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Re:neurosarcoidosis 12 years 5 months ago #2794

  • tonypark
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Thanks for the back-handed compliments...and ,yes,I can confirm that Enbril changed my lifestyle dramatically.Your right about the people around you going through emotional pain....But funny as it might sound,it was a mature lady from the States who encased my AS etc in one word...I was on a Cruise in St Petersburg (thats in Russia.....you being a Yank wouldnt know that)...at the Summer Palace I had got detached from the group and hobbled back drained,sweaty and in massive pain.......I entered the lift,lady was with her husband and said...You know what youve got,dont you???? ..........Ready to respond with malice,I said..No,What ?????
Youve got a Challenge........It stopped me in my tracks and made me smile.....Yes,your right.....its my challenge..and no one has expressed it better.....
There are no Gold medals at the end of Our challenges,nor a round of applause....But my new American friend....You are with people who understand what your going through...and I,for one,am standing here and applauding you xxxxxxx;) ;)

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Re:neurosarcoidosis 12 years 5 months ago #2795

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As for the ill educated bit about us Europeans....think youll find we have a history going back to the Vikings,Romans,Normans,......In fact youll probably find your ancestors came from these parts xxx;) :P
Ive got a Tea-Caddie older than the USA xxxxxxB) :) :) :) :)

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Re:neurosarcoidosis 12 years 5 months ago #2798

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tonypark wrote:

.....As for the ill educated bit about us Europeans....think youll find we have a history going back to the Vikings,Romans,Normans,......)


you speak/write for yerself.

My lot are EASTERN European :)

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Re:neurosarcoidosis 12 years 5 months ago #2799

Oh my, I am going to like it here. I knew all about St. Petersburg, one of my missles is targeted there. The challange quote was a very nice bit of info to share, thank you. Of course, it did come from a yank so it does not surprise me. lol Ireland and Scottland hailed many of a kin to me. As well as Germany. So I am indeed indebted to Europeans for they did not eat my ancestor's thus enabling my existance.:evil: I need not the applause but appriciate it all the same. The understanding is what ones soul craves when in desparation stumbles and needs to collect themselves. Thank you. That means a lot to me.

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Re:neurosarcoidosis 12 years 5 months ago #2811

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Mark...my new founf friend...Its all from the heart xxxx;)
Will also remind you of just a few True Englishmen....Churchill....Shakespear....Nelson....Drake....Constable......Douglas Bader......Chaucer....Maggie Thatcher (Englishman through and through)......Cook.....Darwin.....Whittle....Daley....Brunel.....Cromwell......etc..etc...etc....B) B) B) B)

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Re:neurosarcoidosis 12 years 5 months ago #2812

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Blimey Posh....I never thought of you as a....RED xxxxx;) ;)

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Re:neurosarcoidosis 12 years 5 months ago #2813

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

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Re:neurosarcoidosis 12 years 5 months ago #2814

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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:

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Re:neurosarcoidosis 12 years 5 months ago #2862

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.

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Re:neurosarcoidosis 12 years 5 months ago #2863

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

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Re:neurosarcoidosis 12 years 5 months ago #2868

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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;) B) B)

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Re:neurosarcoidosis 12 years 5 months ago #2872

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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)

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