Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group "The surgeon said..." & associated rantings

Dear Jenn,

Unfortunately the typed word can be too easily misinterpreted sometimes I agree, and I hope this isn't one of those times. It is especially easy perhaps to miss someone's real meaning when we're in loads of pain, and I hope we are all able to see the good intentions at the heart of most replies. Some may not even realise how new to the group you are. I am positive that no-one in here considers you as 'just a complainer' or could be unsympathetic. I do believe it is true that many folks we'll meet in life, those who have never known chronic illness, won't be as sympathetic or able to understand as we may desperately need them to be at times, and that I think was the true intended point of previous words.

As I suggested earlier, I really hope you will please give this place a little more time and trust that you too will find all the warmth and support that you seek and deserve. And I hope that some will be inspired by your post to read the blip on the side and try to help all the newer members however they can. The number of views can really be a bit deceiving and more often than not don't reflect how many individuals have had a chance to read and respond. Some folks (like me) will view the thread again to read each reply anew so not as many may have had a chance to reply to your post as you might imagine. Not yet anyway but I have confidence they will soon (and I pray this won't stray folks away from responding to your initial post, as I have just done. )


More than anything, I am so sorry to read that the surgeon fears you may have another rare condition with your gallbladder to deal with. I hope the MRI will help them figure out what is going on and help with whatever treatment may follow. Oh and I really hope it turns out to be completely unrelated to Humira and that you'll be able to continue with whatever treatments are helping you cope. AS is enough trouble without more!

You really do need to pace yourself when living with chronic pain and can't expect yourself to be all things to all people all of the time. I sort of had to learn that fact the hard way. I try to do the most I can for others whenever I'm feeling well enough... and there needs to be a balance. I also try to 'plant my own garden' and find ways to enjoy everyday and smile. (Reading Alan's posts has helped me immeasurably!)

For anyone who may not have read this yet, the following link was written by someone who suffers Lupus. I think it has good advice and might be worth passing to friends and family members to read, in the hope it might just help them to understand a little bit more. Personally, I was never able to find a way to communicate what was going on with me and the terrible state of my health, not well enough to gain the support of my ex-husband... but that was a lifetime ago now and I have grown so much since then. Some may never 'get it', yet there are some people that are hugely supportive! ButYouDontLookSick.com ~ The Spoon Theory

It's a lovely thing you're doing Jenn, by volunteering to help others who need a lift. Perhaps you'll be able to get back to this, but putting yourself first to focus on restoring your health as best as can be, really needs to come first. You sound like you are near a breaking point. It is okay to look after YOU and you should not feel guilty for doing so, or for asking others to help you out for a change.

And thank you for asking here.
I'll be hoping to hear that the university medical centre takes good care of you!
mig

Hi Jenn, welcome

My gallbladder has been removed for many years now.

Three years ago now I had a CAT Scan of my biliary ducts, with radioactive dye. It seem to warm causing you feel like your going to pee . As the dye went in the scan was over. No stones in the bile duct.

I have a liver disease called NASH (non-alcohol fatty liver disease with inflamation). (I don't drink) My Gastro now thinks it has something to deal with possible Celiac, disease, which I am having a biopsy for September 4th.

Many health issues get me down, my KickAS family, have helped me get over some severe depression, which I can never have medication for, to help me deal with it.

My sister once said, "with all your health issues, you should wish you were dead", that hurt. A month ago I talked with the same sister, she seem so much more sympathetic. She watched as a 10 year boy die, no one new he was even sick. She also said your would not be on disability, unless you were really sick. People take time learn about how to deal with their love ones illness. I learnt I couldn't push my sister. I know now she understands.

Jenn, I feel your need for comfort, and love from others who understand the pain your going through. I wasn't getting it from my biological family. My kickAS family, understand and have been here, when all I can do was complain. I so love them.

Jenn, I so know how you feel. PM me if you would like to talk.

