Your thoughts, emotional support, war stories ... I don't know what I need

General Support
1

There’s just so much going on in my head. Last week, I went to the foot and ankle surgeon. He declared my feet “terrible”. (Most surgeons I’ve met are a little more, shall we say, diplomatic than that.) Now if you were to look at them, they would seem like fairly normal, maybe a bit chubby feet, to you. The inside story, as told by the x-rays, reveals a mess of eroded bones in the mid-foot, jumbled together without joint spaces. My “bunion” joints, however, are unaffected by the disease – go figurrre. Anyway, my next conservative measure is to add rocker bottoms to my orthopedic combat boots. And, if I still can’t walk comfortably after that, I will be offered a total foot reconstruction involving multiple incisions, steel plates, and cadaver bone grafts, followed by 3+ months non-weight bearing and lots of physio. (It sounds to me like the kind of thing people that people have to have after really bad motorcycle or industrial accidents.) The FandA guy said that the surgery would make a knee replacement look like a walk in the park. OK then. So I need to be thinking long and hard about this, and I am.

So, I go and have rocker soles installed next week. And meanwhile, I think about the next move in this PsA chess game. If rocker bottoms don’t do it for me, do I even consider undertaking such a serious surgery? Or do I put “paid” to the notion, turn the page, and move on (with my mobility scooter)? I should add that I’m very, very good at surgery and rehab: I sailed through two knees and a hip, and my ortho considers me one of his stars. But this is different.

And even if I contemplate the foot surgery from hell, is recovery going to be impossible at all with a BMI of 36 or 37? How can I expect my foot to heal with that kind of weight on it? Twenty years of undiagnosed disease, pain, inflammation and immobility has left me insulin resistant, leptin resistant and 80 pounds heavier than I was in my pre-PsA days. Weight loss is the answer, of course. Easy to say, but at 62 and sedentary, albeit unwillingly (I am, by nature, an athletic busybody), we all know the chances of weight loss success without some kind of drastic intervention. The notion of weight loss surgery is on my mind, and I’m seriously considering running it by my doctor. I am at the very lowest end of the BMI scale for eligibility, but with my PsA and particularly my foot issues, I suspect I could be a candidate if I wanted. And apparently, after the kind of weight loss some people achieve, other problems like high blood pressure and cardiac risks diminish as well. That would certainly be a bonus. Should I consider weight loss surgery before I even let myself contemplate foot reconstruction?

But … but … but. Am I mentally strong enough to go through all of that? Will I regret it, and be left with another “disability”? Haven’t I been through enough already with PsA? Is there even a fighting chance that I’ll ever walk painfree again?

OK, my friends. Open for thoughts, comments, suggestions …

2

Seenie...that is a terrible dilemma. Foot pain and lack of mobility is such a big deal. In your place I would be thinking about all the same things you have mentioned. I not really sure how to sort this all out. I would definitely look to one of my doctors for info to help my though process. As you know, in the end only you can decide. No matter what the docs tell you.

See if the weight loss thing is possible for you and go from there. I think if it were me, I would seriously consider the foot surgery since without the surgery I'll end up with foot and mobility problems anyway.

You definitely need to weight the options and talk to your doc about what you're thinking before you decide.

I'm not sure that helps but I hope maybe a little.

3

Wow Seenie!
That’s one heap of decisions to wade through. I personally wouldn’t know where to start, and its all boils down to you and what’s best for you. I know you are good at weighing up all the options, cogitating and coming up with your plan. The wish to walk without pain or with little pain is life changing for you, so this is a potentially life changing string of decisions. I have no doubt you have a great team of specialist working for you so that’s one doubt you don’t have to consider. I wish I could wave a magic wand and you’re on the other side of this, and happy with your decision. Rooting for you <3

4

I know this isn't particularly drastic, but what if you saw a nutritionist, who could come up with a plan that you could work with. I did this once and did, in fact, have a drastic weight loss. Even if you just lost some weight, it would make it easier on your feet whether or not you have the surgery. And it would certainly make recovery easier. If you did it, would you be in rocker bottoms forever? At least relatively pain free?

It's really a lot to think about. The other thing is, at this point, is your PsA under control? That would be the first thing to do. I'm sorry you've got so much going on.

