Monday Dog Blog: Extended Family

Aunt Sue with Tovah Rose and Gershwin

We love the people who come into our home to help out with things like cleaning and pill packs. 

Kisses from Tovah Rose!

Aunt Sue cleans the house, but she also always takes time to snuggle with us. We love her!

Tovah Rose as a Little Puppy!

We've had her wrapped around our little paws since we were babies.

Snuggles for Puppy Gershwin

Snuggle Time is the BEST Reward After Hard Work!

Nurse Mary visits once a month to deal with all of Mommy's medications, pill packs, oral syringes and supplements.

We Love Nurse Mary

When she is done, we get lots of cuddle time! :)

We've figured out how to get these two folks to let us in and out, give us treats and spoil us rotten. They talk to us and tell us not to fight with each other!

Happy Monday!

Blessings,

Tovah Rose and Gershwin

My 17 Year CeLeBrAtIoN! :)

Girls Just Wanna Have Fun: Marjie and Me

Afternoon Visit with Rebekah, Katie, and Kale (Quinn Wouldn't Join Us for a Photo! :))

After three days of reflective posts, it's time for a light and fluffy one.

Just as I described in my anniversary post on the 18th, I celebrated my Anniversary of Getting Sick by 1. Going to Visit Rebekah and her new baby girl, Katie, and 2. Going out for after dinner drinks with the girls.

Sleeping Beauty

First up was my visit with Miss Rebekah and Miss Katie, who was just one day shy of being one month old. 

New Mommy Again!

Notable: This is the first time I have actually seen the upstairs of Rebekah's house because I can finally do the stairs! Whoop Whoop! 

I was also able to show up at her house with a gift in hand, including fresh flowers that Mom and I picked up at the grocery store on the way over. I took so much joy in being able to go into the store sans Rolls, pick out the flowers, purchase them and take them over to Rebekah's.  This is such a simple act that people do every day and it gave me such a sense of accomplishment and hope. I also laughed because Mom had to show me how to use the self-checkout machine. :)

Miss Katie let me hold her a lot. :) 

Kale adores his little sister, loves to help take care of her, and most especially loves to kiss her on the forehead. When I captured this series of moments between Kale, Rebekah and Katie, I just couldn't resist posting because they are so tender and sweet.

Bright Eyed! Please Note My Pink Bow!

Miss Katie woke up and opened her eyes before I left! :)

I so love my time visiting with Rebekah--she was the perfect person to spend the afternoon with. What a contrast to think about having met her as my caregiver when I was very very sick, and now to be over at her house on my anniversary hanging out and snuggling with her new baby.

I was grateful to spend time with a good friend and her family. Thank you, Rebekah, for your decade of friendship and caring.

I Couldn't Resist This Evite!

After my visit with Rebekah, it was time for a nap and then...

Girls' Night Out!

Clockwise: Christine, Me, Marjie, Monica, Olivia, Danielle, Melissa, Megan, Leslie (Barb is Hiding Behind the Camera! Ha!)

This time of year, it sure is hard to get a group of girls together, but those of us who could make it had a lots of fun. I had a mix of girls from all different social circles, but everyone managed to gel just fine. I admit I was a little nervous about that! :)

I was joined by neighbors, high school friends, Jewish group friends, my step-sister and two new friends. 

We were all a little frustrated by how long it took us to get our drinks, and I'm thankful the girls all kept their spirits up in light of the celebration.

Danielle (neighbor) and Melissa (Just Jewish Girls Group)

Leslie (New Friend Through Our CSA), Barb (Ha! Got her NOT Behind The Camera), and Christine (Old High School Friend)

Making Goofy Faces

I ordered a citrus martini on the rocks and it took me two hours to drink it. :) 

We toasted to my health and celebrated life.

Everyone got along really well.

I sat up in my new short dress for over 2 hours. And that was in addition to having visited Rebekah earlier that day!

Citrus Martini

I'll never forget this anniversary--the one that I found myself in a place of CELEBRATING instead of MOURNING or GRIEVING. 

I want to thank all of the girls who made the extra effort to come out and celebrate with me in the midst of their busy schedules and enjoy our little Partini. I want to thank Rebekah for her friendship and for sharing her new baby girl with me.

To Life!

