Well now, no wikipeadia..no medical site copy and pastes...just me and my info....what I have been through, what I know and feel, and have been through since September 2011, and my first hospital stay..... read it, dont read it....it's here if you really want to know....
Okay so September I get booked in to Howick Private Hospital, after a consultation with my NEW neurologist, Dr Fiona Maxwell (truly the best person to ever "happen" to me! A wonderful doctor!) after years and years of GP visits for the most awful headaches, more-than-should-be-UTI's...and a new symptom of severe memory issues and falling over MYSELF....yup all those Blonde jokes about tripping on a flat surface..or tripping UP the stairs....well that was me! GP gets all worried....books me an app with the next available Neuro (SCAREY!!!!) and writes the dreaded referral note...."possible MS...." Snot en trane all the way home, and a tough three week wait of absolutely NOTHING stronger than Panado (ie smarties!!) and KAKKING myself about this "possible MS"! And what an awful three weeks it was.....
Sooo fast forward 3 weeks and...into Howick Medi-Clinic, bed number one, and into an array of the most special SPA treatments you could imagine....acupuncture?? Try giant needle to the spine..the good ol' lumbar puncture! Indian head massage?? Try Magnetic Resonance Imaging (MRI) for a bit of brain manipulation... :)
Well my lumbar puncture was 90% painless....my doc is that good I TELL YOU!!! and with clear spinal fluid, and my excellent clinical diagnosis in the consult....MS is "taken off the list"......awesome...positive thoughts...and happiness......
but not for long.....
Drive myself on a "passout" down to MRI at Mediclinic PMB (said no to an ambo, i am not SICK!!!) the next morning, and go through all the jack-hammering and concrete crunching, whacky-bird calling noises of the machine, and then suddenly have some "dye" put into my existing IV port from Howick hospital...and back then the PMB MRI still had the periscope visor and you can see more and more doctors and technicians gaze at YOUR test screen... and THEN they wouldnt let me have that special little "paper insert" they ALWAYS put in with your xrays etc.... apparently was SUCH a backlog due to soooo many patients...when all they were trying to do was save the news for my doc to give me! I dont know why, but I knew, and again snot en trane all the way up the hill to bed number one, Howick Hospie!
WIthin 30mins of me being back my doctor came across from her rooms....dead giveaway......and tells me that the MS we took off the list is now the top of the list...and 99% the ONLY thing on the list! I cried for two days. My heart broke in the most painful and scarey way. I had talked myself into it NOT being MS, and now here it is, it is up there in my brain...I have lesions (scaring), like little "holes" on my brain....but TWO positives.... lesions INACTIVE....and NOT Cancer!!!???
Well sometimes I think atleast Cancer is a definite path, a definite recipe, a definite diagnosis, treatment and prognosis disease....MS is so many uncertainties, i dont knows, what ifs, and maybes, everyone is different, treatments is varying and only disease-modifying, not disease-fixing...and no one has ever been able to say their treatment has ensured there is no sign of MS in their bodies...be in full remission if i can call it that! People, we are faced with the possibilities of blindness, disabilties varying from the minor to the most severe, to severities I just cannot see myself be able to cope with, live with.... But still, yes be Thankful it wasnt, isn't Cancer!
40min of evoked potentials and EEG to check the nerves were all doing their thing, and then a 24hour stint of looking like a pregnant Christmas tree (wires all over stuck to your head like christmas lights and tinsel...and the battery pack and its housing in moon'bag thing around your tummy and across your chest!....aaarrgggg) And stuck on with the most horrid glue stuff that took a week to come out of my hair! Gross!! Showed no bad results! Yay!!
Five days of Solumedrol steroids (see types of MS and Treatments other note), that saw me put on 4kg in a week, and feel like SHIT, that the drive home after I was discharged saw me screaming at Robbie to pull over because I felt so fliping sick, and hot and queasy...and the traffic diversion old road was not helping in ANY way at all, delaying home by atleast another half hour!! The next week saw me have pain I have never felt in my life, like the middle of my bones were burning lava, and I would just sit in the bath and cry because even getting out of the bath I just could not do!! Wow, what a horrid experience, and one I vowed never to do again!!...
