Well, Friday was an interesting learning experience for me. It started something like this...
0730: Get up and help get Madison and Charlotte ready for school, while having the morning coffee and crumpets, taking blood pressure, blood sugar levels etc. (BP was good, BSL was 14.5) Our mornings can get a little hectic, as any parent would attest...
0830: Girls departed for school. Kerry had a few things at TAFE so I sat down at the computer to do some work.
1145: Not feeling the best. Kerry had returned home. Had a funny feeling that I had forgotten something and asked her if I had taken my morning drugs, to which she replied that she didn't know. Well, given that it is now almost lunch and neither of us can recall whether I have or not, I decide to wait until the afternoon course as I'm not sure I should have an extra dose of Cyclophosphamide (if I did actually take the morning one).
1800: We sit down to the evening meal and I take my afternoon course of drugs. I am feeling quite out of sorts by this stage, the muscle cramps are becoming quite painful, and I am starting to develop a fever. Am also feeling quite drowsy at times. I have noticed that is one extra Cyclo tablet in the bottle and realise that I did in fact miss the morning dose.
2000: I've had enough and head for bed, hopefully to sleep... Under the covers is too hot, as I am sweating profusely and out of the covers I am shivering... There is no happy medium, so I take my temperature. It's 39.2c... Decide to take a few Paracetamol tablets to see if that helps bring it down.
2250: I'm still awake and in quite a bit of pain... The fever hasn't broken and then I realise that by missing the morning course of tablets, I have completely missed out on today's Prednisolone. Ooops. I head out and take the Pred that I missed and a few more Paracetamol before having another shower to cool me down...
0120: Still awake, but the fever is down to 37.6 now and the muscles seem to have quietened down a little. Sleep follows shortly after...
So... What did I learn today? Don't forget your drugs!!! In the next few days I plan to either get a medicine box where I can split my doses up by morning and afternoon sessions for each day of the week, or keep a notebook in my medicine box so I can write down when I have taken them, so that if I am not sure next time, I can just look...
Kerry seems to think the box is a good idea, as I am bound to get slack with the book and just not do it...
Anyway all is now back to what passes for normal in my life...
Cheers,
Jason...
Monday, August 31, 2009
Wednesday, August 26, 2009
Hello again...
After my initial posting yesterday I had a few emails and phone calls remarking that people were unable to post comments...
After reviewing the settings, I discovered you needed to be registered with one of a few social networks (google, yahoo, MSN etc.) and log in using that ID to post...
I have turned this OFF... Anyone should now be able to post...
You will need to have an ID and log in if you wish to follow the site and have it email you automatically when I make a new post... There is a button on the right hand side with a google logo and the word 'Follow' written on it. This will take you to a new browser where you can either log in OR create a new account with one of the associated groups...
There was also a need for you to word check your comment before posting, and I have disabled this too...
Cheers,
Jason...
After my initial posting yesterday I had a few emails and phone calls remarking that people were unable to post comments...
After reviewing the settings, I discovered you needed to be registered with one of a few social networks (google, yahoo, MSN etc.) and log in using that ID to post...
I have turned this OFF... Anyone should now be able to post...
You will need to have an ID and log in if you wish to follow the site and have it email you automatically when I make a new post... There is a button on the right hand side with a google logo and the word 'Follow' written on it. This will take you to a new browser where you can either log in OR create a new account with one of the associated groups...
There was also a need for you to word check your comment before posting, and I have disabled this too...
Cheers,
Jason...
Tuesday, August 25, 2009
Tuesday, August 25, 2009
Hi.
Well, as stated in the header, this is just me talking about how I am dealing with the disease and what I am really thinking from time to time.
I decided to post on blogger as it seems to be a little more private than, say, Facebook, and therefore hopefully keep the silly comments to a minimum.
Hopefully this isn't going to go too morbid or emo. That's really not me (as you should know if you are reading this) but if it does from time to time please forgive me and tell me to build a bridge...
Now, hmm, where to start... A little 'What is Antisynthetase Syndrome?' lesson perhaps...
(If you have already researched this, then please feel free to skip this part)...
Antisynthetase Syndrome is a rare, chronic autoimmune disease. The hallmark of the disorder is the presence of antibodies (specifically the anti-nuclear antibody known as Jo-1) which attack and destroy the aminoacyl-tRNA synthetases which play a vital role in protein synthesis. Essentially, these antibodies prevent the body from absorbing protein in any form, as well as causing a number of other related problems such as:
Myositis (muscular weakness, tenderness pain, atrophy and fibrosis).
Interstitial Lung Disease (diminished exercise tolerance, difficulty breathing at rest, pulmonary fibrosis and eventual acute respiratory failure).
