About weight loss …

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I mentioned in my previous post that one of my primary goals in improving my health is getting back down to a healthy weight. I have a way to go. I also have high cholesterol, high blood pressure, high triglycerides and the occasional borderline high glucose. In addition, the extra weight is murder on my joints (as if RA wasn’t bad body-weight-scaleenough).

I sound like a weight-loss commercial when I say I’ve tried low-carb, no-carb, commercial programs, Weight Watchers (which really works), and just trying to watch what I eat.

I looked at bariatric surgery. I have friends and family who have successfully lost weight with lap-band, but I am so sick of surgery that I can’t hardly to stand to think of it. Plus there are long periods of follow-ups with these surgeries. Then I ran across the gastric balloon which is non-invasive (it’s a balloon they place in your stomach). It remains in place for six months, during which time the average weight loss is 20-30 lbs. It costs about $6K and is not covered by insurance. Then I thought, if someone would pay me $1K/month to lose five pounds a month for six months, could I do it? So I’ve decided to keep the money in my own bank account and just be very serious about losing the weight.

But how?

When I got a new PCP about 18 months ago, I also got a relationship with his PA, whom I adore. I would have to do several posts about why that is, but when considering such a major change in my life, it just felt right talking to her about it, and I was right.

She said there are four elements when it comes to weight loss:

  • Diet. Diet is critical. Not only lowering your calorie intake but making sure you get enough calories so that your body doesn’t go into starvation mode. If that happens, your body start hording calories, which also causes stress which makes you put out stress hormones (such as cortisol) that act a lot like prednisone. The key is trying to get good nutrition within a reasonable calorie allowance. I had originally thought 1200 calories, but she had me move my calorie target up to 1300 to make sure I was getting the nutrition I need. To help, I track what I eat with My Fitness Pal (www.myfitnesspal.com). The basic plan is free and you can track online or on your computer. It has thousands of foods including packaged foods and restaurant items as well as letting you input your own recipes.
  • Exercise. Okay. This is really, really hard for me but I am hoping that once I get healed enough from my surgery and I’m no longer working full-time that I can get back to the gym/pool. This is my goal. I will soon have no more excuses.
  • Mental. This is critical. You have to be motivated (I am). Beyond that, you have to understand the mental and emotional triggers that cause weight gain. I eat when I’m stressed and my job causes a great deal of stress, so by retiring, I’m removing a huge contributor to my weight gain. Not everyone can quit their job, but it’s important that you learn coping methods for stress. As noted above, stress hormones act just like prednisone in many ways (and my waistline proves it).
  • Medical. I take about 10 oral prescription medicines and a handful of supplements and vitamins. Add to that the OTC pain relievers, allergy meds, occasional rounds of prednisone, etc. and you can understand why taking even one more pill was more than I wanted to consider. But I knew I probably need some help to jump-start this plan while I wind down my work and help me get used to eating less. The PA recommended a drug called Saxenda. It’s marketed under another name to help diabetics get their A1C results in line. It was noted that diabetics were also losing weight right and left while on the drug, so FDA agreed to let it be marketed for weight loss under the Saxenda label. It’s a daily injection, but after years of taking injections for RA, that didn’t faze me. In fact, the needle is so small that I don’t even feel it going in. The down side is that it’s not covered by insurance and it’s very expensive. The PA gave me a starter sample that is good for a couple of weeks and I’m about to find out how expensive as I’m picking up the first prescription today. The PA said that she could prescribe it under the other label so insurance would cover it, but she’d have to give me an official diagnosis of pre-diabetes, which I really don’t want. She also said she’d be glad to provide samples if she has them (which she doesn’t always). I’m very impressed so far. I’m not hungry — at all. I’ve even lost my stress “munchies”. The problem I have is getting enough calories in since I really don’t want food.

So that’s where I am. I have a lot of work to do and I know it will take me several months to attain any significant weight loss and to get in better shape. But I have the motivation, a plan, and medical support (along with that of my husband), so I think I’m off to a good start.

If you have RA and are carrying around the extra weight, I urge you to start making changes, however small, to reverse that situation. Nothing will pay more dividends not only for RA, but your overall health.

Thanks for checking in.

Seminal Moments


We’ve all had those seminal moments – instances where everything after that point changes. Maybe it was that moment when you knew you wanted to get married – or divorced. The birth of a child. The death of a loved one. Graduating from college with the overwhelming question of, “What next?”.

