Category Archives: Multiple Sclerosis

Housekeeping, Multiple Sclerosis

What will I do today?

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Something occurred to me last night. I spent all day doing stuff. Stuff needed to be done, so I just did it. Without much thinking. Do you know what that means? Yesterday I was not fatigued. Not being fatigued means I can just get up and do things and not have to wrestle with myself about it. You just get up and do it.

I have to remember this feeling, this reality, for the days that I AM fatigued. Because those days are much more common, and those days I tend to beat myself up about it. I feel guilty on those days for not folding the laundry or vacuuming the floors or cooking good meals. I feel guilty about sleeping too much. Because some ridiculous little voice inside me tells me I’m lazy and not good for much. But that’s just not true, is it? Because the fatigue really does drag me down. I guess I live there so often I forget what non-fatigue feels like. Is this what it’s like for “normal” people? Is this what it was like for me pre-MS? It’s a wonderful feeling. Not being dragged down. The ease of standing up and walking to the other room. Deciding to put away the clean dishes and then immediately getting up and doing it. That’s something I know we take for granted. I know I did, before fatigue entered my life. But no longer. Now on days fatigue decides to step aside for awhile, I look around with awe, I breathe a little easier, and I ask myself… “What will I do today?”

Daily Snippets, Family, Funny story, Multiple Sclerosis, Photos

Grooming the garden

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Okay, it’s not a garden. I just use that word for alliteration’s sake. The boys are away at a baseball game and the girls opted to stay home. When Natalie asked if she could go next door to help her friend pull weeds, it reminded me that I had been wanting to trim the front bushes. And since it’s evening, and the sun sets on the back of the house, I decided now was a good time. But halfway through she came back over to help me finish up, so I had to get a photo! Cuz that’s a good way to help make the memory stick.

Speaking of memory, and as a sidenote, I met with my neurologist earlier this week. She addressed my concerns and asked if I had anything else to discuss or ask about. I said no. Later that day, it occurred to me that there was one concern I forgot to mention: the fact that I occasionally have trouble with my short term memory. Ha! The irony there, l tell ya. Can’t take me anywhere, is what I say.

Anyhoo, hope y’all are enjoying the summer so far. Stay cool!

Disability, Family, Friends, Multiple Sclerosis

Hot Mess

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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.

 

Daily Snippets, Family, Food, Friends, Kids, Multiple Sclerosis, Running

Might as well call it the May Update…

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Last month I published ONE blog post, and as it’s already the 10th of May, I guess I’m off to another slow start. Lest you think my silence is a bad sign, I’m poking my head out to let you know all is well. To prove it, I will now proceed with semi-coherent ranting about what I’ve been up to. What fun, yes??

So last Friday we ran another 5k race, my son and I. He absolutely killed his time from the year before, but since he had not really been training for it his recovery was pretty rough. He’s feeling better now, but the weekend he was in rare form, complaining of sore legs, not wanting to move around. I hadn’t done a lot of training either, and my finish time reflected that, but my legs felt okay after so I’m not sorry. I stayed on my feet the entire time and that’s my one true goal when I run, so I’m happy. My daughter ran the one mile race that’s not timed, and her goal was to finish, and girl, did she finish. She cramped up a little towards the end, but she was determined to not give up, and we are super proud of her for that. Both my kids are serious fighters.

I’ve been filling my weeks judiciously with shopping trips with friends, playing fetch with the dog, and going to various doctor appointments. I saw a dermatologist (Did I blog about that? I seem to remember) and discovered I do not have acne, but rosacea. Which was still possibly triggered by my round of steroids, but treated much differently. I’m also seeing my primary doctor soon in regards to what I’m calling “significant” joint pain in my right hip and knee. I suspect it’s just my osteoarthritis acting up and hoping it’s nothing more serious. We shall see.

