Well, this week of training turned out to be quite interesting! I started off with a leisurely walk on Sunday and ended with a whopping 15 mile run on Friday.
My Sunday walk I saw three rabbits, and I got pictures but only one was halfway decent, so that’s what you have below. Along with a picture of yours truly, of course.
This bunny was nice enough to stand still for a photo!
Tuesday and Thursday I ran mostly up the main road and less around the neighborhood, so I didn’t see any more rabbits, but I did run into a neighbor walking with her daughter and her dog, so I stopped to chat for a bit. That was a nice cap to Thursday’s run!
Here’s me after successfully taking photos of the bunnies before they all ran away.
Now let’s talk about the long run. First of all, I had to run on Friday since we had plans on Saturday and Sunday. Secondly, I had planned to run outdoors but at 6 am Friday the forecast showed possible thunderstorms. I did not want to take the risk of getting caught in a storm, so I pivoted to running on the treadmill. I really dislike treadmill running but mostly because I get so hot. So for this run I put a box fan next to the treadmill and that made it a lot more tolerable. This week the long run called for 15 miles. My treadmill automatically resets after 99.99 minutes of activity (remember Y2K??) so I knew I was going to have to break it down into smaller increments, which actually helped mentally as well as logistically. Three sets of 5, no big deal!
It really wasn’t a big deal. I ran a strong and steady pace for most of the run. I listened to The Princess Bride audiobook for the first 10 miles (if you loved the movie, I highly recommend the book) and then listened to my 90s music station on Pandora for the last 5. The farthest distance I have run since training for my first marathon in 2021 is the half marathon, at 13.1 miles. So you can guess that my body really struggled after hitting 13 miles and I really had to fight to keep going for those last two. But, I finished, and I’m happy I did. Now I get two weeks of rest before the next long run, which will be 17 miles. Yikes!
I was so happy to have completed those miles but my body sure took a hit. I think I hadn’t consumed enough calories so I was struggling to get enough protein and carbs back in my system before showering and collapsing on the bed for a good nap. Also, I’m having considerable pain in my right foot, originating from my big toe which I’m confident I sprained during my half marathon training and a brief experiment I had with barefoot running. It only hurt for awhile after that experiment, but I believe 15 miles was sufficient enough to aggravate it again. So I’m doing all the things. Resting, Icing, Compression, Elevation. And praying that it heals quickly so I can continue with my training. If it’s not showing improvement by Monday I may call the doctor and see about getting it looked at. But I’ll cross that bridge when and if I get there.
By the way, it never did storm. I think we got a few sprinkles but no storms after all. I could have run outside, dang it! Oh well, maybe next time.
Almost forgot the mileage… This week I ran 25.11 miles for a subtotal of 97.39 miles since official marathon training started, and when you add it with my half marathon it comes to a whopping 290.39 miles. One. Step. At. A. Time.
So. I ran another half marathon. This is the one I was training with a friend for, only she was not able to run the race due to a foot injury. However, she was sending me cheers from home throughout the race and was surely with me in spirit! Also, the race went as well as could be expected. Would you like to hear all about it? Grab a tasty beverage and sit back.
This particular race, Bayshore, has been kind of a dream of mine ever since I heard of its existence. The race offers 3 distances, the 10k (which I ran last year), the half marathon, and the full marathon. The races are located in Traverse City, Michigan, where my dad’s family essentially called home for many years. The small city is located in northern Michigan and is home to the Old Mission Peninsula, which is flanked by the Grand Traverse Bay. My grandfather owned property on the peninsula, on the West Bay, and my cousins and I spent a week every summer there. We have so many great childhood memories from our time “up north”. We ate cherries, we hiked, we swam, we strolled along the shore searching for Petoskey stones. My husband and I honeymooned at the cottage, sharing my childhood memories and making new ones. We’ve had family reunions there. My paternal grandparents are both now buried on the peninsula. The property my grandfather owned was eventually sold and the cottage is now gone, but a big piece of my heart still lives on Old Mission. So when I learned there was a race that actually allows you to run all over the peninsula? Sign me up! I ran the 10k last year, which was satisfying but slightly disappointing because only a small portion of the race I felt like I was ON the peninsula. The half marathon distance starts at the north end of the peninsula and follows the coastline of the east bay all the way south into town. This was the race for me.
