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.
Ggaararaggggaaaahhhhhh!!
-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.

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.

In my attempt of gaining hold of my health…

So the last few months I have been super pessimistic when it comes to the fibromyalgia label that I’ve been stuck with.  I don’t like it because all my health problems seem to be pushed to the side because of it.  Anywho, I’ve tried to refocus my unrest on my lack of control of my health by making a journal.
The NP at my doctor’s office (who is amazing and the only reason I still go there)  told me a long time ago that I should try logging my symptoms and what I’m eating.  I always have trouble keeping up with things like that, hence why this blog goes months without a post.  I tried a couple times to keep a notebook, but it never worked.
Well, ladies and gentlemen,  with the help of pinterest, I do believe I found my holy grail!
I created a page in publisher that is custom to my needs and allows me to be creative.  I think this will make my morning habits healthier for me too; wake up and journal (and doodle).

image

I definitely need thicker paper and a kick of creativity, BUT for now I’m pretty darn proud of myself.
I’m hoping this project helps me and the NP see some patterns we didn’t realize before.  I’m already surprised at my symptoms throughout the day.  I guess I’ve just brushed them off after dealing with this so long.

Hope this inspires some of you to take back your health!  It’s hard to keep fighting for it when you’re labeled with an invisible illness.

Continue to suffer, there’s obviously nothing wrong with you anyways.

Today I am having a breakdown.

I work second shift, so I don’t wake up until 11, 12, maybe even 2 or 3 some days.  So I wake up today on my day off and work up the nerve to make calls and try to take care of some things and make appointments.  The last call I made was to my GI doctor.  But first, some background information before we get into the deets….

I’ve been dealing with some GI issues for about 5 years now.  I used to be super embarrassed about it, but over time I’ve just gotten fed up with it.  So last year my primary doctor sent me to  them because what they were doing wasn’t ending the issue.  The GI doc suggests some things, gives me some stuff to try out.  I do what he asks, minus some crazy medicine that they failed to mention was a compound prescription.  Thinking back, I should have probably went through the trouble of dealing with the formulary and paying a fortune for the tiniest tube of crap that probably wouldn’t have helped, but I had better things to do.  I go back a month or two later and no changes.  He tells me to continue what I’m doing, some people take longer.  (It’s been 5 yrs m*f*, no sh*t.)  He said if it still isn’t getting better to come back and see him and then he’ll probably schedule me for a colonoscopy.  Oh the joy of that prospect.  Well, things haven’t gotten better.  SURPRISE!  I refused to go back until I got onto my husbands insurance because the insurance from my work would require me to have the colonoscopy at my work or pay a ridiculous amount of money.  Neither of those options seemed logical.

So I’m on my husband’s insurance now and I finally called to set up an appointment…  I wait on hold for 3 or 4 minutes.  I realize it’s Friday afternoon, the last day of the week and everyone is trying to take care of their last minute stuff before leaving the office.  I deal with this at work every Friday I work, so I get it.  The girl finally gets to me, asks for my information and what I usually see the doctor for.  I tell her, hear her start to say something then a muffled noise where she’s covering the mouthpiece of the phone.  She comes back and says they can’t get me in until mid-March in the afternoon when I’ll be at work.

I had to have been dead silent for a good 30 seconds.  I’m not taking off from work for that.  Especially if they’re acting like I’m an idiot for coming to their office for something that isn’t as serious as colon cancer.  I know that comment made on the other side of that muffled phone noise was something along the lines of, “Why do people come here for stupid shit?”  I work in healthcare, I know how these people act.  We  make judgments before knowing the back story.  It happens, it human nature.  But this has been a settle attitude every time I’ve dealt with them.  I told the girl not to worry about it, I think I’m just going to find another doctor and hang up.

I can’t deal with that.  It’s been 5 years, you guys can’t fix what you deem to be a simple problem so I’m pretty sure I’m not the idiot here.

Unfortunately I’m starting to feel the same way with my primary doctors office even though I absolutely love the Nurse Practioner there.  Every other person that works there acts like I’m an idiot and I’m the person that actually runs all these tests.

I have no idea how to make anything that I feel become a real thing.  Almost all of my test results come back negative.  There’s nothing really wrong with me.  I’ve been watching my iron slowly drop and me become slowly more anemic.  I guess we’ll just wait until I end up with something serious because God forbid we take care of anything.  Let’s all give up.  The medicines didn’t work and the test results are always negative for everything.  F*ck it and your fibromyalgia diagnosis.

