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Re: moveFrom: Barbra (anonymous@obgyn.net)Mon, 10 Dec 2001 05:02:04 -0600 (CST)
At Mon, 10 Dec 2001, Sonnet wrote: > >Thank you Barbra that was a really sweet note! I sure hope we can help >you find your way through this. Being sick is no fun and that goes >double when doctors aren't really sure what's wrong or how to fix it. > >I appreciate all your kind comments and good thoughts for us and our >son-to-be. We're very excited to become a little family! I hope that >you can find some answers soon that willr estore your health - and maybe >give you the child you've been waiting for. > >Take care. > >At Sun, 9 Dec 2001, Barbra wrote: >> >>Dear Sonnet,' >> >>Thank-you for your response on how to unsubscribe. >> >>I have gotten a couple of personal inspiring,personal letters from some >>group memebers that have been a real eye opener. >>I think that I should reconsider staying in the group for support as >>well. >> >>I took the time out to read your Quilt message,and my heart goes out to >>you. >> >>You are a very kind woman and I would also like to applaud you on your >>succces on how you deal with your PCOS.I cried when I read your post,it >>was as if I was looking in a mirror.Not the same problems,,but the >>feelings of despair. >> >>Also,I want to say that the little boy that you and your husband have >>adopted,can not have gotten a better,loving home. >> >>God has blessed you for helping others,by sending you a >>child.....something that I always prayed for and never got,and at this >>point,would not be capable of caring for a child,for which at time,I am >>a little resentful. >> >>I read through most of your posts and am educating myself more about the >>PCOS,as this is a new diagnosis for me and no meds have been prescribed >>yet,as I don't have the weight,hair,and menstral irregularities. >>Sometimes,I wonder if this is truly a diagnosis. >>I have taken your advice and read all on PCOS and the only things that >>point to me are that I have elevated testosterone,androgen and >>DHEA"S....and insulin resistance to a degree. >> >>I am seeing another specialist next week,of which these issues,he >>specializes in and I will post a message as soon as I get somewhat more >>educated with what is going on with my body. >> >>Wishing you the best with this lovely little boy, >>God bless you, >> >>-- >>Sincerely, >>Barbra Camara >> >-- >Sonnet Fitzgerald, PCOS Association, Online Community Liaison. Email: sonnet@pcosupport.org > Dear Sonnet, I have a question for you that may sound strange,but is one that is of constant discomfort,that the doctors are a little puzzled. The major symptom that I experience is a very distended abdomen.It inflates and deflates,,,like a baloon.I am not over weight.Some days,you would never know that I have a belly...other days,it is so embaressing,that I have to struggle into a control top support hose(I have to wear support hose for the problems in my legs,another issue that confuses me),and then feel so constricted. I am on a low carb diet......even if I refrain from carbs almost completely,I still get this bloating.I was told to lie down for twenty minute intervals on my left side,four times a day.It does get rid of the retention. Now,here's the whopper question.....I have a CONSTANT PULSATING IN MY ABDOMEN,where you can actually see the pulse and is visible to the naked eye when the belly is distended.I,myself,thought it may be an aortic anyurism...but told otherwise from two specialists..one being my cardiologist.I have still not had an ultrasound done...apparantly,that is to come soon. In Canada here,the waiting to get the tests done are unbelievably frustrating,as we have shortages in the hospitals for tecs and usually it takes anywhere from three to six months to get an ultrasound done.Getting in to see a specialist also takes about the same amount of time.Another problem here,is that the doctors are relocating to the US and the ones that practice here,are not taking any new patients. I have been waiting to see this specialist now for over three months. Now,with this pulse...my doctor says it is a pressure pulse that I feel,rather than blood pressure.The difference being that my diastolic and systolic pressures differ more than forty apart...eg,mine is 120/55. Other times it is 180/65....that is when I wanna rip my insides out,literally speaking,as the pressure is so uncomfortable and actually worse than that of the horrible menstral cramps that I used to get that would leave me in a fetal position for two days.I can actually feel as if I am somwewhat drowning and I get extremely short of breath.During these episodes,I am unable to lie flat on my back.I was into heart failure,,but corrected it'self with proper diet etc.Long and frustrating story. To be honest,it is that that bothers me most and the weakness in my legs with the discolorations upon standing and sitting. Honestly,I don't seem to fit this diagnosis at all. The pressure pulse is felt from my abdomen all the way to my feet. It is more as if I am experiencing strange sensations,but that are clearly visible to the naked eye and felt with the stethescope. The only thing that helps,is when I lay propped up on a couple pillows under my back and one under my knees,....usually after about half an hour,the pressure subsides somewhat,but still awakens me during the night. It is also worse after eating and drinking. You seem to be well versed and very well read on things,as you certainly have had your fair share of trials and tribulations with getting a proper diagnosis for yourself,as I am. This is so frustrating for me Sonnet.I feel as if this feeling will never go away,and it doesn't and is really the one thing that gets me so depressed. Imagine,going thru five years of feeling as if someone were poking you night and day without any break..surely,,,,it would be enough to drive you to the brink of whatever........You know what I mean. I guess we all have so many issues to deal with.....one thinking that mine is worse than her's or whatever the feelings are...but we all have discomfort and desperation at giving us relief from our current limitations. I have read so many posts on the quilt,and I truly believe this to be a disease that effects the woman's whole quality of life....especially her self esteem and gosh...my mood swings.When I am having what I call a fairly good day...I get so excited that this may be coming to an end,and that I will wake up one day,only to discover that these feelings and discomforts will dissipate,,but they don't. I am trying to cope the best way that I can.....I find comfort in my two peekinese dogs and my African Grey Congo Parrot and two other smaller connure parrots.They talk to me,and seems,since I don't have children of my own...that these little guys are what makes me want to get up from bed. Don't misread me....I don't spend more than eight hours a day in bed,as I tend to push myself and probably,too far at times to find a minute sign that I am living a life as normal as can be. If this indeed is my diagnosis.....I am hoping that I can at least get some medications to help with the discomfort.It was so frustrating to be told that I have this chronic disease,but that I don't produce exxessive hair growth on area's that it should not be and do not have the hair loss(although,I did loose almost all the crown of my head and sides a couple years ago when they kept testing my thyroid),I am not overweight,but actually quite muscular...that they refrain from any meds.The only thing that I take is Chromium+ Vanadium...apparantly it helps with the insulin resistant problems that I supposidly have.Who knows.I have had many a diagnois,from being neurotic to bulemic and anorexic ,only then when my heart began to fail,was it then that they made their one diagnosis,but attributed it,in their opinion that I was starving myself.This had made me loose so much faith in the doctors,as I did and always will,continue to take care of my body. Hoping you can find an answer......or at least give me an ounce of hope.
>From what I read in your posts...you know more than most doctors and I Hoping you have a great day...and thanks for being there for all of us women...even at times when we(being me),can get a little passionate about some issues.:-) Please give me an update on when you are going to officially get the little boy..I would love nothing more to share your joy! YOU DESERVE THIS LONG,WAITED CHILD!HE WAS WAITING FOR YOU! I do apologize for coming on so strong about the anti-depressants....and now understand that if it works for some..then at least they can deal with the other health issues without being illogical and tangeable....as I am at times. I think that possibly some bodies are just a little more sensitive THAN others when it comes to meds,and possibly that is one reason that the specialist refuse to give me any medications for now.
-- Sincerely, Barbra Camara
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