...only to do it again just after New Years, and my new Medical Aid year, so I could have another MRI. ALthough MS is a prescribed minimum benefit, demylenating disease was NOT, and until I met ALL the requirements, the MED AID would not and could not be made to recognise me as an MS patient...and my previous Sept MRI had KLAPPED my benefits at a whopping R9313 just for my BRAIN SCAN!!!
So anyway Jan 2012 and happy new year, welcome back to Howick Private.....but Bed four...how horrid...old manual mechanical bed, and right in doorway...yuk....but luckily I can organise and Sister Frost, my dear Sister Frost , immediately organised me a remote bed, and put a reserve on my BED ONE as soon as that old goat decided to go home...which awesomeness was that night!!! Home, and comfy and safe in number one, ready for round two...and hoping like hell the holes had healed themselves.....
Off to PMB again, again own car, NOT SICK for an AMBO!!! And MRI clanging and shreeking....and this time the paper thingy IN with the MRI sheets.....yay...meant not worse!!! R9313 and R4000 bucks later for 2 scans, brain and c-spine, No change, lesions still inactive, but still there...so back on some more fat-in-a-drip (solumedrol) and again the not so nice effects of that...but you do what you gotta do....
During December, I had been to the dentist complaining of the most excrutiating tooth pain again, and though they could see no hole, drilled filled and fixed it anyway...still no relief, in fact it kept getting worse. And after having my wisdoms ALL pulled IN THE CHAIR in 2010 in a desperate attempt to relieve the headaches, and the top molar next this one pulled in 2011 for similar.....I kinda thought hell I'm running out of teeth here I cant pull this one...the dentist must bloody fix it, I am NOT imagining this!!! And no matter what repairs done, and painkillers and antibiotics for the sinus infection that showed up on dental xray I chewed, there was no relief....so another evoked potentials EEG test was ordered and Whalaaaaa......my left nerve in my face.....my trigeminal nerve....has been damaged as part of my MS...and my nerve runs across, and very close to my teeth......thus the "phantom" tooth pain...and to this day I am YET to find anything that can truly help it...well apart from the pethadine and lekker hospital concoctions they give you which of course you CANNOT have at home! But even peth now, and that is one below Morphine from what I understand (that was my next step..scarey!) is only allowed to be given 6hrly and mine wears off, in terms of pain management after about an hour!!!
SO after being discharged in Jan, and definitely diagnosed with MS, our talk of hospital visits and next MRI's etc was hopefully going to be about every year only...or when I have a new symptom!! Cool! Awesome! I'm doing so well! Doctor says we caught it at best possible time, and I wasnt showing any protein in my spine, and had no tremors or tingles etc...........until.......
in March...i threw my phone across my bed in a sudden hand twitch...which OF COURSE I played down....until it became more consistent, and noticeable, and in both hands. Hand twitching, dropping or tossing phone, or losing grip on a book, losing grip on my hairdryer and whacking the ol' noggin like it doesnt have enough holes already...and back up to the Neuro for an immediate investigation!! :(
DIfferences were noted in my left and right sensory tests, and my name was put on the list for a bed... i said one or nothing (cheeky I know...BUT it is my home from home, my safe space!) but unfortunately hospital was soooooo busy that week, that there were no beds and my 72hr window was rapidly closing so I got booked into the new Oatlands facility (step-down/post op/psych/nursing care) also in Howick so I could get my solumedrol going! Now this place you pay R500 just to get in the door...CASH... :( and though it looks like a hotel inside, and about R2300 a night..excl the R500!.., it was too quiet, and I was miserable, and to keep me away from the OLD people who were really withery and noisy and spluttery I got put in opposite wing, really beautiful, i must say...but the damn Psych section.....so no damn TV....has opening windows for you to escape..but no TV...hmmmm....logic???? I missed MY sisters, and MY hospital so I transferred across the next morning as soon as a bed came open! Wasnt number one, but I was HOME!!! Happiness!!!
