DancingLight

Rita, I take mine after lunch... I don't know what to tell you in terms of switching the time. For those who get nausea as a side effect they often do worse taking the pill in the morning. There's no reason you have to switch now while messing with other stuff. I always, say, go with your gut and also try to keep the number of variables you are messing with at one time to a minimum so you know what's doing what! You don't have to switch times at the beginning of a pack, you can do it any time. You can also just sort of gradually work on changing the time of day when you are ready. (i.e. when you are ready to see if time of day matters, try lunchtime, for a few days, then try dinner time...etc.) Sorry I don't have a clearer answer...I'm going from just learning about this over the years not a lot of solid medical evidence. I just know that we taught the young girls at the clinic that sometimes mornings were harder in terms of nausea etc. Lauren, So funny...you just asked ME the exact questions I thought I was asking you but I must not have been clear! Sorry. That is what I was wondering....what you asked. B/c I don't care about pregnancy protection, I just care that I get the hormones. I do have much more breakthrough bleeding on the abx, but also b/c I suppress my periods. If you get an answer let me know! I wonder if the NuvaRing would be a better choice? Would that make us absorb the hormones better, if what flop said is true. B/c the NuvaRing doesn't go through the gut. My ANS doctor and I just talked about switching to it for a different reason (no milk in it) but he said he'd had mixed results from patients using it--but he didn't expand on that in his email, so I wanted to follow up with him more before making the switch. Food for thought, I suppose... Okay, MUST lie down. Emily P.S. WAIT...so are those of you talking about the pill acting like florinef saying that it has nothing to do with hormones for us????? I'm so confused.

Lauren, That is good news. I have tried to stop the pill too and it was so bad, I went back on it. And, you know I just recently tried to have a period and it was HORRIBLE! The hormones definitely do something...maybe something we don't understand yet. I feel strongly about this b/c so many folks on the board have taken the pill and seen such improvments. You needed this bit of strength! Yeah! Can you explain more about why you stopped the B/C? My lyme doctor never said anything about this to me? I'm not sexually active, so having 'protection' is not an issue (as I know abx can interfere with this part of the pill), but was he referring to it not being 'effective' in other ways? Like not getting the right amount of hormones? Rachel, So many of us have had a lot of relief with taking the pill. I'm heading to dinner, but maybe try a search? If you don't get anywhere, let me know and I'll see if I can find some old posts. This topic has come up a lot, so you might not get the level of responses you might like to make an informed decision. Try typing in as a topic search--oral contraceptives, birth control, the pill, period, 'that time of month'--see if it gets you anywhere. You can even try a post search under my name DancingLight for Alesse and see if it leads you to a thread on this topic....also, maybe just 'hormones' would bring up one of the discussions. Don't know if this will help. But I would say that soooo many of us do better on the pill. Rita, Sorry that re-starting the pill is so hard for you. One little 'trick' I learned in teaching about taking the pill is that sometimes just the time of day we take it can make a difference in side effects. Are you taking it in the morning or evening? Just switching this could possibly lessen something like nausea. See if perhaps this helps with it interferring with your sleep also? It's worth a shot. Later alligators! Emily

Rachel, After all of that I would begin to wonder if I was meant to see that doctor! Or if there is a sign you're not supposed to! Geez! I am sooooo sorry. I had my PCP do this to me once--saying they needed to make room for acute care patients that day and there was nothing he could do for me anyways. It turned out to be a big miscommunication and he called me on the phone, apologized and talked through what I needed. That's the closest I've come to something like that happen to me. I really don't have an answer for you, but thought I'd chime in with a HUG b/c you hold all of us up, so now we'll hold you up! Is this a doctor you have heard good things about? I wasn't quite clear from your post... Still, I would at least give a call to the office. It sounds like, unfortunately, to see this doctor (who may himself be a gem) you are going to have to go through an office staff that is a pain in the tooshie. You could ask to speak to the office manager (rather than the receptionist) or to speak to a nurse. Tell them you do not understand why they cancelled your appt., that you really want to see if you can make seeing this doctor possible, etc? Say you have a right to schedule an appt! All I can say is try, try, again if you really want to see this doctor. You may have to put on your 'tough skin' to deal with the office staff. They sound like the real challenge. I konw that I LOVE my PCP but the office staff....grrrrr....red tape, red tape, red tape AND miscommunications right and left. They may have made the decision without even consulting the doctor!!!!!! My problem is that when I'm angry or upset, I cry and it is soooo hard b/c I'm trying to be tough and assertive on the phone and then all I want to do is cry! Let us know if you have any luck....I don't have any magic words of wisdom. Emily

Thanks, Sophia...a little sigh of relief can be uttered at that news. Still big hurdles for our Pooh. LOVED your picture and poem. Is that an old Irish saying? I forget. I just know how much I love it. Emily

Patti, So, I have several podcasts on my iTunes, and it just so happened that one of them that I actually hadn't planned to listen to was from January, which was cervical cancer awareness month. After your post, I decided to give it a listen tonight. I LOVE this stuff. I used to do sex education stuff on campus and did an internship at a family planning clinic, so it was a good refresher course for me, since it's been a few years since I did this! Tha entire podcast was on cervical cancer--prevention, detection, the vaccine, etc. It was VERY good and helpful. Do you have the ability to stream shows on your computer or do podcasts? Or can one of your 'hip young sons' or Chrissy podcast it for you to listen to? If so, let me know. Otherwise, let me know if you can't...and I will type up as much as I can remember from it. I just can't right now b/c I feel really sick. Sorry. It was a podcast of a show from our NPR station with interviews from 1. the chief of gynecologic oncology at Hershey Medical Center in PA and, 2. a microbiology professor and cervical cancer researcher at Hershey. I was reminded of many things I already knew, and also learned some new things. If anything, it was a good 'refresher course' so that I could be more accurate in my comments on the board about cervical cancer, sexual activity, the vaccine (which btw, there is ANOTHER one coming out soon by Glaxo Smith Kline--the current one is by Merck) and HPV. Is Chrissy able to be honest with you or her doctor about her 'risk factors'--which really come down to sexual activity? From listening to the podcast, and what I have heard mostly before is that this is the BIG reason for the vaccine and most common way to get HPV. Once you have HPV you have it...but if you get the vaccine you don't get it. Right now it is FDA approved for ages 9-26. (The social and political controversy surrounding this and whether to require it for school children is fascinating, but not really relevant to your question!) I do not know what strain Nina has or even if the vaccine would have protected against the one she has (Do you know Nina?). The vaccine only protects against 2 or the 15 strains out there (however these strains account for at least 70% of cervical cancers). Neither doctor mentioned other ways of getting HPV other than sexual activity as the big culprit. Number of sexual partners and age of first intercourse are considered in evaluating risk for contracting HPV. Nina, you just might have been incredibly unlucky!!! Cervical cancer is the third most common type of gynecologic cancer in women. The first doctor interviewed did not even really mention the vaccine. He really emphasized the importance of regular pap smears. He said that if we all did this we could virtually eliminate cervical cancer. Paps are THE most important thing. (One fear is taht women who get the vaccine will stop getting paps). 50% of women with cervical cancer are women who never had a pap test. Paps, as we know are NOT preventative of cervical cancer, but they are a fantastic screening tool and really mean that we can tackle this cancer if women get theirs yearly (or more frequently as in Nina's case). He discussed HPV and the link to sexual activity. The second person interviewed, the professor, focused more on the vaccine. It seems to be effective against 70% of cervical cancers--b/c most are caused by the 2 strains it protects against. He was able to explain how the vaccine is made. (Sorry, but I just didn't quite get the microbiology of it!) He basically said the way we get HPV is through sexual intercourse. The vaccine is very exciting. He talked about the other one coming out by Glaxo, the age limits on it (9-26) (so, DizzyGirl, you are almost past the time the FDA has approved it for, but it is questionable WHY the FDA has not approved it for women past age 26. The most important time to be protected is under age 30--and this is when Paps are most crucial. As I've said before, cervical cancer is typically a young woman's cancer (ages 18-34). Anyways, I guess after listening to the podcast I wasn't convinced yet to go for the vaccine b/c it JUST came out this past summer. And there is a new one coming out. I would get the vaccine if I was younger and sexually active--maybe. I am not sexually active and have no risk of getting HPV so for me it seems like there is no reason to get it--plus I'm over 30. I'm not sharing towels and bathing suits with anyone so even if there is a risk of getting it that way, hopefully I won't get it. Although public bathrooms still freak me out! For me, there doesn't seem to be a cut and dry answer. Plus, if Chrissy's already struggling right now so much, maybe now isn't the time to add anything else into the mix? Honestly, I believe strongly that this is a very personal decision and mostly based on sexual activity. This is what I believed before the program and believe even more now after listening to it. Whoops, I didn't mean to keep typing. I get so passionate about this stuff. Plus, I'd probably forget everything from the program by morning anyways! I really hope this helps you some. I respect Dr. Grubb a lot, but I guess that I don't feel that there is a cut and dry answer for this vaccine at this point in terms of recommending it across the board for all of his young female patients. We may get to the point in time that we require it of school age girls simply b/c they ARE having sex and we can prevent HPV by doing so, but that isn't the case right now. I certainly don't want to minimize cervical cancer or the risk of getting it. But, I do think there are clear pros and cons at this point to getting the vaccine vs. sticking to regular paps. BallroomA has it at age 19, but no HPV...so there's an unusual case in and of itself that it wasn't caused by HPV. There are always going to be those exceptions... Chrissy is 21 and she has the freedom to make this choice for herself and what is best for her body and her belief system. You're a great mom, and I think your gut was right to question. Btw, thanks for the sweet, sweet post under the topic about the documentary and caregiving and guilt. Probably, another topic for another thread for another day. I think for my mom, she doesn't have the support you do--she is a single mom and her close friends RAN the other way when I got sick. Nice, I know. She's also just overhwlemed b/w work and taking care of me, so it doesn't leave time for her to meet folks. She went out tonight to the movies and dinner with a friend....YEAH! Later alligator! Emily

