#but all the lupus tests came back negative

[healingheartdogs]

It's so funny looking on my patient portal for my doctors and seeing "patient looks well nourished" on all my visit summaries when it is documented by my blood work that I am, in fact, very much NOT well nourished and have been prescribed multiple high dose supplements now to make up for how malnourished I actually am.

[catboygirlboss]

not to be disabled on main but my back feels like an egg that’s hatching and god knows what fucking creature will emerge

[myhealingera]

Two weeks after this photo was taken, I received a phone call that nobody ever wants to receive.

I was dealing with a slew of health issues: an inability to lose weight, hair loss, swollen lymph nodes, fatigue so intense that getting out of bed felt like a miracle, and severe brain fog. My joints were in so much pain that I found myself using a heating pad for most of the day.

I consulted my aunt, who is a pediatrician, and she reviewed my recent blood work. She observed that my TSH levels were consistently borderline high, often surpassing the normal threshold. Encouraged by her insight, I visited my OBGYN and shared my symptoms. She ordered hormone testing and referred me to a rheumatologist, given that lupus runs in my family. The results indicated elevated TSH, DHEA, and C-reactive protein levels.

I then saw a remarkable rheumatologist who conducted over 120 tests. All came back normal except for my thyroid antibodies, and I was diagnosed with arthritis in my hands. Around this time, my neck began to swell, feeling as though something was stuck in my throat. My primary care physician scheduled an ultrasound, which revealed swelling in my neck and a lymph node, and identified a nodule or "ectopic" tissue.

Returning to my primary care doctor, I was told my lab results were normal and advised to follow up in a year, despite continuing to experience swollen lymph nodes and being told that the neck nodule was unrelated to the swelling. At this point had been to urgent care 3 times, completed 3 rounds of steroids, a z-pack, and tested negative for mono, Covid, and strep.

Despite my tendency to avoid conflict, something felt off, and I knew I wasn't okay.

I requested a referral to an endocrinologist, which I received, but they couldn't see me until after Christmas. Not wanting to wait, I found another endocrinologist who could see me on Halloween. At my first appointment, I was diagnosed with Hashimoto’s thyroiditis and hypothyroidism. She ordered a biopsy "to be safe," emphasizing that a finding warrants investigation. Even at the hospital for my biopsy, the PA questioned its necessity given my primary care's advice to wait a year.

On 12/22, my endocrinologist informed me that the biopsy results were suspicious for thyroid carcinoma. I returned on 1/5 to discuss the findings.

They had sent my sample for Afirma testing, a genetic test for medullary thyroid cancer, due to the unusual results and the aggressive nature of the potential cancer.

I was then referred to an ENT, who suspected the nodule might actually be a lymph node. A CT scan confirmed this suspicion, revealing a lymph node suspicious for thyroid cancer, yet with no nodules on my thyroid itself.

The decision was made to remove the lymph node, with intraoperative pathology consultation to decide whether to also remove the thyroid.

On 2/24, the lymph node was removed, but pathology was indeterminate, leading to the decision not to remove the thyroid.

The following week, I was informed that my results had been sent to a larger university hospital for further analysis and a second opinion, an ominous sign according to my ENT.

Ultimately, it was confirmed as papillary thyroid cancer that had begun to metastasize to the lymph nodes, indicating occult thyroid cancer, typically undetected until it spreads to the lymph nodes. Likely, there are microcarcinomas on my thyroid undetectable by imaging. Thus, another surgery is required.

My complete thyroidectomy is scheduled for 4/24.

Honestly, none of this truly sank in until I received a call from the hospital's oncology department to schedule a radiation consultation for post-surgery RAI treatment.

It’s been an incredibly tough start to the year, to say the least.

[beesmygod]

i haven't been keeping track. are you a werewolf now (lupus) or not

because nothing can ever be clear cut and simple ever in my life: my blood test came back negative for the ana screen. despite this, the doctor insisted i see a rheumatologist, who seems to be generally unconvinced. but he ordered another round of more thorough blood tests that will take FOREVER to get back and i havent done them yet bc life is a nightmare forever.

meanwhile, the rash on my face has never touched the nasolabial folds in the months i've had it, my joints are visibly swelling (im still convincing myself of this bc i keep talking myself out of it like "my body is probably just shaped weird" or "you're looking too much into it") and i get itchy on the back of my knuckles when i go outside in this weather. what the fuck!!!

look at my normal wrist:

look at the one went apeshit today. its fine now?? i took two tylenol a few hours ago. like its not massive but its there. right.

and its not repetitive stress because it moves. it just happens to be on my dominant wrist tonight. trust me, its different. and this is consistent wherever it goes.

sometimes it lasts a few days, sometimes just a few hours (like today). i'd give it a 4-5 on the pain scale but its just that its a throbbing pain so you can't even just tune it out. and it's always the stupidest joints??? the wrist has been the most normal one so far. the joint at the base of my thumb on my left hand beefed up and got painful for no reason about a week ago. then my farthest toe joint (so not the gout one) decided it was its turn to have a go at getting my ass.

i dont know. i thought it was fucking normal for everyone to hurt all the fucking time for no reason. like id be in a classroom like "ooerg my shoulder is throbbing for minutes to hours to days for no reason...just nerves misfiring i guess". i thought i was just worse at dealing with it than everyone else bc i thought they just ignored it

[poprockrenaissance]

