Category Archives: Multiple Sclerosis

Two Things

Two things I’ve been obsessing over this week: 1) I need to get back in the habit of running on a more consistent basis and 2) I want to try to get more writing done with my memoir.

The first one is easy, really. It’s just a matter of reminding myself that if I can just lace up those shoes and get out there, my fatigue will be kept at bay. It’s amazing how effective the regular running is at combating the MS fatigue I normally experience. It’s been the best weapon for fatigue, for sure. I’ve tried lots of things in the past but running has been the best. The tricky thing is, it only works if I actually do it. So my goal this week is to get back to it. I talked to my son about running, because he was saying he wants to start running to train for cross country in the fall (crossing our fingers they still let the kids run, geesh). So we agreed we were both going to go running every afternoon, and once he feels stronger – i.e. recovered from playing video games all day, every day – then he’ll probably go off and run on his own. He’s much faster than I’ll ever be but I’m so glad he slows down to run with me. He’s a lot of fun to run with because he does all the talking while I huff and puff alongside him.

That second thing I’m obsessing about is the memoir. This is much tougher, because I really have no clue what I’m doing writing a book. I am finding that I’m at the point of needing to organize what I’ve written so far, and I’m stuck. I’ve always been one who has to see to understand, so not having the ability to really get a clear visual of the outline of the book has me needing to brainstorm in order to get unstuck. I printed what I have so far, and this coming week I’m hoping to look at it under the crafting light and maybe take notes with a Sharpie, so I can see what I’m writing. I would really love to write this book by hand, but not being able to see what you’re writing poses a special kind of challenge. So. I’m not giving up with this, but I am having to be creative and think outside the box. If any of you are outside-the-box thinkers and have any suggestions for me, I’m all ears!

Seeing the whole picture

I had a good weekend. I can’t say it was much different than most other weekends, but after last weekend it was just nice to have some positive moments. Last weekend I was faced with a pretty frustrating situation. I had been informed on Good Friday that my long term disability insurance claim (the one they’ve been paying me on for 6+ years without issue) was being terminated. The letter of explanation detailed my level of activity with running and Bible study and so forth (based largely on what they read here in my blog) and my 20/20 vision that was noted in a recent visit to the low vision specialist.

Now, most people probably assume that 20/20 vision means perfect vision, but that’s not the case. I have a visual field defect, and that means I only see a portion of what others see. Of that portion that I can see, I see clearly, i.e. 20/20. So, to say someone has 20/20 vision does not always mean they are seeing the whole picture. And while I love to think about how this concept can be applied to life in so many abstract ways, my brain isn’t ready to go down that rabbit hole today. So maybe another day. Or maybe not.

All that to say, this letter of determination from the insurance company completely left out the details of my visual field defect. Of course, I’m appealing the decision and I have an attorney working for me to file the appeal. I’m really hoping and praying that God is in my corner on this one and that I’ll be able to restore my long term disability income. But if I’m being honest, I was livid when I initially received the news. Trembling, fuming, crying in the shower livid. However, I’ve had lots of time to pray about this and to hash out all my feelings with a few friends and family members, and I’m doing much better now. I’m still holding onto a little bit of bitterness, but I’m working hard to let that go. Last night I had written an entirely different blog post and I felt God nudging me away from the Publish button and towards reading James chapter 3. I’m so glad I responded to the nudging because James chapter 3 was all about taming the tongue. It was definitely a message meant for me. I love how God speaks to us so clearly, when we take the time to listen.

In other news – I haven’t been running much but I’m trying to get my stamina back up because I need to run a virtual 5k this week. I’ve never done a virtual race before but I signed up for this months ago and this is the week we are “supposed” to be running. I went for an almost 3 mile run yesterday, and only had to walk for a short portion at the end. In the first mile though, I nearly fell. I always wish I had these moments on video, because in my mind they are quite comical. I was running alongside the curb, on the street because there are fewer cracks to avoid, and at a whopping 13 minute mile pace, I ran directly into a fallen tree branch. I whispered profanities as I scrambled not-so-gracefully forward in order to escape the clutches of the evil tree branch. (If I don’t have a video, the least I can do is describe it Dramatically lol) I did not fall, thankfully, but I’m sure the van that was passing as I struggled to free myself got a kick out of the sight. I sustained only one tiny injury, a scrape on my shin, and am ready to get back out again as soon as the temperatures climb back up above 40 degrees.

