Remember this picture?
A-girl posted this on-line and she got all kinds of comments from people we both know about how great we looked. Lots of comments were about how great I looked. Comments about me being a "hot mama", for instance.
But, let's look a little closer.
Notice my sweat pants....the little bit of blue you see behind my arm is actually my pajamas....notice the strategically placed hair and birthday presents.....meant to hide the fact that I am not wearing a bra. And, if you look closely at my face, you will notice my slightly red nose that would tell you that I had been crying a large portion of the afternoon.
A-girl and I had both gone to the eye doctor for contacts.
I ended up being called back first. I told the doctor and his staff that I knew my prescription had changed because more often than not, I just take my glasses off when I am trying to see something and that I have been getting headaches - probably because I was making my eyes work so hard...either by wearing the wrong prescription, or not wearing any glasses at all.
I noticed a few whispered conversations after they took the initial look at my eyes and printed out the little paper thingie that tells my basic prescription.
The doctor turned down the lights and had me do the annoying thing they do where they ask you if 1 or 2 is better. I always feel like I am somehow failing a big exam at this portion of the eye exam. Always.
Then he turned on the lights and asked me if I had ever been diagnosed as having diabetes. I told him I had not. He then explained that my eyesight had changed so significantly, so quickly, (basically from near sighted to far sighted) that he was somewhat alarmed. He said that is usually a sign of diabetes and that I should see my doctor and have blood work done right away.....like drive over to his office right now. I told him that I have my blood work done a lot because of the problems they have had with the thyroid medications. I had my blood work done about a week before and everything was fine.
He decided to just see if he could get pictures of the back of my eyeballs without the dilation (since A-girl doesn't have her license yet) and see what would happen from there.
They successfully got pictures....and more whispered, slightly frantic conversations ensued. He said he was going to call a retina specialist friend of his and see what he said. I asked them to get A-girl taken care of because I didn't want to ruin her birthday.
They took her into the office by a different door and had me wait in the waiting room.( First I had a good little silent sob session in the bathroom.) A little while later, I was sitting in the waiting room (without my glasses) and out waltzed A-girl in her new trial pair of contacts. She was practically glowing. She was so happy. She looked so good.
She blinked at me a few times. I am sure she was thinking that I was also sitting there with my trial lenses too. Then, she looked a little closer and asked me what was wrong. I tried valiantly to assure her that all was well.
It was like she literally matured over night and wasn't just a teenaged girl getting rid of her glasses. She looked right at me and said, "Mom....what is it? What is wrong?"
I told her that they thought something was wrong with my eyes and were waiting to hear back from a specialist.
They called me back and asked questions about whether I had been getting headaches.
I had. Almost daily since before Easter. At first, I had thought that I was reacting to the pollen. It is seriously crazy down here with everything covered in a thick coating of green pollen. I said that many days I woke up with a headache.
Then he asked other questions like was I ever seeing flashes of lights or vision changes. I was sometimes seeing "sparkles"....if I stood up too fast or changed from light to dark or vice versa too quickly.
He asked if I ever had ringing in my ears. I told him that I did sometimes hear whooshing, like I was hearing my own heartbeat.
He let us leave and promised to call when he heard back from his friend. He reminded me to head to the hospital if my headaches or vision got worse.
I left super scared and was trying desperately not to ruin A-girl's 16th birthday.
They got me in with the retinal specialist on Monday morning. Rainman came with me for this one. Lots of eye drops and tests later. He declared my retina healthy, but said there was swelling at the back of my eyes at my optic nerve. I even had a hemorrhage in the back of my left eye. It was serious. Very serious.
He took out his cell phone, took a picture of the picture of my eyeballs and texted it to a friend of his who was a neuro-opthalmologist.....while he typed out his message, he said, "I don't flipping care about HIPA right now".
Then he looked at me and said, I don't even know you, but I am taking this seriously, so you had better take this really seriously. He asked what I did for work. I said I was mostly a mom and took care of a few extra kids during the week. He told Rainman to dust off his child care skills because I needed to make this my only priority until it was taken care of.
He got me in to see the neuro-opthalmologist the next day.
You know when doctors can see you too quickly how you sort of panic?
Yeah, me too.
Everyone was getting me in right away.
