Grocery shopping causes high stress levels to me, so much so, that I avoid it whenever I can.
So most of the times, if I don't feel well at all, I send husband to do the groceries alone.
To not be a total social recluse, and starting to lose my abilities to cope, I go and try if I can still endure this procedure without being a crying basketcase once in a while.
Today, I felt like taking it on, so we shared the shopping list and I wanted to get done with my part fast.
As a highly visual person, I ran into a common problem again.
I just (after about 4 years) got used to the "new" design of the rice package which is to be seen on the right in the picture, so I could go to the shelf, grab and run to the cash register.
Then, again, they change the design so totally, that I do not recognize it as the rice we needed and always bought there.
Is this known to anybody else, or is this the total autistic ubersensitive OCD thing to want everything stay the same?
I mean, come on! Why do products *have to* get a new jacket almost as often as the fashions change? Is it not enough that they blast out commercials to customers about useless products in every corner of the aisle, torture them with cryingly loud advert signs everywhere, and scent the stores with *purchase encouraging* scents?
This all just causes information overload and shutdown in me. It makes me literally wanting to throw up and fall down dizzy.
This is an environment, I can not happily live in.
It can just barely be called survival, if you ask me.
The longing for a little, self sufficient farm, where I can have a room at, do some work with the crop and live a happy, back to basics life gets stronger and stronger.
My only question would be, is there electricity and a way to connect to the internet? because the contacts there do feel more like home than the real life contacts with so many society zombies.
I also would need a way to pursue my crafts (knitting, painting, spinning, maybe weaving and such fibery ways to keep me sane and warm).
There is no real need to use the most recent fashionable clothing, nor is there any need for cosmetics except lotion and shampoo or soap.
Where are those, who think similarly?
Do you want to feed commerce or yourself?
I wish for you to contact me and find a way, how we can establish such an enclave of sanity in the mad world around us.
If you feel as repelled from what is going on out there as I do, maybe, if we gang up, we can make a difference.
Saturday, October 31, 2009
Wednesday, September 30, 2009
One step closer to the cranioplasty/ Einen Schritt weiter in Richtung Schaedelplastik
On Oct. 8. I will have the CT to measure my head in mm steps. The data will be sent to the manufacturer who will be modelling the titanium implant.
One step closer to the 'fixing' of my problem, I hope.
I had the last appointment with my old Neuro today, and we parted in peace, even though I was really angry with him a few weeks ago.
He is just human after all and sometimes makes not so fun decisions, so I sure hope, his other patients will be happy with him till 2011 when he retires.
So far, the Craniosacrale therapy is coming along nicely for my old cervical spine problems that I have for over 15 years now, and I believe, it moves something with my tinnitus, also.
We stick with it, and see how my body adjusts. It is a long time project, and now that the neurosurgeons have told me that my headaches are likely coming from the missing bone, I just will have to tread water till after the surgery and hope they will be gone after recovering from the work there.
On a side note, I was in town for the neuro appointment and used the ticket to go shopping some, I found the coolest thing since sliced bread :-)
A ballpen which is rather short and kind of shaped like a Y
you put your index finger into the arms of the Y and place thumb and middle finger on the shaft. The writing tip is at the bottom of the Y.
The whole pen shaft is triangular and this is the most ergonomic pen for people with hypermobile joints I have ever seen.
And, they sold those pens for 50 Euro cents, so it is affordable even for me :-)
All in all a very tiring and strenuous day in the big city, but very successful all in all.
--------------------------------
Am 8. Oktober werde ich das Planungs CT haben, bei dem mein Kopf in mm Schritten vermessen wird. Die Daten davon werden dann zu dem
Hersteller geschickt, der das Titanimplantat modellieren wird.
Ich hoffe, das wird ein Schritt naeher zur Loesung meines Problems sein.
Heute hatte ich auch den letzten Termin bei meinem alten Neurologen und wir sind in Frieden voneinander gegangen, obwohl ich vor ein paar Wochen noch sehr sauer auf ihn war.
Immerhin ist er ja auch nur ein Mensch, und trifft manchmal unschoene Entscheidungen, also hoffe ich wirklich, dass seine anderen Patienten weiter mit ihm zufrieden sein werden, bis er 2011 in Ruhestand geht.
Bis jetzt geht es mir mit der Craniosakraltherapie ganz gut was meine alte HWS Verletzung von 1994 angeht und ich glaube auch, dass es bei meinem Tinnitus was bewegt.
Wir bleiben dran und sehen, wie mein Koerper drauf reagiert.
Es ist ein Langzeitprojekt, und weil die Neurochirurgen mir ja jetzt glaubhaft machen konnten, dass die Kopfschmerzen vom fehlenden Schaedelknochen kommen, werde ich dafuer einfach ausharren muessen und auf die Zeit nach der Operation warten, bis sich alles davon erholt hat.
Noch was anderes, Ich war heute ja in der Stadt fuer meinen Termin, und habe das gleich zum Einkaufen genutzt.
Dabei habe ich was gefunden, das ziemlich genial ist.
Einen Kuli, der wie ein Y geformt ist. Der Zeigefinger kommt in die Schenkel des Y, und Daumen und Mittelfinger greifen dann den Schaft, der dreieckig ist.
Das ist der ergonomischste Stift, den ich jemals in der Hand hatte, vor Allem fuer meine Ueberbeweglichen, leicht verkrampfenden Finger.
Das tollste daran ist, dass sogar ich mir solche Stifte gut leisten kann fuer 50 Cent.
Im Grossen und Ganzen war heute ein anstrengender Tag in der grossen Stadt, aber auch ein sehr erfolgreicher.
