The Flying Ring

A few months ago, our family got together to commemorate my sister's birthday. It was good to see everyone, especially under better circumstances. There was food, cake, laughter, and gifts. Scattered tears, too, but they were mostly dried by the laughter.

My brother's church sent a live plant arrangement to my sister's services. It was lovely. My brother and sister-in-law took it home afterward. What they did with the planter, though, was wonderful. They split it up and gave each of us a plant from that arrangement. I actually still have mine, and it's doing okay!

I'm usually not good with houseplants (see the Boston fern post). However, I do have a plant that belonged to my mom. That plant was part of a live plant arrangement sent by my employer to my father's services in 1996! When my mom came to live with us, the plant came too. Let's think, it's been here since 2013 and it's still growing! I guess it depends on the plant.

Back to the family function, though. Sorry, I always get sidetracked!

The other gift was that my niece made small photo albums for each of us. It's full of lovely photos of my sister. It was weeks before I could even open the book. I still can't look at it without crying, but it's a wonderful and thoughtful gift.

Lastly, my sister's daughter (yes, she's my niece too, but I didn't want to call her the other niece) gave us each jewelry that had belonged to my sister. It must have taken her a long time to choose each piece because she gave us pieces that were perfect for us.

She chose a beautiful necklace for my daughter. After looking at it for some time, I realized that I had given that necklace to my sister. My daughter loves it. My niece gave me pieces that she knew I had bought for my sister (including the sister Alex and Ani bracelet) through the years. She also selected a Celtic-looking filigree ring for me. I've worn it every day since.

Every time I come in the house, I take off my rings. I can't leave the house without them, and I can't wear them in the house. One of my (many) quirks. I put them in the same place all the time so I know where to find them. I've kept the photo album there, too, so I can always see it.

One day last week, the photo album and the ring that belonged to my sister crashed to the floor. Just those two things. In addition to that ring, I always wear my wedding ring and another ring. I keep all 3 of them together, sometimes in a pile. Neither of the other 2 rings left their resting place, just the one from my sister. Also near the photo album were envelopes with my daughter's recital tickets. They didn't come down, either. Just the photo album and the one ring.

There wasn't a breeze because my windows have been closed. My wonderful husband put in the air conditioners when it first got hot. Even if there were a breeze, the recital tickets should have blown off before the photo book.

Draw what conclusion you will. I know what I believe, and I don't believe in coincidence. A few weeks before the flying ring, I noticed some pictures were crooked. As I was straightening the pictures, I told my daughter that my sister and I would send this meme to each other. 

Was it my sister visiting me? 

Sound the Alarm

It's been a while since I wrote about my MS. Oh, stop groaning; it's not going to be a whiny post today.

Anyway, it's been a while since I wrote about MS. Two medicines ago, in fact.

Last time I wrote about MS, I was on Tecfidera. I had virtually no side effects on it but I was concerned about compliance when we go on vacation. Tecfidera is an oral medication that has to be taken with food twice a day, ideally at the same time. I wasn't sure I could commit to doing that while we're away. After talking with my neurologist, we decided to try Tysabri* again. I was on Tysabri many moons ago, but my old neurologist stopped it because my white cell count was starting to climb. He didn't want to risk me developing PML.

Anyway, my current neurologist seemed to think it was worth trying again, especially given my track record of blowing through treatments. Up to that point, I'd taken 5 different MS medicines, including Tysabri.

After my insurance company approved Tysabri for me, I scheduled my first infusion.

Now I'm in the infusion center. The nurse had no problem starting the infusion, but the alarm insisted on beeping repeatedly, to the point of being obnoxious. As the alarm kept ringing and the nurse decided to change my IV, I just kept thinking that this was the Universe's way of telling me that I shouldn't get this infusion.

Ignoring the feeling inside (something I know better than to do), I let the infusion proceed. Because really, what am I going to say? “Um, the Universe is telling me not to get this infusion”?

The nurse changed the IV, and the Tysabri started flowing freely into my veins. And I got itchy. First the back of my neck. Hmm. Coincidence? Then my lips started tingling. Double hmm. Then I started coughing, sneezing, and felt my throat constricting ever so slightly. Then the IV alarm beeped again.

When the nurse came over to check my IV, I told her what was happening. She checked my back and the back of my neck. Lo and behold, I was breaking out in hives. Of course I was. The nurse stopped the infusion, called upstairs to my neurologist, and explained what was happening. She came back and told me, “When I told ___ what was happening, she said 'that's weird'. I've never heard her say 'weird' before”. I told the nurse it's very fitting that my neurologist used that word in connection with me.

The nurse gave me a steroid infusion and a couple of Benadryls. After a bit, my reaction started subsiding. She made me call for a ride home because of taking the Benadryls.

I made an appointment to see my neurologist. When she walked in the exam room, she just laughed. She's really getting to know me. After she stopped laughing, she said, “Now what are we gonna do”?

