T'was the Day After My 25th Birthday

My birthday was on December 3rd, so it has been more than a few days since, but for the purposes of this post, that's insignificant.  I need to be more productive this year.  I feel like a greater part of the past two years since graduating from college have been a bit of a waste.  I need to get out of my parent's house so I can exercise my free will and express opinions without being trampled on.  Today, my dad totally convinced me to go out with him and to do errands which involved listening to guy who makes marmalade out of tomatoes, yup....:/.  Right now, my life is seriously lame.  I have great friends who are basically family, so that is not the problem.  The problem lies in that two night ago at my parent's Christmas party, I responded with "I'm a hostage" to the question, "What are you doing these days?"

The past year included two surgeries, Baclofen pump revision and G-tube.  I also had to move virtually all of my medical care from one hospital to another and despite all of the headaches, the move has been well worth it.  There are many doctors out there, some are good, but only a few are great!  Some only help maintain your baseline, but others actually try to improve it.  Some just say, "I don't know" to every question, others try to challenge that and look for a cause.

Perhaps my most important lesson this year was that everyday is a gift.  Sure, we've all heard this one in some way, but have you ever really thought about it.  This July, a little friend of mine Eithene, passed away from Mitochondrial Disease.

Me and Eithene

Loosing someone you care deeply about is very difficult hard, but when that person is lost to the same disease you have, it is very hard to not take pause and live life differently from that moment on.  I will never forget the weekend she passed.  I have mourned before, but never so deeply.  Mitochondrial Disease has no compassion, so while I knew of others who lost their lives, Eithene was the first I had ever known personally.  This is when it began to hit me.  Eithene and I both have mito, but we are on very different paths.

My Mito Sisters: Chelsea, myself, Sarah and Stefani.

This year has been difficult for my mito sisters.  One of us had a 108 fever in October, another has faced one issue after the other, and yet a different sister had a PICC placed.  Standing by my sisters during difficult times has me wondering, why am I here?  What do I have to offer?  Clearly, there must be a reason why with all of the "could bes", I'm still here and doing well.

Oh, and for all who are wondering about my Bucket List, it's still there.

1. Touch an elephant
2. Sing Handel's Messiah in a chorus
3. Attend a taping of Saturday Night Live (New York City)
4. Go to the Kentucky Derby 
5. Give life (donate blood, bone marrow, have a baby)
6. Go to Ireland
7. Visit Beethoven's grave (Vienna)
8. Attend a live performance of Beethoven's Ninth Symphony, preferably in Symphony Hall (5/24/11 in Philadelphia with the Philadelphia Orchestra.)
9. Go to the hairdresser and give them free reign 
10. Go to a fancy occasion without my feet hurting
11. Get a job as a Child Life Specialist
12. Go to the World Series, preferably, in Boston ;).
13. Attend a performance of The Holiday Pops in Boston (12/20/10)
14. Go on a cruise
15. Serve as an extra in a movie
16. Read two books a month for a year
17. Complete a 5k Walk
18. Go horseback riding, again
19. Take ballroom dance lessons
20. Perform Moonlight Sonata, again
21. Swim in the world's largest swimming pool (Chile)
22. Visit a rain forest 
23. Go to Australia
24. Go rock climbing, again
25. Go skiing, again
26. Ride on the Orient Express (train)
27. Sleep in an overnight train
28. Ride The London Eye, again
29. Name a star
30. Visit The Four Corners (UT, CO, AZ & NM)
31. Take a shower, or at least wash my hair in the rain
32. Reach 20 followers on my blog
33. Be recognized for my blog
34. Distribute Halloween candy (yes, I have never done this)
35. Watch the pony swim from Assateague Island to Chincoteague Island
36. Visit Hollywood Walk of Fame
37. Attend a live performance of Mahler's 8th, Symphony of a Thousand
38. Be involved in a clinical trial
39. Try a carmel apple
40. Put a star atop a Christmas tree

For those paying attention, #39 and #40 are new.  Better yet, I did them last week in Boston!!  Even better, each was done with a sister as a witness!!  

