{"id":567,"date":"2011-08-13T00:34:50","date_gmt":"2011-08-13T00:34:50","guid":{"rendered":"http:\/\/michelledevon.com\/?p=567"},"modified":"2021-01-03T00:43:32","modified_gmt":"2021-01-03T00:43:32","slug":"my-heart-is-not-broken-but-something-else-is","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2011\/08\/13\/my-heart-is-not-broken-but-something-else-is\/","title":{"rendered":"My Heart is Not Broken, But Something Else Is"},"content":{"rendered":"

If it\u2019s not one thing, it will always be another, because that\u2019s the way things go\u2026\u00a0one thing leads to another.<\/a>.. (yes, I can hear you singing that \u201980s tune in your head now, and if you\u2019re not, then you\u2019ll click that link and go listen and get it stuck in your head and be mad at me for it! Ha!)\u2026<\/p>\n

But where my health is concerned, I believe that I have now researched, studied, watched videos, read about, and asked questions of doctors and literally been to dozens, if not more, doctors. I have actually been more knowledgeable about some of the medications the docs gave me and some of the conditions I\u2019m dealing with than the doctors are. I feel almost like I\u2019m getting a medical degree, not much different than the PAs and NPs I see at the teaching hospital clinic where I currently go. Sometimes, I have caught mistakes or interactions that were missed by docs. It\u2019s proactive, but it\u2019s sort of scary when you think that some patients take what doctors say as gospel truth and then don\u2019t do the research or catch these mistakes. Docs are only human. Mistakes do happen.<\/span><\/p>\n

However, recently, it\u2019s sometimes tough for me to justify paying these doctors their, what I consider anyway, excessive fees, when I\u2019m the one doing all the work. I come in with symptoms and they throw a test and a pill at me and don\u2019t even give me a diagnosis and then expect that\u2019s the end of it. I\u2019m doing all the research, poring over my medical records, tring to find connections and pathways that lead to something that makes sense. When did doctors stop reading lab results, comparing that to symptoms, and researching conditions to make a diagnosis?<\/p>\n

I am often lucky to get 15 minutes with a doc, maybe 5 minutes with the nurse, and then they throw a lab paperwork at me and a pill or new prescription or a sample at me, and tell me to follow up in X day\/weeks, etc.<\/p>\n

It makes it really hard to get a diagnosis\u2026<\/p>\n

SPECIALISTS, A LITTLE BETTER?<\/strong><\/p>\n

I\u2019ve found that the specialists are a bit better at taking more time with me than their primary care counterparts. I get that. They deal with less flow through, their patients usually have been pinned down to having something related to their specialty, perhaps actually even have a diagnosis, so they can spend more time talking about symptoms and such. But that really hasn\u2019t been the case with me, because there\u2019s nothing that\u2019s quite so cut and dry about my conditions. So I go to a specialist, he orders a test, we wait for the test, wait for the next appointment, and then we spend a few minutes talking about the test, get a med and get sent on my way, follow up in X days, weeks, whatever.<\/p>\n

The last time this happened was with an endocrinologist. He gave me an ACTH stimulation test. The test showed my coritsol levels were low, I failed the stimulation test, so he put me on 30mg of hydrocortisone per day for coritcaladrenal insufficiency. We took my 24-hour urine test again after a month of treatment, and my cortisol levels were just the same as they were before he put my on the hydrocortisone. No change. No increase. So he changed to a different medication. Dexamethasone. You can read this post to see how the Dexamethasone affected me, but the short story of it is that it caused a steroid psychosis and I had to come off it. What did he do? He put me right back on the same 30mg dosage of hydrocortisone that I was on before \u2014 you know, the dosage that I just said wasn\u2019t high enough and had had no result changes on my cortisol levels. This was in May. His office said to follow up with him in August.<\/p>\n

So I\u2019m supposed to go from May until August on a dose of hydrocortisone that we both knew from the lab results would not be enough, and that means I had all the symptoms of adrenal insufficiency\u2013including going into shock on a couple of occassions\u2013but I\u2019m supposed to wait until August to see him.<\/p>\n

And I paid this man for this.<\/p>\n

SOME ARE JUST ASSHOLES<\/strong><\/p>\n

Then there was the endocrinologist who took one look at me, an overweight, middle-aged woman, without looking at any lab tests, without ordering any lab tests, without even physically examining me and said, \u201cThere is no way you have adrenal insufficiency.\u201d<\/p>\n