I decided back in November to stop eating meat. It’s going fairly well, and I do feel better. I still eat some fish and some beef (the ground beef we buy from a local farmer) but only when other options aren’t readily available. I don’t have a great explanation for the change, other than the fact that I really, really love vegetables and grains and I’m disgusted by what I’ve read about the way meat is processed in this country. So my appetite for foods I used to love is pretty much gone. Like last night, I made chili dogs for the family and I totally thought I was going to eat one too. But then I just couldn’t do it. So I made myself a spinach salad, and it was delicious.

Also, somewhere between November and April I realized I had gotten a little too uptight about food, and it was spilling out onto my family members. I’m not sure how to correct that really, but I’m trying to loosen up. Geesh, that’s the story of my life, trying to loosen up. I’ll get there, eventually. Won’t I?

My son is turning 10 in one week, and he is beyond excited. I remember turning 10… double digits was a big deal. He is just as excited, and we will be throwing him a party right here at the house. I’m a little nervous about the dog, and the noise, but I think we’ll get through it. Just praying for good weather so they can all play outside for most of it. My only major responsibility for this party is making a cheesecake, which I can do days in advance and I love that. Piling too many responsibilities into one day doesn’t work very well for me, so I love when I can spread things out throughout the week.

We have an MS Walk coming up here in May, and I’m excited for that as well. I haven’t participated in one since just after I was diagnosed 7 years ago. I had decided this was a good year to get back on that wagon and pull my friends and family together to show me some support. Selfish? Maybe, but I’m not sorry. This girl is learning to step out a little and ask for the things she wants. And I want a gang of people I love walking with me on a beautiful morning in May.

I think that’s enough rambling for now, don’t you think? I pray you all have a blessed Wednesday and are able to soak in some sunshine!

Deep thoughts, Disability, Hearing Loss, Multiple Sclerosis, Visually Impaired

Surviving, and then some

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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.

Multiple Sclerosis

MS Confessions

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I am fatigued. Excessively fatigued. And my mood is frequently dropping to uncomfortably low levels. Unexplained sadness, feelings of hopelessness with no justification. I battled with depression years ago, so I remember these feelings. This is all too familiar.

However, I know I’m still suffering the effects of the prednisone, even though I’m done taking it. Also, I’ve been off my MS medication since the relapse, so I have hope this too shall pass. I’ll get the Tysabri on Friday and hopefully that will help my fatigue. My husband reminded me that exercise helps the fatigue, so hopefully this week I’ll make time to do some walking.

Meanwhile life goes on. I would rather be a part of it than be stuck in bed sulking, so unfortunately my family and friends will just have to deal with my sourpuss moments for now. For that, I am truly sorry, but I do hope to make it up to them eventually. We don’t know when, but eventually indeed.

Days like these I’m more aware of the constant battle that is MS, but it’s a battle I’m prepared to fight, and I’m not giving up. One day at a time.

2 Corinthians 4:8-9 “We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down but not destroyed.”

Daily Snippets, Kids, Multiple Sclerosis
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I’ve had lots going on over here in real life. Too busy and too exhausted to blog about it, but I thought I would check in real quick before I closed my eyes for the night. I realize how annoying that is when bloggers blog about how much they’re not blogging. I don’t care, I’m okay being the annoying one.

Things I’m excited about:

  1. I created a chore chart for the kids and it’s actually working
  2. I’m becoming a little less obsessed with what I eat
  3. I’m also pretty sure I’m becoming a vegetarian, and I’m learning to be okay with that
  4. My vision is improving and I’m done with the steroids
  5. Tomorrow I’m meeting with my favorite tattoo artist to talk about my next tattoo. Eeek!

So, you know, nothing crazy, nothing spectacular. But all good. I’ll take good all day long.

God speaks, Miracles do happen, Multiple Sclerosis

Angels Among Us

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I’ve been doing fairly well this week, dealing with this relapse with my vision and the steroid treatments. However, Friday afternoon I was approaching a meltdown. I was sitting at the kitchen table when it occurred to me that I was experiencing the dreaded MS hug. The MS hug is a neurological symptom experienced by many of us MSers. It feels, to me at least, as if I am wearing a super tight corset, and someone is pulling the strings tighter and tighter around my ribcage. It’s not dangerous or life-threatening in any way, but it can be painful. At a minimum, it’s extremely uncomfortable.

