Category Archives: Multiple Sclerosis

Not worth all the cheese in the world

So I’ve mentioned before that I gave up meat, dairy, and eggs for health reasons. I’ve been taking note of my disappearing MS symptoms ever since giving up dairy in June. It’s seriously amazing to me how much better I feel. No fatigue, no nerve pain in my feet, no premenstrual headaches. Two of my favorite foods in the world were always coffee with half and half and pizza. So it’s been a sacrifice, for sure. But so worth it, for how good I’ve been feeling. Then earlier this week I gave into temptation, two days in a row. I ate pizza one night, and the next night a chicken & broccoli casserole with cheese. Both were delicious, I’ll admit. I was hopeful that it wasn’t enough food to have any effect on my symptoms. But then two days ago I had a hint of the nerve pain in my foot. It lasted all of five minutes and went away, so I figured that was the end of it. Not too bad, I thought, I can handle this!

Of course, I spoke too soon. Yesterday The Headache arrived. It crept in around 2 pm and by 3 it was in full force. Y’all I am the biggest baby when it comes to headaches. I have no tolerance for them. At. All. It seriously ruined my entire afternoon and while I knew it wouldn’t last and with a couple Aleve it could be taken care of, the whole time I was thinking, that food was not worth it. Not even close. So back to the vegan diet I go. It’s difficult at times, yes, and I kind of feel like a pain in the rear at family functions or other group gatherings, but I’ve gotta keep sticking with it for my health.

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Accident-prone

My husband says I get hurt more often than anyone he knows. I’m not sure if that’s true, but I certainly get hurt more than at least my immediate family. Christmas morning I burned my fingers. I was taking a pan of bacon out of the oven when I knocked off the oven thermometer. So of course I let my instinct to move it with my bare hand take over, and that lasted all of a half second before I dropped everything where I stood and proceeded to spew fudge words under my breath as I ran to the freezer to find cold things. Burns are the most painful things ever, y’all. All dern day I had to keep my fingers on ice or they would start screaming at me. So basically I was relieved of most of my planned kitchen duties, other than putting away clean dishes with my one good hand. Thank goodness my mother-in-law was there to save the day.

Then today I went to the hospital to have my monthly Tysabri infusion. All went well with the infusion, but then as I was rushing down the stairs to be sure my ride didn’t leave without me, I miscalculated the number of steps and fell down the last one or two. I’m not sure, it all happened so fast, but I think it must have been the last two steps that I missed because I twisted my ankle real good and I fell hard. I dropped everything I was holding as I went down, of course, and just laid there, afraid to move. I was looking up to see if anyone would come to help me get up. Two people across the way just stood and stared, but then eventually I was surrounded by employees from the building. A nurse offered to have me stay and get the ankle checked out, and a valet driver brought me a wheelchair. Even my paratransit driver came inside looking for me, and was able to help me into the van. I really wish I had the whole thing on tape because I think it would give everyone a good laugh. Graceful I am not.

It’s now several hours later and I’m wondering if I should have taken that nurse up on her offer to stay and get the ankle checked out. I kept my leg elevated the whole drive home and then I’ve iced the ankle periodically throughout the day, but my it is still pretty swollen and I can’t bend it. Ah, I guess I’ll just give it a little more time and rest and hopefully it will heal up on its own.

Vertigo can go

I had a case of vertigo back in early June. That time it came on really quickly, and I went to the urgent care to get it checked out. They told me it was probably resulting from a recent head cold and sent me home with some meds for the dizziness.

I have not been sick since then, but the vertigo has reappeared. I can’t pinpoint exactly when it started, but I remember having it on Saturday and it hasn’t let up since. I have no clue what’s causing it, but I’ve read that it can be common for people with MS, so I’m not all that concerned. Annoyed, yes, but not concerned. I’m sure it will go away soon. I’m hoping. It better, because I have my entire extended families coming for Thanksgiving dinner, and I would like to be able to enjoy them without having to sit down the entire time. I’m seriously walking around like a drunk person, only without the benefit of being drunk. I have to laugh, so you can too. Just picture me hobbling down the stairs, clutching the walls as I go.

