Tag Archives: multiple sclerosis

Hungry Years

Today I am bringing back an old entry, written by Bruce. I love his perspective, and recent conversations with some of my very special former students has had me thinking about the time in our life that we can look back upon, knowing that we were living in our “hungry years”, but also that we were blissfully unaware of how different things would be (for the better) once we established ourselves. Please enjoy this very special entry written by my favorite guest blogger.


Recently, I was listening to an interview with an older male actor (exactly who he is doesn’t much matter to the story here, plus most readers wouldn’t even know who the hell he is anyway), and in it he referred to his “hungry years”. By this he meant the early years of his marriage, when his career had not yet taken off, and so times were lean for him and his wife. When asked if he looked upon this time negatively he responded that they were actually some of the best times of his life, as he was still so young and naive, and didn’t fully grasp the struggles he was enduring. This made me think about our own “hungry years” in the early years of our relationship, and when I mentioned it to Rennie she felt it might be an interesting topic for the blog. The catch was that since I was the one that brought it up, I’d have to write it. So here it goes…

In the summer of 1998, after dragging my feet for the first three and a half years of our relationship (not to mention the fact that we had been such close friends for over seven years), Ren and I finally moved into our very own apartment. It was a beautiful place in a brand new development in North Brunswick, one town over from Rutgers University (where we’d met), and while it might have appeared to those that saw it that we had it all together, it wasn’t really the truth. Like most couples in their 20s, we were still finding our place in the world. Both of our careers were still in their infancies, and while Ren had spent the early years of our relationship working a high-paying retail job, that lifestyle just could not be sustained. The stress it was putting on her mind and her body, as well as our relationship, was too much to bear. A few short months before we moved into our new place she’d made the move out of retail, but there was a price to be paid for the more humane lifestyle…a huge pay cut. At the same time, I was working at my first “real” job out of college, and was finding it hard to figure out what I wanted to be when I grew up. So while we weren’t anywhere near the poverty level, we certainly weren’t living in the lap of luxury either. But we had each other, and considering everything that had to happen just for us to end up together in the first place, I often felt like I was living in a dream that someone would be waking me up from at any moment. I had zero complaints.

This one is from the "really hungry years", before we even lived together.

This one is from the “really hungry years”, before we even lived together.

With no money to do anything all-that-exciting, we quickly stumbled upon what would become our usual weekend routine. On Friday nights, we’d start with dinner at whatever “gourmet” chain restaurant we had a coupon for that week (Applebee’s, Chili’s, Bennigan’s, etc.), and then follow that up with a leisurely stroll through Target, where we hoped we could cobble enough cash together to buy the things we actually needed for the new palatial Rankin/Leighton estate. Once done, we’d come home and watch the ever so thrilling “Sabrina, the Teenage Witch” and whatever else we could find on the basic cable package we were lucky enough to be able to afford. Saturdays and Sundays were much the same, but since we’d already splurged on one meal out, Ren would cook…and often with food we’d lifted from my parents’ pantry the last time we’d visited them. Crazy stuff.

The spacious kitchen from our first place. It was bigger than some of the places Ren lived in by herself before we moved in together.

The spacious kitchen from our first place. It was bigger than some of the places Ren lived in by herself before we moved in together.

There’s one memory from this period that is still so vivid to me that I almost feel as if I’m traveling back in time when I think of it. It was a Saturday night in December 1999, and we’d recently booked our wedding in Las Vegas for the following April. Christmas and Hanukkah decorations lit up our apartment, and we were spending our weekend the way we’ve always loved to…talking, laughing, and enjoying each other’s company and the life we’d built (or were building). As the evening got later, we both drifted off to sleep in our living room, with Ren on the couch and me in the recliner. Sometime after midnight I awoke to the sounds of Beck performing his song “Mixed Bizness” on Saturday Night Live, and I looked over to see Ren peacefully asleep. I then slowly panned around the apartment that was so unmistakably “us”, smiled and then marveled at how perfect everything was in that one moment. A moment that could have easily been innocuous and forgettable ended up perfectly capturing that exact time in our life.

Our very first Christmas tree in our very own apartment. Together.

Our very first Christmas tree in our very own apartment. Together.

The most beautiful thing about those hungry years was that we were so young and that simply placing down our roots together, on our own (except the usual raiding of my mom’s pantry) felt truly blissful. Now with hindsight being 20/20, we can look back on the years of living paycheck to paycheck and understand how much we struggled and how we always made do with what we had…because we had each other. We now recognize that even though we were struggling then, there was no preparing us for the real battle that had not yet presented itself to us: life together with Multiple Sclerosis.  

Taken on Ren's 29th birthday, just shy of two years before her MS symptoms first presented.

Taken on Ren’s 29th birthday, just shy of two years before her MS symptoms first presented.

Now, with over two decades together to look back upon, it’s easy to recognize the times that weren’t so easy…even if at the time they seemed oh-so-normal. But as with many things in our life, there’s the time before MS, and the time after MS. That line of demarcation provides all the perspective we’ll ever need to realize that even though we had good times, and we had bad times…we had times. Times together, which is all that really matters, even if you’re hungry.

This summer we ventured back to the very spot that I first saw Ren walking across campus. We'd just graduated high school, and were attending summer orientation before starting our freshman year at Rutgers.

This summer we ventured back to the very spot that I first saw Ren walking across campus. We’d just graduated high school, and were attending summer orientation before starting our freshman year at Rutgers.

Thankful

Having just celebrated Thanksgiving, I am feeling a need to talk about gratitude. Most people don’t think enough about how many blessings they have in their lives because they focus too much on the daily humdrum of life. It is much easier to focus on negativity when it sometimes does take more effort to open your eyes to all the beautiful things that are right in front of you. I live my life, acknowledging my gratitude twice daily: morning and night (through journaling), making a conscious decision to do so. In honor of this month of gratitude, here are 30 (thirty!) things for which I am grateful, and believe me, I could list about a gazillion more than what’s here:

(Aside from the first one, listed in no particular order!)

1. Bruce: my other half, my partner in crime, my best friend, my husband, my fiancée. He never wavers, and he has taught me how to love purely, and with all that I have. No matter what obstacles life throws our way, we conquer them together.

