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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
i second what donna is saying.
in 2009-2010 when i was in my worst pain and mostly at home, i reached out here, but didn't share much with my friends at work. i felt lonely and isolated, but if i had asked for their support, i'm sure in retrospect that they would have reached out. they each have young child, have been going through a lot of change in their personal lives, so i didn't want to bother them. in hind sight, i should have let them know then vs after the fact. its so easy for me to go within when i'm in trouble instead of reaching out.
if you've already tried, then i just want to say i'm sorry that no one will be there for you from the church.
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Blueforest
Unregistered
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Blueforest
Unregistered
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Oh Pea!
This is the first time I've been to this forum so I had no idea what you were going through. I am so sorry! Having a chronic illness is bad enough as it is without your family's support. I don't come here often but I always check my personal email every day. If you're feeling really blue please drop me a line. I'd love to hear from you. Many Hugs Silvia
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Joined: Nov 2011
Posts: 256
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Nov 2011
Posts: 256 |
Very sorry Pea. I am not very close to my family, aside from hubby and daughters. The in-law side have never liked me. I have friends. But I don't like to overwhelm anyone, and feel oftentimes that I am doing so just by existing. I have found that those who do love me have sometimes been offended by that. It's a fine line to tread, and it usually stresses me out to do so. My crafts and hobbies really help me distract me from pain, and focus. I urge to you find it in you somewhere, to pick up one of your favorite past times, and see if it helps to relieve the tension even a little bit. (((hugs)))
Iritis first diagnosed in 1991, presently recurrent and steroid resistant. Tested HLA B27 positive in 1996. AS diagnosed October of 2011.
Putting most of my eggs in the NSD and exercise basket, using only TENS, massage, heat and ice, and NSAIDS (sparingly) for pain. Drops for iritis as flare necessitates. Looking back I feel I would have been diagnosed with AS years ago, if I had found a rheumy earlier than 2011.
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
Pea, please call one of the ministers, tell him you need a visit. Chat for a bit and then ask him for prayer. It may be that each church thinks the other is caring for you! I have learned the most, when my heart is sore from the grind of living. I often write out my prayers, then read them aloud so that I am praying, not just thinking..
How can I help?
Br'er Lon
I keep the New Covenant, when I fail....I am pulled back into place by HIM.
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Joined: Feb 2011
Posts: 1,968
Captain_AS_Kicker
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OP
Captain_AS_Kicker
Joined: Feb 2011
Posts: 1,968 |
Just wrote a long update but don't know where it went! Thank you all for your caring and loving support. I hope I give half back of all that you give me.
Pea Diagnosed with A.S. 29 year's ago. Diagnosed with Fibro 10 year's ago. Remicade, Intrathecal Pain Pump 2013
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Joined: Mar 2012
Posts: 23
New_Member
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New_Member
Joined: Mar 2012
Posts: 23 |
I say you quit taking care of him! for better or worse is what I think that said.
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Joined: Aug 2012
Posts: 48
Member
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Member
Joined: Aug 2012
Posts: 48 |
I just read this, I know it's been a while since your last post but I am sending good wishes your way.
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Joined: Feb 2011
Posts: 1,968
Captain_AS_Kicker
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OP
Captain_AS_Kicker
Joined: Feb 2011
Posts: 1,968 |
It has gone from bad to worst. Can't leave because I am disabled and he know's it. What he is doing is mentally abusive. He told me now that last year when I was flaring bad for 2 months was too much for him to handle but at the time was faking it making me believe all was well. He does this all the time. Tell's me things that he wouldn't at the time or hasn't told me at all and then springs it on me to hurt me. I am nothing of the person I used to be. He has kept me now in the cycle of depression and panic attacks.
Pea Diagnosed with A.S. 29 year's ago. Diagnosed with Fibro 10 year's ago. Remicade, Intrathecal Pain Pump 2013
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Pea, I don't really know what to say, but wanted to send my support
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Feb 2011
Posts: 1,968
Captain_AS_Kicker
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OP
Captain_AS_Kicker
Joined: Feb 2011
Posts: 1,968 |
Thank's Sue. Nobody understands what is like to have this disease accept us on the board. Now he did it again on our way down on our vacation to see my boy's. Dropped another bomb on me. We got another EMDR specialist to take us when we get back. He has a job interview down her in Sacramento and might have to take it if they offer it and it sounds like they want him already. I asked him if he really wanted to do it with our marriage in shambles and he said yes because it will help to be down here out of the cold damp climate. I am in a crazy cycle.
Pea Diagnosed with A.S. 29 year's ago. Diagnosed with Fibro 10 year's ago. Remicade, Intrathecal Pain Pump 2013
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