PT vs MS

After only 5 visits to physical therapy (including my initial evaluation which I don't really count as a session), I'm vastly improved. During my initial evaluation, there was a survey that had questions such as “What do you expect from physical therapy”, and “On a scale of 1 to 10, how difficult is doing blah blah blah”. I guess it's so they can somehow measure progress. Anyway, on my initial evaluation survey, I had a score of 43, with a goal of 70. We redid the survey today, and my score went up to 65!!

I'm feeling better to the point that I'm at the critical stage where I feel like I can do everything I used to do before I hurt my back. That's dangerous (okay, dangerous is a strong word, and even though I fancy myself a writer, I can't think of a word that fits better. However, I am open to suggestions) because I'm still not fine, just better, and there's a good chance I could undo everything I've done. Remember the post from last week about vacuuming? 

So as I said, I've been to therapy 5 times, and nearly every time I've been there, I've heard a familiar voice. The first time I heard this voice, I looked around, because it's a voice I've been hearing since I was a teenager, except for the 10 years we lived in Chicago. Sure enough, the voice belonged to exactly who I thought it was.

This person is a local media personality, and I feel like I know this person, but I'm not sure we've ever actually met. I really want to say hello sometime, but I also don't want to bother this person while this person is getting PT. I probably won't say anything, but I want to. If I were well-known, I'm not sure I'd want random people coming up to me and trying to talk to me while I was rehabbing.

I'm essentially at the halfway point of therapy if my therapist was right about 8 visits, and I do feel more than halfway better. My only experience with physical therapy was a looooooooooooong time ago when I had my knee surgery, so I was expecting Pain and Torture. I haven't experienced that here. Hmm? Oh, my knee surgery happened during my senior year of high school. A looooooooooooong time ago indeed.

The weekend was really hot here, and my MS was in full force. Even though my amazing husband put in the air conditioners, once I get overheated, it doesn't matter. Once I'm hot, my symptoms come blasting like the heat, and even if I cool off, the symptoms take a while to subside. Plus I've been having trouble sleeping again; I fall asleep all right, but I can't stay asleep. I'm up every hour to every two hours. Of course, when the alarm goes off in the morning, I feel like I could sleep uninterrupted for a long time.

By the time I find the balance between PT and MS, my PT will be over. Unfortunately, the MS will be here for, well, forever.

World MS Day

Most of the time when I write, I try to find the humorous side of things, the bright side of things, and just generally keep it light. Today is World MS Day. Some people think that World MS Day means that we are celebrating the disease. Um, no. I'm taking this day to raise awareness, describe what it does, and what it can do.

Since you already read my blog, you have an idea of what it's like for me. I'm going to let you know what it could be like for me; what it's already like for other people.

As you know, MS is an incurable disease of the central nervous system. The body attacks itself, specifically the myelin sheath around the nerves, causing the nerves to misfire.  

You've heard me say that it's like the plastic insulation around an electrical cord. When the plastic coating is intact, the cord works exactly like it's supposed to. If there's a chunk missing from the outer layer and water gets onto the actual electrical wiring, you've got trouble. That's what is going on inside someone who has MS; we're missing pieces of the coating that protects our wiring.

http://www.nationalmssociety.org/What-is-MS/Definition-of-MS

There are more MS drugs now than there have ever been, but none of them will fix the damage that already exists. Unless science discovers a way to repair nerve damage, we will never be cured.

Several years ago, a classmate who lives abroad was in town for a while. A bunch of us made plans to get together and do something. The day arrived, and it was really hot, like 87° super hot. I had to cancel at the last minute. The plans involved a certain amount of walking, and I knew I'd be an anchor to the group because I had trouble moving. How many times have you canceled plans because of nice summer weather? If you have MS, I know you have.

MS is a thief, a sneak, a rapscallion and a scalawag.

MS steals health by taking strength, temperature control, vision, bladder control, bowel control, stamina, cognitive function, memory, and in many cases, your ability to walk, your ability to work, your friends and social life. As if that's not enough, MS leaves other things in place of what it takes. MS gives you numbness, fatigue, tingling, insomnia, headaches, fatigue, itching, emotional changes, sexual problems, fatigue, walking problems (if you are lucky enough to still be walking), dizziness, balance problems, speech problems, swallowing problems, tremors, breathing problems, fatigue, and depression.