2. A roof over my head, food in my fridge, and love in my heart. These all go together because we had to live in a hotel for 5 months while our home was being built, and I can never take for granted how it feels to be home. We spent plenty of our younger “hungry years” food shopping at my mother-in-law’s pantry, and now we have a well-stocked fridge and pantry, and even when we neglect the food shopping, there is still always enough to make a simple meal. And love because no matter where Bruce and I live, there is always love in my heart.

3. Autumn in NJ. There is nothing more beautiful than the palette of oranges, reds, and golds that naturally decorate our environment, even on years when they say it’s a bad season for foliage. Sometimes I wish I could pull my car over even in the worst of places because the view is that beautiful. The fall also reminds me that I survived another summer and that the coziness of winter is imminent.

4. Every single day when I can put my two feet on the floor and walk unassisted. I work hard to stay strong, and after 14 (+) years with MS, this is something that I am truly grateful for. (Don’t ask me about going up and down steps though!)

5. Yoga. It has taught me to connect my mind, body, and spirit. As much as my lack of balance can make things difficult, I like the challenge, and I never give up. Walk into my house almost any day of the week and you’ll see my mat, evidence that I am constantly practicing.

6. My family (steps and all!). They are spread all over the east coast, but their support is felt from all corners.

7. I feel a special sense of gratitude for my sister, Lorri, and my brother-in-law, Ken. They have been by my side (literally) through all the ups and downs. My sister was there with me the day I found out I had cancer, and both of them were there the day I celebrated the end of my cancer treatment and they witnessed me ringing the gong.

8. My Rankin family. For almost 23 years they have loved and supported me without question. And because I am a Rankin I have been blessed with a little sister and a nephew, both of whom I absolutely adore.

9. My MS family. This motley crew of crazies is essential to my mental health. Although support from family and friends is great, nothing replaces this group who can truly understand the challenges that I face every single day.

10. Living in this day and age where there are treatment options for MS patients to help slow down illness progression, giving us all a better quality of life. While I don’t think I’ll see a cure in my lifetime, as long as they continue to find more treatments for us, my gratitude is infinite.

11. My fur babies, past and present. Rescuing these poor pups that never would have been adopted otherwise has added so much joy to my life, and although it’s heart-breaking to lose them, the happiness they bring on a daily basis is worth it.

12. Diane, my trainer. In addition to working me out, she has become a trusted friend, who I consider family. She plays many roles for me: cheerleader, therapist, trainer, sister, and friend. She has helped me change both my body and my mind, and for that alone I am eternally grateful. She knows what I need when I need it, and words can’t describe how important she is to me.

13. My volunteer job at Marty’s Place Senior Dog Sanctuary. The “residents” are so loving, and I have met so many other like-minded individuals in both the many other volunteers I have met there as well as in the very skeleton crew of paid employees. They never waste an opportunity to thank the volunteers and to let us know how important we are in the daily upkeep of this extremely special place.

14. Having taken my cancer diagnosis and used it to build more inner strength.  Today I can look back at the beginning of my journey (starting just about one year ago), knowing that I faced it head on, with a smile on my face…and kicked ass.

15. Being proactive in my medical care, knowing how to use the tools at my disposal and sift out the fluff to understand the meat. I’m not afraid to advocate for myself, and I can do it without getting angry.

16. Having learned to listen to my body, and to understand what it needs and when it needs it. I know when I am over-tired and need rest, and I know when I can push through. I know when I have a gut feeling, I need to listen to it, and I’m grateful that I have learned this lesson.

17. My former students, near and far, who continue to play such an important role in my life. They help me to see the good in others as I watch them blossom as adults, doing amazing things. They make me happy just thinking about how far they have come, and they fill my heart up with endless amounts of pride.

18. Meditation, specifically Transcendental Meditation (TM). Through the process of learning TM, I am generally a more self-aware, calmer version of the person I used to be. TM allows me to settle my mind and give myself those 20 precious minutes of clarity.

19. Air conditioning. It sounds trivial, but when you suffer from heat intolerance due to MS (and you lose your vision when overheated), it takes on new meaning… especially when you live in NJ where the summer months bring what feels like never-ending heat and oppressive humidity. Also, the curly girl in me appreciates the AC as well, but for completely different reasons!

20. On-line shopping. Being that crowds make me anxious (mostly because I can’t feel my feet which throws my balance off), being able to still do my holiday shopping on my own, without fear of walking into people (or things) and embarrassing myself, helps me maintain my independence.

21. Social media. How else could I have reconnected and stayed in contact with so many amazing people from so many different aspects of my life? (Pssst: if you don’t see me on Facebook, it simply means that things got too political for me and I took a little break, but you will always see me on Instagram!)

22. Photography. This little hobby of mine has given me friendships with some pretty spectacular people. I never knew I could feel such a strong connection with friends simply because of a shared passion!

23. My forever friend, MHP, for always ALWAYS loving me. We don’t live ten minutes from each other like when we were younger, but it doesn’t matter. She is forever in my heart and no matter how long we go in between visits, it’s always like no time has passed at all.

24. My “brother from another mother”, BH, for coming back into my life at a time when we both needed a specific kind of friend to suit a specific purpose. He has seen me through so much and I am so thankful for his kindness and support. Not a day goes by without a text or a phone call, which in itself is hugely comforting to know that he has my back always.

25. Netflix, Hulu, Amazon Prime, and On-Demand. Being able to watch anything we want so quickly, without having to go out to the movies is the best. Aside from the germaphobe in me who gets grossed out by sitting in chairs that who knows what kind of person sat in last, the MS patient in me appreciates not having to choose the right moment to go to the bathroom without fear of tripping in the dark. At home I can press “pause” as many times as I need to!

26. Having chosen a profession and worked long enough to earn disability retirement so that I could collect my pension early, allowing me to take care of myself and my illness, and still contribute to the household bills.

27. The families of former students who have brought me into the loving fold of their own families because of the relationships we established so many years ago. It’s hugely validating to me, not just as a former teacher, but also as a human being. All I did was love their kids and help them to succeed, but that’s all I had to do, apparently. I’m so thankful to feel so loved.

28. Coffee. And certain medications. When chronic fatigue rules your life, you must give thanks for anything that helps you push through the day, whether prescribed by a doctor or otherwise.

29. Texting. Sometimes I just don’t have it in me to have a full conversation over the phone, and texting allows me to check in with (or be checked in on by) friends and family, with less effort expended. It’s not that I don’t want to talk to loved ones, but sometimes, I simply do not have enough energy.

30. I am grateful for this life I’m living. It’s not perfect, nor is it what I envisioned for me and Bru, but it’s the only life I have been given. Despite the obvious, our life is perfectly imperfect, and overcoming so much together only makes it that much sweeter.

So there you have it. With very little thought, I have listed a whole month’s worth of people and/or things for which I am eternally grateful. I’m not saying that you need to physically acknowledge your gratitude twice daily like I do, but I am saying that if you start and end your day with gratitude, there’s no way that you will be able to fixate on any negativity that arises during the day. We all deal with stress in our lives, and I have found the best way to counteract stress and negativity is by focusing on gratitude. I dare you to try it. You’ll be amazed at how differently you view your world. So tell me… What are you thankful for?

PS. I took a little tumble and dislocated my finger the night before posting this blog, so I am adding the fact that I’m grateful that my finger isn’t broken, and should heal up much more quickly than if it were broken. I’m also grateful that I didn’t dislocate a body part more important than a pointer finger.

Patient Advocacy

I’m not your typical patient. Not by any stretch. I value the recommendations of my health care team but I do not blindly listen and follow orders like a good soldier. I am an educated woman, with a masters degree in Library Science, which basically means research is my thing. Although anecdotal research serves a purpose, I like to dig deeper using educated research where I can compare data. I also understand statistics and how easily they can be manipulated to suit the needs of any study. Although I have been met with my share of resistance, ultimately I think my medical team understands that this is just who I am, and although they aren’t always pleased with this kind of patient, they respect it.

The last two weeks it feels that all I’ve done is defend myself and my choices, particularly where it comes to my treatment plan for MS. Did you ever have a really bad gut instinct about something without being able to explain why? Well I have. Generally I listen to my body because I am very in-tuned with it, and the last time I didn’t, I ended up crashing my car. Well I was having that same feeling about the treatment my MS specialist and I had discussed at my last visit and it had me very upset. I felt torn. I have always been on the same page as my neuro, and for 14 years I have trusted him implicitly. I still do. But I felt there were other, perhaps less orthodox treatments, that were not being discussed. And on top of everything else, I was informed that I have a thyroid nodule (which is most likely nothing), but no cancer patient ever wants to hear the word nodule no matter how innocuous it might seem to others.

It’s not that I panicked exactly, I just wanted to know more about this nodule as soon as humanly possible, and I couldn’t get anyone to listen to me. So I did what I know how to do. I did my own work, and managed to get an appointment with an endocrinologist (who is highly recommended) at the end of November when they are actually booking in late January.

I made an appointment with my MS specialist to discuss the other treatment options, because with a ginormous patient load, it’s the only way I could get some time that would specifically be mine. I made an appointment for the end of December, but as luck would have it, there was a cancellation so I was able to get in this past week. In the interim I had already called other specialized MS comprehensive care clinics in preparation for a second opinion of a new treatment plan, and shared that information freely with my MS specialist of 14 years. I simply let it be known that if there wasn’t further discussion about my options then I was prepared to do what I needed to do to get what I feel is the right path for me. I was not met with anger or resistance, but rather, what appeared to be respect. Because I made it clear what I wanted and needed… but I did it in a way that was not confrontational or angry, but simply by stating the facts as I knew them. I used 13 of my 20 minutes that is allotted for each appointment, and I left with a great sense of relief and accomplishment.

Being your own advocate, not just as a medical patient, but in any circumstance at all in life where there is someone in a perceived position of power over you, is a lesson that is hard to learn but invaluable in effect. It’s a lesson I tried to teach my students when I was working because being able to discuss what you need without getting angry or confrontational, is very empowering, and let’s face it… no one is going to advocate for you. You are your own best (and likely only) advocate.

Life will always throw curve balls our way, and the way we face them is up to us. I am the kind of person who sees that curve ball, and I don’t just stand there without attempting to smack it out of the ball park. Many moons ago, my softball coach told us that when you have two strikes against you, it’s always better to go down swinging rather than just standing there looking at the ball. It’s advice I have carried with me for the last 30 years or so, and I have applied it to practically every aspect of my life. This week I feel like I hit a home run for Team Rankin. And, like I’ve said before, we never lose.

(Shout out to my softball coach, Jean Hildebrandt, for giving me this advice that i have carried close to my heart throughout the years.)

No words necessary!

 

Do-over

Last week, I wrote about our plans to have a wedding since we never had one. This week, I proudly present an entry written by my one and only, Bruce, relating to the same topic. I know his posts are very popular, and I am sure you will all love this one as much as I do.

Over the years, I’ve been asked a lot how exactly I’m able to handle everything that comes with Ren’s MS. Now as we’ve moved into middle-age, and breast cancer has been added to her plate, the frequency in which I hear this from someone has increased almost exponentially. Usually, my response revolves around how I just keep my head up and continue moving forward, but that doesn’t begin to adequately explain what it is to be a care partner and to struggle through everything that Ren has to put up with from day to day. And as I’ve written here before, our relationship is such that whatever one of us goes through, we go through together. So while I’m not personally suffering with the debilitating nature of MS, or struggling through radiation treatments, I’m as close to it as anyone possibly can be. As a result of all that we’ve gone through, our relationship has strengthened and brought us to a place I didn’t think was possible. It’s a place (as Ren mentioned in her entry last week), that most couples just don’t find themselves in. Thankfully, that is not us at all.

