Rheumatoid Arthritis and my daughter’s birthday and where there’s a will there’s a way

happiness-painMy daughter’s birthday was yesterday.  The plan was to shop until we dropped. And last year, the plan was the same. And we did. And I DID drop.  It took a full day to recover.

It is traditional in our family to go out for a birthday dinner.  We don’t eat out much. Both for financial reasons, and because my son doesn’t enjoy it that much.  He has Asperger’s and eating out is not his thing.  Nevertheless, birthdays are special.  And birthdays are celebrated with something that we don’t do that often – going to a restaurant.

This year I was ‘sensible’ and I decided to stagger the shopping trip and the dinner out.  I decided we would shop on her birthday, and then have her birthday dinner the following night.  Because I expected to be one bit fat bucket of flare bear on the evening of her birthday, and not really able to go out and enjoy a meal out.

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Rheumatoid Arthritis and taking a break in the Sweet Spot

So I’m kinda in a sweet spot.  Hallelujah you say?  You betcha!

I’ve been at 20mg of prednisone this week, and at 20mg the stabbing pains, the sudden screwdrivers and the constantly aching hands feet and knees return.  But it’s manageable.  It’s moderate.  It’s doable.

The pain is constant, but I am used to it.  Most importantly the fatigue is controlled, I have energy with which to fight.

Today I dropped to 17.5mg, on my way to my steady 15mg.  There I intend to stay while I take break from doctors, procedures, surgeries and of course my other medications.

Please remember, I am off my meds on doctor’s orders!  I’m NOT recommending nor advising it.

Having said that, at this time, it feels completely right for my body to take a break from all the medications I was on (orencia, methotrexate, arava, plaquenil and naprosyn.  And of course prednisone, but prednisone must remain.)

I’m recovering well from my surgery now, despite a cold.  I have four 2-3cm incisions in my abdomen and all are clean and healing well. Itching even. Good!!! I’ve always been told itching means healing.

If it weren’t for the cold, and my sick kids, I would have gone down to the gym and done a light workout today.  But there is no need to push.  I will go tomorrow.

I expect that this week will be the sweet spot too. I have recovered enough from my gall bladder adventures to get back to my gym routine, I have enough prednisone in my system to make that feasible.  Classes like my Centergy (yoga/pilates) and R30 (30 minute spin class) where I can control the intensity easily.  And using the cardio machines and keeping this body moving are paramount.

That disgusting, gnawing, nagging, nauseating pain in my upper abdomen is gone.  I didn’t realise just how lousy that was making me feel. So, even though the post op was a bit of a train wreck, I am very glad my gall bladder is gone!  It has helped my general wellbeing levels considerably.

As is so often the case, I didn’t realise how bad it was until it was gone.  It really is quite incredible how easily we become accustomed to a level of pain or sickness, and start to adapt to it as normal.  It can be hard to differentiate between what is ‘normal’ for our disease, and therefore must be accepted and what is part of something else entirely and can be treated and even cured!  It’s nice to lose that pain and nausea.  Very nice indeed.

I still don’t have much of an appetite though.  I have dropped a kilo this week, but weight is the very bottom entry on my list of ‘Things that piss me off’.

I am just feeling ‘heathier’ on the whole, so getting rid of that gallbladder was the right thing to do.  But no more surgery for a while!  All surgery is difficult.  I know that my hips still need looking at. But that is a very big deal and I am not ready to go there.   I know that I should get more nerves in my spine ablated.  I know that I have a whole bunch of neurological tests still ahead of me.  They also want me to add a gastroenterologist and cardiologist to my list of specialists.  Well, I just can’t right now.

I can’t.

It’s not critical. I am OK.  I can’t face more doctors. I can’t be the sick girl…just for a little while.

I am going to sit in the sweet spot for as long as I can.

Emotionally, I need to recover. Physically I am doing quite well (comparatively). The pain is constant and the sharp blades come when they will.  Nights are hard.  But I am sleeping, with the help of medication.  Compared to constant, severe pain, I am doing OK.

My pain levels really only come in two flavours.  Managable and not manageable.  In practical terms, that’s what it comes down to.  They have been unmanageable for months.  Now things are better, on my scale. I am a long way from pain free, but I am up and moving and enjoying life.  I am going to ride that wave as long as I can.

I have to see my neurologist this week.   I don’t think he’ll say much.  It really is ‘wait and see’ until the next MRI. The appointment seems pointless, quite frankly.  But I have a good feeling about it.  I believe the next MRI will be clear.  I’m having very few neurological symptoms.  Today my right eye won’t focus.  I still believe that’s more Sjogren’s than neurological though.

Truth? I just don’t want to think about it.  It’s not denial. It’s just not critical that I deal with it right now.  I know it’s there. I’m not pretending it’s not.  But I can deal with it in two months when I need to have the next MRI.  Until then, it can sit on the back burner.  It doesn’t get brain time.

Right now, my son has one week of school and then he’s on holidays.  My daughter has two weeks of school, then holidays.  This weekend is Easter. That means celebrations.  That means fun. That means chocolate!!!

And THAT is what I need to focus on for a little while. Having some fun.  Living a little. Laughing a lot. Taking my kids away somewhere, as soon as they are well enough.  Recovering physically, mentally and emotionally with the people I care about the most.

Roll on sweet spot.

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Conversation between a doctor and an intern in the surgical ward and ‘first do no harm’…not nothing!

So this is the conversation that I overheard.  It’s pretty short and sweet, but it speaks volumes and explains EVERYTHING about why I was treated so badly this day, and what is wrong with doctors and ERs and hospitals.

I was finally in a bed. Finally warm, and as comfortable as one can be, in a hospital after a very long wait in the ER.  The curtains were drawn right around, and the voices were coming from the doctors station, a few metres away.

The doctors were doing a handover. The female voice was clearly the junior. I think she was the intern that was so lovely to me the next morning.

The other voice was older. A man.  He was clearly senior. He was handing over for the night. Whether he was going for a sleep and returning, or leaving for the day, I’m not sure.  But he was running through the patients, the interesting cases, what had happened on the ward that day.

It was routine and then he said:

“There was one consult that I didn’t get around to today.  And if YOU don’t get to it tomorrow, I would highly recommend that as well”

I tuned in.

I wasn’t really paying attention before that point. I couldn’t sleep, but I was drifting.  Happy to have a bed at last.  It was around 11pm I think.

“There’s a girl with ‘chronic abdominal pain’”

Dripping sarcasm on the ‘chronic abdominal pain’.

“She’s got chronic upper right side abdominal pain.  CT is clean.  Gallbladder is fine. There’s nothing wrong with her.  She wanted me to come down and rule out appendicitis.”