Test Results: ANA Pattern - Value : Nuclear, Speckled-Abnormal / Titer Value: 1:80 High

I'm scared. I thought all of my blood test results to rule out autoimmune diseases were going to come back normal... but two of them were delayed and came back the day after my follow up appointment with the pain specialist. He was going to give me a diagnosis of fibromyalgia (for now) as I fit the criteria, but now that these ANA test results are back showing ABNORMAL, it is very likely that I *DO* have an autoimmune disease like Lupus, rheumatoid arthritis, etc. After doing a little research on my own and talking to my doctor again, he agrees that the most likely contender could be... MS. Multiple Sclerosis. All of my other tests came back negative and I don't fit any of the other hallmark symptoms for things like Lupus. But I do fit MS symptoms, textbook at this point. My symptoms started after my concussion in October 2022, and MS has been linked to being triggered by head trauma. I've known there was something wrong with my body for a long time. Even before I hit my head. But ever since the beginning of 2023, I knew my vessel was malfunctioning. Nobody listened. My PCP failed me. My therapist failed me. My psychiatrist failed me. My Neurologist failed me. I AM SO SICK AND TIRED OF WOMEN BEING GASLIT AND DISMISSED WHEN THEY SEEK MEDICAL CARE. SO MANY PEOPLE DIE UNNECESSARILY DUE TO INCOMPETANT, MISOGYNISTIC, RACIST, and CORRUPT DOCTORS. AMERICA'S HEALTHCARE SYSTEM IS A LITERAL JOKE. I won't have answers till I see my new FEMALE neurologist in April and see a few more specialists and get more testing. But I know intuitively and am prepared for this battle. Everything I have been doing the past few years was all leading up to this. It is my purpose to spread the word and educate people on how important it is to fight for and advocate for the health of yourself and your loved ones. Don't just take one doctor's opinion for face value, especially if you felt like they didn't listen to you or their diagnosis (or lack thereof) feels wrong. The sad truth is the American healthcare system has become a GAME that involves A LOT OF HARD WORK and LUCK to actually get the right providers and care that you need. Its hard enough asking for help, yet people are expected to call dozens of offices just to get put on waitlists or find out the provider is terrible and you need to switch. I am angry. I am so angry at the world sometimes. I am mourning my youth. Mourning my family that keeps growing smaller and smaller every year. Mourning the heartbreak and devastation happening in every corner of the universe. I am not ready to slow down. I'm almost 32... I am just GETTING STARTED! Right now I have to believe in my own power and ability to make the changes necessary to live a healthy and active and abundant life, even if I might have more physical challenges than I was expecting. My dad had a wooden leg my whole life, amputation from the knee down after a motorcycle accident. I watched him walk through pain everywhere. He REFUSED to stop living life. Even when he got cancer and was weak and sick and miserable... he still kept going for the sake of LIVING. I miss him so much and every time I am in pain and start feeling sad, I will think of him. "I've got two legs". Bring it on autoimmune disease. Buck the fuck up. READY... SET.......... GO!!!!!!!!!

[themellowdeviant]

One of the hardest things that I've had to embrace in my life is that while I will be as healthy as I can be, I'm not going to be able to do most things ever again in my life.

The adage of you don't know what you had until you lose it, it generally rings very true for me. I'm not as scared as I used to be earlier on during this process.

Am I still very afraid of just randomly falling over and dropping dead from a heart attack? Yes I am. But, I do my best not to let that fear ever take precedence in my life.

My luck finally ran out when it came to my health. I genuinely didn't do myself any favors. All the late nights, all the injuries, all the booze, all the drugs, all of it. Throughout the entirety of my twenties I fucked up bad, and was involved with bad people and that made me even worse. Now being in the dawn of my thirties, having a stable job and a stable place to live, everything feels so different. I wish I could talk to me 10 years ago, at 20.

I wish I could tell that person to stop it. Stop trying to kill yourself. You have no idea what's coming, the good and the bad. Please stop. Be better for yourself, be better for the beautiful woman who takes you into her life.

I wish I could tell them everything. I wish they knew that the pain they felt inside will eventually stop.

I wish I could make them believe that everything would be all right.

-----

Currently, I have a diagnosis of we don't know. I completed many different blood tests, MRIs, x-rays, everything in between. Sadly, like my partner says, the human body is so infinitely complex that even though we can find fixes for a lot of things they're still a billion more that we don't know about. Unfortunately mine just so happens to be in that grouping of billion. What we know is that I have a ANA profile of 1:160, homogeneous staining. My white blood cell count and my platelet count are consistently elevated but not too an alarming rate. Tested negative for lupus, RA, s jorgens, and TB. I suffer from costochondritis, the inflammation of the connective tissues in your rib cage. Makes it feel like you're having a heart attack when it's at its worst. We also think that I am suffering from arthritis in both hip joints, lower back, both shoulders, and possibly within my rib cage. I also deal with fatigue issues, if I physically overdo it, my chest will immediately tighten up I'll begin wheezing, blood rushes in my ears and then I have to sit down immediately or else I get very light-headed. It is incredibly limiting.

We don't know if and when it'll go away, we're trying a combination of NSAIDS to see if we can manage my symptoms as best as we can.

Having a chronic illness like this drains my mental health as well. I feel bad about everything. I feel bad that I can't do as much as I can currently, but I'm trying.