We talked about my (limited) options, and we decided to try Aubagio**. Aubagio is a once-daily oral medication that doesn't need to be taken with food. There are some risks (of course), but we're doing blood work once a month to watch for those things. So far, I don't seem to have any adverse reactions to it, and I'm nearing the end of my second month on my little blue pill. No, not that little blue pill! 

I would have loved to try Ocrevus***. Ocrevus is an infusion given twice a year after the initial dose. But my neurologist told me that it might be linked to breast cancer. Since it's relatively new, we decided that I shouldn't risk it. Perhaps if new data comes along, we'll revisit it, but for now I'm happy on the Aubagio.

Through all this, how are my symptoms? I'm still walking, so there's a major plus. I don't feel much worse than I did last year. Struggling to breathe through a messed-up nose really pushes other things to the back burner!

*Tysabri is a disease-modifying drug developed specifically for MS. It's given once a month as an infusion. It's also linked to PML. Here's a link about Tysabri and PML if you want to read more.

**Aubagio is an oral medication developed specifically for MS. Here's a link about Aubagio if you'd like to read more.

***Ocrevus seemed like the perfect drug for me. An infusion twice a year? Amazing! If you'd like to read about Ocrevus, here's a link.

Happy Mother's Day

Another Mother's Day is here. Another one without my mom, my first one without my sister and mom. Nothing can prepare you. Oh, sure, intellectually, I knew this day would come, but the feeling is stifling.

I don't know if you've ever seen the movie “Death Becomes Her” with Goldie Hawn, Meryl Streep, and Bruce Willis, but there's a scene in the movie that perfectly shows how I feel right now. It's actually a really funny movie if you ever see it on cable. Anyway, it's really accurate.

I've written about my mom before, and I've written about my sister before. Being without both of them is pain beyond words. All I want for Mother's Day this year is to crawl into a cave, tighten into a fetal position, and be in the dark. Then my environment would match my mood.

However, I have two wonderful kids who love me and I need to be present for them. It's funny, I never thought I would make Mother's Day about my kids, but if it weren't for my kids, I wouldn't have a reason* to notice Mother's Day this year.

If you're celebrating this year, Happy Mother's Day. Hope it's more than you dreamed of!

*It's not my intention to slight all the great moms I know or the dads who are dads and moms. It's not that you're not important; you are. I'm just empty this year. 

A Picture Is Worth 624 Words

My parents were married in 1948. There were places they wanted to go, but my dad just wasn't able to travel. After my dad passed, my mom took a few trips. On what would have been my parents' 50^th anniversary, my sister and brother-in-law decided to take my mom to Cape Cod. My mom had always wanted to go, and this seemed like the perfect time.

My mom was really looking forward to going. She was finally going to be able to see and do all things my sister and I had talked about. Take the ferry to Martha's Vineyard and explore Martha's Vineyard, see the Dunes, go to The Christmas Tree Store, and get her feet in an ocean other than the Pacific.

What my husband and I didn't tell anyone was that we planned to surprise them in Cape Cod that weekend.

We flew into Boston from Chicago, spent the day in Boston seeing the sights with a friend, picked up the rental car, and drove to the Cape.

Only it didn't quite go that smoothly. It rarely does. We went to the rental place to get the car. I had reserved a Mustang; I figured it would be cool driving around the Cape in a 'Stang. The rental place tried to give me Contour*. I don't know if you remember the Contour, but it was like a poor relative of a Taurus. At first, the company wouldn't budge and tried to force me to take the Contour. I stood my ground. They offered me a size upgrade, but I didn't want to learn how to drive an SUV on the road to Cape Cod. In the dark. Finally, an available Mustang appeared. As soon as we get in, we notice it's dirty, as though it's being driven by someone as their everyday car.

Still, we're finally on our way in a Mustang! So we're driving down the very dark highway, and it seems darker than it should be. I don't know what route it is from Boston to Cape Cod, and I don't know if it's still completely unlit, but it was wooded and pitch black driving in 1998. Once I stop behind a car, I discover why it seems so dark. There is a headlight out in the rental.

My husband and I finally make it to the Cape, surprise everyone, and head back to our hotel. In the morning, I call the car rental company. They were nice enough to offer to let me take their car to a dealership and have the headlight replaced. And oh, by the way, they would reimburse me for the headlight. You want me to have YOUR car repaired AND pay for it? On my vacation? WHAT?! No. Next, they offer to let me drive back to Boston to exchange the car. Thanks for playing, but guess again. They finally say that they will drive a car down from Boston for me. They will meet me at Hyannis airport with an upgrade. That works for me because we were going to Hyannis anyway.

They show up with an SUV.

