|Detailed account of the battle against the findish enemy sickness Neuromyelitis optica
Monday, March 19th, 2012
The Rentenkasse takes it's time this time. Generally a decision for (or against) a grant for rehab is made within ten days. It's three weeks now and I haven't heard anything. Friends keep asking almost everyday if I go to Beelitz again. I know they ask because they care, yet I am really fed up with telling the same story over and over again. When th status quo changes I will let everybody know momentarely.
I realize that I am not writing as extensively here as I did before. Probably the blog helped me cope with situation when it was new. Now that I am more than a year into being sick and in a wheelchair I have overcome the initial urge to externalize. At least partially. The blog still serves as the main information outlet for everbody who is interested and not in the vicinity, like my friends in distant places. Ahoi to all of You, and again: thanks for the support.
Thursday, March 1st, 2012
Yesterday they filled me up with a-thousand milliliters of Rituximab. Apparently I can take that stuff really good, not throwing up and nothing. Now it only has to work, driving away the prime disease from my spine so that I can concentrate on getting back up on my feet and legs for good.
Another appeal for a follow-up stay at the rehab in Beelitz has been filed with the administration. This will take at least ten days, and maybe this time they don't try to send me to another rehab clinic first, like they tried to do the last three times.
Tomorrow I will go home to do some more paperwork, then it will be wait and see.
Thursday, February 23rd, 2012
Back for a round of check-ups and treatments at the Neurological clinic at Charité, ward 136 as usual, this time room 1. A hightech, electronically operated bed named Enterprise awaits me.
Bloodworks and > MEP, > VEP and > SEP are the tools of choice this time, no MRT. The doctors have decided it is to early for that. Also to my surprise, Plasmapharese is not on the menue. All this is supposed to be good, so good in fact, that I shall receive another tretament with > Rituximab antibody medication, although only half the dose I received last time.
I could have been out after less than a week, wouldn't it be for that persistant infection in the urinary tract, which has returned. Or maybe it is a new one. However, antibiotics of the regular kind are administered but show not the desired effect, so on Monday some heavier stuff is given, also on Tuesday. I only can receive the Ritux antibodies when I am free of bacterial infection. Maybe tomorrow that will be the case. Dr. Hotter is convinced that the harder stuff will kill that infection.
Saturday, February 11th, 2012
Since two weeks the hands are acting up again, painwise. They hurt, badly. It's enervating.
Sunday, January 29th, 2012
A very nice day, sunny, not too cold. In the afternoon I have visitors with coffee and cake, in the evening I work on a translation that is due Monday morning. Everything seems to be fine. I go to bed late. Immediatly upon lying down a fever starts shaking me up, really hard. Teeth rattling away, body shaking violently, 39°C. The fever triggers spasms in the legs, the spasms feed the shivers. Eeverything reminds me of a similar event in March, when I had carried an infection undetected for a while.
Two weeks ago an infection of the urinary tract had been diagnosed and I had taken antibiotics. Could it be that they didn't work?
I shake for about three hours before I call a freind who in turn calls the emergency doctor who puts me into emergency ward of Charité hospital in the morning. Around ten I am in an empty and quite room in the emrgency ward. There I was quite lucky because the doctor on duty recognized me from the Plasmapharese treatments. So I got whisked away in an instance. They fill me up with some stuff and I feel better and sleep for the rest of the day. Unfrortunately my urine-bagy fils up and runs over, which I only recognize as it is way to late. I clean yself up, which is possible because I have regained some strenght. In the morning I wasn't even able to transfer from the bed into the wheelchai. Now it is a bit better. Since I travelled extremely light I hav enothing with me and have to change into clinic garb. I look like a serious emergency case. In the evening they whell me into the Urological ward. I haven't eaten in 24 hours.
The treatment is swift - antibiotics and monitoring. I am free from the infestation after three days. On Friday they release me. The process was also observed by the Neuro-doctors, who show up everyday to make sure. They look forward to see me again in Februrary 23rd for the regular check-up.
