tag:blogger.com,1999:blog-6102758362320348657.post3361139288796673253..comments2023-04-26T10:48:38.547-04:00Comments on Bent Not Broken: Follow-upBentNotBrokenhttp://www.blogger.com/profile/10151724076659555122noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-6102758362320348657.post-57282987082051974082016-09-27T16:20:11.821-04:002016-09-27T16:20:11.821-04:00The hot flashes come with the hives, but because o...The hot flashes come with the hives, but because of my medication the hives don't always form. It's pretty intense. I have Mast Cell Disorder, which is a really broad term but it's a good thing because having a more specific diagnosis would most likely mean having more serious symptoms. My family history is Lupus and Sjogrens, but one of my sisters has what I have. Of all my family members with these diseases, none of our labs really match up. Everything you mention, I always had normal results, plus at least a dozen other things. I only know what i have because I googled the antihistamine cocktail I was taking, found a doctor who had done research at a university near my job on them, and made an appointment. <br /><br />Talking to the doctor who was really invested in my case was great after years of feeling like I had to sell doctors on the fact that I was sick, but after confirmation that I was sick, I did start to feel a little like a lab rat. I suspect this is why fertility treatments turned me off right away. Melioshttps://www.blogger.com/profile/17748771387687894229noreply@blogger.comtag:blogger.com,1999:blog-6102758362320348657.post-91653668844891219632016-09-27T11:13:52.504-04:002016-09-27T11:13:52.504-04:00This comment has been removed by the author.dublinerinDeutschlandhttps://www.blogger.com/profile/14804856792598440633noreply@blogger.comtag:blogger.com,1999:blog-6102758362320348657.post-22220685392746682772016-09-27T08:56:14.871-04:002016-09-27T08:56:14.871-04:00I guarantee that there would be research, understa...I guarantee that there would be research, understanding, and treatment if this were a men's condition. Just look at how many prescription medications (covered by insurance) there are on the market to treat male sexual dysfunction compared to how many there are for women (one, I believe, and it just hit the market this year).BentNotBrokenhttps://www.blogger.com/profile/10151724076659555122noreply@blogger.comtag:blogger.com,1999:blog-6102758362320348657.post-79366960181728990562016-09-27T08:54:19.171-04:002016-09-27T08:54:19.171-04:00I really don't know. Maybe because it's a...I really don't know. Maybe because it's a women's disease? Maybe because the symptoms are so non-specific, vary widely, and don't necessarily correlate to the severity of the disease? Maybe it's because women don't speak up? Maybe it's because doctors won't listen when they do? Maybe it's because it can't be diagnosed in any other way but a procedure that's technically considered surgery? Maybe it's because insurers are hesitant to pay for an expensive diagnostic procedure? Maybe it's some combination of the above? <br /><br />At this point I just want answers. I hope I get some.BentNotBrokenhttps://www.blogger.com/profile/10151724076659555122noreply@blogger.comtag:blogger.com,1999:blog-6102758362320348657.post-76818904817141037122016-09-27T08:49:37.466-04:002016-09-27T08:49:37.466-04:00Thanks, Mali! It's so unfortunate that we are...Thanks, Mali! It's so unfortunate that we are often placed in a position where we have to advocate for ourselves. <br /><br />I agree that the article was outrageous, and I think that the experience the author wrote about is far from uncommon. Even when comparing mine and hubs' experiences, his are so much different than mine. He went to the ER with kidney stones and had an IV drip of pain medication within 20 minutes of walking through the door, within 90 minutes he had a scan to confirm the size and location of the stones, and within three hours we were walking out the door with instructions for passing the stones and a bunch of pain medication. Whereas I went to the urgent care with bronchitis and had to beg for a simple breathing treatment.BentNotBrokenhttps://www.blogger.com/profile/10151724076659555122noreply@blogger.comtag:blogger.com,1999:blog-6102758362320348657.post-16915807638799953942016-09-27T08:39:34.037-04:002016-09-27T08:39:34.037-04:00Rant away, sista! I completely agree with you tha...Rant away, sista! I completely agree with you that the quality of care you receive is often determined by the quality of your health insurance. I'm quite fortunate to have pretty good insurance, but finding a doctor who is willing to take a few minutes and listen, is the issue. Like I said to a friend on the phone last night, "I'm asking for a procedure to potentially diagnose a condition that I've had symptoms of for 20+ years, not an open ended prescription for pain pills."