Living with Rheumatoid Arthritis and Eosinophilic Esophagitis Monday 26 Feb 2018

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It’s Monday again.  And its time to take stock, again.

Last week I decided to stop Actemra.  It was no longer benefitting me (enough), and it is responsible for an almost 20kg weight gain, albeit gradual.  The last three months the weight gain increased in pace, and there was nothing I could do about it.  No amount of reducing caloric intake, or other diet manipulations, produce weight loss, or even arrest the gain, so I decided to stop taking the medication.

I suspect that surgical menopause has also contributed.  My hormones are not in balance. I am seeing my gynaecologist tomorrow for another testosterone implant.  I am hoping that improves my stamina and strength, which are both far down on where they were before the hysterectomy.

I am still eating less (far less most days) than 1200 calories per day, because I can only eat 3-4 tablespoons of food (most soft mashes and purees) without getting severe upper GI pain.  Even that amount of food causes painful bloating, and a distended abdomen.  Last week I had four minor impactions, minor because I was able to dislodge the food myself, and didn’t have to go to the ER.  All impactions are extremely painful. And gross.

So I eat very little solid food, although I am trying to eat more.  I have to chew thoroughly and eat mindfully, when I forget, or am in a hurry, that’s when the impactions happen.  My diet is extremely restrictive, but I am trying to make delicious meals that are also low FODMAP for the Chicklet, and fit into Gamerboy’s 4 food world view.

My tinnitus has been very bad this week. It’s always there, but it had been louder lately.  My hearing aid doesn’t work anywhere near as well as it used to, and my other hearing aid needs repair.  Must get to that this week.  I took the kids to a café during our open home, and I couldn’t understand anything either of them said, due to the background noise.  I get by with some basic lip-reading, and saying “excuse me” and “Pardon?” often.  Frustrating.

Peripheral Neuropathy has also been worse.  Burning, prickling, literally feels like hundreds of sharp little needles are being stabbed into my hands and feet.  It’s worse at night, as most things are.  Last night I slept less than five hours, and I don’t feel safe to get in the car and drive the kids to school this morning.

My eyes have been flaring, also. This morning they are swollen, red and gritty and extremely dry. I have eye drops, and the lack of sleep didn’t help, but this is an eye flare that has been going since last week.  My vision is blurred, particularly the left eye.

I tapered down to 15mg of prednisone yesterday.  My RA has been deteriorating as the prednisone decreases.  I’m still able to do two runs to school most days.  Today it’s my eyes, but another day it might be my RA.  I need a sale.

I have an offer on the house, and I’m hoping this one doesn’t fall through. This is the fourth buyer. It’s not sold until contracts are signed and exchanged, and it’s fallen through that many times, I’m trying not to think about it.  I do have a lot of admin to do, however.  Selling and buying is very stressful.  One thing goes wrong, and everything falls over in a domino effect.

I’m negotiating on a house to buy, but the agent doesn’t want to deal with me. He is making it harder because of a rude text message that the Chicklet accidentally sent him.  He blocked my phone number,  and refused to take my offer. Now he says someone else offered first, so I had to increase my offer or lose the property.  I am documenting all conversations (on my other number, the phone number he didn’t know was mine) as he is behaving very unethically, and possibly illegally.  My agent (the one selling my house) is helping me with the process, and what the agent is legally obliged to do.  My agent has known me less than three months and he is marvelling at the amazing amount of crap luck I have.  He tries to make light of it, but he is truly gobsmacked.  And he is very keen to help me, and no only because if I can’t make a deal on this house, the deal on MY house will fall over.  I believe he wants to help because he’s watched some amazing situations arise, and resolve, and he wants to help me get to a location where the kids are close to the school and life will be better.  I believe he’s a genuinely nice guy, and I’m focusing on that positive.

Foolishly, I didn’t account for how expensive driving the kids to school would be.  I am using a tank of fuel per week, and I’m spending $70 a week I wasn’t spending before.  That’s a big hit, and it is having a major impact on the fortnightly budget.

I am approaching people I know (I hesitate to call them friends, I simply don’t know) to ask for help with moving.  If these deals go ahead, the settlement will be quick and I will need to move within four weeks.

That will be physically extremely demanding, and I’m not even sure I can manage it.

I need to decide whether to up my prednisone again.  I need an endocrinologist, but she will not see me sooner because my GP wrote ‘suspected’ Adrenal Insufficiency on my referral. He is not aware of the Short Synacthen test I had a year ago which showed conclusively that I do have Adrenal Insufficiency.  I wish I had a specialist to manage my adrenal issues and my thyroid issues (not to mention pre-diabetes) because I’m tired of trying to manage it myself.  But in reality, she probably wouldn’t help much.  She would tell me that I can’t possibly have Adrenal Insufficiency because I don’t look bad enough.  Doctors often say that to me.

I need to find the box with my medical records in it and get a copy of the bloodwork.  But that is going to be too darn hard.  I have a lot of things I need to do to make this sale go through.  Little things for a healthy person, huge things for a sick person.  The stress alone wreaks havoc on my body, but there is no one else to take over, or take care of it.

