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Linda You said "I was taken off of my anti-depressant last year (and I haven't felt good since)" Is there a reason you can't go back on the antidepressant thta you felt better on? My D take about 8-9 meds a day. I think people should do whatever makes them feel better - drugs or no drugs. There are no brownie points in life for being "natural" - nor is it necessarily healthier. Herbs are medications too - just less regulated. Reality is sometimes "mother nature" is wrong and I hope people don't feel guilty about fixing it. Louise

Rachel and I will be at the Hillcrest meeting. Louise

Hi I work June 24 ( every other Sat) but I am available all Sundays Louise

Hi Linda. I am sorry to hear how bad things are for you. I wish I had known you were at CCF - I have been there for the past 2 days interviewing for a job in gyn-onc. I could have visited!! Hope things improve soon. Louise

Melissa I am sorry to hear how rough things are for you. If you are losing weight I would be happy to see if we can arrange a "fat transplant" from me to you!!!! Louise

Nina There are certainly women for whom that even the paps are really painful - some even faint. It is really rare though. - I don't want people thinking paps or even colpo is that painful for most. I have women come in shaking and crying they are so scared. For most - it is just an unpleasant procedure/awkward position. I have only done one colpo on someone with a dysautonomia - though she did not tell me that before we started unfortunately!! She did faint. I have no doubt that these procedures are much harder on women with dysautonomias. It is definitely not some thing that you have control over. Louise

As someone who does colposcopy; sedation is unnecessary for the vast majority of people. When I do colpo, it takes 10 min max; 1-2 min may cause severe menstrual cramps. Most people don't feel much with the actual biopsies (actually many don't feel them at all), it is the endocervical sampling that cause the cramping. Numbing the cervix is actually more painful than the procedure. Maybe 2x year, does someone need sedation. I do hundreds of colpos. I think a lot depends on the atmosphere the procedure is done in. I am very relaxed - this is not open heart surgery and you can tell just looking at the cervix that cancer is not an issue. I actually have to stop sometimes because I get people laughing so much!! Louise

Remember health care professionals are humans first - that means that they can have off days, personal problems that interfere etc. If he has alwasy been understanding - give him a second chance. We all have our days (or weeks) when we are just not at our best. Louise

Have you switch brands of midodrine? Rachel can only use one brand of the generic (Mylan -white pills). The pink (can't remember manufacter) make her much sicker. Brand can really matter with midodrine. If in doubt try the brand name not generic. Louise

Babs Where in Ohio are you? Not all "specialists" are equal. If you are in Ohio, it might be worth while to make an appt with Blair Grubb at Medical College (university?) of Ohio. It would take 6-9 months to see him, but it is worth while. Unless you have tried alot drugs already - your current doc is wrong. We also saw local specialists (Cleveland area-University Hospitals) and they did not offer much help drug wise either. As to homeopathic - I admit I am not impress at most of what alternative medicine offers clinically, though at least the people tend to be nice compared to traditional medicine. Louise

Jan My daughter, Rachel, has also started on mestinon (from Grubb) just the way you have started. She started with a 1/4 tab a day and will increase the same way you are. We have noticed that she does not tolerate most drugs if started at full dosing. Actually, she usually stays at the low end of most drugs permanently. Louise

Lisa Rachel made sure not to have a snack less than 2 hours before bedtime last night - hopefully that will help. Emily here is a link with some info on ramelteon - it is very new. http://www.medicalnewstoday.com/medicalnews.php?newsid=27882 Louise

Melissa Congratulations - Rachel is finishing up one class now as well. I completely understand about only being able to do classwork and nothing else. By the end of last semester, Rachel did not even leave her room for dinner! She finished her other classes with an A including college physics (26 started the class and only 8 finished!!) I am sure your friend will understand any mess. You need some time to hang out with a friend as well. Good luck with next semester. Louise

One of Rachel's new meds is ramelteon - to help with sleep. She has tried it for 2 nights and while she felt very relaxed she really didn't sleep much. Normally, she takes 2 - 3mg melatonin - but that wasn't working well anymore either. Anyone else with much experience with ramelteon? A good nights sleep would help her alot. Thanks Louise

Jen202 I am a nurse midwife who does gyn only. The only BCP with a specific diuretic action is yasmin. Loestrin 1/20 is a standard bcp - no special restrictions. Actually, except for yasmin, all BCP are bascially equally safe and effective. The may issue with yasmin is drug interaction that are unique to its progesterone. On an individual basis, if you feel good on a pill and have no contraindications for pills in general, it is the right one for you. I would like to see research about Loestrin and a link to hormonal problems in younger women. I doubt it exists. It has the same combination of hormones as many other pills. Is there a like to the site claiming hormonal problems in younger women? Louise

