Wednesday, September 10, 2008

How is it in this day of modern technology that we can do all these wonderful things and make new inventions to make life easier and all that, yet we haven't figured out how to be able to help people who need medications get them without having to sell their soul.

Here in australia a drug addict can go into a designated spot and get all the needles and paraphernalia they need to shoot up their drugs for free yet a diabetic has to pay for the exact same needles that deliver them the hormones they need to live. I know drug addiction is an illness but what makes them more specal that they can kill themselves for free while others have to pay for the privilege of living.
So many people i speak to talk about stretching out their medications as long as they can cause they cant afford to get a new prescription filled. As a consequence their quality of life is diminished cause they are living in pain or with destructive processes going on in their bodies.
Is it just me or do others find this so very morally wrong???? I know people have to make a living and it costs money to develop these drugs but when people become sick through no fault of their own cant someon cut them a break.
I am lucky i still work. I can afford my medications at the moment. However this is a life long thing. What will happen when i retire and dont have the income i have now? Will i have to weight up which meds i can and cant afford?
There should be a better solution to this. Its not right that people have to go without when others get things handed to them on a platter.

Monday, September 8, 2008

Still got germs

Man is my body throwing me challenges. If the chronically infected sinuses werent bad enough, i am now on 3 months of antibiotics, which means i need to be on the anti fungals to stop the candida coming back. To add insult to injury i got conjunctivitis. Of course it wasnt conjunctivitis that could be treated with eye drops. No it was viral so i just had to ride it out. Great!!!! sore puffy gritty eyes and another day off work. Bit hard to work when one can't see what one is doing. Sleeping was wonderful. CPAP mask on my nose and an icepck covered in a pillow case on my eyes. I was stunning. Now my eyes are starting to clear and my face is getting sore. I dont know if it is my TMJ or my parotid gland but something is tight and sore and i feel i have two little golf balls under my tongue. Sure why not!!!!!! lets see what sort of infection i can get out of this.

Its so hard not to feel down sometimes. I am so worried about my job, my finances, my relationship, my future. I have dreams. Yet at the same time when i feel like this i then fel guilty because there are so many people who are way worse off than me. I have a roof over my head, food on the table, i have nice things, i can get about, i got my license. Still i want my health. I dont want everything to be a trade off.
Anyway i will continue to moisturise the eyes, lubricate the mouth, wash out the sinuses and look after the gut. Rest when i can and look forward to those days when i can get out do do stuff.
I have got more of an appreciation of the good times and dont take them for granted these days.
I have learnt to be less frivolous with money too. Now when i want to make that impulsive spend i think "but what if i cant get to work and dont get paid?" maybe thats one of the lessons i needed to learn from all of this.

Tonight im sending out thoughts and prayers to some special people Denise, Lauren, jangy, pooh, janna, lostman, linda, scottie and her leaky roof, Doggie in chat, Solmom, mompain and all the others in my sjoggie family. May you all be well and i pray my biggest prayer that we can live life to the fullest and show this SOB who's boss. Lets kick some sjoggie ass.
I wont be beaten. You will not win. I'll play your game but i'll play it by my rules. Me and my girls (& boys) will triumph. You might wrack our bodies with pain and destruction but the spirit will not be broken. You will never get that!!!!!!!!!!!

Monday, August 25, 2008

The first blog

Well this is my first feeble little attempt. Where do i start? I have this connective tissue disease which the docs think is sjogren's. It all started last year when i just wasnt feeling right. Lots of fatigue so i thought i'd get something to pep me up in the form of a tonic called olive leaf extract. It is supposed to give you energy and all that. yeah well all i got was massive pain and more fatigue. I had recurrent ulcers and cold sores. feeling like crap was an understatement. i went to the doc and he gave me a referral for an immunologist. there was definately a lot of unexplained things happening. In the meantime i had only just returned to nursing and was trying to work and establish a career while feeling like death warmed up.Most of my patients were healthier than me.
Finally got into the specialist and the first thing he noticed was the dry mouth. He put me through a barrage of tests and my schirmer's test showed my eyes were as dry as an 80 year olds. I was 34 at the time. i had an autoimmune process happening and i also had severe sleep apnoea.
So i got a cpap machine and started sleeping better which was great. I learned not to take anything that will boost my immune system cause thats not great and generally got on with the process of living. I even had myself convnced that i didn't have this sjogren's thing or if i had it was gone now.

Fast track to Mid July 2008. I get a cold from work (hospitals have way too many sick people in them). I was rather unwelll and had a week of. Started feeling human again and went back to work. Four days later i was sick again. Feeling more sick this time and added a massive sinus infection to the mix. Another week off. Again started to feel human and went back to work. Four hours into my shift i started feeling stuffed up again my nose was blocking up i began feeling tired and by the end of the shift i could barely lift my legs one in front of the other to get home. During this time i had had 2 lots of antibiotics and getting no where. By this time i was thinking that i mght be havig issues with this sjogren's thing. I never get sick, certainly not sick like this so back off to the gp for a new refferal to the immunologist. I begged and pleaded with the immunologist office to get seen as i was getting desperate and knew i couldnt keep having time off work. Well to begin with i had a major candida overgrowth which was affecting my appetite,mouth and all that stuff so onto some heavy duty anti fungal medication, then some steroids to try and kill my immune system off a bit so i can recover and some other stuff to take long term to try and keep the inflammation at bay. Well this sjogren's thing is here and my journey has well and truly begun.
Fatigue, dryness of mouth, nose, eyes GI tract god knows where else. Pain. and very little understanding. This is an inisdious little syndrome that has the power to effect nearly every little aspect of your life. It can turn up anywhere and just when you think you have a handle on it it will throw you another curve ball.
It really sucks. I spent 3 years working my ass off to overcome childhood crap and its subsequent mental illness to become a confident productive member of society and for the first time enjoy my life. Now i have this hideous medical condition that is going to have a fair degree of say in how i live my life. Already i am having to look for a new job that is not so physically demanding and doesnt entail shift work. I am only 35 damn it. i have wanted to be a nurse since i was 10. Now i am having to look at not being able to work on the wards anymore.
My one saving grace is a great website this is my sjogrens family. They know, they understand and everyone supports each other. Its my cyber home.
Im glad i found this blog spot as it is going to be a good area to lay down some thoughts as i begin this journey and see where it takes me. There must be some lesson i need to learn out of this.