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

Because it's more difficult to move, I know I'm much less active than I used to be. Many days it's a mental struggle between telling myself what I need to do and telling myself what I have the ability to do. Some days, I feel like me, and some days I feel like a lump. And that's the other thing about MS; it's sooooooooo unpredictable. It's a day-by-day, hour-by-hour, minute-by-minute disease. Oh, but much less active. Yes. I've gained weight, and I'm sure it's due, at least in part, to being nearly sedentary because of MS.

If I have a day that's relatively pain-free, the fatigue is always there. Always. So if I have the ability to overcome the pain on a given day, I have to claw through the fog of fatigue. MS fatigue isn't simply being tired. MS fatigue permeates every fiber of your being. I've heard and used many analogies to describe the fatigue, but I'm going to use one I haven't said yet. MS fatigue feels like there is a stronger pull of gravity. What I mean is that something as simple as picking up a coffee cup requires us to use energy that's already in short supply for us. When we need to stand, it feels like we're fighting against an invisible force pushing us back down. Things that I used to do without thinking, like straightening the house, dusting or vacuuming now require planning and copious amounts of breaks. If I do this, I won't be able to do that. It's a constant battle of doing and resting.

The good days are so welcomed, but we tend to overdo it because we never know when we'll feel that good again. Take my physical therapy anecdote from the other day. I pushed, then I pushed the next day, then I was down for two days. Then I had a good day, did too much, and aggravated my back. Another down day.

I had physical therapy yesterday, and I had muscle soreness, but nothing horrible. My daughter had a concert at school last night, and 20 minutes of sitting in a wooden school auditorium seat undid much of the therapy's good. By the time we got home more than two hours later, I was in a lot of pain. I even left the concert to sit in my car for a while because I have heated seats. The back issue will go away; the MS-related issues never will. Let me reiterate: MS never goes away.

When someone asks me how I am, I'm always fine, or okay. I don't really know how else to answer the question. Do I answer with “I'm especially tingly”, “I can't feel my right hand”, or “I'm really mentally foggy today”? No, I say that I'm okay, the same way that you do when someone asks you. It's such an automatic question for us to ask, “Hi. How are you?” that we don't really expect any other answer besides “I'm fine, how are you?”.

Only I'm never fine or okay. Some days are closer to okay than others, but I'm never really, fully okay. I have some combination of the aforementioned symptoms on any given day, along with the ever-present fatigue. With summer looming, I'm dreading the heat but looking forward to the season. When it gets too hot for me, I can't even muster the strength or energy to cool off in the pool.

I went from being a workaholic to a person on disability because I discovered the hard way that I can't even work part-time.

I've gone back and forth about posting this as you see it. This post is so unlike me; unlike my regular entries. It's really not positive in any way, however, it's World MS Day. Ultimately, I decided to keep it raw and “real” because even though we look fabulous on the outside, on the inside we are short-circuiting like crazy from this incurable, essence-stealing disease.

Ibuprofen, Take Me Away!

Hello to you all!

I'm doing so much better since my back thing. I've been going to physical therapy; I went once for my evaluation, then twice last week. The first day of my therapy, I felt good, no great. I was able to do everything she needed me to do. The day after therapy, well, it wasn't so good. I was tingly, numb, in pain, plus the soreness of working muscles that have long been dormant. I did nothing that day.

N O T H I N G.

I was scheduled for therapy the day after that. I very nearly canceled that session. I had the phone in my hand to call. I decided to keep the appointment; see how it went, and see how I felt the next day. I felt okay after the session, and the next day I decided to really push myself. I did some shopping (which involved a lot of walking through big stores), I had a lunch with a friend, I did a little laundry. I even did a few of the exercises I'm supposed to do. When I went to bed, I don't think my head even hit the pillow and I was out.

I made the choice to let my MS rage for a while until my back is stronger. It was a really hard choice to make.