Lisa Congratulations!!!! I can't tell you how happy I am for you. Rachel is starting that process too. She has POTS, NMH, CFS & IBS and we live in Ohio too. Any tips that you can offer? Louise

Hi Patti We saw Bev on Fri!! We loved her. Rachel tried adderal last year but it made her extremely depressed and she lost a ton of weight. It was a nightmare for her - but have Crissy try it. Everyone is different. We left with new prescriptions for provigil (fatigue), mestinon(OI), cerefolin(cognitve) and remulen (sleep,?sp). Rachel won't start anything new until after jan 1 - New insurance starts then and some of these meds need preapproval. Louise

Shivvr My daughter Rachel has been ill since 13 ( and she is 18 today!!!). I am glad that you have been able to maintain some friends - must be a guy thing. Seems like most girls have friends that disappear. It is a nightmare at times. Rachel and I use to hike up mountains, she studied both violin and piano, was constantly moving. Now - just works on schoolwork through online classes. During the school year, she really does not even have time for TV. It completely *****. I am a single mom and the bills are tough. Have you thought of applying for SSI? You are old enough that yourfamily's income is not a factor and it would give you a little money. We will start that process within the month. Are you taking classes at the HS or at home? Good luck - how you feel is normal for a bad situation. Louise i

((Patti)) and ((Chrissy)) I think calling him a jerk is too nice!! I would let Chrissy do it her way and see what happens. Is Chrissy ok with an "I"? At 70, he is not likely to change and as long as he complys with her accommodations, no laws are broken. BUT after she is done with the class, Chrissy might want to write a letter of complaint. She might also want to write a letter then to the prof - and explain another viewpoint about disabled students. that just because they take longer to complete their education, doesn't mean that they don't belong there. In fact, they need professional level educations to support themselves even more then healthy people. Neither Chrissy or Rachel will be standing all day on an assembly line. With a professional education, even if they have to work part time they should be able to support themselves. Also, if a person's body is failing, at least let them use what they have left - their mind. When we were visiting colleges, I arranged meetings with the disabilities offices. At one college (Rachel 1st choice until then - Juniata College in PA), the DISABILITY PERSON told Rachel she did not see how Rachel could possibly go tot college with her disability!!!! THis happened before I was invited to enter the room. When I was invited in I could tell something was wrong - Rachel looked awful. This idiot then went on to complain about the expectations of students with disabilities etc. I was in shock. I held my tongue because I did not know what had already happened. She also went on to complain about students with GEDs who think they can handle college. (I have a GED and then 8 years of college- straight A's) Rachel was amazed that I didn't reach over and strangle her. So unfortunately these thing do happen. Good luck - I have be meaning to email you but it has been hectic here. Louise

(((Zoe))) I am also a nursemidwife. I think that working around babies while mourning the loss of one is always hard. I have many patients who have had abortions - for many reasons. I rarely see women grieving their decision to have an abortion but I do see them grieving the situation that led the the decision. The gravely ill baby, health problems, the partner who left. poverty whatever. I suspect that know that you made the right decision but you wish it hadn't been that way. Louise

Hi Patti I work full time and am a single mom. It can be done. One suggestion that I have is work some weekends/longer days since time off during the week is useful. I work 12 hours every Tues and every other Sat. I never work Wed. I try to schedule most things on Wed. Rachel doesn't really go the the Dr much. I also use my PTO for needed days off - my work has been great about it (I've been there 10years so I get about 23 days PTO a year). I would say that I call off 5 days a year at most. It is hard for me - especially when she has a rough night and I have to get up at 6am for work. I did break into tears one day and had to leave early once when she was really bad. I have to work - I am the sole income. Louise

Traci Good luck!!! I am hoping to get Rachel tested the ganglionic acetylcholine anitibody. I really, really hope this works for you. Louise

Melissa YES YES YES! Both Rachel and I would love that. She would not be able to do it until after classes are done. I work a 12 hour shift on Tues - so that day is out for me ( I have to drive Rachel). I also work every other Sat (this Sat, Dec 3 is my off Sat). Early Jan is a pretty calm time for us - before school starts up again. We are in Cleveland Heights. Great idea. Louise

Ramakentesh, Thank you for posting this. Rachel was on accutane just before she got sick!!!! Where is Dr Murray Esler located? Louise

Rita Congratulations!!! It is great that you have used your limited energy to help others. Louise