Category Archives: Visually Impaired

One big whiny post

Um… This week is starting out kind of rough. First of all, my monthly infusion is due, which means the last batch in my system is running out, which means I’m fatigued. I don’t know why it does this to me, because it certainly doesn’t flood me with energy when I get the infusion, but there’s no denying it. And knowing it’s coming doesn’t make it any easier. It still sucks, every time. It’s disruptive and discouraging and a constant reminder that yes, I am still disabled. The fatigue is debilitating, and there’s not much I can do to fight it. This angers me.

Also, I’ve been feeling lately, and especially yesterday, that my vision has grown worse. It’s so subtle that it’s hard to say for sure, but yesterday I was absolutely sure that the fog in my field of vision has closed in a bit more. This angers me too, and scares the effing poop out of me. I fear losing all my vision, I fear not being able to see my family’s smiling faces or the sun rising in the morning. There are so many beautiful things to see in this world and I don’t want to miss out on seeing any of them. 

So we are working on getting in to see my Neuro Ophthalmologist, and in the meantime I am trying ro enjoy what I still have and holding fast to my faith in Christ. He brought me through my darkest times and I don’t expect him to leave anytime soon.

The problem with all this, of course, is that life around here doesn’t stop to cater to my issues. The people still need to eat, laundry still needs to be washed, and the dog still needs oodles of attention. Last night my daughter spent the evening puking her guts out, and I was happy to clean up after her. Because I’ve got a tough gut and I can’t see the puke anyway. They point to where it lands, I take care of it. Cuz I’m still the mom, after all. And I’m thankful to still be able to be here for my kids, even with MS.

Some days (nay, weeks) I just don’t have the energy to be cheery in spite of the mess. This is one of those weeks. And it’s only Tuesday! Pray for my survival, would you please?

I chaperoned, sort of

Is chaperoned even a word? It sounds weird. Well, either way, it’s what I did today. I went along on a field trip for my son. I passed out papers to kids, I supervised and walked them around a museum. It was a lot of fun overall, but also extremely challenging for me. From the get-go I was out of my comfort zone because I rode the school bus with a gang of fourth graders. Buses are loud, fourth graders are loud, it’s all loud. And since my cochlear implants can only process a handful of noises at any given moment, it was all just a bunch of gobbled-gook to my brain. But the bus ride was really the easy part.

Once we arrived at the museum, I was in a little more shock. It’s just hard walking around unfamiliar places, and even harder when you are with a bunch of people unfamiliar to your specific needs. I mean, on the outside I look completely normal. Well, except for the cochlear implants, but I think most people assume that since I have them, I have no trouble hearing the way they do. I had not tried to explain to any of the adults that I could only see clearly within a small field of vision eight or ten feet ahead of me, or that in loud situations I need to be standing near the speaker, within lip-reading distance. So when the person in charge is talking to the group, I have no idea what they are saying. When they say something funny and everyone is laughing, I stand there feeling rather idiotic. I mean, I never know if what’s being said is important for me to know or not. They could just be giving a history lesson, or they could be giving instructions for where to go and when. If it’s the latter, I would kind of need to know, since I was being put in charge of a small group of children. In hindsight I guess I should have done a better job educating the teacher. But, all anxieties aside, I managed and we all had a good time. Luke and another student both helped me to know what was going on, so there wasn’t much problem there. Also, we were given thorough hand-outs detailing the schedule and location of each segment throughout the day.

So I guess you could say the day was bittersweet. On one hand it was fun, and really awesome that I was able to be there to support my son and his class – he had begged me to chaperone – and on the other hand it was bittersweet. I felt a lot more impaired than I usually do. It was a big stretch out of my comfort zone and away from my physical capabilities. But I think Luke understands that, as he is an empathic kid, and he appreciates that I had the courage to do it. He knows I only do it because I love him.

No excuses left

I went to that MS lunch program yesterday and had a wonderful time talking with others about staying healthy and coping with every day MS symptoms like fatigue and poor balance. Just as I suspected, it was refreshing to chat with others in similar situations to mine. No need to explain much; there was a strong sense of mutual understanding. I’m so glad I went and I am already planning to be at the next one.

But let me tell you, the most fantastic thing I learned yesterday had nothing to do with the program. I was chatting with another lady while we were both waiting for our rides, and I learned that our public transit system offers another sort of ride, similar to the Spec-Tran. I have been using the Spec-Tran for I think two years now (I can’t believe it’s been that long), and while it’s a wonderful service, it does get a little expensive. Especially when I am looking at using them to get me to the YMCA to exercise 2 or 3 times per week. It’s $2.50 each way, so every day I go to the Y, it’s $5. Which is kind of the opposite of motivational. So I’m paying for the Y membership, and $5 a day on top of that, and that really adds up. It’s almost as painful as paying for the dentist. Almost.