One step closer to the 'fixing' of my problem, I hope.
I had the last appointment with my old Neuro today, and we parted in peace, even though I was really angry with him a few weeks ago.
He is just human after all and sometimes makes not so fun decisions, so I sure hope, his other patients will be happy with him till 2011 when he retires.
So far, the Craniosacrale therapy is coming along nicely for my old cervical spine problems that I have for over 15 years now, and I believe, it moves something with my tinnitus, also.
We stick with it, and see how my body adjusts. It is a long time project, and now that the neurosurgeons have told me that my headaches are likely coming from the missing bone, I just will have to tread water till after the surgery and hope they will be gone after recovering from the work there.
On a side note, I was in town for the neuro appointment and used the ticket to go shopping some, I found the coolest thing since sliced bread :-)
A ballpen which is rather short and kind of shaped like a Y
you put your index finger into the arms of the Y and place thumb and middle finger on the shaft. The writing tip is at the bottom of the Y.
The whole pen shaft is triangular and this is the most ergonomic pen for people with hypermobile joints I have ever seen.
And, they sold those pens for 50 Euro cents, so it is affordable even for me :-)
All in all a very tiring and strenuous day in the big city, but very successful all in all.
--------------------------------
Am 8. Oktober werde ich das Planungs CT haben, bei dem mein Kopf in mm Schritten vermessen wird. Die Daten davon werden dann zu dem
Hersteller geschickt, der das Titanimplantat modellieren wird.
Ich hoffe, das wird ein Schritt naeher zur Loesung meines Problems sein.
Heute hatte ich auch den letzten Termin bei meinem alten Neurologen und wir sind in Frieden voneinander gegangen, obwohl ich vor ein paar Wochen noch sehr sauer auf ihn war.
Immerhin ist er ja auch nur ein Mensch, und trifft manchmal unschoene Entscheidungen, also hoffe ich wirklich, dass seine anderen Patienten weiter mit ihm zufrieden sein werden, bis er 2011 in Ruhestand geht.
Bis jetzt geht es mir mit der Craniosakraltherapie ganz gut was meine alte HWS Verletzung von 1994 angeht und ich glaube auch, dass es bei meinem Tinnitus was bewegt.
Wir bleiben dran und sehen, wie mein Koerper drauf reagiert.
Es ist ein Langzeitprojekt, und weil die Neurochirurgen mir ja jetzt glaubhaft machen konnten, dass die Kopfschmerzen vom fehlenden Schaedelknochen kommen, werde ich dafuer einfach ausharren muessen und auf die Zeit nach der Operation warten, bis sich alles davon erholt hat.
Noch was anderes, Ich war heute ja in der Stadt fuer meinen Termin, und habe das gleich zum Einkaufen genutzt.
Dabei habe ich was gefunden, das ziemlich genial ist.
Einen Kuli, der wie ein Y geformt ist. Der Zeigefinger kommt in die Schenkel des Y, und Daumen und Mittelfinger greifen dann den Schaft, der dreieckig ist.
Das ist der ergonomischste Stift, den ich jemals in der Hand hatte, vor Allem fuer meine Ueberbeweglichen, leicht verkrampfenden Finger.
Das tollste daran ist, dass sogar ich mir solche Stifte gut leisten kann fuer 50 Cent.
Im Grossen und Ganzen war heute ein anstrengender Tag in der grossen Stadt, aber auch ein sehr erfolgreicher.
Wednesday, September 09, 2009
non scientific methods / Nichtwissenschaftliche Methoden
Two days ago I had the appointment with the pain specialist.
We had a thorough talk about the symptoms which led me to him, and we worked out a medication plan to get me completely pain free.
He thinks, getting the pain down to a bearable level is not enough.
But before we tweak the meds, he offered to me to try an applied kinesiology testing and treatment.
He did a few things with me and had me walk around for a bit afterwards.
I dont really know what he did there, and how his results were, but he told me he detected some traumatic reaction he thinks are results from the hemorraghe and surgeries.
I think, he spent almost an hour on this, and he asked me to keep low for the rest of the day. This is exactly what I did. When I got home, I felt so tired, I had to take a nap of 2 hours.
Then I tried to just *be* and not pressure myself to any 'I have to do' activities.
I had a rather enjoyable night, and everything was rounded up with a craniosacral treatment on Tuesday with my physiotherapist.
Another nap, and it seems the headaches get less severe.
I can not tell for sure because I was advised to keep taking the pain meds. But I did not feel the weaning out of the dosage of the pain meds as before, so I guess it gets better.
Now I have to wait and see if this is a placebo effect because I finally feel validated for my own deductions or if those two 'pseudo scientific methods really do make the difference.
I will phone with the pain specialist on Friday, an have another appointment with him on Sept. 16.
PT will go on, too and as soon as we have cleared the question which material I want to be used for the cranioplasty and we set a surgery date, I sure hope I dont have to take pain meds on a regular basis any more.
I have enough meds because of blood pressure, thyroid and seizure treatment already, so I am very thankful for each pill I can leave out of my 'diet'.
Vor zwei Tagen hatte ich den Termin mit dem Schmerzspezialisten.
Wir hatten ein ausfuehrliches Gespraech ueber die Symptome, die mich zu ihm gefuehrt haben, und wir haben einen Einnahmeplan fuer verschiedene Medikamente ausgearbeitet, um mich voellig Schmerzfrei zu bekommen.
Er denkt, die Schmerzen auf ein ertraegliches Mass runterzubringen ist nicht genug.
Aber bevor wir daran etwas aendern, hat er mir angeboten, eine Applied Kinesiology Testung und Behandlung zu machen.
