sarcoidosis

all the great men had greater woman behind them apart from queen Elisabeth 1st and maggie thatcher

Oh...so it was Mrs Shakespear who wrote All those plays.....Mrs Churchill who saved the free-world from the jack-boot of Fascism....Mrs Brunel who built the bridges,ships etc.....Mrs Darwin who discovered the evolution of mankind.....Mrs Constable who painted The Haywayne........Mrs Whittle who invented the Jet Engine......Mrs Lennon who wrote and performed all those classic songs.........Mrs Bazzlejet who cleaned up London with the engineering fete of the Sewer system......Or..maybe they just washed up and did the ironing ?????? xxxxxxxxx;) :laugh: :laugh: :laugh:

Took my first 50 mg injection yesterday. Was really tired all afternoon. Had to work all night at the power plant and by 3am felt better. Tony,does enbrel make you tired on the day you dose? I am really praying that this will give me some relief. My sarcoidosis has limmited me to work. On my days off I recoup, sometimes a full day in bed maybe more, lots of pain and pain meds. I have given up most of my hobbies, my motorcycle and drum kit are collecting dust. I haven't been able to hunt, walking and climbing hills are impossible now. The yard work i used to enjoy is to painful now. I really do nothing on my days away from work. Understand that I am not feeling sorry for myself, I am just filling in the blanks of my disease. I have about 30% of my lung capacity left. The other 70% is fibrosis. I have a lot of damage to my aveola's and lung capalaries. I do not exchange O2 and CO2 efficiently. I was tested for PAH by right heart cath and my pressures were somewhat elevated but not what was consitered serious. I have regurgatation concerning 2 heart valves. My last CT in Jan. revealed that the right side of my heart is enlarged. My shortness of breath feels like I am smothering at times. I also have severe sleep apnea. When I relax while sleeping I shallow breath. Because of my lungs I don't get enough O2 so I wake up just enough to breath deeper. I am not conscious I am doing this. I woke up an average of 65 times an hour during my sleep studies and never went into a deep sleep phase pattern. All in all sarcoidosis has destroyed my life and will kill me outright or from a complication due to the disease. I won't quit, partially from my own stubbornness and for my family but also from the examples I see here and elsewhere of people facing hardships head on and striving to persevere. They set one hell of an example.

For some reason it posted twice so I edited it and cut it. If I could think of any good jokes.....I wonder if clowns taste funny?<br><br>Post edited by: ~mark~, at: 2008/05/24 12:55

Hi Mark my friens xxx As for the oily fish oils etc..Ive found them to take about three months to kick into the system..before feeling effect...So stick with it m8 xxxB) By the way..the xxxx are a trade mark of mine....Im not making any form sexual pass at you....although your a good looking guy...so Suzan tells me xxxx;)

mark, I was the only serverly disabled person in my family ,amongest my friends, and in work places. so I had no one to compare myself to. I belived that the blind,the bed ridden and ppl in wheelchairs where worse of than me . this site has made me aware of all the diffrent disablities that people have and how they are trying to cope with them. also there are many more sever disabliets than mine (so to all members sorry about my ignorence)

ignirence is bliss

(so is a shampoo induced hangover)

.hic&lt;

Mark..few points youve raised ,Ive been through.....I did get tired on injection days until my body started to get used to it (about three weeks so stick with it)
As for the shortness of breath,my condition is similar ..and you must remember that Enbril will reduce your resistance to infections.I picked up a cold and chest infection before Xmas..the cold went but the chest infection left me with lung water retention (felt as if I was suffocating when laying in bed and made me short of breath when walking)GP prescribed Water Dispersing tablets and they do help.
Stick with the injections,my friend,as you should feel the benefits soon xxx;)
By the way..your also an example of the strength we have....stay in the fight zone xxxxx;)<br><br>Post edited by: tonypark, at: 2008/05/25 13:54

one thing ive noticed with sarcoid...is that it seems to love those who lead a really full life......it seems to latch on to that zest for living and wants a part of it too.........this is a truly unmedical approach to it.........but i think its a valid observation.



it seems to draw so much energy from us....this has to be respected....it is really important to try to minimise stress (mental and physical) ........ and to get as much rest as possible, particularly when its active.

this often isnt easy to do......lifes day-to-day demands being what they are........but it should be seen as a priority.





on the issue of fighting infection, i found taking slow release Vit C...500mg daily works for me, and being a water soluble vitamin, it is not stored in the body,any excess being excreted in the urine.




mark, for yr sleep apnoae, are you using one of those machines that help you breath at night? .....they seem to be used a lot in the usa, certainly more common in usa households than here in the uk.




xx suzan xx....

Mark..Ive also got an inhaler (hope on a temp basis) had to use it on flight back from Rhodes when plane went above 30,000 feet .......

And Ducky...your just as much an inspiration to us xxxxx;) (I must stop takling those NICE tablets ) xxxxB)

And Ducky...your just as much an inspiration to us xxxxx;) (I must stop takling those NICE tablets ) xxxxB)[/quote]

:blush: that is nice
this aspirant will keep aspiring to inspirate you all;)
:blink: after all those aspires need asprins

See....say something nice and slung back in your face like a large turd . xxxxxxxxx:laugh: :laugh: :laugh: :laugh: