Category: 2019
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a different new chapter.
It’s been a while. Matter of fact it’s been too long and honestly more has happened since June than I’ll ever be able to fully put into words. It’s been some of the longest and most trying (emotionally and physically) months of my life. July took mom, dad and I to Florida for a much-needed…
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ehlers danlos syndrome awareness month 2019- part 2.
16. What is your support system like? My family is my rock. My mom is my confidant. My dad is my hero and protector. My brother and sister-in-law are always by my side. My Grandmom is my number one fan. My church family keeps me going spiritually and mentally, which in return keeps me going…
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ehlers danlos syndrome awareness month 2019-part 1.
Ehlers Danlos Syndrome Awareness Month was May, but due to the state of my health, I wasn’t able to get my EDS awareness blog posts up in May. That’s chronic illness for you, but I’m okay with the delay because now I get to make June EDS awareness month as well! I can’t pass up…
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remembering jaquie beckwith.
May is Ehlers-Danlos awareness month. There is no one who was more eager and willing to take on the challenge of raising awareness for Ehlers-Danlos than Jaquie Beckwith more affectionately known as Chronically Jaquie. It was in great shock that I found out last week that Jaquie went home to be with the Lord on…
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the silence will break you.
My life is hard, no question about it and sometimes I get stuck in this trap that no one would want to go through the hard with me or should have to go through the hard with me. When I was younger I watched as the people I loved and cared about were afflicted with…
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He will.
I have this memory from when I was younger…I had gotten grounded for something that I don’t even remember, but I do remember the feeling of being grounded. I probably didn’t have any real plans that weekend, but as soon as I was told I was grounded it seemed as if that weekend held all…
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another week, another surgery.
You might’ve noticed that there was no post last week…Last week was a bumpy ride for my health and a ride that I don’t care to get back on, anytime soon! Our week of traveling went well, we survived and even managed to kidnap my Grandmom in Virginia and bring her back with us while…
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keeping up with the johnsons.
On this week of Keeping up With the Johnsons… Dad needs surgery, mom’s infusion medicine is denied by insurance, Brooke journeys to Vanderbilt Hospital in Nashville, TN and Brooke starts Methotrexate… Just another week in the Johnson household, but it has come quite apparent to me that maybe not every family has weeks like the…
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red + blue = not crippled.
When I say that I brought a “wagon filled load of records” I was not exaggerating… It took 2 weeks and 2 separate appointments for my new rheumatologist to be able to go through all of my medical history. The first appointment removed a weight off my chest that I didn’t even realize was there,…
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juvenile rheumatoid arthritis.
I was officially diagnosed with juvenile rheumatoid arthritis in middle school, but my joint pain had started at a much younger age. I remember going to the pediatrician when I was in about third-grade complaining of knee pain. At that time I was told it was simply Osgood–Schlatter. I wore the little band below my…
