Aware.

Getting dumped into the fibromyalgia category is a quite a journey.  For me, it started when I was 12 and we didn’t get to a conclusion until I was 17.  Every person has a different path, but it seems that two things are a constant: 1. It takes years to figure out why you’re in pain all the time, and 2. There isn’t enough information or the information isn’t taken the way it’s intended.  It blows my mind really.

I was diagnosed by a pediatric rheumatologist that reminded me of Count Olaf from Lemony Snicket’s A Series of Unfortunate Events.  The hair and body type was dead on and he was, at least in my head, a mean doctor.  I’m sure the examination of trigger points didn’t help my view of him, however it was the comments made when it came to exercise that really made me not a fan.  I would do what he wanted, nothing changed.  When this all started I was within my appropriate weight for years anyways, so I didn’t see the point.  He said that he should come to my house and whip me with an extension cord…  in front of my mother.  What kind of shit is that?

Needless to say, I didn’t go back to him.  Now I don’t know if it was because I’m not as educated or if it was because he was not as educated, but we didn’t have a real understanding as to what was going on, what was ruled out, or anything inbetween.  My pain wasn’t interfering too much in my life for it to be a huge issue so I continued on my meds and went about my merry way in life.  I didn’t mention it a lot to people because most people thought it was a made up condition at the time anyways.

Today I am a medical professional and make sure that my doctors explain everything to me and take a vocal role in how my treatment is handled…  Even if I feel like a fish flopping around on the ground in this situation…  It’s always complicated with me.  I have symptoms, nothing really shows up on tests, there isn’t really any damage as far as they can see, so there’s nothing to do.  It’s frustrating to me and it’s frustrating to the doctors.  The most important thing to have in my situation is well educated doctors that are keeping up with new research.  This means university doctors for me.

I was hesitant to see new rheumatologist.  I’d been handling myself with just my PCP, a gynecologist and a GI doc quite well.  The feelings I had from the old rheumatologist came back and I just felt like I’d be berated for being overweight and that would be it.  To my surprise it was nothing like that.  She was critical in the way she examined me and went over my history, as one should.  She didn’t think my new issue was a new condition, but she was going to do the workup anyways.  When she asked if I had any questions, I hesitated and eventually just told her that I hate my fibromyalgia diagnosis.  I told her that I never really trusted that it was my answer and I never felt any better.

Her response to that comment made an impact on me.  She explained to me that they believe it’s your nerves confusing signals as pain and how exercise trains those nerves to stop interpreting that stimuli as pain.  This made sense to me, especially after seeing the work done at my previous research job.  I felt better about it.  She even gave me a pamphlet for a place that works with a lot of her fibromyalgia patients for pain management.

So a few weeks ago I went to find groups on facebook that I could join and talk to others with fibromyalgia.  I mean, let’s face it, dealing with this stuff makes for a lonely existence.  I found a couple groups and after a day of my newsfeed being completely full of my new fibro friends, I couldn’t take it.  The posts were full of pseudoscience, issues that have nothing to do with fibro, questions that should be strictly for a doctor and everything inbetween.  My impression: most of these people have an actual diagnosis that their doctor didn’t find and most of these people have doctors that aren’t educated enough to educate their patients.

I had to get out of there.  I felt terrible.

Keeping on top of your health is extraordinarily difficult when you’re dealing with vague symptoms, overlapping diseases, uneducated doctors, stubborn doctors, you yourself don’t have a background in healthcare and if you’re dealing with cognitive issues thanks to your condition like many of us do.  There is a serious lack of awareness with this condition that we’re learning more and more about all the time.  It makes it even more difficult when doctors are giving up on diagnosing their patients and throw them in our category.

This being said…

May 12th is Fibromyalgia Awareness day.  Please take a minute to do some research, visit http://www.fmcpaware.org/ , talk to someone who has fibromyalgia and learn about their experience.

 

The f*ck was I gonna name this…

Changing jobs has been difficult the last two years.  Mentally, I’m not the best anymore.  I struggle finding words, I get things backwards, I have a hard time with numbers and letters.  I was thinking about how my training has gone with my current job and one thing stood out…  one person just kept saying “You need to think more carefully, slow down.”  They probably think they’re giving me sound advice, but that’s not the issue at all.

I feel like I’m always talking about my aches and pains (even if I’m not because I’m still talking about it in my head) so it irks me even more to remind a person that knows me that I have fibromyalgia.  Having said this, I barely talk at work.  I’ve become so dull minded that I can’t keep up with conversations, especially with people I don’t know well.  So who can blame them for not remembering, I can’t remember what I did 2 minutes ago.  

It’s so utterly frustrating not to be able to be there mentally like I was before.  I was quick with smart remarks, aced every test, was confident in my knowledge, excellecent at spelling and grammar and could remember things in stupid detail.  I rarely participate in conversations now because by the time I formulate a response to a statement everyone has already talked about a different subject matter and are on to the next.  I keep a personal planner and have a big calendar and look at them constantly because I’m so afraid I’m going to miss something.

I feel like it’s all just slipping through my fingertips and I can’t do anything about it.  I just have to sit there and look like a dunce because I can’t just shove my big “I have fibromyalgia! ” flag down everyone’s throat.  Shit, most people think that’s an imaginary flag anyways.

My biggest fear is that I will end up being seen as being unfit for my job.  I’ve already struggled so much with my health and working that I can’t fathom what I’d do.  It’s been 15 years and things just progress instead of getting better.
And all this just when I thought I was on a new road to accepting fibromyalgia…

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.

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.