When considering exactly what it is that keeps me going through it all, it ultimately comes down to one thing: I love Ren. I don’t just love her, but I’m in love with her. And I pretty much have been in love with her since we met as 18 year olds at Rutgers University…I just was too young and stupid to completely grasp it at the time. What started as a simple crush grew and grew into this overwhelming need to have her in my life all the time, and after several years I was lucky enough to finally have that happen. Of course, as the saying goes, you have to be careful what you wish for, because once you have it it’s not always what you thought it would be. Don’t get me wrong, because Ren has always made me incredibly happy, but once we were together I had a very hard time dealing with it. In our early years, I often would put her second (or third or fourth) behind my friends, and certainly could be accused of taking her for granted. Being such good friends with her before we became romantically involved made things easier for us than most new couples, but for me they might have made them too easy as I ended up treating her too much like my buddy Rennie instead of my girlfriend Rennie. Add to this my tendency to reject romance completely (Ren once stated that a rock on the ground was more romantic than I was), and think of marriage as an unnecessary business arrangement, and you can see how there were many times when Ren didn’t always believe that I was as devoted to our relationship as I insisted (and knew) I was. And as our friends started to get engaged and married, my resolve to ever be the contrarian got stronger and stronger. Basically, I was a jerk.

When Ren and I finally did decide to get married, as she’s described here, we went with a very low-key approach. This was done for several reasons (more than one of which was my reluctance to look like a hopeless romantic in front of my family and friends), but the most important of those reasons was that we just didn’t have the money for a big wedding, and neither of us thought it responsible behavior to go into mounds of debt for one day…even if it was our wedding day. I know at the time Ren would have liked a “real” wedding, but as she has often said, she’d marry me with a piece of string tied around her finger. In the end, she was just happy that I was finally committing to her in the way that she’d always dreamed I would.

This is our actual wedding picture. Nothing conventional about it.

The first couple of years of our marriage were rocky, and there were doubts at times about how long it might last, but we were finally coming out of the woods as we approached our third anniversary. Then Ren was diagnosed with MS, and our world was turned upside down. Suddenly, our issues (which in retrospect were stupid little things) meant nothing, and it was all about getting a handle on things and ensuring that she was receiving the best care she could. And as I wrote about here on the blog, my attitude suddenly began to change. Even though it might not look that way, I’d always been devoted to Ren, but a metamorphosis was starting. Slowly, my attitude began to change. I no longer took her for granted, and I found myself wanting to be more romantic and spend more time with her, and just her. I also found myself thinking about finally giving her what I should have given her years before: a real engagement. It was an idea that gestated for the better part of ten years, and which did result in a renewal of our vows for our tenth wedding anniversary in 2010. But I knew that wasn’t enough. I had to do more.

At the renewal of our vows, celebrated with about 40 people at our favorite spot in New Brunswick.

Eventually, as my career began to pick up steam, and I was finally earning a substantial enough salary (or so I thought) to be able to give Ren what she deserved, I set the plan in motion. In the fall of 2015, I realized it was time to move ahead with things, and began looking at engagement rings. Yes, we’d been engaged before, but not in any true sense, as we’d mutually agreed it was time to get hitched. There was no dropping to one knee, and certainly no romance. Young Bruce simply would not have that. I badly wanted to right that wrong, so I went out and bought an actual engagement ring, and on the campus we’d met on so many years ago, I retroactively popped the question. Thankfully, she said yes (phew!).

Taken probably 3 minutes after the proposal!

On what was one of the happiest days of her life, I finally realized how important it was to have done this for Ren. She was ecstatic. And with everything we’d been through over the years, it was inspiring to see. For that one night, Ren finally felt like the princess she should have always been, or at least like the princess I should have made her feel like when we were younger. After all, she’s simply been the most important person in my life for more than half of it…a life that she completely changed by just being a part of it.

In the months following my “retroactive proposal”, our relationship went through a RENnassaince (pun completely intended), and we realized that we were even more in love than we’d ever been. During this time the idea of actually having a real wedding on our 20th wedding anniversary came up, and when I looked ahead at the calendar and saw that it fell on a Friday I just knew we had to do it. So this past summer we booked a venue, and have started to look into all of the other details needed to plan the big day. And now we can afford to do it exactly the way we want to, and we’re old and wise enough to know exactly what we want.

But in the end, this whole thing is really about Rennie. She’s the most incredible person I’ve ever known for so many reasons, even though I too often spent some time early in our relationship taking her for granted. While I still beat myself up for my behavior back then, I know that it was short-lived, and that I’ve spent much more of our time together appreciating her for the person that she is. And I get better at it all the time. Regardless of what obstacles MS or cancer puts in our path, I know that not many guys get to date their crush, much less marry them. And on April 17th, 2020, I’ll get to marry her all over again.

Wedding

So Bruce and I are not the kind of people who live our lives according to other people’s standards. Most people would consider our marriage somewhat unconventional (not in any gross ways 😜  ), but to us, we have always just done what works for us. In the late 1990’s and early 2000’s, all of our friends had extravagant proposals followed by equally as lavish weddings. But not us… we opted for a trip to Vegas (just the two of us), a webcast (very cutting edge in the year 2000), and a casual celebration after the fact. And you know what? I wouldn’t have changed a single thing.

As the years passed, I still didn’t have any regrets. Our friends started having babies, and we chose not to. At the time when babies were being made, we were dealing with the addition of MS to our family and that was enough. And even though we took some heat all around for not making babies, you know what? I still wouldn’t have changed a single thing.

Random date night picture…

As we began approaching what most refer to as “mid-life”, we were falling deeper and deeper in love with each other, while many of our friends began divorcing, cheating, or both. Then, on a random Saturday “date night” in March of 2016, Bruce and I went to one of our favorite places in New Brunswick, where he got down on one knee and actually proposed to me (retroactively). It was, by far, the most romantic night of my life. We didn’t know at the time what the proposal meant for us, except that Bruce wanted to give me what everyone else got in our 20’s, and even though I never had regrets or doubts, on some level I always wanted him to declare his love for me in a personal way like all my girlfriends had experienced from their guys years before. Still, I wouldn’t have changed a single thing.

Here I am on the night of my proposal, walking on cloud 9 and admiring the beautiful engagement ring that Bru placed on my finger.

For a few weeks, we rode the high, feeling like a newly engaged couple despite having been together for over 20 years already… full of excitement and butterflies, the way it should be. But better. Because in my mind I knew that this guy of mine wanted to be married to me more than ever, even after so many curve balls that life had thrown our way. We talked a lot about how to acknowledge our “engagement” and what we discovered is that we wanted a wedding. And you know what? I wouldn’t change a single thing!

I still cant believe he orchestrated such a perfect proposal that I could never forget.

