First of all, thank you for the overwhelming concern and prayers for me, I am completely overwhelmed by all the love.
I thought I would share what has been going on behind the social media "facade". For months I have been really struggling with my health. I have been told by some people in the past to keep social media light and business appropriate, that is one of the reasons I haven't shared much about my personal life on our Valere Rene Handbags social media platforms. I have been trying to hide the way I have been feeling from not just you but some of my family just because I have become even more of a private person since starting Valere Rene than before. I feel like my life has been on display and everything needed to be perfect, but that has not been the case.
Since my health issues in 2011/2012, certain things with my health have never gone back to "normal", but I had become used to managing the issues with my doctors and additional medications. I was still dealing with asthma issues that I didn't have before and my digestive system has never been the same since back to back abdominal surgeries during this time and then again another surgery in 2016 to close a surgical hernia because I didn't heal properly after the back to back surgeries. So needless to say, I just got used to my "new normal" after the crazy health crisis during that time. The only people I really shared how I was honestly feeling was with my amazing husband, Larry, my girls and my friend and employee, Annette. I didn't even want to share everything with my mom or sister as I just didn't want to worry them. I have been having small managable flairs the entire time we have been in business.
(This photo is to show you the weight I have lost mainly just because I am not able to eat much and the systemic inflammation I was experiencing. Granted I needed to loose weight, I wouldn't wish this type of weight loss program on anyone.)
In the summer, I started feeling more run down but I tried to fight through it for the most part and my girls would help me with daily responsibilities with production, shipping orders and marketing. After Emory was at Children's in August/September I got a cold that within 36 hours turned into bronchitis and an asthma attack that sent me to the ER. Soon after finishing 2 rounds of steroids and a round of antibiotics is when I starting noticing I wasn't able to even eat a quarter of a meal and nausea was becoming more frequent than normal so I made an appointment to see my GI Doctor. He was a bit perplexed on why my labs where so crazy while I was in the ER with the asthma attack. Since I was just getting over a virus turned infection, he started me on a few medications to help with digestive symptoms that I tried but I was just getting worse. I went to see him again, with Larry with me, and he said that he was concerned that maybe the virus had attacked a portion of my digestive track and that he wanted to do a gastric emptying study because he said it sounded like gastroparesis but he needed to confirm with the study. I have upper GI's about every 6-12 months and he didn't want to repeat it since I had just had one 6 months prior.
So here I go in for yet another gastric test. A gastric emptying study is when you are fed something(usually scrambled eggs, oatmeal or pudding) with some sort of radioactive isotope sprinkled on top and the technician takes scans every hour for the first 2 hours and then if you have more than 50% food retention then the test runs to 4 hours. The technician said, "oh these usually only last for 2 hours because gastroparesis is very rare", I said great! At the final 2 hour scan he said he was going to have to have me come back for the 4 hour test because I didn't pass the protocol so I left and came back. This was right before Thanksgiving. At this point I had started an anti-inflammatory diet so I was living on salads, fish, chicken, raw fruits and veggies and limiting dairy, gluten, refined sugars and fats and was getting way worse, I was vomiting multiple times a day, having horrible abdominal pain, uncontrolled reflux, was so weak because I wasn't eating but maybe 500-700 calories a day and was constantly nauseous. I hid all of it the best I could.
The week after Thanksgiving is when my GI Dr. called with my GES results. The test confirmed GP. What usually takes about 45 minutes to an hour to digest(eggs) was taking me over 5 hours to completely leave my stomach hence the reason I was always feeling full or vomiting up food(undigested) from hours before. My Dr. changed up medications including one that I have to order from Canada because it isn't FDA approved.
So this confirmed it was going to be a roller coaster to get this into remission and that's when I finally came to terms with closing the business. I hadn't been able to be up at the studio very often because I was so sick and would go in on my good days to get things cut for Annette to at least keep our popular products stocked the best we could.
The dietary restrictions with gastroparesis are INSANE. Larry and I have been researching and researching on how I could eat without getting sick, it has been a challenge for sure. Luckily I was referred to a dietician for GP education, thank goodness! Everything I was eating between September to the time of my diagnosis was making things 100 times worse. My challenge now is getting my calories in, eating nutrient rich foods that I can absorb and watch my fiber, fat and protein content. I finally got my medicine from Canada and have now been taking that for about 2 weeks and eliminated all the "forbidden" foods from my diet with the exception of an occasional glass of wine and chocolate because what woman can live without those, lol.
So with partnering with my Doctor and dietician I hope I can get this into remission quickly and calm the monster. GP is a disease that you live with for the rest of your life. Patients that suffer from this disease usually end up experiencing temporary or permanent feeding tubes and J tubes because of nutrient absorption problems. My case is considered mild to moderate so I am thankful for that. I am thankful for the support that I get from my family and the understanding of my eating changes that are oh so complicated.
I am praying that my case qualifies for a new IVIG infusion therapy that can minimize the symptoms and even reverse some of gastroparesis, this is our next question for my Doctor. I am not telling you for your pity, I am telling you because I feel you need the full explanation and to bring awareness to this "invisible" disease.
To bring awareness and education to gastroparesis, here is a link of an overview of the disease.
Also, I would love to bring awareness to GP by the "pie in the face" challenge. Here is a link to their Facebook page. Let me know if you think I should do this!