Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Ok gang, I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. The challenge is this last week-- and I know I drive everyone nuts-- I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. Help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Tracie, I am sorry to hear that things are so bad for you right now! It sounds like you are feeling awful- I wish there was something I could do to help! This disease SUCKS (pardon my language- but I don't think that is too strong a word for what we have going on!). Can they move up your infusions by a week? It sounds like that last week of waiting is pure torture for you. I will keep you in my prayers- hopefully these next few days pass quickly for you and you will soon have relief! I am relatively new to this illness- 6 months in (diagnosed anyway). Wish I had more knowledge and info to share but YOU are the amazing wealth of info in this group! Take Care, and if I can do anything, let me know! Dawn > > Ok gang, > > I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. > Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. > There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. > I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. > The challenge is this last week-- and I know I drive everyone nuts-- > I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. > At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. > Help, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Hey Tracie I am here. I am having trouble with my computer. The fix it man is on his way. I am sorry to hear of your troubles. You are in my thoughts and prayers. There isn't much I can do but listen. I am not an knowledgeable as you or the others. I only know when to shut up and listen. No advise from this port. But go ahead and lean on me. Take care and enjoy your scooter. I love mine. Jackie Asking for help Ok gang, I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. The challenge is this last week-- and I know I drive everyone nuts-- I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. Help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Tracie, Dear lady I wish sorely that I could take all your pain away from you. But I know that I can not. So I will send my prayers your direction and pray the Lord will comfort you. It just irrates me when my friends and family are in trouble or pain and there is nothing I can do. But I promise to send prayful and loving thoughts your direction. Don't worry my aim is good use to be a sniper. Greg aka Krumdawg > > Ok gang, > > I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. > Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. > There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. > I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. > The challenge is this last week-- and I know I drive everyone nuts-- > I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. > At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. > Help, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Dawn, Greg, Jackie-- Thank you for your love and support. As you guys know, I'm 18 yrs into the sarc-- and Dawn-- SUCKOIDOSIS is a key term we use to describe this disease. Greg, I'm only 5'1" so aim low and make the shot count-- and if you won't shoot at me, then aim at all the docs (lol, I had typed cods) that don't take us seriously. Jackie, thank you for the prayers,, it's so hard to find the strength somedays, guess this is just one of those times. I've been trying to do the stuff I share with all of you, the meditation, quieting the mind and goiing within to find balance, "yada yada," and that's my "brainspeak". I'm having to fight Home Stores to make them pay the "free gas" program they had going when we bought a couch last Sept. They set it up so that you send in $100 in gas receipts a month for 20 months to get back a $25 "gift card" each month. Of course, the salesman decided not to explain all the work it would involve on our part- I'm sure he was tired of people walking out when they heard what needs to be done. We probably would have done so also. Anymore, when I have to do that kind of stuff, it starts off a part of me that I don't like. I'm generally pretty well grounded, but since the NS started 7 yrs ago, I can fly off the handle like a freight train coming straight at ya. Martha would not be doing her "it's a good thing" -- Greg, aim at here would ya. If ya have full time staff cleaning up after you, you cna be that perfect... Thanks guys, Tracie NS Co=owner/moderator Subject: Re: Asking for helpTo: Neurosarcoidosis Date: Monday, May 4, 2009, 12:26 PM Tracie,I am sorry to hear that things are so bad for you right now! It sounds like you are feeling awful- I wish there was something I could do to help! This disease SUCKS (pardon my language- but I don't think that is too strong a word for what we have going on!). Can they move up your infusions by a week? It sounds like that last week of waiting is pure torture for you. I will keep you in my prayers- hopefully these next few days pass quickly for you and you will soon have relief! I am relatively new to this illness- 6 months in (diagnosed anyway). Wish I had more knowledge and info to share but YOU are the amazing wealth of info in this group! Take Care, and if I can do anything, let me know!Dawn>> Ok gang,> > I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here.> Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. > There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. > I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. > The challenge is this last week-- and I know I drive everyone nuts-- > I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired.> At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. > Help,> Tracie> NS Co-owner/moderator> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Have you seen Martha's daughters show? Whatever Martha. It is a hoot and all that goes on is a put down to Martha. LMAO I don't like that one either. Take it easy and if ya need a mouthy broad to fend for ya let me know. Jim said I have gotten worse at the mouth since the suckmonster. Jackie Re: Asking for helpTo: Neurosarcoidosis Date: Monday, May 4, 2009, 12:26 PM Tracie,I am sorry to hear that things are so bad for you right now! It sounds like you are feeling awful- I wish there was something I could do to help! This disease SUCKS (pardon my language- but I don't think that is too strong a word for what we have going on!). Can they move up your infusions by a week? It sounds like that last week of waiting is pure torture for you. I will keep you in my prayers- hopefully these next few days pass quickly for you and you will soon have relief! I am relatively new to this illness- 6 months in (diagnosed anyway). Wish I had more knowledge and info to share but YOU are the amazing wealth of info in this group! Take Care, and if I can do anything, let me know!Dawn>> Ok gang,> > I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here.> Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. > There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. > I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. > The challenge is this last week-- and I know I drive everyone nuts-- > I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired.> At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. > Help,> Tracie> NS Co-owner/moderator> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Tracie, I didn't know you were in hyperdrive. But when I'm in a lot of pain I can be clueless. I honestly didn't know or couldn't read between the lines. I pray you get through all your paperwork and get the needed work done. The last few days have been horrible for pain and last night was bad. But I am here for you in spirit and want you to know you are in my thoughts. hugs S. Subject: Asking for helpTo: neurosarcoidosis Date: Monday, May 4, 2009, 6:41 PM Ok gang, I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. The challenge is this last week-- and I know I drive everyone nuts-- I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. Help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Tracie.. honey take some time for yourself.. the stress of the group is crazy enough to make you sick at times.. Do what you need to rest, cut the computer off and take a break.. I know how we all feel so alone and that sucks.. I wished we lived closer.. We could have a good time just talking... drinking water.. resting..till we could feel like a person again.. I hope your doctor knows what's happening with you.. if not please make it known to him.. Sending gentle hugs and kisses, P To: neurosarcoidosis Sent: Monday, May 4, 2009 1:41:39 PMSubject: Asking for help Ok gang, I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. The challenge is this last week-- and I know I drive everyone nuts-- I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. Help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 I had heard about it from friends, and i've not watched it - I"m afraid it would piss me off as well as M's show does-- but I do like her "it's a good thing" because it can be a good thing, or it can be a cutting edge smart ass remark-- and sometimes we need both. Her daughter has gone thru several years of invitro fertilization stuff to try to conceive so that M can be a grandma. (With an anonymous sperm donor dad) Now that would be something, and can we tell what the headlines would say.. a From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: Re: Asking for helpTo: Neurosarcoidosis@ yahoogroups. comDate: Monday, May 4, 2009, 12:26 PM Tracie,I am sorry to hear that things are so bad for you right now! It sounds like you are feeling awful- I wish there was something I could do to help! This disease SUCKS (pardon my language- but I don't think that is too strong a word for what we have going on!). Can they move up your infusions by a week? It sounds like that last week of waiting is pure torture for you. I will keep you in my prayers- hopefully these next few days pass quickly for you and you will soon have relief! I am relatively new to this illness- 6 months in (diagnosed anyway). Wish I had more knowledge and info to share but YOU are the amazing wealth of info in this group! Take Care, and if I can do anything, let me know!Dawn>> Ok gang,> > I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here.> Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. > There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. > I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. > The challenge is this last week-- and I know I drive everyone nuts-- > I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired.> At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. > Help,> Tracie> NS Co-owner/moderator> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 My neuro has cancelled the last 2 appts, so it will be Oct before for I see him if even that soon. He only does clinic one day a week, and generally runs 2-3 hrs behind, but if you aren't there before your appt time, they reschedule you. The rest of his week is in the hospital teaching the newbies, and I suspect that is what holds his interest. My reg docs along with the rheumi know about the heart stuff, and we've all been watching it closely, but I'm not a candidate for surgery-- too many other systems are involved, and too take me off the immunosupressants would be as detrimental as the surgery itself. I don't want to go thru transplants, that part I've made clear to them. The pericarditis turned out ot be an infection, and after the second rx of Levaquin it finally settled down, but it does seem to come back at a small roar during this time. I'm on the maximum dose of Remicade and the closest interval that they'll allow. I'm at 10mg/kg and every 28 days. As soon as I get it, within 24 hrs so much of the systemic inflammation and heart pain and upper bronchial pain deminishes, so I know it works-- it just doesn't last more than about 21-24 days. So I try to ride out the storm. I suspect it could be worse, and we all know how frustrated I get when I can't find answers. For me, the answer may be that this is how it's going to be-- and so I tell myself to be thankful. And yep, it's an elephant in the room-- and I have talked, but since he doesn't agree with my decision to not have transplants, we are at odds. So, what else is new. I really do need to figure my scanner out, so that I can send the gang a picture of kid embracing the elephant (it's on the cover of the book MODOC) and I love it! Subject: Re: Asking for helpTo: Neurosarcoidosis Date: Monday, May 4, 2009, 8:00 PM Tracie.. honey take some time for yourself.. the stress of the group is crazy enough to make you sick at times.. Do what you need to rest, cut the computer off and take a break.. I know how we all feel so alone and that sucks.. I wished we lived closer.. We could have a good time just talking... drinking water.. resting..till we could feel like a person again.. I hope your doctor knows what's happening with you.. if not please make it known to him.. Sending gentle hugs and kisses, P From: tracie feldhaus <tiodaat2001@ yahoo.com>To: neurosarcoidosis@ yahoogroups. comSent: Monday, May 4, 2009 1:41:39 PMSubject: Asking for help Ok gang, I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. The challenge is this last week-- and I know I drive everyone nuts-- I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. Help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Scheduling me out for a week every month might help-- I get my infusions every 28 days. I didn't get a lift, and I drive a 94 Toyota Corolla with 243,000 miles on it. I got the Pride Go-go Elite scooter, 4 wheel so I can take the dogs for a walk-- and the scooter folds up into the trunk. It breaks down into 5 small sections, and is really easy to put back together, the heaviest piece bieng only 33 lbs. That is the back wheel/motor section, the batteries weigh 16 lbs, and then the front and seat make up the rest. If I had too, I could unhook the steering arm also-- but that folds up again the bottom floor of the scooter-- right now it's cranberry red, and I'm changing it to blue tomorrow! One of those mood swing things. Transplants has been something my docs have mentioned, but I honestly don't want to go thru that-- they also believe it's a major issue as taking me off the immunosupressants would be really dangerous, and then to add them back in as well as add another to help with not rejecting the transplants-- I'm pretty well set on saying no. So, that elephant-- what shall we name it??? Subject: RE: Asking for helpTo: neurosarcoidosis Date: Monday, May 4, 2009, 7:27 PM Tracie, as usual I've been so focused on my own little world that I didn't realize how rough you're having it. Could we just basically "schedule" you off for those few days, so that no one (including YOU) expected anything from you? I know that I would need to step up & do my share & more, but I would really like to give it a try. Did you get a lift for your scooter? I love my scooter, especially for stuff like the State Fair; otherwise I couldn't go. But I don't have a van, so have to take the scooter apart, assemble two homemade folding ramps, & push the thing up into my trunk. Then fold up the ramps & put them in with the scooter. get to destination & reverse it all. I can actually complete the whole thing in 5-6 minutes, then take another 5 to catch my breath. Maybe when my car kicks the dust, I can buy a decent used van & get a lift. I would use the scooter more often if it wasn't such an ordeal. With all that you described, you didn't mention being afraid. I know all this stuff with your heart & lungs has to be incredibly scary. Several years ago, when you first mentioned possibly needing a heart/lung transplant if you couldn't get Remicade, you sounded like you would do it. Is this still a possibility, and have you talked with about your feelings about it now? Is this another big old elephant in the living room? Love, Rosie Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Mon, 4 May 2009 11:41:39 -0700Subject: Asking for help Ok gang, I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. The challenge is this last week-- and I know I drive everyone nuts-- I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. Help, Tracie NS Co-owner/moderator Hotmail® has ever-growing storage! Don’t worry about storage limits. