Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 In a message dated 6/5/02 11:14:20 PM Central Daylight Time, writes: > You know, I was just thinking;;;; hehehehe.....better not do that, I'll get > in trouble!! Anyway, with all the problems and hardships of raising a > child > with special needs, why must we bump into walls when trying to get help? I > > mean, don't these people (MHMR services, insurance companies, school > districts, medical professionals) realize how hard it is to try to live a > normal life, let alone have to fight for everything? > > Everything's a fight, struggle, battle, conflict, challenge......I see that > > lots of families in certain programs tend to give up, because they are so > tired of struggling....it takes a lot out of you every day.....why don't > the > schools give us what we want???? They waste MORE money wasting TIME in all > > these meetings, week after week, when they could be spending that time on > quality time for the kids. > > I don't know..... > > I was thinking that this week also . Shoot, I think that every week. I had to make five calls just to check up on things that others were supposed to be doing. I had to line up respite for a wedding and then call to get the funding. THen call someone else to get it approved. I had to call respite to check on our week in June since I haven't got a letter yet. I had to call ds clinic since no word from them just to find out our appt. got changed. I have to call 's new school to find out if he needs any supplies for next year. I did our schedule for in-home therapy since me staff don't have the time. All this when is stressed out and not sleeping which means that I don't get to sleep either. I called my state senator to complain about how hard it is to get info from medical assistance or to get anything done and they ask me to write a letter. I just about bit the woman's head off. " DIDN " T YOU HEAR ME, I " M TIRED OF HAVING TO DO EVERYTHING " . I just came across as " one of those people that wants services without having to do anything to get it " . Otherwise translated into one of those parents that doesn't want to do any of the work herself. Of course not, these bon bons I'm sitting around eating are just too delicious. I wish. Instead I'm spending hours trying to get my kid to wear his shoes so he can go to the last few days of school. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 In a message dated 6/6/02 11:04:50 AM Pacific Daylight Time, KVanRyzin@... writes: << I was thinking that this week also . Shoot, I think that every week. I had to make five calls just to check up on things that others were supposed to be doing. I had to line up respite for a wedding and then call to get the funding. THen call someone else to get it approved. I had to call respite to check on our week in June since I haven't got a letter yet. I had to call ds clinic since no word from them just to find out our appt. got changed. I have to call 's new school to find out if he needs any supplies for next year. I did our schedule for in-home therapy since me staff don't have the time. All this when is stressed out and not sleeping which means that I don't get to sleep either. I called my state senator to complain about how hard it is to get info from medical assistance or to get anything done and they ask me to write a letter. I just about bit the woman's head off. " DIDN " T YOU HEAR ME, I " M TIRED OF HAVING TO DO EVERYTHING " . I just came across as " one of those people that wants services without having to do anything to get it " . Otherwise translated into one of those parents that doesn't want to do any of the work herself. Of course not, these bon bons I'm sitting around eating are just too delicious. I wish. Instead I'm spending hours trying to get my kid to wear his shoes so he can go to the last few days of school. Karyn >> Did you have any time left for cooking, cleaning, laundry etc...? LOL If you give up the time you spend eating those Bon Bons, you would have that extra 40 hours a week to get the *free* services. LOL Gail :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 In a message dated 6/6/02 1:43:27 PM Pacific Daylight Time, paul.3@... writes: << Pat, who hasn't posted in a while (I think this was 's Mom from England) wrote: >> Speaking of those who haven't posted lately.....where's and Teri? Gail :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 > Of course not, these bon bons I'm sitting around eating are just too delicious. I wish. Instead I'm spending hours trying to get my kid to wear his shoes so he can go to