5

I think that 62 is entirely too young to give up on walking. You may not have a choice later on but there seem to be some choices now that will maintain your mobility longer.

6

Thanks, everyone, your reaching out helps, really it does. And Stoney, you are right. Been there – Weight Watchers, low carb, etc., and I do know exactly what and how to eat. (Nutrition is one of my teachable subjects.) The amounts I’m able to lose that way (being 62 and sedentary) will never come close to what needs to come off for this mission. If I could only walk my dogs for a couple of hours each day … if only there were a pool warm enough for my joints close to where I live … if only an exercise bike didn’t hurt my feet … I feel like PsA has me cornered now.
Sixty-two is too young, Sassy, and I used to define myself as a walker. I grieve that.
Louise, you make me laugh: I’m awfully good at sorting out dilemmas for almost anyone but myself!
Wow, I can whine with the best of them, can’t I?

7

You're not whining. You're deliberating. Whining is non-productive. But you're taking action and trying to improve your situation.

8

You’re right again, Stoney.

9

Question marks indeed! I don’t mind them, really, they send my thoughts off on different tangents, and that is good. Like a Greek island with a warm pool, and only lemons to eat. LOL
Your questions about nutrition are good ones, and ones that concern me too, naturally. I’m not a junk food or fast food addict, far from it: my diet consists of vegetables, salads and fruit with a wide variety of protein sources. I restrict my carbohydrate intake, and watch nightshades. Not at all like the people I see on weight loss surgery sites! If I think about the volume restrictions after WLS, my big wonder is whether I would be able to put up with the very small amounts of things like salad and fresh fruit that is allowed. After WLS, you are on vitamin supplements for life. Ugh. But would I trade my mobility scooter for vitamin supplements, I ask?
There’s my own question mark! Lots of questions … no obvious answers.

10

I'm very sorry you are facing such a problem. I agree that while being able to lose weight would help both before and after possible surgery doing so is easier said than done. Can I suggest that you look at other forms of exercise than walking. My mother- in - law (76) has a similar situation with both the pain and weight but has recently bought a small pedal machine that can be used by both the feet (on the ground)and arms (on a table) while sitting down and she is losing weight for the first time since becoming disabled. In my own case losing weight has reduced the pain in my feet but they aren't any where near as bad as yours. In both our cases it was helped by good diet and carefully charting calories in and out with the use of a Fibit device.

11

Seenie, I know you have probably tried every diet (or more correctly) life eating plan, out there.

It’s obvious you are convinced getting that BMI back to a healthy range would significantly help your feet - with or without an operation, and I believe you are right.

There are certainly some bad stories about weight loss surgery, but I personally know a couple of people who’ve done it, and it has really changed their life for the positive.

So I do think its worth seriously considering once you’ve done everything else (which I’m guessing you now have). There’s been some really interesting studies on how it almost immediately (yes i know - sounds intuitively improbable) changes insulin response, modifies gut flora, and a few other interesting indicators - generally for the better.

12

Oh Seenie! You have so much on your plate! So much to worry about.... such hard decisions ahead of you! And, yet, you are such a rock for the rest of us! My complaints are trivial compared to yours, yet you are always so sympathetic to me, and have helped lift me up when I'm feeling defeated by a fraction of the PsA problems that you have! I hope the new shoes help. The surgeries sound so scary... but then you've done well with other surgeries so hopefully you will do well if you choose to have one or both of the surgeries. All of us hope for the best for you! Thanks for getting this off your chest-it is not whining. PsA has taken its toll on you and you need to vent-like you told me, it helps just to be able to talk to others who understand.


Seenie said:

Question marks indeed! I don't mind them, really, they send my thoughts off on different tangents, and that is good. Like a Greek island with a warm pool, and only lemons to eat. LOL
Your questions about nutrition are good ones, and ones that concern me too, naturally. I'm not a junk food or fast food addict, far from it: my diet consists of vegetables, salads and fruit with a wide variety of protein sources. I restrict my carbohydrate intake, and watch nightshades. Not at all like the people I see on weight loss surgery sites! If I think about the volume restrictions after WLS, my big wonder is whether I would be able to put up with the very small amounts of things like salad and fresh fruit that is allowed. After WLS, you are on vitamin supplements for life. Ugh. But would I trade my mobility scooter for vitamin supplements, I ask?
There's my own question mark! Lots of questions ... no obvious answers.
13

You are all so kind and so supportive. Thanks. Jen, I have read all those studies, and yes, that is what they show. Still a scary prospect, though.