There is something very different about declaring your love publicly when you are just starting out your life together,  than doing the same as established adults. For one thing, we can do everything the way we want to because we are in a different financial position than we were in our 20’s. We know what we want, what we like, and if anyone disagrees with us, we don’t care! So, months ago, we booked a venue that is very representative  of who we are, and on our exact 20th wedding anniversary, we will finally have a wedding to celebrate our amazing life together with our family and friends. And I wouldn’t change a single thing.

Bruce has a countdown until our wedding day on his phone, and every once in a while he sends me a screen shot so I know how many days are left.

Suddenly I find myself watching bride shows like “Say Yes to the Dress” and “Four Weddings”. I spend time on Pinterest browsing wedding dresses, wedding hairstyles, wedding invitations, and anything else wedding related. It’s not like I can do too much because this isn’t happening until 2020! I even have a wedding planner/consultant (shout out to Dani!❤️  ), who is amazing at details and she keeps telling me we have to get to work. What do I know about this stuff? Nothing! Which is exactly why I need her, and I wouldn’t change a single thing!

This is what I know. I know that although we aren’t doing this in the “right” order, it is exactly the right order for us. I know that I want Bruce to see me in a wedding dress and be waiting for me at the end of the aisle. I want to declare my everlasting love for the guy I can’t live without in front of everyone. I know that I want to celebrate our love with those we hold dear. And although having a wedding after 20 years of marriage isn’t the way people normally do things, I know, without any doubts whatsoever, that I wouldn’t change a single thing.

We should all be so lucky to fall deeper in love as the years pass, rather than grow apart as often is the case. Bruce and I are proud of the strength of our relationship, and even though we have had many obstacles to overcome, we have weathered the storms together, and I wouldn’t change a single thing.

Rainbow Bridge

This week, Bruce and I said goodbye to a beloved member of our family. We knew his days were numbered, yet we still were not fully prepared for how quickly he seemed to decline. In the end, we let him go peacefully in the loving arms of the best mama he ever had in his traumatic little life. We are sad and broken, but we will heal, comforted by how far he came in his 5 years with us. In honor of our Marty, I am bringing back two entries that I wrote about my spirit animal, read with tears in my eyes but a smile on my face because that little boy will always hold an extremely special place in my heart. Marty is on to the rainbow bridge, and his suffering is over. May you all experience the love and joy that a rescue pet can bring into your life… and remember please, please, please #adoptdontshop!


Marty

I have written about how therapeutic pets can be (click here), but today I’d like to write about one pet in particular. Before I continue, I feel the need to state that I love all my pets (past and present) equally, and with every fiber of my being. Even if I did love one of them more (and I’m not saying that I do!), I would never verbalize it! 

He even plays with toys sometimes, now that he is feeling well!

He even plays with toys sometimes, now that he is feeling well!

When I first saw my Marty on Petfinder, I felt drawn to his picture, and I stopped looking. This is how I had found Mookie (Marty’s now deceased older adopted brother), and I had the same exact feeling back then. I stopped looking because I knew that I had found the one. 

When I first met Marty in person, I was horrified listening as his foster mom told me the traumatic events that brought Marty to NJ. He was rescued from a high kill shelter in Texas, where he was due to be euthanized because he was just another chihuahua with heartworm. He was saved, and endured the painful, grueling process of being treated for heartworm. I’ll also add that he is an albino chihuahua with many sensitivities, just like humans with albinism. He has sensitive skin, bad allergies, and certain sounds or music affect his ears so badly that he howls. That howl of his is what caused him to be “un-adopted” twice before he found me. My husband and I are well-versed in special-needs dogs since Mookie was abused and abandoned with many traumatic memories, and he also suffered from seizure disorder. To paraphrase Bruce’s feeling on the matter, why would we adopt the ones that everyone else wants when we know we should take the ones who won’t find a home?

So Marty joined the family on July 6, 2012. I can honestly say that it took a really long time for me to connect with him. He was not an easy dog to love. He was an incredibly low-energy, temperamental dog. If we touched him in the wrong place, he snapped. If we played the wrong music (Radiohead, for example), he snapped. If we tried to clip his toenails, he snapped. If we moved him or picked him up before he was ready, he snapped. 

He is not exactly a handsome fellow, but he makes up for it in personality!

He is not exactly a handsome fellow, but he makes up for it in personality!

I wanted to love Marty and make up for all the bad years and experiences he had endured before he found us, but he made it difficult at times. A few months after he came, we said goodbye to Mookie, and Marty became an only child. Little by little, he softened up some, and some days I think I actually did love him. Certainly I couldn’t imagine my life without him, anyway. 

This was when I started to feel the love for my little boy!

This was when I started to feel the love for my little boy!

We have since added Scarlet, rescued about a year after Marty, to our little family. She is just about the sweetest, happiest little girl ever. She is definitely easy to love, and I’ve loved her since the very first time I met her. You always know what you’re getting with Scarlet, which is pure love. With Marty, not so much. 

This is Scarlet. She isn't baring her teeth here. She is one of those dogs who smiles! How could I not love her?!

This is Scarlet. She isn’t baring her teeth here. She is one of those dogs who smiles! How could I not love her?!

But about a year ago (when Marty was with us for two years and a scarlet was with us for one), Marty began having even more medical issues. After spending a small fortune at U Penn Vets, we discovered that he has a collapsing trachea, and it is probably 65% collapsed at the moment. They told us that the best thing we could do is have him lose some weight, and they put him on a combination of medications to help manage his symptoms. I finally started understanding why Marty acted the way he did. He didn’t feel well. I don’t act nice when I don’t feel well either! 

Siblings.

Siblings.

Then just a few months ago, we had yet another medical crisis. Seemingly out of the blue, his stomach was bloated, and he was lethargic. When he refused the peanut butter (that conveniently hides his medications), I knew something was up. He was admitted to the hospital for four very long nights, and he diagnosed with Diabetic Ketoacidosis. It took weeks to regulate his insulin, and slowly he started to recover. There were setbacks along the way, including a condition that requires us to put ointment in his eyes, as well as a recent tooth root infection. But he is a trooper and he keeps bouncing back. My sister even commented that he’s like a cat with nine lives!

Marty's preferred location is on top of me, whether it's on my lap (shown here), my chest, or tucked under my arm.