the last few days of school. Does anyone remember a few years back- ooh- I found it! Pat, who hasn't posted in a while (I think this was 's Mom from England) wrote: The boys headteacher, a man, once asked me what do you do all day with all the children at school. I supervise the band of fairies who pop in to do some housework, then retire to my boudoir to eat chocolate and drink gin. Pat I think we all agreed after a while that those cleaning fairies just weren't too reliable, sadly... What I found to be very relaxing and helpful when real life gets too nuts is to go plan a vacation, or remember back to some places that really take me away mentally for a few minutes- such one ocean vacation we had, or early mornings at Cook Forest or the time we went to a monastery. (PEACE AND QUIET!) On the other hand, I have saved up and hired some cleaning help a few times. Others can have a massage or a facial- give me a good cleaning lady! MB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 Dennis: The reason some medicines are to be taken this way is that some interfere with the actions of another medication. -- Dodge " If a man does not keep pace with his companions perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away. " --Henry Thoreau Read my blog at: http://jumpthis.wordpress.com ---- Dennis W <betnden@...> wrote: ============= I keep seeing posts like: " My Rheumy has me on the eight mtx per week with folic acid. He has told me that you take the folic acid every day but wait until much later in the day to take it the day of the mtx. Also backed up by the pharmacist. Dave " . I've been trying to understand why a doc would put limits on taking Folic Acid, MTX, and others. I take my MTX, 1.2 cc, Folic Acid 2-3 mg per day, and all the others I've been accustomed to. Never has a medical person told me not to take one only when not taking the other, alternate days, and other instructions. I never get any limits. I don't understand, what else is new?. Dennis in eastexas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 Dennis, My rheummy has never said anything about not taking it the day I take my MTX also. I take my folic acid in the morning and take my MTX at night. Shirley > > I keep seeing posts like: " My Rheumy has me on the eight mtx per week with > folic acid. He has told me that you take the folic acid every day but wait > until much later in the day to take it the day of the mtx. Also backed up > by the pharmacist. > Dave " . I've been trying to understand why a doc would put limits on taking > Folic Acid, MTX, and others. I take my MTX, 1.2 cc, Folic Acid 2-3 mg per > day, and all the others I've been accustomed to. Never has a medical person > told me not to take one only when not taking the other, alternate days, and > other instructions. I never get any limits. I don't understand, what else is > new?. > > Dennis in eastexas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 Hi Dennis: I take my MTX injection, and then, 12 hours later, I take 2 Leucovorin pills, which is Folic Acid. Per Rheumy's RX. Hope you and Betty are feeling better. Hugs, Barbara > > I keep seeing posts like: " My Rheumy has me on the eight mtx per week with > folic acid. He has told me that you take the folic acid every day but wait > until much later in the day to take it the day of the mtx. Also backed up > by the pharmacist. > Dave " . I've been trying to understand why a doc would put limits on taking > Folic Acid, MTX, and others. I take my MTX, 1.2 cc, Folic Acid 2-3 mg per > day, and all the others I've been accustomed to. Never has a medical person > told me not to take one only when not taking the other, alternate days, and > other instructions. I never get any limits. I don't understand, what else is > new?. > > Dennis in eastexas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 Dennis, Because MTX is an anti-folate agent, some rheumatologists and researchers are concerned that the folic acid will reduce the efficacy of the MTX. Others aren't concerned because they believe the MTX works in ways independent of its anti-folate properties and that the impact, if any, is minor. They believe the benefits of taking the folic acid outweigh the risk of a possible reduction of efficacy of the MTX. There is no standard, but, probably, it's most common for patients with RA in the US to take 1 mg of folic acid every single day with no restriction on timing. Not an MD On Sat, Nov 15, 2008 at 7:07 PM, Dennis W <betnden@...