Living with high impact chronic pain, rare disease and rheumatoid arthritis – endocrinologist, immunologist and GP this week.

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This week has been busy.  I’ve been overwhelmed of late, because life is hard.  The truth is life is always hard though, it never seems to get easier.  Most of the time I roll with it, and when things get me down, I bounce.  But the last few weeks I’ve also been on a big dose of prednisone, which makes me feel fantastic…but also has some very negative impacts on my mental health.  I get more anxious, I get more depressed, and I swing wildly between the two.  My emotions are hard to control, I cry more and I feel sorry for myself a lot more.

Prednisone doesn’t create these moods, its like an amplifier, turning everything up to 11.

But let me be clear. It is absolutely OK for me to feel sorry for myself sometimes.  My life is hard, I live with high levels of daily pain and most people treat me appallingly.   I’ll be writing more about those people later, it’ll curl your hair.

But back to this week.  It has been busy, I wanted to daily separate blogs, but who has time for that? 

I need to remember the key points of what happened at this week’s appointments, so this is more for me than anything else, but I also continue to want to advocate for and raise awareness on how difficult life with invisible illness, rare illness and high impact chronic pain truly is.  Most people who were close to me clearly thought that life on the couch is a bit of a lark, and many have openly expressed jealousy at my fabulous life.

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This is deeply offensive for so many reasons.  Therefore, I am going to continue to blog and post to socials about my life in relation to coping with illness.  And, in truth, the fact that I become overwhelmed and break down sometimes is just another honest aspect of how hard living this life actually is.

It is not a lark. It is not endless days of eating caramel corn and watching Netflix.  I rarely watch Netflix, I don’t have time. 

Ultimately, I’d like to breed understanding and compassion, but our society seems to be breeding self-absorbed keyboard warriors all competing in the pain Olympics.  Winner being the person who’s the “worst off”.

I have never wanted to be the worst off.  I do not do this to curry sympathy, although during the really tough times, the support and yes, sympathy, I get from a few long-term followers means the world to me.  Sometimes the support from a few people I don’t’ even know well, and only know online is the ONLY support I get. 

I will not apologise for wanting or needing that support sometimes.  I am unendingly grateful for that support and understanding.

Again, I digress. Back to the point.

Monday March 22, 2021

Etsy business – Awareables

Things have been tough.  My business has been in trouble, I’ve been screwed around by suppliers and partners, the postal service is unreliable, Etsy customers of late have been insanely entitled and rude, and all of this means I haven’t been making any money, and I may not make any money for another month.  Etsy is a fantastic platform because it gives you an audience of people who appreciate hand made, quality items, but as a shop owner you sacrifice a lot of control for this market.  When there is a dispute, Etsy decides, and they work very hard at siding with the customer.  I have won all cases against me, but its still a very stressful process, and etsy have threatened to shut me down several times, because some entitled Karen is having a bad day and thinks its OK to blame her problems on a stranger on the internet.  I had so many nasty messages and nasty customers I came close to shutting down.  But over the weekend I got a large number of orders, for which I am extremely grateful. I spent all of Monday making those orders, and Tuesday afternoon packing and shipping them.

My kids

My kids have been very high maintenance lately as well.  Helping someone who is suicidally depressed is not easy…its frankly exhausting.  Obviously they are my highest priority but there is never anyone to take care of me, no one whom I can debrief with, no one who understands what that’s like.  No one who will support me while I support my young adult children.  Their father is a good time Dad who has never parented. He left their lives when they were young and only breezed back in when they were in their late-teens and not so difficult anymore.   In return, they worship him.  People keep telling me that one day they’ll realise WHO raised them and who did all the hard work. They’re not there yet. They bend over backwards to please their Dad, and they treat me like the maid.  It’s difficult.  It gets me down.  But this week both have been high anxiety, high depression, so I’m just keeping their boats afloat and reminding them of the tools and strategies they need to be using to combat their mental health issues. 

Money and lack of it

I’ve had major expenses lately, and am deeply in the red.  My kids’ medical needs are also expensive, psychologists don’t come cheap and while the cost is subsidised, its still significant.  Because my business has been foundering, I am under extreme financial stress.

And then my cooktop died.  With a bit sparky flash and a foop it arced up and died.   Replacing it is $2000 minimum.  Most likely rather a lot more.  The oven is old as well, it will need replacing too.  We’re talking upwards of $4000 to get both done. 

Impossible. 

So we have the microwave and the benchtop oven to cook with. 

It was a bit of a “last straw” moment though.  I snapped.  Drank too much wine and went to bed to cry and feel sorry for myself. 

Tuesday March 23, 2021

Hello hangover.  NO more wine.

