Work! Five days of it. I'm waiting for Univ of Colorado Heath Sciences Center to call to schedule 6 month MRI. One month from now, we will be heading to CT for 10 days to see my folks over Thanksgiving. Too much stuff to get done.
For once, I think I have nothing much going on! School work, house work, fun (and not so fun) daily routine with the kids. My family is coming over on Saturday for a Game Night get together.
I'm finally recovering from the cold and UTI of last week. I'm so glad my PCP was willing to just call in a prescription for me on Friday. It helped so much! I'm getting tired easier, but at least it's been almost a day since I had chills and sweats! Because of that, I'm going to be taking it as easy as I can for the next 3-4 days.
Not much going on for me. I have to take mom to the doctor this Friday but other than that it is just school work and normal day to day activities.
Recovering from cleaning out the garden shed last week, going to advocacy meetings all over the place, and five hours walking at the zoo.
Working on a painting representing the zoo for a state disability access book and working on a commission of a lamb.
Having my annual physical which makes me nervous since it was when my PCP saw signs which made her suspect MS in 2007. I used to just go for physicals and that was about it.
Horse back lesson on Friday which is going very well. There is so much to think about at once but it is good for my cognitive, balance, and body.
Saturday is the MS Society annual meeting. I signed up for a session on eye problems and MS.
I hope everyone has a good week Polly says hi.
Back to the crapper today, except I have this lovely jumping vision and dizziness today. Probably because I took the baclofen earlier last night and then later this morning than usual. Wow. What a difference. Can't wait for it to kick in again. Anyway . . .
Today I have an appointment with my therapist for hypnosis to calm my emotions. I can't seem to get into a relaxed state anymore and am always on high alert and unable to focus on the important things in life. If it weren't for all of this weirdness constantly cropping up all over the place it would be easier - and the lack of urgency from the medical community is hitting on some old issues fanning the flames of emotion making it even harder to deal with. I thought it an odd proposal when she mentioned it last time I was there, then had a big argument with my husband in the beginning stages of last week's flare up which got bigger than it should have - both the argument and the flare up. At that point I realized it probably was a very good idea. So that's the plan for today. Crossing my fingers it has a big impact. Hypnosis has been very good for me in the past before all of this came up, and I'm hoping it can do some more magic in regard to what's happening now.
Tomorrow is the follow up with the cardiologist on my abnormal echo two weeks ago. Hopefully he can shed some light on things and get a ball rolling somewhere. Then after that I see the GP. He's going to get an earful from me about these specialists doing nothing to try and stop this. I plan to ask him if there would be any harm in doing a full lupus panel and trying a course of steroids to see what happens. They've ruled out an infection, so what would be the harm? Right? Do something!
On Wednesday, I have the visual field test. And then later on to the infectious disease specialist for an update and report on the inflammatory tests and blood cultures they ran last week.
After seeing the MS specialist last week who insisted I needed a cervical MRI, and then having the local neuro tell me he couldn't clinically justify it, I consulted with the chiro I used to work for to see if they could. I need to get in touch with them and see what their radiologist friend had to say. If we could get my old records from the practice they were at before, they could easily justify the MRI. But they had a bad split with the owner of the practice and she won't release records of patients that are now seeing them in their new solo practice. It doesn't help that I worked there as well and her and I butted heads on many occasions. Plus, she sent me a bill for $500 after the doc I worked for left the practice. I've been paying it in $5.32 increments. No explanation needed. It's quite the soap opera. I may need to have my GP request records to get a copy of them and have that history be an official part of my overall health record in the hands of someone with a bit of ethics.
And, after all of that, if nobody can help me with some treatment now or in the next two weeks, I plan to go back to this chiro for some microcurrent treatments to reduce the inflammation in my body. It's probably not nearly as potent as a course of oral steroids, but it's something. And at this point, something is better than nothing. So not all is lost if it comes to a screeching halt with mainstream medicine.
In the midst of all of this, I need to get my son out to hunt for a Halloween costume. And then Wed. evening begins my work week. It's a light one this week, so that is good.
Exhale. :-) Hoping for good things to come . . .
More of the same for me and it is the third week of the oral drug trial.
So today I am concentrating on resting and relaxing as I have been unwell over the weekend. So far have maanged to sleep for 3 hours which is not like me when I am well.
Tuesday - supervision for counselling, and then lung function test for drug trial
Wednesday - all day at MS Clinic for potential change to drug strength and then constant hourly monitoring of all obs for 6 hours.
Thursday - start packing for hols
Friday - think of my hubbie who is collecting his medal for going to Afghanistan at a special parade (which I could not get to because of logistics of kids and it being 5 hours away up north).
Saturday - go to stay with sister when hubbie returns
Sunday - fly to Amalfi Coast, Italy for 4 nights ....can't wait
going for my second physio appt. in hopes of curing what the ENT swears is just bppv even though he didn't even LOOK in my ears.
i'll be excited to see if it does the trick (had one ear worked on a week ago, now for the second and final side....)
school routine with my boys for the rest of the week and nothing too pressing!
wish i were going to the amalfi coast!!! yay sarah!!
Seeing new neuro Wed.
I had to cancel PT for the last week or so. I've been sick. I can't seem to shake it. It seems I've been sick since the beginning of Sept. & I just want it to stop.
It's going to be a pretty full week for me, mostly with work.
Tried to close the books on Friday to have draft financials ready. New hosted software crashed on Thursday and then was down for 6 hours on Friday, which gave me no time to review them prior to releasing them to department managers. Have a number of grant reports due, with the quarter being split between to systems.
On Friday, I have an appointment at Yale New Haven Hospital with a neurosurgeon to see if I am a candidate for spinal surgery. I specifically chose this Dr. due to his interest in both the back and brain, giving him my brief background in the hopes that he will refer me to a neurologist who specializes in MS/demyelinating disease.
I hope that I don't need back surgery. The risks concern me, as well as the recuperation time. I don't have disability and cannot afford lost income.
And to make everything peachy keen, I got an email for the head of HR today saying that our health insurance provider may drop Yale. I'm going to need to keep a stiff upper lip on this one, because if I don't, my lip will start to quiver and I may just cry.
DS, the procrastinator, who is now 20 has been saying for months now that he wants to go to college. He was aiming to get apps in by Oct. 1 and has missed that deadline. Choice is now narrowed by that and he's got to get the apps in by Nov. 1, with an essay. Sent me a draft of his essay last night and he's still in the brainstorming stage. I'll be very curious to see what happens; whatever comes from me will be general guidance.
Hope everybody has a good week.
Wed. Tysabri infusion.
Other than that, it's work.
I'm dead on my feet. ZZZZzzzzz...
Neuro today, maybe he'll order some new scans. I'd love to know what's going on inside this CNS of mine as of late. Work and ramming the roads mostly. New oil tank install scheduled for Thurs. And, the weekend is jamming with birthday and christening and cleaning of course.
I'm hoping to receive a little energy along the way!
I have an appointment at the National Rehabilitation Hospital tomorrow afternoon, Wednesday, with the wheelchair clinic. I have no idea what to expect.