Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; When people dont believe you. Bit of a rant.

Just for the record, I'm off the NSD. Been of it for a few months.

Story of my life really. It's not like I go round telling people about AS etc, I'm the complete opposite. I dont want anyone to know. Im talking about my family.

Its bloody hard when you're in constant pain and at some times excruciating, unbelievable pain (like what happened in my Biology exam, one of the worst experiences of my life) and people (not trying to frame anyone here) dont believe you. I'm at the point where I dont talk about it with anyone except my dad. It is near impossible to talk to some of my family members about the NSD because they just claim its complete [*bleep*]. It also doesnt help when people in my family talk to others that also agree that a diet is complete nonsense for treating this condition.

What also gets under my skin is when someone (no names) in my family is always talking to their friends and 'professionals' about MY LIFE and the no starch diet that I used to follow. I ask them to stop but they continue to do it. Why cant people respect privacy?

What these people in my family dont realise is that the main reason why I dont get along with them and I suppose rebel a bit is because THEY DONT BELIEVE ME AND HAVE NEVER BELIEVED ME. It's difficult to explain all of the circumstances here but its been pretty tough.

I feel my posture getting worse, I even feel myself starting to walk differently. I dont want to freaking fuse up, I've got my whole life ahead of me. On the other hand, I dont want to lose alot of weight and be insecure about myself again. Its real tough.

Just sort of felt like saying this to somebody and see what you guys think from personal experience especially dealing with AS,

Hope your all doing well.

speaking from a 93kg anorexia cult member's point of view, some people just dont get it. let it all out is a good thing. i dont get on too well with my relatives either - i dont have to live with mine thank god. feel for ya mate hope you get an i-pod for christmas. could you do some pain management classes and/or regular physio to keep your back joints from fusing?

i've just learned to not share my health problems with anyone except my husband, a few close friends that see me every day and thus seem understanding, and here. most people just can't relate, so i don't bore them with the details. like on FB, i never mention health issues, just post pleasantries. or when i talk to my parents or siblings on the phone. this is where i can let it all out and not have to worry about poor hubby getting overloaded.

Hey you,
Wondered when you were going to pop back in.
Always thinking about you and wondering how you are getting on.

Hon, I don't know what you are doing to treat you AS at the moment, but I would suggest that if you are not doing NSD you need to try something else instead to guard against the inflammation/pain/damage issues that you are facing.

Exercise: stretching, swimming, walking anything gentle.

Medication: chat to your rheumy and see what he recommends and what you think might be the most useful/acceptable choice for you. Be honest about any fears or concerns you have. Is there anyway you can go on your own to see the doctor, and leave unhelpful family members outside? Can you see a different doctor at the surgery (not sure how it works where you live) as you have not got a good relationship with the current one?

Diet: even if you are not following the NSD, you can still try to avoid the worst cuprits or not eat so much of them, this could help your gut problems a little too maybe.

All in all, I would say don't sit there with no help or treatment, sweetie. I would hate for you to go downhill any quicker than you seem to be already.

Don't give up, Seb. It must be very hard for you at home, you have done the right thing to come on here - we DO understand what you are going through.

I wish I could do more to help you

Same here. Not even my parents believe my diet.
They think I will die if I don't eat rice.
They don't believe me even when I got better.
They think that's coincidence.
The best way to get over this for me is not to
tell them anything about the disease. Even
when I am in a flare, I won't tell them.

I am sorry to hear that you are off NSD.
If you can't follow NSD now, try some alternative
medicines, like apple cider, aloe vera, ginger,
garlic,etc. One at a time. I personally found
ginger is helpful.

Good Luck

It's tough if your trying to get people to understand your condition or you in general. After all how well are you willing to understand others and there conditions?
I personally dont bore people with my AS and whatever tx. protocol I am on. I dont want AS to become front and center of who I am. I am much more then an AS person. It's just one of the many things that make up who I am.

1. Keep a positive approach to your life.

2. Become a spiritual warrior. See yourself as healthy and happy. Exercise vigorously. visualize everyday to see yourself as a person who moves freely and feels great. (do not underestimate the power of this practise).

3. have compassion for yourself and all others. we only see the world through the prescription of our particular set of glasses.

When I went to the bakery yesterday to pick up a cake, there was a guy loudly voicing his opinion about GF food. As if it's a fad or something. I wanted to tell him that my step-daughter and neice will die within weeks if they eat gluten, so he should just get a clue... but I didn't.

Why are people so resistant to the NSD concept? Everyone knows carbs affect diabetes! Everyone knows that peanuts can kill people! Grrrr...

My dad used to hand out a card to people who spouted ignorance on a regular basis. It said "Respect the Truth".

People are always arguing the vegan and/or vegetarian issue as well, but I don't see why it's anyone else's business. If someone doesn't feel it's right to eat animals, what's it to me?

Okay, well that's my rant in response to your rant. Rude people just plain BLEEP me off!

Relatives... I remember when I started out with food experiments back 2005 and I started out with a vegan diet (I found kickas 2007). I just had such an unbelievable pain, especially the sciatica drove me nuts. I remember talking to my brother on the phone and I told him how bad I felt, his answer was:
"huh huh huh have you been eating something thats bad for you huh huh" - and no I did not missunderstand him. He was joking and thought he was hilarious.

But at least my wife and my parents believe me. I guess I am blessed to have them. What other people say about my AS and my diet. Well I try not to care, but I do get provoked sometimes. I try to think that I cant change every human that I meet, but I can at least change how I react to all fools that shows up with their stupid jokes and comments.

It is not possible to tell people about pain. I know many people with AS have been told it is in their head. So when Doctors can't find the problem it is your problem. You are responsible for your own health you can feel the pain. Lets face it even with a diagnosis "you have a progressive bone disease" it is hard to believe this is caused by what you eat. So it is our pain to treat and for me the only way i have been able to treat the pain is by diet and i am so pleased i found Prof Ebringer and this diet in time. George

hi seb,

i have a family member who does a similar thing. they dont disagree w/ NSD b/c they dont know im on it lol. i learned quickly that even though this person loves me and i love them... they just cannot keep their big [*bleep*] mouth shut. i have only told 3 ppl what im doing and these folks keep it to themselves. i dont tell other family bc they go tell the big mouth!! i like my privacy and i like ppl to respect my privacy. its unfortunate. ppl flaunting their OWN life and problems is fine but leave me out of it! hang in there, u r not alone!