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?
Showing posts with label Support. Show all posts
Showing posts with label Support. Show all posts
Thursday, September 26, 2013
Thursday, August 22, 2013
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.
Friday, May 31, 2013
< 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.
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.
Thursday, May 23, 2013
When people ask, "How are you feeling?", can they handle the truth?
When a person asks someone with chronic illness, "How are you feeling?", most of the time the inquirer is not prepared for the answer. Here's the bottom line:
Chronic Illness is uncomfortable to talk about for people who have never experienced it. I've already done a post on "My Do's and Don'ts of Fibro Talk".
Today though, we're talking specifically about the dreaded question, "How are you feeling?"
Why is that question "dreaded", you ask? Let me explain, from my personal perspective, at least.
When someone asks me how I'm feeling, I have two options:
1) I can give them the answer most people want to hear: "I'm fine." This relieves any responsibility of the inquirer having to listen, understand, or sympathize. Yet, it allows them to feel good about themselves for asking in the first place. It ends the conversation quickly and allows everyone to go back to their business. Done and done.
Yes. It sounds callous. But our society has resorted to empty greetings in passing because most people are too busy/distracted to really listen. It doesn't make them a bad person. It just makes them a typical human. When I answer like this and I'm not really "fine", I feel like I'm cheating myself and I hate not being truthful. Which leads me to my second option...
2) I can tell the inquirer the truth. Some days, the truth is "I'm fine." Most of the time, however, people inquire when they notice you aren't feeling/looking well. Personally, I feel guilty or bothersome when I answer truthfully. People who don't live with chronic pain are able to be more carefree and positive. I'm not saying those with chronic illness are negative, but a huge part of our survival is being real with ourselves. And just because we're acknowledging we aren't feeling well, that doesn't mean negativity for us. It's just another part of our typical day. We rarely get "carefree days," if ever. I tend to feel like a Debbie Downer though when I'm honest with people about my pain levels because it isn't the "typical response" to the question. I tend to be emotional when I'm in pain anyway. So for me, the reaction from the inquirer can really affect the way I'm feeling about myself.
Being honest with someone about my pain levels is a very intimate, vulnerable thing for me. I don't like to admit my pain often. The less I talk about it, especially when its really bad, the less over-whelmed I get. I choose very carefully who I talk to about my pain and struggles. A statement I made in my "Do's and Don'ts" post is to please not handle me with kid gloves. If I openly talk to you about my pain, I'm not expecting you to fall all over me with sympathy. In fact, for those who know me, I tend to approach things with humor. Even though this illness is a very serious thing in my life, sometimes taking the seriousness out of it helps me to cope.
The reality of it is, I'm reminded daily that I can't live my life like a normal 25yr old newlywed. So to cope, I like to say things like, "I'm going to cut off my elbow", or, "I really need a back transplant", or, "I'm going to punch my immune system in the face." Granted most of the time my friends and husband reply with, "I'm going to have to advise against that." But they understand. That's what makes me feel better.
However, in the rare times I am serious when I share how I'm feeling, I know it can be awkward for the person inquiring. What do you say to someone who has a condition that has no cure? I've already gone over what NOT to say. If you are ever in need of an appropriate response, here are some that could help:
"I'm sorry you're hurting. I'll pray for you."
"That really sucks man. Hang in there."
"I'm sorry to hear that. I hope you feel better."
However you decide to reply, remember to be GENUINE. We can spot fakes a mile away.
An example that actually happened today that is NOT an acceptable response (and a great example of Option #1's reaction) is this:
Inquirer: How are you feeling today?
Me: Thanks
for asking… My back and hands are still really bothering me. My chiropractor
told me I was a “train wreck” yesterday…and I do have to say, I feel like a
train ran over me a few times. I think it’s just the fluctuation in weather.
I’m hoping to be feeling better by this weekend. I’ve got so much to do with
the church event on Saturday.
Inquirer: Great. Glad to hear you're feeling better.
I'll pause so you can process for a moment.....
Yes. That actually happened. And this is why I try to choose carefully who I am honest with. Clearly this is a person I should have replied to with, "I'm fine." They weren't really interested in the answer.
My advice today is PLEASE don't be that person. If you're going to ask, be prepared that you may not get a quick and easy response. Our lives aren't quick and easy. Everything is complicated, and once in a while, explaining that to someone makes us feel a little better. If you are chosen to be that person we share details with, try to be a good listener. If you don't know what to say, its OK. Just don't respond like the person above did. A response that is inappropriate based on the information given is not only frustrating, its down right hurtful.
This post goes out to all of my fellow Chronic peeps that are afraid to answer with the truth.
Monday, May 20, 2013
It's Been a While...
Hey there!
I know I've been MIA via Blogger for a while. My (almost) 6 month "sabbatical" has been necessary though. Here are some things that have happened since my last post:
I know I've been MIA via Blogger for a while. My (almost) 6 month "sabbatical" has been necessary though. Here are some things that have happened since my last post:
- Tulane University offered me a permanent position in their Human Resources department after I temped there for 3 months. I accepted, of course :)
- Lucy, (our dog), had to have two small malignant tumors removed from her belly. She has since developed two more and we are trying to decide whether to do surgery again or not. (It costs a lot of money that we don't exactly have right now...)
- I totaled my car on a pot hole on my street. Yes, a pot hole. No, I wasn't going fast. Yes, New Orleans streets are that bad. No, the city is not going to reimburse me (unless I get in line with the thousands of other people who receive less than $100 a few years after their claim. Not worth the hassle.) The pot hole was unmarked and it was dark outside. It caught the front end of my car, cracked the center of the frame and smashed one of the corners to where it looked like "a smashed soda can" according to the mechanic. The airbag deployed. Of course this caused my already existing whiplash to flare, and I sustained chemical burns on my arm from the airbag. Overall, no big deal. It just set back my recovery/maintenance on my back problems. Oh and we were less than a year away from having the car paid off. Yay...
