Showing posts with label USA: South Carolina. Show all posts
Showing posts with label USA: South Carolina. Show all posts
Wednesday, April 24, 2019
Sunday, April 14, 2019
A.S. Face 2093: Dr. Brad Aspey
A.S. Face 2093: Dr. Brad Aspey
I decided to write this today after trying yoga for the second time. As I looked around the room watching the other beginner “Yogis” doing the relatively easy movements and positions that I was struggling so hard to do, I noticed a significant difference between myself and others who physically looked just like me before the start of the class. Ankylosing spondylitis is commonly called “an invisible disease,” but today this disease finally became very visible to me. Today, a full eight years after having received the diagnosis, I came to the realization, and I guess acceptance, that I REALLY DO HAVE ANKYLOSING SPONDYLITIS.
I am writing this for a couple reasons. Selfishly it is therapeutic for me, but also, and most importantly, I want to tell others (patients, family members, friends, coworkers, doctors) about ankylosing spondylitis to help others get the correct diagnosis sooner. The average person with AS is undiagnosed, or misdiagnosed for 7 years, and sees an average of 5-6 doctors before receiving the correct diagnosis, which is why it is important to help raise awareness about this disease that affects so many people. Even if one person takes the time to learn a bit more about AS, then making myself vulnerable and putting this story “out there” (which I have never done before) has been well worth it.
I guess I have superficially known that I have ankylosing spondylitis since around 2010 when I was a second year Orthopaedic Surgery resident, but to be honest, I have been in complete denial about this disease. In the beginning, my symptoms were relatively mild, and I think this allowed me to remain in denial for much longer than I should have. I thought, “What is the big deal?” I knew from what I remembered learning about ankylosing spondylitis in medical school that I will have some SI joint pain and some back stiffness. I thought, “No big deal; I could easily handle this. Piece of cake . . .”
I convinced myself that this disease was like having a sports injury and I could just push through the pain. I did not tell anyone that I had the disease except for my wife. I was worried about being seen as less capable or as having a weakness in my physically demanding work as an Orthopaedic Surgeon. I also didn’t want it to affect my personal life with family and friends. I was definitely not ready to truly educate myself, my family, my friends, or coworkers about the disease, or take an active role in trying to manage it. I have been a very ‘type A’ personality my entire life – always striving for perfection, setting ambitious goals, and never admitting to weakness or limitations, always thinking I could do anything.
However, after having lived with this disease for almost eight years, I am just now starting to come out of denial. Ankylosing spondylitis has finally forced me to do more than try to ignore it. I have finally started to educate myself, family members, friends, and coworkers about this disease, and admit to my limitations and weaknesses.
I have learned painfully that AS is much more than just SI joint pain and stiffness. It is very much a systemic disease that can affect almost every organ system you can think of.
I am just starting to learn now that you CANNOT CONTROL THIS DISEASE, YOU CANNOT GET RID OF THIS DISEASE, BUT YOU CAN TAKE AN ACTIVE AND POSITIVE ROLE in how you MANAGE THE DISEASE, and still LIVE A VERY HAPPY AND PRODUCTIVE LIFE. I am finally seeing a rheumatologist regularly, taking the appropriate medications, making healthy lifestyle changes like doing yoga, taking time to stretch and doing posture exercises; I’m also eating healthier. Even with all these things, I have also come to the realization and acceptance that I will still have flare-ups and progressive limitations with this disease that I cannot control. I know I have a very long path ahead of me living with this disease for the rest of my life, but I am ready to take it on.
I came across the term “living an AS-adjusted life” from the This AS Life Live online video series and website and it really stood out and has made an impact on me. Living an AS adjusted life can mean different things to different people. To me, it means that while AS may cause you to lose the ability to do some things, you can hopefully feel that you have also gained many positive things due to having ankylosing spondylitis.
South Carolina, United States of America
I decided to write this today after trying yoga for the second time. As I looked around the room watching the other beginner “Yogis” doing the relatively easy movements and positions that I was struggling so hard to do, I noticed a significant difference between myself and others who physically looked just like me before the start of the class. Ankylosing spondylitis is commonly called “an invisible disease,” but today this disease finally became very visible to me. Today, a full eight years after having received the diagnosis, I came to the realization, and I guess acceptance, that I REALLY DO HAVE ANKYLOSING SPONDYLITIS.
I am writing this for a couple reasons. Selfishly it is therapeutic for me, but also, and most importantly, I want to tell others (patients, family members, friends, coworkers, doctors) about ankylosing spondylitis to help others get the correct diagnosis sooner. The average person with AS is undiagnosed, or misdiagnosed for 7 years, and sees an average of 5-6 doctors before receiving the correct diagnosis, which is why it is important to help raise awareness about this disease that affects so many people. Even if one person takes the time to learn a bit more about AS, then making myself vulnerable and putting this story “out there” (which I have never done before) has been well worth it.
I guess I have superficially known that I have ankylosing spondylitis since around 2010 when I was a second year Orthopaedic Surgery resident, but to be honest, I have been in complete denial about this disease. In the beginning, my symptoms were relatively mild, and I think this allowed me to remain in denial for much longer than I should have. I thought, “What is the big deal?” I knew from what I remembered learning about ankylosing spondylitis in medical school that I will have some SI joint pain and some back stiffness. I thought, “No big deal; I could easily handle this. Piece of cake . . .”
I convinced myself that this disease was like having a sports injury and I could just push through the pain. I did not tell anyone that I had the disease except for my wife. I was worried about being seen as less capable or as having a weakness in my physically demanding work as an Orthopaedic Surgeon. I also didn’t want it to affect my personal life with family and friends. I was definitely not ready to truly educate myself, my family, my friends, or coworkers about the disease, or take an active role in trying to manage it. I have been a very ‘type A’ personality my entire life – always striving for perfection, setting ambitious goals, and never admitting to weakness or limitations, always thinking I could do anything.
However, after having lived with this disease for almost eight years, I am just now starting to come out of denial. Ankylosing spondylitis has finally forced me to do more than try to ignore it. I have finally started to educate myself, family members, friends, and coworkers about this disease, and admit to my limitations and weaknesses.
I have learned painfully that AS is much more than just SI joint pain and stiffness. It is very much a systemic disease that can affect almost every organ system you can think of.
I am just starting to learn now that you CANNOT CONTROL THIS DISEASE, YOU CANNOT GET RID OF THIS DISEASE, BUT YOU CAN TAKE AN ACTIVE AND POSITIVE ROLE in how you MANAGE THE DISEASE, and still LIVE A VERY HAPPY AND PRODUCTIVE LIFE. I am finally seeing a rheumatologist regularly, taking the appropriate medications, making healthy lifestyle changes like doing yoga, taking time to stretch and doing posture exercises; I’m also eating healthier. Even with all these things, I have also come to the realization and acceptance that I will still have flare-ups and progressive limitations with this disease that I cannot control. I know I have a very long path ahead of me living with this disease for the rest of my life, but I am ready to take it on.
