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

Hello new friends!
A couple of days ago, I posted looking for others who have had gallbladder problems and/or have had surgery while taking an immuno suppresant (I take Humira after Enbrel didn't work for me). A couple people here asked me to keep everyone updated, so here goes.
I saw the surgeon yesterday, and he wants to schedule me for some sort of a specialized MRI, where they will inject a radioactive dye or something in me to see how the gallbladder and biliary duct (syphincter )are functioning. He "fears" that what I have is fairly rare (why not?! Everything else I have had is!) and that I will have to go to a larger city with a University Medical Center to take care of this. When the nurse took my vitals, my temp was 101, which of course alarmed me a little since I take the Humira (just had a shot the day before) and I have been nauseous with a lot of pain and a tight or swollen feeling in my right side, where the liver and gallbladder are.
I have to say, I really don't want to do this!!! The AS, fibromyalgia, spinal stenosis and disc problems are enough!!! I am still doing everything my family expects...laundry, cooking, baking, cleaning, etc. even though I am supposed to be on bed rest (but we all know that isn't possible with the AS). I am frustrated, exhausted and sick of feeling sick! My family (husband mostly, and one son who is 19 & works full time and goes to college too with a full social life) doesn't help me out, but I think I am going to have to MAKE myself stop doing everything for everybody and let them take care of their dam selves! But I love taking care of and spoiling the ones I love...and I feel guilty if I don't do everything for them. I have to say, my husband gets attitude (rolls eyes and sighs) if I ask him to anything for me, even get me some water to drink when I HAVE to lay down for a bit...I haven't slept through the night in weeks and last night I was sleeping really good for once, and he woke me up by rapping me on the ribcage because I was snoring. Most nights I leave the bedroom and go to the couch because of HIS snoring (mostly due to alcohol) but he roughly wakes me if I start snoring (I don't drink alcohol; if I snore it's because I am exhausted). I feel like everything I do for him is never enough, and now he won't let me sleep either. He constantly needs my attention (like a little kid if I am on the phone)doesn't clean up his own messes, and generally makes my life more difficult than it already is. Yes, I have talked to him about it. After he gets over being mad because I am "bitching", he changes for the better for a couple days or hours but it always comes back to him, him, HIM. I am disabled and can't work (for pay ) so he is the sole breadwinner now. I also do all the household finances and am having a really hard time making it on just his salary...but we keep having problems with the bank because he just refuses to enter his own spending/receipts in the checkbook ledger! So I never know how much money we really have. That is stressful! On top of everything else...I have just about had it. I do my best to be happy with my "here & now" and am a very laid back, cheerful person but it's getting harder and harder to keep smilin' when I feel like bopping someone alongside their thick head!!! Sorry my gallbladder update turned into a real complaint (for lack of the word that is meant) session, I guess I just needed to go off and be heard. I don't really have friends to talk to where I live, as we are fairly new in this little town and I don't get out a whole lot with the exception of volunteering at an outreach that assists the poor, the addicted, the sick, and people just out of prison. I haven't been well enough to even help out there in the last 3 weeks or so...and feel guilty about that too.

OK I am going to STOP...I keep going off! Thank you for "listening"...it helps to get this stuff out.
How can I make my husband (most of all) stop being so selfish and help me? I am at the end of my rope but I don't have anywhere else to go.

Jenn

Jenn,

I'll come knock your husband upside his head if you'd like! I always wished anyone who complains about what you go through could walk a day in my shoes. I'm lucky, my husband is good and understands when i'm in pain, I can't do anything and he does help me out...a lot.
I was talking to a co-worker today and she said she wished her husband could have one months worth of menstrual cramps and bleeding...so he would understand it's not fun going through that crap...every stinking month. I think this is the same for people who don't have AS and expect too much from us....
I hope you find some help sooner rather than later. And as for the MRI. I've never had that done and can't help you there...I'm sorry!

Sarah

Now Sarah the boxer
is vicious and cruel
she knocks everybody about
with huge fists a whirling
lips twisted and snarling
when she visits it's best to be out.....

Ineptwill, how would you suggest dealing with my husband? We of course are not serious about resorting to physical violence...but I can't take much more emotional violence.

oh cripes, I hope my rhyme isn't inappropriate or offensive..........I shall remove it at once........well, dealing with your husband requires me to be serious which I'm not very good at being, however, I shall try....

Well first off, I only have AS, so can offer no comfort on the other ailments you mention. AS though, well I am an expert at that. The first thing to recognise, as it seems you have according to your post, is that you are stuck with it, it isn't going to go away, there is no cure, it will always hurt, usually a lot, and often a darned sight more than a lot. No escape then, other than the escape you create for yourself with bloody minded refusal to allow this bit of an illness to screw up your life.

Other facts, well people are self interested, they don't want to hear about you and your problems; they would prefer it if you actually kept quiet and listened to theirs... Pain, what is pain? Is your pain the same as mine? Pain is subjective, pain is personal, thus it is unreasonable to expect others to understand your pain. To them, you have bachache!......