Stefani's Tree

I ate a carmel apple with Sarah at MIT, but alas I don't have a picture.  I think this means I need to do it again so I can obtain proof.  

       

What Mitochondrial Disease Means to Me

Unlike most people, the first word that comes to mind when I think of Mitochondrial Disease is friendship.  This may come as a shock since this disease does not have a cure, nevermind any proven treatments.  I feel if it wasn't for this disease I would be a different person all together.  My personality would probably be different and I may be interested in different things.

Because of Mito, I have three mito sisters...

Chelsea, myself, Sarah and Stefani after sledding in February(?).

I know for a fact that if I did not have Mitochondrial Disease I never would have met my mito sisters.  I knew Stefani on Facebook long before finally meeting her at last year's UMDF (United Mitochondrial Disease Foundation) Walk-a-thon where I also met Chelsea.  Ironically, Chelsea and I used to live within 4 blocks of each other, but we didn't actually meet unit well after we each moved.  I met Sarah at a mito mother's son's birthday party.

While I received my diagnosis almost 10 years ago, my sisters were only diagnosed in the past year and a half.  Mitochondrial Disease has many different symptoms and combined we probably have all of them.  Three of us are tube fed and three of us have a PICC/port/Broviac, but only two have both.  Since there is so much overlap, rarely is there a time where I have a symptom or question and they have no idea what I'm talking about.  (This article has some other information about Mito and how it has influenced our relationship.)

Better yet, when I need a new specialist who is familiar with Mito, I have three experts who I can count on for advice.  Since there are few doctors who understand Mito, 90% of my doctors also know one if not two of my mito sisters.  The only doctors I don't share with my sisters are PCP, Pain Management (Baclofen pump), and Neuro (CHOP).  All of the others I see regularly are shared, which can make appointments interesting since sometimes one or two of my sisters may also have an appointment or two close to at the same time as my own.  Random meet-ups can me quite frequent, but most of it is up to chance.  One week about two months ago, one of my sisters had the same number of appointments as I did, including two with the same practitioners, GI and Nutrition, all at the same hospital (MGH), in the same office.  I think I saw her three times, and every time is as good as the last if not better!

Sometimes just one of us is inpatient, sometimes two, rarely three, but about two weeks ago, all us were in the hospital at the same time.  To truly understand how low these chances are, consider this;  in my entire 24 years I've only been inpatient about ten times, three of those were in the past year for elective surgery.  My sisters have had about the same number of admissions, but they've been much more concentrated, occurring within the past year.  Initially, two of us were at MGH and one was at Lowell General Hospital.  I was the only one whose admission was planned, my sisters just wound up inpatient at the same time.  At one time, Chelsea was down the hall from me on a different unit, but I wasn't in any shape to visit her, and she wasn't leaving the ICU.  At that point one of us was still free of the hospital band, but that changed when she was visiting me and received a call from one of our doctors to go to the ER.  From then on, we were all inpatient.  

While I never, ever want to repeat all of us being inpatient at the same time, it was comforting to know three of us were under the same roof together but separated by walls, doors, and floors.  Since my mito is mostly stable, I'm used to being the visitor or sometimes a ping-pong ball going back and forth splitting my time between my sisters who are inpatient.  This time, I really wanted to be with them but couldn't not because I was "too busy" or was inpatient myself, but because I had just had the most painful surgery of my life.  My heart was with them, but my body couldn't be.  It was so hard to know the three people who understand you most and in ways parents and non-mito friends cannot truely comprehend are also struggling in their own ways, yet you cannot be there for them.  I desperately wanted to break out of my room to see them, even if only for 15 minutes, but knew that wouldn't go very well if the simple act of breathing caused intense pain.  After all, most would like a visitor who can breathe. 