Blessings,

Emily

17 Thoughts On 17 Years (Part III)

Low Tide at Sunset Beach. The Beach is HUGE!

"Dance is the hidden language of the soul."

--Martha Graham--

Water Designs

13. Love Makes All of The Difference. For Me, That Has Been Family, Friends and Dogs. Yes, it's cheesy. And no, we can't live on love alone. But it is SUSTAINING in its incredible power. If you are reading this post, you are likely one of the people who has loved me, sustained me, supported me, comforted me, stayed loyal and faithful when I could not reciprocate in any way, traveled to visit me, sent me cards/gifts/flowers, and simply LOVED me for me. You loved me in spite of illness. For my parents, that love has been full of sacrifice and heartache, but also hopefully, reward. Four dogs have loved me through this illness--Winnie, Asher, and now Tovah Rose and Gershwin. I literally cannot survive without a dog in my life. At an appointment with Dr. ANS one year, he commented on my support network. He noted that it was unusual for people with chronic illness like myself to have such an incredible support network. To all of you who make up that network and who have stood by me year after year, I cannot ever thank you enough or ever repay you for what you have given me. Your gift has been in giving me life when I felt I couldn't keep going. You have literally and figuratively been the angels who sing the song for me when I cannot.

Designs In The Sand

14. Forty is Looking Fabulous Compared to 30! A lot of my friends are bemoaning turning 40 or just getting older in general. I feel more hopeful and healthier at 39 than I did at 30. When I think about my life at 30 compared to where I am at now, I feel very optimistic about what this new decade has to bring compared to what I have endured the past 10 years.

At The End of Sunset Beach/Bird Island

15. How I Feel These Days. What Does 'Better' Look Like? I have no idea what 'better' will look like as time goes on, how much my body can heal, or what the maximum amount of functioning I might be able to expect is. I'm not sure any of us can predict that. Currently, my body has continued to heal with the support of PT, acupuncture, massages, counseling, more activity, and LOTS of medications. I have seen continuous improvement over the past several months. I think it is important to remember that I still sleep a lot, I still need a lot of rest, I still take a nap, I still have to use the wheelchair for outings, I still need a LOT of help to manage my life, I still can't focus to read much, I still have an awful time with standing. Put simply, I still have limited spoons. On the flip side, I sit up longer, I go out more, I can handle big groups and loud noisy places, I sleep better, I can watch TV or concentrate longer, I eat all of my meals sitting up at the table, I go out for meals, and so much more. The biggest way *I* feel these changes is in the amount of symptoms I feel and am aware of at all times. I used to feel that I could never escape the symptoms or the suffering from them. Now, I have times (and often stretches of time) when I am only vaguely aware of symptoms. It's a LOT easier to enjoy life when symptoms are not constant and overwhelming in nature.

Jetty At the End of Sunset Beach/Bird Island

16. I Am A Warrior. I Am Inspirational. There's a lot of talk in the disability community about these words, especially the word 'Inspiring.' Over the past few months, I have re-examined how I feel about these words. Cancer survivors or people with cancer are often called warriors. We have a lot of language for people who are dealing with cancer. We don't have the same language for people living with chronic illness. Finally, as I watched my beloved Golden State Warriors lead by Stephen Curry, I realized that the word Warrior is not reserved for cancer only. Lots of people are warriors. For all sorts of reasons. Including me. 

Moss Covered Rocks

The same goes for the word inspiring. People with disabilities (PWDs) often feel that being called inspiring means they are only considered inspiring because they are sick. Here's the scoop. Lots of people are inspiring--sick or not sick. And we NEED inspiring people in our lives. They make us better people. The issue is that we not make people inspiring simply because they have cancer or another illness or have lost limbs. Instead, we must call them inspiring not because of their illness, but because of how they live their lives and because of who they are as human beings. When I tell my friend Josie she is inspiring, it's not because she has Cerebral Palsy and many other health issues, it's because of how she lives her life. When I tell my mom she is inspiring it's because she's a pioneer as a woman and because she faces adversity with grace.  

I'm okay with being called inspiring or with being an inspiration to others. To me, that means I'm doing a good job facing adversity. If I tell you that you inspire me, take it to heart, because it's not a word I use lightly.

