Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 once I got over my pride, and my mind-associated stigma I was able to shop, ride and enjoy myse Ron, I am so glad that you have allowed yourself to rise above pride. Even tho pride is both a blessing and a curse-so to speak, I think that for me, I still am fighting giving up some of the illusionary control I tell myself I have. It's good to see you posting. We've missed you. BTW- I took a lump sum settlement about 5 years ago from my employer (it was on a workcomp claim that was 17 yrs old)-- and I figured that I would have enough money to pay for my therapy and massage for probably 7 years or so. It did give us the ability to purchase our home (at least put the down payment), and then it paid for my massage for 3 years and a couple of years of therapy-- but honestly- that money is gone. And the bills of massage and therapy still go on. I don't know what we would have done if I hadn't gotten my long-term disability from the time I worked for the phone company. You also need to take into consideration that you will never be able to afford private health insurance, and even if you recovered suffiencently from the sarc to be able to work, that any job you accepted would have to be guaranteed enrollment health insurance-- so no small privately owned employment. Even your wife would be possibly passed over for promotion or employment if the company had to inherit you as one of the insured. These things happened to us. I know that hasselling with the constant stuff your employer's insurance comes up with is an ongoing stress, but I would say if you can handle it-- keep the monthly stipend. Love to you, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hey " Stasecase " ! I agree with the hot bath therapy. I have bath salts that soothes the mucles, arouse the senese and smoothe the body. I use one in particular that has camphor and eucalyptus in its ingredients. It helps with muscle soarness, open my pours, open my sinues and gives me a clean invigorating feeling! I can sit in the hot salt bath for and hour and fall asleep. Yes it truly does work. However, the only draw back is getting out of the bath tub. I use EXTREME CAUTION! I am always afraid of falling due to my weakness, poor balance and the soapy bath tub. So I don't bathe often, unless I am really zonked!!! I use take showers. But the standing can be equally exhausting as well. But after a hot aromatherapy bath, and a good catherization, I sleep like a baby! No middle of the night urinating, which is a pain in itself, especially when you are incontinent and have a neurogenic bladder. The pain I have is bilateral in my shoulders, hips, thighs, legs and sometimes ankles. And not to forget lumbar-sacral!!! This is the source of it all I truly believe. But you kbnow what, if I take a good hot salt-bath and drink a half of glass of red wine, I SLEEP LIKE A BEAR IN HIBERNATION! Here, here! Thanks for you concern and feedback. " Ronnie B " > Hi: > > Yes, unfortunately I suffer from the same leg issues. I was so alarmed in > the beginning I had my dr write a script for me to have a bone scan b/c I was > convinced I had bone cancer b/c the pain is so intense. I dont have bone cancer > thank god, but what my rheum. said is that I have the sarcoid granulomas in > the soft tissues of my legs, which is causing the pain. I do take pain > medication, but something that really helps is a warm bath with aveeno in it. The > coloidal oatmeal is a natural relaxant and it does wonders for the pain. Do you > have the pain in both your thighs?..thats where my pain is, in the upper > legs......I cant stay on my feet for long, or even walk the mall for very long > without having to get to the car to lay down. > > I hope you feel better. > > Stacie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Hey " Topdat " ! I can't top that! You are absolutely correct. I agree with you totally. Its all relative. First I lost my verility, then my balance, then my hearing, them my job, then my pride. And each time I thought to myself how can I be a man with my verility?! How can I survive in a hearing world and be deaf?! How can I take care of myself and my family without being employed?! But I have come to realize that its all relative. Even the wheelchair, the scooter or even blindness, GOD forbid. HE has equipped me and slowly prepared me for all that I must endure. HE truly is the " Source Of My Strength. " Now can anyone TOP THAT!!!!! Ron, in HIS Service, FOREVER AND EVER! Amen! Let all the members of the BODY say Amen, amen, amen! > Hey Ron, Sorry your having trouble with your legs, its a scarry thought, but > one which I understand totally. > I have had trouble with this horrible pain in my lower back and hips down > both legs since the onsought of my disease... I can only walk a few feet now > without the help of a quad cane.. and no more than about 30 ft with it...so > for my long walks from parking lots to doctors offices I have to either have > someone that will help hold on to me or.. take a scooter...which I can't get > out of my vehicle unless someone is with me...to get it out for me... I don > t like having to count on help as I am still young yet.. at 46 but I do > enjoy the liberty and freedom and the ability I get from not struggling as > much while trying to ambulate more than I know I can..comfortably... Its > your decision.. I was self concious at first.. but now.. Its just a way of > life... > > Good to see you posting, > > > > -- MY LEGS!!! > > Lately, I have been experiencing numbness, coldness, stiffness, > contractions, weakness and soreness in my legs. I can not stand for > long periods of time and can not walk very far without getting tired > and breaking out in a heavy sweat. > > Last week I used a scooter in the grocery store for the first time. > It was such a big help but