The Break-Up Conversation

Today my rheumatologist broke up with me. 

Ok, not technically a "break-up" per se, but she basically said she can't do anything else for me since my auto-immune system isn't broken. Now I'm being referred to a Pain Management Clinic(PMC).

I haven't decided whether this is a positive, neutral, or negative thing. I've tried to read up a little on the PMC I'm being referred to, but there isn't much material online about it. It's just part of the hospital I already visit bi-weekly. Maybe I should start keeping track of my miles for tax purposes....*Memo-to-self*

Something Dr. Collins did mention today is that the PMC has access to a wider variation of treatment options such as other medications, topical treatments, and injections (yay...not). As if I'm not already a human pin cushion.

I don't really have anything productive to say...I'm mostly just going in circles inside my head about how much I hate this illness and how this isn't the way I thought I would be living my life. You know the papers you write in high school where they ask, "Where do you want to be in 10yrs?" I can tell you exactly what I DIDN'T write:

"Chronically ill, back and forth on the verge of being disabled, and heart broken over it all."

Don't get me wrong, I have a lot to be thankful for. 10yrs ago I hoped to be married, but I never knew how amazing of a husband God would bestow upon me. He is my rock and the reason I get out of bed every morning. I have a wonderful family and support system back home, and a team of medical professionals who really are trying to make it to where I feel better.

It's just that when I think we've finally found a plan that works, another hole appears in the boat, water shoots out, and we start sinking a little bit more. 

Where's the duct tape when I need it?

Train Wreck

"Train Wreck" is a pet name my chiropractor likes to call me on super special days like today. It makes me feel all warm and fuzzy inside.

Not.

As I lie here in bed on ice packs, missing yet another day of work, I have to wonder if I'm really going to be able to continue working Full Time like a "normal" person, or if I'm going to end up on Disability. The organization I work for right now has allotted me many wonderful blessings. I finally have a Monday-Friday 8:30am-5pm job. I never work on holidays. I get to take a two week, paid winter recess. And on top of it all, I'm finishing my degree for free at a prestigious school. What moron wouldn't just find a way to "make it work"?

The "make it work" solution has eluded me. It's not that I don't want it, which I have been accused of before. I just can't figure it out. My body is this puzzle that I'm constantly battling. It throws a different obstacle at me daily, often times multiple times a day. Just when I think I've got it managed, it throws another wrench in my pain management plan. And right now, I'm not doing a very good job at keeping up with it. 

At this point, I'm researching other solutions that will allow me to make the same, or close to the same amount of money, but where I can have more freedom if I'm having a really bad pain day. I currently hold a position to where if I'm not there, it's a pretty big hassle to find someone to cover me. And don't get me wrong, they have been more than understanding with me. But just a few weeks ago I did an 11 day stint in bed, 9 of those days were working days. Now I'm out again today. I know it looks bad to them, and I know they have a business to run. You put 2 and 2 together.

Employment options that give you more freedom are typically self-run/home-owned businesses or work from home stuff. I've researched work from home jobs extensively, and I'm having a difficult time finding the right fit. As much as I would LOVE to have a home-owned business, it's just not the time right now for Jeremy and I to go down that road. Someday perhaps, but not right now.

Next week I will be meeting with my rheumatologist. I'm having a full Thyroid Panel run and I'm having her test my Adrenal gland. But until then, until I get the results, I'm just stuck. I wake up in the morning and I hurt. I try to be optimistic and say, "Ok. I'll lay here 5 more minutes and maybe I'll feel better." But 5 minutes passes and it isn't better. So I try stretching for a little while. Still not better. So then I think maybe a shower will make it better...but it doesn't. Finally, I come to the realization that it's just not going to get better today. Those are the days that I stay home. Days like today, where I feel stuck and have no clue how to "make it work."

I am definitely a Train Wreck.

< Insert Something Inspirational/Educational >

Hey there fellow Fibro peeps, supporters, readers, and the person who accidentally happened upon this blog and doesn't know how or why they're here.

The last few days I've been searching for inspiration to help me write a new post. This is what I came up with...

....nada/zip/zero/nothing.

So today I'm literally going to word vomit the things on my mind. They may not flow well, and some of it might not even make any sense. Here we go...

My elbows hurt. And my shoulders. I'm sitting with an ice pack on my lower back. I came to work today in spite of having pains shooting down my right hip. Mostly because I missed work last week and two weeks before that. I'm not interested in making it a habit. My body is the most frustrating thing in the world. Jokes are constantly made about how complicated women are, that men (and women) can't ever understand the mood swings, double standards, illogical conclusions, and manipulative actions. My husband is always trying to predict how I will react to things. Any husband does this, I think. It's their job to know their wife well. I feel like I can understand his frustration with me finally. Currently I'm looking at my body and my mind as two separate beings. My mind is constantly trying to predict how my body will react, what consequences I'll have to endure depending on the activities I partake in. If I could understand my body and the repercussions I'd have to endure, I feel like I would HAPPILY walk on egg shells in order to not provoke the pain I'm experiencing right now. Today, right now, I would do anything to not feel like this.