- We bought a new-ish car. We're SUPER happy with it! We bought a 2011 Hyundai Sonata. The person who had it before us hardly drove it at all. We bought it with 12k miles on it. The former owner also put ALL of the bells and whistles on it, so we lucked out there too!
- July 1st, I go back to school. I will be attending at Tulane (obviously). I am going to finish my Bachelor of Arts degree just to get it under my belt. Then I might go for my MBA...but we'll have to see when that time comes.
And that pretty much sums up the last 6 months as far as big events go. My pain has been up and down. I've also re-entered therapy, as highly suggested by my rheumatologist. She referred me to an awesome LCSW whose specialty is in Dialectical Behavioral Therapy (DBT). (I'll be doing a post specifically on DBT later to explain my personal experience with this therapeutic technique.) So I guess I can officially add Dr. Stavros to Baylee's Fibro Team. I've been going consistently for a few months now and it's most certainly helped me with day-to-day struggles and stressors. I don't always look forward to going, but I know it's helping. I've never been good at staying consistent with these things. You could call me a therapist-hopper I suppose. But, with the support of my hubby, I will continue to go in spite of the dread I experience before each appointment. Once I get there and after the appointment has concluded, I'm always glad I went.
Last, but most certainly not least, I'm going to church again. Jeremy and I were blessed to find a church just a few blocks from where we live. It's clear to me that this plan has been in place for a long time. We were attending off and on before Christmas, but I was having a problem staying consistent with going. (Are you seeing a pattern here?) In fact, this is the first time I've gone to church consistently since I lived at home in High School. We've met some wonderful, supportive people who I consider to be family. Without a doubt, Bethel Missionary Baptist Church is a huge part of my Fibro Team now.
So there's your update on the ongoing craziness in my life. I hope to be posting more frequently now that I'm more adjusted to my new routine. Thanks to those who've continued checking in on me!
Thursday, December 13, 2012
Insurance Companies are Communists
There is not nice way to say this:
My insurance company sucks. I have had nothing but trouble over the past two years since I started seeking treatment/diagnosis/etc. First it was my Chiropractor. God Bless him for helping us in spite of the crap my insurance pulled. I called them over and over and fought with them on the wording in the plan description. I consulted other people who had more experience with insurance lingo. Yet, the answer they gave me was, "It depends on how its interpreted."
SERIOUSLY!?! So what they were really saying was, "Well, today I feel like interpreting it so it says I'm going to leave you hanging with $1000's of bills even though we said we'd cover it at first."
Yep. Super awesome.
When I got hooked up with my Rheumatologist, I thought things were going alright. We had a very clear expectation of how much of the quarterly visits would be covered, plus all of the tests/x-rays/prescriptions that would be required during my diagnosis period. It still cost us a bit of money, but we made it work. We have finally gotten into a rhythm with my doctors visits and prescriptions...my pain management plan is working (mostly), and I feel better than I've felt in a long while. HOORAY! This is the ultimate goal of any chronic pain survivor!
Well go ahead and just smash that little happy bubble. A few days ago I received notification that as of January 1st, my insurance company is no longer going to cover my Cymbalta. For those of you who aren't as familiar with all of the different meds used to manage Fibro, Cymbalta is in a class of medications called selective SNRIs (serotonin and norepinephrine reuptake inhibitors). It is used to treat Depression, Anxiety, pain from Fibromyalgia, Chronic Low Back Pain, Osteoarthritis pain, and nerve pain from Diabetes.
Cymbalta works differently for everyone, but for me personally it has been an AMAZING help. I have been on several different anti-depressants throughout my life, and from a psychiatric standpoint, Cymbalta has worked the best. (My husband and mother will attest to this too!)
Some of you may be thinking, "Why don't you just ask for the generic?" or "Why don't you just switch to something else?"
It isn't that easy. Cymbalta has no generic available. It is extremely expensive. WITH my insurance, I was paying close to $50 for a 30day supply. WITHOUT my insurance, it will now be impossible for us to afford it.
How much is it without insurance? <Drumroll>
$220 for a 30day supply. (For context, that's more than my car payment.)
Needless to say, I'm going to have to change meds. Again.
Let me tell you, transitioning from one anti-depressant to another is NOT a happy fun time. You have to be weened off of one completely before starting the new one. For me, my sensory overload gets put on over-drive, my (emotional) nerves freak out, and in general, I am just NOT fun to be around. High-strung and crazy is an under-statement. Or at least that's how I feel like I am during the transition.
So....I'm extremely fearful of the transition...and I'm especially fearful that whatever medication I get put on will not work as well as the Cymbalta does.
So there you have it. Insurance Companies are Communists.
My insurance company sucks. I have had nothing but trouble over the past two years since I started seeking treatment/diagnosis/etc. First it was my Chiropractor. God Bless him for helping us in spite of the crap my insurance pulled. I called them over and over and fought with them on the wording in the plan description. I consulted other people who had more experience with insurance lingo. Yet, the answer they gave me was, "It depends on how its interpreted."
SERIOUSLY!?! So what they were really saying was, "Well, today I feel like interpreting it so it says I'm going to leave you hanging with $1000's of bills even though we said we'd cover it at first."
Yep. Super awesome.
When I got hooked up with my Rheumatologist, I thought things were going alright. We had a very clear expectation of how much of the quarterly visits would be covered, plus all of the tests/x-rays/prescriptions that would be required during my diagnosis period. It still cost us a bit of money, but we made it work. We have finally gotten into a rhythm with my doctors visits and prescriptions...my pain management plan is working (mostly), and I feel better than I've felt in a long while. HOORAY! This is the ultimate goal of any chronic pain survivor!
