Category Archives: Health

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.”

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.

Love/Hate Relationships

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?

Waiting for the crash

Last night I stayed up way too late watching Pretty Woman on tv. Because I don’t know why. Because I had recorded it, and then started watching it not being entirely aware of the time, and then not being able to turn it off in the middle. Because you’ve gotta finish what you’ve started, right? I won’t get started on what a classic, feel good movie that is. It just is for me, and I don’t care if you judge me for it. Julia Roberts is just genius in that role. That’s all.

Anyway, so I was up way too late, and then had to get up early this morning to wake my daughter to get ready for the second day of horse camp. Then, even though I kept telling myself I was going to go back to bed, I just sort of kept moving on with my day. Luke and I rode bikes to get lunch at Taco Bell, my vitamins from Rite-Aid, and then ice cream at Sweet Sensations. It was a great afternoon, and then I thought maybe I would catch a nap before Natalie got home from camp, but I just, well, didn’t. Then I made dinner for the family and now I’m sitting here wondering when I’m going to hit that wall of fatigue. Yet, it just doesn’t seem to be coming. Hallelujah, praise the Lord, I’m operating like a normal healthy person!

This may be the healthiest I have ever felt. I don’t even remember having this kind of energy when I was in my twenties. I’m sure I did, I just don’t remember it, ha! So I’m writing this down so that I can remember how I feel and perhaps what I’m doing to feel so good. I believe it’s all the healthy things combined that work together to allow my body to operate at its best. Staying active with running, cycling, and walking. Eating my fruits and veggies, taking my greens daily, drinking lots of water. Even the celery juice I’ve been drinking every morning seems to be having a positive effect on my sleep quality, somehow. I know the celery juice is a fad right now, but you never know, this might be one that sticks. We shall see. But all the exercise and the healthy eating (with itty bitty cheats here and there) is really working.

The best part about feeling good is that I am feeling confident about the upcoming commitments I’ve made: leading a bible study, a discipleship group, and a Financial Peace class. I’m not afraid that it will be more than I can handle, or be too much to take on as a person living with MS. I do realize that none of this healthy living makes me immune to a relapse, so I’m keeping a level head about that, but I’m praying that all this healthy stuff I’m doing will make a relapse far less likely. I’ve always said I don’t want to let fear drive my decisions, and that applies here. I can’t say no to these exciting opportunities to serve God for fear that I’ll relapse. I’m trusting that He’s the one that gave me these desires and that He’s leading me down these paths, and if that’s true, He’ll take care of the details. M.S. is no match for my God!

Just an overall great day

Today was a really great day. Nothing out of the ordinary or spectacular, it was just a good day, so I wanted to share before I head off to bed.

The kids and I went to church this morning. Hubby was at a shooting competition so it was just the three of us. We had been preparing to ride the bus, but were able to secure a ride with the pastor’s wife at the last minute. So while we were a bit excited about doing something new by riding the fixed route bus, we were thankful we didn’t have to get up super early to catch the bus. We’ll hopefully try again on another day before the summer is over.

Church was great, as usual. I love my church family, because they are just like that: family. I was able to have a bit of time after the service to catch up with the some of the other women and invited two of them to BSF in the fall.

The afternoon was spent relaxing, having lunch with the kids, chatting with my sister, and doing a bit of bookkeeping for the church. By the evening, after dinner, I was feeling pretty sluggish and the sun hadn’t set yet, so I threw on some running clothes and went for a quick two miles around the neighborhood. I’ve been doing a pretty good job with resting my knee and doing the exercises the doctor gave me, and tonight’s run really showed me that it’s paying off, because I only took a few brief walking breaks and I had no knee pain throughout the run! Even after I got home I didn’t feel any pain. Not only that, but my pace was pretty strong for the time I was running, at around 11 or 12 minutes, which is pretty fast for me. I usually average closer to 13 minute miles. So I was pretty ecstatic about that run, and it really gives me hope that I’ll still be able to complete the half marathon in 56 days!

