Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 Hi , when you were talking about what your son said about killing himself while he still believes in God, it brought back memories of Bre , cause that is how she use to talk! She still can come up with the most unbelievable worries! It still amzazes me where her mind takes her. Hang in there and post any time you need to! Sandy > > My child got all upset today because I didn't do what his ocd need me > to do, which I didn't even realize he wanted me to do anything, and > then it was to late. He thought that might make him stop believing in > God. He then suggested that if he killed him self now while he > believes in God then he for sure would go to heaven and wouldn't have > to worry about not believing in the future. Well, I just don't know > what to do anymore. So I just laid right into him about his fear of > not believing being ocd and nothing more. I feel so desperate for > help and there is nobody here to help me. At least not for the next 2 > or 3 months. Just wanted to vent. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2007 Report Share Posted July 28, 2007 HEATHER this was understandable,it is frustrating, with the bad sciatica pain,I had, who could see it, I sure did feel it though, it was awful, the affected leg did not want to cooperate and walk . Keep your chin up girl!!! AnneGet a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2007 Report Share Posted July 28, 2007 Hi , I have been going through the same depression/not being able to sleep or wanting to sleep all the time. Although my disability is more visable because I have to use a walker and still can't walk worth a flip and in constant pain, people still look at me funny. I don't care anymore what people think . Let them live in my body for one day and they will change their attitudes!! Hold your head up and stare back at them!! God bless and hoping you have less pain soon, Annie~~ <heather371@...> wrote: HI Everyone~ Sorry to post a venting post, but lordy I need it today. I'm so tired of having non visible disabilities. I sort of lost it a bit tonight and had a ranting at home. But you know what, maybe if I was I was using a cane and they could visibly see my ailments then maybe they'd understand the pain I go through every day. I cant help it that they cant see my 60% lung capacity, I can't help it they cant see my vertigo and rsd pain. I have been dealing with some depression lately too. Feel like I could sleep for a week. Anways thanks for listening. Hugs http://nightdreamer371.bravejournal.com personal blog Never estimate the power of other people's love and prayer. When you put someone else at the center of your frame, the entire world changes for you. - Tony Snow at Catholic University, 2007 Get the free toolbar and rest assured with the added security of spyware protection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 Hi Annie, Thank you so much for the encouragement. Boy I sure do need it lately. I fight depression a lot, but this last one sure did sneak up on me. Yep, I agree let them be in our shoes for a week, and at the worst of times too. Then they'll shut up. But unfortunately, they can't be and we still have to endure their harrasement. I am so sorry hon for all the pain you are in. Wishing that I could take it away for all of us. hugs http://nightdreamer371.bravejournal.com Hi , I have been going through the same depression/not being able to sleep or wanting to sleep all the time. Although my disability is more visable because I have to use a walker and still can't walk worth a flip and in constant pain, people still look at me funny. I don't care anymore what people think . Let them live in my body for one day and they will change their attitudes!! Hold your head up and stare back at them!! God bless and hoping you have less pain soon, Annie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 Hi ette~ Thank you for your kind words. It really means a lot. Isn't it awful, they think I am not disabled because I don't walk with one, and you get it because you do. Can't win. They don't realize how their words and stares hurt. Like we would want this sort of life on purpose. Geez! I'm so glad to have found this group, and it's so nice to know other's "get it". HUGS http://nightdreamer371.bravejournal.com (((())))I understand what you're going through, as I do walk with a cane andpeople think I'm using it in order to get attention. They yell at mewhen I park in the disabled spots with a wheelchair on my tag alongwith a plague telling me as long as I can walk I DON'T need to park inone of those spots. The problem is I can't walk that long or standvery long without almost going down mainly due to arthritis andbreathing problems.Please hang in there and rant away as often as you need. Then I won'tfeel like such a heel when I kind of go off the deep end. :-)Hugs Love & Prayersette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 Hi Anne~ Nice to hear from you and thank you for the encouragement. When I have to go in the store, I too use a cart, between my lungs and vertigo and balance problems, I'd never make it through the store without one. What is a sciatica attack? I'm sorry you have to go through such awful pain. I hope things are going better with your leg now? I just wish people wouldn't judge so much the way they do. I know I try not to. HUGS http://nightdreamer371.bravejournal.com I just had a nasty time with a leg sprain which triggered a sciatica attack, I feel for you, people can be so rude,then again they can be understanding, I went shopping when I felt a tad better, some thought I am sure that using the cart as a sort of crutch that I was faking it, far from it, then when it came time to load a large dog food bag weighing 50lbs, I was ready to take it back into the store I found one lady who came right over and asked if I wanted help, she hoisted that bag for me into the car, Jusr keep going the way you can, there are good folks out there, more than the other kind. Anne Get a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 Hi ~ I have been to that site before and wrote to the owner before I love it. Thanks for the nice email and I may have to look into those walk aids. hugs http://nightdreamer371.bravejournal.com , have you printed and shared copies of the spoon theory to your friends and family? If not you should do so. The spoon theory really helps others understand what we, who have limited energy available are going through. BTW, with vertigo and the COPD, you should really get one of those nice walkers with wheels, seat, and basket and don't forget the hand brakes. Lovely things they are...I just got one. http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php venting HI Everyone~ Sorry to post a venting post, but lordy I need it today. I'm so tired of having non visible disabilities. I sort of lost it a bit tonight and had a ranting at home. But you know what, maybe if I was I was using a cane and they could visibly see my ailments then maybe they'd understand the pain I go through every day. I cant help it that they cant see my 60% lung capacity, I can't help it they cant see my vertigo and rsd pain. I have been dealing with some depression lately too. Feel like I could sleep for a week. Anways thanks for listening. Hugs http://nightdreamer 371.bravejournal .com personal blog Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 I would call Jana Lee or Terry Lynn at Dr Passo's office and I would also email Dr. Passo. The resident probably didn't read the chart, or didn't look in the computer (they have gone to computerized records). When I worked in the hospital, us nurses always had to ride herd on the resident because they were often clueless. Call one of the nurses I mentioned above and they will get this straightened out. Let them know how unhappy you are and they will take care of it. Let us know how it goes. and Rob 18 JAS venting > I just got a call from Calebs rheumy's resident and I was very > upset > by the end of the call that I just wonder how ompentent this > person > is taking care of my child. We had our appt on Monday and > we got > our dx of systemic JRA aka stills. Or so we thought both > me and my > husbad were there and we both heard what this dx was and that he > wanted to wait to start steroids yada yada yada. So we came home > with our diagnosis and we scared but relieved all at one > time. Well > today *his* resident calls me and wanted to tell me that they > are > setting up an MRI of my kids head that they think that somthing > might not be right in there.ummm ok that is fine lets do it if > you > feels its needed right. Ok then I proceed to go on to ask > her > questions about *our diagnosis* and she was like well we havent > came > to that diagnosis yet we think it is but we didnt say for > sure.....ok i dont think she was in the same room as us becasue > after getting off the phone with her i called my husband and > asked > him what was said in the visit and what was his > interpertutation. > He was the same as mine that the rheumy looked at us and said it > was > about time we named what this is. The he was giving it the > diagnosis of stills which i aksed umm ok what is that exactly > and he > said that was also known as systemic JIA. Then he > proceeded to go > on to tell the resident the other blood work he wanted > next time. > And that he was not going to start him on steroids now since his > blood work was good and he wants his eyes tested before starting > steroids. This is what we both got out of our visit. > I guess we > are dumber than what we thought and cant understand > english. OR the > DR didnt mean to say what he did. in any event this makes me so > mad > that I am thinking of finding someone else to take over my sons > care. Has anyone else ever went through this? Now > Caleb is sick > and started vomiting and she was treating me like I am a bad > mother > she was like you have to make him drink or we need to see him to > give him fluids I am going to call you back later in the day to > make > sure you are doing as you should......hummm I am a triage nurse > for > a peds office I DO know that he needs to drink but on the other > hand > I DO know that if he vomits you need to rest his stomach for 2 > hours > before starting to try to give anything else. I guess I am just > a > big fat idiot that knows nothing, because I am not a resident. > what > an A**. errr any advise? