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 Post subject: I can't even...
 Post Posted: Sat May 19, 2018 8:11 pm 
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There's just been so much going on I don't even know where to begin. I don't want to turn this into a TL;DR post but so much has happened between the last post and now that I've kind of lost track of time. Everytime I attempted to write a post my mind would just wander off onto something else. It's been difficult to stay focused on any one thing for an extended period of time. And by that I mean, I couldn't even stay focused long enough to write a single post to my journal. I can only imagine how difficult this has been for Rob, trying to stay focused long enough on the details of the story to post an update.

One of the things we've had to deal with is the incompetence of other people responsible for performing what I would consider extremely important tasks. For example: pathology slides of a liver biopsy. Specifically, my liver biopsy slides.

So, first we needed to fill out paperwork authorizing said slides and other medical records to go to specific doctors and/or hospitals. We purposely did this in person to be certain that the authorization was in the hands of the hospital that was holding these slides and medical records. We assumed that when we personally handed over the authorization forms that the requests would be made. I followed up the following day with the records department and they had no paperwork authorizing the release of the information we had requested.

Why? Who knows? I guess it just got shuffled in paperwork on the desk of the woman we handed our authorization and request to. Terrific. So, they emailed me the authorization form, I filled it out again, and emailed it back. Great.

Although the medical records had been forwarded to where we wanted those to go, the slides did not.

I followed up with another phone call, this time specifically to pathology. I was told that they would email me another authorization form. When no such email showed up in my inbox that night, I called pathology the following morning to say I did not receive the email. The person on the other end said that it was okay, they had received a request for the slides from the doctor we wanted to send the slides to and that they would ship them out that day. Okay. Wonderful.

The doctor contacted me with a follow-up email about a week later asking how I was doing and was wondering if the slides were on their way. I was like, what? You didn't get them? ....

So I call pathology again. Nope. Slides did not go to where I was told they were going. They went to a different hospital (which, technically was fine, however, that was not our top priority request nor where I was told they were going). On top of that, the slides were not returned FedEx as per the requested return instructions. They were returned via USPS which added an additional two days.

Okay. Swell. But as soon as they were returned, says pathology, we shipped your slides, FedEx overnight, to your requested destination on April 30. Here's your tracking number. Great. Thanks.

Keep in mind this all began around April 14 give or take. It is now late in the day on May 3rd.

I look up the tracking number. The tracking number says the slides are sitting in limbo at FedEx. They haven't gone anywhere. I'm like, are you serious? So I call FedEx. FedEx says they'll put a tracer on it and will call me back in about two hours. They never called me back. I emailed pathology to inform them that the package has been sitting in limbo at FedEx and to please contact them to find out why.

Around 6:30pm the following day I get a call from FedEx. My package was sitting in limbo because the package had no city, state, or zipcode listed on the address to where it was going. I'm quite certain my jaw hit the floor at that point. As calmly as I could, I asked the FexEx person why my package was just left sitting there instead of contacting the sender to get the necessary information. I mean, did they just throw the package in a bin and forget about it? Undoubtedly. Why should they care if the sender didn't care enough to put the full address on it.

I don't know if FedEx contacted pathology to get the necessary information or if pathology got a hold of FedEx and FedEx repeated the same story, but the following Monday I got a call from pathology telling me that, unfortunately, the package did not have the city, state, and zipcode but FedEx now has that info and the package will be delivered on Tuesday, May 8.

I kept my eye on the tracking number and when I saw that it was delivered I contacted the doctor to let her know that the package was in her building if she hadn't already received it.

Okay. This was one task. One package needed to go to one place. I can understand one person failing to perform their part of this one task. But it's like every freakin' person who was involved on some level of this one task failed. From the person who took the authorization form from my hand, to pathology who shipped the package to the wrong hospital, to the person at that hospital failing to follow the return instructions by not expeditiously returning the slides, to pathology (again) neglecting to correctly address the package to include the city, state, and zipcode, to pathology (again) not following up on that tracking number first (instead of assuming it had made it to it's destination) before forwarding it to me when I questioned where the package was.

