My Heart is Not Broken, But Something Else Is

If it’s not one thing, it will always be another, because that’s the way things go… one thing leads to another... (yes, I can hear you singing that ’80s tune in your head now, and if you’re not, then you’ll click that link and go listen and get it stuck in your head and be mad at me for it! Ha!)…

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’m dealing with than the doctors are. I feel almost like I’m 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’s proactive, but it’s sort of scary when you think that some patients take what doctors say as gospel truth and then don’t do the research or catch these mistakes. Docs are only human. Mistakes do happen.

However, recently, it’s sometimes tough for me to justify paying these doctors their, what I consider anyway, excessive fees, when I’m the one doing all the work. I come in with symptoms and they throw a test and a pill at me and don’t even give me a diagnosis and then expect that’s the end of it. I’m 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?

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.

It makes it really hard to get a diagnosis…

SPECIALISTS, A LITTLE BETTER?

I’ve 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’t been the case with me, because there’s nothing that’s 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.

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 — you know, the dosage that I just said wasn’t 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.

So I’m 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–including going into shock on a couple of occassions–but I’m supposed to wait until August to see him.

And I paid this man for this.

SOME ARE JUST ASSHOLES

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, “There is no way you have adrenal insufficiency.”

“Why?” I asked.

“Because you’d be anorexic.”

Oh, you mean I wouldn’t be fat. That’s what he meant to say. He didn’t say it, but it’s true. He didn’t have to say it, but what I am amazed about is that he couldn’t 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’t 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.

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

But this same doctor said to me to stop taking the steroids. Steroids aren’t a drug you can just stop taking. You have to wean off them. I told him, “If I don’t have these problems, why is it the steroids make me feel better?”

He says, “Cocaine and meth make people feel better too, but that doesn’t mean their bodies are deficient in cocaine and meth.”

Asshole.

He the proceeded to tell me that he wouldn’t 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’t 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.

Wait a minute. A $500 test that is only three weeks old that he says he wouldn’t trust the results of anyway, but he wants me to redo it again? Why? He knew I didn’t have insurance.

Did I mention… asshole?

WHO GIVES A RAT’S ASS?

Needless to say, I don’t go see that doctor anymore.

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’t, 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’t the case. But she was the one who gave me high-dose steroids and that’s been the only thing that’s made me feel even moderately better in the past seven years.

But she’s limited to what she can do. She’s not a specialist. She can’t diagnose me with the things I’m dealing with. She can refer, but to whom? It’s just a broken, broken system.

So finally, a couple weeks ago, I woke and was unable to breathe. Every time I’d move, even a little, I’d lose my breath and have pain in my chest and feel like I was suffocating. I’d wake up feeling like I was suffocating. I couldn’t sleep well, couldn’t 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.

I go to the doctor with the symptoms, ask about what’s wrong, why it’s happening. Ask if I can get some oxygen so I can breathe… I’m put off for three days, with no help, no answer. Buffy calls the doc’s office each day, no response. She texts the PA who finally responds and says that her supervising doc says that she can’t treat me if I don’t go to the ER immediately.

It’s been three days since I’ve 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’ve probably ever had and lord knows I’ve spent plenty of damned money–mine and my family and friends who have helped me out– 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!

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’s what’s 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’s a pain in the tuchus to wear the mask and carry the cords around the house. I can’t leave the house either, ’cause we don’t have a portable o2 machine, and I can’t afford to buy one if this is going to be a temporary problem. So I’m stuck at home, unable to go anywhere and do anything, but that’s okay, ’cause I feel like snot and really don’t want to do much anyway.

WHERE DOES IT END?

I’m frustrated and nearly in tears writing this. I don’t know what to do anymore. I’ve done everything I know to do. I’ve gone to the doctors, I’ve told them my symptoms, I’ve shown them the proof of what I can, explained what I can’t show, and I’ve gone to every follow up they’ve given me, every medication was taken perfectly… and I still don’t feel right. I still can’t do the things I want to do. I can’t even roll over in bed without my pulse ox dropping and my chest hurting and that’s WITH oxygen.

Is this all there is ever going to be? Is there nothing that will make me better?

Then to top it all off, I’m sitting here today barely able to hold my head up, can’t sit up straight, can’t even get a good, solid breathe in, am choking on my food because I can’t swallow it… and social security tells me that according to their ‘evidence’, that my ‘daily activities are not as limited as you indicated.”

How’s that for the government calling me a liar? They literally said that my activities aren’t as limited as I indicated – and sadly, I thought that I was being light on how bad it really was in the report. Some days, I can’t get out of bed or even roll over, can’t lift my hands over my head, can’t even dress myself completely anymore and now I can’t even eat without worrying about choking… but my daily activities aren’t as limited as I indicated.

Sigh.

A few months ago, I had a few good weeks, really good weeks… where did they go? Why won’t they come back?

People seem to understand when you say cancer, or something serious like that, but what’s so interesting is that the DM I have actually kills more people who have it percentage-wise than all the blood cancers combined. There’s no awareness for it though. No parades, no ribbons, no fundraisers. Oh, but you don’t look sick… but oh, yes, I do. My body is dying… it’s giving up a little at a time and I’m doing everything I can to hold it together.

But it’s hard going to bed at night and wondering… 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?

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.

But for now, I have my family. People who love and care about me. People who help me. People who don’t 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… and somehow, through it all, I know it’s all going to be okay.

I just really wish I knew when… or how… so I could start down that path right now.