This past week I’ve had a lot of great interactions with family members I don’t talk to nearly often enough, and that has been refreshing. Phone calls to and from my big brother and my oldest younger sister. A refreshing Zoom call with my cousins here in Michigan and down in Georgia. And grilling out with my husband and kids. All in all it was a great week. This coming week is when the online learning officially starts for the kids, so we’ll see how that goes. I’m winding down with BSF and FPU so those will be out of the way very soon. I’m looking forward to warmer days and praying that God would heal this world quickly, and sustain us in the meantime. Be well, my friends, be well.

Infusion day

I’ve been a little nervous about this upcoming infusion, as so much has changed from 4 weeks ago. We are now under a shelter in place order to stop the spread of the coronavirus. Essential workers and activities are still allowed, but people everywhere are taking all the advised precautions. I’m wearing a hand-sewn paisley face mask a dear friend dropped off for me last week, as well as a pair of latex gloves.

My pretty paisley mask

My husband dropped me off, and we tossed virtual kisses at each other as I got out of the truck. I walked into the cancer center, where my infusion center is held on the 2nd floor. In the entrance area, between two sets of automatic double doors, a man is sitting on a bench, wearing a face mask. I walk through the interior double doors and I’m summoned to a Purell stand and asked to sanitize the latex gloves I’m wearing. The woman at the station then asks where I’m headed. When I tell her the infusion center, she informs me that they have their own procedures and will ask me the necessary questions and check my temperature. I’m wondering if she can read my timid hesitation and confusion through my half-covered face.

I took the elevator this time, to get to the second floor. I usually take the stairs, but I still have poor balance and wanted to avoid needing to touch the handrail, even though I was wearing gloves.

On the second floor there are two women blocking the check in area. They are standing at makeshift stations, tall, round tables holding boxes of face masks. Each table is proceeded by a line of red tape on the carpet several feet away. This is where I’m asked politely to stand. Everyone is wearing a white face mask. I wait patiently for my turn.

When it’s my turn I’m instructed to remove the mask I’m wearing and put on the mask they have provided. They said I could wear my mask over the white mask if I wanted, but I declined and put it in my purse. I’ll save it for another day. I’m asked a series of questions and my temperature is taken, and the woman signs the form for me. So I don’t have to touch anything.

Once I’m cleared they tell me to stand at a red paper square on the floor, several feet ahead. I walk over and wait to be called but it’s tricky because the masks muffle all the sound and I can’t read lips that are covered, obviously. I forget how much lipreading plays a part in my speech comprehension.

A woman far ahead looks in my direction and points at me, because it seemed clear to her I wasn’t getting the message to come over to her desk. She checks me in, quickly, puts an ID bracelet on my wrist, and then I’m sent over to the waiting area. I find a seat away from other patients, breathe deeply, and wait.

When my intake nurse comes through the doors ahead, she sees me immediately and I can tell from her eyes that she’s smiling. As we walk back to my corner station, she mentions that it’s probably hard for me with all these masks on. She remembers me well; I’m a regular at this place. I say yes, that I forget how much I use lipreading until it’s not available anymore. It’s not impossible to understand, just a little more challenging than normal. Nothing I can’t deal with.

To be perfectly honest, the rest of the infusion went just as usual. It was a bit strange to see everyone walking around with face masks on, but I didn’t feel a heightened sense of dread or anything. It felt like business as usual for everyone. For all the nurses and staff, this has become their new normal (for now, at least) and they are well adjusted to it. Once I was sitting in my infusion chair, I felt completely at ease and had no reason to be fearful. And once I had my mask on properly, it was actually quite comfortable to wear. To quote the Dread Pirate Roberts, “I think everyone will be wearing them in the future.”

Dinnertime

I’ve always been a planner, and for the last several years I have established a routine of planning our meals on a weekly basis. I know meal planning is not for everyone, but it just makes things easier and way less stressful for me. With that last grocery trip, we are set for at least two weeks of meals. And since all the events have been cancelled, I now have something to fill out my fridge calendar:

But that’s not all the fun I’ve been having! Thursday I had a video visit with my new cochlear surgeon. We needed to meet so they could “establish care” which I guess just makes things easier when working with the manufacturer of my implants, especially when it’s time to upgrade to the newer model.

