Community, a.k.a., your cup of tea …

Someone close to me told me the other day they’d learned how to make tea. My first reaction was happy. This person is somewhat disabled, relying on a wheelchair to get around, and lives on their own. Any new thing that helps bring self-sufficiency and pleasure to them is a good thing in my eyes. My second thought (kept to myself until posted on this blog …) was, “We’re from the south, how can you not have known how to make tea until now?”

It’s odd how some seemingly simple things can cause you to start to think and this exchange was one of those. Tea is a remarkably simple drink made from two ingredients: water and tea leaves. But making tea is quite different. It can be easy as sun tea where you stick tea bags in a clear jug of water out in the sun. Conversely, it can be as complicated and exquisitely beautiful as Chanoyu,Japanese-green-tea the intricate and meaningful Japanese Tea Ceremony.

I think most of us walk around with the preconception that people similar to us have a similar background and knowledge of things. Like if you’re from the south you know how to make tea. But that’s not true and it’s certainly not true regarding something as complicated as rheumatoid arthritis.

We all reached our diagnosis from different backgrounds with different understanding of medical matters. Our doctors and their approaches are all different. How we assess and understand the information they give us is different. Importantly, how we each react to a treatment plan differs.

What is consistent is that through community we can share those experiences. We can find out things we didn’t know. We can help others through relaying personal knowledge. We can both learn and teach how to make tea.

While comforting by itself, people from London to the Orient will tell you that tea is a social drink. It’s best shared among friends. So is RA.

Thank you for stopping by and sharing this cup of tea with me.

A great, new support foundation


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If you’re reading this blog (and probably others), you’re no doubt looking for support and information about rheumatoid arthritis and related rheumatoid diseases and conditions. I continue to do this as well. When I was first diagnosed, I found which was like a lifeline — both to me and others.

Since then I’m very pleased to say that I’ve met RA Guy in person and am proud to call him a friend. Let me just say that I’m thrilled to tell you about his newly launched endeavor — The RA Guy Foundation. Please check it out and I encourage you to participate in whatever way you’re able — from subscribing to the newsletters to donating. To learn more, visit

RA Foundation


Progress (I think)


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It’s been about 10 days since I got out of the hospital and I am making progress. Some mornings it doesn’t feel like it, but I look back at the way I was gimping around with my walker when I first got home and I’m definitely loads better.

The walker only lasted for the first day or so to help me get up and down, but even after I’d put it away in the closet, getting up and down took some effort. Now most of the time I’m getting around without thinking about it a lot. I have to remember to put on my back brace when I leave the bedroom (for the next three months …).

I still do get tired easily — mainly, I’m sure, because I haven’t been walking/exercising as I should. Instead I’ve mainly been working which involves sitting in front of a computer and being on the phone. Not good for anyone and especially not good for those of us recovering from back surgery.

But progress is definitely being made, albeit not as fast as I would like. But then that’s always the case.

The big change that’s come with this surgery is a definite shift in perspective away from career and toward taking better care of myself. That’s all I can say at this point, but I’ll clarify things in a later post.

Thanks to everyone for their wonderful wishes and all their support. It has really, really meant a lot to me.

Thanks for checking in.

Post Surgery


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I’ve lost track of days (drugs will do that to you), but I believe it’s now Thursday and surgery was last Monday. We had to show up at the surgical center at the ungodly hour of 5:30 am for 7:30 surgery. It was tough getting up, but I like being the first case so you don’t sit around hungry and thirsty waiting for things to happen.

The surgery took just over three hours and went well. Afterward the surgeon said the disc was just complete disintegrated and the vertebrae were in pretty bad shape. But he was able to clean everything up, get the screws and posts in position and apply the spinal fusion material. He was still amazed at the amount of degeneration that occurred in just two years since my earlier surgery. A night in the hospital (filled with nausea, multiple failed attempts to draw blood, pain medication, etc.) and I was sent home on Tuesday.

I know it sounds awful — and it is a serious operation — but I’m doing quite well (considering everything). I’m gaining strength daily and can move around with little to no discomfort at this point. Getting up and down is challenging but I’m learning how to manage that without much effort.

My first foray out of the house will be Saturday afternoon when my husband is going to take me to get my nails done and (hopefully) an early dinner. I can’t drive for three weeks so I’m housebound unless someone takes me out for sun or I take advantage of the Uber app I just loaded onto my phone. I am doing emails and text so I don’t feel totally isolated.

I still get fatigued/tired pretty easily. Just getting a shower is enough to wipe me out for a while. But even that is getting better.

I won’t be considered completely well for at least three months, during which time I have to wear my back brace. Yuk! I don’t have to wear it 24/7. I have a trigger point of the bedroom door. As long as I am in the bedroom or bath I don’t have to wear it, but once I pass that threshold, I’d better have it on. At least I don’t have to sleep in it.

