Erin & Rob's Medical Emergency Fund
$31,150 of $20,000 goal
It’s been four months since my stroke and I thought this would be a good time to give my final progress report.
I’d like to thank a number of people who have helped me with recovery over the last few months:
- my Physical Therapist, Camille from Mt. Auburn Associates. We have been working together on my balance and gait issues. I’ve progressed so much that that this week I was able to wear boots with a heel; what an accomplishment! We are also experimenting with using a TENS machine for pain management.
- the yin yoga instructors at Borealis Yoga in Medford for inspiring and teaching me to enjoy yoga, not for the physical workout, but for the meditation it can provide.
- the acupuncturists at Acupuncture Together for providing relaxation and comfort on difficult days.
- colleagues, friends and family who have listened to me grumble and offered me help time and time again. You are so generous and I can’t thank you all enough.
I am also pleased to tell you that after four months of fighting with my insurance company, we finally received reimbursement on our hospital bill! We are excited to return the generosity that was bestowed upon us and give back to organizations and other needy medical Gofundme accounts.
Lastly, Monday I had my four month MRA. I am awaiting the results and hoping that they show that my right vertebral artery has healed. I’ll leave you with that as a cliffhanger :)
Today is the first day of school for teachers at North and I am so sad to miss it! My colleagues have been so kind to continue to reach out to me, take me out for coffee and make dinner for me; I am so lucky and grateful! I look forward to October 13th, when I will be back in the library, working with the students and collaborating with teachers! Until then, I will be relaxing. Today I am laying on the couch (it’s 90 degrees on Sept. 2nd!!!)
Yesterday, I had an appointment with the top vascular neurologist in Boston; Dr. Louis Caplan at Beth Israel Hospital. He is renowned for his work with VAD/stroke patients. Dr. Caplan helped to reassure me that I am healing and that I don't have to baby myself; but also acknowledged that I have to take it easy and not be too hard on myself. He went through my scans with me and explained where the tear is on the vertebral artery. The visit was great and I left feeling better about where I am in the healing process. I’m planning on going back to him for an MRA in 4 months to see if the dissection has fully healed.
Finally, not surprisingly, the reimbursement process that we have been going through with our health care provider has been frustrating. At first we received a letter saying that we did not have the International Disease Classifications on our paperwork (they were not asked for). So, we did a simple search on Google and found the codes-- I guess they did not know how to retrieve this information? Then we were denied again; long story short, we are still working on it!
I hope this post finds you all well and enjoying life as Summer winds down. Recently, I have been having more good days than bad. Less pain in my head and more muscle in my legs (I lost all muscle while I was in the hospital). I am still finding myself tired after minimal effort but am lucky to have time off to get the 13+ hours of day of sleep that I need.
I went to see my neurologist last week and asked him what the next steps were for my recovery. He said that the goal is to not to have another stroke or hemorrhage. I was dismayed by this news, thinking that there was something more in my control that I could do to heal. He recommended that I take a little more time off from work to rest.
I am extremely lucky to work for such an understanding and supportive school system. The human resources department have been helping me with insurance information and other supports since I was in Turkey; my Principal and Vice Principal have been calling and encouraging me to rest and take the time I need. So, after discussing this with my neurologist, we agreed that I should go back to work on October 13th. The Director of Technology and Libraries and my Principal hired a substitute librarian to help cover for my absence at North. I am incredibly grateful to everyone at NNHS; administration, teachers and staff for all of your help and words of support.
While I was in Turkey, I put out a call to friends for suggestions on how to relax and get natural pain relief. One of my friends mentioned the Greater Boston Zen Center in Cambridge. I attended one of their meditation practices on Tuesday and found it to be a useful and calming experience. I loved the walking meditation but I think it will take me awhile to get used to the seated meditation-- my legs fell asleep after 15 minutes making the rest of the time rough.
My mum suggested that I read Tedy Bruschi’s biography which tells the story of his football career, stroke and subsequent recovery. I’m a huge fan of Bruschi’s; sporting a #54 official jersey during Pats games. I read the book yesterday and now have even more respect for him and all he had to overcome to get back in the game.
Other than that, the regular visits and cards from friends and family are the most helpful in my recovery. Thank you all for everything. You rock!
I'm writing from a porch in Narragansett, Rhode Island. I will be spending the week here reading and relaxing with friends. Last week, my first week back home, my mom and friends: Wendy, Liz, and Raquel came to visit and take care of me; giving Rob a little break from being my main caregiver. I feel so lucky to have so many people going out of their way to make me feel comfortable.
