The Trauma of Navigating Doctors with Chronic Illness

The Trauma of Navigating Doctors with Chronic Illness

Finally getting a diagnosis

has kind of opened up a can of worms for me. It has been validating for obvious reasons, but also for less obvious reasons. It has also brought up a lot of issues that I’d not considered before, or not really allowed myself to explore. When you are sick chronically, from childhood, and doctors, your entire life dismiss, invalidate, disbelieve, and degrade you, you can’t help but internalize that. Even though you know you’re sick, you start to internalize their consistent message that you are not sick and that you’re just a whiner or fat and depressed and either way, it’s all in your head. When that has been your experience your entire life, you start to disbelieve your own body and your own experiences. When you have that much trauma, and yes, it is trauma, surrounding doctors, not only do you start to internalize it, which has it’s own very real set of repercussions, but you also start to always downplay your symptoms as to not frustrate or upset the doctors in any way. You kiss their butt. You agree with them when you know they’re wrong and very gently and politely offer that you are not a professional and so it might be totally off, but… You handle things in life as they come, EXCEPT with doctors. You are no longer able to advocate for yourself because you’re so afraid of backlash. You’re so used to being told no and that you’re fine, that you no longer ask for tests, and stop going to the doctor at all for long periods of time, because what is the point? It’s just traumatic and awful. Nothing is accomplished.

That is an aside…

…to the actual medical issues. That’s a battle on top of the physical and mental battle of chronic illness. For me, undiagnosed MS for 30 years. Can you even imagine living your entire life with fatigue? Even as a child? Can you imagine not knowing you have fatigue and wondering your ENTIRE life why you can’t do what everyone else can do? Why you’re not able to go to school AND have a job without one or both completely suffering. Why you never were able to do more than one or maybe two things in a day, even at your very best. Why you struggle so much with things that don’t make sense to struggle with. While all the while being told by doctors that either you’re a faker or a hypochondriac who needs to sleep and lose weight. While never getting help for your medical issues. I can, because that’s my story.

I have had two doctors, different practices, different cities, both women, tell me that it was okay, and that I’m still pretty. As in, in spite of my weight gain, I was still pretty, so to hell with the symptoms. I had a doctor, right before my MRI and diagnosis, bring up MS four times in the first visit. He was floored that I’d not had an MRI, and mentioned in three times. I hadn’t considered MS before then. We thought Lupus. I told him that what he said made sense and I’d like to have an MRI to rule out or diagnose. He denied me an MRI and told me he was sure I don’t have MS. I had an ophthalmologist tell me, despite my incredibly diminished peripheral vision in my left eye, that I was fine but that he’d recommend an MRI, UNTIL I was excited about that and told him I’d wanted one but my doctor had refused it. He scolded me for questioning the doctor. I. Am. Not. Joking. A month later I was diagnosed with MS after getting an MRI by kind of a fluke. I have had abdominal/gastrointestinal issues for over a decade…

Guess how many colonoscopies I’ve had…

ZERO. My rheumatologist became my primary and ordered one for me, so I’ll have one this year. Guess how many abdominal CT scans I’ve had, aside from the ER when I had an emergency appendectomy. ZERO until last week, BECAUSE the one and only doctor who has ever cared and has ever done their job (I now also have an amazing MS specialist neurologist who is AMAZING and who we love), is finally my primary and ordered it. You know what he said “What was going on? Everyone must have just written you off as a whiner. It doesn’t make any sense.” Ding ding ding. But the vast majority of people with chronic illness, especially autoimmune, and especially women, are largely dismissed and invalidated by doctors. They don’t get the treatment they need and deserve, and they have to fight nonstop, tooth and nail, just to get a diagnosis. It’s not okay. And there is no recourse for being so mistreated and having doctors refuse to do their jobs. It’s really disheartening. But I am so, so happy to have my two doctors who are truly incredible and who I actually trust. There ARE doctors out there who are good and who care about their patients. It’s just really ridiculously hard to find them.