Hey Newlywed, It’s All In Your Head

Hello everyone! I have been gone quite a while. I did try to post a while back, but this new editor was not cooperating…
Anywho! I just got married on the 18th to my best friend and went on a 5-day vay-kay in the Bahamas. It was absolutely amazing and I’ve never felt more love and happiness in my life. The wedding was beautiful and of course the Caribbean was too!
Considering the subject matter of this blog, we’re now going to take a look at the not so happy and shiny part of my story. (Insert ominous ‘dun dun dunnnnnnnn!!’) I was really interested in how my wedding was going to go as far as being a bride with limitations. I read articles about being a bride with a chronic illness and basically got more comfortable with the fact that I needed to make sure that I would be comfortable on one of the most important nights of my life. That idea wasn’t so hard to take in considering our wedding was a little unique to begin with(Dr. Who theme FTW!).
I threw the idea of wearing heels out the door on day one. There was no way that was going to work. Put me in heels and make me stand in place for more than 2 minutes and I will bite your face off. My calves were not made for such abuse. Instead of traditional footwear, I went with converse with my last name written on them. The groom and ushers also wore chucks, so I wasn’t out of place.
My dress was also took into consideration. I learned a tough lesson at my senior prom by wearing a dress with a built in corset. If the boning is not steal, I cannot deal! That stuff bends by the end of the night and presses down on my ribs like no other. Of course, I didn’t even think about my fancy underthing the bridal shop gave me to wear under it. Oops, it had that awful plastic boning and it about bruised my rib cage. So I was sore, BUT! the dress itself was so comfortable. Empire waist, pockets, and the feeling of a play dress. When I put that thing on I feel like a pretty little doll and just want to frump around in it. I didn’t need to worry about any lumps or bumps so I wasn’t trying to suck in my tummy all night. It was perfect.
Up to the big day, I couldn’t have had more than 4 hours of sleep every night for the 2 weeks previous. I was so busy and had so much going on. I don’t know how I didn’t collapse from exhaustion. I guess I was too excited. The night before I finally got to sleep in with my now husband. It was glorious.
Everything went pretty smoothly. I’d get stressed every once in a while for a second, but my friends and family were amazing at resolving anything and making sure I didn’t have to worry. I was very afraid that my body would respond to the stress by making something crazy happen (it likes to make cold sores pop up, or even one time I got Bells Palsy the night before an interview). I felt rested and honestly can’t remember having any complaints pain-wise.
I was tired and worn out after. Obviously. Still not bad though. Honeymoon time rolled around and I was a little concerned on how the plane ride would go. I don’t know who can fit in those seats comfortably. I can’t and my husband is a big guy. Luckily we only had minor discomforts. I booked our seats in an emergency aisle so we had lots of leg room and no one ended up next to us so once we were in the air we had plenty of room.
Plane ride over – sore. I thought that going to the Bahamas would take a giant weight off my shoulders. Like I would feel 100 pounds lighter and the pain would just disappear. That wasn’t quite the case.
I wasn’t slowing down for anything. We weren’t there for long and I wanted to do as much as possible. My hubby was such a trooper and was right beside me the whole way while he was dealing with a sinus infection. All that going, walking (especially in the sand!), riding in uncomfortable taxis and sleeping in uncomfortable hotel beds… it took its toll.
By the last day I was aching real bad. I still didn’t slow down, but man I wanted to. The plane ride home didn’t help either. I took a good 2 days for my hip to stop trying to pop out of place. Get up from the table – hip goes crazy. Get out of car – hip wants you to fall out of car. Worst pain ever. Btw, if anyone wants this right leg of mine, it’s all yours. I will not miss it.
But we survived. Much better than I thought we would. I’m still worn because of course work has been crazy and I have no idea how I survived without a vacation for so long. My body is a wreck, but c’est la vie for the Fibromites!

My long mild flare of hell…

So I don’t know what it is, but I have not felt quite right lately.  Ever since my schedule got jumbled up due to coworkers taking their vacations I just have been off.  I honestly hadn’t felt awful for an extended period of time in quite a while.  My knee would hurt, my feet would throb, my head would feel it was going to burst.  My ovary felt like it wanted to jump out of my body, my back muscles kept contracting, and my random faint chest pains came back.

It’s been ok though.  I get just enough time off to be able to handle it all.  The end of the night is awful, but I feel alright enough in the morning.  It’s all good.

Well, last week I started getting to the point where I thought I was going to start having panic attacks.  Needless to say, I thought this was the best time to take a little time off from work.  I had my weekend, worked a day, had a day off, worked a couple more, then had 5 days off.  It’s been glorious, but I’m still worried.  

I had a couple of incidents a while back where I developed a blind spot in my vision, like some one blinded me with a really bright light.  It would fade in, stay for about a half an hour and then fade out.  The docs said no big deal, probably a migraine.  Well, similar, less extreme incidents like that have been happening just about every day for the last couple weeks.  My memory has really gone to shit.  Like no joke.  I’m usually awesome at remembering everything.  I make it a point to be overly prepared for things.  I have completely dropped the ball a million times it feels like in the last week or so.  I’ve also been feeling a bit manic.  Like, I just randomly get all this energy built up out of nowhere and I usually never have energy.

Should I go to the doctor?  Nah, what good would that do me?  That never seems to fix anything ever.  I felt so sick over the weekend I seriously thought that I’d have to go to the hospital.  Thankfully my fiance got me out of the apartment, moving, eating, drinking and I ended up feeling better for the majority of the day.

But really, where am I supposed to turn when it seems like there’s no helping my issues?  Since I started this journey, the only that has ever been ran by these docs that came back with a result was my A1c (had a hypoglycemic phase) and my Vitamin D.  How am I supposed to tell when something is actually wrong with me when every time I develop a new symptom they just toss my ever growing pile of symptoms and say that there’s nothing wrong?