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Innana and Wendy

What you both say is too true.

I am of course speaking from my own perspective and not taking into consideration the complexities and variables of the disease - you are right. (Thanks for pointing that out to me so kindly and gently!)

It's quite a subject to get your head around! And it's very nice to have a chat about it with you girlies, who know much more than me!

I just wish I was Tinkerbell and could wave my magic wand and make everyone feel better. I am sometimes a bit overwhelmed by AS and it's effects and I want to try and help in the only way I know how and that's to pass on what has worked for me in the hope that it could help even one person to get their life back.

I get really frightened sometimes - for myself and others - I feel so helpless and not in control of my body. It's really scarey at times. Thanks for your encouragement.

Hi Tinkerbell,

I really understand that scary feeling. I have RA and so far the only thing which controls it is prednisone, which I'm very nervous about taking over the long term. Without prednisone, my inflammatory levels go sky high (CRP as high as 110, ESR up to 100) and I feel desperately ill and crippled. I'm now trying my 3rd DMARD which doesn't seem to be working, but I have to try each one for at least six months to determine whether it's working or not, so the process of finding a drug that might control my RA (other than prednisone) is long and miserable. I'm currently tapering off prednisone (now down to 3mg daily) to find out if the latest DMARD (methotrexate) is working and, as I said, it doesn't seem to be.

With the reduction in prednisone, my pain levels are quickly going up and life is returning to the daily battle with pain, weakness, fatigue etc. (as you know!!).

I wish I could find a diet that would be effective in RA. I already treat my celiac disease with a gluten-free diet. I fasted briefly before trying the NSD and had a slight reduction in pain, but it didn't go away and I can't continue to fast indefinitely. Also prednisone makes me extra hungry and causes weight gain so I feel like puffer fish. That doesn't help my self-esteem either. It all just seems sometimes like a horrible downhill spiral while I wait patiently for something, other than pred, so work.

If I could find a diet that completely removed my RA symptoms, I would jump on it.

Tinkerbell and Wendy, I'm enjoying this little discussion of ours.

Tink, like you, I wish I could just wiggle my nose and make this horror stop for everyone living with it. Also like you, I hope that in sharing my own experiences someone else might find a key, or part of a key, to what will help them. Keep on going with it, OK?

The fear you feel sometimes is understandable. Good grief, we're young women, some of our KA family are younger still, we'd be idiots if it didn't overwhelm us sometimes. Sometimes I look at people like Posse or Old George (a wonderful man who passed away a year or so ago) and am in awe at their attitude after a lifetime of this. I can only hope that I can be as inspirational as them to someone.

Wendy, I was wondering, have you ever tried eliminating the nightshade vegetables (eggplant, green red orange yellow peppers, potatoe, tomatoe) from your diet. Apparently, they may have an effect on RA. Just a thought.

Warm hugs,

Hello Wendy and Kat

Kat I'm so glad you're enjoying our chat - me too! I hope your suggestions work for Wendy. How are you doing at the moment? Do you have particular problem areas that give you trouble? My feet, lower back and neck are the most affected.

Wendy - having to try out meds like that for 6 months at a time must be so demoralising. I so hope you find something that helps you without being very damaging to you in other ways. Some drugs are such a double-edged sword aren't they? Promising to help you in one way and then stabbing you in the back in another.

You need all the self-esteem boosts you can get when you have a disease that makes you feel so old and frail before you should (RA and AS) - I don't know about you Wendy, but adding something else into the mix which lowers your self-esteem still further seems like kicking you when you're down.

The pred making you feel all horrible and bloated just gives you something else to carry on your shoulders. When I was diagnosed with AS I also had the worst eczema imaginable on my face (it got infected at one point and I woke up one morning and couldn't open my eyes because my face had swelled up so much!)

I could just about cope with the AS but the eczema was the thing that really hurt! I think it's a girl thing - I'm not vain but I've got my pride and the eczema somehow made me feel I'd lost my dignity. I went into work one monday morning and one of the men in the warehouse said to me "what happened to you at the weekend did you fall in bucket of acid!" I went straight back out the door and didn't come back to work for a week - I was so mortified and upset. Usually I would stick up for myself - but when your self esteem is so low you just can't take it can you?

I never realised what a huge differnce it would make to talk to others that understand you feel and vice versa. It's as important to support others as it is to be supported yourself because you get that feeling of fighting it together as one big team.

It's so nice to talk to you!
Big hugs to you both xx

Hi Tinkerbell,

Yes we are all one big family who understand and help each other.It is much better to be part of a group of people who understand what your going through.Some of the members on here enjoy a good laugh and taking the micky out of people laughter is a realy good thing to have.
Off course Im more serious about things not like Wendy and Kat they joke around all the time and as for mig shes one of the worse forever winding people up.As long as you stick by the wise ones like Alan and me you will be ok.


Kevin

Hiya Tink, yah, problem areas - today it's my right heal/achilles, my left lower back, my mid thoracic around the spine, my left neck, my right side just under the shoulder blade and my baby fingers (left in particular) are a bit weak and tingly. I know it would be much worse had I not had my Remicade on January 26, but the baby finger issue returned this week, less than a month into the infusion, my left sit bone started poking through my butt this morning.

I've never taken pred. Don't know whether I should have at some point, but I've managed to get by without it. I think one of the most poignant stories about a woman on pred being hit with that double-edged sword you spoke of was one of our members here several years ago. She was getting married and went for her dress fitting a few weeks before the wedding. The pred had swollen her up so badly that her dress didn't fit anymore. I felt so badly for her. Nobody, let alone a bride, should have to deal with that crap.

I've had eczema all my life, mostly on my arms. When I eliminated wheat from my diet, my arms began to clear up. I've never had such good skin on my bi/triceps before!! And don't knock the value of vanity in kicking this AS. Vanity is what has kept my posture good. I check it in shop windows, and whenever I'm near a mirror. It's a lifelong habit, started I think by my grandmother, who was always after us for posture.

Hugs,

last time i looked, i saw a conversation about paypal, so hadn't looked for awhile, delighted this morning to see such an interesting discussion, such a good sharing of ideas.

i agree that diets and their connection to disease are hard to study / would be hard to do a controlled clinical study, but can't help thinking about a book that i have which is cholesterol cures which is an entire book that discusses all the studies that have shown various (mostly diet) things that help with blood lipids. wonder how they have been able to tease apart the dietary things that work for diabetes, heart disease, and how those tactics could be used to understand diet and autoimmune inflammatory arthritis? on the surface, i agree with the statement of how hard these studies would be. on the other, if they can figure out these connections for other diseases like diabetes and heart disease, couldn't some of those successes be applied to this problem?

what i really enjoyed reading this morning was the very strong sentiment of everyone just really wanting to help everyone else.....and how that often means we use the main tool we have at our disposal.....sharing what has worked for us.

Yah, Kevin, Tink'll be OK listening to you and Alan like England would be under a month long blizzard!!

Although, truth be told, wisdom takes on many guises. Our two court fools may just be acting in the tradition of court fools throughout history.

Warm hugs,

Let's hear it for our court jesters!

HOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOORAH