living life to the fullest with AS
AS has my body, and NOT me!
I usually end with this, but today It's going to be the beginning!! I'm still dealing with the "healing process" from the anterior cervical discectomy and fusion. I still struggle with the feeling of something in my throat! I'm continually learning more and more about this horrible disease! It would be much easier if it just affected one part of my body!! NOPE! Instead AS just continually gets more and more of me!
Since my last post, we've had some exciting family events. My youngest got married to a Coast Guardsman who we love! This 2nd son in our family is a perfect addition. Thankfully they aren't stationed too far away either! I'm that mom that would love her family to just all live on the same property LOL! The wedding was beautiful! Thankfullly AS didn't rear it's ugly head until the day after--and when it did--WHOA! Talk about the worst day EVERRRRRRR! Literally thought I was going to die! Thankful for my family and friends who took care of the departure details (destination wedding) but most importantly took care of me!
My current AS regimine. I'm still on Cosentyx injections (I actually do 1 150 shot every other week). I've added weekly methotrexate injections as well. I ask myself all the time....is this working?! Of course there's tons more medications that are required for me to "do life". My eyes are still under attack by AS. Sometimes I just think...if the eyes and head didn't hurt, I think I could deal much better. Just at the time you think ok, I've got this, AS says...but wait! Let me attack, current addition for me-my elbow! Easy terms for all is it's called tennis-elbow, epcondylitis is the medical term. I've never played tennis in my life. I actually hadn't done anything to cause this joint irritation..it's called life with AS. I've had the cortisone injection, wearing braces to rest it and currently undergoing physical therapy. So, let's discuss this PT...I mention why I'm here, not an injury--I have AS. Well your DR wrote epcondylitis and that's muscle not AS/joint. People-I almost got up and left! it was all I could do to sit there and not speak my mind--you know NOTHING about AS. It's called inflammation!!!! Ugh! So, yea..enough about the elbow except to say..thank goodness I'm a lefty (it's the right elbow)!
It's so frustrating when you hear comments from healthcare providers that you know are just...well DUMB! If you "google" ankylosing spondylits you read it's in the spine and starts in the hips..over and over...but even this is really not true! For some AS folks, especially women, other joints are more involved than the spine/hips.
Things I've learned about MY AS--my eyes are horrific, seems my right side is a mess-my knee, shoulder and now elbow, I have terrible migraines, neck fusion/pain, that AS has caused inflammation in my vocal chords and around my vocal box---yes, my "back hurts"--but those things listed before the back hurt worse! So--it would really be good if correct information was out there for folks to read.
So let me just end with AS has my body, but NOT me because I'm NOT going to just sit in my house and let this disease own me. NOPE! My 1st grandchild will be here any day!!! I'm going to BE that grand mom! So, AS this Mo (grand mom name) is not letting you win! Lilly already has my heart!
I usually end with this, but today It's going to be the beginning!! I'm still dealing with the "healing process" from the anterior cervical discectomy and fusion. I still struggle with the feeling of something in my throat! I'm continually learning more and more about this horrible disease! It would be much easier if it just affected one part of my body!! NOPE! Instead AS just continually gets more and more of me!
Since my last post, we've had some exciting family events. My youngest got married to a Coast Guardsman who we love! This 2nd son in our family is a perfect addition. Thankfully they aren't stationed too far away either! I'm that mom that would love her family to just all live on the same property LOL! The wedding was beautiful! Thankfullly AS didn't rear it's ugly head until the day after--and when it did--WHOA! Talk about the worst day EVERRRRRRR! Literally thought I was going to die! Thankful for my family and friends who took care of the departure details (destination wedding) but most importantly took care of me!
My current AS regimine. I'm still on Cosentyx injections (I actually do 1 150 shot every other week). I've added weekly methotrexate injections as well. I ask myself all the time....is this working?! Of course there's tons more medications that are required for me to "do life". My eyes are still under attack by AS. Sometimes I just think...if the eyes and head didn't hurt, I think I could deal much better. Just at the time you think ok, I've got this, AS says...but wait! Let me attack, current addition for me-my elbow! Easy terms for all is it's called tennis-elbow, epcondylitis is the medical term. I've never played tennis in my life. I actually hadn't done anything to cause this joint irritation..it's called life with AS. I've had the cortisone injection, wearing braces to rest it and currently undergoing physical therapy. So, let's discuss this PT...I mention why I'm here, not an injury--I have AS. Well your DR wrote epcondylitis and that's muscle not AS/joint. People-I almost got up and left! it was all I could do to sit there and not speak my mind--you know NOTHING about AS. It's called inflammation!!!! Ugh! So, yea..enough about the elbow except to say..thank goodness I'm a lefty (it's the right elbow)!
It's so frustrating when you hear comments from healthcare providers that you know are just...well DUMB! If you "google" ankylosing spondylits you read it's in the spine and starts in the hips..over and over...but even this is really not true! For some AS folks, especially women, other joints are more involved than the spine/hips.
Things I've learned about MY AS--my eyes are horrific, seems my right side is a mess-my knee, shoulder and now elbow, I have terrible migraines, neck fusion/pain, that AS has caused inflammation in my vocal chords and around my vocal box---yes, my "back hurts"--but those things listed before the back hurt worse! So--it would really be good if correct information was out there for folks to read.
So let me just end with AS has my body, but NOT me because I'm NOT going to just sit in my house and let this disease own me. NOPE! My 1st grandchild will be here any day!!! I'm going to BE that grand mom! So, AS this Mo (grand mom name) is not letting you win! Lilly already has my heart!
Thanks for your post! I am much like you! Looking back- I have prob had AS from a very young age but was treated for "growing pains" as a young teen. Had an ulcer at 14 (GI issues) and have been wearing glasses since the age of 5. I have the MOST amazing Rhuematologist that has allowed to STOP my meds ( which I by no means recommend for others as it was by my choice). I am a young "Mimi" of 6 beautiful grandbabies and am still a very thriving and hard working American. I love my profession in the dental field even though it is torture on posture and pain! AS is a disease that many people have a hard time "wrapping" their brains around. Of course mine is exaggerated by Fibromyalgia as well. One day is good, and the next 3 may be hell but I push through it! I have learned that 'STRESS" is my #1 inducer. At just shy of 50, I am finding it harder and harder to find the balance? Any suggestions that work best for you ( MINUS Biological meds)????? Thanks for making me feel as though I am not alone! :)
ReplyDeleteHello sorry for the delated reply....I don’t know of anything that would help the disease if you aren’t managing it with meds. I do know that even on the biological meds, I still have to have “down days” where I rest. I suggest talking with your rheumy and get on some type of protocol that will manage the AS.
DeleteA big thanks to Dr James for reserving my ALS disease with his effective herbal formula. I was diagnosed of ALS disease 5 months ago of all the horrible experience, I was bitterly in pains. My symptoms progressed so fast that I couldn't eat proper, walk, work, breath well, it was my worse part of life then. On this fateful day, I came across a post just like this concerning a patient who used Dr James herbal medicine herbal formula to reserve her ALS disease for over 4 years now. I was skeptical about it but I had no choice than to also contact this dr James I visited his blog site and made my orders. To cut it short, I used the herbal formula for six weeks as instructed and today makes it 7 months without no symptoms. I am also making my testimony about this miraculous did. I have been given 3 years ALS disease reserved guarantee after which i will make another purchase for another 3 years span again. Thank you very much dr James. For those who needs help, you can reach him via email on jamesherbalformula@gmail.com or WhatsApp number: +2348102574680 . Let's share this and help everyone. Don't judge until you give it a try
DeleteHi, My Rheumatologist thinks I have AS. I just had a disc partially dislocate which caused me to not be able to walk without my cane! I ditched that thing 3 years ago I thought. I also have Ehler-Danlos, celiac, sjogrens. My X-ray came back with degenerative disc disease in my spine. But I have other joints that hurt.
ReplyDeleteMy Dr is getting the testing process started next week. I know there is a genetic test. But not sure if there are others. Anyway, any advice you may have would be great! BTW I am 44. Just graduated college and cannot work now. :(
The genetic marker is HLA-B27 for AS but just because you have this or not doesn’t mean you’ll have AS. It is one of the markers they look for when other signs are present. Autoimmunes cross over so much in symptoms it’s so hard to finally figure out what exactly it is you have. I hope that your DR figures this out and you get on the proper treatment for your diesease. I also can not work and thankfully my husband can provide. I have to have those “down/rest days” weekly just to keep my disease managable.
DeleteA big thanks to Dr James for reserving my ALS disease with his effective herbal formula. I was diagnosed of ALS disease 5 months ago of all the horrible experience, I was bitterly in pains. My symptoms progressed so fast that I couldn't eat proper, walk, work, breath well, it was my worse part of life then. On this fateful day, I came across a post just like this concerning a patient who used Dr James herbal medicine herbal formula to reserve her ALS disease for over 4 years now. I was skeptical about it but I had no choice than to also contact this dr James I visited his blog site and made my orders. To cut it short, I used the herbal formula for six weeks as instructed and today makes it 7 months without no symptoms. I am also making my testimony about this miraculous did. I have been given 3 years ALS disease reserved guarantee after which i will make another purchase for another 3 years span again. Thank you very much dr James. For those who needs help, you can reach him via email on jamesherbalformula@gmail.com or WhatsApp number: +2348102574680 . Let's share this and help everyone. Don't judge until you give it a try
ReplyDelete