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WHAT HAVING AS HAS TAUGHT ME!

Sorry for the delay in posting this year, but got caught up in a life being transformed. Let’s begin from the beginning say about the time the WYASO ended.

Last year, if many of you remember, I went back to work after my medical leave to another location. The hospital thought I would do better with less stress and moved me to the outpatient center. In hindsight it was a good decision but at the time I was not at the least bit happy. I left my friends, support group and family I had come to love for another group of people I had no clue about or who had any idea about what my “life” was like.

I started working two days a week and in the spring when I was ready to take on more hours they would not accommodate me. I had to go out and find “another” job to supplement my income. I started doing home health for a company two days a week, which turned out to be my saving grace. At first I didn’t think I could ever go into others homes and give them therapy…. that twinge of OCD I was afraid, would rear its ugly head, and I would be cleaning my home every night once I got home.

By August the hospital wanted me to cover more locations, changing days I worked and making it difficult for me to keep my other job. The final straw came when my supervisor asked for me to get a note from my doc on my exact limitations. I just turned and looked at her and said “How about I make it easier on you? As of today you have my formal resignation!” The look on her face was priceless which was followed “But what about your insurance?”

My insurance well didn’t think about that now did I? I responded to her question with “Don’t need insurance if you’re not sick do you?” That’s right, I’m healthy why do I need any stinking insurance? And I was right, so far I have been healthy enough to not need it but how did I get this way you ask? Last year you were pretty much on your death bed? Yep I was and I’m here to say AS has taught me a lot about my health this year!

singLiving with AS is hard for everyone who has it, but I just couldn’t live like that anymore. I decided that for my health to get better I had to make some serious changes in how I lived. I’m not talking about diet changes; I tried that too many times to count without success. As everyone knows, who have read any of my blogs; I’m a researcher through and through and have spent the better part of the last 7 years trying to find ways of healing myself. Well I haven’t stopped doing that but changed my direction. Instead of looking for the medical cures I started investigating what my body wanted and needed. Now I know not everyone believes in the things I will be talking about, so I won’t be offended if you don’t read any further.

For most of my life I have been drawn to crystals but never really looked at them as a source of healing. I finally decided to enroll in a crystal healing certification course just to get a better understanding of how rocks and gems can help the body to heal itself. During this time I learned a lot about these special sparkly beings on our planet and was absorbed into using them in my everyday activities. I will discuss how to use crystals for healing in a future post, but for now if you get a chance start looking at crystals, rocks and gems and you will be amazed at their healing qualities.

During one of the classes I learned about electromagnetic frequencies or EMFs and how they disrupt the human organisms programming. To test it out I started turning off the electricity to my room every night. When I first started this I was on 3-4 painkillers a day along emfwith Humira injections and only making it through two workdays a week. I was exhausted just cleaning one room in my house and not sleeping very well even with sleep meds. At first I really didn’t know what to expect but as the weeks progressed I realized I was taking less pain meds and had forgot completely about taking my Humira injections. By the end of two months I was off all pain meds and to this day have had only one Humira injection. But was this my cure?

While conducting an online search for help with tinnitus (I have bilateral tinnitus from taking too much meds); I came across a website for essential oils that listed numerous protocols for any ailment you could possibly think of. As I was looking at the list I came upon a protocol for AS. Of course I had no knowledge of the oils that were listed and honestly it all sounded like gibberish. I thought about it and decided to find a consultant. I ended up with a woman who sells essential oils coming to my house to give me a little presentation. I have to mention that there are many different types of essential oils and companies who sell them, but at the time I didn’t know this so I went with the one that came up more frequently on my google search.

I had told this “wellness” expert that I had AS and she, doing what she does, brought along all of her many oils. I have to say my house smelled really good after testing many of them. I had the list from the protocol and she gave me samples of each of them to try out. I have to say that I was really impressed so much so that I joined just to get the wholesale price for the oils. Because I signed up the consultant gave me the companies “oil” book which was full of technical and scientific information on all of their oils…

To sum this up, I read that book from cover to cover; watched YouTube videos on how they processed the oils and the benefits of each one and then spent $300 ordering what I was hoping would help me.  What I ordered was any oil that was considered an anti-inflammatory and followed the protocols and began taking the oils internally…. yep I did say internally.

