Category Archives: Multiple Sclerosis

Disability, Domestic Engineer, Driving, Food, Multiple Sclerosis

Weekly update of sorts

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I am in some super slow recovery type mode, so writing (book, blog, Facebook, journal) is not really happening. And that irritates me, but then I get irritated that I am so irritated. Vicious cycle. So today I am just going to bore you with this…

I had a rough walk to the bus stop this morning. I think the dog has gotten too big for me, and with her energy and drive, I can’t hold her back. She throws me off balance constantly. And with my balance issues, that’s a recipe for disaster. So I think we’re done with that program until she gets a little older and can be trained to behave better while walking. That is a thing with dog training, isn’t it?

So after the rough walk I put the pup back in her crate and went back to bed. The sleep probably helped, but I can’t tell. I’m still struggling with fatigue. However, I have managed to do the dishes and make dinner. Chili in the crockpot, and it smells delicious so far. Ground venison, onion, diced tomatoes, black beans, and chili powder. A simple recipe I don’t remember ever trying before, so I hope it turns out ok. We will have cheddar cheese, sour cream, and Fritos to top it off, so that can help with flavor. I thought about adding the can of spicy chili beans that has been in our cupboard forever, but the kids really don’t like spicy, and neither do I. We’ll see how the chili tastes in a couple hours, and I may still decide to add some.

I mailed an application today for the local public transportation service for disabled people. They drive the van right to your door and take you where you need to go. I’m excited about it. As my husband put it, it will give me a level of freedom back. I wouldn’t need to rely on him to take me grocery shopping, or to my umpteen doctor visits. It’s hard to describe how helpless it makes me feel, not being able to drive. I don’t miss the driving so much as I miss being able to go where I want to go. I am an introvert, so one of my favorite things is to go do things alone. Sit at the coffee shop and read or crochet, walk around a bookstore or mall just to browse the merchandise. But if you always need a driver, someone is always waiting for you, and that’s pressure I don’t handle so well. I HATE feeling rushed.

But this Spec-Tran, you plan each ride one-way, so no one is waiting. You tell them when you need a ride back, and they’ll send another driver. At least that’s my understanding. We’ll see how it actually works, but regardless there is no cause for guilt because this is their job, and they aren’t just doing it out of the kindness of their heart. Why is it that we feel guilt when someone does something for us out of the “kindness of their heart”? I mean, by definition they are doing it because they want to, not because they feel obligated. I know it’s not just me. But that still doesn’t make it rational or right.

Oh well. I declare that today is not a day for solving things. It’s a day for reflecting briefly and moving on! Coffee is waiting!

Anemia, Cochlear implant, Deafness, Multiple Sclerosis

Add blood disease to the list…

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I’ve been really tired lately. For the past couple of months, actually. I just kind of assumed it was circumstancial, or due to the m.s., or a combination of both. It would make sense. Fatigue and balance issues are par for the course with m.s., and we have the new puppy, and we’ve had lots of travelling and family events with the holiday.  So I had been telling myself that’s what it was, and it would ease up.

Only it wasn’t easing up, and I was starting to get very discouraged. I just couldn’t get back to that place of feeling like you have sufficient energy to move. And no amount of caffeine or sleeping seemed to help.

I went to see a new neurologist yesterday, and shared all of my concerns with her. She said I’m doing all the right things (though I am under orders to stop climbing on chairs) and I’m on the best m.s. treatment with my monthly Tysabri infusions. She ordered a gang of blood tests, since I hadn’t had one in quite some time.

She called this morning with some of my test results (while we were at the pediatrician with my son, who has been complaining of headaches and was up last night with headaches and vomiting. She was still waiting on further test results, but the one she was most concerned with was my vitamin b levels (or hemoglobin, or something). Whatever “they” are, they should be at 12. Mine are at 8, which means I am very anemic. Their words, not mine. The lucky thing is that my primary, who my neurologist was advising me to see regarding the anemia, is located on the second floor of the building my children’s pediatrician is in. So Mike called to see if they could see me right then and they were able to! So I left Mike with Luke and took the elevator to the 2nd floor. The primary doctor ordered more blood testing to get a better sense of what might be causing the anemia, prescribed some iron pills, and is setting me up to see a hematologist.

What FUN. After everything I went through last year with the trip to Mayo Clinic, hospital stays, plasmapheresis, etc., I was really hoping for some time off from doctors and testing. That’s clearly not happening.