I came across the term “living an AS-adjusted life” from the This AS Life Live online video series and website and it really stood out and has made an impact on me. Living an AS adjusted life can mean different things to different people. To me, it means that while AS may cause you to lose the ability to do some things, you can hopefully feel that you have also gained many positive things due to having ankylosing spondylitis.
South Carolina, United States of America
Sunday, April 22, 2018
A.S. Face 2087: Jen Johnson-Crosby
A.S. Face 2087: Jen Johnson-Crosby
Many of you may or may not know about the medical issues that have been going on within my body. They have changed my life in so many ways.
I am an LCH WARRIOR and AS FIGHTER.
It first started with the doctors removing a cancer cell (LCH) from my left eye.
After all the pathology test the diagnoses were correct and given to me just before the 2015 New Years. I thought, what a great way to start the year! Off with a bang! After several bone scans and PET scans later, it was determined that there was also a few spots on my lung.
They were very small, but there. Over the next year, I would be in and out of doctors offices. Between the Oncologist, Neurologist, and primary doctor it was ridiculous.
Let’s talk about this nasty stuff!!!
And when not at the doctor I had everyday duties: work, home, man-child husband, and two boys that keep you on your feet! I was basically working to pay the doctors. And eventually stopped working in May 2016. That was hard as I had always been employed since the age of 16. I just couldn’t do it anymore. I screwed on my smile each day and would tell everyone, I am fine. But in fact, I would come home after work and cry because of all the pain my body was in. My husband has been helpful at times. But he doesn’t understand as the disease is hidden within my body. I may look normal(sometimes) on the outside, but my insides are fighting two gnarly autoimmune diseases. ( I will get to the other soon). Time with my boys is limited, which leads to more snuggle time when we where all home than running around playing. Not sure if I can complain about that!! But at the same time, I felt like I missed some of their biggest milestones. I would go to a soccer game or t-ball game and feel as if I had just run a 5k marathon. My legs, back, hips, fingers, and toes throbbed with pain and then you have the forever burning pins and needles feeling in the hands and feet as well. So after much complaining to my doctors as to why no improvements and pain worsening, they couldn’t give me a good reason as to what was eating me. So I called MD Anderson (the Mac daddy cancer hospital in the States)! They were so helpful!! So after a list of blood test, more scans, and a referral to my newest “ologist “! My medical team believed they had found the right answer!
December 2016 I was also diagnosed with AS (Ankylosing spondylitis )To my doctors’ dismay, I read as many articles as my eyes would let me. It all started to add up! All the pain, fatigue, tingling and even the troubles with my vision. It all started to make sense. A little insight: after the LCH cell was removed my vision was horrible, everything was blurry and the sensitivity to bright lights was insane. So much that I didn’t even drive at night. The lights from the oncoming cars were blinding! But I assumed it was permanent damage from the LCH cell. I was wrong!
I now have an amazing medical team, with hopes of a new normal for me and my family soon. As I start my new journey I hope to find some relief and comfort. I have been doing PT for over a month, I take 5 pills each morning and 3 at night, And I give my self an injection twice a month. Which will most likely increase? I take schedule II narcotics when the pain is unbearable. Unfortunately, I have had to take more than I would like this past month. I try to push myself as if nothing was wrong, but then I suffer tremendously and it will take days just to feel relief.
The darkness I have felt, no one should have to feel. I have suffered from indescribable pain for at least 3 years. Or at least this is when I can remember the pain starting to creep through my body. I felt like something was sucking the life out of me or eating me live. My hands and feet feel like a million tiny needles are poking me all day and night. My fingers and toes would look like sausages. Sometimes I would tell Scott, “my toes are going to explode”. I will drop things out of my hand, it’s like duh you can hold something! My knees will pop out of joint. On a good day, I can pop it right back in! My hips feel as if I am caring ten-pound weights on each side with someone punching me in the middle (around SI joint) of my lower back. I would fall for no apparent reason. My legs had/ have huge bruises from a small bump or fall. It’s crazy! I could keep going on and on with random side effects. I was slowly giving up on me mentally.
*as I write 12/7/16 the Imagine Dragons song Radioactive just came on! I would listen to this song before every scan to get my adrenaline going. And I was also Radioactive ☠☠ Another song that reaches out is Unsteady (X Ambassador) never know what these legs will do.
During this process, I have learned who my true friends are. This journey has truly shown me the true sides of people. Several have become a ghost in my life. I am just happy I know if someone needed anything I would do whatever was in my power to help. Should it be a phone call, a visit, a text, something, anything. But like I said, I know who will always be by my side. As my journey to the new normal begins, there will be no half sided, non caring fake friends in my court! The rest can kiss my ass!!! Really, kiss it!! My sister is my ride or die. She checks in every day and has been with me for most scans and some appointments! Love you KJ
My husband Scott can’t support me in a proper manner, because he can’t see any physical alignment/ injury yet( AS can cause deformities in the spine and other joints). He only see’s doctor bills, me not getting better, more appointments, and more scans. He see’s me laying on the couch an has called me “lazy”. I am just into much pain, so I lay there. His lack of attention hurts, which adds more fuel to the fire and stresses me out on the inside. I can’t really even talk to him about all that I feel or what the doctors have said. I sing to him ” I am so lonely” and ” All by myself”. He laughs and says I’m not, but this is how I feel.
I am optimistic about the future and will remain with this outlook until some improvements begin. I will still be doing imaging every 6 months to see the progression of the AS. Not sure how long PT will continue! My team and I literally take it week by week until we reach some level of improvement. I have told myself I will not give up and try my best each and every day to keep moving!! Just putting one foot in front of the other! Or another thing I sing “Just keep swimming, Just keep swimming”
Daily Notes 12/12/16
Well, we start another week off at the doctor’s office. Reviewing scans and adjusting meds. I am curious as to what the latest MRI shows. As always before I left, I asked Scott several times if he would go with me. And as always it’s the same answer. NO. I just want to scream at him!
This past weekend was rough. I woke up Sunday morning with a new pain, right underneath my shoulder blades. In all this time I have been on Norco, I have never woken wanting to take them. I did on this morning. So we tried the natural way first: took all my anti-inflammatory, did my stretches, pain still had no improvement. So I started my day off with a narcotic. Great way to start the day. NOT! Eventually, by the evening, the new pain was gone and the normal pains is all I felt.