Today was one of those unfortunate days where I had not one, not two but three doctor’s appointments.  My endocrinologist and my immunologist both booked me on the same day. They are both extremely hard to get appointments with, and postponing would have meant at least a three month wait, which wasn’t a good idea. I needed to see them both and soon.

Added to that I lost track of which “week” it was, and I was due for my opioid pain medication scripts.  My GP only works part time, so I could only get an appointment with her today. 

Shit day ahead. 

Endocrinologist

My endocrinologist was first, and he is a prince. I was there to review my saxenda, the latest weight loss medication.  I have been taking it for over four months and it worked well for the first four weeks.  I lost around 8kg in those first four weeks, which was fantastic.  And then the weight loss stopped. The next three months I lost NOTHING.  Not a gram.  I even gained back 2kgs.  I cut back my food to nothing for three weeks, nothing but 2 coffees in the morning and the juice I take my meds with.  I still didn’t lose weight. 

Depression hit hard. I can’t stand being obese, and I do not “deserve” to be obese given my very low calorie intake and my exercise levels. I exercise more than most “healthy” (non-chronically ill) people do.  I am not deconditioned, I am average-to-high fitness.

I should NOT be obese.  It causes me great distress due to an upbringing that pushed a “fat is the worst thing you can be” narrative.

I have been reading about semaglutide, which is a similar medication to saxenda, and is also a glucagon like peptide 1 (GLP-1).  A recent medical trial has found it to be even more effective than saxenda, and because the saxenda is no longer working for me, I asked him if I could try the semaglutide.

To my surprise, he agreed. It’s off-label, its still being trialled, 99% of doctors would have told me to wait until the trials were complete.  But my endocrinologist believes me, and he understands how much my weight upsets me.  Mentally ill miserable.  Not vanity. Anorexia nervosa, body dysmorphic disorder, and severe depression.  All due to my weight.

So he wrote the script. Just like that.  As I said, a prince.

Its amazing how just ONE positive thing in a sea of horrible things can turn everything around.  I left there with my script in hand feeling reinvigorated, motivated and much more positive.  I know that it will take several months to see any results, and its possible it won’t work at all, but I am doing something active to improve the problem (not just whining about it) and there’s every reason to expect that this will be successful, if slow.

Awesome. Great start.

My GP for pain medications

Next…GP.

Sigh.

I “interviewed” this GP in advance of transferring my records to her and she promised she would continue to prescribe my opioids if she found my pain to warrant it.  My pain DOES warrant it, as shown by my pain management doctor, but she has been sucked in by the anti-opioid propaganda that has taken over the world, and most recently Australia.  End result? She wants me to taper lower.

I am at about the lowest dose I can deal with.  I had to stop my rheumatoid arthritis medications six weeks ago, and I have been in severe pain for many weeks.  Yet this doesn’t matter to her, she still wants me to taper. I went to my pain management doctor and he suggested that instead of 20mg twice daily we try 15mg three times daily.  This because I told him that targin does not last the full twelve hours for me, only around eight hours.  I expressed my doubts that 15mg would be enough to get on top of my pain in the mornings, but I agreed to try. 

My pain doc was supposed to write to her, but the letter wasn’t there yet.  I’m betting he wrote to my old GP, I have to follow that up.  So I explained what my pain doc had said, and his plan, emphasizing that he’d said he would write in the letter that my GP was allowed to take some licence with the dosing, and increase and decrease until we find the lowest effective dose.   She believed me and agreed to new regimen, but she twice said “we still need to taper you lower”.

I mean, honestly.  Why THE FUCK do we need to taper lower?  Because some bureaucratic dickheads say so?  It’s extremely frustrating and I don’t know if I can stay with this GP. But change too often and my medical records will flag me as a “doctor shopper”. 

I am going to present her with the real evidence on opioids, the real rate of addiction, and the truth that opioid induced hyperalgesia is most likely a myth.  I have scientific studies to back all of this up, somewhere. 

But…its exhausting.  Gathering all this data, writing it up, creating a neat little “info” package for GPs who have been taken in by the opioid hysteria propaganda.  I shouldn’t have to fight this damn hard for pain relief, for quality of life. Doctors have completely forgotten that the reason I want opioids is because I’m in severe PAIN. They all seem to believe that isn’t possible, that my pain is mild and opiods are not necessary.

Opioids are the only thing that work for severe pain, every doctor knows this. What they no longer “know” is that chronic pain can be severe and happen every day. I wake up in horrible pain, every day.  Every day it feels like I had ortho surgery yesterday on my spine, knees, hands, ankles, hips and shoulders.  Life is miserable until my morning dose of pain medications start to work.

Now doctors seem to think “chronic” means “mild” and severe pain that happens every day is not possible. 

