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DancingLight

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  1. Wow, thank you to all of your for your amazing support. Melissa--I was gonna tell you you couldn't vote in this poll! Haha. I figured you'd have the highest number of meds. Ernie--that's a good plan you have...I'd like you to stick around! My ANS doc did say that going off all of my meds would be disasterous so he didn't see options like Mayo or Vandy as feasible for me. Flop--I may right down the tally and show it to my PCP, that was my thought if I got enough votes and responses to see if I could get a sense of things. Mack's Mom--I wish I could fire her, but I really can't--Medical Assistance locks you into a PCP in an HMO set-up. I chose this PCP after my last awesome one left last year. I miss him so much. So far, I thought I really liked this doc, but she disappointed me so much yesterday. I just felt so invalidated and you all validated me...especially those of you who know how darned hard I've worked to try to get treatment and some sort of functioning. I forgot to add that when I asked for a referral to an endocrinologist, she said she wouldn't do the referral unless I agreed to go off of one of my meds!? She said that doctors give us pills to fix things and anybody I went to would give me another med to take. Luckily, I bargained with her, got the appt. adn didn't have to stop any meds. Melissa--I think you hit the nail on the head that she is so new in this with me and the other docs have been treating me for years, so it seems somewhat out of place. I also agree that it would have been much less offensive if she would have said, 'Help me to understand what this med is for." Like Corgard--no, most 32 year olds don't take that, but it's a first line treatment for Dysautonomia (and one of the meds she questioned). I guess my point is....THANK YOU FOR YOUR SUPPORT AND FOR TAKING THE POLL. It really helps put things back into perspective. Emily
  2. Hello all! Welcome newbies and hello oldies! I haven't posted in a very long time, but am curious about this topic... I had a difficult appointment with my PCP today. My other doctors know that I am on a lot of medications and I think we all feel that we haven't had a lot of other choices. We've done the best we can with what we are dealing with. I am being treated for two major conditions: ANS dysfunction and Chronic Lyme, both of which require a bit of a 'cocktail' of meds! I don't like that I take so many medications but I felt that my doctor didn't quite 'get it' and was invalidating both myself and my other doctors decisions. She tried to compare me to 'other 32 year olds'. She went through my medication list and said which meds a 32 year old might be taking and which meds they wouldn't be. Of course, I'm not typical!!!!! The reason I want to do this poll is to see if others who are dealing with serious chronic illness are also on a long list of medications. I was looking to see if I was more the norm than the exception or if I was way out there in the med department. I do read poeple's information at the bottom of their names and know that others are on multiple meds. Just thought a poll might quantify it a bit. I am not including non-prescription stuff like vitamins, probiotics, tylenol, etc. but I am including things like say, prescription pain patches.
  3. Rachel and Lisa! What a great picture and I'm so glad you got to go on an outing together...must be nice to be together and just 'get' everything the other needs/is going through in the POTS department when going to such an event! It's so amazing how you two found each other and you had someone in KY waiting for you, Rachel. I know it is a huge move to make to begin with, but it's made extra hard with all of the health issues. I have been thinking about you since the move and hoping you had been able to move off of the couch after all of that exhaustion...and voila! here's a pic of an outing! Yeah! Take care to both of you! Emily
  4. Happy Belated (by 44 minutes) Birthday to Katherine! Katherine has been such a source of continuous support on this board since its inception, as well as taking charge of the Faces of DINET page. Katherine is one of the 'oldies' of the board, who continues to offer empathy, compassion and wisdom to newbies and oldies alike. Thank you Katherine, for all that you have given to me over these many years, and for all that you have given to so many other son this forum. Wishing you all the best in this new decade! Emily
