Tuesday, September 10, 2013

Pain


Part of my getting my shit together plan is to come to terms with the past and resolve any conflicts while looking ahead into the future. At least that’s what it says on the list.
Well, I’m not exactly going to do that.
I have one personal conflict in the family with my mother-in-law. It doesn’t bother me in the least. I’m not in need of patching things up just in case one of us were to pass on. It is what it is.


However, I thought I would just write something about the time I was ill, just to get it out. I don’t like to talk about it. I don’t even like to think about and avoid the topic altogether if anyone asks me about it.
I started to think about it again after reading an article about pain. You see, pain was my most dominant symptom.
The article which appeared in Gazeta Wyborcza’s supplement Duży Format. Wyłam z bólu. Oni pytali: co za śmieć tu leży? is the title of the interview of patient Anna Kleszcz by Grzegorz Sroczyński. The title in English would be “I howled in pain and they asked: what’s this piece of trash lying here?”
“Przez dwa lata prowadziłam prywatne śledztwo, na ile powszechne jest to, co mi się przydarzyło. Tortury w polskich szpitalach są niestety zgodne z prawem.” (“For 2 years I have led a private investigation of how common it is what happened to me. Torture in Polish hospitals in unfortunately in accordance with the law.”) Anna Kleszcz is fighting so that what happened to her and still happens to other parents each day will change. I wish her all the best. After reading her story, I felt like I knew her.

Ms. Kleszcz suffered from an abscess on her spinal cord. I cannot imagine the pain she suffered, but I can identify with what I can only call cruelty of the medical personnel which by not easing her pain, in fact, tortured her until she lost consciousness and almost until she lost her sanity. It reminds me of one of my doctor’s commenting to the other, “Do something. You are turning this poor woman into a crazy person.” And crazy with pain, I was.
In my case and in Ms. Kleszcz’s, the hospital did not lack the drugs or the means to administer them. The drugs are neither expensive nor addictive. They simply lacked normal human decency, and it is not an isolated incident. Ms. Kleszcz has the data to back up her claims. Additionally, she is collecting cases of patient suicides. People of all ages some with serious illnesses, others without, all sharing in pain, throwing themselves out of hospital windows or down hospital stairs. This is the determination and desperation of patients to end not their lives, but their pain.

I’m not surprised by Ms. Kleszcz’s shocking treatment. I was once that crazy lady writhing and screaming in pain in many a Polish hospital and no I’m not referring to giving birth. For that you scream in pain for awhile, but soon it all goes away and you get to go home with a baby. I just got, “We don’t know what’s wrong with you, but we suspect it’s all in your head.” Then they write on your release papers that you’re sick in the head but in Latin. You take those papers to the next doctor who starts out prejudiced against you and that’s how you go without diagnosis or treatment from doctor to doctor, hospital to hospital.
In the hospital they ask you to stop screaming, then they tell you sharply, then they start screaming. After that they send in the head shrinker. In my experience when you tell the head shrinker to go and fuck herself, you’re not any closer to getting the pain meds you need, but I did thank her (give her the finger) for suggesting meditation and acupuncture. That was right after I begged her for mercy. She showed me none.
I was tested and examined inside and out over more than a year. Every orifice was probed and if you could camera in there, then they did. They even cut some pieces from some pretty strange places and tested them but all was normal except the pain, the pain which kept growing stronger and encompassing more and more of my body.
In one hospital when I told the doctor that my bladder hurt (the main, but not only source of my pain) she said it was impossible. I insisted. She laughed and asked, “How do you know it’s your bladder?” I pinched her arm hard and twisted. She screamed, “Ow! What do you think you are doing?!”  I asked, “Did that hurt?” She shouted, “Yes, it hurt! You pinched my arm!” “How do you know it’s your arm?” I asked. That doctor didn’t help me either.

Countless doctors visits, hospital stays, tests, procedures, research. After 2 years of constant and increasing pain,I could tell you what I didn’t have. I didn’t have stomach ulcers, diverticulitis, stomach cancer, intestinal cancer, or bladder cancer. I did not have ulcers on the inner bladder wall nor bacteria embedded in the wall. There definitely was not a parasite of any kind in my bladder, stomach or intestinal tract, believe me, you don’t want to know how they check it. Additionally, I did not have TB of the kidneys, an ailment I did not even know existed. Although a very stupid ER doctor diagnosed me with kidney stones, my kidneys (as well as my liver) were all clear. Incontinence was not a problem either and bladder capacity seemed to be normal, well, normal for me (no gold medal bladder awards for me even before I was ill).
What did I have? Constant pain, at first starting in my bladder and then taking over practically my whole body along with the never-ending urge to urinate. Add to that intestinal spasms and the slow numbing of my backside and thighs and I was a wreck.
That’s the first time I ever thought that life was too long. I had ‘lived’ 2 years already with this pain and I couldn’t imagine living 2, 3 or 10 more. I didn’t sleep. I couldn’t. I barely ate or drank. I daydreamed about death the way people dream about winning the lottery. But just like the lottery, winnings rarely come right before you spend your last penny, and quick and painless accidental deaths rarely come to those contemplating suicide. I was gonna have to take matters into my own hands.
And I will leave that subject there.