It is possible. It is happening. And its one of the worst things that CAN happen, truth be told. I’m NOT feeling sorry for myself, its just fact.  Pain. Constant pain. Severe pain, every day for at least part of the day.  If they take my opioids away my life won’t be worth living. Fact.  Not drama-queening. Not exaggerating.  And why should I suffer? Because some people get addicted?  (Not even that many, frankly.  The stats are regularly massaged by the media into a sensational headline that doesn’t resemble the truth).

I need to gather this information and do the work. I wish there was someone else doing the work, to be frank. But there isn’t. No one cares about people living with daily, severe pain.

Pain patient advocacy

I had decided to give up on my pain patient advocacy because of all the nasty trolling I got. 

It really hit me hard because the trolls are a group of “chronically ill” people with too much time on their hands and being bitches just because they can.  Their “fun” is more important than actually making change and pushing this issue, and they criticise and troll me regularly. 

Total fucktards.  I

 hope they wake up in real pain one day and have their pain relief taken away.  I’d like to see their smart assed little faces then.   These are people who have mild/moderate, occasional pain. They think because they can manage their pain that I should go without my opioid pain medications.

I’m so damn sick of these people.  They want to feel like “warriors” and then way to do that is to troll people who live with more severe pain and put the idea out there that they are stronger, better, tougher and that those who want opioids are just piss-weak. 

I never used to hate anyone, but I am learning how.

Then there’s the pain free people who are the same.  They’ve never lived with pain but they don’t believe you can be in severe, daily pain every day of your life.  I don’t know why they don’t believe it, but they clearly don’t.  Because NO decent human being would deny pain relief.  Its pure cruelty and barbarism.  But that’s exactly what people want…me to live a miserable life of agony…because they SAY so.

So I have to do more work on pain patient advocacy. Its my life at stake.  It’s my quality of life, which is the same thing.  If it helps other people, great. But I will push back on anyone who trolls me.  If you don’t need opioids, great. Your pain is not as severe as the people who DO need opioids so  don’t you DARE get in the way of people who just want to be able to live their lives with less pain.    

I will put together an information kit, for my GP. And for anyone else in my situation who needs to “educate” their GP.  I don’t know when I’m going to do this, but it needs to be done. 

My immunologist

Moving on.  Afternoon, Immunologist.

I have been seeing this guy for years not, and nothing is improving.  He rarely says much, and I’m wondering why I’m bothering consulting him at all. With all the damn doctors I see regularly, he seems like one I can drop.  He’s not that interested, and he’s not coming up with any answers.  The point of seeing him was to try and get to the bottom of all my strange and rare signs and symptoms and try to make sense of it all.  His continued refrain has been “corticosteroids are masking the true problem and making testing inaccurate so you have to get off the corticostersoids”.

No shit.  I am aware.  I understand that, but I can’t get off the steroids.  This is the problem.  Anything less than 32mg hydrocortisone or 8mg prednisone and I develop adrenal crisis signs and symptoms.  I realise this is impossible, as the physiological dose of prednisone is around 5mg.  But my body clearly needs more corticosteroids…probably because of the disease processes kicking around.

Vicious circle. Endlesss cycle.  Frustrating as all get out for him, for me and for the multiple registrars who’ve been involved.

Long story short I was going to ask him if I really needed to keep seeing him as we’re not getting anywhere.  I need a way to get off prednisone, its useless just saying “taper off” when it is impossible for me to do so.

I knew he’d be pissed because I’m currently BACK on prednisone to deal with the megaflare caused by having to stop my JAK inhibitor, baricitinib.  I wasn’t expecting it to be a good appointment, I very nearly cancelled, in fact.

But he too was a different person this month.

The registrar took my history, and when he came in he reaffirmed that I was here to find a “unifying diagnosis”

He focussed on my extremely high bone density as an obvious very rare finding, and an anomaly that was likely important to the clinical picture.  I told him my endocrinologist (the other one) has been talking about doing bone biopsies, and bone marrow biopsies and genetic testing, but nothing ever gets ordered.  Its just talk…things we’ll look at “next time” that never actually happen.

He said its time we started figuring things out, and he will talk to her about these investigations and he will decide if we should move forward with them. And he will be in touch. 

Wow.  Ok. Good. 

He was interested and engaged.  My bone density is a 1 in 3,500,000 people finding.  It is THAT rare.  It is absolutely a disease process, something akin to osteopetrosis, but so rare that it doesn’t have a name, a classification.  Its just a “rare bone disease”.

The thing is that extremely high bone density can be a sign of some serious illnesses, myelofibrosis being the worst one.  Blood cancer. Terminal diagnosis.  I don’t have it, but its something that I may be developing. Which sux!  I have known this for a year or so, and I don’t post about it because I don’t post about diagnosis that haven’t been made yet.

