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!
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! 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.
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. 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. 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!!
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 horrible. 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 too 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
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 ~
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!
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.
I will say, Andy, the Radiology Tech was so awesome he even let Jack help!!!
I started a Facebook Birthday fundraiser for Spondylitis Association of America! So far we are only & $400.00😉 Hoping on the day of May 31st, I reach my goal of $2087.00! This is also my Face of AS number! Ms. Cookie is such an advocate for people like me.
I am trying to help my AS Community. I believe we ended up raising $700. I will take it! That was the only thing I / we did for my big 🎉 day. So much fun. Visit Facebook/donate!
July 1, 2018
The month of June was an absolute nightmare. On my birthday I quit my job. I am sorry no one can talk to me like Scott Crosby and pay me as little as this little man syndromes employer. Needless to say, know I have to file. Complaint with LLR just to try and recoup what he deducted out of my paycheck, in which he can’t do. So we added a new battle to my already ridiculous life. Oh and let’s not forget the bacterial infection working it’s way across my face. Literally.
So of course you all know my next sentence. Another biological med change. She did give me pain meds. She can see the pain. Actually I also saw neuro I think end of April and he could tell I had gone back to work full time he goes “Jen you back work full time?” I answer “Yes” he goes in to tell me “ I can tell your pain is getting worse just by looking at your face! And you are more agitated then usual.”
I started a opinion/ referral service called “Sweet Honey Bee Agency” it’s coming along. But I will definitely have to try and supplement my funds as I am way the debt hole now.
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!
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062
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