08/January 2014
Added photos
of before this poison attacked my system and after the reactions from Botulism toxin!
Because MySpace decide to remove the blog portion from their site I found myself looking for a new avenue to continue writing about my struggle with Botulism toxin! On MySpace my blog detailing five years of writing, photos and backup documents of what was happening is now gone. The writing part is gone but the photos and documents remains in my photos part of MySpace! For over six month I was unable to access MySpace since they where making many changes to it and when I finally did I was disappointing in finding that they shed lots of their features that made them popular! Their blog was one of their main attraction and they manage to piss off a large audience that was using their blog either to promote themselves or a place to vent out! To me it was like a place where I felt I was being heard and was not judge! I had many follower and I hope they find me in my new home here!
I kept writing from time to time so that I would be able to return to MySpace and continued from where I left off but that ain't gonna happen and it seem like MySpace will not be adding the blog part on their site so here I am! I cannot start from the beginning but I did manage to do some blogging on here when I was unable to access MySpace. Many things has happen and with problem with my vision it will take some time to get it all down since I like to back up my words with proof and some of the information is missing and I don't have at this time!
2 May 2013
"We don't live forever eventually we die" With these words spoken and coming from my doctor, whom by the way reminded me it has been 5 years since I started reacting to Botox injections! It's hard to put in context what he meant! Lucky that I made it this far and should let go since I had a good run at it!
What brought that conversation on was my concern about the continuation of my weight loss which will be posted. Went down to 80 pounds and not moving past 84! I said that I no longer want to concentrate on thing we cannot change and work on area where we can. Every time my weight goes down the more concern I become! As a doctor I am sure he is well aware of this. I just want to remain vigilant because no one knows exactly what and how these reactions will affect or cause!
He assure me that it has been over 30 years now being cancer free and at this point it is rare that it would return. I had cancer twice and beat it but in reality no one knows for sure!I mention that there are thing like(disease and viruses) that are curable unlike fearing the unknown! thought got scattered and still stung by his response I forget to mention what has happened with my height! On MySpace blog I mention that my shoe size went from a size six down to a size five in shoes! That was not the only part that shrunk!
When I went for my bone density test the nurse take your weight and height, I found out my height is 4'8"and half! I was in shock cause I use to be 5'1" my back is not slouchy or bumpy which I would expect when you lose density in the bone! At my age we do loose some but not sure if this is normal and wanted to talk to my doctor about it but he had no answer for me! I assume they do that to compare to previous test and see how it can contribute to the change n the bone structure! When I mention this to my children i jokingly said "Hey doc you shrunk my mom" I looked at it this way shrinking and losing weight sorta bring the rest of my body in proportion which balance it out!
It's wonderful to wake up every morning and say "Wow I'm still here" It's a feeling I want to hold on to and embrace it each and every moment! Life is to be cherish and I love being here! I am grateful and thankful for!
Death has been knocking at my door many time now and somehow I manage to not open it! it's been touch and go but sooner or later that door will open widely and will have to answer the call but for now I will enjoy every day and not worry about tomorrow!
My condition is exasperating and frustration even in the medical field! That is why my conversation with my doctor seem to hit some snag sometime! I really don't blame him for feeling frustrated and at time overwhelm(that is when he grab the top of his head and rub it backward) by what I say! The only time he will see me now is when I need a requisition for a test or a reference to a specialist since he is the only one that can order these! What is the most frustrating part is that he won't call to let me know if the results of my test are in or not. I found myself calling his office to see if the result are in then I am told to see a different doctor to get my result and then I hit a snag again since the doctor cannot answer my question since he is not familiar with my case! Geezz!
I just want to work on thing that we have control over and the rest will take care of itself! Don't want my doctor to give up on me because I haven't giving up or lost hope! Maybe it's an intervention and I really don't need to be rescue but I need to stay real when it comes to these reactions! Some things are bigger and more complicated than I expected and I am fully aware that even with determination to combat these reaction I am not immune to what will eventually happen! I am just being realistic with my condition! Some conditions are more complicated to understand and I really feel I am learning so much as my symptoms goes through these reactions and changes. To other it might feel like a burden or a curse but for me it's a journey of learning how to survive and thrive everyday to do and be able to function to the best of my ability!
