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Re: Educating my family and friends .. . ideas? [Re: WhiteCell] #221826
11/21/11 03:02 PM
11/21/11 03:02 PM
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Miel Offline
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Thanks for your suggestions. My brother has information he could read; he either doesn't read it, or he only remembers the information that is positive and encouraging, so he thinks the disease is no big deal and I should be able to do everything I did before I got sick.

As for wishing me dead, yeah, it's very alarming. But he won't actively kill me. I take precautions when I'm with him, though, that an "accident" wouldn't happen without it being clearly his fault. He's very concerned with appearances and wouldn't do anything that would make him LOOK careless or heartless. Mostly, he just hints that I should kill myself and he keeps trying to get me to eat unhealthy foods. My cardiologist told me (and him) that I would be dead in five years if I didn't get my blood pressure down, which means, among other things, a low-fat, low-salt diet. Ever since, my brother has been bringing a pizza with him whenever we get together, something he never did prior to that diagnosis. That kind of thing.

Anyway, I was glad to see that other people have family members who are in denial about AS and that some work is hopefully being done to address that issue with literature designed specifically for family members.

Re: Educating my family and friends .. . ideas? [Re: Miel] #221850
11/21/11 05:41 PM
11/21/11 05:41 PM
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Cincinnati, OH
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JenInCincy Offline
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Originally Posted By: Miel
As for wishing me dead, yeah, it's very alarming. But he won't actively kill me. I take precautions when I'm with him, though, that an "accident" wouldn't happen without it being clearly his fault. He's very concerned with appearances and wouldn't do anything that would make him LOOK careless or heartless.


If you have to take these types of "precautions" this is not someone you should be alone with, whether he's your brother or not. This is very scary.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Educating my family and friends .. . ideas? [Re: JenInCincy] #221932
11/22/11 01:32 PM
11/22/11 01:32 PM
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Whidbey Island WA
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WhiteCell Offline
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I sincerely recommend that you speak with someone about this relationship.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Educating my family and friends .. . ideas? [Re: WhiteCell] #222165
11/27/11 12:38 AM
11/27/11 12:38 AM
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I, too, am concerned about what this relationship is doing to you! If you truely fear he will hurt you, you need to let him go. I know this sounds harsh but I have been in a similar situation with my mother. She is mentally ill and has always been abusive verbally. Two years ago it got to the point where I was afraid she would do something to me that she would later regret. She used to get angry and do things to people while she was mad and then say she didn't remember them later. (ex. She almost ran over my sister-in-law with her car.) I wound up moving away and not leaving a forwarding address. I am much happier now. (There were other family issues too.) Your safety is important! Your health is important! His whole attitude toward you is disturbing.

Please be safe.
Blessings,
Nisey


It is what it is!
Re: Educating my family and friends .. . ideas? [Re: nisey] #225480
01/16/12 07:19 AM
01/16/12 07:19 AM
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Sydney
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Shine Offline
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So, has anything come of the brochure? I could sure use it. My family are rubbish at supporting me. I don't think my brother has even acknowledged that I have Spondylitis!

Miel, please don't be alone with your brother. You need people around you who will lift your spirits, not someone who will drain your energy. He doesn't sound like a very stable person. Be VERY careful.


34yrs old: Partial Spondylitis diagnosis (sacroiliitis, synovitis of neck, synovitis of wrist), IBS (whatever that means!), Raynauds Syndrome, TMJ malfunction, Episcleritis

Currently on no meds. Managing with many different natural approaches. Doctor would like me to take DMARD after NSAIDs didn't work or caused allergic reaction.

Studying Nutritional Medicine part time and mother to lovely 5yr old daughter
Re: Educating my family and friends .. . ideas? [Re: funchefchick] #226962
02/09/12 01:22 AM
02/09/12 01:22 AM
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Tucson, AZ. USA
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I have the same problem, well it is going away due to horrible 'flares'. I do get the occasional call, "maybe all you have is...". I think this is the way they cope.

Jacquie
AS. 7 years Dx, Simponi, methotrexate, meloxacam, lidoderm patches, valtorin cream, Vicodin


AS dx'd 7 years, Simponi, methotrexate, meloxacam, lidaderm Patch, valtorin cream, Vicodin
Re: Educating my family and friends .. . ideas? [Re: WhiteCell] #227037
02/09/12 10:00 PM
02/09/12 10:00 PM
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Pennsylvania
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Hello. I would like to volunteer to help with the brochure idea.

Nan and Squeezie, I was wondering where things are at this stage. Please let me know if I can assist with writing or graphics.