I took the oils via capsule 3 times per day. After about four days I noticed I had even more energy, less stiffness and functioned better overall. The one benefit of the oils I hadn’t counted on was how improved my gut function was. I continue to be on a modified gluten/low starch diet but when I eat that big piece of carrot cake that I so love, I’m not paying for it like I had been, actually I haven’t had a problem with my lower GI since starting the oils. As of today I still use the oils and use them for way more other things than just making me feel better.

So now the present… I’m working four days a week for the home health agency, actually I am working for myself and contracting with them and it’s working out marvelously. It is so nice to wake up when I want to, make my own schedule, see patients for the length of time I want to and best yet; I don’t have anyone telling me what to do. If I don’t feel like working I stay in bed, but haven’t done that but one time. I haven’t needed meds, my stiffness is minimal and my mind is clearer than it has been in years. Quitting my job at the hospital was the best decision I have made and I should have done it years ago.  I fully believe that the job was making me sick, so back to my headline;

Having AS has taught me that:Biofeedback Analysis and Treatment

MY BODY is a sacred unit which needs to be listened to in order to function properly. The days I quit listening to my body are the days that all hell breaks loose. You know those days? Not only does your body feel crappy but the rest of the household falls apart as well because if you don’t feel good then everything around you feels poorly as well. Why do I say this? Everything is connected; you’re feeling good depends on what you do and how you listen to your body. “Why are you doing this?” the body asks as you are on your hands and knees scrubbing that stubborn stain back behind the toilet. “I can’t walk that far today!” as you try to put everything up that has been stacking up in piles for the past week. You have been there as all of us have. The world won’t come to an end if we don’t get the kitchen cleaned, the floors mopped, the kids bathed so WHY aren’t you listening to YOUR BODY?

MY BODY does not like negative thoughts and energy. Every time I get around someone or something that doesn’t feel good; friends, restaurants, patients, traffic… this list could be endless, MY BODY goes into this retraction mode trying to shield me from all this negative mojo. I feel it throughout my body like a clam closing down to protect its pearl. Afterwards I’m weak and every muscle aches. It took me a while to figure out what was causing this until one day I was feeling super fantastic and went to a patient’s home. I walked into the house and immediately had this feeling of the room closing in on me. The patient was homebound and preferred to just lie in bed and die even though death wasn’t an option. But this patient had put this negative field around them and emitted serious negative vibes. The patient didn’t want help and would rather live in misery. These types of situations happen frequently to me and I have had to listen to my body before walking into these houses; to clear and protect my energy so I don’t absorb theirs. I know I cannot help everyone even though it is in my nature and body tells me this all the time, I just have to listen to it when it is telling me MOVE ON they aren’t worth it!

MY BODY likes stress free environments. Life is stressful but we can all keep from getting stressed out to the point where our body starts shutting down organs and other bodily functions to try and rid it of this invisible parasite. I always though I handled stress well, that was before AS took full effect. Now when I begin to get stressed my right shoulder will begin to slightly hurt and if I don’t rectify the situation with either a calming moment or a good massage it will go into a full blown inflammatory state. That leads to a bunch of other muscles deciding to join the party until eventually I’m walking around like the TIN MAN. Knowing how to deal with stress is important and each of us deals with it differently but we have to deal with it in order to feel good. How does your BODY tell you when it is STRESSED?

MY BODY is in charge of my mind and my mood. Admit it, if you FEEL GOOD you sound good, you look good, you think good, you talk good, you walk good, right? I can think better, work better and enjoy life when my body is HAPPY! Can you think of a time when you just sat and laughed so hard you wet your pants? Or how do watching YouTube videos of animals make you feel? When your mind is preoccupied with happy thoughts pain suddenly disappears, why do you think that is? How is your BODY controlling your mood?

MY BODY has the unique ability to bring me into alignment with the universe (GOD or other Deity). When I’m feeling blue, depressed, out of sorts I can feel my body transitioning me to think better, feel better; quit feeling bad about having this damn health challenge, get out and live, love life and when I do follow its guidance I feel one with the universe. Life is much easier if we keep ourselves from fighting the inevitable, what was planned, what the universe has in store for us. I never asked to be a spokesperson for AS, none of us did, but we were chosen for a reason. We have to use what we have learned, what our bodies have taught us to help others and these others don’t necessarily have any diseases. They are just people who need guidance and what better people than those of us to guide that have had major life challenges?

