It’s absolutely crazy for me to think about the fact that my mom is sick too. You guys see 5% of all she does for me & I know you realize how much of a superhero she is. But my mom is an invisible warrior with autoimmune disease as well. She has 3 autoimmune diseases: Anklosing Spondylitis, Celiac and Rheumatoid Arthritis. Right before I got sick in 2018, she was getting sick. They actually thought she had Lupus in the beginning, but after further testing they found she had Anklosing Spondylitis (AS). AS is an inflammatory arthritis affecting the spine and other large joints like her hips and elbows. Over time, it can cause your spine to fuse & because nothing is easy with the Gehrls – her entire spine from her cervical down to her low lumbar is fused from scoliosis surgery when she was a teen. So her AS is complicated by the rods in her back and makes her case very, very difficult. When she was diagnosed, she immediately began a clinical trial for treatment on a Biologic called Cosentyx & was watched for over a year while this medication did it’s work. She still has really bad days filled with lots of joint pain, fatigue, and brain fog. Since her spine is fused already, the AS attacks her hips and those are some of her most painful days. Shortly after she got diagnosed with Rheumatoid Arthritis (RA) and that has just done a number on her joints.
Last year, my mom had to have surgery for an ulcer in her esophagus. When they did the follow up endoscopy, they found erosion & inflammation in her small intestine, which they biopsied & discovered she had Celiac disease. Celiac is a complex autoimmune disease where gluten triggers a harmful immune response in your body to destroy your small intestine. Due to this, the only treatment is a very strict lifelong gluten free diet. Celiac is much different than a “gluten intolerance”- so much as a crumb could cause a flare up & damage her stomach. She went gluten free immediately and has continued to stick hard to her diet. It’s been extremely difficult as a foodie, but chef JGehrls does an amazing job cooking and accommodating her dietary restrictions for all meals. My mom is a “no attention on me” type of gal, so having to ask for gluten free menu items or having to turn down a bite or sharing something non-gluten free with someone is super hard for her but I’m so proud of this lady for taking Celiac like a champ & never ever putting gluten in her mouth (knowingly). This has been a huge change for her & she’s handled it with loads of grace.
Recently, my mom started experiencing severe low back as well. After an MRI and multiple appointments with a neurosurgeon and pain management, they found she also has very significant lumbar spine problems. She has degenerative disc disease like I do and because of the rods in her back, it is super complicated. She has also developed levoscliosis, which means she has developed a new curve under where she has rods. Because of this, her lumbar vertabraes are pushing into her hip bone and will continue to put pressure there. The rods are extremely old and outdated, posing many problems and risks. In order to have the full surgery my mom would need to fix this, it would probably handicap her for the rest of her life. There’s a very high risk (80-100%) of complications and paralysis, and that’s not a thing to mess around with. Because surgery is just so complicated for this, she is trying conservative therapy of steroid injections in her back. So far the injections are working and we are praying they continue to.
My mom took over as my full time caretaker when I got sick. At first she still worked full time (at home) but as I got sicker, it just became too much to work full time as a business owner and meet all the caretaking needs I presented. A typical day looks like mom helping me in the morning when I wake up. She empties my catheter or helps me get to the bathroom to empty it on my own, and then she will take my puppy Pippa downstairs to feed her and let her run around a bit… then literally all day she just gets whatever I need, helps me turn in bed or get more comfortable, gets me food/drinks, handles all my insurance and medical paperwork, and gets all my prescriptions…administrators meds through my PICC line or redresses the area. On top of that all- driving me to endless appointments 2 hours away (one way) at UCLA. We handle these appointments like a BOSS!!!! For a while mom had to lift my very heavy wheelchair in and out of the car, but now I either walk in w my cane/walker or we use a UCLA wheelchair… but she takes me to each and every appointment – no matter the time, place, or date. She’s never like “oh I’d really love to sleep in that day”. It’s always no questions asked- that appointment time works.
My favorite thing in the entire world is to watch trash tv with my mom in bed. Almost everyday we get to watch tv together & it’s our thing. I think these shows we watch make us tune out of our own lives for a bit and we are able to just relax and try to decompress. But the most comforting thing to me is my mom (or dad) laying in bed with me. Mom and I watch soooo much reality tv – Bravo, TLC Lifetime….oh & the Bachelor (DUH!). She will never truly know how much I enjoy this time with her.
I don’t know how it feels to watch your daughter suffer day in and day out. I don’t know what it’s like to walk by my room everyday, knowing I’m in there suffering or to listen to what these doctors say is going on in my body. We’ve had to sit through the hardest discussions and the most difficult appointments. I don’t have a string of more than 3-4 days of feeling “okay” anymore and these days it’s 0 days of feeling “okay” so the demand on my mom is higher. I need more help during the day and often have to wake her up at night for something (which is my least favorite thing to do). Taking care of me is a 24/7, nonstop gig that she didn’t sign up for but she non-arguably excels at. I can’t put into words my love for this woman. Her unconditional love for me pours out on a daily basis and she never lets me go a day feeling like I’m alone in this. At the end of every day, I at least know I have her and my dad carrying me through.
My parents never stop thinking about my health. It’s a constant stress for us. I don’t know why my mom & I were given these awful diseases. I don’t think we’ll ever know why so there’s no point in thinking about it. But what I do know is that my mom, dad, Mason, and I can get through ANYTHING in life since we have each other. I plan to have both my parents write a blog entry about what it’s like to take care of me. I think it’s such a unique experience having to take care of your sick, adult child. And for my mom – dealing with her chronic illness on top of it. Not many people probably understand the monstrosity of this job, but I hope we as a family are able to shed light into this process and spread awareness about chronic illness and caretaking. It’s been extra tough lately with my decline, and being bed bound again….while mom is also suffering immensely. Please send good thoughts and prayers for us as we continue this battle.