Patti, That is a really interesting question. I really try to stay away from vaccines as much as possible... This debate reminds me a little of the flu vaccine debate--i.e. my doctor is against getting flu vaccine, dr. grubb is for. They are both top specialists in the country. However, HPV and Cervical cancer are a bit more to deal with than the flu! I don't have an answer, but I don't know if I would feel 'urgency' to rush into getting the vaccine. It is so new. Nina's point about getting HPV before becoming sexually active is interesting. (I'm sorry Nina that it is another thing you have to deal with. I am thankful that for you it was DETECTED since most women go without knowing they have it. And, you are very careful about staying 'up' on your check ups) However, I wonder how common that is? I think the biggest reason doctors are pushing it is because of the sexual activity of young women. (i.e. possibly having schools require the vaccine, etc.) I've not had my ob/gyn even bring this up with me, or my PCP who I JUST had a physical with. In my humble opinion, if Chrissy has a good ob/gyn and is not sexually active, I'd wait and really have a discussion about the pros and cons of the vaccine with the gyn who would hopefully know more about Chrissy's risk, etc. than Dr. Grubb. I feel like you have time to 'sit with it' for a bit.... Emily

Ugh! That sounds miserable.... Why would they put it through all of that breast tissue? She really must feel 'beat up'....Ugh. Sorry she is struggling so....still in my thoughts Pooh... Em

Karen, You are VERY right about that statement. Thank you for stating that. That's why it's so hard for those of us who talk to her frequently not to worry when we don't hear from her--I start thinking OH NO she's back at l'hopital or is just plain miserable, even though she is at home. Melissa's reality is that she has a very scary and tough road ahead of her and every day is a fight for her life. Emily P.S. Thanks all for your support...I really always feel like poo...but it's just been extra bad lately! Trying NOT to whine, but I let it slip. As Morgan would say, please call Whine-1-1!!!!!

