So, here’s what’s going on…

Hello, friends,

I’ve missed you all terribly.  I apologize that my posts and blogging participation has been erratic this year.  As you know, I had surgery then complications following the surgery.  Here’s what I’m dealing with (and I apologize in advance if it’s too long… I’ll try to keep it brief.):

Throughout 2015 – I vomited five or more times a week, my hair was falling out, my tongue was coated all the time, I was exhausted and freezing all the time, my vision was blurry much of the time, and I generally felt like crap.

Late 2015 / Early 2016 – I started undergoing every test imaginable to man.  This included numerous bloodwork, barium swallow studies, an endoscopy, a colonoscopy, a large and small bowel study with barium, multiple x-rays, several ultrasounds, and probably some more stuff I’m forgetting right now.  I was diagnosed with low iron anemia and low B-12 anemia, so I had to start taking supplements twice a day – Not surprising considering how often I vomited and how few foods I could actually eat in the first place.  (The really sucky thing was, with all the puking I was doing ALL YEAR, I only lost 10 pounds!)

The truth is, I was convinced I had either esophageal or stomach cancer.  Cancer runs rampant in my family, and I’ve personally already had cervical pre-cancer twice, so I was prepared for it.  In fact, at one point, I felt my life ebbing, and knew I didn’t have much longer.  I started getting things in order to prepare for the worst.

Late January 2016 – I was diagnosed with an extremely diseased gall bladder and was still waiting on results for most of the other tests.

February 2016 – My gall bladder was removed, and I felt SO much better —  better than I had in YEARS!  I mean seriously, I had actually forgotten how it felt to feel that great!  For the following two weeks, I ate food I hadn’t tasted in months or even years because it had always given me a negative effect in the past.  WOW!  This was amazing!  I didn’t throw up anymore.  My hair stopped falling out.   My vision was perfect.  I had energy.  Life was wonderful!  (If you didn’t read about it already, I detail it more here:

1 Week Post Surgery – All my other tests came back, and while I had some stuff show up, nothing especially egregious was noted.  Since I was feeling so much better, the doctor said it was likely that everything I had experienced was due to how incredibly diseased and infected my gall bladder was.  Only then did he confirm that I was indeed at death’s door before my surgery.  He said at best, I was only days away from it having ruptured had it stayed in.  He told me I could discontinue the iron and B-12 supplements because my body should be getting back in order.  What great news that I didn’t have cancer!

2 Weeks Post Surgery – Something went horribly wrong!  I puked black sludge and some hard objects that I hadn’t eaten and were never identified.  I had an x-ray that showed a “mystery object” inside me.  And excuse the language, but I felt like complete shit!  I mean I seriously never felt worse in my life!  (I documented that horror here:

I appreciate all of you who encouraged me to get myself to the emergency room stat, and that’s exactly what I did.  (Though, the $1,000 E.R. co-pay hurt almost as bad as my belly did!)

You can see the “mystery object” above the hip bone.

The hospital gave me a CAT scan, and the “mystery object” showed up again, though it had moved.  However, the E.R. doctor didn’t seem concerned, and he told me I was probably only having pain from a tiny hernia that was likely caused either by my surgery or by my level of activity following my surgery.  He sent me home with some mild narcotics and told me to take a few days to rest.

(I was highly peeved.  This didn’t feel like $1,000 worth of treatment!  Of course I felt much worse a few days later when I received a bill for an additional $500 because apparently my insurance has a separate copay for imaging!)

Early March 2016 – I had a doctor friend of mine write me a script for another x-ray at a different facility, and the “mystery object” was still there, but it had moved.  This was 12 days after the original x-ray.  He told me it could be a calcified gallstone that dropped during surgery and was floating around in my peritoneal cavity.  Great.

Twelve days later, the “mystery object” is now close to my spine.

Mid-March 2016 – I saw a doctor at a different facility.  For some reason, he got stuck on the part about the small hernia and didn’t hear anything else I said.  I was back to vomiting almost daily and sometimes twice a day, my hair started falling out again, my vision was blurry again, I was exhausted all the time again as well as freezing, and to add to my misery, now not only was I every bit as sick and pukey as before my surgery, but there was this thing in me, and after the awful black sludge and hard things vomit, I was terrified to get sick!

This doctor x-rayed only my lower abdomen and said the object was gone.  Actually, the x-ray tech tried to tell me that I must have – now get this – swallowed buckshot, and it had passed!  Yes, really!  When I told her I don’t eat meat, other than the occasional fishsticks or tuna sandwich, so it would be impossible for me to ingest buckshot, she then tried to tell me I must have swallowed a metal button!  (The fact that I own nothing with metal buttons notwithstanding.)  The fact that they didn’t x-ray the entire peritoneal cavity made me wonder if the object really did pass, or if it’s still floating around in there.

Early April 2016 – Things were really getting old for me as well as others around me.  In fact one “friend” told me to “get over it and move on already.”  (Thanks.)  My “quality of life” (What quality of life?) was non-existent.  I saw a new surgeon referred to me by the Mid-March doctor.  He ordered an MRI (with another $500 copay!) and suggested that if my bile duct still had infected gallstones in it, that could be the reason for all of my misery.  I was hopeful.  He also offered to operate on the hernia.  I declined.

