I am feeling better than I have, well if I am honest, in years. Not since I was pregnant with Antonio, our third son, who turned six earlier this year. I felt amazing when pregnant with him. Then he was born, and the pain came back with a vengeance. Hurting and feeling terrible was my standard. However, I kept trudging onward because there was nothing else to do. Over the last few months, I have established an excellent team of doctors- an endocrinologist, an internal medicine doctor, a pain management specialist, and a rheumatologist. Yup, I see four different doctors frequently. Plus, I have a cardiologist and a spinal surgeon who I see infrequently. This team of doctors, I have assembled over the last few months have finally started looking at the whole picture that is my health, and it is finally starting to pay off.
Numerous friends and family members have mentioned that I both sound and look like I am feeling better. My childhood best friend told me the last time we chatted that I sounded like my old self- the pre-sick me. My house is nice and clean. The boys and I are doing more activities. As a family, we are taking mini-road trips and going on outings. I am sleeping better and waking up in the morning is more pleasant. I am not suffering from as much brain-fog. I have more energy and less fatigue. Compared to how I was 8 weeks ago, I am healthy. However, here’s a secret…I am not cured. I am not really healthy. I am still sick. I still suffer from immense pain daily. I still have a long litany of symptoms. I still have a long list of diagnosis: Scoliosis, Arthrodesis (term for spinal fusion, which is indeed listed in my records as a medical condition) Ankylosing Spondylitis,Sacroiliitis, Sacroiliac Joint Dysfunction, Rheumatoid Arthritis, Trochanteric Bursitis, Myofascial Pain Syndrome, pain from nerve damage, unknown thyroid issue (still waiting on test), and chronic vitamin deficiency (still looking for the cause of this). I am currently restricted by my doctors to traveling no further than six hours from home. This really sucks, since I am missing out on a family wedding and a road trip to see friends. I am a walking train wreck. Yes, I am feeling better and it’s because I am blessed to currently be under the care of a great team of doctors, who are using medication, physical therapy, nutrition, and alternative medicine to manage my care. They have knocked several of my conditions back into remission, and the other ones are currently being well managed.
I am taking full advantage of this and living life to the fullest. However, even when I am feeling well, I still have to be acutely aware of what I am doing. I am never going to go bungee jumping or skydiving. I will never be able to hike the Colorado trail. I still have to be aware of what I am doing, because there aren’t any guarantees. I could wake up tomorrow feeling like shit- with all my conditions going haywire and out of control. I spent Saturday and Sunday laid up because I had a flare come up out of nowhere. I hadn’t done anything particularly strenuous either to cause it. It’s just the nature of having chronic illnesses, even ones that are being managed well. Being managed well can also change at the drop of a hat. Medicine can stop working for any number of reasons, or a new symptom can crop up. However, I nor any chronic illness/pain warriors can live in fear of flare-ups or conditions coming out of remission. We must make the best of things, both when we feel good and when we feel terrible.