Having a Chronic Illness…

When you are dealing with chronic illness one thing is a guarantee: you will be dismissed, invalidated, and disbelieved. You will be told by people who have absolutely no business practicing medicine (the vast majority of doctors) that you are fine. That there’s nothing wrong with you. That it’s all in your head. Or that you’re just fat (the BMI chart can rot in hell) and/or depressed, and these diabetes medications (when you’re not and never have been diabetic) and antidepressants will be all you need, since you’re just fat and depressed and the diabetes meds will cause weight loss and the antidepressants will make you stop fighting for a diagnosis. I sound jaded, don’t I? I absolutely am. And have every single reason to be, and I have zero apologies about it. Here’s a little note to all but ONE doctor I’ve ever had: DO YOUR JOB.

It’s not Just the Doctors…

What’s also interesting is watching people go out of their way to dismiss what’s happening to you. Even the people who “believe” you tend to say things like “Well, you don’t even know what it is. It might just go away.” Nope, it actually won’t. And what you said wasn’t supportive or helpful, it was dismissive and hurtful. And then there are people who don’t believe you and say little nasty remarks to undermine you and your health to others. They may mock your sanity. They may roll their eyes, hinting that they think you’re making it up. That’s toxic. That’s INCREDIBLY toxic. Which means those people are toxic. Which means you should drop them like a hot potato. Because life is too short to put up with people who are bad to you. To put up with people who are toxic. To put up with people who are cruel and nasty. And it doesn’t matter if they’re family or if they’re a lifelong friend, they’re toxic and you owe it to yourself and your family to peace out from their garbage.

It Can Be Lonely…

I’ve also learned how lonely it is. You finally get a diagnosis and don’t really want to tell people because you know some will be like “Oh, no biggie! You’ve got this! This won’t slow you down!” And you know they think they’re being positive and supportive, but it really just makes you want to scream “NO! YOU HAVE NO IDEA WHAT THIS IS LIKE! My life is not what it used to be and I’m having a really hard time and I don’t want to have to deal with your feelings about it or have to pretend your over the top positivity is appreciated as to not offend you.” And then there are people who will still doubt you. Or believe your symptoms aren’t really as bad as they are. Or that you’re milking it. And then you have people you thought you’d be able to lean on in this wild time, only to have them pretty clearly put up blinders and walls. Remember that just because YOU would be supportive, doesn’t mean others will be. You will also find support in places you never expected.

But, You Can Breathe…

You also realize that you can breathe for a second. You’ve been so invalidated your entire life that you questioned yourself constantly. About everything. You knew you were sick, but part of you wondered if you somehow caused it. Or if you could push through if you just tried harder. Or if maybe it’s not as bad as you think it is. Or maybe you really are just making it all up. And now you have confirmation, and you can cut yourself a freaking break for a second. You really SHOULDN’T have been driving. You really DID need to rest more. You really CAN’T function. It’s validation to trust yourself. How sad that we have been so programmed to disbelieve our own experiences and our own bodies. Our medical industry should be absolutely ashamed. They’re not. Go to any MS or Lupus support group on FB and you’ll encounter story after story just like mine. It’s truly disgusting.

Diagnosis…

I have a diagnosis. After FINALLY getting an MRI, I learned that I have 20-30 lesions on my brain, and 6 on my cervical spine (I also have a bulging disc, which runs in my family, and I expected). I have MS. I don’t know which kind. I have the BEST doctor in the entire world, and my husband and I love him probably more than he’s comfortable with, but he’s why I have a diagnosis. And he started steroid infusions (1000mg) for three consecutive days THAT day. I’ll go back in a couple of days to see if the steroids had any impact on my cognitive symptoms (so far, no). There’s a decent chance we’ll still have to fight the neurologists on the diagnosis because for some reason doctors REALLY don’t like diagnosing things that aren’t crystal clear black and white textbook. While my lesions leave little question, we still are worried we have more fighting to do. We’ll cross that bridge when we get to it. But I really do want to know what kind of MS I have. Based on the number of lesions and the number of neurological and cognitive symptoms I have, it’s unlikely it’s RRMS, but doctors often want to diagnose that one regardless, first. So, I just have to wait and see. Which is hard for me. I want answers! I have so.many.questions.

