I have sat for nearly an hour struggling to find the right words, or any words at all, to fill this page. I struggle most with the idea that some may think I am seeking sympathy or pity, that is not at all what I want. Secondly, I struggle to accept that there are those who still believe Fibromyalgia is a fictitious disease; made up by the weak and lazy. This couldn't be farther from the truth.
Fibromyalgia is an incurable, beast of an illness that not only effects it’s patients physically, but also mentally and emotionally. It's a daily struggle for those inflicted with this diagnosis and for those who are closest to them.
Below is a previous post, written several months ago, about my journey living and dealing with Fibromyalgia. I hope it bring awareness and knowledge about a disease that's mostly ignored or pawned off as a non-issue.
I’m not a morning person, never have been. My attitude and appearance are reminiscent of what you'd image a bridge troll looking like. This is likely do in large part to the fact that I can’t tell you the last time I slept through the night. I wake up 3 to 10 times, sometimes for a few seconds and other times it’s for a half hour at a time. How I wake up is another story...
Sometimes it’s falling off a cliff, other times it’s getting hit by a bus. Once I even fell onto a board of nails during a circus act. It’s amazing the way your brain can conjure up different methods to alert your unconscious self that you’re in physical pain.
Not that it matters how well I've slept or not slept, with Fibromyalgia I've also found a friend called Chronic Fatigue syndrome so sleeping and waking up rested never happens. Lacking restful sleep, and not being a morning person in general leads to one very important fact, if you ask me a question before I've had an opportunity to trap the bridge troll and replaced it with a unicorn (or a hot cup of tea) you’ll get grunts and mumbles…if you’re lucky.
I was diagnosed with Fibromyalgia and Chronic Fatigue when I was 20. It took several different doctors and a battery of tests before I was officially given a diagnosis, not to mention an array of weird or rude doctors.
I'll never forget being asked to do a back-bend in the exam room. This Rheumatologist thought he could better "assess my pain levels" if I performed this task. The look on Tim's face was priceless.
Amongst the wack-a-dos I also had to deal with the nay-sayers who told me the pain was all in my head. There were also those who thought they had the answers to cure Fibromyalgia. I've tried just about everything out there; gluten free diets, massage therapy, different types of exercise, vitamins, herbs, and of course medications. Some medications did help to elevate the pain, but the side-effects were awful and staying on them just wasn’t an option, at least not for me. Other treatments help, but I've accepted that I will always be in some type of pain.
My unicorn will always have an ace bandage on his leg or a band-aid on his magical horn. That's just the way it's going to be and I think I have done a pretty kick-ass job of dealing with it and not letting it stop me from living life. I work full-time, run a small rescue, write this blog, take care of a household all while dealing with the everyday aches and pains that have become a part of my normal.
I don't know why I find it so much easier to share my infertility struggles or my journey through miscarriage, yet I seem to hesitate sharing this part of my life. Perhaps it's because there's still a lot of stigma surrounding the disease. Some people believe the diagnosis itself is poppycock, just an excuse for someone to be lazy or gain sympathy. Some just aren't open to the possibility that outward appearances can be very misleading. Underneath the smiles and pretty clothes there can be a lot of physical pain, a lot of turmoil. Trying to force someone who just doesn't want to understand, or isn't open to the idea of something they can't relate to, it's just not worth the struggle.
So what does all this mean? Well, it means that sometimes you may run into me at the store and I'll be a happy, chipper and well dressed gal. We could carry on a conversation and you'll think nothing strange of the encounter other than I probably said something a little silly or unorthodox (that's just the Black Crayon in a Box of Neon Colors) and we could depart with a quick hug. Other times you may run into me and I'll be wearing sweats and seem a little...lost. It's Fibro fog and it happens more often than I'd like to admit. The inability to focus or concentrate on any one task without sincere effort. Like a bird that just flew into clean window, shook off and proceeded to fly back into the same window simply because they forgot they already tried that route. I might shy away from a hug and go for an arm rub instead because a squeeze around my back would feel like baby knives making chop sushi of my insides.
I don't let it control my life. I could, but I don't. I play volleyball, I go for long walks, exercise, mow the lawn, swim, etc. I refuse to let what others view as a handicap or a fictional illness keep me from living my life. While I know there are those out there who take advantage of the diagnosis, who play the victim, that's not me and I don't want to be judge based on something I didn't ask for nor do I have any control over. Sure, I have days when I move like a 90 year old and days when a long walk looking for sheds with my husband aren't a good idea, but I also know that sitting around feeling sorry for myself doesn't do anyone any good, including myself.
If you know someone whose been diagnosed with Fibro or hear of someone who has it just try to remember these things:
I am so beyond frustrated.
This nightmare HAS to end. I have so little left in the tank. I am going to stall out and no one is going to be able to jump start my battery.