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 Tracie, I'm so sorry you are not doing well, and I have not been any help either. I'm fighting depression, I guess it had to hit some time, but no excuse for not being there for you. I will be here more, I just don't want to depress anyone else, so will get that stiff upper lip and get the job done. I am praying for you, I know how much this disease sucks, I'm glad you got a scooter that should help you get around better, and reserve your energy, I knowwhen I use my wheelchair, I feel better, hurt way less, just pushing our bodies to do something they just no longer want to do wears us out, and you've been pushing yourself far too long. If you need to talk you have my number I'm here most mornings. Tomorrow I will get my hair done, that is a God send for me, do you do things like that, nails, pedicure, anything nice for you, it really does help me, and I was so sick the last time I went in, and they made me feel like a Queen, doing my hair and a pedicure at the same time, nice. I forgot to make my appointment though and called her today, I was so hoping she made me an appt. She didn't but said she could do me tomorrow, she knows how important it is! Maybe just get a nice pedicure for the summer! Hey what color is your scooter? I think I would get purple or pink, is that an option, do they come in colors? I think you are going to start feeling better when you start using it " As much as you can " , save your energy for more important things, you knowlike breathing, eating, and fun stuff, let the scooter do the walking, you know like 's White boots, These scooters were made for " walking " and that's just what they'll do, One of these days, this scooter is going to walk all over you, are you ready now, WELL start walking " (just be glad I am not really singing this to you) We love you Tracie and want to see you feeling better, sorry I've been such a bum. Although NO one can answer a question the way you do, No kidding, but I'll give it my best shot. Well Kid, start walking, and let me know what color your boots are? Love ya, call me if you need to, Marla Ok gang, I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. The challenge is this last week-- and I know I drive everyone nuts-- I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. Help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Marla, I will be calling. Probably not for a few days, but who knows. Right now my scooter is cranberry red, but it comes with changeable colors-- so I can do a rich blue, or silver. Or any combination of those. I'm thinking I'm a blue person usually, but this red is beautiful-- if not common... Tomorrow is the "in home" training, and I have no idea what time the guy will be here, so I'm getting up early and then I'll call and see when he's making the rounds up my way. Wed afternoon is infusion, but it's also my American Chronic Pain Assoc support group meeting, so I want to see if they can do thei infusion Thurs morning. I think I need the mtg. It is face to face, so we have anywhere from 3 to 15 people and we meet 2x a month. I've been teaching guided meditation and relaxation classes at these meetings, and Skot and I have been developing a dietary program with the help of some nutritionists and presenting on that issue. I've also been sharing on the vitamins and minerals and we're working on getting the local Naturopathic and Herbal Medicine doc-- he owns the local Health food store and has spent the last 30+ yrs studying herbs and vitamins and such, and is a real God-send to the communities- to do a presentation on anti-inflammatories. The meetings are only 2 hrs long, and many can't handle being there for that long, so we get the program stuff out of the way, and then try to do the meditation in the last hour, so that we have the last 30 minutes to share and discuss whatever issues come up. The group is in a huge growng process right now, but word is getting out that we have changed the format from a bitch and grip session to a more healing oriented program (which is what we wanted in the first place, but couldn't get anyone to step up and help) so the facilitator and I have put this together. It's a very good organization, and they do alot of advocacy for people in chronic pain. For me the challenge still lies in the process of "give them another pain pill" instead of teaching that there are other ways to control pain. Since pain meds are not an option that I choose to use, the least I can do is show others that there are ways and alternatives, and support them if they need the pills. For fun, I make some awesome jewelry-- mostly beading and wire wrap. I'm learning to make polymer clay beads and such-- but I think I prefer the beading. When we went to the coast, I picked up several hundred dollars in beads, and am trying to make up some bracelets and earrings and such. It is relaxing---- if I can see clearly. That seems to be another issue with trying to get the eyes and blood sugars under control. Oh well, the appt with the endo is