When my alarm went off the next morning, I was really sorry I had done so much. My daughter had a dance competition, and we had to be there at 7:45 am, in full costume and makeup. We also had to bring The Bin (a bin full of tights, accessories for the costumes, shoes, safety pins, scissors, needle and thread, baby powder, cosmetics, elastic, hair gel, and copious amounts of bobby pins) and all of her costumes.

Her classes did very well; 3 out of 5 dances received platinum scores and the other two were high gold.

Well, I started this post last night, and it was true when I started it. Since I felt so fabulous, I decided to vacuum.

All I'm going to say about that is “ouch”.

So now my house is partially vacuumed, and I'm partially sidelined.

On the bright side, my Mother's Day gift* got some use last night. The whole family sat by the fire and made s'mores. Well, my kids made s'mores while I sat by the fire and basked in the smell of toasting marshmallows. I love the smell of them, I just don't usually eat them.

The other bright note is that I've been looking for something to use as shade for the back deck. It's over fifteen feet wide and almost eight feet high. Finding fabric/ready-made shades or curtains was not going well. Invariably, the fabric I liked was at least $10 a yard, and I figured I would need at least 10 yards, depending on the width. On Pinterest, I saw that someone used drop cloths. That was my last resort because I didn't want plain white. But I didn't want the hassle of painting them, either. I was almost ready to go buy the drop cloths, and I found tablecloths in the exact colors I wanted in close to the right size! They were reasonable, so I bought them. The plan for today was to get them ready to hang once I finished vacuuming. Well, they are still in packages and my vacuum is still in the living room on the couch I was vacuuming.

Maybe I'll get some spray paint.

Yesterday we found these old metal stars I used to hang on my pool deck. They're about 18”, and the colors don't match my turquoise/tropical feel going on. I'd like to paint them in the colors of the tablecloths I bought. Ibuprofen first, then see how I feel.

*I don't think I ever showed you the finished gift. Here's what they look like, along with the s'mores making/eating. 

Do You Want a Ride in My Mercedes

My Mother's Day was less than stellar. In fact, to be perfectly blunt, it really, really stunk.

The high point of my day came in the evening when I got to ride in a Mercedes. Unfortunately, it was a Mercedes ambulance.

Fun fact: Riding in a Mercedes ambulance isn't any different than riding in a regular old ambulance. You still feel every bump like in the old ones.

So, the day started perfectly normal. My husband took my son to his hockey game, and I baked my husband's birthday cake. The cake was finished, so I took it out of the oven. While taking the cake out of the oven, my back felt weird. I thought, “Uh oh, better sit down”. I sat down, and once I was in the chair, I felt pop pop pop pop pop pop pop coupled with what felt like electric shocks. I couldn't move without excruciating pain. My poor daughter was terrified as we were the only 2 home at the moment.

I sat in the chair for some time, willing myself better. You saw how that worked by my Mercedes comment. During that time, my husband and son came home. I finally asked my husband to call a dear friend of mine who also happens to be an RN. She came right over, and between my friend and my husband, they pushed the computer chair to the couch where it took an agonizingly long time for me to get from the chair to the couch.

Once on the couch, they brought me ice packs as I tried to get myself into a somewhat comfortable position. Slowly, moving about a millimeter at a time, I was able to change positions to a somewhat straighter pose. I managed to get to lay on my side, and I actually dozed off for a while. When I woke up, for a split second I forgot my back hurt, and I moved.

Um, not the best idea.

The movement made my back spasm with such a fierceness that my legs drew up by themselves. The pain caused me to scream. I screamed so loud that my kids came running from upstairs to see what was wrong, and I hadn't called them; they just heard me scream.

I'm used to pain, I can deal with pain. I had 2 kids without any drugs. None. This was a different pain; a pain like I've never had before. I couldn't move any part of my body. Then came another spasm. There went my legs. I looked like I was having a seizure.

My friend said out loud what I knew inside all along. I had to go to the ER. I also knew since I couldn't walk, there was only one way to get to the ER, and that was by ambulance. Insert grawlix. Oh, in case you're not familiar with the term, grawlix is the series of typographical symbols (such as @#*&!) used in cartoons and comic strips to represent swear words. I just learned the word last year, and I've been itching to use it.