He laughed and laughed at that point.    I assume that’s because generally appendicitis pain is lower right quadrant, not upper. But I’m only guessing what was going through his mind, or what he found so incredibly funny about a young girl in pain.

The female voice asked what he thought the problem was.

He said:

“She says she’s in chronic pain. Chronic pain!  She’s only 19!  How can she possibly have chronic pain?”

Again huge sarcasm on the ‘chronic pain’ and the ‘19’.

He continued.

“They told me she’s down there saying her consultant wanted her to come to hospital to get checked out.  Her consultant wants me to rule out appendicitis.  In her upper right quadrant.”

He laughed.  Again heavy on the sarcasm on ‘consultant’.

“How would she like me to do that?  I should have gone down and asked her.  I’m sure she knows.“  He laughed again.  “She’s got pages and pages of stuff printed out from google.  Says she’s been in pain since she was 16.  16!  No one has chronic pain at her age.”

His tone made it clear she was a complete waste of his precious time and incredible surgical skills.

I started to feel sick to the stomach.

There was a 19 year old girl in the ER or on another ward that had been waiting for a surgical consult all day.  She was in pain. She had been in pain for three years.  Three years of being ignored, and laughed at, I’ll wager.  She was still waiting. She would be waiting forever for this doctor, and many others like him, to take her seriously.

He had left her waiting purposefully. He had CHOSEN not to get around to that consult. And he was advising this intern to ‘not get around to’ her as well.  Passing on his filthy attitude to the next generation of doctors.

Ok, she could be a hypochondriac. So what if she is? She still needed to be seen!

At the least, she needed reassurance and compassion. If she’s a frequent flyer and there is truly nothing physically wrong with her, she still needs treatment.  Psychological treatment perhaps.  But that’s not an interesting case, and it’s NOT surgical, so this surgeon wasn’t interested in helping.  He was above all of that.

On the other hand, it’s far more likely that she IS in pain.  All those pages of google articles?  To me, that’s a sign of desperation, not a psychosomatic illness!  What would YOU do if you were in pain and no one believed you?  You’d google. You’d research. You’d look and act like you were obsessed and you would be desperate for answers because you just want the pain to stop!

This girl sounded familiar and very probably genuinely in pain to me.  Imagine, being that young and being in that much pain.  And being treated like that!  Being ignored.  Being ridiculed.

The conversation that I was listening to explained every story of bad treatment from doctors I’ve ever heard. It’s endemic.  It’s passed on from doctor to doctor.  I so wish I’d tried to record it on my phone. Have proof.  It’s appalling and it is in direct contraction of ‘first, do no harm’, one of the fundamental principles taught to medical students.

Ignoring someone who tells you they are in pain is doing harm.  Doing nothing can be doing harm.  Ridiculing and demeaning a person is doing harm.

I wish I could stay that I tore back the curtain and lined up that surgeon with a steely glare and told him all of that stuff that I just wrote down.  Explained to him the life of chronic pain and how disgustingly the system treated you if you had something that wasn’t quite ‘text book’.  If your bloodwork wasn’t quite typical.  If your scans didn’t show much.  I wish I’d talked to him and made him understand and that he then contritely went down to see that girl then and there.

But that’s a fairy tale.  I wasn’t at all strong. I lay there and listened. I did nothing.  I felt terrible for her, but I did nothing.

I hope the intern went and saw her.  If she’s the same intern (and I believe she was) then I am sure she went and did the consult.

But I wish I had said something.

That surgeon would not have listened to me.  That surgeon will never listen to anyone.  But I wish I’d tried.

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Rheumatoid Arthritis and Laporoscopic Cholecystectomy (gallbladder removal) and wtf just happened???

Warning, this is going to be long, even though I am going to try and keep it short.  It also contains one of my most hated things – self-diagnosis.   I have had time to go back over my lab work and CT scans and put that together with what the doctors told me at the time and create an explanation for what just happened back there.

The incredible train wreck that was me having a simple laparoscopic gallbladder removal surgery.

First most important point?  Nothing is simple when you have a severe autoimmune disease. 

Anyway, start at the beginning.

I was admitted to hospital on Friday afternoon and had my gallbladder removed.  No complications, simple surgery.  I was discharged around lunch time on Saturday feeling way better than I expected to.

I got lucky, I thought. Wow, sometimes it works the other way! I was really feeling fine. Pain was controlled. I had four incisions, each 2-3cm, they weren’t very painful.  They were clean, no infection.  Not so much as a minor discharge.

Woot!

Then around 3pm I started to get a stomach ache.  It seemed a little bit like another gall bladder attack. It came on after I had a light meal.  Then severe, sharp pain. My belly had been bloated from the surgery (they fill your abdomen with CO2 gas) but now it was severely distended and I looked about 5 months pregnant.  I felt nauseous, and feverish.  I took some oxycodone, because that’s all the hospital would give me, anyway.

Over the next five or six hours the pain increased steadily until it was excruciating.  I had a raging fever, I couldn’t take a deep breath, my whole belly was bloated and tender, and my heartrate was well over 100 bpm. I had taken about 80mg of oxycodone total and I was still in terrible pain.  I couldn’t stand straight.

I called the health phone line, who advised me to go to hospital.

I hate hospital. I hate the ER.  I NEVER go to the ER. I’ve gotten such poor treatment there in the past, that I figure my chances are always better at home. All they do is give me pain meds (maybe) and I have those anyway.  I usually have better drugs than the ones they want to give me.  So what’s the point?

By 9:30pm I could stand it no longer. I was sure I’d popped a clip or done something internally. If all that oxycodone wasn’t touching the pain, I decided I needed to go to the ER.

I called my ex-husband.  He took me down to the local (small) hospital because the big city hospital is a joke and I’ve been mistreated there before.

He stayed until I was seen and it was clear I would be staying.  Then he took our son home and left.

And then the fun really began.

The staff at my local, small hospital were great. They started me on morphine.  Plenty of it.  Took me for a chest x-ray when it had taken enough of an effect so that I could stand up.

X-rays showed gas in the abdomen.

This normally is indicative of a perforated bowel.  And that’s a pretty darn serious complication of recent surgery.   BUT in the context of having just had my gallbladder removed, it should have been considered normal.  They pump your abdominal cavity full of gas, remember?

But the doctor at the small hospital was not very experienced and he told me that I had a perforated bowel and needed emergency surgery and a transfer to the city hospital (just over the state border and only 20 minutes away).

So I was terrified.

I was transferred in an ambulance to the large city hospital, arriving there around 1am.  I had a great nurse and she kept up the morphine.  She took bloods and an ER doc evaluated me immediately and called for a surgical consult.  At that point, they explained that gas in my abdomen was what had caused concern, and they did not believe that it was a perforated bowel.