Er hat ein paar Dinge mit mir gemacht, und hat mich dazwischen immer wieder auf und abgehen lassen.
Ich weiss nicht wirklich was er da konkret gemacht hat, und wie die Ergebnisse waren.
Er hat mir gesagt, dass er eine traumatische Reaktion getestet hat, die wahrscheinlich von der Blutung und den noetigen Operationen
herrruehrt.
Ich glaube, er hat fast eine Stunde mit mir damit verbracht und hat mich angewiesen, danach langsam zu machen fuer den Rest des Tages.
Oh ja, das war genau, was ich gemacht habe, als ich heimkam war ich sowas von muede, dass ich mich erst mal fuer 2 Stunden schlafen gelegt habe. Dann habe ich den Rest des Tages einfach nur *sein* geuebt, ohne mich zu irgendwelchen 'ich muss dochs' zu zwingen.
Die Nacht war ziemlich erholsam, mal ausnahmsweise und alles wurde durch die Craniosakrale Therapie bei meiner Physiotherapeutin
am Dienstag abgerundet.
Wieder ein Mittagsschlaf, und es scheint, dass die Kopfschmerzen weniger intensiv sind. Sicher sagen kann ichs nicht, weil ich ja angewiesen wurde, die Schmerzmittel weiter zu nehmen.
Ich habe aber nicht wie bisher gespuert, wenn die Schmerzmittelwirkung nachlaesst, und es Zeit ist, die naechste Dosis zu nehmen, also denke ich, es wird besser.
Jetzt heisst es warten, ob das ein Placebo effekt ist, weil ich mich endlich angenommen und verstanden fuehle mit meinen eigenen Feststellungen, oder ob diese zwei 'Pseudowissenschaftlichen Methoden' wirklich diesen Unterschied machen.
Am Freitag werde ich mit dem Schmerzspezialisten telefonieren, und habe am 16. September einen weiteren Termin bei ihm.
Die Physiotherapie wird auch weiter gehen, und sobald die Materialfrage fuer die Kranioplastik geklaert ist, und die OP geplant ist, werde ich hoffentlich nocht mehr so regelmaessig Schmerzmedikamente nehmen muessen.
Ich muss schon genug Medikamente nehmen wegen Blutdruck, Schilddruese und den epileptischen Anfaellen, also bin ich dankbar um jede Pille, die ich aus meiner 'Diaet' streichen kann.
We had a thorough talk about the symptoms which led me to him, and we worked out a medication plan to get me completely pain free.
He thinks, getting the pain down to a bearable level is not enough.
But before we tweak the meds, he offered to me to try an applied kinesiology testing and treatment.
He did a few things with me and had me walk around for a bit afterwards.
I dont really know what he did there, and how his results were, but he told me he detected some traumatic reaction he thinks are results from the hemorraghe and surgeries.
I think, he spent almost an hour on this, and he asked me to keep low for the rest of the day. This is exactly what I did. When I got home, I felt so tired, I had to take a nap of 2 hours.
Then I tried to just *be* and not pressure myself to any 'I have to do' activities.
I had a rather enjoyable night, and everything was rounded up with a craniosacral treatment on Tuesday with my physiotherapist.
Another nap, and it seems the headaches get less severe.
I can not tell for sure because I was advised to keep taking the pain meds. But I did not feel the weaning out of the dosage of the pain meds as before, so I guess it gets better.
Now I have to wait and see if this is a placebo effect because I finally feel validated for my own deductions or if those two 'pseudo scientific methods really do make the difference.
I will phone with the pain specialist on Friday, an have another appointment with him on Sept. 16.
PT will go on, too and as soon as we have cleared the question which material I want to be used for the cranioplasty and we set a surgery date, I sure hope I dont have to take pain meds on a regular basis any more.
I have enough meds because of blood pressure, thyroid and seizure treatment already, so I am very thankful for each pill I can leave out of my 'diet'.
Vor zwei Tagen hatte ich den Termin mit dem Schmerzspezialisten.
Wir hatten ein ausfuehrliches Gespraech ueber die Symptome, die mich zu ihm gefuehrt haben, und wir haben einen Einnahmeplan fuer verschiedene Medikamente ausgearbeitet, um mich voellig Schmerzfrei zu bekommen.
Er denkt, die Schmerzen auf ein ertraegliches Mass runterzubringen ist nicht genug.
Aber bevor wir daran etwas aendern, hat er mir angeboten, eine Applied Kinesiology Testung und Behandlung zu machen.
Er hat ein paar Dinge mit mir gemacht, und hat mich dazwischen immer wieder auf und abgehen lassen.
Ich weiss nicht wirklich was er da konkret gemacht hat, und wie die Ergebnisse waren.
Er hat mir gesagt, dass er eine traumatische Reaktion getestet hat, die wahrscheinlich von der Blutung und den noetigen Operationen
herrruehrt.
Ich glaube, er hat fast eine Stunde mit mir damit verbracht und hat mich angewiesen, danach langsam zu machen fuer den Rest des Tages.
Oh ja, das war genau, was ich gemacht habe, als ich heimkam war ich sowas von muede, dass ich mich erst mal fuer 2 Stunden schlafen gelegt habe. Dann habe ich den Rest des Tages einfach nur *sein* geuebt, ohne mich zu irgendwelchen 'ich muss dochs' zu zwingen.
Die Nacht war ziemlich erholsam, mal ausnahmsweise und alles wurde durch die Craniosakrale Therapie bei meiner Physiotherapeutin
am Dienstag abgerundet.
Wieder ein Mittagsschlaf, und es scheint, dass die Kopfschmerzen weniger intensiv sind. Sicher sagen kann ichs nicht, weil ich ja angewiesen wurde, die Schmerzmittel weiter zu nehmen.