Now I want you to understand that racing for me is terrifying at moments. Not being able to see the start from far away, being unfamiliar with the terrain. It’s not like home where I’ve memorized the potholes and cracks in the roads and sidewalks. My anxiety for this race began building several days before the race. But standing in the chute among all the other runners was somewhat calming. I was finally here. And I had trained for this, I was ready to go. Until I realized I was standing near the wrong pace group, among runners way faster than me. Not to worry, I simply shuffled back until I found my people. As I stood there waiting I checked my phone and realized I had lost my Bluetooth connection to my cochlear implants. It’s a good thing because reconnecting involves taking off my hat in order to remove my left cochlear implant, remove the battery, replace the battery to make it “discoverable”, put it back on my ear, put the hat back on, etc. So I’m glad I had that time to make sure I was connected. I rely on my music playlist to keep me going throughout these long runs.
Once I was situated and connected I got back to bouncing around to keep my legs warm and as I’m bouncing I realize there’s a strange stillness all around me. It occurs to me that everyone is looking in the same direction, some with hands on their hearts. Ah! It must be the National Anthem playing. I hope I didn’t do anything disruptive or disrespectful. It wouldn’t be the first time. No worries, carry on Mel.
I wish I could remember more of the details of this race, but I’ll share with you what I do remember. Coming up the first hill, I marveled at the vineyards stretched out on each side of me, and the East Grand Traverse Bay glistening in the morning sun ahead. The road leading me forward, filled with runners. I don’t want to forget that moment. Or later, coming around a curve to an open expanse, my view filled with brilliant blue water on my left and lush green evergreens on my right. I thought about taking a picture there because it was so freaking gorgeous but it wouldn’t have done it any justice, and it would have taken away from my enjoyment of it. I would have wasted the moment fiddling with my phone, most likely unsuccessful anyway.
I continued running, soaking in the atmosphere and the majestic scenery. All the anxiety had disappeared. I was thanking God for this experience. It was incredible. I felt strong. I was at peace. It wasn’t until I was about 6 miles into the race, that I started to really feel the burn and the soreness of my legs. I still felt strong, and my legs were moving well. That’s also about the time I started to see more and more spectators. Kids giving high fives, dogs wondering why all these people are running in the street. Posters lovingly prepared: DIG DEEP – a POWER button – WORST PARADE EVER. I love these races. You think making a poster and standing at the side of the road isn’t a big deal, but it IS. Without the spectators, it’s just a grueling training run. We NEED these people.
Around the 8th mile I was starting to really struggle because the weather had warmed up quite a bit. I decided to take my shirt off during my next walk break but with the deaf/blind vest and the sweat sticking to my shirt, it took longer than I anticipated. So by the time I got reset I was running through an aid station with a gang of onlookers to my comically awkward process. It didn’t matter. There’s no shame among runners, and these people understand and have likely seen it all. In fact, later in the race I was passed by a woman carrying her shoes, running in her socks to the next aid station. You do what you have to do. So it was a bit of a chore to get that shirt off but it was so worth it to lower my temperature a few degrees. It gave me the rejuvenation I needed to keep going.
The last few miles of the race honestly felt like drudgery and I just wanted to be done but those spectators kept me going! The runners were still moving ahead of me and I just kept reminding myself what I came for, and that was to complete this race. And I did! I finished! I set a new personal record for myself, and I did not fall. Though after the finish I was struggling to walk. My left foot knew we had crossed the finish line and just refused to lift, so I hobbled along the fence line until I saw my husband and kids walking up, all smiles. They escorted me to the recovery area and found me a chair and some ice cream. It was an incredible moment, getting to share this accomplishment with my three favorite people in the world. I tear up just reliving it.
This was such a great race. It was so difficult, but I have to accept that reality because I’m signed up to run my 2nd full marathon in October. Yes, yes I did. I swore I wouldn’t run another one but it turns out I lied. I’m glad I already committed to the marathon, because I think I would have chickened out after this race. It was a sobering reminder of how difficult and painful it is to run a lot of miles, but it was also a good reminder of the immense joy I still find in running.