But this other service, the Redi-Ride, will come to my house, same as Spec-Tran, and will take me anywhere in my township – including the YMCA – for $0.60 per ride. Sixty cents, people! AND, they only need 4 hours notice, as opposed to the 24 hours Spec-Tran requires. I am beyond giddy about this. That may seem silly, to be giddy, but this is a big deal in my world. MS stripped me of my independence three years ago by taking my vision, but by golly I am getting a lot of it back (the independence, not the vision). The Spec-Tran service plays a big part in that, but this Redi-Ride will do the same, and with a lot less pain (financially speaking, of course).

So that is my excitement for the week. I’m very excited about this Y membership, because I believe it will remove any excuses I may have about running, and now with the Redi-Ride I can’t even complain that it’s too expensive to get there. No matter the weather, I can still keep moving. Is my knee giving me trouble? Use the elliptical. Hip acting up? Swim in the pool. Feeling lonely? Join a class! Yes, this was a good decision. I’m making an investment in my health. This body I’m working with is flawed. MS is a serious setback, but by getting stronger and staying healthy, I am fighting back. I want the odds to be in MY favor, not the disease’s.

I signed up for another 5k race, and it’s less than a month away. I hadn’t been sure if I would be ready for it, but now I feel like there’s a good chance I will be. One day at a time, right?

The Social Security Office

I had to visit the Social Security office today. Here’s the long version (because that’s the only way, really):

I’ve been receiving Social Security Disability Income for a full two years now. After you’ve received benefits for two years, they automatically enroll you in Medicare. I have health insurance through my husband’s employer, so I wasn’t real interested in Medicare, but if it’s free, I guess I can’t complain. What I learned, however, is that Medicare comes in different forms, and the two I was enrolled in were Part A (hospital insurance) and Part B (medical insurance). Now Part A is free, but Part B is not.

Now Part B could be advantageous, if it covered what my current health insurance doesn’t, and saved me more than I would be paying for the premium. But I never looked into it, because I learned that my participation in Part B would deem me ineligible for another program I’m part of. I currently receive assistance paying for my monthly Tysabri infusions (for MS, $20,000 before insurance PER infusion), and if I didn’t receive that assistance I would be stuck with about a $5,000 deductible. (I did warn you this was the long version.)

So basically, I could pay $120 per month for Part B Medicare and possibly $0 deductibles OR I could pay $0 premium and definitely $0 deductible. Now I was a straight A student, and I went to college. I chose the latter.

Simple, right? Not so. In March, when they sent me my Medicare welcome packet, I returned the card stating I was opting out of Part B. Then June came, and with it a welcome letter – and a statement of my insurance premium for PART B. I called to say W-T-F and they told me that was just a standard letter and that I would receive another one telling me it had been cancelled. Another month went by and my benefits came, less the $120 for Part B premium. I was not so happy, and I called again. They acted like they knew nothing about my opting out, and told me I needed to sign a form requesting cancellation, and that they would mail it to me.

At this point I didn’t believe a word they said, but I gave it a week to see if the form showed up. It did not. I called once again, but this time made the call to the local office, in case I needed to make an appointment. They said an appointment was not needed, but that I should come down and they would get it all straightened out. They made it sound so easy but I was still doubtful. I made arrangements (thanks Grandpa!) to get to the office today and guess what? It really was easy. The hardest part, literally, was signing myself in at the kiosk to get in line, when they asked me this question:

Are you….
1) Blind/low vision
2) Deaf/hard of hearing
3) (to be honest, I really don’t remember what was after those first two, but I was looking for an “all of the above” option)

I waited for about an hour, which is what they warned me it would be, and when they called my number I had to ask a few of the people waiting where #10 was, but they were all happy to direct the obvious newbie to her station, and I found it just fine. The gentleman was exactly that, a gentleman, and immediately put me at ease. He reassured me that cancelling was a simple process, and showed me where to sign, and before I even had a chance to ask, he was telling me they would be refunding me the two months of premium I had already paid, and the check will be on its way within the week!

I was so pleasantly surprised at how smoothly it went and I felt pretty silly for having been such a nervous wreck. No worries though, it’s done now and I can move on with the rest of my week. Is it really only Monday still?