 

I mentioned today that dealing with all of this is like trying to put together a puzzle, but all of the pieces are the same color. And there are some extra pieces, and also some pieces missing, but I’m supposed to figure it out without help. I realize that sounds dramatic, but it’s a pretty perfect analogy for the pursuit of a diagnosis with chronic illness.

Nothing I said, save about the doctors, is in regard to specific people, and I truly hope no one takes offense to the things I have said. I know it can seem harsh or ungrateful, but this is to speak to others going through the same thing, as well as give some insight to those around them, and what may be unhelpful to your friend or loved one.

Negativity Doesn’t Have a Place Here…

Negativity Doesn’t Have a Place Here…

Negativity doesn’t have a place here… Nope, I’m not letting anyone dull my sparkle. It still amazes me that some people are so spiteful and hostile and full of hate. Especially when it’s completely without cause. It’s unfortunate that people like that exist, and even more unfortunate when you don’t have a choice and have to deal with them. Even more so when they make it a goal to complicate your life and do harm to your familial unit. But I’m not letting that nastiness have a home here. From now on, I’m bulletproof. I’m not allowing other people’s hatefulness to impact my health or well being, anymore. My life is really good. I have three beautiful children, I’m married to the most amazing partner in the world, I have an amazing family, wonderful friends, and I’m just not going to allow anyone who is permanently miserable and incapable of true happiness drag me or my family down with them.

I realize this deviates quite a bit from my usual content, but not everything is sunshine and rainbows, and I have some truly absurd and out of control things I have to deal with. It actually was a big cause of my autoimmune disease flare ups, and ulitmately my pretty drastic weight loss. Aside from a recent flare up (turns out I now have photosensitivity), I have been doing incredibly well on LDN. I workout three days a week. I do yoga about 5 days a week. And I’ve started Qigong, which is a magical practice everyone should employ. I make it a goal to try to be at peace. Life has not been easy in many regards, and I finally have a supportive and amazing partner and this wonderful life. I cannot allow someone else’s lies and malice to impact me. I choose to rise above. Which isn’t easy when someone is so disgustingly hostile and malicious and speaks solely in lies, but I’m learning. I’m using exercise, yoga, and quigong, as well as essential oils, meditation, and deep breathing to just stop giving a crap what people who are hopelessly obessed with me do and say.

It becomes very disheartneing when we see flagrant injustice. When we watch horrible people be able to do horrible things without consequence, especially when their actions hurt other people. But karma is real. Whether that means that people will face consequences at some point, or whether it just is that they live truly miserable and pathetic lives, there is some karmatic justice there.

Life is far too short, and far too good, to allow anyone to dull your sparkle. Period. Let them foam at the mouth. Let them bark a vicious bark. Let them believe their own malicious lies. It doesn’t matter. The truth matters. Your family matters. Your health matters. Your happiness matters. But someone else’s negativity doesn’t matter. It may seem like it does, but it really truly doesn’t. Let them make fools of themselves whilst simultaneously patting themselves on that back and buying into their own garbage. YOU know whats right and true and good. And that’s what matters. YOU don’t need to give anyone else’s crap another second of your brain time. Some people are just nasty. You wanting them to not be horrible won’t change that. Nothing you do will change that. So just let it go. Laugh at how ridiculous it all is. Laugh at how pathetic it is. Maybe say a little prayer for them, because Lord knows they need some serious help. And then don’t think about it again.
My Hysterectomy at age 35

My Hysterectomy at age 35

 

 

I had a hysterectomy. It’s still a little surreal, to be honest. I’m going to share a bit about my experience in getting to the point of a hysterectomy, as well as my experience with the surgery itself, and my recovery thus far. Please note that this is not medical advice, and should not be considered such. I am not a doctor, and am not diagnosing or treating here. I am simply sharing my experience and what has worked for me.