That's a lot of failures for one task. It also brings to light that it takes more than just one person to complete one task. With that in mind, doesn't it make you wonder how buildings remain standing, or how planes just don't continuously fall out of the sky?

I guess I'll just roll the dice to decide what topic I'll post next.

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     Post subject: Re: I can't even...
     Post Posted: Sat May 19, 2018 9:25 pm 
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    Holy smokes, well hopefully that was getting the bad luck out and now the good luck streak strikes next. Way to keep on top of that considering everything that is going on.

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     Post subject: Re: I can't even...
     Post Posted: Sat May 19, 2018 9:59 pm 
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    I work for a major hospital in Iowa. I suspect that fighting with hospital or clinic isn't what you want to be doing, nor do you particularly want to be suing them. (though you'd have a good one) There are good options to get them to treat your stuff more carefully though. Please contact the hospitals ombudsmans office, sometimes called the office of patient experience or the compliance office. Tell them your story and note that they violated federal law at least twice via HIPAA. Shipping the slides to the wrong hospital was a MAJOR violation, potentially punishable by thousands of dollars in fines, and if it was deliberate, jail time for the person who did it. I promise you they will make sure your stuff is handled better next time, even if you don't choose to sue.

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     Post subject: Re: I can't even...
     Post Posted: Sun May 20, 2018 12:20 am 
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    Skull the Troll wrote:
    I work for a major hospital in Iowa. I suspect that fighting with hospital or clinic isn't what you want to be doing, nor do you particularly want to be suing them. (though you'd have a good one) There are good options to get them to treat your stuff more carefully though. Please contact the hospitals ombudsmans office, sometimes called the office of patient experience or the compliance office. Tell them your story and note that they violated federal law at least twice via HIPAA. Shipping the slides to the wrong hospital was a MAJOR violation, potentially punishable by thousands of dollars in fines, and if it was deliberate, jail time for the person who did it. I promise you they will make sure your stuff is handled better next time, even if you don't choose to sue.


    Just to clarify: we wanted the slides to also go to that other hospital but not at that time. Our priority request was for the slides to go to a different hospital. When I spoke to pathology 10:00am that morning, they specifically identified the correct doctor and hospital the slides would be going to, and said the slides would be shipped overnight that day. But for whatever reason that didn’t happen.

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     Post subject: Re: I can't even...
     Post Posted: Sun May 20, 2018 2:13 am 
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    This amount of incompetence leaves me speechless. I mean, its not like lives depend on the correct service of the people working in the hospital! Unbelievable. If something so basic like shipping a package does not work what does that say about everything else? The next time they have to ship something, offer to do it yourself. Would probably work better.

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     Post subject: Re: I can't even...
     Post Posted: Sun May 20, 2018 2:46 am 
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    I'm speechless. There is just nothing to say about this level of incompetence except that I'm sorry you've had this garbage piled onto what is already a crappy situation. :(

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     Post subject: Re: I can't even...
     Post Posted: Sun May 20, 2018 4:36 am 
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    It SUCKS, emphasis on SUCKS that you had to deal with that. I desperately and aggressively hope things get less complicated and frustrating for you. You guys have a lot to deal with, beyond frustrating bureaucracy to deal with. I hope it gets better, and quick!!!!

    Good luck. And as I try to say consistently: We're all here for you, however we can be. We're all on your side. We care about your wellbeing, independent of the C-word. And we are all, aggressively, on your side. I hope things get simpler.

    Let any and aaaaalllllll of us know how we can help, if you find a way that the collective Erfworld community CAN help. And know, intrinsically, that it's OK if you don't know how we could help, because it's OK if you don't know how/we can't help. Lots of love from your friends and fans!