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 , Take a DEEP Breathe and count to 10 now take another DEEP Breathe. Ok Do like Maris said and try calling those nurses. Email the Dr and let him know about the call. You are not a Idiot even though some of the Medical field will make you think you are. Let it go as you do not need to end up with high blood pressure over it. I would always contact the Dr about any calls which have upset you. It is better to speak directly to a Dr and not go through the middle person as for some reason things do not get spoken right. Been on that road and finally got a Nurse whom I could trust and she understood the situation. Go get some Powerade for your child as this will be something which you as a Mom will know. Liquids for 24 hours then the child should be ok. just got over the throw ups and Power ade to the rescue Tale another DEEP breathe :-).. Robbin **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 what puts the kicker on the whole story is she was in the room with us! the lady just called us to find out days /times for MRI and she said and the dx for this is ? brain tumor due to cognative loss....OMG that is just flooring we go from JIA to a brain tumor in 3 days I am ready to be commited to the psyc ward! everytime i call their office i get the voicemail and rarley get them to call me back. I am just having the worst luck with this. And now we have a fever of 105 cant hold anything down and our famous rash is back ugh calgon take me away or just give me 5 minutes of ok things have to get better...a brain tumor...we just said it was not cancer from the bone marrow....but according to the *resident* that bone marrow will not show a brain tumor and a bone scan will not either....ok what really makes me fume is we have had pretty much the same sx this whole time and a brain tumor is just occuring to them? I told them about his headaches/memory loss/loss of coordination over a month ago.....and i was told oh that is all JIA like...for GOD's sake they sure know how to make a parent nuts! snooksmama@... wrote: I would call Jana Lee or Terry Lynn at Dr Passo's office and I would also email Dr. Passo. The resident probably didn't read the chart, or didn't look in the computer (they have gone to computerized records). When I worked in the hospital, us nurses always had to ride herd on the resident because they were often clueless. Call one of the nurses I mentioned above and they will get this straightened out. Let them know how unhappy you are and they will take care of it. Let us know how it goes. and Rob 18 JAS venting > I just got a call from Calebs rheumy's resident and I was very > upset > by the end of the call that I just wonder how ompentent this > person > is taking care of my child. We had our appt on Monday and > we got > our dx of systemic JRA aka stills. Or so we thought both > me and my > husbad were there and we both heard what this dx was and that he > wanted to wait to start steroids yada yada yada. So we came home > with our diagnosis and we scared but relieved all at one > time. Well > today *his* resident calls me and wanted to tell me that they > are > setting up an MRI of my kids head that they think that somthing > might not be right in there.ummm ok that is fine lets do it if > you > feels its needed right. Ok then I proceed to go on to ask > her > questions about *our diagnosis* and she was like well we havent > came > to that diagnosis yet we think it is but we didnt say for > sure.....ok i dont think she was in the same room as us becasue > after getting off the phone with her i called my husband and > asked > him what was said in the visit and what was his > interpertutation. > He was the same as mine that the rheumy looked at us and said it > was > about time we named what this is. The he was giving it the > diagnosis of stills which i aksed umm ok what is that exactly > and he > said that was also known as systemic JIA. Then he > proceeded to go > on to tell the resident the other blood work he wanted > next time. > And that he was not going to start him on steroids now since his > blood work was good and he wants his eyes tested before starting > steroids. This is what we both got out of our visit. > I guess we > are dumber than what we thought and cant understand > english. OR the > DR didnt mean to say what he did. in any event this makes me so > mad > that I am thinking of finding someone else to take over my sons > care. Has anyone else ever went through this? Now > Caleb is sick > and started vomiting and she was treating me like I am a bad > mother > she was like you have to make him drink or we need to see him to > give him fluids I am going to call you back later in the day to > make > sure you are doing as you should......hummm I am a triage nurse > for > a peds office I DO know that he needs to drink but on the other > hand > I DO know that if he vomits you need to rest his stomach for 2 > hours > before starting to try to give anything else. I guess I am just > a > big fat idiot that knows nothing, because I am not a resident. > what > an A**. errr any advise? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 , I want you to know that I will be praying for you, for your sanity, for the doctor and the resident. Some times the doctors/residents say things that just do not make sense. I will pray for your peace of mind and the ability to not give the wrong " piece " of your?mind to the doctor. I do not understand the way the doctor's office works. I am learning that they are all different and many times they work really good for one person and the next person that comes through the door they mess up way to much stuff. I will be watching to see your update and will continue to keep your family?in my prayers. Veri & Jaye 13 poly Re: venting what puts the kicker on the whole story is she was in the room with us! the lady just called us to find out days /times for MRI and she said and the dx for this is ? brain tumor due to cognative loss....OMG that is just flooring we go from JIA to a brain tumor in 3 days I am ready to be commited to the psyc ward! everytime i call their office i get the voicemail and rarley get them to call me back. I am just having the worst luck with this. And now we have a fever of 105 cant hold anything down and our famous rash is back ugh calgon take me away or just give me 5 minutes of ok things have to get better...a brain tumor...we just said it was not cancer from the bone marrow....but according to the *resident* that bone marrow will not show a brain tumor and a bone scan will not either....ok what really makes me fume is we have had pretty much the same sx this whole time and a brain tumor is just occuring to them? I told them about his headaches/memory loss/loss of coordination over a month ago.....and i was told oh that is all JIA like...for GOD's sake they sure know how to make a parent nuts! snooksmama@... wrote: I would call Jana Lee or Terry Lynn at Dr Passo's office and I would also email Dr. Passo. The resident probably didn't read the chart, or didn't look in the computer (they have gone to computerized records). When I worked in the hospital, us nurses always had to ride herd on the resident because they were often clueless. Call one of the nurses I mentioned above and they will get this straightened out. Let them know how unhappy you are and they will take care of it. Let us know how it goes. and Rob 18 JAS venting > I just got a call from Calebs rheumy's resident and I was very > upset > by the end of the call that I just wonder how ompentent this > person > is taking care of my child. We had our appt on Monday and > we got > our dx of systemic JRA aka stills. Or so we thought both > me and my > husbad were there and we both heard what this dx was and that he > wanted to wait to start steroids yada yada yada. So we came home > with our diagnosis and we scared but relieved all at one > time. Well > today *his* resident calls me and wanted to tell me that they > are > setting up an MRI of my kids head that they think that somthing > might not be right in there.ummm ok that is fine lets do it if > you > feels its needed right. Ok then I proceed to go on to ask > her > questions about *our diagnosis* and she was like well we havent > came > to that diagnosis yet we think it is but we didnt say for > sure.....ok i dont think she was in the same room as us becasue > after getting off the phone with her i called my husband and > asked > him what was said in the visit and what was his > interpertutation. > He was the same as mine that the rheumy looked at us and said it > was > about time we named what this is. The he was giving it the > diagnosis of stills which i aksed umm ok what is that exactly > and he > said that was also known as systemic JIA. Then he > proceeded to go > on to tell the resident the other blood work he wanted > next time. > And that he was not going to start him on steroids now since his > blood work was good and he wants his eyes tested before starting > steroids. This is what we both got out of our visit. > I guess we > are dumber than what we thought and cant understand > english. OR the > DR didnt mean to say what he did. in any event this makes me so > mad > that I am thinking of finding someone else to take over my sons > care. Has anyone else ever went through this? Now > Caleb is sick > and started vomiting and she was treating me like I am a bad > mother > she was like you have to make him drink or we need to see him to > give him fluids I am going to call you back later in the day to > make > sure you are doing as you should......hummm I am a triage nurse > for > a peds office I DO know that he needs to drink but on the other > hand > I DO know that if he vomits you need to rest his stomach for 2 > hours > before starting to try to give anything else. I guess I am just > a > big fat idiot that knows nothing, because I am not a resident. > what > an A**. errr any advise? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 I had Terrys email address from the rash pictures. So I sat down and emailed her last night and just told her that every time I call there I alwasys get voicemail and hours go by before anyone calls me back and told her a little about the resident. Has anyone had any expirence with this resident that I am talking about? snooksmama@... wrote: I would call Jana Lee or Terry Lynn at Dr Passo's office and I would also email Dr. Passo. The resident probably didn't read the chart, or didn't look in the computer (they have gone to computerized records). When I worked in the hospital, us nurses always had to ride herd on the resident because they were often clueless. Call one of the nurses I mentioned above and they will get this straightened out. Let them know how unhappy you are and they will take care of it. Let us know how it goes. and Rob 18 JAS venting > I just got a call from Calebs rheumy's resident and I was very > upset > by the end of the call that I just wonder how ompentent this > person > is taking care of my child. We had our appt on Monday and > we got > our dx of systemic JRA aka stills. Or so we thought both > me and my > husbad were there and we both heard what this dx was and that he > wanted to wait to start steroids yada yada yada. So we came home > with our diagnosis and we scared but relieved all at one > time. Well > today *his* resident calls me and wanted to tell me that they > are > setting up an MRI of my kids head that they think that somthing > might not be right in there.ummm ok that is fine lets do it if > you > feels its needed right. Ok then I proceed to go on to ask > her > questions about *our diagnosis* and she was like well we havent > came > to that diagnosis yet we think it is but we didnt say for > sure.....ok i dont think she was in the same room as us becasue > after getting off the phone with her i called my husband and > asked > him what was said in the visit and what was his > interpertutation. > He was the same as mine that the rheumy looked at us and said it > was > about time we named what this is. The he was giving it the > diagnosis of stills which i aksed umm ok what is that exactly > and he > said that was also known as systemic JIA. Then he > proceeded to go > on to tell the resident the other blood work he wanted > next time. > And that he was not going to start him on steroids now since his > blood work was good and he wants his eyes tested before starting > steroids. This is what we both got out of our visit. > I guess we > are dumber than what we thought and cant understand > english. OR the > DR didnt mean to say what he did. in any event this makes me so > mad > that I am thinking of finding someone else to take over my sons > care. Has anyone else ever went through this? Now > Caleb is sick > and started vomiting and she was treating me like I am a bad > mother > she was like you have to make him drink or we need to see him to > give him fluids I am going to call you back later in the day to > make > sure you are doing as you should......hummm I am a triage nurse > for > a peds office I DO know that he needs to drink but on the other > hand > I DO know that if he vomits you need to rest his stomach for 2 > hours > before starting to try to give anything else. I guess I am just > a > big fat idiot that knows nothing, because I am not a resident. > what > an A**. errr any advise? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 , I am trying to catch up on my e-mails but had to reply to yours as we went through a similar situation just yesterday, and often when we deal with the residents. is seen at UCLA/Mattel Children's Hospital so there are occasionally residents sent in prior to the dr. I can understand how terribly frustrating and confusing it must be for you, especially having Caleb just diagnosed - we have learned (and it is still frustrating) to take what they say with a grain of salt (or sometimes, dismiss it altogether) and if need be, clarify with the rheumy. It will take a little time to adjust to all the changes this is bringing into your life. As you know, this board is a fantastic resource. I hope that things get worked out rapidly for Caleb's treatment plan so that he is feeling better soon. (, 17, poly, cvid, migraines) nurse0300 <nurse0300@...> wrote: I just got a call from Calebs rheumy's resident and I was very upset by the end of the call that I just wonder how ompentent this person is taking care of my child. We had our appt on Monday and we got our dx of systemic JRA aka stills. Or so we thought both me and my husbad were there and we both heard what this dx was and that he wanted to wait to start steroids yada yada yada. So we came home with our diagnosis and we scared but relieved all at one time. Well today *his* resident calls me and wanted to tell me that they are setting up an MRI of my kids head that they think that somthing might not be right in there.ummm ok that is fine lets do it if you feels its needed right. Ok then I proceed to go on to ask her questions about *our diagnosis* and she was like well we havent came to that diagnosis yet we think it is but we didnt say for sure.....ok i dont think she was in the same room as us becasue after getting off the phone with her i called my husband and asked him what was said in the visit and what was his interpertutation. He was the same as mine that the rheumy looked at us and said it was about time we named what this is. The he was giving it the diagnosis of stills which i aksed umm ok what is that exactly and he said that was also known as systemic JIA. Then he proceeded to go on to tell the resident the other blood work he wanted next time. And that he was not going to start him on steroids now since his blood work was good and he wants his eyes tested before starting steroids. This is what we both got out of our visit. I guess we are dumber than what we thought and cant understand english. OR the DR didnt mean to say what he did. in any event this makes me so mad that I am thinking of finding someone else to take over my sons care. Has anyone else ever went through this? Now Caleb is sick and started vomiting and she was treating me like I am a bad mother she was like you have to make him drink or we need to see him to give him fluids I am going to call you back later in the day to make sure you are doing as you should......hummm I am a triage nurse for a peds office I DO know that he needs to drink but on the other hand I DO know that if he vomits you need to rest his stomach for 2 hours before starting to try to give anything else. I guess I am just a big fat idiot that knows nothing, because I am not a resident. what an A**. errr any advise? --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 , I am hoping you can talk with the Job and see if you can take the last few hours off and take your child to the office. I would call the office and say ok I am coming at so and so time and I do not want to wait long. Some jobs will see this is important and allow you to take a couple of hours off. Measure the knee Now and write down the measurement So if asked about it tomorrow you can say ok it was this last night. You could say fax me the Labs and MRI results as I have done with 's Dr's. Then you can see what is going on. You can even ask your Employer to look them over for you. I know Our Dr has gone over 's Labs and MRI just to let me know what would be a good next step. Take a DEEP Breathe ok and let it out. At least that Dr's office did call and want to see your child. I would not leave that office until I had questions answered. Robbin **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hi , I am sorry to hear about your early struggles. I think it is so hard in the beginning. You want to feel supported and that you have someone to rely on when you have questions and/or emergencies for your child..... My daughter sees Dr. Graham at Cincinnati Children's and when initially diagnosed was seen by a Fellow who was wonderful and very attentive. He called us after every blood lab result came back and whenever we had a questions. He was with us for the initial dx and the following 8 months or so. He then went on to his research rotation. Since then we have only seen Dr. Graham. At first it was hard because he was our main communicator. Now we think it is kind of nice in that it speeds up the appointments which is great when the patient is only 3 years old Dr. Graham is very easy to communicate with and compassionate (he did listen to me cry the day my daughter was dx and said all the right things). My daughter was dx in 15 minutes. But she was classic symptoms and very straight forward too (although the fellow did miss it). Dr. Graham has always answered my email (I have only done this 4 times). I also have his hospital cell phone number (not sure how I got that but hold on tight to it!). I have only used that twice and really try not to call that and go through the office first. We have been at Children's since Anabelle's dx June 2006 and have over all had a very good experience. We have also seen Dr. Lovell at Cincinnati Children's for a consultation when we started Humira 3 months ago to help with our appeal of drug coverage (He was the lead investigator for this drug in JRA) and was more than willingly to write a letter in support of Anabelle's treatment. We have never met Dr. Passo. It is my understanding that Dr. Passo and Dr. Graham see the majority of patients at the clinic. Dr. Passo has more experience (been doing it longer) than Dr. Graham. Dr. Lovell is very involved in research but sees patients 2 days a week. Have you thought about a consultation with another Dr. at the facility? If you go to Rheum's webpage they have bios on all the Drs. too. Just a thought...... I hope the little background info is somewhat helpful. Cheri and Anabelle (JIA/uveitis) venting @group s.com > I just got a call from Calebs rheumy's resident and I was very > upset > by the end of the call that I just wonder how ompentent this > person > is taking care of my child. We had our appt on Monday and > we got > our dx of systemic JRA aka stills. Or so we thought both > me and my > husbad were there and we both heard what this dx was and that he > wanted to wait to start steroids yada yada yada. So we came home > with our diagnosis and we scared but relieved all at one > time. Well > today *his* resident calls me and wanted to tell me that they > are > setting up an MRI of my kids head that they think that somthing > might not be right in there.ummm ok that is fine lets do it if > you > feels its needed right. Ok then I proceed to go on to ask > her > questions about *our diagnosis* and she was like well we havent > came > to that diagnosis yet we think it is but we didnt say for > sure.....ok i dont think she was in the same room as us becasue > after getting off the phone with her i called my husband and > asked > him what was said in the visit and what was his > interpertutation. > He was the same as mine that the rheumy looked at us and said it > was > about time we named what this is. The he was giving it the > diagnosis of stills which i aksed umm ok what is that exactly > and he > said that was also known as systemic JIA. Then he > proceeded to go > on to tell the resident the other blood work he wanted > next time. > And that he was not going to start him on steroids now since his > blood work was good and he wants his eyes tested before starting > steroids. This is what we both got out of our visit. > I guess we > are dumber than what we thought and cant understand > english. OR the > DR didnt mean to say what he did. in any event this makes me so > mad > that I am thinking of finding someone else to take over my sons > care. Has anyone else ever went through this? Now > Caleb is sick > and started vomiting and she was treating me like I am a bad > mother > she was like you have to make him drink or we need to see him to > give him fluids I am going to call you back later in the day to > make > sure you are doing as you should...... hummm I am a triage nurse > for > a peds office I DO know that he needs to drink but on the other > hand > I DO know that if he vomits you need to rest his stomach for 2 > hours > before starting to try to give anything else. I guess I am just > a > big fat idiot that knows nothing, because I am not a resident. > what > an A**. errr any advise? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 we were just discusing going to the cleveland clinic for a 2nd opinion this will cost alot to get there and back but may be worth it. I am just so D**n mad about this whole thing my kid has been sick for 11 weeks now and nobody can give us any answers. WE went for an MRI of the brain today. The residnet called us this eve to check on Caleb since he had been sick. She said that MRI looked ok but we needed to come into the office tomorrow i also told her his right knee is swollen but when he gets there tomorrow they wont think so I am sure...ugh....I told her that i can not come in tomorrow that i had to work and if i have to keep taking off of work I will be fired she said well tell them that this is a medical emergency that your son is seriously sick and you have to be with him, ok how do you get seriously sick from a visit that you know the outcome already its going to be the same as it has been that last 7 weekly visits. what to do except commit yourself to the nuthouse LOL. > I would call Jana Lee or Terry Lynn at Dr Passo's office and I would also email Dr. Passo. The resident probably didn't read the chart, or didn't look in the computer (they have gone to computerized records). When I worked in the hospital, us nurses always had to ride herd on the resident because they were often clueless. Call one of the nurses I mentioned above and they will get this straightened out. Let them know how unhappy you are and they will take care of it. > Let us know how it goes. > and Rob 18 JAS > > venting > @group s.com > > > I just got a call from Calebs rheumy's resident and I was very > > upset > > by the end of the call that I just wonder how ompentent this > > person > > is taking care of my child. We had our appt on Monday and > > we got > > our dx of systemic JRA aka stills. Or so we thought both > > me and my > > husbad were there and we both heard what this dx was and that he > > wanted to wait to start steroids yada yada yada. So we came home > > with our diagnosis and we scared but relieved all at one > > time. Well > > today *his* resident calls me and wanted to tell me that they > > are > > setting up an MRI of my kids head that they think that somthing > > might not be right in there.ummm ok that is fine lets do it if > > you > > feels its needed right. Ok then I proceed to go on to ask > > her > > questions about *our diagnosis* and she was like well we havent > > came > > to that diagnosis yet we think it is but we didnt say for > > sure.....ok i dont think she was in the same room as us becasue > > after getting off the phone with her i called my husband and > > asked > > him what was said in the visit and what was his > > interpertutation. > > He was the same as mine that the rheumy looked at us and said it > > was > > about time we named what this is. The he was giving it the > > diagnosis of stills which i aksed umm ok what is that exactly > > and he > > said that was also known as systemic JIA. Then he > > proceeded to go > > on to tell the resident the other blood work he wanted > > next time. > > And that he was not going to start him on steroids now since his > > blood work was good and he wants his eyes tested before starting > > steroids. This is what we both got out of our visit. > > I guess we > > are dumber than what we thought and cant understand > > english. OR the > > DR didnt mean to say what he did. in any event this makes me so > > mad > > that I am thinking of finding someone else to take over my sons > > care. Has anyone else ever went through this? Now > > Caleb is sick > > and started vomiting and she was treating me like I am a bad > > mother > > she was like you have to make him drink or we need to see him to > > give him fluids I am going to call you back later in the day to > > make > > sure you are doing as you should...... hummm I am a triage nurse > > for > > a peds office I DO know that he needs to drink but on the other > > hand > > I DO know that if he vomits you need to rest his stomach for 2 > > hours > > before starting to try to give anything else. I guess I am just > > a > > big fat idiot that knows nothing, because I am not a resident. > > what > > an A**. errr any advise? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 I know there is a ped rheumy in Columbus at the Children's hospital, Ohio State University. That is where Chris' ped rheumy went when he left University of Chicago last summer. His name is Dr. Spencer and he is quite good. If you are looking for a second opinion, that may be one place to try. I am not sure how close or far from you that is; just thought I would put the info out there. By the way, you pretty much do feel like getting in line for the nuthouse after you deal with all of this! LOL I'm sure many of us feel like joining you! Keep up the good fight; with all of this, all you can do is keep going forward and searching for that answer. Michele ( 20, spondy) ________________________________ From: [mailto: ] On Behalf Of nurse0300 Sent: Thursday, January 10, 2008 7:09 PM Subject: Re: venting we were just discusing going to the cleveland clinic for a 2nd opinion this will cost alot to get there and back but may be worth it. I am just so D**n mad about this whole thing my kid has been sick for 11 weeks now and nobody can give us any answers. WE went for an MRI of the brain today. The residnet called us this eve to check on Caleb since he had been sick. She said that MRI looked ok but we needed to come into the office tomorrow i also told her his right knee is swollen but when he gets there tomorrow they wont think so I am sure...ugh....I told her that i can not come in tomorrow that i had to work and if i have to keep taking off of work I will be fired she said well tell them that this is a medical emergency that your son is seriously sick and you have to be with him, ok how do you get seriously sick from a visit that you know the outcome already its going to be the same as it has been that last 7 weekly visits. what to do except commit yourself to the nuthouse LOL. > I would call Jana Lee or Terry Lynn at Dr Passo's office and I would also email Dr. Passo. The