"ooooh why is she always moaning, a bit of bachache, what's the matter with her"
These are realities, leaving only you to bring positives out of your illness...........griping on here is a good method, most folks here understand a little better, that is not to say however that as soon as you have mentioned your hip pain, that they won't dive in and tell you how much worse than your's, their hip pain is, thus, sympathy isn't an answer.


Husband problems, well I am no marriage expert having tried it 13 times myself and messed it up, separate room, denial of standard expectations, a palpable demonstration of the relities of your disease to you, make them understand, although they won't want to!

MONEY..! I have none so cannot help there either, but ...keep banging away, and when you are accused of bitching, say yes I bloody well am and will continue to do so until you actually listen to me. And then the guaranteed success bit..................




WHEEL IN SARAH WITH THE GLOVES.....


Sorry said I cant be serious and all this waffle is of no use...my best advice

smile and enjoy something each day, being unhappy is easy, make an effort onyour behalf to be happier and be slightly selfish each day.


Ineptwill
an insnsitive type
writes rhymes and chatters all day
but hes quite alright really
its that his brain is merely
constructed mainly of Hay

Ineptwill - Being slightly selfish each day is excellent advice! I think that no matter how nice or good people are, they are human (usually), and are often directed by the selfishness and associated frailties of that (unattractive but necessary) self-interest.

AZJenn, it sometimes takes a big whollop on the head for people to "get" what you're dealing with and how they can help you deal with it. A moment of sober clarity on their part. If people don't want to understand, it is much more difficult. Feeling guilty will not help you, either, which is where being a little selfish can be very healthy.

Good luck. We'll be thinking of you.

Here, here Molly, you said in a few words what I wanted to say but took 4 pages to do.............arghhhhhhhh......well was gonna summon up a rhyme but perhaps there have been too many already.........

Rhymes are always appreciated!

There was a man named Ineptwill
He could rhyme words with great skill
His postings, quite funny,
Have outlooks, quite sunny.
Perhaps I will buy a new drill.

Sorry, my attention wandered at the end there. What was I saying?

Yes, yes I agree, I have lost count of the amount of times that I have dashed off for a new drill, making holes in new coffee tabls, the sofa and the bedhead I think is such a rewarding occupation. Occasionally I will take the drill to the television in an attempt to find out if there is anything of reall substance that may dribble from my 3/16's drill hole.........none has appeared yet however.

Errr I seem to have lost my way, I was just off to swim the channel but now, I've lost my threard.......head......errr....thread.yes that was it..

I am new to this forum, however I post many more replies trying to help others or give sympathy (we all need it, I don't care what anyone says) than I post of my own problems. Something I have noticed since joining this forum, is that you are correct Ineptwill, that people do not want to hear of others' complaints...this is extremely sad and disappointing, in that the very NAME of this organization stands for Kindness, Information, Compassion and Knowledge. I understand that many have been here for months and even years, and that they know each other and they now have other things to talk about other than their illnesses and complaints...BUT (and it's a BIG one) the very reason that people come here as a new member is usually because they need the SUPPORT, information and a caring ear or shoulder to cry on from others who can relate to their position. It is too bad that it seems more than a few people here have "forgotten where they came from", in that once upon a time they themselves probably started out on this forum with complaints of some sort, and hoping for a bit of sympathy for what is major life stuff. There is nothing wrong with someone wanting sympathy; I even looked up the definition.

sym·pa·thy (smp-th)
n. pl. sym·pa·thies
1.
a. A relationship or an affinity between people or things in which whatever affects one correspondingly affects the other.
b. Mutual understanding or affection arising from this relationship or affinity.
2.
a. The act or power of sharing the feelings of another.
b. A feeling or an expression of pity or sorrow for the distress of another; compassion or commiseration.

We all know that AS is very difficult to live and deal with. I think we need to remember what it was like for us when we were first diagnosed, how we felt when we had our first really bad flare up, and how alone we may have felt before we learned just how impossible it is for others who have not experienced AS, to understand or even help us out.

Another thing I think is important to remember is that before we really "know" each other, it isn't easy to distinguish other people's humor from sarcasm, impatience or even all out cold-heartedness. If we don't know each other, it's hard to tell whether someone is kidding around, or what is their sense of humor.
I have seen others' postings that consist of long, detailed descriptions of their pain and/or bad days...and have been so discouraged to see that there have been (for example) 36 viewing of the post but only 3 replies. Do any of us DESERVE to be ignored, passed over, or judged as "just another one who complains"??? I think not! Every single person here deserves a chance, our attention, and the same treatment that we would hope to get for ourselves.
I will go as far as to say that anyone who discards another's attempt to reach out and be heard or understood, as "just" a cry for attention or sympathy, needs to rethink themselves and put themselves in the other person's shoes even if they have already been there and gotten through it.
Let's try to uphold the very definition of this organization's name!