But its very stressful having a diagnosis like that hanging over your head. Especially when everyone close to you thinks you’re just a bit of a hypochondriac, a bit special, attention seeking and what not.

I also have some signs of multiple myeloma…another blood cancer.  It’s scary stuff.  It is fair and reasonable for me to worry about it sometimes. But if I confide in someone looking for support they tend to scoff at me and tell me to be “more posisitve”. 

Thanks for that, I came to you for help and support, I needed you to listen and reassure me.  What I get is “you’re so negative” and a one liner about not worrying about things until they happen.  And then they talk about themselves and all the things they’re worried about that might happen. None of them being terminal cancer, by the way.

I am done with those people.  I am not a hypochondriac, if anything I downplay things.  I deserve support and empathy, not sarcasm, in those moments where I get afraid.  It’s perfectly reasonable for me to be afraid sometimes.

99% of the time I put all of this stuff out of my mind. But when things get stressful and people are mean and money is beyond tight and then my kid starts talking all suicidal again and then you throw a whole lot of prednisone on the mix, it is totally fair that I was struggling. Hard. 

But my endocrinologist made everything better.

And then my immunologist hit the RESET button and is re-enthused.  Truth be told my female endocriniologist is a moody bitch (acknowledged by two other physicians who work with her) but hopefully my immunologist talking to her might get her back on board too. 

After my spinal fusion I decided to forget about my extremely high bone density, because my neurosurgeon confirmed that my bones are extremely hard – he said he was afraid he was going to break his instruments when trying to screw in the spinal screws and hardware. He’d never seen THAT before and I took it as good news, because my bones are hard, not brittle.  I decided that this was just a very rare, but benign condition. Causes me no problems except I sink like a stone in a swimming pool. 

I said that to my immunologist and he said he didn’t believe that we could be blasé. That there is a “lot going on” with me and we need to watch closely for more sinister signs.  I had a liver ultrasound recently and he was happy to see that my spleen is not enlarged, he told me this would be one of his concerns.  He also told me to watch for night sweats and weight loss.  I know he’s thinking myelofibrosis because I can read google scholar and I’m familiar with the basics of the disease.  I told him that I am working very hard to lose weight, but weight loss can’t be used as a sign for me, because weight loss is almost impossible for me, even on very low-calorie diets. I’m sure there’s an endocrine reason for that, and hence my other endocrinologist trying to help. 

He ran through my other allergic symptoms, I haven’t been bothered with much angioedema, but lots of hives.  I showed him some photos of my joint swelling when I’d been off my meds for six weeks, finally proving to him that my joint inflammation is real (not just joint pain), despite never having elevated CRP or ESRs.

And that was that. He told me he would confer with my endocrinologist and organise some investigations, and a follow up appointment. 

Hmmm.  Two out of three GOOD medical appointments.  Wow. 

The hunt for a unifying diagnosis is on again. This is good.

To be clear, I’m not a Diagnosis Tart. I don’t want this so I can post all over social media what a rare butterfly I am, and how very special it all is.  Nope. 

I want a prognosis.  I want to have some idea what I’m in for.  The last ten years, and especially the last four years have been ever increasing illness and disability.  I claw back some function with the help of interventions like having three levels of my lumbar spine fused, and working hard at rehab and fitness exercises.  But the bad news does keep coming. I do keep getting sicker.  Less functional.  Less able.  More disabled. 

It sux.

I am a very long way from the days when I “just” had severe rheumatoid arthritis.  RA is still a big feature of my disease and disability but there is so much more that I deal with daily.

Most of my doctors have expressed doubt that I have “typical” rheumatoid arthritis. Most have told me I do not present like a “typical” rheumatoid arthritis patient.  Having now met many, many people with rheumatoid arthritis I tend to agree. 

We all want to find ssomeone who understands what we’re going though but I have given up on finding someone else with similar disease.  It seems impossible. 

What’s NOT impossible to find other people with rare diseases and complicated health who understand how much harder it is to get proper treatment when you’re rare.  You’d expect that doctors would find me fascinating, but most just find me difficult.  Troublesome.  A lot of tests and paperwork. Analysis. Research even.  Thinking and stuff.  Not the usual quick treat and street…and charge the big bucks. 

And to be honest, some rare people use “rare” as some sort of badge of honour.  Similar to the “my pain is worse than your pain” crowd, there’s the “I’m the RAREST OF ALL!” crowd.

Special snowflakes, everywhere. 

Again, I don’t want to be the rarest of all. Rare disease means delayed diagnosis and/or misdiagnosis.  It means delays in treatment.  It means misdiagnosis and the wrong treatments.  It means poorer health outcomes.  It means disease and disability unchecked.  Give me mainstream rheumatoid arthritis ANY day. 

