Rheumatoid Arthritis and back to the real world

1
420
medications and scans

At the end of last year I got to complete breaking point with doctors, procedures, surgery, labs, scans…the whole shebang.

Over it.

I was completely exhausted by it all.  Not by my disease,  or any one thing specifically, just the sheer effort of maintaining my ‘health’, such that it is.  Normal people just don’t understand how much time and energy it takes to keep a sick body upright.  The number of specialists involved.  The appointments. The hours in waiting rooms.  The hours of recovery. The hours waiting on results, which sometimes could be life changing.

Anyway.  I broke. I really did.  Mentally and psychologically I fell apart.  I became overwhelmed, succumbed to depression.  I needed a break from the medical head game.

Today I realized it’s time to get back in the game.  Not by choice, by sheer necessity.

I have some scripts that need renewing, so I need to see my GP.  This week.

My left eye has been watering for about three weeks now. Constantly. I look like I’m crying all the time. It’s not red or sore, nor does it look inflamed.  But I have permanent tears running down my face. It’s awkward when people think I’m crying. And just plain annoying.  With all the problems that I have with my eyes, I need to go see my ophthalmologist.  I can’t get in to see her until the 19th of Feb.  Ages.  So I need an optometrist to take a look in the meantime, and make sure there’s nothing sinister going on. It’s probably just Sjogren’s.  But I need to be sure.

I need to get the bloodwork done that I was supposed to get done last year for my Esinophilic Esophagitis.  Allergy bloodwork.  I just didn’t get around to it.  Read: I could not face another waiting room.

The liver bloodwork that I promised I would get done within two weeks is overdue. This is bad because my liver enzymes are too high. And I am still taking methotrexate, because I don’t want to fall in a big, fat physical heap. Or no more than I already am.  So I really have to do that tomorrow.

I also have a fungal infection of the skin and an infection on my foot/toe nails. I need a skin scraping, and toenail clippings to be cultured and identify the infection.  I was supposed to get that done last year too.

Last year I started seeing a new GP, by chance. Because my usual GP was on Christmas holidays.  She is training in functional medicine and very interested in my case.  She is learning about diet, nutrition, leaky gut, methylation disorders and histamines and how all of that relates to autoimmune diseases. She has ideas and has given me referrals to doctors who are more highly trained and more experienced than herself, and she wants to help.

I mean she really wants to help. In part, she wants to start putting some of what she’s learning into action, and ‘guinea pig’ me a little.  There’s a lot of pure curiosity, but most of her is motivated by a genuine caring, and passion to work in an area that modern medicine openly admits it hasn’t got the answers to. Not even close.  She has read through my entire file (nightmare!) and looked at my long list of diagnoses and medications and side effects and surgeries and complications and she’s both fascinated and sympathetic and empathetic.

She has given me a list of things to check – standard stuff, like Vitamin D, thyroid levels, iron. And then there’s the not so standard stuff. The ‘functional medicine’ stuff.  Serum copper levels, zinc plasma levels, whole blood histamine, and the MTHFR gene test.

Down the track, she wants to look at homocysteine, coeliac serology and reverse T3.  She’d love to look at those now, but these are non-standard blood tests. They aren’t covered by medicare, so I have to pay for them.  And some of them are quite expensive. So we’re doing things slowly.  We’ll see what the first lot show and move on from there.

I thought hard about whether I want to do all of this. It IS expensive. Some of the functional medicine stuff is quite honestly total bunkum as far as I’m concerned. There are shysters ripping people off under the banner of ‘functional medicine’. And then there are honest, genuine practitioners who are working with evidence-based studies and the latest science.  That’s the side I’m interested in learning more about. And seeing if it can help me.

But it will cost quite a bit of money. I have savings, however. And nothing is as important as my health. I have to try.

I have seen a functional medicine practitioner before.  He was an acupuncturist and he gave me acupuncture and sold me a whole lot of nutritional supplements. When I wasn’t cured in six weeks as he’d predicted, he lost interest in my case.  He intimated that I wasn’t following his dietary advice, which was bullshit. I followed it to the letter.  Very similar to AIP, paleo based eating.  I didn’t enjoy it, but I stuck to it.

Why would I spend a fortune on supplements and then cheat the diet?

As happens so often with alternative practitioners, there is an inbuilt excuse for why their treatments don’t work. And it’s always the patients fault.  I didn’t follow the diet. I didn’t do the exercise. I didn’t BELIEVE hard enough.  Hmmm…ok, maybe the last one is true.