I’m excited about the upcoming race, but I’m even more excited about a lot of leadership opportunities I have coming up. Leadership is not necessarily my comfort zone, but I feel like God has really been working on me in this area, and helping me to step out of my comfort zone little by little. I can still be my introvert self and interact with others. I really enjoy getting to know people and hearing their stories. In the fall I’ll be leading a Bible Study Fellowship group, a discipleship group through my church, and Financial Peace University. That sounds like a lot, but I’m hopeful I’ll be able to keep a good balance and manage my time well enough to handle it all.

Shifting gears here, but I recently saw the dermatologist and I thought it was just going to be a follow up to get refills on the antibiotic for my rosacea, but the doctor I was seeing left the practice so I was seeing a new one. Not new to the practice, just new to me. I was very reassured from the minute he walked in the room because he actually examined my face under the light, and the last doctor never did that, which I always thought was odd. This new doctor is changing up my medication a little bit and putting me on something stronger, with the hopes that eventually I won’t have to take the antibiotics. He also gave me a prescription for a cream that should help the specific problem areas on my face. So that was a really positive visit and I went home feeling hopeful that we can get my face cleared up even more.

So the last couple weeks were filled with a couple doctor’s visits, my monthly Tysabri infusion, and lab work to make sure I can still take the Tysabri. Then in a week or so we go to the dentist for cleanings, and take the kids to the orthodontist for evaluations. Not exactly your idea of summer fun, but you gotta do what you gotta do. Being healthy is super important to me because if I didn’t have this energy, I wouldn’t be able to do any of the volunteering that I’m signed up to do. So I’m staying focused (i.e. mildly obsessed) with the running, daily exercises, eating my fruits and veggies, drinking my greens, and taking my vitamins. Staying healthy for this M.S. girl is kind of a full time job.

Product Feature: Chocolate Greens

I am the kind of person who once I find something I love, I stick with it. I commit. Seriously. I wore the same pair of Doc Marten sandals until they were literally falling apart (and was devastated to find I couldn’t replace them because they had been discontinued 10 years prior). I’ve been using the same scent of body wash since college (sweet pea & violet). I’ve been married to the same man for over 20 years. And my favorite band has not changed since the 90s (R.E.M.). I’m loyal, and I’m not crazy about change, especially if I’ve found something that works.

So believe me when I tell you this is a product worth trying. The greens was the first product that I tried from It Works many many years ago, and I still love it. This is a powder that you can mix with just water. It is soy-free, dairy-free, non-GMO, and vegan. Its loaded with 34 fruits and veggies and 52 herbs and nutrient rich superfoods. It also has a blend of magnesium and potassium to fight acidity in your body. Y’all, this stuff is a game changer. I love to eat my fruits and veggies, but I know I still leave a lot of nutrition on the table. This is a super easy and delicious way to give my body the fuel it needs to function every day.

I first tried the orange flavor greens from a vendor at a hot air balloon show several years ago and what I remember most is that the day after I drank it, I had one of the best bowel movements I had had in a long time. Because this was way back when I was still struggling with constipation and that was kind of a big deal. So I’m sorry if you think that’s too much information, but come on. We all do it. They even wrote a book about it.

Moving on though (no pun intended ha!!).. They didn’t keep the orange flavor greens, which makes me kind of sad, but they kept two great flavors with the chocolate and the berry. If you like sweets, you’ll love the berry. If you’re a chocolate lover like myself, go with the chocolate. I’ve been trying to make a point to drink this stuff every day because I feel very strongly that it’s contributing to how great I’m feeling lately. The mental clarity I have when I’m taking it is significant. The brain fog that comes with multiple sclerosis is very common, and its both frustrating and scary. To be honest, I hadn’t really noticed that the brain fog was gone until I stopped drinking the greens regularly for awhile and it came back. I was starting to feel crummy again and it dawned on me that the only thing that had really changed was that. So now I’m making a point to drink the stuff every day, and my brain is back to its happy self again.

If this sounds like something you would be interested in trying, or if you have questions, let me know! Or if you just want to chat about your health journey and what’s working (or not) for you, I’m all ears! I am always eager to talk with others about their successes and struggles. We people gotta stick together, right?