No emergency surgery.

Huge relief.  The one good thing about being told you have a perforated bowel, is that all the other diagnoses that come after that seem pretty tame.  Pretty manageable.

The bloodwork showed elevated pancreatic enzymes, elevated white count and an elevated CRP – 22.  That was novel for me, as even during my worst flares, my CRP stays firmly normal.  To have it elevated, even if not that high, was quite entertaining.

So the doc said it was pretty clearly pancreatitis. A very common complication post gallbladder surgery. He explained that the pancreas can become inflamed and irritated by the surgery. Or a stone can be lodged in the pancreas or the duct.  He ordered a CT scan to check for those possibilities.

CT scan showed mild pneumonia, and partially collapsed lungs. But this was also mild, and the reason I couldn’t take deep breaths.  The pain I had on breathing was labelled ‘pleuritic’ and one nurse mentioned pleurisy.  Doc ordered to keep the pain relief up, so that I could work on filling my lungs.

It’s about 4am by now.  Still in the ER, but it’s clear I’m going to be admitted to the surgical ward for observation.  They added IV antibiotics to the mix, because there was a lung infection and high CRP.  Cover all bases.

By 7am I was admitted to the surgical ward, and the pain was well under control.  The attack of pancreatitis was over.  I could breathe, but deep breaths still brought about very sharp pain. They wanted me to eat something to see whether the severe pain returned,  as pancreatitis often recurs after food, I was told.

By the time I was admitted, breakfast was done, so they grabbed me a few crackers and a cheese stick.  I was feeling and looking really well to them by then, so I wasn’t really an interesting case anymore.

I was just someone taking up a surgical bed that someone else needed.

It was clear they thought I should go.  And I was happy to go.  I wanted to go!  So they gave me the crackers and a cheese stick around 10am.  I lay around for another hour and at 11am a doctor wandered over and told me I may as well go home.

Which is weird, because at that point my CRP was around 87.  Four times what it was yesterday. There was quite clearly still a problem, but not a very interesting one. My pancreas had appeared normal on the CT, so they were no longer worried about pancreatitis.

They gave me all my labs and CT scans and organised all my discharge paperwork and I was more than happy to go home.  They gave my endone, and antibiotics to continue with, and told me to come back if the pain recurred.

Scary experience, but on the whole, I was feeling very grateful, because it WASN’T a perfed bowel. And while pancreatitis is excruciating, I wasn’t in any danger.  Just pain.

And pneumonia? It was mild and I’ve had that before.

So I went home.  That was the second huge important point.  I should have stuck around and had lunch.  Two crackers and a cheese stick is NOT a meal and just because you can hold those down without vomiting or doubling over in pain, does not mean your attack of pancreatitis is in fact over.

I was still well doped up on pain meds.

Later in the afternoon, around 3pm I started to feel bad again.  So I avoided food.  I wasn’t hungry anyway, even though I hadn’t eaten a real meal since before my surgery days before.

Anyway, you know what happens next, I’m sure.  By midnight I was in severe pain.  Again I took lots of oxycodone.  More at 3am.  More at 6am.  Horrible pain. The same pain.  I couldn’t get up when the kids did for school.  I NEVER stay in bed.  They were worried.  I hauled myself out of bed so as to show them I was ‘fine’.   Once they were on the bus I collapsed on the couch.

And then I started to feel a little better.  I figured the attack was over.  What’s another 12 or 13 hours of pain, really?

I decided to eat something to see what would happen.  A sandwich.

Instant return of horrible, doubled over pain. I couldn’t breathe again.  The pain was everywhere, belly blown up like a balloon, nausea, racing pulse and not able to fill my lungs.

I called my ex-husband and asked him to take me back to the ER.

I was taken straight through and given morphine. I thought it was all going to be OK. I’d left there just 24 hour previously. I thought it would be a simple thing.  They would give me morphine. They would do that ultrasound they talked about doing to see if there was a stone still lodged somewhere.  And they would keep giving me morphine!  They knew what was wrong with me, they had all the reports and diagnoses from the day before.

I was wrong.

They put me on a gurney and put me in an isolation room.  And ignored me.

After two hours I told my ex-husband to leave.  Do what he had to do, and then head to my place so that he would be home when the kids got home from school.

After he left I was taken for another chest x-ray.

Then I was moved to another room.  And ignored some more.

I was on that gurney, with no pillow, no blanket, in a freezing room for a total of seven hours. In that time four people spoke to me.  The ER doc told me they were waiting on a surgical consult to come down and assess me. Until that happened, she didn’t know what to do with me.

She said that my CT was clear so she couldn’t find a source for the pain.  But she would give no more pain meds.

I didn’t care. I brought in my own stash.  I always bring my own stash now.  Been there, done that.  I told her I wasn’t there for pain meds. I was there for reassurance that there was nothing serious wrong post op.  She said until surgical came down, she couldn’t be sure of that.

I didn’t see her again.

There was no nurse taking care of me this time.  By six in the evening I was feeling fine and was considering walking out.  I called for a nurse and asked about that.

She said ‘What if the pain comes back tonight? Then you’ll just have to go through this whole process again.  Better to wait a little longer and get up to the ward.’

Seemed logical.  Much as I wanted to go home.

Finally the surgeon showed up with his little band of followers.

He declared that as my blood work was clean and my CT was clean, I probably had an ulcer.

I couldn’t believe it. All the workups yesterday were being ignored.

I disagreed. I told him my CT had shown things yesterday and my bloods had shown elevated enzymes.  He gave me the ‘look’ and talked over the top of me. He never once talked TO me. He talked to his minions about me, but not to me directly.

He pointed out the pretty severe bruising on my abdomen to the excited young interns or residents or whatever, and said:

“She has some bad bruising. She probably has a little muscular pain, and along with a hysterical reaction to the appearance of the bruising thought there was something seriously wrong.”

I shit you not. 

He really was trying to say that I got all scared by a few little bruises and came running to the ER because of a BRUISE!

OMG.  The only reason that I didn’t rip his face off and shove it up his butt was because I was still in a little residual pain, and still doped after a few days of strong narcotics. I couldn’t believe this bullshit!

I’ve been told some pretty stupid, ridiculous, downright offensive crap by doctors. This took the cake.

I again told him it was NOT ulcer pain.  He asked how I would know?

I said because I’ve had an ulcer.  He didn’t have an answer for that, but still insisted that an ulcer was likely, being that the pain worsened after eating.

I gave up. I could have harped on about my elevated pancreatic enzymes and that pancreatitis flares after eating as well. But why bother? He was never going to listen.

He asked me if I wanted to be admitted or go home.

I said I wanted to go home but I was afraid if I did that the pain would return.