I have always refused the idea/notion of > using them. > > However, I AM GROWING INCREASINGLY CONCERN ABOUT MY LEGS AND MY > MOBIILITY. > > Is anyone out their in " Sacr-World " that have experience these same > symptoms? Is this possibly a precursor to a wheel chair or a scooter? > > If so, any suggestions on how long it will be before I have to make > that transistion? > > Your experience and feedback is greatly appreciated. > > Ron > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Sharon, What is Erythema Nodosum? And how does it correlate with NS? I am too afraid of the possibilty of another inpatient treatment of mega steroids. Its been almost three years since I have had a treatment of steroid therapy. How long do you go in between treatments? To anyone else out their in NS-World, how long, on the average do you go in between treatments? I tell you, I don't know if I want to do another treatment. It takes too too too much out of me. I don't think I can handle the ups and downs of another week of Solumedrol 250 mgs, 3 times a day over a five day period. The smell of my body is awfully unbearable! The smell of the steroids are literally coming through my pours. The thrush, sleepless night, eating binges and emotional mood swings are just too much for me to bear. I HATE IT!!!! I HATE IT!!!! I DON'T KNOW IF I WILL EVER DO IT AGAIN! " Steroid Sick Ron " > Ron, the experiance I had was a reaction to two meds. > > I do have Erythema Nodosum of both legs and as of on the 5th of August I still have not gone into dormacy as I call it. I can lay dormant for at least a year then flare ano now it is still up and going strong. Nothing is phasing it. but I do know what it will take and I do not feel like doing it. 6 weeks of complete and absolute bed rest. > > As far as a precursor to a powrchair or scooter, as long as you can walk walk. Use the store scooters if you have to. > They are rather slow but hey they will get you there as long as the scooters in the stores are chrged up. > > Just be careful of when you are walking you do not fall. > > Sharon > > > > > From: " J. Blanchett " <rblanchett@s...> > > Date: Thu Aug 7, 4:53 PM > > To: Neurosarcoidosis > > Subject: MY LEGS!!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Ron, in most cases yes you are shown coutersy. then you get the inconsiderate nincompoops that don't acre and stop in front of you and then whap. You got them. Or the ones that make turns in front of you without even looking to go down a different aisle. the ones that park in the crossed lines for side mount ramps or lifts to go down and you are stuck until they come out from shopping. Best remedy for that one is praying there is a fine attached to the handicap parking sign and then you got them. Call 911 on the cell phone have them get the police there and have the vehicle towed while they are gone. Many a time has this been done. Oh, Yes, Owner's expense also. You may want to check with the doctor to get your own scooter or powerchair. Lifts are out of pocket for the vehicles. A brand new handicap accessible mini van lowered floor, and side ramp, kneely is roughly 50,000.00 and the mini van itself depending on the features is roughly 25 to 30,000.00 the rest is making it accessible. Stap lifts are cheaper until you cannot handle that any longer. Sharon > > Date: Sat Aug 9, 4:20 PM > To: Neurosarcoidosis > Subject: Re: MY LEGS!!! > > Hey Tracie, I concur totally! I have on many occasions refused to use the scooter and the cane. However, when my vertigo and vestibular problems were overwhelming I had to resort to using the cane. I don't mind it now. But now I have graduated to the scooter. I have only used it once, but it makes a tremendous difference in my shopping-fatigue. Normally when I get to the check out line I am drenched in sweat, exhausted and have to rest before I can go any further. Even though the good LORD always blesses me with a very short line. After checking out I have to rest again before I proceed to my Handicapp parking space. Then get in the car, turn on the air conditioner and rest for another 10-15 minutes with the cool air hitting my body! How refreshing. Now! With the scooter, I bypass most of this. So once I got over my pride, and my mind-associated stigma I was able to shop, ride and enjoy myself as well as the coutesies everyone extends you for being disabled. HA! Ron Thanks Friend. > Ron, > > I don't know if this is the precursor to the wheelchair or scooter phase of > this disease. I for one, choose the denial route right now. I keep thinking > that if I can hold out without needing the cane, or getting on the scooter at > the store, that I can keep myself strong enough to fight that off. > > I know many on the list have graduated to canes and gocarts. I also know > that some days, I am so weak that I really want to use the gocart in the store. > > You know that I keep you in my heart and prayers. > > Love to you dear friend, > Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 I was explained it was a for runnerof the types of Sarcoidosis I have now. Lung and skin but the verdict is still out as to where else it is. I am afraid it maybe the bone, they way I can break them. I do not have the NS that I know of. Sharon > > > Date: Sat Aug 9, 4:55 PM > To: Neurosarcoidosis > Subject: Re: MY LEGS!!! > > Sharon, What is Erythema Nodosum? And how does it correlate with NS? I am too afraid of the possibilty of another inpatient treatment of mega steroids. Its been almost three years since I have had a treatment of steroid therapy. How long do you go in between treatments? To anyone else out their in NS-World, how long, on the average do you go in between treatments? I tell you, I don't know if I want to do another treatment. It takes too too too much out of me. I don't think I can handle the ups and downs of another week of Solumedrol 