Recovery and back into the fray…the medical and disability to do list never ends

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Yesterday I was thrown back into the fray.  After about two weeks of being psychologically and physically incapable of dealing with any aspect of life, I was feeling clearer.  And the emails were stacking up.  And there was information I needed from my doctors, my OT, my NDIS planner. And information I needed to provide to them.

My immunologist called to tell me she had reviewed my short synacthen test and it was Ok.  (It only took her a week). But she’d discussed my case with the haematologist at her practice and they agreed that if there is a disease process that has been masked by my prednisone use, it will manifest at 2mg of prednisone, so I don’t need to taper any further.

Thank the gods.  I was dreading going lower again.  While I don’t have adrenal insufficiency now, it is always a risk, and will continue to be a risk for the next 12 months, if I remain at a low doses, or even if I keep tapering, but more slowly.  Any stressful event could induce adrenal crisis, so I will continue to be aware, and make others aware by wearing my medical ID.

We also discussed my Eosinophilic Eosophagitis diagnosis.  Given that my symptoms have returned and swallowing is again painful, and I have had a few mild impactions, she wants me to return to the strict Top 8 elimination diet.

I had just started eating again, three days ago.  Sigh.  The diet is very strict.  She has ‘highly recommended’ that I see the dietitian that I saw previously.  The diet is so restrictive, it requires a dietitian to manage.  But she is very expensive, and she seemed to be all about teaching me to read nutritional labels and explaining what the big words meant. I know all that.  I know where the hidden sources of gluten are.  I know that maize is corn. I know that barley contains gluten.  I don’t need that kind of help.  And when it comes to introducing foods, she just dithered and changed her mind. First it was ‘introduce wheat first’, because my allergy test came back positive, then she changed her mind and decided we’d do that last.  She said we’d leave dairy until second last, because it was a common allergen.  She reminded me that eggs do not contain dairy. Really???  But I can’t have eggs either.

But I will have to consult with her.  Again, it might be easier to just do an elemental diet and not eat at all.  No fun at all, but very, very simple.  Expensive though. But the amount of food that gets wasted in this house is expensive also.

So I have to go back to fruit, vegetables and rice.  No eggs, meat, soy, grains except rice and oats, dairy, or corn.  Sigh.

I’m having in depth blood work done in a week, testing all the usual things, CBC, LFTs, inflammation markers, as well as my ANCA (always negative) and complement factors.  But the most important thing is the eosinophil count. If that is still elevated, I’ll need the biopsy.  I still hope that it will go back to normal, and everything will be OK.  It’s possible.

My rheumatologist also called. I told her about my immunologist and the short synacthen test.  She offered me a steroid injection into my hip joint, because it has been very painful, and though there is only minor inflammation on the ultrasound, the head of the femur is very irregular, I have mod/severe osteoarthritis, and this is probably the cause of my hip pain. Both hips are the same.  The only treatment is cortisone shots, which usually help, and surgery. I can’t face surgery. Both my shoulders need doing, I can’t deal with it.  My hips hurt more, but I know I can manage the recovery of an upper body surgery on my own.  Even just an arthroscopic cleanout of a lower body joint will leave me completely off my feet for a while, and unable to drive. So I can’t do it.  Despite home care services being available to me via NDIS, I have seen the quality for these services. They stink.  So I can’t get anything surgically repaired that will take me off my feet.

My rheumatologist is very happy that I am down to 2mg of prednisone, but she couldn’t track down my short synacthen test results, despite there only being one place in town where they are done (endocrinology department of the public hospital), and despite her being copied in on the results, so she should be able to access them online.  THAT is the quality of health care in this region.  By the time I went in late yesterday afternoon, she was still unable to get the results.  She’ll chase them today, because she wants to see for herself.

The injection into my hip joint went fine.  If it helps, she’ll do the other hip for me next week.  As for other treatment, she’s waiting on what happens with my immunologist’s testing before even considering putting me back on any rheumatoid arthritis medications.  My inflammation is mild on ultrasound.  Much of my pain is most likely now caused by osteoarthritic damage, and damage done from years of uncontrolled RA.  I’m taking Naprosyn, the low dose of prednisone and a lot of oxycodone to manage pain.  I’m doing better than expected, but I have no energy, no appetite and no strength.

I have improved enough to use my wheelchair.  For the last few weeks I wasn’t well enough to sit up for more than a few minutes.  I can only manage to propel the chair on the flat, and indoors, however.  My shoulders don’t have the strength to push off, and engage the power assist.  I can’t go outdoors, or up ramps in the chair.

I can walk a limited amount, however.  And some days I can drive.  Mostly I am still housebound.

