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*The top picture was my July bill that is due come the end of August. At the end of July, my current balance was $3,307.49 (This included the CT scan, image reading fees for both CT and ultrasounds, ER blood work, stool/urine analysis, ultrasound of the pelvic and upper abdominal region, and visit fees). I had a previous balance from June of $1,732.80. The bottom picture shows that a new claim submitted and approve to be charge to me on 8/11/2021 in the amount of $2,635.04 (This is just the cost of the Endoscopy). This is after my deductible and insurance. I do pay a premium of $343 a month for my insurance which does help because if I didn't have insurance that bill on 8/11 would have been $9,899.52...YIKES. But with all this adding up and still another specialist and at least one more, if not two, surgeries I don't see how we will make it through and that scares me.
TOTAL OWED AS OF TODAY: $5,942.53
TOTAL RAISED: $206
My Medical Journey
TOTAL OWED AS OF TODAY: $5,942.53
TOTAL RAISED: $86
Around my birthday, June 6th, I awoke with stomach pains. It was one of the hottest weekends we have had this summer, and there was so much personal misfortune happening around me, so I was thinking I had stressed myself into knots or was suffering from dehydration as I had not had a solid bowel movement in days. These are just some of things that were happening around that weekend to give you an idea...
My Dad went into the hospital for chest pains and ended up having heart surgery
My Uncle diagnosed with stage 4 non-hodgkin's lymphoma earlier this year was declining in health and had been in a car accident that killed his dog.
I had found out my Aunt was diagnosed with COVID
and my Best Bitch Forever, Blixx, was traveling to say goodbye to his Mom who had been battling cancer for over a year.
...Of course I wanted to be there for everyone but inside I was also going through mental and personal issues and I was trying my best to do what I can for each. I didn't want to burden anyone either because I know many others out there struggle day in and out, and I wasn't the only one that had her plate full with craziness.
That following Tuesday at my personal trainers I struggled hard to complete what should have been an easy work out. My body was not working with me and the pain was even worse. The heat was gone, but stress was still a possible factor. With Autoimmune issues I knew I could of worked myself up into numerous inflammation responses or my body was just turning in on itself, but now I was starting to choke on my food/saliva almost every time I eat. Also, I was feeling very dizzy and violently vomiting for no reason.
Again, because of my autoimmune issues, I am used to weird ailments and my body acting up and my doctors chalking it up to just a phase, or seeing me and just saying "we will keep an eye on it", so I knew that most likely they might do the same here. Or at least I may be okay. I didn't have a fever, so that was good right?
Not really because I couldn't eat now. Every bite of food brought pain, I was losing weight fast, and I was so tired/weak. I was at least smart enough to start drinking shakes to try to get some nutrients. Although it still hurt to drink them they didn't hurt nearly as much as solid food nor made me get sick as often. I would just cry because I really didn't know what to do because I still didn't have a fever but yet I was still in so much pain and hadn't had a solid bowel movement and it had been a week.
The Call
I finally decided to make the call and of course because of all my symptoms I couldn't just go in to see my primary doctor. I had to go into acute care on June 14th due to suspected COVID symptoms. This didn't sit well with me because I am high risk, but I did understand the concern and I really needed answers. I was able to get in that day and be seen, but because I had to submit to a COVID test all other requested tests and services were put on hold until I had a negative result. This did upset the doctor who saw me because when she was examining me and pushing on my stomach I burst into tears from pain. Now, those who know me know I don't cry from pain. I have had three all natural child births, and two quick outpatient procedures without any pain relievers in the past. So when I yelped and the water works started, she practically cradled me in her arms and apologized.
She had me go straight to the ER where she fought with staff and kept persisting I needed to have the tests done that day, but they were adamant that I had to wait till I had a negative result from the COVID test. Generally that took 48 hours. They did agree to have a nurse come take my blood for the labs and send me home with a stool kit, but as for the ultrasound/CT I would have to wait.