My journey toward a hysterectomy began after my youngest was born. She turned 2 a few months ago. When she was still an infant, I felt like my uterus just never went back to what it was supposed to after she was born. It didn’t feel like it was in the right spot and didn’t feel like it was the right size. I also dealt with discomfort, and sometimes, pain. I also had some spotting on a few occasions. Of course, as is the case for most people and with most doctors (and this isn’t even a dig, as I really do like my doctor, and in her defense, she’s not an OBGYN and did order a transvaginal ultrasound for me to look at my cervix), I was told that’s not actually possible. Since I had the wand ultrasound and everything with my cervix came back fine, I pretty much dropped it. I mean, I had wanted information about my uterus, not my cervix, but I saw the futility in trying to pursue that.

 

The pain continued to worsen, but not horrifically. Enough that I was worried that it could be something scary, though. I found a new OBGYN (I wasn’t a fan of my old one, which is why I didn’t go to her with my uterus woes. I hemorrhaged a month or two after having my daughter, and her office didn’t care. Wouldn’t see me. Told me to set up an appointment for six weeks out. I already wasn’t a fan, but that sealed it for me), and she is incredible. She immediately scheduled an ultrasound, one that looked at my uterus. Sure enough, my uterus was notably enlarged. She told me that it was probably adenomyosis (basically endometriosis, but rather than embedding outside of the uterus, the endometrial tissue embeds into the uterine wall), but that the only way to diagnose with certainty is to do surgery to take a sample. Since my pain, at that point, wasn’t horrific, I opted to not do that. She told me that typically hormone birth control pills are prescribed for adenomyosis. I declined. I think, in general, hormonal birth control is horrible. Messing with hormones is likely why so many women have so many health issues, but also, when I was on birth control pills, I bled nonstop. Nonstop. It was awful. And I tried several different kinds. I had horrible side effects with the paragard, as well. I’ve also spent MANY years working to balance my hormones and have my body work as effectively and normally as possible. So, there wasn’t a chance in the world that I’d risk all of that to “try” birth control pills.

We basically left it as wait and see. After a few months my pain worsened and became more frequent. Then I started getting wrap around pain. I did a ton of research, and found that my best, and pretty much only, bet was to have that bad boy removed. The thing is, most women who suffer with this and endometriosis have a huge fight on their hands to try to get a hysterectomy. Many doctors just won’t do it (so much for body autonomy, eh?), and even if they will, often insurance will stop it dead in its tracks (so great how insurance companies, not doctors, make medical decisions). She seemed pretty unphased by my asking. She scheduled an exploratory laparoscopy to look and see what was in there. Once it was scheduled a nurse called and went over things with me. She mentioned that the doctor would be burning any endometriosis she found in there while she was exploring. That got me thinking that I’d rather have my hysterectomy and endometriosis (if she found any) burned at the same time, not have two separate surgeries with two separate recoveries. So, I scheduled another appointment to ask for a hysterectomy straight up. I took my husband with me for support and to stand up for me if there was pushback (I’d had a LOT of pushback from my old OB about my VBAC and various other things, and for some reason when my husband was there and stood up for me, she didn’t push back), even though I’d had nothing but great experiences with this doctor. So many women are told no that I wanted to be prepared. To my delight, there was no pushback at all (have I mentioned she’s AWESOME?). And she had her office start the scheduling of the surgery!
Recovering with my littlest one
Now, when you know you’re going to have surgery, and you have to wait weeks to find out your date, and there’s just a lot of time, you start to second guess your decision. But my body decided to make it crystal clear for me by rapidly increasing the pain level and duration. I was having constant pain. It never stopped. It ebbed and flowed in intensity, but it was always there. I also started having trouble with my bladder and bowels, and thought it was either my monstrous uterus pressing against them, or endometriosis. So any time I’d start to second guess myself, my constant pain and inability to use the bathroom were great little reminders that I was doing the right thing, even though recovery with a two year old in tow would be a bit of a challenge.

I had my surgery. It was a much shorter surgery than she expected, as there wound up being no endometriosis. It was a laparoscopic robot assist vaginal hysterectomy, also removing my cervix and fallopian tubes, but leaving my ovaries. My uterus was more than double the size it should have been, and was “boggy,” or squishy. My uterus was sent in for testing, and thankfully no cancer or anything else scary was found. After surgery I went to a recovery room. Laparoscopic hysterectomies are outpatient surgery, so I sat in a chair with the most glorious hospital gown that hooks to a tube and heats the entire gown, while I waited for my husband to arrive. To my happy surprise (surprise mostly because I was drugged and forgot that my dad was coming), my dad walked in with my husband. I can’t even tell you how happy I was to see them!

