December and January Updates

I know I have been missing for quite a while so I decided to give some December and January updates. I have been super busy, mostly with family. December 13th, my 87 year old mom fell and fractured her hip. She was shoveling snow, yes shoveling! She is a feisty, headstrong woman who is totally independent. She was cleaning the snow off the top of her car (yes, she still drives) and didn’t want to leave the snow that she removed from her car onto the parking lot for someone else to fall. So she took a foldable shovel that we did not know she had and started shoveling it out of the way and slipped.

She required surgery and subacute rehab. As many of you know, I have not been able to drive in over a year due to cardiac issues but luckily, my husband was on vacation for two weeks, so he drove me back and forth, first to Albany Medical Center, only 20-25 minutes away each day, then to her rehab that is 50-60 minutes away, depending on traffic. She is doing amazingly well. I don’t know why I’m surprised. She’s a tough cookie! Here she is practicing getting in and out of a car in rehab. Mom in car in rehab

Now that Brian is back to work, my twin sister is doing all of the daily visits, since I can only get down there on weekends when Brian returns from his business trips. Soon, she’ll be going home because she is making remarkable progress.

Then I had several medical appointments in Boston at Brigham and Women’s. I will update about those appointments in an upcoming post because I will discuss information I learned from some testing done. The trek to Boston is always an all day deal, a three to three and a half hour drive each way, several hours at the appointment and a few stops on the Mass Pike. I’m always wiped out when we get home.

The very exciting update that I have is the new addition to our family. Since our beloved dog, Buddy died 7 months ago, I have been greatly missing him, his calming dog energy and the unconditional love only a dog can provide. I am in the process of attempting to get a balance service dog but the application process is difficult and the wait is long. A 2-3 year wait is typical for balance dogs.

So with the advice and help of a friend, Justine Blair Carroll, who owns Dharma of Dog, a dog training and behavior service in Saratoga, NY, we contacted Perfect Pets Rescue, Inc. There we found our sweet Twinkle, a senior dog who had been in a kill shelter and scheduled to be killed that day until someone saw the twinkle in her eye and took her out for foster care until she could be adopted.

I knew as soon as I saw her on the website that she was ours. I saw the twinkle in her eyes too! I had no intention of getting a senior dog with the pain of losing Buddy so fresh. But there was something so special about Twinkle. And she is!!!

We picked her up Friday night and it’s only Tuesday and she has acclimated into our lifestyle so well. It’s as though she has always been here. We are smitten with her. Love at first site for us and her.

Even if you are not a dog person, it’s tough not to smile at these pics.Twinkle

Twinkle sleeping
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Priorities for Healing

I have not posted in quite a while. The past few months have been challenging, but before I share some of the craziness, this is how I chose to focus on my priorities for healing. It is so easy to let your own health take a backseat when there is chaos around you… especially if you are a natural caretaker like me.

A close family member had an anaphylactic episode for the first time. She has the same diagnoses as me, but our trauma center was not familiar with it and did not believe her. She ended up in ICU and I had to be there every day to manage her care with the assistance of our mast cell specialist.

Then, I had an episode of anaphylaxis… that scary throat closing kind. My typical had been more cardiac with low blood pressure and low heart rate previously.

Next came several weeks of crazy low heart rates in the 30’s and 40’s, causing me to be short of breath, lightheaded and unable to stand for more than a few minutes.

Then my husband, Brian, had a freak accident. He fell on some unmarked liquid on the floor of a hospital he was visiting for work. He fractured his lower leg in two places, requiring a long leg cast, no weight bearing and minimal activity to prevent surgery.

Lastly, I celebrated my 60th birthday. I had told Brian two years earlier, as I lay in ICU after an anaphylactic episode, that if I was still alive at 60, I wanted a birthday party. This is significant because I had had so many back to back anaphylactic episodes that my physicians were unable to control, that I was not sure I’d still be here. Plus, I am an introvert and dislike parties. I had never had a birthday party. Brian’s leg mishap occurred right before my party, so my kids and I had to do all of the work. My kids each live 30 minutes and 40 minutes away, so I tried to take the bulk of the responsibility.

