Searching for the Balance Between Remaining Positive While Being Honest

To be completely honest this post has been 4 months in the making. It probably sounds insane that it has taken me this long, and I know that all of you have been anxiously waiting to learn how I am doing. I am sorry for the wait, but I am so appreciative of your prayers and sweet messages. I especially love ones from my nephews, nieces, and the kiddos that were in my 3^rd grade class this past year. Thank you so much for continuing to encourage me through this journey!

DIARY OF A TUBIE WARRIOR

When I first began sharing my health journey through this blog I didn’t expect to find so many people sending me messages, but I’m in awe… I receive encouraging messages from all of you. J Many of you have shared my story to help spread awareness for not only the diseases that I have but about chronic and invisible illnesses in general.  Some have sent me research and ideas to help with my health and I’ve also been connected through social media with some AMAZING people who have similar cases. What surprised me most has been the number of people messaging with questions about my diseases, symptoms, tests, doctors to see, etc. I love being able to answer all of your questions whether you’re going through something yourself, you know someone who is, or if there are things you want to know more about. 

First, please remember that I’m not a doctor so I can give you facts, personal experience, ideas on what to watch for, and even to just be a sounding board for you. I want you to continue messaging and asking questions but I decided to create an Instagram account called, “Diary of a Tubie Warrior” (name is because of the creativity of a dear friend). I’m also going to begin doing weekly vlogs about each of my diseases, answer questions, and give weekly updates. Feel free to follow my journey as I share more about my day to day experiences, BUT no worries! I will still be updating this blog for any family, friends, and others that would like to be updated more personally about all of this.  I’m nervous to begin vlogging, but I feel that right now my job is to teach others about this so that hopefully they will be able to get answers and solutions faster then I have.

POST-OP MALS SURGERY

The surgery ended up being more complex than expected.  He had to remove a lot of scar tissue, cut out a big piece of my median arcuate ligament because it was abnormally thick, removed a lot of the plexus nerve, miraculously found that I also had GACS (gastric artery compression syndrome) so he fixed this and removed damaged nerve in that area as well, and then replaced my j tube. Overall the surgery was a success though.

I was in recovery and ICU for almost 12 hours after surgery because they couldn’t get my pain and blood pressure under control. Once stabilized I spent the first 5 or so days on a pain pump, they continued my feedings and meds, but I was also being transitioned to oral liquids and then soft foods. I was released after 8 days, but nothing had changed. The pain from eating hadn’t gone away and I wasn’t keeping down much either. We weren’t too worried because we’d been told it could take a couple months before I’d notice any change.

Over the next month my incision opened and had to be closed, I had sutures coming out from inside, ended up with 3 types of infections, and went through 4 rounds of antibiotics. We continued to watch for any changes as I continued the recovery process but I still struggled to keep down much of anything. After about 3 months we began wondering if we had done the correct thing in having the MALS surgery. Other symptoms began getting worse as well so coming to see my Utah doctors was the best option.

OTHER SYMPTOMS

*My hearing was retested and my left ear is now 96% gone permanently and the ringing in that ear is constant.  My right ear was also beginning to have problems while in vertigo as well as ringing.  All that they were able to confirm was that it had something to do with my central nervous system and that I needed to see a specialist ENT in Chicago.  It's scheduled for January.

*The vertigo is now happening daily, I wake up in vertigo, I can be mid conversation and it will hit, the meds no longer work because of the severity of the vertigo, and everything is always blurry.  This also came back as a central nervous system problem. 

*With the vertigo the migraines are also now constant.

*My ability to multi-task has become really difficult, my memory blanks out at times, the passing out happens daily, and many other things in the brain realm right now.  Once again they are all central nervous system related.

*The left side of my body no longer has refluxes and there's numbness and tingling in my left arm and leg.  

*My feedings were now causing intense pain in my lower abdomen and I've now been using Kate Farms Peptide 1.5 formula.  This formula is still causing severe pain, but it has more calories per can than other formulas so I'm able to not do my feedings for as long each day.  For the time being this is what I'm going to keep doing.

For some reason everything was happening on the left side of my body so another brain MRI was done.  They didn't find a tumor, which is a good thing, but they did notice that the left part of my brain is sagging.  This is why they are also having me meet with a near surgeon in Chicago.