Which is NOT to say that rheumatoid arthritis doesn’t suck…it really does.  But there are worse things and I live with a few of them.  And normal people shouldn’t get offended by acknowledging that they are not the worst off, they are not the rarest and maybe their pain isn’t the worst of the worst.  I know a few people who are far sicker than me and in more pain.  That fact doesn’t diminish my pain, or what I’m going through.   I don’t need to try and minimise their experience to promote my own.

I get very offended by people who try to minimise my disease and/or my pain.  I guess maybe some of these people feel like I’m minimising them with the above statements.  I’m not. Or its not my intention.  Its just far better to be one of the crowd, somewhere in the middle, than way out there on your own…alone.  Too unique to be understood or treated effectively. 

When the registrar was taking my history, she was clearly surprised as the medication list got longer and longer, and she asked about all my diagnoses, immunological or otherwise.  It’s the registrars job to take the history, pull out the pertinent information and summarise to the professor.  Patients tend to ramble on, and the professor doesn’t’ need to sit there listening to that extraneous information, its much more efficient to have the registrar pull out the relevant information. With me, that’s not so easy to do and the history crosses into endocrinology, neurology, hepatology, hematology and rheumatology. And that’s just the last three months.  My doctors are excellent doctors (for the most part) but there is nothing about me that is clear cut, most of my test results are unclear, contradictory or anomalous.  They are anything but normal.  My friends and family have used my lack of a unifying diagnosis as proof that I’m a hypochondriac…not really sick. Attention seeking.

And that really pisses me off.   Because they are simplistic and ignorant, not to mention nasty snot-holes who thrive on snark and bitchiness.

But I digress again. 

By the time I got home on Tuesday I was beyond done for.  A kid heated up some food, and I crashed by 7pm. 

Wednesday 24 march, 2021

More orders!  I spent all day making and shipping bracelets.  Also had to take a kid to an appointment and pick up the Rinvoq samples that my rheumatologist organised for me. 

Rinvoq is the newest JAK1 inhibitor on the market, and I’m waiting for my script to be approved by medicare.  My rheumatologist was great and arranged the samples because when I saw him I was in truly bad shape, and my joints were clearly red and swollen (but not hot).  It has taken a few years but he finally believes that I have true inflammatory arthritis.  He has never seen me in full flare and because my blood work is always normal, he has oft expressed doubts. 

He doubts no more.  He was markedly more sympathetic at my last appointment and agreed to prescribing a prednisone bridge until I could get onto the next Jak inhibitor.  His arranging for me to get samples so I could start quicker was just pure kindness.

The only problem is that I’ve just been through all that liver testing with the hepatologist, the head of the local teaching hospital, the “go to” liver guy, whose opinion was that I should NOT take any more JAK inhibitors. 

But…there’s no other choice. Its that or long-term prednisone. SO while I have some concerns, hello Rinvoq. 

That’s the other thing about rare and complicated diseases…sometimes there are no good choices.  Often there are no good choices. You just have to take the best of a bad lot. 

Thursday, 25th March 2021

More bracelets and some groceries and such. The Chicklet helped.  I also had to do something about the fooped electric cooktop.  I tried turning it on again, and it sparked again. Ok, dangerous. Shut down at the fusebox.

I need a new cooktop. Probably an induction cooktop, but I’m not sure. I have to do research. But I can’t afford it anyway.  So I bought a portable induction cooktop for $107 so that I can cook again.  Whack it on the credit card. Thank the GODs for credit cards.  I am in deep shit, probably about waist height and rising, but I need a cooktop of some variety. Its only one hotplate, but its something to heat food on.  Its also a good test of whether I want an induction range, or another electric range.

I HATE my current electric range, it does NOT get hot enough to sear a steak. I have hated it since we moved here.  I used to be a good cook and love cooking and being able to sear a steak is critical to cooking properly…but you can’t do that on my current (broken) electric range.

The upside is that Gamerboy and I did our internet research and he discovered a way to make the best steak ever. He is a now genius in the kitchen with steak.  But if I’m buying a new cooking range, then I want one that’s going to make cooking a steak easy.  Steak is expensive and when we can afford it again, I don’t want to ruin it by cooking it badly.   SO I bought a portable induction hotplate.

I had a panic attack when I got home with my brand new portable hotplate because I’m almost at my credit limit.  Shit is now around neck height.  Hmmm. I underestimated.  Damn.

