The truth about living with Rheumatoid Arthritis

#diet

Eosinophilic Esophagitis Treatment and my treatment plan

I was diagnosed with Eosinophilic Esophagitis (EoE) several months ago.  I was referred to an immunologist/allergist, and have now seen a dietitian who has a special interest in Eosinophilic Esophagitis treatment.

While there are conservative approaches for this condition, my case is severe and I need to follow a strict elimination diet, to figure out what I am allergic to and improve my symptoms.

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Eosinophilic Esophagitis (EoE) and why it sux

I was diagnosed with Eosinophilic Esophagitis (EoE) months ago, from a biopsy taken during my endoscopy.  I thought it was nothing serious.  But it can be. And I have a complicated case.

For months I was only able to eat pureed food.  And even that became hard to swallow.  My esophagus was dilated during the endoscopy, and I was able to eat again. But that was about six months ago and symptoms are returning.

So I saw the allergist/immunologist yesterday and she basically said nothing adds up about my case.

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Rheumatoid arthritis doesn’t go away for special occasions

fruitnveg_croppedYesterday was my son’s birthday.  I spent a large part of the day ‘resting’.  Watching.  Following behind.

Not really taking part.

Rheumatoid Arthritis doesn’t just go away when I want it to. No matter how much I begged the powers that be the previous night to please, please let me have a good day for my son’s birthday, they didn’t answer.  The RA gods decided that my ongoing mega flare would not let up for the day.

I also am suffering the worst of the side effects of Humira.  For four to five days post injection, starting 24 hours after injecting, I get the most intense anxiety and depression.  It feels like grief.  Crushing pain in my chest.  I can’t breathe.  I have the most awful thoughts, the worst of which being that everyone would be so much better off without me.

I know they are just thoughts.  Thoughts pass through your head, and the trick is to let them keep going. Do NOT hold on to them. Do NOT give them a home to dwell in. LET THEM GO.

I have my own set of ‘rules’ for managing depression.

So I know what it is, and I certainly do not act on any of these thoughts. But they are persistent and unpleasant.  I also experience a physical need to cry.  I just burst into tears for no reason.  Or I’ll just be watching TV and tears will start rolling down my face.  Not even I know why.

And then there’s the anxiety.  I get crippling attacks, where I am convinced something awful will happen. I will crash my car.  Someone is coming to get me…bogey man???  Please!

None of this is very ‘like me’.  All of it is completely out of character.  Normally I am a happy, positive person.  I have worked hard to be this way.  Somehow Humira undoes all of this.  It peels away all of the defences I have worked hard to build and lets all the attacks of the world get through.  It allows all of my regrets and failures to stand centre stage and monopolise the dialogue in my head.  It makes me cry.

Now please, with the greatest of respect:  Do not tell me that anxiety and depression are symptoms of Rheumatoid Arthritis, and NOT the Humira.

I have taken 6 shots now.  And each time it has been exactly the same.  The first time the mood changes lasted the full two weeks.  I almost didn’t take the second shot. The second shot lasted a week. And since then the side effects have lasted four to five days.

It is the humira. It is repeatable and predictable.  And each time, after it passes, and I am due for my next shot, I tell myself that I can cope and that I need to take my next shot to keep rheumy on side.

But no more. I am done.  This crushing feeling in my chest that the world is going to end is too much to bear when there are no longer any positive effects of the drug.

And I get other side effects too.  My mood in general is lower. I have a horrible bloated stomach.  It’s not always painful, but it’s uncomfortable, and nothing fits me around the waist.  I have no appetite, and yet I have gained more weight.

When I look at all the drugs, none of them have helped (except prednisone), and all of them have made me worse.

So I need a break from the drugs.  All except prednisone and maybe Naprosyn. And ofcourse endone.  Although I need to take less endone. I am almost out again, and my doctor will not be happy.

But I need a detox.  So I’m looking at diet again. I’ve never had any help from dietary changes before. But I keep reading about how other people have great success.  I guess I’ll try again.  The Autoimmune paleo approach seems perfectly  healthy to me. But very restrictive.

Being that I am pretty  much bed ridden ever day now, I have to try something.  My only other option is to up my prednisone. Again.

And I can’t do that.  My eyesight is at risk.

