Category Archives: Disability

I don’t mind a little cheese

**Warning: this post contains a lot of cheese.**

image

My husband was up all night putting this cabinet together for me. I had not even asked him to, but he did it anyway. Because he loves me.

And while the cabinet doesn’t match the hutch next to it, I love it. I love both pieces, because this space is mine, and mine only. This is where I work. Where I write, where I feel like I can function in a way that is not hindered by my disabilities.

I must also mention that my husband sort of hates The Hutch. But knowing how much I love The Hutch, he lets that go. The Hutch stays, and we never speak of it.

So now, at the risk of sounding overly sentimental, these two pieces of furniture represent the sacrifices my dear husband has made for me. Which honestly is still not even accurate, when you take everything into account. We have been married for 16 years, but especially in these past two he has given up so much for me. And if you ask him, he would tell you he would do it again, in a heartbeat. This furniture will always remind me of his love and sacrifice, and with any luck will inspire the same qualities in me.

Mike, I could not live without you, nor would I want to. You are truly my everything. Thank you. I love you more than I can express in words.

Memory Fail(s)

Funny story (to me, anyway): This morning started out just like the previous few; ease out of bed, pack lunches for the kids, wish them well as they leave with Dad to go to zoo camp… Then I watered the flowers, made some coffee, and sat down on the couch to relax and do some reading. Forty-five minutes later I hear a honk, and the dog started barking. Perplexed, I got up to see what was going on. There was a white Spec-Tran van in my driveway. To pick me up. For the hair appointment I made just two days ago.

Oh, I was frantic. They don’t have to honk, and they certainly don’t have to wait for you to get dressed because you completely forgot they were coming. So I opened the front door, waved to let the driver know I was aware and coming, and rushed back to the bedroom to put on a bra (because I was still in my pajamas). The whole time – a matter of seconds that felt like eternity – I was praying the driver would not leave me. I hurried to put Piper in her crate, slipped on some shoes, grabbed my wallet and purse with a last minute check for my keys, and headed out the door. The sense of relief as I rode in that van was extremely gratifying.

Then as we were nearing our destination, the driver asks me if the address is 4020 (they often do this, which frustrates the crap out of me because they have GPS and I’m deaf, and it’s just hard and usually extremely unnecessary) and I say yes, that I believe it was next to a Quality Dairy, but I wasn’t sure because I’ve only been there once before. But then he pulls in to the salon’s parking lot and it’s there, right where it always has been, and the nearest Quality Dairy is at least 3 blocks away. Another memory fail. But here’s my note to Spec-Tran: don’t take navigation advice from the unlicensed deaf/blind girl. Her memory is like a sieve.

Minor mishaps, really. I was there with plenty of time to spare. I got a real haircut, and afterwards was able to chat with the stylist about cochlear implants. She had seen a video on Facebook showing several people, of all ages, reacting as their implants were activated. She was fascinated by the miracle of it, even though she knows she can’t come close to knowing what it’s like. She showed me the video, smiling the whole time, and her eyes just sparkled as she watched; she seemed to really “get it”. So it was just a good moment, to share in the awe of the CI miracle with a hearing stranger. It really is a miracle.

And then I called Spec-Tran (yes! with my cell phone!) to get picked up (we were done much earlier than I expected). When I got home I changed out of my pajamas (lol), let Piper out of her crate, and poured that cup of coffee that had been waiting for me. It’s good to be alive.

I did not chuck it all

In reference to my previous post, I did not throw in the towel. I did not chuck it all and join the circus. Heck, I didn’t even stay home and get drunk. Turns out some good, quality sleep is all it took to snap me back to reality. Today I gladly accepted my responsibilities. I went to sleep by 11 pm, was up at 7 am with the kids, and only took an hour long nap during the day (which is not usually sufficient, but this time it was!). I got a lot accomplished on the homefront: sweeping, mopping, cleaning toilets, folding laundry. I even fed myself a decent lunch of fried eggs and toast, though I’m pretty sure I got egg yolk all over myself in the process of eating it. I fry my eggs over easy, and I can’t see colors well due to my vision loss. So, runny yolks folded up in my toast got messy. And I only know this because I felt it dripping. All. Over.

