Hope Rising

On Saturday night, I attended the CD release party of a good friend of mine.  Her CD is entitled Hope Rising and each song represents a journey being traveled by someone with a chronic illness.  Most of the stories depicted in the songs are about someone who has Mitochondrial Disease.  I saw many of my friends at the party  and while we live pretty close together, we don't see each other very often because we are busy with our own lives involving doctors, illness, work, school, etc.  In addition to some of the proceeds going towards the United Mitochondrial Disease Foundation (UMDF), they will also go towards the Immune Deficiency Foundation (IDF) , a group dedicated to supporting disorders of the immune system.  Both of my friend's children have immune deficiencies and require immunoglobulin infusions.

Me along with two of my good friends.

(I clearly thought I had to bend backwards so my head wouldn't be cut off.)

As far as things go with my Child Life practicum/internship applications, I am still working on the essay.  I have worked on it since I gave it to a friend who has gone through a Child Life internship, but I don't feel like the essay is me, I don't feel accomplished yet.  This essay is a large part of my application since the rest is recommendations from CLSs I have worked with a Children's Hospital Boston over the years.  On average, these applications four parts and incomplete applications are not accepted so I cannot mail anything until I finish this essay.  Tomorrow I will make envelopes by writing the addresses and filling them with all the things I have so far, like my transcripts and recommendation letters.  I also need to call Boston Medical Center once more since I haven't heard from them yet.  I should also email Connecticut Children's and Cohen Children's in NY just to let them know I will send them my materials soon.  

Progress is currently on pause with my Baclofen pump.  My Spaulding doctor was away this week and will be on vacation this week.  (I was only aware he would be gone for one week.)   I also can't go to PT or OT until 12/2 because long story short, there was confusion and they won't have my chart until then.  In addition to the Hope Rising release, Saturday was also the two month anniversary since my pump was implanted and unfortunately I haven't had marked improvement.

Also, my cousin Stephanie recently published her first book of poetry, Whispers in the Soul.  Another friend is making Christmas ornaments to not only benefit Mitochondrial Disease research, but more importantly to raise enough money to retain her current lawyer so her third child can be returned to her care. Canada thought she was making her child sick, not Mito.

Week of Freedom...sort of...

This week I start outpatient PT and OT at Spaulding Rehab in Cambridge, which only involves two buses, not a bus and two subways.   My evals are on Wednesday which means I don't have regular PT or OT this week.  I still have to catch the same bus at 12:30, but the total time from door-to-door including appointments and waiting for the bus home should hopefully be less than 5 hours.  

As far as things go on the Child Life front, I have yet to hear from the CLS at Boston Medical Center.  I will try again after publish this post.  I finished Cohen Children's in NY's incredibly easy application and will sent that out as soon as I finish the essay.  I know I keep talking about  it. but it's one of those requirements that is really vague and as a result, I find myself avoiding it.   For Connecticut Chilldren's, I finished their application, but still have two or three essay-type questions I need to work over before they feel right.  I addition to these details, I also need to send along my transcript from Simmons College, my resume, list of goals, and my letter(s) of recommendation.  


As far as things go regarding my Baclofen pump, my doctor refilled it last week, increased my dose by 8% and added a single 50mcg bolus which seemed to lessen my spasticity a tad.  I'm  hoping for another increase sometime this week if another doctor is willing since my doctor will be out this week.  Dose adjustments require a trip to Boston, but I can handle once or twice a week.  I also hope to get back to volunteering at Children's Hospital Boston this week.  I could have easily returned about three weeks after my surgery, but I got lazy with things and kept running into deadlines.  I was also hoping to  make my return free from spasticity and be on the cloud 9 I was on during trial day back in June, but alas that has not happened, but we are hopefully getting close.  


In other news, my cousin, Stephanie recently published her first book, Whispers in the Soul.      Another friend of mine is making Christmas ornaments to not only go towards research for Mitochondrial Disease, but most importantly to raise money to keep her current lawyer so her third child can be returned to her care because Canada thought she was making her children sick, not Mito.