Chronic Polyarthritis. (non erosive deformations of the joints, specifically in the hands, wrists, shoulders and knees due to calcification).
Pulmonary Hypertension (increased blood pressure in the artery connecting the heart and lungs)
Raynaud's Phenomenon (lack of sensation in the hands and feet due to restricted blood flow)
Photosensitive Rashes (speaks for itself)
Mechanic's Hands (build up and cracking of tissue on the fingers, similar to calluses)
It is unknown what triggers the body to first produce the Jo-1 antibody, however current thinking in my case is that it is a combination of environmental and genetic factors. Specifically, given that the disease is in some way related to Rheumatoid Arthritis indicates a genetic component, but environmental factors played a significant role in triggering.
Anyhow, as you no doubt know, I have been living with this since May 2007 and am being managed with varying success. At the current time, I am on 17.5mg of Prednisolone and 100mg of Cyclophosphamide a day, and monthly infusions of Ingragam P in an attempt to slow down progression. I am also on medication for high blood pressure, caused by the Prednisolone. Quinine to minimise the muscular cramping (not to sure if it actually helps) and a few other assorted drugs to rectify imbalances caused by the above medications.
Oh, also painkillers (specifically synthetic opiate based ones) and tranquillisers are a must in day to day life.
So, where does that leave me?
Well, at the moment, I suppose I am managing. I have good days and bad. I don't tend to walk much and given that we live in a two story house, I spend most of my time in the upstairs living area as the stairs have become somewhat of a major mission now. I haven't yet been medically restricted from driving, however I am starting to develop uncontrollable tremors so perhaps it is only a matter of time...
Other than that, all is well and I shall post here from time to time to let you all know how things are shaping up...
Cheers,
Jason.
Well, as stated in the header, this is just me talking about how I am dealing with the disease and what I am really thinking from time to time.
I decided to post on blogger as it seems to be a little more private than, say, Facebook, and therefore hopefully keep the silly comments to a minimum.
Hopefully this isn't going to go too morbid or emo. That's really not me (as you should know if you are reading this) but if it does from time to time please forgive me and tell me to build a bridge...
Now, hmm, where to start... A little 'What is Antisynthetase Syndrome?' lesson perhaps...
(If you have already researched this, then please feel free to skip this part)...
Antisynthetase Syndrome is a rare, chronic autoimmune disease. The hallmark of the disorder is the presence of antibodies (specifically the anti-nuclear antibody known as Jo-1) which attack and destroy the aminoacyl-tRNA synthetases which play a vital role in protein synthesis. Essentially, these antibodies prevent the body from absorbing protein in any form, as well as causing a number of other related problems such as:
Myositis (muscular weakness, tenderness pain, atrophy and fibrosis).
Interstitial Lung Disease (diminished exercise tolerance, difficulty breathing at rest, pulmonary fibrosis and eventual acute respiratory failure).
Chronic Polyarthritis. (non erosive deformations of the joints, specifically in the hands, wrists, shoulders and knees due to calcification).
Pulmonary Hypertension (increased blood pressure in the artery connecting the heart and lungs)
Raynaud's Phenomenon (lack of sensation in the hands and feet due to restricted blood flow)
Photosensitive Rashes (speaks for itself)
Mechanic's Hands (build up and cracking of tissue on the fingers, similar to calluses)
It is unknown what triggers the body to first produce the Jo-1 antibody, however current thinking in my case is that it is a combination of environmental and genetic factors. Specifically, given that the disease is in some way related to Rheumatoid Arthritis indicates a genetic component, but environmental factors played a significant role in triggering.
Anyhow, as you no doubt know, I have been living with this since May 2007 and am being managed with varying success. At the current time, I am on 17.5mg of Prednisolone and 100mg of Cyclophosphamide a day, and monthly infusions of Ingragam P in an attempt to slow down progression. I am also on medication for high blood pressure, caused by the Prednisolone. Quinine to minimise the muscular cramping (not to sure if it actually helps) and a few other assorted drugs to rectify imbalances caused by the above medications.
Oh, also painkillers (specifically synthetic opiate based ones) and tranquillisers are a must in day to day life.
So, where does that leave me?
Well, at the moment, I suppose I am managing. I have good days and bad. I don't tend to walk much and given that we live in a two story house, I spend most of my time in the upstairs living area as the stairs have become somewhat of a major mission now. I haven't yet been medically restricted from driving, however I am starting to develop uncontrollable tremors so perhaps it is only a matter of time...
Other than that, all is well and I shall post here from time to time to let you all know how things are shaping up...
Cheers,
Jason.
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