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

Hi Tina, I wish there were some magic word I could say that would stop your pain and depression. There isn't, which is the sad reality. However, a more hopeful reality is that you have found KA, and that you are talking about your experiences. When we do that here, there's no telling how many other people have really needed to vent about the same things.

Getting that dx is a double edged sword. Now, suddenly, you have something concrete to fight ... you also have something that will be with you for the rest of your life (barring a medical miracle). It's overwhelming, man do I know that. We all do here.

First off, I would get in touch with the Arthritis Foundation and find out if they have an Arthritis Self-Management program going. I just finished taking it and it's done me a world of good. I truly wish someone has pointed me in their direction 2 years ago (I was dx'd 2.5 years ago). You'll learn coping skills and how to talk to doctors. The textbook has a great section on drugs that's been updated relatively recently. Not to mention, you'll be in a room for a couple of hours a week with people who understand.

I'm 40 by the way, have been battling the AS beast for, probably, 22 years (looking back with my 20/20 hindsight) and was only dx'd after I finally admitted to myself that there was a problem. You can imagine the contradictory messages I get from my doctor because of my age.

Me: I feel lousy and I'm so low.

Doc: It can't be easy, after all you're only 40 and you have more doctors than most people see in a lifetime. You're too young for all of this.

Me: I feel lousy and [insert symtom here] is happening.

Doc: Well, Kath, what do you expect. You are getting older.

DOH!!!

I'm on Celexa, by the way, 30mg/day. I've found it to be very helpful when it comes to my depression. I can think more clearly, don't get so overwhelmed by the problems that I can't cope. Yet, I can still feel the problems, they're still there, they just don't bury me anymore.

Anyway, I'm rambling at this point. I'll give someone else the talking stick now.

Hugs,

Kat


"I haven't failed. I've just found 10,000 ways that don't work."- Thomas Edison

Attitude is EVERYTHING.

I cannot change my fate, I can only change how I respond to it. It's not like I get my life to do over again. (well, there are a few here on the websight who will, but I'm not sure if I'm a reincarnation or not .... I would rather have people who actually know me wonder how I can do what I can. I NEVER worry about what the general public thinks if I am not walking quite normally that day, because that's not important!!!!!

As for what I actually do, I avoid medications that tend to make me depressed, which is most of the NSAIDS and prednisone and synthetic birth control pills and synthetic progesterone, which is a bad depressant for a lot of women. I eat very, very carefully and avoid most starches, I'm almost on a No Starch Diet except on weekends I treat myself to some rice because I have my gut symptoms under control now and my joints feel so much better that way . This way I don't get the roller coaster effect of bingeing on carbohydrates and then having blood sugar spikes and then blood sugar crashes and wild mood swings. Changing the diet can alter mood. I take calcium and mineral and vitamin supplements.

I also consider exercise mandatory. They did a study of treating depression with exercise and therapy vs. conventional anti depressant drugs, and found that the ones who stuck with the daily exercise did about as well as the people on drugs, long term, IF they stuck with the program. That does not surprise me. Why in the world are SO many people depressed in our society? Part of it has to be our culture, how we behave on a day to day basis, what we eat, what we do...our ancestors could not have had this wide scale depression and survived as a species. It's not like Prozac grows on trees.

I don't care if I feel great, good, or feel like sh*t, I am going to exercise daily as maintenance on my less than perfect body, because the alternative is stiffening up to the point I don't function welll anymore, and that is not acceptable to me. Yes, I get mad that I can't do what I used to, but there is still a great deal I can do...that is what we have to look at.

Hi tina ,

AS is really a difficult disease and it takes very long to come on terms with it . Many a time it surely becomes very very depressing . As for other ppl i guess it's really impossible for someone else to understand "HOW MUCH PAIN " is there with AS. But at the same time as they say "with every difficulty we get there ..are 10 opportunities that we get ".......!! I know it's very difficult to believe this statement but if we look around there must be surely something that we did get and the others did not get ....!!!

and guess what ....a few days back there was a post wich described funny things associated with AS.....!! like we always get the most comfortable seat in the house and tv remote comes free with it ........!!! and if we start laughing at the problems because of AS ....... it sometimes help!! belive me there is a post which summarises it all ..!!

well.....!!! i am sure of one thing ........that is
you will soon be filled with energy and highly motivated and take on the battle with AS and win it .........!!!

Regards
Gaurav

I know how you feel though i am not even 26 yet. I still get people telling me i can't have arthiritis and that my back is bent from merely bad posture and not bone growth and that my stiffness is from not moving enough which isn't true i dance and do some martial arts well when my body isn't burning from head to toe as it does some days now.
anyways seems like I'm rambling on myself LOL. Be thankful you are in a relationship with someone. They may not fully understand but it means they will be there....by the way you may try some buddhist teachings i know they have helped me deal with a lot of the aspects of my life...doesn't help me with how long I've been single for (almost 10 years) but it does give me perspective and helps me to accept what people are willing to understand and what they just can't fathom.....If i may suggest something try to get your boyfriend and family to check out this website. It's been a blessing for me to have done so i ahve had a few friends make a real change abouyt the way they view my really painful days Ie. when i am in so much pain i don't do anything other than grumble and groan in front of my music keyboard...AHHHHH my music is my passion and part of the reason i am still on this earth.... by the way we understand and are here to help in any way we can just remember to hang in there and say to yourself when you confront someone who doesn't wish to make a consious effort to understand that they aren't worth spit. Anyways that's enough rambling from me i think for now :P

Today we fight the fight of the ages

HELLO, AS FAMILY i want to thank each and every one of you for your comments. They were very helpful, i'm not always depressed, but mainly 98% of the time. I do have a wonderful family who loves me very much, and who hurts as much as they can for me, but they just don't understand the pain and the games your mind will play with you. I live in Kentucky so there are not any dr's, here with the slightest clue what to do for me, i'm always looking on the computer for help. Then i will tell the dr. what i found and he will just say"hum i guess that does explain that does't it" then he will appoligize and say i just have not ever delt with this disease. They are trying to get me into the University of Kentucky rhummy. So just keep your fingers crossed for me. This is a great site, come on here all the time just to read. Hate to say it but was glad that others were out there with the same problems. Thanx all if i can ever help with any answers i sure will.


love- Tina

Hi Tina,

I live in Madisonville, Kentucky. You are right about the Doctors here. I drive to Nashville once every two to three months to see Dr. Jacobi at St. Thomas. The first Dr. I had in Kentucky just gave me pain pills and told me I would get over it. That lasted for two years. Then I went to a Dr. in Nashville at Vanderbilt Hospital and was diagnosed there. My SID rate at the time was over 65, and every thing I did hurt. Shortly after that I found this site and wrote my first post. I was really depresed at the time. Sometimes I still struggle with it. I am a 6'4" or was I am now 6'1". I have bent over enough to lose 3 inches from my height. I read from here a lot and seldom do I leave a message. I just wanted to tell you not to lose hope. I did for a while and now I have accepted my condition (most of the time), and I talk about it when asked hoping that others will draw Strength from me, and in turn I am strengthand. I wish you the best, and if you ever want to talk to a fellow Kentucky ASer please email me.

Brett

Hi Tina

Welcome to AS. Don't worry about rambling here the people are great and will answer all your questions. In addition to that you will get your spirits lifted and make some great friends.

Take care
Valerie

Brett, just wanted to welcome you to KA!! I don't think I've come across you before. I have to ask about 'Slubgob'.

Hugs,

Kat


"I haven't failed. I've just found 10,000 ways that don't work."- Thomas Edison