The day after my G-tube surgery

Stef (with Beast) at LGH

Chelsea (with True) 


While the subject of this post is by no means positive or good, its core is about something stronger than any disease or illness.  Mito can repeatedly ruin our plans to get together, but it cannot and will not break the bond we share as a result.  Yes, I may be living in PA temporarily, but my heart and soul is in Massachusetts with my sisters Chelsea, Stef and Sarah.

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.

4th (and 5th) of July

This year I did something different for the holiday.  Nearly every other year I have spent it at home in PA with my parents and my friends.  On the Saturday before the 4th, we go to The Riverside Symphonia's Concert Under the Stars.  The interesting thing about this tradition is typically people don't ask if you are going, it is expected that you will be there unless you tell them otherwise.

About a month ago, I saw on Facebook that Stefani, a good mito friend of mine was going to be raising awareness of Mitochondrial Disease at a local parade and having a cookout.  I decided to go for the weekend I could at least see Chelsea  and hopefully some of my other mito friends who I don't get to see very often.  I took the Commuter Rail 45 minutes outside of Boston where Keith (Chelsea's husband) picked me up.  I then hung out at the house with 2 children, 4 dogs along with Stefani and Chelsea while Keith and Ralph (Stefani's husband) set up the tent for the pre-parade festivities.  Essentially we made the men do all the work, while we stayed at the house in the holy A/C.  

Later in the afternoon, Stefani, Chelsea, the kids, and I pilled into the car and went to the tent to raise awareness and sell raffle tickets.  The raffle tickets went to two box seats a Red Sox game and two nights at the Publick House.  For an early dinner I had two hot dogs on a bun with mustard.  I have Celiac Disease so I am not supposed to eat wheat, but considering this is summer and my first hot dog of the season, I decided to go for it.  After about three hours, I got tired, not to mention hot and Stef suggested I go to the hotel so I could rest up for the parade the next day.  

This was the first time I had ever slept in a hotel room by myself.  I got to choose which bed I slept in.  This is the first time in many years I had that choice.  Nearly every other time, or should I say, EVERY time I stay in a hotel with my parents, they take the bed by the window.  Oh, and the television.  If it isn't baseball season, we'll watch football, and if it's neither of those it'll be The Weather Channel, much to the delight of my mother and I.  My dad needs to realize that there is more to television than sports.  By the time he relinquishes the remote, my mother is either asleep or close to it.  After I get the remote, I am beyond relieved, now I can watch real television.  Usually either TLC, USA or TBS.  Typically about twenty minutes after I gain control of the remote, the snoring begins.  My dad does the deep "bear" snore, and my mom does the sighing snore.  When both of them are at it, I don't sleep well at all.  So, you can imagine my excitement when I was in this nice hotel without my parents.  I slept like a baby and watched what I wanted.

The next morning I woke up at around 7am, ate breakfast in the hotel lobby, went back to my room to get my bags and checked out just as Keith arrived to pick me up at 8am.  I think that was the FIRST time I got up that early, was ready and had eaten breakfast BEFORE my ride came to pick me up.  Stef drove me, Chelsea and the kids to the school where the floats were lined up.  We sat in the car to avoid overheating since that can be dangerous for those with Mitochondrial Disease.  

During the two mile parade, we all sat on the float.  I nearly fell asleep because it was so nice and warm, not to mention I only got 6 hours of sleep.  (Yes, I stayed up watching TV.  So much for going to bed early.)  After the parade, we all returned to the same tent we were at yesterday.  Stef, Chelsea and I got really hot during the parade so we went home about 30 minutes after returning to the tent.  We felt much better after returning to the air-conditioned house.  After Ralph and Keith came back, Crystal and Tapas came with their brand-new baby.  My friend Katy also came, much to my surprise.       

When I was eating dinner at Stefani and Ralph's it hit me that I really love my mito friends and that summer truely is upon us.  I look forward to seeing them again and since the Commuter Rail is easy and not too expensive, it will be easy for me get out there.  I just cross my fingers I can find an apartment and a job that will allow me to stay in Boston.