My Journey -Part 1
Let me start off by saying this post isn’t for sympathy. This post is to tell you about how I hit rock bottom & took my life back. Besides still being afraid of my future & the little hiccups I have here & there, my life has changed for the better (I’ll get to that part at the end of post #2). I owe it all to God & to those that prayed relentlessly for me! So THANK YOU! As you see throughout my journey, God showed up plenty! He never left my side! Praise 🙌🏼
During my last 2 months of pregnancy I started noticing this awful dry cough, that just wouldn’t go away! We just all assumed it was GERD from the pregnancy (even though it felt extremely different than the GERD I experienced with Scottie). I was having shortness of breath, but who doesn’t when they are nearing the end of pregnancy?! Delivery came & that was a mess as well! It took 2 attempts to get the epidural in the right place. The epidural went up my body instead of down. I could see myself breath, but couldn’t feel it. Pretty terrifying. Oh, and I obviously felt the whole delivery. Grady had the cord wrapped around his neck and I was already so short of breath from everything leading up. The delivery itself was scary! They had the NICU team called in, but luckily when he came out, he was just perfect! The next day came my spinal migraine. 6 out of 10 headache. Turns out it was a spinal leak! I had a blood patch immediately & it worked like a dream! Went home to begin our journey as a family of 4 + Finley. Well 2 am that night, my patch dislodged & everything happened again, this time more severe. 10 out of 10 headache. I literally thought I was having a stroke. Ended up in the hospital for another blood patch (which failed). My blood pressure was also high at the time so they worked me up for post pregnancy pre-eclampsia which was negative, thank goodness! I was bedrest for 2 weeks while I waited for my body to heal itself. Little did I know, I was about to be hit with something 10 times worse. After the spinal leak healed, we experienced one week of normalcy. I thought, everything is going to be okay! After that week, my cough returned, my hands were so swollen they looked like a blown up glove (my rings didn’t end up going on until summer of 2022 & this was in November of 2021 when the swelling started). I developed ulcers on my tongue. With just these symptoms alone, I went to urgent care & my primary care doctor. Urgent care said it was probably just postpartum, primary care ran a few tests, but everything came back normal, so she thought the same thing. Then my shoulders and neck became so stiff I couldn’t turn my head! I messaged my OB about that & got a referral to a chiropractor. My hands then started to look so dry all over, and some days they bled it was so bad (especially when changing diapers). I also went to see a medical professional over cracking, was also told it was postpartum. I had panic attacks on the regular & felt this overwhelming since of doom (so hard to explain). My husband was fortunate enough to take leave, which was a blessing. He couldn’t leave the house without me fearing I would drop a child. I was so weak, I didn’t want to be left alone. Many people were starting to think it was postpartum depression, but I knew deep down, it was something else. Come the week before Christmas, I lost my appetite completely (which is not like me, I love food). I lost 8 lbs in 1 1/2 weeks. Christmas Day I remember telling my family I didn’t think I was going to make it through whatever I was experiencing. I was losing weight, not eating, my hands were so stiff they couldn’t function, I was short of breath; my heart rate stayed in the 150s+ with any movement. I slept all of Christmas Day away. The next day, I said that’s it, take me to the hospital. I went to the hospital that I had worked at (at the time). Told them I thought I had a pulmonary embolism (PE). They rushed me back immediately. My heart rate was tachy in the 140s & my oxygen saturation was 96-97% (which is normal for O2). They immediately did a chest X-ray. They came in to discuss that I didn’t have a PE, but they would be admitting me because I had broken glass & what looked to be fibrotic changes (scarring) all over the bases of my lungs. I was rushed off to get a chest CT. It was dinner time, when we finally got the results of the CT. Here are the findings.
IMPRESSION:
1. Lower lobe predominant reticular nodular opacities with mild associated traction bronchiectasis and no evidence of subpleural honeycombing. Constellation of these findings fit the criteria for probable UIP pattern. However, patient's age and clinical presentation are atypical for UIP. Constellation of these findings may be related to post Covid 19 fibrotic changes. Chronic hypersensitivity pneumonitis may also be considered and short-term follow-up in 3-6 months is recommended.
High Resolution CT Chest Features: Findings consistent with probable usual interstitial pneumonitis (UIP) pattern.
2. Multiple intraparenchymal and subpleural perilymphatic nodules measuring up to 6 mm in diameter.
Recommending a follow up in 3-6 months.