resident probably didn't read the chart, or didn't look in the computer (they have gone to computerized records). When I worked in the hospital, us nurses always had to ride herd on the resident because they were often clueless. Call one of the nurses I mentioned above and they will get this straightened out. Let them know how unhappy you are and they will take care of it. > Let us know how it goes. > and Rob 18 JAS > > venting > @group s.com > > > I just got a call from Calebs rheumy's resident and I was very > > upset > > by the end of the call that I just wonder how ompentent this > > person > > is taking care of my child. We had our appt on Monday and > > we got > > our dx of systemic JRA aka stills. Or so we thought both > > me and my > > husbad were there and we both heard what this dx was and that he > > wanted to wait to start steroids yada yada yada. So we came home > > with our diagnosis and we scared but relieved all at one > > time. Well > > today *his* resident calls me and wanted to tell me that they > > are > > setting up an MRI of my kids head that they think that somthing > > might not be right in there.ummm ok that is fine lets do it if > > you > > feels its needed right. Ok then I proceed to go on to ask > > her > > questions about *our diagnosis* and she was like well we havent > > came > > to that diagnosis yet we think it is but we didnt say for > > sure.....ok i dont think she was in the same room as us becasue > > after getting off the phone with her i called my husband and > > asked > > him what was said in the visit and what was his > > interpertutation. > > He was the same as mine that the rheumy looked at us and said it > > was > > about time we named what this is. The he was giving it the > > diagnosis of stills which i aksed umm ok what is that exactly > > and he > > said that was also known as systemic JIA. Then he > > proceeded to go > > on to tell the resident the other blood work he wanted > > next time. > > And that he was not going to start him on steroids now since his > > blood work was good and he wants his eyes tested before starting > > steroids. This is what we both got out of our visit. > > I guess we > > are dumber than what we thought and cant understand > > english. OR the > > DR didnt mean to say what he did. in any event this makes me so > > mad > > that I am thinking of finding someone else to take over my sons > > care. Has anyone else ever went through this? Now > > Caleb is sick > > and started vomiting and she was treating me like I am a bad > > mother > > she was like you have to make him drink or we need to see him to > > give him fluids I am going to call you back later in the day to > > make > > sure you are doing as you should...... hummm I am a triage nurse > > for > > a peds office I DO know that he needs to drink but on the other > > hand > > I DO know that if he vomits you need to rest his stomach for 2 > > hours > > before starting to try to give anything else. I guess I am just > > a > > big fat idiot that knows nothing, because I am not a resident. > > what > > an A**. errr any advise? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 It's good to vent sometimes . After reading your post, I feel it is the ivermectin that is making you feel like giving up. I only used it topically, in a few spots, but it caused mental impairment, like I was drunk or something, and I could barely function. I felt like being dead too, but I was too listless to kill myself or anything radical like that. Do you really need to take the ivermectin? It sounds like your bugs have become resistant to it. Can you try the lyme diet, and then do something in conjunction with the diet? It's not a difficult diet. I've been doing it for about a month now, in conjunction with supplements of Pantothenic acid, L-carnitine, vitamin C, milk thistle, B vitamins, and " acne formula " - an ayurvedic formula I've been taking for months. Intuitively, I think the Pantothenic acid has made the biggest difference. If you can send me your email address, I will forward the lyme diet to you. I'm too old and dumb to figure out your email address. Even though it seems like the problem will last forever, it won't. myrtle > > For the past couple of days I have felt the urge not to live anymore. > Yesterday when I was coming back from work, I have to cross a busy > interception in the opposite direction and it was at one point I was > hoping one would hit me and this would be all over with. I can't > describe how frustrating this is to a person who has never had this > but I know most of you know. I normally break down crying at least > four times a day now. > My apartment is covered in head to toe in Epsom salt and I bought a > dehumidifier. It doesn't seem to be working. I'm on my six time > taking ivermectin. My eye sight has started to go because of the > sulfur, my throat hurts everyone once in a while from the cleaning > products, and my brain has lost so much intelligence. I don't > understand why there is nothing out there for help. I just don't. I > have a doctor's appointment on Tuesday to get Tetracycline but fear > rejection once again. I only get so many appointments a year and > don't have the money to keep on pumping them out. I'm trying to > commit myself to only this and work but I fear at points it is too > much. My parents have not been much help but I guess I can > understand. My brother has some kind of chromosome disorder causing > seizures so they mostly bothered with him or my sister who is still in > high school. They sent the money for the dehumidifier but I don't > think they can handle anymore emotional drama. Not to mention my mom > won't shut-up about student loans and how I don't want to get bad > credit. I'm going to be honest, I don't fucking care right now. > The thing that sucks most about this is I didn't do anything to get > this. I didn't have sex with 12 random guys in a methlab, didn't > smoke, do drugs, snort glue, and yet here I am, once a perfectly > healthy individual, slowly destroying myself in attempt to free myself > of something that no one will help me with. I once had an IQ of 130, > nice skin, and was a pretty easy going person. Now I fear my brain > will be mush before this is over, think I might have skin cancer on > some moles, and constantly am depressed. Not to mention my new > neighbors already think I'm a nut job. My apartment looks like a meth > lab. I understand their view point but unfortunately I feel I can't > explain the situation. Every once in a while my boyfriend will come > over and suggest I get something like a table or a dresser. I get so > annoyed because it isn't like I don't want those items, I just don't > want another thing to clean. I don't enjoy wall to wall Epsom salt, > sleeping on an air mattress, and riding a bike to work. I don't even > wear clothes I like because I don't want to put money in something I'm > going to want to throw away later. I used to be a good dresser too.... > My friend gave me some Zantaxs, however you spell that, to help with > the stress but I don't want to bombard myself with anymore crap. I > feel like and AIDS patient, no offense to AIDS patients, but with the > amount of medicine I'm taking, we share a common bond. I don' t have > anything I look forward to anymore accept leaving all this behind. > I'm also probably really depressed due to the Ivermectin. > At work I've stopped caring. At home I've stopped caring. Even in my > friendships and family I've stopped caring. I would leave everything > behind to be free of this. Unfortunately, even if I did that, I would > bring them along. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Dear , I am so sad to read about your sadness. But I fell EXACTLY THE SAME WAY!!!!!!!!! I do not know what to say to make you feel better....I wish I did. Just know that you are not the only one who feels this----your post could have been my post--that is how much I feel the same exact emotions as you. I do not have a car right now becuase my bug-infested car got totalled---THANK GOD!!!! It was the best thing to happen--sad huh? I do not want to buy another car right now and have another thing to clean! My clothes are all getting ruined from all the cleaning I do to them. I refuse to buy cute clothes because I know they will get ruined. I look like a Walmart poster-girl!!!!! I used to dress cute, be social, happy, gregarious, outgoing, super athletic and smart. Now I feel like you do....I am withdrawn, cranky, sad and depressed. I am alive right now only because I love my little dog and my mom, brother and boyfriend. Sometimes it gets so bad that I have to think about a story I saw on the news where these college girls got raped multiple times by 3 men. Or another story where a woman got raped and the man also bashed her teeth out....I think about those women and then I feel just the tiniest bit grateful that that has not happened to me. but then it makes me sad that the world is so cruel that it happened to those women....ugh! I dont know if I am helping you at all--but sometimes just knowing that someone else understands your pain and even feels the same pain is somewhat of a comfort. I always think about how people with other diseases, like cancer, get to be honest and tell people what they have. People will feel sorry for them and buy them presents and try to help them. Doctors dont tell them they are crazy. We dont even get to be treated like people going thru hell because the doctors dont acknowedge our problem as real. Also--the dishonesty in not being able to tell people about it because they will not believe you. My only hope is the people who have gotten over this. Where do you live?? If you need someone to talk to--email me and I will send you my phone number to your personal email. I know it is not enough--but we do love you here on this forum --although we have never met---and we all can understand and empathize with your feelings. You CAN AND SHOULD vent all you like on this forum!!!!! It is probably the one thing that will keep you slightly sane!!!! One time I was sad and someone on here told me i should be thankful that at least I am not paralyzed--think about that... PLEASE GO OUTSIDE AND GO FOR A WALK---I BET IT WILL CHEER YOU UP!!! LL > From: <amandatheclimber@...