Well go ahead and just smash that little happy bubble. A few days ago I received notification that as of January 1st, my insurance company is no longer going to cover my Cymbalta. For those of you who aren't as familiar with all of the different meds used to manage Fibro, Cymbalta is in a class of medications called selective SNRIs (serotonin and norepinephrine reuptake inhibitors). It is used to treat Depression, Anxiety, pain from Fibromyalgia, Chronic Low Back Pain, Osteoarthritis pain, and nerve pain from Diabetes.
Cymbalta works differently for everyone, but for me personally it has been an AMAZING help. I have been on several different anti-depressants throughout my life, and from a psychiatric standpoint, Cymbalta has worked the best. (My husband and mother will attest to this too!)
Some of you may be thinking, "Why don't you just ask for the generic?" or "Why don't you just switch to something else?"
It isn't that easy. Cymbalta has no generic available. It is extremely expensive. WITH my insurance, I was paying close to $50 for a 30day supply. WITHOUT my insurance, it will now be impossible for us to afford it.
How much is it without insurance? <Drumroll>
$220 for a 30day supply. (For context, that's more than my car payment.)
Needless to say, I'm going to have to change meds. Again.
Let me tell you, transitioning from one anti-depressant to another is NOT a happy fun time. You have to be weened off of one completely before starting the new one. For me, my sensory overload gets put on over-drive, my (emotional) nerves freak out, and in general, I am just NOT fun to be around. High-strung and crazy is an under-statement. Or at least that's how I feel like I am during the transition.
So....I'm extremely fearful of the transition...and I'm especially fearful that whatever medication I get put on will not work as well as the Cymbalta does.
So there you have it. Insurance Companies are Communists.
Tuesday, December 4, 2012
Update
Hello All!
Sorry I've been MIA for the past week. One of the many circumstances of picking and choosing where to spend my energy... my other responsibilities won. But I'm back with you now! This past week was insane. I'm starting to realize I may have, once again, over-extended myself by committing to too much. BUT, I can fix it. I think.
Currently I'm committed to working on 3 websites, in addition to this blog. Luckily all of that can be done while sitting at a computer, which isn't too physically demanding. It's just time consuming and brain draining at times. I know all my fellow bloggers can most certainly relate. In addition, to the 3 websites, Joy and I are currently planning Faith, Hope, and Fibro's 3yr Anniversary in February, we have our weekly group meetings, I'm planning (and executing) Christmas shopping for 26 people, wrapping said gifts for 26 people, then there is rehearsal on Wednesday nights at church for Sunday singing, Bible Study after rehearsal, Church on Sunday, and I'm back to working 40hrs a week M-F.
Yes. I'm insane. However, I'm not complaining about any of it, please don't misunderstand. I am HAPPY to be involved with such wonderful people and events. And I am EXTREMELY thankful for my job. In fact, this job has been such a HUGE blessing to Jeremy and I. 6 months ago, I was basically bed-ridden and on the verge of losing my job. This is a HUGE improvement. The most important thing for me is to find the "happy medium," though. So far, I'm doing much better at pacing myself. Some may see it as procrastination, (which I also do), but in this case I'm just making sure I'm taking care of myself a midst all of the responsibility. There's no need for me to land myself in a mess of pain, which will inevitably turn into resentment, during the holidays.
Historically speaking, Christmas has been a really hard time for me. This year is my first Christmas as Mrs. Baylee Bass, and I am doing EVERYTHING I can to make sure it's one of the best Christmas' in my life in spite of the fact that not all circumstances are ideal.
Saturday, November 24, 2012
Have a Holly, Jolly, Fibro Holiday!
I'm hoping you all had a nice, relaxing Thanksgiving with family and friends. A trend I've noticed with those suffering from Fibromyalgia is, we all tend to be perfectionists, over-achievers, a bit (or a lot) OCD, and extremely driven. As someone without Fibro could imagine, having such an A-Type personality make its all the more frustrating when we can't be The Hostess with the Mostess, make every side dish and dessert in our cookbooks, and feed the entire neighborhood. In other words, we like to over-extend ourselves. We were mostly likely this way before we were diagnosed with Fibromyalgia. And now, we feel even more repercussions and find it harder to bounce back.
As great as it may feel to be told how great your great-grandmother's biscuits came out, or how easy you make the perfect Turkey look, lets be honest, it doesn't feel good enough to over come all of the pain and fatigue you get to deal with for the next few weeks....and just to do it all again for Christmas?
STOP THE INSANITY!!!!
There are things we can do to keep ourselves from suffering through the holidays. Things we can do that might even allow us to ENJOY the holidays.
"I already enjoy the holidays," you say.
Well, you can't tell me you enjoy being bed-ridden after making your perfect feast, just so everything can be perfect, in your mind, for that one day.
"It's what my friends/family expect from me," you say.
Let me explain something to you. Your friends and family will not love you any less if you ask for help. They will not love you any less if you relinquish some of the responsibilities. They most certainly will not love you any less if you ask to have dinner at someone else's house this year. But if you demand to be the only one that cooks, and demand the get together be at your house every year because it's the most central location (or whatever reason you use), they will almost always let you do all the work.
In order to relinquish those responsibilities though, you've got to be honest with yourself first. What are you able to do without over-extending yourself? What shortcuts can you take that really, (be honest), won't make that big of a difference?
We aren't just talking about cooking here. Let's talk about cleaning, eating, shopping, wrapping gifts, and something most people enjoy with holiday celebrations, alcohol.
