Soul Dose

Everyday life happens, and for me everyday is a triple miracle... I've learned so much these past few months and am still learning about life, God, family, friends, love and mostly about myself. But today I'm talking about my mother, Mrs Nomusa Doreen Ntuli, the most amazing woman I know.

That's mom when she was little, she's still the most beautiful woman I know.

As you know now my mother got sick in 1980, she was in a coma for 3 months and woke up in need of one walking stick.... She soon gave birth to my sister Lindelwa and then me, she ended with my brother. The pregnancies weren't easy and as we grew up my mother really started getting sick. When I was around 13 she could barely walk with her cane and within months she was in a wheelchair.... She never complained ever, but we knew she wasn't just paralyzed, mom was sick and in a lot of pain. But my mother had a dream, she wanted to study and work one day, she enrolled at Unisa.

We used to tease mom because she did her degree at Unisa, she started the joke and it lasted throughout her degree studying. We used to say "Mom Unisa is for cowards, people who sneak up on education but full time studying is looking education straight in the eye and going for it". We'd laugh about it and go post her assignments when we were done laughing... Mom, Dad and my brother Mandi are the serial "laughers" in the family, tears stream and those capable even roll down on the floor.

It wasn't until I started studying at Unisa that I started to really appreciate the amount of work it takes to study at home and go for your exam at the chosen exam center. Sure the first year is so easy getting 100%  was a must and I did, all my first levels were passed with 100% and my family tells me I'd maybe study for two days out of the whole what 4 months and still pass. To me that meant one this: the illness hadn't damaged my head.

Doing second year is not so easy, in other words studying at Unisa is not a stroll in the park and third year oh boy Accounting makes you feel like you're studying Mandarin or something.....

So mom, I've said this so many times but you're my hero, you gave birth to three children, you raised us together with Gran and Mom Ndu, everyday you cooked, you cleaned, you washed, you ironed, you made sure we grew up as normal as possible and even though we saw you were sick and  still are, even though we saw your walking sticks and later your wheelchair you never complained, you sang the weirdest songs when you did your housework especially the dishes... And at night you'd take your books and study, you'd do your assignments and you finally got your degree, now I know your health has been even more poor but you have a job now, something you dreamed about for years and years, I'm so proud of you.

At her graduation, now she's doing her

honors, I'm so proud... That watch was

a graduation gift from me.

I consider myself blessed to have a mother so strong, a few weeks ago when my family thought I was dying because it was really bad my mother shouted and said to God "Please, please take the illness from my daughter and give it to me, let me suffer in her place, let me be on the ground bleeding like she is. please I want a normal life for her". I was on the floor at the time groaning but I heard her and started crying. God didn't do that and I thank him because mom has her own aches and pains but the thought, the thought hit me and I just started crying.... That's the woman my mother is, she had her children the hard way, she was already sick and so she's protective, she can't fall asleep when my sister gets off work at 11pm, she has to see her and my brother (he picks her up) enter the house and then sleep.

She went straight back to work

after a 6 month hospital stay, a real trouper.

If I hadn't grown up with this amazing woman my life would be different, her strength gives me strength and yes, she's SUPERWOMAN........ THANK YOU MOM

I’ve seen I have a life ahead of me,
Years of happiness and laughter.
I’ve felt the greatest touch,
The magical everlasting touch
And since that hour,
Even my heart is smiling.

I saw God in my dreams,
He showed himself in a form only
he knew I could relate to,
My dear deceased grandfather.
But no, that was him sent by God.
He was an instrument, which delivered the
right message without uttering a word.

After a dream like that one wonders.
Why do I ever get the sad down days?
Everyday, every hour, every minute.
God is right beside me, right here beside me
Protecting me during every shake
Covering my every fall and gentle.
Yes gentle telling me to hold on.

I have a new page that I'm fond of , the Friends Say... page, please check it out.

So today I woke up with my nephew next to me and I love that little guy so much I smiled with happiness, till 5 minutes later I started vomiting blood, pure blood with some water and my stomach soon join in the circus and gave me some problems. I knew then my appointment with the eye doctor was down the drain so I did what anyone would've done.

I got cleaned up, drank some water and listened to my nephew talk nonstop while pretending the pain was gone. He talked about the songs he knows, counting them and he found out he knows 26 songs and I found out I love him so much I listened to that for nearly two hours with a smile on my face, a hand on my stomach and an little nod here and there.

Right now I'm in bed waiting for Mom Ndu, she'll give me a bath and then I can try to sleep but since I have a bad case of insomnia I'll sleep for less than two hours.

