Tag Archives: acceptance

A Reason

In light of circumstances happening in my life right now, I am bringing back a post that I originally published in August of 2014. I think what amazes me most is that years later, I still feel lost at times and certainly abandoned by people I never would have imagined would leave my side. But life has a way of surprising me, and not always in good ways, which means I just pick myself up, dust myself off, and give extra gratitude for the ones who remain by my side for the long haul. You know who you are so allow me this moment to thank you and tell you that I love and appreciate you more than you know.


When looking back at my journey with MS so far, I think that the hardest part has been how my friends and family have reacted to the ever changing me. When I was going through the grueling process of endless doctor appointments and tests that ultimately led to my diagnosis, I learned a lot about myself, but also about my friends and family. I quickly discovered who was going to stand by me for the long haul, and who was not prepared to handle the obstacles along the way. Some learned as much as they could about MS in order to be more understanding of my situation and more aware of what I was going through. Others slowly phased themselves out of my life, unnoticed until they just weren’t there anymore. Still others ran from our friendship, deserting me in my time of need.

This was not easy for me to accept. I don’t like to say goodbye to friends. A quality of mine that is both good and bad is that I love fiercely and with every fiber of my being. I would do anything for any one of my friends, and have always put the needs and wants of others ahead of my own. I give without question and offer support whenever I am needed. It’s who I am. I admittedly don’t understand when people are not like me. All I know is that I could never just abandon a friend, especially during difficult times. I will never relate to the way that some people could let go of our relationships, seemingly without a second thought.

Each time I relapsed, more friends seemed to fall out of my life leaving an indelible mark on my heart. I wondered why it was so easy to give up on years of friendship for reasons out of my control. Why couldn’t they still see me, the person underneath? Why couldn’t they see that my heart was still the same, only now it was broken into pieces, with each person taking a piece of it when leaving my side?

Through years of heartbreak, I finally realized that if someone couldn’t accept me as I am then I should not expend any energy hurting over it. The fact of the matter is that energy is limited for those of us with MS, and I decided that I was not going to waste what precious little I had on people who definitely did not spend any time or energy worrying about me. I started to scale back my efforts with those people, and suddenly all new and amazing people came into my life! Instead of being bogged down by negative energy, I surround myself with wonderfully supportive friends who spew optimism just like I do.

I am adjusting to my new normal every single day, and I am incredibly grateful for my small circle of lifetime friends who have remained steadfast at my side. But now I have newer friends who have shown me such tremendous warmth and compassion, and I don’t know what I’d do without them!

Finally, I recognize that not everyone is meant to be in my life forever. I am able to honestly declare that I am thankful to each person who has walked by my side, however briefly, on this journey of mine. I wouldn’t be the person I am now, with the understanding that I now have. As if I needed further clarification on how I came to arrive in this place, my (always full of wisdom) therapist brought everything into perspective for me by sharing a quote: “People come into your life for a reason, a season, or a lifetime.” Indeed!

 

Rest

Rest. Such an innocuous word. You’ve probably said it to every single person you know, and probably multiple times. But I bet most people have never thought about the true balancing act that happens when you have Multiple Sclerosis. I would venture to say that I have been commanded to rest more frequently than the average person, and that’s ok… because sometimes I really do need the reminder.

If you have followed my blog, you’ll recall that in my past life (before MS decided I could no longer perform my job) I was a high school teacher. I worked long hours, arriving at my desk before 6 am, and usually not leaving until at least 5 pm. I then took work home with me, along with the emotional baggage that comes from truly caring about each of my students. My weekends were spent grading, planning, and prepping for the week ahead. It was a job that fulfilled me yet was truly frustrating because my work could never be done. It was all about prioritizing. Add to that lifestyle a daily schedule that was made for me and that I was contractually bound to follow, and I truly had no life. “Rest” was built in in the form of a period off, but resting seldom happened during that time, and god forbid I drank too much coffee, using the restroom only happened on scheduled time.  And I was able to keep up that pace without blinking for the first ten years after my diagnosis.

It is impossible to go from the scheduled life, which I thrived on for the better part of my career, to nothing. These days I have a schedule for myself, far less grueling than the one that was made for me by the Master Schedule Gods. I try to stick with my schedule because it makes me feel like I am human and I can be productive even without that job that ruled my life.

Gym, yoga, volunteering, and doctors’ appointments are on my schedule these days in place of being confined to the walls of my classroom like in my old life.