My ex-husband and the kids’ father

Then I got a text from my ex-husband.  His financial situation has changed (he has a new partner) and he is no longer able to contribute financially to the kids’ living expenses.  To his credit he has paid two hundred a fortnight to help me with the (considerable) expenses the kids are running up medically and just by being alive.  They are a long way from financially independent and to be honest, Gamerboy may never be fully independent due to his disability.  So the extra money, though not a huge amount, very much helped.  I appreciated it.

But now, when I am in said neck deep shit, now his situation has changed and he can no longer contribute.

My kids are over 18 and legally he has paid for a year longer than he needed to.  I appreciate that he did that.  And I could snark at him and tell him he sux…but what’s the point?  I could take him to court, because we have a child with a disability and I would win.  But it would cost me a lot, emotionally. IT would cost the kids a lot emptionally.  I have worked so damn hard to keep this a friendly divorce, even though he’s kindof a shit father and he definitely was a shit husband.  Now he is focused on his new relationship as he should be and I have no desire to put pressure on him, or his new partner, or cause unnecessary drama. There is far too much of that shit in the world already.  And what would it change?  It would just destroy the goodwill that I’ve worked so damn hard all these years to keep in place.  And the kids would be upset.

So I sent him a very blunt and honest text message telling him how I feel –  I appreciate his help thus far, that I totally understand and I have nothing but good wishes for him and his new partner.  Genuine and true. 

Cos that’s who I am, whether people like to believe it or not.

Timing was terrible though.  I did go up to my room and cry, just from sheer stress.  It’s all about the timing.  I have arranged payment plans with all my utilities. I have a payment plan with my plastic surgeon.  My credit card is almost at max.  The stovetop needs replacing, and that is going to be thousands to replace and install. The rego is due on the Chicklet’s car.  And my ex-husband chooses now to change our arrangement.  It is not his fault, but it was all a little too much right now.

The Chicklet’s birthday

It’s the Chicklet’s birthday in two weeks. I have no money. Her last three birthdays have been ruined. Her 16th was ruined by her best friend not showing up. Her 17th was ruined by a (different) best friend leaving early and creating drama.  She didn’t have an 18th – an 18th birthday party, huge deal – because of COVID-19.

I promised her this birthday I would do all I could to make it the best day ever.

But I have no money. 

She wants to go to Sydney to some specialty shops that we don’t have here. She has saved a bunch of cash and I need to come up with hotel money, petrol money and some spending money.  And, ofcourse, her birthday present.  I have no idea how I’m going to manage that, but I AM going to manage that.  I promised.  I will find a way.  I always do.  Because yes, I break down and have a big cry, and then I get up and put my big girl panties on and make some bracelets.  I’ll find some money somewhere. 

And I have to stay on the prednisone so that I can manage the three-hour drive, and hours of walking around the city. I will be taking my wheelchair and power assist.  I will need it.

I need to redouble my business efforts and make some money. Oh and I have to do the pain patient advocacy stuff, because my GP is not supporting my pain medication use. 

Shit.  Its too much.  A healthy person couldn’t do all of that.

While out grocery shopping, I started feeling a flare incoming.  An hour later I could barely walk and was in agony.  We went home.

Dog trouble

I’d bought the dogs some cheap chew toys and the Chicklet gave them to the pups. And Bodie started resource guarding and fought with Bella.  Not play fighting, serious dog fight. Bodie came from an abusive background and has a vicious streak.  When he’s triggered he WILL bite.  He always needs to be watched carefully but sometimes he doesn’t warn, he just attacks. 

He had been doing really well lately, I have put a LOT of work into this dog.  But this last week I haven’t been able to get him out and get him the exercise he needs.  He’s a husky, he needs exercise else he goes batshit crazy.  Bella is a german shepherd.  She can lie around on the couch all day and is perfectly happy with that.  I drag her out because even though she doesn’t’ much like it, she does need the exercise.

I haven’t spent as much time training with them either, because I’ve been rather poorly lately.  So  Bodie has got all this pent up energy and no place to put it, and his bad habits re-emerge.

I was just telling the Chicklet to back away and give him space when she bent down to pick up a different toy and he lunged at her and bit her face.  She’s very lucky that he got her a glancing blow, because he could have done serious damage to her face.  It was an attack.  It doesn’t matter that he didn’t grab hold for long, he did grab hold.  He was angry and aggressive. 

Any dog that is aggressive over their resources is dangerous.  Bodie has been that way since we first got him, its why I didn’t want to keep him. It’s a trait that he has, and it will always be there.

But I DID keep him and he is now my dog and this is my problem to work on and get under control.  I love the pooch.

I grabbed him and man-handled him into his crate. He bit me as I did so, and he was biting with intent.  He was shut in, blanket over the crate and left alone.  The worst punishment for a social dog is to be abandoned and isolated.  He knew he was in deep shit.

