Well this last week has been a very busy one for us. Last Wednesday I finally got a call from my neurologist's office and unfortunately the nurse had no information for me. Guess I didn't understand why she called if she didn't have any answers. Maybe because I had called everyday for 5 day leaving messages, LOL. When I started bombarding her with questions on the phone she pulled up my record and she did tell me "oh I see you were suppose to be on Zantac while on predisone and Ibuprofen".......um, I'm almost done with the treatment and NOW you tell me that. Great! So all the questions I had left for them the last few days and including the ones I had just hit her up with on the phone still no answers for, so she was going to ask the doctor and get back to me. Well I wasn't holding my breath, lol. Surprisingly enough she called back the same day as the doctor wanted me to go in for a MRI, due the recent function loss in my legs (again left a message 5 days ago stating this, grrrrr). Thankfully the day wasn't a total wash as Dan & I had a date afternoon, we went out for lunch and then we went to see Extraordinary Measures, what a good movie. Some of the movie hit really close to home and it was heart breaking to watch but I thought they captured the aspects of being a parent to a chronically ill child and being a doctor to a chronically ill child very well.
On Friday I was able to get in for an MRI, which was terrible. I was actually looking forward to some down time (how sad it that) and maybe even catch a nap as the test was to be 1.5 hours, of which I can't move AT ALL. I got this terrible headache in there. I had thought my head was splitting open. I have a high tolerance for pain but this was unbearable. So I had them "pause" the testing and they were able to put a foam wedge under my head which helped enough for them to finish. PHEW! I left there in tears....tears of fearing what is happening to me, what are they going to find, what are the not going to find. A MRI is bittersweet with this disease, as you hope they find something so you have merit to feeling like you are losing you mind, soul and body BUT hoping they find nothing as this just means more damage. Stuck between a rock and a hard place!
Saturday Avrianna had a swim meet in Clintonville that the whole family went to go cheer her on. It wasn't the easiest feet to get everyone on the road at 5:30am but I did it. KEEP ON KEEPING ON! I'm so glad we did. She did awesome. Way to GO, Avrianna. Danny enjoyed getting out and watching he sister swim too. Plus we had Papa n Claudia show up so Avrianna had a nice cheering squad :) She was entered in 6 races and placed 3rd, 2nd, 8th, 14th, 22nd and only DQ'd on one...BUT the one she DQ'd on she got to the wall first so she won the heat :) After the swim meet Avrianna went to a girlfriends house for a sleepover. Dan and I went out to dinner with some friends and Danny hung out with his nurse. It was a busy but great day.
I got some of my books that I ordered for living with MS and changing my diet to a low fat diet to help with the symptoms. So I've been busy looking at recipes and reading up on challenges n changes in life with one that has MS. I'm not one to sit and await around, I don't have a life style for that, and I'm not one to throw in the towel when one thing doesn't work so I've been working and researching on how I CAN change my life. I know all to well how "accurate" these doctors are so I am not going to let this set back get me down. I will KEEP on KEEPING on till I get the answers that I NEED. With that being said, I called on Monday to see if the doctor had seen the MRI I had done on Friday. His office had called me after hours even, WOW, to let me know that he had and what he "saw". Well he didn't see any new "issues" with my spine or back, yea me. So I asked what about in my brain? Well they didn't do any images of your head.....WHAT? Now wouldn't you think that if I have known lesions in my brain and am having a major relapse that you would want to check it out? The nurse said "well the Dr says that the spine is "precious real estate" as he has probably told you already how important it is to have a clean spine image". Ok and my brain isn't? Where the hell do they get off? Plus thanks alot as I have lesions in my spine, but there just isn't any new ones with this replase, so glad you slapped that in my face. I then ask so where is this relapse coming from..........I get the brain as an answer from her. WOW ~ that took a college degree to figure out. I so can't wait to see the doctor for my follow up appt on Tuesday. I already have a 2 page list of issues that I have with his office and questions about my MS.....and believe me they WILL get answered when I'm there. Then I will make sure he signs over my care to another physician in his clinic as I'm done with these games. It's GO time!!!
Avrianna along the way had gotten this cough, that's just a cough, and won't seem to go away mostly during the night. She'll cough here n there during the day but at night it's the killer. Well I think she shared it with her brother. Gotta love that! Danny woke up very junky today, low sats, didn't tolerate Mr Jiggles well, very pale, and then to top it off he threw in a seizure a few times. There was no holding back today! Which is all ontop of a nasty ear infection we've been trying to clear up the last few days. Grrrrrrrr! She's sleeping peacefully and I'm hoping the coughing doesn't start up. He's now sleeping peacefully on 2 liters of oxygen and I'm hoping he improves by morning. Wishful thinking, I know but can't a girl dream?
Tomorrow Dan and I are going to try and spend some much needed time over at the old house. We have someone that might be interested in it and it's a disaster inside. With all that has been going on with me it just wasn't a priority lately. So I need to get it cleaned out and cleaned up alil before we let them in next week to see it. We pretty much just moved the stuff we we wanted to the new place and left the rest to be donated here there and everywhere in the old place. I would be so embarrassed if someone was to walk through it now, YIKES!
I have started another story about my life and where I am today in hopes that maybe it will help someone someday. I'm not a writter but once in awhile I get this wild idea and there's no holding back. I can't wait to share it with you. It's been great therapy to just write :) To see my first lil story click on the link to the left in Our Stories titled My New Dreams. I've titled my newest story My New DreaMS ~ The Box of Chocolates.
Don't forgot to pledge in your donations towards the MS walk I'm doing in April! Please click HERE and that will get you to my personal page where you can donate or join my team and help walk along with me to help raise money to find a cure for MS. I can only hope that I will be able to see it in my life time :)
Thanks for stopping by to check up on us! Please leave post a comment or sign our guestbook to let us know you stopped by. We LOVE hearing from you too. Happy Valetine's Day if I don't post before then
"Life is NOT measured by the breathes we take, but by the moments that take our breath away"