These days, I walk a fine line between “doing” and “resting”. Overdoing anything causes a ripple effect resulting in being forced to rest simply because my body does not allow me to function normally, even according to the standards of my constantly changing “norms” which are a part of every MS patient’s life. Not functioning means that I am down for the count, with a completely empty tank, and not enough energy to do anything, even eating or getting up to use the bathroom. And forget about taking a shower, because that just doesn’t happen.

As much as I hate it when I am ordered to rest, I know I should listen. But I want to think that I can still do as much as I used to, which I can’t. It’s a lesson that is hard to learn because in my mind I’m still that same strong, tenacious person that I have always been. In fact, I believe that I am a stronger, wiser person than I have ever been. Here I am, approaching 15 years with MS and I’m still learning and constantly adjusting to how far I can push myself, whether it’s in the gym, on my yoga mat, or even just with how much I can do socially before my body has decided that enough is enough.

Marty was always ready to rest with me and he made it so much better when i didn’t feel well.

One would think that after living a third of my life with MS, I’d have adjusted to all the changes that this invisible illness (and uninvited silent partner in my marriage) has brought with it. But a part of me longs to be, and often tries (without success) to be the person I was before my life was forever changed with my diagnosis. I am beyond grateful to my support system for their “gentle” reminders, because even though I want to be invincible and go, go, go, sometimes what I really need to do is just rest. It’s never what I want to hear but it is often what I need.

My biggest supporter and cheerleader. Without Bruce’s support I would not be able to live the life I am now.

Fall

There are so many things that suck about MS, but the longer you live with it, the more they just become a part of your “normal”.  I could list them but I honestly don’t really think about them all that often because I’m just used to living life with MS.

This week I was reminded of something very important that I tend to forget simply because, well… I have MS. Also I can do so many things but when I don’t think about small, menial things while I am doing them, I am inevitably made aware in sometimes painful yet always embarrassing ways.

Here’s what I mean. During the course of a typical work week, I take four yoga classes, I have two private sessions with my trainer, I volunteer one shift at Marty’s Place Senior Dog Sanctuary, and I get acupuncture and chiropractic care. And that’s just a normal week with no doctor’s appointments or other essentials like hair color, reiki, etc. I’m pretty active… and I would even venture to say that I’m fairly fit. As a former teacher, schedules are a necessity for me, and this one keeps me busy, builds my strength and centers me, and feeds my soul.

One thing I might mention is that most of my limbs are neuropathic, which means I can’t feel them. So if I’m not looking at my feet, I don’t really know where they are, except by habit. So when I’m working out or doing yoga I am completely focused on what I’m doing because I have to be.

One would think that with all the things I am able to do in the gym or on the mat, simply walking would be a piece of cake. Not so much. This week, I ran a very rare errand which required me to go into an actual store. It happens so infrequently, and I only do it when I am feeling up to it and at times I know the store won’t be crowded.

As dog owners, we burn candles every single day because we are paranoid that our house might smell like dog if anyone comes over. Also, I’m a bit of a snob and I only use the Yankee Candle jars because they somehow seem the safest to me. So every few months I go to the outlet and stock up on our usual fragrances. I “run” (but not literally) in and out within 10 minutes and I’m done. This week I bought three full crates of candles and the woman working there said if I pulled my car up to the curb, they would bring the crates out to my car for me. Excellent!

So I headed for my car thinking how efficient I was, and before I knew it, I was on the ground. Serves me right for getting ahead of myself! I couldn’t even tell you how it happened. I can tell you that I fell fast and hard. I can tell you that there was a really nice woman who saw it happen and asked if I was ok. I got up quickly, made a mental note that nothing seemed broken or dislocated, and feeling more embarrassed than I can even begin to describe, I told her I was fine, that I have MS and that I fall all the time. She asked if I was sure I was ok and told me I took it like a champ. I think that’s an observation of how hard I fell plus a compliment that I popped up so quickly. It was really out of sheer embarrassment. If I was at home (where I normally fall) I might have hung out on the ground for a bit longer.

I finally got to my car, brought it to the curb, and the 2 ladies from the candle store started asking me if I was ok etc., etc., probably more concerned about a law suit than anything else, but still. They were sweet. As I answered that I was fine, that I have MS, and that I always fall, I was half a step shy (because I wasn’t looking at my feet) and almost… ALMOST went down again. Thank the universe that I managed to keep myself upright, with a huge stumble, but upright all the same.

