Guilty, Until Proven Innocent By Kelly

On June 6, 2011 I faced just one of many judgement days.  Most people are only judged one time, before God when they pass.  However, people who live with chronic illnesses are forced to prove themselves on a daily basis.  When I was given my AS diagnosis I learned from that day on that I was always going to be guilty, unless I was able to prove my innocence.  

 

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You see, on that day in June I woke up in the middle of the night in excruciating pain.  Now I live with chronic daily pain, so when I wake up in the middle of the night because of acute pain I get nervous.  This particular night the pain was so severe that I knew I couldn’t just deal with it, so after debating with myself for about an hour I made the decision to go to the ER.  When I arrived at the ER there wasn’t another person there, so I was immediately taken back and put in a room.  My blood pressure was sky-high and the dr told me they could not give me anything for my pain until I went for a CT scan.  For the record, it is extremely hard to lay flat and still while you are in the worst pain of your life.  I never thought I would get through that scan, but I did, and when they got me back to my room I asked for something to get rid of the pain.  I was crying, vomiting, having hot and cold flashes, and I just knew I was passing a kidney stone.  The dr gave me something then left.  Well that something was not enough and my pain didn’t wane at all.  Instead it seemed to get worse, and when I asked for a different medication I was told no.  My husband then tried to go to bat for me, and the dr decided to tell him no as well.  She told him that she knew I was here only to get drugs.  Yep.  Apparently this dr had figured me out.  She had known me for all of 5 minutes and she already knew that I was a drug addict.  I purposely woke my two preschool children up at 3 in the morning, woke up my father so he could watch my kids and then forced my husband to rush me to the ER because I just HAD to have drugs.  Why is it that I am automatically guilty of a crime because I can’t handle the pain my body likes to put me through?  Would this dr have acted the same way if I had been her daughter?  What if I had never been given a diagnosis, and didnt take medications at all, would I still be drug seeking?

Luckily for me the pain started to subside on its own, and I knew the second I passed that kidney stone.  I wasnt quite back to normal pain levels, but close enough, so I asked to be discharged.  The nurse told me that the scan was normal, and that there was no evidence of a kidney stone.  The dr did not say another word to me, so I left and life went on, until yesterday when I picked up my CT scan report from that ER visit.  When I opened the envelope I almost began crying.  Right there on the paper it said there were several large stones in each kidney, and that I also had a large umbilical hernia, and the biggest shocker was that I had fatty infiltration of the liver.  I had to read that report about 5 times before it sank in.  This ER doctor sent me home making me and my husband believe that there was nothing wrong with me, that the pain I had was probably from my AS, when in reality I did have stones that were passing, and my liver was in bad shape.  I have never once been told my liver was not healthy.  How in the world can a dr take someone else’s life in their hands?  Had I not picked that report up who knows how long it would have taken for me to find out that I had fatty liver?  How many stones would I have passed?  What ifs continue to float in my head and they are all scary. Instead of that dr upholding her oath to help others, she judged me.  Not only did she peg me as a drug seeker, she also did nothing to help me get better.  Her job should have been to tell me the results of the scan and to give me steps for getting better.  She should have been compassionate, she should have tried to walk in my shoes for those 5 minutes.  But that is not what she did.  Instead she added another cut to my soul.

 

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I will have this disease until I die.  It is lifelong, chronic, painful, and it has no cure.  If you take your sick pet to the vet’s office they will immediately give your animal something to make them comfortable.  That day I was not even given the same treatment a dog would have been given.  Where in the Hippocratic oath does it say it is ok for doctors to pass judgement on their patients?  Where does it say that it is ok to assume the person sitting in front of you writhing in pain is faking it?  Why do I have to prove to every dr that doesn’t know me that this disease is real, as is the pain.  I did not ask for this life, for this disease and its complications.  All I have ever asked as an AS patient is that my doctor’s do their best to make my life as comfortable as possible.  Sadly they have mostly done the opposite.  I am a slave to doctors now, and I will always be.  My acute pain may come and go, but my chronic pain will be with me every minute of every day, and I should NOT be punished for being sick.  If I walked into that ER and told them I had cancer I would have been treated differently.  As a patient all I ask is that medical professionals treat me the way they would want to be treated.  I want the same treatment they would give their own daughter, mother or spouse.  I will try my best to suck it up and deal with the symptoms to the best of my ability, but if I have to go to the ER because it becomes too much, then please don’t judge me.  Dont assume you know what my life is like, or that you know who I am.  I am only guilty of having a disease.  I am only guilty of being selfish enough to not want to hurt anymore.  If you want to judge me because I choose to take medications that take my pain away and allow me to live a somewhat normal life, then that is your problem not mine.  I will never be ashamed or feel guilty because I have to take medications to stay active.  The medical profession has made so many leaps and bounds when it comes to therapies and medications and tests, but to me, it seems like they are all stuck in the dark ages, because very few actually act like people.  Very few treat their patients the way they should be treated.  Instead those of us who are sick have become bothersome, annoying, and something that is cutting into their lunch break.  Let’s just say that I wont be going to the ER ever again….

