Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Get an attorney to help you with SS. Look in your ph book to see if you have a free leagal aide service. I don't know what state you reside in. But in Ohio, we have THE BEAUREAU FOR CHILDREN WITH MEDICAL HANDICAPS (BCMH). Their main off is in Columbus. Check with your local health dept to see if YOUR state has BCMH (You will have to speak with the local BCMH coordinator anyway). You may have to explain your situation, and they may call BCMH something different. If you qualify for BCMH, they will pay for most if not all of your daughters medical needs (including hospital stays). I hope this helps. Sue Sweet Sue Ohio For a REALLY HOT time check out http://www.peternoone.com and http://www.mikesmith1964.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 >hI This is terri in responpes to your childhood aduse and the disk diease @chronic fatique i have all of those plus the S>S problems thats me and then some i had my 1st surgery a 3hours old and i have had cancer twice and i'm in stagte 4 liver fauilure (yreatment did not work) but because of all my medical problem and the fact my husband left me when i got sick i still have tpo live with my parents who made me pay for every pennie they had to pay for all my surgery out of hitting me telling me i was worthless and giving me no support at all they married me off when i was 16 and i was no where near ready to be on my own i was slow in school and in the 70 you were just past by so i live with them and they still don't cut me a break at all .but on the up side it yook me 2and a half years to get my S.S going i had to get an attorney and i have full benifits .but i did have almost live on the streets because at the timwe my folk said i could'nt live here because i had no money to pay rent which was $250 and its $300 plus i pay all my own everything but i have a nice little room and two great doggies so you are blessed to have support through this period. i also have all the other problems i listed above i went through trigger shots to nerve blocks the pain was unbearable and i took all the pills to help but in sept they finally inplanted a mrphine pump and that deep pain is almost gone i have gone to the mall 2 times since the pump i hadn't been to the mall in 4 or 5 years plus since the pain level is down i have more energy having to deal with chronic illness is hard i'm45 now and i find it to be a challange now instead of a burden ooo this pump does not get you high in anyway it at a very slow rate so you can funtion day to day keep going to S.S because you will get your benifits and that take a hugh burden off of you ..i have learne d to forgive my abusers he's in his 70 and can't walk and i have a very good counsolor that helps me cope good luck to you and hang in there Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 HI there, I know all too well how frustrating it can be getting a diagnosis. I kept telling my Dr. there was something wrong. I lost 75 lbs in two months. Because I was bigger to begin with, they didn't notice. Half the battle is getting the diagnosis. Because it was 20 years ago and I was only 23, their first course of action was to do a dilitation, now it seems they prefer to do the surgery. I'm sure you are aware of this, but stressing too much makes the symptoms worse. Everything is going to be okay. LIke I said, half the battle is getting the diagnosis. Things will happen a lot quicker from this point on. When is your wedding? Try concentrating on your wedding details and forget about the medical stuff until you actually have to deal with it. I know, easier said then done. I just confirmed with the surgeon I am having a trans-thoracic heller myotomy, which means an open incision myotomy. I am nervous as all hell. I don't know when, they will call 7 days before. So I can relate. I hope all goes well. Keep us posted and send lots of wedding pic. All the best , (Oshawa, ON Canada) cthymunroe <cthymunroe@...> wrote: First off, can I just say how frustrating this month has been. I have been playing phone tag with about three doctors. I have had at least two conversations A DAY with some kind of a doctor. Tuesday was my appoinment with my U of M doctor for my 2nd opinion. I waited 2 hours to finally see him and he said that the x-rays that I brought showed no signs of achalasia. I started crying and He then asked me to come back the next day (2 hour drive) to take another barium swallow. Within 5 min, the doctor looking at the screen said,"My God you do have achalasia." So tomorrow, I find out if I'm having surgery on May 2nd. I now understand how important it was for my U of M doctor to redo my test but I just really can't take this anymore. Since April 12th, I have lost 4 pounds. I can hardly get anything down. I have 5 months until my wedding and I should picking out china and stupid little girly things. Instead, I am spending my time talking to doctors and trying to find things for me to eat. I want to have my surgery and have a speedy and healthy recovery. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Dear Lance, I am happy to hear that you were improving and my heart goes out to you with the complication that have now come up with the insurance company. I hope that it is quickly resolved so that you can start your treatment once again. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Honestly, I would keep the landlord out of it. I don't think they'd understand what they are in for. No one really does unless they get this. It is a constant thing. It isn't something that can go away in a week. I've been working on this for three months now. Yes things have gotten a lot better but I fear it will be at the end of August when this thing is done. I would listen to what other people are saying and stick to a routine and compare weeks; not days. I have noticed a difference when I started treating everything and cleaning on a daily basis. For me the best thing was getting something to help me with the anxiety. I got so frustrated that I would break my routine and lose what I had accomplished. Once you get in the right mind frame to deal with this, things will improve a lot. > > HI ALL, > > I think that the longer you have had it --the harder it is to get rid of??? > > I know they are in my skin....but I can go somewhere and not feel them if I clean my skin > really well. > > An example of this is last night I went to my boyfriend's parents house, I took a jacouzzi, > sprayed myself with Cedarcides's outdoor spray....got many black things out of my skin, > took a benadryl, and did not get bit all night. > > I am sitting in a nylon lawn chair that i sprayed with windex last night ...and i am getting > bit on my upper legs