I’m not exactly looking forward to more medical drama – not to mention the frustration and guilt I feel for needing my husband to take time off work to drive me everywhere – but I am somewhat relieved to learn that I wasn’t just making this up. I wasn’t just becoming a lazy person. There is a reason for this fatigue, and the headaches and dizzy spells. More importantly, there are solutions. Before today I didn’t know the first thing about anemia, but I know now that it is treatable, and depending on the cause, can sometimes even be reversed. That’s a hell of a lot more than I can say for multiple sclerosis. And compared to all of the mess I’ve been through with m.s. for the last 5 years, and the mess I go through daily with hearing loss, anemia looks like a walk in the park.

Now I just have to find the park!

Deafness, God speaks, Multiple Sclerosis

Wasting away

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So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:17-18 ESV)

Don’t I know it? I am 36 years young, yet daily I struggle with aches and pains and fatigue and several other issues more commonly associated with aging. I have my Kindle set with larger, high contrast fonts, and in my kitchen I have a special phone that offers live captioning for all my calls. I don’t use a walking cane on a regular basis, but that reality is not far off.

This is why I cling to such promises. This life here, this failing body of mine, is temporary. What really lasts, and what really matters, is what’s going on inside my heart. As of this moment, this heart is strong. Resilient, full of hope. I believe much of that strength is a result of the trials I have been through. So rather than wallow in regret or sadness, I choose today to smile and thank God for carrying me through. May I forever remain in the palm of his hand.

Deafness, Holidailies 2014, Holidays, Multiple Sclerosis

Holidailies 2014

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I’m a day late for this blog project (as I was with the thankfulness challenge, but I figure a day late is better than never, and who’s counting anyway?). I heard about Holidailies from a fellow WordPress blogger, Wendi over at Sudden Silence. I thought it sounded like a fun way to be “held accountable” to writing. Holidailies is basically a portal for blog entries written on mostly daily basis from December 1 to January 1. The posts don’t have to be about the holidays, though chances are most of them will be. Given the obsessiveness our society has evolved into having with these winter-time holidays.

That sounded like a segue into a rant about Christmas commercialism. I assure you, it was not. I’m not much of a ranter when it comes to blogging.

Oh! I almost forgot. I’m supposed to introduce myself for those who are new here. There is some info on my About page, but I’ll elaborate. I am 36, and I have multiple sclerosis. I was diagnosed in 2009 while I was pregnant with my daughter. It causes problems, which I talk about here some, but you’ll see that in no way does MS have me. II lost my hearing in the matter of one short week in August 2013 due to autoimmune inner ear disease, but I have since been implanted with a cochlear implant in my right ear. MS struck hard in September 2013 and took some of my vision. So being deaf, visually impaired, and easily fatigued from the MS all adds up to an unemployable me. Which gives me plenty of time to write, something I have always loved to do.

I do welcome your comments here on my blog, whether it’s to ask me a question or just to say hi. Welcome, welcome, and I hope you are having a wonderful holiday season!!

~Mindy

Food, Kids, Multiple Sclerosis, Photos

Thankful challenge day 6

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Today I am thankful for potlucks (or as I like to call them now that I am visually impaired, “mystery dinners”)! Luke’s soccer team held a potluck for the families for a last hoorah and a chance to award everyone their trophies. Luke had a great season and learned a lot about teamwork and focus. We are so proud. We drove the kids straight to Grandma’s house from the potluck, where they will be staying for the weekend. That leads me to another something I am thankful for, but I will save that for tomorrow. G’night folks!

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Multiple Sclerosis, Thankfulness Challenge

Thankful challenge, day 5

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Today I am thankful that I am still walking unassisted. As I have mentioned on the blog, I have MS. I was diagnosed in October of 2009, just one month shy of my daughter’s birth. Since then relapses have come and gone, and some symptoms still remain such as balance problems and fatigue, but overall I am far better than I had feared I would be. I was afraid I would be completely disabled within a couple years, but that doesn’t even scare me so much anymore. I have wonderful support from my husband, children, family, friends, and in this day and age we have great resources and tools to aid disabled people. Not walking no longer feels like the end of the world.

So today… today I am still able to walk my kids to the bus stop. I am still able to move freely around the house. And I treasure every day this is true.

God speaks, Kids, Multiple Sclerosis

Morning snippet

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Psalm 38:15 “But for you, O Lord, do I wait; it is you, O Lord my God, who will answer.”

Oh boy, do I wait.

I hate waiting, but yet I also hate to be rushed. I suppose I should give God the same courtesy I would want. I won’t try to rush Him. He will heal my eyes, in His own perfect time.

Until then, I must relish the good and take joy in what I have now. I am loving spending time with my kids this summer. We have taken walks together, played at the playground, gone camping, ate ice cream, built forts, danced around the living room. They return to school in a little over a week, and things will change all over again. I’m not sure I’m ready, but it’s okay because we take things one day at a time around here. And anything that can be done in a day can’t be that overwhelming, right?

