The truth about living with Rheumatoid Arthritis

My story

Why I never get anything done or why parenting is not so simple when you’re chronically ill

So this is morning’s disaster, or why parenting with a chronic illness isn’t as simple as all that.

The Chicklet cried sick.  Tummy trouble, gastro.  The same stuff. She spent most of the night with me, because she was too anxious to sleep alone.  All because of the possible surgery, which I have reassured her over and over is unlikely to happen.  No amount of telling her to put it out of her mind works.  She isn’t even consciously thinking about it, in fact she is consciously trying to think about other things, but she still has that revolting nauseous, churning feeling, and a strong feeling of impending doom.

Anxiety. Doncha love it?

I know how she feels, and it feels horrible. But she needs to work through the steps and stop feeding that feeling. It’s the only way.

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Feb 2017 Immunologist appointment

Yesterday I saw my Immunologist.  She’s dedicated and a really caring lady.  She’s also quite fascinated with my case, and hasn’t gotten bored or frustrated or given up yet.  Most docs do by now.

She has doubled checked everything, and I definitely do have Eosinophilic Esophagitis, which should be impossible on the doses of prednisone I have been on.  Apparently Eosinophils (a type of white blood cell high levels of which may indicate parasitic infections and allergies and much more rarely, cancer) are very sensitive to prednisone, therefore my digestive tract should not be full of them.

But they are. Can’t argue with a biopsy.  Two biopsies.

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What happens when you push your body too hard too early

I made an appointment for the Chicklet at 9:00am this morning with an ENT surgeon, as recommended by her orthodontist.  We’ve already established that she needs braces (7K ouch!) but he felt that she needed to see an ENT surgeon about her adenoids.  News to me, but that’s a different blog post.

I made the appointment early so that she would miss as little school as possible. She has already missed several days of school and its week four of the term.  So I took the 9am appointment.

Mistake.

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What does chronic pain look like?

What does pain look like? Seriously. It’s effing obvious. It’s got nothing to do with how a person looks. Because you should have seen them an hour ago.

It’s a house that’s dirty. 

 

Its kids showing up at school in unwashed uniforms. Its kids who don’t have lunch. It’s a house with no food. Its kids not showing up to school at all. 

 

Its garbage over flowing. Its laundry, clean and dirty, everywhere. Its a garden that needs weeding. Its a garden that isn’t a garden. 

 

It’s a wheelchair in the corner. Its crutches and a walker and a walking stick and everything in between. 

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Full body megaflare but its pain with a purpose

Today is a full body megaflare knockdown day. I have taken all the pain meds I can take. More will only make me pass out. I’m sorry I’m not keeping up with responding to messages and posts. I’m not keeping up anything really. This level of pain is all encompassing.
 
This is the kind of pain that actually brings tears to my eyes, just trying to get to the kitchen to take my meds. It is a true full body megaflare, including my jaw and ribs. Wheelchair doesn’t help because my shoulders and wrists are excruciating as well. This is lie down and be still pain.
 
Tomorrow I drop to 7.5mg from 10mg, so this may be my life for a while. I’m emotional and teary sometimes but I am OK. I will be OK. This is pain, but there’s nothing going on beyond that.
 
It’s ‘just’ pain.
 
It’s the business end of this taper, and its taking me to a place where my rheumy is paying attention and going to get me the next biological, rather than turfing me as a head case. There’s a purpose to all of this, and that makes it much easier to cope with.
 
And maybe it won’t be like this every day. This could just be a knockdown *day*. Tomorrow can always be better. Always :).
 
I have been very quiet, and I am likely to keep being quiet. I thank you all for your good wishes and support!!! I have a few very good friends, and this page, and that’s a lot more support than some people have. I’m still feeling positive. I’m just in too much pain to blog much. But it won’t be forever. And it will get better :). #hurtingbuthappy