So.  Understand that I am NOT saying ‘go off your meds’. But my body needs a break.  Rheumy will want me to do the full six months on humira.  I will not.  I have done 12 weeks, or 3 months, and that is the minimum requirement for a ‘fail’.  She does not know what this feels like, and doesn’t have to live it.

That may mean the end of the treatment line with her. If so, then so be it.  I only have one drug left available to me anyway.  Actemra.  Infusion. I’m not ready to go there, anyway.  My body needs a break!

So back to reading about diet.  Even if it helps a little, it will be worth it.

Rheumatoid Arthritis and weight loss (cachexia)

weightlossWeight loss is a touchy subject.  In the ‘healthy’ world it’s a touchy subject.  It seems almost every woman wants to lose weight, whether she needs to or not.  We’re conditioned to believe that weight loss is good.

But sometimes people lose weight because they are unwell.  They may be very unwell, and weight loss is a sign of many serious diseases.  But this doesn’t occur to us, because weight loss is so revered in our culture.

So this post is just asking people to please, stop and think.  Remember not all weight loss is good.  What if a person is losing weight because they are sick?  What if they have an autoimmune disease that is completely out of control and ravaging your body?  What do you get?

Well, this is what I got.

You look great! (Genuine compliment. Er, thanks…)

How are you losing so much weight?  Tell me your secret! (Stops listening at the mention of the word ‘arthritis’)

You have lost too much weight now – you are starting to look gaunt! (Jealousy rearing its ugly head.  Yeah, that’s right.  Be jealous of the sick girl. )

One of my close friends actually told me what the mummy crowd was saying about me behind my back.  Too thin.  Looking old.  Looking tired.  Funniest comment was that I had developed a turkey neck.  (Turkey neck.  LOL.  Yep, that’s really going to upset me when I have full blown rheumatoid arthritis…but thanks for your support!)

My friend just continued to tell me I looked great and she wished she could lose weight too.

At least she wasn’t bitching behind my back.  She was trying to enlighten me about what people were saying about me.  It hurt, but it actually helped me turf these people out of my life. Added fuel to the other insensitive things they had done.  One of the women was the one who told me ‘rheumatoid arthritis is not a serious disease anymore’.

At no time did any of them consider that I wasn’t well.  That I couldn’t keep food down.  That my body was fighting a disease 24/7 and it wasn’t weight loss, it was wasting they were seeing.  Even when they noted that I was looking too skinny for my height, and that I looked ‘tired’.

Still no one bothered to think that this weight loss might not be on purpose.

My rheumatologist was very concerned.  He would see me once every three months or so, and I would have lost another 5 kilos.  I lost nearly 25 kilos in all.  He continued to run more tests, he has always been convinced that there is something more serious going on than seronegative Rheumatoid Arthritis.  Technically he diagnosed me with Mixed Connective Tissue Disease (MCTD), which was a combination of Rheumatoid Arthritis, Sjogren’s Disease , myositis and Lupus.  I meet the diagnostic criteria for Rheumatoid, but not quite for Sjogren’s or Lupus.

So he was concerned about weight loss.  To him it was a clear sign that my systemic disease was out of control, even though my blood work looked good.

A good rheumatologist will not rely on blood work alone.

Weight loss because of disease is termed rheumatoid cachexia.  Cachexia means ‘wasting syndrome’ – muscle atrophy, weight loss, loss of appetite, anemia and of course fatigue.

The formal definition of cachexia is the loss of body mass that cannot be reversed nutritionally: Even if the affected person eats more calories, lean body mass is still lost.  To a doctor, this indicates a primary pathology is in place.

People often relate this to cancer.  But it also occurs in serious autoimmune diseases as well, among others.  Cachexia is caused by tumour by products (in cancer) and cytokines which are over produced in Rheumatoid Arthritis.  (Biological DMARDs basically work by blocking various cytokines)

Makes sense.

I guess it’s another way that rheumatologists can assess the severity of disease.  I’m only realising in hindsight why I was considered ‘moderate to severe’ when I am seronegative and all my blood work is generally pretty good.

All my reading told me that seronegative rheumatoid arthritis was generally mild.  I believed it, because I wanted to believe it.  I was in denial, and in some ways, I still am.