\u201cWhy?\u201d I asked.<\/p>\n

\u201cBecause you\u2019d be anorexic.\u201d<\/p>\n

Oh, you mean I wouldn\u2019t be fat. That\u2019s what he meant to say. He didn\u2019t say it, but it\u2019s true. He didn\u2019t have to say it, but what I am amazed about is that he couldn\u2019t figure out that, as a doctor, he should know that anorexia is not the same as anorexia nervosa and that a person can absolutely be overweight and still not be getting nutrition and metabolizing food and medication. This was the case with me. Food was not being metabolized, I was not getting nutrition from it, it wasn\u2019t being burned for energy, so it was being stored as fat, with no nutritional benefit. I am anemic, vitamin B deficient, vitamin C deficient, calcium and sodium and potassium and magnesium deficient. The bloodwork said so. But he never bothered to pull those tests. He never bothered to look. All he saw was an overweight, middle-aged woman.<\/p>\n

If one more doctor had told me I had fibromylagia, I was going to scream. I do not have fibromyalgia. Fibro doesn\u2019t cause people to go into shock. Fibro doesn\u2019t shut down the adrenal response. Fibro can be devestating to some people, but it\u2019s not what I have. And in fact, I\u2019m willing to bet that 90% of people out there with a fibro diagnosis probably aren\u2019t even fibro. I would venture to guess they have a condition that their doctors are just too lazy or stupid to find.<\/p>\n

But this same doctor said to me to stop taking the steroids. Steroids aren\u2019t a drug you can just stop taking. You have to wean off them. I told him, \u201cIf I don\u2019t have these problems, why is it the steroids make me feel better?\u201d<\/p>\n

He says, \u201cCocaine and meth make people feel better too, but that doesn\u2019t mean their bodies are deficient in cocaine and meth.\u201d<\/p>\n

Asshole.<\/p>\n

He the proceeded to tell me that he wouldn\u2019t trust the ACTH stimulation test I took, the $500 test that I had to take for the one doctor that was only three weeks old at the time, and he said it wouldn\u2019t be accurate because of my weight. Nice. So what did he do? he told me to stop taking the steroids and retake the ACTH test.<\/p>\n

Wait a minute. A $500 test that is only three weeks old that he says he wouldn\u2019t trust the results of anyway, but he wants me to redo it again? Why? He knew I didn\u2019t have insurance.<\/p>\n

Did I mention\u2026 asshole?<\/p>\n

WHO GIVES A RAT\u2019S ASS?<\/strong><\/p>\n

Needless to say, I don\u2019t go see that doctor anymore.<\/p>\n

Then I went to see my primary PA. She helps me. She listens to me sometimes and other times has to rush me out the door. She doesn\u2019t, as far as I know, truly understand how awful my life can be right now. But at least she listens when I come in and tries. She throws a lot of pills at me, and I wish that weren\u2019t the case. But she was the one who gave me high-dose steroids and that\u2019s been the only thing that\u2019s made me feel even moderately better in the past seven years.<\/p>\n

But she\u2019s limited to what she can do. She\u2019s not a specialist. She can\u2019t diagnose me with the things I\u2019m dealing with. She can refer, but to whom? It\u2019s just a broken, broken system.<\/p>\n

So finally, a couple weeks ago, I woke and was unable to breathe. Every time I\u2019d move, even a little, I\u2019d lose my breath and have pain in my chest and feel like I was suffocating. I\u2019d wake up feeling like I was suffocating. I couldn\u2019t sleep well, couldn\u2019t even walk to the bathroom and would literally be gasping for air like I was drowning. My pulse would go through the roof. My BP would go through the roof. My oxygen levels would plummet.<\/p>\n

I go to the doctor with the symptoms, ask about what\u2019s wrong, why it\u2019s happening. Ask if I can get some oxygen so I can breathe\u2026 I\u2019m put off for three days, with no help, no answer. Buffy calls the doc\u2019s office each day, no response. She texts the PA who finally responds and says that her supervising doc says that she can\u2019t treat me if I don\u2019t go to the ER immediately.<\/p>\n

It\u2019s been three days since I\u2019ve been in there. If it was an immediate ER situation, why did no one tell me? And what is up with the threat? I have been one of if not the most compliant patient they\u2019ve probably ever had and lord knows I\u2019ve spent plenty of damned money\u2013mine and my family and friends who have helped me out\u2013 at their clinic, and she is going to fucking threaten me with stopping treatment for something that I was willing to do but no one had bothered to tell me to do, leaving me miserable at home waiting to hear from them for three days? Screw that!<\/p>\n

