Monthly Archives: February 2015

Honesty is not (always) the best policy

You-should

I learned quite some time ago that two (or even more) conflicting emotions cannot coexist at the same time; I didn’t just read it somewhere, I felt it on my own skin. This proved to be true once again in my last ordeal with the upper part of my GI tract – I was horrified of what I was feeling, horrified of the exam necessary to detect any possible problems, and eventually horrified of the worst possible outcome. Essentially, it was even worse than that – I was totally petrified. When you experience such an intense degree of fear, you can’t be either sad or happy or angry at the same time, all else vanishes from your focus. Once the fear subsidies, other emotions can resurface again and take that fear’s front row place. That’s a very powerful tactic for dealing with panic disorder – whenever any other emotion overpowers you, fear retreats and panic is kept at much safer distance.

In my present reality, as soon as I got my biopsy results and figured out that there are some tissue changes, but nothing that much alarming, I felt a tremendous relief. It seemed such a positive thing at that moment, it felt wonderful, even though I still can’t get rid of my stomach issues. It wasn’t long before the relief was replaced by the sensations of grief that come and go, alternate constantly like ebb and flow. Suddenly, it’s something I do or something I say, an item that I hold… memories of my dad keep coming back and sorrow and tears overcome me. Then it gets better, I get distracted, but not for long.

As if it weren’t enough, I have lots of financial issues as well in this truly post-traumatic life, as there is no longer any of the dad’s income. I do receive a very small amount of money for some occasional jobs I do from home, but that’s hardly enough to make things better. This month I worked a lot, as a matter of fact I worked for hours even on the day when I received anesthesia, in spite of the recommendations to relax for the rest of that day. Today I merely asked if there would be any payments in my favor because February came and almost completely went without any income for me at all.

I was just wondering you know, I have bills to pay, it’s quite hard, I said. The reply was – Well, if it’s hard, then go and politely ask the boss to find you some other PROPER (for this woman that means office, not home based) job, because you’re not doing much for the company, you know. No payments this month for you. That’s not fair, I said, I did work a lot this month in spite of having health issues. Health issues? Your health issues are nobody’s concern, we all have issues – so what?

WOW.

My thoughts wandered back to that bed in the GI department and to the moment when the anesthetic was injected. I could have died right there, many things could have gone wrong, I signed the consent. Yet I woke up seemingly undamaged and rushed home to do some important things that could have created serious problems in case I hadn’t waken up. Nobody else has the access to that information, nobody else knows the e-mails and passwords. Nobody there speaks English at this level, which is necessary for dealing with their important papers. Oh yes my dear, you would have had tons of serious concerns if I hadn’t waken up. On the other hand, thinking of how easily the movie of my life was interrupted by that anesthetic and how peaceful and calm that darkness I slipped into was, maybe it would have been much better if I hadn’t waken up at all. This way, I got right back to that same sea of fears, panic, uncertainties, sorrow, pain, not eating, not sleeping, not truly living, having no idea how I will go on from here.

PD is an expensive illness among other things, as I once said. That anesthesia cost what is for me lots of money, but without it I would have never completed the exam and the GI team would have had to deal with stopping a panic attack instead of inspecting my intestines. I worked precisely to earn so that I could prevent the attack, so that I could “bribe” my illness to spare me from its ugliest pits. How wrong I was.

I am used to people being rude and I do know there’s a harsh world out there, but in these circumstances I’m more vulnerable than usual. Also, these poisonous words came from a person who knows me for many years and knows all about my loss. I didn’t ask for pity, sympathy or empathy and I never would, I just wanted some retribution for my work that I duly deserved in my opinion.

It was also recommended to me by her to take some “calming” pills as it’s not normal to be sad that long (5 months is so abnormally long?), and she added that I SHOULD pull myself together and not go around visiting doctors whenever I feel an ache or two.

Calming pills for depression? She has obviously never hard that such medication depress your nervous system even more. Secondly, it’s a very bad choice of words to say to someone who has anxiety to pull oneself together – we so desperately want to, but how do you do that? Shake your head to left and right, button up your shirt and go out to the big bright world magically cured? What are those pieces of me that are scattered away and that have to be reassembled again, pulled together? Has anyone invented a glue for sealing back together the pieces of a “broken” mind? But people still love to pass on psychiatric advice, even without any firsthand or circumstantial knowledge about such issues.

