Falling Asleep On The Job

No one plans to fall asleep on the job. But lets face it... It happens.

And as you all know, I'm an at home mom. So I'm ALWAYS on the job.. And falling asleep during the day is never a good thing here. Unless my kids are gone and I'm alone. Which is basically never. 

However.. I can't lie and say it never happens. Not that I plan to take a nap or anything. I don't. I know my children are insane and shouldn't' go unsupervised. They find the strangest things to get into when I'm not looking. Or they fight with each other and then hit each other and then complain about it. Ridiculous. 

Sometimes though, I can't help it. Not like "I am so tired that I just let myself fall asleep for a few minutes" can't help it. But like full on, for real, can NOT help it! I will just fall asleep for who knows how long and I'm totally unaware of it even happening until I wake up on the couch, with or without drool on my face. (Yes, I'm a drooler.. I hate it but I can't do anything about that so whatever.)

Sometimes, it's only for a few minutes. Sometimes though, it may be an hour. 

It is partially due to my "possible" narcolepsy (I say possible because I didn't finish the testing, but my sleep study doc was pretty sure I have it, and honestly, so am I). But it also a result of my blood pressure bottoming out.

The latter of the two really worried me also. It happens randomly, no warning or anything. Just all the sudden, it plummets. And no one knows why. Spoooooookkkkkyyyyy. 

It's really frustrating though, and I wish I knew the answer. I feel like shit when it happens, get dizzy and nauseous, and everything in my body feels REALLLYYYY heavy. Like even thinking of moving is impossible. 

Then, I may or may not pass out. No one likes passing out, of course... But honestly, when I do, I wake up after my blood pressure has normalized so I don't have to feel like shit anymore. 

So it's kind of double edged sword. Stay awake and feel like ass, or pass out and wake feeling better. 

I am suppose to be wearing a heart monitor right now (for 30 f***ing days!!) but had to take it off early because I'm allergic to it. (Which is a whole other story. My skin is peeling off now. It's bad. But you can read more about that here How Do You Not Understand. )

So since I had to take it off, who knows what it found or didn't. I don't even know if whatever is going on with my blood pressure is even related to my heart rate or not. But seriously, something needs to get figured out.

How am I suppose to function when I can't function?! It's not even JUST the blood pressure (even though, that is one of my most debilitating symptoms) but I also can't stand or walk for long (roughly 5 minutes) periods of time because then I can't breath anymore. I have to sit back down or squat. And anytime I squat and stand back up, I get lightheaded. 

My life is so fun! Hopefully I can get some answers soon. But as of now... It's not looking likely. 

Anyone suffer from random blood pressure changes, narcolepsy, or passing out on a regular basis? Are you working or unable? How do you cope with it? Comment below! 

This Is SOOOOO Important!!

Alright. Being a women is awesome and all but there are things that just suck about it too. Like having a period. It's no fun. Or getting Pap smears.

But! Pap smears are soooooo important!!!!!

I've heard recently that doctors are now saying if you have a clear pap when you're in your teens or twenties, it's okay to wait a few years in between getting them done. No longer do we all need to go annually.

Sounds awesome, right?! I mean, let's face it... Pap's are uncomfortable and embarrassing. No one wants someone they hardly know all up in their shit. I get it! Trust me! I hate them.

And I don't know who they think they are kidding by adding a stupid picture of a puppy or whatever on the ceiling. It is NOT calming. It's weird. And it doesn't make the situation any less awful.

However, they are sooooo important!!!! Get them EVERY SINGLE YEAR!!!! Do not wait 3 years because you had a good pap previously. Get them every year!! That is why they are called the annual well woman's exam. It takes a few minutes of being uncomfortable but could save your life!

I go every year. And I have gone every year since my very first one (back in my teens when I started having sex). Every one needs to go as soon as they become sexually active.

I have always had clear paps. ALWAYS!!! Every. Single. Year.

Until this year.

Do you know how scary it is to be told your pap came back with abnormal cells? I hope none of you do. But it's scary.

I had to go and have a colposcopy (a biopsy) and my biopsy sent off for further evaluation.

I went back to my doctor after my results came back and I have precancerous cells. They did cryosurgery to freeze the cells of my cervix off. I have to go back in a few weeks to make sure all the abnormal cells are gone. If not, I will need further treatment.

It's very scary. I am very scared. It's weird knowing I may or may not still have cells that are just waiting to turn into cancer in my body.

The one thing I immediately thought about when I was told I have precancerous cells is just how glad I am I go every year.

Precancerous cells are just that. Pre cancer. It's not cancer yet. But if left there, it WILL become cancer.

Even though I have had clear paps my whole life until now, I always went anyway. Could you imagine how bad this could have been if I skipped years because they WERE clear in the past?

I don't even want to think about it.

Stay on top of your health. Keep getting checked even when there doesn't seem to be a problem.

Pap smears are just that. They are for cancer SCREENING! Do not wait until you have symptoms. Do not wait because your last pap was clear. Do not play games with your health. I am only in my mid twenties. Cancer is not dependent on age.

GO EVERY YEAR!!!

I am so glad I do not have cancer. But I wouldn't have even known I was at risk if I didn't go regularly.

I hope you all take precaution with your health and get checked every year. If not, I hope my story will inspire you to start.

5 minutes of discomfort is worth knowing you're safe.

