So how do you react when the doctor looks at you and tells you that your daughter has a chronic condition for which there's no cure, just management? Steve and I looked at each other as if to say, "oh, great", Mary Alice got teary-eyed, and we all tried to wrap our heads around the "good news". Ok, it's not something "really scary" (I didn't even ask) but this???? We had been doing enough research to know that lymphedema, while not life-threatening, is definitely life-altering. A lifetime of compression garments...ugh. Oh yeah, Happy Birthday, MA. The official diagnosis came on her 17th birthday, April 10, 2014. But this had been going on for months, and looking back, probably a couple of years.
The swelling in MA's ankle has been happening off and on since she was in 8th or 9th grade. We always attributed it to soccer - maybe she got cleated, kicked, you know, regular kind of stuff. The swelling usually went away, didn't seem too painful, and honestly, life gets so busy sometimes that it blended in with other life events. We mentioned it every time we went for a sports physical, and the doctor never really offered any great advice. Ice it, try an ankle brace, ibuprofen. But in January, it got dramatically worse. Now the ankle swelling became more pronounced. Another call to the doctor.... Let's try an x-ray and blood work to rule out rheumatoid factors. Guess what? Joints look perfect on the x-ray but there's soft tissue swelling. Oh, thanks, but we knew that! Soon the swelling began to affect the whole leg...this was getting weird. We switched healthcare providers to get better answers. Our new provider was the first person to say the word "lymphedema". He thought that maybe that would end up being the diagnosis, but ordered a few tests just to rule out other stuff, like blood clots. Leg ultrasounds, and a CT scan of the abdomen and pelvis were both negative, so off to the vascular specialist in Virginia. After another ultrasound, and a couple of MRIs (ok, really MRVs, special MRIs of the veins), here we were in the vascular doctor's office hearing about the "good news". That was the start of this crazy journey we're on.
The road map for this journey is surely printed only in God's hand. Wishing you all the very best as you adjust your route.
ReplyDeleteRebecca Wilcox and Family
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