The really good news is that I can tell they worked on the right area of my back, so once I get healed up, my problems should be addressed.

The bad news? Each time you do spinal fusion, it puts greater stress on the vertebrae below it. I have now fused two levels in my lumbar spine (L2-3 and L3-4) which means more stress on the rest of the vertebrae and probably more surgery in my future.

More than anything I appreciate the great support and wonderful wishes that I’ve received from so many of you. That has helped more than you can imagine.

Thanks for checking in.

Being the (complicated) new kid


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I hate working with a new doctor. Part of it, I’m sure, is that I’ve had my current slate of doctors for a number of years. We’ve gotten used to each other. I like/respect them as healthcare professionals. I have them trained to understand that I’m an active participant in my health care, I know my body, and I don’t raise issues unless they are real issues. I am informed patient but I try to refrain from doing their job of diagnosis and treatment plans. Like old married couples, we’ve gotten used to each other and we’re still married.

I’ve had to “break in” two new doctors in the past year or two because both my PCP and my dermatologist passed away. But I don’t mind putting in the time and effort for permanent spots on my doctor roster. It’s a long-term investment in the relationship.

It’s the one-off relationships that take just as much time but have short-term benefits that make me crazy.

Since my TLIF surgery is in two days, I had to go in for my pre-op medical clearance this week. My PCP’s PA is out of town, so I opted to go directly to the surgical center for the labs and other tests. That way I knew I could get in and medical-recordeverything would be there and available to the surgeon and anesthesiologist in a timely manner.

First of all, everyone was perfectly nice. But let’s face it, I have a complicated medical history, and they look at you like, “Really?”, and you feel like a circus freak. And you have to go through everything the first time with the nurse who puts it into the computer and then you have to go through everything AGAIN when the doctor comes in. And I’ll no doubt have to go through everything YET AGAIN at the hospital.

  • Yes. This is my 10th joint-related surgery since mid-2008 when I was diagnosed with RA. In addition, I’ve had three epidural steroid injections (ESIs), two of them in the last month.
  • Yes. I take 11 prescriptions medicines, most of them daily, several of them multiple times a day. I also take nearly a dozen OTC drugs and supplements.
  • Yes. I am on my 10th drug for RA (methotrexate and nine biologics) plus occasional prednisone and steroid injections. No, my RA is not well-controlled at the moment.
  • No. I have not had any injuries, automobile, work or otherwise related that would account for the spine damage. See note above about RA that is not well-controlled.

I mean you can see it on their face. They come in and see an otherwise unremarkable person and they start sorting through the facts and figures of my health history. I start feeling like the Elephant Man. When you’re in pain and already stressed about having to have surgery, it really doesn’t help.

Then they stick you with sharp things to take blood for labs. (It took three tries.)

The good news is all the paperwork and associated stuff is now behind me. Surgery is in two days and at least then they give you drugs.

Thanks for checking in.

Joint Decisions Web Chats


Looking to build a support team to help you manage your RA? Joint the next Joint Decisions web chat – featuring one of my favorite bloggers — Mariah from From This Point Forward — as one of the panelists! It’s free!

The chat is called Creating a Strong Foundation: How to Build Your Care Team and Enlist Supporters in Your RA Journey. Mariah will be sharing her own incredible experiences live via webcam. There will even be an opportunity to ask questions!
(Don’t worry – the camera is only one way, so you can watch in your jammies if you want!)



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I wish this were a typo. I wish I was saying TGIF (Thank Goodness It’s Friday) and posting about some wonderful weekend adventure.

Instead, this post is about TLIF — Transforaminal Lumbar Interbody Fusion (TLIF) back surgery. That’s what I’m scheduled for on Monday. A link to more information on the procedure is here: Basically, the surgeon will go in through an incision in my back at the L3-L4 level, cut away the bone, remove the damaged disc material, insert some spacers and bone grafting materials, apply some spinal fusion bone materials, then screw everything back together again with screws and rods. When healed, this procedure stabilizes the spine both in front and in back.

I went through this same procedure about two years ago for the L2-L3 level and did well, so I am hopeful for the same result. At that time, the L3-L4 level right below it (where we are today), looked very healthy on the imaging studies. When I saw the MRI pictures at the doctor’s office yesterday, it looked like someone exploded a hand grenade in my spine. The disk was completely blown out, the vertebrae were all crumbled and gnarly with bone spurs, there was pressure on the spinal column (as well as elsewhere). It was a mess. The surgeon said he’d never seen such rapid deterioration. I explained that my RA hasn’t been well-controlled in at least a year, so that probably contributed to it.

This blows up a lot of things I had scheduled, including a wonderful four-day trip to New Orleans with my husband next week. I can’t drive for at least three weeks and won’t be able to fly for six to eight weeks. I’ll miss some work, but I will be able to work from home once I’m recovered enough, so that will help.