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     Post subject: Re: I can't even...
     Post Posted: Sun May 20, 2018 5:39 am 
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    Sadly, this level of incompetence does not surprise me in the least. Is it typical? No. But surprising? Also no. It's a combination of things becoming routine and people being too arrogant to admit when their current process isn't reliable enough. And it is, sadly, quite common everywhere all the time.

    And people wonder why I say I live in a neverending horror movie.

    You know how you overcome that? Make allies. No seriously. Make allies of the nurses and the clerks. Make allies of the secretaries at the doctor offices. Become more than a photo, name, and patient number. Become a person to them. Tell them a funny story about your nephew. Listen to their story about their aunt. Commiserate with them over all those annoyances we all share. Go 5 minutes out of your way to say hello next time you are in the area. Be memorable in all the best ways.

    Then, next time something goes wrong. Call the ally closest to the problem. Let them know what's going on. Ask for their help. Be amazed at how they bend over backward to help you. Don't overuse it, but know you can use it when you need it.

    Truth be told, I do this (sorta) with people in food service. My friends usually give me funny looks when our waiter or waitress knows me by name. But it's cause I take time to smile and make conversation with them when they take my order. Every time they refill my tea glass "thank ya much." Every time they make a suggestion, "oooo, that does sound good." Every time they ask if we need anything (and we don't), "Nope, I think you got us covered <winning smile>." And never ever skimp on the tip. I only get bad service when it's someone new or it's a new place.

    Oh, and when something does go wrong... make a real effort to be patient with your allies/prospective allies. Stand out as the one who _didn't_ yell at them.

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     Post subject: Re: I can't even...
     Post Posted: Sun May 20, 2018 1:21 pm 
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    I work for a hospital lab in Alberta (western Canada) and things seem so different that a lot of the advice I want to give seems like it wouldn't apply.
    I cannot understand how FedEx is even allowed to be involved in this whole process. It likely saves a few dollars, but gah. My hospital is in a small rural town with a population of 10000, and we have a medical courier who transports specimens hundreds of miles every day, and goes to two different cities every single day. There is paperwork at each step of the process to document who has what and where it is.
    The regulations, where I'm from, say 7 days from the time the sample is taken is the prescribed time before a doctor should have it.
    Even some of the terminology isn't the same. Pathology has been broken into two distinct, different labs up here.

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     Post subject: Re: I can't even...
     Post Posted: Mon May 21, 2018 12:09 am 
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    Ouch, this one. Yea, this ROYALLY sucks.

    Unfortunately, a hospital is a bureaucracy. A medical bureaucracy, perhaps, but still a bureaucracy, with all the dropped balls implied. This isn't common, by any means, but it looks like there were several balls dropped, both by the clerical staff and by FedEx. A synergy of apathy and incompetence which combined to create a singularly unpleasant scenario.

    I would certainly register a complaint with the appropriate department at the Hospital, pointing out how this delayed your treatment. Trust me, unlike a typical bureaucracy, hospitals actually *really* care about that, because as was pointed out, there were a few major violations of federal regulation in the matter. HIPAA is no laughing matter, not to mention violation of hospital policy on the same topic. If nothing else, it'll make sure they won't be repeating this mistake because they will be double-checking since the LAST thing they want is a suit like this. And by giving the hospital a chance to handle it 'in house' will also buy you good will with them going forward, which is *never* a bad thing. I hate to sound like the whining, wheedling little geek councilor suggesting such petty politics, however in this instance, it really does stand to serve you best.

    Such are your adversary's tactics, milady. Where force of might fails, he employs cunning subterfuge and foul Foolamancy to confuse your minions. Like the emblazoned Crab on his standard, the zodiac sign for Cancer, he prefers to move sidways, and strikes the same. 'Tis nought but a minor, but exceedingly frustrating, delay, Milady. He shall not evade us this day.