Ich habe aber nicht wie bisher gespuert, wenn die Schmerzmittelwirkung nachlaesst, und es Zeit ist, die naechste Dosis zu nehmen, also denke ich, es wird besser.
Jetzt heisst es warten, ob das ein Placebo effekt ist, weil ich mich endlich angenommen und verstanden fuehle mit meinen eigenen Feststellungen, oder ob diese zwei 'Pseudowissenschaftlichen Methoden' wirklich diesen Unterschied machen.
Am Freitag werde ich mit dem Schmerzspezialisten telefonieren, und habe am 16. September einen weiteren Termin bei ihm.
Die Physiotherapie wird auch weiter gehen, und sobald die Materialfrage fuer die Kranioplastik geklaert ist, und die OP geplant ist, werde ich hoffentlich nocht mehr so regelmaessig Schmerzmedikamente nehmen muessen.
Ich muss schon genug Medikamente nehmen wegen Blutdruck, Schilddruese und den epileptischen Anfaellen, also bin ich dankbar um jede Pille, die ich aus meiner 'Diaet' streichen kann.
misunderstandings? / Missverstaendnisse?
Update on the healing and procedures front of the hemorrhage from last year.
After I have had many headaches and the last one persisting over almost three months now, I decided to schedule an appointment with the neurosurgeons again to talk about the options for cranioplasty.
In the appointment the doctor said, for my age-group the preferred material for cranioplasty is either titanium or a ceramic mass, being produced out house, after a special CT imaging has been performed to produce a CNC guided 1:1 3D model of my skull/head.
I had asked why she says so and her colleague who had suggested to do the cranioplasty first, had only talked about 'some cement'
She told me, this option was something to look into, too, and that I should best inform myself via Google.
The stay there will depend on how good I feel after the surgery and can be everywhere from 3 days to 9 days.
I have left her the MRI imagings from the last few months, and asked if they could look for any possible causes for the headaches concerning the situation from the brain surgeries of late because we had looked into tension, migraine and cluster forms already and none fit.
We agreed that she will talk with the team about all of it and get back to me in either mail or phone call.
The appointment was Friday, and Sunday at 17:30 I had received the mail answer.
There she did not talk about titanium or ceramic any more, but confirmed that the surgery could be done with Palacos cement.
She also stated, that the brain has adhered to the meninges and was sucked into the trepanation through gravity and this might be the cause for the headaches.
Now I have to mail again and make my point very clear that I will feel much safer from complications when they use either titanium or ceramic as she stated in the appointment and not want to risk the palacos.
Neuigkeiten ueber die Heilung und die noetigen Eingriffe nach der Hirnblutungsepisode von letztem Jahr.
Nachdem ich jetzt einege Male Kopfschmerzen hatte, und die letzte Zeit sogar uber fast drei Monate anhaelt, habe ich entschieden, einen Termin mit den Neurochirurgen zu machen, um ueber die Moeglichkeiten einer Schaedelplastik zu sprechen.
Im Termin selbst sagte die Aerztin, dass fuer meine Altersklasse die bevorzugten Materialien Titan oder Keramik seien, die von einer Firma ausser Hauses hergestellt wuerden, nach einer speziellen CT Planungs Aufnahme aus der ein 1:1 3D Modell meines Schaedels gemacht wird.
Ich hatte gefragt, warum sie es so sagte, wohingegen einer ihrer Kollegen von 'einem Zement' gesprochen hatte.
Sie hatte mir geantwortet, dass das eine Moeglichkeit waere, die man auch in Erwaegung ziehen koennte, und dass ich mich am besten ueber Google informieren sollte.
Der Krankenhausaufenthalt wird davon abhaengig sein, wie gut ich mich nach dem Eingriff fuehle, und kann von 3-9 Tagen lang sein.
Die MRT Aufnahmen der letzten paar Monate habe ich ihr dagelassen, damit sie sich auch nochmal genauer ansehen koennen, woher meine Kopfschmerzen kommen koennten, im Hinblick auf eventuelle Operationsfolgen, weil wir vorher schon Verspannung uns Clusterkopfschmerzen ausgeschlossen hatten, und auch Migraene nicht gepasst hat.
Wir haben uns geeinigt, dass sie mit dem Team darueber sprechen wird, und sich dann bei mir via mail oder telefonisch melden wird.
Der Termin war an einem Freitag, und Sonntag um 17:30 hatte ich eine mail erhalten.
In der Mail war dann keine Rede mehr von Titan oder Keramik, aber eine Bestaetigung, dass die Plastik mit Palakos Zement gemacht werden koennte.
Sie hat mich auch davon informiert, dass sich mein Gehirn an die Hirnhaeute angelegt hat, und dass das eine Ursache fuer die Kopfschmerzen sein koennte.
Jetzt werde ich ihr nochmal mailen duerfen, und meinen Punkt sehr klar machen, dass ich mich sehr viel sicherer vor Komplikationen fuehlen werde, wenn sie entweder Titan oder Keramik waehlen, wie es im Termin ja auch gesagt wurde, und dass ich die Palacos implantation nicht riskieren will.
After I have had many headaches and the last one persisting over almost three months now, I decided to schedule an appointment with the neurosurgeons again to talk about the options for cranioplasty.
In the appointment the doctor said, for my age-group the preferred material for cranioplasty is either titanium or a ceramic mass, being produced out house, after a special CT imaging has been performed to produce a CNC guided 1:1 3D model of my skull/head.