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17 Responses to “Guilty, Until Proven Innocent By Kelly”

  1. dlmorningstar Says:

    Sadly, this has happened to me more than once. I don’t know why it took me more than one time to decide never to go to the ER again, but I have attempted to get help from them a few times with the same result. I think that I have had too much faith in people in the past. It has been years since I have gone, though, and now I will be doubled over, sweating, with hot flashes, and vomitting, and I will die before going there! Such a horrible decision to have to make!

  2. I know this while thing so well…i live the guilt, the shit I get from my family, all if it. Shame on all of them!

  3. I’m so sorry you were treated that way! You might report the doctor, not just to their ER manager, but to the hospital administrator.

  4. Having lived from this, I thank you for putting it in words for us to all understand and learn.

  5. Jason said:

    July 9, 2011 at 8:51 PM

    Wow, I can relate. W/my RSD, there’s no ‘cure’ all that can be done is a combo of meds&treatments to make me a little more comforatable.

    Yet recently, I’ve been being treated as if I’m some weak faker who’s just seeking drugs to get high on. To be fair, I know my dr doesn’t speak english as a first language, and that the office just recently changed a LOT of things [how they keep records, front office staff, had a dr retire etc.] But still, the front office refuses to help, only 1 nurse is compassionate and 1 dr [who I can hardly ever see]. Then when I see MY actual dr, its almost like she doesn’t want to spend the time to see me, and just rushes me out the door. God Forbid I ask to adjust my meds or change them to comabat new symptoms.

    I’m sorry you have the same struggle, but I’m glad to know I’m not the only one.
    ~Rev. J

  6. Doc ForthePeople said:

    July 9, 2011 at 9:03 PM

    It is sad that this well told story is repeated countless times across this country. It is worse that the doctors who choose to believe the pain sufferers are hounded out of practice, and those who disbelieve and thereby misdiagnose and mistreat the pain sufferer go on about their merry way with no sanctions. I have had kidney stones (but without a chronic condition) and I could tell some less eloquent stories about my encounters with the prejudice of health care providers. I have also seen horror stories of the misdiagnosis of pain sufferers because of the prejudice against them because of their chronic disease. I for one apologize on behalf of the caring members of the medical profession..

  7. Maureen said:

    July 9, 2011 at 11:12 PM

    Wow! I saw this post on Facebook and I am glad I took the time to read it. I think everyone has a bad ER story to tell, but this one takes the cake! Have you talked to this “Doctor” since you reviewed your test results? I would want to complain (tattle) on her to someone. I hope you are feeling better.

  8. Lisa Raper said:

    July 9, 2011 at 11:35 PM

    I hope you filed a complain with the state medical board for this one. I filed once and was told since there was no proof they could only but a remark on his file. You actually have proof. Further more, I would try to make an appointment with said doc and tell her in person where she got it wrong. You could send a letter also which included copies of the test results. Why? Though it might make no difference in how you were treated, it might make her think twice if she comes across another patient in pain again. Or God forbid, you end up seeing her again. I have myself done this before and prayed God would change their hearts to ones with compassion. Perhaps there is another ER close by? I have a back-up ER I prefer over the closest one. It is a Methodist Hospital and they all seem to care more. Perhaps because they as employees are also treated better. The closer ER is doctor owned. They take no insurance and the staff is over worked and under payed. It shows in their care too. I was never turned away from pain. A nurse did pull me aside though and told me to get a pain doc asap as if I continued to come to the ER they might refuse treatment. I was in a bad place then and was there quite a bit for a short spell right after being dx’d and the stress made all of it worse.

    I am so sorry you experienced this. Though I relate. To all but my Dad and Husband I too am a drug taker as I choose to take pain meds myself. It has been proven that women are more sensitive and aware of pain than men. We are wired differently. Which explains why as patients with AS, more women seek pain management than men? My pain doc tells me that he has more than a dozen women with Spondylitis, but no men. I know this to be true though, without pain meds, I would be immobile and non-functioning. They at least allow me to do the things I need to do. As opposed to not being able to do anything. They made a huge difference for me. I fought many people over the decision including a few doctors and a lot of family and friends. Most of whom are no longer supporting me. That is okay though, I am fine with who I am and the choices I have made!

    Thank you for writing this blog and helping us all. May you be blessed.

  9. April Anjard said:

    July 10, 2011 at 4:19 AM

    Thank you for writing this….we are slaves to doctors. Doctors that do not seem to care and dismiss your suffering with a wave of their hand. What can we do? We have to suffer them in order to get treatment, any treatment. Im sorry you had to suffer what you did and Im surprised you didnt sue them for malpractice! Im sorry for all of us that have to suffer these un- empathetic doctors that should have to feel the kind of pain we feel on a daily basis…..then maybe they would think different.

