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 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...

It's Not You, It's... No, It's You...

Relationships are such a struggle being chronically ill. I don't just mean romantic relationships. I mean all relationships. Friends, romantic partners, family, work... All of them.

Relationships are hard. If you're healthy they still hard. They take a lot of work. When you have a chronic illness, they become even more difficult.

I have one friend. That's right. Just one. Singular. Friend.

But she is the best friend I could ever ask for. And why do I think that is? Because she is chronically ill too.

I know other people. And we talk sometimes. But I don't really consider them friends. They are more than aquantinces but less than friends. I don't know what to call them...

Its so hard to explain to people that aren't sick like me that I have to cancel last minute. Or if they drive an hour to see me, I just want to sit and talk. I like to be active, but my activity level changes quickly. And so does my pain. So if we have plans to go out and do something, and then by the time they get here, I can't do it anymore, people that aren't sick don't understand.

Its hard to explain that to people that don't or have never experienced it. Probably the only I can think to explain it is when people break their arm or leg or whatever. And they have a cast. And they can't go and do whatever their friends are doing. They get left out. Their friends leave them and go have fun. But our "broken bone" in this analogy doesn't ever heal...

People start to leave you out. They stop inviting you out. They leave you behind. And honestly. I totally get that. If I were a totally healthy person, I would probably do the same thing. I wouldn't say I got better miraculously now. But before I was sick. I was that person. It just makes sense. Biologically it makes sense. We have a desire to be with people similar to us. It just is the way we are. So while I think it sucks, I can't really fault them for it.

People will have the best intentions and say they will be there.. And I believe they do want to... But you lose that commonality with people.  And it's hard to explain to them what's really going on...

This is just about friendships though. It makes romantic relationships harder too. Romantic relationships need a lot of give and take. And when you hardly have the energy to get a shower, it's hard to go out f your way to do things for your partner. And often those fail too.

It takes a special person to be prepared and to love enough to be with a chronically ill person. And I know that sounds like an excuse for those that aren't strong enough. But it's not. Its just reality. And sometimes, reality just sucks.

How many of you have lost friends or relationships because of your chronic illness?

Anyone out there like me that lost all of their healthy friends in the battle? Share and comment below.

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 !!!

I Should Receive An Honorary Diploma

For how much I know about EDS. I've asked countless doctors about it, and they knew very little about it, if they had even heard of it. Yes you read that right. Tons of doctors have never even heard it. I thought doctors, being in the field of medicine which is always growing and changing, had to keep studying, researching and learning. To me, its part of their job description. Yet so many of them don't do this. It really makes me wonder if those that don't keep learning, and researching new things are just so content handling the normal things and treating colds that if a "difficult" case walks in, they already know they don't want to deal with it..

Now, obviously there are great doctors out there. But it seems they are the exception. There are way more content doctors out there. And its hard for the patient to have to sift through.

Especially if/when we find those that instead of just saying they can't help us (by lack of knowledge, jurisdiction, or they just don't care to), and they label us as crazy or psych cases rather than admit they aren't "all knowing and powerful".

Getting these labels of crazy in our medical records makes finding a doctor (good or bad) to listen very difficult. They treat us like we are crazy, drug seeking, attention seeking, hypochondriacs , etc.

Every time I walk into a new doctors office, I know I have to look the right amount of sick and right amount of well. I have to convince this new doctor that there IS something wrong, and I NEED help! I have to sell them on my case. Its exhausting, stressful and usually a let down.

I've been so "over" doctors in how they treat me and dismiss me. I just stopped going for awhile. And that isn't good. Because I need help. But when I feel no one is listening, it just makes me angry! And it makes question my own sanity. I start wonder, am I just crazy? Are my symptoms real? Is my pain real? But then I remember the one test I've had that always reassures me. I had my neuro exam and they were checking my reflexes. Simple enough. But it wasn't working. I lost all of my reflexes except for one. Only my right knee. And that was only a little. None in my arms, ankles, left knee. Nothing. My leg just hung there. And that always reminds that its not in my head. There is absolutely no way I can control a reflex. By the very definition of the word.

So with all these mediocre or even worse doctors out there that just weren't interested in helping me, I took to the internet and books. I've read almost everything I can on the subject of EDS. I now know more than my doctors. And that is just on researched material.

I often feel as though those with a chronic illness, regardless of what it is, should be honorary doctors. We LIVE with it! We know more than any doctor could.

I don't know about you all, but when doctors tell me pain isn't associated with xyz, I just laugh. Where did they get their information? Not medical journals. Because I've read those. How old is their information?

I just know that I know soooooooo much about my condition now, that I am starting to look down on doctors. Just like they do to me.

So where is my honorary degree?!

Have any of you noticed similar situations? Comment below!


