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.  

       

Hope

Over a month ago, I had a really bad week which began with allergies, but turned into more of a cold and ended with my first trip to ER for an asthma flare.  Prior to this, Asthma had always been a diagnosis that had been followed by a question mark because some of my doctors were sure I had it, but others looked at me like I had three heads when I gave my history of medical conditions.

I haven't felt the same since that week which is quite frightening.  Having Mitochondrial Disease means it takes more of me to fight illness, but I have never felt it prior to that week.  I had the achy variety of the flu in February and "bounced back", but that has yet to happen with whatever I had two months ago.  It felt like someone had opened a metaphorical valve and let out all the energy made by my mitochondria.  It is an awful feeling.

Since this post is overdue, I'll cut to the chase.  Last Wednesday I had my second appointment with my new GI at Massachusetts General Hospital (MGH).  After some small talk, he read Nutrition's note from two days prior and asked point blank, "what do you think about a feeding tube?"  I was caught off guard, but wasn't surprised.  I have been thin all my life, but recently my appetite and everything with it has taken a nose dive.  My day-to-day status changes dramatically for no rhyme or reason.  Some days I wake up and wonder if I'll be able to stand up after placing my feet on the floor.  Once I stand I wonder how many times my shoulders or the rest of me will hit the wall before I make it the five feet to the bathroom each day.

My GI understands Mito so he understands the impact nutrition, or lack of it, has on those with the disease.  The plan is for me to get supplemental feedings while I sleep (or late at night before bed) so I can get more calories than I currently am during the day.  My g-tube will not be used as my sole source of food, but it will help me get more calories and feel better overall.  I currently weigh 100lbs which is not good for someone who is 5' 5".  Its not as simple as just eating more because even when I try to eat like "normal" people, I feel full sooner than I have in the past.

My mito sister Chelsea wrote more about feeding tubes in her blog in a post very appropriately titled No Longer Starving.   

I will have surgery on 9/12 to put in my g-tube.  My g-tube will go on the left side of my belly above my Baclofen pump.  It will go in laparoscopically, which means I will have general anesthesia and will have an incision above my belly button for a scope with a light and camera at the end so the surgeon can visualize my belly to help with tube placement.  Another incision will be made for the tube itself.

While surgery is painful and certainly not desirable, I hope this will be the beginning of something that will make me feel better overall, not just increase my weight. 

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