Do you all go every year? If not, will you start? Let me know in a comment below.  

They STILL Don't Get IT!

I don't usually talk about my health conditions to my family. I talk to my friends and I write this blog about it instead.

Why don't I talk about it? Because they still don't get it!!!! And it's soooooooooo FRUSTRATING!!!

I made the mistake of talking about my bladder prolapse with my (future) mother in law. Now, I've mentioned to her before all the things wrong with my body numerous times throughout the years. Ya know what she said when I told her about my bladder....

"Well that is strange. Usually only older women that have had large babies born vaginally get bladder prolapses. You didn't have any of that and you're so young. I don't understand how that happened to you."

SERIOUSLY!!!!???? I've only told you how many times about my EDS???!!

I have a f***ing connective tissue disorder!!!!!!! How can I make that more clear???!!!!

Please! If anyone has the answer, let me know!

I don't understand how people just don't get it! I explain what it is, what it means, and how it affects EVERYTHING in my body; and they still are shocked when I tell them something that makes sense because of my illness.

Even my fiance doesn't really listen. Nor does he really care to. (Although, I think that is more because he doesn't like to feel helpless and knowing there is so much wrong means he can't do anything. It's hard for him too....)

I told him about my pills for my gastroparesis and exocrine pancreatic insufficiency (which I've been taking for months) and he was like "ya ya, okay." He just doesn't want to hear it.

Usually it doesn't frustrate me because I know this about my family, but right now, I'm actually pretty pissed about it!

People just don't listen! I know I'm young! I know!!!!!!!!! But I have a chronic illness that affects everything in my body and will continue to break my body down until I eventually die... Why is that hard to believe? It's like they think I'm making it up or something... How can I be making it up?!

I have a neurologist, neurosurgeon, psychiatrist, cardiologist, gastroenterologist, endocrinologist, OBGYN, urologist, rheumotologist, dermatologist, physical therapy, and my pcp of course. 12 f***ing dooctors and they think I'm making it up?! Wouldn't I be locked away in an mental hospital for wasting all these peoples time if nothing was wrong with me?! Wouldn't they treat my craziness if I was just a crazy person? Why do people not understand I AM SICK!????

It makes no sense!!!!

Anyone else out there with people in your life that just don't get it?! What do you do cope? Do you just ignore them or speak out? Share your experience below.

I Can't Think Of A Good Title...

I am really depressed today. I don't know why. Nothing has changed. Nothing happened to make me depressed. I just am. And I hate it...

I go through these dips every so often for no reason it seems.... It really makes everything so much challenging. I already lack motivation because, you know... I'm chronically ill and that just comes with the territory.. But this is different..

I don't want to do anything but sleep all day and drown out the world. And I can't because I'm a mom and I have two little people depending on me. And that just makes me feel worse.

Like I failed them by being so horrible or something. I know this will pass and I will be back to my normal optimistic self (even as my body literally falls apart) soon.. But waiting for it to come and act like everything is fine is just totally draining and makes me even more depressed.

People always say when you're depressed to just get up and get out if you can. Do something that you usually enjoy. It's hard because you don't want to, but it will help bring you out of the depression.

Because depression is a cycle. An evil vicious cycle. You get depressed and isolate yourself and then the isolation and lack of motivation makes you even more depressed. And the cycle continues...

Knowing this will pass is not comforting right now though. I want it gone now! I want to feel okay and I just don't. Everything seems so bleak right now...

I just recently found out that I will have to change my major in school because it isn't offered and I can't travel to another college that does offer it... I was all proactive before... I mean, I realized this more than a week ago.. But today, it's all I can think about. I don't want to change my major. That is why I CHOSE it!!! Ugh..

I also just found out last week after meeting with my urologist that my bladder is only slightly prolapsed and will not require surgery. Good news!!!! But even that has come with complications.. He thinks my symptoms are mostly neurological.. How do I fix that??!! He said that my muscle strength is still good, and that my saving grace with my prolapse (for now) is hat I never delivered my children naturally (both were c-sections). He also said that will my EDS, it will only get worse in time and IF I ever DID have the surgery, there are A LOT of risks... Which completely freaked me out.

I usually am so good at taking the good and bad and just figuring out what can be done and how I'm going to do it. Things very rarely get to me... So why now?! Why am I depressed today?!

Seriously, when it comes out of the blue like this, it's just an even bigger downer...

Anyone else experience random depression? What do you do to combat it? 

I Thought It Was A Good Thing?!

Holy shit. I didn't realize how long it's been since my last post!

It is crazy how fast time flies! It felt like only a week. Not over a month!!

Anyway. I have fun news!

After the passing of our last dog, we were planning on getting another. We wanted a weimaraner and we going to get one through a breeder. Well, then my husband saw the cutest doggy in Facebook. He was in a shelter and losing weight from stress. It was bad. So of course our plan changed and we saved him. He is so sweet! About 2 years old, Pitt/Lab mix. Such a cutie pie!

Soooo! Now that we have this new dog. And he isn't all super old and has energy (unlike our last one), I walk him twice a day now. Once in the morning before I get my kids up and ready for school, and once at night after I put them to bed.

Its great because he is so active it makes me HAVE to STAY active!

I mean it's easy to do something one day as then do nothing for 3 days. Or more like 3 months. Whatever. Don't judge. I KNOW I'm soooo out of shape!!

