Nov 012014
 

Dear Reader,

I named this post as I did because last time I was in Bucharest I nearly lost my life. As you can imagine, I am now in the city with my sister and my mom for more tests, procedures and alternative therapy. It doesn’t feel like perdition any longer, but I still have time to change my mind about that thought. Hopefully not (added later: I haven’t changed my mind).

For a while now, my family and I have been thinking about finding better and more open minded doctors to help my case. However, a trip to Bucharest would have been difficult. Through a strange chain of events, a person we haven’t heard of in 18 years (his name is T.) showed up out of the blue and offered to help. For a few weeks, I kept changing my mind about this trip ( I believe I was very scared). But then, more help was offered, all stars were aligned and I was forcefully dragged out of my beloved bed I was glued to for the last 10 months, to come to Bucharest.

We departed on the last Sunday evening. On Saturday, when my mom and sis were packing stuff, I asked my mom: “Do you know what it would mean if they have to split my head open for surgery?” “No.”, said mom. “What does it mean?” “It means they will have to shave my head bold.” Mom laughed and said: “Is that your biggest fear?” Of course, it wasn’t, but I was happy I made my mom laugh because earlier that day, she confessed she was shaking like a leaf from fear.

At the same time, I made Ana swear to tell me the whole truth and nothing but the truth, in case the doctors gave us bad news. My family tends to not keep me in the loop about these sort of things, because they want to protect me and not have me worry.However, Ana is always sincere and she promised she will tell me everything, especially if the doctors gave me very little time to live. “If that is the case, I would spend the last months of my life doing the most outrageous things and living my life to the fullest. “, I told my family. Surely, I was joking, mostly because we were all tense and worried.

T. and his friend, S., came for us on Sunday afternoon… and along we went.

S., Cati and The Big Red Haired Fox

S., Cati and The Big Red Haired Fox

The drive from Braila to Bucharest, in a decent car, takes around two and a half hours. What do you think a person who is blind and partially deaf can do for 2 and ½ hours in a car (since he/she is unable to join the conversation)? Well, let me tell you what I did. I counted from 1 to 900 and then backwards from 900 to 1. 900 seconds mean 15 minutes. 15+15=30 minutes. Then, I got bored with all the counting and started singing “Vermillion Pt.2.0” over and over again. Actually, I only sang it three times because I got bored of singing as well. But that meant another 15 minutes. Then, I started thinking about a post that my sis and I are going to write in the near future (that one about humanity not being dead). After a while, we reached a bumpy road and I thought to myself: “We must have arrived. Bucharest drift.”

T. keeps telling me how scientists can prove that the future doesn’t exist. He also has an interesting theory about how time doesn’t exist either. It definitely exists for me. But when asked how the drive was, I said: “Who cares, now it’s over!”

We are staying at T.’s place, somewhere outside Bucharest. The three of us thought we weren’t going to adjust and we were shy and didn’t want to impose. But we were welcomed with arms wide open and a warm, tasty plate of food. We talked a lot and I could understand him, but around 10 p.m. we went to sleep. I was scheduled for an appointment with a neurologist at a private clinic, next day in the morning. Because it is so quiet here, I slept like a baby.

On Monday, 8.30 a.m., my mom and Ana had a long talk with the doctor.Curiously, I wasn’t invited in. I waited on the hallway in a big, leathery chair. T. kept me company. It was nice of him to do so, but I still felt awkward, partly because the chair was too big and couldn’t reach the floor with my feet and, of course, other people were deciding my life and future in the next room (or so I thought). After 30 minutes or so, The Big Red Haired Fox (Ana) and mom returned. As usual, I was kept out of the loop. We left the clinic and got back to T.’s place. I felt like no one wanted to tell me anything. My mom kept offering me a banana to eat, and I kept telling everyone to talk to me for God’s sake, about what the doctor said before my grandma hears the news before me.