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     Post subject: Re: I can't even...
     Post Posted: Mon May 21, 2018 4:49 am 
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    I worked as a scientist at a couple different research hospitals for years. Dealing with the bureaucracy in those places is a NIGHTMARE. I don't know why. We had a lab fire at one point (I put it out and was dubbed the "laboratory hero" for a month) that basically ruined a chemical disposal hood. You need one of those when you work with dangerous chemicals! It took us OVER A YEAR to get that fixed, while god knows what was leaking into the air we breathed because we had no where else to dispose of chemicals. I still worry about it having impacted my health sometimes.

    TL;DR hospital bureaucracy is the worst I've ever seen, even putting the government to shame. I'm so sorry this happened to you.

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     Post subject: Re: I can't even...
     Post Posted: Mon May 21, 2018 6:14 pm 
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    DunkelMentat wrote:
    I worked as a scientist at a couple different research hospitals for years. Dealing with the bureaucracy in those places is a NIGHTMARE. I don't know why. We had a lab fire at one point (I put it out and was dubbed the "laboratory hero" for a month) that basically ruined a chemical disposal hood. You need one of those when you work with dangerous chemicals! It took us OVER A YEAR to get that fixed, while god knows what was leaking into the air we breathed because we had no where else to dispose of chemicals. I still worry about it having impacted my health sometimes.

    TL;DR hospital bureaucracy is the worst I've ever seen, even putting the government to shame. I'm so sorry this happened to you.

    Reminds me of the time in college... the lab had set up a three day period exclusively for ether extractions for biochem, because there wasn't enough fume hoods or enough time to cycle all the students through them safely. So instead, they opened up the windows, set up fans, and told everyone to 'make due'. Just walking into the room made your head spin.

    Well, one guy, who apparently was out sick when this announcement was made, AND who apparently was ignorant of the environment in general, was trying to rush a melting point extraction that was due while he was out sick. It wasn't until he got out his Bunsen Burner and sparker that I realized what was about to happen... too late to stop him.

    There was a brief but magnificent flash as all the ether ignited, however due to the additional ventilation given to the room, there was no explosion, just a flash-fire lasting for a brief moment. Most people got away with, at worst, minor burns. There were a few more serious injuries, but it was minimal compared to what I had feared would happen.

    Needless to say, the fellow got... counseled on reading the large printed signs on a lab before entering and being aware of one's surroundings.

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     Post subject: Re: I can't even...
     Post Posted: Tue May 22, 2018 11:57 pm 
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    This.
    Skull the Troll wrote:
    Spoiler: show
    I work for a major hospital in Iowa. I suspect that fighting with hospital or clinic isn't what you want to be doing, nor do you particularly want to be suing them. (though you'd have a good one) There are good options to get them to treat your stuff more carefully though. Please contact the hospitals ombudsmans office, sometimes called the office of patient experience or the compliance office. Tell them your story and note that they violated federal law at least twice via HIPAA. Shipping the slides to the wrong hospital was a MAJOR violation, potentially punishable by thousands of dollars in fines, and if it was deliberate, jail time for the person who did it. I promise you they will make sure your stuff is handled better next time, even if you don't choose to sue.

    And this...
    JadedDragoon wrote:
    Spoiler: show
    Sadly, this level of incompetence does not surprise me in the least. Is it typical? No. But surprising? Also no. It's a combination of things becoming routine and people being too arrogant to admit when their current process isn't reliable enough. And it is, sadly, quite common everywhere all the time.

    And people wonder why I say I live in a neverending horror movie.

    You know how you overcome that? Make allies. No seriously. Make allies of the nurses and the clerks. Make allies of the secretaries at the doctor offices. Become more than a photo, name, and patient number. Become a person to them. Tell them a funny story about your nephew. Listen to their story about their aunt. Commiserate with them over all those annoyances we all share. Go 5 minutes out of your way to say hello next time you are in the area. Be memorable in all the best ways.

    Then, next time something goes wrong. Call the ally closest to the problem. Let them know what's going on. Ask for their help. Be amazed at how they bend over backward to help you. Don't overuse it, but know you can use it when you need it.

