Good news, everyone!

Borrowing the catch- phrase of Professor Farnsworth from Futurama, I have some good news. I went to hospital to have a check up for my BIH at the neurology department. They looked at history of intercranial pressure taken at each lumbar puncture/ spinal tap I have had and saw that it has slowly been decreasing over the last 2 and a half years. I also have not been getting many headaches lately and they say the headaches I have been getting are tension headaches. Based on my history and how I have been doing the last six months, they believe the BIH has resolved itself and that I am well enough to go off my medication. This is VERY good news because the medication I was on for BIH had some horrible side effects and I was pretty sure it was interacting with my antidepressants. The only way to see if the BIH is gone is to take me off the meds. SO no more painful pins and needles in my hands and feet, no more fatigue, no more nausea and no more having to  pee 75 times a day!. Yipeee!!! Let's just hold thumbs and hope that it is gone.

And my second bit of good news is that I have a job interview on Friday for a PA/ Junior Journalist position at a Christian magazine. I didn't deliberately apply for a job at a Christian magazine, it just came up. I had to send in samples of my writing. One of the samples was "10 Unusual degrees" from this blog. Obviously I changed it and spruced it up a little.I had to do the Myers- Briggs Personality test and answer all these questions about my commitment to Christianity etc before even getting invited to the interview. I have studied the Myer- Briggs closely during the course of my degree so I know how it works and could easily have cheated on it. But since I want to work for a company that I actually fit into, I didn't. I was a surprised and a little offended with the questions about Christianity since I see that as very personal but answered them as honestly as I could ( I didn't go as far as to tell them I was an atheist for several years). Because of the answers I gave, I really didn't expect a call back.

As I haven't gotten the job yet and I will have to answer some tough questions in the interview (I don't have a SA drivers license/ what exactly have I being doing the last four years) I not exactly celebrating. But I got an interview so at least that is some achievement for now. I will be nervous on Friday, it's the first job interview I have had since living in America and I am facing a lot of competition. I need to convince them that I can both study and work full time. I am also dreading any personal questions they may ask. I have had to borrow money from my sister to buy clothes as I just don't have anything that is suitable. I feel a lot of pressure to succeed for my family.

Please pray for me if that is your inclination, otherwise you can just wish me luck!!.

If there was one piece of advice I could give everybody...

It would be to value your health. Use it. Take care of it. Thank whatever deity you may believe in for it. Because once it is gone....it's like air- you don't notice how much you need it until you can't breathe. Or your knees...you miss them when they're gone. I hope nothing happens to my knees....

Sadly, this is something that I only realised once my health was taken from me. I sit now, barely able to type because my hands are in bandages due to chronic eczema. BIH and diabetes has robbed my of my youth. I can't have kids because it's too dangerous and nothing works properly anyway. And mental illness has robbed me of...everything.

I remember the days when I could still run and climb trees and when I took no pills. They seem incredibly far away.

So, yes value your health. It is one of life's greatest gifts.

Milo the trooper! Me the pooper!

I feel like I am over blogging this week but I just wanted to let everyone know that Milo had his surgery this morning and it went very well. He is awake, eating and trying to move around. Unfortunately he has to be kept absolutely still for 7 days in a cage. I have never seen him still for longer than 7 seconds and we don't own a cage so he will have to remain at the welfare for the rest of the week. We live half an hour away from the welfare so I actually haven't seen my baby boy since I brought him in on Saturday and I have this weird fear that he will have forgotten who I am already. I will be seeing him tomorrow though.

I didn't want to go into hospital today until I had heard about Milo and by the time we had, it was really to late to go. This might not have been very wise but I have been steadily losing faith in those people. Despite the tremendous pain I have had since my lumbar puncture/ spinal tap last Wednesday, I have also gone deaf in one ear and become exhausted by doing the simplest of tasks like making lunch!!. What a crime it is for a girl in her mid- twenties...who once lead the high life living in London, very active, social etc to have been reduced to this.  I f**king won't accept this!. What type of a life is this to live?. For those of you that are mothers you can only imagine what it has been like for my mother to watch this happen.

Thank- you again for all your support, it means the world to me :)

Update on my baby Milo: A very weird story

Milo's tail is not broken just very bruised but unfortunately he has suffered a very bad break to his back fema and they will have to do surgery on him tomorrow to insert pins. They say that it is good that he is still very young because his bones are still soft and have better chance of healing normally.

The surgery alone will cost R2500 ( about 360USD ) and they require a 50% deposit before they even do the surgery. Hearing this news yesterday was like a death sentence....until my Mom and I get a job money has been quite tight and we just couldn't come up with that amount especially in such a short space of time so the only other alternative was to put him down which is what my Dad was lobbying for- he said he would not pay for surgery for a cat. My poor Mom burst into tears when I told her the news- she feels so responsible even though it is not her fault. She spent most of yesterday phoning around to all sorts of weird and wonderful places and foundations to see if we could get it done for less but that R2500 is WITH the animal welfare discount.