I think that for many people, being diagnosed with rheumatoid disease certainly qualifies for one of those life-altering events.

Many of those moments are the expected culmination of a series events (such as the birth of a child). Others, like the one I just had, are not.

I’m of the age where you start playing what-if games with retirement planning. A few years ago I had decided that I would retire at the end of 2013. As they say, if you want to make God laugh, make a plan. Thanks to the severe realities of having to provide for both health insurance and medical costs, here I am still working, full time.

But not for long. …

Read the rest of this post at www.rheumatoidarthritis.net: https://rheumatoidarthritis.net/living/seminal-moments/

TLIF – Three Weeks Later

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Yesterday I had my three-week check-up after my TLIF surgery on my L3-L4 vertebrae. I’m glad to say that recovery has been pretty uneventful with the exception that I’ve developed an allergy to dermabond — that great super glue that doctors now use instead of sutures or staples. I was having a lot of incision pain until the dermabond finally wore off and it suddenly stopped. I still had a rash around the back surgery croppedincision, but a bit of cortisone cream quickly cleared that up.

This is a pretty bad photograph of the Xray of my spine taken yesterday. It shows the previous TLIF surgery on L2-L3 and the more recent procedure. There is the obvious hardware stabilizing the spine along with the sort-of visible interbody spacers (those up and down specs between the vertebrae). What’s not really clear here is the mass of bone packed in to build the fusion to further stabilize the spine.

As with anything else, there is good news and bad news. The good news is that the surgery fixed the problem. The further good news is that I got a good bill of health from my surgeon and was cleared to start driving. Bad news? I have to wear the friggin’ back brace for three months. I also can’t start working out in the pool for another three weeks as a precautionary measure to help guard against incision infection. The really bad news is that each time you do a fusion it put more stress on the vertebrae below it, so I’ll probably have to go through this again in another few years. It’s only been two years since the last time I had this done. RA seems to accelerate these schedules.

In other news, today is full of doctors. I need to get my labs done for my rheumatologist appointment next week, I have Xrays and a follow-up appointment with my orthopedic surgeon who replaced my hip and knee, and an appointment with my PCP to discuss the effects of a new blood pressure medication and talk about losing some of the weight I’ve put on (thank you, prednisone!). I’m sure I’ll have more to report after all that settles down.

Again, thanks to everyone on their support and good wishes during my recovery. It has meant a lot.

Thanks for checking in.

Happy World Arthritis Day 2015

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So today, October 12, in addition to being Columbus Day in the US, is also World Arthritis Day (www.worldarthritisday.org). I’ll apologize now for not getting you a card, but I suspect that anyone reading this blog is already very aware of arthritis. Personally. Every day.wad-logo

Cynicism of designated days aside, I do think that anything that brings awareness to (per the website) “rheumatic and musculoskeletal diseases (RMDs)” is a good thing. Awareness brings $$$ and $$$ brings research and research brings new treatments and hopefully, ultimately a cure.

An example of this came across my inbox over the weekend. CVS Health, which operates CVS/pharmacy locations and a specialty pharmacy has become “the exclusive specialty pharmacy ‘partner for better living'” of the Arthritis Foundation. (The link to the announcement, which also includes links to some great online tools and a free mobile app, is here: http://cvshealth.com/content/cvs-health-expands-national-partnership-arthritis-foundation-become-exclusive-specialty.)  

I am realistic enough to understand that CVS isn’t (completely) making this arrangement out of the goodness of its corporate heart. By offering what truly are useful tools and needed services and aligning themselves with the Arthritis Foundation, it stands to increase its income from arthritis patients. But, guess what? That’s the way the world works. And I am very happy that they chose to do this. All corporations have limited resources but nearly an unlimited number of places they can use them. The fact that a major pharmacy has made this kind of commitment to supporting arthritis patients is, to me, a great step in the right direction.

I’m not sure how you’re going to celebrate today, but I am going to be thankful for the many organizations, both charitable and corporate, that make it their mission to raise awareness of RMDs, to promote research, and to support patients. Without them, there would be no hope.

Have a good day. Thanks for checking in.

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 RheumatoidArthritisGuy.com 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 www.raguyfoundation.org.

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

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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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