UTAH BOUND

CSF LEAKS

I came to Utah to meet with my internist.  He's the one that has helped diagnose me and get me through the past 1 1/2 years. Our 2 hour appointment turned into a 5 hour appointment.  Once he saw me he realized how severe everything had gotten and so he and 2 other doctors helped get all of the testing that I need to have done over the month of December.  He's also began contacting specialists across the country to get me into them ASAP.

I found out that all of these left side symptoms, the worsening vertigo, memory, migraines, etc. were all due to my CSF leaks in my spine.  He tested 11 points on my left side and then confirmed i had all 11.  I didn't even realize that the left side of my face was sagging as well as numb. For now thankfully all of the symptoms are on the left side, but it could begin spreading to the right side.  Thankfully we know what to look for now and I have an amazing doctor who's doing all he can to help me through this.

Over the next 3 weeks I will have one blood patch done each week on my spine.  He knows this won't work, but we have to prove it won't before I can head to the CSF Neuro surgeon at Duke.  He's already been in contact with the surgeon so we hope I'll be able to get into him soon.

CSF & MALS

From the research that my internist and a few MALS surgeons across the country they've found that those that have both are the ones that end up needing to have a MALS revision surgery or the more extensive original MALS surgery.  Yesterday I had a CTA/ultrasound done for the 3rd time to confirm that I am still having MALS issues.  On the 20th I will have another celiac plexus nerve block done on my spine to see if it takes away any pain in my upper abdomen.  All of these results will be sent to the MALS revision surgeon in Connecticut.  So I will be going there after Duke.  Hopefully once they've dealt with both, some of the left side issues will improve as well as the intense stomach pain whenever I eat or drink anything.

G TUBE SURGERY

Today I will be heading to IMC to have a g tube placed back in my stomach.  This time he will be placing a thicker tube and they're going to keep it open to allow my stomach to decompress.  Normally this would be a simple procedure, but with everything else it's going to be a bit more risky so I will be admitted post surgery until I'm stabilized.  I'm a little nervous, but I am also excited to have this back in because it will help with my vomiting and intense pain all of the time.  My family will keep everyone updated on how I'm doing post surgery, and I will once I'm able .

TPN

As for the intense pain when I do feedings they've found that the paralysis has spread through my entire small intestine.  Once I'm back to Indiana I will be admitted to the hospital and they'll transition me from feedings to doing TPN through my port.  This will be how I receive my nutrition and will allow my stomach and intestines a break.  I will also continue doing 2 saline bags every day to help keep me hydrated.  They have also began transitioning some of my meds from my feeding tube to my port.  Hopefully by doing this my stomach and small intestine might have a chance of regaining some motility in my digestive tract. 

It's possible that the spreading paralysis is due to the CSF leaks and that once again it is central nervous system related.  Right now my family and I are just trying to take it one day at a time.  I was terrified flying here alone even though I had help the entire way.  I'm used to my parents and brother helping me if something happens to me while in the airport or flying.  My mom reminded me that I'd have friends and family helping me along the way.  She also told me to focus on the people that I would get to see while I am here.  

THANK YOU

It's been so amazing to get to spend time with some of my good friends in northern Utah and once I'm out of the hospital from surgery I get to head down to what I still consider my home. I can't wait to see my family, nephews and niece, and the amazing students that I've missed every single day.  Every day I wish that I could be doing what I love so much, which is teaching amazing children.  I know that I will have tubes for the rest of my life and I'm coming to terms with that.  I can teach with tubes and live without being able to eat food very often or at all, and that is why I will go to Duke, Connecticut, Chicago, and possible Michigan.  

Thank you for your prayers, your messages, letters, calls, your friendship, and for making my world just a little bit brighter.  It's always on the most difficult days that I hear from one of you.  Thank you for lighting my world! I am sorry that I haven't been able to explain until now.  It's been hard for me to process all that has been happening, but I will keep trying my best to keep you all informed as well as continuing to help spread awareness for all of this so that others might be able to find answers sooner.  

P.S.  Sorry for no pictures but  I was in a rush today so I'll add them in the next post.