This is not the news I wanted, but after reading the MRI report (excerpted in my previous post), I have to say that I’m not surprised.

I hope whatever surprises are in your life today are good ones. Thanks for checking in.

Here we go “back” again


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The end of last year some of my various doctors and I decided I was having issues with my SI joint — the sacroiliac joint between the spine (sacral vertebrae) and the iliac — a bone in the pelvis. I had it injected (not fun) in December and it’s been pretty much okay up until recently at which time the whole situation came unraveled and I started having pretty consistent pain again in my lower right back.

So I went back to the doctor who did my injection and discussed that, in fact, the pain also seemed to be coming up a bit higher up in my back so he said he would also do an injection in the joint spaces right above the SI joint.

I have this love-hate relationship with steroid shots. When they work, they’re wonderful. When they don’t, well, they don’t. Spinal injections have to be done under anesthesia with the assistance of a fluoroscope. (Not quite like popping into my knee doctor for a quick touch-up.) The doctor injected four separate spots and initially the combination of steroids and pain killers really helped. But by a week later when I had my follow-up visit, I could tell that it didn’t really help at all. So he sent me out for anlumbar MRI.

This is what the MRI report said:

There is advanced degenerative disc disease at the L3-4 level, collapse of the disc space, endplate sclerosis, marrow edema, and exuberant anterior and posterior marginal osteophyte formation. These findings are new since the previous studies. There is a broad-based disc/osteophyte complex lateralizing right, and there is a right-sided caudally directed fragment of disc material extending into the right L4 lateral recess. There is moderate central canal stenosis. In addition, there is an extraforaminal component of the abnormal disc contour within and lateral to the right L3-4 foramen. This impinges on the exiting right L3 nerve and ganglion.

This is what the MRI report means:

I’m pretty screwed. I’ve blown out a disc in my lower back and the two associated vertebrae are a degenerative mess of bone spurs. All this has happened in the last 24 months because it wasn’t on the imaging studies I had done when I had my previous back surgery.

So yesterday I went back in and had my back injected AGAIN, but this time in the correct spot, hoping that it will at least calm down the pain. I go see the neurosurgeon on Tuesday to see what he says about the situation.

Not the best news I’ve had in a while. Sheesh. But I hope whatever news you have in your day is good.

Thanks for checking in.

Managing the Mental and Emotional Challenges of Life with RA


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My friends at Creaky Joints and Joint Decisions are holding one of their great Twitter chats featuring my personal (super) hero, Rheumatoid Arthritis Guy and Arthritis Introspective on Tuesday evening, August 25. The topic is Managing the Mental and Emotional Challenges of Life with RA. Please join in!

Twitter Chat 2 Promotional Graphic

Commenting on comments

One of the best things about this blogs is the input and support I’ve received over the years via comments and I welcome hearing from those who read the blog.

But I would like to point out that this space is a personal blog and, not to put too fine a point on it, it’s MY personal blog. It’s not an open forum where anyone gets to publish anything they want. While I generally just “approve” comments I receive, I have drawn the line on comments that want to use this space as a personal platform for politics, religion, and biased or bullying remarks. I have strong personal opinions on these topics (and others) but I don’t post them here and I don’t approve others’ attempts to post them, either. This blog was created as a conversation space mainly to share experiences about rheumatoid and related diseases and help connect people who have them.

I received a comment on my post about alternative and “recognized” therapies that was a rant very passionate discourse against “Big Pharma”. I recognize that a lot of people hold similar views. Heck, I have good friends who hold those views. And while the comment did contain some interesting information about an alternative therapy that was working for the commenter, after some consideration, I disapproved the comment. To me, it crossed the line on using my blog as a platform to further their personal attack on the pharmaceutical industry. Whether I agree or disagree, that’s not what this blog is about. Is this censorship? Yep. No doubt. But that’s the great thing about having a personal blog. You not only have the right, you have a responsibility to ensure that its content stays true to the intent.

Within moments of hitting the “disapprove” button, I got a second comment that was a wholesale, full frontal personal attack on me for disapproving the comment. I guess my not wanting this person to use my blog for her personal soapbox makes me a bad person.

If you want to bash “big Pharma”, debate politics, condemn people of other races, religions, or sexual preferences, there are plenty of other forums for you to do so. Or you can create your own forum by starting your own blog. It’s a wonderful thing.

Not because of the second “hate mail” comment I got, but because parts of the first comment were informative and did have relevance, I have posted the part of the comment with the information about the great results received with CBD patches (a cannabis-based therapy). This is the kind of information I want to share with my readers – things that might be helpful or supportive of others. All comments of this sort are welcome.

Thanks for checking in.


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