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.

30 Things About My Illness You May Not Know

This post was originally supposed to be done during Invisible Illness Week (Sept. 10-16). At that time though I hadn't joined the awesome world of online health networking, so...I kind of missed it. However, I think the concept of this post is really interesting. My awesome Fibro-Sister, Untypically Jia, inspired me with her rawness and honesty. I hope to inspire someone else the same way with my own sincere answers to this exercise.

1. The illness(') I live with is/are:
-Fibromyalgia
-PTSD
-Depression
-Anxiety

2. I was diagnosed with it in the year:
Fibro- 2012
PTSD/Depression/Anxiety- 1999

3. But I had symptoms since:
Fibro- 2008
PTSD/Depression/Anxiety- 1992-1998???

4. The biggest adjustment I’ve had to make is:
Acknowledging my physical limits, and accepting my feelings/emotions are valid. 

5. Most people assume:
I'm just a whiner, I'm lying to get out of doing things, I'm always in a bad mood because my "resting" facial expression apparently looks angry...when really I'm just in pain.
 
6. The hardest part about mornings are:
Waking up and getting out of bed. To this day, my Husband still helps me up.

7. My favorite medical TV show is:
House

8. A gadget I couldn’t live without is:
My phone. It keeps track of everything for me.

9. The hardest part about nights are:
Staying awake long enough to get everything done.

10. Each day I take 11-15 pills & vitamins.

11. Regarding alternative treatments I:
Receive chiropractic care as often as possible (depends on $$$), go to support group meetings, do relaxation breathing, and I do yoga/stretching every once in a while.

12. If I had to choose between an invisible illness or visible I would choose:
Having a visible illness would be easier. But I feel like I've been given an invisible one for a reason...I've learned so much from it and it has made me a better person, in spite of the pain.

13. Regarding working and career:
Thankfully I am still able to work full-time. During my diagnosis process though, it was pretty touch and go for a while. I hope to finish my education in the next few years and continue working at this institution.

14. People would be surprised to know:
Recently my husband and I decided to abstain from alcohol consumption. It's been much harder for me than I thought it would be. I didn't realize how much I was using it to cope.

15. The hardest thing to accept about my new reality has been:
I'm no longer this young little thing that can stay up all hours of the night and go out. I have to be responsible. I have to go to bed at my bed time. Otherwise, I jeopardize my career and my future.

16. Something I never thought I could do with my illness that I did was:
Reach people all over the world. Currently I have reached people in Austrailia, Germany, Malta, and the UK.

17. The commercials about my illness:
Are stupid. Except for the fact that they use the word "Fibromyalgia." They do not portray the illness well to the general public. The one that sticks out the most to me is the lady laying on the red couch while all of her friends and family do activities around her in various locations. While we do feel depressed and like we can't get up sometimes, I feel like we could better educate the general populous about the sensory overload we experience and other illness' that sometimes accompany Fibro.

18. Something I really miss doing since I was diagnosed is:
Dancing

19. It was really hard to have to give up:
My previous job.

20. A new hobby I have taken up since my diagnosis is:
Blogging and community outreach

21. If I could have one day of feeling normal again I would:
Go to Disney World. I'd get there as soon as the gates open and I'd see everything in the park until it closed down without being tired. I'd eat all of the food I'm not supposed to eat. I'd ride the rides that would normal land me in bed for a week from being jolted around. And I'd walk around on my feet all day without my legs, knees, feet, or back hurting. It would be perfect.

22. My illness has taught me:
I've learned to cherish my body. I am now more careful of what I put into my body. I make sure to let my body rest and relax when it needs to. Our nerves can only handle so much. We are our body's manager. If we over-work our body and it under-performs, we are to be held responsible.

23. Want to know a secret? One thing people say that gets under my skin is:
You know I can't just choose one.
-Handi-capable. I appreciate your optimism, but it's actually offensive.
-Just try <insert suggestion here>. It'll fix you right up.
-Does it hurt?
-Just walk it off.
-Oh come on, you're such an old fart. You can stay up later for one night.
24. But I love it when people:
-Consider my health and ask if I'm up to doing a task before they just assume.
-Ask me how I'm feeling.
-Read my blog and give me feedback.

25. My favorite motto, scripture, quote that gets me through tough times is:Revelation 21:4
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

26. When someone is diagnosed I’d like to tell them:
This isn't the end. There is life beyond Fibro, and it's a pretty stinking good life too, if you want it to be.

27. Something that has surprised me about living with an illness is:
I am more in touch with my body and my emotions now than I have ever been.

28. The nicest thing someone did for me when I wasn’t feeling well was:
<Insert anything my Husband has ever done for me.> I have been blessed with an amazing man. He goes out of his way every single day to make my life easier and more convenient. He remembers the things I forget due to Fibro Fog. He is most definitely my better half.

29. I’m involved with Invisible Illness Week because:
Well, I actually missed it. But I'm definitely going to be involved next year!