I became desperate- I was meant to be in bed but landed up laying on the floor next to my Mom as listening as each place she phoned turned us down. I actually felt nothing- something I can maybe contribute to the high dose of antidepressants I'm on, but my pain only got worse as the day wore on. I resolved that I was not going to let my cat die, I gathered up everything I had of value- my camcorder and camera printer my aunt gave me, my guitar I've had since I was a little girl, the gold charm bracelet my mother gave me for my 21st and was going to pawn them first thing this morning. I was even going to steal the 2nd microwave my Mom has. I told my Mom to phone back that bloody woman from animal welfare and tell her I would work for free to pay it off.

My Mom phoned her and spelled it out that we just did not have the money but we were not going to let our baby die so we were planning to pawn things and I would be willing to work for them. The woman did change her tune when she heard I was willing to work but she said it was not them I had to pay it was the vet.

This morning my Mom phoned this same woman back again...I don't know the details of the conversation  but she told my Mom she was willing pay for the surgery herself and we could pay her back. This is the same cow that snapped "This is not a free service" when I first brought Milo in. I don't know what the hell has gotten into her. All she told my Mom is that we didn't look like the sort of people that would "run". So the cow has turned out to be a night in shinning armour.

It gets even more....bizarre. My told her I was serious about volunteering ( I had been planning to even before Milo had his accident). My Mom also told her ( and I HATE it when she does this ) that I had been ill for a very long time. This woman then asked "Is it mental illness?" !!!! (Seriously do I have it tattooed across my forehead?!!). My Mom (bless her) told her I suffered from depression and an anxiety disorder but also the intercranial hypertension. It turns out this woman also suffers from severe depression and panic attacks. Honestly I don't know what to say...right now I am just grateful that my Milo will be okay.

I didn't post this yesterday because I didn't want it to seem like I was asking for money or anything. That is not, never has been nor never will be my intention with this blog. Granted I probably will still have to pawn all that stuff because there will be other expenses besides the surgery. Milo will  have his surgery tomorrow morning, this lady said that he has been in high spirits- eating, drinking and purring so that is a good sign. I will also be going back to hospital tomorrow to sort myself out. It's a holiday today for many countries- it's Human Rights Day here in South Africa. So by the time a lot of you read this Milo will hopefully be on the mend. Thanks to Wendy for the pet pray websites, I plan to put Milo's name on it.

This week...

With the happenings of last week, I really didn't think it was appropriate to continue my post on the hereafter, not to mention the actual movie Hereafter had a scene of a tsunami engulfing a coastline- I read somewhere that they actually stopped showing the movie in Japan because of this. I will continue this post in a few days.

And I felt, and have been feeling all this week that in the grander scheme of things my musings really didn't matter. It's the same feeling you get when you gaze up at the stars at night, realise how unimaginably big the universe is and how insignificant you are...not even a grain sand. I read somewhere that there are more stars in the universe than there are grains of sand on this earth.

I have been truly devastated by the events happening in Japan. I actually haven't felt this way since 9/11. All week I have seen pictures of carnage, bewildered people, bodies covered and landscapes forever changed. I wish there was something I could do but I know that's impossible Those of you who have been reading this blog for a while will remember that one of my dreams was to go and teach English in Japan after I graduate. My fascination with Japan started when I was the only girl in my class that would watch Dragonball Z with the boys. Forget I said that.

It's also been a week of "one-thing-after-another". On Monday I had my last session with my psychologist. My godfather is unable to pay for my sessions anymore. Obviously this is a huge loss but I am so grateful to him for his kindness, it saved me. Last Friday, I refused to go to therapy because I found out my Dad was e-mailing my therapist in what I think was an attempt to influence her. As far as I know you have to get the patient's consent to e-mail their therapist. It was the worst breach of privacy and although it may seem childish I decided not go to make statement that this was one area he would never be able to control

I ended a friendship last week before the earthquake. Believe me this was not something that do often and I didn't take it very lightly. I am still wondering if I did the right thing. Basically it boiled down to: "How long am I going to let this girl hurt me?" "Do I really have time for a flake?. The answer to both questions was in the negative. You see I have been really blessed when it comes to friends. I don't have a truckload of friends like my sister, but the friends I do have,have walked through fire with me, loved me unconditionally are constant sources of hope. I would do anything for them. Once you have had a friendship like that you really don't have time for the social butterflies who are here today and gone tomorrow but still depend heavily on you. That's what this girl was.

I was in hospital on Wednesday. What was meant to be a check up with the combined services of neurology and psychiatry turned into my having lumbar puncture/ spinal tap number 6. The actual procedure went well but it is now Friday and I STILL have a headache from the LP and body aches. I feel like I am 80. My one daily focus right now is painkillers.

For the last two days the surrounding area where I live has been engulfed in flames. The result of some fog throwing a cigarette butt out of a car window. At night the symphony of flames dancing with the moon can be very beautiful but once a new day dawns reality hits. Magical forests are now piles of ash, wild animals have burnt to death, the once beautiful landscape blackened. This morning I wondered where Basil and Buttercup were. Along the main road there is a mass exodus of fire trucks carry filthy, exhausted firemen. While new shiny ones go in the opposite direction, ready for battle.

