Tuesday, March 10, 2015

intermittent thoughts on my life with PTC

I'm not a person who likes my personal anything to be public on the Internet, and even though I've had this blog for something like ten years there's only a handful of posts on it. I go through phases where I delete almost everything.  So today I was looking back on the very few older posts I have on here and read my post called "PTC Rant" from shortly after I was diagnosed with pseudo tumor cerebri/intracranial hypertension.  This was before it got really bad and I completely lost vision in one eye and most of the peripheral vision in the other.  I was so completely frustrated, but also hurting and completely devastated.  Would I ever be able to see my little boy smile again?  Would I ever be able to have another baby?  And here now, I read that post and think,  wow. I don't know how I survived that.  Oh wait,  I do.  It was God. He gives me strength to have faith in Him and fight for what He calls me to do even when every other aspect of my life is screaming NO!

Ironically - well not irony because I don't really believe in coincidence,  but this is what led to us being blessed with Ina. I remember taking a pregnancy test on my 25th birthday, just in case because I was going in for preoperative testing to possibly get a shunt to help my vision.  I was still on large doses of heavy duty diuretics.  I was told to absolutely avoid pregnancy.  That I could permanently lose my vision, or would likely die in pregnancy due to the intracranial hypertension.  To say I was terrified is an understatement. We were using careful NFP charting to avoid pregnancy until April 2010. I could hardly see anymore and doing very detailed tasks like charting were very hard.  I needed rob to do it. He helped for about a month, but it really frustrated me to lose my ability to do yet another thing. We prayed about it and decided to take a month off from charting and to leave things completely to God. The information we got in all directions from physicians and online research and support groups and so much was so conflicting, and then at the heart and soul of all of it was our faith.  We are devout Catholics, do not believe in using birth control of any kind except NFP with abstinence during fertile times to avoid pregnancy for grave reason.  Considering my risks of pregnancy were more severe blindness and death, we knew we had grave reason. But I'm so glad today that we listened to God and continued to pray for guidance and do our own research.

Truly,  if I hadn't gotten those two little blue lines on my 25th birthday, my last five years would have looked entirely different.  I never really thought about how different it would be until I reread that post. We would likely still be living in fear, me suffering in pain from the medications. I probably would have had at least one brain surgery. Realistically knowing how IH surgeries go, I probably would have had dozens of brain surgeries at this point.  Which may or may not have fixed my vision.  I probably would be physically disabled, and need lots of help with daily living and caring for my son.

The last five years haven't been easy by any stretch, but compare to the harsh reality that I would likely be blind, have had multiple brain surgeries, and not able to see my baby boy or husband or ANYTHING any more is simply a miracle.

When I was hospitalized early this year and they told me they suspected it was a return of my pseudotumor cerebri, all of those scary feelings in that post, they all came flooding back to me. So yes, the last 5 years have been a struggle but not in a brain surgery and blindness way.  And here we are blessed with 2 more sweet children to snuggle and watch them smile and spin and be silly.  And hey, I even get to watch them when they throw temper tantrums and are mad.  But I get to SEE it. I get to see that pregnancy test all those times I've taken them over the years.  I get to see how my girls looked as babies and watch them grow.

When I look back on photos of Joey during those 6 months of blindness, I don't recognize him.  But I know him.  I was there.  I may not have been able to type or even use a phone for a while, but I kept taking photos of him hoping I could one day put my hearing and touch memories together with a visible memory.

Thank God for blessing us with Ina, and for curing my vision along with the blessing of her pregnancy.  I am told I'm in remission, because intracranial hypertension never really goes away.  I hope it doesn't ever come back, but at least I know if it does, my God will bring me through the hurt, frustration, etc.  He is amazing. Rereading that post really just makes me glad that I can see. And for all of the blessings of the last five years, especially those of my babies.  

This is my story that I've told many times, but writing it down, today was the first time.

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