Thanks Sophia, For me, even trying to recline, being on the computer is too much some days and even on good days, just a short bit at a time. So, I really appreciate your efforts... It's a bit like whisper down the alley with Pooh, eh? At least we are getting some news...it helps a lot. And I think all the prayers and group thoughts help...I know that when I couldn't log on to the computer but Merrill or someone would post updates about me, just knowing that so many people cared and were thinking of me kept me going. LOVE SUSTAINS. This I believe. Maybe I should write an essay for the NPR series? Okay, off topic... I think it is completely understandable that Pooh is really blue--I'm blue and I'm no where near how she's feeling right now! How can she not be down with all that she is going through? Her poor body...I am sending my good thoughts and energy. When she is able to talk on the phone, please relay to her how much she is cared about and how much she is cherished. Emily

I am going crazy to find out as well!!!! I heard a tidbit that she is doing okay...but that is all...I have been leaving her vms, but we haven't gotten to chat. I've missed that so much... I've been feeling like pooh myself, so not been much good to Melissa in that sense of calling and such... I will update when I hear news....or whomever hears from her first will give the latest scoop! Em

Amy! You must have ESP! I was getting ready to post 'where is everyone' (i.e. Calypso) and several other folks who have been 'missing'. I am glad to hear that the reason you are away is b/c you are feeling GOOD. It seems so many folks are having a horrible start to 2007. I was really wondering how you were doing b/c I know the beginning of the pregnancy was so rough. I had been really worried since I had not seen you pop up for a while. I cannot believe how time flies. Do you really only have two months left??? Wow! Thank you so much for checking in. Are you keeping it a surprise as to whether it is a boy or a girl? It seems all of my friends these days want it to be a surprise--at least the women do. Their husbands, on the other hand, want to know! I say the pregnant one gets to make that call! Emily

Oh Sophia, That is good news. I know she still has a long road, but so grateful the surgery went as planned and she got to keep her ovaries. I just logged on before hitting the hay, and this was good news to hear. Thank you for keeping us up to date. I wasn't even sure how you would find out how she was doing post-surgery if she wasn't up to calling anyone. Emily

anxiety can certainly be a side effect. mine was out of control... you might find it helpful to read other folks' experiences with the med--just type in 'florinef' as a TOPIC search. emily

Thank you Sophia!!!! I will be thinking of Pooh EXTRA tomorrow.... Your work in keeping us updated is much appreciated--I know it takes a lot of energy on everyone's part. Emily

Pat, www.medicalert.org Also, if you do a search for 'medicl bracelets' or 'medic alert' or just 'bracelets' in the topic title you will get TONS of hits--this is a popular topic. It will help you choose what you want to put on your bracelet as well as learn about how to get 'pretty beaded bracelets' like many of us have done with our original medic alert one. Emily

Sophia, Thank you so much for updating us on Pooh...It is REALLY appreciated. I will keep checking back for updates. I know she has so much going on. Glad she did get an answer about the ovaries and what to do. I am so worried about her. I've had such a hard time praying lately, but I was able to say a prayer for her tonight. Peace, Love and Healing to you Pooh. Love, Em

Nina! Yes, I am peeking at my bracelet right now and I also have the Drug Allergies on it. As well as Allergic to Sulfa Drugs b/c supposedly that's one of the first one's they might give. And also Dysautonomia. They are supposed to call though given all my info! Em

Corina, Did your bp stay stable??? That is probably why you didn't faint and why your diagnosis is POTS not NMH or another category (or more than one diagnosis). Just a thought????? Emily

Many of us with POTS or other illness grouped under the OI category choose to say we have either Dysautonomia or Autonomic Nervous System Dysfunction when we go to the ER or a new doctor. I have Dysautonomia on my MedicAlert bracelet b/c really they just need to know NOTHING is regulated properly!!!!!!!!! So, the need to focus on that! Emily