The key to keeping my nephew quiet during those hours is to put all HOME ALONE movies in my laptop, make him sit down and watch, the downside is when he laughs the neighbors hear.

As for me I'm in a lot of pain, still wishing I could go seek help in America or Europe, I'm vomiting blood every now and then today, my shaking is extreme, I'm bruised all over because there isn't a wall I haven't gotten thrown at, I have a migraine and a swollen stomach.

That's all for now.

I'm smiling and believing, let's smile together and one day the whole world will smile and  believe, it starts with you.

                        Cheers And Stay Beautiful

(Oh I'm on a campaign to get Purplehatter to create something specific for me but I can't comment on his blog.)

Hello my friends

So here's the thing, I started souldose for one reason, okay maybe two. The first and most important was that I'm going through something strange, something that is cruel and has basically taken over my whole body, going through this thing made me wanna speak out and say to the world "whatever you're going through keep believing". My illness is making life hard for me but as I look at the people around me I realize it's even harder for them. So here I am, taking back my blog and in doing so showing my family and the world that I will never ever give up and I may have horrible days like these but from now on I'll control what happens on those days, I won't let them scare the people around me and I will keep the faith.

I won't lie, every hour is a struggle but then I start thinking this struggle is God's challenge, he's challenging my faith and he's giving me a task to go out there and tell the world to believe, tell the world that no matter how hard life is, giving up should be kicked out of each and every human being's vocabulary. The phrase "it's too hard" must not exist and everyone who is still breathing should be thankful and celebrate each breath.

I know there are no guarantees in life but I can guarantee that this will not rule my soul, yes it has forced me to stay in bed, yes I can't even say one word, yes I shake and shake uncontrollably 3 or 4 times every hours and yes I'm plagued with migraines more each day. This unknown and unexplainable illness has forced me into this life but it'll never take over my heart and will never ever take over my soul. My heart belongs to me, my family, my friends and Mr Man but my soul, my soul belongs to me and the man upstairs.

                                   Cheers And Stay Beautiful

Morning Everyone, due to Silindile Ntuli's illness taking a severe turn overnight Souldose will be put on hold for a while. She's a strong girl I'm sure she'll bounce back. In the meantime we might run a few personal messages she was asking her friends and family to write for the site but without her it won't be a bubbly and inspirational place only she made it to be. Get well soon Slindy, you're loved.

I'm thinking of getting a tattoo, nothing freaky or too out there but yes I really wanna get one but I don't know where to place it... I've thought about my neck but I don't want unnecessary extra pain, I've thought about below my belly button but my stomach is way too cute, I've thought about my arm but nah, so where can I put this baby?

I remember Jennifer Aniston's tattoo on FRIENDS and yeah that spot was good, but so is my wrist and that way I wouldn't have to but a watch............... My back? nah. Oh my leg, but no.

Okay I'm officially tattoo mad..... I have to make a decision, making a decision,, thinking, thinking, still thinking, alright done.

I'll tattoo the words 18 March 2004 - 27 April 2009 on my wrist.

I'm choosing this writing because 18 March is the day I bled, fell and got sick.... 27 April is the day I woke up remembering nothing that happened after falling.... So for me this is really important and I don;t like tattoos but this time I'm being a hypocrite.

Alright this is ridiculous, I'm a person, a human being and yes I'm sick but I'm still a person. I had a terrible experience at the dentist that left me with tears and I'm not even big on crying.

My brother and gran took me to a dentist I had never gone to before because I needed to extract the tooth right at the back. I had tried to live with it for over a month but the pain had gotten so bad it was affecting my temper... Maybe you don't know but I woke up with a teeth problem that will require R87 000 to fix or $11 000 roughly. I have a page about it but it's not online yet. I'll talk about this some other time, right now I'm talking about my dentist experience.

So my brother strapped me to my chair and I went in with gran, we gave them my history, told them my tests reveal I'm not allergic to anything, they got my medical aid, heard about my shaking and fainting. In other words they knew everything they needed to know, they also knew doctors can't diagnose my problem.

They started checking my teeth and one nurse had too much perfume, as someone who throws up even when she smells food I started throwing up. That stint passed but was soon followed by the shaking and I passed out. Gran helped me breathe again but as my eyes looked around I noticed the looks on everyone's faces, they were looking at me like I was a freak, an alien, something that had crawled out of the john that morning because they no longer wanted to touch me. As I looked at them I suddenly felt out of place and they saw on my papers that it was fine to extract, they knew the shaking had passed and wasn't gonna hit for some time but they chased me out of there.