A couple days later I finally got the negative results and was able to schedule the imaging needed. One was for the 21st and the other for the 24th of June. Meanwhile I was still in the same amount of pain and eating was just a no go. I was pretty much drinking most of my meals. I just really wanted answers and I was hoping that with the images and the blood tests the ER took maybe they would have some, but a few days later I didn't get to hear what I quite wanted to. Although other concerned findings were found in the tests none of them technically belonged to the issues I was having or as they explained "should be causing your symptoms". My bilirubin and liver enzymes were high and there were signs of slight liver damage, mind you I am not a smoker or drinker, but it was chalked up to possible fatty liver at this point. My blood was acidic and I had high chloride, but nothing else stood out in the tests she ordered. In the scans I had thickening of the pelvic bones, more than average floating free fluid in the pelvic region, an enlarged left ovary, enlarged spleen, and several enlarged lymph nodes (periportal, celiac, para-aortic, and mesenteric), and, of course, degenerative disc disease.
Well, was that all? lol
Because all of that didn't really give me or my doctor any answers it was decided she was over her head and she referred me to Gastroenterology. On July 2nd I went in hopeful that possibly this was where answers might be found. I, again, had to explain everything and was pushed on to the point of tears. At first he looked at the previous results and pretty much repeated everything my primary doctor said. "Well, I don't see any signs of diverticulitis or polyps, and there doesn't seem to be anything of significance that would cause these symptoms."... It was a good thing I was already crying from pain because I literally felt I was going to be sent home with a "we will keep an eye on it." or "I don't think there is anything I can do." This only made me cry more. It wasn't till he noticed I never had an endoscopy, and have had digestive/health issues in the past that lead to other surgeries, that he started digging further into my charts.
Ultimately, he decided to send me home with a bile binder prescription, to possibly ease other symptoms due to the fact I had no gallbladder, and have me set up a date for an endoscopy to rule out anything else. At least it was something, right? So an appointment was made for July 15th and another negative COVID test was needed prior, so I set that up for the Monday before.
Being two weeks away I still suffered daily and my morale was not doing so great. I would try to eat but start choking and coughing. I would end up giving up or throwing up. Then would come the pain like someone was sticking two knitting needles up and under my rib cage and trying to knit me a Christmas sweater. I would hug myself and bear it because I didn't want to make the kids worry and so many people around me were going through so much, My Uncle had just passed away and I didn't want to burden them as well. I distanced myself during a lot during all of this because I couldn't be the Books people knew me as. I just wanted it to be over.
The day of the endoscopy, July 15th, all I wanted was answers. Besides a few hiccups with the IV I got in smoothly and when I awoke the nurse was there with chart in her hands. I listened as she explained that it appears I have a hiatal hernia, there was serious signs of severe and chronic gastroesophagitis and healing erosive esophagus. There was also possible short-segment Barrett's esophagus or esophgeal cancer. The gastrojejunal anastomosis was quite narrow, so while in there they ballooned it to widen the opening to allow food to flow out of the stomach easier. There are also signs of gastritis with shallow erosions in the pre-pyloric region and 5 biopsies were taken in all. It was also mentioned that they had found a hole in my stomach where stitches had come undone from a previous surgery in 2004, allowing a large amount food to go into an under-functional part of my stomach. Mind you I had to not eat or drink for this surgery and my stomach should have been emptied, so for them to tell me that I had a large amount of food in there was mind boggling.
Due to the concern of the erosive damage I was advise to start a Proton Inhibitor Therapy right away and to pick up the prescription on the way home. Little did I know I was getting three massive bottles of chalky goodness , *insert sarcasm*, to take home. I had to take 2 teaspoons 4 times daily while scheduling it around my supposed eating schedule and around my current meds. This was somewhat a challenge as I could only take this an hour before eating or three to four hours after, then also could only take it at least two hours after any medication as it could interfere with them. I literally had nine alarms on my phone reminding me when to take the medication, what medication to take, and when to try to eat. Notice I said try...because a few bites of solid food a day, if any, was really becoming a norm at this point. I did get a call a few days later to assure me that I did not have Barrett's nor did I have esophageal cancer but to also be told my surgeon was on a 2 week vacation and I would have to wait longer for any more results. Then not even a few hours later I get a call from the hospital asking about how much I can pay for the services that have been provided in the last couple of months. I knew some may have gone through to my insurance claims but out of curiosity I asked about the balance and we went through each charge. I couldn't believe what I was hearing. Even the endoscopy that I haven't even heard back from the surgeon about, that took only 15 minutes, was going to cost me over two thousand dollars out of pocket.