Thursday, January 17th, 2012
The measurements to be taken if in suspicion of an infection of the urinary tract are as follows: find a friend to take a urine sample to the doctor, where she or he gets a paper to further the sample to the laboratory. Wait four days. Call the doctor for the results. I did everything except calling in because I thought they would call me. So I get the results only after six days and the medication on the seventh day. Yes, the result was positive. Bummer. I take the medication. Before I can receive the result the things in the bext enty happen.
Sunday, January 1st, 2012
New Years Eve at home. Great!
The examination intervall has been reduced to two month, next stay at Charité is scheduled for February 23rd. Until then I am on my own at home. Physio therapy I have at a praxis in Kreuzberg where I take the bus twice a week. The therapists there are nice and probably competent, yet they cannot do much more than keep me a bit in shape. They cannot really work on getting me back on my feet. For this 40 minutes twice a week is not enough. I will apply for another stay in Beelitz.
Thursday, December 22th, 2011
The treatment was compared to the former ones relatively exhausting. Instead of five sessions Plasmapharese in ten days I get the same amount in six days, followed by two days of Cortisone-shock-treatment. When I get picked up by friends I cannot even stand up from the wheelchair to transfer into the car.
Thursday, December 15th, 2011
On Monday Doctor Hotter (yes, that's his name) breaks it to me: the inflammation in the spine has not decreased as I had expected and hoped for. Instead it has spread. Bummer. So off it is for a new round of > Plasmapharese and Cortisone.
Tuesday I wait in vain for the > Shaldon catheter to be applied, as I do for most of Wednesday. In the late afternoon they finally wheel me into the surgery ward. I am supposed to get the device and almost immediatly afterwards receive the first Plasmapharese treatment. It doesn't happen. There are emergencies and those always come first.
Tne doctors want to try something new. Normally one gets the bloodwash, rests one day and gets the next bloodwash. This time they want to apply two sessions on consecutive days, without the day off "since I responded so well to the procedure before". I comply, because I responded so well to the procedure before but mainly because I want to receive the whole treatment before they release me for the holidays. Time flies. Everybody who is in a condition to leave the hospital is released for the holidays. There are no treatments during this time. And I don't want to come back so soon. Instead I want the full program now.
Saturday, December 10th, 2011
To the day one year ago I was admitted to Charité hospital in Berlin-Mitte. I knew than that something serious was going down, and I expected to spend some time in the hospital, may be a few weeks. It never occured to me that the stay would be so elongated. Of the past 365 days I spend only 48 days at home. For the rest I was at either Charité or Beelitz-Heilstätten.
Thursday, December 8th, 2011
Two days at home, then off to Bettenturm. While in the car on the way to the hospital, the phone rings. It's the dispatcher who wants to know where I am at, because "in half an hour" I am scheduled for > MRT examination already. I make it in time. More examinations on Friday. The rest of the weekend is nice and calm ... and wasted in terms of efficiency.
After one night in a quite two-bed-room I was moved to the regular four-bed-room. The neighbors are horrible this time: constantly blabbering and cracking jokes on the lowest possible level. It is excruciating. I wear headphones most of the day. The worst joker is released after a couple of days. The new guy is heavily handicapped, can barely speak or move, yet starts jerking off with his palsied hand immediatly after the nurses who wheeled him in left the room.
Tuesday, December 6th, 2011
After two month to the day I am returning to Berlin. The doctors wanted to keep me for another turn, but the date for re-evaluation Charité has been set month' ago, at a visit to the neurological ambulance at Charité, an experience new to me. I was merely like a regular visit at the doctor, at one of the old buildings at the original campus.
Sunday, October 16th, 2011
This day marks a breakthrough in the artistic niché segment of Patientenkunst art made by patients. Also known as art brut it consists mostly of the work of mental patients or the psychologically challenged. Here the field is widened to enclose the work > Patient Schmidt 2011, which was installed with the help of ergotherapist Frau Katrin Fitz at Beelitz-Heilstätten.