Was only in bed 18 for two nights...then guess where i moved to because they needed our ward for surgicals....woohoo you got it..number one! Truly home! Well, did my 5 days of steroids, put up with the yacking by Mrs Singh who told the SAME story over and over again, EVERY day, and I then stayed for a few days of observation and pain management and only left early (doc wanted longer) because MY BABY was playing his FIRST EVER rugby match the Saturday Morning, and I needed to be his mommy!!! I was in hospital for 8 days, and had a minimum of 32 injections...lost count...wlll have to check account...but my poor backside was so bruised and battered that the sisters didnt even know where I was going to put my next injection if I had stayed longer....shame they were sooooo good to me! I am so lucky!
Because of the tremors and new symptoms, Fiona was worried that the lesions had spread to my neck, so trekked back to PMB for yet another MRI, mom drove me...spoilsports wouldnt let me drive on steroids and pethadine!!! LOL. surprisingly medical aid said prescribed minimum benefits would PAY for scans (still waiting for account to prove that!!!) even though Jan MRI took all my benefits again!! And again the paper was in with the MRI scan....awesome....not bad news!.....NO lesions etc in neck or spine..at all...not even ONE!!! Yayness!!
Back to Howick Hospital for the remainder of my stay, surrounded by the most wonderful nursing staff, whom by now know me by name and by sight straight off the bat, and even greet me in the mall if they see me; the most amazing kitchen staff, and one in particular, my dear Portia, who always makes sure I have enough sugar, or juice even if it is not juice time...and sometimes an extra biscuit if I'm lucky!!!! The food was amazing, the sisters and nurses were angels (except two...Troll and Mrs Interferer who was driving everyone mad!), the hospital is such a peaceful and calm environment (even with the old ducks) and I feel safe and supported and secure, I feel home!!
My disease has taken so much away from me, in terms of future plans, and even my current abilities sometimes, but if it were not for my MS, I would never have met truly the most wonderful and brilliant doctor who actually gives a damn, and I would never have met the beautifully souled, special and caring sisters, "brother-to-be" (LOL Max!!!!), nurses, and carers that I have had the honour to meet lying in my holiday home, 1 Howick Private! Max, Sindi, Ursula, Nox, Nurse Mari, Abigail, Bridget, Portia, Sister Bosman, Fiona, Kristelle, Lynne, Sister Bleeker, Charmaine, Jackie, oh my word the list is too endless.... my life is the richer for having them in it!
And now I wait and see what happens, and when our paths will cross again, be it as a visit to the hospital as a pop in to say hello, or as a patient to be cared for.....
Okay so to cut this loooong winded story to a short summary, I have been diagnosed with relapsing-remitting Multiple Sclerosis, with trigeminal neuralgia. I have been to hospital three times since September 2011, with a total stay in hospital of about 3 and a bit weeks, fifteen days of that on steroids alone! Up to now I have been on epilepsy drugs, antidepressants of different kinds for different things, painkillers to the highest possible strength I can have at home, nerve drugs, sleeping tablets (or NOOOO sleep!!), antihistamines, you name it, I've probably had it, and to now nothing has been particularly effective, that if I can not get my trigeminal damage and pain under control next stop is JHB mediclinic for a special nerve "block", that may or may not work, for a short period or indefinitely!!! I have been waiting since leaving hospital in January for my long term (add to the already long list) MS disease modifying medication, the Rebif Interferon, which is supposed to delay, slow down the whole demylenation process, and keep the attacks at bay, or atleast few and far between with as little damage and disability as possible from an attack....but med aid being med aid is humming and hhaaahing, and delaying everything with bureaucratic bullshit, even though I meet THEIR requirements for MS!!! I guess its because it is R13000-00 (thirteen k...yup you read right!!) for twelve injections, and I need three per week on a mon, wed, and fri, to SELF INJECT (yikes!!!!) but anyway I wait patiently until I can wait patiently no more....they must know the shit storm that will hit them if I get worse while I am waiting patiently!!! They will regret the day they ever read my name!!!!
