Oct 28, 2017 Latest post:
Apr 19, 2018
February 5, 2013 was a day that changed the world for Bill and I. While living with an undiagnosed condition called gastroparesis, I became so dehydrated that my heart was having a hard time pumping blood up to my head and I blacked out. Unfortunately I was in the room of the house with the most hard surfaces and edges....the bathroom. Fortunately Billy and Tigger heard me crashing, as I landed on my head and neck. I suffered 2 Traumatic brain injuries that day. Life since then has been very different and very difficult. I've done a lot of therapy, including a 2 month inpatient stay at Bryn Mawr Rehab, and the home therapy and then outpatient therapy. Since I am an occupational therapist by trade, it has been hard to live on the flip side of the coin!
As the TBI stuff was going on, I was finally diagnosed with a rare condition called Gastroparesis, which means paralyzed stomach. GP, as we will fondly call it is a bear! I've been nauseaus for almost 5 years now with no real, lasting relief. GP has other symptoms such as vomitting, feeling full after just a few bites, malnourishment, weight gain and loss, bowel issues, severe pain, extreme nausea....it goes on. This is not a curable condition at this time, we need more research! So, in the trial and error of treating GP, I'm now the proud owner of 19 scars on my belly from various surgeries, feeding tube etc. I currently live with a PICC line in my right arm and I receive daily hydration and some medications through it. Unfortunately anything like a PICC brings great risk of infection, and I have been septic twice. This January I developed a nasty skin condition around my Picc. We still aren’t sure if it was an adhesive allergy, an allergy to something they use each week to prep and sterilize my skin or what. But, my dr and nurse decided it was time for the 11 month Picc to come out of my left arm and switch over to the left arm. In the past 5 years I have had 1 port, 5 Picc lines and 2 midlines.
After having outpatient therapy at Riddle Hospital, I went to the Jefferson Concussion Clinic at the Navy Yard and met a great physiatrist/neurologist who had many out side of the box things for me to try. I also attended OT and PT there for over a year. I also did weekly vision therapy, Interactive Metronome which helps to reset the timing in your body neurologically and has an enormous positive impact. as my body would allow, Listening therapy which works via bone conduction in your body via certain types of very specific recordings. Since my pyloroplasty surgery 12/2016, I haven’t had the strength, alertness, medical stability etc to attend any therapies except for meeting with my talk therapist and even that has been disrupted.
So now that we have been dealing with this for over 4 years, and was treated by a GI specialist at Jefferson University Hospital, I'm in a sort of holding pattern right now. There aren't more viable options for me. I've done everything they have recommended to me, but still no relief. As far as the Tbi goes, healing from that has been greatly impacted by my lack of nutrition and extreme fatigue. Both of these diagnoses come with a whole assortment of secondary diagnosis that have great impact on the quality of my life. It kinda feels like the world is passing me by and I'm stuck in a rut.
I do believe in miracles, and in the One who could perform a miracle. There is no way I could cope with the position that I am in without the everlasting love of Christ. I trust in Him with all my heart, and I believe His promises are true. I also believe that He sent His Son, Jesus Christ to earth as a baby who grew up and then died for my sins, rose again 3 days later, and because I accepted this gift and trust in God, my name is written in the Lambs Book of Life and that I will live in eternity in heaven one day!
Do I miss the old Wendy? Of course I do! God had given me a wonderful life.....and now I have to do the work to discover the new Wendy. I'm not so sure about her yet, but some day.......
Please pray for Bill and the rest of our family as we work together to take care of me the best way we know how!
Thank you for your prayers and support! Love, Wendy