As for the therapy in general: After being at Charité and a stay at the mighty Tower Nr. 9 (which in fact was longer than planned because the Rentenkasse wanted to send me instead to Beelitz-Heilstätten to another, less suited facility again, I had to object to this in proper form, which had to be processed which took ten days) my walking abilities had declined somewhat dramatically. The good results from summer, walking several lenght' at the Barren, were void. I could not walk. I still could stand up though. And to my amazement the physiotherapists stated, that the muscles would report to nerv signals much better then in summer.
Focus was now on the power of the torso instead of the legs. Training was strict and exhausting as always, and torso power grew better by the day, I might say.
There was change in the liquid waste management. Instead of using an urinal condome to piss into a plastic sack or try to reach a toilet whenever I felt the urge to piss, I was told to catheterize at least six times a day, which is about every two hours. I didn't like it so much but realized soon, that my bladder reacted well to it. I stayed dry for the most of two month, except for two leakage incidents, when I didn't concentrate or missed the timeslot because I was pre-occupied.
The problem with heavy pain in both hands sustained, even though it wasn't that bad every day. Some days there was no pain at all, on others I was about to cry that is, the tears came to my eyes all by themselves, when I had to grab something really firm or when I bumped my hand against something. Physiotherapist Barbara told me to begin a journal, in which I was to detail the forms of pain and the frequence of occurance thereof and other related specifica. I started the journal. A psychological effect set in. Writing it down the pain was externalized to an extend. After a month or so I had longer pain free periods. How the causality is constituted here? I have no idea.
Allover the stay was not as joyful as the one in summer, mostly because it wasn't summer anymore. The room situation was OK. I did not get a single-bed room, but was lucky with my room neighbors.
After a month the doctors applied for another month, which was granted without problems by the Rentenkasse.
Wednesday, October 11th, 2011
Return to Beelitz-Heilstätten.
Some days at home at the mighty Tower Nr. 9 have been quite exciting. I changed the Get-back-to-full-health-slogan from "Tod dem Krankheitsschwein" ("Death to the Disease Pig" to "Ich werde gesund" ("I become healthy"). It is more positive, which supposedly is good, as friends and healers, witches and warlocks assure me.
At the tower friends had a plumber change the toilet. It is now larger (higher) and has a wooden seat which not easily breaks.
Tuesday, September 6th, 2011
Here I am again, back on battlestation: Neurological clinic of Charité Berlin-Mitte, ward 136. The Staff is good-humored and greets me as an old aquaintance. This time it is room 11.
Two rounds of > MRT later the professor tells me: "There is still some activity" and orders another five cycles of > Plasmapharese. But first comes the applikation of the now familiar > Shaldon catheter. This time it is quite painless and unproblematic.
Plasmapharese is showing good results. I feel light and strong, standing up is easy, at least during the day. I get two extra cycles, exacting seven during this stint, 21 in total. To round it all up, they throw in a three-day/one-gram-per-day-Cortisone-shock-treatment after completing the plasmapharese-cycles. If somebody offers You a tasty Cortisone-shock-treatment for free, don't say no. It's free Cortisone after all.
Instead of three days this stay has become one of three weeks. During this time I didn't get any proper physical exercise or therapy, except the one while staying at home for ten days the first one at the new studio after beng released from Beelitz. That means my physical abilities aquired in Beelitz, mainly the walking, deteriorate rapidly. Physical exercise in Charité is almost non-existing. Interns exercise for 15 minutes with each patient. Mine is an especially nice, goodlooking girl, which I worked with during my last stay in Charité. When I am exhausted from plasmapharese and she comes to the room (instead of me going to the therapy-room. The therapy-room is officially closed because it has no sink/faucet and is thus deemed unhygienic. We use it anyway), she gives me arm- and leg-massages whilst I am lying in bed, which gravely envies the other patients. I understand that.
I realize that I am entitled to another Anschlussheilbehandlung. The term describes something that might not even exist as a legal term in English. It means rehabilitation treatment (Heilbehandlung) immediatly following (Anschluss-) a stay in a hospital as an inpatient. This is mentionable because after my last stay in Beelitz the Kostenträger (administration that pays) has ruled out another stay. However, since I aquired again the status as inpatient freshly released from hospital, I am back in the game. Oddly enough they again try to send me to Grünheide, which is specialized in stroke patients (and cheaper), whereas I want to go to Beelitz, because they are specialized on paraplegics. I object and it takes them two weeks to correct the decision.
