Am I behaving childishly? Absolutely.
Be assured that the childish behaviour will continue. I'm stomping my little foot, digging my heels in, having a little pouty fit with my arms crossed. You bet. I'm ticked!!
Diagnosis of MS via email is cold - very cold hearted. Frankly, I'm not buying into the diagnosis. Call it denial, putting my head in the sand, keeping the blinders on...
My charming neuro opthalmologist finally had his secretary respond to my email that I had sent to him last week. The reply indicated that I have been diagnosed with MS and that the purpose of my attending the MS Clinic is to confirm his diagnosis. As far as treatment, he's said that any decision regarding treatment is up to the discretion of the MS Clinic and that they may prescribe steroids or some other medication. Dear Mr Neuro Opthalmologist has clearly stepped out of the ring as far as far as attempting to get to the bottom of what's going on with my vision. That's just fine. Quite frankly, I feel like washing my hands of him too.
So, where am I headed from this point?
I've already begun the process of obtaining a second opinion.
I also have an appointment at the Stillpoint Project office to meet with Dr. Blaney. I'm really hoping that he can help me. He's well known for his treatment of autoimmune issues and I've heard good reports from one of his patients relating to how he has helped to improve their overall health.
Now I must revert back to my normal, responsible, quiet self and get on with life. Must focus on my day to day life. Today, I think I'll walk over to pick up the boys from Liz's, drop off the last of the popcorn money for Daniel's scout group and make the business bank deposit along the way. Deep breath. Smile. Laugh even. It's beautiful outside - I'm going to open the blinds to let in some of the gorgeous sunshine!
Thankful (posted Thursday, June 14th, 2012)
"Don't look it up online. No matter what you do, don't look it up online." I can't tell you how many times I've heard that. Have I listened? Nope. In my curiosity I went online to check out the MS clinic to which I've been referred. It looks like a support system for people with MS (not surprisingly given its name). BUT I HAVEN'T BEEN DIAGNOSED WITH MS!!!!! Pardon me, but: WHAT THE HELL!! I don't want to sit in a circle and commiserate, I don't want to know how to deal with MS. I don't want to meet the people working there (I'm sure they're all very pleasant, but I don't wanna - can't make me). I don't want to know anything about it yet. I don't want to walk through their doors - thank-you very much. Yikes, did I say those things?
Perhaps, after checking out the MS clinic website, sending my neuro-opthamologist an email asking questions to which I don't think he has the answers, wasn't my best decision yesterday. He hasn't even responded and I know he's in his office today. What am I to do? Wait? Hang tight? Sit quietly with my hands crossed on my lap like a good girl? Bullshit. Those of you who know me, know that I'm utterly incapable of just waiting without taking any action. Patience is not one of my virtues.
I need inspiration.
A plan.
Guidance.
Recently on Mennonite Girls Can Cook, a blog that I follow, one of the contributors discussed dealing with daily problems, both large and small. Here are some points I've gleaned:
1. Realise that a problem free life is an unrealistic and false expectation. It sounds very negative, but it's true. Troubles will happen. Life is still rewarding and full of joy even with the problems that come our way.
2. Begin each day anticipating problems and at the same time mentally prepare for them. When problems are expected, they won't blindside me. I don't want to sound like a pessimist, but consider this: a tree that has been buffeted my many storms is prepared to suffer through many more. If a tree has led a sheltered and quiet life, it will fall in the lightest storm that first comes its way. I am the strong, prepared tree. I'm in the middle of a tempest right now and frankly, I'm okay. I'm still standing tall.
Well, I'm feeling a little better now. I'm going to make some phone calls and see what I can do about my situation. I'm not angry, not ticked off. I'm glad that I'm able to make the calls myself, that I can still have some amount of control over my life. I can deal with this, it's not so difficult. Day by day, problem by problem.
"You Have... Oh Wait, We Still Don't Know" (posted Friday, June 8th, 2012)
The MRI performed on Monday revealed that there is indeed some white matter present on my optic nerves as well as other parts of my brain. Not enough to completely confirm MS, but enough to raise suspicions that something is amiss. What though? With the decreased likelihood of a virus being the cause of my troubles, they're now focusing on autoimmune diseases. MS hasn't been ruled out, but Devic's disease has now been thrown into the ring as well as "some other rare autoimmune disease". Some other? Isn't there a simple test to determine what's happening?
So, now I wait to hear when my appointment at the MS clinic will be. Apparently, that's where I'll find out the extent of the nerve damage to my reflexes and hopefully point us in the direction of determining which autoimmune disease it is that I have.