Since arriving back in the states, I've met with my primary care doctor and my neurologist. My neurologist reviewed my brain and vascular imaging and found that there is intracranial extension (in other words: the dissection is not just in the neck but continued to the brain) so he took me off of Coumadin to reduce the risk of hemorrhage. Now I am just on one Aspirin a day which has made my life so much easier to manage.
On Friday, I received another MRI because I felt like I had some pressure and pain behind my right eye; this symptom has lessened and I am waiting to hear the results of that MRI. It's strange how symptoms related to pain, pressure, balance and exhaustion just come and go. I never know what to expect day to day but for the most part, I am feeling well enough to take short walks. Oh, and I am watching at least one movie a day-- I highly recommend "Inside Out", the new Pixar movie.
I hope you are all having a great summer. I am not allowed to drink alcohol so please have a beer or a glass of wine for me. Thanks again.
Erin Dalbec is doing well! Thank you Michele Kennedy and Michael Italiano. Both of your friend's Doctors came by the room today during visiting hours. Dr Mordo Bardavit and another Cardiologist who I didn't get the name. The hospital staff there now thinks Erin's a very important person, which of course she is. Everyone has said we are at the best hospital with the best doctors we could have. Erin could not believe how generous everyone has been and is so thankful!
Erin is doing great today! She had physical therapy and stood on a balance board. She has a lot more energy. Finally able to have a Turkish coffee! Thanks to Jenny Frazier and Ty Vignone, Aynhan came by and helped us sort some billing out at the hospital and he is currently out picking up the best baklava in Istanbul for Erin Dalbec. Thanks again to everyone for all that you've done!!
Official diagnosis is tearing in the right vertabral artery and acute infarction in the postlateral segment of the medulla oblongata(4-5mm) It's not good. We have to now stay a minimum of 10 days for this to start to repair. Surgery will not help they say. She is under close supervision and is being administered blood thinners. The hospital staff is amazing. The doctor speaks very good english which is rare in the hospital. I'm not sure how we're going to do this but we will be here in Istanbul for at least the next 10 days
Glad to hear you're moving about. Getting out of bed is such an amazing feeling. My strokes were in the brain stem & cerebellum (all balance issues), but it was not a tear, but clots (maybe birth control? But no one is going to commit). Just curious if they've offered you any anti-nauseous meds for the flight home. I had a real problem with nausea every morning for about 3 weeks post-strokes. I wasn't as strong as you & went with pain meds for a short time. For meditation, to tell the truth, my low impact cardio exercise was amazingly helpful for me. I had to belt myself into a the stationary for about a month, but it made a big difference in attitude & pain management. Wow, I think you're awesome in your recover in such difficult circumstances. I hope you find some relief very very soon.
Hi Erin, I decided to check my school e-mail for the first time this evening, and I heard the news! I am thinking of you and sending you all of the good vibes in the world. Please, please, please let me know if there is anything I can do for you, even if that means making you laugh and singing B52s with you. Take care Erin and get well soon. We love you! -Brad
Erin, I am so glad to read your update. My modem went out on my computer and I had to wait for my company to send me a new one. It came tonight at 6:30. It was out since last Tuesday and I finally called for someone to come check on Friday, they came Saturday and modem was ordered Monday, blah, blah, blah. I am praying for you every day Erin. Rob is so busy but he did drop me a short message. Is it a bother if I call? Really want to hear your voice and am so glad you are finally home. Glad you got to visit with your Mom while she was up there. Much love to you and Rob. Keep getting better :-)))
Hi Erin, We all at Newton Public Schools are keeping you in our thoughts and prayers. We are here to support and help you through this. Heather Richards - Human Resources
Rob, we've not met, but I'm a friend of Jon Ritter-Roderick. After hearing about your story, I contacted a friend in Istanbul who lives only a few blocks from the hospital. She has offered to help with lodging info and any other outside-the-hospital questions you may have. I'm going to send her phone number to Jon with a little more info. She's awesome and one of the kindest people I've ever met.
MY PHONE NUMBER .. +90 533 477 23 73 AND I AM CURRENTLY IN ISTANBUL AND A POSITION TO SUPPORT ERIN
ANY INFO ABOUT ERIN PLEASE LET ME KNOW.. I AM TRYING TOP LOCATE THEM.. AND SUPPORT THEM.. DR. KAYAALP BUYUKATAMAN , PRESIDENT tURKISH FORUM ..