Results Are In

My final weigh-in was July 15^th. You might remember that I was required to lose 20 pounds, but I was trying for 30 pounds. Well, I got really sick right at the end of the challenge and I missed the last 2 workouts. I started antibiotics a day too late, and I just couldn't push through.

I went for my weigh-in, and my final weight loss was 28 pounds on the nose. Soooooo close to 30 pounds. If there was any way I could have squeezed in a workout, I would have tried for 30. I just didn't have it in me. Still, 28 pounds in 6 weeks is not too shabby.

I would have loved to do another session, but my body was giving me a hard time the last couple of weeks. I think I'm going to do a session right after Christmas. It really should be sufficiently cool by then, and I should be fairly recovered. I hope.

I'm still experiencing weakness, but I'm working hard not to go back to the sedentary lifestyle I was living before. I'm still using many of the nutrition guidelines from the plan. I've been biking, I park fairly far from my destination so I can get some extra steps in. I'm still drinking my coffee black and really limiting my carbs.

I've gained a few pounds back, but I expected that since I'm not doing the intense workouts I was. I did bike 4 miles and I walked another 2 miles. In fact, my son struggled to catch me on the bike. I was kinda proud of that.

I still haven't decided if it's a relapse, heat related, or the false symptoms from heat. I just keep pushing myself while I can.

I give a lot of credit to my thyroid medicine. I really feel a WHOLE lot better. It hasn't really boosted my metabolism yet, but I don't even care anymore. It's awesome to not feel like the couch is holding me hostage. It's wonderful not to lose enough hair to make a wig with each shower.

This month, I have to get blood drawn to check my thyroid levels. It should be very interesting to see what the numbers are.

I'll keep you all posted with everything.

Because I Can

I am 5 weeks into my six-week challenge. So far, I've lost 19.8 pounds. One week to go to officially lose .2 pounds or 10.2 pounds for my personal goal.

Overall, I feel better since losing some weight. Until I start working out. Then my weakness becomes apparent. I got noodle legs and shaky arms. Instead of it being easier to do overhead presses, I'm finding I can't do them as well as I could 5 weeks ago. I can see my arms shaking, and it's not just a tremor. It's a full-blown shaking; you can truly see my arms straining to complete the exercise.

I knew my balance wouldn't improve, what with my black hole and all, but I can see it worsening. I used to be able to do moves when both my feet were on the floor without losing my balance (except for squats). Now, I'm losing my balance more frequently doing simple things.

Of course, it's getting warmer, too, and that does not help.

My symptoms always worsen when I'm overheated. I posted something earlier today from multiplesclerosis.net called “Is it an MS Relapse or a Pseudoexacerbation?”. Originally I'd been thinking that I was having a relapse, but after reading that article, I'm thinking it might be a pseudoexacerbation. This Friday is my last workout, so I'll see if I feel any different by the following week.

I read a few articles about muscle weakness and MS. The most informative article was also the most disturbing. “Damage to the nerve fibers (demyelination) in the spinal cord and brain that stimulate the muscles can also cause weakness. The muscles are not receiving the nerve impulses they require in order to work effectively – which often results in a reduction in endurance. Because the source of this type of weakness is impaired nerve conduction, weight training to strengthen the affected muscles is not effective – and may even increase feelings of weakness and fatigue.”

I've been wondering why I'm feeling weaker rather than stronger the past week. This might explain it. Or it might be from being overheated. Funny thing, this MS. Even after knowing my diagnosis for close to 13 years, I'm still not sure about what's going on inside.

Essentially, I'm either helping myself or causing more damage. Well, one thing is certain, it's easier moving less weight than more weight.

Still, I'm happy I did this challenge and jump-started my weight loss. In retrospect, a three-week challenge would have been more manageable for me. I didn't start noticing the extra weakness until week 4.

Only 5 more workouts left before my final weigh-in. I won't be skipping any of them, and I will do each one to the absolute limit of my abilities. Because I can.

What If I Can?

You may or may not remember that I wrote about my thyroid a while back. I wrote that I was going to try new thyroid medicine. WOW. What a difference!!