The Journey
12/28/16: This morning started with my meds, then off to PT I went. I had been a bit concerned because of the bruising in my legs, so I showed her 1 of the many! BP was up, so she insisted that I call Pappa when I left. Today is also injection day! (3rd round) So after a few calls, I have been given the green light to do my injection! Oh but wait, we have a follow up with neuro today as well! So I am patiently waiting to see Baha….. Blah—–it is only 1:00. Blah–
I haven’t been updating this as much as I like, but a lot has happened since the last entry!!
Jan. 18, 2017 ~ On New Years I decided to actually make a resolution: move more each day! So the plan was to at least get a mile walk in each day! It took me a few days to figure out my route around the neighborhood, but I got it down! I noticed that each day my body would have less pain. Still there but not as intense. The only downside is when I stop ✋ for the day my legs would literally be pulsating with pain. I am still trying to push myself each day to continue with this resolution, even started wearing my FIT BIT again. I believe the goals I have set for each day are a good start. PT is on board with me walking so much that I pushed myself to 2 miles!! I am trying so hard to get me back to me!
My family did receive the best gift from God and she came at the perfect time! I am an Aunt x 4 now! Welcome to the world Miss Hunleigh You are beyond beautiful 1/16/17 4lbs 10oz
But the one I should be able to count on the most is not there, thanks, Scott. Thanks for your lack of, in every department. Especially the last few days. You are draining what life I have left. In our vows, we said, ” For better or Worse and in Sickness and in Health”. You have let me down. * before I go on a rampage, let me go on my walk
Jan. 23, 2017
Well, I have started the week with a follow up with Pappa…Unfortunately, this visit is one with a lot of emotions. On 1/12 I experienced the most unbelievable pain in my abdomen… by the end of the night, I looked 9 months pregnant! In the days that followed, I have had severe abdominal pain and my BM are so nasty and painful. This is also followed by vaginal bleeding and a sharp pain in what I am saying is my ovary area. I am experiencing shortness of breath just after eating. Pain across my shoulder blades. The past few weeks have been so hard. And as always Scott is an unsupportive spouse. He truly is a dick. I don’t even like talking to him anymore because he is so negative. Thanks for the support and hand-holding NOT
Well, they suggest an urgent appt. with GYN (of course, my guy is off this week) and if nothing is found I start the whole GI doctor process. WTF…I actually broke down in the doctors’ office today. And now trying to patiently wait for a return call. GYN tomorrow @12 w/ Frampton. Well he suggested to meet with his partner (my normal gyn) for surgical consult to remove what is left of my lady parts and another lapi….. No surgery we will try the depo shot again and re-evaluate 3 months! Dr. Simmons is the best! Leaving the rest of my lady parts in! But I should have a GI check up…..Its never good, but at least no one is saying surgery at this very moment!
February 14, 2017 HAPPY VALENTINES DAY ❤ But could you believe I am sitting waiting to meet the GI doctor. Happy V day to me, NOT. And as always I am alone. Scott is doing whatever and has Jack duty! Karen has Hunleigh to take care of so not much sissy time. At least we talk several times a day and night calls!! But back to the point~ and this will make you laugh!
Only I can be dumb enough to try some new cream on my face ( trying to make me feel better about myself and appearance) and screw up big time ~
While yours truly now has chemical burns on her face!! My dermatologist is probably still laughing today!! UNBELIEVABLE (smh at myself) So needless to say no plans for V day! Except for this date with the GI doc, oh how exciting I am slightly amused as to how this appointment will go~ sorry no one and I mean no one is going in my back door unless I am knocked out Maybe I should wish the doctor luck.The nurse is not very warm, but hey if I had to deal with what come out of a human body, I wouldn’t probably be either!!
Feb. 23,2017
Completed a Colonoscopy and a Endoscopy. A few polyps removed but no IBD. Dr. B made me feel like I had a crazy disease, right before I was put to sleep he said, “Mrs. Crosby is HLA-B27 +”. For the first time I felt like I had some horrible contagious disease. Butthole(no pun intended ) The procedure itself wasn’t bad at all. It’s was the day before that killed me. I kept saying to myself ” This is where the doctors send you when, they don’t like you anymore!” I will never look at Gatorade the same again.
Today I also received a call from a different PT facility. Weird, considering Pappa wouldn’t sign off on Sports Spine Tracey renewal. So on Friday, I meet the new PT team.
March 3, 2017
I feel like I have been demoted. The new PT place looks like a shit hole. It makes Sport Spine look like a Cadillac. The guy Matt S. is asking way too many questions. But I also understand. He also says I will have a six packs for abs once they are finished. I call BS. Tracey said the same thing. I can definitely feel the difference between the 2 therapists. Tracey went lite on me. This new guy is hard core and way to perky. My back, legs, and shoulders are sore in places I didn’t even know could be sore.
March 8, 2017
Follow with Pappa. New meds this time an infusion of Remicade……Not sure how I feel. But the AS has to be stopped and go into remission. GOING HARD CORE
March 31, 2017
It’s has been a few weeks since my first infusion. This stuff might ACTUALLY be working. I have noticed less pain days!!!PT has been tolerable! And with Scott being down from knee surgery, this couldn’t have come at better time!! I was even able to plant some flowers with Jackson ( my sweet honey ). Second infusion is next week! Keeping my fingers crossed that this could be the answer!!
*Since I have been forgetting to update this as much as I would like….thinking of switching to Photo Journals. Just a thought. Still
We spent spring break at the beach house! Had a blast! And I sure did enjoy morning walks with Jackson
4/27/2017- it’s been a few weeks since I joined the gym! Jack loves the kid Fitness Zone…Mikey even came along today!! If we could only get Scott to go🏃🏻
Round 3…with adjustments! 5.2.17
Well 6.20.17 I should have been going to Round4 but at the check up appointment before hand I had a fever of 99.8. No infusion…Pappa wants a chest X-ray to make sure my respiratory infection didn’t turn into something worse! So Thursday morning I called to check in and the nurse stated: X-rays are good but your liver is producing enzymes in your blood. And I was clear to get my next infusion! If it not one thing is another! Not sure if I have said this but thank you mom and sperm donor Joe for the bad breeding!
9.5.17
Last day in the INF clinic!!! We are moving on to self-administrated shots….time for another MRI and depending on that it could be a trip to the Mayo Clinic. I have stated I will be your experiment but just fix me! To date, we have been doing the most invasive treatment….with barely any improvement. So a plan B is being created!
Yes I know, so glamorous! Late nights in out-patient scans are my thing! 😉But this scan on 9/14/17 showed minimal improvements!! Minimal or not I heard the word IMPROVEMENT! That was all I needed to hear. Hadn’t heard that from a doctor in several years.
Granted since I have stopped INF treatment all of the ” little” symptoms are back….the psoriasis is just awful. And my lord the pain has settled back in, all the time, all over my body, every joint, and excruciating. Give me my bio-logical meds back, please and thank you!