Every day I am presented with an opportunity to teach others about individuals with health challenges. I’m grateful for this life and I have AS to thank for it. If I look into the past the person before health challenges cared about herself, getting ahead in her career and making lots of money. Now none of that matters. I get joy from helping others and have to thank my AS BODY for this.

That said this brings my blog to a close, final one for the year. But during this Holiday Season if you just take time to listen to your BODY and really look at the person you have become ask yourself this question:  Am I the person I want to be?

20131212-014657.jpgMay each every one of you have a Merry Christmas and a Happy New Year!

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20 replies »

  1. Fascinating story! I have had ulcerative colitis- closely related to AS, and although I have lived many years without a large intestine and therefore no attacks, I have also lived with limited energy, struggled to work full-time…I understand what you have lived through. I have learnt and experienced the truth that we are one being- body, mind and spirit and each affects the other; being happy, living a simple life, simple food, loving and being grateful, being satisfied with what I have…
    I’m interested to know more about your use of oils.
    Best wishes, stay well! and happy Christmas.

    • Thank you Kate for stopping by and reading my post. I too have UC and it has been a doozie to rid myself of it. I do still have all my viceral parts thank goodness and I cannot imagine living without part of it. I am glad you can and are doing well. I found that I had chronic fatigue syndrome which goes along with AS and did a cilantro cleanse which really helped me with being so tired all the time. Work so well now I’m never tired! lol
      You can find a lot of information on the web and youtube about essential oils and then if you want to give them a try order some. I found a good distributor that sells their oils pretty reasonably. I hope you have a wonderful New Year and Happy Holiday.

  2. So glad to see a new post from you, Joyce, and so glad that you are where you are right now! I so admire your tenacity and open-mindedness in dealing with your illness, and I’m so glad you have tried things that are working for you. Happy holidays!

    • Oh thank you for being such a supporter for this cause and for me! I hope you keep up with your blog I do read it for the laughs it gives me. I hope you and your family have a blessed holiday and Happy New Year!

  3. I suppose everyone has his own way of dealing with AS, but your way is NOT the way most people would benefit or get relief. I was diagnosed at the age of 22. Six months after we were married. I am 65 years old now, and have never tried crystals, oils or any of the other things that you have. I have to wonder if you’d feel better even if you’d never tried all your ” different ” methods of pain and inflammation relief. I have to wonder how many people will spend their money on your methods, only to feel miserable. We should be glad that we are blessed with how far medicine has advanced. We are fortunate that science has advanced to the point where drugs are relatively safe (relatively) and available.

    • Nancy, I’m sorry my blog offends you I never set out to change peoples minds on how they deal with their disease. I write my blog as journaling effect for myself and some people have benefited from my personal experiences. All I can say is if I had left it up to as you say “Science” I would be in a wheel chair, not working and having my family care for me. But thanks for stopping by and reading my post. Have a Happy New Year!

  4. At 56, I’ve just been diagnosed with AS (Oct 5, 2014)… probably have had it for years, but didn’t know it. I’ve been on heavy PT and only taking Naproxen, plus a few supplements… Tumeric, Tart Red Cherry, Calcium, and Mens 1 a Day 50+. So far it’s working. One question… do you know where i can get an “Anky Spon What?” T-shirt?

    • Thanks for visiting my blog Andy. I am so glad you don’t have all the symptoms and pain that others have with AS. Tumeric and tart red cherries are great inflammation busters I think. So I was thinking after I say your post I should have a logo and sell some T-shirts so I went to zazzle and made my logo. Would appreciate if you checked it out and let me know what you think. All the products are modifiable so you can pick colors you like but I don’t have a store up yet but follow this link and you can buy one if you like them. Would really appreciate your advice on the issue…
      http://www.zazzle.com/anky_spon_what_t_shirt-235616266310067873 mens shirt

      http://www.zazzle.com/anky_spon_what_tee_shirts-235664915842800651 mens shirt 2
      sorry you will have to copy and paste it into your browser.

      Happy New Year!