It’s serendipitous that my devotional this morning actually talked about how we can have joy and pain coinciding. We can feel both simultaneously, and that’s an incredibly mysterious fact of life. There will be pain. Expect it. But also we have in us what it takes to keep moving forward and find joy in the midst of it. I am so grateful that God has sustained me as I continue to run. That He has given me the inner strength to keep challenging myself and doing these ridiculous races that both terrify and thrill me.
Isaiah 40:29-31 ESV “He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”
I see I haven’t posted in almost a month. I keep saying I’m going to post more frequently and then… well, I guess I get caught up with life and just forget about it! I went for so long obsessing over every little detail, being hypervigilant even when it wasn’t required, and I guess you could say I’ve turned a corner. And what am I seeing around that corner? Peace. Rest. Still waters. God has freed me from the crippling anxiety I’ve suffered from for far too long. It was such a part of my life I can’t even tell you when it started. And as He has been releasing me from the anxiety, the panic, the hypervigilance, I’m having these moments where I can hardly recognize myself. I am changed. And yet, somehow, I am still ME. Praise God, thank you Jesus.
So. What was I here to chat about?
Let’s see, I’m sitting here on a Friday morning listening to the birds, enjoying my first cup of coffee. Black coffee, because I’m now an intermittent faster. I have a couple friends who are IFers, and I was curious so I read a book they recommended called “Fast, Feast, Repeat: The Comprehensive Guide to Delay, Don’t Deny” by Gin Stephens. I was so fascinated by the science behind intermittent fasting, that I decided to try it. Most people do it for the weight loss benefits, but my primary reason was to see if it did anything for my energy levels.
I’m 8 weeks into this lifestyle and I did notice a slight improvement in energy at first, but that has seemed to level back to where it was, so that may have been unrelated. My first noticeable improvement was that I had no more bloating, which has always been a huge problem for me. I would stick with this lifestyle for that reason alone, but I also love that I’m not obsessing about food all the time. What am I going to eat next, when am I going to eat, will there be food where I’m going, do I have snacks packed in case I get hungry – God forbid I get hungry!, etc. etc. All that stopped. And I love it.
Then, the icing on the cake? I’m actually getting smaller. As of my last measurements, I’ve lost almost 6 pounds and several inches all over: 1 from each thigh, 3.5 around the waist, and 2 around my chest. It’s a very slow progress but I think they say the slower it comes off the better because it’s easier to maintain. I was okay with my weight where it was, even though according to the charts I am technically overweight (don’t get me started on those stupid charts). I just know I didn’t feel good. I had gained over 15 pounds after my marathon and no matter how hard I tried, how much I ran, it wasn’t budging back down. These sound like small numbers but I’m a short woman so proportionally they make a big difference in how I feel and how my clothes fit.
Anyway, so that’s one thing that’s been going on over here. What else?
I’ve also been running. Duh. I have been training for a half marathon with my friend, and the race is two weeks away! So we are officially in taper mode, which I’m loving. She’s not even sure if she’s going to be able to run it with me however, because apparently she’s been running on a foot injury. So now that she’s getting the medical professionals involved, they are recommending lots of rest and eventually she may need surgery. So, it’s not looking good, but we are still hopeful. Because we are both overachievers and often live our lives in denial of the physical realities that attempt to hold us back. Which is one of the reasons we are such great friends, I think. When it was determined that her foot pain was something more serious, she started riding her bike along side me while I ran our long runs, and that has seemed to work out pretty well. That’s not an option for the actual race, though, so I may be running it solo. We shall see.
I could go on and on about all the books I’m reading (5 at the moment) and the podcasts that interest me, but I’m afraid I’ve already taken up all of our time today. I hope that wherever you are reading this the sun is shining and the air is fresh. Shalom, y’all.
I titled this as if I do “end of week” updates regularly. Y’all know… I do not. I’m far from regular. But, I just put a cheesecake in the oven and felt like kicking back and writing about some of the exciting things that have been going on with regards to MS and running. I may have mentioned, I’m training for another half marathon. It’s at the end of May, and I’m running it with one of my best friends. It’s been challenging getting our training runs in during the winter but since we are both committed to this race, we are able to hold each other accountable (though, I’ll admit, it’s mostly her keeping me accountable. If I had my way we would be doing far fewer long runs.)
