The Long and Short of It; Otherwise Known as My Medical Ordeal
This is a compilation of events from 2015-2016 when I started having a lot of medical problems, along with updates from then and now.
Editor’s Note: I am leaving this as it was written in 2016, to preserve the original tone of the piece.
CW: medical appointments, scans, surgery, chronic illness, etc.
The short of it:
On Thursday, 03/24/16, at 11am, I will be having surgery to remove one of my organs that is not functioning properly. Recovery time averages one week and I am on a leave of absence from work until I have a note from my doctor that I can return.
The long of it:
September 15th, 2015: I started having pains in my abdomen. I know exactly what day it was because it was Fajitas & Margaritas night which is a monthly gathering with a few friends. (Plus, I have it written in my notebook.) I skipped the margaritas that night and took some ibuprofen instead.
September 16th, 2015: At work I was in so much pain that I called my partner to come get me, and we headed to the ER. They did a urinalysis, blood work, and a CT scan. I was informed that I wasn't pregnant, I have kidney stones, but they weren't in a spot that should cause any pain, and that my appendix is pushing the upper limits of size but not inflamed. They gave me some drugs and told me to come back if the pain didn't go away in a day or two because they thought I could be on the verge of appendicitis.
September 17th, 2015: I slept the day away on drugs.
September 18th, 2015: Back to the ER. This time I had an ultrasound and they told me that my pain was likely due to a ruptured ovarian cyst as it was the perfect time of the month for that to happen. I was advised to get on birth control and the pain would go away.
September 2015: cancelled my girl's trip to the cabin and a work trip to the plant. :( :(
October 2015: I started on birth control and my doctor said I would feel better very soon. If the pain didn't go away after 3 cycles, to come back.
October and November 2015 are kind of a blur. I cancelled a lot of plans and spent almost all my free time not at work in bed. I was taking ibuprofen on a timer every 4 hours and it didn't seem to be helping. I told some of my friends that I had ovarian cysts that were exploding inside of me, and it would be just my luck that my lady bits would be my demise.
December 2015: 3 cycles had come and gone so I went back to the doctor. He told me that the ER never saw an ovarian cyst in the ultrasound or any indication that it had ruptured. That they only told me it was that because of the day it was in my cycle. The feminist in me was enraged that they would blame my womanhood as the cause of my pain without proof. A likely story. At this point, I was taking notes of when the pain was the worst and it seemed to be peaking around the time I was ovulating/most fertile (thanks P Tracker app for your notes function!) so I mentioned it to my doctor. He said I should go see an OBGYN but that he thought we should also explore a kidney specialist if that didn't pan out. He broke it down like this to ease my anxiety: You aren't pregnant. They didn't see any tumors. They didn't see any signs of disease. So even though you are in daily pain, you aren't dying. (At least not any faster than anyone else.) I said that to myself over and over whenever it got bad. I tried to live my life like usual, but I still cancelled a lot of plans.
January 2016: had a couple more ultrasounds and saw an OBGYN. They told me I had a cyst (which in case you don't know is the same thing as an egg. They just call it a cyst when it hits a certain size.) and the cyst in my ovary was the perfect size to make a baby. I just laughed and told the girl I didn't want any babies. My ultrasound results were "unremarkable." The OBGYN said, "I can push on your ovaries and dribble your womb. I don't think your problem is OBGYN related."
February 2016: In an unrelated appointment, I went to the dermatologist and got my first full body scan. She removed 6 spots/moles. When the tech called to leave my test results, the message was 3 minutes long, so I refused to listen to it until after work because I was sure any message that long was nothing but bad news. The first 10 seconds were her telling me because my name wasn't on my voicemail that she couldn't leave my results and I would have to call in. The rest of the 3 minutes was background noise and rustling because she forgot to hang up the phone! I called in and all my results were fine. (But an entire day of thinking I had skin cancer just added to my anxiety about my health issues.)
Also, in February 2016, I had an appointment with a kidney specialist. Turns out one of my best friend's mom is one so I booked with her. It was only slightly weird to meet her for the first time while I was pouring out my medical history and health woes to her. She was very kind about the entire thing. More blood work and urinalysis. The results were only slightly abnormal. I have low iron. So, I started taking iron supplements only to find out that I am allergic to them! (Just my luck. Go ahead and laugh though. I did. I'm allergic to EVERYTHING.) She advised me to eat more red meat, broccoli, spinach, and to use my cast iron skillet to cook.