> > Subject: Venting > bird mites > Date: Saturday, June 21, 2008, 6:33 PM > For the past couple of days I have felt the urge not to live > anymore. > Yesterday when I was coming back from work, I have to > cross a busy > interception in the opposite direction and it was at one > point I was > hoping one would hit me and this would be all over with. I > can't > describe how frustrating this is to a person who has never > had this > but I know most of you know. I normally break down crying > at least > four times a day now. > My apartment is covered in head to toe in Epsom salt and I > bought a > dehumidifier. It doesn't seem to be working. I'm > on my six time > taking ivermectin. My eye sight has started to go because > of the > sulfur, my throat hurts everyone once in a while from the > cleaning > products, and my brain has lost so much intelligence. I > don't > understand why there is nothing out there for help. I just > don't. I > have a doctor's appointment on Tuesday to get > Tetracycline but fear > rejection once again. I only get so many appointments a > year and > don't have the money to keep on pumping them out. > I'm trying to > commit myself to only this and work but I fear at points it > is too > much. My parents have not been much help but I guess I can > understand. My brother has some kind of chromosome > disorder causing > seizures so they mostly bothered with him or my sister who > is still in > high school. They sent the money for the dehumidifier but > I don't > think they can handle anymore emotional drama. Not to > mention my mom > won't shut-up about student loans and how I don't > want to get bad > credit. I'm going to be honest, I don't fucking > care right now. > The thing that sucks most about this is I didn't do > anything to get > this. I didn't have sex with 12 random guys in a > methlab, didn't > smoke, do drugs, snort glue, and yet here I am, once a > perfectly > healthy individual, slowly destroying myself in attempt to > free myself > of something that no one will help me with. I once had an > IQ of 130, > nice skin, and was a pretty easy going person. Now I fear > my brain > will be mush before this is over, think I might have skin > cancer on > some moles, and constantly am depressed. Not to mention my > new > neighbors already think I'm a nut job. My apartment > looks like a meth > lab. I understand their view point but unfortunately I > feel I can't > explain the situation. Every once in a while my boyfriend > will come > over and suggest I get something like a table or a dresser. > I get so > annoyed because it isn't like I don't want those > items, I just don't > want another thing to clean. I don't enjoy wall to > wall Epsom salt, > sleeping on an air mattress, and riding a bike to work. I > don't even > wear clothes I like because I don't want to put money > in something I'm > going to want to throw away later. I used to be a good > dresser too.... > My friend gave me some Zantaxs, however you spell that, to > help with > the stress but I don't want to bombard myself with > anymore crap. I > feel like and AIDS patient, no offense to AIDS patients, > but with the > amount of medicine I'm taking, we share a common bond. > I don' t have > anything I look forward to anymore accept leaving all this > behind. > I'm also probably really depressed due to the > Ivermectin. > At work I've stopped caring. At home I've stopped > caring. Even in my > friendships and family I've stopped caring. I would > leave everything > behind to be free of this. Unfortunately, even if I did > that, I would > bring them along. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 You may want to go to emergency and ask for some help there. Kathy Venting > For the past couple of days I have felt the urge not to live anymore. > Yesterday when I was coming back from work, I have to cross a busy > interception in the opposite direction and it was at one point I was > hoping one would hit me and this would be all over with. I can't > describe how frustrating this is to a person who has never had this > but I know most of you know. I normally break down crying at least > four times a day now. > My apartment is covered in head to toe in Epsom salt and I bought a > dehumidifier. It doesn't seem to be working. I'm on my six time > taking ivermectin. My eye sight has started to go because of the > sulfur, my throat hurts everyone once in a while from the cleaning > products, and my brain has lost so much intelligence. I don't > understand why there is nothing out there for help. I just don't. I > have a doctor's appointment on Tuesday to get Tetracycline but fear > rejection once again. I only get so many appointments a year and > don't have the money to keep on pumping them out. I'm trying to > commit myself to only this and work but I fear at points it is too > much. My parents have not been much help but I guess I can > understand. My brother has some kind of chromosome disorder causing > seizures so they mostly bothered with him or my sister who is still in > high school. They sent the money for the dehumidifier but I don't > think they can handle anymore emotional drama. Not to mention my mom > won't shut-up about student loans and how I don't want to get bad > credit. I'm going to be honest, I don't fucking care right now. > The thing that sucks most about this is I didn't do anything to get > this. I didn't have sex with 12 random guys in a methlab, didn't > smoke, do drugs, snort glue, and yet here I am, once a perfectly > healthy individual, slowly destroying myself in attempt to free myself > of something that no one will help me with. I once had an IQ of 130, > nice skin, and was a pretty easy going person. Now I fear my brain > will be mush before this is over, think I might have skin cancer on > some moles, and constantly am depressed. Not to mention my new > neighbors already think I'm a nut job. My apartment looks like a meth > lab. I understand their view point but unfortunately I feel I can't > explain the situation. Every once in a while my boyfriend will come > over and suggest I get something like a table or a dresser. I get so > annoyed because it isn't like I don't want those items, I just don't > want another thing to clean. I don't enjoy wall to wall Epsom salt, > sleeping on an air mattress, and riding a bike to work. I don't even > wear clothes I like because I don't want to put money in something I'm > going to want to throw away later. I used to be a good dresser too.... > My friend gave me some Zantaxs, however you spell that, to help with > the stress but I don't want to bombard myself with anymore crap. I > feel like and AIDS patient, no offense to AIDS patients, but with the > amount of medicine I'm taking, we share a common bond. I don' t have > anything I look forward to anymore accept leaving all this behind. > I'm also probably really depressed due to the Ivermectin. > At work I've stopped caring. At home I've stopped caring. Even in my > friendships and family I've stopped caring. I would leave everything > behind to be free of this. Unfortunately, even if I did that, I would > bring them along. > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 amandatheclimber@... > > > > For the past couple of days I have felt the urge not to live anymore. > > Yesterday when I was coming back from work, I have to cross a busy > > interception in the opposite direction and it was at one point I was > > hoping one would hit me and this would be all over with. I can't > > describe how frustrating this is to a person who has never had this > > but I know most of you know. I normally break down crying at least > > four times a day now. > > My apartment is covered in head to toe in Epsom salt and I bought a > > dehumidifier. It doesn't seem to be working. I'm on my six time > > taking ivermectin. My eye sight has started to go because of the > > sulfur, my throat hurts everyone once in a while from the cleaning > > products, and my brain has lost so much intelligence. I don't > > understand why there is nothing out there for help. I just don't. I > > have a doctor's appointment on Tuesday to get Tetracycline but fear > > rejection once again. I only get so many appointments a year and > > don't have the money to keep on pumping them out. I'm trying to > > commit myself to only this and work but I fear at points it is too > > much. My parents have not been much help but I guess I can > > understand. My brother has some kind of chromosome disorder causing > > seizures so they mostly bothered with him or my sister who is still in > > high school. They sent the money for the dehumidifier but I don't > > think they can handle anymore emotional drama. Not to mention my mom > > won't shut-up about student loans and how I don't want to get bad > > credit. I'm going to be honest, I don't fucking care right now. > > The thing that sucks most about this is I didn't do anything to get > > this. I didn't have sex with 12 random guys in a methlab, didn't > > smoke, do drugs, snort glue, and yet here I am, once a perfectly > > healthy individual, slowly destroying myself in attempt to free myself > > of something that no one will help me with. I once had an IQ of 130, > > nice skin, and