Rocks, Moss and Shells

17. Seventeen Years is a Very Long Time. Take a moment to think about the last seventeen years of  your life. How do you measure it? Children, marriage, jobs, grandchildren, degrees, moves, travel, love? If I really think about what I have done for 17 years, I wonder how I did it. How did I feel that awful for so, so long. How did I suffer that much day in and day out and not give up? 17 years is a long time to be mostly homebound, sometimes bedridden, and feeling horrible. It's a long time to miss out on what your peers are doing in life. It's a truly sobering number. I had begun to accept that my life would continue at a very low level of functioning. It's exciting to think that my life might be turning in a completely new direction. 

Loved Reaching This Part Of The Island!

Blessings,

Emily

17 Thoughts On 17 Years (Part II)

I gratefully thank you, oh Gracious One, for restoring my soul to me.

Into Your arms, I entrust my spirit and my healing, while I sleep and while I wake. And with my spirit and my body also, as long as You are with me, I will not fear.

May I be peaceful,

May I have ease of well-being,

May I reach the end of suffering,

and be free.

-- My Morning Prayer--Adapted from Different Sources including Judaism and How to be Sick by Toni Bernhard--

My Favorite Place

7. My Story Is One Of Hope When We Think Hope Is Lost. At my last appointment with Dr. ANS, he remarked to me that my case was one that reminded him to keep hope alive even when it seemed like there was not hope. And I consider this guy an optimist! He's never wavered in his commitment to bringing me to improved health, even if inside his heart he felt it might never happen. I have seen over 100 doctors in the past 17 years. I have been told that I am one of the most complicated, complex, challenging and REFRACTORY cases ever seen by any of these practitioners.   I am in awe that I have been given this gift of improving health.

Sunset Outside Our Condo Window In Sunset Beach, NC

8. It's all about the TEAM. Where I am now health-wise is all because of the team of people I have assembled: Dr. ANS, Dr. GI, Dr. Listener, cardiologist, pharmacist, massage therapists, physical therapist, counselor, acupuncturist, naturopath, etc. To all of the 100 or more practitioners I saw before I found this team I want to say: "I listened to my body. I did not take no for an answer," as a geneticist at Hopkins so wisely told me to do in 2004. Dr. ANS is by far the most instrumental human being in my healing. It took 6 years from the day I got sick until I found Dr. ANS. It took until last year to find the team I have now.

Pine Cones

9. I Feel Sad About Babies.  I still feel sad about not being a mom. Some days it feels like a cruel joke that so much healing is occurring at the end of my childbearing years.  This is made even harder when I look into the eyes of the man I love and think about how I had always dreamed of having a child together with my life partner. I am keeping my heart open to what life has to offer in the way of children. Adoption. Or maybe no children at all. How far can my healing go? Can I reach a point of being well enough to care for a child (with the help of a village)? How much can I ask of a partner? Of family and friends? I don't know. I'm still not at peace about this part of my life. Just today, I read David Brooks's editorial piece Hearts Broken Open, in which he discusses finding life's meaning. "I was struck by how elemental life is," he writes. "Most people found their purpose either through raising children or confronting illness and death." Even my Ph.D. pioneer of a mom would say her greatest accomplishment is having me.

A Dreary Day

10. There's No Such Thing As 'Catching Up' On 17 Years of To-Do Lists. I Also Probably Owe You Something. Every time I get behind (which is all of the time), or especially during times of crisis (a lot of the last 17 years), we attended to what we absolutely had to and left the rest for 'later'. This has resulted in BOXES and BINS full of papers and things to be sorted, cleaned, responded to, etc. My inbox alone has thousands of messages. I always thought: when I feel better I will write that testimonial for the Lowchen breeder we used, I will write those thank you notes for all the flowers/gifts/kind gestures I received, I will get those photos organized, I will...I will...I will. What I'm finding is that I'm doing my absolute best to keep up with the NOW and I'm still behind, so there is just no such thing as catching up. I don't know what this means will happen to the 17 years of STUFF that has been piling up. And I guarantee it means I owe you a baby gift, a wedding gift, a thank you note, an email, a phone call, a birthday card, a new job card, or a zillion other things. Letting go of the fact that you won't get these things is really really hard. I probably even have a card that I bought and never got written to you.

Every day I am trying to figure out how to catch up, how to live in the present, and how to look ahead.