Most people looking at me would never guess that I have issues such as neuropathy because my body has learned (somewhat) how to compensate when it can. When we are going to places that generate crowds, or where I want people to be aware of my weakness (such as NYC) I use a cane as a visible statement to others. But on a normal day, I don’t use a cane, and certainly not when I have just had a private session with my trainer! My first instinct when I fall (even at home) is always to jump up and look around to see if anyone saw. I know I shouldn’t be embarrassed but old habits die hard, and in the world I grew up in, when anyone fell, it was followed by pointing and laughter, and often never-ending teasing. People always tend to be more sensitive if they see a cane or a walker, but I had neither. I’m so glad that there are some nice people out there, like the lady who said I took it like a champ, who didn’t make me feel embarrassed (I did that all on my own), but rather I felt that she was truly concerned.

Most people who don’t know me, might never even realize that I have MS. Hell, there are days that I don’t even think about the fact that I have it. But I do. Having MS means that I fall more often than your average person… and I have been that way since before I was even diagnosed. I remember the first time my husband witnessed me falling down the stairs, he came running to the bottom of the steps where he found me laughing. I have to laugh at myself because what I really need to do is take my sister’s advice. She tells me that I have to be careful when I am not standing on my head (see below).

From Mentee to Bestie

So not that long ago, one of my former students, now a college graduate wrote a blog entry about me , and now I feel it’s time for me to write about him. I even stole his title except instead of “mentee”, he wrote “mentor”.

On the day of his high school graduation… I was so proud.

I understand that I often talk about my former students on my blog, but sometimes I am just so proud of them, and they still play such an important role in my life that I can’t imagine myself being a complete person without them. They lift me up in ways no one else can, probably because I did consider them my kids when I was working, and now that I’m not, I have all these amazing young people in my life who I view almost as little siblings but way better. 

When I first met Josh, he was a withdrawn, shy, sometimes angry sophomore. Not only did I have him in my homeroom, which was five minutes a day, but I was also lucky enough to have him in one of my classes as well. We learned quickly that we shared a love of animals, we shared the same type of sarcastic, sometimes dry but biting humor, and we bonded every single day.

As a sophomore, with little support from administration, Josh fought to have himself de-classified. He had been classified with a “learning disability” in grammar school, and that classification followed him. When he realized that he did not require services and that he was not being challenged in his classes, he disputed the classification, and even though it’s very rare, he succeeded. Clearly, he was right that he needed no special education classification because after graduation he went on to Montclair State University, where he graduated in four years, with honors.

The biggest change I witnessed in Josh was when he was 17 years old, and he went from being a sadly closeted adolescent to an out and proud gay man. His whole demeanor changed, and suddenly he was more joyful, and full of confidence. I was so proud of him then (and still am) because we all know that the high school years are traumatizing for anyone, and even more so when dealing with the extra baggage that Josh had been carrying. Sadly, other teachers were not so respectful of Josh. One told him he better study so as not to end up back in the “retard classes” (not my words… ever). Another told him to work harder so he wouldn’t end up like his brother (who suffers from drug addiction). And yet another had the gall to make fun of the homosexual community in front of Josh’s entire class. It’s no wonder that he couldn’t wait to graduate and meet some more open-minded people. So off he went.

When he was in college, he would send me screen shots of his grades… Dean’s List. My heart soared with pride. He worked hard and was rewarded with stellar grades, good relationships with his professors, and friends who understood and accepted him. Whenever he was on break, we got together to catch up and it became clear that Josh was someone I truly enjoyed chatting with, and that he would be one of the ones who would forever have a very special place in my life (and my heart).

Now that Josh has graduated, he is going through the process of trying to get a “real” job, sending out a gazillion resumes hoping that just one person will take a chance on him. He is experiencing what happens so often: jobs want experienced staff but how do you get experience if no one gives you a job? He (like I did all those years ago when I graduated) is doing the retail thing in the interim, but not without questioning why the hell he worked so hard in college to be stuck in a small town (which he hopes to escape) working a retail job that anyone could do. I tell him when we get together (every week without fail) that it’s a rite of passage and that someone will take a chance on him and that he just needs to be patient. Easy for me to say, but patience does not come easy when you are in debt from your education and making drinks at Starbuck’s.

Josh has become such a staple in my life that he has even been to my home to watch some of our favorite shows together, and has met Bruce. Josh is motivated to do better and to be better than all the BS that surrounds us all. He is smart, well-spoken, intuitive, witty, and I adore everything about him. We share so much and I trust him implicitly (and vice versa). Every week I think to myself that this young man could not possibly be the child I once met. He has grown more than probably any other former student of mine, and I just couldn’t imagine my life without him. As much as I have been the “big sister”, Josh has stood by my side through MS, cancer, and everything in between, and I would not trade him for anything.