I traveled all over Poland for treatment. I also went to a private hospital in Germany which sent me back to Poland untreated but on the right path to finding a proper diagnosis. I finally found help with doctor #28. Despite my informing him that the medical community was a kurwidół and all doctors were kurwy, he still treated me. (translated to whore’s den and whores – such a proud moment of speaking Polish but I was too sick to enjoy it) He told me what he thought my problem was based on my symptoms and test results. He suggested a treatment method and a time frame. His plan included pain relief. It took almost 5 months before any noticeable change took place, but while taking the pain meds I could sleep a bit. I could eat. After one year, I could smile. After a year and half we starting a weaning plan. After 2 years I was pain-free and thinking about children. I’ve had one relapse since then which was taken care of in a matter of weeks of treatment by the same doctor. It’s a pity he was not doctor #1.
There it is. I’ve got it out.




15 comments:

sixteen.jones said...

Dlatego przestałam odwiedzać lekarzy w ogóle. Za każdym razem czuję się jak hipochondryczka, która niepotrzebnie zawraca im głowę :/

Anonymous said...

Hi Chris,
Is it possible to send you a private message? I can't find your email address on your blog and I'd like to write you a few words:) Cheers

Chris said...

sixteen.jones - I couldn't agree with you more. And don't dare ask a question or tell them you read something on-line.

Anon - Hmmm. I should have a KS e-mail but I do not...yet. I have an idea. Go to an old post (any random post more than 2 weeks old) and leave a comment with your e-mail address. It will go to moderation. I will send you a message and not publish your comment so as to keep your e-mail address private. Sound good?

Chris said...

Anon - Moderated comment received. Message sent to you. If it is not in your inbox, check your spam.

fiona_apple said...

I'm crying, Chris. Constant pain is among the things I am most afraid of. I have only one question - how can people do THIS to other PEOPLE???

Marek Cyzio said...

So...

Poland - my wife's brother had a surgery, he was in pain. Acetaminophen a nurse gave him was not helping. My wife recommended he should get morphine. When Polish doctor heard that, he said "are you a drug addict? we only give morphine to terminally ill patients! It has to hurt!".

USA - my dog had back surgery. Poor baby. We went to see her in the hospital the next day. They did let us see her for only 10 minutes as they had to disconnect her from her morphine drip and they were afraid without it she may feel some discomfort.

Yes. Dogs are treated better here than humans in Poland.

czarownica said...

Really sorry to read that, Chris.
Lack of standards, guidelines and protocols in Poland - that's what it is all about. A private dr's opinion doesn't matter when they have to stick to the above. And if there are strong means of controlling their professional behaviours.
NICE and GMC in the UK and all clear. And it's not affecting freedom of individual approach to the patient - one may depart from guidelines or protocols, but one must justify and record it.

Chris said...

fionna - I don't know how or why they do it to other people. There has to be a benefit (in the system) to not alleviating people's suffering or some disadvantage if they do. There must be some kind of motivation behind this behavior. I can't believe it is pure apathy or cruelty.

Marek - Well said and very sad. It seems that opiates frighten many doctors here in Poland and they think they are immediately and deeply addictive which if I understand correctly are not with short-term use. And anyhow, so what if they were addictive. The patient, the fellow human being, is suffering needlessly.

czar - Doctors in Poland in my opinion don't need an invitation to go off protocol. When it is too their advantage (and often in patient's advantage) they do it. I don't believe some official protocol is preventing doctors and nurses. If that was the case, the doctor most certainly would say. One of the 1st phrases I learned in Poland besides the vulgar ones was "przepisy są". I don't think it is money either because in my experience the hospitals put there cards on the table. Protocol is needed to ensure patients access to pain relief. Do you have a person in the UK called "Patient Advocate" who works at the hopsital?

czarownica said...

No, I meant that in Poland there are NO clinical regulations re treatment at all, there are only recommendations by specialist medical societies, but they're not obligatory. There are only stupid NFZ ones re prescribing limits, etc.
Polish drs are using the threat of losing independence of their clinical decisions as an excuse against introducing any rules whatsoever. Many reasons for that, one is the influence of big pharma for sure.

Yes, there are PALS in the UK - Patient Advice and Liaison Services - in every single hospital. They may help you even to log in a complaint against their employer!

Edi said...

Chris. So sorry you had to go through so much. Cudos to you for perservering. Let's hope that never happens again. Stay healthy!

Chris said...

czar - Those same doctors who claim to fear the influence of big pharma are persuaded by the reps to change the details of the public tender so our pharma company can win. Here's your discount and trip to Paris and please write in the tender that the syringes must, absolutely must be yellow -'cause we sell yellow ones, ya know. All that work, money and effort on something that has no impact on improving the patients' health.

Edi - Thanks. All is cool now :)

czarownica said...

I know, Chris, I know.
For some reason I'm not there.

Rose said...

holy crap Chris! This goes far beyond an unsympathetic bedside manner. You have been treated so awfully. I'm glad that something helped finally- you had such stamina (or maybe it was just the desperation) to keep on looking. I also live in POland and had twins here last year, so I know the medical system here and some of the abusive practices that go on. You have my wholehearted sympathy and admiration (and if you're ever in Warsaw, I would happily invite you for a beer- I'm a long time reader of "Kielbasa Stories".)

Chris said...

Hey Rose - Thanks for the dose of sympathy and admiration :) Congrats on the twins and surviving birth in Poland. I'm gonna check out your blog and if I am ever in Warsaw I will take you up on that beer. Misiu found an article today that said that a beer a day has a positive impact on bone density, so all the more reason to drink!

Chris said...

And I forgot to mention that I haven't gone AWOL. My laptop had some malfunction and was at the repair shop for over a week.