I went for a haircut. My stylist said, “You have tons of new hair coming in, it's maybe 6 to 8 weeks old! I mean it's all over, not just around the hairline like I usually see!”!

Well, what do you know, because I was on the new medicine about 8 weeks by the time I got a haircut. Slowly, I noticed I had more energy. However, my weight still wasn't going down. At all. My doctor said the weight loss could take up to 6 months. I was NOT about to wait around for 6 months.

I'd been seeing advertisements for a workout studio. I know a few people who have gone to this place and shed some weight. I decided to stop in and see what it was all about. Guess who signed up for a 6 week challenge? Yep. This gal.

Essentially, the challenge is to lose 20 pounds in 6 weeks, following the food plan and exercise regimen.

As the start date grew closer, that little voice of self-doubt started to creep in.

What if you can't do it?

What if you can't give up carbs?

What if you can't do the exercises?

The louder voice, the OLD me voice said, WHAT IF I CAN??

And so I started on June 5^th. It was hard to drive to the place. It was hard to walk in the door. It was hard to start to move. It was hard to keep moving. It was hard. But not impossible. I was DOING it! I was getting muscle aches and sore joints. I was feeling pain, but it was pain that could be eased with ibuprofen. I can't tell you the last time I had that feeling.

So in these 2 weeks, I've lost 10 pounds so far. More importantly, I FEEL really good. I'm kinda proud that I'm pushing through the exercises, and kinda proud that I haven't strayed from the meal plan. I've gotten stronger, more flexible, and I can't believe the energy. I haven't once been tempted to skip a session. I even bought workout clothes and sneakers. It's been YEARS since I owned sneakers.

I'm still unable to do a push up (even a modified one) and I don't have the coordination for burpees. I'm doing a modified burpee and something else instead of a push up. I'm using a support for balance when I need it. BUT I'M DOING IT.

My doctors would tell me that I would feel better if I exercised, but before I started the different thyroid medicine, I could barely stand long enough to cook. Once I was on the thyroid medicine, I really felt how I used to feel. It's amazing how I've been under a fog for years, but it's finally lifting.

So, how is all this affecting my MS? Well, my legs feel as though they are on FIRE when I go to bed at night. My balance and coordination have not improved one iota. I hurt all over. I feel like a tuning fork inside of my legs and arms. But guess what? I had all of that before I started working out, didn't I?

I'll keep you updated, but I've got 4 weeks to lose 10 more pounds officially. I'm shooting for 20 more pounds in these 4 weeks.

Axonal Destruction: Band Name or Condition?

I remember being really little and taking medicine. Of course, it tasted ungodly horrible, and inevitably I'd complain about the taste. My mom would tell me that the worse the medicine tasted, the better it worked.

Well, as an adult, I can't help but think of that little exchange, but I replace horrible “taste” with horrible “side effects”. You see, I've been on Tecfidera for about 18 months, and it's GREAT for me! I really don't have side effects to speak of from the medicine. The worst thing is that sometimes I get flushing in my face that makes my face feel like it's on fire. It doesn't last long, and off I go to do the things.

I recently had a neurologist's appointment. Part of the appointment was spent discussing the results of my second MRI in 6 months. It's the second one in 6 months to show a new lesion and one enhancing lesion. I never really heard the term “enhancing lesion”, or I don't remember hearing it. An enhancing lesion is one that reacts with the Gadolinium, and it's assumed that enhancing lesions are active lesions. Hmm? What's Gadolinium? It's something you get injected with when the doctor wants a contrast MRI. If you want to know more about it, you can read about it here: https://www.insideradiology.com.au/gadolinium-contrast-medium/

I learned another new phrase when used in the context of MS: Black Hole. Turns out that I have a Black Hole in my cerebellum. I'm pretty sure she used plural, as in Black Holes, but we'll stick with the singular for today. Does anyone else know what a Black Hole is? Or what it means to have a Black Hole in the cerebellum? Anyone? Bueller?

