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What do you say to ignorant folks? #282348
01/08/19 03:10 AM
01/08/19 03:10 AM
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worldofme Offline OP
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When I talk about my condition to someone and let them know the issue i have they immediately look at me and say you lose more weight and arthriis will go away.

The other day friend of mine and I were watching TV there was a commercial talking about living long and it said in life you only need to control your glucose and inflammation by eating green food that you will live longer.

My friend turns around and says see just eat right all your spine, head, neck, inflammation will be gone. So I turn around and say you eating pizza and burger 4 to 6 times a week, why don't you have SPINE problem?

He ignored me, continue to watch tv saying I always argue.

Really, WTF this makes me so much mad. Only if this was cure by some veggies

Re: What do you say to ignorant folks? [Re: worldofme] #282349
01/08/19 03:27 AM
01/08/19 03:27 AM
Joined: Jun 2012
Posts: 568
Los Angeles, CA
RAHMBA Offline
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I'd be pretty darn rich if I had a dollar for every cure someone told me to try... "a friend had [arthritis / bad back / inflammation / etc] and did x and it's completely gone"

I think they are only trying to help.

I don't think everyone understands that we are not asking for them to solve a problem.


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: What do you say to ignorant folks? [Re: worldofme] #282351
01/09/19 06:11 AM
01/09/19 06:11 AM
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sdot Offline
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Buddy, we are totally eff'd. I get people telling me about home remedies.. Like if I could rub olive oil on myself and it would cure me, but I just enjoy biologics and celebrex too much.

Re: What do you say to ignorant folks? [Re: worldofme] #282379
01/12/19 11:15 AM
01/12/19 11:15 AM
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achala Offline
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I find it quite hard to find the balance and I am just at the onset of AS (no fusion, just beginning of erosion phase). I see many people here damaged from the disease, which does not give me much hope. Even with the new generation drugs and with the risk of side effects. Somehow this support forum is a double edge sword for me but I keep coming back because noone else can understand my situation. People around me try very hard to educate me with alternative therapies, mental balance: yoga/meditation/exercises/diet/emotions/self healing/oil of olive/hyaluronic acid etc and I try to apply that (no to the large extent as you cannot change personality within 1 week) but I keep trying. every month i get new symptoms of this degenerative disease and I research and research and I have noone to communicate and talk about my findings to because everybody fed up (and I have relationships to manage too), doctors think they are the smartest and dont want to talk or dont have time. but then I hear there are people with successful stories so I shouldn't give up, but all I take for now are losses.


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with iridociclitis Nov 2017 (4 flares so far) - bilterally DES,PVD
Eosinophilic Gastritis
Signs of inflammations/erosions on MRI`s for axial and Achilles/calcaneus + bursitis
Naproxen (occasionally), Sulfasalazine 3000 mg per day
Supplements: vit A&D, reishi mushrooms, fish oil/probiotic/ Mediterranean NSD
plenty of swimming
Re: What do you say to ignorant folks? [Re: achala] #282384
01/12/19 07:50 PM
01/12/19 07:50 PM
Joined: May 2018
Posts: 116
Iowa City, IA USA
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DadCue Offline
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Originally Posted by achala
Somehow this support forum is a double edge sword for me but I keep coming back because noone else can understand my situation. People around me try very hard to educate me with alternative therapies, mental balance: yoga/meditation/exercises/diet/emotions/self healing/oil of olive/hyaluronic acid etc and I try to apply that (no to the large extent as you cannot change personality within 1 week) but I keep trying.


I totally understand about the forum being a double edge sword. The internet in general is that way. I tend to worry about stuff that doesn't really apply to me. Sometimes thinking about what could happen is far worse than what actually happens.

Everyone seems to have a different experience. It is good that you educate yourself and are open to trying different things. I firmly believe it is mostly trial and error to figure out what works and what doesn't work for you. Hopefully, your doctors are open minded enough to keep you headed in a good direction.

Going forward, I hope you will have your share of wins to offset your losses. You seem to be a sports fan so that will be to your benefit. Anyone who is sports minded understands wins and losses.

The personality part may play a big role. It can be your best friend but also your worst enemy. I believe, based on the content of your posts, your personality will mostly be your friend.



Re: What do you say to ignorant folks? [Re: DadCue] #282387
01/12/19 11:22 PM
01/12/19 11:22 PM
Joined: Jun 2012
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seymour Online
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Originally Posted by DadCue


I totally understand about the forum being a double edge sword. The internet in general is that way. I tend to worry about stuff that doesn't really apply to me. Sometimes thinking about what could happen is far worse than what actually happens.


100% true.

I remember when I was 25 I thought I'd be fused by the time I reached 30 and now I'm 33 and absolutely not fused. A vast majority of the time my worries are worse than my reality.

Also sometimes what you read on paper can seem worse than it is. I know a guy who was fusion in the hips, lower back, upper back and neck, and yet still works full time at 56 and you wouldn't even know he has AS. It limits his movements but not to the extent that he can't do the things he used to. Most people don't use their full range of motion in their daily lives anyway.

What I'm saying is yes if you come here you'll see people who are "damaged" from the disease, but some damage can be dealt with and doesn't mean you won't be able to have a full life.

Also, people with mild AS don't come online to tell you they feel good. This is important to remember. You write on support forums when you have a bad case or are in a flare. That fact alone should make you take these boards with a certain pinch of salt.


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