Interview, Spaulding and Volunteering

Yesterday morning I had an interview for the Patient-Family Advisory Committee at BIDMC (Beth Israel Deaconess Medical Center).  Essentially members give comments/suggestions in an effort to improve the hospital and patient care.  Being the all too seasoned patient that I am at BIDMC, I have many suggestions.  Having gluten-free food available in the ER for those with Celiac Disease so we don't have to endure a hunger headache or eat the regular food.  Extending the hours of Health Care Associates (HCA), the primary care office to include weekends and later weekday hours for those with colds, urinary tact infections, ear infections, belly pain, etc so they can be treated faster and not wait in the ER for hours on end while risking spreading their illness to others.  I also think the kitchens for inpatient food service should stay open longer, at least past 7pm.  When I was inpatient in November I had been sleeping for most of the afternoon and when I went to order dinner at 7:30, which seemed like a reasonable time, I was told the kitchen had already closed.  For dinner I had a sandwich on wheat bread.  It does not make sense to not be able to receive gluten-free food past 7pm at the same medical center where I was given the diagnosis of Celiac Disease.

Interviews are still going on, but I expect to hear something before the first meeting in September.


After about 10 minutes in my apartment I had to call a cab for my 2:00 appointment at Spaulding Rehab, also in Boston for a second opinion regarding the Baclofen Pump saga.  The taxi was late to arrive and I arrived at Spaulding at 2:17.  (I would have taken the T, but I didn't know exactly where the orange line T stop was in relation to the hospital so I decided to play it safe and take a cab.)  Thank goodness the doctor was running behind or else I might have to reschedule.  Normally I would not mind rescheduling, but since I have the Baclofen trail in PA next week, getting another opinion post-trial would be backwards.  I waited for about an hour before I was seen.  Thank goodness for my Kindle.  Long story short, I really liked the doctor and he agrees that a trial is a step in the right direction.  Hearing Dr. L describe the abnormal muscle tension in my left leg and foot using spasticity and dystonia, words that I have always used myself to describe it, but words my neuro at BIDMC always challenges and refuses to use made me realize how stressful the doctor-patient relationship is.  I see my neuro at BIDMC on 8/17 and if he has not changed his ways, he will loose me as a patient.  Dr. L gave me his email address and I will write to him during the trial in PA.

I need to have two doctors and two rehab hospitals managing my care because even though I spend most of my time here in MA, I still go to PA every now and then because my parents live there.  If the trial works and I like the results I get from it, I will likely get the pump implanted, but I would rather feel comfortable with the doctors who manage my care in both states before I have life changing surgery.  I asked Dr. L if they implant Baclofen Pumps at (MGH) Massachusetts General Hospital, but he said only (BMC) Boston Medical Center and Brigham and Women's Hospital implant pumps.  If the trial works and if I then choose to get the pump in MA, I would likely get it at Brigham since I have been there about three times for appointments.


I left Spaulding at around 4pm, called a cab and went straight to (CHB) Children's Hospital Boston.  (It only occured to me just now that I spent the entire day in a hospital.)  While these past few weeks have been crazy from the Child Life conference and monumental fall in AZ, to the wedding in PA, and the various appointments I had in Philly, I haven't been able to volunteer.  This coming week I am leaving for PA for the trial in Philly and a visit to Pittsburgh to tour Children's Hospital Pittsburgh and meet with the child life director.  Even though I volunteered 4-8pm (I typically work from 2-6pm), it was nice to be back in my element after being away from it for awhile.

Career Fair, Books and Upcoming Events

One of my first stops at the career fair was Children's Hospital Boston's table.  (I thought this would be a good start since it's hard to feel intimidated when one of my "employers" on my resume matches one out of the many institutions represented at the fair.)  After approaching the table, I greeted one of the representatives and explained that I had been a volunteer at CHB for close to 5 years, and my goal was to become a Child Life Specialist.  He learned through my responses to various questions that I had applied twice to the Master's Child Life program at Wheelock, but was denied.  I also told him how I was advised by the career education center at Simmons to gain some administrative skills because that would help me a great deal in the job market.  (I forget the sequence of events exactly because I was rather nervous since this was my first career fair.)  He asked me more questions and inquired about my roles and responsibilities as a seasoned volunteer on the inpatient unit.  When he asked if I had applied to jobs at CHB before, I told him I had, but never got further as far as an interview was concerned.  He offered to look over my resume even though they were not accepting them to see if he could offer me any suggestions.   After a careful look over, he handed it back and told me it looked very strong, strong enough in fact for an Administrative Associate I position, a step or two above an Administrative Assistant I.

