Category Archives: Multiple Sclerosis

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.

 

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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.

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.