Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group just need to ramble

Hello, this is only my 2 or 3 post. First of all would like to thank everyone here at KA, you really help answer alot of my questions, even if i'm not the one asking them. I just needed so much to ramble about my feelings. Family is great and so is boyfriend, but they just don't understand the pain, the depression, oh did i mention the depression?? Since being diag. about a year ago my mind has went to hell. All i can do is look at pictures of years ago and wish that i still looked like that, my family tells me that you can hardly notice the bent posture, the not being able to bend, etc...... But everytime that i go to the store or something someone always ask me if i was in a car wreck, or if i have had my neck hurt, most of the time i am crying all the way home, because people make you feel like a freak or something in that line. Oh by the way i'm only 32 so people always say it can't be arthritis you are to young for that????? So any way started seeing a physicaiatrist( sorry about the spelling), well they put me on 60mg of Prozac a day. Was a miracle drug for about 4-5months, then started having mood swings, the urge to hurt people, even blacked out once and came to trying to run a car off the road because it was going to slow. So now am trying 10mg of Lexapro??? seems okay only been 2weeks. but my question is does any one else have any suggestions in battling depression????sorry for the ranting. You are a God send KA love tina

Hi Tina:

Thanks for your post. This is a great place for talking - people here understand what you're dealing with. It's been my experience that just letting out what's bothering you is helpful in coping with depression. You might find that building a strong support network is also a good idea. These are the people who understand when you are feeling down or are in pain etc. A good counsellor can also be a blessing. Be gentle with yourself - learning to live with a chronic disease isn't easy. It's really important to let yourself grieve for your pre-AS life and to come to terms with what you are now dealing with.

Sending some healing thoughts your way,
Cat

Hey Tina,
I feel your pain believe me.......I am also 32 yrs. old with AS and depression!!!!! I found out about 1 1/2 yrs. ago and didn't really accept it until around December.(Even got a second opinion b/c I didn't believe it) until I got to where I could hardly walk. My new doc put me on Enbrel Injections twice a week and they seem to help with a few side effects.
It's good to relate to someone even though it does suck having it. Anyway, I just wanted to let you know if there is anything I can help you with, feel free to ask!!!
Kelley:)

Hi, Tina,

I tried a few of the anti depressents as I was told my pain was just anxiety and depression.

Had a few nasty side effects from them so I quit them on the advice of a not one but several Dr.s.....Too much of a particular neuro tranmitter can be just as bad as too little. I was on a light dose of effexor and I found I was standing my ground to everyone, caused heaps of problems. Cipramil did even worse things.

Have you tried conselling? I first attended a rhemmie when I was very young, and even now at 42 I still get the stares and questions in the waiting room from the older folk there.

Conselling can help heaps and Ive found it very useful.

How is the AS? Being tired not sleeping stiff sore etc can really bring you down as well.

David

having just spent a whole night in pain, unable to sleep and having to turn every 30 minutes or so, I am pissed off today, but the sun is shining, I have lasted the night and who knows what tomorrow will bring.
It wont get better but you will learn to live with it eventually.

Janet

aka Johnti

Ramble all you want, as to your question, accept that you have AS, accept that every body elses pain is always going to be worse than your own, accept that change is necessary. I to had the same feelings as yourself, then came close to meeting my maker, mainly due to the drugs I was on, by having a heart attack.
Each day is now great I am more relaxed and realise life is too short to put up with any thing except enjoying myself. I do not try and make people understand any more about this condition, because I find that it fustrates me trying to tell people about it and believe it or not people want to here about others being sick, I am sure of that.
Some who ask, it is easier to tell them that you were hit by a bus and still waiting to go to court, they seem to accept that, that way they know that it is not contagious because half the time that is why they are asking, sounds very cynical, but it works for me, and by making a joke of it I also get a laugh which we need.
But when in doubt come back to kick AS there is always some one who needs you on this site and you can feel there pain as they write there posts, been there felt that, cried there, and government departments are the same the world over "we are there to help you when you can not help yourself, except get a job first and have plenty of money cause we do not want you the sick one to have any of it"
Jeez now you got me rambling, but I am not sorry.
rat