My brother was upset and asked is she getting treated like this because of her condition, a condition she can't help? I was already crying and wanted to get in the car. We were in the reception area and all I could think of were the disgusted looks on the nurses and it made me feel like I was worth nothing.

That happened on a Tuesday, so I waited till Saturday for Mom Ndu to take me to the dentist she had taken me to in 2008 and the only reason I hadn't gone to her in the first place was because of my amnesia... When we got there she took out the tooth and she was so nice to me, she looked at me in a normal way and she's got such a good soul. She gave me her number and when I got home I sent a Thank You message and her reply was so sweet.

I'm fine with myself and I'm okay with my condition. Yes it's not what I'd chose for myself and it's not easy but I'm seriously okay with it... Still it hurts when I'm out in public and get looks like those, it hurts and I hope one day the world will look at an ill person (I don't like the word disabled) and see the soul within. Because I'm not my illness, no one is.

When I first woke up with my amnesia and started hearing stories about what used to happen when I got really really sick I thought no there's no way those things can happen to a person over 3 times every hour, that person would either be dead by now, or my brain would be mush or my family is exaggerating... But within an hour I started going through them again but thought nah it's a passing thing.

But these past few months are knocking me down like there's no tomorrow and the thing is I'm getting worse but there's nothing I can do about it. It's like I'm watching a meteor heading straight for my house but tired to the spot where it'll hit. Every month gets worse than the last and the shaking has gotten so violent and so frequent it leaves my whole body in excruciating pain, only to hit me just when the pain is starting to go down.

It's been tough to see myself going through the very thing my amnesia made me forget and my biggest worry is the shocking sensation right at the top of my head that just won't quit, yeah it comes with migraines but I'm used to them, the shocks are my main concern.

When this thing started getting out of hand I got kinda depressed and about a month ago I lashed out at Mr Man, it was stupid and I'm sorry honey, I know I've said it and it's in the past but saying it again is the right thing... I was really at a bad place and had a bad day but still I shouldn't have taken out my frustrations on you... I love you.

So I've realized that this illness is blowing up, I'm hardly able to blog but because I love it so much I came out with a plan that will keep me in blog-ville, you'll see in a few days my friends.

I've been asking God for an answer to my problem, asking him to heal me but I've realized there's a reason why this happened to me, God hears my prayers and if he didn't I'd be long gone by now, I know he hears me and he has a plan for me. I don't understand it at the moment but tonight instead of asking for the same thing I ask for every time I'm gonna tell him I'm ready for whatever he has planned for me, I'm ready to keep the faith and to stay positive still.

For a few days I was sad, really sad and wondering when will this be over, but now I'm okay and I'm just waking up each morning on the floor, laughing about it as soon as I'm breathing and living my day in this rollercoaster but it's mine and God has a plan behind all this...... And that, my friends, keep me waking up each day no matter how hard it is, burying my head in the covers works for one day in many months but it's not who I am or who I want this journey to turn me into, so I wake up, say a prayer, look at my goal list and let the day begin.

                              Bye For Now And Stay Beautiful...!!!

Tomorrow it's my birthday, I'm turning 26 but because of my amnesia it feels like I'm turning 21 but it's cool., I'm adjusting to it.

                                           Happy birthday to me

As you know my left side is totally paralyzed now I decided to find out was the paralysis a quick thing or an overtime thing, did we (my family and I) try to stop it and at what point did I loose control over my neck and had to be supported....... As for my speech it barely comes back and barely sound like words but then goes goes for months.

Mom said it was 2004 and I was already sick and walking slow with a cane and a wall sometimes but I was walking. Then one day we watched tv and I felt something moving down my left arm (I've written about this part before). I screamed thinking it was a spider but nope it was blood coming from my elbow like someone had open a little blood tap there. I felt no pain and when we finally got to the doctor he was just as confused because there was no cut or puncher, my elbow had no way of getting out that blood but it was doing it and continued for days.

After that my elbow got sensitive to everything and I had to wear a bandage. I still wear a bandage and from time to time it bleeds again for hours

Before we knew it my hand started folding in and the doctor we saw suggested I hold some little ball while I still can and he did some therapy on it but a few days later my hand was completely clenched and surprisingly, my whole leg was just as stiff and painful.

Then one afternoon I was with my mom, sister and brother when a bizarre but head spinning painful thing happened. I was on my bed standing when I fainted as usual. After they helped me out I looked at my shoulder and it was separate from my arm. The bones were separated by a big big space and if it weren't for the skin I wouldn't have looked.