Everything will be all right. My younger self didn't believe it then but I sure as hell believe it now. I'm too determined for it to not be all right and for me to not share the good life with my partner.

Everything will be all right.

[handweavers]

i'm getting a referral to a cfs/me specialist clinic near me though so i'm feeling hopeful with that, bc my symptoms are more in line with that than fibro although all the symptoms overlap lol but i experience PEM which is the main difference so i need to get my diagnoses properly addressed and dealt with so ik what's going on with me. i can't stand not knowing things/uncertainty and the level of care i'm getting atm is abysmal

[crippledpunks]

Could you do a post on what fibro is and what signs someone should look for if they suspect they have it? I don’t know much about firbo other than Google’s vague symptom list. I would rather hear it from someone who has it anyways. Hope you have a great day!

thank you for coming to me, i appreciate it! i really do!

fibro is a difficult thing to figure out if you have or not- when asking your doctors about it, they try to rule out everything else it could possibly be first before considering fibro. doctors will test for things like lupus, rheumatoid arthritis, other kinds of arthritis, sleep apnea, narcolepsy, and many other things.

finally when all these things are ruled out, you're considered for the fibromyalgia diagnosis. i received mine in 2016, after doing a lot of tests. i knew i had it from the start, because the symptoms are so specific. not everyone has access to all of this medical care, and i know a lot of you don't have the time to go through all of this testing for a clinical diagnosis.

if you suspect you may have fibromyalgia, these are the most important symptoms to consider:

1.) overall, widespread pain and tender points on your body. people with fibro experience an overall, widespread pain that can't be explained by anything else, however, we also experience specific tender points. these are points on specific points of your body that are painful to the touch, and often ambiently radiate pain outward into the surrounding areas. it's the skin, muscle, and other tissues that are in pain, not the joints, but they can cause pain to radiate into the joint areas.

here is a diagram of where these points are on the body:

you don't have to experience all of them. i personally experience most of them.

2.) fatigue that can't be explained by something else, that is persistent, and doesn't improve with sleep. not feeling rested after sleep was what lead me to seek care, because no matter how much i improved my sleep hygiene, my fatigue never lessened or went away. i even got tested for sleep apnea, and that came back negative.

3.) "brain fog", also known as "fibro fog". this is exactly what it sounds like- an extreme fogginess in your cognition that makes it difficult to function. i was experiencing this fog very badly when i was first seeking diagnosis. it comes and goes, some days i feel better, other days it's like my head is full of cotton, or like someone is in there running a fog machine.

4.) chronic migraines and consistent headaches that usually don't improve with sleep and often highly resistant to medication. i have a low- to mid-grade headache every single day. migraines are extremely common with me, even on days where, again, i've slept well. these headaches are crippling and always have been. i've been medicated for migraines since i was 15 years old.

5.) restless legs, joint stiffness, morning stiffness, and swelling and tingling in the hands and feet and aren't explained by anything else. the random swelling and tingling in my hands and feet used to stress me out because i was afraid it was related to my heart, but it's always completely random and goes away pretty abruptly.

fibromyalgia is also highly co-morbid with conditions such as post traumatic stress disorder, anxiety, depression, chronic fatigue syndrome, irritable bowel syndrome, and postural tachycardia syndrome.

i hope this was what you were looking for!

[awheckery]

so. uh.

cut for frank discussion of chronic illness and the serious failures of the american healthcare system. tw for fatphobia and gaslighting.

Last July, I got sick. It wasn’t too bad at first: some fatigue, body aches and a slightly elevated temp, until suddenly it was bad and I wound up in the ER. It took three rounds of steroids, a round of antibiotics and a more powerful inhaler to get my feet back under me, but I never fully recovered.

I didn’t talk about it here, except for answering an ask in October and blaming my lack of creative output on depression. It really, really wasn’t depression; it was my health progressively collapsing, one system after another until the avalanche of symptoms that flattened me just after New Year’s.

For the last four months, I’ve spiked a fever over 100°F nearly every single day. My joints hurt. My knuckles are knobbly and swollen, and occasionally my fingers are so painful and weak I’ve had to literally tape my pen to my hand at work. I get rashes at random that itch so badly I claw myself bloody. I overheat and have hot flashes in temperate rooms. The skin on my face and neck and shoulders turns red and hot to the touch, like I’m burning for hours with no immediately discernible provocation.

Some days, I wake up and I don’t have the strength to get out of bed. Some days I can’t wake up at all. I’ve slept through deafening alarms for hours, long enough for my phone battery to run out and die. I can only stand up for ten minutes a day without being hobbled by the effort, and every extra minute beyond that I pay for in hours spent bedbound by exhaustion and pain.

I keep losing words. I’ll arrive at the middle of a sentence and stumble to a halt, because the word I need isn’t there. It’s not true aphasia, and it’s not all the time. I comprehend written and verbal communication perfectly well, but I can’t get my own thoughts out without tripping over them.

I am, to quote a friend attending school to be a nurse practitioner, “a textbook case for SLE,” and I agree, but somehow I can’t pay a doctor to treat me seriously.

In January, I was referred to a rheumatologist after the bloodwork my PCP ordered indicated I had autoimmune activity of some kind.

To date, that’s my only test for anything that’s come out definitively positive for any kind of disease state at all. Ever. I tested negative for celiac disease on a technicality nine years ago, despite how specifically and intensely sick gluten makes me, so I was dismayed but not too surprised when follow-up bloodwork for lupus came back just barely inside the range of “normal.” Despite that, I wasn’t prepared to be jerked around as much as I have been.

