Thank you everyone who saw my Facebook post yesterday and to those who didn’t but were already sending thoughts and prayers my way anyway as the wonder team (Mom, Charlie and I) went to my appointment with a new doctor yesterday. The doctor was so sweet, and before we began, she asked me to tell her about myself as a person (apart from my illness). She wanted to know a little about ME, the human being and not just the patient. That felt so good because I don’t get to talk about what I love, what I’m passionate about, what made me happy before I was so sick and what my plans are if and when I become higher functioning in the future very often and especially not often with doctors! Before we entered her office, there was a sheet we filled out as part of my paperwork that listed a ton of potential symptoms, and then asked to rate the symptoms from 0 – 4 (1-occurs occasionally and is not severe, 2 – occasionally and severe, 3 – frequently but not severe, 4 – frequently and severe) and then tally up the total. She said that I am the highest totaled patient she’s ever had and she sees a lot of very sick patients with all sorts of illnesses including cancer. She said the severity of illness I experience is not common in the slightest and living with it is unbelievably difficult. She wanted me to know how remarkable it is that I am who I am in spite of it. She told me she wanted to take a second before we got into all the medical stuff and just honor me for everything I’ve been through at such a young age and for my positive and resilient spirit and faith in God. Mom and I both teared up. Y’all, it meant so much to me to know she was looking at me with love and compassion as a person and not just as a patient!
We started discussing all the medical details and going down the lists of symptoms, onset and diagnoses and over the loooong list of doctors I’ve seen. Mom handed her our thick folder full of test and lab results and she spent time looking through them. To our delight, this doctor has so much more collective knowledge about my illnesses than many I’ve seen. She has a lot of additional tests and labs in mind she wants to run to provide even more information, and she has referred me to several other awesome doctors who are also on the cutting edge of their fields and are ahead of their time. One of them is a GI (gastrointestinal) doctor in Edmond who will do scopes (endoscopy/colonoscopy) and take biopsies to check for indication of mast cell systemic allergy issues in my digestive tract. Most people would probably be less than enthused about having their insides scoped, this will be my third or maybe fourth time at age 25; however, I’m actually SO EXCITED about this! The doctor can identify the presence of Mast Cells which he believes are a major key to severe Leaky Gut and can actually contribute significantly to Gastroparesis. We suspect Mast Cell issues are also the cause of the episodes I have that we thought might be seizures. We could then find a medication or treatment to help get those under control, and in turn it will help with my digestion and absorption of nutrients, help with my Gastroparesis and make it far easier for us to treat my other conditions. That is HUGE.
I’m also going to be doing extensive genetic testing that my geneticist and my new doctor recommended so we can learn even more about my methylation defect, my EDS and other issues. She’s going to test my histamine levels and mold exposure, as well. She knows A LOT more than most doctors about rare and poorly understood conditions like EDS, POTS, Mast Cell, Gastroparesis, Lyme and more, and new ways to look at and treat them AND she’s right here in town! It was also encouraging that she knew who the majority of my current and previous doctors are and thought highly of them and their different approaches and information we gained from them. She also recommended a few other doctors – one who is using a unique approach to treating Lyme and another who knows a TON about immunology as it’s related to my conditions. Furthermore, she has a few Lyme patients who went to Germany for treatment and are doing significantly better. She’s going to find out more about what they did and where they went and pass it on to us! Germany has been on our minds and in our prayers as a future treatment location for me so it was exciting to get another confirmation of that. She also recommended new medications and supplements for me to try that she has found to be successful for similar patients which is also exciting.
Honestly, it’s not often that we walk out of a doctor’s office feeling not only heard and loved, but also with our arms full of options and possibilities! To sweeten things even more, she LOVED Charlie and Charlie loved her! I place value in who clicks with Charlie because he has such an intuitive soul. She was petting him often and talked to him a lot, and even showed us pictures of her own dog who was a rescue (you know that touches my heart!) When we left the office she wanted to hold Charlie’s leash, walk him out and even took him over to the grass for us in case he needed to go potty before we headed home! That’s a FIRST, and we were thrilled.
Thank you to all who prayed over my appointment, my doctor and for my awesome support system. For most people, going to the doctor is a boring simple task, but for us, it can be really scary. So much rests on how my appointments go; we never know if doctors will understand or validate what we’ve learned, if they will be kind and interested in helping me, if they will have any new suggestions or ideas to help me, or if they will laugh in our faces and send me out the door in tears (that’s happened more often than I care to admit). This doctor is already a huge blessing to me! I love the way God works – the way He put this doctor in our path through my sweet home health nurse Cindy, and especially the way He has held and guided me through every painful step of my chronic disease story.
We view my journey to wellness as a puzzle; every doctor we’ve met has given us a piece. Sometimes it takes awhile to feel out the edges, turn the pieces around in our hands, step back and reexamine the big picture and know where to place them, but no matter how small they seem, we know they each matter. There are a lot of times when the pieces don’t fit yet, so we hold on to them and wait for the right moment to come. God puts some pretty amazing things together, so even though there’s still a long way to go, and even though some doors we think I’m meant to go through close at the last minute, we know without a doubt He hears us. He has big plans for my life even when I can’t see or understand them. The lessons I’ve learned along the way and the emotional and spiritual healing have been tremendous and so valuable. His timing is perfect so I’m continuing to trust in that! I’ll keep you posted as we move forward with this doctor, testing and forming a game plan! Today, we are feeling very grateful and we would be thrilled if you would join us in some prayers of praise and Thanksgiving.