Ok, well, if you could think to pray for me I would be grateful. And I pray you all have a wonderful Thanksgiving, however you spend it. If anything, spend it thanking God for all you’ve been given. Peace out…

Here’s an honest post

Not that my posts are never honest, just that this one is taking me a little bit of extra courage to post. I’ve got my big girl pants on here, folks.

I went to see my doctor yesterday to talk about anxiety. It’s something I’ve been struggling with for some time now, well over a year, only I’m just now realizing that’s what IT is. So I’m getting help.  And in case there was any shred of doubt in my mind that this was a real problem for me, I got worked up and nervous on the way to the doctor’s, worrying that we wouldn’t get there in time (with 50 minutes still yet to spare), and then the doctor’s office made me wait for a good 30 minutes. So I sat there, appearing completely calm, while my insides itched and twitched and crawled around. My heart was racing, my chest was getting so tight it was hard to breathe. When I describe all this to my doctor, and to friends who are familiar with anxiety, they nod in reassurance that it is a real problem and I’m not crazy.

These little anxiety attacks happen more frequently than they ought to. Very often, too often, they cause me to lash out in anger at my children. They don’t deserve that (usually lol). Also it’s just mentally exhausting to be walking around in an amped up state of mind, with your insides all twitchy and restless. Honestly, it didn’t bother me quite as much when I was fatigued. I’m not saying I want to go back to the land of fatigue, of course not, I’m just saying the anxiety wasn’t as evident. I didn’t really see it for what it was because I was blaming it on the fatigue and I could always just sleep it off. But no more. Now I am healthy and I’ve got energy to feel the things I’m feeling that need to be addressed. And now I’m addressing them. Lord, don’t leave me now. I still need You every day.

I’ve thought a lot about where this anxiety is coming from. Who knows, really, but I wonder if this is the residual effects of my vision and hearing loss. Now that I’ve reconnected with people and I’m in better physical health, maybe this is part of that grief and rehabilitation process. I certainly don’t like to give my disabilities more credit than they deserve, but it’s true that I live outside of my comfort zone almost 90% of the time. Nothing looks right, nothing sounds right. It’s all still very foreign to me. I have to believe that this won’t always be true. I have to believe that I’m going to find my new comfort zone. And when I do, believe me, I will move right in. I’ll decorate it with paisley, Wonder Woman, and maybe a cowbell or two. And all my favorite people will be invited!

 

Adventures in low vision

I’ve been starting to wear my contact lenses again. They don’t have the glare protection I have with my glasses so I don’t see quite as well with them, but it’s a worthy trade off. With my contacts I feel much less inhibited, which is of great value when you have low vision and hearing impairment. That and it kind of allows me to tuck my hair behind my ears, which is a habit I regretfully had to give up when I got my cochlear implants. Between the earpieces and my eyeglasses, there was just no room for my hair.

I recently went back to the eye doctor to update my prescription so I could order more contacts and I asked them if it would be a problem to just wear one contact. My visual field index in my right eye is 27%. Meaning out of an entire area normal eyes can see, I am unable to see 73% of it with that eye. Which makes it kind of a useless eye, in my opinion, so I don’t feel justified in paying for a contact for that eye. The 27% I do see has clearer vision anyway, and can get away without corrective lenses.

I wear colored contacts that pretty well match my eye color, and that is just to prevent me from losing the contacts altogether. I have a hard enough time seeing things without contrast, so when I drop a clear contact, it’s nearly impossible to find.

All that to say, if you see me out and about and I’m not wearing eyeglasses, take a real close look and see if you can tell which eye has the contact in it. The ladies at the eye doctor assured me it was a pretty close match (although one of them thought it would be “cool” to have two different colored eyes), so I’m trusting they were being honest. Because I’m fairly colorblind and can’t tell for myself.

If anyone is really interested in this visual field index stuff and knows how to do the math, maybe you could tell me how much total vision I have with both eyes combined. Left eye sees 51%, right eye sees 27%, so with that means… what? That it’s a good thing they don’t let me drive anymore? That’s all I can say for sure!

