Wednesday, January 29, 2014

Bumps in the Road Update

Does this feel familiar to you?  That road we started on with an ideal plan in mind, straight towards our life goals?  Only the road is suddenly blocked and the challenge of climbing that hill becomes the new goal.  Then there are the dips and storms and what may seem like oceans to cross.

Throughout this journey I've found myself at the top, seeing the light shining from the stars, and I've hit rock bottom when I thought things couldn't possible get worse.  No matter where life has taken me though, I've always found a way to rise above.  And so the bumpy road continues...

If you don't already know, I've had a PICC line for about a year that, via IV, supplies my body with nutrition and calories I cannot seem to take in enough of orally.  Even when eating as much as my stomach could handle, it wasn't enough to maintain weight, even when the rest of my body seemed to be functioning well.  Unfortunately, these type of lines (usually placed in the upper arm) don't last and eventually need to be replaced.  Tomorrow I will be getting a Hickman placed, which is done somewhere in the upper chest.  After talking with many others who use TPN (total parental nutrition), this seems to be the best option to provide me with the active lifestyle I hope to have.  It is an outpatient procedure with conscience sedation so I will only be at the hospital for about 4 hours.  I've heard it will be sore for a few days to a week but once healed I can resume normal activity (don't want to go too long without my yoga practice!).

Coming from someone who wants nothing more to share positive and inspiring stories and tips for living with GP, it has continued to be difficult to update with so many challenges lately.  I won't lie, it hasn't been easy as a lot of you can relate to.  We just want our lives back, to be able to get through the day without pain, nausea, fear, etc.  However, I'm not giving up and don't plan on doing so anytime soon.  If my life requires TPN then I will make the best of it.  My nurse has a patient who has been on it for 20 years (since he was 25) and runs marathons!  Other stories include people who work and travel and raise families.

Keep on climbing and pushing to find out what can give you the best quality of life.  Most don't require such drastic measures as TPN (and if you do then I encourage you to contact ThriveRx, a wonderful and supportive company with compassionate nurses/dietician's) so it may be just finding the right team of specialists, supportive friends, foods that settle best, acupuncture, stress management, gastric pacemaker, etc.  If you find yourself facing many bumps in the road, just don't give up.  I refuse to.