Please help me find someone else with my rare conditon

My name is Valerie, I’m a teenager, and I’m chronically ill. 

I’ve been sick for a decade now, and unfortunately, I tend to get all the rare and ~special~ disorders. Because of this, I currently have doctors in nine cities spanning across five states. I battle six chronic conditions, and balancing them is a daily struggle, but I’ve managed. 

But my newest condition has turned my life upside down. It’s called Recurrent Subacute Thyroiditis (RSAT) and most doctors will never see a case of this in their lifetime. I luckily have found a doctor who has least seen a few cases of this before, but I am the youngest person she has ever seen with this condition. 

RSAT is an inflammation of the thyroid that causes overactivity, leading to high heart rates, trouble breathing, low blood pressure, dizziness, chest pains, insomnia, fatigue, hair loss, and muscle weakness. The overactivity lasts for about 2-3 months, and then the thyroid flips to inactivity, leading to lethargy, extreme fatigue, depression, low body temperature, and slow heart rates. The inactivity lasts for 2-3 months, making this a 4-6 month condition. I’m currently in the middle of my second episode, and my first episode was just two years ago.

I am terrified. This condition has caused me to be rushed to the ER twice. This condition has rendered me so dizzy and dropped my blood pressure so low that walking is a hazard and I am in a wheelchair. This condition has prevented me from attending school since the end of October. This condition can occur again, and there is no telling when or how often. 

I’ve scoured the web, posted in countless Facebook groups, analyzed research, and even scheduled a conference call with doctors in another country to try to get some answers. Not only is there no information on it, but I can’t find anyone else with it (and due to HIPPA laws, my doctor is not allowed to connect me with the other cases she has seen). I have support from my friends and family, but they cannot even begin to understand what this is like. 

I am alone in this right now, but I know the internet is a powerful place. I’ve seen other kids with rare conditions find support and/or answers, and I thought I might as well give it a shot. Please, please - even if you don’t have this condition, even if you don’t know me, please reblog this and spread this around. I just need to know that I’m not alone in this. Even finding one person who has this would make the world of a difference.

Thank you in advance. Those who know me best know I absolutely hate asking for help, but I can’t do this alone anymore. 

anonymous asked:

So I have hypothyroidism and bc we were talking about hormones and stuff in chemistry the teacher asked if anyone had a thyroid condition, I was like yep. No problem there. But after class this guy came up to me and told me if I just ate healthy and started exercising every day I could cure my chronic disease, especially he said, if I went vegan. And that I had no right to complain if I didn't do anything to fix it. Yummy.

I’m so SMAD about my doctor’s office right now. I called them, got their shitty automated response crap and none of the ‘push this number for–’ directions is even close to what I need. So I sit there annoyed, frustrated and upset because I don’t know which one would help, like at all.

I just want to know the status of my bloodwork. That’s all. 

I tried the appointment setup number and she sent me back to the EXACT SAME AUTOMATED VOICEMAIL I was struggling with in the first place. 

I just want to know if I’ve got a thyroid condition, Mono, or some kind of deficiency or something. It’s only something that impacts my life every day. Not a big deal or anything.

I fucking hate this shit.

          ( sorry for the second ooc post but

          i’m changing the format of how i answer inbox things; i’ll be putting them in new posts ( screen capping the ask and then making a post so i can put them in my tracker right away ) instead of answering the ask directly. ( i won’t be doing this with ooc things though, since i don’t need to track those. ) obviously, i’ll be tagging the sender. please like the post to let me know that you’ve seen it! since tumblr is a shitbag and likes to not let people know when they’ve been tagged. 

          i’m going to try to do stuff today, but … we’ll see. i literally have spent the last four days in bed, sleeping on and off, and i’m 99.99% sure i have a thyroid condition that’s just making me absolutely brain dead and permanently exhausted. it makes sense ( insomnia/hypersomnia, weight gain, inability to lose weight ), and my last blood test ( …which was 6 years ago, oops ) indicated that my TSH was slightly below the reference range. 


          brand spankin’ new way of answering asks, yay! i’m always tired and it’s ruining my life, boo! gonna try to do stuff and things, woop woop! )

#growingupfat having to shop in ‘grown up’ stores when you’re 10 because you no longer fit into child sizes

#growingupfat having to write down everything you eat so that your mom can see why you’re so fat

#growingupfat not fitting into your size 2 mothers clothes

#growingupfat having self esteem issues that you aren’t allowed to talk about because the only thing that anyone will say is that it’s because you’re fat

#growingupfat being afraid to try sports

#growingupfat “you might have a thyroid condition”

#growingupfat thinking you’re not allowed to be okay with who you are

#growingupfat being terrified of dressing rooms

#growingupfat wearing the same 3 outfits because they’re the only thing that fits you right

I love pissing off people in the FA community. It’s like they know deep down that everything they say is completely unsupported by any reliable evidence, scientific or otherwise, and they know all they’re really doing is harming themselves while making excuses- so naturally they get butt hurt over the smallest comments that criticize their movement.