The first rheumatologist I saw, back at the end of January, had barely been in the exam room for thirty seconds when I could see he’d already made up his mind about me. He was dismissive and perfunctory and condescending when he told me that “plenty of perfectly healthy people have positive ANA results,” and he referred me back to my PCP for an exercise program and antidepressants to treat my “fibromyalgia.”

Putting aside that I’m not a “perfectly healthy person,” I’m a Fat Lady living in America, and I’ve experienced medical fatphobia for decades at this point. You learn the key words and phrases pretty quickly, and “exercise program” has never not been a euphemism for “weight loss.” (Which is heavily ironic in this particular situation, because before I was Fat, I walked 2-3 miles a day for funsies and spent 15-20 hours in the gym every week. I only stopped because I somehow shredded both my ACLs in one summer. I’d love to get back to that if a rheumatologist could help me figure out how to be active and uninjured at the same time.)

I was frustrated after that first appointment, enough to request a referral to one of the best teaching hospitals in the country. Why not go to the best, right? There was a five month wait for an appointment, but I am stubborn, and I made use of the time by documenting every bullshit symptom my body threw at me. I have a daily symptom journal, full of subjective entries like my pain and fatigue levels, as well as objective entries like daily temperature changes and photos of my rashes and my burning face and my goddamn mouth ulcers.

I thought I had enough logged to be impossible to ignore, and then I saw the second rheumatologist three weeks ago, and the first sentence out of her mouth was the beginning of an interrogation on my blood pressure, and whether I was taking medication or if I was on a fucking exercise program for it. I tried to get the appointment back on track by sharing my symptom diary, and she turned back to my just-under-the-wire test results, and told me, “many healthy people have positive ANA results, it doesn’t mean anything without other positive test results for specific conditions.”

I said, “Healthy people don’t run a fever for months.”

And then she told me that a "fever is not associated with any of the conditions a rheumatologist treats." I was so startled by the confidence and authority with which she stated the lie that I was unable to speak to rouse a defense or contribute anything else for the rest of the appointment. After an insultingly brief examination, in which I never took my face mask off and she declined to look at any of my photos, she said that she “didn’t see anything that could be rheumatologically wrong with me.”

I asked her what she thought could be wrong with me, and she grudgingly admitted it’s possible, though rare to have an autoimmune disease and test negative for everything, so she would order more tests and refer me to appropriate specialists for my various symptoms. She ordered a referral to an infectious disease specialist for my fevers, and a referral to a dermatologist for my “rosacea” (that she’s assuming I have, because I would like to again note she did not see it, at no point did she actually look at my face or a photo of it), and a referral to an ENT for a salivary gland biopsy for my dry mouth, and a referral to a neurologist for my “stroke-like” memory and speech problems.

It was, all told, an unbearably shitty appointment. I cried in my car for an hour in the hospital parking garage so I wouldn’t do anything impulsive like lying down in traffic, and then I went home, cried some more, and went to bed for three days.

On the fourth day, I woke up enraged. It’s one thing to be blown off by a doctor when you’re just reporting symptoms without proof, it’s a wholly different thing for a doctor to ignore your proof and lie about diagnostic criteria to your face.

It’s hard enough not to think you’re crazy when your test results come back negative over and over; it’s that much harder after being told that your major concrete measurable symptom is diagnostically irrelevant, when it really, really isn’t.

(for the record, just going off the symptoms I can concretely prove I’ve experienced in the last week alone, I land a 16 on this chart, which is the most up-to-date, widely agreed-upon diagnostic criteria)

I have decided, for the moment, to play ball. I don’t have the energy to jump through all the hoops this rheumatologist wants, but I'm angry enough to drag myself through them. Tomorrow I’m supposed to see the infectious diseases specialist. On Wednesday I see the dermatologist. In two weeks I see the ENT, and I’ve got a neurology appointment tentatively scheduled for December.

I’m going to be blisteringly forthright with all of these doctors about why I’m there, and that I’m looking to exclude diagnoses other than the lupus I pretty obviously have. (Except with the ENT. Apparently they treat allergies, and I’d like to be able to go outside long enough to walk a dog, someday.)

I’m supposed to see this rheumatologist again at the end of November. Depending on how this week’s appointments go, I’m aiming to either move up my appointment with her when one becomes available, or just send a firm yet diplomatic email asking why the diagnostic criteria apply to everyone but me.

If anybody else has gotten through this fucking nightmare successfully, I’m open to suggestions, it’s not like it can get worse at this point.

[chronicallyskully]

So I'm fuming.

I had been switched by my insurance company from Remicade to Avsola (Avsola was cheaper and I had no problem trying it out unless it made me feel bad, only then did the insurance company say it's ok to change back, fine, ok.)

So I got my first Avsola infusion 4 months ago (I think that's around April if I counted right) and it did ok during the infusion, but I went 2 extra weeks without an infusion when I'm supposed to get one every 4 weeks, so I felt crappy for a little while.

About two weeks after my first Avsola infusion, my mom and I took my 4 year old niece out to a petting zoo for some quality time. We were outside around 30-40 minutes. And during our walk through I started itching on my face and arms. Mom and I figured it was because the animals licked me and maybe I was having a reaction to it. I mean I got red, rashy places, it itched for hours and got worse the more I was in the sun. I scratched one place above my eye open. I took some benadryl, stayed out of the sun, got a shower and went to bed early. It took about a week for all the redness to fully go away.