Marty’s preferred location is on top of me, whether it’s on my lap (shown here), my chest, or tucked under my arm.

I think now I see Marty in a whole new light. He, like me, enjoys the simple things in life: a full belly, peace and quiet, and a warm place to snuggle with his family. Even though I look ok, simple things are harder for me than they are for healthy people, and I see that with Marty, too. Both of us live a life that is incredibly happy, but also unpredictable. We both take two steps forward, and one step back. He has been attached to me like never before lately, and I think it’s because he knows that I understand him. More and more I feel like he is me in doggy form, or else I’m Marty in human form. Our struggles are so much the same. We both fight with all our strength and determination, and he is my little Warrior dog. 

Spooning against me.

Spooning against me.

Marty has been a part of our family for over three years now. There is a reason I stopped looking at available rescue dogs after I saw his little profile on Petfinder. He was meant to be with us all along because all he needed was the right family to help him thrive. He is happy, and as healthy as he can be (like me) with all of his conditions controlled medicinally, and he is more affectionate, sweeter, and happier than ever. Just like me! 

These kids complete our little family.

These kids complete our little family.

(PS. If you are looking for a furry little addition to your family, please, please, PLEASE consider rescuing an animal from a shelter!)


Marty and Me

I know I have written about my dog Marty in the past, but he is certainly worthy of another entry for so many reasons. He’s definitely my spirit animal in that he’s a true warrior dog. I mean, he was rescued from a high-kill shelter in Texas, with heart-worms, mange, and a host of other conditions. He survived all of that, found his way to NJ, and finally found me. 

I didn’t fall in love with him from day one, but there is no denying that he’s my little boy now. Amazingly, since I’ve had him (coming up on five years), we have been through many health crises together, and he has overcome every single one, most notably a collapsed trachea and the sudden onset of diabetes. 

Poor little tongue is always out now.

Most recently, on the day of my surgery, as we were rushing out of the house at 6 am, we noticed that one whole side of poor Marty’s face was swollen. Great timing! After my surgery, Bruce deposited me on the couch, ran out to get my medications, and brought Marty to the vet. This had happened in the past yet with a new vet in the practice, she was reluctant to give us any medication without seeing him. She actually wanted to admit him but Bruce insisted that this was not a good time. As it turns out, Marty had an abscess and needed an antibiotic, an anti-inflammatory, and some pain management. The swelling went down pretty quickly, but it was obvious he was uncomfortable. The vet suggested we admit him immediately to have a deep cleaning done, but of course we couldn’t do that because we were dealing with human issues. In the interim, we dealt with a lot of crying (on Marty’s part and ours) as well as frustration all around. He can’t tell us what he needs and we did nothing but try everything possible to see what he needed: taking him out, giving him meds, feeding him, moving him to all of his favorite spots to rest… and the list goes on. 

Messy eater with no teeth left!

When he finally had his dental work done, the bone in his jaw was so brittle that the vet caused a hairline fracture, which then led us to a doggie oral surgeon to take on his case. Again, our lives revolved around trying to take care of our baby boy and managing his pain. For a middle-aged couple who made a conscious decision to simplify our lives by not having any children, we were living as if we had a child. Besides taking care of Marty, we also had to make sure that Scarlet was not feeling any less loved, despite the amount of attention that Marty required. Rather than simplifying our life, it was exponentially more complicated, especially when taking into account the fact that I was recovering from surgery myself plus the MS that is a constant presence in our world. 

Sibling love. Or at least tolerance.

But the truth of the matter is that when you rescue animals like we do, particularly the ones who would not be adopted otherwise, it’s a sacrifice you make. I would not give up on my little man like others did before me, even if it temporarily turns my life into something other than what I had anticipated. Happily, he is on the mend and practically back to his old self again, and we remain grateful for the life decisions that led us to create our little family without human children. It’s a choice we made early on for many reasons, and without any regrets. It was (and has been) an exhausting time for us, and I can’t imagine how we would fare if we had taken the alternate path…the one where we follow the masses and the societal norms simply because most people do. 

Sitting right on top of his sister.

The universe clearly drew me to Marty, and there is a reason I felt he was the one to rescue even though I didn’t fall in love with him right away. Our lives are parallel, though, or so it seems. He already had medical issues when we rescued him, and there always seems to be something new to deal with for the poor guy. I, too, had my own medical concerns before he came home with me, and sometimes I feel like I keep having more added to my already well-stocked plate. If it is indeed true that Marty is my spirit animal and he has been given multiple lives in his short little life, then at least I can take comfort in the fact that I have several more to go myself!

He isn’t the prettiest one out there, but there is no denying his connection to me as a fighter.

Lemtrada

On a daily basis, I don’t think much about MS. I mean, I know it is there, but 14 (+) years in, the symptoms are generally manageable but more of a nuisance than anything else. I don’t feel sick because I have been adjusting to my new normals for so long. Usually those norms become a part of who I am: neuropathic, off-balance (read: clumsy), unable to sleep, and tremor-y, just to name a few.

But last week the vertigo hit me from out of nowhere and I spent four days crawling around my house. I needed to take care of things on the homefront, and crawling was a better option for me since I was closer to the ground which meant a shorter distance to fall.

Normally I wouldn’t even think about calling my neurologist because I always think these things are just par for the course living life with MS. And even though I know the rule of thumb is generally that your neuro should be informed of any “new” symptom that lasts more than 24 hours, I seldom listen (insert judgements and “shame on yous” here). I asked my MS sisters if they thought I should call, and they responding with a resounding “DUH”! Ok so they didn’t say duh but they did tell me what I needed to hear.

I saw my doctor emergently just one day later. I have a great relationship with him and have been seeing him almost as long as I have been diagnosed. It will be 14 years in November. So usually my bouts with vertigo have been “positional” which basically means it only happens when I am sitting, standing, or laying down in certain positions. This is NOT MS. But when the vertigo is constantly present, then for sure it involves activity on the brain stem. It also causes utter nausea, and I have been walking around with what feels like vomit at the top of my throat ever since this started. Once we established that MS was indeed the culprit, he looked at me, as serious as I have ever seen him, and said, “Rennie. We need to talk.” I knew what was coming yet held out hope that magically he would have a brilliant solution for me.