I don’t hate fat people. I hate the glorification of an epidemic that not only costs the health and lives of innocents everywhere but also costs the American taxpayers millions of dollars every year. An epidemic that spits in the face of starving, impoverished children with the idea that any sort of extreme excess could lead to more oppression than not being able to fucking eat.

Your doctor weighing you and telling you to lose weight for your own well being is not oppression. Not being fucked by attractive and fit men is not oppression. Not being able to find size XXXXXXXL is not oppression, because no one should be that size.

Stop making fatness a part of your identity. It isn’t race, it isn’t sexual orientation or gender identity- it is a health condition that is completely changeable. I literally saw a FA advocate on TV say the words, “It’s not like you can just change your lifestyle and then maintain that”. Guess what? People do it all the time. New parents do it. Recovering drug users and alcoholics do it. It’s completely possible. Stop using bullshit excuses like, “mah genetics” or “mah thyroid” to justify killing yourself with food. Thyroid conditions can account for at most thirty extra pounds, and genetics is something that while you can’t change, you can certainly influence the expression of. You aren’t attractive, and there’s a reason the world views you in that light. It’s because obesity isn’t healthy, and the VAST majority of people don’t want a partner that is likely infertile for no reason other than they can’t stop stuffing their faces. 

Please stop insisting that I must be this angry, hateful person just because I disagree with the fat acceptance movement (along with the majority of Americans). I don’t comment on the personal pictures of people who accept this movement, no matter how disgusting they are. I stick to making logical comments on the irrationality of this entire movement.

You can keep sending me hate, I don’t actually give a fuck since I know I can see my feet when I look down and love what I find in the mirror every morning- I know you all aren’t so lucky even though you try to convince yourself your physical appearance doesn’t need to be changed. 

A really big and important part of self-love is loving yourself enough to change when your lifestyle is costing you your health. Just blindly loving everything about yourself just so you don’t have to confront the fact that you have a problem is not self-love. It’s self-abuse with excuses.

We don’t tell heroin addicts that nothing is wrong with them and they should continue using, so why should we tell people addicted to food that what they’re doing is okay, or that’s impossible to change? Guess what? It’s not, and everyday you spend on this FA tag is another day that you’re fat as fuck, unattractive, and worst of all- unhealthy. 

I changed my lifestyle in a very dramatic way to stay off heroin. And if I can stay off the most addictive substance known to man, then you can stop stuffing your fucking face. 

What You Say vs. What We Hear

Apparently there’s been some confusion over what you should and shouldn’t say to your plus-size friends.Well, I’m here to try to help you out. Now, I’m not saying I speak for all plus-size girls out there. Heck, some of us don’t even like to be called plus-size. But I do feel like I speak for at least a fraction of us so I’m gonna go ahead and say this: Sometimes people say stuff to us that freaking sucks.

There. I said it. It doesn’t matter if the person is not trying to be mean or condescending, it can still come off that way. And no, I’m not being “oversensitive” today. I’m just saying, it’s nice to be treated somewhat like a human being every now and then.

What you say: “Wow, you’re soooo confident with your body.”
What we hear: “Wow, it’s amazing how you choose to live life somewhat happily even though you’re fat.”

What you say: “Aren’t you worried about your health?”
What we hear: “Apparently, I’ve magically apparated into your doctor’s office, looked through your files, and deemed that your doctor was incorrect in proclaiming you to be a perfectly healthy human being.”

What you say: “Do you need workout tips?”
What we hear: “I’m assuming you don’t workout and I don’t realize that pointing out your size is probably not the best incentive to get your self-confidence in a good enough place that you’ll even want to work out.”

What you say: “Do you have a thyroid condition?”
What we hear: “So what’s your excuse?”

What you say: “Are you just lazy?”
What we hear: “Fat = Doing nothing but eating all day. This is an equation I’ve known for years yet your body is giving me a different result.”

What you say: “Don’t worry, some guys/girls are into that.”
What we hear: “I don’t want you think you’ll end up alone, some people will lower their standards.”

What you say: “Ugh, I feel sooooo fat today.”
What we hear: “I’m feeling self-conscious about myself and choosing to discuss this with my friend who is at least eight sizes larger than me without thinking about how it’ll make her feel.”

What you say: “I just want you to be happy.”
What we hear: “Because there’s no way anyone would be happy at your size, right?”