I think what bothered me about this the most is that I hadn’t experienced it in many years, and I felt that since I am currently treating a relapse, that I shouldn’t be experiencing any worsening symptoms. So, I was understandably freaked out. Knowing that I was probably overreacting, I called my mom so she could talk some sense into me. And that she did. While I freaked out, she reassuringly talked me off the ledge, consulting Dr. Google at the same time (she’s the ultimate multi-tasker), and gave me some guidance. We ended the call with a plan for me to take a warm Epsom salt bath, take a Gabapentin (the drug I take for the occasional fiery nerve pain in my feet and thankfully have plenty of), and watch a happy chick flick on Netflix. Oh, and we did a fair amount of Skyping while she helped me pick a movie to watch (I went with her suggestion of Under the Tuscan Sun). At the tail end of the call she showed me a great view of the Oklahoma sunset from her backyard. It was truly breathtaking, and left me speechless..

That sunset was the first of several ways God would speak to my heart, comforting me in very personal ways, letting me know that I am still never alone, never as long as I have HIM.

I woke up Saturday morning to a message from one of my very best friends, one whom I had purposely kept from reaching out to for help this week because she is recovering from a major surgery and I didn’t want to burden her further. It sounds so ridiculous in hindsight, and she would tell me that, I’m sure. Her message was so short and sweet, it cut right to my heart: “Love you. Miss you. And prayers for comfort.” And again I was left speechless. How could she have known how much I needed that? She couldn’t have. That’s all God right there. Grace.

One more though – ou all know I love checking the mail, right? Today my son beat me to it, so I didn’t get to run out to the mailbox like Blue, but when he handed me the mail, with a card addressed to me, I got just as giddy. A handwritten greeting card, from a familiar name. This was sent from a woman from my hometown. She knew me when I was in high school and she reads my blog. She wrote a beautiful note to encourage me and let me know she is always praying for me. I think she must have read the post about checking the mail and gotten my mailing address from my sister. But again, she couldn’t have known how much I was going to need that when she mailed it. But God must have stirred her heart to send me that note, and she took action, and my heart was comforted once again.

Guys, I believe in angels. I really do. And I believe God speaks to our hearts. I believe when we listen to that still, small voice and respond to it? We become God’s hands and feet. His angels here on earth. I have almost zero research to back any of that up, but I promise you with all my heart that it’s real to me. So you can take my word for it if you want, or you can try it on your own. Practice kindness and compassion. What can it hurt? At the very least you’ll brighten someone’s day.

Multiple Sclerosis

Follow up to the whiny post

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I’m feeling a little bit less whiny… a teensy less. I did get my eyes checked, and they were worse, as I had suspected. So we postponed my Tysabri infusion and instead got me set up for three consecutive days of Solumedrol, a high dose steroid that is given intravenously. This is a common treatment for MS patients when they have flare-ups of symptoms. I’ve had them before, and I’ve always responded well. So I wasn’t too worried about the actual treatment, but I was pretty devastated to be back in this situation. The MS flare-up. I had been doing so well, for so long, that I believe I got too comfortable. So I wasn’t really ready for this. But I suppose you never really can be ready for this kind of thing. That’s the cruddy thing about this disease, it’s unpredictability. But, with lots of support from family and friends, we got through the infusion part. Now I’m just back at home, with my routines, and taking oral steroids (Prednisone) to taper down from the high dose infusions.

I’m not crazy about the side effects of Prednisone, but I guess it’s a necessary evil. I do feel like my vision has changed already. I noticed Monday it felt like my visual field had opened back up a bit, at least up close. I still have difficulty recognizing faces from far away. I’ll go back to the neuro-ophthalmologist on February 17 and we’ll see what progress I’ve made. I’m hopeful.

So that’s my update for now. The Prednisone has me kind of moody, so I realize I’m lacking any real spark, but I’ll get it back – I promise! 🙂

Disability, Family, Kids, Motherhood, Multiple Sclerosis, Visually Impaired

One big whiny post

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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?