Is there any good news? Yes, there must always be a little good news. Right?
My colour vision has improved. Not back to what it should be, but it's not terrible either. Just don't ask me to determine the difference between pink and lilac. I can't see them. They're grey. But yellow, red, blue, green, orange (sort of) are back in strange and bizarre ways. They all look a little "off", but at least I can see things in more than various shades of oatmeal.
I have also had a significant improvement in seeing things that are in close proximity to me. Paperwork, books, food on the cutting board, my ukulele - all these things are quite clear. The white still creeps in a bit in its effort to overtake dark letters when reading, but I can read without too much difficulty.
The news relating to my long distance vision isn't so rosy though. It has worsened since last week. Damn. I was feeling quite positive about going through the eye chart and was quite deflated when I couldn't make out the next row of letters; a row that I had been able to see with a little difficulty last week. Yesterday, I questioned whether there were letters actually there or not. I couldn't even see the shape of them.
Good Morning Toothbrush! (posted Thursday, May 31, 2012)
I'm on top of the world this morning - I was able to see my toothbrush! Let me put this into context: on the weekend my toothbrush had essentially disappeared, to the point that I put the toothpaste on the wrong side, only to realize my mistake when I put it into my mouth. Ha!
Yellow's back again as well. I saw it briefly Tuesday morning, much to my delight. I hope it stays around for more than a couple of hours this morning. Even if it vacates the building again though, I'm hopeful that I will see it again soon.
It has been a busy couple of weeks, trying to get to the bottom of what's going on with my sight. Here's my timeline of what's been happening:
Monday, 5-14-12: noticed that my computer screen looked a little odd. It was as though the white background was trying to engulf the black text. Yellows and light colours seemed blindingly bright, while the dark colours appeared darker than usual.
Wednesday, 5-16-12: made optometrist appointment for following Tuesday
Friday, 5-18-12: called optometrist in desperation to see them earlier - no luck
Monday, 5-21-12: beginning to have difficulty driving, Daryle had to take over
Tuesday, 5-22-12: optometrist suspects optic neuritis - referral to Dr Anderson at St Paul's Hospital (SPH). Eyes otherwise healthy, field of vision not good, prescription changes ineffective, borderline for driving.
Wednesday, 5-23-12: vision worse this morning. Saw Dr Yang @ clinic (recommended going to emergency to get to a specialist more quickly). Back to work for morning, then drove home to park the van. Walked to have hot-lunch with Daniel. Daryle picked me up from the school and took me to emergency. ER sent me to Dr Tsuyuki who came to the same conclusions as optometrist and recommended that I see Dr Anderson as well. In the meantime I heard from Dr Anderson's office and had an appointment for 9:00 the next day.
Thursday, 5-24-12: vision worse this morning. Appointment with Dr Anderson was frustrating in that I had to go through some tests for the third time in three days: field of vision, colour plates, basic eye exam, etc. Was hoping to have some different tests performed, but such was not the case. Dr Anderson wanted an urgent CT Scan done, but his receptionist wasn't able to get anything before June 7th. She was able to make an appointment for a Vision Evoking Potentials test for the 28th and a followup appointment with Dr Anderson for June 7th. Very emotional night - felt like I was going blind and the medical system just didn't give a damn. With my vision diminishing each day, I was truly panicking.
Friday, 5-25-12: better grip on myself today - not quite so emotional. Made arrangements for a CT Scan at office in False Creek in the afternoon (love the private system, too bad it's so expensive).
Monday, 5-28-12: VEP test (alternating checkerboard) this afternoon. After the test Ted made arrangements for me to follow up with Dr Anderson the next morning at 8:30.
Tuesday, 5-29-12: Saw yellow for a few hours this morning! Also saw whole birds in the sky, instead of the glimmer that a bird may have flown by, that I've been seeing lately. Dr Anderson's office. VEP test showed that the signals from my eyes are delayed in getting to my brain, indicating demyelination of optic nerves which falls in line with either a viral infection or MS. OCD test performed again to check retina. Scheduled for Goldman test on June 7th and need to arrange an MRI.
Wednesday, 5-30-12: no improvement this morning. Trying to make MRI appointment, no success yet. Hope to hear tomorrow about appointment.
