Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Needing support

Hi Everyone: My name is Shari. I have been battling AS for 10 years and have tried NSAIDs, DMARDs, biologics and Prednisone. Currently, I am taking NSAIDs, Prednisone, Tramadol and sleep aids. I am prone to infections so I can't take too many meds to suppress my immune system and when I do get sick now, I need stronger antibiotics and a longer course. I have tried the no starch diet and it didn't work but did not eliminate dairy. I still have mild to moderate pain daily and my survival has been my daughter, who is 6. She has brought me so much joy, and I believe AS has helped me have compassion for others and I cherish my time with my daughter.

Enbrel worked the best for pain and fatigue but I kept getting sick .

My husband tells me my disease is all in my head, doesn't let me talk about it, is irritated when I ask for help with anything but tells me he wants to stay married. Other than his lack of compassion, he is a wonderful person.

I have modified my lifestyle so I can be more comfortable. I am not working, rest on and off throughout the day, eat healthy and walk for exercise. I used to be an Occupational Therapist so I am hoping I can help you guys with any therapy questions.

Looking forward to getting to know all of you .

Shari

Nice to have you aboard Sheri :-)

I completely understand how you feel my daughter is what keeps me going on a day to day basis. My husband, although fantastic, doesnt seem to understand I try to get him to read but he gives me the excuse that he hate reading. He is supportive but just wish he understood.

I really do hope that you find relief soon and again glad you found us. This AS family has help alot in my struggles.
Nat

Nat

Hi Winter,
We have been having this same conversation about unsupportive spouses here and in the women's section. I'm glad that your daughter keeps you going.

You will find a lot of support and information on this site. Please come daily.

My first ex wife wasn't very supportive, neither was my second ex wife. Now that I am near death, they think I might Really be sick....lol
The first ex wife called me the other day and wanted to take care of me...another laugh.
The second ex wife calls my condition a " bad back " not really too concerned....
I had to move in with my parents because I am mentally and physically shot...
no worky for me anymore.
My father was at first irritated that i was just too lazy to go to work, I lost my house because the insurance that pays sick leave pay, well they just weren't very concerned either.
Now that I look like a cancer or aids patient they are concerned.
In the end sometimes people are just not very concerned.
I saw a headstone once that read " I told you I was sick "
I am really sorry your husband thinks its in your head.
let him read my post.......
I have suffered from AS as far as I can remember. Iam only 48 and I am not going to live a very long life.

it is good to meet you

thanks for offering your OT advice as needed, i'm positive that will come in handy for the rest of us

have you ever heard of LDN (low dose naltrexone)? if you search for it here and google it, you'll see that its still off label but more and more recognized for autoimmune diseases, amongst other things. i went on it when rheumy #3 just wouldn't prescribe any of those "dangerous drugs" (as he put it). it has helped my enthesitis tremendously.

i also have a GI component to my spondy. probiotics (stool sample testing showed i was lactobacillus minus) and staying away from the foods that i tested positive for (blood work showed sensitivity to the casein in milk and sensitivity to eggs (probably again, one or more of the proteins). even without overt GI issues, these things might be something else to consider. i bring it up because you mention diet. i've been tested every which way for celiac (always negative) and even tested negative to the various grains in the blood work, but i do think there was something to the dairy.

as for your husband, i'm very sorry to hear that he isn't very supportive. i can't imagine dealing with this without 100% of my husband's support. maybe if he comes here to read? maybe if he goes to doctors' appointments with you? my husband has done both of those things, but he already was supportive, that's largely why he did those things; still its a place to start. or books like "sick and tired of feeling sick and tired" or "you don't look sick", reading those might help him understand (they helped me understand when my husband was sick). sometimes people just don't understand, but if they are motivated to try, then there is hope. i do hope he is motivated to learn how to be supportive.

good to meet you; welcome

Hi Nat: I can empathize with you on hubby being supportive but not understanding. Maybe, it is too hurtful for them to see the truth or is it their personality? Glad we have one another for support. And I happy for you, you have a daughter too. How old is she?

Shari

Hi Pea: It is nice to meet you. I read a little about your situation with hubby. Are you feeling better? How is your hubby coping now? I was very down last week, with a huge AS flare and another sinus infection, felt as if I was ready to go to heaven.

Your MIL sounds just like mine. I find the less my mother in law knows about me, the better off I am. Also, my husband does not care to have a relationship with his Mom anymore, which is sad. Many times, she has tried to destroy our marriage.

Shari

Hi Shari and welcome - so sorry you had to find us, but at least your KA Family will be supportive!

Like you, I have a husband who doesn't want to deal with his now *defective* wife - so capable for so long and now I've decided to stop being the Trojan suffering in silence and he doesn't like it..... I have suggested to him that *I* don't like it either!

You might want to give the NSD another go with help from other members helping you to weed out some hidden suspects...?

The good thing about your profession is that it makes it easy to nut out some assistive solutions - the hard part is taking your own advice! Are you a Brit, an Aussie or an American or Canadian?

However I have come to learn that I am my own worst enemy and am now trying to be my best advocate but it is tiring to be a lone voice in the wilderness within a marriage, isn't it?

My kids have given me much joy over the years - now they are teenagers and it's a bit of a bumpy ride!

Can I call you Elmer? I am sorry wife number one and wife number two were unsupportive. I hate to say this but what goes around, always comes around. In terms of your father, he is clueless too! And I am so sorry you lost your home.

I loved your comment about the headstone that stated "I told you, I was sick". I'm still laughing . I'm putting that on my headstone, no lie!

I too, look like I have cancer, down to 98 pounds but a few years back I was 90 pounds when I suffered with strep for a year and then out went the tonsils.

Hope I can make your world a better place. Keep taking care of yourself and don't let the AS monster take over!

KEEP YOUR STICK ON THE ICE!! ^.^

@ 29 i feel like i will be around same place when im 48. my mommie cares!!! if no one else in the world cares usually mom does, possibly she is the only one who even has vested intrest in our helth, she gave birth to us, and as a general rule of nature,, fathers care little for adult children...