Why I Love Having AS!

20140322-014605.jpgWe think therefore we are

You wake up in the morning and your stiffer than a bone. You roll out of bed, try to get slippers on and stumble to the bathroom, and this is your good day! Have you ever thought, while lying in bed being stiff that your body must have had a good night sleep? Stretch out, move them footsies, take in some deep breaths and say “Today’s the first day of the rest of my life.”

No, probably not. First thing you felt was pain and discomfort so how could you possibly “believe” that something good is going to come out of waking up?

Every morning, save for a few, I stretch and say out loud “Yes, I made it through the night, now let’s get this party started!”

Before AS decided to take over my body I was like many of you. It hurt to get out of bed, it hurt to lift my head to roll over. It hurt to walk to the bathroom. But that pain made me realize “I am alive!” Without pain we do not feel, now with pain we are always feeling, but what are we feeling?

Did you start this party?

imageI bet everyone with a chronic disease woke up one morning and said “I think today I will give myself a disease!” Around six months your body began to torture you to no end. The doctors can’t find a reason so it must be in your head. We didn’t ask for this to happen, we didn’t ask to have a grand party where AS, Crohn’s, fibro, bone fusion, degeneration, pain and aches (fill in the blank with your party crasher) were the guests of honor. And how many of you attended one of these parties when someone you know got an illness? Not many I’m sure.

The first thing we have to do is tell ourselves that “we didn’t ask for this” and then we have to deal because it’s not going away we have to “fight back and fight back hard!”

Things I’ve learned since being sick

Yes I have learned that having AS might have been the proverbial slap across the head letting me know I wasn’t doing what I was meant to do.

Believe it or not before my AS came out of remission, because we all know it doesn’t get cured, my whole life revolved around my job. My life revolved around treating others, fixing them, and on most occasions I was successful. But did I really SEE what they were going through. No, not really.

The first thing I have learned is empathy. Doesn’t matter what the pain is, I can now understand what they are going through. From the patient after a stroke who cannot swallow to the patient with a traumatic brain injury, I now feel for them and find myself wanting to help them more even though my body won’t always let me.

The second thing I have learned is patience. Having a chronic disease make us all a little batty especially waiting for test results, doc to give a diagnosis, family members who give us crap about faking all our symptoms and the list goes on…. Now even if I waited in line for meds, traffic light or fast food, when the waitperson says “sorry for the wait” I look at them and say “no thank you for giving me this time for myself.”

The third thing I have learned is gratitude. imageI’m grateful every morning I wake up. I’m grateful I can get out of bed and walk to the kitchen to make my coffee. I’m grateful I have enough strength to work an 8 hour day. There are many of us with AS who cannot do the things I listed. Many need aids for functional mobility without them they don’t get out of bed let alone walk. I read on the support pages the pain and suffering my fellow Spondys go through day in day out and honestly am grateful that hasn’t happen to me yet! There are many times I read posts and cry, to see the suffering that people with AS go through and even though I don’t want to share in their pain and grief, I cry for them silently and pray that their pain is relieved soon.

Finally, I have learned that there is a reason I have this disease and have gone through all this pain and suffering. Without this disease I would have never gone looking online for support, I would have never started this blog that helps so many and I would never have met so many new friends who get me, who understand me, who have empathy and patience for those of us just like themselves. Each of us have this disease for a reason you just have to figure out what your supposed to do with it. image

If this disease had not happen to me I wouldn’t have had the time to finish several certification courses in holistic healing. Wouldn’t have had time to write articles, speak with other professionals or participate in awareness projects. I know I’m supposed to share my gifts and help other so yes I love having AS!


18 replies »

  1. I just happened across your blog and I agree with what you’ve said. Before having ME/CFS and heart failure whipping my butt I took little things for granted. Now I am grateful when I can go to a store, I’m grateful I can walk when some others can’t, I’m glad for the days I can cook, etc. Definitely have to look at things differently when you have health challenges to deal with. Great article!

  2. I have been living with back pain for the past 22 years. I’ve been through everything imaginable. No doctors could tell me what I had. I finally heard on the radio about a year ago about ankylosing. I screamed out loud and said this is what I have. I’m going to see a rheomotoid doctor on May 1st. I hope she can do something because the pain is almost too much to bear. I’m in desperate need for help.

  3. Hi Joyce, I call you by your first name because after coming across your blog and reading it I feel as though I’ve finally found a friend that gets and share my struggle. I was just diagnosed a couple of days ago with AS after years of chronic pain in my body. Since reading your blog I now understand how to manage and live with AS instead of just accepting that my body constantly aches without understanding what’s going on in my body. I too am grateful for having movement of my limbs and am able to do many things that others with this disease can’t. I too have empathy for others no matter what their situation might be. Everyday is a gift from God and I’m so glad you’re fulfilling your purpose by sharing through this blog. I just want to say”thank you” because now I realize I’m no longer alone in this battle, because until now no one understood what I’ve endured these many years. Be blessed!