Quick reminder about the EDS shirt available. 11 days left! Teespring.com/edsfightzebra

Are You Hitting On Me And Insulting Me At The Same Time?

So I went to see my cardiologist. Ugh. I wore this long floor length dress because I had class this morning. So I also did my makeup. Which I honestly don't do very often. So I thought I looked nice. I guess a little too nice. The first thing my cardio said was how pretty I am. Which is suppose to nice I guess. But it just weirds me out. He isn't there to tell me how pretty he thinks I am. And he mentioned how "fit" I am. Even weirder. Especially since the dress was just straight down and does nothing to bring out my figure.

So immediately after saying that he tells me all my tests came back normal. Of course they did. He already told me I am perfectly healthy. Even though I'm not. My heart may be fine. But I am not health. Anyway. So after he tells me I am fine and everything is perfect and I'm perfect. I asked him why I am experiencing symptoms still.

"Oh well women your age are just anxious and hormonal."

Thank you for that. Then he tells me that I can come back ever week if I get "cardiac paranoia" and think I'm suffering a heart condition every week and he will reassure me that I'm a okay! What a fucking insult.

So then he tells me that I look tired and rundown. Probably because I'm a "super mom" that just does too much and he told me to "take breaks". Because that is possible.

Then he tells me that pizza is the number one food that leads to obesity. And he told me that I need to watch my daughter (who is 2 and was with me) to make sure she doesn't get "too puffy" (yes. He literally said too puffy). And if she starts getting "puffy" I need to give her more veggies. Like my daughter is fat or something. She I perfectly healthy and very very active. She is not fat. I do not over feed my kids. What the hell?!

So he ends the appt after that. He always dictates right after and makes us stay while he does it. So he doing his dictation and going through all my results and pauses to ask me about where my echo report is.

He never ordered an echo for me! He says "well I have to send you for the echo! That's the most important test!" When he does with the dictation, he tells me that was his mistake and he will order that today and he will read it immediately and tell me I'm fine again.

So now I have to go back again. Ugh. Next Wednesday I have my echo. Which I feel will be a huge waste of time. But I'll go anyway. Just to be sure. EDS is known to be linked to heart defects. Might as well check it out.

So that was my wonderful appt. My doctor complimented me, insulted me, and called my daughter fat in all under 10 minutes.

I've had a very busy today. So I may be out of commission tomorrow. I'm in a lot of pain already and am relaxing on the couch.

Keep stable my friends!

Share some of your crazy appointment stories in a comment below!

Don't forget to check out the EDS awareness shirt for sale. Only for a limited time!
Teespring.com/edsfightzebra
Fight like a zebra!!

My Expectations Are Really Low

I'm seeing my cardiologist tomorrow afternoon to follow up after my tests. Ya. All those super inconvenient test he sent me out for just so he could prove nothing is wrong with mW. Ironic because I have tests that have been done before that show something is wrong. But of course he wasn't interested because he knows better than anyone else. Right.

This is same doctor that told me "you look too good to have to children". During my stress test. At 7 in the morning. Before I had coffee. Ya. I'm sure I looked fantastic. What an ass..

So I'm sure tomorrow will end with me more enraged than I've been for awhile. But we will see

My expectations are soooooo low.. But I'm sure he will find a way to still disappoint.

Don't forget to check out my shirt for sale! Only available for 14 days!
teespring.com/edsfightzebra

I know you'll all be checking in tomorrow to see how my apt from hell goes. So till then, be safe and stable my friends. :)

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!! 

More Blood Work.

Had to go get my blood work drawn this morning. Fasting. Of course. I hate that. I love a cup of coffee in the morning. Anyway. It was only 4 viles of blood today. The most I've had done at once was 12! That was ridiculous. All to look for "what was wrong with me" even though they already the diagnosis at the time. Doctors are stupid. My topic for tomorrow by the way.

My cardiologist is checking for random things... Although my test results will probably be normal because that's my luck. But I see him again on Tuesday. So we shall see.

I know only chronically ill patients will understand what I'm going to say next.

I hope he finds something. Anything really. Just something. Something to validate what I'm feeling. Something that may explain my symptoms. I don't care if its purple elephant disease. Just SOMETHING!!

I am hoping. He was a huge douche bag when I saw the last two times. (More about that tomorrow) But I can't switch. So I'm stuck with him.

Anyway, I've been feeling really shitty today. Sooooo fatigued. Mental and physical. My muscles are exhausted. Its hard to move around today. They are so tired of working, I was standing earlier today and almost collapsed.

Not having a good day. But I did manage to get some dishes done, but not all, and I prepped our dinner for tomorrow. We are having a guest come over for dinner tomorrow, so I'm making my ribs.. They are delicious and my boyfriends favorite thing I make.

So how has your day been? Good day? Rough day? Weak today? Leave a comment below!

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!