> wrote: > I keep seeing posts like: " My Rheumy has me on the eight mtx per week with > folic acid. He has told me that you take the folic acid every day but wait > until much later in the day to take it the day of the mtx. Also backed up > by the pharmacist. > Dave " . I've been trying to understand why a doc would put limits on taking > Folic Acid, MTX, and others. I take my MTX, 1.2 cc, Folic Acid 2-3 mg per > day, and all the others I've been accustomed to. Never has a medical person > told me not to take one only when not taking the other, alternate days, and > other instructions. I never get any limits. I don't understand, what else is > new?. > > Dennis in eastexas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Hi Dennis, It really depends on the type of MTX you are taking as well as the Folic acid. There is a stronger Folic acid out that is time released and if taken the same day as MTX it will decrease the strength and the effectiveness of the MTX. I have also heard that if you are taking the MTX injections that it is best to take the folic acid ( the reg one) each day. ) I just know that is what my Rhu told me. Heidi M On Sat, Nov 15, 2008 at 8:07 PM, Dennis W <betnden@...> wrote: > I keep seeing posts like: " My Rheumy has me on the eight mtx per week > with > folic acid. He has told me that you take the folic acid every day but wait > until much later in the day to take it the day of the mtx. Also backed up > by the pharmacist. > Dave " . I've been trying to understand why a doc would put limits on taking > Folic Acid, MTX, and others. I take my MTX, 1.2 cc, Folic Acid 2-3 mg per > day, and all the others I've been accustomed to. Never has a medical person > told me not to take one only when not taking the other, alternate days, and > other instructions. I never get any limits. I don't understand, what else > is > new?. > > Dennis in eastexas > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Heidi, I'm taking the MTX sub-q and the Folic Acid is standard 1 mg tabs. I was taking only one per day when with the old Rummy when he increased the MTX to the max but not the Folic. My tongue swelled so that I couldn't talk easily and it was getting too big to fit into my mouth at all. A couple of answers from the girls explained my problem and what to do about it. I called the Rummy and was told, " of course, you're supposed to increase it. " I went to 5 mg per day and it took things back to almost normal and I went back to my regular Rheumy, and been good since. Dennis in eastexas On Mon, Nov 17, 2008 at 3:17 PM, Heidi Mendelsohn <hmendelsohn@...>wrote: > Hi Dennis, > It really depends on the type of MTX you are taking as well as the Folic > acid. There is a stronger Folic acid out that is time released and if taken > the same day as MTX it will decrease the strength and the effectiveness of > the MTX. I have also heard that if you are taking the MTX injections that > it > is best to take the folic acid ( the reg one) each day. ) I just know that > is what my Rhu told me. > Heidi M > > > On Sat, Nov 15, 2008 at 8:07 PM, Dennis W <betnden@...<betnden%40gmail.com>> > wrote: > > > I keep seeing posts like: " My Rheumy has me on the eight mtx per week > > with > > folic acid. He has told me that you take the folic acid every day but > wait > > until much later in the day to take it the day of the mtx. Also backed up > > by the pharmacist. > > Dave " . I've been trying to understand why a doc would put limits on > taking > > Folic Acid, MTX, and others. I take my MTX, 1.2 cc, Folic Acid 2-3 mg per > > day, and all the others I've been accustomed to. Never has a medical > person > > told me not to take one only when not taking the other, alternate days, > and > > other instructions. I never get any limits. I don't understand, what else > > is > > new?. > > > > Dennis in eastexas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 So, Dennis, I guess you were supposed to read his mind, huh? LOL. Sue On Monday, November 17, 2008, at 04:47 PM, Dennis W wrote: > Heidi, I'm taking the MTX sub-q and the Folic Acid is standard 1 mg > tabs. I > was taking only one per day when with the old Rummy when he increased > the > MTX to the max but not the Folic. My tongue swelled so that I couldn't > talk > easily and it was getting too big to fit into my mouth at all. A > couple of > answers from the girls explained my problem and what to do about it. I > called the Rummy and was told, " of course, you're supposed to increase > it. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Hi Dennis, I am glad you can take it. I had to stop the MTX (pills) as It got to where I was sick 4days a week. Maybe I will ask about the injection. It was helping the RA but my stomach just couldn't handle it. Heidibug On Mon, Nov 17, 2008 at 4:47 PM, Dennis W <betnden@...