Sunset Outside Our Condo at Sunset Beach

11.  How I Remember June 18, 1998. I woke up with a flu-like illness that was different only in the fact that it was accompanied by an unrelenting migraine type headache that persisted for days along with chest pain and shortness of breath. This happened one month and one day after college graduation. I never returned to my previous level of functioning.

Breathe In, Breathe Out! :)

12. Going from Illness to Wellness is a Process. It's at once exhilarating, exciting, wonderful, glorious and terrifying, confusing, and full of trepidation. I wonder if this is really going to continue? Will I ever be as sick as I was during those most awful years? What will relapses look like now? For 17 years, I have mostly been part of a world of the sick, a world in which I felt like an outsider looking in, like an observer of life. Now, I am finding myself somewhere in between the world of the sick and the healthy. I'm much less of an observer and much more of a participant. 

Figuring out a new balance is incredibly challenging. I've been pretty greedy with my new freedom. I just want to do EVERYTHING. And NOW! I want to grab the bull by the horns. I want to say YES to LIFE! Part of saying yes, though, is also saying yes to staying in, saying yes to down time, etc. Right now, staying in and down time are much-needed but I realize they are scary because they remind me of so many years of not having any other choice. 

Having so many possibilities and choices is a good thing. It's also a very new and difficult thing.

I feel almost manic. I shop too much. I go out too much. I eat too much. I push too hard. I say "yes" too much.

I'm not complaining. I'm just sharing what is a new and different balancing act for me.

Sunset Beach Pier

Blessings,

Emily

17 Thoughts On 17 Years (Part I)

Seagulls At Sunset Beach, NC

Hope is the thing with feathers -

That perches in the soul -

And sings the tune without words -

And never stops - at all -

--Emily Dickinson--

We Reached The End Of Sunset Beach One Afternoon. It Was Gorgeous!

On my anniversary, I mentioned that I had a longer post swirling in my head. I hope you'll take the time to journey with me and discover where I find myself 17 years into this illness. I've loosely modeled this post after Toni Bernhard's blog posts on the same subject. Her blog, Turning Straw into Gold, can be found on the Psychology Today website.

Here are 17 thoughts on 17 years of illness.

I will publish this in three parts, especially because I know so many of my friends have trouble concentrating to read for long periods. 

Sunset Beach Pier

1. The Body Really Can Heal.  That tune, that tune of hope of which Emily Dickinson speaks, stayed alive in me somehow for all of these years. I have endured periods of deep doubt that any healing of this kind was possible. It still AMAZES me every day that my body is doing what it does, is continuing to improve, and that it could even have the capacity to heal after so many years of catastrophic illness.

Bird Island at Sunset Beach 

2. 10 Years Ago Was The Worst and Most Traumatic Year of My Life.  In January of 2005, I had my gallbladder removed and ended up in an tailspin so terrifying that everyone, including Dr. ANS, was left helpless and lost. We lived in constant fear, on constant alert, sleepless night after sleepless night, my Dad and Mom alternating who slept in bed next to me each night. I couldn't eat. I could not even always get out of bed to use the bathroom. We had IVs in our home. The suffering was so unimaginable and unrelenting, I thought I could not survive. It's a lesson in contrast, hope, survival, and so much more when I think about where I am now.

Sunset Beach Sand

3.  Chronic Illness Is About Coping. When living with an illness for which there is no cure and few treatment options, surviving and LIVING becomes all about COPING. It's about finding the perfect heated slippers to keep cold feet comfortable, putting recliners everywhere in the house so I can be a part of the 'action' in any room, finding a table to insert under said recliners so I can eat reclining, setting up the car with lots of pillows and blankets so we can travel, getting a smartphone when I'm bedridden so I can still have contact with the outside world, having a dog to snuggle, finding activities to distract myself--the list goes on. The bottom line: it's about finding ANY and EVERY way imaginable to make life as comfortable, as full of QUALITY as and as low on suffering as possible. It's an expensive, creative, and time-consuming matter!

Bird Island

4. Five Years Ago Was 'The Year of the Pajama'.  This was definitely the second worst year of the illness (other than those terrifying years of trying to get diagnosed and find medical care). Most of you remember 2010 as the year I got a port inserted, did IV antibiotics in the home, spent the entire year in bed and homebound, and decided I'd at least really enjoy my pajamas. I share these memories to give myself the perspective on how dramatically life has changed and to never forget the suffering I have endured.