I was gonna end the post there, but I just remembered a funny thing I did today, to give you a glimpse of life with me and my crummy eyes (my family is unnervingly unphased by it by now). Tonight I was making scrambled eggs for the family and I grabbed an almost empty carton from the fridge to add milk to the egg mixture. I knew as soon as I started pouring that I had grabbed the wrong carton. What I thought was the last of the milk was actually the last of the apple cider. Oy. I went with it though, cuz I didn’t figure it was going to hurt anyone, and I don’t think I poured enough to really alter the flavor. Crap like this seems to happen to me on a fairly regular basis, but I have to laugh or else I would cry. Life goes on, right?

Fighting like a girl

The nurse put my iv in my right hand, right above my super rad Wonder Woman bracelet my mom made for me, so I couldn’t resist taking a photo. Because when I think about fighting like a girl, I think about this constant fight for my health against MS, and so it just seemed appropriate.

Courage, bravery, stubborn determination. That’s how I fight this. How do you fight?

My food obsession

This is hilarious to me. I started this blog post with the above title 8 months ago. EIGHT. And the obsession is still here. What I thought would be a temporary thing has become the norm. So I’m obsessed with food. I love eating food, I love talking about food, and I’m even learning to enjoy preparing food. That last bit surprises me, because I’ve never enjoyed cooking. That was always my sister’s thing, and my dad’s thing. Not my thing.

However, when I gave up dairy and eggs back in June (in addition to the elimination of meat last November), I had two choices: 1) Be stuck with boring beans and potatoes, or 2) Learn to cook a few things. I was content with choice #1 for awhile, but after a month or two I was starting to get a little more adventurous. And by adventurous, we’re really just talking about things like using real garlic cloves and learning how to chop vegetables. So while I’m nowhere near entering any culinary contests, I’m certainly learning how to hold my own in the kitchen. I’m learning how to throw things together without a plan (gasp!) and I’ve been rewarded more times than not. Vegan food is delicious, people. Like ridiculous good. I’m still very hesitant to broadcast myself as a vegan (more on that below), but that’s basically where I am. And it’s one of the best decisions I’ve made for myself.

Since these were serious eliminations from my regular diet, I’ve been trying to keep track of how my body has reacted. The most notable changes happened after ditching the dairy and eggs. These were the hardest for me, psychologically, to say goodbye to, but the rewards make it all worth it and I’m not even tempted to go back. Since June, I have not had one monster premenstrual headache. I used to get these every single month, and I am a big baby when it comes to headaches. Seriously. Since June I have also not had one episode of nerve pain in my feet. Actually, that’s not true. I had a hinting of it while camping in August but I also cheated that week and had some desserts containing dairy. That nerve pain was something that was happening on a fairy regular basis, yet now it’s only a memory. Constipation? No longer an issue. Fatigue? What’s that again? It’s all gone. Fatigue. I think the fatigue has been the most notable challenge throughout my MS journey. In the 8 years since my diagnosis, it’s been the one constant in my list of symptoms. But it’s gone, just like that, and I am still amazed. So when I am asked if I will ever go back to eating dairy, the answer is a confident NO.

If I ever feel like I miss it – the food, not the symptoms – I can just have a bite of someone else’s food and wait for the effects to remind me why I gave it up. Every time I have been tempted and had a small portion of what I’m fixing for my family, I’ve been rewarded with a killer headache within a few hours of eating. It’s nuts.

Now the reason I hesitate to tell people I’m vegan is because there are enough mean vegans out there giving the good and kind vegans a bad name. And for a lot of them, veganism is right up there with religion and politics. So I worry that by stating the fact that I’m a vegan, that I will scare people away, or they will think I’m going to try to pressure them into joining the club. But I’ll tell you, I don’t really think I fit in any club here. I’m part of a lot of vegan discussion groups, to get food and recipe ideas, and I’ll tell you we don’t see eye to eye on everything. So while I’m not walking around wearing the t-shirts and drinking the Kool-aid, if I’m at a restaurant I will be sure to tell them I’m vegan to insure I don’t get served anything that’s on my no-no list. Which is a whole other post, y’all, cuz seriously it’s crazy that we can’t find a way to serve delicious food in this country, in this day and age, without smothering it in cheese.