I am a mother and wife first, and a patient with Ankylosing Spondylitis second. Even though I have AS I am so blessed. The Lord has given me so many wonderful things in my life, so the positive definitely outweighs the negative! I have a wonderful husband, who is also my soul-mate and best friend of 13 years (we got married at 19!), and two gorgeous kids. I lost my mother to breast cancer in 2000, when she was 45. I miss her so much, and to add to the loss, both my husband’s parents passed away recently as well. It is hard raising two kids, while having a disability, and not having much family support. I am blessed to have my father here with us, and he is a wonderful grandfather to my kids. After I was diagnosed with Ankylosing Spondylitis I felt like I had finally found my purpose on Earth…I was meant to be an AS Activist, and I take that very seriously. I hope I can not only teach the world what living with AS is about, but I hope I can help others like me deal with the toll it takes on not only our bodies, but our souls. So with this blog, I hope you can get to know me, my goals, and more about AS. Thanks for reading, and please feel free to leave feedback, good or bad! My backbone is fused, and I am not afraid to use it!
Thanks for working so hard to raise awareness! My daughter and I both have AS.
Thanks for reading! God Bless you and your daughter!
I am SO glad that I found your website through the Facebook page ASAP. I have met a good friend through there that I have been able to talk to about AS. You are doing what I have been thinking of doing but haven’t felt good enough with my AS to do it. I am SO angry & frustrated that No one knows about this disease and that people look at my Dad & I like we have 3 heads when we tell them what we have. My Dad is suffering so bad with this. He was diagnosed too late and no meds seem to be working for him. I seem to be having the same bad luck. We need to do more to find a cure or something. I love my Dad so much and don’t want to see him suffer like this. You are blessed to start this and I hope that we can all be a part to help out. I hope you find some relief from your pain. Thank you for letting me vent. God Bless!
Venting is always allowed! The reason we are doing this is because we know YOUR stories, and YOUR apples will help the rest of the world realize what this disease is! The more entries we get the better…help spread the word!! I would love to hear your story and your dads…and remember to make an apple..thank you for your kind words! Remember we each have a voice…so now is the time to use it! God Bless You!
Thank you so very much for introducing yourself. I too suffer from AS and was diagnosed about 4 years ago at age 37 although I have suffered much longer. Because my AS went undiagnosed for so many years I also developed fibromyalgia, protruding discs, carpal tunnel, and finally scoliosis. I also suffer with PTSD. I seem to be in a constant flare because one chronic pain illness works against the other. My hubby and I have raised four daughters,we now have 3 beautiful grandchildren. I pray for pain free days so I am able to liftmy 1 year old grandaughter without hurting something. I wish you many pain free days. Your family sounds beautiful
Blessings~
Wow Kim, I am so sorry you have lived a life of physical suffering, but you are so blessed. It is hard raising kids with AS, but you did it! That is pretty amazing, and I hope I get to learn more about you! I too pray I have the strength to carry my kiddos around, though they aren’t babies anymore!
You are an inspiration! Thanks for all you do to raise awareness for AS… and for helping us to feel like we’re not in this alone. Blessings to you!
We are not alone. God Bless you too!
This blog is amazing! I was diagnosed in March 2010 after having low back pain for a year and a half. I joined the facebook page and am still trying to find some fellow AS sufferers. This blog says everything I wish I could say to those around me. Yes, I look fine but the hurt is constant and scary. It’s so nice to know I am not alone. I will definitely be sharing this blog with those around me so they can know a little bit more about this disease.
You are NOT alone. Thank you so much, for reading and sharing my blog. I hope others do find strength in my story. Keep fighting, one day everyone will know about AS!
Congratulations on beginning your blog, I’m really looking forward to reading more! It seems like this will be a great place for support and connections, as well as raising all-important awareness for AS.
Although it is not only about AS, I have just started a food blog which also has some little bits of info on my health and how eating gluten and grain-free has really helped. My story with AS is here, if you’d like to read:
http://katealicecookbook.com/2011/03/12/the-letterbox-the-dandelion-raising-awareness/
Thanks for your honesty and hopeful outlook:-)
Thank you for your link to your story! My list is growing which means we are all growing and working together! Makes me very very happy!
here in s0uth africa n0t many kn0ws ab0ut A.S…well i was diagn0sed when i was 17..living with A.S..for 5years n0w .here in S0uth Africa we d0nt have treantmant like Humira 0r enbrel TNF blockers .we just have painkillers ..A.S .changed my life ..but u gaved me h0pe 2 live life without thinking ab0ut suicide again..thanx
Wow Christopher, how exciting it is to have a reader from South Africa!! I am so sorry you have AS and dont have access to effective treatments. But never give up, we will find a cure to this disease, and I will make it a goal to see that people all around the world with AS will get adequate treatment!! You are strong, and I know you have that hope in there…just grab hold of it and never let go!!! Stand tall my friend!!