After my second one I went outside and waited about 10 minutes in the sun while my mom took pictures of a church since she was making the directory for it.

I got in the car after only 10 minutes in the sun and that big rashy red splotchy itchy mess came back, again for hours. Benadryl, shade and bed early again. Another week to calm it down.

So mom and I decided I should stay in the house or shade as much as possible, order strong sunscreen and wear pants and my Jean jacket when I went outside. I did that and it seemed to take care of it, I could tell when the sunscreen was wearing off because I would start getting red and itchy.

I went to see the dermatologist about it and showed pictures and explained how it happened and that all of this started after starting the Avsola infusions (all my other medications were older had been taking them over a year, this was the only new medication and all this happened before I started trying cbd oil). He immediately tested me for Lupus and Drug-Induced Lupus (I also have joint pain, headaches and extreme fatigue that he had factored into his possible diagnosis).

A week later the test results came back negative for Lupus, but positive for drug-induced Lupus. So my dermatologist sent the notes from the visit AND the notes from the testing that showed I had drug-induced Lupus and that he believes the Avsola is responsible and thinks it should be changed back right away.

I get a message from my GI (the one who prescribed the Remicade) and said that the PA (she works under my original GI and helps handle my visits and medications) doesn't want believe that the Avsola is responsible for my dermatology issues.

THE AVSOLA WEBSITE SAYS STOP TREATMENT OF AVSOLA IF SYMPTOMS OF A LUPUS-LIKE SYNDROME DEVELOP.

I am absolutely mind blown that I have to fight my doctors to get them to understand it's making me feel sicker.

I don't know if I should laugh or cry...

(I know some people leave comments in my posts and I want to communicate so bad, but this blog has had some connectivity problems with post chatting and I absolutely don't know how to fix it. I'm more than happy to try the private chat stuff if you have any suggestions or helpful tips to get through this. I'm so exhausted, I'm just so tired of having to fight for myself y'know?)

I can post pictures if people are curious what the rash looks like

[malissawithan-a]

Oh hi, long time no update. I blame the lateness of my kids’ bedtimes and the need to get Christmas shopping done. I’ve also avoided social media a bit lately, just feeling drained. Overall, life has been good and everyone is healthy at the moment so I’m grateful for that. Time for a big update since I haven’t really done much on here since October. 

-Halloween was really good. The weather was perfect and we brought our firepit to the front yard and had that going during the whole trick or treating time. We and a bunch of other neighbors all had tables with individual grab and go bags set up at the end of driveways and I’m totally for doing that again next year. It was great to just go table to table and not worry about ringing a doorbell, it also felt like way more neighbors were outside and friendly which was nice. Alice was a pirate and Lucy was a duck.

- We have 5 family birthdays during October-December and it’s just a lot. My MIL and BIL’s are 5 days apart and they’re both hard to find gifts for, they also fall the week of Thanksgiving so in past years it’s just been so much family time. This year was a little different obviously.

- At the end of October I went to see a dermatologist because I’ve been having some hair thinning issues for a few months now, since maybe May. Not bad, but more shedding than I should be seeing. She ran a bunch of my levels to try and figure out a root cause and one them came back abnormal so she referred me to a rheumatologist, who I saw a week ago. The good news is that I don’t have Lupus like the dermatologist made me fear that I did, the weird level is because of my existing hypothyroidism, but I don’t have a good answer for my hair loss. Trying a few topical treatments and going to find a new endocrinologist because my current one is crap and not taking this seriously. 

- Alex’s Grandpa tested positive for COVID a couple of weeks ago. They live in an old folk’s home and one of the housekeepers that cleaned their room must have had it, several other people there tested positive all at the same time.  He’s recovering well, was mostly just exhausted and had a bad headache for a couple of days. His Grandma also got it we think, but she tested negative at the time. They’ve only lived in this place since August of last year and it’s gone downhill pretty badly during COVID, lots of staff turnover and lots of issues with care. My in laws have decided to move them out and move them to a home in Tennessee where they’ll be closer to other family and where the weather is milder so they can be outside sooner than they would here. It was a hard decision but the right one, the timing is terrible though. 

- Alice is driving me up the wall, there’s been so much development in her understanding and ability to relay how she’s feeling (like asking me to apologize when I’ve hurt her feelings) but it’s coming across in a lot of tantrums right now. She also said “stupid mama” for the first time the other day so that was fun. The age of 3 hasn’t been terrible but it’s definitely been more challenging than other stages, she’s big enough to understand better and reason with but oh gosh does she want her way and protest when she doesn’t get it. It’s been a lot of fun though too, there’s a lot of sweet moments mixed in and most days are good ones (like always, the bad just stick out more in my mind). 

- Lucy is not such a baby anymore, she’s going to be 2 in February. She’s started doing 2-3 words sentences in the last couple of weeks and my favorite word from her right now is “elbow” because she pronounces it “belbow”. She’s very independent, she likes to try and do things by herself first and gets frustrated when it doesn’t always work out. The amount of times that she’s gotten upset over not getting a sock on by herself is up there. Her current favorite stuffed animal is Baby Yoda, she calls him “Baby!” and treats him very well. 