Hugs

Gerri

You guys are hilarious and brought giggles to one who hasn't smiled all day...thanks.
I appreciate each and every one of you, and pray you sleep the best you have slept in months, and feel better than you have felt in years!

hi jenn,

for me, it is my husband, that is pretty much the only one who understands (besides people here) but i've dealt with health problems for 15 years and found this place this year. so if i hadn't had my husband, i really don't know how i would have gotten by. that's why it breaks my heart to hear about your husband.

i really think you should consider marriage counseling. i know of instances where it has really helped. it sounds like money is really tight right now, but if you can swing it, that might help him to see how he is treating you. i have a friend with manic depression. for the first years of her marriage, she was the caretaker, and both she and her husband were very comfortable with that role. then she got sick, and he didn't know how to take care of her. so she left him. he was heartbroken, but that is what she needed to do. i'm not suggesting that at all, but that's why i think the counseling would be a good option.

i think my husband is so understanding because he was the one that was sick in the first years of our marriage, then we both were, now its me. he has very bad reflux and they have had to repair his esophogus several times, but now it is under control with prilosec, and i think that's why he feels better. but he was sick enough that he changed his life goals (career-wise) because of how he felt. and i didn't even know that until recently, when he told me i might need to do the same.

when he was sick, before i got sick, i read a book that helped me understand what he was going through. then shortly after that i got sick and it helped me understand what i was going through too. i recommend it highly:

sick and tire of feeling sick and tired; living with invisible chronic illness
by paul donoghue and mary siegel.

and please please stop feeling guilty. you have nothing to feel guilty about. i grew up with a mother that piled on the guilt and didn't realize how guilty i felt about everything til i left the house. fortunately, i was able to unlearn the guilt before i got sick. you need to take care of you, regardless of what others around you think. my stepfather used to act so helpless if my mother said she'd be away; well, she ignored him, and guess what? he didn't starve, he learned how to microwave buritos and stuff like that.

for me, its learning to not bend over backwards for the students at work. for the first few years here, i was a lot better, but since march, i've been pretty bad, and i had to start taking care of me first. some of my research students did not (and still don't) handle it very well; they are used to me accommadating them, but i just can't right now. so, i let 2 go and the other was given a list of rules and if she can't abide by them, she's gone. but of course, these people aren't family. i'm only sharing this example to say that i understand and i think a lot of us put others first and have to learn to put ourselves first.

also, i'm not sure by your second post, if you misunderstood alan, but what i think he was saying (and i may be wrong here) is that whether we like it or not, a lot of people are truly unsympathetic and don't have a clue about empathy. and others may try to be empathetic, but fall short of the mark. i think he was just trying to point out the realities of life.

my brother told me, "you've used up all of your sympathy." ouch, that hurt.

my sister thinks, "well, her husband with melanoma's goes about his life. she doesn't understand why her friend with fibromyalgia doesn't just get out of bed and do stuff. she must be lazy." i've tried to educate her. i can only imagine what she must think about me, but at least she's too polite to tell me.

and my mother has said some blunt things to me. the latest ended with her telling me to call her when i was feeling better. that was about a month ago. i'm taking her literally this time. maybe she'll get it. maybe she won't.

so, it may not be my husband, but i've had loved ones who have been less than understanding, but i think it would hurt more if it were my husband,
so i think i can understand a little how you feel.

sue

Thanks Sue, for your words of wisdom and comfort. I do want to say that I understood what Alan (I am guessing that is "ineptwill"s real name) was saying; my post regarding "I think this needs to be said" came from a week's worth of observing and experience. I get it.
I know my husband doesn't know how to handle his own feelings about not being able to "fix" me, and he says it kills him to see me in pain. But the selfishness has been since way before my illness got in my face, and I can't change him. I have a really hard time putting myself first; I was an abused child and have put myself in counseling several times to deal with the past but there are some things that just stick with me. I took my first "vacation' in years and went to visit my mom and sister in Chicago back in July. I was gone for 2 weeks, and within a day my pain level reduced by more than half! My hubby has his own demons and baggage from his past and he is pretty much emotionally retarded
I love the man, but I just can't be his mommy any more. I make full breakfasts and lunches for him every day, and do anything and everything but wipe his behind for him. My psychiatrist tells me I need to set boundaries and stick to them. I am working on it...but I just can't deal with the bad attitude or silent treatment if I am not fully accommodating all the time. That is my problem, and I know it.
Alright folks, I'm signing out for the night. Love to all.
Jenn

Hi, Jenn:

I read your initial post and a few replies, but I did not respond. Regret that I do not respond to very many, but that does not mean that I have not taken the time to read and ...*THINK*... of some reply.