At this point, I don't even care, and at least it's daytime. I just make sure all the lights work, the radio works, and it's clean. I drive around the parking lot to get my bearings, and I'm finally comfortable enough to drive in Massachusetts. If you've ever driven in Massachusetts, you know what I mean.

Anyway, I told this story because it popped into my head when I saw this picture. The photo was taken on the 1998 Cape Cod trip and I love it.

*My apologies if you owned a Contour, but we both know that they were nothing like a Mustang. 

Happy Birthday Lee!!

Today is my husband's birthday. Every year, I ask him what he would like for his birthday, and every year, he requests the same thing. “Nothing”. I have such a hard time giving “nothing” to the man who gives us his everything.

He is kind, generous, helpful, resourceful, devoted, and loving.

No task is beneath him, no task is too difficult for him to attempt.

When anyone needs a helping hand, he's always there, tools at the ready.

On weekends, 99% of the time, you will find him at the ice rink with our son for hockey. He has never missed our daughter's dance recital, and she started dancing in 2007. He is a doting father, and there's nothing he wouldn't do for our kids.

We've been together for 27 years and married for 23+ of them. I wouldn't trade a minute or change a second. Nobody's perfect, but he's perfect for me.

If you're reading this, I love you, Lee. If Lee's not reading this, I love my husband.

Happy birthday.

PS- When looking for a photo to go with this post, I found the one I'm using, but it reminded me of when Lee and I first met. Lee's brother and his wife used to live down the street from Lee, and sometimes we'd go over to their house to play Scrabble. I don't want to say it was competitive, but there was a Scrabble Championship belt, similar in construction to a wrestling championship belt. This belt was infinitely more prestigious, though.

Dr, Touchy-Feely and the Deviated Septum

A long time ago (back in the 1990s), in a city far, far (about 600 miles west of where I am now) away, my PCP wanted me to deal with my sinus problems once and for all. Ever since I was a teen, I called myself “Our Lady of Perpetual Sinus” because I was constantly congested. My PCP referred me to an ENT who my husband and I called Dr. Touchy-Feely.

Dr. Touchy-Feely didn't touch me in a predatory way, he just made it a habit of touching you when he talked to you. He would touch your arm, a “safe” part of your leg, he would touch a shoulder, but in a way that I suppose was meant to show his sincerity, emphasis, and self-assurance. He did it to me, and he did it to my husband. He was an equal opportunity toucher.

During my first visit to Dr. Touchy-Feely, he looked at my CT scan and told me I needed surgery. I had teeny-tiny sinuses*, and a deviated septum. One side of my nose was nearly closed off because of the deviation in my septum. Though he wanted to do surgery, I asked him to try non-surgical options first. He did. For almost two years. One visit he said, “LouAnn, really. It's time”. He meant it was time to do the surgery that deep down I always knew I needed. I was only prolonging the inevitable.

Once I agreed to the surgery, He casually mentioned that he could perform any cosmetic procedure because he was already fixing my septum and insurance would cover essentially anything done to my nose. Though I had a very large nose with a bump in it, it was me. I didn't want to become unrecognizable because of a medical procedure. I did consent to him straightening my nose and shortening the tip of my nose. I specifically told him that I didn't want the nose of an iconic fashion doll. It's a lovely nose, it's just a nose that wasn't meant for my face.

We went over the risks, the downtime, what he would do during the procedure, and what I should expect. I know he said, “You can expect some swelling and some discoloration”. In my head, I didn't think I was going to look like I went through the windshield of a car. You can imagine my surprise when I looked in the mirror.

In the post-op consultation before my release, Dr. Touchy-Feely told me that I bled more than he expected, and the discoloration was due to the blood settling. Oh. Great.

Once I looked less scary, I felt a lot better. My sinuses didn't bother me at all. For a while. I'm not sure how long I was actually better, but last summer, I really started noticing lots of problems. The first problem is that I was having a hard time breathing. I've been on several different antibiotics and a few courses or steroids with little or no relief.

I finally mentioned it to my neurologist (only because I saw her before my PCP) and she referred me to an ENT locally. I told my husband that if this ENT mentions surgery, I'm not going to prolong the torture.

I had my consultation with the new ENT this past Thursday. He looked at my MRI and asked if I had injuries to my face. I told him that I don't make a habit of fighting and I hadn't face-planted, so I didn't recall any injuries.

My septum is deviated again, almost closing my nose on one side again, and the inside of my nose is corkscrewed. He also mentioned something about the sides of my nose, but I don't remember exactly what it was. Basically, all this translates to surgery for LouAnn. Again.

He did say something very interesting. He said whoever did the original procedure didn't do it properly. He pointed out all the reasons why it was, for lack of a better word, botched. What's interesting about Dr. Touchy-Feely is that he was a fellow in Otolaryngology and he's still ranked as one of the best ENT's in the nation.

I haven't been scheduled for surgery yet, but I'll keep you updated.

*not a medical term