I had asked why she says so and her colleague who had suggested to do the cranioplasty first, had only talked about 'some cement'
She told me, this option was something to look into, too, and that I should best inform myself via Google.
The stay there will depend on how good I feel after the surgery and can be everywhere from 3 days to 9 days.
I have left her the MRI imagings from the last few months, and asked if they could look for any possible causes for the headaches concerning the situation from the brain surgeries of late because we had looked into tension, migraine and cluster forms already and none fit.
We agreed that she will talk with the team about all of it and get back to me in either mail or phone call.
The appointment was Friday, and Sunday at 17:30 I had received the mail answer.
There she did not talk about titanium or ceramic any more, but confirmed that the surgery could be done with Palacos cement.
She also stated, that the brain has adhered to the meninges and was sucked into the trepanation through gravity and this might be the cause for the headaches.
Now I have to mail again and make my point very clear that I will feel much safer from complications when they use either titanium or ceramic as she stated in the appointment and not want to risk the palacos.
Neuigkeiten ueber die Heilung und die noetigen Eingriffe nach der Hirnblutungsepisode von letztem Jahr.
Nachdem ich jetzt einege Male Kopfschmerzen hatte, und die letzte Zeit sogar uber fast drei Monate anhaelt, habe ich entschieden, einen Termin mit den Neurochirurgen zu machen, um ueber die Moeglichkeiten einer Schaedelplastik zu sprechen.
Im Termin selbst sagte die Aerztin, dass fuer meine Altersklasse die bevorzugten Materialien Titan oder Keramik seien, die von einer Firma ausser Hauses hergestellt wuerden, nach einer speziellen CT Planungs Aufnahme aus der ein 1:1 3D Modell meines Schaedels gemacht wird.
Ich hatte gefragt, warum sie es so sagte, wohingegen einer ihrer Kollegen von 'einem Zement' gesprochen hatte.
Sie hatte mir geantwortet, dass das eine Moeglichkeit waere, die man auch in Erwaegung ziehen koennte, und dass ich mich am besten ueber Google informieren sollte.
Der Krankenhausaufenthalt wird davon abhaengig sein, wie gut ich mich nach dem Eingriff fuehle, und kann von 3-9 Tagen lang sein.
Die MRT Aufnahmen der letzten paar Monate habe ich ihr dagelassen, damit sie sich auch nochmal genauer ansehen koennen, woher meine Kopfschmerzen kommen koennten, im Hinblick auf eventuelle Operationsfolgen, weil wir vorher schon Verspannung uns Clusterkopfschmerzen ausgeschlossen hatten, und auch Migraene nicht gepasst hat.
Wir haben uns geeinigt, dass sie mit dem Team darueber sprechen wird, und sich dann bei mir via mail oder telefonisch melden wird.
Der Termin war an einem Freitag, und Sonntag um 17:30 hatte ich eine mail erhalten.
In der Mail war dann keine Rede mehr von Titan oder Keramik, aber eine Bestaetigung, dass die Plastik mit Palakos Zement gemacht werden koennte.
Sie hat mich auch davon informiert, dass sich mein Gehirn an die Hirnhaeute angelegt hat, und dass das eine Ursache fuer die Kopfschmerzen sein koennte.
Jetzt werde ich ihr nochmal mailen duerfen, und meinen Punkt sehr klar machen, dass ich mich sehr viel sicherer vor Komplikationen fuehlen werde, wenn sie entweder Titan oder Keramik waehlen, wie es im Termin ja auch gesagt wurde, und dass ich die Palacos implantation nicht riskieren will.
Saturday, August 22, 2009
frist day feeling like a human again / erster Tag als Mensch
I want this to go in its own post because it is a reason to celebrate.
Having splitting headaches which make you want to throw up with every movement of your head and then being left alone with it is inhumane.
The light sensitivity and sensitivity to noise still is big, and only
wearing sunglasses and earplugs makes it bearable.
But ...
Thanks to the weekend doctor, I was given relief, and after taking a slightly higher dose of what she prescribed first, I felt like ripping out trees today for the first time after more than a month and a half.
Of course I will go slow, but I can do things!!
I can get up and actually not feel like throwing up.
I can get out of the house and breathe fresh air without feeling I will faint from pain and hurt myself while falling.
I can read a book again without the feeling my eyes pop out of my skull.
I can eat something without the feeling it will come back out.
I can clean my kitties litter box without throwing up.
I can get to sleep and stay there when I turn.
Maybe next week I can go to my yoga class again.
My blood pressure is not down in the dumpsters any more.
I can sit up for longer again without having the feeling my brain is sucked out of my toes.
I can finally knit again.
I can just be and enjoy being again.
Thanks so much to the weekend doc again for taking my problems seriously and try to give relieve soon.
Believing me and not assuming you know better than me what is going on.
Now I just have to be patient and wait for the pain clinics questionair and appointment and maybe we even can find out what is causing this.
I do not believe in being in a real depression, I was overwhelmed and tired in the past. I still feel very misunderstood often and my Aspergers Syndrome can be a real bitch at times and interfere in everything I try to communicate.
I will not give up though.
There will be work with my therapist and she sure will be told about this ordeal, and we will work on my social and communication skills till I am content with them and dont keep landing in such frustrating interactions.
Having splitting headaches which make you want to throw up with every movement of your head and then being left alone with it is inhumane.
The light sensitivity and sensitivity to noise still is big, and only
wearing sunglasses and earplugs makes it bearable.
But ...
Thanks to the weekend doctor, I was given relief, and after taking a slightly higher dose of what she prescribed first, I felt like ripping out trees today for the first time after more than a month and a half.
Of course I will go slow, but I can do things!!
I can get up and actually not feel like throwing up.