Everything seems so big at the moment and I feel so little! So I am going to lay this very achy little head of mine down and try and get some sleep...

'Tis the season to be (exhausted, stressed, trapped, MURDEROUS) Jolly

WARNING: For those of you that are having a great holiday season or possess the Christmas spirit with all the warm fuzzy feelings that come with it, this will be an antidote and will most likely put in in a bad mood after reading.

It's the most wonderful time of the year!!, as the song goes. Christmas carols are abound with "Parties for hosting marshmallows for toasting and caroling out in the snow" and then there is the "Chestnuts roasting on an open fire, jack frost nipping at your nose". "All for "kids from one to ninety- two" blah blah , "Deck the halls with bells of FREAKING holly"

Bullshit! For one I live in a place where it isn't even winter at Christmas time- today the mercury reached 45C ( 113 F) in some areas where I live. Instead of playing in the snow, we play in the sand on a beach- if we live near to one. Most houses in South Africa are not built with air- conditioners, they are expensive and considered a luxury. So normally on Christmas day we are seeking a pool instead of a fire.

I could deal with that, I have been dealing with it my whole life. But what drives me bonkers at this time every year is that both fate and my family become almost uncivilised.

There is so much going that is causing us to be less than jolly- I might as well put it in point form. Note: This is a rant post some of the situations going on I can't help but be sarcastic about, but there are others that are truly tragic:

• My writing has gone to pooh, I don't know if it's because I feel uninspired due to serious depression, medication or if I am just burnt out with writer's block.  
• My parents and I are in serious debt- my parents under for the breakdown of their business AND my Dad's foolishness with money. As for me?. Let me just put it this way I was very young...overseas...with a credit card. Go figure.
• Because of the lack of money there will be no presents what so ever this year- even buying stuff for a lavish meal seems wrong  knowing that we owe so many people so much money.
• My grandmother who is in the final stages of Alzheimer's broke her hip nearly four months ago and has required round the clock care ever since then (She lives with us) because of this we have never really had the chance to unpack the huge old house we just moved into. This is just the year that my mother's best friend and her family have decided to come to us for Christmas ( we usually go to them ). So we are now in a massive hurry to fix, clean, unpack and decorate the house before Christmas Eve. Take note...this is all DIY.
• The above is in addition to all the cooking, baking and shopping that needs to be done.

On to the more serious stuff:

• I have just started Amitriptyline and am experiencing three of the side effects badly... dizziness, drowsiness and nausea. Add this to extreme headaches from my BIH and horrible depression- not a good mix.
• As I have said before my grandmother requires full time care. If you were ever present for a loved one in the final stages of Alzheimer's you will know the heartbreak, the horror, exhaustion, anger and frustration that goes with it. She takes up literally every minute of our day, we have to go through hearing her scream, shout and talk ALL the time. She can't form coherent sentences to communicate. She is terrified of being alone, yet when we come to her she doesn't know who we are. She's at home but she doesn't know where she is. She sees things that aren't there. Now and then she has lucid moments where she cries and cries her shame, she calls my mother by her childhood nickname and tells us she loves us. Moments later she will descend into darkness again and begin yelling and screaming.
• My Dad hates my Mom's sister
• My Mom's sister hates my Dad
• But my Mom still wants them to spend Christmas under the same roof...because it is "a time for family"
• My Dad's treatment of me has become worse and worse over the last couple of weeks. He thinks I use my depression as an excuse and the reason I am now suffering BIH is because I "did it to myself". He also has no regard for the fact that my meds have serious side effects. Therefore, like my sister, I get no support from him. His constant bullying and downright meanness are wearing me, down making me bitter. My mission to forgive him of the physical and emotional abuse he inflicted on my older siblings and I in the past, is becoming almost impossible. One thing I will still blog about is the part he had to play in my addiction to food and I can tell you right now it is bad. E.g He saw me in the kitchen just now with something in my mouth. The ssarcasm was literally dripping when he said, "Eating again, are we?" and he was getting ready to launch into a full diatribe with the sole purpose to make me feel like crap when I cut him off short, "No Dad, I'm just taking my meds" and I took a huge gulp of water to swallow the ten tablets I had in my mouth.

All of the above mentioned is happening right now....with Josh Groban's Christmas CD playing in the background. Now you know why I said fate as well as my family can be almost uncivilised this time of year. We are a family of misfortune, but it is funny how some of the worst misfortune will save itself until Christmas. And we are all driving each other crazy!.

As depressing as this may sound the perfect Christmas for me would be to be holed up in a deserted house (my sister's flat in Cape Town is the only possibility) with a bag of Quality Street , a take away and a few Christmas DVDs and spend Christmas all by myself with the space and freedom to reminisce on the good and the bad, to cry and to sleep.

I am praying to God to help us, help me through this time. I am praying for strength to be there for people in my family that need me and to take care of myself at the same time. Tonight my mother and I are putting together a shopping list of food we need to buy. Tomorrow I start my marathon of baking as well as trying to turn the dinning room from a storeroom back into a dinning room again. I used to be the biggest Christmas spirit of all time I pray that in all this I will find it again :).