I have been chasing my NDIS plan, because the review is done, but they didn’t notify me.  And they have made yet another mistake, so I still can’t access the money.  I have hired a private case support manager, because my local area co-ordinator will not return my calls. It is HER job to sort all of this out, but she doesn’t know how. So she just ignores me.  Wonderful system, the NDIS.  I am far from the only person having this problem, however. And there are people with far more serious medical conditions who are going without.  It’s a shambles.  But I have handed it over to my support worker.  It’s annoying that I have to pay someone to fix something that should be simple.  But there seems to be no other way, because the local area co-ordinator won’t do her job.

I also had to get in touch with my Occupational Therapist. She is assessing me and my home and recommending the home modifications I need to make this house more disability friendly. I have already done most of the simple things myself – switched the door handles to levers instead of knobs, installed mixer taps that are far easier to use because I have poor grip strength and function, non-slip mats.  All I really need now are some permanent railings to help me support myself in the bathroom, and near the stairs.  I don’t want to make many changes to this house, because I realise that I will have to move from here.  I don’t want to waste NDIS money.  It’s taxpayer money and it’s a gift, not a right.  I’m frugal with it, as I would be with my own money.

Assuming I ever am able to spend any of it.  My Occupational Therapist is trying to get me an appropriate wheelchair, and she’s horrified at how I was treated.  She said I fell between systems in the worst way, and can’t believe that it wasn’t foreseeable.  Hate to be cynical, but it was totally foreseeable.  Bottom line, she is going to apply for funding for a new power assist and light weight wheelchair, that WILL allow me to go outside, and over footpaths and up ramps.  But it will take time.  Another six months at least.  Considering this process started over a year ago already, I’ll believe it when I see it.   That’s why I bought my own chair and a second-hand power assist. It does part the job, but not all.  But at least it’s something.  I had to self-fund, and while that sux, it was the only way.  So I did what I needed to do, and borrowed money.

My OT is doing her best.  But I’m far from her only client.  Like the plan itself, it’s all hurry up and wait.

I have tried to sack the cleaning company.  They won’t call me back to start that process.  Hard to sack people who won’t return your calls. I have documented everything, and emailed the manager.  In the meantime, I have no cleaner. And I can’t hire another one until this is sorted.  Loop back to my case manager, getting my plan sorted, so I can hire someone, and round it goes.

I’m in a holding loop everywhere.  It’s frustrating and stressful.   And I’m really too sick to deal with it.  But there’s time limits so I have to.

I still have to make an appointment with the dietitian.  I’m sure there’ll be a long wait to see her too. And then I have to follow up with my gastroenterologist for another endoscopy.  I’m in no rush there.  Again, I just can’t deal with procedures and more medical stuff. Every appointment seems to lead to two more referrals and two more appointments.  I have to stop.

Both my kids are having their own problems.  Both of them are talking to me about what ails them, but only one will accept professional help. They both need it.  School goes back tomorrow.  Though that’s stressful for them both, I hope that the return to routine will help, and by this time next week they will be calmer.  And to be honest, I need the time alone.

I am seeing Dr Mike tomorrow.  Talking to him will help.  But, as always, a lot of this can’t really be changed.  But having someone professional to talk to will help.  I am recovering, but I’m still fragile.  Too much stress and I will break again.

I’m very sad to have to leave this house, and I don’t know where I want to move to.  Somewhere flat.  I want to stay here.  Each of my kids needs something different. Again, I can’t please them both.  And I can’t please me either.  So logic will prevail.  But I need to fix a lot around this place, I need garden work done, and I need painting done. Finding people to do that work is the hard part. People who will show up and actually do a decent job, and not charge the earth.  It means more phone calls, and more time spent chasing people.  And then when its done, I’ll need a lot of help moving.  The idea of packing everything into boxes and moving is pretty unbearable. Not to mention impossible.

So I’m not going to think about that too hard.  I’m going to keep slowing cleaning up and throwing things away, and trying to sell things that are worth something.   Small steps. And small thinking. When I look at the big picture, its overwhelming, and it’s not a happy picture.  So I don’t do it.

Small chunks.  Blood test next week.  Deal with OT, NDIS and sacking cleaning company this week.  Oh and braces for the chicklet.  Don’t know how I’m going to pay for that, but I better start selling things!

And get my Etsy store up and running.  And design some more T-shirts.  And work on my uni course that I signed up for.  Plenty to do…

3 COMMENTS

  1. I can totally empathise with all the health related stuff that needs attention and being too sick to handle it. I am extremely worried about the transition to NDIS. My GP seems to think it will be better for me and enable me to access more but I am worried there will be more burden on me. Like you, I have issues with stress and adrenal insufficiency. The thought of moving house would be overwhelming to me. Also The holding pattern thing is so real. The demands of the NDIS and planning, research, paperwork etc. plus other changes to other support services all at once mean that after I have dealt with that, I have no energy left for my own life, for achieving my own personal goals. Everything I was planning for myself in 2017 has been put on hold. Ironic when you see the NDIS advertising that it is there to help us reach our goals – so far it has just stopped everything in its tracks. I wish I could say something more encouraging or supportive besides ‘you are not the only one who feels like this.’

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