So he said he’d admit me, and feed me and give me an antacid and see if I was fine.

He was purposefully patronising and trying to make me look like an idiot in front of his students.  I was a case study in female hysteria for them.  And pain med seeking.

Clearly, in his opinion, I’d come in yesterday and got all the good drugs.  Now I wanted more today.

He had known about me since 11am that morning.  It was now 6pm.  He had purposefully ignored the consult because he didn’t want to do it.  I wasn’t worth his time.  I am a ‘chronic painer’ and not a real patient.

By seven o’clock I was transferred back to the surgical ward.

I was moved to a bed that had no blanket or pillow.  And left there.

An enrolled nurse came to see me, and I asked her for pain meds. She said they couldn’t give me any.  They weren’t written up.

I said they were written up yesterday.  I was here only 24 hours earlier and received my usual mediations just fine then.

She said that didn’t matter. That was yesterday and there would be no pain meds today.

I waited until she left and grabbed some Endone out of my stash.  Two hours later I asked again. I asked for my slow release meds.  Again, she refused. She said she needed a doctor to order it. I asked if she could get a doctor.  She said there weren’t any.

I asked for a pillow.  There weren’t any.  I asked for a blanket because I was cold and have rheumatoid arthritis.  There weren’t any spare. I would have to make do with the sheet.  I was only wearing the lovely thin gowns with the open backs and some PJ bottoms I’d brought in.  The IV (saline) had leaked and my gown was wet.  The cannula had also bled a lot  (because I moved my arm too much!), and my gown was grotty and bloody, as well as wet. There were no more gowns.  I guess they keep them with the blankets and pillows.  Maybe there’s a little room full of them, and the doctors hang out in there having pillow fights or something.

So I just waited there, shivering under my sheet, in my wet, dirty, bloody gown.  The abdominal pain was completely gone, but my joints weren’t happy. I kept dosing up on my stash of Endone and dreaming of my bed at home.

I seriously contemplated calling my ex-husband and asking him to come and jail break me.  It was appalling.  I don’t think I’ve ever been treated that badly before.

It was clear I was being a pain in their ass.  It was clear they thought I just wanted meds. (Why??? I have my own fucking meds!  Why would I put up with this crap for meds that I already have in my bag???).

Somehow everyone today seemed to think all my bloodwork and CT scans were clean, when yesterday I had clear pancreatitis, pneumonia and possible pleurisy.  From the same set of results, two sets of doctors drew two completely different conclusions and diagnoses.  I know which set makes more sense to me. I FELT it.

There is no reasonable explanation.  I think the strict hospital hierarchy is what brought me undone.

The fact is, the ER called up to Surgery at 11am.  Surgery decided I wasn’t worth looking at.  So the ER docs couldn’t do anything with me. They just had to wait.  I don’t think I can blame the ER.  They certainly could have made me more comfortable though.

And they could have advocated for me.  Made someone come down and look at me.

By the time the surgeon came down, it was the last thing he was doing for the day. And he was going to make an example out of me. I was sub-human as far as he was concerned.  And the nurses on the ward knew to treat me as such.

And then everything changed again.  Huge lesson number three – hang in for the shift change.

10pm. New nurse.  Lovely young girl.  Absolutely horrified at my blood covered gown.  I asked her to remove my IV which she did immediately.  It was only saline and I was well hydrated and no longer nil by mouth.  But before she did that she got me a pillow. And a blanket.  And she asked me if I would like some HEAT PACKS!

She checked my chart and came back with a registered nurse who dispensed some Endone.  She apologised that she couldn’t get me my usual extended release formulation.  She was genuine.

Once the IV was gone, I could take the stupid gown off and put my own T-shirt on. I pulled the curtain around and I got into bed, with my pillow, my two blankets, my three heat packs on my most painful joints, feeling the Endone starting to kick in and I just sobbed.

Her kindness broke me.  Made me realise just how awful all the other people had been treating me that day.  She treated me the way I should have been treated. No, I wasn’t a critical patient. I was never going to die.  But I was pretty damn sick.  And I was alone.  My ex-husband WOULD have stayed with me. I sent him home to take care of our kids, that was my call.  This is in no way his fault.  I should have called my sister or a friend to come and stay with me and agitate for me.

Important lesson number four – never go it alone.  No matter how sick you are, they can treat a lone patient, with no one else watching, any way they please. And they do.

I was exhausted.  I needed a good cry and then I slept.

During the night I heard a conversation. A truly terrible conversation which helped all of this make sense.  I will write about that next.  Sorry for the cliff-hanger.

In the morning, my surgeon, the one who performed the original surgery rounded on me.  With the gaggle of excited residents or interns or whatever.

He told me I should stay in for a gastroenterology consult.  I politely refused.  (Its NOT an ulcer.  Or if I have an ulcer, its an incidental finding. The pain that brought me to the ER was NOT ulcer pain!)

One of the interns told me I could do it as an outpatient. She arranged everything. She was very kind to me. I suspect she had been there for the whole case and didn’t much like the way I’d been treated either.  There’s hope that she’ll be a great doctor one day.  She was thorough and came to see me after the surgeon had left the ward and asked me about my rheumatoid. She asked if I minded talking about it, because she wanted to learn more about it.  Maybe she’ll be a wonderful rheumy one day.

I had breakfast. It was fine. I had lunch. It was fine.  My ex- husband came and picked me up and took me home.

Never.  Again.

Never again will I go to the ER. I know I said that last time, but now it’s for sure.

That hospital may have some of the best doctors in the world working there. But it also has actual sadists in charge.  The way I was treated was cruel.  Sub human.

And incredibly inconsistent.  When I was released, I still had a CRP of 57.  Two days earlier they insisted that 22 was too high for me to leave.  But 57 is OK.

There is nobody watching the watchers in the hospital system. There are NO checks and balances in place. No redundancy.  It is a dictatorship, with the highest ranking doctor making unilateral decisions that no one else has the authority or balls to challenge.

Patient care is not the highest concern.

And where am I now?

Home.  Thursday.  Almost one week post op. I still have some bloating, but that’s normal.  I still have some abdominal pain, but it’s normal.  My incisions are healing nicely, though they are tender.  The bruising is still there, but at no time have I panicked and decided I needed to run to the ER cos my bruises are scary!

I’m on a normal recovery path now, I think.  I’m resting.  I hope that I will keep improving with no further problems.

I’m confident in the diagnoses that the original docs offered up. I have copies of the labs to back them up.  But I will never understand how the doctors the following day could read the same results so differently.  And I have no idea why I was treated so horribly the second day.  I should have been a simple case, given pain relief and more antibiotics and observed.  Possibly more investigations, like that ultrasound they kept talking about, but never got around to doing.