Anyway, during this training I was noticing, and my friend was able to see as well, that my left leg had become increasingly “lazy”. Lots of scuffing of the toe, slapping of the foot as it landed, etc. I think this had started a long time ago, but I hadn’t bothered with it since I wasn’t doing as much running. I talked to my neurologist about it at my last regular check up and she recommended I get some physical therapy to help strengthen those lagging muscles. So I’ve been going to physical therapy for a couple weeks and already I have noticed improvements. The first was that the PT noticed my stride when I run is very short, and she recommended lengthening that stride to get more use of my hamstrings and quads. I tell you, it’s definitely harder to run with that longer stride, but even with that I’m seeing my pace come up. I’ve shaved almost a minute off my short distance pace since beginning our training, without really trying.
Another improvement I’ve seen is that my left leg seems to be getting more involved in the walking process. See, normally I swing my body a little to give that left leg some extra momentum. Since doing these PT exercises, that’s changing. The PT has hooked my leg up a couple times to a stim machine to activate those muscles and I know that’s helping to get them working properly again. I’m having to retrain my brain to talk to those nerves that operate my leg and foot. It’s fascinating and exciting at the same time.
I’m still struggling with fatigue; that hasn’t changed a whole lot. However, I’m learning to change my mindset and be kinder to myself about it. I remind myself that it comes and goes, and that when it comes, I just need to rest, enjoy the slow down period, and ask for help when needed. My teenagers have been real troopers with that, so I’m grateful to have them around.
We’ve had a lot of illness and health issues going around our family for what feels like forever, but with spring comes sunshine and warm weather and I have hope that healthy days are right around the corner. I also hope that for you, dear reader, that you have healthy days and sunshine. May God bless you! Until next time…
If you’ve never been to the Mayo Clinic, as I had never been, you might have been just as awe struck as I was. It felt like a theme park for sick people. We had been anxiously awaiting this visit since it was first mentioned by the doctors when I was at my sickest. We felt like our options had been exhausted, and that this was our best hope for some answers.
We were scheduled to go in late January, at the height of winter storm season in Michigan. We chose to drive because it was much cheaper than flying, and Mike was perfectly comfortable driving the ten hour drive from Michigan to Minnesota. In addition, we didn’t know how long we would be there, because they don’t tell you that. They can estimate, but this is where the fascination for me came into play. They only schedule that first day of appointments. They wait until you are there, until they’ve met with you and run preliminary tests, before they schedule the next round of appointments on the following day. Appointments and procedures with real professionals, scheduled on the fly! They literally take it one. Day. At. A. Time. Everything is handled in this enormous complex with tunnels (so I hear, I never actually noticed any, but that’s not surprising given my state of mind at the time and my poor vision). It’s an incredibly well-oiled machine and I was so impressed, but I don’t ever plan on going back.
We left on a snowy Monday. The worst of the weather was in Michigan, it got progressively better as we drove through Indiana, and by the time we were in Illinois it was smooth sailing. There wasn’t much traffic through Wisconsin and after ten hours on the road, we arrived in Minnesota to a balmy negative 12 degrees Fahrenheit. It was very cold and a little windy but at least the sun was shining. We checked into our hotel and settled in to rest for our first day of appointments on Tuesday.
On Tuesday our first appointment at the clinic wasn’t until the afternoon, so we took advantage of the extra time and ran some errands. Got the oil changed on the truck, bought some necessary supplies for the week, and had lunch. Then we took the hotel shuttle to the clinic. Very handy. Our first doctor had a ponytail and reminded us both of the tall guy from Penn & Teller, though at the time we couldn’t remember which was which (it was Penn). This doctor asked all sorts of questions and did some basic reflex/sensory testing. He thought all signs pointed to vasculitis, but he needed to do more testing and gather more prior medical records. This whole time Mike was typing everything for me on his laptop, so that I could answer the questions the doctor was asking. We left knowing they wanted an MRI, blood tests, and possibly a plasmapheresis, so we understood we might be there for longer than a week. That was it for the first day, surprisingly, but I was confident we were in good hands.