Rainman luckily had the day off, so he took me to this appointment too. This doctor gave us pretty much the same information as the one did on Monday, but he had a much different delivery.
As we were leaving, Rainman turned to me and said, "Somehow I feel like we just got the best diagnosis ever."
I had to laugh, but it was true. He told us the same slightly scary stuff, but his delivery was more matter of fact and assured us that it would be treatable, but I would have to remain vigilant for the rest of my life. I will have to take medicine and lose weight.
In order to accurately diagnose me, they ha to eliminate other possibilities, including a brain tumor. So, I was scheduled for a brain MRI late last week. Rainman couldn't come with me and my friends were busy. So, I went by myself.
Huge, huge mistake.
Let me just say that I didn't really think I was claustrophobic. I mean, I have never really liked bunk beds and I really didn't like those elevator pods that take you to the top of the St. Louis Arch, but I really didn't think I was claustrophobic.
After I took like 5 nervous pee trips to the bathroom, I was called back. I was told to take off my bra and my glasses, but could keep the rest of my clothing on.
She got an I.V. port ready on my arm for when they would inject the dye during the second portion of the MRI. She explained a few things, had me lay down, gave me a little panic button to squeeze if I needed anything and in I went.
It was awful.
Now, granted, I am a big lady, so I had to sort of squeeze my arms in while I went into the tube. She assured me that I could relax and rest my arms against the sides when I got into place. But, really, I felt like I was being squeezed by the tube.
Also, I should have kept my eyes closed like my friend, Sherri, told me to. I am just naturally curious and I like to learn things. I thought I would just glance around a little in there and see what it looked like.
It was just mere inches above my face. Like, at the most, 2 inches from my nose.
Like, total meltdown kind of panic.
The nice tech asked if I needed to be taken out of the tube.
I can sort of laugh about it now...but....I cried like a baby....like a crazy person. I also kept apologizing. I kept saying stuff like, I am sorry I am messing up your schedule. I asked if I could just be put to sleep (and figure out a way for somebody to come pick me and my van up somehow).
This facility didn't have a doctor there to administer medications. She said I could call my doctor, have him prescribe a Valium, drive over to the pharmacy, get the medication, take it, and wait in the waiting room for it to kick in and they would try again.
Well, that sounded awful too. So, I said that I wanted to try again. She suggested covering my eyes with a washcloth, so I couldn't look even if I wanted to. She gave me earphones (because the machine is really loud while it is is doing its thing). I asked for a Pandora station that played massage music. (Remember, I am/was a massage therapist)
I breathed deep.
I prayed...and prayed some more.
I was able to survive my MRI because I gave myself a virtual massage, stroke by stroke, while she did the tests. I was in the machine for a total of about 45 minutes.
Honestly, I was shaky and weepy the rest of the day.
Rainman called me afterwards to check on me and I started crying in the parking lot. It was awful. Really. But, if you have never been inside one of those machines, I don't think you can really explain it in a way they will understand.
If I ever have to do another one, I will make sure I am adequately medicated ahead of time. I will also make sure that Rainman is there waiting for me to give me a big hug. Sometimes it stinks to have to act like a big, tough, grown up.
Long story short, I have something called Pseudotumor Cerebri.
I am waiting to be scheduled for a spinal tap/lumbar puncture sometime in the next week or so. That should help with my headaches. I will start medications after they make sure that the spinal fluid doesn't show any other weird infection or something.
Then, I will try to lose weight.
Most of the people diagnosed with Pseudotumor Cerebri are apparently middle aged, over weight women. They don't know why. Obviously, not every overweight, middle aged women have it, but statistically it is me. Losing weight helps and they don't exactly know why.
That is fine.
I wanted to lose weight anyway.
But, well, you know.....it takes a lot of thinking....and food is my.....thing. My - go to thing - when I am happy, sad, tired, depressed, scared. You name it.
I have already started trying to be extra smart about my food choices, but it totally bums me out to have to think so much, instead of just feeding myself and my family. But, as annoying/depressing as that is, it would be way more depressing to actually lose my eye sight.
So......there you have it........social media can lie....big time....and mislead you about the fabulous things happening in other people's lives.
Because on this day, I was just trying to keep my head above water and not ruin my daughter's memories of her 16th birthday.