Mid–April 2016 – I got the results back from the MRI.  It seems the bile duct was fine.  Furthermore, they failed to look at any other section of my abdomen for that “mystery object.”  At this point (and with no offense to anyone who has battled cancer), I almost wish cancer would have been my diagnosis – at least then, they’d know what was wrong with me and I could have hope for treatment.

Late April 2016 – I went back to the original facility that did the surgery and saw a GP there.  I told him my symptoms were: daily vomiting, hair loss, exhaustion, coldness, coated tongue, pale face, pain in abdomen, blurry vision, and general malaise.  Plus I fear there could be a thing floating around in my peritoneal cavity.  He told me, and I quote, “No, that’s too much.  Pick your top three symptoms, and we’ll try to deal with those.”  Yes, really!  So I chose vomiting, hair loss, and blurred vision.  He then decided exhaustion needed to trump hair loss, and told me to see an eye doctor for my vision, and he said I didn’t need any more x-rays to see of the mystery object was still present, and that it was a “ridiculous request.”  (Jerk!)  He then ran another thyroid panel, as well as a CBC, and checked my iron.  Later that week, he claimed all the bloodwork came back fine.

So…  I started taking the iron and B-12 supplements twice daily again despite the bloodwork being fine, and guess what?  My vision is back to normal, I am still really tired, though not as much, and my hair loss is still more than normal, though not nearly as bad as it was.

However, I still vomit at least five times a week, and sometimes twice in a day.  Anxiety courses through me every time someone asks, “What’s for dinner?”  I now judge and select food not by how it tastes going in, but by how it might taste coming back up.   I still have constant pain in my gut.  I often puke so violently, it causes nosebleeds.  And I have tiny broken blood vessels all over my face from throwing up.

As far as the “mystery object,” maybe it’s still floating around in there somewhere.  If so, from what I’ve read, I can expect it to eventually puncture an organ or cause an abscess, and I guess at that point, someone will remove it.  Or, maybe it really did get in my digestive tract and pass.  If that’s the case, I have to think it’s more of whatever the hard things were I puked with the black sludge.  As a few medical friends have said, it could only be metal or an extremely calcified stone to show up the way it did in the x-rays.  I have to wonder if something happened during surgery for stones to slip into my belly somehow, though that seems unlikely.

I don’t know.  But what I do know is, I feel miserable, and no medical professional that I’ve seen seems to care.  Many of my “friends” make jokes about having me committed because I’m “crazy” and “it’s all in my head.”  And that gets old, too.

Anyway, I know I promised to try to be brief, and I already failed at that, so I’ll close now.  Thanks for reading and sticking by me.  I miss you guys!  xoxo


59 thoughts on “So, here’s what’s going on…

  1. Oh, Kindred… how awful. I am so, so sorry this is still going on. I know what this is like to a degree… 12 years, 12 miserable, sanity-doubting, physician-derisioning, family-mocking years before I finally got the diagnosis for my rare disease. And I might add,, not one following apology either from those unsupportive mentalities.

    It took me that long to finally come across that one doctor who looked at me and trusted his instinct over the reams of records. Sending out expectations to the Universe that your own listener is coming to you as we speak.

    Huge hugs, sister… xoxox

  2. Well young Rachel I am having one of those ‘lost for words’ moments. When one is ill, really ill one feels so totally alone (been there yet not to the extent you are; although at the time one is ‘there’ – not knowing what’s wrong all sorts of crap goes through the mind making matters worse). Consider the good things whatsoever they may be…focus on those. Stay in touch, support from others helped the ‘alone’ bit I found. All our love, Mike & Shirley

  3. Oh dear, this sounds terrible. I hope things manage to get sorted asap and you are on the mend soon. Best wishes, stay positive, and I’m sure everything will work out ok.

  4. Shit woman! I want to hold you in my arms and make it all better. If you can’t come to England then I shall have to fly to you and do some serious nursing. I’m not qualified in any way but hopefully can raise a smile. Lots and lots of love. Xxxxx. Ps. I can shout like fuck at all your medical people too.

  5. Wth?! We had no idea you’ve been going through all this. You need to definitely need to get that object figured out. Insist your surgeon either find it or make sure it’s gone, or subtly tell him you work for an attorneys office and sue him for malpractice.

  6. Oh my goodness. I’m so frustrated for you. I wish there was something I could do for you. Later tonight I will do a meditation and dedicate it to your healing

  7. My God~ Well, you have confirmed my beliefs about the doctors and the medical profession: they are all guessing at best…do not listen to their patients (I mean—really?! Who knows their body better than the person him/herself? )…and we find ourselves going from one doctor to another. I feel for you…I am sorry for the constant vomiting…it wears a person to a frazzle! You have been through hell–and you seem to continue to make continuous journeys there—Damn! Perhaps you need to find a Chinese doctor or homeopathic doctor? The way I see it, from my own desperate experiences, the only differences between a doctor and we laypeople, is that they paid for some initials behind their names. I am sorry—but I am NOT impressed with the medical field! I hope you find someone or something that can help you soon!

