Guest guest Posted May 4, 2009 Report Share Posted May 4, 2009 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 From: tiodaat2001@...Date: 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 5, 2009 Report Share Posted May 5, 2009 One thing you mention is that you are seeing a pattern. That, in itself can be helpful. Taking Remicade more frequently can be dangerous. It is a nasty drug. Can you plan around your crappy week? Try to schedule as little as possible for that week. Use your good weeks to prepare - food shop and prep (so you can still eat properly w/o the hassle), don't make appointments, etc... You aren't working at your best then, so leave as much for the other weeks. Sounds easier than it is. I've had to plan around my prednisone schedule. Took me a while to see the pattern, but now that I can, planning activities around our limitations can make less stress. And of course, if there is anything I can do, don't hesitate to ask. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 So, that elephant-- what shall we name it??? Well, Sparky is taken (and Sparky Jr.). How about Elwood? That's actually a little town near here with an interesting history. Used to be the center of KKK activity in Indiana. They were so insulated that there is still a lot of belief in inbreeding there. The town is trying hard to rehabilitate their image, but there are still of lot of Elwood jokes around. Or you could try Elmer. Lots of possibilities. 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 From: tiodaat@...Date: Mon, 4 May 2009 20:24:18 -0700Subject: RE: Asking for help 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??? From: Rose <mamadogrose (AT) hotmail (DOT) com>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. 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 5, 2009 Report Share Posted May 5, 2009 Tracie Please take some time for yourself and rest. You are always here for everyone, we will be ok. you are in my prayers Many Blessings A. 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. From: tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com>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 A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Greg-- and all-- THANK YOU!! Subject: Re: Asking for helpTo: Neurosarcoidosis Date: Tuesday, May 5, 2009, 7:06 AM 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 KrumdawgMay 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 5, 2009 Report Share Posted May 5, 2009 I always wondered what the meaning of that was. Thank you for letting us know. I had a Honda Shadow and a pomerainanp puppy they were both Shadow and the pup used to follow me thus shadowme. Oh will. Jackie Re: Asking for helpTo: Neurosarcoidosis Date: Tuesday, May 5, 2009, 7:48 AM One thing you mention is that you are seeing a pattern. That, in itself can be helpful. Taking Remicade more frequently can be dangerous. It is a nasty drug. Can you plan around your crappy week? Try to schedule as little as possible for that week. Use your good weeks to prepare - food shop and prep (so you can still eat properly w/o the hassle), don't make appointments, etc... You aren't working at your best then, so leave as much for the other weeks. Sounds easier than it is. I've had to plan around my prednisone schedule. Took me a while to see the pattern, but now that I can, planning activities around our limitations can make less stress. And of course, if there is anything I can do, don't hesitate to ask.- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Good explanation of Remicade. Unfortunately I am one of those whose immune systems went down the tubes at one point and I got Herpes Simplex 1 pneumonia, very nasty. Hence, my caution. My internist says " the disease is bad, but these meds will probably kill you. " Which is why she is always trying to get me on the minimum dose possible and still reduce my symptoms. One problem we are having is what the " correct " schedule is for someone with a disease like this. Very few doctors, here on the west coast of Canada are familiar with Remicade for sarcoidosis. It was a doctor in NYC that I went to see that originally recommended it. I now get infusions every 5 weeks and have had breakthrough symptoms, so we aren't spreading the treatments any further than that. As for white cell counts, is that the same as a sedimentation rate? Mine hasn't been " normal " since I became sick 9 years ago. One Day at a Time - Clever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 It amazes me that the docs are still so paranoid over the BRM's. It shows how little they know about them-- and how to use them. I do hope that they are adding Folic Acid to your daily medications, so that you don't develop pernicious anemia. CBC is complete blood count. WBC is the white blood cells, made up of Lymphocytes and neutrophils. This is the cell that your body sends out when it thinks it has an infection happening. ESR is E?? sedimentation rate. It is a signal for inflammation that is important for rheumatoid arthritis. Generally, our ESR rates are low, but the inflammmation is rampant, and most of us have really nasty, hardened lymph nodes. If you don't get enough fluids down, then these can get really impacted iwth normal toxins-- and then our immune system says send the warriors, more white cells, more lymphocytes, and since we aren't clearing them out, they build up and become more toxic, and more painful. The cycle has begun, and now the body thinks it needs to clear out the white cells, so it sends TNF-a and TNF-b cells. Each one clears out the one prior to it. But we don't clear them-- we just build one upon the next, and then they calcify (granulomas) and our immune system sees them as infection, so it sends more white cells, and more TNF-a and TNFb and here we go-- round and round. By suppressing the TNF-b, it helps break the cycle (which by the way is an inflammation cycle) think of when you cut a finger. You see the redness around the cut in the first hours, then it fades, and scabs over and heals. If you have sarc,many times that ends up scarring, and building upon itself-- Now, as far as the dosing Remicade. If you are having breakthrough periods of pain, then you try to move the infusion up to a day or two of breakthrough, or you increase the strength of the infusion. So if you are getting 5mg/kg of weight-- a 200# person would be getting about 450mg of Remicade per infusion. If you are 200# and getting a 10mg/kg dose, then you get 900 mg of Remicade. It is a hard call, you as the patient have to tell your doc what is happening. That way he can tweak the dose or interval. I am at maximum in both dosage and interval-- so there is now way for us to move it to 3wk intervals or push me to 1000 mg dose. I have found that as I increased the dosage, that I am more tired more of the time, but at least I'm generally not in pain. It is a crap