was a pretty easy going person. Now I fear my brain > > will be mush before this is over, think I might have skin cancer on > > some moles, and constantly am depressed. Not to mention my new > > neighbors already think I'm a nut job. My apartment looks like a meth > > lab. I understand their view point but unfortunately I feel I can't > > explain the situation. Every once in a while my boyfriend will come > > over and suggest I get something like a table or a dresser. I get so > > annoyed because it isn't like I don't want those items, I just don't > > want another thing to clean. I don't enjoy wall to wall Epsom salt, > > sleeping on an air mattress, and riding a bike to work. I don't even > > wear clothes I like because I don't want to put money in something I'm > > going to want to throw away later. I used to be a good dresser too.... > > My friend gave me some Zantaxs, however you spell that, to help with > > the stress but I don't want to bombard myself with anymore crap. I > > feel like and AIDS patient, no offense to AIDS patients, but with the > > amount of medicine I'm taking, we share a common bond. I don' t have > > anything I look forward to anymore accept leaving all this behind. > > I'm also probably really depressed due to the Ivermectin. > > At work I've stopped caring. At home I've stopped caring. Even in my > > friendships and family I've stopped caring. I would leave everything > > behind to be free of this. Unfortunately, even if I did that, I would > > bring them along. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 I think going for walk might actually help. I'm glad it is sunny outside. I live in portland. Humidity has been so high which might explain the explosion of the population. I see the red bird mites every where now, the ones that are actually on birds. I had to come into work today to make up hours I've been missing. I've already used so much of my vacation and sick days. Actually, I can totally related with your comment about dressing cute and being athletic. And I do look like a Walmart girl. If I get over this, it will be my greatest accomplishment ever! And actually, it might be nice to have someone to talk to that is actually going through this. My email is amandatheclimber@... > > > From: <amandatheclimber@...> > > Subject: Venting > > bird mites > > Date: Saturday, June 21, 2008, 6:33 PM > > For the past couple of days I have felt the urge not to live > > anymore. > > Yesterday when I was coming back from work, I have to > > cross a busy > > interception in the opposite direction and it was at one > > point I was > > hoping one would hit me and this would be all over with. I > > can't > > describe how frustrating this is to a person who has never > > had this > > but I know most of you know. I normally break down crying > > at least > > four times a day now. > > My apartment is covered in head to toe in Epsom salt and I > > bought a > > dehumidifier. It doesn't seem to be working. I'm > > on my six time > > taking ivermectin. My eye sight has started to go because > > of the > > sulfur, my throat hurts everyone once in a while from the > > cleaning > > products, and my brain has lost so much intelligence. I > > don't > > understand why there is nothing out there for help. I just > > don't. I > > have a doctor's appointment on Tuesday to get > > Tetracycline but fear > > rejection once again. I only get so many appointments a > > year and > > don't have the money to keep on pumping them out. > > I'm trying to > > commit myself to only this and work but I fear at points it > > is too > > much. My parents have not been much help but I guess I can > > understand. My brother has some kind of chromosome > > disorder causing > > seizures so they mostly bothered with him or my sister who > > is still in > > high school. They sent the money for the dehumidifier but > > I don't > > think they can handle anymore emotional drama. Not to > > mention my mom > > won't shut-up about student loans and how I don't > > want to get bad > > credit. I'm going to be honest, I don't fucking > > care right now. > > The thing that sucks most about this is I didn't do > > anything to get > > this. I didn't have sex with 12 random guys in a > > methlab, didn't > > smoke, do drugs, snort glue, and yet here I am, once a > > perfectly > > healthy individual, slowly destroying myself in attempt to > > free myself > > of something that no one will help me with. I once had an > > IQ of 130, > > nice skin, and was a pretty easy going person. Now I fear > > my brain > > will be mush before this is over, think I might have skin > > cancer on > > some moles, and constantly am depressed. Not to mention my > > new > > neighbors already think I'm a nut job. My apartment > > looks like a meth > > lab. I understand their view point but unfortunately I > > feel I can't > > explain the situation. Every once in a while my boyfriend > > will come > > over and suggest I get something like a table or a dresser. > > I get so > > annoyed because it isn't like I don't want those > > items, I just don't > > want another thing to clean. I don't enjoy wall to > > wall Epsom salt, > > sleeping on an air mattress, and riding a bike to work. I > > don't even > > wear clothes I like because I don't want to put money > > in something I'm > > going to want to throw away later. I used to be a good > > dresser too.... > > My friend gave me some Zantaxs, however you spell that, to > > help with > > the stress but I don't want to bombard myself with > > anymore crap. I > > feel like and AIDS patient, no offense to AIDS patients, > > but with the > > amount of medicine I'm taking, we share a common bond. > > I don' t have > > anything I look forward to anymore accept leaving all this > > behind. > > I'm also probably really depressed due to the > > Ivermectin. > > At work I've stopped caring. At home I've stopped > > caring. Even in my > > friendships and family I've stopped caring. I would > > leave everything > > behind to be free of this. Unfortunately, even if I did > > that, I would > > bring them along. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Dear , I just read your story here and I can so relate... as well as so many of us can because we too have broken down, cried over this mess we are all in and wished for a quick way out of this insanity...just please know that you are not alone in this and there is wonderful support from all who post here. I keep reminding myself that " if God brought us to this, he will bring us through this " so please hang-in there. We have been put through a test like none other and have had to endure the insults from doctors, the isolation from family and friends and the huge expense of trying to get rid of these things. But please remember the good news that many on this site have also gotten past this nightmare; Rita, Joan, Ray, Zmooks and others so we can, too. God Bless you and I will continue praying for you and for all of us. Lady Dee > > For the past couple of days I have felt the urge not to live anymore. > Yesterday when I was coming back from work, I have to cross a busy > interception in the opposite direction and it was at one point I was > hoping one would hit me and this would be all over with. I can't > describe how frustrating this is to a person who has never had this > but I know most of you know. I normally break down crying at least > four times a day now. > My apartment is covered in head to toe in Epsom salt and I bought a > dehumidifier. It doesn't seem to be working. I'm on my six time > taking ivermectin. My eye sight has started to go because of the > sulfur, my throat hurts everyone once in a while from the cleaning > products, and my brain has lost so much intelligence. I don't > understand why there is nothing out there for help. I just don't. I > have a doctor's appointment on Tuesday to get Tetracycline but fear > rejection once again. I only get so many appointments a year and > don't have the money to keep on pumping them out. I'm trying to > commit myself to only this and work but I fear at points it is too > much. My parents have not been much help but I guess I can > understand. My brother has some kind of chromosome disorder causing > seizures so they mostly bothered with him or my sister who is still in > high school. They sent the money for the dehumidifier but I don't > think they can handle anymore emotional drama. Not to mention my mom > won't shut-up about student loans and how I don't want to get bad > credit. I'm going to be honest, I don't fucking care right now. > The thing that sucks most about this is I didn't do anything to get > this. I didn't have sex with 12 random guys in a methlab, didn't > smoke, do drugs, snort glue, and yet here I am, once a perfectly > healthy individual, slowly destroying myself in attempt to free myself > of something that no one will help me with. I once had an IQ of 130, > nice skin, and was a pretty easy going person. Now I fear my brain > will be mush before this is over, think I might have skin cancer on > some moles, and constantly am depressed. Not to mention my new > neighbors already think I'm a nut job. My apartment looks like a meth > lab. I understand their view point but unfortunately I feel I can't > explain the situation. Every once in a while my boyfriend will come > over and suggest I get something like a table or a dresser. I get so > annoyed because it isn't like I don't want those items, I just don't > want another thing to clean. I don't enjoy wall to wall Epsom salt, > sleeping on an air mattress, and riding a bike to work. I don't even > wear clothes I like because I don't want to put money in something I'm > going to want to throw away later. I used to be a good dresser too.... > My friend gave me some Zantaxs, however you spell that, to help with > the stress but I don't want to bombard myself with anymore crap. I > feel like and AIDS patient, no offense to AIDS patients, but with the > amount of medicine I'm taking, we share a common bond. I don' t have > anything I look forward to anymore accept leaving all this behind. > I'm also probably really depressed due to the Ivermectin. > At work I've stopped caring. At home I've stopped caring. Even in my > friendships and family I've stopped caring. I would leave everything > behind to be free of this. Unfortunately, even if I did that, I would > bring them along. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Oh , how I can relate to your description of this so called existence. I too just want to call it quits. This is no living by any means, sheer hell.....if I were an animal I either would be put out of my misery quickly or so many people would come forward to save me as animals in despair gain more attention from the public. Please keep fighting, I know I will for another day, then maybe another day .. M From: ladydee96 <ladydee96@...>Subject: Re: Ventingbird mites Date: Sunday, June 22, 2008, 12:51 AM Dear ,I just read your story here and I can so relate... as well as so many of us can because we too have broken down, cried over this mess we are all in and wished for a quick way out of this insanity...just please know that you are not alone in this and there is wonderful support from all who post here. I keep reminding myself that "if God brought us to this, he will bring us through this" so please hang-in there. We have been put through a test like none other and have had to endure the insults from doctors, the isolation from family and friends and the huge expense of trying to get rid of these things. But please remember the good news that many on this site have also gotten past this nightmare; Rita, Joan, Ray, Zmooks and others so we can, too.God Bless you and I will continue praying for you and for all of us. Lady Dee>> For the past couple of days I have felt the urge not to live anymore.> Yesterday when I was coming back from work, I have to cross a busy> interception in the opposite direction and it was at one point I was> hoping one would hit me and this would be all over with. I can't> describe how frustrating this is to a person who has never had this> but I know most of you know. I normally break down crying at least> four times a day now. > My apartment is covered in head to toe in Epsom salt and I bought a> dehumidifier. It doesn't seem to be working. I'm on my six time> taking ivermectin. My eye sight has started to go because of the> sulfur, my throat hurts everyone once in a while from the cleaning> products, and my brain has lost so much intelligence. I don't> understand why there is nothing out there for help. I just don't. I> have a doctor's appointment on Tuesday to get Tetracycline but fear> rejection once again. I only get so many appointments a year and> don't have the money to keep on pumping them out. I'm trying to> commit myself to only this and work but I fear at points it is too> much. My parents have not been much help but I guess I can> understand. My brother has some kind of chromosome disorder causing> seizures so they mostly bothered with him or my sister who is still in> high school. They sent the money for the dehumidifier but I don't> think they can handle anymore emotional drama. Not to mention my mom> won't shut-up about student loans and how I don't want to get bad> credit. I'm going to be honest, I don't fucking care right now. > The thing that sucks most about this is I didn't do anything to get> this. I didn't have sex with 12 random guys in a methlab, didn't> smoke, do drugs, snort glue, and yet here I am, once a perfectly> healthy individual, slowly destroying myself in attempt to free myself> of something that no one will help me with. I once had an IQ of 130,> nice skin, and was a pretty easy going person. Now I fear my brain> will be mush before this is over, think I might have skin cancer on> some moles, and constantly am depressed. Not to mention my new> neighbors already think I'm a nut job. My apartment looks like a meth> lab. I understand their view point but unfortunately I feel I can't> explain the situation. Every once in a while my boyfriend will come> over and suggest I get something like a table or a dresser. I get so> annoyed because it isn't like I don't want those items, I just don't> want another thing to clean. I don't enjoy wall to wall Epsom salt,> sleeping on an air mattress, and riding a bike to work. I don't even> wear clothes I like because I don't want to put money in something I'm> going to want to throw away later. I used to be a good dresser too....> My friend gave me some Zantaxs, however you spell that, to help with> the stress but I don't want to bombard myself with anymore crap. I> feel like and AIDS patient, no offense to AIDS patients, but with the> amount of medicine I'm taking, we share a common bond. I don' t have> anything I look forward to anymore accept leaving all this behind. > I'm also probably really depressed due to the Ivermectin.> At work I've stopped caring. At home I've stopped caring. Even in my> friendships and family I've stopped caring. I would leave everything> behind to be free of this. Unfortunately, even if I did that, I would> bring them along.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 been there, done that. they will only send her to the psych ward and give her more meds that will make her more depressed, along with the ivermectin. bad combination. at least doesn't have cancer or worse, she could have a stroke like my mom, which left her paralzyed from her breasts, down. no bicycle riding there. no way to get up off the air mattress to go pee. no showers. no swimming. no walking. no way to go to the store. the one thing that is so awful about this, is that regular people who don't have it, they don't understand. like amanda's boyfriend who doesn't understand why her apartment looks the way it does. that's a hard one. you can explain until you are blue in the face, and they still don't get it. "Kathy L." <angeldestiny@...> wrote: You may want to go to emergency and ask for some help there.Kathy Venting> For the past couple of days I have felt the urge not to live anymore.> Yesterday when I was coming back from work, I have to cross a busy> interception in the opposite direction and it was at one point I was> hoping one would hit me and this would be all over with. I can't> describe how frustrating this is to a person who has never had this> but I know most of you know. I normally break down crying at least> four times a day now. > My apartment is covered in head to toe in Epsom salt and I bought a> dehumidifier. It doesn't seem to be working. I'm on my six time> taking ivermectin. My eye sight has started to go because of the> sulfur, my throat hurts everyone once in a while from the cleaning> products, and my brain has lost so much intelligence. I don't> understand why there is nothing out there for help. I just don't. I> have a doctor's appointment on Tuesday to get Tetracycline but fear> rejection once again. I only get so many appointments a year and> don't have the money to keep on pumping them out. I'm trying to> commit myself to only this and work but I fear at points it is too> much. My parents have not been much help but I guess I can> understand. My brother has some kind of chromosome disorder causing> seizures so they mostly bothered with him or my sister who is still in> high school. They sent the money for the dehumidifier but I don't> think they can handle anymore emotional drama. Not to mention my mom> won't shut-up about student loans and how I don't want to get bad> credit. I'm going to be honest, I don't fucking care right now. > The thing that sucks most about this is I didn't do anything to get> this. I didn't have sex with 12 random guys in a methlab, didn't> smoke, do drugs, snort glue, and yet here I am, once a perfectly> healthy individual, slowly destroying myself in attempt to free myself> of something that no one will help me with. I once had an IQ of 130,> nice skin, and was a pretty easy going person. Now I fear my brain> will be mush before this is over, think I might have skin cancer on> some moles, and constantly am depressed. Not to mention my new> neighbors already think I'm a nut job. My apartment looks like a meth> lab. I understand their view point but unfortunately I feel I can't> explain the situation. Every once in a while my boyfriend will come> over and suggest I get something like a table or a dresser. I get so> annoyed because it isn't like I don't want those items, I just don't> want another thing to clean. I don't enjoy wall to wall Epsom salt,> sleeping on an air mattress, and riding a bike to work. I don't even> wear clothes I like because I don't want to put money in something I'm> going to want to throw away later. I used to be a good dresser too....> My friend gave me some Zantaxs, however you spell that, to help with> the stress but I don't want to bombard myself with anymore crap. I> feel like and AIDS patient, no offense to AIDS patients, but with the> amount of medicine I'm taking, we share a common bond. I don' t have> anything I look forward to anymore accept leaving all this behind. > I'm also probably really depressed due to the Ivermectin.> At work I've stopped caring. At home I've stopped caring. Even in my> friendships and family I've stopped caring. I would leave everything> behind to be free of this. Unfortunately, even if I did that, I would> bring them along.> > > > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
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