<br /><br />For the lap, I'm having it done on Monday (time TBD) and I'm off for the rest of the week. Hopefully that will be enough time...I have a high tolerance for pain and I tend to recover pretty quickly. <br /><br />Do you mind if I ask what autoimmune condition you have that causes hot flashes? I have a loooooooong and well established family history of autoimmunes but I've never been diagnosed with any (yet). My thyroid has always tested normal and my SED rate and Rheumatoid factor were both normal as well.BentNotBrokenhttps://www.blogger.com/profile/10151724076659555122noreply@blogger.comtag:blogger.com,1999:blog-6102758362320348657.post-60786191431497797412016-09-27T07:27:18.752-04:002016-09-27T07:27:18.752-04:00I'm so sorry you had to push in order to get t...I'm so sorry you had to push in order to get the investigation that only seems appropriate, given your symptoms. <br /><br />A lot of times I have been thinking that there would be so much more research and understanding around endometriosis if it happened to men instead of women. Why should it be okay and "normal" for a woman to suffer every month?<br /><br />Like Cristy, I hope it will all go well and that you will recover quickly.Elainehttp://www.elaineok.comnoreply@blogger.comtag:blogger.com,1999:blog-6102758362320348657.post-80072029479280652272016-09-27T07:03:01.048-04:002016-09-27T07:03:01.048-04:00Why is it so hard for endometriosis to be taken se...Why is it so hard for endometriosis to be taken seriously? Especially on a preventative care level. Argh. Could go on, but already lost one comment.<br /><br />Echoing Mali about being glad you pushed for this. Though I do hope that it means a fast recovery all around.Cristyhttps://www.blogger.com/profile/04317873211902543387noreply@blogger.comtag:blogger.com,1999:blog-6102758362320348657.post-21164646393667108012016-09-27T05:38:41.134-04:002016-09-27T05:38:41.134-04:00Glad you're getting the investigation you need...Glad you're getting the investigation you need and want, and I'm proud of you for advocating for yourself, though sorry you had to fight for it. That article is outrageous but sadly not surprising. Sigh.Malihttps://www.blogger.com/profile/03928262526502319303noreply@blogger.comtag:blogger.com,1999:blog-6102758362320348657.post-9531575264452756242016-09-26T10:44:12.550-04:002016-09-26T10:44:12.550-04:00In my adult life I've been through 4 different...In my adult life I've been through 4 different insurance plans due to being on my moms plan, then switching jobs a few times etc. So over 10 years of trying to get a diagnosis for autoimmune condition, I can say that it does seem it is easier to get the tests you need if your insurance plan pays out to the doctors on time and without much discussion. The more explanations and paperwork insurance wants, the less likely the doctors office is going to recommend it. <br /><br />I realize this because I currently have amazing insurance, the doctors get paid within 5 days of putting in the claim. I can get tests for pretty much anything I ask for. I go to a primary for cholesterol, and we throw in all the autoimmune stuff too. Ovary on fire? Lets scan the shit out of that, even though we do it once a year and nothing comes up! Still on fire? Lets go have an MRI even though we JUST HAD ONE for our gall bladder. Never too much radiation on the Empire Plan. <br />I joke, but when I had crappier insurance I could be covered in hives telling a doctor I had these hives every day for 5 years/7 years/9years and they would tell me I probably just used the wrong soap. It is really messed up. <br /><br />That all being said, if you have any history of autoimmune conditions in your family, check up on it, Hot flashes can be a sign of quite a few things, in fact if I wake up late or forget my pills, the hot flash is my reminder. <br /><br />My coworker just had diagnostic Laparoscopy in the beginning of September. She only planned a few days off but ended up taking a few extra, not because of the pain or anything like that, but because she wasn't supposed to take a shower and realized she didn't want to come to work dirty. Hopefully you get some answers there.<br /><br />Sorry for my little insurance rant there. Reading about people not being taken seriously and having to spend so much time and energy feeling shitty makes me so mad and takes me back. I know it's also sometimes just that the doctors want the softball patients, and that is a different problem all together. I know alot of people have such a hard time getting Endometriosis treatment, but it is so common when you talk to people, and yet, doctors don't even like saying the word. <br /><br />Melioshttps://www.blogger.com/profile/17748771387687894229noreply@blogger.com