Happy Thanksgiving! 🦃🍁🍽 This year was oh so nice but sad at the same time. Mikey was with his father. Scott went to the farm to eat with his family. Jackson and I stayed home. Honey bee was sick. So we snuggled and watched the Parade on tv! Then I cooked at my pace: know it did take me all day to get a Thanksgiving dinner cooked (-dressing 😬). Food was great, but I really missed being with MY family.
The next week later:
Dr. Pappa also asked if I would be a part of the “Corrona Study”. Of course I agreed! Even if we can’t get me right, at least maybe with my help they will find something that works for the next generation!
Round 2 bing bing 🛎🛎 of non-INF clinical bio-logical meds: after a failed run on Embryel. (The bruising side effect was crazy. My legs looked like purple patches. Scott would just touch my leg and within hours his fingerprints would appear in the form of a bruise.)
So today I got my first shot of Celebrex. And was also sent home with an extra just in case the pharmacy is late. Which they all take their sweet time. So 4 more weekly shots then only monthly maintenance shot! November 28th appointment was okay, psoriasis has flared really bad, I presented more psoriatic arthritis symptoms than AS, lots of paperwork! As I have said before, I am pretty RARE and SPECIAL. As long as the new med works I am good to go and no return back to the Doc for 3 months! And no study stuff until May 2018!!! What shall I do with all my time?! Keeping my fingers crossed this works and I keep moving and improving!
Write in about falling and GI. 👍🏻
Feb 3: I am officially PISSED, MAD…..I am over it. I guess the Prozac is working for the emotional, depressed self. No more crying why me. I have to be able to do me! I need my life back. Ready for pain management, so much I have even looked into the Goldburge Clinic in Georgia. The testimonials are beyond spirit lifting! But Scott has snuffed at this and says we have no money for that. Disappointing ☹️ On top of that, it is a horrible pain evening as I did push myself beyond my limits. I am paying for it now. 🤬😤😡😬😢😖😟
Just did another round of x-Ray’s this time on my neck and shoulders as they have begun to hurt more and more. And of course, it’s showed osteoarthritis. Whatever. Fuck my body!
I will say, Andy, the Radiology Tech was so awesome he even let Jack help!!!
So I am 36 with arthritis eating my body from neck to toes. Osteoarthritis, AS, Psoriatic Arthritis, and HLA-B27 positive.
TO BE CONTINUED
Until the next entry: ✌💙💋
Many of you may or may not know about the medical issues that have been going on within my body. They have changed my life in so many ways.
I am an LCH WARRIOR and AS FIGHTER.
It first started with the doctors removing a cancer cell (LCH) from my left eye.
After all the pathology test the diagnoses were correct and given to me just before the 2015 New Years. I thought, what a great way to start the year! Off with a bang! After several bone scans and PET scans later, it was determined that there was also a few spots on my lung.
They were very small, but there. Over the next year, I would be in and out of doctors offices. Between the Oncologist, Neurologist, and primary doctor it was ridiculous.
Let’s talk about this nasty stuff!!!
And when not at the doctor I had everyday duties: work, home, man-child husband, and two boys that keep you on your feet! I was basically working to pay the doctors. And eventually stopped working in May 2016. That was hard as I had always been employed since the age of 16. I just couldn’t do it anymore. I screwed on my smile each day and would tell everyone, I am fine. But in fact, I would come home after work and cry because of all the pain my body was in. My husband has been helpful at times. But he doesn’t understand as the disease is hidden within my body. I may look normal(sometimes) on the outside, but my insides are fighting two gnarly autoimmune diseases. ( I will get to the other soon). Time with my boys is limited, which leads to more snuggle time when we where all home than running around playing. Not sure if I can complain about that!! But at the same time, I felt like I missed some of their biggest milestones. I would go to a soccer game or t-ball game and feel as if I had just run a 5k marathon. My legs, back, hips, fingers, and toes throbbed with pain and then you have the forever burning pins and needles feeling in the hands and feet as well. So after much complaining to my doctors as to why no improvements and pain worsening, they couldn’t give me a good reason as to what was eating me. So I called MD Anderson (the Mac daddy cancer hospital in the States)! They were so helpful!! So after a list of blood test, more scans, and a referral to my newest “ologist “! My medical team believed they had found the right answer!
December 2016 I was also diagnosed with AS (Ankylosing spondylitis )To my doctors’ dismay, I read as many articles as my eyes would let me. It all started to add up! All the pain, fatigue, tingling and even the troubles with my vision. It all started to make sense. A little insight: after the LCH cell was removed my vision was horrible, everything was blurry and the sensitivity to bright lights was insane. So much that I didn’t even drive at night. The lights from the oncoming cars were blinding! But I assumed it was permanent damage from the LCH cell. I was wrong!
I now have an amazing medical team, with hopes of a new normal for me and my family soon. As I start my new journey I hope to find some relief and comfort. I have been doing PT for over a month, I take 5 pills each morning and 3 at night, And I give my self an injection twice a month. Which will most likely increase? I take schedule II narcotics when the pain is unbearable. Unfortunately, I have had to take more than I would like this past month. I try to push myself as if nothing was wrong, but then I suffer tremendously and it will take days just to feel relief.
The darkness I have felt, no one should have to feel. I have suffered from indescribable pain for at least 3 years. Or at least this is when I can remember the pain starting to creep through my body. I felt like something was sucking the life out of me or eating me live. My hands and feet feel like a million tiny needles are poking me all day and night. My fingers and toes would look like sausages. Sometimes I would tell Scott, “my toes are going to explode”. I will drop things out of my hand, it’s like duh you can hold something! My knees will pop out of joint. On a good day, I can pop it right back in! My hips feel as if I am caring ten-pound weights on each side with someone punching me in the middle (around SI joint) of my lower back. I would fall for no apparent reason. My legs had/ have huge bruises from a small bump or fall. It’s crazy! I could keep going on and on with random side effects. I was slowly giving up on me mentally.
*as I write 12/7/16 the Imagine Dragons song Radioactive just came on! I would listen to this song before every scan to get my adrenaline going. And I was also Radioactive ☠☠ Another song that reaches out is Unsteady (X Ambassador) never know what these legs will do.
During this process, I have learned who my true friends are. This journey has truly shown me the true sides of people. Several have become a ghost in my life. I am just happy I know if someone needed anything I would do whatever was in my power to help. Should it be a phone call, a visit, a text, something, anything. But like I said, I know who will always be by my side. As my journey to the new normal begins, there will be no half sided, non caring fake friends in my court! The rest can kiss my ass!!! Really, kiss it!! My sister is my ride or die. She checks in every day and has been with me for most scans and some appointments! Love you KJ
My husband Scott can’t support me in a proper manner, because he can’t see any physical alignment/ injury yet( AS can cause deformities in the spine and other joints). He only see’s doctor bills, me not getting better, more appointments, and more scans. He see’s me laying on the couch an has called me “lazy”. I am just into much pain, so I lay there. His lack of attention hurts, which adds more fuel to the fire and stresses me out on the inside. I can’t really even talk to him about all that I feel or what the doctors have said. I sing to him ” I am so lonely” and ” All by myself”. He laughs and says I’m not, but this is how I feel.