CLEANING
If you do end up being the one having the holiday get-together at your house, instead of cleaning the entire house from top to bottom, clean the areas that will be used, and shut the doors to the "off-limit" areas. No one has to know you haven't vacuumed your guest bedroom closet. No one will honestly care :)
FOOD
If you've done your research about Fibro, you know there are certain foods that make us feel worse, and some make us feel better. Do yourself a favor, don't eat the ones that are going to make you feel like crap. And if you do get the urge to consume every sugary treat your Aunt Sally made, maybe try to do it in small portions. Remember, just because you're on Holiday, it doesn't mean your Fibro is too. Also, if you have grandkids, nieces, or nephews, this is a great time to teach them how to make some of the family recipes! Let them do the hard work while you sit back (comfortably) and supervise.
SHOPPING
Black Friday is already over with, but there is still one day left of the weekend sale, then of course Cyber Monday. Not to mention all of the other amazing sales you'll see over the next few weeks. Whether you have 20 people to buy for, or only 2, shopping is stressful. If you haven't already, I recommend looking online at your favorite stores before going into them. Many websites let you check in-store availability before you make the trip to the crowded shopping center. If the store has it in stock, many will let you purchase your product online and pick it up in the store. If they don't have it in stock, then you can go ahead and take advantage of purchasing it online and having it shipped directly to your home! No trips to the mall or fighting crowds are necessary! Seriously, take advantage of the awesomeness that is Technology.
GIFT WRAPPING
Not only is this a time consuming task, it can often times be a physically draining task. Do you have grandkids, nieces, nephews, neighbors with kids? Pay them a nickel for every gift they wrap! Not only will they be learning the value of working for their money, your pocket book won't suffer from paying some expensive service in the mall to wrap your gifts for you! (Obviously you can pay them a little more if they're old enough to know the value of a Nickel these days haha). The gifts may not be wrapped perfectly, but they'll have charm and it will be a story to tell your guests that will make them go "Awww!!!"
ALCOHOL
As many of you know, my husband and I have recently decided to no longer drink alcohol. This was our personal choice based on how it was affecting our lives (and mostly interfering with my medication.) All of us can admit, drinking with friends at Holiday parties is fun, but it's not usually worth it for how crappy we feel the next few days. No, I'm not talking about a hangover. I'm talking simply about how alcohol interferes with our medications. Many of us are on anti-depressants (Cymbalta being the most common). Those of us who have been taking anti-depressants for some time know that missing a dose is BAD BAD BAD. Well, drinking alcohol is almost the same as missing a dose. You might as well be flushing those pills down the toilet (and they are NOT cheap!) So, instead of drinking the spiked eggnog, champagne, or hot-totti, perhaps you can enjoy some sparkling white grape juice, or hot cider instead.
Hopefully I've been able to give some of you a few ideas on how to make your Holidays a little more doable. I know most of this is easier said than done. I'm a control freak, I'll be the first to admit it. But I've learned not to sweat the small stuff (most of the time haha.) The most important thing is to enjoy and cherish the time with your loved ones. Being able to do that in the least amount of pain and stress is what we dream of, right?
Monday, November 19, 2012
The Process of Acceptance
Yesterday I made 5 weeks sober.
"The only solution is to let go of who you once were and try to embrace the person you are today."
This is one of the many statements I wrote down when I first started brainstorming for my blog. It was followed by the questions,
"Who did I used to be?" and "Who am I now?"
To be honest, I'm not even sure I know the answers to those questions. But I'm going to try my best to answer them now...so bare with me here. It might be a little rough.
Who I used to be: Emotionally reactive, whether it be happy, sad, frustrated, or down right angry. My emotions always led the way. There was no hiding it. Some people referred to me as "high strung." I can't say that I would disagree. I overloaded my plate ALL of the time. I wanted to do everything for everyone. I was completely and totally insecure about everything. When I say everything, I mean down to every. word. that. came. out. of. my. mouth. Everyone who was nice to me, I assumed they were just "humoring" me. Even though I was successful with my job, I required confirmation from my boss or other peers to feel validated that I really was doing well. In fact, I required validation of my feelings about most anything.
Constantly I felt guilty because there was always something wrong with me. When someone would ask what was wrong or if I was in a bad mood, I'd normally lie and just say I was tired. I felt like a hypochondriac. I didn't understand why, at the mere age of 24, I felt so bad all of the time. I was destructive. Emotionally and physically. I'd literally hate on myself all of the time. I hated that I gained weight. I gained enough to where I decided I'd never lose it. It would be impossible. I hated that I was socially awkward, when all I wanted was to fit in (this stems back all the way to grade school.) I hated that I couldn't just "get myself together" and be "fine." Did I mention that I hated there was always something wrong with me?
Physically I'd destroy myself by staying up too late, not sleeping enough, eating food that only further displeased my already messed up digestive system, and of course alcohol. Lots and lots of alcohol. If you're familiar at all with the show How I Met Your Mother, you'll understand when I say every time I drank, my mindset was, "Challenge Accepted." How much could I drink and manage to still stumble up the stairs to my bedroom. Or not. A few times Iallowed relied on Jeremy to help me. The next morning I wouldn't remember things that happened the night before (which is bad since I don't remember lots of things when I'm sober either.) I hated myself for drinking, so I'd drink more to not feel so bad about hating myself. Yes I know, that doesn't make sense. But the mindset of someone with an alcohol issue usually doesn't make sense. I never felt like doing my make-up or hair in the morning, so I'd say I didn't care. But then I'd be self-conscious every day at work and feel ugly. Even though I had some really interesting and nice accomplishments, none of it really seemed to be that big of a deal to me. To sum it up, I hated myself and assumed no one really liked me either.
Who I am now: I'm still emotionally reactive, but I'm getting better at controlling it in certain situations. I've also accepted that my emotions make me who I am. I also have made it a point to remove myself from situations that I know will only increase my stress. (Stress is the easiest way to start a flare, for me at least.) I try my best to only associate myself with people who impact my life positively. I try to limit the things I commit myself to. I realize I can't fix everything for everyone. I try my best not to dwell on everything, especially the things I have no control over. My awesome friend Kalli has helped me a ton by helping me identify the things I can control, and quantify if the result will be "the end of the world," or what the worst case scenario really is. (Usually it isn't nearly as bad as I make it out to be.)