Anyhoo, I have been mixing my regular coffee grounds with decaf. I don’t want to go completely caffeine-free, but I do want to be able to drink more coffee and not have the crummy side effects. Caffeine is a diuretic, and we people with MS  have bladder issues as it is (97% I think I remember reading). So caffeine doesn’t help. Gradually switching to decaf – which is not entirely free of caffeine – seems to be a good alternative. This way I can have my coffee and drink it too. So far it has been a painless process, and I’m already noticing improvements, like the better quality sleep. I’m glad for the change. We’ll have to wait and see if it sticks.

Pastor gave a really good sermon (as usual) last Sunday, and I want to  write about it this week. Tomorrow’s looking good for that. For now it’s time to wind down and hit the hay!

Spec-Tran = FAIL

Hold on, here comes a rant…

I had an appointment with my neuro-ophthalmologist scheduled for today at 1:00. My Spec-Tran ride was scheduled to pick me up at 12:23. I was ready and waiting at the door by 12:15. By 12:29 I was getting antsy. It takes a good 20 minutes to get to where I need to be, and then I have to walk a ways, take the elevator, walk some more, which all takes me another good 5-10 minutes. So, you know, I was kind of freaking out. I called the Spec-Tran office to find out what was up. They said, “don’t worry, they are just running a few minutes late”. Since they were already 6 minutes late by the time I called, I figured they would show up at any second. They didn’t.

So I called again, and spent quite a bit of time on hold while the dispatcher figured out what was going on. After a good, long wait she was able to tell me that the driver indicated he waited in the driveway for 2 minutes, and then left. She admitted this was clearly an issue because they are supposed to wait longer when picking up riders. That’s nice, but the real problem is that I had been staring at my driveway since well before my scheduled pick up time, and there were absolutely NO VEHICLES near it. So clearly, the driver was at the wrong house (this has always been an issue; there is a house down the street with the same number, but it’s technically on a different street. Technically.) The dispatcher said she would find another driver to pick me up, and by the time she was able to find one (who could pick me up at 1:30), it was 1:01. I told her that’s nice, but could she call my doctor’s office and let them know what’s going on, to see if they can even see me that late? Because I knew they couldn’t. I just wanted her to be the one to apologize for their mistake. Also, you know, I’m DEAF, so this phone call business is quite challenging and I’m on the verge of a meltdown.

It was not a good day for wearing mascara.

Frustrated and angry, I composed an email to my husband to let him know what was going on. I knew he would be texting soon to ask how the appointment went. I cleaned up my face so I wouldn’t scare the dog, and then got on the phone to call and reschedule my appointment. While I was on hold, my husband walked in the door with news that he had already rescheduled for me. He felt so bad about what happened, and was apologizing even though it was entirely out of his control.

I know he grows weary at times of driving all of us around, so I had hoped that this transportation service would relieve some stress for him. Today’s mishap definitely shot a few holes in that theory, but I’ll keep using it and hopefully over time we’ll get all the kinks worked out. Just like any adjustment, it takes time and patience.  Thankfully, those are two things I have plenty of.

 

Planning ahead

This Spec-Tran paratransit service has been a huge blessing after just a few days. I had a doctor’s appointment on Monday, which resulted in another appointment for today, and another one in a few weeks. Also, I have two doctor’s appointments next week. And none of this has required my husband to take time off of work. Hurray!

I’m learning quickly how it all works. All of the scheduling, confirming, and canceling of rides can be done online. Also, I’ve already emailed questions to customer service and was very pleased to have prompt responses.

Today I learned an important lesson: use the restroom before you are picked up. It’s not such an issue when they pick me up from my house, because so far I have been the only rider on those trips. It’s the rides going home that are more unpredictable. Especially if you are being picked up near the hospital, which is surrounded by medical offices. When the van arrives, it could be holding up to 4 more passengers, all of which may be getting dropped off at their homes before you. So you really have no idea how long you’ll be in the van once you’re picked up.