Since corticosteroids make me crazy, this is the solution for immediate treatment of the relapse.

What he told me was the following: “Gilenya (the disease modifying therapy (DMT) that I have been taking since clinical trial ) is clearly no longer working for you.” I have seen writing on the wall for a long time now, but I still felt like I had been punched in the gut as the color, I’m sure, drained from my face. I know my situation. I have failed on every single DMT out there. Except two. I am precluded from taking the one I had been waiting for as it progressed through clinical trials, due to my recent battle with breast cancer. That leaves just one more option: the one I have called “the big gun” since before it even came to market in November of 2014.

Gilenya has been good to me and I am very sad to say goodbye.

While Lemtrada (Alemtuzumab) promises great results, it is not without risks. Scary ones. There are pre-medications and post-medications, not to mention monthly blood work for at least 6 years after the first infusion. In simple terms, Lemtrada is an antibody that works by depleting certain white blood cells, partially responsible for immunity. Since MS is thought to be an autoimmune disease where the body mistakenly attacks the brain and central nervous system, the theory is that depleting the culprits allows the body to repopulate with healthy cells that have no memory of their previous programming, thus potentially reducing (or even stopping) MS activity.This means that I will be even more vulnerable to secondary infections and illnesses while my immune system works to re-build itself. The thought of wearing a protective mask and explaining to my two year-old nephew why I can’t hug and love on him the way he’s accustomed to breaks my heart. Plus, if it doesn’t work, there are no more options out there for me, and they still haven’t done research on which, if any existing treatments, would even be safe after taking Lemtrada. That, for me, is the scariest part.

This is just the first bit of literature I have been given, and I know there is plenty more to come.

But if there is one thing I have learned from MS, it’s that I can’t be scared for the future. I need to focus on the present. For me, there is no decision to be made because even though I complement my traditional treatment with alternative ones, not being on treatment is simply not an option for me.

Essential oils and a chakra bracelet help keep me balanced.

As I have done for the past 14 (+) years, I will do what I always do: Pick myself up, put on my big girl panties, and do what I need to do to in order live my best, most productive, and happiest life. After all, isn’t that what everyone aspires to? Plus, I still have plenty of fight left in me, and I am far from done!

Vegas

Every year, my husband takes a guys’ trip to Las Vegas. For 13 years, without fail, this has been a ritual for Bruce and his friends. They aren’t really gamblers, but they love the sports book, so going in October allows them to bet on baseball, football, and hockey. Apparently it’s the manly man’s dream.

Back in the day, the wives/girlfriends took the opportunity for some female bonding time, which is equally as fun but definitely more tame. As the years have moved along, fewer guys make the trip, and the girls no longer have “girl time” because they have had kids, moved, or both.

This year in particular, the time leading up to the trip (just a week and a half before they were due to leave) was marred by the brutal events that left the city, and our country in shock and grief. But not going was not an option because as we all know, life must go on regardless of tragic events, because otherwise we let the perpetrators of such disgusting acts of senseless violence win.

Bruce sent me this picture from the makeshift memorial that has been established at the site of the massacre.

While I am happy that Bru takes his annual guy getaway, I hate everything else about him being gone. I realize how lucky I am that he takes care of so much around the house so I don’t have to. In addition to taking care of a house with entirely too many steps, I have the dogs to worry about as well. Bruce and I are a team and he picks up my slack so frequently that I often take it for granted, which is something I am reminded of every time he goes away.

Now as our dogs are aging, they are much more needy, and they require more care. When Bru is home we make a perfect team with how we care for them, but being alone is a whole different world.  In addition to them needing more care, so do I! This year I had a dizzy day, which I haven’t had in quite some time. I woke up and was stumbling all over the place, tripping over my feet, and I felt like the house was spinning around me. While dealing with that, I had to carry dogs inside and out (about 100 times thanks to Marty), pick up food, put down food, move the food while Marty decided where he would like to dine, and administer the medications all while barely being able to even stand up. Then to top it all off, I had to clean up dog vomit… from the dog who has only puked once before in all the time he has been with us. This gave a whole new meaning to the expression “when it rains it pours”.

Special needs dog does not even describe this guy. The amount of care he requires can be overwhelming to say the least.

Luckily I have an emergency medication that is supposed to help me on days like this. I’m not sure it helped as much as it allowed me to doze, which is extremely uncommon for me. I don’t even sleep at night, and napping is something that never happens for me. Luckily, the dogs did allow me some time to rest, and I woke up the next day feeling less dizzy but just exhausted.

It didn’t perform any miracles, but i think it might have helped just a little bit.

Even though it’s taxing, I still support Bru any time he wants to do the guy thing, and I’m pretty sure he’d say the same about me.  The important thing is that we miss each other like crazy while he is away, and it always feels so good to have him home.  And I get a dose of reality about not taking even the seemingly tiniest things for granted because it’s so blatant while I am alone. I’m reminded of what a great team we are, and if nothing else, I know for sure that home just isn’t home without my partner.

Plus, it sure doesn’t hurt when he wins big and brings me extra presents! 🙂

Enough

Recently I was introduced to a book that changed my life. First I listened to the audio version, which is generally what I do. But I found the book so powerful on so many levels that I actually bought it. Now it’s full of notes and highlights because I have read it over and over, and no matter where I open it to, I find something useful. It’s called “I Heart Me (The Science of Self-Love)” by David Hamilton, PhD.

I am enough!

(Disclaimer: I have nothing to do with the publishing or creation of this book, nor do I receive anything for endorsing it!)

Basically, the book explains that self worth is about biology and is in our genes, yet somehow we lose sight of it as we navigate our way through life. We seek validation from others, but our worth is within us when we reprogram our brains to acknowledge it.  In essence, the book helps us understand ourselves, learning to be truly authentic and happy, with the goal being the ability to say “I am enough” and truly mean it.

The phrase “I am enough” has become part of my daily intentions (or mantra). Every single day when I write my intentions in my journal, I start off with that phrase, even if I didn’t mean it when I first started doing it. But part of reprogramming our brains, according to Dr. Hamilton, includes repetition of this phrase because eventually we become fully aware of it and we believe it.

