Disconnected.

I’ve generally always kept to myself and was absolutely fine with all the alone time in the world.  Now I think I’m going crazy.  I’m having a hard time coping with everything that’s going on and what the future might hold.  I only have my husband to talk with about it.  I don’t feel like anyone else I talk to (which is very few) will understand.  I know friends and family might take offense to that statement, but at this point I need someone who knows what I’m going through and can help me get to the next step.  I need more than the conversations that just consist of “Oh that sucks, I’m sorry,” although I do greatly appreciate it when someone cares enough to listen to me.

Since we’ve moved to a new state, I’ve isolated myself even more than normal.  I was already having worsening health at the time of the move and wasn’t looking forward to having to change jobs.  I’ve had a hard time coping with cutting my hours and changing my work to fit me better.  I have two jobs, a part time and a PRN.  I had to fight with the occupational medicine doctor for weeks to get them to clear me.  It’s all put me in a state of mind where I feel like I’m just going to be let go for my health at some point anyways.  Even at my last doctor appointment it was mentioned that there was a possibility of having a “medically-induced” career change.

This has made it that much harder for me to make any connections with people here.  The only time I leave the house other than the regular adult things is to go to work.  At my part time job, the group I work with is pretty close knit and a lot older than me.  My PRN job has some people my age with similar interests, but I want to quit that job so bad because I’m always in pain when I leave that I can’t get myself  to try to socialize.  This on top of being  complete ate up with my health situation at the moment makes me a real bore to talk to.

In all honesty, I’m probably depressed.  We already know my anxiety has been kicking in too.  Any chance I take to talk to people about things usually ends up with them either blowing over what I said or them telling me something ridiculous like I need to stop the doctors everything.  I’m afraid that my health is going to ruin my life.  I was doing really well…  I graduated college, got a well paying job, bought a new car and bought a house.  Now I’ve been dialing back on pay and hours to be able to work without killing myself, which makes it more difficult to keep our heads above water on the financial front and we may not move back to Indiana where our house is.

I really dislike uncertainty and that’s about all I have at this point.

I like having clear plans.  I like having executable lists.  Other than going to the grocery store, I can’t implement that in my life anymore.

I desperately wish an excel sheet could give me all the answers…  Or maybe I could find a peer that can understand me.

Anxiety set in.

I started writing in this blog as a way to blow off steam.  I may not have posted much, and to be honest, it’s not like I’ve had a super terrible journey.  Thus far, I’ve been pretty lucky and I’ve always kept that in the front of my mind when it comes to all my health stuff.

I sat down in the wee hours of the morning while everyone was asleep and compiled all that is currently happening in my journey right now.  It hit a little harder than I was prepared.  I’ve been so busy thinking about other things since we’ve moved that I hadn’t let myself really take in everything that I’m experiencing with my health and with my doctors.

This may all be thanks to part of my test results coming through yesterday from my last doctor visit.  Really just the fact that I don’t have all the results yet does not sit well with me.  And yes, I am that kind of person who signed up with LabCorp and Quest to receive all my test results after they’ve been sent to my doctors.  I’m an MLT and I need to know my results.

Anywho, I only got part of my results and that part was positive.  It’s pretty much a non-specific test but still has me on edge and got me focused on everything that’s going on.  Currently I have 5 specialists, am being evaluated for another autoimmune disease, possibly starting biologics soon, need to get setup to do physical therapy, and probably will have surgery this summer.  I can’t even imagine what else I would get myself into if I brought up any other concerns I have to my PCP.

If my body just gives up, I’m gonna be in a bad place.  And trying to get my health straight, not even counting trying to eat right or exercise, is damn expensive.  I’ve gotten to the point where I really can’t handle working full time in a core lab anymore, so I’ve had to lessen my hours (PRN in core lab and part time in Micro) which means less money.  I got on the best insurance I could (a.k.a. EXPENSIVE) and still want to puke to think about adding on all the other costs for treatments coming up.

Needless to say, I still struggle with my needs, wants, and identity…  In general and when it comes to my health. I never know what new and weird thing my body is going to do next and send my doctor on a witch hunt to find the culprit.  (But seriously thankful for this new PCP with an attitude like that.)  From muscle spasms, to hot and red knees, to my fifth bout of shingles on my damn face…

I guess I’ve always been kinda okay and laid back about these things because I hadn’t had a real concrete diagnosis and my symptoms didn’t stack up at the same time like they do now.  I’m getting diagnoses, I’m getting more abnormal lab results and I don’t know how to really cope.  I’ve been used to there being a sort of end point to things…  like, I got my xray and did my course of steroids so we’re done with that issue even though it’s not resolved.  I don’t think that’s going to be the case now with most things which maybe a good thing in the long term.

Who knows, maybe 2017 will be my healing year.  I’m just tired of waiting to get through it.

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

Cursing in 3…

2…

1…

HOLYFUCKINGSHITBALLS I HAVE A REAL, MEDICALLY ACCEPTED AS FACT DIAGNOSIS!!!!!!
IT’S A MOTHERFUCKIN MIRACLE!!!

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.

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.

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.

What’s with the blog title?

You can’t count spoon when you’re young.

Society can’t accept it, you know?  I was in high school when I was diagnosed.  That gave me a reason to finally be able to tell people ‘Hey, I can’t do everything, there’s actually something wrong with me.’  It may have gave me reason, but no one wants to listen to that, not to mention a lot of people don’t even think Fibromyalgia is a real thing.

Right now I do pretty okay from day to day.  I work, I come home, sometimes I try to clean, sometimes I don’t.  Some nights though, especially when I work weekends, all I want to do is cry because my legs and my back just hurt so bad.  People hear this and think I’m just being overdramatic.  ‘All these other people can do the job just fine and they don’t complain.’  Well, what am I supposed to say to that?  I’m a 50 year old trapped in a 23  year old’s body.  Good luck trying to get anyone to take that  seriously.

So there ya go.  People won’t let you use Fibromyalgia as an excuse when you’re young.  You’re young; you have all the energy, you can go on 3 hrs of sleep just fine, you can work hard and it won’t even effect you.  Man I wish.  I try it all anyways because no one wants to hear that it takes a big toll on me, it obviously takes a bigger toll on older people because… why do we have this preconception again?  I don’t even get it.

Maybe if I had to walk with a cane or had to use something that people could see it would change how people see it.  Honestly, I’ve had to use a knee support before and I just wanted to hide it.  Crazy isn’t it?  Here’s something material that people can see, but I want to hide it because I’m scared people with think I’m faking that too along with everything else.

In high school I used pain-relieving patches like Salonpas and once… ONCE I tried Icy Hot.  I went to my first class, sat down, waited for the teacher…  I sat between the metal heads and the jocks.  After about 15 minutes all of the jocks started asking eachother if they were using Icy Hot.  I was so embarrassed.  I didn’t say anything.  I even did the sprays that smelled like peppermint and were supposed to help, but you can’t just run around smelling like peppermint.  That’s not normal and everyone knows and wants to know why.  It’s just a big hassle.

Anyways, I digress…  I thought the name was actually kind of perfect for my life when it comes to dealing with this.