250 mgs, 3 times a day over a five day period. The smell of my body is awfully unbearable! The smell of the steroids are literally coming through my pours. The thrush, sleepless night, eating binges and emotional mood swings are just too much for me to bear. I HATE IT!!!! I HATE IT!!!! I DON'T KNOW IF I WILL EVER DO IT AGAIN! " Steroid Sick Ron " > Ron, the experiance I had was a reaction to two meds. > > I do have Erythema Nodosum of both legs and as of on the 5th of August I still have not gone into dormacy as I call it. I can lay dormant for at least a year then flare ano now it is still up and going strong. Nothing is phasing it. but I do know what it will take and I do not feel like doing it. 6 weeks of complete and absolute bed rest. > > As far as a precursor to a powrchair or scooter, as long as you can walk walk. Use the store scooters if you have to. > They are rather slow but hey they will get you there as long as the scooters in the stores are chrged up. > > Just be careful of when you are walking you do not fall. > > Sharon > > > > > From: " J. Blanchett " <rblanchett@s...> > > Date: Thu Aug 7, 4:53 PM > > To: Neurosarcoidosis > > Subject: MY LEGS!!! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 I was explained it was a for runnerof the types of Sarcoidosis I have now. Lung and skin but the verdict is still out as to where else it is. I am afraid it maybe the bone, they way I can break them. I do not have the NS that I know of. Sharon > > > Date: Sat Aug 9, 4:55 PM > To: Neurosarcoidosis > Subject: Re: MY LEGS!!! > > Sharon, What is Erythema Nodosum? And how does it correlate with NS? I am too afraid of the possibilty of another inpatient treatment of mega steroids. Its been almost three years since I have had a treatment of steroid therapy. How long do you go in between treatments? To anyone else out their in NS-World, how long, on the average do you go in between treatments? I tell you, I don't know if I want to do another treatment. It takes too too too much out of me. I don't think I can handle the ups and downs of another week of Solumedrol 250 mgs, 3 times a day over a five day period. The smell of my body is awfully unbearable! The smell of the steroids are literally coming through my pours. The thrush, sleepless night, eating binges and emotional mood swings are just too much for me to bear. I HATE IT!!!! I HATE IT!!!! I DON'T KNOW IF I WILL EVER DO IT AGAIN! " Steroid Sick Ron " > Ron, the experiance I had was a reaction to two meds. > > I do have Erythema Nodosum of both legs and as of on the 5th of August I still have not gone into dormacy as I call it. I can lay dormant for at least a year then flare ano now it is still up and going strong. Nothing is phasing it. but I do know what it will take and I do not feel like doing it. 6 weeks of complete and absolute bed rest. > > As far as a precursor to a powrchair or scooter, as long as you can walk walk. Use the store scooters if you have to. > They are rather slow but hey they will get you there as long as the scooters in the stores are chrged up. > > Just be careful of when you are walking you do not fall. > > Sharon > > > > > From: " J. Blanchett " <rblanchett@s...> > > Date: Thu Aug 7, 4:53 PM > > To: Neurosarcoidosis > > Subject: MY LEGS!!! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 I was explained it was a for runnerof the types of Sarcoidosis I have now. Lung and skin but the verdict is still out as to where else it is. I am afraid it maybe the bone, they way I can break them. I do not have the NS that I know of. Sharon > > > Date: Sat Aug 9, 4:55 PM > To: Neurosarcoidosis > Subject: Re: MY LEGS!!! > > Sharon, What is Erythema Nodosum? And how does it correlate with NS? I am too afraid of the possibilty of another inpatient treatment of mega steroids. Its been almost three years since I have had a treatment of steroid therapy. How long do you go in between treatments? To anyone else out their in NS-World, how long, on the average do you go in between treatments? I tell you, I don't know if I want to do another treatment. It takes too too too much out of me. I don't think I can handle the ups and downs of another week of Solumedrol 250 mgs, 3 times a day over a five day period. The smell of my body is awfully unbearable! The smell of the steroids are literally coming through my pours. The thrush, sleepless night, eating binges and emotional mood swings are just too much for me to bear. I HATE IT!!!! I HATE IT!!!! I DON'T KNOW IF I WILL EVER DO IT AGAIN! " Steroid Sick Ron " > Ron, the experiance I had was a reaction to two meds. > > I do have Erythema Nodosum of both legs and as of on the 5th of August I still have not gone into dormacy as I call it. I can lay dormant for at least a year then flare ano now it is still up and going strong. Nothing is phasing it. but I do know what it will take and I do not feel like doing it. 6 weeks of complete and absolute bed rest. > > As far as a precursor to a powrchair or scooter, as long as you can walk walk. Use the store scooters if you have to. > They are rather slow but hey they will get you there as long as the scooters in the stores are chrged up. > > Just be careful of when you are walking you do not fall. > > Sharon > > > > > From: " J. Blanchett " <rblanchett@s...> > > Date: Thu Aug 7, 4:53 PM > > To: Neurosarcoidosis > > Subject: MY LEGS!!! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Ron,I'm right there with you friend. I hate it too, I am almost off, after being on 3 years, and am ready to be off. It's one of those Love/hate relationships, you love how it helps but hate what it does. But I am so with you on now wanting to do it again, try something else, there just has to be something else? Love ya, marla MY LEGS!!! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
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