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.

 

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!