We set on the sofa and I was told what happened. This doctor is said to be one of the best in Romania, however, when the visit was scheduled, we didn’t know that he was one of the doctors that took part in the team that handled my case back in December. He was the one who performed the MRI with contrasting substance. My first instinct was to say: “Oh! He is the cause for my stroke, then!” If you read my previous posts, then you probably remember that the real, real stroke occurred after I was moved from Colentina Hospital to The National Institute of Cerebral Vascular Diseases, right during the MRI procedure. That is when I simply gave up the fight and collapsed. In any case, the doctor remembered my case really well. “How come?”, you will wonder. He must have had hundreds of cases after me, how come he remembers my case in particular?! Well, it is because he encountered only one similar case before me, and has heard of another one about people with so many blood clots in their brain, that is. He said that the other person didn’t recover 100%. He offered some more information that we didn’t know when we last saw him. He said that my situation was so bad, that they were thinking of cutting a piece of my brain to release the pressure around the optical nerves, and save my life. They didn’t have green light with the surgery because some of the doctors believed that it would do me worse. Instead, they gave me treatment to decompress the pressure in my brain slowly. He said that the blood thinner is usually effective only for 48 hours, after which the body builds antibodies against it; it is replaced with pills or low molecular weight heparin. I was given the medicine for 15 days and it didn’t help. (I was giving positive results while I was in Colentina, though). This is what he says, but God knows what really happened back then.

He is the only doctor that admitted that the reason for my thick blood was a mixture of factors, and the worst of them were a depressive state of mind and the constant fear and panic during the month I was in the hospital. My inactive lifestyle contributed a lot. Having taken the birth control pills during last summer also lead to the unfortunate outcome. But it is finally a fact that my general state of mind was the reason I had the stroke. No other doctor was willing to admit something like that. They all said I must have had something else in my blood and feeling depressed, scared and terrorized couldn’t cause a stroke. Sadly, they can. I am the proof.

The theory of my blood being thick will be subject for another post in the near future; we mean to make it an example of how things can turn out.

Let’s continue with what the doctor said. He looked briefly through my medical papers, especially on the results of the MRI I took in May, and the CT scan in August, and told my family that the images showed good results. There are minor lesions on my frontal lobe. The occipital lobe, where the brain cells for the eyesight are located, is mostly reconstructed. I am able to dream, even colors (something I wasn’t able to do in the two months after my stroke) and remember my dreams in great detail. He, also, suggested that I have my imagination stirred as much as possible, since it keeps my brain active. The fault is somewhere in the middle, between the eyes and the cortical zone. This is what is stopping me from seeing. The only way to know for sure is to go through a medical procedure, but that wouldn’t restore my sight. He added that I might be faced with minor memory loss and changes in my personality. But, it’s been 10 months already, and my memory is actually much better and my personality…well…let’s say I am more honest and open about my problems than usual. The doctor said that he could prescribe some medicine and send me to a psychologist, but this tends to numb the mind and make the patient a bit indifferent to his/her surroundings. Of course, if I show signs of turning into a psychopath, then, that is another story. He said that my body found a way to heal and that I should not be scared of the weird things happening inside my brain, especially since I’ve showed improvements in my hearing. He couldn’t give a logical, scientific explanation to the unusual brain activity I am experiencing, but said that people feel things differently. I just have the misfortune of being aware of my brain activity. Someone else said that this can be an advantage, since I can know myself better and observe how my brain works. The doctor said that he never believed I had a rare blood disease. So, he did not recommend taking the test to find out. He didn’t recommend another MRI either. There is no need for them. He also assured us that I didn’t have any brain syndromes,( except, of course, for the stupid brain syndrome, as I like to name the craziness inside my head) or epilepsy. However, he advised I have a healthy diet with lots of vitamins, minerals, and other nutrients to help my brain cells. A lot of movement, as well, something, I admit, I am not doing.

From the perspective of conventional medicine there is nothing more that can be done to help me. He said he believes in alternative therapy, and recommended not to be scared if I feel something. In fact, feeling something is proof that my brain is alive. He told my family that he has had lots of cases of people with cerebral thromboses. But far less than I had. If the patient is brought in time to the right doctor, then he usually recovers 99.99% with very little to no damage. I didn’t have the luck to find the right doctor in time.

Just like any other doctor before him, he didn’t guarantee my full recovery. No doctor would, unless they are named Gregory House.

That was all. In a way, I was disappointed. I really was expecting the worse. I was preparing myself for another MRI, for blood tests, needles, hospitalization, and so on. On the other hand, the doctor gave us good news. My brain is, in fact, healing. So, even if he didn’t say it, there is a chance that I will see again. This is pretty much it with the conventional medicine.

T. and a few other people he involved in helping me found a clinic in Bucharest, called JIKO Clinic. The people here practice alternative therapy. I was scheduled for the first visit on Wednesday, and then twice a day until next Thursday, except for the weekend. I am in awe. How is this alternative therapy helping me? I would like to talk more about it at the end of the sessions, when my sister and I will go back home.