My two days in hospital

I wasn't in hospital per se- I basically went home to sleep- Thank God. But I have had to spend the past two days here:

Tygerberg hospital, the 2nd largest hospital in the world...otherwise known as a big- ass state hospital with passages over a mile long. And we walked up and down these passages from Neurology to Psychiatry and back again "conveniently" located on two opposite ends of the hospital. To give you an idea of the length of said passages:

Note how the lights kinda disappear into oblivion

Stopping for a break halfway through

I've said it before on this blog....whatever sadist designed this hospital- knowing that sick patients would have to walk the length of these passages- should be shot. My mom tells me that when this hospital was being built, in the 1970's there was great excitement as it was to be a "high tech" facility with "breakthrough technology"....as you can see that is no longer the case.

As I have also said before, I am truly grateful for the medical care that I am getting- it isn't fancy or comfortable but it has saved my life. I would be blind if it wasn't for neurology and the employment policy at this hospital has ensured that my Dad doesn't have to fork out half his pension each month for my meds (seriously) I get them for free. Not only that, when I think of the lack of medical care some of my fellow South Africans have and  how hundreds of thousands of people on the African continent die each year because they have no medical care. I am so thankful.

But because I am thankful it doesn't mean I have to just love everything about this hospital and it doesn't mean that certain things don't make me very, very angry.

I saw something yesterday that was the absolute last straw and made me absolutely livid... take a look:

See, I made it extra large. Not very spectacular right? . Looks like some construction going on.

Well here is the story. It was going to be a long wait for the neurologist so the ward secretary suggested that my Mom and I go have some coffee (aka coffee- flavoured water). On our way to the cafeteria we passed the "new" psychiatric ward. Whenever I pass the psychiatric ward I can't help but stop, there is always a whirlwind of emotion that goes through my head. Thoughts like, "Will I ever land up here?" "What has stopped me from becoming like the people in this ward?" "What will push me over the edge" race through my head.

Almost immediately after we stopped my Mom and I were caught up by the most disgusting smell and it seemed to be coming from the ward. I went up to the door and peered through the crack, the passage was deserted, the atmosphere radiating out of that door was eery. When I turned to walk back I saw that the side doors leading into a courtyard were open and there were a whole lot of flies buzzing in and out of the door. The source of the dreadful smell was that pile of rubbish in the picture above.... RIGHT NEXT TO THE PSYCHIATRY WARD!!!!. I walked a little closer...I'm telling you people the smell was putrid. The pile of rubbish was actually a lot bigger than depicted in the picture it consisted of wood, rubble, plastic, paper and then food in various stages of decay and other green, black and grey slimy things that I really didn't care to get any closer to. Basically it was a pile of sewage. You cannot see the flies in the picture but believe me they were having a field day

I was in so much pain in these pictures, both physically and emotionally, seeing this awful mess- a total lack of respect for human beings who are unable to help themselves- blew away the paper thin barrier holding back a total meltdown. That they have placed these people in underground, in the bowels of the hospital where no one has to see or hear them, away from sunlight, is bad enough. Dumping a pile of stinking rubbish outside their window that could possibly cause further distress and disease takes the bullshit cake. My mother reacted as any loving mother would by getting me out of there as soon as possible. I plan to write some newspapers about this and obviously complain to the hospital.

I guess really should give an update on my BIH, depression and GAD. The first day I saw a psychiatrist (aka doctor studying to be a psychiatrist). I knew right from the start that this was going to be a useless appointment. I told her that things did get better for a while, but after the break with my psychologist they are now worse than ever, I didn't get a chance to tell her I had been suicidal again because she cut me off and told me that "We don't really want to put you on more medication (I already knew that), I think you should go see a psychologist". That's what I have been doing you stupid woman... did you even listen?!. The outcome of the appointment was that they will try and get me to see a psychiatrist at a hospital closer to me and I go back in March, no doubt to see a different doctor studying to be a psychiatrist.

On to Neurology... a lot of time was spent trying to track down my neurologist (aka a doctor studying to be a neurologist)- they close for the Christmas holidays. Eventually my Mom had him paged and spoke to him on the phone where she demanded that he come in to see me. I was told to come in the next day. We were there bright and early the next morning and  waited for four hours to find that my neurologist and palmed me off on his buddy- surprise, surprise the dude that performed or should I say messed up my lumbar- puncture (spinal tap) three weeks ago. How- ahem- happy I was to see him.

This is where it starts to get funny- he refused to see me with my mother, telling her he would chat to her afterwards ( she had wanted to throttle him after my lumbar- puncture). Judging by the look on her face I immediately began to feel sorry....for him. When he asked what had been going on with me I stifled the urge yell, "You f**king mutilated my spine, you dumbass" and calmly told him that I had been extremely ill since the LP and I still had enormously painful headaches accompanied by dizziness, nausea and extreme fatigue. Meanwhile outside...where my Mom was listening through a hole in the door, in came strolling my neurologist. Poor guy... my Mom pounced like a cat on a bird. I could hear her threw the door and immediately fell sorry for whoever was on the other side of her wrath.