I lost 30lbs before my wedding. By doing this, I realize it isn't impossible. I have put back on a bit of the weight I lost, but I don't hate myself. I'm not that little 130lb thing I used to be (and probably never will be again), but I have learned to dress myself appropriately where I can still be comfortable in my own body. And most of all, I have realized and accepted that my husband didn't fall in love with 130lb little ol' me. He didn't even know me then. He fell in love with the heavier, curvier me. And I feel secure in that. I've worked through a lot of the insecurities regarding my friends and the feelings of being "just humored." I learned to accept that its quite possible there are people on this planet that sincerely enjoy being around me. (Gasp!)
When I'm asked how I feel, I'm honest, but I've learned how to phrase things in different ways to where I don't constantly sound like the Debbie-Downer I used to hate. Instead, when I'm asked how I'm doing I choose to focus on the good things going on in my life, thus giving me a positive answer. It isn't a lie to say, "I'm doing well." I have a lot of really great things going on, and I'm learning to cherish them as they are. I've also stepped out of the bitterness and started asking how other people are doing. I know that may sound extremely selfish, but used to I would never ask, "How was your weekend?" or other variations. Frankly, I didn't want to know because I knew it would be better than mine, because mine inevitably sucked. I'm getting better at what I like to refer as, "The Social Contract." I also realized that I do not have to drink alcohol to comply with, "The Social Contract." I do not have to drink alcohol at all for anything. So I don't. It's hard, especially at get-together's with friends and everyone is having wine or a martini. But my husband is encouraging, and so far I've done ok.
Most of all, I've begun to accept that I am enough. I do have times where I fall down the rabbit-hole of doom and despair, but for the most part I feel good about myself. I'm involved in an amazing support group, I get along with people at work, I'm confident my boss likes me, and I'm finally back at church. In spite of my pain and in the moments of sadness when I get frustrated that I even have to deal with this illness, I also know that God would not have given it to me unless I could handle it. This was a wake-up call for me. The moment I realized I had no control over my body, and never had, I was humbled to the grace of God and reminded that He has had control all along, regardless of my attempts to ignore Him. I was also reminded that I don't have to go this alone. My hope is only that I can continue on the right path and to lean on God when I need strength.
So it seems that letting go of the old me would be easy since the old me didn't seem to pleasant...but it was hard. And I still hold on to bits and pieces of the old me. I'm still cynical about most things, but I'm much more open to positivity than I was before. I have chosen to be Happy.
"The only solution is to let go of who you once were and try to embrace the person you are today."
This is one of the many statements I wrote down when I first started brainstorming for my blog. It was followed by the questions,
"Who did I used to be?" and "Who am I now?"
To be honest, I'm not even sure I know the answers to those questions. But I'm going to try my best to answer them now...so bare with me here. It might be a little rough.
Who I used to be: Emotionally reactive, whether it be happy, sad, frustrated, or down right angry. My emotions always led the way. There was no hiding it. Some people referred to me as "high strung." I can't say that I would disagree. I overloaded my plate ALL of the time. I wanted to do everything for everyone. I was completely and totally insecure about everything. When I say everything, I mean down to every. word. that. came. out. of. my. mouth. Everyone who was nice to me, I assumed they were just "humoring" me. Even though I was successful with my job, I required confirmation from my boss or other peers to feel validated that I really was doing well. In fact, I required validation of my feelings about most anything.
Constantly I felt guilty because there was always something wrong with me. When someone would ask what was wrong or if I was in a bad mood, I'd normally lie and just say I was tired. I felt like a hypochondriac. I didn't understand why, at the mere age of 24, I felt so bad all of the time. I was destructive. Emotionally and physically. I'd literally hate on myself all of the time. I hated that I gained weight. I gained enough to where I decided I'd never lose it. It would be impossible. I hated that I was socially awkward, when all I wanted was to fit in (this stems back all the way to grade school.) I hated that I couldn't just "get myself together" and be "fine." Did I mention that I hated there was always something wrong with me?
Physically I'd destroy myself by staying up too late, not sleeping enough, eating food that only further displeased my already messed up digestive system, and of course alcohol. Lots and lots of alcohol. If you're familiar at all with the show How I Met Your Mother, you'll understand when I say every time I drank, my mindset was, "Challenge Accepted." How much could I drink and manage to still stumble up the stairs to my bedroom. Or not. A few times I
Who I am now: I'm still emotionally reactive, but I'm getting better at controlling it in certain situations. I've also accepted that my emotions make me who I am. I also have made it a point to remove myself from situations that I know will only increase my stress. (Stress is the easiest way to start a flare, for me at least.) I try my best to only associate myself with people who impact my life positively. I try to limit the things I commit myself to. I realize I can't fix everything for everyone. I try my best not to dwell on everything, especially the things I have no control over. My awesome friend Kalli has helped me a ton by helping me identify the things I can control, and quantify if the result will be "the end of the world," or what the worst case scenario really is. (Usually it isn't nearly as bad as I make it out to be.)
I lost 30lbs before my wedding. By doing this, I realize it isn't impossible. I have put back on a bit of the weight I lost, but I don't hate myself. I'm not that little 130lb thing I used to be (and probably never will be again), but I have learned to dress myself appropriately where I can still be comfortable in my own body. And most of all, I have realized and accepted that my husband didn't fall in love with 130lb little ol' me. He didn't even know me then. He fell in love with the heavier, curvier me. And I feel secure in that. I've worked through a lot of the insecurities regarding my friends and the feelings of being "just humored." I learned to accept that its quite possible there are people on this planet that sincerely enjoy being around me. (Gasp!)
