Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Starting Humira and I am scared

Hello! These meds have dramatically improved the quality of life for many KA members. There are additional even more promising meds in both research and recently approved. Likewise, there are AS patients who fear the potential side effects of these meds therefore choose not to take them which is understandably a difficult decision. I think one needs to make a conscious decision that yes, you may be choosing QUALITY of life over QUANTITY of life and if you choose QUALITY--go at life with a gusto! Appreciate everything, and do as much as you can! This New Year make a list of all the things you want to do, places you want to see, and goals you want to reach. Refresh that list continually as you adjust to limitations AS may influence.

There's still plenty to do and see on earth even with limitations. Focus on getting your pain and inflammation under control by whatever combination of solutions others have used here (meds, diet, exercise, pain management, meditation, spirituality, etc.). Best wishes to you and make 2015 the year you tame the Ankylosaurus!

hola

I really hope you are finding those things to live for.

I have been doing this most of my life. Started with what they thought was rheumatic fevers during the summers of my childhood with weird rashes, fevers, aches and pains. Finally was diagnosed with RA as a child. That was followed by Fibro in my 20's and by the time I was 30, they added MS. In a few years, they dropped the MS and I had a definite diagnosis through UCLA Med Center of Systemic Lupus and Ankylosing Spondylitis. The Lupus has affected all most every part of my body at one time or another and several parts at once at times. Between the RA and AS, they just fight to see which can hand out the most misery.

I have had steroids most of my life and almost every Biologic.
I cannot take any of them any more so we are just going for quality of life.

I had heart surgery 4 years ago that didn't heal because of so many steroids. I had spine surgery a year or two ago that didn't heal for the same reason. I have lots of plates, wires and screws in my body.

I need a really big surgery with plates and rods, etc. on both the front and back of my spine plus another surgery for a double scoliosis where my spine is collapsing. The surgeons say that it would take all day and then it would never help my pain so we aren't going there. Besides it probably wouldn't heal.

I love all things outdoors. I am struggling to garden any more. I have seen this coming so I have been planting perennials, rose bushes, flowering shrubs and things that reseed. I hire a teen across the street to pull weeds. Helps me and gives him a quarter in his pocket.

I love being in church and when I can't I get comfortable for live streaming.

I enjoy our children and grandchildren so much and now we have a great grandson to dote on. Thus, the "cookie corner" I have a puzzle on the dining table and oil paints on the kitchen bar. There are books all over the house along with phones, I-pads, computers and any other way I can stay in touch with people.

I use a "highly decorated" walking cane. My grand daughters re-decorated for me over the holidays. I have a walker that is doing me a lot of good right now and I also have a wheel chair. Just use what you have to when you have to.

Standing to cook is my hardest thing. Hubby and I worked together today and made a huge pan of enchiladas. I can scoot around sitting on the walker pretty fast.

Oh, as to how long I have been doing this. I am 71 1/2 I need everyone cheering me on that I can get.

My inflammation has NOT gotten better through the years but you may well be in the generation that sees a cure. I hope so. Even if you don't, there is so much good in this life.
You were so good for me tonight when I read you post. You can help so many people.

Please don't give up! Come back soon. Let me know how you are.

Blessings.

Despite the difficult times and hard decisions you had to make I think looking at the big picture your body is utterly amazing being able to fight off the faulty genes and not get cancer from the constant inflamation.

So there are definately good genes in you

I've been living with asthma for 30 years now.

It was so severe when I was a kid that I was in hospital year-round. Doctors called my parents to the hospital one day and told them "there is no hope for this boy he can't live much longer with this condition". I heard them say this, I was in the corridor.

Relatives and classmates started coming in to say goodbye, everyone was basically getting ready for my funeral.

Slowly, I got better and by age 18 I was enjoying sports no different from other boys, even had more stamina than some of the other guys I used to compete with.

Life was good!

I had excellent grades in university and my parents were happy and proud.

But happiness is so transient.

After beating asthma I now get AS about ten years later and I am back in hospital.



Sad story at least I had ten "normal" years disease free.

So, what are you cooking today do you cook for the entire family?

My grandmother is 86, she has severe spinal damage her back is bent in a horrific position but not from AS.

She developed kyphosis after a fall in which she suffered broken ribs and concussion.

Years after she still complains of occassional back pain.

Before my AS I was often asking myself how is this possible, poor woman how can her back deform so much and give her so much pain.

Now I know.

Yet, like you she is still happy and doesn't want to go to grave. She is social, does her own shopping and goes out with friends when the weather is good. :))

How was the enchilada meal, we don't have this here is it tasty :))

Hi I am a 20 year old female student with AS. I was diagnosed 1 and a half years ago now. I am not on a biologic yet. I take sulfasalazene and methotrexate.

I can tell you three things will make a world of difference for you diet, exercise and attitude.

YEP THIS SUCKS. I hurt every single day. Started pain when I was 13.
The meds help but I still hurt. Sleep is the worst. I would pay a million dollars for one solid night of sleep. But, If I get a decent nights sleep then I pay for it with such stiffness in morning that I have to will myself out of bed. But I do get up. And I make myself pretty and go to class. I had to get past feeling sorry for myself . It was amazing once I did those around me became much more empathetic. But I only give myself three complaints a day. So I save these for someone who will really care. None of my classmates know. Others will not understand. I only get frustrated trying to explain. Get your head straight. Being depressed will make you hurt more. Get meds or mood supplements if you need to.

For exercise get in the water. I read here that swimming helps and omg it really does. At first all I could do was go in deep water and tred water for five minutes now I can do laps. I try to swim three times a week. I also do yoga. Just at home with a video. I cannot do it all but I do what I can. When someone posted to exerc7se my first reaction was are you nuts I can barely move. (I was still in my poor me phase.) But I knew I could not go on like I was so I tried. Exercise is huge for feeling better. Also releases feel good hormones in your brain.