shoot, and we may be the target.. What is happening to me is that the years-- including childhood, were ones of treat all the constant respiratory infections with prednisone or solu-medrol along with antibiotics. Now the valves in my heart are stenosing, that is they've turned to rocks. Stenosis is hardening. so, add the sarc and the muscle rigidity it causes, and I'm now faced with the real possiblity of heart/lung transplant, or death. Fortunately, it seems to be a slow process, but I do know what a heart attack is going to feel like. I'm not really a candidate for heart surgery, since the sarc is so systemic, and generally comes back in teh transplants-- and I'm a rare blood type-- so finding that donor is harder also. However, since all these issues are long shots, I do think I'll play the lottery-- I have a better chance of winning it than being this sick. Take care, Tracie NS Co-owner/moderator Subject: Re: Asking for helpTo: Neurosarcoidosis Date: Tuesday, May 5, 2009, 4:09 PM Good explanation of Remicade. Unfortunately I am one of those whose immune systems went down the tubes at one point and I got Herpes Simplex 1 pneumonia, very nasty. Hence, my caution. My internist says "the disease is bad, but these meds will probably kill you." Which is why she is always trying to get me on the minimum dose possible and still reduce my symptoms. One problem we are having is what the "correct" schedule is for someone with a disease like this. Very few doctors, here on the west coast of Canada are familiar with Remicade for sarcoidosis. It was a doctor in NYC that I went to see that originally recommended it. I now get infusions every 5 weeks and have had breakthrough symptoms, so we aren't spreading the treatments any further than that.As for white cell counts, is that the same as a sedimentation rate? Mine hasn't been "normal" since I became sick 9 years ago. One Day at a Time - Clever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 , I wanted to encourage you on the school thing. I'm amazed at how much & how well you've done so far, and I'm betting on you to get back to it soon. You probably will have to take it a little slower (slow & steady like the tortoise!), which will be very hard to accept. I'm just a few credits shy of a bachelor's degree in business. I started an accelerated program when the fatigue, etc. started & I knew that something was wrong. I figured when I couldn't practice midwifery anymore I could use that business degree. Well, for the first 18 mos. I did great--Dean's list, loved the classes--then the brain fog & fatigue, along with neuropathy & other symptoms just did me in. I took what I thought would be a semester off, but never have gone back. That's when my teen granddaughter that lived with me really got out of control, one thing after another, last year my mom's Alzheimer's worsening until she died, this year more kids & grandkids with problems. So I really believe that God has other plans for me right now. If & when the time comes & I am able to concentrate enough, I'll complete that degree. I've stayed in touch with the program administrator & they send me info on activities. So, go with the flow as much as you can. 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 From: JessicAbouhamama@...Date: Tue, 5 May 2009 11:37:19 -0400Subject: Re: Asking for help Tracie Please take some time for yourself and rest. You are always here for everyone, we will be ok. you are in my prayers Many Blessings A. In a message dated 05/04/09 22:27:01 Eastern Daylight Time, mary_s777 (AT) yahoo (DOT) com writes: 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. From: tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com>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 A Good Credit Score is 700 or Above. See yours in just 2 easy steps! 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 6, 2009 Report Share Posted May 6, 2009 Tracie, I hope you did take off for a week. I'm around here too. Just a hurting a bit cause we went for our annual anniversary getaway. It was great , I hate coming home. (I heard you saying you had gone away for a weekend too ...) Hugs, Debbie Subject: Re: Asking for helpTo: Neurosarcoidosis Date: Tuesday, May 5, 2009, 5:36 AM 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 6, 2009 Report Share Posted May 6, 2009 Tracie I'm not hiding from you! I had a 49 hour period of non sleep when I couldn't focus on anything at all. Maniced all over the place myself and didn't finish one thing. Saturday afternoon I went out to lunch with my sister & out to church. Wouldn't you know it when everyone sat down it got cool and I was battling not falling asleep. I lost! When I got home my internet & phone were out and couldn't cal repair til Monday & no one coming til Wednesday....I fixed it my self late Tuesday night giggling all the wires. I'm also on a 3 week regimine with the Cytoxin until I can get something else. The crap ain't working. The days I feel best are when I have the treatment and am full of IV prednisone type drugs. I would like to start a journal keeping track of things. I have the paperwork to ask the drug company to help but need to find my disability papers. UGGGG if I ever get organized I'll never let it get like this again!Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Subject: Asking for helpTo: neurosarcoidosis Date: Monday, May 4, 2009, 2:41 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 6, 2009 Report Share Posted May 6, 2009 Jackie When & where is Martha's daughters show on? Is this the one I saw on some channel, maybe Oprah, that Martha was paying like $39,000 a month for fertility treatments? Geez, I'm going to be a great grandmother in August. Maybe her daughter should come visit fertile KY?Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... 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 6, 2009 Report Share Posted May 6, 2009 Wasn't Elwood the name of one of the Blues Brothers? We'll have to get that elephant some sunglasses & one of those hats!Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... From: Rose <mamadogrose@ hotmail.com>Subject: RE: Asking for helpTo: neurosarcoidosis@ yahoogroups. comDate: 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. 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 6, 2009 Report Share Posted May 6, 2009 It is on FLN sometime after 10 pm. I believe. And yes you did hear that. I don't remember I think I read it in the papers gossip section. I am a grandmother of four, My mother has 22 grands and 38 greats. Talk about fertile. She only had 5 kids of her own. I told my family they should buy the kids and grandkids TV's so they have something else to do...*wink*. I only have 2 kids so the other 4 have done the damage. lol I hope you find the show. Jackie 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...
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