As many of you wrote, I too have had trouble with having family and friends understand spondylitis. Most seem to have very good intentions and just want everything to be better, but it's difficult to relate to them emotionally and logistically. I can't imagine what it must be like to deal with people who are trying to interfere with recovery. Eek!

As of today, I haven't found a good solution yet for explaining what spondylitis is like--apart from referring folks to this site.

Last week, I joined the PEERS program to get assigned to a mentor. I am hoping the mentor can help me with learning additional ways to manage the condition and block out pain, as well as being someone with whom I can talk about what the extra-rough days are like. I am hopeful that this will help on many levels--especially with the feelings of isolation that tend to go along with the days that have more pain than others.

Thanks and warm regards,
Susan

Re: Educating my family and friends .. . ideas? [Re: funchefchick] #267346
06/23/14 01:31 AM
06/23/14 01:31 AM
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Newcastle, WA
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funchefchick Offline OP
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Hey I am revisiting this thread from a few years back. Since then my immediate family has come around after seeing me suffer in person for a while, so they finally have 'got it'. My family gets it, but my friends? Not so much. My very closest friends would like to understand but just don't, not yet. My more casual friends have just plain disappeared; moved on with their lives. I don't think they intentionally

But I still think a brochure targeted to to loved ones which has a *realistic* description of what the patient could be experiencing and how people might support them could be helpful. I think a lot of us have found the documentation about Spondylitis to be aimed at the newly diagnosed, and it aims to be not-so-scary. Like it tells everyone that with proper medication and treatment one can live a normal life. For some people that might be true but for a lot of us it just is NOT.

Do people think a brochure aimed at friends and family of Spondylitis sufferers is still something we should pursue? Does this already exist somewhere now? Thoughts?


FunChefChick and Pooch



Diagnosed undifferentiated spondyloarthropathy and Fibromyalgia Spring 2009.
Taking: Mobic (NSAID), Lyrica, Cimzia, Morphine Sulfate, Soma, Morphine IR.
Tried: MTX, Humira, Savella, Cymbalta, Enbrel
Had been employed full-time in the tech sector for 25 years; went on permanent disability leave starting April 2013.
Re: Educating my family and friends .. . ideas? [Re: funchefchick] #267787
07/29/14 08:35 PM
07/29/14 08:35 PM
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Funchef - a few thoughts, FWTW . . . I definitely get your point that in some families a too-cheery picture can undermine support, and I'll bet SAA staff do, too . . . I wonder if a page on the website clearly identified as a resource for family and friends might be less expensive and quicker to produce than a printed brochure. (I didn't see one, but maybe it already exists.) A simple, easy-to-scan design and links to more info, so the reader isn't overwhelmed by lots of text in often unfamiliar lingo on a potentially scary or depressing topic and with the bonus emotional charge of existing family dynamics. If staff creating the text wanted input, feedback, etc. from those of you who are really struggling with loved ones minimizing your struggle, I'm sure this group would be generous with it. Some of us would be more likely to email a link to family/friends than hand them a brochure, but a printable version of the web page is an optio, too. FWIW.

Re: Educating my family and friends .. . ideas? [Re: funchefchick] #267850
08/02/14 01:28 AM
08/02/14 01:28 AM
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Newcastle, WA
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funchefchick Offline OP
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Thanks for the suggestions! I am certainly open to different media formats. I'd love to have a more realistic page in the existing SAA content. I've heard from many other patients that the content is so cheery and 'you can live a normal life' type stuff that both family and friends dismiss the condition. It is reductive. I know that the creators were likely trying to remain positive, and trying not to scare the newly-diagnosed. That's all well and good, but people cannot realistically make plans for how to manage their disease if they don't have a realistic picture of how things are possibly, likely, potentially going to be.

So yes, content on a web page instead of or in addition to a brochure would be just fine with me. Heck, as far as production costs - I was thinking that a formatted PDF could be shared so that people can print their own double-sided pages as needed, free of charge if necessary.

I know that a single page of content is not going to solve everyone's un-supportive friends and family problems. But jeez I think it will feel better to have SOMETHING with our most frustrating communication issues clearly articulated and available to share, you know?


FunChefChick and Pooch



Diagnosed undifferentiated spondyloarthropathy and Fibromyalgia Spring 2009.
Taking: Mobic (NSAID), Lyrica, Cimzia, Morphine Sulfate, Soma, Morphine IR.
Tried: MTX, Humira, Savella, Cymbalta, Enbrel
Had been employed full-time in the tech sector for 25 years; went on permanent disability leave starting April 2013.
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