Wednesday we were up early so I could have blood tests and several eye exams. They put drops in my eyes and took photos inside and out. It wasn’t Glamour Shots but it showed them what they needed to see. We thought we were done for the day but then we got a call from the doctor to come back that afternoon to discuss the results of his research on MRIs and MS. I don’t remember any details of these discussions. What I remember is sitting there, in silence, feeling dazed and overwhelmed.
Thursday I had a very early appointment for an MRI. This MRI was arguably the longest and loudest one I had had to date. Not that I could hear it, because even with my hearing loss they gave me ear plugs, but I could feel the vibrations from the noise. I told the technician afterward that my kids would love to have a picture of the bulldozer that ran over me. I also had an appointment with an ENT in the afternoon. I remember it well. We walked into the waiting room and a woman quickly took me back to the testing area, telling my husband to stay and fill out some paperwork. I told them I needed him with me but they insisted I would be fine. I wasn’t fine. The woman was trying to talk to me, and she was writing things down with a regular pen, which I couldn’t see. At this point I had been having people write for me with sharpie pens, because nothing else was dark enough. I just cried and said, “Can you please just get my husband?” They brought him back and conducted a few hearing tests. The speech recognition tests were impossible for me and I cried some more. The third test was in a separate room. This one was nice because all I had to do was sit with electrodes stuck to my head and wait. It was after this test that they were able to tell me what was happening with my hearing. I simply had a bad connection between my ears and my brain, and cochlear implants would likely work very well for me. This news gave me a lot of hope.
Later that day I met with the doctor again (ponytail Penn) to hear his conclusion about my vision. His determination was that it was permanent. Irreversible. There was nothing they could do to repair the damage to my optic nerves. Mike and I left his office and stood, stunned, in the lobby. I was devastated. I remember resting in my husband’s arms, just sobbing uncontrollably. A woman who had been at the front desk every day that week walked up to us, offering me a box of tissues and an invitation to join her family for dinner. Since we were leaving the next day and I was not exactly in the mood for being around people, we declined. However, she offered to be praying for us, and that really encouraged me. We believe she was Muslim and hoped our God would honor her prayers.
I left that day talking of guide dogs and reading Braille but Mike told me to stop. I was getting way ahead of myself, and we would deal with all that if we needed to, but right now we didn’t need to. We had two good pieces of news. One, the doctor had recommended a plasmapheresis when we got home, which they believed would stop any further damage from happening to my optic nerves. And two, I was a perfect candidate for cochlear implants. So, there were things to be hopeful about.
And that was our final consultation! We were driving home the next day. Everyone at Mayo Clinic was extremely helpful and kind. I had hoped for better answers by the end of the week, but I was grateful to learn that I was not dying and that there were steps I could take going forward.
Trauma. It sounds like an alarmist word. Until you find that it’s exactly the right word to describe what you’ve been through. You didn’t know it at the time, because you were a child and the adults in your life were telling you this was normal. That you had a good life. That you were just overreacting. It was probably just those teenage hormones lying to you about how bad things were. But hormones don’t lie. People do.
And children grow up and start remembering. Often not in clear memories, but in physical responses to situations bearing resemblance to what you went through. That part of your brain remembers, and it’s trying to protect you. Don’t ignore it. Get help. Because while the danger is no longer out there, it is now within you, internalized and threatening to repeat all the same behaviors that were normalized for you growing up. The rage attacks, the love bombing, the blame shifting, the gaslighting, the confusing and conflicting messages. You’ve got to end the cycle. Work on you. You are the only one you have control over.
All these terms, these are buzzwords. But what they are to me are light bulbs and with them someone finally turned the lights on when I’ve been stumbling around in the dark for years, decades even. The lights are on and now I’m standing in this maze and trying to find my way out. It’s not easy. But I have cheerleaders, faithful supporters standing to the side shouting directions, whispering life giving encouragement. I’m going to get out of this maze. I must. I am a trauma survivor.