I was nauseous, but I had a neat little patch behind my ear for nausea, so I didn’t wind up vomiting, which was great. I did have a hard time eating, though. After a while, the nurse informed me that if I couldn’t get my pain level lower, use the bathroom, eat and keep it down, and get hydrated, I’d have to be admitted and spend the night. I was devastated. My doctor came in to visit and let us know she was advocating for me to be released. The nurse increased my IV drip to try to hydrate me. I slowly worked at eating a fruit cup. Finally, the fruit cup was gone, my IV bag was empty, and I successfully used the bathroom! I was free!

Recovery has been a bit of a trip. My doctor did a great job of getting the gas out, and I walked a decent amount the first couple of days after surgery, so I wound up not really having any gas pain. When I had my appendectomy five months ago, the gas pain was unbearable in my shoulders, and lasted a solid two weeks. I am so grateful that I didn’t deal with that this time around. That said, I’d convinced myself the recovery would be about the same. It’s not. It’s not the same at all.

 

I knew I’d be swollen and bloated, but I didn’t expect to feel so fragile and like my insides could just fall out at any moment. I absolutely hate having anything touch my abdomen, so a compression belt wasn’t even on my radar. Except…the feeling didn’t go away. After 3 days of feeling like that, I ordered a compression belt. It was a game changer. I can’t even believe what a difference it makes. My swelling went down dramatically using it for just one day. And it helps SO much with pain/soreness. I thought it might help a little with the swelling and help me feel more secure, I wasn’t expecting the dramatic results with the swelling, and definitely wasn’t expecting it to alleviate pain the way it does. I wear it all night every night, but only wear it for a few hours at a time during the day. When I get sore, I put it on and it helps immediately. (photo is 1 week post op)

Aside from the bloating and soreness (the pain really hasn’t been bad at all), recovery is kind of a bear. I’m incredibly wiped incredibly quickly. I need to lay down to recover from showering. I’m only up for a few hours at a time, at most, and just sitting around exhausts me and I have to lay down. I can’t lift anything. I can’t drive. I’m sore. If I dare do anything even remotely physical, I wind up completely wiped and extra sore. It’s frustrating and I feel like a giant burden all of the time. I’m incredibly lucky to have my parents and my aunt helping with my two year old. They watch her during the day while my husband is at work. They also pick up my older daughter from school every day. It is very frustrating and almost embarrassing to not be able to do anything, but I am so, so thankful that I have the support and help that I do. I don’t know how anyone could have this surgery with a toddler without having help like this.
My two year old has been frustrated with my not being able to pick her up, and my 10 year old worries about me constantly. My husband is doing EVERYTHING, and I don’t even know how he does it all. He’s amazing. And is the most supportive and encouraging partner, ever. I know he’s exhausted and frustrated, but he always treats me with love and kindness, and is always accommodating my needs right now. I feel like an infant, really.

As is typically the case, this is quite long winded. But the moral of the story here is that adenomyosis is pretty brutal. My hysterectomy went very well. My recovery is very, very slow, but going well. And GET A COMPRESSION BELT IF YOU’RE HAVING A HYSTERECTOMY. Yes, I just yelled that. But the compression belt is magical and you need it and your life will be so much better with it, trust me. Now, I try to patiently wait while I recover. It will be nice to get some energy back, hopefully sometimes very soon. For now, I’ll respect my body’s limitations and spend my days resting and healing.

Updates on LDN (Low Dose Naltrexone)

Updates on LDN (Low Dose Naltrexone)

Just a relatively quick update on my experience so far with LDN (Low Dose Naltrexnone). Summing up what my experiences have been so far, what my goals are, what my hopes are, and some things coming up for me. Please don’t hesitate to comment here, or send me an email if you have any questions about LDN. I’m not a doctor and do not give out medical advice, but I can answer questions about my experiences.

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