    Truth be told, I do this (sorta) with people in food service. My friends usually give me funny looks when our waiter or waitress knows me by name. But it's cause I take time to smile and make conversation with them when they take my order. Every time they refill my tea glass "thank ya much." Every time they make a suggestion, "oooo, that does sound good." Every time they ask if we need anything (and we don't), "Nope, I think you got us covered <winning smile>." And never ever skimp on the tip. I only get bad service when it's someone new or it's a new place.

    Oh, and when something does go wrong... make a real effort to be patient with your allies/prospective allies. Stand out as the one who _didn't_ yell at them.

    Skull and Jaded Dragoon are giving good advice. I have personally used the Ombudsman method and gotten good results. They at least pretend to care. But you need to come at them in a non-aggressive manner to get best results.

    JadedDragoon’s advice on cultivating allies is my primary means of doing anything. So yeah, always do that. You can even confess to them after a while that you’re playing them. It’s ok, cuz it’s your life that’s on the line.

    I’ll leave you with two tips (both for you & for the benefit of readers) from someone that’s had to shepherd kids, spouses and friends through the system:
    1. Get a notepad and start noting every interaction and phone call, with date/time and name of contact. I use dedicated spiral notebooks, but others prefer 3-ring binders, like we used in school. The moment that you can read back, “On (date), at (time), I spoke to (name). They said...,” the whole conversation will change.
      • This sux. But it really works.Same deal on legal matters.
    2. Identify a backup Health Advocate now. Someone that you trust who’s been one before. Someone who can be the Bad Cop, when needed. I’m sure Rob’s doing great in this role. But not everyone can all of the time, everyday. And it sounds like you may hit a point soon where advocating for yourself will be a far greater challenge. So get a backup; a parent, sibling, in-law, friend, whatever. This person has to be willing to back up Rob, without overstepping. And they may need some type of limited Medical Power of Attorney (which can be suspended when Rob is around). That will let them talk to Drs and work with info that would otherwise be restricted. This is an essential step IMHO. It might save your life, not just save headache.

    Best wishes and Bright Blessings,
    Coyote

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     Post subject: Re: I can't even...
     Post Posted: Wed May 23, 2018 9:04 am 
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    Well...Ugh!

    We too had hospital drama. We were too overwhelmed to go the omsbudsman route but if you can that's what they're for. At least the slides weren't lost.

    We did make friends with our doctors and nurses. Surgeons know more about hospital infection rates than patients can ever find and nurses know who the best doctors are. In one case we avoided a hospital our oncologist had a relationship with in favor or the one our surgeon recommended, and it was a much better experience. Oh and pharmacists! I cannot tell you how many times the pharmacist knew more about the drugs than the doctors. I was using Publix at the time. They didn't always have things immediately available, sometimes had to order, but they always had time to talk and even went so far as to ask another customer questions for us.

    In the spirit of defeating obstacles by avoiding them. I think you wrote that the origin might be colon. When you get to colonoscopys I have hard earned tips that will make life better starting with the prep prescribed to you.

    When it's time for scans you want PET and CRT. Sometimes insurance doesn't want to do the PET but it's important and working with your doctor to ask for it in the right way helps.

    And I think maybe you need this: https://twitter.com/ofalafel/status/981654427122786307

    Hang in there. We can't really know how you feel but we care and we are listening.

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     Post subject: Re: I can't even...
     Post Posted: Wed May 23, 2018 12:25 pm 
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    We have also experienced surprising levels of, if not incompetence, certainly bureaucracy. Although some of the challenges we experienced arose from making assumptions about what particular doctors would know what and not having clearly defined next steps for everyone involved. Getting clear details about who's going to do what and when and when you should hear back and how to make sure things are happening properly, that's super important.

    It sounds like you ran into the motherload of mishaps and failures, though. Like levels that the titans would be astonished by, if not getting things right was somehow a worthy accomplishment.