Before I relocate to Beelitz I am at home for two weeks, the time I use to apply for all kinds of stuff useful to somebody in a wheelchair, like the pass for handicapped (which entitles You to free rides around town in a special bus service, a key to special public toilets for the handicapped, some benefits if You want to visit a museum, etc.), a bigger toilet in the bathroom and changes in the kitchen which will allow me to access the kitchen-sink and do the dishes. It is nice that my visitors do the dishes for me, but after a while I have the urge to do them myself, out of reasons of independence. Or at least I want to know that I can do them myself.
One day I fell from the wheelchair because I leaned myself to wide out front, after I had modified the height of the seat with an extra cushion. This is a crucial situation. I am alone and I want to get back in the chair, which I cannot accomplish directly. After careful consideration and a phase of really deep concentration and breathing I get up on all four and crawl into the living-room, whilst pushing the wheelchair in front of me. There I get up onto the sofa by means of some kind of low crawl. Once lying on the sofa I can sit up and transfer back into the chair. Twenty minutes of sheer exhaustion. But I feel very good after this accomplishment. In the sometime future I need to be able to get into the chair from the ground, which by now I cannot do. It is too dangerous for the right shoulder (possible dislocation) pressing up with the hands behind the back. Also I am a bit heavy, I recon.
Wednesday, August 17th, 2011
At home for the first time after eight month in hospital(s). My fear not to fit throug the doors with the wheelchair has proven to be unreasoned. All the doors are wider then I thought they would be. Bathroom is useable, only the toilet itself is to small. It is so low that I have extreme problem to get up from it. Otherwise everything is fine, given the circumstances.
The bed is problematic in the beginning because I am used to the hospitalbeds which have motor and can be erected to an uprigt sitting position by pressing a button. My bed has neither function no motor and no upright sitting position. I adjust.
Neighbours react shocked seeing me in the wheelchair. The ones on the floor offer help. I directly take them by their words and asked for waste-removal. I cannot ride into the room with the garbage-chute, so I put the waste-bags in front of the door to the apartement, where they are picked up by whoever comes by first.
I check into the physical-therapy-studio my Beelitz therapist Barbara has recommended. I am trying to get at least two sessions per week, biz it tales some time to adjust their schedule to a new client.
The girls come by and bring food, sometimes they cook. As much as I like it, I have to get away from the subsedized economy and get back to shopping for myself. I start this immediatly. It is good to be home. Yet, on August 17th, I move back into Charité for re-evaluation of the inflammation of the spine. It should be about three days.
Saturday, August 6th, 2011
Working hard. Exercising every day for five hours: different sports for agility, endurance and power, one-on-one exercises with physical therapist, electricity. This goes on week after week, Monday through Friday, two hours on Saturday, Sunday is free. I am getting better in standing up. I use a contraption called orthosis, which helps to bring up my left foot in order to initialize a step. Shaky walking is getting better. After a couple of weeks I can walk several length along the parallel bars. The performance is increasing constantly.
> Tony Millionaire has commented on the progress with yet a > third strip, which shows "Dr. Heinrich Dubel" standing upright in triumph. Friends tell me they dream of me walking about, even dancing.
I get my own wheelchair. It is black.
What will become of the bladder-problem I have no idea. At least I am not pissing my pants anymore, not every half hour that is. I learned to control it.
I am not falling to the ground. During the whole time I only once had to sit on the floor instead of the bed, which I aimed for, because I miscalculated and the power wasn't enough to move me either onto the bed or back into the wheelchair.
In ergo-therapy different approaches against the ever increasing pain in both hands now: Hot pebblestone- or lentil-baths. Special massages that are extremely painful, too. Pain in the hands is sometimes unbearable, sometimes completely gone. They don't know what it is and suspect that the prime sickness now grabs for the hands, too.
Sometimes in sport-therapy I have a blackout, mostly after standing up from the chair. Starts as a spastic in the torso, lightheadedness, then blackout. So far I always managed to sit back into the wheelchair safely. The first time they checked with EEG, suspecting a stroke, luckily to no avail.