  5. Nice and simple....I put it on my blog! Thanks!
  6. Amen to everyone's answers!!!!! I couldn't say any of it better! We all wish we could 'ignore' this darned thing and be out living 'normal' lives...but that isn't how this illness works!!! In reality, being planful and ritualized actually makes us MORE able to succeed at going out and doing things I think...or at least having that possibility. Ya know? What everyone wrote was so great and so reassuring. emily
  7. Sara, Definitely not too much information! It's interesting to hear other folks' experience with this. I have never done it myself, but I taught about it a lot! You are definitely being smart to use this as a back-up b/c when done correctly it is actually very effective...now if we can jsut figure out why you aren't getting the cyclic temps you are looking for right? Do you have a good OB/GYN who might shed light on this? I'm glad other folks had some input for you! Ah, yes, our bodies...we love them! LOL. emily
  8. corina, i think that was a great perspective you gave, even with your brain fog! i think chronic illness is such an incredilby life changing experience--one that most individuals do not experience early in life as we have...so it is helpful to have support to help us to adapt and change. our dreams are often shattered in ways we never expected and others our age our living out their lives in ways we had hoped we would be living ours. chronic illness is a life-changing event for not only ourselves, but all of our family and friends. i am glad to hear you have such a great team helping you with the rehab--what a great holisitc approach. emily
  9. I heard the study reported about on NPR. The commentary lead me to believe that the study was done with a very small subject group and was only a beginning step in seeing whether or not this is even a possibility for women. The percentage of women on or off of anti-depressants who suffer from sexual dysfunction is very high... I was not quite totally awake when I heard the study, but my understanding was that although the results were considered 'significant' they weren't necessarily considered to be significant in a way that would impact a lot of women's sex lives for the better. The urging seemed to be to replicate and seek more information at this point. Wellbutrin is known as an anti-depressant that does NOT cause sexual side effects and this is why some women choose this medication over others, however, we don't all tolerate this med! You can always ask your doctor, but I don't think docs are going to be prescribing Viagra anytime soon based on this one small study. Here's hoping for better answers soon! Emily
  10. tearose, do you know if there are already any support groups in your area? for our town there are already FMS, MS, arthritis, etc. support groups--support groups for every illness under the sun. they often have speakers or a specific topic for each meeting or sometimes just a discussion--depending on the size of the group. maybe you are looking for a different focus though than already existing groups....good luck! emily
  11. Oops! I see you said you do exercise as much as you are able and that you eat healthy. Do you eat fish? I was focusing on just letting you know little variations like that aren't really significant test-wise!
  12. Your test can be affected by what you ate the day before or the lab itself...you didn't have any big changes in any of your categories...or your totals. Your total cholesterol is great (under 200) but your HDLs aren't so hot... Niacin is good for triglycerides from my understanding. I could go on and on about this but I won't! Sorry! Just wanted to say that variations can occur, just as they do with BP and none of yours were significant really in any category. Have you had your C-Reactive protein tested? This is a 'gold-standard' for heart disease/heart attack risk. Are you able to exercise? That hugely affects HDLs...and since I have not been able to, mine have gone down. I don't know what your diet is like, etc. so I'm not in a place to know what your other risk factors are. What does your doc say? Emily
  13. Tea, I know you didn't mean it this way, but I really think using the term 'shrinking' sends a very negative connotation to something that is as crucial and important to our well being as getting good medical care. Good psychological care can be so crucial in coping with chronic illness. Therapy has been discussed here many, many times on the board and folks have shared their experiences. I would definitely do a search. It has been hugely valuable to many folks here. I am a big fan of therapy--however, I echo what others have said: 1. you must find the TYPE of therapy that works for you, and 2. you must find a THERAPIST that works for you. We have to click with the person AND his/her methods. I echo Ernie and others also who state that the role of a therapist is very, very different than that of a friend or close family. We face situations in life, such as chronic illness, death of a loved one, etc. that sometimes requires expertise and coping strategies that our friends don't know or have the capabilities to offer, not because they don't care, but because they don't have the skills required for such life circumstances. A good therapist can help us to do so many things--see our role in relationshiops, cope with certain problems or struggles, learn to better ask for what we need, etc. etc. I have incredibly supportive