This coming week I have my regular Tysabri infusion. For the first time in years, I’m nervous about going to this. My last infusion was just days before everything shut down, but now we are in full blown shelter in place status and I am worried that I might pick up the virus and bring it home to my family. But my husband and I both agree (as does my neurologist) that the risk of another MS relapse is a far greater risk, and so I must get this infusion. The last time I missed a dose, I lost 60% of my vision, permanently. So I’m going, but I am going to be as safe as possible. Rather than riding the Spec-tran, I’ll be dropped off by my husband. I’ll be wearing an N95 mask (he had a few in the garage that his dad reminded him he’d given him awhile ago) and rubber gloves. I told hubby I thought I would look like some kind of freak walking into the infusion center and he said probably not, because everyone else there will be dressed the same. I don’t think the nurses are going to give me any grief over being too careful. So I’m sure it will be fine, but if you wanna mark your calendars to pray for me Wednesday, I’m sure it wouldn’t hurt.

I’ve really been enjoying our family dinners lately. We’ve always eaten together as a family, nearly every night, but family dinnertime feels different now. Our schedules are clear, so we are far less rushed. Nobody has anywhere they need to be. A couple nights ago we were all sitting around the table and legitimately enjoying each other’s company. We were talking about what we planned to do, where we planned to go after all this is over. My daughter brought up some great memories of a trip I took her and her brother on, to visit downtown Lansing. Together, we reminisced about all the places we visited that day and what fun we had. Then she said we should go again. Sigh. I love that girl. She’s a city girl, just like her momma.

I worry sometimes about my daughter because she’s extremely introverted, and she’s spent almost every waking hour of this quarantine holed up in her room, playing Roblox. But then she comes out and chats up a storm, telling me all about the fun she’s having. The other night we watched Dr. Strange together, at her request, and after the movie was over we discussed our favorite parts of the movie.

So, I feel like I’m bonding with each of my kids, in entirely different ways. It’s been really nice. This quarantine stuff certainly stinks, and it sure wasn’t what any of us would have planned for our lives, but I’m thanking God for the opportunities it’s giving us. Every storm cloud has a silver lining, and I hope that you are finding your silver lining amidst this storm.

Rosacea

Rosacea is that annoying, broke friend that moved in without invitation and just won’t leave. Except that you were never really friends.

I have type 2 rosacea. According to Everyday Health, “the second type of rosacea is called papulopustular rosacea or inflammatory rosacea. Its key symptom is chronic redness of the face, as well as an outbreak of red bumps and pimples. These bumps, known as pustules and papules, are different from actual acne and require a different treatment.” This doesn’t mention the pain it causes, but I can tell you it doesn’t feel great. It’s itchy and uncomfortable, and often painful.

I was on the antibiotic doxycycline for awhile, and that seemed to clear up the redness and most of the pustules, but I was still having the occasional break out and a growing concern for the health of my gut and other internal systems. Because antibiotics, yuck. I was on them often as a child and I have always wondered if that’s why I’ve developed all these autoimmune issues. Multiple sclerosis is autoimmune, my hearing loss was determined to be autoimmune, and rosacea is also an autoimmune disease. Autoimmune disease basically translates to mean your body is attacking itself. My tagline is, if anyone can kick my butt, it’s me.

But back to the rosacea. I was tired of taking the antibiotics so I talked to the dermatologist about an alternative, one that might work as well or better than the doxycycline I was taking. He prescribed a sulfur cleanser and an ivermectin cream. This was late last year. The cleanser wasn’t covered by insurance, but they only charge me $35 for a ginormous bottle that lasts me a couple months. The cream was covered, and since I had already met my maximum out of pocket cost for the year through my insurance, I didn’t even have a copay. Fast forward to January – I sent my husband to the pharmacy to pick up a refill for the cream and they wanted $50. For a tiny little tube, they wanted $50. He came home without it and I got to work finding an alternative. This ivermectin cream, called Soolantra, I believed was working, so I headed to my Facebook support group to see if there was a generic version. What I found was astounding.

There is not (yet) a generic version for Soolantra. But the good news? I was not the first to encounter this dilemma. It’s a very expensive, yet effective, product. The active ingredient, as I mentioned, is ivermectin. Ivermectin is a common medicine given to horses for deworming purposes. And since it’s given to them orally, it’s apple flavored. It’s also sold on Amazon. For cheap, and without a prescription. Which sounds a little iffy, right? Maybe something you don’t want to risk? But y’all, there was an overwhelming number of people on this forum, as well as on Amazon, reviewing this stuff and saying it was a total game changer for type 2 rosacea. (As a topical treatment, not to be taken orally, as one Amazon reviewer made the mistake of doing. ) I was really frustrated with the state of my face, so I took a chance and bought it.