When I'm asked how I feel, I'm honest, but I've learned how to phrase things in different ways to where I don't constantly sound like the Debbie-Downer I used to hate. Instead, when I'm asked how I'm doing I choose to focus on the good things going on in my life, thus giving me a positive answer. It isn't a lie to say, "I'm doing well." I have a lot of really great things going on, and I'm learning to cherish them as they are. I've also stepped out of the bitterness and started asking how other people are doing. I know that may sound extremely selfish, but used to I would never ask, "How was your weekend?" or other variations. Frankly, I didn't want to know because I knew it would be better than mine, because mine inevitably sucked. I'm getting better at what I like to refer as, "The Social Contract." I also realized that I do not have to drink alcohol to comply with, "The Social Contract." I do not have to drink alcohol at all for anything. So I don't. It's hard, especially at get-together's with friends and everyone is having wine or a martini. But my husband is encouraging, and so far I've done ok.
Most of all, I've begun to accept that I am enough. I do have times where I fall down the rabbit-hole of doom and despair, but for the most part I feel good about myself. I'm involved in an amazing support group, I get along with people at work, I'm confident my boss likes me, and I'm finally back at church. In spite of my pain and in the moments of sadness when I get frustrated that I even have to deal with this illness, I also know that God would not have given it to me unless I could handle it. This was a wake-up call for me. The moment I realized I had no control over my body, and never had, I was humbled to the grace of God and reminded that He has had control all along, regardless of my attempts to ignore Him. I was also reminded that I don't have to go this alone. My hope is only that I can continue on the right path and to lean on God when I need strength.
So it seems that letting go of the old me would be easy since the old me didn't seem to pleasant...but it was hard. And I still hold on to bits and pieces of the old me. I'm still cynical about most things, but I'm much more open to positivity than I was before. I have chosen to be Happy.
Thursday, November 15, 2012
Baylee's Fibro Team
You know the saying, "It takes a village to raise a child." Well, I feel like we could also apply that to Fibromyalgia, only it would be, "It takes a team to support a Fibromite." Or something like that. I'm sure you guys could come up with something better.
The point of this post though is to give a shout out to all of the different people who make up "Team Baylee." They will be listed in no particular order, by the by.
Dr. Collins- My rheumatologist, the sweet lady I see once a quarter, and the lady who hooks me up with my meds. Every appointment we go over my pain levels, she re-examines my body to check for new issues, and she makes it a point to address not only the pain but the psychological side of the disorder. She's listens to me when I tell her something isn't working, and she is always helpful when I call to ask about adjusting my medication. This woman has definitely found her calling. Every time I leave my appointment, no matter how upset or discourage I was when I walked in, I always feel refreshed and ready to go fight some more.
Target Pharmacy Team- I LOVE my pharmacy. I get the best customer service from them (except for one time, but it was an isolated situation.) I can never keep track of which medicine I'm actually supposed to be picking up. All of my med refill dates over lap and I never know which one is up. The few times I've ran out of refills they've taken care of me and are always willing to contact my doctor for me. They are just AMAZING!
Rachel- The nice lady who used to listen to me talk once a week. I don't see her anymore for financial reasons, but she was there through everything that happened over the year before I got my diagnosis. She is the first therapist I've seen that I have actually been 100% open and honest with. She helped me through several previous existing issues, and gave me great advice for the current situation I was in. She gave me tools that I will be able to use for the rest of my life to deal with stress that don't include medicating myself. That in itself was worth all the money I could ever give her.
Dr. Pace- My chiropractor, my life saver. He has never lost faith in my ability to get better. He encouraged me through my weight loss before the wedding. I was always so excited to report my new results to him! He was there through all of the frustration of my diagnosis process and what I went through at work. Him, his wife, and staff all genuinely care about both Jeremy and I. We love them to pieces and consider them family!
My Mom and Dad- My mother, who also has Fibromyalgia, is the person I call when I want to vent, celebrate, or just get an outside perspective. I don't have to pretend with her. If I feel like crap, I can just tell her I feel like crap, she understands, and vice versa. If I need to get my head straight I can ask her if I'm being crazy or if I'm valid for feeling the way I do. I know she'll be honest with me. She's always told me, "There's nothing you will ever do or see that I haven't already done or seen." As a kid I always just laughed and shrugged it off. I have since learned that it's absolutely, positively true. She seriously knows everything. Dad has always taken such good care of Mom when she would flare. And he did an even more amazing job taking care of me as a child when Mom was feeling really bad. Now that I'm an adult, he has turned into a wonderful friend that I can ask advice from. Or we can just talk about music, movies, video games...he's just a wonderful support role that I know will always be there to love me and help if I need it. I couldn't and wouldn't trade that sense of security for anything in this world.
Friends- There are so many friends I depend on, and they're all in their own little category. I have the friends who can always make me laugh when I'm frustrated or sad, the friends who I can vent to and no matter how crazy I sound they'll always offer to go beat someone up just to make me laugh and feel better. I have the friends that drag me back to reality when I've gone down the rabbit hole of depression/anxiety and start freaking out about something I have no control over. I've got my Facebook Fibro friends, my Twitter FIbro peeps, and of course my gals of Faith, Hope, and Fibromyalgia. Those ladies have made such a huge impact on my life and I've only known them three weeks. Namely, Joy Peterson, the founder. She checks on me daily via text or email, we pray for each other and pray over our husbands that God will give them the strength, patience, and energy to help take care of us. I've got my friends who live far away and we only talk through Facebook. I can't tell you how amazing it is when I see you guys following my posts here or on Twitter. It seriously means the world to me that you would even be interested in learning about Fibro! THANK YOU! Your support uplifts me daily!