    • Thank you DeeDee for your kind comments. I’m so very happy that my blog posts have helped you come to terms with what is happening with your body, just remember, you may have a health challenge but it doesn’t have you! I’m a little behind on posting some new info but when I do I hope it helps you as much as it has me. Be well, love and light will be with you. :0)

  4. Joyce, I wish you would read about a condition called Ehlers Danlos. They are just finding out more about this genetic disorder. There are different forms and they greatly effect the spine. They are finding out that many people with it have a tethered spinal cord. My niece has had three discs replaced and I have had two.

  5. Ma’am
    I agree with all you have stated. I have 2 queries :
    1. What are the holistic approaches you followed?
    2. Do you really think biological injections do help you?
    I have a months time to decide abt them & would require your guidelines.
    Thanks & Regards

    • Thank you for visiting my blog Suhani. Yes I do feel the biologics helped me especially with the pain as it helped to decrease the inflammation, but I feel that it isn’t for everyone. A holistic approach would be more optimal but again it doesn’t work for everyone. Remember we want to heal the whole body not just the symptoms. Find a holistic practitioner before going down the biologic route and see if they have any suggestions for you. Also find a Physical Therapist who knows about AS and get an exercise program set up for you. You will benefit from this in the long run. Good luck and keep me up to date about what you decide.

      • Hi ma’am. I read your energy testing. I normally apply the positive aspect thing to my life. Yes I am going to a physiotherapist every day & going to work. I am not having that positive feeling for biologicals & presently feeling better with the use of Ayurvedic medicines. Want to try acupressure as I feel that it could not give me side effects. Discussing this is making me feel good , as my family is after my life to use biologicals as they feel that could improvise my state otherwise a hip joint replacement is recommended.
        So again any other alternative or holistic approach that you think could help me, then plz share. Any positive thinking methods which could help me more that you use.

      • Suhani, I would definitely keep up with the Ayurvedic modality as I hear it works great, not to many practitioners in my area to see so I haven’t tried any. Accupuncture would be beneficial as well, but keeping positive is the best way to combat the depression that goes along with any type of disease. If what you are trying is working keep with it, don’t let others influence you into doing something you don’t want to. Remember it is YOUR body not theirs, they don’t live with what you do!

  6. You have said it all, from the pain to depression. It was refreshing to read your blog and hear you say what I’m feeling. Recently diagnosed with AS . Thanks for inspiring me to take this path one day at a time. So glad I came across your page today. Really needed it………..Thank you! Have not started any biologic or pain management yet…..Not sure of anything . Have thought about Holistic medicine.

  7. Hi Joyce…and others! Just “re-found” this site and wondering if you are still active? I have had A.S. for about 50 years now and am nearing the end of a long and mostly fruitful life. I chuckled over so many things you wrote in your blog about dealing with A.S. I also had to learn on my own how to get the “right attitude” as it was so difficult until finally diagnosed. Much harder back in the 60’s and 70’s when I finally found out what I had. I also learned to do it all as soon as possible and never say…”Some day I will have to try that”. Instead I said…”Today I will try that”, as I did not know if I would still be able to do it in the years to come. I feel I accomplished more with this attitude and was also right. Later in life, I have NOT been able to do things so my advice to all of you why have this ugly disease, … Do it all now while you can. Later you can reflect on how full your life was…..not how it could have been if only you had done things sooner when you still could. And,Thanks for your efforts Joyce. Anything else? I will check back from time to time to see if anyone is still reading these. Jay H.

    • Hi Jay, glad you “Re-found” me. :0) I have been doing really well, no meds just supplements and my oils to get me through rough patches. I discovered a herb called Kratom that I use when the pain isn’t so hot, and it works very well. I still go out and do what I want to do even knowing I might not feel so hot the next day, but like you said live for the now, not later. Take care my friend, and please check back in. Joyce

      • Joyce, From your replay, you mentioned an herb that you called “Kratom” that you use. I have not heard of this herb. Can you tell me more as to how you take it or use it and how it helps? Even at this stage of my disease, I feel there are so many things we all can learn from one another. Thank you so much for your response. Jay Hartland

      • yes Jay, I heard about the herb on a talk radio show one night, and the guests talked about how it helped with pain and got people off opioids. Most of these people had been on meds for many years due to chronic pain and they were so impressive I thought I would give it a try. I had it in my freezer for some time before my C4-C5 fusion started to really bother me, pain on a 20 scale, then I remember I had the Kratom. I took it for about a week and with each dose I noticed less and less pain. Mind you I no longer can get pain meds because I have no insurance, so this is my only solution. Now I take the Kratom when my pain hits a 6 and I’m fine within a couple of hours. It does take about 40 minutes to kick in, tastes like crap (I mix it in chocolate milk), but works great. Many of my friends have tried it and like it. I put a link up to it so you can research it. Give me shout if I can help.

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