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.

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.

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?

The count down has started anew.

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Nach einem Monat der Ruhe, war es wieder da, gestern.
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.



Thursday, July 02, 2009

Auf Wunsch einiger Leute ...

werde ich meine englischen Postings nach und nach mit deutschem Text versehen, so dass diejenigen, die sich im englischen nicht so wohl fuehlen, auch wissen, was ich so von mir gebe.

Allerdings wird es eine Weile dauern, und ich gebe keine Garantie, dass ich jemals mit den frueheren Beitraegen hinterher komme.

if only... wenn ich doch nur ...

I could do so many things on the computer by myself.
I really would like to be able to get the pictures I take with the digital camera down on the computer without any help.

I seem too illiterate on the computer to learn, and the command line nature of free BSD does not help me learn easier.

I finally managed to knit up the yarn I dyed some almost two years ago, entitled summer fruit sorbet, dyed with easter egg colours and dandelion.
It became nice tabi style socks and was started a few days prior to the whole ordeal with hospital last year.

Since my knitting skills were affected by this brain surgery and healing time, too, they reflect this development from a twisted knit rib with cables to fading out the cables and the twisted rib to plain stockinette stitch and up on top the normal 2x2 ribbing my hands are used to.

I wore them in sneakers once and the yarn started to felt together on the heels even though it is meant to be non felting.

Pictures will be added as soon as my husband has time to go through the procedure of uploading again.
---------------------------------------------------------------------------------
Deutscher Text:
so viele Dinge am Computer selbst machen koennte.
Ich waere wirklich gerne in der Lage, die Bilder, die ich mit unserer Digitalkamera mache, auf den Computer zu bekommen ohne fremde Hilfe.

Scheinbar bin ich dafuer zu unerfahren am Computer, um zu lernen.
Die Kommandozeilenstruktur von unserem Betriebssystem free BSD hilft mir da leider auch nicht gerade, leichter zu lernen.

Endlich ist es mir gelungen, das GArn zu verstricken, das ich vor fast zwei Jahren gefaerbt hatte. Es hat den Titel Sommer Fruchtsorbet bekommen und wurde mit Loewenzahn und Ostereierfarben gefaerbt.

Es wurde zu Tabiaehnlichen Socken und ich hatte es ein paar Tage bevor die Kopfgeschichte mit dem langen Krankenhausaufenthalt letztes Jahr stattfand angefangen.

Weil meine Faehigkeiten auch von den HirnOPs und der Heilung beeinflusst waren, zeigen die Socken das auch durch die Entwicklung des Musters. Angefangen mit einem rechts verschreankten Rippenmuster mit Zopfeinlagen zu aufhoeren der Zoepfe und uebergehen zu einfach nur rechten Maschen rauf zum Rippenrand 2 rechts 2 links, den meine Haende schon gewohnt sind.

Getragen habe ich sie ein mal in Turnschuhen und das Garn hat an der Ferse angefangen zu filzen, obwohl das Garn filzfrei sein soll.


Bilder kommen noch nach, wenn mein Mann Zeit hat, mit mir die Prozedur des Hochladens nochmal durchzugehen.

Monday, June 08, 2009

how many books have you read?

I was looking at a friend's blog and saw this, apparently most people will only have read up to 6 of this list I know it is more books for me, and some in German and english. Let's see how I fare.
If you want to do this, too ... here are the Instructions:

Look at the list and bold those you have read.

Bullet those you intend to read.

Italicise the books you LOVE.

Post your list so we can try and track down these people who've only read 6 and force books upon them.

1. Pride and Prejudice - Jane Austen

2. The Lord of the Rings - JRR Tolkien

3. Jane Eyre - Charlotte Bronte

4. Harry Potter series - JK Rowling

5. To Kill a Mockingbird - Harper Lee

6. The Bible

7. Wuthering Heights - Emily Bronte

8. Nineteen Eighty Four - George Orwell

* 9. His Dark Materials - Philip Pullman

10. Great Expectations - Charles Dickens

11. Little Women - Louisa M Alcott

12. Tess of the D'Urbervilles - Thomas Hardy

* 13. Catch 22 - Joseph Heller

14. Complete Works of Shakespeare

15. Rebecca - Daphne Du Maurier

16. The Hobbit - JRR Tolkien

17. Birdsong - Sebastian Faulks

18. Catcher in the Rye - J D Salinger

19. The Time Traveller's Wife - Audrey Niffenegger

20. Middlemarch - George Eliot

21. Gone With The Wind - Margaret Mitchell

22. The Great Gatsby - F Scott Fitzgerald

23. Bleak House - Charles Dickens

24. War and Peace - Leo Tolstoy

25. The Hitch Hiker's Guide to the Galaxy - Douglas Adams

26. Brideshead Revisited - Evelyn Waugh

27. Crime and Punishment - Fyodor Dostoyevsky

28. Grapes of Wrath - John Steinbeck

29. Alice in Wonderland - Lewis Carroll

30. The Wind in the Willows - Kenneth Grahame

31. Anna Karenina - Leo Tolstoy

32. David Copperfield - Charles Dickens

33. Chronicles of Narnia - CS Lewis

34. Emma - Jane Austen

35. Persuasion - Jane Austen

36. The Lion, The Witch and The Wardrobe - CS Lewis

37. The Kite Runner - Khaled Hosseini

38. Captain Corelli's Mandolin - Louis De Bernieres

39. Memoirs of a Geisha - Arthur Golden

40. Winnie the Pooh - AA Milne

41. Animal Farm - George Orwell

* 42. The Da Vinci Code - Dan Brown

43. One Hundred Years of Solitude - Gabriel Garcia Marquez

44. A Prayer for Owen Meaney - John Irving

45. The Woman in White - Wilkie Collins

* 46. Anne of Green Gables - LM Montgomery

47. Far From The Madding Crowd - Thomas Hardy

48. The Handmaid's Tale - Margaret Atwood

49. Lord of the Flies - William Golding

50. Atonement - Ian McEwan

51. Life of Pi - Yann Martel

52. Dune - Frank Herbert

53. Cold Comfort Farm - Stella Gibbons

54. Sense and Sensibility - Jane Austen

55. A Suitable Boy - Vikram Seth

56. The Shadow of the Wind - Carlos Ruiz Zafon

57. A Tale Of Two Cities - Charles Dickens

58. Brave New World - Aldous Huxley

59. The Curious Incident of the Dog in the Night-time - Mark Haddon

60. Love In The Time Of Cholera - Gabriel Garcia Marquez

61. Of Mice and Men - John Steinbeck

62. Lolita - Vladimir Nabokov

63. The Secret History - Donna Tartt

64. The Lovely Bones - Alice Sebold

65. Count of Monte Cristo - Alexandre Dumas

66. On The Road - Jack Kerouac

67. Jude the Obscure - Thomas Hardy

68. Bridget Jones' Diary - Helen Fielding

69. Midnight's Children - Salman Rushdie

70. Moby Dick - Herman Melville

71. Oliver Twist - Charles Dickens

72. Dracula - Bram Stoker

73. The Secret Garden - Frances Hodgson Burnett

74. Notes From A Small Island - Bill Bryson

75. Ulysses - James Joyce

76. The Bell Jar - Sylvia Plath

77. Swallows and Amazons - Arthur Ransome

78. Germinal - Emile Zola

79. Vanity Fair - William Makepeace Thackeray

80. Possession - AS Byatt

81. A Christmas Carol - Charles Dickens

82. Cloud Atlas - David Mitchell

83. The Color Purple - Alice Walker

84. The Remains of the Day - Kazuo Ishiguro

85. Madame Bovary - Gustave Flaubert

86. A Fine Balance - Rohinton Mistry

* 87. Charlotte's Web - EB White

88. The Five People You Meet In Heaven - Mitch Albom

89. Adventures of Sherlock Holmes - Sir Arthur Conan Doyle

90. The Faraway Tree Collection - Enid Blyton

91. Heart of Darkness - Joseph Conrad

92. The Little Prince - Antoine De Saint-Exupery

93. The Wasp Factory - Iain Banks

94. Watership Down - Richard Adams

95. A Confederacy of Dunces - John Kennedy Toole

96. A Town Like Alice - Nevil Shute

97. The Three Musketeers - Alexandre Dumas

98. Hamlet - William Shakespeare

* 99. Charlie and the Chocolate Factory - Roald Dahl

100. Les Miserables - Victor Hugo

crazy, chaotic, cantankerous

Life can be so challenging.