Today is the first day I've come to work here without make-up on. I literally have not done that since I worked at Best Buy. Usually I'd be self-conscious about it. Today, for the first time in a really long time, I truly don't care. I've been asked, "Isn't there something you can take? Like ibuprofen?" 

If I'd felt like it, I would've laughed at that statement. But instead I answered, "Nope. Can't take anything but Tylenol and it doesn't do enough to matter. I took too much ibuprofen and other NSAIDs as a teenager and now my stomach is torn up over it." 

I don't WANT to have to rely on pain meds. I hate taking the amount of medications I take right now. I'm to the point now though where when my body freaks out like this for weeks at a time, I wonder how I am ever going to maintain a career. Or go to school for that matter. I'd be a huge idiot not to take advantage of finishing my bachelors while I work here. Not to mention Jeremy can go back for his...and if I'm here long enough, by the time my kids are of age they can come here. I can't imagine any of that happening. It all seems impossible. I don't know how I'm going to get through the day, let alone having kids in the next few years.

I'm afraid: absolutely terrified that my employers patience/understanding will run out. I'm terrified of going through what I went through at BBY. But it becomes difficult for someone without Chronic Pain to continue believing that yes, in fact, I do STILL hurt. Yes, it's been days/weeks/months, but it hasn't gone away. There isn't a quick, or long-term, "fix" for it. All you can do is learn to maneuver around it. And sometimes, Fibro likes to bring a gun to a knife fight. It isn't fair, but that's the way it works. 

It isn't acceptable to miss work consistently. Disability is difficult to get approved for. Even if I did apply for it, I would be basically consenting to never working again. I would be admitting defeat. And I wouldn't make as much money. Contributing to my marriage financially is important to me. Sometimes I can work. Sometimes I can't. But with Disability, you can't go back and forth from day to day or week to week. You choose Disability, therefore you are Disabled. 

Its not being Disabled that scares me. It's giving up on working. I like to work when I feel alright. I like to help people. I like trading crazy stories with my friends and family about the people I had to deal with throughout the day. 

But some days those same crazy people I deal with can cause me to go into a downward spiral if my nerves get bad enough. 

Nerves bad=Pain=Fatigue=Missing Work=Nerves Bad...etc. 

You get the idea.

I think I'm just going to leave it at that. No conclusion. No closure. Just "here ya go."

My word vomit.

Body vs Mind: The Civil War

I’ve been thinking about this post for quite some time now but I just couldn’t quite figure out how to word everything I wanted to say. Finally, I decided I’m just going to word-vomit it all down on here, do my best to edit said word-vomit, then post it and hope someone besides me understands what I’m trying to say. So, here goes nothin’…

Body vs Mind is like Fibromyalgia’s own Civil War. What I mean by that is, with all of the different aspects that the Body and Mind disagree on in cases of Fibro (or other chronic illness'), it’s like a bunch of separate battles happening all over that get wrapped up into one big war called Fibromyalgia. Make sense? Probably not, but I’ll try to explain.

Battle #1: My Brain says it hurts, but the medical tests say it shouldn’t.

To reference my last post, Fibromyalgia is invisible. When you first go to the doctor and start describing your pain, they’re going to run every test in the book. They’ll be looking for cartilage damage, tendon and ligament damage, auto-immune diseases, vitamin deficiencies, red/white blood cell count, cholesterol, kidney function, liver function…ok you get the point. If you have Fibromyalgia (and not any other prominent issue), all of those tests are going to come back negative/non-conclusive. They will find NOTHING. What will make the biggest difference in your life though is if your doctor has the brains to tell you, “It’s OK,” and that the negative test results are all part of the diagnosis process. You ARE NOT crazy. The pain is REAL. It’s just that all of the initial tests don’t go looking into your Central Nervous System. Even if it did, it’s not like your CNS is holding up a big red flag that says “Oh hey! I know the answer!” The CNS, being the complicated system that it is, does not tend to offer up much in ways of answers when it comes to Fibro, yet. Doctors are still researching to find definitive answers for us, and I have faith that they will.

Battle #2: My Brain thinks I can, but my Body says otherwise.

