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Have you ever heard of Ankylosing Spondylitis (AS)?  Probably not, but twice as many people get AS than Multiple Sclerosis (MS) and everyone knows about MS.

AS is a long-term disease that involves inflammation of the joints between the spinal bones, and the joints between the spine and pelvis. These joints become swollen and inflamed. Over time, the effected spinal bones can join together.

AS is an auto-inflammatory disease that has effected mainly my sacrum (the bone above the coccyx) and my hips, but have felt its presence in my elbows, feet, neck and spine. I cannot bend over, bend back or turn my head to my left shoulder without major discomfort. To top it off now I have ulcerative colitis which makes my gut hurt every time I eat something that doesn’t agree with it. When the pain in my gut gets bad it’s as though someone has opened me up with a jagged sword.

My body is in a state of constant inflammation and it is sometimes so painful that I cannot even get up, roll over, sit or curl into a ball. If I lay to long in one position pain shoots up my spine and back down again surrounding my hips, over and over. Not to mention the pain I feel in my “hind end” when I sit for too long.  Can you imagine what it is like to sit on flaming hot pokers that are moving up and down and in and out?

After several days of this chronic pain I just want to curl up and die. But what makes it worse is the way I get treated by others who don’t understand what my pain is like. I feel bad enough already, not being able to do the activities you want to do. I feel bad every time a miss a day of work. I feel bad when I cancel on you, so don’t make me feel worse by telling me “you’ve been this way for 3 weeks, when am I going to get some time to do what I want?”

I want you to understand that when I’m sick I am still human. I’m considerate, even when I’m in pain, to cook you supper, get your food for you at the grocery store, wash you’re clothes and even sit and watch TV with you when I would feel much better laying down.

I spend most days in pain and on others in exhaustion, don’t think that I am looking for sympathy. I don’t want sympathy but some compassion would be nice. Do you know what it feels to hurt and just want someone to put their arms around you and say “It’s going to be OK?” Do you know how it feels to cry yourself to sleep each night because you feel so bad that you can’t do the things others want you to do? Do you ever think about what this constant pain does to me?

When you are sick you want soup and medicine which I fix and bring to you. I ask you how you are feeling, I take your temperature. I don’t get upset because we can’t go and do something, it is what it is. But have you ever thought of getting me something, helping me out by doing some cooking or even just bringing me a cup of tea? No you avoid me like I have the plague.

Unlike you I am stuck in a defective body that will eventually break down. Some days are good days and these can last for months, but I never know how long a flare-up will last. I try every new remedy to help alleviate the pain and anything that will give my life some semblance of hope. This hope is all I have until then this is the body I have to live with and I need you more than ever to understand this.

The next time you have the slightest amount of pain, multiply that by ten and think about having that pain day in and day out, month after month and year after year…. This my friend is my life!

You are free to use any information on this site after you contact me.

17 replies »

  1. Hi! My name is Sue, and I’m from SlimKicker, a diet/fitness app and online website. I saw your blog a few days ago and it captured my interest!

    I’m contacting you b/c we’re about to release a fitness tracker (similar to FitBit) early next year, and are looking for bloggers who would be interested in receiving 1 for free to review when it is out (negative or positive).

    Would you be interested in doing this? You can email me at: sue (at) slimkicker (com) with ‘Review’ in the email heading if you are.

    Just to let you know, our online website SlimKicker basically turns your diet/fitness goals into a level up game. The tracker will work in conjunction the website, and allow people to track calories burned and number of steps they walk automatically. The more they exercise, the more points they rack up! That’s basically how it will work.

    Anyway, hope to hear back either way…

    – Sue
    P.S. You can choose not to publish this comment as this is more of a private comment 🙂

  2. That is awful. I understand the ulcerative colitis and I know what it’s like to cry yourself to sleep and have agony in your body and mind. I too tried everything. I have found eating natural foods has helped me but more than anything else Louise Hays you can heal your life book has helped me so so much. My support and healing thoughts are being sent your way. Warmest smiles. Jessie.

    • Thank you Jessie, I love that name by the way! I have read Louise’s book many a night, it is wonderful and have it easily accessible on my iPad… lol that is why I like your site so much, the food and it being all natural. I am trying to encorporate that lifestyle in my mission to cure myself…

      • Thank you Joyce 🙂 I am so pleased you have it. I would highly recommend seeing a good nutritionist or naturopath. I totally believe that you can improve the quality of your life dramatically. I am very happy to help you where I can. Please let me know if you have any questions. Jessie.

