I am Guilty.
Ok, I was reminded I haven't posted here but once this year, it's been for a number of reasons, some I will share some I will wait til I have more answers, and right now I just have more questions.
Today I saw my wonderful neurologist Dr. Turner, a God given gift; I was perfectly prepared for most of what he had to say today so this appointment was not a shock. He referred me to a neurosurgeon for a new shunt, we will see where that goes…At this time I do not feel God giving me peace about getting another shunt, but perhaps this is the doctor who will be able to fix the Chiari, if not, perhaps upon meeting him God will speak about the shunt, one way or the other disability requires me to be compliant with seeing my docs and I am going to do that. I am a little apprehensive about this appointment but not nearly as much as I thought I would be. I had to call my neurologist back and get an order for an mri first because they will just require one anyhow, mine are all old and outdated they are about 2 years old and he would order them repeated so they suggested I get them repeated before I see him in March.
Also, I had been falling a lot, balance has been an issue for a while, but about a year ago I noticed my hands and arms going numb as well as my legs, so I asked about this issue too, Dr. Turner thinks this may be due to Diabetic Neuropathy, I was a little taken aback, my last Glucose Tolerance Test was within normal range, as a matter of fact ALL of my Glucose Tolerance Tests except the first one hour when I was pregnant with Lauren have been just within normal range (but barely, hence the reason for Monday's appointment with the Endocrinologist about my weight) Anyhow, that being said he is running a 2 hour in the morning along with some other blood work, if those come back normal I get another EMG Yippee, I do not like those, they are very unpleasant.
It's been a little over 2 years since my shunt came out, (February 1st) and in the past two years I have seen lots of changes. I have grown in lots of ways, I am learning how to open up to people and share how things are going in real life a little more, I have a few people I can talk to about what is happening with my health. I have a few really good friends that I have learned to confide in both here and online.
I have discovered that despite all I am going through most days I can still do a lot of my favorite things. I am in school still, it's VERY hard on my body, and what used to come so easily, takes much more effort to get done. But I refuse to become a statistic. PTC is not curable at this time, it goes into and out of remission, treatments work for a while, but they do not offer guaranties and they are basically only there to save eyesight not to help with the constant chronic pain.
I have an excellent support system in my husband and daughter, I have friends that I know I can count on if I need them, I have family that I can ask if I have more planning time as they are further away.
Most of all I have someone I am praying for that is going through an almost identical PTC battle and really needs support too, it helps me to pray for her needs as her shunt has potentially failed again, and she may need it replaced, She had her last shunt replaced a few days before my failed revision surgery that led to all of my complications, paralysis, and all that fun stuff, we were approved for disability within weeks of each other and while I have been diagnosed much longer, I was blessed with a working shunt or a remission (or a super high pain tolerance, any way you look at it, God let me not suffer too bad for a nice LONG time in the middle while Lauren needed her Mommy the most, I got to get pregnant and all the way til she turned 3 before I started getting sick again) So the last two years we have been mirroring each other in pain cycles. I keep praying and reading what she is doing and Thank God for the day her friend and someone I had been praying for more than 2 years before that (her daughter has a rare disease too, Christians are not exempt from hardship, my prayer list is long) perhaps one day when I go visit a friend of mine in Ohio we will go to the Columbus Zoo and I will make an effort and meet these two wonderful prayer warriors.