What she doesn’t know is that those as she calls them calming pills have been my companions and life saviors for two long decades even at the best of times, let alone when I held with my both arms a person who was terribly choking and fainting and eventually dying right there in front of me in my arms, and there was nothing I could do to prevent it. An ache or two? I hardly eat for more than three months, I lost even more weight, I live with constant arrhythmias because my swollen stomach irritates my heart, and I have 4 different gastric diagnoses after the endoscopy. It took me one hell of a courage to go back to the GI department, I postponed it as much as I could, because my dad was counting his last pre-palliative days surrounded precisely by such doctors. I went there 3 times, endoscopy included, so much for constant visits… who on Earth would want to go visit their worst nightmare every other day or so?

Conclusion: I shouldn’t have asked for the payment because it wasn’t coming anyway, the only thing I managed was to ruin my day and end up sadly pondering about the future.

I made one resolution – not to discuss ever again how I feel physically or emotionally with any person in my real life (apart from my mother). They will inevitably ask questions, but “fine, thanks” even in the worst of times will do just fine. I’m well aware that such a decision can isolate me even further from my immediate surroundings, but at least it will spare me from any newly inflicted pains or judgements.

What people in situations like mine dislike the most are surely statements beginning with YOU SHOULD…

You should overcome your loss.
You should get better, it’s high time.
You should take pills to calm yourself down and move on… i.e. pop up a benzo and chill out, somebody died, so what? (it’s important that they’re still alive and kicking, why should they care about others?)
You should do something about your life, you know. (Really? I’d never guess…)
You should earn more money immediately.
You should marry, a husband would take care of you.
You should take your father’s place in all the chores he was involved in… etc. etc.

i.e. :

Tanja, you should do something entirely different from what you’re doing right now. You’re wrong about everything you do. YOU SHOULD CHANGE. COMPLETELY.

My message to all of them – Guys, I “appreciate” your constant reminders of my “faults” and I know those shoulds very well myself – but I have my own pace at which I can or cannot do something. I should probably do many things, but sorry guys, I’m unable to at the moment. RESPECT IT. I can’t change to be someone else. I don’t want to be someone else. Maybe I don’t even want to change everything in my life. Maybe I’m just trying to survive and doing my best, that didn’t cross your minds?

If someone thinks that he or she can live my life better than I do, I’m very willing to exchange places. To put that someone temporarily in position to suffer from panic disorder the way I do (happens only to 2% of world population at most), lose one of two closest persons in life to cancer after taking full personal palliative care of that person at home with no real medical means at all, eat just a bite or two here and there, sleep just a couple of hours at night being constantly awaken by burping and arrhythmias, suffer from hypothyroidism with almost inevitable surgery of the thyroid, have very limited means for basic needs in life, work without sense and have no friends in real life, mainly due to PD.

If someone can live such life better than I do (and I think I fight very much every day), I’d truly congratulate them.

No problem anyhow, I’m very used to being alone in what I do and how I feel, it’s nothing new to an only child like me. If that’s a price to pay to be calm, to avoid being honest about what happens to me and how that feels, then for me in this case honesty is definitely not the best policy.

Upper GI endoscopy

Coming back here wasn’t an easy thing to do. It’s been 3 months since my last post, which is not such a long time from the usual perspective, although it may seem like ages in certain life situations. It wasn’t grief that kept me away, grief was and is still here like some dark shadow hanging over me, and you know what – it’s not improving with time. It’s quite a sad and tough job to be still here living this post traumatic life and trying to make all those loose ends meet in any meaningful way, it’s very hard even without all the complications I had to face lately. My mom hurt her hand very badly and wore a plaster for the first time in her life. Brother of my dad’s best friend was diagnosed with cancer and endured two operations so far. My uncle and my aunt’s best friend both suffered strokes. Two good people I’ve known for quite a long time passed away. And on the top of all that, I started having some very weird upper GI problems myself. Pains in the middle of the chest stabbing backwards through the spine, heart skipping beats, tons of air in the stomach and burping. The only moments of peace were when I avoided food completely, but I still burped, even in the bed. Things got from bad to worse, I had some constant feeling of “there is something stuck in the middle of my esophagus…”, so it began to seem pretty plausible to prepare myself for joining dad some time soon.