Let's go back to early biology and the basic parts of the brain that control which functions. We have a cerebrum, a cerebellum, and a medulla oblongata (thank you, Mrs. Gardner, my 6^th grade science teacher). Cerebrum: touch, vision, emotions, learning. Medulla oblongata (AKA Brainstem): Automatic functions. Cerebellum: Posture, balance, coordinate muscle movements.

So, what does it mean to have a Black Hole in your brain? “Axonal destruction and irreversible damage”. Incidentally, Axonal Destruction would be a great band name. Anyway, in plain English, it means that the nerves in the area are dead. To paraphrase the coroner from The Wizard of Oz, not only merely dead, but really most sincerely dead.

If you recall my post about tap dancing classes and the reasons why I left, this actually explains a lot! In reality, not clinically, it means that I stumble a lot. I feel like the floor gets tilted while I walk, causing me to do the drunk sidestep. Sometimes my body won't move the way I expect it to, even when I consciously will it to do something.

In my information overload state, I forgot to ask her where my enhancing lesion is. I suppose it doesn't really matter.

Okay, now after all that, you might think that I'm feeling really crummy, but for the most part, I've been feeling really good. Certain tweaks to medicine, new medicine, and more activity have helped. Plus, I'm still not smoking. When I started this post, I intended to write about how my thyroid medicine is helping, but I'll save it for another post. This one is already long enough.

Briefly, I want to tell you about the ultimate outcome of this visit. I get blood work in September, an MRI in November, and a follow-up visit in December. In December, we'll talk about changing my medicine if warranted. My next option is Ocrevus, the twice yearly infusion. That has its own risks, and in addition to the risks, my neurologist wonders what we do after Ocrevus if I need to change medicine. I've tried 5 medicines since my diagnosis in 2004, so it's not a needless concern. We'll see, right?

PS- How badass am I to cause axonal destruction and irreversible damage?? 

My Butterfly Story

Ya know how this is called “Trying to Find My Normal”? Well, here's a very good story illustrating why I chose that title.

This post is NOT intended to treat or diagnose any medical condition. I'm not a nurse or doctor, I don't play one on television, and I didn't stay at a Holiday Inn Express last night. In short, I have no medical expertise, real or imagined. I'm just sharing my story and some research I've gathered through the years. This is my butterfly story.

I'm calling it my butterfly story because of the butterfly-shaped gland in your neck called the thyroid. So many medical professionals overlook its role and yet it can cause so many problems. My personal experience is with hypothyroidism, but many people deal with hyperthyroidism as well. Again, I'm not an expert, but I'm going to talk about my experience with hypothyroidism.

My journey started over 13 years ago. My daughter was a month or two old. I lost about a third of the weight I'd gained right away, then I stopped losing weight. I was exhausted. My hair was falling out. My nails were breaking. I was itchy all over. I had achy joints. I was always freezing. Everyone kept telling me that because I was a new mom, I should expect to be tired all the time. I would have bought into that, except my daughter started sleeping at least 6 hours a night when she was about 6 weeks old.

I went to my doctor, who ran some tests. My labs came back “normal”, but she decided to treat me for hypothyroidism. Thank God my doctor looked beyond the numbers because soon after I started the medicine, I was back to myself. I lost the weight, I was “new mom” tired as opposed to “can't move” tired. I wasn't achy without reason and my phantom itchiness went away. My nails stopped snapping off. I found a normal!

Over time, I've had labs done to keep track of my thyroid levels. I've had thyroid sonograms and the radioactive thyroid scan. I've had my dosage upped until I got to the dose I'm currently taking. Unfortunately, at one point the thyroid medicine I was taking was unavailable, so I had to switch to my current medicine. I lost my normal.

If you do any reading at about hypothyroidism at all, you would know that different thyroid medicines are NOT necessarily interchangeable. Oh, the active ingredient might be the same, but the fillers and/or dyes can interfere with the way your body absorbs the medicine.

Fun fact: I've been plodding along on this stupid medicine for way longer than I should have. I have been feeling terrible and gaining weight. Extreme fatigue, hair coming out in clumps, dry skin, achy joints, phantom itchiness, and a bunch of other symptoms that you wouldn't even think are thyroid related. Like 300 different symptoms! I accepted this as my new normal.