The doctor said it's caused by my spasms and when I went to the doctor who specializes in this kind of stuff he said the same thing. So now my family has to push my arm back each time it gets loose, they just follow the crying voice.

I decided to write this post because we'll soon start physical therapy on the left side, some parts like the arm are really painful but I wanna get out of this bed or at least I wanna fail trying, so I gotta be a big girl and do thin...!!!

Sometimes in life no matter how positive you are there are days that make you feel so sad and so sick you can't even think straight, sadly those days have visited my home, built a small little tent and are roasting marshmallows and singing"Cumber ya" (Sorry I don't know how to write that but I've always liked the sound of it)............................ I've had a few nights where I silently cried but like everything else every time I wiped my face I knew I had to pull out of it.. So. I made a plan.

I woke up and thought alright since I seem to be getting worse by the day what can I do to gain some control back. My life has been spinning out of control and I hatted seeing myself paddling backwards... (Ha ha ha, I just thought of how the cartoons starts by running in one spot before the shoot out and run so fast I laugh even though I know it's coming)........ As I was thinking of my dilemma my brother came into my room, we had some words because well we're siblings but when he said something about my situation I said "That's it, put on your shoes brother because we're going outside this house"

We went looking for a Physical Therapist and boy did we find one. I've been working with her eversince and I love that Doctor Girl, well that's not her real name. But yes I found the perfect therapist and I'm so excited about it I've told just about anyone who can understand my weird talking and even weirder sign language.

First time I went to her I was upset because  my right arm (which is my only working arm) was also starting to have the same problems my left arm has, I couldn't lift a glass of water, it had shooting pains and sometimes shocking pains, it was barely working and I kept thinking "No no no no no no no, I can't lose both arms, no no how will I continue with my studies and my blogging"....... When I left her room I was thinking "This woman is a magician, look my fingers are already moving" And thanks to her and the stuff she gave me to support a lot of things on my body I can type again. She knows magic I tell you, meaning I have a lot of trust in her and I hope she can help. Our sessions are 3 times a week.

Now I'm trying to solve my eyes problem and once that's done I'll try to solve the hardest problem, my teeth... My teeth are a big problem but when this year started Mr Man said something thhat I choose to believe. He said "This is 2010 babe, all your dreams will be a reality"

My dreams are not too much and I'll write about then sooner than you can say knife... Thanks to the magic doctor.

                                          Bye And Stay Beautiful...!!!

I’ve wanted to write this post for some time but always got sidetracked to had such a bad day the laptop stayed far away, yeah those days are usually filled with a lot of vomiting and so much shaking and getting thrown off the bed  I protect my laptop by keeping it at a distance…. I love it too  much and I’ll tell you my laptop story after this one, after reading it you will agree I’m truly God’s favorite child.

What happens in my day? What do I eat? What do I drink? What medication  do I use? This post is about that, please don’t feel sorry for me after reading it, I’m fine, I’m okay and am making peace with things on a daily basis. It’s not an easy journey but like every card it has too be played and I’m playing it. I have the best support system that keeps growing each day. I write here and gain supportive people who are so kind and amazing… I’m thankful and grateful.

What Happens In My Day?

I cough and cough and shake till I calm down and realize oh wow I’m not on my bed I’m on the floor. Someone helps me back to the bed, they help me raise my pillows and stack them, they put towels at the bottom to support my back and them put little old me. Then I get my ice packs changed, I get my hot pressure bottle changed (I use it to keep a part of my stomach pressed and hot, otherwise you don’t wanna know), I stay in bed, maybe watch TV, maybe open the laptop or whatever comes to mind. Then few minutes later I start gasping for air, I gasp and gasp, then I get this head shock thing, I start shaking and maybe even foaming in the mouth and all this is happening while I’m conscious.

I keep shaking and getting hit square in the face by my out of control knee till maybe I fall off the bed and stop breathing all together, or I stop breathing while still on the bed…. After that I hear and see nothing, I feel nothing till I’m helped with oxygen and resume breathing again. Hat I do know is I start coughing and coughing till I start hearing and feeling pain, I feel this burning sensation in my chest and my head feels like it’s ready to explode. I wake up and they help straighten me back into my bed, when I take a few minutes to fully focus.

I make a few lousy jokes just to show them I’m fine, they go back to whatever they were doing and minutes later, maybe 30 minutes later it hits me again, other times it’s so bad I get blood in my mouth and other times my nose starts bleeding, but other times it isn’t so bad, I only shake and faint. This is a daily struggle and goes on non-stop till the next day and the next day and so on. My family take turns because there’s no way my not being able to sleep will keep everyone from sleeping.