My uni course starts today.  I am regretting signing up right now.  I am deeply anxious about it, and I don’t have the   I should have signed up for an easier course, in something familiar, like graphic design, or web design.  But I have been passionate about Nutrition for decades.  Each year I look at his course, and this year I got a pushy consultant on t he phone who signed me up.  I could have pulled out (I still can pull out, in truth) but I do really want to do this course. The first unit (I am only doing one unit per semester) is Anatomy and Physiology 101.  I am very interested in the subject matter.  Despite the fact that if I finish it will take me 10 years of more to complete, it gives me a path to the future.  I could practice as a dietitian, even with my disability, if I reach some sort of stability.  Mostly I need something to focus on, something different. A new direction.  I do believe nutrition studies and the human biology that goes along with that could be helpful for me in dealing with doctors.

Most of all, I just need something positive to focus on.

The lovely lady who was going to sort out my NDIS plan hasn’t gotten back to me.  I really would like to get a wig now. I can’t afford one, obviously.  It’s a luxury purchase, and there is no room for those.  But I have funds in my NDIS package to help me access the community, and a wig could loosely be defined as something that would help me do that.  I’m waiting to find out whether they will approve it.  I’m tired of being stared at.  And it will take three or four years for my natural hair to achieve any length, IF it grows back at all.

She was also going to try and help me get a cheap power assist solution, because I can’t propel my manual chair anymore – my shoulders are shot.

The Chicklet has a note on her door saying she believes she has a migraine. That’s new. Gamerboy gets migraines, up til now the Chicklet has not.

Gamerboy hasn’t gotten up in time for his first class.  He is 17 years old, I’m not treating him like a baby and waking him up. He has to get up himself.  This is, however, a huge risk.  The lessor of evils is babying him, however.

There are so many topics I’d like to blog about, but I don’t see me having much time until I’m in my new house.  I have to get my course set up and do the required reading, before my class this evening.

And now I have to look at my ‘to-do’ and get started on the multiple items…send contract on the purchase to my lawyers, call my agent, call my mortgage broker….maybe first another cup of coffee.

 

Postblog:  Gamerboy slept through his alarm, he intended to go to school today.  He can now deal with the consequences of his own actions.  Teachers don’t chase kids at college, it’s up to them to catch up on what they missed.

2 COMMENTS

  1. Hi – I’ve read nearly every blog you’ve posted. I, too, have moderate severe RA with some mixed connective tissue disorder components. I first got RA in 2000 nearly overnight. At the time i had two small children. It started in my hands, then knees, shoulders, feet, and on. I have been through the wringer but nowhere near as much as you. I powered through it the first year on Celebrex and then my rheumy got me in an Enbrel trial and I felt pretty darn good for about 3 years. Then Enbrel stopped working. Rather than try another biologic I started researching like crazy to find a “cure.” Of course, there is none but I went the extreme diet route…salad…more salad…organic…no meat except turkey, etc. For awhile I got better. Then that stopped working probably because it was impossible to keep up with two small children. So my rheumy put me on prednisone and Humira. Humira didn’t work and I sure didn’t want to stay on prednisone. Just 3 months of it gave me osteoporosis, but you know that drill. I’m totally with you on whatever it takes though to stand upright so you can raise your kids. I have to say that I am or was the ultimate caretaker like you. Burned myself out doing that and am sure that’s why I got sick. Anywho, after the Humira failure I started researching again. I have a bit of a medical background.

    So, I read your one entry on antibiotic protocol for RA and wondered why you stopped. I’m not presuming anything here. I can see that you’re smart and doubly savvy. Your writing is extraordinary and a delight to read. I thought maybe my story might help you. I found the antibiotic protocol in 2008 after 8 years of mostly misery. I started it on April 1, 2009. It’s a very long and hard road back to some semblance of health but you’ve been walking that road for a very long time so it’s clear to me you’re willing to go to any lengths.

    Here’s my story. I felt pretty good the first couple of weeks on minocycline at 100 mg.MWF (that is the protocol). Then the bottom dropped out and I felt utterly miserable for six months. Everything hurt and i was severely disabled, but like you I was so used to hurting and I had nothing more to lose. So, I stayed the course because so many people had had success. After 9 months I noticed i was having a few good days. Similar to what you described in your blog post after your first Actemra shot. It seemed like two steps forward and one back but I kept progressing. By December 2010 my rheumy said I was in remission. I wouldn’t say I’m in remission but I am at least 75-80% what I used to be. I live a relatively normal life as long as I don’t over due it. I still have disability but that’s after years of joint/tendon/ligament/muscle damage.

    So, if you’re interested check out the Roadback forum. I’m CMS12 on there. Most importantly read Dr. McPherson-Bown’s Book The Road Back which is contained within a book titled The New Arthritis Breakthrough. Again, I’m not presuming you haven’t already done all of this. It’s just your story touched me so much and I felt the need to reach out to you. I’ve never posted on any other blog.

    Best to you, Cindy.

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