      • Joyce… it looks great. It’s amazing how many people I’ve spoken to that said “Anky what”? I’m going to try and order one today. The limitted awareness of the disease is amazing. It took me 2 days to even say it correctly let alone spell it. I scoured web sites on AS, trying to educate myself and was fortunate enough to find your blog. Happy New Year to you and the rest of those dealing with AS. In reading people’s journey with AS, I feel blessed to only have mild case…. to me it’s extreme, because I can’t lay in bed for more than 2-3 hours. Reading other people’s struggles I’ve become motivated to take control of my body. I’ve changed my diet, developed a daily exercise routine (with the help of a PT) and have began seeing a Rheumatologist. If any other people happen to read this… order a t-shirt too… let’s spread the word.
        Andy

      • Thanks Andy, I set the t-shirts up so that they can be customized so you can choose different colors, styles etc. I ordered mine in long sleeve and can’t wait to see it. Thanks for giving me the idea. As far as my AS I am glad I could tame mine down and that I have pretty much put it into remission. But as you can see by my blog it took me a long time to figure out how to do that. I think we can do this but it takes time and patience which a lot of people don’t have. Thanks again for your support.
        Joyce

  5. Jouce, I would love to know which oils you take. I found magnesium to be a great help with fibromyalgia pain, when the doctors were insisting I took an anti-epilepsy drug! I’m really pleased to hear that whatever you’re doing is helping and I also believe that stress is the root of all pain. Admittedly I still have AS pain when I’m on holiday and not stressed, but it’s way worse when I’m angry or taking too much on.

    As for the ridiculous negative comment you received, clearly some people don’t understand that you’re writing about YOUR life with AS, not theirs!

    Best wishes, Juliette

    • Thanks Juliette, I know you understand full well about the negative comments! As far as the oils I put Frankincense, Melaleuca, Oregano, Lavender, Patchouli, Roman Chamomile, Myrrh, Rosemary, Peppermint, Wintergreen, Clove, Thyme, Geranium, Helichrysum and Juniper berry into a bottle of lotion usually the Equate brand. About 5-10 drops of each and mix it up. Then I put it all over my body morning and night. They say Wintergreen, Rosemary, Thyme and Helichrysum and Lavender work great for Fibromyalgia. I learned how to make a natural salve out of beeswax, coconut and olive oil and in that I make a double strength concoction when my muscles really go to pot. It really does help after a long hot hot bath!

      • Ah, I actually thought you were ingesting the oils 🙂
        I make a grapefruit and almond oil which I use to wake me up a bit post-shower, and use lavender or juniper oil in the bath along with Epsom salts.
        That’s really interesting. And you can really feel the difference?

      • Well… I do ingest some of the oils when my pain level due to inflammation exceeds what my human threshold can handle. I found that Frankincense, marjoram, rosemary, peppermint, geranium and lemongrass work really well when I take 2 drops of each 3x a day. I put the drops in a capsule as I can’t stand the taste of some of them. To wake me up and get me going I breathe in peppermint, orange and frankincense after putting a few drops in my hands then I rub it on the back of my neck. Like you I like the lavender in my bath but also like sandalwood as it seems to help with the back pain I get occasionally. I really think the oils work, I have gone all year without a cold and being around sick people all day that is a testament to how well they work. I just can’t seem to find any that work to help me sleep! I will try juniper oil in the bath and see how that works. I think I should buy stock in Epsom salts for as much as I use. :0)

  6. Joyce I have not formally been diagnosed with AS, but began struggling with stiffness and chronic pain at a young age, that has spread through out my body and now caused inflammation in the SI joints of my pelvic. I went two years with out sleeping fully. I would struggle to go to sleep and then wake back up just a few hours later. My best friend is a Pharmacist, would shared essential oils with me. She told me to put Lavender on the bottom of my feet to see if it would help me sleep. I put like 3 or 4 drops on the bottoms of both feet, and slept all night the first night. I have added a few other oils to my nightly routine, cedar wood in a diffuser, sometimes I use a blend of Lavender and Ruta something. Occasionally I will use a melatonin capsule that has Lavender and a few other oils mixed too. All of the oils really help with my sleep, and the I’m not stiff in the morning after waking.

  7. Getting chiropractic treatment seems to help with Ankylosing Spondilitis. I am going through a chiropractic treatment myself and a fellow patient suffered from AS and the treatment really helped her…

    • Hi Amy,
      I use a lot of different oils lately. I have just got my Certified Aromatherapy license so now I know about more oils than I knew about before. What types of problems are you experiencing? I would be glad to help you out. I have a website at jlapothecary.org and you can see what I do. You can contact me through there if you like.

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