Category Archives: Multiple Sclerosis

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.

My dumb butt

A couple weeks ago I went to see an orthopedic doctor for some knee and hip pain I had been having. This pain started in the very first part of May and persisted week after week. I had been trying to ignore it at first, but it just wasn’t getting better, and I was starting to worry that something serious might be going on.

The good news is, nothing serious is going on. Though the pain has since subsided considerably (probably because I’ve cut back on my running), the doctor and therapist I’ve met with both agree there is still a serious issue that needs to be addressed. The ortho doctor told me I have a dumb butt. Seriously. But I guess it’s a real thing, only it has a much more technical name. According to Total Health Systems, “This is a condition called Gluteus Medius Tendinosis and basically when the muscle becomes inflamed it causes serious hip pain, which can lead to lower back and hip pain, tight IT bands, knee pain and injury.” So my butt muscles aren’t firing, and that makes other muscles work harder, and basically throws everything off. Oh, and my feet are also somewhat involved in this hot mess. Something about my arches needing support. They keep taping up my right foot when I go in. I’m not sure what it does, but they tell me my feet angle in a little bit and they may need to recommend some inserts to put in my shoes.

I’ve read that this dumb butt thing happens most commonly in runners, so this might be a result of my running, but the therapist seems to think it’s more a result of years of living with MS. Some muscles have just become weak, and others have had to work overtime to compensate, so I guess it makes sense that all this is happening. I’m excited about the treatment plan they have set for me, and really hope these exercises I’m doing result in a smarter butt. Hopefully we can get the issue under control soon so I can get back to regular running again.

What will I do today?

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?”

Grooming the garden


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!

Hot Mess

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.

 

Might as well call it the May Update…

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!

Surviving, and then some

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.