Everybody was prone to say that it was “stress related” (stress is pretty much overrated if you ask me, perfect excuse for “I don’t have a clue what is going on with you” situation), even though I have very rich 20 years long “dealing with stress” experience, and even in my worst panic periods I never burped like hell with heart skipping beats, but it just HAD to be stress. So I went to the lab and ordered a Helicobacter pylori blood test – Serbia is a fascinating country, any ordinary citizen can enter a private lab and ask for any analysis in the world as long as you can pay it, it functions like a supermarket. It came back positive. Ok, next logical step, I found a good GI doctor who put me on that horrible Helicobacter pylori eradication treatment, plus I had to eradicate Candida albicans as well. It worked like magic, I was totally exhausted but completely symptom free. Happiness lasted for about three weeks, and then it all tumbled down on my stomach even worse than before. I was at the end of my nerves with “now what”, staring at my gastroenterologist in bewilderment in his office. Well, it could be stress in the end you know… Not again, not with the stress story, please. Potent stomach acid inhibitors and some drugs to calm me down at dosages so mild that I knew couldn’t make any difference in my case. Try this for two months, he said. Two months?? No way. I was already only sitting or lying down and barely eating, so you wanted me to go on like that for two more months? I would die or turn into skeleton for sure. Well, either that or upper GI endoscopy in two weeks. Even the name of that procedure makes my nerves dance in a very hellish way.

GASTROESOPHAGODUODENOSCOPY.

No wonder they prefer to call it Upper GI endoscopy.

Firstly, I have panic disorder. Panic disorder is all about feelings of imminent dread, choking, heart beating like crazy, feeling that you’ll either go mad or die for sure… and now you want to stick something very similar to a garden hose all the way down my esophagus, stomach and duodenum and make me endure that and pretend as if nothing is happening? In Serbia it is pretty much a custom to do this to say the least pretty uncomfortable invasive procedure without sedation. So I am supposed to choke and gag (I could hear the sounds and didn’t like them at all) while you wander up and down inside me for several minutes, and you also want me to keep calm at the same time, without moving, jumping of the table, hurting myself etc… VERY BAD JOKE. I run out of buses after two stops without hoses inserted into my intestines, you know.

Secondly, my dad died of gastrointestinal cancer. One of the last procedures he endured was precisely upper GI endoscopy, without sedation. I still remember his red face and eyes that were almost popping out of the face distorted in some horror like grimace.

Ok, in that case we can do it with sedation… that’s not free. That sounded better, minus the cost. But I was never given an anesthetic before. What’s the feeling? Will I wake up? Will he damage my stomach with his “hose”? And the most important thing, will he find something… something bad…? I couldn’t decide. On one hand, living in ignorance with these cancer like symptoms is pure hell. Enduring the procedure is pure hell as well. As the days went on, the ignorance hell grew worse and worse, I had to do something to end it. Whatever. Eradicate fear with more fear. There was no other way.

I thought I was the craziest person on planet up until I met different people in the endoscopy department. That place is all about fear, uncertainty and hope. But mostly fear. Some of them were more scared than I was. When you go for an endoscopy, you have to fast. Hunger makes things worse, because your ability to tolerate anxiety grows significantly lower. There was one guy with a women there who didn’t utter a word. Judging by the looks on their faces, I was convinced that she had to do the procedure. I did my paranoid google self-training very well beforehand, so I tried to calm everybody down… but deep down there, I knew – up until I lie on that table and have my own experience, nothing that another person says can explain how that feels. Those are feelings, not words.