It just shows you what one obnoxious doctor can do.

Nothing. 

But the fact is, while I was never in danger, doing NOTHING can kill people. I would put money on the fact that people have died because THAT doctor decided it wasn’t worth his time to walk the 40 meters from the surgical ward to the ER to evaluate a patient.

I want to complain. I want copies of all my records. I want names goddamnit!

But I’m not sure I have the energy.  For now I’m going to focus on rest and recovery.  And staying OUT of the ER.

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whiteboard

Rheumatoid Arthritis and being prepared and its not a toomah

whiteboardThe headache is back!

It’s not as severe, but it’s there. It’s there enough to interfere with my thinking. To make my brain feel like a big pile of sludge that I have to wade through, waist high at least, to try and understand what is happening around me.  The sludge becomes neck high if I actually have to talk to someone or understand what someone is telling me.

I keep finding pencil cases in the freezer and open cans of cat food in the bathroom.  I am doing strange things.  I forget what I’m doing half way and just wander off. I head off purposefully to the next room, only to forget what the hell I’m doing there by the time I arrive.  I’m happy enough I suppose, but I’m a little…confused!

More than little confused.

I used to be able to keep many balls in the air.  I was known for it. Back in my programmer days I was put in charge of all the ‘small’ applications.  About ten of them.  Complicated algorhythms that needed updating and maintaining.  My talent was being able to keep all of that stuff in my head, and know several applications inside and out and REMEMBER the code so well that I could here the problem and know just where to go to fix it.

Back in the day. Back when I was healthy and earned the big bucks.

Now I can’t remember if I fed the dog this morning.  She seems OK…

Anyway, I had to ring my insurance company to find out if I had an excess (co-pay) for the hospital, and how much for my gall bladder removal on Wednesday.  First I needed to ring the surgeon’s rooms for the item numbers. It’s all about the item numbers.

The receptionist spoke so fast. They are five digit numbers. I politely said “I beg your pardon, I didn’t understand that.’

She barked the number at me again.

I asked if I could just repeat that back to her to make sure I had it right.

I had it wrong.  She sighed.

I asked her if it was only the one number.  She sighed even louder and snapped at me that there were TWO item numbers.

I said “I am so sorry but I am not feeling very well. I am sick. I am having surgery in two days. I cannot understand what you are saying could you PLEASE speak slower.”

She started speaking in an exaggerated, sloooooow voice.  As if I were an idiot.

I hate her.  She is truly a horrible person. She was demeaning and nasty.  I didn’t ask for much, except a little understanding.  And some courtesy.  Is it so bad to ask someone to please speak a little slower and clearer?

She was rude. She IS rude.  She should not be doing the work she’s doing. I don’t care what else is happening to her today. It does not excuse her treating me the way she did.

I am dealing with a very disturbing new symptoms.  I could hear the numbers.  But I couldn’t recreate them. I couldn’t write them down.

I could only keep two numbers in my head at a time…three, zero..blurble, farrble,murphle…ine.

So I wrote down three. And zero. And repeated them again. And asked her for the third digit. JUST the third digit.  And so one. And eventually I got both 5 digit item numbers down.  Correctly.  Sarcasm and all (hers).

This is not brain fog.  This is not the cognitive dissonance that goes along with severe pain.  This is something else.

I cannot make my brain focus.

I thought not being able to make my eyes focus sucked.  Losing your brain is worse.

People are talking so fast. I am asking everyone to please speak slower. I can see them looking at me, wondering if I am drunk.

My pain levels are lower than usual. It feels like the prednisone is finally kicking in. The rest of my body is on high speed.  Heart racing, extra energy, lower pain.  The usual prednisone drill.

I am taking less pain medications also.  So that doesn’t explain why my brain has set itself to go-slow.

I don’t know what is going on.  I’m so glad I had a recent brain scan.

I know it’s nod a toomah!

I saw my doctor for scripts this morning. I asked him to speak slowly.  He is concerned about my pain med use.  I thought I was only taking one a day, but the fact that I have run out means I have been taking more.  I have plenty of 10mgs, but I am out of 15mgs.  So I have been taking the higher dose. Perhaps not noticing it. Perhaps not really wanting to.  My doctor is not happy, but he says we’ll talk about  it after my surgery is over.   At other times I have taken far higher daily doses of oxycodone however.  So it’s not that serious.   My doctor is just the caring type and he keeps an eye on me.

I’m aware of the problem(s).  So I have a board. I told my doctor about my board.  He loved the idea of my board.

Big, fat whiteboard.

I list my usual pain meds (oxycontin, oxynorm, Panadol and Valium)  and I write what time I took each drug, and what dosage.

I have told my kids, should I ever get into trouble. Should I be hard to wake up, should I be confused or showing signs of stroke, TAKE A PHOTO OF THIS BOARD.

Call the ambulance first, sure.

BUT TAKE A PHOTO OF THIS BOARD!

So that whoever gets to treat me knows what I have taken.  Can see what drugs are in my system.  Come to think of it I should probably add prednisone to my board.

Best idea I’ve had in ages.  Another RA Life Hack.

Yes. It scares my kids a little. But they are old enough to learn and understand.  Much scarier for them if an emergency situation arose and they didn’t know how to handle it.  How would they live with THAT?  Say I died because they didn’t know the signs of stroke, and then the medics O.D-ed me on pain meds or didn’t know I was steroid dependent.

Don’t laugh. It happens.

A big part of being a chronic patient is knowing what the risks are, and managing them intelligently.

I hate hypochondriacs, I really do.  But this isn’t hypochondria.  This is just a good idea.

Now I’m going to take my next dose, and write it on my board, before I have my next absent brain attack.

Thank god for spellcheck.

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alcohol with medication

Rheumatoid Arthritis and narcotics and pain

alcohol with medicationI had an interesting discussion with the phlebotomist at my local pathology lab today.  I was in a lot of pain, and I really had no business being up and walking around, but I needed the ECG for my impending Gall Bladder surgery.

We started talking about opioids, and she confided that without her pain medications, norspan (Buprenorphine) , she would not be able to function.  She would be home, balled up in her bed, living a life of tears and depression.

Thanks to a slow release patch on her arm, you cannot tell she is in chronic pain. She IS in chronic pain every day, but the Norspan dulls it enough so that she can function.

I had no idea.  And she had no idea I am in the same boat, except that I cannot work.  My recent attempt to go to school has proven that unequivocally. My opioids of choice (and I use the word ‘choice’ very loosely. No one CHOOSES to be on opioid pan relief) is oxycodone. It is safe and effective for me.  However, the pain medications do not take away all the pain. They only take the edge off. They take it from all-encompassing to manageable.