My dear friend took my kids to her house because I didn't want my kids to see me leave in an ambulance.

Anyway, my husband called 911 and had an ambulance sent to our house. I texted my friends across the street so they wouldn't panic seeing an ambulance at my house. In walk these two EMT's and I'm laying on the couch.

“We can't use the stretcher because it won't go through the door. Can you sit in the chair”?

Ummm, no, I can't move without through the roof pain.

This went on for a while, throwing out ideas. I felt bad because they were here for a while.

We eventually decided on the stretcher, and they would just use the back door where it's a straight shot to the outside, no turns. Each time they went to lift me onto the stretcher, I would spasm and scream. They'd put me back down,and we'd all just look at each other. Finally, I said, “you're just going to have to lift me onto the stretcher and ignore whatever comes out of my mouth, otherwise we'll be here forever”.

That's what they did. They lifted me onto the stretcher, and I screamed, yelled, and even cried. Yes, it hurt that badly.

So now I'm in the ER in a treatment room. Two cheerful nurses came in, “we're going to need a urine sample”.

I can't move.

“Oh, that's okay, we'll just roll you over and out a bedpan under you”.

No, you won't. It hurts to move. Find another way.

The cheerful pair just kind of stood there.

Look, I'm not trying to be a witch, or give you a hard time, but the whole reason I came by ambulance was because I can't move.

The cheerful pair left.

Doctor bodybuilder comes in, asks questions, examines, asks more questions. “It seems like your Psoas muscles. We'll do X-rays to make sure, but I'm sure it's your Psoas muscles.”

I googled it after he left, and it seemed to fit.

Nurse Ratched comes in (all 85 pounds of her). Tells me to pull down my jeans and roll over. She has shots for me. I tell her I can't move.

Without a word, she shoves me over, tugs down my jeans, and gives me 2 shots and leaves. I'm literally screaming and crying. My husband is in shock and disbelief. He said that I didn't make that much noise delivering the kids (as I'm lying there sobbing). Nurse Ratched asks my husband if he's driving because these shots will make me loopy and illegal to drive.

I'm still on my side because I still can't move. About 40 minutes later, he goes to ask Nurse Ratched when the shots will start working. I never did get loopy, and I only got mild relief.

A little while after that, they tell me that I'm going for X-rays. Oh goody. The X-ray tech was the exact opposite of Ratched. She was so nice and so sympathetic. I almost felt bad for telling her when it hurt. She apologized profusely when she had to redo some films. It was no big deal, it was only changing positions that was an issue. Once I was on my back or whatever, I was relatively okay.

So I get back to the room in the ER, a nurse brings me a couple of pain pills, and tells me that I'm actually discharged. I just need to be able to walk. Alrighty then! I swallow those pills, give them some time to work, and I decide no matter what, I'm walking. I'll walk to the bathroom, fill that cup so we can go home.

I fought hard to get off of that gurney and onto my feet. It hurt like the dickens, but I was walking!! I took the cup and disappeared into the bathroom.

I walked back to my treatment room, and she got my discharge paperwork all ready. I was free!! They sent a script for muscle relaxers to the pharmacy, which I took yesterday.

Yesterday was a lost day. I took drugs and slept.

I saw my PCP today, and she's sending me for physical therapy. Apparently, the muscle spasms are so strong that it's pulling one leg shorter than the other. She also prescribed steroids, which I detest taking, but I'm going to take them to help with the inflammation. My PCP thinks it's mostly my SI joints at play.

I'm glad to be going for PT because I don't think it's “normal” to have your back spasm like that taking a cake out of the oven. Even for me.

Mother's Day

I didn't want this day to come. My first Mother's Day without a mom.

Looking back on all the years I was lucky enough to have her here, I can't help but think of everything she did for me, for my Dad, for my grandmother, and for anyone who needed her help. She was so giving and loving; always, always putting others before herself. As moms go, she was exceptional, and as people go, she was the person you hoped your friends would be like.

If it was within her power to do it for you, she would. She was an amazing woman. Yes, I know most of us think our moms are amazing, but my mom really was outstanding.