I am optimistic about the future and will remain with this outlook until some improvements begin. I will still be doing imaging every 6 months to see the progression of the AS. Not sure how long PT will continue! My team and I literally take it week by week until we reach some level of improvement. I have told myself I will not give up and try my best each and every day to keep moving!! Just putting one foot in front of the other! Or another thing I sing “Just keep swimming, Just keep swimming”
Daily Notes 12/12/16
Well, we start another week off at the doctor’s office. Reviewing scans and adjusting meds. I am curious as to what the latest MRI shows. As always before I left, I asked Scott several times if he would go with me. And as always it’s the same answer. NO. I just want to scream at him!
This past weekend was rough. I woke up Sunday morning with a new pain, right underneath my shoulder blades. In all this time I have been on Norco, I have never woken wanting to take them. I did on this morning. So we tried the natural way first: took all my anti-inflammatory, did my stretches, pain still had no improvement. So I started my day off with a narcotic. Great way to start the day. NOT! Eventually, by the evening, the new pain was gone and the normal pains is all I felt.
The Journey
12/28/16: This morning started with my meds, then off to PT I went. I had been a bit concerned because of the bruising in my legs, so I showed her 1 of the many! BP was up, so she insisted that I call Pappa when I left. Today is also injection day! (3rd round) So after a few calls, I have been given the green light to do my injection! Oh but wait, we have a follow up with neuro today as well! So I am patiently waiting to see Baha….. Blah—–it is only 1:00. Blah–
I haven’t been updating this as much as I like, but a lot has happened since the last entry!!
Jan. 18, 2017 ~ On New Years I decided to actually make a resolution: move more each day! So the plan was to at least get a mile walk in each day! It took me a few days to figure out my route around the neighborhood, but I got it down! I noticed that each day my body would have less pain. Still there but not as intense. The only downside is when I stop ✋ for the day my legs would literally be pulsating with pain. I am still trying to push myself each day to continue with this resolution, even started wearing my FIT BIT again. I believe the goals I have set for each day are a good start. PT is on board with me walking so much that I pushed myself to 2 miles!! I am trying so hard to get me back to me!
My family did receive the best gift from God and she came at the perfect time! I am an Aunt x 4 now! Welcome to the world Miss Hunleigh You are beyond beautiful 1/16/17 4lbs 10oz
But the one I should be able to count on the most is not there, thanks, Scott. Thanks for your lack of, in every department. Especially the last few days. You are draining what life I have left. In our vows, we said, ” For better or Worse and in Sickness and in Health”. You have let me down. * before I go on a rampage, let me go on my walk
Jan. 23, 2017
Well, I have started the week with a follow up with Pappa…Unfortunately, this visit is one with a lot of emotions. On 1/12 I experienced the most unbelievable pain in my abdomen… by the end of the night, I looked 9 months pregnant! In the days that followed, I have had severe abdominal pain and my BM are so nasty and painful. This is also followed by vaginal bleeding and a sharp pain in what I am saying is my ovary area. I am experiencing shortness of breath just after eating. Pain across my shoulder blades. The past few weeks have been so hard. And as always Scott is an unsupportive spouse. He truly is a dick. I don’t even like talking to him anymore because he is so negative. Thanks for the support and hand-holding NOT
Well, they suggest an urgent appt. with GYN (of course, my guy is off this week) and if nothing is found I start the whole GI doctor process. WTF…I actually broke down in the doctors’ office today. And now trying to patiently wait for a return call. GYN tomorrow @12 w/ Frampton. Well he suggested to meet with his partner (my normal gyn) for surgical consult to remove what is left of my lady parts and another lapi….. No surgery we will try the depo shot again and re-evaluate 3 months! Dr. Simmons is the best! Leaving the rest of my lady parts in! But I should have a GI check up…..Its never good, but at least no one is saying surgery at this very moment!
February 14, 2017 HAPPY VALENTINES DAY ❤ But could you believe I am sitting waiting to meet the GI doctor. Happy V day to me, NOT. And as always I am alone. Scott is doing whatever and has Jack duty! Karen has Hunleigh to take care of so not much sissy time. At least we talk several times a day and night calls!! But back to the point~ and this will make you laugh!
Only I can be dumb enough to try some new cream on my face ( trying to make me feel better about myself and appearance) and screw up big time ~
While yours truly now has chemical burns on her face!! My dermatologist is probably still laughing today!! UNBELIEVABLE (smh at myself) So needless to say no plans for V day! Except for this date with the GI doc, oh how exciting I am slightly amused as to how this appointment will go~ sorry no one and I mean no one is going in my back door unless I am knocked out Maybe I should wish the doctor luck.The nurse is not very warm, but hey if I had to deal with what come out of a human body, I wouldn’t probably be either!!
Feb. 23,2017
Completed a Colonoscopy and a Endoscopy. A few polyps removed but no IBD. Dr. B made me feel like I had a crazy disease, right before I was put to sleep he said, “Mrs. Crosby is HLA-B27 +”. For the first time I felt like I had some horrible contagious disease. Butthole(no pun intended ) The procedure itself wasn’t bad at all. It’s was the day before that killed me. I kept saying to myself ” This is where the doctors send you when, they don’t like you anymore!” I will never look at Gatorade the same again.
Today I also received a call from a different PT facility. Weird, considering Pappa wouldn’t sign off on Sports Spine Tracey renewal. So on Friday, I meet the new PT team.
March 3, 2017
I feel like I have been demoted. The new PT place looks like a shit hole. It makes Sport Spine look like a Cadillac. The guy Matt S. is asking way too many questions. But I also understand. He also says I will have a six packs for abs once they are finished. I call BS. Tracey said the same thing. I can definitely feel the difference between the 2 therapists. Tracey went lite on me. This new guy is hard core and way to perky. My back, legs, and shoulders are sore in places I didn’t even know could be sore.
March 8, 2017
Follow with Pappa. New meds this time an infusion of Remicade……Not sure how I feel. But the AS has to be stopped and go into remission. GOING HARD CORE
March 31, 2017
It’s has been a few weeks since my first infusion. This stuff might ACTUALLY be working. I have noticed less pain days!!!PT has been tolerable! And with Scott being down from knee surgery, this couldn’t have come at better time!! I was even able to plant some flowers with Jackson ( my sweet honey ). Second infusion is next week! Keeping my fingers crossed that this could be the answer!!
