Admitting defeat…

Since I last posted my health has gotten worse.  I’m in a constant state of discomfort, afraid to eat anything, and just want to give up and lay in bed all day.  My back has been messed up for 2 months now and sometimes it makes it hard to walk.  Muscles spasms are now a daily annoyance, but I can’t take my relaxers because then I’ll really be useless at work.  My IBD has gotten worse and the medicines they’re trying so far don’t seem to help.  Any time I eat I get all kinds of issues, so I usually only eat when I’m going to be home.

My doctors are being awesome though and I’m so thankful for that, but I really wish I could have some sort of relief sooner.

I got denied for intermittent leave at work because now they only give that if you’ve been there a year.  My boss is trying to help get me through, but it’s getting hard to even show up every day.
I’m going to a convention next week for 4 days and I’m nervous.  I’m so excited to go, but with all my issues I’m afraid my body will ruin it for me.  I’m going to have to pack for the worst…  basically bring a medicine cabinet, braces, etc.  I’m also fighting with myself because I’m debating on renting a wheelchair or something to help me walk.  I usually walk fine, right?  So why would I need one?  But with all these muscle spasms and back issues I have problems.  Now I’m going to be walking around for like 10 hrs for 4 days.  That sounds awful, but I absolutely need to be there and enjoy the convention.

I’ve heard stories before, from chronic illness groups on facebook, of the comments people make when  you can walk but have to use a wheelchair.  I don’t even want to deal with it.  I really don’t even want to feel need to explain myself at all.  It’s hard not to feel like you’re being ridiculous, trying to get attention,  or lazy when people make comments.  I may know better, but even those that I’m close to may not be able to come to the conclusion that I need it.

I keep fighting with myself.  When do I admit that I can’t keep the ‘normal’ stuff up?  When do I say no to being able to do parts of my job?  When do I need to stop just sucking it up?  When do I admit defeat and be that girl in a wheelchair?


And Autoimmunity reared back its ugly head…

Okay, a little bit of a dramatic title…
Since being diagnosed with IBD I’ve been doing my research.  I actually didn’t know that it was considered an autoimmune disease before diagnosis, but G Almighty does that make sense.  I’ve been checked for some autoimmune disorders before and my new GP was concerned that it was a cause of things.
Anywho, I caught an interesting virus this time…
Alas, ladies and gentlemen, the 26 year old with immunity of a 5 year old…


I caught Hand Foot and Mouth disease.  The bottom 2 are from when it started (I know you barely see it on my face, but I couldn’t bare to show my hands) and the top 2 pictures are the current healing process about 2 weeks later.
For a period of time I couldn’t bare to walk or use my hands for much else other than using my phone.  I was in so much pain that I was in tears and almost ended up going to the ER because just walking to the restroom was near impossible. I missed a whole week of work.

It seems like my immune system just kind of picks and chooses when it works well.  Although, overall, it seems to have gotten worse (along with my IBD) in the last year.  Even getting out of a high stress environment hasn’t helped a whole lot.

Anywho, I wanted to share that because this peeling skin is driving absolutely bonkers!  Also, a coworker told me today that he was jealous of all my “vacations” and I’m not okay with it.  So there’s that, which may be another ranting post at a later date…

I have a thing! *confetti* (warning: there’s about to be some cursing)

Cursing in 3…




I’m literally so excited.
So I’ve been dealing with some gut related issues for 5 ish years now.  I shuffled some doctors around, tried a bunch of meds and waited and waited…   I finally found an amazing doctor.  Last October I had a scope that came with just some inflammation, nothing they’d pin as abnormal.  So things got worse and we did a capsule endoscopy. This time they must have found something because they said it was ‘indicative of inflammatory bowel disease.’  Obviously, I hear this and I’m like, ‘WHAT THE SHIT I ACTUALLY HAVE A REAL THING?!’
I’ve been trying to chase down causes for my constant discomforts and infections since I 13.  I turn 26 this weekend.  I’m so relieved.  Everything has always came back negative or normal…  finally, a thing!
So, new meds to try and 5 million more follow ups with my various doctors plus a fun procedure next month.  This little lady might end up feeling better…

And yea, I know….  this may not be something to be real happy about.  It’s an awful, painful disease that can make you real sick.  You know what though?  No one is gonna tell me that pain isn’t really.  Because everyone accepts that IBD is a real thing unlike Fibromyalgia. You can tell your friends that you can’t go out because your IBD is flared up and they’ll be fine with it.  Try the same but with fibromyalgia and people will think you’re faking and just being a shitty person.