Jeremy- I know you guys are probably sick and tired of hearing me go on and on about my husband and how awesome he is. But you'll just have to get over it :) He's SUPER awesome. He has the patience of a saint, and the tolerance of a wooden statue. Sometimes I don't know how he puts up with me, but I know without a doubt he loves me. This is another sense of security I am thankful for. I know he will be there for me. Always. Love you babe :)
Maggie- This amazing woman is the one I call my Best Friend. I can't help but using that term. We've known each other going on 13yrs. She is the ying to my yang. We're complete opposites but fit so well together. She has inspired me to write and reach out about Fibro, like she has about Crohn's. She has been so encouraging throughout the entire time we've known each other. She stuck with me through all of my crazy boyfriend nonsense in high school and my huge heart breaks in college. She's seen me at my best and most certainly at my worst. Some people mistake us for sisters, and we used to call ourselves The Grace Sisters back in high school. (The most clumsy in real life, yet graceful in dance.) She was the Maid of Honor in my wedding, and one day my kids will call her Aunt Maggie. Even though she's in Chicago and I'm in New Orleans, we still find time to talk and check on each other. This friendship is one that will, with no doubt, last a lifetime.
It goes without saying that God is on Team Baylee as well. I know I'm exactly where I'm supposed to be in my life. I feel that more right now than I ever have before.
And there you have it. I hope I haven't left anyone off. There are so many people who I know support me, so please don't be offended if I didn't list you by name. I love and appreciate every single one of you.
<Who makes up YOUR Support Team?>
The point of this post though is to give a shout out to all of the different people who make up "Team Baylee." They will be listed in no particular order, by the by.
Dr. Collins- My rheumatologist, the sweet lady I see once a quarter, and the lady who hooks me up with my meds. Every appointment we go over my pain levels, she re-examines my body to check for new issues, and she makes it a point to address not only the pain but the psychological side of the disorder. She's listens to me when I tell her something isn't working, and she is always helpful when I call to ask about adjusting my medication. This woman has definitely found her calling. Every time I leave my appointment, no matter how upset or discourage I was when I walked in, I always feel refreshed and ready to go fight some more.
Target Pharmacy Team- I LOVE my pharmacy. I get the best customer service from them (except for one time, but it was an isolated situation.) I can never keep track of which medicine I'm actually supposed to be picking up. All of my med refill dates over lap and I never know which one is up. The few times I've ran out of refills they've taken care of me and are always willing to contact my doctor for me. They are just AMAZING!
Rachel- The nice lady who used to listen to me talk once a week. I don't see her anymore for financial reasons, but she was there through everything that happened over the year before I got my diagnosis. She is the first therapist I've seen that I have actually been 100% open and honest with. She helped me through several previous existing issues, and gave me great advice for the current situation I was in. She gave me tools that I will be able to use for the rest of my life to deal with stress that don't include medicating myself. That in itself was worth all the money I could ever give her.
Dr. Pace- My chiropractor, my life saver. He has never lost faith in my ability to get better. He encouraged me through my weight loss before the wedding. I was always so excited to report my new results to him! He was there through all of the frustration of my diagnosis process and what I went through at work. Him, his wife, and staff all genuinely care about both Jeremy and I. We love them to pieces and consider them family!
My Mom and Dad- My mother, who also has Fibromyalgia, is the person I call when I want to vent, celebrate, or just get an outside perspective. I don't have to pretend with her. If I feel like crap, I can just tell her I feel like crap, she understands, and vice versa. If I need to get my head straight I can ask her if I'm being crazy or if I'm valid for feeling the way I do. I know she'll be honest with me. She's always told me, "There's nothing you will ever do or see that I haven't already done or seen." As a kid I always just laughed and shrugged it off. I have since learned that it's absolutely, positively true. She seriously knows everything. Dad has always taken such good care of Mom when she would flare. And he did an even more amazing job taking care of me as a child when Mom was feeling really bad. Now that I'm an adult, he has turned into a wonderful friend that I can ask advice from. Or we can just talk about music, movies, video games...he's just a wonderful support role that I know will always be there to love me and help if I need it. I couldn't and wouldn't trade that sense of security for anything in this world.
Friends- There are so many friends I depend on, and they're all in their own little category. I have the friends who can always make me laugh when I'm frustrated or sad, the friends who I can vent to and no matter how crazy I sound they'll always offer to go beat someone up just to make me laugh and feel better. I have the friends that drag me back to reality when I've gone down the rabbit hole of depression/anxiety and start freaking out about something I have no control over. I've got my Facebook Fibro friends, my Twitter FIbro peeps, and of course my gals of Faith, Hope, and Fibromyalgia. Those ladies have made such a huge impact on my life and I've only known them three weeks. Namely, Joy Peterson, the founder. She checks on me daily via text or email, we pray for each other and pray over our husbands that God will give them the strength, patience, and energy to help take care of us. I've got my friends who live far away and we only talk through Facebook. I can't tell you how amazing it is when I see you guys following my posts here or on Twitter. It seriously means the world to me that you would even be interested in learning about Fibro! THANK YOU! Your support uplifts me daily!
Jeremy- I know you guys are probably sick and tired of hearing me go on and on about my husband and how awesome he is. But you'll just have to get over it :) He's SUPER awesome. He has the patience of a saint, and the tolerance of a wooden statue. Sometimes I don't know how he puts up with me, but I know without a doubt he loves me. This is another sense of security I am thankful for. I know he will be there for me. Always. Love you babe :)
Maggie- This amazing woman is the one I call my Best Friend. I can't help but using that term. We've known each other going on 13yrs. She is the ying to my yang. We're complete opposites but fit so well together. She has inspired me to write and reach out about Fibro, like she has about Crohn's. She has been so encouraging throughout the entire time we've known each other. She stuck with me through all of my crazy boyfriend nonsense in high school and my huge heart breaks in college. She's seen me at my best and most certainly at my worst. Some people mistake us for sisters, and we used to call ourselves The Grace Sisters back in high school. (The most clumsy in real life, yet graceful in dance.) She was the Maid of Honor in my wedding, and one day my kids will call her Aunt Maggie. Even though she's in Chicago and I'm in New Orleans, we still find time to talk and check on each other. This friendship is one that will, with no doubt, last a lifetime.
