Wednesday, April 10, 2013

This morning I fell down a rabbit hole

This morning I took Grant to the pediatric plastic surgeon for the consult for his facial asymmetry.

I knew looking at the other babies in the waiting room that his head was fine.

What I did not expect was that the doctor would say the asymmetry in his jaw is hemifacial macrosomia.

Go on and google it. Don't google image it.

It's a congenital birth defect.

I remember there being some blah blah followed by come back and see the craniofacial team in a year. (Which includes psychologists and dentists and ENTs and eye doctors and plastic surgeons and audiologists and on and on.)

And then I freaked the fuck out.

After having a little time to freak out I called the ped. I am concerned about making a diagnosis like that without even an x-ray. The ped has scheduled us for a skull series to either confirm or deny the abnormal bone growth in his jaw. If the x-ray shows nothing then we will move on to a neurologist to make sure his facial asymmetry is not from a stroke.

In the middle of that spinning rabbit hole my own doctor called.

 I tested positive for two of the tests I had on Monday to check for rheumatoid arthritis.

And then I freaked the fuck out again.

I have to see a rheumatologist for a diagnosis. (There is a 6 week wait at the first one I was referred to.) But I have crippling pain in my left hand and foot. And have for many months.

So now I am staring down both pelvic prolapse (we all know how positive the internets are about that prospect) and a life long crippling, deforming disease. That will mean meds and on and on.

And the fear of  not being able to take care of the kids I worked so fucking hard for. Or enjoy them because walking is killing me right now.

And never being able to sew again.

I have been here before with infertility, but I am very much having a "why has God forsaken me?" moment.

There you have it.

Me in that god forsaken rabbit hole.


  1. Oh, my gosh! Take a deep breath...or two...hug those kiddos and slow down the bad thoughts.
    My prayers will be with you....

  2. I wish I could give you a big hug. It feels overwhelming tonight. Lee has good advice. She's also a great friend who happens to live near me. Hug your kiddos. Keep breathing and know that you have prayers coming your way.

  3. Wow.I am at a loss for words and can only offer hugs and keeping you in my thoughts. Hang in there...and know that many people are sending positive wishes and prayers your way.

  4. Never ever google anything medical.
    It will only scare the bejesus out of you. You overcame those fertility issues, you can overcome this.

  5. You're getting good advice here. Stop googling. Take some deep breaths. Everything is overwhelming when you first hear it. You will cope with this. I'm thinking about you.

  6. I have RA. Fear not. There is a lot that can be done to live a pain free life. Count your blessings that it was found early. That is key to a comfortable life. And once you get used to it you will will be OK. Sometimes life is not very fair..having a good team of doctors on your side will make things much easier for all of brave.

  7. oh, Sarah, I am so sorry! What a day!
    I agree with Becky, I have learned my lesson googling symptoms. Now I only do it if its something SUPER minor. like about toenails or something. ;)

    Def. get second opinion/xray for grant.

    And hey, He doesn't forsake you, but we learn from our trials (I try to remind myself of this, and apparently am not so good at the learning part...) and sometimes He wants us to ask him for help.
    Proverbs 3:5-8
    Matt 11:28-30
    Just a couple that have helped me the past couople of years.

  8. I have RA - however it has been in "remission" for about 4 to 5 years now - I had it in my hands, ankles, elbows, neck & feet. But, my doctor was great and it took a while with meds - but it was well worth it. Again - in remission...

  9. Breathe, Breathe! We are here for you.

    First of all, my mom had RA when she was young with all of us, and it went in remission. She is in remission at 73, so see a good doc. Fingers crossed for you and no more pain!

    Also, for Grant. The next step, the next step...he is a gorgeous little guy. You went through a lot to get him. Medical science is now an amazing thing.

    Look for the ray of sunshine. It will come.

    Hugs and more hugs!! Sending love!!

  10. With you in spirit and in prayer along with so many other of your friends! We've seen you overcome so much and know you will overcome this too. Behind you all the way!

  11. Sarah, it sucks BIG TIME that you have to worry about this. But--all you have right now are preliminaries, and lots of unknowns and I think those are the worst because of course we automatically think the worst. Try hard not to borrow worry--deal with the here and now, or you'll make yourself crazy. Just take it one step at a time and quit Googling--that never makes me feel better, I know that. You have a lot of people pulling for you!

  12. Just remember that our thoughts and prayers are with you and you can't fix it by googling. All you can do is take it day by day and deal with each item as it comes. Try not to play the worst case scenarios through your head.

  13. Sarah - if there is anyone in the world who CAN handle all of this, it is you. In the meantime, it sucks, and you're allowed to be ticked off.

    I agree with everyone else, get second opinions, and find a team of doctors you can work with to deal with everything.

    Prayers for you & the family as you find your way through this. xoxox

  14. Praying. Praying. Praying.

  15. Sarah, we all have a rabbit hole some deeper than others and while some days I can smile through the tears I have had two days of weepy messes. I am sending love and thoughts of strength for both of us. Sincerely, Renee

  16. Oh, Sarah, what an awful day. So many fears. I echo what another person said. All you've got are preliminaries. Nothing is permanently known. Don't go down that path. Like many others, I've had my troubles, and sometimes it's just taking it one day at a time. When it got really bad, it was one minute or breath at a time. You are a trouper (highest form of praise in my family) and drink in all the goodness from your family and the support from the blog. Prayers heading your way.


Hi there. What say you?