Two hours later, after much apologetic posturing on his behalf he was let out.  He’s no longer allowed toys. He’s not allowed treats, because he can’t be trusted with them.  He is not allowed on the couch.  His status has been reduced to bottom of the pack. He is last to get his dinner. He waits.

I have a muzzle for him and if he starts to play bite too hard, he gets muzzled.

Incredibly stressful day because the Chicklet wanted him gone. She was scared and upset, she didn’t mean it, but she needed much support and calming down.

New pain medication regime not working well

Pain kept ramping up.  I hit the couch and because I’m on a lower dose of targin, it was completely ineffective.  I could do nothing but lie on the couch (and cry when no one was around).  The kids are old enough to physically take care of themselves, so life is much easier than when they were little. I still felt bad though because Gamerboy’s girlfriend was staying over and I’d promised her favourite dinner. She’s a lovely girl and they make a very good couple.  I hated to let her down. 

But there was nothing I could do.  I eventually took an extra dose of targin and oxynorm and by 9pm the pain was starting to wane, pain medications finally taking hold.  This is the worst rheumatoid arthritis flare I’ve had in a few years, the pain was outrageous.  I made it up to bed and lay flat, running through my favourite meditation youtubes and breathing through it.  Eventually I fell asleep. 

Friday 26 Mar 2021

Today. I just wanted to blog.  But first, bracelets!  A few more orders, this has been an excellent week. I need that. I’m very grateful. I don’t know if some people from my blog community have ordered, but I am grateful. 

I had to go out this morning and get some bloodwork done, the Chicklet also needed bloodwork done, so that was the morning. And this afternoon I got to the blogging.  A few pages of writing. Cathartic.   A catch up. I need to blog more. I need to “talk” and this is the best place for me to do it.  It doesn’t matter if no one reads, but I really do want people to read.   I want people to understand.

Sympathy? Yeah, I want a little of that too.  I fail to see what’s wrong with wanting a little sympathy sometimes. Life is hard and a kind word of support goes a very long way. Especially when you’re very isolated and have no one close by to lean on. 

And still, more importantly, I want people to realise what life with chronic, rare, invisible illness is really like.  I want everyone to stop thinking people with invisible illness are faking. Or exaggerating.  Or are weak. Have a low pain tolerance. Just need to harden up a little.  For the vast majority of us, none of that is true.  For the vast majority, life is challenging. And for some of us life is down-right hard, sometimes feels impossible and the overriding feeling is life is just work. Constant, hard work.  Not enough joy, and not because I’m “negative”…because I have all these problems, and they’re big ones, and there’s just me to fix them.   And my whole life becomes putting out fires and there is no time for things that bring me joy.

So this afternoon when this post was almost finished a friend messaged in a flap.  High anxiety. 

She only ever calls when she’s anxious about something and needs to be talked down. 

The problem?  She has a new job and she doesn’t know where to park on Monday.  It’s a huge anxiety for her, and I get that, but honestly, its an easy fix.  I listened and encouraged her to talk (for over 40 minutes) and when she asked for advice,  I told her she needed to call her new boss and ask them for help with parking. Explain that she has this anxiety about it, and she just needs to know where best to park.

Not easy, but simple. 

And to be very clear, I don’t give advice unless someone asks for it.  And I give it once, if you don’t want to take my advice, I don’t harp on about it.  I used to have the philosophy that everyone’s problems are huge to that person…that her parking anxiety to her, is just as important as my suicidal child is to me.  I have never power levelled or shut someone up with a “my problem is worser than yours”.  I always listened and gave support.

But over time, when I’ve gone through multiple crises and no one has offered me any support, or even asked if I’m OK, I’ve lost empathy.  I’ve lost patience.  I no longer want to be the source of endless support.  I don’t have time for it anymore. And to be blunt she was blowing a minor problem out of all proportion, she had a simple course of action that would help or eliminate the problem. 

Ofcourse she didn’t want to do that, the simple, obvious solution because she didn’t’ want her new boss to think she was crazy.

Sometimes as an adult you just have to adult. You just have to own your anxiety and manage it.  Ask for a little help. The boss is going to provide the information about where and how to park, and then poof! No more anxiety. Enjoy the weekend.

But she caaaaaan’t do that. She’s too anxious to ring him.  Ok then, text or email.  Its hard, but you NEED to do this.

She talked some more and then I ended the conversation because we were going around in circles.  I told her to send the txt and then tell me how it went.

She didn’t do it.  She called to someone else about her extreme anxiety.   She just wants to talk about it.  She doesn’t want to deal with it.

See why I’m tired of other people’s problems?

I gave her 40 minutes I didn’t have to give, to offer her support and encouragement.  She asked what to do, so I told her. She refused to do it. 