I’ll take my new diagnosis, sir.  At least I can feel more confident  about what I feel.

A house with mystery guts

So in my last post I was feeling super hopeful thanks to a great new doctor.  Well I got my pathology report back and lo and behold it was negative. No explanation for the irritation or why I was having any other symptoms. I got a ‘keep taking your meds and see you in 6 months’ speech.
Another random occurrence in my medical odyssey.
I will be starting yet another wonderful journey to find a doctor, this time to replace my primary care.  She moved into a new office with all the nuts I can’t stand and the PA is only working at the women’s group.
So now I have extra motivation because this last week I’ve been fighting shingles.  This is the 3rd time I’ve had it and I’m 25.  Always in the same spot, it shows up under my right eye.  This bout has been the worst.  It moved up towards the inner part of my eye, down my nose, and swelled my whole bottom lid.  I also had some pop up on my mouth.
Adding this to regular cold sores and my bout of bells palsy years ago, I think I’m done with my face.  What reason does a supposedly health 25 year old go through this?  I honestly don’t understand.
I guess at least I can make the joke that I’m turning into a house?  (Get it?  Shingles…  haha)

Maybe some progress for a change?


Today I got an upper and lower scope.  I’ve gone through 6 years of GI problems and finally have a great doctor who seems to take me seriously and want to get me fixed. I’ve never got to experience a doctor visit like that before and it’s got me really excited.
Obviously getting ready for this day was awful and I wanted to die.  Thankfully,  it was like nothing happened. The doctor found some inflammation and took some biopsies. Obviously I don’t want them to find anything,  but I do want there to be something so I can fix it.  It’s a strange feeling that I’ve had forever.  Initially they’re thinking I may have a wheat allergy,  which would suck a ton, but also explain a lot and might actually get myself feeling a ton better once I start changing my diet.
Here’s to hoping it’s something forreally real.  And really fixable.

Travel time!

What’s it like to travel with chronic pain?
Well, sir, it sucks but it is totally worth it.
My trip to Boston was for work, so I couldn’t take it as easy as I would have liked.  I also went with my boss so I was even more inclined to put my pains aside.
Looking back I would say it wasn’t bad, but I pushed myself…  hard.  Every morning I had to walk around my hotel room to be able to even put my foot flat on the ground.  Of course it wasn’t helping the aches and pains that my body was pumping exta hormones out.  We trekked around Boston and Salem on foot and walked super fast through the airports.  I thought my calf muscles were gonna snap.
I still don’t think my body is fully recovered from the trip.  I worked the two days after we came back and now I’m prepping for a GI scope tomorrow,  then back to work I go!  I’m going to be so happy when I finally get to my weekend off.
I guess one thing I learned on this trip is that it isn’t bad to try to push yourself, it can be worth it.  I’m sure the change of scenery also helped with that.  The daily duldrum does start to wear on you and then certain everyday things seem impossible anymore.  By getting out, pushing yourself to do new things, you can have a refocused view.  Maybe you can still do that task that seemed impossible,  you just have to try it a different way.
Give me a few weeks though, I’ll be worn done again.  Too bad a monthly vacation is unattainable!

Frustration and the downhill slope

So I went to the doctor the other day about my muscle spasms fully expecting to end up having to get an MRI… I’d been having spasms all over that were pretty painful. No dice. They gave me more of the same muscle relaxers that I said weren’t helping a whole lot and naproxen. If I want to be any kind of productive I can’t take muscle relaxers and I think the naproxen messes with my stomach. I can’t work with extreme muscle spasms or after I take a muscle relaxer. I really can’t be missing work either. Eye rolls ensued. This is one of the many reasons why I hate to even go to the doctor’s office.
I was upset and in more pain over the weekend.  I almost went to the ER because I was in so much pain.  It made it really hard not to freak out on people.  I get to hear people all the time at work complain about health issues and all I want to tell them is at least they really know what’s wrong and can fix it with medicine.  I’m stuck with a condition that most people think is fake and medication seems to do more harm than good.  There’s no surgery for me, no magic pill. I know it’s not a fair thing to say. All ailments are tough on those who have to suffer them. Sometimes I wish I had something different.
After the last few weeks it just seems like it’s gonna get worse from here on out.  For a majority of my life it has been just an annoyance,  but all the aches and pains are becoming worse and more frequent.  What am I supposed to do about it?
If this is gonna get worse, how am I going to continue working full-time in my position? How am I gonna have kids?  I can barely keep my house in order now. I can’t even grasp the concept of not being able to do for myself and not being in control.
I posted an article on my Facebook that talked about the legitimate problem in those who suffer from fibromyalgia…  They said the focus should be on managing symptoms.  This got me frustrated again and made me want to post another rant blog.  I want to focus on resolving the pain.  I want to go out shopping all day without swelling up and having so much pain in my feet and knees that I’m completely useless the next day.  I want to wake up feeling rested.  I want to not have my current symptom page at my doctor’s office be a full page long.  I want to feel energized for more than just an hour like once a month.
-rant end-

No judgement zone.