*Since I have been forgetting to update this as much as I would like….thinking of switching to Photo Journals. Just a thought. Still
We spent spring break at the beach house! Had a blast! And I sure did enjoy morning walks with Jackson
4/27/2017- it’s been a few weeks since I joined the gym! Jack loves the kid Fitness Zone…Mikey even came along today!! If we could only get Scott to go🏃🏻
Round 3…with adjustments! 5.2.17
Well 6.20.17 I should have been going to Round4 but at the check up appointment before hand I had a fever of 99.8. No infusion…Pappa wants a chest X-ray to make sure my respiratory infection didn’t turn into something worse! So Thursday morning I called to check in and the nurse stated: X-rays are good but your liver is producing enzymes in your blood. And I was clear to get my next infusion! If it not one thing is another! Not sure if I have said this but thank you mom and sperm donor Joe for the bad breeding!
9.5.17
Last day in the INF clinic!!! We are moving on to self-administrated shots….time for another MRI and depending on that it could be a trip to the Mayo Clinic. I have stated I will be your experiment but just fix me! To date, we have been doing the most invasive treatment….with barely any improvement. So a plan B is being created!
Yes I know, so glamorous! Late nights in out-patient scans are my thing! 😉But this scan on 9/14/17 showed minimal improvements!! Minimal or not I heard the word IMPROVEMENT! That was all I needed to hear. Hadn’t heard that from a doctor in several years.
Granted since I have stopped INF treatment all of the ” little” symptoms are back….the psoriasis is just awful. And my lord the pain has settled back in, all the time, all over my body, every joint, and excruciating. Give me my bio-logical meds back, please and thank you!
Happy Thanksgiving! 🦃🍁🍽 This year was oh so nice but sad at the same time. Mikey was with his father. Scott went to the farm to eat with his family. Jackson and I stayed home. Honey bee was sick. So we snuggled and watched the Parade on tv! Then I cooked at my pace: know it did take me all day to get a Thanksgiving dinner cooked (-dressing 😬). Food was great, but I really missed being with MY family.
The next week later:
Dr. Pappa also asked if I would be a part of the “Corrona Study”. Of course I agreed! Even if we can’t get me right, at least maybe with my help they will find something that works for the next generation!
Round 2 bing bing 🛎🛎 of non-INF clinical bio-logical meds: after a failed run on Embryel. (The bruising side effect was crazy. My legs looked like purple patches. Scott would just touch my leg and within hours his fingerprints would appear in the form of a bruise.)
So today I got my first shot of Celebrex. And was also sent home with an extra just in case the pharmacy is late. Which they all take their sweet time. So 4 more weekly shots then only monthly maintenance shot! November 28th appointment was okay, psoriasis has flared really bad, I presented more psoriatic arthritis symptoms than AS, lots of paperwork! As I have said before, I am pretty RARE and SPECIAL. As long as the new med works I am good to go and no return back to the Doc for 3 months! And no study stuff until May 2018!!! What shall I do with all my time?! Keeping my fingers crossed this works and I keep moving and improving!
Write in about falling and GI. 👍🏻
Feb 3: I am officially PISSED, MAD…..I am over it. I guess the Prozac is working for the emotional, depressed self. No more crying why me. I have to be able to do me! I need my life back. Ready for pain management, so much I have even looked into the Goldburge Clinic in Georgia. The testimonials are beyond spirit lifting! But Scott has snuffed at this and says we have no money for that. Disappointing ☹️ On top of that, it is a horrible pain evening as I did push myself beyond my limits. I am paying for it now. 🤬😤😡😬😢😖😟
Just did another round of x-Ray’s this time on my neck and shoulders as they have begun to hurt more and more. And of course, it’s showed osteoarthritis. Whatever. Fuck my body!
I will say, Andy, the Radiology Tech was so awesome he even let Jack help!!!
So I am 36 with arthritis eating my body from neck to toes. Osteoarthritis, AS, Psoriatic Arthritis, and HLA-B27 positive.
TO BE CONTINUED
Until the next entry: ✌💙💋
Sunday, March 4, 2018
A.S. Face 2042: Sheila Weitkamp
A.S. Face 2042: Sheila Weitkamp
My name is Sheila Weitkamp and I live in Abbeville, South Carolina. I was diagnosed in 2007 at 44.
I now know all the issues I had in my teens and beyond we’re related to this disease but was given many different diagnoses.
South Carolina, United States of America
My name is Sheila Weitkamp and I live in Abbeville, South Carolina. I was diagnosed in 2007 at 44.
I now know all the issues I had in my teens and beyond we’re related to this disease but was given many different diagnoses.
South Carolina, United States of America
A.S. Face 2040: Steve Martin
A.S. Face 2040: Steve Martin
Let me begin by saying, finding the AS support group and Special people like Cookie-Cheryl Hopper, has been the one of the good things about having Ankylosing Spondylitis.
I signed up for the Navy, in the Delayed Entry Program, at the age of 16, one month after my 16th Birthday, I had a Calling to go in the Navy, and at the age of 46, as I look back, God had the plan all worked out for me and the Navy was gonna play a big role in this disease, and my life with this disease.
I fell aboard my ship, and landed between 2 I-Beams at the inside hull of my ship, at the age of 19. This lead to pain in my back, thoracic area, and then came many various other symptoms, left shoulder pain, inability to lay flat on my back, fatigue, back pain, lumbar, thoracic and cervical and the worst one, THE ABILITY TO SLEEP, which still haunts me to this day. Fast forward to present day, God has shown me, that he is in charge and I can do all things through him. I have defended myself against the Veterans Administration System, medical side of the VA and the Benefit side of the VA, and represented 3 other people in front of Social Security Judges. AS has shown me, I am smarter than I actually imagined and that when it comes to defending myself, I can do it, with help from up above.
Winning my disability was great on the financial aspect and metal aspect but finding a good physician, to this day has been my biggest challenge. I digress, it took years to actually get diagnosed, because I was fighting the Veteran Affairs to provide the diagnosis, and trust me, Veterans have a hard time finding good physicians in most cases. I climbed the chain of command and made it to the Network Directors Office, and ended up having a meeting with about 12, very high ranking administrators in the VA system, which was my 1st big accomplishment in my fight with AS. this was in 2008, and that is when I finally got my diagnosis, and got my 100% disability. I finally got my life in order, as best I could, but like most of us learn, when dealing with AS, it can be a roller coaster ride, ups and downs. I had my disability approved, I had money to live off of, I had stability, but I still had AS, and the mental abuse this disease does to us, can not be explained to anyone who does not have the disease.