  10. Doc ForthePeople said:

    July 10, 2011 at 12:05 PM

    May heart and soul ache for all pain sufferers who have been so mistreated. Every one of you should speak up and complain about your mistreatment. However, keep in mind that doctors have been intimidated by overzealous regulators who seem to be acting on behalf of the addiction community. Doctors legitimately fear losing their licenses or being severely financially penalized with exorbitant legal costs to keep their license if they do treat pain patients. The chronic pain patient, via attacks on their treating doctors, has become the sitting duck target in the war on drugs. Not until that scenario changes will pain patients receive legitimate treatment for a real disease.

  11. Rachel Alquist said:

    July 10, 2011 at 11:00 PM

    I had a similar story but without the kidney stones. Due to the Remicade, I have no immune system. I got the stomach flu and couldn’t keep my pain meds down. I ended up going to the ER because I collapsed due to pain and exhaustion.

    When I got to the ER, the first thing the doc said was that they couldn’t give me pain meds. I promptly told them that I had my own pain medicine, I just can’t keep anything down to make them efficient. I also am allergic to anti-nausea meds so I needed their help.

    It made me so frustrated that they immediately jumped to the conclusion that all I was there for was pain meds and nothing else. They finally released me after basically doing nothing. When I got the results in the mail, I found out that I had being going through internal bleeding and high mercury levels.

    I absolutely HATE the ER but sometimes it is the only option.

  12. Susannah said:

    July 11, 2011 at 12:46 AM

    First of all – Hi! Just found your blog today through a link on facebook.

    I’m so sorry to hear what you went through at the ER. It’s just completely unacceptable for a doctor to jump to conclusions about a patient BEFORE they have even done the tests necessary and are sure they have all the information – particularly someone who is genuine chronically ill with a condition which causes pain.

    I do understand how easily ER docs must become cynical about patients because honestly, there are so many people who DO go to them seeking drugs just to get high, or to feed their habit. And it must sometimes get difficult to tell the difference between them and the genuinely ill patients in genuine pain, who genuinely need their help. And I feel some compassion towards them on that score, because it’s a hard job they do. Having said that, it’s no justification for treating people the way many of them do!!!

    As you say, they all too often tend to go by a guilty until proven innocent premise, and by the time the patient IS proven innocent, it’s all too often simply too late TO help them. And it’s not the way medicine should be practiced. Doctors need to learn the art of communication, and listening… not to mention empathy and compassion, to counteract the cynicism, apathy, and criticism that can so easily set in.

    Hope it’s ok with you … I added you to my blogroll. We seem to come at dealing with our illnesses in a similar way.

  13. Kelli said:

    July 12, 2011 at 12:52 AM

    The exact same thing happened to me in the ER! EXACT! Kidney stones, drug seeking accusations, tests that confirmed I was right and they still mistreated me…the whole nine yards. I am with you ALL the way! I told my family I will die before I go to the ER again. The medical care giant is a disgrace. Thank you for telling your story.

  14. Joseph “Andre” Moore said:

    July 12, 2011 at 6:55 AM

    Will you please!!!!!!!!!!!!!!!!!! Call me tonight or tomorrow night at 770-570-8123 because this is exactly what I have been through and I would so love to talk to you about AS (which I have) and how you are treating it. I have tears down my face right now there is someone out there going thru what I am going thru. Please call…if you dont have free long distance…I will call you right back!

    Joseph Andre Moore

  15. hurtingbuthopeful said:

    July 18, 2011 at 7:45 PM

    Are you on Facebook? If so there are lots of people like me, with AS, on my group called ASAP:Ankylosing Spondylitis Awareness Project. I hope you join our group, and I hope it brings you lots of hope and friends and happiness. Thanks for reading my blog and commenting, it means a lot. Take care, Kelly

  16. Shelley Leppaluoto said:

    July 14, 2011 at 6:23 PM

    It took 2 years and degen disc disease in neck, liver problems, both si joints are going, fusing, and now loss of feeling and movement in left hand .The doctors now treat my pain and try to keep me somewhat comfy, but that was not always the case 2 doctors called me a drug addict with drug seeking behavior and almost kicked me out of their care( it is free treatment as i have no health insurance) but i keep them running test proving that i am truely ill. It was not easy now even they feel conpassion. Today I have a great doc.Please dont give up you will find someone, a doc that does understand ,cares, and wants to help.we are not drug addicts or bad people, we are people who are very sick with a very scary illness.you are not alone.please email anytime this is my first time at this as my husband wants me to talk to others like me. This is the most scared i have ever been

  17. empangeni accommodation said:

    August 1, 2011 at 2:30 AM

    Its like you read my mind! You seem to know so much about this, like you wrote the book in it or something. I think that you can do with a few pics to drive the message home a little bit, but other than that, this is excellent blog. An excellent read. I’ll definitely be back.

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