- My parents are talking about driving up for Christmas, supposedly in about a week’s time. They haven’t totally made up their minds yet but I’m really hoping that they do. This is their first holiday season after the loss of my brother and I would rather have them spend it with us than alone in their house. My dad does fall into the high risk category for COVID though so not traveling would be safer, it’s just a sucky decision to make overall. I know that the responsible choice would be to stay home but it’s really hard to tell them to do that in this circumstance.

- I turn 33 on the 19th and I’m okay with that, I have a feeling I’ll be fine up until I hit 35 and then I’m going to start being in denial over my age. I could be wrong about that though, I honestly have enjoyed being in my 30′s way more than my 20′s. 

I think that’s about it, at least for now. Lots of Christmas prep still going on because I was slow on ordering, I hate wrapping presents and would totally do bags if I could, but my kids love opening wrapped gifts so that’s not really an option for now. I hope all of you out there are doing okay, finding ways to enjoy this season!

[thebibliosphere]

Can you tell me how you got a diagnosis for MCAS? I have crohns, and very recently IST, and worsening asthma within the last couple months. I'm also allergic to everything under the sun. I cant shake the feeling that its all connected somehow, but my doc seems to care more about my sex life than my quality of life

I’m sorry to hear that, that sounds very stressful (and not to mention misdirected and possibly intrusive on your doc’s part). I was only able to get my diagnosis eventually, through sheer luck. The nutritionist I booked an appointment to see on a whim took one look at all my symptoms, asked me some pointed questions about my medical history, then told me she knew what it was because she had the same condition.

She told me she thought I had histamine intolerance (which I do), fiddled around with my already severely limited food intake which helped my symptoms drastically within a matter of weeks, and then my life took a bit of a scary and dark turn when the pernicious anemia caught up with me and I wound up seeing 8 different specialists in a week cause they all thought I either had lupus or cancer. During the course of seeing all these specialists, including an allergist who told me I had psychiatric problems and was imagining my symptoms (so fuck him) I saw a couple of other doctors who all listened to me, looked at my history and said, “I think you’re right, I think you have MCAS”.

So far I’ve tested negative for a lot of the basic testing, but that’s because MCAS is so fucking hard to test for, that unless you’re in an active flare, it won’t show up. I’ve been self-regulating my own triggers for so long, that when I did the blood test it came back fine, and my allergist refused to do the 24 hour urine test because he thinks I’m mistaking anxiety for anaphylaxis. The doctor who had to treat me in the ER last year for said anaphylaxis vehemently disagrees with him.

The only accurate way to test is through bone biopsy, which I haven’t done yet due to the risk of complications. The fact that I have a rare form of PoTS (Hyperadrenergic) and possibly some variant of EDS (diagnosis pending) all signify a mast cell problem, as does the fact that I responded to basic mast cell activation syndrome treatment. I’m seeing a mast cell specialist doctor in January, but my GP and all my other competent doctors all already agree I’m doing much better on basic MCAS treatment, primarily because I’ve stopped going into random anaphylaxis, which y’know, pretty big sign right there.

So usually what you want to do is get a referral to see an allergist and talk to them about all your symptoms. If they’re competent and up to date on the latest research, they will know that your tests coming back negative do not necessarily rule out MCAS, it just means you’re not having a flare right there in their office at that time. If they’re not, try and find another doctor.

There’s a resource on the mastcelldisease website here for anyone who has been trying and failing to find anyone who will listen:

http://www.mastcelldisease.com/physicians/

I hope that helps!

[ztafraternity]

Knowledge is Power | Survivor Story: Karen Rice

By Karen Rice (Gamma Epsilon Chapter alumna)

“Knowledge is power!” I heard that somewhat cliché statement many times as I progressed in my career in the cable industry. But those words took on new meaning at a personal level when it came to my health and my family’s journey with breast cancer.  

When I was diagnosed with breast cancer in 2008, I was already well-versed in being a medical mystery and no stranger to “experimental” diagnostic approaches and treatments. Having been diagnosed with Lupus at 26, I had spent years dealing with myriad symptoms that were ultimately attributed to my autoimmune condition. Through this experience, I learned the importance of educating myself and becoming my own health advocate.

Ten days after my 40th birthday, I had my first mammogram, and they found a suspicious lump. I was a busy working mom of a 2-year-old and 4-year-old, so when my biopsy came back as benign, I could have just let it go. But something just didn’t feel right.

I knew that 1 in 8 women will develop breast cancer in her lifetime, so I went into education and self-advocacy mode. I spoke with the radiologist who recommended an MRI-guided biopsy. This new, experimental diagnostic approach was not widely available, so I was glad to have the option. The biopsy identified two 2+ cm tumors/ductal carcinoma in situ (DCIS) in my right breast. I was “lucky” in that they found it early and I did not require radiation or chemotherapy, but I did have a right mastectomy and reconstruction.

Following my mastectomy, I had genetic counseling. I was only tested for BRCA, and my results were negative. Then in 2018, after a move to Denver, I started seeing an oncologist at a women’s practice and she recommended that I again have genetic counseling. I learned that testing was now available for many more genetic mutations. I was tested for 62 different mutations, and I found out I had a mutation called ATM, which can also cause breast cancer.

Then my challenges were to decide what to do with the information and to learn more about where the mutation came from. My mother was adopted, and my father was one of 13 children (who were all deceased by this point), so it was difficult to gather my family history. It was assumed because of family size and a history of cancer that it came from my father’s side.