Dude checked my eyes- found my optic nerves weren't swollen, although they did appear scared. He asked me a few questions but I already knew what he was thinking: He didn't have a clue what was wrong and that most likely my depression was to blame. We spoke about surgery and it turns out that although my spinal pressure was high, they will not be doing surgery at this stage. I then told him nonchalantly, "So I guess  it's all in my mind then" He didn't really know what to say but eventually said "It's real to you- that's what matters" I told him good luck with my Mom. He told me I was a sweet girl.

We went back out into the passage where Mr. Neurologist had amazingly been able to calm my mother down. We stood talking for a while with him and Dude doctor. The compassionate side of them eventually emerged when Dude doctor said, " I would say now that your BIH is under control but your depression is definitely out of control". It was probably the only thing Dude doctor was able to hit the nail on the head about. Immediately I began tearing up and it was that that put them into action. They called in the psychiatry rotater and for a while there was some finger pointing going on. Neurology were telling Psychiatry that my problem was clearly psychological. Psychiatry were telling Neurology that it was clearly neurological. Somewhere between all of this I began to think about Homer Simpsom...for some reason. Eventually the heads of both departments got involved, seeing them trying to meet each other half way to find a solution was interesting. Eventually it was decided by everyone to put me on Amitriptyline an anti- depressant used a lot by neurology for management of migraines. I have been on it before. Needless to say my Mom was not happy- another pill. I have to go back for another eye test in January and will hopefully have my checkup the same day.

In between all this we found this little guy:

 The pictures don't really do justice to how very tiny this little sweetheart was. His name is Joshua and he was born prematurely. He is a month old and only weighs 2.2kg (4lbs 8oz). He has to wear dolls clothes because he is so tiny. When this picture was taken he was about to have surgery for cataracts on both eyes. His mother was beaming with pride and loved showing him off. We told her that he will be a piano player one day because his miniature hands have such long fingers and he held onto my finger with the most amazing strength.

You see it's this that I am grateful for. Tygerberg with it's stinking rubbish heaps, disintegrating walls, rude staff, toilet paperless bathrooms, looong waits and befuddled student doctors, kept this little boy alive and will give him the ability to see. There will always be things to be thankful for, even in a pile of ashes.

,



OUCH!!

To give y'all an idea of the size of "Mr Pointy"  I've never had the courage to look at the needle so the nurse took a picture for me:)

I will probably regret this picture....

It has been one HELL of a day!. The doc (aka doc studying to be something specific) was a nice guy but he hurt me badly. Dude jabbed me 5 times before he eventually got the fluid to drain from my spine. And I felt  it acutely EACH time he put that needle into my spine and then moved it around and in and out. It feels like a continuous pinched nerve. But I actually think it was worse for my mother and it really didn't help when she started to freak out and get really pissy with the doctor. You really don't want to annoy someone who has a needle in your back. So most of the time I was distracted with trying to calm her down and reassure the doc. What a circus...

However this time I was impressed, the level of pain today was the same as when I had my first lp last year...but I handled it so much better. Last year I was wailing and hyperventilating, today I was very nervous before going in but during the procedure, despite the horrible pain, I was calm and managing quite well. Right now I'm hurting badly, it feels like someone has kicked me in the back and I'm really stiff and achy. In private hospitals they keep you over night when you've had a lumbar puncture and you can't move for six to eight hours. In a state hospital, they make you get up and walk after 15 minutes to make way for the next patient!.

The pressure was high this time- 28 ( normal pressure is 17) but not nearly as high as we thought it would be. I don't know what will happen now and won't until my next appointment.

Anyway I'm sore and my Mom has to help me up the stairs ( I'm a granny for a day!)

x

Night before hospital: have something special to share :)

I wasn't going to make a post today but I was on the Sky news website ( very rare for me) and I came across an article about Douglas H "Wheels" Wheelock- an American astronaut who has spent the past 5 months on the International Space Station. He has also been generous enough to entertain everyone on Twitter with dozens of stunning photographs he has taken from space. Take a look:

The United Kingdom at night- I can actually see where my beloved London is. Aurora Borealis in the distance.

Part of the Space Station and Aurora Borealis

The Isle of Juan de Nova off the coast of Africa- looks like a hat :)

Japan at night

If you are on twitter you can follow Douglas here

What always strikes me about photo's from outer space is just how incredibly small and insignificant we all are. From up where Douglas is you cannot see the poverty that millions of people face every day, you cannot see the the wars or any of our transgressions. All you can see is beauty. Space is a majestic mystery to me and it reminds me that there is something far bigger and complex than our minds are capable of understanding. If you read Douglas's tweets it is clear that he is a man who's life has been changed by witnessing something magnificent and beyond the scope of the human imagination or understanding.

