Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 hello all. some of you may not know who i am and for the veterans , some of you may not remember i am still apart of the group. this is nicole, aka carrots to some. as a reply to this post from teresa and an update on me, i have been in remission for almost two years now. as of this month i have been completely weened off pred which i have been taking since i was 15. my last flare up during my sophmore year in college was the worst. i was parylized on the right side of my body and had parkinsons tremors and spasms in my left arm along with nerve damage in my left shoulder (which is still there) during high school i was a full time athlete all year around. as you can imagine, my first few episodes of neuro sarc took a toll on my physically and i lost vision in one eye permanantly, occassionaly losing vision in my other eye as well. for most of my time with sarc, it was very difficult to remain active as i was exhausted all the time and had weight gain along with muscle weakening. from the end of my last flare up to now, i have made it my duty to dedicate one hour MINIMUM a day to working out. i do the treadmil for 20 min , abs and light lifting. i find that when i feel tingly or numb anywhere , a trip to the gym eases that almost right away. i also went out and purchased a pilates and yoga tape to do at home when i need to destress and relax. i understand everyone out there has different levels of pain and are at different stages with the illness but you also cannot let it defeat you. yes, we are sick. yes, it is painful and frustrating. yes, it has changed many aspects of your life and things arent as easy as they used to be. NO it does not control you, NO it does not have to be miserable. i challenge everyone, to start off slow with at least 5-10 min of stretching a day. you can do it on the floor, your bed, a chair ANYWHERE. while you are watching tv and a commercial comes on, stretch! go outside and walk around your block once a day. Sarc is apart of our lives and it is time we take control and learn to live with it not live for it. good luck and i pray everyone gives it an honest chance. i feel great, i have energy, i am happy and i feel blessed to have the motivation to continue taking matters into my own hands with my health. good luck and best wishes, nicole >From: tiodaat@... >Reply-To: Neurosarcoidosis >To: neurosarcoidosis >Subject: sarc and exercise >Date: Mon, 21 Feb 2005 23:27:51 EST > >I was reading tonight that several of you have attempted to " exercise " only >to end up being " laid out " by this frikking disease. I wanted to explain >what >happens. > >When we exercise, our bodies produce lactic acid. That acid builds up in >our >tissues, and creates additional inflammation. when we exercise, or get a >massage-- that acid is forced out of the tissues, and unless we drink large >amounts of water, or tea-- then the buildup starts to cycle. > >When I worked for an Internal Medicine MD-- he always stressed taking a >couple of Tums or (other antacid) prior to exercising. It really did make >a huge >difference in the amount of muscle/ligament pain you have. (Do be careful >that >your other meds will allow you to take an antacid with them) > >It is also important to remember that drinking a glass of water during and >after exercise is important-- but you really need to drink alot of water >each >and every day-- so that the normal toxins are washed out, and the induced >toxins >are flushed out. > >Hugs, >Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Good for you , Carrots!! Thanks for posting your upbeat message for everyone. It shows the good side of the illness for a change not the bad side. Hope everythings going well for you in school! Debbienicole santiago-rolon wrote: hello all. some of you may not know who i am and for the veterans , some of you may not remember i am still apart of the group. this is nicole, aka carrots to some. as a reply to this post from teresa and an update on me, i have been in remission for almost two years now. as of this month i have been completely weened off pred which i have been taking since i was 15. my last flare up during my sophmore year in college was the worst. i was parylized on the right side of my body and had parkinsons tremors and spasms in my left arm along with nerve damage in my left shoulder (which is still there)during high school i was a full time athlete all year around. as you can imagine, my first few episodes of neuro sarc took a toll on my physically and i lost vision in one eye permanantly, occassionaly losing vision in my other eye as well. for most of my time with sarc, it was very difficult to remain active as i was exhausted all the time and had weight gain along with muscle weakening. from the end of my last flare up to now, i have made it my duty to dedicate one hour MINIMUM a day to working out. i do the treadmil for 20 min , abs and light lifting. i find that when i feel tingly or numb anywhere , a trip to the gym eases that almost right away. i also went out and purchased a pilates and yoga tape to do at home when i need to destress and relax. i understand everyone out there has different levels of pain and are at different stages with the illness but you also cannot let it defeat you. yes, we are sick. yes, it is painful and frustrating. yes, it has changed many aspects of your life and things arent as easy as they used to be. NO it does not control you, NO it does not have to be miserable. i challenge everyone, to start off slow with at least 5-10 min of stretching a day. you can do it on the floor, your bed, a chair ANYWHERE. while you are watching tv and a commercial comes on, stretch! go outside and walk around your block once a day. Sarc is apart of our lives and it is time we take control and learn to live with it not live for it.good luck and i pray everyone gives it an honest chance. i feel great, i have energy, i am happy and i feel blessed to have the motivation to continue taking matters into my own hands with my health.good luck and best wishes,nicole>Reply-To: Neurosarcoidosis >To: neurosarcoidosis >Subject: sarc and exercise>Date: Mon, 21 Feb 2005 23:27:51 EST>>I was reading tonight that several of you have attempted to "exercise" only>to end up being "laid out" by this frikking disease. I wanted to explain >what>happens.>>When we exercise, our bodies produce lactic acid. That acid builds up in >our>tissues, and creates additional inflammation. when we exercise, or get a>massage-- that acid is forced out of the tissues, and unless we drink large>amounts of water, or tea-- then the buildup starts to cycle.>>When I worked for an Internal Medicine MD-- he always stressed taking a>couple of Tums or (other antacid) prior to exercising. It really did make >a huge>difference in the amount of muscle/ligament pain you have. (Do be careful >that>your other meds will allow you to take an antacid with them)>>It is also important to remember that drinking a glass of water during and>after exercise is important-- but you really need to drink alot of water >each>and every day-- so that the normal toxins are washed out, and the induced >toxins>are flushed out.>>Hugs,>Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 carrots! Hello love! Once again you have shown us the graciousness that you have developed in living with sarcoidosis. (For those of you who don't know Carrots-- she is the "baby" of the group. Her wisdom and maturity in dealing with it make her the "sage" in my opinion.) I really want to stress what you said -- We do have to learn to embrace this disease, live with it-- and in doing so-- we can have some , although changed, quality of life. Carrots, you are so very appreciated, Tracie Quote Link to comment Share on other sites More sharing options...
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