What Do I Eat?/ What Do I Eat?

This is an excellent question, what do I eat? The answer is nothing. I’m sure you don’t buy that and believe me when I first woke up I didn’t buy it either and I’ve spent months trying to eat everything I can get my hands on, trying to drink every supplement but I can’t, I simply can’t……. How did this start? Well when I first got ill and it was getting serious I could eat, then it started the vomiting. I’d eat maybe porridge and wouldn’t be able to swallow it, nothing would go down my throat and at some point even water refused. It became a matter of “One second in the mouth and I’d start gagging like there was no tomorrow”. My family tells me there was a time where I went without anything in my stomach for 80 days or so, nothing at all would even go down and my nurse aunt decided to help me by giving my the hospital drips, or I believe they’re called I V’s in other countries.

She’s put me on  it maybe once a week till one day Mom Ndu tried to give me water like she had done everyday and on that day I was able to swallow. Then we started trying medication, pills, food and soft foods but still nothing, only water would go down in very small quantities and then after over a year II was able to  drink Tropika juice, the mango and peach flavor….. It’s been years and even though I still try daily I’m still not able to swallow anything except water and that juice.

What Medication Do I Take?

First we’ve tried supplements so I can have energy and stuff, we’ve tried vitamins and tried pain killers but I can’t take anything. This is the hardest thing  about  my life, daily being in agony and not being able to take even a pain killer. I can’t swallow these thing or anything else and when something tries to go down my throat I start vomiting and I don’t stop till I vomit blood or pass out… And the process isn’t a walk in the park, it is painful and exhausting, it leaves me feeling tired and in a lot of pain for hours.

My beautiful stranger introduced me to codeine phosphate and though I try to take it I still throw up.. I try to mix things in my juice but throw up, I try to crush pills but again throw up.

I know this might sound untrue but we have really tried it all, we’ve tried our best and it kills me when I hear my mother says something like “I wish I could absorb your illness and be the one suffering so you can have a normal life and go to school and work like people your age” or saying something like “If I were asked to die so you could get your life back I’d do it In an instant”

Things That Have Changed.

I used to be fine with smells, I have no problems but a few years ago I started getting negatively affected by them. An Example: If someone sprayed perfume in the house I start vomiting, if I’m out of the house and smell cigarette smoke I vomit and faint. Hospital smells are hard on me, body lotion smells, and for the big one, I can’t stand the smell of food so much that my family has started cooking in the outside room. If I smell food being cooked I gasp for air and vomit and end up with a nosebleed flat on the floor unable to breath…………… I know this sounds hard to believe but it’s all true…………. Any kind of smell is a no no for me and that makes life very hard on everyone around me. I hate this because it doesn’t only inconvenience me but all those around me and I feel guilty and I feel really bad.

This post was made because this is how I live, this is what my life has become and not writing this post would’ve meant not being entirely honest. I want this journey to be as open and as honest as possible.

I'm tired, I'm so tired and I feel like a thousand bulls were playing tag on my body and running around on it

But I'm just glad my phone allowed me to post today, I wrote the first few words and saved, what do you know it worked. So now I'm back to write what's been going on inside my brain

I hate feeling like this, being too sick to even spend time with people but there's nothing I can do. I have this guy friend and he's the one person outside my family who has been by my side from day one, he's a true angel and my very own hero and if I talked about him I'd have to make his own post because he's one hell of a friend.. Anyways I asked him 'Do you think I'll ever fully recover and his answer was 'Sure Of course yes' or something like that and it made me think.

Here was this person looking at me, seeing the pain I was in yet his belief was unchanged, maybe if you're in my situation you need people like him around you, people who will not see a sick person in front of them but people who'll always see a recovering person.

I've had some very unpleasant couple of days and I'm still in the middle of unpleasantness (That's not a word is it?) But what I love about my people is that they never feel sorry for me or treat me like an invalid, yes they look after me but to them I'm just Silindile or Sli as I'm called. They see how ill I am but because I handle it they also handle it, together we kick this illnesses butt and will keep doing it...... I hope I can remember how I did this post on this phone, maybe I'll post daily if I do.