I can get out of the house and breathe fresh air without feeling I will faint from pain and hurt myself while falling.
I can read a book again without the feeling my eyes pop out of my skull.
I can eat something without the feeling it will come back out.
I can clean my kitties litter box without throwing up.
I can get to sleep and stay there when I turn.
Maybe next week I can go to my yoga class again.
My blood pressure is not down in the dumpsters any more.
I can sit up for longer again without having the feeling my brain is sucked out of my toes.
I can finally knit again.
I can just be and enjoy being again.
Thanks so much to the weekend doc again for taking my problems seriously and try to give relieve soon.
Believing me and not assuming you know better than me what is going on.
Now I just have to be patient and wait for the pain clinics questionair and appointment and maybe we even can find out what is causing this.
I do not believe in being in a real depression, I was overwhelmed and tired in the past. I still feel very misunderstood often and my Aspergers Syndrome can be a real bitch at times and interfere in everything I try to communicate.
I will not give up though.
There will be work with my therapist and she sure will be told about this ordeal, and we will work on my social and communication skills till I am content with them and dont keep landing in such frustrating interactions.
truthfulness seems to be no virtue of docs
Well it all started with an extra hot day and my mom in saying 'hi' to me from behind in a restaurant in tappin right on the spot where no skull protects the brain, just skin.
I had a big seizure that same evening and after that, the headache history started.
It will be extra long, and I am not sure if you can read it all.
short version is, I tried to cover all causes of this kind of headache and all disciplines told me, it must be something else.
I first tried all the home remedies, drinking caffeine containing drinks, lemon, get more hydrated (I am good about it already but thought it can not hurt to try getting more fluids still), proper sleep, then Ibuprofen (up to 3x 400 mg and usually two of them cut it with 'normal headaches' I get sometimes) and after 14 days I gave in and saw my neurosurgeon about it, asking him, if the scar tissue in the brain might cause something like that.
He told me to up the Ibu and add Novalgin and said "in this weather everyone has a headache, even I do" and sent me home.
After another 12 days of no relief I went to my GP about it who sent me to the neuro, since he was not there (vacations), I had to go to his colleague in the same center.
This one told me, "ah well, you can take even more of the same meds and it should get better. If not I want to see you in a week"
The seizures got more frequent, so he also had me up the two anti seizure meds.
I tried and went there again, had an EEG and he told me "well it does not look any different from the one you had in March", and he told me to "give it time and go and relax" (how? I am in pain!!)
He ordered an MRI because he thought I was scared about a new hemorrage in my brain. I was not, I just wanted to have a specialist play detective with me and investigate where the pain comes from!
The imaging was of course not showing any hemmorhagic signs, but the radiologist told me, there was some irritation to the meninges (skin around brain), He did not want to say anything about treatment though.
Back to the neuro who did not have any glance at the pictures, just read the letter which stated edema at the scar site.
I have no idea what that means and if it is common one year after brain surgery to still have swelling.
I could not go to the short trip 'to relax' because of the pain, so I just stayed home waiting for the meds to kick in.
I decided to maybe find out if there were other causes to it, so went to an orthopedist, after x ray of the c spine he told me that there were no bony aberrations and it looks like I need PT to relieve tensed up muscles, and if after five weeks of that (once a week) it is not better, I am to return. He does not think it is tension headache though, my description does not fit but to give it a try.
The PT told me the same, but told me also, that she has seen some people after brain surgery, and the small paretic areas do cause great muscle tensions all over the place. She wondered why my neuro did not diagnose any of them and why I am not getting long term prescriptions and OT for it.
Well, my neuro seems to be a bit unconcerned about this, had tests done the week after I had returned from hospital and told me "all is well".
I believed him, he is the neuro after all.
Well, I had my daily limitations, e.g. felt off balance, have sensory problems that never went away, have a (suspected by me but never sincerely looked into) hemineglect in my eyes which caused many almost accidents and he says "all is well, give yourself time to overcome it, you have to willingly look more consciously to the weaker side"
Back to the headache history:
Then I had a prescheduled appointment with my regular neuro ahead, so I thought I will wait for that and talk to him about the ongoing pain (43 days up to that point of constant never getting any better pains in the head)
He told me "since all trials with pain medications failed, you have to take an antidepressant now, it will help with the tensed muscles and by the way, it will need a week or two to kick in, so give it some time, yes?"
To my question if he has an answer to how I am to get over the time till then, because (I broke out in tears) I cant endure any longer, I am in pain for so long already, he just ignored this question.
I thought, well if he thinks,it is the way to go, I will go get it,
start taking it and see a second doc and talk about the course and see what ideas there are besides another 10 to 14 days of ongoing pain.
So I went and got it, and then in the info I read, that it is also used to raise appetite in anorectics, and it is no side effect which may happen occasionally, it is in more than one of ten users.
Hello!!
He knows how I struggle over years already to get rid of those 40 pounds I gained on Fluoxetine, and the mistreatment of Hashimoto thyreoiditis already.
I have to lose the weight to not make Hypermobility Syndrome and joint pains worse, and here he tells me, I need exactly that.
I mailed him and asked if there really is no other alternative??, and he tells me, since we tried all pain meds there are, you need to go on an AD.
"Take that and all will be well, from taking it a week or two it does not make you gain weight"
There is a pattern here, I need to take it this long already to get an effect started, and then, (probably he thinks) since it is in the system already, I wont care, because it helps so well with the pain??
Fluoxetine did nothing at all helpful to my mood (made me not care, but the emotional problems persisted) and all to the fat cells. Why does he do this to me?