So this walking has been great and all because, well duh, I'm up and moving. Which is good all around.

But now that its been 2 weeks. Its not. I'm actually in more pain now than I was before. My back, hips, and knees are angry with me and they are not afraid to let me know!

What a catch 22. Work out and it will help stabilize. But working out (yes, walking is a type of exercise! I checked!) makes my pain so much worse.

I'm staying with it. For Bentley (our new fur child). But I must say, I hope I hit a comfortable place soon or I may get a wheelchair and just have him pull me.

Anyone else ever start to workout or change your routine to try and better yourself to just have it laugh at you? Did it pass? Did you stay strong or give up? Comment below! 

I Am Gumby's Secret Love Child

That's right. Gumby has a secret love child and it's me! I'm exposing Gumby and his dirty sexual escapades! 

Really though, I may as well have been. With Ehlers Danlos comes my extreme flexibility. To the point I don't even know what's considered normal. AND when I wear braces to keep from hyper--extending my joints, I really don't understand how people live with such low range of motion. 

I mean. I guess it's normal range of motion but mine is normally soooooooooooo much more, it feels restrictive to me. Like, how do normal people carry more than two things at once?! There fingers don't stretch out sideways! It just blows my mind how they are able to get anything done, ever.

I was looking up normal range of motion and found some interesting things. Did you know normal people can't bend their wrists more than 60 degrees in either direction!???!!! That is crazy to me!! I must be honest. I just don't get it! I've never been "normal", especially in that area. 

Look at this shit! 

Normal range of motion.

And then me.....

And that's just one joint! 

I may be all Gumby and pliable. But I really don't know how else to do things. It's almost a blessing and curse. A double edged sword if you will. 

That is my left arm by the way. 

It's not just being super bendy though. Obviously. There are soooooooo many aspects to EDS it's fricken bananas. Mmmm. Bananas.

My EDS has affected my heart, skin, joints, tendons, eyes, muscles, teeth, mouth, GI track, pancreas, brain, bladder, and more. It is seriously a systemic disorder. 

And it sucks. But sometimes, it is really cool. Like when I'm all alone and my back itches. I can reach the whole with ease. Picture it now... "Oh. My arm doesn't want to bend that way? I'll just dislocate it. Ah, there we go." 

Now, not everyone with EDS will be affected the same way. For some, the dislocations are incredibly painful. Some cannot dislocate on command. I can. And usually, they are not too painful. But, they still can be. Especially if they are random or accidental.

I still can't get over the normal range of motion. How do those freaks even get around!??! 

And other bendies out there that just don't understand the normal range of motion??!! I mean, really, HOW do normies live!? 

P.S. It has been brought to my attention that my background on the left of my page looks like an erect penis. Has anyone thought or noticed this?! And why was it not brought to my attention. 

Enjoy. You cannot unsee what you are about to see. 0_o

Let's Add Another To The List!

So I met with my gastro the other day.. We talked about my EPI (exocrine pancreatic insufficiency) and my other symptoms..

First off I must explain, I stopped taking the enzymes for a while because I was getting SUPER bloated! And gasp!! Constipated!

And I mean it was so bad to the point to where I couldn't even breathe or lean forward or sit comfortably... Or really anything...

It was just super uncomfortable and I just didn't want to do it anymore.

But! The enzymes were working in the beginning. So I wasn't really sure what was going on. So I talked to my doctor and he said that now that they fixed the enzyme problem and I'm actually absorbing nutrients now that part of my digestion its fine. But, if I'm experiencing more symptoms, then there is ALSO something else afoot. Blast!

So...... We talked and he diagnosed yet another disease... Gastroparesis.

Ugh. Adding another to my list.. Which is already long enough that I forget some of the things on there.. I should really write it all down in my phone or something.

In the beginning, I remember getting so upset about new symptoms or diagnoses.... But now. I think I don't even care anymore. I mean, my whole body is slowly breaking down... So what is another thing, really?

Now I have a new pill to take.. I set my phone alarm to remind me when I need to take it (because I'm super forgetful.) throughout the day.

It's been a few days now and I honestly have seen a huge improvement!!!

I didn't even remember what it was like to NOT be bloated.. And now, I can breathe when I eat and lean forward (which I have to do because my back is too weak to support to my body for long periods of time.. like the 20 minutes it takes me to eat..)

I'm actually a bit relieved to have this diagnosis. While it's just another on my already long list, it's something that can be improved and I'm grateful for that.

It's been tricky planning out when I take my enzymes and the meds for gastroparesis, but the alarm does help. I even wrote in as a "title" which one I take and what I need to do when it goes off. Especially since I now need to change the times I eat and have to eat around different meds and what not.

It will definitely take me time to get used to, but I'm getting there. And honestly, the improvement I've already seen is enough drive to keep me going!!

Anyone else get something new added to their list lately? How are you handling it? Are you upset or just indifferent about it? Let me know in a comment below! :)

Will You Stop That DAMN Tapping!!

First off!! Exciting News!!

Soooooo!!!!!! I have been asked to be a guest blogger for another website! How freakin exciting???!!!!! I mean.. I've only had this blog like a month and a half!

It will take about a week before I am up on the site.. But I am excited about the opportunity. I feel honored. When I am introduced and my blog is up on on the other site, I will post it so you all can go and read more of my rantings.. I know you're all super excited. It's okay. Let it shine!