and booty--- > > and when i swab it with a cotton ball soaked in %91 alcohol--there are black specks on the > cotton ball.... > > This sucks! > > We live right across the street from the beach and i dont want to move!!! > > My landlords dont know because i feel like i brought it here...plus i dont want an > exterminator to come and spray pyrethrins---becuase we all know how that goes! > > I almost want to tell them so they will help with this--but I have already been thru the > frustration of pest control guys spraying pyrethrins in my first infected house. > > ugh, LL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 I see you are seeing an ENT in Reston. If it is Dr Bahadori at Otlaryngology Associates you certainly will not have to do any convincing. He is very familiar with and is up on the current research. He actually was the most informed doctor we saw the entire time, includig a Rheum from the NIH. When we went the ENT examined his tonsils (saw they were scarred up), reviewed his history, testing, and records. He also looked at my spreadsheet that detailed all of his fevers, symptoms, temps, and dates. That day we scheduled surgery for a month and a half later. Our initial consult was 30min, surgery was 30 min, so we spent an entire hour with the ENT. We spent countless hours with the immunologist, so really the ENT part was a breeze. There was no further testing that the ENT did, as we had already had all other tests preformed under the sun. By the time we got to the ENT we had exhausted all possible testing. I believe if you decide to maintain the disorder via pharmacuticals, you would probably be refrerred back to your Primary Care or your ID doc. Good Luck! Make sure you have all your records, especially your journal, that is what 's ENT was most interested in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2008 Report Share Posted November 19, 2008 prednisone has been shown to bring the cycles closer. i've heard many say that over time they spread back out again. as for the ENT route, there are a number of posts on the board about how to best prepare for the visit and how to get the ENT to support going down the T & A route. Suggest you get copies of the stuides that are on this board and bring them with you, actually I'd get them to the ENT prior to your visit so he/she can read them in advance. Also bring your fever journal and discuss why you would like to try this.  Regards, Nick Handrinos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2010 Report Share Posted December 6, 2010 I cannot believe how hungry I feel today! Yesterday was not an issue at all, but today all I can do is drink water after water to quell the gurgle in my stomach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2010 Report Share Posted December 6, 2010 Today is only day two, and remember I loaded for three days. I tried previously a week before Thanksgiving, loaded two days and got two days in before I gave up. Today is just as bad. I haven't been drinking any cold drinks at all, I drink my water at room temp. I fill two bottles from the PUR filter and when one is empty refill it. I've had four today, which is normally a daily max for me. They are liter bottles. I am taking hhcg sl 6 drops 6x day, as per the directions. My niece tells me she never felt hungry at all, but I wasn't all that hungry at 23 either! Part of the problem is I am a WAHM, mother of 7, three still at home. It's hard to make their dinner and not lose control. They cook themselves a lot, but I feel guilty for not doing it for them and enjoying it together. My husband absolutely hates that I am doing this. He is a trained chef and refuses to cook until I am done with the diet. I am so torn between giving up and continuing. I have issues with the severe limitation in allowed food choices and 500 cals a day isn't very much at all! Then if the drops aren't kicking in and suppressing the appetite..... It just doesn't give me much hope!! > > Can't remember, sorry... but what VLCD day are you on? And what is your > dose? > > While water really dose help, so does sipping warm broth. Warm liquids seem > to be more satisfying and filling than cold. something that was presented to > me recently, was drinking *hot* water. Weird sounding I know. But I've tried > it, just a cup/mug at a time and it really does work and isn't bad either. > What drinking hot water is essentially for is opening up your lymph system > so it can drain properly and help keeps you healthy. Works very well for > that as a bonus but it also helps keep you satisfied. > Good Luck~ > > Terri Randall > Creature Comforts > Sheridan, WY. > www.GotPaws.net > APS List Owner > > > frustration > > I cannot believe how hungry I feel today! Yesterday was not an issue at > all, but today all I can do is drink water after water to quell the gurgle > in my stomach. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2010 Report Share Posted December 6, 2010 Terri, I've changed my reminders to 3x day. I'll give it a whirl tomorrow and see how it goes! Thanks, > > Ah... I do remember now, thank you! Honestly.... I think your dose is too > high. Many people that do HHCG find the higher dose such as you're taking > causes them a lot of hunger. A much better dose is 6 drops three times a > day! Works great for almost everyone I know. so that means you're taking > twice that much and with HCG/HHCG, less is more and more leads to hunger. > > I know it has to be tough being a WAHM! And even more so with a chef for > your hubby! YIKES!! > > If you do decide to continue, try dropping your dose for a few days and see > if your hunger doesn't subside. I do wish you the best of luck whatever you > decide! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2010 Report Share Posted December 6, 2010 Good Luck! Terri Randall Creature Comforts Sheridan, WY. www.GotPaws.net APS List Owner Re: frustration Terri, I've changed my reminders to 3x day. I'll give it a whirl tomorrow and see how it goes! Thanks, > > Ah... I do remember now, thank you! Honestly.... I think your dose is too > high. Many people that do HHCG find the higher dose such as you're taking > causes them a lot of hunger. A much better dose is 6 drops three times a > day! Works great for almost everyone I know. so that means you're taking > twice that much and with HCG/HHCG, less is more and more leads to hunger. > > I know it has to be tough being a WAHM! And even more so with a chef for > your hubby! YIKES!! > > If you do decide to continue, try dropping your dose for a few days and see > if your hunger doesn't subside. I do wish you the best of luck whatever you > decide! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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