You dont haveve to give up food altogether. You have seen good results with a fast so proof positive diet works. So try diet again but don't starve yourself. I am not real strict with my diet like some people here but I do find it help especially when I get bad. Try a simple diet. Make adjustments where needed. I eat yogert and fruit for breakfast. I think cherries work well. I also make smoothies with the fruit and yogert. For lunch I eat yogert, a cheese stick, and an apple. I have dried fruit or cut up vegetables for a snack. For dinner I have a salad with grilled chicken, fish or pork. I avoid bread, potatoes, pasta and sugar. Just keep it simple.

I do take crill oil but I do not overdose on it. I also take probiatics. My mom gets them from pharmacy windowvthey have to be refrigerated. I take a multivitamin and extra vitamin D and B. I take a cherry supplement.

Read and research use trial and error to find things that work. But when you try something don't go overboard. If a little helps more will be better is not always the case. Like exercise take it slow. Much better plan thanwaiting to die.

Hi Katy, amazing post what is your star sign you sound even more determined to soldier on than Possi :-)

I do at least half the things you do - yogurt and fruit for breakfast, also lots of water during the day.

No junk food at all, I prepare everything at home myself.

I totally gave up fizzy drinks and alcohol two years ago and yes this had made a big difference.

Morning stiffness and pain is the worst for me too.

Have you tried OMEGA 3?

For me it is as poweful as a daily NSAID however it started lowering my heart rate so I had to stop

Any other supplements you recommend?

I still don't understand why so many of you take probiotics ???

Have you considered starting a TNF-inhibitor.

I hope you have a mild disease and it subsides over time.

I really enjoyed you post. I am very thankful for your ten good years. I happen to believe you are going to have many more good years. You just have to come to terms with the "new" you.

I loved my career dearly. I had no plans to ever retire. I started getting more and more fatigued and my pain was getting worse and worse. I was having trouble with vertigo. I was up and had my walk in before 6:00 every morning and was in my office shortly after 7:00 every day. I liked to get there before every one else and get my day lined out. I kept pushing, working late. If anyone in my office had to work late, I stayed until they finished. I worked days when no one else worked and I got more and more tired. I found myself shutting my office door and laying down with my feet against the door so no one could come in and napping. I didn't take a day of vacation for 3 years. I wonder if we tend to have Type A personalities. I know that I was driven to do the best I could. I think I drove myself and got so exhausted that my body just cratered. I was in the office on Friday and by Sunday I was in the hospital. It was 9 months before I was able to even go have a look at my office. I was 43 when I went on disability and I had 27 years of Social Security income. I worked before I was old enough so I had worked more than 27 years out of 43. I worked all the time I was in High School and College. I think I just exhausted myself.

My doctor kept telling me that this life would become the new norm. I would tell him that there was no way this would be normal. Guess what! It did and it really didn't take too long.
For a few years, we did the "Remember whens" and the "what ifs"
but those times became fewer and further apart. Our life now is our norm. Normal changes and it is good. It is just different.

I believe you are going to have many more good years. Different but very good! Your Grandmother has shown you that hasn't she?


I wish I could make you a big pan of enchiladas. Yes, we think they are very good. I know they aren't as good as some of my Hispanic friends enchiladas but we enjoy them and it is something I can make a lot and have more than once or share with a neighbor. Very simple, just make you enchilada sauce (or you can buy canned). Cook your ground beef, seasoned how you like it. Soften the tortillas(corn or flour) in the sauce and put your cooked, drained meat on it with some grated cheese. Here, you can do what you want; add beans, corn, onions, whatever. I just made them plain this time. Roll them up with the meat and cheese in them and put them in your pan. When the pan is full of enchiladas, pour more sauce over them and sprinkle with more cheese. Put in a 350 degree oven and bake until they are bubbly.
You can make them with just veggies; corn and beans, onions, etc.
Just whatever you like. This time I had shredded Romaine lettuce, chopped tomatoes and onions that we put on top and some sour cream for those who like it. Try them. We like just these but when we are having people over, we also have beans and rice.

Tell your Grandmother hello and she is an inspiration to me that she is still going.

I am so thrilled that you sound happy. You are going to come out on top of this thing.

Have a good weekend. Remember to always take time for God and for you and your family. Enjoy the good things. Work is not all there is to life. I found out the hard way.

Blessings.

Oh Katie is so right about water exercise. It has kept me going through the years. I take probiotics. It helps keep the good bacteria in your intestinal tract. I have severe kidney problems from Lupus and my Urologist recommends them to help overcome the bad bacteria in my kidneys. I take Vitamin D. Most of us are low on D. I take a B Complex, heavy on B-12 because mine is very low. I also take a good multi-vitamin.

I agree to educate yourself. Read; just be sure it isn't old information. Make your own decisions regarding your treatment, diet and exercise. It is your body!

Rest well tonight.

You are like our KickAS mommy here Possi, always good advice and trying to cheer us up. :-) And a enchilada recipe to boot

Absolutely no desire for food today just an apple

Work and family is what keeps us all going basically, I don't think it's fair what happened in your case you sound like a real passionate person about lot of things and that makes it even harder when disease strikes.

I cried a lot yesterday and collapsed on the floor, I miss my dad.

He died in August 2014.

Mom was admitted to a psychiatric intensive care unit after the funeral.

When I came back home to see our empty house my knees bent like jelly and I had no strenght to go through the front door and stayed outside for a few minutes trying not to break down.

I don't wish what I have been through to anyone.

Dmx07,
Hang in there man, things will get better. I am at a loss of words to be honest, just letting you know we all care.