Performance at the parallel bars is getting better and better. Confident that if I only proceed continously I will walk eventually. The doctor then tells me that the Kostenträger, that's the organisation which pays for he whole shebang, will no longer do just that. I will have to return home, which I do on Saturday, August 6th, 2011.
I still didn't come up with a more positive mantra or slogan. During the approximately four month in Beelitz I received about a-hundred postcards from sometimes remote places, mostly playing on the "Death to the Diseasepig" slogan. The staff is always excited. It seems I am the only one in ward R8 who gets mail at all. Watch some of these postcards > here.
Wednesday, April 20th, 2011
Workout schedule is strict, yet a little bit less tight then last time around. They leave me almost half an hour between every two appointments. It is clear that the results of the workout and other rehab-procederes turn out much better when I pause more between exercises. I like that, both the pauses and the results.
Getting electric treatment every day now (> Physikalische Therapie). On the other hand I haven't qualified to participate in the swimming exercises (also Physikalische Therapie). I am not dry enough. Working on this.
Wednesday, April 13th, 2011
Moving out again to Beelitz. I know the drill by now. Most transporters are easygoing fellas (some are actually easygoing gals).
Always nice being out, moving through the city. If only the windows of the ambulance wouldn't be tainted, I could see something.
When they wheel me into ward R8 on the second floor of Recura rehab facility in Beelitz-Heilstätten all the doctors and most of the nurses are standing around at the entrance of the ward,. They probably have just finished visitation. However, it leaves the impression that they form an honor guard or a welcome comitee. The welcome is more than warm, almost frantic. Very very good to know to have left an excellent impression on the staff. Soon I will have more cake delicacy delivered for them. If I only can be a patient, I will be the best patient ever.
Settling in goes much faster then last time, I know the ways around. I am into the program by the next day. Barbara will bring me up in no time.
Saturday, April 2nd, 2011
Can stand up, but not maintain a standing position for more then 20 seconds without support. Cannot walk. The left leg is lame (0 of 5), the right leg is limited functional (2 of 5). Waste management is under control, even though to execute that control costs a lot of energy, attention and time.
The administration wants to send me to a rehab-facility in Grünheide, east of Berlin. The professor is not amused, also everybody else I talk to tells me that Grünheide is good in the treatment of strokes, but not specialised in the recovery of paraplegics. I object to the decision, so does the professor. Six days later the letter is in: Beelitz it is ...
Wednesday, March 23rd, 2011
I am basically back at square one. Cortisone is administered in doses of 60 mg per day again, where it was 15 mg before the return of the inflammation. Still Cortisone treatment is being replaced as the main approach to a cure by monoclonal antibody > Rituximab therapy, a method/medication relatively new to the field of auto-immunological diseases, which nevertheless was used at the Charité with some success, as the doctors tell me. The Rituximab therapy consists of two infusions, lasting eight to nine hours each, the second administered two weeks after the first. First effect may be expected not before three to six weeks, maximum efficiency not before three to six month after the first giving, which I received today.
Friday, March 4th, 2011
During the first day back in Berlin-Charité they put me through a series of examinations (the most stressful of course Lumbar puncture/Lumbalpunktion, or Spinal tab, and MRT), examinations which I had had before, but which then, when I came in first in December, were spread out over the course of a week. Now they rushed me through them in a day.
In the middle of that night I woke up, teeth chattering, body violently shaking, fever 39°C. Spasms of the lower body chimed in, so that around 0200h the bed was rattling away and everybody else in that four-bed-room was up, looking at me (I presume) in a mixture of disgust and pity. An emergency doctor came an put me onto antibiotic infusion, after injecting me with something against the immidiate fever rush. In the morning I felt as if nothing had happened, although a mild fever lasted for a couple of days.
The antibiotic infusion was administered for a week, after which the doctors declared my blood free of any signs of an infection, without having determined the nature of the previous one.
