I’m So Glad…
Posted by healthyforhim
“I’m so glad that ‘nothing’ is wrong… ” my husband says often.
When I’m styling my hair and end up with another handful.
When I drag my sore body out of bed and force it to move.
When the least amount of wind hurts my ears excruciatingly.
When I can sleep anywhere, no matter how much I’ve slept.
When I’m constantly so thirsty, no matter how much I drink.
When I have no tolerance for sun, wind or cold.
When my foot cramps up, again.
When I don’t feel like working out… or doing anything… because I just don’t care, or have any energy to have any motivation.
It’s clearly nothing.
So with an elevated ANA of 1:160… and all other tests showing nothing is wrong… My Dr.’s nurse called to say we’ll do no further testing until mid-January.
Could I cry?
But instead I boldly asked her nurse to see if I could have a lip biopsy for Sjogrens…
I’m that solid in feeling that is what I have, and it often goes with celiac.
My dry mouth, dry skin, dry eyes… my sore throats, chronic sinusitis, fatigue, “exercise induced asthma”, breathing and low BP issues, the sore joints, and headaches… all point to Sjorgrens.
It’s obvious I’m getting worse, instead of improving… so I wonder why it is they wait for you to get SO sick that you can’t get out of bed (?) Is that when it’s important enough to do anything about it?
Because I’m almost there.
There are more difficult days… or more portions of my days are difficult…
Once my hair starts coming out in chunks – is THEN it important? Versus just having 1/3 of my hair left?
I don’t get it.
Am I saying the wrong things? Am I not loud enough?
Still – I read this miracle stories, where people had negative blood work but a Dr. just clearly sees the patient has Sjorgrens.
When Dr E. suggested sarcoidosis… I thought maybe…
But when the tests were negative – I easily dismissed it.
The Sjorgrens – I cannot. It’s too obvious.
Similarly to celiac.
The frustration is, I WON’T start getting better, until they start treating me… and there is no way to speed this process without someone stepping in to help me. Not to mention your immune system struggling is bound to stir up other auto immune issues.
The nurse said she would get back with me. We’ll see.
I pray for this daily.
I love medicine, and I’m so glad blood work is flawless for some people – but CLEARLY it isn’t for me… and I know there are others like me out there.
The “nothing” that is wrong… is clearly – something.
“They will have no fear of bad news;
their hearts are steadfast, trusting in the Lord.
Their hearts are secure, they will have no fear;
in the end they will look in triumph on their foes.”
Posted on December 2, 2012, in Celiac/Gluten Sensitivity, Metabolism, Our Struggles, Truth and tagged ANA, blood test, celiac, gluten intolerance, healthy for him, iPod, Sjorgrens. Bookmark the permalink. 2 Comments.