Hi Tina,

Welcome to KAS, sorry you are in such pain and depression.
I know just how you feel about being asked about your condition
my son Mike gets that all the time. People say well why don't you
get an operation, they have no idea what kind of pain you are
experiencing. I don't have AS but am a great supporter of you all,
because I see how my son Mike has suffered over the years with
it, he is now 42 was diagnosed at 24, is on disability and has
had both hips replaced and is now on Enbrel, which has relieved
his pain 50% . He has gotten so if people ask him if he has been
in a car wreck he sometimes says yes, they stare at him and I
get so mad and that is how I got my username, the leader of our
support group here in Phoenix said that should be my user name.
I really get riled up when people stare and ask stupid questions.

Keep yourself busy, try not to let what other people say about
your condition upset you, they just don't know unless they could
experience your pain. Think good thoughts, take walks as much
as you can, I know that is hard because Mike cannot walk very
far. Smell the roses, listen to the birds sing and listen to good
music and I don't know where you are spiritually but that keeps
me going having to watch my son suffer.

Sorry I didn't mean to ramble on so long.

Your AS Friend and Supporter,

Maxine


"Mike's Mom"

Yeah, I remember that "too young to have arthritis" nonsense. If you live long enough, though, it gets a tad more hurtful, as in, "Well, what you do expect at your age? Everyone has some arthritis."

I find exercise helps to keep the depression demons at bay, I'm on one of the new disease modifiers so generally am pretty even tempered these days but I do have a lot of mechanical damage and some days I still wake up with my back biting me. Combine that with a long distance relationship where we can only see each other every other week and some days I just feel out of sorts and grumpy. Working out helps a whole lot, when I get to feeling that way I make sure I don't miss my gym workouts, and daily swim. Taking a walk is good, both for AS and for the doldrums. Swimming, if you have access, is the best fix, though, very calming and soothing and easy on the painful joints.

Another quick fix that is no problem at all is a small piece of dark chocolate, good for the heart, good for the soul, good for the mood.

Cheryl


My guy

If you can't be kind, at least have the decency to be vague. Author Unknown

Hi Tina!

It is a tough thing to battle depression. I don't have many suggestions to offer that haven't already been suggested, but do want to express to you (and others here who are recently diagnosed) that it takes time to wrap our minds around the idea of having something that won't just get better and disappear. It takes time. 1 year is not very long and the time it takes differs for each of us. Trust you will get your mind around it, and will not spend forever asking 'why me?' As time moves along different questions tend to pop up like, 'why not me?' And then at some point many of us experience those awakening moments when we find ourselves saying, 'thank God I only have AS'.

I've realized those people who stare never go away. But what power do they really have to make us sad, that we don't give them? First, it is to heck with them; they haven't a clue what it's like to live in our shoes. Then, a change to feeling sorry that they've never had the opportunity to learn any better. Now, that would be sad. Over time, I'm left with a sense of feeling grateful for what I've had the chance to learn that some may never know.

If the pictures of your past hurt too much then perhaps try putting them away for awhile. Think of all ways to make it easier on yourself and make today more enjoyable. When you find something that works keep doing it. Meds, doc's, knowledge and supportive friends (like this great KA crowd ) will all be things to help you fight this. And trust yourself!

Take care,

mig

Hi Tina,
There are more than a handful of younger people with AS. I was 10 when I first showed symptoms and I am now (almost!) 21. Its frusterating seeing commercials for Vioxx and whatnot with 'older' people in them and seeing nobody like me. There is a poster at work (in a university nursing building) that has a picture of a little girl that says "This little old lady has arthritis."
Depression isn't uncommon. You have come to the right place for support and a place to vent. Feel free to PM me anytime.
Feel better,
Michelle

You can't always do what is comfortable. You have to do what is right.