Catalina, T. and M. at JIKO Clinic, Bucharest

Catalina, T. and M. at JIKO Clinic, Bucharest

Mom left yesterday, because she has to take care of two other kids: my dad and Pufi. My dad is like a 2 yr old child, he needs constant attention. Hopefully, he will now realize how much he needs mom.

I mentioned earlier, that I felt disappointed. I should add that I felt sad too. Somehow, it felt like I was back to square one. But I’ve been in Bucharest for nearly a week now, I’ve talked to half a dozen of new people, I’ve talked over the phone with dad and mom, I’ve adjusted really well to a new environment, I’ve spent hours in a car stuck in traffic, I laughed a lot and talked about philosophy (T. is like master Yoda and is trying to turn me into his young Padawan – I might not dislike being wise and talking in riddles), I went to a pub/restaurant, I befriended a very jolly dog, Tănţica, I’ve slept better and snored less, and, in a way, I felt sort of normal, something I really, really missed. So, by no means I am back to square one!

Cati and Tantica, her new Furry Friend

Cati and Tantica, her new Furry Friend

I am looking forward to see what happens next and can hardly wait to write about the experience I am going through at the moment.

Until next time.

Be well,
Cătălina.

  3 Responses to “The Road to Perdition (to Bucharest)”

  1. WISHING YOU WELL!

  2. Thank you so much for the news about how you’re doing. I am sorry it has taken me so long to read this and respond. As you know, I’m chronically ill, but since a little over a week ago I have also had a bad cold that kept me in bed most of the week. Most people can somehow still get up and go to work with a cold, but when you’ve got a chronic illness like dysautonomia, the same cold virus can wipe you out for a couple of weeks. I’m feeling a little better, but I’m still sick with this cold (blowing nose constantly, sneezing, and especially coughing), and once the cold symptoms will have subsided, I will need another week just to recover from having been sick.

    Regarding what you said about your state of mind back in December and before, it makes me very sad to think that you believe you are in any way to blame for your stroke. I have a hard time believing that a person’s state of mind can really cause such a thing. I could, however, imagine that a person’s state of mind might be the *result* of being sick, rather than the cause.

    For many years, my state of mind was very low as a result of having dysautonomia and especially as a result of not having medical help nor any in-home care to help me with ADLs (“activities of daily living”, for example, cooking, cleaning, laundry, help getting to the grocery store or market for food, help getting to doctor appointments or the pharmacy to pick up prescriptions, etc.). But once I was able to start getting real support (in the form of better medical care and visits from care workers a few times a week to help me with ADLs), my frame of mind improved immensely. Before that, I didn’t have enough energy to exercise at all, and as it happens, I was on birth control as well. But I never had a stroke. I was never even at risk for having a thrombotic stroke, and not just because of my bleeding disorder, but also because of my genetics.

    I am not a medical professional, but in my layman’s opinion, I think your earlier diagnosis of having some kind of rare disease that put you at higher risk when on birth control is *much* more likely to be true than that this was because of anything else you did. Also, sometimes when doctors don’t know how to explain a patient’s symptoms, they make up “facts” or just fall back on 19th Century thinking: such as, that your state of mind could have contributed to your having a stroke. That sort of idea has been discredited in medical literature for many decades now.

    I do hope the alternative treatments you have sought are working. Being in pain (or other discomforts) for long periods of time can be exhausting, I know. So any relief would be wonderful. As well, I will continue to hold you in my heart, thoughts, and prayers. <3 🙂 (heart, smilie)

    • Thank you for sharing all of this with us. We feel really sorry to hear about the discomforts of your illness, but hearing about your experiences with dysautonomia we are more convinced that Cătălina doesn’t have any rare blood disease. She does have thinner blood vessels than usual, but she has never had any serious illnesses throughout her life. Even now, she says she doesn’t feel pain; what she feels is her brain being active. She can feel the dead zones in her brain coming to life bit by bit because she feels the blood flowing through the atrophied veins and then electricity and then boom she feels like something just connected . You may not believe it, the doctors certainly don’t, but that is what she feels. And all this activity is causing her discomfort, though. All she felt was great, great sadness and loneliness for a long time. (we were so blind to her suffering that I don’t know where to begin) The doctors never confirmed the fact that she had a rare blood disease (thrombophilia) and not all doctors came to this conclusion. Most of them agreed that it was a mixture of causes: her thin veins, her sedentary life, the birth control pills, her state of mind. Trust me, even healthy people can become ill simply because of their poor state of mind. When someone is constantly sad and feels mostly negative emotions, the body simply stops trying to heal and to fight.
      We will add more about this subject in a future post.
      Take care!
      Cătălina & Ana.

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