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Joined: Sep 2012
Posts: 62
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Posts: 62
The last 6 months have been a real challenge to say the least. No they have been a real B****. I had a massive flare in Sept so I took some short term disability from work. No more had I put in the request then we found out that my dad's cancer had returned. So trying to suck it up and not let him see how much pain I was in because I felt like such a whine bag in comparison. There were lots of nights and days spent in the hospital with him because when it came back it came with a fury no one has ever seen. He passed away Oct 5 at home. To say that was awful doesn't even begin to describe it. TO watch your hero go down that fast..there are no words. I was blessed to have that time off to be with him and my family but I really didn't take care of myself then. Many nights spent sleeping in a chair of sleeping on my mom's couch so that I would only be a few steps away from him. The funeral was Oct 10 and I went back to work that Monday. I thought getting back would make it easier on my mind if I stayed busy. Well I was able to work for one month and was fired for missing an unacceptable amount of work. I don't hold any ill will for the co that I worked for because they did so much for me. But with being fired I lost my insurance and the second income in the house. SInce then I have not been able to go back to any of my doctors so the last time I have seen any of them was in the end of Sept. Many of my meds I haven't been able to afford to get since they are so expensive. My body hurts worse now than it did when all of this started. I can barely turn my neck. Sleeping for any more than a couple hours is impossible. Pretty sure my ribs are fusing because they won't expand enough to take a real deep breath. I can only walk a few feet before my feet hurt so bad I want to cry (and sometimes do). My toes on both feet won't bend anymore.

My mom paid for me to go with her to Tennessee for a couple weeks for my grandma's 93rd birthday which was a blessing. I didn't get to do a lot because everything was too difficult physically to do. When I got home I was so excited to see my husband and when I tried to kiss him he tried to duck and weave. A couple weeks later he finally opened up and said that he isn't happy anymore and he didn't want to give up but if we can't figure out how to make things better he sees divorce in our near future. I am trying to get disability (with attorney help) but that takes forever so now I think I have to find some kind of job to save my marriage. I don't think I have ever felt so sad, scared, alone and worthless.


Suffered for years before was diagnosed 9/20/12.
Fibromyalgia and PCOS. Currently on 11 different drugs plus Humira shots. Have started noticable fusing in all parts of my body.
Joined: Oct 2008
Posts: 3
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I'm so sorry to hear such a run of misfortune. To endure all of that would be difficult for anyone. Add in constant pain and it would seem almost impossible to deal with.

You said that you felt 'sad, scared, alone and worthless'. Please understand that you are not worthless. What is happening to you is not your fault. You are trying your hardest to manage an exceedingly difficult situation and condition.

I wish you the best, and hope that things start to turn around for you soon.


"Nobody realizes that some people expend tremendous energy merely to be normal" - Albert Camus
Joined: Jan 2010
Posts: 225
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Second_Degree_AS_Kicker
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M
Joined: Jan 2010
Posts: 225
I am so sorry for your loss and your suffering. If you can't afford your meds why not give the NSD a try? You could be surprised at how much your pains could decrease. I hope things will get better with your husband. It must be pretty hard on our loved ones too I'm sure. He might come around once he's had some time to get used to this situation.
Keep strong, all the best to you!

Joined: Mar 2005
Posts: 647
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Master_Sergeant_AS_Kicker
Joined: Mar 2005
Posts: 647
Can your attorney not go after the company that fired you? If you signed anything, can you claim it was under duress because of a death in family? If you have documented medical history with diagnosis, and dr appointments, there is reason to seek compensation from this company that fired you. Did they try giving you modified working conditions, for instance?
The company has insurance so don't feel bad for them.


Sometimes I think my body is an inflammation nation.

AS for 20 years
HLAb27+, i think there was talk a negative result at later date, but never confirmed.
Have been on many different anti- inflammatory drugs (naproxen to arthrotec to vimovo). Now off all prescription meds except occasional advil or tylenol.
Don't underestimate the power of icing (I bought the biggest ice pack i could find and it is good at numbing pain).
Aaron
Joined: Mar 2002
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Hello there,

You have definitely been through a lot recently, hope it turns around for you.

My father passed away of complications from cancer over 4 years ago now, he was my inspiration in battling AS day in and day out as he lived with it since he was mid 20īs as well like me.

When I had to come off of medications from time to time, I always felt worse as well than I had before. In my case, I think this was from years of drinking alcohol and taking NSAIDs that are both destructive for intestines. I also had hard times sleeping more than 2 hours, sitting or standing in place even. Walking up stairs I had to do slowly and sometimes on my knees.

As for your husband, will need to talk this out. Not easy, especially for men. Some understand.. some never will and some want things like they have always been.

Regarding the pain, hopefully find something that helps. There is a lot of information here on what others do for their pain. Hopefully you find something that works for you.

Best to you,

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
Joined: Nov 2002
Posts: 6,925
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Addicted_to_AS_Kickin
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Addicted_to_AS_Kickin
Joined: Nov 2002
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I am so sorry for the huge loss of your father. I am also sorry for the other losses; job, insurance, health care and stability in your marriage. You are dealing with so many losses right now. Can you go and talk to someone? You have a lot to grieve.

I will be thinking of you.

Soft Hugs.




Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

Joined: Sep 2012
Posts: 62
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Joined: Sep 2012
Posts: 62
Thanks everyone for the encouraging words. I was having a really rough feeling sorry for myself day and I know this is the one place I can do that and not get "the look". Love you all for understanding.


Suffered for years before was diagnosed 9/20/12.
Fibromyalgia and PCOS. Currently on 11 different drugs plus Humira shots. Have started noticable fusing in all parts of my body.
Joined: Jan 2008
Posts: 21,346
Likes: 1
Very_Addicted_to_AS_Kickin
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Gentle hugs and thinking of you heart hugss heart



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)
Joined: Apr 2013
Posts: 278
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Third_Degree_AS_Kicker
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P
Joined: Apr 2013
Posts: 278
Hey, I hope things are working out better for you.
As a fellow Missourian, I know how awful this winter has been. Just the weather alone could cause all kinds of physical and emotional reactions with it being hot and then icing over. then with the added stress of a father dying and a husband at the end of his tether you have my deepest condolences.


Be kind, for everyone you meet is fighting a hard battle.
Plato
Joined: Aug 2013
Posts: 215
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Second_Degree_AS_Kicker
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Joined: Aug 2013
Posts: 215
I'm sorry to hear about all of this. When it rains it pours. I wish you the best of luck from here on out and I hope you can persevere through all of this and be better for it.

Last edited by Smiletoday; 04/11/14 05:09 AM.

Everything is okay. Trust yourself, and do not live from a place of fear.

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