Anyway.. On a less exciting note.. My oldest daughter got a stomach bug... She was up all night throwing up.. And because she is only 5, that meant I was up all night.

I know for some people, sleep almost never comes. I had insomnia when I was younger.. So I can sympathize with you all.. But I don't have it anymore..

Actually... My sleep study doc thinks I may have narcolepsy. Lol. Who has narcolepsy?! I laughed when he told me.. But then I looked it up and it actually doesn't seem so far fetched an idea.

So obviously.. I need to sleep. A LOT! I am ALWAYS tired!!! Always!

And I'm usually in bed and alseep by like 10-10:30. So not being able to sleep last night till like 3 in the morning... And then waking up at 6 something with my youngest.. I'm seriously sleep deprived and exhausted..

Which of course, my Chiari is angry with me about.. Chiari likes sleep... She's a bitch that way. She is getting back at me with a crazy intense headache, horrible neck pain, more intense tremors, weakness (especially in my legs) and more dizziness.

It's been a fun morning.. I have a mountain of laundry to do because my daughter didn't know she was gonna hurl all over the fucking room.. Or her bed.. Or herself.. I still haven't gotten the smell out of my nose... :( It's horrible. She is still very tired but hasn't thrown up today so I think the worst is over..

I would still take all her pain away if I could though. That's what moms are for, right?

Well.. I should probably be going.. I'm not even sure if this post makes any sense at all... And I' starting to hear things... I hate hallucinating! It's creepy.. Too bad they couldn't be cool hallucinations like smelling fresh baked cookies.. I get weird creepy auditory ones that sound like tapping, bagging, knocking, and scratching sounds. Super annoying to say the least!

I keep looking around the house thinking I'll find some serial killer ghost or something.. Ah the things a sleep deprived mind comes up with.. Maybe it has something to do with the fact that I was watching "See No Evil" and "Saw II" last night to help keep me awake...

I hope you are all having a good and stable day! :)

(At least my yesterdays make up still looks pretty decent. Ah, the silver lining....)

I Think I'm Dying....

That's how I feel anyway. After last night (Halloween) and walking through the ENTIRE neighborhood, I'm exhausted!

The kids had a ton of fun!! It was worth all my pain!

I really should have brought my cane though. I meant to, but forgot it in the rush to get out the door.

My kids were soooooooo excited and I was getting frustrated because they weren't listening very well. So I was just trying to get out the house and get everyone in the car so we could go to my mother-in-law's neighborhood! It was a lot of fun though. A couple of their friends went with us. It was a lot of fun!

They were so darn cute! But I am definitely paying for all the fun today..

Isn't it a bitch!? You go out to do something you rarely do, knowing you'll pay for it, but do it anyway. Some things are just worth the "been run over by 5 trucks" feeling.

Sometimes though, it wasn't worth it... And then you're just mad that you did because it wasn't worth feeling death for days after..

It's sometimes really hard to judge out if it will be worth it or not.. But usually, I'm pretty good at knowing. Learning your own limits can be challenging though. Especially in the beginning... But it gets easier.

It's weird for me and often confuses other people because some things are still easier for me to do than others. Like standing. Standing HURTS SOOOOO BAD!!! I don't know why... But I would rather be walking or pacing or something rather than standing. But then I can't walk too much or that hurts too..

There is a fine line. But then sitting hurts also. I can sit for about 10 minutes and then I need to move or readjust the way I'm sitting (if I'm not allowed to get up or recline, like in class..)

But I went and did this zip lining course with my mom a couple weeks ago (which was SUPER fun by the way) and it had all these obstacles to get through up in the trees. We took our time and I made it through the entire course with relatively minimal pain... (I mean.. it hurt a little, but not too badly that I was angry I did it.) It was a little sore for the 2 following days, but overall, I did well and it was well worth it!

But I actually have more pain and discomfort today from walking around trick or treating than I did from the zip lining course..  

And it's hard to explain to people that know walking is painful for me, that I can do that course and feel pretty okay. It's hard to explain how different it is..

It's also hard to explain that I really don't know how I will feel from minute to minute. I knew my legs were weaker yesterday than they were the zip lining day also. So I knew it would be worse. But to explain that to someone that doesn't experience it.. To have them understand that I just know I'm not going to feel well after doing something.. It's hard for them..

And to be fair. I get it. It seems like a cop-out for things you don't want to do.. Like cleaning the house.... Or grocery shopping.. Or really anything that just sucks.. I understand how others that have never felt what I feel don't believe me 100%.

I mean, honestly, if I were a perfectly healthy individual, and someone told me they couldn't do the dishes (which seriously suck for me because of the standing) because they are hurting; but wanted to go bowling.. I would a little skeptical also..

It's all about balance and honesty with your loved ones.. But there is a line.. It takes time to learn for everyone involved. Chronic illnesses don't only affect the patient. They affect everyone in the patients life.

Anyway.. I hope you are all able to rest up today if needed and that you are all enjoying your weekend!

What are some of your "run over by a truck" activities? Do you ever experience skepticism from others? How do you handle it? Comment below! :)

I Am NOT A Drug Addict!!

 

This is big one for me.

I am living in chronic pain. Every single day... I have pain. All the time. The only relief I ever get is from sleeping. (I know some can't sleep.. So trust me! I do not take that for granted!)

