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

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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.

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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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