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A devastating, intensely painful daily, crippling inside & out, rare disease! Effects your major organs, fuses your joints, starting with your spine and so much more!!!!

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bitter103sweet and 12 others like this

28 Comments

macsgal2010 @jjbunnycakes THANK YOU FOR SHARING THIS! 💖💖💖

May 19Reply

jjbunnycakes @macsgal2010 you are very welcome!!

May 20Reply

macsgal2010 @mjbp thank you for all the shares! 💖 Very much appreciated! 💖💖💖💖

May 31Reply

mz_heatherlynn @macsgal2010 My dad has this disease and has been effected by it since 1976 he has 2 hip replacements, he has went from 6ft 2" to the last good measurement was 5ft 4" I have watched him decline over the years and it is heart wrenching, I will put you in my prayers I'm not sure where this disease goes or what is next but I don't know if he will manage getting worse.

Jun 14Reply

macsgal2010 @tennesseegal74 I feel A.S. is as hard on our loved ones as it is on us only in different ways! Has your dad tried chemo? Have you been tested for the gene? Its known as a mans disease but fathers can pass it to their daughters. That's how it was passed to me. Each of us follows a different journey, that's one of the reasons its so difficult to diagnose & treat.

Jun 14Reply

macsgal2010 @tennesseegal74 Except for the end of the disease...we are all the same then! 😥 is your dad a member of Faces of Ankylosing Spondylitis? If not...google it. Its a great source of information & support. Please keep in touch with me. FB, if you wish, Lucy Staub-Helwig my prayers are with you & your dad hun!

Jun 14Reply

mz_heatherlynn @macsgal2010 I have been tested and thus far I'm OK. He has never tried chemo for it I don't think that has ever been mentioned to him he takes embrel once a week but that just makes the pain bearable and that seems not to be working anymore. I know that it is a very ugly ugly disease and I'm not sure how much more it can do to him honestly.

Jun 14Reply

macsgal2010 @tennesseegal74 have they tested you for the gene HBL27? If the embrel is not working, have him ask about Remicade. I go once a month for a little more then 2 hours. They add a type of chemo to the Remicade. It took about 8 months but i finally notice a difference. I have many many other medical issues due to the A.S. it has attacked every vital organ except one lung! The chemo is to hopefully slow the progression of the disease.

Jun 14Reply

macsgal2010 @tennesseegal74 I'm also starting with a new specialist called an Intensivist...they treat critically ill patients in& out of the hospital. Instead of having 28 different doctors I'm praying to knock it down to 4 or 5 with the inntensivist taking care of everything else. If you've not been tested for the gene...please think about it. Also have your dad talk with his Rhumey about Remicaide. ❤

Jun 14Reply

koshik Hi Lucy! So very sorry to hear of your struggles. My cousin had AS as well, but you seem to be having a harder time. I read through some of your posts, you're a doll! I wish you much peace, happiness and health. Good luck to you!

Jun 17Reply

macsgal2010 @Kozhikode thank you very much! I wasn't diagnosed until I was 48. That has made a huge difference in my journey with A.S. plus it has attacked every organ except one lung. I also have Rheumatoid Arthritis, Osteoarthritis & one other arthritis...cant remember the name. It has made life a bit difficult but I am blessed...there are 5hose who are much further in their journey than I am. How is your cousin doing? Thank you again for the kind thoughts! ❤❤❤❤

Jun 17Reply

koshik He passed away about 4 years ago, but at the incredible age of 95! I hope the intensivist has the answer to many of your chronic issues. Medicine keeps getting better and better! xxx,ooo......

Jun 17Reply

katzkoz Bless Ur heart! So sorry U have to deal with all of this. Hopefully U have a great support team around U. Helps a lot when people around U understand what Ur going thru. Bless Ur heart!

