Its been several months since I have made an update. So much has been going on I just haven’t found the time to write this. Before I fill you in on what’s been going on I wanted to let you know that if you would like more frequent updates you can check out my YouTube channel! I started making videos to raise awareness for my different conditions and we are almost to 3000 subscribers. Thats crazy! I never thought so many people would be interested in watching my videos. So while I will continue to write Blog posts when I can, YouTube is the main platform I’m using to share my story right now.
So now for the long overdue update! Last time I posted I was about to get my surgical GJ feeding tube placed. This was a feeding tube that is placed surgically into my abdomen rather than the one that goes through the nose. I was also having a port placed for my infusions as my PICC line was only temporary. On September 18th I had that surgery. That was the hardest thing I’ve ever been through. When I woke up I was given pain meds that my body doesn’t handle well and I burn through them before they even start helping. By the time I was taken back to my hospital room I was in unbearable pain. I spent the next few hours literally screaming in pain waiting for them to give me any sort of pain medication. You can imagine how painful it was when I woke up and had just had a whole put into my abdomen that now had a very large tube through it. It was excruciating!!!! That combined with my port that was placed in my chest was more pain than I’ve ever felt In my life. It didn’t end there unfortunately. I developed an infection which left me in the hospital for 8 days. Once I was at home it took me over a month to start feeling myself again.
The tube they give you when you first have surgery is VERY big and bulky. With EDS your tissues are very delicate and this tube caused constant pain because it was too big. Luckily after 2 months you get what’s called a button. It is a much smaller tube and is supposed to be much more comfortable! It was for a few weeks and then I started having pain. Around the tube began to swell and get hard to the touch. They couldn’t find anything wrong at the time so we just assumed it was normal. I mean after all, your stomach isn’t meant to have a hole in it! Over the next few weeks the pain became much worse. The day after Christmas we knew something was wrong. My tube wasn’t working and I was in horrible pain. We went to the ER at Children’s and they admitted me for testing. The next morning I had surgery to fix my tube. It had gotten stuck in my stomachs wall and my stomach lining swelled around it. The lining of my stomach was twice as thick as it should been. They took out my button and put in another long tube. lucking it is a nice one, unlike my first long tube after surgery. I started to improve quickly and now my feeding tube is feeling better than ever! While this tube has been a huge pain it has kept me alive now for 6 months and we’ve seen drastic improvement.
During all of this my hip has been declining. I actually had some procedures done on my hip during my port and feeding tube surgery in September. We have been trying everything to figure out whats wrong and why it’s hurting so much. We’ve done PT, injections, an MRI and the results… we can’t find anything. Unfortunately this means there is nothing they can do to make it better, so for now I’m stuck with it. All of my joints are still giving me trouble and I’ve had a few injuries here and there but for the most part they’re staying stable.
Going through all of this is hard. Living everyday in constant pain, dislocating 30-40 joints a day, not being able to eat much, needing a wheelchair, feeding tubes, and IVs is hard! But its made me so much stronger and changed the way I view things. I appreciate the little things I can do. I’ve grown so much closer to my family. My relationship with God has grown more than I can put into words. While I don’t know why He gave me these challenges I know that its for a reason. And I can chose to either be upset about it or embrace it and trust God with whatever comes next. And thats exactly what I’ve done.
I have several tests and appointments coming up that I would appreciate prayers for. We are working to get me back on Growth Hormone shots, so we have a GH stimulation test this month. This will also help rule out adrenal insufficiency which we have been wondering whether or not I have for over a year. We are also trying to find ways to manage my pain and give me a better quality of life. There is so much more but it would take me forever to write it all out.
People always ask us what they can do to help and the answer is just pray! God is incredible and I believe in the power of prayer. Thank you again to everyone who has been supporting me and my family though all of this. We appreciate you all so much. It is wonderful to know that so many people are praying for me and are here to support us.
Check out my YouTube channel for more updates- http://www.youtube.com/lifewithstripes