Thinking about what my blog would be this week, my MS sister (who actually introduced me to this book) suggested talking about all the reasons that make me feel that “I am enough” even though people with chronic illnesses often can’t recognize these things in themselves for a multitude of reasons.

For example, many of us don’t work because we are on permanent disability. For someone who identified herself first and foremost as a teacher, when I stopped working it was hard to see that “I am enough” when the thing that most defined me was no longer a part of my life. But my legacy remains and because I am still surrounded by so many young adults who have been a part of my life since they were just teenagers, they remind me that I am enough.

This guy right here is just one of the many former students who remain constants in my life. #blessed

This book also taught me that I don’t need people to like me in order to be enough. I spent so many years putting other people before myself and I thought that doing more for them meant they would like me more, and therefore I would be validated. The truth is that validation comes from within and while I love doing for others, I don’t need to in order to be enough. Narrowing my circle of friends to those who truly love and appreciate me is so much more empowering, and no matter how much or how little I give them, I know that I am enough.

These friends never make me feel like I am not enough. #mssisters

As a perfectionist, I was never happy unless I achieved perfection.  This happened in all aspects of my life. Reading this book made me see that I need not be perfect in order to be enough. I learned that only I could see what I perceived as inadequacies and faults because I was the only one holding the microscope up to myself. As promised in this book, moving forward with self-love made the perfectionism fade. I’m not saying I have overcome it entirely but I’m a whole lot better than I used to be.

Perhaps one of the most important lessons that Dr. Hamilton taught me in this book is that I don’t have to look a certain way or be a certain size in order to be enough. Body image has long been an issue for me, and learning to love my body no matter what size or shape, without shame, comes slowly. I had to learn to think outside the stereotype I felt I needed to live up to, and instead focus on the many things I do to keep myself strong. Opinions are subjective and I might not fit anyone else’s ideal, but I am 100% me. Comparing to anyone but myself resulted in an unhealthy feeling that lead to never feeling I was enough, and I am.

It doesn’t matter what i look like. Whether heavier or thinner, I am loved. Sure, I like being thinner like I am now, but I face a lot of obstacles, and regardless of my size I am enough.

Allowing my vulnerability to show has also given me great strength. There is something very liberating about baring one’s soul, and other people appreciate it even if they can’t quite identify it. Vulnerability includes being honest and authentic with ourselves and others, and only then can a true connection be made. Even though we could get hurt in the process, it’s worth it because we learn that even though we are raw and sometimes flawed, we are still enough.

But by far the most valuable lesson this book taught me is that I need to be as compassionate, forgiving, and understanding with myself as I am with others in my life. We are always quick to comfort others when they feel they have made a mistake, but we don’t offer ourselves the same courtesy. I deserve compassion. I deserve forgiveness. I deserve understanding. I am human, too. And I am enough.

Bru always always assures me that I am enough.

This book was no ordinary book for me. What I learned is that it’s very liberating to go through the process of accepting that I am enough. In every way. If you are ready to learn how to accept yourself as enough, the minutia of daily life that normally makes you feel inferior, no longer weighs you down. The progress I have made has not been easy nor has it come quickly. But every day I am making steps to be the truly happy and authentic me that is just waiting to make her appearance. I am not sure the version of me that first listened to this book would even recognize me now, and I’m not even done yet. In the meantime, I can rest comfortably knowing that I am, indeed, enough.

Depression

Sometimes in life, we find ourselves in a place we are not accustomed to. I’m not talking about a physical space, but rather the space which occupies our minds. For this glass-half-full girl, it is very difficult when my mind wanders off the usual sunny path I follow.

Sometimes the inside just doesn’t match the outside.

People with chronic illnesses are definitely more subject to suffering from depression than your average, healthy person, and many of us do take antidepressants to help us manage the weight of it all. But even with medications, there are times when depression can overtake us, and that’s ok. One of my MS sisters told me she “doesn’t live there but she visits on occasion.”  I love this analogy because it makes me feel like it’s ok, especially because I so strongly believe that as human beings, we need to experience the whole range of emotions in order to appreciate everything in our world.

For me, my frustration has been building since I broke my toes. I never thought that two little toes could affect my entire body the way they have. But it’s true. Those two toes have affected my balance and stability, as well as the alignment of my entire body. I am beyond grateful for my trainer and her patience that tempers my disappointment even though she can’t make me heal any more quickly than I am. I am desperate to get back to working out like an athlete, not an MS patient. Anyone who has ever been an athlete can surely relate to this, the feeling of losing despite the hard work being put forth.

My ankle is wrapped in kinesiology tape in hopes that my stability will improve.

This little setback came right on the heels of breast cancer. It seems like I didn’t deal with the emotions of a cancer diagnosis because I just put myself on autopilot to do what I needed to do, the way I always do… with a smile on my face. Now I have completed treatment,  but opted out of the prescribed protocol of endocrine therapy in favor of handling the continued treatment with a naturopathic oncologist. But I feel like I’m hanging in limbo, waiting for someone to either tell me that I am cancer free or that I have a recurrence of cancer. Plus, while I felt loved and supported through my entire cancer journey, now that it’s “over” (for the others in my life, but will never be for me), life goes on for everyone else while I feel like I am waiting for the other shoe to drop. And meanwhile, breast cancer precluded me from going on a new Disease Modifying Therapy for MS which I have had my eye on for years as it progressed through clinical trials all the way to approval. This was a huge blow and as I see more patients that are lucky enough to take it, I get more bummed out.

Then there are the relationships that have changed, for reasons I don’t understand but I am working hard to accept. I generally find comfort in my MS sisters but it seems we are all in a bit of a funk and dealing with our own issues so it has been way too long since we have been able to spend any quality time together. All of these things together have been adding to the weight I’m carrying that is diametrically opposed to who I am. I mean I cried for six hours the other day, which is so NOT me, especially considering that I often can’t cry even when I want to, thanks to the antidepressants that usually help maintain my emotional stability!

This little girl knew I was upset and she sat on top of me as I cried.

I recognize this place, as I (like my MS sister) do visit occasionally. While I am here, I take note of all of my feelings: the good, the bad, and the ugly, so that I can further appreciate all of the amazing things that I am blessed with when I leave. And I always leave, knowing full well that it’s ok to come back to visit, but it just isn’t where I live.