30. The fact that you read this list makes me feel:
Vulnerable, that you know all of these things....things I normally wouldn't share. Yet, I'm thankful for those who have taken the time to learn about Fibromyalgia. I will never be able to convey how much it means to me for you to care not only about me, but the illness itself.

The Breakdown

For the most part, I’ve always experienced some sort of pain in my body. I didn't realize everyone else didn't experience the same thing. I actually thought it was normal. So when the pain duration and intensity began increasing, I tried my best to ignore it and write it off as “the usual” pain in my…well, you pick, it probably hurt. I talked to my mom about it and she chalked it up to my lack of nutrition and rest. I wasn’t treating my body right, so it wasn’t treating me very well in return. From there I tried the diet change. I stayed out less and went to bed earlier. It helped a little, but not enough for me to want to keep up the good habits. 

The turning point for me was when the pain started radiating in my joints. My hands, wrists, elbows, shoulders…places I had never hurt before were beginning to hurt: no, ache. I felt like the last fragile petal of a rose, ready to fall from the stem. Pain medicine didn’t help; sleeping didn’t help (unless it was for more than fifteen hours). It didn’t matter what I did, I hurt everywhere. Adding that in with being on my feet eight plus hours a day in a high stress environment, it finally hit me. I am no longer in control. I could no longer ignore the pain and pretend like it wasn’t there. There might as well have been a big, huge rainbow sign saying “PAY ATTENTION TO ME, OR ELSE!!!” Go ahead and add on a big smiley face too, just for spite. So, I finally broke down and made an appointment with a Primary Care Physician. I wanted an answer. Go to the doctor, get an answer. Easy-peasy. 

False.

After the appointment, I left frustrated, discouraged, and prescription in hand. The doctor continuously cut me off when I tried explaining the pain. She asked questions I didn't know the answer to and then treated me like I was a stupid inconvenience for not being able to answer within five seconds. Needless to say, I got no answer. 

          “Call back in a month if you’re still feeling pain and I’ll refer you to a rheumatologist,” the doctor with terrible bedside manner said.

Ha. I’m always in pain; can we just skip the formalities and go straight to the next step? No. Of course not. So I spend another month taking a prescription three times a day that doesn’t work. In fact, it tears my stomach up. On top of that I’m unable to work a full eight hour shift. My attendance at work has suffered ridiculously due to having trouble even getting out of bed most days. My husband, then fiancé, has to physically pull me up from the bed and hold me until I steady. Only then do I dare walk without assistance to begin my morning regiment: a regiment that used to take a full hour consisting of a shower, blow drying my hair, straightening my hair, and make-up application. Now I do the bare minimum. 

I wash my hair; pull it back in a wet pony tail, then put on a headband to hold back the fly-aways. I find the cleanest sports bra in my drawer; real bras are not an option. The straps cut in and feel like a bruise being taunted by a four year old: 

“*Poke* Does that hurt? *Poke* Does that hurt?” 

Finally I look for the softest t-shirt I can find to put under my uncomfortable polo. Add the dreaded khakis and belt, and the Reeboks that save my feet, and Viola! I’m ready for the day.  I’m not much to look at, but luckily I don’t need to impress anyone. I’ve got my hubby and he loves me anyway.

I counted down the days until I could call my lousy Primary Care Physician and ask for the rheumatology referral. She said the Rheumatologist's office would call me to make the appointment. 

Oh yay, more "hurry up and wait." 

Finally, one day at work I’m laying on an ice pack on the couch in the break room, as I often did on my lunch break. My General Manager is sitting on the couch adjacent to mine, shoving french fries and a burger down his throat. Gross. My phone rings and it’s finally the rheumatologist calling to set my appointment up. 

            “We can get you in on May 15^th, Ms. Weatherford.”

I hate it when they use my last name, whoa what? May 15^th?

“May 15^th…that’s eight weeks from now. I can’t keep missing work. The medication I’m on right now isn’t working and I’m hardly functioning. Can’t you get me in any earlier?” By now my GM is eaves-dropping and not doing a good job at hiding it.

         

              “No ma’am. This is the earliest appointment we have available.”

“Ok, then I guess I’ll take it,” I said with defeat.

I end the call, basically devastated. How on earth am I going to make it another two months? I’ll be fired by then. I look over at my GM, who is now back to shoving fries into his mouth and clearly avoiding any eye contact or conversation. I decide to tell him about the appointment anyway, hoping that he will find some kindness in his heart and have lenience with me. 

Stupid. 

The cycle is rather vicious in the corporate world. If you’re unable to work your normal hours, you must request a Medical Leave of Absence. In order to request an MLA, you must have a diagnosis from a doctor. To have a diagnosis, you have to actually be able to SEE a doctor. All I could do was literally wait it out and hope to dear God I wouldn’t be terminated before I could see the rheumatologist. If I were terminated, not only would I be jobless, I wouldn’t have the insurance to cover seeing the rheumatologist in the first place! 

May 15th couldn't come soon enough.