Because, my friends, I am so very tired…

Love and stuff,

Michy

 

 

 

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4 comments to My Heart is Not Broken, But Something Else Is

  • gigahound  says:

    Sleep Apnea has a couple of similarities as your condition. I was so confused when I suddenly began to gain weight. I was never a glutton, with the exception of a few meals that I absolutely had to have seconds (or thirds) of and the occasional holiday binge. I was working out, irregularly, but it was a pretty rigorous routine when I was at it. My job at the time was physical with lots of warehouse walking, heavy lifting, climbing…

    But the weight kept coming.

    My wife and I tried jogging around a park. I would run to the end of our road and back. I helped my father-in-law with winter wood. Random push-ups, jumping jacks, stair-climbing…

    But the weight kept coming.

    I would drop soda and other sugary drinks from my diet and would lose some fluid weight, eat lots of salads, cut back on other stuff that I wasn’t even abusing.

    But the weight kept coming.

    It’s amazing how quickly you can gain weight when your metabolism breaks down. Then you have to deal with the people around you. Worse are those people that you haven’t seen in a year or more…”Wow, you’ve gotten BIG!”

    It’s likely that I am naturally an emotional/sensitive person. But when you are suffering from long-term sleep deprivation you have to deal with actual real-life depression. And having to deal with the additional self-loathing that jumps at your newly obese body every time you look into a mirror…

    People begin to see an emotional wreck of a man who can’t control his eating, can’t stay awake at work, can’t get along with anyone, yells at his children and causes his wife emotional distress, can’t find any good in anything…

    I lost my job.

    My children became strangers.

    My wife considered divorce.

    I wanted to die.

    I almost did die.

    Then came the treatment. I began to put my life back together, made peace with my wife, got to know my children again. Found a job.

    I’ve been on treatment for nearly a year. In the past five months I’ve finally began to lose weight…over 60 pounds gone.

    I’m writing again. Reading more.

    Most people can’t understand it. It’s like you said, Cancer is something that people can understand. AIDS, Lou Garret’s, those are “real” problems. They make you weak, lose weight, fade away.

    But it turns out that some sicknesses make you gain weight. And that is something that people can’t accept.

    I don’t pity you. I’m sorry for you but I don’t feel sorry for you…if that makes sense. I envy the support you’ve found. All I had was a wife who was willing to stick it out with me a little bit longer than most women would have. Even now, only she understands it. She was there with me when I spoke to the doctors. She read the sleep test results. Was there when I picked up the machine that I have to possibly wear the rest of my life to sleep properly. Is there when I use it, lying next to me, listening to the machine push air down throat.

    Fortunately, she is all I needed.

    I don’t know what I would have done if I had needed long-term, financially-draining medical treatments. I don’t know who I could have turned to for that kind of help.

    So I envy you for the support that you’ve found and I admire you’re courage and often wonder where you find the strength to keep going.

    Michy is not a fat, middle-aged woman.

    Michy is the personification of strength, courage, and optimism. Not matter how low you feel, you have to be optimistic to see all those doctors and deal with their expensive ignorance and rudeness.

    Bukowski says, “What matters most is how you walk through the fire.” Grin it, bear it, don’t let it (or them) beat you. You are Jack Sparrow, scarcely armed, staring into the maw of a great beast, stealing yourself to leap past its teeth and down the depths of its throat into the dark pit of its stomach.

    When the darkness engulfs you and all you have left is the fire and the sword, your courage will carry you to whatever end awaits.

    And whatever that end may be, we’ll all see you on the other side soon enough.

  • Buffy  says:

    Thank you, Gigahound, for expressing your thoughts so well. I am so pleased that you were able to obtain a diagnosis and treatment, finally. I’m sorry that you lost so much before you found your answers – but I am pleased you didn’t lose those things which were most precious.

    Because of Michy, my sleep apnea was diagnosed and treated. Like you, I was experiencing clinical depression, metabolic shutdown, constant fatigue, and overall poor health until Michy pushed me to pursue the issues with my doctor (leading to a sleep study). I was dying by inches, literally.

    I’ve had CPAP treatment for 7.5 months now. In addition, I am treating hypothyroid with dessicated thyroid, supporting my adrenal glands, changing my diet, increasing my exercise, and slowly weaning off of an antidepressant. It’s a slow process, but I am regaining my health, stamina, vitality, and peace. It allows me to help support Michy in her quest, now.

    You’re right. Michy is brave. She’s also human, so sometimes she’s afraid or angry or uncertain… but somehow, the courage manages to win out. I truly admire that about her, also.

  • Catia  says:

    Please visit a website for Addison’s support

    http://www.addisonssupport.com

    Go to the forum & please read

    There are many of us with Adrenal Insufficiency & are sharing info–there is a ton of knowledge–peer reviewed cited texts, & info from Dr’s we see.

    Many of us are in varying stages of DX–most are on replacement steroids–there is a place for you–there’s a LOT of info there —

    There IS an answer for you somewhere, this site isn’t some BS site either.

    No one will try to sell you BS suppliments or garbage like that–just a big group of us all trying to figure out adrenal insufficiency & it’s various faces–We are all dealing with the same thing. We share our info & there’s a TON of reference material–come & take a read, & if you feel comfy–join in & ask questions–the answers are out there!!!

    Please know you are NOT alone.

    I accidentally came across your blog while doing a search re:ACTH Stims
    I mayself have has 2 of them in 6 months, and am doing various other testing at the moment.

    • admin  says:

      Catia, thanks for the link. I’ve actually been on that site and read so much valuable information there. It’s where I found out about fludricortisone, which was a big disaster for me, but it was something I took to my doc and asked about.

      I hadn’t been back in a while, so thank you for reminding me… I hope others who might stumble upon the blog will go there as well, because there are some great people who are very giving of information and time.

      I hope you are feeling better and better…

      Love and stuff,
      Michy

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