But I’m prepared to give this another go, because I have been reading up on the science, and there’s plenty of evidence there.  I am intrigued.  Functional medicine is not quite mainstream, but parts of it are starting to get there.  It is all heading towards individualized medicine, which is the ‘holy grail’ of all medicine.

The other thing we’re testing is pyrroles.  I have read about pyroluria before.  I thought that was bunk too, but there seems to be something to it. The test itself is very sensitive however. It requires an appointment, because the urine sample needs to be kept at the correct temperature.  Another appointment.

She also suggested a physio who is skilled in Clinical Pilates to help me with some core strengthening exercises. I do a lot of core work.  I know it’s essential for someone who has a spine as messed up as mine (spondylitis, spondylosis, degenerative disc disease, herniated discs, severe facet joint arthritis, stenosis…I think that’s it) to keep their core muscles strong. I do a pilates based class at the gym, although I haven’t been regular lately.  I can hold a plank for a minute easily, I do endless crunches and ab work.  I have good core strength.

I have lost a lot of strength over the last year however.  I keep doing it because as my spine degenerates even more, it may be the only thing keeping me out of a wheel chair.  Very much worth the pain that I endure during each class.  And the pain is considerable.  But it’s an investment in my future.

And yet I can’t quite face making an appointment with the physio.  I’m fairly confident that underneath my flabs I have some reasonably strong abdominal muscles, keeping my spine supported.  It’s on my list though.  The endless ‘I should do’ list.  Right now, I can’t justify that expense, when I can keep working at my usual class.

I have a follow up with my OBGYN sometime in early March.  The jury is still out as to whether my endometrial ablation was a success or not.  Which, of course,  means it wasn’t a success. I’m just waiting and seeing how bad symptoms become (they are worsening every month) and in a few months I will decide if they are bad enough to justify a hysterectomy.  Or if I can put up with it.

I can’t even find that appointment.  But right now my appointment schedule for the next six weeks looks like this:

 

5th Jan –  Bloodwork for liver, allergies

7th Jan – Optomotrist

8th Jan – GP scripts

11th  Jan – Gastroenterologist pre op admission appointment for endoscopy/colonoscopy

20th Jan – Endoscopy/colonoscopy

27th Jan -Pyroluria urine test

10th Feb – Dietitian

16th Feb – Psychologist

19th February – Ophthalmologist

20th Feb – GP follow up

22nd February – Allergist/Immunologist

Somewhere in there I need to see my rheumatologist again.  It depends when my script for Xeljanz is approved.  I also need to see my neurologist.  I can put him on the back burner, but I do need another follow up MRI.  It has been more than six months.  Gee, time flies when you’re having fun.  Somehow because I haven’t woken up on the bathroom floor recently, I can tell myself that the neurological stuff isn’t a problem.  And my neuro doesn’t really have any ideas anyway. I’m not at all sure how good a neuro he really is.  Admittedly there isn’t a treatment for the peripheral neuropathy. So why go see him when all that happens is we’ll look at eachother and say ‘Yeah, it’s still there. Yeah, it still hurts.  Yeah I still have problems with any one or all of my limbs going numb. Which is awkward when it’s a leg and I’m trying to stand on it’.

He’ll nod and have nothing to offer.  I’ll just keep having follow up brain MRIs and hope there is no sign of progression there.

Pencil that in for March. February is full.  I’m feeling overwhelmed again just thinking about it.

1 COMMENT

  1. Oooh, your Dance Card is as fully booked as mine! As if the appts weren’t enough, the sheer physical effort of getting up extra early, getting mobile, getting there, finding somewhere to park that isn’t too far to walk to-and-fro (disabled bays are always full – do they arrive overnight?) Walking through the labyrinthian hospital, standing in line to check in (hmmm), etc etc etc. Then the emotional load of trying to convey how things really are (any dr who’s opening remark is “you look well” and my heart sinks) and be heard – and get test results that you’d rather not deal with today, be poked and prodded and joints manipulated etc etc etc. Then do the whole journey in return – and, well that’s my whole day wiped out, all my ‘spoons’ used up and will have an ‘after effect’ for days afterwards in increased pain and fatigue.

    And then to have to do it all over again for another ‘specialist’ – I really feel how ‘over it’ you are – it becomes all consuming (energy consuming) and that’s something that those without a chronic disease process with pain just don’t get:-(

    Hugs, Cece xxx

LEAVE A REPLY

Please enter your comment!
Please enter your name here

This site uses Akismet to reduce spam. Learn how your comment data is processed.