As for my update here it is: The headache is normalizing back to what it's always like.. The nose bleeds are under control.. My leg spasms haven't been smacking me square in the face for the past two days and it's a relief, I hate being hit by my knee in the middle of my face but now that I write it down it's funny.. I'm able to drink water again after a 2 week difficulty.. I saw a doctor about the flashy thing in my eyes and he'll be giving me new glasses.. I made an EEG appointment but had to cancel when I heard how expensive it is, will make it again after my father gets his December work bonus. I feel guilty taking his bonus I really do.. I've spoken to my doctor about getting more allergy tests and he said he'll try to get in touch with Aurora Hospital, apparently they're the best and I googled them...... That's my update, hopefully I'll be feeling even better tomorrow and might come back to the website and maybe even chat.

Thank you so much for your support and kind words, I read them and my heart smiles because they're so sweet and I feel even more blessed. Thank you all very very much.

Usually I get help writing and posting here, those times are my not so great days kinda like these days, but today my cousin helped me set up and I’m doing the posting.

Truth is these days I’m not doing good, not doing good at all. This damn stupid illness decided to tighten it’s bite and sting a little more than it’s been stinging these last couple of weeks………….. I wanted to write about my typical day, I even got my trusted sidekick (My nephew) to take a few pictures and surprisingly the little man takes fantastic pictures, look  out Annie Leibovitz that’s all I’m gonna say… But that post will have to wait a little till I feel better and can type real posts.

I don’t know how long I’ll be feeling like this but I pray it won’t be too long because it really isn’t cool to feel like this, being too sick to even spend time with my loved ones.

I’m gonna miss you guys, this site has been very helpful to me and I’ve met amazing people. You’ve become not only helpful with your great advise, you’ve also become my friends and that’s very special to me.

I’ll see you when I feel better, this will be over quicker than you can say what? Knife of course.

These days my health has taken a dive and updating the site is not an easy thing, though I find it helpful to get my thoughts and feelings down, the actual simple process of switching on a laptop and typing is very hard at the moment, not to mention my eyes. They have this constant flashy thing going on and I don’t know how to explain it properly so please bear with me as I give it a shot…. My eyes get tired a lot quicker these days, then they start having a disturbing and blinding flash of some sort. It keeps flashing almost like the way a camera does when you’re taking a picture, except it’s in the eyes and making my vision blurred. Fortunately it comes and goes, I have an appointment with the eye dude this Friday.

Alright I got help writing this post, I wanted write down all the tests I’ve had and the doctors I’ve seen and am seeing. I got the info from my records and also from the doctors I’ve been seeing since I got the amnesia. This is the info that was right here in my boudoir, the other records are at the doctors.

I’ve had the following:

• Gastroscopy - because when I first got sick my stomach was the most problematic along with my head, they still are. It was done by a doctor at a private hospital call La Verna in Ladysmith, South Africa. The results came back only showing hunger but nothing out of the ordinary. * Flexible Sigmoidoscopy - it was also done to find out why my abdomen was so painful and I was forever constipated. 

• Lumber Punch - it was done because one General Practitioner suspected meningitis and transferred me to another private hospital in Pietermaritzburg. From what I heard my biggest complaint was how painful the thing is and I hated it… Results again came back clean and eventually they sent me home. 

• CAT Scan - a search for tumors and what not, another failure. 

• MRI Scan - It was done very late because we thought a cat scan was enough but turns out it’s not… It is expensive and the family was already broke because of a lot of my costs but they put money together and I got the test. It was done at St. Annes, a very good private hospital and again the results came back squeaky clean.
  

• HIV Test - I’ve had this test a number of times because each doctor wants to see for himself/herself before treating me…. Results always come back negative.

Alright, I should mention that I reached a point where I was tired of tests and needles and scans and drips, I wanted non anymore and for a long time I stayed at home and only went to a GP when I really needed to. But a lot of factors, family, will to live, seeing I was still alive, desire to watch my nephew grow up, and my beautiful stranger came into my life and I realized hey I wanna beat this thing, I wasn't done living yet.

I started going to specialists again and my first one was:

• Neurologist - well we first made a mistake and went to a neurosurgeon, he couldn’t help us so we booked an appointment and went to a neurologist. They thought I had some form of nervous system disorder. My seizures were the biggest problem, also the dizziness, vomiting, the eating problem, the involuntary jerking of my body especially my leg and just about everything........................................ The neurologist did a complete neurological evaluation and follow up, after all the testing the doctor said he couldn’t put me on any medication because the tests revealed nothing. So we hightailed our behinds out of there.
  