Here is what I have learned…
1. I cannot care for everyone else and leave myself to last. Hard lesson for me, the forever nurse.
2. I focused on the things that support my health, both physical and emotional. I cooked food to nourish me, meditated more each day, journaled my feelings and gratitude and let go of non-essentials (like my blog and cleaning).
3. I did more of the things that bring me joy. I fed and watched my birds, pet my loving pet, Buddy, colored in my many adult coloring books and spent time with my kids. They are not really kids at 29 and 35 but they will always be my kids.
4. No guilt allowed, over anything. I did the best I could do, with a heart rate that was so low, I wondered how it was sending enough blood to all of my organs.
5. Because I have such difficulty sleeping, I did not focus on the number of hours I slept (or did not sleep). I went to bed each night with the intention to let my body rest, to meditate and listen to soft music with my earbuds. No stress.
So… my family member survived the anaphylaxis despite the hospital. I survived my anaphylaxis well too. My heart rate is still way too low and my cardiologist is discussing pacemaker with my other specialists. Brian is doing much better. He is now in a short leg cast after 6 weeks in that uncomfortable long leg one. He still has a long way to go, but he’s more independent now, so I can have a bit more time for me. And my birthday party was wonderful! I saw family members that I had not seen in almost a year and couple of close friends who are near and dear to me.

Life is good. Remember to make YOU a priority for healing.IMG_4127

 

You Can Be Happy

Dealing with a chronic illness or even more than one is tough stuff to be sure. At times you can get frustrated, tired, angry and feel defeated. But yes, you can be happy too. It is so easy to get caught up in the symptoms that make you feel miserable, the medications that you must take to function and all of the changes in your life due to the illness.

Some of us have lost friends, lost jobs, had to move, deal with family members who don’t understand, try to find doctors that know how to treat the disorders, buy special food, wear different clothes, change cleaning products, deal with daily pain… well, you get it; the list is long.

But despite what sounds like a terrible existence, we can experience joy, love, fun and of course, be happy. How do you find this when you are feeling such pain? By shifting your thoughts. We tend to focus on the sickness. After all, we feel sick! But, what if you begin to focus on other things…

  • Mindfulness: you have all heard it, over and over. But do you practice it in your every day life? It is simply being aware from moment to moment and noticing exactly what is happening around you and within you. Right now, I’m writing this, but I also hear the water fountain in my husband’s office, so relaxing. I’m also aware that my back hurts, so I get up and stretch for a couple of minutes. I am staying in this present moment. No ruminating over past events or worrying about possible future events. You know how that is? Will I need to Epi and call 911 again? Will the ER know what to do? Have a plan but don’t waste energy. The present is just that… our present to ourself.
  • Gratitude: whether you write in a gratitude journal, use an app on your phone or share around the dinner table each night, expressing gratitude will shift your thoughts from fear and negativity to joy and positivity. If you’re not a believer, just try it for 2 weeks. Faithfully write down 3 things every day that you can be grateful for. Some days, it may be, I woke up today; I have eyes that can read my friends’ posts; I can hear this beautiful music. Others don’t have them. Some days will be better. I have books and books of written gratitude. I enjoy going back and re-reading them.
  • Music: whatever kind of music that makes your heart soar, your feet tap and your body relax is perfect. Some like jazz, some like country, others prefer rock, some like classical or maybe hip hop. I’ve been known to turn up the volume and dance when no one is around except my pup, Buddy. Good for the soul.
  • Plan a vacation: many of us do not get to go on vacations. Travel is difficult. But research from the Netherlands shows that the act of just planning a trip causes more happiness than actually taking the trip. So choose a fun and exciting destination and plan away!
  • Kindness: this is an interesting one but try it. According to Martin Seligman, the author of The Pursuit of Happiness, acts of kindness with no expectation of a reward, bring happiness. Even when we are struggling with chronic disorders, there are times we can fit in moments of kindness for another. You will feel that endorphin high. Nice!
  • Smile: even when you feel like you have nothing to smile about, smile. Your brain will perceive the smile as happiness and it can literally change your mood. My nickname at my last job was “smiley”.   🙂

I would LOVE to have you share your happy moments with me. And here’s a photo of “smiley” with Buddy.smiley