coming up after 2 yrs of begging.... We'll get there- a step at a time, Love ya, Tracie Ok gang, I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. The challenge is this last week-- and I know I drive everyone nuts-- I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. Help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Dear Tracie, I am so sorry you are having to go through this.......like some of the others, I too have been wrapped up in my own problems and did not really "see" that you were struggling and needing help. I am so sorry for that........I should have seen it. I think you should take that last week off each month and I do mean TAKE IT OFF. Do NOT get involved with the group at all that week. If we need you, we know where to find you---- but the other mods and I can take care of things. I will step back up and do my share and we will be fine. Again, I do apologize for not seeing that you needed help. Please take some time and take care of yourself. Lots of hugs and well wishes, Darlene NS Co-Owner/Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Tracie, No worries girl the only thing I am aiming at you is my Prayers and Loving thoughts. It is a new weapon for me so I will aim very carefully. I will try to aim some prayers at your Docs to give them insight to treat you much better. You and your Mods have given some knowledge , Hope and Support that I will also be y'alls (Texan speak) Debt. Greg aka Krumdawg May Lord bless all with as mant Pain Free days as possible. > > > > Ok gang, > > > > I am really struggling. This is the last couple of days prior to my Remicade infusion, and I'm seeing a pattern here. > > Last week was like I was majorally manic all week long. One minute I was bouncing off the walls, then the next minute I was in tears. It was and continues to be the rollercoaster ride from hell. > > There were times when my breathing was so bad, that getting into the truck had me gasping for air. I also find that I'm having more chest pain around my heart-- but my heart is only slightly enlarged, and we know that 3 of the valves--the aorta is 46% stenosed, the tricuspid is not closing all the way, along with one other. > > I have found that this week prior to the next infusion is this way, and this has been the pattern for months now. As soon as I get the infusion, I'll be back to my normal self (isn't that an oxymoron) and doing fine for the following 3 wks. > > The challenge is this last week-- and I know I drive everyone nuts-- > > I did go out last Friday and purchased a scooter, and today I need to pull myself together and go down to Chico to take care of some paperwork. It'll do me good to get out, but damn I'm tired. > > At the same time that I've been firing off this last week, you all disappear. What's up? You can all ask for help, and yet when you see me in hyperdrive, you all run. Even our moderators and owners need support. We're dealing with this bugger also, including the crazy mind stuff that happens to all of us. > > Help, > > Tracie > > NS Co-owner/moderator > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2009 Report Share Posted May 6, 2009 wrote: "UGGGG if I ever get organized I'll never let it get like this again!" gee, if I had a nickel for every time I've said that, I could buy a flat-screen monitor. Of course, I've only been organized maybe once or twice in my life. Maybe I should give it up as a goal at this point. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver Insert movie times and more without leaving Hotmail®. See how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 My sister gave me a Blue Tooth thing for my phone. She told me not to lose it. LOL She knows me well. I went to get it 2 days ago and couldn't find it. Last night I searched the last pile and there it was! Under my unfolded clean laundry. Geez.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... "UGGGG if I ever get organized I'll never let it get like this again!" gee, if I had a nickel for every time I've said that, I could buy a flat-screen monitor. Of course, I've only been organized maybe once or twice in my life. Maybe I should give it up as a goal at this point. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver Insert movie times and more without leaving Hotmail®. See how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 I have a blue tooth. I love it. That way I don't have to look away while driving. I use a car that has been equipped with hand controls. Now you know I need my hands to drive, and break. Jackie RE: Asking for help My sister gave me a Blue Tooth thing for my phone. She told me not to lose it. LOL She knows me well. I went to get it 2 days ago and couldn't find it. Last night I searched the last pile and there it was! Under my unfolded clean laundry. Geez.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic (AT) yahoo (DOT) com "UGGGG if I ever get organized I'll never let it get like this again!" gee, if I had a nickel for every time I've said that, I could buy a flat-screen monitor. Of course, I've only been organized maybe once or twice in my life. Maybe I should give it up as a goal at this point. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver Insert movie times and more without leaving Hotmail®. See how. Quote Link to comment Share on other sites More sharing options...
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