Witchy 101: Herbal Safety & Hormones

I’m going to rant about this again, but in a new, more specific form!

Don’t fuck with your hormones unless you know what you’re doing.

Listen, we fuck with our immune system on a daily basis, and if you wanna boost that, that’s great, unless you have an autoimmune disorder, and then don’t, but that’s usually a thing you know about yourself. Hormones are delicate. That’s why doctors who deal with them tend to be careful. Everything from your weight and height to organ function can impact how they impact you. Some people make way more testosterone, some people make way more estrogen, and some people make like none of either. Some people have a teency bit of estrogen and their system goes ka-blewie, others can pound estrogen until the cows come home and nothing happens. 

You don’t necessarily how you’re going to react, and that can be a bad thing.

Allergies are one thing, but hormones? A bad hormone reaction can include organ damage and emotional freak outs that mimic mental illness. We don’t need to be doing that to ourselves! We don’t need to do that to others!

Some really common herbs, like red raspberry, have some mild estrogenic effect. Its mild, in much the same way that soy has a mild estrogenic effect, which makes it a decent place to dip a toe and see if you react poorly. Because you may react poorly. Don’t just dive right in and start fucking with heavier dosages, because you can and probably will hurt yourself. 

This is especially true if you’re on HRT, if you’re pregnant, if you have any kind of organic hormone issue like polycystic ovary disease, endometriosis, or a thyroid condition, or if you’re pregnant. DO NOT just assume you’re not if you have that capability. DO NOT assume you’re not just because you’re on the pill, and especially don’t start fucking with hormones if you’re on the pill. Your doctor, a trained medical professional, gave you that dose for a reason. And remember kids:

Don’t just take herbs because a stranger told you to on the internet. They are medicine. Check with your doctor, and actually read up on what you’re trying to ingest.

Your safety comes first!

Headcanon: All the cats have homes they go back to… except for Tubbs, who is a stray. He’s fat because of a thyroid condition in addition to being just a big cat, and he eats all your food because he doesn’t know when he’ll get another meal. (He’s very grateful to you and loves you very much.)

Health problems of each sign


  • Body part: Mars rules the head.
  • Conditions: headaches, tooth issues, jaw grinding, and even facial blemishes. 


  • Body part: Venus rules the lower jaw, the throat, and insulin production.
  • Conditions: throat infections, thyroid conditions, stiff necks, tonsillitis, and ear infections 


  • Body part: Mercury rules the dual body parts (arms, legs, and so on) and the respiratory system.
  • Conditions: chronic coughs and colds, bronchitis, sore shoulders, and tendonitis


  • Body part: Moon rules the stomach and digestive system.
  • Conditions: indigestion, intestinal maladies, and acid-reflux disease


  • Body part: Sun rules over hearts, circulation, and spine.
  • Conditions: back problems, heart ailments, and lethargy


  • Body part: Mercury-ruled as well, but the health focus is on the digestive tract and intestines.
  • Conditions: work stress, ulcers, constipation, and food allergies could result


  • Body part: Venus-ruled as well, but health focus is on kidney and bladder functions.
  • Conditions: Excretory problems


  • Body part: Pluto rules the reproductive system, kidneys and bladder.
  • Conditions: painful and/or irregular menstruation, bladder infections, and diabetes


  • Body part: Jupiter rules the thighs, hips, liver, and sciatic nerve.
  • Conditions:  spinal disorders, rheumatism to detoxification issues. 


  • Body part: Saturn rules the skeleton, teeth, and joints (specifically the knees).
  • Conditions:  arthritis, knee issues, and osteoporosis


  • Body part: Uranus rules circulation and nerve impulses.
  • Conditions: arthritis, heart problems, swollen limbs, varicose veins, asthma, and increased allergic reactions


  • Body part: Neptune rules the lymphatic system and feet
  • Conditions: foot problems (corns, bunions, etc.) and a weakened immune system

On 6/5/15, my rat terrier, Benny, dug a hole under the fence and got out. In the OceanFront area of virginia beach, VA. My family and I are worried sick about him, and miss him very much.
He’s about 12 years old, although he looks a lot younger.
Has on a brown leather collar with all his tags.
He’s special needs, has and thyroid condition, and is on a special diet. He is extremely dependent on his brother, and if they aren’t re-united soon, Benny will become disoriented and scared. Last night was the first night the two have ever spent apart, and I’m sure it was hard for both of them.
He’s a complete sweetheart, and only wants belly rubs and loves.
If you’ve found him, seen him, or know if he’s been taken into a shelter, please email or text me!
We miss him very much, and hope someone will find him and do what it takes to return him to us.
He is our little guy, and it’s already very hard to not have him around. I know tumblr is a long shot for this, but coverage is coverage.

