication isn't one of her better skills and it took weeks before I finally was able to piece the whole picture together. But he spent three days in the ICU with a bleed on his brain. His collarbone and shoulder were both broken. He had a very nasty gash on his face that had opened up his top lip, requiring plastic surgery. And he'd left an awful lot of skin on the Pacific Highway. He was a week in hospital. Many weeks at home healing physicall, and then back to work in the NSW parliament on light duties initially. Somewhere in that time, he showed up to a job interview with his stitches, bruised face and arm in a sling. They sent him home, and said they really wanted to interview him but they'd rather do it when he was much better. That happened and he got the job - so he's doing well now, and he and his girlfriend have got engaged in the meantime. Twice I needed to get to Sydney - when he was in hospital, and when they had their engagement party. I didn't get there. There wasn't money for flights and being there. I've not seen him face to face since November last year when they were here for a party, and he and I had brunch together. 

So, where did all of that leave me...? Stress and an autoimmune disease are a bad combination. A very bad combination. Orencia had failed for me by the end of last year, and I'd started Xeljanz. So through the beginning of this year, and Dragon Dad's epic kidney stone drama, I was in the first trial period of a new med. The day I saw my rheumatologist for the evaluation, and potential reapplication for a continuation of the prescription, I lost it completely. Poor guy - my Sydney rheumy coped very well with emotional breakdowns in his rooms. I like this new one - he's very good. But he's younger than Sydney Rheumy. Doesn't have as much life experience. And he's Chinese - much more reserved. So it was awkward. I wasn't in any doubt of his sympathy - that was very obvious, as he pushed the box of tissues across his desk to me. But he didn't quite know what to do or say - which was equally obvious. And all I could report was constant flares, increased pain, needing much more in the way of pain meds, sleeping badly, seriously overtired and anxious, and very, very stressed....all of which was triggering the flares. He said that it was impossible to evaluate what the drug was doing - my pathology is never very useful, as my bloods don't typically show much. I left with another apoointment scheduled for three months later, much hope that the situation would be better, and that I would be too.

All the medical stuff - Dragon Dad's and my son's - did ease, of course, by the time I saw him next. But by then, the precariousness of our financial situation had really set in, giving rise to another level of stress that is now a constant... There have been times when it's been a real challenge to do the grocery shopping. We've been paying bills by installment - and our power bill has been a major problem, because it's been a very cold winter and we've had to have heaters on. There have been times when I've struggled to fill prescriptions. That's been confronting. I've discovered just how barely my disease is controlled by Xeljanz, Arava and Sulfasalazine. I'm on the max dose of all of them. If I can't fill a script, I'm in trouble - as I've experienced a few times in recent months. I go downhill frighteningly fast, which is another stress in itself. As I write, I have an empty Arava bottle. I took the last tablet this morning. With the money Dragon Dad was able to get in this week, I was able to get Xeljanz, my anti-inflammatories and the pills to stop those eating my stomach. I still have Sulfasalazine. I have pain patches, and I have enough Tramadol to get me through the next week. 

Not knowing if it's financially possible to fill very necessary prescriptions is awful. Knowing that I've just done a batch of articles but that my freelance boss is terrible at paying on time so that a chunk of money that would make a huge difference to us might be coming, but I don't know when, is awful. Knowing that my bank account is overdrawn again, and getting messages from the bank that I can't answer because there's no money to put it back in the black, is awful. Knowing that even if I could go out and get a job - I'm almost as unemployable as Dragon Dad for many similar reasons - my body would betray me, is awful. Watching Dragon Dad's disappointment and frustration as application after application goes out and he doesn't get offered interviews even - and knowing that if he DID get to an interview, he'd probably get the jobs - is awful. 

There IS light. Dragon Dad's old business partner from the big project is helping us. Other good friends are also helping. I just got some of my watercolours of toys placed in an up-market children's wear shop with two outlets - both in areas with people who have money to spend. The shop owner is hugely enthusiastic and supportive of my work, and if these first ones go smartly, has plans for a number of ways to build up making more of that work happen. And that IS work I can sustain. It won't bring in a living wage, I know, but it would go a long way to help. It would also help my state of mind, knowing I was more able to contribute. 