 

 

Maybe I should buy a trike bike instead

I went on a bike ride with my daughter today. I don’t know why I try, really. It almost wears me out more than running. Almost. And it’s not the riding part that’s so hard. It’s the stopping and going. No wait, it’s just the going. Stopping is easy. Getting going again requires balance, which a normal, healthy human would probably not think twice about. But for me, the MS girl, it’s kind of problematic. I just don’t have the balance required to get it done without looking like a complete goofball. It’s fine when I catch myself, and better yet when I actually get moving again, but when I don’t? This kind of thing happens (I know it’s a little gory, and I apologize, sort of):

Ouchy-wah-wah is what we like to say around here. Yikes. And is it crazy that I didn’t realize the damage until AFTER we finished our shopping trip? I mean, a half hour later and a mile more of riding happened and I was completely oblivious to the bleeding. I had inspected the scrape right after it happened, but I guess I missed that upper part. I blame my right eye, it’s useless.

Of course now we are home and resting, and I cleaned up the wound and it hurts like the dickens. I’m pretty sure it was getting infected. Eeewww.

I might wait until I’ve built up my core strength a bit more before attempting another ride. Gotta stay safe!

Sensory overload

A Trip to the Store; Sensory Overload – MultipleSclerosis.net
https://multiplesclerosis.net/living-with-ms/a-trip-to-the-store-sensory-overload/

“I have to walk down the aisle like I am balancing on a tightrope in a circus, look for what I need like I am looking for an abnormal tissue cell under a microscope”

Yes! This is so so ME! And meanwhile there are people waiting to get by or to get to where I’m standing and they don’t know why I’m taking so long and I feel pressured which makes the focusing even more impossible. This is also why I let people cut in line sometimes. At fast good restaurants, for example, while I’m straining to read the menu. I just don’t like making people wait on me.

I am still working on adjusting and adapting to vision loss. I’ll get there, eventually.

Little-big victories

I went for my six-month follow-up with my neuro-ophthalmologist today (that was a lot of hyphenating lol). After reviewing the results of my Humphrey visual field test (flunked with flying colors, you could say), the standard “look straight into this bright light while I breathe loudly near your face” test, and chatting with me for a few minutes, he was ecstatic. Like, over the moon happy to see how well I was doing. He said my right eye had definitely improved. A small improvement, but it’s an improvement nonetheless. That’s the right direction to go, you know? He was very happy to hear that I was running, and feeling good. Maybe he could even sense from the way I was speaking to him that my cognition has improved? I’m definitely more “with it” than I was when I first came to his office in 2013. He even commented that my hearing was improving, even though that isn’t possible post cochlear surgery, but I took that to mean he could tell I was comprehending speech better than before. So yay!

When he walked me out to the receptionist’s office after our visit he stood there, looking at me and said, “Now, you promise to give that husband of yours a hug from me, won’t you? You promise??” (He loves Mike, keeps telling me he’s a good man, which of course I know, but it’s still nice to hear) And I said, yes of course, but I want a hug too. So I gave him a great big hug. Then he looked at me again with this stupidly proud, fatherly-type grin on his face, nodded a few times, sighed loudly, and then turned and walked away. It was the strangest interaction I’ve ever had with medical personnel, but it was beautiful. While I don’t feel a whole lot different than when I saw him six months ago, he sees progress, and that’s good news. Lord knows I’ve had my share of bad news, and I’m always down for some good stuff.

Oh, and to top all this off, the dog didn’t destroy the house while I was gone! I’ve been leaving her out of the crate while I’m gone, for an hour or two at a time. This was the longest I left her out, but she did great! Didn’t chew anything up, didn’t relieve herself in the house, and she seems even more super duper happy when I come home. Now if we can just get her to stop barking at all the neighbors walking by…

Tax Preparation

We have received all the tax documents we need (I believe), I am armed with my new typoscope (recommended for those with low vision), extra large magnifier (a gift from my big brother), and my reading lamp (a gift from my father-in-law). Tomorrow, in the light of day, I’ll be attempting to prepare our tax returns. All by myself, and I am Geeked. Yes, that’s Geeked with a capital G. You have no idea how much I miss this.
See, I don’t mention it much here on the blog, but I’m an accountant. Not a CPA, but I was working on that. My college degree is in accounting (though I don’t get much use out of it these days), and I was an IRS Enrolled Agent at the time I went on disability. Key word there is WAS. My enrollment eventually expired since I stopped working in the field. Former clients will occasionally ask me around this time of year if I’m preparing tax returns again, or if I plan to down the road. I don’t know. I would really love to. But I barely trust myself to do my own, so I can’t very well ask others to put their trust in me.
But we’ll see how this week goes with these new visual tools I’ve been given. I have no doubt they will help to relieve some of the strain on my eyes, but the accuracy of my data input remains to be seen. Of course I’ll have my husband or a friend double-check the numbers for me. Crossing my fingers that I get the numbers right, AND that we don’t owe this year!!