friends, but we all also know that there are things that are beyond our ability to help each other with. And also, it is sometimes too much to ask them to take on what we are going through. For example, I can support my best friend as her mother is dying from terminal cancer, but a therapist is crucial in helping her to make decisions, come up with strategies for dealing with family members, her mother, and simply taking care of herself. It's important for me to remain her FRIEND, not her therapist. The two have very distinct and separate roles. I have noticed from your posts that you are struggling, and I do hope that you will seek out therapy and a kind listening ear. Ask around for recommendations. Talk to others about what type of therapy they have done and what works. You'll quickly find out which therapists in town are known for doing a good job and those who are not! Best, Emily
  14. Katherine, This post literally made my heart sick. These things are so incredibly scary and upredictable. I would be a mess too! I would be the worrier too! I cannot believe this happened. Wow. I know how careful you are about eating and living a healthy lifestyle. I'm so sorry you had to go through this. I was glad to just see an update that Ron is resting well and feeling quite upbeat. You are right about finding out who our friends really are....I am glad you have some who are sticking around and helping out. Thinking of all of you and I am so grateful for your quick thinking and the unbelievable medical care you received. Love, Emily
  15. Welcome Erika! Your sister is a big support to everyone here and we all love her! So we are happy to have another member of her family join! I am sorry though that you have POTS too....and goodness, I hope you manage okay with the pregnancy. There is such a range of folks here symptom-wise...so hopefully you can find the support you need in the areas you need. Emily
  16. Oh Corina! Reading this post made me sooooo happy! You have so much strength and courage and fought so hard for this....what I am most happy for is that it has been worth the fight! You are getting such wonderful careful care and rehab. Such a great integrated approach that really meets you where YOU are and doesn't try to fit you into a box. I think being in the water is such a wonderful feeling, but I never could handle it once I got out (didn't have all of the assistance that you do!) so I am glad you are getting to experience it. Congratulations on making it to rehab after fighting so hard, and I commend you for your hard, hard work through the rehab process. You really are such an inspiration and strong spirit! BTW, I think that wearing abdominal compression is a something that somehow gets missed or doesnt' get as much attention as perhaps it 'should'. We pay a lot of attention to the importance/helpfulness of compression hose, but not as much to abdominal compression. My ANS doc really pushed me to wear abdominal compression b/c so much of our blood pooling actually occurs in our abdomen (not just our legs) and the studies are showing that. So, I did try an abdominal binder but it would never stay in place. I also tried a brand called Ragu (I think? that tearose recommended a long time ago)...I haven't tried the Veronique brand as that is one she hadn't mentioned earlier when I was looking. She's tried a lot of brands though! I wear what is called a high waist brief over top of my compression hose. My compression hose compress all the way to the abdomen, and then I pu the girdle on. If you can't get hose that compress to the waist, then you can wear what tearose described which is like the high waist brief, but compresses the upper leg also. I wear the Sigvaris brand of hose b/c they are the only brand I have found that compresses to the waist. Most brands stop compressing at the upper thigh which leaves me with a pooling of blood b/w wear the hose stop compressing and the girdle starts compressing. I wear something called lipo in a box and I LOVE them: www.lipoinabox.com. Love them! Did I say, I love them!? I hope you will find yourself feeling stronger (in spirit and in body) every day! Love, Emily
  17. Interestingly, my friend just received IVIG treatments during pregnancy for low platelets. She is an otherwise perfectly healthy woman. However, she needed the IVIG to deal with the low platelets. She had an allergic reaction which they controlled using benedryl. She was not able to take steroids b/c she also had gestational diabetes. Otherwise, it seemed to do the trick for her and she delivered a healthy baby and she is healthy post-delivery. Obviously not related to POTS, but it was interesting that she just received this treatment. My doctor has suggested watching my immunoglobulin levels while undergoing tx for chronic lyme and keep IVIG in the picture if they go low. Melissa is certainly the 'expert' when it comes to topics like these! Emily
  18. This is a good question and I hope someone will have the answer. I don't know what the reason is for all the overlap or how many of us have both conditions. I was diagnosed with 'partial diabetes insipidus' but i don't think that the test was done properly. I don't know what to think. My POTS doc hasn't pushed it, and he seems quite puzzled by my level of urinary frequency and volume, despite his level of expertise! I take DDAVP twice a day and I'm not sure how I would manage without. The problem is that when it wears off I pee and pee and pee even more in between doses. Dr. Grubb put me on a night time dose the first time I saw him and later I added in a day time dose. I have heard other folks say that it is not okay to take DDAVP regularly like this, and that Vandy recommends not taking it more than 2x per week. I feel very confused about what decision to make or even what sort of doctor is the right person to see about this problem. However, it significantly interferes with my sleep and quality of life. Emily
