...and just like that, vision restored. I'm amazed, and once again, grateful.
I made a deal with myself today, and that deal is: to celebrate small victories. I get so mad sometimes (starting to be more and more difficult to blame steroids!), when things are just piling up. Today it was United Airlines. Yesterday it was traffic. Not just "traffic" as such, but the foundation of my irritability stems from feeling compelled when I was just starting to look for income, to take on students that were far away. In the beginning, you kinda just have to take a chance, and go where the students are. So of course I was delighted to get TWO students in this one area, that is approximately an hour away. Two students is not a lot for such a crappy drive, where there is traffic pretty much at all hours. One student, a 30 minute lesson, is arguably not worth the paycheck...Two, made me at least feel better about the wasted gasoline. BUT, not two weeks after getting that second student, the first one informed me that he wanted to take the summer off. So there I am, driving an hour or sometimes more, for a 30 minute lesson. The worst part is sitting in bumper to bumper traffic the whole time, with nothing to do but mull over the situation.
It's easy to fall into the trap of feeling out of control, and feeling depressed, while feeling sorry for my own "bad luck". Because in times when more things than not are being "challenging"...I want to remember the things that ARE working, and that are going well. I AM getting students that like me. And that is step one. Step two, is getting them to like me enough, that when fall comes they will prioritize the lesson to the point of being flexible with days of the week. That way, I can at least TRY to consolidate the far away students, and maybe save a penny or two by only driving once or twice a week to these areas.
My neurologist's office called today, to tell me that the doctor has filled out the parking placard form that I sent her. I wasn't sure she'd do it, because maybe I'm not "disabled" enough. But after these past few weeks, I think I've figured out that it is not about being incapacitated. It's about overcoming the simple things that due to a condition can suddenly, and without warning become huge obstacles. Looking back less than a month, there were enough days where I felt like I couldn't make it to the kitchen, let alone the postoffice, or grocery store. Every activity needed to be preceeded by a nap. :-( That is another decision I've reached - it's ok to have a disabled parking placard. It's for my own good, so that I can have it handy when I need it. The victory - having a neurologist that listens, and is actually helpful.
Lauren told me today that she and the puppy school ladies are throwing me a Bridal Shower! How exciting is THAT?? I feel so super lucky to have found such great friends in the relatively short time we've lived in MA. All the fun wedding stuff is starting to happen, which means we're getting close! 64 days to be exact! It's amazing really how, for every one item crossed off the to-do list, three new items appear. Be systematic, Ann. Be systematic. You've made it this far without going crazy...(sorta, depending on who you ask? So...just don't ask Terence...?) I'm practically broke from the preparations, and dreading the due dates for the MRI bill, the ER bill...they are enormous. And somehow, I need to have substantial money left over to switch over to a new car insurance by August 12th.
I am having a hard time with Terence's new schedule. I mean, when I say I'm having a "hard time", I really just mean that it's a bigger adjustment than I anticipated. His schedule hasn't been really clear up to this point, just a lot of overnights. It sounded pretty good at first, but one has to consider that pretty much the whole next day is spent sleeping. I get up when he is just coming home, and then he gets up around the time I am going to teach. On paper, it seems exciting, but in reality it is definitely a challenge to have him not have predictable hours. I purposefully avoided and turned down quite a few students to make sure I was making enough time, and saving the weekends to spend with Terence. But two out of 4 weekends he isn't going to be around. Which is fine...but do I take the students now? They'd be EVERY saturday. I guess that is the issue when one person has a set schedule, and one has the opposite of a set schedule. I really hope he can be happy at this job. It has been such a long road of internships and terrible working conditions, that he really deserves to feel secure and settled with a decent paycheck to boot. It has to be extremely challenging to come from a series of internships where you're constantly being told things aren't good enough (because you're being TAUGHT, supposedly), to a position where you are a peer, an expert. I'd imagine it's a tightrope walk between humility(not overstating experience and expertise) and assertiveness (using what you know with confidence, and realizing you deserve respect.) I am so proud of him for getting himself to where he is today. I have a nagging feeling (even from before) that the clinic itself may not be as organized as they should be. They did string him along for way too long before making the offer, making it hard to remain professional with the other job offers. I don't trust them entirely, but I am sure Terence can make it all work out. He's good like that! :-)
Alton Brown is chopping a red onion. It looks very very awkward. Now he's chopping a garlic clove. That looks strange too. He kinda looks like he's never done this before.