March 2016: I basically told my doctor that while it was reassuring to know that all my tests thus far have pretty much been normal, it does nothing to ease my anxiety. Some of my family members were trying to convince me the pain was all in my head and physical manifestations of my anxiety. But I knew that wasn't the case. My anxiety was in check and only spiked when the health issues started. It seemed like the pain was worse after I ate. I did a super scientific experiment (/s) one day where I tried to recreate the pain. (It didn't quite work.) and then another super scientific experiment where I didn't eat all day. (I felt better until I ate.) He asked me if the pain was worse after eating fatty foods. I hadn't really been paying attention. Once I started paying attention, I realized that was probably the case. My diet is usually pretty healthy (due to all my food intolerances). But once I started not feeling well, I started eating crap. And then the crap I was eating kept making me feel terrible. A vicious cycle. (Velveeta has always been a weakness of mine. I know it isn't really cheese. I know it is super processed. But it is delicious melted with rotel and meat and eaten with tortilla chips. I swear it was probably all I ate one month because I wasn't up for making anything else. No wonder I was in so much pain!)
Also, in March 2016, I went to see a GI doctor. He pushed on me and said it was most likely my gallbladder, but it could potentially be muscular too. So, he scheduled a HIDA scan for me. I took a day off work to go have it done. They put this radioactive liquid in your body and take pictures every 15 minutes until it hits your gallbladder. Once it is there, they put hormones in the IV and then you sit in an imaging tube that takes constant pictures to determine how well your gallbladder is functioning. Looking back on it, the scan was actually pretty easy, but my anxiety was so high, and I hate the claustrophobic feeling of being unable to move in those scans, so I totally freaked out. If I wasn't able to have my ipod in there with me, I don't know how I could've gotten through it.
The results came back pretty quickly. Apparently, the normal gallbladder functions at 35-50% in that scan and my gallbladder was functioning at 4%! Finally, a test result that came back with a cause. I cried even though I was happy. I felt validation that there was something physically wrong with me that was causing the pain and then also sad that my organ was failing. I mean, it is really tiny, but I expected it to do better. The note in my chart from the GI doctor to my primary doctor was succinct: "Your gallbladder is not working well. I suspect this is the cause of your symptoms. I would talk with a surgeon about removing it."
Everything happened really quickly after that. I had a consultation with a surgeon, and he told me I have two options. 1) do nothing and deal. 2) surgery to remove my gallbladder. Apparently, they aren't certain what causes a gallbladder to stop functioning (just like they don't really know what causes muscle cramps or migraines) especially when gallstones aren't present and per my tests, they aren't. There isn't any other way to fix a gallbladder. No medication or anything. I told him option one was not an option. I've been dealing with pain for 6 months and going to so many doctor appointments, specialists, etc. that I just wanted to feel normal again. I can't even remember what that feels like.
On the upside of things, I've already met my deductible and I picked the Gold plan this year. So, there's that. I waver back and forth between being really excited and hopeful that my health ordeal is coming to an end and Fear of the unknown. My partner looked up the statistics (because you know I'm not allowed to go down that rabbit hole) and advised me that this is the Most common surgery in the US. That the fatality rate is something like .00001 percent and "I'm not THAT special." His smartass joke did make me laugh and feel a bit better. Plus, I have some friends who are going through some serious stuff: a ruptured ulcer on an artery which required eight blood transfusions (the max allowed!) and thyroid cancer. I really should shut up and count my blessings. My mentor at work told me about all her prior surgeries: cataracts on both eyes, knee surgery, and breast cancer. She told me I would be fine and that surgeries nowadays are so much better than before. She also said that her radiation was way worse than any of her surgeries and that helped me put things in perspective again too.
I'm having a laparoscopic cholecystectomy tomorrow and I feel like it is one of the best possible outcomes for all I've been dealing with for the last 6 months. I'm trying to remain confident that this is the light at the end of the tunnel (but not in a Death way). That this procedure and recovery will be just a tiny blip in life after which I will feel so much better and remember what it is like to live without pain again. They did tell me there is a slight chance that I may still have pain after this and there could be another issue as well, but I told them I would cross that bridge when it comes, if it ever does. I'm choosing to feel optimistic that this is the answer, and things will only go up from here. The past 6 months have been filled with death, despair, and doom. The timing of this surgery is great for me because I'm treating it like a rebirth. As Spring arrives, (although you wouldn't know it by the snowstorm outside today) I will recover and be renewed. I'm also choosing to believe that my friends who are going through tough times will also soon be on the upswing. The beginning of 2016 has sucked so hard (I have a list of all the terrible things that have happened.) but I'm hoping the rest of 2016 will be a story of not only survival and perseverance but also of growth and prosperity.
