Category Archives: Disability

Hot Mess

85 degree summer heat.

Baseball tournament.

M.S.

Tingly hands debut.

Nerve pain.

Broken A/C freak out.

Sunburn won’t let me cool down.

Feeling helpless.

How does this not bother everyone else the way it does me?

What is wrong with me?

Oh yeah…. M.S.

Crying in the shower, snot running down the drain.

A good night’s sleep tried to help.

Literally dragged my foot to the bathroom the next morning (I did say “tried”).

I sat and waited in the physical therapy office for a half hour before checking in with the receptionist to see what the hold-up was. She was quite obviously unaware of the time of day, and had forgotten to let the therapist know I had arrived. It goes on from there, my bad luck, but I’m tired of hashing it out, those dumb details, so I’ll attempt brevity. I missed my ride, they tried to get me a new one, but I took a ride from a friend instead. Because I didn’t want to risk unleashing my emotions on a complete stranger. I came really close to doing that already at the therapist’s office, after discovering I had missed my originally scheduled ride. My husband reassured me that this was just a minor bump in the road, which I should have already known of course, but he knew I needed to hear it (He still amazes me, coming up with the right thing to say).

This was not my typical Monday. I don’t usually have to be anywhere, or talk to anyone but my family. So it was hard to do in the wake of a rough-on-me weekend. I just didn’t have the tools necessary to cope with minor hiccups like delayed appointments and missed rides. I spouted my frustration on Facebook and received lots of encouragement in return, but I felt a little shameful doing it. Because I like to be the positive one. I guess today I just decided it wasn’t worth the effort. Because it was going to take a lot of effort.

But those positive words helped, and the ride from a friend, and then a good nap in my own bed (with working air conditioning!). The kids were with grandpa for most of the day so my only interruption was the dog barking at who knows what. It was nice. And then I grabbed a beer, turned on some Led Zeppelin, and started chopping vegetables for dinner. I managed to relax. Truly relax.

I have more doctors to see this week and then I start some physical therapy next week. I’d bore you with the physical therapy details if I could remember them. So you’re in luck, cuz I have a terrible memory.

Peace out, readers. I hope you take some time this week to relax. Really, truly relax. It can only do you good.

 

Surviving, and then some

Today I did better than simply surviving, and that felt good. Exceedingly good.

Depression is still an issue. I’m addressing it, one baby step at a time. Talking helps, and I have amazing family and friends who make that task not feel so impossible to do. Baking also helps. I love to bake. Cooking seems to help too, though I can’t say I love it the way I love baking. Still, it’s something. At least with the baking and cooking there’s always something to show for it. And something to share with others.

Though culinary therapy may work for now, I’m not sure if it will be sufficient. I am feeling a lot of ugly emotions, and I know it’s a part of the grief process. I’m feeling some anger and frustration and homesickness. Not much in my life is familiar anymore. Everything looks and sounds different than it used to, and that’s difficult. It’s been three and a half years since I lost my hearing and vision, and I feel homesick nearly all the time. I long to feel at home in my own skin. Someday it will come, I believe.

I don’t know why I’m feeling such strong emotions after all this time, but I suspect they’ve been there all along, waiting for things to settle down before rising to the surface for me to deal with. So I guess I’ve just reached a part of the grief process I’m not familiar with, and may need some professional help to work through it. We’ll see. For now, talking helps. And cookies. There’s always cookies.

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?

Matilda’s Gone

Funny story – Back when I was working I set up a dummy account with my actual email for testing a new web portal. That was over three years ago. Just this evening I received an email from the company urging me to engage them to have my tax returns prepared, only it was addressed to my alter ego… Matilda Redmond.
First it gave me a chuckle, and then it brought back some memories I had left in the past, where they belong. The job I had when I lost my hearing was a really stressful job. I’ll admit now that I hated it. I missed my coworkers when I was forced to go on disability, but I didn’t miss the stress of the job. I had nightmares for almost a year following my departure. However, with the passage of time and the progress of my recovery, I no longer have those nightmares. And I do sometimes miss aspects of the work I was doing – the accounting portion – and wonder if some day I’ll be able to do any of it again.
For now I’m content balancing our checkbook on an insanely regular basis, and managing our family budget. Also, after receiving that email addressed to Matilda, here’s to hoping the nightmares don’t start up again tonight!

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?