I walked in very hesitantly, I gave all my data, I was warned about the procedure… and I signed that I accept. That is stressful, signing that you’re completely aware of possible complications and that you still accept the procedure. I climbed onto the bed and the guy who was about to place the IV line started the small talk. I knew what that was, merely a way to engage my mind in a conversation and keep it away from the procedure, I used the distraction technique so many times to get myself out of PD pits. It was helpful, yet not really necessary, because once I lay on that bed some strange peace came over me. I knew that nothing any more depended on me. I gave up on the control, just like you do it when you jump into the water for the first time. When you’re in the middle of the jump, there is no turning back. And it’s your own jump, nobody can truly help you or do it for you. You can have a whole crowd out there cheering for you, but you’re alone in your own battle. Now what exactly happened that turned a control freak like me into a pretty calm person I still don’t know, as the guy was still only applying the IV line, nothing was yet injected. Then the “medicine man” came in. I just asked if I would be totally knocked out. Yes, he said, is that a problem? No, no problem at all, that is precisely what I want, to be miles away from all the fears, hells, problems, procedures, uncertainties. I was so so tired. They turned the main lights off, and I remember closing my eyes on purpose. I so badly wanted to sleep. Several more instants with closed eyes and my own thoughts, and that’s where the movie stopped. The next thing was the anesthesiologist asking me why I was sleeping. 🙂 Well you injected something, and you’re asking me why I was sleeping…crazy. I saw the nurse and she was smiling. I asked her when we would start. Start what, she asked. Well, the damn thing, the endoscopy. Endoscopy? We finished it, darling. I automatically did my best to check if I could feel something in my mouth, on my lips, in my throat. Zero. Nothing. Nada. This woman is joking, I thought. We took some biopsies, too, you know, she added. I was like… aaaaa? and said “Seriously???” She started giggling and everything became funny. The anesthesiologist wanted me to try to get up and then all the stuff started moving around in little flashes, in some strange funny vertigo. No way, man, I’ll fall, I said. He told me to look at the nurse and asked if I see her. Yep, but she is SOOOOOO strange, I said and laughed. The nurse laughed back, but he froze completely. What do you mean strange? How strange? AAA, I thought, this one here is checking for a possible brain damage. Well, if I look right at her, she’s fine. But if I move my eyes to the left or right, she spins and dilutes :)) She laughed like crazy at that point. He said, oh good, that’s ok :))They moved me to a bed for recovery and told me not to rise my head. No nausea, no pain, no acid, no saliva, no nothing. These people kid me for sure, I can swear and sign that they didn’t do anything. Within 2 more minutes, I sat and nothing was spinning any more. I was totally fine, not feeling crazy, not feeling tired, not feeling drunk. I felt myself, just a bit happier – weird. And very relieved that I did the wretched procedure and endured it so well. They told me to continue lying there, but I wanted to go to the waiting room and sit there. I wanted to tell all that people that there was nothing to fear. Nothing at all. I wanted to help – them. So I went out and they were amazed how ok and normal I looked. The couple was still pretty quiet, I said it was great and that I didn’t feel or remember a thing. Going to the dentist’s is FAR FAR worse, yet I like going to my dentist’s office. I sat there and talked with an old guy who unfortunately had gastric cancer, then he recovered, but things didn’t seem so well again. I cheered him up a bit and that was really good. Then an older woman came out and her daughter told me – you’re great in comparison to my mom… why, I asked? Then I saw the women, she seemed pretty drunk and cranky. 😀 It seemed that she was always cranky when drunk, so that’s how her system reacts. She was angry with the technician because they had to keep her there some more time, she wanted to go lie on her couch and have a beer or two :))

Then the couple went in. I continued chatting with the man next to me and after some time something totally weird happened. The couple came back and the IV line was – in his hand. With the other hand he grabbed my free hand and held it in such a strong and emotional way. Thank you SO MUCH, he said. It resulted that he wanted to run away and that he decided to give up. But when I said what I said about my procedure, he changed his mind. And did it. He said, I managed, but only because of you. That felt so good. He thanked and thanked me up until I was allowed to go, and that wonderful feeling will be always there in my heart. The feeling that I helped somebody, that I dissipated his fear, that I helped him “jump”.

But I’m still wondering about my own feeling when I could sit without vertigo. Something was pushing me out into the waiting room to tell the people that it was nothing. It wasn’t about me any more. I just had to do it, as if I knew it would help somebody. 🙂 I’m still waiting for the biopsy results, till Monday. There are some inflammation points, hiatal hernia, swelling… so yes, it’s not really stress. And it wasn’t just in my head. I’m pretty happy and calm now knowing that I did what I should, yet I still have indigestion and burping.

So if I can help anybody else out there, if you need an upper GI endoscopy, opt for sedation. Find a good – that means experienced doctor with a good team who did the same procedure many times and have no fears. Literally, leave your fear in his / her hands. You won’t remember the procedure at all and it may save your health or even your life, don’t postpone it if it is necessary because there is truly no reason for that.

Just to add one more thing, I read about an initiative to post blogs about compassion on February 20th using the hashtag #1000Speak spreading the kindness towards others in the blogosphere. May this be my little contribution to make this world at least somewhat kinder and friendlier place.

If you’re interested, check out this link:
1000 speak for compassion