***Update***
A month after surgery: I had to go have one of my stitches removed because I had a knot poking through my wound. I mentioned to the lady that I was still having pains, and she told me to go see my primary doctor if they were still present in a week.
I thought since a month had gone by that I could eat "normally" again. I ate a dinner of pinto beans, carrots, green beans, and rice then I was in so much pain I contemplated going to the ER. This pain was worse than any pain I had prior surgery.
I've been avoiding fatty foods and foods full of fiber. It seems to make the pain tolerable.
6 weeks after surgery: I went to my doctor. I told him I was still having pain. We discussed all my symptoms, and he said exactly what I was thinking, "Didn't we just have this exact conversation like 8 months ago?" I asked him if there is any way I was just healing really slowly, and he said at 6 weeks, I should be healed. I asked him if there was any obscure disease/syndrome/etc. that would cause my symptoms and my gallbladder failure. He said he didn't know of any. I had my blood drawn, and I went home with a goody bag of things to bring my poop back to the clinic for tests. He wants to rule out some infections that I may have gotten from surgery/antibiotics. We discussed a number of things. He said it is fine if I continue to abstain from foods that cause increased pain even if the things I am currently eating aren't very nutritious (sorbet, Cheetos-11 at a time, orange cream bars). I was losing an average of a pound a day prior to adding Cheetos into my diet. I also asked the doctor for a referral to a dietician. He told me to double-check with my insurance company as a lot of times they don't cover it. Once my blood work comes back and my stool tests come back, if nothing is found, my doctor's bet is that I have some form of colitis. The next step is for me to go back to the GI Dr. He said there is an endoscopy/colonoscopy in my future. Something to look forward to... (*sarcasm alert*)
I went to the GI Dr, and she thinks I have IBS. Although, I don't feel very convinced with her diagnosis as she didn't acknowledge most of my symptoms individually and pushed a prescription on me almost immediately. She recommended a book about it, and conveniently, they sold it in their office, so I bought it on the spot. I will start reading it soon to learn more. I'm currently postponing starting my new meds as the side effects include drowsiness, dizziness, and wooziness amongst other things, and I have to be able to drive if my partner needs me to while he is on narcotics for his kidney stone.
*This was originally published 23rd March 2016 on my old private blog.
***2024 Update***
8 years after surgery: It took an entire year for my body to recover completely from my gallbladder removal. I was unable to wear “hard” pants that entire time because I could not handle the pressure against my scars and abdomen. I have had other pain events that have put me into the ER where they blamed it on ovarian cysts. I am currently on birth control pills (again), and they do seem to help with my overall pain levels. But my chronic pain continues with acute occurrences on top of daily levels. I often still have increased pain around my ovulation, but my primary doctor and OBGYN both claim it is “normal.” I have had (at least) two kidney stones that I have passed, with many more still hanging out inside my kidneys. I’ve lost track of how many ultrasounds, CT scans, and MRIs I have had. (You may have read about all the ones I had in succession earlier this year.) I continue to go to the dermatologist every 6 months because I did have skin cancer at one point. I still have low iron, and haven’t yet found a supplement I can take that I am not allergic to. I definitely have IBS, and I’ve changed my diet dramatically to help. I no longer eat Velveeta. My insurance did/does not cover a dietician, so I have not seen one. I am not convinced that the removal of my gallbladder helped any of my symptoms, and sometimes I think it just caused more problems. I now also have a diagnosis of Fibromyalgia. I still don’t remember what feeling “normal” feels like.
I share all these details publicly because I think pre-disabled, healthy people think that if something goes wrong with their health, all they have to do is go to the doctor and that problem will be solved. In my experience, that hasn’t happened. I still often have pain levels that would send “normal” people to the ER, and for the most part, I’ve just learned to deal with it because none of the tests, scans, diagnoses have solved my issues. Hopefully sharing this will help validate someone else who is currently going through similar things.