I ask my doctor to refer me back to a eye specialist I saw in the past when I first started reacting to Botox! My doctor sent 3 referral but for some reason the specialist whom I call during that time to check and see if my referral was received, I was told by his nurse that he would like to speak to my family physicians before seeing me! I ask my doctor to please call him and see why and what he was referring to and what was needed! I got a No since he said he has no time and ask his secretary to call him instead and as a result I never heard back and that was since July 2012! It's important that I see him since he is the one whom prescribe the lens which I can't wear for a period of time since my vision get distorted!Example if I look at the TV it's like a 3D effects and the screen which is flat does not look that way instead it's like a curb instead of straight!Same thing when I look at the wall. Or if I look at a picture it seem to be moving and then goes blurry which freak me out at the beginning' Sometime when I try to read or write I get double or blurry vision and the letter seem to be sideways!
A few month ago I notice a change in my doctor. I can't pinpoint te exact time but it got kinda strange. At the time I was complaining of my neck and had a hard time holding my head up! Also I had a bad rash that in turn turn into marks on both side of my thigh and along the bottom spine and always burn! As a result I have a hard time sitting for any length of time with that burning sensation! When it came time for the doctor to look at it I could not stay still and he was unable to diagnose it and I was embarrass for the way I behave and apologize! To me at that point I was ashamed of my appearance, my weigh! I should of not felt that way this is my doctor, I am sure he has seen worse than this rash!
He refer me for X-rays. After 3 weeks I call his office for my neck result and at that time I was told that my doctor don't want to see me by the nurse! My reaction was are you kidding me, how am I suppose to get my result. She said no it was no joke and my neck was fine! I said what do you mean fine can I please see someone since I have more question now! She book me with a different doctor! Then when I did see her(doctor) she gave me my result but was unable to answer my question since she is not familiar with my cae and refer me back to my doctor for answer!
I saw him after that and got more tests done and every time I had to call them back for my results within 2 or 3 weeks after the tests!No one was getting back to me with my result winch cause anxiety, not good in my case! I saw him on the 3rd of May 2013 and that is when that comment he made "We don't live forever, eventually we die!" Has he given up on me?
Writing is good therapy for me since it unload my thought and able to put things in perspective! It gets hard at time since I don't like repeating myself! The only thing I can do is write down my own experience and what I have learn from Botulism toxin. I know for certain that it spread through the body from the nerve in my gum. That is why it has affected my sense of smell and taste and make me so nauseated and my mouth gets very dry and sore. Resulting in dehydration and losing weight for sure and probably affecting my height and shoes size which I am not certain but its sure puzzling at this point of what connection it can have!
Who knows what my doctor meant by that comment since I have a habit to anylyse everything that has meaning!Does he know something I don't? Or maybe I am making too much out of a single comment! Either way it does and don't matter! Maybe I am getting too sensitive in my old age! I might be resilient but I have to admit I am not immune to what will happen next. We can't pick or choose our timing! Well some do and want help to die in dignity but it's not my prefer route at this point in time!
One way I can make you understand what is happening to me is like when you have a toothache. The gum throb, the tooth hurt and the pain is so bad that you want to get it check by a dentist or at the emergency in some cases! The tasted get very nasty like a bitter acidly chemical taste and burn my mouth and nose and very nauseated! Now imagine this affecting your whole mouth! I get numb and tingling and sometime is like I have a wind that goes over my eyes when my reaction are bad! Eyes burn get itchy and irritating! It affects every part of my body, it causes dehydration, visions problem double or blurry, shiver, chill, swelling, breathing, lung, heart and the most important part the stomach! Sometime my whole body or some part goes in dead weigh is the only way to describe this! Nerves get so stiff that any movement is painful! There is like a constant weight that is pressing against my heart and sometime feel like little stabbing and shoot right through me!at time my heart beat so hard and so fast it feel like it is ready to pop out of my chest! Some days I am very mobile and others can barely move and get up! That is how it feels like all the time and nauseated and the sense of smell and taste goes out of whack! The only opening that Botulism Toxin can and does spread through is the gum and teeth. I can't brush my teeth everyday because of the pain and the taste! To me brushing my teeth is important but unable to do it regularly because of theses reactions! It has affected the coloring of my teeth which to me is an indication and which make sense since it is the only opening of the nerve and in turn is how it is spread! My brain go mushy and can't think or speak straight!So many reactions and hard to explain!
Here are some of the reactions!