The part of this that really slays me is that my weight problem is also PsA damage. Years of uncontrolled inflammation, depression, pain, immobility – not even mentioning the damage that chronic inflammation does to the metabolic system. Since being diagnosed and properly treated, I’ve actually lost weight because I mentally and physically feel better. But that will never be enough to make a difference to the possible surgery. Have I ever mentioned how much I hate this disease? (Kidding…I’m still capable of a laugh, well, a smile anyway.) And have I ever mentioned how much I value my friends here?

14

Seenie,

So sorry that you're dealing with this difficult and overwhelming dilemma. In my way of working through things, this would be a plan of action. I'd aim to schedule the foot surgery for around 6 months time. Meanwhile I would be hoping the rocker soles give me just enough relief to get a bit more active. My physio, mentioned the cross trainer as being a bit more easy going on the feet. Coupled with some drastic diet changes this could get the BMI down to more desirable levels. If it becomes clear that this is not working (say after 3 months) switch to plan B and explore the weight loss surgery first and reschedule the foot surgery. Of course I'm not sure if your doctors or health care system are flexible enough to go with this approach. It would certainly be an impossible juggling act under the NHS. It's all going to take time, but hopefully this time next year you'll be walking your dogs again! Sending you my best wishes.

15

Ali, that’s exactly the kind of plan that I am formulating. The timelines won’t quite work in our Canadian environment, but I’m working on something like that. It’s complicated, like everything else about this disease. But I’ve dealt with complicated before!

16

Oh Seenie. I am so sorry you are dealing with this my friend.

First let me say I in no way see you as a lap band pt. You are not, nor should you be the targeted patient. Please do not go this route. I have a number of reasons I say this and I hope you are still my friend when I am done. You do not eat junk food nor excessive amounts. Your weight is do to enforced inactivity so therein lies our cure. I am hoping you get the rocker bottoms and are able to increase activity a bit prior to the foot surgery. You have sailed through total hips and knees with nary a wobble. I expect this surgery, while more arduous will be easy for you too. I foresee post surgical weight reduction due to you being active and enjoying life. And last but not least you enjoy good food and beverage why would you want to sign up for life long restriction? There are people that for whatever reason eat too much of the wrong types of food. That is not you.

I am your friend and I will support your decision in any way I can. I am just an old nurse with strong feelings on doing the right thing for the right patient and this is how I see it. It is your decision and I know you will pick the right thing for you. You always do.

<3

17

Thank you, Michael, the contrary voice in my head says exactly the same things that you do. And yet, permanent drastic restriction (with exercise) is going to be my life’s theme from now. And that spells permanent hunger as well as constant pain.

I need an old nurse to talk that kind of sense into me, but I also need to get the job done without spending the rest of my days starving. And I fear that this battered old body will never be active enough to make a whole lot of difference on the scales.

Studies show that with behaviour mod, diet, and exercise, median weight loss is something like 6-8 kg. Studies also show that people don’t keep that off. And 10 kg won’t make a bit of difference to the surgery. So my choice is suffering … or suffering.

A real friend calls it the way she sees it, my friend.

18

I hear what you are saying Seenie but I respectfully disagree. Probably this is my own pig headedness. When I am on a biologic that works I lose a tremendous amount of weight just in every day activities. Imagine what I could do with a well thought out exercise plan! There is about a 30 lb weight difference between me on a biologic and me on a biologic that has ceased to work. And that is with no restrictions. Esp on doughnuts!

Please tread carefully with any bariatric surgery. I would really prefer to see you do that after surgery on your feet if you need to. My money is on that you will not need it.

I am your friend no matter what you do. Friends are like that <3

19

I knew you were going to say that, Michael. And I respect and value your opinion. I am thinking and reading – and coming here to get honest feedback from people who I know have their heads on right. Thank you, my friend, and mousie ears to you! <3

20

Want me to send doughnuts and butter?

Hey hey, just kidding <3