The next day (Weekend) I went to the emergency doc of our region, and she told me "it is too early for AD at that point of time, I think it is irresponsible that you had to suffer through this for so long already, and who is your neuro?" She took notes, and told me there are certain classes of pain meds and that we had dabbled around with class 1 meds for too long already, and she would recommend a class 2 and if it does not get significantly better after a day or two to not be hesitant, and go to the ER and have them do titration of pain meds untill I am pain free and watch over the process and check what might be the cause of it more closely than what was done so far.
She also told me that there are certain types of patients, whose health problems were played down to being caused by their psyche alone and that it happens and is so sad, causing suffering which could be prevented.
I might have waited too short, but she had told me to see a significant change towards lessening of the pain soon, so I did go to the ER.
Well the trip to the ER was just 9 lost hours and a drug screening (all negatve of course) and I guess they thought to have someone with drug seeking behaviour and no pain to be treated any different than try Paracetamol.
The docs there recommended I am to call the pain clinic Monday and get an appointment.
Doing so Monday morning revealed, It will take at least another three weeks before someone sees me there, so I went to my GP, had him fill out the pain clinic questionaire and watched his helpers put it on the fax machine and now I wait for their bunch of papers I am supposed to fill out and sure do hope their evaluation is to see me soon (shortest two weeks after they got my reply).
The class two med helped a little, so I scheduled an appointment with my GP to ask if it was possible to get a slightly stronger dose and he looked it up and gave me a rx for it.
At that same time I told him about my oddyssey to find some relieve from the pain, and how it wrecks my nerves to be treated like I dont know anything about myself. He looked up what the neuro wrote to him.
There I had it black on white, that the neuro suspects tension headache and a rebound of my reactive medium to severe depression.
I sure know the difference between tension headache and others,
been there, done that, thank you!
Am one of the few of this species who does not lie about what I do to
keep as healthy as possible.
How can someone not be down, if he had to endure so many days of pain being present and making you sick to the stomach 24 hours a day?
That is no depression, that is torture having to witness how doctors tell you to wait and wait and see if the problem solves itself.
I wont do them the favour to succumb and end my misery in taking my life and them then saying "See? I knew all the time, she was seriously ill with depression".
Now I take a slightly higher dose for the day and less for the night and I feel like a human again.
I wonder if I should give feedback to neuro how I feel about not being listened to and being lied to or if I should leave it at just that and have him prescribe the anti seizure meds to me and leave all the rest out for him not to know?
He has placed me under "psycho" in his file system anyway, I probably can not change that, so it might just hurt more to confront him with that.
If he reads this blog, he will see how I feel about how he treats me, but
I dont think, he will change on his old days.
If you really have read all the way through, you earn my respect which I give without hesitation.
I had a big seizure that same evening and after that, the headache history started.
It will be extra long, and I am not sure if you can read it all.
short version is, I tried to cover all causes of this kind of headache and all disciplines told me, it must be something else.
I first tried all the home remedies, drinking caffeine containing drinks, lemon, get more hydrated (I am good about it already but thought it can not hurt to try getting more fluids still), proper sleep, then Ibuprofen (up to 3x 400 mg and usually two of them cut it with 'normal headaches' I get sometimes) and after 14 days I gave in and saw my neurosurgeon about it, asking him, if the scar tissue in the brain might cause something like that.
He told me to up the Ibu and add Novalgin and said "in this weather everyone has a headache, even I do" and sent me home.
After another 12 days of no relief I went to my GP about it who sent me to the neuro, since he was not there (vacations), I had to go to his colleague in the same center.
This one told me, "ah well, you can take even more of the same meds and it should get better. If not I want to see you in a week"
The seizures got more frequent, so he also had me up the two anti seizure meds.
I tried and went there again, had an EEG and he told me "well it does not look any different from the one you had in March", and he told me to "give it time and go and relax" (how? I am in pain!!)
He ordered an MRI because he thought I was scared about a new hemorrage in my brain. I was not, I just wanted to have a specialist play detective with me and investigate where the pain comes from!
The imaging was of course not showing any hemmorhagic signs, but the radiologist told me, there was some irritation to the meninges (skin around brain), He did not want to say anything about treatment though.
Back to the neuro who did not have any glance at the pictures, just read the letter which stated edema at the scar site.
I have no idea what that means and if it is common one year after brain surgery to still have swelling.
I could not go to the short trip 'to relax' because of the pain, so I just stayed home waiting for the meds to kick in.
I decided to maybe find out if there were other causes to it, so went to an orthopedist, after x ray of the c spine he told me that there were no bony aberrations and it looks like I need PT to relieve tensed up muscles, and if after five weeks of that (once a week) it is not better, I am to return. He does not think it is tension headache though, my description does not fit but to give it a try.
The PT told me the same, but told me also, that she has seen some people after brain surgery, and the small paretic areas do cause great muscle tensions all over the place. She wondered why my neuro did not diagnose any of them and why I am not getting long term prescriptions and OT for it.
Well, my neuro seems to be a bit unconcerned about this, had tests done the week after I had returned from hospital and told me "all is well".
I believed him, he is the neuro after all.
Well, I had my daily limitations, e.g. felt off balance, have sensory problems that never went away, have a (suspected by me but never sincerely looked into) hemineglect in my eyes which caused many almost accidents and he says "all is well, give yourself time to overcome it, you have to willingly look more consciously to the weaker side"
Back to the headache history:
Then I had a prescheduled appointment with my regular neuro ahead, so I thought I will wait for that and talk to him about the ongoing pain (43 days up to that point of constant never getting any better pains in the head)
He told me "since all trials with pain medications failed, you have to take an antidepressant now, it will help with the tensed muscles and by the way, it will need a week or two to kick in, so give it some time, yes?"