To prove this assumption, my mom and sister also got tested. My sister’s test came back negative for all of the markers, but my mom tested positive for the BRCA mutation! This was a huge surprise, but it saved her life. She had just been diagnosed with cancer in one breast. With the knowledge that she was BRCA positive, she scheduled a bilateral mastectomy, and the pathology showed cancer was in both breasts. Armed with these genetic testing results, I saw a specialist and was prescribed Tamoxifen for five years as a preventative measure to minimize my risk of recurrence.

Many women delay or avoid having mammograms. Many women ignore their own health. Many women won’t agree to have genetic testing. The common factor is fear. As a widowed single parent, I live my life to the fullest and know it is critical to take care of myself and to be my own health advocate. I am a strong advocate of early detection and arming yourself with as much knowledge as possible. Knowledge is not only power, but knowledge is also empowering. Knowledge can reassure you, curb your fears and save your life. Live well, stay strong and Think Pink®!

___

Take charge of your own health, like Karen. The Assess Your Risk™ tool from Bright Pink® is a great place to start. Visit AssessYourRisk.org/ZTA, complete the short assessment and immediately receive personalized information regarding your risk for breast and ovarian cancer.

[unicorpseboi]

So in February I had a test to see if I had lupus, the pandemic hit, and I couldn’t get in to my doctors office until August. I found out I do, but since only one of the two lupus tests came back positive, it wasn’t currently hyperactive (and by currently I mean as of February) and that we would need to monitor it every six months. I was overdue, but couldn’t go in anywhere near me because the in network labs were closed for that particular doctor. After several months of playing phone tag with my dr’s office and several lab facilities, I gave up. I changed my primary because I couldn’t even get a check up scheduled and I had ran out of all of my meds, and I was over it.

I was excited to see this new doctor, if a bit nervous. I went over my medical history, and she heard the part about my immune tests that were just run at the beginning of the year and tells me no, she doesn’t think the positive means anything, and that in fact she thinks I have rheumatoid arthritis- despite the fact that I’ve tested negative for RA every time I’ve been checked, including the most recent test I had done in February. So now I’m being sent to three different specialists because this doctor doesn’t believe I could possibly have developed lupus despite getting a positive, and also won’t put my mind at ease by just going ahead with the lab screen to double check on that positive from the beginning of the year.

I’m so tired. Whatever I’m dealing with is causing such massive flare ups that I can’t sleep. I feel nauseated from the pain. The aches are unbearable. But I’m 23, what do I know about my own body? Hell I can’t even get any form of pain relief. “Take ibuprofen” okay gonna stop y there doc, cuz at the top of my file it says ALLERGY ALERT: IBUPROFEN and I know you aren’t just choosing to ignore those warnings. What’s that? Nothing else you can do for me then? Get bent.

[illnessanxiety]

Hypochondria During the Pandemic

Since quarantine started, I have experienced the worst health anxiety of my entire life. Worse than summer break in middle school when I thought I had a brain tumor, worse than Junior year when I thought I had lung cancer, and worse than Hawaii when I thought I had heart failure.

I can’t even begin to explain how much I’ve been suffering since being stuck at home. Of course, I've been concerned about coronavirus. But that is only one small part of the endless amount of diseases I’ve had the time to obsess over. Since March, I’ve convinced myself I have diabetes, ketoacidosis, a brain tumor, urinary tract infections, epilepsy, fibromyalgia, kidney failure, sarcoma, liposarcoma, botulism, rheumatic fever, an intestinal obstruction, lymphoma, leukemia, lupus, multiple sclerosis, meningitis, sepsis, staph infections, heart failure, anaphylaxis, mononucleosis, a pulmonary embolism, deep vein thrombosis, breast cancer, a brain-eating amoeba infection, systemic sclerosis, water intoxication, asthma, heat stroke, and an aneurysm, among many other things. Although these individual disease obsessions come and go, they always manage to leave their mark. In other words, at this current moment, I still feel like I could have a lot of these diseases -- no matter what the scans and blood tests say. 

I’ve been obsessing over preventing these dangerous diseases -- to the point that I can’t eat certain foods or do certain things anymore. For example, I find it very hard to use canned foods while I am cooking, as there is a risk of botulism. I often feel unsatisfied when washing my fruits and vegetables -- almost like I can never truly wash them enough. If I see mold or a small insect just on one fruit or vegetable in a container, I feel the urge to throw away the entire thing. When this pandemic is over, I’m not sure if I’ll ever be able to put my head under water ever again due to fear of brain-eating amoeba -- or if I’ll ever feel safe enough to be outside during the daytime for more than two or three hours due to fear of dangerous heat stroke. 

I have high hopes that my obsessive and intrusive thoughts will settle down once the pandemic is over and once I get busy again, but I am afraid that some of these irrational fears will never go away.

I wish I could find the humor in everything, but it’s all too terrifying. And it’s worse than you think. It’s not just “I have this disease.” It’s “I am 100% positive I have this disease and therefore I am going to change my lifestyle and diet to accommodate it, plan my future around it, and attempt to cope with my impending doom as it is too late to fix this.” For example, when I convinced myself I had diabetes I cut out all added sugars from my diet and I bought a test for ketoacidosis. It came back negative. At another point, I convinced myself I had sepsis from an undiagnosed kidney infection from an undiagnosed UTI. I bought a UTI test, cranberry pills, and a gallon of cranberry juice. Eventually, I got an actual UTI test and it came back negative. Another time, I convinced myself I had a deadly heart arrhythmia or possible heart damage from rheumatic fever from undiagnosed strep throat. I went to the doctor and I got an electrocardiogram. It came out normal. These obsessive thoughts control my life.