All of that I wrote, previously. But I feel it needs a little more explanation. See I’ve been living in a constant state of anxiety for as long as I can remember. And late last year I discovered that wasn’t normal. The racing heartbeat, the tremors, the cold sweats, the nightmares, the panic attacks. These were symptoms of complex ptsd. I sought help from a trauma therapist back in November and I’ve been seeing her ever since. Twice a week, sometimes three, to work through and properly process the trauma I’ve lived through. My therapist uses a method called EMDR, eye movement desensitization and reprocessing, and it’s fascinating. I had stumbled across it while doing my initial research into what I was experiencing and it’s turned out to be exactly what I needed. Because traditional talk therapy is difficult when you have trouble with your memory. I won’t go in to the specifics of it, because you can look it up for yourself, but I will say it has worked it’s magic rather quickly. In four short months I am far less triggered by every day stressors. I’m finding it easier to relax my shoulders. I’m sleeping through the night (most of the time). The nightmares have waned considerably. I’m getting better at responding as opposed to reacting.
So we’ve stopped the bleeding, so to speak, but I still have a lot of healing to do. My mind is still replaying toxic messaging, I’m still doubting my every decision, my self-worth. I’m still desperately seeking validation every where I go. But I am on the mend, I’m getting the help, and that’s what matters most.
This is a big reason why I have not posted here on the blog since January. Other reasons are related to my physical health. Some of it covid related, some of it related to being a pre-menopausal woman. I think I’ve been anemic for some time, who knows how long it’s been building, but it ended with a trip to the ER the day after my birthday and my first ever blood transfusion, hurray! So I’m seeing doctors, I’m taking medications, I’m on the mend. However, this has all wreaked havoc on my energy levels and my ability to run, which *KILLS* my pride and frustrates me to no end, but I’m trying to remember this is just a season and it won’t last forever. I will get back to running, and I’ll update y’all when that happens (which I hope will be soon, since I have races on the calendar calling my name).
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 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.”
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.
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.
This is not a post about people. This is a post about food. Just a warning, that’s all.
So I’ve been becoming more and more fed up with my belly area lately. I’m trying to accept that it will always be pooched out a bit more than I would like, because I have somewhat of a swayed back. However, it bothers me that it seems to change in size on the daily. Just last weekend at the Girl Scout camp I was joking with the other moms that it was so bloated and firm it felt like I was pregnant. And while that’s funny, and we chuckled about it, it’s also rather uncomfortable. So I have been doing more research into what foods cause that type of bloating and it turns out the biggest culprits are my favorite foods. Duh, right? Coffee, breads, pastas, protein bars, raw veggies! Oh, and sugar, which is of course, in everything under the sun.
My plan of action? I’ve started by doing a better job of reading nutrition labels to look for sugar content in addition to carb and protein content. And stopping to think before I eat something, and ask myself, “is it worth the bloated belly?” Sometimes I’ve decided it is, but more times than not I’ve been able to say no, and find an alternative snack or meal. One of my favorite replacements when I’m craving chocolate (which is daily) is to drink a glass of my ItWorks chocolate greens. I had been drinking it every day and somehow got away from it, so it’s good to have that resource. It curbs my chocolate craving without the inflammatory sugar, and as a bonus it provides me with all those nutrients my body needs to work better. Win-win.
I can avoid raw veggies by roasting them instead, no problem. And I think I can find replacements for the flat-out sugary foods. Its the breads and pastas that will be tricky because boy, do I love my carbs. I’m not the greatest cook, and what I am able or familiar with cooking pretty much all involves pasta or rice. I’ve not been real impressed with substitutes like cauliflower rice and zucchini noodles. I think those are going to be flavors and textures I just may have to endure at first and hopefully I’ll grow to like them.
I am still not eating dairy, because it was causing major headaches when I ‘cheated’, and I noticed the nerve pain in my feet was starting to come back. So that’s one inflammatory food that I have already eliminated. I have put eggs and some meat back in my diet, but only in small portions. With this half-marathon training I was feeling the need to find more variety in my protein sources, and I’m not creative or kitchen savvy enough to do it the way the actual vegans do it. My husband calls me a “chea-gan”. Vegan who cheats, get it?
So, that’s where I’m at. I guess. Trying to work on the inflammation. It’s challenging saying no to the foods I love, yes, but I noticed right away that it was making a difference in how I feel, so that motivates me to keep going with it. Over time I’m sure I will find more appealing alternatives and it will become a habit, just like all the other health choices I’ve been making over the years. I’ve got to stop loving the foods that seem to hate me. It’s just dysfunctional, you know?
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 