It is so hard to believe that it’s already 2016! So much seemed to happen last year, especially the last two months. There’s me, aren’t those socks absolutely adorable?! So that’s me…as we started our journey into the world of fertility treatments. Now, unfornutely my body has a sick and twisted sense of humor and that’s about as far as we’ve gotten. I am still waiting on a new cycle to begin so that we can do baseline testing. Because after visiting with our new RE, pretty much our only option to becoming parents is IVF. And, we pretty much have one shot at it, because IVF is kinda crazy expensive. It’s like $13,000 a cycle…and that’s just the cycle itself. That doesn’t include all the testing and scans leading up to that cycle…which our insurance pays zip of! So, to say I’m stressed about it, is a bit of an understatement.
I also start this year off no longer a Lupus patient. I had a big meltdown over it too. I spent years trying to get answers for what was wrong with me, thought I FINALLY had it figured out. And then was kinda slapped in the face and informed that what I was originally diagnosed with…pseudo tumor cerebri…is what I actually have.
Eight years ago, I was diagnosed with that. After having spinal taps done to drain spinal fluid every other week, I was told that I needed to have a shunt surgically placed in order to find relief. So I was referred to a neurosurgeon. And everything seemed to be headed towards me getting better. Then the day I went to have my final pre-op visit & to schedule the surgery, the doctor said he had a bad day in surgery trying to repair a shunt, he was no longer convinced I even had PTC, and was sending me back to my neurologist. So, that went over well with my neurologist. I was doing yet another spinal tap when it went to Hell. He had gotten the needle placed and did a pressure check, as he was sliding the pressure gauge off, the needle slipped. He spent another 45 minutes trying to get it replaced. It left me with a nasty knot of scar tissue on my spine. He then pulled the needle completely out and said that I would have it done at the hospital under x-ray. When I called to find out what our next step was, I was told I was no longer a patient of that doctor’s. It was just the beginning of my disappointment when it came to doctors.
So, my primary gets me a referral to a new neurologist…literally one of the best in my state. And he completely disagrees with the diagnosis of pseudo tumor. BUT, never once did a spinal tap to check the pressure of my spinal fluid.
Fast forward eight years, and a trip to a reproductive endocrinologist and I decide that I need to find a really good rheumatologist who will work with us through this pregnancy that we’re trying so hard for. And he’s like…yeah, I don’t think it’s Lupus. And even though I’m not crazy about this guy’s bedside manner…seriously, is the first class of specialty medicine “How To Be A Dick 101”?!…he is a good doctor who is extremely thorough. 13 vials of blood thorough! And he recommends that I go see a opthamologist to see why I’m having such issues with my eyesight…I’m almost completely blind in my left eye. So, I go see one…and after all the testing he does, he’s like yeah, the damage to your optic nerve indicates something called pseudo tumor-and I cut him off. Completely fall apart like a crazy person in his office, total nut job, and give him this longer than he’d like, but short version of my story. And he’s like…yup! That’s what it is. So now, I’m headed back to a new neurologist.
And after having my blood tested for just about everything that it could be other than PTC, and having a biopsy done on my rash to see if it is indeed a malar rash or possibly Rosacea, I really don’t think that there’s any doubt that I do in fact have pseudo tumor cerebri and not Lupus. I’m a little bitter, especially when realizing that if my second neurologist hadn’t been so dismissive and done a simple spinal tap of his own, I might still have my sight. But, I think I’m handling it very well. Swung by Build A Bear and made a storm trooper & Darth Vader bear…took the Darth Vader one to see the new Star Wars movie, bought a book about IVF, and used the incredibly emotional month as an excuse to not do laundry. So, seriously, I think I’m doing very well with it. lol
So, I am just done with 2015 and ready to get this new year started and get everything going. Hoping to be able to work out all the finances associated with IVF, hoping that it goes well for us. Hoping that the new neurologist can help, because I’ve decided that I will not be having a surgery for shunt placement this time. Hoping that this year is absolutely amazing!