  19. Pamyla, I would like to add my many, many thanks to you for doing the newsletter! It's one of my absolute favorite parts of DINET. Every ounce of energy we have is precious, and I appreciate you giving so much of your time to do the 'behind the scenes' work of the newsletter. I wish I had a clue about HTML or any other such computer-oriented thing, but I don't, so I am of NO help in this department. I have enough trouble getting my blog to work correctly. Anyways, thanks so much for your hard work... And thank you in advance to whomever is able and willing to take on this task. I admire you for saying that you feel that you can't do it anymore--it's hard to set boundaries and say 'no.' Emily
  20. I have had great success with Lyrica for my neck pain. It took a while for it to really work for me and for me to find the right dose, but I can't quite remember how long. Give it a couple of weeks though...and call your pharmacist if you want specifics....they are the best at that stuff! It should work much faster than a drug like neurontin which can take up to a month to really tell a difference. Anyways, I only take 75 mg TOTAL a day and it is enough for me. I started at 25 mg and gradually worked up b/c the side effects hit me pretty hard and I had to ease into it. I'm glad I waited it out though b/c it's been one of the few meds that has made significant improvements for me. I hope you will get relief soon and find the optimal dose for you. You can take quite a bit of that stuff!!!! Emily
  21. Tea, How did they test for coffee allergy? Via skin testing? Emily
  22. Ditto! Happy Birthday Chica! Wish you were in the Caribbean for real! Thanks to you I'm looking a little less pale with my Jergens! I do wish for some escape for you today...even if it's not quite the Caribbean. Lots of love, Em
  23. Rachel, What's normal???!!!!!! Sorry, I so couldn't resist. I really hope the Prevacid helps. It took me a while to notice a difference, but I'm glad I gave the Zantac a shot. I would be interested in the link b/w fatigue and reflux though...I don't think I noticed a change there. Although, like morgan was talking about...I did used to wake up often in the mornings with pain that would keep me awake. Thankfully I don't have that anymore! Emily
  24. Rachel, I'm sorry I am so late chiming in...as you have already been to your PCP by now. Oops. My PCP actually ended up solving the mystery for me anyways, so maybe you can say adios to the doctor you saw anyways. My PCP sort of just figured it out by trial and discussion...I'm so tired, I'm not making much sense. Bottom line is that I did not have traditional reflux symptoms, but had this persisten pain/discomfort, etc. in the duodenum area. My PCP thought that I probably had some damage there or some acid problems. He also explained how inter-related upper GI and lower GI problems can be and that maybe helping to solve my upper GI problems would help solve lower GI problems. I didn't have any testing done. Instead...I just started trying the most mild of meds, Zantac at 150 mg at bedtime. It has worked really, really well for me and that pain has completely healed. So I think he was totally on the right track as to what was going on. I went off of the Zantac recently for a few days before some allergy testing and was really miserable again...so I realized it wasn't a med I wanted to go off of. I don't have the Gastroparesis on the level that others do, if at all...so my situation may be a bit different. But, I did feel good about getting the Zantac and trying it at least to see if it helped. It probably actually healed the damage in the upper GI area by preventing all that acid. I don't know. Compared to all of the other meds I'm on...I feel least scared/concerned about Zantac! LOL. At least it's been around for a long time and tried and true. Although Reglan has been around for a long time and it's pretty scary...but you are smart and good at making decision so you had already ruled that one out as a drug to take long-term. Let us know what you decide. Follow your gut (literally and figuratively! ) I hope your PCP was able to problem solve with you. Emily
  25. rachel! thanks for posting this little bit of good news. it will feel so good to be in the water this summer on these hot days! a few laps is pretty good in my humble opinion! i worked and worked and worked at swimming several years ago after seeing dr. grubb and could never get to a few laps! i know, i know, you used to be a competitive swimmer so what's a few laps, right? but it's a big, big deal! you go girl! i wish so much that you could get provigil. i just think that it is unjust that we don't have access to meds that help. and this one clearly helps you. you deserve that extra boost (however small it may be) every day...not just as a 'treat'.... it's good to go in the evenings AFTER you don't have to put your compression hose on for a second time that day! emily
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