However.. I still can't get any of my doctors to treat my pain. Not with anything! I don't really want pain killers. But SOMETHING would be nice!

It took me around 9 years just to get a doctor to look at my back because I said I am in pain. They looked at me (a young, seemingly healthy individual) and dismissed me as being a drug seeker. No one would take me seriously! For 9 years!!! And now! I have so many problems with my spine, the only 'treatment' is surgery. Which I'm not about to do at the ripe ole age of 25. Too many risks for my liking...

So with no treatment for any of my pain.. I just deal with it. And I hate it.

I hate that their is a stigma against people with chronic pain. I hate that we can't get the care we need and deserve because of others that are addicts.

I hate that the people that ARE given pain killers for their chronic pain are looked down on by the public. They are deemed addicts because they need their pain killers to live.

Could you imagine living in pain every day, and they only way to function at a semi normal level to complete your every day tasks required pain killers. And then. On top of all that hell.. To have people judge you for using your PRESCRIBED pain killers?!

I don't understand how people think it's okay to judge others based on what they think is 'excessive'.

My bestie was once attacked on social media for saying she uses pain killers. This 'person' had the gall to tell her she is just a drug addict because she uses opioids. All I can say is what a BITCH!

What the hell does she know!? And my bestie doesn't even the whole dose prescribed to her. She is super careful and tries to just tough it out anyway.

I hate not having pain treatment.. But while I'm finding new doctors, I think it's best to not be on any medication at the same time. This way, no doctor can dismiss my symptoms due to drug side effects. (Not that they wont try and dismiss for every other reason they can think of...)

Have any of you been called or treated as drug addicts because of your pain, or pain treatment? What do you/ have you done about it?
Share your stories below!

Are You KIDDING ME?!!?

Well, I had my echo at my cardio's office today. I just can't believe what happened. CAN'T BELIEVE IT!!!

Here is how it all went down.

I get there (totally late by the way, but I called and told them I would be). So the receptionist and the echo tech are behind the desk with the little window closed talking about how shitty of a person I am for making them wait. I guess they thought that little shit of a window was sound proof? They were wrong. Anyway. That was fun.

Then he called me back and of course I had to remove everything from the waist up. Whatever. He comes back in and starts the exam.

Go through he exam bullshit, take a breath, hold it in, release. Picture picture picture. Listen to heartbeat. Doppler. Done.

Cool. But my cardio wanted to look at it right away while I was there. I thought they may let me get dressed first, but no. I just sat there in that stupid paper "gown". So cardio walks in. They speak look at pictures. I overhear them saying I have PE. Then my cardio says I'm fine and my echo is normal. He leaves. So I ask the tech what is PE? (Because at this point I'm thinking pulmonary embolism.) He tells me "Oh, its pericardial effusion. You have a sac around your heart and you have too much fluid in yours. But it may just be normal for you."

SERIOUSLY!!!!!???????????????????

IT MAY JUST BE NORMAL FOR ME?!!??!!!??

I really hate when people say that. First off, it's meaningless because I have no baseline echo. So we couldn't possibly know that. But then I look it up. I have EVERY symptom! Those are the symptoms I went in there complaining about! And he told me I'm fine.

So he gave a diagnosis. Then told me it's not important. They don't plan to treat it or monitor it. In my cardio's eyes, "I'm perfectly healthy" (Please read that in a snotty snooty voice because I'm mocking him!)

I am so fucking frustrated!

How bad does it have to be before someone will acknowledge it's a problem? When I'm dead during my autopsy?! I don't understand. You just diagnosed me. That means there is a problem!! If there was no problem, there is no diagnosis!! What the FUCK!??

AHHHHH!! Now I need to find a new cardio. UGH!

Anyway.... That was my day. Hope you are all having a better day than...

What Is Normal Anyway?

I really hate that term. "Normal." It seems like it means nothing these days. To people, to doctors, to individuals. It's just a bullshit word.

When I first found out that I had EDS, I was blown away with how 'abnormal' I was. I mean, it is normal for me to do the things I do. But it isn't normal for others. I once asked someone if their toes bent backward like mine do. There genius answer. "No. But every one is different. So who is to say that isn't just normal for you." Normal for me. Exactly! But isn't that part of the problem!? I mean, if it's normal for me, but not for the other healthy portion of the population, then that means I am are abnormal. Right?! And I don't think being abnormal is a bad thing. In fact, in this case, I think it's a very good thing. It's good because it means my symptoms and my pain and my EDS is real. It means there is something different that makes what I feel real.

But then when people diminish that by saying "Oh, well it's not abnormal, just not normal for me", I feel like it belittles my diagnosis. It belittles my pain. It belittles me.

If were the only time it's happened, I don't think it would bother me, but it isn't.

My cardiologist was telling me how healthy I am and yada yada during my stress test, that I felt the need to set him straight. I am NOT healthy. And that is a fact. I have a bunch of random health issues. But I chose to tell him about my EDS and Chiari. He didn't know what Chiari is, and that's fine because he is a cardiologist, not a neurologist or neurosurgeon. They need to know to different things. Cool. But when he challenged my EDS diagnosis. NOT COOL! He told me I need to beware of the diagnosis. Because one doctor will say you have something, and you get it in your head you do, and then he can't convince you they are wrong. RIGHT. Because you know all? Obviously not, because you don't know what Chiari is. So he then asks me if I can touch my thumb to my forearm (part of the Beighton Scale). So I answer in demonstration.