Sure! Your brain says it would be a great idea to go out clubbing with the girls until 4am. But your body is going to cruelly make you pay for it tomorrow (and probably for the following week.) This battle is one we Fibromites start fighting before we even get diagnosed. It’s the first official “Sneak Attack.” Once being diagnosed, you will gain extra tools in your belt to understand the “enemy.” If you choose to use the tools, you CAN win this particular battle and the enemy (your body) can slowly start becoming your friend once again. It all comes down to Acceptance. If you can accept that your Body is changing (whether you like it or not) and that your mindset must change with it, this battle goes down in your History as being a turning point in the long war that is Fibromyalgia. By listening to your body, you may feel like you are surrendering to it; and in a way you are. But by doing so you will gain the upper-hand and become triumphant once more!

Battle #3: I know I should listen to my doctor and exercise, but my body tells me, “No way, Jose!”

This is a battle I still fight each and every day. Even in my younger years, I associated exercise with pain. It was just a little more bearable back then since I loved marching band and teaching dance was one of my jobs. By now I’m sure you know there is currently no cure for Fibromyalgia, you should also know that there are very few remedies researchers have found that work. One remedy that has proven to work time and time again is exercise. I know; how in the heck should Fibromites be expected to exercise when we are fatigued and hurt all over? Well, here’s how: In terms of Fibro, exercise takes on a new definition with each Fibromite. Just like each person’s pain is different, the amount of activity that can be done differs with each individual. Once again, IT’S OK. This is another one I’ve had a hard time coming to terms with. Just because I used to be able to leap in the air and do the splits, doesn’t mean that in order to exercise I have to throw myself back into an Advanced Ballet class. (Trust me, I tried. It was kind of tragic. Follow the link if you want a good laugh, though.)

I understand that in Battle #2 I told you to listen to your body. Now it’s going to seem like I’m contradicting that very statement. I’m not, though; just consider this a grey area. In the times you feel like you just can’t move, the BEST thing you can do for yourself is to move (in most cases.) Your worst enemies in this battle are both your Mind AND Body. How? By being in pain, your Body is going to discourage you from feeling like you can do one of the two things researchers have found helps everyone with Fibro: EXERCISE!!! I’m not talking about running a marathon or lifting weights. If you know me at all, I have proclaimed running is against my religion since the 7th grade.

I have learned from my support group meetings that some of us walk with canes, some have to wear back and leg braces, and some of us have other illness’ that accompany our Fibro. But when we do our movement exercises as a group, everyone can participate. We do some of our stretching while sitting in chairs, some standing up, and some sitting on the floor. Just doing a small amount of movement allows blood to flow through our achy muscles and tired joints. It is the movement and energy flowing through our body that allows us to flush the pain/toxins out of the nerves. What happens when we get tired and we’re hurting? We lie down or sit down, often for long periods of time. Don’t get me wrong, I know resting is a huge part of feeling better; but if we only rest and never move, the energy and toxins in our nerves/muscles have nowhere to go. Instead, they stay put and muster, resulting in even more pain.

Battle #4: Mind over Matter

I can confidently say this is a touchy phrase for all of us. At some point in time, I'm sure some idiot, (pardon my honesty), has said to you, "You can control the pain. It's just mind over matter!"...or something along those lines. And as we all know, if we could simply will the pain away, we would have a LONG time ago. While we don't have control over the fact we have been given this chronic illness burden to bear, we do have control over some of the things that make our pain worse. I feel that its extremely important for any person with a chronic illness to take responsibility over the things they can control. We are our own advocates when it comes to our health, and when the effort is put forth, there are ways to make our quality of life the best it can be in spite of chronic illness. It is OUR responsibility to do that though. Not our doctors, not our caregivers, spouses, not even the medication. While we would love to depend 100% on all of those people/things, the only thing we can truly depend on is ourselves. No one will ever know our bodies like we do. If we listen close enough, our bodies tell us exactly what we need. However, until we've accepted our new friend Fibro, for better or worse, we won't be in the right head space to be able to utilize all of the tools and hints our body gives us to make our lives better. We most work with the universe, not against it. 

In my own personal struggle with Fibromyalgia, I have triumphed over Battles #1 and #2 (for the most part). My biggest struggle remains Battle #3. To this day, I have the hardest time finding the motivation to get up off my bum and stretch or just simply move around. The fact that I am able to do so little compared to what I used to be able to do often discourages me. I feel like the little bit I am able to do is insignificant. THIS IS WRONG. I am wrong. (Go ahead and mark it down in your calendars folks.) The truth of the matter is, when it comes to Fibromyalgia, every little thing helps. I feel like Battle #4 is a daily battle for me. Some days I want to lie down and blame the whole world. But on my good days, I get up, take responsibility for myself, and I fight like hell.

<No matter which battle you're currently in, please feel free to reach out to me for support. If you’re discouraged about movement/stretching/exercise or if you're interested in learning relaxation techniques, I would be happy to make recommendations that are simple based on what you are able to do!>

Me + Universe = :)

Now that I have finally come to terms with the fact that my life is going to change whether I like it or not, I have decided to make the most of it. My life is not over. In fact, a new chapter is just beginning. Yes I know, how cliche of me. But seriously, life as I know it is changing, and it’s changing NOW. Enough of the kicking and screaming, toddler temper tantrum.