I will tell you no lies, this is the scariest thing I have ever faced in my life, because I cannot be in control, I cannot control it, and no one can give me an answer as to what, when, where and how...... I have the most amazing, talented doctor, and I put my entire faith and trust in her knowledge that she will keep me on the path to managing this disease until there is a CURE!!!!! I just have too much still to do you know?! But i will wait.......it will happen.
Please dont feel sorry for me, I have enough of those sneak-up-on-you-and-attack-you-sorry-for-yourself days for ALL of us! I do not write this for you to feel sorry for me. I write this as part of my "acceptance" healing, and though most days I'm ok, there are those where feeling sorry for myself and hiding in my room just have to be done. it is part of the process. But please dont YOU feel sorry for me. Just be my friend, if you want to be here.
Please dont judge me, for decisions I make, or try and guilt me into doing things. This is all hard enough, and comes with more than enough stress (which is bad for ms...!), I dont need to have to worry about extra unnecessary stress of not wanting to offend your suggestions or instructions, or being pumished for making my own decisions regarding my health, my life and my body. I have not lost my faculties, I am not clinically insane, or incapable of making legal decisions... I have MS, I'm not a delusional schizo! I am (almost) 30, qualifying me as an experienced adult, who is entitled to make her own decisions, her own mistakes, and her own achievements (small as they may be!). I am still a mom, and still a wife, I am still a daughter, and a sister, and a friend, I am still a human with human feelings and human hurts.. and I am still the stubborn sarcastic chick I've always been...maybe even more so now as a defence system....I am just all that with a side order of MS! Please dont tell me I am going to be a terrible cripple and move only a toe, or ask if I have wheelchair insurance (yup that is a question asked...), or tell me I just dont want to get better, or that I am negative, or that I brought this on myself......if you have nothing nice to say, nothing helpful to say, just dont say anything at all. I know the negatives, I know the possibilities, and the various end results, and I know sometimes things said are misunderstood because MS is so misunderstood, so undefined, so varying from person to person, but this MS is MY MS....and all I need is my friends to be my friends. If something bothers you, tell me. If you want to know something, ask me...but I am learning too so I cannot always guarantee an answer, or the right one, or one you will like!
I also know that you are all in my life for who I USED TO BE....and I have come to realise that I will most definitely NEVER be THAT Sam again, and if my MS, now, or as it progresses is too much for you to handle, then I will never hold against you ofor our friendship to end. Like I said in my status....sometimes I would really like to leave me, but unfortunately I have grown quite attached to me, so that's not gonna work for me. You as my friends, my loved ones, you have a choice, be here, or dont. and only you can make that choice!
I am scared, I am terrified of what is going to happen, and probably mostly because i just DON'T KNOW what is going to happen, or when....I could drop my plate, I could "trip" and faceplant in the mall, I could lose enough sight to not be allowed to drive, or lose mobility that sees me in a wheelchair...the list is endless, and from the minor of things to the severest of disabilities. I am terrified, I am scared, I am ok, and then I am not! I have ups and downs, and days where I cannot physically get out of bed, or spend days in tears. I will joke about my MS, because if I dont then I will break down and have to pick up the pieces. ANd then there are days that I just dont want to even hear the word MS!! My handful of pills, varying from about 8 to 16 (and more!!) sometimes is just the straw that breaks the camel's back, and after weeks of positivity and "i can do this", swings in the complete opposite direction of "God, why ME?", and "I can't live my life like this..."
This is going to take some getting used to, and I cannot always promise you will catch me on a good day, but I am still Sam, even if it is MS Sam (hey my name even has MS in it,....LOL!!) and all I ask is that if you wanna be here, just be my friend. If you dont want to talk about MS, that is cool....if you wanna know, ask......if you wanna just talk about the latest joke, or just wanna be on the other side of a bbm, or sms, or sometimes even just be with me in silence...I dont ask anything but that you BE MY FRIEND...like you have always been!!!
And to those special people who have given me the most amazing support in this last year when I needed it most....thank you...
When the night is at its darkest, that is when you can see the stars best....!
Now back to waiting patiently......for my treatment...for a cure......... it WILL come!