    But one of the things I took away from your post, as frustrating as this experience must have been, was your point about buildings standing and planes flying. For all that people manage to screw things up occasionally, it is impressive the complicated things that get done on a regular basis that we usually don't notice. I mean, I don't particularly want to get on a plane at the moment after just reading that litany of foul-ups, but I'll probably be unfazed if I have to do so next week. Because people can be amazing and do amazing things.

    But you should still double-check their work. ;-)

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     Post subject: Re: I can't even...
     Post Posted: Thu May 24, 2018 4:13 pm 
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    Hospitals are like another universe. I've learned this from my dad's experiences and my aunt's experiences. You really need to make friends with the nurses and any technicians you might deal with. They are the ones who make sure things happen properly. Also, the patient advocate is your next best friend. As much as you probably don't want to, it's also important to be nice. Even when the people around you are incredibly stupid.

    True story: My aunt had a stroke, couldn't use both hands, couldn't swallow properly, and the hospital food service gave her chicken on the bone and whole vegetables. This wasn't a food mix-up, it's actually what they marked off for her diet. Prior to seeing this, the nurse on duty had mentioned that my aunt wasn't really eating, and only wanted ensure. When I showed her the food my aunt was given, and pointed out that she couldn't feed herself, things changed. Quickly.

    Just remember, you're not working with thinkamancers...you can curse them out all you want. In your head. Silently.

    Things are horrible for you, and I am truly sorry that the medical system seems hell bent on making things worse, instead of better.

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     Post subject: Re: I can't even...
     Post Posted: Fri May 25, 2018 2:19 am 
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    You are very brave to share your life. I wish you the best.

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     Post subject: Re: I can't even...
     Post Posted: Sat May 26, 2018 6:46 am 
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    Argh, I am so mad right now.

    Worst thing that happened to me in a hospital was taking my baby there with a problem, and after FOUR DAYS as an inpatient, no doctor had yet come by. At all. I went “bad cop”, said we were leaving, and then a doctor appeared..

    _________________
    Designer of Heroes & Treasure, a family-friendly FRPG board game featuring the art of Xin Ye!

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     Post subject: Re: I can't even...
     Post Posted: Wed May 30, 2018 3:25 am 
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    Wow, that sounds incredibly frustrating. I cannot imagine what that would be like to go through on top of everything else. Hopefully things go much smoother from here on out. You did the right thing following up and seeing things through though. Imagine, or rather don't imagine, what might have happened if you didn't keep on top of it. I'm not a doctor or anything, but I would say that getting testing done to find out what exactly is wrong is a big step to setting things right.
    Speaking of setting things right, being a religious person myself, I'm wondering what other steps you are taking to see yourself through this? I absolutely believe that getting the best possible medical care is vital to overcoming such a major health issue, but I also believe that there is additional help to be had if we just know where to find it. I'm LDS (short for being a member of The Church of Jesus Christ of Latter-day Saints. Members of the church are often called Mormons, but LDS or Latter-day Saint is more accurate.) and I know that God has made a special way for us to receive blessings from him including blessings of healing, called a Priesthood Blessing. Now before people accuse me of proselytizing and ignore me completely, I'll stop myself right there. If anyone wants to know more they can ask me personally or check out one of the church's official websites, Mormon.org.
    All I'm saying is that I want you, Linda, to get the best possible care, and I personally believe that there are things beyond medicine that can work with your treatment to help you recover. It would be irresponsible of me to have something that I know can help and not offer it. If you aren't interested, that's fine. I'm not even asking you to take my word for it. As with anything in my church, we invite everyone to ask God for themself if what we share is true. In addition to that invitation, I do ask one thing. Regardless of whether you are religious or not, please ask yourself this question: "What possible harm could this blessing cause?" If it could harm you in some way, then don't do it. If it wouldn't hurt though, why not try it?

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     Post subject: Re: I can't even...
     Post Posted: Fri Jun 01, 2018 8:02 am 
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    Wow, that's a lot of failures. Maybe some Luckamancer was saying
    "We need all the good luck for Linda's healing, so let's move the bad luck to something of relatively low importance and let's drag it out to increase its capacity". ;)

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