Let me just say, I adore my doctor. I would not trade her for anything. Some of you who live near me go to her, too, and can attest that she's about the best thing that ever happened to medicine. However, she is only human. The last visit I had with her was because I wanted to talk about my thyroid. I've steadily been gaining weight for a long time. I was certain it was my thyroid because in addition to the weight gain, I've had many other symptoms but my labs came back “normal”. Oh, there's that word again! All right, I really need to watch what I eat and exercise more. I have trouble standing to make coffee, but I'm supposed to exercise? I did. For weeks, my calorie intake has been far below what I was burning. I gained 4 pounds. WHAT?!

So, I did more reading and found a different thyroid medication that I haven't tried. I asked my doctor if she would be willing to let me switch, and she sent the prescription to my pharmacy. I picked it up today and I'll start it tomorrow morning. I'll keep you posted whether it makes a difference. Funny thing, though. My doctor told me it will take months before I notice a change. Everything I read about this new medicine says it works faster. I guess we'll see, right? Maybe there will be another normal in a month or two.

My reasoning for sharing this story with you is that you should always trust what your body is telling you. I felt lousy almost instantly on that thyroid medicine, yet I kept taking it. I knew it wasn't helping, but I didn't push for anything different. Here's hoping this new medicine helps!! 

Here are some links if you would like to find out more:

Postpartum Thyroiditis

Hypothyroidism

A Boy and His Dog

My son and our dog have always had a special bond. She was an almost all black, malnourished puppy when we got her. She came with a different name, but we didn't feel it suited her, so we gathered as a family to change her name.

We went through a list of names ranging from typical puppy names to names of Russian leaders. I wanted to name her Voodoo, but I got outvoted. We finally settled on Midnight. Well, I settled for Midnight. Everyone else liked that name.

As I said, she was a malnourished puppy. She was about 3 months old and weighed about 8 pounds. When we took her to our vet, we were told that it was a good thing we got here when we did because there was a really good chance she wouldn't have made it. Happily, she took to good food very well. Verrrrrry well.

She was a puppy. A Lab puppy. Lab puppies looooooooooove to chew. They love to chew with their sharp little puppy teeth. I bought her a wide variety of puppy kongs and chew toys. I froze some with treats inside, I didn't freeze some with treats inside, and some were empty. We had chew toys inside the house and outside in the yard. She had exotic taste though, and preferred other things.

What other things?

An MP3 player, assorted Polly Pocket dolls, clothes, and accessories, Barbie accessories, a Chelsea doll, the remote control for our television, any paper except money (thankfully), pencils, crayons, and one time I caught her chewing a rock. She didn't chew shoes, though, and I was happy about that.

Through the years, she's eaten many foods that have dropped to the floor. We've watched with amusement when something would fall to the floor, Midnight would come running, discover it was celery (or lettuce, or tomatoes, or most vegetables), and look up as if to say, “Really, it's not a steak”. We've been amazed at what she will eat (fish and cereal) and drink. She will lap up my husband's spilled coffee, but not mine. He takes sugar in his, but I don't.

She has quite the sweet tooth.

One time, at one of our Sundays at the pool, a friend had his drink sitting on the deck. It was a fruity drink, pineapple juice, I think, and when he picked it up to take a sip, half was gone. Midnight liked it. We learned to keep our sweet drinks on a table.

We also discovered she was a digger. I used to have plants around my pool, and one that I was very proud of was a hydrangea. I've always loved them, and they wouldn't grow for me. I had finally gotten one to stay alive and actually thrive! Midnight liked it a lot, too, or she really hated it. Either way, she dug up that hydrangea and by digging it up, she destroyed it. That was the summer we counted 22 holes in our yard.

I started off by telling you about the bond between Midnight and my son, though, and there's a reason. My son's bus drops him off in front of the house at about 3:00 each day. Around 2:55, she will start looking out the window.

When she finally hears the bus coming down the street, she goes crazy! I was finally able to capture some of it on film yesterday.

I'd love to see your crazy pet videos and photos!! 

Adjusting. Again.