So I went to the cardiologist, which leads to the point of the post: My heart is fine. Mild regurgitation of the mitral valve, mild congestive heart failure but no damage to the heart, mild pumonary hypertension. The cardiologist says the CHF is likely due to the hypoxia. That\u2019s what\u2019s making it hard for me to breathe. He prescribed supplemental oxygen, so now I use an oxygen concentrator, which keeps my sats up in the low 90s, and really helps a lot with being groggy and fuzzy and other problems that come from the hypoxia. It\u2019s a pain in the tuchus to wear the mask and carry the cords around the house. I can\u2019t leave the house either, \u2019cause we don\u2019t have a portable o2 machine, and I can\u2019t afford to buy one if this is going to be a temporary problem. So I\u2019m stuck at home, unable to go anywhere and do anything, but that\u2019s okay, \u2019cause I feel like snot and really don\u2019t want to do much anyway.<\/p>\n

WHERE DOES IT END?<\/strong><\/p>\n

I\u2019m frustrated and nearly in tears writing this. I don\u2019t know what to do anymore. I\u2019ve done everything I know to do. I\u2019ve gone to the doctors, I\u2019ve told them my symptoms, I\u2019ve shown them the proof of what I can, explained what I can\u2019t show, and I\u2019ve gone to every follow up they\u2019ve given me, every medication was taken perfectly\u2026 and I still don\u2019t feel right. I still can\u2019t do the things I want to do. I can\u2019t even roll over in bed without my pulse ox dropping and my chest hurting and that\u2019s WITH oxygen.<\/p>\n

Is this all there is ever going to be? Is there nothing that will make me better?<\/p>\n

Then to top it all off, I\u2019m sitting here today barely able to hold my head up, can\u2019t sit up straight, can\u2019t even get a good, solid breathe in, am choking on my food because I can\u2019t swallow it\u2026 and social security tells me that according to their \u2018evidence\u2019, that my \u2018daily activities are not as limited as you indicated.\u201d<\/p>\n

How\u2019s that for the government calling me a liar? They literally said that my activities aren\u2019t as limited as I indicated \u2013 and sadly, I thought that I was being light on how bad it really was in the report. Some days, I can\u2019t get out of bed or even roll over, can\u2019t lift my hands over my head, can\u2019t even dress myself completely anymore and now I can\u2019t even eat without worrying about choking\u2026 but my daily activities aren\u2019t as limited as I indicated.<\/p>\n

Sigh.<\/p>\n

A few months ago, I had a few good weeks, really good weeks\u2026 where did they go? Why won\u2019t they come back?<\/p>\n

People seem to understand when you say cancer, or something serious like that, but what\u2019s so interesting is that the DM I have actually kills more people who have it percentage-wise than all the blood cancers combined. There\u2019s no awareness for it though. No parades, no ribbons, no fundraisers. Oh, but you don\u2019t look sick\u2026 but oh, yes, I do. My body is dying\u2026 it\u2019s giving up a little at a time and I\u2019m doing everything I can to hold it together.<\/p>\n

But it\u2019s hard going to bed at night and wondering\u2026 Am I going to wake up in the morning? If I do wake up, how am I going to feel in the morning? Can I tolerate the pain one more day? Can I sit and look at myself in the mirror and see what I hate one more day?<\/p>\n

And I do. Because there is no other choice. There is no other way. Because behind everything, I love my life, my family and my friends. I love who I am when I can be me, and I do come shining through in brief moments now and then. I miss me. I miss my life. I would do anything to have it back.<\/p>\n

But for now, I have my family. People who love and care about me. People who help me. People who don\u2019t pity me. I have my friends and the internet folks who love me and pray and care for me. I have hope. I really do. I have dreams and prayers and wishes for the future\u2026 and somehow, through it all, I know it\u2019s all going to be okay.<\/p>\n

I just really wish I knew when\u2026 or how\u2026 so I could start down that path right now.<\/p>\n

Because, my friends, I am so very tired\u2026<\/p>\n

Love and stuff,<\/p>\n

Michy<\/p>\n","protected":false},"excerpt":{"rendered":"

If it\u2019s not one thing, it will always be another, because that\u2019s the way things go\u2026\u00a0one thing leads to another… (yes, I can hear you singing that \u201980s tune in your head now, and if you\u2019re not, then you\u2019ll click that link and go listen and get it stuck in your head and be mad […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[8],"tags":[],"class_list":["post-567","post","type-post","status-publish","format-standard","hentry","category-health"],"yoast_head":"\nMy Heart is Not Broken, But Something Else Is - Author Michelle Devon<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/michelledevon.com\/index.php\/2011\/08\/13\/my-heart-is-not-broken-but-something-else-is\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"My Heart is Not Broken, But Something Else Is - Author Michelle Devon\" \/>\n<meta property=\"og:description\" content=\"If it\u2019s not one thing, it will always be another, because that\u2019s the way things go\u2026\u00a0one thing leads to another... 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