Tomorrow, I shall tackle United Airlines again. They made me buy a trip I didn't want with my mileage points. And so I want to cancel it. And they want to charge me $150 bucks...for my FREE trip. It's the dumbest thing I've ever heard. If they really won't budge, I simply won't be showing up for my flight, since that is the only truly free option they are giving me! I already booked a JetBlue flight for myself and Amelia. Which reminds me, I need to call JetBlue and let them know she is coming on the plane with me. I am very curious how she'll do! Hopefully she will be just as lazy and sleepy as she always is.
Friday, July 30, 2010
Monday, July 26, 2010
The eye is getting worse. I'm almost 100% sure it's optic neuritis again, and I'm praying it will just...stop getting worse. I am going to write an email to my neurologist, asking if it's "normal" to have this many symptoms back to back to back. I feel like I'm all over the place. Steroids are over...I wonder if they'll want to put me back on??
I took Amelia to her Good Canine Citizen class today. It's fun, but so exhausting. It's also a million degrees in that store, and I usually feel wiped by the end. Terence was working tonight, so he couldn't be there. We cruised around the store with a shopping cart as part of an exercise. Amelia did great, but I apparently could use some lessons on how to drive an unruly shopping cart. She was a good little Muffin, for the most part. She did a good job staying, and waiting, (and drooling....) and watching. Her flight to CA is coming up, so we will definitely be practicing the staying. I'm thinking I'll bring her bed to a couple of different places, to work on getting her to relax in a stay position. She did fall asleep on the subway yesterday, so I'm hoping the plane will be no different...just six hours!!
I'm hungry, but I don't know what to eat. Maybe that means I'm not really hungry. It's pretty late, so maybe I should just go to bed. I didn't get a chance to get on the exercise bike today, and I actually kind of missed it! I taught 3 lessons, and went on a manic hunt for missing stamps in the apartment. I'll just add them to the seemingly infinite list of "things that are nowhere to be found."
I'm still marveling at my friend Mel's amazing situation. Diagnosed with MS seven years ago, and UN-diagnosed just recently. I can't even imagine what that would feel like. Wonderful, I suppose, yet strange - knowing you've taken some serious drugs for a seriously long time, for a disease it turns out you don't have.
Speaking of, I should take my shot. I took it in my left arm last week, and the result was a gargantuan bruise. Like....HUGE. Not sure why it happened, but it looks amazingly awful. Like I got hit with a seven iron. Note to self - do not inject in the arm anywhere close to the wedding date.
Thursday, July 22, 2010
Can I brag?? Thanks.
Being someone who always has major issues with computers, phones, printers, I am extra super proud to report that in the past 7 hours I have:
- Fixed my browser speed
- Removed unnecessary start-up programs
- Cleaned excess clutter, and lastly
- Banished "Internet EXPLODER" from my life
I have also come to realize that I probably have a mild case of Optic Neuritis in my left eye. It's been feeling like it's wanting to shut (but apparently not looking like it, thankfully?), and been kind of painful to move around...but after the past few weeks, I wasn't really even registering that kind of pain. Interesting. It literally just hit me now, that I remembered the sensation from back in 2004. Sucks!
The state of Indiana is abbreviated "IN". I know this now. I did not know that when addressing an envelope last night. But as I was drifting off to sleep I reached over to turn off the light, and there it was. A random address of a jewelry store on the back of a bridal magazine. INDIANA = IN. Grrrr. In an attempt to not have to waste a million dollar envelope, I am altering how state abbreviations are written. INDIANA is now... "IND". If the postman can't figure it out (either by that, or the fact that the city is Indianapolis!) then so be it.
Where is my mom? She always picks up her phone, but didn't last night. I'd try again, but it's way too early on the West Coast.
The to-do list is long today. I'm still way behind on LIFE, from being sick. Sue and Brian are coming over for dinner, which I'm really looking forward to! But before that, let's see if we can't cancel that wayward United Flight, switch car insurance, scoop some litterboxes, furminate some animals, do some laundry, get my work-out in, and...maybe remember all those other things that I have just now forgotten.
Wednesday, July 21, 2010
Holy smokes. Remind me to never utter the words "it could always be worse", ever again. What the hell happened to me??
Looking back on these past few weeks, I realize how indescribably lucky I've been, in terms of my health. Sitting here now, feeling pretty close to "normal" again, I can't even believe the things I was feeling a week or two ago. I felt insane, to say the least, with my legs kicking, my skin feeling like it was on fire...my hair felt like someone was pulling it out, my left leg was on strike, my right arm was asleep...