Then I developed heart pains and a few months ago I went to see a

• Cardiologist in St. Annes, I remember this visit because it happened in June. We got there and did all the necessary tests, he asked had I been seen by a neurologist because all my symptoms tell me that’ who I need to see and we said yes. But you know me and curiosity, I wanted to see the dude again to satisfy that “What If” at the back of my mind. The cardiologist finished his exam and immediately called the neurologist, within 30 minutes I had these sticky things all over my body and the nurse was shocking me and that part of my body would move, it was uncomfortable but also great fun, hahaha, ...........Seriously, as soon as I got used to it I started liking that tingle. Alright I know I’m a weirdo……………………. !!!

When everything was done and we finally got the results, I really believed he was gonna say well Silindile, you has such and such in your body but again he couldn't find the cause of all my problems.

To manage my day-to-day life I go to a General Practitioner when my pains get too much or when I develop feet sores of I have flu or my arm starts doing what it does best. I have a specific GP in every place I live in, II have one I see when with my grandma, another when I'm at my parent's house and another when I'm at Mom Ndu's place.

From the records I saw that I have been tested for poisoning, I tested for lead poisoning but I'm trying to get another test just to see for myself... Another test I'd like to repeat is the MRI but at the moment we can't afford it... The last one is the gastric one because my stomach is really behaving badly, the swelling and deflating, the one day up the next day down and painless is worrying me.

For now I have to switch off the computer and get some rest, I can barely see what I'm writing and I'm really sorry if what I've written makes no sense and is riddled with spelling mistakes.

My prayer these days "Lord please, let the doctors find something wrong with me, it doesn't matter what it is, how small or how big, reveal it because then I can get a chance to be cured"

I’ve wanted to write a new post since yesterday, I tried to write a new post 4 times since yesterday but my health these days not only made it hard, my eyes made it worse. So what’s going on?  

It’s no big deal, I have been feeling weaker and weaker, then of course I started swelling up. I hate it when that happens because I know it means I have a hard time and it just started. My face is looking a little funny really, all swollen and ugly but my stomach is even funnier. Whenever my nephew sees it like this he walks in and pats it while the words “you’re having a baby too mom” roll out of his mouth. I laugh and sometimes I nod my head just to humour him and boy does he get excited. That kid is a big ball of sweet.

Yesterday I saw a doctor, not one of the doctors I usually see but a new one this time. I figured  adding one more cannot do any harm. I took all my records and when we got to his rooms we couldn’t get in, they are upstairs and you have to climb long stairs to reach him. There’s no lift, so we sat and tried to map out our plan but the only thing that seemed logical was to turn and go see another doctor……. As we were getting ready to leave the person who was with me decided to go talk to the doctor, and within 5 minutes the doctor and his nurse came to see me in  the car. I wasn’t sold on the idea but the pains in my body were screaming “at least get an injection and go to bed.”

When the doctor started flipping though my records and doing a lot of nodding. I closed my eyes and prayed he finds a test we haven’t taken or notices something out of the ordinary, I prayed for him to pick up something other doctors missed and when he made notes I thought yes he found something, but I was wrong.

He suggested I get lifted into his rooms while my wheelchair followed, it was hard on the person who did the lifting but I‘m thankful…… The examination was the  usual and even though I was and am still swollen, even though my stomach looks dark and big, even though my head is pounding and my eyes can barely see, his results came back as clean as all my results always come back and I put my hand on my eyes  and hid my tears once again……………………….. I’m asking and was asking for an answer, a miracle, a little red flag to follow up on but again was given clean results. Maybe this will sound silly but I’d prefer to know I have this and this, at this point I’d take whatever I can get.

Then something totally new happened, I’ll post about it tomorrow because I’m  not doing so good right now.

Stay Beautiful………..Cheers

Last night was not a good night for me, I had a lot on my mind and pains on my body, not a good combination. I couldn't sleep till shortly after 3am and when I started feeling  sleepy I did  a little mental victory dance as I closed my eyes and drifted off to the land of sweet dreams (some funny, others scary, others weird... I enjoy weird ones).

I woke up soon after and saw that not only was on the floor but I was also wet. My brother was standing over me blowing air in my direction with a chopping board, mom was talking to dad on the phone, my sister who works nights this week was still at work, my gran was in the corner praying and II was on the floor thinking why am I wet...... He helped me till I was feeling okay, then he went to sit in the living room while gran helped e change my wet clothes. When we were done my brother picked me up and put me back to the bed and went to his room to go back to his own sweet dream land.