I was pleasantly surprised.  After submitting so many resumes and applications to CHB without response, I thought I was worthless as far as employment goes.  It took a lot for me to contain myself and not cheer, but only smile and and say thank you.  I felt like I had been hired on the spot.  After learning the physical location of CHB HR, I made a mental note to visit tomorrow.  (I have always called, assuming they were in the main hospital.  I have also never had a real reason to visit the department in person until now.)  

I called my supervisor at CHB yesterday and left a message on her cell hoping to meet with her sometime this week, but it looks like it will have to be next week because she will not be in on Friday when I volunteer.  I really need to talk to her and pick her brain about Child Life practicums/internships and if I could do something independently at CHB.  


Also, another section was created for the online Medical Terminology course at BCCC so I am now registered.  Initially I though it began on the 1st (today), but thankfully it begins on the 6th so I have some more time.  I have the book from the last time I attempted to take it so I don't need to worry about rush delivery of a textbook.  


Speaking of books, I just received Child Life in Hospitals: Theory and Practice and Create Your Own Blog: 6 Easy Projects to Start Blogging Like a Pro.  I ordered Child Life because I have heard it is the "bible" for Child Life Specialists.  I also ordered Blog because I really want to make the most out of this.  I could have ordered the Kindle format, but when it comes to textbooks and manuals, I prefer to have the actual book so I can highlight and tab to my heart's content.  I also recently started Eat, Pray, Love although I have yet to finish The Female Brain.  I guess I really need to step up the reading if I hope to hit my goal of 10 books before summer's end. 

On Sunday, the UMDF (United Mitochondrial Disease Foundation is having a float at the 4th of July parade in Chelmsford.  I have a voice lesson on Monday and hope to meet a mito friend friend from Ohio who is seeing a doctor at Tufts.  I will be going home on Wednesday because Allie will be in NC July 8th-15th.  I also need to stay infection and Advil/Motrin free from Wednesday on in preparation for the Baclofen trial on the 12th.  Technically, the trial is the 13th, but I will be admitted on the 12th for baseline observation, and then I should be discharged on the 14th after the trial works its way through.  I will receive 50mcg of liquid Baclofen and the idea is it will relax my muscles better than oral Baclofen ever could without making me sleepy.  However, Baclofen delivered through the spinal fluid can cause other problems since it does not exclusively target my muscles.  It can affect other organs like my bladder and intestines, but obviously there is no way to know what the effects will be until we do it.  If there is no response whatsoever, my doctor and I will try 100mcg at a later date.    

Arizona Tomorrow...

Today was spent mostly lying around the house with a rather large knot in my intestines. Tomorrow my mom and I are flying to Arizona for the Child Life Conference and for whatever reason, I am nervous. I attended the conference last year when it was held in Boston and had a great time, but I guess perhaps it is the circumstances surrounding this conference that make it more important than it was last year. This year, I hope to get my name around and distribute some resumes. Depending upon who I meet and come in contact with could, in essence. define my plans for next year.

My mother called a friend of hers, which led her to call and speak with the Child Life Director at St. Christopher's Hospital for Children in Philadelphia. After a brief conversation with the director about my educational background, the director decided a good next step for me would be a practicum, which as far as I understood it, between a volunteer and an intern. Unfortunately, practicum hours not count towards certification, only internship hours count. Eh, I'm not complaining as long as I am stepping foreword and in the right direction. My mother and I will meet in person with the Child Life Director at St. Chris's next Tuesday. In Boston, I have the CLC's Directory of Child Life Programs which is essentially the bible if you are looking for practicums or internships and are not currently involved with an educational program for Child Life. The next deadline for practicum applications is Sept 5th for January start. I will likely at the very least apply to the child life practicum program at St. Chris's and CHOP (The Children's Hospital of Philadelphia). As far as I know, Children's Hospital Boston (CHB), where I have volunteered for nearly five years does not offer internships/practicums to those not in an educational program, but I will learn soon enough.

Tonight, I went to my best friend Allie's house to watch Glee with a bunch of friends I went to elementary and middle school with. It was so nice to hangout with them because it seems like no matter how much time has passed between when we last saw each other it is really easy to pick up right where we left off :). About four of them, Allie included, will be moving to Boulder CO in August and I am really considering joing them, provided I can find some sort of work/child life related activity for me to do out there. If I have success in that realm, I will then need to investigate the medical care and the feasibility of obtaining it out there since I will obviously need to uproot 90% of my care should I move. Oh, the complications of having something chronic...

I am feeling the winds of change... I just wish they were blowing me more strongly up north back to Boston instead of swirling around my home town... Only time can tell....