Why the crockpot is my new best friend

This is not to diminish the value of my friendships with real people, because I have a lot of pretty amazing friends, but by golly, I am really loving my crockpot this year (I’ve had it a whopping 16). The internet holds a wealth of information and ideas for what you can make in these things, and I’m finding plenty of healthy, tasty meals.

But here’s why I’m really learning to love the crockpot – it allows me to work around my fatigue and still manage to feed my family. The fatigue that MS causes has really been kicking my butt hard this past month, and by 1 pm (even after a morning nap) I’m pretty slogged (not sure if that’s a word but it sounded good). By 4 or 5 pm, after getting the kids from the bus stop and handling the flurry of that excitement, I’m close to non-functioning. Which makes dinner prep rather difficult.

Case in point: It is almost 7 pm. We ate dinner already (tacos!!) but I’m feeling the munchies so I went into the kitchen to get a bowl of cereal (granola, actually). I pulled the granola from the cupboard, the milk from the fridge, and set both on the counter. I then got a bowl and poured the granola into it, and proceeded to put both the granola back in the cupboard and the milk back in the fridge.  Notice anything missing?? I walked all the way back to my bowl of granola, ready to eat, and discovered I had forgotten to pour the milk.

It’s really frustrating, feeling so… I don’t know, lacking in ability to perform simple tasks, I guess, and pretty damn powerless to change it. But I’ve been faced with lots of things, big things, that I cannot change. If I have learned anything from these big, unchangeable things, it’s that I do still have a choice. And that choice is to accept it, adapt, and move on.

The crockpot means I can prepare a delicious, healthy meal for my family early in the day, before I get fatigued. I refuse to give up and feed them frozen pizza every night. So, for what it represents and for what it allows me to do, the crockpot is my friend. The thing is old enough to drive now (a wedding gift), but I suppose using it for a ride to the store would be asking too much. We’ll just stick to food preparation for now 😉

Painting

Oh my goodness. This past weekend was a whirlwind. Lots of fun activities going on. I can’t quite process it all. In fact, it has sort of left me in a State of Funk. (Also, I just finished reading The Giver, so I’m tempted to capitalize the Common Words. My apologies. Do you accept my apology, Giver Fans?)

Anyhoo, Saturday we went to Luke’s soccer game, and Grandpa took us out for lunch after. Natalie was wanting to do something special with me, so we went to this local “paint your own pottery” place called Playing Picasso. We had so much fun! Natalie was ecstatic, and had so much fun that she has decided she would like to have her 7th birthday party there (because her 6th is already planned). Of course she only gets one birthday per year, so she has the next three all planned out. This year is laser tag, next year pottery painting, and the year after that roller skating. Well, at least we have time to plan lol. Anyway, I really liked this place, and I’m already thinking I would like to come back on my own and paint some stuff. Maybe I’ll  even throw myself a party one of these times.

On a normal day, the pottery painting was A LOT of art for this girl here, but I didn’t stop there. No sirree, I had plans to go to Painting With a Twist with a friend that evening. This was a completely new experience for me, but I had heard from other people that it’s a lot of fun. They get 20 or so people set up at tables, with brushes and paint, and then an instructor guides everyone through painting a masterpiece. After 2 hours, you have 20 matching paintings (in theory) and they take a group photo while everyone stands proudly holding their finished paintings.

I was a little hesitant to do this, knowing I would have trouble seeing and hearing the instructor, but we had them place us right up front. This way we had a better chance at reading lips, and could readily ask questions as needed. I ended up asking a lot of questions, mostly relating to which color was which on my palette. My vision is bad, but not in the way most would think. I have a much smaller field of vision, but within that field I am able to see 20/20 with my left eye (20/40 with the right). Colors on the other hand, are hard to distinguish. So most of my questions were relating to the colors: which one is blue? Is this one green? Can you show me where I just painted the white circle? White on white is impossible for me to see, and that happened to be the first thing we did. Oh, I could have freaked out right there, but I decided not to. I was determined to have fun, no matter what, and that is exactly what I did. Even when I lost my balance trying to reach the top of my canvas and almost knocked over the entire effing table. Yes, I lost it. Fell right over onto the table. But I quickly recovered, exclaimed “oops, I forgot I have poor balance”, laughed at myself, and moved on.

At the end of the day, I went home with some fun memories and a painting that turned out to look pretty darn cool!

Painting With A Twist
Painting With A Twist

It may not seem like a big deal for most, but it was to me. I am still, two years later, adjusting to life with hearing and vision loss. I am almost daily faced with tasks that are new to me. New to the NEW Me, not the Old Me. And that can sometimes be a smidge frightening, but I am also daily making the decision to ignore that fear and just keep moving forward. Because today is a gift, and I refuse to waste it being afraid. Do you hear that? Life is a gift! Open that bad boy up!!