 

 

God speaks, Miracles do happen, Multiple Sclerosis

Healing the blind

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Matthew 9:27-31: “And as Jesus passed on from there, two blind men followed him, crying aloud, ‘Have mercy on us, Son of David.’ When he entered the house, the blind men came to him, and Jesus said to them, ‘Do you believe that I am able to do this?’ They said to him, ‘Yes, Lord.’ Then he touched their eyes, saying, ‘According to your faith be it done to you.’ And their eyes were opened. And Jesus sternly warned them, ‘See that no one knows about it.’ But they went away and spread his fame through all that district.”

I read a lot of these stories in the Bible, the stories of Jesus or his disciples healing the sick. And I have to be honest, it especially pains me to read the stories of the blind being healed. In some ways it’s jealousy, that that type of healing hasn’t happened for me (yet??), but in other ways it serves as a good reminder that Jesus CAN heal me. Believe me, I know it’s entirely possible (if not more likely) that complete healing may not come until I am ushered through the pearly gates. But that doesn’t seem to provide much reassurance. I have moments of peace about my crummy vision, and even my hearing loss, but they are just that: Moments. Some last longer than others, and I am thankful for those. Those are the times I am either really focused on connecting with God, or focused on the people I am with. Sometimes it’s both.

Today I am kind of in the middle. A little melancholy, a little at peace, but very thankful to be alive. Someday my day will come, and my eyes will be opened. Here’s to the hope that it will come sooner rather than later.

Cochlear implant, Decluttering, Kids, Multiple Sclerosis

Grandma Deb

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I had a heck of a week last week. All good. My mom was visiting from Oklahoma, and it was wonderful to spend time with her. On normal days we Skype, so it was refreshing to have real interaction. She came with me to my audiologist appointment, and then we went shopping and had lunch afterwards. That was Monday, when the kids are at daycare. We had the kids home the rest of the week, which changed everything. The kids had a great time with Grandma Deb, and she took them to Jumpin’ Jax (a local bounce-house playground type thing). She also got to see Luke play baseball, and we did some shopping for yarn so I can make afghans for the kids. She helped me sort through Natalie’s clothes for the items that no longer fit, and then took us to Goodwill to drop off a whole trunk load of stuff we no longer wanted.

So while we got a lot of work done around the house, we also had a lot of fun as well. We never did get to decluttering that damn hall closet. Oh well. I’ll get it handled eventually.

I have always been close with my mom, so it makes me happy to see the kids connecting with her so well. They each have a lot of her character in them, and it’s even more apparent to me when she’s around. Natalie has her artistic streak, loving drawing, coloring, and dancing; Luke has her creative problem solving abilities.

When we first planned this visit we expected that I would need more help, but I think we were both surprised at how well I was doing, especially with the kids. I was able to show Mom how well I can hear the kids now that I’m getting used to the cochlear implant, and also how well the kids were adjusting to it. I will always be making adjustments, but we’re headed in the right direction.

By the end of the week, I was pretty fatigued. Partly because of all the work we did, but partly because I was due for my monthly Tysabri infusion. It’s the medicine I take to manage and hopefully slow down the progression of multiple sclerosis. I noticed a few months back that I get more and more tired leading up to the next infusion. So, three weeks of fairly normal energy levels, and one week of rapidly progressing fatigue. It’s good that I can recognize this, so I’m not feeling hopelessly frustrated to be so doggone tired for no good reason. It’s unfortunate that Mom happened to be here on that fourth week of fatigue, but in a way I’m grateful, because she was happy to help and quick to recognize when I needed to rest. And, being my mother, she is not shy about telling me to take a nap when I need it.

All in all, it was a great week. Summer is flying by, and the kids will be back to school in no time. We plan to continue to enjoy every moment we are given, and thank God for all the blessings. Carpe diem!

Multiple Sclerosis

Face plant

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My mom has come to visit! My house was already a frenzy, with grandparents returning my kids from the fair and a friend visiting to chat. When my mom walked through the doorway I was so excited to see her I rushed over to hug her and totally lost (misplaced) my balance and made a good face plant on the hardwood floor with my teeth. I was so happy, I was crying and laughing all while holding my mouth to check for blood. I think somewhere in the middle of all that I had knocked down my daughter too, so while I was lying face-down on the floor, I was looking and reaching over to make sure she was okay. She was fine. I was fine. The whole thing was hilarious.

Damn MS. I really need to remember my body isn’t cut out for running..