So if you are reading this and looking for someone awesomely spectacular for your company, Josh has a degree in Communication Studies (Public Relations), and I can promise that you will not be disappointed. 😉

Yoga

I know that I have written about yoga before, but my practice has evolved so much in the two short years that it has been a constant in my life. In that time, I have gone from “tolerating” it to loving every single thing about it. The beauty of yoga is that they call it a practice for a reason, and on good days, I astound myself, while on others I try to figure out why the heck I can’t do what I just did the day before. Then I remember that I have Multiple Sclerosis and there is literally a disconnect between my body and my brain. But I never regret my practice because it is so much more than physical for me.

Downward facing dog.

When I get on my mat, I am truly in my space. It’s my time for me to be genuinely present with myself without feeling any pressures from the outside world. I love removing myself from the real world while I connect with my body and feel what I can do when I give my body permission to open up. The mind body connection is so powerful and it puts me in a very meditative state. Now I didn’t always love yoga, but once I found the right instructor, as well as the right mindset, everything changed for me.

Upward facing dog.

In December, a local yoga club ran a “12 Days of Yoga” challenge on Instagram. I was skeptical because in the scope of the world of yoga, I’m an average yogi at best. I work harder than most because MS makes me do that, but I’m ok with that. I don’t compare myself to anyone except me so I am happy with my progress. A friend of mine, who is a teacher that I used to work with, and has since become a yoga instructor (shout out Jess!) tagged me and told me that I should definitely participate in the challenge. I got all frustrated with the logistics: post a flyer indicating your participation, tagging the sponsors, etc., and I found it overwhelming. Then my beautiful friend, in true teacher fashion, messaged me and broke down exactly what to do… for those out there who know teaching terminology, this was true differentiated instruction for this girl (me), who really needed it.

Chaturanga. And Scarlet!

The challenge included a pre-set list of poses, and each day I was to post a picture of myself, with any variations or modifications necessary, and tag all the sponsors of the contest. I do yoga every day anyway, and thought it would be a great way to keep me on my mat and also give me the opportunity to win prizes. Truth be told, I never win anything, so that wasn’t really a motivation for me. I just wanted to prove that an MS patient need not be limited to chair yoga.

Crane (or crow) is a very difficult pose that I have been working on for a while. My modification here is one foot on the wall to help the balance.

I must have made my point because (amazingly) I won a beautiful new yoga mat… more specifically, an amazing Lululemon yoga mat. I was beyond grateful, and also incredibly surprised. The mat is so nice, and like I said, I generally never win anything, especially something so perfect for me and my lifestyle. As if that was not enough, I found out a few days later, that the yoga studio that sponsored the challenge has a foundation, and that they are giving me a year membership to the studio, paid for by the foundation. I was almost moved to tears. Yoga studios are expensive, and rightly so because of the personal attention that is given. It’s something I couldn’t afford without making major sacrifices financially. I have been known to do drop in yoga classes at random studios for $15 or $20 a session, but an actual membership is not something I ever imagined I could have. I couldn’t be more appreciative.

On the day that I picked up my brand new Lululemon mat.

I didn’t love yoga from day one, but once I found the right instructor, I got hooked, but I never thought it would change me so much. I am more in tuned with my body, and I’m aware of what it needs when I get on the mat. I am able to transcend anything that is happening in my life when I am focusing on my practice. I have learned to keep the positive energy flowing through my body, and to look at others with more compassion as a result. Most importantly, I have learned to challenge myself, without fear of failure. Yoga is a practice, and challenging myself in my practice only helps, even if I can’t do everything perfectly all the time. Like MS, every day is different on my mat, and that’s ok. If I never challenged myself, I might never have grown to love all the different aspects of yoga the way I do.

This one was a modification because I was supposed to do a handstand, but my recently dislocated finger was not ready to bear my weight that way yet.

This is all a metaphor for life itself, really. We never know what we are capable of (or consequently the rewards that await us) if we don’t challenge ourselves to do the thing(s) that feel(s) intimidating. There have been many challenges in my life, and the only ones I regret are the ones I didn’t accept. This yoga challenge was something I knew I could do, even if I had to modify a pose or two in order to participate, and I’m so glad I did. More than anything else I know that taking on a challenge is nothing to shy away from. In the worse case scenario, you learn a lesson to help you succeed at the next try, and that’s as valuable as anything. The next time you are faced with something you want to try but you are afraid, I dare you to try. You just might surprise yourself! Namaste.

For the plank day, I added some variations to challenge myself. See that? I challenged myself within the challenge. It’s how I roll.

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!

 

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!