SOMETIMES (and many can attest to this) it is better that I do not reply.

In YOUR case, a truly thoughtful and kind reply is certainly well-deserved, however many of us use humor or even, in some cases, "humour" as a way to keep our sanity, faced with the many evil faces of AS and all. This medium does not convey nuances of speech or even give us any visual clues--outside of those emoticons. I hope that anything you have taken offense to will not taint your experiences here, but I have sort of been involved in exchanges that escalated and realize several things--that we really do care about each other here, and we are as often replying to ourselves (and attitudes or emotions we have held) as to some person we don't know enough to get very personal with--certainly not enough to purposefully offend.

Since you are a person dedicating a portion of your time to others, outside of your immediate family, I wanted to mull over your issues a little more before responding.

There are some good answers, but it will require work on YOUR part to make the changes that will trigger desired changes in those around you.

AS is a trap from which you can extricate yourself--but you need cooperation from those who are now enabling your AS to begin the fight along with you. Before AS robs you of more than it has, practice by being more Jenn and less AS. Give no more time to this disease; eliminate it from your life. It can be done, and should be done immediately. Mark on your calendar which day you want AS out of your life--this is not only possible, but imperative! THAT is the meaning of kicking AS--reclaiming your life!

Regards,
John

Hi DragonSlayer - I always appreciate your thoughtful posts!

You are right about humor (or humour!). I wouldn't be able to make it some days without joking (pretty much all the time). Sometimes it's the only way to get through very painful things. The night my mother died, while we waited for the funeral home to pick her up, I sat with my uncle, aunt, and sister and we talked and cried and joked a LOT. To the outside observer, it might seemed callous or at least weird that we were laughing at all, but she would have appreciated it.

This is a great forum, and those I've "met" have been warm and caring folks with are themselves shouldering a lot. One thing I love about this place is that there seems to be very little judging of others -- an understanding that each person's burden is the heaviest. Thank you all for bringing that to the table.

~Moll

Hi Jenn,

Sorry to hear regarding your family at home, this is a topic that comes up repeatedly. Unforunately there is no easy answer and no one answer. Everyone is different... your husband and son are no exception, so we can offer general advice, but you know your family much better than we do.

Some recommendations that have been passed on before...
1. Communicate - communication is key in any relatioship, especially with loved ones.
2. Have your husband/son read some of the posts here at Kickas
3. Teach your family about AS, there is information here and at other websites.
4. Have husband go with you to the doctor so he is involved and hears what the doctor has to say for himself.

I am not saying any of this well work, much of the advice will depend on your family and how receptive they are to these recommendations.

Of course, you can always come here to "vent" as most will call it... sometimes letting off steam if it is only here helps as well.

Best to you,

Tim

P.S. not sure I shared this with you earlier... I lived in Chandler, AZ (metro Phoenix) for 5 years... not sure how close that is to you.

Hi AZ!
I have a great and wonderful husband, but I must say his understanding of my AS took a step up after 1. He went to a couple of Doc appts with me. 2. I printed off the internet some material about my condition & med's ( he then sees the risk I'm willing to take by taking poison pills everyday to just do the dishes. 3. It sounds stupid but we watch TV shows like Medical mystery, mystery diognosis etc. they have a lot of shows with our kinds of conditions. I really think people don't have a clear understanding of the seriousness of this disease and we know some men aren't walking encyclopedias, it sounds stupid but try to educate him, it can't hurt. Good luck.

Apple

Hey I forgot, If money is tight because you can no longer work file for Social Security disability, there are a lot of attornys to help with that give one a call.

Apple