It goes without saying that God is on Team Baylee as well. I know I'm exactly where I'm supposed to be in my life. I feel that more right now than I ever have before.
And there you have it. I hope I haven't left anyone off. There are so many people who I know support me, so please don't be offended if I didn't list you by name. I love and appreciate every single one of you.
<Who makes up YOUR Support Team?>
Tuesday, November 13, 2012
Fibro Fog Moments
Fibro Fog...my fickle friend... Otherwise known as:
Brain Fart
Losing your place
What's that word?
Zoning out....
What were we talking about? Oh, right, Fibro Fog. One of the least physically painful symptoms of Fibromyalgia, but in my opinion is equally as frustrating as the chronic pain. How on earth could forgetting a word or zoning out be just as frustrating as hurting all of the time? I'll tell you why. Because Fibro Fog likes to rear its space-cadet head at the most inopportune moments, usually when you're actually feeling decent and doing well.
For once you're able to sit down and have a good conversation with your mom, sister, friend...whoever. You're feeling better, they're making you laugh, then you think of that funny thing that happened the other day that you should totally tell them. And then it's gone. Sometimes mid-sentence, sometimes before you can even get it out. And once more, you're reminded you aren't nearly as sharp as you once were. You aren't the old you. The one that was quick and witty, the one who could stand her ground in debate and never lose her place. Yeah, that isn't you anymore. Now you recluse from conversations, especially with people who don't know about the Fibro...people who would only look at you like you're stupid.
Then there's the times when it happens at work. You're on the phone with a client and they tell you their name, you go to write it down in the same moment and it's gone. So then you have to look like the inconsiderate Customer Service Representative who couldn't bother to remember their name and ask for it again...possibly one or two more times. Or maybe by that time you've just switched to calling them "Sir," or "Ma'am," because it's too embarrassing to ask for their name again. Thank goodness for those two words. They really save me sometimes.
My favorite though is the conversations with my husband. Two of the most common questions I get from him is, "Remember? I told you that the other day," or "We talked about that already. Did you forget?" Yes. I did forget. In fact, I usually have no recollection of the conversation at all. Like zero. It never happened. Whereas used to I would argue to the death that I was right and we absolutely did NOT talk about whatever subject it is...I have now learned to accept and basically assume he's right. Because more times than not, I am wrong. My short-term memory is basically non-existent. Sometimes I get to play the fun game of, "Did I say that out loud or did I just think it?" Never being sure can make things quite interesting.
My friends and husband like to joke about my ADD. I've never actually been diagnosed with ADD or ADHD before...and I'm honestly not sure how much of my space-cadetness (yes I just made that up) comes from the Fibro Fog and how much could possibly be attributed to something else such as OCD or ADD. All I know is I'm spacey, I forget things all the time, and my brain is usually going a BAJILLION MPH. And I do tend to get frustrated with myself when I cannot cognitively function up to par with the rest of my friends.
<What are some of your best/worst Fibro Fog moments? Please share!>
Brain Fart
Losing your place
What's that word?
Zoning out....
What were we talking about? Oh, right, Fibro Fog. One of the least physically painful symptoms of Fibromyalgia, but in my opinion is equally as frustrating as the chronic pain. How on earth could forgetting a word or zoning out be just as frustrating as hurting all of the time? I'll tell you why. Because Fibro Fog likes to rear its space-cadet head at the most inopportune moments, usually when you're actually feeling decent and doing well.
For once you're able to sit down and have a good conversation with your mom, sister, friend...whoever. You're feeling better, they're making you laugh, then you think of that funny thing that happened the other day that you should totally tell them. And then it's gone. Sometimes mid-sentence, sometimes before you can even get it out. And once more, you're reminded you aren't nearly as sharp as you once were. You aren't the old you. The one that was quick and witty, the one who could stand her ground in debate and never lose her place. Yeah, that isn't you anymore. Now you recluse from conversations, especially with people who don't know about the Fibro...people who would only look at you like you're stupid.
Then there's the times when it happens at work. You're on the phone with a client and they tell you their name, you go to write it down in the same moment and it's gone. So then you have to look like the inconsiderate Customer Service Representative who couldn't bother to remember their name and ask for it again...possibly one or two more times. Or maybe by that time you've just switched to calling them "Sir," or "Ma'am," because it's too embarrassing to ask for their name again. Thank goodness for those two words. They really save me sometimes.
My favorite though is the conversations with my husband. Two of the most common questions I get from him is, "Remember? I told you that the other day," or "We talked about that already. Did you forget?" Yes. I did forget. In fact, I usually have no recollection of the conversation at all. Like zero. It never happened. Whereas used to I would argue to the death that I was right and we absolutely did NOT talk about whatever subject it is...I have now learned to accept and basically assume he's right. Because more times than not, I am wrong. My short-term memory is basically non-existent. Sometimes I get to play the fun game of, "Did I say that out loud or did I just think it?" Never being sure can make things quite interesting.
My friends and husband like to joke about my ADD. I've never actually been diagnosed with ADD or ADHD before...and I'm honestly not sure how much of my space-cadetness (yes I just made that up) comes from the Fibro Fog and how much could possibly be attributed to something else such as OCD or ADD. All I know is I'm spacey, I forget things all the time, and my brain is usually going a BAJILLION MPH. And I do tend to get frustrated with myself when I cannot cognitively function up to par with the rest of my friends.
<What are some of your best/worst Fibro Fog moments? Please share!>
Monday, November 12, 2012
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.
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.
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!>
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