      • Hi, I have just recently been diagnosed with AS. I know I’ve had it for a long time because now I can put a name to the pain I have and the eye problems. I will really appreciate reading your blog. My Doctor gave me steroids and pain pills. Is there a good anti-inflammatory medicine. I’m doing physical therapy, but still hurting like crazy. Thanks for any advise, Linda

      • Hi Linda the best advice I can give you, as many of my own cures are unconventional, is change your mind set about your health challenges, the more focus you put on AS the more you hurt. Focus on diet, living healthy, and keeping yourself fit. The more meds I took the worse I felt, so my focus was doing what I could to get off all of them. It has been a long journey but I no longer take meds or have any pain so it is possible once you change the way you think about your illness. Good luck on your journey to better health. Email me if you have any further questions ~Joyce

  3. I’m so happy to find someone that is going through the same thing! I just got diagnosed with AS about a month ago and i am 23. I just really wanted to put a name to my pain and now i can. Thank you for being willing to share your experience.

    • Bethany, I’m so sorry that you were diagnosed with this disease, but knowing this now, at this time in your life, is much better than having to go through years of painstaking tests to figure out what is wrong with you. Consider yourself one of the lucky ones as most with AS have waited countless years to get some type of diagnosis, and there are even more who know they have AS but cannot get one. At your age you will be better prepared and will educate yourself on what makes your body feel better. If your lucky, like I was, you will go into remission. Something that is very possible. Keep the faith and if you ever need any questions answered just shoot me an email. I will be glad to help in a way that I can. Best of luck…. Joyce 😃

  4. Hi Joyce I could have cried when I read your story. I have had a back ache since I was 17 years old.I went to a chirparctor then and have been trying to get to answers why my back aches so much.Not only my back,its my pelvis,hips neck shoulders,arms.wrists,elbows legs calves ankles feet and toes.My foot right foot is so inflamed it burns and I can hardlywalk on it my toes feel the same and are curling.I could cry with pain.I have been to a rheumatologist and quested him if I may have this disease and he told me flat out no. Iam on inflammatory drugs and tried so many had x-rays scans MIRS and no one can find why I am in tremindus pain. I can not sleep well and don’t know which way to lay I get cramps in my legs foot pain gabbing in my back and just lay and wait what’s nexts. I had orthopedic surgry on my knee but no replacement my knee is so painful and I can hardy bend it.The Dr. says I’m to young although I am in my late 60’s now.I have a hard time to bend and stand up.It hard to do my work. I have a spouse that don’t help me or care about me and I bend over to please him. He sees that I am in a great deal of pain and just because he don’t feel it he figures I am just fine.So can you help me how to deal with this.I will tell you there have been many times I wish I could cut off my body parts so I wouldn’t have pain.Thank you for letting me cry on your shoulder as a lot of people don’t understand what a person goes through with pain.

    • Agnes, never feel bad for how you feel. Thank you for sharing your story and yes, I know exactly how you feel. Have you tried modifying your diet? Sounds like your body is not managing the inflammation well and the anti-inflammatory meds are obviously not working. Is there another Rheumatologist that you can go to? What about your primary care provider? Your body isn’t inflammed for no darn reason but xrays and MRI don’t necessarily find what is going on. You could have a combination of AS, fibro, lupus any number of things. I would definitely be looking for another doctor. As far as your husband, do what I did… tell him to go F*** Off! That is what I told my husband and I started thinking about me and NOT him. He figured out my pain was more than he THOUGHT it was. It took a while of listening to him cry and whine but I would just leave the room. You have to take care of yourself because as you know no one else will. I’m sorry I’m not full of the answers you are looking for but I’m here for you if I can help.

      Joyce

  5. Hi Joyce,
    My son is 20 years old. He was diagnosed with Crohns when he was 17. He started on Budesimide and seemed to be doing well. He went off to college and by second semester became very tired, was losing weight, lost motivation, sore hips and lower back. He came back home and started visiting his physiotherapist and went through various tests which determined that he now had AS. He started on Humira and was getting back to feeling like himself. He was exercising regularly and eating well. In August of 2014 he dove into a pool which resulted in a compression fracture of C5. Unbelievable! After each diagnosis, he was able to come around and accept what was ahead of him. Unfortunately, this last injury has taken its toll. Although he was very lucky and the fracture has healed and he is walking and able to resume all activities, he has lost weight, has lost all motivation, is tired all of the time, has lost his appetite and just can’t seem to rally back.

    I don’t know how to help him. I have been unable to find support groups in this area. I have looked at several blogs or chat lines and find most to be very depressing and therefore do not want to introduce them to him. He has become angry and does not want to talk about it to his family or to anyone.

    Whatever advice you can give me would be appreciated!!!!

  6. What a fabulous article; just about spot on to what I have been going through over the years. I am newly diagnosed and have started blogging about it. The name of your blog is brilliant!! Most people’s reaction when I tell them what I have!! I have only just found you via this post, I am going to have a proper nose around now as this is just the sort of blog I have been looking for as I have found so few personal experience. Thanks for the great read.

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