So, I am typing with monstrously painful hands, my feet are on fire. My knees seize if I sit for longer than 20 minutes... I'm flaring again. And the primary cause of the flare is stress. The key to dealing with stress is to do everything you can to remove the stressors. This is what I advise people in our online support group in my capacity as an admin. I wrote a comment on someone's post about that just this week. I'm not sure quite how to follow that advice for myself when the stressors we're currently dealing with are such basic ones that can't really be ignored. 

I read a lot. I spend more time than I usually would on FB and Instagram chatting with people - it's a wonderful distraction, and removes me from my 'now' to some extent for a little while. A fair few of my online friends are on holidays and are posting wonderful photos - I'm holidaying vicariously with them. I lose myself in my work - and have a session planned for later today to begin a new piece. On the warmer days - and we're now getting a few - I spend time outside in the sun and revel in not wearing four layers of clothing! 

It WILL pass. I know that. Things WILL get better. Dragon Dad WILL find a job that he'll enjoy and want to go and do each day, and that will pay enough to put us in a better position. I WILL stop flaring constantly, because the stress WILL ease. It's just not happening yet. 

Apologies for this being such a long and not very positive post. I wasn't sure, when I started writing, how it would develop. This is the one place where I don't plan what to write - these posts kind of write themselves once I settle into the process. Much like the journalling I wrote about in the post about mindfulness the other day. 

But, this is my reality. This is the year that we've had. And it is still it's the little things I need to focus on. The things I CAN do something about. They may not make a huge difference as far as the big picture is concerned, but they are things I can do. Being able to do something constructive at this stage is huge. So I'm grabbing every bit of that that I can, and hoping that there can be enough of them in each day to keep me going, and keep me being able to be supportive of Dragon Dad as he strives to keep going too.


  1. I hope things improve for you all soon.Take care.

  2. Wow Karen, that's a year from hell. So sorry to hear of all the stressors bunching up together & taking both of you by storm. I really admire your honesty and please don't apologize for a not very positive post !! You have survived ! I do hope & pray things improve for both of you & congratulations on your son's engagement! Xxx

    1. Thanks so much, Sally!! I didn't quite plan for this post to come out quite as it did...but this is how it's been... Warts and all!
      I'm dying to see my's been way too long. Their brief spell of frequent Melbourne trips seems to have slowed down, unfortunately.

  3. I cannot imagine the hardship you and your family have lived this past year. Many prayers.

    1. Thanks so much, Rick - I really appreciate that! I know we'll get through it, but it's the 'getting' part that I'm a bit over...

  4. Hi Kaz, Apologies for only getting around to reading your blog now - 2018 has been a difficult year for many people I know (including myself). I don't think this post is overwhelmingly negative - it's real and honest. These are the realities when chronic illness pevents us from having a safety net or Plan B. I feel the same frustrations of not being able to secure a paid job when we are at the whims of our illnesses; of not being able to have a lot of savings to get out of sticky situations because of that inability to work; not having the physical resources to start again; and I too know all too well the financial dilemma of food vs medication in the budget.

    We are now in a new year. I hope that 2019 has brought some light. xx

    1. Hi Jodie - lovely to hear from you!
      I hope your 2019 will be better for you than 2018. You're certainly right about it having been a difficult year for many...I hear so many stories around me all the time.
      DD DID get a job, but it's not a job I'd have taken, to be honest. It's in sales, commission only, medical equipment. But selling to the general public, and the units are expensive. There's no retainer or safety net...the sales people operate as sole traders. So, there's the outlay of petrol, accommodation when he's away, food ditto - and no income UNLESS he sells, and the clients don't cancel within the ten day cooling off period. And so far, his strike rate has been almost one sale a day, but half of them then cancel. So, it's dire. I had a good run selling art work from the middle of October through to the New Year - must write a blog post about all of that - but then it quietened down again. Just have some new commissions in, but I need to do some major work to set things up that could potentially create multiple income streams from the same pieces...and that takes SO much energy - mental and physical, and I've not had much of either.
      I KNOW it will pass. Because everything passes. But geez, I wish he'd found a job with a regular salary.