When a 28 year old "child" calls home for help, it gets your attention. And when a child who has had to fight for her health her entire life calls for help saying she is now going blind....it sets in a PANIC!
I thought my stomach was going to come up through my mouth! I could hardly believe my ears....I tried to sound as calm as I could...What do you mean-going blind? What is going on?
She said, "Well you know how I was having headaches all the time while I was at your house?"
She explained, "When I got home I went back to the eye doctor and told him that I thought something was wrong with the glasses because I can hardly see. And so he double checked his notes and the glasses and said that everything was correct. So he had me go back in the exam room to look at me again...and he could not get me corrected better than 20/200 at the very best. So he called his friend a neuro-ophthamologist for an emergency appointment. I went and saw him and he said that the muscles behind my eyes are deteriorating for some unknown reason and I am going blind. He called it something...but I can't remember what right this minute. Mom-can you come up her now?! I need help, I can't take care of my kids and I am scared."
Of course...I said yes. I immediately packed clothes, my computer (still had to work even though I was remote). I was driving 1100 miles instead of flying because I was certain I would need my car. I was supposed to leave the next morning...but with that going on who can sleep? Not me! And so 2 hours after she called I was on the road driving for 19 hours straight to get to her ASAP.
The entire trip there I went over a million things in my mind. Every detail of her life and medical history. And by the time I got there, I was absolutely convinced that she needed an endocrinologist to test her growth hormone. There was one glitch....no one would believe me. So I went there knowing that I would have to sit back for a little while and just be the old lady support...until they let me take the bull by the horns.
Now you don't know me...but I don't sit back very well...I am a can-do, take charge personality...so I failed at what had been good intentions...but I really REALLY tried.
It took me a few weeks but (with the help of my wonderful husband who told Bryan that if anyone knew what they were talking about regarding Missy's health it was me....[thank you sweetie!] I was able to finally convince my daughters husband to push her try an endocrinologist.
Thankfully Bryan was successful and she was seriously desperate. She agreed to see an endocrinologist. Finally! I was making some progress...or so I thought.
So we had to work within her Insurance realities.....it took a few weeks but we did manage an emergency appointment with an adult endocrinologist who was highly recommended and on her Insurance list.
In the meantime, we kept all the curtains closed in the house- light sent her head into severe pain....we kept only a minimal amount of candles going at night....sounds were kept down (and with one 4 and one 5 year old little boys...that was tough!)...I got the kids to school, gymnastics etc. and played mom to the boys and to my daughter while her husband kept the income going/insurance covered/ and tried to hold his family together. I constantly searched the Internet at night and fought with my daughter on what to investigate or not. She lived for her next dose of Tylenol etc. the pain was relentless.
Finally, came the day of the endocrinology appointment. Bryan, Missy and I loaded up the boys and headed an hour and a half (one way) to this "guru"....Amazingly we waited only a brief time before being led into a room. He came in and we handed him all the records and tests from years of her health stuf.....He literally flipped (not studying) the massive time line of events and symptoms we had built, glanced over some of the labs....and then he said that her endocrine system "is not responsible for her current condition."
Bryan and Missy both looked at me in shock. Being young, they really did not know what to do at that point- so I spoke up. I asked questions like; What about her symptoms?, What about her thyroid? What about her progesterone level?
At this point the doctor seemed curious or annoyed (I could not tell which and really did not care) ....he asked if I was a nurse...UGH!!! (We need health care reform? How about ego reform!)
I said, No.
Then he looked at Missy and asked her, Are you pregnant or could you be pregnant?
She said, No.
Then he said that progesterone had nothing to do with anyone who is not pregnant...
AAHHH---at that point I realized that this simple/non-medical mom knew more than he did and he was not going to be receptive to me......so I sat back, crossed my arms and shut up until we could leave. Ultimately, he said that all of her problems were nothing in his area of endocrinology and best of luck.
It was a waste of time. He had no clue. To say we were disappointed is a HUGE understatement.
So we loaded everyone up, put the sunglasses and scarf around her eyes to protect her as much as possible and got her back in the car....to head home.
I just wanted to scream and beat someone at that point. We all did. My son in law probably wanted to beat me because I kept pressing and pressing my daughter. We were caught in a cycle of "what?"-"don't know"...-"isn't my area".....etc. And nothing was stopping her pain nor rapid vision loss.
By the time I had been living there for about 2 months, we had taken her to MANY doctors....and were still getting no where...it was terrifying as she just got worse and worse each week. Then my phone rang and it was my dad....