A.S. Face 1112: Simone

Face 1112simoneSimone
Hello, my name is Simone.
I am 23 years old and have been a sufferer from childhood. Constantly back and forth to the doctors with my mom for them to only tell me I am growing, it is stress, and that i am too young to be in all this pain. It all started with my legs they would always ache and i could not walk. this leg pain lasted over 10 years and then my hands started to hurt and my shoulders and hips. I was always sick as a child and have asthma and tend to have bronchitis and upper respiratory infections often. I was also diagnosed with IBS and my stomach hurts often more so at times that i dont even want to eat. I am always fatigued and have vitamin D deficiency. For the past 2 years has gone down hill. I got sick back in April with what was thought to be strep throat and it turned out to be an “ulcer” in my vocal cord and I was sick for 3 months. After a month of my throat feeling better i got sick again this time with bronchitis and since then i am not myself. The pain is so much worse now than ever. I cant breath because it hurts and my ribs hurt. I cant sleep because my body feels like it is putting to much weight and pressure on myself so a lot of the times i am awake. For the past two months i have not been able to shower normally because standing has become so tire sum and painful. For the past 4 years i have been working with individuals with intellectual and physical disabilities and i am afraid i am becoming too weak to perform and i am denied assistance. I now see a doctor at a spine clinic which i go for PT and Chiropractic which helps me become loose when i am stiff but only for a short time, I go 2 to 3 times a week which is very costly. I swim on occasion but have been so tired and have no energy to do anything extra and have also become very depressed…. I cry all the time from pain and I have been dealing with pain my whole life. I thought having answers would help but it doesn’t because i am afraid…afraid of my future… I am 23 years old and I need help so that I can do the right things so that i can keep my body working and moving as long as i can. I have met the love of my life and soon to be married but i fear for what may come. I want to spend more time enjoying myself and don’t want to become a burden on my fiancé even tho he takes care of me now when i am unable to build up the energy to do my normal routines I just want as normal as possible for him and I….. Please help! I am not a medication taker and believe more of a natural and spiritual healing. God has a special place for me but its is becoming so difficult each day. I am desperate for support and advise.

New Hampshire, United States of America

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9 Responses to “A.S. Face 1112: Simone”

  1. Simone, I wish you would be open to medications. I have been on two different TNF blockers and it has helped give me my life back. If you really are against meds, then, you could start juicing and stop eating starches and especially gluten. Drastically changing my diet has given me so much more energy and the pain has greatly subsided. Good luck and HANG IN THERE!!! You can do this. There is so much strength and good advice on this blog and so many people to draw inspiration from.

    • yes i do have a diet plan that i am trying to follow. I am super sensitive to medication and more often they make me sick to my stomach i think because my IBS not sure. My dad gave me a juicer that i am going to try soon. I feel better knowing there are people out there for support. I think because of stress i am doing kore poorly a lot has happened this year and i am trying to get back up on my feet and move forward but with new friends from this site and am more hopeful 🙂 So thank you

  2. Hi. Welcome. I am going to Johns Hopkins hospital and to Philadelphia for world renouned second opinions on our options with this disease. I’ll keep you posted.
    In the meantime – pain management helps me to function and get to work. I know narcotics aren’t always the answer but my philosophy is that this is the kind if thing they are made for.
    It takes my pain from a 9 to a 3, then I can begin my day.

  3. Simone I completely understand u. I am still battling with my A.S and each day I learn more about things I can do to help myself. We all have our worse days when we feel so helpless but dont let that consume u. Stress will only make u feel worse. There are also books that you can read about A.S. and see if uu can adopt some of those ideas. I also thought that by having a name to what my health problems were associated with would help me ….but honestly it left me with more questions and a lot of learning to do from my end. Take it day by day and look forward to your wonderful future with the person u love and enjoy life and if you ever need to vent to someone my email is Jenniferpalma@live.com and take care Simone.

  4. Hey Simone I been battling A.S. for 40 years. I know what you are going
    thru. I have good and bad days. I take pain meds when needed. I am still working a full time job. I will never give up and you should never give up
    either.