Obviously I can. Right. So I thought that would shut him up.
But it doesn't. He then tells me, "Any martial arts teacher can do that." Seriously?!? That doesn't mean it's NORMAL! AAAANNNNNDDDDD!!!!! Those people have to train to do it! They have to slowly push their ligaments past where they should go to slowly stretch them out. Like yoga instructors. But I don't. I just am this way.

See the difference? I do!

But he didn't. And it bothers me.

It bothers me when doctors diminish my 'abnormalness' and when normies diminish it. It just bothers me!

In this case, not being normal explains so much. It's like a piece of me. It's part of what I am. I have EDS and that makes me abnormal. And I'm okay with that. I'm glad it has a name. I'm glad there is an explanation for my pain. For everything. Getting that diagnosis explained sooooooooooo much!!!!! A lifetime of random things that never made sense. A lifetime of being different and not knowing why.

Anyone else feel like their abnormalness is important to them? Am I alone on this one? Comment and share below!

Don't forget! Only 10 more days for the EDS awareness shirt! Click HERE !!!

Say What Now?! Are You Sure You're A Doctor?

It's about to get real up in here!

Today, let's talk about the shitty doctors out there in the world. I know that if you have anything actually wrong with you more than a common cold, you've met them. You know, the ones that say the dumbest shit.

I'll start. So, a little over a year ago I started seeing a pcp for a long random list of symptoms. They all seemed unrelated and from the first day I met him, he told me, "You're too young to have these problems." Um right. Because young people never have problems. Ass. I know what you're thinking. That isn't so bad. Don't worry. It gets better. And by better, I mean worse. 

At another apt with him, I was getting worse. I walked into his office with tremors and purple hands. Literally, my hands were purple. And ice cold. Even in normal temps. Anyway.. Any guesses to what he told me about that?

My Purple Hand

I'm sure one of you guessed it! "You're just creating problems now. This is all psychological." That's right. He actually told me I was thinking up my symptoms. The symptoms of having my hands turn purple. I must have a veeeerrrrryyyyyyy strong mind. 

That wasn't all though. Oh how I wish I could say it was... Later, after some testing and his decision that I had "too many problems, and I can't fix you", I had one last apt with him to get my annual out of the way before I met my new doctors at Mayo. I had asked him about Ehlers Danlos Syndrome because at this point, I had already been doing all my own research. So I asked him about it. His medical professional response? "I don't know what that is. I may have read about it in medical school, but I don't remember that." So I explained it a little. Then he got mad and yelled, "If I don't know, I don't know!" Then he walked out. And I left. And that was that.  

Oh how I wish that was the only idiot doctor I met. I had to go meet a general surgeon. (Cue booing now. They are the worst) So I get to his office because they found a cyst, possibly precancerous, on the head of my pancreas and they were checking to see if I needed the Whipple. Okay, so I'm there in the room after waiting for over an hour to see him and he went to put on gloves. Gloves to just touch my abdomen. Because you can feel a pancreatic cyst like that.... So I asked him, totally in a normal voice and everything, "Are those latex? I'm allergic to latex." Innocent question, right? I thought so.. But I guess he took it as an insult. Sorry my allergy offends you. So he gets loud and says "Read the box!" So I read it real quick (to myself) and say, "okay, good. Latex free." But that wasn't good enough. He yelled at me again to "READ THE BOX!" So I read everything on the box. Out loud. The last line on the box stated, "Non-sterile."  His insane response? "Oh! So you think I need sterile gloves just to touch you?!" 

Yes, that actually happened. 

I also had a rheumatologist tell me (after he diagnosed me hypermobility syndrome) that getting the genetic test for EDS would be pointless because there is no cure. So there is no need to know.

I really don't think doctors understand what it's like for the patient. It's not just a diagnosis. It's everything. It's a name you can curse. It's something to explain to people when they undoubtedly ask, "What's wrong with you?" It's your sanity. 

I don't know how many times I've wondered if I really am just crazy because I've been dismissed so many times. I don't know how many times I've cried in anger at another doctor telling me they just don't know. Doctors don't understand that the diagnosis is much more than just a label. It's everything to us. 

These don't even take the cake though. The worst part about the hunt for a diagnosis is that doctors feel that they get to pick and choose what they tell you. If I've learned anything, it is to ALWAYS GET YOUR TEST RESULTS!!!!!!! I don't think I can say this enough! ALWAYS GET YOUR TEST RESULTS!!! ALWAYS!!!!!!

Why is that so important you ask? Surely the doctor will tell me what it important, right? Well, maybe they should. But not all of them do! 

I have first hand experience with this. So please just trust me.

I went to the ED because I was having too many neurological deficits and couldn't find a doctor to listen. The ED doc was amazing and ordered me a brain MRI. They admitted me and kept me for a few days running all these tests. A few blood tests came back off, but they sent me home anyway. They said in the brain MRI, they found something (a white matter lesion), but told me "sometimes you need more damage to figure it out. So you have to wait till you have more lesions." So I took that and was thinking MS. I saw another neurologist for a year. Many many many more tests later and still, she couldn't figure out what was wrong with me. 