Awesome Blog! Thanks so much for sharing your story with us…it is great to know that we are not suffering AS on our own! I got diagnosed in 2009, after having back pain since 1999! I originally come from South Africa (where no one knows of AS.. i was never tested for it). I am now living in New Zealand and am trying to find a decent Ruematologist and possibly an AS support group?…it is all really scary. Doctor wants to put me on Humeria, but I’m scared of the side ffects….I really dont know what the best option is, but Im in pain pretty much all the time…even batteling to sleep!
Thanks for being an inspiration! X C.
Hi Claire,
Thank you so much for leaving such a sweet comment for me. They realy help me on my hard days….so please know when you leave me a comment it is like fuel to my fire! New Zealand was one my my grandparents all time favorite places, my grandmother used to wear this beautiful fire opal my granddaddy got her from there. I used to hear stories of Kiwis and all the wonderful things from NZ. AS is very scary, but you are not alone, and I would be more than happy to talk to you about my story and what I know. Please search for me on Facebook and friend me if you would like, I have taken Humira, Enbrel and Remicade, and like you I was scared each time…but the idea of a life with no pain and fatigue pushed me to try each medicaiton. I never got any relief from them, but many people have. I think you should give it a go, and try to push the scary side effects down, because it very well could be the miracle we all are searching for. Hang in there and take care, I hope you come back often!
Love and Hope,
Kelly
Kelly,
I am loving the blog entries! I was away and then had a few projects due, but I am just about caught up. There are quite a few I have enjoyed, but I especially loved the one about Seth – you must have experienced great joy after he was able to overcome such a setback – I had tears streaming down my face. Thanks for the smiles and chuckles.
Becky
Oh thank you! Having my kiddos has been such a blessing…and I will cuddle them up and smother them with love as much as possible..even if it means being proud of pee, or making them kiss me in front of their friends! It is my duty to make sure they fill their daily love quota! Thanks for the sweet words, sometimes I wonder if anyone cares about my personal life when I write….of course I then tell myself, it doesnt matter, because I care, but it makes it so much better when a reader really clicks with one of my posts…so thanks! I hope you will keep coming back, and I also hope you will send us your story and an apple….Lots of love!
Hi Kelly!!! Was it you who entered my pill box giveaway under “HurtingbutHopeful?” If so, check it out: http://lovingwithchronicillness.blogspot.com/2011/04/and-winners-of-giveaway-2-are.html
WooHoo! Thanks Maya, you are awesome. I really hope you send us an apple and your story, you have so much to tell the world, and you are making such an important impact! Thank you for motivating me personally to get this blog up and going. Take care and lots of hope and apples to you!
Thanks so much !! I needed to find your site. I have had AS for the last five years and have come through so much pain and tiredness. I often felt like giving up, but its good to know I’m only one of many people suffering in the same way. Kind regards and thanks again.
Kelly you are such a beautiful person! We only know eachother via computers but in my times of need you always seem to give me so much hope and faith to get through the most hurtful of pain. I am always amazed at all of the faith you have! You are very special to me and my disease and have become a big part of my trying to heal. I just wanted to say thiank you and God bless You! HUGS !!!
Right back at you Timi, and it is so nice to have you on my blog!! You my friend have always been sunshine to my dreary days too, so keep up your positive outlook and kiss that grandbaby of yours for me! Much love, Kelly
I am always here for you my friend and mentor!
do not worry ,my dear,god will help us . i have AS since 30 years but life is going on in usual way . thanks again.
I am refreshed to see your honesty in your blog about your life with AS, I too am sick however the doctors have just shunned me and told me as well that it is in my head. I have been put on antidepressants, nervous medication, sleeping medication, and a countless list of others with no reprieve from the pain, exhaustion, sleeplessness, and mental strain. I feel horrible and that is all the I am able to articulate to others. This “illness” has taken its toll on me as a person and on my marriage. My husband its tired of hearing that I don’t feel good, tired of his boring old wife, tired of my non-zest for life. I too have two small children and I seem at this point to be able to still maintain with them as well as allowed. They don’t yet understand why momma is cranky or cries frequently. The feeling is very lonely and VERY isolating. I have started to believe that I am crazy. I have even created a blog about my need to feel normal and “be happy.” I just want to feel like I did when I was 18, I am only 29 and feel as though I am 69.
I want the doctors to quit treating me like I am some junky looking for a fix or some random crazy that just wondered in off the street. I want to be taken seriously. I want someone to HELP ME!!
I just simply wish that the DOCTORS could get really sick and really scared, feel as though an alien has taken ah old of their body and then I would love to be the one to tell them that THEY ARE CRAZY!! That it is in their heads. It is really sad when you know that something is wrong with your body something is not right and yet no one will take the time to HELP YOU!!
Keep writing, I will be returning and I look forward to helping each other.
I am so so sorry. Your comment saddens me greatly, because you have described so accurately the pain we feel. I have big plans for you though. It isnt in your head, and I promise I will help you find someone who will listen and who will help. Dont you worry, we are strong, and we have power…maybe not a lot, but if you know where to look things get better fast! Keep fighting, and come around often, because I need to help you! You are too much like me. Please add me on Facebook….<3
http://medwire-news.md/interviews/videos.htm?video=EULAR-BRAUN you can see!