Since I have knowledge in the medical realm, I instantly started crying. I knew something was seriously wrong. The Med Team immediately came & said I had an infection or disease of some sort that was causing major inflammation on the lungs & they wanted to work me up for all the things including autoimmune diseases. They were thinking Rheumatoid Arthritis (RA) & Scleroderma at the time. Pulmonologist came by & he pretty much brushed off my CT. He said your results show Idiopathic Pulmonary Fibrosis (IPF), but that’s only for old men & smokers (which is 100% wrong, I have come to find out). He said your nodules are probably nothing & we will repeat a CT in 6 months to make sure they aren’t growing. He said scarring was probably old. Pretty much told me I was a healthy 30 year old & didn’t need to be in the hospital (despite me having a chronic dry cough with other symptoms). There wasn’t a rheumatology in house, so they just sent off a referral. Turns out they couldn’t see me for at least 3 months. When I got discharged a couple days later we felt extremely frightened, confused, & lost. All my labs came back normal, except my cardiac enzymes, CK, & ANA. With all the information we had gathered, I knew something was horribly wrong. I called the rheumatologist office & demanded to be seen (which is so unlike me). She said it’s your lucky day, because we have a cancellation, can you be here in 30 min. I said you bet, & off we went. The rheumatologist there was shocked I had been brushed off. She said something was definitely wrong. Her opinion was that I had RA with (interstitial lung disease) ILD. Yet again, we were terrified! I was immediately sent for X-rays of the hands & feet & you guess it, more labs! X-rays came back negative, but she still was leaning towards RA. She sent me home on 40 mg prednisone while we waited & I was to start injections once insurance approval. During the meantime I developed a lupus like facial rash, which I told her about. She called me & said I want to bring you in for more testing. A myositis panel. She said I think you have RA & dermamyositis. She told me not to google anything, as it was frightening. Well a few days later, my muscles started to become noticeably weak. I could no longer hold Grady at all because of fear of dropping him. My legs became heavy & I would sometimes have to lift them up to get in bed or in the car. It was also hard to go from sitting to standing & I really struggled to get leggings on. I knew once that happened, she was right! If it was dermamyositis & RA I was to start chemo infusions immediately (which I didn’t love). The myositis panel took 2 weeks to come back. I received an MRI of the legs sometime during this mix (can’t remember exact timeline). My MRI results showed muscle atrophy in the upper thighs. While waiting on results of Myositis panel I started looking for second opinions…. One of my MIL friends got me in for a quick second opinion & sent more labs to a private office. She was incredible & was so nice to me. Both of them were & super knowledgeable. We were trying to find out who the best rheumatologist was in the area for ILD! Again, I liked my first rheumatologist & I thank her for saving my life, because she did get the ball rolling in a lot of ways! My cousin was a nurse at Duke at the time & she asked the Duke Drs. she knew who was the best & they gave me a name. Unfortunately, we were told he wasn’t taking new patients. The rheumatologist I was seeing at the time, got me a pulmonary appt immediately! I had a PFT, and it showed mild-moderate interstitial lung disease (ILD). Great, more bad news! We already knew this, but this confirmed it. The pulmonologist I saw also recommended the same rheumatologist, saying he was brilliant, but again, he didn’t see new patients. She also recommended a different pulmonologist, an ILD specialist (who I was told I also couldn’t see). I decided to take matters in my own hands. I somehow came across an email of someone in his office. I emailed her my story & begged for my life pretty much. She responded immediately, they would see me next week. Turns out, I had emailed his wife. Such a GOD thing!!!! My experience with my new rheumatologist was amazing. The PA spent about an hr with me & then sent in the big guy! He then spent another hr with me. He said I don’t think you have RA, lupus, or dermamyositis. He did draw every panel just in case. RA was negative, scleroderma was negative, Lupus was negative. JO1+ & Ro52. There it was, my positive antibodies. I was diagnosed immediately with Antisynthetase Syndrome (which is in the myositis family). My disease is extremely rare & the research field is very narrow. If you google my disease it says most make it to 5 years. If you google ILD is says 3-5 years. No one would give us answers. Everyone just kept tip toeing around the scary. My new rheumatologist finally gave us answers. He said we can beat this bad boy. We can get you into remission! He also said I don’t think you have fibrosis (scarring) which we had been told. He said, I think it’s all inflammation! We won’t know until another CT is done though (& we still don’t know, we will this June). So he said let’s go after this beast aggressively & I’ll work with your pulmonologist to decide best treatment plan. I got in with the ILD specialist I mentioned above, which is who my new rheumatologist also mentioned. They work together a ton! Another God thing! As my journey of treatment began (high dose prednisone, 2 immunosuppressants, & talks of an infusion), I got worse before I got better! My arthritis was so severe in my hands, I lost complete function. I couldn’t open pouches for the kids, couldn’t click them into car seats, couldn’t really take care of them at all, I actually couldn’t do really anything with my hands. My parents at this time had already moved in full time. My Mom stayed about 3 months. My in-laws also helped by bringing groceries, etc. The doctors didn’t want me being exposed to anything or anyone at that time besides who was living in the household, we even had to take Scottie out of school for a few months. It was very isolating! Boy, did I have cheerleaders though! I think my brother & SIL called me every day googling something new & trying anything & everything to find a solution! Anyways, back to my story…. My arthritis then spread! I now had it everywhere you could have arthritis. My hands, wrist, elbows, back, knees, & feet! I was in pain all day every day! To get on the floor with the kids was extremely painful & I couldn’t act fast when doing anything with them. We thought the steroids would kick in & medicine would help with the inflammation, but it didn’t. It was time to add on an infusion. So we did, 2 rounds of the infusion, & now we wait for it to deplete my B cells. I was referred to a neurologist for an EMG study, where I was told my inflammation had caused such severe carpal tunnel, I was losing nerves & almost complete function of my thumbs. Was then referred to ortho & had immediate carpal tunnel release surgery on both hands (4 weeks apart) to save my hands! I forgot to mention I lost feeling in my fingertips Nov. 2021 (from the arthritis, carpal tunnel). Feeling in my fingertips did not come back until September 2022, but Thank God it came back! We had to hire full time help during the summer, I was not able to take care of the kids by myself until August 2022.
Will pause here & post part 2 next week (hopefully I’ll have my results by then to share 🙏🏼🤞🏼)
I got lots of just sweet encouragement in the question box, but only received 1 question.
What was the very first thought that flashed through your mind. - When I got the diagnosis, it was that I was going to fight like heck to be around for my kids! Whatever it takes, I’m willing to do!