We have to leave at 7am tomorrow to be at the hospital at 8am, hopefully the wait won't be to long so I can just get it over ( again they work on a first come, first serve basis). All day I have been preparing by drinking lots of water and resting as much as I can. I am proud that I resisted the urge to take tranquilizers for my nerves- I can't keep relying on that stuff.  But the consequence of that is that I have been eating everything in sight. It's not like I haven't done this before- this is my 5th lumbar puncture. But it sure as hell doesn't get any better and I haven't had one on a while. Besides...who wants a 7- inch needle shoved into their spine?. This may sound stupid but it has been really great having my wabbits. For some reason hugging something soft, fluffy and warm soothes an anxious heart.

I was thinking I probably won't find out if I need brain surgery until my next appointment- just what I need more suspense, it's like my very own Grey's Anatomy

Wish me luck folks:)

x

My day at the hospital: Got some bad news :(

Phew!. What a day this has been. Had an appointment with neurology today, so was up at the crack of dawn this morning for the hour’s drive and then the loooooong wait at the hospital. As I have mentioned before my BIH has just been getting worse and worse over the last 2 months. The headaches, nausea and fatigue have been pushing me to breaking point and it has started to affect my vision and hearing again which is serious.


Unfortunately when I did see a neurologist ( well doctor training to be a neurologist or psychiatrist- state health care!) the news was not was not what I expected and actually far worse than I was wanting to hear.

I was diagnosed with Benign Intercrainial Hypertension last year- this is a fairly uncommon condition in which excess cerebral fluid forms on the brain. No one knows what causes it and there is no cure. I had been sick for most of last year with debilitating headaches, nausea and fatigue. Eventually I started to go deaf and blind in one eye and that’s when I sought help. I was told, very gently that I may have a brain tumor and for 10 days my family and I prepared for the worst. Thankfully an MRI ruled out any tumors or lesions and after a lumbar puncture (spinal tap) I was diagnosed with BIH. I talk more about my diagnosis and treatment here

For the past six months it virtually disappeared and then suddenly decided to rear it’s ugly head again. I had thought when I went in today that the doc would just prescribe a lumbar puncture as usual and then I would go on my merry way. But the doctors were very concerned that my BIH has just come back, out of the blue and even more concerned that my sight is deteriorating. They have booked me for another lumbar puncture on Wednesday – the only way to tell if my intercranial hypertension has increased. If the hypertension is high then they will be referring me to a neurosurgeon for brain surgery. You can imagine how shocked we were.

To top off the day they sent me to opthomology to do a visual field test- this is to check my blind spots and I was presented with more bad news. I have two massive blind spots on the outside of both eyes and my optic nerves are swollen again. They still have to do more tests but unofficially it appears that I have started to go blind- this is the long term effect of BIH.

Right now none of this has been officially confirmed. I just have to wait until Wednesday. I don’t know what is worse when it comes to a health crisis- knowing the possibilities and letting your imagination run wild. Or being completely ignorant until you are hit with the cold hard truth.

I am calm and I am so thankful for that, but I have a feeling my mother is freaking out. This is mostly thanks to the idiot head of neurology telling her last year that surgery was the final option because of the risks. When she asked him what the risks were he casually said, “Death”. This was the same dumbo that told me I had to be “strong” to be sick in that hospital. And when I was told I couldn’t have children he “sympathized”, “It’s a shame, you’re such a pretty girl”. It’s a shame he has no proper beside manner!

Anyway, like I said none of this is definite and that horrible man was just presenting us with the worst case scenario. I have said before that I am thankful for the health care I get through the state: It's far from fancy, most times it's inconvenient and disorganised, but if you compare it to the health care or lack of that millions of other people face on the African continent, I actually am very lucky and I will continue to have faith in them ( I actually don't have a choice!). I most likely will have a freak out session at some stage but for now whatever the outcome my be- I am going to carry on with my life- continuing to fight my depression, GAD and daily battle with food, looking after my little girl (that's my next post), my mother and my wabbits and preparing for my future by living in the PRESENT.
 
Here are some pics that we took during the long wait. Blackberry + boredom = weird photo's
 
 

The "homely" looking hospital reception: The Cage!

Neurology waiting area, look closely...you might just see how bored everyone one is.

About the 5th time I read this magazine

 Finally home to my sweethearts :)

How dumb can you be?...oh earth PLEASE swallow me!!

Yeeeeah!!! SO confession time. And this is HARD!. And this post will be long- make some coffee!

This happened to me on Friday but I have honestly felt so stupid and so embarrassed and ( probably worried too) that it has taken me until today to finally pluck up the courage to share with you how I @#!%*** up!. Feel free to laugh because it is funny in some ways and feel free to be perplexed because and the other hand it made me realize how bad things are.

I had two appointments with Dr Shaw last week. One on Monday and one on Friday. This was all fine the week passed by quickly. I wrote in a post last week that I was struggling with some pain due to BIH and severe fatigue due to a combination of BIH and depression. So I was really out of it, the days seemed to run into one another. My mother was away concluding the sale of her business, my father was locked up in his office as always and my grandmother....well, you never go near my grandmother when you have a headache. I remember feeling relieved on "Wednesday" night, thankful that my appointment wasn't until the day after next.