News on the Neuromyelitis front were not so good. The > MRT pictures showed the inflammation in my brainstem had taken advantage of my overall weakness and returned. It had expanded to a degree less than in December but was larger as in January when I was admitted into rehab. Krankheitsschwein (Diseasepig) was at it again.
Again, I had inserted a > Shaldon catheter into my > Vena jugularis interna and was subsequently connected to the vampire machine for ten more occasions of > Plasmapharese. The least swiftly running session in this series lasted for five hours, due to various bloodleaks and maintenance necessities resulting therewith.
Friends suggested I should adopt a more positive slogan to fight the good fight. In general terms I agree, yet seem to be unable to come up right away with one.
Thursday, March 3rd, 2011
A week before scheduled I have to return to Berlin-Charité. What had happened?
Five and a half week of rehab did at first produce pretty convincing results. A tight regime of sport, therapeutical and medical rehabilitation measurements did not only bring back some of my ability to perform at all (legs), but also some fitness, agility and stability. Thus encouraged I put even more care into my diet, effectivly loosing weight (in the good, slow way) and stabilizing the blood-sugar parameter at good numbers.
The staff at Beelitz are very friendly, competent, with some of the nurses, therapists and even doctors I developed relations quite conversant. For example with nurse Jenny, who wears a little diamond in her tooth (unfortunately not to be seen in the picture to the left). For two weeks I even had a single room, which was luxurious after the confined room and the permanent stress at Berlin-Charité's Neurological ward.
But it wasn't all fun and games. Almost immediatly I aquired an infection of the Urinal tract, which was treated with antibiotics. When this was flushed out, a full out Uro-dynamic exam revealed that the diseasepig had damaged my Urinal tract in a serious, yet not complete way. Waste-management became a bitch, yet Beelitz provided spacious restrooms everywhere, which could be accessed with a wheelchair, of which I commanded a rather posh metallic-red one of excellent quality, compared to the wreck I was rolling about with in Charité. The condition was treated with Alphablockers, and the doctor told me that there is a good 30% chance this condition would be getting back to normal order.
After three weeks I caught a feverish cold, which in my state with no immune-system to be mentioned put me out of comission for ten days, during which I wasn't able to do any exercise or serious therapy. Next, I dislocated my right shoulder in a stupid move, when I longed for something just out of reach and not taking into account how weak I was and how run down my body, it's muscles, joints, sinews and everything actually where. I spent a day in Unfallklinik (emergency hospital) Potsdam, mostly out of it on opiates. For another two weeks I couldn't do any serious exercise, instead i was working now on recovering shoulder movement.
Next, the hemogram (Blutbild) indicated a massive infection, which the doctors in reha Beelitz where not able to locate exactly. After all they are not a regular hospital for acute cases. That's when they decided to return me to Berlin-Charité a week before the regularly scheduled follow-up examination.
Tuesday, January 25th, 2011
Tony Millionaire follows up with a second strip in the international comicstrip campaign "Healing by Helicopter", picking up on the > slogan "Tod dem Krankheitsschwein" ("Death to the Diseasepig").
Tony Millionaire is an eminent artist and a reknown healer. Everything he does is important. "Send no money, send no belief, send no faith, just pull this nasty shit off Rosa." These were his words, and they are true: "It doesn't matter if You believe in it or not. Because it is not a faith healing. It is an actual healing."
The campaign started in December 2010, when my friend Tony Millionaire launched the "Healing by Helicopter" comicstrip campaign through his website > maakies.com, where You can find the > first and the > second "Healing by Helicopter" comicstrip and leave comments. You can re-post it, which no doubt will support what Tony has done with his giant mindforce: Help pulling the fiend out of my body. With this eminent help I will do one thing: I will kill the fucker!
During the following weeks postcards from India, Australia, the US, Canada, Austria, Switzerland, France, Holland, Finland and of course Germany were delivered to Beelitz-Heilstätten, all bearing the slogan "Tod dem Krankheitschwein". I didn't count them, but I weighed them almost a kilogram ... Some of the postcards, the ones which were manufactured by the senders, can be examined on the > Facebook page "Running Neuromyelitis optica away from my spine and out of my body".
Friday, January 21th, 2011
Today I am in the hospital for six weeks straight.
