The truth about living with Rheumatoid Arthritis

#hearing loss

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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30 Jan 2017 – update on the update

So update on the update, I can’t get my feet into my shoes.  Slip-ins only, and even then I can’t get my fat feet in far enough!  So I’m bringing thongs/flip flops back. I’ve always been a fashion maven and trendsetter. You watch, all the cool kids will be in flip-flops next week.

I need to get darker glasses!  Even with my sunglasses on, the light is too bright.  I won’t be driving that far again until this taper is over.  I can’t see properly and my eyes are so dry and painful. Not worth the risk.

I really can’t hear.  There were small children in the waiting room and the poor receptionist couldn’t find my films.  It took several attempts and ‘I beg your pardon’ and ‘excuse mes’ to tell her I just need the report. I explained I’m having hearing problems, and she was very nice about it.  But I really hate it.  Losing my hearing is bothering me very much.

Music has always been incredibly important to me.  I can’t play guitar anymore, and my voice has changed tonally thanks to cricoarytenoid arthritis, but with my hearing loss, I’m not able to hear a lot of the details in the music, which is what I used to love.  My ex and I and our totally pretentious indy music friends used to sit around and analyse tasty little licks and riffs and drum parts, and it’s all those little details that we enjoyed.  Those are lost to me now.

And I can’t sing.  Even when I’m talking, I’m not sure if I’m yelling or talking too soft or if my volumes are appropriate.  I’m fine in one on one conversations, where there is no background noise.  But out in public, the world is just a buzz that drowns out my ability to hear individual voices.  My ears feel blocked and full of pressure. It’s not painful, but its uncomfortable.

I can’t walk far without blowing up like a balloon. I feel like Mr Staypuft the Marshmallow man.  My feet swelled after a few metres of walking and feel like the skin is going to split open. My knees are full of fluid and don’t want to bend…ditto for my wrists.  My fingers are fat and clumsy and I can’t grab anything safetly. Now that I’m home I have to elevate my feet and ice everything to try get this swelling down.

I remember when I was very, very pregnant with my son. I had pre-eclampsia and needed to be induced because my blood pressure shot up way too high. I was full of fluid then, great big beach ball shaped blob, but I could feel the fluid everywhere, all through my body.  That’s what this feels like now.  Yes, my joints are squishy but my whole body feels that way. It’s hard to describe.  Not liking it though. I’m glad this taper is going fast, because I want to start treating this stuff.  In three weeks I will be at 5mg.  Bring it on.

I doubt I’ll be able to exercise, as soon as I move, I just feel like it’s making the swelling worse.  But I’m told that exercise will make it better. So I will try, later this afternoon. See if I can do a gentle spin class, or even just ten minutes on the recumbent bike.  I won’t be able to work hard enough to get my heart rate up, but maybe moving my body will disperse some of this fluid.  I hope so.  Can only try.

But for now, its eye gels and drops, ice packs all over and elevate my feet for a while.

Rheumatoid arthritis and when the awareness raising has already been done

hearing aidI have hearing loss in my left ear, and wear a hearing aid.  It is such a tiny little thing, stuck behind my left ear that I never thought anyone would notice.  And I was happy about that.  This device is nothing like the hearing aids of old, and is completely unobtrusive.  I forget it’s there. In fact I have had a shower with it on…bad idea.  They don’t like water.  Ooops.  Lucky for me it dried out fine and is still working.

At dog obedience training this week Elke and I moved up to a new class, with a new instructor.  Immediately after we went through the class introductions, the instructor came over to me and said:

‘I notice you have a hearing aid.  Please, if at any time you can’t hear what I’m saying, just raise your arm and I’ll repeat myself.’

She then she told the rest of the class that I was hearing impaired and to please keep in mind that it would be hard for me to hear over the background noise, outdoors, multiple dogs and people conversing.   She asked if anyone else had any disabilities or issues that might affect their ability to train.

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Hearing loss and hearing return…however fleeting, means the diagnosis is wrong

I had the most amazing thing happen today at gym. It’s a light workout day – walk on a treadie for 20 minutes. Tinnitus has been especially loud today…and pulsing. Delightful. Still, you get that. Mostly I’m so used to the tinnitus I just block it out. I lived with a drummer for 20 years. What can I say. I did pick up *some* skills from that relationship.
Anyway, I’m walking at 6km an hour trying to loosen up my hips and knees and ankles and Justin Timberlake is doing his dance, dance, dance thing on the very medium screen TVs, when my ear goes POP!

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Appointment with the Otolaryngologist, or Ear, Nose and Throat surgeon.

Ok, this guy could not have been less interested in me. What is it with me? I am totally disinteresting to everyone. No one wants to know.

I have had major hearing loss in my left ear, and minor hearing loss in my right ear. My right ear is still within normal limits, so the recommendation from the audiologist was for a hearing aid in my left ear, to improve my hearing and the constant tinnitus I now have.  But before I can get a hearing aid, I need to be checked out by an Otolaryngologist (ENT), because unilateral (one ear only) hearing loss is unusual, and there can be several causes for this which require treatment.

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