So, people with 'just hypotension' without the word orthostatic in front of it...that means that they are asymptomatic whereas someone with orthostatic hypotension is symptomatic of OI? Am I getting that right? i.e. I have two friends with very low bp who show no signs of problems--only time it bothers them is if, say, they try to get out of bed and go for a run in the morning or if they have surgery or something. Otherwise, they function normally--my one friend could run marathons around most anyone with her energy level. Okay, as for the OI...I look at it as an overarching/umbrella term also. I have Neurally Mediated Hypotension AND POTS, like Duecykub. I had the increase in HR and the sudden drop in BP on my TTT, which according to my ANS doc means I have BOTH conditions. This is one thing that I was thinking about for the video too...how do we explain all these things? It's so confusing. I hope doctors start to use the over-arching term of dysautonmia or Autonomic Nervous System dysfunction....THEN, recognize that there are sub groups within that. hmmmmmmmmmmmmmmmmmmmmmmmm......food for thought. Emily

Amy, I forgot to mention that if you really want the gory details and why/how I've made the decisions I've made--feel free to check out my blog at www.adancinglight.blogspot.com Emily

Amy, I'm headed to bed, but saw your post so wanted to respond before my Lymebrain lost track of it! It sounds like you had a very thorough exam and the doctor really took everything into account. The only thing I 'disagree' with that he said, is that from my understanding, you are MORE likely to have a positive test as you progress with treatment. Many people with chronic Lyme actually test negative, and that is the tricky part of the diagnosis and what makes it so controversial. I am actually getting ready to do another blood test from Stonybrook to see if we get a stronger positive now that I have been on abx for a while. As for abx., I am very conservative and I don't want to sound like a broken record, but I strongly advocate for taking things slowly and not overwhelming our bodies. That being said, each of us is VERY different. I could not even tolerate a PICC line when I needed it most. I herxed and ended up in the ER on a very low dose of Doxy and we had to start all over again. I've mentioned this before I think, so don't want to repeat myself. Basically, my docs see IV abx as a no go for me b/c I just TOO SICK to tolerate them. Weird, but it's the case. It's hard b/c while I don't like to 'compare' suffering, when I share my story I think it is important to remember how long and how sick I have been--even my doctors are sort of blown away...so I don't want others to make decisions based on my crazy body. As for me, I re-started abx at 1 minocycline/week back in May of 2006 and am just now at 3x a week. I also take 1 pediatric dose of Malarone a day and just started a low dose of Plaquenil. You must choose the path that is right for you. We each walk in our own shoes. I wish you the best and hope for healing. Remember, you have been sick for a long time, and we cannot heal overnight. Patience is all we can hold onto right now! Emily

Rachel! Sinus rinses are my mom's new favorite thing....I know they seem gross but they are good. Also, the sprays really 'clear things out' if you spray with your head tilted and then blow and blow! Gross! Wareagle....just checking in on you to see if you are still feeling like pooh???? I hope not. Chickensoupmorgan had it right---chicken soup is Jewish Penicillan (ummm, morgan are you taking any hints from this?????) Em

Oooh, I'm on a posting roll tonight....but this will be my last! Must crash! Anyways, glad you posted this. I subscribe to the CFIDS journal (mostly to donate to that charity seeing as I can't really read it anyways, but I do scan the titles and such). Anyways, I know that for YEARS they have been debating what to do with the name and whether or not to change it. Fatigue is sooo not enough to describe it, yet, changing the name when we know so little about the illness at this point is a challenge also. Perhaps they will begin over the years to use ME and phase out the CFS part--like they have begun to do with EDS--instead of saying EDS Type III it's Hypermobility Type of EDS. For those of you wanting to get more scoop, my guess is that the website for the CFIDS Association of America would have a lot of the scoop. Their president Kimberly McCleary has been an amazing spokeswoman and advocate. Emily

Stacey, Wondering how your appt went?? Hoping so much that it was helpful! If not, I hope you will be able to go to the doctor Gena sees and have someone really try to help you!!!!! Thinking of you, Em