> wrote: > Heidi, I'm taking the MTX sub-q and the Folic Acid is standard 1 mg > tabs. I > was taking only one per day when with the old Rummy when he increased the > MTX to the max but not the Folic. My tongue swelled so that I couldn't talk > easily and it was getting too big to fit into my mouth at all. A couple of > answers from the girls explained my problem and what to do about it. I > called the Rummy and was told, " of course, you're supposed to increase it. " > I went to 5 mg per day and it took things back to almost normal and I went > back to my regular Rheumy, and been good since. > > Dennis in eastexas > > On Mon, Nov 17, 2008 at 3:17 PM, Heidi Mendelsohn <hmendelsohn@...<hmendelsohn%40gmail.com>>wrote: > > > > Hi Dennis, > > It really depends on the type of MTX you are taking as well as the Folic > > acid. There is a stronger Folic acid out that is time released and if > taken > > the same day as MTX it will decrease the strength and the effectiveness > of > > the MTX. I have also heard that if you are taking the MTX injections that > > it > > is best to take the folic acid ( the reg one) each day. ) I just know > that > > is what my Rhu told me. > > Heidi M > > > > > > On Sat, Nov 15, 2008 at 8:07 PM, Dennis W <betnden@...<betnden%40gmail.com> > <betnden%40gmail.com>> > > wrote: > > > > > I keep seeing posts like: " My Rheumy has me on the eight mtx per week > > > with > > > folic acid. He has told me that you take the folic acid every day but > > wait > > > until much later in the day to take it the day of the mtx. Also backed > up > > > by the pharmacist. > > > Dave " . I've been trying to understand why a doc would put limits on > > taking > > > Folic Acid, MTX, and others. I take my MTX, 1.2 cc, Folic Acid 2-3 mg > per > > > day, and all the others I've been accustomed to. Never has a medical > > person > > > told me not to take one only when not taking the other, alternate days, > > and > > > other instructions. I never get any limits. I don't understand, what > else > > > is > > > new?. > > > > > > Dennis in eastexas > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 MTX injections will bypass the stomach and present less damaging or uncomfortable symptoms. Relatives of mine have mouth and stomach problems but won't get the liquid for anything. When I was taking smaller doses, I'd put it in a glass of orange juice and drink it. I never noticed any problems or side-effects from MTX at all, or from the Folic Acid, either. Dennis in eastexas On Mon, Nov 17, 2008 at 3:58 PM, Heidi Mendelsohn <hmendelsohn@...>wrote: > Hi Dennis, > I am glad you can take it. I had to stop the MTX (pills) as It got to where > I was sick 4days a week. Maybe I will ask about the injection. It was > helping the RA but my stomach just couldn't handle it. > Heidibug > > > On Mon, Nov 17, 2008 at 4:47 PM, Dennis W <betnden@...<betnden%40gmail.com>> > wrote: > > > Heidi, I'm taking the MTX sub-q and the Folic Acid is standard 1 mg > > tabs. I > > was taking only one per day when with the old Rummy when he increased the > > MTX to the max but not the Folic. My tongue swelled so that I couldn't > talk > > easily and it was getting too big to fit into my mouth at all. A couple > of > > answers from the girls explained my problem and what to do about it. I > > called the Rummy and was told, " of course, you're supposed to increase > it. " > > I went to 5 mg per day and it took things back to almost normal and I > went > > back to my regular Rheumy, and been good since. > > > > Dennis in eastexas > > > > On Mon, Nov 17, 2008 at 3:17 PM, Heidi Mendelsohn <hmendelsohn@...<hmendelsohn%40gmail.com> > <hmendelsohn%40gmail.com>>wrote: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Dennis and Heidibug and group LOL. I can't take MXT cause I break out in hives. At first it wasn't a lot. It took a few months and it got real bad the hives before knew it was the MXT. I am itchy anyway so I thought it was my new bath soap. I changed my body lotion and finally it dawned on me it was the MXT. DARN. Clora ******************************************************************** > > Hi Dennis, > I am glad you can take it. I had to stop the MTX (pills) as It got to where > I was sick 4days a week. Maybe I will ask about the injection. It was > helping the RA but my stomach just couldn't handle it. > Heidibug > Quote Link to comment Share on other sites More sharing options...
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