I finally put my foot down last week after yet another blood draw where my HCG levels still had not decreased appropriately. The doctors office called and my doctor, yet again, wanted more blood work the following week. Enough is enough.
My D&C was October 28th, it’s been 4 months. I asked for the doctor to call me.
When the doctor did call he received more than an earful from me as obviously leaving work to fall victim to Dracula’s needle wasn’t yielding the necessary results. His reply, “well what do you want to happen?” I nearly lost my sh*t.
“What do I want to happen? I want the pregnancy from HELL to be over and I want to move on with my life. My miscarriage was in OCTOBER it’s now FEBRUARY!!! I want to not have to go for blood work every week.”
“Well, what do you want me to do?”
Insert highly annoyed and agitated chuckle, “I have been doing some research online. Given the length of time that has past, is it possible the tissue has calcified and will need to be surgically removed?”
“Yes, it is a possibility. We can check with a saline flush. Do you want to try that?”
In my head I am thinking, “You're the doctor!!! You get paid well into six figures! You tell me!!!!”
What actually came out, “I think we should.”
My appointment was scheduled for that day. Results showed I should have a doctorate and a six figure paycheck. The tissue was still there…just chilling out like it belonged; reeking havoc on my life and making me every bit miserable.
No apology. No explanation of why he hadn’t ordered the saline flush sooner or why he hadn’t even brought it up as an option until I pressed the issue.
I was directed to come in for more bloodwork the following Sunday and depending on the results (which we all knew what the results would be) start birth control in an attempt to retract my uterine lining as to limit the possibility of damage during surgery. Surgery would be in 2 to 3 weeks.
Late Monday morning I received a call letting me know surgery was scheduled for Friday, March 4th at 1:30PM. I was to arrive early for post-op procedures. Schedules were rearranged and my husband and mother made plans to be at the hospital with me.
Finally, the cloak had been removed and the culprit identified. We have a plan and I can see the light at the end of the tunnel. JUST KIDDING!!!
Tuesday morning rolls around and I receive yet another voicemail from the doctors offices, "This is **** calling from the doctors office to confirm your surgery date for Friday, March 18th."
Um...the 18th? That's over a month away?! What happened to Friday, March 4th?
Call the office back...apparently the person who called me the previous day had made a bad judgement call and decided to tell me the date in which the doctor had requested but not yet secured with the hospital. According to the nurse I was currently speaking with "this kind of mistake never happens" and she has no idea why I was told the 4th at 1:30PM. Regardless the 4th was a no go.
I was one wrong word or phrase away from losing my bananas and asked the nurse to have the doctor call me as the 18th was unacceptable and this whole situation has gone on long enough.
Magically, about a half hour later, I received a voicemail from my doctor. They shuffled schedules around and surgery was all set for March 4th. GOOD!!!! My doctor wanted me to call him back as there were some procedural things he wanted to explain or reiterate.
*Shakes head. Deep Sigh*
"Hello doctor, It's Bri, you asked me to return your call?"
"I just wanted to reiterate that surgery needs to take place within 3 to 4 weeks to allow the birth control enough time to be effective. Uterine tissue tends to be very vascular and we don't want to do more damage than good. I'm not trying to postpone or prolong this experience any longer than it has already gone on, I just want you to understand there is a timeline that has to be followed. Ideally your body would have discarded the tissue on its own, clearly that is not the case."
I am sure if he could have seen the look on my face at this point, I would have resembled something that looked like a cross between an angry blow fish and an irate orangutan with an undoubtedly red face.
"I understand there is a timeline that needs to be followed, that is not where my frustration lies. My frustration lies in the fact that my miscarriage took place in October and it is now February and I am still dealing with the loss of this pregnancy. I am frustrated with the fact that had I not pushed the issue last week of repeated blood draws that yielded no useful information, I would be having yet another blood draw this week and probably next week. I am frustrated that it took me pushing back for you to do a 10 minute procedure that showed exactly what was wrong and provided a path for a solution. I am frustrated that this has been going on for so long and the only person who seems to care about getting it taken care of is me even after you told me "we won't let this go on forever" 2 months ago."
"I apologize for the delay and manner in which things have progressed. I did not do your original D&C which has resulted in this situation but we will get it taken care of on the 4th and get you on your way to trying again."
"I realize you did not perform my D&C but you were my aftercare physician and the remaining tissue could have been addressed weeks ago when I started complaining about the lack of change in my HCG levels had you performed a sonogram or saline flush. Thank you for the call back, I will see you on the 4th."
What I have learned from this experience; you are your own advocate. No one cares more about you and your well being than you. I knew weeks ago that something was wrong and I pushed back a little but I never saw my gut feelings through.
All I can do now is wait and hope surgery goes off without any hiccups and things will finally come to a close on this chapter of our life. I know everything happens for a reason and I may look back on this and be thankful for this experience but at this point I am ready to toss a lock onto this diary, throw away the keys and catapult this chapter into a fire.