Also at time my body feel like it has been set on fire, the whole nerve system burn and the Ironic part is that my feet hands, nose, ears are cold and burning and itches while the sweat just poured down from everywhere and soak in it! And that is from sitting or when I sleep I wake up soak and wet and get severe chilled afterward! Other time my body will start to shake uncontrollably which mean my nerves system is completely out of balance! Another point my armpit constantly burn and itch and as a result I have barely any hair growing anymore since it sweat so much I can only assume that is a big plus, no need to shave that often lol
When the bitter taste hit hard I will try anything to try and chase it to no avail! I will try to eat sweet sometime it help sometime it doesn't and make it worse! Depend on the severity of my sense of smell and taste. Try to eat salty or sour and what still puzzle me is that it will taste sweet!
Went to my heart specialist on the 12th of Junes 2013 for my result from my tests that I add on the 10 Junes 2013, ECG and a Echo test. She has concern about the fluid around my heart. We discuss my family physician and relay to her the comment my doctor made and other concern I had. She suggest that I might be better looking for a new family doctor! I told her it would be hard for me to start over with someone new and that maybe I caught him on a bad day, or maybe I was!
She had concern with my weight loss and made a few requests to my doctor and one of them was to send me to a specialist and see if there is some way to force feed me which I think is call a G2 and try to stop this weigh from declining any further! That he did indeed do and referred me to a very good specialist that I have seen before!
On the 28 October I called my specialist office to cancel a colonoscopy that was schedule for November 5! at the time the nurse was not happy with my decision. Since it was short notice when I got the call for the test I was unable to secure a ride there and back from the hospital!I was book for a Gastroscopy for the 29 of November 2013 and ask if I can do them both at the same times. She said she would talk to the doctor and get back to me!
When she did call she left a message since I was not home at the time and said that the doctor agree for that date. I called her back on the 29 October to say thank you and appreciated that they where able to accommodate me for that day! My joy quickly turn into grief when the secretary told me that the reason it was scheduled so quickly is because it was an emergency and was urgent to get it done! Ouch! I told her I was not aware and wanted to speak to him before the procedure on the 29 November! She said there was no opening and that he would address my concern when I see him the day of the procedure!
My heart is pounding, my body shaking and my though are just racing away! "What now" I need to calm down and regain my composure! This don't sound to good but worrying too much before knowing the fact is going to worsen my condition! Breath in breath out time for meditation!
18 November 2013, The area around my heart feels very cold and is painful and burn! It feel like a constant pressure and very sensitive. I'm very tires and barely keep my eyes opened! The right side of my throat is swelled up and my mouth is burning tingling and my nose is frozen. The taste in my mouth is so nasty my tongue tingled and burns and feel like someone trying to pull and pinch! My body is dehydrating and my mouth is so dry to the point where it crack my skin and blisters! Very drowsy and swelling in my face is awful! Time for me to relax and try to moderate the rigidity of some part of my body! Hopefully when I wake up it will have subside or gotten worse Again it all depend on the severity of the reaction! It's like being numb but still feeling the pain!
Living this way is like having every nerve disease that is out there! I stop taking medicine years ago because it just make my reaction worse, like induce my nausea!But if necessary I will take it when nauseating is controllable!
I had to learn how to eat again cause at the beginning it was hard for me to deal with the taste in my mouth! I have search for a doctor that can help me with my diagnosis, but to date had no luck! I have called the US and let them know what was happening at the beginning with the Botox and the reaction I was facing and they gave me a reference case number which is 1002754US and also try to get help from our government a few time which I got no respond until my Liberal MP at the time brought it to their attention! Much later on Dr Sham made a formal application to let Health Canada know of my severe reactions!
Right now I am waiting for my family physician to call me an discuss the test that I had on the 26 November and the report from the specialist that I saw in March for my colonoscopy and my upper endoscopy and see where we go from there! Nothing yet!
I downloading photos and documents to back up my claim and hopefully people will think seriously about their health when it come to Botox it ain't as pretty as they think it is and the reactions are severe and long lasting! In my case it was used to relieve pain which in turn the ramification of that decision are bigger than I ever expected! Change my whole outlook on how I see thing and people! And one major point, it is irreversible and unable to be detected because it is injected directly in the nerves system! Feel good now or have severe consequence down the way!
One doctor that as been eluding justice I am still looking for him! My lawyer has been trying to locate him for 3 years so we can serve him, but he as manage to stay under the radar even though I manage to get some information on him and a location he is nowhere to be found and if we ask his whereabouts to his corporation they say it is Confidential information!
Please sign my petition
http://www.change.org/petitions/the-college-of-physicians-and-surgeons-of-ontario-and-canada-i-would-like-a-better-process-regarding-patients-complaints?share_id=mKYlVKijjJ&pe=pce
Have a great day:-)
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