My cold packs needed to be change and my good hearted gran went to the kitchen to get new ones while mom told dad all was okay so he could get his own sleep. Let me tell you about the cold packs: As you know my left side is the most affected side and in the case of my leg it's really frustrating. It's like it's burning, the feeling deep inside feels like it's on fire and it is SO painful I hate it. The doctor checked and checked what could be causing it but we found nothing, I couldn't sleep at all and the leg was swelling up and needed to be cooled down, so we were given these cold/ice packs that we keep in the freezer and I take two, wrap them in  a thin towel to avoid frost bites and place them under my leg right in the knee area. I place a pillow first, then the Ice pack and then my legs, or rather the left leg on the pack, the right leg is a lot better. I keep the burning feeling controlled like thhat. It doesn't go away but it gets a lot better and I have been using this thing all day everyday since 2005.

After the packs were changed gran came back to tell me why I woke up wet. She said I had fallen asleep and next thing she saw me shaking uncontrollably and then got thrown off the bed and on to the floor where I continued shaking violently till she called my brother. He did what they always do but realized my pulse was barely there, I was foaming in the mouth by the time he got in my room and soon stopped breathing. He tried to wake me up, splashed water on me, gave me extra air and CPR till I started breathing again, that's when I soon opened my eyes and saw I was wet. It took some time to get me to  normal before he put me back to the bed.

When I heard all this I cried, I couldn't imagine how it's like for them to watch me stop breathing in front of their eyes, I also cried because it's a terrible thing that keeps happening to me and it's painful. I pray everyday for an answer, a little light. I thank God my gran was there when it happened and woke up my brother, I thank God for all of them.

Tonight my prayer is simply "Lord help me through this journey, show someone an answer, amen"

This journey I'm on is hard, it is very hard and there are a lot of down and too few ups, I get thrown down and sometimes get my hopes up only to come crashing down and breaking the ground that's under me.

I have the faith, an open heart, the desire, if I were looking for a man they'd refer to this as "She's out there, totally out there".  What I'm trying to say is these past few days I've been getting worse, first it prevented me from finishing my exams, then I thought no I can still try on  the 30th but no, I'm getting worse.

My problem is not the illness part, I'm used to that part now but the one part I hate is not being able to talk to my nephew, he comes into my room, hugs me and put his head on my tummy, he talks and asks his million questions but all I do is smile. I can't even write to the kid, he's 6 and can only read one words at this point.

That's him, just look at this face..................... Ah he makes everyday worth it.

I'm disappointed because I was doing a lot better. I felt it though, I started feeling dizzy and then the swelling up of the legs, the vomiting, the swelling up of my tummy, the shaking, all those things were saying "Hey you" and I paid attention, but without the proper diagnosis all  the attention paying isn't accurate.

Today may be hard, tomorrow may be dark, but one day the light will shine so bright it will blind my eyes... In a good way

So why did I say Soul Dose? It'd be so cool right now to come up with an explanation so brilliant it'd knock Einsteins socks right off, along with his little boots but in this case Einstein wit\ll have to hang on to his feet snuggles because the explanation in anything but brilliant.

I was in my room thinking and somewhere between being angry at my brother (a pain in the behind) and falling flat on my face from my bed I realized something, my soul was broken and I needed to fix it, try to fix it daily and not give up till I feel like the person I knew I was meant to feel like.

What had broken my soul you ask? Being sick of course. It had changed me and made me who it wanted me to be. I thought I was in charge but no I was my illness's bitch (excuse the language, I've been watching too much Samantha on The And The City DVD ). I love her.

All this happened back in April right after my first waking up........ I think you get me now, you know how you take medication for an illness. I decided to name this site soul dose because that day I decided to take medication for my soul. I decided to find out what happened to me, to find out how it happened to me, to cry when I ffelt like it, hide when I couldn't deal, scream when my voice came back, love like never before, laugh and sing and daily medicate my soul with the medicine of life.

My journey is hard especially these days but I'll write that on a new post now now.

I started this website so I can talk about how I got here, in I went from one day being a university Bcompt student to waking up in bed unable to move 6yrs later. As you know there's a lot I myself don't know, a lot I can't remember because of the amnesia and this isn't just about writing about how I got here, it's also about finding out along the way from people around me. I'm currently trying to persuade my father to buy me a scanner so I can write the words and post pictures that go with them. My family has been taking pictures since this started but unfortunately almost all of them are printouts and will have to be scanned into the computer........ I'm posting this entry by phone and something tells me it won't look the way I'm writing it, girlfriend here might end up with a post that has no paragraphs, I apologize. Remember we were talking about my coming of age celebration, I'll post the pictures later but I'd like to share what happened with you a little. I'm not feeling so good right now but I promise tomorrow I'll write all about it and from now on I'll write everyday and I'll write more about my illness because I've found out a lot more... I ask too much no wonder they say it's like I swallowed a radio and a tv.