I had the pain medicine battle, I was on 120 loratab 10mgs a month, for years, the only thing the VA does do, is feed you pain pills like they are M&M’s. I had those pills for years, I finally decided to make major changes in my life to try to get my mental fight and physical dependency on pain pills under control, so I moved to Myrtle Beach, SC…. Yeah
After being here for a few months, I began my search for a good physician, yet, I got forced into a pain clinic. yes, OPIANT DRUG DEALERS, and I had few options, thinking I had to have pain medicine, I went down that path, and after 6 months on Oxycontin, I found myself telling my family I was gonna skip Thanksgiving the 1st year I was in Myrtle Beach, little did they know, I was gonna go down a rabbit hole and praying I could get out, I detoxed myself off of pain pills, and the opiant withdrawals were the worst thing I had ever been through. 7 days locked in my condo, 5 of which felt like HELL ON EARTH, but I survived and since 2012, I have been off of all pain medications, and it sucks at times, but I would not change it for anything, pain sucks, but I got too much to deal with, and I can not afford to be a drug addict, which opiants can do to anyone in a short period of time.
so after 2 back surgeries from the fall in the Navy, ankle surgery, tendons torn in half, from AS, and skin cancer ordeal, I am now in good shape other than anxiety, and AS, but I can cope with these 2 for now, I bought my first house, thank God, and I am trying to have as much of a life as AS will let me have. I hear so many stories about other AS warriors that have support from family or spouse and I am so glad to hear that, me on the other hand, I had the comments made behind my back, He just does not want to work, Lazy ass, and I had one or two people who had no issue making comments like that to my face, I overlooked it as much as I can, but having your family and friends turn on you, when you really need them the most, well, it is something I would not wish on my worst enemy, but I made it, and in case you are wondering how I did it, I say God is Good..!! I had to live with my mom for 3 and a half years, and she is one of the disability cases I had to handle in front of a judge for her Social Security disabililty, we won her case, we almost killed each other during that time, me, her, her cat and my cocker spaniel, living off of 500.00 a month, so she knows my true fight and supports me to this day, and I do the same, she is going for her 2nd shoulder replacement, and has been diagnosised with fibromyalgia, but I swear she has AS too, but she does her best to endure and move forward in life the best she can.
I guess I have wasted enough of your time on my story, but I want to say, AS has taken so much from me, my spine, flexability, peace of mind, but I refuse to let it take certain things from me, I am a Warrior, I am a good person, I have many abilities with few disabilities, I am here, I am gonna stand as tall as I can and do everything I can to enjoy this life, as much as I possibly can.
Please, don’t give up on the fight, never forget God loves you and always remember, you got Warriors on your side, all you have to do, is reach your hand out, and one of us will hold it, as long as you need us to, together, we can do anything and everything we want to.
Stay Strong
Steven Martin
Beach Bum for life..!!
A.S. Face 2035: Jillian Kennedy
A.S. Face 2035: Jillian Kennedy
Here’s a little story of my disease and the diagnosis. I started having back and hip pain when I was 14. I can still remember the day it really started! Went to an orthopedic doctor and was pushed off after the tests came back fine. I started having gastrointestinal issues and after being under the care of a gi doctor she referred me to a Rheumatologist to look at the big picture. In my FIRST, appointment I was diagnosed and started on medication. After 2 1/2 years of pain, I was finally diagnosed. It was bittersweet finally getting a diagnosis, I was glad to get one but not a lifelong chronic illness. I’m still learning about this disease and everything that comes with it!
Your fellow AS Warrior,
Jillian Kennedy
Here’s a little story of my disease and the diagnosis. I started having back and hip pain when I was 14. I can still remember the day it really started! Went to an orthopedic doctor and was pushed off after the tests came back fine. I started having gastrointestinal issues and after being under the care of a gi doctor she referred me to a Rheumatologist to look at the big picture. In my FIRST, appointment I was diagnosed and started on medication. After 2 1/2 years of pain, I was finally diagnosed. It was bittersweet finally getting a diagnosis, I was glad to get one but not a lifelong chronic illness. I’m still learning about this disease and everything that comes with it!
Your fellow AS Warrior,
Jillian Kennedy
Wednesday, January 17, 2018
A.S. Face 1969: Amanda L. Jones
A.S. Face 1969: Amanda L. Jones
I am 44. I was diagnosed a year ago but looking back I’ve had symptoms since my late teens/early twenties they just steadily got worse. I have had to medically retire from my career in law enforcement. AS has taken my job but I refuse to let it take my life!
Tuesday, January 16, 2018
Saturday, June 17, 2017
Sunday, May 29, 2016
A.S. Face 1627: Debbie Pastush
AS. Face 1627: Debbie Pastush
This is my story that I have put off since finding THE FACES OF ANKYLOSING SPONDYLITIS. Why? Because I was diagnosed with AS at 29 after years and years of complaints (which my Mom says started them on the path to Doctors back to age 10 or 11 with all kinds of nonsense except a true diagnosis). I blame the Healthcare System as well as Doctors that weren’t sufficiently knowledgeable of the disease that refuted the diagnosis, stripped me of it and put me into years of humiliation for claiming pain.
In 1989 a wonderful Primary Care doctor new to practice listened to me complain for weeks on end and finely ran the well known HLA-B27 blood test (positive) and from there, did X-Rays followed by a Myelogram that showed Pelvic Inflammation. He explained to my parents and I what he thought I had, a condition called Ankylosing Spondylitis. He did some research and found a clinic in the Atlanta area that specialized in the treatment of those with AS. After a series of tests that expanded three hours, I was told again, I definitely had AS and a plan of treatment was laid out for me. Everything I was hearing was overwhelming and scary and I didn’t know which way to turn but I also found out the clinic was not covered by my insurance. I decided not to return to the clinic so I basically retreated and entered into a state of denial. Back then, there were no support groups or Facebook or any on line help.
In the next couple of years there were different doctors and more tests. One was a Nuclear Bone Scan that showed some inflammation but that was quickly dismissed as having no relevance and with normal ESR or CRP levels, it wasn’t AS (so I was told). Pain continued to the point I could barely walk at times but as I would repeat my story, AS was discounted over and over. I literally begged to see a Rheumatologist but was denied a referral and there was no way of getting around that.
At one point I finally got through to a PCP and was referred to a Rheumatologist but what a nightmare I went through. He gave me the once over, maybe twice but when I didn’t react the way AS was “supposed to behave”, he become intolerant and scolded me for wasting his time and told me to never come back to him. I cried all the way home and swore I would never tell another doctor I had AS. At my PCP follow up, he took the liberty to remove my AS diagnosis from my records (based on the Rheumatologist’s note) indicating I didn’t want something to appear in my records that wasn’t true as it could work against me. I had no clue that I could say no, or why or anything but I learned in the future it did work against me in the way that when I would mention anything about it, it didn’t exist.
For those that say get me records, that was during a time doctors didn’t share them with you and getting a copy was near impossible but once I learned I really needed that evidence, it was years too late as the records were long ago destroyed.
