Category Archives: Multiple Sclerosis

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!

 

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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.

It’s always good to be home

The kids and I went camping last week with my dad’s church family. It’s something the kids have been doing every summer for the past four or five years. This was my dad’s last year to be able to go, because he is retiring next June. So there was a lot of bittersweet floating around. However, I and the kids have been invited back for future years, since they have especially bonded with a lot of the kids there. We had a lot of fun. The kids swam, rode bikes, played gaga ball (??), went kayaking (my favorite part, may write a separate post about that), and played tug of war in the river. Lots of great memories.

My legs are in shambles. Good, old fashioned muscle pain from all the walking, I suppose. I walked constantly for the whole trip and I came back home to find I had gained 5 pounds. Seriously. I guess I forgot to mention there was a lot of eating as well!

I also woke up this morning with considerable nerve pain in my feet, which is unusual for the morning. It usually only comes around in the evening. I guess my body is just paying the toll for all the fun we had. I am more than okay with that. Just gonna keep moving forward anyway, with small breaks in between. No need to rush.

Speaking of waking up this morning… my husband woke me up to let me know that the refrigerator wasn’t working, and that he needed me to move the food to the fridge in the basement. He was on his way out the door to work but he is hoping to come back at some point to fix it. We’ll see. I’m just really grateful that we have a second fridge for these sorts of occasions. So that was my first task of the day, and I’m definitely going to take advantage of an empty fridge to get it all wiped out. There are lots of sticky spots and who knows what’s in those nooks and crannies.

The kids are happy to be home. The dog is happy we’re home. Hubby is really happy we’re home. Waking up on a Monday in our own beds is surely something to be thankful for, no matter what the day has in store for us. And coffee, of course.

 

I’m a crier…

I know, I know, I went a full month without blogging. Life just gets so busy in the summer, and I’m so busy trying to be “present” that I rarely get the time or mental energy to sit down and talk about what’s going on. And now that I do, I really don’t know where to start. So I’m just going to start with today.

Today I was scheduled to have my monthly Tysabri infusion for MS. I’ve been bringing my daughter with me to these infusions while school is out, and today was no different. Except that it was, because the infusion center had moved to a new building, and today was our first visit there. I was informed upon arrival – after being dropped off by the Spec-Tran – that I could not bring my daughter back with me, per a new policy. I immediately freaked, wondering what I was going to do. Do I let her sit alone in a waiting room for the three hours, do I cancel the appointment and call Spec-Tran to see if they could come back to get us, or do I text someone who may be able to help. I ended up texting a friend, and she was able to pick her up. But she had plans that i didn’t want to disrupt, so I eventually texted my father-in-law to arrange a transfer, and also to have him pick me up when I was done, and take us both home.

After my friend had picked up my daughter, I went back up to the infusion center to finish getting checked in. The nurse who took me back, Nell, asked me how I was doing today and, since she was a familiar face and had asked the question, I of course broke into tears. Because that’s what I do. When I’m happy, sad, scared, mad, whatever, I cry. And Nell, bless her heart, told me to just let it out. So I did. And then the heat started to leave my bones and I was able to breathe. They checked my blood pressure and it was normal, believe it or not.

All said and done, everything was fine. My daughter was fine. She was safe and with people I would trust with my life. I got my medicine – even got the IV in on the first try without much spazzing in my vein – and it was fine. A really effing frustrating day, but it was all fine. And the Tigers had a rain delay so I’m actually able to relax at home on my comfy couch with my chocolate peanut butter non-dairy ice cream and watch the Tigers play.

That’s all for now, but I do want to share all the other exciting stuff that’s been going on. Trips the kids and I have taken, foods I’ve been enjoying (and some not so much), the books I’m reading, movies I’ve been watching, stuff like that. And I will, I promise. Not today, but soon. Right now, ice cream and baseball.

In sickness and in health…

You know, I try really hard to be as healthy as I can. I can’t undo the damage MS has already done to my nerves, but I can do the best with what I’ve got left and the body I’ve got now. I stopped eating meat back in November. It’s gone well, so I gave up dairy last week. Right after I cheated a few days eating meat. And then I got sick with some nasty chest congestion. Ugh. The cheating was certainly not worth it.

Then today, I’m having coffee with a friend and BAM! I started having an attack of vertigo. It was so weird, y’all, I mean I have experienced dizziness but this was so much more. I mean, everything around me seemed to be literally turning. And it lasted for a good two minutes before it calmed down. The problem was that the feeling never really went entirely away, even long after my friend had left. I texted another friend to see if what I was experiencing was normal, and if I should go the urgent care or something. I was still feeling super dizzy and I was having some numbness in my left arm. But as I was texting with her I realized that yes, I probably should go. So I called my husband to come get me. My knight in shining armor dropped everything and came as quick as he could. In the meantime my friend came over to check on me and keep an eye on my kids while my husband and I were at the urgent care.

Thankfully, all my vitals and an EKG were normal. The doctor explained that it was most likely inflammation from my recent chest cold that got transferred and consequently trapped in my ear drum, and that it should clear up if I just give it time. In the meantime he gave me an anti-nausea medication to take in case the dizziness is really bothering me or making me feel unsafe. The medicine has helped tremendously.

I was just so ecstatic that I wasn’t having a heart attack and that I didn’t end up in the hospital because I have a family reunion to go to this weekend that I am SUPER STOKED about. Because I have an amazing family full of aunts and uncles and cousins and cousins-plus whom I never get to see anymore. I was so afraid that my stupid health issues were going to ruin that, so I’m just happy. Happy, happy, happy.

I did tell my husband – who knows how hard I try to be low maintenance, and loves me despite my utter failure at it – that I’m ready to get back to the “in health” part of our marriage vows. Seriously.