I either eat super healthy spinach soups in an effort to save myself, or I eat all of the sugar I want because I know it doesn’t matter anymore. Oftentimes I feel like no matter what I do, it is too late. 

I can’t tell you how many times I’ve sat on my bedroom floor or sat on the grass outside, staring up at the ceiling or the sky, trying to make sense of my life being cut short. I have spent almost every day throughout the past five months living as though there is not much time left. It is the worst feeling ever. I wouldn't wish it upon anybody. I am a person who truly loves life, no matter how hard it can get, and it is my worst fear to have it taken away from me prematurely. I’ve have many nights during which I do not sleep at all. I fear not waking up the next morning. 

This has been absolutely horrifying for me. I’ve wasted so much time and energy panicking over slight symptoms and researching deadly diseases -- probably between 2 and 16 hours per day, depending on the obsession. Some days I feel as though I am in a trance. I forget about anything else I have planned for that day, and I am sucked into the world of sickness. 

Unfortunately, even on a good day when I am not hyper-aware of a bodily function or focused on a particular symptom, my health is always in the back of my mind, and I can't help but always feel like there is something wrong with me. I take my temperature multiple times a day, I check my oxygen levels, I inspect the inside of my mouth, I analyze the skin on my legs, hands, and arms, and I even inspect my period blood and stool. From the beginning of 2020 to now, I suspect I've been to the doctor about twelve times. Seven times within the last two months. Though I wish I could go more often.

I’m hoping that through blogging, I can eventually recognize the patterns of my irrational thoughts, analyze triggers, and learn how to cope with them in the moment. 

[echoesofadventure]

I need to get this out of my brain and onto paper (or pixels if you will)

This is a physical health post, which obviously has an affect on my mental health but I talk about that all the time, its nothing new.

The last time I remember feeling physically normal was last spring, in 2019. By the summer, I was starting to have issues with fatigue. It started as a heavy feeling in my legs and progressed to full body fatigue by winter. I thought I was just depressed... nothing new, right?

Around the time I married my spouse at the end of February, I had developed a heavy cough with difficulty breathing and wheezing upon exertion. This was also around the initial outbreak of Covid in the states. Uh oh, that's not good. Maybe I caught covid?

Nope.

I scheduled a telemedicine appointment after the negative covid results and the doc thought it was a flare from my childhood asthma that had progressed to acute bronchitis. That makes sense. Prescribed a course of oral corticosteroids and a rescue inhaler for future flares.

A month later I was in my gp's office with exacerbated symptoms again, they came roaring back after the steroids had left my system. Prescribed a daily double dose steroid inhaler and another course of corticosteroids.

Three week follow-up and I was doing ok, able to mild exert without becoming symptomatic but I was pretty sure marathons weren't in my future anyway.

If I can't breathe I can't run, but that's ok at this point.

By now it was July and we were in full swing with our summer plans. A family wedding, camping, and preparing to start the remodeling of the other half of the bathroom.

I felt lethargic pretty much all the time but was mostly able to push through. Come the middle of July, the Family wedding, I got physically ill in the bridal suite. I thought I had indulged in too much wine, but I continued to vomit into the night. A few days after the wedding, I got ill again. This has continued now, about once or twice a week for two months now.

August brought another camping trip, a short one at a state park nearby. I had another massive asthmatic flare during that trip and haven't ever fully recovered.

Now during the last two months, as I've just progressed worse and worse, I have noticed a myriad of other symptoms pop up. Gastrointestinal distress,- almost to the point of being hospitalized for dehydration, repetitive stabbing pain in certain parts of my body, worsening wheezing while laying on one side but not the other, unintentional weight loss to the tune of ~30lbs since May, frequent low-grade fevers, the list goes on.

I know what you're thinking at this point... "Amanda, why don't you go to the doctor??" Been there, done that. I've had abdominal, pelvic, and transvaginal ultrasounds and just days ago, a CT scan. The only findings that are worth noting are a complex thick-walled cyst with thick septations on my left ovary and an unknown cystic structure on my inferior bladder and some unknown deposits in my liver. My bloodwork, however, has come back questionable so I have an appointment with a GI doc this week and and oncologist next week. Cancer is in the ring, folks, but so are a lot of things like crohn's or lupus.

What I do know, since we are still in the beginning stages of finding out what's wrong, is that I am going to have to fight and be my own advocate because the push back I've received from these doctors about exploring other, less common diagnoses is ridiculous. No one listens to me when I tell them these are not normal symptoms for me, that all this is new and progressing. I've have to fight for referrals and certain tests, like bloodwork. God forbid I have an aggressive cancer like ovarian cancer, and because someone made me wait for a second ultrasound in three months, I've gone from stage I to stage IV (I don't know if it's ovarian cancer but it's a possibility). I don't understand wanting to drag your feet with such severe constitutional symptoms.

Sorry, I know it's long and I didn't put it under a read more. If you made it this far, thanks for listening. Sometimes it helps to just get it out of your head.