Throughout all of this activity, I've been trying to keep life as normal as possible, working whenever I can, exercising, cooking and caring for my family. All of these have been challenging. At work my screen settings have been changed to high-contrast, extra large font in addition to using magnifiers. I've been itching to use my new Zumba DVD, so I tried to follow it the other night - hilarious. So I had Daniel join me in the hopes of following his moves. Wrong, trying to follow an uncoordinated 8 year-old's moves while keeping an eye on the screen was dizzying! Even cooking is different. For example, I can't see where the knife blade is on a tomato or how big the slices are. Also, red and brown look the same (a big issue when cooking burgers). Personal care has also presented a few challenges: I can't see my own face and nails, let alone see Andy's nails well enough to trim them. Perhaps we'll be heading to a salon for a pedicure in the near future. There's gotta be an upside here somewhere.
Today, I'm just hoping to hold onto the colour yellow and not use my magnifiers quite so much. Fingers crossed.
No Less Alarmed (posted Tuesday, May 22nd, 2012)
Well, other than being assured that my actual eyeballs are fine, I'm no further ahead in figuring out what is happening to my sight.
My optometrist performed all the usual tests (checking blood vessels, peripheral vision, pressure, prescription...) and found nothing conclusive. Here's what was discovered: my vision has rapidly deteriorated to the point where if it gets any worse I need to stop driving. My vision is now border-line for being able to operate a vehicle. Yikes. She didn't want to speculate as to the cause of what is going on, but used the term optical neuritis a few times. Then she stopped talking, saying that she didn't want to unduly alarm me. Too late - I'm already there.
I hope to hear from the specialist soon. Before I can't see at all.
I don't want to wallow, but... BLOODY HELL!!! I have things to do, I'm just getting going, picking up speed. These are some of the things I was looking forward to in my life in the near future: becoming a cub scout leader, volunteering on the school PAC, running again (just bought new funky runners), continuing to manage the office at work, possibly participate with Andy in a documentary that I've been contacted about, participate in a focus group on property tax assessment... the list goes on and on. I don't have time for this!!!
Deep breath. I need to focus on the here and now. I'm going to sign off, finish some work at the office, pick up the boys, and then make dinner. I'm not deeply religious, but I feel that we're given what we can cope with. New realities become our revised version of normal, we carry on. We have to, the alternative sucks.
My optometrist performed all the usual tests (checking blood vessels, peripheral vision, pressure, prescription...) and found nothing conclusive. Here's what was discovered: my vision has rapidly deteriorated to the point where if it gets any worse I need to stop driving. My vision is now border-line for being able to operate a vehicle. Yikes. She didn't want to speculate as to the cause of what is going on, but used the term optical neuritis a few times. Then she stopped talking, saying that she didn't want to unduly alarm me. Too late - I'm already there.
I hope to hear from the specialist soon. Before I can't see at all.
I don't want to wallow, but... BLOODY HELL!!! I have things to do, I'm just getting going, picking up speed. These are some of the things I was looking forward to in my life in the near future: becoming a cub scout leader, volunteering on the school PAC, running again (just bought new funky runners), continuing to manage the office at work, possibly participate with Andy in a documentary that I've been contacted about, participate in a focus group on property tax assessment... the list goes on and on. I don't have time for this!!!
Deep breath. I need to focus on the here and now. I'm going to sign off, finish some work at the office, pick up the boys, and then make dinner. I'm not deeply religious, but I feel that we're given what we can cope with. New realities become our revised version of normal, we carry on. We have to, the alternative sucks.
Nervous, Worried (posted Tuesday, May 22nd, 2012)
I'm going to see my optometrist at 11:00 this morning. Best case scenario: give it time, your sight will get better in a few days. Worst case scenario: you've permanently damaged your eyes and you're going blind (little melodramatic - no?)
This has come on so suddenly. I noticed it when I began work last Monday morning. It got progressively worse through the week and I've got big problems this morning, just over a week later.
My reality is such that I can barely see my computer screen - I can barely see the words I'm typing. Colours are slowly vanishing - they've been reduced to various shades of grey. On the weekend, for example, when I tried to play I-spy with Daniel, I couldn't tell that the item he was spying was even green - it looked dark grey to me. This morning I thought I had taken my dark blue sweater out of closet and only realized that I had my grey sweater on when there was no tie to wrap around me.
I took the family for a drive yesterday. I wanted to "kidnap" Daryle and the boys and go to Fort Langley. But as I drove along it became such a strain, both on my eyes and on my nerves. I was unable to see how much fuel I have and the speedometer is very difficult to see. I felt worried that I'd miss observing some critical event that I should be able to avoid, but wouldn't be able to see and react to quickly enough to avoid an accident. I asked Daryle to drive and after we switched seats I quietly cried, tears welling up.What am I going to do if I'm going blind?
I need to be strong - I can't let anyone know I'm so worried. But I don't think I can carry on hiding it for long.
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