Progress is happening, although very, very slow. I stand up sometimes without having to use the arms to push for support, simply by power of the legs. I walk in a zombie pace, concentrating on the left leg not to be dragged along but instead manipulate it into setting real steps, which some days works better then others.
My attitude is generally high spirited, yet it had to take a blow from an unexpected direction. The two social insurances which are accountable for covering the hospital, therapy and rehabilitation, are at odds abouts which class of rehabilitation I should be admitted to, and which of them is going to pay for it.
I should have been transferred to rehab already. Instead I will stay for another weekend here at Charité Mitte. It is an incredible exception that a patient is present for such a long time. Everybody is walking around shaking their heads upon this blatant administrative incompetence. Monday I will definitivly move to > Beelitz-Heilstätten.
Friday, January 14th, 2011
First signs of this fucker already showed as early as June 2010, when sometimes, more so under the influence, but also on a normal day, the left leg would just twitch and loose power for a moment or two, which was annoying, but didn't alert me too much. Over the second half of 2010 it became apparent that something was wrong, yet I wanted to "outsit" it, effectively ignoring it, because I thought it was just another incident with the Lumbar vertebrae (LWS-Syndrom), which I had had before, and in my size and age, it wouldn't be that extraordinary. So, when I finally went to the doctor, my Hausarzt send me to the orthopedician, because he also believed it to be a disc problem, or some twisted nerv, or a combination thereof, or general LWS. The orthopedician ruled that out and send me further to the neurologist. Lots of electrical and electro-magnetical diagnostic activity followed, spanning because of full schedules at the facilities over a period of three weeks in October 2010.
Another run, in early December, through the 1,5 Tesla tube > MRT, a high tech diagnosis tool, revealed, after they finally scanned the spine at the base of the brain (brainstem, > Hirnstamm), an inflammation thereof, upon which I was rushed to the hospital immediatly. I was admitted to > Charité Berlin Bettenturm on December 10th.
By then, my condition had deteriorated so much so, that in the evenings I could barely move my left leg, the right leg was down too, about 40%, and I felt a general decline in moveability. At the Charité, massive tests were conducted, again lots of MRT diagnosis, this time also in sessions of up to 80 minutes, also CT, Neurodoppler, EMP, SEP, some of it painful, some humiliating, often both.
Diagnosis was inconclusive at first, because as it turned out the disease is rather rare, plus in my case one (normally) signifying sympton the inflammation of the optic nerve (optic neuritis) was missing. With me, only the spinal cord (myelitis) was befallen, a fact about which I was and am very, very … err … happy. The disease turned out to be > Neuromyelitis optica, an auto-immune disease. The body fights a sickness which is not there. To be sure, the doctors have to try to find out first if there may in fact be a(nother, "real") sickness towards which the immune attack is directed, like cancer, HIV, Syphilis, Menengitis, the works. Only if no such diesease can be diagnosed, one can be sure what happens is a genuine auto-immune attack the body directs at itself. Extensive tests now showed I had none of these other conditions, so the only thing left was the fiend proper, the auto-immune fuck-up, Neuromyelitis optica, which I dubbed "Krankheitsschwein" "Diseasepig".
Standard treatment are high doses of Cortisone to stop and drive out the inflammation, followed by a series of blood-washing sessions called > Plasmapharese to get rid of the toxic proteins produced by the inflammation, which swim around in the bloodstream and actually attack the neurons, causing disruptions in signal transmission and as a consequence thereof loss of motoric function and muscle power.
The day Cortisone therapy started, but unrelated to it (it could have happened way earlier already, or never, but in this case it happened now), my condition dropped dramatically, on the night of December 20th. After spastic seizures in the legs and pelvis, which felt surprisingly pleasant, I was paralysed from the waist down and also lost about 50% of upper torso capabiliy (active muscle control, not vegetative, so I was breathing and digesting happily along, while being unable to move my legs or sit up, and being very weak in the arms). I was rather frustrated about that development, especially about the waste management procedere, which now had to be handled by contraption and medical staff.
