An update of sorts for the morbidly curious. The battle has been uphill, but I'm a fighter. I went to the eye doctor in the beginning of June to verify that there is nothing optical going on, she said that my prescription was actually a bit better from 2 years ago but that my optic nerves were inflamed (a sign of neurological issues). She wrote a report for me to take to my neurologist who I finally get to see on July 7 (believe it or not, that's actually *fast*? Typical wait time to see a neurologist is between a year and 18 months!).
June 19, Thursday night at 8 pm was my MRI. It went ok, no claustrophobia but I did feel a pulling/throbbing sensation especially around my ears. I felt like if I could just pull my earplugs out it would be okay. The tech said that sometimes happens to people, it wasn't something to get too upset about bla bla bla. I got to take a CD home, the human brain looks pretty weird and scary I have to tell you. I don't really know what I am looking at when I see it so I can't say for sure what is wrong in there. The CD is to take to my neurologist appointment.
The next night (Fri. June 20) I was back in the hospital again and I felt like my insides were literally on fire just beneath the skin, and my head was going to crack open. Ears stabbing. Could not get comfortable for anything, so I had my sister in law take me to ER and my mother in law watch the kids, as Shawn was out with his dad for a late father's day outing. We got there and I was triaged and would have been treated right away, except an MVC (multi vehicle collision) came in - three victims on stretchers, all unconscious, bleeding, heck I saw there was still glass in the one guy's arm. Drunk teenagers. So I was in for a long wait, which included watching a girl in a prom dress and no shoes come in and bitch to the nurses about how they don't make cocaine like they used to, and ecstasy was over rated, and bla bla bla. Basically had a nervous breakdown in emerg. You can imagine how quickly she got the red bracelet and was sent to the psych ward.
Dr. Mann saw me in her travels to and from patients, and while it probably isn't a good thing that I'm known on a first name basis, this time it sort of benefited me because she came right to me, asked what was wrong, apologised for the wait and said she'd get to me as soon as she could. She told me to tell the nurses if my condition worsened. Which of course it did, but by that point there were no nurses to be found. About an hour later she walked by saw me and disappeared. 30 seconds later a nurse is pulling me into a room and giving me a shot of Toradol in the hip. She asked me if Dr. Mann said I could come home after this I said I had not spoken to her and had no idea what was going on. The nurse checked and said no that Dr Mann saw I was in agony and wanted the nurse to give me something until she could see me.
She finally sees me around 4 in the morning (I got there at 11:30 for time reference) and of course very apologetic but I wasn't going to complain, of *course* accident victims come first, anyone with half a brain knows that. Anyway, she did more testing (touch my finger, touch your nose. Flip your hand this way and that. Walk a line. Do you feel this? Do you feel that?) and said "Listen, girl, I know you don't want to hear this but I think you need to seriously entertain the idea that you might haveMS. You show all the signs and there's definitely something neurological going on here." She did tell me to call the hospital that did my MRI and confirm that there was nothing urgent (ie tumor, blood clot) as my family doc is on holiday until next week. She gave me some pain killers & then something to help me sleep at night as I get no relief and night time is the worst.
So now I just play the wait game a little bit longer. If it really is MS, I'm ok with that - just tell me so we can sort it out and get me on some aggressive therapy to combat it. If it's something else, that's also fine, I just want some answers and help. I am going a bit stir crazy because I can't go anywhere without assistance, I can't drive because sometimes my feet don't work and sometimes my eyes don't work. I can't walk because again, sometimes my legs will give out or I won't be able to see. For lack of a better description, I sort of feel trapped in my own body.
Shawn has been really terrific through all of this, although you can tell it's bothering him as well, he tends to change the subject when people ask him about it. I try not to burden him with too much, but at the same time I also hate that I have to in the first place. I need an escort just to do groceries for crying out loud, and even then I have to take a long nap before, and then I pay for it afterward.
Saturday in spite of my not having had any sleep the night before, we held a glow in the dark bowling party for my son Kevin. He turns 8 on July 21, but because most of his friends go on vacation around them, he never gets a party. This year we promised him he would, so we did it a month early. He only had a few friends come but he was so happy. I was in agony but it was worth it. Celeste got to have one of her friends come as well so that she wasn't too bored by the situation, so everyone in general was happy. I ended up going to bed that night around 7 pm and did not wake up until 1 pm Sunday afternoon. My children were happy, so I was happy, but boy did I pay for it. This is something that is becoming commonplace in my life, sad to say.
This past Thursday afternoon, I went to the clinic to have my left leg double-checked. The attending Doctor taking over for my family doc asked a bunch of questions and then checked over some files, asked me if I'd been in the woods our outside much recently, and then ordered some blood testing (he wants to test me for Lyme Disease, which I find HILARIOUS) and an x-ray of my back (he isn't convinced that I don't have some post-lumbar puncture issues, ie infection or whatever). Told me to double up my meds if I was in pain and sent me home. My daughter went to my mom's house, and my son went to my mother-in-law's. Shawn was at work of course.
An hour later I get a call from my son, crying like you wouldn't believe and All I heard was "(mumble) died!" and at first it sounded like "Daddy" and my heart skipped 2 beats. I asked him to repeat himself and he said "Abby died. Please come mommy I want to go home". It turns out my mother-in-law's girl chihuahua got loose from her leash in the backyard and went running after a jogger, was hit by a car. They were inside when this happened but a neighbor saw and came to get her. So my mother in law was hysterical and my son was pretty upset - nobody wants to see a dead anything, much less a family pet.
So I limped over, got my son, limped back home. He cuddled up with me for most of the night, he was terribly upset and when I called my daughter at my mom's house she was quite upset herself. The kids understand what death means but it doesn't make it any easier when it happens. I held my son in my arms and did my best to soothe him and ignore the pain I was in, because I pushed myself too hard, but my boy needed me and nothing else mattered at that point in time. My daughter opted to stay with my mom, and that was fine. They cremated the dog yesterday. My daughter insisted on seeing her first, to "say goodbye". That was incredibly difficult but my girl is pretty strong, and has a touch of dark in her; it will not affect her near so great as my son, who thinks only on sunshine and happy things.
There is so much more to talk about but my fingers are numb again, and I need to rest my eyes.