  8. I wanted to hear that someone removed the object and everything was looking up for you. I wanted that so bad. I hope things improve and you can check in with us once in a while.

  9. OMG – all this and still no relief, I felt bad actually clicking the ‘Like’ button, I sure don’t like the news. I can only hope for your sake that the medical profession figures out what wrong with you!!

  10. Much like her long time friend here, (you know who I am) being a freak of nature is not for sissies! Although she is a lot tougher than I am, she is in my prayers every night.

  11. I seized several times a week for over a year before I was finally diagnosed with epilepsy and given the medication to treat it (after having a massive seizure during an EEG), but not before it caused incurable problems. It is amazing to me how many medical “professionals” simply won’t listen and don’t want to believe what the patient is telling them. So sorry you have had to deal with what you have dealt with. When they took my gall bladder, that issue was gone for me. I will keep you in my prayers. Thanks for updating!

  12. Rachel, this is way too many bad symptoms and I would be crying if all of this happened and demanding someone to pay attention to the mystery object. I would think about getting a lawyer to pursue the operation and find out if something wrong happened! I am very sad and will keep you in my thoughts and prayers, dear. So sorry about this horrible year gone wrong! 😦 hugs!

  13. Oh my, Rachel. I was so hoping this was going to be a post about you being all better. This is awful. I know you’ve been to several doctors, but perhaps you need to find a new one. I forget where you are, but maybe seek out a really good hospital/medical center? And haven’t you done work for a lawyer? Perhaps he can advise you about pursuing legal action. I really hope you are feeling better soon! Huge hugs, my friend!

  14. aw, rachel. like merril above, i was crossing my fingers to read about you coming out of all of this nightmare. this just goes on and on. please don’t give up and i’m hopeful you find someone what sees the real picture and gets It

  15. Oh, wow! What an awful experience! Sorry you have to go through all that ordeal just to try to find out what’s really going on with you. I guess that’s why doctors nowadays are called practitioner is because they’re just practicing. They don’t really know what they’re doing. You remind me of this woman who experienced the same thing you experienced. To make the story short, after about a year or two she finally found a doctor who knew exactly what she was experiencing. Yes, there was seriously something wrong with her. You might want to ask around (friends, co-workers etc) if they know a good doctor. If you are vomiting, there’s something wrong. No one vomits for no reason. I’ll keep you in my prayers. Take care,

  16. I pray that someone will listen to you and do something, for it makes no sense at all that they cannot find the problem. I’m hoping you have good news soon!

  17. Omg! You poor thing! I do hope they get to the bottom of what’s wrong with you. People can be really horrible about illness – especially if it is a mystery. Keeping you in my thoughts. ❤

  18. Rachel–I’m very sorry to hear that this problem has not been resolved. Don’t give up and I hope you connect with someone soon who will take this issue seriously. You will be in my thoughts.

  19. The medical profession needs to start treating everything like it’s serious and start eliminating possibilities from the get-go. It’s better to overreact to nothing than to miss something truly life-threatening.
    Consumer Reports did an article on problems with the regulations in the medical profession a few months ago… maybe you should send your story to them? They tend to get results and spread the word and react a lot faster than the actual service/goods providers.

  20. I think I may be losing my hearing after more than a year and a half of working in environments with loud or constant noise and an ear infection which may or may not have gone away. I don’t know if I want to get my hearing tested; I don’t think it’s bad enough that I’d need hearing aids and I know that I can’t hear people talking at me across the room any more. I can recognize voices still, I just can’t discern every word any more. I’m also afraid that they’ll tell me that there’s nothing wrong with my hearing and I should stop malingering. I’m sure there is something wrong. I keep having to ask people to repeat themselves even when we’re just talking at home when nothing’s going on in the background, if they’re talking away from me, for instance. The worst part is that sometimes when I ask people to repeat themselves they look at me like I’m an imbecile. Or they’ll decide they didn’t want something anyway because they’re mumbling and I’m trying to clarify and they walk away without it after paying for it, and then I get into trouble. It might help if I had it as a disability on file, but I don’t know what to do.
    Looking back, I can see how this started to happen, really–it all started around the same time as I started complaining about white Americans who were probably born and raised here who don’t have any excuse but who can’t speak good, clear English. I understand that sometimes an accent will throw me, and I try to be considerate of anyone who is struggling with the language, but white Americans who I can’t understand because of a lack of enunciation and grammar? That just frustrates me. (I also started to wish that my high school Spanish had paid off more, because then I’d speak another language and that would be a good selling point on my resume, and also I’d misunderstand Latinos less when taking their orders. I really hate it that I only speak one language fluently. I feel so impaired.)
    Some people are really nice, though. If they’re patient with me when I’m trying to clarify, I always make sure to tell them that I’m very grateful for their considerate behavior, it’s rare. It’s those instances of kindness that make it possible for me to keep going.

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