Tuesday, April 24, 2012

My New Diagnosis

So here is the short version - hind sight being 20/20...

A couple of months before I got pregnant with Rachel, I was extremely sick with severe digestion issues... and at 30 years old was debating purchasing depends.  sorry if that's too much info.  And I had already had 2 colonoscopies (my uncle died young from colon cancer) and an endoscopy.

My diagnosis: Irritable Bowel Syndrome - also known as a trash can diagnosis for the people they can't figure out. (in my opinion)

I got pregnant with Rachel and then Asa and haven't had any issues.

So then, a couple months after I had Asa, I decided I wanted to be able to run in Rachel's Race this year and started jogging on the treadmill at the gym.  5 days into it, I fractured my knee.  I've been disabled ever since.

So then after 2 months, I went to the bone doctor and told him my other knee was KILLING me.  He did an x-ray of both knees, the first one still wasn't healed and the other one showed nothing, but since I was in so much pain, he assumed I must have broken that one too and just didn't notice it because my right knee was so bad.

My new diagnosis: 2 broken knees and a little arthritis.

I was still in a ton of pain so I had my primary care do all sorts of blood work.  (yes, including Lyme) and they also ran a bone density test.  After tons of tests...

My new diagnosis:  Low vitamin D.  They said that it can be very painful so just take a supplement.  They also said in my arthritis panel, I had a positive, but it "wasn't enough to worry about".

2 months later, I'm in so much pain that I called them in tears.  I told her about 10 times that I think I have an autoimmune disorder.  She said they would put me on a med for my 'arthritis' - but of course, none of them are safe while nursing.  I said I would stop nursing if they were certain it would help me, but that I didn't want to guess at my diagnosis and stop nursing my baby if it wasn't going to work because it's the wrong diagnosis.  She said defensively "it's not a guess, you have arthritis, you tested positive".  But she offered to send me to a Rhuemetologist. 

A few days later, my sister (who has suffered from all these same things for years, but to a much greater extent) called and said she tested positive for a test called ANA. She said that I should ask them to test me because it tells if you have an autoimmune disorder - which is what I had been telling them I thought I had. 

So I call and they look at my chart and say "that is what we tested you for in Feb that you tested positive for"

Are you freakin' kidding me???  I don't know why these people get paid at all, never mind so much.  Apparently the ANA test is part of the arthritis screen so they just looked, saw a positive, and assumed it was arthritis.  ???

The new diagnosis:  And autoimmune disorder.  SURPRISE!  wow.  It wouldn't be so bad if they made you diagnose yourself if they would as least listen when you do!

So anyway, I'm on my way to the Rhuemetologist in a half hour.  And I am nervous.  For the first time in my life, I understand why my sister pushes these things off.  At least I think I do, maybe I'm different and she's just a procrastinator :o) -  but it dawned on me yesterday that as much as I hate not knowing what is going on with me and why I'm in so much pain.  I'm more afraid of a diagnosis.

I hate diagnosis's. Especially if they are ones that don't go away. 

The day I got Rachel's diagnosis was a life changing moment.  Never to be the same. 

My uncle Dale's diagnosis... changed my entire family's lives forever.

My sister's diagnosis....years of pain and struggle.

Friends and relatives... cancer, fatal birth defects, heart problems..... never. the. same.

I'm so sick of diagnosis days.  But they aren't going anywhere this side of heaven.  Please pray that the doctors will get to the bottom of this and that I get the proper treatment - and a treatment I'm comfortable with because the things I see other people have to use in order to feel just 'okay', scare the crap out of me.  And please continue to pray for my sister Meagan.

I'll keep you posted......


  1. Good luck and i am praying for u. My hubby has many ailments from past and present including a missing pc of skull, bad knees, fake finger, arthritis in his back and has constant headaches...he hates that he is now resorting to meds so he can work. I hope there is good news for you! Its not fun to be in pain and not happy around your kids...

  2. Good luck, my sweet! Thinking about you! BIG hugs!

  3. Praying for you! Hugs hugs hugs, anja


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