Then there are full body mega flares, and nothing really works then.  The oxycodone still makes life more bearble though.  The pain is more manageable, but I am still unable to function.  I generally just stay on the couch and dread the next time I need to go to the toilet, because that ten metre walk is excruciating.

We discussed the misconceptions about narcotic pain relievers.  I can’t count the times people have told me they are terrible, addictive drugs. That you can’t take them without becoming an addict.

The statistics don’t bear that out, but why let the truth get in the way of a good story?

Still other people have said that morphine etc will just knock you out.  It’s only for palliative care.  End of life palliative care, to make those last few days or hours more gentle.  You cannot function on narcotics!

They simply do not understand how many people need opioids like morphine,  buprenorphine, oxycodone, fentanyl etc to function. And that people CAN and DO function while taking these medications.  That these medications offer quality of life benefits. They are not the playground of dirty addicts.

My phlebotomist said “I know I’ll have a shorter life.  But I’d have no life at all otherwise. I’d rather have some sort of life and have it be shorter than spend it in bed.”

I couldn’t have said it better myself.

I am an expert in how oxycodone affects MY body. Only my body. I don’t know how it will affect your body, so I don’t try to recommend or dis-recommend (er, new word there. Can’t think of the real one) oxycodone to anyone.

I know how long the immediate release takes to hit my system, and what will happen when it does. I know how long the slow release takes, and that it comes along with more nausea and dizziness for some reason.  I take varying doses of slow release. I know when I need to take 5mg and I know when I need to take 25mg.

My usual dose of immediate release oxycodone (oxynorm) is 10mg, and I usually time that to take it an hour and a half before a gym class that I want to attend. My pain relief levels will be optimum then.  I will be able to exercise, which is generally good for my body.

Oxycodone is a tool I use to improve my health.  To allow me to do other things that improve my wellbeing.  Like work, when I can.  Like exercise, when I can.  Like Socialise.  Normal things.  Normal people things.  Things normal people take for granted.

Things normal people think I shouldn’t need take narcotic drugs to be able to do.  Well, sorry, if only that were true.  Wishing a problem didn’t exist,  or deciding it shouldn’t, doesn’t magically make it go away.

So I can take my oxycodone.  Or you can take my oxycodone away and my life would literally not be worth living.  The levels of pain I experience are severe. And I am not catastrophising.

 

 

It is bad.

Most people with inflammatory arthritis are familiar with one or two joints being unbearably painful. It’s common for me to have 7 or 8 joints flaring to that degree, on a daily basis.  And it’s also common for all my joints (except thoracic spine) to be flaring.  So that my whole body is on fire.  There is aching, burning, stabbing, grinding…I’m out of adjectives. It’s hard to be articlulate when you’re in a lot of pain.  Let’s just go with ‘It hurts a lot’.

I am not focussing on the pain, making it worse. I am not catatostrophising. I am not attention seeking. I don’t even acknowledge the pain half the time. It creeps up on me, and I keep ignoring it until suddenly it has become too bad.  Until suddenly I am overwhelmed. This happened at my ECG appointment today.  My body decided it had had enough.  I felt weak and nauseous.  I needed to lie down. Like, now.  I didn’t even consciously realise it was pain.  I just…stopped.  Brain stopped.  Body stopped. I asked to sit down.  The lovely ladies made me lie down. And got me a bucket.

When I felt a bit better I headed for home. And I collapsed on my couch.  My pain killers were over due and my innate stubbornness meant I didn’t tell them at the pathology lab that I needed to get home NOW because I was breaking down.  They were calling the hospital for me, because I did these labs last week. In the end I just begged them to forget it. Take the blood. It’s easier than sorting out the administrative mess that some healthy person has created by not doing their job properly.

It feels terrible when the pain overwhelms.  At home, I took my pain meds and lay down. That was all I could do. And I waited.  Then I took another dose, because it was clear that the usual dose wasn’t  going to cut it.  Then I waited some more.  And an hour and a half later, the pain is back under control. It’s not gone. It’s never gone. But it’s back to where I can manage it.

Now I’m considering a light workout at the gym.  I feel alone, and isolated and like some dirty little secret that society and medicine doesn’t want to acknowledge.  I want to go to gym and see my friends.

People make their judgements, blissfully unaware that anyone who has spent any time with me in the last six years, spoken to me, interacted with me, socialised with me, did so while I was taking narcotic pain medications. 

And they couldn’t tell.

No one has EVER said to me ‘Hey, are you taking narcotics? Cos you’re acting funny…’

People just want to judge. Facts aren’t really that important.  They believe the scare tactics.  The believe that drugs turn people into addicts, when in fact addicts seek out drugs.

Addicts will be addicts. There will always be people prone to addiction, and they will seek out various substances to get their hits. Some addicts are addicted not to drugs, but activities like shopping, sex…whatever.  Addiction and drugs are not even necessarily related.

And addiction is serious.  It requires serious treatment. And compassion!  But the core of addiction is not drugs, it’s unhappiness.  And whatever substance or activity an addict uses to mollify their pain becomes the thing they are addicted to.

I am not prone to addiction. I am in pain.  Narcotics ease my pain.

If you have never hobbled in my shoes, then your opinion is not informed, nor is it required.

 

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electrocardiogram (ECG)

Nothing is simple when you have Rheumatoid Arthritis and you need surgery – Laparoscopic Gallbladder Removal (Cholecystectomy)

ecgOk, here we go again. I knew I shouldn’t have checked the mail.  It’s a letter (no, really??? Colour you shocked!)

The letter says I need to get an electrocardiogram (ECG) before my surgery.

What’s with everyone being all upset about my heart all of a sudden?  Sure, I’ve been complaining of chest pain for years now.  I’m quite used to everyone ignoring it, or muttering ‘costochondritis’ under their breath if anything at all. (By the way I know it’s not costochondritis. I know what costochondritis feels like. This isn’t it.)

Close followers of my facebook page will understand that my heart has been quite stomped on over the last few years, and most definitely broken by the most beautiful, kind man that ever walked the earth.  He didn’t mean it.  Actually, I don’t think he noticed.  This isn’t THAT either.

So now I need to go running around to get an ECG.  I think you all may have noticed that I am not feeling very well lately. I think you may also have noticed that I have been doing rather a lot of running around to medical appointments, scans, bloodwork…all because of this gall bladder surgery and a few areas on my MRI that lit up bright white.

Bright white on a brain MRI is not good, I’ve since found out.  Or it might not be good.  Cos if there’s one thing they definitely know for sure, it’s that they definitely don’t know exactly WHAT the bright white stuff is. But in layman’s terms, it’s areas of dead brain.  Tiny areas, but they are there. Whether that’s from mini strokes or the start of Multiple Sclerosis (MS) they just don’t know.  So we’ll just stick with ‘bright white spots are not good’ cos I’m getting off track here.