Something my BFF Maggie introduced to me has started to come in handy now that I’ve decided to work with the universe, instead of against it. One of the most important things any person with a chronic illness can do is count their spoons. I will assume most of you do not know what I mean. So, before we continue, go read this article.

No seriously, go read it. It’s brilliant. Also, it will make this next part make much more sense.

 <WAITING>

Done? Good. Now we can continue.

So, counting my spoons; this is something I now do every day. And it works. I have never been more in touch with the needs of my body than I am right now in my life. I am slowly learning things that work, and learning the things that don’t work faster. The best way for me to function at my fullest capacity is to be true to my routine. 

I wake up at the same time every morning during the week for work. After I wake up I get straight in the shower. Once I’m done doing all of the showery-business, I turn the water on almost as hot as it will go and begin my stretching routine. I stretch my hamstrings, my calves, then my arms and rib cage. Used to, I would rarely wear make-up or fix my hair for work. Now I make it a point to put my make-up on and fix my hair every day. It really does make a person feel better about themselves, even if they’re having a cruddy day. After I’m done getting ready, I go downstairs and make my coffee. While it’s brewing I eat my bowl of cereal and prepare my lunch. Once the coffee is done, I’m out the door and off to fight traffic on my way to work. I call my mom while I’m driving to have our morning chat. It really is the only time we get to talk in peace. Some days we talk about how crappy we feel, while other days we may just talk about the weather. 

Once I’m at work I get settled into my desk and take my morning medication with my coffee. At 10:30am Miss Ellen lets me have my break. I fill my eco-friendly plastic cup with Crystal-Light lemonade and drink only that for the rest of the day. I eat lunch from one to two, followed by my afternoon medication. Then at five I’m out the door to fight rush hour all the way home. 

When I get home I put my most comfy clothes on and start in on dinner. Sometimes I have to clean the kitchen first. This costs more spoons than I usually have prepared for the night. If I’m lucky though, the husband has cleaned it before I get home from work. After dinner, it’s dishes. By this time it’s about seven-thirty. I’m usually already out of spoons, but every once in a while I can muster up a few more for a fun activity or socializing. If not, I still have enough time to catch up on the DVR or watch whatever football game is on. This is also my ice-pack ritual time. 

Followed by more stretching, then to bed I go at in between nine-thirty and ten. Night time medicine, heating pack for twenty minutes, then I die for eight and a half hours or so. Rinse and repeat.

This is my life now. And it’s OK. I bring an ice pack with me to work when my back is hurting. Sometimes I use Bengay Cool Therapy. The eucalyptus scent vanishes, so it’s friendlier for public situations. When I first started at my current work place, one of my co-workers came into the bathroom one day when I was applying the Cool Therapy gel to my shoulder.

             

         “Oh did you hurt your shoulder?”

*Sigh* Which response should I give this time? Probably the short one.

“Yeah. I get muscle spasms in my shoulders a lot.” Good. That was short enough.

           

          “Oh no, that’s too bad!”

If only you knew…

            

          “You know what my sister’s friend does when she gets spasms?”

Oh no, here it goes…

            “Her friend used to be a flight attendant. She’d get leg spasms real bad from being on her feet all day. She’d just drink some club soda and that’d fix her right up! You should try it.”

C’mon lady. You’ve got to be kidding me…

“I will have to try that sometime.  I appreciate the recommendation.” I say instead with a meek smile.

This is just one of the many dreaded conversations I often have with people. It seems that no matter how little (or lot) I tell someone, they’ve always got “the fix” for it. To quote Ricky Buchanan in her infamous “Open Letter to Those Without Invisible Disability or Chronic Illness,”

“If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.”

Read the full letter here.

Now, the incident in the bathroom with my co-worker is sort of an exception. I was not honest with her about my Fibro. So to be fair, she did not know any better. She really was just trying to help, and I would accept that any day over rudeness or mockery. (Yes, it does happen.) However, that exact instance is why I have decided to be open and honest about my chronic syndrome. If someone doesn’t know, how can I expect them to react properly?

“React properly.” Now, THAT is an interesting concept. How does one react “properly” to finding out a friend/co-worker/family member has a chronic illness. Well,  Maggie does a WONDERFUL job in her blog, Crohn’s Chronicles, explaining her view on how to talk to a friend with a disability. Did I mention she’s brilliant? She really is. I’ll reiterate once more, I probably wouldn’t even be writing this if it wasn’t for her strength and determination to educate the world about her own chronic disease. 

Tune in next time for my own DO's and DON'Ts section. :)