Here I am, writing to you in the middle of flare because I failed to notice "spices" included in the ingredients for a bag of chips (seriously, I usually meticulously check those things), doing a quick check-in before D-Day occurs for me this week. Before I go into those details, let me backtrack to a few positive events that have occurred since my last post.
I have been unable to have a real vacation in several years. Every time we have tried to book one, a family member has passed away or I have landed in the hospital (yes, this has seriously occurred on about 6 occasions). I also do not have the opportunity to take one either, due to the fact that I never have any leave available, as it is always exhausted for surgeries and hospital stays, and with all of my medical bills, it’s often not fiscally possible either. Despite the leave and financial situation, my husband and I planned for me to take an unpaid leave trip to Colorado to celebrate our 5 year anniversary in May. COVID hit, of course, and we were unable to take that trip (we are still planning on doing this, however. I want to go out west and see what the lack of humidity does for my hair).
Luckily, my family planned a cabin getaway for the week of the fourth where we could stay secluded (COVID-safe) and just have a change of scenery where we were all together. This involved me, my husband, Jackson, my two step-sons, Cole and Connor, and my sister and her husband, Jamie. It was an incredible time. I have to say, Cole and Connor taught me so much about how to be a mother and I love those boys with all my heart. It makes me so unbelievably happy to see how my parents have fully embraced them and how they’ve truly become a part of the Burke clan from day 1. We had a great time all together and I have seen Connor become, quite possibly, the most competitive corn hole player on the planet (look for him on ESPN one day – I see those competitions played repeatedly lately).
I had two pain-free days after a particularly rough June. Thursday and Friday were amazing. We went on a hike and got to enjoy the lake, even including a rock slide (minus Logan and Cole – calling you both out!). I had so much fun enjoying quality time with my family, staying up late playing games, listening to good music, and laughing so hard I had tears in my eyes. I brought my own food of course, and while I missed out indulging on the tasty dips, desserts and dinners that everyone else ate, I still had the best time. I have found I can enjoy my bland food every now and then and excites me when I do. I just have to dress it up a bit and be VERY careful when I eat greens as it does not balance well with my ostomy and gastroparesis diet.
*pictured spring mix in olive oil and feta with chicken thighs in parsley and basil with "ranch" (aka cottage cheese with basil, dill and parsley (my only approved spices)
July 4th, I decided to throw caution to the wind and indulge a bit. We wanted to play a drinking game (Ring of Fire) with my parents and there was no way I wanted to miss out. I was already starting to hurt the morning of Saturday because it had been two days since I had my last bladder injection, but there was no way I was missing out on playing Ring of Fire with everyone else. While it sounds excessive that I need two injections a week, I can always tell when the injections start to wear off on or after day two as the pain quickly begins to return. By that night, I was already in tears. I stayed up all night crying and struggled to even pack the next morning because I was hurting too much to move. Thank God I had an injection scheduled for that Monday morning, because I was unsure how I was going to keep making it.
I had an appointment scheduled with my urologist Tuesday regarding the insane level of pain I’m having to deal with on a daily basis. My diet can’t possibly get any cleaner, I’m taking the proper medications, but nothing seems to make it improve. Her next suggestion was the hydrodistention surgery, which is something I have consistently said I don’t want. However, I have finally caved. I am having it this Friday, July 17th. She advised it could send me into worse pain, it could cause relief; it could help for 2 days, it could help for 2 months, it could not help at all, or it could make things worse. It’s a huge gamble. For those it helps, she repeats the surgery every few months and injects steroids into the bladder to try to treat it. She wanted me to switch up some medication and to continue to speak with my primary care physician regarding those. Again, I can’t tell you enough how much I adore my primary care physician and his entire team – they are truly the best and I am SO grateful I have him as my physician.
The same day, I had a virtual appointment with my Emory doctor regarding the GPOEM surgery to treat my gastroparesis. This surgery is done endoscopically, so I won’t need to be cut open (finally!). It is done on a Thursday, involves an overnight hospital stay and I’ll be right back to work on Monday. There is a high success rate of this in regards to gastroparesis patients, so I am very optimistic about this procedure. I will be having it on August 6th (perfect timing in regards to my job). I’m not nervous about this at all, actually. I’m very optimistic; it’s just odd that I haven’t had time to think about my GP while having to deal with the bladder issues. The bladder problems have taken a front seat due to the pain and I’ve just been managing the GP with medication and eating small meals/less frequently.
So, I ask for your prayers on Friday as I go through the hydrodistention. At the very least, I hope it does not make things worse. I’m looking for anything to help at this point, but terrified for a procedure to set me back any further.
I have gotten a little better at talking to God, but still not talking to him about myself. I just can’t get there. Oddly, my grandmother dying helped me begin to talk to him again. Her faith was so strong, and you would think that her dying would make me angrier, but it gave me reason to reach out to him again. Just not quite there in asking for his help for me from myself.
In the meantime, I’m thankful for every good day and the loved ones in my life.