When I got off the phone that day I was shattered. Relieved to not have something serious wrong, but just the thought of having to wait. Then to hear that all these tests, calls, images, visits, and procedures had amounted to what they had punched me right in the gut. Being someone with an autoimmune issue and the one who already feels like somewhat of a burden when they are not 100% to their family, now has to present them with the hardship of further financial woe seemed so unfair. School was about to start and they needed new clothes and supplies, and the car needed to be inspected and to do that tires were needed. Lauren had just been named as an athlete to represent Team Maine for the 2022 USA National Special Olympics in Florida and we had no idea what was going to be needed to support that, but we knew that we would do anything and everything we could...but then here I was putting us in the red before we could even start. Or at least that's how I see it. And some of these tests came to no conclusion of what this particular pain or issue was, they actually pointed out more issues that my doctor wishes to pursue after all this is over. *facepalm*
When the surgeon returned I got a letter, July 27th, in the mail stating that he believed the pain was caused by the food being trapped in the under-functional pouch of my stomach. That it was causing my nausea and constant vomiting to try to push the food back up through the hole in attempts to correctly get it through my digestive tract. There was also signs of inflammation in the stomach lining and squamus cells due to the damage my stomach had sustained over an unknown period of time. He strongly urged me to continue the proton inhibitor therapy for at least two more months and that I get my primary to refer me to a gastric specialist to fix the issue and possibly the hernia fixed at the same time. The following day, July 28th, I put in a request, by message, to have the referral placed attaching the letter as reference. On August 18th I got the reply that the referral was successfully approved and placed.
So now I play the waiting game, I am still drinking most of daily nutrients and trying to eat one solid food meal a day. The success is hit or miss unfortunately and sad on some days. A couple of bites and I can't do it anymore. The effects of eating like this has made me drop weight, become quite weak, and have flare ups due to my other issues. Believe me, I want a huge ass burger with fries or a big breakfast with all the fixings like you wouldn't believe. It has brought me to tears on many occasions. I also need this pain to stop, I'm used to some daily aches, but this has got to be the biggest Christmas sweater anyone has ever knitted. It takes my breath away at times and I can't even talk, and no I don't want to take pain meds for it. I'm stubborn, I know lol. I just feel if I start now at 38 with all my issues when I really need them later in life they won't work. What also keeps going through my mind is I'm in my third month of living like this and the only thing I have to show for it is a hospital bill that is only going to get worse. I do suppose this therapy is suppose to be healing my esophagus and stomach a bit so maybe not just that, but it is the one thing that just sits on my mind. I think of all the people out there who are probably in the same boat. Making the same choices and sacrifices I am right now and it hurts my heart. That there such a price tag on our physical life that it takes away from the loved ones around us and the quality of which we live it.
*** UPDATE:I got a call on Thursday Aug 26th finally to set up a consult appointment with the specialist surgeon which is now Monday the 30th. PROGRESS! ***
Thank you to Rhi, Glittery, for putting this all together and helping me in this time of need. You are such an amazing person with all that is happening to also put your heart into helping someone else speaks volume. *BIG HUGS*
AGAIN....
We will be streaming all day on Twitch so please come along, laugh, share the stream, and, if you can, donate. Every single penny makes a difference. With Love - Books
TO WATCH
TO DONATE
*The top picture was my July bill that is due come the end of August. At the end of July, my current balance was $3,307.49 (This included the CT scan, image reading fees for both CT and ultrasounds, ER blood work, stool/urine analysis, ultrasound of the pelvic and upper abdominal region, and visit fees). I had a previous balance from June of $1,732.80. The bottom picture shows that a new claim submitted and approve to be charge to me on 8/11/2021 in the amount of $2,635.04 (This is just the cost of the Endoscopy). This is after my deductible and insurance. I do pay a premium of $343 a month for my insurance which does help because if I didn't have insurance that bill on 8/11 would have been $9,899.52...YIKES. But with all this adding up and still another specialist and at least one more, if not two, surgeries I don't see how we will make it through and that scares me.
TOTAL OWED AS OF TODAY: $5,942.53
TOTAL RAISED: $206
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