Nature Makes The Most Beautiful Designs!

5. My Improved Health Also Impacts Those I Love.  When I asked my mom how it feels to her to compare where we are now to where we used to be, she said the big change is not feeling like she is always hyper-vigilent and on edge--waiting for the intercom to wake her in the middle of the night, afraid to leave me alone in the house for any period of time, never going to work without worrying, and never being able to plan ahead. We ALL breathe easier when the one we love is healthier. The past 17 years have been a HERCULEAN effort on the part of my parents to support me financially, physically and emotionally, as well as endure the caregiving burdens themselves. Those burdens are far from over.

Sunset Beach Seagulls

6.  Chronic Illness is Still My Full-Time Job. People seem a little confused by this. I'm often asked when I will be going back to work. I'm told I must have a lot of time on my hands. Honestly, I am so busy I forget to breathe. Continuing to heal and maintaining the health I have gained are my 'work'. My time is spent on more fun things than I used to be able to do, but it is still mostly dedicated to healing--to physical therapy, doctors appointments, counseling, acupuncture, massage, etc. I currently still only do my ADL's (Activities of Daily Living), not my IDL's (Instrumental Activities of Daily Living). This means I still don't do laundry, cooking, cleaning, grocery shopping, etc. I also don't drive. Our goal as a family is for me to continue my work at healing and to help me to become as independent as possible. That is my work.

Ocean Isle, NC: Shells In The Sand

Blessings,

Emily

Monday Dog Blog: Parallel

Mommy loves when we do cute stuff like lay down side by side in exactly the same position.

It's been kinda hot out this week, and we are not big fans of the hot weather. So we have been catching up on our naps.

And since Mom said I (Tovah) kept having bad hair days, Mommy put bows in our hair. 

Happy Monday!

Blessings,

Tovah Rose and Gershwin

Anniversaries: 17 Years On The 18th

Kousa Dogwood Tree

Today--June 18, 2015--marks 17 years to the day that I 'got sick'. 

It's what I call my Anniversary of Getting Sick. 

Every year I take some time to reflect on how I'm feeling about all of these years of illness.

I have a longer post swirling in my head and despite my high hopes, I didn't have the ability to get it written in time. Another day.

Planted For My 15 Year Anniversary

Seventeen years is a long time. A long time. It's almost half of my life so far.

When I type that number and think about how many years have been given to illness, it's a sobering number.

Yet, I find myself feeling mostly celebratory on this Anniversary of Getting Sick.

It appears my body has begun to heal and that every day it continues to heal. To me, that's an amazing miracle. 

A Beautiful Reminder Of Life (And An Excellent Spot of Shade for Gershwin)

This is the first year that I will be able to CELEBRATE LIFE in a new and different way on my Anniversary of Getting Sick. And that's just what I will be doing.

Instead of planting a tree or creating a ceremony to mark what has always been a sobering event, I'll be busy today enjoying my NEW life.

A visit to see Rebekah and her new baby, Katie, is in order for the afternoon. 

In the evening, I will go out with a group of girls for an after dinner drink. 

When thinking about what I wanted to do for my Anniversary of Getting Sick, I thought: I want to go out with a group of girls and have a martini at my favorite restaurant! I want to do something that girls go out and do all of the time without a second thought and I've never been able to do.

I'll be out of the house, spending time with friends, snuggling new a new baby, having a drink, wearing one of my new short dresses and wearing a very big smile. 

I will be OUT LIVING.

This Is The First Year It Has Bloomed! How Fitting Indeed!

This anniversary is a celebration. It's a reminder of how far I've come, of how much I've persevered, of how resilient I have been, of how the body can heal even when we think it cannot, of the joys I hope continue to come my way, of how illness has challenged me to evolve into who I am today, of the medical team that has gotten me to this place, of the family and friends and puppies that surround me on this journey, of the transition from illness to wellness and of how very fortunate I am to be here living this thing we call life.

How very fitting that my Anniversary falls on the 18th. In Judaism, the number 18 is known as "Chai" or "Life". 

To Life! 

Blessings,

Emily