On December 23rd the ward I was in was shut down over the holidays for maintenance, 80% of the patients were send home, the rest of the patients those who where to sick and had to be tended to were concentrated in another ward. After two weeks in the hospital already, and being worse off than when I had entered the hospital, in delicate issues dependend on help, I had to adjust to new personal and personalities, as well as to different procedures (exploratory challenges lie there abundant: why do three nurses the same procedure in four different ways?). Still, I was one the fittest patients there.
Around that time Tony Millionaire's "Healing by Helicopter" international comicstrip campaign was launched through his > maakies.com website, and I used the momentum Master Tony generated to hardcore manipulate myself into betterment. After only three days of collecting healing energy from around the globe, conversing with ODin, autogenic training and having kosmorgasmic sessions through Skype or remote sensing connections, plus Kill Bill style toe exercises and other useful stuff, I rose out of bed in the middle of the night and walked along the wall into the restroom, aware of that being a somewhat risky manoeuvre, yet did it anyway. Gained more confidence. Later aquired a wheelchair so that I would be able to move around at a faster and safer pace. Getting up was difficult, but possible, I could sit up again, yet was still pissing through a tube, which remained problematic. On the other hand I could handle solid waste management myself again.
New Years Eve I spent having a most striking panorama view of Berlin Alexanderplatz. Listened to Robyn's Time Machine for about 25 times or so, staring at the TV-Tower and the fireworks put me into a trance around 0045h. That night I had spasms in the legs, which again felt surprisingly good. Since then the functioning of the legs keeps slowly coming back, even though I am still not in the condition I was when I came to the hospital on December 10th. As of today January 14th the left leg is at 5%, the right one at 40%.
Cortisone therapy is continuing. In the beginning they zapped me with eight grams in five days, then 100 milligrams for ten days, down to eighty milligrams, now sixty.
On January 6th the second leg of therapy Plasmapharese started: For this they turned me into a (temporary) cyborg. I now wear a > Shaldon catheter and get my blood plasma flushed every second day. Sunday January 16th the "Seven of Seven"'s plasma flushing will have been conducted, after initially only five of these treatments were scheduled.
The Cortisone givings will be reduced to nix by next week, instead I will get a new drug (forgot the name), which I will take for quite some time, up to half a year or even longer. It shall prevent the return of the inflammation, and has less side effects then Cortisone.
Also … my second (new) condition is diabetes. It was diagnosed collaterally when I went to see the doctor about the problems with the legs. Even though I only learned about the diabetes two month ago, I was able to adjust myself quite well, change my eating habits, loose some weight in the right way (steady and slowly). My good blood sugar readings only where ruined by the Cortisone. So now I get extra Insulin, which under "normal" conditions I wouldn't need.
My spirits are (still) high after five weeks in the hospital. The medical staff here is great, I like them, and I think they like me.
Tuesday January 11th was my 50th birthday. Little did I know what actually would come about when for more then a year in advance of this birthday I was bragging about announcing a really REALLY special celebration. Clearly I had something different in mind. As the saying goes: Beware what You wish for ... Still, the party in the Western wing of the great entrance hall of Berlin's Charité Bettenturm was a > smasher.
Thursday January 20th I will be admitted into rehab, to > Beelitz "Sieg" Heilstätten, for three weeks minimum. There I will be trained to walk properly again, rebuild muscles and confidence.
They don't say if this then will be over, because they don't know. To which degree I will be regenerated and the new Normal will be the old Normal depends on the extent of any lasting damage the proteins may have done to the neurons, which is something that apparently cannot be measured or photographed, but has to be determined through practical testing, i.e. walking, moving about, finding the limits thereof.
Also it is unclear if this will go away forever or some day come back to haunt me again. On a personal level of cosmic confidence I say: "Death to the Diseasepig! Forever! For good!" "Tod dem Krankheitsschwein! Für immer! Auf immer!"
Please don't seize to give Your support just now. This is not over yet.
If You like, visit me on > Facebook.
Thank You all!
From battle station Bettenturm, Yours truly
Heinrich Dubel (temporarely cyborg "Seven of Seven" or "Patient Schmidt")
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