So I start looking through all my papers because I my insurance changed and I needed yet another neurologist. Well.... Guess what I find in my report from my very FIRST brain MRI... My diagnosis!! 

That is the day I realized I had Chiari and NO ONE decided it was "important" enough to share with me. So, now I'm waiting to see a neurosurgeon so I can have brain surgery... Which scares the hell out of me. Especially since I've met so many below par docs. I definitely don't want one of those crazies performing surgery on my brain. 

Well.. There are more stories of course. It's taken years... years!! And I'm still not completely done yet. So I'm sure there will be more.

It's your turn!! Leave a comment to share your terrible/ crazy/ whacked out doctor stories!! 

What's Wrong With You?

You're too young to have so many problems.
Why do you only use a cane sometimes?
What did you do to yourself?
Ya, I get tired too.
You should push yourself harder.
You're just being lazy.
You're not trying hard enough. We all get tired.
Are you just looking for attention?
*stares stares stares*
You aren't handicapped. I saw you walking just fine a few minutes ago.
We all have problems.
It could always be worse.
Well, what are you doing about it?
You complain about everything.
You seem depressed.
Maybe it's just anxiety.
I think you're just a hypochondriac.
Gosh, what can you do?
You should try taking *insert "miracle drug" here*. My friend had that, and it totally cured her.
I know someone with *xy disease* and they can still do ....
You were fine yesterday...
You're just using that as an excuse to do nothing.
If you really wanted to, you'd get better.

If I had a dollar for every time someone said these things to me, I would pretty damn wealthy! People I don't even KNOW!!! Total strangers have asked me "What's wrong with you?" or "Why do you have a cane?" "What did you do to yourself?" "You're too young to have so many problems."

Well you know what people!!??? Apparently God doesn't discriminate against age! How can I be too young anyway? What the hell does that even mean?! Like only old people have health problems? I'm sorry, but I'm pretty sure kids, teens, and young adults get sick all the time!!

There was one time, I was watching a movie about this person that has a disease. The person I was watching  the movie with (at that time though I was not diagnosed yet and they thought I was a hypochondriac making up all my symptoms) and they asked me, "So, are you gonna start having those symptoms now?" I'm sorry, but WHAT THE FUCK???!!! NO. I have the symptoms I have asshole.

People without chronic illnesses just really don't understand it. It's really hard to get it across to people too. Without ever experiencing it, how do you explain the fatigue is not just "I'm tired and a nap will make me feel better." People can't relate to things they don't or haven't had any experience with. It makes it incredibly difficult to share with family and friends the things we go through. I often feel shame for the things I can't do anymore, or the times I can't even think about doing whatever activity, much less actually do it. Shame and guilt are some of the biggest and worst emotions I feel because I am sick. I also get resentful. But the resentment is usually misplaced. For example, I'll get angry with someone because of how I think they see me. (Which is usually not a good perception at the time I'm feeling this way.) But that anger is really created based on how I feel about myself.

Having a chronic illness is like continually going through the grieving process. I go through all the phases. Over and over and over again. I will get angry about it. Then be fine with it. Then be sad about the things I've lost. Then be indifferent. Then angry again, and I go back through the steps over and over.

But you know what? I am grieving. I'm grieving the life I thought I would have. The life I wanted to have. The things that have changed. The things that I can't do. Everything. Everything has changed.

I'm not always angry though. Being sick has giving me so much. I don't take things for granted anymore. After losing many normal functions, I really don't take for granted balance and coordination. Things I never thought about before, but now I have lost. So when I have good days I am incredibly thankful for those things. I have also met amazing people and actually my best friend is someone I connected with because I got sick. Then we realized how much we had in common and our relationship just took off! She is my friend soul mate. I love her and am blessed to have her in my life. I also have more understanding and sympathy. I don't just to conclusions and judge people like I did before.

Of course, I do still get angry. But I have gained a lot. And honestly I am blessed. I am a broken bodied beautifully messy imperfectly perfect person. But I wouldn't change myself for anything.

What are things you've been told by others that just don't understand? Do you all go through the grieving process over and over? Please share by commenting below!

Talk About A Pain In The Neck

Today has been a really hard day. First of all, I woke up late. Which sucks because then I can't lay in bed for a few minutes to give my body time to adjust and ready to get going. I get super stiff in the mornings.. Thank you EDS. Don't know what I'd do without all the cracking in the morning. It's like I'm a walking bowl of that cereal. What is it called? Rice krispies. That's it.

Any way. So I woke up late and had to rush to get my daughters up and ready, make them breakfast, and make my oldest lunch and off to school. So because I didn't have my few minutes of adjustment this morning during my headless chicken state, my neck is killing me!!!! All day long!!!! Which then gave me a Chiari headache. It's like a normal headache I guess. But it's worse and starts at the back of the head instead of the front.

But because my body hates me so much, along with my sore stiff neck and massive headache, my hands have been going numb off and on all day too.

Plus! I think I'm getting a cold. Thank you youngest daughter. I may have to keep my kids from schools and become one of those homeschooling parents. Sending them there is like a death sentence for all of us. So far, every one has been sick. And now I'm the last to get it. Fantastic. I thought maybe, just maybe, God had my back this time and saved me from the torture. Nope. I was wrong.