This past September my daughter wanted Umma burgers for her party. My mom came, spent the day here making my daughter her Umma burgers. My daughter's party was a few days later, and my mom really wasn't feeling up to coming. She finally did decide to come, and it was later we found out (3 ER visits later) why she was hurting so much. My mom had a compression fracture in her spine, and that's why she was in so much pain. Despite that, she was here, celebrating at my daughter's birthday party.

What's an Umma burger, and why are they called that? Glad you asked.

When my daughter was first learning to talk, I would talk to her, and tell her things. One day I told her that Grandma was coming over.

“Umma?”

No, Grandma. Grrraaandma.

“Umma”.

My mom was Umma to my daughter, and then later to my son. Despite already having 9 other grandchildren who called her Grandma, I think she liked being Umma to my kids. It was kind of like their own little code, so we never corrected the Umma name.

The burger part comes from my mom's famous barbecued hamburgers. My mom was a great cook, but some things she made were simply extraordinary. Apple pie, potato salad, potato pancakes, puff pastry, and her famous barbecued hamburgers. I have a few from the last batch she made sitting in my freezer. I know we should eat them, but part of me just wants to keep them. I realize it's weird; don't judge.

Today also happens to be my husband's birthday. I'm really thankful for that. I don't know if it will soften the blow of not having my mom here, but it gives me something else to focus on. I just finished wrapping his gifts, and soon I'll take out the butter to soften so I can make his cake. I found a strawberry cake recipe not too long ago, so that's what I'm making today. Strawberry cake with whipped cream frosting. He loves the taste of strawberry. He even prefers strawberry milk over chocolate milk. Crazy person. I'm just kidding; I know it's a personal preference. Even if it is wrong.

My husband is also a one-in-a-billion kind of person.

He reminds me of my parents in many ways. Smart, funny, helpful, generous, handy, and loving. He's always here for us to do anything we need, and for other people, too. He's the guy who snow blows our half of the block, the guy who will give you a hand with whatever you need, and the guy you can always count on for a laugh. Not to mention he comes wrapped in a handsome package.

I always tell my daughter that when she starts dating, maybe 20 years from now, she needs to go for the guy who makes her laugh. Looks change, money comes and goes, but a sense of humor is forever.

This summer will mark 25 years that I met my husband. He still makes me laugh, and I love him more than I did all those years ago.

In my house, today isn't Mother's Day, it's My Husband's/Dad's birthday.

Weight and See

I'm stuck in exercise limbo, or in a vicious circle, or a catch-22, however you want to describe it. I know I would probably feel better if I did some form of exercise, but I barely have enough energy to make it through the day without exercising. If I exercise, I'll be using more precious resources that I can't replenish, but possibly, in the long run, I might be increasing my energy stores. Do I chance it, or do I not?

The reason I've been thinking of exercising lately is that I've gained weight for no reason. According to the patient boards, some people experience weight gain with Tecfidera, but I'm not leaning toward that cause. I just made a doctor's appointment for Monday, because I suspect my thyroid is acting up again. I have other thyroid symptoms too, lately. My hair is coming out in the shower, my nails are breaking, I'm always cold, and lots more. If you're curious about other symptoms, here's a link to the Mayo Clinic. 

I was diagnosed with sub-clinical hypothyroidism within 6 to 8 weeks of having my daughter. The sub-clinical part is important because it means that my numbers fall within “normal” range (what is normal, anyway?), but I had so many symptoms that fell under the hypothyroidism umbrella that my doctor decided to start me on thyroid medication anyway. What prompted the conversation, you ask? Glad you asked. I'll try to condense the explanation. Maybe. I can't make any promises, but I will do my best.

Well, I'm not off to a very good start, am I?

So I gained 70 pounds while I was pregnant with my daughter. Soon after delivery, the pounds started melting away. Considering that I was nursing, I figured 2 or 3 months later I'd be back in my own clothes. Well, I lost about 30 pounds, and the rest of the weight stayed. Okay, I figured I'd give it some more time. I was already eating right and taking vitamins because I was nursing, so that wasn't the problem. Still, the rest of the weight wouldn't budge. Then I noticed how tired I was. Everyone kept telling me that it was because I was a new mom and I was sleep-deprived, but this was different. It wasn't the tired that could be fixed with sleep. Besides, my daughter was sleeping at least 6 hours at a stretch by the time she was 6 weeks old.