Things weren't really adding up. Quantity of symptoms, well, THAT was adding up...but things just weren't making any sense. I was under the impression that MS symptoms came one by one, and subsided after a while. (Even getting the diagnosis in 2004, I guess I've never really "had" MS before!) But looking back, two months ago I was itchy all over. One month ago, I was feeling like I was about to throw up for about a week straight, which I assumed was the new medicine. Wrong. At that same time, my vision was crappy. Oh! And I almost forgot! I lost my voice back in May! What was that about? And the insomnia...that was the worst of all, because it gave me all that extra awake time to think about what a possible nutcase I am...
When it's all laid out like that, it's no wonder I felt like I was losing my mind. I really started to question what an actual, clinical "hypocondriac" personality was like, and if there was a chance I could be one. When you get the diagnosis MS, they tell you it can manifest in a million different ways, and that no two people have the same symptoms. I also didn't want to be the asshole patient who assumes that EVERYTHING that happens is MS, nor did I want to overlook any of these strange things that were happening.
All the while, my underlying anxiety is and has been for years now, that my blood pressure will give me a frikkin' stroke.
I have new respect for the medical field. I have found a Neurologist who not only SAW me, but enabled me to have an MRI within two days. Granted, what she found on the MRI wasn't so fun (a cluster of lesions in a critical nerve area of the neck), but she guided me through the nurses and coordinators, via phone and email, responded to my questions, and within a day I was scheduled for the IV solumedrol infusions.
They went well. I was nervous. I had heard bad things. But, again, looking back at the past couple of weeks, I feel so lucky. I went to the infusion clinic the first day, and then because it was the weekend, it was the ER for the next two days. Back to the infusion clinic for the final 2 days. All the nurses were great, and it was a pretty pain free experience, at least compared to the pains I was trying to get rid of. I tolerated the 'roids pretty well.
I did feel aggressive, and I lashed out more times than I can remember, mostly about stupid, non-important things. I was crabby, impatient, depressed, anxious, and tired. And a taste in my mouth that I'd imagine would come from... licking a tire-iron?
After my third early morning infusion, I got five hours of sleep in the middle of the day. It was glorious, and I will try to remember how I felt waking up, for as long as my brain will hold it. Indescribable!
Terence has been great through all of this, and I am so lucky. So very, very, very lucky. He did his best to keep me calm, to not take my insanity personally (that's a big one!), and helped me so much with everything. I was feeling so guilty for being sick when he had planned this beautiful vacation in Maine for us...but like a trooper, he adjusted the travel plans, we waited to see how I felt, and after that last infusion we were able to go. I was tired and a bit wiped, but we made it. It was absolutely beautiful.
I'm addressing wedding invitations. They look beautiful. I am so excited about getting married to Terence, because it just feels so right. (Haha, it's like the best idea I've ever had! Good thing he had that same idea!) About every 5-7 minutes I think about what a difference a week can make in a life. Without getting TOO philosophical, I am just glad things worked out the way that they did. I am glad I went on the hunt for another doctor, and found the lady I found, instead of waiting for Mass General guy to call back. He DID eventually, at which point I told him, I was already being treated for an exacerbation somewhere else.
The daily Copaxone injections seem like a breeze now, after IV infusions. So that's good. :-)
I'm back to cooking! In all honesty, I feel like the beginning of this health episode can be traced back to "when I ceased to bake and cook". I don't know exactly when that was, I just have a sense that it's been about 2-3 months of me not feeling quite right in one sense or another.
So today, I am celebrating. I am celebrating the recovery. I am celebrating Terence's new job, which he seems to enjoy so far. I am celebrating this amazing, rich, smooth, New York Cheesecake Ice Cream I just made this morning. All day I've marvelled at how much better it is than store bought ice cream. Gaby gave me the ice cream maker last Christmas, and it's so much fun. It's extra exciting to realize how much money one saves by making it at home. My repetoire is not huge yet - so far only Nutella Gelato, and this Cheesecake business. The great thing is that the quantity is a perfect little tupperware, so no reason I can't make 2-3 flavors a day.
Now I just need to get that herb garden going too - that's my new peeve. Fresh herbs at the store are super expensive, and you never end up using the whole pack before it goes bad. Time to get a-plantin'!!
So, it is with blissfully renewed energy I resume my teaching. I get on the darn exercise bike every day to try and get rid of the steroid weight that inflated me, before I have to fit into the wedding dress at the fitting. I am vowing to take things as they come, to take it easy. To do things that make me happy, and keep me calm. :-) Like dance lessons with my love. :-)