Years on, I realise that my disease has never been mild.  Had my blood work been positive, I would have been able to access more aggressive treatments here in Australia.  Would it have made a difference?  I don’t know.  There is really no point wondering about it. I am here, in this place, now, and the only way is forward.

So how to combat the weight loss and muscle wasting?

  1. Healthy diet.  Lots of good nutrition, healthy calories.  I increased my protein intake considerably.  It was hard to eat more when I had no appetite, but it was necessary for my health.  I didn’t gain weight, but I slowed my weight loss.

 

  1. Quality multivitamin.  Just to top up my nutritional needs.  Rheumy said it sure can’t hurt.  This was added to the folic acid, vitamin D and vitamin B supplements I already take.  And fish oil.

 

 

  1. Lift weights to preserve muscle.  The real danger of the weight loss is muscle wastage.  I lift very light weights for someone of my size, but adding a Pump class to my gym routine helped me retain lean muscle mass and strength.  It also may have helped me work up and appetite!

 

This was all really hard work.  And it was totally misread as me trying to lose weight, rather than me trying to preserve my weight and fight my disease.  Insult to injury.  Happens a lot with RA!

The thing that really stopped and then reversed the weight loss was starting on prednisone.  That beloved/hated drug that does so much good and so much harm at the same time.  The weight gain aspect didn’t worry me much –  even though I am now about 10 kilos heavier than my ‘ideal’ weight (whatever that really means).

It’s hard to care so much about your weight or not fitting into skinny jeans when you’re fighting Rheumatoid Arthritis.  Perspective is a wonderful thing…

But I’m sure my ‘friends’ are happier now.  I’m sure they are now talking about how much weight I’ve gained!

Of course these people are no longer my friends.  Silly me, they never were my friends!

Rheumatoid Arthritis and Diet – take two

The last two weeks have been incredibly busy.  I moved house.  I have spent the last week doing some unpacking. But there is several more weeks of unpacking to go.  The house is set up, basically. Enough to live here.

My RA has gone rapidly downhill over these last few weeks.  I have maxed out the prednisolone, maxed out the Arava.  Still taking Plaquenil and Naprosyn, although neither of those seems to be helping at all.

And I am still in full body mega flare mode.

All of these drugs should be controlling my pain and inflammation…but they aren’t.

Why?

Well, moving house is very stressful.  Then there is the emotional impact of the end of my marriage.  While we have been separated for 18 months, both of us actually buying separate houses and finalising things through the courts still hits hard.

Also, for the last few weeks, my diet has slipped badly.  I have been eating lots of processed convenience foods.  Lots of bread…a quick sandwich here and there.  Not enough vegetables.  Not enough fruit.  Lots of sweet coffee for energy.

And then there is the exercise.  I haven’t had time to go to the gym and do my usual Yoga/Pilates based class, my Pump class, my Spin classes.  Instead I have been packing boxes, unpacking boxes, lifting, bending, reaching… very hard on the body.  Not enough rest.

All of this means I have seized up shockingly.

While diet and exercise can’t cure my RA, NOT exercising and eating a poor diet definitely makes things worse!

So I am back on the diet bandwagon.

As of today, no more dairy and grains.   I am going back to juicing fruits and vegetables – my current favourite is carrot, apple and cucumber.  Lots of intense nutrition in freshly made juice.  Because I am in so much pain, I don’t have any appetite.  Juice lets me get vitamins and minerals into my body in an easy way.  It’s also got loads of calories, so I don’t really need to eat.  Except to take my meds.

I will do this for a few days, and then I will have to add more food. Some eggs, lean meat.

And I will keep researching…follow what others do, and hope it helps me.  I am willing to do anything.  Because I am really struggling to get through this pain right now.

I know I will. There isn’t really a choice.  I will always get through it.

So I would love to hear about anything that has helped others.  Diet changes, supplements, exercise whatever.  I will try them all.  And let you know if they help me too.

A clean diet is the start.  Then I will look more closely at ‘inflammatory’ foods. I have been reading some research about gut bacteria and the connection to autoimmune disease.  Lots to keep me busy.  Anything to take my mind off how my body is feeling.

So fire away, please comment here, and/or on the facebook page.  Thanks!