I have now added to my morning and evening routine of brushing my teeth – I wash with the sulfur cleanser and dab my face with ivermectin paste. Ivermectin! Not just for horses! I haven’t been consistent with it long, so I still have the occasional spots popping up, but from everything I’ve read about any successful rosacea treatment, it typically gets worse before it gets better. Because I guess the really effective stuff makes the microscopic gremlins run for the hills, so to speak. I can deal with a blemish here and there once in awhile, so I’m not worried about it. I’m just glad about how my face feels. I don’t have those burning and itching sensations anymore. It just feels, well, CALMER.

I should note that I have some colorblindness that came with the vision loss from my MS relapse in 2013, so I really can’t see the full effects of the rosacea, nor can I really see when it’s getting better. I can really only gauge my progress by how it feels and when people tell me they notice a difference. So if you see me around town, feel free to comment on how it’s looking. I’m really not offended. Unless you think I’m just downright ugly, then we may have to battle.

Nearly 2 months

It’s been a long time since I posted. I know. And it’s been a nice break, I suppose, but the wheels start turning again, and I have stuff to share, if you care to listen.

For starters, I left off talking about the memoir I’m writing. Progress is not at a complete halt, but it’s really slow going. I’ll get there, I’m sure of it. I’ve been focused on a lot of things that are happening now, so that detracts from the writing about the past. It was tax season for awhile there, so I had a lot of tasks to complete for the church. Getting W2s and 1099s out, filing them with the appropriate agencies, that sort of thing.

I’ve also been fully immersed in my daughter’s involvement with Girl Scouts, including some meeting planning and selling cookies. Being a part of this troop gives her a number of opportunities to reach out of her comfort zone and discover what she’s really capable of. When she does, she oozes with pride and I am one proud momma for sure. My son stays busy with wrestling and he always works hard and is continuously improving, and that also makes me proud. We try really hard to raise good kids but we can’t take credit for most of what they do well. We just stand back amazed and thank God, praying that we don’t screw it up.

I’ve been running a little bit. I joined a free good form walking/running class with a friend of mine, so two afternoons every week we get to learn how to walk and run properly so that we don’t injure ourselves. In four weeks, when the class ends, we’ll all participate in a 5k race together. It’s been a lot of fun mingling with other like-minded people and I’m learning a lot. I hadn’t realized I had sort of lost some of the joy of running but this class is helping me to rekindle it.

My fatigue level was pretty high there for awhile following the holidays but it’s getting a lot better. I have no doubt the regular running is helping. I’m still quite tired a lot of the time, meaning that I’m sleeping a lot more, but it’s manageable. It’s hard to explain the difference between fatigue and being tired. I guess I only know the difference because when I’m fatigued, I’m not yawning or wanting to sleep. I just can’t seem to move my body. My legs are heavier and walking up the stairs takes considerable effort, but I don’t feel like I could sleep. When I’m fatigued, my mind is often still very active, so I sit a lot and think about what needs to be done, and strategize how to get it done in the most efficient way. So I guess it’s not all bad. You’ve gotta look at the bright side, or the clouds will consume you.

One of the things I’ve been doing a lot more of is crocheting, because that’s something that doesn’t require a lot of thought or energy, so it’s the perfect activity for when I’m fatigued. I’m finishing up an afghan for one of my nephews, and when I’m done I’ll start on one for the next niece or nephew. I have 14 nieces and nephews, so I’ll be at this for many years to come. The plan is to complete them while they’re still in school. I’ve done six so far so I’m not even halfway through. It’s been a lot of fun so far and I just hope the ones who have received their blankets are enjoying them.

I’m starting another Financial Peace class a week from tomorrow, and I’m pretty excited about it. I only have 3 registrations, but two of them are people I met through Bible Study Fellowship, so I’m hopeful they will work the plan and stay for the full 9 weeks. It’s always exciting to watch people go through this class and to see what kinds of things change in their thinking and their habits. A lot of people believe you can’t live without credit cards or a high FICO score or a car payment, and to watch them as they learn the truth of a better way, God’s way, of handling their finances is truly inspiring. I always come away from every week of class motivated to keep on working the plan in our own home, and teaching the principles to our children. I don’t mind doing the class for only 3 members (at least 2 are married couples) but discussion is much more dynamic when you have more, so I’m praying we get more people signed up. We shall see.