My new neurosurgeon, who saw me on such short notice (six hours! That’s quicker than the ER!!!) didn’t feel the need to talk to me much. I’m just the patient.  Why converse with me?  His role is to talk at me.  My role is to listen and obey.  He told me he was worried about strokes, and possible MS.  But he told me NOT to worry.   Because maybe it’s nothing at all.  (Strange, forced grin. Oh yeah, he’s a people person.)

Well, of course not. Why would I worry? That’s what I pay him for.

So I get that he wants blood thinners and a carotid artery ultrasound – that makes sense for strokes.  But he also wants a holter monitor. To check out my heart.

Now my gall bladder surgeon is getting all interested in my heart too.  It’s not usual practice to need an ECG before you get your gall bladder evicted.  It also just adds to the running around I have to do.  We all remember that I have severe rheumatoid arthritis, don’t we?  We all remember that getting around is kinda difficult for me, don’t we?  *sigh*

So what aren’t they telling me? What have I missed in my lab work?  Why are they all suddenly going ‘SHhhhhh…here she comes!  Don’t talk about her heart!!!’

Google tells me that when a patient is having non-cardiac, low risk surgery, surgeons only request an ECG when a patient is intermediate to high risk.  I was told Laparoscopic Cholecystectomy (rip out your gallbladder), is low risk.  So if my logic skills are still intact, and I didn’t just stroke out and am in fact now living in the Matrix, they figure I’m an intermediate to high risk.

I wonder how they figure?

I sure didn’t need an ECG before my shoulder surgery.  A much bigger, more complicated surgery!

And if I’m not low risk, well, they might have mentioned that!  I’m a big girl. I’ve got brain lesions. I can take it.

Honestly?  I’m not really concerned. I’m just cranky cos I actually promised myself I was going to do NOTHING tomorrow. I’m tired. I’ve been doing lots of medical…stuff.  When what I really need to do is rest.  And not vomit and all.

Now instead I’m going to have to go get an ECG.  Good times!

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Rheumatoid Arthritis ‘To-Do’ list for March 11, 2015

So. Today’s ‘to do’.

I am switching this to be blog, because I really need a record of what needs doing. My blog, in the past, has served as an excellent record of what things have happened, when they’ve happened, and how, and what treatments I have tried, and how they turned out.  And right now I’m in very bad shape, and I need to write EVERYTHING down.  I think it will be much more useful to have it all here, than just on facebook, because my blog is much easier to search.  And it’s mine.  Facebook can do what it will with anything I post.  This blog is within my control.

Anyway, today.  My ‘to-do’ list.

It’s gotta be short.

I woke this morning to incredible lumbar spine pain.  So everything I do today will be from home.  I think that’s doable – no outside appointments today.  Which is good. I have been running around too much lately, simply because I HAD to.  Today I can stay on the couch.

I need to call my surgeon and finalise my gall bladder surgery, next week. In exactly ONE week.

I hate surgery. Just hate it. I hate being in hospital. I hate anaesthetic.  But this gall bladder is in bad shape.  I am gaining incredible amounts of weight, and eating very little. It’s not even possible to gain this much weight. I have gained about 7 kgs in the last 5 weeks. That barely seems possible considering I have thrown up almost everything I have eaten.  So there is lots of weird stuff going on in my body.  I’m hoping a dodgy gall bladder explains at least some of that.

I HATE gaining weight. I am over the weight where I am comfortable.   I have a psychological ‘line’.

I started gaining this weight because of Cymbalta. Horrible drug! Wish I’d never given in to the pressure to take it! And all my doctors DID pressure me.  I finally caved, when I KNEW it wouldn’t help.   It has done FAR more harm than good. Infact I didn’t see ANY good. Can’t even remember the side effects, but it has certainly caused me to blow up like a balloon and gain a tonne of weight.  There’s another 5kgs I attribute to Cymbalta.

And for someone with a history of eating disorders (anorexia and bulimia) gaining a lot of weight and not being able to control that is a terrible thing for my mental health.

Obviously I can’t exercise right now either.  Or not to the degree that keeps weight off. I have an incredibly slow metabolism.  Probably the result of a decade of starving myself in my late teens.  I also have Polycystic Ovarian Syndrome (PCOS) and Hashimoto’s Thyroiditis, and these diseases make weight loss more difficult as well.  And of course the every present prednisone.

I need at least 5 HARD, intense workouts each week just to maintain my weight, and not gain. I need another 2 or 3 sessions to actually lose weight.  That kind of exercise is just impossible right now.  You simple cannot get your heart rate up that high doing low impact work alone.  There’s also the risk that there is something wrong with my heart, so doing intense workouts is off the table for that reason as well.  And if I stop eating, my metabolism just slows down even further, and the less I eat, the less I CAN eat. So I eat very little and still gain weight.

For the last few days I’ve been managing to keep down simple soups – pumpkin, potato and leek. I make these with vegetables, herbs  and stock. No cream or anything high calorie. No one should be able to put on weight on a diet like what I am eating.  But that’s my body. Screwed up in so many ways.

I can’t fit into any of my clothes and Im extremely uncomfortable.  My weight gain needs to be addressed as a psychological issue. But how?  I can only do very light exercise, and only even do THAT occasionally.  So I can’t do anything at all. I tell myself not to worry about it.

But I do.

My weight is a very good sign that all is definately not well in my body.  And it’s messing with my head.

Anyway! Onwards.

My anesthetist has sent me her estimate of her fee. $1300 out of pocket costs. I find that outrageous!  I am fully insured. I am disgusted that she would find it reasonable to charge that much.

She is the same anesthetist that I had when I had my shoulder surgery. She IS wonderful.  I DO trust her. I AM terrified of anesthetic.  But I need to ring her rooms and ask for a discount, as I live on a Disability Support Pension.  Or else I really can’t afford this surgery at all.

I have to ring the bus company to organise a new bus pass for my daughter.  They will charge me $12 and want me to come and pick it up today.  THAT won’t be happening.  It’s only a 10 minute drive, but it’s too far. I have extra pain killers on board this morning, and I am NOT safe to drive a car.  My daughter got on the bus this morning. I trust that they will let her get on the bus home as well. I have given her money just in case.  Why do they need to be so difficult? So militant?  She HAS  a bus pass – but she has changed schools, so she needs a new one. Who CARES what school she is going to???  Bureaucracy gone mad as usual.

I need to ring the company that installed my security screens.  One of them is broken.  A visiting child broke it. Wonderful.  How the F does a kid break a security screen door?  No Effing idea.  By slamming it and slamming it and pushing through it. Even after being yelled at several times to STOP it.  This child is going to have to be banned from my house. Every time this child visits, I find something broken after this child has gone home. Too damn expensive!