Last year at this time we had just finished moving bedrooms around, and we were getting ready to paint the downstairs. This year, I have no lofty redecorating plans. I'd like to get the computer room painted, and perhaps make it a dual purpose room; craft room/computer room.

When we moved rooms around last year, I lost my downstairs craft room because our bedroom isn't big enough for dressers and a bed. My craft room got moved to upstairs, but it is not terribly easy or convenient for me. I'm taking my time deciding, though, because the room is really small. If I don't plan it just right, it won't work at all.

Speaking of crafts, even though I wasn't posting on my blog, that doesn't mean my creativity was languishing completely. A couple of friends and I started getting together (mostly) weekly to craft. No, we didn't make plastic spoon Christmas trees, but we did scour Pinterest for other ideas. I made a cute garland for the divider between my living room and dining room, a couple of ornament wreaths (one was a Festivus gift), a picture frame wreath, a snowman hat, a hurricane centerpiece, a Christmas valance for my kitchen window, and a garland for my kitchen window.

I had forgotten how much I enjoyed taking a collection of items and fashioning them into something original. Well, to be fair, original in the sense that I made it, but inspired by someone or something else.

I also bought and painted ornaments for my kids. Every year since my kids were born, I've bought them ornaments for Christmas. This way, when they are on their own, they will have a good start for their own trees. Some years, I only buy one, some years, multiples. I figure by the time my kids are really on their own, they should each have about 40 or 50 ornaments.

It's peculiar; our craft nights usually started around 7:00, and I found that if I was using a new technique, I had a really hard time making that craft. If it was a technique that I've done before, I could do it without a hitch. A good example was the ornament wreath. I basically glued plastic ornaments to a Styrofoam form. I finished it, but I didn't really like it. As fate would have it, the original fell to its death, so I ended up making a new one. I did it in the daytime, and my head was much clearer about my method. Compare that to the ease of making the picture frame wreath which was basically gluing floral sprays onto the wreath; something I'd done many times before.

It was even more obvious when we decided to make a St. Patrick's Day wreath. I'm not a fan of the deco mesh wreaths, or I wasn't. I liked this particular one, though. I took my wreath apart twice before finally just leaving it alone the third time. I finished it, but it's not exactly how I wanted it to look. My head and hands just couldn't seem to play nicely together. My head was telling my hands what to do, but my hands just did their own thing.

Still, I look ahead, and I'm looking forward to trying new things. We're starting to gather ideas for Easter decorations. I normally don't decorate for Easter, but I've got some ideas I want to try. Maybe I won't try new techniques at night, though.

I'm Baaaaaaaaaaaaaaack

I was so excited to start tap class way back when! After a couple of classes, it was painfully obvious that I am no longer in control of my body. Sure, I could have continued, but all it did was remind me that...that what? That I have MS? That my legs weren't obeying my commands? That my balance is really kerflooey? Yes, all of that. All of that and more.

I know the instructor wouldn't have minded if I stayed in the class because it wasn't a performing class, but all the class did was make me feel bad. I felt bad about not being able to do most of the turns, I felt bad about needing the barre to do side shuffles, and I felt bad that I couldn't do an Irish. In short, I had to face the limitations MS has given me.

I didn't like it.

Most of the time, I can dismiss most of my symptoms. I have shortcuts and cheats galore. When it came to learning a new physical skill, my body wasn't having it. A shuffle is supposed to have 2 sounds when you do it properly. I could barely make my foot produce one sound.

So, moving on. Except I couldn't move on. I wasn't exactly in a depression, but some of Pollyanna hibernated for a while. I was filled with heaps of self-doubt that oozed into many parts of my life. That's one of the reasons I haven't been writing. I couldn't defeat the “Who Cares” dragon.

Well, who cares?

I do. I care.

I like writing, even if I'm the only reader I have.

So is Pollyanna back?

Mostly, she is.

Like Chicago said, feeling stronger every day. Quitting smoking did a LOT to make me feel empowered. I'm almost at a month now, and I really don't feel horrible cravings. Every once in a while, I think about smoking, but not in the context of wanting a cigarette. It's a great, yet curious feeling.