By the 1990s the intense pains were well gone and I became very active in line dancing that seemed to help in so many ways. I was even teaching it and found it so rewarding but I had days that I just didn’t want to show up but always did and once I got started, I felt better. I had restrictions to some things but never questioned why, just avoided them.
For several reasons, I stopped teaching in 1996. A large group that had developed from my days of teaching would meet to go dancing. My Dad suffered terribly from damage caused to RA to his feet, knees and hands but dancing was the one thing that was his outlet and I could never say no to going out with everyone knowing what he was dealing with. I lost my Dad in 2001 and it all came to a stop at that time. He struggled with every step and encouraged me to keep pushing…..that encouragement was gone.
Backtracking, during 1985 and 1986 I was in three car accidents. The 1st was pretty bad and I suffered severe whiplash. I didn’t seek treatment – partly because I thought I was just sore and lack of support that I should. The other accidents were less invasive but I truly believe the 1st is where my issues now started. None were our fault. After I overcame the whiplash my neck hurt now and then but it was just more aching that I would blow off.
By 2005 my right arm was becoming numb but would wane but would return to intolerable pain so after months of testing, I had a distal clavicle resection in 2006 as the Orthopedic Surgery thought my issues were coming from bone spurs on my shoulder. That was the 1st doctor to tell me I was overcome with arthritis in my shoulder and he put on Motrin 800, my 1st anti-inflammatory. The surgery gave me some relief but also was a temporary fix as he said bone spurs often return.
In the next few years more symptoms started to become obvious such as ongoing leg and hip pain, neck pain and the sciatic jabs. I became unable to sit on hard surfaces without it causes debilitating pain or even sitting for long periods without it freezing me up to stand or walk without “warming” up. I would also laugh telling people I could trip over air as I was doing it all too often. Still, nothing was connecting. By 2008 my neck was always hurting and between that, my shoulder, hips and back, etc., I found myself in tears far too often and had to face the fact I couldn’t continue that pace at work any longer. I felt like the pain would ease up if I wasn’t so pressed to perform like I was for such long hours so that was the end of my career.
It did ease and I was offered some part time work from home doing what I had in the past. At first it was fine however the numbness in my right arm was coming back causing me to take more breaks.
My “air tripping” caught up with me in late 2010 when I fell down brick stairs in my garage and tore the tendons away from my left foot. This also is where incidentally they found a heel spur and a fractured talus bone (which explained why that had hurt for so long). A conversation while seeing the Orthopedic Surgeon landed me with a Neurosurgeon. In March of 2011 I had an ACDF at C5-6. The surgeon said the disc had shifted and entrapped the median nerve crushing it from any sensation to my right arm. He was concerned about the amount of damage that appeared to have been done but against the possibilities, I did regain most of that feeling but it hasn’t been right since which ended my dependability of work.
Still at this point, I didn’t see any connection to AS and I was now living in a small community that didn’t have any Specialists that could help me but more than that, I had lost my medical insurance. I applied with eight companies and each denied me coverage. What I found out was Group and Individual Insurance Policies had very different rules.
No insurance = No appointment and total devastation had found me at rock bottom feeling worthless. I had spent years believing if I worked hard and made my job number one (instead of taking care of my health) all would be fine. If I could go back and talk to a younger me, those priorities would be so different but I didn’t know how to be my own advocate.
I did find a County Clinic where a doctor believed me and never questioned the pain I was in so from 2011 until 2014, he was my only care would was more basic than a PCP. Even if I had the clear and undisputed evidence at that point, it wouldn’t have helped me because I still was told no appointment without insurance.
In 2013 I developed terrible pains in my sternum and ribs that affected my ability to breathe fully for over 3 months (I was taking very short breathes). I cried daily as the pain was unbelievable AND scary. Because I had a shorter episode back in 2002 that I was told was pleurisy, I was sure it was the same thing. I discussed it with the doctor during a visit but he really didn’t know.
After continued pain and complaints to the doctor, he said that a regional hospital might be able to work with me to have a MRI. When the order came in it said LUMBAR so I called to say that wasn’t right that it should be the Thoracic. They contacted the doctor who said he knew what he was looking for so without further question, I paid my $1100 discounted fee and had it done. Just what I expected, nothing found.
Finally in January of 2014 I had insurance again and on January 13th I fell in my home and fractured T3-T4-T5-T6, the areas that for three months 7 month earlier had been in daily, breathtaking pain but it took me until 2016 to finally put the two possible associations together.
2014 was finally the year I started to get some answers about my health but not about AS. Right out of the hospital I was sent to a Rheumatologist. In a Back Shell she did the posture manipulations as best possible and then asked me, “Do you feel better at Rest or Being Active?”
I was 6 days out of a traumatic accident that broke my back in 4 places so how would you answer it? Exactly….REST but that was totally the wrong answer as she informed me that anyone with AS would have answered “Active” and clearly I couldn’t have it since I didn’t know that (the way it was asked was AS specific). She quickly escorted me out of the exam room to the Check Out desk with instructions to turn me over to a Pain Clinic (so at least I was thankful for that).
For the next few months I was in and out of every doctor’s office to check off one issue after another but by mid 2014 I realized that I needed to be closer to family as well as a more populated area that offered better medical access so I upped and moved.
My hopes were quickly dashed when I realized the medical plan I had selected in the new state had many doctors refusing to accept the insurance and those that did, the wait list was very long. The one Rheumatologist within 100 miles had an 11 month wait list. As the months passed I become more involved with on line investigation and in support groups that really started to open my eyes to the fallacies and realities of the disease, how many ailments are known to be associated with AS and how the message of these really wasn’t wide spread. Many of my symptoms begin to add up but the home work was far from over because what I knew wasn’t supported by many doctors.
Realizing that by the time I could see the Rheumatologist, I would have another insurance plan, I needed to find a doctor that was on both so decided to go out of network so I reached out to one locally and paid out of pocket. My hips area pain had been chronic for over a year so he ordered a Pelvic MRI which quickly was denied by my insurance company stating there was no medical necessity. In January 2016 we again submitted it through my new insurance which was quickly approved and the findings…..BILATERAL SACROILIAC JOINT EDEMA was in blaring letters on my report. Hallelujah! 30 years later but finally it was right there and undeniable!!
If you are still with me, thank you but know with my story there are so many more that are struggling and tell similar stories. This might be one of the longest stretches but for many, it takes years to receive a diagnosis. It’s not a “Man’s Disease” but some women like myself develop AS in different areas. Genetically, I’m more prone to peripheral areas which may have played a part in my story and delay of recognition. We are all different but all the same. We have AS…..we all need the support and understanding that we may look fine at a glance but inside, so different.
Please learn about Ankylosing Spondylitis by visiting http://www.spondylitis.org/.
Debbie Pastush
South Carolina, United States of America
Saturday, May 28, 2016
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