To my question if he has an answer to how I am to get over the time till then, because (I broke out in tears) I cant endure any longer, I am in pain for so long already, he just ignored this question.
I thought, well if he thinks,it is the way to go, I will go get it,
start taking it and see a second doc and talk about the course and see what ideas there are besides another 10 to 14 days of ongoing pain.
So I went and got it, and then in the info I read, that it is also used to raise appetite in anorectics, and it is no side effect which may happen occasionally, it is in more than one of ten users.
Hello!!
He knows how I struggle over years already to get rid of those 40 pounds I gained on Fluoxetine, and the mistreatment of Hashimoto thyreoiditis already.
I have to lose the weight to not make Hypermobility Syndrome and joint pains worse, and here he tells me, I need exactly that.
I mailed him and asked if there really is no other alternative??, and he tells me, since we tried all pain meds there are, you need to go on an AD.
"Take that and all will be well, from taking it a week or two it does not make you gain weight"
There is a pattern here, I need to take it this long already to get an effect started, and then, (probably he thinks) since it is in the system already, I wont care, because it helps so well with the pain??
Fluoxetine did nothing at all helpful to my mood (made me not care, but the emotional problems persisted) and all to the fat cells. Why does he do this to me?
The next day (Weekend) I went to the emergency doc of our region, and she told me "it is too early for AD at that point of time, I think it is irresponsible that you had to suffer through this for so long already, and who is your neuro?" She took notes, and told me there are certain classes of pain meds and that we had dabbled around with class 1 meds for too long already, and she would recommend a class 2 and if it does not get significantly better after a day or two to not be hesitant, and go to the ER and have them do titration of pain meds untill I am pain free and watch over the process and check what might be the cause of it more closely than what was done so far.
She also told me that there are certain types of patients, whose health problems were played down to being caused by their psyche alone and that it happens and is so sad, causing suffering which could be prevented.
I might have waited too short, but she had told me to see a significant change towards lessening of the pain soon, so I did go to the ER.
Well the trip to the ER was just 9 lost hours and a drug screening (all negatve of course) and I guess they thought to have someone with drug seeking behaviour and no pain to be treated any different than try Paracetamol.
The docs there recommended I am to call the pain clinic Monday and get an appointment.
Doing so Monday morning revealed, It will take at least another three weeks before someone sees me there, so I went to my GP, had him fill out the pain clinic questionaire and watched his helpers put it on the fax machine and now I wait for their bunch of papers I am supposed to fill out and sure do hope their evaluation is to see me soon (shortest two weeks after they got my reply).
The class two med helped a little, so I scheduled an appointment with my GP to ask if it was possible to get a slightly stronger dose and he looked it up and gave me a rx for it.
At that same time I told him about my oddyssey to find some relieve from the pain, and how it wrecks my nerves to be treated like I dont know anything about myself. He looked up what the neuro wrote to him.
There I had it black on white, that the neuro suspects tension headache and a rebound of my reactive medium to severe depression.
I sure know the difference between tension headache and others,
been there, done that, thank you!
Am one of the few of this species who does not lie about what I do to
keep as healthy as possible.
How can someone not be down, if he had to endure so many days of pain being present and making you sick to the stomach 24 hours a day?
That is no depression, that is torture having to witness how doctors tell you to wait and wait and see if the problem solves itself.
I wont do them the favour to succumb and end my misery in taking my life and them then saying "See? I knew all the time, she was seriously ill with depression".
Now I take a slightly higher dose for the day and less for the night and I feel like a human again.
I wonder if I should give feedback to neuro how I feel about not being listened to and being lied to or if I should leave it at just that and have him prescribe the anti seizure meds to me and leave all the rest out for him not to know?
He has placed me under "psycho" in his file system anyway, I probably can not change that, so it might just hurt more to confront him with that.
If he reads this blog, he will see how I feel about how he treats me, but
I dont think, he will change on his old days.
If you really have read all the way through, you earn my respect which I give without hesitation.
Monday, August 10, 2009
seizures/Anfaelle
After a month of calm there it was again yesterday.
Jacksonians are so so scary you feel the electricity start in the little toe, spreading to all toes, middle foot, wander up the calf, do strange and hurtful things with the muscles around the knee cap, spread to the big muscles in the upper leg.
You wonder if it will go further, if you will lose consciousness for the first time.
The pulsing, the electrical charges hurting, nothing can be seen from the outside, but you feel the loss of control.
The weakness afterwards, just wanting to lay there, recovering. Want to never have to feel it again.
What is better? to stay conscious or to not be witness of this loss of control?
----------------------------------------------------------------------------------------------------------
Jackson Anfaelle sind so gruselig, Du fuehlst, wie die elektrischen Schlaege im kleinen Zeh anfangen, sich auf alle Zehen ausbreiten, auf den Mittelfuss, wie sie die Wade hochwandern, komische und schmerzhafte Dinge mit den Muskeln um die Kniescheibe anstellen, sich weiter ausbreiten auf die grossen Muskeln im Oberschenkel
Du fragst Dich ob es weiter hoch gehen wird, ob Du das erste mal das Bewusstsein verlieren wirst.
Das Pulsieren, die elektrischen Entladungen schmerzen, von Aussen kann nichts gesehen werden, aber Du fuehlst den Kontrollverlust.
Die Schwaeche danach, nur da liegen wollen, sich erholen. Der Wunsch, sowas nie wieder fuehlen zu muessen.
Was ist besser? bei Bewusstsein zu bleiben oder nicht Zeuge dieses Kontrollverlustes zu sein?
Der countdown hat von Neuem begonnen.
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