She has been having hysterics about this for TWO weeks. She has been complaining and worrying and talking about it, this was the fourth conversation we’ve had about it. But she hasn’t done a damn thing to deal with the problem. 

So I’ve lost patience.  Seriously I’d trade her terrible problems for mine in an instant. I could fix hers in five minutes.  No one can fix mine.  Well, ok, someone filthy rich could fix my financial problems.  But the rest of it, not really fixable. 

I am not as empathetic as I used to be, and this post is in part to explain why.

Being anxious about where to park on your first day of work is fixable. Not even manageable, its FIXABLE.  But people always think their own problems are insurmountable and bigger than anyone else’s.  It’s a little tiring when people think that a parking space is on the same level as my illness, pain, disabled kid, suicidal kid, decimated business and deep financial debt.  Actually its about he same as my broken hotplate…a definite problem but with a solution albeit a difficult one.

I lose empathy especially when they are the kind of person who repeatedly does this…always something to be insanely anxious about.  Never seen a psychologist to learn strategies and tools to manage anxiety.  Tried medication a few times but didn’t stick with it.  Won’t do the work. Loves to build the drama and feeds off the attention.

All the things people accuse me of.  I see people doing it. I get it.

I do not do it. I’m too damn busy trying to keep my head above water to make shit up.   And heck, if I had any spare time, I’d spend it doing something fun. Art. Music.  Or I’d work on my business.  Or I’d work on pain advocacy ideas.

Not selling the drama for the sympathy vote.   When the only “friends” I have are people who want to dump their rather light weight problems on me and never so much as ask how I’m doing in return, I am better off without those friends.  I’m better off alone.

When I wound up with her Gamerboy came downstairs and asked if I wanted to watch a cool new show that he’s been looking forward to its release.  I don’t get many opportunities to spend time with him that are just pure relaxing fun.  So I jumped at it.  And didn’t finish my work.  Putting me behind for the next day.

But time with my son is more important. This blog post will get posted tomorrow. And that’s fine. 

My life is not easy. My life is very busy. I have no time.  I spend all my upright hours on necessities and I have precious little time for things I would choose, things I enjoy. 

Today I chose Gamerboy. 

Postblog:  It’s the Tuesday after the Friday morning I wrote this blog post.  I haven’t had time to post it before this, because life keeps happening.   On Saturday the dog, yes the husky stole a whole cooked chicken. Ate it bones and all. This is very dangerous for a dog. I called the vet who gave advice.  I could not take him to the emergency vet because I cannot afford a five thousand dollar vet bill, so I went with conservative management.  He is doing fine so far, but he is still being watched carefully. His nickname is the Terrorist and he lives up to it.  The chicklet had a major setback with her anxiety and we spent most of Saturday talking and working on proper strategies, practicing those.  And the Waif bought a motorbike and on  the way home it stalled. Her father tried to restart it, and it burst into flame. I shit you not…the think burst into flame. Fire brigade and all.  She is officially a member of this family now because that’s just crazy and exactly the sort of thing that happens in this house. 

You gotta laugh.  But its all true. 

Monday was bracelet orders, grateful for those. Also grateful that I’ve finished them.  Monday was decision time – shut down the business or persevere. Not an easy decision, but I decided to persevere.  It was successful, I can make it so again.  But that meant restocking supplies.  So there will be no profit this month either because I’ve used it to buy supplies.  Running a business is much harder than working a job.  Much harder.  I’d love to just get paid for every hour I work. Even at minimum wage I’d be doing better.  But who’s going to hire a disabled person when they can have an able bodied person?

I also have to chase down some bloodwork I need to get for my first endocrinologist, I lost the form.  And I need to schedule an MRI on my pituitary.   

And I need to walk the dogs.

That’s today.  After those things I am going to stop. I am going to do some art.  I need a break and I need to learn to take them and not push through my TO DO list.  The list will always be there. I will never get to the bottom of it.  Life is always going to be playing catch-up because I have invisible illness and high impact chronic pain.  I am a single mother of anxious and disabled young adults. 

Everything stops with me. Every problem, every decision is all on me.  I want people to know and understand what that means.

And I need to write. I can’t talk about most of this stuff, so I write. If you made it this far, you’re amazing. I should have broken it into separate posts…maybe I still will. Later. I just needed to vent, get it out. Therapy. Catharsis.

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1 COMMENT

  1. I’m exhausted and frustrated for you reading all that you’ve had to put up with. I really hope the docs can find out what is going on with your rare disease/s, not knowing what is wrong but that there IS something wrong must be so concerning. All those I’m in more pain than you people have lost their empathy and that is horrible. I hope things improve for you soon you deserve some good luck. Take care.

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