BUT when my mom woke me up on Thursday I learned that....it was actually Friday. WTF? I was dumbfounded- what had happened to Thursday? Where had the week gone? HOW COULD IT BE FRIDAY?!!!. The most comical argument started between us ("no it isn't!"..."yes it is!"..."no it isn't!"..)  I had never been so confused in my life! What was worse is that my appointment was at 11:00...and it was 11:16 and a few seconds later my blackberry started ringing with Dr Shaws number on it. My mom told me to answer it,  I handed it to her and told her to answer it (cue next comical argument). Eventually I covered my head with my pillow and let it ring off. After much pleading with my mom she eventually went downstairs and phoned Dr. Shaw  to apologize and see if I could get a later appointment- yes I know I should have done this myself but I was to occupied with wanting to shoot myself.

In the end we couldn't get another appointment and Dr. Shaw landed up having a loooong conversation with my mom- who was mostly silent except for "hmm", "oh", "yes" and one "That's not good". And I knew that this was not going to go down very well. All my mom would tell me is that Dr. Shaw told her I was resisting and retreating.

When I got to the appointment yesterday (10 minutes late as usual). She opened the door for me and I knew that I was in for it. She told me she was very worried by what happened and gave me a stern talking to about what happened and that it showed her that I am not living in my life, that I am loosing touch with reality which meant that neither she or my church counsellors were helping me. The word "no" slipped out before I could stop myself. But then I told her that it wasn't anything that they were doing or weren't doing. It was actually me. I felt like crap! And I realised that I should have told her what I had written on this blog weeks ago when I first started therapy.

Basically I didn't have the strength to fight anymore, I was burnt out. I had gone so far down the road to suicide before I started therapy and had just taken a step back from it. Yet I feel to exhausted,  to crawl my way back along the road to recovery...yet again. There was also doubt about seeing Dr Shaw- originally my godfather hoped that six sessions would wrapped things up nicely. Both he and my mother hadn't realised that some people spend months....years in therapy before the are finally able to see some light. So there is always the threat that it will be discontinued....again- Dr Shaw is one of many psychologists that I have seen in my lifetime. And that threat really does affect how I feel about getting help and what I do with it. At first I felt I had to put everything I said in keywords to save time because I didn't know what session would be my last session. So I just haven't really taken it seriously yet.

I didn't have time to tell her all this (mostly because  we ran out of time). But the main topic of the whole session is what I could do to pull myself out of this- I didn't have a whole lot of ideas on that one, because I just don't know. But one thing that has been on my mind for a while is for me to start working  at a non- stressful job- to get me out of the house and in contact with people again. I entered the corporate world at 19 and worked my way up in London to a managerial position in human resources for a big company. I was working for a grocery distribution company in America when I had my breakdown. Since then I have been studying and doing menial jobs for my mother's company which she has now sold. Last year I was booked off any work because of my BIH and I decided to defer my studies this year because I was so ill.

So I have been out of the workforce for a while. I don't know if returning to work would be the wisest thing for a person who so very depressed. But if you spent one day in my house you would understand that it is probably the best thing to do. My house is a circus. I live with my mother, who has been supportive but is mostly unavailable because I am not her only problem. My grandmother who is 83 is in the advanced stages of Alzheimer's- a fall two months ago fractured her hip and she is now mostly bed ridden needing full time care- the energy she drains out of us all is the biggest problem we face. My Dad is bipolar but refuses treatment and also has heart disease. I need to get away!

One thing I worried about when I was talking about with Dr Shaw about getting a job is 1) my family needs me at home. However she pointed out that what was happening wasn't fair, I had been sick too and had mostly had to take care of myself. There is nothing more I can do for my grandmother. And if my sister and I constantly have to keep making sacrifices in the name of family issues we will never get anywhere, or have our own lives. 2) My family is very image conscious, they will really be concerned about what job I get and where and how it will "look" if someone I know sees me. I am thinking of a simple job in a coffee shop or something but if someone "sees" me the impression will be made that I have bombed out with life and the only success I could make was working in a coffee shop. I went to a well known private school and this makes it worse. Such are the petty circles we move in.

I've gone a little off topic. We also spoke about not letting my parent's attitude and words have any control over me, which is part of what I mention above. That will take a lot of work. Old habits will die hard...

Anyway I've got a huge amount of work to do and it all seems to be overwhelming. By Friday I have to come back to Dr. Shaw with a journal of how I am going to go about getting a job. She has also told me she will give me 15 minutes to be late before calling and rescheduling the appointment- which means a cancellation fee. This is more of a motivation to my mom who drives me to these appointments and has made me late nearly every single time. I guess you can call this a little wake up call even though I still feel like I am sitting in a heavy cloud.

Yesterday wasn't all that bad though, I went to my support group and it had a nice ending which I will post tomorrow.

Still feeling a little sheepish :/ and I'm STILL wondering where Thursday went.... :)

One glorious day....

*This is something I wrote about a week ago in a sudden "fervor". Unfortunately moving house and no internet has delayed me in posting it

There is something in the atmosphere, an air of excitement and opportunity, I’m not really sure what it is but I feel like I am sitting in a deep pool and I need to jump up out of the water and grab whatever it is before the waves of depression pull me back down into the murky waters where thoughts of pain and suicide will cloud my vision of whatever it was that was holding it’s hand out to me.