And I have a French test tomorrow in my class! Tomorrow will be a long day. Ugh. Hopefully God is just playing a joke and I'm not really getting sick. Like tomorrow I'll wake up totally fine (aside from my usual problems) and he'll say "just kidding".

I'm thinking tonight will be an order dinner kind of night. I don't feel well. And the city had to shut down the water to fix a pipe somewhere and now we are on a boil water notice. Seriously. I do not feel like cooking, much less boiling water to cook and clean with.

Hope all of you have had a great day, will have a great day. Stay well my fellow chiarians and zebras. I have to go order some pizza.

My Beighton Scale Test pictures as promised!

 
  
This is me. Completing the Beighton Scale. 9 out of 9. I didn't take pictures of each arm and leg because its hard to take the picture by myself. But now you get the idea and see a real person doing it rather than a picture.

He are some other random pictures of my 'abilities' and some of the effects of having EDS.

Toes bend backward

 

Atrophic scarring

Easy bruising

Raynaud's Pneumonia 

See? My hands turn purple and get ice cold

Any questions? Comment and I'll  answer them all for you. :)

It's okay. I only dislocated my finger...

I haven't really gone into all the symptoms of EDS yet. Really because there are seriously sooooooo many. And not every person will have every one. Not all the types share them. But most types overlap. And no two people even in the SAME type will be the same. Its all very complicated...

But! I do plan to write up a general symptoms list with some great links tomorrow!

For now, I will share my symptoms.

For starters. I've already mentioned my Chiari malformation. (Which I'll go into more detail about that too. Just not right now.) Chiari is common among EDSers. I know you're all dying to know what the hell that is. But right now I'm talking about EDS so you'll have to wait. I hope you don't actually die. Just hang in there. I'll get it to.

So back to my other symptoms. I have poor wound healing, easy bruising, premature membrane rupture (during my pregnancy forcing me into emergency c-section. Ironically because of my poor wound healing, my incision reopened after my 6 week check up. That was really fun. Just kidding. It sucked.) , all over joint sublaxations and dislocations, chronic joint pain, back problems, herniated disks, adult developed scoliosis, lack of proprioception (knowing where your body is in space... Not having this makes me seem very clumsy. Well let's be honest. Because I lack proprioception, I am clumsy. But I walk into things often. Let's leave it at that for now) , bad balance, brain fog (also known as cog fog. Like cognitive function. Kind of like a "brain fart" that doesn't go away. Ever), bad eye sight (which I'll go into more tomorrow), atrophic scarring, hyper extension of all my joints, fatigue, and..... That's all I can remember for now.

I'm excited to take you all on my journey with EDS and Chiari. I hope to reach others with it and help in some way I can. Even if its just to let them know I'm hear to listen.

Stay tuned! Tomorrow I will also post pictures of some of my hyper extension and my ring splints! You won't want to miss it!

Have you ever wanted to just rip off your arms and legs?

I have!! Especially today! My whole body is so uncomfortable today!! I guess the only way I can explain it to someone that doesn't have EDS is this: It's kind of like when you need to crack your knuckles.... You know that feeling you get where they just get uncomfortable? You try to crack them but they just wont do it? That is what I feel in every single joint. Another example would be (for those that don't crack their knuckles to understand) would be like sitting in the coach section of an airplane for your entire life. You just can't get comfortable in those stupid little, no space to even sneeze chairs. That is my life. Every single day. I am just soooooooooooo uncomfortable!!! My right shoulder is one of my worse joints. So it kept falling out of place this morning. I know it sounds crazy to someone that has never witnessed it. I mean seriously? Before this started happening to me, I wouldn't have believed anyone had they told me their joints just fall out of socket. It sounds so made up. Well.... It's not. So my shoulder wont stay in it's stupid socket today. My knees are also very loose. Which makes driving a manual extra exciting. They pop back into place every time I straighten my leg. It's not much painful anymore as it is really uncomfortable and incredibly frustrating.

Aside from my more so than usual loose joints today, I have also noticed a new symptom and new pattern with it. My left eye droops. Only in the morning. The first time it happened I thought maybe it was a stye. But it just went away by the afternoon. It isn't every day. But every time it happens it's always in the morning.

My kids are gone this weekend. They are at 'grandma's' for the weekend!!! I got to sleep in today till 7:30!! It was bliss. I love my babies to bits! But it is soo nice having a little break! I'm watching "Satisfied" on demand. Such a weird show but I can't help it.. I really like it.

I wonder if one day, doctors will be able to safely give people like me fake arms and legs we can just remove when we need to. Then I would only need to worry about dislocating my ribs. No biggy. It only takes a few days to get those back in place. Ya know what? Maybe they could throw the spine in too. I hate mine. It's so jacked up.

Hard to believe at only 25 I have more problems than my most 50 year olds. Just part of the joy I guess. You wouldn't believe how many times I've heard "You're too young to have these problems." I just respond with "God doesn't discriminate." What the hell does that even mean?! I guess it's just something to say when you don't know what to say. But here is a little piece of advice for those of you that meet someone with a chronic illness. Don't say anything if you don't know what to say! More is not better! Something is not better than nothing! Just shut up! Listening can be very helpful for the chronically ill patient. Listening and understanding and above all BELIEVING them!!! That is what you can do!

Now, here is a hilarious video for you ladies and an educational one for the men. Please take notes!
Enjoy!