I hope you all are having a good year so far. I’ll try to post more regularly to keep you posted on what’s happening in my itty bitty world.

Reading and Running

Lately, I haven’t had anything very inspirational I’ve felt like writing. So I just haven’t been writing. For fear of boring you with all the details of my day to day. But the alternative to writing the mundane hodgepodge is to not write at all, and that’s maybe not great either. Because as I learned in a recent audio book I just finished “reading” (The Shallows, by Nicholas Carr, if you love science!), your brain is like a muscle. If you don’t use parts of it, they shrink and it becomes harder to access them down the road. So I’m exercising my writing muscle by writing even when I don’t have anything to write about. And as I’m writing, I’m sure something will come to mind. That’s always how it seems to work, anyway.

I’ve really been craving dark chocolate. I don’t know why I never keep any around the house.

I have not been running these past couple of weeks. I think after the bout of fatigue following Thanksgiving, I sort of fell out of the habit. I’m hoping to get back into it this weekend though. If the weather cooperates, of course. Treadmill running still sucks.

BUT! I do want to tell you how the Turkey Trot 5k went, but I want to be careful not to toot my own horn too loudly. So you know I was training, sort of, trying to increase my speed, and was hoping to beat my previous PR of 38:24. But even if I didn’t beat my PR, this was a memorable race. I ran it with my son, who is much faster than I am. I wished him luck and left him at the head of the pack with all the seriously fast runners, and scooted back as far as I could because I knew otherwise I would get trampled when the race started. This race was huge. I think the final count was around 5000 people. Maybe not large by other people’s standards, but it was by far the biggest 5k I had ever run. So with that many people the energy was pretty awesome.

The gun went off and I started running, and people immediately started zooming past me. I would have moved to the side to get out of the way, but I was so worried about tripping I stayed in the middle of the road where I knew there would be fewer potholes and cracks. Did I mention this was the first race I have ever run solo? No guide runners, no sign on my back to alert people that I was a deaf/blind runner. I had this sort of overwhelming sense – throughout the race – that I belonged there. That I was a real runner just like the rest of them. Note that I had not realized until this moment that I ever felt like I wasn’t one of them. So this was a brand new revelation, and I believe it is what propelled me forward, as fast as my feet would let me.

I was getting periodic updates from Runkeeper to tell me of my current speed, but I wasn’t paying attention enough to calculate what my average was looking like. I was just trying to enjoy the moment. So when I reached the finish and saw that my time was just coming up on 34 minutes, I was flabbergasted. My finish time was 34:03 – a full four minutes and 21 seconds faster than my last PR in May. I still don’t even understand how that is humanly possible. Not for me, at least, a woman with M.S. And certainly not in that short of a time period.

I’m still in a mild state of disbelief over the whole thing, but I’m now finally able to process it a bit more. I think the difference for that race, and my speed training on the treadmill leading up to it, is that I dared to run a pace that was just a bit past my comfort zone. Then when that felt comfortable, I pushed a little harder. So if I can just remember to push myself a little bit each time I’m out there, push the envelope so to speak, I know I can complete a full marathon next year, which is my next big running goal. I just have to be careful to be wise about it, and not push myself too hard or too fast. Know my limits, listen to my body and rest when it needs rest. I’ve learned so much this year about my capabilities, both mentally and physically, that I feel ready for this next step.

So I guess this post ended up being mostly about running. Sorry, not sorry. What else? Christmas is coming! I’m not ready, but who ever is? I’ll be ready when I need to be. I’ve been keeping busy with Bible Study Fellowship, bookkeeping for the church, and taking care of the home. Sadly the home sometimes takes a backseat to the other stuff but I’m working on fixing that. In my down time, my relaxing time, I’m doing a lot of crocheting and reading. I have a growing list of books I’ve started reading but couldn’t finish before the library’s digital copy expired, so I’m one by one working through knocking those off the Goodreads list. Not to say that like it’s a chore or anything. I still love my books.

That’s all for now folks! Tell me, what’s your favorite book to read over the holiday season?