I work in the health care field.  I know what people say. Any time I work up the nerve to finally get my ass into the doctor’s office I feel like they have to be talking about how much of a hypochondriac I am.  I’ve been getting tests ran for a stupid amount of things since I was 13 and the only thing that has ever been wrong has been that my Vitamin D is low. Currently I keep having chest pain.  It started about 5 years ago.  I wore a holter monitor and got an echo.  The cardiologist told my dad one thing, but apparently documented another.  A year later I went back to see him, we did a stress test (which I had an extreme allergic reaction in the middle of) and it was normal.  They also gave me a holter to wear for a month, which almost immediately broke and required me to call over a regular telephone each time I had an episode.  Obviously that just didn’t work. Now it’s almost every day.  It’s annoying and distracting.  I really hate to go back to the doctor over it.  They won’t do anything.  At least not productive or in a timely manner.  It’ll just add on to my record and give them more reasons to roll their eyes every time I come in. I know a lady that comes in to my work all the time and there’s never anything wrong.  I think she has some mental issues and she just wants social interaction.  I really do feel sorry for the lady.  But the attitudes of some of my coworkers when she comes in is really disheartening…  It’s like she’s become a joke.  Now don’t get me wrong, I’ve definitely made a comment or two usually along the lines of, “Oh look, there’s so-and-so again.  She must have missed us.”  The worst part is a lot of the time they make her wait.  They definitely do not use the same get-up-and-go attitude with her to get her treated and out the door like they do with most other patients.  I really hate to see the day when there is something serious going on with her and people are dragging their feet to help her. It really makes me paranoid when I go to the doctor’s.  I would show up once every couple of months and of course nothing was ever wrong.  I really hope they don’t see me in a similar light.

When can I say no?

Brain fog.  Leg pain.  Intense anxiety about how to juggle my life and work full time on second shift. 
Do I get to say no?  Do I get to have a break?  How can I somehow get some relief before having a complete breakdown?
I’ve felt like a complete idiot for the last few years as my brain fog seems to get worse and worse.  I’m only 24, so I can’t tell people that and have them believe me.  My job is absolutely affected and I don’t know what to do.
Physically I can handle my pain about 70% of the time.  I guess 100% of the time because I never let it be an excuse.  It’s easier that way.
My hormones are out of whack.  There’s no solution for sleeping.  Everything feels like a mess.  I feel hopeless.
Unless I have a complete meltdown, I don’t see a way of anything happening to help.
Maybe if I was older.  Or had a limp.  Or something people could actually see. 
I don’t know what to do.

Shortened rant…  and I don’t feel good about posting this…

The long struggle of blending in.

I’m guilty.  You caught me.
Rather, I caught myself the other day desperately trying to seem normal.  I really am making this an invisible illness…
The other day at work I was saying how tired I was when a coworker told me that they only got 4 hours of sleep and asked me how much I got.  I had to think about it.  Eleven.  Eleven freaking hours.  “I must of gotten too much sleep,” I blurted out after feeling like an idiot. 
Truth is, I’m exhausted all the time.  It has never mattered how much sleep I’ve gotten.  It’s like I forgot that I have fibromyalgia or something.  Maybe my subconscious thought it was just easier to say that without going into a whole conversation about how I actually have a chronic illness and that it’s a miracle when I actually feel awake.
I do have to admit, I would love to feel my age.  Unfortunately I was blessed with the aches and pains of a 60 year old.  I don’t want to throw it in people’s faces, but I keep finding myself dancing around the fact that I have fibromyalgia.
I hate to be in denial, but I want to spread awareness.  How does a 24 year old do such a thing?  Deep down I want there to be something that feels more real be the cause of all this.  It would be much easier if there was a cure for my situation. I want to be a normal, able young adult.  Shit, I’m expected to be such.
Someone stamp CHRONICALLY ILL on my forehead and let’s call it a day.