Today was a problem because my office visit/procedure required me to fill my bladder to the rim. And while I tried to empty it completely before my ride came to get me, I also made the poor choice of purchasing a large coffee at the cafeteria of the building I was in. I thought to myself as I was waiting for my ride, “Maybe I should go again, just to be on the safe side”. But then I was afraid I would miss my ride, so I ignored that wise thought. But then it turned out that my ride was running 15 minutes late. So by the time it came I was pretty ready to go, but thought I could hold it.

I was wrong. Very quickly, I began to be in some serious pain. After some bumps and turns and one more stop, we dropped off one woman at her house, and before the driver could close the door to the van, I looked at her with pleading eyes and whispered loudly, “I desperately need to use a restroom!” And she said, “No problem, we’re headed back to the hospital now”. Relieved (well, almost), I held it until the next stop. Which was not actually the hospital, but across the street, at the building I was just picked up from. Because she was dropping another woman off. I find this rather ridiculous, but I’m not complaining because I made it to the restroom without soiling myself, and I didn’t feel like I was inconveniencing anyone. Too much.

Altogether, the total travel time was around 45 minutes and only cost me $2.50. Not too shabby. Piper sure was happy to see me, as she also had a desperate need to relieve herself! 😉

A glimpse at regaining independence

I received approval today to use the paratransit service, and I am beyond excited. The service provides people like myself with rides to pretty much anywhere in the city. All I have to do is schedule the pickup within 24 hours, pay the fare, and off I go! I can apparently schedule online, which I tried already for two of my upcoming appointments, and I’ll probably call tomorrow to confirm that I did it right.

image

No more pulling my husband out of work for doctor’s appointments, dragging him and the kids out at dinner time for my support group meetings, and who knows what else? I can go on shopping trips, get groceries on my own (up to 8 plastic bags), even take the kids to the library or the museum on days off! Just dreaming of the possibilities is more excitement than I have had in a long time.

Be thankful for the independence you have, because it can be taken in a heartbeat. My optic nerves were damaged as they are in a matter of weeks. I used to enjoy taking trips, sometimes just driving for the fun of it. The second to last time I remember driving (and enjoying it) was when I went to the abbey for a weekend getaway with my sister in august 2013. Even then I should not have been driving. A week later I drove my kids to their first day of school, with one eye closed to reduce the cloud in my left eye’s  field of vision, scared out of my mind and feeling reckless and over the top stupid for putting my children’s lives at risk. And that was my last time driving.

So there goes my Nascar dream. Is there a competitive arena for bumper?

Okay I got off track, didn’t I? Here’s the lesson: be thankful for your independence, whatever form of it you have. It is a gift.

Three units short

I went to see the hematologist today.  He seemed pretty confident that my anemia is a result of many years of horrifically heavy periods. I’ll spare you the details,  but will say they must be cause for concern if they have led to permanent loss of red blood cells.  As I was educated today,  those are the ones you need for energy,  and I happen to be three units short.  A healthy person should have at least twelve,  and seven is real bad.  I have 8.7.

Of course,  I have been taking iron pills for a couple weeks now, so it’s possible that number has come up.  They took more blood today to see.  When I told the doctor I was taking the iron pills with my meals because they upset my stomach, he didn’t seem very optimistic.  He said it’s best to take them on an empty stomach so the body absorbs them before they are digested. I’m not real crazy about that,  but if that’s what it takes then I guess that’s what I’ll do.  Worst case scenario, I’ll have to get the iron via infusion, but I’m a regular at the infusion center so that doesn’t bother me.

I should hear back from the doctor with the test results and his recommendation for treatment within the next day or so. Beyond that,  I’ll see the hematologist next month for follow-up and more blood work. He wants me to see my gynecologist as well to see if we can get those monster periods under control. (Mom, don’t say hysterectomy.  I know it’s a possibility.)

I was remarking to Mike while we were waiting that I don’t think I would know what to do with myself if I were healthy.  It’s just become such a normal thing for me,  to be dealing with health issues. But – with God’s strength I am still here, still living, still thriving, and still finding joy in the simple things. Still Mindy.