  5. Dear Simone,
    Thank you so much for sharing your story with us.
    SIncerely Cookie

  6. Dear Simone,
    I live in France and therefore blessed with the best (free) Health care (social security) system in the world, so I had access to many sorts of specialists, all sorts of therapies, physio with various machines (cryotherapy, short wavelength, fantastic for inflammatory joints) or even in water, homeopathy&acupuncture with my GP, and the Godsent “biotherapies” anti-tnf alpha treatments.
    I also learned a lot via personal research and patient association providing in-depth education on the illness and the lastest research. I know now that AS is a autoimmune condition that is sort of “twinned” to 2 other autoimmune conditions, that is psoriasis (which I have, it helped diagnose the AS, which could be considered as a psoriasic rheumatism/arthitis) and also Crohn’s disease. I’m telling you this because it is very common that sufferers are diagnosed one of the 3 illnesses and display symptoms of the other area that autoimmune disorder could affect, skin or digestive system, but specialists of each area often focus on their particular domain (joints for a rheumatologist) and ignore others. You are mentionning a lot of symptoms that may have been overlooked as mere “IBS” but could very well be Crohn’s disease. I’d urge you to ask for a referral either to a gastroenterologist or even better to a specialist of multi-domain or rare diseases such as AS, like the TV character Dr House, in hospitals it may be called “intern medicine” or “diagnostics” or immunology.
    I would seriously advise you see a nutritionist, the hypotoxic diet is known to soothe, reduce or at times even cure autoimmune patients such as AS sufferers. The major but drastic change is to stop industrial food poisons like “white stuff” : wheat/gluten/white flour, cow milk and dairies (I find goat and ewes products don’t make me ill but you may not find much in US, I don’t know), white sugar & saturated fats (margerine). It is extremely hard, antisocial and expensive to completely stop gluten and dairy products, and the experience of my immunologist tought me that I wouldn’t get sick after eating organic products, even containing wheat/dairy. But it does probably, long term, cause a “low noise” toxic inflammation, as I always found that cow milk stuff flares up psoriasis. Do try a drastic 1month detox, then try to re-introduce organic stuff and see if it helps. I should warn you that inflammatory conditions are linked to over-acidic body state, so considering how quickly and often you develop nasty ulcers I would be careful with juices. Avoid all citrus products (orange, grapefruit), pinapple, kiwi, strawberry and raw tomato. Favor apple, banana, grape, and superfruits and vegetables. In soups (heated the molecules are altered and acidity disappears) acidifying products like tomatoes are fine.
    I would also support others’ advice on considering medication. Anti-tnf alpha, once you find the one that works for you and that you tolerate fine, it is a LIFE-CHANGER. I have a sever form like you, when it started 4 years ago it affected spine, hips but also all my joints, legs and arms, but also ribcage. I know the feeling, you can’t walk, lift your arms, use your hands to cook or write, get in the bathtub, wash your hair, even breathing hurts cause of ribcage, you lose centimeters of your height in months cause you crinkle and shrink like a raisin, even eating is hard when it touches your jaw… I now have, once I’ve found the anti-tnf alpha that works for me, almost completely recovered my mobility and have an almost pain-free/manageable life back. I do have bad days still when I have to use a walking stick or take a few painkillers, but hey, this is a very decent life comparing to what I experienced and you seem to undergo.
    I’m aware from patient forums and my own experience (I’m half-SPanish and also lived there as well as in UK) that I am blessed to have the French healthcare system that gives me free (taken care of by state healthcare) access to this high-tech new medication that is outrageously expensive, just the injections are between 1000 and 3000 euros/dollars a month. I know that in some countries people cannot even have access to those cut-edge drugs cause they’re not approved by authorities, too recent, too expensive… I have a worrying vision of US healthcare dramas through TV series, I sincerely hope you have a decent healthcare insurance and that, considering your age and how much the society loses if you are not able to live and work normally, access to these drugs will be facilitated to you. Do fight and seek help to try them, it could change your life. Some people take it a few years, then stop to have a baby as you probably plan with your future hubbie, and the inflammatory state may not come back after pregnancy. Inflammatory flares are unpredictible depending on each person, you may not need to take medication again, who knows. Right now and until now, you’ve been in so much suffering, pain, disabilities, fatigue, you DESERVE to recover a decent quality of life to start your life as a woman, enjoy marriage and pursue your chosen career.
    best wishes from France, Simone,
    (my late French granny was called Simone, bless her)
    I wish you a fantastic Xmas and a new better life in 2014, bless your marriage and the support of your man, it is invaluable to have your relatives and friends on board
    kindly
    Ana

  7. Simome
    I was diagnosed with Ibs as well as soon as i cut dairy out i never have issues anymore. I also eat plant based and anti inflammatory as much as possible, take pro biotics and drink as much water as i can. Don’t give up we all struggle judt have to keep moving forward!!
    Jesica #1107

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