So the end result is my house is not secure. Both of my children suffer from anxiety. Neither is aware that the door is broken to the extent that the house anyone can just walk into the house.  The internal door has been broken from months. Ididn’t worry, because the security screen was in place.  Now its not.  Luckily I have a great big German Shepherd Dog.  She’s a big sook, and she’s scared of her own tail, but she has a huge bark, and when she’s standing there with her hackles up barking, not many people would take her on. But still, this door needs to be fixed. And fast. Before my kids find out and refuse to ever sleep again.

I have been trying to get my garden in order. Do one hour of weeding per day.  That’s not happening. So just forget that today.  I need to ring a friend who does gardening for a living.  I will book her in to get my garden in order.  Because she is my friend I know she will be flexible on payment times.  She knows I WILL pay her.  But she will offer me terms, and I very much appreciate that.

I have been trying to get my house in order. It is disgusting. I can live with messy….’lived in’. I have given up and just close the doors on my kids’ bedrooms.  But now the house is dirty. I physically can’t even do the essentials every week anymore.   So I have been going room by room, cleaning a room properly then moving on.

I have done ONE room. The Laundry. Don’t laugh, yes it’s a small room. But it WAS disgusting!

The bathroom is my next choice. It’s also disgusting. My 12 year old daughter treats it as her own private dumping ground. No matter how much I yell at her and stand over her, and yes, I have thrown her makeup away, she persists.  I do all the parenting things – no advice needed, thanks.  Some kids DO NOT listen. She is one of them. She just takes the punishment and carries on her merry way.  She has tidied the bathroom to a point. But it needs a really good bleach!  So I should try and do some of that today.

I have had one of those major drops in function that all of us with degenerative illnesses are familiar with.  We suddenly get worse. We hope it’s temporary and we’ll get better again, but part of us knows we might not claw our way back up.  This might be the new normal.

I’m not sure yet.  So much going on with so many parts of my body, I have to wait and see.  But it is time I looked at services to help disabled people with home help and domestic duties. I see so many people on facebook accessing these services.  And frankly some of them are in much better shape than me and have husbands to help out!  No one has ever told me what’s available in my area.  Time to swallow my pride and find out.

I am starting a business. More on that later. There is website work to do. It’s important I get to it. But my brain has already melted, and I just might do more harm than good if I tackle THAT today.  I need a source of income. I want more for my kids.  I won my lump sum case, and that helps a lot. I also won my superannuation case, and am getting that money paid as a fortnightly pension.

But I want more for my kids.

I have been promising them a holiday for over a year now. Every time we are going something goes very wrong with a part of my body.  That needs surgery. Which costs a whole chunk of money.  And so, not only am I too sick to take them anywhere, I had to spend the holiday money on surgery or medical procedures.

I think those are the essentials. That’s today.

Today I would NOT have gotten out of bed if it weren’t for my kids.  The back pain was that bad. So its time I looked at my MRI results for my spine and figured out what’s going on there.  I’ll do that in my ‘lunch’ break.  There MUST be a treatment.  There must be more that can be done. But as usual, I will need to hunt down the options myself, because no one is offering anything.  Only sending me invoices…

My rheumatoid arthritis is worsening – I am missing my Naprosyn.  It helps the back pain.  I am off all other medications, except pain meds. Oxycodone, extended reliease and immediate release. My doses are getting higher and higher.

And of course prednisone  –  25mg of prednisone!  I should NOT be feeling this bad on 25gm of prednisone. And being on this much prednisone makes my surgery that much more risky as well.

I don’t want the surgery. I need the surgery.  At least the constant abdominal pain will be gone. And I should be able to digest food again and not be constantly nauseous after I have healed.

My shoulder is also much more painful.  It has been 7 months since my shoulder surgery.  It’s not as painful as it was, but it is daily pain again.  Not a good enough result from the shoulder arthroplasty.    I am hoping that the gall bladder is referring pain to my shoulder and that might clear up some as well.  I keep telling myself I NEED this gall bladder gone. It could be causing many, many problems.

Oh and I need to organise a Holter monitor, to monitor my heart around the clock for 24 hours. That will mean a sleepless night. But I need it done. Probably better do it before my surgery too. In case there really IS something wrong with my heart.  My blood pressure is still high (150/90) but it is much lower than it was. So that’s something.

Ok. That’s enough for one day.

At least I am blogging again.  So much to fill in on this blog and catch up.  I want it to be a source of decent information, but it’s also my diary.  Lots of gaps. I will get to that one day.

I can feel the pain killers kicking in.  I want to sleep.  But I need to make some phone calls first.

And I need some food. Without some energy, none of this will happen. I am feeling so dopey from the oxycodone.  Impossible to find a dose that manages the pain yet doesn’t knock me out.  But if I eat, the abdominal pain will increase.  Absolutely no question.  Always the catch 22.  I will eat anyway.

I’ll be prioritising all of this as I go. It’s a useful list.  Wish me luck…

 

POSTBLOG!!!

Called security screen people. They want $110 just to show up and take a look. Ridiculous!!!  Time to get out my screw drivers…

POSTBLOG2

Why are surgery admitting forms so huge??? Are they aware that people going into hospital are quite often SICK??? No one reads them anyway…I know this from last time when NO ONE had a clue about my pre existing conditions, or current medications, even though I spent what seemed like several days writing them out on teeny weeny little lines in the form. Never enough space for us chronic kids…

And why can’t it be done online? Would be much easier to type and check boxes than try to write. I have to take breaks because my hands will not do this in one go. This is going to take a while…

POSTBLOG3

My anesthetist wants to charge an out of pocket fee of $1355. Utterly outrageous! I know she’s wonderful, and highly trained, and all of that. But seriously. Sick people, remember??? Sick people who can’t work??? There goes the money for the holiday that I keep promising my kids…Ringing her to see if she will negotiate.

POSTBLOG4

Bus pass for my daughter so she can get the bus to school. Massive form. Why do they need to know my maiden name??? are they TRYING to be difficult? Or do they just have a sincere love for extraneous detail. I’m not trying to get her a seat on Air Force One here…It’s just the school bus. *sigh*

POSTBLOG5

Holter monitor booked. Saturday morning. OR wait another month. Sorry, can’t wait a month. I need those results now. BEFORE my surgery. BEFORE I see my neuro again. FFS. So, I have to go with Saturday. They are not open on Sunday. So I will have to drive for miles on Sunday morning to return the damn thing to the only place that IS open. 20 minutes away at least. Whoever said Australia has the best health system in the world does NOT suffer from a chronic illness

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