It could be just the last dying embers of a month of euphoria spent in the whirlwind of the Soccer World cup, a dream come true for me. That is definitely part of it. But the real source is what has been happening to me the last few days and resulted in an eventually epiphany last night.

I have never mentioned this in this blog because, God knows, there is enough to mention. And to talk about this subject as well as continuing to write about my daily battles with depression and anxiety would just be a bit over the top. But if I can take a break from those musings and turn the subject to something that is just as close to my heart.

A year ago I started to go blind- my sight had been rapidly deteriorating for a while, I thought it might have been the result of high blood sugar- a good enough reason to go to the doctor. But being uninsured, broke and under the dangerous premise that “it will go away on its own” I left it. Then over a period of a month my sight drastically decreased, I became deaf in one ear, was throwing up everything I ate and was in the most awful pain. This was something that wouldn’t just go away and I finally told my mother.

I saw an ophthalmologist who discovered my optic nerves were badly swollen. Having always been faithful with my research I already knew what this could mean before he gently told me I would need an MRI to see if there was a brain tumor. The other possibility was fluid on the brain. We had to wait a week for my MRI appointment. My mother and sister were devastated. My Dad hid in his office for the week. I was calm- I didn’t feel anything, except the slight and sick humor that God, having seen my soul die in my breakdown in America, had finally decided to put me out of my misery. How selfish it was thinking like that. Of course there were the usual thoughts of what legacy I would leave behind if I had to die in a few months.

The day of the test came and all the calm I had evaporated when I saw the tiny hole where my head would go to conduct an MRI. The nurse was kind enough to give me a “magic” injection. There was no tumor or lesions on my brain. My family was relieved but that was short lived because in the days that followed, I was diagnosed with Benign Intracranial Hypertension. It is a disease that causes a massive amount of fluid to collect on the brain. They don’t know what causes it and there is no cure. They can manage the symptoms with a drug called Diamox and….regular therapeutic lumbar punctures or spinal taps to drain the fluid off the brain. Not only that- we were told the damage to my eyesight and hearing could be permanent.

I have had four lumbar punctures in total. I will never forget my first one- a psychiatry student could not get the fluid t to drain landed and up poking my spinal column four times before someone took over afterwards I was in so much pain I could barely breathe. The drug Diamox- which is also used for altitude sickness had the most horrible side effects. I could sleep for 18 hours a day and when awake was nothing else but a zombie. I had constant pins and needles in my hands and feet, it alterated my taste- Coke tasted like brandy!!. And always, always there was the never ending pain sometimes dehumanizing. I was confined to my house and loneliness enveloped me like a blanket.


In April this year I told my doctors that I had volunteered for the 2010 Soccer World Cup. They had already advised me against working and again advised me that doing the World Cup would be crazy. It had been a long time since I felt so stubborn and determined and I decided I was going to volunteer- even if I had to do it sitting down…or lying down. We were trying some knew drug combinations and I had actually started feeling better so I decided to have faith that it was going to work. The World Cup was hard, exhausting but ABSOLUTELY amazing- it turned out to be one of the best things I’ve ever did. I have made friends and memories that will last a lifetime.


That ended nearly a month ago and last night was when I had my “epiphany”. I was cooking my Dad his birthday dinner and I started thinking about where I was this time last year. On my Dad’s birthday last year I had also cooked him a birthday dinner, but messed it up badly. It was right before my appointment with the ophthalmologist and I was at my worst. My sight was so bad I couldn’t see what I was doing. I couldn’t hear my grandmother calling for me. I was nauseous and I hurt so badly that I had to sit down every few minutes. But last night while again, cooking his birthday dinner, I realized that my sight was more than perfect, most of my hearing had been restored and I was absolutely pain free. I walked outside and saw the stars and I could hear the farm labourers laughing as they walked home for the night. I could see AND hear when the frying pan was burning

The last few days I had been reading bible stories from the Old Testament in my mother’s application bible. Most of these stories used to annoy me senseless in the infantile versions they were told in Sunday school. But the application bible has put them in a completely new light. Beautiful stories full of adventure, miracles and love that have been mysteriously renewed me and given me strength. If you read through this blog you’ll see that I’m a “Doubting Thomas” faith is a daily battle for me. I can go from believing God is there (but a big mystery), to believing that “something” is there but not sure what it is (agnostic ), to not believing in God or anything at all (atheist) and then back to believing again. I have tried to stop this cycle but I don’t know how.

Reading these stories I believe lead to my “light-bulb-Oprah” moment while standing at the stove. My light bulb moment: Without really realizing it, I had climbed a mountain- I was staring into the valley where I once was with a debilitating illness in front of me. An illness that nearly robbed me of my ability to see and hear. I hadn’t noticed because it happened so slowly.

I hope I am making sense here. But I am profoundly grateful for that experience. It has given me hope that over time, maybe without me even noticing it my battle with depression will be drawing to a close. Slowly everyday small steps are taken until one glorious day I’ll suddenly be staring into a valley that was my depression and realize that I am free.