I have had pollen allergise for more than 20 years now, and the last testing revealed a dust mite allergy now, too.
I am supposed to have someone vacuum my place every day, but who will do this?
Hubby can not since he only sees cluttered spaces and can not vacuum around if he has to shift too many things.
I need to declutter, or reorganize. Clear floor space.
This is nothing new, I am working on that for so many years already, and am more failing than winning so far.

A year has passed since I was in hospital with the first brain surgery.
It seems the inner chaos will not budge as much effort I put into it as I can.
Energy levels are nowhere near as high as I wish for them to be.

Today we went to the home builders store to get some shelve boards for my room.
Now I have to wait till the mid day rest and quiet time in the house is over before I can rummage around, setting the hooks on the right place, putting the boards up and take the clear storage bins up onto the new shelve.
Some room on the floor shoul be clearable this way.

I really do not like the fact that I seem to get everything messy.
I never happened to keep food or something like it in my room to make it buggy, icky, but the stuff I have, needs to be put away in an orderly fashion so I can still have visual clues what is where.
I tend to forget what is behind doors and in view proof containers, so I tend to have 'important to me' stuff lying around everywhere.
There has got to be a way of achieving this without it laying around in heaps. Chronological heaps of documents, stuff I am working on in those nifty foldable basket containers, books I am reading, things and clothes that wait for the sewing machine to be fit again for altering (losing weight is fun, but not if all trousers are 'low bum' style afterwards. Not very flattering.
It plain is really chaotic and collects dust like no other thing.

Inner chaos was with me from the start, not being advised as a kid what it means to 'pick up' things, just the expectation to do it and no believing me if I whined I did not know how to start or where to start and how to prioritize or categorize did not help me to set up any routine whatsoever.
Cleaning as in mopping floors or keeping the kitchen counter
cleared to be able to prepare meals only works if it is no galley type kitchen.
I grew up in a kind of combined kitchen/every day living room type where there is enough room for a table, chairs and people were meeting there all the time and mom was struggling to keep it orderly. I had no role model, dad coming home from working in shifts and being angry all the time and expecting without showing or telling how, thrashing around stuff and destroying it has left me with a high level of uneasyness if someone only mentions tidying up.
When I was at UNI I had a room with a one plate heating unit and nothing else, so I had one shelf for my two plates, mugs and drinking glasses and the silverware was upright in one of the mugs.
Since I did not have many things to have standing around, it was no problem to keep order there.
Then, moving to a one room apartment with a non window hole for kitchen, the doom began, I did not like being in there, so I just kind of went in, got what I needed and went into the room with the window, for eating, drinking tea and such activities, the washing of the dishes could not be done out there, I had to go to this hole to do it.
So I did not do it at all, amassing lots of dishes before I felt like having to do it now. Not being able to because it was too much, and no space to put the clean dripping wet stuff for towel drying later.
My stuff in the room was rather easy to manage, since I only had the basics there, driving home over the weekend to do laundry and backpacking everything back and forth. The dirty clothes went into the backpack, and the books and papers were on the seven boards of a bookshelf together with the stereo unit.
Still it happened that it got more and more chaotic.

Unhappy but helplessness once more.

"I do not know how to do it" is still present, and no help or ideas near anywhere.
I very seldom feel the urge to start tidying up, and if I do it happens to always be a time where I am really alone for a certain ammount of time which very seldomly happens since hubby works from home and is very seldomly away for more than an hour.

We do have the rather biggish kitchen, no room for a table for sitting there. Still the cupboard space seems to be not enough.
Maybe restructuring would help there.
I try this with my craft and kittie room right now and really hope I am no helpless case.

And nobody say, I am supposed to get rid of the kitties or my creative stuff, It is as essential to me as are the glowing, cough inducing sticks, the ethanole and TV set for others.
We do not use either one of them in this household.

Lots of time for reading, spinning, playing with the kitties, painting, drawing, wet felting and other creative activities.
They all need preparation time and room.
So I want to have a nice area to do all that in.


Maybe some day I manage to find my inner eqilibrium and it starts shining through on the outside, too.
Untill then it will be a neverending fight against entropy.