Anyway, a friend mentioned thyroid problems, and I started to do some research. At that time according to what I read, about 80% of postpartum women had undiagnosed thyroid problems. My blood work all came back “normal”, and so did the radioactive scan. A sonogram revealed a ton of nodules in my thyroid, but that's very common in my geographic area. In short, I was “fine”.

Luckily I have a wonderful doctor (actually a nurse practitioner) whom I just adore, and she looked beyond the numbers. She started me on thyroid medicine. Within weeks, I started feeling better and losing the weight. Periodically, we would play with the dosage, and we found a good dose for me. I've been on this current dose for years, and I'm thinking it's time for a re-evaluation.

My stay awake medicine has been having minimal success. My coffee consumption has increased greatly, but again, with only minimal success. So, I'm guessing when my blood work comes back, I'll be getting different doses of medicine.

Speaking of coffee consumption, I got my mail a little while ago, and there was a small package in the mailbox from my most favorite sister. She sent this to me. 

I love her, and I love my little gift. For any of you who questioned my love of coffee, it's official. I am the Queen of Caffeine. It says so, therefore, it MUST be true.

DISCLAIMER: Any medical information I provide pertains to me, and only me. I'm not a nurse or doctor, never played one on TV, so I'm in NO WAY dispensing medical advice, Ever.

Fallen Cupcakes

I had some REALLY great news today!!! It sort of takes my mind off of my cupcake fail yesterday.

Yesterday was my son's “friend” birthday party. When my daughter turned 10, we celebrated “double digits” by having a regular family party, and then we had a “friend” party somewhere fun. My daughter chose the indoor rock climbing center not too far from us.

My son's party for turning 10 was at a local video game store. For about 3 hours, kids can play video games on all the different consoles. We got to choose (and prohibit) any games we wanted. At some point, the pizza and soda (included with the price of the party) were delivered. We ate pizza, sang happy birthday, had cake, and the kids still had a little time for gaming. They seemed to enjoy themselves.

So what does this have to do with my cupcake fail?

Well...

I decided to cheat for the sake of saving time. I used a cake mix instead of one of my usual recipes, and I decided to do cupcakes instead of a cake. So much for saving time.

The batter was actually delicious. After I filled the cupcake liners (with my new cupcake scoop which works pretty well), I scraped the bowl to taste the batter. It was good. Really good. The cupcakes baked beautifully. I tested a few with a toothpick, and they seemed done so I took them out of the oven. They had beautiful little golden domes. It almost seemed a shame to cover them with frosting. About 10 or 15 minutes later, I walked past them and they had fallen! Like a miniature souffle after you cut into it! I've never had that happen before and I wasn't sure what to do, so I put them back in the oven.

Don't do that.

When I took them out of the oven, I ended up with flat (but not as flat as a cookie) and crispy/crunchy cupcakes. Since it was about 11:00, and we needed to be at the party site at 2:30, I went to a local grocery store and bought a cake.

I've had their cakes before, and they are pretty good. Usually, for me, it's the frosting that I find inedible when it's from a bakery. Theirs isn't bad. I got spoiled because I think my sister's frosting is perfect. It's fluffy and not overpoweringly sweet. Mine isn't hers, but it's kinda close.

So I've been thinking about my cupcakes falling (more like imploding) yesterday, and then I got some really great news! I'm not being deliberately vague, but I can't share exactly what the news is because it's not my story to tell. Just know that anyone would have their day instantly brightened with this news.

What I decided about the fallen cupcakes is that it's the Universe telling me that I shouldn't bother using cake mixes anymore because really, what kind of time did I save by having to go to the store to buy a cake? Or, it was the Universe shaming me for having schadenfreude while looking at Cake Wrecks.

I didn't take a picture of my cupcakes because I never dreamed of using the saga of the cupcakes as a subject for a blog post. Lesson learned; photograph everything. I got the pictures I used from Marshmallows and Margaritas

By the way, I think Fallen Cupcakes would be a great name for a band.