A note on spaying

My dogs’ breeders follow my blog but don’t have a Tumblr, and wanted to weigh in on the issue of when to spay that was brought up a little while ago, so they shot me an email and asked me to post it. Here are their thoughts:

“As canine breeders for over 4 decades, we recommend that a female canine be spayed after the first heat, and preferably the second heat, and not before.

Most humans are aware that hormones help regulate natural processes of the body.
I am a registered nurse as well, and so is my wife. We have advocated for humans for decades, and also for canines.

A total hysterectomy (spay) causes a complete loss of necessary hormones for the remainder of a female’s life, whether it be human or canine.

Humans have the wonderful advantage of supplementing the necessary hormones via medications.
Canines do not.

Presently, veterinary medicine does not address hormone supplements for spayed female canines. This is most unfortunate, as humans have this ability, but veterinary research, veterinary colleges, the USDA, FDA, and NIH turn a blind eye to canines, and virtually all other animals.
Unless the hormone balance can be maintained, whether it be human or canine, negative outcomes may prevail

If a female canine has not had the chance to reach maturity at the first heat (or preferably the second heat), and have her body enriched by adult female hormones (this may not happen until the second heat), she will lack the effect of those hormones on her body for the rest of her life.
What does this mean?

Estrogen and Progestin affect all physical and mental systems in the female body, be it human or canine.

In canines, a lack of either may cause negative and devastating effects such as bone diseases, cardiovascular diseases, mental diseases and conditions, skin and hair conditions, neuromuscular diseases, thyroid conditions via brain hormones to the thyroid, obesity, and many other conditions.
These problems may also lead to premature death.

Your veterinarian will only advise on his or her knowledge supplied by veterinary research, the USDA, FDA, or NIH due to legal dictum. They may be well aware of human alternatives, but this is not available for canines, so they will only give you the “official” opinion from their viewpoint with regard to canines.

They cannot do otherwise, even if they know otherwise.”

The Jenny Jones Talk Show Murder

March 1995:

The Jenny Jones Talk Show was, as the name probably suggests, a talk show hosted by Jenny Jones that began airing in 1991. Another likely obvious statement is that the Jenny Jones show was not hard-hitting news, but rather a televised spectacle often featuring subjects such as rebellious teenagers, DNA testing, and other sensational topics.

In March 1995, Jonathan Schmitz (24) of Michigan flew to Chicago to appear on a never aired episode of the show. He had been told by producers that he was being featured on a segment about secret admirers. The heterosexual Schmitz was led to believe that his admirer was female. He apparently spent money on new clothing to look his best for the appearance.

Instead, when Schmitz walked on stage, it was to laughter and teasing of the show’s live audience as he discovered this his admirer was Scott Amedure (32), a friend of his upstairs neighbor.  Visibly embarrassed and uncomfortable, Schmitz listened as Amedure detailed his crush on him. This included a pre-taped sexual fantasy about the two of them. When Jones, the show’s host, asked Schmitz for his reaction, he stated that he was heterosexual.

Humiliated from his awkward appearance, Schmitz returned home to Michigan. Three days later, 911 received a call from him admitting to the murder of Amedure. He had purchased a shotgun and gone to Amedure’s home, where he murdered him at close range. A direct quote from Schmitz to the 911 operator was “he fucked me on national TV”.

Schmitz’s defense was based largely on the appearance on Jenny Jones, as well as manic-depression, alcoholism, and a thyroid condition. He was sentenced to a minimum of 25 years in prison. His conviction was appealed, but he was found guilty again and received the same sentence.

Amedure’s family brought a wrongful death suit against the show and was awarded 25 million dollars.

In 2004, scientists discovered some ancient human-like bones on the Indonesian island of Flores. Analysis revealed that the adults were only three feet tall and their “proximal pedal phalanges are relatively long and robust.” In other words, they had huge feet. Much to the displeasure of the people who own the film rights to The Hobbit, they were quickly nicknamed “hobbits.”

Controversy raged about whether these were a new species of homonid or just really small humans, perhaps effected by a thyroid condition. In the past decade, the evidence seemed to be stacking up that hobbits are a distinct species.

Today, on the birthday of Frodo and Bilbo, why not read up on our real-life diminutive cousins and listen to interviews with the scientists who study them:

Image: A reconstruction of a H. floresiensis head on display at the Smithsonian’s National Museum of Natural History, photo by Ryan Somma.

All my Hypopara peeps!

I’ve decided to keep all my hypopara info and posts on a different blog. It’s so I can move the questions and concerns to one spot, and also be able to spam the dash of only those who really want or need the info. Also, this is also for anyone with a thyroid disease/disorder, as I’ll be posting about all that too!
So please go onto