Jun 28Reply

macsgal2010 @katzkoz Thank you darlin' for thinking of me! 😘 Do you know of this disease? You sound as if you might.I get excited when I find someone who does.There's no one around me,its nice to have someone who understands to talk to! I certainly would not wish this on anyone but when I do find someone who really gets what I'm saying & can share all of their experiences with me as well...I don't feel so alone! Thank you so much either way! Peace, Love, Happiness & Health to you & all your loved ones! 💖

Jun 28Reply

katzkoz @macsgal2010 Yes, my brother is a Doc. & was 1 of 2 that was awarded a fellowship for his work. I knew of it from him & how painful it is. All I can compare it to is my RA. All the Docs told me I didn't have it. I KNEW I had it! Its MY body! FINALLY, got a new, young woman specialist who detected it EARLY! I have it. (Not my bros spec.) So, my pain is none compared to Urs....except...when its going to rain. Feel like my grandmother telling me those stories!

Jun 28Reply

jackies1331 Stay strong 🙏

Jul 13Reply

tivnefashion @macsgal2010 sending prayers your way! I've never heard of your illness but it sounds horrible. My sister just passed away in April from complications of a bonemarrow transplant. I saw her go through terrible pain. I will definitely keep you in my prayers!!! ❤❤

Jul 18Reply

bicycle_belle I had never heard of this disease before- thank you for sharing your struggle with us. It truly deepens the meaning of your words that we should be grateful for everyday we have with friends and family. Thank you for encouraging positivity in both our words and actions. I hope you have a wonderful day! 🌺

Jul 30Reply

antonetteo @macsgal2010 Hi there. I have this😒. It's affecting my spine badly. I've had 3 spine surgeries. The last one was ACDF(cervical fusion) with titanium plates as well on 5 discs. They are doing a lumbar fusion soon because they are trying to stay ahead of my spine fusing on its own. It sucks and it really hurts. I'm 40 and it really has impacted my life. I hope you're okay. Hang in there

Aug 19Reply

macsgal2010 @antonetteo your Rheumatologist was okay with the surgery? They say surgery is the worst thing to do. It can cause so many other problems! I pray you're well! All of my major organs have been effected except for my left lung. I've been on chemo a little over a year now in hopes that it will slow the progression of the disease! I will be on chemo the rest of my life.

Aug 19Reply

macsgal2010 @antonetteo I have many other "sub" diseases as I call them. I despise that you have this horrific disease but it is nice to meet someone who understands! 😘💖

Aug 19Reply

antonetteo @macsgal2010 I was just diagnosed!! My great grandfather had it, but back then they didn't know. My parents told me about it and now we are just learning about this!! I have a rheumatologist, neurosurgeons, Psyiatrist, and two other MDs. They thought it was lupus and I am being sent to another specialist to find out just what the heck is going on!! .

Aug 19Reply

antonetteo @macsgal2010 Very confusing. I'm in so much pain, it's like the surgeries didn't even work😠😔☹️ I hope I will know more when I see my rheumatologist in a few weeks. This is horrifying!! I'm scared. And I am forgetful too. I don't know if that is part of it, but I don't take meds that would do that!!?? I am going to learn more soon. I'm a newbie at this.

Aug 19Reply

antonetteo @macsgal2010 I had no idea how bad this can be. I'm just learning. I see the rheumatologist soon. I'm not sure where my path is headed!! I'm scared. I hope you are doing okay. I thought it just attacked your spine. No wonder why I have to see all these specialists!! Nice to meet you and I'll be thinking about you.🙏

Aug 19Reply

macsgal2010 @antonetteo there is a lot more. Go to: spondylitisassociationofamerica.org There is soooo much information there. If you're on facebook...there are a few very good private support group. You're welcomed to look me up. Lucy Staub-Helwig. If you have any questions and/or concerns, please reach out to me! I'll help you as much as I can. If you don't mind, I'll keep you in my prayers! 😘💖

Aug 19Reply

antonetteo @macsgal2010 Thank you so much. Same here🙏. Keep me posted how you're doing from time to time.❤️💐Thank you for the info

Aug 19Reply

bitter103sweet Hi Lucy! You are a strong woman may God continue to bless and keep you as you fight this disease. Take care of yourself. God Bless You ❤️

Feb 02Reply

macsgal2010 @henriettastore Hello…I went to purchase a few pairs of shoes from you & can’t. Why do you not want me purchasing from you? 😞

Feb 29Reply